Tuesday, April 2, 2019

Anxiety? Ya think?

So I saw this pain psychologist, and he ran me through a personality test. I scored high on anxiety. So he referred me to a biofeedback specialist, but apparently even if you have slight asthma, that can ruin biofeedback. 🙄 Another medical option stymied by some other diagnosis. What else is new?

But then I saw this by @VoiceoverPete and it hit me: It's not that I'm anxious... It's that my anxiety is totally justified!

Give a listen:



That bad thing frequently comes to pass, and sometimes catastrophically. The pain— interruptive pain— is guaranteed to show up, if not now, within 20 minutes of now, usually less than 10. It may be a stop & take medicine pain level or a stop everything pain level, but it's coming.

And I fall super short of normal all the time. Several roommates over the years have expressed concern over the years. I was forbidden from hand washing dishes because I can't feel the dish to know it's clean and I can't see if they're clean because the same nerve damage ruined my eyes too. I have no confidence my "best" is good enough.

Thus, is it any flipping wonder that I'm anxious? It's actually pretty astonishing how calm I am. But to be fair, it's boring now. Unexpected? Sure. There's no warning. But it's pain so familiar, so... Tuesday, that it's just not worth a fuss.

The thing I hate the most is I'm such a waste of a human being like this. All this potential to give back but— crap. Hold on. It's medication time again...


Monday, April 1, 2019

Why it’s been so difficult to post...

I’m not in any shape to do what I set out to do here. I’m not in any shape to put a positive spin on chronic illness. I’m so overwhelmed, I feel immeasurably small.

First off, I know I want to live. Let’s get that out of the way. I may pray for death, but that’s completely different. I’m not about to force death’s hand. It’s painful and always regrettable. Besides, I don’t want to leave five minutes before the miracle.

And I may be a whiny bish right now, but damned if I’m not wore the hell out. I’m tired of being shut out of pain care just because my types of problems (both chronic pain AND chronic nausea) seem beyond their imagining. I’m tired of one ailment triggering another or making some treatment impossible or or or... I’m tired of being a complex problem. I may as well tattoo on my forehead: Here Comes Trouble.

I don’t want to bring you guys down, but it’s been a struggle the past few years, and it’s not good right now. I need to gain weight but I have no appetite. I need to be on thyroid meds but can’t because that will suppress my appetite. In the meantime I have hypothyroid depression and a really crazy roommate who seems jealous of my disability (if she knew the pain I was always in, she wouldn’t be so quick to wish for this... #AblesAreWeird)

I’m scared because I’m slowly wasting away and the ibuprofen I’m forced to take on the regular to keep the edge off the pain may be the culprit slowly starving me to death.

They HAVE the means to treat me otherwise, but muh drug war. 🙄


Send prayers, fellow pain warriors. I know you know they’re destroying us. Keep the faith. (And maybe flood the White House with letters sharing your struggle... https://www.whitehouse.gov/contact/)

Much love.