Monday, March 28, 2011

There ain't no party like a tattoo tea-party!!!

Once upon a time, there was a group of bendable princesses. They had met in a far away land called Baltimore,where they promised to always remain friends. Finally one day,they reunited and got dressed up for a tea-party. Now,this wasn't any tea-party... It was a tattoo tea-party!!!!

That's right, not only were there scones, cucumber sandwiches and clotted creme...There was ink!

After they had enough of being all dainty and lady-like, they busted out the bendy tricks.

Who wouldn't want to ride off into the sunset with these princesses?

Some opted for the temporary option, as those princesses could slay any dragon with their eyes closed.

Then it was time to get down to important royal matters. The needles came out, and three princesses were ready to commit themselves to a lifetime of wonderful self-expressive art.

Princess Giggles wanted to go first. She may look innocent, but don't let that pretty face fool you.

She took those needles like a champ! Especially on the underside of her arm.

Ta Da!! Princess Giggles had the brilliant idea to combine sign language and text to say:"Zebras exist", with a lovely border from her favourite CD. This is based on the adage a lot of doctors are told "When you hear hoof beats, think of horses." Meaning, look for the most obvious symptoms and signs first. EDSer's say that "When you hear hoof beats, think zebras" or "Zebras exist." Meaning, don't just go after the obvious.

Next it was Princess Chuckles' turn. She wanted to try some Emla creme from the apothecary, complete with a frilly white glove.

Yes, a princess can have her tea and a tattoo. She can have it all!

We weren't sure if Princess Chuckles super-powers were at work or it was the creme, but it was a nice time to talk about the happenings around the kingdom.

With some new ink, Princess Chuckles can take down any knight in a jousting match.

Especially with her Endless Determination & Strength. Princess Chuckles wanted to bring new meaning to EDS, and do it her way!!

Next Princess Nakki's turn came. She was ready, especially since getting her shoulder put back together was no longer part of her royal duties. Ink was far better than any battle scars.

She also had a lovely time talking about those crazy unicorns running amok throughout the kingdom.

Oh my word! Princess Nakki isn't all sugar,spice and everything nice... Just kidding.

Princess Nakki was very happy with the final product. Especially since the blue ink glows in the dark! Also, that she can always carry a reminder about how far she has come on her journey,and to never lose sight of what's important.

Then it was time to have some more happy juice. All the princesses found their lack of proprioceptive awareness rather entertaining, since it was no different after some of that juice.

Court-jester Jerome provided some entertainment. Princess Nakki learned that she would rather stick to letting Jerome have vodka or rum instead. Red wine stained Jerome and his props.

The princesses laughed and laughed about breaking things, because they felt like they were the only ones in their kingdom who had such talent.

Princess must always be dainty, and dressed their best.

Until they get tired of it, throw on some pj's and apply more ink.

Since bendy princesses spend lots of time on the floor, they decided to compare toes to see who would fit in a glass slipper. Would it be a hyper-mobile, classical or vascular princess?

The stroke of midnight had passed, and the prince rode off in his carriage without a princess. Too bad for him. These princesses had the time of their lives and rocked that tea-party!

"And they all lived happily ever after....."

Monday, March 21, 2011

It's all good. New J-tube, adaptive goodness and testing theories.

* This post contains some potentially gross looking pictures of feeding tube stuff, don't tell me I never warned you*

It's not any news that life has been on the verge of insanity. Wait, that's pretty normal around here.

I guess I'll start with the introduction of Jerome 2.0

Yup, it's a Mic-Key button and I love it.
Getting it put in was a bit of an ordeal and expensive, but totally worth it. I got it done under sedation and a ton of locals. The tube didn't go in easy, it involved a lot of poking, digging and expanding. It also hurt. A lot.

For the most part, the swelling has gone down, it's stopped bleeding and far less sore. Balloon stomach wasn't so much fun.

I can sit up and stand straight now, but can't bend enough to put my back and SI joint where it belongs. Laughing, coughing, didgeridooing all still hurt and laying on my stomach is dodgy. Soon this will all be a thing of the past and Jerome 2.0 will be fantastic. I've been rocking the natural and Chinese medicine for this, and it all seems to be going well. My most current issue, is that my skin doesn't seem to like having the button too much.
I think it's a matter of compression from the swelling, irritation because the button is right on my skin and we can't forget about tape-rash. For now, I cover Jerome with Tegaderm while I'm in the shower to keep it dry. The button is bigger in diameter than the tube so the stoma had to be expanded. That was a blast! Wow, it looks like I've got a baby in there too. Yeah, no chance of that happening with this girl.

I love home-care. When I got out of the hospital, I was officially declared permanently disabled needing on-going care. There's a nurse that comes, asks me what I need and then a couple days later I get a box of supplies. It's a pretty sweet deal. Today's box included the Tegaderm patches I asked for, so I could cover up Jerome. I got them alright, they're the size of my head! My independence sometimes baffles a lot of people in the medical profession. I think having patients who take initiative and use other methods of healing freak them out a bit.

While we're on the subject of the tube, I had other interesting happenings going on just before I got Jerome 2.0 put in. Whatever was draining out of the stoma was irritating my skin. It was making it itch, crack and blister. Otherwise, everything else felt fine. I chalked up this theory that it was a PH issue in my stomach. Normally, or rather I used to be on an high-alkaline diet to control the reflux. When I had the pneumonia thing going on, I was hooked up to my pump pretty much all the time, with the exception of a few hours during the night. That meant, I wasn't getting anything alkaline in to help neutralize all the acid that likes to live in my stomach. My tube goes through my stomach to my jejunum, so whatever is brewing in there was I guess burning my skin. I decided to cut out anything acid forming and push the alkalines to see what would happen.

My theory was right!! Lemon water is my best friend. I can't taste the electrolytes I mix in, and the lemons which are an acid, turn to an alkaline when they get digested in your stomach. They help to break down food and absorb nutrients. It also tastes delicious, what more could anyone want?

Part of my package that involves home-care includes giving me access to other services I need. So now I've got some fantastic Occupational Therapists. I'm their first patient with EDS, like everyone else and they've been nothing but awesome about the whole thing. Every time I come out of an appointment with them I'm still baffled. It's the good kind though. In my last post, I wrote about the CMC/wrist splint we made. I love that thing, I can use my hands again without hurting myself.
I took a Sharpie marker to it because braces shouldn't be plain....ever. The writing is derived from a Japanese proverb that says "Fall seven times, stand up eight." Yesterday I checked to make sure I had written it correctly. Boy, was I glad to know that I didn't insult an entire culture or make an ass of myself.

I also got a few ring splints. At the conference this summer, I got to try on different kinds and was amazed that such things existed. I could use my fingers, and they wouldn't bend backwards... I'm still not sure exactly what I want yet and don't want to make any hasty decisions about them before I apply for the funding, the silver ones are insanely expensive.

This is what happens when I push on anything with my fingers. I think it grosses people out on the elevators when I'm pushing the buttons, hahaha.

Check that out!! Look how straight they are! It took a few days to get used to having fingers that didn't bend so much, but having more use of them is priceless.

Last week we made some adaptive awesomeness for my syringes. The surface area is small, and requires a lot of fine-motor skills. I don't have that anymore, and with bendable fingers it's a recipe for disaster sometimes. When you've got a syringe full or greens mix waiting to go in a tube and you're fingers slip, greens mix ends up every else but in the tube...When you sublux your fingers at the same time, it's a party!!

The pieces are easy to take on and off the syringes and make it so much easier to use.

Ta Da!!

Cool eh?! I'll have to get pictures of it in action, so you can get the whole idea.

When everything seems impossible and I want to surrender myself to EDS, I realize that I'm surrounded by truly incredible people who give me that extra push when I need it, in their own little way. They put wind back in my sails, so I can continue on with my own adventure and live my best possible life. I am continually blown away and so thankful for it all.

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."
(Harriet Tubman)

Thursday, March 10, 2011

Doule-Sick burger with a side of fries

This post doesn't have any specific direction, so I hope you can tolerate my nonsense. Here we go...

Since my last post I have been awesome enough to choke and aspirate on something. I don't know exactly what it was (other than food) because I choke on everything. Anyway, I'm pretty sure I had some kind of pneumonia starting up. I got the usual symptoms and as an added bonus: dysautonomia wanted in on the fun too. That meant, I spent 1.5 weeks walking the line between being able to kick it myself, and ending up in the hospital. I had been hooked up to my Joey-pump for the usual amount of time, but my body was in major over-response mode, and the usual 9hrs wasn't enough. I ended up needing to be hooked up for about 21 hours at a time. I hate the sound of anything mechanical,electronic or white noise when I'm sleeping. I can deal with anything else though. The Joey-pump was annoying to say the least. Never mind needing to get up and use the washroom, re-fill the fluids concoction every couple of hours and wake up to the occasional alarm. It was everything I wanted to avoid when I originally got the pump. yay. I tried to avoid it, but there was no way that was happening, because I'd wake up feeling like a complete zombie. Then, it would take me forever to get the energy to actually get myself hooked up and sorted out.

This was my first time being sick (with something that wasn't dysautonomia) since getting sick, so I had no idea what I was in for. I got pretty nervous in the beginning because I had been feeling good before and was getting what I though was enough fluids. After checking it out with my bendy friends on Facebook, I realized that this over-response stuff was normal. Getting even more sick will make dysautonomia go crazy...Strangely enough, a lot of us have been slammed lately. It all seems to happen at the same time, it's got be the moon but more likely the season change. I've been able to stay away from the ER and have avoided antibiotics. I had resisted it because just before that, I was on them for infected Jerome. I also kicked this aspiration/pneumonia thing last time without anything so I wanted to try it again. So far, so good...As much as this has sucked, I know that I can feel good again. I just have to listen to my body and ride this thing out. It's happening, just slowly...

Thankfully I've had this stuff, and some treatments to help me along (or do most of the work).
Dear: ER, I've avoided you again...buhahahaha!

I sometimes do stupid things when I'm brain-foggy... Things like this:

Can't a girl just have some tomato soup?! Epic Fail!!!

This week I also got some splints for my hands and wrists :)

I'm so excited at the thought of being able to put my hands in my pockets without subluxing them, or using my fingers without them doing nothing but bend.
I had to take a Sharpie marker to them, there's no way I can wear plain splints and braces. I put on the words that keep me going. It's derived from a Japanese proverb that says " Fall seven times, stand up eight."

Being sick again has given me a lot of time to process. I've needed to do it, and have been avoiding it like the plague. I haven't really thought a lot about my last year, maybe it's because everything has happened so fast, there hasn't been time to think. Now it's all hitting me like a ton of bricks and I'm trying to face it, but it's not fun. In the last year, I've lost my jobs from being sick and too bendable. I've ended up with AFO's, a wheel-chair, a feeding-tube, a pump and splints. I've spent the last 10 months mostly in bed and have had to face a lot of really scary things. Most of which, I don't ever talk about. I've lost friends who don't understand how bad EDS and dysautonomia can be, or who can't deal with me being this way. I get looks of pity or sadness, which drives me crazy. I don't think when I get looked at that way, the person doing it realizes how much that shit hurts, and it's the last thing someone in my shoes needs. None of that stuff does much good for building trust either.

I've pretty much lost everything that I loved and lived for. Nothing is simple anymore, I can't do anything without thinking about the consequences my body will dish out. I have to prepare for it all. My entire life has been consumed by this, and it's not a choice.

I do have the choice to make something of it though. That's where I'm trying to focus all of my energy. I've had to remove and protect myself from the things that bring me down, and really evaluate how I want to live. I have learned to accept that I will always have EDS and will always be sick. Nobody else is stuck in this body, or can fully understand the gravity of what it's like unless they're bendy, or I've trusted them enough to tell them. Even though I've lost pretty much everything, I'm happier now that I have ever been. I've learned what I need and don't need in life, and found my niche. I also found out for myself, where I fit within the grand scheme of things. This ride has been the furthest thing from easy, at times seemed impossible. The universe has always come through with truly incredible things. No matter how small or insignificant they may seem to everyone else, they are what keeps me going.

I am finally at peace, and I wouldn't trade it for the world.

"I like nonsense, it wakes up the brain-cells."