-Q's???

[Guest guest]

Hi :

I am always reading your messages on the board, and just wanted to take this

moment to thank you for all the time you take to answer peoples questions,

and also for all you share with us about your life. You seem like a very

compassionate and caring person, and I'm so sorry for your disappointment in

not getting better results from your most recent surgery. (I hope I am

remembering correctly, I'll be very embarrassed if I got that very pertinent

fact wrong.) I know that you must have put so much hope in it, and I can

only imagine to have to now accept the pain and other symptoms that you

continue to live with.

I'm happy to give you my opinions for your questions. I used to work out

3-4 times a week. Participated in spinning (indoor biking), sometimes 2

hours at a time. I also had just purchased a road bike before my first

acute attack (which was not diagnosed for another year and a half). I also

did yoga a few times a week. I played tennis, racquetball or any number of

different types of aerobic exercise classes. I'm not trying to brag, but

what I'm saying is that now, I do NOTHING. And not by choice either. Well,

I guess by choice because I choose not to suffer after I exercise! I can do

some very basic yoga stretches, but most of the time I'm too tired to even

do that. Over the past year I tried several different times to go back to

spinning. I missed it so much, and still do. But even trying to take it

easy, half way through the class I could feel the pain getting worse and

worse. The last time I went out on my bike, I almost didn't make it home.

And even if I just take small little rides around the neighborhood, almost

immediately the pain gets worse. It just seems that anything that might

cause my heart rate to go up, makes my pain worse. Anything that involves

the abdominal muscles. For a while I thought it was just in my head. But

after posting messages on the board (this was about a year ago), I received

quite a few responses from other women who confirmed that they couldn't do

anything involving abdominal muscles. I can get massages which are great,

which include massaging my stomach. About the only exercise I can do

somewhat pain free is slow walking. Even power walking causes cramping

almost immediately.

I took Creon enzymes for almost two years prescribed by Dr. Kalloo at s

Hopkins right after my first ERCP and stenting. I have been lucky enough

not to have any type of malabsorption or indigestion type issues with my cp.

I eat a low fat diet, but I didn't feel like the enzymes were doing me any

good. I stopped taking them about two months ago, and don't notice any

difference at all. In fact I weaned off everything I was taking (Creon,

Prilosec, Neurontin, Nortriptylene, Baclofen, and Paxil) except the pain

medications, at the recommendation of a pancreatic surgeon. He thought they

probably weren't doing any good, and that it was a lot of unnecessary

medication. They had pretty much all been prescribed by the pain specialist.

Dr. Yeo at s Hopkins also thought I should be able to get off the pain

medication, but he really didn't know what he was talking about there. If

I even expect to function, I need to take it. So, since stopping all the

medications I sometimes have a little bit of acid reflux, but not enough to

make me uncomfortable. I have phenergan suppositories and pills for nausea

(wouldn't leave home without it), and oxycontin (100 mgs. twice a day) and

Actiq (fentyl) pops (3 a day). I take Senakot (2 a night) for constipation.

That's it for medications.

I do take antioxidants every morning, and I do believe they help me. Give

me a little bit more energy, and if it's helping eat up any free radicals,

only time will tell, but I hear that it can't be hurting me. Though I do get

pretty nauseas in the morning right after I take them. It usually passes

after about a half hour. I have also tried acupuncture, which actually

caused an acute attack. I did three different sessions, and don't think the

money ($65-90/session) was worth the results, which were minimal. I try to

get a massage once a month. They help with energy and I think just kind of

keep the pipes cleaned out if you know what I mean.

I still work. I have been at the same job for 8 1/2 years. I used to be

quite proud of my reputation as a employee that could be counted on, and a

willing and enthusiastic team member. Since my illness began in 2001,

unfortunately I don't feel like I have that reputation any more. And not

through anything I can really control. At first when I was have some sort

of procedure or surgery every 6 months, my boss was pretty understanding.

The understanding pretty much came to a screeching halt last year. I had an

ERCP in June, during which time my duodenum was perforated. From June

through August, I missed alot of time at work. At first I was in the

hospital, or home recuperating. And after that I just felt sick all the

time. And the pain was awful. My medication had not been increased enough

to handle it, and I ran out several times, it was a terrible time. And even

though I had doctors notes alot of time, I ended up missing at least 1-2

days every week during July and August, and even into September, October,

and half of November I missed several days at a time. I was written up for

the first time in my life, for having too many unscheduled sick days and not

scheduling my doctors appointment at convenient work times. I was devasted,

and work has not been the same since. I had many of my job responsibilities

taken away that I liked, and the girl that I initially hired as my

assistant, basically took my job away, and as a matter of fact is on her way

back from France as we speak, learning about some new projects that I really

feel if I wasn't sick, would have been given to me. She has stabbed me in

the back on more than one occasion, and is the type of person who pretends

to be all sweet to my face, but would run over me (or anyone else) if it

meant moving up the corporate ladder.

I could probably write a book about all this, but it has come down to

acceptance. Accepting that this is what life had dealt me. I am grateful

they haven't fired me, and they haven't lowered my salary, so I guess if

they want me to scrub floors, as long as they pay me, what's the difference

right? It just makes me so mad sometimes. I went back and completed my

bachelors degree so I could have a career beyond being a secretary. But

now, I'm pretty much a secretary with a degree! I have had to really learn

that my job does not define who I am. I'm just glad that I am capable of

working. So many people in PAI aren't. But I take it ONE DAY AT A TIME,

and most of the time, collapse on the sofa when I get home. The weekends

are pretty much more of the same, though I really try to do some stuff with

my husband. The other morning on my way out to work on a Monday morning, I

was feeling pretty good (after having a pretty bad, sick weekend) and he

said, " I wish you felt this good on the weekend. " He didn't really mean

anything by it, except I felt guilty. So, I have really been trying to make

an effort to do stuff with him.

So, can you believe how much I wrote?? I don't post that much, like I

said, just thought I'd give you some insight into my life!

HANG IN THERE. You do so much for all of us here, WE NEED YOU.

HUGS,

Robin

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