The gospel according to Amy: aging, chronic illness, & CVID

It's my birthday, I can commit heresy if I want to

Headed to a Pilates class, featuring grippy socks of the non-72-hour-hold variety.

In a couple of days, I’ll be Jesus Christ during the Crucifixion-aged. Roughly. Depending on which archaeological and historical literary sources you ask and which flavors of religion you’re willing to argue with.

At the ripe old age of 33, I’ve failed to build up a cult following. This is a relief to me and anyone who has ever met me. What are you supposed to feed disciples, anyway? Are they house-trained?

Anyway.

I'm glad I'm getting older. I don't understand the fear of time or crow's feet or senior citizenship or crossing the River Styx. I've already lived the life of an 80-year-old. I'm still here. I'm going to keep aging until God, Anubis, Nergal, or whichever death deity bothers to show up does so and stops me.

The past 6 years in particular have been eventful. I've:

• Spent nearly 2 years on oxygen with no clear reason why it COVID/pneumonia wanted to be inside me so bad

• Tried to work shitty jobs, won shitty prizes, fought to master shitty life coping mechanisms, gradually felt less shitty

• Recovered randomly but with fun new features such as frequent fevers, chronic illness variety packs, still many ????s about what the hell is happening

• Got a job I love working with a bunch of insane people #agencylife while my partner also found much better work

• New house who dis! Escaped a shitty landlord to get a place we love with a huge yard for the dogs (most of which immediately collapsed in a freak storm!)

• Picked up some hobbies, made new friends, and refused to let the state of everything send me into doom spirals. Turns out life is better that way, even if...

Down With the Sickness

The biggest thing is more recent. After five bouts of pneumonia this year, two hospitalizations, and a partridge in a pear tree, I was diagnosed with CVID.

That's not a typo for COVID. Common variable immune deficiency is an immune condition resulting from a lack of antibodies and explains 97% of what’s been wrong with me since my *checks watch* entire life, but especially my mid-20s and up health crises.

So, here’s the thing. I’ve been sick for a long time. I sort of… don’t care anymore. I live my life. I go to yoga, I kayak, I work hard, and I spend time with people I care about. I'm too busy to want sympathy...or anymore goddamn hospital visits.

Pro tip: Befriend someone who also has a bad immune system and enjoy an intimate ER date night!

Chronic Illness Time! Let's Talk About CVID

• Chronic illness means a lifetime subscription. I will not get over it. I will be seeing an immunologist for my entire life about this and its complications.

• I have an infection of some kind nearly weekly. They are more serious than a normal person with a cold. My organs are already damaged from repeated, sustained infections, and I cannot build up immunity. I will continue to be sick and risk hospitalizations or worse.

• I need immunoglobulin replacement therapy once a week for a DIY immune system to mitigate these infections.

• This treatment costs $1,800 a week, and the approval and scheduling process to access this has been breathtakingly incompetent and ineffective. Thanks, America!

My growing collection of antique poisons, including a full vial of mercury, fondly known as "the fiery spit of Satan."

The steroid solutions I use for breathing treatments in the nebulizer, which I definitely do everyday as prescribed, exactly as often as I should, and if you tell my pulmonologist otherwise, I'll find you!

Summary: In Which I Say Some Variation of Shit a Shit Ton of Times

It's good to have an answer about what's going on. As anyone with a Shit Always Wrong Disease will tell you, having your doctors shrug and tell you your labs are clear sucks. Since being healthy isn't an option - thanks for the shitty genetics, mom! - the best I can do is know what I have and do whatever I need to do to finally treat this shit.

Anyway Part 2.

I write for websites for a living, so I don't know how often I'll update this thing. It's nice to have an archive of some kind, though. I always have thoughts, special interests, pet research projects, etc. in my head, but sitting still and reflecting isn't my top priority these days. I enjoy doing, moving, breathing, pushing - things I couldn't do for a while, ya know?

So, to quote a Tumblr post from eons past: sayonara you weeabo shits! Thanks for reading.

Kayaking with The Man and lunch on the river. Chef's kiss.