Friday, May 20, 2011

Getting closer to a diagnose?

It's been a long time since I last wrote anything here. I've been pretty busy lately with working, studying, moving and not feeling great in general. My semester is about to finish now, have finished the written exam and only have the spoken exam left. I moved to my own apartment little more than 3 weeks ago now and no longer commute as far to work! I have a great 72m2 apartment with a stunning view from the 13th (actually 14th from ground level) floor.
With the move I also got a new doctor who I had an appointment with yesterday morning. And what a doctor! She is just outright amazing! She didn't just listen, she also had an idea! And when I told her I suspect I may have Ehlers Danlos Syndrome she even said it is possible going by how many of my joints are constantly achy and how flexible I am, plus that I showed her some odd stretch marks and scars. A regular doctor who actually knows what Ehlers Danlos Syndrome is! She could even spell it without asking! I didn't even need to use my long list of symptoms I had written down. Now I have a team of two professionals determined to help me. My doctor and my physiotherapist! The next step now is to see a rheumatologist (who can send me on to the hospital if needed) and my doctor said she may be able to cut the waiting time for seeing the rheumatologist as my problems are pretty bad and getting worse. Normally the waiting time to see a rheumatologist here can be months, she's hoping I can get to see one in just weeks!

I know it can be other things making my body give up on me like this, but no matter if I have Ehlers Danlos or not, my body is misbehaving and I want to know why! EDS is a heavy diagnose to get, but I'd rather know than not know. Whatever it is, I can deal with what my body is doing, I just want answers! I am at peace with the changes in a way. The pain is getting to me at times, but most of the time I can handle it and keep going like normal, whatever normal is ;)

To me "normal" is to be able to scratch all over my back without problem, or put foot up on something at chest height and tie my shoes with straight legs. Both those things make my workmates go all "OMG!" because they can't do it. It has also become normal for me to rest more and more when off work. It also happens I use crutches for walking outside on days my hands and wrists are not hurting too much. Other days I just walk unaided and hope my knees and ankles won't act up too much. My knees can be a bit wobbly and my ankles likes to lock. It's not a nice feeling when an ankle locks, it hurts!

I'll try to get better at updating here.
Laters

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