I’m alive! How about you?

It’s been an insane­ly long time since I gave this site its due. I sup­pose the real prob­lem with blog­ging about health prob­lems is that the peo­ple who know them best, by def­i­n­i­tion, have health prob­lems. I’d love to find some­one with whom to co-write this thing, so we could cov­er for each oth­er!

Any­way, I had an insane­ly long bad peri­od but I’m feel­ing bet­ter now. One fac­tor in the improve­ment was stop­ping Effex­or XR, which I’d tak­en for years. I didn’t actu­al­ly do that on purpose—It was due to an insane­ly irre­spon­si­ble doc­tor who refused to see me because of a screw-up in his office’s pro­ce­dures, not any­thing I’d done wrong. I had to just stop tak­ing it, cold turkey, which led to seizures and oth­er prob­lems. On the plus side, though, I’ve been far less drowsy and don’t need near­ly as many hours of sleep as I did before. (I’m actu­al­ly expe­ri­enc­ing some insom­nia, which isn’t good, but it’s a change.)

Any­way, my Social Secu­ri­ty dis­abil­i­ty claim was final­ly approved after over five years of wait­ing. They haven’t start­ed pay­ing any­thing yet, but that’s sup­posed to hap­pen Real Soon Now. I have to tell you, though—the Medicare thing is a con­fus­ing maze of choic­es, obvi­ous­ly designed by bureau­crats. You almost need to become a Medicare expert just to know what ben­e­fits are avail­able and how to get them!

For now, here’s a link to an arti­cle I found inter­est­ing:
Do Fibromyal­gia Pain Killers Make You a Like­ly Crime Vic­tim?

I don’t agree with all of the advice. Peo­ple in Geor­gia have been arrest­ed for hav­ing legit­i­mate­ly pre­scribed med­ica­tions because the med­ica­tions weren’t in pre­scrip­tion con­tain­ers. It’s a real nui­sance to car­ry the bot­tles instead of just what you need, and it prob­a­bly does put us at greater risk for crime—but is it worth being arrest­ed? That’s a Catch-22.

August 13, 2009 · Cyn Armistead · One Comment
Tags: , ,  · Posted in: From the news

Tips and Tools for Working From Bed

I’ve nev­er encoun­tered this web site before, but it was linked from a blog car­ni­val, and the arti­cle is pret­ty good: Because Sit­ting up is for Suck­ers: 70+ Tools, Tips and Hacks to Work from Bed

I still miss my lap­top!

And I have a pret­ty nice set­up, but can’t help drool­ing at this: the Ergo­pod 500. I’m not about to look at the prices, though!

June 27, 2008 · Cyn Armistead · No Comments
Tags: , ,  · Posted in: employment, Resources

Why Can’t We Think Well When We’re Sick?

This isn’t specif­i­cal­ly about CFS/ME or FMS, but I found it inter­est­ing, and I think it makes sense.

Why Men­tal Lethar­gy When Sick

Dur­ing an infec­tion, humans typ­i­cal­ly expe­ri­ence a set of phys­i­o­log­i­cal and psy­cho­log­i­cal symp­toms, includ­ing fever, con­fu­sion, decreased moti­va­tion, depres­sion and anx­i­ety that are accom­pa­nied by a slow­ing of move­ments.

These changes, col­lec­tive­ly known as “sick­ness behav­ior,” are the body’s way of con­serv­ing ener­gy dur­ing ill­ness so that an effec­tive immune response can be launched. This new study helps researchers fur­ther under­stand how cytokines com­mu­ni­cate between the immune sys­tem and the brain to pro­mote sick­ness behav­ior.

Since many peo­ple with CFS/ME have chron­ic fevers and oth­er symp­toms sim­i­lar to those of infec­tious ill­ness­es, I have to won­der if the results of this study will be exam­ined with regards to CFS/ME.

June 12, 2008 · Cyn Armistead · One Comment
Tags: , , , ,  · Posted in: Chronic Fatigue Syndrome, From the news

NOT related to FMS!">Abortion is NOT related to FMS!

I detest igno­rant big­ots. And I absolute­ly con­sid­er the fol­low­ing hate speech:

So like an HPV diag­no­sis in some­one would almost guar­an­tee that oth­ers would know the person’s poten­tial morals or lack there of, and HIV almost always denotes a gay man, a diag­no­sis of fibromyal­gia could poten­tial­ly indi­cate a woman who has abort­ed a child. Just a thought.

Gosh — so all those males who have fibromyal­gia were actu­al­ly born as women, and had abor­tions before they had sex changes and devel­oped FMS? Every­body who is HIV+ because of blood trans­fu­sions or oth­er issues is a gay man?

I’ve nev­er even con­sid­ered hav­ing an abor­tion. My child cer­tain­ly hasn’t had one, and she devel­oped FMS when she was nine years old!

I did com­ment at the blogger’s site, giv­ing her infor­ma­tion on all the proof that FMS does exist and that our pain is real. I don’t believe she’ll ever approve the com­ment, because she doesn’t care about the truth–she just wants to spread her nasty pro­pa­gan­da.

June 3, 2008 · Cyn Armistead · One Comment
Tags: , , ,  · Posted in: Fibromyalgia

Review: Women, Work and Autoimmune Disease

Women, Work, and Autoimmune DiseaseI read Women, Work and Autoim­mune Dis­ease by Ros­alind Joffe and Joan Fried­lan­der a few months back, but for some rea­son my review on Ama­zon nev­er showed up, and I didn’t think to keep a copy for myself. It seems to final­ly be there now, so I’ll put it here, too (slight­ly expand­ed).

This book is one the best I’ve ever found for those of us who have chron­ic ill­ness­es, but want to con­tin­ue work­ing. It goes beyond the stan­dard “cop­ing tips” to talk blunt­ly about pac­ing your­self, search­ing for a job, keep­ing a job, nego­ti­at­ing with your employ­er for accom­mo­da­tions, and being self-employed. Top­ics like “when do I dis­close a disability/illness?” are cov­ered by authors who have exten­sive per­son­al expe­ri­ence build­ing their careers despite chron­ic ill­ness­es.

The title does refer specif­i­cal­ly to women, but I think the book can also be very use­ful for men. Like­wise, there’s no rea­son to lim­it read­er­ship to peo­ple with autoim­mune dis­eases.

I’ll be buy­ing copies to send to some of my friends. I don’t plan to let mine out of my sight! I hope to get a copy of the accom­pa­ny­ing work­book soon, as well.

Joffe’s blog, Work­ing With Chron­ic Ill­ness, is also good read­ing.

May 29, 2008 · Cyn Armistead · One Comment
Tags: , , , ,  · Posted in: disability, employment, Resources