They're great

A few weeks ago I saw a new urologist. I wasn't sure she w  as for me -- she wasn't in my insurance plan -- but my doctor recommended her and said she had experience with neurological diseases.

What really sold me was she called at 7 p.m. the Friday before the Monday appointment and spent an hour asking questions.

One of the things she talked about was triggers, things that make certain people have to urinate.

For me, a trigger seems to be returning from walks when I know no one is around to help me if I have a problem. I'll be fine til I get in the door.

The day before Christmas Eve, that was the case. I did prepare.

Going up the ramp, I took off my mitten. But I got tangled up in the doorway with the pooper scooper, and well, it was all over then.

To top it off, I slid off my chair.

Mom and Dad were out of pocket. I called my sister on the off chance she was back. She wasn't, but she sent in her kids.

They came down and used the lift to get me on the toilet.  Eventually. First, I fell backward into a urine  puddle. Then my niece got a bloody nose.

My nephew then began taking off my snow pants, which  I wear so I can wear shorts in the house.

My niece said as he was going to let him deal with this part, but when he struggled a bit she helped.

They figured out a way to pull my pants up without me standing or fully in the lift and a way to get my legs in the lift from a standing position. They really work well together.

Then they took a photo to send their mom and went off to do their thing.

I may have crappy triggers, but I have awesome nieces and nephews.

An early Nativity

When I was a child, we decorated the house for Christmas on Christmas Eve. As I understand it, one grandfather decorated the tree while my grandmother and kids were at midnight Mass. So by ancestral standards, this Nativity is early.

It was not a bad year for action figures. I got three new ones, which doesn't sound like many until you
consider that I have no more room in my room for toys. I also  reclaimed a few old toys.

There is the Big Three, plus Santa, who is wielding his walking stick like a club.

Starting on the far right is Buffy the Vampire Slayer because what is Christmas without the Chosen  One? A slayer is born in every generation, so of course a slayer would be around the Nativity, ensuring the other Chosen One a birth uninterrupted by the forces of darkness. She might not have Buffy's impeccable fashion sense, but ...

Next up is one of the new ones, courtesy of a brother-in-law. He had sent me a photo of some figures of my youth.  I told him that I had always wanted Aquaman, and a week later Aquaman was waiting outside my door. It isn't an original -- my brother-in-law is not made of money. Black Manta (third from left), Aquaman's archenemy, came a few days later after my brother-in-law asked for a compelling stance when I displayed Aquaman in my room. I told him that I'd need Black Manta for  a compelling stance. This was not a shameless grab for another figure. I was just trying to get out of making a scene. But when Black Manta got here, there was nothing to do but create one.

At first glance, Aquaman might seem like a fish out of water in Bethlehem. He is. But if they flee to the Mediterranean Sea, he'll be great aid.

Black Manta is pretty evil (at least by early origin stories), so he is there for redemption.

The third new figure, Green Lantern, isn't there. He is still "Mint on Card." Not that it is worth something, I just like the card.

Aquaman may not fit in Bethlehem, but he does tie some of the Nativity figures together. He came with green gloves, or oven mitts. But my cleaners vacuumed up one glove. They also lost Jay Garrick's  Flash helmet (Jay is between Aquaman and Black Manta, next to a nearly invisible Space Ghost, who is doing his talk show, Space Ghost Coast to Coast, live on location, bringing needed attention to the birth. Think Herod would have tried anything with cameras rolling?). Stephen Hawking from The Simpsons (in front of Black Manta) is missing his glasses, but if he is like me, he is thrilled.

In the defense of the cleaners, my room would have tumbleweeds without them.

Batman is brooding there in the back, probably wondering when someone he can hit will show up.

Next to Stephen Hawking is a Playmobil knight from the old days.

Finally, an M&M  Luke Skywalker in honor of the latest Star Wars movie. He reminds me of Claren because she bit off his hand. Unfortunately, it was the wrong hand.

Merry Christmas!

Just a little nap?

I got some abysmal news from the sleep doctor this week: no more naps.

I love naps and don't know how I'll stop. As I write this at 3:30, it is all I can do not to check my eyelids for holes.

He also said I should only use my bed for sleeping, not watching TV. reading or just resting my butt.

I can sit in my recliner, but I can't get into or out of it on my own.

One of my friends said she had no sympathy for me because I know that a nap will keep me from sleeping well at night.

Maybe.

When I got the diagnosis of Friedrich's ataxia, I already knew something was majorly wrong. This was unexpected so maybe worse.

Lots of ills

When I had my heart trouble a few years ago, I went to my regular doctor because the heart medication was making me duper-constipated.

"Every pill has its ill " she said, but the problem is it isn't just pills. A lot of things in my life that I use to survive to the next day also have bad effects.

Pill-wise:

• Baclofen is supposed to arrest my restless legs. It also might make me fall more often,
• Myrbetriq helps my overactive bladder, but several doctors have recently suggested it might be causing gastrointestinal distress.

Otherwise:

• The sleep mask is supposed to improve my sleep. Instead, it keeps me up.
• My braces are supposed to improve my independence by making my transfers better. They do. help transfers. Of course, I can't put them on myself, which means I have less independence.
• I need my chair to get around. It makes me weaker.

I hate that I need all the stuff I need.

No good answers

I am considering starting to take baclofen to try to ease my restless legs, which have been kind of bad for the last three weeks.

I think they have been bad because I haven't been falling asleep well. The more I am lying awake in bed, the more likely I will notice something on my leg, which causes it to jump.

The reason I am not falling asleep is the sleep mask.

I am not at all excited about this medicine. Baclofen has a nasty little issue.

It tends to reduce the rigidity of muscles (the hypertonicity, my awesome PT says).

I use my hypertonicity to lock my legs in place as I transfer.

So it could make me fall more. But sleeping has been a joke. But I'm managing my sleeplessness OK. But I hate it.

Whoops

"Let me wipe the blood off."

These were my nephew's words my sister heard emanating from my room when she came in the house yesterday evening.

What followed was some cleaning of my left eyebrow and a quick huddle with my brother-in-law and Mom about whether I needed stitches (no).

I had slid out of bed onto the floor, so I saw my nephew watching TV and called him to move my chair. I figured by the time he did that, my sister would be back and they could use the lift to get me back to my chair.

I didn't count on my stupid body just flopping over and my glasses cutting my eyebrow.

My nephew is pretty unflappable for what I put him through.

Torn

Normally, I ride on the street on my way to and from the bike trail. It is only a block. A lane reserved for parking is mostly empty. The sidewalk is narrow and very uneven, and has very steep curb cuts and a utility pole in the center.

The city knows about some of these issues. I documented them for a reporter about four years ago.

I was heading home earlier today, having left the trail and turned right, and this car stops on the other side of the street. I see a woman running across the street toward me, and I wonder what's up.

She asks something I didn't hear, then again asks if I was trying to get to the trail.

I tell her no, and she says, oh, because I saw it was closed off. Actually, just a trail detour was closed, but I didn't say anything.

Then she says, so are you just going to go back the other way on the trail?

Again, I say no, and I add, I am going home.

Where is your house? she asks.

I point and say, up there, then because I realize what is happening, I say, I'm fine.

She asks, you're OK? and gives a OK signal, then leaves when I nod.

I dearly love the tendency of certain human beings to help one another. I hate that people in a wheelchair are assumed, with no evidence, to be mentally disabled.

Insurance and wheelchair -- what's worse?

In early November, I noticed the on-off switch on my chair was sticking.

Not much I could do about it, so I just went about my business. I didn't think I had spilled something in the switch, but that's what I hoped.

After about a week, it got so hard that I was sure something was going to break, so we called my provider. They put in a work order, which mens they fax something to my doctor to authorize the repair.

At this point, my doctor and provider do a fun little song and dance. I use present tense  because it happens just about every time. Nothing happens, so we call the provider. The provider says, We faxed it. My doctor says, We never got it. I have the provider fax again. The doctor's office gets it, but now they have to put it in my doctor's box for a signature.

Signature received, the provider then sends it off to the insurer for preauthorization.

The whole process took two weeks by which time the switch was much better.

The Wednesday before Thanksgiving a technician came out, fiddled with it for a while, and said he could not do much more for fear of cracking the glass on the controller.

The switch is bad again.

God, I hate this wheelchair and insurance.

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.

The boy who fell too much

I went to the wheelchair stall at work this morning, and as I was sitting down, my pants got stuck.

It took me several tries to get them down, and I must have been grunting or making noise of some kind.

I say this because after I was sitting down, I heard, "Matt. Are you all right?"

One step up, 40 million steps back

Starting last Friday, I started wearing my sleep mark for 6-8 hours a night. I thought I had turned a corner.

Then on Wednesday, I didn't wear it four hours, and last night I wore it less than one.

But I don't have time to consider why the sleep mask is killing me because another streak started, this one quite troubling.

My incontinence has raised its nasty head each day this week.

I had been wearing long pants, so it was just mechanically hard to deal with the extra material (although I do at work). But shorts aren't always the answer. Today, I was unable to get to the bathroom because a foot slid off the footplate and got painfully wedged between it and a wheel.

A lot of the problems seem to be just bad coincidences, but I am not sure why they are all happening this  week. And I hope I have found the right doc, but she had no appointments till December.

My headshrinker says moving back and forth is still better than sideways because at least you are moving.

I disagree.

'Amazingly well'?

After discussing failures of my heart, lungs, diaphragm, bladder, stomach, skin and mind, my doctor said I am doing "amazingly well."

My doctor is, I think, a realist.

I don't feel "amazingly well" (see opening phrase).

I am not going to seek a second opinion, but I feel more like I am just hanging on, sometimes just barely.

Me and Fantine

I dreamed a dream last night.

I can't remember most of it now, just a part where a doctor told me it was good I was taking a pill because I'd get used to it. But I remembered it all when I woke up.

I don't dream, haven't in years. I suspect it is because as one of the sleep doctors told me, I'm not going into REM sleep.

I did last night, though. I assume it was because I wore the sleep mask all night.

Yay!

It wasn't perfect. I had to stay up late. I am tired. But I did it.

Wheelchair stalls are for wheelchair users, really

A few months ago, I emailed the gent at work who uses the wheelchair stay to change into workout clothes each day.

Even though you ask me, I wrote, my disability is such that I cannot tell from minute to minute when I will need to go to the bathroom. Therefore, asking me is pointless, so please stop using the stall.

After I sent it, I felt three emotions.

I was proud I stood up for myself, although I was annoyed it took me who long. I was also annoyed because this guy should know better. And I was annoyed that I have Friedreich's ataxia and its plethora of bodily failures. Lastly, I was embarrassed I had to share one of those bodily failures with a co-worker to get hm not to do something he should not do anyway.

But it worked.

Until recently.

Once, he overheard my boss and I planning a meeting, so he came over and said, Since you'll be in a meeting, I'm going to use the stall to change. Another time, he saw me leaving the stall and said, Can I use it then?

Pretty clearly, he didn't get it. And I am quite certain he uses the stall when I am not in. I get that I am the only gut in chair, but that doesn't mean it's OK. He has no business using a wheelchair stall.

He came up to me today and said, Mind if I use the wheelchair stall, five minutes?

I looked at him and replied, Didn't I send you that email?

A long time ago, he answered.

I fought the urge to say, "Not cured yet, dude!" I merely said the "one minute to the next" thing.

He said OK and came back all changed and said, I just thought five minutes would be OK.

Again, I resisted an urge to yell, "MINUTE BY MINUTE," and didn't really respond.

Maybe my sister needs to talk to him. My work sister is itching to.

'Hopeless hope'

Yesterday I got an email from the Friedreich’s Ataxia Research Alliance announcing positive results in a drug study and saying the drugmaker is going to submit the drug for approval. That would make it the first approved therapy for FA.

I spent much of last night trying to figure out how I felt.

To be clear, I wasn't offended by the idea of a treatment. The sooner we can eradicate FA is still too late for me. And MOXIe is not a cure by any stretch. It is supposed to slow the disease's progression.

And who knows if or when it gets approved? Or if it would be priced out of my reach? The positive results don't seem that earthshakingly awesome, either.

But ...

I have said that I could survive if I didn't get worse (I don't think I have made this claim recently as I have gotten worse).

I don't like being hopeful but how can I help it?

P.S.: Reynolds Price had the idea of hopeless hope.

Sleep apnea is winning

I have written before about how more than one disability causes issues. Like needing captioning and a wheelchair in movies. A  captioning pane doesn't sit at the right height, so you can read the captions or watch the movie, not both at once.

Sleep apnea and coordination issues is another.

If I ask Mom or my sister to put the mask on before they leave or go to bed, it tends to wake me. I have to put it on when I am nearly falling asleep.

It takes me a minimum of five minutes to get it over my head and attach the straps. I can't really adjust anything, which luckily you aren't really supposed to have to.

But that is the problem lately: leaks. I fiddle with it and try to fix it. Sometimes it works.

And sometimes i just wind up disconnecting the mask from the air, which I can't fix.

Being disabled is freaking awesome.

Closing doors

Perhaps this is a silly pet peeve, but I hate when people in front of me by more than a step hit the automatic door button for me and just keep going.

If I trail them by a few steps, there is a fair chance the door will close on me, especially if my chair gets stuck in the doorway, a not unusual occurrence.

So normally, I wait till the door starts to shut and hit the button myself.

Last week, though, a guy hit the button for me and watched me and the door. I went through since he would have been able to hit the button again or hold the door.

I made it through fine.

There are two doors to get out of my building, though, so I hit the second button, and the door opened. It then closed right on me.

I was half in, half out. The door was wedged behind one of my little wheels, so it wouldn't open more and I couldn't back up.

Eventually, a co-worker yanked the door open.

I am John the Conqueror root

For a family who spends their weekends at hockey rinks, lacrosse and soccer fields and basketball gyms, my sister's family is sadly not superstitious.

I fell getting into bed yesterday. My niece was the only one around, and she helped me, although I know I was exasperating her.

Her team then went on to win that night and this morning.

But no one liked my offer to fall before every game.

I am so under appreciated.

Matty the master angler

When my uncle retired from our agency a few years ago, I wrote a retirement notice, which included a line that he'd have time now to take me fishing.

I was totally serious about wanting to go fishing, but I knew it wouldn't be an easy task, so I didn't really expect anything.

But this summer, my uncle started planning, and yesterday Fame, Mom and I met my uncle and one of his sons, my godfather and godson, for some rockfish fishing on the Rappahannock River.

Before we even got on the boat, there was an issue: It was real windy, so rockfish were out. But perch, catfish, smallmouth bass and snakeheads were possible.

The first step was just getting me to the boat: My chair got stuck in the gravel driveway. My uncle, cousin and someone from the marina pulled it free and guided me backward on the dock.

Once at the boat, I stood up and hugged my uncle, while the others put my cushion onto my manual chair, which was on the boat. Then they got me on it.

Just riding in the boat was awesome. I could hardly stop smiling. Mom and my cousin held my chair down because it was really bumpy.

The first few spots we tried offered nothing, but just holding a rod after 25 years was so great.

Then we stopped in some shade near the shore to have lunch. Apparently, the fish agreed it was lunchtime.

My cousin got a catfish. Something was nibbling at my line, too, and I pulled up a catfish, too. Maybe I should call it a kitten-fish, given that it was about three inches long.

Then I hooked a white perch and two more catfish. I say "I," but my uncle and cousin baited and cast for me. We set them all free, even the good-size catfish my cousin caught. Then we came home.

I was kind of surprised how great it was, and both my uncle and cousin said we'd do it again. I'm ready.

The Lone Ranger did not have sleep apnea

I am not sure where to turn as far as wearing a sleep mask goes.

On Saturday, I will have had it a month. The most I have worn it is two hours a night. Far less than needed.

When I put it on, it usually jolts me awake, so I am up till midnight or 1 pretty regularly. And that's not mentioning that I stay up too late anyway in the hope that I will be able to fall asleep with the mask on.

I actually can put it on myself, but it takes 10 minutes, which is great fun when exhausted.

Sometimes, I freak out, but that happens less frequently now. Mostly, it leaks air, and I can't deal with it.

I'm on my third style of mask, and I like this one best. But if I try to rest the side of my head on the pillow, as I have done forever, it leaks.

I am just worried that if someone asks, "Who was that masked man?" The answer will clearly be "not I."

More than sleep

A big reason I did the sleep study, and am trying to use the Bi-pap is the promise of no longer being exhausted from the moment I get up until I go to bed again.

Maybe, I thought, I wouldn't need to nap each afternoon. An extra 10-15 hours a week. I dared to dream.

The problem is that my nap also keep my my rear from being sore.

Maybe it is a good thing I am failing at using the Bi-pap.

Nothing unusual

I have decided that I'd like to bury my face in someone's shoulder and weep buckets.

There is nothing unusual going on,  and perhaps that's the problem.

I told the PT students how exhausting it is to have Friedreich's ataxia because every single thing requires advance thinking. If you don't, events like Sunday's happen.

It is no wonder I am having trouble getting used to a sleep mask. They tell me not to think about the fact I have a mask on. I am bruised and bloodied by my experiences of not thinking.

Don't worry, I won't cry on someone's shoulder. That's awkward unless you are standing.

Ambulance ride

The first time I rode in the back of an ambulance was my second year of college. I flipped a friend's car on Route 29 and we went to the hospital sirens blaring. I was fine, but that trip started me on my fun-filled neurological trip that really hasn't ended.

Shortly after I got Claren and before I wore my seatbelt regularly, I took another trip. She pulled me out of my chair and I broke my collarbone. It hurt too bad to get in the van we had then, which was rampless, so we called an ambulance. No sirens this  time.

The third time was today. There were sirens.

I went a little off the road on my walk. I tried to back up, but my wheels started spinning. So I went forward. Dumb.

It was down a slope, and I didn't go straight down, so momentum meant I tipped over into some bushes.

I was OK, but my left arm was trapped under the chair and hurt like the dickens. It was stuck, too, and I started panicking. Then I relaxed, undid my seatbelt and began thrashing about with my right arm to grab a branch that would help me pull free.

I didn't free it but loosened it enough so it didn't hurt too bad. Then I started yelling. "Help." "Help." I kept yelling until I heard a voice.

I think his daughter saw me go down, so this guy came over, moved my chair a bit, called EMS, called Mom, and he and a woman waited till the ambulance came.

I told the ambulance guy I couldn't move before I realized what I was saying, so  quickly added, without my chair.

I don't think they were busy, but the hospital was slow. My sister came as Mom and I knew she would.

I seem to be OK, although my blood pressure in the ambulance was 77/33.

At one point, I apologized to my sister for ruining her afternoon.

Her response: "I got you, Matty."

A lot of people do.

Back to School, Part II

I visited my favorite physical therapy grad school today to tell my story and show them my moves, like when I transferred to the mat and started to pull my shorts down. It's not easy to do.

I enjoy it. I get to talk about my favorite subject: me, and I get free PT.

No, actually it is about showing students a little of what someone with Friedreich's ataxia goes through on a daily basis. Maybe they had an idea.

They probably won't treat me (except the student already working with me) and maybe not FA for too much longer (not to be too optimistic), but there were still things they can use, I hope.

I think if I go back (and, of course I will if the teachers want), I will tell them at the outset that just like Steve Seagal, I am hard to kill. They'd have to look him up probably, but I want them to feel a little more at ease working with me. Only two or three wanted to try some PT on me.

And I'll leash Fame to my chair. She knows she needs to be good but tried her darnedest to get someone else to pet her. She was a hit, even if they did their best to ignore her.

It's fun. I like talking to classes. Part I.

Word problems

I have a problem with the band Dire Straits and St. Matthew (or Jesus).

It isn't exactly the same, but it seems awful similar.

In the tune "Why Worry," Mark Knopfler and the boys sing, "Why worry? There should be laughter after pain. There should be sunshine after rain."

And they'd be right if should meant will. Instead, I am left adding, "but there won't be" after those two sentences.

St. Matthew writes, "Blessed are they who mourn: for they shall be comforted."

He at least says it will happen, just not when. I am thinking those who mourn may have to wait till they are dead, and I would guess that the mourners don't really care (not that I know any).

I like both song and sermon, but ...

Gotta be the shoes

The weekend a few weeks ago when my shoes kept coming off was the last straw. Surely, I thought, I could find high tops I could wear.

I remembered these shoes one of my older sisters had showed me. They zipped. But that isn't a good enough explanation. The whole top zips, as you can see.

I was dubious they would work with my braces because my braces have a clip on the laces, and I wasn't sure how we'd get them on.

But I was so annoyed with the braces, I ordered a pair. (the ones pictured).

There are issues. The braces don't love the soles, and somehow work their way off the soles. But I like the shoes more than the braces, so the braces best come around.

Back to my old, boring keyboard

The great keyboard experiment is over.

In March, I went to see an assistive-technology specialist who recommended a big keyboard with a keyboard.

I wasn't sure, but I figured she was the expert, so I bought one and regretted it pretty quick.

I kept using a regular keyboard when I teleworked but used the big one for all my homework. For five months. I mean, the awesome colors alone demanded a serious test.

Last weekend, I was ready for a test. I typed as much of "Born to Run" as possible in 30 seconds.

Regular keyboard: "In the day we sweat it out on the street of a runway ..."

Big one: "In the day we swat it out on the ..."

I gave the big one away today to some second-grader who will give it a good home.

My poor health

I got in trouble the other day when taking a survey for Friedreich's ataxia, I said my overall health was a 4 on a scale of 1-10, where 1 is near death and 10 is godlike.

Mom, who was helping me fill out the survey, disagreed. My sister thought I was stupid.

Frankly, I thought I might have ranked myself too high.

I have FA. FA has screwed up my:

• heart
• ears
• bladder
• GI system
• swallowing
• mind (depression)
• and on and on.

I don't see how anyone with FA could be higher than a 5, so considering that my health is great: a 4 out of 5.

Of mice and men and Friedrich's ataxia

Back when I was a bit more optimistic about Friedrich's ataxia and read  about it religiously,  I read a lot about the mouse model.

These were not about Anatole posing for a painting but about something scientists had learned from a mouse they gave FA. The study of FA, it  turns out, seems to owe a lot to mice.

But even mice have their limits.

Mice are not humans, or humans are not mice. I heard both a number of times yesterday at the Children's Hospital of Philadelphia, as in, this drug does wonders for mice with FA, but humans aren't mice.

Nevertheless, if the drugs go to trial, I'll be there, letting them dose me up. I do wish I was Anatole, though.

Manic Sunday

This Sunday was not my fun day.

I was getting ready to transfer to the toilet when one of my braces fell off again. It was my once-trusty right brace.

My nephew wasn't around, so I transferred myself. Actually, I just had to go.

The transfer went fine, although the urgency I felt was an illusion, and I hate going through the transfer hassle for no reason. The only thing I achieved was somehow leaking, so I needed to change.

I spent  most of the day on the back porch reading comic books. I would come in from time to time to use a urinal whether I had to go or not because regulation helps a bit unless ...

You knock your  urinal on the floor, upon which you have to go really bad.

So I stood up to try to get to the toilet or at least keep my wheelchair cushion dry.

The cushion stayed dry, but I peed all over the floor.

I then called my sister, and because talking and standing is apparently too hard, I feel into the pee.

Later, upon getting out of bed, my legs buckled and I was holding on but couldn't reach anything.

Stupidly, I let go and crashed into the floor. My Uggs luckily  caught my head.

Finally, I forgot my chest strap when drinking tea at my computer.The result: a cough an d tea everywhere.

It was awesome.

Blame the braces

My nephew has helped me in and out of the shower, when I had a bloody head and when I was on the floor.

Today he helped me to the toilet.

Man, his therapist is going to have so much to work with.

My braces were coming off all morning, and one came off as I was getting on the toilet.

No one else was around. I needed to go. So it was an easy choice.

But I still feel bad for scarring my nephew.

My (mostly) beautiful butt

Not to brag, but on Tuesday,

• I had multiple women looking at my butt.
• One even took photos.
• Another told me what good shape it was in.

Granted

• They were all medical professionals.
• The photos documented my issues.
• The person was talking about my skin being in good shape.

Without my fantasy, it would not be easy to write cheerfully about a visit to a wound clinic.

They didn't find much, but they did find a few things I need to take care of.

It isn't my wheelchair cushion, which I was worried about. The wheelchair rep came Wednesday and did a pressure mapping, which showed the cushion is doing the right stuff.

But something is up.

Stressed

A friend of mine asked me after I wrote off one of my ER visits to stress: Are you stressed?

On the one hand, I was and am pretty proud that it is not obvious.

On the other, I wanted to cry, Hell yes.

No part of my life is stress-free, and much is stressful.

The latest: Tomorrow I go to a wound clinic because I found another sore on my butt.

Sores on one's butt are kind of the kiss of death for wheelchair users since we are always sitting.

I am just tired.

Full bathroom

I sat back on the toilet other loudly several times at work Monday. Not vocally, but noisily.

I half expected the person in the stall next to me to ask if I needed help, but he didn't. Then he left, and I tried again.

This time I didn't sit back heavily. I tipped forward. I was on my tiptoes, squatting, and holding on with both hands.

I tried several times to get back to the toilet and was so close, but I couldn't do it.

I knew I'd need to let myself down to the floor to be able to use my watch to get help, so I did.

At this point, I was half in the stall, my naked legs, and half out, my chest and head. The problem was  I couldn't reach my watch to activate Siri.

As I tried to roll over to be on my back, I realized I was stuck. My hips were wedged under the stall barrier.

Panic was rising, but I relaxed and rolled.

At this point, a deaf co-worker came in. Through hand signals, we determined I was OK and he should get help. I also called a friend for help.

Shortly after, my friend came in with someone he grabbed to help. The deaf guy came back with another guy,  and two other guys showed up, maybe just to use the bathroom.

First, they got my chair out of the stall, then my friend pulled up my pants, then three others gently slid me out and put me in my chair, then one of them put my shoes on because they had fallen off.

Assured I was OK, they left, and I went and did some work.

Sad

As I am sure you must realize by my lack posting, things are crappy (except for yesterday, when I was walking with a friend).

I am sleeping poorly, not a sleep apnea thing, I just can't fall asleep.

The apnea machine is being approved by insurance because clearly a company knows better than my doctor if I need one.

The sore on my butt is no worse but not better.

The incontinence medicine I am taking is crazy expensive and doesn't work as well as I hoped.

I fell in the bathroom at work, which is a funny story. But I Don't feel funny.

I am just sad.

Not liking these odds

Ever since we buried my uncle last week, I have been thinking who in my family will die next.

I limited it to people I was related to by blood.

I think I might win, by which I mean I might lose.

Then, this weekend I developed a tiny sore from sitting.

I don't see this as proof of my demise. I do see it as more proof of a failing body.

Please be scared

A friend had a nice idea when I told her the sleep mask and marine had to first go through insurance. "Maybe they'll be scared of you."

Not me, of course, but my sister.

I hope so. In the past seven days, I have set well once, and well for me still means crappy.

Fighting Matty's battles

Sometimes, I think that the only thing my sister enjoys more than giving me grief is turning her righteous fists of fury against those who screw me.

I realize it is more just jerks in general, but this is my blog and it's as life should be -- all about me.

On Tuesday, after hearing the insurer was going to take two weeks to approve my chair repair, she got involved. Mom had been doing the calling, and did everything possible.

Before she called the insurer, she called our Congressman and opened and inquiry. (Two older siblings suggested that.)

Then she called the insurer, and she told it about the inquiry and that if the motor died or caught fire someone was going to be held accountable.

The next morning Mom got a call that everything was approved

Mom called the wheelchair company, which said the replacement motor would take two weeks to get there.

Today, the wheelchair company called and is coming Friday to put on my new motor.

Everyone should have a sister like mine.

Too much

My sister told me that many of her first-graders struggle before and after their birthday and thinks maybe it is the same for me.

Mom suspects my sadness is related to my broken wheelchair.

Both are contributing although that means that I have the maturity of a first-grader. But my problem is I can overcome one thing and a million more are waiting.

What works

When I am working with my PT student, he asks me before transfers: Where does your head go? The opposite way I am transferring, I tell him.

When I see my awesome PT, she always reminds pre-transfer to make sure my heels are behind my knees.

Both are good ideas, but they don't always helpmeet. Sometimes I find them downright dangerous.

I find myself struggling between what is proper technique and what actually works for me, at least mostly.

For instance, when I put my left heel behind my knee, my foot tends to slide. This is bad.

I am confident they'd both say do what works, but their ideas might keep me  doing what I need to longer.

Not feeling very insured

I am  on day 10 with a  bad wheelchair motor.

The technician finally came last week, listened to my problem, then said, I'll order you a new motor.

That hasn't happened, though, because my insurer requires a doctor's note, as it did just to send out the technician, and my doctor's fax machine is apparently misbehaving and the office has not got the request from the wheelchair company for the note.

To make matters worse, really, it's possible, the wheelchair company refuses to send the request by secure email,  which the doctor suggested. Because the important thing is not that you have a client afraid his will die or catch fire, it is that you are right and should prove it in a pissing contest with a doctor's office.

This isn't my only insurance issue lately, either.

Preapproval is ridiculous.

My doctor orders a sleep study. Nearly a month later, we call to see why it hasn't been scheduled. We're waiting for he insurer to approve it.

I finally find an incontinence medicine that works pretty well. My urologist likes it, too, and prescribes it.  Here is what I was told: "Needs prior authorization. This drug will not be covered until you have tried other medications. Please consult your doctor."

I did consult him and he recommended the new drug.

Is it any wonder people want to overhaul the insurance and medical industries?

Heart failure doc to Matty: You're dying

To be fair, he added, we all are. A comedian!

Me in particular, he said, you're not perfect, but doing OK.

One's heart, apparently, is not very efficient. I have an ejection fraction of 45%. This is just mildly bad because the normal percentage of blood ejected from the heart is in the range of 50-60%.

So my heart does suck, but just a bit, and while it may get worse, we are taking steps to help it.

I am starting a beta blocker, which he seemed to believe may help, not just with the symptoms of a fast heart rate but with my overall heart strength.

He also was strongly in favor of the sleep mask.

He wanted me too keep exercising, just not super-strenuously.

Finally, he wanted me to upgrade my Apple watch.

Taking up the mask

Last night, I woke up about 2 and my mouth was really dry. But I couldn't reach my water bottle.

Unbidden, Fame began barking, then howling. My sister came down to see what on earth was happening.

I got my water.

My sister refuses to believe Fame and I are that in sync. Mainly because I was 3.6 miles away at the VHC Sleep Lab testing a bi-pap mask.

As she usually is, she  is probably right. Plus, I owe her because she stayed in my room with Fame to calm her down.

It is true, though, that my water issue and Fame's barking happened at roughly the same time.

The big takeaway from my night is that the mask was no fun. It was hard to relax. I did it, though. I can do this. And with my canine mind meld, I may be unstoppable.

Stopped

Insurance companies are concerned about fraud. I am sympathetic.

But making someone whose wheelchair you purchased, meaning you were confident it wasn't fraud, get authorization from a doctor and yourself before allowing a repair seems less about fraud and more about trying to make things stupidly hard.

And if I were such an awesome fraudster, why would this stop me?

If, however, I were someone who relies on his chair to get around, it would totally stop me.

An uncle of firsts

We held part one of my uncle’s funeral yesterday. Friends and family gathered to tell stories.

It was good to hear them, well, read them. We bought in a captioner for me and my brother.

As I listened, I wanted to talk. I didn’t, of course. Even though it is my job, I am not much of a communicator, especially speaking. Also, I am not sure I’d have been able to get my words out without crying.

I wouldn’t have told them about how at the dinner table one night, he put my finger in a nutcracker and slowly started squeezing. I laughed until it hurt so bad I started crying and could not tell him to stop.

I also would not have told them he got my little sister to take a swig of vinegar, although I wish someone had told that story.

No, here is what I would have said:




For me, XXX was an uncle of firsts.

He was the first person I knew who had a dog (Doobie) and the first to raise puppies (with the crazy awesome Plott hound Peaches, the daughter of Bad Leroy).

He was the first, and still only, person to give me a ride on a motorcycle.

He took me to my first baseball game. The Orioles beat the Blue Jays in the 12th inning on a Doug DeCinces homer. I was 9, and somehow got up the nerve to ask a ball girl for a ball. I got one.

He also took me on my first fishing trip (not my first time fishing). It went poorly: no fish, no nibbles even, I fell in the freezing water then burned my hand on a woodstove. But he handled it all.

He taught me all I know about fireworks.

There’s many more firsts: He bought me my first aluminum bat, he was the first person I knew with tattoos or who sometimes slept in a hammock, he and his brother introduced me to the blues.

All three of my uncles (and countless others) helped me become the person I am. One wrote a letter of recommendation to my colleges. One introduced me to Canine Companions for Independence and a good friend. XXX was different.

He lived next to us with Gram, or behind us in his Airstream trailer, for pretty much my entire youth, so I saw him daily. I saw him act with kindness regularly. In this, I am lucky.

FA loses

A friend was taking about celebrating little victories, and logically I agree, especially in situations like mine when short of an act of God, a big victory is pretty unlikely.

The problem is, emotionally, I am quite bad at taking small victories. The big crap overwhelms the little win. Friedreich's ataxia pretty much overshadows almost everything. It's the New England Patriots of crap.

I need to do better, not weigh everything against FA.

FA overwhelms everything but friends (and family), but they aren't little victories.

Heart hasn't failed yet

I got a good report from my primary care doctor on what the cardiologist said.

She more or less said the cardiologist was probably preparing for the almost inevitable heart decline that accompanies Friedreich's ataxia.

She said I could still ride, just to be aware my heartrate might spike.

She even suggested I get an Apple Watch that takes EKGs, so I know if the heart rate sis Afib-ish. Like I need an excuse to upgradE, but now it is medically directed!

Heart Failure

I haven't written in a week because every day something seemed to happen that sapped me and left me wanting to curl up in a fetal position in bed. I didn't but also didn't write.

Then came yesterday.

When I had told my cardiologist about my latest ER trip, he seemed to think it normal. For some reason, he thinks I am out of shape. I am confident I am not.

I asked him yesterday if it was OK to bike.

He responded with a long email with several points. This is the one I latch onto: He wants me to see the Advanced Heart Failure team of cardiologists at a local hospital.

I find myself wanting to sing, "Ob-La-Di, Ob-La-Da," except life doesn't go on when your heart fails.

I am not sure why I struggle so much when I am screwed.

Pragmatic

In high school, a teacher who knew me and my family, referred to me as pragmatic. It wasn't a compliment.

It may have been related to my belief then that people protesting nuclear arms on a train track are kind of asking for a bloody accident.

I have been thinking about being pragmatic lately with regard to a sleep apnea mask and diet.

I would like two think these will solve an awful lot of problem: the mask solving my tiredness, inability to sleep, restless legs and my need to nap, which will give me back hours of my life. The diet will cure  all stomach woes and my lack of energy.

But what I really think is that those are pipe dreams.

Sleeping without a T-437 Safety Command Console

I have sleep apnea. It has been quite minor, and one of the reasons I bought an adjustable bed was to further minimize it.

I took a at-home sleep study last month to confirm that and met with a doctor the other day to go over the results. But before I saw him, I started getting emails every day saying the test results were on the portal and to look at them.

The doctor would explain the results, so I tried to ignore he emails.  But they were persistent.

Finally, I did look, mainly to stop the emails.

My sleep apnea had become severe.

The doctor was very pleasant and informed, and I am going to go to a sleep lab to try masks. They said they are better now.

But this is what I expected (the doctor would be the guy from Oak Ridge):

Abnormal normal

When I was 9 or 10, I ran around the house, swung off a branch in the front yard, fell on my butt, thought it was fun and did it again.

The second time, I fell on my arm and broke it.

This was on Father's Day. I returned to the ER this Father's Day.

I went for a short bike ride, and seven hours later, my heart rate was still racing and I was out of breath.

They found nothing, and in three hours I was OK, so they sent me home.

My sister suggested that maybe this is the new normal.

I emailed my cardiologist and he said that it's pretty unremarkable given my body's failings.

In other words, the abnormal new normal.

My kingdom for a PopTart

I am about one week into a two-week course of meds and a new diet. I seem to alternate between starving and nauseated.

My stomach has not been working right for a while, so I had a test that showed issues (nothing deadly). The diet and drugs are supposed to fix things.

I hope so. I really miss carbs and sugar and non-berry fruit. And I did not know eggs were so healthy. I am eating multiple eggs a day.

Mostly, I just want a PopTart.

No fun

I left my head-shrinker last week feeling miserable. On the way home, I figured out why.

She was trying to get me to commit to doing something fun, and it was making me frustrated.

Here's why:

I am at all opposed to fun, but just physically, I am struggling to hang on. I've no time or energy for  fun.

Do it yourself

If I were  billionaire, which I wanna be so freakin' bad, I would hire a butler to wait on my every whim, and I would never try to do things myself.

But I am not, and I need so much help I feel the need to do some things on m own rather than bother people all the time.

That's why I have a cut and a bump on my forehead.

I smacked it into the lift this morning, picking up my glasses.

It hurt, but I didn't bother anyone.

Make mine Marvel but not three hours long

Avengers: Endgame came out more than a month ago. I haven't seen it.

I'd like to.

But three hours is an hour longer than my bladder can take. Even two is pressing it.

I'd have to leave midmovie, negotiate a darkened theater and two doors to and from the bathroom. I am not fast, and I would have to pray for no problems.

I think I'll wait for the DVD.

Diddle, Diddle, Dumpling, My Son Matt

I have been wearing the ankle violator most nights and the regular left brace most days I am home, ao the morning I thought let's wear both braces to work.

I am sure you can deduce what happened, but I assure you that you can't guess the extent.

As I stood to transfer to the toilet, my shoe came off.

I managed to sit down and I went to the bathroom with one shoe off and  one shoe on.

Then I tried to get my shoe on.

My foot was in the brace,   so first, I tried to get my shoe on without removing the brace. No go.

Then I tried removing the brace, which involves hiking up my pants leg to undo the brace strap.

I finally got it off, but I still had to put my shoe on.

Keep in mind that I am doing this all one-handed, so I can hold on. When I put it like that, of course I couldn't get my shoe on. And I couldn't.

I tried standing up, but my left foot was sliding.

I am not particularly proud and frequently ask for help, but there is a line. For me, it was calling for someone to shod me while on the toilet.

So I put my left foot on the loose shoe and stood successfully. I had determined not to tempt fate and just pull up my boxers. I'd pull up my jeans once my shoes were on and I could stand safely.

But ...

When  I sat in my chair, the loose shoe flipped into the adjoining stall out of reach.

Somehow  I got my jeans up, then went into the main part of the bathroom, opened the adjoining stall, had Fame get the shoe, and went to put it on.

It was too much, so I took the shoe to a friend. But she had started a position in another office today.

Back at my desk, I got it on and cursed the brace.

Posts everyone

I fell yesterday (Happy Memorial Day to me!).

The particular problems this time were that

• most people were at Mom and Dad's, so I wasn't sure who would hear Fame, and
• I was wearing both braces, which means neither leg was free to fall, which sounds like a good thing. It can be, when it helps you stand, but when one leg is underneath you and one is behind a superpole,  it just stretches things.

Once I managed to pull my leg out from under me, I phoned Mom. She, my sister and niece got me upright again at which point my niece (she thinks she so funny) decided it was like the scenes in Mary Poppins when the cannon goes off. Everyone  has heir jobs. 

Testing pain

Here is how I'd describe the worst medical test I have had, an electromyography or EMG:zElectrodes are attached to your hands or toes,

• A needle is stuck in your forearm or heel area,
• The test giver then manipulate said needle to get it where they want,
• If you flinch during the manipulation, they tell you to relax,
• Eventually, current is passed through you, which sounds bad, but if you survived the manipulation, being shocked is a breeze.

I had a blood test this week that reminded me of the EMG. It tested my blood-oxygen level, so it had to be done in an artery, at the pulse in the wrist.

The nurse warned me it can be really painful for some people but to try not to move because that slows the test down. I said OK, looked away, and she jabbed me.

It hurt but not superbad.

Then she did something, and it hurt pretty bad.

Then she did something else, and it hurt close to superbad.

Then it was fine.

I looked.The vial was empty. The pain was because she was manipulating the needle to try to get it in the artery.We switched arms and finished in seconds.

And everything was fine.

Disengagement

Mom said to me today, You look sadder than usual; anything I should know about?

Leaving aside the "than usual" phrase, I told her it's my hearing.

It makes me want to disengage from groups of people, even people I love. And that's beyond the disengagement of not being able to hear well.

So yeah, I am sad.

I hate when she's right

My sister was yelling ate a few nights ago because I wasn't wearing my chest strap all the time.

I told her constant wearing would weaken my trunk muscles, but she was having none of that.

It won't weaken your trunk muscles, she said. Email your physical therapist, she added. I'll bet you $10 she agrees with me.

I remember my PT telling me not to wear the harness I originally had on the chair for the trunk muscle reason, so I suggested we raise the bet. I then went to email my PT.

My PT's response: Don't worry that wearing the strap will make you weaker. It's better than reading your face, dummy. (The dummy was in my  head.)

Now I owe my sister $10.

Testing

Last week, Mom and I went to NIH to talk to a class in genetics counseling. We went in 2017, too. The teacher was my genetics counselor when I was diagnosed with Friedreich's ataxia.

I enjoy going both to talk about myself and to learn something.

This time I learned that I am a big proponent of genetic testing for FA.

I argued that I didn't think people should bring someone with FA into the world, not because people with FA aren't worth it. Let's face it, I rock, and I am proud of my awesomeness (my brother's too).

But it is beyond hard. Every day.

No one should have to deal with it.

Too many straws

One day 10 or 15 years ago, the stand on my newest action figure, Moishe the Wild Thing, didn't fit. I kind of lost it.

That's the first time I really knew what it meant to be the camel, whose back was broken by one last straw.

It has happened since, to be sure, and the straws are building up these days.

• Mom is not recovered yet. Every time  close my eyes, I see the incident.
• People in my extended family are hurting.
• I got a keyboard recommended by an assistive technology specialist, and it is not making me type faster.
• Work is kind of overwhelming.
• A friend who said they would text didn't.

Chest-protected

I got a chest strap today that is the independent-use one I asked my wheelchair salesman for months ago. The world of durable medical goods is not known for speed.

It buckles in the middle of my chest, and it seems pretty easy to do.

Much to the chagrin of a certain person I live with, I won't wear it all the time. That would weaken my already wimpy trunk.

But I will wear it when food or drink is involved.

I think it'll help.

My life

The morning, I sat down so hard on the toilet that it took my breath away.

A few days ago, I coughed at my desk. Just a little cough but enough to send my face into the desk, unfortunately right where the bumper ended. I put my hand to my face, and it came away bloody.

No matter how much I exercise or try to improve my situation, I am still going to cough and smack my desk or sit too hard on the toilet.

It is unlikely to get better but very likely get worse.

I'm the truck

I watched episodes of The Last Kingdom last night till after 1. It wasn't that it was riveting (it is). I just didn't want to close my eyes, afraid of what I'd see.

But after the episode where someone killed someone (spoiler-free!), I had to sleep, so I shut my eyes.

Unbidden, unwanted but expected, pictures popped in front of me from earlier that evening: Mom in front of my chair, me unable to stop, her getting her legs caught and falling, her on the ground with my chair on her leg, neighbors rushing over, an SUV stopping to help, one neighbor running back into his house for paper towels, the paper towels getting bloody, the guy from the SUV feeling her foot, a cut on a temple, Mom holding her side. They went on and cycled back again.

 I broke Mom. (X-rays say I just bruised her.)

Now, my sister has to help me like Mom does, at least for today.

My sister came into my room this morning and told me Mom was Ok but felt like she'd been hit by a truck.

Mom joked a while back that we'd be in trouble if she ever got hit by a truck.

I never thought I'd be the truck.

Ankle violator

To get my teeth ready for braces (or brackets, as Dr. Ralph called them), I had years of appliances: bionators, expanders, whatever. (Autocorrect wanted to make bionators into violators. That, too.)

The new orthotic for my left ankle is like them -- I need it before the original brace does any good.

I wore it last night without a problem ... with that leg. My right leg was jumpy.

We'll see what happens tonight. I am going to wear a sock because it was fitted with one.

No fire

Bubble wrap was invented, according to Google, in 1960. This is good for Dad, his parents or both.

The story goes that when he was little he hid  (I believe in the tub), crinkled something like cellophane and yelled fire. His parents were none too thrilled.

If he had bubble wrap available, they might have killed him, assuming they didn't die from heart attacks.

I was thinking of this story the other day when I got a package wrapped in bubble wrap. I opened it and accidentally dropped the bubble wrap on the floor. Then I accidentally ran over it.

BAM

I almost gave myself a heart attack. I'm glad I was alone.

The tea gods are angry

Earl Gray or perhaps one of the tea animals from Red Rose Tea is gonna get me.

I like drinking tea. but. because I cough when looking up, I tend to gulp it down.

Surely, this defeats the purpose of tea and is going to get Earl after me.

Tired

I was getting ready to transfer back to my chair this morning when I realized I just didn't want to.

Both my braces had stayed on my feet, so that wasn't it.

Because my braces were on, I wasn't apprehensive about transferring (anymore than usual).

I was just tired.

My disability has been pretty prominent in my life for more than 25 years, and that is assuming that we do not think much of my early life was affected.

I eventually did because I had to. But I'm so tired.

ER, it's been too long

It had been months since I had been to the ER -- they could have painted, gotten a whole new crowd of folks that didn't know me or worse the folks could have started to forget  me -- so Monday afternoon saw me back at the ER.

Quick side note: Of all the trips to the ER, Monday afternoon was hands down the busiest. I stayed in the waiting room an hour.

I had gotten a great report Friday from my cardiologist, but Monday morning I had some spells of being out of breath. I took my pulse after the second one and it was a bit high -- 100 bpm.

I called Mom. She called the cardio and came to get me. Then we went in to see them.

They would have sent me home after a fine EKG, but I mentioned that I was feeling a weightiness on my chest. WhOOPS. ER-bound.

Everything was fine there. The worst part was the nurse who didn't remember me.

My cardiologist has me on a heart monitor for two weeks.

My primary care doctor, who has known me about 20 years, prescribed Xanax.

Quick PS: I almost made back-to-back visits because I took a header into some gravel. Fame MuSt have undone my seatbelt when she was on my lap.

Face to face

Whenever this co-worker comes over to talk to me, I think we are in a huddle. She puts her hands on her quads and leans toward me.

I learned why today and knew she is totally the kind of person I want on my team, football or otherwise.

She told me she remembered an article about me where I said how cool it was that former Interior Secretary Sally Jewell had knelt down to talk to me face to face.  So that's what she was doing: talking face to face.

My head hurts

The University of Virginia, my alma mater, won an exiting game last night to claim the college basketball championship. I spent most of morning wanting to cry.

I tentatively decided that it was because college would have been so much better without Friedreich's ataxia or even if I knew what was wrong.

But I didn't have time to solidify that hypothesis because I went to the bathroom, stopped in front of the door to tell Fame to push the button to open the door, but instead coughed.

My trunk lurched forward, and my head whacked the door. My arm hit the joystick, which drove my head farther into the door.

I recovered in time for someone to ask if I was OK.

Then on the way out of the stall, I banged my head into the lock on the side of the door.

I was then fine until lunch when all of a sudden a sneeze came on. I didn't have time to do the chest strap, but I did have time to get clear of my desk ... I thought.

The mark on my forehead suggested I needed together farther back.

I want to believe

“Good for you,” my head-shrinker said when I told her I sometimes see a holistic doctor. "I thought you'd be a skeptic."

I am, I told her, but this guy seems to know his stuff.

That is why I have had Mom spraying magnesium oil on my feet for the past month, a holistic answer to restless legs.

Results are not as awesome as I hoped, Last night, for instance, I was up till after 1 because my left leg would seem to get settles only to jump and disrupt everything, I tried advil, stretching, sitting, exercising, even  standing. nothing worked. I did watch John Oliver, but it wasn't worth it.

I want to be fixed, not like a dog but to have my ills corrected.

Bad words

For Mom's 80th birthday, we made a list of 80 things we love about Mom. One of mine was that when she curses, I know it is bad enough that I can curse, too.

That is where I found myself the other day, and the object of Mom's ire was the braces (of course). She was helping me transfer when I didn't have the braces on, and she preached to the choir of me that I am so much better with the braces that it made her want to say bad words that they still didn't stay on/fit without hurting.

I guess  technically she didn't curse, but close enough.

Braces again

I emailed a report from my podiatrist to the orthotics guy and my physical therapist.

She said the braces seem to be irritating my hammer toes because when my foot is at rest the toes are relaxed but when the braces keeps my foot in a proper places, the toes tighten. The visual she used was holding up her hands with her fingers straight to show the relaxes toes. But when the braces are on, she said, it's like this, squeezing her fingers into a cramped, witch-like hand.

And my hammer toes aren't normal, she said. See how it bends down at the first joint, she said, that's common. But then you have this weird little thing (I really wish I remember the exact words she used) where the tip hyperextends.

Unique!

She gave me a little tube-like bandage to keep the toe straight and told ne they could slice the tendon is that didn't work. The bandage works at the moment.

She also said toward with the orthotics guy.

He didn't email back, but his office called to set up an appointment.

Chest protected

In a move either unprecedented or at least quite rare in Bitter annals, two good posts appear back to back.

I will save the bitterness involved in this one -- there is plenty -- and focus on the end result. Or the intermission. If it were the very end, i might get bitter.

I got a new chest belt and was disappointed to learn that they did not order me the one designed for independent use but rather the one built for someone else to clasp.

The attachment is hard to do, but before that even becomes an issue, one would have to be able to reach the two parts of the belt. I couldn't.

Enter my work sister. She is as wonderful as my other sisters. She is also quite crafty, so she brought in some velcro and a glue gun, and now I can reach both parts.

I am protected!

I'm going to Florida

My family and friends do mitigate the rottenness of life, so rather than talk about how my left brace fell off three times in the first hour and a half of wearing it, I will write about something else.

My 14-year-old nephew and I were talking about his Beach Week for eighth-graders trip at the end of the school year. (OK, not exactly Beach Week. He is going with a science teacher.)

I told him I'd love to go. He said he'd take  me if he could.

I am not sure if he realizes the seriousness of what he said. If I am still alive in 10 years, I'm going to Florida.

Why does it have to be so hard?

My braces cause me pain, but they help me stand and transfer.

I like swimming, but it can cause me to have stomach issues, which are acting up now.

I am tired at night, but my restless often keep me awake.

Today was finally warm enough to say it is spring, but my allergies keep me from really enjoying it.

I like going into the office, but I am have problems getting in more than twice a week.

I could go on, but suffice it to say, I am struggling.

Laughing to keep from crying

So this happened yesterday:

I went to the bathroom before my physical therapy student came. I was having trouble standing -- my foot kept sliding even though I was back in the braces. I wound up sitting back on the toilet, but I slid off.

As I was sliding, I heard velcro tearing. I knew what it was but not why.

All my sweats these days have velcro flies thanks to Mom. The sound was the fly opening.

Once I recovered (that's right because I am tough as nails), I saw the button had popped off my pants. It was too late to change before my PT came, but these sweats have drawstrings.

So I called Mom to come over and tie the drawstring. She did.

But it didn't stay, so she hunted down a safety pin that did work OK...

Until after dinner, when I needed to use the toilet and couldn't lower my pants. I called Mom again. She came over, loosened the sweets and used the lift to put me on the toilet.

She put me back in the chair and left the room for a moment. I was buckling my seatbelt, but ...

I was sitting on the right side of it. I leaned over to grab it and fell onto the floor. Mom came in to find me on the floor, OK but annoyed.

I suggested we wait for my sister to get home, but she didn't like that idea and so we started sliding me into a sitting position. At one point slipped to the floor as well.

Dad joined us, and between the three of us, we got me back into my chair, where I quickly  did the seatbelt.

Toe 'hammers' braces

It is hammer-toes one, braces zero lately.

On Thursday, I gave up wearing the braces because my hammer toe on the right foot hurt and was getting more painful.

I will probably try to wear them again Monday, and I am going to the podiatrist in a week and a half to see what's what. He will probably recommend surgery, which will be fine.

Hammer toes are a issue in our family. I just won the genetic lottery to get all the problems in the family.

Mumble mumble

I speak poorly. No surprise.

But in case I forgot, there was this morning.

A colleague asked why I wouldn't be in the rest of the week. I told him because Fame had to have a tooth pulled (she broke it on a nylabone).

He started going on about me getting my wisdom teeth out. I said, no, Fame, and I thought he got it till he started talking about how I'd be drinking milkshakes for a few days. I stopped correcting him and just agreed.

A little later, I was telling a woman about a study I read about that is her area of expertise. She responded with something unrelated. I tried again. Same unrelated result.

I don't blame them, but it is why I rarely talk.

Heres why

Despite being somewhat treacly, Dire Straits' Why Worry is one of my favorite tunes.

I have never been exactly sure why I don't rate it down there with Don't Worry Be Happy, which my first head-shrinker wanted me to adopt as a motto.

Partly, it's because it's Mark Knopfler and the boys. Partly, it is because it reminds me of my oldest sister and her husband.

Today, as I was listening to a version by Knopfler and Emmylou Harris, I realized why.

First, it's not a command. It's just a suggestion. But mostly it's these lyrics:

There should be laughter after pain
There should be sunshine after rain

Sure, there should. Usually, there isn't (well, there is in the case of rain). Often, more pain or different pain moves in.

That's why you worry.

How sinister

I went back to the braces guy Wednesday. Actually, I am going to call him the orthotics guy. Braces guy makes me think of Dr. Ralph, my old orthodontist.

Anyway, his opinion on why the left brace was not staying on was that it's my fault. My left ankle's, specifically.

It is too tight.

The brace can't hold it in place. It's like a jailbreak, it just busts out.

The answer, he said, was another brace, one I'd were at night.

His explanations make sense, even if they do benefit his company.

April is not the cruelest month

APRIL is the cruellest month, breeding

Lilacs out of the dead land, mixing

Memory and desire, stirring

Dull roots with spring rain.

Winter kept us warm, covering

Earth in forgetful snow, feeding 

A little life with dried tubers.

Apparently, T.S. Eliot was suggesting that April is bad because it gives the hopeless hope, only to leave them still suffering despite the breeding lilacs.  I do not recall this from my high school analysis of The Waste Land.

The poem, even if it doesn't rhyme, does have rhythm, and I have no beef with the argument. It is a  good one. April can suck  as nature shows off its rebirth.

But ...

It should start "April is the second cruelest month." T.S. should also spell "cruelest" correctly.

April has its faults, but it is warm.

March sucks always.

You are weary from a hard winter, and March even tantalizes with warm weather, but then it packs the warmth away and poor brass monkeys are left wander around with their balls frozen off.

Those monkeys would be perfect fits in the Waste Land.

i never forget

It is not as if I can ever forget that I have Friedreich's ataxia.

I wake up, and the first thing I do is use a urinal because my bladder parts don't work right and I can get u and use the toilet.

I go to sleep hoping my restless legs won't keep me up.

Throughout the day, similar thought arise.

My point is: I really don't need any reminders.

Today, I went through some medical papers that hammered it home that I have FA and it is bad.

Bad brace!

The braces were bad today, the left one especially.

It came loose multiple times. I am not sure when I decide that as helpful as they are, it is more dangerous to wear them even though one comes loose a lot than to just give up on them.

I am afraid it is near, though. And that bothers me. It is hard to find tools that help me. it is frustrating to find only to have a technical issue.

I have emailed the braces guy but haven't heard back.

The honeymoon's over, braces

I am still wearing my braces regularly, and they are still helpful. Just today, for instance, they get my legs in a good place when I was transferring in the bathroom and missed the wheelchair seat. Thanks to them, I was able to get on the chair myself.

So yay, braces!

But their enough annoying things that I am not sold.

• I have given up trying to get them on independently. That's kind of a big blow. In telling my PT I would try them, I insisted that the braces be things I could put on myself. But I can't. They require more than I can do. For instance, I cannot get out of bed without shoes on but I cannot put the braces on without pushing my feet into them by standing and I cannot start them when sitting on the edge of my bed.
• The left brace especially comes off my heel several times a day. If I cough and my foot muscles stretch, if the brace nicks the toilet when I am setting up a transfer,  if as I am putting my feet on the footplate, the brace nicks the plate ... The right one comes loose to but not as much. This is extra bad because I have poor feeling in my feet so don't always notice it before I need to transfer.
• This lack of feeling also comes into play with my toes. They can get jammed up in the show more  easily with the braces then before.
• I have hammer toes on both feet that are made worse with the braces.

Ugh, braces!

See?

Be healed

At my previous job, there was a woman who said her preferred superpower was heal ing without anyone knowing she had cured them.

I told her the power was great, but I'd want a billboard saying I heard someone. I am kind of vain, but I wouldn't really want that.

If I could do it, that would be enough.

When someone I love had cancer years ago, I wished I had it, not them. I don't value my life less. I have just seen the crap that I handle and figured I could take on more.

It didn't happen.  I guess that is not an acceptable use of free will.

That hasn't stopped me from asking. I do, and I get mad when my prayer isn't granted.

I know that I can offer things to people fighting a life-changing illness. but there is next to nothing tangible I can contribute.

That is hard.

Mr. Plow

As I sat at my window working, I watched neighbors and relatives shovel snow. I have mentioned before that I miss that (comment #6 made my evening).

After some searching, I found a solution!

How cool would that be? I could quit my job and just be the neighborhood plow. I just need someone to build/buy me one.

Also, snowboarding in a chair. Who knew?

The idea of a person trailing you made me laugh. If I didn't hate the snow so much it might be fun.

My poor face

I am coughing more, and my face is paying the price.

Actually, I am not sure I am coughing more so much as sitting at my desk more, so when I do cough, I hit the bumper on my desk. It does prevent worse injuries but ...

My nose has a Band-Aid Again. It was better, but I coughed and the bumper prevented more injury but still slammed my glasses into my nose.

A few days later I coughed with a cup in my mouth. I put my hands to my mouth, and they came away  bloody. the blood stopped, but my lips HURT.

I hesitate to think what's next.

Dogs' lives

When Claren, my first service dog, was sick and couldn't go to work with me, I was aggravated.

She made my life better and easier, and I knew I'd have to put up with strangers asking where my dog was. Like the day after I broke my collar bone and I left her home because my arm had no strength to hold her leash. I was wearing a sling and someone came up wanting to know if my dog was OK. She didn't care about me apparently.

I could do the stuff Claren did for me, not as easily as she could, but usually without risking life or limb.

When current service dog Fame is sick (as she was today), I am not aggravated, but genuinely upset. She also makes my like better and easier, and people I don't really know ask after her.

But unlike with Claren, there is more risk when I undertake Fame's chores.

It is not the dogs, it is that my body is worse.

i survived, but I don't like my body, have I mentioned?

What if

I went to get my eyes checked today, and it was a fine. But here is the more exciting tale I concocted on my way home:

He tells me I am going blind and there is nothing to do about it. I find a renegade surgeon who operates and gives me Six Million Dollar Man eyes.

The government then starts hunting me because it wants me to kill for it. I go on the run but because I am in a wheelchair, it is on the roll. That could be the series' name.

I find a friend. I hadn't decided whether it would be a butler or love interest. Hollywood would likely demand a love interest, and who am I to argue?

Then I become the leader of a movement. This will need work because saying it now sounds cult-is.

The government has no choice but to kill me, which it does savagely.

At great personal risk, my family uncovers the truth about what happened, and it is plastered across the news.

Here is the last scene: We pan over a quiet cemetery, then come to rest on a fresh dug grave. It then pans down, and goes dark, like you are in the ground or casket. Then an eye opens and you look out the Six Million Dollar Man eyes but just for a second, then roll credits.

Did the surgeon do something to give me l life or is it just my eye still works? This  screams franchise.

Sad and cold

I wish I knew why I wasn't blogging much.

Things aren't awesome. It's not like I have nothing to write about.

I think that partly it is the cold. So that means I am not going to be writing regularly for a while.

And I am just sad.

Staying out of the ER

About 8:10 I decided to go into the office today instead of teleworking ... as long as I didn't spend the evening in the ER.

It was touch and go for a little while.

I went out a little earlier with Mom to go for a walk.

My feet slipped off the footplate on the way down the driveway, and I ran over one pretty bad. It was bent upside down under my chair.

I fell on my lap, and Mom started pushing me up. It took me three or four tries to grunt out, "Move my chair back."

It hurt.

We put ice on it and it didn't get worse.

No ER, I was officebound.

Brace-legs

Growing up I had braces and other orthodontia for years and years, so you would think braces are no big thing for me.

That stuff was in my mouth, and I was a little better-abled (although the fact that I used to successfully string tiny rubber bands between the top and bottom braces is mind-boggling).

Now, though, I am trying out my fourth pair of ankle braces. (Here are some past braces stories.)

The difference this time?

• I like and trust my physical therapist better. She came over today to help me figure out how to use them. So I think I'll have support. My past and current student therapists also think they will help. 
• I see benefits to them. Not invisible one like stretching my calves, which these will do, but ones I SEE: They keep my feet on the footplate. They also help me stand better.

But they are not easy to get on. Not now. I got the right one on in about five minutes and my PT had to help with the left. I'll keep at it. She seems to think that it'll get easier and that I can do it.

I mean I did the rubber bands. This should be easy.

Cut up

I am not sure my nose will ever heal.

Several weeks ago I coughed, sending my nose into an up-close and personal handshake with my desk.

Last week I sneezed at the dinner table, broke my glasses on my iPad and opened up the cut on my nose again.

Today I kept coughing at work and falling into my keyboard.

It has never hurt, but my dashing and debonair looks are taking a hit.

Back in the office

Every time I flew back from vacation to North Carolina when I lived there, the same woman would be in the booth at the long-term parking lot.

She'd ask how my trip was and I'd tell her, but she said she never took vacations because it was too hard to come back to work.

I suspect most of my co-workers would have sympathized with her today. I know I did.

I spent a good part of the day trying to remember what I needed to do and what I had been doing five weeks ago.

I didn't have any issues, butas good as it felt to be back, I keep thinking: What about three weeks from now?