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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

It’s a mind-boggling statistic, but approximately 13 million children right here in America are at risk of hunger every day.

September is Hunger Action Month. The Child Nutrition Reauthorization Act authorizes all of the federal school meal and child nutrition programs, which provide funding to ensure that low-income children have access to healthy and nutritious foods through the National School Lunch and School Breakfast Programs; Summer Food Service Program; Child and Adult Care Food Program; Special Supplemental Nutrition Program for Women, Infants and Children; and Farmer’s Market Nutrition Program…

Photo: http://www.sxc.hu/photo/799909

Read this post in in its entirety:

America’s Hungry Children at Risk

Two million children under the age of five die each year because they do not have access to clean, safe drinking water. Let that statistic sink in.

It’s easy enough to take safe drinking water for granted when it’s there for the taking, straight from the tap, right in the comfort of our own homes. There’s little reason for us to give it much thought, but that’s exactly what I’m asking you to do today, because an estimated one billion people in developing countries are not so fortunate. Their health and well-being, in fact, their very lives, are endangered every day for lack of something so basic as clean drinking water.

Your signature can safe a life… read the post… sign the pledge:

Money for Your Signature

You never know what’s going to touch a nerve.

I wrote an article for Care2.com’s Living with MS Blog called Handicapped Parking: A Guilt-Free Zone, that apparently hit home with a lot of people. Like me, many people struggle with either the guilt of using a handicapped parking space, or the anger of onlookers who do not understand invisible disabilities.

Some of the commenters brought up an issue I hadn’t considered — obesity. Is obesity caused by… or the cause of… disability, and should obesity accepted as a disability? Hmmm… lots to think about there.

Now I did expect to touch a nerve with last week’s Closed Minds Shout Down Disabled Woman in Wheelchair, and I was not wrong. Most folks are in my camp on this one — we’ve sunk to a new low in the health care debate and basic human decency. If you are not familiar with the story, please take a moment to read the post. This incident is a wake up call to America.

My son was in his senior year at a university half a country away, about a 13-hour drive. He lead me to believe that with summer classes and his work at a PBS television station, he would be unable to squeeze in a visit that summer. Naturally, I  understood his reasons, but was saddened nonetheless.

I hadn’t picked up on the clues. His strange questions about my bedtime, my travel plans, etc. One Wednesday afternoon I called his cell phone and he abruptly cut me off, saying he had just arrived at work and would have to call me later, if I would be home. I told him I would.

Later that evening, I received a call from him. He said he and a couple of his friends were considering a road trip before summer’s end, and if they decided to go ahead, would we mind if they all dropped in for a few days? I was bubbling over with excitement and started asking when he envisioned this trip, when I was disconnected. As I frantically tried to get him back on the phone, the doorbell rang. Lousy timing! I called out for my husband to please answer the door, because I just had to get back on the phone.

As I was dialing for the third time, I paced by the front door to see my husband standing there with the door wide open, looking at me, a strange look on his face. Just beyond him stood my son, phone in hand and a sly smile on his face. I’ll never forget the picture of him standing there. Several yards behind him stood his two friends, kids… well, young men now, that I’d known most of their lives.

Over the next few days we got to reminisce, laugh, play cards, share meals and reconnect. That was two summers ago now, but it still makes me smile to think about my wonderful surprise, forevermore a cherished memory.

Senator Edward “Ted” M. Kennedy was born into wealth and privilege, but spent his life advocating for the poor and disadvantaged.

He’ll be forever remembered as a champion of civil rights, equality, and bipartisanship. A leader in the fight for health care reform, which he said was the cause of his life, Senator Kennedy made it clear that health care for all was something he dearly wanted to achieve in his lifetime. Sadly, he will not see his dream come to pass.

If a comprehensive health care bill manages to pass during this president’s term, it will be due in no small part to decades of effort on the part of Senator Kennedy, and would serve as a lasting testament to his passion and commitment.

Read this post in its entirety and sign the petition honoring Senator Kennedy: Farewell to Senator Kennedy, Champion of Health Care Reform

Following up on our post, The Fresh Air Fund NYC Half-Marathon, we are pleased to report that the NYC Half -Marathon and raised a whopping $80,000 this summer!

The Fresh Air Fund would like to thank everyone who supported the event and invite you to view photos on their Facebook page here: http://www.facebook.com/freshairfund. You can also follow Fresh Air Fund on Twitter @FreshAirFund.

The Fresh Air Fund is a not-for-profit agency, providing free summer experiences in the country to New York City children from disadvantaged communities. Each year, thousands of children visit volunteer host families in 13 states and Canada through the Friendly Town Program or attend one of five Fresh Air Fund camps.

Video courtesy of Debbie Zipp of Women Over 40 Rock! and In The Trenches Productions

Death Threats?

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

As a child, I wanted the game of Monopoly more than anything. As Christmas approached I took every opportunity to make my wish known.

On Christmas morning, sure enough, there was a package with my name on it under the tree. It had that rectangular shape of a board game and I was sure that I would be maneuvering the thimble around the board very soon.

Instead, I was the recipient of a game called “Go For Broke.” It was the exact opposite of Monopoly… the Anti-Monopoly. The point of this game was to LOSE money! First one to lose their money wins!

I thought my parents had gone mad, but I conscripted my siblings into service and we played “Go For Broke.” Against all common sense, we competed to lose money.

Why Mom and Dad pulled this bewildering switch on me I never knew, but more than 40 years have passed and I still remember the lesson learned. You don’t always get what you want. And that’s okay. It’s making the most out of what we do get that counts.

Since then, I’ve received Go For Broke-like surprises countless times. When that happens, there is nothing left to do but play the game.

When I was sixteen years old, I applied for an assembly line job at a local factory. It was literally just a few steps from my own front door, so the location was ideal. My older brother and sister had already done time on the line, so I had some idea what to expect.

The factory manufactured Christmas ornaments and my job title was “clipper.” So what exactly does a Christmas ornament clipper do?

I’m sure you’re familiar with the little hook that you use to hang ornaments from a Christmas tree. Well, you know that little circular “thingy” (that would be the clip) on the top of the ornament that you put the hook on? We clippers attached those and placed the ornaments into the boxes as they rolled past us on the assembly line. I’m not kidding. Bet you thought machines did that; I suppose they do now. Strike that. These jobs have probably been outsourced to other countries.

Work wasn’t easy to come by in the late 70’s, and every high school kid in our small city lined up for the minimum wage work. The first day on the job was the toughest. They brought most of us right in and put us on the line. They explained that you had do so many clips per minute… or else. Out came the stopwatch. Shortly after that, the dismissals began. I’m proud to say that I was a pretty fast clipper.

Think Lucy in the chocolate factory. If the clippers don’t clip fast enough, when the boxes get to the end of the line, they have empty slots. Empty slots means that the”boxers” can’t cover them and load them into cartons. That creates a backup, which creates angry supervisors and the need to turn off the moving belt, which creates general unhappiness all around.

It was an afternoon shift, four hours on your feet at the line. In summer things really ratcheted up and I got to work eight hour days.

If you stuck around long enough, you were rotated into other jobs. Boxing, placing decorative decals on ornaments just before they went through a heat machine, etc. There was no air conditioning, but there were several huge fans blowing the stale air around, and a radio or two playing through the humming of machinery. It was noisy, but you could manage to chat with those closest to you.

There were lots of people who did this full time, mostly women. They knew all the secrets to staying out of trouble. Some wore gloves to protect their hands from the heat and to prevent the nasty little glass cuts. Open shoes were a safety hazard, as was long, untied hair.

After all these years, I still have trouble explaining what a Christmas ornament clipper is. It was an odd job, but all in all a great learning experience. I developed an appreciation for hard but honest work, an education in teamwork, and a good idea of how I didn’t want to spend my life.

As one of my first stabs at employment, it was an excellent teacher. There are things I learned on the line that have stayed with me through the years, plus the added benefit of having a great odd job story. Seriously. I once sat around a dinner table where the topic of discussion was weird jobs. I was unanimously voted the winner.

Each and every job gives us an education in something, if we’re open to it. Whatever job you doing at the moment, make it a point to find that something.

More than 30 years have passed and I have another job that’s hard to explain. But that’s for another day.

Photo: http://www.sxc.hu/photo/1106758

Worried about health care reform and how it will affect you and your family? Stop falling for the hype and learn the facts.

FactCheck.org is a a nonpartisan, nonprofit “consumer advocate” for voters that aims to reduce the level of deception and confusion in U.S. politics. You can learn about FactCheck.org and it’s mission by reading its “about” page.

Get the real story behind those chain emails and partisan television hosts.

From FactCheck.org:
CPR Administers Bad Facts, Again

The group says premiums could nearly double for those who buy their own insurance. Experts we consulted disagree.

The latest ad from the group Conservatives for Patients’ Rights claims that “new rules could hike your health insurance premiums 95 percent.” That’s misleading. The claim in the ad refers to only 5 percent of Americans who have health insurance – those who buy it on their own. The claim comes from an analysis by a group that advocates for …

Surgery for Seniors vs. Abortions?

Family Research Council says abortions will trump care for the elderly in public plan.

A new TV ad sponsored by an anti-abortion group shows a white-haired man fretting that under a federal health plan, “They won’t pay for my surgery, but we’re forced to pay for abortions.”

“Will this be our future?” the ad asks, merging the fears of seniors …

False Euthanasia Claims

The claim that the House health care bill pushes suicide is nonsense.

On former Sen. Fred Thompson’s radio show, former lieutenant governor of New York Betsy McCaughey said that the House’s proposed health care bill contained a provision that would institute mandatory counseling sessions telling seniors how “to do what’s in society’s best interest … and cut your life short.” House Minority Leader John Boehner made a slightly more measured …

Obama’s Health Care News Conference

Facts vs. Obama

President Obama tried to sell his health care overhaul in prime time, mangling some facts in the process. He also strained to make the job sound easier to pay for than experts predict. Obama promised once again that a health care overhaul “will be paid for.” But congressional budget experts say …

Canadian Straw Man

More ads claim that Congress is pushing a Canadian-style health care bill.

Two ads from related independent groups make claims about an overhaul of the health care system, saying Congress wants a government-run health care system. One ad claims that “Washington wants to bring Canadian-style health care to the U.S.” But the health care bills moving through Congress don’t call for a single-payer system like Canada’s …