I was diagnosed with Lupus in 1998, and my doctor died later, and the new doctor did not believe i had lupus, because the blood tests revealed only a mild case of lupus was possible. Went into a major flare a few months ago, and asked my doctor for plaquinil. He prescribed it, but also ordered Lupus blood tests. these tests were very very positive and I was sent to a rheumatologist. the Rheumy as you call them ordere other tests done because of symptoms. He found that I had Sjogren's Syndrome, and I had no idea what it was. He said it was a variation of Lupus.
So I started looking on the internet and found this forum, which I feel is lucky for me. So many of you reflect my symptoms back to me, and it comforting that I am not alone. Many others out there who go through the same thing that I am facing on a daily basis. I am taking 400 mg of plaquinil now, and hope that it will help. I also have my own little drug store in my kitchen cabinet. Host of things I am being treated for. Most recently a heart attack.
Thank you, all of yoiu again for your listing of things. It really helps.
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Thank you for responding to my questions.
Yes the doctor has made an appointment for me at my opthamolotist's office this coming Wednesday. And I have medicaid so it is all paid for. I am very fortunate to have medicaid at this time.
My mother had a massive stroke in 1990. I took care of her in my home til she died in 1996. After she died it was like I had been saving my own illnesses til she died. I had a double by pass heart surgery in 1998, breast cancer and mastectomy in 2000, a stroke in 2002, and a heart attack this past October, 2007. Medicaid was approved for me after the first heart problem, so I am very fortunate to have medicaid early. I had lupus flares intermittenly during this time, but none as bad as this one.
Cutting down on the stuff that I do physically was the hardest for me to do. I was so active physically when Lupus was not doing so much to me. I could cut my own grass with a push mower, and did so for a long time. I would clean my house really good, so that I could cut the grass and be sick for two days after like I had the flu.
At one point, I had my nine grandchildren here at my house everyday. I would send them to school, pick them up from school and tend to them til their parents picked them up. It was too much. Eventually I had to admit that lupus is stronger than I am, and I had to admit that I really did have lupus, and I really did have to slow down.
It is really hard for me psychologically to do this. but I have to it seems, or be too sick to do anything at all. Today I work for 15 minutes in the house, and rest five minutes. this way I get my house clean...........well tidy, not really clean. during the flare I can do some of this. this flare has been so different. I have lost 26 pounds in a very short time period. the weight I could stand to lose, and that was not a bad thing. but the weakness, nausea, dizziness, loss of strength hit me really hard. It has never been this bad before.
But plaquinil seems to be working to take away the worst of the physical exhaustion and nausea. A lot of my problem with Lupus has been denial I think.
I am cherokee, and my traditional spiritual beliefs are different from many people. but my faith tells me that when I do my best Creator will do the rest. It is recognising what my best is that gives me the problem. Some days I can wash dishes, and that is all I can do. Some days I can sweep an mop the kitchen floor, and some days it has to stay dirty. Sometimes the best that I can do, is nothing at all physically. Sometimes my best is watching tv all day and resting.
Thank you for reminding me of this. To have someone tell me this, as you have done, is like getting permission or approval for being unable to do things sometimes.
I am hoping that my eye test will be good and that I can continue to take plaquinil. My rheumatologist also told me it was wonderful medicine. I worry though. I do not know that I could cope well with the loss of my eye sight. some of you seem so strong to me, and I feel weak to myself. but all of you help me so much, and maybe this will help me to get to the place I need to be with Lupus and Sjogren's.
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
Post Edited (Lynnwood) : 8/10/2008 2:57:21 PM (GMT-6)
Ginny, thanks for starting the thread. You are so thoughtful!
Hi Hester, Carol/okie here. I won't say much I just got back from being without a computer for 2 months so I'm way behind on what is going on. I just wanted to say hello. I'm glad you found the group. You will get a lot out of it. I know I do.
Sorry this is late but welcome to the group!