Re: Re: PSC - wondering what's next

[Guest guest]

dra4checkin wrote:

>

> .... My husband and I hold a positive attitiude but

> would appreciate some indication of what is reasonable given the

> seriousness of this disease. Right now it's like being without

> sight and not knowing where you are...totally lost.

To Deborah and all other newbies who've recently arrived in our midst:

I'm afraid that's a typical part of this disease. You never quite know

what's going to happen next. With other diseases (ie: cancer, heart

disease, COPD, etc.) there is a general pattern to the progression of

the disease. We don't have that with PSC. The only sure thing is that

it will indeed progress ... but how fast, and in what way is totally

unpredictable. You can go quietly along, doing well, for months or even

several years, and then suddenly find yourself in a pickle and a panic.

If you focus on that unpredictability, you can drive yourself crazy.

It's sort of like the sword of Damocles. With time, and determination,

you can reach a level of peaceable coexistence with PSC (Sort of like

our two cats who tolerate each other but, now and then, must put each

other in a headlock and wrestle to the ground!). I've found that with a

strong sense of humor and a strong faith in God, I can cope with

anything which comes my way. This is very important to me since I'm too

high risk for transplant. My hubby and I are at total peace with this

situation, and have been for the past 6 years. There is still much in

life to enjoy and much that is good.

I would urge you to educate yourselves as thoroughly as possible so that

you can ask good questions and make intelligent decisions for your care

and treatment. I'm a firm believer in patient and dr. working together

as a team. Many of us keep a notebook with all test & lab results and

copies of medical records, so that when we see one of our drs., we have

immediate access to what the other drs. have already done. Saves vast

quantities of time, energy and frustration!!! Dr.s offices are

notoriously bad about failing to fax results to your other drs. If you

get a copy of everything, then it's always at your fingertips. You must

act as your own medical coordinator! This is very important!!

Hang in there. You will get tons of support here from some incredibly

knowledgeable folks. We will weep with you in the hard times and laugh

with you in the good times as you travel this very rocky road. You have

lots of company!!

Hugs,

Carolyn B. in SC

[Guest guest]

hi Carolyn, I have been Dx withPSC for two years now. i am really excited to be able to share with people on this webb site. I am 57 years old and went to Mayo Clinic in Jan for the first time. I met with Dr Lindor. He is the only Dr I have seen in two years that works with people with PSC. He answered our questions and I will be seeing him every three months. I would like to eamil you if it is alright to discuss some of the symptoms I have. Just to be able to talk with someone else with this disease. Hope to hear from you. in WisconsinCarolyn B wrote: dra4checkin wrote:> > .... My husband and I hold a positive attitiude but> would appreciate some indication of what is reasonable given the> seriousness of this disease. Right now it's like being without> sight and not knowing where you are...totally lost.To Deborah and all other newbies who've recently arrived in our midst:I'm afraid that's a typical part of this disease. You never quite know what's going to happen next. With other diseases (ie: cancer, heart disease, COPD, etc.) there is a general pattern to the progression of the disease. We don't have that with PSC. The only sure thing is that it will indeed progress ... but how fast, and in what way is totally unpredictable. You can go quietly along, doing well, for months or even several years, and then suddenly find yourself

in a pickle and a panic.If you focus on that unpredictability, you can drive yourself crazy. It's sort of like the sword of Damocles. With time, and determination, you can reach a level of peaceable coexistence with PSC (Sort of like our two cats who tolerate each other but, now and then, must put each other in a headlock and wrestle to the ground!). I've found that with a strong sense of humor and a strong faith in God, I can cope with anything which comes my way. This is very important to me since I'm too high risk for transplant. My hubby and I are at total peace with this situation, and have been for the past 6 years. There is still much in life to enjoy and much that is good.I would urge you to educate yourselves as thoroughly as possible so that you can ask good questions and make intelligent decisions for your care and treatment. I'm a firm believer in patient and dr. working together as a team. Many of

us keep a notebook with all test & lab results and copies of medical records, so that when we see one of our drs., we have immediate access to what the other drs. have already done. Saves vast quantities of time, energy and frustration!!! Dr.s offices are notoriously bad about failing to fax results to your other drs. If you get a copy of everything, then it's always at your fingertips. You must act as your own medical coordinator! This is very important!!Hang in there. You will get tons of support here from some incredibly knowledgeable folks. We will weep with you in the hard times and laugh with you in the good times as you travel this very rocky road. You have lots of company!!Hugs,Carolyn B. in SC

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