A lupus survivor's cerebrations on living day to day...

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    Lupus "Balloon-Head" Ruins Another Dinner

    Was having such a good day, began cooking dinner. i have been waiting for a day I felt "smart" enough to make authentic spaghetti & meatballs for my son...but my lupus balloon head took over this evening. the results: a pan of crispy burned meatballs. I really want to cry. 2 lbs of good meat wasted. But mostly disappointed that I couldn't come through with the meal for my son. Until recently, he has been fending for himself. Actually he has been doing all the cooking since my brain began to deteriorate so much that I could not complete the steps to make a decent meal. I am still far from being able to manage cooking the way I used too, but I am improving. So on the days I feel clear headed I try to prepare some of the dishes I used too. Especially my son's favorites. Because I realize how little time I have left before he is off to college. Perhaps burning tonight dinner seems trivial to cry over. But for me, its a rare occasion for my mental and physical status to allow me the confidence to make a real meal. Today I promised my son I would make him whatever he wished. I began cooking feeling fine. Then that weird feeling of being heavy and light headed at the same time hit me. I had to go sit in my chair, thinking it would pass. Then my son comes in the room saying something about the smell. I suddenly became conscious of my surroundings again. Our apartment was smoky. I had lost track of time and what I was doing. I discovered I had let the pan of meatballs for the spaghetti burn to crisp. My son just reached over an gave me a hug, telling me it was okay. He could see I was about to cry. So I am trying to be patient with myself. Trying remind myself how far I have come. It wasn't that long ago I wouldn't have even attempted to roll up a meatball. It hurts that I can't even say when I will feel competent again to try this meal again. It may be tomorrow...or not. I try to just live in the here and now. Never commit myself to more than the present, because I can never predict my physical and mental abilities due the lupus.

    Nothing New from New Rheumy...

    Finally got to my second rheumatologist appointment. With all the good reviews made by all the other physicians I've seen, I have high hopes for this man. w discussed test done last visit. My WBC was high probably due to long term use of prednisone; all my antibody test were good, except double stranded DNA. But it wasn't remarkable. He is still considering Cellcept as a future option to allow reduction of prednisone dosage. Doctors concerned about my suppressed immunity took me off Cellcept last year during hospitalization for colostomy. We didn't even discuss Cymbalta. Actually, the frequency and intensity of my fibromyalgia pain has improved now that my kidney stones have settled down. I reminded him that my greatest concern is my neurological symptoms. Physically I am feeling more stable than I have in been the past year; but my brain continues to frustrate me. When I asked my new hematologist for an explanation for the myriad of neurological symptoms that still come and go, she suggested that a previous CVA caused some permanent damage that has upset the circuitry and chemistry. With the recent discovery of nodules on my thyroid during neurological scans and hyperthyroidism indicated by blood tests, I began to wonder how many "crazy" symptoms can be blamed on my glands. I had also heard that many lupus patients develop hyperthyroidism. I asked my rheumatologist whether lupus or my drugs were responsible for hyperthyroidism. He says that Lupus nor steroid responsible. Although hyperthyroidism is also autoimmune disease that SLE isn't a direct cause of hyperthyroidism. Patients with one autoimmune disease are predisposed to having another autoimmune disease. He wouldn't give an opinion on my balloon brain, until he's gotten the endocrinologist input on hyperthyroid.


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