My Experience

Hello, I wrote you a long story a few weeks ago and I do not believe it sent. I am a 29 year old mother of a 4 and 5 year old, last Christmas I could not understand why I kept getting ear infections and rash started on my face and then I was having problems walking down the stairs, the doctor could not figure it out for a while and then by January it quick became worst and quick, I then went to the Mayo clinic hostpital and my scabs were on my eye lids, around my bottom cheeks and chin, chest, fingers, back and front of thighs, back and butt checks, on top of that I could not lift my arms and also could not walk and was in tons of pain. they did a biopsy the first day but result would take a few days to come back. I was practically dying, my heart rate and blood presure were out of control but they would not treat me until they had results, they then sent me off to the surgury room to take a biopsy of my arm muscle and send it away for testing, finally after day of me getting worst they treated me for Dermatomyositis. It was a long awful road to recovery, I used to fall over and not be able to get up and my 5 year old would have to help me off the floor, I fell once and my arms did not work so as you can imagine I watched the floor as my face smashed into it. I would sit outside late at night when everyone was sleeping and cry and pray and I felt so ugly and hopeless, but even though this nightmare felt like it lasted forever, I believe my prayers we answered, it has now been 11 months since I was in the hospital and I hardly any visual signs of the disease, I can run and use my arms and pick up my kids and my face looks like me again, I have a few scars still but you really can not see them so I can live with that. I am still on predizone and cell cept and IVIG treatments but their is a plan in place to continue to lower everything and I hope someday to be off everything. What I want you to know is that if you are going to a Rheumatoligist than you have to, Dermatologist do not understand every aspect of this desease and will only get you topical stuff, you need more than that to fight this before it gets worst, I was lucky to go to the Mayo Clinc, every top doctor is their and they are amazing. Here is some of the medicines they put me on, The top medicines they treated me with were, acetic acid topical solution, triamcinolone topical cream, and 80mg (very high dose). The Acetic Acid is in a large bottle and is clear and smell like vinagar, in the hospital they would soak gause strips in it and rap it all over my scabs on my face and body and let them soak for about 20 min. (I looked like a mummy, but it felt like a spa treatment) then they would cake the Triamcinolone cream all over the scabs and I am telling you, every day I looked better and better, and I also did this when I went home and after maybe 3 months my skin went from looking like a monster to my again. Predizone, it is a love and hate drug, they first put me on 80mg a day which is a ton but it help my skin and muscles pretty quick, bad things about it are the side effects after being on it for a long time, so as long as they put you on it for a short time and then ween you off it should really help you, now I am on 15mg every other day. I was a very bad case so they had to give me a lot more other medications and treatments down the road for my muscles and pain as well so the other things may be a lot more than you may needs, I have to get IVIG Treatments, which is when they infuse immunoglibins into your blood stream to trick you immune system into being happy. These were a miracle for me, after ever infusion something would improve and my energy would get better and I am still getting them every 3 weeks two days in a row, at my home. I am also on Mycophenolate two 500mg tabs 2 times a day, so 200mg a day. and my dematologist gave me bunch of other topical stuff but I dont really think they are all that helpful. I was having an issue 5 months into it with starting to get depressed due to most likey predizone and well dealing with a disease so I finally just spilled it to my doctore and he put me on a generic zoloft and it help me a ton, I never had an issue with it before but I guess if you really need it it deffinatly helps. Also, when I found out I had this disease the first thing I asked and cried about was the sun, they would never answer me clearly on the subject, or else I was not listening but what makes me happy in life is the sun and going to the lake or the ocean or playing with my kids at the park, so I was devistated, now that time went on and I was getting better I wear really good sunblock, everyday and I still went to the lake this summer and the beach in californina, I was just careful about re applying sun block and not standing in the direct sunlite for long, and when I get off of all of the meds, I think it will be easier to enjoy the sun again someday. I live in the valley of the sun, Arizona, lol. So if you feel it is hard for you to speak to your family at least you know their are people hear that know how you feel and try to read your family a good article or more info about your disease so they know what you are going thru day by day, but I promise you if you put your mind to it anything is possible and I will put my disease in the past because I am going to get ride of it.