So I've just spent the last few days just digesting the info that I do have H-EDS. It kind of funny to me that I need to digest it. I was pretty sure before the appt & was fine thru the appt, but I guess it took a few days to really sink in. I know it doesn't mean I'm any more messed up than I already was, but it does mean I'm not going to be getting better. I spent a bit of yesterday crying, not a sobbing mess, but just letting out a few tears.
I think one of the hardest parts of all this is my sister. She died about 2 years ago. Right now I could really use her & this is the first time since she died that I need my sister. There were plenty of times I wanted her & missed her, but this is the first time I've really needed her. We could be going thru this together, but instead I'm alone. She had EDS, but of course we didn't know. She was in horrible pain for so very many years. No one took her seriously. My mother thought it was depression (which my sister had as well). My father thought she might be a drug addict, why else would she be so desperate for pain meds. I though she had pain, but I also thought she had stress & depression which made the pain worse & I thought she liked the attention of being sick. I guess in retrospect we were all a bit off the mark. Her docs thought she had pain, but really it couldn't be that bad. They gave her Percocets & she took Tylenol on top of that. She was very under medicated & due to the acetaminophen she was piling in she killed her liver, then aspirated her own vomit & died. In my opinion EDS killed her. If anyone had noticed, or realized this sooner maybe she'd be here, but she's not & I can't put words on how much I miss her right now.
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4 comments:
I'm so sorry! Chronic pain totally sucks. I had the opportunity to go to a chronic pain seminar a few weeks ago, and was amazed to learn how undermedicated we tend to be, because doctors are afraid of losing their licenses because of drug abusers. The thing is, the percentage of chronic pain patients who become abusers is TINY, but it's what keeps us miserable, in pain, and suffering.
And yes, chronic pain and depression feed on each other, and anybody who hasn't experienced it just has no idea. I'm so sorry, Queen.
Hugs and prayers,
hedwyg
Hi, I found your blog through screwbronze and then had to scurry of to Wikipedia to find out what EDS is. I imagine a diagnosis, while it sounds like it wasn't a complete surprise, was a shaker for you. I agree with you about your sister - depression would seem like a pretty appropriate response to chronic pain and lack of understanding/diagnosis. At least you are armed with knowledge now, even if that is small consolation. I hope things don't seem too grim, I'm thinking of you..
Caroline
hedwyg -
The geneticist said that us EDSers tend to spend a long time very, very under medicated. When I told him I was on no pain meds & pulled up a referral for the pain clinic right away. Their clinic is really to far away for me to go to, but at least I know I have the referral if I need it.
caroline -
I originally had to scurry to Wikipedia to find out what this was when I was still trying to figure out what was wrong since I had realized no one was going to figure it out for me.
I don't think things are grim, but rather they have gone from something which might just go away someday to something I will have to deal with everyday for the rest of my life. It's a bit shell shocking I guess.
i understand what you mean by needing to digest the fact that you "officially" are diagnosed with HEDS. I had to do the same, even though I was pretty sure of it. I'm only 26 and almost wheelchair bound. I may never be able to have children because my pelvis is so messed up. What really got to me is that I will continue to get worse... it's been very difficult. I'm so sorry to hear about your sister. It's so hard to be dealing with this alone. Even though some family members show signs of HEDS, they fortunately, aren't as affected by it as I am. My mom has developped Complex Regional Pain Syndrome and we share our concerns and stuff. I hope you are able to find some sort of pain management. Hugs.
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