Re: (unknown)

[Guest guest]

Count me in !!!

" May the last sound you hear tonight be a purrrrrrrrr "

>^..^<

[Guest guest]

Hi ... I can tell you that I did check with an lawyer on my case.

The doctor not only ignored me, as a patient, but ignored the lab

results and the advice of another doctor in Urgent Care that called my

doctor and advised him that I needed to be in the hospital. It took

another two more months of pure hell. (pardon my language) My case was

sent to three different lawyers and they all said that it would be very

hard to prove that he committed mal-practice. The lawyers did say that

if I lost my life or a limb it would be very different. I'm sure they

would of jumped at the chance if I lost my life.... it's ok to live

without good lungs though.

Vicki-pm

[Guest guest]

yeah, vicki- that's our wonderful system of " justice for all " --- i

get so fed up with things i think all we " little people " should band

together and protest- and not just about medical things!!anyone game?

J.

DID SOMEONE SAY PROTEST? AS I SAID, HAND ME AN EGG (AND SOME TOILET PAPER,

AND SOME PEANUT BUTTER, AND SOME...)

ANN-MARIE

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[Guest guest]

Well I sure am ... What's really terrible is that I was not his

only patient he did this to. I ran into a friend of mine that I use to

work with in the grocery store one night. He had asked what happened

to me.... I started to describe how the doctor just let it go and

wouldn't send me to the hospital.. He stopped me right there and

said..... " I know what doctor you had, it's Dr. Hoffer isn't it " I asked

him how on earth he knew.... He said he was seeing Dr. Hoffer for upper

back and neck pain... After a couple of months of pain Dr. Hoffer told

Mike ... " Your a man, just take some Tylenol and stop whining " .... Mike

went home and told his wife what was said and she made an appt. with

another doctor. That doctor did blood workup and sent him to get an

xray then off for an MRI. Right after the MRI they admitted him to

the hospital for surgery. Mike ended up having a malignant tumor in

his upper spinal column.

Mike was told that since Dr. Hoffer is only a Family Practice doctor it

really was out of his field to diagnose this tumor. But, with this

particular health care provider you can't go see a specialist unless the

primary says you can. It's up to the primary to figure things out.

This doctor will end up by killing someone and then who will be to

blame... Him or all the people who let him carry on knowing what he's

like.

Vicki-PM

[Guest guest]

,

Yes, that is the other thing I forgot to tell you. She has had elevated sed

rates, and elevated muscle enzymes for a long time and the go up and down

related to symptoms and her current treatments.

We will have to ask Elaine about the joint redness and swelling, but I think

the only complaints of that have been related to injuries other than one

strange bout of swelling one of her knees.

Gentle hugs,

Fern

[Guest guest]

> Hi Connie- thanks for the info. I've yet to go check out the

> Nicholson's website, but hope to get to it today. Do you supplement

> with zinc and some of the other things recommended? I have zinc and

> chromium pic. here at home-

Hi ,

Except for the last few weeks, I have taken quite a few supplements over the

years. (I recently quit them to see if it would have any effect on my

dizziness.....it didn't.) Dr. Franco is quite an advocate....with his

theory being that the antibiotics knock out the infections but the body also

needs to finish the job and augment the immune system. He started me on

CoQ10 which is supposed to be good for the muscles, including the heart. He

also added magnesium and other B vitamins, chromium picolinate and of course

acidophilus to replace the healthy intestinal bacteria that is killed off by

the antibiotics. My internist added vitamin E and also calcium. I added a

few more of my own.....olive leaf extract is a good 'bug killer'.....from

bacteria to virus and other organisms. I also added salmon oil, it's a good

source of the omegas. I give the kids zinc at the first sign of a cold.

Knock on wood, I don't remember having a cold since I started the Minocin in

February of '98.

You should see my handful of pills! :-)) You know those little daily pill

boxes.....I found a huge one. My daughter thinks that it came from the

veterinary supply LOL.

I do think that the supplements are important, though.

take care,

Connie

[Guest guest]

... I just remembered, it was on Sharon's site. I'll go there and

see if the station is listed.

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

BREATH IN...BREATH OUT....

NOW GRAB A SNICKERS BAR....BUT DON'T SMOKE...

YOUR DOING FINE....EASY FOR ME TO SAY....

[Guest guest]

Vickie,

The BB posted your message with Helen's address - had two responses. - Jim

[Guest guest]

Yep, just go ahead and scratch out the address and put in her apt.

address. I think one stamp would do it. You might call the post office

and see if it would.

As for the not sending money.. I'm sorry but I don't agree. As we all

know, if your sick and unable to work, you have to have something coming

in to eat on.

I just heard from Greg and he's hoping that the TV station will do

another article on her. It would seem to me that even if she gets

deported that they would wait until she's doing better and able to

travel back to Australia. Greg will call her in another two days.

She told me that in order to make ends meet, she's been working 6 and 7

days a week and not taking care of herself like she should.

Ok, stick some more gum in your mouth so you won't smoke. I am proud

that you've gone this long. Don't let the kids get to you.

Take care,

Vicki

[Guest guest]

Hi ... it looks like the post I made at the BB never got posted.

Sometimes I hate that new set up... I'm sending money because I think it

would cheer her up. I do hope Greg sees that we just want to make sure

she has a little something to back her up.

Vicki

[Guest guest]

,

YOU GO GIRL! YOU ARE TOUGH!!!!! I AM PROUD OF YOU...THIS IS HARD!

Love,

Ann-Marie

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[Guest guest]

So proud of you !!! You hang in there. You can

beat this thing!

Hugs,

Cari

--- julie steinmuller wrote:

> HI all -- right now am in severe withdrawal-yikes-

> breathe in ,

> breathe out, breathe in , breathe out.......... I

> even just patted

> down my husband's suit jacket to see if he

> surrepticiously brought

> home a pack JUST IN CASE I was freaking out. Nope-

> didn't find any.

> OK- that's good. Doin good, I'll be ok, I will, I

> will......

> Good Vicki- good job on getting the mayor's addy- we

> can email in to

> newspapers too, huh? How do you know which station

> it was? Or are you

> just conntacting them to see if they remember?

> Doesn't matter as long

> as we can get one of 'em to run a human interest

> gig? Just wish I

> knew more as to what exactly is her health

> prognosis......

> OH LORDY do I want a cig!!!! Nope nope nope nope.

> Hope we get more

> news and something specific to do tomorrow.

> Hope all the group is doing well- love

>

>

>

>

__________________________________________________

[Guest guest]

...I can't believe there is another person like me. My doctors

always ask.. " Why didn't you call me " ?

I try to handle as much as possible at home... my clinic is 1.5 hrs away

so I'm not about to run to them with every little thing. Like yourself,

I went to bed last night then woke up a couple hrs later with a sore

throat and stuffy nose. Today I feel very tired with a little sore

throat.

Hope you start to feel better real soon. Dr. Vicki says do nothing and

rest...LOL

Take care,

Vicki-pm

[Guest guest]

,.....when my son quit smoking he was coughing up all kinds of foul

looking gunk, and I think that is pretty normal. Having a cold while you

are doing this probably makes it twice as gunky. But, as Fern said watch

the temp. you never know when it could turn into an infection instead. As

far as feeling less pain, a couple thoughts came to my mind, when I am

coming down with something a few days before I feel a huge amount of pain

all over. Then when it hits and my temp is up the pain is less. I don't

know if it's because of the added " warmth " or what. Seems silly to say,

but thats been my experience. I run a little cold most of the time anyhow

so maybe the heat from the temp acts as a comfort to aching muscles and

joints. [nothing scientific in this observation, just my own hypothesis],

then I too have less pain when I don't have to move. So laying around and

resting will probably make you feel less pain. But, unfortunately that

has a disadvantage to it as we all know then the muscles get flabby, etc.

Gotta go get ready for my appt. NOT looking forward to it. I told DH this

morning that I am so tired of going to Dr.'s, only to have them tell me

they don't know what I have. Well, hopefully this doc will be open to

exploring everything.

I'll check in later,.....thanx to all for the good wishes and prayers.

Hugs, Jax

julie steinmuller wrote:

> Good Morning Group!

> Don't worry, Fern- you're not too stern in the least- you're a NURSE!

> My mother was an RN, so I know how you gals get and you're probably

> right. But, this morning I don't have a temp and if and when the gunk

> that comes from my orifices (gross) turns green,yellow or rust-

> colored, I will take my behind to the doctor ASAP. I have had a

> tendency to get sinusitis in recent years, and if that ol' headache

> comes, I'll know. 'Sides, WebMD says if you have high temp for 3

> days, and mine hasn't been all that high...(I can hear you now- just

> waiting for you and Vicki to come rolling up my driveway..)

> I want to welcome the new member and hope you are able to find all

> the IBM info that's out there. Jim is a good source! As a group, we

> can give you info as well on possible coping techniques, and our list

> owner, Vicki, is just a well of Internet info!

> Jax- good luck with your doctor appt today (right?)- eager to hear

> back from you. , how are you feeling? Cari, you always have

> such kind words for me and the rest of us- heck, everyone here does.

> We ARE a good group, are we not?

> One interesting note- last week, before I came down with this bug, I

> was in a fair amount of pain in the usual places. Since Friday,

> though, neck, back and all have been much better. You think because I

> have just been sleeping and sitting? Seems to go that way.My muscles

> are getting flabby from un-use though. Sure doesn't take long! BTW

> Fern, Ive only had this cold since Thursday, so it hasnt been all

> that long yet- nobody else in the family is afflicted, so doubtful

> it's a flu. You are in my thoughts daily re: your medical journey and

> doctor problems- may they resolve soon. Love to all-

[Guest guest]

Gosh, , a few more cookies and rounds of party mix and WHOA--------you

could be the first member of the " caftan club " who doesn't take

Prednisone--that's the password--we might still let you in...

Ann-Marie--MCTD/PM

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[Guest guest]

Fern,

Since I am lower on the Prednisone, I am actually trying to see if I can

peel off a few pounds--I'm with you. I have been trying to drink lots of

water and eat an apple or a few graham crackers as a snack instead of you

know whats.... (there are LOTS of you-know-whats!!) I hope looking forward

to the wedding is a happy focus for you--sounds fun!

Ann-Marie

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[Guest guest]

Ann-Marie

I noticed since I've decreased my Prednisone suttle changes. Especially

in my face. The other night I went to brush some hair off my face and I

felt my cheek bone up by my temple... I haven't even seen this bone for

a very long time.

I still have a small water tower on my back but that too will decrease

more. It's been very slow coming but I'm hoping by next summer I'll be

able to wear a smaller size.

Hope all of you had a great day. Winter is coming...expecting our first

rain tonight and like always, the news media has to make a big

production out of it. .... we're on STORMWATCH 2000.... suppose to get

1 " late tonight and early tomorrow. The way they build it up you would

think a tornado was coming.

I think there just to close to Hollywood.

Take care,

Vicki-pm

[Guest guest]

,

You are so sweet. Thanks for taking me seriously and not getting upset. I

am always worried I will step on someone's toes, but I didn't tell you

anything different than I would have told a patient in my office or my

mother for that matter. I care and I don't want to see you get really sick.

I was reminded of how quickly that can happen today when I heard that a

dear friend died two days ago. It really gives you a reality check and

makes you stop and think about what is important.

Thanks for the snack suggestions. I am afraid the cereal and oatmeal one

doesn't work for me since I am allergic to oats. There are a few corn

flakes and things I can eat, but they all have so much sugar. I am allergic

to so much that my diet gets very complicated. I also try to limit my carbs

because for me the more I eat them the more I crave them. Bananas are the

worst for that. I wish I could tolerate exercise but I cannot manage it

right now with all the muscle weakness, fatigue, and clumsiness I am having.

I am afraid I would injure myself, just what I need with everything else. I

do stay active. Our only bathroom is upstairs and I go up and down ALL day

long. My kitchen is detached from the house and requires me to leave the

house to go in there where I cook and do the laundry. So I have to cart

laundry back and forth, I have to cart food from the kitchen into the house

where the dining room is, and I have three boys at home. Isn't that enough

exercise? Please say yes, LOL?

Gentle hugs,

Fern

[Guest guest]

YES! The three boys alone count as enough exercise!

LOL!

Cari

--- Starflower wrote:

> ,

>

> You are so sweet. Thanks for taking me seriously

> and not getting upset. I

> am always worried I will step on someone's toes, but

> I didn't tell you

> anything different than I would have told a patient

> in my office or my

> mother for that matter. I care and I don't want to

> see you get really sick.

> I was reminded of how quickly that can happen today

> when I heard that a

> dear friend died two days ago. It really gives you

> a reality check and

> makes you stop and think about what is important.

>

> Thanks for the snack suggestions. I am afraid the

> cereal and oatmeal one

> doesn't work for me since I am allergic to oats.

> There are a few corn

> flakes and things I can eat, but they all have so

> much sugar. I am allergic

> to so much that my diet gets very complicated. I

> also try to limit my carbs

> because for me the more I eat them the more I crave

> them. Bananas are the

> worst for that. I wish I could tolerate exercise

> but I cannot manage it

> right now with all the muscle weakness, fatigue, and

> clumsiness I am having.

> I am afraid I would injure myself, just what I need

> with everything else. I

> do stay active. Our only bathroom is upstairs and I

> go up and down ALL day

> long. My kitchen is detached from the house and

> requires me to leave the

> house to go in there where I cook and do the

> laundry. So I have to cart

> laundry back and forth, I have to cart food from the

> kitchen into the house

> where the dining room is, and I have three boys at

> home. Isn't that enough

> exercise? Please say yes, LOL?

>

> Gentle hugs,

> Fern

>

>

__________________________________________________

[Guest guest]

Hi ....

I was hoping the same thing. I did wait until the end of this week to

call in hopes I would have some good news for everyone. I was really

shocked to hear her voice and how low she is. She hasn't spoken of her

medications but she might be having a reaction to some of them. As we

were talking two nurses came into the room and they were going to do

something else with her. She did sound very breathless. It seemed to

be an effort for her to talk so we made it short.

Yes, Helen has always been so strong throughout all of her illness and

now to hear her tiny little frail voice was something very new. She

tried to explain to me just how hard it was to keep going but she would

start to cry.... She's tired of all of this. This is what scares me...

if she gives up then she will loose the battle...

She has received two cards so far... she couldn't remember who they were

from but told me to thank everyone.

I'm glad your feeling better but I'm upset that you've decided to SCRUB

your house down for your daughters birthday. I guess the old

saying.... YOU CAN'T KEEP A GOOD GIRL DOWN....is correct for you.... You

crack me up !!!!

Take care,

Vicki

[Guest guest]

,

When I was flared last winter and had trouble swallowing it was

like...the...food...might...get....down...I...hope...sometime. Does that

make sense? Also, certain textures of foods were more difficult, especially

meat.

Ann-Marie

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[Guest guest]

Hi gang,

I have swollowing problems. When I was in the Rehab-Hosp., I attended a

class on exercise and tips about eating and swolling . Eat slow, small bites

and always have some liquid near by. This can be life threatning--if you

don,t chew your food before trying to swollow it. I understand, this

problem, happens to about one half of IBM patients. I went to my

Reumatologist yesterday. He said weakness I will have put up with! I.m one,

that doesn,t give up, so with prayer and determanation, I plan to show the

Dr. I,m not a quiter!!! I.m wondering if those of you with IBM, could let me

know, what treatment (if any)you are using? I,m on 7 and half mgs. 0f

Prednisone alternating with 10 mgs every other day, Prilosec and other

scripts that I have taking for years.Since I had a sister, with Derm., and

now a bro. with IBM, The Dr. said it was in our family Genes--now my

daughters are worried, they may develope this dreadful disease. Hope to hear

from some of you soon. By the way, I sent a get well card to Helen. Hope

she won,t get too depressed--will keep her in my prayers.

Love, Ev.

0

[Guest guest]

Hey and All

Going to Baltimore on November 14th at 7:00 am. My appointment is that

afternoon at 3:00 pm and Im taking my sister with me. The poor woman never

gets to get away from her children and although this is not a vacation, Im

sure we can slip in a nice dinner and a few shops here and there. I am

hoping to come back the next night but wont know for sure until the doctor

there lets me know what he thinks.

Hope all is well with everyone here and Teddy, I want to know when your candy

starts pouring in !!!!!

" May the last sound you hear tonight be a purrrrrrrrr "

>^..^<

[Guest guest]

Hey Great news .... your on a roll now girl.... I'm sure you and

your sister will have a great time while your there.

At least now you'll get some much needed answers....

Take care,

Vicki-pm

[Guest guest]

Vickie - the anglefire (etc) link was a sex, romance site.

Jim