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feeling down

I think I'm having a flare. My hair is falling out, I'm really tired, I've had a fever for like four months and my neck and hands ache. I am especially upset because I've been in remission since 2001. Doctors ran a bunch of tests and only found a uti and my sed rate is 40. They put me on antibiotics for the uti last week but I'm feeling worse.

Okay, enough whining!! I was wondering if anyone knows of a diet that is supposed to help lupus or knows of things I shouldn't eat because they can make my symptoms worse.


( 2 comments — Leave a comment )
Sep. 20th, 2006 03:59 am (UTC)
lupus crap
I know how you feel, like some one ripped the rug out from under you! I was diagnosed with Scleroderma in 1993 and battled that for years. No one believed me that I was sick. So no, your not going nuts. Then this year, 2006, I was again diagnosed with scleroderma and lupus. I went crazy. My hair fell out in 21 days and later on my eye brows and lashes went south, and the hair that was left in (only 20%) went totally white. I have big ugly rashes all the way up both arms and hands and the pain I am in is so bad that some days suicide is an option (no, I would never). And as all this was going on my parents decided that they were going to play ostriches and stuck their heads in the dirt. I didn't look sick and no-one could possibly have all I have. My brother said i was evil and to stop faking it or I would live to old and bitter. I had a mild stroke at 23, I have hyperthyroidism, high cholesterol, scleroderma, lupus, fibromyalgia, and allergies to almost all antibiotics. I am taking tranqs to keep me normal and toradol to try and keep working. I also work full time. As for a miracle diet? I try to eat what will stay down and keep up with veggies and whole wheat goo. I lost a big amount of weight as well. I suffer from extreme fatigue and I find that we have to adjust accordingly, sleep when your body needs it and modify your life to how you can manage. Don't let some one who doesn't understand what you are experiencing make you feel bad because they can't deal with illness. This is not you and my fault. Surround yourself with lots of positive people and things. I hope you do well. Try to stay positive and find that happy place with in. Stay away from the illegal drugs, they won't do you any good. Where mitts when shopping that will protect your hands when touching cold things. I also have Renauds so lots of pain. I am 44 and only got sick in April 2006. Good luck to you my friend.
Sep. 20th, 2006 05:34 pm (UTC)
Re: lupus crap
Yeah, my mom played an ostrich also. I was treated like a hypochondriac while growing up. Even as an adult I have trouble letting people see me sick. Most days I pull it together pretty well so that no one notices. It is funny, every time I read something on the net or my docs ask me questions about symptoms, I realize I've had most at one time or another and I think I convinced myself that it was just normal for me. I put off having an abnormal pap test for two years because I figured it was just something strange with me. Ummm cancer!
Working full time is challenging at this point. I'm running a flower shop practically by myself and the thought of doing it by myself for homecoming and the holidays makes me want to cry. The ironic part, my boss's best friend died from complications from Lupus. You'd think she'd be a little more sympathetic. I recently developed renauds. Its a little strange! Purple nose, feet and fingers.
I take a nap almost every afternoon. For a school project my son had to write in a paper what I'm good at. He said sleeping. Every time I think about it I want to cry.
I try to stay positive and recognize that most people have it alot worse than me. I've been going to the neuro alot lately because of headaches and the mri found demyelinating. I go in for more tests tomorrow. I'm refusing the spinal tap because I don't want to think about the results. Thanks for listening!
( 2 comments — Leave a comment )

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