Sunday, June 12, 2011

The pain in my......

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:


  1. You're always in my thoughts, cutie. I'm glad you've found something that helps with your pain. We all have to find our way through this condition which ever way we can. When it comes to my UCTD, big pharma is my best friend. Without it, I wouldn't be able to type you this right now. I am glad you are doing what you have to to improve your life.

  2. this post made me want to cry. i totally know what youre going through. doctors and nurses dont quite believe me when im inpatient. finding a dr to give you rx or referrals is tough enough, finding one that actually knows about eds is a godsend.
    i had a sinus surgery that turned into an almost death because of bleeding thing, but of course the drs dont think eds has anything to do with it. :/
    god bless, and fuck EDS

  3. *big virtual hugs sent your way*

    My mom finally started taking narco's, after just living with advil for years and years and years. She doesn't need much, and she primarily is only taking it to sleep, or on a really bad day, but they are good for when you need them.

    My biggest problem with them is I react horribly to them all. T3 gives me an AWFUL headache, usually worse than whatever pain I have. Vicodin makes me puke, 99.9% of the time. Percocet gives me a horrible headache, and makes me really nauseated, but I usually just pass out right when those things start kicking in so thats my narco of choice if I really need them for something and unlike codeine, i don't usually wake up with the headache..

    best of luck to you girly, my prayers are with you!

  4. In the last year, I've been trying to get a lot of the things you have to help make life a bit more tolerable (braces/splints, feeding tube, fluids, etc). I have a new rheumatologist who I'm hoping will make some of this happen for me after everyone else has said the most heinous 4 words over and over: you're not sick enough. (some like to get creative and tell me I'm too young too...I don't actually understands what that means. I can only have a disease - or ten - if I'm old?)
    Anywho, I'm glad you got your fluids at home minus the TPN. And that you found a surgeon who will do your Nissen. I almost had one done a few years ago, then they took my gall bladder out instead. When I still got sick afterward, more doctors and research and the decision that I had another disease that would not benefit from the surgery. And now I'm glad we didn't do it because if I had a G-tube, it would be useless - my stomach is digesting less and less every day, and supplements and shakes and pretty much anything with protein or fiber in regular amounts are out (which is why I'm still pushing for the J-tube...because the problem primarily resides in my tummy, not further down).

    Sorry you had scopalamine from hell. That stuff is really nuts. It's great for some people, but it just has some super horrid (and really nutso neuro) side effects. To me, Zofran is about as useful as bendy joints. Most of the other top contenders are out for me as well (I'll take phenergan if that's what the options are down to, but it make me pretty zonked, and I will NOT take Reglan because it gives me IBS...which is so much fun when you already can't get out of bed). I've learned that Ativan and Klonopin are great heavy hitters (though getting a regular order for them will take some finagling since they're controlled....but I have a GP and rheumy who are more than happy to share with me :D ).

    I'm glad you have your chill time and your bendy posse time. That makes all the difference in the world. For me, when I chill, it's not so much the breathing that I focus on (though that is part of it), but more this image in my head that I focus on: I imagine that with every breath I'm watching fire leave my body and bright blue ocean replacing it in soft waves. It started as just thinking of the ocean (because I'm a diver), and morphed into that. That's my magic right now.
    And I've seen you post about time with your bendy posse enough that I'm going to start searching for EDSers in my area, because I'm determined that would make me feel better than anything. I mean, my best friend here is a nurse, so she's cool, but at the same time, nobody really gets it except for other EDSers. So you have been my inspiration, Nakki!!

    ::gentle hugs and good juju:: Feel well! As much as humanly possible every day!