There are many aspects of this disease that baffle those around me. 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. Mast cell disease is very different from this and much more complex. It isn’t something that is cureable, there are treatments available, but nothing is gauranteed.
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.
It’s as though my whole body is allergic to everything. I hive, I flush, I end up with a little less then fifty of Mast Cell disease symptoms. Here are some photos of what it looks like. These are all of me.
Different parts of my face can swell and turn bright red, other times my skin appears scaly like after touching something this is a contact allergy. Please note I am not wearing make up in any of these photos, my lips turn bright red sometimes during a reaction, they itch, and eventually swell. Other times they swell up huge along with my nose without changing colour.
Mast Cell disease can seem at times like it runs my life. Flares happen daily, I can never tell which kind of symptoms I will experience. My symptoms range from Vertigo, vomiting, migraine, and abdominal pain/swelling are some of my hated symptoms. A more complex symptom list I experience due to mast cell disease, chest pains, vomiting, diarrhea, weakness, abdominal pains, rashes, feeling to hot, or too cold chills, palpitations, migraines, fever, tachycardia, itching, joint/bone pain, cognitive impairment, skin on fire, numbness and tingling, anxiety, weight loss, sinus problems, runny nose, mouth sores, ringing in ears, flushing, sweats, rashes that last months, passing out, extreme fatigue, itchy mouth/throat, sore throat, and lowered body temp. These symptoms and all the other symptoms from mast cell disease are debilitating. Many days I am unable to leave the house due to being over reactive to everything, I have a vog mask and RZ masks that help to protect me from some smells.
My epipen is something I keep on me all times. Mast cell diseases are different for everyone some people only have a few triggers, others have many.
How to better your quality of life living with mast cell disease. First of all avoid triggers, sometimes this can be hard to pinpoint because it may seem something we are fine with end up reacting to the next day. It’s important to not cut everything out, at least in my experience, as this made me super dehydrated, malnourished and cranky (at least this is what I was told by my doctor).
For me smells really impact my quality of life, once I realized this and started wearing my mask out my sinus problems improved. Who would have thought that mast cell disease was giving me chronic sinus infections. This is actually something mentioned on the Mastocytosis Canada page. It is a real and not fun symptom of mast cell disease. Not that any of them are fun. Having an infection can make you feel worse than you need to. I am beyond grateful for a dear friend of mine who gave me my first mask, this mask is something that has saved me time and time again from smells invading my body. Musk is one of the worst smells for me, it makes me sick, I end up with a butterfly rash on my face.
Do things you love, make sure to enjoy the simplest things because you matter. Your happiness and your out look are key. There may not currently be a cure for Mastocytosis, idiopathic anaphylaxis, and mast cell activation syndrome. There is always hope for a better tomorrow. One where there is time to live life as funny as you are able. Living happy is a perception it’s not owning the most things, or traveling, it is how you express gratitude. It is truly focusing on the good, not ignoring the bad, but knowing there is balance in life. To get to any form of acceptance one must realize the journey brings both good and bad.
Not everyone will understand your illness. The comments of “you look fine,” will always make my skin crawl. Invisible illness like mast cell need to be talked about. People living with mast cell disease should share their stories in hopes of opening other people’s lives. If we just complain about there being no awareness and we don’t aim to raise awareness, nothing will change. Give your illness a voice for you, and for others like you. You got this. You are not alone.
You can find me on the following social media @annaweds on instagram @annawerrun on twitter and find me on Facebook https://www.facebook.com/Annawerrun2/?ref=settings
Check out my YouTube channel here https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A
I remain hopeful always.