Say what?

I do not hear very well, so I was more or less resigned to not hearing most of the conversation when five of my friends from college came over last night.

I was right. It wasn't until this morning that I learned that the wife of one of the people had gone to the same college my niece goes to now. My sister, who was in another room, told me that story and a few others that she overheard.

What I didn't really realize was that I have developed a trait to understand conversation, and my friend standing next to me was not really ready for it.

When someone says something to me that I don't understand, my first reaction is to time to the person next to me. If it is my or my sister, for instance, they know what I am doing and they translate for me.

My friend, unfortunately, did not know the deal, although she rallied once I said something like, " I didn't hear that."

All in all, it was great fun to see people, some of whom I hadn't seen for years. I do wish I heard more of the stories.

Thank you, Friedreich's ataxia.

Siri cares

The most recent update to Siri, which I installed on my watch a few weeks ago, is not so good at understanding me, but I know her heart is in the right place.

Last night I was trying to call my sister on my watch, so I said “call,” and Siri responded, “ to who?” I am not going to criticize her grammar mistake there. Neither am I going to criticize her inability to understand me when I send my sister's name. Because she heard, “I am lonely,” and she responded, “I'm sorry to hear that. It might help to reach out to someone you trust.”

I'm glad she didn't automatically put me through to a suicide hotline or something. But what a caring soul!

A musical grand slam of a Christmas

 It was a strong year for collectibles in the Matty household. Toys for sure, but I also got back into baseball memorabilia, mostly cards. It was one of my nephews who suggested that they belonged in my Nativity as well. A solid idea.

Starting off from the left, perhaps I should say leading off, is a card of Bob Allison. He was a Washington Senator, which is enough for me to collect the card. But more importantly to me, he founded the  Bob Allison Ataxia Research Center. He did not have Friedreich's ataxia, but he did have an ataxia. That's good enough for me. He was also a pretty solid ball player. 

I read a book recently called the Soul of Baseball. It is about Buck O'Neil, a former Negro leagues player and so much more. That convinced me to find the ball under Bob’s card, so that I would have something related to Buck. I won't pretend to be as optimistic and kind-hearted as he was, but I think I'd like to be.

Rounding out the baseball part of the Nativity is Orioles outfielder Al Bumbry's autograph. This is not new. It’s from my childhood. I have several. You see Al was my favorite player. He was not that great statistics-wise, although he was the 1973 Rookie of the Year. But he could do it all  as far as I was concerned. He had speed, he could hit home runs,  he was a good outfielder, and he served in Vietnam.

As far as what this trio would do for the Nativity: I guess maybe they'd be there to teach Jesus how to play the greatest game of all. They also have bats, so they wouldn't be bad defenders if needed.

Next, we come to the new toys. It the Electric Mayhem from the Muppet Show. At least some of them. Lips, the mumbling horn player, is not available in this set, and Animal was too expensive. But the other four — Floyd, Janice, Zoot (sitting on the windowsill) and Dr. Teeth — are here and we have stand-in drummer. 

Since she lived next door, we decorated her Christmas tree every year. The little drummer boy (to the left of Bob Allison) was the source of more than one argument, as to who got to hang him on the tree. He came to live with me when Gram died, and I have to say he looks more like a drum major than a little drummer boy, but I'm sure he will be up to the task of laying down the rhythm for the Mayhem, who would provide entertainment and soothing lullabies. 

Baby Groot (in the corner) is either a symbol of how much I am loved or how sick I was over the summer. Maybe both. The niece I live with gave it to my sister to bring to my hospital room when I had sepsis. She had made it for me a while ago. It was a huge hit. One of the hospital people took its photo because he was so enamored with it. Groot is just for me.

Santa and the Big Three wrap things up this year. 

Merry Christmas. 

Early morning

 I woke up this morning at 3:39 a.m., but of course I didn't know it was 3:39 a.m. 

I didn't realize it until I retrieved the bag for Fame's pill, which normally brings her to the side of my bed immediately. This time she did not move, so I looked at my watch and saw the real time.

I had, of course, already taking the mask off, and I wasn't about to put it back on.

That ruined my streak of wearing the mask at least six hours a night.

I still can't decide whether the sleep machine is honestly helping me.

I was tired when I woke up but not later in the day, so I suspect not really.

Waking up at 3:39 is probably what made me feel tired.

Work or retire

 A friend of mine is retiring in March. This has set off a long-running debate in my mind about whether I would retire if I were able. 

On the one hand, it would be nice not to work. Not to have required deadlines and stuff like that. It would also be really nice not to have to get up early.

But the other hand weighs in suggesting that I'd be really bored and would miss people even more when I do working remotely. 

That is sort of where I stand on the issue, not to mention that I can't afford to retire.

Perhaps I will just keep working.

Not as independent as I thought

Yesterday what's my sister's birthday, and she and my brother-in-law were out on the ramp to our back door talking to some of her well-wishers when I wanted to go for a walk. So I got myself ready. 

When she came in before I left, she jokingly said something like, oh, so you can put your coat on by yourself. I responded it just takes a while. Like everything in my life. I think that if I had many more hours in the day, and more energy, I could be more independent. But I am not sure what the advantage would be. I guess it would make other people's lives easier. It would make mine harder.

Today, I realized I am full of shit.

I got in the lift to go to the toilet and as I was lowering myself it stopped right as I touched the seat. The lift has two cords attached: One lowers the lift if you lose power, the other turns the power on and off and is a reset switch. What they really do is get tangled up and cause the lift to shut down. That is what happened today.

I reached up and was able to untangle the worst part but not the rest and the list still wouldn't work.

I knew I had to call my brother-in-law, who was working from home today, but as I was reaching up, I started to slide forward.

A quick look showed me that the bidet seat had come unattached and was sliding forward. This is actually not unheard of. The bidet requires you to sit fairly straight and steady. Maybe it's not a great product for those with Friedreich's ataxia, but anyway ...

How to call my brother-in-law when I am holding on to my grab bars with both hands keep from falling. I knew he would not hear Fame barking, so that meant I would have to use my watch.

I tried hey Siri multiple times. I didn't think it would work and it didn't. Siri is not my most reliable friend. Finally I managed to hit the buttons I needed to and my brother-in-law came to help.

He got it untangled, but the lift remote still would not work. After fiddling with the reset to no avail, he lifted me into my chair.

I then called mom to come up because I thought we were gonna have to call the technician. Actually, though, replacing the batteries solved the problem.

And just in case you were wondering, I was extra full of shit after this. My adrenaline kicked in, and I did not have to use the toilet anymore. Also, when I had to type "full of shit," I said, "full of" and wrote the rest. Saying it out loud would have been too weird. 

Hot N cold

 After attending a meeting on teams where several people praised my work , I went to use a urinal. It was then that I almost started to cry. 

Not because anything bad happened when I was going to the bathroom or because I was so tickled with myself, which I am regularly. 

It was more because the latest symptom that I am having — I the loss of temperature regulation — it's just so overwhelming to me. At my desk, my hands and feet are frozen, but the rest of me feels like I am in a sauna. And that's how it was after my meeting. It was just defeating. 

There is not much one can do about this issue. My neurologist did not have any ideas. I mentioned add to my regular doctor, and he was sympathetic but also did not have any ideas. 

Friedreich's ataxia has the most crappy symptoms, and they take so much out of me. I'm just like Katy Perry.

I hate cold, volume 891

 Here is another reason I hate the cold and the need to wear more clothes: The extra clothes catch on things. 

I was near my desk yesterday afternoon and I coughed. Before I knew what was happening, I had leaned over my knees and my sweatshirt hooked the joystick and it started sending me toward the desk. 

I had been standing the night before, so my desk riser was still about six inches up in the air. The result was that my head slid between the riser and the disk itself before I was able to stop the wheelchair 

I thought about trying to get help from my nephew, who is home for Thanksgiving, but I could not reach my watch or phone. 

Eventually I freed myself and was fine. But Gosh I hate cold weather

Side Effect 1

 I had the first side effect from the medicine to treat Friedreich's ataxia. Actually, it is more correct to say I was just made aware of it.

 I went and this week to see my doctor for blood work after two months of the drug. I like my doctor a lot even though he is totally different from the doctor I had for the best 25 years old. 

And that’s not just because he asked me if I wanted to do Coloaguard or “poop in a box. It is just different. 

One way is he got the blood work back to me the very next day. 

It showed that my cholesterol has gone through the roof, a potential problem with this drug. 

The rest of my blood work was okay, though, so that's good, and we will retest the cholesterol in six months to see if I need to go on medicine I lower it. 

It is sort of like what I was talking about with sweatpants and the lift and how I cannot have two simple things. I can't be warm and use the lift easily. 

With this, I can't treat Friedeioch’s ataxia and have half decent cholesterol, apparently. 

It annoys me that one medicine is making me take another. I don't like taking medicine.

Either-or

 I have begun wearing sweatpants on occasion. They keep me warmer than shorts and leggings. Mainly because wind does not blow up shorts when I’m wearing sweats. 

And I  have been able to manage my incontenency. Yea me.

But, as often happens with me, I can be warm or I can use the lift. I can't do both, at least not easily. 

It turns out that sweats tend to get caught in the leg brackets of the lift and keep me from getting in the lift.

I do not have the "be warm or use the lift" issue often, but it is common for a  plan to seemingly work, only to have complications.

Whoops

 It finally happened. 

I woke up on Wednesday night and I could not move my head. 

I thought the sleep mask or its tubing I had gotten caught somehow. But they seemed free. 

As I slowly woke up, I realized that the lift, which I keep on its charging station right above my hea, hand lowered on to me. 

I can't say that it lowered of its own volition, though. 

I have been wearing the lift removed around my neck ever since my legs have gotten really jumpy. That’s because if I need to use the lift to relax my legs when the sleep mask is on, I have to hold the remote and hope I we don't lose track of it. 

I rarely use the lift to travel horizontally when my legs are jumping. I usually just to use it to sit up. 

I managed to get to lift back up, but it was not easy. 

Maybe I should keep it away from my head at night. Life would be much simpler if I didn't have to deal with restless legs. Actually everything related to Frederick's ataxia. 

Not better

One of Mom's friends started using uh sleep machine, and Mom said she would not tell her that it took me three years to get used to my sleep machine. 

This is a good thing. 

For one thing, it took me four or five years to get used to it. And yes , I know I am probably jinxing myself by saying I got used to it. 

The bigger problem is it since the summer I have been wearing my sleep mask usually for seven or eight hours a night. But despite that, I would give it all up and throw the machine out the window if I thought I could. 

What I mean is I see absolutely no benefits from the machine. Maybe they are there I just don't know them. Maybe I'd be a million times more tired without without my use of the machine. 

But the doctors told me I would feel so much better once I started using it all night every night, and that has not happened. 

Hear me roar

I wrote this last and the previous blog with a new speech recognition app. 

It is  not perfect but neither is my speech. 

It is actually designed for people with bad voices, which I have. 

My older sister send me a link to it years ago, but I never followed up. It required me to set up an account,  which is hard to do on my phone, and I never remembered to do it when I was at of my computer. Then my younger sister mentioned it and sweetly, sweetly suggested it might be the answer for me if I wanted to blog. So I figured I better try it. 

As I said it doesn't always understand me, but it is  better than either siri or the voice recognition computer program I used 15 years ago. Much has changed in 15 years, so I imagine it is better but I know my voice is a lot worse. I  figure it's a wash. 

It is not something you by outright instead it is an annual subscription. And a pricey one at that. But it seems to be worth it.

Riding the rails

One night last week when my restless legs were quite restless, I got completely in the lift and got myself onto the floor in front of my bed. There I watched TV. It divd not help, though. 

My legs were still jumping, well one was anyway. 

I raised the lift to see if that would help. It didn't. 

What it did do was caused some discomfort because ever since I came home from the hospital this summer I have stoped wearing boxers to bed. It helps get things where they need to go. It hasn't eliminated the need to call my sister for help at night but it has limited it somewhat. 

Anyway, I needed to lower the lift back to the floor quickly, but the problem was it was a little over the footboard so it didn't want to go down. 

It finally did, but then the problem was it would not go back up, at least not more than a foot. 

I refused to call my sister so I was resigned to finding a solution myself or sleeping on the floor. After 15 minutes it it did go up and I figured I better go back to bed. 

Even if my foot was  still jumping.

Worst?

 My symptoms were engaged in a perverse battle royal last week to see what was the crappiest  crap I have to deal with. And the battle continues to  rage.

It started with depression over my hearing and how I can’t really take part in dinners with more than one person unless someone talks specifically to me, which defeats the purpose of big dinners.

This was followed by continence issues and problems pooping (or lack thereof).

All of this was made worse by a newish symptom. My hands and feet have, for years, had no temperature regulation, getting cold when it’s 70 out. About mid-summer, the rest to my body thought, “That looks fun, but let’s mix it up.” Now part of me gets hope — I swear I am sweating — but other parts are cold. It makes bedtime fun — I have to cover one part but uncover another. 

Finally, speaking of bed, my restless legs have been bad and keeping me awake hours longer than normal.

So what’s worst? How about Friedreich's ataxia?

A writer?

 My oldest sister, when I related earlier how much difficulty I was having writing blogs — not for lack of ideas or because I didn’t know how to say something but because the physical act of typing overwhelmed me —  wrote that I’d figure it  out because I was a writer. 

I am not sure I will figure it out, and if doing so is required as a writer, I probably am no writer.

I find it taking longer and longer to write. Even then I still have  errors.

It takes me so long. I write what  I want to say  in advance in my head. Then when typing it out, I leave out things I thought to say but will take too long.

I had a riff on dictation software not being for me because 80% of the time Siri responds to my request to call not by  saying, “To who?” We’ll ignore her bad grammar. Instead she says, “Really? I always wanted to be cool?” But the riff was too long.

Friedreich's ataxia robs one of so so much. 

Nothing is good

 I just finished my second week of the new Friedreich's ataxia drug. The cost issue changed pretty drastically, from $6,000 a month to $80 to zero. I have no idea why.

I still can’t walk—that would have been cool but the medicine’s not supposed to do that.

But honestly I notice no change—good or bad.

The bad was what I was most worried about. I had read some horror stories in a Friedreich's ataxia group I’m in. 

My neurologist must have heard them, too, and seemed a little frustrated when I e-mailed to tell him I was having second thoughts. His reply was interspersed with all caps.

I started it soon after.

Finally, but ...

 For the first time since June 3, I am stent- and kidney stone-free and I have no more appointments related to stones.

Three weeks ago, I had surgery to break up my stones and replace the stent they put in the first day in the hospital. Two weeks ago, I had quick in-office visit to remove the replacement stent. Last week, I met with a doctor to discuss minimizing future occurrences.

It is truly a relief to put this behind me. But my Friedreich's ataxia is hitting hard and leaving me so tired and overwhelmed.

My stomach hasn’t really got back to normal yet, so I am backed up frequently. His actually is probably the result of the stones, so maybe I am not really over it.

My body temperature has become a hassle.  My feet go from cold to hot and back again when I am in bed. Or one body part will be hot, another cold, a third lukewarm—all at the same time. I have enough problems sleeping. I don’t need that.

I do seem to be using the sleep machine nightly, but it remains a challenge to put on. I don’t see much benefit either.

My legs have been really restless, too.

It’s hard and unlikely to improve.

I can be stupid

 Another problem with using the streets or sidewalks to walk ones dog is poop.

Not  that the roads are running with refuse. At least not in my city. It’s just that there often isn’t a good spot for the dog to poop and there is almost never a trashcan to dispose of said poop. This isn’t bad if you can tie up the poop in a bag. If you are using a pooper scooper, it is a  bit more problematic.

But it was a cool, really sunny day, so my preferred trail was out. I took to the streets.

Fame pooped, and I picked it up. I was heading down a quiet road whiten I saw a park with a trashcan.  Score!

But then I noticed it was off a gravel path and the gravel was about an inch below the road. I hemmed and hawed but finally decided not to risk it. My sister and husband were en route to Vermont to take my nephew to college. Better not to chance it.

But …. As I turned away from the park, one of my black wheels slipped off the road into the gravel. It’s fate, I decided, so stupidly I barreled down to the trashcan.

It was bumpy, but I got down there easy enough. 

Notice I keep using “down.”  

Returning to the street meant going up. I didn’t make it.
 I started to back up and try again. Then I got stuck going back.

A this point I texted a friend for help. Then I looked around and realized this would need the fire department not a friend or two.

So I texted my friend back and said never mind, then texted Mom and asked her to call the fire department. The problem was the park is right in the middle of my city and another one, so it took a while to figure out jurisdiction.

While they figured, Mom came.

My friend awesomely decided to come out anyway, too. She got me into the grass, but I still had too get to the street.
That’s when the firefighters showed. It was quite fast really. 

I drove; they pushed — easy-peasy.

What a day. Oh poop.

Taking it to the streets

After using sidewalks a fair bit last week, I have reached a conclusion: Unless you want to hum so every bump causes an  odd sound, sidewalks aren’t for wheelchairs. 

Even new sidewalks are bumpy. 

Old ones like most of the ones near me are narrow, bumpy, cracked, have utility poles in the of them and 60-degree curb cuts,   and God forbid you inch off one of those narrow sidewalks. The ground next to it is inches above or below.

The street’s safer.

Yay nurses

 One morning in the ICU, I woke up early and glanced at my chest. It was covered in blood.

I was so confused.

I wasn’t in any pain, but blood was everywhere.

I hit the call button and when a nurse I didn’t know looked in, I said, “I don’t know what happened.”

Her response was: “Let’s get you cleaned up,” and while she got some help, I found the problem.

I had ripped out an unused  IV thing in my right wrist. It was probably the best one to rip out. One was in use. One was in my neck and was Inserted via ultrasound. Another also went in with ultrasound and was pretty painful going in, so I’m sure would have hurt being ripped out.

My nurse  came in, and I showed him the problem. “Happens all the time,” he said, and he and the other nurse cleaned me up.

I have lots of people who help me, doing all sorts of stuff, but we’re related. Nurses — yes, they get paid — it still boggles m mind.


Cheating death

 In retrospect, I am glad the blood pressure monitor didn’t work.

Allow me to set the scene: early afternoon Saturday June 3. I had spent the night in the ER, mostly just waiting. Luckily, my sister was with me. I had a persistent but not too bad pain in my lower abdomen. 

After doing a scan, the ER folks said I had a kidney stone that was about to move into the bladder and I’d be fine. Then They discharged me.

Leaving aside the fact that I’d still have to pass a stone, which is really painful, this diagnosis had several flaws. Which brings us back to Saturday.

When I got up, I was really tired, my limbs weren’t working,  and chewing and swallowing were a struggle.

After my blood pressure monitor didn’t work, we decided to return to the ER. Well, my sister and Mm did. I probably would have just gone back  to bed, which would have been bad, potentially deadly, because at the hospital they took my vitals. My blood pressure was about half what it normally  is without my heart drug — 60/40.

I thought that is why they hurried me back at the ER. That or they realized they messed up the night before. I learned last week that they actually did a quick blood test that showed I had sepsis.

They must have taken another gander at the scan from the night before and realized that a) the stone was not moving and had caused dirty urine to back up into my left kidney and infect my body and b)  the stone was actually multiple stones.

They did a quick procedure to drain my kidney going in through my back and they put a tube and bag in. But they didn’t remove the stone because I was so sick.

Then it  was off to the ICU to get healthy. They gave me lots of medicine to boost my blood pressure and fight the infection.

I failed a swallow test, which I didn’t know was a swallow test, so they wouldn’t let me eat or drink or take my night pills. And they put in several lines to give me meds. They used an ultrasound to guide them. And they took care of me. One  even picked my nose, not the first time someone else has done that.

On Monday, they found out what the infection was, e coli. I didn’t find this out till I left the hospital. They also  transferred me to a regular room, which was fairly boring except…

I had another procedure, again through my back, this one to put in a stent to bypass the blockage, and I was given a suppository. The nurse who gave it to me fistbumped me when he saw it worked, and  the hospitalist congratulated me.

On  Wednesday, they put in a line so we could do the infusion of antibiotics at home and I was released, but …

The antibiotics wrecked my stomach, which I was warned about, and gave me a rash, which was a surprise. I tolerated it, but the medical consensus waist it got worse fo to the ER. 

It got worse. I went back to the ER.

When the ER doctor  said  they’d keep me until the antibiotics were done, that was my low point. It turned out not to be the case. I came home the next day, with new antibiotics, and have been home since.

I began full days at work on July 10. I have surgery next month to remove the stones.

I  could not have survived without my sister and Mom.

Only now am I coming to realize how sick I was. It scares me.

The latest on the Friedreich's ataxia drug

The drugmaker has a special program, they say, to ensure everyone who needs the drug can get and afford it.

I worked with them and my local doctor to get it prescribed, and a few days later, I got a call. (Actually, Mom did, because I can’t hear on the phone.) 

Good news, your insurer approved the purchase of the drug, they said. Oh, and your co-pay will be $6,000 a month.

But don’t worry. We have a co-pay card, which will help. We’ll send you info.

On reading about the card, I saw it had an annual maximum meaning it will help for 2 and a 1/2 months before running out.

Back to the affordability program: Is this for real? we essentially asked.

Yes, they said. What you need to do is use the drug for two months  with the co-pay card, then call our financial aid department, which is different from us. They’ll see what we can do.

This situation raises two thoughts in my head, neither of which endear drugmakers to me:

1. They want to hook you on the drug. I don’t mean addicted. I mean that after two months you can’t bear to think of life without the drug, so you’ll pay anything.
2. They are totally setting the monthly price by what you earn.

A friend of mine works to get drugs approved and into people’s bodies. She is kind, smart, and passionate about helping people. I am trying to make her who I think of when I think of the pharmaceutical industry.

Dora’s got nothing on me

 Unlike, say, SpongeBob SquarePants, I can’t say I am a fan of Dora the Explorer, which is probably OK with the creators. They weren’t trying to attract adult males, I expect. I would, however, watch a Boots the monkey show.

My niece used to watch it, though, so I’m familiar with it.

At some point years ago,  when her kids were little, my sister would sing Dora’s “We did it” when helping me. 

Lately, I find myself singing it to Fame after I do anything. Granted, any time I do do something, or  even without requiring a trip to the ER, it’s worth singing about.

Writing while standing

This is going to be short because I am writing while standing.

I think I’ll figure put how to type OK in time, but for now it’s slow-going.

I'm not a good typist anyway, and this is more awkward.

I am using my new electric desk riser, which works well, and I am standing!

Sleep therapy stinks

If I were to choose a week to represent my first quarter efforts at sleep therapy, it would be last week.

Last week, I wore the mask four hours or more for five days. This is moderately better than the past 90 days when the average was about 62%.  February was bad, which brought down my totals.

Similarly, my five hour a night average for all nights in Q1 was weakened by February. This week’s 5.5 hours is probably a better gauge. It is still lower than the 6.5 hours my doctor wants.

Only one night was a good fit. This means the mask did not leak badly, usually when I move while asleep. I got a grade of 79% this one night, a grade that would horrify me if I got it in school. Not much I can do about it, though, because I am asleep.

Restless legs remain the worst issue, and they were why I didn’t sleep much Sunday or Monday (with or without the mask).

On Tuesday, I fell asleep nearly two hours earlier than normal, with the mask. I also woke sup nearly 1.5 hours early with violent restless legs. I eventually used the lift to get on the floor for 30 minutes and pet Fame.

I hate sleep therapy.

  

Sleepy

 When I was in college, my roommate went out early one weekend day. It was early (college student early, anyway) when he returned, and I wasn’t awake. 

He realized he forgot his key card to get in our building but wasn’t worried, thinking: Matt’s window is right by the door on the first floor. His window is open. Surely, he’ll wake up when I call him.

Nope.

I didn’t wake up when he pried the screen off either.

Or when he opened the window.

Or when he climbed through.

Or when he replaced the screen.

I did wake up when he was closing my window. Go back to sleep, he said.

I can now top that.

On weekdays, my alarm goes off at 6:30. I give Fame a pill, pull on my shorts, and wait for my sister to get me fully dressed. On Thursday, I fell back asleep and didn’t wake up when she came in.

Or when she put on my leggings.

Or my socks.

Or shoes.

Or when she fed Fame.

Not until she started tapping me.

I was tired.

Mooning my niece

 I was trying not to use my right arm Thursday to rest my forearm. This meant holding on to a grab bar with my left hand while on the toilet. It did not work well, and I fell off on to the floor, banging my head.

Fame was right there, ready to help, so I told to bark. Actually, I told her to drop her toy (she thinks when she barks, people come in to see her). Then I had her bark.

I was about to  phone my sister, who I had just seen outside, when my niece,  who is home from college, came in.

Her first  glimpse must have been my bare butt because my head was under the sink. After assuring her I was OK,  she seemed to hold a little debate with herself about whether to get her mom. But then she just sort of shrugged her shoulders and asked if I was getting in my chair or on the toilet.

Then she saw my head. “Is your head all right?”  she asked. I asked her if it was bleeding. Just scraped, she said.

She got me sitting against the door jamb,  lowered the lift, and got me in it — all, she told her mom later, “with minimal laughter.”

She may be more mature, but she’s still awesome.

Have a drink

 Some people remember what they were wearing on some past day. I remember just about every instance of alcohol passing my lips aside for a few sips of wine or champagne here and there.

Liquor

At my first party in my second year at college, the host learned I didn’t like beer. He whipped out his blender and made me a vanilla daiquiri. I didn’t  like that either, but it was a nice thing to do.

My drink of choice when I  had to choose was a whiskey sour. I done remember why. I must have had a sip somewhere that convinced me I could tolerate it. I suspect a brother-in-law was involved.

My first was bought for me the summer I turned 21 by my boss at the Justice Department. I walked back to the office a bit dizzy.

My second and last whiskey sour came courtesy of one of my oldest sister’s friends. She wanted to see It Could Happen to You. I’m a fan of Bridget Fonda and Nick Cage, so off we went. We got there a bit early, and she suggested we get a drink at a nearby bar. I ordered a Coke. She responded, no way you’re making me drink  alone. I reordered a whiskey sour.

Beer

I remember having a  sip of Dad’s beer while he used the riding mower to cut Gram’s grass.

At the aforementioned first party, I got beer from the keg and had two drinks. I then went outside for two reasons: I thought I might throw up and I wanted to pour out my beer. 

Later that year, I became assistant managing editor of the student newspaper. After the first week, the outgoing staff took the new staff out for a drink. There was a pitcher at the table, and I was just nursing a cup with a sip here and there. At the end of the night, I was elected to finish the pitcher, which had about half a glass-worth, what was missing from my cup.

I recently had a sip of Guinness on a St. Patrick’s Day.

Which brings me to my oldest niece’s wedding last weekend.

They had a regular bar and a candy bar, or buffet. I was sitting next to my oldest nephew when he returned from the candy one with a nice little bag of treats.

At the end of dinner he asked if anyone needed anything from the bar. I was sure he meant the candy buffet, so I said, sure, I’ll have a nice assortment. He may have raised his eyebrows but off he went.

He returned with his sister, who put two little glasses of beer in front of me. Then he put two more and said something about getting a nice assortment. 

I then realized the problem. Whoops.

I also knew that there was no way I could tell him because I’d start laughing too hard, and only my sister can understand me through my tears.

I started sampling them, but he noticed I kept smiling. He asked me why. Fortunately my sister came up then, but even she couldn’t  understand until my third recitation.

And for the record, I wore shorts.

It took me a while to write this as I am having arm problems, but it OK today.

A treatment

 February 28 is Rare Disease Day, and the Friedreich’s ataxia community celebrated the FDA’s approval of the first treatment for FA. I wish I was excited. 

First, the improvement is quite modest. My neurologist said the drug takes you back about two years. I don’t remember 2021 being awesome FA-wise.  I know that anything is good, but combined with No. 2, this drug gives me pause.

Second, I  suspect it will be expensive. The drug maker said it will be covered by insurance, not that that’s a guarantee, and they set up a program to make sure people can afford it. That seems a guarantee, though. You don’t help people pay if it’s going to be affordable.  

We shall see.

Hannibal Lecter slept here

I do NOT look like this.

I woke up at 6:30 with my alarm Thursday morning and gave Fame her pre-breakfast pill. Then, because I was sure it was Saturday, I went back to sleep. This led to my sister having to wake me up (“Hannibal Lecter” as she described me to Mom because of my sleep mask). 

I heard my alarm Friday, and, determined to avoid a repeat of the day before, removed my mask and was about to begin preparing for the day. “Why am I so tired?” I wondered as my eyes strayed to my clock. Probably because it was 2:18 a.m., and the alarm must have  been a dream alert. I went back to sleep, without the mask.

I then woke up to my alarm again and got Fame’s pill out. She didn't come eagerly over to my bed to get it as she does on hearing the alarm. Probably because it was another dream alert.

On Saturday, it was all I could do not to get ready for the day ahead, sure it was a weekday.

Best game ever

 

My little family, as Mom calls my sister’s family, is big into hockey.

I wish I liked it more, but my eyes don’t work well enough to follow the puck.

I like going to my nephew’s and niece’s games because I like supporting them. There is little I wouldn’t do for them, even get blurry-eyed in a cold rink.

At my nephew’s game yesterday, I figured the best part would be Fame doing an up to watch the warmups. She was quite interested.

Shortly after the game started, though, the puck bounced into the corner right in front of where we were standing behind the glass. One of my nephew’s opponents skated in to retrieve it and was almost immediately smushed into the glass by someone on my nephew’s team. As the battled for the puck and the opponent took a few more checks, I realized the checkee was my sweet little nephew, who’s not so little.

It was great and hilarious. He scored in each of his other  weekend games, but this was better. I can’t follow goals, but I followed this scrum.

Oh, and I really was standing at the boards for the entire game.

Back in my good graces

She must  have known I blogged about how bad she was by eating tissues because on Thursday Fame shown.

I threw of my bed covers that morning. Well, as much as I can throw anything. 

Until it hit the floor, I didn’t know my remote was on it. I didn’t ask Fame to get it because I am sure it was under my chair or bed. I was going to ask my sister to get it when she helped me up.

Until somebody started poking their snout on the bed. With the remote. What a dog. 

Bad dog

 Surprisingly enough, I found a benefit to not being able to speak clearly.

Normally, it’s bad, like when I had too find my brother-in-law to explain to 911 that my call was an error. I tried telling them, but he operator could not understand me.

But during my cold, I found one.

Mom had to call the vet to ask if Fame, my highly trained service dog, would be all right after eating my day’s worth of dirty tissues.

She has eaten tissues in the past but just one or two when she has been alone. Not 10-20 when I am washing my hands.

She was fine, just a bad dog.

Stupid cold almost kills me

I wore socks to bed last Saturday night.

I was trying to think ahead because I had, and still.  Have, a cold.

On the one hand, tests suggest it is just a cold. On the negative side, as my first cold in years, I pretty sure it will kill me.

The socks were because I was coughing, which causes my knees to jump toward my chest, which causes my blanket to fly off my feet.

But my feet got hot.

I  was using the lift to sit up and take the socks off, and it nearly worked, but I hit the down but on the lift accidentally, which caused the supports that hold the body to loosen and my right side to fall out of the lift. Fortunately, my back hit my chair so I stayed on the bed.

No problem, I thought, my watch is in easy reach. I’ll just call my sister.  But my watch was acting up.

Somehow, it called Mom, which took me a while to figure out. Then I had her call my sister who rescued me and took my socks off.