Re: hi, first post from new member to Margaret

[Guest guest]

Dear Margaret,

Vent all you want...that's what we're here for. To listen to the venting, or

the good stories,

anything that you need to say that will help you lift the burden of stress that

this disease

brings. I imagine we've heard it all! I'm really sorry about your pet

rat....it's so hard to

lose our little (or big), pets. They become such a part of our lives and our

daily attention,

that losing one can be horrible.

I've never heard of a support group that turned members down just because they

were a

member of another group! That's weird, in my book, a little bit too selective,

IMO, and

reason enough to not even want to participate in that kind of group. After all,

it's a free

country, and it's your right to participate in any group that you want to,

unless it's private

membership only. I belonged to a diabetes group like that, and found that it

was so much

under the control of the list owner that he only printed the messages HE wanted

to show,

and would never accept any messages that disagreed with what he said. And if

you knew

more about a subject than he did.....forget it, he wouldn't post that, either!

One time

when he was wrong and gave out some incorrect information about insulin, I sent

in the

manufacturer's instructions that proved he'd posted incorrect advice that could

cause a

medical problem, and he still refused to post my message.....guess it made him

look bad

and he has too much of an ego to say he was wrong. I stopped participating in

that group

immediately, it was causing me too much stress. You're probably better off

without that

group and the stress it may have brought.

And stress is one thing we hope to avoid, we know it makes our pancreas act up,

even

though the doctor's don't always agree on that. Moving can be very stressful,

too, when

are you moving to California?

I hope you'll find some friendship and support here, Margaret. We have some

really

wonderful members, people that will make you feel like friends within a short

time, and

people who have a lot of experience and are more than willing to share it to

help someone

else out with their problems. We hope you will feel comfortable here right

away.

Two years on one dosage is a very long time. It would seem reasonable that your

doctor

would agree to change your dosage. In my personal experience, I've found that

after 6-8

months, I've needed to have an increase or a total change of meds. I just met

with my

pain management doctor on Friday, and he changed my 75 mg. duragesic patch

dosage,

dropping it from every 72 hours to every 48. I'd found that it stopped working

on the end

of the second day, requiring me to take more breakthrough meds to make it

through 72

hours. I kept a diary for several weeks to show him the pattern, and he agreed

very

willingly to change it.

I suggest that you could do the same. Keep a daily diary of your pain, when

it's worse,

what meds you take for it, and how long they last before you need more. This

would be

very convincing for your doctor, and the pain management doctor that you're

hoping to

find. I've found that when you document all the different pain cycles that you

go through,

that it proves to the doctor that you're sincere about finding a solution to

your problems,

and not just another drug seeker. What meds are you currently taking?

We have a few members from Florida...hopefully one of them will speak up and

help with a

pain management doctor recommendation. If not, I know of pain support group

that can

help you locate one. If you want to email me personally off site, I'll give you

the

information about membership with the pain group. Would it be possible for your

other

doctor to refer you to a pain management doctor?

It's great that you have a supportive husband who understands your illness.

It's such an

important element of our lives, to have a caregiver who is there for us, good

days and bad.

If you could answer those questions I asked, maybe there's more that we could

suggest to

help you out. Also understand that you can vent, or comment on any message that

you

are interested in at any time. We're here to listen, and to help, whenever we

can.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and should

not be substituted for consultation with a medical professional.