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?
I finally have a disability hearing in September, but my attorney tells me the judge is rough and he takes 4-5 months to make a decision.
I need support more than ever. I'm not giving up, however, I can't do this alone. I NEED my people. I NEED your strength and love bc I don't have enough for myself right now.
I don't know what to do. I don't have a clue. Doctors, lawyers, cancer... My head is spinning and their words are falling upon deaf ears.... I don't know where to start.
Thank you for listening.
Thank you for taking your time to write an article about me. Thank you for portraying me better than I can portray myself. I really appreciate you spreading awareness. I sometimes get embarrassed after I've allowed myself to be vulnerable and become brave enough to hit post, after bleeding out my heart on this platform, but, in the end it's me. It's the life I have. And I struggle. And I've found that I'm not alone. And that makes me feel better.
So, thank you for reaching out. Thank you for your support. I am willing and honored to be of any help.
Hello Vanessa! Patient Worthy is a news source that caters to rare disease patients. We were moved by your story and featured you in an article on our site (http://patientworthy.com/2015/07/10/medical-funds-by-vanessa-garrett-gofundme/). We hope we have directed some people to your cause to donate! If you'd be interested in speaking with us or participating in an interview we'd love to create another article to help you get the word out and spread awareness of CVID. Let us know!
hi Vanessa. I don't know if you remember me. my name is Chrissy mawhinney. I too have cvid, thyroid cancer, and GI problems. I completely understand what your going through, well almost completely. my treatments every month just for cvid is $16,000 not to mention all my meds and dr appointments. I am having a hysterectomy in 2 1/2 weeks also. luckily though I have 2 children and was Able to get health insurance. I will donate to you as soon as I can. you have my understanding and empathy. if you ever need to talk, call me 678-670-3315, chrissy