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.

July 16, 2012 · cyn · One Comment
Tags: , , , , ,  · Posted in: Managing Your Healthcare, Medications, Resources

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?

July 15, 2012 · cyn · One Comment
Tags: , , , , , , , , , , , , ,  · Posted in: Resources

Canaries Are Us

Have you ever heard of how min­ers used to use canaries to test the air in mines? The birds would get ill, or even die, from bad air much more quickly than humans would real­ize that the air was bad, allow­ing the humans to get out of the mine.

Those of us who have seri­ous cases of FMS and CFS/ME are human canaries. We often react far more sen­si­tively to EVERYTHING — med­ica­tions, weather changes, tem­per­a­ture changes, drafts, out­gassing from new uphol­stery or car­pets, VOCs in fresh paint, clean­ing chem­i­cals, pes­ti­cides, air pol­lu­tion, preser­v­a­tives — you name it. Any­thing which puts any kind of stress on your body or your psy­che can pro­voke a flare. Most of us react by try­ing to avoid stres­sors as a main strategy.

We can’t avoid all stres­sors. We can’t man­date that every­one at the gro­cery store refrain from using fra­granced prod­ucts. I’m find­ing that we can’t always count on vital parts of our sup­port net­work stay­ing in place, because peo­ple change. We can’t avoid the weather and its effects on us.

And some­times we need some­thing, like radi­a­tion ther­apy or chemother­apy, to treat another con­di­tion, and we know that it will be a major stres­sor. There is no guar­an­tee as to whether or not you’ll have a flare pro­voked by radi­a­tion ther­apy, of course. If your oncol­o­gist says that you need that in order to treat can­cer, it prob­a­bly isn’t wise to refuse it. 1 How­ever, what you should do is make sure that you take really good care of your­self oth­er­wise, and reduce your body’s over­all stress load.

The best way to deal with being a canary is to take good care of your­self. Take care of the basics by doing all of those things you know you should do anyway.

  • Estab­lish a reg­u­lar sleep sched­ule that ensures that you get plenty of qual­ity sleep, and stick to it. You may need reg­u­lar naps as part of your sleep sched­ule. My rheuma­tol­o­gist pre­scribed brief hourly naps for me at one time. Do what you need to do.
  • Eat enough of the right kinds of foods to nour­ish your body and spirit, and make sure that they’re of good qual­ity, as fresh and free of chem­i­cals as pos­si­ble. Many peo­ple find it bet­ter to eat mul­ti­ple small meals through­out the day rather than to have three larger meals sep­a­rated by many hours of nothing.
  • Make sure that you have a safe, quiet retreat that is clean, free of pol­lu­tants, and quiet. If you’re prone to migraines or oth­er­wise sen­si­tive to light, put in black­out cur­tains so that you can con­trol the light in your safe space.
  • Get enough light. Your body needs it to pro­duce vit­a­min D. If you don’t get out in the sun­shine very often, use a light box. There are some very good, inex­pen­sive ones avail­able now.
  • Get in touch with nature if at all pos­si­ble. Even if you only go out­side for five min­utes a day, you’ll feel more grounded and refreshed for that time.
  • Move. Be gen­tle with your­self, but get up and move at least once every hour. Stretch your mus­cles and get your blood mov­ing. It will help.

1 This isn’t the­o­ret­i­cal, but a response to a reader.

July 6, 2012 · cyn · One Comment
Tags: , , , , , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia

Getting Better

I’ve been very busy over the last six months and had some major changes in my life that have been very stress­ful. As I’ve said else­where, my main strat­egy in deal­ing with fibromyal­gia has been to reduce stress in my life as much as possible.

Unfor­tu­nately, the main source of stress in my life over the last year was my rela­tion­ship with my life part­ner. That ended in Jan­u­ary, which led to a brief period of greatly increased stress—moving house, major lifestyle changes, etc. I ended up in the hos­pi­tal for a brief time due to depres­sion, which is one of my biggest health issues.

How­ever, I had begun mak­ing some big changes a few months ear­lier. I had started on Weight Watch­ers, stick­ing to mostly fresh, local food. I had re-committed myself to exer­cis­ing, join­ing the YMCA and get­ting seri­ous about fit­ness. I had also found a good ther­a­pist and begun Dialec­ti­cal Behav­ioral Ther­apy, which com­bines mind­ful­ness tech­niques with cog­ni­tive behav­ioral ther­a­peu­tic basics.

I believe those changes allowed me to avoid a total col­lapse despite the major cri­sis that struck in Jan­u­ary. I’ve also lost weight, although that isn’t the pri­mary goal of the changes. My total pain lev­els have been reduced and I’ve been able to reduce the dosage of one of my med­ica­tions and stop tak­ing two oth­ers. At this point, I’m hop­ing that I can return to work before too long.

I’m not always able to get to the Y when I like, and weight-bearing exer­cise is still painful (I have degen­er­a­tive disc dis­ease and arthri­tis), so I’ve had to be cre­ative in find­ing ways to be active at home. It’s pos­si­ble to do so, though.

As lit­tle as five min­utes of activ­ity at a time through­out the day can make a major dif­fer­ence in pain lev­els, believe me. I’m for­tu­nate enough to have access to a pool in the neigh­bor­hood, but if you don’t, you can stop and stretch for a few min­utes. Or hope about some light yoga? I found some free yoga videos that are acces­si­ble to any­one with a net con­nec­tion on YouTube and var­i­ous web sites. There are even chair exer­cises for those who aren’t able to get up and move around. Any­thing will help.

Remem­ber to stay hydrated, before, dur­ing, and after your move­ment peri­ods. It’s sum­mer in my half of the world, so heat that requires more hydra­tion all by itself.

Let me know how gen­tly and grad­u­ally increas­ing your activ­ity lev­els works for you, please. I’m inter­ested in hear­ing from you!

July 5, 2012 · cyn · 4 Comments
Tags:  · Posted in: Fibromyalgia, Pain

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!

March 23, 2012 · cyn · No Comments
Tags: , , ,  · Posted in: Fibromyalgia, Pain, Resources, treatments