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!

Pho­to by Lau­ry­nas Mereckas on Unsplash

I know if I don’t set up my big week­ly med­ica­tion box once a week, I’m just lost. I found it online and it is divid­ed into nice, large com­part­ments with four sec­tions for each day of the week. (The indi­vid­ual day sec­tions can be removed to take with you dur­ing the day.) I use the box and an app on my phone to remem­ber to take my meds, and I’m ful­ly com­pli­ant. Before I set up that sys­tem, I could­n’t man­age to remem­ber to take 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 med­i­cine bot­tles 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 a 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. I keep a list on my phone (thank you Apple Health!) but I also keep a print­ed list in my purse so that I can sim­ply hand it off to med­ical per­son­nel. (See forms here to help you get started.)

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 and cul­ti­vate a rela­tion­ship with your pharmacist!

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 Drugs.com 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.

Cyn is Katie's mom, Esther's Mémé, and a Support Engineer. She lives in the Atlanta area with her life partner, Rick, and their critters. She knits, does counted-thread needlework, reads, makes music, plays TTRPGs, and spends too much time online.
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