Digesting Ehlers-Danlos

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.