Tuesday, November 12, 2013

The 100th Post! Diagnosis Plus Three Years! MS - Year 5! Exclamation Points!

So here we are, 100 posts into the weird world of bipolar disorder and multiple sclerosis/demylination disorder.  I hope it has at least been entertaining for you, as it has been for me occasionally.

So it is now award time...Yes, it is time for the Tommies!


Made from pieces I picked up at Legoland in Disney World (if they are on the ground for five minutes, and no kids pick them up, fair game).

The best way to know if you're bipolar:

Last night you understood the secrets to the universe and this
morning you are contemplating whether the jam goes on top of the
peanut butter or under it.
A tip of the cap tohttp://manicdepressivetalk.com
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The best line about MS:
what kind of a medical condition would call its most annoying symptom a hug?
A tip of the cap to: http://yvonnedesousa.com/
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The dumbest thing about research:

The Multiple Sclerosis Foundation
The Multiple Sclerosis Association of America
The Multiple Sclerosis Society

They all say the same things, they all want money for research, the money goes to massive pharmaceutical companies that eat cash like a zombie would gnaw your arm off.  Then they want another leg. And they want you to walk, bike, run, push a wheelchair, slide in mud, and get as many of your family and friends to participate as possible and we want their names so we can hit them up for more. A cure is right around the corner. Yep.  Support groups? sure, I go, but no one's cured yet, and all are brave souls to share pain. Stable? Sure, if you have relapsing remitting - I know it still is a tough road - and there are always surprises on the road - you may go a long time between flare-ups.

How about the three groups get together and figure something out? Like Republicans and Democrats. Maybe a concerted effort will speed up treatments and a cure.  It won't come for me, or many others with MS around now, much of a shot for that. But you live in hope, and carry on with how you're doing TODAY.

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What have I learned? People are very nice. People are selfish.  Patience is the number one virtue, especially when your wife has a hearing problem. People like to hear your stories, as long as they aren't boring or have to do with the speaker. There are a lot of other people worse off than you.  Enjoy every sandwich.  Disney was right - the world is a carousel of color.  Listen.  Ask for help when you need it, even though you won't. Be prepared. You will forget things. It's okay, your brain is actually trying to rearrange things to keep functioning.  Keep being challenged, whether reading or writing a book.  Everything you did before were lessons to prepare you for this.  I know. I watched my father go through it, and I think I know now what to do and what not to do. Have faith in Someone or Something. The flowers will grow anyway.  That's their job.  People will look at you funny if you park in a handicapped spot, but don't at least drag your foot.  "Nothing wrong with you. Lighten up!"

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Some days are better than others, but that's probably true for every sentient being on the planet.  There's not much pain, the fatigue is less, but when its ready to come back, it's like a dynamo. I don't really get overly manic or really down.

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I've always noted the beginnings of MS from January 2010, though I knew in the months previous that's something was off. The semi-official diagnosis from the Troy Neurologists was no surprise, though then being told that I did not have lesions on my spine late last year, meant no actual MS, just Demylination Disorder.  Add that to the bipolar disorder, and I'm double disordered.

But I am having a good time. Naps count.

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I admire the courage I see in people with MS in all its form. Gives me a special appreciation for the Wounded Warriors coming home from George W.'s wars.  And reading what it was like for the Civil War soldiers on both sides, when suffering was almost a requirement, and a slow death the most likely result of anything like a minie ball going through you anywhere.  Mostly from infection.

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January 1, 2014 will start year 5 of MS. For all intents and purposes, I've outlived my father's version of the disease. Yay me.

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To quote the country song: I ain't as good as I once was, but I'm good once as I ever was.  Just make it before seven PM, okay?

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Who are you people who read this thing every week? Tell me sometime.

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I have stories to tell, and much to learn.  John Fogerty gave a great concert Sunday (and if you don't know who John Fogerty is, learn) and the intimate crowd(?) or small group made it more like being at a CCR concert in the early 1970s, like at the RPI Fieldhouse. I want to soak up so much and understand what is possible, because in some universe or another, it is.  Who knows? maybe next time I'll end up there.  Maybe that's the universe where the Mets win every year.

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I've heard this from the New York Mets top brass for years - There is a Plan.

"There's reasons for that
There's reasons for this
I can't think of any right now
But I know they exist"   - Bob Dylan "Hell is my wife's hometown"

You decide.

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Thank you for participating even with just your eyes scanning the words.


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OK, to be fair, this is from the local MS Society....

As a result of your fundraising efforts, we've provided financial assistance for air conditioners, ramps, home modifications, medical services and more for nearly 200 individuals affected by MS. We were also able to offer a variety of support options, along with the program “Knowledge is Power” to nearly 80 individuals newly diagnosed with MS.

Well played, MS Society....





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