Re: Digest Number 142

November 3, 1999

Hi Ajit,

What I have done and I share your pain I had the same happen

to me could not sleep all night. What I did was take two Extra

Strength Tylenol. Also drink a glass of Milk not with the Tylenol

but separately. I hope this helps you

Stay well

Bob

January 29, 2000

I was also mis-diagnosed w/ Freidrich's Ataxia, and thank God they

finally ruled it out. I have a friend with advanced FA, and she can

barely feed herself. I had genetic testing, and I know I dont have CMT

type 1a. I really need to dig around and match symptoms to types and

'guess' what I have.

Rhonda

January 29, 2000

Hi all

This is in regards to Alisha I take norflex for my pain and it seems to

help me quite a bit maybe ask your Dr. about it. I get stiff and ache

and I only take it at the most worse times. I try to handle the minor

aches and do understand what you are saying about cold hands and feet .

I can't quite figure that one out either because I am suppose to have

good circulation. Can anyone else reflect on this? Trust me its not

in your head!!

CSCluv**

January 30, 2000

Hoping and Praying for your SPEEDY recovery; Glad to know the surgery seemed

to have gone well! BE Careful and don't push yourself to hard in the

beginning. Take time to gain strength!

^A^ ^A^ ^A^ ^A^ ^A^ ^A^

Guardian Angels be with you during your recovery!

Love Libby

__________________________________________

NetZero - Defenders of the Free World

Get your FREE Internet Access and Email at

http://www.netzero.net/download/index.html

February 2, 2000

HI CATHY

WHAT'S NORFLEX?

THANKS

DIMITRIOS

GREECE

cathy Culp wrote:

> From: cat926@... (cathy Culp)

>

> Hi all

> This is in regards to Alisha I take norflex for my pain and it seems to

> help me quite a bit maybe ask your Dr. about it. I get stiff and ache

> and I only take it at the most worse times. I try to handle the minor

> aches and do understand what you are saying about cold hands and feet .

> I can't quite figure that one out either because I am suppose to have

> good circulation. Can anyone else reflect on this? Trust me its not

> in your head!!

>

> CSCluv**

>

> ---------------------------

February 13, 2000

In a message dated 2/14/00 6:25:32 AM, onelist writes:

<< Illustrated bath bomb instructions:

http://www.ncf.ca/~aj471/BathBombs.html >>

Hello everyone. this is a wonderful and artful piece of work. I

finally found a supplier for citric acid. Was delivered to my door and just

left there. When I got home it was gone. Someone will have fun with 8 lb. of

citric acid!!! Vendor is resending to me.

When I make the mix, I use large ziplock bags, It keeps the ingredients

fairly moist when molding. Also keeps the surrounding area cleaner. I will

try cold press soap this spring when I can open all the doors and windows. In

the meantime I am learning so much from all of you. Thank you. My late

husband had an amateur perfume lab. Many of his essential oils are still in

storage. I am looking forward to checking it all out and perhaps if

appropriate, using some in my toiletries. Thanks again for everything. All

the best from Pa. Vivian

February 14, 2000

I've been hearing a lot of mention about hp soap. What is hp soap? Can you

still add

herbs, spices, fragrance to this type of soap?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Annissa Naturals House of Soap

http://www.annissanaturals.com

" She is a tree of life to them that lay hold upon her: and happy is everyone

that retaineth

her. " ~Proverbs 3:18

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Get 100% FREE Internet Access from Freei.Net. 100% FREE, 100% Anonymous, 100%

Jam Packed with features. Check us out at http://www.freei.net.

March 3, 2000

Hello everyone, slowly but still recouping from my back surgery, have missed

everyone and being on line , just able to sit up for short lengths and have

tons of email to catch up on, hello to all new members since I have been gone

amd thanks so much for all the prayers and thoughts

I have recieved, know that I felt them and along with my faith, sure

got me through it. Will still be browsing my digest from time to time to go

through all my email, so just wanted to drop a message, still alive, just

moving slow but surely, lol, feel like a slug, not being able to do much,

love to all of you and oh think this link will help in finding some

neat crochet items : <A HREF= " http://members.aol.com/SAG55/index2.html " >CROCHE

T COLLECTION</A>

Love and God Bless,

Kay

May 7, 2000

Marty,

Thank you for your thoughts. I understand how hard it must have been for

you

both. I am so happy your wife is undetected and finished with treatment!

I would like to share your letter with my husband if I may?

We discussed whether to do treatment or not to do treatment on the way

home

from work Friday, weighing the pros and cons. Lots of cons. However, two

factors really stand out - I feel awful with this hep, and there's a

chance

to be rid of this virus.

I'm 44, 45 in a few months. I'm premenopausal. I've many years left to

live

and enjoy my grandchildren. If I continue on as I have been, my hep

symptoms

making me so very tired and achy, I can see me quitting work in a year

or

two, just unable to maintain a regular job. I wish I could quit now.

Many

days I do not want to get out of bed.

However, if I do treatment now, I've a chance to live the rest of my

life

hep free, to be able to return to some kind of " normalcy " . As a creative

person, this means a lot to me.

Then there are the cons of treatment - illness, possible thyroid,

diabetes,

heart or lung problems, etc. Yet those are small chances and most of

them,

if I understand what I read correctly, go away after treatment if they

happen at all.

When my husband first heard my gastro speak at our support group, he had

tears in his eyes. I think it was the first time in 10 years he realized

the

mortality of this disease. He wouldn't discuss it with me for 2 weeks

after,

but finally did. I had been living with the symptoms since 89 and it

amazed

me that he was just now, in 99, beginning to understand the scope of

hepatitis C. He's a wonderful husband, very loving and attentive, yet

like

anyone else who has not experienced a chronic disease, he just had no

concept.

I have a viral load of about 1.3 million. The doc says low viral load is

good, easier to get into remission. My genotype is 1b, not great, but,

like

your wife, I do know some people with the same genotype who have gone

into

remission. My biopsy was " very mild fibrosis/inflamation " .

So do I wait around perhaps 10 years and I'm 55 or older for treatment,

still feeling so bad I can barely keep a job, already having to alter my

career path from a stressful demanding exciting job I love to one where

I

sit on my bottom all day doing mindless work, or do I go for the

treatment,

giving me a chance to rid myself of this debilitating virus, yet knowing

the

treatment is no fun ride?

Yes, I'm scared to death of treatment. I haved talked to many many

heppers

over the years, both in person and online, and know pretty much all the

sides. If I do treatment, I still must work. That I think will be the

hardest part. Can I do it?

Doc says if I want to do treatment, and then it gets too much for me, I

can

stop and wait for something else because I do have some time. That at

least

is an option " out " . I like having options.

I'm so very tired of feeling crummy every day, of not doing things I

could

be doing. For someone who used to press 150 lbs 3 times a week and

jazzercize when she discovered she had hep 10 years ago, today I'm in

pretty

sad shape.

Marty, give your wife a big hug for me. Does she know you're on the

list? I

think we would all like to congratulate her. She's a hep hero as far as

I'm

concerned!

Yall's comments are appreciated. I'm scared of treatment cause I know it

will be hard to continue working with it, and I'm scared not to do

treatment

cause it's already hard to work everyday feeling so icky. Damned if ya

do

and damned if ya don't. Thanks for listening

alley/

ICQ 12631861

alleypat@...

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

Dear AlleyPat:

Thank you for your nice comments. My wife is not on the list, but, I

do forward her some of the information. If you really want to reach her,

she uses a slightly different E-mail address of:

byteme1@..., and her name is Debbie.

Initially she was involved, but, like many, she quickly became over

whelmed and did not want to focus on many issues. So, I acted as a

buffer, and only forwarded her some of the items, in a digest form. But,

if you want to get how she, as the person who had the virus, felt, only

she can tell you.

During her therapy, she was able to work full time, and under

hellish conditions. She's teaches elementary school in an " inner city "

school. The year has been really tough, not because of the kids, but

because of the inept principal, and a school district that does not care

about these kids, because they believe that can float on previous

merits. Maybe, some of this was good while she was undergoing therapy,

because, she had an additional avenue to funnel some of her anger from

the disease and her work, (not the kids).

It also allowed her a way to forget the illness, even if for a short

time. She did use many of her sick days, and she was fortunate in that

she had, and could use them. While some of the sick days were directly

related to the dragon and therapy, others are not as clear because it is

hard to tell whether the situation in her job was causing her to feel

more lousy, or, she would have felt that way from the virus and

treatment alone.

Although a provider, some of these areas are not easy to isolate,

and I am sure they are impacting on each other. While I can explain how

I felt as a husband, like yours, she is still my wife, and sometimes to

keep my sanity, I had to focus on the medical aspects, which many do not

have the opportunity to use. As a spouse, I understand what you and your

husband may be feeling. But, I can only address it from the spouse point

of view, and, while I have studied the effects, I do not have the

disease, and can not truly say I understand in full.

Maybe my wife can share some of the feelings, positive and negatives

of someone having the disease. For my part, I can say I was, and still

are, scared of what the future will bring. She is a responder, but,

until the 6 months post treatment have passed, as well as probably

several years, this will always be in the back of my mind.

It is always easier to treat someone that you do not have a special

relationship with, then to be close to the patient. With a patient, you

treat the illness, and listen to the person during the time they are

with you, and, eventually they get better, or you refer them to someone

else. But, when it is someone you know and care about, (as was studied

in the case of AIDs), too many emotions can create questions about the

care.

I do believe if you are eligible, and can tolerate it, getting

treatment early is better then none at all. But, the hassle is you are

playing a guessing game. These are some negatives: If you can tolerate

the treatment, you will feel lousy during the therapy, with no

guarantees. If you start therapy, you may not tolerate it well and have

to stop. Even if you finish the therapy, you may not remain in

remission. Also, several cases in the world, although a very small

number, have had permanent side effects from the therapy, including a

few where the treatment destroyed their nervous system. Also, you can

have some of the problems you mentioned, such as thyroid disease, and

other medical problems, as well as create quasi species of the disease.

Or, you could get hit by a bus or plane, and not make it to finish

therapy.

But, there are many reasons to try the therapy. You may be

successful and remain in permanent remission. If you are not treated you

may develop cirrhosis or liver cancer that will eventually place you

into a position where a transplant is your only alternative, and there

are very few livers. You may stop the progression of the disease, and if

nothing else, stay the same until a better treatment is found, or a

cure. If nothing else, you can say you tried, and that counts for

something.

Don't you live in Florida? May be it would be easier if you wanted

to talk on the phone, and that could make it easier for your, and your

husband's questions. If I can help, let me know. Just remember you are

not alone with all of this. Marty

May 7, 2000