Monthly Archives: September 2016

#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

Protest Coverage

 

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I Was A Homeless Person

…for three days in 1990!

Today (September 28th, 2016) is the 26th anniversary of my official residency as a Floridian.  Three days before, on September 25th, 1990, I gave up my citizenship as a legal resident of the State of New York, as I signed on the dotted line to sell my house.

It was a big, new adventure; one which held an unknown future for my then husband, Dan, myself and his Mom.  That’s what I called it, as we drove into Delaware on US I-95.  “A new adventure,” I announced to Mom.  I felt excited and positive.  Little did I know, as we settled into our first motel stay and I got my first mosquito bites which were of major proportions, what was in store for our future.

We were a caravan of two cars and were “attached” by a CB system that Dan rigged up.  It was very basic, but served the purpose in notifying when we intended to stop at a service area.  Dan led the way in his car.

I followed, with Mom in my back seat.  She was 86, full of trepidation; full of trepidation, because we couldn’t leave her in Long Beach.  She had no one there on whom she could depend if she needed help.  Friends had moved away to be near their kids, or died.  Nothing was left there for her.  She really didn’t want to leave, but there was no other choice.

Mom was very comfortable what with pillows and blanket to insure her comfort. She was of small stature and she fit right in on the bench seat of my 1986 Ford Granada – turbo engine, of course.  Ha ha.

We were making very good time.  I had arranged for motel stops and the next one was located in Georgia.  When we got there, it was only  3:00pm, and we decided that it was too early and had the manager call ahead to another one in St. Augustine, Florida.

We lost all the time we made before that motel stop in Georgia.  We got caught up in the Jacksonville rush hour traffic.  What a bummer!

Mom was very tired after the two days’ travel, so she just wanted to rest when we arrived in St. Augustine.  We decided that we would bring her back some food, which we did after enjoying our supper in a casual restaurant.

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We had visited that city previously, some years before, and found ourselves wandering about, and visited some of our favorite places.  It is such a quaint, old city, and it was a pleasure to stretch our legs and feet over cobble stones!

After an exhausted sleep in St. Augustine, and after five more hours of driving, we finally arrived at our first destination at Forest Trace in Broward county.  It had opened only a year before; it was beautiful (we had visited it a couple of months earlier).  Mom was settled in at her apartment:  she was warmly welcomed by the staff, and made to feel at ease.  Her rented furniture was in place, so she was able to rest after the long trip.

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At the same time we had made arrangements for Mom’s apartment, we made arrangements for an apartment in a nearby apartment complex for ourselves.  Our rented furniture had been delivered in our apartment, overseen by the complex office manager.

All our furniture and Mom’s were sold in New York.  This was really a new start for us all!

It was an odd feeling I had, knowing I didn’t have a place where I could call “home.”  I had a destination, but those three days had me feeling “displaced.”  And, in another way, it was a free feeling because during those days, I had no responsibilities.  No tethers.  It was peculiar, but, yes, exciting.

Everything went smoothly.  That was a good feeling.  The next day, we went to the court house, and signed a “Declaration of Domicile.”  We were no longer HOMELESS!

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Who Has A Lock On Patriotism?

I may not personally use some language used in his post, but Chuq makes strong points about Patriotism with which I fully agree.

In Saner Thought

My Sunday begins……I would like to post on a subject that is all the rage right now.

Like so many elections before….we have a wealth of nose pickers that think that unless you support their candidate then you are not patriotic.  These people always describe themselves as “true American patriots”.  Apparently if you are a “true American patriot” then you must hate brown skin people, believe that you have a lock on religion and must support a bigoted asshole like Trump.  And that if you are a Left leaning individual then you cannot be called a patriot…..and are a sub-par intellect.

“You’re not supposed to be so blind with patriotism that you can’t face reality. Wrong is wrong, no matter who says it.”

“Guard against the postures of pretended patriotism”…..George Washington  1796

Ever noticed that the “true American patriot” never served in the military or served but not in a…

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Severe ME: ‘Took nearly 40 years to be diagnosed’

The story about an anonymous Australian person who has suffered with ME (Myalgic Encephalomyelitis) since childhood, is an example of how other patients around the world try to cope with this debilitating and misunderstood disease.

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ME Australia

by Sasha Nimmo

Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME.

Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. This patient fears further mistreatment so asked to maintain anonymity.

Above is a picture of Basil, an affectionate miniature fox terrier and company during difficult times.

Even after so many decades of illness, this patient still holds hope in medical research and participates in studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, one of the few places studying severe ME.

This patient shares their story with us.

What was your life like before you became ill?
For me, it is not a straight forward answer as I have had mild ME since I was…

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The Screeching Wetlands Bird: Limpkin

 

No, it doesn’t limp.  I don’t know who might have named this bird; however, it’s in my handbook of favorite Florida birds, so I guess that is its official name.

All my neighbors, including myself, call it the “screecher.”  That’s what it does:  screech.  It’s not a pleasant sound to wake up to in the early morning.  What really scares the daylights out of you is when you’re outside and one of these 2-feet-tall birds flies over your head and screeches at you and nearly gives you a heart attack!  That isn’t a far-fetched notion:  most of my neighbors are “way up there” senior citizens.

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Patches Loves Her Blankie

Didn’t we all have our “blankie”?

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She knows what the “good life” is all about!! 🙂  This is one of her two favorite places.

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What Happened To The Sun?

It is the rainy season here in South Florida, and many mornings are dark and void of sun.

Last week, it was raining – HARD.  A long time ago, someone once said, “This is weather that only the ducks will enjoy.”

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Patches Is Practising For Her Modeling Career

Patches is always surprising me. She has lots of hidden talents.

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Imagine Patches on a luxurious chaise.

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Lip-Tongue-Smackin’ Good!!

You’re doing a great job, pussycats!

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It looks like Rusty and Patches know how to enjoy their food!!

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Great Blue Heron Ambulation

 

I was fortunate to catch this gangling Great Blue outside my bedroom window one morning.  They are named appropriately, for sure.

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