Encouraging words from PSC patient of 35+ years

[Guest guest]

Hi Y'all,

I'm a previous, short time participating member, from about a year

and a half ago. I registered again with the group because I would

like to have your young members understand that your condition does

not have a pre-determined course, but may improve instead of worsen.

This disease has infinite degrees. Don't program yourself mentally

to get worse, but do what you can to stay physically active and

develop an attitude that you are here to stay a while. I'm 56 the

first week of October and just had an annual physical where the only

indication of PSC was one or two slightly elevated enzymes. My

health is better than it has ever been. Yes, I was a " classic case "

of UC as a child and PSC as a youth. I've had several biliary

surgeries and many liver infections and have the illeoanal pouch

arrangement since 1998. I also have two grandsons, two engineer

sons with lovely families, and an active working career of 30

years.

Now I also have the best health of my lifetime!

I don't want to bore you, but do think I have a lot of pracital

experience in dealing with the everyday autoimune disease problems

you may be working with. As my liver doctor of 35 years said

yesterday, something I did worked. Please let me know how I can help.

Tee McCoy, Des Allemands, LA ( ON the Bayou below New Orleans)

[Guest guest]

You don't know how good that is to hear.

Lee mother of Bill [21] UC/PSC 06/04

> Hi Y'all,

> I'm a previous, short time participating member, from about a year

> and a half ago. I registered again with the group because I would

> like to have your young members understand that your condition does

> not have a pre-determined course, but may improve instead of worsen.

> This disease has infinite degrees. Don't program yourself mentally

> to get worse, but do what you can to stay physically active and

> develop an attitude that you are here to stay a while. I'm 56 the

> first week of October and just had an annual physical where the only

> indication of PSC was one or two slightly elevated enzymes. My

> health is better than it has ever been. Yes, I was a " classic case "

> of UC as a child and PSC as a youth. I've had several biliary

> surgeries and many liver infections and have the illeoanal pouch

> arrangement since 1998. I also have two grandsons, two engineer

> sons with lovely families, and an active working career of 30

> years.

> Now I also have the best health of my lifetime!

> I don't want to bore you, but do think I have a lot of pracital

> experience in dealing with the everyday autoimune disease problems

> you may be working with. As my liver doctor of 35 years said

> yesterday, something I did worked. Please let me know how I can help.

> Tee McCoy, Des Allemands, LA ( ON the Bayou below New Orleans)

>

>

>

[Guest guest]

I need to chime in here - I too feel so new to all of this, and for the first time feel that the tidal wave has calmed, in part because of this group. When Suzanne first got her diagnosis I think I was afraid to join a group, my husband told me about it, but I did not join right away. I spent my time in a frantic search, on my own, for some answers (or was I searching for comfort?). You all know what I found ... It is here that I found the comfort and great stories. I am so relieved to hear that people have gone on with normal lives (or redefined normal to include doctors and medicine) and are experiencing a high quality of life. The tears haven't left completely, but I wonder if they ever will. I have learned so much in such a short period of time, I feel as though nothing will ever be as shocking as the initial news was, because there are so many of you who have "been there" and "done that". Thank you ...

LINDA

(Mom of Suzanne, 15; UC 1/04, PSC 3/04)

-------------- Original message -------------- You don't know how good that is to hear.Lee mother of Bill [21] UC/PSC 06/04

[Guest guest]

I need to chime in here - I too feel so new to all of this, and for the first time feel that the tidal wave has calmed, in part because of this group. When Suzanne first got her diagnosis I think I was afraid to join a group, my husband told me about it, but I did not join right away. I spent my time in a frantic search, on my own, for some answers (or was I searching for comfort?). You all know what I found ... It is here that I found the comfort and great stories. I am so relieved to hear that people have gone on with normal lives (or redefined normal to include doctors and medicine) and are experiencing a high quality of life. The tears haven't left completely, but I wonder if they ever will. I have learned so much in such a short period of time, I feel as though nothing will ever be as shocking as the initial news was, because there are so many of you who have "been there" and "done that". Thank you ...

LINDA

(Mom of Suzanne, 15; UC 1/04, PSC 3/04)

-------------- Original message -------------- You don't know how good that is to hear.Lee mother of Bill [21] UC/PSC 06/04