EDS Hang-overs

We'll see how long I can write before this post stops making sense. I've been feeling gross, and the melatonin (my best friend) is kicking in.

This weekend I over-did it. Still learning to take it easy and not really liking it.
Saturday morning I got up to go for a paddle. This came with much excitement and anxiety. I wasn't sure if it was still on the "can do" list. Shortly after getting on the water (like five minutes) I realized that it was no longer on the list of things I can still do. I was hoping I'd get one more summer out of a canoe and go out with a bang like I did last year with kayaking. From the get-go, I could feel the tendons pulling in my arms and wrists. My hands weren't happy with the paddle, they got cramped and my fingers started subluxing. Shoulders started to dislocate and then my hip followed suit. It was really frustrating knowing that I used to easily be able to spend the entire day on the water, in different conditions and now I can't last 20 minutes on flat water. One more thing I have to let go..ugh! The one positive thing that came out of it, is that I can still have some of the most excellent naps in a canoe. There is nothing more relaxing.....nothing.

Sunday, I met with a bendy friend and 4 other friends for the Pride Parade. What could be better than celebrating peace, acceptance and love ? We started with chilling out in a park then migrated to a sushi restaurant. My bendy friend and I both have TMJ issues, and I've got the awesomeness that is dysphagia. I couldn't eat any of the seaweed, and a bunch of other things on the menu. There was also a lot of choking involved. yay. Eating took a lot of effort and energy from both of us, we were tired just from eating. We then walked around for a while finding a good place to stand for the parade. With over 1 million people, sitting wasn't really an option unless you had some wheels. Not to mention, that it was HOT out. The parade was fabulous, in addition to my bendy friend and I being so excited that we lasted as long as we did. Sadly, it wasn't long enough and we had to go find somewhere to sit. After the parade we all went to another park to relax in the shade and cool down. By then, my body had enough. I had a massive headache, everything was dislocating and hurting. Walking was hard, I looked really drunk...Sadly there was no alcohol involved. After a while, we got up and walked around some more. By then my bendy friend hit her threshold and needed to go home. Ten minutes later I was in the same boat.
I stumbled home (literally) feeling like I had been hit by a truck. By then, my headache was killer, and everything hurt more. That's when the puking started. When I over-do it, I don't always realize it because of my insanely high pain tolerance. Instead of feeling pain, I puke... that lasted about 8hrs. 30 hours later, I'm still feeling gross. I've done everything possible to help but I think it's something that I need to just ride out.

I'm getting my wheels sometime this week. I'm not excited that I need it and can't even walk around for the afternoon anymore. I will say looking forward to surviving a night out with the girls, and just participating in life without the EDS hangover.

My bendy friend is also going to the EDNF conference, we're really looking forward to it. Just imagine, a whole bunch of people just like you where you're "normal"...Can't wait, T-8 days!!

" I bet if we drink enough we would start walking like we're sober"
(From a conversation I had with a fellow bendy)

Mixed Nuts

This post doesn't really have any one theme I'm just rambling, or reflecting I should say.
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!)

When reality smacks you in the face...

I seem to have gone post-crazy this week. Whatever, it helps me deal with everything that's been thrown at me. Blogging costs so much less than seeing a psychologist. It's also convenient, as most of my posts are written at stupid o'clock in the morning. Hopefully, you are getting something positive out of this too. Even if I'm writing about what some of you are going through, I know it's exhausting and the furthest thing from fun. But, the positive in all of this mess, is that someone truly "gets it". I get it, and so does every other bendy person who reads my crazy rants. For anyone else reading this, thank-you for trying to "get it", it is very much appreciated when you feel like the rest of the world doesn't want to even try.

On top of seeing awesome GP today, I had an appointment to be put back together (literally) with my chiropractor. There is nothing like the feeling of having everything back where it belongs. It's wonderful. We were talking about the insanity of my past couple weeks, and what my body has decided to put me through. Yes, I think my body and I are separate things...forget the whole mind and body connection, there is no connection when you feel like chewed gum only resentment.

To get back on topic... She asked me something that I have been thinking a lot about, but have never really talked about until now. Aren't you lucky?! She wanted to know where I see myself in five and ten years. *insert panic, fear, anger and sadness here* I guess that's what happens when you haven't yet fully accepted life with EDS. I've accepted that I have it, and it won't go away, but definitely have not accepted that it will most likely get worse. I'm not saying it will get worse because there needs to be some optimism and hope in all of this. I will say that I'm having a really hard time accepting the big physical changes that comes with EDS. I've been comparing myself last year to this year. There's a big difference and I don't like it. What I hate most, is that I have absolutely no control over it. That's the biggest thing I'm learning to deal with right now, my lack of control over my body which also means I can't control what will happen to me in life. I keep thinking that if I did this, or if I did that, my body would get better or would plateau and everything would fall into place. Stupid reality.

I was talking with my bendy friend Sama about all of this and she helped put me back in my place. She explained the why's and how's of life with EDS and it all made sense. There are some things only a bendy friend can explain. Some of what we talked about is here, I really suggest checking it out if you're having a hard time like I am. http://www.youtube.com/watch?v=OMl7rr1M3M0

Where do I see myself in five years...I have no idea. I know that I will most-likely be in a wheel chair because even now, there are days when I would love to have one. I know that I will not be working my jobs that I am now, and that probably any kind of physical activity will be a thing of the past. I see myself being an awesome child-life specialist because I "get it" and being a pro-star advocate for the kiddo's I'd be working with because I've been there. I don't know about relationships, new outlets or even where I'd be living. In ten years, I won't even go there it's too far beyond what I could even imagine. I know where I would love to be in five and ten years but I need to be realistic and find new goals that I can achieve. What I do know for sure, is that I'm going to try my damnedest to make it all work for me. It will require a ton of adaptation, learning how to swallow my pride and ask for help. It's a good thing I'll be able to put my super-power (being stubborn) to good use. The last thing that I know of, is that at the end of the day I will take away something that makes me grow as a person, and that tomorrow isn't far away.

" To fear is one thing. To let fear grab you by the tail and swing you around is another"

(Katherine Peterson)

Vicotry is mine!!!!

So I went back to the GP with the intention to fight it out again and get what I needed.
I printed off a bunch of dysautonomia info. and was more than willing pull out those fightin' words.

However, I was in for a nice surprise I didn't need to fight for anything. This is the GP who took me on last year, or was it the year before? Anyway, no one else would take me or would even really listen to me except him. I'm talking about Western medicine here... It's been a fight every step of the way.

After my failed attempt with the first GP last week, I called the cardiologist to see if I could get in. I'm suppose to be going back every year anyway to get tests and a follow-up. Since it had almost been a year and I'm having these awesome cardio symptoms I figured going back would be a good idea. Apparently, not. The cardiologist refused to see me because "Last year you were fine, and it doesn't matter if you have new symptoms because you're fine." I brought up the fact that I need to be going each year anyway to keep an eye on everything "No you don't need to come in for a follow up, because last year you were fine." No amount of persuasion worked, and we eventually ended up in a very heated discussion. If I wanted to see her again, I would have to get a new referral and would have to wait a while. I was not impressed at the cardiologist's neglect and today went back to the GP to get a referral to a new one. I refuse to see any doctors that I have to fight with after an initial consult, it doesn't do any good for my mental health and I'm just sick of fighting with doctors.

This time, I saw the awesome GP as last week he was on vacation. I explained everything and he was on board with what I wanted. He did a bunch of blood work to look at everything (CBC, kidneys, thyroid, iron etc.) and make sure we haven't left anything out. He also said that way it would get me into the cardiologists faster. He ordered an echo which I need to do this week, and....thought it was important for me to see a neurologist considering everything that's going on. He's also more than willing to fill out my paperwork to go on disability and back to school since I am now pretty much unemployed (as of Sunday). Thanks EDS.

I'm still not anywhere close to seeing that light at the end of the tunnel. In fact, it's getting darker but it was nice to not have to fight today because I'm just plain tired of it all.
I'll be headed to appointment #4 later this week, so it could end up being a blog-post on it's own. I'm hoping not.

"I'm a mog.Half man, half dog. I'm my own best friend!"

(John Candy is Space Balls)