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Lupus, Loving Life and Paying it Forward...

Posted Mar 13 2012 3:45pm
 Several months ago, I started taking Benlysta infusions. I can honestly say that my energy level is better, but the pain and fever is still a 24 hour, 7 day a week battle. I guess one out of 3 isn't bad. The other thing I find is helping me is that I exercise at least 3 days per week. I still have major pain in the morning, but I have to say that, sometimes I push past the pain and do some stretching excercises just to get moving.
I also find that prayer to Jehovah and meditation on the Holy Sciptures does a great deal to combat depression and anxiety. I make it a point not to "confide" in anyone about every single issue that I face. I have had experiences where some people felt the need to "pity" me, and that is not what I need or want from anyone. When I'm ill, I want to be alone to deal with it. If I'm sick enough to be hospitalized, even then, I still want to be alone, except for my husband and Aunt. When people come to visit me in the hospital, I may feel the need to prop myself up in bed, and "entertain" them somehow. I don't need to feel that way, when I need to focus on getting better. In addition, I don't want anyone to use my experiences as their fodder. I defend my privacy fiercely, and that will never change.
Along with this new medication, Benlysta, there are major side effects, like migraines and during the infusion, I get a chill down to my bones, and my nose begins to run. Before the infusion, the nurse infuses Benadryl and Decadron, to decrease the sensitivity to the medication. When I first started taking it, after the infusion, later that evening, when I would urinate, I would wipe, and the skin around the meatus would bleed and the tissue would slough. Sometimes I would have to apply Desitin for at least 3 days after the infusion. Benlysta is strong medicine, but I find that it wears off at 3 weeks exactly! I'm going to see the Rheumy next month, so it will be then that I will ask her to change the frequency. From the beginning, this Dr. fought me about even taking this medication! The nerve! This is my body!
The information displayed in this blog are my own personal and truthful experiences with not only
Lupus, but also my life. Please consult your healthcare professional before applying any treatments or medications that I may recommend.


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