To Ali From

July 25, 2006

Ali,

I know you have

a similar mother’s heart. I have seen it in your posts regarding

allowing your son to be your donor. I know that you have struggled with

that. I can’t imagine being in that situation, but I also know how

your son feels and how he wants to do what he is doing for you. You are

not a wimp. I am sure is giving you a good boost. She is

really good at doing that to whoever needs it. You all amaze me with what

you able to do. I feel for you all. I see it in him on a daily

basis though in what he is not able to do and it frustrates him…and me.

I see him getting grouchy at the end of the day. I see him lashing

out. I want him to be able to operate at his highest level, but I see him

not being able to and I don’t know what to do for him. I wish I

could do more. I am frustrated with Pitt. They have not gotten back

to us with any scheduling for Noah. So I guess we are stuck with Hershey

where I have to fight tooth and nail for every thing that he needs. I am

very frustrated. I am frustrated after going to my own appointment

yesterday for a skin condition and hearing the doctor (talking to the resident,

neither of which knew I was just finished with a medical transcription class),

say that I was just basically so stressed that I should be put on BuSpar so I

won’t pick at myself while I sleep. I left in tears. I guess

I have OCD from all this stress. I just don’t know what else to do…how

much more I can control. The resident was not pleased with the attending

and did not prescribe any of the recommended items. Just some topical

stuff, but I still walked out feeling psycho. I felt like it was a male

doctor (no offense guys) saying I was a woman there with an all in my mind

condition.

So, that is

where I am at and why my $150 self-therapy might not have been too far from

what I am needing. HA!

Love and

blessings,

P.S. For

all you Yahoo Instant Messengers… mariapamom is my sign on there.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

Dear ,

Bless your mother's heart! You are a great mom and a loving one too. After

reading your post I realized that I have be thinking about this particular conundrum

for awhile. I too am so tired that I could scream some days. And I feel that I

have no energy to do the one thing that’s identifies me as me - art and

graduate school. I keep thinking I am being a wimp. But then I run it by

and she gives me a good talking to and I feel better. The thing is,

even though you are tired you can still carry on. I know this because that's

what I am doing now. And so will Noah. As he has not much to judge against it

may help him to keep going. The big thing is to keep going as much as you can

and remember most people run out of steam and pick and choose what they want to

do and not do. He will get through this because of you. It's that simple.

Love,

Ali

July 25, 2006

>

> I wish I could do more. I am

> frustrated with Pitt. They have not gotten back to us with any

scheduling

> for Noah. So I guess we are stuck with Hershey where I have to

fight tooth

> and nail for every thing that he needs. I am very frustrated.

,

I can't speak to the other issues of frustration but I would

encourage you to keep at it with Pitt if that is where you feel he

needs to be. Be patient, getting a new patient into the system for a

specialty can take some time but once you are in things tend to run a

bit quicker. When I was first referred to Transplant Center to be

seen by the Hepatologist I waited 3 months to get an initial

appointment but after I was " in the system " appointments come much

more quickly. This is not unusual, but I can't speak to Pitt

specifically.

in Seattle

July 25, 2006