OT: Wholly OT Rant!
Karen C - California
cleaning service that will tidy up for me.
They will dust the clutter, but they will not even push a bag of yarn out of
the way to mop the floor under it, much less actually put the clutter away. At
any price.
Apparently, the only way to have anyone de-clutter the place is to hire a
full-time live-in housekeeper who answers only to me. And obviously, with the
limited income I'm able to earn in an hour or two a day, that solution is
waaaay too expensive for me. So, until I can catch DBF between work and school
and make him do it, the place stays looking like nothing's been put away for a
year (which is pretty much the case). He's been busy from 8 AM (first class)
till after midnight (when he gets off work during the semester), which doesn't
leave much time for helping me with grocery shopping, much less non-essentials
like putting my toys away.
--
Finished 6/12/01 - June Gemstone Dragon
WIP: getting my health back, Calif Sampler, Holiday Snowglobe
Paralegal - Editor - Researcher
http://www.craft-searcher.com/kmc/index.html
Don't risk your on-line privileges! I report all Spam.
Sharon Crescent
someone who would like some of your stitching or maybe someone who needs
some desktop publishing, in trade for tidying up your abode.
The possiblities are endless! :)
Sharon C
Tucson, AZ
who barters with her 11 years old DD to help her clean :)
"Cyn" <use...@technomom.com> wrote in message
news:j1s6jts00g7gomsc8...@News.CIS.DFN.DE...
> -----BEGIN PGP SIGNED MESSAGE-----
>
> On 22 Jun 2001 15:45:57 GMT, kmc...@aol.com.LuvXS (Karen C -
> California) wrote:
>
> >Apparently, the only way to have anyone de-clutter the place is to
> >hire a full-time live-in housekeeper who answers only to me. And
> >obviously, with the
>
> Karen, could you barter services of some sort with an acquaintance
> who could de-clutter for you?
>
> Cyn
>
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>
> --
> http://www.technomom.com/
> http://www.themestream.com/articles/324433.html
>
> Light is faster than sound, which is why
> some folks appear bright before they speak.
>
Karen C - California
My acquaintances in this town fall into two categories: full-time employed
(many of whom have a cleaning lady of their own) and too old to be of much use.
The first doctor suggested that rather than badgering him that I need to get
into the system to be assigned a personal attendant, I should have one of my
friends move in to care for me, or at least stop by three times a day to fix
meals. I know only a few people well enough to ask those favors, most of whom
work 8:30-5:30 and couldn't get here from their offices, cook, and get back to
work on their lunch hours; most of them also have families who expect them to
be at home getting dinner at 6 PM, not spending an hour taking care of me
before they hit the freeway.
The unemployed split up into three categories: too old and frail to half-carry
me to the bathroom, too old and male to know the first thing about cooking or
cleaning, and Mr. SJ.
SJ is an amateur musician and a professional mooch who has several times since
my divorce suggested that I need a man around the house and he'd be happy to
move in, rent-free of course. I knew from others that once he moved in,
nothing short of dynamite would get him out. His cooking skill is limited to
TV dinners, and I also had my suspicions that he couldn't be trusted around a
half-naked, physically diminished woman, so I've continued to reject his offers
of "help", because I'd just gotten rid of a man who expected me to pay all the
household bills.
Sharon Crescent
more like, "I'll produce this for you if you tidy my house?
Everyone has value to everyone else, it's just a matter of putting it to
work.
Sharon C
Tucson, AZ
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010622191730...@ng-bd1.aol.com...
Jolene
"Karen C - California" <kmc...@aol.com.LuvXS> wrote
>
get
> into the system to be assigned a personal attendant, I should have one of
my
> friends move in to care for me, or at least stop by three times a day to
fix
> meals. I know only a few people well enough to ask those favors, >
Karen, is it possible that by "getting into the system to be assigned a
personal attendant" your doctor meant you should be getting qualified for a
PCA (personal care attendant) through a county agency? In that case, it
would definitely not be a friend, but a trained professional working for an
agency who would come to attend to you. Your use of the word 'assigned'
leads me to believe this is what the doctor meant. Once you're in the
system, you shouldn't and wouldn't need to ask friends for these favors, a
paid professional would do it.
At least that's how it works in Minnesota. The extent of the disability
determines the amount of PCA hours for which one is qualified. In your
case, it sounds like you need a lot of help across the board. PCA's here go
through extensive training so they can handle feeding tubes, toileting, CPR,
administering meds, as well as the shopping or housework types of things.
You, the client, would decide what tasks the PCA would do. In most cases
the county also assigns a social worker to administer and oversee the
situation. That is where the 'system' helps. Sometimes it takes a long
time to get into it. I have a friend who has just received her disability
for fibromyalgia as she can no longer run her day care. I hope you can work
through this soon. Jolene
Karen C - California
>personal attendant" your doctor meant you should be getting qualified for a
>PCA (personal care attendant) through a county agency?
Yes. Unfortunately, without a doctor's backing, I'm not qualified for any of
the benefits of being disabled, such as discounted bus fare, access to
Paratransit, etc. until SSD makes a decision independent of the doctors. I
could get some things just with a doctor's letter, but, as mentioned, my doctor
believes that without a single abnormal blood test, there's no reason for me to
be considered disabled.
Karen C - California
>work.
So far, I haven't found anything to persuade my girlfriends to even come by to
sit down and chat for a while. They're "much too busy", even when I promise
them my super-deluxe brownies. If I can't get them to make time for a visit,
they sure aren't going to find time to come do housework!
What I have of value is a shoulder to cry on, and as long as everyone's life is
going well, they don't need me around. Eventually, someone will have a crisis
and will be sitting on my couch sobbing her eyes out four nights a week.
Sharon Crescent
don't and I'm sorry, because it's in my nature to help those who can't do it
themselves.
I work 40 plus hours a week, have a husband and 11 yr old DD to take care of
, a house to run and still find time to visit friends of the family in a
nursing home every Saturday morning, volunteer in my church's children's
ministry on Weds. evening and Sunday mornings, make cards with some other
friends from church on Tuesday evenings for that weeks birthdays,
sympathies, get wells, etc., and take dinner to a sick friend 2 nights a
week. Am I tired? Of course. Will I stop doing it? Not on your life,
because the pleasure that I see on the faces of those that I've helped is
worth its weight in gold.
Like I said, if I lived near you, you'd simply be another one of my
"projects" as my husband says. :)
Feel free to give this message to your "busy" friends. Maybe it'll "free"
up a little time. I'm not being vindictive, I'm just being honest.
Sharon C
Tucson, AZ
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010622230711...@ng-bd1.aol.com...
Karen C - California
>up a little time. I'm not being vindictive, I'm just being honest.
I've already given them several messages from myself which were brutally
honest, which confirmed DBF's suspicion that they weren't "friends", they're
"users".
Hedonism/self-centeredness does seem to be a Native Californian trait, as I've
frequently run into the same "too busy" argument trying to get volunteers for
the library and symphony.
The co-president of the symphony volunteer group works full-time, plus
frequently gives presentations for her work in the evenings, at that time had 2
sons under age 8, a 3000-square foot home, and no hired help; she was my
recruiting "ace in the hole", and people who did far less than she did
nonetheless argued with her that they were "too busy" to volunteer even an hour
a month. As she frequently observed, "too busy" is polite for "can't be
bothered" or "disinterested in helping anyone except myself".
Which seems to be true of my "friends", too ... as long as I'm accompanying
them to what they want to do (I hate loud nightclubs!), I'm fun to have around,
but when I suggest they try something I enjoy, they're not interested in
spending time with me. (The morning after the Symphony's rollicking "Jeans &
Beer" series St. Pat's concert/party, I heard a lot of "I wish I'd been there",
from people I'd invited and even offered to get them in free. It became clear
that "too busy" was a relative term ... they'd have made time if they thought
it would be that much fun.)
Watabod
Having lived all over (East and West Coast and the South) Californians were the
most friendly and giving people I have encountered. I was in Southern CA --
maybe that is it? I was involved in a few volunteer groups and the schools and
we always had people helping out.
Those that are busy should be given a break -- maybe they are committed to
other things. I remember many times I had to turn down requests to be on a
committee because I truly had no time left.
Last resort I would think they were not true friends.
Donna
There are three kinds of people in the world........
those who can count and those who can't.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Karen C - California
>other things
In the case of one of these people, she's committed to never missing an episode
of Melrose or 90210. To the best of my knowledge, that's the only commitment
she has other than being at work from 8:30-5. She's single, her mother's
deceased, her father lives out of town, no children, no volunteer work, no
night school, but she still "never has time" for me unless she needs something
from me.
.>Having lived all over (East and West Coast and the South) Californians were
>the
>most friendly and giving people
I've been on numerous committees in two places in California, and those
committees are always predominantly non-natives. AFAIK, native-born
Californians are still in the majority, yet it's been rare for any board or
committee to have more than 10-20% native Californians, and those mostly have
significant ties to other states/countries (e.g., one group's president who was
born in California but raised in a typical Chinese home, insulated from
American attitudes).
I believe, in 20 years of volunteering in California, she's the only president
I've worked under who was born in California. I've worked with a number of
board presidents who were born in the midwest.
At a getting to know you session at one board meeting, we went around the table
and we all came from elsewhere. Two of us were married to natives, neither of
whom did any volunteer work, and who made fun of us for doing so. That was
when the idea germinated and we (busy busy people all) went to our numerous
other committee meetings and played the same getting to know you game with
similar results.
By and large, the native-borns were there because they wanted something; e.g.,
one who was never interested in doing volunteer work until he hatched the idea
that he could earn more money as governor than in his usual job. He did it for
the campaign credentials ("Friend of The Neighborhood", "committee to improve
street lighting") and the connections (other members of the group were on City
Council and in the state legislature, and the mayor visited us from time to
time), and not because he had any deep desire to be of service to others.
No, he has not yet been elected to any statewide office.
Jeri
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
> In the case of one of these people, she's committed to never missing an
episode
> of Melrose or 90210. To the best of my knowledge, that's the only
commitment
> she has other than being at work from 8:30-5. She's single, her mother's
> deceased, her father lives out of town, no children, no volunteer work, no
> night school, but she still "never has time" for me unless she needs
something
> from me.
<snip>
Karen,
You can't be treated like a doormat unless you allow it. If you feel she
doesn't have time for you unless she needs something, next time she needs
something say no. If you can't or don't want to say no, for whatever reason,
then you really can't complain.
As for your friends who don't have the time to come in and help you clean up
the clutter, who knows, maybe they think your priorities are in the wrong
order.
--
Jeri
WIP: Southwest Blend - Dimensions Gold Collection Petites
-slowest stitcher in western NY
Watabod
I just hate to see a generalization about people. There are good people born
in CA :)
Karen -- I just had a brainstorm. Now -- take no offense -- I don't know your
age -- but how about "senior services" in your area. I used to do a lot with
Laguna Hills Senior Services and Meals on Wheels. If you are a senior citizen
I am sure they would help.
If not a senior -- how about the scouts? I also worked A LOT of hours with the
Boy Scouts and the Girl Scouts (many of my peers here were natives :) These
two groups are service organizations and the kids are advanced and earn badges
based on community service (among other things). I am sure if you contacted
the local scout groups you would have more help than needed -- AND the kids
would LOVE some of your brownies you mentioned!
If you are in the Orange County area -- let me know -- I think I still have a
few contacts at the Saddleback District ;)
Writer928
>So far, I haven't found anything to persuade my girlfriends to even come by
>to
>sit down and chat for a while. They're "much too busy", even when I promise
>them my super-deluxe brownies.
Have you tried to find a support group in your area or online? If you haven't,
I would really urge you to do so. One thing I have learned from living with
chronic colitis for the past eight years is that most people just don't want to
hear about it. My family and friends are caring people but they don't want to
hear about the nights I spend alone in the bathroom or how I have slept on the
bathroom floor because I was too weak to get myself back to bed. I stopped
talking about it with people from work, even when they ask some mornings why I
look so pale (I've been up all night on the toilet). But I have found people
online who do understand and those are the people I tell my miserable stories
to, and I read about theirs, and we comfort each other and even make fun of
ourselves and our endless "bathroom visits." Not only that, but these groups
are a good way to network and possibly it could be a way for you to find a
person or service that will help you with your housework or give you tips on
dealing with your health situation. I offer this only in a friendly way because
as a "lifer" in the chronic disease state myself, I know you won't find the
support you need and deserve here on RCTN. There are people who understand and
can help, you just need to find them.
Laura
Karen C - California
The one in my area meets way out in the suburbs where the buses don't go, and
meets during the workday when I can't get DBF to drive me.
>most people just don't want to
>hear about it
My point was that my girlfriends don't want to come over for a friendly visit
to talk about *anything*, not that they're fed up hearing about my health
problems. I have plenty of other interests to talk about.
One gal has been telling me since I bought the house in 1997 that she wants to
come over and see it, but despite being single with no dependants, and driving
to/from work on the freeway a few blocks away, she's never made it, even for
the 30-second tour. She has an excuse for every time-specific invitation, and
every non-specific invitation gets "I'll call and let you know when's a good
day next week".
Jolene
She's giving you a very strong message (since 1997) that you are not a
priority for her. Your energy needs to be conserved for people who care.
I'm sure everyone here has had a friendship that regrettably has gone by the
wayside. I know I have.
You don't need to waste time on someone who treats you indifferently and
has made it clear she is not interested in you. Just my opinion. Jolene
"Karen C - California" >
Amy B.
California) wrote:
>>Have you tried to find a support group in your area
>
>The one in my area meets way out in the suburbs where the buses don't go, and
>meets during the workday when I can't get DBF to drive me.
So start a new one that meets at your house! I'm not being faceitous
(sp?) here, I'm serious. I'm having a little trouble of my own
finding a support group for something else that meets on a regular
basis, so I'm getting ready to start my own. You might consider it.
Amy
Sharon Crescent
That's what I was thinking! Great minds and all..
Where in California do you live, Karen?
Sharon c
"Amy B." <akmo...@icok.net> wrote in message
news:3b376924...@news-server.stny.rr.com...
Karen C - California
I have considered it, but after a year of not having the energy to clean house,
there's nowhere to sit in the living room except my spot on the couch, and the
narrow pathway leading to it. There are birthday and Christmas gifts on the
love seat that I haven't put away because it requires a trip to the basement,
things on the floor that should go in the upper reaches of the closet which
haven't gotten there because I'm too dizzy to safely stand on the ladder, piles
of mail-ordered stash that should go into the boxes that I'm not up to
lifting....
During the school year, DBF is too busy to help out with my housework; he
squeezes out time to help me with grocery shopping, which is far more necessary
to my survival than a tidy house. I'm hoping that over the summer I can get a
couple hours a week of helping me stash things so that I do have a place for
company to sit and can start my own group. Though it's a very small house, so
even packed like sardines I couldn't fit more than 6-8 people in the living
room.
Further complicating matters, I have a very steep front staircase which the
historical preservationists don't want a proper safety railing on. I'm sure
many of my fellow patients would take one look at that staircase and decide
it's not worth the effort to get up it; I know there are days when I consider
going out and change my mind because I'm not steady enough on my feet to risk
falling down an 8-foot concrete staircase, or doubt I have enough energy to get
back up it after I've gone down.
Being an older house, the doorways are too narrow for either wheelchairs or
walkers, and many patients use them.
Karen C - California
Sacramento.
The support group that met at the hospital near home was rendered homeless by a
change in meeting room policy (which was fine with me, because it wasn't a
*support* group -- it was "listen to me whine".)
Very emotionally draining to spend two hours with people who drag every
conversation around to how awful they feel and aren't really interested in
hearing about how *you* feel.
I simply didn't get enough helpful information to make it worthwhile to expend
my limited energy coping with depressed, self-centered people who didn't think
support needed to go both ways.
They also made me feel guilty, like I wasn't sick enough to be one of them,
because I was able to accomplish things. (Translation: I wasn't severely
depressed like the rest of them, so I looked at my stitching and thought "maybe
I can do a few stitches today", while they looked at their knitting and said "I
can't knit for hours like I used to, so why bother even picking it up?")
The group has reorganized in a suburb about 20 miles out -- the bus doesn't go
there, and I'm not in a position to spend $100 round trip on cab fare. The
organizer didn't seem particularly interested in helping me find someone to
car-pool with, nor do I trust the driving of someone dealing with the confusion
and attention deficit of this illness!
Sharon Crescent
see if they have discounted or even free transportation programs?
smc
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010625131217...@ng-bk1.aol.com...
Amy B.
California) wrote:
>>So start a new one that meets at your house!
<snipped lots of reasons why it can't be at your house>
So start a new one that meets at a location you can easily get to!
:-)
Amy
Amy B.
California) wrote:
>The support group that met at the hospital near home was rendered homeless by a
>change in meeting room policy (which was fine with me, because it wasn't a
>*support* group -- it was "listen to me whine".)
>
>Very emotionally draining to spend two hours with people who drag every
>conversation around to how awful they feel and aren't really interested in
>hearing about how *you* feel.
Sometimes, when people first seek out support, that's the place
they're coming from. They're so glad to be around people who
understand what they're going through that they have to "unload"
everything. It sounds as if maybe the support group needed to have
more people who could do some actual supporting. (Usually this is
someone who has "come out the other side," but I suppose in this case
that might not be possible? Perhaps a counselor or nurse?)
You have to understand that very few people see a listing for a
support group and think, "Oh, good, I'll go and give others some
support," they see it and think, "Oh, thank God! Maybe someone can
give me some support!"
Amy
Karen C - California
>see if they have discounted or even free transportation programs?
We have Paratransit, but my doctor refuses to sign anything containing the word
"disabled" until he sees a positive blood test result, and without his
signature, I don't qualify.
Lollee has encouraged me to find a new doctor who understands that there's no
blood test for what I have, so maybe I'll have more luck qualifying for
Paratransit and other services with a new doctor.
Karen C - California
>they're coming from. They're so glad to be around people who
>understand what they're going through that they have to "unload"
>everything.
Yes, but some of these people had been in the group for five years and still
felt the need to unload on anyone who wasn't fast enough to escape.
As I said, I didn't get enough helpful information to make it worthwhile to use
my limited energy for something neither enjoyable nor educational. I went to
several meetings, and only one had a guest speaker who talked about new
treatment possibilities. The rest of the meetings were just two hours of
"let's go around the circle and whine at each other".
With my Pollyanna attitude, I was insulted and heaped with guilt when I
refused to whine and insisted on looking at the bright side. Just the fact
that I was able to get out of bed and get to the meeting made it a good day;
I'd long since adjusted to the idea that my old lifestyle wasn't going to come
back and that mourning it wasn't going to help matters.
Allow me to be incredibly snide for a moment ... most of these women did not
need a CFS support group so much as they needed one for major depression, but
there's less social stigma to having CFS, so they got the rest of us depressed.
I came home beating up on myself because I really couldn't do anything to help
them, hating myself for lacking the scientific talent to find a cure for them.
Right after one of those meetings, I got a call from my friend with lupus, who
got me *out* of the support group, by reminding me that some people thrive on
sympathy. If a cure was found, they'd find something else in life to whine
about non-stop. She reminded me that I had her for support, and it wasn't
helping me one bit to come home emotionally drained by people who luxuriated in
making others feel their pain.
Cross Stitch
find out the name of their Doctor and make an appointment. If no, then
you signed up for the wrong group.
Karen C - California
>find out the name of their Doctor
It was a CFS group. The doctor most of them were seeing was in San Francisco
and does not take insurance. Physically, I cannot handle a trip to SF (and
have no one who could drive me on a weekday), and financially, I lack the
working husband who could pay the bill. Even back then, he was charging $250
for a short follow-up visit; that's more than I've earned in a whole month any
time in recent memory, and I'm sure his fees have gone up substantially since
the early 1990s.
As I have said repeatedly, there is a specialist very close to my house, who
will only see me on referral from a member of his medical group. My current
doctor refuses to refer me until he sees a positive blood test (which is
impossible, because there is no blood test for this illness).
I need to find some other doctor in that medical group who is accepting new
patients, is a little more open-minded about illnesses there's no test for, and
is easy for me to get to without spending hours on buses or megabucks on cab
fare. Unfortunately, I'm having a little difficulty finding someone who meets
all my criteria.
Karen C - California
meetings somewhere other than home!
Unfortunately, this neighborhood is full of small stores, so there aren't a lot
of available meeting places other than churches. And I have a phobia about
churches (some of you have heard the whole story and understand why, the rest
of you will have to make do with, succinctly, the church screwed me royally,
and since I have no intention of ever going to church again, it's not worth
getting psychotherapy to overcome my phobia). I was in the church across the
street for a neighborhood meeting last year and I lasted only 10 minutes before
I had to leave.
I'll have to see whether the restaurants have a minimum order to use their
facilities for meetings; on the limited incomes most patients have, I hate to
tell them it's going to cost them $5 to attend a meeting. Many are on
restrictive diets, so wouldn't eat whatever they'd be forced to order.
Thanks for the suggestion!
Cross Stitch
>It was a CFS group. The doctor most of
>them were seeing was in San Francisco >and does not take insurance.
Then who were the rest of them seeing? You said "most". Get on the
phone and call various Doctors and find out if they handle or recognize
CFS. This can't be that obscure that only one Doctor in California
recognizes the disease or symptoms. Call your local TV Station and ask
if they know how a person w/o funds can get assistance. What about
assistance from those lawyer friends who thought you were the greatest
Paralegal/Senior Secretary/Office Manager? You have only tapped one
resource and that is your friends at RCTN, so you can tell them how bad
off you are. It's called a "pity pot".
There is no one who can help you but you, yourself. If it was me, I'd
sell my stash on eBay if I needed the money to get to a doctor for a
diagnosis. The longer you wallow in your pity, the longer it will be
before you receive your goal of SSD.
>I need to find some other doctor in that
>medical group who is accepting new
>patients, is a little more open-minded
>about illnesses there's no test for, and is
>easy for me to get to without spending
>hours on buses or megabucks on cab
>fare. Unfortunately, I'm having a little
>difficulty finding someone who meets all
>my criteria.
Does he need to have blonde or dark hair? Forget all your criteria and
get yourself diagnosed and then get him to refer your case to a Doctor
in your area.
JanM/Texas
That Funky Chick
muttered something like:
>I'll have to see whether the restaurants have a minimum order to use their
>facilities for meetings; on the limited incomes most patients have, I hate to
>tell them it's going to cost them $5 to attend a meeting. Many are on
>restrictive diets, so wouldn't eat whatever they'd be forced to order.
They may not need a minimum order, if you arrange the group to meet during
their off-hours. Say, perhaps a dinner restaurant that doesn't open until
six; normally restaurants open an hour or two before they start serving,
and if your group doesn't make a mess of the place they may be willing to
let you come in early while they're setting up.
-Bertha
--
24 beers in a case, 24 hours in a day ... coincidence?
Karen C - California
compassionately, and said "well, then, we'll just book you for a second
opinion". I was given the phone number for internal medicine and infectious
disease, so I'm not sure whether the doctor I was booked with is an internist
(who'll refer me) or the infectious disease specialist.
Either way, I'm finally getting somewhere with this mess. As a second opinion,
they were able to set an appointment so quickly that I wonder whether my
medical records will make it before I do. Once that's taken care of, then I'll
see about changing my primary doctor to a woman who'll believe me that I'm not
lazy or a hypochondriac.
StitchingCEO
<ani...@animaux.net0> writes:
> I do have a great deal of help from my husband, and he
>is never too busy doing anything to clean the house
You're a lot luckier than Karen who doesn't have any help around the house.
Maybe that's why yours is clean and hers isn't because you have a helpful
husband and she only has two cats.
StitchingCEO
(Karen C - California) writes:
>Some understanding angel in Medical Center Administration cooed
>compassionately, and said "well, then, we'll just book you for a second
>opinion".
See? You make enough phone calls and talk to enough people and someone's going
to believe you.
I'm glad you got the appointment. Let us know how it went.
StitchingCEO
<ani...@animaux.net0> writes:
>My house is clean, my things are in order.
You've also bragged about spending a whole morning gardening. If Karen had
that kind of energy her house would be clean too. She bragged to me last week
that she pulled weeds for about three minutes before she had to go inside and
lay down.
Just imagine being so sick that you're bragging about having three minutes of
energy?
StitchingCEO
<ani...@animaux.net0> writes:
>
>A doctor who doesn't take insurance?
There are plenty in California. They say its too much hassle to deal with the
paperwork and they're probably right.
>
>>Physically, I cannot handle a trip to SF (and
>>have no one who could drive me on a weekday), and financially, I lack the
>>working husband who could pay the bill. Even back then, he was charging
>$250
>>for a short follow-up visit; that's more than I've earned in a whole month
>any
>>time in recent memory, and I'm sure his fees have gone up substantially
>since
>>the early 1990s.
>
>This is getting very suspicious.
What part is getting suspicius? She doesn't drive. She's not married. The
doctor charges an arm and a leg. All of those sound realistic to me.
StitchingCEO
<regpa...@mn.mediaone.net> writes:
>
>Karen, painful as it is, those kind of 'friends' need to be cut loose.
>She's giving you a very strong message (since 1997) that you are not a
>priority for her.
Unfortunately Karen's been saying this to me about a lot of her friends. When
she called to tell them she was getting divorced they suddenly all got too busy
to spend any time with her. They sob all over her shoulder but don't want to
take a chance on her wanting them to return the favor.
There's only a couple people left in town who bother to call her any more and
they're the ones who want something from her. I swear this gal's got SUCKER
painted on her forehead. The people who called themselves her dearest friends
are all users who were only interested in getting what they could from her and
I don't think there's anyone here who doesn't recognize that Karen's one of the
most generous people around so she didn't think twice about giving to these
users when they were in need.
Lets face it. Right now we're about the only real friends she's got.
StitchingCEO
cst...@webtv.net (Cross Stitch) writes:
>You have only tapped one
>resource and that is your friends at RCTN, so you can tell them how bad
>off you are. It's called a "pity pot".
>
>There is no one who can help you but you, yourself.
I sure hope you never come down with what Karen's got. She's done a lot to
help herself the last year and got nowhere with it.
She had a good doctor who believed she was sick and sent her to a specialist.
The specialist didn't know thing one about Karen's disease and wasn't
interested in learning. Her own doctor was steamed at that attitude and gave
Karen the names of some other specialists. None of them can be bothered to
fill out disability forms. Then her doctor died so she had no one who believed
she was sick except a few of her friends here.
Now she's got a doctor whos only ever seen her sick so he thinks this is normal
for her. She was sick for a year before she saw him the first time and when
she asked if he would fill out the disability forms he figured that was all she
was after was free money. Could you live without your paycheck for a year and
not have getting some income be your top priority?
She's described it to me as like having the flu for a whole year. How would
you like it if you went to your doctor with the flu and he refused to give you
anything for it until you puked in front of him to prove it? That's what she's
up against. She can't show him anything in front of his eyes and he refuses
to believe what she says happens at home.
>Forget all your criteria and
>get yourself diagnosed and then get him to refer your case to a Doctor
>in your area.
Her criteria are a doctor in her area whos accepting new patients and believes
in her illness. She lives in downtown where there are hundreds of doctors so I
don't think there's anything unreasonable in that. I sure as hell wouldn't
want to have to go into San Francisco when I have the flu. Even if you drive
its at least two hours each way from where she lives and its probably three or
four hours if she takes the bus or the train. There is no way she's healthy
enough to be out of bed for as long as it's going to take to get there and have
a complete exam and come home.
Sharon
Sharon (N.B.)
........................................................
victoria wrote:
> on many and all blood tests. My disease will eventually kill me. What I have
> is love of life and I make the energy. I don't sit around in the pity bag. I
> get up, I do, I move, I live. Life is too good to spend all day every day
> complaining about how I can't do anything. I know, and that is, in a word,
> bullshit. Lets not get into a whole big fight now about your...friend.
>
> http://www.freetibet.org
Karen C - California
I wish I could.
So you don't think it's just me being lazy, here's a quote from our own
Heather's website about her experience with CFS (called ME in the UK):
"You have the flu. And a hangover. And you've just run five miles. Now you know
what it feels like to have ME." That is more or less the text of my favourite
poster from Action for ME, and it really does give an idea of what this
appalling, invasive, life-changing illness is like. ME is not just 'feeling
tired', or 'needing a good rest'; it is, in part, an awful bone-weariness and
pain that cannot be cured by sleep, exercise, or drugs, and can be brought on
by something as simple as brushing one's teeth.
http://www.barwickgreen.fsnet.co.uk/meandme.htm
The Association's website says:
"CFIDS is characterized by incapacitating fatigue (experienced as profound
exhaustion and extremely poor stamina) and problems with concentration and
short-term memory. It is also accompanied by flu-like symptoms such as pain in
the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat,
and headache. "
http://www.cfids.org/about-cfids/symptoms.asp
If it were as simple as making the energy, I'd constantly be off doing things;
instead, I find myself cancelling out on fun things like neighborhood pizza
parties and my EGA meeting because I just can't drag myself out of bed no
matter how much I try. Just going to lunch with DBF (who's capable of carrying
me back to the car if need be) can put me in bed for two days to recuperate.
Saying that because someone else's disability allows them to do certain things
means I should be able to do all the things they can, is like a blind person
telling a double-amputee "I can run the Boston Marathon, so can you". All
diseases are different. Mine happens to land me in bed unable to do more than
push buttons on the TV remote.
If my only problem were that I'm too lazy to go to work, then I should be
finishing an MLI every week in all my free time. Instead, I consider myself
lucky when I can get in an hour of stitching spaced out over the day. The
other day, I slept 12 hours overnight, and then another 6 hours of naps during
the day. I *wanted* to watch a movie with DBF, which would have been a lot
more fun, but I couldn't stay awake long enough.
Karen C - California
>Send me the name of just one. I would be very interested to call that
>doctor,
>but I doubt you or anyone will send me that name.
Just last week, someone here directed me to the website of a CFS doctor who
does not take insurance. http://www.drjgoldstein.com/ Click on appointments
and you will read "We do not accept any insurance plans ..."
Since the guy in SF doesn't take insurance, I never bothered to write down his
name. The guy they were recommending locally (who has now retired) did take
insurance; unfortunately, not mine. Since I was in remission at the time,
there was no point in paying full price to see him, and I simply filed away his
name for when I needed him.
Karen C - California
>her and thought that she was the best thing since sliced bread? Surely one
>of
>them can come to her aid in this, no?
Like doctors, lawyers have specialties. SSD is a very very specific specialty.
Two lawyers I have good relationships with told me that they would love to
help me, but an amateur dealing with SSD is a good way to lose your case,
especially dealing with an illness that's hard to prove. I now have an SSD
specialist working on it; however, that's not getting the papers signed for my
private insurance, and I'm still months away from seeing anything from SSD
since we're only in the initial stages.
> It
>is illegal to refuse to do that by any physician, it is a federal law.
Unfortunately, there is no law to require a physician to sign the initial
disability application required by the State of California, or by private
insurance. I turned the first bozo in for it, and both the AMA and the State
office in charge of patient services responded that if the doctor doesn't
believe it's warranted, there's no way to force him to sign.
Since this guy doesn't believe it's possible to have an illness that doesn't
show up on blood tests, all he has to say is that he doesn't believe I'm sick,
and he's off the hook. Any further attempt on my part to badger him to sign
it, and he can claim I'm trying to get him to commit fraud by signing a false
document.
So, off I go to another doctor, and hope that this one knows enough about CFS
to know that the sole CDC criteria are (1) six months duration and (2) no
positive blood tests for any other disease, which means that this doctor's
statement to SSD that I'm not sick because all blood tests are negative is all
I need for the diagnosis to be made.
Cross Stitch
<snip>
>The people who called themselves her
>dearest friends are all users who were
>only interested in getting what they could >from her and I don't think
there's anyone
>here who doesn't recognize that Karen's
>one of the most generous people around
>so she didn't think twice about giving to
>these users when they were in need.
>Lets face it. Right now we're about the
>only real friends she's got.
Are you a friend who will go to Karen's house and clean it up for her?
Just an idea! Or do you have as many excuses as she can come up with?
JanM/Texas
Lollee Roberts
<ani...@animaux.net0> writes:
>
>It is not a choice. When SSD sends papers out, they have to fill them out.
>It
>is illegal to refuse to do that by any physician, it is a federal law.
>
This hasn't been my experience. When my husband was trying to get disability he
was told several times "I don't do Social Security disability." I do know
several doctors locally who do not accept insurance. They are on no HMO or PPO
networks and if you have the old fashioned insurance (fee for service) they
make you file your own and pay them up front. These doctors are usually
specialists and often in high demand, which is why they can pull that stunt.
I'm glad you were able to get SSD. My DH was not, although he is certainly
disabled, and with something that shows up on an MRI. We heard recently about
pedophiles qualifying as disabled due to mental defect and collecting SSD,
which royally chapped both our b^tts.
Lollee
StitchingCEO
I own a construction company and this is my busy season when I sometimes work 4
AM to 11 PM and have meetings most weekends but I will do it for her during
rainy season if she still needs me to.
I don't live in the same town as Karen. I live a couple counties over.
Driving up to her place in rush hour traffic would take 2-3 hours so its not
just a quick visit after work. Sometimes she goes to bed at 7:30 allready so
having me show up at 8 wanting to spend four hours cleaning her house wouldn't
be very welcome!
StitchingCEO
>
Because you've told all of us repeatedly what you have and it isnt what Karen
has. Unles you're going to change your story.
Besides that remark was not directed to you it was directed to
cst...@webtv.net (Cross Stitch) who wrote:
>>You have only tapped one
>>resource and that is your friends at RCTN, so you can tell them how bad
>>off you are. It's called a "pity pot".
>>
>>There is no one who can help you but you, yourself.
and I answered:
>I sure hope you never come down with what >Karen's got.
Then you wrote
> I get disability. Have for over 17 years.
Then you've been sick about as long as Karen but she went back to work after
she went into remission. If youre healthy enough to do heavy manual labor of
gardening for hours then why can't you work answering a telephone somehwere
when your flare up is over? Or maybe you're the one whos too lazy to work?
Watabod
>does not take insurance. http://www.drjgoldstein.com/ Click on appointments
>and you will read "We do not accept any insurance plans ..."
Karen -- it looks like they will not file for you. Perhaps the angle you
should take is contacting your insurance provider to see what they will cover.
This guy is at Disneyland anyway -- you would have to fly to his office. I am
familiar with the street he is on.
From reading this site -- he would take a credit card and you could file your
insurance and if your works as the state mandates -- you should have
reimbursement prior to the credit card statement arriving.
And another thought -- I know I have missed plenty on this subject, have you
ever truly been dianosed with this? It could be any number of ailments. My
MIL just went through a couple years of tests to finally find she has Lupus and
Rheumatoid Arthritis -- and one other that I can't even remember the name of --
all auto-immune illnesses.
Donna
There are three kinds of people in the world........
those who can count and those who can't.
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
The Sarky Witch
the incompetent boobs who take every insurance too... Okay, maybe I'm being a
little too hard on the yobbo I'm fighting with.
>From: stitch...@aol.com
>
>In article <qjafjt8ppk3hs4qio...@4ax.com>, victoria
><ani...@animaux.net0> writes:
>
>>
>>A doctor who doesn't take insurance?
>
>There are plenty in California. They say its too much hassle to deal with
>the
>paperwork and they're probably right.
Marci -- Brooklyn, New York (lose "myspouse" to reply)
"Anything less than two karats is a 'friendship' ring."
Cross Stitch
>I own a construction company and this is >my busy season when I
sometimes work
>4 AM to 11 PM and have meetings most
>weekends but I will do it for her during
>rainy season if she still needs me to.
>I don't live in the same town as Karen. I
>live a couple counties over. Driving up to >her place in rush hour
traffic would take
>2-3 hours so its not just a quick visit after >work. Sometimes she goes
to bed at
>7:30 allready so having me show up at 8
>wanting to spend four hours cleaning her
>house wouldn't be very welcome!
How about picking up the phone on a rainy day and doing it? Where were
you when she was posting about having no friends? If I were you, I
would have been insulted that she didn't exclude me from all of the
others who have let her down.
Oh, I know, you'll have another excuse to those questions. People like
you and Karen are filled with excuses. No action.
Just excuses.
JanM/Texas
Karen C - California
>ever truly been dianosed with this?
I was diagnosed by a specialist in 1988, which is why I'm so steamed that I'm
having the same symptoms as last time and they're making me prove all over
again that it's the same thing. I've never seen anyone with any other illness
have to re-prove their diagnosis when they see a new doctor; it's just taken as
fact.
Combine this annoyance with the hassle of having to find a new PCP while
dreadfully ill, and having two doctors fail to tell me up front that they don't
know diddly-squat about my illness so they can drag me through months of hope
(and medical bills) before telling me they don't believe there is such a
thing.....
>you could file your
>insurance
Assuming that you have one of the top-notch plans that allows you to see any
doctor. I last had one of those plans about 15 years ago. Most insurance
plans these days will only reimburse you for seeing a doctor on their list, and
doctors who do not take insurance aren't on any insurer's approved list.
Watabod
>accept insurance, either.
Hey -- I live in Atlanta too :)
Are you guys saying that these illnesses are not covered by insurance -- or the
just the doc's office prefers to not file the paperwork?
Many docs would rather get paid and let the patient hassle with the paperwork
and frankly if it were me (and I have been in this position with a child once)
I would go to the specialist, pay, then file my own papers -- I would never do
an HMO because I like to make my own choice of doc.
The best place to start on any illness is with your insurance to see what is
covered and what their requirements for coverage may be so you can meet them
from the get-go and not have a hassle later. Also find out how quickly you can
get reimbursement from them -- so you can feel comfortable charging a visit and
knowing you will be receiving the insurance reimbursement at the time you get
the charge card statement.
Karen C - California
>>Unfortunately, there is no law to require a physician to sign the initial
>>disability application required by the State of California, or by private
>>insurance.
>
>But you are leading everyone to believe the doctors won't even touch the
>papers.
The specialist I saw last year refused to sign the application; I complained
and he told the investigators he didn't think it was necessary because I wasn't
sick (he did no blood tests to rule out anything, he just magically "knew").
The second doctor I saw refused to sign the application because he doesn't
believe it's possible to be sick unless you have a positive blood test.
In between, I called a number of other doctors and was told "Doctor never signs
them".
They will not fill the applications out. They will not sign them.
When presented with a request for information from SSD, my current doctor did,
as required by law, respond. He stated that I have no positive blood tests,
therefore, I cannot be sick. (CDC diagnostic criteria for my illness state
"all blood tests are negative", because there is no blood test for what I
have.)
He will not do anything with the state disability application or my private
insurance application until I have a positive blood test for something. If I
have a positive blood test for anything else, then I don't have this.
>You've been told that you are depressed by more
>than one doctor.
I was told I was depressed by two doctors, 13 years apart, both of whom told me
to my face that there's no such disease as CFS; neither of them was a
psychiatrist, they just wanted to get me out of the office. I was told I was
NOT depressed by the SSD psychiatrist and by a friend who's a therapist. Now,
who are you going to believe? The gals with the degrees in Psych, or the guys
with no psych training? I believe the professionals, not the amateurs.
Watabod
Do you guys ever confront these doctors as to why they won't refer you -- this
really makes no sense to me if you are in need of care and one person gets to
be the roadblock! What on earth could be their reasoning????
>I ran a health insurance plan for about five years
I used to be an insurance agent for years before I had my son -- I was licenses
P&C but I did handle some life and health business with another agent in the
office. I know what you mean.
Sally
ani...@animaux.net0 wrote on 6/25/01 7:43 PM:
>>> A doctor who doesn't take insurance?
>>
>> There are plenty in California. They say its too much hassle to deal with
>> the
>> paperwork and they're probably right.
>
> Send me the name of just one. I would be very interested to call that doctor,
> but I doubt you or anyone will send me that name.
Victoria....
When you got on this NG about 8 months ago... your posts were very.. err..
combative... (for lack of a better word).
It seems things have gotten better around here lately.. let's not get back
to all the nastiness.... please.
I don't pretend to be an expert on doctors and insurance.. but I (and I'm
sure many people in this NG) know these issues exist.. in a big way.
One good friend here at my shop has been battling breast cancer for the last
year or so... and some related side effects of tomixifen. Just about two
weeks ago, she tried to make an appointment with her oncologist that she has
been using since the beginning, and the gal on the other end of the phone
said that the doctor no longer takes her insurance.. and did she "still want
to make the appointment and pay cash?" I suppose you'd like to verify that
story as well?
The insurance for my daughter changes every year.. and I have to scramble
sometimes to find hospitals and specialists that take her particular
insurance du jour.
You try to come off like you have this great love of life..wonderful
relationship with hubby... and a secure financial situation... but then you
still come off with all this bitterness.... it's not consistent. I
sincerely empathize with you in that you have your own health concerns.. but
to me.. it seems from your own experience, you could have a little more
heart for someone else that maybe has it worse than you.
Take your same illness without any emotional or financial support around
you.. would you still have your same self proclaimed great attitude?
Just because you have "a more serious illness" than Karen's (in your mind)..
doesn't mean that her problems are quite different to deal with.
Someone dying of cancer probably has more energy than Karen.. because the
nature of that illness isn't the same as Karen's. It's just really unfair
to judge Karen's situation compared to your own.
I would just think you could drop the bitter attitude a little more
often.... or at the very least... blow by the posts and save your comments.
Sincerely,
Sally
K Polikoff
Which is it? You need a 'husband' to be financially capable OR you are
pro-choice and pro-woman and all that good stuff?
This is the problem - this is why people do come to see you... you drain
every nerve and minute of patience they may have....especially if they have
worked all day, had to fight traffic and then spend what amounts to
purgatory at your house. I wouldn't do it for ANYTHING, and I am VERY
giving... you can ask any of my friends... course they are working at the
moment...
Carry on...
Kristal
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010625170649...@ng-fz1.aol.com...
> >Did any of the people in the support group have CFS? If yes, why not
> >find out the name of their Doctor
>
> It was a CFS group. The doctor most of them were seeing was in San
Francisco
> and does not take insurance. Physically, I cannot handle a trip to SF
(and
> have no one who could drive me on a weekday), and financially, I lack the
> working husband who could pay the bill. Even back then, he was charging
$250
> for a short follow-up visit; that's more than I've earned in a whole month
any
> time in recent memory, and I'm sure his fees have gone up substantially
since
> the early 1990s.
>
> As I have said repeatedly, there is a specialist very close to my house,
who
> will only see me on referral from a member of his medical group. My
current
> doctor refuses to refer me until he sees a positive blood test (which is
> impossible, because there is no blood test for this illness).
>
> I need to find some other doctor in that medical group who is accepting
new
> patients, is a little more open-minded about illnesses there's no test
for, and
> is easy for me to get to without spending hours on buses or megabucks on
cab
> fare. Unfortunately, I'm having a little difficulty finding someone who
meets
> all my criteria.
Sally
Stitch at cst...@webtv.net wrote on 6/25/01 10:51 PM:
> Are you a friend who will go to Karen's house and clean it up for her?
> Just an idea! Or do you have as many excuses as she can come up with?
>
> JanM/Texas
Jan....
Before damning someone else....
put your money where your mouth is....
I've got a free airline ticket for **you** to use to go to Sacramento ....
unless of course... you have as many excuses as she can come up with?
Sincere offer....
anyone that can get away for a day or two to go help Karen can use the Delta
frequent flyer voucher I have earned to make the trip.
Just email me.
I am in up to my own eyes trying to keep up with things I need to
accomplish.. but I will gladly share this ticket for the effort.
Sally
Sally
Stitch at cst...@webtv.net wrote on 6/26/01 6:26 AM:
> Oh, I know, you'll have another excuse to those questions. People like
> you and Karen are filled with excuses. No action.
> Just excuses.
>
> JanM/Texas
All right, Jan....
So when are ***you*** gonna do something to help?
Or are you just another all talk, "no action" ?
I'll call Delta and make that reservation for anytime you want.
No Saturday night stays, etc... pretty flexible ticket, AFAIK.
Sally
zphysics
maybe there is one already. This is such a long thread and little ( if any)
about needlework.
:-/
/z.
Sally
zphy...@socal.rr.com wrote on 6/26/01 1:13 PM:
<growl> <G>
and you just added to it.
:)
Sally
---- at least it was marked "OT" <G>
Karen C - California
Yeah, that's the word the nurse practitioner used a couple weeks ago. She
immediately diagnosed lactose intolerance. Since I drink as much as half a
gallon of milk a day, that's obviously *not* the problem, or I'd be in pain
every single day. She went through several other possibilities, all of which I
had proven reasons why it couldn't be that, either.
She got immensely annoyed with me when I responded to the last one "check the
test results in my file and THEN tell me that's my problem".
The only prescription she came up with was to take some aspirin and call her in
the morning. At that point, I just knew she'd shove the emesis basin where the
sun don't shine if I contradicted her one more time, that I was told almost 25
years ago never to take aspirin again because they'd given me an ulcer.
"Excuses", in this case, means nothing more than "truths I don't want to hear
because they shoot down my brilliant idea that proves I'm smarter than you".
sash
hot and sticky day for this part of the UK I settled down to RCTN with a
long cool drink.
I downloaded 273 posts: 139 related to breastfeeding and or temper tantrums;
32 to Karen C and her issues; and 19 discussing bruises. I have no problem
with OT posts generally and value the "mix" that we enjoy but 70% is maybe
pushing it.
Sue (UK)
--
WIP: Peace Angel (MLI); Celtic Banner (MLI); Millenium (TW); Peacock
Tapestry (TW)
"zphysics" <zphy...@socal.rr.com> wrote in message
news:a95_6.39$ev.5...@typhoon.we.rr.com...
Karen C - California
determine whether you should seek psychological counseling, or whether
self-help should suffice. If your score is under 64 (of 100), you're to
consider yourself depressed and get help.
I last took the test about two weeks ago, at which time my score was around 80;
I lost points for honestly answering several factual questions (I really am
forgetful, sleep poorly, unable to concentrate, etc.)
The time-honored questions to diagnose depression are the ones I answered with
a resounding no! I am *not* sad, unattractive, worthless, irritable, crying,
moody, suicidal, hate myself, etc.
I know it's tempting to call it depression because *some* of the symptoms are
similar. It also shares symptoms with MS, lupus, AIDS, thyroid, diabetes,
anemia, and a couple dozen other diseases. All of which have been ruled out in
my case. At that point, the doctor has two choices: screw up his nerve and
admit he doesn't know, or put the blame on the patient, "it's all in your
head".
When I was first sick in the 1980s, I left Dr. #1 semi-satisfied with his
explanation that "it's all in your head", until my support structure pushed me
to find a doctor who believed me, the one who ultimately made the diagnosis.
This time, I'm NOT satisfied with "all in your head", because I know it isn't.
I have a diagnosis from a specialist. For the past 14 years, I've had some
level of symptoms every day, and several mild flare-ups; it's only logical and
reasonable to assume that I still have what I was previously diagnosed with.
The PCP who knew me, who saw me for years, fully believed that I was in
relapse, and never questioned that it was the same thing I'd been living with
for over a decade. WIth incredibly bad timing, she died while I was still
looking for a specialist willing to sign a disability form; she would have
referred me to anyone I named, once I had a name. Unfortunately, one office
after another told me "Doctor does not waste time signing disability forms."
I can just picture her slapping these arrogant male doctors around for daring
to make a patient prove an existing diagnosis from a specialist!
Sally
ani...@animaux.net0 wrote on 6/26/01 1:50 PM:
> You can't just give your frequent flyer miles away. The person who accrues
> them
> has to be on the flight. You should check that before you get someone's
> hopes
> up.
Nope. You're wrong.
This ticket *IS* transferrable.
Cross Stitch
I know how to use excuses too. I can't clean her house because my
wheelchair won't fit through the doors of her house.
I am totally exasperated with someone who does nothing about a problem
other than "rant" (her word - not mine) on the newsgroup. I can't
imagine being as sick as she describes and do nothing about it. If I
was that sick, I would find some way to get help. I would call Doctor
Offices listed in the Yellow Pages and ask if that Doctor took CFS
patients. I would contact my local newspaper and ask for their
assistance to find help. I would call the TV stations and ask the same.
They are often aware of professionals who would see her on a sliding
scale. To keep posting every few weeks about the same story gets
tiring. If she reported what she was doing to get help, I'd have no
problem. I would even contribute to a fund to pay for a Doctor bill if
her insurance didn't pay. As it stands, she can't get out of bed some
days, but is capable of going to the Dr. who wouldn't sign the SSD
papers. She can get out of bed when DBF takes her on a picnic for her
birthday. And so on...
Yes, I have been in similar shoes. My son lives with me and has CP. He
is employed but limited with some things. When I went into the
wheelchair, I knew I needed more help than he would be able to give me,
so I got busy. I called Texas and got an apartment in the same complex
as my daughter. We moved from near Chicago to Texas and I drove the
entire way. I didn't wait until I was too weak to help myself and I
never "ranted" on the newsgroup about my trials and tribulations. The
word is "action" - take action and stop making excuses. People on this
group have posed so many alternatives and ideas to Karen, only to a
response of an excuse. I have _never_ read "Good idea, I'm gonna try
that right now".
JanM/Texas
Sally
ani...@animaux.net0 wrote on 6/26/01 1:48 PM:
> On Tue, 26 Jun 2001 11:43:38 -0600, Sally <bead...@rmi.net> wrote:
>
>
>> Victoria....
>>
>> When you got on this NG about 8 months ago... your posts were very.. err..
>> combative... (for lack of a better word).
>
> Try 5 or 6 year ago, not 8 months ago.
Then when I joined this group early last year.. you weren't spouting off..
you blew in last summer or last fall in a big ol' huff.
>
>
>> It seems things have gotten better around here lately.. let's not get back
>> to all the nastiness.... please.
>
> Was I nasty to you? Or to anyone for that matter?
You were. Terribly so... talk of killfiling, etc. Very harsh compared to
the existing tone at that time.
>
>> I don't pretend to be an expert on doctors and insurance.. but I (and I'm
>> sure many people in this NG) know these issues exist.. in a big way.
>
> Maybe. But I don't believe it.
Then wake up and smell the burnt toast. <G>
>
>> One good friend here at my shop has been battling breast cancer for the last
>> year or so... and some related side effects of tomixifen. Just about two
>> weeks ago, she tried to make an appointment with her oncologist that she has
>> been using since the beginning, and the gal on the other end of the phone
>> said that the doctor no longer takes her insurance.. and did she "still want
>> to make the appointment and pay cash?" I suppose you'd like to verify that
>> story as well?
>
> That's different than saying there are doctors who don't take any insurance.
> In
> this case, the doctor changed the insurance company he is associated with. He
> still takes insurance, just not a member of hers any more. Big difference.
Changed? You're assuming something here that is inaccurate. No.. he
*dropped* taking her insurance. And, many doctors are dropping taking
insurances. So, it's quite likely that some doctors are fed up to the
point where they aren't accepting any. The patient is on his own. So - NO
- it's not a big difference.
>
>
>> The insurance for my daughter changes every year.. and I have to scramble
>> sometimes to find hospitals and specialists that take her particular
>> insurance du jour.
>
> But you find them, don't you?
Not necessarily. I just paid cash for an oral surgery last week for her.
Oh yeah.. that's dental.. big difference, I'll bet you'll say. But it's not
any different that doctors dropping insurances.
>
>
>> You try to come off like you have this great love of life..wonderful
>> relationship with hubby... and a secure financial situation... but then you
>> still come off with all this bitterness.... it's not consistent. I
>> sincerely empathize with you in that you have your own health concerns.. but
>> to me.. it seems from your own experience, you could have a little more
>> heart for someone else that maybe has it worse than you.
>
> Who'd worse than me? I have a wonderful marriage, financial security, but ya
> know what, I really do dislike martyrs. I dislike this whole attitude of
> being
> owed something. There's only ONE person on this entire newsgroup who I really
> detest. Don't take it personally. It's not about you.
Victoria.. you've been really harsh on this NG.. and if you "detest" that
person.. why can't you just blow past it all then? While you detest
martyrs.. you have no problem coming across really bitchy yourself quite
often. There are more than a few of us that detest that constant bitching.
>
>
>> Take your same illness without any emotional or financial support around
>> you.. would you still have your same self proclaimed great attitude?
>
> Yes. I was not always married, and I was not always happy, and I certainly
> didn't have the support of family or money. Now I have all. And ya know why?
> Because I made it that way. Life is what you make it.
If you "have it all" then why are you so damned bitter?
>> Someone dying of cancer probably has more energy than Karen.. because the
>> nature of that illness isn't the same as Karen's. It's just really unfair
>> to judge Karen's situation compared to your own.
>
> But you find it superior to judge me? I will react to Karen however I choose
> to
> react.
You don't just "react", you attack. Big difference. And.. I'm not judging
you at all.. I am not judging you nor your illness.. I'm merely observing
all you've said and what you've proclaimed to be - and your bitter attacks
aren't consistent with someone who claims to "have it all".. your words, not
mine.
>
>> I would just think you could drop the bitter attitude a little more
>> often.... or at the very least... blow by the posts and save your comments.
>>
>> Sincerely,
>>
>> Sally
>>
>
> I would suggest you do the same. Oh, it's only good for me. I see.
Victoria.. you have times where you seem to try to get along in this group,
and other times you're downright abrasive. I *do* let a lot of posts go by
without harsh comments... do you? Seems you really like to get in the
middle of it very often... and it's usually quite negative.
Just my observation.
sally
Cross Stitch
who took over the practice?
JanM/Texas
K Polikoff
is that doctors are in their careers to make a living as much as to help
other people - much like teachers or nurses - it is a caring profession -
IMHO - but a PROFESSION nonetheless.
If a doctor does not want to be told what to do by an insurance company or
spend valuable time and/or money paying someone to fill out insurance forms,
then that is HIS/HER choice. It is THEIR business. Doctors are people too
and have the right to run their business any way they see fit - just like
carpenters, nursery operators, attorneys, taxi drivers, store owners....
jeesh...
I have been VERY blessed to have the best medical care available (and I
happen to live in a very 'forward thinking' area where medical care is
relavent - shoot where ANYTHING is relavent for that matter). However,
there have been times when I was 'referred' (either by friends, family or
other professionals). I took the time to call my insurance company and find
out what was necessary for this or that visit to be covered. All 'demands'
were simple to meet and only cost my time (and aggravation factor) by
staying on the phone far longer than I wanted.
The thing that is so annoying with the whole "WHOLLY RANT" post is that
people have made many many suggestions and they are all shot down
IMMEDIATELY as unreachable. One for example was the suggestion that Karen
see a Rheumatologist. Nope... she ends up going to an internist. Now, I
see a very respected Rheumatologist who is board certified and has the
ability to diagnose CFS (EBV), FM or any other syndrome or disease. The
suggestion was from someone that SEES a Rheumatologist (successfully) and I
am almost certain would be able to make a suggestion about someone in CA.
Was the suggestion taken AT ALL? Nope - there is some excuse why a
Rheumatologist can't be seen.
It has been suggested that a call to the TV or Newspaper or even Medicaid be
made - but the poor soul is too sick that she can't even get out of bed -
she needs someone to CARRY HER to the bathroom - yet she can go shopping for
S.E.X. or stitch for charity (of course, with the help of the nail in the
wall above her bed to hold her stitching). She can't afford to have a maid
service come in once a month to keep her home relatively habitable, but has
MAIL ORDER STASH stacked around her house in piles so that 'guests', should
one decided to grace her with their presence, would have no place to sit.
Frankly, if you can't/won't help yourself, why would ANYONE? I battle with
medical problems on a daily basis, many of my friends do, many many people
in the world do - but, again... if you don't help yourself, why SHOULD
anyone?
On a final note - let me suggest that lethargy begets lethargy. If you ARE
exhausted... MOVE... PUSH through it. Get that blood going and MOVE.. MAKE
YOURSELF MOVE... you don't have to like it... just do it...walk through the
pain, wheel through the pain, do whatever you have to do.
UGH... makes me nauseous....
Kristal
"Sally" <bead...@rmi.net> wrote in message
news:B75E4EBA.7319%bead...@rmi.net...
> in article ldphjts37hbcgfi7m...@4ax.com, victoria at
> ani...@animaux.net0 wrote on 6/26/01 1:48 PM:
BIG BIG SNIP
Suzanne
manager at Air Canada (where I used to work), you CAN TRANSFER accrued
air miles. It is done all the time, all you have to do is go through
the correct channels.
Suzanne
On Tue, 26 Jun 2001 19:50:43 GMT, victoria <ani...@animaux.net0>
wrote:
>You can't just give your frequent flyer miles away. The person who accrues them
>has to be on the flight. You should check that before you get someone's hopes
>up.
>
Suzanne
write a note to my insurance company stating that I couldn't work
because my job entailed sitting for 8 hours. So yes some doctors will
refuse to do anything. I saw this same doctor 2 weeks ago to ask if
he could refer me to an arthritic specialist because of constant back
pain (arthritis runs in my family), and he refused saying that it was
all in my head. After I left the office fuming, I pointedly said loud
enough for all the other patients in the waiting room to hear "That is
it! I am not seeing Dr Pugh any longer, he never listens to what I
say. I asked to be referred to a specialist and he refused." Then
the next day I get a call from the specialist for an appointment next
month. So unless you make a stink, if doctors refuse to do anything
for you, there isn't much you can do except find another doctor.
Suzanne
On Tue, 26 Jun 2001 21:06:36 GMT, victoria <ani...@animaux.net0>
wrote:
>On 26 Jun 2001 20:01:32 GMT, kmc...@aol.com.LuvXS (Karen C - California) wrote:
>
>> "Doctor does not waste time signing disability forms."
>
>I do NOT believe anyone would ever say this to you. Period. If it was said,
>post the name and phone number of this physician or email it to me. If you
>don't, I will know it's more nonsense.
>
>
>
>
>http://www.freetibet.org
Denise F. Hayden
"Excuses", in this case, means nothing more than "truths I don't want to
hear
because they shoot down my brilliant idea that proves I'm smarter than you".
For God's sake woman......you know more than all lawyers, doctors and
everyone else. The problem is that you have failed miserably in life and are
angry at the entire world. There isn't anyone on this planet you can't
denigrate. You are truly ill and I can see why you feel so lousy. Anyone
carrying that much anger and rage around HAS to feel bad.
Denise
Indianapolis
Siptah
It depends on how the policyholder (employer) wants oral surgery to be paid.
My unit processes about 65 different policies, and about a third list oral
surgery as covered under dental only, about a third list it as covered under
medical only, and the other third have it split "medical in nature" under
medical and "dental in nature" under dental. "Medical in nature" oral
surgery includes removal of bony impactions (usually wisdom teeth), removal
of cysts/lesions...basically anything that involves actual cutting with a
scapel or needs general anesthesia, "dental in nature" is just about
anything else (perio surgery, tooth scaling, "pulling" a tooth, etc). And
by the way, a root canal is not considered oral surgery, it is a straight up
dental procedure, just like the crown that covers it...although a "major"
procedure, and yes, most dental policies only cover "major" dental
procedures at a low coinsurance rate (usually 50% or 60%) compared to
"minor" procedures (fillings and such, usually covered at 80% or 90%) and
"preventative" (the 2x year exam, cleaning and often x-rays, usually at
100%)
--
Siptah
Columbus, OH
<major snippage>
> >Not necessarily. I just paid cash for an oral surgery last week for her.
>
> Um, that would be dental insurance, not medical.
>
>
> >Oh yeah.. that's dental.. big difference, I'll bet you'll say. But it's
not
> >any different that doctors dropping insurances.
>
> It is when you don't have dental insurance! For petes sake already. I
just had
> a root canal and a crown last week. I have insurance and I had to pay out
400
> dollars out of pocket. Boo hoooo, let me slobber to rctn now.
>
<even more major snippage>
Louise Sugar
week or so...perhaps by then some semblance of sanity will have returned!
"victoria" <ani...@animaux.net0> wrote in message
news:mbuhjtsk0cls7rr1n...@4ax.com...
> On Tue, 26 Jun 2001 14:37:47 -0600, Sally <bead...@rmi.net> wrote:
>
>
> >Then when I joined this group early last year.. you weren't spouting
off..
> >you blew in last summer or last fall in a big ol' huff.
>
> Is that your non-judgemental assessment?
>
>
> >You were. Terribly so... talk of killfiling, etc. Very harsh compared
to
> >the existing tone at that time.
>
> To be perfectly honest, I don't even know who you are. What talk of
> killfiling? When was this? Geesh.
>
>
> >Then wake up and smell the burnt toast. <G>
>
>
> The word I'm thinking of does begin with a b, but it isn't burnt.
>
>
>
> >Changed? You're assuming something here that is inaccurate. No.. he
> >*dropped* taking her insurance. And, many doctors are dropping taking
> >insurances. So, it's quite likely that some doctors are fed up to the
> >point where they aren't accepting any. The patient is on his own. So -
NO
> >- it's not a big difference.
>
> Well, let's see, there are several doctors in my immediate family and all
of
> them have concluded that if they ever stopped taking insurance,
altogether, they
> would be on welfare. You must be joking. If this doctor you are talking
about
> dropped her insurance, I can assure you it was to become part of something
more
> lucrative or reliable. I know of NO doctors who take absolutely NO
insurance.
>
>
> >Not necessarily. I just paid cash for an oral surgery last week for her.
>
> Um, that would be dental insurance, not medical.
>
>
> >Oh yeah.. that's dental.. big difference, I'll bet you'll say. But it's
not
> >any different that doctors dropping insurances.
>
> It is when you don't have dental insurance! For petes sake already. I
just had
> a root canal and a crown last week. I have insurance and I had to pay out
400
> dollars out of pocket. Boo hoooo, let me slobber to rctn now.
>
>
> >Victoria.. you've been really harsh on this NG.. and if you "detest"
that
> >person.. why can't you just blow past it all then?
>
> Because this has turned into the Karen newsgroup. Or don't you notice
that?
>
> >While you detest
> >martyrs.. you have no problem coming across really bitchy yourself quite
> >often. There are more than a few of us that detest that constant
bitching.
>
> I see, the non-judgemental person Sally is calling me bitchy. Interesting
how
> that works.
>
>
> >If you "have it all" then why are you so damned bitter?
>
>
> I'm not bitter. Maybe that's a projection of what you think of yourself?
>
>
>
> >You don't just "react", you attack. Big difference. And.. I'm not
judging
> >you at all..
>
> Hahahahahaha. Please get over yourself.
>
> >I am not judging you nor your illness.. I'm merely observing
> >all you've said and what you've proclaimed to be - and your bitter
attacks
> >aren't consistent with someone who claims to "have it all".. your words,
not
> >mine.
>
> Hahahahaha. Yeah, I say the same thing when I'm denying being judgmental
too!
> Hahahaha. You are merely observing. Uh huh. Well then, you know it all
about
> me. I'm not bitter. I'm incredibly bored and annoyed with the Rantings
of a
> woman who does nothing to help herself, has an excuse for everything,
cries of
> being broke, goes on excursions to Ben Franklyn for stash, has so much
stash
> from online that she doesn't have energy to put it away....oy vey. Give
me a
> break.
>
>
> >> I would suggest you do the same. Oh, it's only good for me. I see.
> >
> >Victoria.. you have times where you seem to try to get along in this
group,
> >and other times you're downright abrasive. I *do* let a lot of posts go
by
> >without harsh comments... do you? Seems you really like to get in the
> >middle of it very often... and it's usually quite negative.
> >
> >Just my observation.
> >
> >sally
>
> Hmmm. Stop paying so much attention to me Sally the Great. Please, I beg
of
> you.
>
>
>
>
> http://www.freetibet.org
Karen C - California
>Offices listed in the Yellow Pages and ask if that Doctor took CFS
>patients.
For your information, last summer I called the head of the local support group
to find out about doctors. Her suggestion was that I come to a group meeting
and ask for referrals. When I pointed out that I don't drive and the bus
doesn't go that far out into the suburbs (it's in another county), she wouldn't
do anything about helping me find a carpool.
The Association's contribution to my inquiry was to tell me that the local
support groups keep the list of local doctors, and the Association has no
information at all about doctors.
Since I got no help from the Association, I called every appropriate specialist
listed in the Blue Cross handbook, which took from September to November
because of the severity of my symptoms at that time.
That overlapped with being told that I needed to replace my dying PCP, and
calling dozens of PCPs in my own neighborhood to see who was accepting new
patients. I never even got as far as "do you do CFS?"; I was so desperate
after repeatedly being told "we're full" that I grabbed the first one who was
taking new patients, and put up with trials of several expensive, but useless,
medications, some of which made me sicker than I was.
I filed the SSD application myself, since that didn't need a doctor's
signature. My late PCP advised me to start the process and worry about medical
documentation later. This, however, didn't start the clock on either State
Disability or my private insurance, both of which returned the applications I
filed with cover letters stating that the doctor I saw "outright refuses to
sign disability applications, at all". Nine months later, those applications
still have not been filed.
I spent two months earlier this year trying to find an experienced SSD lawyer
who would not be put off by the fact that this is a hard case to win. When I
finally found one, she warned me that there could be a delay of a year or more
before I see any money. I told her I could hold out about six months; she had
no suggestions what I should do for money after savings ran out and before
disability started coming in.
I've spent hundreds of dollars on vitamins, herbs, and other non-prescription
self-help treatments since my doctor told me he was out of ideas since the
prescriptions didn't work.
I finally called the doctor and asked if and when I was ever going to get that
referral to the specialist, and was told "the tests show there's nothing wrong
with you."
I've just spent most of June trying to badger someone in Admin to somehow get
me in to see the specialist without a referral.
I'm terribly sorry if all that qualifies as doing nothing to help myself.
Considering that I'm dealing with major flu symptoms most days, I'm pretty
impressed at how much beating my head against the wall I've done in the past 13
months.
To answer a question you asked in a different post, I was diagnosed by a
specialist in another city, 600+ miles away. He did not die; he's just not
very convenient at the moment. $200 airfare plus his charges every month
doesn't fit my budget.
The doctor who died was my PCP; I was offered a choice of two other doctors in
her office, which was pointless, since the specialist in that medical group was
the one who told me he "doesn't know anything" about my illness and "isn't
interested in learning", either. As lower-level doctors, they weren't going to
bend the rules to refer me to anyone other than him, which my late PCP would
have.
As far as getting out of bed, yes, I can, *some* days. But it takes its toll
-- DBF took me out for lunch on my birthday and brought me back home to rest
before dinner because it was so obvious that just an hour or so had worn me
out. Then I was in bed for several days recuperating from the exertion.
It's a fact of this illness that patients have good days and bad days. On good
days, I can get up, get dressed, and go out with DBF for a while (and pay the
price for two days afterward). On bad days, the cats get fed, and I don't.
Some days, I can sit up for 5 minutes before I get dizzy and have to lie down;
other days, I can spend 2 hours sitting up before I have to rest.
> I didn't wait until I was too weak to help myself
Neither did I. I called my dear departed doctor 13 months ago and told her I
was in relapse, the day after I was forced to admit that even without job
stress I was getting worse; she immediately told me to get on disability and
made arrangements for me to see her in-house specialist.
Unfortunately, *the system* has forced me to wait and wait. Two month wait for
the initial appointment with the useless specialist. As much as a month for
doctor's offices to call back to tell me they don't do CFS. Months and months
of going through tests to prove my prior diagnosis is correct, only to be told
"I don't believe there is any such disease" (thank you for wasting my time and
money). Possibly years of fighting the system before I see any money.
> in the same complex
>as my daughter
I only wish there were somewhere I could live close to family that's capable of
taking care of me. I'm an only child and my elderly parents are dealing with
their own health problems. My aunt has her hands full with her dying sister,
and my cousin has chronic contagious illness in her household that I should not
be exposed to with my weakened immune system. The nearest relative I have,
geographically, is dealing with breast cancer and not up to taking care of me.
May is disabled with lupus; she can offer me emotional support, but she can't
take care of me. Wayne has his hands full juggling a full-time job with caring
for his parents (advanced coronary disease and Alzheimer's). DBF is working
his way through law school so that he will eventually be able to support me.
Just WHOM do you suggest I get to help me?
Or am I still "making excuses" by saying that I have no children or siblings to
help me out?
I've inquired into household help -- until I am certified as disabled by a
doctor, I am entitled to no help from the government. I'm perfectly welcome to
hire and pay them myself, though the government has no answer to the question
what I'm supposed to pay them with.
I'm at my wits end simply because I've been trying for over a year to get
something done about this illness, and all I get is brick walls. I'm tired of
phone calls that end "sorry, Ma'am, we can't help you." I'm tired of doctors
saying "without a blood test, I won't say you're disabled." I'm tired of
spending hours in the bathroom, days in bed, and weeks wondering what will
happen when the money runs out -- my insurance doesn't cover a nursing home, so
I guess I go sleep on the streets.
But mostly, I'm sick and tired of being sick and tired and not able to do a
damn thing about it. I can't even stitch to get my mind off it, because this
past month I've been unable to concentrate for more than a few minutes at a
time.
Christy
devote your time to. For as much time as you seem to be able to spend
reading and posting to RCTN each and every single day in the midst of severe
exhaustion and illness, you should be able to earn that degree in no time,
and then be "qualified" to prove them ALL wrong!! Now how special would
that be?
Christy
Oh, and drinking tons of milk each day without pain does not necessarily
prove you're *not* lactose intolerant, so unless you've been formally tested
and had it ruled out.....
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626152757...@ng-bj1.aol.com...
zphysics
kimberlii
from Wegener's Granulomatosis 4 years ago when he was 26 years old.
He had 4 emergency surgeries within a 2 week period in which all of
his intestines were remove except for a 6 inch section. He developed
pneumonia, coded a couple of times and went through general hell.
After he got out of the hospital he couldn't work for a loooong time,
but begged the doctor to let him go back part time, because right
before he got so sick he and his wife had bought a house and she was
only working part time because they had a 6 month old baby. His
intestines had eaten themselves up all the way to his anus and after
his surgeries he had to have numerous surgeries on his anus to remove
dead tissue. They were trying to get it healed so they could connect
the remaining intestine, but after 3 years of pain and carrying a
donut everywhere to sit on the doctors finally decided it would never
heal and had to remove it. So now he will have a colostomy bag the
rest of his life, as long as that life will be since this is a very
serious autoimmune disease and he's only considered in remission. And
you know what? He has never once complained. I would call and ask how
he was feeling and he would say great. He came and visited 4 months
after surgery and I went to bed and cried that night because he looked
like somebody in the final stages of AIDS and walked like every step
hurt. A year after his surgery I got an invitation to a "It's been a
year and I'm still alive barbecue" Finally this last year since he had
his last surgery he has put on weight and is looking great. Sorry for
this rant, but I just want to say I'm proud to be Kris's sister.
Kim in SW Fl
Teri George
>in article ldphjts37hbcgfi7m...@4ax.com, victoria at
>ani...@animaux.net0 wrote on 6/26/01 1:48 PM:
>You don't just "react", you attack. Big difference. And.. I'm not judging
>you at all.. I am not judging you nor your illness.. I'm merely observing
>all you've said and what you've proclaimed to be - and your bitter attacks
>aren't consistent with someone who claims to "have it all".. your words, not
>mine.
Uh, just wanted to point out that Victoria has been nowhere near
attacking. From what I've read, she's had about enough of seeing
excuses for every suggestion that's been made to Karen - but that's
*not* the same thing as being attacking. Anyone who's spent any time
on this group at all knows what attacking would really look like.
Personally, and considering I had the same kinds of symptoms as Karen
for quite a few years running, I don't agree with Karen's attitude
either. I suffered from unbelievable exhaustion, dizziness, balance
problems, etc, and before I was married I still worked a regular job
and had better attendance than 90% of my co-workers. I had to! In my
first years at Dow I didn't have health insurance and I didn't have
paid sick days, and there was NO WAY that I would have ever considered
going for disability. Never even thought of it. Tired or not, sick
or not, I still worked - and it made the day brighter and more
pleasant doing so. I think being around people made all the
difference. Sharing life brings more energy to life.
I still miss that camaraderie, even though I love the designing I do
now.
Get out of the house and getting moving, Karen - no matter how bad you
feel. Having control over your life and having the companionship of
others brings with it its own energy.
Teri ~~ http://www.craftsoft.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Victorian Lace Fan now available at In the Realm of Dreams Designs
Christy
I know I'm going to have the entire RCTN group hating me soon because of
what I'm going to say, and because although I read darn near every single
day, I rarely find the need or inspiration (i.e. extreme ire) to post here,
so I have no credibility or "following", but:
> For your information, last summer I called the head of the local support
group
> to find out about doctors. Her suggestion was that I come to a group
meeting
> and ask for referrals. When I pointed out that I don't drive and the bus
> doesn't go that far out into the suburbs (it's in another county), she
wouldn't
> do anything about helping me find a carpool.
SO SCRIMP AND SAVE UP THE MONEY FOR A FREAKING CAB RIDE ONE TIME!!!!!
No matter what the cost!! It is NOT her responsibility to find you a ride,
it's YOURS.
If that is where they are telling you the best place to get referrals is,
then that is what you have to make possible!! I swear, the more you
complain about the futile paths you attempt to take, the more it becomes
clearly apparent that although you have a car full of passengers telling you
"you must take a right at the next stoplight", you will always insist it's a
left!!
(snip)
> Since I got no help from the Association, I called every appropriate
specialist
> listed in the Blue Cross handbook, which took from September to November
> because of the severity of my symptoms at that time.
If I go to google and do a search for you from September to November, how
many RCTN posts will I find?? And just what is your definition of
"appropriate" specialist?
(snip)
>
> I've spent hundreds of dollars on vitamins, herbs, and other
non-prescription
> self-help treatments since my doctor told me he was out of ideas since the
> prescriptions didn't work.
Perhaps all those "self help treatments" are what's making you sick(er)??!!
People think they're the cure-all, when in fact, they usually quite the
opposite. Many of these herbs and new fangled "cures" out now have
dangerous consequences, especially when combined with prescription meds
without a doctor's advice or knowledge.
(snip)
> To answer a question you asked in a different post, I was diagnosed by a
> specialist in another city, 600+ miles away. He did not die; he's just
not
> very convenient at the moment. $200 airfare plus his charges every month
> doesn't fit my budget.
If the mountain won't come to Mohammed..... You're not tied to a job too
lucrative to leave--have you ever considered moving to that specialists
area?? If moving across the globe to some obscure country, leaving all
family and "friends" behind, meant getting the medical help I needed, I'd be
on the next plane out. See y'all! I know HUNDREDS of the patients I've
worked with in the past that have done that.... If that's what it takes,
they just do it--lock, stock, and barrel. You wouldn't be uprooting a
family of five in the middle of the school year...
> As far as getting out of bed, yes, I can, *some* days. But it takes its
toll
> -- DBF took me out for lunch on my birthday and brought me back home to
rest
> before dinner because it was so obvious that just an hour or so had worn
me
> out. Then I was in bed for several days recuperating from the exertion.
I know it's not romantic, but wouldn't it be great if DBF came over, put an
easy meal in the oven, and while it baked spent that time cleaning and
organizing your apartment instead of dragging you out to a restaurant and
exhausting what little energy reserve you have? To me, someone that'd
deliberately make me partake in such a debilitating activity, surely isn't
thinking of my best interests. Cook me some Campbell's soup honey, and make
me a grilled cheese! Then get to work on that bathroom.....yeah, now that's
a dream come true, and I'm not even in need of cleaning assistance. You
rent movies to watch together, why not forego just one and spend that time
straightening up? It's still time you're spending together.
(snip)
I can't even stitch to get my mind off it, because this
> past month I've been unable to concentrate for more than a few minutes at
a
> time.
The proliferousness of your RCTN posts proves otherwise....
I'm sorry to be such a B* about this. I'm usually about as sympathetic as
they come, but frankly....all this whining is really starting to get on my
nerves. So killfile you'll all tell me, blah..blah... I'm curious to know
just how MUCH of RCTN those who'll jump on me first actually read and PAY
ATTENTION. Day after day, week after week...I'm not sick, disabled, or
otherwise impaired (insert thanks to any deity here), I spend hours reading
RCTN every day, and I can't keep up with the quanity of Karen's posts....I
have no idea how she does it. And that is the crux of my beef, I guess.
How can anyone SO sick, SO tired, SO disabled be able to spend HOURS online
reading and answering posts day after day? Not to mention how much
stitching she does, too?? Granted, it isn't too labor intensive, but from
the sound of things....isn't just sitting up too exhausting??
Sorry, but perplexed,
Christy
(I just had to get that off my chest)
Teri George
wrote:
>A year after his surgery I got an invitation to a "It's been a
>year and I'm still alive barbecue" Finally this last year since he had
>his last surgery he has put on weight and is looking great. Sorry for
>this rant, but I just want to say I'm proud to be Kris's sister.
And well you should be, Kim. Kris sounds like someone to be very
proud of!!
Sharon Crescent
You just spoke for me, completely. Thank you and don't you feel better
getting that off of your chest? ;)
Sharon C
Tucson, AZ
off to clean her house after working 10 hours today. tired? yes, too bad?
yes. :)
"Christy" <chris...@stopspam.yahoo.com> wrote in message
news:_za_6.1991$LX6.3...@news.uswest.net...
Karen C - California
It would be about $100 round trip. Since I'm already scrimping everywhere I
can to make my savings last a little longer, it would be hard to find a place
to scrimp that much.
> And just what is your definition of
>"appropriate" specialist?
Depending on the medical group, some still have it under the original area of
rheumatology/virology. Others have it under neurology, internal medicine,
infectious disease, and I don't remember what-all else.
>Perhaps all those "self help treatments" are what's making you sick(er)??!!
Considering that one of the prescription medications made me throw up
constantly, and the self-help stuff has had no apparent side effects, I doubt
it. My doctor surrendered in February and told me he wasn't sure what else to
try; I was under the impression he was going to consult the specialist about
his next move, but instead he did nothing until I got on his case.
>-have you ever considered moving to that specialists
>area??
Are you volunteering to help me pack? To pay for movers to do the packing
because I can't? To cover the 50% increase in cost of housing there? (Yes, I
did check that quite recently.) BTW, when I left there ten years ago, the cost
of moving into a shoddy 1 BR apartment, including first and last month rent,
utility deposits, etc., was close to $1500; I'm sure it's double that now. Are
you taking up a collection to get that several grand for me?
Further, DBF is tied to a school program here, and might not be able to
transfer.
Karen C - California
>reading and posting to RCTN each and every single day
A couple minutes here and there adds up. Check the times, and you'll find that
there's a couple, then two hours of silence, a couple more, then an hour of
silence....
Christy
I don't think you'd know what to do with help if it came up and bit you on
the ass! You'd no doubt find some lame excuse around accepting it.
The reason no doctors are willing to help you, is because you consistently
insist you know more than them!! You know more than EVERYBODY!!!!
Thanks, but I think I'll donate to a more worthy cause.....
Blather on....
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626222423...@ng-ma1.aol.com...
Christy
Don't even try and fool me......You may be smarter than some of us, but
you're certainly not smarter than ALL of us. And some of us are damn sick
of your bullshit...
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626223043...@ng-ma1.aol.com...
Karen C - California
I did until I was fired because of my symptoms. I was in denial, so that same
day I signed up with a placement service. I had to cancel a couple of
interviews because at the time I was supposed to leave the house, I was still
undressed and kneeling on the bathroom floor; they declined to reschedule, and
I don't blame them -- there's no place in law for unreliable people.
I also lost a couple of jobs because symptoms manifested during the interview.
No one's going to hire someone who can't keep track of the conversation or who
suddenly goes white with pain.
I've spent hundreds of dollars on advertising my business, with no results --
no one wants a paralegal who's only able to work part-time. My resume is on
several websites, again, as soon as I say that I am only able to work
part-time, they're not interested. Ditto my attempts to work with a placement
agency.
Once every 6-8 weeks there's an ad for an actual part-time job in the legal
field. The current one demands several years of real estate transactional
experience. I did one transaction in 1982 and don't remember a thing about the
procedure. I doubt they'll call me for an interview. The one before that was
for bankruptcy law; again, my very limited experience didn't make the first
cut. Since 1984, I've worked exclusively in litigation; a "part-time" job in
litigation is 40 hours a week.
I've several times attempted to move out of legal into something lower stress,
and each time been told that I'm not being hired because "as soon as you find
one of those higher-paying legal jobs, you'll leave."
I learned the hard way the first time I was sick that to push myself to work
full-time when I feel this bad is inviting a worse relapse. I'm not making
that mistake again. I was sick for almost three years because I refused to
slow down until my body slammed on the brakes. The only reason I didn't get
fired was because I'd worked there for a long time before that and they felt
loyal to me.
My biggest problem in leaving the house for any reason is attacks of sudden
diarrhea. As in if I'm more than 4 feet from the bathroom, I'm wearing it. I
do have a little more warning about the vomiting, but I'd better be no more
than two offices from the ladies room when that strikes.
There's also the small matter of my need to rest an hour after sitting up for
an hour. If you know a firm that will tolerate that many naps, please let me
know and I'll apply there.
Other than my insomnia/hypersomnia, which is generally on a three-day cycle, my
other symptoms are not on any sort of schedule, so I can't promise to work MWF
or TTh, because next week I might be spending MTW in the bathroom, and the week
after that, it might be MTh that I'm too dizzy to get out of bed. Most
employers will humor flex-time with some sort of regular schedule; not as "I'll
show up when I feel up to it".
^Linda^
Linda
Jax, FL
"victoria" <ani...@animaux.net0> wrote in message
news:3pgijtsi1kf2k3kqb...@4ax.com...
Wow, that's such a great success for him to be so up and positive! Good for
him
and good for you to have a brother who is such a good power of example.
I am not always as brave.
I bet he must be more comfortable with the colostomy. I know to us who
don't
have one, it seems difficult. But to someone with such horrible problems
and
pain, it may just be a relief...
best to him,
Victoria
On Wed, 27 Jun 2001 00:45:37 GMT, kimb...@mindspring.com (kimberlii)
wrote:
>Okay, this is enough for me. My brother developed deadly complications
Karen C - California
>insist you know more than them!!
As is often the case with patients of chronic illness. I only have to learn
about one illness; a doctor has to learn about hundreds.
In the past 14 years, I've basically gotten an independent study Ph.D. in this
one particular disease. I've spent 14 years reading everything I could lay my
hands on about this disease, and only this disease. Thousands and thousands of
pages. A general practice doctor doesn't have that kind of time to devote to
every one of the hundreds of diseases he sees.
If I find that someone is having good results with something, I don't want to
take a chance on my doctor *possibly* seeing the article in a few months when
he has time to read the journals -- I'm going to bring it to his attention.
His ego is the least of my concerns. All I care about is getting well.
At the moment, I *know* certain things are being tested for the disease I've
been diagnosed with; my doctor's ignorance of those tests may have cost me
several months of improved health. I'm not feeling like this the rest of my
life just so he can satisfy his ego by only prescribing what he himself knows
about. I sent him the actual e-mail from the Association about the latest
studies; he wasn't interested. I was.
The best doctors for chronic illnesses are those who understand that the
patient has a vested interest in reading everything about their disease, has
more time than the doctor to do web searches, etc., and are willing to let the
patient *help*.
My doctor sees only what's written in the local paper -- I have friends and
family across the US who clip everything they find about it and mail it to me;
dozens of newspapers and dozens of magazines, each interviewing their local
specialists. The Daily News has a much shorter lead time than a medical
journal; if someone makes a fascinating discovery, my network will turn me on
to it long before it crosses my doctor's desk in a technical publication.
I have information in my file from England and Europe; stuff that's not yet
being researched in the US, so even a *specialist* in the US is not likely to
have read what I have, much less a generalist. I also read case law -- most
doctors don't. I have time to watch CNN all day while he's seeing patients.
Unfortunately, a doctor who refuses to listen to a patient who's read more than
he has on the subject is losing a very valuable resource due to his arrogance
that only a doctor can understand medical matters. Excuse me, but I have to
live with this disease, and I understand the impact of it more than anyone
else.
I also know my body better than anyone else; I've said "I told you so" more
than once to doctors who insisted I was mistaken about the reaction I'd have to
something. Mom told the doctor that he had to give this 6 year old an adult
dose of anesthesia and he told her she was out of her mind. By the time they
finally got me under, I'd been given an adult dose. According to the medical
textbooks, it should have killed me. Obviously, it didn't. Next time I had
surgery, he didn't argue.
Karen C - California
My doctor's never heard of it and wasn't interested in hearing about it. After
just a few days on the stuff, I actually had a little energy to waste. (I put
two screws through a coathook! It had been sitting there for over a year
waiting for me to have the energy to do it.)
Should I keep looking at the short walk from the bed to the bathroom as the
equivalent of climbing Everest just because HE didn't think of suggesting this
himself?
It's not a cure-all, but the inconvenience of the other symptoms has been
easier to put up with the last few days simply because I can do more than lie
in bed wondering if I'll ever feel better.
I'm still dizzy, I'm still mentally foggy much of the day, I'm still spending a
lot of time in the bathroom, I still hurt, I'm still feverish, I still have CFS
throat ... but I walked to the kitchen *several* times to fix hot lemonade with
honey to soothe my sore throat, and it didn't wipe me out for the rest of the
day.
While it may not be much to you, making it to the kitchen half a dozen times in
one day without feeling like I've run a marathon is a miracle to me.
Quite frankly, @#%% the doctor's ego. I want to get better and get back to
work. Not watch the world go by while he arrogantly decides what medical
advances I can and cannot know about.
Karen C - California
It adds up to an hour or two a day. Now, if, like most of you, I spend an hour
getting ready to go to work in the morning, that means that I have one hour to
spend at work and getting home from work before I crash. That's not enough to
get a job.
Christy
INCESSANT WHINING!!!!
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626235445...@ng-ma1.aol.com...
Christy
post you've written yet! You know what doctors think of patients like
you?? I better not say...it isn't very nice. You think doctors don't talk
with other doctors, study in their off time, or otherwise gain any medical
knowledge until it comes out in some quarterly medical journal?? I'll tell
you something, lady, you are an arrogant, dimwitted, know NOTHING **
HYPOCHONDRIAC**!!! You've thought yourself sick, and any doctor that
doesn't see that is just as dumb and foolish as you.
Just because something is being researched in Europe and not the US does NOT
mean doctors here know nothing about it.....you need to just shut up before
you lose ALL credibility. I am not a doctor, but have worked for them for
the past 10 years. If you were one of their patients, constantly
haranguing them with emails and newspaper clippings, they'd refuse to do
anything for you but refer you to a shrink as well!!
YOU ARE A NUTCASE!!
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626234916...@ng-ma1.aol.com...
Christy
If you don't have the energy to screw two screws into the wall, how do you
ever find the strength to type as much as you do?? They're both hand
activities....neither requires much more effort than the other....
And for that matter....supposed "DBF" NEVER could have screwed that in for
you in one YEARS time??? What a slough off.....
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626235032...@ng-ma1.aol.com...
Karen C - California
Not even *close* to what a CFS patient means by "tired".
Unless you've had CFS, you cannot possibly imagine what Heather and I and the
other CFS patients here mean by "tired". I've never attempted a triathlon, but
someone who's finished one of those just might be close to understanding what I
mean by "tired". Maybe. And the fatigue is merely the tip of the iceberg.
If you think I'm exaggerating, please go to the library and check out a book
about CFS written by a *patient*. Before anyone makes any further responses
suggesting my symptoms are figments of an overactive imagination, please visit
http://www.cfids.org or http://www.healingwell.com/library/cfs/info2.htm and
read some of the information there. It is one of the most debilitating
diseases simply because of the indescribable level of exhaustion. One of the
things every expert comments on is the fact that the exhaustion is so far out
of proportion to the exertion that brought it on.
E.g., reading from my notes from a recent week, on one of my so-called good
days, I did a load of laundry and was so exhausted from moving it from the
washer to the dryer that I slept for 1.5 hours while it was in the dryer; just
conked out while sitting up watching something on TV. I didn't re-make the
bed, I didn't put the laundry away. I spent the next two days lying on the
couch (laptop computers are marvelous things!), napping on and off,
recuperating from doing one load of laundry, skipping a few meals because I
simply didn't have the energy to get to the kitchen. There's an entry on one
of those days "wanted glass of water but didn't even have strength to put
glasses on" and another "wrists hurt but too exhausted to get up and get
braces". A few days later I walked to the corner store for milk, barely
managed the front stairs, and spent 3 hours napping -- a couple months before I
relapsed, I hiked 10+ miles without a problem, now I'm done in by a couple
hundred feet and a flight of stairs.
Those notes are submitted to the court under penalty of perjury, so there's no
exaggeration.
Oddly, I've learned there are different types of concentration. Some days I
cannot read the newspaper, but I can focus on a baseball game if I close my
eyes to eliminate all distractions. Other days, I can stitch, but the spoken
word becomes unintelligible just before I give up and take a nap to buy myself
another hour of verbal comprehension. (One of my last days at work, I looked
at my boss and said "speak English?" He looked puzzled -- apparently he *was*
speaking English, so I changed my request to "use small words". Sign language
helped.)
This week, the ability to take symbols off a chart and transfer them to fabric
has been eluding me, but I can read and type. I did have to type a few words
in this post with one finger because after several attempts I just couldn't get
the letters to come out right touch-typing ("written" somehow kept coming out
"groffgy"), and I did have to get the dictionary because certain words kept
eluding me -- one of those words was "patient"; on my own I came up with puppy,
piano and primping before reaching for the dictionary.
The frightening thing is that my 1987-88 relapse was even worse than this one
-- I tried too hard to go back to work full-time right after my first bout and
ended up completely bedridden, needing to be fed because I couldn't even manage
a spoon. I suspect if I hadn't lost my job this time, I'd have stupidly pushed
myself to keep going and ended up in the same condition. The hardest thing for
a Type A personality is to stop being a Type A!
Denise F. Hayden
Denise
"Christy" <chris...@stopspam.yahoo.com> wrote in message
news:1Ob_6.2008$LX6.3...@news.uswest.net...
Denise F. Hayden
lawyer....you are a self-proclaimed paralegal. Sheesh.
Denise
Indianapolis
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010626234916...@ng-ma1.aol.com...
Denise F. Hayden
Denise
Indianapolis
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010627033642...@ng-fz1.aol.com...
Sheena Mackenzie
him. Sheena
Teri George
<chris...@stopspam.yahoo.com> wrote:
>"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
>news:20010626223043...@ng-ma1.aol.com...
>> >For as much time as you seem to be able to spend
>> >reading and posting to RCTN each and every single day
>>
>> A couple minutes here and there adds up. Check the times, and you'll find
>>that there's a couple, then two hours of silence, a couple more, then an hour
>>of silence....
>Exactly....it DOES add up....thanks for proving my point.
>
>Don't even try and fool me......You may be smarter than some of us, but
>you're certainly not smarter than ALL of us. And some of us are damn sick
>of your bullshit...
Now this made me very curious. I have Karen killfiled on Free Agent
but there are other programs that I can use to read newsgroups so I
went and checked one of them. In the last 30 days, Karen has been the
most prolific poster on this group, having posted some 238 posts.
Only two other people in the entire group came even close to that
number, and they were down around 200 posts each. Most folks averaged
about 50 posts for the entire month. (BTW, in that period of time I
posted about 28 messages.)
I can well understand why you have spaces between your posts, Karen.
Heaven knows that I download the group a couple of times a day and
there usually aren't enough posts to respond to, and as often as you
seem to download it - well, understandably there won't be much in
there to answer.
Karen, just seeing all those posts from you (some 7 pages worth on
that newsreader) made me tired. No wonder you're exhausted. If I'd
answered that many posts I would be exhausted too! Not to mention
that I wouldn't have time to do anything else.
Now, if you'll excuse me, I do periodically have better uses for my
time than reading and posting on rctn.
Teri ~~ only one more chart to do on a new series of 12 designs
that'll be offered over the next several months! Yeah! (Keep an eye
out for all the new designs we'll be putting out at Charlotte next
month!)
PaulaB
I also have one of those tough brothers who never complains. After
being diagnosed with diabetes when he was four, he has fought numerous
battles - retinopathy, poor circulation (especially in his feet, which
he would inadvertantly injure because he is a high school shop
teacher), three bypasses, and in 1995, kidney and pancreas
transplants, and since then several secondary infections. Last year's
Christmas letter said that he had not missed a school day that
previous school year - the first time that had *ever* happened. He
was his (large) school district's Teacher of the Year the year he had
his transplants - he is such a highly respected guy in his neck of the
woods. Just makes you wonder how he could be such an ornery big
brother when we were growing up and then turn out to be pretty good
after all! I know what you mean, Kim! I'm pulling for Kris! Best
wishes, Paula B.
Sharon Crescent
My intent wasn't to get into a pissing contest with you, but here goes..
No, Karen, I don't have CFS, but then again, do you? Isn't that what you
blabber on and on about, trying to get this diagnosis, harrassing, this
doctor, can't get my disability, can't walk across the room, bla bla bla.
It's hard to take you serious, when I read these highly intelligible posts,
yet you don't have the energy to get out of bed??? You post here more than
anybody else I've ever seen, yet you can't even walk across the room,
because then you'll be in bed for two days? When are those two days? I've
never seen a day go by without some sort of post from you.
Stop playing the victim, Karen. You are obviously intelligent, well-versed
about your condition. It's quite possible that those here, along with
myself, get tired of giving you suggestions, just to be shot down with a 5
paragraph diatribe of you going on and on about who won't do what for you.
Such a pity party, as my Mom would say. Bite the bullet, take some advice,
that you are obviously soliciting, otherwise, why would you continue to post
about it??? Victoria obviously took a lot of time to write a post that gave
wonderful suggestions, included addresses and URLS, and she's got many
debilitating diseases. I doubt, though, that you'll take her advice, no,
you'll come back with a post of how you've tried this that and the other
thing and then add on three paragraphs about how you take notes of what you
do everyday and how exhausted you are. You exhaust me.
And I was going to let this part rest, but since you chose to put words in
my mouth, I'm going to give you words right out of my mouth. How is it that
DBF will take you on a shopping spree to Ben Franklins, yet wouldn't see
that the "love of his life" needed some sort of hired help around the house?
I suspect that with the money spent on the "stash", someone could've come to
your house for at least a couple of hours and tidied it up for you. And yes,
he is a law student and he is busy, but can't he help you? Maybe you should
forgo a lunch date out for a sandwich in and DBF tidying up for you.
I understand the need for needlework supplies, but you yourself have said
that you have so many things piled up around your house, that no one would
be able to find a seat. Perhaps you have enough stash. If my money
situation were as dire as yours (and by no means do I have unlimited
disposable income), stash would be the last thing on the list. Let's see, I
have more patterns, charts, fabric, fibers, bla bla, than I'll ever do in 10
lifetimes, so I'm going to hire a cleaning lady instead, or I'm going to pay
out of my pocket for that specialist instead, or I'm going to SAVE MY MONEY
just in case this SSD goes on a little longer.
I'm not telling you anything different than a ton of people here have,
you've just chosen to take a small line of text and blow it out of context.
But that's your style, bulldoze us with paragraphs of how you had to get the
dictionary out to type your post. If I was that tired and confused, posting
to a newsgroup would be the last place that I would be.
Karen, I truly feel bad for you and wish that you weren't sick, BUT do
something about it. If it's that bad, then don't stop till you get results.
I just spent 7 months in pain, going to countless doctors, having tests
done, to finally find a doctor who told me I had a gastric ulcer "bigger
than he'd ever seen" and my stomach was a few days from perforating. All
this time, I'd been telling my family doctor that I had pain, his solution
was pain pills. Mine was not. They thought it was my gall bladder, but
none of the tests they did showed anything but a little sludge. Nothing to
cause the pain I was in. It finally took me, going against my own doctor
and making my own appointment with a gasteroenterologist, who did an
endoscope the very next day. Now, 10 days later, on ulcer healing drugs, I
feel like a new woman. BTW, the ulcer was caused by the drugs the first
doctor gave me.
Well, I'm tired of this. I'm going to go do something enjoyable, like
stitch on my little Lizzie*Kate sampler. Life's too short to be so
miserable. Flame if you will, I could care less.
Sharon C
Tucson, AZ
"Karen C - California" <kmc...@aol.com.LuvXS> wrote in message
news:20010627033642...@ng-fz1.aol.com...
Sharon Crescent
if you have as much "legal" knowledge as you profess, isn't this obviously
against the law???? I'm sure that this would've been grounds for a lawsuit,
if it were true.
Sharon C
Tucson, AZ