Fiercely Independent Pam

Tag: stupid bladder

  • What’s Happening? Some Great Updates of Events in My Life…

    It’s been a hot second since I provided some updates, so I figured I’d try to wrap them up in one post. First and foremost, I have been here at home for more than three weeks, which is a record for me in 2025. I’ve been using this time at home to organize and put away some stuff in my apartment as well as tackling a big to-do list.

    I’ll attempt to organize my updates somewhat chronologically, but I’m definitely not perfect at that. I’m finally back to offering technology help in forms of a weekly class as well as 1-1 tech desk help twice a week. In total it’s about 4-5 hours of my time and it has a big impact on the community.

    Additionally, I am spearheading a new endeavor of a Community Newsletter. I am beginning slowly, offering it quarterly, with hopes to bring it to a monthly thing. The hardest part has been asking staff members for their input in their areas. I was told that the teacher in me is good at giving homework! We are also getting a new wi-fi setup soon, so that will be a big project for me.

    Continuing to look forward, I will be at MUSC on Monday (VERY bright and early) for 2 procedures on my bladder to hopefully determine what is causing my issues there. I will provide updates afterwards on Monday. This weekend I will also be collecting data for this procedure to help give even more information about treatment plans.

    For other health updates, I am happy to report that I am almost off all medications for high blood pressure, as I have been “bottoming out” and trending more towards a low blood pressure, which is my norm. So in addition to the compression socks, I have added a back brace/abdominal compression/binder type device to prevent blood from pooling in my lower abdomen or legs. More on this great product to come.

    I am continuing my cardio-rehab plan by adding 3 minutes to riding the bike each week, so I am currently at 13 minutes. I am excited to report as well that the new executive director has agreed to put a television in the room where the bikes are, this is exciting and will help for sure as I work towards my goal of 45 minutes continuously.

    I hope you were able to catch my videos of me using the Zeen, a new mobility device that I am hoping to get to help me rely less on my wheelchair while also giving me opportunities to strengthen my leg muscles. Check out these video updates on my fiercelyindepedentpam facebook page. My sales representative as well as my nurse advocate is working hard at figuring out the needed insurance information to get this covered. The dysautonomia specialist at MUSC (aka the “Wizard”) has actually seen and tried out the Zeen and believes that this would be a big help for me. He has offered to write a letter to the insurance company in addition to the necessary prescriptions.

    In other updates, I am working on getting some brand ambassador/affiliate work with some companies where I really believe in their mission. You will see some posts about these products that have positively impacted my life. Please share these with anyone who might benefit. I appreciate the support. If you aren’t into shopping, just feel free to ignore these types of posts, but maybe you will see something that will solve a problem for you or someone you care about.

    Please know that I appreciate your support of this blog and my social media presence in general. Please help me spread these updates and my journey with others that might be interested. I want to spread my work to as many people as possible.

  • 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