PSC and work/career

June 19, 2006

I've struggled with trying to work and finally gave up ... got back to

work and slowly got more and more tired and stressed, tried taking a

year off, didn't work either ... overall, just too tiring and too many

setbacks...finally gave in to " disability " and receiving that income

(just approved after 2 years) ... and can " consult " as long as income

is below $850 per month...I do believe stress is a factor, but I've

also found even doing things I love can be very taxing and

tiring...the body needs energy to heal and stay healthy ... only you

really know, but do know, it's not in your head! You can find out

from SSA what your income would be on disability.

barbara

>

> Just wanted to know how others deal with these issues...

>

> /Sridhar

> UC '94, PSC '95

>

June 19, 2006

I've struggled with trying to work and finally gave up ... got back to

work and slowly got more and more tired and stressed, tried taking a

year off, didn't work either ... overall, just too tiring and too many

setbacks...finally gave in to " disability " and receiving that income

(just approved after 2 years) ... and can " consult " as long as income

is below $850 per month...I do believe stress is a factor, but I've

also found even doing things I love can be very taxing and

tiring...the body needs energy to heal and stay healthy ... only you

really know, but do know, it's not in your head! You can find out

from SSA what your income would be on disability.

barbara

>

> Just wanted to know how others deal with these issues...

>

> /Sridhar

> UC '94, PSC '95

>

June 19, 2006

I am a teacher and found that I was exhausted at the end of every day. I had a 1 and 2 year old at the time and when I mentioned my fatigue to my doctor (who is usually very understanding), he said it could be the PSC or my thyroid or being a mom with two young children. I went on teaching for a year, but decided I would be better off at home. That was a year ago, and this last year has been so much better. I know I am lucky to be able to have the opportunity to be at home, but I know that it is so much better for me any my family.

I miss teaching. I mention to my husband that I want to go back, maybe even as a substitute teacher. He is understanding that I miss my career, but he also reminds me all the time how tired I really was last year.

This might not really help, but I thought I would share my thoughts.

a

PSC '04

June 20, 2006

To Barbara Webber, I am glad to wrote about the difficulties of

fatigue. I retired 18 months ago at age 55 because I just could not do

my job anymore, even part time. I have heard of people beating the

fatigue via will power but I haven't been able to. On three occasions

I have nodded off during my aerobic exercise class. I also find that

I no longer can handle stress as well.

While fatigue is not life threatening or physically painful. It erodes

you emotionally and that is hard to handle over the long run. My

inspiration is the woman who wrote the book Seabiscuit. She had

chronic fatigue syndrome and sometimes could not get out of bed. But,

she researched and wrote this wonderful book. My goal is to do as much

meaningful work and to get as much exercise at I can. I did a lot of

internet research on volunteer opportunities in my community and found

work I could do at home. Also I volunteer at the library twice a

month, a sit down, low key job. With a lot of help from my

hepatologist who contacted his PSC patients, I started a PSC support

group and that keeps me busy but it is also emotionally difficult

because some the group members are very sick.

Anyway, after 18 months it has been hard emotionally because I expect

to live with PSC for many more years. Sometimes I get depressed

because my options are limited. Sometimes I am so sleepy I don't care.

But, having some meaningful work is so helpful and I enjoy doing things

that I couldn't do when I was working. I need to remind myself that

PSC has not taken my life it has just changed my life.

I hope other PSCers who suffer from fatigue will post. Day after day

with only a few hours of active energy does wear you down sometimes and

it's okay to share it with the group,.

(Sacramento) dx UC and PSC 2001

June 20, 2006

, I don't post often anymore due to severe

itching and fatigue. I have to work to maintain my

excellent health insurance, and it is a 'sit on my

butt job' but I get very very sleepy.

I work for a utility company. I actually have it

quite good. We have to take call after call from

customer helping them set up payment arrangements,

getting service turned on or off and taking power

outage calls as well as gas emergency calls.

The only requirement is that our dress is not lewd,

and that we take our calls. What we do inbetween

calls is at our discretion.

I have a pillow at my desk for my head. When calls

are slow and I am tired, I put my head down. You see,

the calls just drop into our phone set, so as long as

I catch the call while my phone recording goes off, I

have my head up and access the customer acct, take

care of their business and put my head back down.

The teamleaders in my center are aware that I need a

transplant and although they dont come out and say it,

I know they are cutting me some slack. I have always

been honest about what is going on, I notify them as

soon as I know I have appts. and I really try hard not

to be off work.

I do find that I am less interested in doing anything

other than work and come home and crash. My only

house chore is to make my bed and do dishes each

night. There are only 2 of us and we don't eat big

evening meals anymore, mostly because I just don't

cook them. Mike does everything else...not so much

because I am sick and fatigued, but because he is a

freakin obsessive/compulsive perfectionary neat freak

and I have never been able to accomplish any task

without being told I did it wrong, should try a

different way, or do it half-butt....and quite frankly

at this point, I don't care, just so long as I don't

expend my precious energy on it.

I do exercise each night. But I do like 5 minutes and

rest for a half hour to an hour and then do 5 minutes

more and so forth until I am ready for bed.

And you are absolutely right, PSC can't take our lives

away if we don't let it. I refuse to say my life is

over with this disease (although I have had my moments

of weakness), but I try to help others, and you would

be surprise what folks share with you when calling in

about their energy bills. I am able to calm down

frantic mothers, etc. when they feel so overwhelmed

about their bill and then they mention medical

problems.

I find that when I focus to help others, it takes my

mind off my illness and gives me a warm fuzzy inside.

A very close friend at work, just lost her 5 year old

nephew. She is taking it so very very hard because

she had that child at her home more evenings than not

and he was so much a part of her daily life. She is

distraught. It has been several weeks now and I see

her shaking uncontrollably. I have listened to her

talk about messing up her gas emergency simulations

(we have to take a test every 3 months to stay

certified), and she couldn't focus.

I am trying really hard to help her see that she needs

to go talk to a professional so she can get past the

first stages of grief. I think she is still in

denial. She asked me today if I thought she was not

normal for not being able to get on with life.

I asked her to define 'normal' because my family has

had so many tragedies and each one of our family

members handles things differently. I explained to

her that my sister, 5 years after her daughter was

shot by a gang member while robbing her home, that she

was still baking birthday cakes and taking them to the

cemetary.........and if that is what helps her cope,

then it is normal.

I have gone off on a tangent, so I will wrap it up.

I'm tired and need to go rest before bed. The one

thing that I do...is take care of myself. When I am

tired, I don't fake it, I back out of committments as

I see fit. I'm less social and I am content with that

because it is what I have to do in order to maintain

daily sanity to get through one more day before I

finally get my transplant.

Today was a bummer....Mammogram. I have a jpouch

scope and MRI and then a letter from my dentist and

then I will be on the list.

Baudoux-Northrup

__________________________________________________

June 20, 2006

, I don't post often anymore due to severe

itching and fatigue. I have to work to maintain my

excellent health insurance, and it is a 'sit on my

butt job' but I get very very sleepy.

I work for a utility company. I actually have it

quite good. We have to take call after call from

customer helping them set up payment arrangements,

getting service turned on or off and taking power

outage calls as well as gas emergency calls.

The only requirement is that our dress is not lewd,

and that we take our calls. What we do inbetween

calls is at our discretion.

I have a pillow at my desk for my head. When calls

are slow and I am tired, I put my head down. You see,

the calls just drop into our phone set, so as long as

I catch the call while my phone recording goes off, I

have my head up and access the customer acct, take

care of their business and put my head back down.

The teamleaders in my center are aware that I need a

transplant and although they dont come out and say it,

I know they are cutting me some slack. I have always

been honest about what is going on, I notify them as

soon as I know I have appts. and I really try hard not

to be off work.

I do find that I am less interested in doing anything

other than work and come home and crash. My only

house chore is to make my bed and do dishes each

night. There are only 2 of us and we don't eat big

evening meals anymore, mostly because I just don't

cook them. Mike does everything else...not so much

because I am sick and fatigued, but because he is a

freakin obsessive/compulsive perfectionary neat freak

and I have never been able to accomplish any task

without being told I did it wrong, should try a

different way, or do it half-butt....and quite frankly

at this point, I don't care, just so long as I don't

expend my precious energy on it.

I do exercise each night. But I do like 5 minutes and

rest for a half hour to an hour and then do 5 minutes

more and so forth until I am ready for bed.

And you are absolutely right, PSC can't take our lives

away if we don't let it. I refuse to say my life is

over with this disease (although I have had my moments

of weakness), but I try to help others, and you would

be surprise what folks share with you when calling in

about their energy bills. I am able to calm down

frantic mothers, etc. when they feel so overwhelmed

about their bill and then they mention medical

problems.

I find that when I focus to help others, it takes my

mind off my illness and gives me a warm fuzzy inside.

A very close friend at work, just lost her 5 year old

nephew. She is taking it so very very hard because

she had that child at her home more evenings than not

and he was so much a part of her daily life. She is

distraught. It has been several weeks now and I see

her shaking uncontrollably. I have listened to her

talk about messing up her gas emergency simulations

(we have to take a test every 3 months to stay

certified), and she couldn't focus.

I am trying really hard to help her see that she needs

to go talk to a professional so she can get past the

first stages of grief. I think she is still in

denial. She asked me today if I thought she was not

normal for not being able to get on with life.

I asked her to define 'normal' because my family has

had so many tragedies and each one of our family

members handles things differently. I explained to

her that my sister, 5 years after her daughter was

shot by a gang member while robbing her home, that she

was still baking birthday cakes and taking them to the

cemetary.........and if that is what helps her cope,

then it is normal.

I have gone off on a tangent, so I will wrap it up.

I'm tired and need to go rest before bed. The one

thing that I do...is take care of myself. When I am

tired, I don't fake it, I back out of committments as

I see fit. I'm less social and I am content with that

because it is what I have to do in order to maintain

daily sanity to get through one more day before I

finally get my transplant.

Today was a bummer....Mammogram. I have a jpouch

scope and MRI and then a letter from my dentist and

then I will be on the list.

Baudoux-Northrup

__________________________________________________

June 20, 2006

Lately I find myself thinking more and more about the

course my disease is taking and my ability to cope.

My work requires alot of energy and contains alot of

stress. In the last month, I received the news that I

should stay close with transplant drs. because my ERCP

was unsuccesful in opening another duct, leaving me

essentially one open. To try and cope somewhat, I

quit caffeine and any diet sodas with artificial

sweeteners, as well as getting more exercise. This

measure has helped a little, but I know it is only

temporary. I literally will myself through the fatigue

and find myself at a crossroads as to whether to

pursue disabilty and all the issues or tough it out.

I was wondering when and how some of you decided

enough was enough and pursued your retirement?

--- Soloway wrote:

> To Barbara Webber, I am glad to wrote about the

> difficulties of

> fatigue. I retired 18 months ago at age 55 because

> I just could not do

> my job anymore, even part time. I have heard of

> people beating the

> fatigue via will power but I haven't been able to.

> On three occasions I

> have nodded off during my aerobic exercise class.

> I also find that I

> no longer can handle stress as well.

>

> While fatigue is not life threatening or physically

> painful. It erodes

> you emotionally and that is hard to handle over the

> long run. My

> inspiration is the woman who wrote the book

> _Seabiscuit_. She had

> chronic fatigue syndrome and sometimes could not get

> out of bed. But,

> she researched and wrote this wonderful book. My

> goal is to do as much

> meaningful work and to get as much exercise at I

> can. I did a lot of

> internet research on volunteer opportunities in my

> community and found

> work I could do at home. Also I volunteer at the

> library twice a month,

> a sit down, low key job. With a lot of help from my

> hepatologist who

> contacted his PSC patients, I started a PSC support

> group and that keeps

> me busy but it is also emotionally difficult because

> some the group

> members are very sick.

>

> Anyway, after 18 months it has been hard emotionally

> because I expect to

> live with PSC for many more years. Sometimes I get

> depressed because my

> options are limited. Sometimes I am so sleepy I

> don't care. But, having

> some meaningful work is so helpful and I enjoy doing

> things that I

> couldn't do when I was working. I need to remind

> myself that PSC has

> not taken my life it has just changed my life.

>

> I hope other PSCers who suffer from fatigue will

> post. Day after day

> with only a few hours of active energy does wear you

> down sometimes and

> it's okay to share it with the group,.

>

> (Sacramento) dx UC and PSC 2001

>

__________________________________________________

June 20, 2006

Lately I find myself thinking more and more about the

course my disease is taking and my ability to cope.

My work requires alot of energy and contains alot of

stress. In the last month, I received the news that I

should stay close with transplant drs. because my ERCP

was unsuccesful in opening another duct, leaving me

essentially one open. To try and cope somewhat, I

quit caffeine and any diet sodas with artificial

sweeteners, as well as getting more exercise. This

measure has helped a little, but I know it is only

temporary. I literally will myself through the fatigue

and find myself at a crossroads as to whether to

pursue disabilty and all the issues or tough it out.

I was wondering when and how some of you decided

enough was enough and pursued your retirement?

--- Soloway wrote:

> To Barbara Webber, I am glad to wrote about the

> difficulties of

> fatigue. I retired 18 months ago at age 55 because

> I just could not do

> my job anymore, even part time. I have heard of

> people beating the

> fatigue via will power but I haven't been able to.

> On three occasions I

> have nodded off during my aerobic exercise class.

> I also find that I

> no longer can handle stress as well.

>

> While fatigue is not life threatening or physically

> painful. It erodes

> you emotionally and that is hard to handle over the

> long run. My

> inspiration is the woman who wrote the book

> _Seabiscuit_. She had

> chronic fatigue syndrome and sometimes could not get

> out of bed. But,

> she researched and wrote this wonderful book. My

> goal is to do as much

> meaningful work and to get as much exercise at I

> can. I did a lot of

> internet research on volunteer opportunities in my

> community and found

> work I could do at home. Also I volunteer at the

> library twice a month,

> a sit down, low key job. With a lot of help from my

> hepatologist who

> contacted his PSC patients, I started a PSC support

> group and that keeps

> me busy but it is also emotionally difficult because

> some the group

> members are very sick.

>

> Anyway, after 18 months it has been hard emotionally

> because I expect to

> live with PSC for many more years. Sometimes I get

> depressed because my

> options are limited. Sometimes I am so sleepy I

> don't care. But, having

> some meaningful work is so helpful and I enjoy doing

> things that I

> couldn't do when I was working. I need to remind

> myself that PSC has

> not taken my life it has just changed my life.

>

> I hope other PSCers who suffer from fatigue will

> post. Day after day

> with only a few hours of active energy does wear you

> down sometimes and

> it's okay to share it with the group,.

>

> (Sacramento) dx UC and PSC 2001

>

__________________________________________________

June 20, 2006

Lately I find myself thinking more and more about the

course my disease is taking and my ability to cope.

My work requires alot of energy and contains alot of

stress. In the last month, I received the news that I

should stay close with transplant drs. because my ERCP

was unsuccesful in opening another duct, leaving me

essentially one open. To try and cope somewhat, I

quit caffeine and any diet sodas with artificial

sweeteners, as well as getting more exercise. This

measure has helped a little, but I know it is only

temporary. I literally will myself through the fatigue

and find myself at a crossroads as to whether to

pursue disabilty and all the issues or tough it out.

I was wondering when and how some of you decided

enough was enough and pursued your retirement?

--- Soloway wrote:

> To Barbara Webber, I am glad to wrote about the

> difficulties of

> fatigue. I retired 18 months ago at age 55 because

> I just could not do

> my job anymore, even part time. I have heard of

> people beating the

> fatigue via will power but I haven't been able to.

> On three occasions I

> have nodded off during my aerobic exercise class.

> I also find that I

> no longer can handle stress as well.

>

> While fatigue is not life threatening or physically

> painful. It erodes

> you emotionally and that is hard to handle over the

> long run. My

> inspiration is the woman who wrote the book

> _Seabiscuit_. She had

> chronic fatigue syndrome and sometimes could not get

> out of bed. But,

> she researched and wrote this wonderful book. My

> goal is to do as much

> meaningful work and to get as much exercise at I

> can. I did a lot of

> internet research on volunteer opportunities in my

> community and found

> work I could do at home. Also I volunteer at the

> library twice a month,

> a sit down, low key job. With a lot of help from my

> hepatologist who

> contacted his PSC patients, I started a PSC support

> group and that keeps

> me busy but it is also emotionally difficult because

> some the group

> members are very sick.

>

> Anyway, after 18 months it has been hard emotionally

> because I expect to

> live with PSC for many more years. Sometimes I get

> depressed because my

> options are limited. Sometimes I am so sleepy I

> don't care. But, having

> some meaningful work is so helpful and I enjoy doing

> things that I

> couldn't do when I was working. I need to remind

> myself that PSC has

> not taken my life it has just changed my life.

>

> I hope other PSCers who suffer from fatigue will

> post. Day after day

> with only a few hours of active energy does wear you

> down sometimes and

> it's okay to share it with the group,.

>

> (Sacramento) dx UC and PSC 2001

>

__________________________________________________

June 21, 2006

Thanks , I appreciate your sharing...yes, I have been fighting

the depression that can kick in when you're fatigued all the time... I

kept thinking if I found " something I loved " I'd have more energy,

which is partly true, it does " pick me up " but I still get tired...I

keep hearing about pomegranite juice, wondering if you tried that?

I'm wondering if it comes in a pill, because I can't normally drink

juice since I also have diabetes....but I think being social is

certainly a plus, I find I can get " homebound " after too many days of

fatigue, and then I just don't want to go out....this is quite a

learning process...I can see how working with a support group would be

difficult, because it is hard to see others suffering that have the

same disease we do...it's a little scary sometimes.

Well, thanks again and I'll keep my prayers going for you and all of

us! You're lucky to be in CA - I just love it there!!!

> (Sacramento) dx UC and PSC 2001

>

June 21, 2006