Friday, June 16, 2017

This Month: June 2017, part 1

Hey there, folks. So far, June has been pretty rough. The higher-than-normal levels of nerve pain post-relapse have remained higher-than-normal but there have been more okay-to-good days in the mix which is good.

Then, 10 days ago I went to the ER after sudden and severe pain on my right side that lasted for several hours and found out I had a decent sized kidney stone on my right side. A week of mild-discomfort-to-severe-pain followed. A few days were BAD. After a week, I saw a urologist (adding to my collection of -ists!) and learned there was another smaller stone on the opposite kidney. And that a big ovarian cyst is dilating the right kidney and putting a lot of pressure on the ureter, complicating everything. And then, during the exam, I learned that the ol' MS bladder dysfunction I've spent years pretending isn't a problem is very much still a problem and one that needs to be handled. So current life = usually uncomfortable with pain that is sometimes severe, going to the bathroom constantly and peeing in a strainer, waiting for the stones to pass, and dreading some upcoming bladder tests that sound like so much fun. This was the quick, summarized version of this story. A post or two will be coming about this in more detail. Because I have a lot of feelings.

Good things so far in June:

It's been pretty crappy overall, but I'm choosing to celebrate and feel gratitude for the parts that have been wonderful:

  • catching up with HS-and-college-friend Blair
  • seeing friend Ramona's magnificent dance show
  • playing a symphony concert in the park and surviving thanks to a wonderful window of almost no kidney pain
  • a lovely conversation and meal with friend Gwen after the concert
  • a great book by a favorite author (Hallelujah Anyway by Anne Lamott) with an EXQUISITE design! even if I didn't love the book, every detail of the design of the book just makes me happy. (color! fonts! book shape/dimensions! the FEEL of the pages!)
  • a perfect afternoon sitting in the backyard with my mom, reading our books, eating raspberries, enjoying the perfect temperature and light breeze and birdsong, and the perfect blue sky and fluffy clouds and green trees
  • talking to my sistar on the phone for a whole hour!

The view from here:

this is my pee strainer. I love it so much.

living on the parade route is great because you can just step onto the
front step when you hear a band and then go back inside.


story of my life.

Friday, June 2, 2017

This Month: May 2017, part 2

The MS Update

Things are okay. They've continued to improve but I'm not yet back to normal. I'm still struggling with significantly elevated pain and major trouble sleeping because of it. So pain and fatigue have been winning on most days. I'm going to give it another month, at which point I may try adding a new med if it continues like this.

My best medicine (my niece) came to town for about 40 hours total. That helped a lot. She is a balm for the spirit, for sure. It also wore me out, but it was worth it.

The view from here:
finally got around to planting some cilantro and basil

goat cheese and spinach frittata with sriracha

got some sweet new paper from my sistar

might not look pretty, but this coconut curry is crazy delish

a good book helps pass the hours of infusion time

this month's Tysabri treat: favorite sandwich place, Grand Junction!

peony for your thoughts!

cloud love

my mom's childhood church

take me home, country roads

so glad cloud season is back

on the drive

in which a little puppy and a giant cat become friends

my heart

nice stick

playing volleyball with my girl

the best

this stuffed cat's name is Crenshaw

I gave her this 3D pen for her birthday

so fun! I doodled my name. 

cookie time!

had my bro grill and then it started pouring rain but he made it work

why just take a walk when you can dance with an umbrella?

my niece's book has a character with MS! so now I'm getting it from the library
and we're going to have a long-distance book club via Skype

watching Mako Mermaids

aren't they cute?

goodbye hug...saying goodbye is the WORST

I guess I should go to the dentist


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!