Fiercely Independent Pam

Author: Pamela

  • 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.

  • 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!