Fiercely Independent Pam

Author: Pamela

  • 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?

  • Newest Health Update: Guess Where I Ended Up?

    This update is coming from no other than the fifth floor of the south tower at Grand Strand Medical Center- my home away from home! UGH!!

    I was minding my own business, and went about my appointments on Wednesday through Friday. It was a total of 6 appointments. On Friday, I was beyond exhausted and tired of dealing with the headache, eye pain/double vision, and a neck that was getting more stiff by the hour.

    Let’s start with Wednesday. I had 3 appointments planned for a great adventure to MUSC. I am forever grateful for a good friend taking me, but the trip did us both in.

    First up at MUSC was an endocrinology routine appointment. I was touching base about my adrenal Insufficiency, diabetes, and pituitary tumor. I left with lab requests, new insulin scales, and a wait and see with the tumor.

    My second appointment was with pre-op (for a bladder procedure on September 8th)They were very detailed orientated and I met with a nurse, doctor, and anesthesiologist. Feeling beyond confident in their hands for 8/6.

    The third appointment, was an adventure to say the least. I was told when I got there that it was much involved than I thought it would be. A catheter would be inserted by urology, then contrast would fill my bladder and pictures would be taken. I was told that people usually need 2-4 bottles of fluid before needed to void. Well at bottle 7 they decided I was full enough. I wanted to pee so much, but of course nothing would come out beyond a couple of drops. I strained and strained too, but no avail.

    So they allowed me to try to void in the toilet, but that was a limited amount too. They took a ton of pictures and then let me cath myself and took more pics. MyChart would provide an update, but need to wait for input from my urologist.

    Finally it was time to go home and we both enjoyed dinner from Raising Cane’s and were beyond zonked!

    Fast forward to Thursday- a head ct to prepare for my neurosurgeon’s appointment on Friday. This was followed with A LOT of napping/chilling out! I also had an amazing dinner with my 2 “grown up” nieces- it was wonderful!

    Now I am stuck at the hospital again. I never made my appointment on Friday (long story) and tried to find a way to have my neurosurgeon give me some advice about the symptoms I was having. Was told to go directly to the ER and get treatment. UGH!

    Click Here for more information about getting my VP shunt and being diagnosed with IIH and/or Click here for an update about my previous admission.

    I am stuck in a crazy cycle: something is wrong with the shunt, but a lumbar puncture (LP) can’t be done until my blood thinners are out of my system. So, I wait, again! In the meantime, neurology put me on antivirals just in case it is meningitis again (viral not the scary bacterial kind).

    I have wonderful nurses and now I am with my favorite doctor here. As I’ve said before, heath care trauma is real and has a lot of consequences for the patient, provider, and others. It’s easy to dismiss patients when they are “profiled” as almost anything, but having mental health diagnoses makes it even easier to profile a patient and not usually in a positive manner.

    My next update will be after my LP on either Tuesday or Wednesday. Between then and now I will practice my patience and try to keep busy! (which would be a lot easier if I didn’t have a bed alarm!)

    Picture of a laptop with wordpress opened and in the middle of writing a blog and hospital room things in the background (TV and wall charts).
    Current Situation!

  • Finally Progress is Being Made: New Appointments and Staying Home!

    After a long time of being in and out of the hospital since the end April, I finally am feeling more like myself, getting stuff done, and most exciting of all: I finally got an appointment with the dysautonomia specialist (neurologist) at MUSC. It’s not until August 27th, but still that is less than a month away! I have been waiting for his calendar to open up since it was announced that he was starting at MUSC. Major progress milestone!

    I’m really hoping that he has some ideas about what I can do to treat my dysautonomia/POTS/Neurocardiogenic Syncope/Orthostatic Hypotension. Wow, that’s a mouthful! I am trying not to get my hopes up too high in case he brushes me off, but am confident in the care MUSC provides.

    Until then, I am plenty busy with other appointments- both in person and virtual. I am so thankful that I am able to stay organized and on top of my appointments, as it’s a hot mess when I am not on top of them.

    In other news, I am feeling like a master at self-catherization. I have found a catheter that I really like, got them delivered, and can even cath almost blind(without a mirror) while on the toilet. This is so much easier, cleaner, and more independent than cathing on my bed! The true test will be when I am out and about for 3 appointments at MUSC this Wednesday.

    I also received a nice letter from the hospital about the progress of my formal complaint regarding the care I received from 2 different providers at a recent hospital stay (See https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/) for details about that adventure! The hospitalist medical director sent the letter and indicated that an investigation was completed and the providers were “schooled” on what went wrong. I have a call in to the medical director to discuss this further.

    In other worlds of my life, I am excited to help welcome a new Executive Director for my community. I met with her individually on Friday to introduce myself, share what I do with the community, as well as any thoughts and ideas I had. She seemed to understand my concerns and thoughts. This is major progress for our community. I was impressed with her take on the community thus far. I am genuinely praying that she will stay and make our community stronger!