There are many aspects of this disease that baffle those around me. What are mast cells? What are you allergic to?
Mast Cells cause a reaction in your body when you have an allergy. Your mast cells attack the allergen and make you feel ill. This induces sneezing, coughing, runny nose, and other unpleasant allergy symptoms. It isn’t cut and dry, I end up vomiting, losing consciousnes, get a migraine, have abdominal pain and end up covered in hives. Mast cell diseases are not forgiving
When people ask me what I am allergic to, the answer is a long drawn out one. My body thinks I’m allergic to everything, I am not actually allergic to everything but mast cells in my body have convinced my body that I am.
Confusing? I know.
Recently I was in the hospital and I was given a glass of water. It was a glass made of plastic, I had one sip the room started spinning my blood pressure spiked crazy and I began to lose consciousness. The technicians around me seems quite concerned and extremely confused. My husband was asked repeatedly what I was allergic to and all he could say was everything. They asked my mom the same question and she agreed with my husband.
The problem with Mast cell diseases sometimes you have no idea what set you off. It could be as simple as a smell in the air someone touching you after having touched latex for example, someone putting something on your food that you didn’t tell them not to because it is what set you off. It could be as simple as a smell in the air for example laundry detergent, body wash, hand soap, or someone touching you after having touched latex , and then touched you.
I wish it was simple and easy to say that this disease will go away that my mast cell numbers will go down then I’ll stop having reactions that I’ll get better. This is not the case for me. My mast cell numbers continue to rise, the bone pain and reactions continue to get worse.
It broke my heart a little bit when I learned that I cannot be medicated for my postural orthostatic tachycardia. Many people with postural orthostatic tachycardia a different disease and pots can be medicated with beta blockers. I cannot be medicated with beta blockers. This means I will continue to lose consciousness. But that’s a whole other story. The point is the mast cell disease that I have impacts other diseases that I have.
What what I tell someone living with muscle disease? I know it’s frustrating but don’t give up I know people say that all the time but I know I mean it and I know I don’t feeding tube. I’m so reacting to food, environmental things, prescription medication, and random contact reactions. Know that you can do this. I found a friend who I love dearly she is a great support to me and has been there for me through reactions. Having a person talk to me in a flare really helps me. Also knowing that one out there knows exactly what I mean when I say I am flaring.
Thank you to my sister in Mast cell disease, you know who you are. You truly are a blessing to my life. Thank you for being there for me and increasing the joy in my life from your friendship.
I remain hopeful always.