You know what, fuck it, let’s talk about money and #CripTax for a second. I have the blessing of a full time job with benefits, which I am incredibly grateful for.

Let’s talk about where that income goes, starting with rent.

I have to pay for an accessible apartment near my care team and close enough to buses and metro that I can get to work. My apartment ramp sucks, and even THAT apartment is well over 1k a month.

No, I can’t enter through the front door, don’t be silly.

Next, let’s talk food! I can’t cook well. I order a lot of delivery, but have weaned down to about half half. I can easily spend $500 a month on food.

Yes, I also wish I could cook. No, my kitchen can’t fit my powerchair. No, ARFID won’t let me live on sandwiches alone.

Now the fun stuff: DOCTORS. I run through my deductible in 6 months easy, and I have an FSA so that isn’t taxed. That FSA does come out of my income though, and I use up that $2,600 FAST, and still have more expenses after, like wheelchair repair, Ubers to doctors and parking.

This doesn’t touch stuff like ice packs, vitamins, dog food-things that are necessary but not healthcare.

I can afford to put away $100-$200 a month. That’s barely anything.

Now let’s talk about shit that would dramatically improve my life: namely a hypermobility powerchair.

This is it. It’s $21,000, and I can almost guarantee you that when insurance has to look at me for a chair again in four years they won’t approve. https://twitter.com/snoringdoggo/status/1299943762123206657

The add on features seem frivolous to an outsider, but to me they’d make a dramatic difference. I could buy groceries alone again, without hurting myself. I could go on the metro late at night without someone having to tackle my current chair aboard. I could have long nights.

My new diagnoses also mean that tilt could make me pass out a lot less

That’s not realistic for me to save up for. It wouldn’t get crowdfunded. I’m too small an account for that.

It’s the same thing with eventually getting a wheelchair van so I can fulfill my dream road trips-it isn’t happening with the amount of money I can reasonably save.

And I’m GENUINELY LUCKY to get by, I want to emphasize that, I’m incredibly fucking lucky. I’m grateful.

But it hurts, sometimes. It’s stressful. When my needs changed, so did the equipment I needed. We just aren’t set up to make that change and it frustrates me