Saturday, December 31, 2011

The Obligatory Year-in-Review Post: 2011

I am rather fond of this type of post, though there can be something overwhelming about their abundance at this time of year. I also like reading various lists of resolutions, a subject particularly interesting to me this year as I work on developing my 30x30 list.

Like all years I suppose, this one had a mix of good and bad. My health was overall very stable, though I continued the daily battle with my particular challenges. I secured and happily worked the first year of what is essentially my dream job, though that too is not without its challenges. I had lots of good times with family and friends, though also often felt somewhat lonely and isolated. I experienced great joys and great sorrows. Overall 2011 was a decent year, but I am very much looking forward to 2012!

Looking back at my 2011 Resolutions, I did an okay job. I think that overall I have become much better at ignoring my quest for perfection and just doing things the best I can rather than not even attempting due to fearing my inability to achieve perfection. There are areas where this still plagues me, to be sure, but I know that I have made progress. As for the health goals, I guess I've made some progress there as well. In particular, I have become more involved in the MS community with 59 blog posts this year, participating in the HAWMC, and commenting on many more MS blogs. Thanks for having me in this vibrant virtual club, all!

I'm not going to list any particular resolutions for the year here, as my primary focus is on finishing writing and then carrying out my 30x30 list. This project makes me feel energized and excited, but I know that my more ambitious items might feel overwhelming at times. A primary reason for this list is the idea of developing my follow-through skills, a topic I know I will write about in much more detail in the future.


a Glorious Sunset on Christmas Day, 2011
 Best wishes to all for the healthiest, happiest possible you in 2012!

Friday, December 23, 2011

Catching Up & Christmas Wishes

Yikes, I haven't posted in a while again. The last month has pretty much been the busiest ever, at least in my post-MS life. It has been a good month overall, but rather exhausting. I've been trying to rest up the past 2 days because the next several will be filled with festive family fun. I've been adding to my list of topics I want to write about here, though, when I do have time and energy.

One thing I will be writing about a lot more soon but that I want to mention here is a list I'm writing. I will turn 30 in one-year-and-2ish-months and I'm making a 30x30 list - 30 things I want to accomplish by the time I'm 30. I'm trying to do some things I always talk about or think about doing but never do and I also want to push myself outside my comfort zone and do things that are scary. That said, I want this list to be a source of personal growth and enjoyment rather than a stressful obstacle. I have several items that are going on for sure already (try 30 new foods, go ziplining, learn to sing and play this song on ukelele, do 30 hours of volunteer work, get a massage, take my mom on a trip out of the US) but I am trying to get input as I work on finishing the list. For readers of this blog in particular:  I want at least one item to be MS-related, specifically to be some kind of MS fundraising goal. I haven't done any of the walks or other events, so I will probably do one of those, but I would like to create some specific fundraising goals and I'm not sure how to go about this. Tips? I would also love any other suggestions for the list from an MS-informed audience. I'm looking for things that will be fun, easy, scary, hard, good-for-me, rewarding, meaningful, etc. I need some items that will be easy to cross off as I'm already collecting quite a few that have me wondering how I'm going to get it all done in just a little over a year!! Thanks in advance for your suggestions!

I will leave you with my most sincere wishes for a wonderful Christmas and a joyful holiday season. May you have the best health you can, get enough rest and enjoy time with loved ones!

Tuesday, November 15, 2011

Uncertainty and the Fragility of Life

A very good friend of my younger sister passed away this morning. She was 24, a preschool teacher, full of life. Pneumonia, complications, death. So sudden and unexpected and unthinkable. I did not know her well, but news of her passing put me into a deeply pensive mood today.

I've been lucky in that I've not lost anyone close to me, other than a dear Grandmother when I was in junior high. Today, I've shed several tears just imagining how those close to this girl must feel today - her friends, colleagues, and especially her family.  Such anguish. I can't imagine how I would feel if I lost a close friend or family member. Devastating. I know it has been a very hard day for my sister, and I grieve for her and the pain this loss brings with it.

A loss like this - sudden, unexpected, someone so young - really reminds me how very fragile life is and how much is uncertain about our days. Especially early on, I spent much time worrying about the uncertainty factor in relation to MS. It is still certainly something I worry about, simmering away on one of the back burners in my mind. But just because we have a diagnosis that absolutely means uncertainty, how is that any different from the human condition itself?? None of us can ever know what tomorrow holds, or even from hour to hour, minute to minute. My sister's friend worked on Friday, had to go to the ER on Saturday, was rushed by ambulance to another hospital on Sunday and died Monday morning. Who could have anticipated such a tragedy?

From this deep well of sadness, though, comes the beautiful reminder to appreciate the present, to live every moment like your last, to leave every interaction with every person as though it's the last time you will see them, and to be grateful for all that you have, especially for all the people you love. Make sure they know how you feel.


May you stop dreading uncertainty, and truly accept that all is uncertain and that's okay. May you shift the energy of dread and worry to searching for and reveling in the beauty that is all around us - the people, nature, the arts, physical stuff, life. Hold that beauty like the fragile gift that it is and treat it with the greatest of care.

Sunday, November 13, 2011

Book Review: The Power of Music



If you're into music, you should read this book for sure! But this is an MS/pain/health blog, so I won't ramble on and on about the cool stuff in this book that might not excite everyone as much as me. The book doesn't have a major or direct relation to MS, but it does talk about music as a therapeutic tool and has some relevant and interesting points that I wanted to share.

One is just the reminder of music as an agent of healing and the suggestion that we can and should use music to harness the possibilities of neuroplasticity. I know I need to harness the power of music more often...to distract, to change mood, to energize, to relax, and so on. I think music therapy is a very powerful type of CAM that should be more a part of everyone's treatment (and life) plan.

There was also mention of the relatively new field of physchoacoustics and its use in helping relieve pain. Dr. Concetta Tomaino of the Institute for Music and Neurologic Function at Beth Abraham Medical Center in NYC did a pilot study on phsychoacoustics and MS patients with spasticity that had impressive results in reducing the amount and frequency of spasticity. An intriguing field and definitely to keep an eye (or ear?) on.

What are your favorite musical ways to affect how you feel? Do you have a song that energizes or relaxes you when you hear it?

Thursday, October 13, 2011

Thankful Thursday: I love my job!

I am so grateful for my job! I really love it - teaching and making music with people I like, and with a schedule that works with my heath and fatigue needs. It fills my soul with joy. It is essentially my dream job, a job I was certain MS had taken away from me. I had to give up the serious path in pursuit of this career and moved back home, where I did a bit of playing and teaching here and there, but also did various other things for work, as well as exploring new fields through online classes. And I just spent a few years figuring out how to deal with living with a chronic illness and its BFF, chronic pain. Then suddenly, out of nowhere, I got a call to see if I was interested in this job. So if I hadn't gotten MS, I probably still wouldn't have the job I wanted, but because I got sick and moved home, this opportunity came up. It's really perfect. So thanks, you dumb disease! No, really. I am so very grateful. But you're still dumb, and so is your BFF.

Who knows where the road will lead next!

Friday, September 30, 2011

5 Things Friday: Favorite Blogs & Health Updates

It's that time again!

5 Health Thoughts/Updates:
1. Even though my MS is currently stable, I hate this feeling of being between MS neurologists, due to the retirement of my wonderful neurologist.
2. I tested negative for the JC virus recently.
3. I specified MS-neuro in #1 because I did just add a pain specialist neuro to my roster of docs on Team Kayla's Health, and so far I like him!
4. In direct connection to #3, I'm currently exploring some tweaks to my pain management routine, both pharmacological and otherwise. In the latter category is an upcoming appointment with a nerve pain PT specialist to discuss adjustments to my exercise routine that won't make the pain worse (meds cause weight gain, weight loss requires more exercise, exercise causes more pain, more pain causes more meds...and the cycle continues!) as well as other approaches to pain management, like TENS socks. In the former category is (hopefully, depending on the whims of the horrible, evil, no-good bean-counting turds insurance gods) intravenous Lidocaine and Lidoderm patches.
5. Remember way back when when I discussed my work on improving my general health care? Well, I haven't exactly followed through on that as well as I should have. Time to make some appointments!

5 Blogs Unrelated to Health Issues I Read Regularly That Probably Will Tell You a Lot About Me:
1. Bookshelf Porn: pictures of bookshelves filled with books. It sometimes almost makes me salivate.
2. lifehacker: sometimes a little nerdy, but full of tips and tricks on productivity, technology and more, running the gamut from clever to crazy.
3. thx thx thx: a handwritten thank-you note every day, written to people, inanimate objects, experiences, ideas and all kinds of other things. Often funny. Often inspires thoughtful consideration of things you don't always consider with gratitude.
4. Horn Matters: strangely enough the reason I discovered MS blogs at all (via the discovery of Lisa's Brass & Ivory through the story of her "metal taco" experience). So ultimately, you have Bruce and John to blame for the very existence of the MS muse! I am a horn dork above and beyond any of my other descriptors (except perhaps reader/book dork), so this blog is like candy for me.
5. Mojo Savings: I like a good deal. And free stuff. This blog is a plentiful source of both.

Happy Friday to all!

Monday, September 26, 2011

Magazine Monday: Playing the Result


The above picture is a shot of the Letter to the Editor page in a recent issue of  Good Housekeepingmagazine. A previous issue had included an interview with Michael J. Fox and the writer of this letter talks about being diagnosed with MS and adopting Fox's motto of "Don't play the result."

I'm a big fan of Fox and would recommend his memoirs (such as Always Looking Up: The Adventures of an Incurable Optimist) to anyone, but perhaps especially to people dealing with chronic illness. Anyway, I LOVE this idea of not playing the result. So you have MS and might one day be in scary place X, but that doesn't mean that you should plan to immediately take up residence there mentally and emotionally. Fox has Parkinson's, but he doesn't play that role in his life - he continues to play roles of husband, father, actor, advocate. I know I'm sometimes guilty of playing the result, so I'm glad Linda McEwen took the time to write this letter to GH that happened to jump out at me and make me reflect on those wise words. Don't play the result!


Incidentally, this same issue featured an interview with Meredith Vieira in which she talked some about her husband Richard's health, including the ways she thinks it has improved her children as people to have a dad with MS and other health problems. I'm also big fans of Meredith and Richard, and I'm pretty sure they don't play the result either. How about you?

Sunday, September 18, 2011

Book Review: Flourish


I recently read Martin Seligman's Flourish. Dr. Seligman is one of the pioneers of Positive Psychology, a discipline that focuses on positive emotions and how to experience more of them. It's not about just putting on a fake smile and forcing yourself to think happy thoughts. Rather, it's a science-based approach to well being. I've read some previous work of Seligman, and the overall subject matter is something I'm very interested in.

This book expands upon previous work in creating what he terms authentic happiness. This book introduces a new theory of well being called PERMA, wherein P stands for positive emotions, E stands for engagement, R stands for positive relationships, M stands for meaning, and A stands for accomplishment. A PERMA-filled life is one not just of happiness, but of flourishing. I love the word flourish, and I think its a great thing to aspire towards.

I got lots of little things out of this book. I love reading about scientific research, and this book has a lot of it described in very accessible ways. (This is not a fluffy, frou-frou self help book. It's very much based in empirical scientific study.) There is also a lot of practical real-life application that left me feeling energized and optimistic.

I'll just mention a few little things I got from the book. First, the idea of "satisficers" as opposed to "maximizers." Satisficers are things that are "good enough" wheras as maximizers are things that are "perfect." For happiness and flourishing, generally satisficing is encouraged over maximizing. This was a big DING DING DING! moment for me. I've talked a bit about my perfectionist ways before, but let's just say that I often have a need for maximizing, even when - sometimes maybe even especially when - true maximizing is impossible, or at least causes significant negative side effects! I've been working on it, but I have a lot more work to do. Satisificing is the end of the world and will ruin everything!!! Satisificing is fine. Satisficing is okay. Satisficing is better. Satisficing is happier.

And a quote:
“Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” – preamble to constitution of the WHO, 1946
Another ding ding ding! moment. I so often focus on the presence of problems in my health, when there is very little I can do to change those things. I should be focusing on everything else, and what I can do to make that better, which will improve the overall state of health and happiness.

Check out authentichappiness.org for more information on authentic happiness, PERMA, and Positive Psychology. The site has tons of questionnaires and surveys and tests that measure things like your strengths, your GRIT, your optimism, your forgiveness and many more, if you're in to that kind of thing.

Tuesday, September 13, 2011

JC Virus test results!

I'm way behind on blogging! I had my 6-month neuro appointment about a month ago. Not much change MS wise, but there was a major piece of news: my beloved neuro is retiring and this was our last appointment! I'm super bummed, because I haven't had a great track record with good doctor relationships and this neuro was pretty perfect. I will definitely miss him. As for the new neuro...a replacement is coming soon-ish, but I don't know anything about him yet. I could also try the MS center in town (I currently travel to an MS center 4 hours away), but I'm somewhat hesitant to do so for various reasons.

I had blood drawn to participate in the JC virus study, and just got the results back yesterday: NEGATIVE!! Although the study strongly emphasizes that the results don't officially mean anything and that my blood is just helping the overall goal of trying to determine the relationship between JC and PML or something to that effect, my neuro led me to believe that a negative result is a very good thing. He said that a positive result would mean my PML risk was closer to 1 in 300 and a negative result would mean my risk is essentially nothing, with the caveat that I could contract the JC virus at any time. In sum, the negative result gives me (and my mother!) some peace of mind and I'm happily going to continue my Tysabri infusions for now.

Next week I'll be meeting with a pain specialist neuro. I'm not necessarily unhappy with my current pain management regimen, but I have several concerns, and I wouldn't mind being even happier.

Thursday, September 8, 2011

Thankful Thursday: new to me bloggers

In my most recent Thankful Thursday post (hmm, July 20. maybe it's a bit of a stretch to use the term recent.), I said that in my next ThTh post, I was going to highlight some of the bloggers I've only discovered relatively recently. The following bloggers are newer to me than others I have highlighted, but they definitely have the gratitude of this blogger!

I am grateful for Karen of Meandering...One moment please. Gorgeous photography and poetry, and a fellow believer in the power of Nature Therapy.

I am grateful for Nicole of My New Normals. Good, honest writing and great supportive interaction with other bloggers.

Thanks, bloggers!

One problem I have with MS blogs is that there are SO MANY out there. I have a solid list that I like and I've come to feel like I know them in some way. And just staying current with that list is tough! I try to check out new blogs from time to time, and sometimes find great ones to add to my list, like the ones listed above. But I have only so much time and energy that I'm able or willing to devote to the MS head space. Sometimes I feel almost guilty for not reading more blogs more often, but that kind of thought process isn't a good idea, so I just have to accept my limitations, I guess. How do you all deal with this, if you also find it an issue?

Monday, September 5, 2011

Falling Into a Bad Mood



I fell the other day.

Not that unusual of a statement for an MS patient, perhaps. And at a certain point in my MS story, this statement would fit right in. After all, it was a fall that finally got me to go in to the doctor. (Because one entire leg being very numb for a few months and assorted other symptoms probably were nothing to worry about, right?) And there were a few more falls in the year to come, and far more than a few almost-falls.

But since Tysabri, I've been fall-free. And almost-falls have only occurred on hiking paths or icy sidewalks. Sure, sometimes my balance is a little iffy and sometimes my feet feel a little numb, but my life has been a fall-free zone.

Yet, I fell. Walking in a straight line on a smooth, flat road. No clue why or how it happened. It was all too fast, and there I was on the ground with a scraped elbow, knee and hand.

That first big, bad fall that sent me into the doctor? The doctor suggested that I had probably just tripped over my own feet like she supposedly did all the time. Then, I knew that wasn't the case. I'm not exactly the kind of person who goes to a doctor unless I am positive that something is wrong, and probably something fairly serious at that.(An attitude only strengthened by this doctor's suggestion.) But this fall? I think I probably somehow tripped over my own feet in a purely random, freak accident, happens to everybody every now and again kind of way. Or maybe it was an MS thing, after all, as I was particularly tired and in pain after a long day.  Even if it was, though, this fall? This fall was not a big, bad terrible sign of something bad in the way that first fall was.

But this fall sent me fast and hard back into that negative emotional space. It sent me into mental flashes of my past struggles and of a future including more and more falls, more and more need for assistance, more and more disability. It made me sad, mad, and scared.

But, luckily, time with this disease has given me a few tools for dealing with this kind of head space, and I was able to pull myself up out of the funk before too along. Along the way up, I took some time to feel gratitude for all of the amazing things my body can still do well and for the fact that I found a treatment course that has given me over three years of no falls, other than those involving icy sidewalks. This little flash of memory and/or imagined future reminded me that what I've got now is pretty great. And now, of course, is all we really have, so that's where I'm going to try to stay.

Wednesday, August 31, 2011

Book Review: The Pain Chronicles by Melanie Thernstrom


I've been talking about pain quite a bit lately, probably because it is such a major part of my life. I recently read Melanie Thernstrom's The Pain Chronicles, a book I would recommend to anyone who deals with pain or knows someone who does. Thernstrom is a great writer and this is an engaging read. It is part memoir, about her personal experiences with chronic pain, and part research-based academic examination of the subject. There is a lot of information about what chronic pain is, from both scientific and emotional/spiritual points of view. There is also much information about pain treatments and the hows and why of whether or not they work.

Included is information about some disturbing studies about brain atrophy caused by chronic pain: "While normal aging causes gray matter to atrophy by half a percent a year, the gray matter of chronic pain patients atrophies dramatically faster: the pain patients showed losses amounting to between 5 and 11 percent, the equivalent of ten to twenty years of aging."  Um, yikes. Neuropathic pain has an even greater impact on the brain than other types of pain: "The loss in brain density seemed related to pain duration, with 1.3 cubic centimeters of gray matter being lost for every year of chronic pain." Like the author, I "couldn't bear to complete the calculation." Understanding the physical changes in the brain caused by chronic pain reveals the "secret of the chronic pain cycle, why it worsens over time without new nerve or tissue damage: pain causes changes in the brain that diminish the parts of the brain charged with modulating pain, which results in an increase in pain, which further atrophies the brain...and so forth." I think Thernstrom later referenced a more hopeful study suggesting that the decrease in gray matter is a matter of cell shrinkage rather than death, and that some regeneration may be possible if the pain is successfully treated, but I can't find where, so maybe I'm making it up in a desperate attempt to cling to something positive.

the doctor is in!
Beyond pharmaceuticals, some of the most effective means of dealing with pain seem to be in the manipulation of expectation, attention, or both. The expectation of pain causes pain to be worse, a serious issue for those with chronic pain: of course you expect to be in pain when it is a continual presence in your life! But I'm going to work on expecting to feel better, in as much as that is possible. Issues of placebo come into play here. Belief in a treatment can do a lot for how the brain's pain modulating system works. As far as manipulating attention, distraction has long been one of my best tools. When the pain is really bad, I turn to passive attention grabbers like watching tv shows on hulu or listening to music. My favorite form of distraction by far is my niece. Hanging out with her, even just watching her play is the best form of medicine I know. Being out in nature and focusing on the natural beauty all around us is also great distraction.

some great OTC pain relief!
Here is a great quote by pain specialist Dr. John Keltner about the importance of finding experiences what can command your brain's attention in the way that pain does:
"Pain is such a persistent, relentless experience, it actually poisons and infects your brain. Pleasure and relaxation are at a disadvantage compared to pain because, while pain dominates and imprints on consciousness, they are typically quiet, subtle states. People need to find a way to have experiences that are not only pleasurable but are as important and riveting as pain. Religious experiences can be that powerful, but unfortunately, doctors can't prescribe religion. But by whatever technique - sex, intimate conversation, listening to music - people need to create moments when their attention is sufficiently drawn away from pain that they are almost pain-free, so that they can begin to recondition and reclaim their brains." 
This is great advice, and I'm going to work to include more of the things on my personal list in my life. Of course, with MS fatigue thrown into the bag of fun, including lots of the kinds of experiences that are the right kind of riveting for me is easier said than done. This reminds me of  Kate Wolfe-Jenson's "Fill-the-Bucket dates." A great idea for all of us, pain or not.

One treatment Thernstrom discusses that I'm extremely interested in and would love to try is a biofeedback-like f-MRI technique called neuroimaging therapy, which I also mentioned here. It's still in its early stages, but it essentially allows you to train yourself to control your pain to an extent. Unlike distraction, here attention is manipulated by focusing attention on pain, as opposed to focusing it elsewhere. While in the scanner, you see activity in a certain part of your brain represented by a graphic of fire. More pain = more activity = bigger flames. Less pain = less activity = less fire. Thernstrom describes it like a high-tech form of meditation. One of the creators of the technique worried it was just "the world's most expensive placebo" but they were able to determine that the placebo affect is not what is occurring in this case. I really dig the idea of this technique, as it is based in neuroplasticity, something I've read a lot about and find utterly fascinating and just plain cool. I also, of course, love the idea of having control over my pain and without drugs and their stupid side effects. I don't know how widely this is available yet, but I'm going to bring it up at my upcoming appointment with a pain specialist neuro.

Another intriguing tidbit I took away is the effect smell can have on pain. Studies have proven that pleasant smells can serve as analgesics and that unpleasant odors actually enhance pain perception. Bring on the essential oils! And what a great excuse to have a pan of cookies in the oven with great frequency!

Lots of great information in this book, but for me the best part of the read was that feeling of connection.Chronic pain is a very lonely experience, because it's very difficult for others to understand. There were many moments where I felt blown away by how accurately Thernstrom described some of what it feels like to be in pain. And she often describes it in beautiful, lyrical language. At the risk of making this the longest post ever, I would like to share several long quotes that really connected with me. For others with chronic pain, I hope you feel a similar little rush that comes from realizing that other people really get it. For those without, including those who know me in real life but don't know too much about my pain experience, I hope it helps offer a little window into what it's like.



  • To be in physical pain is to find yourself in a different realm - a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?


  • She feels haunted persecuted by an unseen tormentor. Depression sets in. It feels wrong...maddening...delusional. She tries to describe her torment, but others respond with skepticism or contempt.


  • As has often been observed, pain never simply "hurts." It insults, puzzles, disturbs, dislocates, devastates. It demands interpretation yet makes nonsense of the answers. Persistent pain has the opaque cruelty of a torturer who seems to taunt us toward imagining there is an answer that would stop the next blow. But whatever we come up with does not suffice.


  • You try to wake yourself out of pain - it's not an infinite realm, it's a neurological disease - but you can't. You are in a dreamscape that is familiar yet horribly altered, one in which you are yourself - but not. You want to return to your real self - life and body - but the dream goes on and on. You tell yourself it's only a nightmare - a product of not-yet-fully-understood brain chemistry. But to be in pain is to be unable to awaken: the veil of pain through which you cannot see, the vale of pain in which you have lost your way. To be in pain is to be alone, to imagine that no one else can imagine the world you inhabit.


  • Elaine Scarry characterizes pain as not only not a linguistic experience, but as a language-destroying experience. "Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language," she writes.

Monday, August 29, 2011

Magazine Monday: Pain in Poetry



I've been using this little scrap as a bookmark for quite some time, meaning to use it for a Magazine Monday post. It's a letter to the editor response to the Time magazine issue devoted to pain that I've discussed previously here and here. I agree with the writer of this letter that Emily Dickinson's few words hit the pain experience right on the head. 

Pain has an element of blank;
It cannot recollect
When it began, or if there was
A time when it was not.

Sunday, August 7, 2011

Moving Madness

Well, we managed to get all moved into the new apartment. The unpacking and organizing process is coming along, but there's still a long way to go. No internet until next week, so I'm currently hanging out at a Starbucks, enjoying a few moments on the web after a going a week without. The no-web time was good for me, though, as I tend to waste a lot of time I could be using more productively or restfully.

the remains of my delicious iced coffee with milk

Monday, August 1, 2011

Magazine Monday: Time Mag & Pain, Part 2

As I noted a few weeks ago, the March 7, 2011 issue of Time magazine was focused on pain. Since nerve pain is a major part of my particular MS package of never-ending delights, I found the issue to be very interesting. The most substantive article in the special issue was Alice Park's Healing the Hurt. Park summarizes pain and points out how vital and necessary a function it is. Until it isn't. She then describes this scenario (when pain is chronic and not an important signal to stop whatever is causing it) and points out its less-than-pleasant-ness: "persistent, unceasing torment." True dat.


The bulk of the article, though, is positive and hopeful in its overview of new research into understanding the complex processes involved in chronic pain and in new treatments. I found to be particularly intriguing the idea of a biofeedback-like process using fMRI technology. A major potential upside to this kind of treatment is that it is non-pharmaceutical so it lacks negative side effects and the potential for addictions. I'm not sure how much of my brain fog to attribute to my pain drugs as opposed to just the MS, but I often daydream about the idea of not having to rely on meds to control the pain at all and thus not having to deal with any of their side effects. Beyond the brain fog, which is bad enough, I'm tormented by dry mouth which is a pretty major issue since I play a brass instrument for a living. I also think that the more body and mind-body awareness a person can have, the better, so I love the idea of retraining neural pathways to lessen pain.

Also discussed is the so-called talking cure, rightfully connecting pain and emotion on both a neurotransmitter and human level. A cure? No, but like meditation, I think therapy or any emotional outlet is an important line of defense to consider. I'm also a big believer in positive distraction, from art to media to people. If the pain's at its worst, I can't really be distracted, but most of the time, healthy distraction goes a long way.

Also worth noting from this issue is John Cloud's article Beyond Drugs which deals with CAM approaches to pain management such as massage, acupuncture, herbs, yoga, and qigong. With the possible exception of herbs, I'm all for CAM approaches to dealing with pain. Yoga, qigong and meditation have been helpful for me. I've not tried massage or acupuncture, though I'm intrigued by both and would like to try them at some point.

I just thought it was great to see a major media outlet like Time magazine deal with this issue in such a prominent way. I'm eager to see what transpires in pain research, especially with nerve pain.

Tuesday, July 26, 2011

Moving and an Apology

Well, last Monday I promised I would return to finish up my posting on the issue of Time magazine devoted to pain, but here we are. Luckily enough, my reading crowd happens to be particularly sympathetic to excuses like fatigue and pain. So, forgive me and come back next Monday for that promised post? Of course, next Monday I will spend the day moving, hardly a recipe for energy. So, I promise to fit in some advance writing this week in between finishing up with packing and have it all set up to auto-post.

I'll be moving closer to work (2-hour commute down to 1) which will make those days significantly easier on me. I'll be moving from a house to a first-floor apartment. So, no more stairs up and down to the bathroom, which will be much better for me, especially for the days when I don't have enough feeling in my feet. But there is a bit of an ugh or blech factor of apartment living for me, like less privacy and hearing noisy neighbors. But also on the big plus side, I'll be moving into a complex with a pool and a gym! So, I finally will have no more excuses for my neuro for why I haven't been using a pool for exercise!

these two window peekers are VERY excited for that pool!

Wednesday, July 20, 2011

Thankful Thursday: blog love

It's been a while since I've gotten my blogger love on. So, time for some more gratitude!

I'm grateful for:

These bloggers all offer me different things, but they all write beautifully and with great insight. They make me think, laugh, ponder, reflect and hope. Thanks, bloggers!

So far I've featured bloggers in this series that I've been reading for awhile. Next time I'll feature some of the bloggers I've only discovered recently.

Monday, July 18, 2011

Magazine Monday: Time Mag & Pain

Time magazine did a special double health issue focusing on the subject of pain way back in March, and I've been meaning to write about it ever since. Well, better late than never!

March 7, 2011 issue

As you may or may not know, nerve pain is a major part of my MS experience and very much affects my daily life, so these articles were very much of interest to me.

In The End of Ouch? by Dr. Mehmet Oz, the emphasis is that chronic pain is a serious and major problem, even a disease in and of itself, but there is hope because it is starting to be recognized in a new light. He suggests the following advice, something that I know has helped me:
Meditation may benefit chronic-pain sufferers by reducing the emotional impact of their condition. A settling, transcendent state puts the pain in perspective and helps it dwindle in importance. 
He points the way to this relaxation guided meditation exercise video from the American Chronic Pain Association. I think guided meditation like this can be helpful, especially if you're new to meditation, although I don't find this particular exercise to be all that worthwhile.

I would also recommend this exercise by the wonderful Pema Chodron, an example of Tonglen meditation. I love the idea she presents of changing pain into compassion.

I've had a consistent meditation practice on and off over the years, and I really want to get back into it and make it a regular part of my life. I try to practice life in a meditative state as much as possible - to live in the moment. My pain constantly calls attention to itself, and I've had to learn to accept this. Even though I feel the pain, I've gotten to a place where I can just be with the pain without letting it control me. Unless the pain is at its worst - when it is, all the meditation exercises in the world aren't going to help the constant loop in my brain regarding how bad my feet and legs feels. But meditation generally helps. Whether you deal with pain or not, give it a try!

I'll be back next Monday to deal with the meatier article in this issue of Time on pain which I seem to recall had lots of stuff I want to comment on and share.

Monday, July 11, 2011

Magazine Monday: lol



I was pleased to see this article on laughter yoga in the most recent issue of MS Focus magazine. I've always wanted to try laughter yoga, and would love to take a class sometime. I love laughter and I love yoga, so I love the idea of the combo. Even though at least some of the laughter would be fake or contrived, there are many proven benefits of "putting on" certain feelings - and often the feelings become genuine in the process. How can you not feel some joy when watching the following video, just one of many examples of the practice I found on youtube...


I'm pretty sure my niece would totally dig the practice, too, so I think I'll try doing some of these exercises with her the next time I see her. Have you ever tried laughter yoga or would you like to?

Sunday, July 3, 2011

Wabi-Sabi

wabi-sabi, in Kanji

Following a trail of links while traveling in blog-land today, I happened upon the Japanese term Wabi-Sabi.  One of those words that is pretty much impossible to simply translate into English, it's often described as a "way of living that emphasizes finding beauty in imperfection, and accepting the natural cycle of growth and decay." This is a major simplification; one site likened English translations of the term to be as difficult as describing the taste of chocolate. In any case, I love the idea of this concept, or worldview, and will add it to the list of Asian stuff I find awesome, like Thai food, Zen, tea, gardens, and Kaizen. MS offers plenty of imperfection, as well as cycles of growth and decay, and my MS muse is all about the wabi-sabi way. There is much beauty to be found, even in MS-land.

Wednesday, June 29, 2011

Wordless Wednesday: CSA goodness

this week's bounty from my CSA share. yum!

Monday, June 27, 2011

Thoughts on Targeted Ads & MS

Ever since I liked The National MS Society on Facebook, I've been noticing tons of MS-themed ads peppering the sides of the site. In case you're not familiar with the concept, this is an example of targeted advertising, wherein data is collected about people in order for businesses to "target" potential customers in their target markets. This is a cost-effective strategy for businesses. Someone selling maternity clothes, for example, ideally wants to advertise primarily to/at pregnant women. Another example is if you visit a particular website, you might notice that ads for that website (or product you were looking at) will show up on the sides of other websites over the next few weeks. The site wants to keep their product or name in your mind.

Targeted advertising tends to stir some people up. The main issue these people have is about privacy. They don't like the idea that data is being collected about them and that the data can be used in attempts to manipulate them. My feelings on the subject are mixed. I absolutely recognize the business perspective. It makes sense to prefer to direct your ads at those most likely to be interested in what you are advertising. I also recognize this as a positive from the perspective of a customer. I don't want to see ads for products or services that have zero interest for me, and I sometimes want to see ads for things I'm in the market for. (Other times, of course, I'd prefer to see no ads at all!)

The huge number of MS-themed Facebook ads, though, have left me feeling a little uneasy or annoyed. The first ones I noticed were a constant presence for months, and I still see them quite a bit - those advertising the famed liberation procedure for CCSVI. Now, I have tried not to form an official opinion about the whole CCSVI thing. I'm very interested in the research being done and I will continue to pay attention to the issue. However, I certainly have reservations. These are based almost entirely, for better or worse, on the rhetoric that so many of the proponents of the theory use. I find it off-putting and suspect. I've been working hard to temper these negative feelings, but it doesn't help the situation at all to constantly see these Facebook ads, which, if anything, make the whole thing seem that much less credible to me. I mean, isn't there something a little ridiculous about an ad on a social network for a medical procedure like this?

Getting Liberated with Facebook

I'm also annoyed to see ads offering miracle cures or other such nonsense, like those that follow. I say this without having actually looked at the sources advertised. I'm making assumptions here, but I don't think they are unreasonable.

the answers you've been looking for, thanks to FB!
However, many of the ads I've been seeing fall into that category that I see as a positive to both businesses or organizations and consumers, like those that follow. I don't at all mind seeing ads for MS-related products like cooling vests or ads for various MS fundraising events or ads for MS resources.

MS resources advertised on Facebook

I do, though, have some concerns in regards to privacy and data collection and all of that. While I'm relatively open about having MS in many parts of my life, I'm not sure that I want there to be that MS patient piece of data floating around about me. It's important to note that I've never described myself as such on the social network - all I did to spur this constant barrage of ads was like the MS Society. So, presumably my brother and others who have also liked the MS Society's Facebook page but don't have MS, are also seeing these ads. (I know my brother reads this blog, so please comment and let us know if you have noticed any!) I haven't liked all that many organizations or businesses, and I don't really share very much information about myself on Facebook, so maybe I just notice what seems like a ridiculous amount of MS-themed ads because I haven't given them that much else to work with other than that I'm a young female who likes music and has some sort of connection to the MS Society. Maybe I'm partially bothered because I don't like the constant visual reminder that I have MS every time I visit the site, because I'm aware of that fact too much as it is.

So, enough of my ramblings on the subject. What do YOU think about targeted advertising in general and especially about targeted ads and MS? Do you notice MS themed ads often on Facebook or other websites? Are you concerned about how data related to your health is collected and used?

Tuesday, June 21, 2011

All I Ever Do

...is sleep.

This according to my 5-years-old-and-sleep-is-so-boring niece.

My mom and I hang out with her to get our princess movie and barbie fix one day a week, and she knows that I tend to "rest" through a portion of that day. Well, yesterday was one of those days when my MS just doesn't feel like playing nice and the fatigue just wouldn't stop. I ended up taking two naps yesterday, a most unbelievable concept for her young mind to grasp. I can only imagine her distress if she were to find out that after this day of mostly just sleeping I went home and slept for sixteen hours straight!

I know that one day a long way down the line, she'll come to understand that sleep is, in fact, an awesome use of time, but I hope and pray that she never understands MS fatigue.

Monday, June 13, 2011

Magazine Monday: Cool Sheets

Here's a little blurb from the May 2011 issue of Shape magazine. Not directly MS related, but since both heat and sleep can be contentious for many of us, I thought it was applicable. The image probably isn't too readable, so I'll summarize. Basically this lists three new products for ensuring a cool night of sleep. Sheex Sheets: sound really nice, but far too pricey for me right now. The Stress Ease Comfort Reader Pillow delivers some chill to your neck - sounds like an item I'll add to a gift wish list. Brookstone's Bed Fan: blows breeze under top sheet - could be great, could be annoying. In any case, three products that may be beneficial to some of us!


Any tips or products that you use for staying cool at night and getting some good sleep?

Friday, June 10, 2011

5 Things Friday: Coming Posts & My Week




 5 Posts I'm Planning to Write Soon
1. Targeted Advertising & MS
2. What You Do vs. Who You Are and how MS affects the situation
3. MS & fiction - reviews of novels wherein MS is a "character"
4. An account of my strangest and most annoying symptom
5. My awesome sister is going to write a guest post. (Right, Traci????)

glorious Colorado hike
 5 Things I Did This Week
1. Gave a commencement speech*, during which I started crying, which is weird for me as I cry maybe once every two years, not counting during movies
2. Went on a LONG hike in Garden of the Gods Park in Colorado Springs, CO - GORGEOUS!
3. Took lots of extra drugs and had a rotten night when the long hike made my pain super bad. (But it was SO worth it.)
4. Had a garage sale, which will also be happening tomorrow
5. Made delicious homemade garlic & red pepper hummus

* I'm not really that special to be asked to do this officially at any institution. But my sister is cool enough to ditch her own graduate school commencement ceremony to go hiking and hold her own ceremony wherein our mom was master of ceremonies and I was the speaker. I also received an honorary doctorate. The location was breathtaking and the whole experience was so much more personal and meaningful to all of us than a long, boring, official ceremony would have been. She also continued to wear her mortarboard and tassel and her Master's hood throughout the hike. A few people commented, but mostly they just gave her strange looks or averted their eyes. It was pretty great.
a big congratulations toTraci, Master of Music!!


Thursday, June 2, 2011

Thankful Thursday: more bloggers

I'm writing this post early because by the time it's published I'll be off in the mountains where I always feel extra thankful! But in addition to feeling gratitude for glorious scenery, I'm also still thankful for some awesome MS bloggers. Today I'll feature some of the younger bloggers I feel some sort of generational kinship with:

I am thankful for Jodi of Jodi Bean's Blog. I love that she shares lots of pictures and stories from her life at work as a social worker and with friends and family, in addition to being a great advocate for MS. And, like me, she embraces the awesomeness of being an aunt to some very cute nieces!

I am thankful for Jenn of Losing It. A great writer who opens up about life and life with MS with honesty and humor.

I am thankful for Dan and Jennifer Digmann of danandjenniferdigmann.com. This couple takes their unique story and uses it as an advocacy platform. Positive and energetic, they embody the idea of not letting MS hold you back. And, they hail from Michigan, where I attended grad school, which holds a special, mitten-shaped place in my heart.

Wednesday, June 1, 2011

Mostly Wordless Wednesday: On the Way to...

I've had a busy week traveling a bit and spending time with family. And today, I'm in my dear car (Lola) with my mom and sister for a lovely 13-ish hour drive to one of my very favorite places, COLORADO!!

Lola likes the view just as much as I do!

Friday, May 20, 2011

5 Things Friday: Symptoms & More!

Who doesn't love a good list? This new series, 5 Things Friday, will just be various lists of 5 things. To make this seem cooler, I even made this:


Now that you're thoroughly convinced on the coolness factor, here we go! Since this is an MS blog, I'll start with an MS-related list. Since we are all not only our disease, I'll also throw in a more general about me kind of list.

Five MS Symptoms I've Experienced

  1. numbness
  2. assorted paraesthesia: tingling, itching, buzzing, etc.
  3. bladder & bowel issues
  4. foot drop
  5. double vision
(unfortunately, this is not a comprehensive list, but a mere sampling)


Five of my Favorites

  1. color: green (much to the dismay of my pink & yellow loving niece who tells me that I should not have green as my favorite color because "it's the color of POISON!")
  2. movie: Life is Beautiful
  3. music: In terms of genre, classical. If forced to choose favorite composer, probably Beethoven
  4. book: I couldn't choose even if you tried to force me, so pleases don't try. It's hard to find a book that I don't like. I end up finding something to like/love in pretty much everything I read.
  5. food: Thai. Mexican and Indian are runners up.
There you go. Now you know a few more things about me! Have a wonderful weekend!

Thursday, May 19, 2011

Thankful Thursday: bloggers

I think a regular practice of keeping a gratitude journal or just taking time to reflect on things we are thankful for is an important part of living our best lives. And sometimes sharing these thoughts with others is a great means of spreading the love - thus, the Thursday edition of the weekday blog series I'm trying out.

What better topic for my first Thankful Thursday post than blogs and bloggers? There are so many wonderful blogs out there in web-land and I have far too many to ever stay on top of on several different topics. I'm amazed at the number of MS blogs out there and wish I had the time and energy to explore more of them. I have  found a handful, though, that I'm truly thankful for and I try to keep up with everything they write. I'll highlight just a few in this post and will highlight a few more next Thursday. If you aren't already reading the following blogs, you should be!

I am thankful for Lisa Emrich, the blogging superstar responsible for the big MS blogger list, the organizer of Carnival of MS bloggers, and author of Brass and Ivory. Lisa is such a great source of information and she stays on top of all the latest MS news. She also shares my passion for music and often posts great videos of fun or inspiring music.

I am thankful for Kate Wolfe-Jenson, artist and author and inspiration of Dancing with Monsters. I adore the way Kate thinks and writes. She often makes me reflect and think about things in different ways. I always leave her blog feeling inspired. I recently purchased her book and can't wait to dive into that as well.

I am thankful for Judy of Peace Be With You, the wonderful poet of haiku in triptych. I love the choice of medium and the way she fits powerful insights, images and emotions into 51 syllables post after post.

What are you thankful for on this lovely Thursday?

Tuesday, May 17, 2011

Tuesday's TaDa!

I like the idea of having some regular "series" on the blog, like yesterday's Magazine Monday where I'll discuss an MS-related tidbit I've read in a magazine. I have ideas for all of the weekdays, and I'll try to "premiere" them all this week. Then you'll probably see them here and there, but not every day and sporadic, occasional regular non-series posts will resume.

So, for Tuesday's TaDa! I'm going to celebrate a personal accomplishment by sharing it with y'all. I tend to put down or brush off my successes and I know this isn't always healthy. I don't want to brag, of course, but I think taking a moment to be proud of something is a good thing.

Today, my mom and I took an 80 minute walk along a lovely trail that we recently discovered. We're both trying to exercise more and work on fitness and general health. I'm also trying to lose some weight. I've been counting calories pretty consistently as well as trying to fit in more exercise. Exercise can be tricky for me, because most forms of it increase my nerve pain in my feet and legs. My neuro wants me in the pool every day since that won't aggravate the pain, but I'm not really much of a swimmer and don't have easy access to a pool. I've found that taking some preemptive meds before something like this vigorous walk helps mitigate the damage. I also find being in nature to be a great distraction from the pain. Anyway, I've lost about 20 pounds and I actually weigh what it says on my driver's license, my first weight loss goal. I still have a ways to go, but today I'm going to be proud of this accomplishment.

I've reached a weight loss goal and I'm exercising somewhat regularly, like today's awesome walk! TaDa!!!!!!!!!!

my favorite spot on this awesome trail
Do you have a TaDa to share? I'd love to hear about it!!

Monday, May 16, 2011

Magazine Monday: Violet Fruits




This blurb from the May issue of Self suggests that eating violet fruits like blueberries and plums could prevent MS because they prevent the production of hydroxyl radicals. Haven't heard this one before, so thought I'd share. It doesn't say so here, but I'm sure it can't hurt to eat them for those of us past the prevention stage...good thing they are delicious!!

Saturday, April 30, 2011

Challenge Day 30: a vocab lesson

A bookworm from birth, I've always loved words. I even love all of those long awkward medical words those of us with chronic illness inevitably learn. But the final prompt in the challenge I've sometimes been participating in this month is pretty tough. I'm tasked with creating a new word to describe something in MS life that the current lexicon doesn't cover. One of my primary coping mechanisms has always been humor, so it should be no surprise that this little vocab lesson leans in that direction.

muffins?


muffinitis, noun: a condition causing an individual to misspeak due to mental fogginess from MS or medication, best treated with kindness and giggles
"Please forgive me if I say something unusual. I'm not a moron - it's just my muffinitis acting up."

And the story: I often experience some brain fog and/or fuzziness from medication. Sometimes, this brings on some aphasia. I have a great deal of trouble recalling the simplest of words, or worse, I will replace one word with a totally unrelated word without even noticing. Although on occasion I find this to be quite upsetting, it usually is cause for much mirth. My family and I had quite a laugh on the day I asked, "Where are my muffins??" I first received puzzled looks in return, as no one was aware that I had any muffins or that any muffins were anywhere on the premises that day. I was upset, because I needed those muffins! I explained that I knew that my niece had taken them from me earlier in the day and I hadn't seen them since. Eventually, we figured out that I was, in fact, looking for my slippers.

muffins!


Do you ever experience muffinitis?

Wednesday, April 27, 2011

Challenge Day 27: Light a Candle

widely attributed to Eleanor Roosevelt
adapted from a Chinese proverb

I think the above quote is inspiring and very applicable to life with a chronic illness. I believe that feeling upset about the darkness and expressing those feelings can be important, but whenever it's possible it's always better to find a way to light that candle. This has tons of meanings and applications - from finding ways (perhaps new ways) to be as physically healthy as possible to finding new ways to be emotionally and spiritually healthy and engaged with the world to taking education and turning it into empowerment and advocacy. I hate MS and bemoan much of what it means for me and so many others, but I also celebrate the insights and truths that my MS muse has illuminated for me that I otherwise might not have understood.  I could go on and on, because light and fire are such rich metaphorical playgrounds, but with quotes like this, I think the words speak for themselves. It is my hope that this blog can serve as a lit candle.

brought to you by HAWMC Day 27 prompt

Thursday, April 21, 2011

Challenge Day 21: My Amazing Mother!

Today's HAWMC prompt is an easy one: write about someone you admire.There are tons of people I admire in this world from friends and mentors to famous musicians, writers, artists, athletes, and maybe even a politician or two. And as I've gotten more into this MS blogosphere, I've added plenty of bloggers to my list. The way some of you - many with significantly more health woes than I currently have - approach life with such hope and vigor amazes me. But on the long list of people I admire, no one else comes even close to my mom.
me and mom and mountains!

Beyond the fact that she gave birth to me and has put up with me all these years, my mom's admiration-worthy qualities are many. She has all the usual suspects, of course: kind, compassionate, smart, funny, and so forth. This woman has experienced more than her fair share of adversity and heartache in her life, but this is also a woman with more love and integrity and strength than anyone I've ever known - a woman who shows me by example how to come out stronger on the other side.

She never missed a concert or important event in my life, from fifth grade band all the way through four years as a music major in college...and that's a lot of concerts!! She made many sacrifices to ensure that I could pursue my dreams, but she never once let on that she may have been tired or struggling. I've never gone a second in my life without knowing that somebody thought I was pretty special, even when I didn't believe it myself.

When I started having some funny symptoms during grad school, she drove across the country to make sure I was okay. She drove me to my first MRI appointment (at 2 a.m.!!) and supported me as I struggled to walk down that long hallway. She was a sad but solid support when I was diagnosed with MS and she sat with me for my first steroid infusions. When things kept getting worse and worse but I was determined to finish the year and earn my Master's degree, she uprooted her life and basically moved in to help me out. When I could barely walk and certainly couldn't handle stairs but needed/wanted to get to school to teach or attend class, she provided curbside service - and with this building, that was no easy feat! She took care of many of the little things I had no energy to even consider tackling so that I could focus on getting through each day.

Because of her, I now have that Master's degree and I'm still pursuing those dreams. Because of her, I grew up knowing I could do anything. Because of her, I am a lifelong reader and dreamer.  Because of her, I write this blog! And because of her, I won't even worry that this post is an inadequate tribute (which it surely is) because I know that she thinks I'm great, regardless. I love you, mom!!

Wednesday, April 20, 2011

Challenge Day 20: Where I Write

Missed a few days again, but I'm back for Day 20 of the challenge. Today's prompt is to write about the space where you write. Well, I write in a few different spots, but the following list is always in play:

  • It's gotta be comfy. I'm not a sit upright at a desk kind of writer. I prefer to be in a at-least-somewhat-reclined position of repose. Generally, I chill out on the couch or in my big comfy chair with a blanket and my trusty laptop.
  • I need the right amount of the right kind of distractions. I can't have too much stimulation, but I can't be completely isolated either. I like to have things to look at, but it can't be so compelling that I can't pull myself away. So, a window with a semi-boring view will do. And certain objects are important. I like being around things that inspire me. I love being around books. I like to have stuff to play with (I tend to need little bursts of distraction in the middle of writing and other creative tasks) like the lime green ukulele I'm teaching myself to play or some bongos to drum away on or some coloring books and crayons. These fun distractions allow me to ruminate consciously or subconsciously on whatever I'm working on and come back to the task at hand refreshed. I should also mention that I'm a card-carrying member of Procrastinator's Anonymous, and I tend to procrastinate even on enjoyable and no-pressure tasks. But it sounds better to talk about it as a boost to the creative juices.
  • There's got to be a handy spot nearby to place some coffee, tea or water.
comfiest chair of all time!

That's pretty much it. All of that being said, I have found working in coffee shops and libraries and other public places to be a positive experience on occasion, but I generally find them a little too distracting to do my best work. And, I often fantasize about ideal office/working/reading/creating spaces. I love seeing the different workspaces featured on Lifehacker, for example. This might make me a bit of a nerd, but I'm pretty sure I'm a card-carrying member of that club already, too. What's your ideal writing space look like??

Saturday, April 16, 2011

Challenge Day 16, sort of

Todays WEGO HAWMC prompt is to write about a fictional cure for your disease. Since I didn't look ahead, I sort of already did this with my Wikipedia revision on Day 11 of the challenge. The details of Dr. Goodman's cure weren't elaborated on and the whole thing was more playful than in the journalistic vein today's prompt was going for, but I'm considering today's post retroactively completed.



Quality control provided by Gracey the Swan
Instead, I'll tell y'all about the awesome day I had today hanging out with my one-week-shy-of-5-years-old niece, Kylie. There were lots of stories - both in books and ones we made up together. There was coloring while watching movies. There were freshly-baked cookies, mixed up by an expert baker: There was fun with barbies and playing dress up and a tea party and plenty of imaginative pretending. All in all, it was a pretty awesome day and I'm thankful I had the energy to really enjoy it. Time with this precious girl is one of the highlights of my life. Back to the idea of imagining a cure for MS, the idea of Kylie getting the disease one day is heartbreaking and further fuels my intentions to become more of an advocate and activist in the hopes that one day Wikipedia really will read "MS was..."

Friday, April 15, 2011

Challenge Day 15: Breaking News!

What's that? It's APRIL, you say???

On what could have otherwise been a lovely Spring day, an MS blogger happened upon the above gross miscarriage of justice perpetrated by Mother Nature, and had no choice but to turn to chocolate. Said blogger was unable to even muster a chuckle upon reading her therapist's answer to the situation and remains in critical condition.


The above sad-but-true story was brought to you by: WEGO HWAMC's prompt of the day: write a complete story that is only 2 sentences long.

Thursday, April 14, 2011

Challenge Day 14: Lies

These are all sadly from real interactions with people in my life. Line one is something I've been told (more or less) and its partner is the mental tag I added to their words:

my sister's neighbor's vet has MS, but you would never know it - she's fine!
so thus, you shouldn't be upset or worry.
MS is easily curable - just take drug x, herb y, or follow diet z!
and if you don't, being sick is your fault.
quiet people who keep their emotions inside bring the disease on themselves.
so why didn't you just vent a bit more?
well, you look really great!
because, after all, grooming standards should be lower for the ill.

I know, of course, that these are all, in various forms and ways, misconceptions and lies. But all of these conversations sometimes still haunt me, despite this knowledge. And there you have it, today's WEGO HAWMC prompted blog: a poem-ish list of lies or misconceptions about your health condition. Stay tuned fo an itty-bitty story tomorrow!