MS Connection Blog

The Unspeakable Bits from a Life with MS: Conspiracy Theories

In the profit-driven, 24/7 news cycle of a world in which we live, it’s amazing the number of outrageous theories about multiple sclerosis one hears.

I believe that the internet has become the most powerful tool people living with MS have at our disposal. The access it allows us to previously hard to find research, historical data and others living with the disease around the globe is an informed patient’s dream. To paraphrase Newton’s Third Law of Motion, however: For every action there is an equal and opposite reaction...

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What if I can't work?

From the very beginning of the Unspeakable Bits blog, I have written from the premise that information is the counter to fear. I believe that wholeheartedly, and while it is sometimes difficult to face ugly facts about living with multiple sclerosis, I’d rather look at them than hide from them.

One of the most difficult aspects of living with MS comes if we can no longer work due to our disease.
There are loads of resources out there to help us decide when to disclose (or not). The government especially wants to help us stay employed. But even with rehabilitation counseling, we may get to a place where we just cannot work any longer. Because society often seems to value what we do more than who we are, this point in one’s life can be particularly difficult...
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Damaged Goods

The approaching holidays can be a bright and wonderful time of the year. It can also lead to some tough times for people living with MS. While friends and family gather to bask in the warmth of the season, we can sometimes feel “less-than.”

No one would want a gift from the damaged and discounted goods table; why, goes the faulty logic, would someone want us?
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The MS Know-It-All

Have you ever run across the “Know-It-All”? You know, the guy or gal who has done, seen, tasted, smelled, tried, succeeded at (hardly ever failed – at anything), read, studied and/or experienced whatever topic might be at hand? And have you noticed that these KIAs (might as well give them a name, right?) have opinions about a subject that are almost always diametrically opposite yours on just about everything? It seems sometimes that these KIAs can only feel themselves to be right by making the rest of us feel like we are somehow wrong.

How about the MS KIA?
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Why Can’t We All Just Get Along?

The Unspeakable Bits From a Life With MS

I believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment.

Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!
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Death from ‘Complications’ of Multiple Sclerosis: The Unspeakable Bits from a Life With MS

When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.

Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.”  When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
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Medical Marijuana for MS

The Unspeakable Bits; From a Life with MS

4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
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Why don’t they believe us?

After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.

Why then do so many people feel like they have the right to question us?
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