Robin

[Guest guest]

I usually don't respond to the e-mail this way per e-mail etiquette, but I

think having two Robins has caused a little confusion. Robinmk02-I think

these comments were directed at my comments (below). If you read the e-mail

I posted below, it does state that this doctor says I'm cured since the

sphincterotomy. Maybe we should make sure we always include our

initials...to avoid further confusion.

Robin R.

Sr. Production Planning Specialist

* (ext. 102)

* (fax)

robin.cox@...

Re: Robin

I am very sorry I had offended you that was most certainly not my

intention. I must have misunderstood your statement that the doc

told you that you no longer had pancreatitis. I have been under the

impression that once you have cp you always have cp unless you have

tp.

I do aplogize for having misunderstood.

> he said I probably had

> SOD, which should have been fixed by the sphincterotomy and

stent. In his

> opinion I didn't need the second stent. At this point, he doesn't

think the

> pain is from my pancreas at all, because it is a constant, vice-

like grip

> around my right side, that gets worse with activity, especially

any type of

> workout. He said pancreas pain usually comes and goes, since the

pancreas

> is an organ that moves and changes. So, even though I might have

had

> pancreatitis after the first stenting, he no longer thinks I do.

>

>

>

>

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[Guest guest]

Robin,

Hopefully you'll have as much relief from the duragesic's as I do. I'm on 50

mgs. of the duragesic, in addition to the Oxycontin and Oxy IR. I absolutely

love the patch, I had the first real continuous relief ever, using these when I

started on them a year ago.

I'll mention the Actiq pops to my physician. I know he'll either have to

increase the Oxy IR dose or come up with something else, perhaps just a

higher dose of the Oxy IR would be enough. It does seem to settle down

after about 4 hours and things are then back to normal, but those 4 hours are

right at mid day when I'm trying to get the most work done, so being in pain at

that time is totally unacceptable. I am still trying to work a few hours each

day, and this is the time when I'm doing that and meeting with my clients, so I

have to be able to function and not have my head clogged with pain

medication.

Thanks for the tip. I've heard of a few others that have used the Actiq pops

and had success.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

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

should not be substituted for professional medical consultation.

Robin wrote:

I could relate to the " worthlessness " of the Oxy IR, and I suffered for many

months before the new pain specialist suggested Actiq (Fentyl Pops)

which are great. Immediate relief from breakthrough pain.

[Guest guest]

Hi Robin. I too am suffering at my job becuase of this pain. I've

always been the major breadwinner, and now I may have to make the

decision in the next few weeks to try to get social security

disability. I was sitting at home today thinking about what I would

do if I lost my home. I haven't applied for any promotions because I

was sure I wouldn't get them becuase they know I am chronically ill.

I also feel alientated at work becuase no one there really

understands what it's like to live with pain all the time. My husband

is really supportive, and is trying to find one full-time job that

will pay enough to live on (he works three-part jobs right now). Tammy

[Guest guest]

Hang in there. I am also diagnosed 2 yrs now with cp. I have various

side-effects other than pain, mainly neurological that prevents me from

doing a hi-tech job I have held for over 10 years. You are not alone, I am

also in the slow process of losing my job. The stares and the whispering

can be humiliating. I was the " hi priced help " for this teck firm now they

are just happy if I show up. Although I am new to this discussion board I

have found it great to actually talk to people going through what I call my

prison time, and not just speak to drs and physcs. Who want to help but have

really no clue. I am not a religious person however I have adopted a

" river " type attitude where what will be will be. Please do not hestitate

to contact me here or on the board for a sounding board at

sbeaumont@... and good luck to both of us.

Robin

Hi Robin. I too am suffering at my job becuase of this pain. I've

always been the major breadwinner, and now I may have to make the

decision in the next few weeks to try to get social security

disability. I was sitting at home today thinking about what I would

do if I lost my home. I haven't applied for any promotions because I

was sure I wouldn't get them becuase they know I am chronically ill.

I also feel alientated at work becuase no one there really

understands what it's like to live with pain all the time. My husband

is really supportive, and is trying to find one full-time job that

will pay enough to live on (he works three-part jobs right now). Tammy