Fiercely Independent Pam

Category: About Me

  • 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.

  • Gifts: My Formal Love Language

    Yesterday, I received an unexpected gift from someone. This gesture made me think about gifts in general. I love finding the perfect gift for someone. Sometimes this means I randomly give a friend something for no “real reason” except to see their reaction to what I found. Other times this means that when I am expected to give a gift, say a birthday or holiday, and I can’t find something “good,” I get frustrated. Gifts are definitely my love language. I love giving and receiving them.

    As an educator, my desk, office, or classroom was always filled with special gifts. Sometimes it was a dandelion, other times it was a memento from a family trip. They were and still are special because a child or parent thought of me when they were doing something else. My apartment (and storage unit) is filled with these special gifts. I love seeing them on a regular basis. For the most part, I can tell you who gave me what and what the occasion was. From the little Eiffel Tower from Paris to the set of diamond earrings, they bring a memory to life for me.

    I am blessed with many friends who love to give gifts too. The many treasures throughout my apartment that remind me of deep relationships with college friends turned sisters, roommates, and mentors throughout the years. I am a sucker for a good memento and my dusting challenges reflect that. After I moved into my current community, I was able to unpack these important pieces of my life. The chalkboard piece from SHM School, the random Mickey ears from Disney trips, my collection of crosses from students and families, and of course my favorite M&M collectibles, all have a special place in my living quarters as well as my heart.

    Gifts are a way to share a special moment, they allow us to speak of love without saying a word. My inbox currently reflects a random purchase for a friend. Not for an upcoming birthday or event, but just something that I know speaks of caring for that person- a simple, “I thought of you today.”

    How do you gift? Do you like giving and/or receiving gifts? What is your most treasured gift?

  • 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?