Posted 7/2/2007 2:22 PM (GMT -7)
I've been a recluse for a while. I know the rheumie thinks my CFIDS and fibro are just acting up. I've been sleeping crazy hours like from 11 till 1 pm and stuff, no energy, can't think. Really, really bad. I still can't go out in the bright light. I used to love going outdoors on a sunny day, hated rainy days. I don't know what's going on, and that's the frightening part. They didn't give me my blood work results, I see the hepatologist tomorrow morning and I forgot to call and get my liver levels faxed to him today, how how stupid. I don't think the ointment for my pigment is working, actually, it seems to be making it worse. My bf says no, keep trying. It's supposed to take a couple of months to work, but it takes forever to put the crap on. My bladder is acting up again and neck and back. my fourth of july choice is this, I can either go to my bf's rich bosses house and be outside all day and help setup tables and cleanup after fireworks and all, all day and night affair, or be alone at home another day. Some choice. My bf and son already made the commitment, saying we needed the money and his boss needed him and they don't want to miss out on hanging out at some rich guy's place. I feel really sad that I don't think I can go and be with them. I'm tired of missing out on everything. I just don't think I can handle it. It will be worse than my dad's wedding, since it will start in the morning with setup and not end until after 11pm and then cleanup starts. I thought of trying to drive down to see my mother, who I'm worried about, but it's a 5 1/2 hour drive and I don't think I can handle it and her fiance is very moody and it's not real comfortable staying with them. They have no guest room, just a sofa. My dad is out of town, and I could usually stay with him, but not an option. I will probably make myself go and work at this party and will probably hate it because I'll be too tired and people will treat me weird because I'm sick and they don't know it and they will expect more from me than I will be able to give them. I'm so foggy now, I can't remember anything. Then I stupidly commited to writing a newspaper article and possibly more freelance, before this all set in, and I will probably write one and no more. I'm just not dependable anymore, my health is too bad, my mind. It's so sad. The worst thing about this is that for 13 years now I still don't know why I keep going downhill and what exactly is wrong, why when I was a healthy 28 year old I was just struck suddenly with illness. The hepatitis, if I ever had it, is long gone, and the rheumie again said that there are things that can cause a false positive to hepc antibodies, since I've always been negative for the virus. I think maybe I'm not taking enough pain stuff, maybe that is it. I had to go so long without it, I can't tell when I hurt or not, I hurt all the time. Maybe it is just the fibro and cfids. I wish everyone here well. I feel like a baby, but I'm so sick of never getting a diagnosis. I'm gaining wait and craving sugar and my sugar is high. Maybe from the steroid cream. I'd take antidepressants now, but I don't think my liver can handle it and I don't want to be addicted to another thing.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments