Wednesday, October 18, 2017

The reason I write

Oh, it's been a while. Like a year and a half. I've been busy being a mom, full time HR guru, Parent Council President, hockey mom, swimming mom and working through all this with a very flare-y arthritis-ridden body. It's been a roller coaster of flares, prednisone (up to 50 mg per day!) and failing out of 3 biologics. Goddamit. I'm crying just writing this. 

I'm trying a new style of writing with this re-invigoration of my blog - less editing, more stream of conscientious, more raw honesty. We'll see how this goes. 

We had some people over on Saturday - hockey team parents - for a get to know you gathering. Nice people, good event. We talked about kids, work, hockey and then started discussing where we went to school and what we studied. I have a writing degree and someone asked if I write outside of work. Well, I offered up that I had kept a blog chronicling my RA journey. 

One of the ladies eyes lit up at the mention of Rheumatoid Arthritis and launched right into all the diet changes she's made that have taken her off all her meds and now she has no symptoms for her Psoriatic Arthritis. I commented that I had tried that path with limited success. She pursued the conversation.

Sigh.

I tried to find my grace as a host and a human being, but I’m sure a trace amount of annoyance came through as I felt needed to defend my health choices to a total stranger, in my house, in front of my guests. I used words like “nine shoulder surgeries” and “severe rheumatoid arthritis” and “26 years”, but no – apparently diet changes and going gluten-free are going to solve all of my problems and get me off all of my meds. 

This is why – for years – I didn’t tell people about my RA, didn't write about it, didn't Facebook it. Nothing. Nada. I don’t have the energy or patience to educate or explain my disease to strangers who really don’t get it. Nor should I feel the need to defend my health choices to complete strangers. But I did feel the need to defend my choices. This conversation upset me so much, I’m back at the keyboard looking for some therapy.

I have tried alternative and traditional therapies, diet changes, supplements, acupuncture, laser therapy, massage therapy, a complete elimination of all grains and dairy – all with minimal to no success. The effort required was not worth the minuscule improvements I saw in my health. And - frankly - it's none of anyone's business how I approach my health.  

It's four days later and I'm still frustrated by how much this has gotten under my skin. One of my favourite songs from the past year has been "Float On" by Modest Mouse. It's about moving on despite setbacks you might have. That's me. Trying to float on with my RA. 

2 comments:

  1. It isn't anybody else's business, and you don't need to defend your choices. Maybe try telling yourself that maybe she's a socially tone-deaf person who was just overly enthusiastic about what worked for her?

    And also remember what you already know: RA and PSA are not the same thing. Heck, diet/GF does not work for many people with PSA. If it worked for her, that's great, but her experience is not a common one.

    ReplyDelete
  2. Well that's infuriating. Apparently gluten-free can't cure stupid.

    ReplyDelete