Fiercely Independent Pam

Category: Memories

  • 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…

  • Till our next adventures my friend (ten years ago)…

    I have a love/hate relationship with Facebook Memories. Each morning, I usually check to see what memories are posted for the day. Usually they are filled with events that I barely remember: a crazy day at school (those happened a lot as a principal!), silly quotes, weather updates, etc. Other times, they are reminders of amazing times I spent with friends or family, and sometimes they are memories that sting a little. Things like reminders of days spent with wonderful people that have left this earth, hard days spent at work, medical happenings, or events that changed the world, all leave me with some pain. I was up early this morning and checked my memories and realized ten years ago, I escaped and made one of the biggest changes in my life.

    In 2010, my (the) school, where I not only learned what it meant to be an adult, but where I learned to love a community was closed forever. A decision that was out of my hands and control. This event shook me to my core. At the time, I thought that personally, I was doing ok- I landed heads up in another school as principal, my colleagues were finding employment opportunities, “my kids(students)” and their families were finding other schools as well. Change after all is hard, but not impossible. Little did I realize that this change began chipping my foundation, confidence, and all that I believed about my faith, my personal strength, my vocation, and my support system.

    Years 1-3 at the new school were a blur of emergencies, great people, curriculum work, and amazing events. I truly was becoming an agent of change- for better or worse. I made mistakes along the way, but I truly felt like we were “rocking and rolling.” It was hard work, but I was never afraid to get dirty and jump into a mess in order to clean it up. The hours were long, sometimes 60-80 a week, especially when you included work at home and the work was frustrating and lacking support. Looking back, I was in an impossible situation. At the same time changes at home were happening too. My stable housing situation broke apart. My housemate of the past 10 years moved back to her hometown and other friends were getting married and having kids. In someways, me- the change agent, didn’t see the impact of these changes and felt blindsided.

    Years 4-5 were lonely, it felt at times like it was “me against the world.” Sure, I had amazing friends who showed up at the ER at 3 in morning if I needed them, and there was wonderful family visits, and births of nieces and nephews, but most of the time it was me, alone with my doubts and anxiety that tore my chipping foundation, confidence, faith, vocation, and support system into shreds. The harder it got, the more I withdrew and began a cycle that I couldn’t control. I let troublesome thoughts invade my head, my chronic overthinking became the norm, and I was completely out of sync with myself. Looking back, there were signs- I wasn’t eating right, I clung to things I could control like my new habit of running and became almost obsessed with these things, I stopped seeing friends and family. I pretended that everything was all right and convinced others and myself that I was ok too. Things were NOT ok- tasks at work weren’t getting done, relationships were a mess, and stopped reaching out to my support system. I was rapidly coming apart at the seams and the more that happened, the worse it got. I made a living hiding from everything that was happening, I ran more, slept more, and began behaviors that I didn’t recognize in myself, including self-harm.

    My feelings, weren’t my own- I was numb and totally disconnected with anything that looked like my life and then I hit what was rock bottom. I thought I was pulling myself together as I began making plans, but really these plans were dark, scary. and oh so private. Questions like, how many pills of this prescription did I have and what will I tell people happened to my leg, arm, or God-forbid they see my stomach (these were always dumb answers), and would anyone notice if I wasn’t around became the norm- sometimes being the only thoughts I had. The more I welcomed these thoughts, the less I accomplished at school or home, phone calls to friends and family stopped. I knew something had to happen, but totally numbness took over.

    It was a cold night in November and I remember that I couldn’t stop or control the feelings and thoughts, I couldn’t or wouldn’t reach out to anyone, after all these were my problems and I was supposed to be able to solve them. In a rare moment of clarity, despite the raging anxiety attack, I drove myself to the ER and presented with my physical symptoms. I was treated and almost released, when I took a chance- I told the provider that I was feeling unsafe and thought I could no longer control my actions. I showed him my physical scars and injuries and shared some of my deepest thoughts; by the grace of God, he listened to me and believed me.

    What happened next was a giant blur or losing complete control- the “strip” search, the phone call to my brother, losing my always connected, always on cell phone, the constant supervision, and mostly the tears. I had never felt more alone before. Then it happened- admission at a mental health hospital. I can barely remember the first couple of days, but I was so numb that I didn’t even or couldn’t even call into work. I stayed awake for over 48 hours pacing the halls, room, and barely talking to anyone. The days eventually became night and sleep eventually happened. The days, with A LOT of work became brighter, and I met some amazing people, who like me, were clinging to anything and everything that helped make sense of their current situation.

    The medical providers desperately tried to get me to believe that I was more than my failures. Some days I believed it and others not so much! We made a plan for discharge- back to my apartment, back to being alone with my thoughts, back to school, after all in was only a couple of weeks until Christmas break. The hardest pill to swallow was the conversation with my bosses: the superintendent and Pastor, both of which, were kind, understanding, and Christ like to me during this time. I reached out to friends to help prepare me for my new normal. There were plans: for my meds and keeping only enough on hand, for sharps, and for emergencies. I now clung to these plans. I planned for every minute of my days and nights, as long as it was planned for, I could handle it.

    Unfortunately, being a school principal doesn’t allow for only as planned action and activities. Despite the intense therapy, medications and support, I quickly became overwhelmed again and ended up back as a patient in the hospital. This second admission was longer, deeper, harder, and is where I made two important decisions- that I would not be returning to school, and that I needed to make a major change in my living situation. My friends and family that were aware of what was going on, were incredible- it killed me not to tell others what had happened and what was going to happen, but I, for the first time ever, was placing my needs before others- and to those of you that I left in the dark, I am sorry.

    With love and support, I made the decision to move in with my brother, John in Myrtle Beach. I had no idea what I was going to do, but I knew that he and his kids would keep me busy as well as my continued treatment. I believed that I would never see the inside of a school again. I, for the first time in my adult life, believed that I would never step foot in a church again and stopped so many aspects of my life. My world was so small and fragile. Then, in a moment of chaos with my sisters in town, I received a bizarre voicemail from a Pastor in the area asking if I had any interest in applying for a principal position in a nearby Catholic School. “Spoiler Alert”… I landed the position and fell in love with a little school, great parish, and rediscovered my faith, confidence, and met some super people along the way! Unfortunately, this story didn’t end as planned and my health got it the way more times than I can count. But that too, is documented in Facebook memories!

  • Happy Birthday to Me!

    Today is my 46th Birthday! I love birthdays and have always tried to celebrate them for both myself and others. After the medical stuff that has come transpired in my life and the close calls, I know every birthday is a gift! Bring on the cake, balloons, and well wishes- I love it all! Being in mid-May, my birthday has historically been difficult to celebrate because of the chaos this time of year, but somehow, my family and friends always made it happen.

    I remember a lot of birthdays: In high school, my sister Cindy and her friend stuck in to the school and decorated my locker with wrapping paper and balloons. My “milestone” birthdays all come with great memories too. My “Sweet 16” was celebrated “Luau Style” in the backyard, the quintessential TGIF mudslide and more on my 21st, birthdays as a classroom teacher were wild- surprise parties, pancake making chaos and more, my 30th was celebrated at my school’s 75th Anniversary Gala and then at school with my students doing 30 “things” every hour- they jumped, sang, and more in my office, on the microphone, and outside during recess, and finally my 40th was celebrated at Walt Disney World with my awesome sisters (Can’t wait to do this again for #50!). Some birthdays ended up being “celebrated” in the hospital- Nurses made the day special! No matter where I was or what was going on my friends and family always made the day awesome!

    This year is no different. Since moving back to Myrtle Beach, I’ve been able to share my birthday with my nephew, PJ, whose birthday is the 18th. Yesterday, he was a “whole hand big!” He graciously shared his cake and special moment with me- family is everything! Today I woke up, showered (Ugh! so tiring), put on a dress, and got ready for my big day! I’ve been treated to a bouquet of flowers, a gorgeous plant for my patio, a balloon for my wheelchair, and promises of more treats!

    The lesson in all of this is that you are never too old to celebrate your birthday! You have been given the gift of life and celebrating your birthday is one way to show the world that you value your life! Eat the cake, embrace the singing, and cherish the memories!