Chris

October 26, 2004

Larry, wow, what leaps and bounds your confidence has attained!

Thanks for sharing... no, it's not gloating, it's sharing your joys

and successes.

admiringly

On Tue, 26 Oct 2004 13:31:10 -0500, bchief <bchief@...> wrote:

>

> Hello and Alice,

> Oh yeah it really does feel good getting that bandage off.

> I got my fourth mapping yesterday and it was very successful. I used the

phonne today with my phone after a dare with one of my friends. It was

wonderful! I'm sorry to be gloating so much, but the more I find out I can do,

the more excited I get. It's like my personality has changed for the better.

Larry

>

October 26, 2004

Larry,

How has your CI affected your mobility? Do you find traveling outdoors (i.e.

hearing environmental sounds) easier?

CI candidate awaiting insurance approval and surgery date

October 26, 2004

Too bad you are not a fly around dentist for us CI folks across the country!

Re: Chris

>

> And so good of you, , to get that tooth fixed. You know what

> they say: " ignore your tooth, it will go away. " A three-sided filling

> on the same tooth took your dentist 2 hours, oh dear, that would take

> me about 20 minutes. Unless he was a dental student? Ask for the

> Valium or the nitrous oxide+oxygen conscious sedation next time!

>

> Chris

>

> On Mon, 25 Oct 2004 19:30:23 -0400, M Jansen <nucleus24@...>

wrote:

> >

> > Hi

> > Any reason why your bandage has had to remain on for so long? I took

> > mine off the day after surgery - per the surgeon's orders. You can't

get

> > the incision wet or anything like that, but no way did I have to keep

the

> > bandage on for very long. I'd check if I was you.

> > BTW I celebrated your surgery by spending 2 hours in a dental chair

> > getting a filling on 3 sides of the same tooth, and might have to get

> > root canal on it anyway. Get me the valium!!

> >

> > Nucleus volunteer

> >

> > Good luck on your surgery. I just had mine last Wednesday. No

> > complications. Now I'm waiting for the activation... sometime in

> > November. I can hardly wait. I'm sick of wearing this bandage

> > turban... off it goes on Tuesday morning! I'll have nice looking

> > sutures for Halloween...!

> >

> > ________________________________________________________________

> > Speed up your surfing with Juno SpeedBand.

> > Now includes pop-up blocker!

> > Only $14.95/ month - visit http://www.juno.com/surf to sign up today!

> >

October 26, 2004

Larry,

Are you able to localized sounds? Know where people are when they talk to

you?

December 3, 2004

Hi,

So glad your incision is healed and you found a pair of glasses with

thinner " arms " . (They are called " temples " . ( My hubby used to sell eyeglass

frames! LOL) Wishing you all the very best at hook-up!!!

) Jackie

December 3, 2004

Wha? Me back working, oh yeah, baby, you bet! I was back at work in

four days. I took the fourth day off just because I didn't see any

point in going back to work sooner... ha ha and elected to " play

hooky " on that day and did some errands all day, mowed the lawn, raked

up some leaves... that seems like a life time ago. Six weeks ago!

And gosh... only less than five days to go! The anticipation is too

much. I find myself emotionally liable to cry at unexpected moments;

someone earlier said it was like being pregnant, and waiting, waiting

till the nine months were over at last. Good analogy. I think nine

months would be worse than seven weeks... so much to be thankful for.

implanted 10/20

On Fri, 3 Dec 2004 01:55:42 -0500, M Jansen <nucleus24@...> wrote:

>

> Hi

> LOVED your letter about your parents accepting you as you are. How

> nice. And glad you figured out the eye glass problem. Side bars is what

> the side bars on glasses are called. Imagine that.

> I'm sure you succeeded way beyond what your parents could have

> anticipated when they were given the news at your birth. So I'm also

> sure you will do very well with the implant. Seems 2 months between

> surgery and tune up.

> Are you back working? Did you hear about the guy who chewed on his

> pillow while he slept and woke up feeling a little down in the mouth?

> Counting the days, kiddo.

>

> Nucleus Volunteer

>

> From: Lehfeldt <Lehfeldt@...>

> Subject: oh! the area of irritiation!

>

> Hi guys,

>

> Remember last week when I inquired about areas of irritiation where

> one wears glasses on one's ears being too close to the incision area?

> Well, I simply changed to other glasses with much more thin glass ear

> pieces (what ever are they called?), and that allowed the incision

> scab to breathe and knit more successfully. I also dried the area

> carefully in the morning after my shower, and made sure to dab some

> hydrogen peroxide with a Q-tip to disinfect the incision areas, and it

> has healed completely in a few days!

>

> So much relieved, I am...

>

> implanted 10/20, waiting, waiting till 12/8

>

> ________________________________________________________________

> Juno Gift Certificates

> Give the gift of Internet access this holiday season.

> http://www.juno.com/give

>

December 6, 2004

Best wishes for a happy hook up day, Chris! Remember, if you don't

like how you are hearing at first, or what you are hearing, it

usually does get better with time and more mappings. I, for, one

will be looking forward to reading how it goes for you when you are

up to posting. Good luck to you!

Patti

Surgery Day 11/25/02 (What A Day!)

Hook Up Day BWP 1/2/03 (A Happy Day!)

3G 1/31/03 (An Even Happier Day!)

December 7, 2004

Wow -- your activation is only 24 hours away! Good luck! I look forward to

reading about your experience.

Surgery date: 12/22/04 (15 days and counting!)

Activation date: 1/18/05

December 29, 2004

Hiya,

Glad you enjoyed the holidays!

Just for your information. I have the 3G - (BTE) and I have ACE 1800

in all four slots! Two in one processor and 2 in the other. So , ask your

audi again.

Also, may I suggest you try your maps for at least a full day instead

of 4 hours? Better yet would be a few days to a week with each map. It might

give you a better idea of how you are hearing.

Hope this helps.

Jackie

January 2, 2005

How did you go about having these tests done?

Grace

Dawn Tollefson <dawn_t@...> wrote:

We did an organics panel with metametrix, urine and

plasma to help us find out what his deficiencies were.

We found he had a serious lack of magnesium, in

addition he had mineral transport problems, low in

amino acids etc. hope this helps because it certainly

helped him.

--- Daggett <onecsd@...> wrote:

>

> Dawn I dont know what a organix panel is?

>

> jennifer werner <bruzedviolet@...>

> wrote:

> You know some pain meds can cause seizures.

>

> Daggett <onecsd@...> wrote:

> Thanks I think my seizures are related to alcohol

> and prescribed pain meds. But I've lost my job

> because of it. Do you think I should hire a really

> good nutrionlist to study my situation? Blood

> chem??

>

> Dawn Tollefson <dawn_t@...> wrote:I agree

> with Grace, do a organix panel and find out

> what you may be low or high in and supplement. My

> son

> had rare seizures but became clusters. Once we went

> on meds, dilantin, my son's seizures became more

> often. Once we started supplementing with

> magnesium,

> bcomplex to name a few, his seizures stopped and we

> haven't had them for 155 days.

> Dawn, mom to Noah 8yrs.

> --- Grace <foxyfoxgrace@...> wrote:

>

> >

> > With 2 seizures in 4 years, my advice is unless

> you

> > are feeling pretty bad or it starts happening more

> > often, I would consider supplements or diet before

> > meds. Good luck in whatever you decide to do.

> >

> > Grace

> >

> > onecsd <onecsd@...> wrote:

> >

> > I have had two seizures in about 4 years. The

> first

> > one was

> > after waking up after taking NyQuil. The next one

> > was after taking

> > loritab for a shoulder injury and having a drink

> of

> > wiskey, now I

> > have been diagnosed with epilepsy, and has

> affected

> > my life in a

> > very neg way. the doctor has prescribed Lamictal.

>

> > Any info from

> > anybody would be a great help. Thanks please

> help

> > me

> >

January 2, 2005

I had these test run at the request of our DAN dr. I

knew very little about this type of testing prior to

her ordering the tests and reading them. They were

very beneficial to figuring out some of the pieces of

my son's puzzle. Many times the labs have dr.'s on

staff that can order the test, I'll check on it, you

can check on it also. This test was helpful in

confirming what my son needed, I have been more

vigilent about his supplements because of the testing.

--- Grace <foxyfoxgrace@...> wrote:

>

> How did you go about having these tests done?

>

> Grace

>

> Dawn Tollefson <dawn_t@...> wrote:

> We did an organics panel with metametrix, urine and

> plasma to help us find out what his deficiencies

> were.

> We found he had a serious lack of magnesium, in

> addition he had mineral transport problems, low in

> amino acids etc. hope this helps because it

> certainly

> helped him.

> --- Daggett <onecsd@...> wrote:

>

> >

> > Dawn I dont know what a organix panel is?

> >

> > jennifer werner <bruzedviolet@...>

> > wrote:

> > You know some pain meds can cause seizures.

> >

> > Daggett <onecsd@...> wrote:

> > Thanks I think my seizures are related to alcohol

> > and prescribed pain meds. But I've lost my job

> > because of it. Do you think I should hire a

> really

> > good nutrionlist to study my situation? Blood

> > chem??

> >

> > Dawn Tollefson <dawn_t@...> wrote:I

> agree

> > with Grace, do a organix panel and find out

> > what you may be low or high in and supplement. My

> > son

> > had rare seizures but became clusters. Once we

> went

> > on meds, dilantin, my son's seizures became more

> > often. Once we started supplementing with

> > magnesium,

> > bcomplex to name a few, his seizures stopped and

> we

> > haven't had them for 155 days.

> > Dawn, mom to Noah 8yrs.

> > --- Grace <foxyfoxgrace@...> wrote:

> >

> > >

> > > With 2 seizures in 4 years, my advice is unless

> > you

> > > are feeling pretty bad or it starts happening

> more

> > > often, I would consider supplements or diet

> before

> > > meds. Good luck in whatever you decide to do.

> > >

> > > Grace

> > >

> > > onecsd <onecsd@...> wrote:

> > >

> > > I have had two seizures in about 4 years. The

> > first

> > > one was

> > > after waking up after taking NyQuil. The next

> one

> > > was after taking

> > > loritab for a shoulder injury and having a drink

> > of

> > > wiskey, now I

> > > have been diagnosed with epilepsy, and has

> > affected

> > > my life in a

> > > very neg way. the doctor has prescribed

> Lamictal.

> >

> > > Any info from

> > > anybody would be a great help. Thanks please

> > help

> > > me

> > >

February 18, 2005

Thanks, for your good wishes.

I had hoped to have a hook-up like yours, and I really did get it! I

know things are going to be better this second time around. I'm just glad my

marriage is the first and only! I can't imagine the trouble that would be to

do over! LOL

The parking meter being jammed was such a kick for Jeff. Of course, we

had to park in a garage overnight, but even that was a pretty good rate of

$24. I remember paying more than that for 6 hours at a trade show in NY over 10

years ago. So while it is still a fortune to park in NY, there are a few

" bargains " to be had. The 28 hours we were there cost a small fortune, but

worth

every penny. It was really better than some 5 day vacations we've taken!

Tonight it was back to reality. We had dinner at " Chez Burger King " . But I

got a new stove today and still didn't have to cook! LOL Call me spoiled,

but I'm loving it! LOL

Jackie

April 12, 2005

In a message dated 4/12/2005 6:40:17 P.M. Pacific Standard Time,

Lehfeldt@... writes:

Now I'm realizing, paradoxically, what I've missed all those years

just by hearing with the CI today, and that is so much fun. I feel

like a baby -- learning new things every day and taking joy in each

and every one of them.

Thank you for your beautiful words! I feel the same way.

Happy Hearing,

Liesl

April 12, 2005

I was born in Shanghai,China, over 80 years ago, with no hearing and speech.

When I was around eight years old, the family realised that I had " some "

hearing in my right ear. The family hired someone ,from the Shanghai Jewish

School

,to help me to learn to speak. He did an outstanding job! He was totally

dedicated to make sure that I learn to speak well!! An example, at the very

beginning,in the middle of a very hot summer,he made me wear a winter overcoat,

and

wont let me take it off I was able to say " hot " correctly. I went on to study

in the public school, in the internatinal settlement. Lots of foreign nationals

were living in Shanghai, at that time. In 1941 Shanghai was completely

occupied by the Japanese. During the war I studied Civil Engineering at St.s

University in Shanghai. In 1949 the Communists were very close, then and our

family moved on to Israel, and shortly after to USA. I stayed in Israel till

1954, then went on to Los Angeles . Almost immediadely, I got my first hearing

aid(MAICO) for my right ear only. Thru the years I have bought every different

make in the market. The last few years, I had AVR IMPACT, and last year AVR

XP675 which I really loved. Last year I attended the SHHH convention in Omaha,

and shortly after suddenly lost all my hearing in the " good " ear. Now I became a

candidate foir a CI Implant. I had my surgery in Oct.28 at the Kaiser

facility, and activated on early Dec. I had not expected any miracles. I was in

for a

surprise. IT WAS A MIRACLE!!!!!! I am hearing so much better!!!!!! Dr.

Ditirro,the surgeon and Tanner, the audiologist gave me their best!!Now,

I

can enjoy music, and go to the movies, more often!! I am looking forward to a

very beautiful future!!! Moses Katz

April 13, 2005

Moses,

Wow, what a fantastic life story. Thank you for sharing. Shanghai!?

Did you ever learn how to speak Chinese or Japanese -- these are so

difficult languages to speak as they are all in tones, depending on

whom you are speaking with. I've read that a lot of deaf people are

looked down as imbeciles in both societies because they cannot master

the intricacies of speaking the language and " lose face " for everyone

involved in the culture.

Chris

On 4/13/05, chinamoses@... <chinamoses@...> wrote:

>

> I was born in Shanghai,China, over 80 years ago, with no hearing and speech.

> When I was around eight years old, the family realised that I had " some "

> hearing in my right ear. The family hired someone ,from the Shanghai Jewish

School

> ,to help me to learn to speak. He did an outstanding job! He was totally

> dedicated to make sure that I learn to speak well!! An example, at the very

> beginning,in the middle of a very hot summer,he made me wear a winter

overcoat, and

> wont let me take it off I was able to say " hot " correctly. I went on to study

> in the public school, in the internatinal settlement. Lots of foreign

nationals

> were living in Shanghai, at that time. In 1941 Shanghai was completely

> occupied by the Japanese. During the war I studied Civil Engineering at

St.s

> University in Shanghai. In 1949 the Communists were very close, then and our

> family moved on to Israel, and shortly after to USA. I stayed in Israel till

> 1954, then went on to Los Angeles . Almost immediadely, I got my first hearing

> aid(MAICO) for my right ear only. Thru the years I have bought every different

> make in the market. The last few years, I had AVR IMPACT, and last year AVR

> XP675 which I really loved. Last year I attended the SHHH convention in Omaha,

> and shortly after suddenly lost all my hearing in the " good " ear. Now I became

a

> candidate foir a CI Implant. I had my surgery in Oct.28 at the Kaiser

> facility, and activated on early Dec. I had not expected any miracles. I was

in for a

> surprise. IT WAS A MIRACLE!!!!!! I am hearing so much better!!!!!! Dr.

> Ditirro,the surgeon and Tanner, the audiologist gave me their

best!!Now, I

> can enjoy music, and go to the movies, more often!! I am looking forward to a

> very beautiful future!!! Moses Katz

>

April 13, 2005

you are absolutely right about spoken Chinese/Japanese with different

tones. As I have mentioned I started speaking rather late, I concentrated on

learning English. It was not easy, as I certainly miss anything I could not

hear. I did not go to any special school for the deaf, as there were none during

the war days. At the St.s University,Shanghai all courses were taught in

English, and the foreigners and overseas Chinese were exempted from taking

Chinese Language requirements.However, those exempted were required to take a

written Chinese exam prior to graduation. One needed to have a knowledge of

about

2000 Chinese words . Weeks before the exam,I secured a sample from the dean. I

had a private Chinese tutor, and I did not do too well. The day before the

exam, I remembered that I had never looked at the sample,so we went over it, I

did rather badly,so my tutor insisted that I go over, and over until I mastered

that sample. On that fateful day I showed up, and since I was the only one,

the dean, who was at the hall for other exams, forgot about me, so he had to go

back to his office to bring me the exam papers. Evidently he had forgotten

that he had given me a sample. SO I PASSED MY CHINESE WITH FLYING COLORS!! Moses

October 11, 2005

Hi Chris:

If you have been dx with RA, you have certainly come

to the right place to talk with people who have the

same illness. Pain in the feet is very common in RA,

and there is no rhyme or reason as to where the RA

will cause pain on any given day for me, but I do have

pain in much more than just my feet. For me, the foot

pain is in the tops of my feet and up into my ankles.

I also take Mtx, but take all of mine at the same time

once a week - do you know why your doctor has you

spread out the dose? How was your RA dx? For me, it

was with physical exam as well as lab work - RA factor

was positive, and other labs were also indicative of

RA. I was dx 6 years ago, and have been on many

different meds - right now I am on Mtx, Enbrel, Mobic

and Tramadol for it.

Perhaps our moderators, or a, could better

address the question as to why you have pain only in

the bottoms of your feet. It does seem strange not to

have pain in any other joints, and yet have been dx

with RA? Anyway, welcome to the group.

Kathe in CA

--- orioles2324 <orioles2324@...> wrote:

> I've had pain in the bottom of both feet for over 3

> years. I had

> Tarsal Tunnel surgery last summer and then was

> diagnosed with RA this

> past winter. I've been taking methotrexate(2.5mg 3x

> 12hrs apart 1st a

> wk), Prednisone(5mg daily)and Celebrex 200mg daily.

> I can get around

> better but am still limited. Is it common to have RA

> only on the

> bottoms of both feet with no other pain. Where can I

> get information

> on this specific issue and talk with someone who has

> the same illness?

> Thanks!!--Chris

>

Kathe in CA

__________________________________

Start your day with - Make it your home page!

http://www./r/hs

October 12, 2005

Thanks Kathi,

My RA factor was positive as well. The rest of me body is good to

go..save for depression but that's improving a bit more. I don't

know why my Doc speads out the Mtx.

I've improved enough to start getting on line...finally. Before I

just could not focus. thanks for your welcome!--Chris

>

> > I've had pain in the bottom of both feet for over 3

> > years. I had

> > Tarsal Tunnel surgery last summer and then was

> > diagnosed with RA this

> > past winter. I've been taking methotrexate(2.5mg 3x

> > 12hrs apart 1st a

> > wk), Prednisone(5mg daily)and Celebrex 200mg daily.

> > I can get around

> > better but am still limited. Is it common to have RA

> > only on the

> > bottoms of both feet with no other pain. Where can I

> > get information

> > on this specific issue and talk with someone who has

> > the same illness?

> > Thanks!!--Chris

> >

>

> Kathe in CA

>

> __________________________________

> Start your day with - Make it your home page!

> http://www./r/hs

>

October 12, 2005

Thanks Kathi,

My RA factor was positive as well. The rest of me body is good to

go..save for depression but that's improving a bit more. I don't

know why my Doc speads out the Mtx.

I've improved enough to start getting on line...finally. Before I

just could not focus. thanks for your welcome!--Chris

>

> > I've had pain in the bottom of both feet for over 3

> > years. I had

> > Tarsal Tunnel surgery last summer and then was

> > diagnosed with RA this

> > past winter. I've been taking methotrexate(2.5mg 3x

> > 12hrs apart 1st a

> > wk), Prednisone(5mg daily)and Celebrex 200mg daily.

> > I can get around

> > better but am still limited. Is it common to have RA

> > only on the

> > bottoms of both feet with no other pain. Where can I

> > get information

> > on this specific issue and talk with someone who has

> > the same illness?

> > Thanks!!--Chris

> >

>

> Kathe in CA

>

> __________________________________

> Start your day with - Make it your home page!

> http://www./r/hs

>

November 1, 2005

Lori, Eeek. You're a savvy mother to rush her into the ER. Now I've learned

something new today. I don't even give out candy on Halloween because, as a

dentist, it'd be contrary to my principles to give out candy... ha ha!! If I

gave

out toothbrushes & floss, I'd be tricked -- eggs on the windows, etc. -- as

it's happened to me before... oh well, can't please everyone! Thanks for the

warning about the gel bracelets. They're definitely

not safe for consumption! profoundly deaf, since birth, aged 44

surgery 10/04, activated 12/04

glad to be of help chris!!

~ THE SHEPLERS ~

Spike & Lori

, Brit, Kiara, Ruby & Karleigh

" What I've said, that will I bring about

& what I've planned, THAT WILL I DO. "

Isaiah 46:11 â€

+ + + + + + + + + + + + + + + + + +

~ join & read about our family ~

thesheplercrew

January 12, 2006

If you would please also share details of your successful results.

Has anyone had any lab work or significant physical findings using it? So

would appreciate not result oriented data. Donna

January 22, 2007

Liz, dont mine one bit..

Now as for kids turning 18 and becoming adults with JA (or anything else).

First let me speak from their perspective.....

Being 18 means so much to every 18 year old! Yours is no different! It is

tough to be 18. It is tough becoming (sort of) independent. It is tough seeing

the world as it really becomes to an 18 year old. It is tough having JA!

So...when I reached the magical age and no pun on magical but as I became a

so-called adult living in the what is suppose to be an incredible world there

was

no way I could have arthritis in my life. So for me it vanished in my mind

to the point I would not look in mall mirrors or admit what was visibly wrong

with me. I went so far as to tell an elderly woman I was high on acid and

thought my feet were spiders and in my attempt to kill them I injured myself

horribly as she could see and ya know what, she didn't ask anymore questions! I

was happy and once again I didn't have arthritis! I started hiding pillas at

age 10! I avoided docs, therapy, meds and unfortunately found (so called)

friends, a boy friend, a life of fun, fame and acceptance. Unfortunately my new

world included booze, drugs and the wrong, very wrong path...I am not saying

this to scare you moms but rather to hopefully make you see your kids are

going through so much and independence comes with a price. BUT>>>>I learned and

rather quickly that my choice STUNK! and stunk BAD! I found new friends,

started going to the gym, got healthy and eventually realized I was not

invisible

to the outside world nor myself! I called my rheumy on my own, made an

appointment and discussed options. I chose to stay off meds and yes with a

price.

Teens please hear me when I say....think, think, think... I cant tell anyone

what to do, when or how but I can say think before you do..You are somewhat

mature so make mature decisions. Its ok if you dont listen to mom BUT please,

please let your inner voice speak and even if sounds like mom its ok! I

cherish everything my mom said to me, NOW!

Now..parents..your turn to hear me...lol Its hard as I said to live this

life and be a teen and young adult. So much is going on and the decision to or

not to take meds, do therapy, go to the docs, etc is in their minds even when

you think its not. There is an attempt to turn it off but this disease

resides in us like it or not, know it or not, we know its there. More so is the

tremendous desire to simply be normal, if only for a short while...what is

normal to a JA teen is not normal for the normal teen so.....problems occur. But

believe me the mind is working. I did not want to take my meds for fear of

side effects and come on when was the last time you read the insets with meds.

It is frightening. Becoming a young adult is full of enough fears so its

simple to not want to do what you should...I still battle with this as I sure

your

kids will....In their eyes tomorrow ay never come so who cares. Joint

deformity is not occurring now and I hate meds, etc so I am stopping them. This

is

so common for teens, YAs.....I have even said myself that I am not sure what

is worse..deformity or organ failure.....its hard moms and dads so be

patient, hang tight and see what happens. Your young folks are ok and will be

ok,

especially if it is their decision...

Now, if I could go back would I do it differently? I am not

sure.....Maybe... if there were guarantees which as we know there are none....

I know some may disagree and that's ok and I would love for my mom and I to

be able to do a session together at a conference. It would surely blow

everyone away!

Hugs to all and sorry for the soapbox...that what Liz gets for asking...lol

Donna

January 22, 2007

Michele,

Unfortunately I don't think there is anything you can do, as he is legally

an adult. I agree with you, though~ he should see a physician. I'm sure he

is sick of dealing with all of this, but denying that he has a disease won't

make it go away. And I feel for him. As you may recall, has arthritis,

alopecia and psoriasis, so we also have a lot of medical appointments.

I wonder if talking to a young adult might help~~ someone like Donna (Donna,

don't you love being volunteered?!) who grew up before the meds of today

were available and therefore lives with an outcome that might be able

to avoid.

Good luck--- and take notes so you can help all of us when our kids reach

that age!

Liz (, who is 15 today!)

_____

From: [mailto: ] On Behalf

Of Tepper, Michele

Sent: Monday, January 22, 2007 3:11 PM

Subject: Chris

Not sure if anyone has any thoughts, or if I am just looking for a safe

place to vent on this. woke up today and asked me how many Advil

he could take at one time. I said I was taking about 3 myself first

thing in the morning (I was recently in a car accident and am trying to

recover) and 2 later in the day (the dr said I could do up to 1200 mgs a

day for myself for now). I asked him why and he said because every joint

in his body hurts. Many of you may know that made the decision to

stop his med (he had been weaned off Celebrex and was only on

methotrexate before this decision and was doing quite well), and is not

currently seeing a rheumy just his primary dr occasionally. I am so

worried about him. I asked him if he thought that seeing a dr might be a

good idea, and he is quite resistant to it. I am not sure how to force

the issue with a 19 year old young man. I think he is tired of having

problems (he also has been having asthma flares again) and seeing a dr.

But he needs to go. I am so afraid that he will have spine fusion or

joint degeneration that could be prevented. We were told by his ped

rheumy that he will not " outgrow " this type of arthritis, that the

possibility for problems will most likely always be there.

Thanks for listening. Having this list, no matter where we have been in

our journey, has always helped me.

Michele ( 19, spondy)

January 22, 2007

Thanks Liz. I'll keep as many notes as I can! LOL

Actually, what I have been thinking is going back over all the info I

have at home - the pamphlets from the Arthritis Foundation, stuff from

here, print outs from websites like spondylitis.org - and giving it all

to to read. Since he was first diagnosed at 13, we were always

open about everything but over time we have not really gone over the

research now that he is older. I am thinking that maybe if he reads them

now as a 19 year old who must be handling this for himself, he would

understand where I am coming from. You are right about talking with

someone who has similar experiences; his big problem is he has never

wanted to do that before. I will mention it again and see what he

thinks.

Thanks for the thoughts and a Wonderful 15th Birthday to !!!

Michele

________________________________

From: [mailto: ] On

Behalf Of liz smith

Sent: Monday, January 22, 2007 2:51 PM

Subject: RE: Chris

Michele,

Unfortunately I don't think there is anything you can do, as he is

legally

an adult. I agree with you, though~ he should see a physician. I'm sure

he

is sick of dealing with all of this, but denying that he has a disease

won't

make it go away. And I feel for him. As you may recall, has

arthritis,

alopecia and psoriasis, so we also have a lot of medical appointments.

I wonder if talking to a young adult might help~~ someone like Donna

(Donna,

don't you love being volunteered?!) who grew up before the meds of today

were available and therefore lives with an outcome that might be

able

to avoid.

Good luck--- and take notes so you can help all of us when our kids

reach

that age!

Liz (, who is 15 today!)

_____

From: <mailto: %40>

[mailto: <mailto: %40> ]

On Behalf

Of Tepper, Michele

Sent: Monday, January 22, 2007 3:11 PM

<mailto: %40>