Degressing

I love my family to pieces, but I have not been a fan  of big family gatherings for years.

It's hard to maneuver when I am in a crowd.

It is also hard to hear unless someone is talking straight to me. Even if someone is talking to me, background noise makes it so hard. I have to strain so hard to pick up even scraps.

Tonight as I sat quietly through dinner unable to join in the boisterous conversation, I realized another issue: I can see the progress of my disease all too clearly.

I used to be able to take part in our dinner-table talk or group games.

Like so much in my life, "used to" is the key phrase.

She's Egg-cellent

If you were to ask my sister, I am fairly certain she would say she's my arch-nemesis in this blog and one stories I tell my friends, the Kingpin to my Daredevil.

Nothing, of course, could be further from the truth. Friedreich's ataxia is my nemesis. She is a comic-relief villain like Egghead.

no, no, I kid.

She, my brother-in-law, my niece and my nephew willingly share a house with an occasionally grumpy, always bitter (but freakin' awesome) person (me). What's more, they help, all of them.

My sister doesn't even bother saying help when I call her at all hours of the night. She just answers, "I'll be right there." And she is.

She complains about me sometimes, but she's kidding (I hope).

Nemeses aren't the joking type.

Short takes from Operation Ablation

• I wasted not to cough till I healed. I didn't even bother pointing out that this is as silly as telling  me not to fall because I am on blood thinners. I have been OK mostly, but today I doubled over when coughing. That hurt.
• Until last night, I had despaired of ever getting all the adhesive off my body. Fame, really my sister, solved it. Fame stepped in gum on our walk over the weekend. My sister got it off with canola oil. It worked on the adhesive, too. YAY!
• Long-term teleworking -- until I am off the blog thinner --- is boring.
• My nephew and niece both offered to stay home from school to minister to their ailing uncle.

So far so good

About 72 hours ago, four or five people were shaving my chest and "nether regions," as Mom called it, putting really cold patches all over my body and putting a mask over my mouth and nose.

At first, it was just oxygen. Then the anesthesiologist came in and pumped something into my IV, and the oxygen changed and tasted bad. I coughed twice and then I was out.

While I was under, they snaked two catheters up veins on both sides of the groin. From there , they journeyed up to my heart and did something (I am still not sure what. It involved creating scar tissue to block misfires, I think.).

Then I spent the night in the hospital, where my low blood pressure was extra low, bedeviling the night nurse. But then the doctor came to se me. He was pleased. He halved the dose of the bad heart medicine, put me on a blood thinner and something for my esophagus because they had put a pipe down my throat.

He told me I might have  Afib for a few months but not worry. So I guess all I have to worry about is the blood thinner causing this:



Not really; the pharmacist said the medicine I am on does not usually cause uncontrolled bleeding.

Bad omen

One of my nieces graduated from law school Saturday. On that day six years ago, she was my personal assistant at a conference and she took a photo of me and Claren gazing at a stuffed polar bear. That was, I thought, a good sign.

Less good was today's second call with the hospital ahead of Wednesday's "procedure." (A friend at work calls it "surgery," which makes me like her all the more.)

I have to pay them in advance!

What are they saying?

We need your money upfront because you might not survive?

The boy who keeps my head safe

When I went to my old office three or so years ago, a friend asked how my living situation was going. Great, I told her, I really liked having my niece and nephew around.

She asked how old they were, and hearing they were nearing teen status, said, Well, enjoy it now. The assumption was they would become jerks once they hit their teens.

I wasn't worried this would happen, of course, and it hasn't. They both remain great.

Just a few days ago, I was putting my feet on the footplate. My left shoe hooked the side of the plate and fell off.

At that point, I heard someone come in, but when I looked, I saw no one but the house dog. I asked him who had come in. Not that I expected an answer, the house dog is not too bright.

My nephew, though, must have heard and wandered over to my door to wave.

I asked him to put my shoe on. On me, although he wears the same shoe size as me.

He replied the same way he does when I ask for his help with anything, "sure." And then he put it back on me.

Around my room, I have a chair rail. It has sharp corners.

One of the first thing we did was put foam covers on all the corners.

Whenever I look at them, I think of the 6-year-old boy who helped his mom put them on. He tested them by pressing his head into them.

Found out

I came in to the office today and the safety coordinator said to me, How are you? You OK?

I was sort of confused. I know the government is supposed to have lots of leakers, but why would my bosses or friends tell him? So I just said, I'm OK.

I heard you fell Monday, he said. Dammit!

I did, in fact, fall in the bathroom Monday.

One of the lovely side effects of the heart medicine is constipation. I have it mostly taken care of with Miralax. But as anyone with any constipation knows, when your colon suggests it is ready, you don't delay.

Wanting to take the opportunity, I transferred quickly. But I struggled to pull my pants down.

Afraid the chance would fade, I gambled. And I lost.

 I saw one of my feet turning as I stood, but I didn't sit back and try again. I kept standing. And I fell.

The problem was finding someone to help. My main helpers were not there. I hadn't seen my two other helpers. I called a friend to ask her to find a guy who would help me. She wasn't there.

Then I heard, Matt, do you need help? I said yes, and he came in and helped me up.

And then he told.

Not that I really mind. I am supposed to think about anything we can do to help me with transfers. I was thinking a concierge who would assist me, but that might be too costly.

Students to PTs

The first student PT I had come help me was good but a bit of a flake. He emailed me to cancel one day, and I never heard from him again. I don't know if he died, went to jail or what.

I really liked the next one. She was good, too, but her dad had health issues and she had to stop helping me. She did make a special appearance, though, when my current PTs were both unavailable.

I have been ridiculously lucky with my current two student PTs.

We have worked together for three years -- their entire time in graduate school. Both take the time to offer explanations or theories. Plus, we don't hang out, but I think/hope that we are friends.

So I am sad that one is leaving after next week.

I know they will both be great PTs, already are.

Everything is hard

Things are getting real as I got a letter with all the stuff I need to do pre-"procedure."

It said I can resume my normal activities in a day but just not exert myself for a few days.

My older sister, who was visiting, pointed out that everything requires exertion.

I was thinking of this when I got out of breath getting off the toilet today, unfortunately, a fairly regular occurrence. Ugg.

But in good news, my will is signed, so I can kick it.