Tuesday, May 16, 2017

This Month: May 2017, part 1

Hey there, blogland. I guess I missed the April part 2 post, what with feeling like I got hit by a bus and then dragged by that bus up a mountain and then left there to limp back down. So this post will cover the second half of April and the first half of May.

The MS Update
The last you heard, I had some new lesions, and then I was having a relapse, then things got worse, then they got a bit better, and then I was preparing for an intense week of playing in the symphony. Things did continue to improve, to the point where my walking wasn't noticeably (I don't think) impaired anymore. I was still in an extraordinary amount of pain and still had some weakness.

In the middle of symphony week, I learned I had a few new spinal lesions as well after another round of MRIs. I was offered steroids but decided against it, for many reasons.

Nonetheless, I survived symphony week. The concert was Rite of Spring, which is a challenging thing to play, both mentally and physically. I didn't play perfectly by any means, but I feel pretty proud of how well I did, especially considering how I was feeling. And I survived climbing up and down precarious risers when my leg strength and stability were both questionable, an accomplishment in and of itself. And I did even manage to have some fun. Maybe not as much fun as I could have had playing this piece with these people, but more than I expected to be able to have given how I was feeling.

Symphony weeks always wear me out. It generally takes me at least a week to recover. This time was a thousand times worse. It was a huge accomplishment for me to just get through the week, but the recovery from the week has been monstrous. In the two weeks after symphony week, I left the house exactly three times (once to see a movie with a friend, once for my Tysabri infusion, and once for a 30-minute meeting). I did a little bit of work on my couch, but it wasn't a very productive stretch. Yet I felt like I had been working 80 hour weeks and running marathons or climbing Everest on the weekends.

This is in large part because the MS itself hasn't fully settled down, though it does continue to improve. The pain is still at pretty extreme levels most of the time. I'm not sleeping well at all because of it. On top of the regular MS fatigue plus the relapse-exacerbated fatigue, I'm not exactly bursting with energy.

I've had pain from knees-down for years, but had gotten to a place where it was managed fairly well (minus a handful of bad days a month) with meds and various coping strategies. The pain is now hips to toes and the meds aren't doing all that much most of the time. I cannot take more meds than I'm taking now as I'm already taking the maximum (and way above the FDA-recommended max for one drug) amount I can safely take. Needless to say, I'm terrified that this level of pain is going to be my new normal. I've had a few days lately where it hasn't been quite as bad, so I'm hoping desperately that will start to happen more often.

The view from here:

rite of spring - haha, get it?

looking up backstage

still one of my favorite people to play with. it was fun to play this concert together.
she also sent me a text during the week that really helped boost my spirits. ❤️

just late April snow, nothing to see here

a few days before May, this is not something we should see!

come on veins, I need my drugs!

I do the website for this church.
The guy who designed this window has a special place in my heart related to college.
My college friends will recognize this style.

I will not watch the movies, but I am the kind of aunt who will
send a homemade" May the Fourth" card to a niece who loves them.

When you can't sleep all night because of pain, you watch the sunrise from the balcony.
Wearing the style first popularized by my sistar as a child, natch.

I photograph allllll the sunsets, but I'm never around for these and they are glorious, too.

the wind chimes and the birdsong make it even better!

a sweet postcard from my friend Ramona with a timely and much appreciated message:
"hoping you are finding ways to float above the pain and find peace and calm in beauty."
preparing to bloom...


Things I grilled:


Sugar snap peas!

Brussel sprouts!

Green beans!

Spinach and goat cheese frittata!