I'll start with the junk, because ending on a positive is always better.
I have a consult with an ENT just after I get back from Baltimore (more on that later) .
When reading this, keep in mind I have a twin sister. When I write "we", it's not because I've gone crazy...The combination of being born early and having ESD is one of the reasons my ears have been messed up my entire life. I had a tubes, tonsils and adnoids surgery very early on. Like before 1.5 yrs old, and have had 3 more tubes surgeries with constant ear infections and hearing issues. Pair that with GI issues and ADHD/learning issues I saw a lot of dr's growing up. Not nearly many as now, but a lot for a child. My ENT as a child was a HORRIBLE DR. He would poke things in our hurting ears, and yell at us for being jumpy or getting upset. We got a poked with a lot of needles, had x-rays done ect...the whole bit. By the time we were 5 anything, or anyone who resembled a doctor would send us into a panic. Part of that is also that they didn't know how intense the twin bond was. We both generally had issues at the same time and that meant watching your other half go through it too. I once remember waking up in the recovery room with my sister on the other side of the room (yeah we did the 2 for 1 surgery...) and the nurses and doctors not letting us be together. That was before we screamed until we were beside each-other :) By the way, you don't want to mess with a set of twins...you're asking for trouble.
I think that was what initially started my mistrust for doctors. As I grew up, I slowly learned to trust again. When the EDS started up, and I saw more and more doctors; I started trusting less. I've had to be so proactive, and really fight hard to get to where I am now. I've learned to take nothing less than what I want and if they want to fight with me after the initial consult, I won't have any of it. There have been doctors and specialists who have said some pretty mean things, enough to get through this thick skinned girl.As a result I have become hyper-vigilant of new doctors and want them to know what they're working with (EDS) before we start anything. I've had over-confident, ignorant doctors who have messed up my body even more. Most of them have dismissed almost everything I've said, with reading in hand. I'm going to try something called Muscle Activation Techniques, and am not sure how to approach the whole thing. They say that it has huge potential to help joint instability, pain and arthritis. I know I have nothing to loose, and won't know until I try it, but that also means trusting which I don't do very well. The one thing that has helped, is the switch to natural medicine. It is the complete opposite, and it's wonderful.
Speaking of opposites, in the last week my EDS itself hasn't gotten any better. But.....living with it has become easier. To keep it short and sweet this was my facebook status today: extremely humbled and greatful that in the midst of EDS hell, the universe still has my back. My entire trip to Baltimore and a set of wheels have not cost me $ 1.00 Sending out the positive ju-ju to everyone else. Take that negativity !!!
I'm so excited for the EDNF conference in Baltimore. Getting info. for my doctors will be good but I'm most looking forward to meeting the people I've been talking with for the last year. Just imagine, a ton of us bendy people all in one place, where everyone "gets it". As for my wheels, it's a collapsible and second hand. It needs some work but will pretty much end up being a custom job by the time it's ready to roll. I've become a pro. at adapting braces and other things to make them EDS friendly. I'll be getting a lot of good use of it, and am looking forward to reducing injuries and being able to participate in life more.
I still can't say that I'm excited at the actual prospect of needing wheels, but I can't change it. I can only find a way to make it work for me. The same goes for the AFO's that I needed like last month. I'm still waiting on funding. Ugh. The weekly fight with doctors and people who say I can't get funding still continues. I'm hoping this will all change soon. It's exhausting and is the biggest thing that sucks the life out of me.
The key to getting through all the hard things in life is doing things that you love. This weekend will include: paddling and going to the Pride Parade with my two bendy friends :) Now that the stupid G20 is gone I can start enjoying the city again. (Don't get me started on what I think about how it all went down, I could write a novel. Let's just say I am one of the people pushing for an independent review of the security )
p.s. I have no idea why I'm getting these underlines going on with some of the text above. We're going to call it interpretive art....
"Happiness is not about what happens to you, but how you choose to respond to what happens. That's why it's called happiness, not happeness. Though it could always be called hope-ness. You must always leave room for hope that all happens for a good cause."
(From the book: How to be Happy Dammit!)