Re: Rheumy appointment

March 3, 2001

Way to go, ! I AM proud of you. I'm so glad you have decided that

living with the pain day after day is unacceptable.

Best of luck on Tuesday. You're on you way.

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

From: " " <dat2352@...>

< >

Sent: Friday, March 02, 2001 8:29 PM

Subject: [ ] Rheumy appointment

> You will all be proud of me. First of all, last week, I wrote a letter to

> my rheumetologist, Dr. Marks about all that has been going on in my

medical

> life and what I consider possible effects on my RA treatment. That is my

> big surgery, subsequent bleed and blood transfusions and no methatrexate

for

> 2 months. I still have a draining wound. I am also having my 4th

remicade

> on Tuesday. Well when I was in the hospital and on morphine I had no RA

> pain but since being home and on no pain meds I have major pain. I have

> done a lot of reading on several of the websites you recommended, mainly

> Arthritis Insight about pain management and now I have told him this is

what

> I want to address on Tuesday-be prepared. I am. I have made up a list of

> possible options the most promising for improving quality of life seems to

> be oxycodon. I have read with interest some of your comments but I can't

> go on like this. There was a very interesting article on Arthritis

Insight

> called I think " The argument for Narcotics " It made allot of sense to me.

> I have had percoset after surgeries but have pretty much used it as an

> emergency crutch for pain not as a means of addressing chronic pain.

Anyway

> I'm prepared, hope Dr. Marks is too.

>

> Temple

March 3, 2001

Way to go . Go get um! Good luck. Tery - FL

March 3, 2001

,

a put me on sick leave but have to respond to your letter. I love your

attitude and I guarantee this group will support and encourage you to fight

for pain relief.

I was diagnosed many years ago and the standard was to never use narcotics

with chronic pain. That was the dark ages and if you have a doctor trapped

in the dark ages - educate him and if he is not receptive to that - leave him.

It is easy for a doctor to label someone as chronic pain syndrome and use

it as an excuse to quit looking for relief. If the cause of the pain can

be relieved, it is generally best to do that but if the cause can't be

relieved, the pain must be treated and we can't allow doctors to write us off.

My doctors are great at giving me whatever they can to relieve my pain and

they are supportive of me when I want to try different things. My problem

is that I am slow to admit to the pain - even to myself. I am working on it

- with a kicking me in the butt all the way. Once you identify your

pain and share that with your doctor, it is his responsibility to get it

controlled.

You have a great attitude and a wonderful plan - keep it up. We are all

proud of you.

Pat

At 09:29 PM 03/02/2001 -0500, you wrote:

>You will all be proud of me. First of all, last week, I wrote a letter to

>my rheumetologist, Dr. Marks about all that has been going on in my medical

>life and what I consider possible effects on my RA treatment. That is my

>big surgery, subsequent bleed and blood transfusions and no methatrexate for

>2 months. I still have a draining wound. I am also having my 4th remicade

>on Tuesday. Well when I was in the hospital and on morphine I had no RA

>pain but since being home and on no pain meds I have major pain. I have

>done a lot of reading on several of the websites you recommended, mainly

>Arthritis Insight about pain management and now I have told him this is what

>I want to address on Tuesday-be prepared. I am. I have made up a list of

>possible options the most promising for improving quality of life seems to

>be oxycodon. I have read with interest some of your comments but I can't

>go on like this. There was a very interesting article on Arthritis Insight

>called I think " The argument for Narcotics " It made allot of sense to me.

>I have had percoset after surgeries but have pretty much used it as an

>emergency crutch for pain not as a means of addressing chronic pain. Anyway

>I'm prepared, hope Dr. Marks is too.

>

> Temple

>Kuddle Kritters Farm

>3 Fox Haven Way

>Chelmsford, MA 01824

>

>dat2352@...

><http://www.homestead.com/kuddlekrittersfarm/index.html>http://www.homestead.co\

m/kuddlekrittersfarm/index.html

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

><http://www.homestead.com/kuddlekrittersdairygoats/index.html>http://www.homest\

ead.com/kuddlekrittersdairygoats/index.html

>

March 3, 2001

Hey all,

Here's what I worked out to present after already having sent him a warning

letter about my surgery and that this is what I want to discuss. While in

the hospital and on morphine, there was no pain. So narcotics do work and I

never felt doped up.

How has this changed my life?

? Plan my day around my pain

-if need to do laundry do it early morning or late night (on 2nd floor)

-most days need nap

-push myself to do some household chores-vacuuming, cooking, picking up

? Activities that I don't do anymore

-tennis

-volunteering

*was PTO president, on many committees, Girl Scouts, Boy Scouts, 4H, Town

Meeting Representative, School Council

-do not attend as many of my children's activities as I did- concerts,

games, Open House.

-plan their involvement around my pain

-spend time with friends

-shop

-vacations-can't walk

? Other things

-can't help with goats ( a love of my life) - used to deliver babies, milk.

-can't groom dogs-can't hold the clipper-wrist not strong enough

-can't even put my socks both on or clip the nails on my left hand.

Pain Management Research

Tramadol hydrochloride- NON-NARCOTIC ANALGESIC. Binds with opiod receptors

, blocks pain impulse from reaching the brain. May cause seizures with

SRIs- I take zoloft

Vicodin-OPIOD ANALGESIC. Changes the way the body feels pain

TRIAL

Short half-life opiods ( hydrocodone, oxycodone)- 10-15 mgs to start every 4

hours, observe results

POST-TRIAL

Long acting sustained release (oxycodone in 8-12 hour formula)-

-miniwithdrawls do not occur

-Compliance increases-easier

-higher quality of life

-fewer adverse side effects than morphine

Side Effects

-major one-respiratory depression

-nausea-10-40%-treat with antiemetics

-hives-benedryl-just in beginning

-sedation-those with chronic, severe pain usually feel more alert or normal

-constipation-stool softener or fiber

Aquinas

Nothing is intrinsically good or evil, but its manner of usage may make it

so

Of course there are others- sleep on my back because my knees hurt too much

and can't roll over for same reason.

I feel really pushy but I've been through so much!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

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

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

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

March 4, 2001

,

I am very proud of you. Since you have done your research, you know that you

are doing the right thing. You will now find out how compassionate and

understanding your doctor is. If he is from the old school and won't treat your

pain, it will be time to find a doctor that keeps up with changes. If you

print out some of the articles, especially from places like Medscape, which is

written by your doctor's peers, he will know they are reliable. I wish you luck

and will be waiting to hear that you will no longer have to suffer.

a

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

From:

Sent: Friday, March 02, 2001 6:29 PM

Subject: [ ] Rheumy appointment

You will all be proud of me. First of all, last week, I wrote a letter to

my rheumetologist, Dr. Marks about all that has been going on in my medical

life and what I consider possible effects on my RA treatment. That is my

big surgery, subsequent bleed and blood transfusions and no methatrexate for

2 months. I still have a draining wound. I am also having my 4th remicade

on Tuesday. Well when I was in the hospital and on morphine I had no RA

pain but since being home and on no pain meds I have major pain. I have

done a lot of reading on several of the websites you recommended, mainly

Arthritis Insight about pain management and now I have told him this is what

I want to address on Tuesday-be prepared. I am. I have made up a list of

possible options the most promising for improving quality of life seems to

be oxycodon. I have read with interest some of your comments but I can't

go on like this. There was a very interesting article on Arthritis Insight

called I think " The argument for Narcotics " It made allot of sense to me.

I have had percoset after surgeries but have pretty much used it as an

emergency crutch for pain not as a means of addressing chronic pain. Anyway

I'm prepared, hope Dr. Marks is too.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

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

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

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

March 4, 2001

Bravo, ! This is so well done! The Aquinas quote

is the piece de resistance (sp?)..You know what I

mean...I am impressed and it will probably intimidate

the rheumy if he/she is reluctant to follow through).

Good luck.

March 4, 2001

,

I like it! Maybe, too, you may want to describe the pain, in gory detail, to

your doctor. I think I would tell him, in addition to how my life has

changed in terms of things I cannot do anymore, how the pain and my new

physical limitations make me feel, how they have affected my spirit.

You aren't being " pushy " at all. I think you have remained silent about many

very serious issues for long enough. Your doctor needs to understand how

your diseases and surgeries have changed your life and that you need help to

get as much of it back as you can. That is not too much to ask, it is your

right.

Again, good luck! It's great that you are going in so well-prepared.

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

From: " " <dat2352@...>

< >

Sent: Saturday, March 03, 2001 4:59 PM

Subject: Re: [ ] Rheumy appointment

> Hey all,

> Here's what I worked out to present after already having sent him a

warning

> letter about my surgery and that this is what I want to discuss. While in

> the hospital and on morphine, there was no pain. So narcotics do work and

I

> never felt doped up.

>

> How has this changed my life?

> ? Plan my day around my pain

> -if need to do laundry do it early morning or late night (on 2nd floor)

> -most days need nap

> -push myself to do some household chores-vacuuming, cooking, picking up

> ? Activities that I don't do anymore

> -tennis

> -volunteering

> *was PTO president, on many committees, Girl Scouts, Boy Scouts, 4H, Town

> Meeting Representative, School Council

> -do not attend as many of my children's activities as I did- concerts,

> games, Open House.

> -plan their involvement around my pain

> -spend time with friends

> -shop

> -vacations-can't walk

> ? Other things

> -can't help with goats ( a love of my life) - used to deliver babies,

milk.

> -can't groom dogs-can't hold the clipper-wrist not strong enough

> -can't even put my socks both on or clip the nails on my left hand.

>

> Pain Management Research

>

> Tramadol hydrochloride- NON-NARCOTIC ANALGESIC. Binds with opiod

receptors

> , blocks pain impulse from reaching the brain. May cause seizures with

> SRIs- I take zoloft

>

> Vicodin-OPIOD ANALGESIC. Changes the way the body feels pain

>

> TRIAL

> Short half-life opiods ( hydrocodone, oxycodone)- 10-15 mgs to start every

4

> hours, observe results

>

> POST-TRIAL

> Long acting sustained release (oxycodone in 8-12 hour formula)-

> -miniwithdrawls do not occur

> -Compliance increases-easier

> -higher quality of life

> -fewer adverse side effects than morphine

> Side Effects

> -major one-respiratory depression

> -nausea-10-40%-treat with antiemetics

> -hives-benedryl-just in beginning

> -sedation-those with chronic, severe pain usually feel more alert or

normal

> -constipation-stool softener or fiber

>

> Aquinas

> Nothing is intrinsically good or evil, but its manner of usage may make it

> so

>

> Of course there are others- sleep on my back because my knees hurt too

much

> and can't roll over for same reason.

> I feel really pushy but I've been through so much!

>

> Temple

November 27, 2005

Tomorrow I have an appointment with a new rheumy. Always a scary

thought, isn't it? I hope I like him and can bond with him. If he has

time to write me new prescriptions, he'll surely be better than the

last one. That's not really too much to ask, is it? But my pharmacy

called for two weeks trying to get new prescriptions for me from that

last one. That was low down and dirty of him to jest ignore them. I

wonder if he was deliberately trying to get rid of Medicare patients.

Sue

June 11, 2007

Hey Sweetie, please let us know what the rheumy says. I am back on

Enbrel after 3 months off, due to being between insurance companies.

Sure makes a difference. The rain has finally let up and it's the

usual 95 degrees that is Texas in June. You will be in my prayers

today.

Love

Jane

>

> My rheumy visit is Monday. I've been having pain in my lungs and a

> dry cough for awhile now. I'm sure they will do a chest x-ray.

When

> it first started I went to the GP doc, and the PA told me it was

> bronchitis, and gave me inhalers and antibiotics. When I went back

a

> couple weeks later, my GP told me it was whooping cough. I felt a

> little better, and now the last couple of weeks I'm hurting again.

I

> hope to get on a biologic med, I'm hurting so bad, and can't get

> around very well now. Hope your all having a good weekend.

> Hugs, Tawny

>

June 11, 2007

Hi Rose,

Thanks so much for your support, it sure does help. Just know, I'm

always here for you too, Tawny

June 11, 2007

Thanks Tawny -

I cannot tell you how much this group has helped me since I found ya'll.

I am having a really rough day today - filled with a lot of pain, but I overdid

it yesterday. I had an appointment today for the SS doctor evaluation - I have

no clue how I did on it - I do know when he had me close my eyes and stand with

my feet together and hands to my sides I nearly fell over I was so dizzy. We

shall see how it goes...

I try to not get so down, but today I feel down - probably because of the pain

and little sleep last night. So I aired up an air mattress and put it on top of

my bed hoping that will help me sleep better tonight.

I live with my daughter and son in law - and sometimes I feel like my son in law

thinks I am just putting on and not really hurting... His mother has that RSD -

that disease Andy Griffith has - and she is able to blow and go and do things

like a younger person would... of course I think he judges me to what his Mom

can do...

So, I overdid it yesterday trying to do as much as possible so he couldn't

complain and cause grief for my daughter. My daughter knows I am in terrible

pain today - but I don't think my son in law has even noticed.....

Between her 4 month old baby, me and the house, she has her hands full - and I

feel bad I can't do more to help her...

thank you for listening Tawny.... I should have my own computer set up in my

room soon (YEAH!!!) and mabye if you have messenger we can connect that

way too - so when we are having a tough time, we can chat....

Take care hon - I hope you get some rest tonight..

Rose

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

Shape in your own image. Join our Network Research Panel today!

June 11, 2007

Rose,.....Sorry your feeling so down tonight. I'm sure from all

the pain and the appointment today, this is a big part of it. I hope

a good night rest will make you feel better tomorrow. I will pray

for you on the SS, I know it would help so much. Sorry about your SIL

not being supportive. My Mom would do the same thing to me. She is

73 now, and in good health, lucky her. She use to tell me, to just

get out and walk, and I would feel better. Let's say, I got tired of

hearing her, and we don't talk anymore. Are relationship wasn't a

good one anyway, so I just needed to get that negative out of my

life. I just don't understand why someone has to judge someone's

pain, it really gets me. I'm sure your daughter has a lot to do, but

remember she is much younger then her, and a lot healthier. I'm glad

your daughter supports you, maybe one day your SIL will be more

understanding. I have a 15 month old granddaughter, and I can't

imagine taking care of her all the time. But, I am not young and in

good health either. We did do it though, once upon a time. I would

love to IM some time, just let me know. You can email me

anytime,.......I will keep you in my prayers, Tawny

June 12, 2007

Tawny I am so sorry you are hurt so bad. I hope they get you on the new

medication soon.

Will say prayer for you.

Marsha

-- [ ] Rheumy appointment

Went to the rheumy appointment today. I know my RA is getting bad,

but to hear, it's very severe, well it's kind of a wake up call. I

was told if something don't change, I'll be in a wheelchair soon. I

hope to get some help from the Healthwell Foundation, and get on

Enbrel. I will need to be on a biologic med for the rest of my life,

so I was told today. I was taken off the mtx pills, and starting mtx

injections. I was given a steroid shot, so hope it helps soon. I am

not able to sleep anymore, about 4-5 hrs, so was given a sleep

medication, yeah! My ankle is deteriorating, so I should look for

surgery in the near future. So, I am taking it easy tonight, and

hoping a change in meds will help me. Prayers would be greatly

appreciated, Tawny

June 12, 2007

Tawny, I too am sorry u feel sooo bad. Maybe u will feel better soon. I will

put u on my prayer list. I lie around and do Nothing until it passes. Hope

its soon. Soft hugs and Prayers,

Fayray

>From: " marshahostetler " <marshahostetler@...>

>Reply-

>< >

>Subject: Re: [ ] Rheumy appointment

>Date: Tue, 12 Jun 2007 06:33:43 -0500 (Central Daylight Time)

>

>Tawny I am so sorry you are hurt so bad. I hope they get you on the new

>medication soon.

>Will say prayer for you.

>Marsha

>

>-- [ ] Rheumy appointment

>

>Went to the rheumy appointment today. I know my RA is getting bad,

>but to hear, it's very severe, well it's kind of a wake up call. I

>was told if something don't change, I'll be in a wheelchair soon. I

>hope to get some help from the Healthwell Foundation, and get on

>Enbrel. I will need to be on a biologic med for the rest of my life,

>so I was told today. I was taken off the mtx pills, and starting mtx

>injections. I was given a steroid shot, so hope it helps soon. I am

>not able to sleep anymore, about 4-5 hrs, so was given a sleep

>medication, yeah! My ankle is deteriorating, so I should look for

>surgery in the near future. So, I am taking it easy tonight, and

>hoping a change in meds will help me. Prayers would be greatly

>appreciated, Tawny

>

June 12, 2007

Sending some prayers your way Tawny. Sorry you had such a unpleasant visit.

You never know maybe in a year or a few years something new will pop up in the

research their doing.

Joy

tdianaok <tdianaok@...> wrote: