Birthday Reflections

I'm writing this after midnight, so it's officially my birthday. I had good intentions of writing a 2016 year in review post but that never happened...so here is a look back at age 33 instead. My birthday always seems to trigger angsty, sad feelings, so I hope this doesn't get too dark.

This birthday will be spent, in large part, stressing/panicking about a med + insurance issue! This is the exact same story I wrote about here. I only got approved for one year then and now we're at that point again.  I have enough pills through Monday and not even close to the $1000 needed out-of-pocket for another month's worth and not really enough to buy even a week's worth. So please send all your thoughts/prayers/good vibrations/etc. my way or to the evil, evil insurance jerks. Because I truly cannot handle withdrawal from this med again. I have very little, if any, hope that this will be resolved by the time the drugs run out. Because these things ALWAYS move at a snail's pace. No matter how on top of it and proactive you are. :-(

MS
This year, I "celebrated" my 10 year anniversary with the disease.

It was by no means my worst year ever with this disease, but it also definitely wasn't the best. Though the flare-ups I had this year weren't completely devastating, they were bad enough. And the MRI results WERE completely devastating. On the positive side, the MS crap and awful MRIs meant going back on my beloved Tysabri. And things got much better pretty quickly. And so far, I remain JC-free. I worry about if/when I may become JC-positive, though, and how to make the decision about what to do then.

Overall, I feel like a lot of the "little" stuff is just ever so slowly moving in the wrong direction. Things like fatigue/lassitude/brain fog/mental clarity/coordination/balance. And recovery time after I push myself and do too much. It's like you don't necessarily notice how your appearance changes until you see a picture of yourself from X years ago. But when I reflect on a year ago or five years ago, it really feels like things are just worse. I suppose it can be explained by the slow and steady onslaught the disease has waged against my brain for a decade and especially the few really hard hits in the past two years. But it's a very depressing thing to reflect on. How much further down this path will I be in another year or five years?

This blog
I wrote 71 posts in 2016, my most prodigious year yet. Mostly the weekly, photo-heavy look at my life, but also 8 posts in my series about my MS symptoms

• Weakness
• Cognitive Challenges
• Pruritis
• Paresthesias
• Fatigue & Lassitude
• Trouble Walking
• Diplopia
• Bowel + Bladder Problems

And a few other random MS posts:

• My MS-related Thoughts on the Election :-(
• 10 Years Ago This Month...
• A Tribute to My Mom, Who Makes MS Easier
• An Ode to My Favorite Fictional President, Jed Bartlet (Who Has MS)
• Magazine Monday: Jamie-Lynn Sigler
• Texts from Chronic Pain
• Lyrica Insurance Saga: Sweet Resolution At Last, 

I made zero progress on two MS-related projects I hinted at over a year ago. :-( Maybe this year?

Analytics show that my most popular post during the past year was, naturally, the one about bathroom problems!

I'm hoping I didn't lose too many readers this year who come here for the MS stuff and didn't want to see so many sunset pictures. I need to find the balance.


Adventures

• a week in Michigan doing things like kayaking with my friend Heather
• niece time! visiting her, her visiting me, summer roadtrip-capped week o' fun
• a week in DC with my sister and my mom
• a fun (minus the initial flight nightmare) road trip adventure with my friend Heather from California to Minnesota
• time with friends: Gwen and a few others
• (mostly) weekly fun playing my horn with a few local friends - duets and trios and lots of talking and laughing
• taking 8 zillion pictures of amazing sunsets and spectacular clouds

Terrible Things

• the election and its aftermath
• continual major financial stressors
• big decisions that still need to be made that are ever so hard to make
• feeling like I accomplished pretty much nothing all year

Books
I only read 40 books in 2016, which is way too low of a number for me. :-( The breakdown was 29 fiction and 11 nonfiction. So far in 2017, I've read.....zero books. Excuse me while I slink off to hang my head in shame.

Professional

• Crossed the 100-sales mark in my Etsy shop and had several sales outside of Etsy. A lot of positives in the origami part of my "career" but I still haven't done half of the things I planned to do. 
• Huge, crappy changes in my job teaching online courses...as in, that's over.
• Main source of income these days is writing. (This is making it harder than ever to find the time/energy/brainpower to write here.) It's often fun, interesting work, but it's also stressful to have to reach a certain quota of work to get by. :-\
• Doing a fair amount of web work as well, and in theory, I plan to ramp up that business to offset some of the writing.
• Still getting paid to play my horn periodically. Wish it was more often, but I'm happy that it's still happening at all. Also loving just playing for fun with friends regularly.
• The Daily Quipple is still chugging along.

Overall Reflections

It's been a pretty stressful year overall, and I don't necessarily see that letting up anytime soon. 

I feel like I've barely accomplished anything, even though I know several of my not at all objective readers will try to make the case that I've done a lot. I'm struggling not just with my productivity and accomplishments, but also considering whether I've been a good friend/daughter/sister/aunt/blogger this year. In the midst of my annual birthday funk, I'd say the answer is no. Those same people will argue this point with me as well, but I just feel like I could have and should have been better. I can say with certainty that I haven't been a very good friend to myself.

Next Year

I'm typically the kind of person that if I set an actual goal or resolution, that almost guarantees that I will not follow through on it. Last year, I said I was going to write on here weekly and I stuck to that. And now I'm kinda sorta committed to writing on here at least a few times a month this year. 

My other goals/resolutions mostly fizzled or stayed stagnant last year, so I'm not making many this year.

The only other goal I've committed to this year is to write a letter to my niece every single week.

Anyway, see ya later 33. Hope you're good to me, 34.

I have the birthday funk, but luckily I have this cure-all remedy:

10 Years Ago This Month...

10 years ago in June, MS was already raging within me. It would take a few more months and things getting significantly worse before I would go to the doctor for the first time. But 10 years ago in June, my right leg was quite numb most of the time. It was an often painful, weird feeling. I play horn and when I played with the bell on my leg, it was agonizing. Sometimes it was less of a numb feeling and more of a pins-and-needles, my leg just fell asleep kind of feeling. Sometimes it wasn't just my right leg and foot, but my right arm and hand crashed the party as well. Again, since I play the horn, I noticed this particularly when playing the horn. I convinced myself that I just now had developed an allergy to nickel silver. I started doing research on how I could deal with this new allergy.

I told myself stories about what it could be. Not catastrophizing worst-case kind of stories, but more like, this-is-totally-normal kind of stories.These weird symptoms seemed to come and go a little bit or rather, sometimes be way less or way more intense. I didn't put it together then that heat was a big factor in swinging things to the worse side.

I eventually started to Google these symptoms, but didn't have a whole lot of luck, in part because I struggled to come up with the right search terms. I had enough trouble describing to myself what was going on. I talked to a few horn friends about the supposed allergy thing. It would still be almost 2 months before I told another person the whole story, when I mentioned to my mom in a by-the-way kind of way as I was preparing to hop in the car to drive 12 hours by myself that "My right leg has been numb for a few months now!" I'm sure she really loved how I chose to deliver that one.

By the end of August and beginning of September, things were very different. I was falling down and having a whole lot of difficulty walking. I eventually went to the doctor and I eventually got a diagnosis. But 10 years ago this month, I was living in semi-blissful ignorance. I, of course, wish now that I had gone in sooner and thus gotten on a drug that worked sooner and prevented so much of the awful damage that was done to my brain and spinal cord during this time. The often severe chronic nerve pain I live with to this day - could that have been prevented if I had recognized sooner that a constantly numb leg might be something to deal with? Probably not, but maybe.

But I'm also a little jealous of 10-years-ago me, who (despite my numb leg) had all kinds of dreams and plans that I thought I could achieve. [Current me, of course, still has dreams and plans, too. They've just changed, by necessity. And my belief that I can achieve them is probably not as strong.] That girl who had no idea of the onslaught of financial and insurance related hell that was soon to fall down upon her for probably the rest of her life. The girl who was just a student, halfway through her Master's degree. The girl who was young and healthy and independent.

Anyway, happy sorta-approximate MS anniversary to me! I'll be celebrating the *official* 10 year anniversary in September when I was diagnosed, but if you want to send gifts now, I'm told that the traditional gifts for a 10 year anniversary are tin/aluminum and the modern gifts are diamond jewelry. I'll accept either, just know that if you give me diamond jewelry I'll almost certainly sell it for cash because diamonds are NOT this girl's best friend. ;-) And, of course, I could use that cash to pay my medical bills.

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!]

This Week in My Life: Week 10 of 2016

The view from here:

baby pinecones

digging these early signs of life

afternoon sun peeking through the gloom

rainy day

MRI time
It was awesome. I love MRIs (for real, I know I'm weird).

hospital art

Steroids Day 1

Steroids Day 2

Steroids Day 3

On the steroids:

Today is my last of a 3-day course of oral steroids for this relapse. I very much prefer oral to the intravenous. I've done compounded versions in the past, but my current crappy insurance naturally won't cover it, so I'm taking 25 50mg Prednisone pills a day. They are the worst. Taking them with pudding helps.

I feel as awful as always when I'm on steroids, though I've forgotten how bad this level of awful actually is since it's been 8.5 years or so since I last took them. I even experienced quite a lot of vomiting on Day 1 this time, which was new. (Not right away after taking them, luckily, so they stayed down. It was about 14 hours afterwards.)

Pretty much no sleep. Killer headache. Irritability, though it seems like not as bad as in the past. Nausea.

The big bummer in this story, though, is that my left-side weakness has not improved at all yet. (Well, maybe a little bit, but it's still fairly bad.) It seems like symptoms improved pretty immediately in the past, so this is concerning.

I've also been having intermittent awful periods of vertigo, though this technically started a few days before the steroids, so I have to blame the MS itself, and not the steroids for this one. But horrible room-spinning doesn't help at all when I'm feeling this crappy from the drugs.

I really can't believe that I did this steroid thing around 7 times back in the day WHILE going to grad school full time and working as a teaching assistant and teaching a bunch of private lessons. How did I do that?

The car saga non-update:

The car saga update I mentioned last week (the return of the original problematic symptoms) doesn't really have an update yet. The problems haven't been happening consistently. Fairly bad sometimes, relatively nonexistent other times. And not all of the symptoms have returned. The most concerning of them aren't happening, which makes it at least drivable. So I've delayed doing anything about it, at least until the next paycheck.

What I made this week:

dollar bill origami camera!

What I read this week:

Not much of anything, sadly. Reading on steroids doesn't work that well. Started Divergent.

This Week in My Life: Week 9 of 2016

The view from here:

This one's for you, Heather!
I went to a place I never go to except when you're home to eat a free birthday breakfast.

got a much-needed haircut, bringing back the side bang for the first time in a while

an awesome package of birthday goodies from my sistar:
my fave ginger mints, a cool clay face mask, homemade hot sauce, and
THE MOST AMAZING COOKIES EVER!!!!!!!!!!!!

the view from the neuro waiting room

The next chapter in the crappy car saga:

After spending $550 10 days ago and the car seeming to be fixed, as of yesterday the original problems are back!!!!!!!!!!!!!!! UNACCEPTABLE, Subie!!! (Subie is my car's name.) Taking her in on Monday. Hopefully by next week, this unending craptastic story will be concluded for good.

On the MS front:

The left arm weakness continued and the left leg joined the party. I couldn't get into the neuro until yesterday. The neuro exam was pretty funny during all the push/pull or don't let me push/pull parts. Right side did its job, left side was immediately defeated. Here's a video of some of the weakness in action:

The results of the appt: it's a relapse/flareup/exacerbation/bad-thing (DUH), going to get an MRI right away then start steroids (OH JOY), going to stop the Aubagio posthaste, almost certainly going back to Tysabri. I'll keep you posted!

What I read this week:

I hadn't realized that I haven't received any issues of Momentum since I moved a year ago until I saw this issue in the waiting room yesterday. Flipped through it and read the pain article seen on the cover. Nice to see the validation of this as it's a major problem for me and one that wasn't really known or talked about much until relatively recently. Didn't really learn anything new except for the idea of Botox injections for pain. The lady quoted about it has leg pain that sounded an awful lot like mine, so I'm very intrigued.

Really enjoyed this blog post by Robert. Loving as always, Kate's monthly email newsletters.

Finished Playing With Fire. Definitely different from her usual books, but really liked it.

Read What She Knew, by the mom of the kid who plays Timothy on one of my favorite shows, Call the Midwife. Loved it.

Read A Curious Mind. It was okay with some interesting stories, but overall not nearly as good as I was anticipating.

5 Things Friday: 5 Reasons I Haven't Been Posting Much

It's been awhile once again. Life has been busy, probably busier than it should be. Here are some of the things that have been keeping me busy:

1. My mother, sister, and I launched a new fun project and business venture, The Daily Quipple. Each day features a cartoon (a quipple!) drawn by my fabulously talented sister, Traci. Our mission is to share a daily jolt of fun and/or inspiration with the world, so please check it out for some fun and inspiration! We also sell merchandise featuring the quipples. This project is fun and rewarding, but has added plenty of work to my workload. I do all the web stuff. Here are some of my favorite quipples so far:

     

2. The dreaded day of disclosure is done. I've been working up to for a while the idea of disclosing my MS to the two colleagues I work most closely with. It is at the point that they probably should know, and while I knew they would be great about it, I put off the telling for a long time. I put it off mostly because working at this job was like a beautiful haven where MS wasn't a part of the picture. Of course, I knew about it, and was still very much aware of its effect on me and my work, but the fact that no one else knew made me feel like the healthy, young, energetic professional they all saw me as. This was a really wonderful feeling, as the disease occupies far too much space in the majority of areas of my life. Anyway, I told them and they reacted just as I knew they would. I'm glad I told them, even though I cried during the telling. (For those who don't know me personally, this is a HUGE deal. I've gone 6-7 years without crying at all in the recent past, and I haven't cried in front of another person for much longer, and in front of a person outside my very small circle pretty much ever.)

3. Fall is my favorite season (except for its ridiculously short duration, at least here in the tundra) and luckily I have been able to spend some time enjoying the colors and temps.

                            

and luckily my favorite adventure buddy was with me!

4. Remember my 30x30 list? I'm feeling pretty bummed out that it is looking like a truly impossible feat to complete my ridiculously ambitious list by the time of my 30th birthday in around 4 months. I haven't even posted the list here or anywhere else yet, but trust me, it is an ambitious list for anybody to tackle in one year, much less a person with 3+ jobs and MS and other assorted health challenges. But who knows? Maybe I'll rally and fight like crazy to defy MS and life in general and finish the thing. My always wise mother suggests that I just extend the deadline until the end of my 30th year. That feels a little bit like cheating, though, and upsets my perfectionist and overachiever qualities. However, it looks like that might have to be the answer.

5. In addition to neglecting this blog, I'm also woefully behind on chats with friends (Heather and Gwen, I'm talking about you and hopefully will soon talk to you!) and behind on reading the several MS blogs I follow, so that's where I'm headed now!

Hope you all have a lovely weekend!

                            

A 6-sentence Story

For me, 2006 was an eventful year. 

First, a joyous event: my niece was born! 

Then, an unpleasant visitor arrived: multiple sclerosis. 

Six years later, both are still big parts of my life. 

When MS drags me down, she cheers me up!

She makes me want to fight, laugh, and hope in the face of this disease.

Because of her, 2006 will always be a special (rather than awful) year.

This post brought to you by HAWMC prompt of the day:

Tell a story in six sentences.

my unlikely muse

In my family, we often refer to my MS as our uninvited or unwelcome guest. The disease is undeniably a part of our lives, and we would all certainly prefer that it wasn't. However, the disease has another, more positive, presence in my life: it's my muse. It is a source of inspiration and thoughts that probably never would have entered my life otherwise. I've always tended to bristle a bit when I hear people describe various diseases, maladies, or circumstances as great gifts. I still have a bit of a problem with that description, and if MS is a gift, it's one I'd like to return.

But I get it now. The MS itself is not a gift and is not something I'm grateful for. But the part of the MS that serves as a positive source of inspiration in my life is very much something I have gratitude for. I can't promise that this blog won't contain any of my laments or worries related to this disease, but I do promise that this blog is written under the guidance of that positive place I have found: MS as muse. I hope to "re-gift" my MS into a positive force in my life and the lives of others. Thanks for reading!