Okay so I have had been feeling pretty good for about two weeks that I was taking higher doses of prednisone. I even went camping at Garner State Park in Texas for 4 days. I was out tubing on the river with my kids every day and I even had enough energy to cook for them twice a day. It was so much fun and I felt like a "normal" mom. I expected it to kick my ass since I was out in the sun so much but nothing. I felt as great as a person with Lupus could feel!
Then the day before yesterday, I went bowling with all the kids for my mom's birthday. Believe me that it is not normal for me to have the energy for so many activities. Anyway, the next day I woke up with so much joint and muscle pain I could barely move! I also got sciatica! Now Lupus kicked my ass! The pain is not going away; not with Vicodine or Tramadol! I didn't even think I was exerting myself.
It sure was nice while it lasted! I have to say that at least I don't have to go to work! It's summer: the teacher rehab!
Girl I know exactly what you mean! A cpl months ago I started the same thing basically and it's so awesome to feel "normal" for what time we are given I cherish every moment! I'm now trying to come off it and it's been tough. I just want to stay on it forever but I know I can't. I def can relate to the pain afterwards. I'm so happy you had that good time as well :) I like your blog and have subscribed!
ReplyDeleteThanks so much...
DeleteI was on Prednisone for almost all of 15 yrs. At one time I was even on sixty mg. A DAY! I hurt all over especially after I'd been out in the sun for several hours. I remember even trying to tell myself that maybe it had gone away, maybe these people didn't know what they were talking about (Doctors) who I'd been going that I'd been seen by in the past years. I remember one time because my doctor ended up putting me in the hospital in isolation because my white blood count had gotten so low and they had to give me an injection every day to try to get it back up. The doctors don't prescribe us these meds for the fun of it! The sun is one of my worst enemies. I ended up with a sunburn and a blood clot from deciding was going to get a tan that summer: well by the time I got out of the hospital the tan had faded. I also have fibromyalgia, sciatica,degenerative disk disease, spinal stenosis, and arthritis that developed in the years following being diagnosed with lupus. The chronic fatigue syndrome is one of the least wearing on my mind. The cardiac and kidney problems are something to think twice about, aren't they? I was nurse. My first patient who died was a young woman who had lupus and died from kidney failure among other things. You can imagine how I felt when the doctor first told me that I have lupus. We have to spread understanding to the public. No new lupus medicine has been made in 50 yrs. It's time that research is put into lupus.
ReplyDeleteYou are right. One thing I find disturbing is how little people know about Lupus and even worse, how little they want to know. Since I have been diagnosed every rime I try to talk to people about the disease, I notice their body and face shift; they clearly become uncomfortable and always either change the subject or tell me not to focus on the disease. People insist on ignoring Lupus and I guess hoping it will just go away!
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