Tag: Chronic Illness

  • Medications: Am I Just A Seagull? Organizing my pills and more!

    I have completely lost count of how many medications I take throughout a week or even daily. I try to cut out medications as much as possible, but it seems that someone always wants to add “just one more!” I believe on average I take 12-15 pills in the morning and at night, plus a mid-day dose of 2-3. This is of course not including pain meds or other “as needed” medications or injectables.

    I see many specialists for my various conditions and each prescribe medications as needed. My primary care nurse practitioner is wonderful and she does the best she can to stay on top of all of my meds. Unfortunately, mostly due to cost or insurance rules, I have to use multiple pharmacies. This causes some confusion, especially to a provider that is new to me.

    You may ask, “How do you manage all those medications?” I try very hard to stay organized. I use a google doc that I update with every change in medication. I print this form and give a copy to my PCP, in my “Vial of Life” that sits on my fridge, and one goes in my purse. The advantage of using google docs is that the updates are easy, and it lives on my phone for emergencies.

    Another way I manage medications is through a device called HERO. A HERO machine is a pill dispenser that allows up to a 90 day supply to be inserted into capsules in the machine. Then, using an app on my phone I can program the machine to remind me to take my medicine and needed times of the day. It’s also great for caregivers, as you can get alerts if someone misses a dose or tries to take an extra dose. Unfortunately, the HERO doesn’t allow for all my meds (it takes up to 10), but I use it for my most often (longest used) meds.

    The pills that do not go into the HERO, as well as the ones that are dispensed from the HERO, I usually take all at once. I have always been a great pill swallower, and I greatly appreciate my ability to swallow many pills. I saw this quote below, I laughed so hard that I knew I needed to share it with a blog post. It paints such a visual of what I feel I must look like swallowing so many pills.

    How do you manage your medications? Do you use a pill box or something else?

  • Home Again and it Feels So Good!

    Success! I’ve been home for almost 48 hours, which these days is a record for me! I am absolutely exhausted but getting back into a routine and good sleep are helping. The true test will be tomorrow when I resume my technology offerings here in my community.

    I find routine the number one thing I can do to stay healthy and on track. I try to get to bed around the same time each night, an early 9ish and get up around 6:30 or so. Sometimes I need to go back to bed in the morning and restart again, but I try to stay out of my bed during the day.

    One of the greatest purchases I have made for the purpose of good sleep habits at home is my light/fan fixture. It’s an enclosed ceiling fan and led light combination. I have several light modes such as night, casual, reading, and work. In the morning I usually set it for work, which is quite bright, during the day if I need it on, I set it for casual. While getting ready for bed, I set it on night, which helps a lot.

    Other things that help set the mood include blue blocking readers (I use during the day as well as getting ready for bed). Trying to stay off my phone(this one is hard) and using audio books or meditations to listen to that help me fall asleep. I’ve been doing better about not waking up in the middle of the night and being so awake that I try to get things done. Usually, I am able to simply go to the bathroom and hop back in bed.

    Being home means that I am able to complete tasks and errands like grocery shopping, prescription pick up, and just grabbing a snack or drink. It’s a sense of independence and freedom that you never feel in the hospital. I long for independence and being restricted means I get more frustrated easier. How do you deal with frustration? What works for you to stay calm and collected the whole time you are hospitalized?

  • My Love Affair with a Hospital: Adventures at MUSC

    Well it’s been a hot minute since I’ve added a new post. I have been busy with health stuff including making a transfer of sorts from a local hospital in Myrtle Beach to MUSC in Charleston. I love MUSC; I love the team centered approach, the willingness to think outside the box, and most importantly that they put patients ahead of profit. I went from needing another brain surgery to “just” needing a tune up of meds. Such a relief.

    So, I said my transfer was unique. I decided that I needed to make a change in care as I was simply spinning wheels at the local hospital. They were making calls and shot and hoping they would work. So, I decided to take a giant leap of faith and discharge from the local hospital and find a way to MUSC.

    Luckily, I have an amazing tribe (See here for a post dedicated to them). My dear friend answered the tribe “bat call” and agreed to bring me on Monday. It was a leap of faith for sure because there was no guarantee that I would be admitted, but I was and here I am! I cannot stress enough the importance of having a tribe- and do not be afraid of adding new people, sometimes they just need to be asked.

    Beyond the excellent care and better food, I love having a team of med students- attendings guiding my care. I hope my case teaches them something too. They all treat with care and understanding instead of the bare minimum just to check off a box. MUSC truly is a special place.

    Now comes my biggest hurdle, transportation. I no longer drive and rely solely on others to get around. Usually for any local trips, I am able to rely on the bus at my community. I also got a text message from a new local company that I recently tried that just purchased a wheelchair accessible van! Of course there is a fee, but I feel like that has opened some doors for me. Never stop looking for solutions.

    Until tomorrow, I am safe, pain is being managed, and transportation will work itself out somehow. It’s much easier to “keep the faith” when you are at a place like MUSC.