Saturday, March 13, 2010

Let's try this again.

So, it's been about 8 months since I last posted.
Life happened and now, I try again.

In my last post I was suppose to see the geneticist, and that I did.
I've definitely got EDS type 3. woot! Now, I'm not saying I'm excited about having ineffective glue; but I'm relieved that there is a name that go with all the symptoms and that I'm not crazy. For years I was told that it was in my head, and that I was looking for attention. It's not like I don't have anything better to do with my time and money. Seriously!

I still have a really hard time going to any "normal, Western medicine" doctors and have major trust issues. It is very rare that I will be listened to, even if I provide concrete, sound literature on EDS. I still get the "What the hell is this, what the hell is wrong with you?" ,
"That's impossible, you're making it bigger than it really is". On and on it goes. Or my favourite one being that local anesthetics don't work on people who have EDS. Even with the reading in hand, and you telling them you can still feel everything...apparently you're lying. Sedation='s my best friend.

Interestingly enough, the geneticist was very impressed with my being pro-active and creative. They are using me as an occasional resource for other patients, because they don't have the info. on how to get by with the day to day stuff. It's all come from flying my the seat of my pants. If it helps someone else, then my job is done.

Since then, I've learned a lot about this crazy body of mine.
I've learned that you can sublux your neck sleeping, and that massive migraine isn't a hang-over.I've also come to accept that things won't get better (symptomatically) and you have to just keep going. Life won't stop because you're having a rough go at it, so it's best to continue being creative, and be ready for anything. You can laugh or cry about it, I choose to laugh because sometimes it's the only way.

My list of "Can Do's " has gotten significantly smaller. With each item that gets crossed off that list, it's like a kick in the teeth. The biggest loss has been, kayaking and canoeing. Being on the water, is where I feel whole. It's my happy place. That very same element has been something that provided me with both adrenaline rushes and complete relaxation. I could easily spend 7 hours on the water at one time. This isn't the case anymore and it's been rough. This past summer, kayaking started to become dangerous. My hips kept subluxing (you use your hips A LOT when kayaking), I kept popping ribs and my hands would loose all their strength. Not to mention shoulders dislocating hunderds of times. I knew it was something that I would have to eventually give up, but I wasn't ready yet. Canoeing is something that I can still kind-of do, maybe. There won't be anymore 7hr days on the water, and river-running might be a thing of the past. I'll have to be content with 2-3 hours playing in the swells or on flat-water. But, it's something, and I'll take something over nothing.

Going to the climbing gym, yeah that's not an option anymore either. I can say that I'm thankful for what I was able to do given the circumstances.

There are still some "Can Do's" that are keeping me sane, and I've recently found some new ones. Yes I can still bike-ride, skate, roller-blade, sing at the top of my lungs, play my dideridoo, and the newest additions: playing hand drums and making soap. This is where my energy is focused.

As for my current jobs, well there has been a lot of adaption to say the least. I want to my able to work as long as possible because I love them. There's no way around that. I've found something that I would like to pursue when my current jobs aren't on the "Can Do" list anymore. It's plan "C".Plan "B" is a very slow, top-secret work in progress.

I'm still learning to ask for help and accept it. I hate it. I'm the one that's suppose to be helping other people. I can dish out the advise, just can't take it yet. Through all of this, my friends and family have been the most vital support system in my quest to be as independent as possible. Without them, who knows what I would be doing. I don't really want to know. They know I don't want a pity-party and need to do things for myself. I sometimes need to vent, but never want pity. It doesn't get you anywhere.

Tips for LIVING with EDS

If you have dislocaty shoulders, carry a back pack.

In that backpack, always have the following items: tape, heat/ice patches, medication/supplements and a tensor bandage. This will allow you to be more spontaneous and deal with things as they happen instead of stopping the fun at that moment.

Be proactive. Get EDS literature and copies of all your files in an organized folder, keep them up to date along with that literature. Bring it to all of your consults and big appointments. It will save you and the specialist a lot of time from having to answer a million questions. They also tend to take you a little more seriously.

You know your body best, listen to your instincts. If you're stuck with a doctor you don't like, who won't listen to you, cross them off the list. Find another one who will listen, it's a HUGE pain, but vital to your well being.

Having EDS will probably mess you up in the head. Don't be afraid to get help.

Do what works for you.

"Blessed are we the flexible, for we shall not be bent out of shape."

Renee Locks

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