A.S. Face 1530: Melanie

Face 1530

It’s a long story so sit back and relax..lol. My name is Melanie, am 30 years old, and am sick and tired of hearing what an interesting medical case I am. I live with my amazingly supportive boyfriend Tye, 29 and work full time as a registered medical assistant in dermatology. I have been interested in health care from a very young age and started working in the field at age 14. I have an amazing family including my mother, Jennie, brothers, Brandon who is married to Nicole and has 2 daughters Piper and Ripley, Brian, and a sister, Stephani who is engaged to David and has a son, Davey. I’m so blessed to have the family I have. My father passed away last year from a massive heart attack, but prior to that he was also very supportive and concerned about my health since he had psoriasis and migraines.
 I was diagnosed with Ulcerative Colitis at a very young age of 4, but because I was so little I did trials of medications and blood transfusions until the age of 6 when they would allow me to have surgery. So at age 6 I had a total colectomy with an ileostomy then the take down surgery. I’ve had a long history of migraines starting at the age of 12 which I took NSAIDs for the pain. While in high school I had 2 very severe allergic reactions to Ibuprofen and Aleve, and was told never to take Aspirin because of my colectomy. So this meant the only thing I could use was Tylenol for pain control. While in college one morning I woke up with extreme pain in my buttocks with weakness in both legs to the point I couldn’t get up to walk. I called my parents to pick me up and take me to the ER. Doctor appointment after doctor appointment I was told it was just back pain and was given prednisone taper packs for a few months before those stopped working. I ended up failing out of college because I missed so many classes, not being dramatic here, I literally couldn’t walk. I finally saw a Spine doctor who told me for months that I was just a drug seeker because my xrays and MRI were for the most part normal. So at the age of 18 I had to drop out of college, go on disability, and went to physical therapy religiously for 9 months and ended up coming out with more pain than going into therapy with. He after 9 months sent me to a pain clinic where the doctor did SI joint injections and imagine this the pain went away within a day! However after 2 weeks the pain was back and returned to the clinic for another injection. After 3 injections in 6 weeks the doctor told me it was no longer safe to continue with injections and clearly something else had to be going on. I was referred to rheumatology where I was immediately diagnosed with ankylosing spondylitis. Why it took almost a year to diagnosis is unbelievable but I know others have waited longer to get that diagnosis. I started with Humira, then Enbrel however both injections gave me severe site reactions no matter where I injected I would get a bad rash, once it turned into cellulitis. I was then put on Remicade and what a lifesaver! Before starting the remicade I had been trying for a baby and was told because of my health issues and previous surgery it would be hard to do, I was on Clomid for a year with no success and couldn’t afford to continue. In 2010, many health problems occurred. I had multiple pleural effusions, along with a blood clot in my right arm. So again, now on Coumadin (can’t take NSAIDs or ASA), found out I have Factor V Liden (blood clotting disorder) and a Patent Formen Ovalue (PFO). I continued the Remicade with only 1 handful of flares. In 2014, I again had more pleural effusions and it was determined that the Remicade had thrown me into drug induced lupus. So after almost 10 very happy years on Remicade I can no longer be on the TNF inhibitors. I was on Sulfasalazine with absolutely no relief. The only thing I have now is SI joint injections and pain control with pain management. I also have been told I should not try for babies because of all the previous reasons. I have started a campaign with my boyfriend to help raise money to assist in in-vitro with a surrogate for me to fulfill my dream of having a baby. After all the pain of these stupid diseases, it’s no where near as painful as hearing that I can’t have a baby on my own and it’s going to cost $30K. I would love to hear suggestions from what others are trying. I tried multiple diets in the beginning, gluten free, sugar free/low sugar, high protein, etc. Nothing seemed to work. I do love swimming it’s about all I have going for me. Suggestions are welcomed. If you could please share my story along with my campaign I would greatly appreciate any help! Sorry for the long story, but it’s so complicated all I ever hear is how interesting my life has been. www.gofundme.com/o9y790
Melanie
Wisconsin, United States of America

One Response to “A.S. Face 1530: Melanie”

  1. Dear Melanie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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