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@janicebengtson

I am so sorry to hear about your health issues and diagnosis. I was diagnosed a year (just recently) after my twin sister was diagnosed with vasculitis (p anca positive) autoimmune disease affecting her kidneys. She went through hell trying to get help from local doctors. they blew her off as she got worse and worse. We finally got into mayo and just in time. That was a year ago. She is stable now. But I now have mixed tissue disease. I have lost 15 lbs in the last 2 years and doctors kept thinking I had body image issues and just wasn't eating.. Right now I only weigh 89 lbs. I usually weigh 105. I had such terrible neuropathy - my body felt like it was on fire. I started getting really bad headaches, ending up in the ER many times. I had headaches sometimes 8 days in a row!. I just saw a neurologist and now have nerve damage in my feet. I was just put on prednisone and gabapentin, so I hope I can feel better. I have been exhausted for over 2 years. Things just weren't right. my local doctor thought I just wasn't eating enough. I was so frustrated. tonight my feet burn and tingle, I can't sleep and I worry about my future. I applied for a job of my dreams in the place of my dreams before this diagnosis (knowing something was wrong) I am not sure if I would have the energy to do it.. and it may be too soon to take on something new and move 1400 miles. But I know people travel to Mayo from far away several times a year.. I feel that for my sister and I- our dreams just went down the tubes. We lost both parents in the last year and half as well plus our dog has cancer.We are both sad with having to deal with our illnesses, the loss of mom and dad and soon our precious Potter. We both thought that after mom and dad were gone, it would be our time to pursue dreams.. (we took care of our parents for 10 years)I hope that there is some light at the end of the tunnel and that we can be happy again and feel somewhat normal. Prayers appreciated.. since I can't sleep, I have been taking benedryl lately. hopefully that will kick in. Any suggestions on getting sleep? I couldn't sleep before taking prednisone and now it is really bad! I would appreciate encouragement from you all. Do any of you know of a support group which meets in person in Minnesota? I just joined this group as I am needing support. I live alone so I have a lot of time to think about stuff? Are any of you on antidepressants? thanks for any input and support.

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Replies to "I am so sorry to hear about your health issues and diagnosis. I was diagnosed a..."

I also wish there was meeting in person groups. It would actually help much more. But for now we are here for you. I used to have sleeping problems too and the prednisone dose make it worse. Try to drink it early morning and not at night. And if you have to take at night then try nature meditation music to relax your mind and body. It seems to help as I was having vivid dreams when I did sleep. And it helps a bit. I did loose weight before the prednisone because of all the vomiting. Now I keep gaining since they gave me prednisone and I don’t even eat unhealthy so I don’t know why I’m gaining I mean I gained 10 kg in a month and before my weight was healthy at 68kg. And I’m mostly swollen up or my body is holding water back. This morning my kids woke me up at 8am and I’m so tired..after a having a bowl movement my whole body is shaking like I’m in shock and I’m nauseous. I have the same problem under my feet as you. And I get constant flare ups that becomes more painful everyday I do get that depression sometimes. But it’s good to not let the depression get hold of you in a bad way. Try staying positive do things you like to do that wouldn’t make you feel worse. You not alone. And my prayers with lots of love are with you and your sister.