Rough Day

[Guest guest]

,

Sorry to hear Kelsey is having a rough week. I know as a parent it

does break our hearts to see our children suffer and there is nothing we can

do to take the pain away. We wish it could be us instead of them. What you

wrote about Motrin and Naprosyn got to me . About a month ago we gave

her Indocin and four hours later the fever was still way up there.

Well we gave her Motrin then, and the fever broke in an hour, but she had

some real bad side effects. She got really dizzy and kept asking where she

was and that she was very scared of the way she was feeling. Every time she

fell asleep she would wake up and jump out of bed very scared, she had

nightmares to.It lasted about three hours and scared me to death. I kept

telling my husband something is wrong. Well he called the doctor (2am)and

she said it was a reaction to the Motrin and Indocin mixed together in her

body. And she could not handle it. Well we will never give that combonation

together again. So please ask your Doctor about giving Naprosyn and Motrin

on the same days before doing it. I give tylenol when her fever gets past

101.00. Hope this helps a little. Budd

>From: imshellrenee@...

>Reply- egroups

> egroups

>Subject: Rough day

>Date: Tue, 6 Jun 2000 16:19:40 EDT

>

>Hi Everyone,

>Kelsey has had a rough to start to this week. Yesterday her knees and

>fingers were sore and swollen. Her ankles, wrists, and toes didn't seem to

>bother her though. We have had to use Tylenol in between her Naprosyn,

>which

>isn't really doing much good. The weather here has been cool and rainy for

>the past few days, maybe that has something to do with it. She didn't

>sleep

>well at all last night and she was even talking to me about not feeling

>well.

> She's 3 years old and can barely even say the word arthritis, but last

>night

>she said " mommy, my fingers hurt... this arthritis is mean for hurting me " .

>That broke my heart!!! She has made a lot of progress, but for two days

>now

>she hasn't been feeling as good. Could it have something to do with the

>weather? Or could it be a flare starting? I think I will call the doctor

>tomorrow and let her know what's going on... she had mentioned to me that

>there is another medicine she could add in some Motrin along with her

>Naprosyn, should I ask about that or request something else, if anything?

>I

>hope tomorrow will be a better day...

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

,

When Kelsey's doctor mentioned we could add in a dose of Motrin I was

wondering if I heard correctly. I thought that since Naprosyn and Motrin

both are NSAIDS they shouldn't be mixed... and after hearing the reports of

Tylenol and Motrin mixed together, I hate to give her anything else with the

Naprosyn. The doctor did say we could use Tylenol though, and when she

really needs it I give her some. I'm going to give it a couple of days and

see what happens, and if she is no better, or worse, I am going to go ahead

and call the doctor. I am hoping she will rest better tonight and tomorrow

will be a better day.

Thanks for the advice,

[Guest guest]

Dear , In my experience with my 11 year old daughter, I haven't

seen too much correlation with weather and pain. When n is flaring

the NSAIDS really don't touch the pain. At first n started on

naprosyn, but when the fever came back with more arthritis then we moved up

to plaquenil. n's arthritis has always seemed to move around. We

never knew how n would feel until we woke her up in the morning, and

then a different joint everyday might hurt. Good luck.

Rough day

>Hi Everyone,

>Kelsey has had a rough to start to this week. Yesterday her knees and

>fingers were sore and swollen. Her ankles, wrists, and toes didn't seem to

>bother her though. We have had to use Tylenol in between her Naprosyn,

which

>isn't really doing much good. The weather here has been cool and rainy for

>the past few days, maybe that has something to do with it. She didn't

sleep

>well at all last night and she was even talking to me about not feeling

well.

> She's 3 years old and can barely even say the word arthritis, but last

night

>she said " mommy, my fingers hurt... this arthritis is mean for hurting me " .

>That broke my heart!!! She has made a lot of progress, but for two days

now

>she hasn't been feeling as good. Could it have something to do with the

>weather? Or could it be a flare starting? I think I will call the doctor

>tomorrow and let her know what's going on... she had mentioned to me that

>there is another medicine she could add in some Motrin along with her

>Naprosyn, should I ask about that or request something else, if anything?

I

>hope tomorrow will be a better day...

>

>

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

>Old school buds here:

>1/4057/2/_/524922/_/960322795/

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

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

- I'm sorry to hear that Kelsey isn't feeling well. I was actually

relieved when macey started verbalizing her pain. Doctor visits start out

now with her telling the doctor her version of how she's been feeling and me

filling in the gaps. The other night macey was lying in bed around midnight

with knee pain and I thought I was saying something comforting such as

" honey, maybe it'll feel better in the morning " . She looked me dead in the

eye and said " yeah, maybe it will....but maybe it won't " . ohhh the

heartache. Today in PT she started moist heat on her knees. Macey didn't

care for the feeling of the heat but enjoyed some benefit afterwards. I

hope the doctor has some suggestions and she's feeling better soon.

Ursula Holleman

Macey and 's mom

http://home.att.net/~maceyh

[Guest guest]

Hi all

I'm back, the last time I wrote I thought we were over the " hump " ! Just

goes to show you what a horrible, sneaky disease this is. We've been

monitoring on celebrex for three months........ She was right as rain

for about two months and then winter hit us and she has swollen ankles,

swollen wrists and a sore neck. I have a feeling it may be the change in

the weather in addition to the arthritis, but I'm not sure. Anyway, the

celebrex obviously wasn't working any more so she is now on Indocid - 25mg 3

x per day - has anyone had experience with this one?

I must say that in the last three months or so since she's gotten worse I

have been really negative about everything. There is nothing as frustrating

as not being able to help her and I feel so sad for her. She's also taken

quite a lot of teasing at school and it takes a lot of time and effort to

work through all of it. In the past I have seen people say here that they

really hate this disease, and now I really know how they feel. She's up to

four methatrexate a week now, and I guess I'm just feeling really

discouraged about all of it.

She won't do the diet thing even if I promise I'll do it with her!! I dunno

- I can't say I'd be very happy as a seven year old not being able to eat

the same things as her friends. Anyway, I'm about to venture into the world

of reflexology - has anyone had experience with oils - and if so - what kind

are the best? She's also back at physiotherapy, and I'm trying to get

positive about it again which can be an uphill go....... Anybody have some

wise advice to give to me about keeping positive and staying positive? I am

sure my being negative also has an impact on her?????

Anyway - It's nice to see so many new people here!

Ady Ogilvie

aogilvie@...

> Rough day

>

>

> >Hi Everyone,

> >Kelsey has had a rough to start to this week. Yesterday her knees and

> >fingers were sore and swollen. Her ankles, wrists, and toes didn't seem

> to

> >bother her though. We have had to use Tylenol in between her Naprosyn,

> which

> >isn't really doing much good. The weather here has been cool and rainy

> for

> >the past few days, maybe that has something to do with it. She didn't

> sleep

> >well at all last night and she was even talking to me about not feeling

> well.

> > She's 3 years old and can barely even say the word arthritis, but last

> night

> >she said " mommy, my fingers hurt... this arthritis is mean for hurting

> me " .

> >That broke my heart!!! She has made a lot of progress, but for two days

> now

> >she hasn't been feeling as good. Could it have something to do with the

> >weather? Or could it be a flare starting? I think I will call the

> doctor

> >tomorrow and let her know what's going on... she had mentioned to me that

> >there is another medicine she could add in some Motrin along with her

> >Naprosyn, should I ask about that or request something else, if

> anything?

> I

> >hope tomorrow will be a better day...

> >

> >

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

> >Old school buds here:

> > <1/4057/2/_/524922/_/960322795/>

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

> >

> >For links to websites with JRA info visit:

> > <http://www.geocities.com/Heartland/Village/8414/Links.html>

> >

> >

>

>

> _____

>

> Get dot com essentials now!

> <1/4774/2/_/524922/_/960323123/http://www.network

> solutions.com/cgi-bin/promo/landing?code=P11C99S1N0B2A3V1> Type your

> search here:

> www. .com

> <http://adimg./img/4774/2/_/524922/_/960323123/1x1.gif>

> _____

>

> For links to websites with JRA info visit:

> <http://www.geocities.com/Heartland/Village/8414/Links.html>

>

[Guest guest]

((((((((((((cortnee)))))))))))))) my thoughts and prayers are with you. We seem

to have very similar lives and I think I can honestly say, I know what you are

feeling. I am only 28. I also have RA, carpal tunnel palsy, loose joint syndrome

and a compromised immune system because of " cat scratch fever " I had numerous

lymph glands removed and many other conditions, some major some minor. Pain can

be unbearable when it doesn't ever go away. I also have endured the abuse, too

much to even talk about it, and most I don't talk about anyway and sometimes I

do say, what did I do? what have I done? I don't deserve this, I really don't.

and neither do you. But we have it and we are stronger for it and I do truly

believe I go through so many things because I CAN handle it. Not everyone can

handle what we've gone through and what we go through. I'm proud of you that

you've come so far. Surviving abuse is a major accomplishment in itself and I'm

proud of you for that. I hope for you that tomorrow

is a better day and maybe god will bless you with a great day. You deserve

that, everyone does. take care.

kerri sue

Cortnee <cortnee_30@...> wrote:

Well im up and out early this morning. Trevor and I were leaving the

house at 6:40am to go to my Dr's appt. Its close to downtown Dallas

and with traffic you better leave early. So we head out Im trying

really hard not to freak out cause I hate traffic. We get there safe

and sound. Luckily.

Dr. Z comes in and looks me over. I had to do a stat blood test and

Urine sample test. Turns out that i have another Bladder Infection.

Which means no chemo and no Humria. I just about cried. I dont know

how I can go on through the rest of my life in such pain. Im not

deforming yet, which is a blessing, but he seems really concerned.

He kept commenting on my swelling and feeling my joints. I know when

hes worried he has this look. Cause normally hes all smiles. He

said that I have to take the antibioitcs for 3 days and then on Sunay

I can start the Chemo and Monday I am to call them because after

looking me over real good. He checked my hips and I about came up

off the table and I yelled out. That really hurt. He said I have

brisitis in both of my hips and I have to try these pads that heat up

for 8 hours and then these ben gay pads, if that doesnt work I am to

call him and get a RX for a patch that might be better/stronger to

releive the pain. If all of those do work I may have to have hip

injections in both hips.

So Im sitting there listening to all of this and i start crying. Hes

said its gonna be ok. I said its not that. I am only 31 Dr Z and

when I think about a future filled with pain it breaks my heart. He

said Cortnee, It will get better. I said I hope so. I dont know how

much more I can do this. I held out for today because I thought I

was going to get my medicine, I never though I would look forward to

giving myself a shot or the chemo so badly. I worry about my quality

of life and if I will be able to walk or right or type. I have these

things on my feet that may or may not be nodules from the RA, he

keeps an eye on them too. His face today though, scared me, I know

he was trying hard not to show it because I was so fragile. I know

he doesnt like the idea of the injections and I can magine hes

thinking to himself, damn, I wanted to save her from that pain. See

I know what its like to get those injections. They are not fun. I

have had several in my wrists.

I sit and wonder why do I have to go through so much. All of my past

and my medical problems. Am I being punished for my wrong doings.

Like I said Im only 31 and I have been though abuse, physical and

mental, rape, abortion, losing people, watching death unfold. Ive

had neck surgery where I had a double fusion, ive had carpal tunnel

release in both hands. Whats next. I cant imagine needing a hip

replacement at 31, but at this point its possible. He said that I

may have to have some scans and tests if it continues, I was afraid

to ask what my future holds. I know he doesnt KNOW for sure, but I

can tell he has an idea, but he didnt discuss it with me.

have tried so hard not to feel sorry for myself. I know there are

so many others out there in more pain and or dying. Im not dying,

but the pain is so unbelieveably bad at times. It takes all i have

jus tto sit up and move over to my chair in the mornings. My

emotions are running wild and im quite terrified. I dont want to

live my life in pain. For lack of better statements...Its not

fair....Its not.

OK Ok, im done, i needed to vent!!!!

Cortnee

[Guest guest]

Good job!, vent away. It does help, and since we all

do at sometime its ok. It does sound like you have an

attenative and caring doctor , so that is a plus. He

is limited to what he is given medically to try out on

you until you work as a team to pinpoint what works

and what doesnt. Dont wait months to let him know if

something isnt helping you. We have to do our own

part, as much as we may put it off and say it is not

fair, which of course is true, but the fact is,, if we

dont move, dont try to stretch and keep the joints

moving, they will freeze up on us and then it is very

very hard to get around at all. I just went off of

therapy, and have to do several types of exercises

twice a day. I catch myself putting it off or saying I

can skip a day, but if I do,,, I am stiff and less

likely to get back at it as a regular routing. And tht

is what it has to be, not a quick fix, but a lifestyle

change, I understand I will have to do this for rest

of my life, but it is totally in my control to do it

or not. After all I am the one that either suffers or

gains the benefits by my choice. All sounds good,

simple, logically, then why is it so hard to dig in

and keep at it.. Take care, hoping for better days

ahead.. JEnny in Missouri

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Well, I am glad you vented Cortnee My Hubby came up with something

he calls " The Salvage Theory " . If all I am able to do one day is put

away one clean spoon from the dishwasher, then I have " Salvaged the

Day " by doing something. Then I do not feel that olde guilt of getting

myself into just the most comfy position possible (emphasis on

possible) in my recliner and spending the rest of the day there, with

the TV on and either the Basenji or the Beagle on my lap. You are

Blessed to have a Doc who is concerned and acts concerned. I am in

search of yet another Doc because my current Doc is just not taking me

seriously.

Don't worry about how you are going to make it thru the rest of your

life in such pain. I take it one day at a time. Sometimes I can only

think one minute at a time!

" Whew, made it thru that minute.... " LOL

Seriously tho, lots of healing thoughts and prayers are coming your way,

Alice in Alaska http://maryals.blogspot.com/

On Thursday, August 18, 2005, at 05:54 PM, Cortnee wrote:

>

> Well im up and out early this morning.  Trevor and I were leaving the

> house at 6:40am to go to my Dr's appt.  Its close to downtown Dallas

> and with traffic you better leave early.  So we head out Im trying

> really hard not to freak out cause I hate traffic.  We get there safe

> and sound.  Luckily.

>

> Dr. Z comes in and looks me over. I had to do a stat blood test and

> Urine sample test.  Turns out that i have another Bladder

> Infection. Which means no chemo and no Humria.  I just about cried. I

> dont know how I can go on through the rest of my life in such pain. 

> Im not deforming yet, which is a blessing, but he seems really

> concerned. He kept commenting on my swelling and feeling my joints. I

> know when he's worried he has this look.  Cause normally hes all

> smiles.  He said that I have to take the antibioitcs for 3 days and

> then on Sunay I can start the Chemo and Monday I am to call them

> because after looking me over real good.  He checked my hips and I

> about came up off the table and I yelled out.  That really hurt.  He

> said I have brisitis in both of my hips and I have to try these pads

> that heat up for 8 hours and then these ben gay pads, if that doesnt

> work I am to call him and get a RX for a patch that might be

> better/stronger to releive the pain.  If all of those do work I may

> have to have hip injections in both hips.

>

> So Im sitting there listening to all of this and i start crying.  He's

> said its gonna be ok.  I said its not that.  I am only 31 Dr Z and

> when I think about a future filled with pain it breaks my heart. He

> said Cortnee, It will get better.  I said I hope so.  I dont know how

> much more I can do this. I held out for today because I thought I was

> going to get my medicine, I never though I would look forward to

> giving myself a shot or the chemo so badly.  I worry about my quality

> of life and if I will be able to walk or right or type.  I have these

> things on my feet that may or may not be nodules from the RA, he keeps

> an eye on them too.  His face today though, scared me, I know he was

> trying hard not to show it because I was so fragile.  I know

> he doesnt like the idea of the injections and I can magine he's

> thinking to himself, damn, I wanted to save her from that pain. See I

> know what its like to get those injections.  They are not fun.  I have

> had several in my wrists.

>

> I sit and wonder why do I have to go through so much.  All of my past

> and my medical problems.  Am I being punished for my wrong doings.

> Like I said Im only 31 and I have been though abuse, physical and

> mental, rape, abortion, losing people, watching death unfold.  I've

> had neck surgery where I had a double fusion, ive had carpal tunnel

> release in both hands.  Whats next.  I cant imagine needing a hip

> replacement at 31, but at this point its possible.  He said that I

> may have to have some scans and tests if it continues, I was afraid to

> ask what my future holds.  I know he doesnt KNOW for sure, but I can

> tell he has an idea, but he didnt discuss it with me. 

>

> have tried so hard not to feel sorry for myself.  I know there are so

> many others out there in  more pain and or dying.  Im not dying, but

> the pain is so unbelieveably bad at times.  It takes all i have jus

> tto sit up and move over to my chair in the mornings. My emotions are

> running wild and im quite terrified. I dont want to live my life in

> pain.  For lack of better statements...Its not fair....Its not.

>

> OK Ok, im done, i needed to vent!!!!

> Cortnee

>

>

[Guest guest]

Everyone, thanks so much for the kind words I can tell I am going to like it

here, you all are so nice and have great information, my Dr was impressed when I

took in some of the articles I recieved form this site. He loves that I am so

active in my own healing and illness and that I ask as many questions as I can

to insure that I am getting excatly what is best for me, Thanks agian,

CortneeTHANK YOU FOR BEING SUCH A GREAT TEAM!

Davenport <jennay43334@...> wrote:

Good job!, vent away. It does help, and since we all

do at sometime its ok. It does sound like you have an

attenative and caring doctor , so that is a plus. He

is limited to what he is given medically to try out on

you until you work as a team to pinpoint what works

and what doesnt. Dont wait months to let him know if

something isnt helping you. We have to do our own

part, as much as we may put it off and say it is not

fair, which of course is true, but the fact is,, if we

dont move, dont try to stretch and keep the joints

moving, they will freeze up on us and then it is very

very hard to get around at all. I just went off of

therapy, and have to do several types of exercises

twice a day. I catch myself putting it off or saying I

can skip a day, but if I do,,, I am stiff and less

likely to get back at it as a regular routing. And tht

is what it has to be, not a quick fix, but a lifestyle

change, I understand I will have to do this for rest

of my life, but it is totally in my control to do it

or not. After all I am the one that either suffers or

gains the benefits by my choice. All sounds good,

simple, logically, then why is it so hard to dig in

and keep at it.. Take care, hoping for better days

ahead.. JEnny in Missouri

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Cortnee,

Just know we always got your back here:) Tawny

> Good job!, vent away. It does help, and since we all

> do at sometime its ok. It does sound like you have an

> attenative and caring doctor , so that is a plus. He

> is limited to what he is given medically to try out on

> you until you work as a team to pinpoint what works

> and what doesnt. Dont wait months to let him know if

> something isnt helping you. We have to do our own

> part, as much as we may put it off and say it is not

> fair, which of course is true, but the fact is,, if we

> dont move, dont try to stretch and keep the joints

> moving, they will freeze up on us and then it is very

> very hard to get around at all. I just went off of

> therapy, and have to do several types of exercises

> twice a day. I catch myself putting it off or saying I

> can skip a day, but if I do,,, I am stiff and less

> likely to get back at it as a regular routing. And tht

> is what it has to be, not a quick fix, but a lifestyle

> change, I understand I will have to do this for rest

> of my life, but it is totally in my control to do it

> or not. After all I am the one that either suffers or

> gains the benefits by my choice. All sounds good,

> simple, logically, then why is it so hard to dig in

> and keep at it.. Take care, hoping for better days

> ahead.. JEnny in Missouri

>

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

>

>

[Guest guest]

Alice,

Oh yes, one day at a time! That is the best advice, we can only do

what we can, and it sure will wait for us to do later.

Have a great day,Tawny

> >

> > Well im up and out early this morning.  Trevor and I were leaving

the

> > house at 6:40am to go to my Dr's appt.  Its close to downtown

Dallas

> > and with traffic you better leave early.  So we head out Im

trying

> > really hard not to freak out cause I hate traffic.  We get there

safe

> > and sound.  Luckily.

> >

> > Dr. Z comes in and looks me over. I had to do a stat blood test

and

> > Urine sample test.  Turns out that i have another Bladder

> > Infection. Which means no chemo and no Humria.  I just about

cried. I

> > dont know how I can go on through the rest of my life in such

pain. 

> > Im not deforming yet, which is a blessing, but he seems really

> > concerned. He kept commenting on my swelling and feeling my

joints. I

> > know when he's worried he has this look.  Cause normally hes all

> > smiles.  He said that I have to take the antibioitcs for 3 days

and

> > then on Sunay I can start the Chemo and Monday I am to call them

> > because after looking me over real good.  He checked my hips and

I

> > about came up off the table and I yelled out.  That really hurt. 

He

> > said I have brisitis in both of my hips and I have to try these

pads

> > that heat up for 8 hours and then these ben gay pads, if that

doesnt

> > work I am to call him and get a RX for a patch that might be

> > better/stronger to releive the pain.  If all of those do work I

may

> > have to have hip injections in both hips.

> >

> > So Im sitting there listening to all of this and i start crying. 

He's

> > said its gonna be ok.  I said its not that.  I am only 31 Dr Z

and

> > when I think about a future filled with pain it breaks my

heart. He

> > said Cortnee, It will get better.  I said I hope so.  I dont know

how

> > much more I can do this. I held out for today because I thought I

was

> > going to get my medicine, I never though I would look forward to

> > giving myself a shot or the chemo so badly.  I worry about my

quality

> > of life and if I will be able to walk or right or type.  I have

these

> > things on my feet that may or may not be nodules from the RA, he

keeps

> > an eye on them too.  His face today though, scared me, I know he

was

> > trying hard not to show it because I was so fragile.  I know

> > he doesnt like the idea of the injections and I can magine he's

> > thinking to himself, damn, I wanted to save her from that

pain. See I

> > know what its like to get those injections.  They are not fun.  I

have

> > had several in my wrists.

> >

> > I sit and wonder why do I have to go through so much.  All of my

past

> > and my medical problems.  Am I being punished for my wrong

doings.

> > Like I said Im only 31 and I have been though abuse, physical and

> > mental, rape, abortion, losing people, watching death unfold. 

I've

> > had neck surgery where I had a double fusion, ive had carpal

tunnel

> > release in both hands.  Whats next.  I cant imagine needing a hip

> > replacement at 31, but at this point its possible.  He said that I

> > may have to have some scans and tests if it continues, I was

afraid to

> > ask what my future holds.  I know he doesnt KNOW for sure, but I

can

> > tell he has an idea, but he didnt discuss it with me. 

> >

> > have tried so hard not to feel sorry for myself.  I know there

are so

> > many others out there in  more pain and or dying.  Im not dying,

but

> > the pain is so unbelieveably bad at times.  It takes all i have

jus

> > tto sit up and move over to my chair in the mornings. My emotions

are

> > running wild and im quite terrified. I dont want to live my life

in

> > pain.  For lack of better statements...Its not fair....Its not.

> >

> > OK Ok, im done, i needed to vent!!!!

> > Cortnee

> >

> >

[Guest guest]

Honey, you are not being punished for anything, God doesn't work like

that. I know it seems like it sometimes, but I promise you He loves

you.Your sensitivity and sweet spirit come across so clearly, it's

obvious that you are a good person. I believe that someday you will

be able to use what you have gone through to help other people

because you are a survivor, and you have claimed victory over so many

things in your life. You have not let the bad things turn your heart

hard. I have faith that things will get better, that brighter days

are ahead for you. Take one day at a time, or one hour at a time, or

whatever you can do. Personally if it wasn't for Jesus I don't know

where I would be or how I would have handled the stuff I have gone

through in my life. E me if you need to vent or rant or whatever.

I'll be praying for comfort and peace for you. Hang in there.

Jane

>

> Well im up and out early this morning. Trevor and I were leaving

the

> house at 6:40am to go to my Dr's appt. Its close to downtown

Dallas

> and with traffic you better leave early. So we head out Im trying

> really hard not to freak out cause I hate traffic. We get there

safe

> and sound. Luckily.

>

> Dr. Z comes in and looks me over. I had to do a stat blood test

and

> Urine sample test. Turns out that i have another Bladder

Infection.

> Which means no chemo and no Humria. I just about cried. I dont

know

> how I can go on through the rest of my life in such pain. Im not

> deforming yet, which is a blessing, but he seems really concerned.

> He kept commenting on my swelling and feeling my joints. I know

when

> hes worried he has this look. Cause normally hes all smiles. He

> said that I have to take the antibioitcs for 3 days and then on

Sunay

> I can start the Chemo and Monday I am to call them because after

> looking me over real good. He checked my hips and I about came up

> off the table and I yelled out. That really hurt. He said I have

> brisitis in both of my hips and I have to try these pads that heat

up

> for 8 hours and then these ben gay pads, if that doesnt work I am

to

> call him and get a RX for a patch that might be better/stronger to

> releive the pain. If all of those do work I may have to have hip

> injections in both hips.

>

> So Im sitting there listening to all of this and i start crying.

Hes

> said its gonna be ok. I said its not that. I am only 31 Dr Z and

> when I think about a future filled with pain it breaks my heart.

He

> said Cortnee, It will get better. I said I hope so. I dont know

how

> much more I can do this. I held out for today because I thought I

> was going to get my medicine, I never though I would look forward

to

> giving myself a shot or the chemo so badly. I worry about my

quality

> of life and if I will be able to walk or right or type. I have

these

> things on my feet that may or may not be nodules from the RA, he

> keeps an eye on them too. His face today though, scared me, I know

> he was trying hard not to show it because I was so fragile. I know

> he doesnt like the idea of the injections and I can magine hes

> thinking to himself, damn, I wanted to save her from that pain.

See

> I know what its like to get those injections. They are not fun. I

> have had several in my wrists.

>

> I sit and wonder why do I have to go through so much. All of my

past

> and my medical problems. Am I being punished for my wrong doings.

> Like I said Im only 31 and I have been though abuse, physical and

> mental, rape, abortion, losing people, watching death unfold. Ive

> had neck surgery where I had a double fusion, ive had carpal tunnel

> release in both hands. Whats next. I cant imagine needing a hip

> replacement at 31, but at this point its possible. He said that I

> may have to have some scans and tests if it continues, I was afraid

> to ask what my future holds. I know he doesnt KNOW for sure, but I

> can tell he has an idea, but he didnt discuss it with me.

>

> have tried so hard not to feel sorry for myself. I know there are

> so many others out there in more pain and or dying. Im not dying,

> but the pain is so unbelieveably bad at times. It takes all i have

> jus tto sit up and move over to my chair in the mornings. My

> emotions are running wild and im quite terrified. I dont want to

> live my life in pain. For lack of better statements...Its not

> fair....Its not.

>

> OK Ok, im done, i needed to vent!!!!

> Cortnee

[Guest guest]

Helen,

My heart aches for you guys! I will think of you and Nick today!

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Friday, September 22, 2006 8:53 AM

Subject: Rough day

Nick is having a rough morning.

He was quiet all morning and suddenly brust into tears when his

brother got in his way and he flopped to the ground. He just sobbed

that his ankles hurt and he HATES having arthritis. It broke my heart.

I told him i hate it too.

Hes laying on the sofa with a hot water bottle on then and we will try

school a little later. I asked him if he wanted to use the schools

wheelchair, but hes scared of looking different. I'll go talk to the

school nurse and see what we can do for him for the day.

I just want to cry.

hugs Helen and (9,systemic)

[Guest guest]

Helen, I am sorry about Nick. This is such a tough disease. On

the children and the parents. I hope he loosens up throughout the

day. It is so hard to wake up every morning so stiff. I hope as

each minute passes, that his pain will lessen. Take care,

(n, 17,systemic)

On Sep 22, 2006, at 6:53 AM, hburger64 wrote:

> Nick is having a rough morning.

>

> He was quiet all morning and suddenly brust into tears when his

> brother got in his way and he flopped to the ground. He just sobbed

> that his ankles hurt and he HATES having arthritis. It broke my heart.

> I told him i hate it too.

>

> Hes laying on the sofa with a hot water bottle on then and we will try

> school a little later. I asked him if he wanted to use the schools

> wheelchair, but hes scared of looking different. I'll go talk to the

> school nurse and see what we can do for him for the day.

>

> I just want to cry.

>

> hugs Helen and (9,systemic)

>

>

>

[Guest guest]

Oh Helen:

I can so relate to where you are. Hannah had her rough day yesterday. She

went to gym and they played kickball. She said everything about it hurt. It

did not help that 2 girls in her class were being less than kind about it. She

said she did not want to tell the gym teacher because she did not want to the

whole class to know she was hurting. So she suffered through her day and had

major meltdown when she got home. I hate everything about this disease and my

heart breaks for all the kids like ours who just want to be like everyone else

:-(

Beth (Hannah, 9, unspecified arthritis)

hburger64 <hburger64@...> wrote:

Nick is having a rough morning.

He was quiet all morning and suddenly brust into tears when his

brother got in his way and he flopped to the ground. He just sobbed

that his ankles hurt and he HATES having arthritis. It broke my heart.

I told him i hate it too.

Hes laying on the sofa with a hot water bottle on then and we will try

school a little later. I asked him if he wanted to use the schools

wheelchair, but hes scared of looking different. I'll go talk to the

school nurse and see what we can do for him for the day.

I just want to cry.

hugs Helen and (9,systemic)

[Guest guest]

Helen - I am crying for Nick. He is at such a tender age. Life really isn't

fair and Nick seems to get the brunt of it. I am soo sorry he's feeling like

this. I don't have any cheerful words, but tell him to hang in there. You too

- I know how hard it is on mum..

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

Ohhh Helen.

I am so sorry about Nick. These kids are such troopers that when they stop

and finally cry out in frustration and pain... the walls come crumbling down.

I'm sending hugs and prayers your way.

Love to you guys-

Colleen

hburger64 <hburger64@...> wrote:

Nick is having a rough morning.

He was quiet all morning and suddenly brust into tears when his

brother got in his way and he flopped to the ground. He just sobbed

that his ankles hurt and he HATES having arthritis. It broke my heart.

I told him i hate it too.

Hes laying on the sofa with a hot water bottle on then and we will try

school a little later. I asked him if he wanted to use the schools

wheelchair, but hes scared of looking different. I'll go talk to the

school nurse and see what we can do for him for the day.

I just want to cry.

hugs Helen and (9,systemic)

---------------------------------

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi all,

Just having a really bad day. I found out yesterday that my ANA

Profile is now 1:320, it was 1:160 in December when my health first

started failing.

I went to my finally physcial therapist appoinment today. He said

there was nothing more that he could do for my hip pain, that he

believes it is all related to the auto-immune stuff. I just started

bawling on the way home. I am crying now as well.

I feel like I am going to die. I drink water all day, yet I am still

thirsty. The top hard pallet of my mouth is yellow in color and I

have a rough spot up there. I have a hard, sore like growth on the

cuticle of my thumb nail. I have noticed that my head feels really

heavy, like my neck muscles are weakening.

I am so very sad. I don't want to have a serious disease. I want to

get well and have a baby. Please, please tell me there is light at

the end of this dark tunnel. You all are my only hope. You are the

only one who believes my implants are causing my health issues. I

really feel like I have something fatal that they haven't found.

I am so sorry that I am such a downer. I just feel so horrible

physically.

God Bless you all for being here for me,

Lynn

[Guest guest]

Lynn,

Stress is the enemy of auto-immune problems. Stressing will make you worse.

What is your diet? Are you following a really clean diet?

I don't think you have any fatal illness. I think you are just

severely impacted by your implants. Thank God they come out in 2 weeks.

Lynda

At 06:38 PM 3/30/2007, you wrote:

>Hi all,

>

>Just having a really bad day. I found out yesterday that my ANA

>Profile is now 1:320, it was 1:160 in December when my health first

>started failing.

>

>I went to my finally physcial therapist appoinment today. He said

>there was nothing more that he could do for my hip pain, that he

>believes it is all related to the auto-immune stuff. I just started

>bawling on the way home. I am crying now as well.

>

>I feel like I am going to die. I drink water all day, yet I am still

>thirsty. The top hard pallet of my mouth is yellow in color and I

>have a rough spot up there. I have a hard, sore like growth on the

>cuticle of my thumb nail. I have noticed that my head feels really

>heavy, like my neck muscles are weakening.

>

>I am so very sad. I don't want to have a serious disease. I want to

>get well and have a baby. Please, please tell me there is light at

>the end of this dark tunnel. You all are my only hope. You are the

>only one who believes my implants are causing my health issues. I

>really feel like I have something fatal that they haven't found.

>

>I am so sorry that I am such a downer. I just feel so horrible

>physically.

>

>God Bless you all for being here for me,

>Lynn

>

>

[Guest guest]

Lynn,

You should avoid the Sun with all cost... Wear SPF 30 we are not suppose to get sun, it makes our rash worsen....

God Bless,

~See what's free at AOL.com.

[Guest guest]

I have been much better with my diet. Just recently have the time to

read the Yeast Connection. All I drink is water, tea or juice (w/out

sugar). I have sugar a few times but rarely. I know I need to get

better and I plan to but I have been so sick it is hard to study.

Lynda, my face is also getting hyperpigmentation, it is getting bad.

I was out in the sun for a little while last weekend and I have brown

spots all over my forehead, a few on my cheeks and my chin is now

covered. I am just so very scared because my muscles are so week and

I am getting worse. I know I only have two weeks to go but I just

hope my health holds up. I don't have much of an appetite either, so

keeping my strength up has been rough.

Thank you for the advice. I will try not to stress. I will keep

studying and following the diet.

Lynn

>

> >Hi all,

> >

> >Just having a really bad day. I found out yesterday that my ANA

> >Profile is now 1:320, it was 1:160 in December when my health first

> >started failing.

> >

> >I went to my finally physcial therapist appoinment today. He said

> >there was nothing more that he could do for my hip pain, that he

> >believes it is all related to the auto-immune stuff. I just started

> >bawling on the way home. I am crying now as well.

> >

> >I feel like I am going to die. I drink water all day, yet I am

still

> >thirsty. The top hard pallet of my mouth is yellow in color and I

> >have a rough spot up there. I have a hard, sore like growth on the

> >cuticle of my thumb nail. I have noticed that my head feels really

> >heavy, like my neck muscles are weakening.

> >

> >I am so very sad. I don't want to have a serious disease. I want to

> >get well and have a baby. Please, please tell me there is light at

> >the end of this dark tunnel. You all are my only hope. You are the

> >only one who believes my implants are causing my health issues. I

> >really feel like I have something fatal that they haven't found.

> >

> >I am so sorry that I am such a downer. I just feel so horrible

> >physically.

> >

> >God Bless you all for being here for me,

> >Lynn

> >

> >

>

[Guest guest]

Lynn, I honestly am not sure how to answer this but I will try. I developed Fibromyalgia and many other things which some may have been due to many tramatic events in my life, but I also think the implants either caused it or made it worse, hindering me from getting better. I had my implants removed over two weeks ago and my Fibro is back full force...I too am feeling horribly am going through crying moments because I had really hope that the debilitating muscle pain and burning would go away. I feel, deep in my heart, that my implants were going to be the death of me...that they were making my symptoms worse. I have to believe that I have biotoxins that have been stirred up and it will take time for me to get better. Look how long it took for us to be sick...there is a lot of reversing that needs to be done. You've seen all of the stuff on implants and I know that you

know they have to come out. You are being explanted soon and it's very important for you to try to stay positive while you are heading toward this. It's okay to break down, but just remind yourself that you are taking the first step necessary and the rest will follow. Concentrate on explant...you are going to an awesome doctor...I am so glad I went to Huang. We are all here for you....just know that you can get better, but that unfortunately it won't be overnight like we all wish. You will get there...as we all will. We are all here for you....you are in a good place. Love, spinkscl <spinkscl@...> wrote: Hi all,Just having a really bad day. I found out yesterday that my ANA Profile is now 1:320, it was 1:160 in December when my health first started failing. I went to my finally physcial therapist appoinment today. He said there was nothing more that he could do for my hip pain, that he believes it is all related to the auto-immune stuff. I just started bawling on the way home. I am crying now as well. I feel like I am going to die. I drink water all day, yet I am still thirsty. The top hard pallet of my mouth is yellow in color and I have a rough spot up there. I have a hard, sore like growth on the cuticle of my thumb nail. I have noticed that my head feels really heavy, like my neck muscles are weakening. I am so very sad.

I don't want to have a serious disease. I want to get well and have a baby. Please, please tell me there is light at the end of this dark tunnel. You all are my only hope. You are the only one who believes my implants are causing my health issues. I really feel like I have something fatal that they haven't found. I am so sorry that I am such a downer. I just feel so horrible physically. God Bless you all for being here for me,Lynn

Bored stiff? Loosen up...Download and play hundreds of games for free on Games.

[Guest guest]

Birth Control pills gave me hyperpigmentation, but it went away.

Juice is not good, too much sugar. Better to eat

a little fruit. Very little. And no sugar.

Raw veggies are great as snacks.

Keep as busy as possible, stay away from researching illness on the internet.

No news on my son, he has an appt. with the doc

next Thurs. Must not be too bad, otherwise it would be sooner?????

Lynda

At 07:03 PM 3/30/2007, you wrote:

>I have been much better with my diet. Just recently have the time to

>read the Yeast Connection. All I drink is water, tea or juice (w/out

>sugar). I have sugar a few times but rarely. I know I need to get

>better and I plan to but I have been so sick it is hard to study.

>

>Lynda, my face is also getting hyperpigmentation, it is getting bad.

>I was out in the sun for a little while last weekend and I have brown

>spots all over my forehead, a few on my cheeks and my chin is now

>covered. I am just so very scared because my muscles are so week and

>I am getting worse. I know I only have two weeks to go but I just

>hope my health holds up. I don't have much of an appetite either, so

>keeping my strength up has been rough.

>

>Thank you for the advice. I will try not to stress. I will keep

>studying and following the diet.

>

>Lynn

>

>

> >

> > >Hi all,

> > >

> > >Just having a really bad day. I found out yesterday that my ANA

> > >Profile is now 1:320, it was 1:160 in December when my health first

> > >started failing.

> > >

> > >I went to my finally physcial therapist appoinment today. He said

> > >there was nothing more that he could do for my hip pain, that he

> > >believes it is all related to the auto-immune stuff. I just started

> > >bawling on the way home. I am crying now as well.

> > >

> > >I feel like I am going to die. I drink water all day, yet I am

>still

> > >thirsty. The top hard pallet of my mouth is yellow in color and I

> > >have a rough spot up there. I have a hard, sore like growth on the

> > >cuticle of my thumb nail. I have noticed that my head feels really

> > >heavy, like my neck muscles are weakening.

> > >

> > >I am so very sad. I don't want to have a serious disease. I want to

> > >get well and have a baby. Please, please tell me there is light at

> > >the end of this dark tunnel. You all are my only hope. You are the

> > >only one who believes my implants are causing my health issues. I

> > >really feel like I have something fatal that they haven't found.

> > >

> > >I am so sorry that I am such a downer. I just feel so horrible

> > >physically.

> > >

> > >God Bless you all for being here for me,

> > >Lynn

> > >

> > >

> >

>

>

[Guest guest]

Thank you for the encouraging words. I am trying very hard

to stay positive but my body feels as though it is failing and

quickly! I am trying to do everything possible to be healthy and

still, I am getting worse.

I agree, I feel it is the implants. I don't know what the trigger

was that started the downhill progress but it seems to be getting

worse by the day. Two weeks seems like years. Hopefully the " flare "

or whatever is happening settles down and I feel better soon.

I am sorry to here you fibromyalgia is back. I am glad to see you

have such a positive attitude. You take care, I know you have been

through so much with your health and your daughters.

Love,

Lynn

> Hi all,

>

> Just having a really bad day. I found out yesterday that my ANA

> Profile is now 1:320, it was 1:160 in December when my health first

> started failing.

>

> I went to my finally physcial therapist appoinment today. He said

> there was nothing more that he could do for my hip pain, that he

> believes it is all related to the auto-immune stuff. I just started

> bawling on the way home. I am crying now as well.

>

> I feel like I am going to die. I drink water all day, yet I am

still

> thirsty. The top hard pallet of my mouth is yellow in color and I

> have a rough spot up there. I have a hard, sore like growth on the

> cuticle of my thumb nail. I have noticed that my head feels really

> heavy, like my neck muscles are weakening.

>

> I am so very sad. I don't want to have a serious disease. I want to

> get well and have a baby. Please, please tell me there is light at

> the end of this dark tunnel. You all are my only hope. You are the

> only one who believes my implants are causing my health issues. I

> really feel like I have something fatal that they haven't found.

>

> I am so sorry that I am such a downer. I just feel so horrible

> physically.

>

> God Bless you all for being here for me,

> Lynn

>

>

>

>

>

>

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

> Bored stiff? Loosen up...

> Download and play hundreds of games for free on Games.

>

[Guest guest]

Lynn,

I think it was the hormone shot that started the downward trend.

I do think you will recover. Just believe.

Think positive, take care of yourself, and time

will soon be here for the explant.

Lynda

At 07:35 PM 3/30/2007, you wrote:

>Thank you for the encouraging words. I am trying very hard

>to stay positive but my body feels as though it is failing and

>quickly! I am trying to do everything possible to be healthy and

>still, I am getting worse.

>

>I agree, I feel it is the implants. I don't know what the trigger

>was that started the downhill progress but it seems to be getting

>worse by the day. Two weeks seems like years. Hopefully the " flare "

>or whatever is happening settles down and I feel better soon.

>

>I am sorry to here you fibromyalgia is back. I am glad to see you

>have such a positive attitude. You take care, I know you have been

>through so much with your health and your daughters.

>

>Love,

>Lynn

>

>

> > Hi all,

> >

> > Just having a really bad day. I found out yesterday that my ANA

> > Profile is now 1:320, it was 1:160 in December when my health first

> > started failing.

> >

> > I went to my finally physcial therapist appoinment today. He said

> > there was nothing more that he could do for my hip pain, that he

> > believes it is all related to the auto-immune stuff. I just started

> > bawling on the way home. I am crying now as well.

> >

> > I feel like I am going to die. I drink water all day, yet I am

>still

> > thirsty. The top hard pallet of my mouth is yellow in color and I

> > have a rough spot up there. I have a hard, sore like growth on the

> > cuticle of my thumb nail. I have noticed that my head feels really

> > heavy, like my neck muscles are weakening.

> >

> > I am so very sad. I don't want to have a serious disease. I want to

> > get well and have a baby. Please, please tell me there is light at

> > the end of this dark tunnel. You all are my only hope. You are the

> > only one who believes my implants are causing my health issues. I

> > really feel like I have something fatal that they haven't found.

> >

> > I am so sorry that I am such a downer. I just feel so horrible

> > physically.

> >

> > God Bless you all for being here for me,

> > Lynn

> >

> >

> >

> >

> >

> >

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

> > Bored stiff? Loosen up...

> > Download and play hundreds of games for free on Games.

> >

>

>