Archive for the 'Multiple Sclerosis' Category

Extraordinarily Ordinary

Written by Mandy on Saturday, September 6th, 2008 in Conversations, Marriage, Multiple Sclerosis.

If you had been spying through the kitchen window as we ate dinner tonight, you wouldn’t have seen anything unusual. Just two people eating an ordinary meal. What you wouldn’t have seen is how content we are to be sitting at that ordinary table in our ordinary kitchen.

Multiple sclerosis, not a shy entity, has been plaguing us of late. The past week was a difficult one for both of us, and the appearance of new symptoms reminded me that we can take nothing for granted.

Lord knows, we’ve got our share of problems, but we have each other. We have our quiet life and our peaceful home. As long as we can sit together, sharing dinner at that kitchen table, we’ve got more than most.

It was a wonderful dinner.

Is Jake a Scaredy Scout?

Written by Mandy on Tuesday, September 2nd, 2008 in Family, Health, Linked Articles, Marriage, Multiple Sclerosis, Travel.

Q. What is it like to be married to someone with relapsing/remitting MS?

A. It requires a great deal of advance planning and a certain amount of anxiety.

Jake’s article for The Health Central Network allows just a small peek inside the mind of a spouse/caregiver.

Read: “Scaredy Scouts”

Missing Teddy

Written by Mandy on Saturday, August 9th, 2008 in Family, Multiple Sclerosis.

I miss him already. My son, Teddy, is on a plane at the  moment, winging his way back to his home turf. For the last twelve days or so, he has injected a large dose of youthful energy into our usually quiet home.

I’ve been able to put some of my work aside, as well as some household chores, in order to be with him. We fell so easily into our roles, and I experienced a bit of an adrenaline rush just having him around.

My MS started acting up just days before his visit, but that adrenaline gave me strength. I’d like to bottle and sell that rush to other MS patients but, alas, it has a very limited shelf life. I was unable to fight the forces of fatigue and walking difficulty for the last two days of Ted’s visit. In fact, the cane made its reappearance today. But that’s okay — the visit was wonderful!

Now it’s back to reality… work and chores and such.

Teddy, you are a wonderful young man, and we miss you.

Summer 2008 Issue of MSFocus Magazine

Written by Mandy on Tuesday, August 5th, 2008 in Multiple Sclerosis.

Yours truly is featured in the summer 2008 issue of MSFocus Magazine. The article, “The Financial Reality of Multiple Sclerosis” is on pages 10-11.

MSFocus - Multiple Sclerosis Foundation

The Friends You Meet On Line

Written by Mandy on Thursday, July 24th, 2008 in Blog, Conversations, Friends, Multiple Sclerosis, Societal Issues, Travel.

I’m thinking about a friend tonight. Well, not a friend exactly. More of an acquaintance. Well, not an acquaintance exactly. You see, we’ve never met.

If you had told me a year ago that I would be sitting here, thinking about someone I’ve only known online, I would have told you that you had me pegged wrong. I’m more practical than that. More careful, more tentative. It’s just not my nature. A year ago, I hadn’t yet made my entrance into the blogosphere.

It was last August when Jake and I started Conversations Over Dinner, as a fun way to pass the time. Then on to MS Maze, The Health Central Network and In The Trenches Productions in a matter of months. Before I knew what hit me I was forging “friendships” with people online, people I would never meet.

Multiple sclerosis is one reason. Reading other MS related blogs helped me to deal with the things I thought were unique to me. I started to leave comments on other blogs and people began leaving comments on mine. By reading about their experiences, my own life was enriched.

I have a fantastic working relationship with the good folks over at The Health Central Network, but we will, in all likelihood, never meet. It all comes down to emails and phone calls.

Over at In The Trenches Productions, a group of women is working hard to reach out to women over the age of 40, and to keep them present and accounted for in the media. I admire what they do. My contact there is Debbie Zipp. I’ve never met her, never spoken to her on the phone. We’ve exchanged some wonderful emails, divulging a few tidbits of ourselves here and there, and I can only say that I genuinely like her.

I have a handful of online buddies out there that I’ve come to care about. I read about their struggles and their triumphs, and I wish them well. They do the same for me. It’s a strange new world, indeed.

So back to that “friend” I was thinking about. She’s had a harrowing couple of days, lost in airline hell. She has MS and I know, all too well, that she is very, very uncomfortable and longing for home. Hang in there, Sunshine!

In the Name of Love

Written by Mandy on Friday, July 18th, 2008 in Linked Articles, Marriage, Multiple Sclerosis.

Jake watches me struggle and fall. He stands by my side through doctor visits and medical testing. Every morning, before he wakes me, he opens the refrigerator door and pulls out a syringe. It’s a matter of routine, but its significance doesn’t escape him.

How many changes has he made to accommodate my need for assistance? Do I know even a small fraction of the silent sacrifices he has made on my behalf?

Read “Caring for the Caregiver”

It’s About the Journey

Written by Mandy on Wednesday, May 28th, 2008 in Linked Articles, Multiple Sclerosis.

While thumbing through MSFocus magazine recently, I came across an ad for a yoga DVD. It was advertised as having been designed by and for people with MS. It boasted a beginner level, and even a portion dedicated to yoga while sitting in a chair. Now that sounds like something I can do! One week later, on a lazy Sunday morning, I load the DVD, place my chair in front of the TV, and push the “play” button. Continue…

Mind/Body Disconnect

Written by Mandy on Tuesday, May 27th, 2008 in Linked Articles, Multiple Sclerosis.

I have a mind/body disconnect. See, my mind thinks it is 22. It really and truly believes this. Blissfully unaware of the 48 year-old body to which it is connected, my mind often takes on a life of its own. With little understanding of the ravages time and multiple sclerosis, it continues to dream big dreams. It envisions the future as an endless road of possibilities. It sees no obstacle or time limit. It does not know the meaning of the word, “impossible.” Continue…

The Bonds of Friendship

Written by Mandy on Wednesday, May 21st, 2008 in Friends, Linked Articles, Multiple Sclerosis.

Friend Wanted: Applicants must show aptitude for patience, understanding, and the ability to suspend disbelief. Must have own car. Must promise to accept last minute cancellations. Continue…

Mixed Bag

Written by Mandy on Tuesday, May 20th, 2008 in Jobs, Multiple Sclerosis.

I only meant to take a short rest period, but ended up in a very deep sleep, causing me to be very late with dinner, but it all turned out well in the end.

It has been a strange few weeks. My MS has been wildly fluctuating on a daily basis, and I’m never really sure where I stand. I was supposed to go back to my general physician this afternoon, to hear the results of a test he ordered. It has been 7 days since the test was performed, but he still does not have the results. Some mixup with the hospital. It never fails — the medical world and I simply do not mix well! Things never run smoothly. We’ll see how this latest snafu ends. Tomorrow I get to go to another doctor and, well, let’s just see.

Jake and I have been busy, each working on our respective career choice. It is good to be busy with something you like.

I hate to admit it, but we will soon be sitting in front of the TV to view “David vs. David” on American Idol. We didn’t really follow the season much, but we got caught up these last few weeks. They are both talented young men, and I’m sure they will both be successful.

Let the games begin!

From Health Central

Written by Mandy on Monday, May 19th, 2008 in Linked Articles, Multiple Sclerosis.

How Do You View Yourself?

Invisible Disabilities

Cue Theme from “Rocky”

Written by Mandy on Sunday, May 18th, 2008 in Conversations, Food, Jobs, Marriage, Multiple Sclerosis.

Nice juicy steaks ended a productive Sunday for us. We lingered at the table and talked of work for quite some time. We have our goals, and we have thrown ourselves wholeheartedly into achieving them.

I had a bad week, physically. Besides the MS acting up, it seemed that every other physical problem I’ve ever had decided to stop by for a visit. It verged on brutal. The funny thing is, my head is in a really good place. I feel inspired and enthusiastic about my future opportunities. I am definitely going to transition myself into a work-at-home situation before MS forces the issue. I am going to win on this one, and that is a wonderful feeling.

Busy, Busy, Busy

Written by Mandy on Wednesday, May 14th, 2008 in Jobs, Marriage, Multiple Sclerosis.

Busy, busy, busy. Jake has work lined up for days — which is an entirely good thing! As for me, I am working on three projects at once and have pitched two other ideas. Seems like I’m always on pins and needles lately, wondering which darts I throw out there will stick!

I actually drank wine with dinner tonight, for the first time in a very long while. The fact that I am still awake means that my MS fatigue has let up considerably — another good thing!

Jake and I are working hard at achieving our goals, and now that we’ve made some measurable progress, we are more energized than ever. The coming months could be a time of great progress. Hopefully, I will be able to concentrate more fully on all of that after next week’s doctor appointments.

When is a “handicapped accessible” hotel room not handicapped accessible? What if you can manage to get in the room, but not use the bathroom? Would you find that acceptable? If you are in a wheelchair, you don’t expect life to be simple, but you should be able to expect a reasonable level of accommodation when something is designated as “handicapped accessible.” Continue…

Out of the MS Guilt Trip Rises Hope

Written by Mandy on Monday, May 12th, 2008 in Family, Linked Articles, Multiple Sclerosis.

As far as I know, we have done nothing to create the MS which has unceremoniously barged into our lives. There is no evidence that it is caused by lifestyle or bad choices. It just “is what it is,” one of those curve balls that life throws your way, and you either handle it well or you don’t. It is not a choice. Still, I know that I am not alone in my MS guilt. Continue…