It took years of trial and error to get it all right, to figure it all out.

Like many other patients, it takes YEARS to diagnose systemic chronic illnesses. The hunt for all the answers didn’t come easy, and it seemed like it all came on at once, feeding this information to me like you would rice to a mouse. Little did we know at the time, I was living with part of it, without my knowledge for nearly all my life.

The mold started growing in my house in 2013-2014 after the tornado hit our house. So the exposure to the mold didn’t exasperate until 2014. However, in 2013 I started having GI issues. It wasn’t until 2016 before the swelling started. I was having various issues with pain in my neck, my back, my arms. I was cake decorating at night as my family slept. I chalked it up to getting less sleep, and aging, like arthritis type symptoms. I would lay down or take a break or nap when pain got to be too much, depending on what my schedule allowed of course.

Throughout the process of getting everything ironed out, the more we realized my final diagnosis of Mast Cell Activation Syndrome, was very much so, the ORIGINAL diagnosis I had, that we are thinking may have been a birth given ailment. Why does my practitioner and I say that? I would have EXAGERRATED symptoms for things such as rashes and bug bites, sometimes sending me to the hospital as an infant, and perplexed my poor parents.

With pregnancy, when I found out on this day 23 years ago, April Fool’s Day, it was a crash course into going from my everyday clothes to pregnancy clothes in less than 2 weeks, I looked 6 months pregnant. When I discovered “something was amiss” that day, I had broken out in hives after eating a granola bar, a brand and flavor that I had eaten a bazillion times before. These hives were huge and white and fluffy going all up my right arm. I thought it was the granola bar, now I realize it was most likely the pregnancy. Even called my cousin on my mother’s side about my hives, and she said she had broken out in hives when she found out she was pregnant, so take a test, so I did.

Honestly, my body acted like it was allergic to the pregnancy. I was 186 lbs when I discovered I was pregnant, and ended at 256 lbs when I gave birth. In less than 2 weeks at my follow up appointment I was already back to my prepregnancy weight. Explain that one. During the c-section, I had almost died twice, my heart had stopped, and then I stopped breathing, my anesthesiologist bill was $25,000 and that was 23 years ago. My response to the narcotics was like an overdose, over exaggerated responses, and I’m still allergic to narcotics to this day.

I can actually pinpoint many other times that MCAS could explain the reactions to various illnesses that I have experienced throughout my life. So it was the first ailment, but the last to be diagnosed. First it was, your just full of shit, so I went through three months of human Drain-o, with no probiotics, that gave me lovely SIBO (Small Intestine Bacterial Overgrowth), which once we got rid of that mess (it nearly took a full two years), I had already had all kinds of other things going haywire.

All the sudden my ovaries had started popping cysts like crazy. Even crazier than that, although the GI infection was gone, I was still SWOLLEN. I still looked pregnant. That’s when the gynecologist had stumbled upon the fact that I had fibroids in my uterus and it had expanded to seven times it’s size. So, this required a hysterectomy. During the exploration and testing of prepping me for that surgery, is when they did the cystoscopy to discover I had Interstitial Cystitis of the bladder. The hysterectomy had confirmed everything we already knew, Polycystic Ovarian Syndrome, Endometriosis, Fibroids. I never tried to have another biological child after the first one almost killed me, so by the age of 40, I was set in my ways that this was not even an option.

I still was miserable, I was more lightweight, but the pain was still overwhelming, and I was losing functions and having seizures. My hands stopped working, one day, I lost the ability to use my left leg, none of it made sense, but some of that was the direct result of my being exposed to the toxic mold in my house, this in turn sent me to a neurologist.

While waiting for the Neurologist to finally get to see me, I did happen to manage to get myself into Cleveland Clinic, to a Rheumatologist, that was confirmed that I had Fibromyalgia while I was there. Neat, add that to the list of crazy.

The Neurologist did some testing and verified I receive 10x the pain signals that a normal human does. In fact, I was instructed I wasn’t supposed to be in that much pain everyday, that not everyone experiences pain at this threshold. I was stunned. There’s a baseline? There’s people out there that wake up and just feel good in their skin? That’s a possibility? I was stupefied honestly.

So an MRI was performed, and it was discovered that I’m missing a substantial amount of white matter, and I was displaying all the signs and symptoms of dementia, and then I was scheduled to see a psychiatrist for dementia evaluation. There was my fate.

Once I ended up in the hospital with a yeast overgrowth, and the Dr funneled in antifungals through that IV, I regained my functions in my body, and my brain. I walked out of the hospital 100% more a person than I went in and had been in nearly 3 years. I went home with the suspicion that after a yeast overgrowth that bad, that it was destroying my brain, there HAD to be mold somewhere in my house, so I tore a wall open in my garage and found it. Had it tested, and there was the stacchybotrys, trying to kill me.

At that moment my practitioner and I had experienced a medical journey like no other patient and physician had, my file is so large it doesn’t even fit in a binder. (I’ve shortened a few things out of this journey) because I had a few run ins with moldy buildings prior to that but hadn’t made the connection, until I left that hospital, that there was actual an issue in my own home.

So last but not least, I was still displaying symptoms of what seemed to be Lyme and I was tested for it, and I was only a few “bars” of DNA or biomarkers away from actually testing positive in which some practitioners use as an indicator for Mast Cell Activation Syndrome. Now MCAS is still fairly new, don’t get me wrong, it’s been around probably for forever, but as far as research discovery, treatments, we are in the first 20 years, it’s going to take a while for refinement in treatment and diagnosis. So the practitioner and I did what was best, treated for Lyme anyway, and immediately I started digging into treating the Mast Cell Activation Syndrome on my own.

I will eventually have dementia, that will come down the pipeline in 20 more years unless I miraculously start growing my brain cells back. You however, had better BET as soon as I had the ability to focus and pay attention, I haven’t stopped researching my medical conditions, my charts and all the things that have to do with every diagnosis I have received and probably will until my brain stops me again. So that is where I am at! If you read this entire blog entry to the finale, I applaud you. It was HARD to live through, and it’s most definitely hard to read someone babble about it all. Best part of it is, I live entirely this day with all these chronic illnesses with no prescription assistance at the moment, a few supplements and over the counters. I’m damn proud of that, and I will share that to anyone who is willing to hear it. ❤ Much Love!