Disabled Chronicles, No. 2i

The amount of seconds my labs say it takes for my blood to clot and for any potential punctures, say to my spinal column, to patch themselves shut and stop leaking.

The amount of minutes it takes for Spinraza to thaw/ come to room temperature before it can be injected into my spinal column.

The amount of nurses that were not available on the team to help make things happen.

Disabled Chronicles, No. 2i © 2021 SandraJeanPierre.com

When I arrived, the clinic looked like a ghost town with a high tension vibe just below the surface. I didn’t think anything of it. Just chalked it up to Covid.

I should have taken my clue from the Elder sitting there with his newspaper on his lap. He was politely complaining to the receptionist about having been waiting so long. The receptionist politely listened and gave a really nice, if long winded ‘ask the doctor why it’s taken so long’ response.

It was from this exchange that I also found out that two of the nurses had moved on to other departments.

One, who made sure patients were qued up and ready to go for the doctor and the other who received the patients in recovery – both were gone and replaced by new faces.

But this shuffle still made the team two nurses light, as there are often 3-4 nurses doing patient intake. The 3rd nurse who sometimes does intake was in with the doctor in the procedure room. As it stood, there was only one nurse doing intake and a CNA. And those two were beyond frazzled. As the CNA put it, ‘they got me on skates today!’

It took about two hours for the intake nurse to get to me. By that time, the really funny and awesome CNA had put me in my gown, gotten the hoyer lift and prepped as much as he could without the intake nurse being there. We had to wait on her to do the transfer to the gurney, to do the pregnancy test (

) and call the pharmacy for the Spinraza.

It was about 4:20p when she got to me. My return trip was scheduled for 5:15.

We held out hope that if we ran through the intake I might still make it.

That hope was quickly dashed when she realized that the Spinraza had not been callled into the pharmacy at 5p.

I wound up having to rearrange my transportation – there was no way I would make my 5:15p trip back home.

To her credit, she took full responsibility. Like full responsibility. She felt super bad.

And I felt super bad for her because when she had to inform Doc, he was PISSED. I don’t know what words were exchanged but then she was pissed.

Let me tell you – you do not want a pissed off doctor working on you. I am telling you that today from experience.

I tried to watch the fluoroscope image of the prodeure this time. Trying to see if I could track the catheter as it snaked it’s way to my spinal column. Feeling it in my neck as I watched on the screen.

But the only thing I saw were the insides of my eyelids as I scrunched them in pain.

The two hot pinches of the lidocaine came and the catheter quickly followed. Shortly after, our problems began: the cerebral spinal fluid (CSF) that had to be drained out in order to make room for the Spinraza, did not want to drain out properly.

He adjusted, readjusted, took more fluoroscope images, twisted, pushed, readjusted some more. My grunts of pain became prolonged and more earnest.

He’d ask me what I was feeling and I’d spit out monosyllable words like ‘pain, pressure’ through my clenched teeth. I was afraid to speak sentences for fear of screaming out in sheer pain and abject terror.

Imagine having to lay still when all your body wants to do is rip out the offense and push the offender away.

But the offense was helping to get the medicine in place and the offender is the Good Guy.

And so he applied more lidocaine and kept pressing on.

At some point, I felt the warm gush of what I am assuming was blood (could have been excess lidocaine maybe

), bathe my neck. There did not feel like an end was in sight.

He found a place where the CSF did finally begin to flow, allowing room to be made for the Spinraza. Maybe I had been so loaded with lidocaine at this point but the only indication that the medication had been injected, was the warming feeling on the opposite shoulder.

And just like that. It was over.

I know this one was exceptionally brutal because afterwards, Doc came around, placed his hand on my head as I was laying on the bed and told me I did great and that I had his number – if there was ANYTHING call him.

My body didn’t start reacting to the events until we’ll after the nurses had packed me up and I was ready to head to the front of the hospital for my ride.

I felt the tension in my shoulders, an over all body ache, probably from clenching myself so tightly. The soreness at the part of my neck where he struggled the most.

As I slept that night though… I felt tingles across my face, the lower left of my back, my right calf, the top of my right foot, across my chest, of muscles, waking from their 45 year slumber.

The next morning, as my aide helped me lean against the edge of the bed to pull up my britches, my left leg bore the bulk of my weight and was solid as a tree trunk, unlike how it’d been wobbly just a day before in the same position.

These miracles, still happening, a year and a half into this thing.