Gayle

[Guest guest]

,

Ginger has any and all info for that stuff and I am sure she will continue to

post the info as long as any of you need it to be. As for your pain I get it

as well mine is Rheumatoid arthritis and not sure what else but maybe look in

that direction for your pain. I am just beginning to explore this area for

myself only cried to the docs about my pain for 4 years. I feel like a gypsy

on a quest. My body is going to hell in a handbasket.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

gayle - how true I feel the same way when they gave some of these doctors

their

degrees iI think they were idiot licenses. I won't go to my Gastro because I

am seeing a hepotologist for the first time Nov. 19th and I am going to ask

him all about

this stuff. My primary care doctor is a joke, everytime you go it's are you

undera lot

of stress is something bothering you. One of these days I am going to tell

him yes

you are you idiot. I just read Bactrim on that list, he had me on that for 5

days twice a day, and they are the doctors, boy am i going to shove that in

his face. Now maybe I know why my liver area has been hurting so much

lately. Sorry gayle, for

venting they just really tick me off. Hug's,

[Guest guest]

Gayle, I think you're right about the awareness factor. I had no clue there

was a disease like AIH. The doctors told us it is rare but after seeing all

the people in this group and who knows how many others it doesn't seem that

rare to me. I guess if you compare it to cancer it's more rare but to the

people it affects it's just as important.

My

mother goes for her labs tomorrow and then will make an appointment to talk

to the doctor. He wants to talk to her about removing her spleen. Thank you

very much for asking.

How are you feeling today? I

can't explain it but Jodi is feeling better than she has in weeks, or so she

tells me. Her LFT are worse but she feels better. I will just thank God and

leave it at that. Yes, our Jodi's are pains but we love them. It's getting

late, you take care and I will talk to you soon. Genny/Jodi's Mom

[Guest guest]

Genny,

It's not that AIH is rare or even something like Fibromyalgia. It's so new

to the medical field. As discovering how important the liver really is no one

looked before.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

No gayle, he has not talked to his dr about depression or anything else. I

told his nurse and seemed sounded concerned but that was the end of that.. I

suggeted that maybe they should see him since they have not since May but

they didn't feel like they needed to. Even though i have been told that his

dr is the best at duke, i am still considering a change. To get a second

opinion, can you get hold of your records to take with you or do you just

have to start all over again?

So are you saying that this is not ususual for it to take this long to fing

what is the right kind of meds for him?

Thanks for caring so much,

Rosemary

[Guest guest]

Rosemary,

You are in for the long haul. Takes so much time and maintenance and work at

getting on top of it. After a while it will become more routine but getting

there is rough. I would talk to the doctors as much as you need to. They need

to hear all of his fears and questions and worries. Seems his labs would have

them pay more attention as well. You can request any of the records and keep

them with you. I make University send me a full lab report of every labs

done. Then I can keep track myself. I don't like surprises. And depression is

a very real part of the disease, that needs to be treated. What he feels and

the frustration is all part of it.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

gayle, i really appreciate you letting me know how it is and is gonna be. I

sent your message on to Hunt and i think it made us both feel better to know

that this is normal.

thanks again.

Rosemary

[Guest guest]

Hi Gayle, I hope he can help you with your pain. Genny

[Guest guest]

Rosemary,

Another question I have. Is your son trying to carry too much of a load?

While the docs adjust his meds. School could be hard. Then I am sure he

trying to keep up with the peers. Lot of work being his age. He may find I

think I have heard along the way is when you slow the body down his levels

could go down. I hope anything I can send you can at least give you the

reality. Sucks but trying to make it sound better than it can be is a let

down. I know the docs tried that on me just before transplant all it did was

piss me off. Reality helps you to cope.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Hi Joan,

Thanks for asking. I just have not felt well. I am so depressed about all the

problems and I just can't seem to get this into a perspective I can deal

with. Some days I don't know which way to turn or what pain feels worse. My

new diagnosis means many more doctors to visit. Maybe a new lead to

understand by the other clinics how to treat me properly I hope. I have a

hard time with sleep. I am so tired all of the time and not that should

matter. I hate dragging through the day. I just can't get with it for

anything. I am worried about not being able to work, the future is looking

dim in that respect especially since being a camera operator is so physical.

Fibromyalgia affects the mind and concentration so have way to many

limitations. This is definitely a day at a time illness.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Gayle,

You do sound down in the dumps. I wish I had some words of wisdom for

you. Only thing I can say is don't keep it inside. It's so easy to get

sucked into a deep depression and we're here to keep to talking. Life

looks so grey when we're tired. I have often said I could get through

any kind of a day as long a I have a good nights sleep. You 100% right

about taking a day at a time, but keep the faith it will get better.

Call me silly, but have you ever tried any aromatherapy? Now every

store sells it. Rite Aid and other phar. stores. Find one that says

calming & aids with sleep. If you think positive and use before bed and

keep on your pulse points, it may help to get a sound bit of sleep. I

swear it has aided my healing.. If it doesn't work and you want a good

laugh I can give you other suggestions about other kooky remedies.

Be Well my friend. And please try not to get so down you shut us out.

Joan Claffey

NJ

galye@... wrote:

>

> Hi Joan,

> Thanks for asking. I just have not felt well. I am so depressed about all the

> problems and I just can't seem to get this into a perspective I can deal

> with. Some days I don't know which way to turn or what pain feels worse. My

> new diagnosis means many more doctors to visit. Maybe a new lead to

> understand by the other clinics how to treat me properly I hope. I have a

> hard time with sleep. I am so tired all of the time and not that should

> matter. I hate dragging through the day. I just can't get with it for

> anything. I am worried about not being able to work, the future is looking

> dim in that respect especially since being a camera operator is so physical.

> Fibromyalgia affects the mind and concentration so have way to many

> limitations. This is definitely a day at a time illness.

>

> gayle/trans.6-99

> galye@... ^0^

>

> `

>

>

>

>

>

>

>

>

[Guest guest]

Hang in there Gayle, we are here for you. Wish there was more I could do.

Will send those prayers up right now. I know what you mean, even though it's

not me with the illness I can feel the stress building. I am getting away

this week end, my Dad and Stepmother have a place about an hour from here on

the river. My husband is going hunting and I'm going with them to do some

fishing. My dad said I'm trying to do to much and need a rest. I will be

close enough that if Jodi needs me it won't take me long to get home. Maybe

he's right, if I'm not at my best I can't do my best for her.......My

grandson tried on his Barney outfit for tomorrow night and he looked so cute.

We almost didn't get him out of it, he wanted to keep it on.........How is

your Jodi doing? Tell her hello and I will talk to you later. Hope you feel

better tomorrow, get some rest. Thinking of you, Genny/Jodi's Mom

[Guest guest]

Hi Joan,

That would be nice if you could be at my screen door and we could visit. And

no I am not having a better week. I wish I could say I was. Now I have a

yeast infection, then came down with some infection in my lungs. So now I am

on two antibiotics. I have been so sick the past two days and today couldn't

get out of bed. Then I started running a fever. I have no idea what a fever

means to me, as my temp since transplant has run 97 if I am lucky. Even the

last infection I had earlier this year wasn't as bad as this. I am so behind

in my mail. I am shaking so bad it is hard to type. I have to chase the words

around the keyboard. Thank God for spell check. I have just learned to not

take advantage of a low immune system it kicks my butt.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Gayle,

Are you keeping yourself hydrated? Please make sure you drink. A yeast

infection is the worst. Just when you think you can't feel any worse

that creeps up on you. Has anyone been to visit? I'm assuming you have

been to the doctor, is it ok that your home and not in the hospital. I

can't figure out why when people are so ill they don't admit them into

the hosp. I mean even if it's only to keep an IV going. Please be

strong, stay warm, rest and keep drinking.

Joan Claffey

NJ

galye@... wrote:

>

> Hi Joan,

> That would be nice if you could be at my screen door and we could visit. And

> no I am not having a better week. I wish I could say I was. Now I have a

> yeast infection, then came down with some infection in my lungs. So now I am

> on two antibiotics. I have been so sick the past two days and today couldn't

> get out of bed. Then I started running a fever. I have no idea what a fever

> means to me, as my temp since transplant has run 97 if I am lucky. Even the

> last infection I had earlier this year wasn't as bad as this. I am so behind

> in my mail. I am shaking so bad it is hard to type. I have to chase the words

> around the keyboard. Thank God for spell check. I have just learned to not

> take advantage of a low immune system it kicks my butt.

>

> gayle/trans.6-99

> galye@... ^0^

>

> `

>

>

>

>

>

>

>

>

[Guest guest]

Gayle,

Are you keeping yourself hydrated? Please make sure you drink. A yeast

infection is the worst. Just when you think you can't feel any worse

that creeps up on you. Has anyone been to visit? I'm assuming you have

been to the doctor, is it ok that your home and not in the hospital. I

can't figure out why when people are so ill they don't admit them into

the hosp. I mean even if it's only to keep an IV going. Please be

strong, stay warm, rest and keep drinking.

Joan Claffey

NJ

galye@... wrote:

>

> Hi Joan,

> That would be nice if you could be at my screen door and we could visit. And

> no I am not having a better week. I wish I could say I was. Now I have a

> yeast infection, then came down with some infection in my lungs. So now I am

> on two antibiotics. I have been so sick the past two days and today couldn't

> get out of bed. Then I started running a fever. I have no idea what a fever

> means to me, as my temp since transplant has run 97 if I am lucky. Even the

> last infection I had earlier this year wasn't as bad as this. I am so behind

> in my mail. I am shaking so bad it is hard to type. I have to chase the words

> around the keyboard. Thank God for spell check. I have just learned to not

> take advantage of a low immune system it kicks my butt.

>

> gayle/trans.6-99

> galye@... ^0^

>

> `

>

>

>

>

>

>

>

>

[Guest guest]

Thanks so much Gayle, Genny

[Guest guest]

I will try to quit and maybe that will help Jodi. Now getting my husband to

quit is another matter. So sorry you are having such a hard time. My mother

who has ITP has tried just about everything. She only buys one pack at a

time and at night what's left goes in the sink. Then in the morning she will

do without as long as she can and then go to the store to buy another pack.

She goes through this every day. She has smoked for many years and at times

over a pack a day. She knows its killing her but people like my stepfather

who has never smoked just doesn't understand. Take care and I hope things

get better for you soon. Love, Genny/Jodi's Mom

[Guest guest]

Genny,

Why is it that smoking is so addicting. I would sit smoking and loving it

look at the damn thing and tell myself how stupid why are you sucking in

smoke, what can the purpose be? Trouble is you can't stop thinking about it

either. I wish you well. For myself I take each day at a time now. I have way

too many adventures within my medical maintenance.

gayle/trans.6-99

galye@... ^OO^

[Guest guest]

Gayle,

I've read that smoking is more addictive than heroin and I

personally believe it. Consider that a smoker may light up 20, 40,

60,or 80 times a day vs. an addict that fixes maybe three times?

Smoking is reinforced so often. I know how hard it is to quit as I

smoked 2 packs a day for 27 years. Each night my lungs gurgled like

a seltzer bottle. I tried hypnosis, nicotene gum, Smokers Anonymous,

and couldn't quit. Finally I used the patch and found it helped me

to tolerate the physical withdrawal. But the psychological need was

a tough habit to break.

As others have stated, you'll quit when the time is right for

you. And there are no good, bad, evil, or judgmental labels to

attach to a smoker. Believe me, I am no holier or saintly a person

today than I was when I smoked.

I'll send some prayers for you that you are at peace with

yourself whether you chose to smoke or not.

Patty O

> Genny,

> Why is it that smoking is so addicting. >

> gayle/trans.6-99

> galye@a... ^OO^

[Guest guest]

From what I can tell from all the court hearings they had about smoking is

they put stuff in them to cause addiction. Yes, I know it's stupid cause I

can be at work all day and not even think about it and the first thought that

enters my mind when I walk in the door at home is now you can smoke. You

know as long as I stay busy I don't smoke but let me sit down to watch TV or

get on this computer and I want one so bad.......Don't back slide girl, it

sounds like your doing good. Take care, Genny

[Guest guest]

Genny,

I will never smoke again. Breathing has become more important.

gayle/trans.6-99

galye@... ^OO^

[Guest guest]

Oh Gayle I wish I could give you a hug right now. Does Jodi work a lot or is

there other reasons she can't go to the doctor with you sometimes? I'm sorry

I shouldn't be nosey but sometimes people don't know what you need. At times

I feel I try to do to much for my Jodi and maybe she feels smothered. If so

I would like for her to tell me, it wouldn't hurt my feelings but she needs

to tell me what makes her happy and feel good. Maybe your family needs to

hear from you that you would like some company going to the doctor this time.

I know they love you so give it a try O.K.? It's a very good feeling to be

needed but not so good to feel needy. Feeling needy at times doesn't mean

that's how other people see you. I don't see Jodi as needy but I know she

feels bad when I go clean house for her or do laundry cause she says so. I

tell her just wait one day she will have to feed me and change my depends.

LOL Please no, I want to go to heaven before I get to that state. Take care

Gayle and know we are here for you. God bless, Genny/Jodi's Mom

[Guest guest]

Gayle, it is hard to think about other things when you are so ill. I think

maybe the reason your Jodi is unconvertible talking about your illness is

because she wants to be strong for you. Sometimes it's very difficult to

hide the worry you are feeling but in my case I don't want Jodi to feel like

every time we are together we have to talk about her disease and the what

ifs. This is very hard because in the back of my mind I want to know how she

is feeling today, is she going to consent to a living donor transplant from

me if it comes down to that ect. At Thanksgiving she came right out and said

to me lets not talk about me being sick while we are around the family. I

know she gets tired of people asking her questions and telling her she

doesn't look sick, as a matter of fact she looks better than she has in six

years. They just don't understand what people with AIH, liver disease,

cancer and other life threating illnesses are going through. I don't know

first hand but I can see how tired and moody Jodi is. It's hard for me to

talk to my mother about Jodi because she is so depressed herself from the

Prednisone she has to take for her ITP. Ever since I told her Jodi was going

on the transplant list when we talk she cries. Tells me that if she were to

lose both of us that would be the end of her. I tell her we all just have to

pray real hard that God will look after us. I will pray for you too Gayle.

I so hope you feel better soon. Write anytime, you take care and have some

good times with those grandchildren. Love, Genny/Jodi's Mom

[Guest guest]

Genny,

I am sure that Jodi is very afraid right now. All of this is a total shock

being the age she is to be so sick. And the words transplant list took her

breath away didn't it. Talking transplant was the last thing I wanted to hear

but I had no time for preparation as being an emergency. But what I can

remember, there was only one doctor a student that came in and announce

needing surgery to live. I sobbed and was so scared and no where to turn.

Jodi is probably having to face all of her emotions and she feels very alone.

Very important she asks about counseling to help adjust. As she gets sicker

she will be wanting a liver. My friend who had to wait 18 months to get a

liver was failing fast yet she kept positive thoughts while waiting. In fact

she packed her suitcase bought special nightgowns slippers, she even put

craft projects in her bag and entertainment stuff for after surgery to keep

her occupied for the hospital stay. She stayed very excited. And like me did

not want to die. My transplant was at such a desperate moment the docs were

not sure I would live. The docs expected me to have brain damage and maybe I

did sustain some, my family calls it the morphine talking in flashbacks. All

you can do is urge her to voice her feelings and mainly be there to listen.

She probably feels talking to anyone not in her shoes won't understand her

thoughts. Most of the time it is true.Thats what makes this group special.

Has Jodi shown any interest in joining and posting and asking questions? Jodi

has much to accomplish now more than ever and as Cheryl says know everything

you can about every procedure how it is done. Educate yourself so you know

more about what will happen than the docs. This alone will arm her to deal

with her future. Try not to think about what if she doesn't make it but when

it happens. I went into a coma 2 days before I almost died when I got the

liver I knew it and in my mind I talked to the new liver, we bonded the

minute we became one. My liver today is very strong and happy it is the side

effects that makes adjusting difficult.

gayle/trans.6-99

galye@... ^OO^

[Guest guest]

Gayle, glad you got that liver when you did. Jodi is very blessed that she

has been feeling well enough to continue to work full time. She is not a

stay at home kind of person and it would give her to much time to think about

all of this. She was here for supper tonight because Wed. is her late day at

work and I always pick up Colt and fix them supper. We only had a little

time to talk for I go to church at 7:30. Cherly E-mailed me the other night

and I was telling Jodi some of what we discussed. Jodi doesn't have a

computer but I print out some of the posts I receive for her. She is having

problems sleeping again. This happened when she first started the meds but

got better, now it's happening again. She also has to be careful when she

takes her diuretics so she won't be up all night going to the

bathroom......You mentioned you are having side effects. Are the medical

problems you are having now the side effects from the transplant and meds? I

know the transplant won't cure everything but please don't tell me after all

of that she will still be really sick? I hope you start feeling better soon

Gayle. Know I am praying for you. Talk to you soon. God bless, Genny