Medical Funds

I am doing this out of pure desperation and necessity... I first want to say that I am truly grateful for the things that I have. A loving, supporting , family that  supports their 37 year old, non-government approved disabled daughter both financially and emotionally. I will die before I starve and I always have my  immediate needs met. Food, shelter, clothing etc... And I am infinitely grateful to my mom and dad for that. Without them...is unimaginable.... I have been sick for 10 years. When I turnred 26, I bought a home, owned my car, had an IRA., worked hard  for 17 years, traveled, enjoyed and participated in  life.... Suddenly, after a trip to Mexico within 3 months I went from 145 to 115...then 3 months later continued losing until I was eventually 102... I am 5'10". Everything I ate or drank, left my body... I was malnourished, my hair fell out. I had edema, I was chronically fatigued, weak, in severe abdominal and rectal pain that would leave me in tears and curled up in a ball enduring this unbearable, chronic pain in the bathroom bc I STILL worked in this miserable condition Bc I thought I had to. I was up countless times a night vomiting and chronic diarrhea , not to mention the several times a day I was going. All of this destroyed me. For 2 years, I suffered, in pain, bc the doctors didn't know. They thought it was my thyroid. They dismissed me bc I was so young. Then I had to switch jobs and I lost my insurance... I never knew how important insurance was until I got sick and had pre existing conditions. Over the next 2 years,  I tried every single kind of holistic doctor, diet, supplements, Chinese medicine...all kinds of crazy and expensive, completely out of the box , unconventional,  medicine..NOTHING helped at all. Until I was hospitalized in 2007 and diagnosed and treated with Crohn's. In 2008, I was in the hospital for a new surgery. Myomectomy with radical  appendectomy and bowel recessions and 2 blood transfusions, due to massive fibroids that grew back 2 months later. 2 years later, I had my 4 month old fetus sized uterus removed. I was also diagnosed with an immune disorder(CVID) that if left untreated is statically life threatening within 3-5 years. 2 years later, I had a radical nephrectomy due to renal cell cancer... This is due to an extremely rare genetic disorder that causes kidney cancer and also the cause of the fibroids resulting in a hysterectomy (HLRCC)..I have a final diagnosis of Crohn's, CVID, HLRCC and all of the defiencies that go along with it.  A week ago, I had a severely acute Chronn's flare up. I was given prednisone immediately. I was at my, all time lowest of 97lbs. .. I've since gained 5 lbs. I eat baby food and protein shakes and have a much stronger appetite with this temporary medicine.I am treated by the NIH for the HLRCC and am currently enrolled in 2 studies. They pay for my airfare, 4 days worth of scans and blood work and treatments, if necessary and a 50$ credit a day hotel, which is about 1/4 of the cost in Brthesda, Maryland.. My mothers airfare and the remainder of hotel, shuttles, tips, food, transportation are not covered. AND the time my mom has to take off work greatly effects our families ONLY source of income. I CANNOT GET GOVERNMENT AID FOR MEDICAL NECESSITY  BC I HAVE NO KIDS BC I HAVE A GENETIC DISORDER WHICH ROBBED MY CHANCES OF EVER HAVING ONE. .  I CAN NOT IN THE STATE OF FLORIDA GET OBAMACARE BC I MAKE NO INCOME. I CANT WORK BC I AM UNTREATED  AND THE 2 MOST IMPORTANT MEDICATIONS I NEED COST 8000$ A MONTH MINIMUM.. IVE BEEN DENIED DISABILITY 3 TIMES AND AM STILL IN A 2 YEAR PROCESS OF WAITING FOR AN APPEAL HEARING  AFTER GETTING AN ATTORNEY.... ITS ABSURD!! I NEED HELP.  I SEE 8 DIFFERENT SPECIALISTS.3 ARE NOT COVERED.. My mom pays out around $1500 a month to provide me with my health and well being. I have had to stay with them since October BC I've been so ill...She has sacrificed so much for our family. And It's still not enough. I need so much more in order to be healthy. . There is always something new and unexpected. Like contacts or glasses.. A new, used car....And dental work.... And extremely expensive healthy food I can eat...gas for the many weekly doctor appointments... Payments for uncovered services... Co pays. Attornies... The list never ends... Maybe getting income will help me get OBAMACARE...FLORIDA REALLY SUCKS AT TAKING CARE OF THOSE WHO TRULY NEED IT. Until then, I am eternally grateful. I know everything will be ok,  for a greater goodness I AM ON THE ROAD TO RECOVERY. ..I WILL BE OK. There is much more intense suffering than my own.... I'm reaching out is all. Vulnerable and willing to do whatever it takes to heal mysef. It's time for me to fight. I am my full time job. Anything helps right?