Thank you

[Guest guest]

You're very welcome Sandy. Hope things have calmed down for you some and

you're doing OK now too.

We love ya,

>>>>>>>>>>>>>>>>>>>>

To All My Friends,

I received your flowers today in regards to the passing of my

step-father. Thank you very much for your thoughtfulness. I

really appreciate it. Also, thank you for your kind words and

prayers. God Bless You All.

Love,

Sandy

[Guest guest]

In a message dated 8/31/00 5:16:33 PM Pacific Daylight Time, loggiekw@...

writes:

<< I am so much healthier than most of the people who post here yet so many

have been so kind to me. I can't tell you what your words and prayers have

meant to me >>

Hi , and all,

It's all about taking care of each other. No one knows whose having health

problems, as our health problems, holistically, aren't always physical. It's

just knowing that there are so many people here that care. Not much can

replace that.

<< I had a bad day today. My pain is continuing to increase again. I called

my

Gastro and wants me to quit taking Pamine and take Levsin. I told her the

Levsin did nothing for the panc type pain. It works wonders when I have IBS,

but does nothing for the pain under my rt. rib, in my side, and around to my

back. I was really irritated. I called back and told the receptionist it

didn't help. The nurse called me back saw that I have lupus. She said the

doc said my pain was caused by my lupus and I should consult my primary care

doc since the meds she had

prescribed weren't working. I do believe this is most likely related to by

my lupus. However, that doesn't make the pain any less real. I feel like if

I could just have a mild pain med, I'd be better able to make it through the

day. However, I feel like the

docs think I'm just some kind of druggy! >>

I understand how frustrating that entire scenario must have been. I have had

the same thing happen to me. Since I have a different specialist taking care

of each of my body parts, they keep denying my complaints are related to them

and they keep sending me to another doctor. Now, actually, my primary

Internist will hardly see me and tells me to call one of the specialist. It's

like a merry go round. Especially, if they would just listen to me, I could

tell them what I need.

Karyn

[Guest guest]

In a message dated 9/1/00 8:33:12 PM Eastern Daylight Time, loggiekw@...

writes:

<< He did at least call in pain med - 15 pills with a refill even. Even

though

my feelings are hurt >>

, you just got overloaded with the coincidence of a lot of

circumstantial things. Just bad luck, don't worry about it.

Another opinion, I have a stash of pain meds that I keep for emergencies -

like long weekends - I would recommend to any Panc. patient to think ahead

and be sure to keep a supply to get you through any " hard times " . Yeah I know

that sounds like " druggie " talk but so be it, it's better than having to wait

even for a script to be called in and filled.

[Guest guest]

Thanks Poncho. I used to be one of those people that would almost always say

- no thanks when offered pain med. My family doc used to offer it to me at

the drop of the hat. I used to have a lot of problems with my back and he'd

also offer pain med. He has not offered once since this started in Jan. The

old gastro and ER doctors have prescibed it several times and I do try to

save it for when I really need it. This is the first time I have actually

asked my family doc for pain med for myself. I am so afraid of the " druggy "

label. This new gastro gave me Ultram after the ERCP in Aug, but she is

against pain med because she says its not good for my IBS.

So far I have taken 2 of the 15 pills the doctor called in (with 1 refill -

for my family doc this is very generous - he is VERY conservative lately with

any type meds). He called in propoxy/apap 100-650. I don't know how strong

this is. It doesn't knock me out, but it definitely takes the edge off the

pain and makes it totally tolerable. I took a pain pill at 6:30 a.m. because

the pain woke me up this morning. It's now almost 4 hours later and the pain

is just a dull ache. How wonderful! I feel so much better when the pain is

less.

I am going to get over my druggy fear and I am going to begin asking for pain

med. Maybe for now, the only thing that can be done is pain management. I

am going to quit being ashamed of needing something more than over the

counter meds for pain. I know that I am NOT a druggy and so do my friends

and family. Who cares what the doctors think? Actually, I really do care

what they think, more than I should. But I am going to put taking care of me

first!!!!

Thanks for all the love and support. I couldn't make it through without you

guys.

Love to all,

[Guest guest]

In a message dated 9/2/2000 11:08:03 AM Eastern Daylight Time,

poncho9191@... writes:

<< Another opinion, I have a stash of pain meds that I keep for emergencies -

like long weekends - I would recommend to any Panc. patient to think ahead

and be sure to keep a supply to get you through any " hard times " . Yeah I

know

that sounds like " druggie " talk but so be it, it's better than having to

wait

even for a script to be called in and filled. >>

Poncho,

Same here. Somehow, my doctor's appointments keep moving up a week which

allows me to always have a surplus every month. I also try to not take

whatever isn't necessary at the time, which also keeps my stockpile growing.

Over the past couple of months, I've had to increase my pain meds and was

able to do this without my having to contact the doctor. When I see him on

Friday, I will let him know what I have been doing and he will probably

increase my dosage to match what I am taking since he lets me control my

condition as he acts as a consultant for me.

Don't feel like a " druggie " simply because you are making sure you cover all

contingencies. If you are one, than so am I.

Andre'

[Guest guest]

In a message dated 9/1/00 8:33:22 PM Eastern Daylight Time, loggiekw@...

writes:

<<

I hung up the phone and bawled like a baby. I felt like a child who had

been

chastised. I know it sounds silly, but it hurt my feelings so bad. I felt

like he was mad at me for interrupting his day. I have been this doctor's

patient for over 10 years. I have always felt like I could go to him with

anything. He and his family even go to my church.

>>

Hi , I am so sorry that your doctor talked to you like that. I have

been talked to the same way by doctors and I understand just how you feel. I

think it upsets us so very much because we are in so much need of them to

help us. We are desperate. I am tired of doctors talking rude to me and I

just am not going to tolerate it any more. lol I sure can talk tough sitting

here in my own house but I sure do hope I can muster up the nerve to put them

in there place. We will see. I am sure it will happen again because they

are full of ego and are so arrogant. Please don't let him or any of them

upset you like that again. I wish we lived close to each other so we could

accompany each other to the doctors office. Hang in there and know that we

care. Shirley

[Guest guest]

Shirley,

Thank you so much for your sweet e-mail. I am better today. I have only

taken two pain pills since he called them in yesterday. However, I think I'm

going to take a third in just a minute. I woke at 6:30 this morning in pain

and took a pill - it helped in an hour and haven't needed one since till now

- 6:30 p.m.

thanks,

[Guest guest]

In a message dated 10/21/00 5:43:48 PM Pacific Daylight Time,

lizbear68@... writes:

<< Dear Steve,

I didn't even get to say congratulations that Tammy came home and

she's

back in already. I was so sorry to read your posting. Are things going any

better? Does anyone know what is going on or have a plan? As usual, you and

the kids are all in my prayers. I do so wish that I had more to offer. Take

care of yourself, too.

>>

:

As usual nobody knows anything. She was able to sit up in bed today about

5:00 PM I brought the kids to see her and she livened up a bit. There are 2

more docs looking into her case but they are all the same DAHHH I DON " T KNOW.

Your kind words are enough to help THANK YOU!!!!!!!!!!!!

Your friends Tam & Steve

[Guest guest]

In a message dated 10/21/00 11:43:01 PM Eastern Daylight Time,

LenhartROCKO@... writes:

<< >>

:

As usual nobody knows anything. She was able to sit up in bed today about

5:00 PM I brought the kids to see her and she livened up a bit. There are 2

more docs looking into her case but they are all the same DAHHH I DON " T

KNOW.

Your kind words are enough to help THANK YOU!!!!!!!!!!!!

Dear Steve, when I had my two blood infections they removed the port just to

be on the safe side. They were concerned that bacteria might be in the port

as well. Have they removed Tammy's port? Hang in there. I know you must

feel like you cannot hold on much longer but you can Steve. I am praying for

you and your strength as well as for Tammy and the children. Love, Shirley

[Guest guest]

Hi,

I wanted to thank all of you who called or e-mailed, for sharing your

information, experiences, and words of encouragement. It will be a welcome

day (that can't get here any too soon) when resurfacing is better

understood and accepted by the health insurance companies. For now, those

of us who are " next in line " will continue to look to and appreciate the

help from folks who have been through it successfully. Hopefully, I will

be able to repay your kindness at another time, by helping somebody else.

I take great heart from the stories from people who persevered and

convinced their insurance company to change their mind and approve the

procedure. As one person said, " we surfers are a stubborn lot ... its a

prerequisite " . Unfortunately, there were also disheartening stories from

folks who have been shut down and belittled by closed-minded insurance

companies at every step of the way and who's best hope now is an expedited

approval by the FDA. My appeal to the insurance company for coverage for

Dr. Mont goes out next week - I appreciate your thoughts and offers of prayer.

And to those of you who shared your experience of travelling to England or

Belgium to get a BHR, thank you too. I don't think I could have heard from

a more enthusiastic group. Both Dr. DeSmet and Mr. Tracey sound like

exceptional surgeons and, based on your testimonies, if I can't get

approval from my insurance company to get it done here in the US, I'll feel

very comfortable going to Europe.

Anyway ..... Thank you again.

Regards,

Carl Haag