Chronic Illness and Mast Cells

When It ALL Began

There is no specific date that I can say with certainty when my illness began, but there are exact turning points where my health took a turn for the worse. At each point in my life this happened, I never fully bounced back to my body’s former self.

As a child I was always sick. My sister and friends would catch a cold or respiratory infection and they would bounce right back. I never did. It seemed I was always sick, and always having to go to the doctor. My body did not fight off any type of infection well.   I was on medicines a lot, including Immunoglobulin shots, and it always took multiple rounds of antibiotics to treat an infection. I almost always missed more days than was allowed each school year. Thankfully, because I made good grades, my Mom was able to go before the school board to get me passed on to the next grade. Being sick a lot was just a fact of life. I knew I was different because I was sick a lot, but other than that I didn’t give it much thought.

I was around the age of 7 or 8 when I had my first weird spell. I remember standing in the kitchen, Mama was cooking and I felt really funny. My hands were shaking and I just felt sick. Something wasn’t right. I remember being scared, and my Mom seemed scared. I think she called the doctor. I don’t really remember anything else significant, if we went to the doctor, etc.

Around age 10, I was in PE class playing four square and I had a spell again, except this time I almost passed out. I remember my heart was pounding really hard and really fast and my vision faded a little. Everything sounded weird, muffled, like my head was in a bottle.   I remember my PE teacher helping me sit down, commenting to someone else I was white as a sheet, and her telling me she was going to call my Mom to come pick me up. There were other times like this when I would have “spells”, but the doctors always said nothing was wrong. I really felt no one believed me, so by middle school when I started having more episodes of my heart pounding and racing, I just thought it was normal. That it was supposed to do that.

In 8th grade I caught Mononucleosis. Now, you’ve got to understand that by this age, I had become a complete germaphobe because it seemed I caught every cold, virus, etc that was ever going around. My friends at school made fun of me because I wouldn’t share meals, drinks, chapstick, etc. Some of them thought it was really cute to try to take a sip of my drink if it was left unattended. I still till this day do not understand what the appeal is to swap spit with everyone in your clique, but anyway….During this time I was also going to an orthodontist, and many of the patients came down with mono at the same time (it was rumored). So we don’t know for sure how I caught mono, but I caught it nonetheless and I was really sick. I missed nearly 3 months of school, and dropped down to 96 pounds. I could not stay awake for anything. My Mom had trouble waking me, and she would have to force me to take a sip or bite of anything. Worse than this my neck swelled huge. It wasn’t just swollen lymph nodes, but my entire neck was swollen. At one point I had an episode of shortness of breath, and my throat felt slightly swollen. I felt like I couldn’t breath good, and it was extremely scary. I remember looking at myself in the mirror as the swelling got worse.   I think this was the first time I ever really considered my own mortality, that I might die if it got much worse. I remember walking back to my bed and laying down trying to remain calm as Mom called the doctor, and my Dad (being a paramedic) was like “Oh your fine. You’re breathing fine.” If you know anyone who works in EMS, you know typically if you still have a pulse, they say you’re fine. I can laugh at this now, but it wasn’t funny at the time. Once I was back at school I continued to have swelling off and on for several months. Friends would comment that I was swollen, and it bothered me because not only did I still feel bad, I was a typical teenager self-concious of how I looked.  I never really felt like I ever fully recovered from Mono. There has always been this lingering fatigue, life before mono and life after mono.

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