Tag: truth

  • I hate being sick…

    I found this quote (pasted below) and realized it said so much of what I feel on a regular basis. Those, thankfully rare moments that I really consider where I am in life. Having chronic illnesses means always finding a balance between obsessing about getting better and pretending your life is normal or in other words, embracing the reality versus ignoring the facts. Most of the time this is for self preservation; nobody, including myself wants to hear about the struggles all the time. I often tell people that my full-time job is taking care of my health and that isn’t really a joke.

    When you couple chronic illness with invisible illness, and add in rare diseases into the mix, you are faced with a ongoing problem of being believed, but almost anyone, after all no one should or could have all of this. My list is crazy(simpliefied): Primary Immune Deficiency, Asthma/COPD, IIH, RA, POTS, Adrenal Insufficiency, Type 2 Diabetes, Hashimoto’s Disease, Migraines, anemia, SVT, pituitary tumor, kidney stones, urinary issues, back/neck/hip arthritis, endometriosis/ovarian cysts(now a non-issue due to recent hysterectomy), severe allergies, history of PE and DVT and depression/anxiety. I am always aware and thankful for the other scary stuff that I have been diagnosed with and then proven otherwise like MS and Myasthenia gravis. I am well over 50+ surgeries and have been plagued with orthopedic issues from a bad car accident and stupid bad luck, along with years of playing sports. My medication list is ridiculous and it gets slapped with “Poly-pharmacy” all the time, something that the good providers see as a potential problem but not sure how to handle it. I swallow pills and give myself injections like its my job!

    I write this today, not for pity or attention, but mostly for my own good and hopefully someone else will feel less alone in their own medical journey. I do not expect my family, friends, or my “tribe” to fully comprehend all of this, as I barely do. I do hope that those who surround me with love give me grace to be imperfect sometimes. In turn, I vow to keep fighting and giving myself this same grace. I will continue to “Not let the hard days win” as I have won !00% of my battles against bad days! I will continue to search for new treatments and support, my biggest adventure in this area is attempting to get a service dog for mobility, assistance, medical alert, and of course companionship; all of this would be a total game- changer.

  • 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!