This is my one long article. It whooshes over everything. don’t feel you need to read it all, but I know it will speak to someone.
Who is this crazy woman writing this blog about chronic illness recovery? Why is she bothering to do this? What does she know about it anyway? Well, I know a lot about chronic illness. If I were to go through my entire life of illness, I would have to go back to my childhood where I was sick from a young age. I’m not by any means complaining, but if you are interested in my story, here it is. As a young girl in elementary school I missed most of 2nd grade due to tonsils so bad that doctors would not put me under to take them out. So, I stayed home with fever and antibiotics for months until I was well enough to have them out. By then, as you can imagine my gut biome was ravaged and I was full of candida. No one recognized that at the time.
Eventually I ended up getting Tularemia, also known in the old days as glandular fever, or rabbit fever. I had the glandular form and almost died before an old doctor figured out what it was. Common early signs of glandular tularemia are high fever, chills, swollen glands, headache and extreme fatigue. I did not have a skin ulceration, which made diagnosis more difficult. I had the exhaustion and weight loss on top of it. I remember also having sore throat, diarrhea, and vomiting as well..so Im not sure which form I had. To learn more about Tularemia: https://www.columbia-lyme.org/tularemia
I grew up on a small farm in central Florida when it was still mostly orange groves, strawberry and watermelon fields, and cattle. It was the end of the small family farm when conglomerate corporate farms were happily gobbling up family farmers. I always dreamed of the freedom of riding horses, and I finally talked dad into allowing it. I rode trails, barrels, and competitions through 4H and it was a great outlet for a while…until a spooked horse threw me and I luckily only got a broken collar bone. I don’t remember it to this day, I only remember waking up in the tall grass with everyone peering down at me.
Once elementary school was over, my father had a brief and very expensive battle with bladder cancer. It had already metastasized, so it was a bleak and painful outlook. Looking back at that time, I was a melancholy little girl who didn’t feel very good myself and was quiet and was told I had the eyes of an “old soul”. By that time, I was an old soul.
Over the next decade or so, looking back now, I went through high school and college with untreated Lyme and co-infections. I put myself through college with some help from my mom, but ended up leaving before graduate school to take out a loan so my mom wouldn’t lose her home. I almost wrote that it was a tough time, but it applies to pretty much everything here, so I’ll let that rest. At 29 with my psychology degree I was teaching and paying off the loan at about 21% on my moms house. I had urgent guidance that I had cancer. Out of nowhere, it just came. I then went to my doctor and exaggerated some digestion issues I had for some time. I went through quiet a few doctors until I found one who would refer me to a gastroenterologist rock star to get scoped. A couple of weeks later I was in his office and he was about to dismiss me as all the other middle aged male doctors had done, and then I looked at him and said “humor me and I’ll get out of your hair”. He continued with his NY convivial joking disposition until he quickly went silent. He had me in his OR within the week saving my life.
After a full 12 hours of “bowel evacuation”, it was colonoscopy time…which included surgery since he had already seen issues in his office. When I woke up from an extra-long colonoscopy / colorectal surgery, I was still slowly coming out of anesthesia when my mom walked into the community recovery room where myself and 15 or so others were recovering from the pleasure of being inflated and examined from the inside out. She was white as a sheet and looked as if she were going to lose her footing. At that moment I thought, through my groggy eyes, that I had a full colostomy bag or was ridden with cancer. She rambles on to me, not realizing I was still coming out of my twilight. I remember certain phrases like “he said it was a breath away” and “we caught it in the nick of time” and “he didn’t have to remove any of your bowels”. I started to realize I had been saved. Fast forward to a lot of farting and stomach pains (I had been inflated after all) and wise cracks with the nurses because it turns out that I am “hilarious” coming out of anesthesia. “Why don’t they just scent the air you pump into everyone and then this room would be a potpourri to the senses.” Like I said, I’m freakin hilarious. As I get as dressed as possible and am helped out to the car, I turn to look back at the bed where I learned about my miracle and saw the sign. My doctors name (Frank) over my maiden name (Kovach), and I realized why my mothers face had been white. My fathers name was Frank Kovach.
With my newfound realization that my life had been saved, I knew my life had to change. I was here for a reason. I had things to accomplish. I finally got my mom to sell her house and property and get myself out from under the mortgage. I went back to teaching for a while, got my real estate license, and pursued my love of art all looking for what it was I was missing. Why was I spared? I was literally told I had cancer and I was right, with no reason for doctors to think I was high risk. I was fit and healthy at this point in my life. I jogged, ate healthy, didn’t smoke, and drank occasionally. I then met my husband at the worst possible time, in the middle of clearing out my moms home of de-scades of belongings…something which she did not lift a finger to do. it was a very stressful time and my bucket was completely full. I had no time for relationship nonsense, nor any energy to discuss the he-said / she-said seesaw affair of the heart. I was apparently a woman who was very difficult to understand at the time. My straight shooting made no sense.
Before I knew it we were getting married, going into a new home, and within a couple of years our first child was coming. My health crashed during pregnancy. I got a horrible “spider” bite on my shin, learned later we had mold in outhouse, and only learned later that I had Lyme. It was years later before all of this was addressed because doctors really don’t know much, at the practical practice level, about Lyme, mold, and CIRS. I gained a huge amount of weight during pregnancy (much of which was water). I now know that I get edema and weight gain when Im exposed to mold. Im floating away from the chocolate factory, or Hagred cast his piggy spell on me. It came on fast and my feet went up 3 sizes. Looking back now after another episode of this after mold exposure, it is my classic sign along with full body hives.
Once our miracle baby boy came, I knew why I had been saved…or I thought I knew. It didn’t matter what else in the world I did, I made this miracle boy. He was colicky as you can imagine. He was bouncing around in my belly that had enough water for triplets. Mothers of women who had triplets stopped me from 6 months on thinking I was giving birth to triplets any day. Everyone looked at me my entire trimester as if I were going to drop down a litter at any moment. I had blimped up so fast, I could barely wobble along. All these pregnant women with their cute teensy bellies just pissed me off. Complaining about their sore feel, come on…they had nothing on me. I had bellyzilla with just one baby in it. I was tired and sick, and so was my baby, yet no one would admit it or could figure it out. The system wasn’t looking for us, we were the outliers in an equation with parameters set to tuck the outliers like me discreetly out of view. Our problems were invisible. She is just a stressed first time mommy. She obviously doesn’t have a good diet. Maybe she needs therapy. Of course I need therapy, the medical establishment has failed me, for the most part, and now it is failing my baby.
Fast forward a few years, we move to Kentucky for hubbys job. Our son developed P.A.N.D.A.S. which evolves into P.A.N.S. we find over years that we both in fact had Lyme on top of the mold exposure. To make things even more dangerous, we have another severe mold issue in the home in Kentucky but it is silently in the basement wall and floor under the carpeting so we didn’t even know it was there. At 12, he could barely walk stumbling with encephalitis type symptoms. Was it a PANS flare? No, it turned out to be mold. I had finally gotten proper treatment and testing for my Lyme and learned about herbs and treatments to go along with the antibiotics to help detox the system, kill the pathogens, and reduce inflammation. Until mold hit, then we all were crumbling. A doctor in Cincinnati (Dr. Nathan Morris, Good Medicine) who had been successfully treating my Lyme said to my quickly declining state, “Are you sure you don’t have mold?” My heart sank, because I felt it in my gut that he was right. I had suspected because I was, after all, the queen on online research. It was the same knowing I had had at 29 that saved my life once. I was relentless and we tore the place apart until we found the source of the leak. A micro-leak that sprayed an infitecimal amount of water against the outer wall, it then ran down under the carpet padding and was quickly sucked up into furniture. as we tore the place apart it had migrated everywhere. What would we do now? We ended up moving to a hotel and had to pull a second mortgage. We gutted the house to the rafters, and some sections of rafters were removed. I’ll save the remediation debacle for another article, because it could be a book in itself. Fast forward to COVID and everyone else world falls apart. Ours was already broken, so not much really changed for us…the world was just catching up.