Saturday, April 16, 2016

What Every Mast Cell Disease Patient Wants You To Know

Having a condition where symptoms are provoked by chemicals makes going out difficult. Well, let me rephrase that. It makes going out without total disaster ensuing nearly impossible. With the exception of medical appointments, I have not been able to leave my house. Even for those said medical appointments, I walk (or roll) into the hospital/offices armed with masks, oxygen, emergency medications, and Epi Pens. One wrong exposure and I am done for. However, I guess that is the life of a Mast Cell Disease patient who presents severely and experiences anaphylaxis upon triggers.

That type of isolation grows frustrating over time. Most days I yearn for what I could previously do. This week I was quite impulsive. I went into Trader Joes. Not only did I attempt to enter a public place for the first time in practically a year....I attempted it by going in without a mask and minus my oxygen. Stupid - I know, I know. Call it denial if you wish, but I was aware of the set up of the store. I knew that there was not a huge aisle with various aromatherapies, oils, cleaners, etc and that they did not have the foods I am airborne reactive to cooking in the store. I was confident that all I would have to contend with were the perfumes and detergents on other customers. With that being said, I entered unarmed. I mean, I am on a continuous H1 and H2 blocker infusion (benadryl + pepcid) AND it was a relatively "safe" store. Nothing could possibly go wrong, right?  Needless to say, I was incorrect in my assumption. I lasted between 5 and 10 minutes before I encountered a woman wearing the wrong perfume with a chemical makeup that was not to my body's liking. Once I developed a cough, some breathing difficulty, and the beginnings of throat swelling to where my voice changes, I knew nothing good was to come. Due to this incident I have been swollen and more easily triggered for days.

I start off with this story to serve as an example of what every mast cell disease patient wants you to know.

1.) Nothing is without consequence. 

I think this one speaks for itself. Every decision made throughout the day has a consequence. Eating can cause reactions. Heat can cause reactions. Cold can cause reactions. Exercise can cause reactions. Strong emotion (excitement, sadness, fear, etc) can cause reactions. Chemicals can cause reactions. On some days, that banana for breakfast and trying that new cosmetic just is not worth it. All factors must be considered.

2.) YES it is possible to react to scents. 

No, we are not crazy for reacting to specific scents. However, if you really think about it, it is not the scent itself that results in causing the reactions. It is the chemical components in products, oils, etc.

3.) It makes us uncomfortable too.

Mast Cell patients often have awkward encounters when informing someone else that they are triggering in some way. Yes, your lotion is very nice, but so is being able to breathe. Sometimes we just can not risk the exposure. As uncomfortable as it is for the person being told, we feel just as bad. We definitely do not find enjoyment in inconveniencing others.

4.) There are better days. 

These conditions wax and wane. What is tolerated one day could nearly kill us the next and vice versa. The "allergy bucket" theory is a prime example. Various aspects of life fill that allergy bucket. Pollen season may fill it 1/4 of the way. Indulging in high histamine foods like chocolate, tomatoes, or pizza fills it up some too. So, on a day like that we may not tolerate accepting your invite to go to the mall, gym, or to see that new movie. But we still appreciate being asked by chance we are having one of our better days when our "buckets" are not nearly overflowing.

5.) No two are the same.

No two patients are identical. Treatment and symptoms are not clear cut. It is trial and error. What works for one may not for another. Whereas one patient may live in a constant anaphylactic state, another may only exhibit milder symptoms. It is a toss up.

6.) Thank you. 

This disease is undoubtedly frustrating. Living this life takes its toll on everyone involved. Since having that understanding we are thankful for the doctors who have not given up on new treatments/research, for the friends who offer prayers and advocate for us, for the family members who make sacrifices daily to keep us safe, and even for the stranger reading posts like these because awareness is key to improving quality of life.