Friday, October 19, 2012

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:

I love this day!  Be grateful.I love Fall. The turtle says, "I have decided to be happy because it's good for my health."  "If your ship doesn't come in, swim out to it." -Jonathan WintersReclaiming the belly laugh can cure a world of woes.

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!
           Happy Happy Weekend!                 

Friday, September 7, 2012

On Self-Medicating

Tonight's fun math equation:
Large Iced Coffee x 2 + Grande Iced Latte + Starbucks Doubleshot + 2 amphetamine pills taken later in the day than advisable = sleep tonight? doubtful.

But - in my perhaps biased opinion - necessary and worth it to get through my day. Why? Another equation for you:
long day with busy schedule + haven't been sleeping well generally this week + you know, that whole MS thing + the energy/focus depletion side effects of various meds used for chronic nerve pain secondary to that whole MS thing = why i need a little help on days like today

So, tonight might be a sleepless one. I only wish I could use all that non-sleeping time to get things done, but I don't think my focusing skills will last very long. I will probably spend far too much time with my friends Hulu and Netflix into the wee hours. But hopefully sleep will come to me before morning!



Tuesday, August 21, 2012

My night

Tonight I'm playing some blues, funk, soul, disco, and classic rock in an orchestra backing up a 15-piece funk band. It's a fun way to transition from summer into the school year, where I tend to play more traditional classical music.

a cool concert venue...this is the view
from back behind the stage on a little hill


Speaking of that transition, I'm blown away by how fast summer went by! It's a cliche and I know I feel like this every year, but it really seems worse this year. It's probably because I had been expecting the summer to be easier on me than the school year but it turned up to be a toss-up - about the same or maybe a bit worse! Looking at my blog posting history, it would seem that summer wins the busyness contest, since I posted significantly less often.

I'm a little bit concerned because my fall schedule is going to be pretty intense and I'm afraid I'm not quite prepared for it healthwise. I need some more downtime to actually rest and recover, but I'm not going to get it. But for tonight I'm just going to have fun playing some great tunes on my horn on a beautiful summer evening.

Friday, July 20, 2012

Book Review: This is How


I am a big of Augusten Burroughs. I am also a big fan of self-help books, though I probably shouldn't have publicly admitted that. (It's mostly in the same way I really love reading organization blogs. They make me happy and excited while I envision a magical, oh-so-possible world, but my organization skills have yet to move one iota in the right direction. Same with imagining the more effective-productive-happy-assertive-etc self I could so easily become as I read the self help books. I feel happy and excited as I read, but I remain pretty much the same old self.) 

(I'm pretty sure the previous parenthetical rant made me look a little worse, rather than the better I was going for.)

Anyway, Augusten (I've apparently decided that we are on a first-name basis!) has written a whopper of a self-help book. Using his usual witty style, he gives concise and very direct advice to people in all kinds of situations from the very pragmatic (getting a job, losing weight, riding in an elevator, etc.) to the very traumatic (eating disorders, addiction, suicide, grief, etc.) to the deep-metaphysical-profound. He may not appear to be "qualified" to give this kind of advice, but overall I think this is some of the best advice out there for a lot of these issues. Plus, there are moments of comic relief!

The reason for my discussing this book on this MS blog is that one of the chapters is called How to Be Sick, and it's pretty good. The major theme of the chapter is VERY applicable for people with MS and for people with loved ones with MS - worrying about what might come next is always worse than whatever is happening in the present moment.
"Once you're in it, it's okay."
Sure "it" can be pretty awful, but "it" is never as bad as the imagining-it-in-advance part is. So, Augusten suggests adopting a "Pay as You Go" model. "What affects you now is what you deal with now." Don't pay now for what you're going to have to pay for in the future, or what you might never have to pay at all.

"Your disease will inform of what to worry about, when."

I also enjoy his pointing out of the importance of naps and snacks:
"Knowledge is important but naps are more important. The details of treatment are often confusing. Cheese is easy to understand. Eat cheese."
There is actually quite a bit of good meat to this chapter, and I recommend reading it. And the rest of the book. Especially if you are like me and enjoy both Augusten (or other searingly witty autobiographical essayists) and self-help tomes.



Wednesday, July 18, 2012

Wordless Wednesday: Jealousy

my sister is currently visiting CO without me
and keeps sending me pictures like this to rub it in

Monday, July 16, 2012

Gallop

I just watched the beautiful short film, Gallop. In addition to the very nice cinematography/artistry of the film and its sweet story, I thought it did a great job of capturing the myriad feelings of the early days of MS. This is especially impressive because it did this mostly without words. Anyway, join me and enjoy this film:


The film is a creation of the social network shift.ms and was funded by Novartis. I just explored the shift.ms site a bit and it looks interesting. I feel like I already have too much social media stuff on my plate, so I hesitate to join another. Anyone a member and have thoughts?

[p.s. note for T - WHITE HORSE!!]

Sunday, July 15, 2012

Chronic Pain is a Chronic Pain

Good luck trying to talk to me today. It will be like talking to someone waking from a deep sleep wherein the dream was a bad one, as described in the following quote:

The pain was always there, pulling me inside of myself, demanding to be felt. It always felt like I was waking up from the pain when something in the world outside of me suddenly required my comment or attention.
from The Fault in Our Stars by John Green 

It is hard to say what is worse about chronic pain, the chronic part or the pain part.

P.S. Sorry for the long absence. Times have been busy (mostly in good, fun ways) and thus I am now completely and totally exhausted because I borrowed heavily on future spoons. Hopefully, I'll post a bit more regularly again soon

Thursday, June 7, 2012

Guess What? I Look Good!

Over the past few days, I've been seeing people I haven't seen in about 5 years. People who knew me at the start of this MS journey and who knew about the MS. Well, during the obligatory catching up, they've all remarked on how good I look or that I'm looking well.

Of course, they all mean well, and I guess it's technically a compliment. But the phrase sure rubs me the wrong way sometimes. The implication is that they don't expect me to look quite so healthy. And then there's the fact that they can't see the majority of my symptoms, and that list tells a different story!

It's really great to see these folks, though, and their care and concern always means a lot to me. So I'm just going to pretend that I really just look good enough to constantly warrant comment. And I'm going to celebrate it!


Thursday, May 31, 2012

Review: Lorenzo's Oil

I just watched Lorenzo's Oil on Netflix. If you haven't seen it, you definitely should! The film is the true story of a family whose son gets ALD, a rare, devastating disease that affects young boys, progressively destructive in every possible way and leading to death. The parents refuse to accept the directions of the medical community (basically that nothing can be done) and insist on learning everything possible about the disease themselves until they ultimately discover and invent a treatment that has been miraculous for many sufferers of the disease.


WATCH THIS MOVIE!!

Reasons MS-ers Should Watch Lorenzo's Oil:



1. It's really good. Fabulous acting. Nick Nolte and Susan Sarandon are great. One scene in particular where Nolte's character sobs in utter anguish and despair in a stairwell is heart-wrenchingly powerful. 

2. ALD destroys Myelin, so this story is of interest to all of us with demyelinating diseases.

3. After discovering/developing/inventing the treatment, the next goal for the family was to find a way to reverse myelin damage, a goal that should be of MAJOR interest to all of us with such damage. The Myelin Project funds significant research in this area, so if you're looking for an organization to support, this would be a good one! The dream of repairing the damage that has been done is a huge one for me, as the chronic pain I live with would not at all be missed and there are so many people out there with disabilities far beyond mine that I so wish could be reversed.

4. The film contains some HUGE lessons on being an empowered patient (and/or empowered parent, caregiver, friend, etc.) on how to respond to illness, how to interact with your disease community, and how to interact with the medical/scientific community. The part of me who as a junior-high through high school age kid that was planning to be a doctor and who loves and is good at science is somewhat inspired to dive into research and find my own cure. (But then the part of me that is always fatigued and that likes the stuff I spend my time on now says, how exactly do you plan to fit the years of studying and intense thought into your life? And then we argue until we forget what we were arguing about.)

So watch this film, check out The Myelin Project and support them if you can, and be an empowered patient!

Saturday, May 26, 2012

Good Vibrations

Headline from the awesome Lifehacker blog this week: "Phantom Cellphone Vibration is a  Sign You Need a Tech Break." This is when you feel your cell phone vibrating in your pocket, but when you check it you realize there was no vibration - or even worse, your cell phone isn't even in your pocket! So-called Phantom Cellphone Vibration is not a sign of psychosis, but rather an addiction to technology. The cure - take a break!

Tech Addiction or Something More Sinister??

Or - speaking from experience - I suggest it could also be a sign you have MS. During my early days of violently ignoring a range of symptoms from total limb numbness to constantly having to pee to an insanely itchy itch that could not be scratched to jittery, bouncy, jackhammer legs to falling down, I often felt this so-called Phantom Cellphone Vibration. I assumed I was going crazy. I was eventually diagnosed with MS, which explained most of the symptoms. But I still assumed the Cellphone Vibration phenomenon was a sign of being nutso and/or hyper-aware of the idea of receiving calls. When a few months down the line, I finally saw an MS-specialist neuro as opposed to a garden variety neuro I was stunned, startled, and amazed to discover that this was just another quirky MS trick. The neuro showed me that I had failed to realize the connection between head movement and this vibration experience. No phone calls for me - just Lhermitte's sign!

Monday, May 21, 2012

Magazine Monday: Ann Romney

I try to tune out much of the political scene, beyond researching the issues that are important to me and knowing generally where relevant candidates stand. I find politics and the associated media circus to be an energy sucker. I hate all the negativity and general ridiculousness. Beyond reading headlines, I'm pretty out of the loop when it comes to the current presidential campaign situation. So I was pretty surprised to learn that Ann Romney has a MS, a fact I discovered in the brief profile on her in a list of fierce women in MORE magazine. (Which is an awesome magazine! It's for the "mature woman" which is a bit beyond my demographic, but I find it to have much more substance and relevance than most other women's magazines.)


from May 2012 MORE mag: profiles of fierce women

Anyway, Ann has MS and I suddenly find her more interesting. Will I follow her husband's campaign more closely? Probably not. But if any of the headlines I browse reference Ann and/or Mitt + MS or healthcare in general, I might just click on and read. Here is a brief news clip of Ann discussing how MS and fatigue have affected her on the long, tiring days of the campaign trail:


Thursday, May 17, 2012

On Motivation

Lately I've been struggling to feel motivated to start or finish various projects that need my attention. Maybe you've been feeling the same way? Check this out for some you-can-do-it power:




Now, if even that doesn't help, you should probably just give in to the feeling, take the suggestion of my amazing niece Kylie, and just grab a coloring book and crayons:

video
Kylie's hit new spur-of-the-moment composition "Color the Day Away"

Sunday, April 29, 2012

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.

Tuesday, April 17, 2012

The Hard Way

Today's HAWMC prompt: Write about a lesson you learned the hard way.

The lesson I learned: Walking is awesome. The carefully coordinated choreography of muscles, tendons, bones, joints. Like magic, step after step, no thought or effort required. It's a joyful, beautiful, soulful act.


As a baby/toddler, the transition to walking was a scary one for me. I just couldn't quite trust it, so I would only walk while pushing around my little green and yellow shopping cart. Eventually, though, I left the cart behind and found my stride. Walking...even running....full speed ahead! It was no longer an issue - just a tool that was there, ready to be called upon at any moment. And a humble tool, never making an issue over the miracle that it was.

So for 24 years, I walked, completely unaware of the awesomeness contained in every step. But then MS stepped in and taught me the lesson the hard way. 

So, now I know. Walking is awesome. I'm lucky in that the gift - the miracle, the magic - that is walking was returned to me after an on-again-off-again year of major walking challenges. Now, most days, I can walk without conscious thought or effort. But I have learned my lesson, and I now acknowledge and treasure my steps through the world.

My dear friends, walking is awesome. If you are able to walk, please join me in celebrating this lesson. As you walk through your life today, please take a moment to really think through the magic that every step is. Pause to acknowledge the blessing it is to be able to walk without having to think through every part of the movement, without straining with effort to move your body from place to place. To think only of wanting to go from here to there and your body following through - it's delicious, isn't it? Try not to take it for granted.

I also recommend reading Kate Wolfe-Jenson's wonderful poem, The Magic of Motion. It captures this "lesson" perfectly.

Friday, April 13, 2012

HAWMC 2012: My Ten Things!

10 Things I Couldn't Live Without
in no particular order

coffee

chocolate

vegetables

books

music

nature

the internet

art & beauty...in everything from paintings to poems to movies to human kindness

free time

HOPE



Tuesday, April 10, 2012

HAWMC 2012: Dear Me-at-16

Dear Kayla,

I could tell you so many things about the next 15 years of your life. I could tell you about wonderful things, horrible things, mundane things. I could tell you what to do with your life based on what I know. I could prevent you from making certain decisions you will come to regret. I could suggest alternate paths to take based on things that will happen to you.


And part of me really wants to tell you all of these these things. Part of me wishes desperately that I could influence your choices, that I could guide your decisions. But, I know you - I am you. I know that much of this information would leave you feeling paralyzed. It would heighten your anxiety rather than lessen it. And how do I know that any of these changes would ultimately make things better, easier, happier?


So, I will tell you only this: there are bad things in your future, just like everyone. But there are so many truly wonderful things - people you will meet, places you will visit, experiences you will have. Much laughter, much delicious food consumed, wonderful memories made with family and friends. You have so much to look forward to. As for those bad things, I want you to know that you have the strength and the courage to handle anything that comes your way. You'll find ways to make the best of your lot, ways to find the hidden blessings. You'll power on. You'll even inspire others.


With much love,
your future self

This post inspired by HAWMC prompt of the day:
Write a letter to yourself at age 16.

Monday, April 9, 2012

HAWMC 2012: But You Look So Good!



I don't know about you, but MS has apparently done wonders for my looks. I am CONSTANTLY getting told how good I look! Now I can worry even less about my appearance and just keep calm and head out into the world with the confidence of a supermodel, knowing that I am going to look "so good" no matter how much effort I put into it.

This post brought to you by today's HAWMC prompt:
Make your own Keep Calm and Carry On poster related to your health condition.

Sunday, April 8, 2012

HAWMC 2012: Good Conversation

Happy Easter! I spent the day feeling quite under the weather, having some sort of cold/flu/ear-infection treat, but I still managed to have a lovely time with my family. I ate lots of good food, did some of my best sidewalk chalk art to date (not saying all that much), and had some good laughs. I also spent half the day arguing with my family over whether or not I should go to the ER, the only option on a holiday when the regular clinics and urgent care and walk-in type places are closed. I won (because the ER is for emergencies only, duh!), but I will concede with a trip to visit a doc tomorrow morning.

A snippet of conversation from my day:

Scene: me in a comfy chair, super-awesome-almost-6-princess-niece Kylie curled up on my lap. 
Kylie: Did you get the text my mommy sent you the other day about what I said to her? 
Me: Yes! (giggle) 
Her: (giggle giggle giggle) The one about the butts?? 
Me: Yes! 
Her: Because I saw you had a picture put onto mommy's computer screen of some butts!! (giggle giggle) And so I said to her, "Kayla owns butts?!?!" And then I told her to text to you that I said that! (gleeful shriek, giggle giggle) 
Me: (giggle giggle) Well, the only butt I OWN is this one (points to rear) but I did put a picture on my blog that showed some girls' butts the other day! 
[conversation dissolves into fit of giggling and tickling and whispers of "you-said-BUTT!" and my sighs of utter contentment and joy]

This post brought to you by today's HAWMC prompt: 
Recap an awesome conversation you had this week.

Thursday, April 5, 2012

HAWMC 2012 Day 5: Ekphrasis!

Today's HAWMC prompt is to go to flickr.com/explore and to write about whatever random image shows up. I love the idea of this post and the concept of ekphrasis in general. Writing about art is interesting because we all have very different responses to visual art. My random picture:

hollister by debrah leonard
Hollister by Debrah Leonard

Hmmm. My first reaction was to be less than thrilled. I had lots of thoughts and directions to go in with last year's picture for the ekprhasis post. But this year, I have trouble relating to or connecting with this picture. Young girls in short shorts having a good time of some kind. Sure, I've had lots of fun times with friends and I occasionally wear (longer) shorts, but this image does not at all connect with me, so it might be a bit of a stretch to connect this to my health.

This makes me think of something my neurologist said to me once: "You can't be like a normal 25 year old. Your peers are building careers and going out and having all kinds of fun every night. You can't sustain that kind of lifestyle." I'm paraphrasing, of course, but that statement really struck me. Not that being "normal" is important to me, but it kind of sucks to not be able to be normal. I have to constantly be assessing and conserving my energy levels and responding appropriately to fatigue. I have to get a lot of sleep. I only have so much time in a day in which I am truly cognitively with it, so I have to choose how to use that time carefully. I can't work a regular, full-time, typical hours job. (Not that I'd necessarily want to, anyway!) If I do go out for a late night of fun with friends, I pay for it for days. I am "borrowing spoons" from the future when I do "normal" things like this, and it makes it very hard. Being normal is definitely overrated in my opinion, but it still stinks that I don't have the option to be normal, that I don't have the option to be like my peers.

Wednesday, April 4, 2012

HAWMC 2012 Day 4: I Write About My Health Because...

I just reread the post I wrote last year for today's prompt, and that pretty much says it all. (Plus, it's late and I don't have the energy to say anything worth reading at the moment!) Check it out:

I write about my health because...


Tuesday, April 3, 2012

HAWMC 2012 Challenge Day 3: Superpower!

Today's writing prompt: If you had a superpower – what would it be? How would you use it?

Hmmm, let me think.

I WOULD BE ABLE TO CURE DISEASE WITH A SNAP OF MY FINGERS!!

SNAP! You're welcome. Enjoy your good health.

Monday, April 2, 2012

HAWMC 2012 Day 2: a quote that shouldn't be quoted

Today's HAWMC prompt is to write about a quote that inspires you either positively or negatively. I have tons and tons of quotes that inspire me positively, but I choose today to explore a quote that had a negative effect on me. Perhaps fortunately, I can't find the exact quote that I find to be so upsetting despite my best Google efforts.

I was in graduate school when I got the MS diagnosis. I was experiencing many physical problems and I was very open with my peers and colleagues and teachers as I went through this crazy new set of experiences. I am extremely grateful for the way everyone in the department responded and for the genuine care and concern they showed me. One teacher, in particular, really touched me with the concern he showed, probably because he was a generally stern and stoic character and I wouldn't have expected such tenderness. This teacher sometimes forwarded me things he had heard about or read that somehow related to health issues in general or MS in particular, a gesture I appreciated. One article, though, left a deep scar.

The article was about complementary and alternative treatments for various autoimmune diseases. I am very much in favor of holistic care, and so the premise of this article didn't upset me at all. What upset me was when at a certain point in the article it described the "MS personality" and discussed how these personality traits essentially caused the disease. I could have brushed this off as absurd - and part of me certainly did - but unfortunately the description seemed to describe me perfectly. Again, I don't have the exact text, but to paraphrase, the main points were being quiet/shy/introverted and being someone who suppresses their emotions and opinions. This certainly doesn't describe in full and doesn't describe me in every single context and at all times, but it does very much describe me.

The rational, logical me could instantly recognize the ridiculousness of this argument. But a part of me felt those words like a dagger, felt this was the truth. I brought this all upon myself. There was something inherently wrong with me, so wrong that my body was self-destructing!

Now, I hold no malice towards the man who forwarded me this article, as he may not have even read it in detail, and ultimately had good intentions. But I do wish the author of the article and others who espouse this kind of nonsense would realize the cruelty of their words.

I believe that your personality didn't cause your disease. And I usually believe that my personality didn't cause mine. But that quote still haunts me. And its scar is just as real as those that show up on the MRI scans. Words are powerful.


Sunday, April 1, 2012

HAWMC 2012 Challenge Day 1: Time Capsule

Greetings from the year 2012! Life as you know it today was very different one hundred years ago. As you examine history, you probably shake your head with wonder at how simple our lives were and how limited our technology seems. That's how we feel when we look back one hundred years from today, and with the rapid rate of technological advances we are seeing currently, I can't even imagine how far you've gone by 2112!

One area that you might find particularly astonishing is related to health and disease. In 2012, disease was a very serious reality for many of us. One such disease, multiple sclerosis or MS, was quite the beast. It tended to strike people in the prime of life and could present with a range of devastating symptoms. The disease ravaged the brain and spinal cord of its victims and tended to get worse over time. Patients had a few lines of defense - self-injected shots or monthly infusions or pills - that slowed down the disease's wrath, but there was no cure. 

As a patient of this awful malady, I write to you in the future with perfect confidence that MS is no longer something you must suffer with. There is certainly a cure, perhaps even a preventative vaccine.

You might be interested to know that in my day, we took part in annual walks and bike rides to raise money to fight MS. We wore orange. We wrote blogs and books, sharing our stories and raising awareness. And we hoped. With every new lesion found on our MRI scans, with every injection, every doctor's appointment, each fundraising event, every new symptom, each and every moment living with this cruel disease, we hoped. We believed.

You surely have many problems in 2112, but MS is not one of them. Our children, grandchildren, and nieces and nephews among you will not have to wear orange for any reason other than a fashion choice. And for that, we rejoice.

This post inspired by the 2012 HAWMC prompt of the day: 
Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. 

Wednesday, March 28, 2012

Wordless Wednesday: Trying Salmon!

asian glazed salmon at ruby tuesday

my first ever taste of salmon!
(part of my try 30 new foods effort for my 30x30 list)

Monday, March 26, 2012

Magazine Monday: interesting ad campaign

I nearly passed by this ad in the March issue of Shape magazine, assuming it was related to fashion or something I don't particularly care about, but in the middle of turning the page I read the tagline and stopped for a closer look.

Live with boldness. It's time to rethink multiple sclerosis. fearlessms.org
Interesting ad campaign, eh? I examined the website, and it appears to be an offshoot organization of the Multiple Sclerosis Foundation. The Fearless MS site is pretty basic, consisting of a concise description of the disease, an open letter from MSer Laura Mann about her experiences with MS, and some calls to action for donation including the suggestion that brides and groom request donations to the MSF in lieu of wedding gifts. Of note, the model in the ad photo, Shannon Rusbuldt, heads the charity event Fashion's Fight Against MS.

I just checked out the Fearless MS facebook page, and I see that there is a second ad just coming out in some other magazines, this one featuring a bride:


Overall, I think this is a great move by the MSF - getting great visibility in the high profile publications they're working with and using a punchy, hip, youthful vibe to grab attention and hopefully dollars for the cause.

Live with boldness! I'm trying.

Monday, March 12, 2012

The Tickle of Doom?

So, there's this tickle-like feeling on my back.

Just a light, fluttery, tickly feeling on a very specific piece of lumbar real estate. In a certain context, this feeling could be downright pleasant. In this one, it is anything but. It's not just that it's in a place that is hard to reach. It's not even that easy access for a scratch or rub wouldn't make a speck of difference. And it's not that it's the middle of the night when I should be sleeping and the sensory distraction isn't exactly welcome.

So, what makes this tickle so very upsetting to me at this moment? Because it is a tickle I know well. The exact same feeling, in the exact same location. The same light fluttery feeling at least a few times a minute that I felt quite often during Year One of MS (aka the awful-horrible-how-did-i-ever-finish-my-masters-degree-while-battling-relapse-after-relapse-and-just-dealing-with-the-scary-terrible-diagnosis year). The same feeling, in fact, that I usually would feel as a warning symptom, before the deluge of more-debilitating symptoms made their presence known. So, you see, a tickle is not just a tickle. It's not just one of the dozens of annoying little sensory issues I deal with in relation to MS. It's that its the symptom that I seem to deeply associate with that scary what-is-coming-next feeling.

After Year One of MS and its eight or so delightful relapses, after starting Tysabri and being relapse-free for 4-ish years, I did very occasionally feel the tickle. And its warning cry brought no following deluge, so my rational mind should be able to accept that this is not necessarily an If-Then kind of situation. And, I do, mostly. But this sensory misfire always takes me back to that scary, dark frame of mind. It always reminds me that there is scarring in my brain and spinal cord. It always reminds me that, warning cry or not, something could be coming next. Lots of things could be coming next. And next could be never, or soon, or later, or now.

Talk about the tickle monster.

Friday, March 2, 2012

5 Things Friday: On My Mind



5 things on my mind on this Friday afternoon:


1. I was recently tested for the JC virus again, at the 6th month point. Still negative, baby! So I'll be happily sticking with Tysabri for now. This gives me a lot of peace of mind, despite the concern that I could unknowingly contract JC at any time. I'll continue getting it checked every 6 months.

2. I'm an introvert, so I enjoyed the following video a few minutes ago. Some of my favorite quotes: "Solitude matters!" "Stop the madness for constant groupwork!" "The world needs you and it needs the things you carry."

 

3. I need to get my 30x30 list completely finalized and up on this blog, or maybe a 2nd linked blog. I have most of the list complete, and I've started crossing items off the list, especially on the trying 30 new foods list.

4. I am sooooooo behind on reading MS blogs, but I hope to find some time to catch up with you all soon!

5. It was my birthday last week, and I still have a few free meal/treat/drink coupons to use before they expire in the next day or two. Tonight, I'm thinking it's time to return to Noodles & Company after a long hiatus. I ate there right after getting the MS diagnosis 5-ish years ago, and that negative feeling has been connected with the place ever since. But it's time to move on. So bring on my free Indonesian Peanut Saute! Yum!



Thursday, March 1, 2012

Thankful Thursday: not falling

Today, I am thankful that I haven't fallen on the ice at all this winter. It has overall been a much milder winter here in the tundra than normal, but we have had many days of treacherous travel over icy sidewalks, including today. Some years past I have fallen several times, but so far this year I am definitely winning the ice battle, mostly due to slow and cautious steps, and sometimes holding on to someone for support.

The only time so far I fell this year, I was on dry, flat land. While this very much bummed me out and reminded of many falls in past days of MS troubles, today I happily express gratitude for no icy falls!

In honor of this subject, here are a few photos taken on my recent California vacation that my friends and I found rather amusing:




If you have fallen recently due to ice or MS or any other reason, I hope you are okay and that perhaps you can find some humor in the situation by imagining your own personal stick figure image of a caution sign! Wishing you all a fall-free Friday tomorrow!