Diane

November 22, 2008

Diane,

Hang in there! Sorry to see you are in the resort. I'll be thinkin of you and

hoping you heal up quickly so you can be out to enjoy the holiday with those you

love. Many well wishes coming to you from South West Missouri.

Feel Better Soon

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November 22, 2008

Diane

well sorry your were your at but hey if your still there on gobble day look at

it this way no cooking and no doing the dishes and or clean up! there is a

silver lining some times it is how we look at it and if your as twisted as me

then it is some times easy to see or is that as lazy as me o well hope your out

and running a muck sooner then later

hugs

the rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

To learn about Stills Disease http://www.stillsdisease.org/stills_info

For conservitive minded people http://www.americac2c.org " If we ever forget

that we're one nation under God, then we will be a nation gone under. " ~

Reagan

In the old days a man who saved money was a miser; nowadays he's a wonder.

~Author Unknown

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.~Cicero

" The most terrifying words in the English language are: I'm from the

government and I'm here to help. " ~ Reagan

November 22, 2008

Diane

well sorry your were your at but hey if your still there on gobble day look at

it this way no cooking and no doing the dishes and or clean up! there is a

silver lining some times it is how we look at it and if your as twisted as me

then it is some times easy to see or is that as lazy as me o well hope your out

and running a muck sooner then later

hugs

the rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

To learn about Stills Disease http://www.stillsdisease.org/stills_info

For conservitive minded people http://www.americac2c.org " If we ever forget

that we're one nation under God, then we will be a nation gone under. " ~

Reagan

In the old days a man who saved money was a miser; nowadays he's a wonder.

~Author Unknown

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.~Cicero

" The most terrifying words in the English language are: I'm from the

government and I'm here to help. " ~ Reagan

November 24, 2008

I will growl with you!!!! GRR Dragon be gone!! Love Ya Liz

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January 11, 2009

Hi Veri,

I had to chuckle just a little when I read your email!! I honestly would not

know any of those things either if it weren't for Maggie! Don't blame it on your

mind, there are days my mind spends the majority of it's hours on stand by! ;0)

OI or Osteogenesis Imperfecta is just a very fancy name for " Brittle Bone "

disease. Maggie has type 1/4 and has had hundreds of broken bones. This is

totally Genetic and has nothing at all to do with JRA, but sure complicates

things much of the time. She gets infusions to help build bone density and

relieve bone pain every three months for this.

CP or Cerebral Palsy was damage caused to her brain during and after birth. I

am type 1 diabetic and my blood sugars were so high during her birth that she

could not maintain her own blood sugars afterwards, this caused her blood sugars

to become so low so fast and for so long that her brain was without the oxygen

it needed for a short time. Her muscles had become completely spastic and she

now has an Intrathecal Baclofen Pump inside of her lower right abdomen (size of

a hockey puck and inplanted since age 7) that continuously pumps muscle

relaxants into her spine so she has some mobility and is able to move around

more freely. (this enables her to walk short distances, play the guitar etc.)

Again, this has nothing to do with the JRA

PIDD or Primary Immuneodeficiency Disease. Maggie's immune system does not

function because of the lack of Switching - B cells not too mention the little

bit that she does have do not function properly. She has over lapping issues

which make it very hard to treat. For this she receives IVIg (50grams) every

other week. With the PIDD, there is a great question that if her doctor's would

have recognized this at birth possibly they could have slowed down or even

prevented some of the autoimmune issues. Because this was not diagnosed

immediately it caused her immune system to go haywire and could have even

sparked all of the autoimmune issues. I doubt we will ever really know, but I

guess it is a thought.

She is a pretty tough kid but has had her fair share of pain issues. Every

once and a great while she tries to give up on us. When she has a huge flare up

her organs flare as well. I guess you could say we still haven't found a decent

cocktail of meds for the autoimmune issues. Steroids seem to be where we end up

EVERY time. (Naturally not her favorite choice at age 11)

How is Jaye doing? How are things going with the new addition to your

family!!

I do look forward to grandkids someday, not sure I would be prepared to raise

them myself though. I guess if it becomes necessary you just step up to the

plate and do what it is that needs to be done! We have been thinking about you

guys though and saying many prayers that things are going well.

Smiles and sunshine from Iowa, (where it is bitter cold and yucky right

now!!) We are waiting patiently for spring!!

Diane and Maggie

From: veristroud@... <veristroud@...>

Subject: Diane

Date: Sunday, January 11, 2009, 1:50 PM

Diane,

I read your posts and my heart goes out to you and Maggie every time. There is

not doubt that she is an awesome young lady. By your posts it seems she tackles

most things head on and without a lot of complaint. What is OI, CP & PIDD? Some

days my mind goes into this weird phase and I can not remember all these

things.???

Veri & Jaye 14 poly

May 10, 2009

Hi ,

I am so sorry to have vanished, I honestly think this entire whirlwind of

medical issues has really just done me in....Mentally and Physically!!

Allyson is doing very well with her meds, she actually was asked to join the

varsity Cheer Team for next year, I am not sure she is quite up to that but then

I don't want to discourage her either so if she thinks she can do it then so be

it!!

I don't post much about Ally on Maggie's carepage, she is a very private 15

year old girl and because the carepage is public she would rather everyone not

know her business. I have Maggie's carepage set so that anyone can basically

read it. If there is somehow or some way that we can help someone else who is

searching for answers then it will be well worth the effort it takes to keep it

updated. Maggie also has friends all over the world that are able to keep up

with her this way, it saves a whole lot of emails from my end. (lately I have

been horrible about that, I know!)

I did get a chance to upload a few of Maggie's pictures of her flares and

ulcers, as soon as I have time I will get the rest of them out there. Her new

medicine has shown us a few little things that it can do, sadly though she just

doesn't seem to respond to a whole lot of anything anymore. End result will be a

BMT but we are so hoping that her doctor's will find something else before then

that works.

I am praying that things will slow down enough by the end of this week that I

can get that box shipped out to you. Maggie had a very rough weekend but she

does have an IVIg infusion on Tuesday so maybe that will give her some relief.

How is doing? I have tried to keep up with everyone's posts but I get

behind a lot of the times, with all 4 girls coming and going my house is very

much like a 3 ring circus most days. I thought it would be easier when they all

were older, I am starting to think that I was totally wrong in thinking that.

I hope you had a wonderful Mother's Day! We just went to Grandma's and

cooked out on the grill, Maggie was not feeling well so we came home early but

it was a nice day!

Hugs from Iowa,

Diane, Maggie and Ally

From: J. Cassady <j_cassady25@...>

Subject: Diane

Date: Monday, May 11, 2009, 12:32 AM

It's great to see you on the message board again. I just read Maggie's

carepage. I hope she has a much better week this week. I also hope you had a

great Mother's Day. I hope they are able to figure things out with Maggie.

Please tell her that asks about her all the time. She loves to get her

Maggie updates, but she also asks about Ally. I'm glad to hear she is still

responding well to her meds.

You guys are always in out thoughts and prayers.

Hugs,

and

May 13, 2009

Hey Diane,

I know what you mean. I am still trying to get my own health in order, while

still trying to figure out what exactly is going on with Jayna. Plus battling

the school regarding 's attendance and problems with her dyslexia. We have

also just ordered her a scooter. We have been putting it off for a while, but

finally had to do what was best for her. I hope you get some rest which you

probably very much need.

I am so glad to hear that Allyson is doing so well. Lupus is sometimes so hard

to treat. I'm glad they were able to get her under control so quickly. I did

read that she wants to try out to be a cheerleader. That is so awesome. I wish

her the best with that. is actually going to be the cheer manager since

she can't actually cheer and she is happy with that.

We still don't know what caused her dystonic reaction the day after she got her

16 steroid injections, but we are happy to say she has not had any more

reactions like that since. She does have the toe curling every once in a while,

but not near as bad as when she was rushed to the ER. We are still waiting for

our neuro exam and are also waiting for a sleep study where they will be doing a

full EEG. They will be able to see if she actually had a seizure or not. That

will be done in two weeks.

How did Maggie's IVIg infussion go yesterday? I hope she is feeling a little

better now.

is doing better for the most part. They are thinking they are going to

have to increase her Kineret from one to one and a half or two injections daily.

She is doing better, but is still having a lot of pain and swelling. She just

has such a stubborn form of JRA. And she is having so much trouble in school

right now. They are checking her for learning disabilities. She just feels so

bad and thinks she is so different from everyone else. I don't know what to tell

her. She says she's dumb because she can't remember things like others can and

she just will never be like other kids. I feel so bad for her. Now she will have

the scooter and it's just one more way to make her feel different.

Well, I better get going for now. Can't wait to hear from you again.

Hugs,

and

>

> From: J. Cassady <j_cassady25@...>

> Subject: Diane

>

> Date: Monday, May 11, 2009, 12:32 AM

>

> It's great to see you on the message board again. I just read Maggie's

carepage. I hope she has a much better week this week. I also hope you had a

great Mother's Day. I hope they are able to figure things out with Maggie.

Please tell her that asks about her all the time. She loves to get her

Maggie updates, but she also asks about Ally. I'm glad to hear she is still

responding well to her meds.

>

> You guys are always in out thoughts and prayers.

>

> Hugs,

>

> and

>

May 13, 2009

Hi ,

Maggie was also on Kineret as you know, she also took the two injections

daily. It did seem to work for a little while but then it just stopped. When

this happend is when her doctor decided to switch her to Enbrel, that was a huge

mess and she ended up in the hospital for two weeks on massive doses of

steroids. Not that she reacted to the Enbrel, but because she was apparently

still benefiting from the Kineret to some extent. With Maggie they watch her

Cytokine's instead of CRP or ESR for clues, her Cytokines are extremely high

even with the Rilonacept and Kineret but when they switched her to Enbrel they

were raging!!

We are also working on a motorized scooter for Maggie. She grew up in a

power wheelchair, wanted to switch to a sports lightweight wheelchair but cannot

wheel it herself for very long before she tires out. She does not want to go

back to the huge powerchair but needs something that she can use for long

distances, the manual chair is great for sports and that is about it!!

I am glad to hear that is doing a little better. My 19 year old has

Epilepsy and to me that is just plain scary. She has not had a seizure in over 6

years and no longer needs to take meds for it but there were years and years of

frustration trying to cope for her and us. Naturally this was at it's worst

during her junior high and high school years.

We are still waiting to hear back from Maggie's GI tests that were done last

week. She is hoping to get to review some of the photo's herself (gross kid) but

she is very curious about what is going on inside of her. I am hoping to hear

back from them before the end of the week.

Today Maggie had her appointment with her child psychiatrist. This lady is

wonderful and really helps Maggie work through some of her frustration. To her

she is trapped inside of a body that will not allow her to do the things that

she would love to do. Much like a prisoner. Maggie's problems stem from being so

competative and loving sports so much, to her it isn't always fair. She is in

6th grade doing the work of the average 12th grade student. Has played the volin

since age 2 and plays both acoustic and electric guitar.(when she is able to)

This makes things VERY hard for Allyson who has ADHD and struggles so much in

school. Allyson needs a lot of extra help to get through the acedemic part of

school but she is very social, it sometimes gets her into all kinds of

trouble!! Both are unique in ther own way and great kids. My other two girls

are 19 and 20 and they can be a great help with the two little ones........when

it is convenient for

them!!

Tomorrow we are off to sign my daughter up for college. Both girls

decided to wait a little while before they went to school, now they are both

ready at the same time. I have spent more days in a college (naturally two

different ones) over the last two weeks then I think I did when I was actually

in college myself!! I will be glad when all of the business stuff is done and

they can just start, the paperwork is crazy!

Off to finish my laundry!!

Hugs from Iowa!!

Diane, Maggie and Ally

From: J. Cassady <j_cassady25@...>

Subject: Re: Diane

Date: Thursday, May 14, 2009, 2:39 AM

Hey Diane,

I know what you mean. I am still trying to get my own health in order, while

still trying to figure out what exactly is going on with Jayna. Plus battling

the school regarding 's attendance and problems with her dyslexia. We have

also just ordered her a scooter. We have been putting it off for a while, but

finally had to do what was best for her. I hope you get some rest which you

probably very much need.

I am so glad to hear that Allyson is doing so well. Lupus is sometimes so hard

to treat. I'm glad they were able to get her under control so quickly. I did

read that she wants to try out to be a cheerleader. That is so awesome. I wish

her the best with that. is actually going to be the cheer manager since

she can't actually cheer and she is happy with that.

We still don't know what caused her dystonic reaction the day after she got her

16 steroid injections, but we are happy to say she has not had any more

reactions like that since. She does have the toe curling every once in a while,

but not near as bad as when she was rushed to the ER. We are still waiting for

our neuro exam and are also waiting for a sleep study where they will be doing a

full EEG. They will be able to see if she actually had a seizure or not. That

will be done in two weeks.

How did Maggie's IVIg infussion go yesterday? I hope she is feeling a little

better now.

is doing better for the most part. They are thinking they are going to

have to increase her Kineret from one to one and a half or two injections daily.

She is doing better, but is still having a lot of pain and swelling. She just

has such a stubborn form of JRA. And she is having so much trouble in school

right now. They are checking her for learning disabilities.. She just feels so

bad and thinks she is so different from everyone else. I don't know what to tell

her. She says she's dumb because she can't remember things like others can and

she just will never be like other kids. I feel so bad for her. Now she will have

the scooter and it's just one more way to make her feel different.

Well, I better get going for now. Can't wait to hear from you again.

Hugs,

and

>

> From: J. Cassady <j_cassady25@ ...>

> Subject: Diane

> @group s.com

> Date: Monday, May 11, 2009, 12:32 AM

>

> It's great to see you on the message board again. I just read Maggie's

carepage. I hope she has a much better week this week. I also hope you had a

great Mother's Day. I hope they are able to figure things out with Maggie.

Please tell her that asks about her all the time. She loves to get her

Maggie updates, but she also asks about Ally. I'm glad to hear she is still

responding well to her meds.

>

> You guys are always in out thoughts and prayers.

>

> Hugs,

>

> and

>

May 13, 2009