Invisible for you, Dangerous for me.

Writing this blog post proved to be more difficult than I thought it would be… but this is all part of getting out of my comfort zone and moving forward! In doing so I felt the need to make this post to fully explain, educate, and hopefully spread the word about Mast Cell Activation Syndrome. This condition is still “new” they have only had TWO medical conferences for MCAS in the United States and the first one was in 2019, so most of the time doctors and such have never heard of the condition. On top of that the triggers and symptoms are so random, weird, and uniquely tuned to each individual and reaction times vary from immediate to a day later and I haven’t even started talking about “The Histamine Bucket” which is a whole other layer… it’s a lot to process and wrap your head ahead (believe me, but you learn quickly when your stomach, skin, and nervous system are effected).

I have medications, a list of doctors, a support system and as long as I stick to my schedule, LISTEN to my body, and stay away from my triggers I’m good to go (easier said than done…) So, you’re probably asking what exactly is MCAS?

Mast Cell Activation Syndrome (MCAS) is when mast cell mediators are released too frequently or abundantly, in response to triggers that are not typically considered to be harmful, for example (foods, chemicals, environments, fabrics, fragrances/smells, soaps, medications, exercise, stress level, and even changes in temperature.) When triggered symptoms of anaphylaxis can occur in a variety of ways that affect ALL systems in the body. Specific triggers and symptoms of MCAS vary greatly between individuals and recovery time can last from a few days to weeks. We’re still learning more about this condition and need some attention on the topic! There is no cure for MCAS and if not managed properly it can be life-threatening and over time wears down the body. New triggers can be introduced at any point in time which makes it a slippery sickness to deal with. Typically, MCAS has a few friends that tag along like…

Postural Orthostatic Tachycardia Syndrome (POTS) is an abnormal increase in heart rate that occurs after sitting up or standing which can lead to dizziness and fainting.

Ehlers-Danlos Syndromes (EDS) a rare inherited condition that affect connective tissue. Your connective tissues provides support in your skin, tendons, ligaments, blood vessels, internal organs, and bones.

Now, I haven’t always been sick… I used to eat my weight my bread. I was a young, perfume loving, cosmetologist, going to concerts and out to bars with my boyfriend (now husband) and we were just a couple of kids having fun. In cosmetology school, I started having to sit out of class when everyone practiced acrylic nails because the odor caused headaches so bad, I would have to be picked up from school because I couldn’t drive (again this is all before I knew what was going on). After I graduated it expanded to hairsprays, hair color, and bleach, then moved to essential oils and my perfumes started making me feel sick. I went from using 4 to 5 different body spray/perfume combos to NONE… My crippling headaches became more frequent but, all my scans always came back normal. It escalated to the point I started having dizzy spells and fainting, my scoliosis had always caused back pain, but it started effecting my ability to walk/stand for long periods of time. I started breaking out into hives and rashes without warning, I started having muscle spasms/body trimmers daily…

I went to multiple doctors that would lecture about how they’ve had been in the medical field for x-amount years and never heard of such a thing or they would just flat out accuse me of being a hypochondriac or out for drugs. I had family members telling me that I was blowing it out of proportion, that I was being dramatic and out for attention. Which made it difficult to face and even more exhausting, confusing, and honestly a little soul crushing… I wanted to scream I felt defeated, crazy, and like a whiner, so I stopped talking about it and stopped telling people about the freaky doctor appointments I had coming up. My husband (boyfriend at the time) became my voice of reason and honestly saved my sanity (or what little sanity I had left LOL). He witnessed a lot of gross stuff…(I WANTED TO RUN AWAY FROM MY OWN BODY) but he stayed and held my hair back as I exorcize whatever triggering demon had infected me. He is my one and only and I’m forever grateful for him. <3 My aunt was diagnosed with MCAS first and noticed I also checked all the boxes too. With lots of research and determination I finally found a general family doctor who cared enough to do some research of his own and help me, that combined with guidance from my aunt and a MCAS Facebook Group I joined, I finally started to find my triggers!

I had just passed my dairy challenge and was about to start my wheat challenge when I learned our little man was on his way (a birth control baby, completely unexpected but so very blessed)! While pregnant and breastfeeding, my immune system is suppressed so my Mast Cells behave themselves (they don’t know why this happens, again layers and lots of unknown variables) but, I was feeling GREAT!! My goal was to breast feed for 2 years, but I had to wave my white flag at 22 months. Once I stopped breast-feeding it took about 3 months but, I started feeling shitty again, started breaking out in hives and rashes, started having dizzy spells and getting lightheaded again, getting sick randomly/ had a hard time eating… it was time to pick up where I had left off with my food challenges. I had a baby in the mix now so messing around/putting it off was no longer an option.

My Triggers Include: soy, wheat, peanuts, lavender, cigarettes, acrylic, alcohol, citrus, cats, strong perfumes & colognes, laundry detergents/ softeners, body washes, shampoos, conditioners, lotions, elastic, a LONG list of medications that also include vitamins (yes you read that right), most air fresheners/scencies/candles and an array of cleaning products. I can’t have anything super tight around me or I’ll break out in a rash. My body overheats easily but I also have a hard time staying warm (weird I know). If I get worked up/excited/stressed it sets off a Mast Cell attack. My body demanded boundaries for myself, for other people, for the world. I needed start ignoring that voice in my head that insisted that I am a burden and too difficult/ broken to have a life, a career, a business of my own.

Trust me I’ll be the first to tell you the inconvenience of all my triggers/ allergies (I am the one who suffers the consequence if I’m exposed) if I could choose, I would still be eating bread… but that’s the thing about a chronic illness, it’s not up for debate, its real, life-long, forever. No if, ands, or buts about it… This illness has flipped my world, my family’s world upside down and shook it a little, just to keep things saucy!! I had to re-learn how to cook, it controls what scents my family and I could wear/use, how social I can be, where I can eat, or even where I can go to have fun. Everything must be pre-planned and checked out before I can do anything. I’ve never been a fan of people telling me what to do and MCAS is no exception and I hate that I must limit what people do around me, but I’ve found that the people who TRULY care about me, don’t want me to be sick and don’t want me to be left out of fun events. In a way I’m a little thankful for my invisible illness because showed me who was really in my corner, it forced me to stand up for myself, believe in myself and showed me just because I get knocked down doesn’t mean I can’t get up, dust myself off, and keep going. I’ve made my plan and I’m going after my goals. This is my journey, this is my invisible illness, this is my life and if MCAS can’t stop me, you best just get out of my way!