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.

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.

An Update Instead of a Book Review!

I looked back at my recent entries and real­ized that it’s been a real­ly long time since I post­ed much of any­thing sub­stan­tive. I’m com­ing out of a long peri­od of being near­ly zom­biefied thanks to one of my med­ica­tions. I did­n’t real­ize that was hap­pen­ing, as I’d been on that drug for years with­out that prob­lem. Appar­ent­ly, the prob­lem was a com­bi­na­tion of my dosage being increased last fall and inter­ac­tion with oth­er meds. Unfor­tu­nate­ly, I found this out because of an irre­spon­si­ble doc­tor who refused to see me as sched­uled when I was due for refills, and would­n’t give me refills with­out see­ing me. Crash­ing off the max­i­mum dose caused insom­nia and seizures.

Yes, seizures. Some­thing I have nev­er expe­ri­enced before, and I real­ly did­n’t need to add yet anoth­er square to my per­son­al Symp­toms Bin­go Card. I fell right out of the bed dur­ing one bad seizure last week. We have a cap­tain’s bed designed for a water mat­tress, but have a reg­u­lar mat­tress and box springs on top, so the whole thing is much high­er than most beds. I have to use a step­stool to get in and out of bed. So falling out was much more painful than falling out of most beds. Hit­ting my fore­heard on the wheel­chair and whacked my chin but good on the lapdesk did­n’t help. I have no idea what I hit with my right fore­arm, but it still looks like a per­son bit me. My left arm has funky bruis­ing and a cut, both knees are bruised and car­pet burned, and my tor­so is also bruised and sore. Lots of fun! Now my chin is actu­al­ly black, mak­ing me want to wash my face every time I see a mir­ror. I’ve nev­er been able to feel the swelling in a bruise as dis­tinct­ly as this one, either.

I’ve seen a new doc­tor, who switched me to a bet­ter med­ica­tion. It’s help­ing to slow down the seizures, but I’m still hav­ing some. I’m still sleep­ing a lot less than I was, which is good. What isn’t good is that I’m hav­ing trou­ble sleep­ing well, peri­od. Hope­ful­ly that will go away soon.

Social Secu­ri­ty is still mess­ing around with my case and has­n’t paid out a dime yet, or sent me a Medicare card. If you ever have trou­ble with the SSA, don’t even both­er try­ing to find any­one to take respon­si­bil­i­ty for straight­en­ing any­thing out. Just go straight to your Sen­a­tor or Rep­re­sen­ta­tive’s office. I’d been try­ing to get a straight answer from some­body, any­body, in the whole orga­ni­za­tion for about a month with­out luck. Less than 48 hours after con­tact­ing a Sen­a­tor’s office, I got a mes­sage that my file is at the Bal­ti­more pay­ment office, that they have all the infor­ma­tion they need to pay out the claim, and that we should see mon­ey very soon now.

I was real­ly hop­ing to get the Medicare thing start­ed in time to maybe have a pow­ered mobil­i­ty device before Drag­on Con, which would let me go and enjoy the con for the first time in years. The last time I went, we rent­ed a scoot­er, so if the mon­ey comes through before the con I sup­pose we might try that again.

In more fun news, we fin­ished watch­ing Torch­wood: Chil­dren of Earth last night. Talk about depress­ing! Gwen and Rhys were the only ones who came out of that as heroes. And now I read that there’s going to be a fourth sea­son? Who the heck will be in it?

I’ve slowed down on read­ing books, par­tial­ly because I can actu­al­ly do some oth­er things for a change. The house is slow­ly improv­ing! I’m hop­ing we can even enter­tain again before long.

I haven’t been keep­ing up with most peo­ple’s Live­Jour­nals or any­thing else, so if there’s some­thing I should have seen, I’d appre­ci­ate a poke in the com­ments here.

And That’s the Week

I con­sid­er Sun­day the first day of the week, rather than the last.

It was a week full of appoint­ments for the girl, and get­ting paper­work shuf­fled to var­i­ous bureau­cra­cies. Sam and I had love­ly dates Wednes­day and tonight, although both of us were so exhaust­ed Wednes­day that we turned in much ear­li­er than usu­al.

Con­tin­ue read­ing “And That’s the Week”