Hey all,
I know a lot of people don't really understand Auto Immune disorders, or the people who have them. There are times that if I feel fine and look fine and people believe there is nothing wrong with me, and that is great! Unfortunately though there are times when I get a Lupus flare and I can't function. I haven't had a bad flare for a long time, and I was enjoying my time as a "Normal, healthy, human being" it was great! Well Sunday Lupus reared it's ugly head and pulled the rug right out from under me. I have been pretty much bed bound since Sunday, I haven't even been well enough to sit up and get on the internet until today. I wrote a general email to my friends and a couple of them thought I should write a blog so others would know what I was going through. Some of it I sent to Pinkers, but there is more at the end.
Thought I'd try to drop you a line while I'm able to sit up. I had emailed you I was going on a date with Hubby on Sunday. Well we went to the church marriage group based on the Movie Fire Proof, it was good, but I wasn't feeling well, I mean really not feeling well. My Lupus pulled the rug out from under me for sure. After the church meeting was over we had origionally planned to go to dinner, but I was really not feeling well, I'm not sure how I kept it together at church at all. We drove home, I took off my jacket was walking to my room to hang it up and I blacked out, passed out whatever. Hubby found me and picked me up off of the floor, I didn't even have the strength to walk, so he carried me to the couch and I was just out of it. Monday morning I woke up and I went to the den, I try not to spend the day in the bed ever, no matter how bad I feel, I was laying on the couch and just could not keep my eyes open, I felt like someone sucked the life out of me, everything hurts, I had NO appatite, I'm eating next to nothing (I had a small cookie at the school today, but that's it so far), fever and chills, I'm not living or even existing right now, this is the worst I think I've ever felt, I didn't even have the ability to stay on the couch, I went back to bed and slept all day monday, today I made it out to the couch for about an hour at 10:30am then back to bed until 4:30pm. I got up because the girls had to go to school tonight and meet their teachers, I don't know how I made it through that either. I'm home now, I have 300 emails that I haven't checked, and I think it's back to bed I go. At some point I guess tomorrow, I hope, I have to take the kids to buy their school supplies, they start school on Thursday. Ugh. No doctor's appointment. It's my Lupus, not much anyone can do about it. I'm just really really wiped out. This is the longest I've been awake in days. :0) Hopefully that is a good sign. The skin on my upper arms feels like it's on fire again, I hate that. I'm very wiped out, no appetite, slight fever, chills, burning sensation on my skin, joint pain, muscle pain, (although some of the muscle pain is from riding on Saturday) all Lupus symptoms (well I'm not sure about the burning skin sensation part, that is new, but it is probably an inflammatory problem just like everything else). I just basically feel really really lousey. :0) I'm trying to just take it easy, well I don't really have a choice, my body won't let me do anything right now. I went to the school tonight, for back to school meet the teachers night, but I wasn't really there, I filled out forms but found it difficult to make eye contact and percieve what was being said. I think it was taking all of my energy to remain standing tonight. Not even my brain works right. I feel very depressed, being sick makes a person feel very hopeless, like being in the dark not sure if the sun will come out again.
Well that is a day in the life of a Lupus flare up. Hopefully I can write more coherantly when I am feeling better. I think I will be heading off to bed again right now.
Michele
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Hello Michele, First I'd like to thank-you for Your well wishes. Second, I pray for You!. My cousin has Lupus and I know how it affacts your life. I also Know how hard it is to keep up the fight. I too have periods of depression,It goes with the territory. Don't knock the sleeping part, it's one way our bodies heals. If Your body can handle moist heat it does help relax your mussles and can be a temporary bandaid. Please take care, andd rember to be kind to Yourself. Hang in there! Liba
Hi, I was searching the Internet and found your blog. I also have Lupus, and am going through my second full body, kick you to the floor flare. I was diagnosed with this in 2003, but have been very lucky, as it was only limited to my skin and a few joints and such. I have my first full blown flare a year or so ago, but thought it was the flu. This time I knew differently, flu has never felt like this. I feel exactly as you have written! I was in denial, and didn't want to admit that this was what Lupus was like. I hope you answer back to this, I know you posted awhile ago.
Kendra
Hi Michelle,
I was diagnoised with Lupus January 1966. I became ill weeks before Thanksgiving, 1995. I felt so bad eventually I tool a sick leave from work because I was too weak to get out of bed. My doctor at that time began to perscribe medication for me without seeing me; pain pills, pills for dizziness, etc. Although the medications were not working I continued to take them hoping he would find something else to help. I spent my days going back and forward from the livingroom recliner to the bedroom. Like you. I had slight fevers, body aches, I was weak, my speech was slurred and my comprehension was not as it should have been. My skin rash was so severe the doctor said it was Shingles. I have flare ups often.
I totally understand your pain. It was very difficult to leave my job of 18 years due to Lupus and all the drama that comes with it. The only thing that ease my aches is a hot shower. I do struggle to stand up in the shower but after a while, it feels greatttttt!
Shirley
SLDunn,
Hey all, so glad you have found this site. So much has changed since I wrote this. I have been eating healthier, walking almost every night, I've lost 70 pounds, and I have been making sure I get enough sleep. I have been feeling so much better in fact that I took a new job. It's been keeping me very very busy. I still have bad days, still have aches and pains, and the issues that are a fact of life, but I have been doing really well since I started sleeping appropriatly. I will be prayiong for you all. I hope you all can find some relief also.
Michele
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