Conversations over Dinner

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.

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”

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.

This weekend Mandy and I traveled some hours to visit the home of my mother who is going to celebrate her 80th birthday this week. There was a big family party planned and everyone was looking forward to seeing each other. We were just ready to leave the house when the phone rang. It was my brother. “So, you’ve heard about Mom, right?,” he half-said…

Read Happy Birthday, Mom by Jake

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!

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”

Hi. My name is Mandy, and I am white. I mean VERY white. I was born this way and there’s nothing I can do to change that.

Oh, I have tried over the years. I tried sunbathing, but only succeeded in getting sunburn. Sometimes I freckle, but I never, ever tan. One spring I gave in to peer pressure and did the tanning booth thing. I didn’t really tan, but the blinding whiteness was toned down a bit. I still can’t believe what they charge for tanning booth time! Really, I’m not that vain. I tried the self-tanning lotions, but only managed to turn orange and blotchy.

So, I have resigned myself to the fact that I am white. I’m no longer interested in risking my health for the sake of a “healthy look.” My skin may be white, but it is healthy skin.

It seems to be socially acceptable for friends, acquaintances, and even strangers to comment on my paleness. Some people take a strange delight in comparing my pale skin to their own darker tone, as if they’ve won a contest of some sort. Good for them. I, however, have accepted my skin just the way it is. Let’s just say I have a creamy complexion, or skin like porcelain. Yeah, that sounds pretty good.

Hi. My name is Mandy, and I have skin like porcelain.

Wow, what a weekend!

Friday evening we went to the lodge where we had dinner with our new “gang.” The jukebox played oldies and we sang and laughed and had a wonderful time.

Saturday, we managed to do an incredible amount of yard work during the perfect spring weather.

Sunday night, our friends invited us over for dinner out on their patio. They had invited another couple and they were easy to get to know and a lot of fun. We played lawn games and 70’s hits. Again the evening ended with laughter and singing.

Today Jake and I went out to breakfast, then grocery shopping. Back at home, Jake settled in for a snooze in front of the TV while I sat outside in the under the maple tree and chatted on the phone with Emily. We’ve been having great heart-to-heart talks lately.

Then we decided to go downtown and stroll for awhile. Then we had a late lunch/early dinner at a Thai restaurant. It was delicious and relaxing. Then we decided, this being Memorial Day, that we would stroll through our local historic cemetery. Since we couldn’t visit with our own dearly departed, we decided to visit others. On the way home, we stopped for an ice cream treat.

These past several days I have been doing well, physically. Headache-free, fatigue-free, and able to manage short walks, I have had little reason to complain. I need to get some test results from the doctor tomorrow afternoon, so I just hope he doesn’t plan on bursting my bubble. As Scarlett O’Hara used to say, “I won’t think about that today. I’ll go crazy if I do! I’ll think about that tomorrow.”

Happy Memorial Day!

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…

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!

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.