Drinking fast

 My sister asked me recently why I gulp may water at the beginning of dinner.

I do. 

I take pills at dinner that I am supposed to take with eight ounces liquid, but I drink twice that at least. 

I told her it was because I don’t like water, so I drink it fast.

That is part of it. IL don't like it but know it is good for me.

Another reason is that I know I can choke soon a liquid if I drink fast or slow. I drink most of the water to eliminate the choking hazard for the moment.

Maybe I should have told her that first. She might not have mocked me as much as she did.

Denied again

Two Thursdays ago as I was getting in bed, I got an email from my rep at my wheelchair company. He was emailing to let me know that my new insurance company had denied my claim. He hadn’t read the denial, but we needed to set up a peer-to-peer review with my doctor within 10 days. Call him the next day, he said.

The next day we called but he wasn’t available. He did have a colleague forward me the denial. They authorized the chair but said there’s no documentation behind standing so they denied the stander feature of the chair and its accessories.

The Tuesday after the three-day weekend, the rep called and encouraged us to set up the peer-to-peer review, so we called the insurer, who told us the provider had to set up the review. We called the rep back and finally texted my physical therapist, who suggested the standing feature and knows about my wheelchair needs.

On Wednesday, a funding specialist emailed from my wheelchair provider that my doctor had to set up the review. I emailed back to explain my PT was the better one to review my wheelchair needs and was told only my doctor can do reviews. I still hadn’t gotten an official copy of the denial yet, so we called the insurer to get more time. They had no record of the denial.

I got my copy today.

Wow, do I hate insurance.

Trials and tribulations

 I am waiting to hear back about a yearlong trial of a drug called Elamipretide that my neurologist is conducting.

It would be a treatment for cardiac and vision issues associated with Friedreich’s ataxia. If it works.

I have both, so that would be a great treatment.

Elamipretide would not be a cure. 

The other trial I am interested in is a cure.  It’s the next step in the trial I did a few years ago. That drug replaces the frataxin I am missing. It also is a yearlong trial.

They’re having a problem, though: non-human mammal mortalty at high dosage, I believe is how the put it.  Yikes.

The trial is on hold for the moment, obviously.

The cure trial is appealing not just because it is a cure. It makes sense—giving me what I’m missing.

I don’t want the cure to kill me, though, so maybe I’ll try the treatment. If I get accepted.

Oh, shi ...

 Come on, legs, stand! I begged, pleaded and cursed this morning as I sat on the toilet.

For me, using the toilet is a multistep process. I:

1. Transfer to the toilet
2. Stand up to pull my pants
3. Take care of business
4. Use the bidet
5. Have Fane bark for my sister
6. Transfer back with her help after she pulls up my pants

My plea, between steps 1 and 2, didn’t work, and before I could ask Fame to bark, it was too late.

I am very fortunate to have my sister and Mom to help me clean up.

I cannot begin to tell you how unlucky I am to have Friedreich’s ataxia. They’re pretty unlucky, too.

Fried rice is hot

In the Permian Basin of Texas and New Mexico lives the at-risk dunes sagebrush lizard. It remains a point of contention between conservationists and energy companies, but eight or nine years ago the head of the U.S. Fish and Wildlife Service testified about the lizard and other issues before Congress. That gave rise to my favorite closed captioning error … until two weeks ago.

The dunes sagebrush wizard.

Google Chat topped it when I was meeting with someone at the Department for Aging and Rehabilitative Services to get help finding a good keyboard.

She asked my disability. I told her. She looked confused. Captions had rendered Friedreich’s ataxia as Fried Rice Sexy. Mom jumped in.

Dictation software probably won’t work.