Fiercely Independent Pam

Category: Health

  • Two Different Lives: What a Difference a Shower Can Make!

    Today I did something I haven’t done in years. I took a shower two days in a row. This might seem trivial to most of you, unless you have chronic illness and/or pain, you wouldn’t understand. I am not ashamed to say that usually I can only manage two showers a week, and that is with caregiver help. These showers exhaust me to the point of needing to lie down and sleep immediately after most of the time.

    With the help of my medical team, we secured additional services to help with the showering. Mainly this consisted of an OT to teach me “tricks” that conserve energy while showering. Last week was a “dry run” and we problem solved some issues. I ordered a new shower caddy to limit the amount of twisting and bending to grab bottles, soap, and washcloths. The OT also shifted my handheld closer to my shower chair. I am still researching the best sponge with a handle type of thing to reach my back and legs for rough days. I’m also awaiting a new gadget to help with applying lotion by myself.

    I haven’t talked about it much, but I use a medical wearable called Visible that helps keep me on pace to conserve energy (think spoon theory meets technology). I’ll write a post and maybe a video that goes more in depth about this powerful tool, but for now, know that it is amazing and gives real, usable data to everyday symptoms. Previously, my showers cost me an average of 1.3 points (I only get 14 a day). After these changes by the OT, my shower this morning only cost me 0.8 points and more importantly, I didn’t end up crashing into bed after. Remember also that I showered yesterday as well.

    I sometimes talk about the life I used to have versus the life I have now. Neither is better than the other, it’s about what you make of it and knowing that God, above all else, puts you exactly where you need to be. In my “previous life” I jumped out of bed and showered every day, something I couldn’t do now, but you know what? Those showers in my “old life” often were the perfect environment for daily tears when I was completely overwhelmed by my job, my situation, and life in general. I couldn’t let others see this side of me so I had to hide, the shower provided the perfect place to do this.

    So, I might not be able to shower every morning after bounding out of bed, but I no longer hide and cry in the shower. Like I said before, neither is better than the other, but the wisdom lies in the perspective of having lived through both lives. Every season or life we live teaches us something, the trick is to try to learn the lesson at the time and not through hindsight.

  • Facebook Memories: A Love/Hate Relationship

    Every morning when I awake, I do the same things. First I take off and clean my mask connected to my non-invasive ventilator, then I turn the light on, followed by checking in on my phone. The last piece always includes a look at my Facebook memories. Apparently, this day included many memories, some good, some more painful, and others are a smack in the face of my “previous life.”

    Today also marks a month that I have been home without a hospital admission since April. Almost a half of this year was spent being admitted, treated, and discharged from various local hospitals. I love being home and in my routine of things. This isn’t life I dreamed of, but it’s important to make the most of it. I am sure I will look back at this date on Facebook and see the month milestone and laugh about it.

    According to Facebook a year ago today, I ended up admitted at MUSC. My brother drove me down to the ER and they, of course, treated me well. I so wish MUSC was closer and didn’t take an act of congress to get there.

    Facebook also reminded me that only four years ago I took on a challenge. I signed up for and completed a 15 mile swim for the American Cancer Society in honor of my Dad. I collected pledges in exchange for my hard work, swimming 15 miles in a month. It was the last time I attempted something physical from my body. Swimming has always been a part of me and I am so grateful for the times I swam in college on the swim team. Hopefully once this picc line is out, I will attempt swimming again. This memory reminds me of what I use to be. I am a finisher- 3 half-marathons, a few 10K’s and lots of 5K’s made me a runner, not a very fast one, but a finisher for sure. Now, I look forward to my latest challenge- cardio rehab and working my way towards better health.

    With the exception of self-cathing, the hardest medical learning curve was when I had a peg tube. This feeding tube was my only source of nutrition and for a while, hydration as well. I was not prepared for the emotional impact feeding tube would have on me. I was confused, lonely, and missed the socialization of eating with others. I took my formula every couple of hours, hoping and praying that I didn’t throw up. It was down right miserable. There was never a cause found for my inability to swallow or digest foods properly. Another medical mystery to be added to the list. Facebook reminded me that five years ago, I claimed my life back and the peg tube was removed.

    There were some non-medical Facebook memories as well. An awesome video of Sofi swimming in my parent’s pool for the first time when we escaped there from hurricane Florence. She was so agile then and loved getting in and out of the pool. As expected, there were memories that seem so distant to me as well. These are the memories of my professional life. The computer lab working again, meetings with parents, the stress of Sunday nights.

    I am not sure I would want to re-live any of these memories, but there are there, reminders of a life that was. I am not that person anymore. My hours spent are now my own, and the focus is on improving me, not a school or something similar. I often joke that my medical journey will “Make nurse out of me, yet!” These memories that appear on Facebook, remind me of all the medical adventures that I have had.

    What about you? Do you check your Facebook memories? Are they good memories?

  • 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!