Fiercely Independent Pam

Tag: self-catheterization

  • 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!

  • 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!