Monday, November 29, 2010

Three Good Things 2nd edition

So, there are a lot of people who check this blog out...I know this because I have super-powers. Or, it could be the stats button I just found. I need reader participation for this post.

In the past week, I've listened to a lot of stupid things people say when they see this "disabled girl". The "I don't do pity" and "Thank you for your ignorance" lines were used quite a bit. Heaven forbid I get treated normally...

I have decided that, this is going to be another edition of Three Good Things...

1) I can finally play my didgeridoo again. It doesn't hurt J anymore, I can get some really good breathing exercise in, and completely chill out.

2) Laying on my stomach is once again possible (for about 30 min). It makes my hips, back and SI joint very happy.

3) Jerome can do vodka shots. You read it right.... It burns for a minute, but then it hits and you get drunk straight away. Don't tell me that if you had a tube, you wouldn't want to try it....

P.S. I have managed to stay out of the ER (dysautonomia) for over a month!! Greens mix, salt water and acupressure seem to be key.

Now it's your turn to add your Three Good Things (in the comments section).It doesn't matter what they are, because positive anything is better than negative nothing. I know you're pressure.

Tuesday, November 23, 2010

Because it's important....

Since this is my blog, I can do what I want with it :)
This isn't exactly EDS related, but I think even more important.
Please take two minutes to check it out, and pass it on.

Saturday, November 20, 2010

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!!!"


Saturday, November 13, 2010

Photos of some things EDS

I am well aware that this blog is lacking in the photo department, at least I think so. So here's EDS in some of it's glory. Enjoy!

Jerome and the Holter are ready to party! Having the gj-tube and all the wires were a huge pain in the ass. Glad it was only for 24hrs. 4 days later, and my skin still isn't happy from all the tape.

Jerome and Holter...Trying to conceal a tube and all the wires was interesting. Eventually I stopped caring, and if people stared, then I hope they got freaked out, haha
A combination of a Al-Greens mix, Iron, Zen Theanine, Fish-oil and salt water. Thank you Jerome, I don't need ingest any of this nasty stuff anymore.
The one good day without any tape rashes in the last two weeks.
This was the piece of paper that has saved me from a TON of fighting with health care providers. I made EVERYONE read it, before they did anything to me or asked questions. It was a life saver.
My new best friends. I was originally going to get the Koi fish tattooed on my leg but then AFO's came along, so this is my plan "B". The Celtic tree of life didn't turn out as originally planned but I think I like it better this way. The Koi is symbolic of perseverance in adversity, and strength of purpose. Also courage and ability to attain high goals. The Celtic tree holds the meaning in balance, strength, longevity,rebirth, life force and interconnectedness with the universe.

The shoulder that dislocates a million times each day. Multi-directional instability, dislocations happening with a 20 degree flexion woot!

Apparently I angered the gods...Dislocated it typing, while yelling at my computer.

I do not enjoy having bendy fingers, it makes everything difficult and I haven't found any advantages of it yet.

I had no idea feet weren't suppose to bend that much...

The classic bending over with straight legs and palms flat on the floor
Didn't know that was abnormal either...I thought everyone could do that. Before the AFO's I walked around with my legs pretty close to looking like that, turned in a little less. Yes, my hips are a mess.
One of my favourite tricks, because the look on people's faces is priceless.
That's how I find myself standing with out supported ankles. Yes, I will forever have horrible tan-lines.

There are more pictures floating around somewhere...I'll get to it another time when I'm stuck in bed.

Thursday, November 4, 2010

It's okay to be okay

This post has come from having old wounds opened, and new ones added to the collection. My stay at the hospital was a nightmare, and yes I will eventually be opening up a can of proverbial whoop-ass. For now, in hopes of being able to get this off my chest and maybe some sleep, I will present you with this.

It seems as though Western medicine has started to catch on to the idea of treating the whole person, and trying to include mental and emotional health into their scope of practice. I think it's a huge step in the right direction, and hopefully it will help change the way patients are treated.

While it is no secret that I have gone the route of natural medicine, and think it's the greatest thing I have done for myself, it may not be so known as to why I made the choice. 13 years ago when I started on the long road of EDS, it began with a dislocating shoulder and all over joint pain. I was referred to two surgeons, put on pain medications and told that it was no big deal. Over the years as more joints started to dislocate, pain become less manageable I ended up seeing more and more doctors. I was told that there was nothing that could be done, that I was making it all up, looking for attention, doing it to myself, blowing it out of proportion, and that I just had to learn to live with it. Nobody could explain why all the treatments I tried were failing, other than that I was sabotaging them and wasting people's time. Awesome, just what I needed.

This lead to my eventual miss-trust in pretty much everyone who practiced Western medicine, and depression. I was thrown on a few different low-grade anti-depressants and I got some anxiety meds for emergencies. The girl who was once happy-go-lucky had turned into a ghost walking around in a shell. If I could use one word to describe that time in life, it would be: numb. As a defense mechanism, I learned to turn off every emotion and not attach myself to anything. Doing that would mean I wouldn't loose anything. If I didn't feel joy, then I wouldn't need to feel sorrow. If I didn't feel optimistic, then I wouldn't feel let down either. I thought for me, that it worked. I could walk through life in a fog, not feeling anything, and eventually things would get sorted. I just needed to wait it out. I was so wrong.

It took a while, and some very honest friends telling me that no, I wasn't okay and I to make some changes. The first thing I did was find a naturalpath. My consult was 1.5 hours, we covered EVERYTHING and the thought of that baffled me. Why hadn't this been done long ago, when the whole EDS mess started? And, why was she the first person who really listened to me? I left her office feeling optimistic, and far less numb. That day, I decided to scrap Western medicine and put a bit of faith into something else. Over the years, holistic medicine has also helped me learn to think differently, which lead me to living differently.

So we'll go back a little bit to where I started. The reason I'm bringing this up, is that all of the doctors and most of the nursing staff at the hospital asked me about how I manage to keep positive. How could I be excited to get a gj-tube put in? Surely, it's not possible for me to be okay with all that's happened. Haha, if they only knew some of it. I had a neurologist consult this week to get the suspected dysautonomia sorted. He kept asking about what life was like before EDS got bad, and how I've handled it over the years. This meant that wounds that just healed, got opened. My psychologist thinks that I have trauma issues, as a result of dealing with all the negativity thrown my way from doctors over the years, and needing to fight for everything.

I won't lie, loosing the ability to do everything you live for is hard. Going to sleep and waking up in pain everyday is hard. Giving up some amazing opportunities, and even girls nights is hard. Feeling like you've been left with nothing is hard. Gaining things that will make life "easier" is hard. I don't think anyone as a child envisioned braces, wheel-chairs, endless doctors appointments and extra tubes sticking out of their bodies when they grew up. Yet, here we are, with varying degrees of disability and regression; with lives that somehow need living. I will be the first to say that going through the grief process, with a condition like this never really ends. It comes in waves, depending on what life throws at us. In the last year I've managed to get over the anger part, and am pretty much through the sadness bit I think. I have my days when I'm so tired of fighting all the time, just to be able to live. I pay insane amounts of money for treatments (which I love and think are totally worth it) to be able to work, have less pain, and possibly slow things down. Those are the days where I stop caring about everything and completely shut down. I isolate myself and just process, it's what I need to do.

Being okay takes a lot of work in being really creative, resourceful, brave,stubborn,patient and having confidence that all will get figured it out. I find ways to make whatever has been thrown at me, work. I've learned not to have any expectations, but to go along for the ride and enjoy it as much as possible. It can mean jumping in with both feet, or taking a step back to think about if something feels right. That's the other thing that has really helped. If it doesn't feel right, then I won't do it but, I will fight for what feels right for me and so should everyone else. It means slowing down, and not taking anything for granted. As a rule for myself, I have to find at least three good things about my day before I go to sleep. There are always good things in each day, no matter how bad the day was. For me, it also means having faith that the universe has my back and that I'll always somehow make it through to the other side even if I have no clue what's in store. Who does anyway?

I have lost pretty much everything, but have gained in so many other ways, that I wouldn't trade my experiences for the world. Those are the things that help shape and push us to go further than we ever could imagine. Sure, the journey is hard and at times just plain horrible, but we can always look back with pride at what we overcame and accomplished. For those of us who are young and were once ready to take on the world, being thrown into the land of EDS has probably knocked our entire lives off kilter. We were forced to grow up and mature quickly. A lot of us facing, or coming to terms with our own mortality. When that happens, everything seems to take on a new definition, with a deeper meaning. We measure life in the little things that make life wonderful, rather than what is quantifiable.

I came to realize, that these are the same lessons that takes almost everyone a lifetime to learn. In a way, I'm glad to have learned these things now, so I can live life to the fullest and not sweat the small stuff. It has essentially saved me a lot of unnecessary pain, wasted time and sweating the over petty things.

Living with something like we do, is far from the norm of most people. When they learn about how we live, with the insane amount of complexities; it's not how they picture living life. It's not what they want for life, and it may just be a bit scary. Think of how it was for us being freshly diagnosed or just starting on this road. I'm sure I wasn't the only one scared shit-less. If someone hasn't even been able to experience the symptoms (although I'm jealous), having to see what EDS can do isn't pretty. Knowing there's nothing that can be done to make this beast of a condition go away, and not having a clue how to help is probably intimidating, even if you're not living it. Maybe the best thing they can think of to help us is to see if we're okay, because it is something, and it's something they can do for us, when everything else is beyond anyone's control. Sometimes, that is the best gift we can get. It doesn't happen often that someone is willing to check in with us mentally and emotionally. Because so much of it is physical, it takes a lot of work to be able to move past that, and get into the the one of the most important aspects in living with the monster we call EDS. (Please correct me if I'm wrong)

This is the little revelation I had over the weekend. I started this post earlier in the week, rather annoyed that I felt it wasn't okay to be okay. Now, I may see why someone may wonder if we're okay and if we are, how the hell we managed.

Some of us are further along this road than others. Some of us are in the thick of it and can't quite see the little spec of light at the end of the tunnel. Some of us have just come out on the other side and are ready to live, laugh, love and fight for what is right for us. Regardless, if we face the things that are haunting us, and don't back down, in time we'll be okay.

I guess all we can say is that, it's okay to be okay and it's awesome. It just takes a lot of work.

"I've got a lot of lemons and am trying to make lemonade. Now, if I could only find the vodka!"
(Tiffany, a fellow bendy friend)