Frustration

[Guest guest]

Sue,

I'm sorry to hear about the problems. You are right that consistency

is important. Maybe you could try again over Christmas break. Will

that give you two weeks? If he's with his dad over the holiday, that

won't help you, but if he's with you, after two weeks your son may

feel good enough to take the enzyme voluntarily. My friend's son is

eleven and has ADHD. He was not at all thrilled about taking the

enzymes, but after a month, he asked to continue them when his mom

gave him the choice. He said the enzymes made him feel " happier " .

> Hi everyone,

> I hate to say it, but this isn't going to work for my son's

> Asperger's Syndrome. He can't remember to take it consistently

> enough to even get through the first 3 weeks! I can't be there at

> the High School, or at his dad's to make sure that he takes it.

It's

> terribly frustrating, as we had very high hopes about this stuff.

We

> just can't stand to live with Mr. Hyde around here anymore and this

> definitely made him crabbier, spacier and more unmotivated. Geez!

> He's enough like that as a teenager! But after nearly 3 weeks and

no

> real iimprovement and his confession that he forgets to take it, it

> makes no sense to continue to do this to him, or us. There's just

no

> light at the end of this tunnel. So I guess it's back to medication

> roulette.

>

> However, maybe I'll try this for myself. Who knows, it might help

my

> chronic fatigue, or the multiple sensitivities, or maybe even the

> Fibromaylgia. Has anyone heard whether or not it helps with kidney

> stones? I'd be very interested to know this, as I've just gone

> through round two with the nasty things.

>

>

>

> Sue

[Guest guest]

In a message dated 9/26/01 4:06:46 PM Central Daylight Time,

kjorn@... writes:

> He could be going through withdrawal, especially if he was not GFCF

> before. That can be hard and take a couple weeks consistently. I

> would think he would soon start to feel a little better even if he

> doesn't take it consistently. My sons only HAVE to have Peptizyde if

> they have dairy. So if they need to remember to take the enzyme OR

> skip the dairy. Would your son be willing to do that? My older-absent-

> minded-professor-type son is very prone to forgetting everything (now

> 9 1/2). But now he knows how horrid he feels with no enzymes and

> really likes feeling better on them and so he always remembers. I am

> amazed how well he remembers. But he had to go through the forgetting

> and feeling horrible for a couple days a time or two before it set

> in. With an older child, they do need to cooperate with it a bit. If

> you need encouragement, give it a little more time...or maybe try

> again when he will be with you over a holiday or vacation so you can

> oversee it more.

>

> I take the enzymes regularly and it does help me with the chronic

> fatigue and sensitivities. I don't know about kidney stones though.

>

> .

>

>

>

>

He just got so bad around here that it seemed to be causing more harm than

good. Someone else had suggested we try it again over Christmas break.

Unfortunately, he spends part of that at his dad's. We had been approaching

the 3 week mark, too, with no discernible improvement. He was just spacing

out over his homework and getting crabbier and more difficult to be around.

It's possible that we were using the wrong enzymes, too. His doctor gave us

a prescription for enzymes that he said some of his patients used. Perhaps

we need to try the brand that most of you are talking about after all. I

just thought that it would be nice to have the insurance pick up the tab.

But then, there I go thinking again!

Also, it's very heartening to hear that this is working for your fatigue and

sensitivities. I'd sure love to be free of that!

Thanks for the support from everyone!

Sue

[Guest guest]

In a message dated 9/26/01 1:53:20 PM Central Daylight Time,

ckelley100@... writes:

> Sue,

>

> I'm sorry to hear about the problems. You are right that consistency

> is important. Maybe you could try again over Christmas break. Will

> that give you two weeks? If he's with his dad over the holiday, that

> won't help you, but if he's with you, after two weeks your son may

> feel good enough to take the enzyme voluntarily. My friend's son is

> eleven and has ADHD. He was not at all thrilled about taking the

> enzymes, but after a month, he asked to continue them when his mom

> gave him the choice. He said the enzymes made him feel " happier " .

>

>

>

>

>

He does usually spend part of that with his dad. Last year we were out of

town, but I don't think that his dad would appreciate that 2 years in a row.

I'm going to have to think about this some more.

Sue

[Guest guest]

He could be going through withdrawal, especially if he was not GFCF

before. That can be hard and take a couple weeks consistently. I

would think he would soon start to feel a little better even if he

doesn't take it consistently. My sons only HAVE to have Peptizyde if

they have dairy. So if they need to remember to take the enzyme OR

skip the dairy. Would your son be willing to do that? My older-absent-

minded-professor-type son is very prone to forgetting everything (now

9 1/2). But now he knows how horrid he feels with no enzymes and

really likes feeling better on them and so he always remembers. I am

amazed how well he remembers. But he had to go through the forgetting

and feeling horrible for a couple days a time or two before it set

in. With an older child, they do need to cooperate with it a bit. If

you need encouragement, give it a little more time...or maybe try

again when he will be with you over a holiday or vacation so you can

oversee it more.

I take the enzymes regularly and it does help me with the chronic

fatigue and sensitivities. I don't know about kidney stones though.

.

[Guest guest]

Sue,

I did make a wrong assumption on the kind of enzymes your son was

taking. My friend's son takes Peptizyde and HN-Zyme Prime.

> In a message dated 9/26/01 4:06:46 PM Central Daylight Time,

> kjorn@t... writes:

>

>

> > He could be going through withdrawal, especially if he was not

GFCF

> > before. That can be hard and take a couple weeks consistently. I

> > would think he would soon start to feel a little better even if

he

> > doesn't take it consistently. My sons only HAVE to have Peptizyde

if

> > they have dairy. So if they need to remember to take the enzyme

OR

> > skip the dairy. Would your son be willing to do that? My older-

absent-

> > minded-professor-type son is very prone to forgetting everything

(now

> > 9 1/2). But now he knows how horrid he feels with no enzymes and

> > really likes feeling better on them and so he always remembers. I

am

> > amazed how well he remembers. But he had to go through the

forgetting

> > and feeling horrible for a couple days a time or two before it

set

> > in. With an older child, they do need to cooperate with it a bit.

If

> > you need encouragement, give it a little more time...or maybe try

> > again when he will be with you over a holiday or vacation so you

can

> > oversee it more.

> >

> > I take the enzymes regularly and it does help me with the chronic

> > fatigue and sensitivities. I don't know about kidney stones

though.

> >

> > .

> >

> >

> >

> >

>

> He just got so bad around here that it seemed to be causing more

harm than

> good. Someone else had suggested we try it again over Christmas

break.

> Unfortunately, he spends part of that at his dad's. We had been

approaching

> the 3 week mark, too, with no discernible improvement. He was just

spacing

> out over his homework and getting crabbier and more difficult to be

around.

>

> It's possible that we were using the wrong enzymes, too. His

doctor gave us

> a prescription for enzymes that he said some of his patients used.

Perhaps

> we need to try the brand that most of you are talking about after

all. I

> just thought that it would be nice to have the insurance pick up

the tab.

> But then, there I go thinking again!

>

> Also, it's very heartening to hear that this is working for your

fatigue and

> sensitivities. I'd sure love to be free of that!

>

> Thanks for the support from everyone!

> Sue

>

>

>

[Guest guest]

- you sound so stressed and frustrated! First of all - try to relax.

The stress will only make you hurt more. Are you sure you can't remain on a

small dose (5 mg. maybe) of prednisone? If your doc. cut you off too

quickly, you are going to be in pain and miserable. Generally, 2.5 to 5 mgs.

a day shouldn't be too overpowering on the side effects, but then of course,

I'm not an M.D.

I think that getting to see a rheumy is the most important step for you right

now. This disease is far too complicated for a prim. to handle (no offense

to any primaries out there!) and you need a specialist. What works for some

of us with PA doesn't work for others and vice versa. You might want to ask

the rheumy about DMARDS like methotrexate - they are heavy duty drugs with

some nasty side effects, but steriods, NSAIDS, and pain killers are NOT going

to protect your joints from deteriorating. Again, not that I'm an MD, but I

do think hitting PA full force and being aggressive in treatment is a good

plan. Talk about enbrel too - if you rheumy is comfortable saying you have

" inflammatory arthritis " rather than PA, you may get approved. It takes a

while and you have to do some paperwork - but it's been a great drug for many

PA'ers.

Good luck - try to relax - you can always vent here if need be

Take care,

[Guest guest]

Hi ,

About Enbrel, they say that you have to try two other

meds before taking Enbrel. I was lucky in only trying

one med before going on Enbrel. I've only taken two

shots and have had excellent success.

Sorry to hear you are not doing well. Try to keep

your chin up, there is hope out there, it just takes a

while for it to happen.

-scott

--- Boyd <celtichealing@...> wrote:

> Hello,

Well my prim doc weaned me off

> of predinisone because I

> was hell on wheels and couldn't take being so mean

> all the time, he put me

> on celebrex (useless for me) and vicadin combo. He

> says he can't do

> anything more because that's not his specialty and

> he wants to treat the

> problem, not just cover it with drugs. I called the

> rheumy he suggested,

> they wouldn't take me until May 2002!!!!! Argh... so

> I called doc back and

> he got me in Dec 13th so we'll see what happens.

> I'm still on the Vic's for

>

> what's next? I want to try Enbrel but I don't know

> if I qualify etc. Can

> anyone help me? I'd appreciate it. I'm glad I'm

> back to reading the posts

> and I missed you guys =)) I hope everyone is doing

> well.

> Thanks

> Brightest Blessings,

>

> Dayton, Ohio

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

>

>

>

__________________________________________________

[Guest guest]

<< I've been lurking alot, and when I finally got to my emails, there

were 498! So I decided to clear them all and just start checking them

daily. Hope I didn't miss much =) >>

You didn't lose those 498 messages. They're still on the webpage if

you ever want to go back and see what you missed.

This has been mentioned before but not recently... Members DO NOT

have to have the emails sent to their computer. Just click on " Edit

my membership " in the top right hand side of this page. Then, in the

first set of questions, change your choice to " recieve no emails, I

will read the messages on the webpage " (or words to that effect).

Save the message page as a favorite or shortcut on your browser and

you'll never be burdened with mass emailing again. When you revisit

the message page using the shortcut it should automatically take you

to the latest posts. Use the back arrow button to go back and read

all 15,000+ if you want

[Guest guest]

Thanks, I'm aware of that but choose to have them delivered as they are now.

I was just away for awhile is all. I wish I had the time and energy to go

back and read all of them =( It'll get better though!

Brightest Blessings,

Dayton, Ohio

>From: " Walden " <shawbranch@...>

>Reply-

>

>Subject: [ ] Re: Frustration

>Date: Thu, 15 Nov 2001 21:46:08 -0000

>

>

><< I've been lurking alot, and when I finally got to my emails, there

>were 498! So I decided to clear them all and just start checking them

>daily. Hope I didn't miss much =) >>

>

>You didn't lose those 498 messages. They're still on the webpage if

>you ever want to go back and see what you missed.

>

>This has been mentioned before but not recently... Members DO NOT

>have to have the emails sent to their computer. Just click on " Edit

>my membership " in the top right hand side of this page. Then, in the

>first set of questions, change your choice to " recieve no emails, I

>will read the messages on the webpage " (or words to that effect).

>

>Save the message page as a favorite or shortcut on your browser and

>you'll never be burdened with mass emailing again. When you revisit

>the message page using the shortcut it should automatically take you

>to the latest posts. Use the back arrow button to go back and read

>all 15,000+ if you want

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

I am frustrated. But I'll be ok shortly, it only last a short while lol.

About the Predinasone, the answer would be no. I am a real witch on that

stuff, even at 2 1/1 mg. I can't take the DMARDS due to the fact I want one

more child in a couple of years. I've tried Predinasone, Indocen, vicadin,

celebrex (I think that's it) I'm really overprotective in what I put into my

body, and I have to make sure it doesn't affect my birth control (depo

provera shot) I've gained a ton of weight, I'm a big ole porker right now.

Prim started me on Meridia's lowest dose, I still eat. I go to see the

Rheumy on Dec 13th thanks to my prim... he threw a screamin fit to get me in

earlier. That's one thing my Prim and I agree upon. He wants to fix the

problem per se or make it better at least, not keep me drugged up to cover

it. He says there are so many other options out there for me, but he's not

up on them nor is it his specialty so he wants someone good for me. tI feel

lucky to have a prim like him. So to get Enbrel doc has to say it's

inflamatory arthritis and not PA? Is that because the FDA hasn't approved

it for that purpose yet? I need to do some research before that Rheumy

visit. Thanks for listening to me, I appreciate it. It makes me feel

better to know I can at least vent to people who care and have and or are

there and know exactly what I'm talking about. I feel like this list is

like family =)

Happy Thanksgiving all!

Brightest Blessings,

Dayton, Ohio

>From: TADEL630@...

>Reply-

>

>Subject: Re: [ ] Frustration

>Date: Thu, 15 Nov 2001 14:20:42 EST

>

> - you sound so stressed and frustrated! First of all - try to

>relax.

> The stress will only make you hurt more. Are you sure you can't remain

>on a

>small dose (5 mg. maybe) of prednisone? If your doc. cut you off too

>quickly, you are going to be in pain and miserable. Generally, 2.5 to 5

>mgs.

>a day shouldn't be too overpowering on the side effects, but then of

>course,

>I'm not an M.D.

>I think that getting to see a rheumy is the most important step for you

>right

>now. This disease is far too complicated for a prim. to handle (no offense

>to any primaries out there!) and you need a specialist. What works for

>some

>of us with PA doesn't work for others and vice versa. You might want to

>ask

>the rheumy about DMARDS like methotrexate - they are heavy duty drugs with

>some nasty side effects, but steriods, NSAIDS, and pain killers are NOT

>going

>to protect your joints from deteriorating. Again, not that I'm an MD, but

>I

>do think hitting PA full force and being aggressive in treatment is a good

>plan. Talk about enbrel too - if you rheumy is comfortable saying you have

> " inflammatory arthritis " rather than PA, you may get approved. It takes a

>while and you have to do some paperwork - but it's been a great drug for

>many

>PA'ers.

>Good luck - try to relax - you can always vent here if need be

>Take care,

>

>

>

>

[Guest guest]

Thanks, I'm gonna do some research this evening and see if anything helps.

I took 3 or 4 alleve about an hour ago and they've kicked in somewhat. I

can play with the baby at least. That's the worst of it, is not being able

to care for the baby, at least my mom lives with us and helps a ton! I have

fibromyalgia, psoriatic arthritis and psoriasis (which is getting horrid now

that it's getting colder) and I try to function like a normal person does...

sometimes it gets hard and I just have to remember I have support here...

Thanks!

Brightest Blessings,

Dayton, Ohio

>From: <shadwen_2000@...>

>Reply-

>

>Subject: Re: [ ] Frustration

>Date: Thu, 15 Nov 2001 09:56:21 -0800 (PST)

>

>Hi ,

>

>About Enbrel, they say that you have to try two other

>meds before taking Enbrel. I was lucky in only trying

>one med before going on Enbrel. I've only taken two

>shots and have had excellent success.

>

>Sorry to hear you are not doing well. Try to keep

>your chin up, there is hope out there, it just takes a

>while for it to happen.

>

>-scott

>--- Boyd <celtichealing@...> wrote:

> > Hello,

>Well my prim doc weaned me off

> > of predinisone because I

> > was hell on wheels and couldn't take being so mean

> > all the time, he put me

> > on celebrex (useless for me) and vicadin combo. He

> > says he can't do

> > anything more because that's not his specialty and

> > he wants to treat the

> > problem, not just cover it with drugs. I called the

> > rheumy he suggested,

> > they wouldn't take me until May 2002!!!!! Argh... so

> > I called doc back and

> > he got me in Dec 13th so we'll see what happens.

> > I'm still on the Vic's for

> >

> > what's next? I want to try Enbrel but I don't know

> > if I qualify etc. Can

> > anyone help me? I'd appreciate it. I'm glad I'm

> > back to reading the posts

> > and I missed you guys =)) I hope everyone is doing

> > well.

> > Thanks

> > Brightest Blessings,

> >

> > Dayton, Ohio

> >

> >

> >

>_________________________________________________________________

> > Get your FREE download of MSN Explorer at

> > http://explorer.msn.com/intl.asp

> >

> >

> >

>

>

>__________________________________________________

>

[Guest guest]

---For two years after the birth of my last child, I was 35 pounds

overweight, Im only 5ft3in so it REALLY showed, depressed, and

frustrated because for 10 years I was in pain and kept beig told " its

stress, lose weight and see a psychiatrist " Well, one year ago

almost exactly, I finally went to the rheumy and got diagnosed with

PA. Finally havig someone pinpoint it helped my spirits, and over

the course of the year having someoe believe that I really was sick,

I have lost a lot of weight, went from 165 to 128, and just feel

better knowing that I am not imagining this and its real. I really

hope that once you get things settled, then you can work on your

inner self and see that if you are happy and content and feel loved,

the weight and other outer problems just seem to melt away. My

point, is make your self someone you can love and don't worry about

anything else first. I really hope this helps or at least lifts your

sprirts,

[Guest guest]

In a message dated 11/18/2001 5:46:57 PM Eastern Standard Time,

celtichealing@... writes:

> So to get Enbrel doc has to say it's

> inflamatory arthritis and not PA? Is that because the FDA hasn't approved

> it for that purpose yet? I need to do some research before that Rheumy

> visit.

yes - and most rheumys will agree to say " inflamatory A " rather than PA - but

please, please, please - SEE A RHEUMATOLOGIST!! It amazes me how many people

on here fool around with primaries for so long. PA is too complicated and

too specialized for a GP. It's even different for every one of us so how on

earth would a primary know how to treat it?? You need to see someone who has

experience in treating PA.

My 2 cents -

[Guest guest]

Hi , I also am having a really hard time and seem to be very much like

yourself. I have fibriomilgia Psoriatic arthritis and psorisis. I have a five

month old son named and it kills me when I crawl home from work and

can't pick him up! I want to have another baby so they took me off of

everything last week and now I can't move. My rummy gave me two injections in

the joints that hurt like hell and they didn't do a thing. I feel for you

because I know. Best of luck , Michele

[Guest guest]

I've said this before:

Found out Rheumy will write RA just so can Enbrel.

Latest diagnosis to get Enbrel was poly arthritis sero negative with

psoriasis. guess PA can stand for polyarthritis also? lol

> In a message dated 11/18/2001 5:46:57 PM Eastern Standard Time,

> celtichealing@h... writes:

>

>

> > So to get Enbrel doc has to say it's

> > inflamatory arthritis and not PA? Is that because the FDA hasn't

approved

> > it for that purpose yet? I need to do some research before that

Rheumy

> > visit.

>

> yes - and most rheumys will agree to say " inflamatory A " rather

than PA - but

> please, please, please - SEE A RHEUMATOLOGIST!! It amazes me how

many people

> on here fool around with primaries for so long. PA is too

complicated and

> too specialized for a GP. It's even different for every one of us

so how on

> earth would a primary know how to treat it?? You need to see

someone who has

> experience in treating PA.

> My 2 cents -

>

>

>

>

[Guest guest]

Thank you TRACY!!

I totally agree with you on the fact that the GP doesn't know what he

is doing with PA. My GP had me so lost that I thought I was losing my

mind. There are 4 doc in his practice and all of them thought that I

was just a hypochondric. Here 90% of my body was covered in p and

they are tellig me that there is nothing wrong with me. I was even

starting to believe it. I went to the psychiatrist thinking that it

was all in my head!! I finally got my GP to let me see a Rhmuee and

life has been much, much better. At least I found out that I am sane

and not losing my mind!! Please anyone who has not seen a Rhumee yet

do it NOW!!

> > In a message dated 11/18/2001 5:46:57 PM Eastern Standard Time,

> > celtichealing@h... writes:

> >

> >

> > > So to get Enbrel doc has to say it's

> > > inflamatory arthritis and not PA? Is that because the FDA

hasn't

> approved

> > > it for that purpose yet? I need to do some research before

that

> Rheumy

> > > visit.

> >

> > yes - and most rheumys will agree to say " inflamatory A " rather

> than PA - but

> > please, please, please - SEE A RHEUMATOLOGIST!! It amazes me how

> many people

> > on here fool around with primaries for so long. PA is too

> complicated and

> > too specialized for a GP. It's even different for every one of

us

> so how on

> > earth would a primary know how to treat it?? You need to see

> someone who has

> > experience in treating PA.

> > My 2 cents -

> >

> >

> >

> >

[Guest guest]

Hello,

I was just wondering if anyone felt like writing a little about the problems that a lot of us have sleeping. I am frustrated with trying to make someone understand who just cant seem to see why I cant have regular sleeping hours like they do. so I thought maybe if they just happen to read it from someone else they might get it through their head.

Greg

TX

[Guest guest]

In a message dated 12/11/01 5:08:49 PM Pacific Standard Time, kgreg777@... writes:

I was just wondering if anyone felt like writing a little about the problems that a lot of us have sleeping. I am frustrated with trying to make someone understand who just cant seem to see why I cant have regular sleeping hours like they do. so I thought maybe if they just happen to read it from someone else they might get it through their head.

Greg

Greg, do you have the Palmer book on liver disease? If so, look on page 279 for a discussion of sleep disorders and their cause and treatment. Some points from the book: Sleep disturbances are common in people with liver disease; approximatey 35 to 50% of people with cirrhosis have problems. Many people complain of being tired all day and awake all night. Some people alternate days with lack of sleep with days of excessive sleep. The sleep problems are most likely related to changes in the body's production of melatonin. Prednisone and other drugs prescribed for liver disease cause sleeplessness, often to an extreme degree. And then there's itching.

When I was taking 80 mg of Prednisone, many nights I wanted terribly, terribly, to clean out the garage at 3 a.m. When daytime came, I wanted only to sleep. I couldn't understand my suddenly irregular sleep patterns (my doctor hadn't mentioned the possibility), so I'm not surprised that your friend can't fully sympathize.

Many people in the group comment on serious problems with sleep. It isn't your imagination, it isn't being self indulgent. Your body is doing it. The book mentions some treatments and drugs that may help some people. Talk to your doctor.

[Guest guest]

Dear ...I am really sorry for you and wish there was a magic way to take away these problems! I also understand the problem of wanting to continue to work! AFter listening to so many of the stories out here...I am blessed to be able to continue working. It will be a sad day when I cannot work!

It is OK to vent ....better to vent here than to take it out on yourself! That is what happens to me when I don't allow myself to vent! My frustration comes out "sideways" as my husband says! So, feel free to vent.

Is there no way to take less pills? Or to be able to find a combination that will take less pills? Golly, I hope the doctors can find some way to help without going the transplant way!

Blessings to you ...debby

[ ] FRUSTRATION

Hey guys,I just have to vent. I have been feeling so well after my hospital stay. Still having some difficulty swallowing and had lunch hang up today, but back at work and had a lot of energy considering HGB drop from 12.4 to 9.2. Received a phone call from the PA at my Hepatologist office. (I see Gastroenterologist here at home who monitors things for Hepatologist who is 1 1/2 hours away.) She was upset because she could not get through to my local MD and was just checking in on how I was doing. After reporting lab's and info she stated she was going to relay message to my Hepatologist but she felt that she was not sure if he would want me seen in the Hepatology Clinic or the Transplant Clinic. She thinks I'm maintaining but am borderline RE: the Transplant Clinic.Guys I don't want to feel sorry for myself because I am very lucky to have avoided it as long as I have, but I am really BUMMED about this news. They are going to add more medicines to lower BP even more. I'm trying to work, (Single Mom) and if they drop my BP any lower I will be dragging. Hepatologist was happy with what was done by local MD RE: treatment for the bleed but wants to add more meds. As a lot of us do, I take a handful of pills now I don''t know how they can still add to the list and expect things to not go WACKY.Enough of my pity party, just had to vent. Thanks for listening.Frustrated in Virginia

[Guest guest]

,

This is the place to vent. We have been there and cannot only tolerate your

venting but can give you some constructive support. Use us as much as you

want, what you are going through sucks (sorry if I offended anyone)but you

will be OK. I do believe that! mom it will be important to recruit some

sympathetic support people. Keep in touch.

Patty

[ ] FRUSTRATION

Hey guys,

I just have to vent. I have been feeling so well after my hospital stay.

Still having some difficulty swallowing and had lunch hang up today, but

back

at work and had a lot of energy considering HGB drop from 12.4 to 9.2.

Received a phone call from the PA at my Hepatologist office. (I see

Gastroenterologist here at home who monitors things for Hepatologist who is

1

1/2 hours away.) She was upset because she could not get through to my

local

MD and was just checking in on how I was doing. After reporting lab's and

info she stated she was going to relay message to my Hepatologist but she

felt that she was not sure if he would want me seen in the Hepatology Clinic

or the Transplant Clinic. She thinks I'm maintaining but am borderline RE:

the Transplant Clinic.

Guys I don't want to feel sorry for myself because I am very lucky to have

avoided it as long as I have, but I am really BUMMED about this news. They

are going to add more medicines to lower BP even more. I'm trying to work,

(Single Mom) and if they drop my BP any lower I will be dragging.

Hepatologist was happy with what was done by local MD RE: treatment for the

bleed but wants to add more meds. As a lot of us do, I take a handful of

pills now I don''t know how they can still add to the list and expect things

to not go WACKY.

Enough of my pity party, just had to vent.

Thanks for listening.

Frustrated in Virginia

[Guest guest]

Harper 80 mg prednisone! ouch! I don't think I was ever above 60! Your garage must be immaculate!

Patty

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Tuesday, December 11, 2001 9:22 PM Subject: Re: [ ] FRUSTRATIONIn a message dated 12/11/01 5:08:49 PM Pacific Standard Time, kgreg777@... writes:

I was just wondering if anyone felt like writing a little about the problems that a lot of us have sleeping. I am frustrated with trying to make someone understand who just cant seem to see why I cant have regular sleeping hours like they do. so I thought maybe if they just happen to read it from someone else they might get it through their head. Greg Greg, do you have the Palmer book on liver disease? If so, look on page 279 for a discussion of sleep disorders and their cause and treatment. Some points from the book: Sleep disturbances are common in people with liver disease; approximatey 35 to 50% of people with cirrhosis have problems. Many people complain of being tired all day and awake all night. Some people alternate days with lack of sleep with days of excessive sleep. The sleep problems are most likely related to changes in the body's production of melatonin. Prednisone and other drugs prescribed for liver disease cause sleeplessness, often to an extreme degree. And then there's itching. When I was taking 80 mg of Prednisone, many nights I wanted terribly, terribly, to clean out the garage at 3 a.m. When daytime came, I wanted only to sleep. I couldn't understand my suddenly irregular sleep patterns (my doctor hadn't mentioned the possibility), so I'm not surprised that your friend can't fully sympathize. Many people in the group comment on serious problems with sleep. It isn't your imagination, it isn't being self indulgent. Your body is doing it. The book mentions some treatments and drugs that may help some people. Talk to your doctor.

[Guest guest]

,

So sorry to hear you're having a rough time. It must be really tough being a single mom. I sure hope they get everything straightened out for you. Your in my thoughts and prayers.

Bethanne

[Guest guest]

Just had to write and tell everyone that no matter how great their

accomplishments are I still get slapped in the face once in awhile to tell me

that my child has a long way to go.Yesterday I was in the bathroom getting

dressed and my son was in his room watching cartoons.I heard what

sounded like water hitting the carpet.I walked in and there he was standing

in the corner with a " dazed look like he was in another world look " . I called

him and after a few minutes he looked up. I smelled the smell of urine and I

asked him why he did that . He didn't know.I got angry and punished him. I know

that this is part of his apraxia and he does go in his own little world

sometimes but it still made me angry. He said that he couldn't hold it but he

wasn't that far from the bathroom.Does anyone else's child have this problem?If

he was asleep I could understand but he was perfactly awake.I probably shouldn't

have reacted that way but I did. Any suggestions?

Gretchen from Missouri

[Guest guest]

We have the same problems with my son who is 12 today, he also has renal

problems and I have always put it down to that, but must admit it gets very

frustrating at times........

Jane and Arthur

Mum and Dad to Mathew aged 11

Diagnosed with Verbal Dyspraxia,

Severe receptive language delay

grammatical delay.

Delayed expressive language.......

Also born with Renal problems

Adelaide, South Australia

[Guest guest]

Gretchen,

I'm sorry, I don't have any great suggestions,only empathy.

Our can be really destructive (she'll be six in a few days). It isn't

as though she's in a rage or always deliberately sets out to break things.

It's more like she simply " wasn't thinking " and the next thing she knew, it

was broken. Sometimes, she does do it intentionally. She may even break

something that she loves, only to realize it after the fact. She may break

something that I love, just because she didn't get another piece of candy.

I too, will correct my child and even scold her -- a short time-out may

result. For my girl, I generally think it's the best approach (though I'm

always open to trying new things). There are a different reasons why she

might break something however, I don't want her to get the idea that any of

them are acceptable. I try to give her other, more appropriate ways of

expressing herself. It's up to her to use them and she is -- slowly but

surely. The rest of them time, we just do our best.

Best,

Dana

rodgers@...

[ ] Re: Frustration

> Just had to write and tell everyone that no matter how great their

> accomplishments are I still get slapped in the face once in awhile to tell

me

> that my child has a long way to go.Yesterday I was in the bathroom getting

> dressed and my son was in his room watching cartoons.I heard what

> sounded like water hitting the carpet.I walked in and there he was

standing

> in the corner with a " dazed look like he was in another world look " . I

called

> him and after a few minutes he looked up. I smelled the smell of urine and

I

> asked him why he did that . He didn't know.I got angry and punished him. I

know that this is part of his apraxia and he does go in his own little world

sometimes but it still made me angry. He said that he couldn't hold it but

he wasn't that far from the bathroom.Does anyone else's child have this

problem?If he was asleep I could understand but he was perfactly awake.I

probably shouldn't have reacted that way but I did. Any suggestions?

> Gretchen from Missouri

>

>

>