Re: How does everyone cope - Ginger

September 27, 2005

Ginger, I am so sorry for everything that you are going through.I can relate to

what you are going through. I was diagnosed with a bladder disease and uteran

disease that are both extremely painful with in a year of being diagnosed with

IgaN. I was in such severe pain that I almost went on disability. I had two

diferent surgeries to remove the endometriosis and the other put my bladder

disease into remission until recently. Fatigue and pain are hard to deal with I

guess I have tried to accept this as my new normal. I will admit that I have

alot of bad days because of it. How can you not? But I try and not let it

control my life. I try and enjoy the little things in life, I try and keep busy

so I won't think about it and take it easy and rest when i need to. I hope

things getter better for you and I hope that they can figure out what is going

on. Just know that we are all here for you whenever you need to vent. Take care

of yourself!

Jill H

Ginger Pierce darlingrose@...> wrote:

I'm curious how everyone else is dealing with their kidney disease, life,

work, family, etc. I have so many different health problems, aside from my

kidney disease that I don't know if I am ever going to survive all this. I

recently quit my job because i was having undiagnosed stomache problems,

nausea, vomiting, etc. I had abdominal ultrasound, endoscopy, ct scan, and

an mri.. nothing was found except a hietal hernia which has nothing to do

with the stomache pain. I'm tired all the time, no energy, and I don't know

how I will manage to keep a job.

Does anyone else face similar dilemmas?

What can I do?

Ginger

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September 28, 2005

Thank you Jill, I appreciate that. I know that everyone here is going

through different things. I know there has been some discussion in the past

about people needing to go on disability. I guess sometimes I wonder if that

is my fate, I hope not, but at times like this I don't see how to get past

all the problems.

This wasn't meant to be a 'poor me' post, it was more of... I dont know.

Frustration.

Thanks

Ginger

>

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Re: How does everyone cope - Ginger

>Date: Tue, 27 Sep 2005 19:38:16 -0700 (PDT)

>

>Ginger, I am so sorry for everything that you are going through.I can

>relate to what you are going through. I was diagnosed with a bladder

>disease and uteran disease that are both extremely painful with in a year

>of being diagnosed with IgaN. I was in such severe pain that I almost went

>on disability. I had two diferent surgeries to remove the endometriosis and

>the other put my bladder disease into remission until recently. Fatigue and

>pain are hard to deal with I guess I have tried to accept this as my new

>normal. I will admit that I have alot of bad days because of it. How can

>you not? But I try and not let it control my life. I try and enjoy the

>little things in life, I try and keep busy so I won't think about it and

>take it easy and rest when i need to. I hope things getter better for you

>and I hope that they can figure out what is going on. Just know that we are

>all here for you whenever you need to vent. Take care of yourself!

>

> Jill H

>Ginger Pierce darlingrose@...> wrote:

>I'm curious how everyone else is dealing with their kidney disease, life,

>work, family, etc. I have so many different health problems, aside from my

>kidney disease that I don't know if I am ever going to survive all this. I

>recently quit my job because i was having undiagnosed stomache problems,

>nausea, vomiting, etc. I had abdominal ultrasound, endoscopy, ct scan, and

>an mri.. nothing was found except a hietal hernia which has nothing to do

>with the stomache pain. I'm tired all the time, no energy, and I don't know

>how I will manage to keep a job.

>

>Does anyone else face similar dilemmas?

>

>What can I do?

>

>Ginger

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported

>by donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

September 28, 2005

Ginger it is rather frustrating. I have compounded medical problems, and now a

new one (plantar fasciitis) that causes me to walk with constant pain in my

foot/feet. Thankfully good shoes seem to be helping quite a bit, though it

means I now have to wear shoes all the time (not an easy thing for a stay at

home/work out of the home mom to have to do). For a year there my husband would

ask " What doctors are we going to see this month? " I had at least 2

appointments monthly with different doctors for different things....my IgAN of

course, then a constantly infected salivary gland, draining tonsils enough to

warrant a tonsillectomy, severe drug reaction that left my skin peeling for

months, severe stomach problems that were traced to a hietal hernia being

constricted by the diaphragm, then numerous colds and infections on top of it

all....now the foot thing.

In the midst of it all I did end up closing down my business due to being unable

to function most days. I also saw a therapist just so I would have an outsiders

view and perspective...he helped me a ton since depression was setting in rather

quickly. Even though it was " one more doctor " to see, his appointments I looked

forward to! When you are in the midst of everything it takes all your energy

just to get thru the day, let alone to feel like you've accomplished anything.

Just wondering what sort of stomach problems you are having? I was in severe

pain and constantly nauseous for months. My gastro doc felt that the hietal

hernia was the cause of the pain for me due to the diaphragm constricting around

the hernia. Just wondering since we seemed to have a similar diagnosis but my

doctor felt the pain was due to the hernia.

As for how I cope, I do it on a daily basis. I plan for things but know that I

might have to cancel them due to how I MIGHT be feeling that particular day.

Thankfully I have friends who are understanding when I have to cancel the night

before or morning of a meeting. I keep a list of things I would like to

accomplish that week on my desk, I look at it every morning and do a few things

that I feel up to doing and cross them off. By the end of the week it's amazing

what I can have accomplished even during a bad week. You can also do this in

reverse by writing down what you've accomplished for the day on a sheet of paper

at the end of each day, then at the end of the week you have something to look

at in a positive light " Look at everything I was able to do this week! " I even

add things like " making my bed daily " , " vacuuming " and " doing a load of laundry "

onto my list since we tend to over look all the little things we do daily that

at the end of the day add up to our fatigue.

You will get thru this. Sending lots of calming energy your way.

Amy G.