Well I'm for sure, not a consistent poster, but I need a space to every once in a while put my thoughts out there. I'm allowing it to be public, because I often feel that that when people keep experiences quiet or untold, there are often others who struggle with similar things and feel all alone. There's one thing I generally dislike, being alone.
I always thought myself an introvert, but I've discovered as I age, I was just a shy extrovert. With ADHD I am impulsive and have anxiety about how people perceive me. I desperately want to be liked and respected. And often I get in my own way, and I think that caused the shy part as I was younger.
I digress. So Updates. I'll start with the sunny side and move to the "dark" side.
The '22-23 School year (Even not officially in a teaching roll, I live my life by the teaching calendar), I believed myself to be taking a year off. But my habit of taking on too many things landed me in a variety of new opportunities. I signed Gerald up for a swim team (which he did not love) and met another parent there. This parent had recently retired from Public Education and moved to Private education and once she discovered my experiences and skills in Science Education she implored me to take a long term Maternity Sub role at my Alma Mater, funny enough, following the footsteps of my retired chem teacher dad. Despite objections, I consented to a conversations with the Head of upper school, who had been my best history teacher in HS. He called me with in the hour of leaving swim lessons. After some heart searching and candid discussion with Mr. S, I agreed to think on it. Over the course of the weekend he reached out to tell me whatever decision I made about the long term Chem sub, he wanted to support me in my journey no matter what. After past experiences with intimidating and less than supportive principals at my prior school, I was shocked that I was being given such a kindness and strong pastoral care before even being an employee. Something that I felt lacking at the christian school I had worked at before. I chose to take the chance, knowing that if I was truly over teaching, 8 weeks wouldn't kill me. OMG. Game changer. I had so much fun that I regretted not applying for the job. Teaching is so engrained into my being. I built strong relationships with the 10th graders, and promptly moved on to a paternity sub in 7th grade Math. After a month with them I had grown attached too. I bopped around from sub job to sub job and by Feb, I was ready to apply back in schools. After employment season (I had really had very little luck in a non education setting applications), I interviewed at a number of schools and was offered a job at two in the same day. It felt wonderful being wanted! I took the job at my Alma Mater, despite the public school offering having a hire pay and better benefit. I took the safe job because I knew I had soooo much love and support and respect and I knew that's the care I needed and I know the Dean of Curriculum and Instruction will push me and fight for me and knows I will do right by the students. Knowing that is what I felt I needed knowing the direction of my personal health challenges moving forward. I am super excited to teach new stuff and work with amazing people.
With that, it leads me into the "darker" side of my changes and growth. Several things happened right in a row for me that triggered some extra anxiety and fear.
The background:
From my understanding of my past, I was born with multiple birth defects, some seen, some unseen for YEARS. In the first two years of life, I underwent 22 different surgeries. While I have only one core memory of this time (screaming bloody murder at an ultrasound and straining for my mom who they made sit outside), I can relay the generalizations from my parents.
I was born in 1984. At that time, mother's ultrasounds were extraordinarily rare and my mom's pregnancy seemed to be fine, so no ultrasounds were taken. When I was born, they typically clean out the esophagus to prepare for feeding. At that time, the tube did a 180 and returned to my mouth, indicating a complication with my esophagus. At that point I was raced to surgery, I had a tracheoesophageal fistula: (Atresia... I believe)
So they set about to fix it by cutting and stretching it to the stomach. Along the way they noticed a number of other concerning issues, not sure the order or progression of these findings, but at some point they re-implanted my ureters, reconstructed my vaginal cavity, found that urine was pooling in my vagina so they pulled down the urethra to allow better flow, tied my aorta to my rib cage to stop it from pushing on my now scarred esophagus and trachea ( so maybe I had Atresia with distal fistula?). That was done to stop it from collapsing my small trachea and stopping me from breathing regularly. (Fun fact, a man that was part of the Olivette EMT team that saved my life many a time, has re-appeared in my life and is a frequent visitor and friend of my parents... pretty cool). Post surgeries, my urology doctor that was not a pediatric had started seeing my parents as frequent fliers in his office due to on going UTI's and other complications that I was having at a young age. The story goes, due to repeated visits and extraordinary concerns by my parents, and probably a lack of pediatric knowledge??? my dad (who NEVER get's mad) lost his cool in the doctors office over their lack of response to my pain. They reported my unwillingness to use the restroom was a fault of being a terrible two and we were asked to leave the practice (if Dad does get mad, he yells but is NEVER aggressive, just passionate). Till I was 7, 2nd grade, we just relied on the pediatrician to handle the UTIs I continued to have.
By second grade, my mom was frustrated with the consistent UTIs and the apparent distention of my abdomen and her gut told her something wasn't right. I was still wetting the bed, and wetting my pants at school and lacked the sense of needing to use the bathroom. So she sought a well-known pediatric urologist and a whole new journey began. Finding Dr. S. at Cardinal Glennon was a game changer. Turns out, the procedure to pull down my urethra caused scar tissue to form somewhere in the urethra and I had not properly voided my bladder in 5+ years. After many tests and explorations and referral to a Kidney specialist, we discovered more disappointing news. Apparently, not emptying your bladder for 5+ years will cause some damage. My urine had reflexed into my kidneys causing over 50% damage on both sides. I was now at the age of 7 operating a 45% function in each kidney, with both being double the size of a normal kidney (hence the distended abdomen). After continued exploration, it was determined that additional surgery would be more harm than good. In an attempt to remove scar tissue, it would be possible that more scar tissue would form re-creating a blockage. So we settled on different solutions, utilizing catheters to use the restroom, always. It was a learning curve for me with a lot of support from my mom. Eventually, I learned to manage the catheterizations on my own. And for years we self-sterilized the catheters in the microwave. After several series of increased infections at some point, we switched to just purchasing 240 catheters a month.
At the start of this new journey, I was told that a Kidney transplant would be inevitable before I reached adolescence. At the age of 12, my kidneys had remained stable and the transplant age guess was pushed back to potentially when I was 30, but I was never going to be strong enough to have children.
Well the silver lining of this, is I bucked both the hypotheses set for me. I continued to have 45% function till I was 35 AND became pregnant and carried my oldest goober boy close to full term (34 weeks) and had him right before I turned 30. During all of this process though I did discover I had a septum down my uterus (additional birth defect, not found till I was in my late 20s) leaving my boy a "condo" instead of a "mansion" (as my fetal medicine specialist called it) to grow in, which was the reason he didn't keep squatting in utero to full term. The moral of that story, believe, take care of yourself the best you can, and medical recommendations change and your body surprises you.
Sadly, the good luck couldn't last forever. A series of events occurred and I'm not sure if any one of them actually triggered a decline, or my Kidneys just said "uncle."
Events:
Stressful, overwhelming, and exausting work environment
COVID Shuts down the World
Work get's even more stressful.
I turn 35 (apparently shit starts going down when you hit 35??)
Whether this triggered the decline, I'll never truly know, but suddenly my GFR (Glomerular Filtration Rate... aka rate at which the tiny filters in your kidneys function) dropped like a tank. For a while, I have now been teetering between 21-24% function. I got them to go up a little bit, but last summer, I went through a continuous rotation of UTIs, unable to kill the bacteria. After 8-9 rounds of back-to-back infections, my urologist referred me to a super-specialist at Big Barnes and decided to stop antibiotic courses to prevent superbug growth. Then to make matters worse, the Nephrologist (kidney doc) started truly discussing the possibility of moving toward the planning stages. So that brings us up to today. Life is a challenge, my Urine never cleared, it always looks like an infection and smells something awful. And now my numbers are refusing to climb back up, just slowly lower. So prep begins.
I'm totally freaked out, and riddled with anxiety. I have days my kidneys just ache, the right side so much it hurts to lay on that side. I met with an extra specialist who studies more complicated conditions and it was nice to hear his insight. But this week I started my testing regimen to help me forward toward dialysis or transplant. I always knew it was coming, but managed to distract myself or worry about it later, but the time is so close. I'm finding myself exhausted, depleted, and feeling some serious nausea and fatigue.
Alas, my fingers are crossed that all goes well.
That's All I have for now. updates on my day of fun later!
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