Mast Cell Disease, the cause of all

Mast Cell Disease

I have Mast Cell Activation Syndrome. That means many different things and is really different for everyone who has the disease. I will tell you my personal experience, while I know that many others have completely different triggers and life modifications than I.

I had bad allergies as a kid. I was crushed when I had to get rid of my stuffed animals because they flared my allergies…that’s all we thought it was. Allergies. I had food limitations and we didn’t really call them allergies, we just knew there were things that if I ate them I would get sick. As I grew I broke a lot of bones, was sick all the time and eventually had a 15lb tumor on my ovary. I didn’t know life to be any different and so I can honestly look back and say my childhood was wonderful. I was just sickly

I began losing consciousness when I was 18. I would just faint, like a goat, randomly. They diagnosed me with POTS and I went on with life. I just kept getting sicker. I began having more and more reactions to food, drinks and the world around me. It is now to the point where I can eat 4 foods safely, Chicken breast, potatoes, green beans (cooked) and sometimes green bananas. That’s it. Anything else sends me into anaphylaxis.

Mast cell disease is a mystery. I not only have these crazy cells that respond incorrectly to different triggers and send off too many chemicals but I also have too many of them in my body! I have too many mast cells in my colon, had too many of them in my uterus which was partially the reason I had a hysterectomy at the age of 25 and now will never be a mother. My mast cells are chaotic and affect every part of my body from my head to my toes.

Mast cell disease changes everyday. Some days I can handle going in public and if a woman or man has too much cologne on, I can breathe through my shirt and be fine, other times, I go into a reaction from the simple scent of Target. (Yes, each store has a distinct smell!)

For me, cold air is the worst, when I go outside in Minnesota winter my throat and lungs seize up. I turn bright red and have to take mass Benadryl, prednisone and mast cell stabilizing medications to keep me living. I take 200mg of Benadryl about 6 times a day and I am on between 40-80mg of prednisone daily. Both of those are crazy high doses but they’re what my body needs to function.

I am homebound. I never know when I am going to go into anaphylaxis or have a reaction. All reactions are not just breathing, sometimes I can all the sudden have to empty the contents of both my stomach and my colon at the same time. Sometimes I get a horrible headache and other times I just get heart palpitations and tachycardia.

In the last week I have gone through 8 epi pens. I have giant bruises on my thighs from the needles because another part of my mast cell disease is that my body has high heparin levels. My blood is thin. It doesn’t clot like a regular human. I bleed.

Mast cell disease is being allergic to the world around you AND allergic to your own cells at the same damn time. Mast cell disease is never knowing exactly when crisis will occur but you’re always prepared because you know it can happen at anytime for any reason.

Mast cell disease is like being an infant trapped in an adult body. I have to be monitored 24hours a day. I stop breathing, I pass out and I cannot eat food. Mast cell disease is unknown, disabling and exhausting.

Mast cell disease is hell. Someday medicine will catch up to my body and I will live like a normal person, which is my dream. Until then, you can find me under my heated blanket, stuck in bed, eating plain chicken.