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LiveAndLetLive 60
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Rob Derksema
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Dec 20, 2003 07:15 PST
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Live & Let Live !
Disabled ? Not ? Difference ?
This *weekly *news-letter is designed to support disabled people from
every age & every kind of disability. Links to organizations.
Opportunity for reactions, & sharing thoughts & ideas & finding
solutions to some of the problems encountered in our -daily lives.
Site has Dutch & English -Links. *News-letter in English.
Come join us...the more souls...the more joy !
Rob
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My own story 60
I repeat: My own story 60! Still going strong, I tell ya!
I told you Opa was getting sicker. Bett reacted the same way, only
sooner and stronger!
Half a year before Opa died she landed on her bed because of her
stomach. She got very sick, but managed to leave her bed again. She was
convinced of the fact Opa would die soon however it really didn't show.
The fact he got sicker at the moment was not abnormal. His condition,
his age, not much will to live, because of being blind...
That morning in September 1985, the 15-th to be exact, Bett was awake
all night. "I have to go home, Rob, Opa is dying!" But when we tried she
didn't have the strength to get in her wheelchair. If she felt something
already! In the early morning, around 6 or so, she suddenly told me:
"Rob, I have to get to the telephone! I know Opa is dead! I know, I feel
it!"
Together we managed to get her in her wheelchair. Very hard, but we
managed!
She raced to the telephone, and getting contact with her grandmother she
didn't ask anything, but she said: "I know Oma, he is dead, am I right?"
And the way she reacted I knew she indeed was right! She gave Oma her
condolences and just cried! She gave me the telephone after a while, I
gave Oma my condolences as well, and Bett drove to the bedroom again.
For the first time I remembered she couldn't get into the bed by
herself. I had to support her, she almost fell, and I had to tuck her
in. I tried to comfort her a bit, but that had no sense at all, and how
could that be. Considering the fact that she just more or less lost her
father. Worse even. She lost the man that was not her birth father, but
the man who voluntarily became her father while her real father didn't,
and neither her real mother. The shock was therefore multiplied by 10,
or 100!
A few hours later she had to pee. Normally we used the bedpan for the
night for her, because that was much easier. During the day she never
went on that bedpan, but this day she had to, for the first time. She
couldn't leave her bed, even when she tried. She was paralyzed for a
part. She had normally spastic pareses in both of her legs, but was able
to walk a small distance on two crutches. But now neither one of the
ways to go to the bathroom worked, in her wheelchair, nor on crutches! I
helped her off the bed-pan, and told her: "When you have to go to the
toilet again, that might give you the strength to do so!"
I didn't know if I was right in the first place, but I didn't want to
take away all her hope and dignity!
The day went by as in a dream. A bad dream, that is. Bett started to
throw up, and was not able to eat anything. I only could feed her a few
dairy-products.
The next day I called our family doctor, and he came by right away. We
told him about Opa, and he only could tell us that Bett had an infected
stomach and infected intestines. When we told him that Bett couldn't
leave her bed anymore he answered us that it was because of the shock,
and it might get better after few days!
So life for her was getting much worse, but for me as well!
Rob
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Keeping the house clear of clutter is a great idea, but to eat
healthier, the clutter that needs clearing is on your kitchen table.
Clutter and other distractions can keep you from listening to your
body’s hints about being full. Too many things to look at - TV, bills,
newspapers, books, and so on - may be partly responsible for many people
not seeing how much they eat at a sitting.
Clear the table of everything but dishes and maybe a nice centerpiece.
Mail and other clutter belongs elsewhere.
Avoid television and reading while you eat. Anything that distracts you
while eating also distracts you from listening to your stomach tell you
it’s full.
Serve your courses individually. Serve and eat your salad; then serve
and eat your entrée. Leave extras on the stove. This will stretch the
meal out and you will recognize fullness sooner.
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My feelings on the medical system.
I read your e mail story, sbout your multiple medical probelms + @ 1st
I thought "How terrible for this person I don't even know, but WHY am I
receiving this?" When I read that you ALSO had fibromylagia, I saw that
we do in fact have something in common. Here's my story..I'm sure not
as bad as most , but to me it's been a long bumpy ride! I am now a 45
yo woman, married almost 16 yrs w/ 2 children, both girls ages 10 + 13.
My husband + I met in 1978 when I was just a graduate nurse, but we
started out as friends + well, things progressed from there. Obviously
, if you do your math, we didn't hurry into marriage, not getting
married til 1987..although he wanted to, I was not sure I wanted to
settle down. My medical hx: I developed kidney stones + pyleonephritis
when I was 16..since then I continue to have the occasional kidney
probelm, am followed by a urologist for that. I have had 2 living
children, 1 .."Natural" childbirth....that's right 34 hrs of labor w/
contractions starting 5 min apart (next child I said EPIDURAL + it was
great!!) + a sad late term miscarriage. My point here is that I know
REAL pain..that of kidney stones + long unmedicated childbirth. I have
worked as a critical care RN (ICU'S + ER's) for almost 18 yrs..stopped
working outside the home after the birth of my last child, as I have no
family in the state + I really wanted to spend the time w/ my children ,
instead of choosing what holiday I wanted off (pick ONE) to spend w/ my
family. I also have always had dental problems...mutiple + $$ dental
work done on my teeth..but NO ONE EVER MENTIONED that perhaps there was
a "bite " probelm w/ my jaw until 6 yrs ago. Sudden;ly...the "dental
experts" (+ there were LOTS of THEM!) diagnosed me w/ a sever
malialignment of my jaw + TMJD (temporalmandibular joint disease)..a few
even told me that I have had arthritis in my jaw sine I was 12 yrs old!!
But, as a child, when i would complain about the jaw "clicking" or
sever headaches I was told it was "nonsense" + my parents did NOT have
the $$ to take 4 children to the doctors w/ what they viewed as
"minor" complaints. So, w/ this jaw malformation, surgery was the only
route (I have had surgery before..related to kidneys + more recently a
breast lumpectomy) I had a mandibular advancement, basically my jaw was
broken, realigned + artificial bone was implanted + my jaw was wired
shut for 3 mths. Which was NOT easy, but I survived even though the
hospital did NOT provide me w/ ANY info regarding a diet w/ my jaw wired
shut, so it was a good thing I'm an RN!! Well, I NEVER recouped after
this surgery..initially thought it was from the general anesthesia +
long surgery (5 hrs!)..when I kept bringing this up to my surgeon, he
initially felt it was post op pain + gave me percocet 1 tablet 3 times a
day, which really didn't help that much + I knew it should have!!
Eventually my surgeon told my husband + myself that there was nothing
wrong w/ me, he was unwilling to perscribe any further paim medication
...the severe headaches (blinding migranes), the total achiness all over
(felt like I had the flu), my insomnia, inability to think straight,
freq mixing up my words when speaking, WICKED sensitivity to sound +
light etc. I was referred to a pain clinic. They also were not quite
sure what was wrong w/ me, but that didn't stop them from putting me on
a myraid of nerological meds, giving me lido infusions on an out patient
basis + even doing this most unpleasant "sphenoganglion nerve
block"..anyone who's had this knows what I'm talking about. NOT PRETTY!!
I went from 1 MD to another in this medical meca of Boston..did/ tried
eveything they told me to ..including sleep studies, biofeedback,
mediatation, yada yada..still symptoms were getting worse. They
suggested I see a shrink, so I said fine as I was starting to doubt
myself...maybe I was crazy + all these symptoms were in my head!! Thank
God, my husband + GOOD friends felt different (though i actually did
have a few friends that thought maybe i needed a shrink for my
"symptoms" too!) . The shrink ( who I was told was soo well known in
Boston) came up w/. a diagnosis of seasonal affective disorder...this
based on ?'s such as "Do u like to sleep in on rainy days?" "Do u
prefer sunny or rainy days"...so I knew HE was wrong too. Meanwhile my
symptoms were getting so bad, I could NOT get out of bed myself...my
husband had to actually pull me up (FYI: not that it makes a big
difference, but I'm not overweight either). Although I actually had 1
doc tell me that if i had not gained so much weight w/ my preganancies
(or as he put it "ATE EVERYTHING IN SIGHT WHEN PREGNANT!!"), I would not
have any problem now...just to remind u, I lost almost all of my
pregnancy weight BEFORE any of these symptoms appeared. It seemed
EVERYWHERE I turned, I had an "expert" telling me it was all "in my
head". The neurotic housewife theory I guess. I could not do 1/2 of
what i used to be able to do...I used to volunteer quite a bit, but I
was in so much pain..my legs felt like they were cement, my eyes teared
constantly due to pain BEHIND my eyes, yet it was "all in my head?"
FINALLY a FRIEND of mine who has fibro ( + previously was a marathon
runner) suggested I may have the same thing, she referred me to her GP,
who diagnosed me w/ fibro, but wanted me to see "Fibro" specialist. At
this point I naturally was leary of "specialists" of any kind, but DID
go (reluctantly)..he also diagnosed me w/ fibro + Chronic Fatigue
syndrome. My pain now is not totally under control, but it IS BEING
WORKED ON! And, no one is telling me I'm crazy! I'm just starting to
see light @ the end of the tunnel. I also see the psychopharmacologist
that works w/ the fibro expert + he is the one who orders my meds +
follows me carefully. He does NOT make me feel like I'm a nutcase or
drug seeking..even though I HAVE @ times now been on some heavy duty
pain control. MY husband also works in a hospital + happened to attend
a symposium on Fibro + chronic fatigue syndrome (Epstein Barr)..+ during
that symposium, my husband tells me that MD's from ALL areas of this
Boston Hospital (including but not limited to pain clinic MD's)
questioned the validity of fibro + chronic fatigue. They felt that
these were "made up" diagnoses for hypocondriacs, Drug seekers ,
neurotic people etc + MANY stated that they would NOT treat patients w/
these diagnoses for pain w/ anthing besides motrin +/or tylenol!! Its
like we're back in the 1940's! Prior to finding REAL fibro + chronic
fatigue treatment, I tried holisitc medical care...where they were
actually understanding, but it just didn't work on me. The mindset of
these "Medical professionals" just galls me. Between my jaw surgery (
which i have NOW been told was probably the triggering factor to the
fibro, which freq shows its' ugly head after a tramatic event like an
accident or surgery) + before I was finally diagnosed w/ fibro + chr
fatigue, I had a lumectomy on my left breast after abnormal mammograms.
I was lucky though, as I didn't require chemo or radiation. I'll tell
you, THAT was alot easier to deal w/ for me than the fibro + chronic
fatigue. Doctors accept that diagnosis cause they can "see" something
on an xray to confirm their diagnosis...not so w/ fibro. Plus we LOOK
NORMAL.. We don't look seriously ill. If I could just tell you HOW many
times, I have been told I look "good"...when in fact I felt horrible you
would be astounded. I am STILL angry w/ the way the medical community
views these "syndromes" + treats patients w/ them. I am so sorry that
this letter is long. I have not written it for sympathy or prizes. I
have written to make others aware of what it's like having these
diagnoses + how I have been treated . I am ashamed of the medical
community. Additionally, I value my privacy quite a bit, so this WAS a
HARD letter to write, but I have weighed things out + feel people SHOULD
know..if you don't have a medical condition that shows up on x ray or
bloodwork, docs tend to think "shrinK". And psychiatrists DO have their
place in society...I just don't feel it's right to turf a patient off to
one just because THEY don't know what's wrong w/ you, so it MUST be all
in your head!
Thanks for letting me vent!!
Sincerely,
Pat
Thank you for sharing with us Pat. I'm quite sure your story will help
others in similar situations.
Rob
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Newfoundland - the Netherlands 12 - 5
You've seen it well!
The Netherlands came back with one point! How is that possible, you
wonder?
Well, and I have to start with the fact I understand very well that
Canada is so enormously big in comparison with the Netherlands! Even
Newfoundland, a tiny little province in Canada is 12 times as big as the
Netherlands! Not for nothing a lot of Newfoundlanders consider
themselves a country, and not a province!
So the fact I am referring at is a lot easier in Holland than in Canada,
or even in Newfoundland, I know that, but........
It wouldn't be me, Rob Derksema, if there wasn't a: but...
If I am seriously predicting the weather, seriously I say, I would not
make so many mistakes as the Canadian weather-forecast stations, and
especially one of them, the Weather-network, also available on the
Internet under: www.theweathernetwork.com
Don't go look there right away, it can wait, and mostly it can wait
because they haven't had there predictions right! Maybe one time in a
month they were right! Not so difficult to state it is freezing cold
when outside is a blizzard. I'll tell you a secret. Don't pass it on to
others.
I could go to any news-program, I know, went already to a few, but that
was almost the same. The Weather-network is pre-programmed on that
television on channel 17. I don't know how I did it, but every time I
put the television on there, it goes right away to channel 17. I don't
like to mess around with other people's property, (we don't have a TV of
our own at the moment), so leave it be.
But therefore I always look at that particular channel for the weather.
I do that for a month now. Before we decide to go to Long Island, or
Grand Falls-Windsor, or anywhere for that matter with the car, I check
the weather first. We don't like to get surprised by very bad weather
when we are going to a place more than one hour ahead. We had that one
time when we only went to Springdale, a bad snowstorm!
The Weather-network on television had told me that there was no
expectation of bad weather. No warning for whatever highway. Normal and
good conditions! I loved them!
Loved! Past tense! Don't love them anymore!
Beautiful, in one word beautiful weather. Two words actually! Sun
shining, birds whistling, blue sky as far as the eye could see, nothing,
at least not the weather could harm us.
When we left Springdale it was around 4 or so. We were hungry, and
stopped by a place in Springdale to get something to eat. I can't get in
there, so Patsy went. When she came back with food, she felt something
on her cheek. Something hard and cold she told me.
I said: "Oh, nothing to it, it is going to rain!" And Patsy: "Not rain!
Hail or freezing rain, or snow!"
And before she was in the car, did back out the van and hit the road,
the road was one big ice-track, and you couldn't see 2 or 3 meter! Walls
of ice were coming down, or maybe rain, which was turned over in ice as
soon as it touched the cold street!
We drove home, however Patsy doesn't like to drive in these conditions!
We drove home with the incredible speed of 10, or maybe even 20
kilometers an hour, and that was speeding, in my idea. The whole road to
Robert's Arm was hazardous, which was proven by the fact only one car
passed us, and the rest of them didn't dare to drive faster either!
Every meter of the highway was a bullet in a gun playing Russian
Roulette! But the Weather-network had told me, and all other users of
the roads: Nothing to fear! The Weather-network went there before you,
and all is clear!
Nowadays I check not only the Weather-network, but also other stations.
But they don't differ that much.
In the Netherlands I was used to weather-prediction that was more or
less accurate. In Canada I am getting used to weather-prediction that I
have to delay, if I use the word right. When they say: On Sunday
blizzards on Newfoundland, well, almost get your swimming-gear, and
hurry to a nearby pool or little stream, because the weather will be
terrific, in the good sense of the word. Two days later however you will
exactly get the weather they predicted for Sunday. Blizzards on Sunday
was really: Nice weather.
But today, Tuesday, man oh man! The snow is horizontal in the air, there
is already about 6, 8 inches of snow, and I don't take any chance of
going out in my wheelchair!
Later on I will see what they predict for today! Then I know at least
what we possibly can expect for Thursday!
The Weather Network! Or every other weather-station for that matter! How
do you guys do that? Still going to a farmer to ask for the weather, who
sticks his finger in the air, saying: "Yep! Rain in one hour!" Or: "the
rabbit is chasing the fox instead of the other way around, so it is
insanely warm!"
I think not! When you would do that you would predict the weather ten
times better than you do now! The only fact in your advantage is that
you people do this with a smile! So maybe it is not even serious! Inform
me, please?
So: the Netherlands, a very small country. But go to the K.N.M.I. (Royal
Dutch Meteorological Institute), and they hardly have one prediction
wrong. Ask the KNMI how they do it, Weather-network, and maybe they
grant you a look in their kitchen! And you can tell me the same I told
you! The Netherlands are so small, and even Newfoundland is so big by
itsself! That shouldn't make so much difference! A few times a wrong
prediction? Alá, is always possible, but never ever a good prediction,
at least not for Newfoundland, is that your policy???
Rob
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Can I ask for your attention, maybe one minute? I have started a ~new
~newsletter as well. Half of my life I am experimenting with several
recipes, from all parts of the world. And I am still here, while I
tested every other recipe!!! If you're interested, just -subscribe!
Hehe! There will be recipes of my own, and of unknown cooks.
-F-R-E-E- -news-letter- *Rob's Cooking Pot*
Rob's cooking pot will have old & new recipes to tempt even the pickiest
people, from the very old, to the very new, & dishes from various
cultures & from my own cooking pot! hehe
Tips will be tops on this list as well. Come join us! Rob
<a href=" http://www.topica.com/lists/robscookingpot ">aol link</a>
PS hurry...you already missed a few recipes! Hehe but you can read it on
Topica:) http://www.topica.com/lists/robscookingpot
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W!N "Sterling Silver Chain" for December!
*Join "Live & Let Live" to be !entered! ( International )
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Pass our news along to your friends who might enjoy it!
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Take care of yourselves and your loved ones!
And of course, before closing down, to all my readers and their family's
a very Merry Christmas. May the Spirit of Christmas dwell with you
during this holiday-season, in which we celebrate the birth of Jesus
Christ.
Rob
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