So, I’m sitting here in my bed, not sleeping (surprise surprise), and I started thinking about this disorder. It affects EVERY SINGLE SYSTEM in my body. So I’ve been thinking of the different things that have happened in my life, and so many things are adding up. When I was 12, I did a cartwheel in my front yard and did something to my wrist. Don’t know exactly what happened, but it was sore and inflamed for weeks after it happened, actually requiring physical therapy to get it to gain the strength again. Inflammation is the leading symptom of MCAS. My joint was inflamed and didn’t have the right stabilizers to fix itself. I’ve had abnormal pap smears come back–I’ve recently found out that MCAS can cause these. I’ve had chronic mono…the MCAS kept it from remission and the two disease kind of fed each other, making me as sick as I’ve been for the past 2 1/2 years. It’s insane that this disorder is so powerful, yet nobody really knows anything about it.
Dr. Afrin was telling me that the disorder tends to work in stages, often triggered by some kind of trauma, whether it be physical, mental, or even emotional. (So you hear that??? No causing stress in my life!!!) I can tell you the events that caused everything. I’ve had this disorder my entire life, and I’ve had symptoms my entire life. I was constantly sick as a child (and even as an adult) and usually needed at least 2 or 3 rounds of antibiotics to kick whatever illness I was fighting at the time. This is all completely normal for an MCAS patient. And it held steady for a while–until I turned 13. When I was 13, I broke my finger, broke my arm, tore up the ligaments in my knee, had to have surgery on said knee, Grandma moved in with us, I moved in with my brother, and then we moved houses all within a year. That’s a lot of stress on any person, let alone someone who cannot handle stress. I stared high school and marching band and less than a year after, I developed my latex sensitivity. All of that stress made my disorder jump in severity. It makes sense when you think about it! All through high school, I had to deal with those anaphylactic reactions, multiple ER visits (usually once every 4 weeks or so) and my body was exhausted. My junior year, Grandma moved out of the house. It was hard to say good-bye, because I knew that I would never see her again. I was a real Grandma’s girl, so it was especially hard. 6 months to the day, we held her funeral. About a month after the funeral, I developed a migraine that lasted for 7 weeks straight. I truly went from “what school am I planning on going to” to “am I even going to graduate?” and even to “omg is this a brain tumor?” It was terrifying. I missed a ton of school, I was too tired to do anything, and I could barely sit in a dark room with a tiny bit of light. It was too much pressure for my head. Little did we know that this was caused by a sinus infection in a tiny sinus right behind the eyes. This tiny sinus was so inflamed (inflammation!!!) that it was pushing on my brain, causing the reactors to send out migraine impulses. It was only with a few rounds of antibiotics that we were able to get the inflammation down. The headache itself didn’t go away for almost 4 months. There was a step up in that. Then, when I was 19, I had some surgeries that went wrong. I rejected the particular suture (PDS sutures) that my surgeon had used, and all of my incisions ripped open. I ended up having to have 7 surgeries by the end of everything. I fought a staph infection, and had something called a dystonic reaction–a reaction where you lose control of your muscles and they contort into weird and uncomfortable (and scary) ways. Another step up. That’s when I began to become sensitive to chemicals. I’ve never been able to handle bleach. It’s always caused my chest to constrict and make it hard for me to breathe. But I began to become sensitive to other chemicals as well. In 2014, I had 2 extremely severe allergic reactions within a week of each other, and then caught pneumonia. That right there was enough to cause another step up in the disease, and caused the chronic mono. Since fighting the chronic mono, I’ve become sensitive to so many different things–things I’ve never had any issue with in the past. It’s terrifying that I’m becoming so sensitive to SOO many different things–I cannot help but wonder what is going to be next? So that’s another step up.
It’s amazing how well he knows this disorder. After telling him everything he just looked at me and nodded. Fantastic man. Truly. But sitting here thinking, so many different things have begun to make sense. It’s nice to finally be able to say “oh THAT’S why my body did that way back when” instead of chalking it up to the body just being weird. It’s so nice to finally have an answer after searching my whole life. It’s nice to be understood. It’s nice to be able to say “Why do I do this? Why it’s because of this weird disorder that was really discovered about 10 years ago.”
If there are any people thinking of going to medical school, think about specializing in MCAS. Trust me–you’ll have a ton of patients, learn more than you’ll really want to know in your lifetime, but you’ll get to help all those people. The more people learn and understand about this disorder, the better it will be. All the people who don’t know what is going on with their bodies could finally have an answer. It’s my purpose to help these people…to be a voice for the millions of people who have this disorder (it’s an epidemic in the USA…probably the world) and don’t know it. To be the voice of the people who are so sick and tired of fighting with doctor after doctor who throw their hands up and say “I don’t know. I can’t help you.” That isn’t going to be acceptable anymore. I demand answers, and everyone else out there should too.
And I’m down off my soapbox. ☺
As always, all my love,