misc

September 8, 2004

Hi ,

I could not possible reply any better than Amy just did. Amy really wrote

the truth and it honestly does take time to get to a place of acceptance. Please

know that it is perfectly normal and fine to have periods of anger, sadness

and everything else you are feeling. Be gentle with yourself and allow

yourself time to work through all the stages of grief that are associated with

the

loss of your expectation for good health.

There is no need to appear to be strong and courageous here either. We all

go through times where we feel scared of the uncertainty.

Your Aunt sounds like a remarkable lady, and I am so sorry for your loss. I

hope you can take your treasured memories of her and continue to draw

strength, but remember that she too went through the stages of grief. Perhaps

she

didn't let you see her going through those stages, but they really do accompany

any loss. I am concerned that you might set too high of a goal for yourself to

be quickly organized and calm but be patient with yourself because it IS a

process. We are all a work in progress and it just takes time.

In the meantime, we are here to support you when you no matter how you are

feeling that particular day. This is a place where you can be completely open

and honest about what you are feeling and dealing with on a day by day basis.

I hope you get good news on your labs when you meet with your Neph. I know

it is hard waiting for results.

Take care of yourself, and just try to take each day one step at a time.

In a message dated 9/8/2004 3:11:47 PM Pacific Daylight Time,

brenda.schorn@... writes:

> I have been home this week helping to get the kids back into school and

> working on cleaning and organizing our home after the long and hectic

> summer. I go to see my neph on Monday to sit down and talk to her about

> this disease for the first time since I found out the biopsy results and

> heard her message confirming diagnosis on my voicemail. Ugh. I am

> anxious, nervous and excited to finally get some answers about where my

> kidneys sit health wise at this point. I have so many questions to go

> over with her, all of them I have learned from this amazing group of

> people here. Thank you.

>

> I don't really know what to make of it all yet. I go through so many

> emotions in the course of one day, denial, anger, fear. I am no where

> near acceptance yet. I know that my imagination is working overtime

> right now because I don't have any answers. I went in for my blood work

> yesterday and wanted to know the results so that I could share them with

> you all and get some feedback. I am not very patient. I am trying to be

> really strong and pretend like I am not worried but these tests up to

> this point have been going on for months now and I have known something

> was wrong...but I don't want to worry my kids or my husband or anyone. I

> am trying to be strong and I am so thankful for this group where I can

> just break down and vent if I need to or share my fears without worrying

> about scaring any of you that I may be falling apart...lol

>

> My aunt passed away last year from leukemia, it happened very fast, a

> matter of 6 months. She had some marrow transplanted that failed and

> then soon afterward died. I keep thinking of her and how organized she

> became in her life and calm she was throughout. I keep trying to find

> strength in her lessons. I guess that is why I am taking this week to

> clean the garage, go through closets, and organize etc. When I sit still

> for too long I start to worry about the future and what all of this will

> mean. I also know that I have to start accepting this diagnosis and

> changing my lifestyle to better improve my quality of life in the short

> term and long term. You are all very good reminders to me of that and I

> am learning from you all. So thank you again for sharing and for letting

> me share.

>

> Best to all, S - Vancouver, BC Canada

>

September 8, 2004

Jing - best of luck and healthy recovery.

- I hope your husband is a match and you can get that kidney soon.

Rita, Amy - I sure hope you are starting to feel better or at least a

little better very soon. I know how hard it is to keep our energy up

when it's the last thing we really have available to us.

Shara - I hope the biopsy went ok...let us know when you can.

Phyllis - all the best to you. My very best girlfriend had a massive

brain aneurism last summer and emergency surgery, today she is here to

tell the tale and is walking and relatively back to a normal life once

again. She has been devastated however emotionally by the trauma and I

don't know if she will soon recover from that experience. My best to you

and your sister.

I have been home this week helping to get the kids back into school and

working on cleaning and organizing our home after the long and hectic

summer. I go to see my neph on Monday to sit down and talk to her about

this disease for the first time since I found out the biopsy results and

heard her message confirming diagnosis on my voicemail. Ugh. I am

anxious, nervous and excited to finally get some answers about where my

kidneys sit health wise at this point. I have so many questions to go

over with her, all of them I have learned from this amazing group of

people here. Thank you.

I don't really know what to make of it all yet. I go through so many

emotions in the course of one day, denial, anger, fear. I am no where

near acceptance yet. I know that my imagination is working overtime

right now because I don't have any answers. I went in for my blood work

yesterday and wanted to know the results so that I could share them with

you all and get some feedback. I am not very patient. I am trying to be

really strong and pretend like I am not worried but these tests up to

this point have been going on for months now and I have known something

was wrong...but I don't want to worry my kids or my husband or anyone. I

am trying to be strong and I am so thankful for this group where I can

just break down and vent if I need to or share my fears without worrying

about scaring any of you that I may be falling apart...lol

My aunt passed away last year from leukemia, it happened very fast, a

matter of 6 months. She had some marrow transplanted that failed and

then soon afterward died. I keep thinking of her and how organized she

became in her life and calm she was throughout. I keep trying to find

strength in her lessons. I guess that is why I am taking this week to

clean the garage, go through closets, and organize etc. When I sit still

for too long I start to worry about the future and what all of this will

mean. I also know that I have to start accepting this diagnosis and

changing my lifestyle to better improve my quality of life in the short

term and long term. You are all very good reminders to me of that and I

am learning from you all. So thank you again for sharing and for letting

me share.

Best to all, S - Vancouver, BC Canada

September 8, 2004

,

Thanks for the well wishes...I'm hoping my darn nose starts to co-operate

soon. It seems like if it's not one part of my body giving me fits it's another

this past year. )

Everything you are feeling is perfectly normal. Allow yourself to feel

these things, as hard as it can be sometimes, as they do lead down the road to

acceptance. I still have days where I get so mad, or so scared, or so in denial

that my husband has to do a double take, then he recognizes it and talks me thru

it....or I post here and get support whenever I need it. Play it safe though as

you progress thru all these feelings and if you find things becoming too

overwhelming please talk to your doctor. Sometimes a therapist or councilor

short term can do wonders for your mental health, just as important as your

physical health. Your aunt sounds like a very strong woman though behind closed

doors she too went thru all the feelings you are going thru. It's all a part of

the grieving process and the human mind needs these things to help us come to

terms with any loss, be it the loss of a life or the loss of our good health.

I know what you mean about the moving to keep from thinking about it. The

weeks prior to my biopsy I did everything I could to keep from thinking about my

condition....including going down to visit my in-laws the week prior. While we

were there my father in law ended up in the hospital with heart difficulties and

had two stints placed. I realized then that I could endure what this disease

threw at me since at least I can see it coming....he had no warning. He came

home from the hospital just as I went in for my biopsy, we still compare diet

notes and lab tests to this day. Sort of a buddy check system to keep us on

track with our health.

Your husband can be a strong shoulder when you need it most. I know I tried

very hard not to " burden " mine anymore than I had too but in doing so it caused

major stress between us. He finally told me " Please let me know how you are

feeling and what your needs are immediate and future. If I don't know I can't

adapt to the changes we need to go thru together. " Now we talk about everything

and I don't feel like I'm trying to hide behind a fake *smile* " everything's

fine " when it truly isn't. My kids even come to all my neph appointments from

the first one, to the one where my neph discussed just how fast I was sliding

toward dialysis *that one was not pretty let me tell you*, to today. They ask

questions of my neph and he answers them directly. I won't say they haven't had

stress but letting them into the whole picture has eliminated the feelings of

knowing something is wrong but they are too afraid to ask what it is. My neph

is so used to them being there that when they stayed home with my husband for my

July appointment the first thing out of my nephs mouth when he walked in the

room was " Where are the kids?! " and told me to let them know he missed them

when I got home. )

All in all you will get thru this and remember you are not alone with this.

Just keeping that in mind got me thru some very dark nights in the beginning and

still does to this day. You can always vent here and we know you aren't falling

apart because we have been there walking ahead of you. (I can't tell you how

many tears have hit my keyboard over the past year but they all have had a

purpose.) Please let us know how your neph appointment goes on Monday, I'll be

thinking of you.

Amy