Fiercely Independent Pam

Author: Pamela

  • 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…

  • Having a Tribe:Family, Friends, and Staff, Oh My!

    Well, I am back inside- not the big house but the hospital-Again! My blood pressure, which usually runs low is through the roof, I called an ambulance when it reached 250/100. Nothing cardiac going on, but still not able to figure out what is causing the high BP and chest pain. In the meantime, I was pulled off all my meds that could raise my blood pressure, mainly my steroids that I take for adrenal insufficiency. Being off of them is making me feel pretty crappy. That coupled with needing a foley catheter again and continued pain, has me searching for some positives.

    I found hope in a great place- mainly what I am now describing as my “Tribe.” These are the people who together we help each other out and just make things happen. I could not survive without my tribe. My new friends at my community who, despite their own disabilities come visit me with cookies in hand and are available to hear me vent without judgement. My tribe includes the caregivers and employees at my community who do amazing things like look after my plants, or bring me the medications I didn’t bring with me.

    They are all there for me and I just hope that I am always there for them as well. I guess my biggest piece of advice on finding your tribe is to be open to help from anyone and everyone who is willing, you never know who is actually going to be there for you. Likewise, you need to show up for your tribe, be a friend, and most importantly listen to them!

    It is equally important to consider and recognize those that are NOT in your tribe. Those that gaslight you into thinking that your symptoms aren’t real or blame you for your conditions and even those that try to offer advice sometimes. This is a hard pill to swallow as sometimes those that you have to recognize as not part of your tribe are the people you desperately want to be your biggest cheerleaders. People’s lives are busy and we need to recognize that. Often, just like not blaming a person for their chronic illness, we need to respect that life is messy and we cannot blame people for not being part of our tribe.

    The bottom line is that it still hurts when someone can’t be there for you, or when you can’t be there for them. Relationships are messy and just because someone can’t be part of your tribe, doesn’t mean that you can’t like/love them. Our tribes change almost day by day, but relationships with friends and family always remain.

    I am so thankful for my past tribes, and in a really special way, my current tribe. I hope and pray that I am a member of standing in other people’s tribe by giving and showing up for them. A cookie in hand goes a long way.

  • 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!