Update on us

August 18, 2008

I wonder sometimes if my mind tricks me into feeling bad just before my infusion

is due. Actually, I have been feeling bad about the last 2 weeks, coincidentally

enough when I finally got off the prednisone. Taking it again hasn't entered my

mind. Though I hurt, I feel better in other ways being off of the wicked stuff.

Good riddance. I'm determined to just live with things as they are, without

prednisone.

Anyway, infusion is tomorrow and I scheduled it later in the day so I can be

sure and be well hydrated beforehand. I didn't do well last time because I

didn't drink enough fluids prior. So I've got Gatorade and Rain in the fridge

and will get up early to start hydrating. Wish me luck!

Rob had follow up visits with both his kidney doctor and rheumatologist (Dr

Passo, who is leaving Cincinnati Children's). Although he got good reports, it

was upsetting to hear their take on his future. The nephrologist said he was

surprised that Rob was doing so well! He said he expected that he would have had

a return of blood and protein in his urine by now, as those with his kidney

disease usually take a turn for the worse in their 20's and Rob is 19! This

upset me. I was so thankful he is doing so well, but the nephrologist has always

led me to believe that he had a 'mild case' and that he was going to do fine.

Now he's apparently changed his mind and thinks that he will get worse in the

next decade. I was upset, but we've decided to continue to think positively that

Rob is going to do just fine! Rob has promised that if he sees a return of blood

in his urine that he will get in for an appointment right away. Its so hard when

they become 'in charge' of their own health care!

After that we saw Dr Passo. It was a sad visit, because he is the one who

finally correctly diagnosed Rob and got him into medicated remission. If it

weren't for him, Rob also would not have gotten his kidney disorder diagnosed

and gotten on the correct med for that, and it is controlling things so well!

He had a talk with Rob about his desire to join the military. Rob has gone to a

recruiter who claims that he can get 'waivers' for his medical conditions. I am

not sure that will happen. Additionally, I am afraid that Rob will not divulge

everything (he has a couple more conditions than these) and that he will be

caught. That means a dishonorable discharge and possibly jail time! Rob blows

the whole thing off. He just wants to get the military experience so he can move

on after 4 years and go into the career of his choice. He says he has dreamed of

this all his life!

Dr. P. attempted to give Rob a realilty check. He told him he may or may not get

in the military, but if he did, he felt that the basic training would eliminate

him. And he said, even if it didn't , the nature of ankylosing spondylitis is

that you get remissions and exacerbations. That is, he is in medicated remission

right now, but he could get a flare. And when that happens, he needs to take

action immediately so he doesn't get into the shape he was in when first

diagnosed (couldn't walk and couldn't function). While the doctor was talking to

him, I had to hold back tears. I did cry when we left the office. As you might

suspect, we are totally against him going in the military for obvious reasons,

but when I was watching him I saw how much he truly desires to follow his

lifelong dream. And it was hard to watch him absorb the reasons why he

shouldn't. Still, he is encouraged by the good reports from both the doctors and

is very happy about that. He said afterwards, Mom, I am GOING TO MAKE IT into

the military! Of course, whatever he chooses to do in life his Dad and I will

support his decisions 100%. Its quite a position to be in, not wanting your son

to do something to risk his health and life, yet, wanting him to be happy in

what he chooses and dreams of doing.

Well, that is about it. I have infusion tomorrow, take our new little kitten

Grimm to the vet on Tuesday (don't ask, Rob named him!)

Hope all have pain free nights and days ahead! You guys are the best!

and Rob 19 JAS

August 18, 2008

Hi ,

I think you might be under enough stress right now to Qualify feeling bad! I

cannot imagine trying to consume what you are trying to for yourself and your

son and not be stressed!

I cannot tell you that I understand how you are feeling, but please know we

are praying right along with you that somehow, someway, Rob will find peace with

whatever final decision is made, if he should proceed with this Military career.

I think the hardest thing we do as a parent is to let our children make

choice's that we do not agree with, support them in their choice's while not

letting it rip our hearts out in the process!

On lot lower level,Maggie has always loved hockey. The AHL team here in the

Quad Cities has kind of taken her under their wing from about the last 5 years.

Two years ago while walking into a game they had tables set up for all of the

kids with different career choices and one of the staff members came up to her

and said " What do you want to be when you grow up Maggie?'

Mind you, Maggie has been sick her whole life.She never said a word to me all

the way to her seats. When we sat down she asked me.... " Am I going to get to

grow up? " (UGH! stab in the heart moment!)

I answered her trying to be very diplomatic because I know she has Primary

Immune Deficiency NOW,but I didn't know that then.She wasn't getting IVIg and

she was very very sick all of the time. I told her if she set her mind to

something, I felt she could do anything she wanted to.....if she wanted it bad

enough. (it broke my heart!)

But, because Maggie ONLY knows how to dream BIG, she turned around in her

chair, locked her wheels and said " OH GOOD, then I think I want to be a GOALIE! "

I choked on my soda!

Jeepers! This kid is going to kill me off one way or another! If for no other

reason, she has OI or brittle bones, I knew from then on it was okay for her to

dream. As reality has come right along with her age and diagnosis's, she knows

that will never be an option for her. But it wasn't because I said she couldn't,

she worked it out on her own.

Hang in there! Maybe with time he will change his mind, or find a sweet young

girl to help make him switch gears a little.

My oldest daughter Caitlyn's boyfriend is in Bagdad. He is a Military Police

officer and shuttles prisoners from place to place in the middle of the night.

She didn't start dating him until he was back on leave, if he had met her first,

he claims he never would have joined the army, he would have wanted to stay

close to home. He just went back over until October and then will be back in

the states, she worries about him constantly!

Hugs from Iowa!!

Good luck tomorrow!

Diane and Maggie age 11(OI,CP,Systemic JIA,Uveitis, PIDD)

> From: and Schulz <snooksmama@...>

> Subject: Update on us

>

> Date: Monday, August 18, 2008, 2:27 AM

> I wonder sometimes if my mind tricks me into feeling bad

> just before my infusion is due. Actually, I have been

> feeling bad about the last 2 weeks, coincidentally enough

> when I finally got off the prednisone. Taking it again

> hasn't entered my mind. Though I hurt, I feel better in

> other ways being off of the wicked stuff. Good riddance.

> I'm determined to just live with things as they are,

> without prednisone.

> Anyway, infusion is tomorrow and I scheduled it later in

> the day so I can be sure and be well hydrated beforehand. I

> didn't do well last time because I didn't drink

> enough fluids prior. So I've got Gatorade and Rain in

> the fridge and will get up early to start hydrating. Wish me

> luck!

>

> Rob had follow up visits with both his kidney doctor and

> rheumatologist (Dr Passo, who is leaving Cincinnati

> Children's). Although he got good reports, it was

> upsetting to hear their take on his future. The nephrologist

> said he was surprised that Rob was doing so well! He said he

> expected that he would have had a return of blood and

> protein in his urine by now, as those with his kidney

> disease usually take a turn for the worse in their 20's

> and Rob is 19! This upset me. I was so thankful he is doing

> so well, but the nephrologist has always led me to believe

> that he had a 'mild case' and that he was going to

> do fine. Now he's apparently changed his mind and thinks

> that he will get worse in the next decade. I was upset, but

> we've decided to continue to think positively that Rob

> is going to do just fine! Rob has promised that if he sees a

> return of blood in his urine that he will get in for an

> appointment right away. Its so hard when they become 'in

> charge' of their own health care!

>

> After that we saw Dr Passo. It was a sad visit, because he

> is the one who finally correctly diagnosed Rob and got him

> into medicated remission. If it weren't for him, Rob

> also would not have gotten his kidney disorder diagnosed and

> gotten on the correct med for that, and it is controlling

> things so well!

> He had a talk with Rob about his desire to join the

> military. Rob has gone to a recruiter who claims that he can

> get 'waivers' for his medical conditions. I am not

> sure that will happen. Additionally, I am afraid that Rob

> will not divulge everything (he has a couple more conditions

> than these) and that he will be caught. That means a

> dishonorable discharge and possibly jail time! Rob blows the

> whole thing off. He just wants to get the military

> experience so he can move on after 4 years and go into the

> career of his choice. He says he has dreamed of this all his

> life!

> Dr. P. attempted to give Rob a realilty check. He told him

> he may or may not get in the military, but if he did, he

> felt that the basic training would eliminate him. And he

> said, even if it didn't , the nature of ankylosing

> spondylitis is that you get remissions and exacerbations.

> That is, he is in medicated remission right now, but he

> could get a flare. And when that happens, he needs to take

> action immediately so he doesn't get into the shape he

> was in when first diagnosed (couldn't walk and

> couldn't function). While the doctor was talking to him,

> I had to hold back tears. I did cry when we left the office.

> As you might suspect, we are totally against him going in

> the military for obvious reasons, but when I was watching

> him I saw how much he truly desires to follow his lifelong

> dream. And it was hard to watch him absorb the reasons why

> he shouldn't. Still, he is encouraged by the good

> reports from both the doctors and is very happy about that.

> He said afterwards, Mom, I am GOING TO MAKE IT into the

> military! Of course, whatever he chooses to do in life his

> Dad and I will support his decisions 100%. Its quite a

> position to be in, not wanting your son to do something to

> risk his health and life, yet, wanting him to be happy in

> what he chooses and dreams of doing.

> Well, that is about it. I have infusion tomorrow, take our

> new little kitten Grimm to the vet on Tuesday (don't

> ask, Rob named him!)

> Hope all have pain free nights and days ahead! You guys are

> the best!

> and Rob 19 JAS

>

August 19, 2008

Hi, . Thanks for the update. I hope your infusion went well. I

always talk with my hubby about what you are going through, as he

struggles with his arthritis. He is reluctant to move on to the

biologics as he does not want to do injections/infusions, so I try to

show him that they may help. I'll be praying you feel good with this

latest infusion.

I know how you feel with Rob. I went through it with with the

Marines, but the recruiter told him right up front that they would not

take him. So he shifted his plans. Just like he had to with baseball

when we could not get the arthritis under control and by the time we

did, he could not make the high school team. He shifted his plans. We

even went the other day to a local college and planning on

enrolling again! So that is a light at the end of the tunnel for me (you

know how I feel about getting him back in school). I hope that Rob is

able to get into the military as he plans. If not, he will learn to

shift his dream and find another. I am sure of it. Unfortunately for our

kids with these chronic illnesses it is a fact of life. It stinks! But

they seem to deal with it and move on. I'll keep praying that Rob does

well and he can do what he wants with his future.

Hope your new kitty is well (Grimm? as in the fairy tales? Or is it some

other reference? interesting), Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of and Schulz

Sent: Sunday, August 17, 2008 9:27 PM

Subject: Update on us

I wonder sometimes if my mind tricks me into feeling bad just before my

infusion is due. Actually, I have been feeling bad about the last 2

weeks, coincidentally enough when I finally got off the prednisone.

Taking it again hasn't entered my mind. Though I hurt, I feel better in

other ways being off of the wicked stuff. Good riddance. I'm determined

to just live with things as they are, without prednisone.

Anyway, infusion is tomorrow and I scheduled it later in the day so I

can be sure and be well hydrated beforehand. I didn't do well last time

because I didn't drink enough fluids prior. So I've got Gatorade and

Rain in the fridge and will get up early to start hydrating. Wish me

luck!

Rob had follow up visits with both his kidney doctor and rheumatologist

(Dr Passo, who is leaving Cincinnati Children's). Although he got good

reports, it was upsetting to hear their take on his future. The

nephrologist said he was surprised that Rob was doing so well! He said

he expected that he would have had a return of blood and protein in his

urine by now, as those with his kidney disease usually take a turn for

the worse in their 20's and Rob is 19! This upset me. I was so thankful

he is doing so well, but the nephrologist has always led me to believe

that he had a 'mild case' and that he was going to do fine. Now he's

apparently changed his mind and thinks that he will get worse in the

next decade. I was upset, but we've decided to continue to think

positively that Rob is going to do just fine! Rob has promised that if

he sees a return of blood in his urine that he will get in for an

appointment right away. Its so hard when they become 'in charge' of

their own health care!

After that we saw Dr Passo. It was a sad visit, because he is the one

who finally correctly diagnosed Rob and got him into medicated

remission. If it weren't for him, Rob also would not have gotten his

kidney disorder diagnosed and gotten on the correct med for that, and it

is controlling things so well!

He had a talk with Rob about his desire to join the military. Rob has

gone to a recruiter who claims that he can get 'waivers' for his medical

conditions. I am not sure that will happen. Additionally, I am afraid

that Rob will not divulge everything (he has a couple more conditions

than these) and that he will be caught. That means a dishonorable

discharge and possibly jail time! Rob blows the whole thing off. He just

wants to get the military experience so he can move on after 4 years and

go into the career of his choice. He says he has dreamed of this all his

life!

Dr. P. attempted to give Rob a realilty check. He told him he may or may

not get in the military, but if he did, he felt that the basic training

would eliminate him. And he said, even if it didn't , the nature of

ankylosing spondylitis is that you get remissions and exacerbations.

That is, he is in medicated remission right now, but he could get a

flare. And when that happens, he needs to take action immediately so he

doesn't get into the shape he was in when first diagnosed (couldn't walk

and couldn't function). While the doctor was talking to him, I had to

hold back tears. I did cry when we left the office. As you might

suspect, we are totally against him going in the military for obvious

reasons, but when I was watching him I saw how much he truly desires to

follow his lifelong dream. And it was hard to watch him absorb the

reasons why he shouldn't. Still, he is encouraged by the good reports

from both the doctors and is very happy about that. He said afterwards,

Mom, I am GOING TO MAKE IT into the military! Of course, whatever he

chooses to do in life his Dad and I will support his decisions 100%. Its

quite a position to be in, not wanting your son to do something to risk

his health and life, yet, wanting him to be happy in what he chooses and

dreams of doing.

Well, that is about it. I have infusion tomorrow, take our new little

kitten Grimm to the vet on Tuesday (don't ask, Rob named him!)

Hope all have pain free nights and days ahead! You guys are the best!

and Rob 19 JAS

August 19, 2008

Hi :

Hope you are feeling well after your infusion and you are feeling better.

Glad Rob had good visits with the doctors (even though the one is leaving).

Wouldn't it be nice for one of our kids to beat the odds and really get what

they want? I know getting what he wants is scary for mom. Our very good

friend's son is being deployed to Afghanistan October 6 and that scares me a

lot. He's a really good kid, but he's an MP so that is pretty dangerous.

Where did the the name Grimm come from, is it from the cartoon or something

else? Hope kitty is doing well. Millie is doing great. We had her declawed 2

weeks ago and she is now back to her hyper self.

Beth & Hannah, 11, unspecified arthritis w/hypermobility; asthma; gerd;

migraines; ulcers

Sending prayers & happy thoughts,

Beth