Fiercely Independent Pam

Category: Memories

  • 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 the 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 a 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?

  • The Ultimate Decision: Finding My Purpose Beyond My Career

    I have a love/hate relationship with Facebook memories. I love seeing pictures or updates that include how little my nieces and nephews once were or incredible days with my friends. Then there are the memories that sting: hospital visits, failed operations/procedures, rough days at work, etc. There is a third category of memories, life changing events/ announcements.

    Today, the Facebook world reminded me that six years ago, with the help of my amazing doctors, I announced that I would be stepping away from my education career to focus on my health. I remember it took me a couple of weeks to get the courage to tell others. The reality was that I already knew I wasn’t going back to school, there was no way my body could handle the workload. Nevertheless, I posted the decision that not only would I not be working anymore, but that I was moving to Florida to live with my parents.

    Since I was a little girl, I knew I wanted to be a teacher. I tortured friends and family with the never-ending need to play school and be the teacher. I loved chalk, alphabet magnets, workbooks, and of course reading! I never thought of any other career path and when I realized that I could be an administrator, I wanted that even more.

    So, there I was, unable to work in a school, or really anywhere, packing up my dog and all my belongings, headed to southwest Florida. It was summertime so the sting of not being in a school wasn’t there yet and after all, it was going to be a short stint, just until I could get back on my feet and be healthy again. What wasn’t there to love? I would live in a great house with my wonderful parents and figure everything out.

    Then August came, I didn’t have to start hoarding school supplies, I didn’t buy a new planner or new outfits, I simply existed. Each day was like the one before, no students to make it different or exciting. I was a lost soul. Through the help of an incredible therapist, I worked my way through the loss of my career and everything that I thought was connected to it. Each season stung a little less and I found new purpose.

    At the same time, my parent’s health, especially my Mom’s, started to decline. Her memory issues became prominent and my Dad required more appointments and support too. I was running from my appointments to theirs. It became a rhythm of sorts, doctor appointments, medication administration, spending time together at things like car shows or grabbing a meal out on the town. I loved this more simple life.

    Then Covid hit, changing everything. We were stuck together and still needed to get medical care, especially me and my frequent hospitalizations. To this day, I’m not quite sure how I would have been by myself (well with Sofi) though lockdown and I have no idea what my parents would have done if I wasn’t there. My dad perfected his homemade apple pie, mom continued to decline, especially with a bad fall that required brain surgery, and I kept focusing on getting “better.”

    Then the hard days hit- Dad was struggling, the cancer was everywhere and he was showing signs of needing to give up. Mom’s time in rehab after her surgery left her as a shell of her former self. She was becoming a lot to handle at home and required constant care. I had multiple new diagnosis’s and was in and out of the hospital receiving treatments.

    Honestly, I don’t remember too much of the day to day events, which is a good thing because they were tough. As a family, we began making plans to move Mom into a nursing home, a decision that was not made lightly. Then Dad was in the hospital and it didn’t look good. Shortly after we moved Mom, dad took control of his own path, we lost him less than a few weeks later.

    Mom continued to live at the nursing home and I visited pretty much every day. I brought an iced cappuccino and munchkins and she would tell me stories about visiting with her high school boyfriend. The rhythm became new again. I continued to decline in health and required my own assistance with everyday things. I met wonderful people that helped me find my independence again.

    Purpose is not just our career goals. It can be so much more important. Through losing my career, I found an incredible purpose to continue to serve. My family needed me at that time and I would have lost the chance to make incredible memories if I wasn’t pushed to put myself first and stop working. You never know what crazy road God puts you on. It is our job not to question, but believe.

    This hangs in my bedroom as a reminder of my “real” purpose!

  • Happy Shunt-anniversary (4 years and counting)

    I really wanted to write something about my shunt-anniversary. That is the day that I “celebrate” for having my vp-shunt placed. A vp shunt drains the extra spinal fluid that builds up in my unique brain and dumps it into my stomach area via a catheter that runs the length of my abdomen. This is due to a condition I have called IIH or Idiopathic Intracranial Hypertension (IIH), also known as pseudotumor cerebri, is a condition where the pressure inside your skull increases for no apparent reason. This elevated pressure can cause various symptoms, most notably headaches and vision problems. It primarily affects women of childbearing age, particularly those who are overweight. I was the perfect candidate for this unique disease. I had a series of bad headaches (totally unable to be controlled, needing ER visits or admissions), eye issues like pain and double vision as well as loss of vision, and neck/back pain.

    After a ridiculous amount of ER visits, being labeled as a wimp or not being able to handle a simple headache, or a drug seeker, I was finally referred to a neurologist. The neurologist looked at my unique medical records and went on a hunch that something else was going on. Multiple tests then happened included an always fun and painful lumbar puncture. Measurements were taken of the pressure at the opening and closing of the puncture, which has to be done without anesthesia of any kind- YIKES! Mine was very elevated indicating a potential problem. Around the same time, I started seeing a wonderful eye doctor. He diagnosed me with papilledema (swelling of the optic nerve) that could cause me to lose my vision permanently if no action was taken. The combination of these two events got me a referral to a neurosurgeon.

    On my first appointment with the neurosurgeon, I was told three things, I had a weird tumor (nothing too scary), that officially was diagnosed with IIH, and I needed brain surgery (again) to place a shunt. Oh, and the surgery would be within the week. I, for the first time in a while, was rather stunned and didn’t ask my usual crazy number of questions. One thing that stood out to me was the fact that that I would lose my hair on the side where the shunt would be placed. I latched onto this thought and had to control it. So, I did what every rational person would do- I had my head shaved in advance of the surgery.

    I made a quick decision to shave my head- literally within twenty minutes of leaving the neurosurgeon’s office, as I had a pre-scheduled hair appointment. I walked in to my wonderful hairdresser and asked her to shave my head. She asked me several times if I really wanted to do it. I was determined to control whatever I could at this point and she not only shaved it for me, but wouldn’t charge me for the “cut” either. I remember driving home, bald as my father, and wondering what they were going to say. Both were in complete shock about the hair and major surgery that was going to happen so soon. I snapped a picture and sent it out to the universe announcing what I had done.

    The surgery was pretty complex and I spent several days in the ICU. I had a big incision with staples on my head as well as my abdomen. I am blessed with not remembering pain long term, but remember that my wonderful doctors including my neurosurgeon and pulmonologist rounded daily, if not twice day. After being finally placed in a regular room, I went home at day eight. I was so glad that I shaved my head because it was nasty after the surgery and caked with blood, staples, and anything else that came with the surgery including not being able to shower for another two week and only using baby shampoo after that for a while. My crazy curly hair would have never managed that sentence, plus it was summer in south-west Florida!

    My hair grew back very slowly, but healthier than ever. There were a few sunburn moments, but I quickly learned to find some awesome hats (with the help of some friends). I look back now on the decision to shave my head and realize it was one of the best, most freeing decision I have ever made.

    Having a shunt came with something I wasn’t prepared for at all, mainly the very real fear of the shunt getting infected or damaged and being so close to the brain. Every stupid infection without a simple source raises a red flag, as does each non-typical headache, or injury to the head. I can’t even count the number of shuntograms, ct studies, MRI’s, or x-rays that have been taken. I am often surprised that I am not green from radiation. Nonetheless, I would have the shunt placed again given the choice. My shunt, while temperamental and fragile has saved my vision, and freed me from the worst headaches of my life. I have to be careful around magnets, which is oh so much fun when a doctor orders an MRI and caused me to have to change things like my mask for my sleep machine (NIV) because it had magnets.

    I have some scary moments with the shunt so far. A few concussions, viral meningitis, changes in the programable valve, ER visits, trips to MUSC and more. When I moved back to Myrtle Beach, I was nervous about losing my beloved neurosurgeon, but I found someone at MUSC, an amazing woman, about my age that takes no prisoners. I like that approach! Somedays I forget that I could’ve lost my vision or that I have a foreign and expensive device in my brain, other days its one of my first thoughts, either way, its a part of me and my life story.

    I wish I smiled, but this was a few days after the shave…