I’m a Mémé!

My grand­ba­by has arrived! So we’re short on sleep, but long on love and joy!

Mov­ing up here, the new baby and asso­ci­at­ed sleep loss, change in gen­er­al — they all lead to increased pain. I don’t take any nar­cot­ic pain med­ica­tions any more because the opi­ates just didn’t pro­vide enough relief to be worth the has­sle of the side effects. I’m still tak­ing Lyri­ca and Cym­bal­ta and they cer­tain­ly help. But for the most part, I have to rely on reduc­ing aggra­vat­ing fac­tors in hopes of avoid­ing flares. That isn’t easy, and it was impos­si­ble with the move and now the new baby. But I do have cop­ing strate­gies that make every­thing bet­ter! What does that look like?

I love my job, but it’s fair­ly stress­ful, which leads to increased pain and oth­er prob­lems. I had to take some time off work. I know that I’m priv­i­leged to be able to do that, even if it is a sac­ri­fice.

My bed­room is set up as my sanc­tu­ary. I have a real­ly great mat­tress, which is impor­tant, with lots of good pil­lows. I’m away from any noise, and I have black­out cur­tains over the win­dows. I have a fan set up to give me just the right amount of air­flow, but I can switch it off from my bed if I need to do so. I also have a good, qui­et air clean­er in the room.

I’ve been care­ful to keep up my vit­a­mins and med­ica­tions. I find that set­ting them up once a week in a good med­i­cine box helps a great deal with keep­ing every­thing straight.

Stay­ing hydrat­ed is also impor­tant. My Apple water bot­tle is always with me! If you don’t like the taste of water, con­sid­er try­ing some of the drops that give a lit­tle bit of fla­vor with­out adding any calo­ries.

I’m not at the com­put­er as much as I am when I’m work­ing, but I use a few util­i­ties to make the expe­ri­ence health­i­er when I am. The first is f.lux, which changes the light from your com­put­er mon­i­tor to match the sun (or to be warm at night, instead of bright like the sun). It makes your com­put­er mon­i­tor look bet­ter and makes it health­i­er for you to use it. It’ll also remind you of when you should get off the com­put­er and go to bed, if you set that part up. The sec­ond is Break­time, which blacks out my Mac’s screen at pre­de­ter­mined inter­vals, forc­ing me to take a break. It’s avail­able for iOS (iPhones, iPods and iPads) too! Time Out is anoth­er alter­na­tive for Macs. If you’re a PC user, try WorkRave (Windows/Linux).

Yoga helps keep me mov­ing. I’m a fan of Curvy Yoga, and have three of Anna Guest-Jelley’s DVDs that I enjoy using. Any­one can do her exer­cis­es!

Final­ly, med­i­ta­tion has become an impor­tant part of my over­all health plan. I like guid­ed med­i­ta­tions, and have found some good apps for iOS that give me a vari­ety to choose from. I’m sure that there are sim­i­lar apps avail­able in the Play Store for Android users. If you’re new to med­i­ta­tion, I’ve heard many good things about Head­space, which is avail­able for both plat­forms. (I real­ly love their Get Some/Give Some pol­i­cy, too.)

How are you cop­ing with your fibrant life late­ly?

 

September 26, 2016 · Cyn Armistead · No Comments
Posted in: Coping Strategies, Ehlers-Danlose Syndrom, Fibromyalgia, Pain, Sleep

Big Update

Well, I owe you all an apol­o­gy. This blog has been aban­doned for four years, and a lot has hap­pened in that time.

Katie is mar­ried, about to fin­ish col­lege, and expect­ing her first child!

I went back to work in 2013! I work from home, but I work full time doing tech­ni­cal sup­port for Apple, Inc. as a Senior Tech­ni­cal Advi­sor. I hope to get back to doing QA, tech­ni­cal writ­ing or busi­ness analy­sis (see my résumé if you’re inter­est­ed!) but this is a great start. I’ve worked for three years now, so I’ve proven to myself that I can work reli­ably.

I’ve been diag­nosed with Ehlers-Dan­los Syn­drome (hyper­mo­bil­i­ty type), which explains a great deal, like the fibromyal­gia symp­toms. EDS is a genet­ic dis­or­der that affects the con­nec­tive tis­sues and, in our case, leads to loose, fre­quent­ly dis­lo­cat­ed joints and chron­ic pain. (I had asked a pedi­atric rheuma­tol­o­gist about EDS in Katie many years ago but he blew us off.) EDS is a genet­ic dis­or­der and there’s evi­dence of it in two gen­er­a­tions of our fam­i­ly, with aneco­datal data of it in a third. The fourth gen­er­a­tion hasn’t been test­ed yet but I’m hop­ing she will be.

The symp­toms are still the same, as is the man­age­ment. I’m on the same med­ica­tions for management—Lyrica, with occa­sion­al opi­ates and mus­cle relax­ants for break­through pain. I stopped tak­ing nar­cotics on a reg­u­lar basis a few years back so that I could return to work. Con­trol­ling stress is very impor­tant, and build­ing up the mus­cles around joints in order to avoid dis­lo­ca­tions is, as well. There’s a lot of doc­u­ment­ed trou­ble with dysautom­nia, par­tic­u­lar­ly Pos­tur­al Ortho­sta­t­ic Tachy­car­dia Syn­drome (POTS), which I seem to have but haven’t tak­en the nasty tilt table test to have con­firmed yet.

But I’m able to work, which is the impor­tant thing. I’m in a sta­ble, sup­port­ive rela­tion­ship with my part­ner Rick, who has no online pres­ence to speak of. We live in metro Atlanta with our dog Har­po and cats Djan­go and Tul­ly and a vary­ing num­ber of kit­tens fos­tered from Life­line Ani­mal Project.

So that’s me. What about you?

April 12, 2016 · Cyn Armistead · One Comment
Posted in: Ehlers-Danlose Syndrom, employment, Personal

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 Armistead · 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 Armistead · 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 Armistead · One Comment
Tags: , , , , , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia