I have extremely painful mouth ulcers that open my whole tongue, of course when this happens I lose 10lbs or so. This would be great if I were overweight, my normal weight is 130lbs my height is 5/8. Last June I had the worse flare up ever, I have a history of fluid build up of the brain when I have a flare up. My right side of my face is permanently paralsyed. Once the fluid builds my balance is thrown off severely and I have to have assistance moving around, trying to sleep is difficult because I feel like I am on a fast moving merry-go-round which causes severe nausea.
During this major flare up I went to see a new rheumatologist, after reviewing my abnormal brain scan, he informed me that he felt that I have a year to live, he was very cold and insensitive, he put me on a high dose of methotrexate. If that were not bad enough, my youngest daughter was recently diagnosed with bechets in March, 2002. My husband is so very supportive and loving that he keeps me grounded, but I can tell he is major depressed.
We have started going to church on a regular basis, that gives me peace, but I try to hide my depression from my family. I am a small business owner and have been blessed with having more good days than bad. I own and operate a homeless shelter for women only, my business has saved my life in the sense that I don't focus on my problems all the time, when I constantly meet women that have go through such terrible life experiences.
Our daughter is very upbeat and energetic, her Doctor feels that because she has been diagnosed early she will not have such severe symptoms. Our faith in God has kept our family strong, we have a tremendous support system from close friends and family. However I would like to learn more about this disease and different methods of treatment.
To all of you that are suffering from this ugly disease I say to you all, STAY STRONG AND PRAY DAILY FOR STRENGTH, I WILL PRAY FOR YOU ALL. GOD BLESS.