Posting On Her Blog Took All the Strength She Had

A very special lady is near death.  Her name is Brooke.  She has M.E. (myalgic encephalomyelitis).  When she knew she was going to die from this disease, she decided, at the beginning of this year, to document her experience in a new blog titled, “Documenting M.E.”

It has been quite an experience to read her posts.  They took all the sparse strength she had.  Her Mom supported her decision to do this.  She no longer has the strength to post on her blog, but her Mom has promised to alert her followers as to her condition, or death.

A very brave and courageous young woman.

Here is an excerpt from one of her early posts, in which she describes the difference between M.E. and CFS (Chronic Fatigue Syndrome) and how the two became mistakenly intertwined.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Soon after, the US formed a committee to discuss the illness that caused the outbreak. There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.

However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO recognized illness). Also note that CFS is a syndrome, meaning a collection of similar symptoms, as opposed to a specific disease process. It is not and was never intended to be seen or treated as one specific illness. For a doctor to look at someone and say “You have CFS, and there is no treatment for it” is wrong. You cannot treat CFS because it is not a single illness, but a whole collection of illnesses not yet diagnosed in the people carrying the label. Think of all the illnesses out there that cause some level of fatigue. People from all of those illnesses are being misdiagnosed with CFS every day. This is why researching CFS is a waste of money. You cannot define it or find a single cause or treatment for it because there is no single “it” to research. This is CFS. “It” is fatigue from every cause under the sun, not yet diagnosed, often because doctors are under pressure not to order the expensive tests necessary to find each person’s illness.

ME, on the other hand, is a distinct, clearly diagnosable neurological illness, similar to MS (for a list of similarities between the two, click here). It is not a diagnosis of exclusion like CFS (ie, “you can only have this if nothing else explains your symptoms”). Just like other neurological diseases, it is possible to have both ME and other illnesses, even those with similar symptoms, as long as you test positive for all conditions present. And yes, there are specific tests which can diagnose ME with a high degree of accuracy – higher, in fact, than for many other neurological illnesses, such as MS. Furthermore, studies have shown that less than 1 in 10 people diagnosed with CFS actually have ME. That means 90% of CFS patients have something completely different from ME. This makes combining the two terms not only highly inaccurate, but also extremely harmful to both patient groups involved. By taking media attention and the precious few research dollars intended for ME and spending it instead on CFS, it leaves those of us living with this horrendous disease with literally no voice and no hope for a better future. All our research dollars are being spent on people who don’t even have our disease! What hope for a better future does that leave us? What hope for a cure or decrease in our suffering could we possibly have when researchers aren’t researching our disease at all, using our valuable resources instead to chase the mirage of conditions included under the CFS umbrella?

For CFS patients, linking their illness to one they do not have keeps them from finding out the true cause of their symptoms. Most fatigue producing illnesses have at least some treatment available. CFS patients are being denied appropriate treatment by doctors who are content leaving their patients with a label which basically says “I don’t know what’s wrong with you, and I’m not going to search any further.” One study found that a whopping 30% of individuals suffering from Major Depression are misdiagnosed with CFS. 30%!!! That’s unforgivable! Especially considering Major Depression is a highly treatable condition. There have also been people with cancer, MS, Lupus, Lyme disease, AIDS, and many more diagnoses, all misdiagnosed with CFS and left to suffer (and many times, worsen) on their own. If you are living with a diagnosis of CFS, I cannot urge you strongly enough to keep pushing for the real answer behind your symptoms. Keep seeing doctors until you find one as determined as you are to find your true diagnosis. Don’t give up! You’ll never find out what treatments are available to you until you first discover what is truly behind your symptoms. Do not, by any means, accept the non-answer of CFS. Every diagnosis of CFS is a misdiagnosis.

If you think you might have true ME, I recommend using the International Consensus Criteria to make that determination. It was developed and unanimously approved by many of the world’s top ME experts, and is the best tool I have found for separating true ME from other stuff. If you’d like to know more about what specific tests can be used to give a concrete diagnosis of ME, check out the page “ME tests.” If you’d like to read more about the difference between ME and CFS, as well as the politics which led to the current mess we are in, I highly recommend reading “The Misdiagnosis of CFS.” I’ll write more about what, specifically, ME is in a later post, but if you want to get a head start, I recommend visiting The Hummingbirds’ Foundation for ME, which is one of the very few websites with accurate information about this disease.

Thank you to A Rainbow at Night for bringing us up to date on Brooke’s condition in her final stages of the horrendous disease, M.E.

Message to My Daughter

 

Never angry.  Only filled with love for you, my honey.

If it were in my power, I’d make changes in your life that would wipe away all the troubles.  Like a magician waving his magic wand.  And POOF!  All would be sunny and bright again.

🙂

Widowhood: Staying Emotionally Healthy

So, here I am, a second-time widow.  It’s been a year and a half.  Has it been that long a passage of time?

Time doesn’t heal; it only smooths out the scars just a little.  If someone tells you “time heals,” they haven’t experienced the loss.  And we have to move forward.  Keeping time in place, like a soldier’s cadence:  left, right; left, right, is not emotionally healthy.  I am not one to sulk, cry, despair or pull out my hair figuratively.  I am still alive!  That, in itself, is cause to be happy – to celebrate.  Well, maybe celebrate is too strong a word right now.

I am very much alone when Bob’s not here to speak to, laugh with, discuss current events in our nation and in the world at large, share a TV program, laugh at the funny sitcoms, scream and shout at the TV about the unfairness in the nation and world, reported by newscasters.

He was a very warm, relaxed man, and enjoyed his life with me. We enjoyed each other.  He was a happy man, and it was my pleasure to keep him that way.

Bob was a very relaxed man. He loved to be comfortable. I always teased him that his middle name should be “comfort.”

Geographically, I’m not entirely alone:  my sister lives close by and my daughter lives only 15 minutes away, and my son lives 35 minutes away in the next county.  And my three cats have me laughing or succumbing to their affectionate antics so much of the time.

Bob and I came down to Florida at different times.  He moved from New Jersey a year and a half after his first wife died; I moved from New York about 2 years before, with my first husband, Dan.  Bob and I ended up in the same condo development after losing our spouses, and were forced to accept our station in life:  widowhood.

It was almost like a storybook way in which we met; actually, we didn’t meet in the strict sense.  We were introduced.

I lived in one building; he lived in another.  Condo living suited our single life at the time.

Sunrise Lakes Phase 4 – The Fairways in Sunrise, FL

 

Overlooking lake and golf course.

Bob was retired; I was working full time, and saved my cleaning for the weekend as most people do who work.  I developed the habit of going to the pool on Saturday afternoons.  There were lots of people in and around the pool and I befriended some nice women.  Conversation was struck up and, after a couple of months, they told me about “this nice single man” who lived in their building.  “Would you like to meet him?  We think the two of you would hit it off.”

I turned them down; my widowhood was still too fresh.  I couldn’t think of meeting anyone at that time.  After my refusal, they stopped talking about “him.”

Many months passed and, every so often, they brought up the subject again – I kept refusing.  I couldn’t take them seriously.  But one day, just to shut their mouths finally, I said, “OK.”

So, it was arranged.  I was to be at the pool at my usual time one Saturday, and they convinced Bob to be there, too.  Well, that particular Saturday, I had long phone calls from sister and daughter who were still living in New York, so I was delayed in getting over to the pool.  I was just getting ready to go over to the pool, when the phone rang again.  It was the two women.  “Carol, are you coming?  He’s here!”

“The pool.”

I finally got there, and the introductions took place.  Bob was a nice-looking man and his voice was smoothly masculine – nice to listen to.  The women had arranged the chairs just so:  we were facing each other.  (They were having a blast!)  They made themselves comfortable on their lounges next to the chairs, and we all chatted a bit.  In a couple of minutes, they stood up, held up little brown paper bags, announced they were going into the clubhouse to have their lunch, and left!!

Boy!  Talk about being left in the lurch.  Well, we made the best of it.  The usual chatter.  “Where are you from?  Do you have family?”  Etc.

During the long and enjoyable conversation (more than 2 hours), Bob mentioned that he cooked.  He suggested that he would cook dinner for me sometime(!).  Before I knew what was happening, words tumbled out of my mouth.  “I’m not doing anything this evening.”

He didn’t cook that night, but he did take me out for a nice dinner.  And so it began…

 

 

 

Oops!!

Making mistakes while doing a job can be embarrassing – even cause someone to lose a job.  But, we have to laugh, just the same.

Here’s a good start to the weekend:

How embarrassing for this young woman!

A spelling error!

Now, how would I get the key in there?

I think the teacher didn’t do due diligence in the lessons.

Uh – what if I wanted to close the door?

Must be color blind.

Hmm. Now, let’s see.

 

Patches

Patches is my special, sweet girl. She has 2 pesky brothers that she tries her best to put up with. Please read about her.

Pussy Cats 3

I originally published this post back in 2011.  Am re-posting and have brought it up to date.

My special sweet girl.

Patches is my oldest (11 1/2) and she is very sweet and talks to me all the time.  She is a silver and orange tabby.  She is also one of two Exotics who share our household.  She is doing very well now; although, it wasn’t always that way.

She had a chronic condition called feline lower urinary tract disease(FLUTD), and she hadn’t had a flare-up in a couple of years. Bob and I were so very grateful for that.  She used to be on medication for it and also on special food.  I wasn’t happy about that because the food was not a quality food; it had so much corn and poor protein.

The medication she was on was amitryptiline and it kept her so drugged that she…

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Give Them a New Toy and See What Happens

This is my other blog about my cats. I hope you enjoy.

Pussy Cats 3

What is this strange thing? Do you think it’s safe?

It looks like Rusty is the brave one. He’s always the first to examine anything.

Romeo: “Well, Rusty, what’s your take on it?”

Rusty has to take another look before getting closer. He’s being careful.

Rusty: “It looks OK to me, but I think I’ll wait just a minute longer.”

In the end, none of them went in.  It seems they had a conference, and decided not to venture into the tunnel.  So, it’s on the floor in the patio, awaiting the first cat to play explorer.  Maybe it’s the color red that’s putting them off?  I move it around to try to get them interested, but nothing’s working.  Oh well.  On to the next “adventure.”

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Memories of a Time Past: Part 6

Brooklyn was where I was born and raised, and also where my Mom and Dad were born and raised.  Home was always “Brooklyn.”  I was never a sports fan per se, but the Brooklyn Dodgers was “my” team.

Mom and Dad were married in Brooklyn, and so was I, and also my sister.  When I hear “Brooklyn” mentioned, my ears perk up and I want to know in what context my borough was spoken about.  It’s just the way it is.

I have sweet, loving memories about my Mom’s parents:  Tillie and Louis Blacker.  They were sweet and thoughtful people, and they were always available for family – whatever the reason they were needed, they were there for you.

My Favorite Grandparents

Grandma and Grandpa lived in an apartment house on Nostrand Avenue, between Church Avenue and Linden Boulevard.  Third floor walk-up.  Even though I was a young girl (7 or 8), the apartment didn’t feel that large; although there were 3 bedrooms.  When we came into the apartment from the dark, small stair landing, we walked into a narrow hallway.   There was one bath to the left as you walked into the apartment; a tiny kitchen after that, with a very small table pushed up against the wall with 3 chairs (I remember the chairs creaked when you sat down), and a very dark wood, ornate, old cabinet where Grandma kept some groceries.  She always had a box of Cheerios in that cabinet.  She knew I liked Cheerios.  (Yes, there were Cheerios that long ago!!)

There was a nice-sized living room which shared a wall with the kitchen.  And the master bedroom, about the same size, was next to that.  The 2 other bedrooms to the left of the hall were quite small.  No dining room.  They had a narrow table against the shared kitchen wall in the living room, which pulled out to make a long table when the whole family was over for dinner.  I don’t remember having dinners there, but I’m sure there were.

I remember a big, light wood, old radio standing in the living room.  It actually was a lovely piece of furniture, and Grandpa would sit in his chair with his newspaper, and have the radio on at the same time.  He was comfortable in his chair, and I was comfortable in his lap as he tried to read his paper.

I remember my Great-grandmother (Grandpa’s mother) lived there.  She had the small room to the right of the hallway as you walked into the apartment, and past that, my mother’s youngest sister had her bedroom.  Great-grandmother was a kindly lady.  She was suffering from old age, and couldn’t really leave her room.  My Mom would attend to some of her needs when we visited during the day.  I remember Great-grandmother (I called her Baba) would sit by the window whenever we were there.  She loved my Mom and was so grateful when my Mom tweezed her brows and trimmed her facial hairs.  She died when I was nine years old.

There weren’t any phones in the building at that time.  But, there was a communication system, nonetheless!  There was a candy/luncheonette/newspaper/magazine/cigarettes and cigars store downstairs.  The owner was a very nice man, and he had a public phone booth.  He allowed the tenants in the building to give out the phone number so they could communicate with family.  Whenever a call came for Grandma and Grandpa, he would stand outside under the window, and call, “Mrs. Blacker!”  He must have had a loud voice, because even with the windows closed, he was heard.

 

 

 

 

New Video Made By M.E. Patients in the UK: Disease Effects Clearly Described

I found a video made in the UK, with M.E. sufferers making short comments regarding the way they have been “hit” with the disease.  These patients very clearly outline the different ways in which this multi-faceted and multi-symptomed chronic illness manifests itself.

It takes only 4 minutes.  Please view if you have had any questions about how patients are affected by this “invisible” illness.

I am an advocate for M.E. because my daughter is a sufferer, and whenever I come across anything new (to me) about this disease, I need to post that information.

Thank you.

 

M.E. – Myalgic Encephalomyelitis “Canary in a Coal Mine” Report

Documentary Film Program Provides $1.5 MM In Grant Support to Filmmakers in FY2014

 Posted Jul 14, 2014, by Documentary Film Program

The Documentary Film Program’s (DFP) Spring 2014 grants totaled $975,000 awarded to 44 films, including four films from the Documentary Film Initiative in Asia. This total marks an increase from the Fall 2013 funding that totaled $711,500 in grants and awards across all stages of production.

 

The larger number of projects selected for support by Sundance Institute reflects a funding philosophy designed to embrace both existing and emerging mandates. Films selected include both passionate treatments of human rights issues and contemporary social relevance globally, as well as artful or cinematic documentary films that are compelling, creative, and meaningful for the culture at large. This expansive round has called for a greater number of film awards than ever before, in this case 44 films globally.

DEVELOPMENT

Canary in a Coal Mine  (Jennifer Brea, U.S.) and others.

A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.

Watch the trailer for “Canary in a Coal Mine” below:

What is M.E.?  And what is the difference between it and CFS?

It is an injury to the Central Nervous System. usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system.  (Some researchers believe that M.E. is only ever caused by a virus.  Others have commented that the same symptoms can be caused by chemicals.

 

M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.

Prognosis is variable depending on how much and which part of the brain has been damaged.  Complete pre-illness recovery is rare but possible (around 6% of cases.)   Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission.  Most cases stabilize at varying degrees of disability.  Around 30% of cases are progressive and degenerative  and degeneration of end organs may result in death. (One quote of early death rate in M.E. is 10%.  This figure includes suicides.  Early death from cardiac pathology is put at 2%.  Pancreatic failure can also contribute to early death^.  Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to certain foods, smells, alcohol, chemicals, light, noise and medicines.

M.E. is not the same as CFS (Chronic Fatigue Syndrome).  This is because there are currently 10 different interpretative criteria for CFS, some with a psychiatric and others with an immunological specification.  If the CFS criteria used involves damage to the Central Nervous System, then it could well be the same disease as M.E.  Other CFS criteria used focus on patients whose fatigue could be of psychiatric origin and this is not M.E.

The name M.E. has a long medical history of being a neurological disease, being classified in neurological textbooks since the 1960s.  It is a recognized disease by the WHO (World Health Organization) for at least 3 decades.

The name CFS was created in the 1980s with almost exclusive emphasis on the word ‘fatigue’, leaving out much pathology (structural evidence of disease) and previous physical M.E. research findings.  The vagueness of the term CFS is thus attractive to insurance companies, drug companies promoting anti-depressants for fatigue and government departments intent on saving money through benefits, support and research programs.  Any illness which has guidelines excluding pathology tends to not be taken seriously by medical and governmental authorities.

Therefore, the term CFS can be harmful as a label to M.E. sufferers because it can exclude pathology. Sometimes, however, researchers and medical staff use the term CFS to mean M.E.  So the situation is unacceptably confusing.  M.E. is a more specific name implying the pathology which has been found.

 

 

 

A Day For Remembering

Yesterday, I was with my daughter in Kendall FL.  She had a medical appointment, so it was a combo of medical and mother-daughter experience.  Love being with her – she’s a special person.  Everyone who has her acquaintance is aware of how special she is.  In many ways, she takes after her father.

We had an early lunch in the Bahama Breeze restaurant.  It was a lovely, relaxing luncheon.  The menu was varied and eclectic, and we settled on a salmon platter.  Karen, our waitress, made the time a delight, as well as the good food.

We wanted to sit on the patio, but roof work was being done, so we had to opt for indoors.

Just before leaving to get to the medical appointment, we heard a song being played on their audio system that was very familiar to me (Yellow Bird).  It brought back memories of many years ago – to be exact, a couple of weeks in the summer of 1963, spent in Flemington NJ, when my daughter (almost 3 at the time) and son were very young.

The company that my husband, Danny, worked for, owned a horse farm where standardbred horses were raised for the races.  A free vacation was offered the employees at the ranch.  The accommodations were very comfortable, and we were given a lovely 2-bedroom space (was just like a high-class motel).  Included were meals, a lovely pool, and the ability to make our own entertainment.  There was a stage and all the necessary accoutrements for putting on a show.

There were quaint and popular shops in town, where everyone could meander and buy some glassware and dishes at the Flemington Glass Factory, also referred to as “10-R-10,”

 

or buy fur coats and fur jackets at Flemington Furs (this was much before we became aware of the killing of wild animals indiscriminately for their fur and carried on for the greed of poachers due to demand for fur clothing).

Flemington was an historic town, and we enjoyed many hours there, meandering amongst the many shops and little museums.

My son was 6 months old, and one day, at mealtime, he refused his bottle, and only wanted to drink from a cup or glass.  I can picture in my mind:  he was sitting in the stroller next to our lunch table.  I had fed him before we sat down at the table, and saved his milk bottle so he could be occupied with that while the rest of us ate.  He was way ahead of his time!  Must have been something in the country environment – clean air, farm smells and horse odors evidently agreed with him!

One of the husbands (employee) who was also vacationing with his family, sang and played the guitar.  My Danny played the harmonica (he was very talented).  The two of them got together several times, rehearsing a popular tune of the time: “Yellow Bird.”

So, when I heard that song coming over the audio system in the Bahama Breeze restaurant, all those memories came flooding back.

And, it is fitting that I write this post today.  I think of my Danny every day, even though it’s been many years since he died, and I married again and lost my Bob a year and a half ago.  Love never leaves your heart.

It is fitting that I write this post today, because July 17th was Danny’s birthday.  Happy Birthday, love.  Rest in peace.

 

[images from bingdotcom]