Beth

[Guest guest]

Beth, Tell Hannah I am so, so proud of her and honored by her dedication to

" our " cause. Together we can make a difference!

Donna

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

: Obviously we are very proud of Hannah. I think she is mature far beyond

her years. She told me this morning (before I even saw your post) that she is

so excited to have her story go national judging. I said I would be proud too,

how great to have others see your beautiful writing. She said, mom that's not

why, it's because there are too many people in this world who have no idea that

kids can get arthritis and now a whole bunch of people will get to read about it

from someone who does.

Out of the mouths of babes....

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth:

That is such awesome news! I loved Hannah's story, but I love even more

that her story is going to be shared throughout this country. Way to go

Hannah!

and Rob 17 Spondy

Hi everyone:

Don't know if you remember the story I posted a few months ago that

Hannah wrote (called Pain Free Palace) for a writing competition at her

school that was sponsored by our school's PTA. If you remember her story

took first place for the literature category. Well, since I posted her

winning news, her story was sent on to the state (WI) competition. We got

a call tonight that her story took first in the state competition! !!!!! I

can't even begin to tell you how excited she is. She will be invited to

the state capitol for an award presentation. Also her story will now be

sent on for national judging and if she wins there she will be sent to

Washington D.C.

This is very exciting for her. She truly wrote this story from her heart.

I just had to share. I am one proud mom!!

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

beth,

Hey just wondered if you or anyone else has ever experienced a stinging or

zapping feeling on parts of your body when out in the sun. I'm thinking

great am I now allerigc to the sun. It almost feels like a bee stinging me

or something, not sure how else to describe it.

Thanks,

Stacie Hall

>From: " bethlakey " <bethlakey@...>

>Reply-

>

>Subject: Nan: MSH

>Date: Fri, 09 Mar 2007 18:53:26 -0000

>MIME-Version: 1.0

>X-Originating-IP: 66.94.237.54

>X-Sender: bethlakey@...

>Received: from n14a.bullet.sp1. ([69.147.64.115]) by

>bay0-mc9-f10.bay0.hotmail.com with Microsoft SMTPSVC(6.0.3790.2668); Fri, 9

>Mar 2007 10:55:02 -0800

>Received: from [216.252.122.219] by n14.bullet.sp1. with NNFMP; 09

>Mar 2007 18:54:57 -0000

>Received: from [66.218.69.5] by t4.bullet.sp1. with NNFMP; 09 Mar

>2007 18:54:57 -0000

>Received: from [66.218.67.109] by t5.bullet.scd. with NNFMP; 09

>Mar 2007 18:54:57 -0000

>Received: (qmail 73058 invoked from network); 9 Mar 2007 18:53:30 -0000

>Received: from unknown (66.218.66.71) by m45.grp.scd. with QMQP;

>9 Mar 2007 18:53:30 -0000

>Received: from unknown (HELO n25.bullet.scd.) (66.94.237.54) by

>mta13.grp.scd. with SMTP; 9 Mar 2007 18:53:30 -0000

>Received: from [66.218.69.2] by n25.bullet.scd. with NNFMP; 09 Mar

>2007 18:53:26 -0000

>Received: from [66.218.66.85] by t2.bullet.scd. with NNFMP; 09 Mar

>2007 18:53:26 -0000

>X-Message-Info: LsUYwwHHNt0yXrBcsgnqsrh9OE9lYWk10RsouhIld7E=

>Comment: DomainKeys? See http://antispam./domainkeys

>DomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima;

>d=;b=gD8GjLZKrIb6DRl9bdX9w//7oGYqanEDQoy5XYqLNqcttnwwOMG+/HW2EgY\

ucwE+CT9L6TdpOsftQ+LSj8yCl8P/gUT9Zs2MV/MkH0B400HLFiWWF4lrdJNT97eY3Y+R;

>X--Newman-Id: 2040647-m79525

>X-Apparently-

>User-Agent: eGroups-EW/0.82

>X-Mailer: Message Poster

>X-eGroups-Msg-Info: 1:6:0:0

>X--Post-IP: 198.190.246.25

>X--Profile: bethlakey

>Mailing-List: list ; contact

> -owner

>Delivered-mailing list

>List-Id: < .>

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribe >

>X--Newman-Property: groups-email-ff

>Return-Path:

>sentto-2040647-79525-1173466496-staciehall40=hotmail.com@...\

om

>X-OriginalArrivalTime: 09 Mar 2007 18:55:02.0614 (UTC)

>FILETIME=[71AF7760:01C7627C]

>

>Hi Nan,

>

>My MSH is still 8, after two tests done over a two year period. I

>am so much better, so don't let that worry you. You can get your

>HLA tested through LabCorp, most insurance will cover it. If you go

>to moldwarriors.com, you can look at the top navigation for the mold

>tests. The HLA test is just one more piece to a confusing puzzle;

>it may very well help explain why some of us get so sick with

>biotoxin type symptoms.

>

>I had numerous problems before explanting, dizziness, vertigo,

>electrical zappings, numbness and tingling, twitches, hives, fever,

>the list goes on. I got much better and everything had seemed to

>abate after doing Dr. Kold's protocol and the CSM, which I did twice.

>

>Today, I have a renewed tingling in my face, which I am starting to

>think may be a result of moving to a coastal climate with known mold

>problems. The stuff is just everywhere.

>

>So now I have to figure out what to do next. My friend is going to

>ask Dr. Shoemaker about using the sauna, since she has one. I do

>think he is open to holistic treatments, but he has found the CSM is

>very thorough in removing the biotoxins from the colon.

>

>hugs,

>Beth

>

>

>

> >

> > I posted to you a while back, I have low MSH too 8, and feel like

>I am

> > a bit " stuck " in healing. I probably have the same genotype you

>were

> > talking about. I ordered the footbath. How long have you had

>explant

> > and what problems are you left with. I just realized today I have

> > made progress. Before explant I was bumping into walls and very

> > dizzy. That is gone. I still have extreme fatigue, muscle PAIN

>not

> > aches, a general feeling of all over pain, I guess this is

> > fibromyalgia from the biotoxin disease. Anyway, Dr Kolb just gave

>me

> > the antifungal and a ton of supplements and I have been following

>the

> > diet, not even cheating on the sugar but have had a few pieces of

> > bread. I am at a very scary weight of about 115 and at 5'7 this

>is

> > too thin. Write back, love Nan

> >

>

>

_________________________________________________________________

Get a FREE Web site, company branded e-mail and more from Microsoft Office

Live! http://clk.atdmt.com/MRT/go/mcrssaub0050001411mrt/direct/01/

[Guest guest]

Hi :

Chime in anytime you wish! Thanks for your well wishes with the migraines. I feel very bad for her. She won't even let me sit with her when she has these. Believe me that means she is hurting! Snuggling with mom is her favorite past time.

How has your arthritis been lately?

Beth

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth:Just wanted to chime in, so glad that the Imitrex worked for Hannah! I hope that this is the answer and makes life more bearable.

I've only had about 5 migraines in my life, but having experienced these few, makes me truly feel so bad for you and for Hannah.

I also hope that you get to feeling better and that the glucosamine helps. I think it takes a few weeks or more to 'kick in'.

Feel better! and Rob 17 Spondy

Hi :

I heard back from her pain doctor late yesterday. Hannah had been taking 300mg Ibuprofen and 50mg Tramadol at onset of headache and then drinking a can of coke. This has not helped the last several she had. He wants her to try the Imitrex again (25mg). She tried this over the summer and had chest pain as a result. I think I freaked only because of her asthma; I knew this was a possible side-effect. He said to be sure to talk with Hannah about this so if it happens she does not freak out. If she knows it could happen, she will remain calmer. Soooo, we were at the grocery store after school today and sure enough I knew she had one brewing. I can see it in her eyes. We got home about 15 minutes later and I gave her an Imitrex and a coke. She went and laid down for about 1/2 hour, and darn if she did not feel better. We'll see if this

was a fluke or not the next time. About 2 hours later she was feeling totally fine. I will be dropping some Imitrex off at school for her to have on hand there too.

About the hormones, yes, she's young, but let me assure you they are raging! She has not got her period yet, but she is definitely "blossoming" . I myself get menstral migraines about 5-6 times per year. I don't think they are the same as Hannah's though. Hers are more like her dad's. She gets the nausea and the visual disturbances with hers.

I took my first glucoasime tonight. We'll have to wait and see I guess. How long before you noticed a difference?

How is doing?

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraines)

[Guest guest]

Hi Beth,I apologize for the delay as I wanted to respond to your question about flying and migraines...Unfortunately, began her cycle the day we left...so she was in such a bad migraine state, I would not have been able to differentiate if the flying added to the problem...although, it did not seem to. Her hormonal migraine flairs (vs her daily) last almost two weeks now. All I can say for certain is that they did not get worse once we were in the air, either time..they remained the same as pre-flight...don't know if that helps at all. I had a horrible migraine myself the day of our return, but the flight had no apparent impact.When you speak of taking a trip out west, do you mean to California? Please give Hannah a belated congrats on a job well done! I saw the photos you posted and she looks so pretty in her pink dress. You and Dad must be so proud of her. Is she feeling better? I've been out

of the loop, between 's flare and our trip...How iare you doing with your arthritis? (, 16)Beth Yohnk <yohnkmom@...> wrote: Hi : I have no words of wisdom for you about the rash. Everytime Hannah has had a rash since all this began, I've been its not the arthritis (that is really frustrating). Taking pics is a great idea. I do this everytime I

notice swelling and/or a rash as they seem to be present at doctor visits. Just wanted you to know I'm thinking of both of you. Did the flying affect her migraines? We are thinking of a trip out west next year, but having Hannah fly scares me to death with the migraines and the asthma. Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Re: Re: rash and swelling questions - sonia ,thanks for the reference to the pics..She has never experienced this significant of swelling - the rash only lasted a day. The swelling has gone down slightly...and she feels a bit better so will phone dr in a.m., vs urgent care in another state...(she wanted to wait)sonia1md <sonia1md (DOT) com> wrote: ,Your dr. should be able to respond to your call and at least let you know if they would suggest to take her to an urgent care facility or to wait and bring her to them when you get back home.If she still has the rash then you should definately get a

picture of it, along with her swollen ankles. In fact, if you have a digital camera then you could email the pics to her doc in NY which might be very helpful to him/her.I don't know if I am the right person to ask about the rash. Aundrea has had every type of rash you could think of. The rash she has had the most frequent in association with flares has been blotchy and generally has shown up on her face, neck and chest. If you click on the photos section of this site you can find an album labled systemic rash. It will give you an example of different rashes that some of our kids have had.Let me know how things go. Hope she is feeling better soon. (aundrea 11 systemic jra/gerd)> >> > 's ankles began hurting a week ago; two days ago she started > with horrible ankle swelling (cannot see her ankles at all, and she > cannot get her shoes on). > > > > She had a rash on her calves Thursday...when the swelling > appeared...but how long does the rash associated with JRA usually > last? Perhaps it was unrelated? > > > > We are in NY visiting friends...she sees the rheumy Wed., the day > after we return..but if anyone has any insight, I would appreciate > it. This extreme

swelling is unusual for her and I am concerned if I > should be doing something besides having her rest with her feet up?> > > > Thank you for any advice.> > > > > > ------------ --------- --------- ---> > Ahhh...imagining that irresistible "new car" smell?> > Check outnew cars at Autos.> >> > > > > > > ------------ --------- --------- ---> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.> Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

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

new cars at Autos.

[Guest guest]

Hi :

I'm sure you are glad to be home. I read your update from your rheumy and know how frustrating that is. I have been down that road so often with Hannah.

We are actually thinking of going to AZ next year. I have relatives in the Phoenix area that I have not seen in a long while.

Hannah is doing pretty well. We saw the immun/allergist doctor last week and had a great visit. She was negative for CVID, but close to being positive so wants to repeat the test in September when we see her next. She also is going to repeat all of Hannah's IGG levels to see what if anything there has changed. She also had normal FENO breathing test, but an abnormal spirometry breathing test. That was frustrating as she was not showing any asthma symptoms at all. If in September she does have a positive test, she will be referred to an ENT for further causes of her asthma. Does have abnormal IGG levels in addition to the CVID? If I remember right Hannah tested abnormal to 17 out of the 24 panels they test for IGG.

Her migraines are still all over the place. The allergist thinks she have either a hormonal trigger or an environmental trigger. Both are hard to track and hard to really confirm....bummer. I'm doing better. I'm hoping its the glucosamine, but our weather has been really nice too and that could be helping.

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: Re: rash and swelling questions - sonia

,thanks for the reference to the pics..She has never experienced this significant of swelling - the rash only lasted a day. The swelling has gone down slightly...and she feels a bit better so will phone dr in a.m., vs urgent care in another state...(she wanted to wait)sonia1md <sonia1md (DOT) com> wrote:

,Your dr. should be able to respond to your call and at least let you know if they would suggest to take her to an urgent care facility or to wait and bring her to them when you get back home.If she still has the rash then you should definately get a picture of it, along with her swollen ankles. In fact, if you have a digital camera then you could email the pics to her doc in NY which might be very helpful to him/her.I don't know if I am the right person to ask about the rash. Aundrea has had every type of rash you could think of. The rash she has had the most frequent in association with flares has been blotchy and generally has shown up on her face, neck and chest. If you click on the photos section of this site you can find an album labled systemic rash. It will give you an example of different rashes that some of our kids have had.Let me know how things go. Hope she is feeling better

soon. (aundrea 11 systemic jra/gerd)> >> > 's ankles began hurting a week ago; two days ago she started > with horrible ankle swelling (cannot see her ankles at all, and she > cannot get her shoes on). > > > > She had a rash on her calves Thursday...when the swelling > appeared...but how long does the rash

associated with JRA usually > last? Perhaps it was unrelated? > > > > We are in NY visiting friends...she sees the rheumy Wed., the day > after we return..but if anyone has any insight, I would appreciate > it. This extreme swelling is unusual for her and I am concerned if I > should be doing something besides having her rest with her feet up?> > > > Thank you for any advice.> > > > > > ------------ --------- --------- ---> > Ahhh...imagining that irresistible "new car" smell?> > Check outnew cars at Autos.> >> > > > > > > ------------ --------- --------- ---> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.>

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

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

[Guest guest]

hi Beth,I am glad to hear you and Hannah are doing better at this time - I hope it is the glucosamine helping you. We are glad to be home; it was great to see our friend but it is difficult when our kids are not feeling well in their own environment. We are in the process of getting in to see a different, proactive rheumy that Colleen's daughter Caitlin sees but it will take some time and patience. Meanwhile, I am hoping the pics we took of her ankles turns out.My understanding is the abnormal IgG levels are what determine CVID. There are 4 subclasses and she is deficient in 2 (part of the diagnostic criteria) - she also has 623 total IgG, normal range being 842 - 2013. I am not sure what the 24 panels are? unless it is the IgG responses they test under the tetnus and pneumococcal vaccines...her tetnus was normal, her pneumoccal was below normal on all facets. What is a FENO test? We have some moderate

asthma (my eldest child and my twin granddaughters) - 's is only viral or exercise enduced, so easily managed. I don't recall, I would assume Hannah has had a full allergy work up?The difficult thing with the migraines is they often are not just hormones or allergies or any one trigger...as you have probably figured by now. I have been having migraines a lot these past couple of weeks - don't know if it is the stress of worrying about , or the fact that it is a horrible allergy season here in So Cal (next to no rain all season, now frequent winds). 's definitely are hormones and more.Did you ever post Hannah's story? (if so, I missed it) I would love to read it.I hope you and Hannah continue to feeling pretty well and I hope Hannah's asthma stays in check as well. (, 17 in 2 weeks! yikes!!)Beth Yohnk <yohnkmom@...> wrote: Hi : I'm sure you are glad to be home. I read your update from your rheumy and know how frustrating that is. I have been down that road so often with Hannah. We are actually thinking of going to AZ next year. I have relatives in the Phoenix area that I have not seen in a long while. Hannah is doing pretty well. We saw the immun/allergist doctor last week

and had a great visit. She was negative for CVID, but close to being positive so wants to repeat the test in September when we see her next. She also is going to repeat all of Hannah's IGG levels to see what if anything there has changed. She also had normal FENO breathing test, but an abnormal spirometry breathing test. That was frustrating as she was not showing any asthma symptoms at all. If in September she does have a positive test, she will be referred to an ENT for further causes of her asthma. Does have abnormal IGG levels in addition to the CVID? If I remember right Hannah tested abnormal to 17 out of the 24 panels they test for IGG. Her migraines are still all over the place. The allergist thinks she have either a hormonal trigger or an environmental trigger. Both are hard to track and hard to really confirm....bummer.

I'm doing better. I'm hoping its the glucosamine, but our weather has been really nice too and that could be helping. Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Re: Re: rash and swelling questions - sonia ,thanks for the reference to the pics..She has never experienced this significant of swelling - the

rash only lasted a day. The swelling has gone down slightly...and she feels a bit better so will phone dr in a.m., vs urgent care in another state...(she wanted to wait)sonia1md <sonia1md (DOT) com> wrote: ,Your dr. should be able to respond to your call and at least let you know if they would suggest to take her to an urgent care facility or to wait and bring her to them when you get back home.If she still has the rash then you should definately get a picture of it, along with her swollen ankles. In fact, if you have a digital camera then you could email the pics to her doc in NY which might be very helpful to him/her.I don't know if I am the right person to ask about the rash. Aundrea has had every type of rash you could think of. The rash she has had the most

frequent in association with flares has been blotchy and generally has shown up on her face, neck and chest. If you click on the photos section of this site you can find an album labled systemic rash. It will give you an example of different rashes that some of our kids have had.Let me know how things go. Hope she is feeling better soon. (aundrea 11 systemic jra/gerd)> >> > 's ankles began hurting a week ago; two days ago she started > with horrible ankle swelling (cannot see her ankles at all, and she > cannot get her shoes on). > > > > She had a rash on her calves Thursday...when the swelling > appeared...but how long does the rash associated with JRA usually > last? Perhaps it was unrelated? > > > > We are in NY visiting friends...she sees the rheumy Wed., the day > after we return..but if anyone has any insight, I would appreciate > it. This extreme swelling is unusual for her and I am concerned if I > should be doing something besides having her rest with her feet up?> > > > Thank you for any advice.> > > > > > ------------ --------- --------- ---> > Ahhh...imagining that irresistible "new car" smell?> >

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

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center.

[Guest guest]

I chew them up real good..................I like green olives with whole garlic cloves in them.........love that salt...............See what's free at AOL.com.

[Guest guest]

:

I really hope your own flare ends really soon! I feel badly for you and hope the meds you got at the ER kick in shortly.

I actually raised the question a couple of times about a bone density and was told she did not need one because she had a bone scan. I thought these tests are looking 2 very different things. I guess that's one reason I won't go back to the old rhuemy I got tired of her making excuses for everything (i.e. abnormal labs, activity on the bone scan etc.) Very frustrating. She has not had any labs since last September so I'm thinking its time for more.

I let you know what the ped thinks tomorrow. We had her walking field trip today. We ended up wrapping both knees in ace wraps at lunch time, which helped. Luckily I also had her pain meds with. Her teacher was very sweet. When we went to the Historical Museum, she carried a folding chair around with us for Hannah to sit on when she needed it. We are so going to miss her next year!!!!

Beth & Hannah, 10, in much pain after today's field trip

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth sorry about that. I didn't get home till 10 pm yesterday (long story) and back to work today. We are leaving in 15 minuts for nephews graduation and I'm typing with one hand in a splint..

You may know that arthritis sometimes causes osteopenia and osteoporosis, not just from steroid use (prednisone and the like), but from the arthritis in and of itself. Rob had osteopenia and they felt it was linked to the arthritis.

A fracture of the femur occurring spontaneously is worrisome. DId Hannah ever have a bone density test? If she did, please forgive me for raising the issue if it has been explored, but the fracture seems to me to be a true indicator that something else is going on here...that is not a normal occurence.lf she hasnt had a bone density/densomitry you might want to ask for one.

sorry for the lat ereply

Ok :

You asked about Hannah's fracture yesterday. You said you were curious about something, now you left me hanging LOL. What are you thinking? Hannah sees the ped tomorrow and I'm finding I educate him on these things as arthritis just is not in his field of expertise (nor should it be, that's why we have specialists) and he has no other pts who have it.

Beth

Sending prayers & happy thoughts,

[Guest guest]

Beth,your school/district has an OT that helps write the IEP? 's OT iwill offer input, but that assessment will be after the IEP, requiring a follow-up meeting. A school OT sounds like a good idea. BTW, please tell Hannah how proud we are of her for asserting herself at school the other day; I shared this with , as she has been frustrated with people nagging her to come back to water polo (friends and adults alike), yet she has slept most the weekend after her partial days Th & Fri (she was thrilled just to be at school!). She hasn't met anyone else with jra, so to hear of things like what Hannah did encourage her..How are her shoulder and elbow feeling? What did the doctor think?nancyBeth Yohnk <yohnkmom@...> wrote: Oh Helen: I feel so badly for you. Is the principal the one in your district that oversees the IEP? In our district each student is assigned someone that oversees each plan and I understand it varies from school to school. In Hannah's case it is a joint effort between the school social worker and the school occupational therapist. Both of them set the meeting dates and then notify the teacher, parents & principal. The OT is the one who wrote most of plan as far as accomodations go. In fact the

principal was not even present at the last meeting we had. She is aware of all of Hannah's accommodations, but does not oversee the plan itself. I would check with your district office and ask about doing this for Nick. It might help and certainly doesn't hurt to ask. The school nurse does not come to the meetings, but she & I speak often and she is aware of all of Hannah's health needs. We have great communication, but Hannah also goes to a very small school, which is nice. I will be far more worried next year when she starts middle school! Hang in there. Kids should not be treated like this ever, but I feel especially in elementary school. At this age they still need to be nurtured. Please keep us posted. You are in my prayers. Beth (Hannah, 10,

unspecified arthritis; asthma; gerd; migraines) Sending prayers & happy thoughts, Beth :-) Sorry hi guys,I am sorry I have not been a very good listmember lately. I feel bad I have not been there giving support and encouragement to those who needed it.Truth is, im feeling so down and fed up with

everything. School goes back on Tuesday and I'm dreading it. I want to keep Nick safe at home with me. I have such bad feelings for this upcoming year. I know its going to be a battle.I am convinced now that the principal is setting Nick up to fail, not only did she NOT put him in with the teacher I STRONGLY requested many times last spring, but ive discovered she stopped the school nurse attending the meeting i set up with Nicks teacher and Sp Ed teacher. I was told I would have to meet with her another time during school hours. I guess her hours are limited before school starts and she couldnt " waste" them on MY meeting. Of course I only know this as I've read between the lines and the nurse is upset because she told me she would have come in on her own time had she known about my meeting.Here, I call a meeting becuase of my childs HEALTH issues and the school nurse cannot attend. Can I say

FRUSTRATING! !!!What gets me is that the teachers are GREAT, the nurse is GREAT, but the principal is crap. She walks around with this fake smile on her face and a "Hi Helen, how was your summer" and all i want to do is wipe the smile off her face.Im just mad at myself because I don't have the guts to call her on all this. I dont have the guts to confront her and ask her what is her problem with me and my child.Anyhows enough whining. I'm sorry, im just laying low for while so if you dont hear from me don't worry.Nick's annual eye appt went well on Friday, it was a new doctor who actually asked about Nicks RF, ANA, HLBA27 factors. HE seemed to know his stuff, was great with Nick and even went and got his book to see when to see Nick again. He wanted every 6 months, but I told him systemics go every year. He was surprised last years doctor told me 3 years and he said 1 year at the longest between

appts. Im off to bed.hugs Helen and (10,systemic)

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

[Guest guest]

:

The OT person has been awesome. She and I communicate in between meetings via email. I usually will send her updates after Hannah's doctor's appt just to let her know if anything has changed (her 504 includes both her joint issues and he asthma). She also is the one who sets the goals for Hannah's 504 plan. She meets with Hannah for about 15 minutes every 6 weeks, but Hannah can request to see her sooner if she needs something (such as a new footstool, chair cushion, etc).

Her shoulder is fine, but that elbow keeps cracking. It sounds like it pops every time she moves it. I think we'll just watch it for now. Hope is able to make a few more days back at school soon.

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraiens)

Sending prayers & happy thoughts,

Beth :-)

Sorry

hi guys,I am sorry I have not been a very good listmember lately. I feel bad I have not been there giving support and encouragement to those who needed it.Truth is, im feeling so down and fed up with everything. School goes back on Tuesday and I'm dreading it. I want to keep Nick safe at home with me. I have such bad feelings for this upcoming year. I know its going to be a battle.I am convinced now that the principal is setting Nick up to fail, not only did she NOT put him in with the teacher I STRONGLY requested many times last spring, but ive discovered she stopped the school nurse attending the meeting i set up with Nicks teacher and Sp Ed teacher. I was told I would have to meet with her another time during school hours. I guess her hours are limited before school starts and she couldnt " waste" them on MY meeting. Of course I only know this as I've read between the lines

and the nurse is upset because she told me she would have come in on her own time had she known about my meeting.Here, I call a meeting becuase of my childs HEALTH issues and the school nurse cannot attend. Can I say FRUSTRATING! !!!What gets me is that the teachers are GREAT, the nurse is GREAT, but the principal is crap. She walks around with this fake smile on her face and a "Hi Helen, how was your summer" and all i want to do is wipe the smile off her face.Im just mad at myself because I don't have the guts to call her on all this. I dont have the guts to confront her and ask her what is her problem with me and my child.Anyhows enough whining. I'm sorry, im just laying low for while so if you dont hear from me don't worry.Nick's annual eye appt went well on Friday, it was a new doctor who actually asked about Nicks RF, ANA, HLBA27 factors. HE seemed to know his

stuff, was great with Nick and even went and got his book to see when to see Nick again. He wanted every 6 months, but I told him systemics go every year. He was surprised last years doctor told me 3 years and he said 1 year at the longest between appts. Im off to bed.hugs Helen and (10,systemic)

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

[Guest guest]

Thanks Beth...that reassures me....the parents may still fret as I have sinus congestion and my voice sounds like Lucille Ball or Bacall...lol....but, I will do my best to reassure, and keep a distance. I feel better this morning and my cough has calmed. Well, I guess I should finish packing - it should be a fantastic weekend.nancyBeth Yohnk <yohnkmom@...> wrote: : Most colds

are contagious for 2-4 days, but if your coughing you can be contagious for up to 3 weeks. If it is something viral, a lot of those are not contagious. If you have something requiring antibiotics, usually 24 hrs after starting them you are no longer contagious. Hope this helps and you are feeling better so you can both go camp. Sending prayers & happy thoughts, Beth :-) Re: Rituxan @group s.com> I wish to good success with the treatments> I don't anything about the drug. except for > my hemo doc asking if I'd ever tried it!> Tell your guys both a big Hello from a Rusty > Old One! > hplta> Rusty> > Pinpoint customers who are looking

for what you sell.

Building a website is a piece of cake. Small Business gives you all the tools to get online.

[Guest guest]

Boy , you feel yucky yourself and you're asking about us. You are far too good to us:) Hannah did not sing for her grandparent's party. Unfortunately it is it not uncommon for her to get a severe sore throat and lose her voice when she has a bad attack. She will, however, be singing her song in church on November 4 for her first communion service. She is very excited about that.

As far as her joints go, she is getting a lot of stiffness again. I will watch her closely for a while. The weather here has really been unstable, going from 85 one day to maybe 62 the next and I'm sure that is playing a huge role. I'll see what happens once fall gets here for good. As for me, my doc is sticking with OA for now. But my mom sees her too and she is certainly aware of mom's history. She took me off the prescription Ibuprofen yesterday. I'm now trying 800mg Naproxen twice per day along with 2-650mg Tylenols up to three times a day. She said my stomach should be ok on those doses. Since I work in the same department as her, she will keep tabs on me. Hard to be naughty when you work closely with your own pcp..LOL

Hope you are feeling better soon. Hannah does not sleep on pred either. Let me know how you are doing tomorrow.

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Beth

Beth:How is Hannah doing? Is her asthma doing better? Did she get to do her song for her grandparents later on in the week?I'm so hyped on prednisone right now that I'm just typing away. I can't sleep. I don't know how these little ones handle it.

I am also so sorry to hear that you are feeling so poorly. I know that they thought you had OA, but it sure sounds like RA...I'm so glad that your doc is pursuing this further. I wasn't too familiar with CCP, but am familiar with CRP. I'm curious to see your results. And yes, I think it would be a great idea to give Hannah the same test...

Keep us posted on what is going on with both of you, OK? and Rob 18 Spondy

[Guest guest]

Your girls sound like amazing young ladies. Everyone keeps telling me, wait till Hannah is teenager she will change. Well I doubt it. They don't understand what our kids with chronic health problems go through. Hannah is mature far beyond her years and I don't think that will change.

By the way, we love going next door (to the spoiled house as my kids call it) to hit their rummage sale. They have 3 teenage girls and I get brand new clothes (literally, with tags still on) for Hannah at rummage sale prices. Their spoilage is my gain...LOL

Let us know how the appt goes and what fun thing you do. I think its awesome you guys hang around. I already know kids Hannah's age who don't want to hang with their moms anymore. I'm fortunate both my kids still seem to like Mike & I.

Beth & Hannah, 10 (who told me today 10 days until she's 11), unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Jaye

Well we have been doing so well for quite a while. The only problems Jaye has had for the past several months, was some stiffness and occasional minor pains. Well today she called from the school needing some pain medicine. Her knee is swollen and very painful. She has was appears to me to be alot of fluid around her knee. She is pretty upset because she has a volleyball game today and is now afraid that she will not be able to play. We have an appointment with a new rheumy two weeks from today in Kansas City so I guess the timing is right or at least close to right but it sure makes me feel bummed today.Veri & Jaye 13 poly Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Beth,

Your gut instinct is probably right about Hannah. I raised my step daughters and they were both a handful as teenagers. They were bosy, rude, demanding and obnoxious and boy crazy. We had many struggles. My Jaye and Kristie Jo both have many friends that are boys but have no need for a boyfriend now. Actually, Kristie Jo has a friend that lives in San Diego during the school year and in Kansas for the summer. They have been best friends for the past two and a half years. Probably would be more the boyfriend type is he was here year round. I thank God that he is in California most of the time. He is a really neat boy and Christian which is most important. But they do not need the stress of that while in highschool for the most part. Jaye has a couple of friends that are not Christians but Kristie Jo's close group of friends are all Mennonite, she is the odd one out being a Baptist. I do not expect my girls to give me troubles, they are not perfect and yes they have gotten in trouble for one thing or another but compared to the other girls these two are awesome.

Veri

Re: Beth

Your girls sound like amazing young ladies. Everyone keeps telling me, wait till Hannah is teenager she will change. Well I doubt it. They don't understand what our kids with chronic health problems go through. Hannah is mature far beyond her years and I don't think that will change.

By the way, we love going next door (to the spoiled house as my kids call it) to hit their rummage sale. They have 3 teenage girls and I get brand new clothes (literally, with tags still on) for Hannah at rummage sale prices. Their spoilage is my gain...LOL

Let us know how the appt goes and what fun thing you do. I think its awesome you guys hang around. I already know kids Hannah's age who don't want to hang with their moms anymore. I'm fortunate both my kids still seem to like Mike & I.

Beth & Hannah, 10 (who told me today 10 days until she's 11), unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Jaye

Well we have been doing so well for quite a while. The only problems Jaye has had for the past several months, was some stiffness and occasional minor pains. Well today she called from the school needing some pain medicine. Her knee is swollen and very painful. She has was appears to me to be alot of fluid around her knee. She is pretty upset because she has a volleyball game today and is now afraid that she will not be able to play. We have an appointment with a new rheumy two weeks from today in Kansas City so I guess the timing is right or at least close to right but it sure makes me feel bummed today.

Veri & Jaye 13 poly Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

BethYou are such a wise woman. Not wanting to give the new doc Hannah's history before hand makes perfect sense. I'm so glad that perhaps he may be the answer and willing to take on the challenge of finding out what is going on with Hannah. I still think of her situation quite often myself, and I still think that there is definately something to the fact that she had an occult fracture. I would hope that eventually someone would order a bone scan as well as a dexa scan, the first to truly see if there is active inflammation, and of course the second to see if there is osteopenia or even osteoporosis, which can go hand in hand with the inflammatory diseases. Both those tests, in my book, should have been done before (forgive me if she had the dexa, I'm now second guessing myself at this time of the night thinking she might have had that done?)At any rate, it sounds like you have a plan. Just wish that Thanksgiving week weren't so far away! How is her ankle doing?? and Rob 18 Spondy OT: A Poem called "A Beautiful Lie" > > > So... umm.. I thought I would share a little poem that I > wrote... wouldn't mind feedback... always appreciated and > needed. Hope it doesn't depress anyone.... I'm a rather dark > writer I suppose.... but it helps me cope.... > > A Beautiful Lie- > > No one ever said that> life would be a rose garden> Yet I somehow believed it would be. > Yes, I expected some thorns of pain> But never did I know> that the beautiful rose bud> could be so damaged> and even torn off> Each petal ground into the earth> suffocating out it's life> The thorns could become machette knives> cutting flesh> dripping blood...> I never realized the pain would shatter my soul > and fragment my mind> I never knew that love would hurt so bad. > Where did this unreal dellusion of> alovely rose garden come from??> Why did I believe it existed?> Do all people start off believing in rose gardens? > that live happening prunes away...> or even shatters?> or even destroys?> will the roses come back?> with their lovely scents?> and beautiful delight to eyes?> How much can the thorns cut> before you give up and die? > We were never promised a rose garden in life > nor thistles and thorns...> nor are we promised regrowth> at least not in this present world> yet I somehow believed in this rose garden> and now i know the truth > No one was ever promised a rose garden> nor did anyone prepare us for the thorns...> > > -- > "I am not sick. I am broken. But I am happy as long as I can > paint." > > --Frida Kahlo > > > > > > -- > "I am not sick. I am broken. But I am happy as long as I can > paint." > > --Frida Kahlo >

[Guest guest]

Hi :

I'm sorry to hear you are not feeling well. Do you have a bug or is it your RA? Hannah's ankle is making very slow progress. She said this morning she thinks tonight she will try using the crutches to start putting pressure on it. She said it felt a little better. As far as her appointment, I agree I wish Thanksgiving was sooner, but like I said they are off that whole week from school and I can be more flexible with scheduling. They are off the end of October too, but we already have made plans for that weekend.

Hope you are feeling better soon. I'll let you know how the new med works, I've only taken one dose so far.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

OT: A Poem called "A Beautiful Lie" > > > So... umm.. I thought I would share a little poem that I > wrote... wouldn't mind feedback... always appreciated and > needed. Hope it doesn't depress anyone.... I'm a rather dark > writer I suppose.... but it helps me cope.... > > A Beautiful Lie- > > No one ever said that> life would be a rose garden> Yet I somehow believed it would be. > Yes, I expected some thorns of pain> But never did I know> that the beautiful rose bud> could be so damaged> and even torn off> Each petal

ground into the earth> suffocating out it's life> The thorns could become machette knives> cutting flesh> dripping blood...> I never realized the pain would shatter my soul > and fragment my mind> I never knew that love would hurt so bad. > Where did this unreal dellusion of> alovely rose garden come from??> Why did I believe it existed?> Do all people start off believing in rose gardens? > that live happening prunes away...> or even shatters?> or even destroys?> will the roses come back?> with their lovely scents?> and beautiful delight to eyes?> How much can the thorns cut> before you give up and die? > We were never promised a rose garden in life > nor thistles and thorns...> nor are we promised regrowth> at least not in this present world> yet ! I someho w believed in this rose

garden> and now i know the truth > No one was ever promised a rose garden> nor did anyone prepare us for the thorns...> > > -- > "I am not sick. I am broken. But I am happy as long as I can > paint." > > --Frida Kahlo > > > > > > -- > "I am not sick. I am broken. But I am happy as long as I can > paint." > > --Frida Kahlo >

[Guest guest]

Beth:

Its my RA. Its been slowly getting worse. Last night it was affecting my eyes, they dry out terribly when I'm flaring. I have some drops so I restarted those and it is helping. The change in weather is hard. I talked to Rob a few minutes ago and he said he is doing ok. Of course, he won't tell me anything until it gets really bad. He says he was in a ping pong tournament the other day at the dorm and enjoyed that. He loves ping pong and its a sport he can be competitive in.

I'm glad that Hannah's ankle is improving, even though its slight. Hope she is successful in putting more weight on it this evening.

and Rob 18 Spondy OT: A Poem called "A Beautiful Lie" > > > > > > So... umm.. I thought I would share a little poem that I > > wrote... wouldn't mind feedback... always appreciated and > > needed. Hope it doesn't depress anyone.... I'm a rather dark > > writer I suppose.... but it helps me cope.... > > > > A Beautiful Lie- > > > > No one ever said that> > life would be a rose garden> > Yet I somehow believed it would be. > > Yes, I expected some thorns of pain> > But never did I know> > that the beautiful rose bud> > could be so damaged> > and even torn off> > Each petal ground into the earth> > suffocating out it's life> > The thorns could become machette knives> > cutting flesh> > dripping blood...> > I never realized the pain would shatter my soul > > and fragment my mind> > I never knew that love would hurt so bad. > > Where did this unreal dellusion of> > alovely rose garden come from??> > Why did I believe it existed?> > Do all people start off believing in rose gardens? > > that live happening prunes away...> > or even shatters?> > or even destroys?> > will the roses come back?> > with their lovely scents?> > and beautiful delight to eyes?> > How much can the thorns cut> > before you give up and die? > > We were never promised a rose garden in life > > nor thistles and thorns...> > nor are we promised regrowth> > at least not in this present world> > yet ! I someho w believed in this rose garden> > and now i know the truth > > No one was ever promised a rose garden> > nor did anyone prepare us for the thorns...> > > > > > -- > > "I am not sick. I am broken. But I am happy as long as I can > > paint." > > > > --Frida Kahlo > > > > > > > > > > > > -- > > "I am not sick. I am broken. But I am happy as long as I can > > paint." > > > > --Frida Kahlo > > >

[Guest guest]

: I hope your doc can find a good med for you soon. I feel badly for you. I guess I'e seen my mom struggle for so many years, I kind of know what your feeling

I actually just saw Hannah's ped. I was downstairs at work talking with my SIL (she's worked for him for years) and he came over to ask about Hannah. I showed him the brace I bought for her for after she's out of the aircast to make sure I bought the right one. He said not to rush the walking with her. I know she's thinking of her field trip Monday and is feeling stressed about being on crutches. I won't let her push it though. She's having 16 (yes 16) friends over Saturday for a birthday/Halloween costume party at our house. So she will at least have some fun.

Take care of yourself and let me know how you are doing. Hugs!!

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

OT: A Poem called "A Beautiful Lie" > > > > > > So... umm.. I thought I would share a little poem that I

> > wrote... wouldn't mind feedback... always appreciated and > & g! t; neede d. Hope it doesn't depress anyone.... I'm a rather dark > > writer I suppose.... but it helps me cope.... > > > > A Beautiful Lie- > > > > No one ever said that> > life would be a rose garden> > Yet I somehow believed it would be. > > Yes, I expected some thorns of pain> > But never did I know> > that the beautiful rose bud> > could be so damaged> > and even torn off> > Each petal ground into the earth> > suffocating out it's life> > The thorns could become machette knives> > cutting flesh> > dripping blood...> > I never realized the pain would shatter my soul > > and fragment my mind> > I never knew that love would hurt so bad. > > Where did this

unreal dellusion of> > alovely rose garden come from??> > Why did I believe it existed?> > Do all people start off believing in rose gardens? > > that live happening prunes away...> > or even shatters?> > or even destroys?> > will the roses come back?> > with their lovely scents?> > and beautiful delight to eyes?> > How much can the thorns cut> > before you give up and die? > > We were never promised a rose garden in life > > nor thistles and thorns...> > nor are we promised regrowth> > at least not in this present world> > yet ! I someho w believed in this rose garden> > and now i know the truth > > No one was ever promised a rose garden> > nor did anyone prepare us for the thorns...> > > > > > -- > > "I am not sick. I am

broken. But I am happy as long as I can > > paint." > > > > --Frida Kahlo > > > > > > > > > > > > -- > > "I am! not sic k. I am broken. But I am happy as long as I can > > paint." > > > > --Frida Kahlo > > >

[Guest guest]

Hi Beth, I read your post about getting Hannah into see your mom's

rheumy. I know it's hard to go through all of the appointments but I

think that you are doing the right thing. Thank goodness you always

have the backing from your ped.

I read Issadora's post to you and what she had to say about growing

up with a disease that didn't quite fit the right box for diagnosis.

She said that she eventually just stuck with a diagnosis that made

the most sense to her. This is what I have done with Drea. Every

doctor has a differnt opinion. Yet it all comes back to the immune

system and joint pain. In my endless research, I concluded that for

the most part the treatment plan was quite similar with many

autoimmune disorders. Oddly, enough I found this reassuring and

became less concerned that something was missing as far as diagnosis.

The other thing that helped me was seeing others stories on this

board. There are some kids on this list whose symptoms so closely

mimic Aundrea's it amazes me.

Speaking of Drea, she is doing ok. Missing a few more school days

here and there. Some joint pain and suddenly getting more

headaches. She has 3 that were severe enough that she couldn't go to

school or had to come home. I am starting to record them on the

calendar to see if they might have a pattern. I have horrible

headaches every time I ovulate and before my period. I was wondering

if this might be what she is dealing with.

Please let us know how things go for Miss Hannah. I wish the road to

recovery was so much easier, but if nothing else you at least can

take comfort in knowing that you are not alone.

Hope you start feeling better soon with those new meds!

(aundrea 12 systemic jra/gerd)

> > Issadora:

> > I read this poem several times. Yes, you are a dark

> > writer, but if it helps you cope I say go for it! I

> > personally liked this poem, although I sometimes tend to read

> > darker type novels myself. Don't stop witting if it helps.

> >

> > How is your back doing? ! ; I star ted a new med for my OA

> > today, we'll see...

> >

> > Beth & Hannah, 11 TODAY, unspecified arthritis; asthma; gerd;

> > migraines

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

> >

> >

> > OT: A Poem called " A Beautiful Lie "

> >

> >

> > So... umm.. I thought I would share a little poem that I

> > wrote... wouldn't mind feedback... always appreciated and

> > needed. Hope it doesn't depress anyone.... I'm a rather dark

> > writer I suppose.... but it helps me cope....

> >

> > A Beautiful Lie-

> >

> > No one ever said that

> > life would be a rose garden

> > Yet I somehow believed it would be.

> > Yes, I expected some thorns of pain

> > But never did I know

> > that the beautiful rose bud

> > could be so damaged

> > and even torn off

> > Each petal ground into the earth

> > suffocating out it's life

> > The thorns could become machette knives

> > cutting flesh

> > dripping blood...

> > I never realized the pain would shatter my soul

> > and fragment my mind

> > I never knew that love would hurt so bad.

> > Where did this unreal dellusion of

> > alovely rose garden come from??

> > Why did I believe it existed?

> > Do all people start off believing in rose gardens?

> > that live happening prunes away...

> > or even shatters?

> > or even destroys?

> > will the roses come back?

> > with their lovely scents?

> > and beautiful delight to eyes?

> > How much can the thorns cut

> > before you give up and die?

> > We were never promised a rose garden in life

> > nor thistles and thorns...

> > nor are we promised regrowth

> > at least not in this present world

> > yet ! I someho w believed in this rose garden

> > and now i know the truth

> > No one was ever promised a rose garden

> > nor did anyone prepare us for the thorns...

> >

> >

> > --

> > " I am not sick. I am broken. But I am happy as long as I can

> > paint. "

> >

> > --Frida Kahlo

> >

> >

> >

> >

> >

> > --

> > " I am not sick. I am broken. But I am happy as long as I can

> > paint. "

> >

> > --Frida Kahlo

> >

>

[Guest guest]

Hi :

Thanks for the encouragement. We are feeling good about getting Hannah to see my mom's doctor. I guess I have to really get tough and not take "we don't know" as an answer. I'm hoping to call next week and set something up. Hannah's ankle is finally showing improvement. She was walking with the crutches Thursday night and all day yesterday. This morning she's doing a little walking without them, but I told her not to overdo it. I know she does not want to do crutches at her birthday part tonight! I'll get a note from the ped next week for gym, otherwise lunkhead gym teacher with throw her right back in at full force as soon as he sees she's off crutches.

I think you are right on the money about Drea's headaches. She is at that age of possible hormonal headaches. I've been putting Hannah's migraines on the calendar too to see if they track a certain time of the month. Glad to hear that her joint pain isn't too severe. Let's pray it stays that way!

Thanks for checking in, I think of you guys often. Hugs!!!

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

OT: A Poem called "A Beautiful Lie" > > > > > > So... umm.. I thought I would share a little poem that I > > wrote...

wouldn't mind feedback... always appreciated and > > needed. Hope it doesn't depress anyone.... I'm a rather dark > > writer I suppose.... but it helps me cope.... > > > > A Beautiful Lie- > > > > No one ever said that> > life would be a rose garden> > Yet I somehow believed it would be. > > Yes, I expected some thorns of pain> > But never did I know> > that the beautiful rose bud> > could be so damaged> > and even torn off> > Each petal ground into the earth> > suffocating out it's life> > The thorns could become machette knives> > cutting flesh> > dripping blood...> > I never realized the pain would shatter my soul > > and fragment my mind> > I never knew that love would hurt so bad. > > Where did this unreal dellusion of> >

alovely rose garden come from??> > Why did I believe it existed?> > Do all people start off believing in rose gardens? > > that live happening prunes away...> > or even shatters?> > or even destroys?> > will the roses come back?> > with their lovely scents?> > and beautiful delight to eyes?> > How much can the thorns cut> > before you give up and die? > > We were never promised a rose garden in life > > nor thistles and thorns...> > nor are we promised regrowth> > at least not in this present world> > yet ! I someho w believed in this rose garden> > and now i know the truth > > No one was ever promised a rose garden> > nor did anyone prepare us for the thorns...> > > > > > -- > > "I am not sick. I am broken. But I am happy as long as I

can > > paint." > > > > --Frida Kahlo > > > > > > > > > > > > -- > > "I am not sick. I am broken. But I am happy as long as I can > > paint." > > > > --Frida Kahlo > >>

[Guest guest]

Beth,you are so sweet! Quite honestly, you and Hannah were next on my "catch-up" list as I feel awful that I missed wishing Miss Hannah a Happy Birthday! How many friends was she having over for a party?!? I am hoping her ankle is continuing to improve and that she had a wonderful birthday. Please tell her congratulations on be elected class president and that I hope she had a wonderful birthday!! She is deserving of all!How are you feeling? Do the new meds seem to be helping at all, or is it too soon to tell? Well, I better get off of here - we must on the road to UCLA by 6:30 a.m.Please give Hannah a big, belated birthday hug for us! & Beth Yohnk <yohnkmom@...> wrote: : Please let us know how the appt goes. I'm glad your husband found a new job so quickly that is awesome. Just wanted to let you know I'm thinking of you and (and hubby too) and sending hugs for better days ahead for all of you! Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) 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 Beth,you are such a dear! It was a long morning (she always sees the immuno same day) and we did not get home til afternoon but it went pretty well, I guess. The rheumy agreed is having visible swelling in fingers and elbow but did not even look further to hips and knees..? (It slipped by me as I had my 18 mo granddaughter with us and dr was discussing soooo many things) She feels with severe cases of arthritis, it can take 3-4 months to see full benefits of mtx; has had some improvement in stamina/fatigue, but the swelling persists. With the dose increase last week, she wants to give it more time and see her in 4 wks. Both drs ordered tons of lab work and a chest x-ray as 's sternum has been painful and it could be arthritis related or something to do with the mtx. The immuno and rheumy think the rash she has had might be a viral thing (3 months now) but are testing for some other autoimmune issue

that presents in skin rashes..some IgE something (I have it written down) ...fortunately she finally sees the dermatologist next week also as her primary was stumped as well. The rheumy wants to consult with 's neuro to discuss if there might be an inflammatory link to the headaches, ('s recent increase in headaches correlates to the increase in joint swelling) and consider treating with short course steroids to see if it helps the headaches also. Phew! Sorry you asked? lol...As for me, the weather has been cold and damp, and that is hard for me...other than that, I am just waiting for my appt Nov. 7.I hope you get over your cold quickly and your meds begin giving you some relief. This past weekend must have been fun but exhausting! I am sure Hannah made a beautiful Renaissance Queen! Hopefully you will post some pictures when you get them. I am glad Hannah's heels is progressing, even if it is slower than

desired.Well, it is getting late afternoon and I better get something done towards dinner! Thanks again for asking after . Beth Yohnk <yohnkmom@...> wrote: Hi : I keep checking in today for an update, so I'll just keep waiting. In the meantime, don't worry about missing Hannah's b-day, you've certainly had enough on your plate lately! Her party was a lot of fun.

We had a total of 15 girls including Hannah. They all looked awesome in their costumes. Hannah was a Renaissance queen and looked beautiful. I hope it does not get too cold here so she wear it for trick or treating at my mom's house next weekend. Her ankle is getting a little better each day. I spoke to her ped on Monday and he wants her keep the aircast on for at least another week and then switch to a more flexible brace for a while. He her out of gym class indefinitely (that's seems to be where she gets hurt and then it gets ignored by the lunkhead teacher). He said his rule with bad ankle sprains is no activities until the child can run up the stairs without stopping or resting cause the foot hurts, three times in a row. I don't quite know yet if my new med is working. I caught a bug 2 days after starting it and now have a head cold so not really feeling that great

anyway. I'll let you know in a couple of weeks hopefully when I feel a little better. Thanks for asking. How are YOU feeling? Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) 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]

:

Never sorry I asked. It is discouraging to hear rheumy's that don't do full exams. I guess I'm so spoiled by an awesome ped that maybe my expectations are too high. That is my fear as well with getting Hannah back in. I don't want a doctor to simply look at her see a happy girl who is athletic and say nothing is wrong with her. Her pain doctor actually told us once that if she really had arthritis she could not be so muscular. She needs to be examined from her neck down to her toes. I still feel strongly she has some form of spondy and I really do need to get her in soon. Ok, I rambled and am now off subject, very sorry.

I'll be curious what the derm has to say. It could be viral, but 3 months seems like a long time for a virus. Has she ever had allergy testing? Maybe its an allergy to something that was triggered by her JRA? What other immune diseases are they testing her for? I'm not familiar with IgE, but I know it is part of the HISS panel. Hannah's IgE was normal, but that is how we found her IGG deficiency. I'll be very interested to hear what you find out as and Hannah seem to have lots in common in their health issues.

Take care of you and hope you get to feeling better soon.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

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]

: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. > > > > > > > > > > __________________________________________________>