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?

 

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?