Flexibility is over-rated, creativity is ingenious

Jerome and Perry, the tale of a Port-a-cath and a J-tube.

2011-09-18T12:20:00.000-07:00

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.

"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"

"I am working on my relationship with my couch. It's important to spend quality time together."

"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"

"I like my murse... He's taking good care of me." (In reference to her husband)

Introducing Perry, my port. On to plan "F" let's hope it works!

2011-09-05T23:52:00.000-07:00

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 fromKid 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)."

"So... would the MRI pics of the inside of my brain be considered zombie porn...?"

(S-Jo)

When EDS kicks everyone's butts!

2011-08-28T19:36:00.001-07:00

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.

"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 ♥ "

(Christie)

How do you measure, measure a year....

2011-07-09T21:26:00.000-07:00

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!!

"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."

(Dr.Seuss)

Flippity, floppity. Copy+ paste.

2011-07-03T19:12:00.000-07:00

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?

The pain in my......

2011-06-12T20:26:00.000-07:00

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.

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...

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.

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.

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).

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.

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.

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.

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.

I do NOT give the hospitals consent to:
1) Give me medication without informing me what it is, and asking if I want it.
2) Put anything up my ass.

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.

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?
And now I just re-opened the wound, woot! At least this didn't happen in the hospital...

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:

"Dear: EDS, FUCK YOU! YOU FUCKER!!"

Staying at Chateau Sinai again

2011-06-03T16:47:00.000-07:00

Bleh, I'm at Chateau Sinai for the insane reflux stuff.
It got too crazy for me to handle at home and I couldn't deal with it anymore.
I've got a lot to write about, so an epic post will be coming soon.

In the mean time you can check this out....

"Do you want me to bust you out tomorrow at lunch-time?"

When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.

2011-05-29T08:35:00.000-07:00

As you can tell, it's been a blast and I've had the time of my life.

With the Zofran I only ended up with all the side effects, and no relief.
It messed up my skin and turned me into a bleeder, everything seemed so fragile.
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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

"Jerome just probably needs some more vodka."
(Bendy friend Tiffany)

It's a EDS Zebra Sleep-Over Party!

2011-05-25T14:26:00.000-07:00

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.

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.

She also made grab-bags filled with the perfect items for a zebra princesses spa.

The princesses were served the most delectable gluten-free cupcakes, they all had at least three.

Candy was also on the menu, commonly known as princess fuel.

There was talk of bacon flavored cupcakes and lip-gloss, all essential in a princesses day.

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 !!!

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.

Guess which princess came out of nowhere and beat everyone. She's really a ninja in disguise.

Tiara's are a MUST at royal balls such as these.

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. (Read the label on the bottle)

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.

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!

Bendy princesses firmly believe that hysterical laughter can fix anything, or at least make pain more manageable.

Then it was time to play a game called: Is This Normal?!
Princesses Nakki and Chuckles are definitely royalty as their feet were starting to turn a nice shade of purple. Blood pooling is awesome!!

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.

She wanted to fill the cupcake bling with bacon grease so it could be lip-gloss.

No longer a princess, but instead the Queen of Bacon!!

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.

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...

If this post doesn't make sense right now, it's because dysautonomia wanted in on the party and I'm super brian-foggy.

"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."
(Dr. Seuss)

Awesome GP does it again!!

2011-05-17T10:30:00.000-07:00

I went to see Awesome GP yesterday to see what he could do,so I could get help with this GI stuff ASAP.

I won't bore you with details, but let's just say I've got it good!!!

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.

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.

Some needles, tubing, canula's, Zofran and fluids! I'm going to look like such a junkie after this...

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.

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.

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.

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 :)

The simple things are really the finer things

2011-05-13T21:38:00.000-07:00

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 ?

Guess what? It's not. Here's why:

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.

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.

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.

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...

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.

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.

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.

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.

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. http://www.mec.ca/Products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524442635436&FOLDER%3C%3Efolder_id=2534374302889522

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.

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.

Then we stopped for some desserts in the sun.

Later we went on our way for more food. We stuffed ourselves silly and had a fantastic time.

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.

This is what I see when I look up, no boring ceiling to stare at.

Nothing better than unwinding at the beach after work.

Happiest feet on the face of the planet.

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.

"Celebrate we will, because life is short but sweet for certain"
(Dave Matthews)

Possible GI relapse fun stuff

2011-05-12T12:53:00.000-07:00

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.

What's not so awesome is my silly GI system.
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 :(

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.

Thanks to EDS this makes things very complicated. Here we go....

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.

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.

So here's what I'm thinking...
Ideally, I'd be admitted again and thrown on IV fluids and TPN
http://en.wikipedia.org/wiki/Total_parenteral_nutrition. 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
http://en.wikipedia.org/wiki/Nissen_fundoplication.
Having to go on TPN while inpatient is common among the bendy community. At least I'd be normal that way.

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.

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.

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.

Waddaya think? Any feedback would be appreciated. Cause' I don't know what else to do.

Otherwise, my body seems to be co-operating and staying together relatively well.

p.s. Food is over-rated.

When OT's do the impossible, the good kind.

2011-05-06T21:35:00.000-07:00

In between the gong-show that has been life with EDS, there have been some pretty incredible victories of sorts.

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.

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?

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.

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.

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.

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.

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!

It doesn't mess with my jaw, supports my head and neck, and is COMFORTABLE. I can also eat with it on.

I will take arm-pit rash any-day over more killer headache/TMJ pain.

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.

This is what happens when it's a beautiful sunny day, and studying isn't all that exciting.

Sunshine and flowers make any day better.

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.

When the world says "Give up", hope whispers "Try it one more time".

The gong show that is EDS, and the exhaustion that comes with it

2011-05-03T21:52:00.000-07:00

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.

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.

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. 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.

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.

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!!

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.

"It's amazing how dramatic our lives are, considering we rarely leave the house"

No medications, really?! A product review, spreadin' the word.

2011-04-17T15:09:00.000-07:00

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.

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.

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............

Skin

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. http://www.martinandpleasance.com/_webapp_67986/Calendula_Herbal_Cream

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.

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. http://www.clefdeschamps.net/en/products/liquid-extracts/salves/83-onguent-calendula

PAIN

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.

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.

Bleeding

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.

Immune

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. http://www.stfrancisherbfarm.com/product.aspx?ID=2&Title=Immune

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. http://www.cleanwelltoday.com

Hydration, blood-pressure and tachycardia

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. http://www.petergillham.com/wp/2010/01/natural-calm-plus-calcium/

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. ttp://new.eletewater.com

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.

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.

"Let food be thy medicine and medicine be thy food."
(Hippocrates)

Dropping the F-bomb

2011-04-16T15:58:00.000-07:00

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.

While there are many times when swearing is inappropriate (especially around little ears), there are definite opportunities where it makes for good expression.

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.

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!

This has been a popular saying among the FB bendy community. I say it all time...

Here are some comments I got on it:
-I hope you do feel better tomorrow! :( EDS sucks!

-I am having a crappy pain day too-and you made me smile-so thanks love!

-Feel better soon! We are matching right now! :p Well me with my vista anyway. :(

-I spy a neck collar?

-You spied right...had an awesome treatment, got dressed, bent over and now I've
funky neck/traps woot! At least the rest of me feels okay.

-Lots of soft hugs, and I couldn't agree more with the message!

-You really shouldn't be so shy, speak up when something ticks you off.

-Fuck You seems to be your favourite expression. Nothing like a swear word to release some frustration. Keep expressing yourself, Nakki

-My shoulder is dangling out of the socket as I write this. Hope you feel better and get that collar off soon! Hugs

-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.

-We call it dedication... others call it mental illness.

- I hav a pretty bad cold mixed with pots...still i Send u a few spoons my dear!

-Tomorrow........... ♥ Your pic sums it up nicely. ♥

-Say it loud! Say it proud!

-keep it coming ! :) That is what I think too!

-my sentiments exactly. love, hugs and nothin' but good Ju Ju coming your way! ♥

Then one of my friends sent this my way: http://www.good.is/post/why-swearing-is-good-for-you/
It made my day :)

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?

You've got to check this video out, it's brilliant!

"Be who you are, and say how you feel because those who mind don't matter, and those who matter don't mind."
(Dr.Seuss)

Coming back to life, it's totally possible.

2011-04-12T20:01:00.000-07:00

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.

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.

Check out the video, it will explain more.

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.

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....

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.

"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."
(Brian Tracy)

There ain't no party like a tattoo tea-party!!!

2011-03-28T23:12:00.000-07:00

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!!!!

That's right, not only were there scones, cucumber sandwiches and clotted creme...There was ink!

After they had enough of being all dainty and lady-like, they busted out the bendy tricks.

Who wouldn't want to ride off into the sunset with these princesses?

Some opted for the temporary option, as those princesses could slay any dragon with their eyes closed.

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.

Princess Giggles wanted to go first. She may look innocent, but don't let that pretty face fool you.

She took those needles like a champ! Especially on the underside of her arm.

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.

Next it was Princess Chuckles' turn. She wanted to try some Emla creme from the apothecary, complete with a frilly white glove.

Yes, a princess can have her tea and a tattoo. She can have it all!

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.

With some new ink, Princess Chuckles can take down any knight in a jousting match.

Especially with her Endless Determination & Strength. Princess Chuckles wanted to bring new meaning to EDS, and do it her way!!

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.

She also had a lovely time talking about those crazy unicorns running amok throughout the kingdom.

Oh my word! Princess Nakki isn't all sugar,spice and everything nice... Just kidding.

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.

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.

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.

The princesses laughed and laughed about breaking things, because they felt like they were the only ones in their kingdom who had such talent.

Princess must always be dainty, and dressed their best.

Until they get tired of it, throw on some pj's and apply more ink.

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?

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!

"And they all lived happily ever after....."

It's all good. New J-tube, adaptive goodness and testing theories.

2011-03-21T21:05:00.000-07:00

* This post contains some potentially gross looking pictures of feeding tube stuff, don't tell me I never warned you*

It's not any news that life has been on the verge of insanity. Wait, that's pretty normal around here.

I guess I'll start with the introduction of Jerome 2.0

Yup, it's a Mic-Key button and I love it.
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.

For the most part, the swelling has gone down, it's stopped bleeding and far less sore. Balloon stomach wasn't so much fun.

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.
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.

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.

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. I decided to cut out anything acid forming and push the alkalines to see what would happen.

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?

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.
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.

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.

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.

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.

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!!

The pieces are easy to take on and off the syringes and make it so much easier to use.

Ta Da!!

Cool eh?! I'll have to get pictures of it in action, so you can get the whole idea.

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.

"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."

(Harriet Tubman)

Doule-Sick burger with a side of fries

2011-03-10T17:29:00.000-08:00

This post doesn't have any specific direction, so I hope you can tolerate my nonsense. Here we go...

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.

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...

Thankfully I've had this stuff, and some treatments to help me along (or do most of the work).
Dear: ER, I've avoided you again...buhahahaha!

I sometimes do stupid things when I'm brain-foggy... Things like this:
Can't a girl just have some tomato soup?! Epic Fail!!!

This week I also got some splints for my hands and wrists :)
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.
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."

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.

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.

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.

I am finally at peace, and I wouldn't trade it for the world.

"I like nonsense, it wakes up the brain-cells."
(Dr.Seuss)

I might just have my life back...

2011-02-27T07:34:00.000-08:00

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?!

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.

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.

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.

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.

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.

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.

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.

What goes into my fluids concoction?
- Ground up sea-salt
- Natural electrolyte mix http://www.eletewater.com/
- Just plain tap water

I also eat potato chips every day. They're gluten-free, contains carbs and salt, which is key.

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...

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

Want to float too? Anyone can join our religion...

I was so relaxed and off in Nakki-land, I had no idea anyone took this until I saw it posted on Facebook.

If only I could find a way to avoid tape-rash all together. One day....

Here are some video's I made for another project and to raise more EDS and dysautonomia awareness/understanding.

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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.

"Creativity is inventing, experimenting, growing, taking risks, breaking rules, making mistakes and having fun"
(Mary Lou Cook)

When you're neglected by a gastroenterologist...

2011-02-09T11:17:00.000-08:00

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.

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.

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.

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.

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: http://flexabilityandcreativity.blogspot.com/2011/01/day-mtsinai-was-joke-still-feeling-ass.html

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.

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.

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.

Below is some writing from past posts about the difficulties and neglect I've encountered with this doctor.

This is when I finally convinced him that a tube would be a good idea
"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".

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.

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..."

This is from when we were getting the pre-op paper work done, which made things a little complicated because of EDS.
"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!"

Apparently the paperwork didn't go through because I wasn't on any food restrictions, and it didn't get done under general anesthesia
"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"

This was from the post-op follow-up that I had to fight for. He didn't feel the need to see me, despite it being in my discharge plans.
"I guess I'll start with the Jerome (gj-tube) drama.
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."

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....

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...

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.

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)

The Importance of Fun

2011-01-29T09:29:00.000-08:00

Sometimes you just have to do things because you can, and it's fun.

Things like...
- Puddle jumping
- Blowing bubbles
- Art
- Breaking plates for stress relief
- Singing at the top of your lungs
- Having food fights

-Turning finger-painting into face-painting and laughing about it until you cry.

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.

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.

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....

Pretty bad-ass eh?

I want to use the same idea for something like this:

And just because this has been a popular saying among bendy friends:

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.

"Us Zebras rule. Best gang of weirdo's everrrr!", "EDS Represent!", "L.A. Bitches!" "Fo Shizzle!" (Bendy friends)

Embracing life and kicking ass! Or at least trying to...

2011-01-19T21:30:00.000-08:00

Wow, the title sounds like some kind of cheesy motivational speaker's infomercial. I thought I'd pass on the most important lessons I've learned on this adventure. I'd like to thank my endorphins, and fluids concoction for this post. I'm feeling particularly good and happy right now so we'll see where this goes. I also hope this doesn't come off as too preachy, because that would be awful.

The first thing someone needs to know about EDS is that living with it is hard. Very hard. It has this amazing power to take everything away from us, and replace it with infinite hardships. It sucks in so many ways, it is painful in so many ways, and exhausting in every possible way. A lot of times, it's all we can do to make it through the day and night, with hope that tomorrow is a better one.

This is where we have a choice. We can choose to lay-down (not literally) and let all the not so good things in life take us over, or we can choose to stay standing and kick ass! I'm sure you know what I almost always choose. This train of thought wasn't always there for me, and there are still sometimes where I will lay down. Although, not for long. It took me a really long time to go through the depression fun that we all go through with this condition or with whatever else happens in life. Slowly, I started to come out of my huge funk and realize that I had a choice. EDS won't ever stop or get better, and there's nothing anyone can do about it. So, I have to accept it for what it is, and make something of it, or suffer more than I have to until I die.

I know when you're going through hell it's next to impossible to see things as a choice. Really, none of us ever choose to go through all that for fun, it happens to us. When life happens, it sucks and we want it to be over ASAP without making anymore compromises. Sadly, that doesn't happen often either. This is where we frequently start freaking out and getting really anxious. Who wouldn't ? Here's the catch, freaking out and worrying won't get us anywhere. So, chill out.

We have no idea what will happen, but we can choose to grab the anxiety, fear, anger, or whatever it is, and change it into something good. We can change it into something we want. It takes a lot of work to be patient, and see opportunities when you're in the thick of it, but it's totally worth it. We also need faith, trust and fairy dust (Peter Pan) . Maybe not all of those, but we need to trust ourselves. Don't ever doubt yourself, you know what's right for you and that's what we should all be striving for. Don't give in to what other people think or say about how you're living your life...it's yours. Unless it's destructive, you know what I'm getting at.

Once you have chilled out, having been patient enough to see opportunities present themselves, and maybe, found that something in there that's right for you; then, there's one last choice to make... Are you going to go for it? It's a simple yes/no question, but not so simple when it's something crazy and big. If it feels right to you, then it should be a yes. If it's a no, maybe put it on the back-burner and go back to the drawing board. But, this is very important...don't let it go, just put it away because you might need it later. So, back to the yes part... If you're feeling good about it, and are getting over-whelmed at what could be a potentially huge under-taking, chill out. Break it down into as many little bits as you need, and check things off the list as you go. Remember, keep your eye on the prize!

If your original game plan doesn't work out, make a new one. Who says you've got to stop working at it? It just means you need to find a new way to do it, that's all. Here's where you probably want to punch me in the face. I'd want to punch myself in the face too, if I didn't know that finding a new way has been my driving force in this mess we call life. What you're dealing with may be the hardest thing on earth for you, and it would feel really awful if your new game plan didn't work. There's nothing like finally finding something that could work, getting up the courage and motivation to do it, and it blows up in your face. It's awesome. No, it totally sucks!

But when it comes down to it, there's still simplicity in it all. It didn't work, are you doing to do something about it, or lay down ? You could lay down for a little bit, get the energy to re-group, and start again. Sometimes that's exactly what we need, so don't be afraid to do it.

I should eat Reeces' cups every time I write a post, I'm on a roll...Chocolate and peanut-butter is one of the best combinations ever! The choking is so worth it.

Ahem...back to the post. After you've gotten over your latest plan not working, it's important to not regret, but learn from it and grow. We can't change anything about the past, but we can learn from it, make a new plan and use the whole experience to help us grow. Don't be afraid to get creative, because it's often where we find the thing that works. Corny, I know. When this happens, I like to tell myself that I'm acquiring wisdom. Sometimes it's convincing. Repeat this entire cycle until you find what works for you. It could take anywhere from 1-100 attempts, and along the way you will surprise yourself.

When you've finally found what works for you, you will look back and either laugh, cry or wonder how you made it through. My best advise for this, would be to take a deep breath, be thankful and let your confidence grow because you will undoubtedly go through this all over again, a lot.

The most important thing to remember is to always have fun and find the positives. Fun is very important and so over-looked. Every single one of us has to navigate our way through this world, which sadly is filled with negativity and repression. Really, who doesn't like having fun ? Who said when we grew up, that it all had to stop? Nobody...society tells us that. When we have fun, we're allowed to be ourselves, and find some enjoyment in a time that is really difficult and heaven forbid, it releases endorphins and we get a dose of much needed happy. So, do whatever it is that turns your crank. For me, it can be anything from finger-painting, to a night of recklessness with friends. Singing at the top of your lungs is always a good one too. Who doesn't like doing that?

As for finding the positives, it is vital to your survival. Yes, I said vital. There's nothing worse than feeling like the world has ended and there's nothing left. Did you know, that once you scratch the surface of finding the good things, you will find a lot ? There's always something good in the hard things life throws at us, it's just cleverly disguised as what we call hard work. Choosing to find the good things isn't always easy, but once we've grasped it, we have hope and a renewed confidence that in time, we'll find a way and figure it out. Even the smallest, most silly sounding positive thing counts. These little positives add up and all count for something far greater than any negativity.

Finally, know that once you've found what works for you, you don't need permission to be awesome at it. Be yourself and you will see the awesomeness that's in you just waiting to get out. We all have it in us. Take your choices in life and make them yours. Hold yourself accountable for your decisions knowing that it was you who made the choices. It's going to be you who makes things turn out the way you want when presented with what we'll call opportunities. We can't choose what happens in life, but we can choose to make something of it, and kick ass!

"Happiness is not about what happens to you, but how you choose to respond to what happens. That's why it's called happiness, not happenness. Though, it could always be called hope-ness. You must always leave room for hope that all happened for a good cause."
(How to be Happy Dammit!)

Feeding pumps, the bane of my existence...

2011-01-19T10:57:00.000-08:00

I used to say that any kind of tape that held my body together was the bane of my existence, not anymore....It's the Kangaroo pump. At the hospital, we worked it out that I'd need to be hooked up for about 12-14 hours during the day. I managed to find a way to get it down to 9 hours, but it's a huge pain in the butt. I'm trying to get enough money together, so I can get a portable one and be able to live almost normally-ish.

One of the doctors at the hospital fed me the classic line "You'll just have to find a way to adapt your life to it." Yeah, if she only knew that I'm constantly giving things up, and having to adapt to live with a body like this. It's exhausting in every possible way, and this girl never really cries...That day, I was a wreck. Every.stupid.thing.made.me.cry. I'm pretty sure it was from the combination of being sick for so long, not being able to eat anything they gave me, having really bad cabin fever, crazy hormones and the obvious; being wrapping my head around life with a pump. It's amazing that if you phrase something differently, it won't seem as though the world has ended. I think she could have used "You'll have to find a way to adapt it to your life." Cause' I'll be damned if I'm going to adapt my life to a machine...

When I got home, I realized that not only would I have to give up most of the spontanatiety I had (not that there was much) but I'd have to give up more....It seems rather silly, and petty but I realized that with the pump, I'd have to give up wearing 1 piece dresses. Not a big deal, I know. But it's one more thing that's been taken off the already tiny, still shrinking "Can do" list. I guess the biggest thing that's been knocked off that list has been my almost inability to really eat. I love food, there's no way around it. When you can't chew properly, choke and reflux like it's nobody's business, food stops being your friend. I mostly consume carbs, which is awesome to be able to say,but I miss everything else. Not being a picky eater does have it's disadvantages when you can't eat, and are willing to try anything at least once. Giving things up means loss of control over my body and most things in my life. I know it's unrealistic to be able to control such things, but to have a sense of power over your body is always nice.

I'm trying to use the pump as much as possible but I really hate it. The constant humming and alarms going off isn't healthy for anyone's sanity. So I'm still kicking it old school, and using gravity to get what I need. When it's not enough , I feel a bit symptomatic of the usual dysautonomia, but I can't do the full 9hrs yet. I started this post without having enough fluids in me. I know this because I felt gross and as I've been editing this post, my writing has been atrocious. I was writing in both first and third person, had awful grammar and huge chunks of it were nonsensical. Now that I've been pumping fluids into me, I'm feeling much more human and almost good. Funny how that works.

Today was a small victory of sorts as I was at Awesome GP's, and hooked up to the pump there. I also managed to take it on the subway with me, still hooked up. I only set of the alarm a hundred times, but hopefully I will perfect it, and have it become my new normal. Luckily, it's been fine at work and Monkey thinks it's the greatest thing ever. He was always eager to help put "food" through Jerome when I was using the syringes, so a machine is even more exciting in his eyes. What science minded kid doesn't like buttons, tubing and pumps that connect to a bionic-like intestine ?

Awesome GP brought up a very good point today, he wanted to know what the hospital had as a back-up plan if using the pump became ineffective. There is no plan, so this pump thing better work. I'm also not willing to give anything else up or spend more time in the hospital. One can wish right ?

The one constant in all of this mess has been the incredible support and juju coming from friends. I was lucky enough to have at least two visitors each day, friends bringing me food that I wanted to eat and things to keep me occupied & happy. And, I had a friend offer to help me find and make tube/pump friendly dresses. What more could a girl need in life? I am very thankful.

Before I forget, I got accepted to school and will be starting shortly :)
That news came while I was in the hospital, it was nice to have something to work towards. As I have to come to realize the universe has my back; anytime one door had closed and something had to be given up, an even better thing came along. It's not ever what I had envisioned, but there has always been a workable or brilliant solution with it all. These things just don't always appear, they are a result of hard work and choosing to find a way. Plan "C" is in full force, I'm taking a huge leap of faith, but am hell bent on making it happen my way. That's plan "C" for work and schooling. I'm on plan "E" for staying out of the hospital....Just like I said, not what I had ever envisioned, but sometimes just as awesome. More to come on that later.

When Monkey came to visit, my sanity was restored for a while. Nothin' like drawing roosters with jet-packs and green mo-hawks, sword fights with pool-noodles and testing the mechanics of the bed 50 million times to get some fun in an otherwise yucky situation. Oh, and another 50 million questions about how an IV pump works.

This is how you bling-up an IV pump with juju. Notice the amount of fluids I was getting, 100ml/hr...that was before I was getting enough, and at my sickest...So glad they listened and gave me more.

When you're bored out of your tree, and can't do much of anything..."Dear: Jerome, WTF is going on with you?! Smarten up!"

That's right, everyone had to read this before they really even spoke to me. Then they got a lollipop after they complied :) Not only was there more EDS awareness out there, I created lollipop addicts and am proud of it.

It was so nice to be able to stick my nose in my favourite flowers, from a fantastic person, take a big-giant sniff and forget I was in a hospital for a while. The acu-ball helps with so many different kinds of pain. The Buddha book helped me put my head back where I like it when things got crazy.

1.5 weeks later, still lookin' like a junkie. I was pretty dehydrated when I was admitted. It took them 6 attempts to find a suitable vein that wasn't on a joint to get an IV in. They were awesome about it, and wouldn't poke me more than two times before getting someone else to try.

My latest invention in the fight with dysautonomia. That night, I had enough of dealing with pumps and refused to have it going in my little sanctuary. I wanted to read in my bed, without any noise coming from medical equipment. So I made use of the stuff that could no longer be used for their intended purpose, and got to read in peace and get hydrated at the same time.

"If you're going through hell, keep going." (Winston Churchill)

A kangaroo and plan "E" to stay out of the hospital

2011-01-17T11:07:00.000-08:00

So I'm home from Chateau Sinai, after being discharged yesterday afternoon. 6 days was more than enough for this girl.
We have a new game plan, and I'm still working on wrapping my head around it.
Jerome, or rather my jejunum can't handle a lot of anything at one time, so I'm the lucky winner of a pump that needs to be attached to me for 9hrs-ish/day.

This is how it's going to happen:
Fluids concoction, approx. 400-500mls/hour to cover 4000ml/4L. Consisting of: sea-salt, magnesium (tricks of the trade) and just plain tap water.
Jerome will get fed 60mls of the Vega mix very slowly through a syringe after every 1L of fluids mix. ( Vega,60ml/1L fluid concoction x's 3-4)
I've "lucked out" in that a lot of people with J tubes are on a pump for up to 24hrs.
The Vega mix is too gritty to go through the pump, and I refuse to use any of those nasty-chemical filled tube feeds, so it's through a syringe.

I don't want it hooked up at night because I move so much, pull on tubes and really don't want to deal with having to re-fill the bags, needing to pee like crazy and beeping alarms in the middle of the night. I need as much sleep as I can get, and good sleep is vital.

By doing it this way, I shouldn't have nearly as intense or frequent dysautonomia symptoms and will continually be hydrated with everything good. This also has huge potential to make recovery from hang-overs much easier.

It's essentially the same amount of stuff I was getting before, but now through a pump. I'm still eating about 1-2 meals in a day and drinking about 2L of water, or at least trying to.

I enlisted the help of some bendy friends, and found an awesome portable pump, and got a hilarious demonstration on how to use it,I'll hopefully be getting it soon. Dear:Bendy friends and Skype at stupid o'clock in the morning, I love you. Nobody at the hospital or home-care believed me that portable pumps existed until I busted out the info. the next morning. Buhahahahaha.

It's a Kangaroo pump, the Joey....
http://www.dhphomedelivery.com/productcart/pc/viewPrd.asp?idcategory=42&idproduct=562

It's an expensive piece of machine, and I'd rather spend the money on something more fun, but that's the way it is. For now, as part of my discharge plan, they set up home-care to make sure everything's working properly and providing the same pump/supplies that were in the hospital. I got it today, and have used it for 1L. We are not friends yet. I'm trying to get as much as I can through with the gravity feeds and drinking. I should really be hooked up more, but I need a break from the beeping and humming of machines. My little one will be much quieter, easier to use and far less of a pain the ass.

Having to go this route totally sucks, and I hate it, but there's not choice other than to kick ass ass at it. It's a good thing Jerome can still have vodka :)

Dear: Chateau Mt.Sinai 14th floor nurses and GI team,

2011-01-12T18:59:00.000-08:00

Just so you know, you were fantastic and I really appreciate it.

Thank you for all of these things.

1) Taking time to learn about EDS in all of it's glory.
2) Joking around with me about it.
3) Being patient with my crazy body.
4) Listening to me.
5) Making good things happen.
6) Bringing me big cups of apple juice with lots of ice in it.
7) Using paper-tape.
8) Being gentle with my body.
9) Making me comfortable as possible.
10) Singing in the hallways.
11) Stopping in to say hi and have a lollipop.
12) Letting me be independent as possible.
13) Being open-minded.
14) Being compassionate.
15) Seeing me as me, and not just the girl with EDS.
16) Letting me see some of you, and not just the staff.
17) Speaking up for me.
18) Giving me space to hate the world when I needed it.
19) Letting me sleep in, mmmmmmmm sleep.
20) Bringing me 50 million blankets so I could hold my body together.
21) Helping whenever possible, even with my stubborness.
22) Respecting my decisions.
23) Teaching me.
24) Sending juju.
25) Being ninjas.

P.S. Thank you for taking part in my lollipop revolution :)

"Don't ask yourself what the world needs; ask yourself what makes you come alive. And then, go do that because what the world needs, is people who come alive" (Howard Thurman)

When you're sick and can't do much of anything, this is what ensues

2011-01-09T14:53:00.000-08:00

That's where things with Jerome are standing right now. We are not friends. The same goes for dysautonomia, it's been a blast around here.

I'm still tachycardic and it hasn't really gone away at all. My HR has been sitting around 88-92 since Friday. If I'm really lucky it will go back down to my usual 65 for a bit. Doing anything will make it spike though, standing still in the shower got me up to 132. After sitting for about 10 min it went down to 120. I put 500mls of fluids concoction through J and my HR went down some more to the high 80's. Thank you sea-salt and magnesium. Then I started feeling pukey and refluxing like a mofo. By then it was 2pm and I hadn't had anything in me for 13 hrs. I knew I'd feel gross regardless of what I did, so Jerome had some Vega mix and 500mls of water. I managed to keep it down but there was a lot of heaving and reflux up to my ears and out of my nose. Like you wanted to know eh?

3 hrs later and I'm still refluxing and feeling pukey. I might try to eat in a few hours and see what happens. Last night it resulted in a lot of pain and had me feeling more ass-tastic. It also took forever to get anything down because of good ole' dysphagia which gets worse with dysautonomia. I figure if I can get 1.5L of fluids, Vega mix and some food in every 24hrs then it's not too horrible. Although I should be trying for more. Oh yeah, while drinking my little sips of water as per. ER doctor's orders, I managed to choke on it and aspirate. I'm hoping it won't turn into pneumonia because that stuff really knocks me out.

This weekend has been pretty uneventful in terms of actually doing anything like a normal human. However, I've been able to finger-paint which makes me happy. I hope you're ready for an onslaught of photos. They're all "art" and finger-paintings. Hahaha I have way better things to do with my time, but can't. Thanks EDS.

My interpretation of an collagen cell affected by EDS.

Monkey and I did this a while ago, it lives on my back-door.

I started this one last night, laying while laying on the floor. I guess I was feeling ass-tastic enough for a nap, because I fell asleep for about 2hrs, while still on the floor with paint on my hands. The red is suppose to be orange, it looks kinda morbid don't you think?

Here's to hoping tomorrow is going to be a better day.

-"When Jerome starts behaving himself, we'll have to have some drinks over Skype or something. It will be awesome. You can drink with your new neck brace on and I can do vodka shots through my tube."
-"YOU ARE ON!!!, We need to set a date...you name it, I'll be there. Shots for you, and wine for me. Wait, I'll do a shot!"

(Facebook bendy friend Jennifer)

No room at the Mt.Sinai inn. What a joke. Still feeling ass-tastic.

2011-01-07T22:09:00.000-08:00

Photo by: Angela Perry

All of those Dysautonomia and Jerome issues I was having didn't really resolve and instead just ended up getting worse. I'm still feeling really gross and vomiting when I put anything through J, especially first thing in the day and have reflux up to my ears, literally. The adrenaline rushes that were lasting until 5am every day were followed by almost constant tachycardia and low BP. I exhausted all of my options at home but was still trying to ride it out. For the life of me, I can't figure out how the hell I manage to vomit the exact same thing that I put directly into my small intestine? It doesn't make sense (not that EDS or dysautonomia do) and should physiologically not be able to happen at all.

I was at Awesome GP's today for him to fill out some paper-work for school, and to see what he thought of the J situation. He had been reading my blog, and asked around seeing what his colleagues thought of the whole thing. He thought pretty much the same, in that the Fundo is do-able but finding someone to actually do it would be next to impossible, and that considering EDS and all the other fun I have, it wouldn't be a good idea. But in theory it would work, thanks EDS.

I had been feeling gross with dysautonomia and we were talking about that too. He asked what I thought about it all.Last night, the thought did cross my mind, to get admitted to the hospital in order to get all the Jerome and dysautonomia stuff sorted out. I shouldn't forget to say that I had been calling the GI specialists' and have not got a response yet. Today instinct told me it was a good idea to get admitted and Awesome GP agreed, he was also lost for answers and wanted me to fight hard if necessary to get in. It would have been insane if they didn't take me.

He was nice enough to draft up a letter that consisted of something like this: "This letter is to certify that (blankity-blank-blank) has been unable to keep down fluids for almost 2 weeks. She is Ehlers Danlos Syndrome. She has recently had a J-Tube inserted but has been unable to put fluids through without emesis. In clinic today she presents with hypotension, tachycardia, and as such I think she warrants admission to reesestablish fluid status but to also further investigate her J-Tube digestion issues."

So I went home, to pack for a few days at hotel Mt.Sinai. On yeah, on the way home I realized that one of my AFO's broke. Awesome. When I got J put in, the hospital was not at all equipped to handle me, and everything that helps me is here. I was scared shitless at the idea of another stay there, as last time was horrible. I still have to finish writing about that big mess.

I got to the ER with my bags, the letter, my past-reports and some EDS/dysautonomia reading. I had the most fantastic triage nurse who was also awesome enough to joke around with me about EDS. I'm glad other people can see the humor and make light of it. I was still tachycardic and had low BP. She went to put an IV in, but had a hard time finding a vein that wasn't on a joint or in my hands that could be used. The dehydration didn't really help things either. She asked one of the other nurses for help, who ended up knowing me. And that IV got put in no problem! I still laugh at the fact that a most of them know me now...

When I got a bed, they were really quick. I saw the doctor right away. He kind of listened and ordered x-rays to see if Jerome was blocked, and I got some anti-nauseants. The x-rays came back negative and I was sent home. I still felt like ass and nothing got solved. Since he didn't know what the problem was and it wasn't am emergency, I couldn't stay. Awesome eh?

I did find the idea of hanging out in the ER for a really long time difficult. The usual time isn't a huge problem but this would have been longer if I were to have been admitted. There was a guy who was loosing his mind because he wanted Oxycontin, and a poor old lady who was really upset, but didn't have any functional communication. I wanted to sit with her, and hold her hand, but wasn't allowed. I'm sure screaming guy didn't help her feel any more safe...geese.

I mentioned again that I have dysphagia and choke on EVERYTHING, need lots and lots of fluids to keep the dysautonomia at bay, and that the J-tube problem was still there. I put most things through the tube!! What was I suppose to do? This is the answer I got... "Take little sips of water to keep you hydrated, and see your GI specialist." Holy negligence Batman!! Did he forget that I have dysphagia and that I've had aspiration pneumoina? So this drinking sips business, how is that more safe than getting fluids through an IV, for both dysautonomia and dysphagia?

My blood-work came back normal, which is no surprise at all considering I have dysautonomia. I told the doctor that almost all tests come back negative, but that doesn't mean that something isn't happening, it's dysautonomia. He wasn't buying it. Oh, I also got a prescription for some more anti-nauseants. Yeah, because that was going to fix everything...holy band-aid solution Robin!

I left very livid, but too tired to fight. These last three weeks have been nothing but fighting with Jerome, dysautonomia, and what EDS has taken away. I'm exhausted in every.possible.way. Yesterday, I officially took a break from being "tough stuff" which is one of my nick-names. I am so tired, need to just "be" and maybe break some plates for fun. Finger-painting, and breaking shit is the best therapy ever!

So, I'm currently sitting in bed finishing off this post, still feeling like complete ass. I managed to eat and drink for the first time in 24hrs, and yes I did choke a bunch of times. Yes, I still feel barfy and yes, I'm going to still try to feed Jerome. I don't really have any other choices except the hospital,but there's no room at the inn for this girl. At least not tonight. Really, do I have to crash hard enough to come in by ambulance to get this stuff sorted with out negligence? So, this weekend will be spent in bed. Wonderful. I'll be back there soon enough, it's not like it will magically get better on it's own, although that would be pretty incredible.

" I would like to point out that Stan Lee's new TV show would classify us with Ehlers Danlos as Superhuman. We would be Mr.Fantastic, I checked it out."
(A bendy friend)

Photos of this, that, and everything else EDS related

2011-01-04T08:28:00.000-08:00

Happy New Year!!

I had been reflecting on the insanity that 2010 brought me. It was a wild ride, and far from boring.It was packed with some really difficult realities that had to be faced and in all of that mess, there were countless little miracles and incredible learning experiences. 2010 made me realize the universe has my back, and that was the greatest feeling ever.

Jerome is still playing the same games. Hopefully now that all the doctors offices are open, we can get down to the bottom of this stuff. A bunch of bendy friends gave me their two cents on the whole thing. It's nice to know that I haven't gone crazy, and that yes, with EDS surgeries fail. The thought of doing another couple procedures doesn't bother me, either does the pain and recovery. What does scare the crap out of me, is having to stay at the hospital and put trust in a system that made some dangerous, completely avoidable mistakes the first time. This girl already has enough trust/trauma issues from dealing with hospitals. So, I'll do what I feel is right for me, when it feels right for me. Take that negativity!

My application for school has been submitted. Now I'm in the process of filling out scholarship and funding applications like a mad-woman. Watch out school, here I come!!

This post is going to contain a lot of pictures, hope you're ready. Maybe some of the things I use to help me, will give you ideas on how to navigate life being bendy.

Since the Leuko-tape tears at my skin too much it's great for brace repair. Yoga mats make for great cushioning and traction on ankle braces when you don't want to wear shoes. Velcro and Gorilla glue are my best friends.

Living with EDS and a tube as spontaneously as possible, involves being a bit of a nomad. It all lives in zip-lock bag in my backpack. That way, I can "eat" and take care of J wherever I am.

What Jerome eats, and what keeps me mostly out of the hospital. It's so nice to push it through a tube and avoid having to gag while getting it down. The stuff works brilliantly, and is wonderful but tastes horrible.

EDS + GJ-tube can be high maintenance, with very slow healing... 2 mts later, and J is still not healed. Whoever came up with the idea of alcohol in a spray bottle is my hero. Calendula works well on minor rashes but the best thing ever is the Plaintain Salve. It takes care of wounds, bad rashes and helps take the adhesive off skin.Tape...the bane of my existence. Transpore works well if you really want something to stick but it leaves epic rashes. Paper-tape (Micropore) is much better and easier on the skin. The only down-fall is that it doesn't stick for long and sometimes Jerome runs away.

Some of the wonderful stuff that brings pain relief. I don't use the Deep-cold, heat patches or Bio-freeze as much but I like to have it around. The Chinese herbs have to be my favourite things though, along with the Acu-Ball.

When your hands are bendable, it's hard to hold on to anything. I mostly use a normal pen with a grippy thing for writing, but sometimes use the PenAgain. When my hands don't feel like holding on to my utensils I have a grippy that makes it a lot easier. The vegetable peeler is amazing. You put the ring bit on your finger and the blade in your palm, no holding necessary. When I can't open things, using stick-mat is key. I can't imagine life now without an indestructible water bottle with a spill-guard and a lid that opens easily.

Multi-tasking at it's best. Didgeridooing and drinking at the same time, while in the world's most comfortable bed. It's totally possible.

Dear: Jerome, you can have all the nasty fluids concoction you want. Drink up!!

Fluids concoction in the Kangaroo pump set. Consists of Calcium, Magnesium, sea salt and water. The sea salt maintains BP, Magnesium helps with pain, muscle tightness, keeping HR and arrythmias under control. Calcium, well because we need it more than the average person.

Then there's the times when bendy friends get together. We're not just a bunch of pretty faces...

Some of the Toronto and area bendy posse.

Funny enough, we drank all the other alcohol except for the zebra wine....we'll save that for next time. Maybe Jerome would like it.

Then we went swimming and hot-tubbing for 2.5 glorious hours. Pain relief at it's best.

And just hung-out being all bendable...

And played a game of "let's do bendy tricks!"

Which consisted of this...

And this...it's not impossible to lick your elbow.

More wonderful carelessness, you just gotta sometimes. Please excuse the cave-man hair.

You can't see it but there were at least two hyper-extended knees and really messy hips.

If only this picture showed the epic-ness of that rash. The rash on the left side of the Tegaderm is from where I tape Jerome. It's not healed enough for me to use the other side of my stomach so I have to stick with moving it around on that one side. I do love Tegaderm though, it's so much better than using Leuko-tape or duct tape with a sandwich bag to cover J up. Coban wrap and plantain salve were my best friends for the next two days.

Holly, the brains behind the newest EDS research, her boyfriend Ted is bendy.

"Creativity comes from trust. Trust your instincts."

(Rita Mae Brown)

And the one that's keeping me going this week:

"Divide each difficulty into as many parts as is feasible and necessary to resolve it" (Rene Descartes)

GJ-tube drama, and a little monkey

2010-12-30T18:41:00.000-08:00

"Dear: Jerome, I dislike your drama and have a brilliant idea to sort of replace you, and the drama. It's big and scary right now, but a thought none the less" -My facebook status this evening.

I guess it's no surprise that there is Jerome/EDS drama, so here it goes.

It's been 2mts and few days post-op and not too much has changed. Jerome is still healing, and the other day was bleeding a bit from the stoma, probably as a result of over-doing it. I still get reflux and feel sick anytime I put anything at all through J. If I have anything at all before I put something through (even two sips of juice) I will puke. The last two days have consisted of puking when there is nothing in my stomach and I'm feeding J. Whatever I put in, comes out and it's getting old.

This whole feeling sick when I ingest the food or liquids in the morning, has been going on since childhood. It's one of the biggest reasons why I hate breakfast. I'd also rather be sleeping instead.My sister has been puking first thing in her morning for years now. Maybe it's my turn ?

Here's what crossed my mind on the subway today. I need input.In theory, if I were to get a Nissen fundoplication it would stop the reflux and the puking. If I got just a plain G-tube (which is possible since I have J already, just a shorter tube) with a Mic-key button, it would be far less maintenance, I could put pureed foods in it, and I wouldn't have a tube hanging from my stomach. If I needed to puke for some reason, I'd have the G-tube. It would basically cut down all the drama, which would be very nice. Keep in mind this is just a thought, and I'm all about quality of life. Waddaya think?

Other than that, everything is good-ish.
School paperwork is coming along, and......Skating is still on the "can do" list :) The climbing gym trips with Monkey had to be replaced, so it's the beach in the summer and skating in the winter. We're more than okay with it.

Tomorrow is officially my last day as an IBI therapist. Thanks EDS.
There are a lot of mixed feelings about it, but right now I'm choosing to be greatful for all the priceless things I've learned and can take with me.

Here's a little video I made of mine and Monkey's day today...

Think about this today...

2010-12-29T08:21:00.000-08:00

I came across this quote this morning, and found it to be quite fitting and rather empowering. I hope you get something out of this too, and continue to make your way through the crazy journey that is life with courage, resiliency and drive to do whatever you want.

"Whilst in the pursuit of a grand,wonderful dream, should you all of a sudden round a bend and see before you an enormous uncharted mountain with towering cliffs, jagged rocks and seeming impenetrable walls, just consider it a sign that your dream is considerably more worthwhile than you had previously imagined, and that you're exactly where you're suppose to be."

Write it down and keep it close.
Take that negativity!!!

Fluids, art & being a mutant/clone

2010-12-26T22:14:00.000-08:00

I hope you all have been able to enjoy the holidays, and doing whatever makes you feel good.

In my case, there was another ER visit last week for fluids because I'm awesome.I managed to stay away from the hospital for three weeks this time. I had been feeling craptastic with the usual dysautonomia stuff going on, although not crashing nearly as bad. Thank you Jerome.

I knew I wouldn't be able to ride it out, and I had a few options.

a) Try to avoid the hospital here, and end up in the ER at the shitty Ajax hospital over Christmas, where they don't know me or have anything on file

b) Go during the day, and loose a day's pay

c) Go, when it wasn't going to be busy,where they know me and be able to work the following day.

I chose option C.
The triage nurse was initially a bitchy about the whole thing. She didn't want to listen to me, or add any of the info I brought to my chart because apparently, "they wouldn't know what EDS or dysautonomia were and wouldn't bother reading it." What a bunch of crap. After I insisted, got a little louder, and asked for a new nurse,one of the other nurses took notice and remembered me...My info was added to the chart, and bitchy nurse got put in her place :)

When will people learn not to mess with this girl?

Funny enough, all the ER nurses read my info and let me call the shots. So, I ended up getting the usual 1.5L of fluids and 50mg of Gravol.My blood-work came back normal, waddaya know. They didn't bother with any other tests.

I'm convinced the crazy dysautonomia has something to do with crazy hormones, as it happens every single time. One of my other bendy friends has been getting treatments for funky adrenal/hormonal stuff and since doing so, hasn't had any symptoms of EDS or dysautonomia. She's totally convinced it's all adrenal/hormonal related...When I win the lottery, I'll give it a shot too.

Jerome is finally healed enough for some art.He makes for a really good canvas.I have a ton of ideas but will always welcome requests and suggestions. The possibilities are endless.
Pooh is bendy too! His leg is hyper-extended, his hip and arm that's holding the balloon are dislocated.

Jerome and I were getting Christmas cards, so I thought it would only be appropriate for J to wish everyone a Happy X-mas. This Santa is bad-ass, he's zip-lining!

When I got Jerome put in, someone suggested I somehow make it into a elephant...

Now for the genetic mutant & clone segment of this post. My sister and I are monozygotic (identical) but there are some differences. For one, I don't think we look a-like but apparently we do...We have a lot of the same EDS issues and similarities but she doesn't have dysautonomia, and her range of motion isn't as crazy as mine. Those differences have been attributed to lifestyle differences. Here are some pictures of our "sameness"...
We both have a hard time using our hands, rubbery fingers are pretty useless.

Our hands are turned a full 360 degrees along with some elbow hyper-extension thrown in.

We used to think everyone could turn their legs like that...those crazy normals.

Standing with flat-feet is so over-rated.

Me on the left, my other half on the right. Don't even try to tell me we look alike...Because we don't. End of story.

Before I forget, I had a little Christmas miracle happen :) One of my really good friends has been hearing about my plan "C" for a while now, knows how bad I want it, and thinks it would be perfect for me. I got a pep-talk, and was given a few things to get the ball really rolling the way I want. Moving in with my parents will hopefully be avoided.

And.......skating is still on the "can do" list!!!! I took Monkey in hopes that it would be something we could still do. Last year I had to give up climbing, so we couldn't do that anymore and we were both kind of crushed over it. I tried skating last year and it was a success for both of us. I could still do it, and he got to really work on his balance, co-ordination and gain some confidence. We slapped on some skates and hit the ice last week, without injuries. I use hockey skates, they support my ankles like AFO's and it's a low-impact activity. I was nervous about my really unstable hips, but they were fine. Needless to say, we'll be going again until the rink closes in the spring.

"Here comes the sun, do,do,do,do...I say, it's alright."
(Beatles)

You just gotta, it's plan "C" or bust!

2010-12-19T20:38:00.000-08:00

Do you ever have an incredible opportunity that only comes around once, where you want it so bad, but it scares the crap out of you?

I'm in that boat right now. I've got the most amazing and brilliant opportunity to cease, or it's move home with my parents in suburban hell. I want to make this happen, and it's very possible to make it work with EDS. I've essentially got it all figured out, but can't get myself to actually make it happen. I feel stuck and essentially paralyzed by fear.I used to think I was invisible from that part of EDS, stupid me. Instead of doing what I need to do, I'm writing a blog post at 2am.

I'm scared that I'll get everything together, it will all fall into place, then EDS will turn uglier and it won't be able to happen. That's exactly what happened when I applied to a specialized program in England. I got accepted during my interview, and scored a huge scholarship. I had everything I needed to go, with the most important things being passion and drive. EDS got worse, and there was no way I'd physically be able to do the program. I had to give it up. Some people think I just walked away from it, and blamed it on EDS. This was just after I officially got diagnosed and wasn't nearly as bad, but I was quickly falling apart. Instinct told me that EDS wasn't going to stabilize anytime soon, and would get worse. I don't blame or resent anyone for thinking how they did, but when I tell someone about my newest opportunity and they bring up how I chickened out of England....that's not fun. I sure as hell didn't back out because I wanted to stay here, and it really wasn't a choice. I'm terrified of it happening again, I'm tired of having my little world that I worked so hard to create, come crashing down. The irrational and pessimistic part of me is saying "don't even bother", "it's going to happen again", "EDS is bigger than you"...Isn't negative self-talk fantastic?

Apparently I'm sleepwalking again. My room-mate said that instead of just walking around the apartment doing random stupid things, I've managed to leave the house. I wake up with everything exactly where I had left it before I went to sleep , including myself in my bed. Apparently, I managed to throw on a pair of shoes, somehow remembered my keys, walk down a flight of steep stairs and make my way around outside. Now, she didn't actually see me do it, but she heard clomping shoes, she heard me talking to myself, the door open and me go down the stairs. She thought I was just taking another trip to the ER. So, I have absolutely no idea what I did, or where I was. Holy scary Batman! I'm convinced it was house trolls.

I could very well be sleep-walking again. I thought that because I was doing really well in the sleep department (well the sleepwalking and anxiety part) I stopped taking one of my supplements that helped with it. It's expensive and it would have been one less thing I'd have to keep track of. I tend to sleep-walk as a grief-loss response. I'll be unemployed in about two weeks, and leaving one of the greatest jobs on the planet. One of my bendy friends died and I'm coming to terms with the very real possibility of moving home. I just love it when my worst nightmares come true, thanks EDS. I've gotta go back on those supplements but I'm still blaming it on the house trolls.

So on to more positive things....
My plan for the Kangaroo pump has worked out well. *knock on wood*. I've been putting 500mls of my concoction through when I wake up and go to bed, and have been feeling great. I think it's helping prevent crashes during the night, and it definitely kick-starts things in the morning. I throw in my Vega mix through a syringe, and I'm good to go. If I do that, then I usually have a close to normal appetite and can eat throughout the day. If I don't do the mix or Vega, then I'm back to not wanting anything to do with food or liquids. I still choke and aspirate on everything, but I love food too much to completely give it up, and am nowhere near ready.I'm eating peanut butter on celery right now, mmmmmmmmmmmm.

Yesterday, was spent with the Toronto and area bendy posse. It's always nice being in the presence of people who truly get it, where you can ask anything and no one will get freaked out, and where you're "normal". We went hot-tubbing for two glorious hours. Well the three of us who are POTSy, had to switch between the hot-tub and pool quite often and drink a ton of cold water but it was awesome. There's nothing like floating, and having ALL of your joints stay where they belong, not to mention the most wonderful pain relief. Gravity is over-rated. The Tegaderm patches were brilliant, Jerome stayed happy and dry. The epic tape rash wasn't so wonderful, but well worth it.

I know there are a lot of us who are just plain stuck. It sucks, and we all want to move forward. I was introduced to this book this past summer, life was pretty awful, and it really helped me put my head back where I like it. If you see the world like I do, (in terms of beliefs) the book is brilliant, and just might be the thing that motivates you to get back in the game. It's called The Four Agreements, http://www.miguelruiz.com/index.php?p=Books., and yes, I will be reading it before I go to bed and reminding myself what I need to do.

This is where I need to take my own advise...
A lot of people ask how I manage to keep it together and work my way through life with such a positive attitude. Just so you know, it's not easy and not always positive. I just had a nice little melt-down tonight. But, I am living with EDS my way. Not anyone else's way. This is my body, and my life. I've had to fight hard to get to where I am now, and not everything has worked out the way I planned, but I'm still doing it my way. We should all do what works for us, and do it our way. If it feels right, do it. If you're not sure about something, take your time and think about it. If it still doesn't quite feel right, then don't do it. That also goes with dealing with stupid doctors who think they're god. Don't take any crap, you're allowed to fight back and you're allowed to get rid of them if they're not helping. No one has consent to make you inferior, and it's always nice to serve someone like that a piece of humble pie. I guess the most important part, is to be completely honest with yourself, and trust yourself. Have confidence that you know what is right for you....because you do.

P.S. Jerome says "hi" and that he likes vodka.

Plan "D" to stay out of the ER and other babble

2010-12-13T20:46:00.000-08:00

We all know how EDS works, with the only constant being change.
Today, I took it upon myself to change it up on EDS, which will hopefully keep me out of the ER for longer periods of time.

My Facebook status consisted of this:
3 syringes 60cc $8.25
2 rolls of paper-tape $4.50
2 rolls of Coban wrap $9.90
1 Kangaroo pump set $16.95
5 Tegaderm patches $33.95
Staying out of the ER and kicking EDS's ass: Priceless.

I have to say that the Kangaroo via gravity for fluids is amazing. Part of the problem before, was that if my hands were being horrible, using syringes to pump enough into Jerome wasn't ideal. The Kangaroo does it all for me. I made my own mix of electrolyte minerals, sea salt and just tap water. I threw it in the Kangaroo and let gravity do the work. I got in 1L of my concoction in 15 minutes through Jerome. I had to pee like it was nobody's business after, but that happens when I make an ER trip anyway. I can hang the bag from pretty much anywhere and the tubing is long enough that I can walk around my room or lay in bed. This means, I'll be able to bring it with me when I go camping and hang it from a tree. The possibilities are endless.

Since Jerome is taking his sweet time healing, I still have a stoma. I got the Tegaderm patches because they're water-proof and will protect J from all the mingin' bacteria when I go hot-tubbing. I will gladly take epic-tape rash if I means the amazing pain relief I get from floating in hot water, there's nothing like it. The Coban wrap was surprisingly cheap but the largest they had was 3.5", so we'll see how it works. I'm planning on using it after the Tegaderm and giving my skin a chance to heal. I'm not holding my breath, but who knows it could be fantastic.
For those of you who are curious what Jerome eats, it consists of two things. I use a vegan whole food formula (meal enhancer drink). One serving contains all of the recommended daily vitamins and then some; with the Omega's, protein and everything good. It's called Vega, and I love it. It also does not contain a lot of the common allergens, sugars or chemical grossness that are found in other g-tube friendly formulas. http://myvega.com/products/whole-food-health-optimizer/features-benefits
The other stuff Jerome eats is a greens mix. That's what I started out with before I got J, to ensure I got all my vitamins and some carbs in when eating wasn't an option. I will say that the berry flavour used to enhance it, probably makes it taste more disgusting. Even the smell of it makes me gag, but that could be attributed to being sick while I was trying to choke it down and stay out of the hospital. Either way, it's vitamins and it comes in a big container like the Vega, or individual packages (which I use) so I can have access to "food" anytime, anywhere. The only down-fall, is that it doesn't do much for reducing my carbon foot print.

A lot of people have been telling me I'm looking better, and have my colour back. I guess I'm doing something right. I still get a good laugh when people find out that I've got Jerome and I'm sick with two things that don't have a treatment or cure. Then, I get the classic line we have all heard a million times,"But you don't look sick". That's when I throw in a "Surprise!" because there's nothing else one can really say.

As I was digging myself out of my latest epic funk ,and just started being interested in life again EDS had other plans for more than one of us. Last week one of our bendy friends Maria died. Thanks EDS. I never thought in a million years, that I'd be part of a club that included having to say goodbye to some really amazing, beautiful, people living as best they could; despite this monster. Every time a bendy friend looses their life to this crap, it's a slap in the face and a reminder that we need to value every moment we have. Even if diagnostically, we're not meant to leave this earth early.

Pretty awesome toque eh? Yes, I just said the words toque and eh in the same sentence,stereotypically Canadian. My bendy friend Christie gave it to me when I got Jerome put in. We put it on my IV pole, my fluids and meds looked pretty bad-ass!

So to all my bendy friends: Fight like hell, and then fight some more. Not that we really have a choice, but we can choose to make it work for us. See something for what it could be, try your damndest to make it happen, and turn it into something that is.

Digging out...

2010-12-08T19:02:00.000-08:00

So I'm slowly working my way out of this epic funk. It's been a while since I've felt that helpless, scared shit-less and hopeless. Wasn't that classy?

It took a few days to get enough motivation, to even think about attempting another start at life. It doesn't change the fact that I'm still really tired and just sick of it. Before I was ready to get back up and keep moving, I needed to process and just be. This happy-go-lucky girl needed to put away the positive attitude, and face a lot of hard, scary shit. There is something good to be said about sitting alone on a beach in the dark, having a good cry and a talk with the universe. Maybe because I like to do that stuff alone, or maybe it's because when I'm near the water, I feel whole. Either way, it was where I needed to be at the moment, and it felt good.

None of it means my situation has changed, or suddenly become better, but it means that I took a long hard look at EDS, and decided that I was still going to kick it's ass. Not that there's really a choice.

A huge part of being able to start digging out has been the incredible support of friends. These are the people who accept the whole package that is me, even when I'm not all smiles with sprinkles and a cherry on top. They offer to come visit, go out for a bite, and do things that make me happy. They find ways to keep me engaged in the world, and let me be alone when I need it. There's always a listening ear along with a laugh and encouragement to keep moving forward. Really, what else do we need in life?

I think I may have found another game plan to avoid the ER for a while. Since I can't seem to handle anything by mouth before I put something through Jerome without puking, and always feel gross waking up, I'm pretty sure it's a dysautonomia thing. I'm going to see if getting 500mls of some home made natural electrolyte/saline type concoction on a gravity t feed will work,.Hopefully if I do it first thing when I get up or am feeling extra gross, it will yield some results. I guess the bonus is that I can still lay down and just chill out instead of trying to fight with feeding J, because sitting makes things worse. Not to mention, if I feel like I'm going to pass out, I'm already laying down.

I found this awesome vegetable peeler over the weekend and love it! My fingers don't dislocate!!
http://www.chefn.com/Product.aspx?id=51

In the midst of this funk, I realized that even though things are crappy I'm still really lucky. I may not be one of the "lucky ones" who we all had hope of being in the beginning of our walk with EDS, but I think I fall into a different "lucky ones" category. Sure, I feel like ass every single day, I need a braces, a wheelchair and a million other things to function. However,I have avoided a lot, and have been able to live a pretty damn good life. Aside from getting Jerome and fluids, I haven't needed any other medical intervention. None of my organs have prolapsed, I haven't needed any othro. or neuro. surgery, or crazy meds to be able to function. Everything else has been tests, consults and fighting so I can do it my way. I am lucky because I have found awesome people who always try to find ways to make life work with natural and Chinese medicine, who have never given up when everyone else has. I'm still scared shitless at what could happen and what will most likely happen, but sitting and waiting around for it to happen is so unproductive. So, I say eff it. I'm going to do it my way because you only live once, and there's only one way to find out if something will work. If plan "Z" doesn't work there's still room to come up with something else.

I hope for any of you that may be in a funk; that you can face the scary shit, decide that you're going to kick it's ass and can start moving forward with a new plan. Remember to do it in your own time, and in your own way, because that's really the only way.

"When I find myself fading, I close my eyes and realize my friends are my energy."

Waving the white flag

2010-12-03T23:45:00.000-08:00

Today, my facebook status consisted of "Dear: EDS, fuck you. that is all".
It was followed by a whole bunch of "likes" and similar comments from fellow bendy friends.

I've been really trying to focus on the positives, with a whole bunch of transitions happening at once. Some days are better than others, but it's been hard. There have been many moments this week where I have wanted to wave my white flag and just give up. I only have so much fight in me.

The biggest trigger for my current low is probably the ER visit earlier this week. Holy letdown Batman! Dysautonomia got the best of me, despite my efforts to stay away from the hospital. It was the usual over-response crap, minus the barfing (thank you Jerome). Although I was refluxing on water, it was gross. I had been pushing liquids, salt-water and supplements through J, and drinking lots of water, but to no avail. I had been really dizzy, with brain fog and completely exhausted when I had my follow-up with Awesome GP. He told me to get fluids if it got worse and it did, so I spent the afternoon in the ER again.

I'm not sure wether to laugh or cry over the fact that there are people on the ER team who know that I'm the girl with EDS, know my name, and know that I know my stuff, and let me call the shots. Ya know? It's come to a point where it's almost patient directed care. There's a bit of routine...I go into triage telling them I need fluids and Gravol, they do the standard evaluation, I hand them my past ER reports, info on EDS and dysautonomia and we get started. I can tell them where my good veins are, not to waste time doing any tests, and that I'll be fine after 1-2L of fluids and 50mg of Gravol. I change into my pj's, they put the line in and push the Gravol through. I lay down, throw on the mp3's, and take a nap. A couple hours later I'm feeling better, and am ready to get the hell out of there. I'm sent off with the usual "you know when you need to come back" and "good luck" every.single.time.

I'm usually asked a million questions, which I don't mind. They're wanting to learn, cool! This time, it upset me a bit. I think it's because I'm actually listening to what I say and it's not fun to hear when your conversation goes like this:
- So is there are there any treatments or anything they can do for the EDS?
- Nope, it's treated as things come up, although a stem-cell transplant would be nice.
- Oh.
- What about the dysautonomia?
- Yeah, nothing for that either, you can kind of treat the symptoms as they come up.
- Wow, that sucks. Good luck.

The positive, optimistic, idealist in me says "It's not all that bad, I could be needing to live on a ventilator, and not be able to move or talk" but there's been a huge part of me saying "Yep, it really sucks". I've exhausted pretty much every possible resource, and can't be anymore pro-active. When I ask about other options, and the answer is "I don't think there's anything else we can do". It's like being kicked while you're down.

One of the biggest reasons for me getting Jerome (gj-tube) was to avoid the ER. Yeah, that plan failed. Just like every other plan. I think I've got one last trick up my sleeve, but who am I kidding, it's EDS. You can plan all you want, come up with 6 different back-up plans and it will still find a way to win. With each failed attempt at trying to re-gain some control over your life, and this stupid disease, it doesn't leave much room for hope that things will eventually get better. That means that the constant appointments and visits to the hospital will continue. Perfect.

I know I am sick. I know that it's not ever going away, and I know that it will probably get harder. What I don't know is, what I'm going to do next, how the hell I'm going to manage, and what EDS will take from me next. I have very few things left and don't think I can deal with loosing anything else. Really, I'm a month away from being unemployed. Physically, I can't do my job anymore. I can't get a desk job, or anything that requires me to be upright for long periods of time. So for now, my options are going back to school and see what happens or, go on disability. I'm not ready for it, but I feel like that might be my only option soon. My worst nightmare is essentially coming true. I'm having to give up everything I've worked so hard for, including my independence, which is one of the most important things for me. I'd have to move back to my parents house in suburban hell with no job, no friends there, nothing to do and nothing to contribute. I will be relying on other people, yeah... not my thing. I've spent the last 10 years teaching people skills to be independent as possible, I try my damndest to practice what I preach and now I'm needing help with everything. Barf.

It drives me absolutely crazy when people ask me what's new, and I can't come up with anything but my most recent medical drama that has consumed my life, and what I can't do anymore. Then I get the usual "take care of yourself and stay out of the hospital" for a farewell. I'd love to stay out of the hospital. As one of my bendy friends said today "I'm sorry my life is nothing more than a giant freaking broken record. I can't help it and trust me, I'd change it in a second." She summed it up perfectly.

I don't know if it's because I've always had a game plan, but everyone asks what I'm going to do next. To be perfectly honest, I don't know what to do anymore. I'm tired of fighting all the time and constantly loosing. I'm just sick of this shit, all of it. I'm not going to ask "why" and try to come up with some philosophical reason for it. I'm also not going to pretend that everything is sunshine and lollipops. I might slap a smile on my face and pretend that living with this shit isn't a big deal, but it is. It's a big, complicated, painful mess that nobody can figure out,and there's a lot of us stuck in the same exact mess with the same crappy options. How uplifting.

So for now, I will continue doing what I can, eat ice cream, and play my didgieridoo. Maybe I'll somehow have an epiphany that will find me a way out of this mess.

My apologies for the negativity, but it was honest. Pretending all is well would be a big giant lie.

"Truth is like the sun. It may go in for a while, but it ain't goin' away"
(Elvis)

Three Good Things 2nd edition

2010-11-29T22:45:00.001-08:00

So, there are a lot of people who check this blog out...I know this because I have super-powers. Or, it could be the stats button I just found. I need reader participation for this post.

In the past week, I've listened to a lot of stupid things people say when they see this "disabled girl". The "I don't do pity" and "Thank you for your ignorance" lines were used quite a bit. Heaven forbid I get treated normally...

I have decided that, this is going to be another edition of Three Good Things...

1) I can finally play my didgeridoo again. It doesn't hurt J anymore, I can get some really good breathing exercise in, and completely chill out.

2) Laying on my stomach is once again possible (for about 30 min). It makes my hips, back and SI joint very happy.

3) Jerome can do vodka shots. You read it right.... It burns for a minute, but then it hits and you get drunk straight away. Don't tell me that if you had a tube, you wouldn't want to try it....

P.S. I have managed to stay out of the ER (dysautonomia) for over a month!! Greens mix, salt water and acupressure seem to be key.

Now it's your turn to add your Three Good Things (in the comments section).It doesn't matter what they are, because positive anything is better than negative nothing. I know you're reading.....no pressure.

Because it's important....

2010-11-23T08:23:00.000-08:00

Since this is my blog, I can do what I want with it :)
This isn't exactly EDS related, but I think even more important.
Please take two minutes to check it out, and pass it on.

A lot of firsts, and Clothes & braces part 2

2010-11-20T23:33:00.000-08:00

Sitting in the world's most comfortable bed, and eating a bowl of ice cream.... I am doing that right now and it's wonderful.

I guess I'll start with the Jerome (gj-tube) drama.
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. Tape is driving me INSANE, even paper-tape leaves epic rashes. A week after J got put in, I started sleeping without any thing on my skin to let it air out and heal. It was all fine until one morning, I woke up around 2:30am with the tube pulled down to my knees. There was a brief "holy shit!" then I cleaned J off, and put it back in. I was tempted to go back to my nice warm bed, but decided the ER would be a sensible idea. It was already infected, kept coming out, and I wasn't sure if it was back in place. The last thing I needed was to mess up the rest of my GI system. The ER doctor was excellent, we tried to flush it but it felt really weird. He ended up ordering a new gj-tube to get replaced a few days later, but I was not allowed to use the tube. Having to go back and ingest things that tasted gross wasn't fun. I went in to get the tube replaced and was ready to fight after my disaster of a hospital stay for the tube. It turned out that the doctor doing the procedure was a vascular surgeon, who knew a lot about EDS but I was his first type 3. He did a fleuroscophy first to see where J was, and what the problem was. Well we found out there were no problems. Apparently I was thinking straight when I cleaned up J and put it back in. Take that EDS!!

I've learned that I still can't eat anything in before at 1pm at the earliest. Also, that I need to put stuff through tube before anything in my stomach. Otherwise I end up puking, and whatever was in my stomach will not stay down.

Now for braces and clothes part 2.
A friend of mine had an extra ticket to the ballet tonight and thought I'd like to go. He was most definitely right. Yes, I can be a total girl. I used to go to the orchestra quite regularly. Trying to find clothes that could still fit was an adventure to say the least. I have three pairs of shoes that I can wear with the AFO's. The pair of skateboard and purple shoes would not be worn to the ballet. That left me with some black, but good looking men's shoes. Long gone are the days of wearing a cute dress and heels. I had lots of pants to wear, but they were all too big because I lost weight from dysautonomia, and they were too long as I used to wear heels with them. I found a pair that was once too small (so glad I had them) but they were too long. The Leuko-tape that sometimes holds my joints together was put to good use. This was the first time that I got really anxious and self-conscious about my braces. Luckily I got a quick pep-talk from one of the most awesome bendy friends and I was ready to take on the ballet. The show was amazing, I'm glad I didn't chicken out.

I have complied a pretty big list of all the different places that I've laid on the floor. It even included the time when I went to see Dalai Lama. The ballet is not a place for that. Staying upright for that length of time was difficult and uncomfortable. Maybe my body isn't cut out for that kind of thing anymore.

I still have to sort out the mess that went down at the hospital for my gj-tube placement, and for a few other things.The whole experience has pretty much sucked the life out of me. Apparently western medicine still really messes me up in the head. There are a handful of people in that group that I do still trust and they know it. Haha, no pressure for them! Awesome GP has gained about 10,000 points this month, I'm so glad to have him.

"Do you know the muffin man?"
"The muffin man?"
"The muffin man!!!"

(Shrek)

Photos of some things EDS

2010-11-13T10:00:00.000-08:00

I am well aware that this blog is lacking in the photo department, at least I think so. So here's EDS in some of it's glory. Enjoy!

Jerome and the Holter are ready to party! Having the gj-tube and all the wires were a huge pain in the ass. Glad it was only for 24hrs. 4 days later, and my skin still isn't happy from all the tape.

Jerome and Holter...Trying to conceal a tube and all the wires was interesting. Eventually I stopped caring, and if people stared, then I hope they got freaked out, haha
A combination of a Al-Greens mix, Iron, Zen Theanine, Fish-oil and salt water. Thank you Jerome, I don't need ingest any of this nasty stuff anymore.
The one good day without any tape rashes in the last two weeks.
This was the piece of paper that has saved me from a TON of fighting with health care providers. I made EVERYONE read it, before they did anything to me or asked questions. It was a life saver.
My new best friends. I was originally going to get the Koi fish tattooed on my leg but then AFO's came along, so this is my plan "B". The Celtic tree of life didn't turn out as originally planned but I think I like it better this way. The Koi is symbolic of perseverance in adversity, and strength of purpose. Also courage and ability to attain high goals. The Celtic tree holds the meaning in balance, strength, longevity,rebirth, life force and interconnectedness with the universe.

The shoulder that dislocates a million times each day. Multi-directional instability, dislocations happening with a 20 degree flexion woot!

Apparently I angered the gods...Dislocated it typing, while yelling at my computer.

I do not enjoy having bendy fingers, it makes everything difficult and I haven't found any advantages of it yet.

I had no idea feet weren't suppose to bend that much...

The classic bending over with straight legs and palms flat on the floor
Didn't know that was abnormal either...I thought everyone could do that. Before the AFO's I walked around with my legs pretty close to looking like that, turned in a little less. Yes, my hips are a mess.
One of my favourite tricks, because the look on people's faces is priceless.
That's how I find myself standing with out supported ankles. Yes, I will forever have horrible tan-lines.

There are more pictures floating around somewhere...I'll get to it another time when I'm stuck in bed.

It's okay to be okay

2010-11-04T22:20:00.000-07:00

This post has come from having old wounds opened, and new ones added to the collection. My stay at the hospital was a nightmare, and yes I will eventually be opening up a can of proverbial whoop-ass. For now, in hopes of being able to get this off my chest and maybe some sleep, I will present you with this.

It seems as though Western medicine has started to catch on to the idea of treating the whole person, and trying to include mental and emotional health into their scope of practice. I think it's a huge step in the right direction, and hopefully it will help change the way patients are treated.

While it is no secret that I have gone the route of natural medicine, and think it's the greatest thing I have done for myself, it may not be so known as to why I made the choice. 13 years ago when I started on the long road of EDS, it began with a dislocating shoulder and all over joint pain. I was referred to two surgeons, put on pain medications and told that it was no big deal. Over the years as more joints started to dislocate, pain become less manageable I ended up seeing more and more doctors. I was told that there was nothing that could be done, that I was making it all up, looking for attention, doing it to myself, blowing it out of proportion, and that I just had to learn to live with it. Nobody could explain why all the treatments I tried were failing, other than that I was sabotaging them and wasting people's time. Awesome, just what I needed.

This lead to my eventual miss-trust in pretty much everyone who practiced Western medicine, and depression. I was thrown on a few different low-grade anti-depressants and I got some anxiety meds for emergencies. The girl who was once happy-go-lucky had turned into a ghost walking around in a shell. If I could use one word to describe that time in life, it would be: numb. As a defense mechanism, I learned to turn off every emotion and not attach myself to anything. Doing that would mean I wouldn't loose anything. If I didn't feel joy, then I wouldn't need to feel sorrow. If I didn't feel optimistic, then I wouldn't feel let down either. I thought for me, that it worked. I could walk through life in a fog, not feeling anything, and eventually things would get sorted. I just needed to wait it out. I was so wrong.

It took a while, and some very honest friends telling me that no, I wasn't okay and I to make some changes. The first thing I did was find a naturalpath. My consult was 1.5 hours, we covered EVERYTHING and the thought of that baffled me. Why hadn't this been done long ago, when the whole EDS mess started? And, why was she the first person who really listened to me? I left her office feeling optimistic, and far less numb. That day, I decided to scrap Western medicine and put a bit of faith into something else. Over the years, holistic medicine has also helped me learn to think differently, which lead me to living differently.

So we'll go back a little bit to where I started. The reason I'm bringing this up, is that all of the doctors and most of the nursing staff at the hospital asked me about how I manage to keep positive. How could I be excited to get a gj-tube put in? Surely, it's not possible for me to be okay with all that's happened. Haha, if they only knew some of it. I had a neurologist consult this week to get the suspected dysautonomia sorted. He kept asking about what life was like before EDS got bad, and how I've handled it over the years. This meant that wounds that just healed, got opened. My psychologist thinks that I have trauma issues, as a result of dealing with all the negativity thrown my way from doctors over the years, and needing to fight for everything.

I won't lie, loosing the ability to do everything you live for is hard. Going to sleep and waking up in pain everyday is hard. Giving up some amazing opportunities, and even girls nights is hard. Feeling like you've been left with nothing is hard. Gaining things that will make life "easier" is hard. I don't think anyone as a child envisioned braces, wheel-chairs, endless doctors appointments and extra tubes sticking out of their bodies when they grew up. Yet, here we are, with varying degrees of disability and regression; with lives that somehow need living. I will be the first to say that going through the grief process, with a condition like this never really ends. It comes in waves, depending on what life throws at us. In the last year I've managed to get over the anger part, and am pretty much through the sadness bit I think. I have my days when I'm so tired of fighting all the time, just to be able to live. I pay insane amounts of money for treatments (which I love and think are totally worth it) to be able to work, have less pain, and possibly slow things down. Those are the days where I stop caring about everything and completely shut down. I isolate myself and just process, it's what I need to do.

Being okay takes a lot of work in being really creative, resourceful, brave,stubborn,patient and having confidence that all will get figured it out. I find ways to make whatever has been thrown at me, work. I've learned not to have any expectations, but to go along for the ride and enjoy it as much as possible. It can mean jumping in with both feet, or taking a step back to think about if something feels right. That's the other thing that has really helped. If it doesn't feel right, then I won't do it but, I will fight for what feels right for me and so should everyone else. It means slowing down, and not taking anything for granted. As a rule for myself, I have to find at least three good things about my day before I go to sleep. There are always good things in each day, no matter how bad the day was. For me, it also means having faith that the universe has my back and that I'll always somehow make it through to the other side even if I have no clue what's in store. Who does anyway?

I have lost pretty much everything, but have gained in so many other ways, that I wouldn't trade my experiences for the world. Those are the things that help shape and push us to go further than we ever could imagine. Sure, the journey is hard and at times just plain horrible, but we can always look back with pride at what we overcame and accomplished. For those of us who are young and were once ready to take on the world, being thrown into the land of EDS has probably knocked our entire lives off kilter. We were forced to grow up and mature quickly. A lot of us facing, or coming to terms with our own mortality. When that happens, everything seems to take on a new definition, with a deeper meaning. We measure life in the little things that make life wonderful, rather than what is quantifiable.

I came to realize, that these are the same lessons that takes almost everyone a lifetime to learn. In a way, I'm glad to have learned these things now, so I can live life to the fullest and not sweat the small stuff. It has essentially saved me a lot of unnecessary pain, wasted time and sweating the over petty things.

Living with something like we do, is far from the norm of most people. When they learn about how we live, with the insane amount of complexities; it's not how they picture living life. It's not what they want for life, and it may just be a bit scary. Think of how it was for us being freshly diagnosed or just starting on this road. I'm sure I wasn't the only one scared shit-less. If someone hasn't even been able to experience the symptoms (although I'm jealous), having to see what EDS can do isn't pretty. Knowing there's nothing that can be done to make this beast of a condition go away, and not having a clue how to help is probably intimidating, even if you're not living it. Maybe the best thing they can think of to help us is to see if we're okay, because it is something, and it's something they can do for us, when everything else is beyond anyone's control. Sometimes, that is the best gift we can get. It doesn't happen often that someone is willing to check in with us mentally and emotionally. Because so much of it is physical, it takes a lot of work to be able to move past that, and get into the the one of the most important aspects in living with the monster we call EDS. (Please correct me if I'm wrong)

This is the little revelation I had over the weekend. I started this post earlier in the week, rather annoyed that I felt it wasn't okay to be okay. Now, I may see why someone may wonder if we're okay and if we are, how the hell we managed.

Some of us are further along this road than others. Some of us are in the thick of it and can't quite see the little spec of light at the end of the tunnel. Some of us have just come out on the other side and are ready to live, laugh, love and fight for what is right for us. Regardless, if we face the things that are haunting us, and don't back down, in time we'll be okay.

I guess all we can say is that, it's okay to be okay and it's awesome. It just takes a lot of work.

"I've got a lot of lemons and am trying to make lemonade. Now, if I could only find the vodka!"
(Tiffany, a fellow bendy friend)

Introducing Jerome, my gj-tube

2010-10-28T17:40:00.000-07:00

So I rocked the tube!!
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.

I'm still not allowed to have any of my supplements, so my body hates me today. I'm getting some pretty insane muscle cramps and joint pain. One of my nurses, thought it was because I had been laying down all day. Little did she know, I had been upright for most of the day, and the cramps are caused by lack of calcium and magnesium.

I'm hoping to be discharged tomorrow as I've managed to eat 3 slices of pizza (no gross hospital food for me) and have been up & about. If they don't let me go, this girl will no longer be sugar and spice, but instead will not be nice.

Without further adieu, I will introduce Jerome...

My stomach is still bloated and filled with air. It hurts to fart and burp. The tape from my IV's and Jerome are so itchy and driving me a bit insane. I'm anticipating some pretty crazy rashes and blisters. Oh, EDS you make life so interesting.

"She totally did her hair before surgery in case there was a McDreamy or McSteamy around"

EDS + unnecessary night at the hospital ='s hell.

2010-10-28T05:10:00.000-07:00

Well, I have to say this has probably been one of the longest nights of my life. Yesterday, I was suppose to be admitted around 12:00 to hang out until this afternoon until my surgery. Why? Who knows, I'm still trying to figure that one out. My friend and I got to the hospital on time and were told that there wasn't a bed ready yet. They told us it would be a couple hours, luckily my friend lives down the street so we ended up going to hers. Two more hours passed and they still didn't have a bed. We said screw it, and decided to go out and enjoy the beautiful warm sunny weather and ended up hanging out in Chinatown while we waited. I'd take that any day over sitting for hours in a waiting room. We both ended up with fun accessories before there was a bed ready. I got admitted and everything in place.They did some blood work and got a line started, then the resident came to check things out and find out more about me. She was fabulous, much better than the GI specialist who isn't too keen on listening to me and asking my opinion of things. I was able to eat the food I brought and just made myself comfortable for the night.

That's when it all went down hill. I wasn't allowed to take my supplements because they don't know enough about them to know if there will be drug interactions or anything else. Wonderful. That left me screwed. The stuff I take helps with pain, insomnia, anxiety, muscle cramps and just about everything else. Hospital pillows suck. They're thin, covered in plastic and filled with air. Not what someone with EDS needs. There were a million nurses in and out of the room (which is no problem, they're doing their job) but when sleep helps with pain control and you're not getting it, life isn't fun. Luckily, my night nurse kicked ass and managed to get me some Advil, ice packs, more pillows, fluids and did whatever she could to make things more comfortable. She also took the time to understand EDS in all of it's glory.

I ended up having a meltdown at one point. I was so tired, sore and frustrated that I was stuck in a place that was suppose to be taking care of me, but it was the complete opposite. If I were home, I would have been comfortable, in far less pain and probably would have slept pretty well. I'm essentially running on a nap, so the anesthesia is lookin' pretty good right now.

The tube is suppose to go in this afternoon. I'm not on any food or liquid restrictions, WTF? I haven't had anything to eat or drink since midnight last night and plan to keep it that way. I think someone forgot to write a few things down. How is it that I'm restricted for a gastroscophy but not a gj-tube placement?

The need to self-advocate never ends, but I'm okay with it if it means better care.

I ended up back in the ER the other day for dysautonomia, I managed to make it a month between visits so kind of proud...much better than the 3 times in 2 weeks last month. After the first time, I e-mailed the patient relations department with a link to my blog about how awesome the ER team was. Last week they let me know they sent the link to the ER department, which was pretty cool. The doctor who treated me this time, recognized me from my blog. Yep, he read it and I got to tell him what I needed, not the other way around...Epic Win!

"So you have Elhers....I don't know how to say it Syndrome and Dys-what?"
(Pretty much everyone who's taking care of me here)

Moving at warp speed: AFO's, surgery and life all at once

2010-10-19T21:37:00.000-07:00

Where to start....

Well, I've got my AFO's and they're awesome!
Originally, had wanted them to be short and hinged. When I went to pick them up, they were tall (or I guess standard size). The orthotist thought it'd be a smart idea to keep them tall and give 'em a try before cutting them down and loosing the option of going back. Stupid me, never really thought of that. I'm an impulsive and rather stubborn person. I get an idea and go for it without looking back. The idea behind keeping them tall, was to help with the knee hyper-extension. I put them on, stood up, and my knees hyper-extended. Scrap that plan, EDS had other ideas. I decided to give it a few days, sleep on it, and see if I could get used to them. Two days later, I was back getting a bunch of modifications. I had somehow managed to pull my calves, which is pretty much impossible. My legs are always tight, I'd love to be able to stretch them but I'm just too bendy. The only time they get a stretch or dug out is when I'm at the chiropractor and she goes in with the elbows. The fact that my legs were stretched and sore from the AFO's was not a good sign. We ended up cutting them down to the same height as my PUSH braces I had before hand. A bunch of padding got removed and some added to other places. I got the bottoms completely padded, along with some supports put in where my toes meet my feet. It was gross walking around feeling all the little bones slide around, they needed to stay in place. Now, I have some bad-ass AFO's. My ankles are stable, and I don't internally rotate my hip nearly as much. When I do walk with my leg turned in, I can correct it and maintain it. One of my friends noticed straight away how much better I was walking.

I only ended up with one pair of shoes that fit, and still have to part with 18 other pairs :(
Luckily, a friend went shoe shopping with me this weekend, and I came home with 2 new pairs. I'm glad she came with me, as I probably would have had a meltdown over shoes if she hadn't helped keep my head on straight. It only took 4 hours and a million fails, but we did it. The coolest part of this so far, is that I was able to walk around those 4 hours without any problems. Nothing really hurt, and I still had energy at the end of the day. There's no way I would have been able to pull that off before, my limit was about 1.5 hrs. So, even though they're bulky, hot, and sometimes bring unwanted attention, I.LOVE.MY.AFO's.

Surgery...that's happening in T-8 days. Yep, pretty soon I'll be able to "eat" anything nasty via gj-tube. I'm really excited at the thought of being able to avoid the following things: blocking my airway, insane reflux, vomiting, TMJ pain, and getting pneumonia from aspirating. 4 times in 3 years is enough for this girl. It should also help keep me out of the ER when the dysautonomia gets crazy. 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!

So far, the hospital seems to be taking this EDS thing seriously, and for that I am thankful. It's going to be really inconvenient and I'll probably go crazy from boredom at one point, but it's better than being neglected. I've got to go in 24hrs before to be admitted...They don't need to run any labs or tests since they have everything on file from my ER visits. No complaints about avoiding blown-out veins. I hope the nursing staff understand that I'm not a princess when I ask for 5 pillows, to keep my joints in place. I almost managed to give myself a little panic attack when I realized that going outside as I please, won't be an option. It's going to feel like jail. I need to be able to go outside, it's the one thing in life that keeps me sane. Maybe my friends can help me escape when they come visit.

I've been very fortunate to have friends offer their help with whatever I'd need. I've got one friend who's going to be my "person" when I'm in surgery. I'm going to leave her with a bunch of EDS info, and I know she'll advocate and raise hell if need be. I've got some other friends who are going to bring me some yummy, non-hospital, wheat-free food. Mmmmm. So far, it looks like my bases are covered from visitors, to food and everything in between. This weekend will consist of pre-cooking meals and getting everything together. I am determined to recover comfortably with minimal stress and good food. It's a bit ironic how I keep obsessing over food, when I'm getting a tube put in me because food isn't much of a friend. The one thing I'm not worried about (yet) is pain control. I know that if it can't be controlled with meds, which shouldn't be a problem, I'll still have my super-powers and juju coming from my friends.

The year seems to have flown by, and now I'm thinking about my plan "C" and what it will entail. It's a new beginning which I am very excited for, but it also means another end to something I love but have had to give up. I'm really going to miss my current job. There is so much magic that happens, and I've never gone a day without learning something. Every work day contains fun, discovery, mastery of a new skill, a good laugh and some of the most innocent moments life has to offer. I wish I could bottle the stuff that my work is made of, the world would be a happier place. I get paid to play, finger-paint, teach, eat ice cream, go to the beach and so many other awesome things. I have no interest in a desk job, none at all. Not only will I be sad to leave the kiddo I've been with almost every day for 2.5 years, but it will also signify that I have officially given up the last thing that was still on the "can do" list from before things got bad. Thanks EDS.

I'll have some pictures of the new bad-ass AFO's and body-piercing. I've already come up with some ideas to make the tube look cool, and if not, funny. Life is too short to dwell on the silly things, we need to find the fun and run with it.

P.S. T-2 days until I see the Dalai Lama. I'm going with a bendy friend, we scored accessible seating, a first for both of us, should be interesting. He's doing his talk on Approaches to World Peace. Sooooo excited. The place is going to be packed with juju and everything good!

When family can start seeing a chronic condition for what it is, and the person beneath it all

2010-10-10T22:07:00.000-07:00

This weekend was Thanksgiving way up here in Canada,eh!
I spent it at my awesome grandma's house with some of my immediate and extended family. I had a good time, but am glad to have things back to normal.

Usually spending time with family has meant overwhelming stress and anxiety. The idea of having everyone take notice and let me know how much worse they think I've gotten is always a blast. The looks of pity when I walk, lay on the floor, have a new brace, or pretty much anything else, isn't fun knowing they're directed at me. I hate having to answer "yeah, I can't do that anymore" to a lot of questions about what would have been a normal part of life, six months ago. I'm glad the visits to the ER didn't come up, and I was able to pretty much avoid the gj-tube conversation. That would have been the last thing I needed...I can just picture the conversation now "I'm getting a feeding tube put in my stomach because eating is a pretty big problem now". This time though, something felt different. Very different, and I liked it.

There was no pity, staring, questioning and insistence that I needed help when I didn't. After the last year of trying to get my family to understand EDS in all of it's glory, but with a positive outlook, I think they are starting to see it like it is. Or, at least like it is for me. It has taken a lot of e-mails filled with information, resources and many phone calls. My family is pretty tight-knit and we keep in touch pretty well. I've always been open and honest about the whole EDS thing, more than willing to answer any questions, and there have been a lot. I guess it's not everyday your niece or daughter ends up having some crazy-rare-genetic-condition. One of the hardest things for me to deal with was the constant comparisons between my twin sister and I. Nobody really understood why our bodies were so different (mine falling apart more than hers) yet genetically we are the same. I know there's been speculation about why it's just me "suffering" and that I might be looking for attention and whatever else. Yeah, furthest thing from the truth. My sister and I live life very differently, and it also means we deal with life differently. Yes, she also has EDS, and yes, she has a lot of the same symptoms and pain issues. No, she's not as open about it as I am, and our symptoms are different as well. This comes from lifestyle differences, and the fact that we've had our own lives for the last 9 years. Oh yeah, minor detail; there are very small genetic variances even with identical twins which mean huge differences to the outside world. A good example of this, would be with a set of identical twins who have different sexual orientations. The nature vs. nurture argument can easily be blown out of the water, the same goes with the EDS thing. Just because we're identical, it doesn't mean that EDS is going to present exactly the same with us. When I was at the conference I met a few people who are twins, and they've experienced the same thing in regards to differences in symptoms. That was so nice to know...I wasn't crazy it was happening to other people who had another half as well. I've always been sure to let everyone know that I don't do pity, I'm independent and it will not change. They are starting to understand that there's not really anything they can do to make symptoms better and that it's a completely different way of life. They know that I'll ask for help when I need it, and that making a big deal out of an ER visit isn't constructive for anyone. What I think it's coming down to is, something along the lines of acceptance, that although my body is broken and falling apart, I am not.

I feel like they are starting to see me for me again, and not the EDS as much. I hope they see the girl who instead of falling apart and giving up, is the girl who despite all the crap, is always finding a way to make something work. We'll take today for example, I was peeling potatoes. My hands are very bendy, which makes everything difficult. I used a peeler that was great for my grip it was nice and wide, but the handle included a little lemon zester. That meant the handle was a bit "sharp" if you have EDS. I quickly found a way to remedy that problem. Next came the task of getting out all the little nobs and little bits. Any normal person would use a paring knife. The idea of holding a wet, slippery potato in one hand and a knife in the other didn't sit too well with me. I had visions of cutting myself a million times to complete a simple task. I ended up using a little melon-baller and it worked perfectly. Both times I had someone say that they could do it, and not to worry about it. I'm glad it gave them opportunities to see how instead of giving up, or not even trying anything won't yield any success. But trying something new, might just work.

My parents are also learning that freaking out about this whole EDS thing, is a complete waste of energy and doesn't get anybody anywhere. They know that there are things I leave out, and that I down-play a lot, but if I'm not loosing it, then they shouldn't either. Hopefully, they see all of this regression is also producing a lot of other opportunities, and that life is super-unpredictable. So we need to ride out the crappy bits, and enjoy the finer things whenever possible. We've had the "I might need to move home if I get worse" conversation, but we've also had the "I'm not tied down to anything anymore, so I'm going to do what I want until I can't" conversation. I know they're crapping themselves over my plan "C", but they know that I'm happy with my plan and can't wait to make it happen. Between both discussions I think we've come to an agreement that with me, living life predictably is over-rated and making long-term plans is a waste of time. So, we deal with life as it comes, and live from one moment to the next. I wouldn't have it any other way.

P.S. My awesome friend Julie (my bendy friend's wife) made this video. Her timing couldn't have been more perfect. You may want to pass it on to your family and friends.

http://www.youtube.com/watch?v=2eINj83djQU

"Life just is. You have to flow with it. Give yourself to the moment, let it happen."

baby steps...

2010-10-07T21:22:00.000-07:00

Hello,
Happy Friday + Long Weekend!!!

I've managed to avoid the ER for the last 9 days and it's been wonderful.
Things in the land of Nicole have been a bit crazy, but when isn't it?

My neck is almost healed, it's still a bit crunchy, unstable and sore but nothing like it was last week. I'm not using my c-collar as it's painful, which is a good sign. This time around, recovery has been rather quick as the previous neck subluxes took 3 weeks and this time it was about 2 weeks. I think it may be like the rest of my joints in that the first bunch of times I injure something, recovery is a lot more slow. Maybe I don't really recover but somehow learn to adapt.

Dysautonomia....it's coming along...slowly.
I can handle about a meal's worth of food and 2 snacks in a day and that's about it for now. It's a huge improvement from before, when I'd go 24 hours without anything before I realized that I hadn't eaten. Anytime I do eat, I still feel nauseous and gross but at least it stays down. I still sometimes feel dizzy/faint and my heart is a bit funky still. Apparently palpitations and high heart rate are my new normal when I go to bed. I'm also better able to regulate my temperature. There have been major improvements in the fatigue department. I'm no longer dragging myself from bed to the couch and back again, and can almost function like a normal person (who has EDS).

Sleep, it's a work in progress.
The neck sublux and dysautonomia completely threw that off. I have a bit of hard time winding down and getting comfortable enough to fall asleep. It hurts my neck still, my heart goes a little nutso on top of the normal pain that keeps me up. It takes about 1-2hrs to fall asleep and I'm up between 3-5 am for a while. My room mate thinks I've been sleepwalking again as she found crayons in the middle of the living room floor, I say it's house trolls. I found out there's a family history of sleepwalking on both sides of the family. Awesome.

GJ tube is becoming more of a reality and getting closer. After the 3rd ER visit I called them again and asked if there was a way to get it bumped up. Well 8 days after, I've got a consult with the anesthesiologist. Kind of terrified that they won't know what to do with me, or will not take this EDS/autonomic stuff seriously and mess up (because it's happened). But am very excited to be able to push anything that tastes gross through the tube, along with avoiding pneumonia from aspirating. How cool would that be?!

I ran across this stat in last week's episode of Grey's Anatomy and did a little research. The odds of getting struck by lightening is 1/6,250 and the odds of having EDS III 1/5,000-20,000. I should start playing the lottery.

I'll have my new legs (AFO's) in T-5 more sleeps, and am going to see the Dalai Lama in 15 more sleeps! Take that negativity!!

"Duct tape is like the Force, it has a dark side, it has a light side and it holds the universe together."

So close I can taste it

2010-10-05T04:50:00.000-07:00

To be feeling human again, I'm so close.
It's been nice to be able to play my didgeridoo and sing at the top of my lungs again.

Although the last two weeks have been nothing but miserable, my recovery from the neck sublux has been rather quick. I had to wear my c-collar for about a week and a half, and it took about 8 days for the migraine to leave. For me, that's a new record. The previous two subluxes have taken more time to recover both lasting about 3 weeks. My neck is still crunchy and the muscles in my back and neck get tight but that's about it. Things are still a little unstable but it's gotten to the point that wearing the c-collar is uncomfortable (which is a good sign) and I'll take it.

As for the dysautonomia, things are progressing, just very slowly. I'm now able to eat and hold down a meal's worth of food and a snack for the day. I won't say it's easy to eat, because it's not. I get hungry but dread eating because I still feel gross after putting anything in my stomach. At least I can keep it down with only a bit of a struggle. That's huge considering I'd go 24 hours without food before I'd realize that I hadn't eaten. I never thought in a million years that I'd have to make myself eat, I love food. For the first time I think I fully understood what it was like to look at a plate of food, feel the need to cry. Yep, food can be overwhelming....weird eh? Knowing your favourite thing is sitting there waiting to be eaten, and all you can think of is how you're not the least bit hungry, even though it's been over 12 hours since you last put anything in your mouth. Or, how you know eating anything will make you want to barf no matter how good it tastes. Lastly, how consuming a normal portion of food seems like an insurmountable task with some major consequences.

My eyes have always been bigger than my stomach, but now it's become very apparent. On two occasions, I've gone out for Thai. Mmmmmmm my favourite thing in the world. I figured it would be a good motivator which it was, kind of. I'd order the usual spicy coconut soup (it's soooo good) and a main dish. Well, I can down most of the soup and about 8 bites of whatever else and that's it. After that, the thought of eating any more churns my stomach, but it's soooo good. The added bonus in all of this is that my grocery bill is a lot lower and I've got less dishes to wash.

In other dysautonomianess, my heart still likes to go all over the place, I still get the occasional bout of spins, feeling faint or like I need to jump out of my skin. The good thing is, that I don't feel like death anymore and haven't dragged my body from the couch to bed and back in a few days. My naturalpath suggested trying a greens vitamins powder mix to at least keep my body going with that. It tastes pretty gross, and mixing it with juice is a must, but my body was very happy to have some vitamins. I know that if I don't eat enough fruit or veg. my body starts to turn on me, I feel gross, get very cranky and will demand vegetables at any cost. Strange, I know.... That greens mix is currently my best friend. It also dissolves pretty well which will be nice for when I finally get the gj-tube.

Speaking of which... I called the GI specialist's after the 3rd ER visit to see what they could do. They've already got the ball rolling, and I've got a consult with the anesthesiologist soon (no actual date yet) then they can go ahead and put the tube in. In a sick and twisted way, I'm so excited to get it in, it will make life so much easier. I feel like a kid in a toy store, with thoughts of not having to chew up and swallow anything that tastes gross. I can just put it through the tube!

T-8 days until I get my new "legs" or rather AFO's!!! I'm really excited to be able to walk and stand with everything in it's place and not stretching the crap out of the tendons and ligaments. The only thing that makes me a little nervous is having to adjust to another brace, and dealing with even more gawkers, or people who will feel the need to tell me that jesus loves me or some crap like that. Ya know, cause I'm the poor disabled girl. I know they have the best intentions at hand, but doing that is ignorant and rude. I'm sure they'd be offended if I told them my pretty liberal thoughts about the world. I bet if I were a visible minority, nobody would say anything like that to me. I guess the other thing I'm not excited about is having to look in the mirror for the first time with the AFO's on and get a smack in the face with reality, knowing that it's not something temporary like all my other braces . Just another piece in the acceptance puzzle I guess. Getting rid of my current shoes, and having to find some new ones wont' be fun either. Options are already limited, so trying to find something that will work with huge hunks of plastic and metal will be a major undertaking. I've got some friends who said they'd come find shoes with me which is most awesome of them. I just hope I don't have a melt-down in the store when I see a pair that I love but can't wear anymore. The stupidest things set me off.

I'll just throw this in here, because it's rather interesting. One of my friends who worked with me, just got diagnosed with Loeys Dietz Syndrome. When we were working together, we both knew something funky was going on with our bodies and it strangely ended up that we both have a connective tissue disorder. This is what kind of makes me laugh. The odds of having a EDS III are 1/5,000-20,000. The odds of getting stuck my lightening are 1/6,250. Seriously?! I got the idea for this statistic from watching Grey's last week with my bendy friend. One of the characters pulled out the stat. of getting struck my lightening, we both looked at each-other and laughed. I looked into it and yes, the odds of getting struck by lightening could potentially be higher than ending up with EDS type 3.

" When written in Chinese, the word "crisis" is composed of two characters. One represents danger, the other opportunity."

Three good things...

2010-09-30T13:59:00.001-07:00

I hope this post will be really interactive. I'm curious where my blog readers are coming from, and would like everyone to put in their two cents. The last two weeks have been nothing but hard, exhausting and gross. What I find helps, is to focus on the positives in each day. There are always at least three good things that happen to us before we go to bed, and that in itself is a small victory in a horrible day.

My three good things for today:
1) Got out of the house to get some yummy food (that I hope can be eaten), scored some new pen/pencil grips, supplements and vitamins drink for plan "D" to stay out of the ER.

2) It's a beautiful day and everyone is out. It's nice to see so many smiling people enjoying the little things life has to offer.

3) Grey's is on tonight. One of my bendy friends is coming over to watch, and we're going to chow down on ice cream :)

What are your 3 things ?
Don't be a stranger....

"Life does not have to be perfect to be wonderful"
(Annette Funicello)

ER visit # 3 in 2 weeks, Holy annoying Batman!

2010-09-29T22:40:00.000-07:00

Guess what I spent the afternoon doing?
Guess what they gave me?

I think today was a result of having a subluxed neck (slowly recovering) and dysautonomia issues at the same time, both are hard to bounce back from on their own, combined appears to be a recipe for disaster.

I thought after Friday's fiasco, that I was all sorted with some new natural liquid add-in electrolytes, and spending the entire weekend in bed. Nope.
I did improve and felt like I was on my way to feeling human again, but when I woke up this morning after sleeping 10hrs, I felt like death.

Yesterday I was able to hold down a meal's worth of food and about 2.5L of liquids.
This morning, not even the electrolytes would stay down, my heart was a little nutso any time I changed positions, dizzy, sweaty, on and on...dysautonomia.

Got 1L of fluids and 50mg of Gravol(IV)
Blood work came back normal (surprise!!!, they never believe me that it's dysautonomia and not some crazy bacteria)

Was a pretty successful trip, didn't have to fight with stupid dr's, didn't need to chew up any gross meds, scored a bed right away and.....I got to take out my own IV, it made my week :)

I got the usual "Well since you know more about this than I do, you know when you need to come back for fluids..." and was discharged.

Funny enough this morning, the GI specialist called to say that they've bumped up the gj-tube surgery (no date yet)...I'll be calling them again to see if they can move it up sooner. Just think...I can push fluids through my own tube and avoid the ER all together.

Dysautonomia has slammed the EDS community this past month. Almost everyone I know, in person and online has been in the hospital or ER because of it. I was on facebook chat this morn. with one of my very close bendy friends who's stuck in the cardiac ward of John Hopkins with POTS. They can't figure out what to do with her :( If it weren't for social networking, and us being pro-active we'd probably all be dead by now. Thank you Facebook

http://www.youtube.com/watch?v=CmyUkm2qlhA

For all by bendy friends who's asses are being kicked with POTS and whatever else, Just keep swimming and fight like hell.

2 ER visits and 1 subluxed neck in 10 days, I'm on a roll!

2010-09-27T07:57:00.000-07:00

EDS has been kicking my ass, so in the spirit of feeling like a million dollars:
This will be another edition of copy+paste e-mail that was sent to my awesome natural doctors.

As a heads up, this e-mail isn't filled with sunshine and lollipops...instead sarcasm, which is sometimes even better.

So in the last 10 days I've managed to sublux my neck and end up in the ER twice. I'm on a roll.

Yes, you read it right...I went to the ER again on Friday aft.
Despite trying pretty much everything, the killer migraine from my subluxed neck had gotten a lot worse by day 4 and I was pretty much incapacitated.
I was attempting to get ready to go into work for 3hrs, and didn't make it that far. The dysautonomia started acting up like last time, except my HR would go crazy any time I changed positions. It took me 4 hours to grab a shower and get dressed...I kept having to lay down and take breaks. It was like having the worst hangover of my life x's 10.

Before I decided to go, I talked to a few EDS friends to make sure I wasn't being a hypochondriac about it and was glad to know that I was pretty sane. Only one bendy friend said she wouldn't go, but then when I re-phrased the question, and asked her if she'd go if she were living in Canada where she wouldn't have to pay $15,000...she told me to go. Thank you Canadian health-care.

I went in with my last ER report and some of the dysautonomia info from the EDNF conference...They got me started on fluids right away, and some other IV drugs that were suppose to help with pain and messed up stomach. I asked for the IV to be put in my hand so I could move the rest of my body to avoid dislocations, and the nurse put it in my wrist. Hahaha my wrist started dislocating after 15 min, and I couldn't put it back in because of the line. Awesome. They were also out of beds, and didn't really understand no matter how I explained it, that sitting is the worst thing I could do for myself, and it would affect my entire body. They thought since my neck was supported with my brace that I was fine...So I spent almost the entire 6hrs in a chair and being moved from place to place. I wasn't allowed to lay on the floor either :( The pain meds didn't really do anything, and all that sitting made it worse. My super-powers were getting low and it got to a point where I ended up crying because everything hurt so much. This girl doesn't cry over pain, and hasn't since age 6.

My ECG came back normal, but I think it's because they had me laying down for about 15min before they did it. Right after I got up, my heart went crazy again and anytime I changed positions after that. I let them know but who was I kidding, I was just a patient.

The dr. was a bit of an ass. I'll give him 50 points for knowing the basics of EDS, but other than that he was useless and wouldn't listen to me. He didn't know anything about autonomic disorders esp. with EDS, and wouldn't let me explain, or read any of the info I brought because he had a god complex. He then tried to refer me to a rhumeatologist after I told him they would be useless to me and that I've gone the natural medicine route.He thought I needed x-rays of my neck, after I told him they'd come back normal, just like the millions of other x-rays, and scans I've had. Guess what? They came back normal, surprise!!! He said there wasn't really anything he could do, didn't know what to do, and sent me on my way when the fluids were finished. He did say that the gj-tube was a good idea and would help a lot.

So.......I ended up leaving in worse shape than when I went in....awesome.
As far as meds, I know they gave me Gravol (IV) and Advil (in a yummy pill that needed to be chewed and swallowed).
I have no idea what the other two IV meds were, I can't read the dr's writing on the report. They were kind of useless anyway.

2 days later, and I still don't want anything to do with food, I'm not hungry at all, but am forcing myself to eat. Never, thought I'd say that...
My neck is still crunchy, feels unstable and I'm on day 6 of migraines (which is finally starting to feel a bit better).
That awesome new sleep pattern that we just got started has been thrown out the window. I've been wide awake at 4am for the last two nights. Gotta get back on it...

The one benefit of that epic failure of an ER visit, is that I'm going to use it as ammo. to get the gj-tube surgery moved up asap. At least when it's done, getting fluids, electrolytes and food in me shouldn't be a problem, and the ER visits will hopefully be non-existent.

I'm not sure if it's the weather change, but EDS and dysautonomia has been horrible to a lot of my bendy friends lately. There needs to be a way to do body transplants...one day...

That was written on yesterday afternoon. As of now, I still have the migraine/crunchy/unstable neck and am still "POTSy". Who need to run the track, when you can just stand up and get your heart pumping like mad that way. Running is over-rated.

"To be kind, honest and have positive thoughts; to forgive those who harm us and to treat everyone as a friend; to help those who are suffering and to never consider ourselves superior to anyone else; even if the advise seems rather simplistic, make the effort of seeing wether by following this you can find greater happiness."
(Dali Lama)