Goddamnit,really

Despite the influence of unnamed sisters, I tend not to curse much, especially not in front of Mom.

One exception is "Goddamnit," but that is not a curse for me.

I legitimately want God to damn whatever the "it" is, usually a part of my body affected by Friedreich's ataxia.

Of course if it's affected by FA, one could make the very strong case that it already is damned.

He can call me Matt

I don't really remember what my parents told 14-year-old me when they went out for the evening.

"Be good," "Love you," something like that.

What my sister said to my 14-year-old nephew last night? Make sure your phone's on in case Uncle Matt needs help. She called me Uncle Matt, although my nephew  often just calls me Matt.

Anyway, I fell. My first call was to Mom. When she came up, we called my nephew to drag me out of the bathroom and hold me up, so the lift could get to me.

Dad came over to help, too.

Soon, I was back in my chair.

Insurance sucks

Over the weekend, I got a text from my sleep stuff provider that said I had met my overall goal for the sleep machine.

I figured this meant insurance was satisfied I was using the mask to improve my sleep and would buy it for me now.  Well, I'd have to pay a good chunk of it, too.

Nevertheless, it was worth it, knowing I didn't need to worry about losing the machine and mask if insurance deemed me unworthy.

Anyway, I asked my sister to call and confirm this, so she called and left a message.

They called back the other day, and the answer was "ehhh, maybe."

They confirmed that yes, that is what the text meant about reaching my goal.

But, they added, my insurance might have another requirement, so ignore that text. Who am I kidding, of course they didn't say that last part.

How I hate FA

Here's a tip: If you want to feel really miserable and you have Friedreich's ataxia, try filling out an FA Medical History as I did yesterday.

Of the 20 or so issues listed with this question, "Which of the following FA-related health concerns do you/the patient have currently? (Select all that apply)," I checked 16 and added a 17th that wasn't there (cold feet).

I checked:

• Issues with balance/walking/regular falls;
• Coordination in hands and arms and manual dexterity – e.g. difficulty grasping/gripping/holding objects, or fine motor skills; 
• Vision impairment/vision loss; 
• Nystagmus/eye movements; 
• Hearing impairment/hearing loss; 
• Speech impairment/dysarthria; 
• Choking/swallowing difficulty; 
• Sleep apnea; Incontinence and/or other urinary issues and/or any bowel issues; 
• Depression; 
• Spasticity/rigid muscles; 
• Fatigue.

Trying to make me feel better, Mom pointed out that many people with all those problems would be stuck in bed. Didn't help.

Equally frustrating was the list of stuff I have done to help my body:

• Physical therapy, including aqua or hippo therapy; 
• Medications or supplements; 
• Stretching; 
• Exercise (cardio or strength training); 
• Bracing (back brace for scoliosis, leg or foot braces, AFOs); 
• Massage therapy; 
• Occupational therapy; 
• Speech therapy; 
• Modifications/accommodations at work/in school/at home; 
• Mental health services; 
• Use of adaptive devices; 
• Diet/nutrition changes.

I also applied for a Phase 1 trial that my neurologist had called a cure.

Sounds great. Of course, I probably don't qualify.

Plain old Matty

In the third year of the physical therapy grad school where my student PTs go, the students are sent into the local community in manual wheelchairs to experience life from a sitting position.

One of the students who works with me took the metro to a puffer lunch but was frustrated that the tables were all chest height for standing adults.

People in wheelchairs sure have to be resilient, he said.

'Whether we want to or not," I replied and he agreed.

That's the thing. I don't want to be resilient or brave or whatever.

It frustrates me that I have to be.

Another doctor

Over the past year, several people have encouraged me to see a psychiatrist to get some new happy pills, and they haven't all been related to me or my head-shrinker.

Granted, they are related to me or in the medical profession.

I suspect there is something to it. Of course, I really do not want my doctor list to grow.

No energy

I wore my sleep mask all night last night - 11-plus hours, and the seal was good!

I should have so much energy that I don't know what to do with myself.

I am a bit confused that all I have wanted to do today is sleep.

Having more energy is the main thing I am counting on with the sleep mask. If it doesn't happen, I am not sure why I am trying to use it.

Aren't I lucky?

When my cardiologist nearly gave me a heart attack by sending me to the heart Failure group, he said, "It's time to add another doctor to your team."

That turned out OK, but I see altogether too many doctors.

I started trying to remember the ones I have seen on a regular basis.

1. Pediatrician, who exclaimed "Good Lord" when I showed him a rash.
2. Endocrinologist, who was the first to take blood out of my arm.
3. Orthopedist.
4. Dentist.
5. Orthodontist.
6. Cardiologist, at least three.
7. Neurologist, nearly a million. I am just that awesome a patient.
8. Geneticist, 2.
9. Internal medicine doc, four or five.
10. Physiatrist
11. Urologist, dating back till I was 5-ish. That first one won me over with a picture of two monkeys that had nothing to do with urology.
12. Eye doctors, optometrist, ophthalmologist and neurologist-ophthalmologist.
13. Dermatologist.
14. Podiatrist, one of whom gave me a shot in a foot to remove a nail. I bent the needle, and in retrospect wonder if that's why I passed out.
15. Gastroenterologist.
16. Nutritionist.
17. Pulmonologist.
18. Sleep doctor.

I suspect there are plenty other, and that isn't even counting the really awesome people like nurse practitioners and physical, speech and occupational therapists.

Mom said I am lucky these people are in my life. I am not sure I agree. 

Up all night

On Friday and Saturday night, I wore the sleep mask for eight or nine hours a night, but the next morning the machine told me the seal was bad. It does that by showing you a red, frowny face.

Last night, Mom put the mask on me, but it leaked quickly, so I took it off.

I tried again, but it still leaked.

The third time was the charm -- a good seal. But my left leg began jumping, so I had to take it off to take some Advil.

Problem was I couldn't get it back on.

Well, that was a minor problem last night. My leg jumped until about 4.

It ignored the Advil, stretches, standing with my sister, sitting with my feet off the edge of the bed, even a few punches when I was real desperate.

I really do hate my body.

Thoughtful

Sometimes I wonder what a nondisabled person who pulls into a disabled parking spot "just for a second" would do if they (yes, I know it does not technically agree with person) suddenly found themselves using arm crutches.

Or someone who uses a wheelchair stall simply because they like the extra space suddenly found themselves in a chair.

I could go on, of course, with these mean ideas.

These are not kind thoughts, I know, but neither is using parking spots or stalls you shouldn't.

People who do these things aren't necessarily bad people, but they are thoughtless.

Plenty of people don't do these things. I don't know what makes them different.

I suspect I need to focus on the larger part of the population that is thoughtful and be glad my friends are.