Category Archives: Doctors

Staying Aware

Today is the last day of ALS Awareness Month. That doesn’t really matter to me, although I’ve appreciated all of the posts and efforts people have made during the month of May to raise awareness and share their realities of life with ALS.

Tomorrow is June. Am I going to stop raising awareness of ALS and move on to something else? Of course not. This is my thing. After all, what if we only celebrated hotdogs on July 23, which is National Hotdog Day? Would that be fair to hotdogs? The answer is no, it would not. And since we’re asking questions, is hotdog one word? Dictation seems to think so, and I’m too lazy to argue.

May was a good month. I celebrated my seventh Mother’s Day. I survived while Rob and Scarlett went to Arizona. Some of my best friends came to spend a weekend with me. Memorial Day weekend was full of peach picking and pool parties. Otto turned one, and his personality changed not at all. Read More>

Saving Face

I’m having a hate–hate relationship with my Trilogy, which is the BiPAP machine I use to breathe at night. Except, do I actually use it to breathe at night? The fact that I’m unclear about this is the biggest part of the problem.

Back in June, I was in the ER and then the ICU for a case of pneumonia. I had already been told that my breathing levels were on the decline, and the illness didn’t help. I left the hospital with both a cough assist and the Trilogy, and I was told to use the latter every night.

Friends with ALS told me to try the nasal pillow mask, because it was the smallest and most manageable. Little plastic “pillows” fit into your nose and a single strap wraps around your head. Air blows directly into your nostrils all night. But it didn’t work for me, at least not at first, because my mouth kept popping open, shifting the air around and waking me up. So I opted for a full face mask, not unlike an imprisoned serial killer who eats his victims. That’s right, I said his. It was not a good look for me. Read More>

The Leadership Summit, eventually

This morning Scarlett and I were sitting at the dining room table where she was eating a typical breakfast of spaghetti and meatballs and I was drinking a cup of tea.

“I didn’t blog yesterday,” I told her, as if admitting something scandalous.

She seemed unperturbed, busy aiming an entire handful of grated parmesan cheese directly into her mouth.

“Please stop doing that,” I said, and then had a flashback to my own childhood and visits to see my Aunt Theresa and Uncle John. Theresa was my grandmother’s sister and everything about her and Uncle John seemed very old and very Italian. Their couch was covered in plastic. The fruit on their coffee table was wax. When we arrived in the morning, they were always eating cold spaghetti, and Uncle John would pinch our cheeks so hard they stayed pink for the remainder of the visit.

Scarlett continued eating her spaghetti, oblivious to my distraction.

“What do you think I should blog about?” I asked her.

“Well,” she said thoughtfully, “You could definitely blog about Otto throwing up and how Jack almost dropped my tooth fairy in the throw up.” Read More>