Current COVID-19 recommendations had long been part of the Cervantes family normal, 2019

Wednesday night I started to write a post about how terrifying COVID-19 is to the medically complex and fragile communities. I mean I could NOT stop thinking about it… possibly because it is constantly on the news and all anyone can talk about. But it is also a stark reminder of how different our lives are just five months after saying goodbye to Adelaide. I can very clearly imagine the measures we would have taken to protect her. I can feel the anxiety and fear in the pit of my stomach like a reflex memory. My contingency plans would have contingency plans and I’d likely have the whole family in hazmat suits with Adelaide quarantined in her bedroom for protection. But then I remember this is no longer our reality and it takes a split second for all the emotions to wash over me: I feel relieved that we don’t have to worry about Adelaide being affected. Which reminds me why we don’t have to. Which invites in my ever-lurking grief with a touch of guilt for good measure. Then I think of our medically fragile and complex community and my heart hurts for them. I may not be creating contingency plans to keep Adelaide safe but so many other families are.

Then, yesterday morning, I woke up to an email from my dear friend, Courtney, who along with her son has a severe mast cell disorder among other complicated medical issues. She communicated so much more clearly, first-hand, the fears I feel for these families and I asked if she would let me post her email on the blog. Please take her words to heart, please wash your hands, please stay home if you are feeling unwell and please leave the medical masks and supplies for the people who really, really need them. My heart is with you all. Now, it is my pleasure to introduce you to Courtney…

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I get asked a lot right now about how I am doing given the corona virus. Most people know me and my son live with chronic rare diseases - diseases that are complicated enough without adding a corona virus to the mix.

The early days of the virus felt like suddenly the world was living our version of normal.

My life is normally spent carefully avoiding things that may make me or my son react. It means we wash hands a lot - like a lot a lot. I wear gloves to certain stores, we wear masks when in big crowds that smell like perfume, we change clothes when we come home from being out, we don’t share things with anyone - food, drinks, etc. to avoid cross contamination and a reaction. We don’t eat out - or eat food prepared by others. We never touch our faces when we are outside the house - or at least try hard not to. Did I mention that we wash our hands a lot?

A little bit more about Mast Cell Diseases. You can also learn more at TMSforacure.org or in my blog post, Mast Cell 101

We have been stockpiling our safe foods for years - when you can only eat a few specific brands and a few specific types of things you never want to run out. We already have two freezers in our garage full of safe chicken and blueberries - as well as potato chips and Rice Krispies both brands that were safe but have since been discontinued. We stockpile items when manufacturers stop making them but also just in case they do. When the number of foods you can eat matters so much, you never want to be without.

This has been our reality everyday for as long as I can now remember. Constant planning - prescription ordering - food buying and cooking - laundry and lots of hand soap. It’s a small way to have control over the scary world and the many triggers in it that can cause us to react. Does it sound familiar to the current environment?

But in the last few days, as things have progressed with this virus - Corona is more than just stockpiling food - it's a real life nightmare - an unpredictable and aggressive virus that no one understands. That is unfortunately, not the flu and despite some reports not just an old person's problem. It's hard not to freak out - trying to balance living and knowing when to hide in your house.

But our life is more complicated than the average person. I've been on steroids for 6 years - steroids that suppress my immune system, meaning it doesn't always act how it's supposed to. Neither me or my son have safe fever reducers or cough medicine or even an antibiotic. All of our medications have to be compounded by a pharmacy that ships to us to keep out any fillers/dyes or flavorings. Even if I do get sick, and am able to get a new medicine compounded, I still have to hope my body allows me to take it and that it doesn't cause an anaphylactic reaction. In the last 6 years, I’ve successfully added 5 medications and failed over 20 - and by fail I mean passing out and using an epipen to counteract the reaction. Not the best odds. I’ve also reacted to IV tubing, (did you even know that was possible??) --saline, and most recently IV Benadryl. Yeah, the thing that is supposed to help you with reactions. That's how crazy my body is in its normal state.

Miss A and her very stylish face mask, 2019

As I'm reading stories from other countries about running out of ventilators and doctors deciding who is worth saving, it is hard to feel optimistic that I'd make the cut. Yes, I'm young but I have so many co-morbid issues it doesn't feel like the best odds. Nor is there any guarantee that my body will accept the support they can offer. The few people I've said any of this to out loud always say that won't happen. But the fact of the matter is they don't know.

So where does that leave those of us who on the outside look normal but know that we are the ones at risk. We are hunkering down. We are trying to stay calm and positive but knowing your child spent the first three days of the week in school means we will not feel safe until the window of infection passes us by.

I have never wished for our crazy version of normal more than right now. Corona makes my mast cells look like heroes. How am I doing with corona? I am scared and I am confused and I am trying to remember to breathe---and grateful each day that I still can.

-Courtney