the MS muse

Monday, July 17, 2017

This Month: July 2017, part 1

Oh look, here we are again and I never did a part two for June. The long and short of it is that things remained relatively not good. But then I had a new nephew enter the world and that helped cheer me up. And then I got to meet him for a few days. And that was wonderful. But the trip wore me out and now it's back to the daily grind.

Healthwise, I'm still stuck in kidney stone limbo. Still feeling periods of significant discomfort. Still peeing into a strainer. If you're counting, this is Day 42. And I had that very special test at the Urologist's office. It was pretty much the worst and I will tell you all about it soon, I promise. The result was an official diagnosis that basically means I'm bad at peeing. Which I already knew. Thanks, MS!

The view from here:

baby's first facetiming with auntie

sent a gift to my niece upon birth of her cuz

post storm pretty

my friend is kinda okay at gardening ;-)

okay, scratch that, REALLY good. it's so joyful to see her gardens.
minus the mosquitos, of course.

I CANNOT EVEN TELL YOU HOW EXCITED I WAS TO SEE THIS!
MY NEURO'S OFFICE HAS GOTTEN RID OF THE HUMAN CHECK-IN DESK!
(I found all the check-in ladies to be judgy and not very friendly or helpful.)
THIS IS SO MUCH BETTER!!!!!!!!

hey veins

post Tysabri treat at a favorite sandwich place from college days

this doggie liked our horn jams

I have been waiting my whole life to have a baby boy to buy bowties for!

poetry in the waiting room before the most terrifying appointment of my life.

look what I found!

my friend Heather bought me a TON of disposable pee filters.
using these in public restrooms is the worst but it's so nice to be able to throw it out, unlike the plastic ones!
more on this unique and fabulous gift later.

I'm that person taking cloud pictures nonstop all flight, every flight.

life dream fulfilled! can't wait to see him in it in a few months.

lots of baby + pup sleeping shots

how cute is this nursery? my sis painted the mural.

pup always checking on the bambino. so cute.

my pretty mom is the world's greatest grandmother.

an origami bowtie for the lil man

she thought my book would be a comfy place to rest her head

had an afternoon free when mama + baby were at doctor, so saw another monument: MLK Memorial

Out of a mountain of despair, a stone of hope.
powerful.

IT FINALLY HAPPENED! she rested her head on one foot. next time, it better be both feet.

I know, I look good with a baby in my arms.

lots of hand positions in the course of 30 minutes

back home where there are no baby boys but there is bountiful basil

new favorite thing in the world: long-distance book club with my niece.
this book had an MS component and I plan to write about it soon.

I literally took 1,000 pictures when I was in DC to meet my nephew but I tried to hold back here. :-)

I hinted at three different posts that will be coming your way. Just stating it here again as a way to try to force myself to actually write them! Plus there's still the last two posts in the Symptoms Series.

I told my niece that I was going to be writing one of them and she said, "What? You do stuff other than post pictures on your blog?" The chagrin I felt will hopefully propel me to write more.

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.

perfection

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: