Daily Life? and diet and other good things

[Guest guest]

I'm glad this topic came up. Daily life and its quality is really the

basis of how we live and feel about ourselves and our choices in life.

I have gone through a long period of depression (about 2 years even

with an SSRI antidepressant, Lexapro) and it affected everything I

did, thought, felt. I thought I was procrastinating too much, I felt

tired tired tired all the time (sand-in-the-eyes tired), and I felt

mostly like life was a pain in the butt. Sure, I tried every single

day to change how I felt, my attitude, activities, all of that

willpower stuff. Meditation helped a lot but I even resisted that. I

think 's description of being " mad " describes it best. I was

mad at God, god, the universe, whatever you believe in as a higher

intelligence. It just didn't seem fair to me. I have already gone

through a lot of very difficult times in my life and worked hard to

get better, be better, share my talents with the world. All that good

stuff. Where was my reward? I get diagnosed and sicker than hell when

I was one year into a 3-year graduate program that I wanted to do

really well in, enjoy, reap the benefits of. And I was sick. And

tired. And in a bad mood. And working harder than ever to achieve what

I felt I was capable of achieving. I didn't start out in graduate

school saying I wanted to make all As, but I did want to excel. And

the grades are the payoff.

I did make all As (just 2 A-minuses that brought me to a 3.97 GPA).

And I graduated on time with a creative project 100 pages long that

was a memoir focusing on my incest and emotional abuse as a child. I

finished, I was proud of myself, and flat as a pancake. I had been in

the hospital 3 times between Dec. 2006 and May 30, 2007. I had to

reschedule my oral defense because I was in the hospital with

cholangitis, an aspiration pneumonia from ERCP (needed 2 stents), and

a big owie liver biopsy performed with CT scan. I was skin and bones

and weak as a kitten when I got out. I went to my orals and my

committee loved what I had done with my memoir, and I got another A.

For my work. My life was getting a C-minus at that point. If that.

I didn't know if I could work fulltime, I was scared, not getting any

more student loans, and sleeping 10-12 hours a day. I meditated daily

and started walking in the nearby fantastic park when I could. My

strength started to return. I adhered to my gluten-free diet (and it

really IS easy, no kidding). But I was still depressed and confused

and not feeling all that great physically.

In early September I went to see my hepatologist, Dr. Forman, a

wonderful physician and human being, and she was more concerned with

my depression than my budding good health. She sent me to my internist

and he prescribed an atypical antidepressant, Zyprexa, for me. It

works on the dopamine pathways in the brain and not the serotonin

which is what the SSRIs work on. I finally agreed to take it (I hate

taking meds) and even after one dose I could feel the fog begin

lifting. After two days there was no doubt it was working. In the

meantime, I was able to look back and see that I had been doing all

the right things -- starting and staying on a gluten-free diet (on the

advice of my first cousin Vann, a medical researcher and professor at

Duke Med. School), exercising in a reasonable manner with walking and

housework and babysitting my main activities, meditating, writing

daily, and finding wonderful writing and tutoring work to take the

place of my dream of being a college professor when I completed my

master's degree.

No, life is not the same. But it might be better. I had a lot of

choices before PSC, and the disease made me narrow down my choices. It

also made me realize that the planet Earth is a good place to be (as

long as possible), that good things do come to me, and that my friends

and family love me endlessly, as I do them.

Okay, I'm a natural storyteller, but I wanted to tell this story. It

has a good ending. I have wonderful doctors who really care about me.

And I have this group where I can write this type of story and you

understand. I was hospitalized last week, sick most of the week. I

turned on a dime, it seemed, but i can look back and see I was getting

sick ever so subtly over the period of a week. On Monday night I

started feeling chilled. Felt that for about 15 minutes, got up and

looked at the 72-degree reading on the thermostat, and realized

cholangitis was letting itself be known. Within an hour I had a fever

of 103.4 and feeling like absolute crape. Turns out I also had a

urinary tract infection; ERCP by Dr. Norio Fukami (who is fantastic)

revealed early stages of stenosis which they were able to open with a

jagwire and not have to place stents. I got myself to the doctor in

time. But it is totally weird to be feeling fine, even great, and be

reduced to a mass of body aches and fever and awful chills all that

same time in one hour's time. I try to pay attention and get the

thermometer out asap.

I apologize for the length -- or not. I hope you enjoy the read and I

hope to hear from you -- either on the list or privately.

Thanks for listening,

Dana

PSC 2-1-06, age 60 female with a Master's in Humanities focusing on

20th and 21st century English literature and philosophy, primarily

Modernity, beginning with the Age of Enlightenment......ahhhhhhhh

Posted by: " McGloin " lmcgloin@... lmcgloin

Date: Mon Oct 1, 2007 1:06 pm ((PDT))

My biggest question is what do most PSC patients feel like on a regular

basis? Is it typical to one day feel GREAT, then 12 hours later feel

like you've been hit by a bus?

[Guest guest]

>

> No, life is not the same. But it might be better. I had a lot of

> choices before PSC, and the disease made me narrow down my choices. It

> also made me realize that the planet Earth is a good place to be (as

> long as possible), that good things do come to me, and that my friends

> and family love me endlessly, as I do them.

========================

Superbly written, Dana!!!!! You have portrayed life with PSC vividly,

poignantly and accurately. (My hats off to anyone who can grasp and

digest philosophy, much less while coping with PSC!!!)

When I was diagnosed, I had just started back to college to (finally!)

finish my degree so that I could teach (middle school math & algebra).

I was taking 2 classes online and was struggling mightily just to do

that. The fatigue has been moderate to severe most of the time ....

utterly crushing at other times. Now, with HE, there's no way I can

keep my brain focused to the extent necessary.

Even though teaching is out of my reach now, there are still other

things I can do and life is still very very good. As you say, this

disease makes you really wake up to the vital things in life and puts

life in a very different perspective. For myself, I've been very

grateful for that perspective. I may not be doing what I originally

wanted, but I think that life is now much richer and I get far more

out of life than I ever dreamed possible. Like Pollyanna, I've found

that every cloud has a silver lining .... you just have to look a bit

more diligently to find it sometimes!

Regards,

Carolyn B. in SC