RE: Hello and request for help! (Robin's answers to Adrienne)

May 21, 2003

What information would have been helpful to know about chronic

illnesses/disabilities? When the doctor told me I had cp, I had no idea what

chronic meant. He acted like my life would go back to normal. But maybe

that's just me!

Have you had trouble getting insurance/keeping coverage? None, Thank God!

Has anyone addressed the mental health part of the illness, such as coping

skills, meditation, the effects of stress on the body, etc? I recently

spoke to my PMS, I thought rather than just handing out pills, they ought to

have a group or something. They said that prior groups focused so much on

feeling sorry for themselves, it didn't work. I have an appointment with a

psychiatrist tomorrow. It seems like any help you need, you have to do

yourself! I also try to pamper myself, as well as have regular massages.

It seems to help.

What about your life has changed because of the illness? I feel like a

different person.

Are you having a hard part letting go of the " old " you? I still have hope to

getting back the old me. But it has been very difficult. I used to be so

active, and now I'm barely able to make it to work, though I do, and then I

drag myself home, to lay on the sofa! I used to do spinning 3-4 times a

week, yoga, go out with friends, spend time with my husband/family, go on

vacations. Nothing is the same. It's depressing. Though I recently got a

puppy, and do more reading, and make tentative plans with friends. But I

just don't have the energy I used to.

What do you think would help you with the transition? Someone who has been

there, and found a happy new life.

For those of you who are single - when do you tell a date/boyfriend about

the illness? and for those of you in serious relationships, how does it

affect the relationship? My husband feels so helpless. Mostly he leaves me

to deal with it on my own, sometimes I don't even know what to ask him for!

He's not the type to sit around, so I end of spending alot of time alone.

No point in him loosing his life too!

What about with friends/family? I still have family say, " Robin's still

sick? " It doesn't seem to matter how many times either myself, or my

husband tells them it's chronic, very few people understand. Some friends,

but not many. If you can't be out and about, you seem to get left far

behind!

Why did you seek out a support group? (to learn about pancreatitis, finding

others that understood, strength in numbers (like for political change)? I

felt like the only person in the world with cp. It was by coincidence that

I found PAI. And I will always be grateful.

If there is anything else, or you would be willing to tell me all of your

struggles, I would be most appreciative.

It is my sincere hope that we begin to help people with chronic

illnesses/disabilities by also addressing the psychological side of chronic

pain. I am having another ERCP in about two weeks. I am praying this will

help with the pain, which is my main side effect of cp. Then taking pain

medication on top of that, causes me to be tired, and also seems to

contribute to me isolating myself.

I hope these comments help

Robin

May 21, 2003