I’m on vacation the next two weeks, so to tide you over until I return on July 19, I’m sharing some links to a few of my favorite posts of 2023. They’re worth a second look (or first look if you missed them originally).
But first, a quick addendum to my recent comments on pain scales. I’ve got a new way to measure pain and disability! It’s based on how many times people stop to ask if you need help crossing the parking lot to your car fifty feet away. Does it happen A) once or twice a year, B) once or twice a month, C) every single time you do errands, or D) every two minutes in each trip?
A few days ago, I was apparently at the D level of pain/disability and lost track of how many people asked if I needed help carrying a three-pound bag of groceries to my car! (I’m fine, just don’t do well in hot weather, and it was hot and muggy, so I must have looked particularly miserable.)
Of course, that’s the exact opposite of #ListenToPatients, so I don’t really recommend it as a serious measurement. It’s the mirror image of when health care providers don’t believe us when we say we’re in pain, because we don’t look/act/sound like we’re in pain. In both cases, it’s an external judgment, and what matters is how we actually feel (and we know that better than anyone else can), not what someone else thinks we feel.
It struck me though that while external judgments are not good for getting medical care, they can be a useful reality check for when we’re in denial about how we’re feeling. If an increased number of strangers are worried about us, maybe we should stop and consider whether we might actually need, if not assistance, at least a rest in the shade. A lot of us tend to discount or pain/challenges so often that we don’t notice when we’ve gotten to the point where we do actually need some help. Maybe what we need most isn’t so much a pain scale, but a way to check up on the feelings we’re denying.
Now for the links to a few favorite recent posts to tide you over until I return:
- On gene therapy (I know I’ve said it before, but gene therapy is coming at a rapid pace — it’s already here for a few disorders — and we need to be prepared).
- On the study of pain and what matters most is understanding how it interferes with daily activity,
- Some thoughts on the experience of living with spontaneous XLH compared to living with inherited XLH
- A terrible, horrible, no good, very bad XLH treatment
- A little bit of good news for the XLH community, in case you need cheering up!
And now I’m officially on vacation!
***
Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
If you’d prefer to read this blog as a newsletter, sent straight to your inbox, please sign up here.