Surviving with Sarcoidosis

Last year after being told for several months that I probably had lymphoma, dozens of tests and scans and worry later I ended up having a medianstonostmy (lung biopsy) and it turns out I do NOT have lymphoma but instead a rare auto immune disease called sarcoidosis. Once we had the proper diagnosis we began to form a plan off attack as my condition was very quickly spreading and causing very big problems with my ability to breathe. I was placed on a very high dose of prednisone. This steroid is one of those drugs that will save your life while slowly killing you at the same time. Right away my whole body began to swell. I gained a good 30 pounds despite watching my diet and trying to exercise the best I could with my breathing issues. My pulse and blood pressure reached very dangerous numbers and I needed to be placed on more drugs to fight these side effects. Next my blood sugar became erratic and I had to keep a close eye on it to try and avoid becoming a type 2 diabetic. After about six months on the high dosage I began to feel much better breathing wise. At this point I had a scan and it showed my disease was in remission! We began to slowly decrease my prednisone. About a month into the lower dosage my body went haywire. I began to lose my hair, my cholesterol went nuts and I was becoming short of breath again. I was ready to be done with this awful drug. As part of the sarcoid disease it has increased my risk for kidney stones. In 2014 I had 4 surgeries alone. Just when I think we are moving forward and getting things under control I had some bad lab results. My liver is not functioning properly. I am developing arthritis in all my joints and am in constant pain. I was sent to a rheumatologist to discuss using chemo as treatment. More blood work later and I find out I have another disease that is called CVID. Basically this does the same thing to your body the AIDS does, only it is not a sexual disease and is not contagious. There is no cure for either of these diseases and the treatments are expensive and pure hell. Living in Montana we just do not have a medical facilities that can adequately address all of my issues. We are trying to raise money so I can get to the mayo clinic where they have a team of doctors who specialize in sarcoidosis. I am 29 and to date have had 12 major surgeries. please help my raise enough funds to get me the proper medical care so I can grow old with my husband and children. Every day I fight a horrific battle with my own body and it is tearing my family and I apart. I really feel if I could get to the mayo clinic we can find a solution! Thanks you for taking time out of your lives to read my story and donate if you so choose.

Donations

  • Judy Clark 
    • $50 
    • 60 mos
  • Jolyn Ler 
    • $100 
    • 61 mos
  • Anonymous 
    • $50 
    • 61 mos
  • Leandra Hill 
    • $50 
    • 62 mos
  • Anonymous 
    • $500 
    • 62 mos
See all

Organizer

Nicole Tierney 
Organizer
Deer Lodge, MT
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