Hey Everyone!
It's been awhile since I have updated, and I'm sorry. Life is just what it is... frustrating, confusing, annoying... and sometimes joyful. Winter is starting and for me, that means life becomes a little more like hell. During the cold months and snow, nothing good seems to happen. My dislocations and subluxations increase greatly and so does pain. It's also scary because if I slip or fall on ice or snow, I get a little more than a bruise. After saying all that, I want to say that I'm so grateful for this mild winter.
I am looking for/trying to figure out how to get a service dog. I have had a decent amount of people say that I don't need one yet. Honestly, maybe I don't need one yet, but I will soon. My dislocations and subluxations are getting more frequent and harder to get back into the proper placement. A service dog could really help me with things like bracing me if I feel weird, getting medications for me if I can't get it, opening doors, carrying bags for me, and laying on a part of my body to help with muscle spasms/pain. It usually takes a really long time to get a service dog and have them trained anyway.
Also, today I sent an email to 3 clinical trials for EDS. None of them are near my house but they are in this country lol. So many of them were from France. Not sure why it is France, but it is. I am so tired of all this. I would really love to be part of a clinical trial that could help me. It just would probably cost alot.
The best treatment I have found so far is is Butrans Transdermal patch. It gives me a certain amount of medication every hour. It has help alot with pain but isn't a cure.
Once of the worse things you can say to someone with a chronic condition, especially a rare one with no cure or treatment, is "You will get better. There's no way you will get worse." I've already accepted the fact that I will probably get worse... It's not easy, but it is necessary.
Well, I'm going to get off here and try to get some sleep. (It's 4:30am!! o.O )
Carley
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