The Years of Living Too Dangerously

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 It started simply. I was born, I was born in the shadow of the main Exxon refinery in South Louisiana and was diagnosed with severe asthma. I don't remember a time when I wasn't getting inhalers and drugs. Eventually I outgrew it when I reached my teens. Just about the same time I started smoking marijuana at quantities more appropriate for a Rastafarian or your average Grateful Dead fan. How I made it through my studies I will never know, made pretty decent grades back then too.

Which started a blissful 20 year stretch with no asthma. I thought I'd beaten the final boss. Won the gold ring. Got boinked on the head by the lucky flying pickle of fate. Right up until my last baby was a year old. Mr. Asthma came roaring back suddenly. I didn't get it, it seemed beyond understanding. I didn't smoke. I hadn't fooled with illicit drugs or the Devil's Lettuce in most of those years. Heck, I didn't drink more than the occasional glass of wine, or eggnog during the holidays.  

But no matter. It wasn't anywhere near as bad, it came, it went. Showed up just to annoy me when the allergies were bad. No matter, I soldiered on, raised my kids, worked my jobs and always had the damn inhaler in my purse just in case. 

It wasn't until three or four years post-hysterectomy in my forties that things changed again. By that time I was working at a medical clinic, a large one with multiple doctors. Odd things started to happen. If anyone used certain office supplies with a heavy chemical smell, someone smoked around me, or a patient strolled in smelling like cheap cologne I started wheezing hard. The inhaler didn't touch it. They switched me to a nebulizer. It just kept getting worse and worse until one day a coworker cleaned her desk and I had my first bout of anaphylaxis in the office. I ended up outside upside down in the bushes throwing up. Had no idea what hit me. Couldn't breathe but could vomit. Go figure.

It continued on for a spate of months with my reactions getting increasingly worse. I started having reactions so severe I had to start carrying an epipen. Missed work more and more. On my last day at the clinic the copier technician popped the lid on that bad boy and started using compressed air on it. I went into the worst bout yet, again outside upside down in the bushes throwing up with the added bonus of that damned epipen hanging out of my leg. Coworkers loaded me into the clinic wheelchair and wheeled me across the parking lot to the ER. I got treatment, but they didn't release me until much later. Husband came to get me.

This was starting to be a freaking routine thing with me. Not the first time I went to the ER with the epipen in my leg blubbering like a baby only to have a family member fetch me later. 

When I got back to the clinic the last day I was fired. Why? 'Being dramatic.' The head doctor who owned the clinic told my husband that I was insane, that it wasn't even possible to be that allergic to random things. Always thought he was a crappy doctor who was merely running a pill mill back before anyone considered that oxycontin was addictive. Later the Feds popped him for that very thing.

After visiting my family doctor so many times he finally referred me to the town pulmonologist. For the first time I knew I wasn't nuts, that whatever I had was real. Turns out my new doctor, Dr. Y., had seen and treated mastocytosis and mcas before. He said he suspected I had it on that first visit. Since at that time there was no actual test for it he tried many different things and drugs. Once he saw how incredibly out of wack my IgE levels were he said I had it. It was at the point where very few of the traditional drugs you treat asthma and upper respiratory ailments with worked on me. I only got small relief from cromulyn and was put on chemo, multiple low level rounds, before I was finally approved by my insurance for biologic medicines.

I got almost 9 years of partial relief from one of the biologics along with a laundry basket of other drugs.

I consider myself very fortunate to get that very quick diagnosis followed by more confirmation via the removal of a small mast cell growth on my skin. Most people struggle for years, up to ten or more years, and the average life span after diagnosis is shorter than average. I got my diagnosis back in 2007. I decided to put my story of life with mast cell here to encourage others. It's possible to live and live well while having this chronic condition. It's all about having a plan, and sometimes it's like trying to coordinate a 3 ring circus while guzzling H1, H2 and a proton pump inhibitor at the same time.