Category Archives: Drugs

Good Things

I take lots of notes on my phone to remind me of the things that I’m planning to write about. But sometimes I think I overestimate my ability to understand my own shorthand. For example, I have a note for today that just says Relativity. That’s what the blog is supposed to be about, but I have no idea what it means or even if it’s actually the word that I wrote and not just some autocorrection.

Relativity.

Yep, just checking. I have nothing to say on that topic.

Some good things have happened lately, so maybe I should write about those things. I finished a New York Times Sunday crossword puzzle without cheating. I made it through the entire morning of no school without yelling at Scarlett or Otto. Wait, nope. I did yell at Otto, because he was eating all the plants in the backyard. He deserved it, so that doesn’t count.

And I won an award, which happened a little while ago, but I realize I haven’t really acknowledged it yet. It’s a leadership award from ALS TDI, the main organization that my family and I support since we feel that they share our sense of urgency around developing treatments and a cure for ALS. Read More>

|Categories: Cure, Drugs, Faces, Relationships, Research | Tags: , , , , , , , , | Permalink

My Body, Myself

After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.

So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.

One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult. Read More>

|Categories: Diagnosis, Drugs, Life, Vanity, Venting | Tags: , , | Permalink

The Nurse Visits (or) Sarah Goes Off on Several Tangents

I’m drinking tea and waiting for the visiting nurse to come. She checks my blood pressure, listens to my lungs, examines my stick skinny legs that lead to feet so swollen it looks like I could use them to paddle a rowboat. I like the nurse because every week for a month she’s told me she detects no change in my progression. Her focus is mainly on my breathing, so it’s always a relief to hear that my chest is clear and my oxygen levels high. She calls me “love.”

ALS is a tricky disease. When a muscle starts to go downhill, you can’t help obsessing over it, and obsessing over your breathing turns out to be a great way to feel like you maybe can’t breathe. Anyone who has ever had a panic attack probably knows what I’m talking about. It can be hard to decipher the real dangers from those that are merely in your head. Harder, still, when you truly can’t trust your body to function properly.

For now, the nurse tells me, my symptoms can be managed with anti-anxiety medication and Aleve. I take a few pills a day, when my chest feels tight, when my ankles feel like ticking time bombs. It works, so that even though my breathing remains shallow, I can always manage to stay calm—and conscious.

An aside: Why are shallow people called airheads? Read More>

|Categories: Drugs, Life, Progression, Relationships, Therapy | Tags: , | Permalink