Showing posts with label new year's resolutions. Show all posts
Showing posts with label new year's resolutions. Show all posts

Thursday, January 1, 2015

RESOLVED FOR 2015

I used to do resolutions which were top 10 lists for personal, career, health, writing life, etc. (see below). I was way too ambitious then, or maybe I really *could* do all those things then that I can't do now... Who knows? All I know is these long lists create too much expectation now. I'm thinking of a new strategy: one new thing to accomplish for each of these categories of my life, then check in on July 1 to see if I can sneak in another goal for the second half of the year. Who's with me?
And because I'm serious, here are my top 1 lists (2 different categories for body, mind or soul). You can create your lists according to your needs. This just works best for me.

1. Health (body) -- Exercise more regularly, even if it's easy. Just make it regular. MS means I shouldn't overdo it because of the risk of overheating, but while I'm in remission, I need to get my ass moving again. My arthritis, carpal tunnel surgeries and stomach issues have stopped me cold in 2014 and I need to overcome that.


2. And on the Multiple Sclerosis front (body) -- Drink more alkaline water. (Why alkaline? The normal diet of most people is far too acidic. Drinking alkaline water, like San Pellegrino sparkling natural mineral water, may be one way to achieve a more balanced pH. Or maybe not. Why does this matter? An acidic system is also inflammatory, and inflammation is a key problem for systemic diseases like MS. Here's more if you want to read up: http://www.jleukbio.org/content/69/4/522.full. 
The more I can do to focus on anti-inflammatory food, supplements, even water, the better I can maybe help myself with the constant challenge of inflammation (which also impacts my arthritis). So I am hoping to keep a water journal and use my phone to remind me, if I have to, to hydrate. If not with San Pellegrino, then with electrolyte water. I always feel so much better when I do! Maybe it is all a panacea but I hardly think I can hurt myself by drinking more water. And hey, if nothing else, this study shows it might help me with my reflux: http://www.ncbi.nlm.nih.gov/pubmed/22844861

3. Career (mind)-- Develop my career down a path that allows me to work days only so I can slough off third shift. As much as I love the lab, I don't love how shift work impacts my health. For healthy people, overnight jobs can take a toll on the circadian system, and that leads to imbalances across the entire body of systems. This switch will involve more networking with my website and some entrepreneurial effort, which begins on Jan 2 when I get a business license. I'll keep working in the lab until I can find a suitable alternative that pays close to the same thing, but I've made it my goal to start the migration back to the 9 to 5 lifestyle. It could mean shifting slightly from sleep technology to health literacy or sleep health education. Fine...my goal was never to be Queen Sleep Tech.

4. Intellect (mind) -- Go back to reading for pleasure daily. Started doing this in November and I'm on a roll. I read a lot for work but never for fun. I have struggled to read for pleasure because of blurred vision from fatigue and failure to actually be able to comprehend words during a flare (which is why I left my editing life). I still read very slowly but that matters less than the escape I can achieve riding the waves of someone else's words.

5. Personal (soul) -- Practice more meditation and pranayama for health, relaxation and wisdom overall. What used to be criticized for being New Age snake oil now has some scientific evidence behind its efficacy for those with neurological disorders. 

6. Writing life (soul) -- Copy everything I have ever published and bind it into a single notebook; I find that going back and looking at my previously published work can be motivational for generating new writing. I hope to be motivated to do more nonfiction writing--about MS, about sleep, about mental illness--and having this piece of external "proof" of my validity as a writer is no small thing. Living with being a stay-home mother for most of my kids' lives, working as a writer: these are all ways to become isolated, and in isolation, we can lose sight of our presence out in the larger world. 

Friday, January 10, 2014

Need a New Year's Resolution? Support the search for a cure

My case of MS isn't all that bad. Not when compared to what others must go through. I live a mostly normal life as long as I don't overdo things. I work. I exercise. I am a parent and a wife. I can move around and speak mostly in complete sentences and see. I don't have to wear a diaper. I don't have to sit in a hospital with an IV in my arm (in fact, I never have). I have meds that will cover most of my shortcomings: usually something for migraine pain as needed, and daily help with fatigue, for instance, as well as OTC goodies like Imodium and GasX to get me through the stomach issues that sometimes come as side effects from my DMD.

But I'm well aware that this is not the case for many--those who are on disability or who are in the process of applying for it because they can no longer do the ordinary things that the rest of the world can do (and takes for granted). Like working, exercising, parenting, speaking and using the toilet. The curse of MS even excludes, for some, being able to use things like smartphones. Imagine having a disease that makes it impossible for you to use your Android or your iPad. Not being dramatic here.

This is why we need a cure: otherwise lovely, vibrant people with dreams and hopes and goals just like everyone else are literally enduring the slow shredding of their nervous system under attack by an immune system "gone wild." The frustration of watching one bodily system after another begin to do bizarre things ("word salad," anybody?) or slowly fail (everyone's favorite, incontinence... try walking that treadmill in the gym with this always in the back of your mind) simply cannot be appreciated unless you are one of the unfortunate ones who deals with this every minute of every day of their lives.

While many major illnesses like diabetes and heart disease--in some cases, even cancer--can be shown to originate in poor lifestyle habits (sedentary lifestyle, poor diet, drinking or drugs or smoking, for instance), MS does not happen to someone because they made bad choices. Perfectly healthy people with good lifestyle habits still come down with this devil of a disease. The need for research money is critical to finding a cure; studies require funding, lots of time, and lots of willing participants to make the possibility of curing MS a reality.

|| If you'd like to read a book about the current approaches to MS, you might want to try Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by HL Weiner (2007).  ||

Below I've posted some links to recent news to show you what kind of headway researchers are making. It seems we are so close to a cure, and yet so far away. If you are putting together some New Year's resolutions this year, please consider donating to the cause of curing MS. MS is no longer a rare little disorder that somebody else gets; more than 2.1 million people suffer from this lifelong chronic neurological disease and without a cure, we won't be able to prevent it either.

Let me be frank: MS sufferers and their loved ones are hit up ALL THE TIME for money for a cure. Many of them cannot afford the expensive medications. Costs measure on the order of $55K annually for just one disease modifying medication; this doesn't even begin to cover the other meds MS sufferers need for pain management, alleviation of muscle spasticity and defense against debilitating fatigue, as well as for assuaging the discomfort of unpleasant side effects like flushing or flu-like symptoms or chronic diarrhea.

If you're a reasonably healthy person, it can be hard to imagine what it's like to have to take handfuls (or needlefuls) of medications every day just to function quasi-normally (in order to do something like go to work in order to just pay the bills). If you can spare some change to help support the search for a cure, please do so by clicking on one or more of the links below (and thank you).




PLEASE GIVE IF YOU CAN, AND THANKS!


Accelerated Cure Project ||
Accelerating research toward a cure for multiple sclerosis
Benaroya Research Institute

Multiple Sclerosis Association of America

Multiple Sclerosis Research Institute

The National Multiple Sclerosis Society
Tisch MS Research Center





Thursday, January 2, 2014

RESOLVED

Dear Multiple Sclerosis, 

I resolve to return here on December 31, 2014 and say, "What? That's all you got?" and make a duck face. Y'all remind me and I'll Instagram the moment. #findacureforMS