Thursday, May 23, 2019

Tuesday/RA Update

There's this little sound byte I hear on our radio news station very once in a while that goes something like this - -
"It feels like Tuesday..."
"Tuesday doesn't have a feel."

I heard this yesterday as I was heading from a late afternoon doctor's appointment to an evening Middle School event, feeling pretty miserable. And I couldn't help but think about how these days (because of one of my RA medications), Tuesday does have a feel and it's very much like the all-day morning sickness of pregnancy, except without the joyful anticipation of a newborn. Blegh.

Today, on a Wednesday, that seems like a terrible thing to write down -- what a complaint! It's not that bad, think of all the people going through much worse, etc. etc. But that's the thing about days like this -- they wear me out.


Last time I met with my doctor, I was feeling so much better. And so hopeful. (And it was a Thursday :)  The new medication I had started at the beginning of the year or so was working. I woke up one morning and I could touch my left pointer finger to the base of my thumb and I celebrated that huge, measurable progress! I was feeling so much better and so hopeful, even starting to imagine what it might be like to keep feeling better and better...

But then my progress kind of leveled out over the last couple months, and then the last few weeks I've just not been feeling well.  When I met with my doctor yesterday I was sick to my stomach from the medicine (Tuesday), worn out and achy from the arthritis, and discouraged with the lack of progress with my new medicine (Still very grateful -- but also discouraged.)

Probably it was great that I met with him on a Tuesday because I couldn't help but give a very honest report -- I'm worn out --  But, feeling a little embarrassed at my complaints,  I imagined when he left to set my next appointment that he'd be telling himself 'make sure not to schedule on a Tuesday again! 'But my appointment card returned with a Tuesday written in, and I felt so grateful.

Here's something about RA -- it's slow finding solutions. Medications take a long time to try out and see if they're working. We made some tweaks to mine -- keep going on the new one and hope for more relief,  a little less of the Tuesday-misery-inducing one :), x3 on the try-to-help-the-miserable-Tuesday-one-not-be-so-bad one, a little of another new one to try. And then we wait for 3 months and see what happens.

(Also --  My doctor shares an office with the oncology department. So, each time I have an appointment, I am overwhelmingly reminded that even though this is a hard thing to deal with, there are much harder things I could be dealing with.)


Today I woke up in recovery mode. Still a little sick, still the hardness of a regular morning. But, with the 'I can do this, remember all the good things' kinds of feelings back. Hopeful to think about new things and old things I know might help - things I can work on to feel better. Grateful to think of all the Tuesday moments yesterday that were still so sweet:

+ Sitting on my bed singing Old MacDonald and Sticky Bubblegum with Isaac and a friend I was watching for the day.

+ Resting on the couch and listening to the kids play together so happily, "Pretend I'm_____ and you're..."

+ Celebrating Landon and his hard work to keep a 4.0 this year in school.

+ Sitting at the kitchen counter, enjoying the busy-ness of after school time with all the kids plus a few friends over with Ellie to rehearse for a play a friend is creating.

+ Seeing Owen so proudly slicing up an orange - so happy for the new skill he'd learned.

+ A dinner of  soup and tortillas picked up by Jordan (along with all the kids) even with a long wait to get it.

+ And our warm cozy home, soft cozy bed on a cold rainy day.