gsm3846
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I find this to be a very strange disease. When I was first diagnosed, I remember my cardiologist (one of many doctors I was seeing to figure out what was wrong with me) said "Oh, Gail, I'm so sorry!" I remember telling him it was okay, at least now I finally had a diagnosis and knew I wasn't crazy with all these symptoms. I continued to work - I worked in ICU and while I was constantly at the doctors office, having severe migraines with it, getting sick and all, I survived. It seemed to go into remission, or at least, partial remission for years and I would only have the slightest of symptoms. It started getting bad some years back and I finally had to retire. Since I adore animals, I started my own business taking care of pets when their parents were not at home. I figured not only would this bring in extra money for now I had no health insurance, but it would be something I love and I could control the hours I worked. That was almost three years ago. The past year I am really in a lot of pain on a daily basis with the RA - my doctor says it has hit the muscles and tissue as well as bones. I'm on Methotrexate four times a week and that drug makes me sick to my stomach. My kidneys don't work the way they should - the lupus is affecting my liver - my white blood cell count is in the toilet and my doctor says I can't get sick or it could be devastating and I can't take a flu shot to help prevent that. Most medications I can't take because the lupus has caused extremely high blood pressure along with the other problems. Now, two months ago, I developed, literally overnight, a twitching in the corner of my eye and my eyes are always feeling gritty. Doc says it is because my mucous membranes in my body are drying up. It is like reading a book and not knowing chapter after chapter what is coming next. I used to sleep approximately five to six hours a night all my life. Now, my favorite time is to go to bed, or to lie on the couch and take a nap. I get so tired doing the simplest of things, and when I do, I aggravate the pain even more. Does any of this sound familiar to any of you? As I said, the most difficult thing is trying to get through a day while those around you, who don't understand lupus and who look at you and don't see that you look sick, don't understand. |
Lupus Support Forums
Can't help you with the suffering but I feel for you I have Discoid Lupus and was diagnosed when I was 16 - 35 years ago I have fought the rashes for years and had a active one on the head about a week ago or so - I decided to lose 20 pounds and changed my diet excluding red meats, sugar, bread, pasta and including salmon oil,green tea and a multiple vitamin and I knowticed today that the rash has scabbed over this time I did'nt take any medicine or use the creams, or get the shots around the rash. So I don't understand this disease at all. My blood tests have boardered Systemic in the past but I have never had systemic symptoms. Although I have active and remissive times. God Bless and Keep in there.