Category Archives: Blog

Walking in Multiple Sclerosis Shoes

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Due to my dichotomous personality, I always find myself talking in double entendres (but usually in a clean manner.) So here I am again and I’ll tip you off that I’m speaking of the literal shoes an MSer finds himself or herself wearing.

When I was a teenager, I wore light track sneakers (for sprints), cleats (for field hockey), Doc Maartens (for angst), and really hideous primary-colored flats (for style.) I had a great time in those carefree years and I’m looking forward to my 20th high school reunion this coming June.

I remember when I was in my early 20’s I paraded around in the new, hip platform shoes of the day. I thought they were the latest trend, although men and women of the 70’s had already tried them. I had a pair of really treacherous sandals that I almost broke my ankle in one day on campus. I also had two pairs of what looked like Chuck Taylor All-Stars with really thick soles. (*** my editorial obsession caused me to just fix this because I originally called them “Chuck Norris” sneakers! LOL..) They were pretty cool and very comfortable for traipsing around the Big Apple. In those days I walked like a maniac and was really fit, and I’d dance like there was no tomorrow in clubs in NYC, Trenton, and Phillie. If you asked one of my college buddies, you’d learn that I would be one of the crazy gals who would dance up by the band or to the dj’s pic before everyone else was “fortified” enough to get up and bust a move. Yeah, I was pretty uninhibited with myself.

I then became a health professional and found the joys of really good footwear: Asics, Nike, New Balance, Avia. They worked wonders for my slight decline in balance. I only crashed into one wall in my career, while rounding a corner into a breakroom. At that point neither I nor my coworkers knew I had MS. I also discovered the joys of sturdier, lower-heeled shoes with solid treads. Better for lifting the feet to avoid tripping over obstacles.

In my thirties I find myself deferring to my comfy sneakers, my Born slip-ons and closed-back clogs, and my flat-bottomed flip-flops. The flip-flops I have to admit are the most treacherous shoes I own, but I really hate to wear any footwear from May to September. So I’m more dilligent about picking up my feet. I don’t own any Uggs because pretty much everyone has them now and although they are quite exquisite, I must always be different and seek the gems that hardly anyone else has discovered. So now I’m lusting for a pair of Eastland Bree boots: I’ve had a hankering for them for about two years now, and if anyone from the family is reading this, they’d make a lovely Xmas gift. Size 7.5. Free shipping if you throw in some socks.

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Squiggy’s Even Better in Person

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This weekend was pretty event-filled: we celebrated my bro’s 40th birthday with the family on Saturday, then on Sunday Bill and I trekked to central Jersey for the commemoration of two of our Nat’l MS Society chapters merging into one big organization. There was a luncheon with awards for local volunteers— both individual and corporate—and some people were on stage telling their MS stories. A young woman benefited from the Society’s scholarship program (her mom has progressive MS and their family needed help sending her to college.) Two MSers talked about the support they receive from programs and volunteers. And one woman told of her fears as she recently took on the role of caregiver to her husband. A quiver in her voice silenced any rude conversations going on at the tables. This one got me on the verge of a waterfall of tears myself and I was happy to be wearing a baseball cap to obscure my overflowing emotions. Funny that other MSers don’t tend to get me choked up (usually): it’s the families and loved ones left in the wake of this awful disease that tap my deeper emotions. I witness firsthand the grief, anxiety, fear, and frustration they go through.

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By this point in the afternoon, everyone needed a comical break. Enter David Lander, aka Squiggy. Lander took the stage and told us about his meeting Michael McKean, the other half of the team “Lenny and Squiggy” from the old sitcom Laverne & Shirley. Now I love to laugh (probably inappropriately at times, but oh well—SUE ME!) I find that laughter keeps me from blowing a gasket on a lot of days. So Bill and I were almost on the floor listening to “Squiggy” tell of his adventures in Hollywood. And then Lander talked about his life with MS. I posted about David recently, so I had a particular interest in seeing him in person.

After the talk, lunch ended and people were able to speak with Squiggmann and have him sign a book or two. Bill and I of course got on line. When it was our turn we thanked him for coming and keeping MSers laughing. He then mentioned that by the time he got on stage (there was a 45-minute delay during the lunch), he had no idea what the hell he was talking about. We asked him if it was because they didn’t feed him lunch while he was waiting and he replied that he never eats before one of these things because he’s always afraid he’ll start BURPING! Howls of laughter. Now Bill and I have this fantastic memory of our hero David Lander, aka Andrew Squiggmann. Thanks again, David!

PS: Lander has a website about his life and coping with MS, and he accepts email:

www.davidllander.com

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Prelude to a New Article

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Sandy with Crazy Daddy

I’m warming up for a new article. Getting the fingers limber and receptive to WORK. Thanksgiving was very cheerful and fun with the family– my parents, who live in the next town over, have had the festivities since I can remember. I told my mom I’d like to take it over in the future, but right now our house is way too small. We had Easter one year and that was a real hoot. So no major holidays in here, and if I ever do one again, it’s gonna be a potluck and someone else can make the bird (or it’s coming already cooked and garnished from Hinck’s Turkey Farm nearby.) I love one of the mottos from Alcoholics Anonymous: Keep It Simple, Stupid ( K.I.S.S. for short.)

I did have a nasty “shot” hangover from the Betaseron yesterday. Probably one of the reasons people don’t take interferons. I’m usually pretty good on it, and the flu-like side-effects have calmed down over the past few years, but I get what I call a rogue shot– similar to a rogue wave— where the effects are bigger and more turbulent than the shots before it. I get one about every two or three months. It feels like a really intense flu for the day: fever, chills, body aches, nausea, and a mind blowing headache. Lovely. So yesterday the household just lounged on the couches and watched the tube. Even the cat. Very supportive– thanks!

I went to the local community college last week and signed up for an abnormal psychology class, which comes in an online format. I took a library science course online about three years ago and I think the format’s great. Almost like independent study with a once-a-week meeting online. I’m mentally gearing up for this because I need something to do with my wandering brain. Something stimulating and interesting. Starts in January, just before my mind goes into hibernation, so not a moment too soon.

Here is some pretty exciting news: I was interviewed by New Mobility magazine a few months back about my lengthy disability case and one of the editors and then-columnist Josie and I got to talking about other things. She mentioned that she might be looking to pass the MS Life column on to a new columnist. We kept in touch and I submitted a sample column for their January issue. They notified me recently and told me I was hired to be the new columnist for 2009. The MS Life section is published every other month and it contains a profile of an MSer, a piece on coping, a piece on new research, and a wildcard. The January issue will have a profile on Joan from A Short in the Cord, giving information about her fantastic chat room. Parts of the mag can be viewed online at www.newmobility.com and I also found it at the main branch of our library system. The magazine is for active wheelchair users and the MS Life column provides news to those with moderate and progressive forms of MS.

Anything else new and exciting? Probably not. I have to admit that I live the placid, understimulating life of an 85 year old man. Which of course can be good and bad, depending on the day.

Now on to Copaxone and its advantages and its drawbacks…..

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Melissa Etheridge Concert!

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Be back soon….I’m going to see Melissa Etheridge on Saturday night at The House of Blues. 18th row center! I’m really stoked because I’ve loved her since the early ’90’s when I first heard her single “Bring Me Some Water.” I like a lot of different styles of music, but I’m partial to good rock or blues with a guitar-playing singer. Plus I admire Melissa’s involvement with breast cancer research and prevention. Yahoooooo!

One more note: I welcomed a lot of chaos into my household during these past two weeks. We’ve had an ongoing, costly plumbing problem that is finally fixed and I just did about 9 loads of really ripe laundry. Yahooooooooo!

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MS Friend is now MS Strength

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Jen on AC boardwalk

Hey!

I think the alterations for the name change are complete— no more copyright infringements. Being a webmaster/geek and a fan of the mechanics of things, I’m most annoyed with the rebuilding of a ranking with Google. Yes, I’m into search engine targeting, Google stats, and key word optimization. It took about two years for my Suite101.com site to gain decent traffic and become widely searched, and I am part of their large, high-ranking site. So to start here from the beginning again with Google is a bit irritating. But I always think that the turtle wins in the end. And I love a CHALLENGE. I have a whole mess of topic ideas up my sleeve: may they SLOWLY exit my mind and come out through my finger tips onto this site. If you are a blogger, I apologize in advance for mundane and elementary articles, but they are the foundation for more advanced things. Feel free to just say “hello” in the comments sections!

Atlantic City Imax theater

Speaking of challenges, I was recently interviewed by New Mobility magazine about my long social security disability case. They have a website, although they only provide a snippet of the interview (under “MS Life.”) I did find the magazine at my local library. It’s for active wheelchair users as well as MS patients of all abilities, and it’s quite interesting. If you can get your hands on a copy, check it out.

Facebook is quieting down, although I still have my binges. I’ve found Joan (A Short in the Cord), Lisa (Brass and Ivory), and Linda (Brain Cheese) there, to my amusement. I believe they also have MS Society groups to join, but so far I’ve only hitched to HS reunion stuff. Funny to see long lost buddies.

That’s about it for now. Got a writing assignment that I need to get to. I hope to be back here in a few days with a new article, as I patiently wait for the search engine crawlers to once again find my pages and bring me back to life! Lawd, gimme strength (MS Strength)….

Peace out, you crazy cats—

Jen

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Help! I’m Addicted to Facebook

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Note to readers: I joined Facebook today at the urging of a friend because we’re having our 20 year reunion pretty soon. Well, the entire world is on it! Most of my entire HS class and other people I haven’t thought about in years. So much for curbing my computer addiction. I spent a good portion of the afternoon reminiscing and writing on people’s “walls” and leaving messages.

HELP ME WITH THE INSANITY (and get me to a yoga class which I can’t seem to accomplish.)

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Bearing the Multiple Sclerosis Load

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I’ve read the blogs at Blogspot and have seen lots of people dealing with stress, out-of-control symptoms, depression, financial strain, non-MS illnesses, and other things outside of the MS realm. I’m not a believer in organized religion, although I do believe in a force greater than ourselves. I like this well-known poem about faith:

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, had you not been there for me?”
The Lord replied,
“The times when you have seen only one set of footprints in the sand
are when I carried you.”

The Lord is not above, watching and playing Russian roulette with everyone’s lives. Allah and Buddha are not waiting for everyone to repent so that illnesses will go away. The greater power and magnificence lie within each of us. We are all a bit of divinity, and we are here to bear one another’s burdens. I cannot answer why some people have far worse cases of MS than others. I cannot fully know your life’s burdens. But I can carry your story of fear with me to the grocery store while I’m shopping for eggs. You in turn can bear my story of anxiety for the future as you go about your day. I can shoulder the pain of your MS symptoms, if only in mind and not body. Look here on earth for your divinity and many folks will be standing in line to lighten your load.

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