Michele

[Guest guest]

Hi, . Sorry I did not get back to you sooner, I was out of town at

a volleyball tourney for my youngest, and then off work yesterday.

Anyway, enough about me and my delightful schedule! LOL

is also negative for HLA-B27. He was diagnosed based on symptoms.

He did have PT at the beginning, but the physical therapist I am working

with from the accident mentioned that he should probably have some more

to keep the back limber. He felt that a planned course of PT that Chris

could follow would be good. was diagnosed with spondyloarthropy,

but also anklosing spondilitis. So the way I understand it is they are

basically the same. The juvenile has to do with the age at diagnosis, so

technically would be considered JAS. That is what I have seen

written as his diagnosis. Have I given you the website

www.spondylitis.org <http://www.spondylitis.org/> ? There is

information there that may help.

was started on sulfasalazine when first diagnosed with the spondy.

That is usually the first drug of choice with spondy. He took the max

dose of 3000 mgs a day, along with 800 mgs of Celebrex. Didn't work too

well. He then was switched to MTX which worked wonderful for him. He was

able to get off the Celebrex which was an important goal as the dr felt

that getting off an NSAID was important.

There can be organ involvement with spondy, but that is most common with

people who are positive for HLA-B27. I would also recommend that she go

for slit lamp eye exams as with pauci jra. That is the one dr that I can

still get to go to.

Hope this helps, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Thursday, February 15, 2007 4:18 AM

Subject: RE: Miche

Hi ,

I hope you are feeling a little better each week and that the PT is

bringing positive results for your neck and back.

It is interesting that, for the second time, you suggest considering

spondy for ...when she went to see the immuno today for her

CVID,the rheumy wanted to see her,,,based on her issues with

tendonitis/bursitis, her current ongoing problems with hips and knees,

and previous with feet,,,oh and her low back and pelvic area, she said

it appears 's problems all seem to involve inflammation of sites

of insertion for tendons and ligsments but she tested neg before for

HLA127 (?) so feels likely seronegative spondyloarthropathy; She is

repeating some lab work...but if you could please share again with me

about what has/has not worked...both meds and therapies...and any

articles you can refer me to? Most I found referred to podiatrry.

How is doing?

Any info and inpt would be deeply appreciated!

(, 16, CVID, fibro, spondy?, migraines)

" Tepper, Michele " <MTepper@...

<mailto:MTepper%40ftportfolios.com> > wrote: I am doing better - I am in

physical therapy for my neck and back. I

have a neck sprain and because of everything I was doing, it was not

healing properly. I still have pain and stiffness. I am amazed at what I

cannot do, that I should be able to do, because of the fact that I am

" guarding " as the therapist says, and not using my muscles properly.

Plus, here at work, I need to look down at reports and then up at a

computer screen. It will just take a bit longer to heal than I had

hoped.

About 's hips, is the dr feeling swelling in the joints? The

reason I ask is that began to complain of hip pain and when the

rheumy examined him, she found that there was not swelling in the hips,

but rather in his pelvic rim. This was another step towards the

spondylitis diagnosis for him. How she could tell or feel a difference I

do not know, but she did. I remember her moving his legs around with him

lying down and then feeling on his back. He was then put on a DMARD that

is usually good for spondylitis, sulfasalazine. ended up on

Methotrexate, as the sulfasalazine was not effective. But I believe

getting the diagnosis helped move his treatment forward in a more

aggressive manner, from the Celebrex he was on prior to that. Just

something to think about.

Hope you are able to sort out the dr situation soon, Michele ( 19,

spondy)

________________________________

From: <mailto: %40>

[mailto: <mailto: %40> ]

On

Behalf Of nancy barnes

Sent: Tuesday, February 06, 2007 12:04 PM

<mailto: %40>

Subject: Re: Michele

,

somehow I missed the news about your auto accident and trouble with

not wanting to take his meds...I am so sorry you are going through

this added stress; how are you feeling? As far as - he is not

wanting to take meds? It is so difficult when they reach the age of

independence and make choices that are not healthy for them...I hope

that his girlfriend will be able to persuade him to take better care of

himself. It must be tough watching him make poor choices. Hopefully this

is a (short) phase.

Regarding ped rheumys, actually, 's rheumy is at UCLA but she is

the one that first kept blaming residual effects of the meningitis and

now the food...she seems unable/unwilling to choose a treatment path,

other than the Mobic, and 's hips are worse than 2 months ago and

significantly worse than when she fisrt began seeing her last April. I

think it is time for a rheumy who will be more pro-active as I cannot

continue to watch her suffer...worse now than a year ago.

Anyway, thanks for your input, for listening, and I hope you are feeling

better soon.

Take care,

( & 16)

snooksmama@... <mailto:snooksmama%40juno.com>

<mailto:snooksmama%40juno.com> wrote: Hi Michele

I wanted to comment, I am so sorry to hear about your accident. Are you

just beat up all over or was one particular area hurt? I hope that you

are feeling better.

I hope that decides to take his meds and is back on the road to

feeling better. Hopefully, if he does decide, he will be controlled

quickly.

Rob is doing great. His knee is improving daily. He had a recheck at the

doc yesterday and all looks good.

I got the all clear from my pneumonia (I had a few weeks ago) and so

yesterday I was able to start Humira. I don't know if it is a

coincidence, But I had a better morning this morning.

I was so sorry to hear about your daughter. You have had a lot going on.

Please take care of yourself along with all the others you look out for!

I'll keep you and your family in my prayers.

and Rob 17 Spondy

HI . is doing ok. We are still in the discussion phase.

Things have been a bit goofy at home - I have been having difficulty

since the accident I was in, and have just started physical therapy. I

hope it does the trick. My dh has been having a lot of problems with his

gout/ possible RA, and now his depression/BP has reared its ugly head,

so that makes getting him to take care of himself difficult. On the plus

side, I did talk to when his girlfriend was around (just another

of my gentle reminders about how much better he might be with meds) and

she is on my side. She told him " Yes, take your meds. " So perhaps that

will help! LOL

Good news to report, my oldest has finally found a job! She moved back

home last fall, after the job in Milwaukee did not work out, and has

been off for quite awhile (she had some depression issues as well) but

is feeling good and now working. I am so glad of that!

Thanks for asking after Chris. How is Rob doing? How are work and the

college plans? We are starting now with the youngest one - she was

looking at a school in Denver (Yikes!) and is also looking at Marquette

where went (much closer to Chicago!). Open houses here we come!

Michele

[Guest guest]

Can I put in another word against. Just because they look 'cool" on an 18 year old doesn't mean they look cool when you are 70 or even 40. you can't easily take them off. Krisitinesnooksmama@... wrote: Michele He's getting them at the very tops of his arms so that a short sleeve shirt will cover it. He's already checked out the FBI, CIA and ATF websites and found that they don't have a problem with tattoos. Of course, there is no guarantee that they don't change that rule by the time he is out of college

and applying for those agencies! He says he is intent on his purpose. Of course, I"m praying for the opposite.... Wish me luck and Rob 17 Spondy (who is 18 in YIKES 10 days and letting EVERYONE know it!!)

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Can I put in another word against. Just because they look 'cool" on an 18 year old doesn't mean they look cool when you are 70 or even 40. you can't easily take them off. Krisitinesnooksmamajuno wrote:

MicheleHe's getting them at the very tops of his arms so that a short sleeveshirt will cover it.He's already checked out the FBI, CIA and ATF websites and found thatthey don't have a problem with tattoos. Of course, there is no guaranteethat they don't change that rule by the time he is out of college andapplying for those agencies!He says he is intent on his purpose. Of course, I"m praying for theopposite....Wish me luck and Rob 17 Spondy (who is 18 in YIKES 10 days and letting EVERYONEknow it!!)

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

[Guest guest]

Gotta love those almost 18’s! “I’m

an adult now!” LOL Unfortunately that does not stop you from making some

pretty strange decisions. Darn those government agencies – you think they

would have moms in mind when they make there rules about such things! LOL No

support there, I see. I will wish you lots of luck and e is right –

what looks good on an 18 year old body may not cut it on a 50 – 60 –

70 year old one. Michele

From: [mailto: ] On Behalf Of snooksmama@...

Sent: Monday, April 16, 2007 4:57

PM

Subject: Michele

Michele

He's getting them at the very tops of his arms so that a short sleeve

shirt will cover it.

He's already checked out the FBI, CIA and ATF websites and found that

they don't have a problem with tattoos. Of course, there is no guarantee

that they don't change that rule by the time he is out of college and

applying for those agencies!

He says he is intent on his purpose. Of course, I " m praying for the

opposite....

Wish me luck

and Rob 17 Spondy (who is 18 in YIKES 10 days and letting EVERYONE

know it!!)

[Guest guest]

Michele,

I am reading this post and laughing about the Laundry. SMELLY we could say as college kids will freshen up clothes if it looks clean. Or turn it inside out and see if the other side is cleaner. With if she wears it 3 hours it is dirty to her. lololol. But kid's will put clothes in a Microwave to dry them as well lolololol. has become a cleany person. BUT We have to wonder about her lololol. She will sleep in my bed if she has not changed her sheets in 2 days. lolol. Umm I FEEEEL for her husband when that does happen. lololol.

RobbinGet a sneak peak of the all-new AOL.com.

[Guest guest]

Hi , sorry about the delay in

replying – I was out of the office the last few days of last week.

Anyway, my thoughts on the dorm room – when went away she and her roommate

received each others contact info and spoke on the phone a few times before

leaving for school. They were able to work out who brought what and which bed

each preferred. Hopefully that will be the case with Rob and he can let the

roommate know he needs the lower bunk. The other alternative is to get there

first and lay claim to that bed before the roommate shows – however that

might be difficult to time. LOL  I think the first idea is his best bet. If not

definitely a call to the dorm office would not be a bad idea.

Neither of the kids got the meningitis vaccine.

When was going it was new and the ped recommended it but said the school

would give it out (it was not covered by our insurance at that time). After freshman

year, I did not think to remind her about it and I do not believe she got it. Chris

did not go away and we did not have him get it, although in hind sight we probably

should have. I will have Jenn get it next year.

Now Rob may be joking about the laundry issue,

but I have seen/heard of stranger things than hanging things out to air. Many

is the time my older kids will “freshen” a piece of clothing in the

dryer with a softener sheet. Especially and something he may have picked

up from the floor and he is not sure of the last wear date on the item. I try

to catch as much as I can, but even the most vigilant of moms can miss things.

Just be sure to get Rob a hamper that he can carry as a laundry bag (those mesh

ones are nice, used hers a lot) and send him a roll of quarters from

time to time in his care packages. That is what we did for and she would

really only “save” her laundry for about the ten days or so before

she knew she was coming home. Then she saved her money and carried home a

hamper full. Good thing about Rob and the showers. That will certainly help to

keep the odors at bay! LOL

Sounds like the excitement is really

building for you guys! When is the big day that he leaves? It will be hard, I

know, yet so exciting for Rob. Keep us up to date on how it all goes, Michele

( 20, spondy)

From: [mailto: ] On Behalf Of snooksmama@...

Sent: Thursday, July 12, 2007 4:10

AM

Subject: Michele

Michele

We went to his dorm and got to see one of two rooms he will actually be

assigned to. When choosing a room, he was offered a 2 bed room with a

bath, or a one bed room that uses a community bathroom. He wanted to have

the bath. Well, what they DIDN'T tell us is that the 2 beds are BUNK

BEDS! I was appalled. Not only if he gets the top bunk and has trouble

climbing up there, but what if he inadvertantly falls out of bed and

damages his chest, which will be at risk for injury during the next 2

years?? It really upset me. I hope he gets an understanding roomate. I am

thinking I will call the dorm office tomorrow and talk to them about it.

Did your kids get the meningitis vaccine before they went away to school?

I am thinking he needs this. Unfortunately, at his peds checkup last week

I forgot to ask! So I have a call into them as well. He sees the rheumy

on the 25th and I will get his take on this also.

We toured the dorm when we went up to the college Tuesday, and when we

went in the laundry room, Rob said, I won't be using this..and I said,

WHAT? He says, well, I'll just bring it home and you will do it. I said,

I don't think so!! Today he claims he was pulling my leg. He said that he

won't wash his clothes, he'll just hang them out the window to get the

smell out. I, of course, was appalled and he claimed to be joking....I

told him, well, if you do that, you won't have to worry about a roomate,

because if they have any sense of smell they will want to go elsewhere...

Needless to say, I feel for them because Rob earned his nickname well,

Rob the Slob!

At least he LOVES to take lots of showers!! That is his strong suit..he

has good personal hygiene!! Sometimes he takes 3 showers a day...hence

the request for a room with a bath!

and Rob 18 Spondy

[Guest guest]

How are you doing today ? Sorry I am

so late replying, my hubby and I tried to go to the NASCAR race in Michigan

this weekend (rained out 2 days in a row, the parking lot was a mud pit), and I

have just gotten back to check my emails.

I have not heard that song yet (I’ll

bet Robbin has, LOL) but I can just imagine. Those country songs can really hit

a nerve sometimes. I remember crying when the oldest left. You know they need

to go and yet you want them home. You know he will be fine and yet you cannot

stop worrying. Give him a call (not too many!), send a care package (putting

those together always made me feel better), and pray, pray, pray!

Sending you lots of hugs, let us know how

its going when you can, Michele ( 20, spondy)

From: [mailto: ] On Behalf Of snooksmama@...

Sent: Saturday, August 18, 2007

9:32 AM

Subject: Michele

Michele

Thank you for your kind thoughts and prayers. You are such a sweetie.

I'm so excited for Rob leaving for college; he is SOOOOO excited, so I'm

just concentrating on that. Yesterday he asked me if I was going to be

alright without him. I said I was planning on crying next week!

So, this morning, I am cross-stitching like mad (a gift for a wedding

that is TODAY), and watching CMT (Country Music Television). I watch it

rarely; I am more into Christian music, but hubby likes country. Anyway,

I'm sitting there watching videos and stitching away and on comes

Ray Cyrus. Have you heard his new song? Ready, Set, Don't Go....Well,

there went the plans of crying NEXT WEEK! I went into the other room and

told hubby, doggone that Ray!!! The video is quite touching and the

words are excellent, but I just couldn't cope with it right now...maybe

later....

and Rob 18 Spondy

[Guest guest]

Michele and ,

Yes I know the song well. I also have another song which will get to your heart as well. By the Wilkensons I believe the name of the song is 26 cents. lololol. Even though it is out dated as it costs more than a quarter to make a call now. lolol Some of the words are If you ever get lonely here's a quarter for the call and a penny for your thoughts. Underwood has one out which is called Remember Me. It's where she leaves for College. She calls home to talk with her Mom. She knows it was the best thing for her going. But she wants all of those at home to remember her and not forget her.

..... Sit and listen to CMT ok you will be amazed at what you hear. Country Music hits the Heart. It also can feed the heart as well. It can Comfort as well. I can name a song for anything. I would have to say Country Music would be ahead. lololol.

Remember this ok.... You raised him to this age. We have to let them see the world. The kid's will not stay forever. They will come back. Write Rob every other day. Even if it's just a Smiley face. Have fun with the letter's..... Tape a quarter and a Penny on a piece of paper :-). Mail that one in another one on the front

put open last on the front. lolol. In the last one put you have 1 quarter which means you can call me anytime. The penny is for your thoughts when you do call me. Always remember I am a call away. This will help each day go with Rob in it. When he get's them he will smile and remember times with you and call

You raised him good . My son didn't go away to College. But after College he did go to a different state and stayed for a year. I missed him alot. He didn't call much either. But I always knew if something was wrong he would call me. One thing about a child when they are away.....When something is wrong MOM is the first to know. My son did move back home but he moved out again. He then moved back home and out again lololol. Heck he finally moved back and has not left lololol.

RobbinGet a sneak peek of the all-new AOL.com.

[Guest guest]

Yes, it is!Thanks Michele - it was a wonderful and relaxing weekend.nancy"Tepper, Michele" <MTepper@...> wrote: Funny what you get used to after 30 years isn’t it? We just celebrated 24 ourselves and went away to the NASCAR race in Michigan. LOL Congrats to both of you on your anniversaries. Hope you enjoyed your trip and is doing well. Michele ( 20, spondy) From: [mailto: ] On Behalf Of nancy barnes Sent: Saturday, September 15, 2007 7:55 PM Subject: Re: Time is flying by waaay too fast for me! We are having a wonderful weekend, thank you. It must seem odd I am writing while we are away celebrating...but USC

football is on, so, after 30 years, I am used to it...lol....and really don't mind. # 26 is big too!! Happy anniversay early! Thank you so much for the prayers for . nancy snooksmamainsightbb wrote: I hope that sees results soon!!!! Continuing to pray for her. Congratulations on anniversary #30!! I hope that you are having a wonderful weekend. We are celebrating #26 next month...time sure does fly. and Rob 18 Spondy Re: To:

> , > > big hugs across the Atlantic to you...a lot to handle as > a single parent. > > I have to agree with Beth - I have 3 children, each very > different - if you think it is more than can > handle, give her bits of info at a time so she can take it all > in...you know , so your judgement is best. > > I surely hope the Enbrel is as helpful for as > says it has been for Rob... > > You both will be in my prayers. > > nancy (amanda, 17, poly) > > quacksmum <quacksmum (DOT) co.uk> wrote: > I am not > long home

from Yorkhill hospital. s doctor has > decided that along with enthesitis she has psoriatic arthritis > as > well. anyone else heard of kids having two forms of arthritis? > She > doesnt show anylosing spondy whatever it is so thats good news.... > > Her jaw has fused on one side and she will eventually need her > jaw > reset... her elbows are in a terrible state but she never > complains > much about them. Her hips are bad and it was decided to start > her on > a new drug called etanercept or enbrel i think it is called.... > but > it means 2x weekly injections. within 4 weeks she will undergo > steroid injections in every joint she owns. i played it all down > to > her as i worry that she will freak out. Should i tell her how > serious this all is or do i keep it hush and hope that keeps her > calm? how much

should we tell our children? > > Her condition is critical ive been told but im really lost > now... we > had to stop hydrotherapy as she ws so unwell. all i have done is > cry since i came home and im not really sure what else to do. > > So much else was said but i can only remember bits at a time and > now > is obviously not the time !!! > > (lost all sanity) and Enthesitis and Psoriatic Arthritis > > > > > > > --------------------------------- > Got a little couch potato? > Check out fun summer activities for kids. Don't let your dream ride pass you by. Make it a reality with Autos.

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

I found nine of your messages in the Suspected Spam folder . . . approved them . . . they'll be there now.I don't know why messages get routed there occasionally. . .. We only find out when we go to the webpage . . . Hugs,Rogene

[Guest guest]

MicheleI just posted to about Rob. Did your mom have a knee replacement? I hope that she is doing well.

Did ever get into the rheumatologist? how is your hubby doing? How are you feeling these days?Hope all are well. and Rob 18 Spondy > Hi. I was just getting through all the emails I have had since being> gone for a week. My mom had knee surgery and I was with her. > Anyway, in> my reading, I saw that Rob was having a tough time with some > things and> was supposed to come home this weekend for a visit. Did that end up> happening? Or did I miss a message somewhere in the over 100 I > was going> through LOL! Please post when you can about how Rob is doing. Thanks,> Michele ( 20, spondy)> > > > > > > >