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.