Thread by @Tinu

I have to be up late for work to measure certain things in real time. And I realize I haven't talked about #myspoons lately. So here we go.

Today I'm forced again to consider how the world is not built for me. I'm constantly trying to fit it. & it feels like failure.

I say "feels like" of course, because it is Not my failure. It's neglect so consistent deep that we're fooled into thinking it's normal to discount a portion of our society.

My new normal is to struggle and plan meticulously to do the simplest things. Today it was going to two different doctors in the same part of town. In my old life? So simple.

Even as recently as 2006, I would get in the car I had borrowed to drive (without a license, I was that broke), drive to the doctor, then drive to the other doctor, then pick up prescriptions and go home.

Now going to the doctor is a job.

It's not just a fucking job.

It's a motherfucking adventure.

I'll spare you the complications of going to TWO doctors. Here's what it is like to go to JUST one for me now, as a #spoonie.

1st. The job no longer starts with driving to the doctor. Nope. Starts the night before. Because I have to hit a sweet spot of sleep.

If I sleep too little, everything will be twice as hard and take at least that much longer.

If I sleep more than I normally do, I'll have an atypically great day, which causes all kinds of complications, such as doctors not believing me because "you're fine now."

In the morning, I'll have to make sure I'm up at least 3 hours before the appointment with nothing else to do. In the worst case, that is literally how long it will take to get ready.

That "throw on jeans" life is over. Brush your teeth, rest. Shower, rest. Think about how your life is BS. Rest. All the way to the car.

Which. I can't drive. So coordinating all of that has taken place a week before. Checking for last minute changes. Hoping I can afford to @lyft because rescheduling? HUGE PAIN.

Skipping over the details of the hell that is being driven Anywhere with #chronicpain? Once I get to the pain doctor, I get to sit in a chair designed to torture me.

The most uncomfortable chair ever.

At the pain doctor's office.

At ANY doctor's office.

MAKES NO SENSE.

Seeing a great doctor? Be prepared to wait up to 2 hours. 3 if you are even five minutes late. Especially the Rheumatologist.

Did they not know I was coming?

Forced to see a shitty doctor? Your time will be wasted in a whole different way!

Doctor's offices: now with people who are qualified to help you but won't because they don't believe you are sick DESPITE THEIR COLLEAGUE'S MANY BLOOD TEST AND NOTES.

Survived all that shit did ya? Good for you.

But wait. There's more.

Let's go to the pharmacist. Which is always like that time you tried to bust a new dance move and fell instead.

Didn't used to be like this. Before you joined the ranks of the #spoonies, a long time ago, a doctor would say "you need this medicine."

Then you would get your meds at a discount for generic or pay your insurance co-pay & go home.

But now, thanks to the #heroincrisis (I refuse to call it an opioid crisis because I'm not a fucking liar) & the fine folks at the @CDCgov it's apparently fucking illegal for me to be in pain.

Post-surgery? Fuck you.
#ChronicPain? Fuck you DAILY.

So now pharmacy visits go more like this.

"Hm. Tramadol. DId you get this prescription from your doctor?"
"Yes."
"Now that I've wasted your fucking time by asking you, let me further waste it by calling too."
"Sure. Agony is not a big deal."

That's for Tramadol which is barely an opioid that LITERALLY no one gets high from.

I hate every single pill I have to put in my mouth. They represent the failure of a system to treat me in my mind. But I hate being in pain more.

Anyway. That's weekly life if

-there are no insurance hiccups,
-no referrals,
-no follow ups with primaries due to referrals,
-if I get to see the doctor I planned to see
-there isn't a procedure, port flush, interim infusion, blood work or PT happening that day.

Once or twice a week, that's the deal. It can take up half my day or more just preparing to go, getting back and forth, being there for hours, then resting from it.

And yet, I am grateful. Some of my doctors listen without me fussing. My pharmacy is getting used to me.

& North Texas medical care has more empathy than where I lived most of my life.

On the other hand. Just being sick takes up so much time. Just. Existence. And the way you have to maneuver in life to be sick.

How do you work on that schedule? I don't even have the stamina to do this as a blog post. Tweet, rest, tweet is my best right now. It sucks.

Words used to pour out of me. I used to be the main breadwinner.

And having chosen not to marry again & not to have (well, birth) kids, the identity of providing and helping is what made me feel my life had meaning.

& if the occasional self-doubt isn't enough, government policies on health care and the way the work world is set up constantly echoes these feelings of inadequacy with jabs of their own.

No answers today. Just hoping expressing my thoughts helps someone else know that they aren't the only one who feels like this. Good night.

If I can get to sleep....