Re: Merry Christmas

[Guest guest]

Thank you ... Hope you're all ready for tomorrow.. Take it easy and

enjoy!

Hugs

Vicki

[Guest guest]

Hi Rita,

I am glad you wrote that you have been depressed, not glad that you are

depressed, but glad that you can talk about it. Depression is a fairly normal

part

of the process with chronic illness. It is also a normal part of going

through the stages of grief leading up to acceptance. When you are diagnosed

with

a chronic illness, it is a loss, and all losses can take you through the

stages of grief. Sometimes we think grief is just for when someone we love

dies,

but that is not true. Any significant loss can lead us through the stages of

grief.

I myself went through a rather severe depression the summer of 2000, or what

is summer of 2001? In any case, even though I have had IgAN for over 25

years, I started having significant problems around that time, and I still went

through the stages of grief all over again. There is no shame in feeling

depressed.

I just want you to remember that you have a kidney family here who truly

understands and supports you completely!

I hope you feel better soon!

[Guest guest]

Merry Christmas to you too, Rita.

Try not to let IgAN get you down. If you ever, and I mean ever, get to the

point where you need dialysis, cross that bridge when you get there. I did,

and I did get to the other side safely (and it was way easier than I ever

imagined it would be before I got to that point). In the meantime, if it

were me, I would concentrate on the things you can control, and forget the

rest. When you do even little things that you can do, it gives you a feeling

of empowerment. Things you can do are making sure your blood pressure is

well-controlled (with the prescribed medication, and by not eating too much

salt), eating a well-balanced diet with no extremism either way, good

moderate exercise. And then, relax in the knowledge that you are doing

everything you can, and do other things that have nothing to do with IgAN or

disease.

Pierre

Merry Christmas

> I've been sort of quiet lately...a bit depressed but still hanging in

there. You all give me hope and strength and it truly does help. Thank you

all for always being there for me and others. I have learned so much. May

you all have a blessed Holiday season. With affection, Rita

>

>

> Rita Nucciarone

>

>

[Guest guest]

Hi Helen,

That is one of the problems with IgAN. You look fine on the outside, and

that allows people around us to sometimes refuse to accept that we have a

disease

that brings us limitations. If it were a broken arm or something obvious, it

would be a different story. I run into that myself. All the more reason to

listen to your body and be observant of your limitations.

In a message dated 12/26/2003 8:01:38 AM Pacific Standard Time,

ritanuch1014@... writes:

> Many people at work don't even believe that I have this Iga thing..

[Guest guest]

HI Amy,

Boy I wish I could figure out how to get loved ones who insist on staying in

denial to accept that IgAN is a serious condition! What I had to learn is

that my greatest responsibility was to me and listening to my body. I too was

one who pushed myself relentlessly. After ending up in the hospital one too

many times, I finally got it through my head that I had to limit myself

according

to what I was able to do. I finally understood that if I didn't take care of

myself first, then I was not going to be any good for my husband or my

children.

I also found that as long as I was nearly killing myself trying to do it all,

I was feeding the perception that I WAS OK. Once I started saying no when I

needed to, then my family slowly started to understand more that I really

honestly did have limitations.

I do understand the guilty feelings about not being able to do everything you

want to for your family, but it is a matter of putting the important things

first, and trying (I know this part is hard) to let other things go.

I don't know if this helps or not, but I completely understand exactly how

you feel Amy. I think as women, wives and mothers, we sometimes try to do it

all at the expense of ourselves, and that just doesn't work for long with IgAN.

[Guest guest]

My wife is a little like that at the moment, burying her head in the sand! I

keep talking about lifestyle changes and stuff and it seems to whoosh over her

head as if she doesn't want to believe there's a potential problem we have to

face up to ..... I think people have to see a physical deterioration before they

accept things or perhaps, want to accept it? I know the feeling :o/

Re: Merry Christmas

Hi Helen,

That is one of the problems with IgAN. You look fine on the outside, and

that allows people around us to sometimes refuse to accept that we have a

disease

that brings us limitations. If it were a broken arm or something obvious, it

would be a different story. I run into that myself. All the more reason to

listen to your body and be observant of your limitations.

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[Guest guest]

Well I'm glad to see it's not just my husband in denial then. I don't think

he's looked at one thing regarding this disease yet and it's been 4 months since

diagnosis. He just expects me to do the research, make the changes and fill him

in on anything he needs to do...if he doesn't need to do anything then it's

good. It's like he sees me and I'm moving and working and doing things like

" normal " so I must be fine right? Ya right. There are days that I just wish he

would read thru something..even the IgAN support website so he would better

understand why I just had to lay down for a bit and so I didn't get things done

that I wanted to (which then leads to frustration on my part). I find myself

pushing myself to be more like I was before this started and I'm finding it's

biting me in the rear big time. So once again I have to remind myself to SLOW

down and perhaps he'll realize that I just can't move at the pace I used to

before...unless I want to feel horrid all the time.

As a seamstress leaning over my machines or over the table to cut things now has

to be done at intervals...I'm finding the days of 8-12 hours straight sewing are

gone due to the back strain....which leads to 2 days of bad flank pain and then

to missed work due to pain. I've never been one to pace myself, unless we are

talking fast paced. My husband is having a hard time adjusting to this fact as

my income has dropped due to not being able to complete as much in any given

day. Not that we need my income per-se but when you are used to having that

extra....well it's hard to give up completely...for both of us.

So...Any hint or tips to get those closest to you to accept chronic illness?

And any hints regarding how to get over the guilt of not finishing things during

the day from those of you who have lived with this longer than I? (I think the

worst guilty feelings come when I don't have the energy to do what I would like

with my kids.)

Well that got a bit longer than I intended...guess there was more on my mind

than I thought.

Amy

Re: Merry Christmas

Hi Helen,

That is one of the problems with IgAN. You look fine on the outside, and

that allows people around us to sometimes refuse to accept that we have a

disease

that brings us limitations. If it were a broken arm or something obvious,

it

would be a different story. I run into that myself. All the more reason to

listen to your body and be observant of your limitations.

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[Guest guest]

At the risk of having the male half of this list jump on me, I think a

number of guys are just that way. I think in an earlier post, Connie

mentioned her husband did something similar. It's a mechanism I really

don't understand - even although my husband did a variant of the same denial

when he was sick. His denial was so extreme that I really believe that he

did not know what type of cancer he had. I admit, it came off looking very

heroic and noble to everyone around him but me!

I think some people (generally the male half) are wired to believe that

there isn't a problem as long as they don't have to deal with it - and since

they're invested in there not being a problem, things can get pretty

extreme. Trying to show that there IS a problem usually isn't the way to

go about it because the impulse is to resist it is very strong. Some very

close friends have a very sick kid - far sicker than most of us will ever

be. The kids treatment is far more time-consuming than the most grueling

dialysis schedule. It is amazing how out to lunch the dad (an otherwise

brilliant, wonderful, considerate person) is with it all.

I think this circles back to the " splitting " I mentioned a week or so ago.

Having a disinterested third party speak to your husband might help.

Finding a counselor who specializes in chronic illness (they do exist out

there!) might help. Hearing some guys from the list might be very

useful.... but I'm reluctant to trigger any gender wars - we've had enough

of those!

" Slowing down " - especially for a parent - is close to impossible. I don't

know if guilt-free slow down is possible (at least it wouldn't be for me -

but that has more to do with how I'm wired!). I think a lot of it has to do

with (OK, I'm trotting out cliches here) establishing priorities and setting

limits with the people - but I realize it's very, very hard.

Cy

Re: Merry Christmas

>

>

> Hi Helen,

>

> That is one of the problems with IgAN. You look fine on the outside,

and

> that allows people around us to sometimes refuse to accept that we

have a disease

> that brings us limitations. If it were a broken arm or something

obvious, it

> would be a different story. I run into that myself. All the more

reason to

> listen to your body and be observant of your limitations.

>

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

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>

>

>

[Guest guest]

No suggestions from me, I'm afraid! Sorry! Maybe over time they'll come to terms

with things?

I don't have the pains you seem to endure but I certainly feel tired a lot more

than I used to!

Re: Merry Christmas

Well I'm glad to see it's not just my husband in denial then. I don't think

he's looked at one thing regarding this disease yet and it's been 4 months since

diagnosis. He just expects me to do the research, make the changes and fill him

in on anything he needs to do...if he doesn't need to do anything then it's

good. It's like he sees me and I'm moving and working and doing things like

" normal " so I must be fine right? Ya right. There are days that I just wish he

would read thru something..even the IgAN support website so he would better

understand why I just had to lay down for a bit and so I didn't get things done

that I wanted to (which then leads to frustration on my part). I find myself

pushing myself to be more like I was before this started and I'm finding it's

biting me in the rear big time. So once again I have to remind myself to SLOW

down and perhaps he'll realize that I just can't move at the pace I used to

before...unless I want to feel horrid all the time.

As a seamstress leaning over my machines or over the table to cut things now

has to be done at intervals...I'm finding the days of 8-12 hours straight sewing

are gone due to the back strain....which leads to 2 days of bad flank pain and

then to missed work due to pain. I've never been one to pace myself, unless we

are talking fast paced. My husband is having a hard time adjusting to this fact

as my income has dropped due to not being able to complete as much in any given

day. Not that we need my income per-se but when you are used to having that

extra....well it's hard to give up completely...for both of us.

So...Any hint or tips to get those closest to you to accept chronic illness?

And any hints regarding how to get over the guilt of not finishing things during

the day from those of you who have lived with this longer than I? (I think the

worst guilty feelings come when I don't have the energy to do what I would like

with my kids.)

Well that got a bit longer than I intended...guess there was more on my mind

than I thought.

Amy

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[Guest guest]

*folds arms, taps foot and glares* )

Seriously though, I'm not convinced that it's a guy thing to be honest. I just

think some people deal with things this way!

Re: Merry Christmas

At the risk of having the male half of this list jump on me, I think a

number of guys are just that way. I think in an earlier post, Connie

mentioned her husband did something similar. It's a mechanism I really

don't understand - even although my husband did a variant of the same denial

when he was sick. His denial was so extreme that I really believe that he

did not know what type of cancer he had. I admit, it came off looking very

heroic and noble to everyone around him but me!

I think some people (generally the male half) are wired to believe that

there isn't a problem as long as they don't have to deal with it - and since

they're invested in there not being a problem, things can get pretty

extreme. Trying to show that there IS a problem usually isn't the way to

go about it because the impulse is to resist it is very strong. Some very

close friends have a very sick kid - far sicker than most of us will ever

be. The kids treatment is far more time-consuming than the most grueling

dialysis schedule. It is amazing how out to lunch the dad (an otherwise

brilliant, wonderful, considerate person) is with it all.

I think this circles back to the " splitting " I mentioned a week or so ago.

Having a disinterested third party speak to your husband might help.

Finding a counselor who specializes in chronic illness (they do exist out

there!) might help. Hearing some guys from the list might be very

useful.... but I'm reluctant to trigger any gender wars - we've had enough

of those!

" Slowing down " - especially for a parent - is close to impossible. I don't

know if guilt-free slow down is possible (at least it wouldn't be for me -

but that has more to do with how I'm wired!). I think a lot of it has to do

with (OK, I'm trotting out cliches here) establishing priorities and setting

limits with the people - but I realize it's very, very hard.

Cy

----------

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[Guest guest]

Oh dear none from me either Amy I am afraid. I think understanding and

the will to want to learn more about a beloved’s illness has to come

from the partner concerned. You can lead a horse to water etc!! Sorry

about the cliché but I am lucky in that I have a very understanding

husband, and a brilliant GP, so they are all the support I need close

by. Family members are more difficult, because this is not a visible

condition, understanding seems to come hard to some of them.

If I were you I would make it my goal to know as much as I wanted to

know, and every now and then just drop highlights of it into a

conversation, nothing to heavy, or you may get that glazed look. It

could be that your partner is very confused and afraid right now and is

doing the proverbial ostrich impression. Give him time and he may come

around. As for the guilt of not having the energy to do what you used

to, been there done that. I had to give up my job in the end, which was

hard, and I do have days where I get frustrated by this darn fatigue,

but now I praise myself on the things I can do. Ok the house may not be

as pristine as it was, and the lawn not mowed every week during the

summer, but there comes a point when you have to concentrate on you. I

set myself daily tasks, small ones, with at least half the day set up

for leisure, which in my case is my rescue for guinea pigs. Time spent

with them, is time I am on a different level altogether, and have no

pressures.

I feel your frustration, but at the moment the only person who will be

upset is you……give yourself a break, and cut yourself some slack for a

bit. Your partner will comes to terms with this eventually.

Best wishes

Re: Merry Christmas

No suggestions from me, I'm afraid! Sorry! Maybe over time they'll come

to terms with things?

I don't have the pains you seem to endure but I certainly feel tired a

lot more than I used to!

Re: Merry Christmas

Well I'm glad to see it's not just my husband in denial then. I don't

think he's looked at one thing regarding this disease yet and it's been

4 months since diagnosis. He just expects me to do the research, make

the changes and fill him in on anything he needs to do...if he doesn't

need to do anything then it's good. It's like he sees me and I'm moving

and working and doing things like " normal " so I must be fine right? Ya

right. There are days that I just wish he would read thru

something..even the IgAN support website so he would better understand

why I just had to lay down for a bit and so I didn't get things done

that I wanted to (which then leads to frustration on my part). I find

myself pushing myself to be more like I was before this started and I'm

finding it's biting me in the rear big time. So once again I have to

remind myself to SLOW down and perhaps he'll realize that I just can't

move at the pace I used to before...unless I want to feel horrid all the

time.

As a seamstress leaning over my machines or over the table to cut

things now has to be done at intervals...I'm finding the days of 8-12

hours straight sewing are gone due to the back strain....which leads to

2 days of bad flank pain and then to missed work due to pain. I've

never been one to pace myself, unless we are talking fast paced. My

husband is having a hard time adjusting to this fact as my income has

dropped due to not being able to complete as much in any given day. Not

that we need my income per-se but when you are used to having that

extra....well it's hard to give up completely...for both of us.

So...Any hint or tips to get those closest to you to accept chronic

illness? And any hints regarding how to get over the guilt of not

finishing things during the day from those of you who have lived with

this longer than I? (I think the worst guilty feelings come when I

don't have the energy to do what I would like with my kids.)

Well that got a bit longer than I intended...guess there was more on

my mind than I thought.

Amy

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[Guest guest]

Rita,

You're not alone. It's pretty hard not to waiver on diets during the

Christmas holiday

Pierre

RE: Merry Christmas

> Hi Phyllis:

>

> Wow - sounds like you have been through a lot too! I'm happy that the

density on your chest was nothing to be concerned about. When I was at the

ER, I was having severe chest pains, that's why they did the CT Scan. When

the doctor told me the results, he was quite abrupt and said " I can't tell

you if it's cancer, you will nee to get another scan in 2 months to see if

the nodule is growing " I just about died, I didn't expect to even hear the

word cancer. I too have the artheroscleroris and progressive IgAN. I have

eaten everything in site, that isn't glued down. I blame it on the

prednisone. My face is unrecognizable to myself....so round - I feel like

the pillsbury doughgirl - LOL.. I see my neph on Tuesday and I wish I

wasn't going....he has such faith in me, but I'm afraid I've failed this

month. Haven't had control over anything. I will try to get back on track,

now that the holidays are over. I'll keep you posted on my CT Scan on Jan

6th. Thanks for sharing....Rita

[Guest guest]

----- Original Message -----

From: Rita Nucciarone

" I have eaten everything in site, that isn't glued down. I blame it on the

prednisone. My face is unrecognizable to myself....so round - I feel like the

pillsbury doughgirl - LOL.. "

Rita I could have written those very words...holiday cookies are not my friends.

I'm having the same face problems too..I avoid mirrors like the plauge. My

husband keeps saying " it's not so bad and it will go away " that was until I had

my kids take a picture of me now and then I cut and pasted it next to a similar

picture taken of me pre-prednisone. He gasped when I showed it to him and said

he hadn't realized just how much of a change there was since it happened

gradually. I should post the picture on yahoo so you can see it....although I

don't want to scare anyone who is looking at having to start predinsone

treatments! :-D I'm finding the worst part of it all is the constant tension

you feel in your face due to the swelling, I feel like I'm walking around with

my eyes half closed all the time. grrrr...wears on me quite a bit over time.

Hope your CT scan sends you good news.

Amy

[Guest guest]

I tend to simply drop stuff into conversations! I guess part of the issue with

this is the uncertainty huh? I mean for most of us, it will simply be an

annoyance!?

Re: Merry Christmas

Well I'm glad to see it's not just my husband in denial then. I don't

think he's looked at one thing regarding this disease yet and it's been

4 months since diagnosis. He just expects me to do the research, make

the changes and fill him in on anything he needs to do...if he doesn't

need to do anything then it's good. It's like he sees me and I'm moving

and working and doing things like " normal " so I must be fine right? Ya

right. There are days that I just wish he would read thru

something..even the IgAN support website so he would better understand

why I just had to lay down for a bit and so I didn't get things done

that I wanted to (which then leads to frustration on my part). I find

myself pushing myself to be more like I was before this started and I'm

finding it's biting me in the rear big time. So once again I have to

remind myself to SLOW down and perhaps he'll realize that I just can't

move at the pace I used to before...unless I want to feel horrid all the

time.

As a seamstress leaning over my machines or over the table to cut

things now has to be done at intervals...I'm finding the days of 8-12

hours straight sewing are gone due to the back strain....which leads to

2 days of bad flank pain and then to missed work due to pain. I've

never been one to pace myself, unless we are talking fast paced. My

husband is having a hard time adjusting to this fact as my income has

dropped due to not being able to complete as much in any given day. Not

that we need my income per-se but when you are used to having that

extra....well it's hard to give up completely...for both of us.

So...Any hint or tips to get those closest to you to accept chronic

illness? And any hints regarding how to get over the guilt of not

finishing things during the day from those of you who have lived with

this longer than I? (I think the worst guilty feelings come when I

don't have the energy to do what I would like with my kids.)

Well that got a bit longer than I intended...guess there was more on

my mind than I thought.

Amy

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[Guest guest]

> When the doctor wanted to put me on prednisone, I replied, " Well, I might

as well tie a piece of celery around my neck! "

This had me rolling on the floor! Funny!

Cy