Fiercely Independent Pam

Category: Health

  • 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

  • And So it Goes… Life as a Frequent Flyer

    As a kid I was labeled as a frequent flyer in the nurse’s office. Always with a general “I don’t feel well” complaint. Never ran a fever so I didn’t get to go home. I knew even then that something was up with my body, but it took over 35 years to figure it out. My immune system is not normal and doesn’t present normally. I have been severely septic and was not running a fever.

    Fast-forward to today. I am currently in the hospital again, awaiting discharge after 3 nights. My blood pressure was dangerously high again (I cried “Uncle” at 250/100)! My head was hurting a lot and my chest pain returned. The ER docs/nurses were fabulous as well as the rest of my care here at Grand Strand Medical Center. I had 3 specialists working my case and one was better than the next. It is experiences like this that help rebuild my trust in the medical field after poor experiences (see https://fiercelyindependentpam.com/the-need-for-trust-in-the-medical-world/ for more details about my latest adventure that created even more mistrust)

    So, since the end of April, I have been in the hospital more than I have been out. This alone gives me the title of a “frequent flyer.” I wish I was talking about the airline program that gives points for future travel, but the only thing I get is bills and more doctor appointments. I know this isn’t anything to be proud of but it gives perspective for sure.

    I also had a weird experience of running a fever for almost 48 hours, but luckily that broke overnight and my white blood count never got out of control indicating that is was probably a random virus. I was feeling extra crappy during the fever as well.

    It seems like the doctors finally figured out the correct meds for me to take to control the blood pressure while discontinuing other medications that were making my blood pressure rise. My neurosurgeon also readjusted my vp shunt. (see https://fiercelyindependentpam.com/wp-admin/post.php?post=148&action=edit for more details about why I have a shunt)

    Here’s hoping my blood pressure stays under control and doesn’t go to dangerous levels (either too high or too low). More than anything, let’s hope that I stay out of the ER and hospital for a good amount of time!