Introduction

May 7, 1999

In a message dated 5/7/99 3:52:39 PM Eastern Daylight Time, kjones@...

writes:

> Hello. I found this list last night at the onelist site, and am very

> interested in becoming part of your 'family' here.

> My name is Kay,

Kay,

Hello to you. I think I have greeted you recently. I am impressed with your

full life in spite of all you endure. Hope to chat more with you soon.

Mad.

May 7, 1999

Hi Kay....Welcome to the list. I'm glad you joined this happy little family.

You've been through the mill with all thats happened to you. I to have been

living with chronic pain for years. I had 4 surgeries on my lumbar area and

still in pain. At the pain center where I live has been helping me out a

great deal. I have an appointment on the 26th of this month for a

myloscopy(scraping scar tissue off the nerves). It sounds painful but it

probably won't be. I've been through so many things at the pain center

nothing seems to work but I'm will to try this new procedure. I do hope you

can get some kind of pain relief. Can you see another doctor for pain meds?

The only drug I was taking is Ultram but it did nothing for me so the doctor

has me on Vicodin and it works but makes me so dopey I feel like a zombie.

Well enough of me babbling. I do wish you well. Take care.

Tammy

Introduction

>

>Hello. I found this list last night at the onelist site, and am very

>interested in becoming part of your 'family' here.

>My name is Kay, and I am married to Stu, who is in the Army, and we are

>stationed at Ft Hood, TX. I have three children - who will be 13

>in July, Tyler who will be 12 in July, and Katy who will be 3 on the

>13th of this month! Besides being mommy and wife, I am an EMT, an

>ordained Christian minister, a web page designer and trivia buff. I am

>an active advocate for attachment parenting, extended breastfeeding, the

>family bed, baby wearing and vegetarianism. However, I do accept all

>people as they are, as our differences make us who we are.

>I have temporal lobe epilepsy thanks to my second husband; asthma;

>grave's disease (total thyroidectomy Nov '98), ulcer and reflux disease

>(gallbladder removed July '98); chronic depression/panic/agoraphobia;

>and so far 3 confirmed ruptured disks in my lumbar spine (I go for

>another MRI monday to see if there are more). I have been living in pain

>since I injured myself the first time at age 22, and I am 31 now. I have

>battled doctors the entire time and been sorely under medicated simply

>because I used to drink. I haven't touched alcohol in over 7 years now,

>yet my doctors still think I am an addict... it is so frustrating trying

>to get pain relief sometimes!

>Anyway, I am glad to be here and hope to get to know all of you very

>soon!

>--

> Kay mailto:kjones@...

> Praise N' Prayer Ministry http://www.vvm.com/~kjones

> His N' Hers Computer Solutions! http://www.vvm.com/~kjones/twogeeks

> Kay's Page http://www.kjsl.com/~kayspage - THE A.P.Site!

> ICQ: 2935300 AIM/YAHOO: KayOfBoz

>

>------------------------------------------------------------------------

>The possibilities are endless!

>http://www.onelist.com

>ONElist has something for everyone!

>------------------------------------------------------------------------

>Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

May 8, 1999

Tammy Hutchins wrote:

>

> Hi Kay....Welcome to the list. I'm glad you joined this happy little family.

Thank you Tammy, me too! :-) It is such a relief to be around people who

understand the pain and don't see me as a " whiner " or a bother..

<snip>

> great deal. I have an appointment on the 26th of this month for a

> myloscopy(scraping scar tissue off the nerves). It sounds painful but

I have never heard of this... you say you have been through several

surgeries with no results? Could you tell me more about that?

I do hope you

> can get some kind of pain relief. Can you see another doctor for pain meds?

<snip>

No, I am on Tricare (hubby in the Army), so I am pretty limited in what

I can do, and the doctors that I have seen just look at me like I am

looney if I come back for refills on the pain meds. I took Ultram for

awhile, and it didn't do anything for me. Now I take Vicoden and

Robaxin, and go in for shots of stadol and torredol (sp?) when I can,

but my doctor still gets all huffy and disapproving when I ask for

refills on the pills. It is so maddening! I would love to have some

literature to print out and hand to him regarding the lack of addiction

in those with chronic pain!

Thank you again for the welcome!!

--

Kay mailto:kjones@...

Praise N' Prayer Ministry http://www.vvm.com/~kjones

His N' Hers Computer Solutions! http://www.vvm.com/~kjones/twogeeks

Kay's Page http://www.kjsl.com/~kayspage - THE A.P.Site!

ICQ: 2935300 AIM/YAHOO: KayOfBoz

May 9, 1999

Hi Tammy,

At 11:13 PM 5/7/99 -0400, you wrote:

>myloscopy(scraping scar tissue off the nerves). It sounds painful but it

>probably won't be

I am thrilled to se that someone is practicing creative

neurosurgery in your neighborhood! Good luck with the surgery.

As far as pain in surgery, anyone smart enough to diagnose the

problem is going to see you get an appropriate anesthetic. (Unless they

depend on your pain for getting the right things done, but I doubt this.)

Ken

May 9, 1999

Hi Kay, (and welcome!)

At 07:25 AM 5/8/99 -0500, you wrote:

>It is so maddening! I would love to have some

>literature to print out and hand to him regarding the lack of addiction

>in those with chronic pain!

I don't have the exact reference, but there is a lead article in

the New England Journal of Medicine (the most respected medical

publication) on chronic pain, probably 2 or 3 years back. The report is

full results of a huge study on chronic pain patient characteristics, with

an enormous number of patients whose information was analyzed. The study

found that less than 1 percent of chronic patients showed characteristics

of drug abuse! And the study found that these people had previous drug

abuse history.

I would say more doctors abuse patients by under-medicating them

than patients abuse drugs. Your doc has to be aware of this study. If he

isn't, he is not reading the leading professional medical publication. Bad,

bad. You might ask him to suggest a more informed colleague.

Ken

May 9, 1999

In a message dated 5/7/99 3:52:40 PM Eastern Daylight Time, kjones@...

writes:

<< I am glad to be here and hope to get to know all of you very

soon! >>

Kay: a very belated welcome to you. I hope you will find this group as

helpful to you as do I.

{{{and pain-free wishes}}}

Carol

" In the little decisions of life, use your mind; in the big decisions of

life, use your heart. " [author unknown]

May 9, 1999

SSo many of our MD's wish us to just work throuh the pain.

I have had them look at me and all but say " It can not be that bad "

I even had the Head of the Rheunatology department at the HMO we are with

tell me as well as write in my chart that he has never seen a patient with

this much pain from AS.

Well I was not feeling the best in the world that day and I left his office

not exactly being nice to this IDIOT.

I have tried to get him to tell me just how many AS patients do you trreat.

Obviously NOT Many.

Jeff

jkeith@...

& The Hounds of Hooterville

Re: Introduction

>

>Hi Tammy,

>At 11:13 PM 5/7/99 -0400, you wrote:

>>myloscopy(scraping scar tissue off the nerves). It sounds painful but it

>>probably won't be

>

> I am thrilled to se that someone is practicing creative

>neurosurgery in your neighborhood! Good luck with the surgery.

>

> As far as pain in surgery, anyone smart enough to diagnose the

>problem is going to see you get an appropriate anesthetic. (Unless they

>depend on your pain for getting the right things done, but I doubt this.)

>

> Ken

>

>------------------------------------------------------------------------

>ONElist: Where Star Wars fans unite!

>http://www.onelist.com

>Find your Star Wars list today!

>------------------------------------------------------------------------

>Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

May 10, 1999

It is so true that most doctors assume the pain patient is either a total

hypochondriac or at best exaggerating the pain level...btw, what is AS?

Mad.

In a message dated 5/10/99 1:00:43 AM Eastern Daylight Time, jkeith@...

writes:

> So many of our MD's wish us to just work through the pain.

> I have had them look at me and all but say " It can not be that bad "

> I even had the Head of the Rheunatology department at the HMO we are with

> tell me as well as write in my chart that he has never seen a patient with

> this much pain from AS.

> Well I was not feeling the best in the world that day and I left his office

> not exactly being nice to this IDIOT.

> I have tried to get him to tell me just how many AS patients do you treat

> Obviously NOT Many.

>

> Jeff

> jkeith@...

> & The Hounds of Hooterville

May 10, 1999

In a message dated 5/10/99 6:06:43 PM Eastern Daylight Time, jkeith@...

writes:

> Mad:

> AS is Ankylosing Spondylitis, a form of arthritis that effects the spinal

> veterbral body, forming " Bony Bridges: across the disk space, basically

> FUSING the spine in one long rigid shaft, that has no flexation.

> The disease can also effect the shoulders, hips.

> I'm still learning about the nasty things this disease can do to us.

>

> Jeff

Thanks for the information...Do you think, if it is diagnosed early that

flexibility motions will slow it down?

Mad.

May 10, 1999

In a message dated 5/10/99 6:06:43 PM Eastern Daylight Time, jkeith@...

writes:

> Mad:

> AS is Ankylosing Spondylitis, a form of arthritis that effects the spinal

> veterbral body, forming " Bony Bridges: across the disk space, basically

> FUSING the spine in one long rigid shaft, that has no flexation.

> The disease can also effect the shoulders, hips.

> I'm still learning about the nasty things this disease can do to us.

>

> Jeff

Thanks for the information...Do you think, if it is diagnosed early that

flexibility motions will slow it down?

Mad.

May 10, 1999

Mad:

AS is Ankylosing Spondylitis, a form of arthritis that effects the spinal

veterbral body, forming " Bony Bridges: across the disk space, basically

FUSING the spine in one long ridgid shaft, that has no flexation.

The disease can also effect the shoulders, hips.

I'm still learning about the nasty things this disease can do to us.

Jeff

jkeith@...

& The Hounds of Hooterville

May 10, 1999

Jeff, it really galls me when a doc or anyone else (my mother-in-law,

for instance) tells me that I can't possibly be hurting as much as I am.

I'd like to be able to " mind-link " with them ala Spock on Star Trek and

give a good dose of what I'm putting up with.

Ray

Re: Introduction

>

> >

> >Hi Tammy,

> >At 11:13 PM 5/7/99 -0400, you wrote:

> >>myloscopy(scraping scar tissue off the nerves). It sounds painful

but it

> >>probably won't be

> >

> > I am thrilled to se that someone is practicing creative

> >neurosurgery in your neighborhood! Good luck with the surgery.

> >

> > As far as pain in surgery, anyone smart enough to diagnose

the

> >problem is going to see you get an appropriate anesthetic. (Unless

they

> >depend on your pain for getting the right things done, but I doubt

this.)

> >

> > Ken

> >

>

>-----------------------------------------------------------------------

-

> >ONElist: Where Star Wars fans unite!

> >http://www.onelist.com

> >Find your Star Wars list today!

>

>-----------------------------------------------------------------------

-

> >Know someone who could profit from our list? Send our direct sign-up

URL:

> http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

> chronic_pain @onelist.com

>

> ----------------------------------------------------------------------

--

>

May 11, 1999

Early diagnosis is always the best. It allows for the patient to be better

educated on what to do to prevent the long term effects, there are many

studies where the early intervention and testing to determine inflamation,

and then the medications perscribed. Hopefully effective, to prevent long

term use of anti-inflamatories.

Pain control plus proper posture, is a VERY Definate plus. Where early

intervention plays a MAJOR part in the successsful treatment.

If you can educate the patient early to sit up straignt, and to avoid

prolonged sitting, walking, or any activity that causes greatly increased

pain.

I feel that had my AS been diagnosed earlier, possibly I could have been

better contollled with meds.

Although many are still basically recieving the treatments of many MD's who

simply uses the process of elimination. If this does not work, then we will

move to the next down the list. ALl the time the patient is not getting

relief, for pain control, and the disease is still advancing and causing

potential damage.

One another thing is patient education on what could happen to them if they

do not be very careful, what could happen, especially if they should

fracture their spine by lifting something too heavy.

Being paralyzed, and or on a ventilator is no ones ideal.

Jeff

jkeith@...

& The Hounds of Hooterville

May 24, 1999

Sheryl,

Thanks for posting. Thanks also for the encouraging words for my

daughter-in-law and her diagnosis of MS. I am sorry to hear of your

disease progression. I will keep you in my thoughts and prayers. Keep

posting!

Ray

----- Original Message ----- > Ray, your posting with regards to your

family member being diagnosed with MS

> is actually the reason I've come on. She is very young yet and she

has a very

> good chance to keep where she is, phsically, because of the new drugs

out for

> MS

May 24, 1999

Hi Sheryl and Cloe

So nice to have you joining Chronic pain. I do have a request though. I

would love to have a copy of the depression article you have. Did you save it

to a file? If so, could you send it again?

Mad.

In a message dated 5/24/99 12:02:05 PM Eastern Daylight Time,

sdavidson@... writes:

> How can I help myself get through depression on a day-to-day basis? " . This

> had a lot of great ideas. Thanks. I printed it and taped it up on my

wall.

>

May 24, 1999

Welcome Sheryl and Chloe, to the group! Sounds like you are dealing pretty

well with MS. My sis-in-law has MS, and took betaseron for several months,

as well as steroids, but right now she's off everything, and doing well.

She's even off her antidepressant now--she came to visit this weekend, and

she looks great. I almost hesitate to say this, given 's law, but her

vision and numbness problems are gone for now. I agree that a positive

attitude does wonders, for anyone with a chronic problem. Sandy has 5 cats,

and they seem to help her as much as mine do me. What does Chloe look like?

That unconditional love and acceptance helps so much! Glad to hear from

you! Kay

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

My name is Sheryl...I am 39 years old, single with no dependents, except my

pussy cat, Chloe, which I love dearly. I have had MS since 1989 and have had

many ups and downs in that time period. In the last 2 years I've moved from

relasing remitting to secondary progressive and at the moment in a 'flare-up'

which has moved me from a manual wheelchair to an electric. It's been a

stugglebut because of people,like you, on the list and my family and friends

(which I must agree with earlier postings - have slowly moved on) I continue to

move ahead. The depression has been a key factor and recently there was a

posting sent on on " how can I help myself get through depression on a day-to-day

May 25, 1999

>From: reese38@...

>

>Welcome Sheryl and Chloe, to the group!

Thank you for the welcome message. I'm like you when it comes to reading

mail. It's always nice to know your not alone in this big bad world.

>Sounds like you are dealing pretty well with MS. My sis-in-law has MS, and

took >betaseron for several months, as well as steroids, but right now she's

off everything, >and doing well.

How old is your SIL and how long has she had MS? What stage of MS is she

in? I'm happy to here she is off everything. Just recently read about the

terrible side effects of solu-medral and predisone. The fellow that wrote

the note said he has MS for 20 years. Been on the steroid treatment

frequently in that time period. He now is having joint replacement surgery.

The doctors don't warn you about these side effects.

>She's even off her antidepressant now--she came to visit this weekend, and

>she looks great. I almost hesitate to say this, given 's law, but

her vision and numbness problems are gone for now.

I also had vision problems (blind) about 3 years ago, (Christmas of all

times) and thankfully I got my sight back. I have numbness from the waist

down all the time but I can still walk (shuffle) a short distance.

>I agree that a positive attitude does wonders, for anyone with a chronic

problem. >Sandy has 5 cats, and they seem to help her as much as mine do

me. What does Chloe look like?

Chloe is beautiful, but what cat isn't! She is a dilute calico. Very

colourful. 8 months old and very much a kitten. Bad most times but makes

up for it when I'm not feeling well. I had a persian for 14 years (Sophia)

which I had to put to sleep because of heart complications. It was the

hardest decision I have ever had to make. I still miss her a great deal and

sometimes have a hard time accepting Chloe into my life. Like everything in

life, it takes time.

>That unconditional love and acceptance helps so much! Glad to hear from

>you! Kay

It is you isn't it that has the multitude of cats? I envy you but I

wouldn't have the patience for so many.

Thanks again for your lovely message. It has brightened my day.

Sher & Chlo

May 25, 1999

>From: reese38@...

>

>Welcome Sheryl and Chloe, to the group!

Thank you for the welcome message. I'm like you when it comes to reading

mail. It's always nice to know your not alone in this big bad world.

>Sounds like you are dealing pretty well with MS. My sis-in-law has MS, and

took >betaseron for several months, as well as steroids, but right now she's

off everything, >and doing well.

How old is your SIL and how long has she had MS? What stage of MS is she

in? I'm happy to here she is off everything. Just recently read about the

terrible side effects of solu-medral and predisone. The fellow that wrote

the note said he has MS for 20 years. Been on the steroid treatment

frequently in that time period. He now is having joint replacement surgery.

The doctors don't warn you about these side effects.

>She's even off her antidepressant now--she came to visit this weekend, and

>she looks great. I almost hesitate to say this, given 's law, but

her vision and numbness problems are gone for now.

I also had vision problems (blind) about 3 years ago, (Christmas of all

times) and thankfully I got my sight back. I have numbness from the waist

down all the time but I can still walk (shuffle) a short distance.

>I agree that a positive attitude does wonders, for anyone with a chronic

problem. >Sandy has 5 cats, and they seem to help her as much as mine do

me. What does Chloe look like?

Chloe is beautiful, but what cat isn't! She is a dilute calico. Very

colourful. 8 months old and very much a kitten. Bad most times but makes

up for it when I'm not feeling well. I had a persian for 14 years (Sophia)

which I had to put to sleep because of heart complications. It was the

hardest decision I have ever had to make. I still miss her a great deal and

sometimes have a hard time accepting Chloe into my life. Like everything in

life, it takes time.

>That unconditional love and acceptance helps so much! Glad to hear from

>you! Kay

It is you isn't it that has the multitude of cats? I envy you but I

wouldn't have the patience for so many.

Thanks again for your lovely message. It has brightened my day.

Sher & Chlo

May 25, 1999

Sheryl and Chloe, I understand why some days you can walk and some days you

can't--same with me, not to mention the 'fibro-fog' that throws a monkey

wrench into my plans frequently. On those days, I can't walk, and I can't

think either--days to be UNDER the bed! The weather affects me a lot; heat,

humidity, front passing thru. My SIS feels that stuff, too; she's 42, and

has had a lot of unrelated symptoms, which an aleret neurologist finally put

together as MS. It was a relief to her to finally be diagnosed, as she

really was thinking she was losing it all, body and mind. She was diagnosed

about 4 yrs. ago; after a few episodes of flare-ups, she got on betaseron,

and , so far, (God willing), she's been OK, tho I hesitate to say it for

fear she'll get worse immediately! She just got her degree from Guilford

College in Dec., and wants to study more now, stuff she likes personally,

like history, geneaology, humanities, etc. I really think school has kept

her motivated a lot to keep going. We're a lot alike, both would like to be

professional students, I guess! Yep, I'm the 'crazy cat lady', but I love

them so! I have a Seal point Siamese, with bobbed tail(born that way), a

Black Himalayan, a Maine Coon, and the rest are domestic shorthairs. Most

I've rescued from bad situations--that's when I realized I can't foster home

them, cos I can't bear to let them leave after I've cared for them. A

friend called me yesterday, having found a small kitten with only one eye,

but I just couldn't take on any more, tho it broke my heart to refuse.

Being retired, my income is strained at the seams to provide for the ones I

have now. We go thru about $50 of cat food and vet care a week(if we're

lucky), not to mention any illnesses, so there's just no way. I did refer

the kitten to foster care, tho, and someone took it, so I'm very relieved.

Chloe sounds beautiful! I'll bet she has a beautiful personality, too.

Have you checked into the cat lists @ onelist? I'm on several, and it's

great to talk with others who share your love of cats; I've gotten a lot of

advice and help from them.. If interested, let me know, and I'll tell you

how to get to the ones I'm on. Hoping you are having a good day--keep in

touch! Kay :-)

Re: Introduction

>

> >From: reese38@...

> >

> >Welcome Sheryl and Chloe, to the group!

>

> Thank you for the welcome message. I'm like you when it comes to reading

> mail. It's always nice to know your not alone in this big bad world.

>

> >Sounds like you are dealing pretty well with MS. My sis-in-law has MS,

and

> took >betaseron for several months, as well as steroids, but right now

she's

> off everything, >and doing well.

>

> How old is your SIL and how long has she had MS? What stage of MS is she

> in? I'm happy to here she is off everything. Just recently read about

the

> terrible side effects of solu-medral and predisone. The fellow that wrote

> the note said he has MS for 20 years. Been on the steroid treatment

> frequently in that time period. He now is having joint replacement

surgery.

> The doctors don't warn you about these side effects.

>

> >She's even off her antidepressant now--she came to visit this weekend,

and

> >she looks great. I almost hesitate to say this, given 's law, but

> her vision and numbness problems are gone for now.

>

> I also had vision problems (blind) about 3 years ago, (Christmas of all

> times) and thankfully I got my sight back. I have numbness from the waist

> down all the time but I can still walk (shuffle) a short distance.

>

> >I agree that a positive attitude does wonders, for anyone with a chronic

> problem. >Sandy has 5 cats, and they seem to help her as much as mine do

> me. What does Chloe look like?

>

> Chloe is beautiful, but what cat isn't! She is a dilute calico. Very

> colourful. 8 months old and very much a kitten. Bad most times but makes

> up for it when I'm not feeling well. I had a persian for 14 years

(Sophia)

> which I had to put to sleep because of heart complications. It was the

> hardest decision I have ever had to make. I still miss her a great deal

and

> sometimes have a hard time accepting Chloe into my life. Like everything

in

> life, it takes time.

>

> >That unconditional love and acceptance helps so much! Glad to hear from

> >you! Kay

>

> It is you isn't it that has the multitude of cats? I envy you but I

> wouldn't have the patience for so many.

>

> Thanks again for your lovely message. It has brightened my day.

>

> Sher & Chlo

>

> ------------------------------------------------------------------------

> What was YOUR favorite part?!

> http://www.onelist.com

> Tell other Star Wars fans at ONElist!

> ------------------------------------------------------------------------

> Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

May 25, 1999