April 15, 2025 • 14 mins
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.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Kelly Paul (00:01):
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoides since 2015. This is aspace for real talk, real
(00:24):
experiences and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Hey y'all and welcome back.Today, I'm going to be talking
all about prescriptionmedications, and not just the
(00:47):
take one and move on kind, butthe full on medication
management experience, keepingtrack of doses, dealing with
pharmacies, making sure you havethe right supplies, the
craziness of side effect lists,and for some learning to inject
your own meds, kind of likewe're running a tiny at home
(01:08):
clinic.
Because when you have a chroniccondition, your prescription
isn't simply something you take,it's actually something you
manage. And there are times whenit can feel like having a second
job. So if you've ever had totime your medication around your
morning coffee or carried a minimedical fridge through TSA, then
(01:31):
you know exactly what I mean.
To be honest, before I had tohave a prescription routine, I
thought taking medication wassimple. You take the pill, you
move on. But that's just notreality. Medications come with a
lot of rules, many competing.
So, here's a sample of some ofthe guidelines that come with
(01:54):
some medications I've taken orcurrently take: one I have to
take on an empty stomach onehour before food or drink other
than water, another has to betaken with food and yet another
no grapefruit, becauseapparently, grapefruit and
medicine have irreconcilabledifferences.
(02:15):
The worst one, though, it's theone that upsets my every day,
and this is because onemedication I took interfered
with how my thyroid worked,right? So, I had to start taking
thyroid medication, and thislittle, teeny, tiny, and I mean,
tiny pill has an outsized impacton my day, and that's because I
(02:39):
have to take it an hour beforeany food or drink and take it in
Do you know how long an hour canfeel like when you're waiting
the morning.
for your morning coffee? Thisone little thing has up ended
every day for me, and I wonder,why did scientists stop here and
(03:01):
not figure out another way. Whydid they go? Yeah, everyone can
just get up in the morning, takea pill and wait an hour to do
anything. Because, you know, mymorning routine now is, wake up
immediately, take a thyroidpill, wait 60 long minutes,
contemplate life, or contemplatewhy scientists stopped at this
(03:24):
point, and then finally, drinkmy coffee. And this is without
the relaxing start to the day.
I prefer...I'm a Get up, have acup of coffee, wake up into the
world and build my attitude forthe day. Now I've adapted, but
seriously, this is some kind ofweird injustice.
(03:48):
And if you think actually takingmedications is a challenge,
sometimes just getting them canbe an entirely different one,
you would think picking up aprescription would be as easy as
grabbing a carton of milk fromthe store, but no it too is a
logistical operation that canrequire careful planning and
(04:10):
tracking.
For starters, not allmedications can come from the
same pharmacy. Some areavailable at a regular pharmacy
like CVS, Walgreens, or yourlocally owned operation that you
use, some have to come from aspecialty pharmacy, and this
usually means extra steps, extraphone calls, and sometimes a
(04:32):
little bit of anxiety, the extraphone calls and the lack of
appointments to speak withpeople.
Here one of My real challengesin working with the specialty
pharmacy, some medications canbe picked up from the pharmacy
whenever it works best for you,and others can only be
delivered. Some cannot bedelivered, meaning you have to
(04:55):
pick them up within a specifictime frame.
And then there are themedications that require proof
of usage before you can get themrefilled. This one just
confounds me. Nothing about thissays, let me help you take your
medication. This is where I haveto report to the pharmacy
exactly how many pills or dosesI have left before they will
(05:19):
approve a refill.
I am literally giving aninventory update on my own
medication, which they couldfigure out on their own, doing
their own math. It's like theyassume I'm stealing this
medication instead of, you know,using it to treat a condition
that negatively impacts my life.
(05:41):
And if you take any kind ofmedication today, you understand
how wild the side effectslistings can be. You know,
sometimes it starts off fairlyreasonable, common, mild nausea,
headache and dizziness, and thenit begins to escalate, right?
And we get into less common moodswings, vivid dreams, skin
sensitivity, and before you knowit, we're at coma, and
(06:04):
blindness.
How in the heck did we go frommight feel a little off to could
be unconscious indefinitely inthe same breath? And these
things, these listings, they canvary between countries. I most
often look at listings in the USand in the UK. And one big
(06:25):
difference I've noticed in theUS, it's more common, at least
from my perspective, to show animpact of alcohol consumption on
side effects and druginteractions than in the UK. You
know, the US says, Do notconsume alcohol. And the UK, it
says something like limit to nomore than two alcoholic drinks
(06:46):
per day. And there is actuallysome research on these
differences.
For instance, in the US andCanada, the information provided
on drug labels by the exact samemanufacturers, mind you, are
much longer than in the UK, butthere are more contraindications
on the UK labels. These are thesame medications, folks. It
(07:09):
simply adds to the confusion.
Now, all these side effects andinteractions impact how and when
you can take your medications.In my life, as it relates to
prescriptions, was super simplebefore I had to take an oral
chemo. You know, I had aprescription, I took the pill,
done simple. But when I firsthad that oral chemo, I mean,
(07:33):
that just changed everything, asI mentioned earlier. It
interfered with my thyroid andalso raised my cholesterol, and
I couldn't take my cholesterolmedication within four hours of
the thyroid medication.
So, now I had to have am and pmmedications because I didn't
want to be hauling all thisstuff back and forth to work.
(07:54):
And I also found it really hardto remember if I took the
medication, absolutely crazystuff. I never thought that
would be the case, so I got somepill organizers, and holy cow,
have I had pill organizers. Mostof them are plastic. They break
easily. The lids don't stayclosed, and the lids snap off,
(08:16):
and they're designed with thesecolors, like I'm a kid in
preschool or something likethat. They really don't look
very good. Their functionalityis kind of questionable. You
know, they're they're not thebest thing.
I did eventually find some thatare aluminum and fairly
customizable that I really like.But I have to tell you, I
(08:37):
absolutely hate that I have tohave these organizers in order
to make sure I'm taking mymedications at the right time
and without mixing them withmedications I shouldn't take
them with. I have multiple pillcontainers. I have ones for
travel. I have the one that hasthe seven days on it. That's my
evening. I have one for thethyroid medicine. I have one for
(08:58):
another medicine. I can take inthe morning, but it has to be at
least an hour after the thyroid.It's just kind of crazy.
And that kind of craziness kindof continues when you move into
injectables, because some of usin some prescriptions just
aren't available in pills. Theyactually come in vials or pre
filled syringe pens or autoinjectors, and that adds a whole
(09:22):
new level of supply and storageconcerns.
So if your medication doesn'tcome in a pre filled pen, but
comes in one of those smallvials, you need to know your
needles. It's really importantto get this right, and you need
to make sure your doctor'soffice connects the needles to
the prescription of your vials,especially if you're using a
(09:43):
specialty pharmacy, because theydon't ship needles, just because
you're getting medication invials.
Now needle sizes, or gage thatrefers to the thickness of the
needle, the higher the number,the smaller the hole the
medicine passes through. So forexample, a 25 gage needle is
thinner and has a smallermedication hole than an 18 gage
(10:07):
needle, and there's also length.
A sub cutaneous injection needleis relatively short, and this is
because it delivers medicationjust below your skin. And an
intramuscular injection needleis longer because it delivers
the medication into your muscle,which is beneath, you know, our
skin and our fat. And thenthere's the next part.
(10:30):
There are the syringes. It's asyringe and needle, not just a
needle or not just a syringe.And the syringes are usually
labeled in milliliters, so M andL, or cubic centimeter CC, and
as I found out, some of thesesyringes have much larger print
on them than others. Sowhichever you get, you need to
(10:50):
make sure you clearly understandhow to read your syringe
properly.
Now all of this is why yourmedical professional needs to
determine the needle and syringesize, because it depends on the
recipient, are you an adult or achild, the thickness of the
medication, the viscosity,right, how much you're
injecting, and where you'reinjecting, it, those all play
(11:14):
into which needle and syringe isbest.
And then it goes beyond just theneedle and syringe, because now
you have to have the right I'mgoing to call them accessories.
I don't know what else to callthem, because when using an
injectable, you don't just needthe medication. You need the
entire setup.
You need alcohol swabs forcleaning the top of the vial and
(11:35):
the injection site. You need asharps container. You've got to
throw those needles away, right?And honestly, I don't...this is
another pet peeve, I guess. Whyare all sharps containers ugly?
I mean, can someone designsomething that's better looking?
And then there are band aids.I've never needed these after an
injection, but some peoplemigh,t so having it on hand
(11:56):
could be helpful.
There's also travel to considersome medications like my
injectable interferon, requirerefrigeration. And at home, this
really isn't a big deal. I keepit in a designated container in
my refrigerator where I know itfalls within the temperatures
I'm supposed to store it in. Buttraveling that takes a little
bit more planning.
(12:18):
They do make insulated medicalcoolers, and these have
long-lasting ice packs thatdon't freeze your medication and
for long trips, think thingslike international air travel
and hotels withoutrefrigerators, they make these
kind of refrigeration tubes thatcan plug into a USB outlet to
keep cold. So it's somethingelse to occupy limited space in
(12:41):
your carry on bag.
Now don't get me wrong, Iappreciate that I have access to
medications to treat my disease,but I think it's important for
people to understand thatmanaging prescriptions can
sometimes feel like a chainthat's holding you down.
And I know people sometimes lookat me like I have four heads
when they asked me to dosomething impromptu, because it
(13:03):
can take me a bit to respond,and that's because I'm rapidly
calculating in my head, what doI need to do about medications?
So imagine someone proposes,hey, Kelly, let's let's go away
for a short trip to DC. My brainmoves on to trying to figure out
if the hotel has a fridge in theroom. Will we travel by air,
train or car? Because what Ineed to do is going to be
(13:25):
different. When do my sideeffects 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 tothink about, and sometimes that
just really makes me frustrated,but given all of that, finding a
way to make it functional andorganized is critical.
(13:48):
Developing a system and buildinga routine makes it easier to
quickly make those calculationsand get out and live life, which
is a whole point, right? Make itfunctional, make it organized.
Live well.
So how do you manage yourmedications? Do you have any
(14:09):
tips for others or tips for me?If so, visit fine, but not
fine.com. Leave a comment andlet me know. I'd love to hear
them until next time, getorganized, take your meds and
take care of yourself.
Thanks for listening to Fine,But Not Fine. If this episode
(14:31):
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
going.
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoides since 2015. This is aspace for real talk, real
(00:24):
experiences and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Hey y'all and welcome back.Today, I'm going to be talking
all about prescriptionmedications, and not just the
(00:47):
take one and move on kind, butthe full on medication
management experience, keepingtrack of doses, dealing with
pharmacies, making sure you havethe right supplies, the
craziness of side effect lists,and for some learning to inject
your own meds, kind of likewe're running a tiny at home
(01:08):
clinic.
Because when you have a chroniccondition, your prescription
isn't simply something you take,it's actually something you
manage. And there are times whenit can feel like having a second
job. So if you've ever had totime your medication around your
morning coffee or carried a minimedical fridge through TSA, then
(01:31):
you know exactly what I mean.
To be honest, before I had tohave a prescription routine, I
thought taking medication wassimple. You take the pill, you
move on. But that's just notreality. Medications come with a
lot of rules, many competing.
So, here's a sample of some ofthe guidelines that come with
(01:54):
some medications I've taken orcurrently take: one I have to
take on an empty stomach onehour before food or drink other
than water, another has to betaken with food and yet another
no grapefruit, becauseapparently, grapefruit and
medicine have irreconcilabledifferences.
(02:15):
The worst one, though, it's theone that upsets my every day,
and this is because onemedication I took interfered
with how my thyroid worked,right? So, I had to start taking
thyroid medication, and thislittle, teeny, tiny, and I mean,
tiny pill has an outsized impacton my day, and that's because I
(02:39):
have to take it an hour beforeany food or drink and take it in
Do you know how long an hour canfeel like when you're waiting
the morning.
for your morning coffee? Thisone little thing has up ended
every day for me, and I wonder,why did scientists stop here and
(03:01):
not figure out another way. Whydid they go? Yeah, everyone can
just get up in the morning, takea pill and wait an hour to do
anything. Because, you know, mymorning routine now is, wake up
immediately, take a thyroidpill, wait 60 long minutes,
contemplate life, or contemplatewhy scientists stopped at this
(03:24):
point, and then finally, drinkmy coffee. And this is without
the relaxing start to the day.
I prefer...I'm a Get up, have acup of coffee, wake up into the
world and build my attitude forthe day. Now I've adapted, but
seriously, this is some kind ofweird injustice.
(03:48):
And if you think actually takingmedications is a challenge,
sometimes just getting them canbe an entirely different one,
you would think picking up aprescription would be as easy as
grabbing a carton of milk fromthe store, but no it too is a
logistical operation that canrequire careful planning and
(04:10):
tracking.
For starters, not allmedications can come from the
same pharmacy. Some areavailable at a regular pharmacy
like CVS, Walgreens, or yourlocally owned operation that you
use, some have to come from aspecialty pharmacy, and this
usually means extra steps, extraphone calls, and sometimes a
(04:32):
little bit of anxiety, the extraphone calls and the lack of
appointments to speak withpeople.
Here one of My real challengesin working with the specialty
pharmacy, some medications canbe picked up from the pharmacy
whenever it works best for you,and others can only be
delivered. Some cannot bedelivered, meaning you have to
(04:55):
pick them up within a specifictime frame.
And then there are themedications that require proof
of usage before you can get themrefilled. This one just
confounds me. Nothing about thissays, let me help you take your
medication. This is where I haveto report to the pharmacy
exactly how many pills or dosesI have left before they will
(05:19):
approve a refill.
I am literally giving aninventory update on my own
medication, which they couldfigure out on their own, doing
their own math. It's like theyassume I'm stealing this
medication instead of, you know,using it to treat a condition
that negatively impacts my life.
(05:41):
And if you take any kind ofmedication today, you understand
how wild the side effectslistings can be. You know,
sometimes it starts off fairlyreasonable, common, mild nausea,
headache and dizziness, and thenit begins to escalate, right?
And we get into less common moodswings, vivid dreams, skin
sensitivity, and before you knowit, we're at coma, and
(06:04):
blindness.
How in the heck did we go frommight feel a little off to could
be unconscious indefinitely inthe same breath? And these
things, these listings, they canvary between countries. I most
often look at listings in the USand in the UK. And one big
(06:25):
difference I've noticed in theUS, it's more common, at least
from my perspective, to show animpact of alcohol consumption on
side effects and druginteractions than in the UK. You
know, the US says, Do notconsume alcohol. And the UK, it
says something like limit to nomore than two alcoholic drinks
(06:46):
per day. And there is actuallysome research on these
differences.
For instance, in the US andCanada, the information provided
on drug labels by the exact samemanufacturers, mind you, are
much longer than in the UK, butthere are more contraindications
on the UK labels. These are thesame medications, folks. It
(07:09):
simply adds to the confusion.
Now, all these side effects andinteractions impact how and when
you can take your medications.In my life, as it relates to
prescriptions, was super simplebefore I had to take an oral
chemo. You know, I had aprescription, I took the pill,
done simple. But when I firsthad that oral chemo, I mean,
(07:33):
that just changed everything, asI mentioned earlier. It
interfered with my thyroid andalso raised my cholesterol, and
I couldn't take my cholesterolmedication within four hours of
the thyroid medication.
So, now I had to have am and pmmedications because I didn't
want to be hauling all thisstuff back and forth to work.
(07:54):
And I also found it really hardto remember if I took the
medication, absolutely crazystuff. I never thought that
would be the case, so I got somepill organizers, and holy cow,
have I had pill organizers. Mostof them are plastic. They break
easily. The lids don't stayclosed, and the lids snap off,
(08:16):
and they're designed with thesecolors, like I'm a kid in
preschool or something likethat. They really don't look
very good. Their functionalityis kind of questionable. You
know, they're they're not thebest thing.
I did eventually find some thatare aluminum and fairly
customizable that I really like.But I have to tell you, I
(08:37):
absolutely hate that I have tohave these organizers in order
to make sure I'm taking mymedications at the right time
and without mixing them withmedications I shouldn't take
them with. I have multiple pillcontainers. I have ones for
travel. I have the one that hasthe seven days on it. That's my
evening. I have one for thethyroid medicine. I have one for
(08:58):
another medicine. I can take inthe morning, but it has to be at
least an hour after the thyroid.It's just kind of crazy.
And that kind of craziness kindof continues when you move into
injectables, because some of usin some prescriptions just
aren't available in pills. Theyactually come in vials or pre
filled syringe pens or autoinjectors, and that adds a whole
(09:22):
new level of supply and storageconcerns.
So if your medication doesn'tcome in a pre filled pen, but
comes in one of those smallvials, you need to know your
needles. It's really importantto get this right, and you need
to make sure your doctor'soffice connects the needles to
the prescription of your vials,especially if you're using a
(09:43):
specialty pharmacy, because theydon't ship needles, just because
you're getting medication invials.
Now needle sizes, or gage thatrefers to the thickness of the
needle, the higher the number,the smaller the hole the
medicine passes through. So forexample, a 25 gage needle is
thinner and has a smallermedication hole than an 18 gage
(10:07):
needle, and there's also length.
A sub cutaneous injection needleis relatively short, and this is
because it delivers medicationjust below your skin. And an
intramuscular injection needleis longer because it delivers
the medication into your muscle,which is beneath, you know, our
skin and our fat. And thenthere's the next part.
(10:30):
There are the syringes. It's asyringe and needle, not just a
needle or not just a syringe.And the syringes are usually
labeled in milliliters, so M andL, or cubic centimeter CC, and
as I found out, some of thesesyringes have much larger print
on them than others. Sowhichever you get, you need to
(10:50):
make sure you clearly understandhow to read your syringe
properly.
Now all of this is why yourmedical professional needs to
determine the needle and syringesize, because it depends on the
recipient, are you an adult or achild, the thickness of the
medication, the viscosity,right, how much you're
injecting, and where you'reinjecting, it, those all play
(11:14):
into which needle and syringe isbest.
And then it goes beyond just theneedle and syringe, because now
you have to have the right I'mgoing to call them accessories.
I don't know what else to callthem, because when using an
injectable, you don't just needthe medication. You need the
entire setup.
You need alcohol swabs forcleaning the top of the vial and
(11:35):
the injection site. You need asharps container. You've got to
throw those needles away, right?And honestly, I don't...this is
another pet peeve, I guess. Whyare all sharps containers ugly?
I mean, can someone designsomething that's better looking?
And then there are band aids.I've never needed these after an
injection, but some peoplemigh,t so having it on hand
(11:56):
could be helpful.
There's also travel to considersome medications like my
injectable interferon, requirerefrigeration. And at home, this
really isn't a big deal. I keepit in a designated container in
my refrigerator where I know itfalls within the temperatures
I'm supposed to store it in. Buttraveling that takes a little
bit more planning.
(12:18):
They do make insulated medicalcoolers, and these have
long-lasting ice packs thatdon't freeze your medication and
for long trips, think thingslike international air travel
and hotels withoutrefrigerators, they make these
kind of refrigeration tubes thatcan plug into a USB outlet to
keep cold. So it's somethingelse to occupy limited space in
(12:41):
your carry on bag.
Now don't get me wrong, Iappreciate that I have access to
medications to treat my disease,but I think it's important for
people to understand thatmanaging prescriptions can
sometimes feel like a chainthat's holding you down.
And I know people sometimes lookat me like I have four heads
when they asked me to dosomething impromptu, because it
(13:03):
can take me a bit to respond,and that's because I'm rapidly
calculating in my head, what doI need to do about medications?
So imagine someone proposes,hey, Kelly, let's let's go away
for a short trip to DC. My brainmoves on to trying to figure out
if the hotel has a fridge in theroom. Will we travel by air,
train or car? Because what Ineed to do is going to be
(13:25):
different. When do my sideeffects 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 tothink about, and sometimes that
just really makes me frustrated,but given all of that, finding a
way to make it functional andorganized is critical.
(13:48):
Developing a system and buildinga routine makes it easier to
quickly make those calculationsand get out and live life, which
is a whole point, right? Make itfunctional, make it organized.
Live well.
So how do you manage yourmedications? Do you have any
(14:09):
tips for others or tips for me?If so, visit fine, but not
fine.com. Leave a comment andlet me know. I'd love to hear
them until next time, getorganized, take your meds and
take care of yourself.
Thanks for listening to Fine,But Not Fine. If this episode
(14:31):
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
going.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
Ridiculous History
History is beautiful, brutal and, often, ridiculous. Join Ben Bowlin and Noel Brown as they dive into some of the weirdest stories from across the span of human civilization in Ridiculous History, a podcast by iHeartRadio.