Medication and Travel Solutions, Part IV

The path to keeping track of my day-to-day medications was long, bumpy, and unexpectedly emotional for me. This was a tangible, inescapable sign of what my body was becoming, what I was becoming: sick. Chronically sick, to the point where pulling out a few Advil or digging through a bathroom cabinet for some cough syrup would no longer cut it. How I keep track of my day-to-day medications is a a system that has evolved considerably, and I expect it will continue to change as my illnesses do. There is no one way to keep track of daily medications, and the right way is the way that works best for you. This is just what works (mostly) for me right now … and it took me a long time to even try to find a “right way,” or indeed any way!

I was very resistant to any medication organization at first. I was only taking a few different medications a day, and I thought I could simply keep the pill bottles on my kitchen counter and remember to take them. I had not counted on the brain-numbing effects of medications, illness, pain, and dissertation research. I would look into the mirror at night and tell myself my own name, just to make sure I remembered that! This absent-mindedness led to inevitable problems with either forgetting to take medications or accidentally taking them twice! After I contacted Poison Control once about a slip up, I decided it was no longer safe and sensible to continue on like this. And I wanted to live, right? Or at least not have the people at Poison Control think I was an absolute idiot. I could put aside my pride about being “well” in favor of my pride about my intelligence (or a perception of it). I knew it was silly, but it was a reason. And all I needed was a reason.

My first attempt was to simply grab a sheet of paper and write down what I had taken and the time. Later, these loose sheets of paper became a notebook. This was nice, since it let me personalize my medication account and record how I was feeling. I could use colored pens, doodle, and track how medications were working for me. Unfortunately, hauling out a journal and taking a few minutes to write up notes during a lunch meeting was obvious and awkward.

I switched to using my phone to keep track when I used up my notebook. I was staying with friends following a bad flare, and asking for a new notebook was beyond me Taking a memo on a phone was easy, and fiddling with a phone for a second was such a commonplace thing to do for my age group that it wasn’t as obtrusive. I still had to remember when to take medications, however, so I started to put reminders on my phone as well. Soon alarms were flashing and jangling every couple of hours. That wasn’t ideal during classes or meetings, but with some more tweaking I could make the reminders relatively workable.

Now that I was tracking doses, the next challenge was the sheer number of pill bottles I was getting. It became too much hassle to carry around 6 pill bottles individually… which rapidly became 8, then 11…. By this point, I recognized the shape of most of my meds, so each night I’d fill up an empty pill bottle with all the medications for the next day. This worked for a little while, but soon there was so many crammed in the bottle that I was having to dump it out each time I needed to take a pill. So much for one small, unremarkable pill bottle.

It was time. I walked into the nearest big box store, forced myself to go over to the pharmacy section, and looked over my options. They weren’t that great. There were big long rectangles and huge squares that were definitely not going to fit in my purse. There was a square zipper case that was tiny, and another in a ferocious leopard print (not me). There was a few round options as well, and I finally picked out a small blue plastic pill holder. It was rather octagonal, with square edges that fit neatly into the palm of my hand, and each little individual door was marked with the letter of a different day of the week.

HA.

Seriously, good one. No way could I fit a week’s worth of medication in that case. I took it home and stuck on new stickers, relabeling it for a day’s worth of meds instead of a week’s worth. For awhile, it was great. It was the perfect size, the color was playful and easy to find in my case, and it was convenient. Of course, I still only had the one case, which meant refilling it every day. That was partially because I was broke … and even more because I simply refused to admit to myself that managing medications was going to be such a big part of my life that it would be worth a bigger investment. As long as it was only one case, this wasn’t chronic. It could change. Even as I struggled to get family and friends to accept that I wasn’t probably going to wake up “all better,” I still had this one last physical holdout.

Later, I got more ill. I finally began to collect diagnoses — finally, I say, like it was such a long time, although it was actually quite short by the standards of most rare and rarely-diagnosed illnesses. (Although I’m still in the process of being diagnosed for some holdout irregularities yet). The new diagnoses also meant collecting new (and more) medications, although they were far more effective. With these new diagnoses, and also more information, I realized that this was not a sprint or even a 10k. It was definitely a marathon, and if I wanted to survive the running I needed to pull it together. My little blue case was no longer able to hold all the medications I was stuffing in it, and filling it every single night was drag. I needed to make an investment in my infrastructure. I was ready.

I researched a few cases. At least I learned from having one case what I wanted: big enough to hold the pills for a dinner dose (usually the biggest of the day), a lid that didn’t pop open, individual holders that were all easily accessible (no prying the center tile up with a screwdriver every Wednesday at lunch, no thank you!). I didn’t want it to make noise or flash, since I would be using these in a variety of social settings. I won’t lie: it took me awhile, and I might have taken several “sanity breaks” to breathe and eat and play a game. I finally settled on two varieties: a black zip case that was unobtrusive, for use at work and school, and a clear round disk because it was a bit cheaper and I could see what was in it. I was hoping they’d both fit in my hand and pockets as easily as the blue case, but they didn’t. They were also depressingly plain. I started to jazz up the stick-on labels for cases every so often. Anything to reclaim and personalize the coldly clinical aspects of life, right? Or just to make it not quite so horrifically boring. The good thing has been that the cases have been solid and have held a day’s worth of medications for the last year. I gradually accrued a week’s supply of cases and a backup, and each week I turn on an audiobook or a tv show, sit down with a box of medications on one side and the empty cases in front of me, and fill up each cell. I have an excel spreadsheet printed out and I follow it carefully, double-checking my work periodically. I still can make mistakes, but far less often than when I refilled the case every night.

Now there are apps for all of this. There are even apps that allow you to scan medication bottles or tags when you take medications, and apps that sync with a pill container to automatically record when you take medications. They’ll even alert someone else that you’ve taken your medication. I haven’t tested any of these more expensive, tech-savvy alternatives, however. I can barely get a mechanical pencil to work! But they are out there. (I personally would play around with a few cheap alternatives first, just to make sure you know the size of container you might need.)

I’m slowly outgrowing these cases as well, and I’m back to doubling up on the little dividers, fishing out 1 pill from the 1 pm slot and then taking the rest later, or the like. This makes it more noticeable, and many people are still bothered by someone taking pills in public (or even taking pills, period). I might have to carry two cases soon, one for morning and the other for evening, or move to one of the larger cubes meant for a month for a more normal individual. I’m not happy about that … but I’m not refusing to think about options, either. Improvement.

Because, if I’m honest, the real difficulty was not sitting down and sorting through Amazon reviews or checking out the 5 options available in the local drugstore. It was the mental battle to get to that point, and then getting through it. It was the odd blend of denial and acceptance and doing logistics with a deluxe poofy cotton-ball brain, all wrapped up in boring, cheap, smelly plastic. I didn’t want to ask my doctors for help figuring out how to manage medications (and I didn’t think they would understand well either). I didn’t know anyone else who was sick and having to deal with chronic illness on their own to ask. I didn’t find online support groups until later, so I just did what I do: research, grit my teeth, and cry with the fan on high and the shower running to cover the sound.

For some people this might not be an issue at all, just like some people aren’t afraid of clowns or moths or phones ringing at 2:37 in the morning. Everyone has different breaking points. One of mine was just cheap plastic bins. Just know, if you’re someone who has unexpectedly found yourself wailing at buying a $5 medicine case, you’re not alone.

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