Chronic Illness

MCAS Life: Pass The Steroid Cream

Since posting about a new diet a few weeks ago, I’ve lost and gained the same 2 pounds quite a few times. Have you ever had trouble with your weight? It’s pretty maddening, isn’t it? It hasn’t been easy because of two weeks of flares with MCAS. MCAS Life! Ugh! I’ve used much too much steroid cream.

MCAS Life

MCAS (Mast Cell Activation Syndrome) is when your mast cells are out of control. They arrive when they should attack a bad thing in the body, but there are way too many of them. And, they release too many mediators. Mediators cause inflammation that should help the body heal. But, when the body is flooded with too many of them, the symptoms occur.

If someone has an allergic reaction to something, they may sneeze or itch. If a MCAS person has an allergic reaction, the body releases too many mediators (histamine). Then that person can go into anaphylactic shock. This is what happens to me, and I carry an Epi-Pen always.

Well, for the last two weeks or so, my mast cells were in over-drive and I was itching all over my body and would have hives and red cheeks. It was pure misery, causing me to exist on Benadryl. Benadryl causes awful side-effects in me: fuzziness in the head, sleepiness, and grumpiness. It’s a bad trio to live with for two weeks.

I realized that my body is probably reacting to the processed spaghetti sauce I’ve eaten lately and Daiya cheese. Eating processed foods can be very tricky for me. I might be able to eat them for months and then all of the sudden have a bad reaction to them.

So, my diet the last 3-4 days has been very bland foods with very few ingredients. For two days I lived on Rice Chex Cereal and almond milk. The first night I realized that although my Benadryl had worn off, I wasn’t itching. So, I ate the same thing the next day.

itch

When you have MCAS, it’s a life-long challenge. You may become complacent when you go for a long time without a serious reaction. Thankfully, my body was giving me a mild warning. I’ll be sticking to whole foods. Even a few bites of organic chicken made me feel bad. MCAS patients get looked at like we’re crazy sometimes, and our mast cells are crazy!

When you have multiple illnesses, it can get rough. Having a flare in one condition can bring about a worsening of symptoms from another. During the MCAS flare, my Sjogren’s Syndrome symptoms worsened. My joint pain was twice as bad as normal and my fatigue overwhelming.

Having all of this misery + adding the extra medications usually brings me a depressed feeling. It is harder to even try to function and one day I really didn’t. I just rested all day in my pajamas and didn’t even care. I honestly was so fuzzy from the Benadryl that I couldn’t think straight.

When days like that pass, it sure is good. I’m thankful that when I’m down there are many ways to get through the day. I have my cuddly pup who is constantly at my side and senses when I need extra kisses. Hubby is good to take care of me and understands when I just need to be. Scripture verses remind me that God is watching over me and cares.

There’s always a hope that better treatments for MCAS and Sjogren’s will be found, but I don’t know if it will be in my lifetime. Without new treatments, I’ll just keep taking my 20 prescriptions and keep the Epi-Pen handy.

@2019, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. This post contains only my opinions and experiences. If you have a medical concern, please consult you personal physician.

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