Update on

[Guest guest]

Hi Anne and all,,,

Thanks for the information,,, yes it is helping some,,, till it wears off,,, lol,,,, it is keeping me pretty sleepy though,,, but I dont like being awake through the pain anyways,,, how are you doing Anne?

Re: Update on

wrote:

I was wrong,, it is not Pamelor,,, as I thought the prescription said,, its Panlor?????Hi , I haven't heard of this drug, but it IS a pain medication. Here is the information about it from Walgreen's dot com. http://www.walgreens.com/library/finddrug/druginfo.jhtml?_DARGS=%2Flibrary%2Ffinddrug%2Finfosearchresults.jhtml.27_A & _DAV=14494 I hope it gives you the pain management effects you are hoping for! Love always, Anne ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

wrote:

Hi Anne and

all,,, Thanks for the

information,,, yes it is helping some,,, till it wears off,,, lol,,,, it

is keeping me pretty sleepy though,,, but I dont like being awake through

the pain anyways,,, how are you doing Anne?

Hi ,

I am glad I was able to help!! One suggestion

for keeping your pain under control, is to take your next dose as soon

as you start to get a little bit uncomfortable like every 4 hours (depending

on the Rx directions) until you get the pain under control.

You can't do this for too many days in a row, but it might help to at least

get you past the initial pain. This what we did with my Mom for the

1st couple of days after she got out of the hospital last Saturday.

How I am doing? That is really a loaded

question right now... basically I am existing. Other than that I

don't know.

Love always,

Anne

[Guest guest]

Hopefully you are all right now!!! Will keep reading email to see if there is an update, if not, What happened???

((( Worried Hugs )))

Helen

Hi everyone,,

I wanted to let you know that I am having extreme stomache pains,,, Some of it is my Crohns, and Im not sure about the rest,,, it just doesnt all feel like a Crohns flare up,, I am going to try to get into see my GI today,,, if not Im going to the ER,,, if I dont write you guys back later, They have admitted me and I might be gone for a few days,, so dont worry!!

angelbear1129@...

[Guest guest]

When is your appointment??? How are you doing now??? Pamelor doesn't do anything for me, hope it works for you... Keep us posted!!!

Glad you went to ER to find out what is wrong!

((( Healing Hugs )))

Helen

s Hi everyone, I just wanted to let you

know that I did go to the hospital, they

ran several tests,, blood, exray and an

ultrasound, and didnt see anything.

they beleive it may be an ulcer so I

scheduled an appointment with my GI

to schedule an endoscopy. They did

give me stronger pain medication called

pamalor, Ive never heard of this pain

medication, but sure hope it works!! So

I am at home, so you dont have to

worry!

angelbear1129@...

[Guest guest]

Hey Anne,,

I do try to do that,, but sometimes not possible since I am the designated taxi cab driver here,, lol,, I have to take back and forth to school and bill back and forth to work,,, so gotta keep a clear head,, lol,,, I do hope you are doing okay!!

Hugs

Re: Update on

wrote: Hi Anne and all,,, Thanks for the information,,, yes it is helping some,,, till it wears off,,, lol,,,, it is keeping me pretty sleepy though,,, but I dont like being awake through the pain anyways,,, how are you doing Anne?Hi , I am glad I was able to help!! One suggestion for keeping your pain under control, is to take your next dose as soon as you start to get a little bit uncomfortable like every 4 hours (depending on the Rx directions) until you get the pain under control. You can't do this for too many days in a row, but it might help to at least get you past the initial pain. This what we did with my Mom for the 1st couple of days after she got out of the hospital last Saturday. How I am doing? That is really a loaded question right now... basically I am existing. Other than that I don't know. Love always, Anne ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

You have the Prayers!!! I Do Hope that you start feeling better Real Soon!!!

Love

Helen

Well it seems like today is update day,, so I will add mine,,, the stomach Cramps are getting better,, but still having a very sharp pain in my upper stomach, so I have to pick up some sample meds from my GI tomorrow. I am not experiencing any kidney stones yet, but been having some bad back pain, but hard to tell if it’s the Fibro or not. I will know,,, when it gets to feeling like I want to kill myself, its time to go to the ER…. lol…… Well the bad news is the Meds Im supposed to take for the Crohn's disease , Asacol, I cant buy it anymore, I take 3 tablets 3 times a day and 1 weeks worth of meds cost 100 and I cant afford it! I still have some left over from when I had prescription coverage,, and I was hoping it had went generic by now (Ive been on it for at least 5 years) but nope,, and I have no Idea what Im going to do when I run out,, doctor says there is another medication comparable but it has bad side effects with the stomach, so If I can get the stomach under control I might be able to go on it,, but not until it gets better,, so we will see,,, thanks for keeping me in your prayers,, still need more!!!!

Luv

[Guest guest]

Hey Lee,,, I see my GI again next week I will talk to him about the meds and

see what he says! thanks so much!!!

[Guest guest]

In a message dated 5/30/2003 3:31:18 PM Central Standard Time,

tonynmoo@... writes:

> I dont' want to get caught in a game again

> proving to a doc that he's actually sick by letting the infection get

> full blown.

Oh, Maurita, you hit the nail right on the head. I think sometimes we are

tempted to do that to prove ourselves right when we know our child has something

-- I know when my SIL was scoffing at 's dairy intolerance I felt like

saying, " Let's give her a glass of cow's milk and then you watch what happens. "

But of course I know that would cause pain to for the sake of my ego so

I just grin and bear it.

I'm with you -- he's already been on loads of treatment meds for this

" infection " (or not), so I'd just finish the treatment plan and not risk

something

coming back gangbusters. You're on the homestretch anyway, right? I'd much

rather give a little extra than cut short a treatment.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

What a great post, Kathy! Thank you so much for

sharing all this with us. I found it very interesting

- I think you are doing very well and I'm

really happy for you. I think I'm going to have to

get your address and send you some lollies from the

USA.

(Grandma) Alice

[Guest guest]

In a message dated 6/7/03 1:53:48 PM Pacific Daylight Time,

tanya.claridge@... writes:

> so hopefully a happy, blessed day all round!!

,

Thanks!!! I have a feeling it will be a great day. But I can't wait to

get it over with!!! Maybe about now, you can relate I'll be thinking about

you.

Sandi

[Guest guest]

Sandi..our thoughts and prayers are with you and for the 2nd

July...he sounds such a brave little boy..and so lucky to have a

wonderful supportive family! Make time for yourself in all this!!!!

BTW 2nd July is the due date we have been given for our new

baby....so hopefully a happy, blessed day all round!!

Mum to Jay (8) and (3) (PID, IVIG's via port; EGE, Gastrostomy

fed neocate and food trials

> Hello Everyone,

> I'm praying for all of the pumpkins!! I hope the summer weather

brings

> about some wellness for at least a few months. I wanted to give

everyone an

> update. will be having open heart on July 2nd to replace

his Pulmonary

> Valve. The excellent Dr. Albert Starr will be performing the

surgery--he is one

> of the pioneers in valve transplants.

> I am told that we should be in the hospital for only six or

seven days, and

> that should be up and around in no time. Kids generally do

well with

> this surgery. My older brother is going to be in the OR until

is asleep

> which is a huge comfort to Bri. As many of you know, I'm a single

parent with

> health issues of my own--so my younger brother will be here for me

and for

> Bri. That way, we can go get a bite to eat in shifts. Since he

is healthy, he

> has offered to spend the night with Bri in the hospital. If I can

at least

> get a good night's sleep, and take my Prednisone, I should be able

to handle

> it!!

> I appreciate any and all prayers!!!!! Our first experience

wasn't great,

> to say the least, there were many complications. So, I am hoping

for an

> awesome experience this time--Bri is older and much stronger than

when he was a

> baby. He is handling this like the brave boy that he is. He's

only expressed

> worry about the pain, but nothing else!! Because he's ten now, he

has a Gameboy

> and I have purchased a Walkman for him to use in the hospital.

That way, he

> can drown out the hospital noise if he wishes!!

>

>

> Sandi--Mom to , age 10. Immune Deficiency of unknown origin,

Tetrology

> of Fallot, chronic sinusitis, chronic ear infections, asthma,

severe allergies,

> GERD. Heart surgery pending.

>

>

>

[Guest guest]

Belinda Rose,

Thanks!!! We appreciate the prayers.

Sandi &

[Guest guest]

Sandy,

We will be praying for for a speedy recovery. I am glad you are

comfortable with his surgeon doing this procedure. Please keep us updated

on how he is doing.

Belinda Rose,

Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG

for 6 years, heart condition

[Guest guest]

Sandi:

Best of luck and our prayers will be with you!! Your brother sounds like a

gift from heaven.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

In a message dated 6/9/03 11:56:04 AM Pacific Daylight Time,

bunneegirl@... writes:

> Best of luck and our prayers will be with you!!

Thanks !

Sandi

[Guest guest]

In a message dated 6/9/03 5:10:36 PM Pacific Daylight Time, uahollem1@...

writes:

I hope his recovery is swift and the stay is short.

Hi Ursula,

Thanks for the well wishes and the heads up about pillow cases!!! I don't

know what happening at the hospital these days, because we've managed to avoid

surgery for a year. I hope Macey's eye clears quickly.

Sandi

[Guest guest]

Sandi - good luck with 's surgery. I hope his recovery is swift and the

stay is short. One of the things they'll

have him do is splint his chest with a pillow to cough and keep his lungs

moving. It might be a neat idea to get a

white pillow case before hand and have him decorate it and then use it on that

pillow so it might seem abit more

personal and cheerful. Pillow case decorating has been a big thing at our

hospital lately.

Ursula Holleman

mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus,

colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Sandy,

We want you to know that will be put on our prayer list. Please try

to update us when you get the chance. He is such a brave little boy. God

Bless You.

Belinda Rose,

Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG

for 6 years, heart condition

[Guest guest]

Sandy,

We want you to know that will be put on our prayer list. Please try

to update us when you get the chance. He is such a brave little boy. God

Bless You.

Belinda Rose,

Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG

for 6 years, heart condition

[Guest guest]

In a message dated 7/1/03 2:01:58 PM Pacific Daylight Time, BROSE@...

writes:

> We want you to know that will be put on our prayer list.

Thanks, Belinda Rose. Prayer is making such a huge difference right now in

our lives. I agree-- is the bravest person I know!!

Sandi

[Guest guest]

In a message dated 7/1/03 2:01:58 PM Pacific Daylight Time, BROSE@...

writes:

> We want you to know that will be put on our prayer list.

Thanks, Belinda Rose. Prayer is making such a huge difference right now in

our lives. I agree-- is the bravest person I know!!

Sandi

[Guest guest]

Ray,

Gosh, thanks!! But, yes you could!!! I will be checking Sears and

JCPenney first for the slippers. Maybe they'll be getting some in for fall??

Sandi, 's Mom

[Guest guest]

In a message dated 7/2/2003 1:10:45 AM Eastern Standard Time, SassyKay418@...

writes:

> I agree-- is the bravest person I know!!

Sandi,

I think you're short-changing yourself in this. . .you're my hero! There's no

way I could handle all the things that you've gone through with .

And, on the slippers...have you tried JC Penney? We bought my mom's there last

summer when she had cancer surgery. You might also check your local dollar

stores since sometimes they have those things in odd inventory shipments, know

what I mean?

Ray, mother to Tabitha (age 7), Autumn, age 5 (IgG def., asthma, chronic

sinusitis, and allergies), and Duncan (age 2)

[Guest guest]

Diane,

Thanks for the update. We sure are praying for right now. Keep us

posted.

Belinda Rose,

Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG

for 6 years, heart condition

[Guest guest]

I mean Happy 30th!!!! I hope to make that!

~guin

Turk wrote:

Hi

GailI am glad he is home. Hopefully with coreg he'll be fine and no more

hospitals i want to see you guys celebrate your 50th. EVERYONE congratulate

Dave and Gail they are together for 30 years you believe it? Incredible

in this day and age. Keep me updated Gale. Love TURK