Saturday, May 28, 2016

This Week in My Life: Week 21 of 2016

The view from here:

I started my daily Vitamin D practice (getting 20-ish minutes of direct sun without sunscreen) this week, though it was rainy/cloudy a few of the days. It's been nice, especially since I use this as a time to read, something I have not had much time at all to do this week otherwise.

Where I get my vitamin D. A cozy little backyard patio.

Blissful reading time.

Grilled a few times this week. Love grilling season!

What I made this week:

A few different frittatas. This is a Greek one, with sun-dried tomatoes, spinach, and feta.

Still all elephants, all the time up in here.

Except not really, since (for a custom order) I'm also folding horses, butterflies, foxes,
rabbits, dinosaurs, flowers, pigs, fish, and a few other creatures.
This is a swallow, a bird I HATE for it's-kind-of-a-long-story reasons.
But it's also a bird that makes me laugh because a lady I used to
live near once warned me to "Beware the swallows!!"

P.S. HEATHER - do you recognize the "folding table" I'm using here??
[Yes, I'm trying to trick you into commenting again. ;-) ]

On the MS front:

Nothing really. But I did forget to mention one thing in last week's post. At the pre-Tysabri infusion doc appointment, my RIGHT leg kind of failed part of the neuro exam. As in not the leg that was super weak a bit ago, but the other one! I hadn't noticed anything in real life, so I was pretty surprised at how poorly it failed the test. I still don't really notice anything, but I guess I haven't exactly done a "leg day" at the gym in a while. Just walking around and sitting/standing work just fine. Hopefully it will be cleared up by the time of my next appointment. In general, though, the Tysabri is doing it's job. At the last appt, the doc said that I should be a spokesperson for Tysabri because it just works for me in a way nothing else does. (If you're reading this, Biogen, call me! ;) ) All the other crap like constant tingling and numbness, and bladder stuff, and weakness, and relapses are gone gone gone. (I'm choosing to ignore the current weird right leg thing.)

Hosta la vista!!

Saturday, May 21, 2016

This Week in My Life: Week 20 of 2016

Wow, we're already TWENTY weeks into the year? And I've posted consistently for 20 weeks now? Both facts seem shocking. 

The view from here:

still plugging away on that big origami magnet order
Tysabri Round 2: Infusion 2
(I didn't keep track of my infusion count the last time around, but I'm going to try to this time.
Total count for lifetime infusions is getting close to 100, by my rough calculations.)
How cool is this vein light??? I had never seen this before.
My veins are usually great, but this time the nurse #1 stuck me 3 times before giving up.
The replacement nurse used this thing and got it right in.
Right in my wrist, though, which was a weird location.

when the nurse walks in on you taking silly selfies with the MS posters

and it's not just any DQ, people, it is a nationally-recognized-for-being-the-best DQ.
(I honestly only go here maybe 5 times in a year, but this is an area where Yelp is not used
by many people...but I'll still take the victory and wear the crown with pride.)

backyard pretties

more backyard pretties

first time grilling this season!

What I read this week:

Insurgent by Veronica Roth. And the final book in the trilogy is waiting for me at the library!

I mentioned the blog Tripping on Air the other week. Great writing and such a great blog name! Another new-to-me MS blog that I've been reading this week (thanks to author Spencer leaving a comment on my Mother's Day post) is Across the Blood-Brain Barrier, another awesome name for an MS blog. Spencer has a relatively new diagnosis, though he's had symptoms on and off for 17 years. Welcome to the MS family! I guess it's like being adopted by really crappy parents, but you now have lots of cool siblings who can help you deal with it all. Spencer is going it without any drug for now (which I have some pretty strong mixed feelings about, but it's his decision, of course), but I love this post on the best treatments for MS. Right on!

Saturday, May 14, 2016

This Week in My Life: Week 19 of 2016

This will probably be a short post. It's been a stressful week with a lot (probably too much) on my plate, and the end of the craziness is not yet in sight.

The view from here:

Making progress on that huge order I talked about last week.

Only 299 things left to grade in the next few days for the online University course I teach.
That number used to be quite a bit higher, but it still feels way too high.

Told you this would be short. I'm off to continue grading and folding elephants!

Sunday, May 8, 2016

A Tribute to My Mom, Who Makes MS Easier

Happy Mother's Day to all of the mothers out there, but especially to my mom! You may have read her guest post and seen me mention her from time to time on this blog, but I thought it high time to write a little bit here about not only just how great of a person and mother she is generally, but also about how incredible she has been throughout these last almost-10 years with MS as a support, an advocate, a caregiver, and a friend.

From The Daily Quipple. Check out today's Mother's Day quipple as well!

My mom is truly the best person I know. She's a woman of integrity who is full of compassion and love for others, and she has a fabulous sense of humor. My siblings and I had great childhoods, even during difficult times, because she made sure of it. I could go on and on with more details and stories about how great she is, but I'll move on to the MS-relevant side of things.

I realize I've never fully shared my diagnosis story or all that much about the early days with the disease on here. It's something I plan to do soon, in conjunction with the upcoming 10-year anniversary of my diagnosis. But I'll talk a bit about those early days right now. I was going into my second year of grad school in Michigan (12 hours away from home in Minnesota) when I knew something was wrong. I really had known something was wrong for months, but it wasn't until just before the school year started that things were getting worse and I knew I couldn't deny it any longer. I called my mom and told her what was going on and I went to clinic on campus that day at her behest. The symptoms weren't super active at the time I was at the clinic, and the doctor I saw pretty much just sent me home. A few days later, my mom was there with me. And she saw me very rapidly deteriorate before her eyes. When I went back to the doctor a few days later, I failed the neuro exam spectacularly and was told I needed to see a neurologist and have an MRI immediately. The diagnosis was pretty devastating to both of us, perhaps especially so because neither of us knew much of anything about the disease. My mom checked out every book in library about MS and we both did a lot of reading.

She was with me through the first steroid infusions and put up with me during my extremely agitated and sleepless steroid state. She drove me 12 hours to my home state to see an MS specialist neuro (at the recommendation of the local neuro).  She drove me back to Michigan. She saw me through more steroids. She ended up taking a leave from her job and essentially moved in with me in Michigan for several months, because I was unwilling to quit grad school despite the doctor recommending that I maybe should. Since I was having trouble walking and having trouble with my vision and with my bladder and everything was just exhausting and hard (and grad school is exhausting and hard to begin with) and I needed help, she was there. To support me in continuing to pursue my dreams and goals even when it was sometimes feeling pointless. To support me in dealing with my new life and this new strange thing taking over my body. She wasn't with me the whole year, but she was there quite a lot, and I don't think I could have done it without her. I finished the school year, having earned my Master's degree and a few extra honors to boot, largely thanks to my mom and her support.

That was only the beginning, though, and my mom has been just as vital since then. She's been there as I tried drugs that didn't work, and she's helped me as I made decisions about what drug to try next. She has stood up for me to those of the "but you look so good" camp. She's really the only one, other than my neuros, who saw me at my absolute worst, and plenty of my not--the-absolute-worst-but-still-bad times. She's the only one in my life who really, truly knows what this disease looks like, or can look like, up close. She has born witness, which feels like an important and powerful thing to me. It makes me feel less of that certain kind of lonely that life with this disease can make a person feel. She's in this with me, and has been from day one.

Thanks, Mom. For being awesome and funny and the best mother. But also for being with me on this wild MS ride, and making sure I don't fall off. For sharing the load, and then some. For laughing with me and crying with me. For continuing to support me as I follow my dreams and I pursue my goals. I desperately hope there's a cure for MS someday, certainly, but in the meantime my greatest hope is that all people with MS have someone like you in their lives. It makes it a whole lot easier.

Sure, I could have shared a nice picture, but I chose this one for a few reasons:
1. What am I doing?! Apparently turning around to look at something
my mom is pointing at. But why in such a weird, theatrical way?
2. This picture is taken in our favorite place in the world, Colorado.
And on a trail with especially important memories.
3. I didn't ask permission first to share a picture of her, and I figured this one
would be safe, as it's not too close up, and the focus is on my weirdness.
[But I'll take this down if you want, mom!]

Saturday, May 7, 2016

This Week in My Life: Week 18 of 2016

The view from here:

Let the light shine in.

A church in the neighborhood always leaves a little May Day gift at the houses in the area.
This year it was these pretty flowers, freshly transplanted into a backyard flowerbed.

That bush that I was worried about missing its bloom finally bloomed.
It was a lovely 2-3 days. Wish it lasted longer.

Flowering tree at the library.

That new Spring green against the blue sky. Ahh.

Drove by one of my many dream homes today.
At least 3 of my regular readers might know where this house is. Any guesses?

What I made this week:

A few different versions of this delicious frittata with lots of
veggies, herbs, and plenty of ooey-gooey pepperjack cheese.

Elephants for a wedding.

Cats for a wedding.

So many white elephants. Seen here in progress while a passenger in a car.

some finished cup holder elephants

Amazing thing that happened this week:

Related to the origami pictures above, I had an amazing week of origami sales. Two large-ish wedding-related orders, and then a HUGE order to a luxury hotel. Over $1000 in sales of ORIGAMI in ONE WEEK. What?! That's something I never could have imagined in a million years, either as a 10 year old struggling to learn how to fold a crane from a library book or the adult me of a few years ago who started folding again for stress relief and then decided to open an etsy shop in part just to get rid of the huge piles of paper animals I'd created. I hardly expect that this kind of sales week will be a regular occurrence (though the huge hotel order will probably be a recurring one), but I am heartened at the possibilities for what I can do with this little hobby side business. And this week's sales are a major blessing coming after several months in a row of unexpected financial burden and just before the summer semester of teaching, which pays less than the rest of the year. I can breathe a sigh of relief after this week. 

What I read this week:

What I learned this week:

To say that I'm not a morning person is an understatement. So, having almost never been outside during the early morning hours, I had NO IDEA that dandelions closed up at night. I was baffled this morning when I headed out to the car and walked through the backyard (that just yesterday had been a sea of yellow) but saw no dandelions. Kinda blew my mind to learn this little fact that most of y'all probably already knew. But in case you didn't....dandelions close up at night!!

On the MS front:

Nothing to really report. The bladder situation has significantly improved, and no other weird things have been going on. I hope it's been a similarly MS-problem-free kind of week for the rest of you as well!