-similar stories

[Guest guest]

,

It is such a relief to know that I am not alone. This disease is so

frustrating and it makes it even worse that most people are somewhat

isolated in the suffering. I just found this site a week and a half

ago after sixteen years of dealing with pancreatitis. I dare to say I

feel as though already I have gained an extended family. I have felt

more hope and other things that I can't even put to words in these

last days since I can't remember when. It wasn't until I found this

site that I realized that a total pancreatectomy with islet cell

transplant might be an option for me. My doctor told me that it was

just a last resort and I should not even consider it until my

pancreas was all " used " up. I just nodded my head like a good little

girl and took his opinion as truth. I know better but didn't do

better. The mystery and no good answers had me beaten down into

acceptance a long time ago. I just got used to the idea that there

was nothing they could do for me. Now I have " had life breathed back

into me " I have a new found energy that makes me able to fight for

some answers. Maybe the surgery isn't for me but I want to find out

for sure while I still might have some islets left to transplant.

I am sure you have gotten the same looks for being over weight. Those

how bad could your pancreatitis be if you haven't even lost weight

looks! Thankfully my specialist is a kind and understanding man. He

has reassured me that my weight isn't contributing to the problem,

although I don't know if I agree. Doesn't really matter if it did

because if I could get rid of the weight, believe me it would be gone

gone gone!

I am so sorry to hear that you lost your marriage to this horrible

disease. I can certainly understand how that could happen. My husband

is fantastic. We have been together coming up on ten years, six

married. He is amazing. The bulk of responsibility for all things has

fallen onto his shoulders. He gets terribly frustrated and even

angry, God knows that he has every right to. I tend to let him vent

when he needs to. As I sometimes do too. Thankfully we are great at

communicating, we both know that there is no one to blame for this

situation and we try to laugh off the stack of laundry in the

basement among all the other symptoms of a family afflicted by

chronic illness, oh yeah and two kids under 4!! I can see how easy it

would be for someone to not be able to handle it.

My husband and I lived with my parents for about five years (in a

duplex). The last year we lived with them was the first of their

three year divorce. We have survived bankruptcy thanks to medical

bills. We have had more trials in our twenty-something lives than

most people our age and I pray all the time for God to hold us

together because I am sure that is the only way we have made it this

far. That and our mutual stubbornness. We both come from divorced

families, and we promised at the very beginning never to consider

divorce an option. This said, I have had that fear in my mind how

much easier life would be for him without me to take care of too.

I was wondering with your husband gone, do you have enough support

and caregivers? I don't mean to be nosey, just concerned. Thank you

so much for writing, each touch with someone who knows this life,

gives me strength. I hope you also find strength and comfort. God

bless and keep you.

Love and Hope,

Keri Beck RN

Mattoon, IL