Re: Update

[Guest guest]

,

YOU GO GIRL!!!! Size 18!!! I can only imagine!

{{HUGS}}

Redhead in FL

Approved 3/21 by BC/BS of NJ

Clinic 4/29/00, 9:00 AM

BMI 51

" He who began a good work in you will be faithful to complete it until the

day of Christ Jesus. " - Phil. 1:6

[Guest guest]

, I am just so very proud of you!! I can't wait until the day and am

able to say that I have reached the 200 mark. I have been at a stand still

for the past 2 weeks, but I can fill a huge difference in my clothes. You

are so very right life does go on and I am here to help anyone that is in

need. I too get a lot of emails and I try so very hard to answer all of

them. I have not missed one yet that I know of. I have missed talking to

you, you really helped me out when I needed it. Thank you for that.

take care and I hope to chat soon again,

[Guest guest]

,

So glad your granddaughter's procedure went well. I was saying prayers for

her and will continue praying for good results.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Well, my granddaughter, Makeila had her MRI today and she did real well.

Thanks for the prayers. We won't know the results for another week. They

told us we'd have them immediately, but today they said they couldn't get

around to reading them. Oh well.. I guess waiting gives us patience.

Thanks again for all your support.

Love

[Guest guest]

, I hope your grandaughter is doing better ... boo-boo and all. My

oldest son, , had seizures and we didn't really notice them until he

was about 8 years old. He was having peti-mal (sp?) seizures and eventually

grew out of them when he was about 14. I can't remember the name of the drug

he was on, it was so long ago. He hasn't had any problems since. Good luck

and we'll say an extra prayer that all goes well with the results. Sorry I

didn't respond earlier, I always seem to get behind. Kathleen (NY)

[Guest guest]

Sandy,

Sorry to hear you are having such difficulties! You are in my thoughts and

prayers! Damn this RP! Someday we will all laugh about this crap but right

now it doesn't seem very funny. The only good thing I can think about this

RP is this group! If we all didn't have it then we wouldn't have each

other!

Sending you good thoughts!!!

Lots of Love

Glenda

On Mon, 25 Sep 2000 01:08:35 -0000, Rpolychondritisegroups wrote:

> Hi All,

>

> I saw my Rheumy last Friday and he is not happy with the fact that

> I'm constantly flaring so he is taking me off Arava and starting

> me on Enbrel on Friday. I will continue on the Metho also.

> Have to see him on Friday so I can learn how to give myself the shots.

> My HMO approved it right away so I don't have to worry about the

> cost.

> I feel like I lost a little part of myself today. I have not worked

> since March of 99 because of the RP. I finally wrote a letter of

> withdrawal to my union today. I worked for this Theatrical Union for

> 22 years. I hate this damn disease!

>

> Sandy

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Jana,

Thanks so much. I will let you know how I do on the Enbrel.

I try not to lose hope but sometimes it is very difficult.

This RP. is just so frustrating.

Love Ya,

Sandy

Re: Update

>

> Sandy

> I'm sorry you are not feeling well. I know your frustrations, I too have

not

> worked since March. It just seems to finally reach its point where you

are

> about to give up. But don't lose hope. I sure hope the Enbrel works for

> you, you will have to keep us posted. If you ever need anthing, just

hollar,

> I'm sure one of us will hear you. You are in my prayers. Hugs and

Prayers

> Jana

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

---------- Original Message ----------------------------------

From: Soapy54@...

Reply-To: duodenalswitchegroups

Date: Fri, 29 Dec 2000 17:01:19 EST

Hi..

Wow..you are doing wonderful..keep up the good spirits!!

Tana

Ohio

>Hi all - hope those I know on this list are doing well, have had their

>surgery or finally gotten their insurance approvals.

>

>Today I had my first check up in 6 weeks and lost another 30 lbs for a total

>since my DS on 10/12 of a whopping 91 lbs - freaking gone forever!!!

>

>Dr. Macura, he's so cute - had to get that in. He's very pleased with my

>weight loss and progress and will see me again towards the end of January.

>Got a prescription for my first blood work up and depending on the blizzard

>we are expecting on Saturday, I'll go to a local lab next week to have the

>blood work done.

>

>I got the GREEN LIGHT to go back to work for the first time since June 30th

>on January 8th and I'm excited but nervous. Been home so long but I'm

>feeling great and looking forward to the social aspects of working again. I

>know I'll be able to walk from the elevator to my desk without needing oxygen

>like I used to.

>

>Only problem I'm having now is this damn anal fissure. I had my first green

>salad last night and it didn't go well at all. Within 2 hours I had horrid

>diarrhea and it caused the fissure to start bleeding again for the first time

>in a few weeks. Dr. Macura said that if it doesn't get better by the next

>time I see him I'll have to go to a rectal surgeon and have it taken care of.

> I'm not looking forward to that. Dr. M also told me that 200 pounds from

>now I should be ready for my panni and tummy tuck and that I should have a

>good plastic surgeon lined up and lots of cash. I'm hoping I won't have to

>worry about the cash part and I can get United Health Care to cover it as I

>already am having terrible rashes from my now hanging loose skin. I'll worry

>about it in about a year I guess. Just the thought of having a semi flat

>belly astounds me - have NEVER had that before!!!

>

>BEST WISHES EVERYONE FOR A HEALTHY, SAFE AND HAPPY NEW YEAR!!!

>

>Debbie R.

>Brooklyn, New York

>Dr. Jerzy Macura

>Staten Island University Hospital

>10/12/00 - 552# BMI 84 (surgery date)

>10/17/00 - 533# -19 lbs. (in hospital)

>10/24/00 - 511# -41 lbs.

>11/14/00 - 491# - 61 lbs. BMI 75

>12/28/00 - 461# - 91 lbs. BMI 70

>01/25/01 - next weighin

>

>

>

>

[Guest guest]

OH MY GOD!!!!!!!!!!!!!

YOU HAD THE SURGERY

HI IT'S FRAN!

How are you feeling? Oh my, I'm sooooo happy to hear from you.

Please write back I'd like to talk with you. I'm going to see Dr. Mecura

tomorrow at his Avenue U clinic. I'll look for your email

LOVE, Fran

[Guest guest]

Lesley

ANT, Trainee BFC, Mother of Three

Worthing

" The birds of unhappiness may fly overhead but dont

let them nest in your hair " - Chinese Proverb

[Guest guest]

Hi Crystal. I am very new....and my name is Gloria. I am presently

undiagnosed and may ask questions from time to time that you have all

answered a million times already. This new house sounds good....just

take it slowly. Gloria

> Hello everyone!

> I am a very old member and I want to welcome the new

> members and give everyone an update on what has been

> going on in my life, i sent a message a few days ago

> but i guess it got lost in cyberspace LOL! I have

> been on the sandostantin for five months know i can't

> tell a difference either way so i am going to continue

> with it. I have an appointment monday in iowa city

> and then tuesday i am having my second ng tube placed

> here and go on feedings for a while to let things

> rest.

> Let me tell you a little about myself. I am a married

> 22 year old female I have two girls vanessa is 5

> jillian is 2. I was diagnosed with panc. in 1997 I

> found out in 1998 the cause was cystic fibrosis

> mutation gene. I live in quincy, illinois. I go see

> a specialist in Iowa City, Iowa.

> I am currently on disablity i guess since about 2

> years ago it was a fight but well worth it.I don't get

> any help with my medication but am applying for

> several programs it seems like it takes forever. my

> husband and i live in his parents home and they help

> me out alot with the kids. We just bought a house

> from them for a dollar and are remodeling it we should

> be able to move in within a month. I am very nervous i

> am not sure that i can take care of the kids by myself

> and my husband works from 4-12 every day but i am sure

> i will get help.

> I have had problems with depression and been on

> different anti-depressnats. I have ups and downs

> seems like more downs then ups but things will get

> better.

> Henry- I am praying for you I have been where you are

> and you will make it i promise! I know it doesn't seem

> like it but you will if you need anything at all just

> e-mail me.

> I have missed you all and am sorry for not writing

> sooner but i have been so down and yucky for the past

> few months and i am starting to come out of it.

> I am very behind on the posts. and am catching up so

> if i post something that someone asked a long time ago

> that is because i am behind.

> I pray for you all every day and hope you all are

> doing well.

> Love,

> Crystal

>

>

> __________________________________________________

>

[Guest guest]

I am not so sure why -- but the thing that has caught my interest these days,

is being able to run 4 miles. It seems like a totally impossible thing to

me...It is really quite hard. I am using this training program from this

great book on exercise that I have (a huge fat textbook sort of thing).

se,

WOW! CAN I EVER RELATE TO THIS! I started jogging, purely by accident in

April 2000. I was on the treadmill walking away and I upped the speed 1/10th

of a mile per hour too much and I just broke into a jog...WITHOUT THINKING!

And that was the start of it.

My first goal was to run (well, when I say " run " you can read that as " jog " )

1 mile. I started to run 2-3 times a week: sometimes doing intervals like you

are doing but on a treadmill; sometimes doing laps. I start jogging 1/4 mile

the first time I did laps adding 1-2 laps a week. (On the track I was using,

1 lap = 1/12th mile.) When I was on vacation (1-week long) in August 2000, I

drove off a route that was 1 mile long. I ran everyday then and on the 2nd or

3rd day, I ran that mile. I was ecstatic, to say the least!!!

Then, I decided I was going to train for the local Women's 4-miler in Sep

2001 (this IS NOT a TYPO). In Oct 2000, I started running outside with a

friend or 2. Gradually building up. In April 2001, I decided that during the

Race for Life for Cancer Survivors that I would run 4 miles. And I did! It

took me ~54 minutes, but I did it! I still had plans to run the Women's

4-miler this month, but my hernia repair surgery and subsequent infections

wiped me out for a total of 3 months. 6 weeks was NOT LONG enough to get back

into condition to run this race; and I decided that I did NOT WANT TO WALK

IT! That would have defeated the purpose. So NEXT year I will run the Women's

4-miler!

I started running again only about a month ago and started out slowly: 3

laps, then 4, then 6. Then this past Friday I went outside and ran for 30

minutes. The run may have covered 2 miles, maybe more maybe less. But the

time was important, not the distance. ;^)

What I am telling you is: It is NOT IMPOSSIBLE; easy does it; increase your

distance and speed gradually so you don't hurt yourself (it sounds as if your

book has a good training program for you to achieve success); and YOU WILL

REACH YOUR GOAL!!! GO FOR IT, GIRL!!!

Oh, BTW, I turned 55 in July so none of this I AM TOO OLD as an excuse! LOL

> I am still weight lifting so that is part of the reason things are taking me

> longer. I really can't handle 4 days of heavy cardio exercise and 2 days of

> heavy weight training. It is just too exhausting a regimen for someone just

> beginning to get in shape. And I am really enjoying the weight lifting.

> Even without the trainer.

GOOD! Balance is required. One aids the other. As you become more fit, you

will be able to do more intense cardio along with the weights. You do NOT

want to overdo...that is how people get turned off to exercise. It sounds as

if you are enjoying it. And that is what will keep you going. Appropriate

level of rest is necessary. For a while I was exercising 7 days a week. It

got to be too much; so I cut back to 6. ;^) LOL Sometimes I even take the

whole weekend off!

My goal is 5 days of cardio, 3 of weights every week. That means doubling up

(cardio AND weights) at least twice a week. I was doing that earlier in the

year. But I have not been able to work back up to that YET!

> I have to make a decision soon about whether to remain at this gym. It's

> under new management and it has gone from a very laid back place, to one

> with lots of activity -- which is good for them, but I liked the laid back

> thing; although it is nice to actually see people in the place! It is just

> too hard to give up such a range of weight machines -- though I do use some

> free weights, I am still mostly training with machines and this place has a

> lot of machines most other gyms do not.

If you have no problem getting to use the machines when you want to use them,

you have no problem. It can be more fun when there are others there. ;^) If

you do have to wait to get on machines, if you have the flexibility, change

the time you go to the gym. Or you can go do the free weights. ;^) Free

weights train your muscles differently than the machines do: you have to use

more control, balance. They work you harder than the machines. ;^)

I use free weights (bar bells and dumb bells) twice a week and machines once

a week. I can handle higher weights on the machines, especially for the legs

and arms than I can free weights; this builds the strength. The free weights

I do more reps at lower weights; this builds the muscle's endurance. Both are

good. Both are necessary.

Keep it up, Gal!! You are doing GREAT!

In Charlottesville, VA

Roux-en-Y with Gall Bladder Removal: March 31, 1999, 318 lb.

July 26, 2001 -- 194

5'6.5 "

Certified Personal Trainer with AFAA

[Guest guest]

Hey Shayne, Great to hear things are improving for you. Atarax is a life

saver for Alena. I am so glad you were able to have a nice Christmas and

even work up a sweat!! Is Atarax the only thing you are on? Did you try

the Vit C (if I remember right you were going to) Love, ~Alena's Mom

Update

> Hey folks!

>

> I don't know what it is...maybe just time (more likely the

> combination of having been on 1-2 Atarax daily for a while and the

> change of the weather to cooler) but my Cholinergic Urt has been so

> much better lately!

>

> I've noticed that I can sweat before the itchy warnings of breakout

> occur--if only for a few moments. Before lately, if I thought about

> warmth I'd start itching and getting those red dots all over. Now

> it's like I get a little warm...and I sweat! It's a miracle. I

> know that there is probably no one person more appreciative of sweat

> than I. That's called progress. I remember bouncing about in the

> house tonight, passing out gifts and my mother wiped the side of

> face, saying that I was sweaty.

>

> Apparently my body's own natural cooling system is getting itself

> back together after 18 months of horror with heat hives...

>

> Merry friggin Christmas! (lol)

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

Hanna,

When I was a special ed teacher, I knew I was eligible for family medical leave. I did have to "retire" from teaching at age 25. I am now working as an At Risk Reading Associate. Basically, I am a reading teacher with associate pay, as I do all the lesson plans and parent meetings and such! :-) I do not get the leave for family medical. I get my sick days and that is it. Since my program is funded through a grant, if I am not there, my students do not get served and I get the wrath from the principal. I have already gotten some comments and have tried to put them aside. I have used up all my leave for the year already, with the hospital stay. I am feeling better, just wish my blood pressure would stabilize. They put me on Topamax as a migraine preventative. I am going to start back to work tomorrow (Friday), as I do have a doctor's release. I still do not have the use of the left arm, but the OT was out today and we are starting the ball rolling on an electric chair. This should have been done even before the reaction to the meds! Things will end up as they should and all will go well. I'm still smiling! :-) I do have a co-worker who does think I should go to the HR department, but I am afraid to . . . .

Smiles,

a

a, glad to hear you're home from the hospital. I know how much you want to get back to work but you need to take time and get rest. You mentioned that you think this is putting your job in jeopardy. Are you eligible for family medical leave? That would protect your job while you are not able to work due due to illness in your case. I used to be a human resources manager before taking disability leave. Let me know if you have any questions about family medical leave. Take care.

[Guest guest]

a, I have say how much I admire your spirit and optimism.

That is really too bad that you are under such pressure to return

to work, but I hope it will work out OK for you. I'm glad you are

seeing the OT for help with the WC and the arm. Take it easy

though, Celia

> Hanna,

> When I was a special ed teacher, I knew I was eligible for

family

> medical leave. I did have to " retire " from teaching at age 25. I

am

> now working as an At Risk Reading Associate. Basically, I am a

reading

> teacher with associate pay, as I do all the lesson plans and parent

> meetings and such! :-) I do not get the leave for family medical.

I get

> my sick days and that is it. Since my program is funded through a

grant,

> if I am not there, my students do not get served and I get the wrath

from

> the principal. I have already gotten some comments and have tried

to put

> them aside. I have used up all my leave for the year already, with

the

> hospital stay. I am feeling better, just wish my blood pressure

would

> stabilize. They put me on Topamax as a migraine preventative. I am

> going to start back to work tomorrow (Friday), as I do have a

doctor's

> release. I still do not have the use of the left arm, but the OT

was out

> today and we are starting the ball rolling on an electric chair.

This

> should have been done even before the reaction to the meds! Things

will

> end up as they should and all will go well. I'm still smiling! :-)

I do

> have a co-worker who does think I should go to the HR department,

but I

> am afraid to . . . .

> Smiles,

> a

>

>

> a, glad to hear you're home from the hospital. I know how

much you

> want to get back to work but you need to take time and get rest. You

> mentioned that you think this is putting your job in jeopardy. Are

you

> eligible for family medical leave? That would protect your job while

you

> are not able to work due due to illness in your case. I used to be a

> human resources manager before taking disability leave. Let me know

if

> you have any questions about family medical leave. Take care.

[Guest guest]

a

I am glad you are going to get a power chair. It takes some time, but you

will be glad you have it when it finally gets there.

Don't over-do at work my friend. I know what a perfectionist you are when it

comes to kids.

Hugs,

laurie

>

> Reply-To:

> Date: Thu, 23 Oct 2003 13:34:29 -0500

> To:

> Subject: Re: update

>

> Hanna,

> When I was a special ed teacher, I knew I was eligible for family

> medical leave. I did have to " retire " from teaching at age 25. I am

> now working as an At Risk Reading Associate. Basically, I am a reading

> teacher with associate pay, as I do all the lesson plans and parent

> meetings and such! :-) I do not get the leave for family medical. I get

> my sick days and that is it. Since my program is funded through a grant,

> if I am not there, my students do not get served and I get the wrath from

> the principal. I have already gotten some comments and have tried to put

> them aside. I have used up all my leave for the year already, with the

> hospital stay. I am feeling better, just wish my blood pressure would

> stabilize. They put me on Topamax as a migraine preventative. I am

> going to start back to work tomorrow (Friday), as I do have a doctor's

> release. I still do not have the use of the left arm, but the OT was out

> today and we are starting the ball rolling on an electric chair. This

> should have been done even before the reaction to the meds! Things will

> end up as they should and all will go well. I'm still smiling! :-) I do

> have a co-worker who does think I should go to the HR department, but I

> am afraid to . . . .

> Smiles,

> a

>

>

> a, glad to hear you're home from the hospital. I know how much you

> want to get back to work but you need to take time and get rest. You

> mentioned that you think this is putting your job in jeopardy. Are you

> eligible for family medical leave? That would protect your job while you

> are not able to work due due to illness in your case. I used to be a

> human resources manager before taking disability leave. Let me know if

> you have any questions about family medical leave. Take care.

[Guest guest]

> Hey guys,

> Thought I'd give another little update. I found a wonderful and

knowledgable

> neurologist in my own town finally! He is fairly new to the area and only

has

> appts on Wednesdays and Saturdays here then the rest of the week he works

> closer to DC (I'm in a suburb about 20-25 miles outside of DC). He did his

> schooling in France mainly and is extremely knowledable not only in mito

but in many

> other things.

> take care,

> Adrienne

It sounds like you struck gold with this doctor - and it's about time! It

also sounds like he's really going to try to pull things together and get

you on the right track.

I hope you're recovering from your other trip and tests - and any holiday

frenzy going on in your house!

B

[Guest guest]

> Hey guys,

> Thought I'd give another little update. I found a wonderful and

knowledgable

> neurologist in my own town finally! He is fairly new to the area and only

has

> appts on Wednesdays and Saturdays here then the rest of the week he works

> closer to DC (I'm in a suburb about 20-25 miles outside of DC). He did his

> schooling in France mainly and is extremely knowledable not only in mito

but in many

> other things.

> take care,

> Adrienne

It sounds like you struck gold with this doctor - and it's about time! It

also sounds like he's really going to try to pull things together and get

you on the right track.

I hope you're recovering from your other trip and tests - and any holiday

frenzy going on in your house!

B

[Guest guest]

> Hey guys,

> Thought I'd give another little update. I found a wonderful and

knowledgable

> neurologist in my own town finally! He is fairly new to the area and only

has

> appts on Wednesdays and Saturdays here then the rest of the week he works

> closer to DC (I'm in a suburb about 20-25 miles outside of DC). He did his

> schooling in France mainly and is extremely knowledable not only in mito

but in many

> other things.

> take care,

> Adrienne

It sounds like you struck gold with this doctor - and it's about time! It

also sounds like he's really going to try to pull things together and get

you on the right track.

I hope you're recovering from your other trip and tests - and any holiday

frenzy going on in your house!

B

[Guest guest]

Great job Maxine. You'll reach your goal, have confidence.

Take Care,

Open RYN 4-7-03

351/224/135

[Guest guest]

It does get better Nora. I think I was four months out before I could eat

again. I still can't eat a lot mind you but I can eat without feeling full

on the second bite and without feeling discomfort. When we go out I usually

order an appetizer or a salad or a bowl of soup so that I don't waste so

much. Then I sometimes just share what hubby is having.

I don't think you are really feeling hungry. I think it is the dreaded

" Head Hunger " . I had that at first as well but over time it has gone away

and I can easily tell the difference now. Head Hunger I ignore and real

hunger I feed myself.

Time does make things better. The first 2 months after surgery I so

regretted having done it even though I was losing weight very fast. But now

things have gotten alot better and I am so glad I did it. You will be

amazed and the changes (both physical and emotional) that you will go

through over the next couple of months.

It will get better I promise.

Candi

update

Hi all,

Well I have been on Vaction at Disneyland for 5 days with my family. It is

nice to finally have my husband home. My girls are happy and things are

finally back to normal. It was hard at disneyland with eatting though. I

am

still having a hard time eatting. I am 7 weeks post opp. I throw up alot.

And it hurts sometimes too. I mean when the food goes down. I know i need

to take it really slow but sometimes i think it is not worth eatting

because

it hurts or i throw up. I have some good days. I don't reget any of this

but i

never knew how hard it is. When my family wanted a snack at disney i

couldn't i was fine with that it just makes it so hard when you go out any

where. I waste so much food it is unreal. I miss going out to dinner with

the

family. I just hate feeling this way. not knowing if i am going to eat and

if i

am going to throw up or be in pain when eating. eating is really

unejoyable

for me. I hope i am not alone.. please tell me this is kinda normal? I get

so

frustrated sometimes. i know my usband does to. he says this is getting

old

Nora you need to go slower and be more careful. I get so full so fast but

then in a couple of hours i am hungery again. i really don't eat alot. I

have

lost almost 50 pounds so far though. i do look good..I was 291 at the day

of

surgery now i am 246. i feel good. i work out everyday. i just need so

surport with this eating stuff. i get so hungery then i when i do it hurts

or i

throw up or i really only eat a tiny tiny bit. boy i think everything was

so

easy when i was on my HMR shakes... ok enough from me...

Nora

GB Lap

12-30-03

291-246-150

Dr. Owens

San Diego, CA

[Guest guest]

Glad to hear it missed everyone. I know you're glad that the scan is over--did you get a wave of nausea when the stuff hit your gallbladder? I know I did.

Let us know how does if she is going to work.

Kathy

update

We're fine here. The tornado hit South of us. I talked to in VA and she's ok there too.

I did my hepatobilliary (?) scan this morning then went for lab work and now I'm going to bed. I hope everyone is doing OK. 's supposed to go to work today so we'll see.

ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

The nausea wasn't bad but I had some really bad cramping at the last part of the test. Now to see if he calls in a week or 3 weeks LOL

She says that she's good enough to go. I hope this rain stops before she leaves. She hasn't driven in over a week and I'll be nervous!

update

We're fine here. The tornado hit South of us. I talked to in VA and she's ok there too.

I did my hepatobilliary (?) scan this morning then went for lab work and now I'm going to bed. I hope everyone is doing OK. 's supposed to go to work today so we'll see.

ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Oh, I'd forgotten about the cramps!

I'm sure will do fine.

Kathy

update

We're fine here. The tornado hit South of us. I talked to in VA and she's ok there too.

I did my hepatobilliary (?) scan this morning then went for lab work and now I'm going to bed. I hope everyone is doing OK. 's supposed to go to work today so we'll see.

ChristyPlease visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

,

For me, the numb spots start out as pretty fierce pins and needles and

eventually the area just goes numb. It's been that way for over nine

years now, and I don't know what you feel is numbness. For my hands

and crawling up -- finally stopping just before the shoulder and for my

feet, creeping over the years to my upper thighs I now (after going

through extreme neurlagia and pins and needles) feel only pressure --

no pain and no hot or cold. When a staph infection I contracted while

on cytoxan turned radically septic, my entire body had neuropathy

except my face, which just burned like mad -- eyeballs, lips, and

inside of my mouth included, but things got back to normal after I

tapered down from the massive IV solumedrol they had me on for a minth

in the hospital.

Please don't get discouraged. The numbness sure beats the pins and

needles (I've had a new bout from my left little and ring finger

straight up my arm, around my shoulder and ending in the lymph pocket

which was once my underarm) and certainly the madness inducing

neuralgia. look on the bright side :-) You won't feel any needles,

including IV needles. You could get totally numb feet and break a

couple of toes and never feel it. Duffy, the mtv v-jay and

model, in her book The Model Patient, talks about snapping a couple of

fingers into her purse and not feeling a thing -- discovering the gaff

much later, making her simply embarrassed.

Most likely the numbness will eventually subside, and there are any

number of drugs which can help with the process. Good luck, and may

you feel " weller " in no time.

Reneness, BSF

>

>

> Hi everyone

> My computer at home died a few weeks ago and my brother is trying to

> help me fix it so hopefully ill be able to use it to finish my last

> couple papers for school - i get totally busted if i use this computer

> at work for school stuff. I am trying to catch up on all the email.

> It seems like Ive been waiting forever for results on tests my

> doctors done but by the end of the week I will have something - but Im

> not sure what(lol). the lung dr started me on prednisone - i totally

> tried to fight it and he compromised - im taking 20 mg every other day

> - but i decided to just take it mon-wed-fri unfortunately its been a

> month now and I feel more pain then ever on the days that i dont take

> it and i really dont want to admit that to the doctor because i dont

> want to take more of it.

> Does anyone experience weird numbness on different areas at any time?

> Back in august until almost october my entire head was numb but now it

> just comes and goes in different spots like my forehead or my spine

> and even my chest and stomach its so weird.

> I hope everyone has a great thanksgiving

> gotta get back to work!

> take care and feel good

> julie

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

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>

[Guest guest]

Just wanted to give an update. I just spoke with a lady named Pat and she has

informed me that my packet was sent off to South San Francisco yesterday. I know

I have a long ways to go but it feels so good to know those first steps are

done. I guess now I patiently wait for an approval (no denial LOL).

Kristie

Ripon

>

>

> Date: 2005/01/13 Thu AM 06:54:54 GMT

> To: gastric-bypass-support-kaiser-patients

> Subject: Re: new to group--

>

> Sara, I am rather new also and i am wondering what do you mean by the

orientation?

>

> Thanks Kelli

>

>