Allergic to the World

Mastocytosis Flare Recovery Month 7 Day 19 – Saturday
Today, we were at the store buying a power inverter for my pump. We headed toward the front of the store when I heard a lady yelling “Wait,wait! I’m following you.” We were near the check out line and there was a sizable crowd; as one would expect on a Saturday afternoon. I turned around and to my surprise she was talking to me. The smiling woman proceeded to ask me if I was going through chemo. I told her no, I had another disease that was in the same class as cancer but instead of making tumors my body makes too many immune cells. These immune cells build up in my internal organs making me have allergic reactions to pretty much everything that enters my body through eating, drinking, medications, anything absorbed in my skin or even fragrances or aromas inhaled. I battle anaphylaxis. She introduced herself as Caroline and she was a stage 4 colon cancer survivor. She said “I just want to tell you that God is good and I’m going to be praying for you.”

I was so thankful for the kindness of a stranger who was able to look past my PICC line, mask and fanny pack overflowing with tubes. Remembering what she went through, she offered the gift of prayer. I thanked her and as we parted I was a little overwhelmed. This was the first time a complete stranger has responded with so much compassion.

In the minutes that followed, I began thinking how with just five short words she was able to explain what she had, level of involvement, and the smallest amount of time she had been cancer free to be qualified as a survivor. Having several friends with similar cancer battles, I understood what her treatment may have entailed and some of what she may have endured. I can imagine that she had surgery, was progressively sick after treatment days, she probably lost all of her hair, and she may have had the unescapable metallic taste in her mouth. Although Mastocytosis has been recognized since the 1980’s it has only recently started a growth explosion. Most people feel like pioneers because the general population and most medical providers are unaware of this debilitating disease. It is really hard, even for close friends and family to understand exactly what it is like living with this particular disease. Only by living with a mast cell disease could someone know the daily dilemmas we face.  For example, walking into a public restroom and succumbing to the combination of air freshener and bleach. Having a wave of instant and extreme nausea plus feeling like you may pass out. Holding your breath, you quickly retreat while the room gets dark and your body becomes weak. When the nausea finally leaves the it is merely replaced with brain fog, trouble concentrating, flushing, feeling like your face is on fire, itching, and possibly hives. When you finally start to feel better it is then you realize you still have to go to the bathroom.

I am not complaining. Caroline was right, God is good. He has provided everything that I have needed for this battle however, if as pioneers we do not share what it is like to live with this strange disease we will never move on from a first generation experience. Helping others identify these odd symptoms early on will help them to prevent their disease severity. I went undiagnosed for more than two decades and that is much harder to come back from than someone who receives early treatment.

It is very challenging but His grace gives me the ability to get up everyday and be his hands and feet to His people. He gives me hope that a cure will one day be found. As she endeavors to pray for a stranger, I too will be praying for Caroline and for her ministry of the heart for today she was my angel.

Don’t forget to be kind to strangers, for some who have done this have entertained angels without realizing it!
Hebrews 13:2 NLB

Today is day two of a lowered dose of steroids. I have significant swelling of the face, lip and throat. Day two is always worse for me until my body gets used to the new dose. Although I do not feel my best, I am thankful to be able to be moving forward.  Getting off the steroids all together is the goal, which is something I have not been able to do for 7 1/2 months. There are lots of side effects and other complications that come from being on them long-term. My battle with Mastocytosis is ongoing but there is movement. Today I feel like I am living the lyrics of one of my favorite songs by Mercy Me. 

“Move”

I’m not about to give up
Because I heard you say
There’s gonna be brighter days
There’s gonna be brighter days
I won’t stop, I’ll keep my head up
No, I’m not here to stay
There’s gonna be brighter days
There’s gonna be brighter days

I just might bend but I won’t break
As long as I can see your face

[Chorus:]
When life won’t play along
And right keeps going wrong
And I can’t seem to find my way
I know where I am found
So I won’t let it drag me down
Oh, I’ll keep dancing anyway

I’m gonna move (move)
I’m gonna move (move)
I’m gonna move

I’ve got to hold it steady
Keep my head in the game
Everything is about to change
Everything is about to change

This hurt is getting heavy
But I’m not about to cave
Everything’s about to change
There’s gonna be brighter days

I just might bend but won’t break
As long as I can see your face

[Chorus]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat [x2]

I just might bend but won’t break
As long as I can see your face

[Chorus x2]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat