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.

"Do you know the muffin man?"
"The muffin man?"
"The muffin man!!!"

(Shrek)

On loosing a lot...

My new heading picture kind of makes me laugh.

It could be just me but I see EDS written all over it. Some things are more obvious than others, and I wasn't doing anything particularly bendy in it.

Ironically, my bendy friend took it. We were at the Pride parade, this was before the EDS hangover.

To start, I'm pretty much the only one sitting on the ground. Yes, I'll just plunk myself down in the middle of a side walk, or anywhere for that matter. When my legs have had enough, I need to sit or lay down. No shame. The wheels are on their way, soon I won't be needing the ground or a floor so much. Those lovely tan lines on my shoulders are from Leuko-tape two.summers.ago. I can't get rid of them, even with the gross fake'n bake creme. It was the only way I could be out on the water without major consequences. Yes, I know it was a crappy tape-job but I got to the point where I just didn't care anymore. It did the job, and I was more concerned about getting on the water ASAP. I would have had my toe nails painted in a fun colour, but bending over causes my neck to start subluxing; the rubbery fingers don't do well with colouring in the lines either. The ankle braces are just a little bit visible and I kind of like it.

It wasn't too long ago that I had completely lost all hope of anything good in this mess. To be completely honest, I didn't care if I woke up the following morning. I didn't care about anything, and walked around like a zombie for a couple months. There is a lot that's been taken from me in such a short time. These days seem to be a litter easier in dealing with it all, but last night I realized how much I really lost in such a short time. The whole not being able to paddle anymore and needing a wheelchair hit me like a Mac truck. I will say that I've very saddened by it and wish it never had to be like this. I don't know if it's just me, or how people generally look at things we have lost, but it seems like the things that are gone, are the things I treasured most. I loved the jobs I had, there was nothing better than being on the water or just taking my dog for a nice long walk. Being able to walk for myself is currently a big one. I could do simple things like cook and bake from scratch, I could paint my toe nails, and use chopsticks. Bigger things like having to turn down scholarships at a school overseas, and loosing friends has been nothing but horrible. I'm not a material person, but I need to experience my world physically. I look back and as much as I hate EDS and what it's done to me with a passion ,I've come to realize that I have also gained.

I've learned to slow down. Funny enough, it's never worked for me. Slowing down meant stress. I still hate things like yoga, deep breathing, and generally moving slowly. Especially walking...All of those things make me want to jump out of my skin and scream. Hence the Taiko lessons, and bike-riding in traffic that I love so much. I have come to love the following things more than before: chilling in a park with friends on a sunny day, reading, blogging, taking naps in a canoe, didgeridooing,laying in a hammock in the shade, just listening to music or the water in my rock garden.

I've also gained a plan "C" that is looking very possible right now :)
Can't wait to just go back to school and do what I want to do.

The most important thing I've learned on this insane ride is to just chill. We can't make most things happen any faster, or change it. So, we can either get ourselves all worked up over things we can't control or, we can choose to control ourselves and how we respond, save some sanity, and just chill. The latter is starting to work well, funny how it took so long for me to figure it out.
When we chill out, it seems as though everything else does as well. Maybe not, but it makes it easier to handle. Especially the negative junk that comes so easily with EDS. I'm not trying to tell anyone how to live with this, we need to do it our own ways, but this is what's worked for me. Maybe if you're still looking for ideas, this may be one worthy of considering. Cause' you won't know unless you try.

I'm really hoping to not loose anymore than what's been lost already. It would essentially mean loosing my independence and that isn't an option for this girl as I don't plan on being locked in a padded room.

"You can't stop the waves, but you can learn to surf."