tag:blogger.com,1999:blog-32513453937596387972024-03-05T11:27:06.385-08:00Flexibility is over-rated, creativity is ingeniousLife with Ehlers Danlos Syndrome...Who knows where it's going to go, but my goal is to make this a positive, empowering and honest place.
Creativity is the fuel to my fire.Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.comBlogger89125tag:blogger.com,1999:blog-3251345393759638797.post-21772365052987006222014-03-08T19:24:00.000-08:002014-03-08T19:59:38.073-08:00Ch-ch-ch-changes....<b>Hello to: Whoever may still be here!<br />In case you were wondering what ever happened to this thing, it was sorrily neglected. Sickness got the best of me and almost everything had to take a back-seat. <br /><br />My "5 year plan" that was well on it 's way to becoming a reality, and my "new EDSy life" was looking pretty promising. That all went down the drain, and life became a matter of survival with fun thrown in wherever possible. <br /><br />When I first started learning about EDS, I remember thinking that no matter how bad things got; my emotional well being wouldn't be all much affected. That was when I had a ton of energy and in my "prime". Now that my life has come a complete 180, I understand exactly what they talking about. Needless to say, it was a giant slice of humble pie. I had to learn to flex my brain muscles instead, and am still working on it. <br /><br /> Our little local EDS "Bendy posse" evolved into an Ontario group, and now it is Canada wide. Though it's taken a ton of very hard work, and endless advocating, it has grown into something far beyond what we could imagine was possible. <br /><br />Here is EDS Canada in all of it's glory:<a href="http://ehlers-danlossyndromecanada.org/" target="_blank">http://ehlers-danlossyndromecanada.org/</a><br /><br />I've got a big catch-up post in the works, and will be adding more info. to the blog. I'm hoping to have it complete in a week's time. <br /><br />Please check back soon!!!!</b>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-318327645774260582012-04-22T00:17:00.000-07:002012-04-22T21:50:52.194-07:00The time EDS threw me into the epic pit of doom, and I slowly climed my way out<div style="font-family: Georgia,"Times New Roman",serif;">
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<span style="font-size: small;"><b>To sum it up, EDS kicked my ass. Royally.</b></span></div>
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<span style="font-size: small;"><b>The migraines and gastroparesis got out of control and basically left me unable to do pretty much anything. I had to completely stop working, and figured that I was okay because I still had school going on. Eventually that had to go too. I couldn't do any of my readings without getting slammed with a killer migraine and spent the majority of my time laying in the dark. Gastroparesis left me refluxing and vomiting anything I put in me, wether I ate it or put it through Jerome. Nothing was working.</b></span></div>
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<span style="font-size: small;"><b>It all began to affect every other aspect of my life, which eventually led to depression. I was done with trying beat being sick and resigned myself to being stuck in the epic pit of doom forever. I stopped caring about everything and felt like I was just existing. I didn't have anything going on besides being sick.</b></span></div>
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<span style="font-size: small;"><b>There were so many things I wanted to do, but there was NO way any of it could be done. I had figured if I couldn't do the school thing, I could at least volunteer. However, being that sick made it impossible. Being as sick as I was, left me with no consistency other than knowing at some point during day I would end up laying in the dark barfing. I had no idea where I was going or what was going to happen next, and it scared the shit out of me.</b></span></div>
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<span style="font-size: small;"><b>The one thing that did stay consistent was the unconditional support and love from my friends. I was lucky enough this time around, that most of them stuck around. They knew how sick I was, and did whatever they could to help. They were the ones who met me at the bottom of the pit of doom and helped me dig myself out. I couldn't really go out and do much of anything, so they came to me. My living room and bed became the places for us to hang out, unless it was a good day and I could lay on their couch or floor. Countless ice cream and finger-painting dates were had on my bed, and that was the very best medicine. I had friends who'd roll with the punches and make the most of whatever my symptoms were throwing at us. If I wasn't well enough to be upright, we'd lay in the dark and talk or meditate. In the evening and at night was when my body could tolerate food, so we would have picnics in the park at night. My friends would come to consults and appointments with me, knowing how hellish they had become, because no doctor would go near me. My friends are the ones who kept me participating in life, who kept me afloat when I was too tired to swim. They always picked up the phone at stupid o'clock in the morning when I was having the biggest meltdowns of my life, not knowing what to do with myself. One thing that was vastly different this time, is that I knew without a doubt that I could trust my friends. They had my back, no matter what. None of what they did was out of obligation, it was out of love. That reason alone, has been the thing that has given me the drive to climb out of the epic pit of doom. I can't thank them enough for everything they've done, but I know I don't need to thank them, because I'll have their back whenever they need me. That's just how it works.</b></span></div>
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<span style="font-size: small;"><b>Some of you might choke on whatever you're eating when you read this part...The other thing that made a difference is that I finally found doctors who will take me and my crazy body, and do whatever they can to make life better. It started with one doctor after an ER run, he was the first one other than Awesome GP to listen, believe me and rack his brain to find things that would help. He was the one who gave me hope, and encouraged me to hold on. He was the one who found a medication that helped the migraines, and who referred me to other doctors to get the GI insanity sorted. Interestingly enough 3 of my favourite doctors went to school with Awesome GP. Now I'm happy to say that I've got an incredible team of doctors who are also willing to take on other bendy's.</b></span></div>
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<span style="font-size: small;"><b>I'm going to finish this post with a bit of a happy ending...a month ago I finally got that Nissen Fundoplication done. It's been a month since I've last had reflux or vomited (for real). It took years of doctor fighting, countless tests, ER runs, hospital admissions, extra-parts (J-tube, Port-a-cath), injuries from the said barfing (I gave myself a hernia), 25lbs lost, being hooked up to a portable IV pump for a month and endless advocating. Now I'm recovering with a light at the end of the tunnel. When I'm fully recovered, I can just have a plain g-tube (I'll call it Gerome), won't need my port (Perry). I'll start being able to get some of my life back, it will be far less complicated and I can start moving on to other things while I get the cervical instability sorted. I know I'll always be needing surgeries and procedures to stay alive and well, but having surpassed the biggest hurdle yet feels great. It couldn't have been done without the endless support of my friends, family and kindness of strangers. The universe has taken me on quite the ride and brought some truly incredible people into my life. I'm excited to see where else this journey takes me and the other people I'll meet on the way.</b></span></div>
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<span style="font-size: small;"><b>Our Bendy Posse has grown significantly not only in numbers, but also in how much we consider eachother our own family. From a group of people who met on-line a couple years ago, then meeting for real months later at a conference in another country, we worked hard at networking, advocating and building a relationship like no other. It is fair to say that we'd do anything for eachother, with nothing being out of the question and all out of unconditional love. We take turns being guinea-pigs for surgeries and procedures, refer eachother to doctors, do fun things outside of all the medical junk we deal with and will stop at nothing to ensure our bendy brothers and sisters are taken care of. Alone we can manage, but together our strength can't be measured. And you'd better believe no one messes with this bendy posse, no one.</b></span></div>
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<span style="font-size: small;"><b>As dark as these times have been, they've also been a time of significant growth with lessons that couldn't have been learned otherwise. I have so much gratitude for the people who've helped me out in the last year, no matter how big or small their contributions have been, none of it has gone un-noticed and I am truly grateful for it all. I never thought in a million years that a crazy disease would bring many people together from all different walks of life, to help out a girl who just wanted to give peace, compassion, creativity, love and empowerment to those in our world who needed it most. I guess the universe figured that it was my turn to be on the receiving end this time, so I could take what I learned this time and apply it to my previous work, to create something more powerful and filled with love and compassion that could be given to whoever needs it next.</b></span></div>
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<span style="font-size: small;"><b>As this journey gets more wild and crazy, bigger things are happening with regards to awareness and treatment of those with connective tissue disorders or other rare diseases. I couldn't be more proud to be part of this revolution, knowing we're in it together and changing things for good. I guess it goes to say that we should never underestimate the power of bendy people and the people behind them, because we make big things happen.</b></span></div>
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<span style="font-size: small;"><b>Thanks for sticking around, when this blog has gone silent for the past while. I'm hoping that this is the beginning of regular updates and good news to follow.<br /><br />These pictures are in no particular order, but I've been wanting to share some of them so here we go....</b></span></div>
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<span style="font-size: small;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh09w4mJ6L_RBzu4b8PemjvuPv7DeUuFr9XqbeN42DbH0VumeOtvcuMONmOFrH15k-GI248kPxqnMPkmfZ79K1f61BfPMexJGLmezlwvb0SDuGgksI5p9LAD8L9fTs8UJSVSaUCJE9VTcI/s1600/425785_10101006665022302_28122205_65960396_721180194_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh09w4mJ6L_RBzu4b8PemjvuPv7DeUuFr9XqbeN42DbH0VumeOtvcuMONmOFrH15k-GI248kPxqnMPkmfZ79K1f61BfPMexJGLmezlwvb0SDuGgksI5p9LAD8L9fTs8UJSVSaUCJE9VTcI/s320/425785_10101006665022302_28122205_65960396_721180194_n.jpg" width="240" /></a></b></span></div>
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<span style="font-size: small;"><b>This Soctopus's name is Juju, given to my by a bendy sista' who came to visit after I got fundo'ed. On the back of it, the phrase I constantly use "Just keep swimming" was embroidered. Juju made recovery so much happier. Interestingly enough this bendy sista', was a friend of mine in high-school who also had wacky health related stuff going on too. After learning about EDS on my Facebook and doing a little research, we got her in with Awesome GP and the same geneticist. Turns out, not only are we high-school friends, but officially bendy friends too! I'm so happy she finally got a diagnosis, but sad it was EDS...You know how it goes. She's a regular at my house, we spend hours hanging out in my bed, finger-painting and eating cookies. Because at least if it tastes good going down, it's worth it coming back up! Isn't gastroparesis awesome?!</b></span> </div>
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<span style="font-size: small;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdFFQk1AyCuj8ZgYZP-iq4YfYnROQ4W5DWPx1gpccX4KuJkNZN8VYIotEwGvDlPUd5kcwEvjtvlDK7xqj1Kw4lZ5oEQHjwuErHKgszehl9Ss0lwxCl80sds-K4FJ5lhmU4x5fvWpnnVzI/s1600/428158_10150660556991870_513361869_9061605_1331804577_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdFFQk1AyCuj8ZgYZP-iq4YfYnROQ4W5DWPx1gpccX4KuJkNZN8VYIotEwGvDlPUd5kcwEvjtvlDK7xqj1Kw4lZ5oEQHjwuErHKgszehl9Ss0lwxCl80sds-K4FJ5lhmU4x5fvWpnnVzI/s320/428158_10150660556991870_513361869_9061605_1331804577_n.jpg" width="320" /></a></b></span></div>
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<span style="font-size: small;"><b>This was fundo day, and Tiff and I made sure to make it FUN as possible. We busted out the Sharpies in pre-op to kill some time and cover me in juju. She drew everything lucky she could think of on me before they wheeled me in the OR and started chopping. After I got out of recovery and back in my room, the colouring continued and my entire leg was covered. She was the recipient of foot and calf massages while she coloured, as her dislocated metatarsals weren't happy and needed to be elevated. It was yet another opportunity for me to trust (something I've been working VERY hard on) and she took such excellent care of me since I couldn't do anything myself. She made sure my head/neck were supported when I was re-positioned, she re-located joints for me, got me drinking sips of juice, and gave the team of dr's hell (I mean educated them) when I didn't have adequate pain control. She was my "person" and I wouldn't have wanted anyone else for this round but her. When she get's fundo'd I'll be her "person" and will do whatever it takes to make it FUN cause that's how we roll. </b></span></div>
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<span style="font-size: small;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEics8t_-IppKqFNKNkFEMck5PeuiP4BMjw75PIZITvzccUVf3lPshMrVl5SGeGUVKpJmxzT9SVwfajq2YRGNRMvPs6qOqhmDJheONI9YyXFY0of6eK47BEGG-d3ATw6qOeS0l42FfoJnFE/s1600/431546_10150590288793301_501453300_8945289_83177383_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEics8t_-IppKqFNKNkFEMck5PeuiP4BMjw75PIZITvzccUVf3lPshMrVl5SGeGUVKpJmxzT9SVwfajq2YRGNRMvPs6qOqhmDJheONI9YyXFY0of6eK47BEGG-d3ATw6qOeS0l42FfoJnFE/s320/431546_10150590288793301_501453300_8945289_83177383_n.jpg" width="276" /></a></b></span></div>
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<span style="font-size: small;"><b> A very dear friend of mine gave my this Tibetan Buddha she got while she was in Burma a while ago. There's a pretty incredible story behind the whole thing, and she was sure the universe wanted me to have it. I loves that Buddha!!! The crystal he's holding is from another one of my favourite people and dear friend. It comes in my pocket to all my appointments and is packed with juju to work it's magic whenever I need it. Those beautiful flowers are from one of my "other mummy's" who's been a constant source of love and encouragement for years. She always finds the coolest healing/encouraging things to send and those flowers came to me one day when I was feeling extra-poopy. She has a magical way go getting things to me when I need them most. I love how I was able to capture all of these beautiful things together in one picture, that makes me so happy every time I see it. As it's jam packed with nothing but LOVE.</b></span> </div>
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<span style="font-size: small;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyabQN1eEZa5XDNoQ7tERxsdKIUoW4ZAFYWxr0PEbh2JUE8l4N6rq6DDfBsdM_-u_qQ96Pke8UeAb48_s8z2KL1OcTpwflQUQGfbtbplZrsvu1lMMB9UUWX9E9-6Ln0zRcY4hgRTp_TG4/s1600/523132_10100700480129490_48910701_59538889_1902741118_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyabQN1eEZa5XDNoQ7tERxsdKIUoW4ZAFYWxr0PEbh2JUE8l4N6rq6DDfBsdM_-u_qQ96Pke8UeAb48_s8z2KL1OcTpwflQUQGfbtbplZrsvu1lMMB9UUWX9E9-6Ln0zRcY4hgRTp_TG4/s320/523132_10100700480129490_48910701_59538889_1902741118_n.jpg" width="320" /></a></b></span></div>
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<span style="font-size: small;"><b>Surprise, Surprise there's always a bendy in the hospital. I had an idea one day to make a Bendy-Bag O' Fun & Survival for whoever was inpatient. I told another bendy sista' about it, and she jumped on board and we filled that bag with so many awesome things before heading to visit Christie at Chateau Sinai. When she gets discharged, her job is to add another item to the bag, and send it to whoever is inpatient next. We hope the Bendy Bag evolves into something far beyond what we could ever imagine, since we're pretty good at doing things like that in crappy situations. It's one of our posse's super-powers.</b></span></div>
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<span style="font-size: small;"><b>Some more awesomeness that came when I was sicker than ever, was multiple hair-cuts from a friend of a friend who thought I needed a pick me up. Darlene does such an excellent job with my cave-man hair!!! I also got a package from another bendy sista' Brooke who sent me the coolest surgery pants ever. Of course they didn't let me wear them during surgery, but they were the first things I put on when I got to my room. These pants make me so happy!!</b></span> </div>
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<span style="font-size: small;"><b>Right now, Christie is stuck at Chateau Sinai with a host of GI craziness very similar to what I had, and pretty much every EDSer who's got gastroparesis. We managed to bust her out one afternoon for some fresh-air and sanity, which is the best medicine ever. She perked right up, and looked so good after getting out for a bit. Poor girl is still stuck there, so our posse tries to make frequent visits to make sure the doctors are doing their jobs, and restoring sanity along with some much needed silliness. </b></span></div>
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<span style="font-size: small;"><b> No, I promise we don't need to be moved to the psych floor. This is part of our dx...This photo is a bit old, I was still recovering and couldn't sit, constantly needing ice-packs on my swollen stomach.</b></span></div>
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<span style="font-size: small;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7CkNUYfHSlRKJKx6KgAZC9YLzlmDG6q2CQu3FMKagKDPf_qqRl2BqMJ6RnOC2ypfxbULYLs_ApPJ95MgLJuVKctI5V-_zqxaS_vOs7va-oREK526TqY-LKVjcjwc9EE8-EasSgBAud4s/s1600/386004_10150424669631870_513361869_8290637_1378865010_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="254" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7CkNUYfHSlRKJKx6KgAZC9YLzlmDG6q2CQu3FMKagKDPf_qqRl2BqMJ6RnOC2ypfxbULYLs_ApPJ95MgLJuVKctI5V-_zqxaS_vOs7va-oREK526TqY-LKVjcjwc9EE8-EasSgBAud4s/s320/386004_10150424669631870_513361869_8290637_1378865010_n.jpg" width="320" /></a></b></span></div>
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<span style="font-size: small;"><b> Miss Brooklyn has been through HELL and back, not only is she the first in our group to get spinal fusions, a Chiari decompression, she's getting a fundo now too. I'm excited for her because there will finally be an end to all the GI insanity, but this girl needs a break!!! She's my J-tube and port-a cath buddy. It's hard to see, but in this pic we're both hooked up and getting infused at a bendy get-together. She's one of the toughest cookies the world has yet to see. Nobody ain't got nothin' on her! Yet, sweet as pie. We loves you Brooke!!</b></span></div>
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<span style="font-size: small;"><b> Ted had surgical craziness around the same time as well. A simple procedure resulted in insane bruising from his hips to his toes, along with a hospital admission. Thanks to dr's and tech who decided not to listen, and had a bit of the god complex goin' on. This is why we have to fight so much, dangerous things happen to us so easily when we're not taken seriously. Sadly we end up having to prove them wrong, by enduring the consequences of horrible judgment. Soon our guitar playin' brotha' will be back at school, composing and playing some incredible jazz for the world to hear.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEharBXC6qU_0uUPFYwrAeRf-RqoG6PMcAQyjnfSGgb_I_Thlom7lmz2EWEwY5MGSOvz4yPLFeKihm1iwLMh85cXI2t54cKz2I4zPAHG39tGpEJbgcDo7EPIgxqPm-QR-B050c9ARiD8beI/s1600/281576_10150271266361870_513361869_7406901_196731_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEharBXC6qU_0uUPFYwrAeRf-RqoG6PMcAQyjnfSGgb_I_Thlom7lmz2EWEwY5MGSOvz4yPLFeKihm1iwLMh85cXI2t54cKz2I4zPAHG39tGpEJbgcDo7EPIgxqPm-QR-B050c9ARiD8beI/s320/281576_10150271266361870_513361869_7406901_196731_n.jpg" width="320" /></a></b></span> </div>
<span style="font-family: Georgia,"Times New Roman",serif; font-size: small;"><b>Tiff, my sista' from anotha' mista'! I can't wait to take care of her when it's chop-chop-fundo time for her. We make a great team and I'm so happy that we found eachother. Neither of us believe to this day that it was at a medical conference in Baltimore, when I randomly offered to tape her ankles, and we both realized that we lived in the same city. Never in a million years....Thank you universe for bringing us together!<br /><br />So now that I've got this post hot off the press, to say....There will be more to come. Thanks for the reminders to write, and the encouragement to "keep swimming" when I felt the only thing I could do was drown. Thank you for keeping me afloat. Nak is back!</b></span><br />
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<b>I think my next post will be about our 80+ member strong real-life support group we've worked so hard at creating for ourselves in Ontario. We had a mission, and boy did we deliver!! It's cause we're awesome... If you are someone in Ontario who's got Ehlers Danlos Syndrome and are looking for support look here</b> :<a href="https://www.facebook.com/#%21/groups/122991031078258/" target="_blank">Ehlers Danlos Syndrome Ontario (EDSO)</a>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com7tag:blogger.com,1999:blog-3251345393759638797.post-10456652542506773582011-09-18T12:20:00.000-07:002011-09-19T22:38:38.233-07:00Jerome and Perry, the tale of a Port-a-cath and a J-tube.<span style="font-weight: bold;">It has been two weeks since Perry got put in and Jerome changed out. I'm just starting to get my energy back and finding my groove with two new men in my life. By men, I mean tubes with boys names.</span> <span style="font-weight: bold;">The first week was a write off in terms of me being physically able to do anything. It's not like getting Perry put in was some big surgery or anything, but because of the way my body works it knocked me out. When I was talking with the surgeon beforehand, I made sure he knew that I wanted Perry put up high on my chest. The reason for it is because I didn't want the tube going into my jugular vein to be pulled, and finding comfortable clothes would be easier. When they were doing the procedure, I reminded the team of it again. Sedatives don't really do much for me. So as it stands, Perry is on my boob and the tube going into my jugular vein is always pulled and tight. Wearing push-up bras, v-neck or scooped neck shirts kind of help things. It doesn't help that I use my pectoral muscles for everything that my shoulders should be doing. Having Perry placed where he is, has been taking a lot of getting used to. I'm getting a lot better at not hitting my boob and I had to learn to hug again. The first time I hugged someone with Perry accessed, it hurt like a mofo. The incisions are healing well and the bruising is almost gone. I love the fact that it only takes 1 attempt to get him accessed and it doesn't really hurt. It's so much better than multiple attempts at digging around and blowing out veins. I'm getting 2L of fluids over 3hrs everyday. I refused a pump and have the freedom to be hooked up in my room, the living room and the front porch. The funny thing is I'm taking better care of myself at home than I was getting in the hospital. I'm so thankful that I can do things my way.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPc5tbtOjbOud9mMWMAj0bRFFZ9COfwn07hiScZoVw9wF8JVAphoia2d8lOsw4KgG5AkM7saoECzkUWWA3fItFQ30uoaZqiuAcKhSWa4j6k59iTum8teYwSzxh21Ri6Ik8sTQBYTsTHtg/s1600/Picture0372.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPc5tbtOjbOud9mMWMAj0bRFFZ9COfwn07hiScZoVw9wF8JVAphoia2d8lOsw4KgG5AkM7saoECzkUWWA3fItFQ30uoaZqiuAcKhSWa4j6k59iTum8teYwSzxh21Ri6Ik8sTQBYTsTHtg/s320/Picture0372.jpg" alt="" id="BLOGGER_PHOTO_ID_5654308517411086274" border="0" /></a><br /><span style="font-weight: bold;">Jerome, he's healing well with some funky scaring and I've had no problems with him. Except that I still really hate the type of tube that he his. I cut those white pointy bits off the tube and have found that my skin prefers to hold Jerome in place with Tegaderm rather than paper-tape, and the red plastic attachment is sharp and scratchy. I just really dislike the fact that it's uncomfortable and I can't un-hook this tube and forget about it like I could with the mic-key button. There are bonuses with this tube, one is that I don't need the expensive extension tube for the mic-key button, which does not come with a cap or lid, so I had been putting it in a Ziplock bag. Secondly, I can lay on my stomach comfortably which I couldn't do with the mic-key. However, now that I have Perry I can't really lay on my stomach. Bleh.</span><br /><br /><span style="font-weight: bold;">Overall, I'm feeling okay if I have my fluids and pretty much everyone who sees me says I'm looking better. I still have dysautonomia spikes but they're less frequent and not as intense. GI wise, if I'm not really using my Jerome or eating I'm okay. I still have the awesome puking abilities. Lentils and quinoa that I had eaten 12 hours prior didn't want to stay down, I even get lentils stuck in my nose as part of the side show. Aren't you glad I told you? I'm refluxing pretty much everything except that plain chips, rice noodles, mangoes and coconut juice are relatively okay. I still eat other things because I need the nutrients, I love food and if I'm going to barf, it's going to be worth it.<br /><br /></span> <span style="font-weight: bold;">I'm still working out a routine and efficient way to work in Perry and everything that comes along with it. After a week of fighting with home-care I finally have a care-plan that works for me. The one they gave me had to be refused and worked out a couple of times. It was well worth it. Living with EDS means a lot of loss and a lot of compromise. One thing I will not compromise is my quality of life.</span> <span style="font-weight: bold;"><br /><br />I still get headaches and migraines everyday but with the fluids, being in low light or darkness, quiet and laying down are helping. I've got the brightness on my laptop turned all the way down which helps a bit, but after a while it gets too bright,things get blurry and I see double. I can get about 3-4 hrs of being upright and out & about before I'm toast.<br /><br /></span> <span style="font-weight: bold;">Meds have been pretty straight forward. I'm barfing a little less with Oxycodone and it's helping with pain reduction by about 50%. I chickened out again on doing a Propranolol trial, the weekend prior was just to nice outside to be wasted on experiencing side-effects, and this past weekend I was feeling gross so I didn't want to punish myself anymore. Since I'm using Perry everyday it means I need to have it flushed with Heparin everyday. We decreased the dosage a bit because I'm a bit of a bleeder to start with and also because of the frequency that I'm using it. That's all going well, I've noticed that little cuts bleed more, and my mouth gets cut and blisters a little more easily than before but nothing crazy.</span><br /><br /><span style="font-weight: bold;">I've got some pretty insane cabin fever at times, but manage to get Jack-Jack out for an hour's walk everyday. I can finally didgeridoo again which makes me so happy, I was going a little crazy for a while. Otherwise things are getting better as I'm adjusting and wrapping my head around having two tubes. I'm starting to trust more, letting friends help and not worrying about being uppity and energetic when I'm drained. The things I'm having the hardest time with is not being able to work or being active. Those two things were my life, which means I still have a lot of work to do and need to keep trying to find new outlets and passions. When I'm laying around at home during the day I feel lazy, like I should be working and that I need to always be doing something productive. When I start my day with pain-killers or anytime I take them, I feel like someone who needs to be on Intervention. I dislike how I feel when I'm taking them, and wish so much that I didn't need them. Then I realize after not taking the meds that I am always in pain, I am chronically sick and I can't work right now. I guess I'm paranoid that people see me as someone who's taking advantage of the system and getting a free ride. It's not like having one of those "sick days" where some people skip out on work for the day. I would love to be able to work again.</span><br /><br /><span style="font-weight: bold;">Since most of our bendy posse sees a lot of the same doctors, we often are in the neighbourhood at the same time so we like to try and meet for a bite to eat. Toronto has some excellent food options for any GI or TMJ friendly diet.<br /></span> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkg2_LPyQTPLi7Bk8aIjqVBJ80QFxEwaoI8VgQFFC8NjiSkTtuQ-8JxBF6Mv13lwNVzc-vHv_jx-KEi9SFpA8lPTNGJ_Uxx_uBSpT0DUTpJTYBlVcZyonQEd2aq_ULGpdFpKIT9EkBJBY/s1600/303865_10100421497557800_48910701_57716820_137552350_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkg2_LPyQTPLi7Bk8aIjqVBJ80QFxEwaoI8VgQFFC8NjiSkTtuQ-8JxBF6Mv13lwNVzc-vHv_jx-KEi9SFpA8lPTNGJ_Uxx_uBSpT0DUTpJTYBlVcZyonQEd2aq_ULGpdFpKIT9EkBJBY/s320/303865_10100421497557800_48910701_57716820_137552350_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5654297797832716994" border="0" /></a> <span style="font-weight: bold;">Last week a bunch of us met for brunch (which we found out isn't the best idea for some of us) and later on in the week we met for Thai, and had lunch with the most delightful, almost 11yr old zebra.</span> <span style="font-weight: bold;">Right now everyone in our bendy posse seems to be holding their own, which is so nice after the insane summer we all had. A bunch of us have big surgeries coming up and I think we're all enjoying the stability and taking it easy. </span> <span style="font-weight: bold;">And just for fun, I'm going to leave you with quotes from our bendy sista' Tiffany who had her tonsils finally taken out after 3yrs of doctor fighting. I love that girl.</span><span style="font-size:100%;"><span class="messageBody" ft="{"type":3}"><br /><br /><br /></span></span><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAvWuDrrP_XtwpLO2-2C_ZgL5QUcf2PFUbN5eXY9OF9PnVVWJiOlUWbgQDkIa0Vtezi6fMwiN3AaL8uje4UnckFsE2BzcmL2e00iD2oq_QcUFSF9MfskgT3fvDYUJa9K6v3nLbl8K_pMk/s1600/klassy.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAvWuDrrP_XtwpLO2-2C_ZgL5QUcf2PFUbN5eXY9OF9PnVVWJiOlUWbgQDkIa0Vtezi6fMwiN3AaL8uje4UnckFsE2BzcmL2e00iD2oq_QcUFSF9MfskgT3fvDYUJa9K6v3nLbl8K_pMk/s320/klassy.jpg" alt="" id="BLOGGER_PHOTO_ID_5654305725172339314" border="0" /></a><br /></div><span style="font-size:100%;"><span class="messageBody" ft="{"type":3}"> <span style="font-style: italic; color: rgb(255, 255, 153);">"I'm a bit cheeky, so I'm wearing a Dr. Pepper shirt that reads, 'Trust me, I'm a doctor' to my surgery ;-P"</span></span></span><br /><br /><span style="font-style: italic; color: rgb(255, 255, 153);" class="messageBody" ft="{"type":3}">"I am working on my relationship with my couch. It's important to spend quality time together."<br /><br />"Rosanne is getting her own reality show. You know who would make an awesome reality show? Celine Dion. You know you would watch. You'd be ashamed and wouldn't tell anyone, but you'd watch for sure"<br /><br />"</span><span class="messageBody" ft="{"type":3}"><span style="font-style: italic; color: rgb(255, 255, 153);">I like my murse... He's taking good care of me." (In reference to her husband)</span><br /></span>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com1tag:blogger.com,1999:blog-3251345393759638797.post-91035095091093288882011-09-05T23:52:00.000-07:002011-09-06T00:15:52.653-07:00Introducing Perry, my port. On to plan "F" let's hope it works!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Zg6JVBH6FLwO6gj4-f7oa2uA_foPGX2gDhOREU3MEaMND9wgpAegvd3snv6ft_8vNQYAjoHb6wRwYsxJDv35JQ0MePQVDZcDtME1kPlVIsAXDWug9mz_1z0gB7t9i8swKo6g_6aKBQk/s1600/Picture0360.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Zg6JVBH6FLwO6gj4-f7oa2uA_foPGX2gDhOREU3MEaMND9wgpAegvd3snv6ft_8vNQYAjoHb6wRwYsxJDv35JQ0MePQVDZcDtME1kPlVIsAXDWug9mz_1z0gB7t9i8swKo6g_6aKBQk/s320/Picture0360.jpg" alt="" id="BLOGGER_PHOTO_ID_5649108773776937714" border="0" /></a><span style="font-weight: bold;">After jumping through what seems like a million hoops, and going in constant circles we finally have a game plan to get my GI craziness sorted. We're on to plan "F". Part of that plan includes a port for hydration until I get the Nissen Fundoplication. After the surgery, I'll be able to use Jerome again, but he'll be a g-tube.</span><br /><br /><span style="font-weight: bold;">I had a consult with a thoracic surgeon a couple weeks ago, and luckily it went really well. I'm not going to get into it, but he got to see me when I was at my best. I was hooked up the Joey-pump and refluxing like crazy, had a killer headache and my vitals were all over the place. Based on my long and complex GI history, paired with everything else he thought it would be in my best interest to see what he could do to improve my quality of life. We're going to re-do a whole bunch of my old tests, and do some new ones so he knows exactly what's going on with me. On the way home from one of my appointments, Jerome's balloon popped so he needed to be replaced asap.</span><br /><br /><span style="font-weight: bold;">Getting Perry put in and Jerome replaced was a bit of an ordeal. I had a date booked to get Perry placed and Jerome replaced, and was called the night before saying they were going to cancel because I was supposed to have blood-work done before hand. There was no way in hell I was going to let that happen. Jerome had been sticking out and was painful for 2 days already, I didn't want to risk infection and the thought of multiple attempts to get an IV going wasn't something I could deal with anymore. It was then decided that I'd to the ER stupid early, so they could do the blood-work and save the appointment. By then it needed to be a 2 in 1 procedure and I was at the end of my rope. Luckily the ER staff were fantastic, I got fluids, blood-work sent off and the appointment was saved!</span><br /><br /><span style="font-weight: bold;">Because of my awesome body, the surgeon had a hard time getting Perry in and Jerome out. I was given an insane amount of locals and sedatives, none of which really worked. I could feel everything they were doing and it was effing painful, especially when they had to really dig at my jugular vein. It seemed to surprise everyone that despite being given so many drugs I carried on a conversation with the team in IR the whole time, then walked out of the room like nothing had happened. My iron liver isn't just from practice...</span><br /><br /><span style="font-weight: bold;">Getting Perry put in was also an opportunity for me to face some big fears and do some growing. I have some major trust issues, especially when at the hospital. Lack of trust is also another reason why I don't sleep when I'm there, and am always hyper-vigilant. I knew the 2 in 1 would be a lot for me to handle, so I swallowed my pride, fulfilled my end of a bendy friend pact and asked for help. I was very lucky to have a friend who knows her stuff come with me. She knew when I needed something, didn't smother me, and made sure I was comfortable both physically and emotionally. It was the first time I've ever felt safe enough to completely let my guard down, and just be. She took incredible care of me and is officially the first person I've let take care of, and put meds through Jerome. I'm so happy and thankful that she came.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNf6V3sG4_ciIrZ_pdaYZaqSXAJI-J7NcaqgVnOHry-KpYKPLhTHU7zeRVWtu_ceLoAR_ZP0MuHSdOMal2rWyMo32UyIeblBIpIoW6nDNgbKmOvoM9T4yA0EHZ-X0_J9hT0HoMJ4zI1rU/s1600/IV+and+Port+stuff+035.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNf6V3sG4_ciIrZ_pdaYZaqSXAJI-J7NcaqgVnOHry-KpYKPLhTHU7zeRVWtu_ceLoAR_ZP0MuHSdOMal2rWyMo32UyIeblBIpIoW6nDNgbKmOvoM9T4yA0EHZ-X0_J9hT0HoMJ4zI1rU/s320/IV+and+Port+stuff+035.JPG" alt="" id="BLOGGER_PHOTO_ID_5649108762340796114" border="0" /></a><span style="font-weight: bold;">This was taken right after I realized that J popped his balloon. A mic-key button is supposed to last anywhere from 3-8 mts. Jerome lasted 5 so I can't complain.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fv1wHeYGHTZyv_K6r8lv0GnSWZGrZbvxkZs4n0-Ji8ukilXJGchPVzzOUihOCaPGJEGtwsdaw9EQOP5jtS1p4rQqCKAeW0qfLP8SaDhgk0acAX8TGyHctdYgyt8WdA6gQSG-TqrTMvo/s1600/Picture0366.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fv1wHeYGHTZyv_K6r8lv0GnSWZGrZbvxkZs4n0-Ji8ukilXJGchPVzzOUihOCaPGJEGtwsdaw9EQOP5jtS1p4rQqCKAeW0qfLP8SaDhgk0acAX8TGyHctdYgyt8WdA6gQSG-TqrTMvo/s320/Picture0366.jpg" alt="" id="BLOGGER_PHOTO_ID_5649108769847896114" border="0" /></a><span style="font-weight: bold;">Because we replaced Jerome last minute, there wasn't enough time to get funding approval for the mic-key button. It's back to the penis Jerome until the fundo when we'll put the button back. Notice it's twisted to the side, yeah I can't untwist it. Constant tape rash again, yes please! I hate,hate,hate this tube.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjOIoS29S4jG2M2doYT491Y5Ajo6Zg92zhsPTo8AmogsqPEImrzAqx3YGl3o8PJ_pI2GRYG33X676d0-jz6P9vi6Wda3qZKL2iHQTvmaHf3lsGSXwMYPyxArw_yDL4dXbEliaKYhv7hxE/s1600/IV+and+Port+stuff+044.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjOIoS29S4jG2M2doYT491Y5Ajo6Zg92zhsPTo8AmogsqPEImrzAqx3YGl3o8PJ_pI2GRYG33X676d0-jz6P9vi6Wda3qZKL2iHQTvmaHf3lsGSXwMYPyxArw_yDL4dXbEliaKYhv7hxE/s320/IV+and+Port+stuff+044.JPG" alt="" id="BLOGGER_PHOTO_ID_5649108785546659714" border="0" /></a><span style="font-weight: bold;">Perry in all of his glory. My boob is so itchy and bruised. I'm hoping we'll be good friends and he keeps me out of the hospital.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwZ48ZKgyjDgts_E8SR-NZILfGIKngXo5sVgUFAXm4zb7g2ZrgXr9ef0cWCdqE-irEQxHt4zrEug0wf07Xs4MdfrbDFkidZtAOmHvOquFHnQrdWeGQUdPisvrNDeKZUw5oKCGe2m75Mw/s1600/Picture0364.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwZ48ZKgyjDgts_E8SR-NZILfGIKngXo5sVgUFAXm4zb7g2ZrgXr9ef0cWCdqE-irEQxHt4zrEug0wf07Xs4MdfrbDFkidZtAOmHvOquFHnQrdWeGQUdPisvrNDeKZUw5oKCGe2m75Mw/s320/Picture0364.jpg" alt="" id="BLOGGER_PHOTO_ID_5649108777505068546" border="0" /></a><span style="font-weight: bold;">No more IV's for a while, Perry will be taking one for the team. I really won't miss being poked about 9 times to find a vein for it to only last a day or two.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSUIgSBzWMnnWthc5fE0n4mKnOevfzrpm4VxFgh1NB-zZtfNLyBDoxOpvasFpASVmvrxQ8CxfRmQq9nuDxcEBUSTG2cMiru-HzPOhazx_9zxFRp-v8hpW4a8Ly1Bl0wAhaG7Ca60ZnyHk/s1600/Picture0355.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSUIgSBzWMnnWthc5fE0n4mKnOevfzrpm4VxFgh1NB-zZtfNLyBDoxOpvasFpASVmvrxQ8CxfRmQq9nuDxcEBUSTG2cMiru-HzPOhazx_9zxFRp-v8hpW4a8Ly1Bl0wAhaG7Ca60ZnyHk/s320/Picture0355.jpg" alt="" id="BLOGGER_PHOTO_ID_5649110832458243458" border="0" /></a><span style="font-weight: bold;">Jack-Jack the healing dog. He always knows when someone isn't feeling well and gives the best doggy hugs. When I came home he wouldn't leave me, and sat beside me with a look of concern in his eyes during the post-op barf-fest.</span><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie53IHzfCNOJyspKo7SyrIabNSrWj8UqPmlDp39y903BMqLWhqpzXE9FcMEZOrHgMxOmS1jRuJ9CuQvA4DEbohT7WnMs8WNfOT_tEfEPhATeEdRxwaasZBH6aJn_QNwLFLKCSOawKpizM/s1600/EDNF+conference+2011+024.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie53IHzfCNOJyspKo7SyrIabNSrWj8UqPmlDp39y903BMqLWhqpzXE9FcMEZOrHgMxOmS1jRuJ9CuQvA4DEbohT7WnMs8WNfOT_tEfEPhATeEdRxwaasZBH6aJn_QNwLFLKCSOawKpizM/s320/EDNF+conference+2011+024.JPG" alt="" id="BLOGGER_PHOTO_ID_5649110837426586066" border="0" /></a><span style="font-weight: bold; font-style: italic; color: rgb(255, 255, 153);">"I apparently provided 3 hours of entertainment and a sing-a-long during my MRIs. Everything from</span><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;" class="messageBody" ft="{"type":3}"><span>Kid Rock and Michael Jackson to a stirring rendition of Candle In the Wind (complete with alternate lyrics and giggles from the awesomest and extremely cute rad tech)."</span></span><br /><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;" class="messageBody" ft="{"type":3}"></span></div><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;" class="messageBody" ft="{"type":3}"><br /></span><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;font-size:130%;" ><span><span>"</span></span></span><span style="font-weight: bold; color: rgb(255, 255, 153); font-style: italic;" class="messageBody">So... would the MRI pics of the inside of my brain be considered zombie porn...?</span><span style="font-weight: bold; color: rgb(255, 255, 153); font-style: italic;">"</span><br /><br /><div style="text-align: center;"><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;">(S-Jo)</span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com3tag:blogger.com,1999:blog-3251345393759638797.post-65351388958210917512011-08-28T19:36:00.001-07:002011-08-29T00:53:27.277-07:00When EDS kicks everyone's butts!<span style="font-weight: bold;">If you've been wondering what's been happening in EDS land over here, I have 3 big posts in the works.</span>
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<br /><span style="font-weight: bold;">*I went to the 2011 EDNF conference with most of our Toronto/Ontario bendy posse. I Had the time of my life, and I think I can speak for a lot of the zebra's who went.</span> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuyK91p9M5yw-0NBzhYYSa2XjzMadzdtZO29nFXYicVkVal8uwehWjK4ZfEuGRbeiyNAl0bE0ay2HVAXQqddExDjN6gEY8-U02GDEUphkszBOlKt9GGOmE7t2UBf-XJGenScgd1gtgJj8/s1600/EDNF+conference+2011+041.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuyK91p9M5yw-0NBzhYYSa2XjzMadzdtZO29nFXYicVkVal8uwehWjK4ZfEuGRbeiyNAl0bE0ay2HVAXQqddExDjN6gEY8-U02GDEUphkszBOlKt9GGOmE7t2UBf-XJGenScgd1gtgJj8/s320/EDNF+conference+2011+041.JPG" alt="" id="BLOGGER_PHOTO_ID_5646173338777850690" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZfFGTggkarQpvjML1M9lH_LLg2uhbJxQXaNXtaNuccMuLC-u_vrRgWUkT-5FYSl1aQWDNBRcvVfk39B_gqOXIEXpxFdEbFMtnsg6vxWDi5HJ-y3FqQ80LJzalKv80MvYDVkr_PWVBLjQ/s1600/EDNF+conference+2011+061.JPG">
<br /></a><span style="font-weight: bold;">*In the last month, most of our Toronto bendy posse have been on ER runs and in & out of the hospital, myself included. In the last three weeks, three of our bendy posse sista's got an ambulance ride to the ER.
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<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxSkp_miWZ6JluIuz99f4rmz3AS8e6RWdPvpXNal5iHimpL3iFfl-ChcegLXbq4BxE5NAh9nL8nDWsYGxAr4nAXNhNm43fDDVhjGqb7ek-iri4EI0JBW355r__rr3uCCDYo1Rml4lht38/s1600/chateausinaiwithmissb.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxSkp_miWZ6JluIuz99f4rmz3AS8e6RWdPvpXNal5iHimpL3iFfl-ChcegLXbq4BxE5NAh9nL8nDWsYGxAr4nAXNhNm43fDDVhjGqb7ek-iri4EI0JBW355r__rr3uCCDYo1Rml4lht38/s320/chateausinaiwithmissb.jpg" alt="" id="BLOGGER_PHOTO_ID_5646110339283274370" border="0" /></a>
<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMTdNVy1r-Gr4hy_CppEr58WWZt7sWdD9WG9fKuJaO5kXa3NSGzBvgzEBagQaxFQXr-thHviFB39-es9hZJ6Qswen0bjuzSF3QC-PByyAHlU5gNhDary5TvjOG2VWRz3GedeYAB8IKK1M/s1600/photo%25282%2529.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMTdNVy1r-Gr4hy_CppEr58WWZt7sWdD9WG9fKuJaO5kXa3NSGzBvgzEBagQaxFQXr-thHviFB39-es9hZJ6Qswen0bjuzSF3QC-PByyAHlU5gNhDary5TvjOG2VWRz3GedeYAB8IKK1M/s320/photo%25282%2529.JPG" alt="" id="BLOGGER_PHOTO_ID_5646110343735727474" border="0" /></a>
<br /><span style="font-weight: bold;">*Our Toronto bendy sista Natalie passed away.</span> <span style="font-weight: bold;">She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.
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<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyXk4vDnp_eo2B9vLsfECA1koTxGMZK_iWlvUUBfUM0bYrJwT08rJVFacRZO_4orah25Uq6Oaqh9YjYuTjmkU_RYPFh7bURIggy26Sc2bCWNVeGkcM8pEYy5onpPqI2C_pN8CLcF-dqI/s1600/zebrasleepoverplants+056.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyXk4vDnp_eo2B9vLsfECA1koTxGMZK_iWlvUUBfUM0bYrJwT08rJVFacRZO_4orah25Uq6Oaqh9YjYuTjmkU_RYPFh7bURIggy26Sc2bCWNVeGkcM8pEYy5onpPqI2C_pN8CLcF-dqI/s320/zebrasleepoverplants+056.JPG" alt="" id="BLOGGER_PHOTO_ID_5646173345202712802" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYyXk4vDnp_eo2B9vLsfECA1koTxGMZK_iWlvUUBfUM0bYrJwT08rJVFacRZO_4orah25Uq6Oaqh9YjYuTjmkU_RYPFh7bURIggy26Sc2bCWNVeGkcM8pEYy5onpPqI2C_pN8CLcF-dqI/s1600/zebrasleepoverplants+056.JPG">
<br /></a><span style="font-weight: bold;">I'm so lucky to have bendy friends in my life. We all laugh at the fact that we only met a year ago and for some of us a few months ago, but we already have such a deep connection and dynamic. We each play an important role in our group that enables us to hold each other up, and provides a safe place to land when we fall. We always find a way to make the best of some very hard circumstances and know there's nothing we can't ask of each other. </span>
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<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvV_GYIaiS1cyL-TxzIDkYSkqV9pmA65ZAFnMHEP1EAfqICFRLnuVOW4lh0jSeLUIL9n7vVNUCat4DkDSJHyl1ehQ688FUF8rq5cYnq0PAH2b9r1YZHXIl6iIZN7OcxNML-koO1pOQ8KQ/s1600/283969_10150271265061870_513361869_7406873_4753417_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 241px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvV_GYIaiS1cyL-TxzIDkYSkqV9pmA65ZAFnMHEP1EAfqICFRLnuVOW4lh0jSeLUIL9n7vVNUCat4DkDSJHyl1ehQ688FUF8rq5cYnq0PAH2b9r1YZHXIl6iIZN7OcxNML-koO1pOQ8KQ/s320/283969_10150271265061870_513361869_7406873_4753417_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5646178617524159618" border="0" /></a>
<br /><span style="font-weight: bold;">Even if we ask for help to "clean" a J-tube. In all seriousness, we will leave no stone unturned in a quest to help each other out.
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<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUh2v-zcxnqPGnXYx39VIuZyWOXXurxreQyBgVg8IzZsVpjL8jE99GG837TAmB8xkBFviOrPnK1C4-Z5pjemLhH-Cla6nSksTr_GAeYIjuOGVohyphenhyphenf14rPogDwISn5zeyOzefMRzEHK7Jo/s1600/281576_10150271266361870_513361869_7406901_196731_n%25282%2529.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 241px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUh2v-zcxnqPGnXYx39VIuZyWOXXurxreQyBgVg8IzZsVpjL8jE99GG837TAmB8xkBFviOrPnK1C4-Z5pjemLhH-Cla6nSksTr_GAeYIjuOGVohyphenhyphenf14rPogDwISn5zeyOzefMRzEHK7Jo/s320/281576_10150271266361870_513361869_7406901_196731_n%25282%2529.jpg" alt="" id="BLOGGER_PHOTO_ID_5646178611487871826" border="0" /></a><span style="color: rgb(255, 255, 153);font-size:130%;" ><span style="font-weight: bold; font-style: italic;">
<br />"</span><span style="font-weight: bold; font-style: italic;" class="messageBody" ft="{"type":3}">To my Zebras: it started out as an exchange of information. Doctor talk. OHIP talk. Pain in the $@&! talk.... But... what grew out of it was the deepest of friendships any of us had ever known ♥ </span><span style="font-weight: bold; font-style: italic;">"</span></span>
<br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_lIETngVFU7TEPMamvDhyphenhyphens41IhpLAv3cmxn5VSInfFS0aCwrOEU9DEYsztGL9WXM4Z2dWCr0YKbxT9kdzf0peOo-FQhXQgBlmCqkoslp_XQHZgayL_oO5RKl8OlQJ6vfXNhZ0BU_pBvo/s1600/EDNF+conference+2011+031.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_lIETngVFU7TEPMamvDhyphenhyphens41IhpLAv3cmxn5VSInfFS0aCwrOEU9DEYsztGL9WXM4Z2dWCr0YKbxT9kdzf0peOo-FQhXQgBlmCqkoslp_XQHZgayL_oO5RKl8OlQJ6vfXNhZ0BU_pBvo/s320/EDNF+conference+2011+031.JPG" alt="" id="BLOGGER_PHOTO_ID_5646173354268861426" border="0" /></a><span style="color: rgb(255, 255, 153);">(Christie)</span>
<br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com2tag:blogger.com,1999:blog-3251345393759638797.post-27503274877811511622011-07-09T21:26:00.000-07:002011-08-05T11:11:21.067-07:00How do you measure, measure a year....<span style="font-weight: bold; color: rgb(51, 51, 51);">The adventures our lives can take over the course of a year, never fails to amaze me.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I've been spending a lot of time thinking about how dramatically different my life is now than it was last year.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Just over a year ago, I didn't know anyone with EDS. I lost most of my friends, and had given up almost everything I thought brought me happiness. I got sick with Dysautonomia, was going to get a wheel-chair, needed AFO's and put some serious thought into a G-tube. I had no idea what to do with myself, and pretty much lost all hope for anything good. I didn't trust anyone, felt like a total nuisance and completely alone.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Little did I know my life was going to change, and it was going to be for the better.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I was very lucky to be given the opportunity to go to the EDNF conference in Baltimore. I had no idea what to expect going into it, but figured I had nothing to lose. Those four days changed my life. It was then I realized that even if I didn't fit in with the rest of the world, there was a whole other community that I belonged to. A community with some of the most incredible people I know. A community that is pro-active, ridiculously supportive and a community of people who will never walk away. We have all walked that lonely road, and don't wish it on anyone. Bendy friends are vital to survival. I think if we didn't have each other our lives would plain horrible.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, I was just getting a wheel-chair and completely hated the idea of it. It was one more thing to add to the ever growing pile of braces and equipment. It was a reminder that I could no longer do the simple things most people take for granted. I hated everything about it. After talking to one of my best bendy friends about it, I realized that I had a choice. I could look at all my extra luggage and see it as something that is holding me down, or I could look at it as something that I can use with pride. I still hate the fact that I'm needing adaptive goodness, and I still sometimes have trouble accepting it all. There's no way someone can go through this and be excited about it every step of the way. Once I got over my pity for one, I committed to seeing it all differently. Using adaptive goodness essentially lets us participate in life. It lets us do more, conserves our energy and helps with pain, it's exactly what we need. We can use it as a canvas to express ourselves and send a message. It is something we can make our own, and wear with pride. Instead of being reclusive and passive, we are doing and being. Having adaptive goodness doesn't define us, but how we wear it does. We can do the walk of shame (in our cases probably hobble) or we can show the world that just because we're stuck in a body that's falling apart, it doesn't mean we can't truly live. This year, I'm really excited about getting some custom wheels. I know it will do a lot of good things for me, and I'm most definitely not the "poor girl in the wheel-chair".</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, I was freaking out about all the things that I couldn't do anymore. One of the items on that very long list was work. I had been working 2 jobs at a time for years and loving them. I quickly started losing the energy to volunteer or take on the odd care-taking gig. Eventually I had to stop working completely and start relying on everyone else. That was a giant slice of humble pie, let me tell you that. Just recently, I have un-learned equating gainful employment with self-worth. I have learned that there is no clear definition for contribution, and the ones that aren't fiscal are the ones that make us all a better person. If we give back and do what we can, there is more self worth in those acts than a giant pay-cheque.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, I didn't think I'd ever be able to even adopt and raise my kids because of the whole EDS mess. Once again the universe gave me what I needed at just the right time. At last year's conference, I met a handful of bendy friends who've adopted their kiddos. I've always wanted to be a mum through adoption, and I was so terrified of that being taken away from me as well. I know I won't be able to do things like back-pack through Cambodia or paddle with them, but it doesn't mean they'll never have the opportunity. Now I am hopeful that being a mum is something that can happen, I'll just have to find more ways to adapt. Oh, and someone who's crazy enough to help me raise them.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago I logged an insane amount of hours at appointments, in the ER and getting tests. Life with Dysautonomia began and I finally understood what being chronically sick really meant. Doctors and specialists that I originally had, started to turn me away because they didn't understand it, or thought I was beyond what they could offer. I've never fought with so many doctors in my life. Outside of all those appointments, I spent most of my days in bed. On the days when my symptoms were down to a dull roar, I could drag myself to work and barely managed to do things like grocery shopping. If I made it out of bed and was able to leave the house for 5 minutes, it was considered a good day. I resigned myself to life being that way forever and began to lose interest in everything. After months and months of trouble shooting, ER runs and hospital admissions we finally figured out exactly what my body needs. I began to start feeling better and being able to really live again. I can now say that it's totally possible to come back from a Dysautonomia crash, and riding it out is worth it.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, I had a pretty incredible 5 year plan, and was bound and determined to make it happen on my own terms despite being sick. EDS and Dysautonomia had other things in mind and wreaked complete havoc on my body. Those plans are still on hold, but now I'm really starting to see why...I needed to accept that I was disabled and sick so I could redefine my new life. I needed to grieve my old life, let it go, and start over again.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, my family didn't understand EDS and the concept of me being sick. I had a really hard time being around them, it felt so awkward and uncomfortable. I was getting looks and statements of pity, told that I didn't have EDS and was being lazy. I was told to be glad that I was born with it, instead of it just happening. My favourite one was that I had thrown away my money using natural medicine and that doctors were always right. The absolute worst was the constant comparisons between my twin and I. It never ended. To this day, there are still questions about why I "suffer more" but the answer will never change. I think the really big turning point was when the constant trips to the ER started happening, when I got a wheelchair, AFO's, Jerome and I finally gathered the courage to introduce them to this blog. I have learned to speak up when someone says something out of line, or still tries to "help" me when I have clearly expressed that if I need it, I will ask. The one thing that still drives me absolutely insane is that they can't step back to let me do things for myself. There is always insistence that I can't do something because I'll hurt myself, leaving them feeling guilty. News flash!!!! I hurt myself sleeping, injuries can't be avoided. Get over it. I know they have the best intent for me, but what they think is best and what's really best are sometimes two completely different things. Showing them that I'm okay, and that I have my bases covered all the time is what seems to have made the difference. Being banned from the hospital when I'm inpatient probably has something to do with it too. There's no way I could ever put up with it, so they get one phone call a day until they learn to chill out.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A year ago, I didn't think it would be possible to make new friends who would be accepting of me and my EDS. Forget about any relationships, I was certain that no one would be interested in a girl who was sick. I know EDS doesn't define who I am, but I won't deny that it plays a role in absolutely every decision and action I make. I was most terrified that if I made new friends, they'd walk away like almost everyone else, because having a sick friend was to much to handle. I am so glad to say that I was completely wrong. I've made a bunch of really good friends. Friends who haven't walked away despite all the EDS induced craziness. They understand it as much as anyone can, and are always going out of their way to make my life easier. There is no judgment, criticism of how I'm choosing to live, or hard feelings when I have to cancel plans. The best part is that for the first time in my life, I feel like I truly belong. I am with the right people. I have learned to trust again albeit very slowly, understand that people want to help me, and that it's not out of obligation. I've learned that there are guys out there who will see me for me, and all the EDS stuff is a minor detail. It still blows my mind, but that's for another post. The friends in my life now only dish out love, kindness, compassion, respect, honesty, humor and positive thoughts.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">As I reflect on my past year and the gong show that it was, I wouldn't change anything about it. This road has most definitely not been easy or fun, but it has been filled with the lessons in life that I desperately needed to learn. When something goes "wrong", I've realized that it's actually going right and there's a reason for it. The most important lesson I've learned is to trust my instincts and not to worry about what the rest of the world is doing. My life appears to be in shambles and despite that, I am happier now than I have ever been. Take that negativity!!</span><br /><br /><br /><div style="text-align: center;"><div style="text-align: justify;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuc9DfZghRVb2ydIJjTqYgTPQRBkvuHg2EkJpzrJDvRZvcV1oIVcF3PRKFvUndcQUhclu_KcjtmynvpbS0yXccqnbsashQXK_NSHq9gsP-S38e-GSc0ZFOJ7T4Y3Qopjg-kDUN4DC1TP0/s1600/EDNF+conference+2011+029.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 310px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuc9DfZghRVb2ydIJjTqYgTPQRBkvuHg2EkJpzrJDvRZvcV1oIVcF3PRKFvUndcQUhclu_KcjtmynvpbS0yXccqnbsashQXK_NSHq9gsP-S38e-GSc0ZFOJ7T4Y3Qopjg-kDUN4DC1TP0/s320/EDNF+conference+2011+029.JPG" alt="" id="BLOGGER_PHOTO_ID_5637274828251693266" border="0" /></a><span style="color: rgb(255, 255, 153);"><span style="font-size:130%;"><span style="font-style: italic;"><span style="font-weight: bold;">"You have brains in your head.You have feet in your shoes.You can steer yourself in any direction you choose.You're on your own.You know what you know. And YOU are the one who'll decide where to go."</span></span></span></span><br /></div><span style="color: rgb(255, 255, 153);"><span style="font-size:130%;"><span style="font-style: italic;"><span style="font-weight: bold;"><br /><span style="font-size:85%;">(Dr.Seuss)</span><br /></span></span></span></span><a title="Click for further information about this quotation" href="http://www.quotationspage.com/quote/25993.html"></a></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com2tag:blogger.com,1999:blog-3251345393759638797.post-75365022555914670362011-07-03T19:12:00.000-07:002011-07-03T19:12:11.756-07:00Flippity, floppity. Copy+ paste.<span style="font-weight: bold;">I've got 6 posts that are all on different topics, all half written.</span><br /><span style="font-weight: bold;">This pretty much sums up the past couple weeks. It's another copy+paste post!</span><br /><br /><span style="font-weight: bold;">So after recovering from my stay at Chateau Sinai, and digging myself out of the pit of doom, my GI system has decided to wreak havoc again.</span><br /><span style="font-weight: bold;">I'm back to refluxing anything that I eat or put through Jerome.The last two days have been a barf-fest as well. Extra-strength 24hr Gravol has nothin' on me.</span><br /><br /><span style="font-weight: bold;">I'm not exactly sure what to do other than to try and ride it out. I don't have the energy to go back and end up inpatient right now. The last visit ended up going okay, but it sucked the life out of me. I had to do a lot of fighting. Because of my wacky body, I've got to be hyper-vigilant because stupid mistakes happen all the time, and it can be really dangerous.</span><br /><br /><span style="font-weight: bold;">If the whole thing doesn't improve over the weekend I'll go back because really, I don't have a choice. I need fluids.</span><br /><span style="font-weight: bold;">It would be awesome if I could get the fundo surgery right away...although odds of it happening are pretty slim. Chances might be better if I go to a different hospital (Toronto Western) where one of my referrals went to, but no one knows me there. I'm still waiting to hear back from everyone I got a referral for. Waiting sucks.</span><br /><br /><span style="font-weight: bold;">Otherwise everything else is good. I started using the Percocet so I'm taking 1-2 every 24hrs with Gravol. It's not what I wanted in terms of being able to avoid drugs, but my quality of life is so much better. I'll take it around 7pm, so I can enjoy some time being in less pain before I go to bed. It's so nice to go to sleep without my ribs and back hurting when I breathe, or feeling like I'm being gnawed on by some invisible jaws. I end up getting a really good sleep and waking up without difficulty. I've been able to have some of my life back and can do things like protest, spend the day outside with my friends and take the dog for 2hr walks through the ravine everyday.</span><br /><br /><span style="font-weight: bold;">Oh yeah, I've got foster-dog. His name is Jack and he's awesome. He will not leave my side when I'm feeling gross, and cleans up all the chip crumbs in my bed. He seems to get that things aren't quite right with me, and is really careful around Jerome along with my adaptive goodness.</span><br /><br /><span style="font-weight: bold;">After wrapping my head around the fact that I'm more sick than I'd like to believe, I've been meeting with social workers so I can get what I need. I shouldn't have to much trouble getting the new feeding pump, jerome 2.0's, adaptive goodness and accessible housing. Crossing my fingers!!!!</span><br /><br /><span style="font-weight: bold;">I've started learning Reiki, and practice everyday. Energy work is pretty awesome stuff, I can't wait to see what happens with it.</span><br /> <br /><span style="font-weight: bold;">Here's to hoping my next e-mail won't be sent from the hospital, but on a day when I'm feeling like a million dollars. It could happen....</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjddAl1pJZPvN9jvTys-wR8Uy90-rJobwOx_Vfxm504FA2gua3ANU45Y6OqtWK4plN-pjmO_jU9NiXE26mYFoPX5ELv0eiyBORvIaiTYbQQBURPZhLFbLyI9p8Qxml5L_NCZq2i6fTmRZw/s1600/Picture0318.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjddAl1pJZPvN9jvTys-wR8Uy90-rJobwOx_Vfxm504FA2gua3ANU45Y6OqtWK4plN-pjmO_jU9NiXE26mYFoPX5ELv0eiyBORvIaiTYbQQBURPZhLFbLyI9p8Qxml5L_NCZq2i6fTmRZw/s320/Picture0318.jpg" alt="" id="BLOGGER_PHOTO_ID_5625312056205410226" border="0" /></a><span style="font-weight: bold;" class="fbPhotoCaptionText">Dear: Jack Attack, thank you for keeping me company and cleaning up all my chip crumbs. You're more than welcome to lay in my bed all day. I have lots of those...<br /><br />p.s. I'm glad you had a bath.<br /><br /></span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH3jU8qBKvTai7gkaB5feqh04bZqO0FEso9BlSV9LJbxLW__pKgpGezCZwfIlpcTHJwHFymCo-v9txxFXx7YtZowRpqzPqYClTqq4EPZdmzYwtJp1bdmvsjA_72qRJ-rhQVQBBF47Q7Gs/s1600/Picture0324.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH3jU8qBKvTai7gkaB5feqh04bZqO0FEso9BlSV9LJbxLW__pKgpGezCZwfIlpcTHJwHFymCo-v9txxFXx7YtZowRpqzPqYClTqq4EPZdmzYwtJp1bdmvsjA_72qRJ-rhQVQBBF47Q7Gs/s320/Picture0324.jpg" alt="" id="BLOGGER_PHOTO_ID_5625312049277910658" border="0" /></a><span style="font-weight: bold;" class="fbPhotoCaptionText">Not only does Jack Attack clean up my chip crumbs, he's fine with my didgeridoo and loves the<br />hammock. It's tough being Jack....</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3NuXsemxB_28-xSDU-OC9TcTxdoqZAIuLc9Tq4mhxZqwwUPpJ-ArcUi5WsOm9qkl03Z27mjWS2A4wryssrpnQ78yUl3v6C8ZSa9TLTHN8HsLaQPJGeuH5ZYm3ijVM1C75fIL-a2TgOU/s1600/jackjack1+015.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3NuXsemxB_28-xSDU-OC9TcTxdoqZAIuLc9Tq4mhxZqwwUPpJ-ArcUi5WsOm9qkl03Z27mjWS2A4wryssrpnQ78yUl3v6C8ZSa9TLTHN8HsLaQPJGeuH5ZYm3ijVM1C75fIL-a2TgOU/s320/jackjack1+015.JPG" alt="" id="BLOGGER_PHOTO_ID_5625312046270500418" border="0" /></a><span class="fbPhotoCaptionText"><span style="font-weight: bold;">My name is Jack-Jack.</span><br /><span style="font-weight: bold;">I like going for long walks in the ravine, cuddling, being Nakki's shadow, and fighting coons. Oh, and I really like big fluffy dogs. Nakki tells me to be a gentleman and stop humping them, but I just can't help myself.</span><br /><br /><br /><span style="color: rgb(255, 255, 153);font-size:130%;" ><span style="font-weight: bold; font-style: italic;">Do your joints hang low, do they wobble to and fro, can you tie 'em in a knot, can you tie 'em in a bow? Can you hang them over your shoulders like a continental soldier, do you joints hang low?</span><br /></span></span>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com3tag:blogger.com,1999:blog-3251345393759638797.post-69323186275245571532011-06-12T20:26:00.000-07:002011-06-12T20:38:19.584-07:00The pain in my......<span style="font-weight: bold; color: rgb(51, 51, 51);">Who knew an e-mail that was to be sent to my holistic medicine peeps, would turn into a blog post...It's time for another edition of copy+paste.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">So I have absolutely no intention of coming off as a drama queen, or a whinger. I've been in an insane amount of pain since the hospital (it started when I went off the supplements), and haven't really slept since. It's hard sleep when you feel like the things they use to resurface a road is rolling over you. Over the last 3.5 days of living from the hammock, couch ,bed or tub I've come to a little revelation.If I could only take my own advise...</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">With all of regression I've had over the years, especially with the last two being really grueling, I'm thinking it's time to start looking at using pain killers in addition to our arson of super-powers. My stay at Chateau Sinai gave me a pharmaceutical that works and doesn't make me sick like all the others. It's Percocet...It takes the edge off (I only took 1/2 dose) and I can either crush it up and put it through Jerome or chew it.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I've had a bottle of it sitting around for a couple of years and have been terrified to take it. Fear was the biggest reason why I've done dental surgery and two J-tube surgeries without any pain-killers post-op. I guess the good thing about it, is now I'm not afraid of pain, and I can handle intense/localized pain with breathing and being still. It really comes in handy when anesthetics don't work or are dangerous. At the hospital I had a lot of time to think and process, and I've realized that this shit isn't getting any better and symptomatically I'm having a lot more bad days. Pain flares that were once uncomfortable joints and muscles that lasted a couple days at most, have turned into days spent laying on the floor puking at it's worst. As my joints have become more bendable and my tissues doing their own thing, holding my body together is exhausting and painful on a good day. There are days when I can almost function like a normal human, but they don't happen often. Absolutely every movement I make results in a painful consequence, requiring me to spend unnecessary energy evaluating, organizing and using purposeful movement to make it through the day.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Dysautonomia makes everything so much harder to deal with, because of my inability to always regulate sensory input and react to it normally. Some of the tricks that helped with pain no longer work, or are contraindicated. Hot baths are the best thing in the world, but dysautonomia doesn't like it, and having temperature regulation issues, tachycardia, blood-pressure drops and black outs aren't exactly safe. Or fun. Because of my insanely high pain-tolerance I don't really get much relief from my TENS machine anymore, things like ice and heat help but they're short-lasting and I burn or freeze my skin. Adaptive goodness helps, but an exoskeleton can only do so much and after a while braces do get painful. Treatments are my favourite thing,they're really effective and have saved my life. However, sometimes they're short lasting and at most take the edge off (on those laying on the floor puking days).</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I think I spend so much energy on slapping a smile on my face,moving forward and finding possibility that I forget, or rather choose not to look back. That means I can't always gauge my symptoms over long periods of time. So many crazy things are happening all the time, I forget so much of it. During consults and follow-ups when actually I listen to what I'm saying, I realize that none of it is anywhere close to normal and it's not any way to live. Because I'm always in pain (except for when I'm floating in a warm pool) it's just part of life. What I forget, is that pain and exhaustion are not a normal parts of life, never mind the days spent in agony. There isn't much left on the "can do" list, and pain essentially makes me give up being able to really live. I don't ever expect to be able to paddle, climb, play soccer, work, taiko drum or have a real girls night out again; but I would like to maybe get back some of the things that aren't so out of reach. Things like being able to propel myself in a wheelchair, walk around for a few hours, more upright and unsupported sitting ,cooking and baking from scratch, writing more than a few sentences and just going out with my friends.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">One of my bendy friends compared having EDS to being tortured everyday for your entire life. She's pretty accurate...I haven't really started on the osteoarthritis thing yet or all the craino stuff, and I know I have a lot to look forward to. I'm so fortunate and lucky to be only affected the way I am, when some of my bendy friends are running out of pain-killer coctails, getting spinal-cord stimulators implanted and even thinking of amputation. All because of pain.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I think it's time to swallow my pride, take my own damn advise and do what I have to. Start with the Percocet so I can live my best life.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">As for the hospital stuff I'm getting a referral to a surgeon who does the fundo at Toronto General or Western I think...I don't know, I'm at them all for one thing or another. And I'm also getting a referral to a new GI specialist who I've been told is fantastic. I'm pretty sure I want to go with the surgeon on Hamilton though because he's bad-ass at fundo's and takes EDSers. That means he's educated in it and can keep me pretty safe. I'm hoping I won't need to advocate and be on top of things as much. This last stay there were 3 dangerous mistakes that could have been avoided if they took things more seriously and paid attention. 1) I wasn't getting enough fluids for until I raised all hell 2) They wanted to give me blood thinners (because they give them to everybody to prevent clotting), I'm a bleeder, spend just as much time in bed and am ambulatory. It was offered everyday. 3) Gave me test results that were from when I was inpatient in January and wanted to start a treatment plan from it.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I do NOT give the hospitals consent to:</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">1) Give me medication without informing me what it is, and asking if I want it.</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">2) Put anything up my ass.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Jerome is back to normal and taking the 300mls/hr and feeds with a little refluxing, but not the craziness it was before. Dysautonomia has calmed down as well.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I think what happened was the medications didn't do anything for symptoms and I reacted to them which made the dysautonomia even more crazy. Sound logical?</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">And now I just re-opened the wound, woot! At least this didn't happen in the hospital...</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">A bendy friend Barbra passed away this week. Our Toronto bendy posse friend Michele is fightin' like it's nobody's business, her intestine ruptured and most of it had to be removed. During surgery her spleen got knicked and bled out, so it had to go as well. The EDS and Dysautonomia community has been slammed in the last month, so in the words of my bendy friend Tiffany:</span><br /><div style="text-align: center; color: rgb(255, 255, 153);"><span style="font-size:130%;"><span style="font-weight: bold; font-style: italic;"> "Dear: EDS, FUCK YOU! YOU FUCKER!!"<br /><br /></span></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgccGFyrSZ4Doj9Xq3XguRllOFcuJmcPgZ-DVNvXLgix3VmVcWNScsZX94-QO1lAHxtJesuCZij6u0I6kzqaVjPCEd_5gInZnkP3ZL-IZnJbbOnSmExcQs2TU1vMqVritR8dW4ZjyiWpMY/s1600/Picture0307.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgccGFyrSZ4Doj9Xq3XguRllOFcuJmcPgZ-DVNvXLgix3VmVcWNScsZX94-QO1lAHxtJesuCZij6u0I6kzqaVjPCEd_5gInZnkP3ZL-IZnJbbOnSmExcQs2TU1vMqVritR8dW4ZjyiWpMY/s320/Picture0307.jpg" alt="" id="BLOGGER_PHOTO_ID_5617541449613174386" border="0" /></a><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com4tag:blogger.com,1999:blog-3251345393759638797.post-73302719153218650422011-06-03T16:47:00.000-07:002011-06-03T18:58:51.462-07:00Staying at Chateau Sinai again<span style="font-weight: bold;">Bleh, I'm at Chateau Sinai for the insane reflux stuff.</span><br /><span style="font-weight: bold;">It got too crazy for me to handle at home and I couldn't deal with it anymore.</span><br /><span style="font-weight: bold;">I've got a lot to write about, so an epic post will be coming soon. </span><br /><br /><span style="font-weight: bold;">In the mean time you can check this out....</span><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyAH76giO7fU6Q8qxs1dEXlhvk5fxJxmsyPOKHBbRZWnEABrg9LNcMVu6t10Ycuopp2GALIjyq0o4dHJTamTg' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><div style="text-align: center;"><span style="font-weight: bold; font-style: italic; color: rgb(255, 255, 153);font-size:130%;" >"Do you want me to bust you out tomorrow at lunch-time?"</span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com1tag:blogger.com,1999:blog-3251345393759638797.post-91826476945842150482011-05-29T08:35:00.000-07:002011-05-29T13:25:50.401-07:00When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.<span style="font-weight: bold;">As you can tell, it's been a blast and I've had the time of my life.</span><br /><br /><span style="font-weight: bold;">With the Zofran I only ended up with all the side effects, and no relief. </span><br /><span style="font-weight: bold;">It messed up my skin and turned me into a bleeder, everything seemed so fragile. </span><br /><span style="font-weight: bold;">Jerome 2.0 had finally healed and the burn on my butt was coming along. I started the Zofran, and my skin was not happy. I ended up with friction rashes from my clothes, heat rash, peeling skin on my hands, scrapes in my mouth and on my tongue from food that was "sharp", and Jerome opened up again. My skin also didn't want to tolerate IV's for more than a day at a time. There was other stuff going as well, but I don't want to get into it. Now, my skin is healing from all of it. When I was at Chateau Sinai in January, on the 2nd day my skin from the entire bottom of both feet peeled off in the shower, gross I know. It seems as though my skin hates GI meds.</span><br /><br /><span style="font-weight: bold;">Anyway, my quality of life sucked, and with symptoms being gross in a normal person; with ESD everything is so much worse on top of what we already have to deal with. For example the rate of healing is 6x's slower, and the rate of infection is 6x's higher. No to mention an incredibly low success rate with pharmaceuticals, and just about everything else. So on day 4, I decided to scrap the Zophran plan. We do have a couple other drugs that can be tried, but their side effects are more brutal. I've already tried the top 3 without success, and pretty much everything in between. This is the girl who's been taking stuff for reflux since age 11, slowly knocking them off of the list because they stop working.</span><br /><br /><span style="font-weight: bold;">For now I'm still feeling the same, and trying not to get discouraged...but am getting a little bit of respite here and there. The rest of my body is okay, my joints aren't happy but it's hurting Jerome to put them all back and I really want it to heal. I guess you should also know that my body is tolerating alcohol much better than food and fluids. I have NO idea why. I said "eff it" and went to a bendy party where vodka was my friend. I figured since I wasn't feeling any better, I might as well make it worth it so J had a few drinks. To think of it, I've never refluxed on it. Hmmmmm.</span><br /><br /><span style="font-weight: bold;">Then I tried the Scopolamine patch . It was a complete disaster, I only had the side-effects and no relief. Surprise!!!! It ended up being really scary because I thought I was having a bad dysautonomia crash, and was very close to calling an ambulance. I've never had to do that, and have never felt that shitty before. </span><br /><br /><span style="font-weight: bold;">Drowsiness, confusion and disorientation hit me pretty hard. I felt like I was in a constant state of coming out of sleep paralysis and really had to fight to stay conscious and oriented. I have sleep paralysis all the time, but I couldn't come out of it no matter what I did. I was also really shaky and weak.</span><br /><br /><span style="font-weight: bold;">Dry mouth was horrible, no matter what I drank, how much fluids I put through J, or how many tic-tacs, lollipops I consumed, I had insane pasties. It also made my secretions really thick and I was constantly choking on it. It wasn't just dry mouth, it went all the way down my throat and esophagus. I thought I had food stuck in there and nothing made it go away.</span><br /><br /><span style="font-weight: bold;">Blurred vision and dilated pupils were interesting. I woke up, and couldn't see in front of me. Everything was so blurry, I was seeing double and my depth perception sucked. I was really light sensitive and had a hard time looking at anything. The dark was my best friend. I had the brilliant idea to decorate my new neck brace with Sharpie markers, it looks horrible hahaha.</span><br /><br /><span style="font-weight: bold;">I was retaining fluids like it was nobody's business. I think I finally had to pee after 2L of fluids concoction...yeah a bladder isn't suppose to hold that much but I'm stretchable...</span><br /><br /><span style="font-weight: bold;">The spins and blood-pressure drops were insane. I had a really hard time going from laying to sitting, or sitting to standing. As soon as I did any of that my BP would drop, I'd black-out, sometimes fall, and was really dizzy. Then the tachycardia would start and I'd get really bad pain in my brain as my body was trying to get the blood back. Then I ended up with a killer migraine. I crawled everywhere I went, because getting up was so difficult. </span><br /><br /><span style="font-weight: bold;"> All of those were side effects, but they present exactly like a dysautonomia crash and some of them like a neuro issue. Since EDSers are prone to blood-vessel rupture and all kinds of crazy neuro things, I didn't know what to think and was scared shit-less. When you've seen your bendy/dysautonomia friends go into complete autonomic failure ending up on life-support, or dying from ruptures, it doesn't take much to shake you up. I had 3 days of that fun stuff, and I never want to do it again. It's a good thing I woke up today feeling better, otherwise I would have gone to the ER. </span><br /><span style="font-weight: bold;"> </span><br /><span style="font-weight: bold;">As for the GI stuff, it's still all the same. Constant reflux, upset stomach and if I'm lucky I can get food to stay down. So it's looking like it's back to the drawing board, however I think taking a break from the pharmaceuticals would be a good idea right now. We've pretty much tried everything, and I'm tired of feeling extra-gross, it doesn't do anything for my quality of life. How strange is it that I actually get excited for surgery, that fundo can't come soon enough! First we have to find someone to do it, haha.</span><br /><br /><div style="text-align: center;"><span style="color: rgb(255, 255, 153);font-size:180%;" ><span style="font-weight: bold; font-style: italic;">"Jerome just probably needs some more vodka."</span></span><br /><span style="font-size:78%;"><span style="color: rgb(255, 255, 153);">(Bendy friend Tiffany)</span></span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-21717431434213002592011-05-25T14:26:00.000-07:002011-05-27T15:35:29.171-07:00It's a EDS Zebra Sleep-Over Party!<span style="font-weight: bold; color: rgb(51, 51, 51);">Once upon a time, princesses from the Ontario EDS posse got together for a sleep-over party. It was their girls night in, since going to the ball was not something they could do anymore. That's okay, because princesses can party like it's nobody's business in their own EDSy way.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDNTaHRt-MjhN9yctPU6BZND25RrdV2PglW9QMrm6HwK6Pr6e7pxFKnf5ucva22Ve7z3iQEA1ZooOhdr6eBQ3ZDhTSXyFtvOz10GsU1PpAHzlnaj0xYo70EpcdbxW-_ZqdJbq3K33hmdM/s1600/zebrasleepoverplants+025.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDNTaHRt-MjhN9yctPU6BZND25RrdV2PglW9QMrm6HwK6Pr6e7pxFKnf5ucva22Ve7z3iQEA1ZooOhdr6eBQ3ZDhTSXyFtvOz10GsU1PpAHzlnaj0xYo70EpcdbxW-_ZqdJbq3K33hmdM/s320/zebrasleepoverplants+025.JPG" alt="" id="BLOGGER_PHOTO_ID_5611037648068063122" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Our wonderful hostess princess Chuckles decorated the ballroom with flowers, balloons, a whole bunch of disco-balls and accessories for everyone. It was also the night of the supposed "rapture", so the princesses wanted to make sure their fate was sealed.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBUPnQHDUMiP_N3nv-PNA7BiENbwUcGcN3n59CxogfjXUIOrfXbsH5G6xxW-y2bZRXRdGhm_xSlw8aG6gGiudS-3KCVwQ2wLdZUut95nQlgO692lGGUheT44-LlhTjtomS2le52q6eDys/s1600/zebrasleepoverplants+153.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBUPnQHDUMiP_N3nv-PNA7BiENbwUcGcN3n59CxogfjXUIOrfXbsH5G6xxW-y2bZRXRdGhm_xSlw8aG6gGiudS-3KCVwQ2wLdZUut95nQlgO692lGGUheT44-LlhTjtomS2le52q6eDys/s320/zebrasleepoverplants+153.JPG" alt="" id="BLOGGER_PHOTO_ID_5611037642866157858" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">She also made grab-bags filled with the perfect items for a zebra princesses spa.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDh6GU-Na24ePiC5OKzsTXgChOLirvXofeegIT1nw5lCufc2Q5zZKiw5kjq-71ThttJthQkoB4RWlRTEftgvnfRiR_N8i4oISZo6N0ZuifqcMDS-4eFok73reS_8pCCn2EeF9KNIkiEg/s1600/zebrasleepoverplants+027.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 229px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDh6GU-Na24ePiC5OKzsTXgChOLirvXofeegIT1nw5lCufc2Q5zZKiw5kjq-71ThttJthQkoB4RWlRTEftgvnfRiR_N8i4oISZo6N0ZuifqcMDS-4eFok73reS_8pCCn2EeF9KNIkiEg/s320/zebrasleepoverplants+027.JPG" alt="" id="BLOGGER_PHOTO_ID_5611037634512698210" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">The princesses were served the most delectable gluten-free cupcakes, they all had at least three.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbhroHQrJsMkEI1OQ6_3PvgiLs6bZatUU68RP8XEqTp96i-enxKQJV7DqsGsguzmuaYqJAjP2VRyM78KIdh-qfExCYXz-gSQ3JqVs6AIapO_6EBRLft48mTirEMVOj3qq8tkn-NT9Wpcs/s1600/zebrasleepoverplants+028.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbhroHQrJsMkEI1OQ6_3PvgiLs6bZatUU68RP8XEqTp96i-enxKQJV7DqsGsguzmuaYqJAjP2VRyM78KIdh-qfExCYXz-gSQ3JqVs6AIapO_6EBRLft48mTirEMVOj3qq8tkn-NT9Wpcs/s320/zebrasleepoverplants+028.JPG" alt="" id="BLOGGER_PHOTO_ID_5611037626723625026" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Candy was also on the menu, commonly known as princess fuel.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_GUOvjGbB3bl946WMaonJt2XetnxXVxxHCokrCHdhzxpGgnIScJZNVDpprFtKraGcAWaAKl9HpdW2JfXH_Uf6YondQg7UuSy7K1i0R5Q36ReWktp6z4yzVlKXV5nsbd6ESjEgO9f1raM/s1600/zebrasleepoverplants+078.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_GUOvjGbB3bl946WMaonJt2XetnxXVxxHCokrCHdhzxpGgnIScJZNVDpprFtKraGcAWaAKl9HpdW2JfXH_Uf6YondQg7UuSy7K1i0R5Q36ReWktp6z4yzVlKXV5nsbd6ESjEgO9f1raM/s320/zebrasleepoverplants+078.JPG" alt="" id="BLOGGER_PHOTO_ID_5610840657285183010" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">There was talk of bacon flavored cupcakes and lip-gloss, all essential in a princesses day.</span><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtm6u6kYb702EY-JQhozuri8Hth5jyhUm9YZsDZm8vdEUcUtYzJGU5SiUeXqQHoJ8HYiAl_6JVa_USogMwj4hS2L1NnF8l66nrN5h8v39L3tcgbDUaDukXRnnLElro8s7IOlulucvtLpc/s1600/zebrasleepoverplants+036.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtm6u6kYb702EY-JQhozuri8Hth5jyhUm9YZsDZm8vdEUcUtYzJGU5SiUeXqQHoJ8HYiAl_6JVa_USogMwj4hS2L1NnF8l66nrN5h8v39L3tcgbDUaDukXRnnLElro8s7IOlulucvtLpc/s320/zebrasleepoverplants+036.JPG" alt="" id="BLOGGER_PHOTO_ID_5611108999375878770" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">In a few weeks, these princesses will be going to Nakki's orthotist for a consult and casting to get some glass-slippers for Chuckles. Everyone else in the kingdom calls them AFO's. They aware that princess Nakki knows her stuff and won't take any crap. Hopefully, it will make finding those slippers much easier for princess Chuckles. Otherwise, they're going to have to deal with the wrath of princess Nakki and it's not pretty !!!</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLD4tght7Y4xSBnNTNnCkGwb6bda-zzjGCXVF1V0pzpk-wJPmJa0I8JZGNku3voymAwnIanKLZB7cT4jFyOoVGdpkrcgwYgAaUI2wCn4yB0uiqxmhETjQkk_GENjBy6mAqkU3zD4zNmDY/s1600/zebrasleepoverplants+048.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLD4tght7Y4xSBnNTNnCkGwb6bda-zzjGCXVF1V0pzpk-wJPmJa0I8JZGNku3voymAwnIanKLZB7cT4jFyOoVGdpkrcgwYgAaUI2wCn4yB0uiqxmhETjQkk_GENjBy6mAqkU3zD4zNmDY/s320/zebrasleepoverplants+048.JPG" alt="" id="BLOGGER_PHOTO_ID_5610840637081606274" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">In the land of Baltimore last summer, the princesses were introduced to the Apples to Apples game. It was very popular among the other zebra royalty.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgriy43nPzsPzhpm0RO7AV-EmWYK32AMe1iwLMKi0QXDy6gEnWnY4Vwj07mwG1QhSb1DODjkSYjag2K2NhtMPZlOvmUg9RKgvXJVc9qAjPyCf51yx0rGDpVbPQB-M6BS4WXqweq3j6DZhQ/s1600/zebrasleepoverplants+059.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgriy43nPzsPzhpm0RO7AV-EmWYK32AMe1iwLMKi0QXDy6gEnWnY4Vwj07mwG1QhSb1DODjkSYjag2K2NhtMPZlOvmUg9RKgvXJVc9qAjPyCf51yx0rGDpVbPQB-M6BS4WXqweq3j6DZhQ/s320/zebrasleepoverplants+059.JPG" alt="" id="BLOGGER_PHOTO_ID_5610840632190944226" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Guess which princess came out of nowhere and beat everyone. She's really a ninja in disguise.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYVKT5ZLKqwNieiMJtj9n4VbRIE2acr47mUfxz4RrFLha9-hs2Zlovs3BdJD92w9LWzFiHmRGth_Ba6gNGAJWtO6MIv5av-ZY1WyCt8CuR-eL5_QG10zsqueohaD9XBYLVUOCefOBjOk/s1600/zebrasleepoverplants+056.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYVKT5ZLKqwNieiMJtj9n4VbRIE2acr47mUfxz4RrFLha9-hs2Zlovs3BdJD92w9LWzFiHmRGth_Ba6gNGAJWtO6MIv5av-ZY1WyCt8CuR-eL5_QG10zsqueohaD9XBYLVUOCefOBjOk/s320/zebrasleepoverplants+056.JPG" alt="" id="BLOGGER_PHOTO_ID_5610838813908807906" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Tiara's are a MUST at royal balls such as these.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx-56d8HBTl8slnrYKbFlMOFRmkGHBKTR-6i-aTfdKaVCmTFJHp7okFP9j2v8h6Y8kW2c8p0-YR_S7Qz9bcuSCNhui-2rxapTtKHpgJsgEqyDZ36NB9KDy_OAmhxIUah_Jx6dPsaDo3nM/s1600/zebrasleepoverplants+062.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx-56d8HBTl8slnrYKbFlMOFRmkGHBKTR-6i-aTfdKaVCmTFJHp7okFP9j2v8h6Y8kW2c8p0-YR_S7Qz9bcuSCNhui-2rxapTtKHpgJsgEqyDZ36NB9KDy_OAmhxIUah_Jx6dPsaDo3nM/s320/zebrasleepoverplants+062.JPG" alt="" id="BLOGGER_PHOTO_ID_5610838804052535234" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">The term "night out" is used loosely among these princesses. A night out to us, is a night out of bed and somewhere else besides the couch.</span> <span style="font-weight: bold;font-size:85%;" >(Read the label on the bottle)</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ-JmIJYcETzYAtgfQxmHaCqmsbTUyr5dd3qfNZr1jyqAvUNi1dBX2gx-eb7rIJR94I1W36r9ranJEOyy3I1HP0hn3duV7Sx1XKUbbV0u1-FK-eAs6mZRUxpn-toaLRUf0XZYnVro6N5E/s1600/zebrasleepoverplants+046.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ-JmIJYcETzYAtgfQxmHaCqmsbTUyr5dd3qfNZr1jyqAvUNi1dBX2gx-eb7rIJR94I1W36r9ranJEOyy3I1HP0hn3duV7Sx1XKUbbV0u1-FK-eAs6mZRUxpn-toaLRUf0XZYnVro6N5E/s320/zebrasleepoverplants+046.JPG" alt="" id="BLOGGER_PHOTO_ID_5610838796390475202" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Being a princess is hard, it takes some major dedication and team work to polish off all of those Jello-shots, there were a ton.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP2Jvn5QS5-uIgb5c6yzRKT5XqsTmUeZyMg7BZMIYQSklzzDBy9yUNnzZFmxLTA4XHXfxNSKlWfJiXjonoPspjIeInTDsEst3bONQYZ4bK8T02J_mGHFAEp3yKPK8_yWnllwMI53fX8TQ/s1600/zebrasleepoverplants+111.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP2Jvn5QS5-uIgb5c6yzRKT5XqsTmUeZyMg7BZMIYQSklzzDBy9yUNnzZFmxLTA4XHXfxNSKlWfJiXjonoPspjIeInTDsEst3bONQYZ4bK8T02J_mGHFAEp3yKPK8_yWnllwMI53fX8TQ/s320/zebrasleepoverplants+111.JPG" alt="" id="BLOGGER_PHOTO_ID_5610838792111829954" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);"> Princess Nakki met Princess Smiles last year after they both had appointments at the royal hospital. These princesses don't need much of anything in order to be comfortable, just a floor. They have laid down pretty much everywhere, including the time they went to see the Dalai Lama. When they were in the land of Baltimore for the EDNF conference, the princesses we so excited to see lots of other bendy friends laying on the floor. Cause' that's how we roll!</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMb14E0Lcu_iUqcLZ8hrXqAiWmBzQzKz5tlPx1XucYbjS_rb5xDrtVIhPZ9kNOyiRsuGta9a2hXr4WgJTGjvIGyqebCFVxOK0sdD0BQyAvGdadvKzZ3NJPTyHVFFe5_7Q2jbYd1vgMyUM/s1600/zebrasleepoverplants+119.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMb14E0Lcu_iUqcLZ8hrXqAiWmBzQzKz5tlPx1XucYbjS_rb5xDrtVIhPZ9kNOyiRsuGta9a2hXr4WgJTGjvIGyqebCFVxOK0sdD0BQyAvGdadvKzZ3NJPTyHVFFe5_7Q2jbYd1vgMyUM/s320/zebrasleepoverplants+119.JPG" alt="" id="BLOGGER_PHOTO_ID_5610838783443675810" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Bendy princesses firmly believe that hysterical laughter can fix anything, or at least make pain more manageable.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlTa0tB-7wwU4JyPve7uOgBHNiAEVFLqgoEiMGWpsK-Yp695WqXf9Zy043NnL0ts3HR_y9wE4FvqaQJ19-E8gNEAuHjy-lvAyAHKsixyuOb_a2M2cYNlIQUc-CEmqPEBARJGzOTJICSpE/s1600/zebrasleepoverplants+150.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlTa0tB-7wwU4JyPve7uOgBHNiAEVFLqgoEiMGWpsK-Yp695WqXf9Zy043NnL0ts3HR_y9wE4FvqaQJ19-E8gNEAuHjy-lvAyAHKsixyuOb_a2M2cYNlIQUc-CEmqPEBARJGzOTJICSpE/s320/zebrasleepoverplants+150.JPG" alt="" id="BLOGGER_PHOTO_ID_5610770626440917666" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Then it was time to play a game called: Is This Normal?!<br />Princesses Nakki and Chuckles are definitely royalty as their feet were starting to turn a nice shade of purple. Blood pooling is awesome!!</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixtzBmMe0piECCemu4038-eYaaNjdnDdHSWYl-r5xb4xw8Hu7FIlVWBFqwpjMkWrvrLnZOaC3XAYRzMcMbR8Gz_sogZ5mhFSsWTu2x60M8tcWklBBSzSNOb5xTlYiyCmCSCszbPSVHqf8/s1600/zebrasleepoverplants+158.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixtzBmMe0piECCemu4038-eYaaNjdnDdHSWYl-r5xb4xw8Hu7FIlVWBFqwpjMkWrvrLnZOaC3XAYRzMcMbR8Gz_sogZ5mhFSsWTu2x60M8tcWklBBSzSNOb5xTlYiyCmCSCszbPSVHqf8/s320/zebrasleepoverplants+158.JPG" alt="" id="BLOGGER_PHOTO_ID_5610770618591994018" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Some of us lived off of cupcakes the entire time. This princess couldn't get enough of the strawberry icing, and thought it would be even better with bacon.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh1qzrBxR5Nz5zj9ooTsppMT-1-P9sfkmxYfnWjmztnOn1-1xKoA_bUeHNTwuhNLx1cfslkiG8hCqOQaBJyTE3z99TVGRW35te7TyNJCgY6LeihY8A8dcvFrmhaM9J6OAXzpLqgOu9ei0/s1600/zebrasleepoverplants+037.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 180px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh1qzrBxR5Nz5zj9ooTsppMT-1-P9sfkmxYfnWjmztnOn1-1xKoA_bUeHNTwuhNLx1cfslkiG8hCqOQaBJyTE3z99TVGRW35te7TyNJCgY6LeihY8A8dcvFrmhaM9J6OAXzpLqgOu9ei0/s320/zebrasleepoverplants+037.JPG" alt="" id="BLOGGER_PHOTO_ID_5610770612760108482" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">She wanted to fill the cupcake bling with bacon grease so it could be lip-gloss.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrBHII7ShTjTKXBSDTOdhd61D0rwVhYOJD_vwui4XMG28pBnzup48ikE78kj5BUBAJKTJcjmwOa5UBL9NDvU7dPDXrf3tseL4iPB6WduTu1yh9HRAXsAimNcfuSeVQ3u-qgujGEIGCt9s/s1600/zebrasleepoverplants+167.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrBHII7ShTjTKXBSDTOdhd61D0rwVhYOJD_vwui4XMG28pBnzup48ikE78kj5BUBAJKTJcjmwOa5UBL9NDvU7dPDXrf3tseL4iPB6WduTu1yh9HRAXsAimNcfuSeVQ3u-qgujGEIGCt9s/s320/zebrasleepoverplants+167.JPG" alt="" id="BLOGGER_PHOTO_ID_5610770608245109778" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">No longer a princess, but instead the Queen of Bacon!!</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I constantly asked how I manage to stay positive and laugh at pretty much everything, when stuck in a body that is falling apart. Bendy friends are instrumental in keeping each other from going insane and giving up hope. There are always bendy friends to talk to at stupid o'clock in the morning because none of us really sleep. Going to bendy posse events, has got to be one of the best things we can do for ourselves. We don't have to try to pretend everything is sunshine and lollipops,we don't have to shield people from some of the really ugly stuff EDS can do, and we don't have to stand or sit in a chair. Being with bendy friends is the one time where we feel completely understood and are accepted as a whole package without any judgment,comments or criticism of how we're choosing to live. Bendy friends need each other because otherwise, we'd be totally lost and very grumpy. Not to mention being in the hospital a lot more. We essentially rely on each other to get info and advise so we can advocate, when nobody else knows what to do with us.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I think everyone in the Ontario bendy posse would want the same for other bendy's out there. Please go out and start your own bendy posse and get together regularly. Having support like this is priceless. It's like the conferences but smaller, a lot less overwhelming and more fun. Alcohol is also much more affordable, since it doesn't need to be purchased from the posh bar at the hotel. I don't think the posh bar serves Jello-shots either...</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">If this post doesn't make sense right now, it's because dysautonomia wanted in on the party and I'm super brian-foggy.</span><br /><br /><div style="text-align: center;"><span style="font-size:130%;"><span style="font-weight: bold; font-style: italic; color: rgb(255, 255, 153);">"We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual and call it love." <br /><span style="font-size:78%;">(Dr. Seuss)</span></span><br /></span></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi1Zktle2fiwfKAlxYH-a1-SFVmFvdi90NgOp4djf476bfkC7qfsaKNHjc38qb1aHm-RSleFApoMr4p2liMksMomb0Cgve106-E7KKhJZ5YdS_SBNKN8uego8VbamGuoxozoipXSDQDng/s1600/zebrasleepoverplants+153.JPG"><br /></a>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-49371635812194731332011-05-17T10:30:00.000-07:002011-05-17T11:19:39.204-07:00Awesome GP does it again!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMC_je2m8P-BOOOCSR8bj3g26PTjx_knhzbphE02QjjwNOqV3Kcjfo20-vl75Je0QvQb5ZR6wzjVW3sjJDmbu8ohp1X8EKAwHq3htGz3dheW1UaR2VdmXJTnauHTjLR9YXWYa0owq2boU/s1600/Picture0281.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMC_je2m8P-BOOOCSR8bj3g26PTjx_knhzbphE02QjjwNOqV3Kcjfo20-vl75Je0QvQb5ZR6wzjVW3sjJDmbu8ohp1X8EKAwHq3htGz3dheW1UaR2VdmXJTnauHTjLR9YXWYa0owq2boU/s320/Picture0281.jpg" alt="" id="BLOGGER_PHOTO_ID_5607742115080919218" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">I went to see Awesome GP yesterday to see what he could do,so I could get help with this GI stuff ASAP.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I won't bore you with details, but let's just say I've got it good!!!</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Awesome GP didn't like the idea of me be being suck in the hospital getting fluids and things while I waited to get the fundo surgery. So he set up for home-care to come and hook me up. I'm at home with fluids and Zofran while he finds a young, open-minded surgeon who will take on me and my crazy body.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUFVVfJRlzp2Ug9b-0mSq9ZmcwWNgd1_q2B4gZKP4MgquY8kpdpwcQC1HdTC26kIeRBvHO2yVFT0pkVwqpOpZdVC0X1S9PjamXP3a0RzF89eUIqyP3rN3TJ81DGT1JvT3MQCshahiLbTk/s1600/IV%2527s+and+things+008.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUFVVfJRlzp2Ug9b-0mSq9ZmcwWNgd1_q2B4gZKP4MgquY8kpdpwcQC1HdTC26kIeRBvHO2yVFT0pkVwqpOpZdVC0X1S9PjamXP3a0RzF89eUIqyP3rN3TJ81DGT1JvT3MQCshahiLbTk/s320/IV%2527s+and+things+008.JPG" alt="" id="BLOGGER_PHOTO_ID_5607742113638429346" border="0" /></a><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Another pump?! There's no way I'm going to use this gigantic dinosaur. I'm sure it's just as loud and obnoxious as the hospital pumps. I'm kicking it old school and using gravity! Then I can take my fluids anywhere in the house, and even hang the bags from a hammock. The poor delivery man was so confused when I wouldn't take the IV pole either.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPXhRI7BBtTYMWIsqdGq8RqxvE1C36D0qPnaA4rzPBV6qvQWxAZR9FFBgwjDXNkSzxnf8ub-xzU6OOYcAF8LToHTu3AWRsRZ-dq2CSg73108I37nlR4m0qB1QNxbTA-ZtXo4sponQ3kAI/s1600/IV%2527s+and+things+006.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPXhRI7BBtTYMWIsqdGq8RqxvE1C36D0qPnaA4rzPBV6qvQWxAZR9FFBgwjDXNkSzxnf8ub-xzU6OOYcAF8LToHTu3AWRsRZ-dq2CSg73108I37nlR4m0qB1QNxbTA-ZtXo4sponQ3kAI/s320/IV%2527s+and+things+006.JPG" alt="" id="BLOGGER_PHOTO_ID_5607742105124511474" border="0" /></a><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Some needles, tubing, canula's, Zofran and fluids! I'm going to look like such a junkie after this...</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold; color: rgb(51, 51, 51);" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMKrxcwllR1NN_3jgq2a4vmMnDG09Arj2bIK6NuqHdErxlM7o5ok6_RQIpiQDsd4FSbO-V-UrSY8e3oiih_tvGQmD8vLB4JD5348TGfKJ01qqUCXwu797yAH0R5i5hLnii-maOspmJVk/s1600/IV%2527s+and+things+005.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMKrxcwllR1NN_3jgq2a4vmMnDG09Arj2bIK6NuqHdErxlM7o5ok6_RQIpiQDsd4FSbO-V-UrSY8e3oiih_tvGQmD8vLB4JD5348TGfKJ01qqUCXwu797yAH0R5i5hLnii-maOspmJVk/s320/IV%2527s+and+things+005.JPG" alt="" id="BLOGGER_PHOTO_ID_5607742098440604370" border="0" /></a><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I just finished packing up at box of supplies I don't need, and then got another one. Anyone want gauze? I have about 4yrs worth of it.</span><br /><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I got an "I'm proud of you" from my nurse today. I guess they're not used to having patients who are independent and can advocate like it's nobody's business. I didn't have to fight for anything today, after we cleared up the fact that I refuse to use the pump and IV pole, and we're doing this MY way.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">The bendy posse is getting together again this weekend, so there will most definitely be a very entertaining/messed up post with pictures to come.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I also want to thank all my bendy friends for their advise and support. I've decided to scrap the TPN but still push for the fundo surgery. There's no way we'd make it through without each-other. It was so nice to talk with a bendy friend who's also getting fluids & Zofran at home, and kicking it old-school with gravity. It's because we're awesome :)</span>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com2tag:blogger.com,1999:blog-3251345393759638797.post-5014969771571968152011-05-13T21:38:00.000-07:002011-05-14T21:34:50.814-07:00The simple things are really the finer things<span style="font-weight: bold;">Well, I'm still feeling really gross but I'm also finding lots of enjoyment during these really long days. Sounds contradictory doesn't it ?</span><br /><br /><span style="font-weight: bold;">Guess what? It's not. Here's why:</span><br /><br /><span style="font-weight: bold;">I've found that getting sick as given me lots of opportunities to learn to enjoy the simple things in life. Like, bare-bones simple sometimes. I've always been someone who enjoyed those simple things, but only in small quantities. I would get bored, antsy then I'd feel powerless. In hindsight, I know exactly why that would happen. It was because I had to face some really hard things and eventually work through them. When I really started to regress over the last couple of years, I had to stop everything I loved. I was someone who was always on the move, and the faster I was going, the better. I didn't have time to be still and quiet, nor did I have any interest in it. To me it was like torture. As my symptoms got crazier, I eventually had no choice but to learn to be still and quiet.</span><br /><br /><span style="font-weight: bold;">That time was also the peak of the depression fun that we all find ourselves in when we realize that this is it. Life will always be this way. If we were lucky, there might be a few things that we could do again with lots of adaptation and most importantly caution. Our lives would be filled with countless evaluations throughout the day, for us to determine the impact of our every move and the consequences that would follow.</span><br /><br /><span style="font-weight: bold;">With a lot of work and perseverance, I finally learned how to be still and quiet. I distinctly remember the first time I actually chilled out. I was camping with the guys, after what had been a really bad past couple of months. It was a beautiful, quiet afternoon in the middle of no-where and I went to lay on a rock just beside the lake. I made a conscious effort to focus on breathing and relaxing. After about ten minutes I realized that I was chilling out!!! Then I yelled to the guys that were doing their own thing, "Hey guys, I just chilled out!!". I can't say I was relaxed after that, because holy crap...I chilled out. From then on, I knew it was possible and I wanted more.</span><br /><br /><span style="font-weight: bold;">Now a few years later, and with a lot of practice I can be still and quiet almost anytime. For me, habitually taking my mind off of life and EDS for little chunks of time each day has allowed me to retain the little sanity I have left. Maybe I wouldn't say retain, because as life gets crazier I'm more at relaxed and at peace than ever before. So we'll say I'm taking back my sanity and perfecting it. It's also the one thing that helps with pain control when nothing else does. On those days when everything hurts so much that I find myself on the floor, I turn off my brain and focus on breathing. Nothing else. It allows me to get from one moment to the next and to be completely relaxed so I can ride the whole thing out. I could be yelling at the top of my lungs about pain, but for me it's counter-productive. Yelling makes for more muscle tightness, it's loud and makes me,and anyone else around panic. No thanks...</span><br /><br /><span style="font-weight: bold;">Anyway, this whole being quiet thing has given me so many opportunities to experience the world in a different way. After perfecting this skill over the last year of being sick in bed, I am finally putting it into real practice. I can now experience things simply, and there's nothing like it.</span><br /><br /><span style="font-weight: bold;">I've been reading my books for school in a hammock in the sun. I'm surrounded by flowers that smell wonderful, and lots of greenery. I've been laying on the grass, looking up at the sky thinking about nothing, sweet nothing. On windy days I'll go for walks and spread my arms out so I can feel the wind on my whole body. Sometimes after work I'll walk down to the beach and hang out there for a while. I'll play in the sand, wade in the water and soak up the sun. Tonight it started raining and no, I didn't go inside. Instead, I took off my sandals and AFOs' and got to re-experience the feeling of wet leaves and grass under my feet. Then I went back to the hammock and just lay in the rain. When I'm outside doing anything, that's when I truly feel grounded and connected. Most of the time the thoughts of EDS and what it's doing to me, melt away and I get some much needed respite.</span><br /><br /><span style="font-weight: bold;">Since feeling a lot better (not right now, but on the whole), I've been able to participate in life again. I've been able to make plans and keep them for the most part. It doesn't mean that I'm doing anything crazy, but I'm really enjoying the time with my friends doing nothing in particular. Just hanging out, and enjoying each others company. Now that it's been getting warmer, we've been spending more time outside and it's been awesome. Everyone always asks what I've been up to or busy with.Other than paperwork and EDS fun stuff, I just been enjoying life. Most importantly the simple things,that are really the finer things in life, and that's what makes me happy.</span><br /><br /><span style="font-weight: bold;">This week two of our bendy's friends have gone to meet their maker. Zak and Kim won't ever get to enjoy the simple things anymore. They left this earth to soon, and none of us know when it will be our time (whatever you believe in).If you're not already doing it, make it a habit to find the simple and fine things in life, and enjoy them. It might take a lot of practice, but it's totally worth it. If I can weather the storms that life unleashes, so can anyone. You may also develop a bit of an "I don't care" attitude, and that's awesome. Because at the end of the day, does it really matter if we broke a glass, or ran out of peanut-butter or forgot to take out the garbage? Probably not... Tomorrow is a new day, and it's never a day to be wasted.</span><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD00_cwaRTHMfNxnlCf7s4MiLw5ms5fuyyiiuWo8WsVmxbluWNsuvspASIEXZGCUagEtCzHz6wTGomerBuql_ykZuBANXOBeBg9OHp0Yn9Sc5tq2_kcaKrNeBxZU0gCwlG813Y8pf41c0/s1600/everything+good+092.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD00_cwaRTHMfNxnlCf7s4MiLw5ms5fuyyiiuWo8WsVmxbluWNsuvspASIEXZGCUagEtCzHz6wTGomerBuql_ykZuBANXOBeBg9OHp0Yn9Sc5tq2_kcaKrNeBxZU0gCwlG813Y8pf41c0/s320/everything+good+092.JPG" alt="" id="BLOGGER_PHOTO_ID_5606617188615454130" border="0" /></a><span style="font-weight: bold;">I found a backpack that is perfect for the Joey-pump, and so much better than the one that is made for the pump. It's also about $60 cheaper, and looks far more cool. I'm a bit of a MEC whore, they always have what I'm looking for and it lasts forever.<span style="color: rgb(255, 255, 255);"> </span></span><a style="font-weight: bold; color: rgb(255, 255, 255);" href="http://www.mec.ca/Products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524442635436&FOLDER%3C%3Efolder_id=2534374302889522">http://www.mec.ca/Products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524442635436&FOLDER%3C%3Efolder_id=2534374302889522</a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqZmY3z6706MU5chZvZEfN7kBsEOOxNmbGZ1P_g-0mmCWoghz9cqTUm46au-GDwjgH0mIeDqR5Bn0sEdlZt8dTL4jhyphenhyphen-zcEIltdxbS0x163DrmgEbYSQyNQrRuA2PxxT45ZL_4Q_qNxBM/s1600/everything+good+086.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqZmY3z6706MU5chZvZEfN7kBsEOOxNmbGZ1P_g-0mmCWoghz9cqTUm46au-GDwjgH0mIeDqR5Bn0sEdlZt8dTL4jhyphenhyphen-zcEIltdxbS0x163DrmgEbYSQyNQrRuA2PxxT45ZL_4Q_qNxBM/s320/everything+good+086.JPG" alt="" id="BLOGGER_PHOTO_ID_5606617182102553090" border="0" /></a><br /><span style="font-weight: bold;">And..............I found some sandals to cover my AFO's. From May until mid-September the man shoes are gone. It only took 3 attempts to find these and I love the fact that they're orange. </span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnj3GjxN4ikzHw6oa7tBrCo3kAHMLMEeBDdULkQ_sbUpqgyMzdx8IYVc6r0IXUp95mCcr8CzQuUAuGY1tCIKJ3kmRi6H_zTCmvLYq_-tEmK58WVsH_LOWItP_VcxsdnP60Ux-jy45qSlc/s1600/222894_1844824654294_1650960014_1812626_1040691_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnj3GjxN4ikzHw6oa7tBrCo3kAHMLMEeBDdULkQ_sbUpqgyMzdx8IYVc6r0IXUp95mCcr8CzQuUAuGY1tCIKJ3kmRi6H_zTCmvLYq_-tEmK58WVsH_LOWItP_VcxsdnP60Ux-jy45qSlc/s320/222894_1844824654294_1650960014_1812626_1040691_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5606617175741499522" border="0" /></a><br /><span style="font-weight: bold;">Some of our bendy posse got together. It was a beautiful sunny day, where we spent it mostly outside. First we stopped for lunch where we started with some drinks. Jerome had vodka shot, and an audience. I guess people aren't used to seeing a girl do shots through a feeding tube. They wanted me to do it again, because they thought the whole thing was hilarious, so I happily complied. Insta-drunk again, don't mind if I do. </span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-KVIaHD5_20mqvncBcbuX7RC2VV7E8VV8dx2KlGg5RsYgqMGB42HiLiUpfvZebPhcL76wI_VVgTJRUhuNhtyZSrx4VVTs0CgRMIkeLgkaRpeU6_uamp8agpQMrn77aIo_EjJX_d1SFQ/s1600/everything+good+004.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-KVIaHD5_20mqvncBcbuX7RC2VV7E8VV8dx2KlGg5RsYgqMGB42HiLiUpfvZebPhcL76wI_VVgTJRUhuNhtyZSrx4VVTs0CgRMIkeLgkaRpeU6_uamp8agpQMrn77aIo_EjJX_d1SFQ/s320/everything+good+004.JPG" alt="" id="BLOGGER_PHOTO_ID_5606602710533080610" border="0" /></a><span style="font-weight: bold;">Then we stopped for some desserts in the sun. </span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2kA3J8ZZYzYR300xbJRbRA9yZUNthVEN-V8R_0au8P06Bfg6ZW1WekAnaqmsw7pOM7MOBSTfUy_3mpBudLPnsf-S-vYzJWbuOMbbY4FXULsplRQN1tk1M29ovYXxNiZX6JEAOrnymRlc/s1600/everything+good+003.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2kA3J8ZZYzYR300xbJRbRA9yZUNthVEN-V8R_0au8P06Bfg6ZW1WekAnaqmsw7pOM7MOBSTfUy_3mpBudLPnsf-S-vYzJWbuOMbbY4FXULsplRQN1tk1M29ovYXxNiZX6JEAOrnymRlc/s320/everything+good+003.JPG" alt="" id="BLOGGER_PHOTO_ID_5606602715406652466" border="0" /></a><br /><span style="font-weight: bold;">Later we went on our way for more food. We stuffed ourselves silly and had a fantastic time.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx50FeXicuByxNeoQ-7HnKgycYvK_1TOxTAwaBkKaVANo1LaM23uSw01NOl-fflDGuhWOLAFCLNnt_kvLSvm7GSpyw2XHxHIqhVqlfxwXBbXWYxD2TQxdbxsq5FJJAvVrPQrvW913vRkM/s1600/nothingspecial+007.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx50FeXicuByxNeoQ-7HnKgycYvK_1TOxTAwaBkKaVANo1LaM23uSw01NOl-fflDGuhWOLAFCLNnt_kvLSvm7GSpyw2XHxHIqhVqlfxwXBbXWYxD2TQxdbxsq5FJJAvVrPQrvW913vRkM/s320/nothingspecial+007.JPG" alt="" id="BLOGGER_PHOTO_ID_5606617165028141714" border="0" /></a><span style="font-weight: bold;">This is where I'm spending a lot of my time. I don't know how I ever lived without a hammock. Jerome was being fed with gravity, I just clipped the fluids bag on the top of the hammock and kicked it old school. Nothing better than fluids, brain-food and being outside. Yes, PenAgain makes hi-lighters. </span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqt4iamBzTdGoRABFP_X9YtOQQ2v6WjjCZrITUUDSU5_gt4VuKkxct-gcRem1ppA5lktBDb3LkzFdr_gQz2iaQQODQIIMxIgOoGTagDzYs3cWW-FX5tibRdKkKfocMzxWCk3pi-p5F2dw/s1600/everything+good+082.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqt4iamBzTdGoRABFP_X9YtOQQ2v6WjjCZrITUUDSU5_gt4VuKkxct-gcRem1ppA5lktBDb3LkzFdr_gQz2iaQQODQIIMxIgOoGTagDzYs3cWW-FX5tibRdKkKfocMzxWCk3pi-p5F2dw/s320/everything+good+082.JPG" alt="" id="BLOGGER_PHOTO_ID_5606602716009215266" border="0" /></a><span style="font-weight: bold;">This is what I see when I look up, no boring ceiling to stare at.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3G5Vc366vQZMFGbgqOqHq58_XrxPb84qikGn2gwXEp0-YAACqVVIzeryTO8POa7x5L5u5Di3ivmSxi9LQFipNI0Kbo8iMxYCz-jmFZKtzIRbrrwB-eTU2GN9V8ByBLHpsi810ZilnOM/s1600/beachmay2011+015.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3G5Vc366vQZMFGbgqOqHq58_XrxPb84qikGn2gwXEp0-YAACqVVIzeryTO8POa7x5L5u5Di3ivmSxi9LQFipNI0Kbo8iMxYCz-jmFZKtzIRbrrwB-eTU2GN9V8ByBLHpsi810ZilnOM/s320/beachmay2011+015.JPG" alt="" id="BLOGGER_PHOTO_ID_5606602698735348658" border="0" /></a><span style="font-weight: bold;">Nothing better than unwinding at the beach after work.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gmWDK5VzlYXVN7qH2ATFOOO7hCwxMSoKJxMDEdaYcNg0ECxbLVzn2GVdBCV8tXbV1o2821FDY8fz1fG6bBgGb19dQ2BFyK-hf8ipLW63OoCc64mb99IlGvpcmb0yBouRpUcshF8D2bI/s1600/beachmay2011+013.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gmWDK5VzlYXVN7qH2ATFOOO7hCwxMSoKJxMDEdaYcNg0ECxbLVzn2GVdBCV8tXbV1o2821FDY8fz1fG6bBgGb19dQ2BFyK-hf8ipLW63OoCc64mb99IlGvpcmb0yBouRpUcshF8D2bI/s320/beachmay2011+013.JPG" alt="" id="BLOGGER_PHOTO_ID_5606602696926937122" border="0" /></a><span style="font-weight: bold;">Happiest feet on the face of the planet.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggg4KBJLEuinViOYb2JZ7j4QEcu2JJf4ecSfAKdpzpPiPU4ZYtEPamouQZn4ZXZfOhVAVUerFtVT2j6HfFGhOuCYZbvqj8Riyz8bNXhigBh0fsXxLRm16UhuakLOKNOHDD8qpGpCfBmC8/s1600/nothingspecial+020.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggg4KBJLEuinViOYb2JZ7j4QEcu2JJf4ecSfAKdpzpPiPU4ZYtEPamouQZn4ZXZfOhVAVUerFtVT2j6HfFGhOuCYZbvqj8Riyz8bNXhigBh0fsXxLRm16UhuakLOKNOHDD8qpGpCfBmC8/s320/nothingspecial+020.JPG" alt="" id="BLOGGER_PHOTO_ID_5606617170826213282" border="0" /></a><br /><span style="font-weight: bold;">Last year's birthday was spent in bed with a subluxed neck and the beginning of life with dysautonomia. It was also supposed to be my last day at the job I loved thanks to EDS. I missed both, but luckily this year I got a re-do! A b-day celebration with some of my work friends at an Ethiopian restaurant. I'm a lucky girl.</span><br /><br /><div style="text-align: center;"><span style="font-size:130%;"><span style="color: rgb(255, 255, 153); font-weight: bold;">"Celebrate we will, because life is short but sweet for certain"</span></span><br /><span style="color: rgb(255, 255, 204);"><span style="font-size:78%;">(Dave Matthews)</span></span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com1tag:blogger.com,1999:blog-3251345393759638797.post-2799467738173913182011-05-12T12:53:00.000-07:002011-05-13T13:24:18.977-07:00Possible GI relapse fun stuff<span style="font-weight: bold; color: rgb(51, 51, 51);">Let me start by saying that I've managed to avoid an ER for 4months and 1 day!!! Considering I used to be there all the time, this is awesome.</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);"> </span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">What's not so awesome is my silly GI system. </span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I've been refluxing like it's nobody's business for the last week. I haven't been getting hungry and am back to easily going 24hrs without food. If I do eat, I feel nauseous and gross with non-stop reflux. The reflux also happens on an empty stomach, it doesn't seem to matter what I'm putting in my body. The same can be said for putting anything through Jerome including my fluids concoction that I NEED to be on. This is exactly what happened before, except I wasn't using the Joey-pump. None of the natural stuff seems to be working either :(</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">The dysautonomia has been a little strange for the past two weeks as well. I've had all the symptoms going on, but thankfully not all at once. Last week it mostly low BP, dizziness, brain-fog and tachycardia. This week it's mostly sleep and GI stuff. </span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Thanks to EDS this makes things very complicated. Here we go....</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I need my fluids concoction to essentially survive, but I reflux it which means that I sometimes choke on whatever is coming up. That's not cool when you have dysphagia and a history of aspiration pneumonias (5 of 'em). It also means whatever I'm putting through J isn't being absorbed properly which messes up the dysautonomia. It's also not like I can be on the fluids at a slow rate for even longer during the day,because I blow through it so fast and that would make me even more sick. We learned that at Chateau Sinai when I was getting worse because they were brilliant enough to not listen, and thought 100mls/hr of fluids was enough to sustain me when I need 300mls/hr. On day 4 they finally listened, and waddaya know...things got better. </span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I definitely know this isn't hormone related unless I'm producing relaxin when I shouldn't be. Othersiwse, I'm out of theories. We do know that the sphincters that keep everything down are shot, and no medication has ever worked. </span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);"> So here's what I'm thinking...</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Ideally, I'd be admitted again and thrown on IV fluids and TPN</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);"> </span><a style="font-weight: bold; color: rgb(255, 255, 255);" saprocessedanchor="true" href="http://en.wikipedia.org/wiki/Total_parenteral_nutrition" target="_blank">http://en.wikipedia.org/wiki/Total_parenteral_nutrition</a><span style="font-weight: bold; color: rgb(51, 51, 51);"><span style="color: rgb(255, 255, 255);">.</span> Then I'd be hydrated and would avoid wasting away while we give my GI system a rest and check it out. Let's not say it's ideal, but rather practical. Then I'm also thinking of fighting to get a Nissen Fundoplication</span><br /><span style="font-weight: bold; color: rgb(255, 255, 255);"> </span><a style="font-weight: bold; color: rgb(255, 255, 255);" saprocessedanchor="true" href="http://en.wikipedia.org/wiki/Nissen_fundoplication" target="_blank">http://en.wikipedia.org/wiki/Nissen_fundoplication. </a><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Having to go on TPN while inpatient is common among the bendy community. At least I'd be normal that way. </span><br /><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">We've done everything else including a J-tube to avoid the reflux...Getting the fundoplication would mean I won't reflux and aspirate on whatever is coming up, decrease the risks of esophageal cancer and food will stay down. I also wouldn't be able to vomit. Then, I could get just a plain g-tube put in which would make life a lot easier because I won't need day surgery every time it needs to be replaced and I could do it myself at home. The whole not being able to vomit isn't too bad, because I'd have the tube that would act as an exit. Yep, it's possible to barf through a tube. The other benefits include less exposure to radiation because it's less time in interventional radiology which has to be done anytime they do anything to a J-tube. I'm sure my insides are glowing from all those scans and fleuroscophies. I also will be able to avoid sedation a lot more. Don't get me wrong, I love the drugs but they're just not good. </span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">The biggest bonus if I get the whole thing done with a g-tube, is that I can puree my food and put it in. I'm getting food allergy/intolerance testing done in June, so with whatever happens with that, my diet can be customized which makes a healthier me. </span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">This is something I've brought up before, and they said no. However, we've pretty much run out of options and I'd like to go back to not feeling like complete ass. It was nice.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Waddaya think? Any feedback would be appreciated. Cause' I don't know what else to do.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Otherwise, my body seems to be co-operating and staying together relatively well.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">p.s. Food is over-rated.</span>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-12120894449173786822011-05-06T21:35:00.000-07:002011-05-06T21:37:52.322-07:00When OT's do the impossible, the good kind.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBAVgOpCUu26MkHAgE9R94uqmnRlLDCHQl6QkIxKMOEgVOK44MgN5cw3jo0SOzyCXnVgySvdhnPnMC4sKCYJCC1444jIbrOQ4I5YZ4PxL5YjoObXqaTHQ05Ex10WBmtEBhfuX-tEhaRc/s1600/blistersandbraces+009.JPG"><br /></a><span style="font-weight: bold;">In between the gong-show that has been life with EDS, there have been some pretty incredible victories of sorts.</span><br /><br /><span style="font-weight: bold;">After making all the adaptive goodness for my hands, my OT wanted to know what else we could come up with. The one thing that is almost impossible for an EDSer to get is a neck-brace that fits properly, and doesn't make for more TMJ issues. So, we went for it.</span><br /><br /><span style="font-weight: bold;">I realize that I walk the line of being out of mostly everyone's scope of practice. I'm their first patient with EDS, and when you present someone with a disorder that is complicated and wildly unpredictable it's a huge challenge. Instead of us who were diagnosed and have had time to research and experience it, our doctors, specialists and everyone else gets the EDS bomb-shell dropped on their laps. Aren't they lucky?</span><br /><br /><span style="font-weight: bold;">We had to take a good look at the how's and why's of using a brace instead of surgery right now, and all of the factors that would need to be taken into consideration.</span><br /><br /><span style="font-weight: bold;">After a few attempts and many adjustments we figured it out. We still have a little bit of tweaking to do, but my new neck is incredible. It wasn't much help that I haven't been feeling the greatest with the dysautonomia, so I had some major brain-fog and a killer headache. I've been pretty hypo-sensitive with some kinds of pain lately, which has resulted in a lack of hunger and some burns. I hadn't eaten in about 20 hours, which only contributed to the problem. Luckily, with my fluids concoction the blood-pressure drops,tachycardia and obviously hydration have been okay. My ability to give feedback and carry a fluid conversation without going off into la-la land was a bit hampered. It's better than the times when I can't even finish a thought.</span><br /><br /><span style="font-weight: bold;">If it weren't for the brilliance of the OT's, a neck brace that fit ME wouldn't have been possible. The fact that my head can be supported without some major TMJ pain is incredible. EDSer's have to choose if we want to keep a killer headache/migraine or put up with TMJ pain/headache. Either way, there's still pain. Going without a brace and laying in bed is quite often what we end up doing. Today,we found a way around all of that. Today, my quality of life improved and I have one less big problem to worry about. I can use that energy towards something else that will push me further in the direction I want to go, so I can contribute to the world.</span><br /><br /><span style="font-weight: bold;">I think since it's such a huge piece of adaptive goodness, it needs some kind of a name. I don't want it to be totally off the wall (as if Jerome isn't...) but something that's easy to remember. Any suggestions are welcomed.</span><br /><br /><span style="font-weight: bold;">Without further adieu, here is my most brilliant piece of adaptive goodness that is currently nameless. Don't worry I'll also be finding a way to bling it up too!</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC8rrgjyOHUw4aBzji_bW7dX3HGv4-by9WD_cMDpC4lx2h3jLZZaXs2wcQPf5xDsWe1funuD31awNfIP_ePkQSVfg44QRXWax8DzIJibV8B1ajFegH8p3-iqb_bMsh5R7PtsvASfGSwdg/s1600/blistersandbraces+005.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC8rrgjyOHUw4aBzji_bW7dX3HGv4-by9WD_cMDpC4lx2h3jLZZaXs2wcQPf5xDsWe1funuD31awNfIP_ePkQSVfg44QRXWax8DzIJibV8B1ajFegH8p3-iqb_bMsh5R7PtsvASfGSwdg/s320/blistersandbraces+005.JPG" alt="" id="BLOGGER_PHOTO_ID_5603818622796398226" border="0" /></a><span style="font-weight: bold;">It doesn't mess with my jaw, supports my head and neck, and is COMFORTABLE. I can also eat with it on.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBAVgOpCUu26MkHAgE9R94uqmnRlLDCHQl6QkIxKMOEgVOK44MgN5cw3jo0SOzyCXnVgySvdhnPnMC4sKCYJCC1444jIbrOQ4I5YZ4PxL5YjoObXqaTHQ05Ex10WBmtEBhfuX-tEhaRc/s1600/blistersandbraces+009.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBAVgOpCUu26MkHAgE9R94uqmnRlLDCHQl6QkIxKMOEgVOK44MgN5cw3jo0SOzyCXnVgySvdhnPnMC4sKCYJCC1444jIbrOQ4I5YZ4PxL5YjoObXqaTHQ05Ex10WBmtEBhfuX-tEhaRc/s320/blistersandbraces+009.JPG" alt="" id="BLOGGER_PHOTO_ID_5603818632524262754" border="0" /></a><span style="font-weight: bold;">I will take arm-pit rash any-day over more killer headache/TMJ pain.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNPTOW5056HQCMZOggrC_tB8XIlrlS6qRhCdTAxNOcMrnHCZn96ZZf7NSxLYAKe7ENpTMJw8F72DjIqqfIU8LfKWLFhKQ_fM1HcfxGbDcZEQsx5dUTm0C3SblHsnSYxpK4CvlplJThQM0/s1600/blistersandbraces+006.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNPTOW5056HQCMZOggrC_tB8XIlrlS6qRhCdTAxNOcMrnHCZn96ZZf7NSxLYAKe7ENpTMJw8F72DjIqqfIU8LfKWLFhKQ_fM1HcfxGbDcZEQsx5dUTm0C3SblHsnSYxpK4CvlplJThQM0/s320/blistersandbraces+006.JPG" alt="" id="BLOGGER_PHOTO_ID_5603818629868852770" border="0" /></a><br /><span style="font-weight: bold;">Yep, there's a little pillow at the back. It was the only way we could get it to fit without restricting my airway and still be comfortable. The little pillow is fastened on with Velcro and is just batting with a sleeve. The other pro is that I can take out the pillow and throw an ice-pack in there when needed.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bknq3RZJNafZCItpJXBO-gXOVzCTs8z2Fj6-XgPKdWujjQL3b1AVGoMUhOnbXLnJXLqafMLV4olgqz7nroYhPjqnL9g_Xjmk8pDdAckzr8XWZ79j39ClLEMntExreM2xDrZx0TXPTjs/s1600/sugarspiceeverythingnice+and+burns+161.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bknq3RZJNafZCItpJXBO-gXOVzCTs8z2Fj6-XgPKdWujjQL3b1AVGoMUhOnbXLnJXLqafMLV4olgqz7nroYhPjqnL9g_Xjmk8pDdAckzr8XWZ79j39ClLEMntExreM2xDrZx0TXPTjs/s320/sugarspiceeverythingnice+and+burns+161.JPG" alt="" id="BLOGGER_PHOTO_ID_5603813823246595666" border="0" /></a><br /><span style="font-weight: bold;">This is what happens when it's a beautiful sunny day, and studying isn't all that exciting.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy3nW13xAiQDI7oAO63cCIASt0lrXIrW15wEk-z7WoTHVbMpW2ipC4-0BhyjGReAy5si5IRFTzM9xupYQtXV6d6u7rKcmXP1UAVSznUExMzNQkPXBxM1-FqzyClaYdj31-BKg-9e06oz4/s1600/sugarspiceeverythingnice+and+burns+122.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy3nW13xAiQDI7oAO63cCIASt0lrXIrW15wEk-z7WoTHVbMpW2ipC4-0BhyjGReAy5si5IRFTzM9xupYQtXV6d6u7rKcmXP1UAVSznUExMzNQkPXBxM1-FqzyClaYdj31-BKg-9e06oz4/s320/sugarspiceeverythingnice+and+burns+122.JPG" alt="" id="BLOGGER_PHOTO_ID_5603813813585492562" border="0" /></a><span style="font-weight: bold;">Sunshine and flowers make any day better. </span><br /><br /><br /><span style="font-weight: bold;">My poor OT is probably going to be harassed from bendy's looking for some adaptive head/neck goodness. There will be line-ups outside her door. That's what happens when you do the impossible. </span><br /><br /><div style="text-align: center;"><span style="color: rgb(255, 255, 153);font-size:130%;" ><span style="font-weight: bold; font-style: italic;">When the world says "Give up", hope whispers "Try it one more time".</span></span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com1tag:blogger.com,1999:blog-3251345393759638797.post-32374052785574916652011-05-03T21:52:00.000-07:002011-05-04T11:43:30.835-07:00The gong show that is EDS, and the exhaustion that comes with it<span style="font-weight: bold;">So life has been all about survival, with some fun thrown into the mix. As I'm only starting to process my last year, there have been some really hard pills to swallow. I have so many things I want to write about, but can't ever seem to get started. I was talking about this with one of my best friends who also happens to be a bendy. He got me started with a sentence, and I had to go from there. It went like this: I was thinking while I washed my face that... I will never get tired of the smell of my aloe cleanser, but I do get tired of the gong-show that is EDS.</span><br /><br /><span style="font-weight: bold;">This time last year, is when I got sick with Dysautonomia. Forget all the other fun that comes with EDS, from that day on my old life as I knew it was over. Last year, I subluxed my neck for the 2nd time and spent my birthday in bed. Funny enough, I've spent other birthdays in bed too. That day also happened to be my last day at one of my jobs that I had been working at forever. It was the job that I loved, and couldn't get enough of. Giving that up was really difficult. As the months went on and I got increasingly sick, I had to give up more. My time doing the things I loved, that were still left on the "Can do" list, was exchanged for time in bed, at appointments or in the hospital. Along with not being able to do the the things I loved anymore, I lost some of the ability to do things that so many of us take for granted, like eating and drinking safely. Don't even get me started on the implications that it had on my social life, I lost a lot of friends.</span><br /><br /><span style="font-weight: bold;">In the last year, we have also got it diagnosed and stabilized. I say "we" because I've got an incredible team of people who have worked really hard to keep me moving forward. I have had some amazing friends who have stuck it out with me, and I don't know where I'd be without them. They understand that being chronically sick can take it's toll on someone. Yet unconditionally, they've had my back. </span><span style="font-weight: bold;">With that, came the biggest slice of humble pie I have ever gotten. I've gone from someone who was completely independent and "had it all", to someone who has "lost it all" and become dependent on everyone else. Having it all, and losing it all are subjective terms. After losing everything, and wallowing in my nothingness, I slowly started to realize that I really did have it all. I had shelter, food, friends,family, health-care and something I believed in.</span><br /><br /><span style="font-weight: bold;">I'm not saying this shit is easy, because it's not. Everyday is a battle. I fight hard to keep my symptoms under control, and to keep my body together. I'm constantly fighting to get funding, I fight to get my reading, studying and paper-writing done for school. And, let's not forget fighting with doctors and health-care providers. A lot of the time, all that fighting results in defeat. Everyday I feel like ass, with varying degrees. Some days I can't keep myself from laying on the floor puking from pain or Dysautonomia. Funding gets turned down for just about everything from a feeding pump to keep me alive, to schooling and housing. I have to spend an insane amount of time and energy advocating for myself so I can get the appropriate health-care that I need. When your diagnoses aren't cookie-cutter and are out of pretty much everyone's scope of practice, it's especially difficult to get someone to listen to you. This has been my gong-show for the past couple of weeks, pure insanity.</span><br /><br /><span style="font-weight: bold;">I'm exhausted. There's a huge part of me that doesn't want to fight anymore, I want a break. A big, fat, long, blissful break. But I can't take a break, and it's not a choice. I have to keep pushing through this crap, so I can do something other than survive. There is so much that I want to do and can still do, but I've got to fight for it. Oh, and I can't ever stop because it will be like this everyday forever. I know it's completely unrealistic to wish for even a day where I don't have to fight, but wouldn't it be nice? I'd also love for all the people who think living with EDS and Dysautonomia "isn't that bad" ,"not that hard" or "isn't painful" to spend 24 hours in this body. Today, I mostly wish that I'd get taken seriously even if I am a patient. Because I know my shit, and messing with me will be trouble, but right now I'm drained. I've also got about a 12inch stack of EDS related paperwork that needs to be done, hahaha being disabled is a blast sometimes!!</span><br /><br /><span style="font-weight: bold;">I'm signing off with something one of my bendy friends said last week, I thought it was brilliant. Thanks for reading my rant, it was so nice to get it off my chest.</span><br /><br /><div style="text-align: center; color: rgb(255, 255, 153);"><span style="font-size:180%;"><span style="font-style: italic; font-weight: bold;">"It's amazing how dramatic our lives are, considering we rarely leave the house"</span><br /></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com2tag:blogger.com,1999:blog-3251345393759638797.post-30370475864798345092011-04-17T15:09:00.000-07:002011-04-19T07:29:13.522-07:00No medications, really?! A product review, spreadin' the word.<span style="font-weight: bold;">I know I belong to a handful of people who use natural and Chinese medicine to deal with EDS and dysautonomia. That's right, no pharmaceuticals for this girl. I'm very thankful to have some really incredible people involved in my care that make it possible. Also, that I live in a place where I have easy access to it all. I'm someone who likes to kick it old school, and rely on what the earth has provided. </span><br /><br /><span style="font-weight: bold;">Please keep in mind I'm not a doctor, and will never pretend to be one. I'm primarily under the care of a Naturopath, acupuncturists, a chiropractor, and an Awesome GP. I have about 15 other doctors and specialists, but I don't really bother with them to much. The products in this post were recommended for ME, but if something peaks your interest, it shouldn't stop you from looking into it. Who knows, it may be something that really helps, and you don't know until you try.</span><br /><br /><span style="font-weight: bold;">I'm going to cover the things I use day to day, or when something crazy pops up. Which,we're all very familiar with. Let's get this party started............</span><br /><br /><div style="text-align: center; font-weight: bold;"><span style="font-size:130%;"><span>Skin</span><br /></span><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLvkFQ-YpIOqzDX4x9a46WxfsT5dg2tbd0bxKWemtCBjyP2yL771WKmAGEqLeZYB64ToPmmWV3K0C6Gcph2Jkur94-7aPSzKlfEeAU-IXpq2fC290QknqJmC2wK4R7jE9MmUKV4Jdoij0/s1600/juicetart+068.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLvkFQ-YpIOqzDX4x9a46WxfsT5dg2tbd0bxKWemtCBjyP2yL771WKmAGEqLeZYB64ToPmmWV3K0C6Gcph2Jkur94-7aPSzKlfEeAU-IXpq2fC290QknqJmC2wK4R7jE9MmUKV4Jdoij0/s320/juicetart+068.JPG" alt="" id="BLOGGER_PHOTO_ID_5594830679353195570" border="0" /></a><span style="font-weight: bold;">This is Calendula in a creme form. It works well on friction rashes (I sometimes get them from the seams of my clothes and my AFO's) and for heat rash. I tried the creme for tape rash, but it stung. I think it's because tape is my arch-nemesis, or maybe it's just the nature of the rash.</span><a style="font-weight: bold;" href="http://www.martinandpleasance.com/_webapp_67986/Calendula_Herbal_Cream"> <span style="color: rgb(255, 255, 255);">http://www.martinandpleasance.com/_webapp_67986/Calendula_Herbal_Cream</span></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpUeu5GZM7N4ukxDAEWkmoxiU_pL1g60tvD6ElmfTInJe2cHG0qzOE54JnyTJfHb9zn-x6VsVxR7MenoWraHnD6fuSwluG8Ky1ceMQo2mUV6A5QQnzT3x7LlX_7DQPO8jA0WX4H8ICAY/s1600/juicetart+063.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHpUeu5GZM7N4ukxDAEWkmoxiU_pL1g60tvD6ElmfTInJe2cHG0qzOE54JnyTJfHb9zn-x6VsVxR7MenoWraHnD6fuSwluG8Ky1ceMQo2mUV6A5QQnzT3x7LlX_7DQPO8jA0WX4H8ICAY/s320/juicetart+063.JPG" alt="" id="BLOGGER_PHOTO_ID_5594830678258113026" border="0" /></a><span style="font-weight: bold;">Plantain salve is good for tape rash and it can go in wounds. It's also really good for getting off the adhesive that likes to linger on your skin for days. So much better than using alcohol and it's good for your skin. </span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ2RKF2B27dtMSLw3UvNxxEcl4M4vn3y3x9S1JYR8xgX2eIpkwdK7-SGOFAseDnzmUK6u9oq_t0IScvfngCgvt8MEmgOVCs2usECoqrDSnzjyDuEW95MY-ohs482kZgqn8f2U_1c0pQyQ/s1600/juicetart+067.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ2RKF2B27dtMSLw3UvNxxEcl4M4vn3y3x9S1JYR8xgX2eIpkwdK7-SGOFAseDnzmUK6u9oq_t0IScvfngCgvt8MEmgOVCs2usECoqrDSnzjyDuEW95MY-ohs482kZgqn8f2U_1c0pQyQ/s320/juicetart+067.JPG" alt="" id="BLOGGER_PHOTO_ID_5594830672500721170" border="0" /></a><span style="font-weight: bold;">And then I found Calendula in a salve too. It helps with wound healing and has been fantastic. I use it on really bad tape-rash and on Jerome.<span style="color: rgb(255, 255, 255);"> </span></span><a style="font-weight: bold; color: rgb(255, 255, 255);" href="http://www.clefdeschamps.net/en/products/liquid-extracts/salves/83-onguent-calendula">http://www.clefdeschamps.net/en/products/liquid-extracts/salves/83-onguent-calendula</a><br /><br /><br /><div style="text-align: center; font-weight: bold;"><span style="font-size:130%;">PAIN<br /></span><br /><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7YbRZAQAva6aQby0r3xlS8_1i3lXGNewqE3_cEuNxJGIf6qtrVLw26u1chlxxz-ssY9Gk47SRGXHpI_FlnZBpA4AEmhZOhYrw6yGbX-s24RPHZSV4QzlNBFoe7clEIZyjuqvweb-zQ0/s1600/juicetart+059.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7YbRZAQAva6aQby0r3xlS8_1i3lXGNewqE3_cEuNxJGIf6qtrVLw26u1chlxxz-ssY9Gk47SRGXHpI_FlnZBpA4AEmhZOhYrw6yGbX-s24RPHZSV4QzlNBFoe7clEIZyjuqvweb-zQ0/s320/juicetart+059.JPG" alt="" id="BLOGGER_PHOTO_ID_5594833843791258274" border="0" /></a>This stuff is awesome. It's called Zheng Gu Shui, and is used for pain control. You massage it into sore, tight muscles for relief and cooling effect. The smell is kind of potent (it will clear your sinuses) and it can be messy because it's a thin liquid. I use it when big muscle groups are all acting up at once.<br /><br /></div><br /><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwOTu-VATnxCBzxAKpOtb6gbsmcPRRpUlOEpQd_Yx1N0hrHPPF1-zvfTuiu1A31el4BF-zJKby9WNLf-rP-LFdUlllRjjUYXBzdkW-7YX9s66FibFJLAcOgLGNB9uQEv0WtXwJIRKMOvA/s1600/juicetart+058.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwOTu-VATnxCBzxAKpOtb6gbsmcPRRpUlOEpQd_Yx1N0hrHPPF1-zvfTuiu1A31el4BF-zJKby9WNLf-rP-LFdUlllRjjUYXBzdkW-7YX9s66FibFJLAcOgLGNB9uQEv0WtXwJIRKMOvA/s320/juicetart+058.JPG" alt="" id="BLOGGER_PHOTO_ID_5594833835366456530" border="0" /></a>Analgesic plasters are like my boyfriend !! They come in a big roll and you cut the pieces yourself. I use this stuff all the time. It's really good for any kind of muscle pain and has given me some of the best relief ever. I'll usually stick it on before I go to bed and leave it on all night. The only down fall is they're also kind of stinky or aromatic, (a mix of menthol and herbs) and can leave some pretty nice rashes from the adhesive. It's totally worth it though, I don't know how I lived without it.<br /><br /><div style="text-align: center;"><span style="font-size:130%;"><span><br />Bleeding<br /><br /></span></span></div></div><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxVpef8KND7ydZTrB3nosXpTds1FEpGpx_RxgSmCQC8SLjf_EuEHk1sw252vqW9ePj1tn64BBuaSTEuE_xiALMkJJOtYYJdtoMgWzpGL6CAf3s0yQui74q662UlCkznFL41ojYR8QCE3E/s1600/juicetart+057.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxVpef8KND7ydZTrB3nosXpTds1FEpGpx_RxgSmCQC8SLjf_EuEHk1sw252vqW9ePj1tn64BBuaSTEuE_xiALMkJJOtYYJdtoMgWzpGL6CAf3s0yQui74q662UlCkznFL41ojYR8QCE3E/s320/juicetart+057.JPG" alt="" id="BLOGGER_PHOTO_ID_5594833828103603842" border="0" /></a>I don't know about everyone else, but I can be a bleeder. Yunnan Baiyao (Paiyao) is bad-ass! It was used by warriors centuries ago on the battle fields. It helps with bleeding, soft-tissue contusions and pain. I use it when I've had J-tube issues/recovering from surgery. If you're like me, and can't swallow pills or caplets this stuff doesn't taste nearly as bad as any pharmaceutical. It sounds weird, but it tastes like a bunch of herbs (which it is) and like feeling better. The contraindications include: No beans,fish, cool and spicy foods. I'd deal with that any day over the crazy pharmaceutical side-effects.<br /></div></div><br /><div style="text-align: center;"><span style="font-weight: bold;font-size:130%;" >Immune<br /><br /></span><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioO7dVeuH-dMGweDJXawpzFnr_HcWLxb71ytSrF_cxOZh6WOypOcnVx5u1708Qgi6emmQnDhkCK14geyxfjQ12ykyM111YdaEeqLiOLeJS4NOGGRaJQBtS0w9ZEfMxKqV_06K_3SyInjE/s1600/juicetart+055.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioO7dVeuH-dMGweDJXawpzFnr_HcWLxb71ytSrF_cxOZh6WOypOcnVx5u1708Qgi6emmQnDhkCK14geyxfjQ12ykyM111YdaEeqLiOLeJS4NOGGRaJQBtS0w9ZEfMxKqV_06K_3SyInjE/s320/juicetart+055.JPG" alt="" id="BLOGGER_PHOTO_ID_5594830690403549314" border="0" /></a><span style="font-weight: bold;">St.Francis' Deep Immune, I put it in my fluids concoction everyday. It's an immune enhancer, antiviral and energy tonic. I use it to help prevent infection, especially with Jerome and to keep my immune system strong, as getting sick with anything will make dysautonomia go crazy. <a style="color: rgb(255, 255, 255);" href="http://www.stfrancisherbfarm.com/product.aspx?ID=2&Title=Immune">http://www.stfrancisherbfarm.com/product.aspx?ID=2&Title=Immune</a></span><br /><br /><br /><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw5HQha77bzE9qOd3ImQNR84Aqkivvl6efC_a3ZueOf6hQKebkX8eWoKNxl1wIBAR1eGF5yY-ku9s2eYB0DXHONyClmnMuGCRVoJdUMXGB8wlFkiBB5Nz0umsxPrPHMKlROJwmIl6axcE/s1600/juicetart+069.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw5HQha77bzE9qOd3ImQNR84Aqkivvl6efC_a3ZueOf6hQKebkX8eWoKNxl1wIBAR1eGF5yY-ku9s2eYB0DXHONyClmnMuGCRVoJdUMXGB8wlFkiBB5Nz0umsxPrPHMKlROJwmIl6axcE/s320/juicetart+069.JPG" alt="" id="BLOGGER_PHOTO_ID_5594830683055374802" border="0" /></a><span style="font-weight: bold;">This has got to be the best hand-sanitizer ever!! I go through a lot of it, and not because I'm a germophobe. I live in the city, take public transit and work with kids who are pro-stars at sharing all kinds of germy goodness. I've been using this for just over two years now, and haven't been sick with anything since (aspiration pneumonia doesn't count). Not only does it smell good, but it's alcohol-free so I don't have to worry about having kiddos from work using it. I pretty much use it in place of rubbing alcohol with all of Jerome's stuff. </span><a style="font-weight: bold; color: rgb(255, 255, 255);" href="http://www.cleanwelltoday.com/">http://www.cleanwelltoday.com</a><br /><br /><div style="text-align: center;"><span style="font-weight: bold;font-size:130%;" >Hydration, blood-pressure and tachycardia<br /></span><br /><div style="text-align: left; font-weight: bold;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifWmd0UXVWLhtdKHxYXKo_aKOXzVL9NXJxexHZ-89QCStVCkv3n445T4OHY9VJaNjPFEvn3FAjOfdXu04RSZHGQc1OwzUzU6nzMAeyY_qqpALfg951mWZGYiSF3h0eNMqghL0FjGoLsxk/s1600/juicetart+072.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifWmd0UXVWLhtdKHxYXKo_aKOXzVL9NXJxexHZ-89QCStVCkv3n445T4OHY9VJaNjPFEvn3FAjOfdXu04RSZHGQc1OwzUzU6nzMAeyY_qqpALfg951mWZGYiSF3h0eNMqghL0FjGoLsxk/s320/juicetart+072.JPG" alt="" id="BLOGGER_PHOTO_ID_5594842092675356658" border="0" /></a>I've been using CALM for about 3 years now and think it's great. It helps with muscle tightness, tachycardia and hydration in general. Also to help relax the mind and regulate the nervous system. It dissolves in hot water, and doesn't really taste like anything so I mix it with tea or put it through Jerome. It also comes in a yummy lemon-raspberry flavour too! I use it at night, about an hour before bed to help wind down. <a style="color: rgb(255, 255, 255);" href="http://www.petergillham.com/wp/2010/01/natural-calm-plus-calcium/">http://www.petergillham.com/wp/2010/01/natural-calm-plus-calcium/</a><br /><br /></div><br /><div style="text-align: left; font-weight: bold;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl54C9KkmBc2mEQ8XmbCGjvgFAE5LPU12UnQEv_g_YZlKQn8Fx6nXnqnvJM-l_5jeJSlGqKBNyAFFW1W89HkkNo-lgSKAudeZ5zWXxkfN3UTnl8yZM9IhvRKD7KIbTPV2hj2mS-IfgtqE/s1600/juicetart+071.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl54C9KkmBc2mEQ8XmbCGjvgFAE5LPU12UnQEv_g_YZlKQn8Fx6nXnqnvJM-l_5jeJSlGqKBNyAFFW1W89HkkNo-lgSKAudeZ5zWXxkfN3UTnl8yZM9IhvRKD7KIbTPV2hj2mS-IfgtqE/s320/juicetart+071.JPG" alt="" id="BLOGGER_PHOTO_ID_5594833854976641122" border="0" /></a>This has been key in keeping my dysautonomia under control. Liquid electrolytes sans chemicals. It keeps me hydrated and really helps with muscle cramps and tightness. It doesn't really taste like anything and is meant to be added to juice or water. I just throw it in my fluids concoction for Jerome. Not only is the product awesome, but the company is fantastic. They really have the best interest of the consumer in mind and have some of the most excellent PR. <a style="color: rgb(255, 255, 255);" href="http://new.eletewater.com/">ttp://new.eletewater.com</a><br /></div><br /><div style="text-align: left; font-weight: bold;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OdlDIFVpolxWsiS5DVfJyDqX9jc5FW4x907BPCJlhaQPX9LAJbC7Bblby3olHoR5oY6Dxan5hWqq2L_CNdXpDb_1ULoxGATULkrCVMlHDmR6sbFmtxMq832zEHUtviprXMLp89vpDYI/s1600/juicetart+070.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7OdlDIFVpolxWsiS5DVfJyDqX9jc5FW4x907BPCJlhaQPX9LAJbC7Bblby3olHoR5oY6Dxan5hWqq2L_CNdXpDb_1ULoxGATULkrCVMlHDmR6sbFmtxMq832zEHUtviprXMLp89vpDYI/s320/juicetart+070.JPG" alt="" id="BLOGGER_PHOTO_ID_5594833841932054242" border="0" /></a>There's nothing horribly special about using salt to maintain blood-pressure. I use sea salt because it contains the trace-minerals we need and it's better for your body than table-salt. I buy it ground up into almost a powder, so it can be quickly dissolved in my fluids concoction that goes through Jerome.<br /><br />I left a few things out and will post about them later. I hope you can all find things that work for you, and make you feel good. Everybody should be able to live a happy and healthy life.<br /><span style="font-size:130%;"><br /></span><div style="text-align: center; color: rgb(255, 255, 153); font-weight: bold; font-style: italic;"><span style="font-size:130%;">"Let food be thy medicine and medicine be thy food."<br /><span style="font-size:78%;">(Hippocrates)</span></span></div></div><div style="text-align: left;"><br /><br /><span style="font-size:130%;"><span style="font-weight: bold;"></span></span></div></div></div></div></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-81329438917883790612011-04-16T15:58:00.000-07:002011-04-16T16:10:45.651-07:00Dropping the F-bomb<span style="font-weight: bold;"><br />This post contains language that is not appropriate for children or anyone who is uncomfortable with swearing. For anyone else, I think you may like it.</span><br /><br /><span style="font-weight: bold;">While there are many times when swearing is inappropriate (especially around little ears), there are definite opportunities where it makes for good expression.</span><br /><br /><span style="font-weight: bold;">One of those times is when you're trying to describe your pain. I think most of us are well educated when it comes to EDS (if you have it) and can "talk doctor", because we've all gone through years of advocating and fighting for what we need. It's always nice to be able to throw in a little F-bomb as it makes for a really good adjective. Especially because pain is subjective and let's face it, those pain-scales are crap. A lot of us have a really high pain tolerance, but when something hurts it really effing hurts.</span><br /><br /><span style="font-weight: bold;"> The other day I was getting changed after my acupuncture treatment and was feeling fantastic! I bent over and did something to my shoulder/back/neck. It really effing hurts anytime I use my neck or am holding my head up. Same with using my arms...Thinking it's a subluxed rib or vertebrae. Either way, holy fuck does it hurt. I've been incapacitated from pain for the last 3 days. Jerome is still taking his sweet time healing, I can't lay on my stomach, and getting an adjustment with the chiropractor would hurt J even more. This is rather annoying since I've been doing so well. The weather this weekend is absolute crap so I'm not missing out on too much. I was hoping to get a ton of studying done and more organizing. I can't do much of anything...Fak!</span><br /><br /><span style="font-weight: bold;">This has been a popular saying among the FB bendy community. I say it all time...</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ke7rG3f7hH5j3Au3FamCIqtOfDMbJokeQz-HtB0tV9Rxm5R2B4S78I6Eq4ia4PPVvh9SUPpIEfNWhwsfpu-u6AlobkA6A8yg4o3gxg2dQ74tzTWNxA6PzajV5cxZw7P4eDqIHtAdGew/s1600/Picture0263.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ke7rG3f7hH5j3Au3FamCIqtOfDMbJokeQz-HtB0tV9Rxm5R2B4S78I6Eq4ia4PPVvh9SUPpIEfNWhwsfpu-u6AlobkA6A8yg4o3gxg2dQ74tzTWNxA6PzajV5cxZw7P4eDqIHtAdGew/s320/Picture0263.jpg" alt="" id="BLOGGER_PHOTO_ID_5596310288078077554" border="0" /></a><span style="font-weight: bold;">Here are some comments I got on it:</span><br /><span style="font-weight: bold;" jsid="text"> -I hope you do feel better tomorrow! :( EDS sucks!<br /><br />-I am having a crappy pain day too-and you made me smile-so thanks love!<br /><br />-Feel better soon! We are matching right now! :p Well me with my vista anyway. :(</span><abbr style="font-weight: bold;" title="Thursday, April 14, 2011 at 4:37pm" date="Thu, 14 Apr 2011 13:37:42 -0700"><br /><br />-</abbr><span style="font-weight: bold;" jsid="text">I spy a neck collar?<br /><br />-You spied right...had an awesome treatment, got dressed, bent over and now I've<br />funky neck/traps woot! At least the rest of me feels okay.<br /><br />-Lots of soft hugs, and I couldn't agree more with the message!<br /><br />-You really shouldn't be so shy, speak up when something ticks you off.<br /><br />-Fuck You seems to be your favourite expression. Nothing like a swear word to release some frustration. Keep expressing yourself, Nakki<br /><br />-My shoulder is dangling out of the socket as I write this. Hope you feel better and get that collar off soon! Hugs<br /><br />-I hope your shouler goes back where it belongs soon. I love your dedication ♥ Gawd, we sound so effed up...boring is over-rated anyway.</span><br /><span style="font-weight: bold;" jsid="text"><br />-We call it dedication... others call it mental illness.<br /><br />- I hav a pretty bad cold mixed with pots...still i Send u a few spoons my dear!<br /><br />-Tomorrow........... ♥ Your pic sums it up nicely. ♥<br /><br />-Say it loud! Say it proud!<br /><br />-keep it coming ! :) That is what I think too!<br /><br />-my sentiments exactly. love, hugs and nothin' but good Ju Ju coming your way! ♥<br /><br />Then one of my friends sent this my way: <a href="http://www.good.is/post/why-swearing-is-good-for-you/"><span style="color: rgb(255, 255, 255);">http://www.good.is/post/why-swearing-is-good-for-you/</span></a><br />It made my day :)<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSH7jKqJTwFPP4sHqzPJ6KFgMLNJsbkOZ5f7XKDAbJxbmhyciwXtsfTnleptXOs0Mr1mSqHKvTHPetB4iYTagiHCPOfAvzuZLztdfKVWOy0EAh72YJbTOmwlPFrmo2yIw6D1w_OkwHKI/s1600/Picture0266.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSH7jKqJTwFPP4sHqzPJ6KFgMLNJsbkOZ5f7XKDAbJxbmhyciwXtsfTnleptXOs0Mr1mSqHKvTHPetB4iYTagiHCPOfAvzuZLztdfKVWOy0EAh72YJbTOmwlPFrmo2yIw6D1w_OkwHKI/s320/Picture0266.jpg" alt="" id="BLOGGER_PHOTO_ID_5596310287851682002" border="0" /></a><span style="font-weight: bold;">I think it's important to be able to have some deliciousness when feeling gross. We go through enough everyday and really, being able to eat something yummy is a right! Or at least it should be. What do you like to eat when you're feeling like ass? </span><br /><br /><span style="font-weight: bold;">You've got to check this video out, it's brilliant!</span><br /><br /><iframe src="http://www.youtube.com/embed/sv3tadz5Q3o?fs=1" allowfullscreen="" width="425" frameborder="0" height="344"></iframe><br /><br /><div style="text-align: center;"><span style="font-size:130%;"><span style="color: rgb(255, 255, 153); font-weight: bold;">"Be who you are, and say how you feel because those who mind don't matter, and those who matter don't mind."<br /><span style="font-size:78%;"> (Dr.Seuss)</span></span></span><span style="font-size:78%;"><br /></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com2tag:blogger.com,1999:blog-3251345393759638797.post-13910439159395488492011-04-12T20:01:00.000-07:002011-04-12T21:21:06.902-07:00Coming back to life, it's totally possible.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXiYoU62cYFO1rcDf2IGx5ayeYJVql_CtyuEa6_HL-C2s2H5y4OowIb0fzApt9U21a-LrHbFu7HfK7bgCh72TiX5enbivmtSCpE9Us4pPAsdT3Q4Zu8OJDT1fwayqRXj1g0775RAkHPQ/s1600/Picture0254.jpg"><br /></a><br /><span style="font-weight: bold;">I have about 5 posts that are half-written. I can't seem to spit out what I want these days, or it could also be that there's so much going on. A lot of changes have been happening, most of them really good.<br /><br />I've been able to sit out in the sun and do my readings/study for school and it's been fantastic. I've also been meeting with my OT a lot, and we've been making some pretty cool writing tools. Still working out the kinks as to what works best, but I think it's also a day to day thing because our bendy bodies change so much, even throughout the day. The biggest news is that my dysautonomia has gotten so much better. I've stayed away from the ER for 3 months now, which is a new record.</span><br /><br /><span style="font-weight: bold;">Check out the video, it will explain more.</span><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw15qkwrcPfP8xpChGhpePznPhNMkP9408GZIATEwPqLV6Rq5DouIozs4_sT6k6noueVOv3M4qka_YHEHWz2A' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><span style="font-weight: bold;">Now, this is not to say that I've been "cured" or anything from dysautonomia, but the symptoms are being managed and we've found what works. That in itself, is worthy of celebration in my eyes. Considering I lost a year and pretty much everything else in my life, I am beyond elated at the progress and now stability. It's so nice to be able to focus my energy on what I want, instead of just surviving. </span><br /><br /><span style="font-weight: bold;">I hope you can all find something that works for you, where you can feel good in every possible way. There's nothing like coming back to life...nothing....</span><br /><br /><span style="font-weight: bold;">p.s. Jerome 2.0 says "Hi". I still can't lay on my stomach and because of my awesome proprioception, high pain tolerance and poor wound healing, I keep hurting myself. It doesn't help that last week someone caught their bags on my tubing and yanked it out while I was going down the stairs. Here's to hoping Jerome fully heals soon. I'd like to be comfortable again as it's been almost a month, but it took forever to heal before so I'm not surprised.<br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXiYoU62cYFO1rcDf2IGx5ayeYJVql_CtyuEa6_HL-C2s2H5y4OowIb0fzApt9U21a-LrHbFu7HfK7bgCh72TiX5enbivmtSCpE9Us4pPAsdT3Q4Zu8OJDT1fwayqRXj1g0775RAkHPQ/s1600/Picture0254.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXiYoU62cYFO1rcDf2IGx5ayeYJVql_CtyuEa6_HL-C2s2H5y4OowIb0fzApt9U21a-LrHbFu7HfK7bgCh72TiX5enbivmtSCpE9Us4pPAsdT3Q4Zu8OJDT1fwayqRXj1g0775RAkHPQ/s320/Picture0254.jpg" alt="" id="BLOGGER_PHOTO_ID_5594918235896583234" border="0" /></a><br /><div style="text-align: center;"><span style="color: rgb(255, 255, 153); font-weight: bold;font-size:130%;" ><span style="font-style: italic;">"Develop an attitude of gratitude, and give thanks for everything that happens for you, knowing that every step is a step toward achieving something bigger and better than your current situation."<br />(Brian Tracy)</span></span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com1tag:blogger.com,1999:blog-3251345393759638797.post-83212920869247733082011-03-28T23:12:00.000-07:002011-04-06T11:04:56.929-07:00There ain't no party like a tattoo tea-party!!!<span style="font-weight: bold;">Once upon a time, there was a group of bendable princesses. They had met in a far away land called Baltimore,where they promised to always remain friends. Finally one day,they reunited and got dressed up for a tea-party. Now,this wasn't any tea-party... It was a tattoo tea-party!!!!</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnOhmkUkGYrXdUCxE8mY1pi7Usg64zHdpBqkVuJhUObG-ZZKhFWqmwkQxSXMnrS1l5Ny55gG5OlV9Yg9RVm5Vus_-ENZkUB3NTZn-AfZfIrx6HKmTUpUkD_LzCWObqijf0phHO50VgKSM/s1600/morefakes.jpg"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjEc-A-hw34UmJoRchfJh04oKF371Ot5PDZMwW5IO7Y5SaDCfX1frNci5fEmXnvzzWV6_HzmdHPd25u1mTqunaOAwpM13y_hoKm-I1fZaGx-sP4EkVniV5mOwIicxVq5Fb8ZY4jIDOKwM/s1600/tea.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 200px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjEc-A-hw34UmJoRchfJh04oKF371Ot5PDZMwW5IO7Y5SaDCfX1frNci5fEmXnvzzWV6_HzmdHPd25u1mTqunaOAwpM13y_hoKm-I1fZaGx-sP4EkVniV5mOwIicxVq5Fb8ZY4jIDOKwM/s320/tea.png" alt="" id="BLOGGER_PHOTO_ID_5589354382917197922" border="0" /></a><span style="font-weight: bold;">That's right, not only were there scones, cucumber sandwiches and clotted creme...There was ink!</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrI3VNtBloHtY3XRU0alOA3XHce3vjfPnlluZVMFyrOwtlG8dVlT6ueicWY-EEu09h3P5d1lpjP2VBSUpBYCOcMKKD2F6q69sFMEcvE8t-tKjITO9VbGVDTOsJPp-PyUlGZqidHnwN1CA/s1600/alexfiona.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 200px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrI3VNtBloHtY3XRU0alOA3XHce3vjfPnlluZVMFyrOwtlG8dVlT6ueicWY-EEu09h3P5d1lpjP2VBSUpBYCOcMKKD2F6q69sFMEcvE8t-tKjITO9VbGVDTOsJPp-PyUlGZqidHnwN1CA/s320/alexfiona.png" alt="" id="BLOGGER_PHOTO_ID_5589354380456430258" border="0" /></a><span style="font-weight: bold;">After they had enough of being all dainty and lady-like, they busted out the bendy tricks.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE0Kj_ZQGEsZtd79VbayMulLQA1_N6X7_Y7yUfmcwOKCtUGOJJkbXpc06llj7-kl1_RVQTAXoB5bODc0eIf2Or1F31LFaPN6JnQ6xDTzn8x0ODHjUiRMFo7ZphDQcFzuNL2fBdAHaQInw/s1600/3ofusklassy.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE0Kj_ZQGEsZtd79VbayMulLQA1_N6X7_Y7yUfmcwOKCtUGOJJkbXpc06llj7-kl1_RVQTAXoB5bODc0eIf2Or1F31LFaPN6JnQ6xDTzn8x0ODHjUiRMFo7ZphDQcFzuNL2fBdAHaQInw/s320/3ofusklassy.jpg" alt="" id="BLOGGER_PHOTO_ID_5589354391492331730" border="0" /></a><span style="font-weight: bold;">Who wouldn't want to ride off into the sunset with these princesses?</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMcFpmLU3zvJvBA1hBjwOGCV3Ln3kQj-XU9znd5SAhzasvg7nVA2nyH-OCUnLe62wjy882phGhSCYI8UJG10_F5pw3fUAsZ4amnVYtSniIjfkh6d9KH3MEbPAWEzJIdfMV3h19uN_S9XE/s1600/temporaryink.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMcFpmLU3zvJvBA1hBjwOGCV3Ln3kQj-XU9znd5SAhzasvg7nVA2nyH-OCUnLe62wjy882phGhSCYI8UJG10_F5pw3fUAsZ4amnVYtSniIjfkh6d9KH3MEbPAWEzJIdfMV3h19uN_S9XE/s320/temporaryink.jpg" alt="" id="BLOGGER_PHOTO_ID_5589354398688469442" border="0" /></a><span style="font-weight: bold;">Some opted for the temporary option, as those princesses could slay any dragon with their eyes closed.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgjETaHWaHCnQfVJyPbTxjI71ifHXZ2B_JOUv8twF7mmyFOyzfaCPVl_vGqSFFIgdQzrtsEq0QBupmNhcsjJAEdxnYnVWwfN2vW5EfNl5g4CH7oOZNUc6rt_2fs-TFJNl9RJylGca65pI/s1600/lotusink.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgjETaHWaHCnQfVJyPbTxjI71ifHXZ2B_JOUv8twF7mmyFOyzfaCPVl_vGqSFFIgdQzrtsEq0QBupmNhcsjJAEdxnYnVWwfN2vW5EfNl5g4CH7oOZNUc6rt_2fs-TFJNl9RJylGca65pI/s320/lotusink.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357720789709602" border="0" /></a><span style="font-weight: bold;">Then it was time to get down to important royal matters. The needles came out, and three princesses were ready to commit themselves to a lifetime of wonderful self-expressive art.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1vQ5iQMQyMK2bNIezGFj4C6T0sU6yA2DIKbjmPw9mHbERX3AeAPltWeh6ghRTNOhC6XE1bIL3RXw7S1bK7AItxLqoYUhn7NS_M3hrU0vEuDgMVCX62KX_-QdPfmZ-rjJ2cz-EmAyvqPY/s1600/preinkchristie.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 133px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1vQ5iQMQyMK2bNIezGFj4C6T0sU6yA2DIKbjmPw9mHbERX3AeAPltWeh6ghRTNOhC6XE1bIL3RXw7S1bK7AItxLqoYUhn7NS_M3hrU0vEuDgMVCX62KX_-QdPfmZ-rjJ2cz-EmAyvqPY/s320/preinkchristie.png" alt="" id="BLOGGER_PHOTO_ID_5589355886382756402" border="0" /></a><span style="font-weight: bold;">Princess Giggles wanted to go first. She may look innocent, but don't let that pretty face fool you.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg81K92wc5nfekUg5g5K4h1KBJs0Yr5c6NP6cfYo_HJt43Cgwp31P-6XXXIo2tj_vkGfn76NKluIhR_GL5jhF54VieDNYto4-G6D2NOWeiRLoViZnu2l8-40s2Rle4_RaqwI3rTW4NAUoc/s1600/inked.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 200px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg81K92wc5nfekUg5g5K4h1KBJs0Yr5c6NP6cfYo_HJt43Cgwp31P-6XXXIo2tj_vkGfn76NKluIhR_GL5jhF54VieDNYto4-G6D2NOWeiRLoViZnu2l8-40s2Rle4_RaqwI3rTW4NAUoc/s320/inked.png" alt="" id="BLOGGER_PHOTO_ID_5589355891340539170" border="0" /></a><span style="font-weight: bold;">She took those needles like a champ! Especially on the underside of her arm.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzojw9dnRlEjM5ymeTupOnNrh9ReCk6q_tUf6_3tYSJsBgw16vtp32IVHHRcLIZ5tiIn_c6aHZKSHUgS-E_OgDCbLC8NV9k2ggVPNyXMgVTjmZfVX8X9ht5PcNNtspPB7wW5vBCgPavbU/s1600/christietada.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzojw9dnRlEjM5ymeTupOnNrh9ReCk6q_tUf6_3tYSJsBgw16vtp32IVHHRcLIZ5tiIn_c6aHZKSHUgS-E_OgDCbLC8NV9k2ggVPNyXMgVTjmZfVX8X9ht5PcNNtspPB7wW5vBCgPavbU/s320/christietada.jpg" alt="" id="BLOGGER_PHOTO_ID_5589355890424364898" border="0" /></a><span style="font-weight: bold;">Ta Da!! Princess Giggles had the brilliant idea to combine sign language and text to say:"Zebras exist", with a lovely border from her favourite CD. This is based on the adage a lot of doctors are told "When you hear hoof beats, think of horses." Meaning, look for the most obvious symptoms and signs first. EDSer's say that "When you hear hoof beats, think zebras" or "Zebras exist." Meaning, don't just go after the obvious.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCzX9ldyc3pE5GvJlNmgMn5yiV_S8si546XFhb5kVY4fNN_4hrZAzyEbjlgUBX6HkC4pIJ1kmrFkg4JvRi0RTNbav5F9klCB0JFAk6tgh-t4h6Me85FMbYeXODixrHJjvhS65IzMsGRmI/s1600/preinktiff.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 133px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCzX9ldyc3pE5GvJlNmgMn5yiV_S8si546XFhb5kVY4fNN_4hrZAzyEbjlgUBX6HkC4pIJ1kmrFkg4JvRi0RTNbav5F9klCB0JFAk6tgh-t4h6Me85FMbYeXODixrHJjvhS65IzMsGRmI/s320/preinktiff.png" alt="" id="BLOGGER_PHOTO_ID_5589355898094345986" border="0" /></a><span style="font-weight: bold;">Next it was Princess Chuckles' turn. She wanted to try some Emla creme from the apothecary, complete with a frilly white glove.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdCiFwRLUE58CN4S8s3SNPcyXbMtk1SD03T8Sta6t7zbn0yN5KhU6KOcwbTzzL069BImAz5hPKN2cppjsnS-JCRYU-QaSHWi0zdhLQVVHisQdxNqAFjKBV4Wqr48lp9OxOpIej6Uz1sXk/s1600/tea.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdCiFwRLUE58CN4S8s3SNPcyXbMtk1SD03T8Sta6t7zbn0yN5KhU6KOcwbTzzL069BImAz5hPKN2cppjsnS-JCRYU-QaSHWi0zdhLQVVHisQdxNqAFjKBV4Wqr48lp9OxOpIej6Uz1sXk/s320/tea.jpg" alt="" id="BLOGGER_PHOTO_ID_5589355897685878418" border="0" /></a><span style="font-weight: bold;">Yes, a princess can have her tea and a tattoo. She can have it all!</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3epJDcDeLWEsTAaPeNB43CKQMVmnMW7OYx6711z5wD9nDvMJN1g9OjAzlYGv5-SmQOdp3h18C9Ityfq84OnRUI6VfQIp5EVYFjTt53qpfV75EZgZaBPh6UBswRhHGf3CCx_9OeNWx0jA/s1600/tiffsink.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3epJDcDeLWEsTAaPeNB43CKQMVmnMW7OYx6711z5wD9nDvMJN1g9OjAzlYGv5-SmQOdp3h18C9Ityfq84OnRUI6VfQIp5EVYFjTt53qpfV75EZgZaBPh6UBswRhHGf3CCx_9OeNWx0jA/s320/tiffsink.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357191707240754" border="0" /></a><span style="font-weight: bold;">We weren't sure if Princess Chuckles super-powers were at work or it was the creme, but it was a nice time to talk about the happenings around the kingdom.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsg6bxOyQ3OoIj771E6ItIzI6KklUN4u3R1tpfnSSzDX4gYkU6J0ALbK4T57WvWKslfx1AHPhRtRsH1WLdwLxJZF40tiHISohag2R2IbMbDgaylZoSInW4ShjOyBEjX-n8-X6rJOQ-UzU/s1600/tiffafter.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsg6bxOyQ3OoIj771E6ItIzI6KklUN4u3R1tpfnSSzDX4gYkU6J0ALbK4T57WvWKslfx1AHPhRtRsH1WLdwLxJZF40tiHISohag2R2IbMbDgaylZoSInW4ShjOyBEjX-n8-X6rJOQ-UzU/s320/tiffafter.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357191512199042" border="0" /></a><span style="font-weight: bold;">With some new ink, Princess Chuckles can take down any knight in a jousting match.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv4d7euZFW0YZejywZMuXT9wO2pv1C66a4fBkAv16haxuFpTmrsKEPa0Y2yGn575jzfxFD9zwsO-IuAQRhb0dS_EASmYcLTu3EaNNiLlXS0zgWhsFegVxv0fcsWV37YQD-rOrf1cjjdbY/s1600/EDS.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv4d7euZFW0YZejywZMuXT9wO2pv1C66a4fBkAv16haxuFpTmrsKEPa0Y2yGn575jzfxFD9zwsO-IuAQRhb0dS_EASmYcLTu3EaNNiLlXS0zgWhsFegVxv0fcsWV37YQD-rOrf1cjjdbY/s320/EDS.jpg" alt="" id="BLOGGER_PHOTO_ID_5589367923466241938" border="0" /></a><span style="font-weight: bold;">Especially with her Endless Determination & Strength. Princess Chuckles wanted to bring new meaning to EDS, and do it her way!!</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCgpUYBtwMgFHWWyS6JpafEzBNyv7YlQyudpRkdMex3AkCfhc753tktjB8gteZ8Gek6kuVdXwjaxCwVANTC_XAPmS6mEy51_nj5kfAa18wVJJlAMHTA1rUFaRlRvDnIIcySfxx7NAsBY/s1600/preinknak.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 134px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCgpUYBtwMgFHWWyS6JpafEzBNyv7YlQyudpRkdMex3AkCfhc753tktjB8gteZ8Gek6kuVdXwjaxCwVANTC_XAPmS6mEy51_nj5kfAa18wVJJlAMHTA1rUFaRlRvDnIIcySfxx7NAsBY/s320/preinknak.png" alt="" id="BLOGGER_PHOTO_ID_5589357194711748194" border="0" /></a><span style="font-weight: bold;">Next Princess Nakki's turn came. She was ready, especially since getting her shoulder put back together was no longer part of her royal duties. Ink was far better than any battle scars.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuclz8vJDmDZfy-qlgxYSMh8hLOPlCOjAmMluxGk25TTfxg88Bx9r-b9fkUEaPcjI27zCc8kFCUPSrvEeGQpp6LBnI9Ce-rUbp1V-DgP5PUwQ9HUF4n6u0UeZZtvfQRSlVdyGqTCikcWo/s1600/offinnakkiland.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuclz8vJDmDZfy-qlgxYSMh8hLOPlCOjAmMluxGk25TTfxg88Bx9r-b9fkUEaPcjI27zCc8kFCUPSrvEeGQpp6LBnI9Ce-rUbp1V-DgP5PUwQ9HUF4n6u0UeZZtvfQRSlVdyGqTCikcWo/s320/offinnakkiland.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357193936788386" border="0" /></a><span style="font-weight: bold;">She also had a lovely time talking about those crazy unicorns running amok throughout the kingdom.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrkvjF3fUjw8ODR7CwqVKeWy1VoVHhAC7BfYLBKHFObpAS57YG-f2Wrcae1_mPUpjZNKKYB7t7CohFWv_JbRhh_bYbiqSSTCYuA6hBwLhvhTk7iVC1SKnPVXU73iEviMrY8tebR5u1U90/s1600/surprise.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrkvjF3fUjw8ODR7CwqVKeWy1VoVHhAC7BfYLBKHFObpAS57YG-f2Wrcae1_mPUpjZNKKYB7t7CohFWv_JbRhh_bYbiqSSTCYuA6hBwLhvhTk7iVC1SKnPVXU73iEviMrY8tebR5u1U90/s320/surprise.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357195253836978" border="0" /></a><span style="font-weight: bold;">Oh my word! Princess Nakki isn't all sugar,spice and everything nice... Just kidding.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5fikUusQ9mYD7KCQHouN6od9WAcTwy1iuQymtW7LIW0kXOYcaeNhGxJM2e31qLOsNZvIvCAePJZNemrfY72JxKvRAuUVChnlkaoaq4Ryb6N8pWuwOQHDBZJZLFT8IdL16OvY-36-4PRY/s1600/Picture0234.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5fikUusQ9mYD7KCQHouN6od9WAcTwy1iuQymtW7LIW0kXOYcaeNhGxJM2e31qLOsNZvIvCAePJZNemrfY72JxKvRAuUVChnlkaoaq4Ryb6N8pWuwOQHDBZJZLFT8IdL16OvY-36-4PRY/s320/Picture0234.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357720978696930" border="0" /></a><span style="font-weight: bold;">Princess Nakki was very happy with the final product. Especially since the blue ink glows in the dark! Also, that she can always carry a reminder about how far she has come on her journey,and to never lose sight of what's important.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE5-7ZYh4iEEQvk2mPbvAqHf45AMUTiXIog5JfmQFmBQTvgputEvEkyVgx0Nk0ZZb9cGPOwzuRtDEhKrS9TCF6N6XTLIa_aoAFWzPSxE3f6YMcverEXEEIUExTu9qGLcSOpoO18GuFF1o/s1600/bustinoutvino.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE5-7ZYh4iEEQvk2mPbvAqHf45AMUTiXIog5JfmQFmBQTvgputEvEkyVgx0Nk0ZZb9cGPOwzuRtDEhKrS9TCF6N6XTLIa_aoAFWzPSxE3f6YMcverEXEEIUExTu9qGLcSOpoO18GuFF1o/s320/bustinoutvino.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357727775865698" border="0" /></a><span style="font-weight: bold;">Then it was time to have some more happy juice. All the princesses found their lack of proprioceptive awareness rather entertaining, since it was no different after some of that juice.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0KhUTEBn1n5yJrgfIy5cvca5Eq5zQPTvaU_XkAlXpj-aFDvAqHh4UqcaDruwlXGJFcUIqqA5i_WHjYYaEulSYpesRbuASCa0721GpaMlhqgOSFmsKSnYhwHdXOyjijXSwj1DL4P38sDE/s1600/edsbreakingsomething.jpg"><br /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmSW60q_wNWDRf_c4qF2RciTURLx4VpJ6KwVXo1arDjeu-SRByBO4JKp_jePFw7oYgyrhygwWkOCX3ednVpMwrtru_ER84BO39WWKSztddBjXW0EbPB93Eti3ILBrRBMna-jDo8yX4XI/s1600/jeromelikesredwine.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmSW60q_wNWDRf_c4qF2RciTURLx4VpJ6KwVXo1arDjeu-SRByBO4JKp_jePFw7oYgyrhygwWkOCX3ednVpMwrtru_ER84BO39WWKSztddBjXW0EbPB93Eti3ILBrRBMna-jDo8yX4XI/s320/jeromelikesredwine.jpg" alt="" id="BLOGGER_PHOTO_ID_5589358350797019266" border="0" /></a><span style="font-weight: bold;">Court-jester Jerome provided some entertainment. Princess Nakki learned that she would rather stick to letting Jerome have vodka or rum instead. Red wine stained Jerome and his props.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0KhUTEBn1n5yJrgfIy5cvca5Eq5zQPTvaU_XkAlXpj-aFDvAqHh4UqcaDruwlXGJFcUIqqA5i_WHjYYaEulSYpesRbuASCa0721GpaMlhqgOSFmsKSnYhwHdXOyjijXSwj1DL4P38sDE/s1600/edsbreakingsomething.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0KhUTEBn1n5yJrgfIy5cvca5Eq5zQPTvaU_XkAlXpj-aFDvAqHh4UqcaDruwlXGJFcUIqqA5i_WHjYYaEulSYpesRbuASCa0721GpaMlhqgOSFmsKSnYhwHdXOyjijXSwj1DL4P38sDE/s320/edsbreakingsomething.jpg" alt="" id="BLOGGER_PHOTO_ID_5589357734797058802" border="0" /></a><span style="font-weight: bold;">The princesses laughed and laughed about breaking things, because they felt like they were the only ones in their kingdom who had such talent.</span><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb7SltQvQetYjr2LJvFe5THqfopQlw07uIRrtcaUX2NT8QiszJHEakQOMWMiUYBcXINF2Csf-4FW2tyu5rj69aacMKmryCI8M3nsrg2zI8w0i_hi9l8k5USXEM_WbooH2PkYAjygqHipI/s1600/weshoulddothisallthetime.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb7SltQvQetYjr2LJvFe5THqfopQlw07uIRrtcaUX2NT8QiszJHEakQOMWMiUYBcXINF2Csf-4FW2tyu5rj69aacMKmryCI8M3nsrg2zI8w0i_hi9l8k5USXEM_WbooH2PkYAjygqHipI/s320/weshoulddothisallthetime.jpg" alt="" id="BLOGGER_PHOTO_ID_5589358355800440194" border="0" /></a><span style="font-weight: bold;">Princess must always be dainty, and dressed their best.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnOhmkUkGYrXdUCxE8mY1pi7Usg64zHdpBqkVuJhUObG-ZZKhFWqmwkQxSXMnrS1l5Ny55gG5OlV9Yg9RVm5Vus_-ENZkUB3NTZn-AfZfIrx6HKmTUpUkD_LzCWObqijf0phHO50VgKSM/s1600/morefakes.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnOhmkUkGYrXdUCxE8mY1pi7Usg64zHdpBqkVuJhUObG-ZZKhFWqmwkQxSXMnrS1l5Ny55gG5OlV9Yg9RVm5Vus_-ENZkUB3NTZn-AfZfIrx6HKmTUpUkD_LzCWObqijf0phHO50VgKSM/s320/morefakes.jpg" alt="" id="BLOGGER_PHOTO_ID_5589361113832028514" border="0" /></a><span style="font-weight: bold;">Until they get tired of it, throw on some pj's and apply more ink.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw_rGuq8AJHrKOo67ohy-UN1AMUAN3glFzM4JfZQQzipG2m7COtYE3ptvjuceflhU0KaPGzjRwdDqSermFP0FURzXNU-YB8Q77TOysvNbohNxDPliDm-57BauL0VUxY_jwMHiQzC_zA8c/s1600/bendytoes.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw_rGuq8AJHrKOo67ohy-UN1AMUAN3glFzM4JfZQQzipG2m7COtYE3ptvjuceflhU0KaPGzjRwdDqSermFP0FURzXNU-YB8Q77TOysvNbohNxDPliDm-57BauL0VUxY_jwMHiQzC_zA8c/s320/bendytoes.jpg" alt="" id="BLOGGER_PHOTO_ID_5589358358054908402" border="0" /></a><span style="font-weight: bold;">Since bendy princesses spend lots of time on the floor, they decided to compare toes to see who would fit in a glass slipper. Would it be a hyper-mobile, classical or vascular princess?</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjUUp_2NfFSryXLtyBn3HbPvEakHk96gYnhRkOEt7iM8akGHYPbNoxK5mGmvhdMx_U85c9KwJTMa23RVuTEGLzbk4XdFQntXKfiUcbEGa7lC28ashdJryII5QqvZQ7vJ8_4cinZTxluj4/s1600/howitends.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjUUp_2NfFSryXLtyBn3HbPvEakHk96gYnhRkOEt7iM8akGHYPbNoxK5mGmvhdMx_U85c9KwJTMa23RVuTEGLzbk4XdFQntXKfiUcbEGa7lC28ashdJryII5QqvZQ7vJ8_4cinZTxluj4/s320/howitends.jpg" alt="" id="BLOGGER_PHOTO_ID_5589361115527707042" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb7SltQvQetYjr2LJvFe5THqfopQlw07uIRrtcaUX2NT8QiszJHEakQOMWMiUYBcXINF2Csf-4FW2tyu5rj69aacMKmryCI8M3nsrg2zI8w0i_hi9l8k5USXEM_WbooH2PkYAjygqHipI/s1600/weshoulddothisallthetime.jpg"><br /></a><span style="font-weight: bold;">The stroke of midnight had passed, and the prince rode off in his carriage without a princess. Too bad for him. These princesses had the time of their lives and rocked that tea-party!</span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmSW60q_wNWDRf_c4qF2RciTURLx4VpJ6KwVXo1arDjeu-SRByBO4JKp_jePFw7oYgyrhygwWkOCX3ednVpMwrtru_ER84BO39WWKSztddBjXW0EbPB93Eti3ILBrRBMna-jDo8yX4XI/s1600/jeromelikesredwine.jpg"><br /></a><div style="text-align: center;"><span style="color: rgb(255, 255, 153);font-size:180%;" ><span style="font-weight: bold; font-style: italic;">"And they all lived happily ever after....."</span></span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com3tag:blogger.com,1999:blog-3251345393759638797.post-57952780036371938122011-03-21T21:05:00.000-07:002011-03-22T00:54:14.860-07:00It's all good. New J-tube, adaptive goodness and testing theories.<div style="text-align: center;">* <span style="font-weight: bold;">This post contains some potentially gross looking pictures of feeding tube stuff, don't tell me I never warned you*</span><br /></div><br /><br /><span style="font-weight: bold;">It's not any news that life has been on the verge of insanity. Wait, that's pretty normal around here.</span><br /><br /><span style="font-weight: bold;">I guess I'll start with the introduction of Jerome 2.0</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sCp_zcC3mIht6aTrFS91Xeq77x8HL1fHD2Br50X7VfPLc6yDFYRaYdIZmDU8gr41y6GNIFoW19K0RaQy4LWWN3wfjodm2DL6SazeOczQbeZsC_RnDMdEF7B3y7CM5J-shj8iBAsflQE/s1600/Picture0190.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sCp_zcC3mIht6aTrFS91Xeq77x8HL1fHD2Br50X7VfPLc6yDFYRaYdIZmDU8gr41y6GNIFoW19K0RaQy4LWWN3wfjodm2DL6SazeOczQbeZsC_RnDMdEF7B3y7CM5J-shj8iBAsflQE/s320/Picture0190.jpg" alt="" id="BLOGGER_PHOTO_ID_5586763720709925922" border="0" /></a><span style="font-weight: bold;">Yup, it's a Mic-Key button and I love it.</span><br /><span style="font-weight: bold;">Getting it put in was a bit of an ordeal and expensive, but totally worth it. I got it done under sedation and a ton of locals. The tube didn't go in easy, it involved a lot of poking, digging and expanding. It also hurt. A lot.</span><br /><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhan2Wmh14n1Bnuh3IT4NWO642FBCOcWtzdZIwhbGrmGUZI9DIbL5x65CeiFee40y9t90LKBKGLlYm4oK-_XLQAmsQFvv8EIP1h9tWh5oZnh3GzxzMcYJHkDQIrxWPeuhEVZiPQyXHh4A/s1600/jerome+2.0+003.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhan2Wmh14n1Bnuh3IT4NWO642FBCOcWtzdZIwhbGrmGUZI9DIbL5x65CeiFee40y9t90LKBKGLlYm4oK-_XLQAmsQFvv8EIP1h9tWh5oZnh3GzxzMcYJHkDQIrxWPeuhEVZiPQyXHh4A/s320/jerome+2.0+003.JPG" alt="" id="BLOGGER_PHOTO_ID_5586769337201728050" border="0" /></a><span style="font-weight: bold;">For the most part, the swelling has gone down, it's stopped bleeding and far less sore. Balloon stomach wasn't so much fun.</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHvIl7rI_mBWIx4YbNjoHDe7f2FS3pHyFl66x3cNE-3jNmNjBiv3kq2NDa5cDxkT5gS8HkV3QGqCytT3Qx72QpvEupPBJZDFVMroZYywITXoR5UHztYHoqOMHFGyxCeV0pjtvobGIxhP8/s1600/jerome+2.0+005.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHvIl7rI_mBWIx4YbNjoHDe7f2FS3pHyFl66x3cNE-3jNmNjBiv3kq2NDa5cDxkT5gS8HkV3QGqCytT3Qx72QpvEupPBJZDFVMroZYywITXoR5UHztYHoqOMHFGyxCeV0pjtvobGIxhP8/s320/jerome+2.0+005.JPG" alt="" id="BLOGGER_PHOTO_ID_5586769342140803282" border="0" /></a><span style="font-weight: bold;">I can sit up and stand straight now, but can't bend enough to put my back and SI joint where it belongs. Laughing, coughing, didgeridooing all still hurt and laying on my stomach is dodgy. Soon this will all be a thing of the past and Jerome 2.0 will be fantastic. I've been rocking the natural and Chinese medicine for this, and it all seems to be going well. My most current issue, is that my skin doesn't seem to like having the button too much.</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxYfj27N_kxwAS0VHc4kBZadzNFsO8qDG2kM4z_KIzfYgVv2IptN8Y2_RPaq0n7GAaKnEnp7jpOMmWF6yxuvmVWWCwQRnHMl5MFvm2to_cBH3zNYoShtd-6R5g_W1or3wlzUuXzaWslJk/s1600/Picture0196.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxYfj27N_kxwAS0VHc4kBZadzNFsO8qDG2kM4z_KIzfYgVv2IptN8Y2_RPaq0n7GAaKnEnp7jpOMmWF6yxuvmVWWCwQRnHMl5MFvm2to_cBH3zNYoShtd-6R5g_W1or3wlzUuXzaWslJk/s320/Picture0196.jpg" alt="" id="BLOGGER_PHOTO_ID_5586771588995623906" border="0" /></a><span style="font-weight: bold;">I think it's a matter of compression from the swelling, irritation because the button is right on my skin and we can't forget about tape-rash. For now, I cover Jerome with Tegaderm while I'm in the shower to keep it dry. The button is bigger in diameter than the tube so the stoma had to be expanded. That was a blast! Wow, it looks like I've got a baby in there too. Yeah, no chance of that happening with this girl.</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDWmjslesRAw0iy8MyfJYJFnXN6B-QdG73Ws7qyXAGMvTNv7PS3tqXRlZGysKHNv8XmiuFkjgCbyNVE8ut-_QIqXNAku0oHShHYrCgV31Q_rgiH1RRf5ENavlNJ9Esq-Yi_OlCFjbZ08/s1600/Picture0199.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDWmjslesRAw0iy8MyfJYJFnXN6B-QdG73Ws7qyXAGMvTNv7PS3tqXRlZGysKHNv8XmiuFkjgCbyNVE8ut-_QIqXNAku0oHShHYrCgV31Q_rgiH1RRf5ENavlNJ9Esq-Yi_OlCFjbZ08/s320/Picture0199.jpg" alt="" id="BLOGGER_PHOTO_ID_5586769346714178738" border="0" /></a><span style="font-weight: bold;">I love home-care. When I got out of the hospital, I was officially declared permanently disabled needing on-going care. There's a nurse that comes, asks me what I need and then a couple days later I get a box of supplies. It's a pretty sweet deal. Today's box included the Tegaderm patches I asked for, so I could cover up Jerome. I got them alright, they're the size of my head! My independence sometimes baffles a lot of people in the medical profession. I think having patients who take initiative and use other methods of healing freak them out a bit.</span><br /><br /><span style="font-weight: bold;">While we're on the subject of the tube, I had other interesting happenings going on just before I got Jerome 2.0 put in. Whatever was draining out of the stoma was irritating my skin. It was making it itch, crack and blister. Otherwise, everything else felt fine. I chalked up this theory that it was a PH issue in my stomach. Normally, or rather I used to be on an high-alkaline diet to control the reflux. When I had the pneumonia thing going on, I was hooked up to my pump pretty much all the time, with the exception of a few hours during the night. That meant, I wasn't getting anything alkaline in to help neutralize all the acid that likes to live in my stomach. My tube goes through my stomach to my jejunum, so whatever is brewing in there was I guess burning my skin. </span><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBQPgeFN-Pt8yqf6PUg6M8sLv6UTty6IAjVkgw8eGUqmsRO3IeqJ7nZplj4lMn5hhQLZxhs4eK9_BrX2cn-SZveiReTx8Kl49X3b5Acls_5KBnuQtU0so83hvn9Vfm5Ln575vVcEu7NZk/s1600/funky+skin+321.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBQPgeFN-Pt8yqf6PUg6M8sLv6UTty6IAjVkgw8eGUqmsRO3IeqJ7nZplj4lMn5hhQLZxhs4eK9_BrX2cn-SZveiReTx8Kl49X3b5Acls_5KBnuQtU0so83hvn9Vfm5Ln575vVcEu7NZk/s320/funky+skin+321.JPG" alt="" id="BLOGGER_PHOTO_ID_5586778684108507394" border="0" /></a><span style="font-weight: bold;">I decided to cut out anything acid forming and push the alkalines to see what would happen.</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifHGdn0DgyiT3dR5SwpbW-wymWd9dC5gJI-O4FZgyO-FT4c7XkklKuwCZQWS_ABG_4c_cjMa5RuItxsV06A9_Y-MsQxXt9uv_J4H18S10E0ORRbiNaS53X5o1VFB4Wdy7DswzdJ63pweY/s1600/funky+skin+336.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifHGdn0DgyiT3dR5SwpbW-wymWd9dC5gJI-O4FZgyO-FT4c7XkklKuwCZQWS_ABG_4c_cjMa5RuItxsV06A9_Y-MsQxXt9uv_J4H18S10E0ORRbiNaS53X5o1VFB4Wdy7DswzdJ63pweY/s320/funky+skin+336.JPG" alt="" id="BLOGGER_PHOTO_ID_5586778684642256354" border="0" /></a><span style="font-weight: bold;">My theory was right!! Lemon water is my best friend. I can't taste the electrolytes I mix in, and the lemons which are an acid, turn to an alkaline when they get digested in your stomach. They help to break down food and absorb nutrients. It also tastes delicious, what more could anyone want?</span><br /><br /><span style="font-weight: bold;">Part of my package that involves home-care includes giving me access to other services I need. So now I've got some fantastic Occupational Therapists. I'm their first patient with EDS, like everyone else and they've been nothing but awesome about the whole thing. Every time I come out of an appointment with them I'm still baffled. It's the good kind though. In my last post, I wrote about the CMC/wrist splint we made. I love that thing, I can use my hands again without hurting myself.</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv96HvrPlBdfj6cZTrzdjf1CUzympxGU30Net02QLZWZdMxQMrMCMZpGKxEducvjliIgJEDEcuYaTGzjfqeGQxw6zPeMP0KqwVWeUjTT16EA_D9b3X3aFCoue7ikuO0Oa8CspGqZ1a99A/s1600/wrist+splint+%2523+1+001.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv96HvrPlBdfj6cZTrzdjf1CUzympxGU30Net02QLZWZdMxQMrMCMZpGKxEducvjliIgJEDEcuYaTGzjfqeGQxw6zPeMP0KqwVWeUjTT16EA_D9b3X3aFCoue7ikuO0Oa8CspGqZ1a99A/s320/wrist+splint+%2523+1+001.JPG" alt="" id="BLOGGER_PHOTO_ID_5586786676858867650" border="0" /></a><span style="font-weight: bold;">I took a Sharpie marker to it because braces shouldn't be plain....ever. The writing is derived from a Japanese proverb that says "Fall seven times, stand up eight." Yesterday I checked to make sure I had written it correctly. Boy, was I glad to know that I didn't insult an entire culture or make an ass of myself.</span><br /><br /><span style="font-weight: bold;">I also got a few ring splints. At the conference this summer, I got to try on different kinds and was amazed that such things existed. I could use my fingers, and they wouldn't bend backwards... I'm still not sure exactly what I want yet and don't want to make any hasty decisions about them before I apply for the funding, the silver ones are insanely expensive.</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq3cbplGXGPNzgWJgDNkvJhCzHClKhqeE57Wa0YcNwq0ucRelDv0MLACvR4zAOsYSt6CJJm7Ya83UKejhTgRayB5VksruhLrxamz_kDym8hXVu2QNErCvsmF_1LOPn_KZnwqZc-jN_MEU/s1600/purple+bananas+018.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq3cbplGXGPNzgWJgDNkvJhCzHClKhqeE57Wa0YcNwq0ucRelDv0MLACvR4zAOsYSt6CJJm7Ya83UKejhTgRayB5VksruhLrxamz_kDym8hXVu2QNErCvsmF_1LOPn_KZnwqZc-jN_MEU/s320/purple+bananas+018.JPG" alt="" id="BLOGGER_PHOTO_ID_5586786666443046082" border="0" /></a><span style="font-weight: bold;">This is what happens when I push on anything with my fingers. I think it grosses people out on the elevators when I'm pushing the buttons, hahaha.</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDHZ1Va7Himt7-EH6oOVHtJMJ-QhT2c9LHMIzAeZDqzVUiXHUEKnvQm6OnnhN1a0P_lAciyuWoSSJ4N_lqb3IyqDOhJFV6X_ZfcptrC-UT5XkXrarNNeF3qm_InrGpTZxmHw8RztSe4KM/s1600/purple+bananas+019.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDHZ1Va7Himt7-EH6oOVHtJMJ-QhT2c9LHMIzAeZDqzVUiXHUEKnvQm6OnnhN1a0P_lAciyuWoSSJ4N_lqb3IyqDOhJFV6X_ZfcptrC-UT5XkXrarNNeF3qm_InrGpTZxmHw8RztSe4KM/s320/purple+bananas+019.JPG" alt="" id="BLOGGER_PHOTO_ID_5586786670241562050" border="0" /></a><span style="font-weight: bold;">Check that out!! Look how straight they are! It took a few days to get used to having fingers that didn't bend so much, but having more use of them is priceless.</span><br /><br /><span style="font-weight: bold;">Last week we made some adaptive awesomeness for my syringes. The surface area is small, and requires a lot of fine-motor skills. I don't have that anymore, and with bendable fingers it's a recipe for disaster sometimes. When you've got a syringe full or greens mix waiting to go in a tube and you're fingers slip, greens mix ends up every else but in the tube...When you sublux your fingers at the same time, it's a party!!</span><br /><br /><span style="font-weight: bold;">The pieces are easy to take on and off the syringes and make it so much easier to use.</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3ghxEqoEgwX3MQ7eQ3SiobxbalG8jWYB8SxresfM0NRj2FkEaYui5tw9kbMP24rLzM4YfOWtkuV5UsSFQ-0QzQ77nvjbKQ7WVf-44hy1f_r7_IDOVIhbT5ZbdC8zKAbn_2XZcvqI4oQ0/s1600/mokkey+032.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3ghxEqoEgwX3MQ7eQ3SiobxbalG8jWYB8SxresfM0NRj2FkEaYui5tw9kbMP24rLzM4YfOWtkuV5UsSFQ-0QzQ77nvjbKQ7WVf-44hy1f_r7_IDOVIhbT5ZbdC8zKAbn_2XZcvqI4oQ0/s320/mokkey+032.JPG" alt="" id="BLOGGER_PHOTO_ID_5586791073369145042" border="0" /><br /></a><span style="font-weight: bold;">Ta Da!!</span><br /><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioowOIZVBVXhJRpOoU8BCiYoRPkzrahXQmGLdhHnJOQZP-yiJDpLEVKPWWXoPzbqJtr51YhypscgM6jovO15kEw3Ta3ujlVTVUEuLq3U2ygNKfV2kyXRYUoSoLUHUsma4nsYPs-6WmCGQ/s1600/mokkey+033.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioowOIZVBVXhJRpOoU8BCiYoRPkzrahXQmGLdhHnJOQZP-yiJDpLEVKPWWXoPzbqJtr51YhypscgM6jovO15kEw3Ta3ujlVTVUEuLq3U2ygNKfV2kyXRYUoSoLUHUsma4nsYPs-6WmCGQ/s320/mokkey+033.JPG" alt="" id="BLOGGER_PHOTO_ID_5586791587179492674" border="0" /></a><span style="font-weight: bold;">Cool eh?! I'll have to get pictures of it in action, so you can get the whole idea. </span><br /><br /><br /><span style="font-weight: bold;">When everything seems impossible and I want to surrender myself to EDS, I realize that I'm surrounded by truly incredible people who give me that extra push when I need it, in their own little way. They put wind back in my sails, so I can continue on with my own adventure and live my best possible life. I am continually blown away and so thankful for it all. </span><br /><br /><div style="text-align: center; font-style: italic;"><span style="font-weight: bold; color: rgb(255, 255, 153);font-size:130%;" >"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."</span><br /></div><div style="text-align: center; color: rgb(255, 255, 153);"><span style="font-size:78%;"><span style="font-style: italic;">(</span>Harriet Tubman)<br /></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com3tag:blogger.com,1999:blog-3251345393759638797.post-69156262737608365922011-03-10T17:29:00.000-08:002011-03-10T21:07:35.221-08:00Doule-Sick burger with a side of fries<span style="font-weight: bold;">This post doesn't have any specific direction, so I hope you can tolerate my nonsense. Here we go...</span><br /><br /><span style="font-weight: bold;">Since my last post I have been awesome enough to choke and aspirate on something. I don't know exactly what it was (other than food) because I choke on everything. Anyway, I'm pretty sure I had some kind of pneumonia starting up. I got the usual symptoms and as an added bonus: dysautonomia wanted in on the fun too. That meant, I spent 1.5 weeks walking the line between being able to kick it myself, and ending up in the hospital. I had been hooked up to my Joey-pump for the usual amount of time, but my body was in major over-response mode, and the usual 9hrs wasn't enough. I ended up needing to be hooked up for about 21 hours at a time. I hate the sound of anything mechanical,electronic or white noise when I'm sleeping. I can deal with anything else though. The Joey-pump was annoying to say the least. Never mind needing to get up and use the washroom, re-fill the fluids concoction every couple of hours and wake up to the occasional alarm. It was everything I wanted to avoid when I originally got the pump. yay. I tried to avoid it, but there was no way that was happening, because I'd wake up feeling like a complete zombie. Then, it would take me forever to get the energy to actually get myself hooked up and sorted out.<br /><br />This was my first time being sick (with something that wasn't dysautonomia) since getting sick, so I had no idea what I was in for. I got pretty nervous in the beginning because I had been feeling good before and was getting what I though was enough fluids. After checking it out with my bendy friends on Facebook, I realized that this over-response stuff was normal. Getting even more sick will make dysautonomia go crazy...Strangely enough, a lot of us have been slammed lately. It all seems to happen at the same time, it's got be the moon but more likely the season change. I've been able to stay away from the ER and have avoided antibiotics. I had resisted it because just before that, I was on them for infected Jerome. I also kicked this aspiration/pneumonia thing last time without anything so I wanted to try it again. So far, so good...As much as this has sucked, I know that I can feel good again. I just have to listen to my body and ride this thing out. It's happening, just slowly...<br /><br /><br /></span><br /><span style="font-weight: bold;">Thankfully I've had this stuff, and some treatments to help me along (or do most of the work).</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOqEg-qURSMUbkelCTg5FTrvAxOGIEwUuApsV3nFRyfEj_ICyoDNxF1xcbFbeaqQ74yAye_OJXP2lLzSJNFTNYfZi6bDwVzMYXIiAF2uQoUqAfxusZ3i3-RuPA2HgqA4v8pMqF5TOHucg/s1600/002.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOqEg-qURSMUbkelCTg5FTrvAxOGIEwUuApsV3nFRyfEj_ICyoDNxF1xcbFbeaqQ74yAye_OJXP2lLzSJNFTNYfZi6bDwVzMYXIiAF2uQoUqAfxusZ3i3-RuPA2HgqA4v8pMqF5TOHucg/s320/002.JPG" alt="" id="BLOGGER_PHOTO_ID_5582641191466740434" border="0" /></a><span style="font-weight: bold;">Dear: ER, I've avoided you again...buhahahaha!</span><br /><br /><span style="font-weight: bold;"><br />I sometimes do stupid things when I'm brain-foggy... Things like this:</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCDIwUeg-8v_VGSJpnfurHeHnoKpVd4VLdT9kRNc-1Q5RJd3CwHdo5vdcchdLzWIEEij8xbWYTrMemL8XEftDbYgZ8YU_dAB_Tm_RtUf24-ko86Wau7sJyoHP_537Q7WryK8kz4dRk81c/s1600/purple+bananas+010.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCDIwUeg-8v_VGSJpnfurHeHnoKpVd4VLdT9kRNc-1Q5RJd3CwHdo5vdcchdLzWIEEij8xbWYTrMemL8XEftDbYgZ8YU_dAB_Tm_RtUf24-ko86Wau7sJyoHP_537Q7WryK8kz4dRk81c/s320/purple+bananas+010.JPG" alt="" id="BLOGGER_PHOTO_ID_5582647912800317762" border="0" /></a><span style="font-weight: bold;">Can't a girl just have some tomato soup?! Epic Fail!!!</span><br /><br /><span style="font-weight: bold;"><br />This week I also got some splints for my hands and wrists :)</span><br /><span style="font-weight: bold;">I'm so excited at the thought of being able to put my hands in my pockets without subluxing them, or using my fingers without them doing nothing but bend.</span><br /><a style="font-weight: bold;" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgST8lQAPaM_v4uMKwfqEuUqf-Ajkgws_SdmieQIggMrin_3HP1OO6kftiMd90JmmElx-iC-KC7TNekVJX_7pKb_pLOI3E_-ETrUQxtyWhlPsGxkZmeTHYziZoI6eVfep7dz4Pcji7sd1M/s1600/wrist+splint+%2523+1+001.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgST8lQAPaM_v4uMKwfqEuUqf-Ajkgws_SdmieQIggMrin_3HP1OO6kftiMd90JmmElx-iC-KC7TNekVJX_7pKb_pLOI3E_-ETrUQxtyWhlPsGxkZmeTHYziZoI6eVfep7dz4Pcji7sd1M/s320/wrist+splint+%2523+1+001.JPG" alt="" id="BLOGGER_PHOTO_ID_5582650139169436706" border="0" /></a><span style="font-weight: bold;">I had to take a Sharpie marker to them, there's no way I can wear plain splints and braces. I put on the words that keep me going. It's derived from a Japanese proverb that says " Fall seven times, stand up eight."</span><br /><br /><span style="font-weight: bold;">Being sick again has given me a lot of time to process. I've needed to do it, and have been avoiding it like the plague. I haven't really thought a lot about my last year, maybe it's because everything has happened so fast, there hasn't been time to think. Now it's all hitting me like a ton of bricks and I'm trying to face it, but it's not fun. In the last year, I've lost my jobs from being sick and too bendable. I've ended up with AFO's, a wheel-chair, a feeding-tube, a pump and splints. I've spent the last 10 months mostly in bed and have had to face a lot of really scary things. Most of which, I don't ever talk about. I've lost friends who don't understand how bad EDS and dysautonomia can be, or who can't deal with me being this way. I get looks of pity or sadness, which drives me crazy. I don't think when I get looked at that way, the person doing it realizes how much that shit hurts, and it's the last thing someone in my shoes needs. None of that stuff does much good for building trust either.<br /><br />I've pretty much lost everything that I loved and lived for. Nothing is simple anymore, I can't do anything without thinking about the consequences my body will dish out. I have to prepare for it all. My entire life has been consumed by this, and it's not a choice. </span><br /><br /><span style="font-weight: bold;">I do have the choice to make something of it though. That's where I'm trying to focus all of my energy. I've had to remove and protect myself from the things that bring me down, and really evaluate how I want to live. I have learned to accept that I will always have EDS and will always be sick. Nobody else is stuck in this body, or can fully understand the gravity of what it's like unless they're bendy, or I've trusted them enough to tell them. Even though I've lost pretty much everything, I'm happier now that I have ever been. I've learned what I need and don't need in life, and found my niche. I also found out for myself, where I fit within the grand scheme of things. This ride has been the furthest thing from easy, at times seemed impossible. The universe has always come through with truly incredible things. No matter how small or insignificant they may seem to everyone else, they are what keeps me going.</span><br /><br /><span style="font-weight: bold;">I am finally at peace, and I wouldn't trade it for the world. </span><br /><span style="font-size:180%;"><br /></span><div style="text-align: center;"><span style="font-size:180%;"><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;">"I like nonsense, it wakes up the brain-cells."</span></span><br /><span style="font-size:180%;"><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;"><span style="font-size:78%;">(Dr.Seuss)</span></span></span><br /><span style="font-size:180%;"><span style="color: rgb(255, 255, 153); font-weight: bold; font-style: italic;"></span></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0tag:blogger.com,1999:blog-3251345393759638797.post-84797736889909728802011-02-27T07:34:00.000-08:002011-02-27T17:08:32.258-08:00I might just have my life back...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvzG8jCazC0tu1Y4SvOouaJgoEV8VBj47RtjtxrVjvBtDqmKkfixFSydZbIGmltvgIU58YIlcMxwqCWiWT01MeCzuj8832cpjbd_wMysgERi23VOafQZltdgFrVg9jXHUHEb6SjyhSpzs/s1600/181508_10150098182256870_513361869_6057052_1871999_n.jpg"><br /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">I haven't written much about Jerome (my J-tube) and being hooked up to a pump for a while now. I'm going to knock on wood and say that I've set a new record for myself. I haven't been near an ER for 1.5 months. How awesome is that?!</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I'm hooked up to a Kangaroo-Joey pump for 9-18 hours everyday. I love my pump, it goes in a little back-pack and I can turn it up-side down and shake it without setting off any alarms. It's totally worth the huge price-tag. The picture makes it look big, but it's small, I promise. </span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfyBppRiAHtj43ErbMsVMMtc0ojOifke_8AgveeALLCXqfLHBeOJm5mJ4Vf7Ap5GoJwARQi_WdcORzweh7Aq2fbeNhig_OA1uBfQ0SKHfqdtLpdZowKgTgk0CnRSdt-TTmqE8PcFDntHM/s1600/Picture0118.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfyBppRiAHtj43ErbMsVMMtc0ojOifke_8AgveeALLCXqfLHBeOJm5mJ4Vf7Ap5GoJwARQi_WdcORzweh7Aq2fbeNhig_OA1uBfQ0SKHfqdtLpdZowKgTgk0CnRSdt-TTmqE8PcFDntHM/s320/Picture0118.jpg" alt="" id="BLOGGER_PHOTO_ID_5578438450973459810" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">It sounds like a pretty big range, but it all depends on what my body is doing that day. I need about 200-300mls/hr of fluids concoction (water, electrolyte mix and salt) to be able to function. Any less will make me crash and I get all dysautonomia-y, any more than that is too much for my body and I'll start refluxing and barfing. Yes, that's suppose to be physiologically impossible, but I have EDS and the sphincters that keep everything down are pretty much shot.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Since figuring this all out and keeping on top of it, I'm feeling so much better. I will even dare to say that I'm feeling good. We know that hydration and salt are key to living with dysautonomia, and with my pump I have it all the time. Before,when I'd have to go to the ER, I'd feel so much better after getting enough fluids and I'd be symptom-free for a couple of days. Now it's like having IV fluids all the time. The hardest part of actually getting fluids concoction in, is when I get up in the morning and need to be hooked up right away. The problem is because I'm not hooked up at night, I feel gross in the morning and have to wait until my body has had enough fluids concoction before I can function. If I wait around too long before I hook myself up, then I'll feel worse and go back to where I started before life with a pump, which was horrible.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I still have the odd days when I feel gross, but it's been rare and not nearly as intense. Now I have energy, and I don't have most of the symptoms. I still reflux, sometimes like crazy but it's not nearly as bad. I can get up and go through the day without needing to lay down and rest as much. I still get tired,but it's not like when it would take me 4 hours just to have a shower and get dressed. I'm starting to get hungry again, which is sounds so weird. I'll still go 24hrs without feeling the need to eat, but now I want to eat and am starting to enjoy food again. Before, I'd look at a plate of food and want to cry, the thought of eating repulsed me. Last week I went to my parents house and had two servings of dinner. I didn't notice until there were comments about how I was eating again, it was the most I'd had during a meal in about a year. I don't really have the adrenaline rushes and insomnia until 5am anymore, I fall asleep around 1am and say asleep through the night. I'm not dizzy all the time anymore, and love the fact that I can lay down without feeling like the room is spinning. Dysphagia and choking aren't as bad either. I still choke on everything but it's less frequent and swallowing is a bit easier (when the hormones aren't crazy). I have replaced the brain-fog with an attention span, and can carry on a conversation and think again. The tachycardia, palpitations, chest-pains and low blood-pressure are still kicking around but like everything else, not nearly as bad. I can get up from sitting with only feeling a bit dizzy and seeing stars, instead of blacking out and having the room spin. I essentially don't feel like a zombie anymore and it's wonderful.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I have even dared to do my own little experiments on myself. Looking back, I've had all the dysautonomia symptoms going on for years, most of it starting when EDS started. Keeping in mind it was on a much smaller scale and didn't affect me nearly as bad. I took myself off the supplements that were helping with the insomnia, ADHD and anxiety. Interestingly enough, I've been feeling fine without them. Part of me is wondering if I've had dysautonomia all along, with it being just a lot more mild, and presenting as something else. I'm still taking all my other supplements but the whole thing is pretty amazing if you ask me.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Everyone keeps telling me how much better I'm looking, so I know it's not just me. The best is when people tell me that I've got the spark back in my eyes and I seem so much happier. I am a lot happier, I don't feel like a zombie anymore...For the first time in about 10 months I'm starting to live again. My existence isn't from my bed, and I can kind of do things like a normal person again. I'm still processing the whole thing, and have come to realize that I've pretty-much lost a year. When the dysautonomia mess started, my life stopped but the rest of the world didn't. Now that I know what I need, and what works I'm looking forward to playing catch-up and joining the rest of the world. I'm really hoping this summer will be spent outside instead of in bed.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I get a lot of flack for how I've chosen to live with EDS and dysautonomia, but it's the right choice for me. We all have to find our own way of living with this and do what works for us. Getting the j-tube, using natural and Chinese medicine lets me be able to live my best possible life. I think the fact that I'm not on any medication at all and thriving (considering) with these conditions is a testament to how vital this approach is for me.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">What goes into my fluids concoction?</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">- Ground up sea-salt</span><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">- Natural electrolyte mix </span><a style="font-weight: bold; color: rgb(255, 255, 255);" href="http://www.eletewater.com/">http://www.eletewater.com/</a><span style="text-decoration: underline; font-weight: bold; color: rgb(51, 51, 51);"><br /></span><span style="font-weight: bold; color: rgb(51, 51, 51);">- Just plain tap water</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">I also eat potato chips every day. They're gluten-free, contains carbs and salt, which is key.</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">It's nice to finally have something work out when everything else has been hell. Just recently, I put myself out to the universe and started asking for help. Since then, there have been some really incredible, humbling things taking place and I'm so thankful for it all. There are no words to describe it...</span><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">One cool thing that happened, is a friend bought me a package for 5 massage & hydrotherapy treatments. She knows that floating in warm water is the best thing for pain relief and one of my favourite things. The heat helps relax my muscles and sore joints, and floating means there's no gravity....when there's no gravity, I don't dislocate or sublux anything and my body stays together. When I'm floating and am not in any pain, I completely relax, and think about nothing. It's essentially like meditation for me. I have other bendy friends who speak the same about hot-tubs and floating...We're going to start our own religion where all you have to do is float. Mmmmmmm</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmAtrUeVPZH2QbWk9uGhIrvWGPL8LW3SXnZY7oiaY4l3ncJfTxNSw_3j18G1_VoW5jlidsutfpuAPQ5dawNfb2-XzCttMXWePVwhV5WZJuGSpcfOsZt4Vyz7YxqlKGUoo4FHeiRh76dVo/s1600/180594_10150098180331870_513361869_6057023_257187_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmAtrUeVPZH2QbWk9uGhIrvWGPL8LW3SXnZY7oiaY4l3ncJfTxNSw_3j18G1_VoW5jlidsutfpuAPQ5dawNfb2-XzCttMXWePVwhV5WZJuGSpcfOsZt4Vyz7YxqlKGUoo4FHeiRh76dVo/s320/180594_10150098180331870_513361869_6057023_257187_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5578436489308319554" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">Want to float too? Anyone can join our religion...</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvzG8jCazC0tu1Y4SvOouaJgoEV8VBj47RtjtxrVjvBtDqmKkfixFSydZbIGmltvgIU58YIlcMxwqCWiWT01MeCzuj8832cpjbd_wMysgERi23VOafQZltdgFrVg9jXHUHEb6SjyhSpzs/s1600/181508_10150098182256870_513361869_6057052_1871999_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvzG8jCazC0tu1Y4SvOouaJgoEV8VBj47RtjtxrVjvBtDqmKkfixFSydZbIGmltvgIU58YIlcMxwqCWiWT01MeCzuj8832cpjbd_wMysgERi23VOafQZltdgFrVg9jXHUHEb6SjyhSpzs/s320/181508_10150098182256870_513361869_6057052_1871999_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5578436490431685410" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">I was so relaxed and off in Nakki-land, I had no idea anyone took this until I saw it posted on Facebook.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjG4DvKQn1MbRVS8YOTysAJDzcKNsZn2Xhu7FiRk9AyPGDTBjeKXglDfANw8oAlOxmz1d415yOpwivJZJ8QXvRiqxkoe1-RBmUwWHCvCJLAusoovsgvjHgYeq9J7uY7D88l4e8i3Xq-aE/s1600/179809_10150098182581870_513361869_6057061_8077601_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 231px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjG4DvKQn1MbRVS8YOTysAJDzcKNsZn2Xhu7FiRk9AyPGDTBjeKXglDfANw8oAlOxmz1d415yOpwivJZJ8QXvRiqxkoe1-RBmUwWHCvCJLAusoovsgvjHgYeq9J7uY7D88l4e8i3Xq-aE/s320/179809_10150098182581870_513361869_6057061_8077601_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5578436499586013266" border="0" /></a><span style="font-weight: bold; color: rgb(51, 51, 51);">If only I could find a way to avoid tape-rash all together. One day....</span><br /><br /><span style="color: rgb(51, 51, 51); font-weight: bold;">Here are some video's I made for another project and to raise more EDS and dysautonomia awareness/understanding.</span><br /><br /><br /><iframe src="http://www.youtube.com/embed/NdqcL3tFExQ?fs=1" allowfullscreen="" width="425" frameborder="0" height="344">&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;</iframe><br /><br /><iframe src="http://www.youtube.com/embed/bM0l3Us2aQc?fs=1" allowfullscreen="" width="425" frameborder="0" height="344"></iframe><br /><br /><span style="font-weight: bold; color: rgb(51, 51, 51);">Thank you for reading my crazy rants and other nonsense. I hope it offers encouragement to find what works for you, and gives hope that you'll find your way through all of this. I know I have, and I never thought it would be possible. Keep your chin up, and keep moving forward.</span><br /><br /><div style="text-align: center; color: rgb(255, 255, 153);"><span style="color: rgb(255, 255, 102);font-size:130%;" ><span style="font-weight: bold;">"Creativity is inventing, experimenting, growing, taking risks, breaking rules, making mistakes and having fun"</span></span><br /><span style="font-size:78%;">(</span><span style="font-size:78%;">Mary Lou Cook)</span><br /></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com4tag:blogger.com,1999:blog-3251345393759638797.post-88088748788144029552011-02-09T11:17:00.000-08:002011-02-09T15:23:41.220-08:00When you're neglected by a gastroenterologist...<span style="font-weight: bold;">I'm opening up a can of proverbial whoop-ass and writing this for the world to see. This is what happens as a result of being neglected too many times by a gastroenterologist (who will remain nameless right now). Let's' also not forget his unprofessional remarks. </span><br /><br /><span style="font-weight: bold;">I know that doctor's offices, especially specialists' offices and ER's are very busy places. I also know that I have really rare and pretty much un-heard of conditions. I'm all of my doctors first patient with Ehlers Danlos Syndrome and Dysautonomia. Because of the awesomeness of these two invisible conditions, they're really hard to diagnose and treat. I get that, all of it. </span><br /><br /><span style="font-weight: bold;">What I don't understand is how these people can just brush off patients and their symptoms, even when the patient provides information (also knows more about it than the doctors) and evidence that things aren't right. </span><br /><br /><span style="font-weight: bold;">Sadly I'm used to fighting with doctors. It has only happened a few times where I actually get listened to and not immediately dismissed. The only two people who've listened without a fight, and who are doing an incredible job advocating for me are: Awesome GP and the inpatient nutritionist at Mt.Sinai. </span><br /><br /><span style="font-weight: bold;">If you've been reading, I guess it's not news that I recently spent 6 days inpatient because of dysautonomia and J-tube issues. My gastroenterologist knew what was going on but didn't do anything. Awesome GP wanted me admitted to get it all sorted but when I went to the ER with a letter from him, I was sent home and spent the weekend getting worse. That case of neglect ended with me back in the ER on the Monday where I ended up being admitted after crashing pretty bad. You can read about it here: <a style="color: rgb(255, 255, 153);" href="http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html">http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html</a><span style="text-decoration: underline; color: rgb(255, 255, 153);"></span></span><span style="text-decoration: underline; color: rgb(255, 255, 153);"><span style="font-weight: bold;"></span></span><br /><br /><span style="font-weight: bold;">After getting everything sorted part of my discharge plan was to follow-up with my gastroenterologist. I called and asked to book an appointment, where I was told that he felt no need to see me. I called back the following week and explained that it was part of my discharge plan, and that I also needed to get my tube changed and needed the go-ahead from him. The receptionist called back and said that he still didn't feel the need to see me, and that my tube was in the right place and didn't need to be changed. </span><br /><br /><span style="font-weight: bold;">It amazes me how he could use his x-ray vision and know this without even looking at me. No wonder he's doctor, he's got super-powers! Funny enough, every single doctor, tech and nurse I saw since getting my J-tube put in 3 months ago, said that it should get changed every 3ish months. A lot of people have looked at my tube since I've had 3 ER visits, a bunch of tests and a million appointments in that time. They all said the same thing....get it changed every 3ish months. This gastroenterologist of mine thinks that the tube can stay in for 5-6years. So, that's why he wouldn't put the papers through so I could get it changed. </span><br /><br /><span style="font-weight: bold;">Let's not forget that I have Ehlers Danlos and am at a risk for a lot of things. Part of my condition includes poor wound healing, issues with bleeding and anything else crazy. I am well aware of the fact that I'm his first EDS patient with a tube. I also know my shit about this condition and have had to advocate for myself every step of the way for the last 13 years. </span><br /><br /><span style="font-weight: bold;">Below is some writing from past posts about the difficulties and neglect I've encountered with this doctor.</span><br /><br /><span style="font-weight: bold;">This is when I finally convinced him that a tube would be a good idea </span><br /><span style="color: rgb(0, 0, 0); font-style: italic;">"His first response was this: "Well putting a g-tube in you will be difficult because you're fat, to put it nicely". Then I laughed in his face, and listed all of the reasons of why it would be a good idea. I think he got served a piece of humble pie because he agreed to not only do a g-tube, but that a g-j tube would be a better option (because of aspiration and autonomic issues). I think he realized he was not god, when he also said "This is a very strange request, but you have Ehlers Danlos, so it will be a first for me and is very interesting".</span><br /><br /><span style="color: rgb(0, 0, 0); font-style: italic;">He was ready to book the procedure which is normally done in radiology, until I reminded him that people with EDS do not benefit at all from local anesthetics. He forgot (neglected to read over his notes) that when I had the gastroscophy/biopsy done I had to be sedated after 4 attempts with a local anesthetic. So now he's on a wild-goose chase to find a way to get it done under general anesthesia (which is my best friend), with someone who is comfortable dealing with EDS and all of the complexities that come with it. </span><br /><br /><span style="color: rgb(0, 0, 0); font-style: italic;">He's still not convinced that I need to get the gastroscophy done every 6mts despite that it was requested from my geneticist at my last follow-up, and I have a family history of esophageal cancer..."</span><br /><br /><span style="font-style: italic;"><span style="font-style: italic;"><span style="font-weight: bold;"><span style="font-style: italic;">This is from when we were getting the pre-op paper work done, which made things a little complicated because of EDS. </span></span></span><br /></span><span style="color: rgb(51, 51, 51); font-style: italic;"><span style="color: rgb(0, 0, 0);"> "I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!"</span><br /><br /><span style="font-weight: bold; color: rgb(0, 0, 0);"><span style="font-style: italic;">Apparently the paperwork didn't go through because I wasn't on any food restrictions, and it didn't get done under general anesthesia</span></span><br /><span style="color: rgb(0, 0, 0);">"I was still being offered food today, even 10 minutes before the procedure. I didn't end up getting it done with general anesthesia, but instead with sedation and some locals. The techs putting in the tube were nothing but awesome. They read the info I gave them and were more than willing to do what made me comfortable. I could still feel a lot of it, as the locals don't really work on this girl, no matter what. I will say that having your stomach and jejunum poked and cut through feels really gross"</span><br /><br /><span style="font-style: italic;"></span> <span style="font-weight: bold; color: rgb(0, 0, 0);"><span style="font-style: italic;">This was from the post-op follow-up</span> that I had to fight for. He didn't feel the need to see me, despite it being in my discharge plans.</span><br /><span style="color: rgb(0, 0, 0);">"I guess I'll start with the Jerome (gj-tube) drama.</span></span><br /><span style="color: rgb(0, 0, 0); font-style: italic;">Well it got infected, but I got antibiotics straight away and it's cleared up. The GI specialists said it was because A) I am "a little bit chubby". Hey, it's better then last time when I was "fat". What an ass. B) I have EDS. I say we're professional slow-wound healers."<br /><br /></span><span style="color: rgb(0, 0, 0); font-weight: bold;">Today I went to see Awesome GP because gastroenterologist won't take me. Last night I had blood (not a lot) coming from my tube and it was sore. It wasn't because of any abrasions, it was coming from the inside where it's still draining. I have an insanely high pain tolerance, when something hurts it means something is wrong. I spent the night on my back (which hurt the rest of my body) and it was the same this morning. Still bloody and sore, gross I know. Awesome GP put me on antibiotics and sent off the paperwork for another gastroenterologist and to get a tube change at a different hospital. I called this hospital, and they need paperwork from my gastroenterologist. He won't see me, how the hell am I suppose to get the paperwork, never mind a tube change. Are we suppose to forget that with Ehlers Danlos there are issues with tissue break-down, organ ruptures and bleeding? I'm also suppose to be able to trust these people? Yeah right....<br /><br />I'm hoping this post will yield some results in terms of finally being able to get the appropriate care I need, and that others won't have to do the same. What if I were a patient who didn't advocate for myself? I would have ended up dead, no joke. If need be, I will start using the real names of hospitals, doctors and people who have been neglecting their duties as "medical professionals". Maybe the media would be interested in this...<br /><br />My point in all of this long drawn out rant, is that everyone deserves a healthy life. This is the only way we can, so this is what we have to do. We don't expect anyone to know everything, but we really hope, you would be open to learning and being awesome. <br /><br /><br /></span><div style="text-align: center;"><span style="color: rgb(51, 51, 51); font-weight: bold;"><span style="font-size:130%;"><span style="color: rgb(255, 255, 153); font-style: italic;">"No one can make you feel inferior without your consent"</span></span><br /></span><span style="font-size:78%;"><span style="color: rgb(51, 51, 51);"><span style="color: rgb(255, 255, 153);">(Elanor Rosevelt)</span></span></span><br /><span style="color: rgb(51, 51, 51); font-weight: bold;"></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com3tag:blogger.com,1999:blog-3251345393759638797.post-72919238437551508602011-01-29T09:29:00.000-08:002011-01-29T21:49:31.050-08:00The Importance of Fun<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfE3ShD1BBDCuKhyphenhyphen45gIOScgA53chtwh9wFpawPE1TY_W0WhqSdrh_WJch5DVBSBd_jYC8V3_B-kxcxiWCii9IZBD8RNZ4TrTHJsvyHNqf0qzeqt-hLJovsGEMEvpEWLuGOtzV0zTmOSA/s1600/Picture0072.jpg"><br /></a><br /><span style="font-weight: bold;">Sometimes you just have to do things because you can, and it's fun.</span><br /><br /><span style="font-weight: bold;">Things like...</span><br /><span style="font-weight: bold;">- Puddle jumping</span><br /><span style="font-weight: bold;">- Blowing bubbles</span><br /><span style="font-weight: bold;">- Art</span><br /><span style="font-weight: bold;">- Breaking plates for stress relief</span><br /><span style="font-weight: bold;">- Singing at the top of your lungs</span><br /><span style="font-weight: bold;">- Having food fights</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfE3ShD1BBDCuKhyphenhyphen45gIOScgA53chtwh9wFpawPE1TY_W0WhqSdrh_WJch5DVBSBd_jYC8V3_B-kxcxiWCii9IZBD8RNZ4TrTHJsvyHNqf0qzeqt-hLJovsGEMEvpEWLuGOtzV0zTmOSA/s1600/Picture0072.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfE3ShD1BBDCuKhyphenhyphen45gIOScgA53chtwh9wFpawPE1TY_W0WhqSdrh_WJch5DVBSBd_jYC8V3_B-kxcxiWCii9IZBD8RNZ4TrTHJsvyHNqf0qzeqt-hLJovsGEMEvpEWLuGOtzV0zTmOSA/s320/Picture0072.jpg" alt="" id="BLOGGER_PHOTO_ID_5567851315643852402" border="0" /></a><span style="font-weight: bold;">-Turning finger-painting into face-painting and laughing about it until you cry.</span><br /><span style="font-weight: bold;"><br /><br />Another item on that list for some, is laughing at the otherwise hard things in life. It's what keeps us sane, and allows us to have our heads where we like them.</span><br /><br /><span style="font-weight: bold;">I've been playing the avoidance game in terms of emotionally dealing with the whole needing a pump, and how it's going to change things that were not in the game plan. It's starting to catch up to me, and every stupid thing makes me want to cry. I'm not a crier...Most of the time, I choose to laugh. It reminds me to find the positives and roll with the punches.</span><br /><br /><span style="font-weight: bold;">My bendy friends are constantly coming up with some of the most hilarious and brilliant ideas. We all had a good laugh about one of them and decided to make it happen. This little project will hopefully evolve, but for now check this out....</span><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGEVXChEP8Vqw2QleY65R0qrekcdHCVyC9jF1JKvGx9Acwn3EqhbGBaQoXPgL9uHn5qcWioXihvSOPMvTe_-tW7_rAr2y5pTO9I-NOYCGVWylJObgZMMQ8LjpMCOG1GnlQs0LY9zXW83Q/s1600/EDS+gang+sign+10bendysfinal.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 389px; height: 335px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGEVXChEP8Vqw2QleY65R0qrekcdHCVyC9jF1JKvGx9Acwn3EqhbGBaQoXPgL9uHn5qcWioXihvSOPMvTe_-tW7_rAr2y5pTO9I-NOYCGVWylJObgZMMQ8LjpMCOG1GnlQs0LY9zXW83Q/s320/EDS+gang+sign+10bendysfinal.jpg" alt="" id="BLOGGER_PHOTO_ID_5567486655118517106" border="0" /></a><span style="font-weight: bold;">Pretty bad-ass eh?</span><br /><br /><span style="font-weight: bold;">I want to use the same idea for something like this:</span><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE2rQtFxJTskPyuy77CJ9geFjcNpZNmQ755HJBPyMDPX7s7Bbfy7ai37tmF6-6_0Ea0UGK3HOd6dnoyW0NQDSpEzqvyY-c80sUlRTOVJGlkgIEqUGt0AQYd55VOC6DiLOD4SOG4Cm4NVk/s1600/Picture0066.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE2rQtFxJTskPyuy77CJ9geFjcNpZNmQ755HJBPyMDPX7s7Bbfy7ai37tmF6-6_0Ea0UGK3HOd6dnoyW0NQDSpEzqvyY-c80sUlRTOVJGlkgIEqUGt0AQYd55VOC6DiLOD4SOG4Cm4NVk/s320/Picture0066.jpg" alt="" id="BLOGGER_PHOTO_ID_5567486665479525810" border="0" /></a><br /><br /><span style="font-weight: bold;">And just because this has been a popular saying among bendy friends:<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLmm__k1D5-lx0D66DRLJw_hfLQyjvQxggGpMDw7QekQ0U8rfDtdkoZwjy2ViqYfOzOsfNnhyphenhyphen4iTVoxv6mHz9tZAwf738ThiEQetx8Moz6bMVMvSL-3usBmt2RoUDNekpOEY_YRDxXcY/s1600/Picture0055.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLmm__k1D5-lx0D66DRLJw_hfLQyjvQxggGpMDw7QekQ0U8rfDtdkoZwjy2ViqYfOzOsfNnhyphenhyphen4iTVoxv6mHz9tZAwf738ThiEQetx8Moz6bMVMvSL-3usBmt2RoUDNekpOEY_YRDxXcY/s320/Picture0055.jpg" alt="" id="BLOGGER_PHOTO_ID_5567486667136543410" border="0" /></a><span style="color: rgb(51, 51, 51);"><br /><br /></span><span style="font-weight: bold; color: rgb(0, 0, 0);">One of my "best-est" bendy friends Sama posted this, and I think it's brilliant. Funny enough, we were both working on a post about the importance of fun at the same time without knowing it. It just goes to show what happens when minds think a-like. </span><br /><br /><iframe src="http://www.youtube.com/embed/FSZft3QGYIc?fs=1" allowfullscreen="" width="480" frameborder="0" height="295"></iframe><br /><br /><span style="font-size:130%;"><span style="font-weight: bold; font-style: italic; color: rgb(255, 255, 153);"><br /></span></span><div style="text-align: center;"><span style="font-size:130%;"><span style="font-weight: bold; font-style: italic; color: rgb(255, 255, 153);">"Us Zebras rule. Best gang of weirdo's everrrr!", "EDS Represent!", "L.A. Bitches!" "Fo Shizzle!"</span><span style="color: rgb(255, 255, 153);"> </span><span style="color: rgb(255, 255, 153);font-size:78%;" >(Bendy friends)</span></span></div>Nakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.com0