Being an active part of your own health care team, part I

Peo­ple who have chron­ic or com­plex health issues need to take an active role in their own health care. That does­n’t come nat­u­ral­ly to every­one, and in fact it runs counter to the tra­di­tion­al way of inter­act­ing with “Doc­tor God” that I, for one, learned from my own par­ents. In this series, we’ll talk about some of the things we can do to take an active role in our own health care.

First, we’ll talk about med­ica­tions. Many of us take a cock­tail of med­ica­tions and sup­ple­ments every day, pre­scribed by every­one from our pri­ma­ry care providers to pain man­age­ment spe­cial­ists, rheuma­tol­o­gists, aller­gists, and neu­rol­o­gists. Keep­ing up with them can be trou­ble­some. Just remem­ber­ing to take them can be dif­fi­cult!

I’ll be hon­est: if I don’t set up my big week­ly med­ica­tion box as well as my small­er one once a week, I’m just lost. I found it online (I no longer recall where) and it is divid­ed into nice, large com­part­ments with four sec­tions for each day of the week. The lit­tle box is just for my thy­roid sup­ple­ment, which has to be tak­en as soon as I wake, apart from any­thing else and before I eat any­thing. I use those box­es and alarms in my phone to remem­ber to take my meds, and I’m ful­ly com­pli­ant. Before I set up that sys­tem, I just could­n’t man­age to remem­ber any of my med­ica­tions until I was already in real­ly bad pain or hav­ing symp­toms that remind­ed me of some­thing else I’d for­got­ten to take.

If you set up a med­i­cine box and reminders, you only have to think about what to take when once a week. You can even get a care­giv­er or oth­er helper to do the set­up for you, if nec­es­sary. I usu­al­ly check my drugs a cou­ple of days ahead of time to be sure I don’t need any refills.

Speak­ing of refills, run­ning to the phar­ma­cy can be real nui­sance when you feel like crap. It’s so much nicer to have your med­i­cine come to you! If your health plan offers a mail-order phar­ma­cy option, check into it. It can save time and mon­ey, since most health plans offer low­er co-pays when you use the mail-order option. Add in the fact that you can often get a 90-day sup­ply of med­ica­tion rather than a 30-day sup­ply that way, neces­si­tat­ing few­er refills, and it’s a no-brain­er. Some drugs, of course, are lim­it­ed so you can’t fill them that way, but use it when you can.

It’s impor­tant to keep every mem­ber of your health care team up to date on the treat­ments you’re receiv­ing, espe­cial­ly the med­ica­tions and sup­ple­ments you take. It’s also impor­tant to have a list with you, in case you’re in an acci­dent. If you get in the habit of doing so, you’ll nev­er again have to rack your brains while try­ing to remem­ber how that weird name is spelled or what the exact dosage of those three dif­fer­ent white pills you take is. That’s just not what you need to be wor­ry­ing about dur­ing an emer­gency, espe­cial­ly.

Good doc­tors will look at your med­ica­tions before pre­scrib­ing any­thing new, check­ing for known inter­ac­tions, but few of them are real­ly well-edu­cat­ed regard­ing med­ica­tions, and too many of them just know what­ev­er a phar­ma­ceu­ti­cal sales­man has told them. That’s why a good phar­ma­cy with a phar­ma­cist you can trust is vital. I can­not stress this enough: get all of your pre­scrip­tions filled at one phar­ma­cy!

Even with a good phar­ma­cist on our team, it’s extreme­ly impor­tant for us to read up on the med­ica­tions and their inter­ac­tions. Read what the phar­ma­cy gives you with your pre­scrip­tions, but also con­sid­er using a site like Medi­guard to track what you take. They’ll let you cre­ate a pro­file and save it, then they’ll noti­fy you of any new infor­ma­tion about your drugs, like recalls or new notices regard­ing inter­ac­tions. All you have to do after the orig­i­nal entry is add new med­ica­tions or remove the ones you’re no longer tak­ing.

With today’s econ­o­my, I hear from many peo­ple who aren’t tak­ing all the med­ica­tions they’re sup­posed to be because they can’t afford them. I can’t stress this enough: talk to your doc­tor! She may know about ways for you to get the drugs you need. She may have access to sam­ples. She may be able to switch you to a cheap­er alter­na­tive. She’ll prob­a­bly be will­ing to help you get help from a patient assis­tance pro­gram if you find one at NeedyMeds (it’s always worth check­ing there!). If there’s real­ly no way for you to get the drug, it’s often impor­tant to taper off slow­ly instead of quit­ting it all at once. Either way, your doc­tor must know what’s going on with you. Don’t be embarrassed—everybody is hav­ing finan­cial issues right now.

If you’re on Medicare, every state has an “extra help” plan that helps cov­er med­ica­tion co-pays for Medicare par­tic­i­pants who meet cer­tain income guide­lines. Those pro­grams aren’t well-adver­tised, so you could qual­i­fy right now and not know it! Call Medicare to find out.

Fight Brain Fog!

Or, at the very least, give your­self more resources to fight it!

Cog­ni­tive abil­i­ties are like mus­cles, in that they have to be devel­oped and exer­cised reg­u­lar­ly, even stretched to keep them flex­i­ble. We can’t nec­es­sar­i­ly avoid the cog­ni­tive deficits that come with some of our ill­ness­es, or as a side effect of our med­ica­tions. What we can do is improve our fac­ul­ties, giv­ing us a bet­ter lev­el of over­all func­tion­ing despite those deficits.


Ways to Improve Your Men­tal Fit­ness
is an excel­lent arti­cle on the sub­ject. I rec­om­mend read­ing it and not­ing some new things to try.

Per­son­al­ly, I find that doing things like a Sudoku or cross­word puz­zle or a cou­ple of rounds of soli­taire Mahjongg each day help me “wake up” my brain and think bet­ter. I’ve long wished I had access to the Nin­ten­do brain train­ing game (Brain Age? some­thing like that), as it sounds like just the thing.

I real­ly wor­ried about tak­ing col­lege cours­es, because I know that if I had to take an IQ test these days, my score would be marked­ly low­er than it was pre-FMS. Hap­pi­ly, I found that tak­ing the cours­es helped me to regain some men­tal agili­ty. I still have mem­o­ry prob­lems, and all bets are off dur­ing a bad flare—but I def­i­nite­ly feel that I’m cop­ing bet­ter on a day to day basis.

Now that I’m not in school for­mal­ly, I’ve been learn­ing to pro­gram. It’s anoth­er kind of think­ing, and one I’ve thought about acquir­ing for years. It has­n’t been easy, but I’m doing it, and it cer­tain­ly is stretch­ing my men­tal mus­cles.

Mak­ing music is anoth­er thing that works for me. I’ve been re-learn­ing to play the ukulele, some­thing I orig­i­nal­ly learned in the sec­ond grade. I used to know how to play piano, flute, and oth­er instru­ments

I’ve always been a singer, pri­mar­i­ly, though

, and I’m sur­prised at how much I’ve for­got­ten about read­ing music. I “know” the notes, but I’m so slow that I have to stop and think, “Now, wait, that’s two lines below the bass clef, so…” when it used to be as easy as read­ing any Eng­lish text. The more I work with it, though, the more I find the exer­cise of think­ing in anoth­er lan­guage to be use­ful as an exer­cise.

What are you doing to stay sharp? Have you tried any of the activ­i­ties rec­om­mend­ed in the arti­cle?

Hope for Pain Relief

I’ve known of mind­ful­ness prac­tices for sev­er­al years, and read Full Cat­a­stro­phe Liv­ing: Using the Wis­dom of Your Body and Mind to Face Stress, Pain, and Ill­ness by Jon Kabat-Zinn sev­er­al years ago. It is one of the books I’ve rec­om­mend­ed on this blog in the past.

I have only recent­ly, though, tru­ly com­mit­ted myself to using the prac­tices. I have to say that I was shocked to find that when I give myself over to the spir­it of some guid­ed med­i­ta­tions, the pain is gone. I am still on my med­ica­tions, but I’m going down on dosages and using no break­through pain med­ica­tion these days.

Kabat-Zinn has pub­lished many oth­er prod­ucts, includ­ing a CD of med­i­ta­tions enti­tled Mind­ful­ness Med­i­ta­tion for Pain Relief: Guid­ed Prac­tices for Reclaim­ing Your Body and Your Life. I’m so impressed with the qual­i­ty of his work on The Mind­ful Way through Depres­sion: Free­ing Your­self from Chron­ic Unhap­pi­ness and the oth­er books I’ve men­tioned that I have no hes­i­ta­tion in rec­om­mend­ing that record­ing. I’d love to hear from oth­ers who are using mind­ful­ness prac­tices in their recov­ery, too!

Long term opiate use safe; One woman’s experience with Savella

There are two great arti­cles from Karen Lee Richards in Health­Cen­tral’s Chron­ic Pain Con­nec­tion newslet­ter today.

The first, Long-Term Opi­oid Ther­a­py – What Are the Effects?, brings us the results of Dr. For­est Ten­nan­t’s ground-break­ing study. He eval­u­at­ed 24 chron­ic pain patients from 30 to 79 years old who had been using opi­oids for 10 to 35 years, and “con­clud­ed that the sig­nif­i­cant improve­ments in qual­i­ty of life and phys­i­cal func­tion­ing from opi­oid ther­a­py are so pos­i­tive they out­weigh any neg­a­tive com­pli­ca­tions, which can be eas­i­ly man­aged.”

Almost all of the patients (22 of 24) said their pain had per­ma­nent­ly decreased over time. And the vast major­i­ty (20 of 24) felt their opi­oids still pro­vid­ed the same relief as when they start­ed treat­ment. All of the patients report­ed one or more func­tions or activ­i­ties they can do now that they could­n’t do pri­or to begin­ning opi­oid ther­a­py (i.e., get out of bed every­day, take walks, shop or vis­it friends).

The arti­cle details the patients’ diag­noses and gives fur­ther infor­ma­tion, and I encour­age you to read the rest of it. While the study was small and obvi­ous­ly needs to be repeat­ed with a larg­er group, this is mar­velous news, and I for one am very grate­ful for Dr. Ten­nan­t’s work and the par­tic­i­pa­tion of his sub­jects.

I have to say that I find Health­Cen­tral’s sites to be gen­er­aly decent, but the Chron­ic Pain Con­nec­tion is out­stand­ing. I encour­age you to vis­it and sub­scribe to the newslet­ter.

Next, in One Patien­t’s Expe­ri­ence with Savel­la for Fibromyal­gia, Richards brings us detailed feed­back from one of her con­tacts, Bren­da, who has been tak­ing the new drug for sev­en weeks. Many of us have heard of Savel­la, but so few have had an oppor­tu­ni­ty to try it or know any­one who have that this arti­cle is very help­ful in mak­ing a deci­sion as to whether or not to ask our physi­cians for it. After read­ing about Bren­da’s advice regard­ing insur­ance expe­ri­ences, deal­ing with side effects, and pos­i­tive results, I for one will be talk­ing to my neu­rol­o­gist about a tri­al pack.

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!

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.

Free Screen Magnifier Software

This isn’t where I usu­al­ly get geeky, but I think this util­i­ty might be use­ful to many read­ers.

I get notices from the Give­away of the Day and Game Give­away Of the Day sites each day as to what they have avail­able that day. They make arrange­ments with var­i­ous soft­ware pub­lish­ers to dis­trib­ute com­mer­cial soft­ware absolute­ly free in return for adver­tis­ing. The catch is that the soft­ware must be down­loaded and installed with­in the 24-hour peri­od of the give­away.

I’ve been watch­ing the site for a year or so, I think, and have down­loaded and tried quite a few pieces of soft­ware. I’ve nev­er found any mal­ware in any of them, although I believe I’ve read men­tion of peo­ple get­ting unwant­ed soft­ware installed in a bun­dle because they did­n’t pay enough atten­tion to what they were agree­ing to dur­ing an install.

Get­ting back to my point, today’s give­away is a nifty util­i­ty that will mag­ni­fy a por­tion of your com­put­er’s screen, enabling you to bet­ter make out tiny print or small details. I did­n’t have one of these installed on my machine until about nine months ago, and I would­n’t want to live with­out it now. There is a free util­i­ty built in to Win­dows, but it isn’t quite as robust as some of the oth­er prod­ucts on the mar­ket. The descrip­tion for this one says:

Mag­ic Lens Max is a real-time, intu­itive and advanced screen mag­ni­fi­er and desk­top view­er to zoom, rotate, enhance, view and cap­ture any area of the screen dis­play. With built-in high­ly opti­mized resam­pling and enhanc­ing fil­ters, Mag­ic Lens Max quick­ly gen­er­ates high-qual­i­ty lens view with clar­i­ty in var­i­ous sit­u­a­tions. It also lets you view­ing in dif­fer­ent col­or mode or through sep­a­rat­ed col­or chan­nels.

As I type this, there’s anoth­er 22 hours and 55 min­utes left to down­load and install Mag­ic Lens Max. Why not give it a whirl?

(Yes, it’s a Win­dows app. Aren’t we the only ones who need such crutch­es?)

Oh — while I don’t find today’s free game offer­ing ter­ri­bly inter­est­ing, I have found some of the games to be very use­ful dis­trac­tions on days that involve too much pain to do any­thing and I can’t focus well enough to read. Pop­ping bub­bles or what­ev­er is a per­fect­ly mind­less pur­suit, and very con­ducive to zon­ing out and get my head away from the pain for a bit. I don’t do “twitch” games, or any­thing that requires a lot of dex­ter­i­ty or is com­plete­ly tied to speed. If I was that dex­trous and/or fast, I’d be doing some­thing more use­ful than play­ing com­put­er games.

The Value of Education for Chronic Illness Patients

Paula Kamen, author of All In My Head, talks about the val­ue of edu­ca­tion in cop­ing with chron­ic ill­ness in an excel­lent edi­to­r­i­al in the New York Times.
Leav­ing the Rab­bit Hole. This pas­sage, in par­tic­u­lar, spoke to me:

The worst thing, to me, about hav­ing a non-stop mul­ti-year headache isn’t nec­es­sar­i­ly the pain. Or the way it tends to dis­rupt inti­mate rela­tion­ships, emp­ty all finan­cial reserves, and sab­o­tage the best-laid career plans. It’s not even the end­less bar­rage of (albeit well-mean­ing) sug­ges­tions for “cures” from every­one you meet, most of which you’ve already tried any­way (except for the colon cleans­ing and the Jews for Jesus con­ver­sion).

No, it’s the emo­tion­al suf­fer­ing – from all the guilt and the shame, of patients like me think­ing it’s our entire fault, and maybe all in our heads.

She also men­tions a good site for any­one who has prob­lems with migraines, Rob­bins Headache Clin­ic.

Episode 4

Episode 4

The first episode in the new, short­er for­mat, record­ed on my very own micro­phone. Thank you for your patience in wait­ing for it!

Most of today’s show is about audio enter­tain­ment and infor­ma­tion, which is great when the fatigue is so bad that lis­ten­ing is one of the few things we can do.

Links:

Ques­tions for you!

  1. Do you pre­fer short­er or longer pod­casts?
  2. What top­ics do you want to hear about?
  3. Do you like hav­ing music in the show?
  4. Do you want me to post tran­scripts of the shows?

Thank you! And remem­ber, I always love hear­ing from you. Com­ment here,
e‑mail me, or call me at 206–350-0021.

‘Til next time, be good to your­self!

Fibrant Liv­ing is pro­duced by Sam Chupp and is a mem­ber of the Fire­heart Foundry fam­i­ly of pod­casts. Music for the pod­cast is by Kimo Watan­abe, and comes from the Pod­safe Music Net­work.