Re: help!

July 24, 2002

Carol,

I was wondering did you say that you already told your kids the grandmother

is wanting their addresses? If you did, then I would tell the cousin that

they have her number or whatever, and know how to contact grandmother if they

want to. Honestly, I am really in no position to give advice, but if it were

me, I would tell the cousin to do whatever she felt she needed to do, but in

the future leave me out of it. That is probably easier said than done, I'm

sure. Good luck,

July 25, 2002

Hi Carol

you said

<<I know mother hasn't changed, so I still don't want

contact with her,>>

The most important thing is that you know what you want,

and that you act accordingly. It sounds like you do and

are!

your cousin said

<<Your mother has given me power of attorney for medical

reason. I really need to know how you feel about this.

She has prepared this document with the assistance of

[retirement home] and it is being mailed to me. It's all

happening so fast and I need to know how you will feel if I

have to make health

related decisions. Would you want me to call you first or

do you prefer that I act independent of you? Whatever your

answer is OK with me. >>>

It sounds like your cousin is not fogged, or at least not

trying to drag you into the fog. He's telling you where

things stand between him and your Nada, and saying whatever

you do is okay! Sounds good to me. It sounds like you can

perfectly honestly tell him to go ahead and act

independently, or keep you informed, or call you first - it

sounds like the way is clear for you not to look after

Nada. And that you will be able to hear what is happening

with her if you want, or not, if you don't want!

you said

<<I told cousin in my previous reply that it's the kids'

place to provide their addresses, not me. Yet, cousin is

still asking. >>>

Well, I don't remember if you already did this, but I think

it would be reasonable to tell your kids Nada wants to talk

to them, and tell them how to get in touch with cousin, and

at the same time tell cousin that the kids now know how to

get in touch if they want to. If they don't and cousin asks

again (is this where you're at now?) then remind cousin

that the kids know how to get in touch, and if they don't,

that is up to them and not you.

you said

<<I still don't have any obligation to do anything>>

That's right. You don't.

<<My mind can rationalize: no FOG. But my heart " feels "

FOGgy>>

I think that feeling will eventually wear off.

My Dad has been after me to get him in touch with my little

bro. Bro is not answering Dad's calls, emails, or snail

mail. Dad got frustrated with not hearing from bro and

started in on me: Do I know where bro is? Do I know why he

is not answering his calls and letters?? I told and keep

telling Dad that if bro is not answering him, that is

between him and bro, and that his questions about what bro

is doing are questions for bro so I am not answering them.

I know from my bro that the addresses and phone number Dad

has are correct, so I told Dad (repeatedly, and I expect to

need to do that several more times before the point sinks

in, if it ever does), that the info he has on how to reach

bro is correct, and if bro is not answering or responding,

that is between the two of them.

I did tell bro, the first time Dad pestered me, that Dad

was looking for him, but I don't call bro after every fog

message I get from Dad, because I don't want my

communications with bro to revolve around Dad looking for

him, and him not answering. I want my relationship with my

bro to be 'clean' and clear of Dad's fog.

At one time in the past I thought Dad did not have a

correct address for bro. I didn't give dad the address I

had for bro. Instead, I told him that if bro is not

contacting him, he probably is busy, and I'm sure he (bro)

will get back in touch with dad when the time is right for

him, but I can't make that happen. It is up to bro.

Hang in there, stand firm, the fog will burn off as the

light comes on!!

Take care,

Hope

--- Carol M wrote:

> Hi List Sisters!

>

> Brother arrived today, and he's been fine, so far.

>

> However, I got another email from the NH cousin today.

> The plot

> thickens. Rather than paraphrase, I'll copy & paste the

> pertinent

> parts:

>

> > Your mother has given me power of attorney for medical

> reason. I

> > really need to know how you feel about this. She has

> prepared

> > this document with the assistance of [retirement home]

> and it

> > is being mailed to me. It's all happening so fast and

> I need

> > to know how you will feel if I have to make health

> related

> > decisions. Would you want me to call you first or do

> you prefer

> > that I act independent of you? Whatever your answer is

> OK with me.

> > I just want to do what is right and I don't want to

> hurt or upset

> > anyone in the process. I will also call [your brother]

> about this

> > issue [sic, he's visiting me].

> >

> > Regarding the items in the basement.....there is no

> will since she

> > agreed to leave her assets to Hollenbeck. But if there

> is anything

> > in storage that she would like to take out for the

> kids, she can do

> > it anytime. So she will ask someone in the property

> department to

> > help her with this task. In the meantime, she has

> asked for

> > and 's addresses so that she can write to them. I

> don't have

> > their addresses, so if you will allow me to have them,

> I will

> > forward them to her.

> >

> > I'm doing this for my father [mother's 1st cousin, who

> has had a

> > stroke]. He wants to know that she is OK, but since he

> can't

> > provide much support, he has asked me to do it.

>

> I know mother hasn't changed, so I still don't want

> contact with her,

> but I don't want to be vindictive. Knowing her, she'll

> probably live

> another 5 years at least, even though it sounds like

> there's a medical

> emergency in the making. It's hard not to feel guilty.

> I told cousin

> in my previous reply that it's the kids' place to provide

> their

> addresses, not me. Yet, cousin is still asking. Cousin

> is using her

> father as the excuse for getting involved with mother. I

> still don't

> have any obligation to do anything, and it makes me feel

> selfish. My

> mind can rationalize: no FOG. But my heart " feels "

> FOGgy. What I'm

> feeling and thinking are two different things. I read

> the email to my

> brother, and he made no comments. He's fed up too, and

> he apparently

> doesn't want to get involved either. So now I'm supposed

> to call my

> kids with this latest development? All this stuff is

> swimming around in

> my head. I'll sleep on it, and maybe in the morning I'll

> have more

> clarity.

>

> I'm just thinking out loud. Thanks for listening.

>

> SmileS!

> Carol

>

__________________________________________________

July 25, 2002

I agree with everything Hope says, but I want to add my comments on the FOG

you are feeling. Each time I set boundaries I felt the FOG settling in.

But when I maintained my boundaries, the FOG would eventually clear. You

say you head knows it's just FOG, so I think that your FOG will clear also.

Keep telling yourself why you shouldn't feel foggy and eventually your heart

will agree.

Hang in there, each time it gets easier.

Re: Help!

Hi Carol

you said

<<I know mother hasn't changed, so I still don't want

contact with her,>>

The most important thing is that you know what you want,

and that you act accordingly. It sounds like you do and

are!

your cousin said

<<Your mother has given me power of attorney for medical

reason. I really need to know how you feel about this.

She has prepared this document with the assistance of

[retirement home] and it is being mailed to me. It's all

happening so fast and I need to know how you will feel if I

have to make health

related decisions. Would you want me to call you first or

do you prefer that I act independent of you? Whatever your

answer is OK with me. >>>

It sounds like your cousin is not fogged, or at least not

trying to drag you into the fog. He's telling you where

things stand between him and your Nada, and saying whatever

you do is okay! Sounds good to me. It sounds like you can

perfectly honestly tell him to go ahead and act

independently, or keep you informed, or call you first - it

sounds like the way is clear for you not to look after

Nada. And that you will be able to hear what is happening

with her if you want, or not, if you don't want!

you said

<<I told cousin in my previous reply that it's the kids'

place to provide their addresses, not me. Yet, cousin is

still asking. >>>

Well, I don't remember if you already did this, but I think

it would be reasonable to tell your kids Nada wants to talk

to them, and tell them how to get in touch with cousin, and

at the same time tell cousin that the kids now know how to

get in touch if they want to. If they don't and cousin asks

again (is this where you're at now?) then remind cousin

that the kids know how to get in touch, and if they don't,

that is up to them and not you.

you said

<<I still don't have any obligation to do anything>>

That's right. You don't.

<<My mind can rationalize: no FOG. But my heart " feels "

FOGgy>>

I think that feeling will eventually wear off.

My Dad has been after me to get him in touch with my little

bro. Bro is not answering Dad's calls, emails, or snail

mail. Dad got frustrated with not hearing from bro and

started in on me: Do I know where bro is? Do I know why he

is not answering his calls and letters?? I told and keep

telling Dad that if bro is not answering him, that is

between him and bro, and that his questions about what bro

is doing are questions for bro so I am not answering them.

I know from my bro that the addresses and phone number Dad

has are correct, so I told Dad (repeatedly, and I expect to

need to do that several more times before the point sinks

in, if it ever does), that the info he has on how to reach

bro is correct, and if bro is not answering or responding,

that is between the two of them.

I did tell bro, the first time Dad pestered me, that Dad

was looking for him, but I don't call bro after every fog

message I get from Dad, because I don't want my

communications with bro to revolve around Dad looking for

him, and him not answering. I want my relationship with my

bro to be 'clean' and clear of Dad's fog.

At one time in the past I thought Dad did not have a

correct address for bro. I didn't give dad the address I

had for bro. Instead, I told him that if bro is not

contacting him, he probably is busy, and I'm sure he (bro)

will get back in touch with dad when the time is right for

him, but I can't make that happen. It is up to bro.

Hang in there, stand firm, the fog will burn off as the

light comes on!!

Take care,

Hope

--- Carol M wrote:

> Hi List Sisters!

>

> Brother arrived today, and he's been fine, so far.

>

> However, I got another email from the NH cousin today.

> The plot

> thickens. Rather than paraphrase, I'll copy & paste the

> pertinent

> parts:

>

> > Your mother has given me power of attorney for medical

> reason. I

> > really need to know how you feel about this. She has

> prepared

> > this document with the assistance of [retirement home]

> and it

> > is being mailed to me. It's all happening so fast and

> I need

> > to know how you will feel if I have to make health

> related

> > decisions. Would you want me to call you first or do

> you prefer

> > that I act independent of you? Whatever your answer is

> OK with me.

> > I just want to do what is right and I don't want to

> hurt or upset

> > anyone in the process. I will also call [your brother]

> about this

> > issue [sic, he's visiting me].

> >

> > Regarding the items in the basement.....there is no

> will since she

> > agreed to leave her assets to Hollenbeck. But if there

> is anything

> > in storage that she would like to take out for the

> kids, she can do

> > it anytime. So she will ask someone in the property

> department to

> > help her with this task. In the meantime, she has

> asked for

> > and 's addresses so that she can write to them. I

> don't have

> > their addresses, so if you will allow me to have them,

> I will

> > forward them to her.

> >

> > I'm doing this for my father [mother's 1st cousin, who

> has had a

> > stroke]. He wants to know that she is OK, but since he

> can't

> > provide much support, he has asked me to do it.

>

> I know mother hasn't changed, so I still don't want

> contact with her,

> but I don't want to be vindictive. Knowing her, she'll

> probably live

> another 5 years at least, even though it sounds like

> there's a medical

> emergency in the making. It's hard not to feel guilty.

> I told cousin

> in my previous reply that it's the kids' place to provide

> their

> addresses, not me. Yet, cousin is still asking. Cousin

> is using her

> father as the excuse for getting involved with mother. I

> still don't

> have any obligation to do anything, and it makes me feel

> selfish. My

> mind can rationalize: no FOG. But my heart " feels "

> FOGgy. What I'm

> feeling and thinking are two different things. I read

> the email to my

> brother, and he made no comments. He's fed up too, and

> he apparently

> doesn't want to get involved either. So now I'm supposed

> to call my

> kids with this latest development? All this stuff is

> swimming around in

> my head. I'll sleep on it, and maybe in the morning I'll

> have more

> clarity.

>

> I'm just thinking out loud. Thanks for listening.

>

> SmileS!

> Carol

>

__________________________________________________

July 25, 2002

(((((((Carol)))))))

I hope you are holding up okay. I can only imagine

that these types of communication make your mother's

age and condition very *real*.

That aside, I agree with the other poster that said

the most important thing is to identify what you want

the outcome to be, and react accordingly. You state

that you don't want contact, so my response might be

something along these lines:

" Dear cousin,

Mother is very fortunate to have you taking care of

these things for her. Medical decisions and power of

attorney are of course very important and personal

choices that mother has put in your hands. It would

unreasonable to expect you to look for any feedback

from me in any of those decisions. I totally respect

the decisions mother has made, and trust the power she

has given you. It would be inappropriate of me to

voice any opinions or desires, as they are not my

decisions, they are mothers. Please know that I am

100% comfortable with the choices I have made over

past few years, and wish mother nothing but peace

whatever her heart desires. I know first hand the

value of my personal decisions respected, and

therefore of course could not do anything but return

that respect to mothers decisions.

Good luck to you both in the future. My thoughts will

be with you. "

If you have already addressed the items in storage and

the phone numbers of your adult children I would

ignore that part of the letter completely as it is a

boundary violation to badger for info.

--- Carol M wrote:

> Hi List Sisters!

>

> Brother arrived today, and he's been fine, so far.

>

> However, I got another email from the NH cousin

> today. The plot

> thickens. Rather than paraphrase, I'll copy & paste

> the pertinent

> parts:

>

> > Your mother has given me power of attorney for

> medical reason. I

> > really need to know how you feel about this. She

> has prepared

> > this document with the assistance of [retirement

> home] and it

> > is being mailed to me. It's all happening so fast

> and I need

> > to know how you will feel if I have to make health

> related

> > decisions. Would you want me to call you first or

> do you prefer

> > that I act independent of you? Whatever your

> answer is OK with me.

> > I just want to do what is right and I don't want

> to hurt or upset

> > anyone in the process. I will also call [your

> brother] about this

> > issue [sic, he's visiting me].

> >

> > Regarding the items in the basement.....there is

> no will since she

> > agreed to leave her assets to Hollenbeck. But if

> there is anything

> > in storage that she would like to take out for the

> kids, she can do

> > it anytime. So she will ask someone in the

> property department to

> > help her with this task. In the meantime, she has

> asked for

> > and 's addresses so that she can write to

> them. I don't have

> > their addresses, so if you will allow me to have

> them, I will

> > forward them to her.

> >

> > I'm doing this for my father [mother's 1st cousin,

> who has had a

> > stroke]. He wants to know that she is OK, but

> since he can't

> > provide much support, he has asked me to do it.

>

> I know mother hasn't changed, so I still don't want

> contact with her,

> but I don't want to be vindictive. Knowing her,

> she'll probably live

> another 5 years at least, even though it sounds like

> there's a medical

> emergency in the making. It's hard not to feel

> guilty. I told cousin

> in my previous reply that it's the kids' place to

> provide their

> addresses, not me. Yet, cousin is still asking.

> Cousin is using her

> father as the excuse for getting involved with

> mother. I still don't

> have any obligation to do anything, and it makes me

> feel selfish. My

> mind can rationalize: no FOG. But my heart " feels "

> FOGgy. What I'm

> feeling and thinking are two different things. I

> read the email to my

> brother, and he made no comments. He's fed up too,

> and he apparently

> doesn't want to get involved either. So now I'm

> supposed to call my

> kids with this latest development? All this stuff

> is swimming around in

> my head. I'll sleep on it, and maybe in the morning

> I'll have more

> clarity.

>

> I'm just thinking out loud. Thanks for listening.

>

> SmileS!

> Carol

>

__________________________________________________

July 25, 2002

Carol,

It does still sound like you've got a very good grasp of things. It

makes sense that you'd have foggy feelings, like the way your put that

by the way, as it's just what us KOs are conditioned to feel from

early on. I'm not sure we can change the station as much as turn the

volume down if that makes sense. I think you're doing a really good

job of turning the volume down.

As for your kids, they seem to know the extent of your nada's mental

illness. Whether you decide to tell them or not is only something you

could call- mother's intuition and as long as you know you're not

being a nada, trust that intuition.

It sounds a lot like your cousin has been 'hoovered' into this

situation and that sucks for her. I'm not really sure what you could

say to her other than you empathize as you've always been put in this

position too and that's why you're chosing not to be there right now.

Not sure why she feels the need to get so involved other than it's

like she said, her loyalties to her father. But that's not really

something that should pushed onto you. It's her choice to do this out

of obligation and if she's not doing it out of love, that's a problem

she has to face. Does she feel close to your nada as an aunt? Or is

it sincerely out of guilt with her dad and wanting to do something for

him? Surely she can understand that you've got obligations to take

care of yourself and so does your brother that are equally as

important in your life as her obligation to her father, right?

Hopefully she does see that.

I really feel for you guys as it's unbelievable how manipulative your

nada is seeming even with your cousin. It's kind of sad really and I'm

not talking about the reasons your nada feels sorry for herself. I'm

talking about being at such a late stage in life and still playing

such unbelievable games with those who love her. I see that with my

grandnada a lot. She always says she's 'not long for this world' and I

say, 'well when you decide to kick the bucket, I'll come to your

funeral, but otherwise, I can't say I care much to talk about your

upcoming death process while your still the specimen of good health.'

She always gives me this look of shock, and I just smile and get away

with it b/c I was always the 'all good grandchild' growing up. I do

push the edge a lot with her and will always do so when she's acting

like a total fruit cake. Oh well.

Best of luck while dealing with this. It really does sound like you

are doing a good job of keeping a handle on things and keeping it all

in perspective.

Kere

> Hi List Sisters!

>

> Brother arrived today, and he's been fine, so far.

>

> However, I got another email from the NH cousin today. The plot

> thickens. Rather than paraphrase, I'll copy & paste the pertinent

> parts:

>

> > Your mother has given me power of attorney for medical reason. I

> > really need to know how you feel about this. She has prepared

> > this document with the assistance of [retirement home] and it

> > is being mailed to me. It's all happening so fast and I need

> > to know how you will feel if I have to make health related

> > decisions. Would you want me to call you first or do you prefer

> > that I act independent of you? Whatever your answer is OK with

me.

> > I just want to do what is right and I don't want to hurt or upset

> > anyone in the process. I will also call [your brother] about this

> > issue [sic, he's visiting me].

> >

> > Regarding the items in the basement.....there is no will since she

> > agreed to leave her assets to Hollenbeck. But if there is

anything

> > in storage that she would like to take out for the kids, she can

do

> > it anytime. So she will ask someone in the property department to

> > help her with this task. In the meantime, she has asked for

> > and 's addresses so that she can write to them. I don't have

> > their addresses, so if you will allow me to have them, I will

> > forward them to her.

> >

> > I'm doing this for my father [mother's 1st cousin, who has had a

> > stroke]. He wants to know that she is OK, but since he can't

> > provide much support, he has asked me to do it.

>

> I know mother hasn't changed, so I still don't want contact with

her,

> but I don't want to be vindictive. Knowing her, she'll probably

live

> another 5 years at least, even though it sounds like there's a

medical

> emergency in the making. It's hard not to feel guilty. I told

cousin

> in my previous reply that it's the kids' place to provide their

> addresses, not me. Yet, cousin is still asking. Cousin is using

her

> father as the excuse for getting involved with mother. I still

don't

> have any obligation to do anything, and it makes me feel selfish.

My

> mind can rationalize: no FOG. But my heart " feels " FOGgy. What I'm

> feeling and thinking are two different things. I read the email to

my

> brother, and he made no comments. He's fed up too, and he

apparently

> doesn't want to get involved either. So now I'm supposed to call my

> kids with this latest development? All this stuff is swimming

around in

> my head. I'll sleep on it, and maybe in the morning I'll have more

> clarity.

>

> I'm just thinking out loud. Thanks for listening.

>

> SmileS!

> Carol

July 25, 2002

Thanks, everyone [, , Kere, , Hope] for all the

wonderful support and thoughtful replies. It really helps a lot!

Here's how things have gone so far.........

I sent the kids' email addresses to cousin and asked her to contact them

herself. Then I forwarded cousin's letter to both children, saying that

I'd given her their email addresses and to expect hearing from her. I

advised them to follow their hearts, and that I'd support them 100% with

whatever decisions they made. They know, understand and respect the

fact that I don't want to get involved.

Both children emailed cousin today, and my son has offered to do

whatever he can to help cousin, even signing the medical power of

attorney, if mother wishes.

Cousin emailed me and said, " It was great hearing from both kids today.

They're super kids! You are blessed. "

A load has been lifted off my shoulders, and cousin feels better too. I

worry the kids may get in over their heads, but they don't have the

baggage I have, so it'll be easier for them to set boundaries. They're

going to learn and grow from this, and they've got my full support.

This has taught me that I can't protect my children forever. They're

adults, and I needed to give them the reins. It isn't easy, but it's a

step that needed to be taken.

Funny thing......... the hardest part is actually taking the step.

Afterwards, it's a coast.

Thanks, and I'm still smiling...........

Carol

July 26, 2002

Carol

It sounds like you handled this wonderfully. I'm so impressed.

julie

Re: Re: Help!

Thanks, everyone [, , Kere, , Hope] for all the

wonderful support and thoughtful replies. It really helps a lot!

Here's how things have gone so far.........

I sent the kids' email addresses to cousin and asked her to contact them

herself. Then I forwarded cousin's letter to both children, saying that

I'd given her their email addresses and to expect hearing from her. I

advised them to follow their hearts, and that I'd support them 100% with

whatever decisions they made. They know, understand and respect the

fact that I don't want to get involved.

Both children emailed cousin today, and my son has offered to do

whatever he can to help cousin, even signing the medical power of

attorney, if mother wishes.

Cousin emailed me and said, " It was great hearing from both kids today.

They're super kids! You are blessed. "

A load has been lifted off my shoulders, and cousin feels better too. I

worry the kids may get in over their heads, but they don't have the

baggage I have, so it'll be easier for them to set boundaries. They're

going to learn and grow from this, and they've got my full support.

This has taught me that I can't protect my children forever. They're

adults, and I needed to give them the reins. It isn't easy, but it's a

step that needed to be taken.

Funny thing......... the hardest part is actually taking the step.

Afterwards, it's a coast.

Thanks, and I'm still smiling...........

Carol

July 26, 2002

In a message dated 7/25/02 2:48:45 AM Eastern Daylight Time,

camckay@... writes:

> . My

> mind can rationalize: no FOG. But my heart " feels " FOGgy.

Isn't that the worst? I am sending all of my anti-fog energy to you right

now. I'd just let it ride with the kids. They are aware of nada being in

the home, if they want her to have the addresses they'll give them to her!

I'd ignore that part of the letter from the cousin. Good luck to you.

Hugs,

Debbie

July 26, 2002

Swoooooosh! What a surge of anti-FOG energy! It's great, Debbie!

Thanks!

SmileS!

Carol

Debbie wrote:

> Isn't that the worst? I am sending all of my anti-fog energy to you right

> now. I'd just let it ride with the kids. They are aware of nada being in

> the home, if they want her to have the addresses they'll give them to her!

> I'd ignore that part of the letter from the cousin. Good luck to you.

Carol wrote:

> My mind can rationalize: no FOG. But my heart " feels " FOGgy.

July 27, 2002

In a message dated 7/27/02 12:00:43 AM Eastern Daylight Time,

camckay@... writes:

> Swoooooosh! What a surge of anti-FOG energy! It's great, Debbie!

> Thanks!

>

Anytime babydoll! Here is some patented " kiss my behind " energy to help you

get through the weekend...very useful in dealing with various civil servants,

grocery clerks and people who drive like loonies...as well as nefarious

cousins stuck in the fog, hee-hee.

hugs,

Debbie

July 27, 2002

Nefarious cousins stuck in the FOG. Yup! I love that one! And your

KMB (Kiss My Behind) energy pills will come in veeery handy. Thanks!

SmileS!

Carol

Debbie wrote:

> Anytime babydoll! Here is some patented " kiss my behind " energy to help you

> get through the weekend...very useful in dealing with various civil servants,

> grocery clerks and people who drive like loonies...as well as nefarious

> cousins stuck in the fog, hee-hee.

Carol wrote:

> > Swoooooosh! What a surge of anti-FOG energy! It's great, Debbie!

> > Thanks!

December 13, 2005

...maybe it is a reaction to one of your medicine's. Are you on

percocet or codeine? Some people just get different reactions to meds that

others

don't. I hope the doctor can figure it out. I have been itchy once but it was

with a rash. I have also had rashes that were not itchy. Feel better. Let us

know what happens?? Hugs Liz NJ

December 13, 2005

Hi Jules!

I am so happy to see your posts. I have experienced the itch you speak of

twice. Both times, it was caused by a medication. Both times, it was a

medication I had taken successfully for some time. Once, it was actually

Singulair, a medication used to prevent allergic reactions. Wierdest thing. I

figured it out because I would get insane itching right before bed every night

and it woulld keep me up all night long. I noticed the trend and noticed I

didn't itch before my evening meds and it was terrible itching about 20 minutes

later. So, one by one.... with the doctors okay, I stopped each med for a couple

of days to figure out the culprit. This " sudden drug " reaction after I've taken

something a while has happened to me many times so now I automatically try to be

aware of a drug issue.

Kineret makes me itch like that too but I need to take it so my doc gave me an

allergy medication. Feeling weak and strung out is frequently related to a drug

or a drug dose for me too. However, don't ignore the fact that it could be

stills. You live in your body, try really hard to find connections. What makes

it worse, better? When do you experience it worst? Is it better before or after

medication? Have you begun any new therapies? Your doctor can only diagnose for

the most part... based on what YOU tell him / her. That spurs their attention in

one direction or another to do this or that lab test. So, my dear ... you

have a bit of unraveling of clues ahead of you but maybe I've given you a place

to start and you can follow leads from there.

One of the best places to start the drug search is to go to my favorite drug

site. http://www.nlm.nih.gov/medlineplus/druginformation.html Look up and print

if you can, a copy of each medication you take and the side effects. Keep it

handy for future reference. See if any of them can cause itching. Check those

first if your doctor says to discontinue something for a day or two to see if

it's the cause.

I put up with Restless leg syndrome till I accidentally ran out of my current

NSAID once. It was the cause. I have carpal tunnel and tendonitis in my right

arm that can't be fixed with surgery without crippling my hand. I wore a splint

on my elbow and wrist for numbness for 8 months. Then, when trying to figure out

what drug was making me so fatigued so we could adjust the dose, I accidentally

discovered that my Glucose drug made my arm go numb. We switched and it went

away. I am currently on a " drug search " campaign of sorts to see if I can find

what's making me so extremely exhausted. No luck yet.

Be sure to tell your doctor all your symptoms. The doc can look up in her palm

pilot for drugs to find out what is causing it. Mine does. They also know what

tests to do to findo out if something serious is going on. I'm so happy to hear

from you and so sorry this is plagueing you.

Smiles, Caroline, the First

Empress of CUS

JC Rose wrote:

I was wondering if anyone else has experienced intense itching of their skin

but no redness or rash.

(Beautiful Southern Oregon, USA)

We may not be able to change the direction of the wind, but we can adjust our

sails.

May you have enough happiness to make you kind, enough trials to make you

strong, enough sorrow to keep you human, enough hope to make you happy.

---------------------------------

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping

December 13, 2005

Thanks Caroline! You mentioned an inhaler...funny thing, they just put me

on Advair (a steroid inhaler) for a bad case of bronchitis and newly

developed asthma (I still don't believe that one). I've been on the inhaler

(which is twice a day) for about a week and a half. The shaking chills are

just after taking the inhaler and I then seem to get better in the morning

after I take my prednisone....So, thanks, you may have something there. I

ll check with my doc about it.

Appreciate the help! Never thought of a drug reaction! Duh!

Always,

Jule :-)

-- Re: Help!

Hi Jules!

I am so happy to see your posts. I have experienced the itch you speak of

twice. Both times, it was caused by a medication. Both times, it was a

medication I had taken successfully for some time. Once, it was actually

Singulair, a medication used to prevent allergic reactions. Wierdest thing.

I figured it out because I would get insane itching right before bed every

night and it woulld keep me up all night long. I noticed the trend and

noticed I didn't itch before my evening meds and it was terrible itching

about 20 minutes later. So, one by one.... with the doctors okay, I stopped

each med for a couple of days to figure out the culprit. This " sudden drug "

reaction after I've taken something a while has happened to me many times so

now I automatically try to be aware of a drug issue.

Kineret makes me itch like that too but I need to take it so my doc gave

me an allergy medication. Feeling weak and strung out is frequently related

to a drug or a drug dose for me too. However, don't ignore the fact that it

could be stills. You live in your body, try really hard to find connections.

What makes it worse, better? When do you experience it worst? Is it better

before or after medication? Have you begun any new therapies? Your doctor

can only diagnose for the most part... based on what YOU tell him / her.

That spurs their attention in one direction or another to do this or that

lab test. So, my dear ... you have a bit of unraveling of clues ahead

of you but maybe I've given you a place to start and you can follow leads

from there.

One of the best places to start the drug search is to go to my favorite

drug site. http://www.nlm.nih.gov/medlineplus/druginformation.html Look up

and print if you can, a copy of each medication you take and the side

effects. Keep it handy for future reference. See if any of them can cause

itching. Check those first if your doctor says to discontinue something for

a day or two to see if it's the cause.

I put up with Restless leg syndrome till I accidentally ran out of my

current NSAID once. It was the cause. I have carpal tunnel and tendonitis in

my right arm that can't be fixed with surgery without crippling my hand. I

wore a splint on my elbow and wrist for numbness for 8 months. Then, when

trying to figure out what drug was making me so fatigued so we could adjust

the dose, I accidentally discovered that my Glucose drug made my arm go numb

We switched and it went away. I am currently on a " drug search " campaign of

sorts to see if I can find what's making me so extremely exhausted. No luck

yet.

Be sure to tell your doctor all your symptoms. The doc can look up in her

palm pilot for drugs to find out what is causing it. Mine does. They also

know what tests to do to findo out if something serious is going on. I'm so

happy to hear from you and so sorry this is plagueing you.

Smiles, Caroline, the First

Empress of CUS

JC Rose wrote:

I was wondering if anyone else has experienced intense itching of their skin

but no redness or rash.

(Beautiful Southern Oregon, USA)

We may not be able to change the direction of the wind, but we can adjust

our sails.

May you have enough happiness to make you kind, enough trials to make you

strong, enough sorrow to keep you human, enough hope to make you happy.

---------------------------------

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping

December 13, 2005

This happens to me from time to time, usually at night. It can become almost

unbearable at times, but I was prescribed Atarax. It not only takes the itch

away, but it can make me drowsy so I fall asleep and forget about how horrible

the itching is. Good luck and ask for this or get some benadryl. Take care!

Love Always,

________________________________

From: Stillsdisease on behalf of JC Rose

Sent: Tue 12/13/2005 4:44 AM

To: Stillsdisease

Subject: Help!

I was wondering if anyone else has experienced intense itching of their skin

but no redness or rash. This itching started about three days ago and is

driving me crazy. I've put on moisturizing lotions and everything else I

can think of to stop the itching. Nothing has worked. Along with this

itching has been a lot of pain and stiffness in my body. I've never felt

this before either, or at least not to this extent. I'm having to use my

cane because it's painful to move my legs. I feel all beat up. Does this

sound like a flare-up of Still's to anyone? I've also been having shaking

chills and muscle spasms. I don't know what the heck is going on, but need

to have some insight into what MIGHT be going on before I see my doc. She

doesn't specialize in any of my conditions, so that means I have to wait to

get into see someone else. In the meantime, anyone with any suggestions

that have worked for them, I'd sure be happy if you'd share them with me!

Looking for some similar symptoms in others so I don't feel like I'm the

only one going through this.

Rose in Minnesota

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

June 29, 2008

Pam have her epilepsy meds or any other meds been changed lately? She can be

having hormonal changes. Maybe her hormones and meds are not getting along.

Where are you from?

Pennie

Abby's Mom

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

June 29, 2008

Pam have her epilepsy meds or any other meds been changed lately? She can be

having hormonal changes. Maybe her hormones and meds are not getting along.

Where are you from?

Pennie

Abby's Mom

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

June 29, 2008

Wow! I can't believe a doctor in this day and age of therapy would

say something like that. My daughter had no language at two years old

and now talks up a storm. I usually have to tell her to stop. But,

for a doctor to try and tell you what a 2 year old will be like in 16

years is crazy. There are so many wonderful therapies out now that

will help your daughter so much. Since your daughter already has some

language that will help her, too.

One good thing that did come from your appointment is that you can

start therapies now. Early intervention is soo important. There are

so many more things out there for children with autism that weren't

around when my daughter was diagnosed 7 years ago. Good luck with

everything......Lori

>

> I just took my 2 year old daughter to Oregon Health and Sciences

> Hospital for a diagnosis and they told me that not only is she

> mildly autistic, but she is also mentally retarded with an IQ in the

> high 60's. The developmental pediatrician said that she may face a

> future living in group homes or at least she'll need special

> assistance with thinks like balancing her check book, etc.

>

> The doctor also said that IQ scores rarely climb from the 60's to

> normal range even in kids that young.

>

> She is 27 months old and expressively she has 20 words and

> receptively she has many more. She doesn't obey commands like " Come

> here " or " Sit down " . But isn't one morning of testing a two year

> old jumping the gun a bit on telling me that she'll likely never go

> to college? As the doctor was so kind to tell me.

>

> My 4 year old has AS so I know about autism, but this mentally

> retarded diagnosis has really thrown me for a loop. Has anyone

> else ever experienced anything similar to this?

> I'm freaking . . .

>

June 29, 2008

Hi. Nothing has been changed Med. wise. She's also been the same height and

weight for over a year. She is very small but tall if that makes any sense. She

has lost a lot of muscle tone too. She also only sleeps a couple of hours a

night. She doesn't eat enough by mouth to sustain her so she is also fed

overnight through her J-tube.

I am in Ithaca NY

Thanks

Pam

Re: HELP!

Pam have her epilepsy meds or any other meds been changed lately? She can be

having hormonal changes. Maybe her hormones and meds are not getting along.

Where are you from?

Pennie

Abby's Mom

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

June 29, 2008

Has she had any immunizations in the last few months? Just wondering

since you said her change came after them at two. I am ignorant with

Rett, but it seems I read about a regression associated with it with

one's body as you describe with the hands and motion issues. Does

anyone here who is knowledgeable with Rett have any info on that?

This is very off the wall, but I couldn't help but see some parallels

with her behaviors and the issues with ALD. Have you considered trying

the oil to see if it may help? I know sometimes fatty acid disorders

are associated.

Her age, have you had any newer genetic testing performed? I was told

my my SIL who is an ER doctor that genetics are growing so quickly

within 2-3 yrs completely new tests are springing up from discoveries.

Have you considered seeking new tests to see if any of the

metabolic/mito things may apply to your daughter?

HTH, just brainstorming.

Debi

June 29, 2008

I had a student with Rett's, it does fall under the Autism umbrella with many of

the same characteristics. It only occurs in girls and it is degenerative. Most

suffer medical problems from poor eating and need tube feedings later in life.

Many girls start out walking, talking then loose those skills over the years.

Here is a web page with some information:

http://en.wikipedia.org/wiki/Rhett_syndrome