Helen

[Guest guest]

I don't know how it did it... But the Dr. took a while to figure that one out... I always had low blood pressurs, but it would get dangerously low and I would pass out from it... When he found out I drank almost a gallon of tea a day, He said that was it!!! So I went completely off it and my B/P went up... Now I have high blood pressure... Go figure... (I didn't like the taste of our iron water so I always used the tea ) )

((( Huggable Hugs )))

Helen

Hello there!

How does tea lower your blood pressure? I drink decaf if that makes any difference?!

[Guest guest]

Hi ,

Have actually thought of doing that ) Then maybe I wouldn't have to take the meds!!!

((( Thoughtful Hugs )))

Helen

Sounds like maybe you should start drinking tea again! LOL Maybe it will help get your blood pressure down a bit.

[Guest guest]

Hi Helen...

You are such a living doll!I Thanks you for your very compassionate letter. I'm sorry it took me a bit to reply....I'm slow on the go but I'm still here LOL. I live in the wonderful HOT, humid state of Florida. Actually, I don't mind it here... (I think I've finally acclimated...been here for almost 10 years-ha) I just mind being sick! But ciest la vie right? I could be in Hawaii and I'd feel the same way.. except maybe not as humid? Anyway... we had a better air quality day today and I felt healthier as a result. I actually could eat a great meal without struggling! Boy we take things for granted don't we? So I reveled in feeling better .

The last two previous years it rained like there was no tomorrow. I was sick as a dog from all the rain! This year it got too dry and apparently my body didn't like that either and then the asthma comes. Geez.....

How is the weather by you now did it let up? It's the truth ..excessess of anything are not appreciated right?

I think I was doing very well psychologically until this summer. When the asthma kicked in it brought back a lot of old fears. Hopefully when I pull up again with my heath so will some of the self confidence and not feeling quite so blue. Scared the heck out of me! The plus side of not breathing well is how wonderful it is for your waistline. . I lost 10 lbs LOL. Husband says I look great.. isn't this wonderful but I do need to breathe too it would help. I'm trying to make some progress on my indoor environment to make my reactions less and my house healthier for me...so with progress there I should find some relief also.

You're so right about all of us having our dreams. It's hard to fathom that this might be the best time of my life so I better make the best of it and snap out of where I am at. My dad has AD and I am his POA, etc. I love my father like you can't believe. I know that every moment of every day we spend together is especially precious now because in a year he might not know me anymore. I'm sure this has a greater affect on my psyche than I realize.... yes I get upset but perhaps also knowing what's happening to him and his ticking clock has made me more contemplative about my own life and losses. I know this is true. I had to do some analyzing of why I've been tripping down memory lane in my own life .. (not healthy when you do it with regret for what is no more of course). I need to "get my "head together" and be grateful I am allowed to have this time with him.. and I am for that. Healing as you know is a funny thing... it has to take it's time to go through the stages. ..sometimes over again when other happenings come into our world.

Sending some drier days and sunshine your way... Many Hugs.. Ariadne

From: angelbear1129@...Subject: Re: Re Ariadne..Hi Ariadne, I'm sorry that you are having another rough day... ( What State did you say you live in??? The weather has been something else this year... We have had over 2 1/2 inches of rain in the last two days here in NW Ohio, their saying that we have another 1 - 2 inches coming in tomorrow... How long have you been suffering from your asthma / illness/es??? You will keep right on going back and forth in all the stages, but you will understand them more and more as time goes on... We All get very down at times, not understanding." WHY ME???" Its just a Normal part of life... None of us ever expected to go through life like this... We All had our Dreams and I can guarantee, NONE of us had illnesses in our future plans ) But for some reason, we are the ones that have to go through our lives this way, so we have to make the best of it that we can ) Its Very, Very hard at times, but take One day at a time and it works a lot better for us... I too have a very loving and helpful husband, but I too feel all alone at times, this too is all normal... Yes, they are there for us, but do they really understand what we are going through??? No, ( They Do try their best and do get aggravated at us at times, (but we are very critical at times, no matter how hard they try ( at least I am) ) Keep venting away, it does help to have an outlet to let your burdens go...((( Understanding Hugs )))Helen

[Guest guest]

Helen

I can't imagine how busy you must be with the children and working, to

boot.

Thanks for your thoughts and prayers, we truly appreciate it.

How is Nick doing these days??

and Rob 15 Spondy

On Tue, 03 Aug 2004 00:33:19 -0000 " hburger64 " <hburger64@...>

writes:

HI ...

Sorry to be so late replying.. working weekends cuts into my online

time, darn it!!!

I was so saddened to read of Robs continuing renal issues. I know

this must be very worrying for the both of you. I cant offer any

advice but I do want you to know that i will keep you both in my

prayers for a good outcome from the biopsy.

Keep your chin up....

thinking of you...

Helen and (6,systemic)

[Guest guest]

Helen:

Thanks for your support. I am starting to get back to my old self. Its

been a rough couple of weeks.

and Rob 15 Spondy

On Wed, 01 Sep 2004 14:24:39 -0000 " hburger64 " <hburger64@...>

writes:

-..

I know im kinda late, but i wanted to let you know im sorry to read

of Robs aditional dx. I havent looked what this alports is all about

yet. But i hope that the medciation keeps it under control and you

are able to find some peace. I know this must be quite the blow. Its

never easy hearing theres something wrong with our children

thinking of you both....

hugs Helen and (7,systemic)

-- In , snooksmama@j... wrote:

> Rob had his followup today to receive the renal biopsy results.

> The nephrologist thinks Rob has Alports syndrome. If you look it

up on

> the Internet it can be quite frightening. Some sites I read said it

> always leads to renal failure in males.

> Today the nephrologist was trying to be as reassuring and upbeat as

> possible. I was having a hard time deciding whether he was just

trying to

> give us hope...I don't know. Bottom line: Rob's BUN and creatinine

are

> NORMAL. That is awesome news. The bad news, there is irregularity

of his

> glomerular basement membrane. Instead of being smooth, there are

> lamellations or cracks in it. This is indicative of Alports.

Today, his

> urine had gross hematuria/visibly bloody. 2+ blood in his urine,

protein

> and casts. The protein is the bad part. The protein is what causes

the

> kidney damage. So we are going to treat that with Cozaar. It will

lower

> the protein, the blood pressure (Robs is borderline high and that

is a

> sign of kidney disease) and it can actually REBUILD the damaged

areas of

> kidney! So this is wonderful news. Years ago they had nothing to

treat

> it. Alports is incurable but if you can control the protein

spillage you

> can control the disease.

> The only way to really diagnose this is with genetic testing that

costs

> $3000-4000 dollars and of course insurance wont' pay for it

because it is

> not always reliable. So we are going on the biopsy results that he

does

> have it.

> He said that there are many different variations of Alports and

some are

> severe, some are not. Some people lose their hearing and sight.

They will

> keep a watch on that. There is some genetic research and they are

hoping

> someday for gene therapy. The thing is, it is relatively rare,

affects

> only 2 people in 20,000. Some can start out mild like Robs and

stay that

> way for years, then go to renal failure. Some are very aggressive

right

> away. So he will have to be very carefully watched. Labs to be

repeated

> in 2 weeks and he wants to see Rob in 2 months, that will be the

same day

> we see rheumatology.

> Rob although he was in the room didn't really get all that we were

> talking about. Dr. D. was very careful around Rob about the

wording he

> used. The words end stage renal disease, dialysis etc were never

> mentioned. Rob as always was still the happy go lucky guy and he

had very

> few questions. I guess little by little he will come to know what

all

> this means. I am just worried about his eyesight and hearing. Dr. D

> didn't mention it, and it was impossible to ask with Rob being in

the

> room, but I think I am going to get him a hearing test just as a

baseline

> so we will know if there are changes. I am going to get the

pediatrician

> to order it.

> Dr. D treats many Alports kids apparently so we are in the best

place. He

> was upbeat and reassuring. This is just very hard to hear and to

take.

> Thanks you guys for all your support and prayers. Please continue

to pray

> for Rob.

> and Rob 15 Spondy

>

>

[Guest guest]

Helen:

Thanks for all your well wishes. I hope that Nick is feeling better

tonight...sounds like a lot of our kids are starting to flare

again...fall weather coming on??

We rode bikes again tonight!!

and Rob 15 Spondy

On Thu, 16 Sep 2004 17:07:00 -0000 " hburger64 " <hburger64@...>

writes:

..

O... what wonderful news that Robs pain level has gone down..

im so happy for him and for you. Its amazing to see your child doing

the things that other kids take for granted. It always brings a lump

to my throat.

I pray that tha alports doesn nothning and is controlled by meds to

a LONG LONG LONG time!!

hugs to you all

Helen and (7,systemic)

> Ok, here goes...

> Rob's pain level is continuing to drop, his swelling in his knees

is

> almost non-existent, his energy level is increasing, and he (or

should I

> say we) are riding bikes daily! Yes, he says its time I got in

shape

> since my RA is in medicated remission It is such a joy to see

him

> emerging from his pain. I didn't realize how UN-animated and

subdued (at

> least for Rob) that my child was, and how little activity he did,

until

> Enbrel started working.

> He rated his pain yesterday as a '3' (down from 4 or 5 last week),

the

> usual hips, knees, and back pain. We realize he may never get total

> relief, and that damage has probably already been done, but

WOW...how

> awesome to see him obviously feeling and doing soooo much better.

> Thanks to all you guys for all your support!

> Oh, I did get final biopsy results from Rob's nephrologist. One of

the

> findings clearly points to Alports, but some of the others don't.

So they

> are still about 95% sure. They are talking about doing some further

> testing. The nephrologist is also going to consult yet another

expert in

> the field about Rob's case, and I faxed him a release form today

so he

> can discuss the case. Rob is tolerating the Cozaar just fine, and

we will

> go back in October to recheck his urine and see if it is making any

> difference. We are just hoping that if he goes into renal failure,

that

> it is many years before it happens. We have hope!

> and Rob 15 Spondy

[Guest guest]

Hi ,

Sorry already got the shot this afternoon, before reading your email... I had to fill out a paper and on it, it asks if your ill today and i marked it yes, but the lady took the paper, tossed it over on the pile and gave me my shot, she never even looked at it... I'm doing fine tonight... I didn't have a fever, I usually don't carry a fever for anything, but if I do get a fever, Heaven help me... My temp is usually around 97... snot is yellowish green, not the gray gr any more... Thanks for caring, means a lot... You keep us posted about ya when ya can, know its hectic for ya...

((( Love and Hugs )))

Helen

Dear Helen,

I just read that you are getting a flu shot friday- tomorrow- and that you are sick....

You know you shouldnt take it when you're sick. I know how hard they are to get this year, but... If it was just a cold, in a regular person, it might pass before the flu shot got to you.... but it might just make You sick as hell. You are special.

Can you really take it easy for several days after??? I mean really- not workaholic easy.

Please take your temp first. Any fever, dont do it. Green snot- dont do it.

Love & miss ya,

(still trying to catch up in short spurts, please let me know how you're doing)

[Guest guest]

HI HELEN

THANK YOU FOR THE SWEET NOTES I REALLY DO APPRECIATE THEM AND YEAH FOR THE NEXT FEW WEEKS I AM WORKING TO MAKE AFEW MORE HUNDRED BUCKS TO SOCK AWAY BEFORE I QUIT I AM VERY READY OT QUIT THE HOURS ARE TOO LONG AND WE HAVE NOT BEEN THAT BUSY AT THE LANCOME COUNTER AND THAT IS HELL TO JUST STAND AROUND MAKES ME CRAZY I DO PRETTY WELL IF I AM KEPT BUSY THE WHOLE TIME IM THERE LAST WEEK THEY GAVE ME SOME SHIT ABOUT MISSING A COUPLE OF DAYS AND SOME TARDIES THEY CAN GO SCREW THEMSELVES THEY HAVE NO CLUE AS TO WHAT I GO THROUGH JUST TO GET THERE THE DAYS I DO WORK AND SINCE MID AUGUST IVE MISSED TWO DAYS!!! BIG DEAL.

i WILL QUIT SOON AND BE VERY RELIEVED!!!!

COLLEEN

[Guest guest]

No worries Helen! The cold just causes more pain and neck spasms. I

can cope with it.

Lee

You should see my cocker spaniel, bundled in a blanket in his

basket!!

> Thanks Lee,

> How are you doing??? Your worrying me!!!

> Love ya

> Helen

[Guest guest]

Hi Lee,

I would presume if your coughing it would cause you a lot of pain ( That would be cute to see...

You get better and stay bundled yourself!!!

((( Love and Get Well Hugs )))

Helen

No worries Helen! The cold just causes more pain and neck spasms. I can cope with it.LeeYou should see my cocker spaniel, bundled in a blanket in his basket!!

[Guest guest]

Helen:

First of all, so GLAD to hear that Nick is feeling better! I so hope that this

trend continues!!

I'm glad that the story brought a smile, bless your heart, sick with a virus on

Christmas. I hope that you are feeling better and can enjoy what's left of the

Holiday!!

Yes, I think all of us could make many wishes for cures for a variety of

ailments in the coming years. It is just not fair for children to suffer so.

Take care.

and Rob 15 Spondy

-A blessing indeed... your miracle put a smile on my face tonight..

Im feeling pretty puny, I have stomach flu and have been laying

around all day feeling sorry for myself.

Wishing you a wonderful 2005 and I 2nd your wish for dreams of cures

for all childhood illnesses that take our childrens inocence away.

Hugs Helen and (7,systemic)

[Guest guest]

--..

That was totally fine, i hope that Nick can help in even if just in

a little way.

I read Aundreas mail to Nick ( it was soooo sweet) and then Nick

asked me how old she was, so I told him 9 and then showed him her

picture. I think it helped him see who he was " talking to "

I hope this message helps..Im sure she will do fine with the shot

and wont even bat an eyelid once shes use to it.

How are you doing ???

Hugs Helen and (7,systemic)

- In , " sonia1md " <sonia1md@y...> wrote:

>

> I told Aundrea about the mtx shots tonight. She started crying

and

> said she would rather throw up every week than to take a shot.

But

> the more we talked the calmer she got. I told her a lot about

Nick

> and how he now gives the shots to himself. This really intrigued

> her and she was done talking to me and said " I want to talk to

Nick " .

>

> So anyway she typed an email to Nick and I forwarded it to your

> personal email. I hope that was o.k.

>

> If Nick would be willing to reply to her I would greatly

appreciate

> it.

>

> Thanks Helen,

>

> (Aundrea 9 systemic)

[Guest guest]

Helen:

My deepest sympathy to you and your family. Drive safely.

and Rob 15 Spondy

On Thu, 17 Mar 2005 14:39:08 -0000 " hburger64 " <hburger64@...>

writes:

-Hi Stacia..

IM sorry I have not responded before now, we have had a death in the

family and have been busy driving 2 hours north for the wake etc.

Today is the funeral so we have to head out again in a few moments.

I did not want you to think i was ignoring your post.

Yeap, im from England, born and bred, All my family is still there.

I moved to the US when i married my husband back in 1988.

Off the bat, the places I would recommend seeing outside of London

would be places like Strafford upon Avon ( Shakespeares birthplace)

its beautiful around there and I can imagine in spring it will be

just lovely with all the spring flowers in bloom. Theres also

Stonehenge that my kids just LOVED when we were over there in 03. I

like to stay away from London...just too busy, commercialized and

touristy. I love remote country villages.

As to Lloyds of London, ive never been, its where all the insurance

business takes place and im sure It would be more business attire.

I have to run, but if I think of anything else while im driving

north ill drop you a note when we get back, it might not be till

tomorrow though as I dont think we will be back till late tonight.

Have a super time!!!!! im jealous, i do miss home

sometimes...especially the family and the food!!!!!

Hugs Helen and (7,systemic)

-- In , " staciar101 " <staciar@c...> wrote:

>

> Hi Helen,

>

> You're from Britain, right? I will be going there 3/18 - 3/27. I

> will be visiting a friend who is attending Oxford (I'm so proud of

> her for getting in). She is currently staying in Iffley and

that's

> where we'll be.

>

> I land this Saturday and will probably head straight " home " to

> sleep. We'll probably go into London for a couple days during the

> week. We'll hook up with another friend in London who will show

us

> the " off the beaten path " things there. I have already done many

of

> the " beaten path " things in London, but not outside of London.

Any

> suggestions for things to do other than in London?

>

> Do you have any suggestions for any " must see or do " things in

> England? Just looking for a native's perspective, if you have a

> moment.

>

> Our London friend wants to show us Lloys's of London, but I know

we

> have to " dress up " for that (I wasn't planning on packing anything

> other than very casual). Is that worth the tour or what exactly

is

> that? Is there an analogy for that in the US?

>

> Thanks so much,

>

> Stacia

[Guest guest]

suenesci@...

suenesci

at arthritis.org

that's weird it came across that way

I'll get the needles out to you soon. I found a small box to put them in,

but I'm out of packing tape...I'll try to get some over the weekend

I've got 2 different kinds...for some reason, I'd filled two different

RX's at one point..No sense them just sitting in the closet gathering

dust! I'm glad that you can use them.

and Rob 16 Spondy

On Thu, 05 May 2005 18:03:43 -0000 " hburger64 " <hburger64@...>

writes:

-Thanks .. I only got the 1st half of the address what comes

after the @

thanks Helen and Nichoals (7,systemic)

-- In , H Schulz <snooksmama@j...>

wrote:

> Just email Sue Nesci ( snesci@a... ) and tell her what ages,

> and she'll give you the scoop. I can't figure out why they don't

publish

> these things...this was one of the first questions I had, and

obviously

> you, too.

> and Rob 16 Spondy

>

> On Thu, 05 May 2005 14:05:55 -0000 " hburger64 " <hburger64@h...>

> writes:

> -maria...

>

> Do they publish what each of the age groups will be doing????

>

> Also, im bringing Nick whos 7 and whos 6 will they be in the

> same group??? or do they separate the kids with JRA and the

> siblings??

>

> hugs Helen and (7,systemic)

>

> -- In , H Schulz <snooksmama@j...>

> wrote:

> > Thought you guys would like to see what is in store for the 16

and

> 17

> > year olds at AJAO. Rob will be excited!!

> > and Rob 16 Spondy

> >

> > ----- Forwarded Message -----

> > From: " Nesci, Sue " <SNesci@a...>

> > " H Schulz " <snooksmama@j...>

> > Date: Wed, 4 May 2005 13:42:42 -0400

> > Subject: RE: AJAO2005 National Conference brochure-pdf

> > Message-ID:

> > <C1C6BF7A80DB8849AED03CE3F634A59B36C8E2@m... rg>

> >

> > :

> >

> > Yes. He will be in a group with 16-17 year olds and among the

> things

> > this group

> > will do is visit the Big Nazo workshop, which is two blocks from

> the

> > Convention Center.

> > His group will also have a talk and demonstration on careers in

> > oceanography by

> > the University of Rhode Island's Bay Campus, and much more.

> >

> > We look forward to seeing you in July in Providence.

> >

> > Sue

> >

> >

> >

> >

> > From: H Schulz [mailto:snooksmama@j...]

> > Sent: Wednesday, May 04, 2005 8:47 AM

> > Nesci, Sue

> > Subject: Re: AJAO2005 National Conference brochure-pdf

> >

> >

> > My son is 16. Last year, he was in a teen group and really

enjoyed

> it.

> > Will he be in a group this year now that he is 16?

> > Schulz

> >

> >

[Guest guest]

I'm not going to AJAO either.. I can't get the time off

(poly jra and spondy, 20)

[Guest guest]

AWWW, now im sad again...... i dont think anyones going to AJAO this

year!!... all I know is Stacia, AJ , and Liz, along with the 3 of us

from MN...I was really hoping to meet everyone....

Well hopefully next years will be somewhere like Chicago and everyone

will be able to go.

hugs Helen and (7, systemic)

-- In , bncknwurnumber@a... wrote:

> I'm not going to AJAO either.. I can't get the time off

>

> (poly jra and spondy, 20)

>

>

>

[Guest guest]

Helen,

Sorry that Nick is so tired all the time.If it's not arthur and steroid

withdrawl he should be feeling better in a couple of weeks.

The very emotional part is kind of strange,that usualy occurs on high doses

of the pred.

How are his joints?Any rash?I just ask because steroid withdrawl can actualy

mimic the sighns of a flare.I hope he feels better soon and feels like his old

self.

I will see what I can find today on the net.

Love and hugs

Becki

[Guest guest]

-Hi Becki...

Nick is really struggling with this latest drop in prednisone. Its

like all the winds been taken out of his sails. He is tired ALL the

time, sleeps on the bus to and from summer school. Falls alseep in

the van if we drive anywhere. Big dark circles under is eyes, but

thankfully no fevers or rashes.

Saturday was my nieces graduation and instead of being off running

and playing with the other kids, Nick just sat there. It breaks my

heart to see him just sit there looking tired, sad and unhappy. he

burst into tears over any little thing, this morning his juice was

lower than he thought it should be and sobbed his little heart out.

I felt like joining him.

Hopefully things will even out soon and he will bouce back to his

usual perky self. Any idea how long before he adjusts to the lower

dose????

HUgs Helen and NIcholas (7,systemic)

p.s LOVE the bee story... BOYS!!!!!!

-- In , Arthurnator@w... wrote:

> Helen,

> Just curious how day 5 was on the 1mg pred.Day 3 can be the

nastiest of all

> and it's called steroid withdrawl.Not always meaning a flare is

coming on.

> Everything is crossed that all is fine.

> I have an all boy experiance for you. somehow managed to get

28 bowls of

> tupperware out of the house and in the front and back yard each

one was

> covering up a bee,lol.

> I hope all is well.

> Love and hugs

> Becki and 6systemic

>

>

>

[Guest guest]

Helen,

I couldn't find what I was looking for but the one thing that did

keep popping up with steroid withdrawl is fatigue.

I used to have the pamphlet on steroids from the AF and you can read them

online.It has alot of info on tapering and the possible symptoms.

I hope Nick is perky real soon.

Love and hugs

Becki and 6 systemic

[Guest guest]

-Becki...

Nick always gets emotional when hes not feeling good... its one of

my 1st signs that somethings up. No rashes that ive seen and no

fevers. he says his joints are " fine " but you know how kids are

with the im ok symdrome.

Im pretty sure its the steriod withdrawal and not a flare and im

hoping things calm down for him soon. I dont think ill be reducing

any further until he feels good from this one. YOu know hes gotta be

feeling yucky when he would rather lay on the sofa than going in the

pool....

hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Helen,

> Sorry that Nick is so tired all the time.If it's not arthur and

steroid

> withdrawl he should be feeling better in a couple of weeks.

> The very emotional part is kind of strange,that usualy occurs on

high doses

> of the pred.

> How are his joints?Any rash?I just ask because steroid withdrawl

can actualy

> mimic the sighns of a flare.I hope he feels better soon and feels

like his old

> self.

> I will see what I can find today on the net.

> Love and hugs

> Becki

>

>

>

[Guest guest]

Hi Helen,

I found at times that Robbie would have similar emotional swings when I had

dropped his dose when it was quite low - for a shorter time span - as he would

have on the very high doses. It sounds like adjustment to the lower dose -

hopefully he'll perk up soon.

Robbie is continuing to do well, but reading some of what you describe with

Nick, made me think of Robbie right now. Dark circles, crying easier than

normal - and though he is into everything when we are out - playing with his

friends, constantly on the move at baseball practice (first tournament this

weekend) - he is asleep the minute he gets in the car - and sleeping in on the

weekends (not his usual) and no " can I stay up 15 more minutes " when I tell him

it's time for bed. No recent drop - this is kind of how he was last July before

his flare at AJAO time - but I keep telling myself he's on edge because of the

uncertainty with the upcoming move, and he's tired because he doesn't stop all

day! I hope that Nick perks up soon!

Val

Rob's Mom (7,systemic)

Re: Helen

-Hi Becki...

Nick is really struggling with this latest drop in prednisone. Its

like all the winds been taken out of his sails. He is tired ALL the

time, sleeps on the bus to and from summer school. Falls alseep in

the van if we drive anywhere. Big dark circles under is eyes, but

thankfully no fevers or rashes.

Saturday was my nieces graduation and instead of being off running

and playing with the other kids, Nick just sat there. It breaks my

heart to see him just sit there looking tired, sad and unhappy. he

burst into tears over any little thing, this morning his juice was

lower than he thought it should be and sobbed his little heart out.

I felt like joining him.

Hopefully things will even out soon and he will bouce back to his

usual perky self. Any idea how long before he adjusts to the lower

dose????

HUgs Helen and NIcholas (7,systemic)

p.s LOVE the bee story... BOYS!!!!!!

-- In , Arthurnator@w... wrote:

> Helen,

> Just curious how day 5 was on the 1mg pred.Day 3 can be the

nastiest of all

> and it's called steroid withdrawl.Not always meaning a flare is

coming on.

> Everything is crossed that all is fine.

> I have an all boy experiance for you. somehow managed to get

28 bowls of

> tupperware out of the house and in the front and back yard each

one was

> covering up a bee,lol.

> I hope all is well.

> Love and hugs

> Becki and 6systemic

>

>

>

[Guest guest]

Hi Val,

This Terri Aubrey's Mom met you at he mini conference at Fredericksburg I

read emails in here but may have missed how is Rob doing with the steroids he

was on them when I met you is he off them and How is doing in

General...............Aubrey is flare free for her joints for a year now next

month and Iritis wise will be a year in September, But I am waiting for the ball

to drop........with the eyes..........I know that sound freaky but it was only

the 9 month mark we made and I am just waiting for the words

FLARE...............just thinking of you and I took pics of Robbie and my son

they looks so cute..........I would love to send you a

copy.................Terri

Re: Helen

-Hi Becki...

Nick is really struggling with this latest drop in prednisone. Its

like all the winds been taken out of his sails. He is tired ALL the

time, sleeps on the bus to and from summer school. Falls alseep in

the van if we drive anywhere. Big dark circles under is eyes, but

thankfully no fevers or rashes.

Saturday was my nieces graduation and instead of being off running

and playing with the other kids, Nick just sat there. It breaks my

heart to see him just sit there looking tired, sad and unhappy. he

burst into tears over any little thing, this morning his juice was

lower than he thought it should be and sobbed his little heart out.

I felt like joining him.

Hopefully things will even out soon and he will bouce back to his

usual perky self. Any idea how long before he adjusts to the lower

dose????

HUgs Helen and NIcholas (7,systemic)

p.s LOVE the bee story... BOYS!!!!!!

-- In , Arthurnator@w... wrote:

> Helen,

> Just curious how day 5 was on the 1mg pred.Day 3 can be the

nastiest of all

> and it's called steroid withdrawl.Not always meaning a flare is

coming on.

> Everything is crossed that all is fine.

> I have an all boy experiance for you. somehow managed to get

28 bowls of

> tupperware out of the house and in the front and back yard each

one was

> covering up a bee,lol.

> I hope all is well.

> Love and hugs

> Becki and 6systemic

>

>

>

[Guest guest]

You are NOT whining! That's why Georgina started this list, for us all to tell what is going on with our JRA kids and to support each other. We are all concerned about Nick and I'm so glad that you are keeping us informed on what is going on with him.

Take care of you, too?Oh, as far as how he verbalizes what he is feeling, might I suggest the method of dealing with Mom...he'll talk to me briefly on Mondays, and Mondays only, about his pain. This has worked extremely well for us! and Rob 16 Spondy

On Wed, 10 Aug 2005 13:17:10 -0500 "Helen Burger" <hburger64@...> writes:

hey ..I was wondering how you were settling in out there... ive not had much chance to relax since returning from RI.. i got back on Tuesday, unpacked and did laundry and then had to pack again for hubby and my 3 oldest boys ( they went fishing in WI for the week) . I then had to pack for Nick and as they stayed with my SIL while i worked this past weekend. Now im busy packing again because the men return friday am and we all turn around and head to the north of MN for our family week vacation. PHEW!!Nick has tiny feet, hes in a kids 13.... we *might* be able to move up to a 1 hopefully when we go buy school shoes.Nick is crabby and not feeling good.... i have deicded that his irrational outbursts tie directly into how hes feeling. I wish he would talk to me more about what hurts, but he doesnt. we had a long talk last night and I told him i didnt think the enbrel was working as well as it did in the begining. It was soo sad to see his face when he looked at me and said he didnt think it ever worked. Now i know it did in the begining becuase there was such a marked increase in how well he was doing. But i think slowly over the past few months as i have been tapering the prednisone, hes had increased pain and stiffness that hes not always telling me about. I think it gets to a point where they think this pain etc is just normal and dont remember much different. He now wakes every morning with stiff and sore hands/fingers. he refuses to wear his splints as he says they dont work because he still hurts in the mornings (( ive noticed him flexing his ankles and his hands a LOT during the day so i know they are all bothering him. His ankles have started "cracking" everytime he moves them, as do all this fingers and his wrists. its soo hard to judge how bad he is... for the most part he still functions well, but hes not wanting to do anything. Hes not been in our pool since we returned from RI. he just wants to lay around and watch tv, or play computer or video games. When Nick feels good he LIVES in the pool, hes a fish!Tomorrow is his regular appt with Dr W. im not sure what we will do, perhaps nothing, just leave things where they are and hope things get better for him. hes maxed out on the MTX.. I talked to a couple of doctors at RI about enbrel dosing and they both said they usually dont go over what dose hes on right now. I was confused about this as i wondered why his doc has not increased his enbrel dose as Becki's is on higher doses. But both doctors seemed to agree with what dose hes currently on. nick has also started to complain of daily headaches, so i dont know what thats all about either, perhaps the indomethacin??Somedays you just get soo fed up with it all....like today.Sorry this turned into a mega whinefest....hugs Helen and (7 turning 8 next week! Systemic)Hugs..HelenDH Dan(22)(15)(13)Zachary(10)(7)(6)----Original Message Follows----From: "sonia1md" <sonia1md@...>Reply- To: Subject: Re: Systemic rash Pictures (helen)Date: Wed, 10 Aug 2005 17:35:48 -0000Hi Helen,How have you been doing these days? I bet your glad to be back homeand in the swing of things again. Has Nick been feeling ok? Thanksfor posting his rash pictures...I always found it helpful to be able tolook and compare Aundrea's rashes to others...Probably because it wasalways said that her rash didn't fit the "typical" picture.Nick has the cutest little feet! Although, Aundrea just turned 10 sheis squeezing into a ladies size 8 ! lol I have a very tall family withvery big feet. Naturally, we are all a bit envious of those cuteperfect little tootsies! :-)We are doing fine. Getting settled in and making appointments with newortho, dentist, rheumy, ped...etc. So far we have been very pleasedwith everyone.I need to work on finding the ped yet and Aundrea is do for some labwork soon so that is next on my list to get completed.Hope your having a great day! (Aundrea 10 systemic)> I found some of Nicks early rash pictures that i didnt know i took> when i was cleaning up some of the 5,000 digital pictures on mylaptop.>> I have posted them to the photo album in the systemic rashes folder> for those how are interested in the rash.>> Hugs Helen and (7,systemic)

[Guest guest]

C'MON DOWN!!

I'd love to show you guys our part of the world...

Hope to see you in Atlanta~

and Rob 16 Spondy

On Fri, 02 Sep 2005 21:35:50 -0000 " hburger64 " <hburger64@...>

writes:

--Wow... WHAT A GREAT WEEKEND..!!!!

, we are on our way, you sound like the perfect hostess!!!

Becki... im so glad had an awesome last visit. What a great

way to end the study. WTG !!!!!

hugs Helen and (8,systemic)

- In , Arthurnator@w... wrote:

> Hi all,

> I'm fianaly getting around to post about s last study visit.

> We arrived in Louisville Friday evening and was gracious

enough to take

> us to see Tree.She looks just amazing and when we walked in she

was finishing

> her supper.Looking at her you would never know she has been

fighting for her

> life.She is even getting some of the sparkle back in her eyes.

> Saturday took us to the zoo.They have a realy nice zoo with

alot of

> animals.The kids and got a bit whiny towards the end but

felt much better

> after a round of cherry icees.Afterwards we had dinner then picked

up ice cream

> to take to Rusty's.He looks better then I have ever seen him.His

hair is

> grown out long and blonde,he has a full beard and I swear the ADA

trouble has put

> a swing in his step.He is definately a man on a mission.

> Sunday we went to 's.Rob has an awful cold and couldn't go to

Holiday

> World and Spashin safari.It was a bit of a drive but well worth

it.My kids are

> still a bit chicken over rides but we got on the ride that

slings you

> straight up about 100 ft then just drops you then does it

again.The water park

> was just awesome and the kids got flushed down the toilet and

lived in the wave

> pools.After about 7 hours left and had dinner then had to say our

goodbye's to

> and ,which is always hard to do.They are just the

greatest friends

> a person could have.

> Monday, seen Lovell and is perfect again.All the

residual swelling

> is out of his wrists and lft ankle.We see him as a private patient

in Feb.No

> med changes up or down.He is off the growth chart at 75lbs and

still between

> the 75th and 90th percentile at 4' 2 1/4 " .The genome study went

great and

> someday they will know what drugs to start out with instead of all

the trial and

> error process.Cincy also does a charity mailing 3 times a yr and

the fall issue

> was all about .I have lots of copies that will come in handy

for next

> years walk.

> It was a wonderful little vacation with the best part being after

4 hrs at

> the zoo and 7 hrs at the park didn't have squishy knees or

ankles.He did

> however get diagnosed with flat feet,lol

> Love and hugs

> Becki and david 7 systemic

>

>

>

[Guest guest]

Helen,

I'm so glad they got him on one try and can only imagine how freaked he was

last time with blood everywhere.

Hopefuly in the future infusions he won't have any kind of reaction and I

wonder if towards the end and him being quiet might have been the Benadryl

making

him a bit groggy.

That is great that he's not stiff in the morning and not sitting at the end

of the drive waiting for the bus.I've heard Remicade works quickly so

everything is crossed that this does the trick.

I'm sure you are nervous about seeing the genetic dr but I am glad they are

able to get him in today.

I know you won't get any definate answers today but let us know if they have

any ideas.

Give him a hug from us because most likely he will have to have blood drawn

and unless he has another vein he's probably still a bit sore from Friday.

Speaking of which I need to wash boo boo bear because we are about 2 weeks

late in getting labs and wants to sit by himself today.He's only done it

once and I keep expecting him to not let me in the room.

Love and hugs

Becki and david 7 systemic

PS)I hope Nick can walk and walk tonite and not have any after effects and

wake up in the morning like a little boy should.