Re: insights requested

[Guest guest]

Hi Brighid,

Your post hit close to home for me, so I wanted to respond to

you. I am 27 & have a 16 month old daughter. I began having

problems about the time I got pregnant with her. I was diagnosed

with PSC & Grave's Disease (Hyperthyroidism), within the first year

after giving birth to my daughter. During the first year of her

life, I suffered from chronic fatigue a great deal. I had a sense of

guilt because I did not have the energy to take care of her the way

that I thought I should. Since being diagnosed, having an ERCP that

cleared my main bile duct, and being on URSO, my energy level has

improved; but like you, I worry that in the future, I may not have

the energy to play with her like other moms, and I don't want her to

grow up with a " sick " mom. I am not letting that stop me from being

the best mom that I can be for her, and I try to just focus on the

here & now. Fortunately, she was already in my life before I had to

make a decision about whether I wanted to raise a child while

suffering from an incurable disease. I hate to think that I might

not have chosen to have her, had I known I had PSC.

I would not change anything - she brings a lot of joy to my life,

and I know that even though there may be obstacles to face in the

future, we will get through it. She makes my life worth living, and

she gives me the motivation and drive to take care of myself & fight

against my illness. Sometimes, reading these messages posted on the

support group makes one feel that there isn't a lot of hope for

someone with PSC, but transplants are successful, and we can enjoy

life. We shouldn't live our lives afraid to do things that healthy

people do; and we shouldn't live our lives focused on the health

problems we may face in the future. We're just like everyone else,

and we deserve a life just like everyone else.

Only you can make the choice of whether or not raising a child is

something that you feel comfortable with, and want to do... all I'm

saying is, don't let your illness make the decision for you.

Sindy

>

> I have been living with a PSC diagnosis for 4 years (I lurk here,

> sometimes). I have cirrhosis, enlarged spleen, have had one

> significant biliary infection and recently a few esophageal

ligatures

> to deal with varices. I have mild-to-moderate chronic fatigue --

but

> it is chronic. I eat well, exercise and take my meds. I'm in my

> mid-thirties, and while my spouse and I have ruled out trying to

get

> pregnant -- there's enough problems internally to make this

unlikely--

> the question of adoption or surrogacy (legal in Canada) is still

> before us.

>

> The specialist stressed that this will get worse, that I'm doing

well

> enough but it is progressing, and as things stand I can probably

> expect to end up needing a transplant. He says other symptoms will

get

> worse. Not all next week, or even in five years, but. Yeah.

>

> I have a lot of reservations about the demands of raising kids,

about

> how much of a physical toll it would take on me, and how much of

the

> primary caregiving my spouse would have to assume as time goes on.

I

> am selfish enough to want to hang on to my health as long as I can,

> and I'm also unselfish enough to not want to become a parent if I

am

> going to be the cranky fatigued lady, or worse yet, the in and out

of

> hospital lady.

>

> So. Yeah. Insights appreciated.

>

> B

>