Thank You All

[Guest guest]

Thank you all.--

--------- Forwarded Message ---------

DATE: Sun, 28 Nov 1999 21:50:37

From: " Mark & Povinelli " <pezzkitty@...>

hartcrove.tim@...

Tim,

I read your message today. I wish we could help, but this seems to be a

problem that needs professional attention. I would contact a suicide

helpline as soon as possible.

However, if your friend wants someone (female dwarf) to talk to I would be

more than happy to lend an ear. I do not have a psychology background that

is why I suggest getting professional help first.

You are in our thoughts,

--------- End Forwarded Message ---------

Get your FREE Email at http://mailcity.lycos.com

Get your PERSONALIZED START PAGE at http://my.lycos.com

[Guest guest]

Lynn,

I know this response is late, I have been on vacation. My son is 14 with Poly

JRA. He being injected with both Methotrexate and Enbrel. The combination

is working very, very well. The bonus is that he has started to grow. As an

FYI... testing shows that Enbrel works better with Methotrexate then alone.

Also, we haven't noticed any side effects. Please read up on Enbrel and

infections before deciding to use, we skip Enbrel injections with any sign of

sickness or infection. Jana

[Guest guest]

G,

Glad to hear that you're feeling a bit better hon. Make sure you still take it

easy on yourself, and give yourself plenty of rest.

*hugs*

Gwydion Elderwyn wrote:

> Thankyou to everyone who wrote to me in the last week ... I'm doing better

> now, although I have to be careful not to do too much. Which I probably

> will do anyway, I'm such a fidget.

>

> Hope this finds all of you doing better as well.

>

> Love,

> Gwydion

>

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>

[Guest guest]

Dear Casaria, Does Tasie get the Still's rash? You didn't mention this, so

I just wondered. When n got the fevers, nothing would ever bring them

down. Sometimes they would go down on their own before I could even get to

the thermometer. Some kids get the fevers once a day, and some kids get

them twice a day. n would get hers in the evening with the rash.

n still gets the rash, and the severity of the rash is an indicator to

us how she is doing. It can be up to a year after the fevers subside that

the arthritis will set in.

When Tasie complains of her eyes, is it a headache? n gets headaches

with her flares and nothing helps them. A neurologist, Dr. Koch, at OHSU

diagnosed chronic daily fevers. Like, duh--we know that, she has the

headaches 24/7 when she flares.

THe only thing that gets n and most of these kids out of a flare are

steroids. If you are unfamiliar with steroids, they will let your child

feel wonderful usually within 24 hours, but you need to taper slowly off of

them. Steroids have awful side effects, and can be worse than the disease.

They are usually used first along with a medication that can stop the

progression of the disease--but these medications,DMARD's, can take several

months to start to work. Just Motrin alone is not enough to deal with

systemic JRA. Also, bring Tasie to a pediatric opthomalogist. Jra can

attact the eyes with no symptoms. It is rarer with Still's , but still she

should be seen every six months. There is a good one in Portland, Dr Aaby.

Good luck.

>From: Casaria Tuttle <snickers4you_2000@...>

>Reply-

>

>Subject: Thank you all

>Date: Fri, 29 Mar 2002 10:08:30 -0800 (PST)

>

>

>Hello everyone,

>

>I want to thank you all from the bottom of my heart for welcoming us into

>your group so easily. We feel very lucky to have found such an amazing

>group of people. Thank you.

>

>To answer some of the questions about how this is affecting Tasie I will

>try to start from the beginning and make it as short as possible. When

>Tasie was about six months old she started getting some high fevers for no

>reason. She would run at that time 101-103, with no runny nose, no cough,

>no cold or illness symptoms. I was taking her to the dr many times a week

>every week. They said it is just a cold, give her tylenol and she will be

>fine. Well the tylenol brought her fevers down a little bit, but she

>remained ill for usually 3wks. We would have a few days that were good

>then she would go right back into the fevers again. It remained this way

>until she was about 1yr. By that time she was able to start communicating

>what was bothering her. She wasn't having bowl movements regularly, we

>were lucky if we got one every two weeks out of her. That is still going

>on to this day. Dr's said she was constipated and it would pass. Well it

>still hasn't passed and we are relating it to the Still's. She would

>complain about stomache problems, and owies. She wasn't very specific.

>This went on for a long time the same way. Then starting about November of

>last year things progressively got worse and quickly. She was still having

>the fevers, but they were going higher, she would wake in the middle of the

>night screaming owie, and as the fevers go up she screams about her eyes

>hurting her. Her pain complaints are her knees, and her elbows, along with

>the eyes. Now we aren't even getting a few days off between fevers. They

>are a constant now. Her eyes are a constant, and the pains she feels won't

>go away regardless of what we try. Motrin is the med of choice right now

>by the dr's, but it isn't touching her at all. I finally hit my wits end

>with the dr's and broke down in their office when they said she is just

>getting sick a lot, it is normal, she will be fine. After I lost it we

>started with Still's, and guess what, I was right, this is what it is.

>

>No she is not on any kind of medical treatment right now. We go back to

>the dr monday april 1st, and hopefully we can get started with something.

>she keeps getting lung infections after the first week of the fevers. She

>has been hospitalized once for it, that was scary enough for both of us, 4

>days was just to long for her to be going through that. I am going crazy

>at times, because I can't help her. Sometimes the pain gets so bad she

>won't let us touch her, she just curls up in a corner somewhere and crys,

>so we sit by her and try our best to comfort her. It's not enoug but it is

>all we can do.

>

>Yesterday I decided to let her out and play even though she is sick, took

>her to the park for about 15mins, she got flipped by a little girl on a

>swing. Foot to face impact. But she is doing ok from it. I try to treat

>her normally but it is really hard.

>

>I have one question for all of you that have read this far. Has anyone

>ever noticed a problem with their balance (equalibrium)? She is constantly

>falling down, walking into things, she has no balance.

>

>I thank you all for your support and for just being there. Patty and Bob I

>enjoyed the chat last night, you made me feel very welcome, I am looking

>forward to next time.

>

>I wish you all the best and many pain free days,

>

>Casaria & Tasie

>

>

>

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

>

[Guest guest]

,

Thanks, yes we did take her to a pediatric opthamologist at OHSU. Her eyes checked out ok, she is a little nearsighted. We don't know about headaches, she just holds her eyes, especially when there is a lot of light ie: sunlight, she complains, but it can also be in the dark. She still doesn't tell us much. Her verbal skills have decreased since this picked up in November. As for a rash she does get a traveling rash on her body, and when she is having a faver her cheeks one or both looked like she has been slapped. She also gets what the dr's are calling ear infections after day 2 which last about 1-1 1/2days. I am going to contact that rheumy you told me about monday when we go back to Portland. Thanks, and I am sorry if I am still leaving things out of my explanations...there is just so much going on I can't always keep everything straight. I keep a journal of her flares just so I can tell the dr's what is going on and when. Oh, and her fevers get worse at night, but she runs them all day for the full 3wk bout. They do fluxuate between 99.9-103.8.

Casaria

[Guest guest]

Hi Casaria,

Reading the story you shared with us about your little girl really touched my heart. I know I'm not alone in saying how well I can relate. All of us are familiar with the sorts of emotions you are feeling. This condition most certainly affects the entire family, not just the child who has JRA. Our children often manage to smile ... when we feel like crying.

Nearly all of our children start off taking one of the various NSAIDs(non steroidal anti-inflammatory drugs). We went from Children's Tylenol, to Naprosyn, and eventually settled with Indomethacin. My son had just turned 6 when his symptoms began. Like many children with Still's NSAIDs alone, unfortunately, were not strong enough to combat the arthritis. He also needed Prednisone, Methotrexate, and Hydroxychloroquine. With this combination we finally were able to achieve pretty good control of symptoms. Still, this was not a magical formula. My son's arthritis was still active ... but we were able to keep the symptoms more manageable (most days) by maneuvering the dosages with guidance from his pediatric rheumatologists.

The first five years, especially, there were so many ups and downs. It started off with many more bad days than good ones, in terms of my son waking up with morning stiffness that lasted often for hours, having pain in many various joints (and muscles), having limited range of motion, more fatigue, less endurance, twice daily fevers ... up to 107 degrees, and the Still's rash. Looking back, it seemed like one long, continuous, flare that once in a while stopped for a few days. As time went on, though, he started having fewer bad days and more good ones.

On April 5th, Josh will be 13 years old. In May, he'll have had JRA for 7 years. Yeah, he still has arthritis ... but it's just another part of his life. It's no longer the biggest part : ) He's smaller than children his age, because steroids at high doses used for long periods of time have the potential for inhibiting growth. He still has to take a bunch of meds daily and visit the doctor more often than other kids but he's adjusted really well to doing whatever it takes. He (and I) have learned how to deal with it. It does help knowing that you're not alone, that others have gone down this same path before and successfully overcome. Hopefully you'll be encouraged by hearing others' stories, strategies for making things easier, helpful advice from people who know lots about this JRA stuff from personal experience : )

Good luck at Tasie's next appointment. Please let us know how it goes, okay?

Aloha,

Georgina

I want to thank you all from the bottom of my heart for welcoming us into your group so easily. We feel very lucky to have found such an amazing group of people. Thank you.

To answer some of the questions about how this is affecting Tasie I will try to start from the beginning and make it as short as possible. When Tasie was about six months old she started getting some high fevers for no reason. She would run at that time 101-103, with no runny nose, no cough, no cold or illness symptoms. I was taking her to the dr many times a week every week. They said it is just a cold, give her tylenol and she will be fine. Well the tylenol brought her fevers down a little bit, but she remained ill for usually 3wks. We would have a few days that were good then she would go right back into the fevers again. It remained this way until she was about 1yr. By that time she was able to start communicating what was bothering her. She wasn't having bowl movements regularly, we were lucky if we got one every two weeks out of her. That is still going on to this day. Dr's said she was constipated and it would pass. Well it still hasn't passed and we are relating it to the Still's. She would complain about stomache problems, and owies. She wasn't very specific. This went on for a long time the same way. Then starting about November of last year things progressively got worse and quickly. She was still having the fevers, but they were going higher, she would wake in the middle of the night screaming owie, and as the fevers go up she screams about her eyes hurting her. Her pain complaints are her knees, and her elbows, along with the eyes. Now we aren't even getting a few days off between fevers. They are a constant now. Her eyes are a constant, and the pains she feels won't go away regardless of what we try. Motrin is the med of choice right now by the dr's, but it isn't touching her at all. I finally hit my wits end with the dr's and broke down in their office when they said she is just getting sick a lot, it is normal, she will be fine. After I lost it we started with Still's, and guess what, I was right, this is what it is.

No she is not on any kind of medical treatment right now. We go back to the dr monday april 1st, and hopefully we can get started with something. she keeps getting lung infections after the first week of the fevers. She has been hospitalized once for it, that was scary enough for both of us, 4 days was just to long for her to be going through that. I am going crazy at times, because I can't help her. Sometimes the pain gets so bad she won't let us touch her, she just curls up in a corner somewhere and crys, so we sit by her and try our best to comfort her. It's not enoug but it is all we can do.

Yesterday I decided to let her out and play even though she is sick, took her to the park for about 15mins, she got flipped by a little girl on a swing. Foot to face impact. But she is doing ok from it. I try to treat her normally but it is really hard.

I have one question for all of you that have read this far. Has anyone ever noticed a problem with their balance (equalibrium)? She is constantly falling down, walking into things, she has no balance.

I thank you all for your support and for just being there. Patty and Bob I enjoyed the chat last night, you made me feel very welcome, I am looking forward to next time.

I wish you all the best and many pain free days,

Casaria & Tasie

[Guest guest]

Georgina,

Thanks, it does help to know we are not alone.

Although my heart goes out to everyone dealing with

this. Thanks!

To everyone:

Thanks for responding about my most recent question.

The other night was quite scary, but we made it

through. Thank goodness. She is doing pretty good

today, except for being a little out of it. It was

good to hear that everyone that responded back about

the " rash " had the same symptoms. Hopefully that is

all it was. This is the first thing I am going to

tell the dr tomorrow when we get there.

Sometimes this is so much and I get so scared. I am a

single parent and living back at home with my family,

which is so much help. But we all get scared when

things like this happen. We all send big hugs and

love to you for being here and being such a great

support.

Love you all,

Casaria and Tasie

__________________________________________________

[Guest guest]

Hi All! I hope everyone is doing well. I want to

thank you all so much for your loving support. It was

so reassuring and so helpful to get your feedback. It

truly did get me threw the day yesterday. I don't know

what I would do without you all! I would be a mess

and I think I would have lost my mind What little

of it I have left

I had an apt. with my pain management doctor yesterday

who I just adore. Yesterday, I had decided after

speaking with a couple of my fellow stilligans and

reading your replies that I want to continue to see

Dr. Cush for my treatment plan...all I have to do is

find a doctor that doesn't mind writing the scripts

and following my bloodwork. I would see Dr. Cush

every 6 months for an update. My current PCP whom I

LOVE does not feel comfortable writing scripts and

really wanted me to have a local Rheumy. However, I

think an Internal Medicine doctor would be more

comfortable doing it. The only problem is that 1) I

don't know any Internal Medicine Doctors and 2) I will

be very sad to leave Dr. Murray who has been so very

good to me. BUT I know I have to think of my health

and my family and what is the best thing for all of

us. I'm not very good at that. I don't want to hurt

people's feelings and so on... Anyway, as I was

getting ready for my apt. with my pain management

doctor it dawned on me that his wife is an Internal

Medicine doctor. OH OH OH! I was very excited. So,

I spoke with him and naturally he doesn't want to

speak for his wife but he seemed to think that she

would work with me and Dr. Cush. I put in a call to

her this morning and am waiting to hear back from her

to see what she has to say.

I really hope it all works out. If it works out this

smoothly then I know it was meant to be...if I hit a

bunch of bumps in the road then I think there is

something else that I should look into...don't know

yet.

Love and Thanks to you all...many hugs, Kim

__________________________________________________

[Guest guest]

Kim; amazing how what is often right in front of us is the hardest to see until

just the right moment. Good luck and thank you for such a wonderful visit

yesterday. Best wishes for continued good news, Patty

Re: Thank You All

Hi All! I hope everyone is doing well. I want to

thank you all so much for your loving support. It was

so reassuring and so helpful to get your feedback. It

truly did get me threw the day yesterday. I don't know

what I would do without you all! I would be a mess

and I think I would have lost my mind What little

of it I have left

I had an apt. with my pain management doctor yesterday

who I just adore. Yesterday, I had decided after

speaking with a couple of my fellow stilligans and

reading your replies that I want to continue to see

Dr. Cush for my treatment plan...all I have to do is

find a doctor that doesn't mind writing the scripts

and following my bloodwork. I would see Dr. Cush

every 6 months for an update. My current PCP whom I

LOVE does not feel comfortable writing scripts and

really wanted me to have a local Rheumy. However, I

think an Internal Medicine doctor would be more

comfortable doing it. The only problem is that 1) I

don't know any Internal Medicine Doctors and 2) I will

be very sad to leave Dr. Murray who has been so very

good to me. BUT I know I have to think of my health

and my family and what is the best thing for all of

us. I'm not very good at that. I don't want to hurt

people's feelings and so on... Anyway, as I was

getting ready for my apt. with my pain management

doctor it dawned on me that his wife is an Internal

Medicine doctor. OH OH OH! I was very excited. So,

I spoke with him and naturally he doesn't want to

speak for his wife but he seemed to think that she

would work with me and Dr. Cush. I put in a call to

her this morning and am waiting to hear back from her

to see what she has to say.

I really hope it all works out. If it works out this

smoothly then I know it was meant to be...if I hit a

bunch of bumps in the road then I think there is

something else that I should look into...don't know

yet.

Love and Thanks to you all...many hugs, Kim

__________________________________________________

[Guest guest]

Thank you Patty, for taking the time to call me

yesterday and give me all of that wonderful and much

needed advise! I was so upset that I couldn't think

straight and you really helped me put things in

perspective and come up with a great plan. I heard

back from the Internal Medicine doctor's office. She

is going to call me over the weekend and we'll discuss

it then. I don't want to set up an apt. with her and

waste her time and mine if she isn't willing to work

with Dr. Cush. I think she will. Oh, you were right I

had a fever within a half hour of when you said it was

up to 103. I soon began to sweat it off though and it

was down to 101 by the time I got to Dr. Lander's

office but I was dripping sweat. He was like

wow...you're a mess and handed me a towel. I was

soaked with sweat. I had the AC cranked the whole way

too. Oh-well I better get going I'm getting tired.

Have a great day! I'm off to nap.

Love and Hugs, Kim

--- PB <pattymelt@...> wrote:

> Kim; amazing how what is often right in front of us

> is the hardest to see until just the right moment.

> Good luck and thank you for such a wonderful visit

> yesterday. Best wishes for continued good news,

> Patty

> Re: Thank You All

>

>

> Hi All! I hope everyone is doing well. I want to

> thank you all so much for your loving support. It

> was

> so reassuring and so helpful to get your feedback.

> It

> truly did get me threw the day yesterday. I don't

> know

> what I would do without you all! I would be a

> mess

> and I think I would have lost my mind What

> little

> of it I have left

>

> I had an apt. with my pain management doctor

> yesterday

> who I just adore. Yesterday, I had decided after

> speaking with a couple of my fellow stilligans and

> reading your replies that I want to continue to

> see

> Dr. Cush for my treatment plan...all I have to do

> is

> find a doctor that doesn't mind writing the

> scripts

> and following my bloodwork. I would see Dr. Cush

> every 6 months for an update. My current PCP whom

> I

> LOVE does not feel comfortable writing scripts and

> really wanted me to have a local Rheumy. However,

> I

> think an Internal Medicine doctor would be more

> comfortable doing it. The only problem is that 1)

> I

> don't know any Internal Medicine Doctors and 2) I

> will

> be very sad to leave Dr. Murray who has been so

> very

> good to me. BUT I know I have to think of my

> health

> and my family and what is the best thing for all

> of

> us. I'm not very good at that. I don't want to

> hurt

> people's feelings and so on... Anyway, as I was

> getting ready for my apt. with my pain management

> doctor it dawned on me that his wife is an

> Internal

> Medicine doctor. OH OH OH! I was very excited.

> So,

> I spoke with him and naturally he doesn't want to

> speak for his wife but he seemed to think that she

> would work with me and Dr. Cush. I put in a call

> to

> her this morning and am waiting to hear back from

> her

> to see what she has to say.

>

> I really hope it all works out. If it works out

> this

> smoothly then I know it was meant to be...if I hit

> a

> bunch of bumps in the road then I think there is

> something else that I should look into...don't

> know

> yet.

>

> Love and Thanks to you all...many hugs, Kim

>

> __________________________________________________

>

[Guest guest]

Just wanted to thank you all for all your help over the last week or so with my

many questions. I am taking the test tomorrow morning and you have all boosted

my confidence. Thank you so much Jeanetta with all the tutorials and help. I

tend to stress out and confuse my self when I really do know what I am doing.

. The tutorials are great. I have them printed out and will be keeping the

copies for later notes. I have a girl at work who will be taking the national

later and will refer her to this site. Thank you all SO much

Anita

mcorbus@...

[Guest guest]

Dearest Anita,

Well my bad! First of all I have been refering to you as " Mike "

because I always saw mcorbus. Is it possible that both you and Mike

are taking the exam?

Secondly you are most welcome for the Tutorials and I am so very glad

that you found them useful and relevant. I would be most interested

in knowing what other tutorials you think that I need to develop.

Please contact me personally on this one.

I really needed that 'thank you' as most of the postings of late have

nothting to do with the actual study group for PTCB. But I do

encourage this type of disucssion as it is a 'study' of sorts. Any

way I felt that the purpose of the study group may have been a bit

overshadowed lately. But apparently that is just me worrying about

you exam takers. (for those of you involved in the recent posts of

OBRA Continue on! no problem!). Also because the Tutorials

are 'hidden' in the files section, it may appear as if I do nothing

on this site! And so I was not sure if people will wonder " hey where

the heck is Jeanetta " " Where's the study group? " ! I would not blame

them! On the old Delphi the answers were in the threads and veru

apparent. But here we have a bit of a problem with showing the math

inthe actual repy or threads due to distortion of diagrams and set-

ups! Traditionally math has been the number one topic for

discussion. So to view " just the threads " of this study group since

it opened would appear as if there was not much of a study unless one

really looked at the Files and Tutorials in them.

So I am very appreciative of your mention of them. There are plans

for more. I would like some input, so feel free.

Please pass the word to other tech sites in the future as to how much

the study group has helped you.

Thank you so much for being a part of the July 27,PTCB Study Group!

and for making the launch of this site a success!

Respectfully,

Jeanetta Mastron CPhT BS Chemistry

Pharmacy Program Director/Educator

Jeanetta's PTCB Study Group! Founder/Owner

In @y..., " Mike & Anita Corbus "

<mcorbus@m...> wrote:

> Just wanted to thank you all for all your help over the last week

or so with my many questions. I am taking the test tomorrow morning

and you have all boosted my confidence. Thank you so much Jeanetta

with all the tutorials and help. I tend to stress out and confuse my

self when I really do know what I am doing. . The tutorials are

great. I have them printed out and will be keeping the copies for

later notes. I have a girl at work who will be taking the national

later and will refer her to this site. Thank you all SO much

> Anita

> mcorbus@m...

>

>

>

[Guest guest]

I started keeping a list and was going to thank everyone who responded but you guys as usual all stepped up to support me. I'm doing OK today. I have contacted the Cleveland Clinic and my daughter has researched top transplant Hospitals in my area and Cleveland is #2. I feel much better having taken an aggressive role in getting on with this fight.

I still have my down moments. I just wrote a note to my daughter and cautioned her to think long and hard about the live donor thing. Through many tears I told her how proud I am of her and what she has accomplished. I just don't know if I'm ready for her to be the donor or not, but I told her the fact that she offered is the most selfless act that anyone could perform. I told her to think about the "whole family." She is recently married and I'm a single Mom who still has an 18 year old son starting college this fall. I feel she needs to be there for him and cautioned her to think about the big picture.

I know that when the time comes a liver will be there. I have to listen to my sister and realize that this thing is bigger than I am. I must believe in a power that's bigger than me. This may be God, this may be the doctors, this may be the man in the moon but I can't do it alone. As long as I am a part of this group I know that I am not alone. Without you guy's I would be lost. Thank you so much for being here.

Nothing will happen right away, as it sounds like Amy and I are in a similar situation. At times you almost feel guilty for even being considered for the transplant as on a good day you don't do too bad, but on a bad day you realize that maybe that's where you really need to be.

The emotional roller coaster is crazy, but I will have to get use to this too. This is going to be a long haul. I refuse to give up and as I told my daughter, I'll fight the fight as long as it takes, as I know a liver will be there when it is needed.

Again, Thank you all for you concern and well wishes. I'll let you know how things progress.

Hanging in here in Virginia.

[Guest guest]

When my husband found out he needed a liver my son was the 1st person to ask if he could donate...As a Mom i was worried about both of them but they was no swaying his decision..final answer. Its great when you raise kids willing to do this for you. Unfortunately, my husband needs the complete liver so that was ruled out but if he could have donated he would have and we met 2 sisters that one donated 1/2 and they looked marvelous. Both in great health now.

[Guest guest]

Dian I asked this before and never got an answer.... why is it that

your husband needs a complete liver ?

love jerry

[Guest guest]

,

Sounds like you have a wonderfully supportive family and faith the system will work for you when you need it.

I get daily emails from my two sisters and my mother calls or I call her every other day. I think it is hardest on her, she is 75 and wants to help but there is nothing she can do. I'd rather have my sister's here than her. She's at an age where she is more needy than helpful. I have better visits with her when I am recovering, she loves to take walks. She has offered me her liver twice, she's so sweet. During the wait there's really nothing anyone can do except be supportive.

I think you put it well when you said 'this is bigger than us'. It is. There is no way I thought I would still be waiting her, August 1st. It was January when Dr. Tzakis told me I would need a second transplant, March when I went on the list and here I still am waiting. It is a long haul.

, you and Marty seem both to be taking this in stride, as much as you can. Hang in there, things will happen as they will.

Patty

-----Original Message-----From: MKANTZLE@... [mailto:MKANTZLE@...] Sent: Thursday, July 31, 2003 11:15 PM Subject: Re: [ ] Thank you allI started keeping a list and was going to thank everyone who responded but you guys as usual all stepped up to support me. I'm doing OK today. I have contacted the Cleveland Clinic and my daughter has researched top transplant Hospitals in my area and Cleveland is #2. I feel much better having taken an aggressive role in getting on with this fight.I still have my down moments. I just wrote a note to my daughter and cautioned her to think long and hard about the live donor thing. Through many tears I told her how proud I am of her and what she has accomplished. I just don't know if I'm ready for her to be the donor or not, but I told her the fact that she offered is the most selfless act that anyone could perform. I told her to think about the "whole family." She is recently married and I'm a single Mom who still has an 18 year old son starting college this fall. I feel she needs to be there for him and cautioned her to think about the big picture. I know that when the time comes a liver will be there. I have to listen to my sister and realize that this thing is bigger than I am. I must believe in a power that's bigger than me. This may be God, this may be the doctors, this may be the man in the moon but I can't do it alone. As long as I am a part of this group I know that I am not alone. Without you guy's I would be lost. Thank you so much for being here. Nothing will happen right away, as it sounds like Amy and I are in a similar situation. At times you almost feel guilty for even being considered for the transplant as on a good day you don't do too bad, but on a bad day you realize that maybe that's where you really need to be. The emotional roller coaster is crazy, but I will have to get use to this too. This is going to be a long haul. I refuse to give up and as I told my daughter, I'll fight the fight as long as it takes, as I know a liver will be there when it is needed. Again, Thank you all for you concern and well wishes. I'll let you know how things progress. Hanging in here in Virginia.

[Guest guest]

Hi Donna

I really feel for you having to make all these decisions in such a short amount

of time. How bad is you liver? What did your last biopsy show? If you've said

it before, welllll you know about brain fog....fogging up here. Until I know

that, I can't make an informed opinion for you...which, remember, would only be

my opinion. Hang in sweetie and get back to us ok?

Hugggs

Carol

Thank You All

Hi Everyone,

I want to thank Gene, Micky Willem, Carol and the Dr. for your quick replies,

advise and well wishes.

My boyfriend and son were here from Norway for Christmas so I tried not to

think about it all much. The only ones I have told are you all.

The Dr. treating me had thought I had beat the dragon too but ... he

mentioned to me about getting on a clinical trial.

The clinical trial director called yesterday about a trial doing the exact

same treatment I had taken for 48 weeks Sherling-Plough peglated interferon

alpha 2b and ribavirin on a weight based dose. If after 12 weeks I clear the

virus I would continue for a year. If I didn't clear I would or would not

continue

on a low dose interferon for 3 years I believe is what she said. Since it is

a study I guess some get the small dose and some don't.

The Dr. will call back Wednesday after hearing from the clinical director

about what trial study she found I was eligible for.

I am confused and curious about my options.

What treatment would a Dr. prescribe for me to take outside of the clinical

trial?

How long will my liver last without treatment?

How would my body take treatment again?

How could I support myself without working on treatment?

Which is the better alternative for my family? Put my 12 year old through

another year of me on treatment or just let it go and continue on living a

normal life like we are now.

Mickey you have made it..you will feel so much better once off treatment. It

is just around the corner.

Gene, how is your salon business going?

Updates on everyone will be nice to hear.

Your Friend Donna who wishes she didn't have to make any decisions right now.

[Guest guest]

Donna-

I am really sorry to read of the bad news. It is a real big let-down to go

through treatment and then relapse. A doctor could prescribe Roche's

pegylated interferon-which is different than Schering's plus Ribavirin.

Also, Amgen is working on a pegylated version of Infergen-which is a real

ass kicker-but actually, the original non-pegylated Infergen at this time is

the only 'FDA approved' treatement for relapsers. I don't know what shape

your liver is in, but the time on treatment will have allowed it to heal a

bit. Your reaction to a second round of treatment will depend on what

treatment you get, dosage, which interferon you take, etc. My belief is

that any treatment after relapsing must be stronger than the original

treatment or it will not work. It doesn't sound like the trial you

mentioned here will be effective. Again, I am sorry to hear of your

relapse. My guess would be to give yourself some time to let things sink in

before making a decision about re-treatment.

gail

Thank You All

Hi Everyone,

I want to thank Gene, Micky Willem, Carol and the Dr. for your quick

replies,

advise and well wishes.

My boyfriend and son were here from Norway for Christmas so I tried not to

think about it all much. The only ones I have told are you all.

The Dr. treating me had thought I had beat the dragon too but ... he

mentioned to me about getting on a clinical trial.

The clinical trial director called yesterday about a trial doing the exact

same treatment I had taken for 48 weeks Sherling-Plough peglated interferon

alpha 2b and ribavirin on a weight based dose. If after 12 weeks I clear the

virus I would continue for a year. If I didn't clear I would or would not

continue

on a low dose interferon for 3 years I believe is what she said. Since it is

a study I guess some get the small dose and some don't.

The Dr. will call back Wednesday after hearing from the clinical director

about what trial study she found I was eligible for.

I am confused and curious about my options.

What treatment would a Dr. prescribe for me to take outside of the clinical

trial?

How long will my liver last without treatment?

How would my body take treatment again?

How could I support myself without working on treatment?

Which is the better alternative for my family? Put my 12 year old through

another year of me on treatment or just let it go and continue on living a

normal life like we are now.

Mickey you have made it..you will feel so much better once off treatment. It

is just around the corner.

Gene, how is your salon business going?

Updates on everyone will be nice to hear.

Your Friend Donna who wishes she didn't have to make any decisions right

now.

[Guest guest]

Hi Donna,

I failed Interferon twice, and then combo with Ribavirin. I'm 1a and am

hopeful about some of the therapies that attack the virus rather than stimulate

the

immune system. I suppose that will be 2007 or 2008. In the meantime, I'm

eating well, resting well, keeping the stress at a minimum, and am abstaining

completely from alcohol.

I'll bet the treatment has helped you some. I wouldn't be afraid of trying it

again.

Yes, our salon is doing well. Just finished our 15th year in the same spot.

Are you doing manicures?

Good to hear from you.

Gene

[Guest guest]

> I want to say THANK YOU to all that have replied to my post. It

> really means a lot to know that there are people around the country

> that have been where I am with my son now, and take time out of

> their days to help other people with this disease. I am in the

> process today of trying to get the referral for a second opinion.

I

> will keep everyone posted on how it goes. Everyone that replied

> confirmed what I was thinking. God Bless each and every one of

> you. Thank you again for you thoughts, prayers, and advice.

>

> Very Sincerely

> Carla in Kentucky

Hi there Carla

We are in Tennessee and my daughter just had her surgery last

Thursday. We went to Knoxville Tn. Dr. Merwin was great with Kalene

(9yrs old). He took the time to talk to her and explained things so

we all understood. I don't know if that would be close for you or

not. If you would like more info let me know. I hope all goes well

with your son and family.

Beccri

[Guest guest]

Patty,

Welcome back!

Im sorry to hear that Kaelieghs last ortho wasnt informing you the way he should have been. Its great to hear that you are moving on...

Please consider making an appt. w/ the Shriners in Erie, PA. Dr. is currently applying casts early to progressive non structural cases.

Thanks for the post...Its so important (in the big scheme of things) to collect all of your childs films, mri's, etc. Not only does it prevent your baby from having to undergo unnecassary tests, x-rays, but it allows you (the family) to have access to your own childs info at all times...and thats important.

Also, appt.s can made a lot faster when the doc has your babes info right in front of him.

Thanks Patty.

Sincerely,

HRH

[Guest guest]

I second that. We aren't out of the woods yet, but things don't seem to be as urgent.

Thank You All

I would like to thank all of you for keeping and I in your thoughts during the Volcano alert. It meant alot to me to read the posts hoping we were going to be ok.Hugs,Rose~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi Rose,

How close are you to Mt. St. Helen's??? You be careful and Don't let your guard down...

((( Protecting Hugs )))

Helen

I would like to thank all of you for keeping and I in your thoughts during the Volcano alert. It meant alot to me to read the posts hoping we were going to be ok.Hugs,Rose

[Guest guest]

,

I am glad that you are being blessed this holiday season.

Donna

>From: " monica03032002 " <LManzano@...>

>Reply-

>

>Subject: Thank you all

>Date: Thu, 18 Nov 2004 14:54:50 -0000

>

>

>

>

>These links will keep me busy. We have been adopted of Turkey day,

>a family is bringing us a turkey. Got this help through united way,

>or rather arc of cap. area. living in the moment. monica

>

>

>

>

>

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

>-subscribe

>-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on this

>group is qualified to diagnose medical conditions. If you feel you need

>medical attention, seek the advice of a qualified physician.

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hi Ang,

So you son was sick, I was worried about that. A sinus infection in a little guy only 3 must have felt really bad for him, and maybe was in his ears too. Hopefully the antibiotic will clear things up for him right away and hopefully he will sleep better now too. Let us know how he does, and how you are doing too.

I know how hard it can be with little ones with problems. Mine is 40 years old now, when he was 3 they were just starting to try and figure out what was wrong with him, giving all sorts of drugs for his seizures, and he got really bad from them. Sometimes I wonder how he would have turned out if they would not have tortured him with those drugs. 45 mg. of Valium a day for a 3 year old was insane, but I got him off of it. Nutty doctors!

By the grace of God we are still here!

Love,

Carolyn

Thank you all

Who have sent ideas... We took him to Children's Mercy in KC today, and..

He has a sinus infection. It's been going on for a month, and he's even been in the ER and we've been told by his ped and the ER dr both that it was a cold and go home. The Dr in the Peds Care Clinic immediately said sinus and gave him an antibiotic and Miralax to help with his constant constipation.

As for sleeping meds, he's tried benedryl, vistaril, clonadine, melatonin, and St. 's in various dosages and combinations. None work. St. 's helps during the day...the rest seem to do the opposite.

He still needs to go to the dentist...he won't let us in his mouth to brush his teeth....just trying to locate a dentist who will sedate him immediately is a fun job that is not easy to do...

Thank you all for the suggestions...

Ang

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