Fiercely Independent Pam

Tag: self-catheterization

  • A Floppy Bladder and a Super Early Start-

    My arrival time for being at MUSC was 6:30am. I live over 2 hours away from MUSC and hired a new driver service for this trip. Meaning we got our day started around 4, earlier to get dressed and stuff. I was scheduled for a Cystoscopy, biopsies, and urethral dilation to help determine what is going on with my bladder and why it has stopped functioning correctly.

    The good news is that all of this was accomplished under anesthesia; if you have ever been told you need to be dilated, don’t allow them to do it without sedation- Trust me! The timing was impeccable, like a well oiled machine. Quick change and wipe down, followed by consults with the urology resident, and anesthesiologist. I met my doctor in the operating room and he was exactly as I remembered him to be, caring, detail oriented , and ready to figure out my lovely, stupid bladder. For more details about my “stupid bladder,” click on the link.

    I was quickly asleep (the way I like it!) and my wonderful doctor examined my bladder and urethra. Biopsies were taken and I was dilated to a 30 French, and a foley catheter was placed (surprise)!

    The doctor shared his results with my wonderful friend, Yvonne, who made the trip with me. I also appreciated that the doctor’s notes were already in MyChart when I checked on the way home. He is addressing my bladder as “floppy.” It is one form of neurogenic bladder dysfunction. I am intrigued to find out more information from the doctor when I have my follow up. It could be from diabetes or neurological issues (and we all know i have plenty of those).

    It looks like my floppy bladder and I are going to continue to bond over self-catherization. I am glad that I have gotten past the learning curve for this process. Now, I just need a little good luck when ordering the catheters, as they seem to get lost in the mail and everyone points a finger at someone else. More supplies to keep track of and ensure I don’t run out.

    Not sure exactly what the future holds for this uncooperative, floppy bladder. I am eager to figure it out so that I can accept what needs to be done and move on. It’s the waiting that bothers me. Well that, and the fear of running over my foley again!

  • 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!

  • 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