Fiercely Independent Pam

Tag: stupid bladder

  • Being Positive Smells SO Much Better than Negativity

    I really try to be positive and spread positive thoughts. I am an optimist by nature and believe the best is going to happen. At least, most of the time. Yesterday threw me for a loop to say the least. Instead of my usual positive thoughts, I quickly spiraled into negativity.

    I know how it happened, first my toilet flooded my bathroom. This was followed by being given some bad news at my tele-health doctor’s appointment. Then, I couldn’t schedule my MRI for my hip. I created my own misery and couldn’t get out of it. My usual, positive vibe was no where to be found.

    The toilet flooded because I had a new grab bar type contraption installed due to my potential hip fracture. The contraption made the tank sit uneven, causing it to leak and spill all over the floor. Maintenance was wonderful and took care of everything, but it was still frustrating and definitely not a pleasant or positive event!

    My tele-health was with my urologist at MUSC. It was a follow up from my previous procedures for my “floppy bladder.” I’ll spare you from the nitty gritty details, but I was essentially told that I will most likely have to self-catheterize for the rest of my life and that there is little that can be done to change that. He is going to have me complete a few more tests to see what can help improve the situation, but he was very honest about the fact that he wouldn’t be able to change the outcome too much, even if insurance does approve some things like botox injections and some medications. This hit me HARD! There wasn’t many positive points from the doctor, despite my full respect for his knowledge.

    If mental funk had a smell, I would smell like teenage boy after gym class for sure. I sulked for a while, tried to distract myself, and went to lunch with some of my favorite residents. None of which helped me change the negativity to positive thoughts. I pouted, told others of my woe, and I would’ve stomped my feet if it didn’t hurt so much.

    So, I did something about it… no I didn’t try yoga, deep breathing, meditation, or even prayer- I slept. That’s right, a good ole nap. With the lights and television off and locking my phone to silent, I vegged out and napped for about ninety minutes. I woke up and took stock of my mood, not rainbows and butterflies, but much better. I was officially on the side of being positive over being negative. I went to dinner, laughed with a friend, and decided I was over it.

    Then I did my usual wind-down routine before falling asleep, all knowing that tomorrow was another day to try to stay on the “Sunny Side of Life!” and be positive for myself and others. I did my usual 2am wake up and had a BIG thought… what is stopping me from using the NuStep Bike as an arm bike? That is, why can’t I continue my cardiac rehab using my arms and not my injured leg/hip? Positive thoughts beget positive actions… I need to reboot myself once more to be able to find my frame of thinking.

  • 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!

  • 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.