Thursday, July 10, 2014

Cold summers

This morning I cannot help but think where I was last summer. While everyone else in New England was dying from the humidity, I was freezing my zebra tail off in the hospital and then the rehab hospital from June 28th to August 28th. Hospitals like to blast the AC and they never have enough blankets. People call them cold and sterile for a reason.

Last summer was when I first heard of Vascular Ehlers Danlos Syndrome. I had a killer stomach ache for days when I finally couldn't take it anymore. I went to the doctors and it turned out my aorta had dissected and was starting to rupture. During the surgery my iliac ruptured and I almost lost my leg. From there I kept having complications that required more and more surgeries, and I kept being told I couldn't come home. I had a muscle flap operation, and a wound vacuum. I couldn't walk and shower on my own and apparently while on so many drugs I said lots of sad things about wishing I was dead because the suffering was too much.

My family was so scared and now when they tell me about it, I don't even know what to say. 

What do you say? 

I just felt so guilty for putting them through so much hell. I know I had no say in the matter, but I can't let go of the guilt. Since then, others in my family have been diagnosed. The doctors even think that the VEDS is what caused my mom to die so young. 

Then, once I was home, my spleen ruptured, I got blood clots in my lungs, I had an encounter with a NG Tube which was horrific when my intestine became blocked from scar tissue.

I have had a year to let it all sink in, but there are times when I feel like I am back in that cold, miserable place. I don't know if I'll ever be completely home again..


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