Tag: mental health

  • 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!

  • Get Well Soon?

    “You have such a good attitude” or “You aways are positive,” etc. I am a big believer in faking it until you make it! I am not always feeling positive or feel like smiling, but it’s so much easier to fake feeling good than to own up to feeling lousy. Nobody wants to be around someone who is feeling lousy or cranky. I like to be around people and not alone, therefore it’s in my best interest to try to stay positive and smile through the chaos. I’ve tried the “pity parties” and they frankly are not fun. I do believe its important to reflect and acknowledge how much is going on, but then its time to move on.

    Chronic illness is no joke- the stress of realizing you are never going to get better is exhausting. And explaining that to others is such a hard thing to do. Everyone wants to say “feel better soon” or You’ll be back to your old self soon.” This is just not true and sometimes it’s just not worth the energy to correct people, even close friends or family. So what do you say? How do you tell those around you that something else is wrong?

    Then there is the never ending suggestions of everything from yoga (which I love, but isn’t going to fix me), oils, diets, and everything in between. I’ve spent more money than I chose to say on various fixes, only to be disappointed. I love you, and I promise I am doing everything I can to feel better, but your latest google searches or ideas aren’t super helpful all the time.

    What can you do to help? Listen to me, ask me what I might need, stop by unannounced, distract me with your wonderful news, support my decisions, pretend everything is ok, and most importantly, try not to ignore or hide out from me. I know I am A LOT- I promise, I would change if I could.

  • Infusion Day(again)! My Adventure with PI (the short version)…

    My whole life has been plagued by various infections, weird viruses and assorted “stuff.” There was the twice yearly pneumonia battles, various skin “things”, and constant chest and/or sinus infections. No one thought much of it, but it caused a lot of missed school and that of course made everything more difficult. Other issues like constant episodes of passing out, high heart rates, and asthma symptoms masked the constant infections. It was a parade of doctors visits, antibiotics, and lots of naps.

    Fast forward to adulthood and taking charge of my own healthcare and I found myself wanting some answers. I found an incredible asthma/allergy/sinus specialist in Baltimore who helped me partially sort out some of this mystery. I was placed on lots of asthma meds (even Xolair) and for the first time someone was tracking the oddities of my infections. There were more antibiotics, but my asthma was under better control and I was even going to start allergy shots (if I ever got “better.”) I still managed to get pneumonia at least annually, which usually meant at least an ER visit, but overall things seemed to be improving. Again, other health issues got in the way and took priority.

    When it became time to leave Baltimore and move to Myrtle Beach, I was a hot mess-(more on that in a separate post). I landed in Myrtle Beach and quickly tried to situate medical providers. Through a series of failures and dismissals, I found myself at MUSC in Charleston. I navigated this new health care system and found Dr. Cox- a dual trained and certified immunologist/pulmonologist. I shared my medical history and besides having an awesome plan for my asthma, he had a hunch about something and wanted to run some bloodwork. After a few more appointments, a vaccine challenge and some more tests, I had a new diagnosis- I had a Primary Immune Deficiency, and he suspected that it was CVID (later this was changed to a general PI). I was to start on infusions that I would learn to do myself (subq) of immunoglobulin. These weekly infusions would act as a booster to my immune system since it was essentially a piece of junk and I struggle to make antibodies to protect me from infections. I failed the vaccine challenge, which meant when I was given the pneumonia vaccine, I failed to mount an immunity to any of it. Essentially my immune system said “No Way!” Infusions would provide me, temporarily with antibodies that “normal” adults have. These infusions are made from plasma donations and are very expensive.

    I went to an infusion center and a nurse showed me how to give myself the medication in either my thighs or abdomen. I believe I started with six needles (lines) and used Hizentra as the first medication. It also required use of a pump that I turned to activate and took about an hour total. The nurse told me I was good to go and to repeat the infusion every week. I took home my giant bag of medical supplies and little did I know that my life would forever be changed. I appreciated the freedom that I could not only do my own infusion when I was able to fit it in my busy principal/family life, but quickly become inundated with medical supplies and the “pressure” to schedule my infusion. Some weeks it was easy and didn’t interfere with my “life,” other weeks, when it leaked or caused bruising or something didn’t work right, it stressed me out, but I persisted because I was getting less infections and my IGG level was finally going up and reaching towards my goal of over 1000.

    Overtime, my dosage was adjusted a few times, but I fell into a rhythm with the infusions, I had what I thought was a ridiculous amount of medical “stuff” (little did I know what was to come!) and it became my new normal until I had a bad infusion and developed aseptic meningitis for the first time. I had a terrible headache, neck stiffness and felt really “bad.” I went to the ER and they did a spinal tap (in the ER by a ER Doctor and not a specialist- OWCH!).

    After recovery from meningitis and having my infusions on hold, I developed several infections. Dr. Cox to the rescue and adjusted my infusions. I was finally back in business but still a medical mess with other symptoms and conditions to be treated. I will chronicle these adventures in a different post, but long story short, I was forced to first leave the principal job and step back into the classroom (while I truly mourned this loss, I LOVED being in classroom as a 4th grade teacher!) After a while, my health guided me to a place where I had a serious conversation with Dr. Cox and he helped me realize that I was no longer able to work and needed to take, what could be a permanent leave, and begin the process of filing for disability. I was at a complete loss and didn’t know what to do. I could not afford to live on my own, had my dog Sofi, and was so sick, I could barely take care of myself. I remember making a difficult call to my mom- I held back tears when I simply asked if Sofi and I could move in with them in Florida. Of course they said yes, and within a month, I packed up my RAV-4 and Sofi and I made our way to Punta Gorda!

    I found an immunologist in Naples (about 2 hours away) and he changed my immunoglobulin to Cuvitru and I was still infusing weekly. After two rounds of meningitis, more spinal taps, and hospital stays, it was decided that I needed to infuse smaller amounts more frequently. We together decided to infuse a small amount every day. In total it took about 30 minutes and I of course was delivered even more medical stuff. I found ways to organize it, but daily infusions took their toll on my overall mental health, I felt like I couldn’t escape the reality of always being sick.

    Then chaos struck, I was super sick in the hospital and no one could figure out what was going on- my neurosurgeon (by this point had a vp shunt) decided to do another spinal tap and doing extensive testing on the spinal fluid. I remember him coming to my hospital room with the news that I had viral meningitis and needed to be put on strong IV antivirals among other things (lots of other things popped up from the spinal fluid- but were tabled for now).

    After successful, but difficult treatment for viral meningitis, my immunologist had to figure out what would be next for my PI. We made the decision to change to IVIG (which meant getting a port since my veins are junk!) and he chose Acentiv as the drug of choice. After a long insurance approval process, I began receiving this new product at home with a great nursing team. This is what I still receive every 14 days and the whole process takes about 7 and 1/2 hours total.

    I absolutely love my nurses that spend the day with me- we talk, order yummy lunches, and I finally feel less burdened by my Primary Immune Deficiency. It’s funny to me that when I was in control of the process, I struggled, but now that I have to depend on others to help, I finally feel better abut it.

    I skipped a lot of trials and tribulations including needed 3 different ports, being septic and in the ICU (not once but at least twice), GI issues that some believe can be attributed to PI, more PICC lines than I can count, and most crazy- my year long adventure to get a fistula for IVIG. I am so grateful for my new MUSC immunologist, Dr. Williams, who has been an advocate for me and helped right the ship on this crazy journey.

    So that was my day. This time I had a substitute nurse, but we talked the day away and with the exception of a needy pump (it likes to beep), it was a successful infusion. Tomorrow I may wake up and feel great and ready to take on the world, or I may fell like I got run over by a Mack truck- I never know how that will go.