I had no idea how complex medication management was until I had a chronic and rare disease. In this episode, I talk about medication management: keeping track of doses, dealing with pharmacies, ensuring you have the right supplies, and the craziness of the side effects lists.

Managing Medications – It's Like a Second Job, Eps. 9 – The Fine, But Not Fine Podcast

I had no idea how complex medication management was until I had a chronic and rare disease. In this episode, I talk about medication management: keeping track of doses, dealing with pharmacies, ensuring you have the right supplies, and the craziness of the side effects lists.

Transcript

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Medication Management: More Than Just Taking Pills

Hey y’all and welcome back. Today, I’m going to be talking all about prescription medications, and not just the take one and move on kind, but the full on medication management experience, keeping track of doses, dealing with pharmacies, making sure you have the right supplies, the craziness of side effect lists, and for some learning to inject your own meds, kind of like we’re running a tiny at home clinic.
Because when you have a chronic condition, your prescription isn’t simply something you take, it’s actually something you manage. And there are times when it can feel like having a second job. So if you’ve ever had to time your medication around your morning coffee or carried a mini medical fridge through TSA, then you know exactly what I mean.

The Complexities of Medicaiton Schedules

To be honest, before I had to have a prescription routine, I thought taking medication was simple. You take the pill, you move on. But that’s just not reality. Medications come with a lot of rules, many competing.
So, here’s a sample of some of the guidelines that come with some medications I’ve taken or currently take: one I have to take on an empty stomach one hour before food or drink other than water, another has to be taken with food and yet another no grapefruit, because apparently, grapefruit and medicine have irreconcilable differences.

The Disrupted Morning Routine

The worst one, though, it’s the one that upsets my every day, and this is because one medication I took interfered with how my thyroid worked, right? So, I had to start taking thyroid medication, and this little, teeny, tiny, and I mean, tiny pill has an outsized impact on my day, and that’s because I have to take it an hour before any food or drink and take it in the morning.

Do you know how long an hour can feel like when you’re waiting for your morning coffee? This one little thing has up ended every day for me, and I wonder, why did scientists stop here and not figure out another way. Why did they go? Yeah, everyone can just get up in the morning, take a pill and wait an hour to do anything. Because, you know, my morning routine now is, wake up immediately, take a thyroid pill, wait 60 long minutes, contemplate life, or contemplate why scientists stopped at this point, and then finally, drink my coffee. And this is without the relaxing start to the day.

I prefer…I’m a get up, have a cup of coffee, wake up into the world and build my attitude for the day. Now I’ve adapted, but seriously, this is some kind of weird injustice.

The Challenge of Obtaining Medications

And if you think actually taking medications is a challenge, sometimes just getting them can be an entirely different one, you would think picking up a prescription would be as easy as grabbing a carton of milk from the store, but no it too is a logistical operation that can require careful planning and tracking.

For starters, not all medications can come from the same pharmacy. Some are available at a regular pharmacy like CVS, Walgreens, or your locally owned operation that you use, some have to come from a specialty pharmacy, and this usually means extra steps, extra phone calls, and sometimes a little bit of anxiety, the extra phone calls and the lack of appointments to speak with people.

Navigating Specialty Pharmacies

Here one of My real challenges in working with the specialty pharmacy, some medications can be picked up from the pharmacy whenever it works best for you, and others can only be delivered. Some cannot be delivered, meaning you have to pick them up within a specific time frame.

And then there are the medications that require proof of usage before you can get them refilled. This one just confounds me. Nothing about this says, let me help you take your medication. This is where I have to report to the pharmacy exactly how many pills or doses I have left before they will approve a refill.

I am literally giving an inventory update on my own medication, which they could figure out on their own, doing their own math. It’s like they assume I’m stealing this medication instead of, you know, using it to treat a condition that negatively impacts my life.

Medication Side Effects and Interactions

And if you take any kind of medication today, you understand how wild the side effects listings can be. You know, sometimes it starts off fairly reasonable, common, mild nausea, headache and dizziness, and then it begins to escalate, right?

And we get into less common mood swings, vivid dreams, skin sensitivity, and before you know it, we’re at coma, and blindness.
How in the heck did we go from might feel a little off to could be unconscious indefinitely in the same breath? And these things, these listings, they can vary between countries. I most often look at listings in the US and in the UK. And one big difference I’ve noticed in the US, it’s more common, at least from my perspective, to show an impact of alcohol consumption on side effects and drug interactions than in the UK. You know, the US says, Do not consume alcohol. And the UK, it says something like limit to no more than two alcoholic drinks per day. And there is actually some research on these differences.

For instance, in the US and Canada, the information provided on drug labels by the exact same manufacturers, mind you, are much longer than in the UK, but there are more contraindications on the UK labels. These are the same medications, folks. It simply adds to the confusion.

Tips for Keeping Medications Organized

Now, all these side effects and interactions impact how and when you can take your medications. In my life, as it relates to prescriptions, was super simple before I had to take an oral chemo. You know, I had a prescription, I took the pill, done simple. But when I first had that oral chemo, I mean, that just changed everything, as I mentioned earlier. It interfered with my thyroid and also raised my cholesterol, and I couldn’t take my cholesterol medication within four hours of the thyroid medication.

So, now I had to have am and pm medications because I didn’t want to be hauling all this stuff back and forth to work. And I also found it really hard to remember if I took the medication, absolutely crazy stuff. I never thought that would be the case, so I got some pill organizers, and holy cow, have I had pill organizers. Most of them are plastic. They break easily. The lids don’t stay closed, and the lids snap off, and they’re designed with these colors, like I’m a kid in preschool or something like that. They really don’t look very good. Their functionality is kind of questionable. You know, they’re they’re not the best thing.

I did eventually find some that are aluminum and fairly customizable that I really like. But I have to tell you, I absolutely hate that I have to have these organizers in order to make sure I’m taking my medications at the right time and without mixing them with medications I shouldn’t take them with. I have multiple pill containers. I have ones for travel. I have the one that has the seven days on it. That’s my evening. I have one for the thyroid medicine. I have one for another medicine. I can take in the morning, but it has to be at least an hour after the thyroid. It’s just kind of crazy.

The Nuances of Injectable Medications

And that kind of craziness kind of continues when you move into injectables, because some of us in some prescriptions just aren’t available in pills. They actually come in vials or pre filled syringe pens or auto injectors, and that adds a whole new level of supply and storage concerns.

So if your medication doesn’t come in a pre filled pen, but comes in one of those small vials, you need to know your needles. It’s really important to get this right, and you need to make sure your doctor’s office connects the needles to the prescription of your vials, especially if you’re using a specialty pharmacy, because they don’t ship needles, just because you’re getting medication in vials.

Now needle sizes, or gage that refers to the thickness of the needle, the higher the number, the smaller the hole the medicine passes through. So for example, a 25 gage needle is thinner and has a smaller medication hole than an 18 gage needle, and there’s also length.
A sub cutaneous injection needle is relatively short, and this is because it delivers medication just below your skin. And an intramuscular injection needle is longer because it delivers the medication into your muscle, which is beneath, you know, our skin and our fat. And then there’s the next part.

There are the syringes. It’s a syringe and needle, not just a needle or not just a syringe. And the syringes are usually labeled in milliliters, so M and L, or cubic centimeter CC, and as I found out, some of these syringes have much larger print on them than others. So whichever you get, you need to make sure you clearly understand how to read your syringe properly.

Now all of this is why your medical professional needs to determine the needle and syringe size, because it depends on the recipient, are you an adult or a child, the thickness of the medication, the viscosity, right, how much you’re injecting, and where you’re injecting, it, those all play into which needle and syringe is best.

And then it goes beyond just the needle and syringe, because now you have to have the right I’m going to call them accessories. I don’t know what else to call them, because when using an injectable, you don’t just need the medication. You need the entire setup.

You need alcohol swabs for cleaning the top of the vial and the injection site. You need a sharps container. You’ve got to throw those needles away, right? And honestly, I don’t…this is another pet peeve, I guess. Why are all sharps containers ugly? I mean, can someone design something that’s better looking?

And then there are band-aids. I’ve never needed these after an injection, but some people migh,t so having it on hand could be helpful.

Traveling with Medications Requiring Refrigeration

There’s also travel to consider some medications like my injectable interferon, require refrigeration. And at home, this really isn’t a big deal. I keep it in a designated container in my refrigerator where I know it falls within the temperatures I’m supposed to store it in. But traveling that takes a little bit more planning.

They do make insulated medical coolers, and these have long-lasting ice packs that don’t freeze your medication and for long trips, think things like international air travel and hotels without refrigerators, they make these kind of refrigeration tubes that can plug into a USB outlet to keep cold. So it’s something else to occupy limited space in your carry on bag.

Now don’t get me wrong, I appreciate that I have access to medications to treat my disease, but I think it’s important for people to understand that managing prescriptions can sometimes feel like a chain that’s holding you down.

Travel Planning when You’re Managing Medication Complexities

And I know people sometimes look at me like I have four heads when they asked me to do something impromptu, because it can take me a bit to respond, and that’s because I’m rapidly calculating in my head, what do I need to do about medications? So imagine someone proposes, hey, Kelly, let’s let’s go away for a short trip to DC.

My brain moves on to trying to figure out if the hotel has a fridge in the room. Will we travel by air, train or car? Because what I need to do is going to be different. When do my side effects typically kick in? How long will my side effects last, and will they impact key points or times in our visit?

These are the things I have to think about, and sometimes that just really makes me frustrated, but given all of that, finding a way to make it functional and organized is critical. Developing a system and building a routine makes it easier to quickly make those calculations and get out and live life, which is a whole point, right? Make it functional, make it organized. Live well.

How Do You Keep Your Medications Organized?

So how do you manage your medications? Do you have any tips for others or tips for me? If so, visit fine, but not fine.com. Leave a comment and let me know. I’d love to hear them until next time, get organized, take your meds and take care of yourself.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.