MS Maze

Multiple sclerosis. Is that the disease that puts you in a wheelchair or leads to a nursing home? Montel Williams… Richard Pryor… Annette Funicello… all names associated with MS, and isn’t there a mountain climber or two that have it?

Confused? You are not alone. That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.

Throughout the month of March, I will offer glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month.

A Diagnosis Odyssey

It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.

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Multiple Sclerosis Awareness Month: A Diagnosis Odyssey

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Having trouble getting health insurance? Maybe you can get on your pet’s insurance plan. Probably not, but that didn’t stop Hal Ziegler from making the call anyway, after receiving the infamous rate increase letter from Anthem Blue Cross.

Terri Carlson finds herself in a similar situation. Her attempt at a solution was to advertise for a husband with health insurance benefits. It’s a fairly drastic response, but desperate times call for desperate measures.

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Pet Insurance for People..Marriage for Healthcare..How Far Would You Go?

Photo: http://www.sxc.hu/photo/911229

Do you walk on eggshells around people with chronic illness or disabilities? If so, you are not alone.

Maybe you’re a little uncomfortable — you don’t know quite what to say and don’t want to stick your foot in your mouth. You want to ask questions but don’t want to pry. In our “politically correct” world, eggshells are all over the place.

Most literature about chronic illness informs us that stress can aggravate symptoms and cause relapses, and a lot of us can attest to that fact. Avoiding undue stress is a positive thing. However, we cannot divorce ourselves from planet earth and the reality of every day life. Taking the concept of avoiding stress too far, especially within the family, can result in pent-up resentment by all concerned.

Most people who have a chronic illness or disability are functioning members of society and integral members of family life. Rather than avoiding that person or avoiding the problem altogether, why not approach them as you would anybody else?

Adults with chronic illness or disabilities want… and need… to be included in important issues, even potentially negative ones.

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Hiding From Our Disabled

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

February 14 is Valentine’s Day, a day set aside to celebrate love and romance. It is not usually a day when we want to ponder our own mortality, but it also happens to be National Organ Donor Day.

There is something we can do right now to help others after we’ve gone. We can offer the precious gift of life through organ donation.

The need is great: As of February 1, 2010, there were 105,525 people waiting for an organ for transplant, and approximately 35,000 children and adults in our country have life-threatening blood diseases that could be treated by a marrow/blood stem cell or cord blood transplant.

Please… read this post in its entirety and follow the links to give the gift of life.

Valentine’s Day Gift of Life

Photo: OrganDonor.gov

In the midst of a 30-inch snowstorm, I felt a mixture of unearned guilt and helplessness. From the kitchen window I peeked out at my husband every so often as he labored in the wintery whiteness.

Glancing around, I observed an elderly neighbor to one side and young children on the other, all tackling the mountains white stuff with a vengeance. Meanwhile, I was warm and dry, but not completely unproductive. I tackled a few chores that needed attention around the house, reminding myself that I, too, was making a contribution. But the question remained… why did he lie to me?

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Lie For Me

photo copyright: WebCamp One LLC

Alone in her Birmingham, England home, a woman stirs a half teaspoon of cannabis into her hot tea. By seeking relief from pain and spasms caused by multiple sclerosis in this way she is, in the eyes of the law, a criminal.

She doesn’t take this action lightly and is not out for a recreational high. She simply wants a reprieve from the relentless pain that plagues her and, after sipping her tea, generally experiences about three hours of relief. Only those who live in chronic pain can fully understand her anguish.

Speaking of her predicament she says, “I want politicians to be nice to me… I’m sick.” One cannot put it more simply than that.

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A Toke a Day Keeps the Doctor Away

One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.

The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.

It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.

We hear a lot about…

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Sharing a Life Altered by Multiple Sclerosis

Photo: http://www.sxc.hu/photo/733600

Elder abuse is a growing concern these days, as awareness about the physical, emotional and financial abuse of elders has steadily increased since the 1970’s. Many cases of elder abuse go unreported every year, as some aged individuals are either embarrassed by or in denial of the abuse they are experiencing. For this reason, it is imperative that society as a whole begins to look out for our elders and watch for signs that abuse is taking place behind closed doors. The best way to effectively keep a watchful eye on our elder population is to educate ourselves on the signs and symptoms of elder abuse, as it relates to both the perpetrators and the victims of the crime.

Perpetrators

Research shows that the highest statistically proven perpetrator population in almost all elder abuse cases is found in Caucasian males, ages 41 through 59. The one exception to this rule is in cases of neglect, where Caucasian females were slightly more represented than males (according to the National Elder Abuse Incidence Study). While there are many good caregivers that fit this target perpetrator profile and many abusive caregivers that fall outside of this profile, you would be wise to keep an extra eye on caregivers that fit this description.

In addition, you would be wise to watch out for signs that caregivers (whether they be family members of the aged or hired staff at treatment facilities) are struggling with any obvious addictions, which would make them more likely to take advantage of elders in order to feed their habit.

Victims

When the aged are experiencing abuse behind closed doors, many will exhibit the classic symptoms of withdrawal, moodiness or self harm. It should be noted that the presence of these symptoms does not necessarily mean that elders are experiencing abuse, as people sometimes exhibit these behaviours due to fears associated with growing old. However, these symptoms should serve as red flags for concerned friends of the elderly and should prompt a deeper examination of the quality of care they are receiving. Check their medical alert bracelets for pre-existing conditions.

In addition, if you have an aged family member that has recently entered into a new romantic relationship, you should take a closer look to ensure that they are not falling prey to a “sweetheart scam”. Predators sometimes target lonely, aging populations in order to earn their trust and then steal large amounts of money and possessions from them. While genuine romantic relationships can certainly begin for elders late in life, be sure to look out for your elders by getting to know their love interests on a deeper level in order to ensure that their motives for romance are pure.

This is a “sponsored post.” The company who wrote and sponsored it compensated me via a cash payment, gift, or something else of value to post it. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

You have multiple sclerosis and I have multiple sclerosis, but I have not walked in your shoes. People with MS do not think or act more alike than any other segment of the population. We are a diverse and complex group of individuals and despite all we have in common, our experiences with MS are uniquely our own.

One thing we do all have in common is the need to make decisions. How and why we arrive at these decisions is complicated and personal. Our particular symptoms, age, other medical conditions, family, medical advice, financial status — and yes, our health care coverage — are just a few of the issues we each have to take into consideration.

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MS = Multiple Sclerosis + Mutual Support

Photo: http://www.sxc.hu/photo/1029084

You have been diagnosed with a chronic illness. Perhaps the diagnosis was months, or even years in the making. Tremendous relief at finding the answer is followed by a myriad of questions. One of the first is who should be told… and when… and how much?

This is an intensely personal decision, and one which should not be rushed.

Immediate family members who share a home with you… spouse, children, parents… should probably be told. They will be involved in the day-to-day issues as they arise and may be called upon to assist, or at least to provide emotional support.

Reactions to your diagnosis will be varied and unpredictable…

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Life with Chronic Illness: Who to Tell, When, and How Much

Photo: http://www.sxc.hu/photo/1178168

’Tis the season for celebration… and angst; for hustle and bustle… and unrealistic expectations.

Whatever you do, don’t let Norman Rockwell’s homey visions and Martha Stewart’s superior homemaking be the catalyst for your own anxiety. Your Christmas holiday may not rival that of a sentimental old black and white movie, but that wasn’t real life anyway.

One is hard-pressed to find the silver lining in the economic decline over the past several years, but there is more emphasis on home and hearth this Christmas and less emphasis on commercial goods as the fulfillment of holiday wishes. That’s a very good thing.

If you live life with a chronic illness, tackling the holiday “to do” list can be overwhelming. The first item on your “to do” list should be to cull the “to do” list. Ask yourself which items are truly necessary and which can be eliminated.

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Healthy Holiday Expectations: A How To Guide

Photo: http://www.sxc.hu/photo/1078098

Sometimes the positive attitude patrol functions as a guilt trip in disguise. Are they really promoting a positive attitude in the best interest of someone else… or is it a lopsided attempt to protect themselves from having to deal with someone else’s disease or disability?

Keep up the positive attitude because I can’t deal with your problems.

Do people with health concerns have a responsibility to people around them… to protect them from dealing with the uncomfortable?

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When Positive Attitude Goes Negative

Photo Credit: http://www.sxc.hu/photo/1108245

In the ongoing debate about health care reform, we often speak about access to health care, but there is another element to the debate that is equally important — what kind of care are you getting?

Health care is built upon the doctor/patient relationship, but that crucial relationship has changed drastically over the last decade. Without that fundamental building block, the practice of medicine suffers greatly.

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What happened to patient-centered, compassionate medicine?

Photo: U.S. National Institutes of Health

“If you’re going to use a cane, use a CANE!” I heeded that advice and never regretted it.

I was in my early 40s and my multiple sclerosis was as yet undiagnosed, but walking was becoming a problem, especially in public settings. My awkward gait and lack of confidence made me feel rather conspicuous, but I was not thrilled about the prospect of using a cane at my age.

We’d picked up a cheap metal cane at a drugstore for a trial run, soon realizing that I would actually look and feel more confident and natural with a cane than without. But that cheap metal cane was not exactly the image I wanted to project.

So the online search for a more presentable cane began. Still somewhat self-conscious about the prospect, I sought out canes that would blend into the scenery. I thought that my cane should be useful, but not particularly noticeable. I wanted a boring, fade-into-the-background look.

That’s when my husband stepped in. “You’re looking at this thing all wrong. If you’re going to use a cane, use a CANE! Don’t be embarrassed by it… make a statement with it. Own it.” Wise man, my husband.

That’s how I ended up at a website called Fashionable Walking Canes. The assortment of walking canes and walking sticks for men and women evoke the style of a bygone era, the cane not only a mobility aid, but a fashion statement.

My search for the perfect ladies’ cane ended when I spotted a red paisley adjustable folding cane. That’s right — red paisley. I knew I could forget about fading into the background with that one, but like the man said, “get a CANE!”

That cane is still my favorite, although I’ve since added others to my collection. And I do get noticed — not because poor pitiful me has to use a cane, but because people stop to compliment me and want to know where they can get one.

Visit the Fashionable Walking Canes website: www.fashionablecanes.com or on Facebook.

Disclosure: This is a compensated post — but a 100 percent true story.

Is it “disabled” or “person with disability?” Inclusive language experts say it’s the latter. Ah, but take a look around the web at the blogs of persons with disabilities, and you’ll come across badges and banners that read, “Disabled and Proud,” as well as many variations on such terminology, depending upon the context.

In researching acceptable terms, I came across the advice to refer to “people without disabilities” rather than “able-bodied” people. Well, I’m certainly guilty of incorrectness on that one. “People without disabilities” strikes me as awkward.

“Partially sighted” rather than “partially blind” does accentuate the positive, and “Handicapped Parking” is making the transition to “Disabled Parking.” Lots of food for thought here, but there are many shades of gray.

If you are a person living with chronic illness or disability, please read this post in its entirety — your opinions on this would be greatly appreciated:

The Art of Inclusive Language for Chronic Illness and Disability

Photo: http://www.sxc.hu/photo/624069