I had planned all October to write some sort of eloquent post in honor of Dysautonomia Awareness Month, but here we are on the 28th and I think it’s time to embrace the fact that it’s just not going to happen. For the first time maybe ever, I find myself without the right words to express the reality I’m living.
“Awareness” is so multifaceted and knowing what to share is a constant struggle of mine.
the truth of the matter is, this October has been a struggle in ways I’ve never experienced before. As a quick and sloppy recap, here are some things that I’ve experienced this October, largely as a result of dysautonomia:
8 hospital infusion appointments totaling around 40 hours spent in the infusion center
3 successful at home infusions
1 semi-traumatizing failed home infusion in which I poked myself 3 times and was wholly unsuccessful
1 “normal” doctors appointment
2 new patients consult appointments with new specialists
1 outpatient MRI scan
Literally HUNDREDS of phone calls to and from : my insurance company, various outpatient imaging centers, pharmacies, potential new specialists, and existing providers
Oh yeah, and to top it all off - perhaps the most painful of all (or maybe it was just the last straw?) I missed out on an incredible nannying position after a week of newborn bliss (medical bills anyone?!) because the mother wasn’t comfortable with my chronic illness. I never disclosed it but she found it online through things I had shared long ago.
Looking at all of this in hindsight, I think it’s safe to say I’d certainly have a headache now if I didn’t before!
Still to come, pending release from insurance purgatory:
2 more specialized MRIs
a lumbar puncture (yay me!)
Nerve blocks / steroid injections
Aaaaaand of course, more biweekly infusions and a dozen more doctors appointments. And these are just the things on the immediate horizon that I’m already aware of.
I’ve heard a lot of comments recently to the effect of “I don’t know how you manage all of this! And with a smile on your face!” and the truth of the matter is, sometimes I don’t. It’s time we address this head on.
It’s now been well over 100 days since the last day I didn’t have a headache. More often than not I need to take zofran to be able to eat a normal meal. I attend more appointments than social events. My emotional reserve to handle the physical pain has run completely dry and then some. I’m grasping at straws most days. My fear that this is my forever is crippling and deafening more days than it is not. My determination to make phone calls and chase after people to do their damn jobs has weakened every single day as the month goes on. Some days I just don’t have it in me. But I have to. I don’t get a choice in any of this. Full disclosure: I recently broke down and ugly cried when told over the phone for the millionth time “sorry, we’re not accepting new patients. Try to find a different doctor who can help you.” I’m so beyond sick of being sick but even more than that, I’m sick of having to fight tooth and nail for care only to repeatedly have doors slammed in my exhausted , tear stained face.
So maybe this isn’t the picture perfect “awareness” post I would have loved to have written. (Maybe, God willing, I’ll be writing that post someday soon). This post may not be filled with sunshine and rainbows, smiley faces and inspirational quotes. But I’m learning that sometimes, that’s the reality of chronic illness. And slowly, painfully, I’m learning that it’s okay to not be okay. It’s okay to not feel inspirational, and it’s okay to not always fight the fight WITH a smile on your face. It’s okay to fight the damn fight with tears in your eyes too. It’s okay to not always pretend that you’re strong or pretend that you’re not affected by the speeding curveballs constantly thrown your way. It’s okay to admit, even to yourself, that this is really, really freaking hard to handle and cope with all that I’ve been dealt.
How’s that for some awareness?
This October, it’s not okay. None of this is okay. And that’s okay.