Fiercely Independent Pam

Category: Health

  • 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?

  • 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.

  • Medical Providers: It Only Takes One to Feel Better!

    Have you ever had the experience with medical providers where you feel like saying “WoW, how refreshing to not have to battle with your providers?” I am currently in the hospital awaiting a lumbar puncture and am so excited to state that this is my experience right now! The hospitalist comes in and wants to have a conversation about what is going on with me. He listens and does not put up his “guard” when I suggest something or ask a question.

    This is a treat of sorts. I am very aware that providers are unfortunately not like this as the norm. Too often, providers are either too busy/overwhelmed to take the necessary time with a patient. Or sometimes a provider simply doesn’t like the fact that a patient might actually know more about a specific condition than the actual provider.

    Michael J. Fox speaks about this situation and essentially says the patient dealing with a specific illness is the expert on that illness. Of course we need medical providers that are experts as well, but please do not discount the experience of the patient.

    This is super common with women being gaslighted to believe that their symptoms, including pain are not real. This can be too easily chalked up to anxiety, depression, or extra weight. It is so disturbing that even young, female providers do this often. I can totally appreciate the stress and enormous pressure of being a medical provider, but let’s meet in the middle and realize everyone is stressed out over a given situation.

    Tomorrow, I am scheduled for a lumbar puncture (LP). I am hoping to find some answers as well as a successful procedure with wonderful providers. I usually have excellent care with the Interventional Radiology (IR) department. They seem to love their job, as they are the “Macgyvers” of the medical world. Tomorrow also is the last day that my wonderful hospitalist is on my case. Fingers crossed that I find a provider that believes me and wants to partner with me for my care.

    So, I will wait and see. My prayers tonight are for a successful LP, that the LP provides information to direct care, and a quiet wish to be able to go home asap. What are your experiences with providers? How do you do to honor those that are excellent? What makes you draw the line and make a formal complaint? I’d love to hear from you!