Tuesday, May 11, 2010

It's been worth it!

It has taken me a long time to get to where I am now.
Through the past 13 years of finding my diagnosis I was told that I was looking for attention, nothing was really all that wrong, and I was a hypochondriac. Then I found EDS and my whole world started to change. I no longer felt lost in the medical world, and pieces of my crazy puzzle began to fit together. Everything finally made sense as my body slowly fell apart. It started out with dislocating shoulders, joint pain and two doctors. I had GP and an orthopedic surgeon. With a diagnosis and a TON of work I have a great team of people who consist of the following: Geneticist, Orthopedic surgeons, sports medicine specialist, cardiologist, gastroenterologist, speech and language pathologist, brace specialist, physiotherapists, massage therapists, acupuncturist, chiropractors and a natural-path. There are a few others in the mix as well.

Getting all of these people on the same page wasn't easy. Natural medicine seems to be very misunderstood and lacking in the respect it's getting. My choice to go to natural medicine was an easy one, and was one of the greatest decisions I've ever made. Before I was officially diagnosed, I got a lot of flack for going the natural route. Even after trying a boat-load of medications, joint injections, seeing countless doctors there was little faith in it. My entire world changed after seeing the geneticist for the first time last year. They (geneticist and genetic councilors) were the first people I met who knew what EDS was (obviously), but they truly understood everything it involved. It was the first place outside of natural medicine that I was listened to, believed and essentially understood. I came in armed with copies of my files, a ton of research and ready to advocate for myself. The greatest thing was that I could finally let my guard down, they knew why everything was happening to my body,and I finally didn't feel like I owed anyone an explanation. Lucky for me, I got referred to a really good GI specialist, and cardiologist. Both of them are working with me in my goal to keep away from medications and chemical grossness. They don't completely understand it, but accept it for what it is and that it has had a very positive impact on me. "She is on a number of homeopathic and natural remedies, which include calcium-based products, iron-based products and a few other things that are not clear to me." (consult notes from GI specialist) I love his honesty, that he isn't resistant to it and has let me call the shots.

I was back at the geneticist yesterday for a follow-up and another test. The DNA tests to rule out classical EDS came back negative, but they wanted to do a skin-biopsy to see what that showed. I know it won't change anything, except maybe the type of EDS. When I was there last year, I had already decided that I wasn't going to have my own children, and didn't want anything to do with all the risks involved. It didn't seem to go over well with the geneticist who thought I was making a bad decision. After discussing it rather intensely we agreed to disagree. He essentially wanted me to know all my options, and I guess wasn't expecting someone who already had a decision. This time around, they wanted to know if there was anything else I wanted help with. They suggested a pain clinic, which I wasn't too sure about in the beginning but found out that I'd meet other people who "get it". I got up the courage and asked to see a female OBGYN (yeah I'm sure you all wanted to know that) but there's a reason... I want my tubes tied ASAP. No bendy children for this girl! I thought I was going to get a lot of resistance this time but there was none. I know this does not guarantee me anything but it's a big step in the right direction. I'd like to think my being insanely pro-active and doing research had something to do with it. I also have the option of getting more referrals to even more orthopedic surgeons but I'm going to avoid seeing them as long as possible. I have major issues with orthopods'...I kind of hate them and already see enough doctors as it is.

On another note, that neck issue is still going strong, but seems to be getting a little bit better each day. I've been to the chiropractor, acupuncturistx2 and had a massage in the last week. When I goofed my neck like this last year, it took me about a week to get help for it and recovery was a long road. This time I decided to try and be smart about it, and it's been working. I don't like spending my b-day weekend in bed (the weather was gross so it worked out), and missing work but it's all about the baby-steps. I'll be making up for the lack of a b-day later on, and will party like it's nobody's business! Ice-packs and my neck brace have been my best friends. My acupuncturist introduced me today to these amazing Chinese medicine patches used for muscle pain. They're on the stinky side, but the greatest thing in the world!

I got to meet another bendy friend yesterday and I don't think I'll ever get tired of it. She had a pre-op appointment at the same time I was meeting with the geneticist. We figured it would be a good idea to meet after our appointments and vent, because they're usually crappy. She's a super-cool girl, and we had a ridiculous amount of things in common. Sadly, a lot of it was all the negative things that EDS has done to us. It was also very nice to feel comfortable enough to let my guard down and just talk about it. I think at one point we were both about to cry while eating dinner, but it was nice. There wasn't any judgment, or stupid comments about not being positive enough. We went out for tea after wards and both of us literally sunk and melted into the chairs. Our bodies had enough and were worn out, we knew the other person was feeling it too and didn't have to say anything, or try to explain ourselves. It sucks that we're meeting on these terms, but someone else really "gets it" and that's amazing. One day we'll round up everyone in the bendy world and start a revolution!!!

Tips on LIVING with EDS

Don't settle for something you don't want, be pro-active and keep on it!

Did you know a lot of Thai food is soft, gluten-free and nutritious? Perfect for EDS!

Try to find the positives in all of this. It can be really hard, but it makes life a lot easier when everything seems to be going wrong. What's worked for me, is finding three good things about my day before I let myself fall asleep at night. It could be something simple like a delicious sandwich you had for lunch, but it was something and that counts for a lot. It also helps you fall asleep in a better mood, rather than crying yourself to sleep over stupid EDS.

" What you are is what you bring, you've gotta cry before you sing."
(Chances by Five for Fighting)

1 comment:

  1. I love that you've been able to meet some other people lately. I can't wait for the day that I'm well enough to make a trip up and have you introduce me to Toronto :) I've made it one of my serious goals, so be ready! haha