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.

Tuesday, December 4, 2012

Fibromyalgia and the Lottery (or Santa)

Last week as "everyone" knows, there was the great brouhaha about the many multi-millions dollar lottery which took the country by storm.  I'm not one for lotteries, but with all the coverage on the news, it was difficult not to have it register on my personal radar.

I just thought I'd write and tell y'all about what I'do if I were to be the winner.  Each and every time there's a huge lottery, I have the same dream.  And a great dream it is too: most who have won these great lotteries have not survived the riches.  That's not to say that I'm better than anyone else.  It's just to say that I have such plans that would hopefully keep at bay those demons that have harmed so many others.   For example, relatives coming out of the woodwork, which do so much damage to the winners, would have no claims on the funds asking and saying, "but giving me a couple of million wouldn't hurt you."

First, I must admit, I'd have the usual.  I'd buy or build myself a new house with enough land for privacy and then build houses for my kids as well (on that land, of course!).  I'd also throw in a barn with a couple of wonderful horses.  Yes siree, I have the plans all figured out.  Because then....

I would set up a fibromyalgia clinic, though I do admit that I'd probably be heavy on the CFIDS/ME/CFS area: we deserve it!  Yes, that's been my dream for at least the last 25 years of this cruddy run of 38 years with the DD.

"My" clinic would definitely be a "holistic" clinic in the complete sense of the word where not only would we have doctors dedicated to the care of the CFIDS/etc and fibro patients, but we would also have therapists specializing in the sorts of care that help each patient for the unique set of problems she/he has.  No rigid thinkers allowed would be one motto! 

I'm not sure that there would be enough money for bench research, but there would certainly be a lot of leeway for clinical research: think of all the brain-storming that could take place each day!  Think how far we could come in the observations of all these good people working together and seeing patterns and going from there.  Again, no rigidity, but looking for patterns and what works would be there!

The doctors that would definitely be needed are:
  • CFIDS/ME specialists
  • Fibromyalgia specialists
  • Sleep specialists
  • Autoimmune specialists
  • Dentists: one example for the need is because of the dry mouth problems which cause so many dental problems including losing all teeth.
  • Ophthalmologists: there are a lot of visual problems with "us."
  • Neurologists
  • Cardiologists
  • Endocrinologists
  • Psychologist/life counseling: this would be tricky as we want to help patients deal with the changes in their lives and help the patient to establish what he or she feels is realistic and healthy.  However,  we most certainly would NOT want to have those who try to throw patients back into the psychiatrist waste dumpster ("wastebasket" is too small a word).
  • Psychiatrists: I'm still iffy on that one!  Way too much baggage (on the part of the shrinks!).
  • Dermatologist: I'm always going on about our sensitive skin and the cruddy things that happen to it!

    Some of the therapies to help the patients get back to as normal a life as possible would be:
    • Rolfing
    • Applied Kinesiology
    • Acupuncture
    • Acupressure
    • Nutritional IV's: after determination of what vitamin and nutritional deficiencies are there.  
    • Nutrition counseling: special diet advice, tailored for each patient for each individual's particular needs.
    • Chelation services: for those who have heavy metal toxicity.
    • Massage therapy 
    • Sleep study labs: and ones that allow for more than one night!

      And then there are the services:
      • A hotel on the "campus" where patients could room in while they have their work-ups or small apartments for extended periods of stay.  
      • Laboratory services on or near the premises so that the blood work needed to determine deficiencies, etc., would be available as soon as possible.  
      • Testing such as MRI's, SPECT scans (if they can still be found we'll find them), fMRI's, etc.
      • AND a clothing store for those who have trouble with finding the sort of (nice) dresses, pants, etc. I'd even have a specialist in bra fitting: you'd be surprised the difference a properly fitting bra can make in the area of shoulder pain and so forth.
      • Activity facilities such as swimming or horseback riding.  
      • Cats and dogs to help soothe the patient who's away from the family - besides, therapy dogs are just so darn cute!
      • Movies and shows that make us laugh: we need those endorphins!
      • Hair facilities for those who have problems with hair loss: I've written enough about my own struggles with hair!

        Yes, everything would be available on this "campus."  We'd get people who really understand our conditions, who really believe in our conditions and are top rate.

        I think a few million dollars short of a billion should do the job?  What do you think about this idea?

        I hope that everyone's feeling their best, only better!  Ciao and paka.


        1. That sounds amazing Irene. But why oh why do these places not exist already? :-( If only. Xx

          1. In a perfect world, Sian... However, politics, economics and all sorts of other issues get in the way, as we pay the price. xx