Mickey

[Guest guest]

Hello Mickey what a brave girl you are!!!!!!!!!!!!!Good to hear everything

is going well with the shots..

good luck and ((((hugs))))) to you and your family!!!!!

karen(tabith 16...poly)

From: Lynn Young <llyoung@...>

Reply-

" " < >

Subject: Mickey

Date: Sun, 16 Sep 2001 10:49:29 -0400

Hi All:

As you may or may not recall, Mickey went almost 2 months this summer

totally off Prednisone. But she flared badly in early August and went back

up to 16mg/day. She is now back down to 10mg, and that was a really fast

taper... her bloodwork shows high SED rates yet, so we're holding at 10 for

a while.

Also made incredible progress with the weekly methotrexate injections. I had

been (at her request) giving her the needles after she was asleep, but that

caused even more problems. So we had a long talk about it (me mostly

listening, for a change!,) instead of telling her all the reasons why we had

to, which she knew, I just listened to her talk about why she didn't like

it. She concluded for herself that like it or not, she knew she had to, so

then we brainstormed different ways she could distract herself to make it

more bearable. She practices making a new marrionette giraffe she got at the

fall fair dance, talk, whatever. Its working amazingly well. No tears, no

throwing up.... just an acknowledgement " I REALLY don't like this, Mommy " -

and we're done. She's getting pretty good with puppets, too!

Sometimes I really need reminding that it is just as important (if not more

important!) to listen to my kids instead of talking.

Lynn

_________________________________________________________________

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[Guest guest]

What great news for both of you! It's an important lesson we often forget.

Just a quick question--what have her sed rates been (at time of flare, and

now)? Abbie has gone from 16 in July to 30 2 weeks ago and her doctor raised

her prednisone again in anticipation of a flare.

Christy

[Guest guest]

That is great....I think all parents need that " gentle " nudge now and

then--myself included.

Keep on listening and hugging

Sharon and Meghann

(another one who sometimes has to nudge herself to listen)

JRA and PRS

Mickey

> Hi All:

>

> As you may or may not recall, Mickey went almost 2 months this summer

> totally off Prednisone. But she flared badly in early August and went back

> up to 16mg/day. She is now back down to 10mg, and that was a really fast

> taper... her bloodwork shows high SED rates yet, so we're holding at 10

for

> a while.

>

> Also made incredible progress with the weekly methotrexate injections. I

had

> been (at her request) giving her the needles after she was asleep, but

that

> caused even more problems. So we had a long talk about it (me mostly

> listening, for a change!,) instead of telling her all the reasons why we

had

> to, which she knew, I just listened to her talk about why she didn't like

> it. She concluded for herself that like it or not, she knew she had to, so

> then we brainstormed different ways she could distract herself to make it

> more bearable. She practices making a new marrionette giraffe she got at

the

> fall fair dance, talk, whatever. Its working amazingly well. No tears, no

> throwing up.... just an acknowledgement " I REALLY don't like this,

Mommy " -

> and we're done. She's getting pretty good with puppets, too!

>

> Sometimes I really need reminding that it is just as important (if not

more

> important!) to listen to my kids instead of talking.

>

> Lynn

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi Lynn,

I was so glad to read your message about how Mickey's been doing better

with the MTX injections. You're absolutely right, about us needing to

listen more instead of doing the majority of the talking. It sounds like

Mickey has come up with a workable solution to make things easier to

cope with. She's found an acceptable outlet, her giraffe, to help

express how she's feeling. We all, sometimes, have to do things that we

don't want to and don't like. Our children may learn this a little

earlier than most but coming to terms with it is a big achievement!

We're proud of you Mickey and very happy that it's not as bad as it used

to be for you Also happy to hear that you've been able to reduce the

prednisone some, already. We know how hard that can be too, so wish you

the best. Maybe that SED rate will be lower next time around and you can

try again soon.

All the best,

Georgina

[Guest guest]

Lynn,

That is great news,about Mickey !! I hope the injection goes well on

Friday.Logan has been doing pretty good lately,other than a recent bout

with croup. Arthur has been hiding for a while now.Gotta go,,my oldest

daughter is having a bad flare of her asthma,and she needs another

treatment.

Kim and Logan 5 Poly

[Guest guest]

Lynn-

I'm so happy to hear Mickey is doing so well. Maybe the joint injection will be the last boost she needs to make Arthur go away for a while. Hope you and your family get over your bouts of sickness. Sounds like you have your hands full -- do you live out in the country?? What do you do with all those horses?

Diane (, 3, pauci)

[Guest guest]

That's wonderful news about Mickey! Best of luck with the Prednisone

taper.

Pam ('s mum, 4, systemic)

Quoting Lynn Young <llyoung@...>:

> Hi Friends (I liked that the " new guy " Lawrence started his email that

> way):

>

> Mickey had a check up at Sick Kids yesterday and they found that at this

> time, only her left knee is affected by the arthritis. YAY!!! We can

> continue to reduce her prednisone and hopefully in a month, try her off of

> it again. I am so afraid of another terrible flare up. They will be

> injecting her knee next Friday, to try for a better response than last

> time.

>

> I haven't been " on " much lately - first Mickey had a bad cold, then my

> husband, and now me. I feel like my head is wrapped in fuzzy wool, and I am

> experiencing an acute energy shortage! I feel like I could sleep all day.

> Not that that's likely with two active kids, 6 horses, 2 cats, 2 hamsters

> and 1 rambunctious dog!! The back-to-school readjustments have been taking

> up my time, too. Hopefully, things will be back on an even keel soon.

>

> Lynn

>

>

>

[Guest guest]

Hi Lynn,

So sorry to hear that Mickey isn't doing so well. I really wasn't expecting to see that her dose of steroids was pushed up again but I hope that helps, though, to get her through this flare and have her feeling better quickly. I'm sorry she's had to miss out on so many of the fun school activities she would have liked to participate in. There have been a few years when Josh was flaring during this time of year too. So when you mentioned that bittersweet sort of feeling ... I do know what you mean. My heart goes out to all of our kids who are having a difficult time right now. Quite a few, it seems.

You're cleaning to prepare for holiday company. I just finished a major "spring" cleaning session here, too. When the computer wasn't working I figured it was as good a time as ever to do some re-arranging. I even did a complete overhaul of our very large aquarium and moved it into the dining room, for a completely different look. That project alone took the better part of two days!

I was too impatient to continue calling and waiting on Hewlett Packard to get it together and arrange for repair of our desktop, which is still under warranty. Instead, on Saturday I packed it up and brought it into a local shop. Wouldn't you know it? No sooner than the guy plugged it in to begin diagnostics, the problem appeared to be gone! Everything's working fine. Very strange. I'm not sure what to think, really, but I'm very happy to be up and running again and able to be back in touch with all of you : )

I'll have to look for that book that's been mentioned. Sounds like something both my children might like to read.

Take Care,

Georgina

----- Original Message -----

From: Lynn

HiI haven't posted in a while. Just feeling sort of blue... Mickey had been doing really well - down to 1mg prednisone per day - but two weeks ago she flared really badly again. Worse flare in years, really, it hasn't been this bad since that first really rough two years before they found her "magic mix". I think she's flared because she had to go off the mtx for a few weeks because a bad cold was turning into pneumonia... even though she's back on the mtx now, she has flared really badly. High fevers again, the rash is back, most days she can't walk before noon and even after she can hobble around, the stiffness doesn't go away. Poor kid. I had her down to Sick Kids yesterday and Dr. Schneider wanted to inject her knees (the worst joints right now) then and there but there was no anesthesiologist available, and the oral sedative they sometimes use - Medazelam (spelling??) makes her hyperactive and giddy/funny instead of sleepy. She wasn't exactly disappointed they couldn't inject her joints! We go back January 10th for that - in the meantime, she is getting 10mg prednisone twice a day. God, been a while since she was on that high a dose. I hate this. I didn't exactly forget how it could tear your heart out to see your baby (even though she's 8 going on 18) hurting that bad. But - its been a while, and I'd gotten used to her having mostly good days. The worst part for her is missing all the special seasonal stuff going on at school. She missed all the days they were making Christmas crafts for family, missed her Christmas concert, missed the special party they had planned for the kids who had read the most books over the term... she went to school a couple of days even though she could barely walk just because she hates missing all this. She hates the other kids asking what's wrong, hates especially the ones who think she is playing this up for special attention - geez sometimes kids can be stupid and cruel. She hates being different. But then - at Sick Kids I ran into a couple I met when Mickey got to go to DisneyWorld last April with "Dreams Take Flight" - for kids with chronic and life threatening illnesses. Their little boy, , has a rare form of cancerous brain tumour. He is on borrowed time, and in some sort of experimental protocol - because he has nothing left to lose, and it makes me feel humble and grateful that as lousy as the arthritis is for Mickey - I am not likely to lose her from it. And I don't live with wondering will she even see her next birthday. I know life has no guarantees, not for anyone - but despite this wretched illness, we still have so much to be grateful for... I feel ashamed that I sometimes lose sight of that.Oh - whoever recommended (Robbin?) that Peg Kehret book - "my brother made me do it" - wow, excellent. I cried my eyes out (what a sap!) It is so 'on the money' describing how the girl feels, at least from what I've seen Mickey experiencing. Anyway - I've been cleaning my house like crazy - my family is coming here for Christmas for a change, it is SO nice to not have to be the one doing the travelling! I have been reading the posts - just not saying much. And I've rambled on way way way too much. Just in a very - bittersweet - sort of mood today. I hope you are all blessed with a very special holiday season.-- LynnMom to: Mickey (8), systemic jra since 3Kinsey(6), wonderful sister to Mickey

[Guest guest]

Lynn,

I'm so sorry to hear about Mickey. I wish I could do more. I can

certainly empathize with you on the parties,,,my oldest daughter has

missed so many Christmas parties,,growing up,,because this is when her

asthma is the worst. I hope you can get some relief soon.

Kim and Logan 5 poly

[Guest guest]

Mickey

HiI haven't posted in a while. Just feeling sort of blue... Mickey had been doing really well - down to 1mg prednisone per day - but two weeks ago she flared really badly again. Worse flare in years, really, it hasn't been this bad since that first really rough two years before they found her "magic mix". I think she's flared because she had to go off the mtx for a few weeks because a bad cold was turning into pneumonia... even though she's back on the mtx now, she has flared really badly. High fevers again, the rash is back, most days she can't walk before noon and even after she can hobble around, the stiffness doesn't go away. Poor kid. I had her down to Sick Kids yesterday and Dr. Schneider wanted to inject her knees (the worst joints right now) then and there but there was no anesthesiologist available, and the oral sedative they sometimes use - Medazelam (spelling??) makes her hyperactive and giddy/funny instead of sleepy. She wasn't exactly disappointed they couldn't inject her joints! We go back January 10th for that - in the meantime, she is getting 10mg prednisone twice a day. God, been a while since she was on that high a dose. I hate this. I didn't exactly forget how it could tear your heart out to see your baby (even though she's 8 going on 18) hurting that bad. But - its been a while, and I'd gotten used to her having mostly good days. The worst part for her is missing all the special seasonal stuff going on at school. She missed all the days they were making Christmas crafts for family, missed her Christmas concert, missed the special party they had planned for the kids who had read the most books over the term... she went to school a couple of days even though she could barely walk just because she hates missing all this. She hates the other kids asking what's wrong, hates especially the ones who think she is playing this up for special attention - geez sometimes kids can be stupid and cruel. She hates being different. But then - at Sick Kids I ran into a couple I met when Mickey got to go to DisneyWorld last April with "Dreams Take Flight" - for kids with chronic and life threatening illnesses. Their little boy, , has a rare form of cancerous brain tumour. He is on borrowed time, and in some sort of experimental protocol - because he has nothing left to lose, and it makes me feel humble and grateful that as lousy as the arthritis is for Mickey - I am not likely to lose her from it. And I don't live with wondering will she even see her next birthday. I know life has no guarantees, not for anyone - but despite this wretched illness, we still have so much to be grateful for... I feel ashamed that I sometimes lose sight of that.Oh - whoever recommended (Robbin?) that Peg Kehret book - "my brother made me do it" - wow, excellent. I cried my eyes out (what a sap!) It is so 'on the money' describing how the girl feels, at least from what I've seen Mickey experiencing. Anyway - I've been cleaning my house like crazy - my family is coming here for Christmas for a change, it is SO nice to not have to be the one doing the travelling! I have been reading the posts - just not saying much. And I've rambled on way way way too much. Just in a very - bittersweet - sort of mood today. I hope you are all blessed with a very special holiday season.-- LynnMom to: Mickey (8), systemic jra since 3Kinsey(6), wonderful sister to Mickey

[Guest guest]

Hi Lynn,

Just wanted to say hello, and tell you how sorry I am to hear that Mickey is

flaring. I too, was accustomed to Robbie having mostly good days - I know how

heartbreaking it is to see it. My thoughts and prayers are with you - and I

wish you and Mickey and your entire family a wonderful flare free New Year.

Val

Rob's Mom (5,systemic)

In a message dated 12/18/2002 1:28:16 PM Eastern Standard Time, llyoung@...

writes:

> Hi

> I haven't posted in a while. Just feeling sort of blue... Mickey had been

doing really well - down to 1mg prednisone per day - but two weeks ago she

flared really badly again. Worse flare in years, really, it hasn't been this bad

since that first really rough two years before they found her " magic mix " . I

think she's flared because she had to go off the mtx for a few weeks because a

bad cold was turning into pneumonia... even though she's back on the mtx now,

she has flared really badly. High fevers again, the rash is back, most days she

can't walk before noon and even after she can hobble around, the stiffness

doesn't go away. Poor kid. I had her down to Sick Kids yesterday and Dr.

Schneider wanted to inject her knees (the worst joints right now) then and there

but there was no anesthesiologist available, and the oral sedative they

sometimes use - Medazelam (spelling??) makes her hyperactive and giddy/funny

instead of sleepy. She wasn't exactly disappointed they couldn't inject her

joints! We go back January 10th for that - in the meantime, she is getting 10mg

prednisone twice a day. God, been a while since she was on that high a dose.

>

> I hate this. I didn't exactly forget how it could tear your heart out to see

your baby (even though she's 8 going on 18) hurting that bad. But - its been a

while, and I'd gotten used to her having mostly good days. The worst part for

her is missing all the special seasonal stuff going on at school. She missed all

the days they were making Christmas crafts for family, missed her Christmas

concert, missed the special party they had planned for the kids who had read the

most books over the term... she went to school a couple of days even though she

could barely walk just because she hates missing all this. She hates the other

kids asking what's wrong, hates especially the ones who think she is playing

this up for special attention - geez sometimes kids can be stupid and cruel. She

hates being different.

>

> But then - at Sick Kids I ran into a couple I met when Mickey got to go to

DisneyWorld last April with " Dreams Take Flight " - for kids with chronic and

life threatening illnesses. Their little boy, , has a rare form of

cancerous brain tumour. He is on borrowed time, and in some sort of experimental

protocol - because he has nothing left to lose, and it makes me feel humble and

grateful that as lousy as the arthritis is for Mickey - I am not likely to lose

her from it. And I don't live with wondering will she even see her next

birthday. I know life has no guarantees, not for anyone - but despite this

wretched illness, we still have so much to be grateful for... I feel ashamed

that I sometimes lose sight of that.

>

> Oh - whoever recommended (Robbin?) that Peg Kehret book - " my brother made me

do it " - wow, excellent. I cried my eyes out (what a sap!) It is so 'on the

money' describing how the girl feels, at least from what I've seen Mickey

experiencing.

>

> Anyway - I've been cleaning my house like crazy - my family is coming here for

Christmas for a change, it is SO nice to not have to be the one doing the

travelling! I have been reading the posts - just not saying much. And I've

rambled on way way way too much. Just in a very - bittersweet - sort of mood

today. I hope you are all blessed with a very special holiday season.

>

>

> --

> Lynn

> Mom to:

> Mickey (8), systemic jra since 3

> Kinsey(6), wonderful sister to Mickey

>

>

[Guest guest]

Hi Althea, I am so happy that Mickey is doing so well. It is so sad when they

can' tell you how much they are hurting. We give an aspirin and

glucosamine Chondroitin to help with the arthritis. Give Mickey a gentle pat for

me.

Hugs

June

[Guest guest]

Have you ever heard the virus coming back with a vengence. I did tx for 2

months..went down to 13,000count and had to quit because of sides. Two years

later...I went from a Stage 2 to a Stage 4 (cirrhosis).....I don't drink or

smoke.......take drugs of any kind....????........Pam ga

micky <micky@...> wrote:Dear Tammie,

it's normal to feel that way, becuase atthe moment you have the back

up of the medication and eventhough it has worked, the doubt in our

mind is " what if when I stop, the virus returns " forget about that now.

As for feeling good, it will take some time for your body to

reorganize itself and start working properly again but IT WILL HAPPEN,

I PROMISE!!!

the first few days you will be destoxing so you will have to drink

goodwater, take milk thistle and start eating slowly but properly.

After two weeks you will feel good and life will take its path again.

Don't worry about it, you'll be just fine! Only two to go, YEAHHH!!!

big hugs

Micky

[Guest guest]

Have you ever heard the virus coming back with a vengence. I did tx for 2

months..went down to 13,000count and had to quit because of sides. Two years

later...I went from a Stage 2 to a Stage 4 (cirrhosis).....I don't drink or

smoke.......take drugs of any kind....????........Pam ga

micky <micky@...> wrote:Dear Tammie,

it's normal to feel that way, becuase atthe moment you have the back

up of the medication and eventhough it has worked, the doubt in our

mind is " what if when I stop, the virus returns " forget about that now.

As for feeling good, it will take some time for your body to

reorganize itself and start working properly again but IT WILL HAPPEN,

I PROMISE!!!

the first few days you will be destoxing so you will have to drink

goodwater, take milk thistle and start eating slowly but properly.

After two weeks you will feel good and life will take its path again.

Don't worry about it, you'll be just fine! Only two to go, YEAHHH!!!

big hugs

Micky