Month: August 2019

Drowning

tragerstreit1 Comment

Still with you. Just…busy.

There’s a clinical trial that I can’t talk much about but it’s in San Francisco and the logistics of traveling in a wheelchair (and at last minute) got me like AAAAAAAA

The house hunt is on hold but I didn’t know it was on hold until we tried putting in an offer on a place and it’s got me going EEEEEEEEEEEEEEEEEE

I’m filing for SSDI at last and that will get its own post but for now I’m all BUUUUUUUUUUHHHHHHHHHH

I’m reaching the end of my short term disability and my financial situation is drastically changing so I’m going AIIIIIIARGH

The Walk to Defeat ALS is next month but because of all the above I’ve done literally nothing to prepare or promote it and it’s like UUUUUUUUUUUGH

Sadbrain has decided our method of dealing with all the above is: Don’t! and that’s just SFDSSDFGHJHGFDSA

So uh, I’m kinda drowning, here. How are you?

Rise and Shine

tragerstreitLeave a comment

If you call me when I’m sleeping, I’m gonna miss your call. That’s how it is. It’s a physical comedy of errors when the phone rings while I’m sleeping, and it goes like this:

  1. Realize the phone is even ringing. This has always been a problem, specially if I’m having a weird dream. All my dreams are weird.
  2. Untangle limbs from the blankets by flailing like a flipped turtle. I sleep with blankets free-floating on the bed, to be scrunched up as body pillows and bolsters as needed. When I fall asleep, I usually have the comforter and sheet across my belly, one blanket scrunched up under each elbow like arm rests, and one bundled up across one shoulder to cradle my head in place. God knows how that looks when I wake up. Some days, all of the blankets are still on the bed. Some days.
  3. Find the phone. Where is that noise coming from. Unearth it from the stratum of blankets.
  4. Pick up the phone. This needs both hands.
  5. Determine who is calling. If it’s someone I need to contact, proceed to step 6. Otherwise, go the hell back to sleep.
  6. Find the bed remote, to raise the head and sit up.
  7. No seriously, where is the remote. I left it on my stomach when I fell asleep. Did it fall alongside me? Is this it? No, that’s the AVAP hose. Is this it? No, that’s the catheter tube.
  8. Seriously where is the fucking remote.
  9. Give up and try to sit up from laying nearly flat. This involves flailing my arms like a contorted back stroke, realizing I can’t sit up because I’m tangled in a Gordian knot of throw blankets, unearth myself, perform the bed-ridden backstroke again to get myself up on my elbows, and heave myself upright.
  10. Pull off the AVAP mask.
  11. Lean over to turn the AVAP machine off.
  12. It’s too far. Scootch my butt closer so I can reach the button.
  13. Paw ineffectively at the machine because my fingers are garbage meat noodles, finally manage to turn it off.
  14. The phone has stopped ringing.
  15. Find the fucking bed remote lying one inch out of my previous reach.

So yeah, if I’m not anticipating your call, I’m missing it. Leave me a voice mail. I’ll call you once I catch my damned breath.