pat

[Guest guest]

In a message dated 01/05/01 11:48:10 AM Eastern Standard Time,

newjersey23@... writes:

<< I found out that my Doc put RA on the letter to get Enbrel approved

for me. What kind of world do we live in that doctors have to " fib "

in order for their patients to get relief? PatB

>>

Pat - Mine fibbed as well, although I never did follow thru as the MTX seemed

to keep everything at a place I could deal with. Makes you wonder if there

is any hope at all for the heath care profession (or make that INSURANCE

plans) in the future

[Guest guest]

Mike,

YOur doctor not giving you Enbrel because it's not approved for PA is one of

the most ridiculous things I've ever heard!! Do not take no for an answer.

Switch doctors if you need to! It's clear from all the info on this list

that Enbrel is effective for people with PA. Don't give up on trying to get

it.

Sara in LA

[ ] Pat

Pat B.. I was just reading some of your posts . And i'm amazed at

your sense of humor... Especially all the medical stuff you have going

on... Thats a really good thing... Keep staying positive.. Its the only

thing we can do.......

I havent posted in a while.... But i'm still in alot of pain... (shoulders ,

lower back mostly) And the cold weather in newjersey isnt helping either...

Anybody know if enbrel is approved for PA yet? My stupid doctor wont give it

to me because it isnt approved yet.. only for RA...... And i'm not taking

any meds until enbrel gets approved... (yea i know , i might be waiting a

long time)

take-care all.....

Newjersey aka Mike,

I found out that my Doc put RA on the letter to get Enbrel approved

for me. What kind of world do we live in that doctors have to " fib "

in order for their patients to get relief? PatB

[Guest guest]

Hi pat,

Give it more than a week. My 12 yo ds has Aspergers.

We've been on for 16 days and just now starting to see

the improvements. I was the same way after a week I was

wondering why I hadn't seen anything. It's exciting

when the improvements start though!

Darlene

[Guest guest]

Thanks Darlene for the encouragement. I plan on staying on the enzymes

[barring any unforeseen difficulties] for at least a year. My Dear Daughter

is 19 so she has had lots of years to make up for.

pat

[Guest guest]

--- <patriciajean@...> wrote:

> Claudine... you awake too?

>

Just barely! I'm getting myself to bed NOW!

__________________________________________________

[Guest guest]

--- <patriciajean@...> wrote:

> Claudine... you awake too?

>

Just barely! I'm getting myself to bed NOW!

__________________________________________________

[Guest guest]

tell her i want to come and rub her. i need some of her strength!!! kathy in

il

[Guest guest]

a,

Thank you very much for the update on one sweet lady. I have often thought

about her and as soon as the idea comes into my head, it leaves twice as fast!

She is really an inspiration to all of us and she is missed dearly. Please

give her my love and bunches of hugs. If she ever has a minute of free time

(which I doubt), we will all be waiting here with open arms and a very loving

heart.

Thanks once again for the update on one of our founding favorites and please

convey our heartfelt thanks for just being her. She may be out of sight, but

never out of mind.

Gentle, tender, angel hugs,

Debs in FL

[Guest guest]

I second that, Debs! I really miss Pat and her straightforward wisdom,

true kindness, and terrific sense of humor. We are not the same without

her, but I certainly understand why she can't be here right now. I pray

for her continued improvement.

[ ] Re: Pat

> a,

>

> Thank you very much for the update on one sweet lady. I have often

thought

> about her and as soon as the idea comes into my head, it leaves twice

as fast!

>

> She is really an inspiration to all of us and she is missed dearly.

Please

> give her my love and bunches of hugs. If she ever has a minute of

free time

> (which I doubt), we will all be waiting here with open arms and a very

loving

> heart.

>

> Thanks once again for the update on one of our founding favorites and

please

> convey our heartfelt thanks for just being her. She may be out of

sight, but

> never out of mind.

>

> Gentle, tender, angel hugs,

>

> Debs in FL

[Guest guest]

Me too June. She¹s one strong lady! I¹m sending your well wishes onto Pat.

Hugs,

a

> Thanks a,I have nothing but admiration for Pat and recall at the support

> she gave our members,along with her wonderful sense of humor. Please tell her

> how often she is thought of by those who have been honoured to know her since

> the beginning.

>

> Hugs

> June

>

>

>

[Guest guest]

i hope so. i am so down on myself and scared thanks for writing back.

pat

[Guest guest]

Hi...Its great your progressing. Im on 6 mp and have had no problems. Im one of those who's bloods took a long time to come right (3 years on pred). 6 mp has worked for me as I couldnt tolerate immuran. One of the best wines I enjoyed was called 'Cold Duck' and that was many moons ago. Alas I no longer enjoy the occasional wine, only a glass with Christmas dinner. The vineyards here are spectacular, up until recently, the vines were bulging with grapes.

Let us know your results.

Love Jan

Re: [ ] autoimmune hepatitis....anyone else out there??? yes

Hi I'm Pat from New York and I sell wine from all over the world and in NZ you have some of the Sauvignon Blancs in the world down there. anyhow when people ask me about my illness now i tell them i have an immune disease, after all it doesn't look to good when my customers hear i have hepatitis and i sell wine and spirits! i think they invision me as a lush sitting at a bar when in fact i don't drink at all. i was diagnosed in 6/2001. with ast & alt over 3000 i've been on pred for 17 months. Im now down to 5mg along with 6mp with fingers crossed i get blood work today and pray this combination works. I could not tolerate immuran and cellcept did not sem to help enough. It's been helping me to share stories on line. sort of venting with out looking for a pity party.good luck , many prayers.Pat

[Guest guest]

Dear Pat, I had cervical surgery on three levels in December and in

May. I had the cadaver bone as well as the titanium plates. I was in

the hospital for two days. I had so much pain pre-op that post-op

pain was not as bad as I expected. I had so much pain relief that the

surgical pain was a blessing. Most people are out of work for 6 weeks

and cannot drive for about the same amount of time according to the

way my doctor handles things. I wore a soft cervical collar for 12

weeks but my doctor is VERY conservative. Please don't be afraid and

I will pray for you Pat. I wish well.

In light and love,

Jewel

> Hi!

> I am scheduled for a C4/c5 anterior cervical discectomy in the

> morning--Dr. will use cadaver bone and titanium plate and screw.

How

> bad is the post-op pain???? I'm scared to death and would

appreciate

> some input. How long does it take to do things like drive or work?

If

> anyone is out there, please answer tonight. I'm leaving for the

> hospital at 5am. Thanks PatQ

[Guest guest]

--

Had the C4-/5 done and was in the hospital for 2 days. Is it normal

to feel a lot of tingling in your arms and legs afterwards? The

incision doesn't hurt too much but the numbness is worse. My Dr. said

to wear the collar if I wanted to for suppoer, but it wasn't

necessary because of the titanium plate. Of course there is no Dr.

available today to answer my questions. Sure am glad the surgery is

over. Thanks for writing. Pat Q

- In spinaldisorderssupport , " jewels09192000 "

<jewels09192000@y...> wrote:

> Dear Pat, I had cervical surgery on three levels in December and in

> May. I had the cadaver bone as well as the titanium plates. I was

in

> the hospital for two days. I had so much pain pre-op that post-op

> pain was not as bad as I expected. I had so much pain relief that

the

> surgical pain was a blessing. Most people are out of work for 6

weeks

> and cannot drive for about the same amount of time according to the

> way my doctor handles things. I wore a soft cervical collar for 12

> weeks but my doctor is VERY conservative. Please don't be afraid

and

> I will pray for you Pat. I wish well.

>

> In light and love,

> Jewel

>

>

>

>

> > Hi!

> > I am scheduled for a C4/c5 anterior cervical discectomy in the

> > morning--Dr. will use cadaver bone and titanium plate and screw.

> How

> > bad is the post-op pain???? I'm scared to death and would

> appreciate

> > some input. How long does it take to do things like drive or

work?

> If

> > anyone is out there, please answer tonight. I'm leaving for the

> > hospital at 5am. Thanks PatQ

[Guest guest]

Well, drats. Makes me wish I still lived in Louisville:)

Patty

[Guest guest]

Come on back Patty! I do want everyone to know Lousiville is not only proud of FACES..LOL we boast and show extrem pride on April 17th which is Thunder over Louisville! This is the opening event of the (Kentucky)Derby Festival and an absolute wonder to see. During the day there is an awesome airshow then around 9:30pm and extravagant and mind blowing fireworks display over the river. One of the bridges is actullay an impressive waterfall of fireworks!! For anyone close enough to come and enjoy I invite you to attend. I usually find me a spot on the great lawn at waterfront park and set up for the entire day. If ya wanna join us let me know..FACES gang this is of course an invite to you too!!!!

Hugs and Smiles! Donna

[Guest guest]

Pat, I second Marina's motion, for you to take care of yourself. You

are bound to get burned out with such a schedule. Maybe there are some

health services available in your area that could help out. I really

don't see how you manage all that you do. Sue

On Friday, April 29, 2005, at 10:24 PM, marina_troi wrote:

>

> Sounds to me like you need a little YOU time. Is there no one who

> cvan stay with your husband for a while so you can go rest or spoil

> yourself at a salon or spa?? You gotta take care of you!! It does

> make a difference venting to those who get it, doesn't it?...Marina

[Guest guest]

Pat, I second Marina's motion, for you to take care of yourself. You

are bound to get burned out with such a schedule. Maybe there are some

health services available in your area that could help out. I really

don't see how you manage all that you do. Sue

On Friday, April 29, 2005, at 10:24 PM, marina_troi wrote:

>

> Sounds to me like you need a little YOU time. Is there no one who

> cvan stay with your husband for a while so you can go rest or spoil

> yourself at a salon or spa?? You gotta take care of you!! It does

> make a difference venting to those who get it, doesn't it?...Marina

[Guest guest]

Pat, if you live in the DC/Baltimore area, I also recommend Washington

University in downtown DC. I have seen several rheumatologists at their

outpatient clinic, Medical Faculty Associates (www.gwdocs.com) and I've been

really happy with them.

Re: [ ] Flare-up tips and advice

> Hello :

>

> I check in occasionally to see if anything's new. I'm 53 and was

> diagnosed with RA (two opinions) two years ago. Plaquenil gave me diarhea;

> I still haven't taken any of the other RA meds, because they're so toxic

> and my symptoms are very mild. Otherwise, I'm very healthy and rarely get

> a cold/flu/infection.

>

> I have never had a flare-up like the one described in the original

> message I'm replying to. My symptoms are controlled with one Aleve each

> day, and often I'll skip a day.

>

> Is there a sane reason to begin taking methotrexate, and start the misery

> described in so many of the emails?

>

> I am considering getting a 3rd opinion, from s Hopkins Univ., since I

> live nearby. How can I find a good rheumatologist there?

>

> Thanks for your help!

>

> Pat

__________________________________________________

[Guest guest]

Amen !!!

<Matsumura_Clan@...> wrote:

Staying ahead of the disease is important. You would rather prevent flares

from occurring in the first place than try to calm them down time after

time.

Not an MD

Re: [ ] Flare-up tips and advice

> Hello :

>

> I check in occasionally to see if anything's new. I'm 53 and was

> diagnosed with RA (two opinions) two years ago. Plaquenil gave me diarhea;

> I still haven't taken any of the other RA meds, because they're so toxic

> and my symptoms are very mild. Otherwise, I'm very healthy and rarely get

> a cold/flu/infection.

>

> I have never had a flare-up like the one described in the original

> message I'm replying to. My symptoms are controlled with one Aleve each

> day, and often I'll skip a day.

>

> Is there a sane reason to begin taking methotrexate, and start the misery

> described in so many of the emails?

>

> I am considering getting a 3rd opinion, from s Hopkins Univ., since I

> live nearby. How can I find a good rheumatologist there?

>

> Thanks for your help!

>

> Pat

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Pat,

I also live in the Baltimore area. I echo the suggestion that you go to Hopkins.

They have

taught me so much and helped me in many ways. According to my rheumatologist at

Hopkins, yes, there is a good reason to begin Methotrexate now. It can keep you

from

developing joint damage in the future. As my doctor said to me at my initial

diagnosis, " We

can probably keep you from becoming disabled. " That got my attention! I don't

know at

what point the decision to start the drug is made but I do not have swollen

joints or any

outward manifestation of the disease. A bone scan confirmed my diagnosis and I

am

thankful to be taking the drugs I take that will, hopefully, make the

progression of this

disease slower and less dramatic.

Hopkins has a rheumatology clinic at the Bayview campus and there is a

rheumatology

clinic at Greenspring Station. Please consider calling them.

Good luck!

Pat

>

> Pat, if you live in the DC/Baltimore area, I also recommend Washington

University in downtown DC. I have seen several rheumatologists at their

outpatient clinic,

Medical Faculty Associates (www.gwdocs.com) and I've been really happy with

them.

>

>

> Re: [ ] Flare-up tips and advice

>

> > Hello :

> >

> > I check in occasionally to see if anything's new. I'm 53 and was

> > diagnosed with RA (two opinions) two years ago. Plaquenil gave me diarhea;

> > I still haven't taken any of the other RA meds, because they're so toxic

> > and my symptoms are very mild. Otherwise, I'm very healthy and rarely get

> > a cold/flu/infection.

> >

> > I have never had a flare-up like the one described in the original

> > message I'm replying to. My symptoms are controlled with one Aleve each

> > day, and often I'll skip a day.

> >

> > Is there a sane reason to begin taking methotrexate, and start the misery

> > described in so many of the emails?

> >

> > I am considering getting a 3rd opinion, from s Hopkins Univ., since I

> > live nearby. How can I find a good rheumatologist there?

> >

> > Thanks for your help!

> >

> > Pat

>

>

>

>

> __________________________________________________

>

[Guest guest]

I'm making an appointment at s Hopkins. Thanks!

bitsysguest <pmandell@...> wrote: Pat,

I also live in the Baltimore area. I echo the suggestion that you go to Hopkins.

They have

taught me so much and helped me in many ways. According to my rheumatologist at

Hopkins, yes, there is a good reason to begin Methotrexate now. It can keep you

from

developing joint damage in the future. As my doctor said to me at my initial

diagnosis, " We

can probably keep you from becoming disabled. " That got my attention! I don't

know at

what point the decision to start the drug is made but I do not have swollen

joints or any

outward manifestation of the disease. A bone scan confirmed my diagnosis and I

am

thankful to be taking the drugs I take that will, hopefully, make the

progression of this

disease slower and less dramatic.

Hopkins has a rheumatology clinic at the Bayview campus and there is a

rheumatology

clinic at Greenspring Station. Please consider calling them.

Good luck!

Pat

>

> Pat, if you live in the DC/Baltimore area, I also recommend Washington

University in downtown DC. I have seen several rheumatologists at their

outpatient clinic,

Medical Faculty Associates (www.gwdocs.com) and I've been really happy with

them.

>

>

> Re: [ ] Flare-up tips and advice

>

> > Hello :

> >

> > I check in occasionally to see if anything's new. I'm 53 and was

> > diagnosed with RA (two opinions) two years ago. Plaquenil gave me diarhea;

> > I still haven't taken any of the other RA meds, because they're so toxic

> > and my symptoms are very mild. Otherwise, I'm very healthy and rarely get

> > a cold/flu/infection.

> >

> > I have never had a flare-up like the one described in the original

> > message I'm replying to. My symptoms are controlled with one Aleve each

> > day, and often I'll skip a day.

> >

> > Is there a sane reason to begin taking methotrexate, and start the misery

> > described in so many of the emails?

> >

> > I am considering getting a 3rd opinion, from s Hopkins Univ., since I

> > live nearby. How can I find a good rheumatologist there?

> >

> > Thanks for your help!

> >

> > Pat

>

>

>

>

> __________________________________________________

>

[Guest guest]

dear lottie, pat is unable to work to to his health but he does attend a day

program. the great thing is pat is able to drive so we can go places together as

i am unable to drive. he has had cml for one year and seems to be doung well on

the gleevec. he goes for another bma/bmb in november and we are hoping for

better results. we are all on this ride together and i am so grateful for this

group as we learn from each and everyone. i will tell more as time passes. love

to you lottie. as always peggy bieber

[Guest guest]

What did the nock you down with? just IV sedation?

In a message dated 6/8/2011 8:10:58 A.M. Eastern Daylight Time,

nancyr44@... writes:

I had both hips replaced in 2009. Both times I had an epidural and was

not

awake during the procedure, but did not have the tube down my throat. I

would do it the same way again.

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

From: " Goldie " <starwatch1900@...>

>I was wandering could someone give me advice, I am getting a hip

>replacement and I just dont know what to do, my Dr mention having an

>epidural in my back to block pain for surgery or if I wanted I could be

put

>to sleep, I dont know which way to go any advice would be appreciable,

>thank you all.

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

Be your own advocate! The best patient is an informed patient!

Groups Links

[Guest guest]

You're going to get plenty of opinions here both ways. Some prefer one method,

some the other and usually passionately on both sides.

I  prefer to go to sleep and wake up when it's all over. But that doesn't make

that the right choice for anyone else.

Big help, right?

good luck,

Jeff

From: Goldie <starwatch1900@...>

Joint Replacement

Sent: Tuesday, June 7, 2011 9:24 PM

Subject: PAT

I was wandering could someone give me advice, I am getting a hip replacement and

I just dont know what to do, my Dr mention having an  epidural in my back to

block pain for surgery or if I wanted I could be put to sleep, I dont know which

way to go any advice would be appreciable, thank you all. 

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