Mastocytosis Flare Recovery Month 10 Day 9
Bad Days
We all have bad days. A bad hair day is something every girl has experienced. When those locks just won’t obey, it’s time to pull out the hat. Some bad days are rectified by going to bed early and starting fresh in the morning. Then there are those times when the bad days seem to string together like train cars one after another. Well, I have been home from my impromptu trip to Florida for a few weeks now. Unfortunately, it has been a rough ride. I have pretty much been bed bound for all but couple days. The swelling in my throat, tongue, and sometimes lips has returned with a vengeance, so have the headaches, low energy, pain, dizziness, feeling faint, and I have had many reactions since being home.
Forgive the terrible photo, it’s actually pretty hard to take a picture of your own mouth, it’s dark in there 🙂See the uvula (some people call it the punching bag) it’s not supposed to be lying down on the back of your tongue like that. The back of the throat is supposed to be much bigger than what you see here, especially if you are a singer and normally have control over those muscles. Swelling like this is very serious, it can cut off your airway and lead to death. It is called anaphylaxis. This is the most serious of all allergic reactions.
Bye-Bye Formula
We are entering the most dangerous time for mast cell patients in Oklahoma, fall flare. More people are hospitalized in the next two months than the rest of the year combined. Currently, I am reacting to things that have not been a problem before, including rice. The rice not going well is a pretty big deal. 99.9% of enteral formulas, or medical foods that are broken down into the basic building blocks of foods like amino acids, are corn based. For the past seven years I have not been able to tolerate corn. Now rice is not an option for me now which means I have lost all formula options for the time being. I will not be able to test a formula again for at least two months, putting me at a full year with no food. I am discouraged but not hopeless. I know how my body feels when I’m away from here and near a coast. I am hopeful that my doctor is right again and going away for a month will help me to regain the rice and much more.
The Dance
People always ask me what it feels like when I am so activated. It’s like when you were a kid watching Superman cartoons, remember how Superman reacts to kryptonite? It is like that. All my strength is sucked out of my body leaving me a crumpled heap. I literally feel like I am being poisoned. There is literally a war going on in my body, a war on a cellular level. When our bodies sense an allergen or something it believes is an invader, the mast cells release over 200 known chemicals, including histamine, heparin, & tryptase to fight off the offending substance. The body outwardly responds to these chemicals with what we recognize as allergic reactions, which can be anything from sneezing, itching, hives, or even anaphylaxis. These chemicals actually call in reinforcements to the fight and signal you body to make more mast cells. Subsequently, once you have a reaction, it is much easier to have another in the days and weeks ahead. This is my Masto dance. It’s the same dance that everyone with a mast cell disease does on a daily basis. Some days it is two steps forward and there steps back, sometimes you go in circles. I just need to keep going and one day the steps will change and progress will be made. These recent reactions have helped me realize how far I have come in these 10+ months. I am really missing the beach and feeling full of life. For the time being, I have traded my ocean view for my current view.
Resting in Him
I feel like I am living and understanding the words of the Apostle Paul on contentment in his letter to the Philippians.
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. Philippians 4:12-13
This disease is very complex! It can be seem so big, so daunting, much bigger than I can handle. Then I compare my problem to my God, who created the earth with just His words. He literally didn’t have to lift a finger. My problems, and yours too, are nothing He can’t handle!
Peace and joy,
Christal