ALS and Pneumonia Conspiring to Make Things Tougher
by Cathy Speck
Hi ho hi ho, it’s back to bed I go.
My pneumonia has gotten worse, and my voice is fading. I do, however, have hopes that my voice will improve a bit. The pneumonia is more complicated and worrisome.
I was quite excited about going to the Davis Independent Film Festival last weekend to watch the “Speckumentary,” on the big screen. But the Friday before the film fest, I had a doctor’s appointment and more x-rays, and I was kindly but firmly advised not to mingle in public. Hmmm there’s gotta be a joke there.
So, I stayed home all weekend. I didn’t mope around, ’cause that would make everyone miserable. Instead I just looked in the mirror, made faces and cracked myself up. That was all the energy I had. But we did have nice visits from sister Peggy on Sunday, and “A Happy Squirrel fading Day” on Wednesday with sister Mary Pat. Keep those visits comin’. My pneumonia/fading voice/ALS are not contagious.
Today we went back to the doctor to discuss the lab and x-ray results. The pneumonia is getting worse, not better. I was not surprised by this news.
I know how this story goes, but it doesn’t mean I’m going to “color inside the lines.” My health has taken a bad turn. I have “progressive” pneumonia to keep the progressive ALS company consistently. This way, they don’t even have to text each other to make play-dates.
We still don’t know if it’s bacterial or viral. I had been on two powerful antibiotics. Today I was given a 10-day supply of Doxycycline Hyclate, which is the third antibiotic they’ve tried.
If this still doesn’t kick the “L” out of pneumonia (10 years ago, there was an “L” in pneumonia, and now it’s making a comeback), then it must be viral. Either way, the knife in this road is increasing the speed of the ALS progression. I hope to hit some speed bumps to slow it down PDQ.
For those of you who find my “diversional humor” difficult to decipher, the pneumonia is typical for “later stages of ALS,” and it sometimes is indicative of… well? Hmmmm… We shall see what we shall see. More plainly: Having pneumonia and ALS is bad. Having ALS and pneumonia that’s getting worse, rather than better is very bad.
I feel much worse than I look, Sometimes I think people expect to see me bedridden, with a thermometer in my mouth. But other than my hair being un-coiffed, the occasional oxygen mask, and my muscles’ photo on the back of milk cartons (Have you seen me?) I still turn a few heads.
I’m thinkin’ this is a good thing. I know/understand that, in general, people are uncomfortable when they see others suffering. As everyone knows, I’m a social butterfly, not an isolated moth. So, I’ll keep my smiley face power “on” and keep my water glass half-full.
In the meantime, I trust that you all will keep on smiling, laughing, staying safe and surround yourselves with a healthy glow….
Cheers & Chipmunks…
PS: I do like visitors, and more than one at a time is good, that way I don’t have to tell “my story” over and over again. My doctor says to limit it to half hour visits a couple times a day. But I think we can lengthen those if I talk less and we take little breaks, etc, blah blah, or you can come over and read to me. Or we can just sit and read to ourselves, or watch funny movie.
Also, if anyone wants to Skype, we can do that. My laptop has a camera, and I also have a camera to put on your PC, which I’m happy to lend to whomever wants to visit me face to face without being “in person.” And April Kamen can keep making those super fun films that we put on YouTube, or FB, or my “blong,” www.cathydyingasliving.com
You can check out some of the mini -films on YouTube, just type “Cathy Speck” in the search line.