Fiercely Independent Pam

Tag: self-catheterization

  • The Hard Work Begins Today: A First Day of Inpatient Rehab!

    So it begins.. I arrived at inpatient rehab yesterday after a few delays mostly because of the weather (crazy snow storm!) I ended up paying for transportation and it was a good decision since I am still having problems standing up and transferring.

    I was beyond welcomed by the staff here for rehab and they have been wonderful! I am confident that I forgot a few things, but hopefully I can have some help from my family. I am super excited to start working hard- I will receive at least 3 hours of pt/ot each day, which is exactly what I need. Right now I am finishing my Bible in a Year Podcast, which is nice to be able to stay up on.

    I am looking forward to unpacking my stuff and setting up for rehab, as I packed up pretty decently including lots of pants and t-shirts, but missing catheters and a watch charger! All in good time! For my first night I am wearing my special Buckee’s pjs that I picked up when I was there for my interview. It was a fun nod to what I have accomplished already.

    I think I have said this before, but wanted to update people about the progress of the service dog. In addition to the service dog, I am continuing with rehab. The next steps is to have a site visit here at my apartment and they will also be bringing a dog to help me demonstrate some skills, hopefully at the grocery store. This should be taking place after the committee meets- around late March/ Early April. I am thankful that they are willing to come here. From there, the next steps would be to be accepted as a formal client and begin fundraising for team training and similar. Then begins the “Fun” part!- Something special PAALS calls “Speed Dating” where we make sure the right connection is made between a dog and the “handler.” Eventually, team training will take place, but this is a far way off. All of this is super exciting!

    In the meantime, I will be working hard at standing and completing rehab goals. I am not sure exactly what it means to finish my antibiotics and future doctor’s appointments, but I moved as many appointments as possible. Time to track down what I am missing!

  • An Un-Modest Update on My Stupid Bladder!

    Now that I have “mastered” the art of self-catheterization, it has just become part of my everyday (well every 4-6 hour) lifestyle. I am successful outside of my own bathroom and having few issues with the process. The biggest point of frustration with my bladder and the process is having to be always prepared. I have a small cosmetic bag full of any necessary supplies. Most of the time, I remember it if I am going somewhere without my wheelchair(I keep it on the back of my wheelchair).

    In the spirit of losing all modesty, medically speaking, I also want to disclose my other issues with what I like to call, “My Stupid Bladder.” I am dealing with incredible urgency issues- like a 3 year-old- who just left the house after being told told to use the bathroom before getting in the car, but of course did not have to go- issues- BOOM! They can be painful and because of recent events, I cannot move quickly to get to the toilet all the time. If I am out of my apartment, it complicates matters even more.

    Additionally, despite not being able to successfully urinate on demand, my stupid bladder leaks. This I believe is the worst symptom, as it is unpredictable, unpleasant, and embarrassing. I have found good success with my favorite Lil Helper reusable pads and “system” These usually prevent leaks from being a bigger problem, as I stubbornly refuse to start bringing a change of clothes with me places. I highly recommend them for both urinary and period issues. SO much more comfortable than disposables and such a better option for the environment. They are super easy to “deal with and clean.”

    This past Thursday, I went back to MUSC for more bladder studies and an appointment with my wonderful urologist. I completed a urodynamics video study that required not much more than my lack of care for modesty. Basically, I sat on a converted table-to-chair where various catheters were placed to record bladder “strength” and other measurements. I then received a large amount of fluid into my bladder that contained contrast material. During the filling, various x-rays were taken of my bladder and vitals were kept.

    The nurse recorded when I reported that my bladder was feeling full and would need to urinate soon, needed to urinate immediately, and feeling immense pressure to urinate. She then told me to try “going” which of course was unsuccessful. She then cathed me and I felt immediately relieved!

    After cleaning up, changing, and getting settled into a regular room, the urologist came in and started talking. The study showed that although my bladder can hold a large amount (thank you teaching), it cannot empty on its own. So in addition to being “a floppy bladder,” it also shows signs of detrusor under-activity (essentially the muscle used to empty the bladder is weak). He recommended trying an additional medication to help with all my symptoms as well as starting botox treatments for my bladder.

    Botox would be administered via the urethra and would involve many injections each treatment(30-50). None of this sounds like fun and would need to be repeated every six months or so in the urologist’s office. The upside would be that If/when it works, I should be completely dry! So that part is very exciting! I am signed up to start in 6-8 weeks.

    So there it is. There is nothing glamorous about any of this and yet the self-catheterization process is in a weird way, empowering. The learning curve was steep and medical professionals seem to always be impressed that I mastered it. I see it as one more thing to keep track of, that is needing to always be sure I have enough supplies on hand, do my part to prevent UTI’s, and keep smiling!

    I will be sure to keep you updated on my bladder, and I was about to apologize for the more “graphic/medical” approach to this post, but feel strongly that more information needs to be shared about this “private” matter. Like I said, my modesty is out the window, anyway! Please reach out to me if you have any questions, especially if you are going through bladder issues.

  • 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.