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!!
Showing posts with label stupid things people say. Show all posts
Showing posts with label stupid things people say. Show all posts
Saturday, July 9, 2011
Tuesday, May 3, 2011
The gong show that is EDS, and the exhaustion that comes with it
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.
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"
Wednesday, February 9, 2011
When you're neglected by a gastroenterologist...
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.
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)
(Elanor Rosevelt)
Monday, December 13, 2010
Plan "D" to stay out of the ER and other babble
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.
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.
Monday, November 29, 2010
Three Good Things 2nd edition
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.
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.
Saturday, November 20, 2010
A lot of firsts, and Clothes & braces part 2
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.
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!!!"
"The muffin man?"
"The muffin man!!!"
(Shrek)
Tuesday, October 5, 2010
So close I can taste it
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.
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."
Monday, August 16, 2010
Three words that are often ignored
There are three words that are important, often ignored and are a sign of good things.
These words are: I'm fine, thanks. It seems so simple, but it is often over-looked.
I went out to a movie with my friend last night (Scott Pilgrim vs. the world='s awesome!), and took the wheels. I had a lot of obstacles to get through because the city isn't really all that accessible. Regardless, I could make it on my own no problem. There were a lot of people who asked if I needed help, which is lovely to think about it. I'm glad I live in a city where people look-out for each other, I see it everyday. What drives me absolutely insane is when they offer help, I tell them "I'm fine, thanks" (with a smile) and they still try. It usually comes in the form of questioning, or them physically trying to help me maneuver. Even when I pull out the "I promise, I'm fine thanks" in a firm tone, they still seem to ignore it. Maybe I should start barking like a dog, and embarrass them instead. It was really hard to contain my anger and frustration. I did it because I don't want to burn any bridges for other people who would need and appreciate the help. Just because I've got wheels, or it appears that I might need help it doesn't give ANYONE the right to ignore me, invade my space and not trust that I know what I'm doing. On the flip side of that, there's feeling like a burden. I know I'm not a burden, it's all perceptive. I don't think many people realize how important independence is. It got to the point where I was about to have a little melt-down on the subway platform waiting for the train. This is coming the girl that doesn't really cry, and never cries in public. Ever. And then, there were people saying "God bless you", WTF?! Seriously?! "Oh, that poor girl in a wheelchair"... give me a break!
Today I was talking with a friend who's been trying to convince me to try this new treatment for a while now. There are three reasons why I haven't tried it yet. The first being money, getting the other treatments makes me broke, but they're essential so going without isn't really an option. I also needed to learn to process and accept EDS for what it is, and learn to live differently. The last reason is why I pretty much lost interest today. I know my friend is trying to get me to do this out of concern, but when I feel like I'm being lectured or have to defend my choices, I stop trying to like the idea. It didn't help that I was told that the reason for my wheels is from me getting the chiro,acupuncture and Active Release treatments. Forget the fact that EDS is degenerative and that according to the specialists at the conference, I'm doing everything right. I don't want to have any part of a treatment model that does not involve a multifaceted approach, or puts blame on other treatment providers that have been nothing but effective for me. I pointed out that I was getting frustrated with the conversation and where it was going but I'm not sure I got the message across. 2/2 days where I've felt the need to cry about it. I'm on a roll!
Just after that, I had a friend message me on FB to tell me a story about how they gave up their seat on the bus for someone who had crutches and braces, and how they were doing their part for the differently-abled. Ummm how exactly was I suppose to respond to that? "Do you want a cookie?". Do we really need praise and acknowledgment for being conscience of other people and their potential needs, also for things that we should do everyday anyway? As if being aware you're someone contributing to the universe, isn't good enough. Cookies for everyone!!! I think I should start giving out gold stars.
I'd like to thank my friends who respect my decisions, and let me do things as independently as possible, even if it drives them crazy.
Back to those three words... "Im fine, thanks"
There are good things about it. It shows independence, which is hugely important for us and just about anyone else. It shows we can handle things as they are, and personally, I find that empowering. Lastly, when we're fine, we're not in agony and that my friends, is priceless.
Today I was talking with a friend who's been trying to convince me to try this new treatment for a while now. There are three reasons why I haven't tried it yet. The first being money, getting the other treatments makes me broke, but they're essential so going without isn't really an option. I also needed to learn to process and accept EDS for what it is, and learn to live differently. The last reason is why I pretty much lost interest today. I know my friend is trying to get me to do this out of concern, but when I feel like I'm being lectured or have to defend my choices, I stop trying to like the idea. It didn't help that I was told that the reason for my wheels is from me getting the chiro,acupuncture and Active Release treatments. Forget the fact that EDS is degenerative and that according to the specialists at the conference, I'm doing everything right. I don't want to have any part of a treatment model that does not involve a multifaceted approach, or puts blame on other treatment providers that have been nothing but effective for me. I pointed out that I was getting frustrated with the conversation and where it was going but I'm not sure I got the message across. 2/2 days where I've felt the need to cry about it. I'm on a roll!
Just after that, I had a friend message me on FB to tell me a story about how they gave up their seat on the bus for someone who had crutches and braces, and how they were doing their part for the differently-abled. Ummm how exactly was I suppose to respond to that? "Do you want a cookie?". Do we really need praise and acknowledgment for being conscience of other people and their potential needs, also for things that we should do everyday anyway? As if being aware you're someone contributing to the universe, isn't good enough. Cookies for everyone!!! I think I should start giving out gold stars.
I'd like to thank my friends who respect my decisions, and let me do things as independently as possible, even if it drives them crazy.
Back to those three words... "Im fine, thanks"
There are good things about it. It shows independence, which is hugely important for us and just about anyone else. It shows we can handle things as they are, and personally, I find that empowering. Lastly, when we're fine, we're not in agony and that my friends, is priceless.
"Someone's opinion of you does not have to become your reality"
Wednesday, June 23, 2010
Thoughts on wheels
After reality had pretty much smacked me in the face, I had to start making things happen in order to make life work for me. I can't really say I'm someone who cares about quantity, I'm all about quality. I'm sure working in the field that I do, has given me a viewpoint that not many people get to see. I play the therapist role at work, but I also understand what it's like to live in a body that doesn't work. This gives me a rather unique perspective, which I am thankful for. It allows me to turn on my therapist brain, look at my situation and find ways to increase my independence and come up with multiple back-up plans to make it work for me. It also has given me resources that I could not otherwise access without a lot of research and work. Those resources are my friends. We work together, and we play together.This means they see the girl who can kick some serious ass at work, and the girl who spends a lot of time in bed and not being able to participate in life. In doing so, they have been able to turn on their therapist brains and give me input that otherwise would not have been possible with any of my doctors.
I'm now in the process of getting some new wheels. It's not the kind that we all wish for, it's a wheel chair. I'm not sure how I feel about the whole thing yet. I'm looking forward to being able to participate in life more, and have something to make life easier with injuries and bad pain days. But really, who looks forward to getting a wheel-chair? I don't think many of us as children or even adults had visions of ourselves in a wheel-chair. Even last year, it wasn't a thought that even crossed my mind. I was at the climbing gym, paddling and being insanely active. I'm going to have to learn how to live with more stares, ignorance and places that aren't accessible. It will require more planning, patience and a positive attitude. What makes me more anxious than anything, are the inevitable times when I'll run into someone I haven't seen for a while. Having to explain EDS and what it does to me gets tiring. Especially when I get told things like "You were fine before, why is this happening now?" No, I wasn't fine before. 14 years ago I was starting my little journey into the world of EDS with many, many bumps along the road. I find myself having a lot less patience for people who think they're doing me a favour by giving me their pity, claims to understand what EDS is like because they sometimes have a sore knee, or unwanted advise like getting some x-rays done. You know, because I never thought of that. It would fix all my problems!! Haha I've had so many x-rays and scans that I'm probably a bit radioactive by now. That's why my toes always glow when I'm somewhere dark. To be honest, I'm just not looking forward to the wheels at all, at least not yet. Yes, it could signify a new beginning,but for now I'm seeing a lot of things ending. Why do transitions have to suck ? I think it's time I invent some kind of extreme wheelchair something or other.
Those are my jumbled thoughts for now, maybe during the night I'll come up with a brilliant plan that involves a hover-chair. Now that would be cool! Writing these posts when I'm a little more coherent would probably make some sense too.
For now, this awesome video will have to suffice.
http://www.youtube.com/watch?v=SmSl49bTI1A&feature=related
I'm now in the process of getting some new wheels. It's not the kind that we all wish for, it's a wheel chair. I'm not sure how I feel about the whole thing yet. I'm looking forward to being able to participate in life more, and have something to make life easier with injuries and bad pain days. But really, who looks forward to getting a wheel-chair? I don't think many of us as children or even adults had visions of ourselves in a wheel-chair. Even last year, it wasn't a thought that even crossed my mind. I was at the climbing gym, paddling and being insanely active. I'm going to have to learn how to live with more stares, ignorance and places that aren't accessible. It will require more planning, patience and a positive attitude. What makes me more anxious than anything, are the inevitable times when I'll run into someone I haven't seen for a while. Having to explain EDS and what it does to me gets tiring. Especially when I get told things like "You were fine before, why is this happening now?" No, I wasn't fine before. 14 years ago I was starting my little journey into the world of EDS with many, many bumps along the road. I find myself having a lot less patience for people who think they're doing me a favour by giving me their pity, claims to understand what EDS is like because they sometimes have a sore knee, or unwanted advise like getting some x-rays done. You know, because I never thought of that. It would fix all my problems!! Haha I've had so many x-rays and scans that I'm probably a bit radioactive by now. That's why my toes always glow when I'm somewhere dark. To be honest, I'm just not looking forward to the wheels at all, at least not yet. Yes, it could signify a new beginning,but for now I'm seeing a lot of things ending. Why do transitions have to suck ? I think it's time I invent some kind of extreme wheelchair something or other.
Those are my jumbled thoughts for now, maybe during the night I'll come up with a brilliant plan that involves a hover-chair. Now that would be cool! Writing these posts when I'm a little more coherent would probably make some sense too.
For now, this awesome video will have to suffice.
http://www.youtube.com/watch?v=SmSl49bTI1A&feature=related
"Obladi Obladah, life goes on...."
(The Beatles)
(The Beatles)
Monday, March 22, 2010
Sometimes I wonder…
Sometimes, I wonder how much people actually believe what I'm saying. I know having all these awesome symptoms and injuries sound really far-fetched.
Take last week for example, it just got crazier as each day went on. It started with one of my ankle braces coming apart. I walk with my right leg turned in, to avoid subluxing my hip. Doing that puts more pressure on my ankle, which is what I think was a big factor in my brace falling apart. Anyway, I thought I had the brace temporarily fixed with some super-glue, and the pain in my ankle would subside. I was wrong. Then, I decided that maybe taping my ankle like I used to do before the braces would help with stability. Wrong again. It didn't do anything, and I ended up with a lovely rash from the tape. Apparently your skin doesn't forget those things. I knew I had to do something, because it was getting increasingly painful. Just a quick note: I have a ridiculously high pain tolerance. If something is hurting, then there is definitely something wrong. It has taken me years to learn to listen to my body.
On Thursday, I went and got some new crutches that actually fit; taking pressure off my hip and ankle to allow some time to heal made sense. I was trying to be smart about it and give my body a break. I picked up the crutches before heading to work, and thought I could continue on my day as normal. You're talking to the girl who has always found ways to make things work with subluxed hips, neck, dislocated shoulders, you name it. Boy, was I wrong. I rely on public transit (bus, subway, and street-car) to get around when I'm not on my bike.
EDS + crutches+ TTC ='s a nightmare!!!
To start, not all the subway stations are accessible. Half the time, the escalators are broken. This week they were broken. Being the genius that I am, I temporarily chose to forget that I have EDS and to just do things I like I used to. That meant, hopping up and down the stairs on one foot, with a back-pack and crutches in hand. This also meant that I didn't think about what using crutches would do to the rest of my body. Well let me show you a little mind-map.
EDS+crutches='s subluxed wrists-> dislocating shoulders-> bruised arm pits -> really tight muscles in entire upper body -> pulling almost every muscle from the waist up -> couldn't lift my arms 20 degrees w/out pain-> breathing was painful. At least my hip and ankle were feeling better...
That meant, on Friday I was in NO shape to work. Fair enough, I'd deal with it.
Later that day I went to the chiropractor so she could give me some acupuncture and put me back together. I left her office feeling a little better, and knowing that in a couple of days I would be fine. As I was getting on the subway to go home, I slipped in someone's spilled drink and subluxed my hip. I.WAS.NOT.IMPRESSED.
With all of that said, it sounds very fishy and I'm not so sure I'd believe it myself.
Quite frequently, I forget that not everyone is stuck in a body like mine, I know it sounds strange.
This, brings me to wonder what people really think about this whole thing. I often feel like no matter what I say, or do; everyone thinks I'm full of crap and am looking for attention. I wonder what people think when I am invited to do something and decline because of my body. It's never that I don't want to do something with them, but it's that sometimes it's not worth the pain. There is always a painful consequence for all of my actions. I don't ever want to be the person to just complain about things, I'm a person who does something about it. However, there is only so much one person can do. Also, with EDS there's nothing I can do about it other than just manage things as they come up. There is so much that I choose to leave out, and don't talk about. Everyone doesn't need to know that I feel like ass everyday of my life with varying degrees of pain and how exhausting it is. They also don't need to know exactly how much it affects my body, and every single one of my decisions. I think with all the people who know me, very few actually know how it affects me. I try to keep it to myself, because I focus on the positive, it's the only way for me to get through some days. Even with doing that, I know it has affected peoples perceptions of me. I've been told that I'm letting it get in my way, that I'm making a big deal out of nothing, that I was born with it and it didn't just happen to me so I should deal with it better blah,blah,blah.
I've tried to somewhat educate my peers, friends, co-workers etc. on EDS and how it affects me. I keep out the details, and have provided some info for them to read if they want. What gets me, is that even with all of this I don't know how many of them have taken the opportunity to learn. For the most part, and I'm assuming here… they think it just makes my joints dislocate and sublux. I wish it were that simple. I don't want to shove it down anyone's throats, or constantly remind them that I'm stuck with this. The very last thing I want to be is a nuisance and that's exactly how I'm feeling. Blarf! I feel like the friend that no matter what you do or say, you can't help with any of it. I don't want to have anything to do with that. All I want, is for the people who know me to spend maybe an hour, to do some reading and understand that is a reason for what I choose to do, or don't do. Like I said in my last post, the very last thing I want is pity. I just want to be understood that's all.
What I dislike most about EDS is it's exhausting in every possible way.
Physically, waking up and going to sleep with constant pain takes a lot out of you. I try to keep active because it helps distract me from the pain, I need to be moving, and it is part of what keeps me happy. I would like to be able to run on 4hrs of sleep again, but I need about 10 to not feel so gross in the morning have a productive day. I don't even want to start on how much dislocations can take out of you, it's not fun. Mentally, I need to be distracted all the time with something else so I don't think about how much my body hurts. I have to be hyper-vigilant of my body and my surroundings in order to attempt avoiding injury. I have to constantly have a plan "A", "B" and "C", because we all know that life happens and you need to be ready. Emotionally, ha-ha..I could go on for hours. I don't often think about what I can't do anymore or what I could be doing but when I do, it hits me like a ton of bricks. For the most part, I have a positive attitude about it, but some days can be really hard. Some days I just want to crawl into a hole and never come out. Those are the days that I hate the world. It doesn't happen often but when it does, I like to just shut down and have nothing to do with anyone. Apparently those are the days when I just need to "be", and do it alone. I sometimes grieve for my past, and for my future. I've had do give up a lot of really amazing opportunities that I have worked hard for. I believe that in life, whatever you are given, you have a choice on how you're doing to deal with it; which in theory is great.
It's not so great when you don't like your options, and have to find a way to make them work. I have developed a lot of trust issues with doctors and specialists that practice western medicine. I've learned that even with advocating for myself, providing literature and physical evidence that still you won't always be believed or are viewed as a difficult patient. Here's where I think things get mixed up. Maybe they forget that the diagnosis and the patient are two different things. Yes, the patient has the diagnosis, but they certainly did not choose it and are trying to make the best of it. When so much of your condition is unknown and there is little information on it, doctors can be very inpatient. I think the golden rule of treating others how you would want to be treated is often lost. It's something that is so important to a patient who has so many things against them; whose goal is sometimes to just make it through the day without having a melt-down. Since being diagnosed, which took 12 years; I have never once looked for a cure. I know it's not possible right now and don't expect anything close. I want to be listened to, nothing else. Who knows, it may make them a better doctor if they practice it.
One of the many reasons I go to a natural path, chiropractor and acupuncturist is that these are the people who listen to me. No one has to agree with me, but they listen and that is vital. They have done the reading, and are careful to take EVERYTHING into consideration, not just the symptoms. None of them have thrown their hands up in the air and given up on me; they are always willing to try something new. We all know that you can't get anywhere by giving up. I have found for myself, that taking this route has provided me with more relief from symptoms than anything else. No pill has ever been able to do any of what has been accomplished naturally, and that speaks volumes. What makes me appreciate natural medicine more than anything is that there is hope. We know that EDS is genetic and nothing can be changed about it. But, we hope that with a lot of work, paying attention to details, and trial and error living with EDS can be better. What more could one ask for?
So that's my long-drawn out rant for today, more to come later.
Tips on LIVING with EDS
Don't use crutches…nothing good comes out of them.
Keep in mind that everything is a choice, even if you don't like your options.
Don't be afraid to just "be" if you never have a bad day, then something really is wrong.
Keep trying new things until you find something that works for YOU.
There's nothing like sleeping in until lunch and having pajama days.
On a bad pain day, be sure to do at least three things you like, it helps with pain.
"If you're going through hell, keep going"
(Winston Churchill)
Don't use crutches…nothing good comes out of them.
Keep in mind that everything is a choice, even if you don't like your options.
Don't be afraid to just "be" if you never have a bad day, then something really is wrong.
Keep trying new things until you find something that works for YOU.
There's nothing like sleeping in until lunch and having pajama days.
On a bad pain day, be sure to do at least three things you like, it helps with pain.
"If you're going through hell, keep going"
(Winston Churchill)
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