Tuesday, January 27, 2009

Mr. and Ms. MS

Sunday, January 25, 2009

Who Keeps Moving My Chair?

Do you know how people say, "I was so shocked that I almost fell out of my chair!"

Well, I did. Fall out of my chair, that is. Not once, but twice and shock had nothing to do with it.

The first time was a couple weeks ago at Ken's house. It was a rolling desk chair and I was in the process of sitting down. It was kind of a slow motion thing that ended with my ass on the floor. I thought maybe his desk chair wheels were faster-moving than what I was used to or that he had recently waxed his hardwood floors. Uh-uh. Apparently, it was me. Ken was right there and, although he seemed surprised by my lack of grace, he didn't seem overly concerned with the cause. So, I decided to forget all about it.

Until it happened again.

A week or so later, I repeated the whole thing while sitting down at my desk chair at work. One minute, I was lowering myself into the chair. The next I was on the floor. I work at a very casual office and my office attire usually consists of jeans and a sweater or a blouse and a jacket. On this particular day, I decided to dress up a bit. I'm not sure why, perhaps to give my coworkers a show when I landed on the floor.

I had on a fitted chocolate brown sweater and a straight leather, knee length skirt with an earthtone patchwork design. Thank GOD I was wearing pretty thick, chocolate brown tights and tall boots. Nevertheless, I was rolling around on the floor, in a skirt, trying to get up when I heard my coworker in a nearby cube say, "OH MY GOD! What happened? Are you all right?"
It was kind of hard to blow it off in this setting. First of all, there was a carpeted floor and it was the same chair that I'd been sitting in since I started working there last April.

So, it seems that I have a new MS symptom to add to the list. Falls out of chairs. I'm imagining it's balance related. All I know is that it definitely left a mark--on my ass and my ego.

When I discussed the second fall with Ken, he reminded me about the first fall and I thought Uh-Oh. He also proceeded to give me chair-sitting instructions complete with chimed in advice from his 13-year old son. "You have to reach back with your hand and hold on to the chair, making sure you are looking at your seat before you attempt to sit down," they explained, as if I ws a little slow or had recently suffered a head injury.

I found this all incredibly amusing since I have been sitting down on my own for quite some time, at least 42 out of my 44 years, I would imagine. I didn't know that there were rules to sitting and that, if I violated these rules, I might end up on my ass.

When I pointed out the humor in this advice, Ken clarified, saying that because I'm having eyesight and balance issues, there are new rules.

New rules? Why wasn't I notified? Where's my copy of these new rules? If I'm expected to obey the rules, shouldn't I have an opportunity to study them and challenge the rule makers?

Will there be any other new rules coming my way? Should I give up sitting in chairs with wheels? Or, should I stop wearing skirts and start wearing a crash helmet?

Thursday, January 08, 2009

The Up Side of Visual Impairment

I considered writing a list of all the things that suck about losing my sight, but I decided against it. It would be boring and pretty negative. So instead...here's my list of the top 5 GOOD things about not being able to see very well:
  1. I often mistake objects for other, more interesting things (e.g., I thought the scarf that my colleague threw on her desk was a colorful teddy bear that she brought to work for some inexplicable reason.) It's kind of like seeing the world as a funky, abstract painting.
  2. When I ride on the train, I now talk to the driver and/or strangers to get help with knowing when we've reached my stop. I've realized that Bostonians are pretty nice people.
  3. Since I don't drive anymore, the kids and I walk to and/or from school when the weather's nice, and I love walking around our neighborhood.  On other days, they get a ride with our very nice neighbor, Stan, who has a granddaughter in Zane's class. I get rides and other help from a lot of friends and neighbors who live nearby which makes me feel really good about my decision to move back to Milton.
  4. Dirt in my house is less visible.
  5. At 44-years old, I may, at last, be able to fulfill every little girl's dream of owning a pony...well, a miniature horse, actually.  Check it out -- I am so NOT kidding.  

If I get a service monkey AND a guide horse, I could teach the monkey to ride the horse. Then, when I'm looking to start trouble, the three of us could go into Star Market with a copy of the Americans with Disabilities Act in my pocket.

Monday, January 05, 2009

Sunday, January 04, 2009

MS Resolutions

I heard Puzzle Master Will Shortz say an interesting thing about New Year's Resolutions on NPR this morning. He said that if he thinks of a way to improve himself he tries to do something about it on any day and it doesn't have to wait until the new year. Every day is New Year's Day. A true practitioner of the One Day At A Time concept, if I ever heard one.

I kind of agree and try to be the best person I can be each day. When I fail, which I do on almost an hourly basis, I try to check myself, clean up any messes I've made, make any necessary apologies, and try to do better moving forward. I teach my kids that they can start their day over anytime, as well.

So, why is this post about resolutions? Because I would like to make some MS Resolutions. This is what I wish would happen with MS this year. More than wish. This is what I am resolving to visualize happening with MS this year. Obviously, a cure is the best option but since that does not appear to be on the immediate horizon, I will settle for the following in 2009:
  • Oral medication. Enough already with the needles. I feel like a pin cushion.
  • More access to quality MS-specific medical care like I get at Partners MS Center. I didn't realize until I started going there that I needed that kind of one-stop shopping in an environment that only treats MS. I know that I am very fortunate to be an insured individual in a major metropolitan area. It's too bad I am the exception rather than the rule and access is not equitable regardless of region and insurance status.
  • A decrease or at least a cap on co-pays for speciality meds. I hear horror stories all the time of people with MS who have health insurance but still have to pay over $100 per month for one maintenance prescription. I would probably have to do without or give up fresh fruits and veggies if my Rebif cost that much.
  • Federal funding for embryonic stem cell research to find a cure for MS. I feel pretty confident about this one under the Obama administration. I'm very sorry that Michelle Obama's father lived with MS for so long but I'm very happy that our next President and First Lady recognize the severity of this disease.
  • On a similar note, I hope that Michelle Obama agrees to follow the request of some pretty vocal MS activists who have asked her to wear orange to demonstrate her hope for a cure. It's a rocking color anyway and will look fabulous on her. If I am invited to an Inaugural Ball (still waiting), I plan to find an orange gown. Or, if I find a really DROP DEAD GORGEOUS purple one, I will wear orange shoes and make quite a statement. (Crazy lady, coming through!)

Happy New Year MS. You're going down!

How about you? Do you have any additional resolutions for MS?

Where the Heck Have I Been?!

I haven't posted to this blog in quite a while. I'm not sick or hurt or anything. Well, I still have MS and the usual fatigue and ongoing visual impairment, but that's not the reason I've been silent.

So, what have I been doing instead of writing here? Hmmm. Quite a bit and a whole lot of nothing all at the same time. Here's just a few of Lazy Julie's non-blogging activities:
  • Playing Wordsmith and Scrabble on Facebook.
  • Writing on my other blog (A Woman With A View) and submitting essays for publication and/or broadcast.
  • Working from home 4 days a week and in the office on Thursdays.
  • Adjusting to walking and taking public transportation.
  • Doing yoga on my own when I get off my big, lazy butt.
  • Seeing friends and getting to meetings when I can.
  • Continuing my search for the perfect magnifying glass.
  • Discovering a nearby library with a substantial Large Print section.
  • Trying really hard not to react when the Ex acts like a jerk (e.g., leaving before picking up the kids when we were 13 minutes late getting home).
  • Hanging with Bald Hot Ken who, if at all possible, is balder and hotter than ever.
  • Decorating anatomically-correct gingerbread women with my kids and friends.
  • Watching Ruby as the stable cat in the UU Church's Christmas play.
  • Shoveling and playing in the snow with mostly Zane (Ruby likes the cocoa but not the cold).
  • Discovering great music on the old boyfriend's online radio show.
  • Planning and cooking the most delicious Christmas dinner for my family who, for the first time in my 44 years, came to me for the holiday.
  • Going to our Annual First Day Hike at the Blue Hills, eating soup, and hanging by the fire, but leaving before the actual hike because it was 20 below 0 with the wind chill factor.
  • Playing hostess to my brother Tom and his family on their way from Christmas in New Hampshire to their home in Hawaii.
I hope to not wait so long before posting again.