About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, October 29, 2012

P*ssed OFF!!!!

Edward Munch's "The Scream": Note the two men in the background: the two disinterested parties!

Today I happened upon yet another article about CFS and/or vs. ME and let me tell you it hurt - badly.  I am so damn tired of all the psycho-babble I've had to put up with for 38 years and frankly I'm p*ssed.  However, if I'm truly honest, I'm mostly hurt.  It just feels more demeaning to admit that I'm hurt, since it takes away my power - or what's left of it, that is -it makes me feel vulnerable and one thing I've never been is "vulnerable." 

I'm a strong woman whose family survived Lenin, Stalin and Hitler.  Try living with those genes and DNA!  For background, just to show you what "we" are made  of, in 1932 when 10 million Ukrainians died from the Stalin-induced famine, our family made it.  So, you think a bit of psychology is going to make me sick?  Our huge amount of hectares gifted by Catherine the Great was taken away - for the infamous "collective farms," or "kolkhozy" - and the family was shipped in cattle cars to Siberia, but we endured.  

Given this sort of background, what some sort of unhappiness is going to ruin my health?  My mom had a swollen belly from starvation for a year, suffered malaria for seven years, worked in a German forced labor (slave labor) camp during the end of WW ll and some sort of psychology/psychiatry is going to hurt my health?  I was raised on daily freshly squeezed carrot juice each morning (don't ask!), hot porridge, fresh soup, meat and veggies every single day until I left for college, but for two wonderful years in boarding schools, and I'm going to get sick because of some stupid psychological reasons?  We had a strong community.  I went to Russian Orthodox camp each year for the experience and the wonderful Catskills Mountains.

I hate it when the whole psycho-babble is brought out.  Nothing, and I mean NOTHING, could be further from the truth.

When I got sick in 1975, I was very thin, too thin.  I also had very little money so I finished my BA in English literature in three years and one quarter, quite the feat, but because we paid by the quarter, not the credit hour, I felt I had to do it that way.  Almost everyone of my fellow campers were high achievers, typical type-A personalities who ended up working prestigious jobs such as translators for the joint US/USSR space programs, top translators for US presidents, professors at ivy league schools.

I took such heavy loads that I had to get special permission from the dean.  I also had to take all heavy reading and writing courses towards that end because I started out as a math major and had other courses to make up for that deficit as I finished my BA.

But my days at university were the happiest of my life up to that time.  I loved my "uni."  I absolutely thrived there.  I felt as if I had friends from all sorts of fields and when I started my Master's and met one of my best friends in grad school, she marveled that I knew "everyone" on campus.  I didn't, of course, but crossing the drill field was often quite a social event because I always knew quite a few people. 

I got on very well with my profs, one of whom is still a great friend to this day.  In fact, I brought my fiancĂ© down to meet him and got "Papa Squires'" OK on marrying the guy.  It was not an easy-peasy interview, poor hubs.

So, when I got sick in grad school it was because of reasons that had to do with finishing my Master's while simultaneously writing papers, doing original research, writing my Master's thesis and reading ten novels a week, reading critical analyses of the works I read, and often writing papers on the novels, as well as teaching two freshman English courses, and grading approximately six papers each quarter (with huge corrections and suggestions along with conferences) for about 30 kids per class.  

Then I got sick in March of 1975 but as soon as my mom could get me well enough in April, my friends all pitched in to help me study for my Master's Oral's, the dreaded two-hour exam with several professors who could ask me anything at all to do with any period of British or American literature (from minutiae such as obscure quotes and dates to my take on huge literary overviews) as well as the history of the two nations (with a tiny bit of French history thrown in, given the impact of the French revolution on British and American literature).  All this with only a can of tuna each day, with 2 teaspoons of mayo mixed in and 2 saltine crackers.

People commented about my weight and I loved it.  Skinny was in, maybe even more so then than now.

Another "mistake" I made was my lack of sleep.  My final year I lived on 2-4 hours of sleep a night and was famous for my all-nighters.  However, what will always stick out in my mind is Thanksgiving week when I couldn't make the 12-hour drive home and stayed at school to finish as much work as possible for the quarter.  That week I survived on 2-4 hours TOTAL for 7 days and nights.  Nuts?  Maybe and probably, looking back, but it was a "no pain, no gain era."   Furthermore, I had always been driven and determined.

But happy?  I was in absolute 7th heaven.  I was able to get my BA and my Masters in just 5 years total - which should have taken me 7 or more years - all while teaching too.  The only downside was that after the flu (six weeks and going back way too soon but I was so determined!) I was suddenly having trouble recovering my stamina.  I couldn't do what I did before.  I even ended up in the hospital that summer (at my mom's home in NJ) with a bad case of colitis from all the antibiotics I had to take, because all my secondary infections had secondary infections.

But I swear: If I EVER again come close to a medical professional/specialist who SHOULD know better who DARES to imply that anything was psychological or psychiatric to my illness, I may have to b*tch-slap him or her.  And I don't give a flying "F" if I'm jailed for it: it might be the only advocacy I can see myself doing at this stage in my life!  Psychological factors can be nothing further from the truth.  

Shortly thereafter, (that is, after receiving my MA), I met my hubby and I knew the moment I laid eyes on him, 38 years ago if anyone is counting, on an unwanted "blind date" that we would marry ("Aw sh*t, this is what I've been waiting for all my life?!?" is what ran through my head as I laid eyes on him - I so was NOT looking for marriage but wanted my career).   Yet within a month we were making wedding plans.  Two days later I started working at another university a few states away from NY, started my PhD, something I'd wanted all my life.  

However, I knew that I couldn't handle a long-distance romance, teaching, and working on my final degree, though ironically, I had very little time to finish my PhD.  For some reason, all my credits were applied towards my PhD and since my Master's thesis was original, I had to just fill it out a bit.  But going back to school wasn't working.  I was happy but I was too sick.  I had a good friend who would occasionally con me into playing racket ball with him but I couldn't go but five or ten minutes without falling.  I soooo loved going to school.  I was making friends and I had my old friends from camp at church, much to my joy, plus my married BFF lived in the area.  

Instead Lady Luck came around when I decided I would stop after one semester.  I got two jobs in prestigious publishing houses in NYC, right on 5th Avenue.  People fought for or only dreamed of these kinds of jobs and then in the mailrooms (as I'd have been happy to get a job there just to get my foot in the door).  Scribner's and Norton's?  OMG!  But I arrived in NYC with glowing recommendations and immediately found a job with an editor who spent most of his time telling me stories about Franklin Roosevelt, the Kennedy's and even Svetlana Alliluyeva, Stalin's daughter: that was the sort of family he came from.  

When his assistant came back after almost 3 months of medical leave, I already had a job lined up in trade sales at Scribner's where I made decisions as to which books got reprinted and how many copies.  Those were pretty major publishing houses!  They were something I couldn't have imagined in my wildest dreams, the home of Hemingway and Fitzgerald in the case of Scribner's, just to name two greats.  I eventually had three wonderful children and my hubby is a professional.  What more can/could a girl ask for?

No, my real nightmare began only once I started to complain to doctors that there was definitely something wrong with me.  Then the "psychological sh*t" aspects of my health started to come into question.  But they were so very wrong.   Very wrong.  Things were great.  "So, up your's," ANYONE who wants to take it up with me!  I'm game!  MORE than GAME!

At this point, I can safely say, I know MORE than most frigging so-called specialists.  Want a fight, an argument?  You have NO idea whom you are dealing with and who I have on my side as the experts, so step down and shut the "F" up!   Stop torturing the kids who are coming up now, a third generation, for God's sake!

Shame on you that you guys never had the nerve to stop or truly investigate the criminal misappropriations of the very few funds the NIH had to research CFIDS.  Shame on the CDC guys who went out to Incline Village to investigate the breakout of a "new" disease and spent their time skiing instead.  And shame on some of the so-called specialists out there who are, frankly, media whores.

That's how I see it and that's 38 years of crap that I've put up with which has done nothing, but allowed a third generation to now be just as sick as I got back in 1975.  For heaven's sake, 15-year olds are now getting sick!  THAT IS JUST UNJUSTIFIABLE AND WORSE!!!!   It's criminal!

Yes, I'm all for breast cancer awareness and research.  But perhaps it's time to put some of those dollars into CFIDS and fibro.  The three leading causes of death for CFIDS?  Cancer, heart disease and suicide.   Funny, how the government doesn't even keep track of the suicide rate.  And the suicide is NOT psychological.  It's the pain and suffering that can't be tolerated any longer.  Make no mistake: the treatment by the so-called specialists is also killing them/us.

There's an expression, "they kill horses, don't they?"  Trust me.  We are suffering MUCH more than horses!!!

Guess Who the Idiots ARE: The NIH?

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  1. I came across you in my own research, Thank you for your Blog! I am now following you here Pinterest and FB. I suffer from RA/FM/CFS plus a million other things that go hand in hand!! Nice to see you fighting the good fight!! Your new pal


    1. Thank you so much for your words, Ashley. So sorry that you have so many problems, but I think you'll find some kindred spirits here! Welcome! xx