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?