Re: Hello from Val

[Guest guest]

Oh Val, I had to laugh at your systematic addressing of everyone that you humanly could in one well thought out and aligned email LOL! I'm so glad I can make you laugh and I know the feeling of well I'll just come and keep you company LOL! Now will you come to Louisville and organize me like that ?????? LOL I might even pay ya !!!!!! Well I know a move is hard but I bet your fretting more about the change than Robbie is ..after all he has JRA and already knows how to go with the flow. So don't overthink things and I'm sure that the new school will be great!!! Got to do dinner so I'm outta here :):)Tree :):) oops forgot the HUGZ!!!! Hello from Val Hi all! I have been very busy at work - and Rob has been sick some this week so I have over 366 emails to get through and just no time. I wanted to say Hi and let all of you know that you have been on my mind, and instead of attempting to respond to a lot of the emails, try to put a quick note here (but we all know how I can ramble!) , I was glad to hear that Rob's injection went well, and seemed to make such a big difference! I hope that it continues to do well, and he gets so relief from his other pain sites. Kim, you have had a rough time! I know how tiring staying in the hospital with a sick child can be - as do all of us, try to get some rest, I hope Logan continues to improve his fluid intake. , your post describing the systemic rash was great - as was your post regarding this list. I do remember you and Skylar from before, I am sorry that Skylar is flaring after doing so well for so long. We almost had Robbie nearly weaned from his prednisolone in November when he had a bad flare and ended up in the hospital then and again just before Christmas. He is doing pretty well now, and we are in the process of tapering the dose, but he had a 103.2 axillary temp on tuesday, along with joint pain in multiple joints (no rash - but he is usually well into a flare before we notice a rash) but doing well today - still some fatigue. Cas, glad to hear the steriods are helping Tas - sorry to hear about her foot - hope everything clears up quickly without the need for IV meds. Our little Princess is long due for a break. e, Joe sounds like such a clear headed mature young lady, I would think that this challenge would help her continue to feel "up to the challenge" so to speak, in light of the other things she has had to let go of. Rusty, two steak dinners, not just two steaks? LOL. What can I say, where do you put it all? Carol, it sounds as if you are doing all the right things for - she gets the ability to look at things from a positive perspective from somewhere! Becki, try not to worry about a flare, just enjoy the now. It is so hard waiting for the shoe to drop. I am so glad that is doing so well. Tree, your posts are always cheerful, inspiring and sometimes just downright funny. I loved the story of the recliner in the laundry room (hmmm, my laundry room isn't big enough.) - I did put a recliner in my room in our new house, it didn't really fit well in the living room - and it is nice to have a comfortable place to relax, when I don't want to lay down and to be away from all the noise and toys (lol) - though I don't escape for more than a few minutes before in comes Robbie, "what are you doing in here Mom, you're just sitting there. I think I'll come keep you company." And though, I'd like a few more minutes to myself - what great company he is. Gotta run guys - I will catch up some day - that's what I keep telling myself. Have a great evening!ValRob's Mom (5,systemic)

[Guest guest]

Hi Val,

Thank you for the update.Sounds like Robbie is feeling better and not letting

his challanges get in the way of having fun.What a trooper,like all these

angels.

Wow!!! down to under 150 e-mails.I remember way back when you were over the

300 mark and you couldn't receive anymore.

Let us know what happens at the next rheumy appointment.I hope all goes well

and you have hopeful news to tell.

Love and prayers

Becki and 5 systemic

PS)Val ,thank you for being my best friend and supporter when Robbie and

were on the same path.We had alot of great talks.Just know I am here if

you

need me.

[Guest guest]

Val:

I am so glad to hear Robbie is doing well. I got to see some more

pictures of him this week, Donna Fox has some in the FACES scrapbook, and

I so enjoyed getting to see you guys, even if just in pictures! Robbie's

personality sure does shine!!

I'll be anxious to hear about the follow up appointment tomorrow, and if

they are planning any med changes. I am also so glad that you are feeling

better now, Val, it sure has been a rough year for you. Take care! And

hope to see you in DC!!

Love,

and Rob 15 Spondy

On Tue, 25 May 2004 16:29:32 -0400 carneyval@... writes:

Hello everyone - I have gotten my messages down to 126 - pretty good for

me! I wanted everyone to know that I am out of my blue mood & back to my

normal self (whatever that means). And I wanted to thank for the

words of encouragement! She faces so much with big Rob's challenges -

yet never fails to offer so much to others!

Robbie is doing well & enjoying his baseball games, though he does

complain of knee and hand pain the evening after - and the next morning -

I am letting him determine if he can play (short of seeing obvious signs

that require me to step in and say no). He got hit in the shoulder with

a ball the other day - and recovered so quickly, retrieved the ball and

got the guy out on first base that I had to stop myself from running out

there and bringing him off the field. He was rubbing his shoulder the

rest of the game - but when he came in from the field when his team was

at bat he glowed " Did you see that Mom, I gave him an out, even when I

got hit. " (He doesn't " get " people out, when Robbie tells it, he " gives "

them an out- I don't know if he is just generous or grammatically

superior.)LOL.

Rob is continuing to improve - he has some of the Cushings tell tale

signs - but not as severely as in the past. (I guess that's the

difference between 33mg of Prednisolone and 18mg). He has a follow up

appt tomorrow - and I never know what to expect. He had his blood drawn

yesterday - and I looked for results - everything isn't back yet - but

his wbc and platelets are still elevated, but his sed rate made a more

significant drop than last month - so now it has come down to 27. School

is still going well - the occupational therapist checked in on him and

his writing - and seems to think all is fine there, and his teacher is

keeping me posted on any pain complaints or problems at school. (He'll

often come home telling me that he has had pain during the day, but

didn't say anything because it wasn't too bad. back to the I'm ok

thing.) His teacher says he continues to do great in school & that he

constantly cracks her up - because he always has something to say & his

vocabulary is amazing.

We are surviving the cicadas -though they are everywhere - Robbie came in

last evening to tell me that he found the " exoskeleton of a cicada by my

swinge set, and I want to take it to school for show and tell, but you

have to pick it up for me Mom, because it looks disgusting. " That's my

boy.

, in an earlier post you wanted a picture of Rob on his wheeled

mode of travel from the Arthritis Walk - and I think you misread what I

wrote (or I mistyped!) He rode an umbrella stroller that I borrowed, not

an umbrella stand! I have to admit I laughed out loud - now that would

have been a picture to have. Anyway - an umbrella stroller is a smaller

stroller than many you see out and about, it folds up and supposedly

looks like an umbrella when folded. I think it mainly got it's name

because it has 2 curved handles that look like an umbrella handle - and

folds up more narrow than a standard stroller that folds wider and

flatter. Anyway, I did take pictures and I will be glad to send them

when I get them developed.

Well, I have to finish up here and go get my boy - I hope all of you are

doing well! Thanks for being there!

Val

Rob's Mom (6,systemic)