Friday, May 30, 2008

I am woman

I like women. I like them as much as or more than I like almost anybody.

But the women I like best aren't always strong, and they're certainly not invincible. They're creative, they're idiosyncratic and they're around if you need them. They complain, they console, and the can shop their way through virtually any crisis.

They know how to raise hell and they know how to raise children. They can spot a scam, a lousy doctor and a crummy boyfriend in under 10 seconds. They've perfected the withering stare that makes a nasty salesperson, flight attendant or coworker fold like an origami swan.

My favorite women may feel bad about their necks but they feel pretty damn good about their legs. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep and solitude, cashmere and caffeine.

They've got nerves of steel, the courage of their convictions and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic.

We are strong, and when one of us isn't feeling all that invincible, the other will take the wheel.
We are women.

- Lisa Kogan

Tuesday, May 20, 2008

A time of family vacations, swimming and laying by the pool, longer days and hotter nights, mosquitos, fireflies...memories of running through sprinklers, eating popsicles and spitting watermelon seeds...trying not to get too sunburned at the beach and as bathing suit season approaches, thousands of women regret not exercising more during those cold winter months.

I was born in July, so summer also means I have a birthday to celebrate. Summer has a lot of positives; however for MSer's, summer comes with a few negatives as well.

I made peace with my cellulite years ago. I can't really do anything about it. Also I am just under 6 feet tall. I am not a small person, nor am I a supermodel, so being a size 0 or 2 or even 8 is just not in my cards. Unless I want to starve myself, which I don't. I like having curves and frankly this past year they have come quite in handy as I have to inject myself sub-cutaneously every other day. For those not familiar with "sub-q" injections, you have to pinch about 1-2 inches of flesh away from your body to avoid hitting muscle. This is a heck of a lot easier when you have more flesh! In fact super-skinny people have to do subq injections differently than us curvy folks to avoid hitting something important, like muscles or organs!
So i am not going to look like Heidi Klum in a bathing suit and I am okay with that. 

I am not yet okay with the loss of my perfect porcelain skin. I was blessed with a lovely complexion. So even if I was curvy in my bikini my skin was quite pretty and so I hopefully wasn't offending too many people. I would get a nice smattering of freckles in the summer and if I wore sunscreen, I wouldn't burn too bad and would get a nice golden glow. Now to see me in a bathing suit you would think I was some sort of alien torture victim. The entire surface area from my belly button to my knees is covered in welts, and purple raised splotches that somewhat resemble hives. And when you have to give yourself injections every other day, by the time one set heals you are already covered with the new round of injection site reactions, so there is no "down time".

Don't get me wrong. I love my magical wonder drug that is keeping MS from eating up my entire brain and slowing the progression of my disease. It is truly a wonder drug and without it I shudder to think what would happen. I try to think of these bruises as Battle Scars...the proof of the ongoing battle I do with the MonSter and each welt represents a win for me! 
That is until bathing suit season arrives...and then I feel sorry for the poor people that have to look at my skin, and think A) I am very clumsy and walk into things constantly, or B) I am starting some strange and entirely unattractive tattoo trend.

Plus isn't going to the beach supposed to be a "vacation"? It is very hard to feel like you are on vacation when every time you suit up and look in the mirror you are slapped in the face with the reminder of your disease. And I haven't even mentioned my Favorite part about summer nowadays.
Two words: Heat Intolerance

See, for people with MS, getting overheated can cause really bad things to happen. They exacerbate current symptoms, can temporarily bring on new symptoms and basically just make you feel really, really awful. When my body temperature rises usually the following happens (in no particular order): my vision goes completely to crap and even magical glasses do nothing to help, the ringing in my ears becomes deafening, my hands and fingers do this buzzing/tingling sensation which is often followed by numbness, my feet and toes go numb and my legs start burning in pain and finally the Boa Constrictor grabs me around the middle for a big ole hug. Once this happens the cooling down process (getting into someplace with A/C and covering myself in ice packs) can reverse some symptoms. Others will then require medication. Then once all painful symptoms are under control you can return to the beach or the pool for Round Two. Lather, rinse, repeat. 

I think the beach can be a lovely relaxing place. I used to enjoy sitting under an umbrella with a crossword puzzle and a cold fruity beverage, watching the waves roll in. I have even been known to make a sand castle or two in my past. But it is very hard to relax when the heat brings on such painful things. As luck would have it, the beach is my husband's #1 vacation of choice and he is like a kid at Christmas when you put him on some sand in front of an ocean. 

We are headed to the beach with some friends this holiday weekend. I am packing my usual array of sunscreens, bikinis, cute cover-ups and hats, crossword puzzles (some large print!), my ipod and flip-flops. I am also bringing the 5 bottles of medication I require daily plus 3 injections, plus all 6 ice packs from my freezer. And I try to remind myself that "going to the beach" is really just an excuse for a change of scenery, to hang out with friends and maybe get a few new freckles. It doesn't require sitting 24/7 under the blazing sun. 

And if anyone asks, "Oh my! What happened to your legs and your stomach? What are those?"
I simply reply,"Those are my Battle Scars, thank you very much."

Quote of the day

"Every day may not be good, but there's something good in every day."
- Anonymous

Tuesday, May 13, 2008

Fear not for the future

Do you ever feel as if you are rushing every day towards the future, often barreling forward at such a speed that you are forgetting to stop and smell the proverbial roses?

I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.

Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”

There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.

Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,

Chronic: means I don’t ever get a vacation from MS. It is with me all the time.

Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!

Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)

But, Degenerative: something which worsens over time…

And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.

So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”

Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)

And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.

What if my vision continues to get worse and I lose my sight completely? Should I visit all those museums now so that i can at least see parts of the paintings??
Or if I knew I would start having trouble walking, should I do all that traveling now, while I don't have to worry about handicapped accessibility? 

If only there was a crystal ball so that we could all take a peek and know what our future holds.
In the meantime I guess we just do the best we can to Live in the Present and enjoy it as much as possible. 

Saturday, May 3, 2008

Happy Anniversary

It was a year ago that I heard those fateful words, "You have MS."
Some people might find it strange to "celebrate" such a day.
But I celebrate the fact that despite living with an incurable degenerative disease, I still find so many ways to enjoy life and to hopefully bring joy to others.

I celebrate because in spite of my recent relapse I have what my doctors deem a "stable" MRI and no new permanent damage.

I celebrate that I have found ways to help other people living with MS and raising awareness and money towards someday finding a cure.

My vision certainly isn't what it used to be...and maybe I have balance problems and days where I can't walk straight. I am in pain a lot more than I wish to be and numbness in my feet and hands makes for many clumsy days.
But looking at the big picture I consider myself very lucky to be doing as well as I am. There are many people who have far worse burdens to bear than mine. There are people who have to face this disease or other horrific diseases without the amazing support of family and friends like mine.

So to all my faithful readers out there (all 7 of you...Hi Mom!) Thank You for letting me put my thoughts and fears and joys and sadness out into cyberspace and for following me on this wacky journey. The adventure is only beginning and there are many more ways to help and to fight and laugh along the way. Thank you all for being my traveling companions as I walk down my own yellow brick road of life...wearing my red shoes!
Much love,