Fiercely Independent Pam

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  • 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?

  • Help Wanted: Wet Noses Only- Dreaming of My Service Dog!

    Earlier this year, I began the process of applying for a mobility service dog. I tried several national organizations, but either I was in the wrong season, or they weren’t taking any new applications. Disappointed, I continue my searches and found PAALS (Palmetto Animal Assisted Life Services), right here in South Carolina. I was intrigued by their mission to provide service dogs for various needs.

    I instantly knew this organization was for me. I believed in their mission, loved their fundraising ideas, and the size seemed perfect. Attaining a trained service dog, wasn’t going to be easy, but not only worth the wait, but I found a new non-profit to support.

    I began filling out the lengthy application online, I believe it took me close to 12 hours to complete. Then I gathered letters and forms of support from friends and medical providers. All was complete and I confirmed receipt with PAALS. I began following aka staking their facebook page and spreading the word about PAALS as well as my (hopeful) future as a service dog handler (DOG MOM).

    When I decide to do something, all of me is invested. I decided that I was going to manifest a service dog into my life. It became the major topic of conversation at meals and with friends. My saved Facebook ads required their own folder, “Service Dog Stuff.” This folder ranged from crocs for dogs to fun toys and tracking collars. I love dog stuff.

    Around the same time, I met new friends here at my community, who have a service dog. She is wonderfully sweet and semi-retired. I learned more about legal issues around service animals and the commitment to having a service dog. I knew this was a sign that in the not so far future I would be a Dog Mom again. My family thinks I’m crazy and worries about taking care of the dog when I am sick, but I have provisions for that.

    Now, fast forward to recent times. My dreams are filled with images of a fluffy dogs with wet noses living in my spaces. I look forward to sharing my bed with a giant lab who will leave “glitter” all over the place. I am ready to share my life with a wet nose, funny antics, and lots of toys!

    My goal is to publish the process of team training and bringing my Service Dog home. I know he/she will steal the show. For now, I will continue to show restraint and not call/email PAALS to bug them for an update. My heart and mind are ready to welcome a dog that will 100% change my life. Stay tuned…

  • 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!