Fiercely Independent Pam

Category: Health

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!

August 5, 2025
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?

August 4, 2025
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!)

Current Situation!

August 3, 2025