Prayers Please

[Guest guest]

I just wanted to let everyone know that (rusty limbs) is doing ok this morning. Last night he was suffering further chest/head pain and was taken on down for catherization. Aftr the discovery of a 100% blockage on the left side of his heart, angioplasty was performed and a stent put in. At last report he was in recovery and doing ok. if anyone would like to email me personally for further info or hospital info please drop me a line at faces1999@....

Donna

[Guest guest]

Carol,

We will be praying for all of them. One voice can go a long way.

Make sure she calls you while there. you go girl and yell holler and

shake arthritis at those people lolol.

Robbin

[Guest guest]

What an honor! She will be in our prayers. I hope she will enlighten our

government officials on what it is like for a child to have this disease.

We need more money!! (n, 15, systemic)

prayers please

> Hi all!

> was selected over the summer to represent this area of SC at

the National Convention in NY. Well, she is able to walk.....4 steps in a

row....she will be flying Independence Air and the will wheelchair her from

ticket counter to baggage claim...and be in NY from 28 Aug to 3 Sept. Pray

for safety of the kids...safe travel...and that she is in so little pain it

doesn't interfere with the opportunity she has been given. She is walking

better today....maybe the stress endorphins are kicking in? She is planning

on bending any and ALL congressmen and house members about the life of a

child with arthritis. Who knows....plant a seed....maybe it will grow?!?

> Have a sunny day

> Carol and AS and Fibromyalgia

>

>

>

> --- car54ol@...

>

>

[Guest guest]

Carol,

Our prayers and proud hearts are with !

Val

Rob's Mom (6,systemic)

[Guest guest]

YOU GO JENNIFER !!!!!!!!!!!!!!(Sandi, Ken and Hunter, systemic 6(

[Guest guest]

Carol,

I had no idea exactly what conference you had mentioned until I read

this one more carefully and put the dates together. She's going to

the Republican National Convention, wow!!!! Of course you must be

unbelievebly proud of her for what ever she did to get selected and

that she wanted to go and speak her piece for everyone who can't be

there. Thank the Lord she was good enough to travel and I will

continue to pray for her. Way to go!!

Stacia and Hunter 8 systemic iritis

[Guest guest]

Hope is doing well and having a good time this week. Way to go

!! Michele ( 17, pauci & spondy)

prayers please

Hi all!

was selected over the summer to represent this area of SC

at the National Convention in NY. Well, she is able to walk.....4 steps

in a row....she will be flying Independence Air and the will wheelchair

her from ticket counter to baggage claim...and be in NY from 28 Aug to 3

Sept. Pray for safety of the kids...safe travel...and that she is in so

little pain it doesn't interfere with the opportunity she has been

given. She is walking better today....maybe the stress endorphins are

kicking in? She is planning on bending any and ALL congressmen and house

members about the life of a child with arthritis. Who knows....plant a

seed....maybe it will grow?!? Have a sunny day Carol and AS and

Fibromyalgia

--- car54ol@...

[Guest guest]

I had a colonoscopy without sedation a few months ago, its an interesting experience to say the least but also kind of cool. Well kind of cool in the way that you get to see what your colon looks like. Its also a really good test because they can take biopsys (you can feel pressure but it doesn't hurt), and the biopsys can give you the best look at whats going on with you. The worse part of the colonoscopy is the preparation for it, but even that isn't to bad. The barium enema I've never had, but I've heard that colonsocopys are more conclusive so if I was you I would go wtih the colonoscopy. What test are they doing for the ovarian problems, I've actually had a few.. so maybe I could help ya out there too..? Take care of yourself, your in my prayers.

Lots of love

(JAS, 20)

[Guest guest]

...a colonoscopy with NO sedation? I did not know they would even do that? Was it painful, discomfort???? As for female stuff, I will have a PAP and follow up with intravaginal ultrasound. Who knows what else. I will know more next week and keep all posted.

Thanks for the prayers!!

Donna

[Guest guest]

Dear Donna,  I can't help you with info on any of the tests, but I can sure pray.  Donna, you have helped so many other people in the past , it is time for people to come to your aid.  Many, many prayers for health and strength.  (n, 16, systemic)On Aug 20, 2005, at 8:50 AM, ajaoky@... wrote: It is not often I come on and ask for prayers for myself but time has come. I have been having some problems of late and was taken to ER yesterday. Yesterday the symptoms were severe dizziness. No matter what I was doing I felt like I was on the tilt a whirl. Eventually I was vomiting and extremely weak. The consensus although inconclusive at the ER was severe vertigo. But because I was running anemic and have had a combination of diarrhea and constipation,  rectal bleeding, cramping and low back pain among other things I will be going through a gamut of testing in the next few weeks. I am debating between the barium enema and colonoscopy as i type so any info on either is appreciated. As I do not sedate well I am leaning to the barium ick but its not as conclusive from what I understand. I also am having some female problems with bleeding and will be testing for ovarian problems. I have never prayed so much as I have lately and normally I do not bring my problems so out to others but time has come I am afraid and you can never have too many prayers! thanks gang! hangin tight and hangin tough! Donna

[Guest guest]

-Oh Donna..

You have soo much going on and i for one will be praying hard and

constantly for you. Some answers and some quick easy fix solutions.

I suffer from vertigo from time to time and its not fun at all.

Nothning worse than just moving your eyes and feeling as though you

are going to fall flat on your face. I have felt sick, but never

been to the point of vomiting. I feel for you.

I had a colonoscopy a few years ago... ill be honest, it was not a

fun procedure for me. I do not sedate at all well and even though it

was not painful, it was very uncomfortable. The worse part was when

they went " around the corners " so to speak. But it is a

comprehensive test and of course if i needed another one i would do

it in a heartbeat.

Please know that i am thinking of you and please let us know how you

are doing...please post, otherwise you will find me nagging

you...))

hugs Helen and (8,systemic)

-- In , ajaoky@a... wrote:

> It is not often I come on and ask for prayers for myself but time

has come. I

> have been having some problems of late and was taken to ER

yesterday.

> Yesterday the symptoms were severe dizziness. No matter what I was

doing I felt like

> I was on the tilt a whirl. Eventually I was vomiting and extremely

weak. The

> consensus although inconclusive at the ER was severe vertigo. But

because I was

> running anemic and have had a combination of diarrhea and

constipation,

> rectal bleeding, cramping and low back pain among other things I

will be going

> through a gamut of testing in the next few weeks. I am debating

between the

> barium enema and colonoscopy as i type so any info on either is

appreciated. As I

> do not sedate well I am leaning to the barium ick but its not as

conclusive

> from what I understand. I also am having some female problems with

bleeding and

> will be testing for ovarian problems. I have never prayed so much

as I have

> lately and normally I do not bring my problems so out to others

but time has come

> I am afraid and you can never have too many prayers!

> thanks gang!

> hangin tight and hangin tough!

> Donna

[Guest guest]

Lol yeah I wasn't pleased with his decision to do no anestesia but due to the heart condition he said he didn't want to risk it and it wasn't to bad. He made jokes with me the whole time, which was pretty awesome considering how embarrassing that test is. As for the other two you mentioned I had those done like a year ago, once again totally embarrassing tests but all in all not so bad.

[Guest guest]

Donna,

You know we all love you so anytime you need to vent or ask for help you just holler.

Many prayers to you for a quick solution to what is going wrong and an easy solution.

Hopefuly we will all be sitting around the dinner table a week from today and you will be able to get your mind off of stuff for a couple hours.

DO NOT mention lower GI to Allan.He must be a big chicken baby compared to all the others that have responded.

He is a Vietnam vet and goes to our VA hospital.He did not have a comfortable experiance to the colonoscapy and swears it will never be done again without being knocked out.

My mom had a upper and lower GI done at the same time.I guess they did some sort of concious sedation because within the hour I was driving a very loopy mama home.

Love and hugs Becki and 7 systemic

[Guest guest]

Donna,

You have my prayers.. I hope that you can figure out what is going on quickly and get some relief.

Hugs,

Emilie ( 5 Poly)

Prayers please

It is not often I come on and ask for prayers for myself but time has come. I have been having some problems of late and was taken to ER yesterday. Yesterday the symptoms were severe dizziness. No matter what I was doing I felt like I was on the tilt a whirl. Eventually I was vomiting and extremely weak. The consensus although inconclusive at the ER was severe vertigo. But because I was running anemic and have had a combination of diarrhea and constipation, rectal bleeding, cramping and low back pain among other things I will be going through a gamut of testing in the next few weeks. I am debating between the barium enema and colonoscopy as i type so any info on either is appreciated. As I do not sedate well I am leaning to the barium ick but its not as conclusive from what I understand. I also am having some female problems with bleeding and will be testing for ovarian problems. I have never prayed so much as I have lately and normally I do not bring my problems so out to others but time has come I am afraid and you can never have too many prayers!

thanks gang!

hangin tight and hangin tough!

Donna

[Guest guest]

ooog-what a tough time for you--i feel for you-i had something a bit

similar to you ,years ago & my husband had the vertigo thing.

i had a " flexoid sygmoidoscopy " with no anesthesia-

creepy,embarrassing,but not really painful,just aked to doctor if i

should open my mouth & make shadow puppets on the wall....i think

they do no anesthesia when it's only the LOWER g.i. tract.

my husband was so severly dizzy that he was puking & crawling on all

fours.he was diagnosed with " labrynthitis " a severe inner ear

infection-it totally takes away your sense of balance(hence the

crawling & puking-like sea-sickness).it went away,but he really

feels the bad cold days here in mass.-but loves winter!i'd say if

the colonoscopy was going to tellyou better-go with that,after

watching our nate do the barium yesterday & the elimination of it

afterwards-let's just say- NOT NICE!you've got enough to feel cruddy

dealing with,go with the more relaxed method-esp.if you're asleep...

i'll be thinking good thoughts for you

ilse mom of nate(11 systemic)

> It is not often I come on and ask for prayers for myself but time

has come. I

> have been having some problems of late and was taken to ER

yesterday.

> Yesterday the symptoms were severe dizziness. No matter what I was

doing I felt like

> I was on the tilt a whirl. Eventually I was vomiting and extremely

weak. The

> consensus although inconclusive at the ER was severe vertigo. But

because I was

> running anemic and have had a combination of diarrhea and

constipation,

> rectal bleeding, cramping and low back pain among other things I

will be going

> through a gamut of testing in the next few weeks. I am debating

between the

> barium enema and colonoscopy as i type so any info on either is

appreciated. As I

> do not sedate well I am leaning to the barium ick but its not as

conclusive

> from what I understand. I also am having some female problems with

bleeding and

> will be testing for ovarian problems. I have never prayed so much

as I have

> lately and normally I do not bring my problems so out to others

but time has come

> I am afraid and you can never have too many prayers!

> thanks gang!

> hangin tight and hangin tough!

> Donna

[Guest guest]

Oh Donna, I'm so sorry to hear that you are going through more trials. I'm with the group, the c-scope, although a bit more trouble, will give you a much better idea of what is going on. Have you seen the GI specialist yet??I'll be keeping you in my prayers.

and Rob 16 Spondy

On Sat, 20 Aug 2005 11:50:03 EDT ajaoky@... writes:

It is not often I come on and ask for prayers for myself but time has come. I have been having some problems of late and was taken to ER yesterday. Yesterday the symptoms were severe dizziness. No matter what I was doing I felt like I was on the tilt a whirl. Eventually I was vomiting and extremely weak. The consensus although inconclusive at the ER was severe vertigo. But because I was running anemic and have had a combination of diarrhea and constipation, rectal bleeding, cramping and low back pain among other things I will be going through a gamut of testing in the next few weeks. I am debating between the barium enema and colonoscopy as i type so any info on either is appreciated. As I do not sedate well I am leaning to the barium ick but its not as conclusive from what I understand. I also am having some female problems with bleeding and will be testing for ovarian problems. I have never prayed so much as I have lately and normally I do not bring my problems so out to others but time has come I am afraid and you can never have too many prayers!

thanks gang!

hangin tight and hangin tough!

Donna

[Guest guest]

Donna,

Go for the colonoscopy. Even if you do the barium they will most likely make you do it. It is the more conclusive test. The sedation is conscious sedation not general. It is the best measure. I was out with my girlfriends yesterday to see a movie and one of them has long history of colon issues in her family. She was adamant that I tell you to do the scope. No, not fun. But yes gives the better results. You are most certainly in our continued thoughts and prayers. Please let us know how you are doing.

e, mom to joe 18 poly

__________________________________________________

[Guest guest]

You have our prayers and our sympathy.

Sending every positive thought your way for whatever you decide.

Jo

> It is not often I come on and ask for prayers for myself but time

has come. I

> have been having some problems of late and was taken to ER

yesterday.

> Yesterday the symptoms were severe dizziness. No matter what I was

doing I felt like

> I was on the tilt a whirl. Eventually I was vomiting and extremely

weak. The

> consensus although inconclusive at the ER was severe vertigo. But

because I was

> running anemic and have had a combination of diarrhea and

constipation,

> rectal bleeding, cramping and low back pain among other things I

will be going

> through a gamut of testing in the next few weeks. I am debating

between the

> barium enema and colonoscopy as i type so any info on either is

appreciated. As I

> do not sedate well I am leaning to the barium ick but its not as

conclusive

> from what I understand. I also am having some female problems with

bleeding and

> will be testing for ovarian problems. I have never prayed so much

as I have

> lately and normally I do not bring my problems so out to others

but time has come

> I am afraid and you can never have too many prayers!

> thanks gang!

> hangin tight and hangin tough!

> Donna

[Guest guest]

Thanks to all those who are praying. I thought you all may find some weird humor in this. As many of you know, those of us with autoimmune diseases are prone to getting sick easier and when we do, it is sometimes more severe than our healthy friends and family. Also with our issues it always seems a visit to the ER turns out to be so much more. It is as if we totally catch them of guard and simply Freak them out....well after my bout of being sick and going to the ER my 10 yr old says: "yeah, mom when I was sick the day before I was real dizzy at school and then I got sick". Well he failed to tell me the dizzy part but he had been vomiting but did I link the 2 ...nope, not until yesterday when my hubby was spinning and sick and this morning when Matts school to say come get him, he is vomiting and very dizzy. When I picked Matt up several parents were there picking up sick kids SO...it seems my wicked vertigo may be a simple virus (lets hope anyway).

This brings to mind a question...am I the only one that dreads a trip to the ER BECAUSE the poor docs are so fumbled by our dx's???? and we never know what they will say, recommend, etc???

As for the other stuff I am lining up appointments today and will keep you posted!

Hugs to all!

Donna

[Guest guest]

Donna, I am also keeping you in my prayers. That would be wonderful if it turned out that a virus is the culprit. My grandmom had the symptoms you described with the dizziness, etc. and she was diagnosed with Meniere's disease. Her vertigo was so bad and made her so sick that she was hospitalized at the time. Good luck to you. Kim

In a message dated 8/22/2005 8:58:10 AM Central Standard Time, ajaoky@... writes:

....it seems my wicked vertigo may be a simple virus (lets hope anyway).

This brings to mind a question...am I the only one that dreads a trip to the ER BECAUSE the poor docs are so fumbled by our dx's???? and we never know what they will say, recommend, etc???

As for the other stuff I am lining up appointments today and will keep you posted!

Hugs to all!

Donna

[Guest guest]

Yeah the ER has always been pretty amusing to me. My favorite part is when they ask for the spelling of your medication, um I'm pretty sure your the doctor. At Stanford all doctors carry around a palm pilot that has a medical dictonary in it and I swear they always sit there looking up all my medications. Its definitely a hassle having a pre-existing condition and then having to deal with anything secondary that would bring you to the ER. And of course my favorite line of all "but you look so healthy"..apparently looks can be decieving. But the one good part of about the pre-existing condtion at least in my experience.. you get into a room fast.. There is a silver lining in everything! I'm hoping its just a virus and that you and your whole family start feeling better.

lots of love

(JAS, 20)

[Guest guest]

Thanks ! OR what about when they saythings like, " Oh wow, I didnt know kids got arthritis"...that one really sets me up for a cardiac arrest.....

smiles!!!

Donna

[Guest guest]

Yeah its like really you didn't know that and you went to medical school? At that point I'm pretty sure that I'm requesting a new doctor. Or like when they say your too young to have all these problems, well thanks thats helpful.. glad to know everyone else recognizes that fact too.. but uh yeah doesn't change the situation. Sometimes I just want to tell them to shut up.. like hey your not making the situation any better by telling me that I have a lot going on, cause trust me I get that I have a lot going on. And now because I'm doing better its like.. yeah I am on a ton of medication and sure I am healthier then I was..but thats why I have to stay on the meds because if I don't then I'm sick again. People don't get it, like sure when they feel better then can stop taking meds and get back to normal life. I on the other hand have to take a butload of pills and a weekly shot, and yeah most of the time I feel great..and sure it goes through my head constantly well I feel better maybe I don't need this stuff, but I also know that if I went off these meds I'd be sick again.. its weird when like nurses and stuff ask so you'll have to be on this stuff the rest of your life, uh yeah.. that's an autoimmune disease hello! There definitely needs to be a lot more awareness brought to ER's. Cause honeslty its really annoying when you finish your medical history section and they tell you wow you have to much going on a young age... i deal with that fact everyday I dont need them to point it out.. I mean even when they say it in a aw thats so sad I feel bad for you way.. its kind of like I dont need your pitty.. I just need you to help me out with whatever it is I came here for.. because honestly your opinion on how much my life sucks doesn't matter.. ER's are weird..

[Guest guest]

amen !!!!

Donna

[Guest guest]

has really educated the local ER. lol Since his diagnosis,

apparently the local pediatricians have read up on JRA. His dr

consulted most of his partners as well as seeking outside help before

was diagnosed. Now, it doesn't matter who is on call, they

are familiar with his needs.

A few months ago, he was in for a sprained ankle and vomiting

(sprained ankle on way to bathroom to vomit) and the dr was ordering

bloodwork. As had an appointment with his rheumy the

following week, I asked if they could go ahead and do his full work-

up and send it on, so he wouldn't need blood drawn 2 weeks in a row.

The dr said sure, checked the standing order, and it was what he was

already ordering.

Misty & (6, systemic)

> Thanks ! OR what about when they saythings like, " Oh wow, I

didnt know

> kids got arthritis " ...that one really sets me up for a cardiac

arrest.....

> smiles!!!

> Donna