Allergic to the World

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

Mastocytosis Flare Recovery Month 9 Day 21

Best Beaches

After exploring several beaches of the panhandle the results are in. We did not visit all the beaches in the area but of the ones we did, here are our picks for best beaches of the Florida panhandle:

Best shells- Carillion

Best water- Miramar

Best sand- Crystal Beach

Most picturesque – Seaside

Day 7 Travel Home

Today, we left Florida and made the long drive back home. We did it all in one day, something I do NOT recommend 🙂 It was raining for the majority of the trip home, making it a little easier to leave…a little. I made it 126 miles before the first lip swelling and tingling began. I was 92 miles outside South Padre Island before my symptoms began to slowly return. The rain this time probably helped account for the extra mileage. I don’t know exactly what the days ahead will hold but I know who does. This impromptu trip was not what I expected but I am overwhelmed by His blessings.

Moving?

Growing up we moved a lot. I attended 9 schools then I married a military man. We spent the next two decades moving. We longed for the day when we would finally be able to put down roots and have our forever home. We thought Oklahoma was that place. Finally, we would not have to leave our friends and family behind, not to mention a piece of our hearts. I must confess it is easier to receive a set of orders that outline exactly where and when you will be moving than to seek God’s will. He is growing us in a different way now. I see Him working in our lives. It seems like we will be moving but where and when we do not know. Trying to find a team of doctors that know about my disease is challenging enough, let alone a specialist that can treat a complicated patient like me 🙂 I do know that God will make His will for each member of our family very clear in the days and months ahead and He will pave our way. I just wish he would send us an email with all the details lined out 🙂 Your prayers for guidance and direction are much appreciated.

Christal