Still Hurting, New Name, New Year

[Guest guest]

Hi all... Happy New Year.

I was online a few months back under kozypck...

due to ISP changes, it's now.. kozytv.

Kimber was a big help for me back in August. Many thanks to her and

best wishes...

I'm still struggling with Pancreatitis.. Have not been able to do a

full weeks worth of work since last July.

I am under the care of Dr. Simon Lo at Ciders Sinai in LA, who

classifies me currently as having Idopathic Pancreatitis, essentially

they don't know what's causing it...

I am in intense pain 3 weeks out of 4 a month.

I have a Pain Management Doctor who has me on a Duragesic 100 mg/h

Patch of Fentanyl on the bad weeks, also I take Actiq 1600 mcg

fentanyl " lollipops' as my breakthrough relief.

(He treats me with small doses on my good week, so I don't experience

the withdrawal that I was experiencing before he was in the picture..)

I'm still going to the ER once or twice a month, to get a shot of

Demerol or Dilaudid... Ended up back at Ciders Sinai for 3 days just

before Christmas (and yes I lied to get out so I could be home for

Christmas)..... Doctor Lo wants to do a 3rf ERCP on me. " when I am

not in pain " to see if he can figure this out... The Pain Management

Doctor tried a Celiac Plexus Splanchnic Nerve Block on me which he

was quite confident about, which unfortunately did not work at all...

I've gone through all my savings... I'm lucky so far as my employers

are very understanding... I am receiving a small amount from State

Disability which barely covers my utility bills.

I have a heroic spouse and three concerned and caring kids (22, 21,

8)...

I try to keep my attitude positive and upbeat, but these last two

episodes have beat me up mentally pretty badly...

I'm back at work today, I went to the Rose Parade in Pasadena,

yesterday... I keep on, keeping on...

So... that's it for now for me...

Wishing Everyone a HAPPY NEW YEAR.

Koczera

[Guest guest]

Hi ,

Good to hear from another So Cal person.

I live up in Santa Clarita. My pain Doc is Dr. Watkins.

He came highly recommended and even though he is out of my insurance

system I am glad to pay the extra money.

Dr. Lo is wonderful... I originally had another Doctor who called in

Dr. Lo for consultation, after Dr. Lo took a half an hour while I was

in the Hospital to answer all my questions and explain what would be

happening to me, I was hooked.

When my Pancreatitis reoccurred, I dropped the original Doctor and

went directly with Dr. Lo. His own staff is wonderful (Demetria is

one of his nurses, who has been extremely helpful to me) and he is

well liked and respected by the hospital staff as well.

You are in THE BEST of hands.....

I am curious as to how you have been getting by since 2000?

But then I am in almost consistent pain and have been since August,

so I am guessing yours is a different situation.

I am glad as well to have someone near by to " compare notes with " ..

Keep the faith...

[Guest guest]

,

We are so close! Santa Clarita is only about 15-20 miles from Simi. Prior to

see Dr.Lo I was being treated by Dr Allister in Thousand Oaks. I also a

great Internal Meds Dr. here in Simi that studied at s Hopkins and after the

ultra sound of my gallbladder came back ok he did blood work and Whammo! my

lipase and amalase was high. I was diagnosed within 2 days of getting sick. I

had a CT scan the following day that showed my pancreas was inflamed. Dr,

was wonderful and he did an ERCP in August of 2002. By the way the year

2000 was a typo, sorry must be the meds! I actually got sick June 5th, 2002.

The ERCP showed my ducts " were so small, there was no way in " (Drs. words, not

mine) Which of course gave me my 1st attack to land me in the hospital. I

spent a week at Los Robles Medical Center, which is supposed to have great care

because they cater to the rich and the movies stars. Well I have got to tell

you, they sucked! I suffer at home because I can take better care of myself

than they did. Anywise, I was given Dr Lo's card by a sweet lady at the Social

Security Office that had over heard a conversation I was having with someone

else. She just thought he could walk on water. My 1st appointment with Dr Lo,

I took him all of my films and he spent an hour and half with me in the room,

and was able to show us where the pancreas divisum was and the duct that was not

attached to anything. He took the time to talk with my husband as a person and

really helped him to understand that I was really in a lot of pain and there was

good reason for it. I know it is pain to get an appt. with him but it is so

worth it. I am kinda afraid of my apt. on Tuesday because when he said we would

make a decision for my treatment after the holidays because he didn't want me in

the hospital for the holidays. The absolutely last thing I want is to be in the

hosp. I spent 6 months of 2000 in the hosp. with a very risky pregnancy, and I

just can't stand the thought of going in again. I have two boys (6 & 3) at home

and I don't want to be away from them. By the way I am also in constant pain

which I can keep at about a 5 most days with meds. Ever since yesterday I have

had pain at about an 8 with sharp stabbing pains at an easy 10. I even called

the internal meds Dr. last night and he called in a muscle relaxer which did

help with the sharp stabbing pains. I have to go see him tomorrow though

because when he called today to see how I am I told him my blood sugars are

ranging from 54-212, with drops and highs happening very fast. I am currently

not insulin dependant and I hope to avoid that if possible. It seems that when

these pains get really bad the blood sugars go crazy!!! Well that is a little

about my history, I don't think I've ever given it to the board before. Write

back and let me know more about yourself. We also an other member in Santa

Clarita, Maybe we should get a meet and greet going!

Simi Valley, CA

Re: Still Hurting, New Name, New Year

Hi ,

Good to hear from another So Cal person.

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