Sunday, June 26, 2011

no longer easy

my disease by ceck0face
my disease, a photo by Digital Heather on Flickr.

It's a picture of a picture, but you get it. My endometriosis was growing on the outside of my intestines and caused them to adhere to my abdomen wall and uterus. This pic is pre-cauterization.

When I last updated, I could barely type. My surgery IV line hit a nerve making my right hand and fingers just about useless. I was devastated to have endometriosis but lucky the "cure" was as easy as taking birth control everyday. The day after my previous post I woke up trapped inside my body.

I couldn't move. I could barely breathe small short breaths. I could barely whisper. I laid flat on my back, not moving, for an entire day, waiting for it to go away. I was convinced I had pulled a muscle in my chest because with my tummy incisions getting out of bed was a task and I needed help. I finally agreed to let Jason take me to the ER that night for fear I was going to stop breathing.

It turned out my lungs were full of blood clots (pictured here). I was hospitalized for a week first in ICU then telemetry. It was terrible and I don't remember a lot of it. I'll have the clots for about three months. I have to take blood thinners everyday for the rest of my life. Birth control causes blood clots and may have contributed to mine, so I can never take it again. This means my endometriosis is no longer easy to live with or treatable.

I need to have a hysterectomy. They gauge endometriosis on a scale from 1-4, 4 being the worst. I am a 3. I'll be 28 in a few weeks and everything is about to change. My gynecological surgeon told us we don't have time and need to get pregnant as soon as my hematologist gives the green light. It's now or never. We've wanted children for years-- all the names are picked out-- just thought we had more time.

We were still saving up money for our big wedding. Our wedding will now be smaller and faster. In my last entry I was feeling so cheated by life or cheated out of a life, but I didn't know how good I had it.

My nightstand is an ocean of pill bottles. I'm a journalist who writes about how her body turned against her.
I'd complain now, and I guess I've earned it, but I don't have the time.

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