Re: Digest Number 277

September 17, 1999

I just got back from the Dr. and she said that I have " bile " in my urine.

I know right now I'm having liver problems, could the arthrotec be causing

this?

Any information would be greatly appreciated.

Thanks

le

September 17, 1999

> It is interesting that I have not heard anyone else mention a problem with

> waterbeds.

Hi,

My husband and I always had a waterbed from the time we met ( it was his and

he brought it along!). I was diagnosed in 1993. I won't go into any great

detail but it was classified as severe. The water bed never made me feel any

better, but I never thought about it. I was a free flow and the problem for

me was getting out of it. It had those wooden sideboards, so I use to have

to rock myself to get out. I finally had enough in 1997 and we took out the

water mattress and got a king size hard matress. WELL! What a difference. I

love it. The waterbed WAS making me feel worse and I will never have a

waterbed again.

July 21, 2000

In a message dated 7/21/00 5:19:07 AM Eastern Daylight Time,

egroups writes:

<< Hi Gail!

It's great that Seth will have an aide that you can trust. Maybe the school

can video tape the other aide on the sly doing her " aiding " and then fire

her. She certainly doesn't sound as though she has any training of any kind

and she sounds like she may even resent taking care of children that require

more help.

Judy >>

Thanks Judy. They say the girl works well with older, advanced Autistic

kids. Big difference in helping a kid read and helping Seth push a ball in a

can! Hope they put her back where she wants to be and where she works well.

It's not fair to Seth, the teacher, the aide or the entire program to have

things like this happen.

Gail, Mom to; Seth-4, jo-7, Becky-9, -23, Jen-24, Grandma to Errick-4

and wife to -my hero

July 21, 2000

I never received digests 275 and 276. Just FYI.

Talk to you all later.

MB

September 5, 2000

Just remember, do whatever you can, and plans for the " spurts " of energy

you have, and rest the other times. It is going to be slow, frustrating,

and " depressing " , but, if all goes well, it is only 1 year out of your

life, and then you get to find all the stuff that you never appreciated

before, and can do after therapy. It may stink, but, uncertainty and

doing nothing is worse. This is when you do what you can and try to

remain as positive as possible. Marty

September 5, 2000

Just remember, do whatever you can, and plans for the " spurts " of energy

you have, and rest the other times. It is going to be slow, frustrating,

and " depressing " , but, if all goes well, it is only 1 year out of your

life, and then you get to find all the stuff that you never appreciated

before, and can do after therapy. It may stink, but, uncertainty and

doing nothing is worse. This is when you do what you can and try to

remain as positive as possible. Marty

September 5, 2000

Dear AlleyPat:

That is hot for Texas, and I've noticed that you are getting more

than your share of heat this year. It has been hot in Florida, but, it

has been steady, so you learn to deal with it. You could always sit in

the Mall where the A/C is free.

Also, one thing that most people on treatment go through, is that

their bodies have problems with the regulation of sugars. This will

cause weakness, dizziness, lightheadedness, muscle cramps, and many

other problems. In some ways it is similar to a diabetic, except that,

their problem is not usually the how the sugar is used, but how much

sugar versus insulin is floating around. The " hepper's " problem comes

from not enough sugar to be broken down that your body wants, or stores.

Marty

September 5, 2000

Dear AlleyPat:

That is hot for Texas, and I've noticed that you are getting more

than your share of heat this year. It has been hot in Florida, but, it

has been steady, so you learn to deal with it. You could always sit in

the Mall where the A/C is free.

Also, one thing that most people on treatment go through, is that

their bodies have problems with the regulation of sugars. This will

cause weakness, dizziness, lightheadedness, muscle cramps, and many

other problems. In some ways it is similar to a diabetic, except that,

their problem is not usually the how the sugar is used, but how much

sugar versus insulin is floating around. The " hepper's " problem comes

from not enough sugar to be broken down that your body wants, or stores.

Marty

September 5, 2000

Dear Lora:

Thanks for the compliment. I have taught and lectured, in High

School and College levels, but, one of the nice aspects of being a Nurse

Practitioner is that you sort of move towards that field because you

enjoy the teaching aspect. When I see any patient, to me, a very

important aspect is that I want them to understand what is being looked

at, why, and the importance.

I always tell anyone new that we need to do this as a " team " , and

that includes patients, other staff, etc. Patient's think I am joking

when I say I want them to be as knowledgeable as possible about their

problem and care, because it helps them and keeps me honest. I also

never hesitate to take a cue, or ask or answer questions from other

staff members, no matter what their " title " is, because experience is

underrated, and many of these same people have been around for some

time.

That is one of the nice things about this group, everyone is sharing

and learning from everyone else, and that is an important part of any

therapy. What it says in a text book is usually not what is true for the

real world. But, when everything is put together, that is to everyone's

advantage.

I also remember sitting in many classes, and the teacher would be

talking at the " 20+ foot level " , and I would be lower than the chairs in

understanding. I had an Organic Chemistry teacher once, who was

lecturing to over 500 students. He was the youngest person in the

World, in his subspecialty of some aspect of chemistry that it was

impossible for him to come to a neutral level for anyone who was not as

bright as him.

But, as I have learned over the years, and many degrees later, if

something can be explained to another, without putting them down as

being stupid, or, too high that they can not understand it, everyone

comes out better. Also, if people would question, (as they should), and

their provider would answer, even if it means " I don't have an exact

answer let me look that one up " , there would be less malpractice suits,

and better care for all concerned. But, that is just the way I approach

it, and I am flattered that you took the time to respond, as well as

glad that it could be of some help.

There is one more important thing that I hope others will read. When

this list serve was first started, the majority of people were either

just diagnosed, beginning, or somewhere in their therapy. Everyone

quickly hears about the problems, and the majority of people here have

come either because of previous failure, or how they are doing with

therapy. At the beginning, this site, to what I can recall, never picked

up the successes, because they were not drawn to this site.

Also, if someone is in remission, why do they need to discuss or

read other's problems. They are done, and we may hear from those that

have been successful, but usually they drop off. So, when someone new

comes, it is usually during periods when people are either in therapy

and talking about their experiences, or, have not done well, and may

have a more bitter attitude. The most important thing that we all must

remember is that, by the design alone, you will hear about the problems

and not the successes as quickly. I believe the saying is " if it is

good, you might tell one person, but if it is bad, you will tell 8-9

people " . So we tend to hear more of the bad, even though there have been

some very good outcomes from people who were on this list. Marty

September 5, 2000

Dear Dee Dee:

You probably won't change your husband, and certainly not by

yourself. Many you could find a support group that you both can share,

or one that helps the spouse/significant other understand what the

patient may be going through. I am sure he also has his own fears,

frustrations, and uncertainties, but, somehow he has to understand what

you are going through, or you both may explode. There are too many cases

of separations, or divorce, during any chronic illness and treatment,

and HCV is no different.

Also speaking from the spouse side, and not the patient, it is still

hard not to worry, watch someone who is ill go through pain and

everything else, but, that's what any of us signed on for. It is easy

when everything is going great, but, if the " shoe were reversed " would

he expect and do the same? As a spouse I have found great sources for my

wife, but not as many that deal with her and me, or just me. So, kick

him in the rear, and try to get him to understand and share, because it

will prove very helpful for everyone. Marty

September 5, 2000

Dear Dee Dee:

You probably won't change your husband, and certainly not by

yourself. Many you could find a support group that you both can share,

or one that helps the spouse/significant other understand what the

patient may be going through. I am sure he also has his own fears,

frustrations, and uncertainties, but, somehow he has to understand what

you are going through, or you both may explode. There are too many cases

of separations, or divorce, during any chronic illness and treatment,

and HCV is no different.

Also speaking from the spouse side, and not the patient, it is still

hard not to worry, watch someone who is ill go through pain and

everything else, but, that's what any of us signed on for. It is easy

when everything is going great, but, if the " shoe were reversed " would

he expect and do the same? As a spouse I have found great sources for my

wife, but not as many that deal with her and me, or just me. So, kick

him in the rear, and try to get him to understand and share, because it

will prove very helpful for everyone. Marty

September 5, 2000

Marty said <<You could always sit in the Mall where the A/C is free>>

And walk in 111 degree heat from the car to the mall? No thanks lol.

Good info about the sugar.

It took only one interferon shot to get rid of my muscle aches, cramps and

joint pain. Course that doesn't mean it won't come back. But man, only then

did I realize for how long and how much pain I put up with.

Today is the first day I've had " flu - like " symptoms from the treatment.

Feverish but skin is cool, woozy in the head, queasy tummy, drowsy like when

your tired from being sick. Hey, maybe it's the flu! haha. Made it thru

work, but the ibuprofen didn't help. The fioricet did help some.

So far, so good!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

September 5, 2000

Marty said <<You could always sit in the Mall where the A/C is free>>

And walk in 111 degree heat from the car to the mall? No thanks lol.

Good info about the sugar.

It took only one interferon shot to get rid of my muscle aches, cramps and

joint pain. Course that doesn't mean it won't come back. But man, only then

did I realize for how long and how much pain I put up with.

Today is the first day I've had " flu - like " symptoms from the treatment.

Feverish but skin is cool, woozy in the head, queasy tummy, drowsy like when

your tired from being sick. Hey, maybe it's the flu! haha. Made it thru

work, but the ibuprofen didn't help. The fioricet did help some.

So far, so good!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

September 5, 2000

Dee Dee... won't be long and YOU " LL be the one offering your experiences to

someone else, giving them hugs and listening to them It's an ongoing

process of caring and sharing.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

September 6, 2000

Marty,

I always seem to come away calmer after i read your postings. This one is

especially important to me because, as you say, we mostly hear the negative,

but there are plenty of people out there who are doing OK and not suffering

tooooo horribly on the combo. I hope to be in this group, and if I am, I

will be sure and let you all know. If not, and the sides are horrible, I

hope to be able to focus on the positive and not dwell on the negative.

However, it is indeed nice to know that we are not alone, or crazy.

I had begun to think that I was crazy because I was soooo tired all the time.

I could hardly keep my eyes open. With two teenagers and two preschoolers,

it, of course, was no wonder that I was tired! LOL!

So, with one day to go, (my appointment is Thursday at 11:00) I read, I relax

and I prepare mentally. I am very anxious, nervous and tense, so am trying

hard to relax. I just want you to know that you have been a tremendous help

to me personally and I am sure to lots of others.

Thank you so much for your words of wisdom and encouragement.

Lora

September 6, 2000