Fractured, Not Broken

There was a time when I believed I was irreparably broken but that was just another lie the human experience throws up as a test to see if you’re stupid enough to fall for it. I did, but looking back it’s easy to see why I felt that way.

It took four decades of searching for answers to understand what was wrong with me and it was nearly too late when I did finally get my diagnosis. I was almost completely bedridden, right at a time when my young adult children were starting their lives and needed me to help them make the transition. I could barely transition myself from the bed to the bathroom and back.

I wasn’t the first one in the family to become bedridden early in life. My grandmother on my dad’s side spent the last twenty years of her life in bed, mostly, and my brother spent the last decade or so of his bedridden as well before he finally died after years of absolute hell.

Neither had a definitive diagnosis for what ailed them, either. I saw myself heading into their fate and had all but given up hope when I landed in the office of my local immunologist. He didn’t just listen, he really seemed engrossed in my tale of woe and despair and seemed to understand why I had also developed a strong, almost pathological fear of doctors over the years. I couldn’t help it, I had been to so many and my first memories were of them trying to hold me down in an MRI to get a brain scan because my seizures were so bad they needed to see what might be causing them.

In between, I was given every test imaginable and injected, drugged, poked, you name it in an attempt to treat me with no answers as to why I was so sick in so many different systems in such random ways. My symptoms kept mutating, too, as I got older, and by the time I landed at the clinic twenty miles from my house, I was almost as equally allergic as I was inflamed. The allergy symptoms had escalated after three wasp stings within a year, each one worse than the last until I thought I was dying the last time.

The anaphylaxis was new, but the painful inflammation from head to toe wasn’t and it was getting worse. Like my older brother, I went from fit and somewhat healthy to crippled almost overnight and my mental health spiraled out of control, too. I secretly hoped one time I would anaphylax so bad, maybe in the hot shower since I had become “allergic” to that, too, and just fucking die already.

I had already given up everything by that point so why not? I was allergic to heat, pollen, most foods, stress, altitudes, sunlight, most every chemical fragrance, prescription drugs (mostly the fillers and additives in the pills), You name it. Socks too tight? Hives on my calves so bad I’d scratch until my skin bled. Pillow case too scratchy? I’d wake up covered in big, itchy welts on my face.

Worse, it was getting worse and more and more things were triggering me as the years passed. I felt doomed to die like so many, completely hopeless, alone and misunderstood. Even I had a hard time believing it was true and wondered if I was actually somehow “thinking myself sick” or faking it like so many people were saying.

Either way, I was saved that fateful day by Dr. P, as a last minute thought as I was heading out the door, defeated yet again after my latest round of tests which came back “normal”.

“Have you ever been tested for mast cell disease?” he asked.

Of course I had no idea because my childhood medical records were somewhere in the Naval archives and I hadn’t been inclined to go through the process to get them, but as far as I knew, no. I had never heard of a mast cell and probably would have remembered discussing it with a doctor at some point.

To make a long story short, it changed my life and I am now 80% better than I was when I left his office that day, although I do have some bad reactions still and am functionally disabled when it comes to keeping a job. Still, I am able to maintain a life and a very good one despite it having to be a very disciplined life that demands I stick to a strict diet and use mast cell stabilizing medicines religiously.

Once I stabilized my symptoms, which were many, and got the inflammation especially under control, I could think clearly and get a handle on my out of control emotions so I could focus on healing from my childhood trauma, which again, if you haven’t read about that please check out my last post on ACEs testing and see where I rank (hint: I scored a 9 out of 10).

It sounds unbelievable, but for me getting a handle on my health problems allowed me to see that I wasn’t broken at all. I simply was fractured and needed some repairs. In my case, very specific ones since I have a very specific disease (MCAS).

And the reality is, I’m not cured. I am literally one or two doses of meds away from being right back in mast cell hell, which is nowhere anyone wants to be!

Which reminds me. I bought the domain mastcellhell.com and might start blogging there just about living with mast cell disease. I kind of miss my old website which I had to give up when COVID struck, and I do need a place to vent specifically about that without cluttering up this blog. I like to keep specific topics separate, like the blog I started to keep just for mushing and the other one I do keep up for homesteading/prepping. Different audiences need different blogs, right?

I think so.

So I’ll consider that and in the meantime, I am taking my pack of sled doggies for a nice long run this afternoon. We can all use the fresh air. 🙂