RD Appt Was - Re: Tery (Long for me anyway)

[Guest guest]

Jeannette,

I went to the RD yesterday. Didn't really learn anything. I did get a shot

and today my knees are killing me (anyone else have this problem (pain in

certain joints when you get a cortisone shot?, I get a Kenalog shot in my

arm, not in a certain joint), then for 1 - 3 days afterwards, every month my

knees hurt until the shot kicks in, if it's going to.

No news from my insurance, matter of fact they were working on my file while

I was there, seems my insurance wanted some additional information (funny

when I called BCBS told me they hadn't received any paperwork from my RD,

don't understand if they don't preauthorize why they need additional

paperwork. I was also told all paperwork (for our area, not sure if this is

a requirement for all areas) has to go to the Remicade hotline first and they

forward it to the insurance company. On Tuesday I'm going to call the local

BCBS rep for my area. Everytime he stops by to see me (I'm the insurance poc

for my office), he tells me to call if any of my employees have problems (boy

is he gonna be sorry he told me that).

I told my RD I'd give them 2 weeks and then I wanted something else, I'm sick

of this, he understood and agreed with me, I'm to call in 2 weeks.

He also told me a new study is opening soon and I would qualify for it. I

told him I want to do the study but I just can't handle the emotional part if

I get turned down again, it just takes too much out of me, so most likely I

want be trying. Oh that note, I had met a lady on line who lives in my area

and did the Colloral study with me, I heard from her last night after not

" talking " to her for several months. She is on the Ankinra study and is

having great results. I'm really jealous. Very happy for her, just wish it

was me (hope this doesn't sound too bad). She is doing so good that she is

working full time and and going back to school part time. Must be some great

drug. Oh well my day is coming (just hope it hurry's' the hell up). Gee,

Jeannette aren't you sorry you asked? Tery

[Guest guest]

Tery:

I am not sorry I asked. I got the info I have been waiting for. I still

hope the Remicade thing works out for you because of the postive results from

so many. I personally am scared of being a part of a study to find out later

on that it causes #$$#$#Bfdjfj3#$%^ & **!!! If you know what I mean...... The

ER dr. told Ed while he was waiting for x-rays that because I have so many

complicated health problems and that I am hard to treat because of this, 50

years ago I probably would have just died by now. Isn't that a pleasant

thought???? Us autoimmunies remind me of just the title of a book writtten

quite a few years ago " Waiting to Exhale " . Nothing in the book, however,

reminds me of us, just the title. Anyway, trodding onward right?

Jeannette

[Guest guest]

:

That was kind of wierd to say that to Ed. He really is not too bad, I have

seen him before. He just is young and tends to spit things out of his mouth

without thinking. He seems more like a college student than ER dr. but he

really is ok. Sometimes he is trying to make a point and does not know quite

how to make it. He doesn't mean to be incentive. Just a little flakey.

Jeannette

[Guest guest]

Gee, what a insightful and sensitive ER doc, Jeannette! What in the world

was he thinking? Why would he say that to Ed? Oh, this is making me angry.

Sorry!

---- Original Message -----

From: <ednettieolson@...>

< egroups>

Sent: Friday, September 01, 2000 12:41 PM

Subject: Re: RD Appt Was - Re: [ ] Tery (Long for me anyway)

> Tery:

>

> I am not sorry I asked. I got the info I have been waiting for. I still

> hope the Remicade thing works out for you because of the postive results

from

> so many. I personally am scared of being a part of a study to find out

later

> on that it causes #$$#$#Bfdjfj3#$%^ & **!!! If you know what I mean......

The

> ER dr. told Ed while he was waiting for x-rays that because I have so many

> complicated health problems and that I am hard to treat because of this,

50

> years ago I probably would have just died by now. Isn't that a pleasant

> thought???? Us autoimmunies remind me of just the title of a book

writtten

> quite a few years ago " Waiting to Exhale " . Nothing in the book, however,

> reminds me of us, just the title. Anyway, trodding onward right?

>

> Jeannette

[Guest guest]

Tery,

Once again, I'm sorry that you don't have better news.

That's strange about the cortisone shots. You would think they would have

the opposite effect. I've only had one in my shoulder. I don't remember

anything like that happening.

Sorry about the Remicade fiasco. That is just so ridiculous. You are being a

lot more patient than I would.

I think it's natural to be jealous of the woman who is having success with

her treatment in the Ankinra study. You're just being honest. You don't wish

her ill, you just want to feel better, too. I'm hoping that you get the

Remicade soon and that it will work for you. After all this time, you

practically could have synthesized some yourself!!!!!

Better luck and much better health to you, Tery!

----- Original Message -----

From: <tjones500@...>

< egroups>

Sent: Friday, September 01, 2000 12:17 PM

Subject: RD Appt Was - Re: [ ] Tery (Long for me anyway)

> Jeannette,

> I went to the RD yesterday. Didn't really learn anything. I did get a

shot

> and today my knees are killing me (anyone else have this problem (pain in

> certain joints when you get a cortisone shot?, I get a Kenalog shot in my

> arm, not in a certain joint), then for 1 - 3 days afterwards, every month

my

> knees hurt until the shot kicks in, if it's going to.

>

> No news from my insurance, matter of fact they were working on my file

while

> I was there, seems my insurance wanted some additional information (funny

> when I called BCBS told me they hadn't received any paperwork from my RD,

> don't understand if they don't preauthorize why they need additional

> paperwork. I was also told all paperwork (for our area, not sure if this

is

> a requirement for all areas) has to go to the Remicade hotline first and

they

> forward it to the insurance company. On Tuesday I'm going to call the

local

> BCBS rep for my area. Everytime he stops by to see me (I'm the insurance

poc

> for my office), he tells me to call if any of my employees have problems

(boy

> is he gonna be sorry he told me that).

>

> I told my RD I'd give them 2 weeks and then I wanted something else, I'm

sick

> of this, he understood and agreed with me, I'm to call in 2 weeks.

>

> He also told me a new study is opening soon and I would qualify for it. I

> told him I want to do the study but I just can't handle the emotional part

if

> I get turned down again, it just takes too much out of me, so most likely

I

> want be trying. Oh that note, I had met a lady on line who lives in my

area

> and did the Colloral study with me, I heard from her last night after not

> " talking " to her for several months. She is on the Ankinra study and is

> having great results. I'm really jealous. Very happy for her, just wish

it

> was me (hope this doesn't sound too bad). She is doing so good that she

is

> working full time and and going back to school part time. Must be some

great

> drug. Oh well my day is coming (just hope it hurry's' the hell up). Gee,

> Jeannette aren't you sorry you asked? Tery

[Guest guest]

Tery,

Yes, I have had cortisone shots that caused more pain than helped. I've had

some shots give pain relief for months, and others that did nothing but

cause more pain. Now I am to the point that I won't allow any more

injections. I've been getting more relief from ice packs!

I'm sorry you've been in so much pain. No it doesn't sound bad to wish it

was you on the Ankinra study. I wish it were you too. I wish all of us

could find something to make us feel better. I tried to get in that study,

but I was disqualified because I've had it longer than 12 years (I think it

was 12)

It is not fair what the insurance company is doing. It's not their joints

that are being eroded, so I guess they're not in any hurry. I sure hope you

get an answer soon.

a

----- Original Message -----

From: <tjones500@...>

< egroups>

Sent: Friday, September 01, 2000 1:17 PM

Subject: RD Appt Was - Re: [ ] Tery (Long for me anyway)

> Jeannette,

> I went to the RD yesterday. Didn't really learn anything. I did get a

shot

> and today my knees are killing me (anyone else have this problem (pain in

> certain joints when you get a cortisone shot?, I get a Kenalog shot in my

> arm, not in a certain joint), then for 1 - 3 days afterwards, every month

my

> knees hurt until the shot kicks in, if it's going to.

>

> No news from my insurance, matter of fact they were working on my file

while

> I was there, seems my insurance wanted some additional information (funny

> when I called BCBS told me they hadn't received any paperwork from my RD,

> don't understand if they don't preauthorize why they need additional

> paperwork. I was also told all paperwork (for our area, not sure if this

is

> a requirement for all areas) has to go to the Remicade hotline first and

they

> forward it to the insurance company. On Tuesday I'm going to call the

local

> BCBS rep for my area. Everytime he stops by to see me (I'm the insurance

poc

> for my office), he tells me to call if any of my employees have problems

(boy

> is he gonna be sorry he told me that).

>

> I told my RD I'd give them 2 weeks and then I wanted something else, I'm

sick

> of this, he understood and agreed with me, I'm to call in 2 weeks.

>

> He also told me a new study is opening soon and I would qualify for it. I

> told him I want to do the study but I just can't handle the emotional part

if

> I get turned down again, it just takes too much out of me, so most likely

I

> want be trying. Oh that note, I had met a lady on line who lives in my

area

> and did the Colloral study with me, I heard from her last night after not

> " talking " to her for several months. She is on the Ankinra study and is

> having great results. I'm really jealous. Very happy for her, just wish

it

> was me (hope this doesn't sound too bad). She is doing so good that she

is

> working full time and and going back to school part time. Must be some

great

> drug. Oh well my day is coming (just hope it hurry's' the hell up). Gee,

> Jeannette aren't you sorry you asked? Tery

>

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