Re: [jra]

[Guest guest]

Hi :

I remember well the days of getting nearly frantic with wanting the doctors to do SOMETHING and just having to wait, wait, and wait some more. It was the hardest part of our journey. Rob, too, felt very hopeless for quite some time that he was never ever going to feel better. Tell that Rob felt that way too, and once the right combo was found, he was a new man!!

Rob's chest is still pretty sensitvie since his surgery; if he sneezes, he exclaims out loud that it hurts...which is very ATYPICAL of him. This particular surgery takes a long, long time to heal. As far as his arthritis, he always has chronic pain in his hips and knees. He seems to be at status quo, no worse. He really does not give me much of an answer any more if I ask him. Its hard with him being away, I don't really have a very good handle on his current status, and I think he likes it that way.

I hope to have a long talk with him this weekend and its going to be hard. He insists upon being treated like an adult and if anything I say comes across wrong, he cuts off the conversation. I am learning the right and wrong ways to ask him things; last time he was home I got a lot of information out of him and we didn't have any arguments.

Its been rough since going off the prednisone. My ankles, knees and hands have been bad again. I called the doctor's office yesterday and asked them to go on and check on my insurance coverage for the Orencia, so if the doctor decides on that at the next visit October 30, we can get it set up pretty quickly. The weather has been the major culprit in me feeling bad. Oddly enough, I'm very stiff in the mornings, but the major pain sets in through the evenings. Like someone on here noted, no 2 cases seem to be alike, or 'textbook'.

I hope that you are feeling better soon yourself. Take care.

and Rob 18 Spondy

> It sounds like the usual 'wait and see if these meds work or > not" that is so typical. I think that this was the most > frustrating part of Rob's journey, was having to give this med > or that med so much time to work. It used to drive me crazy. I'm > so glad, however, that 's doctors seem to be working > together and consulting one another...when you are dealing with > more than just one issue it is so important.> I hate to hear that you are still not feeling well. I hope > that you get more answers on November 7. > I just talked to Rob and he is coming home for a visit on > Saturday. He was studying so our conversation was quite short. > Saturday can't come soon enough!> and Rob 18 Spondy> > Re: Insurance - > *#$ & !*#($ > > and venting> > @group s.com> > > > > Sorry - I know I am waaaaaay behind in responding to e-mails > > > this week as my hands have been awful....but my dander is so > > up > > > right now, I had to vent or burst...> > > > > > my husband has been pushing me to verify out insurance > > coverage > > > for as she will be turning 18 late May and we don't > > want > > > any surprises. Well, she is covered til 19, then > > til 25 IF > > > she is a full-time student. BUT, let her be even > > 1/2 > > > credit short, and she will no longer have insurance... .no > > > exceptions.. ..does not matter what the reason, she would be > > > instantly dropped, permanently. > > > > > > Don't our kids (and us parents) have enough worries? > > > Watching our kids suffer, miss out on "normal" stuff, alter > > life > > > plans, struggle to keep up, take med after med, and still > have > > > daily pain and fatigue?> > > > > > She feels out of place at high school, as all of her > > > friends are self-focused and she is in such a different > > > place...one boy kept asking why she is absent so must and > she > > > finally told him..the first and only she has told...kids are > > > writing a controversial essay for english - most chose > > abortion > > > or lowering the drinking age...my child is > writing > > (all > > > her idea) on insurance companies and their exclusionary pre-> > > existing clauses..she is 17 and her mind is thinking ahead > > about > > > these things. Instead of parties on the weekends, she is > > looking > > > to volunteer for a group that provides fun activities for > > > children with cancer and their families. But, right > now, > > > it is a lonely place to be.> > > > > > Anyway, sorry, off my soapbox there...it just seems such a > > major > > > injustice that these kids who are ill and are trying so hard > > to > > > accomplish some normalcy with their life (e.g. achieve > college > > > degree), may end up jeopardizing their healthcare, but they > > have > > > no choice because the 12 units is they only way to > > > maintain the healthcare. > > > > > > Have any others faced this, where their child just could not > > > handle the full-time credits? What options are > out > > > there? What did you find you could do? If her > > > disease was under control, I might not feel so > worried....just > > > this a.m., she showed me her fingers, and they did not even > > look > > > like they belonged on her hand, they were so swollen and > > > misshapen... and her migraines have been worse as well....I > > think > > > she is scared, though she doesn't come right out and say so, > > she > > > gets moody and sullen. She is to increase the mtx > > tonight > > > but if it hasn't done much so far, is it time to push for a > > > biologic? She has been on the mtx 6 weeks now.> > > > > > Thanks for allowing the vent....I am worried too...and when > > > she gets to feeling so bad physically, so tends to > > > communicate less, and that is difficult... .ah, teenagers... .> > > > > > Any input on the insurance dilemmas, or even things > > > we can do to fight these terrible standards, > > and/or where > > > to begin, I'm anxious to learn!> > > > > > Thanks all, for your patience.> > > > > > nancy> > > worried mom of , 17, poly, cvid, migraines> > > > > > > > > ------------ --------- --------- ---> > > Catch up on fall's hot new shows on TV. Watch > > > previews, get listings, and more!> > > > > > > > > > > > ---------------------------------> > Don't let your dream ride pass you by. Make it a reality > > with Autos. > > > > > > > > > > > > > > > > > > > > > > ---------------------------------> > Don't let your dream ride pass you by. Make it a reality > > with Autos. > > > > > > > > > > > > > > > > > > > > __________________________________________________> >

[Guest guest]

Hi ,Thank you for your faithful encouragement! Waiting 18 months for a diagnosis, I think we both hoped the mtx would do the trick by now. I know she is not alone in this - but I think she feels alone and disappointed right now. I will definitely share about Rob with her - thank you.I would imagine Rob's pain threshold is pretty high so for him to exclaim out loud, it must be pretty severe. That was pretty intense surgery he had; have they commented how long it usually takes for the bones and muscles to all fully heal and calm down? In terms of his hips and knees, is it a large campus with lots of walking for him between classes? I am beginning to understand what you mean about not getting much information from them at this age - with still at home, I can observe a lot, but she tries to hide things and will withhold info from me (e.g. she hid her rash for two months

before I happened to see it) in the quest for independence. As said regarding it is part of their passage to adulthood and you are so right about having to tread carefully and figure out the right and wrong ways to ask them things. I hope Rob is able to listen with an open mind and heart this weekend, as I know anything you and hubby suggest will be with his best interest at heart. Between the stress at school for Rob and the worry you have had, I hope you all have some time to do something fun and relaxing as well. So sorry to hear things are flaring up for you now that the prednisone has worn off. I hope you get the insurance approval without delay so you can get started on the Orencia ... and that it will be a good fit for you! Please update us about Rob's visit when you can.snooksmama@... wrote: Hi : I remember well the days of getting nearly frantic with wanting the doctors to do SOMETHING and just having to wait, wait, and wait some more. It was the hardest part of our journey. Rob, too, felt very hopeless for quite some time that he was never ever going to feel better. Tell that Rob felt that way too, and once the right combo was found, he was a new man!! Rob's chest is still pretty sensitvie since his surgery; if he sneezes, he exclaims out loud that it hurts...which is very ATYPICAL of him. This particular surgery takes a long, long time to heal. As far as his arthritis, he

always has chronic pain in his hips and knees. He seems to be at status quo, no worse. He really does not give me much of an answer any more if I ask him. Its hard with him being away, I don't really have a very good handle on his current status, and I think he likes it that way. I hope to have a long talk with him this weekend and its going to be hard. He insists upon being treated like an adult and if anything I say comes across wrong, he cuts off the conversation. I am learning the right and wrong ways to ask him things; last time he was home I got a lot of information out of him and we didn't have any arguments. Its been rough since going off the prednisone. My ankles, knees and hands have been bad again. I called the doctor's office yesterday and asked them to go on and check on my insurance coverage for the Orencia, so if the doctor decides on that at the next visit October 30, we can get it set up

pretty quickly. The weather has been the major culprit in me feeling bad. Oddly enough, I'm very stiff in the mornings, but the major pain sets in through the evenings. Like someone on here noted, no 2 cases seem to be alike, or 'textbook'. I hope that you are feeling better soon yourself. Take care. and Rob 18 Spondy > It sounds like the usual 'wait and see if these meds work or > not" that is so typical. I think that this was the most > frustrating part of Rob's journey, was having to give this med > or that med so much time to work. It used to drive me crazy. I'm > so glad, however, that 's doctors seem to be working > together and consulting one another...when you are dealing with > more than just one issue it is so important.> I hate to hear that you are still not feeling well. I hope > that you get more answers on November 7.

> I just talked to Rob and he is coming home for a visit on > Saturday. He was studying so our conversation was quite short. > Saturday can't come soon enough!> and Rob 18 Spondy> > Re: Insurance - > *#$ & !*#($ > > and venting> > @group s.com> > > > > Sorry - I know I am waaaaaay behind in responding to e-mails > > > this week as my hands have been awful....but my dander is so > > up > > > right now, I had to vent or burst...> > > > > > my husband has been pushing me to verify out insurance > > coverage > > > for as she will be turning 18 late May and we don't > > want > > > any surprises. Well, she is covered til 19, then > > til 25 IF > > > she is a full-time student. BUT, let

her be even > > 1/2 > > > credit short, and she will no longer have insurance... .no > > > exceptions.. ..does not matter what the reason, she would be > > > instantly dropped, permanently. > > > > > > Don't our kids (and us parents) have enough worries? > > > Watching our kids suffer, miss out on "normal" stuff, alter > > life > > > plans, struggle to keep up, take med after med, and still > have > > > daily pain and fatigue?> > > > > > She feels out of place at high school, as all of her > > > friends are self-focused and she is in such a different > > > place...one boy kept asking why she is absent so must and > she > > > finally told him..the first and only she has told...kids are > > > writing a controversial essay for english -

most chose > > abortion > > > or lowering the drinking age...my child is > writing > > (all > > > her idea) on insurance companies and their exclusionary pre-> > > existing clauses..she is 17 and her mind is thinking ahead > > about > > > these things. Instead of parties on the weekends, she is > > looking > > > to volunteer for a group that provides fun activities for > > > children with cancer and their families. But, right > now, > > > it is a lonely place to be.> > > > > > Anyway, sorry, off my soapbox there...it just seems such a > > major > > > injustice that these kids who are ill and are trying so hard > > to > > > accomplish some normalcy with their life (e.g. achieve > college > > > degree), may end up

jeopardizing their healthcare, but they > > have > > > no choice because the 12 units is they only way to > > > maintain the healthcare. > > > > > > Have any others faced this, where their child just could not > > > handle the full-time credits? What options are > out > > > there? What did you find you could do? If her > > > disease was under control, I might not feel so > worried....just > > > this a.m., she showed me her fingers, and they did not even > > look > > > like they belonged on her hand, they were so swollen and > > > misshapen... and her migraines have been worse as well....I > > think > > > she is scared, though she doesn't come right out and say so, > > she > > > gets moody and sullen. She is to increase the

mtx > > tonight > > > but if it hasn't done much so far, is it time to push for a > > > biologic? She has been on the mtx 6 weeks now.> > > > > > Thanks for allowing the vent....I am worried too...and when > > > she gets to feeling so bad physically, so tends to > > > communicate less, and that is difficult... .ah, teenagers... .> > > > > > Any input on the insurance dilemmas, or even things > > > we can do to fight these terrible standards, > > and/or where > > > to begin, I'm anxious to learn!> > > > > > Thanks all, for your patience.> > > > > > nancy> > > worried mom of , 17, poly, cvid, migraines> > > > > > > > > ------------ ---------

--------- ---> > > Catch up on fall's hot new shows on TV. Watch > > > previews, get listings, and more!> > > > > > > > > > > > ---------------------------------> > Don't let your dream ride pass you by. Make it a reality > > with Autos. > > > > > > > > > > > > > > > > > > > > > > ---------------------------------> > Don't let your dream ride pass you by. Make it a reality > > with Autos. > > > > > > > > > > > > > > >

> > > > > __________________________________________________> >

[Guest guest]

I am so sorry to hear about your mom. Hope she is doing better. Please update

when you get a chance.

Take care

and Rob 18 JAS

Re: & all

> and all,

>

> sorry I've been mia - my mom took a fall and has been

> hospitalized since same day as 's appt. She will be

> okay but she lives distance from me so it has been hectic trying

> to juggle. Hope all had a blessed Thanksgiving.

>

> Will post update on 's visit soon. Best to all.

>

>

>

> snooksmama@...

> wrote: :

> Just hoping you will post details of 's visit...hope

> all went well. Let us know when you get a chance...

> and Rob 18 JAS

>

>

[Guest guest]

:

I am always glad when you share what is going on with you and your family. You

have a very full plate right now and we are here to listen!! Sometimes I think I

talk WAY too much about me and need to listen more...

I wanted to comment quickly on your tests...you can have negative testing and

still have RA...I am a prime example! I have obvious swelling, inflammation, and

the beginnings of a knee contracture and my tests are essentially negative..yet

my physical exam is quite positive for the disease.

It always upsets me when docs base their diagnoses on testing, rather than what

they can obviously observe...

They always told us in nursing school, (critical care nursing), the machines are

a tool, but ALWAYS LOOK AT THE PATIENT! I feel the same way about labs, in this

case...

Just my 2 cents. I am so sorry about your mom.

Rob's story is too long to go into here..I'll try to write soon. Trying to get

dinner on the table and get to an engagement I have tonight...

I'll write more later. Give hugs from us, I can't imagine how she is

dealing with all this...bless her heart.

and Rob 18 JAS

Re: OT -

> ,

>

> I hope you had a wonderful and blessed Thanksgiving with your

> men! Did Rob stay the whole week?

>

> I was glad to hear is healing well, and that Rob was

> able to drop a class. How is his roommate situation?

> Will he be able to switch at the semester? I'm pleased

> your colonoscopy was clear!!! and that your second infusion of

> the Orencia went smoothly, but sorry about the vein

> issues...that is miserable - has awful veins too

> and when they did her labs last visit, it took two lab techs,

> heat packs, and 4 trys...it seldom gets to her, but it was that time.

>

> So have you started the Restasis? They thought I might

> have Sjogren's syndrome as well as some arthritis more than

> osteo - but the rheumy (who said I have six swollen joints in

> addition to my hands and was soooo sure it was more than osteo)

> said at my second appt last week that the blood work came back

> normal, so it is merely a " genetic early aggressive osteo " and

> she has put me on Plaquenil. While I did not produce any ANA, my

> results to the Schirmer's test, even after two months of

> Restasis, are very poor....so I guess it's probably not

> Sjogren's but ?? They can plug the tear ducts. You

> mentioned something about some drops that sounded like a form of

> prednisone - do you have inflammation in your eyes?

>

> saw an Orencia commercial on television - (have you seen

> it?) and they were asking if you can do this or that then asking

> if this list of meds wasn't working for you (including mtx) and

> she just says.... " duh... " - then perhaps Orencia is the

> med for you....

>

> Well, I am exhausted - we spent hours waiting to see an

> orthopedist who essentially said my mom's break was very severe,

> would normally require surgery but given her age and

> osteoporosis, she will be best to accept the limitations it will

> leave her with...unless she ends up with a dis-union....

> I am sorry to complain - I am just very, very tired of doctors

> right now.....

>

> I really did NOT mean to vent. I am always interested in

> you, and Rob and . I would love to hear about Rob's

> Thanksgiving visit home. If I can find a few minutes, I

> received something from our local senator and your letter has

> inspired me to write to our local senator regarding students and

> requirements for healthcare coverage.

>

> Well, I am rambling....it happens when I am tired...My best to

> you and your family.

>

> (, 17, poly)

>

> snooksmama@...

> wrote: :

> Just hoping you will post details of 's visit...hope

> all went well. Let us know when you get a chance...

> and Rob 18 JAS

>

>

[Guest guest]

You and your family did an incredible job!! WOW!! It brought tears to my eyes.

I'm going to forward this to my husband at work, I know he will like to see it.

Andy is an amazing guy; what a great spokesman for JIA!!!!!!

CONGRATULATIONS!!

Hope the run goes well today. Go Andy!!

and Rob 18 JAS

Re: Please help! TV interview tomorrow!

> Hello everyone,

>

> Just wanted to let you know that our interview was aired on TV

> tonight. It

> is now on the web at this address:

>

>

http://www.myfoxdetroit.com/myfox/pages/News/Detail?contentId=5224002 & version=1 & \

locale=EN-US & layoutCode=VSTY & pageId=3.5.1

>

> If this link doesn't work for some reason, go to

> www.myfoxdetroit.com and

> click on health. The video should come up right away.

>

> I thought Andy did a good job, but something can be said for mom

> and dad : )

>

> Have a good weekend,

>

>

>

>

> On Dec 8, 2007 9:45 AM, Moy <jaimelynmoy@...> wrote:

>

> > Colleen -- What a wonderful thing to say! That's so sweet.

> >

> > Thanks everyone for your help. It went much better yesterday

> than I had

> > hoped. I'll be excited to see it when it comes out. This will

> probably be on

> > Wednesday. Not sure yet if there will be a link online, but if

> there is,

> > I'll be sure to post it.

> >

> > Take care and thanks again for putting my nerves in check!

> >

> >

> >

> >

> >

> >

> > On Dec 6, 2007 1:54 PM, Colleen <bookissmom@...

> > wrote:

> >

> > > HI -

> > >

> > > I know I;m too late to catch you before your interview...

> but I know you

> > > did great! Anybody who can put together such a fantastic

> " Steppin' Out "

> > > event has everything it takes to wow with the mission info!

> > >

> > > Please let us know how it goes... and please know that you

> are a hero to

> > > me... and all your efforts are an inspiration!

> > >

> > > Colleen - mom to Caitlin, 9, systemic

> > >

> > >

> > >

> > >

> > > jaimelyn_mi <jaimelynmoy@...

> <jaimelynmoy%40gmail.com>> wrote:

> > > Yikes! I just got a call from a local TV station asking to

> do an

> > > interview tomorrow at 1 p.m. This would be to talk about juvenile

> > > arthritis. Any suggestions?? I'm really bad at this sort of

> thing, and

> > > I'm sure I'll mess it up if I don't try to prepare.

> > >

> > > Any help you can offer would be great!

> > >

> > > Thanks,

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make your homepage.

> > >

> > >

[Guest guest]

I retract my idea and agree Hadley's is better if it means getting a ped rheumy

called in!!!

Thinking of you and Caleb.

hadley_messner <hmessner@...> wrote: I

would take him to Children's ER. Not having calls returned is

unacceptable! 105 is too high. I'm not saying this because I am

an " alarmist " but because taking Caleb to the ER will force the Ped

Rheumy on call to treat him NOW. You shouldn't have to wait to

aleviate his level of pain and discomfort --- it's absurd that no one

has called you! -Hadley (Isabelle, 3 yrs.)

I guess you can say that I am to that I am angry and

getting a

> > little short tempered with my childs illness. We

> > just started week

> > 9 since the onset of his illness, he has been sick since

> > haloween!

> > That really seems like a very long time for a child to be

> > sick have

> > all of the same symptoms and with all of the medical

> > advances they

> > can just tell me what it is not not what it is. Am I

> > the only one

> > that ever felt tlike this with this illness? I

> > know that Calebs

> > first sed rate was high but since then pretty normal and

> > some other

> > labs were a little off then they go back to normal then

> > some other

> > become off. I feel like I am this crazy woman living

> > in a dream

> > world, that no one not even the best DR's can come to a

> > diagnosis.

> > I get well I really think its systemic JRA but he had that

> > cold last

> > week and that put a wrench into the system with our

> > diary. Maybe

> > next time you are in we can finally give you that

> > diagnosis. I am

> > like ok the *things* that you say it could be all get the

> > same

> > treatments why can we just start something to help him

> > feel better.

> > I guess driving over a hour to the hospital and one hour

> > back weekly

> > for them to look at us and say well we think but we are

> > not ready

> > to " hang my hat on it yet " really is making me

> > insane!. Ok thanks

> > for letting me vent I guess the question at hand is how

> > long did you

> > have to wait for a dx for your child and while in the

> > waiting phase

> > did you start on meds. And how long does these

> > flares last? I just

> > feel like sitting and crying thinking about all of the

> > advances in

> > the medical field and still they can not come up with a

> > true

> > diagnosis. I was diagnosed with MS back in 02 and

> > then it only took

> > me a month to get a diagnosis why so long for this, and

> > all the

> > could be's and might be's are just stating to take its

> > toll on us as

> > a whole! When is to long to wait on a diagnosis and

> > when should we

> > see a second opinion.

> >

> > Again thanks for letting me vent hopefully I am not the

> > only one

> > that has gone through this.

> >

> > mom to Caleb 7 (? systemic JIA)

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make your homepage.

> >

> >

[Guest guest]

Veri,

You may want to give her physician a call today if she looks any worse. Some

people, including my husband, react much worse than others to poison ivy.

Steve has to get medical attention every time he gets near it.

Liz

From: [mailto: ] On Behalf

Of veristroud@...

Sent: Saturday, July 24, 2010 10:34 PM

Subject:

I need to know something about poisin ivy. Jaye got into some poisin

ivy this past week. It is all over and she is miserable. My son used to get

into it when he went fishing or hunting but he did not react very bad. I

have never had it. My ex husband used to get it but he just had a rash and

the itch for a few days and it was over. Jaye is on day five and hers

is getting worse. Hers is swelling, and is oozing all over. She also has

some black spots on her that really look strange. I will get her into the

doctor on Monday morning but not sure what to do now. Any ideas?? Is there a

chance that being on the mtx might cause her to have a worse reaction? Just

wondering. I have given her benadryl for the itch.

Veri & Jaye 16 poly

[Guest guest]

I am allergic to Poinson Ivy.  If that sounds logical.  When exposed to it I

get

it very bad and it covers my body.  In my mouth even!  If you are concerend

call

the doc.  I used to get a shot for it and it helped to calm it down and go

away.  Probalby steroids.

________________________________

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

Sent: Sat, July 24, 2010 10:34:28 PM

Subject:

 

I need to know something about poisin ivy. Jaye got into some poisin ivy

this past week. It is all over and she is miserable. My son used to get into it

when he went fishing or hunting but he did not react very bad. I have never had

it. My ex husband used to get it but he just had a rash and the itch for a few

days and it was over. Jaye is on day five and hers is getting worse. Hers

is swelling, and is oozing all over. She also has some black spots on her that

really look strange. I will get her into the doctor on Monday morning but not

sure what to do now. Any ideas?? Is there a chance that being on the mtx might

cause her to have a worse reaction? Just wondering. I have given her benadryl

for the itch.

Veri & Jaye 16 poly

[Guest guest]

Yes, both of the accounts that sent erroneous emails have been placed into

moderated status again ... at least until the issues can get sorted out.

Apologies for the inconvenience!

Aloha,

Georgina

Re:

> It seems like Val's email for this site has been corrupted. Do we have a

> protocol for that?

>

>

>