Fiercely Independent Pam

Tag: Chronic Illness

  • 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!

  • The Hospital: What I Pack, Bring, or Acquire That Makes My Stay Better

    I am a frequent flyer patient at any given hospital. In any month, I can be in more than I am out. (See Here for more on that). I thought it was time to give some information that makes a stay a little more pleasant.

    Being Ready:

    I designate a large tote bag to always have available for visits to the hospital. It always has fresh underwear, a change of clothes(be sure to change with the seasons), and small bottles of medications that I take and the hospital doesn’t carry. I also keep a 10 foot long charger for my phone in my purse- this ensures you always have a charger. The length is crucial to the flexible needs of the ER/hospital rooms.

    When Time Allows:

    If I have time to pack a few more things, I always bring my Owala water bottle. I also pack other medications that I might need. Sometimes I leave this to be brought once I am settled, especially if they have to be refrigerated. I love my water bottle and find it super helpful in a busy hospital(if you are in the ER, be sure you ask if you are allowed to drink water).I find having the water bottle filled up 3-4 times a day into night allows for colder water, less spills, and you bother the staff less too.

    For Longer Stays:

    Sometimes, if I know I am staying for a few days, I ask a friend or family member to bring my laptop, Kindle, and/or my fun crocheting kits. I try to keep these things in the same spot so I can tell them exactly where they are at home.

    Once I am settled in a hospital room I do several things to improve my stay. 1) Be sure to ask for a menu, often times there are options you don’t know about. My favorite “secret menu” item that I found is a hummus/vegetable/pita plate, this is wonderful with some soup for lunch. 2) Don’t be afraid to ask for specific items on your meal tray. I always ask for two unsweetened iced teas. I drink one with the meal, and keep the second for when I want to drink something other than water. 3) Ask if they can give you bottle water with your meals. The water tastes better than tap (especially in Florida) and because they have a cap, they are handy to keep on your bedside tray. 4)Don’t be bashful to ask for things like toothbrushes, toothpaste, and soaps. I try not to pack these things to cut down on germ transfer. I never bring my own pillows or blankets for this reason.

    I also ask for wipes of all kinds. The purple CHG wipes are harsh on your skin, but helpful for keeping things like picc lines or other lines clean. The blue wipes are great for bedside baths and issues in the bathroom, just don’t flush them. If you have a foley in, you should ask for the green package wipes to wipe down the foley multiple times during the day. I also like to use the no rinse foam cleaner as opposed to liquid soap. It’s common knowledge that any wipes or cleaners left in your room at the time of discharge are going to be thrown away, so feel free to bring them home for use there.

    I pass the time with watching tv, blogging/surfing the web, and completing crocheting kits from Woobles, or listening to an audio book. I find when I bring something along with me or brought later, I am able to feel busy when I am feeling up to it.

    What are your favorite ways to be prepared for hospital stays, or what do you pack/ask for during a stay? Any favorite products or bags you love to use?