Intro

[Guest guest]

Hi Val,

You do know that a Workers' Comp. attorney won't cost you anything up front,

right? By law they take even a smaller percentage (of any settlement) than a

Personal Injury attorney takes. It's something like 20% (or less). P.I.

attorneys take 33.3%. It's worth having a free consultation, methinks.

Kathleen

>

> >

>

> >

>

> > From: Dot Sheltie <dotsheltie@>

>

> > Subject: Re: intro

>

> > Joint Replacement

>

> > Date: Monday, April 13, 2009, 4:05 PM

>

> >

>

> >

>

> > Hi Val.

>

> > I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after a

year but his doctor said he is going to redo it .

>

> > I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If you

guys pray then I can use all I can get.

>

> > Dot

>

> > Florida

>

> >

>

> > 'Until one has loved an animal, part of their soul remains unawakened'

>

> >

>

> >

>

> >

>

> >

>

> >       

>

> >

>

> >

[Guest guest]

Hi Val,

I'm not an attorney, but I have worked with people who had Workers Comp claims

and did get attorneys. It's like getting Social Security Disability Income. If

you run into trouble, you get an attorney who specializes in these areas. There

is a limit on the amount they can collect (often 25%), and they take their fee

out of the total settlement. Sound like you need this kind of help. You can

often find these attorneys in the yellow pages. If your hometown has some sort

of advocacy center for disabled people, they can recommend a list of names. I

hope there's an end to the runaround and pain in sight for you!

Alice

>

> Hi Val,

>

> You do know that a Workers' Comp. attorney won't cost you anything up front,

right? By law they take even a smaller percentage (of any settlement) than a

Personal Injury attorney takes. It's something like 20% (or less). P.I.

attorneys take 33.3%. It's worth having a free consultation, methinks.

>

> Kathleen

[Guest guest]

BEST OF LUCK

Arun 

On 7/18/09, carfar650 <cara.toomey@...> wrote:

 

Hello !! I may be having cholesteatoma surgery soon. My Dr. is trying to get my ear as healthy as possible from a current infection before making any major decisions, but it looks as if that is where I am headed. She has stated usually that this will take two surgeries to correct, is that been your general experience ? I have been warned that the first one may actually leave hearing worse until the removed structures are rebuilt ? This is all very frightening and am wondering what hearing loss anyone experienced after even the second surgery ? and perhaps just some general things to expect.

[Guest guest]

My first ear surgery was set up that way. Surgery one to explore the extent of the cholesteatoma and remove it. Surgery two to make sure the cholesteatoma was gone and reconstruct

the ear/hearing bones. While I’m sure that works for many people, in my case, I had 20 years of cholesteatoma growth that was found to have been quite extensive during the exploratory surgery, so while they did the best they could to remove it, and then to

put a prothesis in the ear during surgery two, that prothesis ended up falling out later as a result of more infections. That was just me tho. Based on my aggressive form, and then having it found in my other ear, I wear hearing aids in both ears because my

now 8 cholesteatoma surgeries kept making the ear canal area larger and larger to the point where now I can just go into the clinic to have my ears checked and not have surgery. I haven’t had a cholesteatoma surgery for 13 years.

Good luck to you!

IDQ Companies

[Guest guest]

Welcome! Hope you find lots of useful info here. Please share your own

experiences to help US all learn and grow too!

Sandy r

>

> Hi All

>

> I was banded 3 years ago in Belgium and I live in Ireland. I had about 100lbs

to lose in total, lost about 50 then got complacent!! About 9 lbs has crept back

on this last year through biscuits, chocolate and red wine! I have decided that

enough is enough and it's all got to go now with my holiday at the end of august

as a goal date. I look forward to reading the posts on this list. Deborah

>

[Guest guest]

Hi all. I mostly just wanted to introduce myself - I joined the list a few

days ago. After 2-1/2 years, I guess I am at a point where I am able to

acknowledge that my daughter's arthritis is, in fact, here to stay.

My name is Michele. I live in South Orange County, CA, with 3 children - K

(12), C (10) and M (5), as well as my DH. My middle guy, C, has had a lot

of health problems growing up, but its my older DD, K, who was diagnosed

with pauciarticular (aka oglio) JRA/JIA (our dr says JRA still but I know

the more recent literature says JIA) about 2-1/2 years ago.

Long story short, the arthritis started in her right knee, after about 3

months, showed up in her left knee. It was extremely odd because her

initial knee pain showed up while she was on summer break from dance (K is a

semi-serious ballerina who dances nearly daily, even now - the studio closes

the last 2 weeks of August). We just couldn't figure out how she hurt

herself! Once we went through the rigmarole of seeing every dr. who might

have an interest in her knee, she was finally diagnosed with pauci. She

initially had a steroid injection, which resolved the problem for a time.

But her knees swell up and hurt from time to time, always ache/are stiff in

the " cold " winter months as well as when it is foggy. The dance seems to be

a sort of PT for her as she is exceedingly limber and in great shape - we

saw a physical therapist a couple times, but there wasn't much she could

really do for K. Right now, we only treat as needed with naproxen.

The first casualty of this lovely disease was her aspiration of being a

professional ballerina.

As I understand is not uncommon with girls with her version of JRA, she also

has the accompanying eye issues. Unfortunately, that seems to be where her

arthritis is the most active. She has pretty steadily used predforte since

we first started seeing the ophthalmologist. So far, no signs of the list

of horribles that come up with long term predforte use. I think there might

have been one 8 week period when she was off the drops. Anyway, most

recently, in January, we found out that the " good " eye was in the worst

flare up in either eye that she has had since she was first diagnosed.

Of course, it doesn't bother her at all since iritis is pretty symptomless

unless its really, really bad.

We had to switch rheumatologists in January as well. Our dr., who we really

liked and who was in our corner, left CHOC for Kaiser. Now we see the head

of the rheumatology practice at CHOC. K doesn't like her as much - she

treats her like a kid with a Disease rather than a kid who happens to have a

bad knee. She has been talking to us since January about using

methotextrate. K is terrified because the steroid shot was an incredibly

painful, horrible experience for her. I'm terrified because.... its

methotextrate.

I guess this leads to my questions of the moment. Is it unusual for the

disease to take this course? Do drs. typically prescribe methotextrate for

kids with iritis rather than major joint issues? And what should I be

asking if K's eyes don't resolve and the drs. start pushing systemic drugs?

I'm looking forward to " meeting " you all and learning more about how to

handle K's JRA as she crosses into adolescence.

Michele - mom to K - pauci & iritis

[Guest guest]

Michele,

I have 2 kids with arthritis. Both were age 10 when they were diagnosed.

I know the meds are scary, but her disease is scary. The goal in pediatric

rheumatology is to " put the fire out " with meds, then wean off the meds. This

gives the best chance of putting the disease into remission and stopping joint

damage. Without proper treatment her knee is getting more damaged.

I know very little about iritis. I do know that it can be very serious. From

what I can remember it can even cause blindness. Is your opthamologist a

pediatric arthritis specialist? If not you need to find one quickly.

I know dealing with preteens and teens can be tricky. Unfortunately, it is our

job to protect them and advocate for them until they are adults. Sometimes we

have to force them into things they don't like. I had to hold down my 10 yo son

on several occasions to give him injections. The guy couldn't walk he was in

such bad pain, but was scared to death of the injection. Once he realized how

wonderful the med was, he started to self inject and we worked together to make

it as comfie as possible.

As for the methotrexate. One kid had bad tummy issues and we had to discontinue

it with in a month. The other took it for a year without missing a step. Each

child is different. She really needs some type of disease modifier, quickly.

I would recommend an arthritis camp this summer for you and your daughter. It

is very fun and educational.

Audra

14 poly 07

Peyton 13 poly 08

>

> Hi all. I mostly just wanted to introduce myself - I joined the list a few

>

[Guest guest]

Michele,

I agree with Audra wholeheartedly. I was terrified to start my son on all that

medication, especially when you read the pamphlets from the pharmacy listing all

the side effects. The medications really do make a huge

difference...Methotrexate has been a Godsend for us.

My son is also ANA positive which puts him at risk of developing iritis. Audra

is right, it can cause blindness. Our pediatric opthamologis told us that many

times there are no symptoms until the damage has occurred. sees his

opthalmologist every 4 months.

fought the Methotrexate injections until he started seeing results.

Once he wasn't hurting so bad and could play and run with his younger brother,

he felt very different about his meds...now he wouldn't miss a dose because he's

afraid he'll hurt again like he used to.

Stick with this group, they amazing and so helpful! They ease you into being a

mom with a child who has jra...always there to answer your questions, give

experienced advice or just offer their prayers. I would be lost without them!

12 poly jra

From: wynhama@...

Date: Thu, 10 Mar 2011 15:21:31 +0000

Subject: Re: Intro

Michele,

I have 2 kids with arthritis. Both were age 10 when they were diagnosed.

I know the meds are scary, but her disease is scary. The goal in pediatric

rheumatology is to " put the fire out " with meds, then wean off the meds. This

gives the best chance of putting the disease into remission and stopping joint

damage. Without proper treatment her knee is getting more damaged.

I know very little about iritis. I do know that it can be very serious. From

what I can remember it can even cause blindness. Is your opthamologist a

pediatric arthritis specialist? If not you need to find one quickly.

I know dealing with preteens and teens can be tricky. Unfortunately, it is our

job to protect them and advocate for them until they are adults. Sometimes we

have to force them into things they don't like. I had to hold down my 10 yo son

on several occasions to give him injections. The guy couldn't walk he was in

such bad pain, but was scared to death of the injection. Once he realized how

wonderful the med was, he started to self inject and we worked together to make

it as comfie as possible.

As for the methotrexate. One kid had bad tummy issues and we had to discontinue

it with in a month. The other took it for a year without missing a step. Each

child is different. She really needs some type of disease modifier, quickly.

I would recommend an arthritis camp this summer for you and your daughter. It is

very fun and educational.

Audra

14 poly 07

Peyton 13 poly 08

>

> Hi all. I mostly just wanted to introduce myself - I joined the list a few

>

[Guest guest]

Welcome to the list, Michele. You have found a great source of info and I have

to say I agree with all of the responses you have received. Just want to add

that when my son was on mtx he took it orally - no injections and he had

wonderful results. That being said, many people find that the injections give

better results but I did want to let you know that taking it in pill form could

be an option. As has been stated, it does sound like moving on to DMARD's is the

way to go. Your daughter may even be able to continue with dance once you get

the disease under control. I know your daughter may not like it, but she is a

person with a chronic illness, not just a bad knee. Treating the illness is what

will keep her moving and she may even make it to remission if she continues to

treat. I know my son was upset when the dr told him that disease was something

he would be dealing with one way or another for the rest of his life.

One other thing, if you do begin mtx make sure she takes folic acid along with

it. This will help to keep side effects to a minimum. The worst side effect

had was mouth sores, which he kept under control by rinsing a few times a

day with Listerine. Once again, welcome and feel free to ask any questions,

vent when you get frustrated, whatever you need. As you can see, you have found

a supportive bunch! Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Michele Lynch

Sent: Wednesday, March 09, 2011 9:47 PM

Subject: Intro

Hi all. I mostly just wanted to introduce myself - I joined the list a few

days ago. After 2-1/2 years, I guess I am at a point where I am able to

acknowledge that my daughter's arthritis is, in fact, here to stay.

My name is Michele. I live in South Orange County, CA, with 3 children - K

(12), C (10) and M (5), as well as my DH. My middle guy, C, has had a lot

of health problems growing up, but its my older DD, K, who was diagnosed

with pauciarticular (aka oglio) JRA/JIA (our dr says JRA still but I know

the more recent literature says JIA) about 2-1/2 years ago.

Long story short, the arthritis started in her right knee, after about 3

months, showed up in her left knee. It was extremely odd because her

initial knee pain showed up while she was on summer break from dance (K is a

semi-serious ballerina who dances nearly daily, even now - the studio closes

the last 2 weeks of August). We just couldn't figure out how she hurt

herself! Once we went through the rigmarole of seeing every dr. who might

have an interest in her knee, she was finally diagnosed with pauci. She

initially had a steroid injection, which resolved the problem for a time.

But her knees swell up and hurt from time to time, always ache/are stiff in

the " cold " winter months as well as when it is foggy. The dance seems to be

a sort of PT for her as she is exceedingly limber and in great shape - we

saw a physical therapist a couple times, but there wasn't much she could

really do for K. Right now, we only treat as needed with naproxen.

The first casualty of this lovely disease was her aspiration of being a

professional ballerina.

As I understand is not uncommon with girls with her version of JRA, she also

has the accompanying eye issues. Unfortunately, that seems to be where her

arthritis is the most active. She has pretty steadily used predforte since

we first started seeing the ophthalmologist. So far, no signs of the list

of horribles that come up with long term predforte use. I think there might

have been one 8 week period when she was off the drops. Anyway, most

recently, in January, we found out that the " good " eye was in the worst

flare up in either eye that she has had since she was first diagnosed.

Of course, it doesn't bother her at all since iritis is pretty symptomless

unless its really, really bad.

We had to switch rheumatologists in January as well. Our dr., who we really

liked and who was in our corner, left CHOC for Kaiser. Now we see the head

of the rheumatology practice at CHOC. K doesn't like her as much - she

treats her like a kid with a Disease rather than a kid who happens to have a

bad knee. She has been talking to us since January about using

methotextrate. K is terrified because the steroid shot was an incredibly

painful, horrible experience for her. I'm terrified because.... its

methotextrate.

I guess this leads to my questions of the moment. Is it unusual for the

disease to take this course? Do drs. typically prescribe methotextrate for

kids with iritis rather than major joint issues? And what should I be

asking if K's eyes don't resolve and the drs. start pushing systemic drugs?

I'm looking forward to " meeting " you all and learning more about how to

handle K's JRA as she crosses into adolescence.

Michele - mom to K - pauci & iritis

[Guest guest]

Thanks Michele. See below...

Michele wrote:

> Welcome to the list, Michele. You have found a great source

> of info and I have to say I agree with all of the responses

> you have received. Just want to add that when my son was on

> mtx he took it orally - no injections and he had wonderful

> results. That being said, many people find that the

> injections give better results but I did want to let you know

> that taking it in pill form could be an option. As has been

> stated, it does sound like moving on to DMARD's is the way to

> go.

Yes, the pedi rheum. did say we may be able to try an oral med. Its

probably the best place to start, given how scared silly K is about shots

right now.

> Your daughter may even be able to continue with dance

> once you get the disease under control.

Well, she does dance 5-6 days/week right now. The disease has not yet

slowed her down much! But as it appears to be getting worse, rather than

going into remission as we have hoped for the past 2 years, it is clear that

her body does need some additional help. Who knows. Maybe if we can

trigger remission, she can pick her dreams of being a professional back up.

> I know your daughter

> may not like it, but she is a person with a chronic illness,

> not just a bad knee.

Yes. Wise words. *I* don't like it. I already have a chronically ill son

(GERD and the long term consequences thereof, asthma, sleep apnea, learning

disabilities). As I told my DH tonight, I guess its time to face the fact

that we hit that particular jackpot twice. Lucky us.

> Treating the illness is what will keep

> her moving and she may even make it to remission if she

> continues to treat. I know my son was upset when the dr told

> him that disease was something he would be dealing with one

> way or another for the rest of his life.

Yes. Sigh. Hard to see them face that reality.

> One other thing, if you do begin mtx make sure she takes

> folic acid along with it. This will help to keep side effects

> to a minimum. The worst side effect had was mouth

> sores, which he kept under control by rinsing a few times a

> day with Listerine.

Good to know. She already takes fish oil and a calcium supplement. Folic

acid can't hurt.

> Once again, welcome and feel free to ask

> any questions, vent when you get frustrated, whatever you

> need. As you can see, you have found a supportive bunch!

> Michele ( 23, spondy)

Thanks again.

Michele (K, 12, pauci)

[Guest guest]

wrote:

> I tend to be a bit blunt.

And that is OK.

> If your eye doc has prescribed

> only steroid drops for all of this time, I would run away as

> fast as I could. Uveitis can make your daughter blind, and

> the drops can do lots of damage. (like glaucoma and

> cataracts) Some children have to be on heavy duty meds only

> for their eyes. Find yourself a good ped eye doctor who has

> experience with uveitis.

Well..... Thus far he has been very careful with K. And we do see the local

expert who sees a lot of these kids. The uveitis has been very mild to trace

and responsive to the predforte. We have been talking methotextrate for

about a year. The new rheumatologist is pushier - and I'm coming to accept

that is probably a good thing.

> Go to this website

> http://www.gabriellesvision.org./parents/parents.htm and

> click on FAQ. Dr. is a guru of uveitis and is in

> Boston. He is answering questions on the FAQ. You may even

> email him and ask his opinion of your daughter-but he can be

> more blunt than I am.

Thanks for the link. I will check it out.

> My daughter was 10 when she got systemic jra. Many times she

> had no option on what medications she was on. As a mother,

> it is my responsibility to make those tough decisions so she

> can grow up strong and healthy. She didn't like it, but she

> got shots. Even daily painful shots. It was non debatable.

> I am the momma and she the child. And I love her more than

> the earth itself. Take care, (n, 22, systemic)

Absolutely. I couldn't agree with you more. The worst part of being a parent

is having to make those hard decisions. And then follow through on them. I

was discussing all this with K tonight, and told her, among other things,

that this decision was as hard for DH and I as the first time we decided our

son, C, needed his first fundoplication. Scary stuff.

It does break my heart, as I'm quite sure it does all everyone here.

Michele

[Guest guest]

wrote:

> Cant speak to the iritis, uveitis issues, but methotrexate

> will treat the disease, rather than just being a bandaid like

> th naproxen, which does not.

I like this analogy. Thank you.

> Methotrexate has been around

> since the 1940's and is a very safe drug. The literature you

> are reading about it only applies to the high doses given to

> cancer patients. Our kids take a miniscule amount compared to

> that. It is very safe. It has made a difference for many of

> our kids. The eye disease is of concern. You really don't

> want her on predforte drops long term. Most kids eye docs

> move on to something that will control the disease activity,

> which is usually methotrexate to begin with. I think it

> sounds like it is about time to go that route.

That is certainly what our experts are saying. It is reassuring that

everyone here is comfortable with that.

> If you think of it as preventing terrible damage from

> happening (using the methotrexate, or MTX as we call it

> around here), you would rather treat with it than not.

> Relying on the naproxen is not going to stop further damage

> from occurring.

> Its late and I'm rambling, was just up with the neighbor

> across the street whose husband is slowly dying.

I am so sorry.

>So forgive

> me if this doesn' t make a lot of sense right now. Hang in

> there mom, you have come to the right place for lots of

> support and experience with this 'lovely disease'.

> (RN) adult onset RA, mom to Rob, 21, juvenile

> ankylosing spondylitis (spondy)

>

>

Thank you. The warm welcome from everyone has made such a difference today.

And given me much to consider.

Michele (K 12 pauci)