Website Changes

Yes, things look different here. Google told me that my website is not accessible to people with various disabilities. They also gave me a few suggestions on how to improve this situation.

While I was surprised, I was also grateful for the information. I don’t want to lock anyone out of my website. So… I am beginning to make the necessary changes.

Evrysdi and Me so Far

Graphic showing what Evrysdi does

I have been taking Evrysdi since Friday. So far, the only thing I need to be cautious about is washing it down with enough liquid. It doesn’t taste bad, vaguely berry-ish. It does, however, leave an odd sensation on the tongue. Since the instructions are careful to tell us to wash our skin carefully with soap and water and to AVOID getting it in our eyes at all cost, I’m guessing it may be somewhat caustic. Acidic? Basic? I don’t know, but I drink until the sensation is of my tongue.

I haven’t jogged around the room, in case you were wondering.

When/If I notice something that cannot be labeled as “placebo effect,” I will be sure and post it here.

 

Yes, I Have Been Gone a Month.

Sometimes life just crashes in on you, doesn’t it?

I have been trying to take care of my pressure sore. (It is healing well, thanks for wondering. Maybe 2 more weeks?) Since it is the first one I ever had, I and my family and caregivers were feeling foolish for letting it happen in the first place. I suppose guilt is in there, too. It often rears its head, especially when it is truly irrelevant.

I think that the worst part is that it stole computer time from me! That has been filled by Amazon Prime Movies. While I have seen some truly unexpected gems, some were NOT. 😉

I also started something new. Here are some quotes from my private diary.

I cannot tell you how quickly things moved to get things started with Evrysdi. It was nothing like my experience with that other medicine. This time, the doctor prescribed it. It got forwarded to Medicaid/Medicare. They approved it. I got a call from the pharmacy that works with this medicine. I have been trained in how to take it. They plopped it in the mail. It arrived, and I took it.

I will have to drink more water afterwords and maybe eat something soothing. It feels/tastes uncomfortable on my tongue. That is something of a caustic medicine, I guess. The instructions say not to get any of it on your skin. It helps distribute SMN the body, slowing the deterioration due to SMA. People getting it early enough seemed to have really good results. This webpage shows what Evrysdi can do – and has done in testing with real human beings.

Day 4: Who Knew That 15 Minutes a Day Could Be so Much Fun?

Old-Fashioned Typewriter, Purely Decorative
It Doesn’t Quite Work This Way for Me, At Least Not yet. I Can Keep Hope Think, Can’t I?

After doing some running around and accomplishing very little, I got to work here. Started to “get to know my protagonist” as more than a cardboard cutout. 15 minutes ended very quickly, but I had another pile to tackle.

I certainly sound different than I did yesterday.

Day 2: I Am Almost Overwhelmed with What I Need to Do estimate

I didn’t post anything here yesterday. I hate to in it, but I dropped the ball. It was day one (again) of the “30 Day, 15 Minutes a Day” writing challenge.

My only justification is that I could tell that it wasn’t working, but it took me a while to figure out WHY. It simply wasn’t a story. It was a series of loosely-connected events without a focus.

Things that seemed to help me figure what needed to happen included:

  • Moving from Microsoft Word to plain text, and finally moving each individual paragraph into Scrivener so I could move things around more easily. (I think this forced me to rethink the function of each paragraph…)
  • Yesterday I did more detailed character work. (When I reread it today, I realized that neither my protagonist nor my antagonist had any goals. Today, I am so overwhelmed. I really need to go back to the beginning.)
  • I need to add in sensory details.
  • And… I know this is sort of backward, rethink the outline.

These are not exactly steps. I tend to do all of these at the same time, thoroughly confusing myself in the meantime.

On the other hand, I did turn in the book review for my church’s newsletter.