Back

[Guest guest]

Mark,

I'm glad you're back but not glad you're having so many problems.

It's hard to stay up when you're getting a bunch more medical

problems thrown at you. I'm guessing you either haven't been on

prednisone for a while or you were on a much lower dose. That alone

is enough to send me over the edge. I've been holding at 2 mg. now

for a couple months and I really don't want to go all the way off for

fear of a relapse. Sounds like you have two wonderful reasons to

keep fighting. I know that my daughter (22 yrs. old) has kept me

alive through a lot of things. They're a great motivator.

I hope things level off soon.

Debbie/FL

> I was regularly reading but did't post much and kinda left for

> awhile, but I found the need to come back. short back ground. I was

> diagnosed in 95 with Ulcerative Colitis, and soon after Autoimmune

> Hepititus, I have recently just gone throug the good old MRCP

again,

> Liver Biopsy last friday, and to top of that my primary doc had me

> undergoing heart testing for a shortness of breath problem, that

> aside. I had an MRCP done in 2000 and then two years later the

report

> read that a progression of sclerosing cholangitis was noticable,

that

> news came the day before I was to go for the biopsy, so needless to

> say my mood was a bit on the down side, the biopsy went ok besides

a

> little discomfort for the whole weekend. so now starying to morrow

> back onto 40mg of prednisone and 50 of Imuran, I am so tired of

being

> Tired and taking pills. Most of the time I am pretty upbeat and

live

> one day at a time and enjoy every minute of each, but after a bout

of

> testing and doc visits I get a little down.

> Persona background on me, I am a 33 year old male, with a

> beautiful 7 year old girl and a very smart and talented 9 year old

> boy.

> sorry if I tend to bable but I don't talk about my med problems

to

> to many people outside of my family. and I did get alought of infor

> and encouragement the last time I was active here. so bear with my

bad

> grammer and spelling (my keaboard bust be broke or something, ha ha)

[Guest guest]

debbie

yea my doc has been trying to keep me off of the prednisone, but it looks like that isn't going to happen,

I need to have a talk with both of my docs to get their opinion of my current treatment and where might I be next year two years and maybe five years from now. I have been on different med ideas for the past five years, so I would like to think that my doc could answer some of my questions. I guess I would just really like to know, depending on what they say I could make some decisions on how better to spend my time. my job is a whole other story with the fatigue part of this ordeal we all go through,

thanks for the note,

I have been feeling a bit alone lately.

Mark,

now in Pitts, PA used to live in FL,

[ ] Re: back

Mark,I'm glad you're back but not glad you're having so many problems. It's hard to stay up when you're getting a bunch more medical problems thrown at you. I'm guessing you either haven't been on prednisone for a while or you were on a much lower dose. That alone is enough to send me over the edge. I've been holding at 2 mg. now for a couple months and I really don't want to go all the way off for fear of a relapse. Sounds like you have two wonderful reasons to keep fighting. I know that my daughter (22 yrs. old) has kept me alive through a lot of things. They're a great motivator.I hope things level off soon.Debbie/FL> I was regularly reading but did't post much and kinda left for > awhile, but I found the need to come back. short back ground. I was > diagnosed in 95 with Ulcerative Colitis, and soon after Autoimmune > Hepititus, I have recently just gone throug the good old MRCP again, > Liver Biopsy last friday, and to top of that my primary doc had me > undergoing heart testing for a shortness of breath problem, that > aside. I had an MRCP done in 2000 and then two years later the report > read that a progression of sclerosing cholangitis was noticable, that > news came the day before I was to go for the biopsy, so needless to > say my mood was a bit on the down side, the biopsy went ok besides a > little discomfort for the whole weekend. so now starying to morrow > back onto 40mg of prednisone and 50 of Imuran, I am so tired of being > Tired and taking pills. Most of the time I am pretty upbeat and live > one day at a time and enjoy every minute of each, but after a bout of > testing and doc visits I get a little down. > Persona background on me, I am a 33 year old male, with a > beautiful 7 year old girl and a very smart and talented 9 year old > boy. > sorry if I tend to bable but I don't talk about my med problems to > to many people outside of my family. and I did get alought of infor > and encouragement the last time I was active here. so bear with my bad > grammer and spelling (my keaboard bust be broke or something, ha ha)

[Guest guest]

Welcome back Rick. WE haven't met yet but I'm Aleah. A newbie to the

group. Good luck on tx. Hopefully I'll be starting the new tx too

one day. I didn't respond to combo, so maybe this time I'll be

bless. Again, good luck and take care..

> Hi all, just got where i could post again. Would like to say

> congrats to Andi.

> I went back to dr. and it was more blood work. but will be

starting

> tx. soon now.....i hope.

> Rick

[Guest guest]

Join in when you can Rick. We're here for you whenever. We all do have other things going on in our lives, so there's no minimum amount of posting for membership.. -dz-rick <r_martin85@...> wrote:

Hi all, just got where i could post again. Would like to say congrats to Andi.I went back to dr. and it was more blood work. but will be starting tx. soon now.....i hope. Rick

[Guest guest]

In a message dated 3/14/2006 7:36:57 AM Central Standard Time,

ruf-caimi@... writes:

Hi,

Just wanted to say I am back from Disney. It was so amazing I can't wait to

go back. I was tired but I did keep up. Now I am just crashing but that is

okay. It was the experience of a lifetime. When I was at the airport

waiting to leave, my son came up to me with an additional gift. I was going

to

Disney on a very limit budget but that was not a problem. He told me and he

and my other son Ricky wanted me to have the money he was putting in my hand.

Told him, I wouldn't take it but he insisted. It was 500.00 they wanted me

to have a good time. Well I came home with most of that money and was able

to pay off two bills. Someday's God just lets you know you did something

right. Anyway it was wonderful and hope to go back one day.

Lynn (MeMom)

Welcome Back Lynn! Glad you had a wonderfull time at disney! Knowing that

you made it gives me hope that i can next summer You should be very proud of

your sons... sounds like you've raised them well. Relax and recoup if you

need to. hugs

from PA

[Guest guest]

Welcome back Lynn! So glad you had such a great time. Your sons are

wonderful.

a

On Mar 14, 2006, at 8:36 AM, Ruf-Caimi wrote:

> Hi,

> Just wanted to say I am back from Disney. It was so amazing I

> can't wait to go back. I was tired but I did keep up. Now I am

> just crashing but that is okay. It was the experience of a

> lifetime. When I was at the airport waiting to leave, my son came

> up to me with an additional gift. I was going to Disney on a very

> limit budget but that was not a problem. He told me and he and my

> other son Ricky wanted me to have the money he was putting in my

> hand. Told him, I wouldn't take it but he insisted. It was 500.00

> they wanted me to have a good time. Well I came home with most of

> that money and was able to pay off two bills. Someday's God just

> lets you know you did something right. Anyway it was wonderful and

> hope to go back one day.

> Lynn (MeMom)

>

[Guest guest]

Hi a,

I know my boys always do the nicest things. Disney was amazing and I

sure would love to go back. I was talking to my daughter and I think by

next summer she will be ready. She will by that time have completed two

years of law school and will need a vacation. I am hoping we can swing it,

finances are always an issue here.

Hope you and are well.

Lynn

Re: [ ] BACK

> Welcome back Lynn! So glad you had such a great time. Your sons are

> wonderful.

>

> a

>

>

>

> On Mar 14, 2006, at 8:36 AM, Ruf-Caimi wrote:

>

>> Hi,

>> Just wanted to say I am back from Disney. It was so amazing I

>> can't wait to go back. I was tired but I did keep up. Now I am

>> just crashing but that is okay. It was the experience of a

>> lifetime. When I was at the airport waiting to leave, my son came

>> up to me with an additional gift. I was going to Disney on a very

>> limit budget but that was not a problem. He told me and he and my

>> other son Ricky wanted me to have the money he was putting in my

>> hand. Told him, I wouldn't take it but he insisted. It was 500.00

>> they wanted me to have a good time. Well I came home with most of

>> that money and was able to pay off two bills. Someday's God just

>> lets you know you did something right. Anyway it was wonderful and

>> hope to go back one day.

>> Lynn (MeMom)

>>

>

>

>

[Guest guest]

I enjoy Epcot and want to go back without kids. The kids always want

to rush me through Epcot.

Now that I'm only a few hours away, it's on my list of things to do.

I hope you and your daughter get to go. Save your pennies.

a

On Mar 14, 2006, at 9:36 PM, Ruf-Caimi wrote:

> Hi a,

> I know my boys always do the nicest things. Disney was amazing

> and I

> sure would love to go back. I was talking to my daughter and I

> think by

> next summer she will be ready. She will by that time have

> completed two

> years of law school and will need a vacation. I am hoping we can

> swing it,

> finances are always an issue here.

> Hope you and are well.

> Lynn

[Guest guest]

We had the babies so Epcot wasn't one of the place we spent a lot of time

in. I didn't get to do the countries. My friend told me, they are not so

great but that is one thing I want to go back and see. The other is the

boardwalk, I heard that is really nice. So we will see what happens. Cross

my fingers for next summer.

Lynn

Re: [ ] BACK

>I enjoy Epcot and want to go back without kids. The kids always want

> to rush me through Epcot.

> Now that I'm only a few hours away, it's on my list of things to do.

> I hope you and your daughter get to go. Save your pennies.

>

> a

>

>

>

>

> On Mar 14, 2006, at 9:36 PM, Ruf-Caimi wrote:

>

>> Hi a,

>> I know my boys always do the nicest things. Disney was amazing

>> and I

>> sure would love to go back. I was talking to my daughter and I

>> think by

>> next summer she will be ready. She will by that time have

>> completed two

>> years of law school and will need a vacation. I am hoping we can

>> swing it,

>> finances are always an issue here.

>> Hope you and are well.

>> Lynn

>

>

>

>

[Guest guest]

I'm back, power finally came back on. Exhausted. Overdrawn.

Frustrated. And know we will try to recoop. I've answered as many

emails as I can and will get to the rest in the morning. I'm going to

go to bed now. But just wanted to let you all know that were ok.

Blessings

Darla