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Georgia Peach's blog: "scleroderma"

created on 05/12/2012  |  http://fubar.com/scleroderma/b348093  |  1 followers

UPDATE!

I just realized I needed to update this so here we go:I had emergency surgery this past winter where they removed a blockage the size of a golf ball. Apparently that is what was causing my pain and digestive issues. Why it took so long and so many tests to find I will never know! A golf ball seems pretty effin big to me!!!! Since then I have felt MUCH better. I can eat again and gained back a bunch of weight I had lost. I'm no longer "mostly ill" adn "mostly in bed". I'm actually looking for work and living my life again!!! I don't have health insurance so I haven't been to a doctor in quite a while so I don't know specifically whats going on as far as scleroderma goes- but I don't care cause for the most part I feel better than I have in ages!!!

Hi... I'm going to die

As most of you know I took a long fubreak. Real life has been kicking my ass and I'm finally ready to come back and talk about it.

It started over a year ago, I saw a doctor for a physical and to see if I could discover the reason for the symptoms I was having. I had been getting sick on and off for a while (I'll spare you the details). She called me in for tests results and had 5 pages- starting with the less severe (vitamin deficiency) and working towards more severe with each page. My sarcastic sense of humor cut her off and asked "So what's page 5? Cancer?" Page 4 was possible cancer. Growing up, cancer was the worst possible illness I ever heard about. Everyone knows what cancer is and everyone knows its bad. So if page 4 is the worst thing I can think of- what's page 5?

Page 5 was scleroderma. I had never heard of it before. She told me not to worry, that more tests needed to be done to confirm it and she would refer me to a specialist. Over the next year (this past year) I saw several specialists and was poked, prodded, tested and examined. You know its bad when your doctors are constantly telling you they hope they find cancer. Who hopes for cancer? If cancer is the scariest thing I can imagine, then what is worse than cancer going to be like? It's not cancer. Every test they did ruled out a major life threatening illness, and only confirmed the one they hoped I didn't have: scleroderma.

Scleroderma is a fatal auto immune disease. It's not contagious. They don't know what causes it and there is no cure. Apparently it has no set symptoms or treatment plan so they can't even clearly tell me what will happen to me or when. There is nothing they can do other than treat my symptoms and watch me decline as my body stops attacking outside invaders like its supposed to and starts attacking itself. They can't clearly tell me how long I have or what my quality of life will be. Its a progressive, degenerative disease. It's painful. I've already had an increase in my pain and symptoms from when it started a year and a half ago and its only going to get worse. The type I seem to have- 50% of people live 5 years. Best case scenario, I have 20- although its not likely. Either way I die young. 20 years from now I'd be 52.

So needless to say I'm scared. I don't think I'll live to see my kids graduate high school. I don't think I'll ever turn 40. I'll never be a grandma. I don't know what my life will be or how this disease will progress. I've already gone through so much depression, anxiety, and insomnia on top of the physical issues and symptoms I've been having. If it weren't for my amazing boyfriend who's stood by me through all of this- I probably would be at the bottom of a lake or something.

Few people know. I can't seem to be able to figure out how to tell my rl friends and family. How do you make that call? What do you say? "Hi. We need to talk. I'm dying. Not today but whatcha doin in about 5 years?" I just can't find the words.

So if anyone reads this and if you actually make it all the way to the bottom... Thanks for listening. I couldn't sleep and have no one to talk to at 6am so I thought I'd write...

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