Still, I choose Joy

These last few months our lives have changed.  Ok, not really changed, but turned upside down and then suddenly took a right turn, then a left and then started spinning round and round landing somewhere we never thought we would be. We have unexpectedly had to put on masks, quarantine for months, wash our hands a bazillion times a day, emote work (and school our kids).  We have had income and job loss, seen a loved one sick and sometimes die, and well, you know the rest. It has been brutal.  It has been lonely. It’s been weird.

And I think it has been a time of scary unknowns. In fact, even as things open up, there are still many unknowns in our life, work, and the world. Do you agree?

Believe me, I completely understand because I have had a time of scary unknowns with a medical journey that was painful, scary, hopeless and lonely.  Have you ever heard of MCAS (Mast Cell Activation Syndrome)? It is a rare illness where your mast cells (emergency cells in your body) go haywire when they come in contact with a trigger like dust, mold, bees, grass, chemicals and several foods.  As the mast cells, which hold over 200 chemicals including histamine, heparin, hormones and more, dump into the system they create chaos in every area of the body including reactions such as flushing, itching with rashes, erratic BP, swelling in tissues and joints, pain and more pain, headache, blurry vision, swollen eyes, runny nose, gastro issues, swelling of mouth, and throat, vomiting, feeling like passing out, and even anaphylaxis. Actually it can present itself in 1,000 unique ways and is different for each person, but it also changes and that makes is impossible.

In my case, even many foods would make my mast cells flip a switch, and at one point, I could only eat 20 foods that had to be low histamine and cleaned from pesticides.  "Would you eat a strawberry if you knew you would feel like you had the worse case of the flu ever?"  Nope, probably not.  Here is what one bite of chocolate did to me. Yikes, so much swelling that I had several chins. That is why avoidance is key to managing this illness.  High dose antihistamines and other meds help reduce the length of the symptoms and intensity too.

One bite of chocolate gave me

several chins! #notmodelready

Sometimes the scary unknowns made things difficult too. Just like right in this pandemic, I didn’t know what the future held (actually none of us does).  My brother would keep reminding me that right now there is no cure YET!  Ironically, it is just like Covid-19 in that way.  For MCASers, it is an illness that you manage. I managed it with 8-10 antihistamines a day (240-300 monthly), supplements, clean water, food and air, and avoidance.   Others manage it with additional medicines and even chemo.

With the mast cells going crazy, comes severe brain fog. I knew something was wrong when I found myself in another city on the way home and had to GPS my way back home.  This confusion made it hard to function some days.  It was hard to think, work, live or plan my life. Even walking became difficult. On those awful days of horrific pain in every part of my body, I had to choose joy. That was the ONLY option!

The days were not always easy. There were hard things like being alone a lot, continually monitoring everything because I never knew what I would react to. For instance, one day I wasn't reactive to avocado, the next day my throat started itching and closing in and meds to the rescue!

Being able to go to dinner or coffee was out of the question because I couldn’t wear a mask in the restaurant and eat very well, could I?  In my case, I couldn’t take the respirator off without getting horrible sick. That means I had to bring all my meals everywhere I went.  That is hard to do when leftovers made me sick. And to keep my mast cells from going haywire, I could not eat food that has been sitting out as that would make me react as well. So, I would eat a low histamine diet (some fresh fruits and veggies and some meat—but nothing from a can and definitely no leftovers). In the picture below, I was at a fundraising gala I where could not eat the meal and would leave the building to drink water every 30 minutes. It was tough to choose joy that day, but I did!

The pain, oh the pain - that was hard to deal with too as it was so severe that I become bedridden at times. A reaction could be from literally anything and when it hit, I would swell (10 lbs. usually) as my veins would push fluid from them out to my tissues. This made me feel like I had a severe case of the flu, the kind where you can't walk, talk, or eat. Oh yeah, and I would start to pass out and had to lie down.

Yep, I had to wear a mask too.

I guess I could say I was a mask trend-setter sporting many masks before the rest of the world joined me with Covid-19.  It was a necessary and valuable form of protection from scents, mold, dust, and chemicals.

This rare, hopeless, and painful condition doesn’t get better but lightens up for a time only to hit you the next time you “hyper react” to something. I remember lying on the floor crying out to God for healing. I remember praying, repenting, trying to breathe. It was brutal.  Losing the dream of life and the many “nevers” that I would miss were just as painful on the inside as the pain I was experiencing on the outside.

During my illness, I decided to choose joy when life was hard and wait on God in the storm. I even claimed the motto, “IChooseJoy2Day. I had to; I had no other option.

#IChooseJoyWhenLifeIsHard

This is me!  YEP, for almost a year I had to wear a mask everywhere I went except outside, in my car, and in my home. I used four kinds of masks.  A medical mask, the kind that nurses wear, that helps with perfume and other chemical scents; a cloth-like medical mask that also helps with dust, animal dander and scents; a white disposable construction mask for a few minutes in a moldy or musty bathroom or building; and a high-grade mold respirator that is 95% effective for mold remediation.  I use that in most buildings because many buildings have had water damage with mildew and mold or are old and dusty, such as a school auditorium with old curtains.

# IChoosePink

The respirator only comes in 'obnoxious pink', so #IChoosePink  

I will say there were times when I walked into a bank and saw their immediate surprise, dare I say alarm, on the faces of the bank tellers.  That is the reason I purposely held my debit card in one hand and my car key in the other. I would hold my hands up and state as clearly as I could from inside the mask, "I have environmental reactions and that is why I wear this mask." After a glance my way to verify my actions, I was cleared with a nod since most bandits don't wear 'Pepto-Bismol' pink masks for a holdup!

#IChooseJOY

It is a choice. While I admit that I don't always want to choose joy, I had to. I had no other option or I would become depressed in the pain, discouragement about the loss of my future, and the inability to cope with the trials of that day.  And I am thankful that God's word was such an encouragement to me as well. Here are some verses that helped me cope:

Romans 15:13  (NLT) I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit.

As you can see from the verse above, we need to trust Him (even when we do not understand what He is doing!), and then there will be a result of joy and confident hope from the power of the Holy Spirit. It's true. On the arduous days when I said, “IChoose joy,” I ended up with an overflowing of confident hope, even in the unknowns.

Here are a couple more verses that stretched me:

James 1:2-4 Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Philippians 4:4  Rejoice in the Lord always. I will say it again: Rejoice!

Yep, my faith sure was tested; yep, my endurance was growing; yep, I was (and still am) learning to trust God in a whole new way on a completely different level--all true.

How about you?  Where are you in your joy journey?  Are the current pandemic circumstances weighing you down?  If so, join with me in a prayer of Joy:

“Dear God, I choose joy!  Even though I have no idea what is happening around me or understand what you are doing, I know I can trust you. I give everything to you.  Help me see this trial as an opportunity to grow and not to get bogged down in the circumstances.  Help me rejoice in you and the trial and let me overflow with confident hope!"

Amen!