This quote has really struck me recently. “And once the storm is over, you won’t
remember how you made it through, how you managed to survive. You won’t even be
sure, whether the storm is really over. But one thing is certain. When you come
out of the storm, you won’t be the same person who walked in. That’s what this
storm’s all about.”
In my case the storm has two completely different meanings. My body is under storm right now and nobody
seems to know why or what’s the reason for my rapid decline. I’ve gone from never using or needing an
EpiPen in my life to having to use it 11 times since June. I’ve added something like 12 new food
allergies/reactions. I see doctors, I
get testing, but no one has any idea of what’s going.
Eleven times my body has decided to shut-down to the point
of me needing life-saving medication. I
know what it feels like to have your throat close to the point of having
difficulty swallowing and communicating.
At times I’ve found myself an nonreligious person, terrified and praying
to my dead grandmother as I’m not ready to go and I feel like I still have
unfinished business here. That in itself
changes also changes person.
I go from running doctor to doctor, hospital to hospital, one
medical test to the next one, but truthfully speaking I’m exhausted,
frustrated, and want to cry. That’s not
the kind of running I want to be doing. Running
became my thing and how I coped with lupus and then my CVID diagnosis. That has currently been taken from me. I keep on losing things that I love (loved).
It
hurts and I hate it. I miss my favorite foods, I miss volunteering at my favorite places, I miss being able
to go places without having to worry about latex exposure, I miss knowing a
world without EpiPens and a laundry list of food restrictions, but most of all
I miss running. I miss that sense of
freedom, I miss the sense of accomplishment, I miss having that time just for
me and for me to test my limits and redefine what is possible.
Then more recently, I had another kind of storm experience
with my first real hurricane experience.
I was home alone dealing with Hurricane Matthew and I proved to myself
that despite everything going on, I’m still resilient and can be
self-sufficient. I survived two days
without power and with a very limited supply of food, but I did it.
Good or bad, I know that I’m not the same person I was
before these storms. Some may say I’m
more jaded by the medical system and how it continues to fail me. Some may say I’m more resilient and continue
to prove that I’m not one to give up with no matter what the world throws at
me.
I honestly don’t know how I’ve made it this far and am still
doing this, but not doing it really isn’t an option. I need to bunker down, find some cute
(latex-free) rain apparel and learn to dance in this storm as it doesn’t seem
like the storm that has become my health (or lack-of) is going anywhere
soon.
