Fiercely Independent Pam

Tag: stupid bladder

  • 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!

  • Are You “A Leaky Person?”: A Guide to Some Great Products

    I’m not sure if it’s a generational thing, the influence of my days at environmental camp, or reading the Lorax more times than I can count, but I have always had a desire to limit my environmental footprint. Unfortunately, as a medical mystery, I create a lot of medical waste: flushes, gloves, iv therapy, IVIG, self-cathing, and more means a lot more trash than I ever thought about. I desired to do everything I could to lower my footprint since I can’t exactly control my healthcare needs. I started with some products for my kitchen and bathroom- more on that in a different post.

    Then, I was looking for some hygiene products that would help in my goal. I was using disposable pantyliners each day and decided to start there. I found lots of options but was intrigued with a little company in Canada called Lil Helper. Their social media ads were different. They featured their founder, Uncle Mo, a self-proclaimed “rocket scientist” talking about their products and that they were for “Leaky people.” I took a chance and ordered some products to replace my pantyliners and pads that I was using. I loved the patterns and the sticky silicone dots that helped keep them in place.

    Fast forward to my hysterectomy, and the bleeding that occurred. I was happy to use the pads that absorbed a lot more and helped keep everything clean. I also slept on a pad that was unlike anything I have encountered before. This so called Life Saver Mat has saved me from a few “Leaky Encounters.

    This encouraged me to order more items. I ordered a mini sized Life Saver Mat and never thought that I would be using it several times a day. Complications from my hysterectomy meant that I needed to learn how to self-cathertize. Being a wheelchair user and having difficult anatomy meant it needs to be done on my bed for now. Insert the Lifesaver Mats- they protect my bed while also providing absorbency. I loved them so much I ordered another in my favorite pattern- the Space Dinos. I wish these products were around when I was caring for my mom- they provide such dignity to “Leaky Situations”

    They have other solutions for diapering/toileting, “spicy time”, special needs, feeding, and more! I look forward to working with this company and ordering more products in the future. I have learned that I am a “Leaky Human” and require special products to provide solutions. Be sure to check them out to fit your needs. Share with others who might have needs. Or even just like them on Facebook to be amused by their genius ads.

    https://fiercelyindependentpam.com/wp-content/uploads/2025/07/Lil-Helper-delivery.mp4

  • Learning Curve: Starting My Journey with Self Catheterization…

    So, I had an incredibly supportive visit with a urologist at MUSC a few days ago. I never regret the expense or struggle to get there, as it’s 2 1/2 hours away, but it definitely takes a toll on my body. This last visit caused a major PEM crash- I could barely get out of bed for about 36 hours. Today, I’m feeling much more like myself, but still going to attempt to keep things easy.

    Urology update: The MUSC urologist had a totally different approach than I what I was coming up against with my previous urologist. He wants to investigate the problem with continued strichers (most likely caused by multiple foley catheters). He is recommending 3 different procedures including his own turn at a cystoscope under anesthesia. Scheduling them won’t be easy but hopefully it will be worth it.

    In the meantime, I had an amazing nurse teach me, with extreme patience and cheerleading, how to properly self-cath. She allowed me to try multiple times and encouraged me along the way- such a difference than my previous teaching attempt. This allowed me to go home without a foley, which in turn helps with the intense bladder spasms I was having, never mind the chaos of running over my foley with my power wheelchair.

    The process of self catheterizing is not easy. I spent so much time attempting this task, but finally feel like I’m getting the hang of it. The learning curve is huge- still trying not to make a mess of things and the biggest lesson is to simply relax and not to stress out about the process. I’m still working on the timing and how often to attempt, but feel like I found a solution to my urinary issues for now.

    Still wondering how to handle being out and about and needing to self-cath, but that too will come with time. I want to attempt to do it over the toilet and not laying down like I have been. I just keep reminding myself to breathe, relax, and let things happen as they will. Stressing out only makes things more difficult.

    I often joke that my medical journey is going to make a “nurse out of me.” Between self-administering iv’s, picc line management, injections, medication management, iv antibiotics, iv anti-virals, feeding tube, and now self-catheterization, I feel like this is a real possibility.

    Update: I have definitely evolved from here. I am now able to self-cath “out in the wild” and over the toilet. It’s a huge relief that this journey won’t limit me. I continue to be Fiercely Independent!