Re: Does the pain ever go away? ... how do I help myself when I can't?...

November 4, 2004

JOAN,

After suffering impossibly with out of control neuralgia over most of

my body for eight years, I can truly say that THAT pain is finally

under control. I have to be careful, take my meds, stay away from heat

and stressors, but, yes, I have finally put it in its place for a good

long time for me. Yes, I have all sorts of other pain, a lot of it

really bad, but that was the only one that had me wishing I was dead

several times a week and I and my pain specialist finally have it under

control.

There is always hope. Remember that, Joan.

Lovingly,

> To my Neuro group in physical pain,

>

> I need to know right now ... do all the drugs you have been put on,

> meaning, the MTX, plaquenil, Imuran, Cytoxin, etc., ever help to stop

> the pain?...do these drugs truly put us into remission and stop the

> pain from continuing to destroy us?

>

> I will not be starting my immunosuppresant therapy regimen until

> 11/22. I really need to know. I can and will live with the current

> pain I have in my spine, legs, feet as long as it ends there and as

> long as pain medications continue to lessen it. My arms suddenly

> became involved, too ... is it ever going to end?...or will every area

> of my body which has a nerve linked to it become full of pain?...

>

> I know many of you, and from what I've read, especially Steve, has

> much pain throughout his/her body. What, if anything, really works to

> help the pain in form of pain meds, and what, if anything, really

> stops this monster in its tracks?

>

> I know part of these questions regarding stopping the sarc are stupid

> questions ... given that if anyone knew the answers, we would then

> call it a cure ... I'm really needing answers so that I can start load

> my battlepack (my mind) with the appropriate gear (acceptance,

> understanding, tolerance) in this fight that I've only recently

> learned I will need to battle.

>

> I had planned on one day returning to work and a normal, productive,

> functioning, pain-free life. I was told yesterday to tell my boss,

> who has been holding my job, anyway to tell him to go ahead and fill

> my position ... that my prior beliefs that I only woke up to

> yesterday, are not going to happen and that I need to rid my belief

> that I will be able to return to my job, my old life, etc.

>

> How do I tell my parents that their baby girl is not going to improve

> and will mostly like progress (I'm quoting my dr.'s). How do I tell

> my Joe that he is the main person I will become completely dependent

> on?...How do I tell him that no matter how many times he says the

> ry, it's not going to change my physical state?...How do I tell

> myself that I need to be strong when I am so weak...physically and

> mentally?...How do I fight for a cure or hope someone else does in

> this group, when I know we are all too sick? How do I tell God that

> my faith is now in question?

>

> P.S. For those of you, including myself, who mention God ... God has

> not answered my prayers ... I pray for all of you and all of the

> world's sick children ... perhaps, it can only come in the answer of

> the being able to accept and deal with it, but as I mentioned, I truly

> am only in the very beginning of being able to learn how to do that.

> It is hard to hear, say, understand, accept, etc., anything when your

> body is riddled with pain.

>

> Joan

>

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>

> NS CHAT:- Has been cancelled for now.

>

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November 5, 2004

, I know this question will sound stupid because I should know all your meds, as your assistant BSF, but which med got the neuropathic pain under control? My feet are getting worse by the day, it seems. I don't know whether increasing the Neurontin will help. I see the doctor on Tuesday. Thanks. Oh, BTW, I'll bring Ruby when I come to see Hayden's play, if that's all right. Rose

Re: Does the pain ever go away? ... how do I help myself when I can't?...

JOAN,After suffering impossibly with out of control neuralgia over most of my body for eight years, I can truly say that THAT pain is finally under control. I have to be careful, take my meds, stay away from heat and stressors, but, yes, I have finally put it in its place for a good long time for me. Yes, I have all sorts of other pain, a lot of it really bad, but that was the only one that had me wishing I was dead several times a week and I and my pain specialist finally have it under control.There is always hope. Remember that, Joan.Lovingly,

To my Neuro group in physical pain,

I need to know right now ... do all the drugs you have been put on, meaning, the MTX, plaquenil, Imuran, Cytoxin, etc., ever help to stop the pain?...do these drugs truly put us into remission and stop the pain from continuing to destroy us?

I will not be starting my immunosuppresant therapy regimen until 11/22. I really need to know. I can and will live with the current pain I have in my spine, legs, feet as long as it ends there and as long as pain medications continue to lessen it. My arms suddenly became involved, too ... is it ever going to end?...or will every area of my body which has a nerve linked to it become full of pain?...

I know many of you, and from what I've read, especially Steve, has much pain throughout his/her body. What, if anything, really works to help the pain in form of pain meds, and what, if anything, really stops this monster in its tracks?

I know part of these questions regarding stopping the sarc are stupid questions ... given that if anyone knew the answers, we would then call it a cure ... I'm really needing answers so that I can start load my battlepack (my mind) with the appropriate gear (acceptance, understanding, tolerance) in this fight that I've only recently learned I will need to battle.

I had planned on one day returning to work and a normal, productive, functioning, pain-free life. I was told yesterday to tell my boss, who has been holding my job, anyway to tell him to go ahead and fill my position ... that my prior beliefs that I only woke up to yesterday, are not going to happen and that I need to rid my belief that I will be able to return to my job, my old life, etc.

How do I tell my parents that their baby girl is not going to improve and will mostly like progress (I'm quoting my dr.'s). How do I tell my Joe that he is the main person I will become completely dependent on?...How do I tell him that no matter how many times he says the ry, it's not going to change my physical state?...How do I tell myself that I need to be strong when I am so weak...physically and mentally?...How do I fight for a cure or hope someone else does in this group, when I know we are all too sick? How do I tell God that my faith is now in question?

P.S. For those of you, including myself, who mention God ... God has not answered my prayers ... I pray for all of you and all of the world's sick children ... perhaps, it can only come in the answer of the being able to accept and deal with it, but as I mentioned, I truly am only in the very beginning of being able to learn how to do that. It is hard to hear, say, understand, accept, etc., anything when your body is riddled with pain.

Joan

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

November 6, 2004

Rose,

The neuralgia is mainly controlled by the neurontin but more

importantly the klonipin -- but the two together. However, I've been

on these two meds together for at least seven years, I don't know if

adding the methadone stopped it completely or my complete withdrawal

fram any and all triggers. I do use that oxydose elixer for

breakthrough, but the pain I am trying to control is usually bone pain

(now that I am off of Vioxx) or muscle pain.

For instance, I did much too much yesterday after I had taken some

ritalin -- I managed to pad that tan chair in my living room ( the foam

rubber I put around the arms I finally had to keep together with those

metal tabs that have long flat slats that pinch in the opposite

direction? I had to punch the slats through four layers of the

padding) so that I could finally put on the slipcovers we bought -- I

also did the couch. The covers are a really nice, warm camel corduroy

-- very easy on my sensitive skin when I want to wander out of my bed

and into anoter part of the house. It was a little sad, though, lying

there, just staring at my piano and my sound system. I do hope I find

a way to get more energy from a source that's not so harsh as the

ritalin or provigil.

BTW, it's fine to return Ruby when you come down for the play,. What

night were you coming down?? I am elated you are coming, but I must

admit that I had forgotten that you had agreed to come. Hayden will be

very happy to have you both there. I do hope you are able to get a

script from your doc for one like it. They sell them at Wheelchairs

and More (really freaky name -- too much like Toys are Us or something)

which is just past St. 's hospital to the West on 86th street on

the north side of the street -- in the strip mall just east of the

large Kroger store. (sorry for tmi).

Hope all is going well up there in your end of the woods. Let us know

just which night you are coming down. I look forward to it!

Renenesss

> , I know this question will sound stupid because I should know

> all your meds, as your assistant BSF, but which med got the

> neuropathic pain under control? My feet are getting worse by the day,

> it seems. I don't know whether increasing the Neurontin will help. I

> see the doctor on Tuesday. Thanks. Oh, BTW, I'll bring Ruby when I

> come to see Hayden's play, if that's all right. Rose

> Re: Does the pain ever go away? ... how do

> I help myself when I can't?...

>

> JOAN,

>

> After suffering impossibly with out of control neuralgia over most of

> my body for eight years, I can truly say that THAT pain is finally

> under control. I have to be careful, take my meds, stay away from heat

> and stressors, but, yes, I have finally put it in its place for a good

> long time for me. Yes, I have all sorts of other pain, a lot of it

> really bad, but that was the only one that had me wishing I was dead

> several times a week and I and my pain specialist finally have it

> under control.

>

> There is always hope. Remember that, Joan.

>

> Lovingly,