The World Is Crashing Down
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?
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.
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.
**Editor's note: This blog is inspired largely by my dear friend Kelly, an incredible rare disease advocate and who has shown me the power we all have when sharing our truth. This post appeared in her amazing blog that can be found here. **
