Category Archives: Doctors

Weekend of Awesome

Fall is a crazy time. Maybe that’s true for everyone, but for some reason this fall seems more chaotic than usual in our house. Or, if not exactly chaotic, then just busy. This past weekend started with the Friday publication of an essay I wrote for CNN. I was so excited, and spent the morning toggling back and forth between different sites, trying to determine if anyone was reading it. They were! At which point I had to question my decision to send CNN that one picture of myself in the ICU with very, very dirty hair.

I then spent the afternoon at a trampoline park with Scarlett and one of her friends. When they got bored of bouncing, they went outside into a grassy field, dumped dirt on each other, and then found some puddles to splash around in. I put my mud monster into the car about an hour later, and the evening was spent trying to find a child beneath the dank exterior of what looked more like one of those dogs with dreadlocks.

So when I say we’re “busy”, I don’t always mean busy in a cool way. Read More>

|Categories: Cure, Doctors, Drugs, Life, Parenting | Tags: , , , | Permalink

Just Breathe

I went to my ALS clinic on May 11. My breathing numbers are getting low, but my doctor told me to ignore them. “They don’t mean as much as you think they do,” he said.

“Then why do you tell me what they are?” I asked.

That day, we ordered a cough assist (because coughing and blowing my nose are hard for me), and a Bipap machine—the Trilogy 100—because I didn’t want to find myself in a position where breathing was difficult and I wasn’t prepared.

Three days later, I was back at the clinic. I’d been reading to Scarlett that morning when I felt difficulty drawing in a full breath. I knew that I was not going to suddenly drop to the floor, unconscious, but I was uncomfortable. At the clinic, the doctor told me that what I was experiencing was 20% a breathing problem and 80% a panic problem.

“You’ve probably been thinking a lot about your numbers,” he said.

I had. When you find out that your breathing muscles are weakening, it’s really very different than dealing with weakened arm muscles. Both suck, obviously, but only one makes you feel like you’re in a dangerous situation.

“You’re not in a dangerous situation,” my doctor said, and I could tell that he was right—for the moment. I had gotten nervous, the recent clinic news a loop in my brain, a reminder that I have a disease that only gets worse. But I was safe, and my assistive breathing devices were on the way, supposedly being rushed. Read More>

|Categories: Doctors, Progression, Therapy | Tags: , , | Permalink

Three Nights

Wednesday: We went to the emergency room because every time I coughed, I ended up choking and it was freaking me out. I couldn’t seem to get the cough out, only push it back where it came from and make myself feel even worse. It was a little like early labor in childbirth; I ignored it for as long as I could until it was clearly time to seek professional help.

Rob was on a work retreat, so my sister drove me to the ER, with Scarlett in the backseat running a constant commentary, and driving me nuts. I was concentrating so hard on breathing. When we got to the hospital, I went ahead, while Liz handed Scarlett off to her Uncle Rob. The ER was half-full when I rolled in, with one person ahead of me at the window. I felt awful. I knew I had to cough, but the prospect had become terrifying, like filling my throat with glue and then trying to breathe around it.

A Dr. walked into the room. “Mrs Copeland?” he said, looking around. I caught his eye and made the universal sign for choking. “Mrs. Copeland?” he said again, this time to me. I shook my head, indicating that I was having an emergency. “Oh,” he said, and walked away. “You’re okay.”

When Liz walked in, she dealt with a ridiculous check-in process, all the while trying to contain her anger as she kept repeating my sister has ALS and she can’t breathe. Read More>

|Categories: Doctors, Drugs, Life, Meditation, Parenting, Progression, Vanity | Tags: , , , , , | Permalink