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, bruises...red 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."


Karen H said...

You are beautiful and stunning in your bathing suit! I can't think of anyone I'd rather sit next to on the beach. Love your body!!

Maggie said...

Hi Caroline - the weekend is over and I hope you and Chris had a wonderful time and you had no major overheating. We spent the weekend home sick for the most part but both of us are feeling better now, thank God.
Take care!!

ejd said...

Caroline, you have such a big and loving heart. I am so touched every day that with everything you have going on you have invested time and energy in helping make my big day so special. I don't think i will ever be able to express how grateful i am to you!! You are simply amazing!