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, March 12, 2012

The THING About Waiting Rooms...

Legs in training....

Since I promised to bring survival tips for my hoped-for readers, here's one 
that may appear to be a bit unorthodox but a real winner for me.

Anyone with any sort of chronic illness is very susceptible to germs and viruses 
from everywhere.  Obviously.  Duh!   With CFIDS/CFS/ME, our immune systems are 
hinky, thus the "ID" in CFIDS, the "Immune Dysfunction" syndrome part.  Our 
immune systems are over-active and under-active, both at the same time, so very 
contradictory in an illness full of contradictions.

I need to meet about every month or so with my long-suffering GP, who of 
everyone I've ever seen in my plethora of doctors over the past 37 years, from 
New York City across the good old USA, has been the best and most successful 
help in my care.  We make a good team, actually, as we've together tackled 
research and question seemingly everything that comes our way.  Some years we're 
gung-ho about learning every new thing, other years we just throw up our hands, 
give up and go into survival mode.  A small-town GP, he's more than a bit 
understanding and has more patience than I could ever dredge up, which is not to 
say we agree on all, but just that he's one of the best things that's ever 
happened to me.  Oh, he does sometimes see me as a bit of sport and I just know 
the man often revs me up to hear what will come out of my mouth next.  But 
compassion when need be, it's there!

However, I hate the germs and viruses that I seem to bring home each and every 
time I see him...or my dentist for that matter.  With my dentist we've agreed 
any work that needs to be done can start around April, once flu season is over, 
but must end by September, before flu season begins.  And the best part, 
perhaps, is that he's enforced these parameters at times when I've thought to 
myself, "flu season be darned," crazily thinking I was just too careful.

I can't exactly not see my GP, however, for so long.  So after many years, which 
included two serious bouts of pneumonia, we've worked out a system that seems to 
be the answer to some of the problems of my funky immune system.  My 
long-suffering hubby goes to the office, as I stay behind in the car with a book 
or my Kindle, signs me in, takes care of whatever finances need to be addressed 
and actually SITS in the waiting room for the moment when my name is called.  He 
then quickly runs out to the car and we go in through a back door, thus avoiding 
as many sneezing and coughing people as possible.

How I wish we had some sort of system like that when the kids were little and 
you'd take your children in for a "well visit," only to bring home three kids 
laden with chicken pox or some of the other childhood illnesses lurking in the 
pediatrician's office!  But I digress....

To tell you the truth I am always tempted to take some sort of germ-killer in a 
can and spray it at all within my reach.  Despite many outrageous things I HAVE 
tried, Lycol'ing my way to an exam room is even too much for me, SO FAR.

Yes, I may sound like a diva, but here is an example of why this has become a 
necessity.  I came down with a common bug going around one winter and was sick 
as a dog for two solid years.  Just as I was in the home stretch something 
strange happened to my legs...they turned blotchy and mottled with lovely shades 
of purple and red.  They've stayed that way for the most part, unfortunately.  
They are of huge interest to my doctors...they seem to love looking at them and 
speculating as to how the heck THAT happened.  I'm not so easily amused.  And 
poor hubby - my legs were what he'd first fallen in love with, only later my 
sparkling personality!  <wink!>

So, if your immune system is really wacko and you know that a needed or required 
visit to your physician may cause you to come down with everything down to the 
seven plagues of Egypt, consider my strategy.  Granted, it may be difficult to find 
someone in your life who's willing to sit in a waiting room full of sniffles and 
sneezes but it's a heck of a lot harder to come down with a bug that can take 
months and months to rid yourself of.  Plus I find that with each "flare," we do 
get more permanent damage to our bodies.  Ask my legs.


  1. Greetings from Ohio!! Great stuff!!

  2. So good to see I've got some readers. Thanks!

  3. I have EDS-H (since birth, diagnosed at 30), RSD/CRPS (since 1993 and 1995), JRA (Diagnosed at 12), Atopy (since birth), Raynauds Disease (diagnosed at 12), HLA B27+ (since birth/diagnosed at 12) and recently have/had (when does have become had?? diagnosed 22/12/11)) breast cancer (diagnosed at 40 yrs young).
    Waiting rooms are the WORST place for germs and the ER/ED/A&E at a hospital is even worse.
    When I was going through chemo I had to be so very very careful as my already dinky immune system was wiped out by the medications fighting my cancer.
    To go to my GP/ PCP, (which I now only have to do every 3 months as we have it set up that I can ring through for scripts needed between visits and I get my pain meds etc on authority and supplied 3 months at a time) what I did was make my appointment over the phone, rock up at the clinic, and call on my mobile/cell phone to say I was there and in the car park (so basically sign in), then they would call me on my mobile/ cell to say it was my turn and meet me at the door with a mask (the 1st time, they gave me a handful for subsequent visits), hubby would then open the doors etc and we would go straight to my Dr's room(if the patient before me was contagious my GP would clean the chairs and surfaces with antibacterial wipes etc,I would then go through my appointment, and go back to the car, hubby would take any paperwork, pay etc and he would leave, in the car I would wash my hands with alcohol based hand sanitiser. I managed not to get sick once (actually during the worst of my chemo my GP let me do all of this over the phone, so that I didn't have to go in at all, and she didn't charge me either). I never once got sick from going to her. '
    I also had alcohol hand sanitiser (the kind used in hospitals) at our front door and everyone entering the house had to use it, no one was allowed in if they were sick or had been near sick people and we banned kids and anyone with kids (we don't have kids, and kids are germ machines etc).
    Hubby was extra careful when he went out, that he wasn't around sick people and he sanitised his hands when her entered the house too.

    1. Sorry I had to split this VERY long post over 2 posts because it said it was too long :o)

    2. Fourth attempt to try to thank you. HELP! I can't rewrite it again! And I wonder how many have tried and haven't gotten through either!
      Thanks so much for writing in about your experiences (above, below and in another post). GREAT job in your fight to protect your sensitive immune system. Please keep in touch as to how you're doing! xx

    3. No, your comments weren't too long! The box is crazy! It threw out three nice long-ish replies to you and you got only a tiny bit of what I finally wrote. Thanks for trudging on! xx

  4. I did end up in the ER/ED/A&E once night when my temp spiked to 38C/100.4F (this is a huge issue when you are on chemo, and warrants an instant trip to the ER/ED/A&E), by the time I had grabbed (my prepacked chemo emergency bag) got in the car and hubby drove me to the hospital (5 min's from my house), my temp was 40.6C/105.1F and I was given a mask at the door (my community nurse had rang ahead to tell them I was coming in, it was easy to tell who I was as I was as bald as a newborn mouse :o)) and my temp was taken (40.6C/105.1F) and I was taken straight to an isolation room and had a nurse sitting with me in gloves, gown and mask, until i was taken up to an isolation room on a ward in the hospital (this took time, because they had to remove the patient in it (when not needed for isolation at the public hospital, these rooms are used as private rooms, but contagious people are not put in them if they can help it), clean the room from top to bottom, including the equipment, bathroom and bed etc. I then spent a week in full isolation (water was sealed and bottled, everyone had to wear,gloves, gowns and masks to enter etc) on IV antibiotics (with a diagnosis of neutropenic septicemia) until my neutrophil count came back up (was 0.00 at admission and wasn't allowed out of isolation/to go home until it got to1.0).
    I did end up at the ER/ED/A&E one other time and then I wore a mask,told them I was on chemo so they placed me away from all of the sick people and I stood/ sat outside the ER/ED/A&E until called.
    There were other precautions we had to take as well, and that is to wash all fruit and vegies, and to cook them well, to make sure all meals were cooked well and served at the right temp (hot food hot,cold food cold etc), wash/ sanitise hands after touching money (that stuff is FULL of germs), ATM's (tests shows on money and ATM's the germ count is the same as a public toilet ), door handles (believe it or not the handle on a public toilet is as dirty as the toilets them selves because some people don't wash their hands, you then use the toilet, wash your hands and grab the door handle to leave and thus recontaminate your hands (I tried to stay away from public bathrooms as much as humanly possible, and managed this quite well), shopping trolleys, hand rails, button etc
    This may seem like overkill to some but it is OUR health and we are the ones who suffer if we get sick.
    17 months after finishing Chemo my immune system is still crap (it can take 2 yrs or more for a normal persons immune system to get back to normal, and mine was dinky to start with due to chronic pain and conditions etc), I am extra careful of touching things and being near sick people etc. I am not as strict as I was on chemo, but I still carry hand sanitiser everywhere and use it before I eat or touch my face etc, use to to wipe public toilet seats (a little on some toilet paper and give a wipe works wonders) if I ever need to use them.
    It is hard for people with fully functioning immune systems to realise how much it impacts on your life, but we can't be comlacent because WE suffer the consequences, and what might be a minor cold or a few days of flue for someone with a fully functioning immune system can be months of illness and complications like pneumonia for us.
    Thank you for your post, blog, website and you go girl :o)
    Sorry this post is so long...
    Shazinoz :o)