Hello to: Whoever may still be here!
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.
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.
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.
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.
Here is EDS Canada in all of it's glory:http://ehlers-danlossyndromecanada.org/
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.
Please check back soon!!!!
Saturday, March 8, 2014
Sunday, April 22, 2012
The time EDS threw me into the epic pit of doom, and I slowly climed my way out
It's been f.o.r.e.v.e.r. since I've logged on and actually wrote something worth posting. There were a bunch of futile attempts but nothing I felt was worth hitting the "publish" button.
To sum it up, EDS kicked my ass. Royally.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
These pictures are in no particular order, but I've been wanting to share some of them so here we go....
These pictures are in no particular order, but I've been wanting to share some of them so here we go....
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?!
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.
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.
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.
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!!
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.
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.
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!!
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.
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!
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!
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 :Ehlers Danlos Syndrome Ontario (EDSO)
Sunday, September 18, 2011
Jerome and Perry, the tale of a Port-a-cath and a J-tube.
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. 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.
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.
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.
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.
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.
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.
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.
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.
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. 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. 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.
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.
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.
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.
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.
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.
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.
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.
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. 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. 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.
Monday, September 5, 2011
Introducing Perry, my port. On to plan "F" let's hope it works!
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.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.
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!
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...
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.
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.
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.
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.
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.
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.
"I apparently provided 3 hours of entertainment and a sing-a-long during my MRIs. Everything from(S-Jo)
Sunday, August 28, 2011
When EDS kicks everyone's butts!
If you've been wondering what's been happening in EDS land over here, I have 3 big posts in the works.
*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.
*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.
*Our Toronto bendy sista Natalie passed away. She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.
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.
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.
""
(Christie)
*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.
*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.
*Our Toronto bendy sista Natalie passed away. She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.
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.
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.
""
(Christie)
Saturday, July 9, 2011
How do you measure, measure a year....
The adventures our lives can take over the course of a year, never fails to amaze me.
I've been spending a lot of time thinking about how dramatically different my life is now than it was last year.
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.
Little did I know my life was going to change, and it was going to be for the better.
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.
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".
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.
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.
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.
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.
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.
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.
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!!
I've been spending a lot of time thinking about how dramatically different my life is now than it was last year.
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.
Little did I know my life was going to change, and it was going to be for the better.
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.
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".
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.
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.
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.
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.
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.
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.
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!!
Sunday, July 3, 2011
Flippity, floppity. Copy+ paste.
I've got 6 posts that are all on different topics, all half written.
This pretty much sums up the past couple weeks. It's another copy+paste post!
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.
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.
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.
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.
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.
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.
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.
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!!!!
I've started learning Reiki, and practice everyday. Energy work is pretty awesome stuff, I can't wait to see what happens with it.
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....
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...
p.s. I'm glad you had a bath.
Not only does Jack Attack clean up my chip crumbs, he's fine with my didgeridoo and loves the
hammock. It's tough being Jack....
My name is Jack-Jack.
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.
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?
This pretty much sums up the past couple weeks. It's another copy+paste post!
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.
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.
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.
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.
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.
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.
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.
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!!!!
I've started learning Reiki, and practice everyday. Energy work is pretty awesome stuff, I can't wait to see what happens with it.
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....
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...p.s. I'm glad you had a bath.
Not only does Jack Attack clean up my chip crumbs, he's fine with my didgeridoo and loves thehammock. It's tough being Jack....
My name is Jack-Jack.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.
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?
Subscribe to:
Posts (Atom)
