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 · 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 · 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 · 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 · 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 · One Comment
Tags: , , , ,  · Posted in: disability, employment, Resources

CFS?">Oxygen for CFS?

A research abstract from Dr. Paul Cheney offers an inter­est­ing con­clu­sion.
Oxy­gen Tox­i­c­i­ty as a Locus of Con­trol for Chron­ic Fatigue Syn­drome
“We con­clude that CFS is an oxy­gen tox­ic state and that oxy­gen tox­i­c­i­ty sta­tus appears to deter­mine out­come in ther­a­peu­tic tri­als and is there­fore, a locus of con­trol in chron­ic fatigue syn­drome.”

The pos­si­bil­i­ty of an effi­ca­cious treat­ment for CFS is excit­ing. I’ll be watch­ing the news for more infor­ma­tion on this angle.

May 27, 2008 · cyn · One Comment
Tags: , , , ,  · Posted in: Chronic Fatigue Syndrome

Fibromyalgia or Depression?

There are many peo­ple, espe­cial­ly doc­tors, who claim that fibromyal­gia is just a symp­tom of depres­sion. I’ve had both, and I know the dif­fer­ence quite well. They are very, very dif­fer­ent.

Being in pain all the time can cer­tain­ly lead to depres­sion. That’s just log­i­cal. There are, how­ev­er, peo­ple who have fibromyal­gia who are not clin­i­cal­ly depressed. Depres­sion can also man­i­fest as phys­i­cal pain, but it is does not meet the cri­te­ria for fibromyal­gia.

I was treat­ed for depres­sion for years before I devel­oped FMS, though, and I tru­ly believe that if I’d got­ten prop­er treat­ment for men­tal health issues in my child­hood (post-trau­mat­ic stress dis­or­der and all the com­pli­ca­tions it brought, includ­ing major depres­sive dis­or­der) I prob­a­bly wouldn’t have devel­oped FMS.

I nev­er have trou­ble dis­tin­guish­ing between the two, or between either of them and CFS/ME, which I also have. They’re all quite dif­fer­ent.

With FMS, the pain caus­es fatigue, and togeth­er they can (but don’t always) have an affect on your emo­tions. You may feel like doing some­thing, but your body absolute­ly will not coop­er­ate. There have been times when I’ve been feel­ing great, gone out to do some­thing I was SO look­ing for­ward to–and near­ly col­lapsed in the mid­dle of every­thing when my body said, “All right, that’s it, no more. Done. Where’s the bed?” (We’ve joked that if I ever man­age to get a scoot­er or elec­tric wheel­chair, it will have to have a remote con­trol fea­ture so that Sam can steer me on home when I’ve passed out.)

But seri­ous clin­i­cal depression…it doesn’t mat­ter whether you’ve got the phys­i­cal ener­gy or not. Log­ic doesn’t mat­ter. Know­ing that you’d feel bet­ter for hav­ing a nice, hot show­er is utter­ly irrel­e­vant. The fact that the tele­phone ring­ing is con­tribut­ing to your headache, and you could make it stop by mere­ly lift­ing up your arm up push­ing a but­ton, is irrel­e­vant, because lift­ing your arm would take too much damned effort. Yes, some­where, on some lev­el, you may know that you’ll lose yet more func­tion for not get­ting up and doing your exer­cis­es, but it’s less impor­tant than star­ing at the ceil­ing, or the pil­low, or what­ev­er is in front of your face right now. Not that you real­ly make any kind of con­scious val­ue judg­ment or any­thing, but the star­ing has iner­tia going for it. Even if noth­ing IS hurt­ing, even if you have all the ener­gy in the world and you could do any­thing you just don’t care.

Remem­ber that, the next time you hear some­one claim­ing that FMS and depres­sion are the same.

May 24, 2008 · cyn · 4 Comments
Tags: , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia, Pain

Interview: Chronic Pain and Sex

The inter­view we did is up!
Chron­ic Pain and Sex: a Couple’s Gen­tle Bat­tle With Fibromyal­gia

I’m pleased with it. There are very few, most­ly imma­te­r­i­al inac­cu­ra­cies.

May 14, 2008 · cyn · No Comments
Tags: , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news, Pain

FMS/CFW Awareness Day!">Whoops! Yesterday was FMS/CFW Awareness Day!

I intend­ed to post and maybe even try to get a pod­cast out, but end­ed up using my ener­gy to do an inter­view with a reporter. I don’t know when the piece will come out (it wasn’t for aware­ness day–that was just an amus­ing coin­ci­dence), but I’ll let you know when/if I hear any­thing.

She also inter­viewed Sam, since the top­ic was “fibromyal­gia and inti­ma­cy.” He’s so won­der­ful!

I hope all of you had a great day 🙂

May 13, 2008 · cyn · No Comments
Tags: ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia

Special Request to Fibrant Living Listeners

Edit: THANKS TO KATIE, we found back­ups of the pod­cast files we were miss­ing. Thank you Katie!

This is Sam. I am the pro­duc­er of the Fibrant Liv­ing pod­cast that Cyn­thia writes and records.

The lack of down­load links on Fibrant Liv­ing #1, #2, and #3 are my fault.

I thought that Libsyn’s archive was in per­pe­tu­ity, but it wasn’t.

Now that they’ve done spring clean­ing at Lib­syn, Fibrant Liv­ing pod­cast #1, #2, #3 are all gone. I have no backed up copies of these pod­casts. My hard dri­ve crash in the sum­mer last year, cou­pled with Cynthia’s lap­top death, means that we as a fam­i­ly don’t have any extant copies of these pod­casts.

If you have these, please let me know. Com­ment here, or send me email at bearsgrove@gmail.com.

Thank you very much.

March 25, 2008 · cyn · No Comments
Posted in: Podcast, Technical