Face 1530

It’s a long story so sit back and 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.
Wisconsin, United States of America

One Response to “Melanie”

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

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