When you have multiple sclerosis, you don’t have it alone.

You may be the one with MS and the physical symptoms that go along with it, but you can’t build a fence around yourself in order to protect those around you. Like it or not, MS spreads its tentacles out and affects the lives of your loved ones.

Besides being a person with MS, you may be a sibling, a spouse, a parent, a friend, a co-worker. You count on others and they count on you.

Depending on how MS has manifested itself in your life, it will touch everyone around you in small ways, and in profoundly significant ways, both emotionally and financially.

Emotionally: We’ve all had to do it at one time or another. Watching a loved one struggle with health is not a pleasant experience. Relationships between husband and wife or parent and child are disrupted — not that it’s an entirely negative thing, but change isn’t always quick and it isn’t always easy. In the case of MS in the family, close relationships may forever be in a state of flux.

A spouse who becomes a caregiver may feel overwhelmed by responsibility and fearful about the future. It’s a perfectly normal response. Open and honest discussion is necessary to avoid the pitfalls of an ever-changing relationship.

A child whose parent has a chronic illness may have trouble expressing the fear and doubt that accompany it. Worry about the parent, as well as concern for their own fate, may not be apparent. Discussion should be initiated by the parent(s) and questions addressed directly and honestly.

Friends and co-workers will have their own questions about changes in your health. Some of them will find the topic uncomfortable and may avoid any mention of it. If your MS is not a factor in their lives — particularly on the job — you owe no explanations. However, if it will impact the relationship, you needn’t wait to be asked a question — it’s okay to broach the subject yourself and say what needs to be said. It is the unspoken question that has the power to come between you.

Financially: MS can be an expensive disease. The issue of health insurance, if you don’t have a good group policy, is a major obstacle for many people with MS. Individual insurance policies with a pre-existing condition are difficult to come by and are very costly.

Aside from the obvious expense of health insurance and out-of-pocket costs associated with medical care, some MS patients find they have to purchase additional items to maintain quality of life. These may include mobility aids and other assistive devices, home renovations, vehicle alterations, etc.

If you can no longer function on the job, the switch from full-time employment to part-time work — or unemployment — can have a dramatic impact on the household. In some cases, family members who take on the role of caregiver, with its associated restrictions, also experience a decline in income.

No one in the family is immune to the emotional and financial impact of a chronic illness. Those of us who have loved ones to lean are the fortunate ones.

Originally published on Care2.com’s Healthy and Green Living

Defense of Marriage Act. Even as a heterosexual married woman, I am offended by the phrase.

The name itself is disrespectful and suggests that homosexual unions cause harm to heterosexual marriage… that people like me have a need to defend our marriages against outside forces — other couples — and I must confess that I just don’t get that.

Respect for Marriage Act. Now that has a much nicer ring to it.

You don’t have to approve of my marriage and I need not approve yours, but we should all have the same rights under the law. It’s been my experience that many heterosexuals feel the same way… we just haven’t been very vocal about it. So comfortable and secure are we in our marital rights that we give little thought to those who only wish for that same comfort and security. Shame on us.

Respect is a two way street.

Photo: http://www.sxc.hu/photo/829079

Read this post in its entirety and answer the poll — Do you support the Respect for Marriage Act?: R-E-S-P-E-C-T my marriage

Multiple sclerosis can complicate a marriage, often forcing both individuals to adjust to drastic changes in expectations or marital roles — or it can bring you even closer together. Perhaps it will do both.

Maybe MS was part of the picture prior to the relationship or maybe it was diagnosed later. Either way, it has the potential to dominate every facet of your lives. It’s easy to become a little self-absorbed when living with chronic illness and, for the spouse, it’s normal to resent MS and the impositions it imposes. The trick is not to resent each other.

Whether you are in a traditional marriage or some other long-term committed relationship, it can weather many storms when treated as a true partnership and those storms are faced as a team.

Lack of communication can lead to feelings of isolation. It is truly a blessing when married couples develop a bond and can almost read each other’s thoughts, but when it comes to MS, nothing should be considered obvious.

The MS patient should be up front about symptoms that are interfering with the ability to function. To assume that your partner will instinctively know without being told is a mistake, and so is holding a grudge if they don’t. Even to the well-versed, sometimes the symptoms of MS are hard to detect.

Likewise, the caregiver/spouse must be able to speak freely about the extra responsibilities they face due to MS. Resist the urge to overprotect each other — that can lead to much bigger issues down the road.

Flexibility is a must. You may have the road map all laid out, but there will be detours. If you’ve got relapsing/remitting MS, the road may alternate between smooth pavement and rough terrain, with zero visibility. The willingness to alter plans and work around sudden change will serve you well.

Show your appreciation for the little kindnesses as well as major sacrifices. It’s not difficult to fall into a pattern of dealing with daily living while forgetting the niceties, but everyone appreciates acknowledgment of their efforts. No one likes to be taken for granted.

Nurture the relationship. The patient and caregiver relationship must peacefully co-exist with the husband and wife relationship rather than overpower it.

Romance is good for the soul. Whatever you do, don’t let that slide. It’s not so much the grand gestures, but the simplicity of a whispered, “I love you,” or an unexpected cuddle that will come back to you a thousand times over.

Originally published on Care2.com’s Healthy and Green Living

When you have multiple sclerosis, you don’t have it alone.

You may be the one with MS and the physical symptoms that go along with it, but you can’t build a fence around yourself in order to protect those around you. Like it or not, MS spreads its tentacles out and affects the lives of your loved ones.

Besides being a person with MS, you may be a sibling, a spouse, a parent, a friend, a co-worker. You count on others and they count on you.

Depending on how MS has manifested itself in your life, it will touch everyone around you in small ways, and in profoundly significant ways, both emotionally and financially.

Read this article in its entirety:  Multiple Sclerosis: It’s a Family Affair

Multiple sclerosis can complicate a marriage, often forcing both individuals to adjust to drastic changes in expectations or marital roles — or it can bring you even closer together. Perhaps it will do both.

Maybe MS was part of the picture prior to the relationship or maybe it was diagnosed later. Either way, it has the potential to dominate every facet of your lives. It’s easy to become a little self-absorbed when living with chronic illness and, for the spouse, it’s normal to resent MS and the impositions it imposes. The trick is not to resent each other…

Photo credit: http://www.sxc.hu/photo/1152277

Read this article in its entirety:  MS in the Marriage

Rachel Simon’s tender memoir, Building a Home with My Husband, is not something you should rush through, or read in small doses. It’s one of those books where you want to set aside a good block of time, curl up in your favorite chair, and savor a leisurely read.

Any couple that has survived a home renovation can attest to the utter chaos that ensues during that process, putting the best of relationships to the test. As Rachel and her husband forge through the process of blueprints and paint chips and deal with finances and insecurity, long-buried feelings bubble to the surface, as Rachel begins a journey of self-discovery and renewal.

The problem with home renovation is that time will not stand still while we choose doorknobs and install flooring. Rachel’s world beyond the doors of this home spins on. Work pressures, siblings, parents, and friendships must be tended to and nurtured. Things go wrong and plans go awry in home renovation and in life. How we choose to deal with those circumstances determines the final outcome.

It’s not really about the house. Building a Home with My Husband is about trust and compassion. It’s about love and acceptance. It’s about attempting to understand the complexities of the human spirit. It is about, as the title suggests, building a home.

Beautifully written!

Now it looks like I’m going to have to pick up a copy of Rachel’s first memoir, Riding the Bus with My Sister: A True Life Journey.

Building a Home with My Husband

by Rachel Simon

Mmmm… who doesn’t love over-cooked, dried-out pork roast? Well I don’t either, but that’s what I served up a couple of nights ago.

You see, I usually time dinner to be on the table around 6:30 pm. I’m not sure why, but it just always seems to work out to be 6:30. Last night, I put the oven temperature on a little too low and when 6:15 rolled around, I realized that dinner was going to be very late.

In a moment of obvious insanity, I decided to pump up the oven to an unreasonably high temperature, figuring that I’d catch up. What was I thinking?

Knowing that a watched pot never boils, I wandered over to my computer, finished up a post, and got lost in Twitter. Lost until almost 7:00 pm! That’s how I ended up with dry, crunchy roast pork.

And there sat hubby, doing his best to chew without offending. I apologized about the pork and pointed out that the brussels sprouts and salad were magnificent… He never missed a beat. “I’d be upset,” he said, “but how can I be, when every night you prepare such a nice meal for us?”

Lucky me.

“What are you staring at?,” I asked. Ann had a funny little look on her face as she sat across from me at the dinner table. “Nothing,” she lied. “I know what you’re thinking… you’re wondering how you ended up with this bald guy sitting across from you, right?” I laughed, for two reasons really. One, I knew that wasn’t the reason she was staring, and I love to throw her off base. Two, so far I’ve escaped the family curse of losing ALL my hair. OK, now she really would be laughing. But it’s TRUE!!! I still have hair on top. OK, it’s thin. OK, so I make it a point not to sit with my back towards the sunlight for fear of looking like I have an angel’s halo surrounding my head should someone glance my way. OK, maybe I’ve taken to ripping out hair loss articles from magazines and hiding them under the mattress the way I used to hide Playboy when I was a teenager.

Of the lies we tell ourselves as we age — and there are MANY — I suppose those relating to weight gain and mens hair loss might rank among the top three. I’ll let you guess at the third. But of the three, men’s hair loss is the only one that doesn’t have a natural solution. You CAN do something about it though. The hair restoration industry has come a long way in recent years. Hair loss solutions for men abound, from the simple rub-on creams and elixers to surgical remedies and simple, but effective toupees. Personally, I’ve never taken the plunge, but every so often I look in the mirror and wonder, “Is there anything out there that can make me look better than I do right now?” No, I decide — there’s not. I mean, how can you improve on THIS?

“What are you staring at?,” I ask…

Right after Thanksgiving I wrote a piece titled “Wheeeee!!!“ in which I stated that Mandy and I succumbed to Wii madness, purchased one of the video game consoles, and planned to delve into the world of Wii, Miis, and daily fitness tests. We guessed that perhaps, because of the physical nature of Wii gaming, playing Wii would actually prove beneficial to Mandy who, like so many others, suffers from Relapsing-Remitting MS.

Now, after a month of playing, we believe that we were correct and that Wii is proving itself well worth the investment. At the risk of being a commercial for Nintendo, I’m going to plow ahead and talk about our experience to date.

Read this  post in its entirety:

Mii Too!

It was one of those nights that captures the very essence of Conversations Over Dinner.

We came in from errands and shopping at 5:30 p.m. We had just loaded up on meats and I had to cut and wrap them for the freezer. By the time I finished cleaning the counter, it was 6:15 and I really didn’t feel like starting dinner. But we had no intention of going back out, we never order in, and we’ve got to eat… so I went for something that would have fairly quick prep time.

I settled in on tilapia, fresh broccoli, and a simple salad. I turned on the radio and sang to my heart’s delight as I cooked. It wasn’t long before I announced, “dinner’s ready!”  We proceeded to talk about Thanksgiving, Christmas, and some health concerns. Long after we finished eating, we chatted and laughed. Lingering over dinner is one of my favorite things.

I feel sorry for people who don’t make dinnertime into a big deal. Conversing while breaking bread together is the stuff of life! You don’t need to be a chef, or even a star cook. You don’t have to study for simple conversation. It takes a minimum amount of effort and brings great rewards.

If you haven’t done it in awhile, give it a try! Set a nice table, prepare a simple dinner, and let the conversation begin.

What’s going on here?

That’s my husband, making breakfast… something he does every day of the week.

He’s partial to omelettes and egg sandwiches, but also makes the fluffiest pancakes you ever ate!

He’s definitely more of a morning person that I. Most mornings I awake to the aroma of freshly brewed coffee. Mmmm…

We’ve worked out quite a partnership when it comes to the kitchen. Life is good.

So… today is my birthday.

This is my last year to be forty-something. Shhhhhhh!

Jim aka Jake and I lingered over lunch at our favorite french restaurant. It was all very romantic and satisfying.

We decided to skip cake, since we just finished the cake from Jim’s birthday a few days ago.

As for tonight, we’ll be in front of the television for the political version of smackdown. That will definitely be a popcorn-worthy event!

It’s Jim’s birthday! Happy Birthday, Sweetheart!

Today we witnessed one of the worst days in stock market history, watched congress stumble on what to do about our failing economy, and listened to some political mudslinging.

Even as our retirement accounts plummet in value and our own personal health care crisis looms, we took the time to have a toast and celebrate. We are very fortunate that we have the most important thing there is in life: love.

We will finish off the evening by watching one of our favorite television shows, Boston Legal, and will probably indulge in our usual snack of freshly popped popcorn.

How I love that man and our life together. All in all, life is good.

Idling at a red light one morning, I observed an elderly couple slowly making their way down the street, hand in hand. Her head was tilted slightly toward his and they moved in perfect synchronization.

They were to my left, heading forward, so I never saw them from the front, but I imagined faces that told of life well-lived, and contented smiles. I was drawn to them by their apparent closeness. I wondered if they have been married for fifty years, or if they are newlyweds. I wondered what their morning was like, and where they were headed; what hardships they have endured, and how they’ve kept their love alive.

They walked out of my field of vision, not knowing how deeply they touched the life of a stranger.