Hi Everyone

[Guest guest]

Betacarotine is BAD for the liver. The Dr. Koop site has not been

updated in over 2 yrs so their info is not so good....

LeighAnn

http://www.geocities.com/1Leighann

[Guest guest]

Betacarotine is BAD for the liver. The Dr. Koop site has not been

updated in over 2 yrs so their info is not so good....

LeighAnn

http://www.geocities.com/1Leighann

[Guest guest]

Thank you, Ellie. I'm so glad I found this list. We already

feel so much less alone in this journey than we did a few days ago!

Pam ('s mum, 4, Systemic)

skyley8@... wrote:

Hi

Friends, well, now that school has started I'm hoping to have more time

to check in and keep up with posts. I've skimmed through the posts

and I wanted to say to Soili that I totally agree with Michele. It's

terrible that those people are attacking you for their sons illness and

I've said it before, you are an amazing woman. They are very lucky

to have a person like you as the primary caregiver of their son and more

importantly he is very lucky to have you. Hang in there.

I also wanted to say welcome to Pamela and , my heart goes out to

you. I know as we all do how difficult it is in the beginning.

My daughter was diagnosed with polyarticular jra in May after spending

April looking for the correct diagnosis. It was a very difficult

time for our family and I don't know what I would have done without the

people here. It does get easier, being there for others on this list

has also helped me. Hang in there and if you ever need to vent we

are here for you.

To everyone else, I have missed you. I hope everyone is doing well.

I look foreword to touching base with you all again.

Wishing

everyone a lovely pain free weekend.

xoxo,

Ellie and Riley 5 poly

[Guest guest]

Judy, I'm glad to hear that you're doing better, and I'm so glad you went to the

party. These little ones grow up so fast that we hate to miss any one of these

special moments.

Marilyn

Hi Everyone

Just thought I'd report in and let you all know how I'm doing.....the shot was

Thursday night....yesterday I was tired but managed all day without laying back

down....went to the birthday party and really enjoyed myself.......today, I'm

feeling fine....still have the low grade temp and yes I'm drinking plenty of

fluids........this hasn't been near as bad as I thought it would

be.......everyone hang in there and have a fun day....love....judy

[Guest guest]

HI.Ofcourse you are loosing energy,you are on treatment and interferon is not

like taking candies.It.s not you but the interferon.Just take it as part of the

game of getting CURED.After you finished treatment,the best is for one year,your

energy will come BACK.Courage and don.t give up..

Hi Everyone

Hello everyone, I haven't heard from a few of you for a while.

How is everyone?

I am on week 22 and the last 2 weeks of shots I really felt fluish.

I feel like I am losing more and more energy.

Is that they way it has been for a lot of us on treatment?

Or is it just me and I should be doing something to help with this?

I wish you all a wonderful week,

Your fellow hepper,

Donna

[Guest guest]

Thank you Tatezi!

Your Friend ,

Donna

[Guest guest]

Thank you ,

I appreciate your words of encouragement.

I think I get tired of being tired.

I will remember your words.

Thank you

Your Friend,

Donna

[Guest guest]

Hi Donna....

Yes, I do believe that the longer you are on treatment the less energy you have.

But everyone reacts differently so there is really no standard. After 3-6

months, tx is known to often blow out the thyroid so be sure to keep tabs on

your thyroid....make sure your doctor tests it. I was 6 months into tx and kept

falling asleep at my desk...kept blaming it on tx but finally went to the doctor

and had my thyroid test done. Well, normal thyroid TSH is .5-5.5 and mine was

clear up to 110. It wasn't the tx that was causing the extreme fatigue but the

fact that I basically had no thyroid. So do get that checked.

Hang in there....this is only a year out of your life and you can make it!

Tatezi

Hi Everyone

Hello everyone, I haven't heard from a few of you for a while.

How is everyone?

I am on week 22 and the last 2 weeks of shots I really felt fluish.

I feel like I am losing more and more energy.

Is that they way it has been for a lot of us on treatment?

Or is it just me and I should be doing something to help with this?

I wish you all a wonderful week,

Your fellow hepper,

Donna

[Guest guest]

Hi Donna,

I've completed 14 weeks of combo. Nine weeks of Neupogen for white blood

count, and 6 weeks of Epogen for red blood count.

I began taking Zoloft 4 weeks ago.

I used to not be a pill taker, except for .125 Synthroid. Now I take 20 each

day (which includes Tylenol and Advil for muscle and joint pain). Seems like

my house is filling with medicine bottles. I'll be happy to see an end to it,

except that I've become a believer in calcium, multi-vitamins,

diphenhydramine for itching, and of course, the synthroid which will be a

life-long thing.

I can't tell whether or not the Zoloft had changed my demeanor. I may not

have been depressed to begin with, just impatient (which is uncharacteristic)

and a little cranky from not sleeping well. The doctor really talked me into

taking it, saying, " You can always stop taking it if you don't like it. "

So, like you, I guess I'm feeling more tired than ever. It sometimes seems

like treatment is passing quickly, and then sometimes another 34 weeks seems

like such a long time. I'm lucky that I can go home each afternoon and take a

nap. Would be much more difficult without that.

I know you'll be able to hang in there. You're almost halfway done. I'll be

anxious to hear about your 24-week labs. You're 1a, correct?

I'll be pulling for you.

Your friend,

Gene

[Guest guest]

Oh Thanks Gene, here I complain and you are enduring so much.

I should be ashamed of myself.

I agree with you about time consideration on the treatment.

Please take the Zooloft till treatment is over. If you are not depressed it

will at least keep you from becoming depressed.

I gave my resume's to a couple of salons today. I think working may help the

time go by better. I just think it would be incredibly hard to begin work in

the middle of treatment. I don't know how you do it. I think I could pull off

maybe 4 hours a day. Anymore... I don't think I could do it. So you are being

really strong.

I know I felt really edgy in the first 3 months of treatment. And I had to

cut back on over doing too many things. The stress I normally handled I

couldn't deal with anymore. I think that became better after the first 3

months. So it is right around the corner for you !!!!

Yes, I am 1a bridging fibrosis. Virus is undetectable now. Liver enzymes

still show damage.

What mg. of zooloft are you taking?

I was on 100 mg. and went up to 150 mg.

It has meant a lot to hear from everybody.

It is good to know people who really understand.

I find it extremely difficult for people to understand how I feel because I

look so good. (he he) You know, I don't have a huge gapping wound for all to

see.

Thanks everyone,

Your fellow hepper

Donna

[Guest guest]

Oh, thank you Claudine,

You are so very knowledgeable.

Thanks,

Donna

[Guest guest]

In a message dated 10/21/2002 12:53:42 AM Eastern Daylight Time,

Mscue40@... writes:

> Hello everyone, I haven't heard from a few of you for a while.

> How is everyone?

> I am on week 22 and the last 2 weeks of shots I really felt fluish.

> I feel like I am losing more and more energy.

> Is that they way it has been for a lot of us on treatment?

> Or is it just me and I should be doing something to help with this?

> I wish you all a wonderful week,

> Your fellow hepper,

> Donna

>

>

Dear Donna,

I experienced slumps, too. My solution was to take vitamin C and eat food

like egg drop soup. Keep taking whatever supplemental vitamins you were on.

We all had good days and bad on treatment.

LOL,

Anne

[Guest guest]

In a message dated 10/21/2002 12:53:42 AM Eastern Daylight Time,

Mscue40@... writes:

> Hello everyone, I haven't heard from a few of you for a while.

> How is everyone?

> I am on week 22 and the last 2 weeks of shots I really felt fluish.

> I feel like I am losing more and more energy.

> Is that they way it has been for a lot of us on treatment?

> Or is it just me and I should be doing something to help with this?

> I wish you all a wonderful week,

> Your fellow hepper,

> Donna

>

>

Dear Donna,

I experienced slumps, too. My solution was to take vitamin C and eat food

like egg drop soup. Keep taking whatever supplemental vitamins you were on.

We all had good days and bad on treatment.

LOL,

Anne

[Guest guest]

Sherry Lynn,

Good luck to you as you start your shots. It sounds like you have a wonderful

and loving family there to support you. sounds like a fantastic young

woman, and I'm sure she will give you a lot of help.

Hugs,

Marilyn

Hi Everyone

Well, I take my 1st shot this friday. I got the ok from the surgeon

who took operated on my behind in sept. I am scared, but I will be

glad to get started. All the side effects though, I have my doubts,

but if it will help put this dragon back in check so that it won't

bother me as much, then it will be worth it, and if it doesn't work

for me, then I guess I will just have to wait til they decide to try

a new one.

My sister & her kids & grandchildren moved out over the weekend into

their own place, it is so quite and peaceful I don't know what to do

with myself. My step-daughter in school and hubby at work, it is

lonely here (but nice).

My step's mother will be coming over on fridays (we are close

friends) so that I won't be alone when I take my shots. She is going

with me when I go friday & we both decided to take pens & paper and

write stuff down so that I won't forget. Gosh this brain fog is bad,

half the time I have to look at my driver's license to remember my

name *big grin*.But then again, I can use it to my adavantage if I

forget to do something..I reall hate needles, but once a week is

better then 3 shots a week, how I hated that one. Got my flu shot

last friday, so I am ready for the flu season. I feel for my poor

strep-daughter though, It is time for the holiday baking, and she is

going to do most of it for me. I taught her last year how to make

bread and my grandmother's chocolate cookies(they got marshmellow &

walnuts on top) and they are a booger to mix, but I will try to help

as much as I can this year. I jsut thank God that her mom taught her

to bake & even better, she likes doing it.

(step) is making us proud this year, she is doing Marine

Biology as her major in high school & is maintaining a A+ average, on

top of trying to help me out. I keep telling her how much I

appreciate her & love her. She wants to become a Vet at Seaworld

after high school & college. I believe she will do it too!

I just hope that this post finds everyone in good spirits. To

everyone on the list, I want to say Thanks for being there for me.

Well, better go, don't want to write another book for you.Thanks for

listening again to me ramble. Have a good one group!

May God Bless you & keep you safe,

Sherry Lynn

[Guest guest]

Hi ita

You have certainly been through a lot! I live in the San Francisco Bay Area so can't help you with a doctor. But welcome.

Sally

[Guest guest]

I can appreciate the fact that you are very worried about your THR. I had one last fall October 7th, and I had kept myself as active as possible before but I just can't beleive that when I came out of surgery there was no longer any pain in the hip, I still have a sore back but that is another project. I guess what gave the courage without any fear is hat my mother had THR 32 years ago and before she had it she was unable to get into a car and could not walk any steps. After her hip replacement she went traveling ande got to the [point that she could cut her own grass with a walk behind lawn mower. So I felt that if they could help her they sure must be able to help me

lie

Hi Everyone

I'll try to make this as short and painless (no pun intended) as possible.I tend to be a long poster.I just joined this group as I am working up to the decision of having THRlater this summer or early fall.Here's the story. In 1988 (at age 36) I was in a horrible car accident witha head on collision with a 60 passenger school bus (that drivers fault asdetermined by law, not mine. She came over a hill on a country road on myside of the road) and my injuries were severe. I have been partiallyhandicapped since. I get around but in the interviening years since, it hasgotten progressively worse. I used to not do too badly physically but I'mabout out of time. The pain is exhausting and intense and for years I'vehad to go shopping for the Holidays in a wheelchair. I am now to the pointwhere I manage fairly well at home yet, although in constant pain (with aton of help from my husband) but I see more and more of my abilities to dothings I want to do as going away. We no longer eat at restaurants that arebuffet style as I can't comfortably walk a buffet line. I am fairlyhomebound and no longer do the grocery shopping and the like locally withoutmy husband. I take myself to the local Dr. the hairdresser and to mycounselor ( seeing one since the accident as it changed my life sodrastically) but that drive is 2 hours away and it kills me some times. Isometimes use a cane when I am able to swallow my pride and use it. Itdoesn't take the pain away, it just stabilizes my gait. I am 51 years oldnow. My son and daughter are grown and gone from home. Our daughter livesin Maine and we've driven there twice in the last 2 years since she movedthere (a 1400 mile drive). The first trip in a pickup truck nearly killedme and that was with rest stops and 2 nights in motels on the road. Thislast time we went in my car (again plenty of stops and 2 nights on the road)which has reclining seats and it was pure bliss if you can call laying downalmost all the way across country bliss!!The reason I say surgery this fall is that I am currently in extensivedental treatment (hadn't been to one since the accident as I was learning towalk again instead) and have to have oral surgery to remove 3 wisdom teethand because of my husbands insurance, it has to be done after the fiscalyear change July 1. So, surgery as I understand it should wait until I'mhealed from that because of risk of infection in the hip implant right?My original injuries were: open ankle fracture right ankle - shatteredright knee, now possessing bolts and screws to hold it together - compoundfracture of the right arm - 3 fractured ribs - left foot and ankle havepermanent nerve damage - left hip fractured in 3 places and pulled apart atthe hip socket, partial rehab only partially successful by being in thehospital for 3 months in traction on that side to pull the hip socket backtogether. One leg is shorter because of all of this but I can't ever tellwhich one!So, I am scared witless of THR as the limitations on my right side with theankle, which now is bone on bone when I walk, scares me as I think I canexpect to have to be non weight bearing on the hip replacement side for howlong?? Which means all weight bearing on that poor right ankle! I knowthere are many kinds of hip replacement options now over what there oncewas. I too am overweight, unfortunately having gained 60 lbs. since theaccident. I'm scared a Dr. will require me to lose weight before they willoperate and I don't know how to do that when I can't be active because ofthe pain.So, that's my story. I'm enjoying this group so far and know all of youwill be helpful for me in the long run. Everyone that I know who has hadhip replacement surgery says they wish they had done it sooner. In light ofall I've been through I'm not going to be a newbie to learning how to walkagain as I've done the no weight bearing (although the ankle was in slightlybettter shape then) to a walker to touch weight to crutches to cane tonothing for several years until it started this situation I have now.However I dread it all. I prayed this day would never come but it has.Anyone know an excellent orthopaedic surgeon in Central or Western Illinoisor South Eastern Iowa that is a PPO Dr.?Thanks for listening and Hello everyone.Sincerely,ita

[Guest guest]

In response to your question, my daughter's right eardrum was retracted. They placed a tube in the eardrum this past October and the ear is doing fine. She had a c-toma in the left ear of course.

Hi everyone

My son has a severe retraction of the ear drum, and after trying the ear popping thing for a few months, along with decongestants, our ENT decided to insert an ear tube today. Just before inserting the tube, he removed some kind of debris from his ear. Im not sure what this was, but he told me that this was what you dont want staying in the retraction pocket, as it can start a C-toma growing.He says he can tell in 4-6 weeks, whether or not the ear tube is going to correct the retraction. Has anyone had this completely reverse the retraction? Im hoping that is the case and we can avoid having the tympanoplasty. Any in-put from you all would be helpful. Our ENT said that he has seen this happen,although it doesnt always work that way...Any advice would be appreciated..Thanks....

[Guest guest]

Thanks Michele,

I guess we'll know when we go back in 6 weeks. He said by then he can see if it is going to take care of the problem. Im keeping my fingers crossed..!!! (We did discuss C-tomas again, and he told me not to mention that evil word...LOL)...so, I wont!!...Thanks for the reply...take care...

~*~Renonda~*~

[Guest guest]

Hi, Thanks for the reply, I hope he got all of it out of there, and having the tube in should prevent this from forming again..We have discussed the reconstruction of the ear drum, so, we may end up having it anyways. Just have to wait and see...thanks again....

~*~Renonda~*~

[Guest guest]

Thanks....Im so glad to hear the positive responses to the tubes!!.This gives me more hope of avoiding any further surgery. Im sorry you still have to deal with the C-toma in the other ear, that is my biggest fear...Good luck to you and your daughter and thanks for the info...take care,

~*~Renonda~*~

[Guest guest]

Hi Ellen,

Welcome to CI Hear. It's nice to have you here.

Thanks for inviting her.

We have a weekly chat on Tuesday nights which is

announced each Monday and Tuesday with a link to go to

for chatting. You can also chat at the Hearing

Exchange on Wednesday nights as they have a CI chat

there each week and many of us are there.

You will also receive e mails daily. Some days are

busier than others but this is a nice group and you

are among friends here.

I'm glad you are progressing with your implant. It

sounds as if you have been working hard because you

are able to notice the improvements and that is

wonderful.

Welcome to CI Hear.

Alice

[Guest guest]

Hi everyone.

I'm from Fredericton,New Brunswick,Canada and have had hearing loss since I

was 3 years old and wore hearing aids till I had my CI a year ago which is

great.Still learning what the sounds are,.I sound like a little kid at a

candy store Ha Ha! Very Happy with my CI!

Re: Hi everyone

> Hi Ellen,

> So nice to have you on ciHear with us. This is a terrific place to

> ask and get answers to any questions you may have as well as finding

> a great network of supportive folks.

> Jump right in with questions, comments or whatever and if you don't

> understand something someone has posted, ask.. we sometimes gat ahead

> of ourselves in posting terms that some people don't yet understand

> and we want to make sure we are understood.

>

> Why don't you tell us a bit about your hearing history and maybe

> where you live.. that's usually a pretty good place to start.

> Once again, So glad to have you here and hope you enjoy your time

> with us.

>

> Cheers

> Silly in MI

> N24C and 3G activated

> Hereditary bilateral progressive nerve deafness

> Volunteer Advocate

>

>

> In , <piglet@n...> wrote:

> > I'm new to this group! told me about this group and I'm

> hoping to learn about CI's Does this group have a chat line or just e-

> mail to each other? Pls let me know as I am interested what you do.I

> got a CI a year ago which I am still learning the words and sounds I

> had not heard before and its great. Hope to hear from you.

> > Ellen

> >

> >

> >

[Guest guest]

Hey neighbour! LOL I'm in Nova Scotia! I've seen you at the Hearing

Exchange, but I didn't realize how close we were geographically! I

haven't run into too many people from our area on the deaf/HOH boards

I've visited.

What kind of CI did you get? Did you get implanted in Halifax? My

son had his surgery done at the IWK. (He's 10 and was just activated

a week ago.)

> Hi everyone.

> I'm from Fredericton,New Brunswick,Canada and have had hearing loss

since I

> was 3 years old and wore hearing aids till I had my CI a year ago

which is

> great.Still learning what the sounds are,.I sound like a little kid

at a

> candy store Ha Ha! Very Happy with my CI!

[Guest guest]

Hi there,I do remember you from the chats at the hearing exchange but did

not know where you were from,small world eh? I got a BTE Clairon CI a year

ago at the VG Hospital.Yes I did get implanted Dec 7/2001,the Dr was Dr

M.Bance.He was very good. It took me awhile to adjust to the CI when I got

acitvated. How is your son doing so far? Does anyone else in your family

have a hearing loss? told me about this CI Hear and its been

iteresting to hear from others experiences with the CI.Hope to catch you

tonight on the Hearing Exchange.

What is your name and where about in NS do you live?

Re: Hi everyone

> Hey neighbour! LOL I'm in Nova Scotia! I've seen you at the Hearing

> Exchange, but I didn't realize how close we were geographically! I

> haven't run into too many people from our area on the deaf/HOH boards

> I've visited.

>

> What kind of CI did you get? Did you get implanted in Halifax? My

> son had his surgery done at the IWK. (He's 10 and was just activated

> a week ago.)

>

>

>

> > Hi everyone.

> > I'm from Fredericton,New Brunswick,Canada and have had hearing loss

> since I

> > was 3 years old and wore hearing aids till I had my CI a year ago

> which is

> > great.Still learning what the sounds are,.I sound like a little kid

> at a

> > candy store Ha Ha! Very Happy with my CI!

>

>

>

>

[Guest guest]

Hi,

My son's doctor would not allow swimming for 6 weeks after. It may depend on the doctor and situation.

nonnykay1 <nonnykay1@...> wrote:

My son is scheduled for a tympanoplasty with possible mastoidectomy,(a month from today), and I was wondering how long after surgery and healing until he is able to swim? With the summer months fast approaching, he is worried that he will not be able to swim or get water in his ears...Any ideas? Thanks...Renonda