MS Maze

I’ve got a new bra. How could that possibly relate to having multiple sclerosis?

Find out what my bra has to do with MS

The necessity of advocating for ourselves when it comes to health care is detailed in a report by CNN Medical Correspondent Elizabeth Cohen. It is a piece of advice I shall take to heart.

“I learned that I must always remain in control, double-check everyone’s work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions.” - Actor and Author Evan Handler

We have learned that there are few things more important than our simply enjoying our time together no matter where life may take us. MS, despite what you might think, has in some ways done us a favor. It has made our marriage stronger by teaching us that while time is the most precious of all commodities, the moments we spend together are more precious still.

Read Jake’s Story Here

When it comes to multiple sclerosis, are you an optimist or a pessimist? Is it possible to be both?

Lisa Emrich (Brass and Ivory) says, “It’s difficult for me to sort out whether I’m pessimistic or optimistic or skeptic or ignorant.” I’ll second that.

I call myself a pessimistic optimist.

Read the rest of my story here.

“Don’t worry, I’ll rally before then.”

“You’d better hurry up and get better, we’ve got that trip coming up.”

“I’m sure I’ll be getting better now… I’ve got so much to do next week.”

Even as we speak the words, we know how meaningless they are, but MS plays mind games in our house.

Does MS play mind games in YOUR house? Read the rest of our story here.

Hello. Allow me to introduce myself. I am MS; that’s short for multiple sclerosis.

ABOUT ME:

I enjoy tricking your body into attacking its own myelin, the material that protects the nerve fibers in your central nervous system. I know I’ve done a good job when the signals traveling through your CNS are interrupted, causing all manner of crazy symptoms, from simple numbness and tingling to paralysis or blindness. I manage to hold off medical intervention for as long as possible by masking symptoms, and even disappearing altogether for long stretches of time. For sport, I sometimes masquerade as other diseases. By the time of diagnosis, many patients have had their sanity questioned.

Read the rest of my story here.

“I wish you didn’t have MS but, since you do, welcome to the club.”  There was an instant connection through this crazy thing called MS. Once you meet up with another person living with MS, it’s as though you’ve given the secret handshake for an exclusive club. Even if you’ve just met, there is an instant connection of shared experiences and questions.

Read the rest of my story here.

I’m going to let you in on a little secret. I hate Mandy’s MS with all my heart. But I love Mandy more. I know that it’s not her fault and I’d do anything to rid her of the disease. But that doesn’t stop me from resenting MS and what it’s taken from us in terms of the limitations that it has put on how we live our lives. Mandy understands this and feels the same way. The thing to take from this is that we fight MS together. We have a shared hatred of the disease. We both own it, just as it owns us.

Read the rest of Jake’s story here.

“I’ve had such a hard time acknowledging I even have a disease. I’m a pain in the ass I think. I think of you all the time. You have 100x the issues and you seemed to have so much more grace and patience.”

That statement is an excerpt from the email of a very dear old friend. She shared some of the happiest times of my life, and supported me during the very worst time of my life. We’ve drifted apart since I moved hundreds of miles away, but the bond of friendship is a strong one, no matter how infrequently we speak.

Read the rest of my story here.

Multiple Sclerosis– especially Relapsing-Remitting MS– will drive you crazy. I’ve been asked to fly cross country  to give a seminar on a website promotion package that I’ve put together for a national trade organization. The conference where I’m going to speak is in Las Vegas, NV. So I said “Sure, I’ll do it.” and informed Mandy that we’re going to Las Vegas for a few days. I thought she might enjoy a little trip. Well, I said this a few months ago when Mandy was feeling pretty good. But like each of us knows, MS has a sense of humor– it lurks in the shadows, waiting for something that you really want to do before deciding to waggle it’s finger at you and say, “Not so fast– …

Read the rest of Jake’s story here:
Scaredy Scouts

Wow! MS really got the best of me today. I awoke feeling as though my limbs belong to someone else — maybe that’s why they won’t do what I tell them. About the only skill I have today is working this keyboard. Thankfully, my fingers are still on the job!

To top it all off, I have a migraine as well. Just further proof that when it rains… it pours.

Will I go to work tomorrow? It’s not looking good at all.

This is one of those days when having MS has really gotten to me. I apologized to Jake for how I look today and for all the chores that won’t get done. I hate when I do that. He knows it’s not my fault and so do I. Guilt is just one of those side effects of MS.

Maybe tomorrow will be better!

The woman was tiny, probably 4’11” and all of 90 pounds or so. She looked to be about 70 years-old and had a pleasant face and a warm smile. She sized me up quickly, looked me square in the eye and said, “I’ll hold the door for you… it’s very heavy.”

Read about my brief visit to “bizarro world” here… The Kindness of Strangers

The world won’t soon forget the regal beauty of Nastia Liukin and the awe-inspiring power of Shawn Johnson as they graced the gymnastic apparatus during the 2008 Beijing Olympics. Neither will I.Their faces betrayed none of the physical challenges and injuries they surely endured during years of practice and preparation. Cool and confident, they majestically glided through the competition, their routines appearing almost effortless. Twisting and turning, tumbling and flying, they seemed to defy the laws of gravity. They stole my heart and my eyes watered along with theirs as they received their honors. Their youthful smiles and jubilation were downright contagious. For a few moments I, too, felt victorious.

Read the rest here:
My Olympic Dreams

Question: What do you do if you are disabled, and you cannot gain entry into a retail store, restaurant, hotel, or other public building? How about if, once you get inside, you find that you cannot take full advantage of services offered?

You can read the rest of this story here:
Handicapped Accessiblity is Just Good Business

“You know, I wonder what it must feel like to be inside a body that’s in such incredible shape.” A second or two went by with no answer. Quizzically, I looked to my right. Mandy was looking back at me. She wore a pensive look when she responded. “I know,” she said. “I was actually wondering the same thing. I can’t even arch my back the way those girls do.” I felt the Beast settle back on the couch between us. It was smiling.

You can read the rest of this story here:
Olympic Musings