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.

Sunday, June 23, 2013

"Outing" Myself!

In the past year plus that I've been writing this blog, I've pussyfooted my way around who my sources are and about my own qualifications regarding all things fibromyalgia and CFIDS/ME/CFS.  Though I'm not ready to out any of my medical sources, I am now ready to "out" myself.  

I think that it's common knowledge that Irritable Bowel Syndrome (IBS) is a huge unpleasant problem in CFIDS and fibromyalgia.  But do you know who was one of the first to describe this association in medical literature? Music - please.

Moi.  Me.  Yes, me.  Laughing out loud!  I've kept mum about part of my backstory here on this blog for many reasons.  One of them is that I wanted to establish myself before revealing this bit of my history. I also wanted to make real friends on twitter, for example, knowing that they are my friends because they like me and read my blog without any sort of gimmicks.  I'd wanted the support, encouragement and insight into what readers and followers gave me and what I gave them to be untainted by "whom" I might just possibly represent. I also didn't want to start going about showing off or to have people thinking that I'm showing off. However, I think I may have come off as a bit of a braggard because I was so defensive of my sources and my own complete history - just maybe!

But getting back to the IBS.  Because this was such a novel idea, at first this correlation was introduced as an abstract at a medical conference.  It was later published in a rather small journal, in our then rather-new home state.  (It didn't bother my rheumy.  He's very well published and internationally known, has a standing column in a pain journal, has out-the-wazoo credentials - I get only the best for my readers!)   It took years for this relationship, that is, IBS and fibro, to gain general acceptance.  And now look where we are.  Irritable Bowel Syndrome is so prevalent and so accepted that it might even be considered a characteristic of fibromyalgia. (Ah! Still waters do run deep don't they?  I do look so unassuming, no?) 

So why now as far as the outing goes?  I've "outed" myself because I'm tired of reading about uninlightened (shall we say?) doctors out there and what they are doing.  And I'm thoroughly disgusted with some of the medicine I see practiced by those same doctors.  

I'm also tired of seeing bad science out there.  I'm tired of reading really bad thinking and hairy schemes that patients are desperate to apply to themselves and I'm disgusted with half the psycho-babble out there.

Furthermore, I'm tired of having to write about medical problems which I know to be true and having to try to convince people that I know what I'm talking about when I do write about DHEA, Human Growth Hormone Deficiency and other hormonal deficiencies - or any other aspect of fibro and CFS for that matter.  And I want my readers to know that if I write something, it is in fact, true.  It may not apply to you, but it is grounded in fact - and is, in many ways, before its time.  (She says ever so modestly!)

If a reader doesn't know my "credentials," how can he/she begin to understand that my blog is grounded in real science and real up-to-date developments in the field?  This is a problem I've lived with since I started this blog.  For the most part, people have believed me in the past because I have been ill for so long, for 38 long years.  And doctors believed me, luckily.  I have stated that I have impeccable sources and I do, indeed, have them.  However, it's getting harder to write posts where I have to tiptoe around what my own "credentials" are.  So, in light of making my life easier, I've decided that I won't need to be quite so careful about my own credentials.  After all, getting an idea accepted by the medical community is a huge deal, being reviewed by other physicians who have huge names.  It's much bigger than a blog or even a book.  

I was, in fact, an English major in my former life and I do have a Master's degree in English - hard as it may be to believe because I know my writing sucks is so awful.  However, the "awfulness" just gives more credence to the fact that I am quite impaired by CFIDS and fibro.  Everything I've written about myself in the past year and a half has been true as far as I can remember.  OK.  Memory may be a sticky wicket here. (!!!) However - thankfully! - hubs has a good memory and I try to check with him about what he remembers.  But that English background was very useful in that it taught me how to research most subjects and, more importantly, how to think logically and thoroughly, much of it to my family's chagrin.  They have stated often enough that they don't ever want to be found inside my head.  Ever. <sigh>

So, how did this bit of medical history start?  When I came to my rheumatologist and brought up my theory of fibromyalgia coexisting with IBS, we decided I would write up a simple questionnaire for his patients and see if I was seeing things right.  Lo and behold, I was!  Other ideas I had for research (including, infamously, a question about the correlation between breast implants of women who had implants because of cancer vs. those who had implants solely for cosmetic reasons - back in the late '80s!) which I never took credit for. But I know they are out there, as do my doctors, and I have to admit that when I was in my youth I loved to stun (doctor) friends at medical conferences by asking questions - and that they had no idea where these ideas came from.  You might say that I'm good at thinking outside the box - thanks in huge part to my left brain damage  - the side that is "numbers" and science, and thus medicine as well.  My left brain is quite damaged (see this post regarding SPECT scans) and I've had to adapt to right-brain thinking, much to the betterment of understanding what's going on inside of me.  Or so I tell myself! 

It might also be the time to say that I've done my fair share of advocacy regarding fibromyaglia and CFS/ME. I did it all before there was any sort of advocacy to be done.  (Did I forget to mention that my rheumy was on the committee that famously established the criteria for fibromyalgia in 1990, the youngest on that committee?  Boy!  Did he ever have a hard time getting credence in the medical community with that "newfangled" idea!)

I take my "outing" very seriously and do so with great hesitation.  I don't want anything I write to be taken with any more seriousness than it was before.  One's doctor is always the way to find your answers.  I only write my own experiences and what I know.  I am a patient, albeit perhaps a long-term patient, who has had some pretty incredible experiences.  I've tried to make the best of my illness.  I've always said, decades before this blog could ever have been imagined, that if I had to be sick, I wanted those coming behind me to have an easier time of it, that their doctors could take a lesson from my life.  Remarkably, that has happened in the name of my doctors who believed I was sick at a time when fibromyalgia was considered something that rheumatologists and neurologists had made up in order to make more money and business for themselves.  True! 

And so, I hope that when you read my posts you're able to see where this bit of information of how I came to have such "vast knowledge" regarding fibro and CFIDS originated.  And for the sake of full disclosure, the presentation of the correlation of fibromyalgia and Irritable Bowel Syndrome can be found at:
  • COEXISTENCE OF IRRITABLE BOWEL SYNDROME AND FIBROMYALGIA. Roma((((Blanked out name can be found if you look hard enough!), The West Virginia Medical Journal 84: 16-18 (February, 1988).
  • COEXISTENCE OF FIBROMYALGIA AND IRRITABLE BOWEL SYNDROME. mano,*(Blanked out name), Romano, I. Abstract. Presented at the American Rheumatism Association* meeting Savannah, Georgia, December, 1985.
1985!  Can you believe it?  I can't!  We were still debating what the name of this disorder would be, "fibrositis" or "fibromyalgia."  Those were the days, as one song says.

And with that I leave you - but not permanently, I hope!  As always, I  hope that everyone is feeling their best, only better - fibro-logic at its best!  Ciao and paka.

(*Note: The American Rheumatism Association has since changed its name to the American College of Rheumatology.)

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  1. From the heart as always Irene loved it :0) ((hugs)) xxx
    Just wandering have you ever tried peppermint tables my daughter suffers with IBS with her anxiety disorder can be doubles in pain at times xx

    1. No, I haven't, Sophie. What kind are they? A brand name needed so I can find out where to get them. Would Altoids work? Thanks for the suggestion and waiting to hear back from you! xx