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 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.