Re: sorry I have not been here- updates some OT Faith

January 16, 2005

No, the doc said the eustachian tubes and salivary glands are a seperate issue

from the jaw and RA.

Yes, the school thing is IDEA stuff, due process, IEP non compliance and change

of placement stuff, we are in Illinois. We have had NAMI, CABF and advocates

and I have advocated....for myself and others... even civil liberties and ADA

has been involved along the way. It really is a nightmare.

- In , fmt2002@c... wrote:

> WOW it certainly sounds like you have your hands full... I am so sorry about

the rough time you are having. I can relate to you in several ways as my jaw is

involved with RA and is very painful. I did not realize it could cause problems

such as you described , bleeding, damage to eustachian tubes, was this

indirectly caused by RA?

>

> Just curiousity, are you representing your child in an IDEA hearing or other?

If it is IDEA I can certainly relate there as well. We went through several

hearings with our son and I have done alot of advocacy for other children over

the years, it can be quite stressful. Are you in California?

>

> Hope everything starts to look up for you soon,

> Faith

>

> -------------- Original message --------------

>

> I posted this today on another group I belong to-

> I broke down finally and went in - been sick since Dec 26, thought it was ear

> infection or maybe possibly a bad tooth? I kept hoping that in spite of my

> chemo, my body might fight it off, anyway, on it's own? (I live in partial

> denial that I have RA and am on chemo- so used to having a sturdy healthy

> constitution, ya know?) This morning at pinewood derby weigh in, my ear began

to

> bleed inside. It has been hurting a LOT, and my jaw has been swelling, so much

> my teeth would not close or meet up lately sometimes. Well, having my ear

bleed

> I though oh you dummy now you went and let your dumb eardrum rupture, you

fool.

> SO I went in to the ER, deciding it should not wait till Monday.

> UG. Doc said my eustachian tubes are damaged, and so are my salivary

> glands....no infection, just chronic fluid that damaged it all.....and my jaw

> has RA in it.....like my fingers. (and toes and shoulder and knees etc, yeesh)

> He said he really can do very little for any of it. He gave me a decongestatnt

> hoping it will help the pressure and pain some, but warned me it might not and

> this is long term problem. grrrr. and the RA in the jaw will be just like

> everywhere else, sometimes it will act up and sometimes it won't. sometimes I

> will be to my knees in pain and unable to eat and sometimes it will be fine.

Oh

> joy. The good news is I took one pill so far and already the pressure and pain

> are better, bearable, and so is my hearing.

> I really am disgusted with my dumb body turning on itself. LOL. And I am like

> anyone else, - hey fix me doc! NOW. I am tired of all the things in me, Ray

and

> the kids that medicine cannot yet fix, LOL, I am a product of the instant

> gratification generation, ya know? LOL.

> XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

> In addition, I was at Shriners childrens hospital with my youngest for 3 full

> days this week.came home to find a cousin and a friend - both early 40s had

> passed away.....UG. broke her shoulder, I am not yet sure how......

> I counted, I have been to 8 funerals this year for people in their teens and

> 20's and 6 for people in their 30s and 40s, and it is hitting me hard in my

> face. also 2 for teen agers.

> I am in middle of suing our school district for disability discrimination and

> harrassment for my oldest child.....the trial starts this week, and sadly I am

> having to represent myself (LONG story)

> Life is just being really hard right now. I did not mean to not be here and

not

> be supportive to you guys in your battles. Please do know I keep you all in my

> prayers daily, and I am inspired by your attitudes.

> My best to all of you.

>

January 16, 2005