Monthly Archives: June 2014

Anxiety, with Seagulls

Sometimes I can’t believe that I ever worried about ANYTHING before ALS. I feel like if I could have my health and my life back the way it used to be, I would just walk around in a state of blissful gratitude all the time, totally irritating the hell out of other people.

But if it sounds like I’m suggesting that everyone who has it better than me should be happy and appreciative all the time, I’m not. That’s obviously nonsense. After all, by that logic, I should also be happy all the time, because the world contains many people whose lives are harder than mine.

These are the things I think about as I struggle to make sense of my disease and what it’s done to my life and the lives of those closest to me. I used to be ABLE. I took care of myself and my family, I cooked, ran, drove, stood on my head in yoga class (sort of. Whatever. That part is not important.) Now I need help to make a simple meal, and getting in and out of bed is a serious physical challenge. When my husband travels for work, I am overwhelmed by logistics. Who, when, what if? Read More>

| Categories: Life | Permalink

On Doctors

I recently went to two starkly different doctors offices. The first was my regular ALS clinic here in San Francisco, where I saw myriad specialists, who poked at me and tested things like my breathing and my patience. I got a mostly good report, along with prescriptions for a new wheelchair and braces to wear during the day that will keep my ankles from turning in and looking like they’re broken, which is sort of a horrifying way for them to look. They don’t hurt. Rob was told that he has to massage my feet twice a day, and I have no idea how we’re going to fit that into our busy morning of trying to encourage Scarlett to put clothes on her body and maybe even eat food before she goes off to summer camp. In fact, I’m 100% sure there will be no morning foot massages. So maybe we’ll just aim for once a day. Read More>

|Categories: Doctors, Drugs, Life, Progression, Venting | Tags: , , , , | Permalink

My ALS Story

I remember so clearly the day I saw the neurologist for the first time. He was young, a second year resident, and he seemed almost giddy as he described my symptoms to the attending doctor. I, having no idea what any of it meant, was also a little giddy, because someone was taking my situation seriously for what felt like the first time. That was January 9, 2012.

When I had seen the nurse practitioners the year before at UCSF, they were dubious about my claims that something was wrong with my feet. One ordered blood work and told me that I was fine. The other reluctantly agreed that I should see a podiatrist. I thought I had a pinched nerve. The NPs seemed to think I was a bit of a hypochondriac.

But I had been falling. Read More>

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