An update before I disappear for a while

[Guest guest]

Hi again,

I saw my pain management doctor in Savannah yesterday and

we discussed my progress. The combination of 75 mg.

duragesic, up to 15 mgs. Oxycodone for BT and 600 mgs. of

Neurontin each day seems to be helping to control my pain

issues. The doctor did increase my Neurontin dosage up to 900

mgs. per day as this added medication has made a

considerable difference in maintaining steady control. I've had

some wonderful days and have been able to be more active

these last few weeks than in the last three years.

The thorasic spinal x-rays were clear, and the doctor had more

x-rays done yesterday of my upper spine and neck area. He's

trying to locate the reason for all of my left shoulder pain and

pain that I have in both elbows, wrists and fingers. He realizes

that the back pain is a reaction to the nerve bundles behind the

pancreas that get inflamed, since I only have problems with it

when I'm in a flare. Yet he feels that there are some nerve

problems, perhaps a pinched nerve, in addition to the pancreas

pain. I've dislocated my left shoulder four times, (a car accident,

a gymnastics fall, a skateboarding spill and a skiing injury...you

see I was very active before CP came into my life), and now he

feels that there may be some lingering nerve damage due to

these injuries. He's arranged for me to have physical therapy

here in Bluffton with a therapist who will be able to help me get

these areas strengthened. He said that if I can get them

strengthened more that I may have less pain when the flareups

occur. That sounds good to me!

My pseudocysts " seem " to be resolving. While I have no official

evidence of this since my last ultrasound in March, I think I can

tell when they are going down. I have much less pain and daily

discomfort when all is happy down there. No problems with pain

after eating, and as long as I don't forget myself and restrain

myself from any unsuitable exercise or physical activity, my pain

has been easily controlled with my current regimen. I have to

knock on wood whenever I say this, since it's really been

delightful to have this break, especially when I've needed to be

much more active with my work demands and all the wedding

business.

Since I'm feeling so well, Bob and I have decided to return to

Belize for 4 days to finish up that fully paid week's reservation

that I had to skip out on last October because of an acute attack.

This country only has one hospital and it's not equipped for a

pancreatic attack, so I'm on my own again.....

I know many of you would probably call it foolish to try this again,

but I'm stubborn and determined that I'm not going to pass up

every opportunity to do something " normal " because of fear of an

attack, which may or may not happen. That threat is always

hanging over our heads, and since there doesn't seem to be any

way to control it or know when it's going to happen, I refuse to let

the fear control me. The trip was already fully paid for last year,

and the two and a half days that we had there were fascinating,

despite my pain. I want to try it again when I'm feeling well. So

wish me luck and send some happy prayers my way.

This weekend we're going to Macon, Ga. for another

engagement party being held by all my daughter's fiance's family

friends. It's not a long drive, about three hours, but it's one of the

country's most boring drives, from Savannah to Macon. I'll need

all my energy just to stay awake for this one! Last weekend I

was in ton doing the bride's parents meet the groom's

parents, and that went very well. We all seemed to get along very

well and I don't think any of us will have any parental issues

concerning our " children " and their marriage. It's nice to know

this ahead of time, and to know that everyone was very

comfortable and of similar background, taste and interests. No

conflicts there at all........this will be very important for the future of

and Chris' marriage, and I was very reassured to have

met them and liked them. We stood outside the church after

services on Sunday morning, talking, laughing and sharing

stories like we'd known each other for years instead of days.

WHEW!! It's so reassuring to know that our acceptance of each

other is not an obstacle.

After we return I'll be online for a couple days, and then off to

Belize. I'll check in with you all when I return, hopefully with

nothing but good news.

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 professional medical consultation.