Monthly Archives: September 2018

Inability To Write

Trigger Warning: Graphic and Bloody Content Related to Medical Treatment

Also, there is a link to my podcast, equally scary.

I call the following picture “Why I Can’t Have Nice Things…” Continue reading Inability To Write

Itching, Itching, Scratching…

By chance, cleaning through my unread emails, I stumbled across notes and pictures for a post I had planned for nearly a year ago and for some reason never published. It struck me that it could very nearly have been something I wrote just this week. There wasn’t much written, just two rough paragraphs, but it did come with a nice collection of pictures. Here is what would have been, from November 4th, 2017:

Side Effects Have Me Scratching My Head

There’s no doubt that dealing with the side effects of cancer treatment can be perplexing. Patients deal with everything from digestive issues to pain to total hair loss to fatigue to stiff joints.

Over the last 3 years, I’ve had my share of issues and adaptations. Sometimes, alleviating a side effect proves relatively simple: take a pill, stop taking a pill, wear compression socks, change diet, wear a hat, take another pill, just accept it as a new part of life… But my current side effect of note has me scratching my head. It Itches. Oh, it itches. And nothing seems to be able to make it stop.

Continue reading Itching, Itching, Scratching…

Self-Care Challenge: Just Ask

One of the hardest things many chronically ill patients face is that moment when they realize they must ask for help. Why is that so hard? We live in a society that values self-reliance to the point, one might argue, that it becomes dogmatic. If you require assistance, you’re a taker. Everyone should be self-sufficient — or at least privileged enough to be able to rely on assets they may or may not have truly earned. But clearly, we cannot all be that fortunate, and certainly not all of the time. Reaching out for help should not be stigmatized. And one way to normalize the process is simply by practicing.

Another Month, Another Challenge

It is time for my monthly Self- Care Challenge, as an ambassador for the Health Storylines self-care program. This month, the challenge is to Just Ask. Every day, without being gratuitous, find something that you genuinely need assistance with and ask for it.  Continue reading Self-Care Challenge: Just Ask

To Clear or Not to Clear

I was told twice in one day this week that I looked “bright.” I was smiling and active, keeping myself busy and directed, and I was surrounded by people who I had not seen in several months (along with a few I had never seen at all). It was the good nature of reconnecting in a friendly crowd without the threat of being lost in it, I imagine, that sparked my particularly good mood on that occasion. The description was used again on subsequent days by unrelated people, causing me to take note that, perhaps, the whites of my eyes have simply become whiter. (Insert your own Revolutionary War joke here.) Continue reading To Clear or Not to Clear

Dying, Redux

I have tried to gather a few different perspectives on what it feels like to die or go through the process of dying, including my lengthy interview with Michael March just prior to his death not long after I met him online. Below, I present a different perspective entirely from Claire Wineland, a Cystic Fibrosis patient who had been advocating about her disease for quite some time. It is a video I found on YouTube that she uploaded a while back, explaining her own experience with technically dying on a number of occasions from complication arising from her disease. Continue reading Dying, Redux