[Guest guest]

Joyce,

I noticed by your email that you had tendons rupture in both shoulders. I

too have had both posterior tibial tendions of the feet rupture(due to RA) I

have had one foot fused 2 separate places and the other foot needs it also.

However I am experiencing pain from shoulder to wrist (deep pain on the

inside of my arm just above my elbow)and just wonder if this tendon has

snapped also. Would you mind telling me how you knew the tendon ruptured? I

sure hope it has not but would not be surprised....

thanks so much. I am 51 and have had RA for 18 yrs.

Joanne

[Guest guest]

I just wanted to say that and Dylan are adorable! Are they

sleeping any better for you in their helmets? I'm sure somewhere in

the Member's Kids File, you'll find a head shape (hopefully before

and after shots) that is similar to either or Dylan's. Again,

I wanted to say how cute your babies are, you've been twice blessed!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> > It sounds like your twins are voicing their opinion

> > about the helmet.

> > It is probably in their dispositions. I was lucky,

> > my daughter slept in

> > hers the first night and for the next three months

> > she didn't care

> > whether she had it on or not. My advice to you is

> > not to stress over

> > this too much! Take it slow and maybe as they get

> > more used to it they

> > will sleep in them. You can only do what you can

> > do! The helmet is

> > good for them but also is your happiness and theirs!

> > Don't worry - it

> > will work out!

> >

> > Paige

> > Mother to Madison - recent Graduate - August 2001

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

hey where can i find that body transplant?!?! i've been searching for

awhile!!!!! my son goes back to the knee dr tomorrow. i went to the foot dr

saturday. he said it looks better. still have the staples. i am doing

exercises to stregthen my ankle so i can drive. they want you to go to

therapy 3x's a week, i need someone to drive 45 minutes to take me?!?!so i

have 2 appts this week, plus my sons and my foot dr saturday. i can't wait to

drive again. work has requested my records. maybe because my parents had me

call and get info on long term disability. oh well, i can't worry about it.

whatever happens, happens. kathy in il

[Guest guest]

Dear ,

Thanks - it's always nice to hear someone found a message fascinating!

You have a lot ahead of you - it's easy to understand why you want to take

it one at a time. It's wonderful you have an understanding spouse. Mine tries,

but he gets very frustrated at seeing me trying to do things, and wants to help

" fix " me, and of course he can't. So then he does things like the dusting, the

laundry, loading the dishwasher - things I can do for the most part! You just

gotta love him.

My children are grown and all out of the house, but they still get scared if

I have to go into the hospital, or the " s " word (surgery) is mentioned. That's

party because my husband was dx with cancer last year - surgery was successful

but so-o-o long, and while the treatment after was also successful, it left him

incredibly tired and weak. Then their 25 yr. old cousin was extremely ill

waiting for a kidney transplant, and as you say, it goes on and on.

Have you ever felt you would like to have a body transplant? I do, but I

not only want a healthier body, but I also want a taller and thinner body!!

Anything new at the website? Or is that also yours and " on hold " - it's a

great site, those baby goats are so cute!

I hope tomorrow and each day after finds you closer to your goals, and the

happiness you deserve,

Jo

Re: [ ] Depression/

Jo,

Everything you have said is fascinating. I'm afraid that right now I am

only dealing with 1 thing at a time-now my knee surgery, then finding a new

rheumetologist and a psychiatrist, then my abdominal reconstruction etc....

I am scared and I do have a support system but only partly. My family is

great but it's hard for the kids to see my needs above their own. My

husband tries so hard and we both work very hard to keep normalcy. I have

wonderful friends but the one who understands best is someone with great

needs-bipolar and Multiple personality. My 19 year old son has left home

and not living as I wish. Oh it goes on and on but I hope that the

surgeries work and that I can find all the help I need. Thanks for

everything.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

http://www.homestead.com/kuddlekraft/index.html

[Guest guest]

Jo,

Yea the body transplant would be great. I've got the height just need less

weight-ha, ha. Thanks for the comments on my sites- just changed some pictures

-updated but that's it and took off some goats that have gone.

At the moment, my floor is covered in muddy paws but I can't do anything-the

dogs got caught in the sprinkler system.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

---------------------------------------

LOL , how did they like being under the sprinkler? Mine can't stand water

- they are not happy campers when it's bath time!

Jo

[Guest guest]

Jo,

Yea the body transplant would be great. I've got the height just need less

weight-ha, ha. Thanks for the comments on my sites- just changed some

pictures -updated but that's it and took off some goats that have gone.

At the moment, my floor is covered in muddy paws but I can't do anything-the

dogs got caught in the sprinkler system.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

http://www.homestead.com/kuddlekraft/index.html

[Guest guest]

Welcome to the group !

It sounds like you are doing all the right things. With 's condition

being mild the repositioning and the soft helmet may be all that you need to

correct the problem. With little to no facial assymetry or ear misalignment

you should have pretty good luck with the repositioning. It's probably a good

idea to check with the ped and a CT scan is always a good move if there is

ANY question whatsoever about cranio!

I'm glad you have chimed in here and I am wishing you very good luck with the

repositioning. It is good that you have an option for the helmet later if you

find it to be necessary. Please keep us posted.

Marci

[Guest guest]

HI

Thanks , you are right...my quesrion is there any connection between the

development of RA and sinus infections?

And so true...which came first, the chicken or the egg? I can only speak

for myself. Prior to RA I would get a sinus infection about 2 times a

year...spring and fall(Yet, never had signs of allergies--it just went

straight into a sinus infection.)I would be treated for 2 weeks and all was

well UNTIL January 1984(a strange month for me to get one!) but I came down

with the worst sinus infection..it lasted oveer a month and I was very

sick...and along with it came very sore joints of both my hands and feet.

And it was that time RA was diagnosed. What is intersting is since that

time the sinus infections have gotten worse, more often and lasting

longer.... If put on a DMARD within a week I have a sinus infection..so I do

not know which way to turn as I desperately need the DMARD.

Thanks again for all of the info....I read everything you send

Joanne

[Guest guest]

Thanks...the last site was really terrific....you are just a world book of

information...You go girl!!

Thank you so very very much for the help in understanding what has happened.

It sure does not sound good from what I have read so far.

Joanne

[Guest guest]

Hooray - good job !!!! What a cutie-pie!!

Marci

[Guest guest]

Way to go Em!

[Guest guest]

well i feel silly, my surgery is not this thursday it is next thurday the

25th. now i have to call work again. oh well never make plans without the

date!!!! kathy in il

[Guest guest]

i just feel bad that the dr stayed late to get my pre op done in time, my mom

in law cancelled something to take me to the hospital. i even went to check

and go to make sure i had enough to cover the post op drugs. all for

nothing!!!!

[Guest guest]

Kathy,

Don't feel silly I did the same thing with my surgery. My friend had to

keep correcting me. It is just nerves from the surgery don't worry about

it.

Lynn

----------

> From: kringlemom@...

>

> Subject: Re: [ ]

> Date: Tuesday, October 16, 2001 3:45 PM

>

> well i feel silly, my surgery is not this thursday it is next thurday the

> 25th. now i have to call work again. oh well never make plans without the

> date!!!! kathy in il

>

>

>

[Guest guest]

My grandaughter Rebekah is 5 and has ACC, Agenesis of the Corpos

Callosum. A history also of Infantile Spasm epilepsy, minor

microcephaly, and disorganization of brain cell formation over the

area of speech motor. Also an Arachnoid cyst where the corpos

callosum is supposed to be. She has just started walking unassisted

in the last couple months. She knows colors, shapes, letters of her

name and can find anything in a picture you ask for. But no speech.

She originally had speech/feeding therapy(we refused a feeding tube).

She has continued with Speech.My daughter had a difference of

opinion with the therapist at A.I.DuPont hospital and he discontinued

her therapy saying there was nothing he had to offer a 4 year old non

verbal child.(sounds of pulling my hair out). He's head honcho

there!!! We may have a chance of getting her back in there in the

near future. Her original speech/feeding therapist is back after

having 3 kids in 3 years. We will be going through the developmental

ped to get her in again. I hope! In the meantime she has had ST in

school. Bekah has said words but we hear them once and never

again.She babbles with lots of sounds but uses MMMMMM for

anting, replying, in general her multi purpose sound. We have had

80 dives of hyperbaric oxygen therapy for her with what we feel

were outstanding results. We will be scheduling more. She can blow

whistles and blows air out, even pushing on her belly to do it at

times.This year at school we will soon be starting an AAC and

starting hard on the sign. Sign has been off and on in the past. She

is good at choosing pics. So that is who Bekah is.

Thanks

Judi(Bekah's Mom-mom)

[Guest guest]

i've never heard about this, but it sounds like fun!!!! of coarse i am not

supposed to drink anyway. kathy in il

[Guest guest]

HI All, I have been rather quiet lately ...mainly because not much to say

......but my incision finally closed 2 weeks ago Wed...and then I went back to

my surgeon the following Mon...and my whole abd was red and warm......he

asked me was I running fevers ? I didnt think I was...but I went from dumping

about 2 tbsp of fluid before the hole closed to nothing...so he put me on

2000mgKflex....and then I went home and discovered I was running fevers

(100+)and started having chills and aches ..so I called his office again and

they sent me for a CT late Thurs and called me Fri early and told me to go

back to hospital and they would put a drain in ..as fluid was collecting

again..............

So I went back to surgeon Mon and I most likely need to get the small piece

of mesh still not covered (about 2-3sq in)replaced as it has been

contaminated from the last surgery..A month ago when I was draining thru open

wound we did a culture and CT...everything was fine ...but he did say then

that until it closed off totally would we know for sure there was

colonization on the mesh. Thru all of this (it has been 7 months now since

orig hernia repair) I have had no real infection......just a cyst and

drainage needing to get out......but this last culture showed hi WBC so I

guess I am trying to fight now......

So I went back to SpecProcedures at hospital yesterday and they cleaned the

site and changed the bag.......and told me the surgeon needs to fix me

soon...an2 0I tin probably in next week or so....I go back to him on MON.

And then my medicare Hmo is changing its whole benefits schedule for next yr.

I dont know how anyone is going to be able to handle it ....so I need to

switch to another plan in Dec.....They all are changing things but mine is

the worst......If I had a yr like this one in 2002 it would have cost me

about 5000.out of my own pocket bynow....so I am getting the 6 other plans

here in valley to send me info and shopping.......God, I hate it when I have

to read the fine print.......

So other than this stuff I am fine.......havent had much pain lately(amazing

how when you are on 2000mg of ABs a day ...kinda cuts right thru it...)and

got the yeasties back though......so sign me...with a tail again.......JUdy

in AZ

[Guest guest]

hey judy, so sorry to hear of your troubles still. unbelievable!!! i know the

yeasty thing too. i've had them for years but i was on kflex and doxycycline

for like 45 days. so i am still having problems too. kathy in il

[Guest guest]

HI ...well when all this started I had a huge ventral hernia......lower

right abd...took a 9x12in piece of mesh to fix.....and it drained more than

avg cos it was so big....then the day (10 days after surgery ) they took out

last of staples my incison popped open....{this is from below navel to top of

pubis bone(same incision used to have my kids which when I had my dtr 20 yrs

ago burst open on lower 3 -4inches when she was 6 days old from infection)and

so when I had my son16 yrs ago they cleaned up adhesions and old scar from

herand kept me in hospital 6days to let it " set " } and I went to ER where they

wet packed me till next morning and the surgeon stitched me closed in his

office.....and put me on ABs.

Then I had the drain pulled on 14 days past surgery......and I was still

dumping 60 cc of fluid a day (12 hrs).....within a few days I started having

fevers, aches , chills, etc..sent me for a CT . Showed fluid was building up

in there but had travelled up from original drain site to over the incision

to upper rt abd where I had had 2 little hernias patched ......the Spec

Proced ures dr at hospital put in new drain and got 600+cc of fluid out there

......then I had to go back and forth to get drain changed, sterile site

cleaned and dressed ....and eventually discovered this pocket had become a

cyst.......the SPdr tried to inject ABs and saline into it around Easter to

get it to shrink...it did alil bit.....then my surgeon went in to take it

out ......hence second surgery..........now before this I had like 3 drains

put in over 6 weeks from SP Procedures......

That surgery went really well, things got sewn up -no staples- and nice

suckee drain...5days after that surgery my drain clogged and I didnt realize

it till Sunday ..started on a FRiday....so my surgeon yanked the drain ,

upped the ABs , and went in right away....loaded me up on IV ABs and the

fluid had already reached the mesh but did not go through . I was on IV ABs

for a month and was scheduled to have drain pulled on a Fri and it clogged

THur PM....so I went on IV ABs for another 7 days.....

Now , after pulling that drain, I had stitches out too.was 3wks past surgery

...I healed beautifully......then I had like a blister like thing under the

fresh skin/ incision....the surgeon drained it with a needle in his office ,

and it drained all weekend...(4-6 4x4s every 4 hours......but this was good

because it meant the fluid was trying to find it's own way out..........this

has been sterile fluid from my body all this time.....so then it stops like

on a Sun night . I had to go backl to surgeon following Fri.....I grew this

big old blister like cigar shaped thing by then right on incision......again

fluid finding own waty out. That was the day he re opened it to let it drain

from inside out....

NOw as to why? My surgeon is one of a group of highly skilled

surgeons...through all of this I have learned I am " special " ...they have lots

of residents rotating with them...what has happened to me has never happened

to my dr before...seen it when he was in school once ......and the rest of

his associates know me now......and they had never had such a thing

either...but in talking to my dad (who is 76)..who has had 11 hernia

operations(heredity has a calling in here ) in past 50 yrs ...has also had

similiar problems healing a couple of times.........My dad also has RA,OA,and

lots of allergies ....I seem to have gotten alot of this from him...

My surgeon told me a month ago when he was

checking me and my wound was only inch long and inch deep that he thought the

reason I was not healing faster was cause some colonization took place on

mesh before 3rd operation...I had peritonitis before they got in

there.......and figured it would close when ready....He also said with way

things had been going with me that I would know for sure if it was

contaminated after it closed.......and see ? it didnt take long.....

You know since I have had my problems with this ......I have heard from

several people a long the way that they had similar problems...one guy took a

year to close up.......(he was one of guys delivering my gauze/montgomery

straps.)..He and I got to be good acquaintances ...he would talk to me and

tell me how much better I looked , etc...and commiserate with me. And I am

still in counselling one on one......oh, last week was a beaut for me.....I

just cried and cried ....so angry at myself , this bag, .....and I am just

tired....

I am sorry if I seem to have rambled on here but you know I hear from friends

all the time about how I should change drs. And why cant they just fix this?

Well, it really has been fixed only way can be...there is nothing to be cut

out (well, except for contaminated patch) and the surgery will be a smaller

space that drainage should be much less this time....and well, let's all

pray it does the trick.....

As for the yeast ........I ate so much yogurt before ...I like yogurt ..but I

cant hardly look at it. I think I will try to get some of those

probiotics.........thanks for telling me....I know the Diflucan is wonderful

but only when you are done with ABs.....and I have been drinking lots of

water to flush my system, and cranberry juices.......Enough........I'm

done......if I bored you all I am sorry ...sometimes I just get so

frustrated.......Judy in AZ

[Guest guest]

Hi Judy,

I am so sorry to hear about the need for more surgery. I remember you

telling me this opening had been there for months..very strange, especially

when there is no infection (supposedly)As I told you I worked for surgeons

for many, many years...and never had I heard of a wound draining that

long...Gosh, isn't here any one else you could see for another opinion and

maybe to do the much needed surgery and stop this for you? what is it about

a surgery contaminating the mesh? Still do not understand the answers they

are giving you...Please let me know if there is anything I can do...Hope

this resolves soon

Joanne

[Guest guest]

Judy,

After all this time it finally closes and now this. This is really awful. I

feel

so bad for you. What reason does your doctor give for this happening?

Does he have any explanations?

Are you taking probiotics for the yeast? It really will help you. Are you

eating

yogurt? If you don't like it, taking the probiotics such as acidophilus

will help put the good bacteria back. It really is important to control

that yeast. It can get into your joints and cause you more problems.

Hang in there Judy. I know how frustrated you are.

a

10/18/01 8:29:14 PM, JHend65291@... wrote:

>

>

>

> HI All, I have been rather quiet lately ...mainly because not much to say

> .....but my incision finally closed 2 weeks ago Wed...and then I went back

> to

> my surgeon the following Mon...and my whole abd was red and warm......he

> asked me was I running fevers ? I didnt think I was...but I went from

> dumping

> about 2 tbsp of fluid before the hole closed to nothing...so he put me on

> 2000mgKflex....and then I went home and discovered I was running fevers

> (100+)and started having chills and aches ..so I called his office again

> and

> they sent me for a CT late Thurs and called me Fri early and told me to go

>

> back to hospital and they would put a drain in ..as fluid was collecting

> again..............

>

> So I went back to surgeon Mon and I most likely need to get the small

> piece

> of mesh still not covered (about 2-3sq in)replaced as it has been

> contaminated from the last surgery..A month ago when I was draining thru

> open

> wound we did a culture and CT...everything was fine ...but he did say

> then

> that until it closed off totally would we know for sure there was

> colonization on the mesh. Thru all of this (it has been 7 months now since

>

> orig hernia repair) I have had no real infection......just a cyst and

> drainage needing to get out......but this last culture showed hi WBC so I

> guess I am trying to fight now......

>

> So I went back to SpecProcedures at hospital yesterday and they cleaned

> the

> site and changed the bag.......and told me the surgeon needs to fix me

> soon...an2 0I tin probably in next week or so....I go back to him on MON.

>

> And then my medicare Hmo is changing its whole benefits schedule for next

> yr.

> I dont know how anyone is going to be able to handle it ....so I need to

> switch to another plan in Dec.....They all are changing things but mine is

>

> the worst......If I had a yr like this one in 2002 it would have cost me

> about 5000.out of my own pocket bynow....so I am getting the 6 other plans

>

> here in valley to send me info and shopping.......God, I hate it when I

> have

> to read the fine print.......

>

> So other than this stuff I am fine.......havent had much pain

> lately(amazing

> how when you are on 2000mg of ABs a day ...kinda cuts right thru it...)and

>

> got the yeasties back though......so sign me...with a tail

> again.......JUdy

> in AZ

>

>

[Guest guest]

Judy,

After reading your story, I can surely Identify. I've had the drains, mesh

in and out, IV antibiotics, packing the wound etc. Only I didn't get any

nice children from my original incision only lots of pain and agony from a

drunk driver who got off free. Next, Nov 5, is the plastic surgery/

reconstruction. Last ditch effort-hey I look at least 6 months pregnant and

haven't gained an ounce! Backaches too. An each time I need to do the yucky-

Go-lightly stuff to clear my bowels because of adhesions needing removal!

Now I'm worried about my knee because I'll need to stay immobile for a few

days!

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

http://www.homestead.com/kuddlekraft/index.html

[Guest guest]

a, I just wanted to say thank you...I went to health store and got some

probiotics.....the clerk told me to get the kind that dissolve in the

intestine and to take 2 a day at times spaced out from ABs ..so I started

last night ...and I think they are helping.......and I continue to drink lots

of cranberry juice and water trying to keep myself flushed out.....THanks

again .........Judy in az

[Guest guest]

wow, we got pelted with hail about 1:15am!! we still have a little " crushed

ice " on the steps. my toes are going to be cold tomorrow!!! trying to figure

out what to wear for my surgery. the last foot i wore shorts!!! guess that

won't work. i am a little nervous that my family is not around. my parents

back in florida, my sister just left st louis and going to join her hubby in

boston this week, my niece is going to louisville. it's me, my mother in law

and my son who'd rather go to school. i told my son to check with his grandma

to see that she feels comfortable taking me by herself. than add snow to

this?!?!? oh well, the hospital is about 3 miles away. kathy in il

[Guest guest]

thanks and i knew that. but it is nice to hear!!! kathy in il brrrr