Heidi

[Guest guest]

Heidi,

Your experience sounds horrible and is one of my fears about traveling. I went

on a cruise last October with my mom and sis. This was 3 months after the acute

panc attacks returned. The trip was planned and paid for (non-refundable) 3

months before I got sick. I really didn't want to go, but if I had not gone, my

mom probably wouldn't have gone. It was the only time we had ever done a 'girls

only' vacation and even though my mom is healthier than me, I know she won't be

here forever. I went on the cruise with my PICC line in place. I had my doc's

blessings because he said since I had the PICC line for easy access to my veins

the ships doctors would be able to handle things if I had an attack. My

pancreas behaved itself quite nicely on the trip, but I got cellulitis in my arm

from the PICC line. The ship's doc was great and treated it very agressively

because of all my medical problems. I was given IV rocefin twice and then oral

keflex - to the tune of $700 on my credit card, but BCBS paid 100% when I filed

it! At this time, I didn't know that I also had liver disease. After being

diagnosed with liver disease, my docs told me I CANNOT go out of the country

without a hepatitis A and hepatitis B vaccine. Since my liver is already

comprimised, a case of hepatitis A or B would be very dangerous for me. They

wouldn't let me have the vaccines until I was on less than 5 mg of prednisone

daily (when on steriods, the vaccines may not give you the immunity they would

otherwise). My prednisone has just been reduced down to 2.5 mg daily, so I can

get the vaccines now. We had planned a trip to Cozumel, Mexico this past June,

but had to put it off because I was on too much prednisone to get the hep

vaccines. I think it was for the best because even though facilities in Cozumel

may be more advanced than Belize (don't really know for sure), the thought of

being in a hospital in Mexico is a little scary. I do know one thing. No

matter how much my health improves, we will NEVER leave the country without some

sort of travel insurance for me. I'm glad you are now home and survived your

ordeal. I cannot imagine how miserable it must have been to have to travel in

such pain.

Thankfully, I've never had any pseudocysts, so I don't have that to worry about.

CP is a very frustrating disease. On the one hand, you have doctors that, upon

hearing you have CP, immediately frown and say, " that's a really tough disease

to have to live with " . Then you have the assholes (sorry) like I got in the ER

Sunday night that think you are just a drug addict and that just because the

labs look okay, you cannot possibly be in pain.

I am hoping that the celiac plexus block will give me some relief. I'm going to

have a long talk with my GI/hep at my appt Monday. I would like for him to give

me something in writing saying that even when my labs are normal, I may very

well be in severe pain that is beyond the level that can be reasonably

controlled by oral pain medication.

I am doing better today. I am trying to eat a little. That may be a mistake

but we'll see. More than anything today I am just so incredibly exhausted. I

feel like a slug. I would so like to get out and just go to Walmart for a bit,

but just unloading the dishwasher and loading it took everything I've got. I

haven't even showered and am still in my jammies. I'm going to eat a little,

rest a bit, and then see if I can manage the energy to give my stinky baby (min.

dachshund - KayDee) a bath in the kitchen sink. Maybe after that I can find the

energy to shower. This really sucks because there is so much I want to do. My

dad called me Sunday just to see how I was doing and he fussed at me and told me

that I just had to slow down and rest more. This is a man who is 68 years old

and supposed to be retired, yet he still goes to work every day. Although, he

did say that this last tax season was the last that he was going to work like he

did (7 days a week 12-16 hours a day). He constantly goes on golf trips and

thinks nothing of working 7 days a week if he has things he needs to do in the

office. He's a CPA and even though he has retired, he still maintains an office

in his building and has kept some of his major clients. I think for a long

time, he probably thought I was just a little lazy because I would have to rest

on the weekends so much to make it through the week at work. It's funny, sort

of, that now he is constantly telling me that I am doing too much. The thing is

that he really may be right. I think that I don't do much, but then when I

really think about it, I have been doing more than I realize. I just re-did my

kitchen. I re-painted the cabinets white and put up new wallpaper. I also just

stained a lovely antique oak sideboard that we purchased. We had someone else

stip it, so the staining wasn't that hard, but it did take a few hours. And of

course, there's always something to be checked on, looked at, discussed, etc.

for Nikki's upcoming wedding in May. So, I guess my dad may be right and it may

be that the reason I've been feeling worse over the last few weeks is simply

because I am not resting as I should. However, I don't think it's good or

healthy to just spend 24 hours a day lounging on the recliner eating bon bons,

either! I am going to try to listen to my dad, and my mom, and my husband, and

my daughter who have all told me to slow down and rest more - at least for a day

or so!

Thanks for your info and words of encouragement.

W