Re: Pain & Tired, Very Tired

[Guest guest]

Tracie, I'm Lori. I have neurosarcoidosis. I have been dealing with it in

my lungs for two years and now in my brain. I hurt daily. My head hurts so

bad sometimes it hurts to lay down on the pillow. My hands, neck, fingers,

knees, hips, ribs, ankles and everthing else hurt, different places

different days. I love this post. My doctor told me tro try Motrin about

three months ago. That was a joke. I cannot take Aleve or anything like

that anymore because I developed crypt abscesses in my GI tract and had a

upper endoscpoy and colonoscopy a few months ago with a GI bleed. I called

a few days ago and he gave me one month of Tylenol #3. That is not helping.

I go down to University of Michigan on Wednesday for my next appointment.

I will see what he thinks. Yes, I worry about what they think and getting

" addicted " to the meds, so I try not to take them and then before you know

it your really hurting and it is too late. I am also very confused and am

trying to take it day by day. I am on Imuran, Plaquenil, and chemotherpy

(Cytoxan and Mesna) every four weeks. I have a good sense of humor and try

to keep laughing and making jokes or else you would be crying all the time.

My uncle lives in Thailand and says he has 273 Buddist monks praying for me

and I will take all the help I can get. Thanks for making me not feel all

alone. Lori

>From: tiodaat@...

>Reply-To: Neurosarcoidosis

>To: neurosarcoidosis

>Subject: Pain & Tired, Very Tired

>Date: Mon, 29 Jan 2007 18:58:20 EST

>

>Daily we wake up, and the challenge of getting out of bed begins. Someone

>said that they take inventory to see if all the parts are working. That

>truly

>says what we all experience.

>

>Some days the pain is more than we can handle-- and we wonder why we keep

>on

>keeping on.

>

>This is what I want to address. Why do we keep on keeping on? What happens

>when the Depression of chronic illness and chronic pain becomes bigger than

>our

>spirit can handle?

>

>We do so because we have families that love us. We do so because we want

>to

>live, and work, and see another rainbow. We do so because we love

>listening

>to music, seeing a childs reaction at the first snowstorm, and hearing

>their

>precious laughter at trying to catch a snowflake on their tongues as it

>falls

>from heaven.

>

>The grief that comes from chronic illness is often times unrelenting. At

>least it seems that way when we are buried in it. We question the constant

>pain-- and want it to go away. It seems that with all the advances of

>modern

>medicine that there has to be an answer. When that answer is not

>forthcoming, we

>find ourself in despair, and we want someone to understand that we aren't

>nuts,

>we aren't hypochondriacs, we aren't lazy, and we aren't trying to get our

>fix

>on painmeds.

>

>With chronic illness, it is so much like losing a part of yourself. You no

>longer have the energy to work, to get on your best face, to go grocery

>shopping, or for a walk thru the mall. Best we stay away anyhow-- we don't

>have

>spending money to shop. so we find ourself sitting at home, isolated, and

>in very

>real pain.

>

> " So great Tracie, you understand. I'm still in pain " -- is what you want to

>scream! Fix it!

>

>If you don't have an MD that is willing to be serious with your pain

>issues--

>find one that is. There is no sin in needing to be on pain medications.

>If

>what you are using is not controlling your pain-- take someone with you

>into

>the MD's-- and have a serious talk with him or her. There is no reason why

>in

>todays medical setting, that our MD's aren't up on treating chronic pain

>issues.

>

>To control pain requires two things of us. The courage to be real with our

>MD's and family, and the ability to advocate for yourself. Yep, I said it--

>fight for what you need.

>

>Assertiveness versus aggression. We've had people come online and tell us

>that they ripped their MD's new assholes (ok, my words--but you get the

>concept); and that they still weren't heard. They yell at the

>receptionist--who is at

>best a messenger, that will be griped at by a moody, exhausted, MD and

>back-office nurse. The office staff then assumes that the patient has a

>hangup

>about pain and is a " whiner. "

>

>We know that's bullshxx, and we have a right to tell the MD that we aren't

>exaggerating. if they still blow you off- find someone else. Don't worry

>about

>the records-- get the test results from the hospital, labs, xrays, and

>screw

>the office notes from Dr. X. His opinion, as well as the that of the staff

>is

>one based on the programs from 60 minutes that say all workcomp claims are

>bogus and people needing pain medications for any reason are probably

>druggies.

>

>In a second post-- I will explain pain control techniques. This post I

>truly

>want to tell all of you that yes, we have a serious illness. Your MD

>doesn't

>understand it- has formed an opinion based on the messages that he gets

>from

>his receptionist and nurse-- and that their opinions are more important

>than

>your reality.

>

>So if the body language of the office staff is bad-- if you feel like maybe

>the MD is getting the " she called again, want's more Vicodin, we gave her

>10

>tablets last month, and she ran out in 2 days. . (insert bored,

>discompassionate voice at 6pm on a Monday night- so 100 phone calls have

>been answered and

>the hangover from the weekend play lasted until 2pm) and you've got the

>scenario.

>

>Now- I'm not saying any of this is right. In fact, it is so very wrong--

>that I want to scream also.

>

>So- sit down with your MD-- pull your chair in front of the door, and don't

>move until you have made your point. You are paying the MD-- he works for

>you.

>

>

>Don't yell and cuss out his staff. They are messengers. And they hold the

>power in their hands as to whether you need this medication, or you need a

>psychiatrist. (Personally, I like psychiatrists--they understand the brain

>chemistry so much better, and know that if any part is out of sync- it has

>to be

>rebalanced, so that pain CONTROL is maximized. ) The Anger is

>self-destructive,

>and is also part of the Grief. But it has to be redirected so that it

>works

>to your benefit.

>

>One of the best methods of pain control is meditation. Weil, MD

>has

>a Body/Mind Connection Box that includes guided imagery and meditation.

>You

>can get it online or at Costco. It's great! We have to learn to relax

>every

>muscle and ligament in our bodies, and we have to learn to turn off our

>brains-- and shut down some of that chatter that is constantly reminding us

>how much

>we hurt.

>

>Bargaining is part of the cycle of Grief. How many of you find that you

>spending your days frantically searching for a way to handle your

>sarcoidosis

>issues? Do you find yourself holding your body tight, clenching your jaw,

>are

>your shoulders connected directly to your ears-- your neck tensed down into

>what

>feels like your abdomen? Do you find yourself fearing what the future may

>hold? Are you scared that if you lose your job, your careers, your

>livelyhoods,

>your husband or wife, that your world will crumble?

>

>If you aren't -- you're probably in Denial. However, to stay in this place

>of fear is to lose what we do have. We have today. We have that love and

>caring of our families and our kids. They want and need us. They are

>scared too,

>and that's ok. Especially if you will talk with them-- and let them know

>that even though you don't have a handle on your disease, that you still

>love

>them- and need them. They are feeling desperate also, because they too are

>powerless.

>

>This can destroy you, or it can build you up in a place that you've never

>dreamed existed. Marla spoke about reframing and redetermining what is

> " normal. "

> This is what begins Acceptance.

>

>The Five Stages of Grief: Denial, Depression, Anger, Bargaining, and

>Acceptance are are issues we deal with. You will go from phase to phase,

>and in and

>out of each one- many times over. That's ok.

>

>We have to give ourself the permission to work through these issues, and we

>have to give our permission to talk candidly with our MD's-- and let them

>know

>that we need them on our team. If you feel that your MD's and their staff

>have decided that you are abusing your pain meds, or abusing alcohol, or

>are

>depressed-- speak up!

>

>This disease comes with pain. It takes time to get all the kinks worked

>out,

>and it may take Methadone or Oramorph or Fentanyl patches to control your

>pain. This doesn't mean you're a junkie. It means you have serious pain

>issues

>that IF you can get under control, you can be a more functional human

>being.

>

>If you have chronic pain-- then it means you need chronic pain control--

>CONSTANT pain control! If you take the medication only when you've gotten

>to such

>a place that you can't handle the pain-- you've waited way to long --and

>that

>is not how pain control works.

>

>Long enough post for now-- I'll get the other articles on pain management

>together-- there is many in the ARCHIVES. Please, be kind to yourself and

>talk

>to your MD. You can handle this disease and the pain issues-- if you can

>be

>part of your team with the help and coaching of your MD.

>

>Blessings,

>Tracie

>NS Co-owner/moderator

_________________________________________________________________

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[Guest guest]

I have neurosarcoidosis. I have been dealing with it in

my lungs for two years and now in my brain. I hurt daily. My head hurts so

bad sometimes it hurts to lay down on the pillow. My hands, neck, fingers,

knees, hips, ribs, ankles and everthing else hurt, different places

different days.

Seriously, try the MSM powder. 1tbsp in 1/4 cup of water, drink it down-- you will be amazed!

I love this post.

Thank you!

I cannot take Aleve or anything like that anymore because I developed crypt abscesses in my GI tract and had a upper endoscpoy and colonoscopy a few months ago with a GI bleed.

In the last couple of weeks, following my last Remicade infusion, I developed serious gastritis. My MD put me on Carafate, and on Aciphex. I can't believe it, by the second dose- my gut was calmed down, and I don't feel like i'm going to blow up. Crazy woman thought she'd addressed this issue long ago, but we hadn't gone there--- and fortunately, I didn't wait for it to turn into a bleed. You might want to see if they can give you an "acid-blocker" and the "carafate"- to coat your stomach so that you can take the meds you need. It's an idea.

In the meantime-- keep a journal of what you're eating and drinking. If you continue to have the pain in the head-- tell the MD-- you may need a spinal tap to rule out encephalitis or sarcoid meningitis.

I would try to increase my fluid intake - stay away from caffeine, alcohol, and sodas. They all dehydrate. If you can- drink juices that have no sugar or high fructose corn syrup. If not, go with water and herbal teas.

Simple changes can bring drastic results. I speak from my heart on this-- because it was the "last resort" and it should have been the first. Hmm.

Do take care, and balance-- balance is the key.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Dear Tracie,

Your message left me in tear...it was exactly what I needed to

hear. Thank you sincerely. Thanks you..

Ruth

>

> Daily we wake up, and the challenge of getting out of bed begins.

Someone

> said that they take inventory to see if all the parts are working.

That truly

> says what we all experience.

>

> Some days the pain is more than we can handle-- and we wonder why

we keep on

> keeping on.

>

> This is what I want to address. Why do we keep on keeping on? What

happens

> when the Depression of chronic illness and chronic pain becomes

bigger than our

> spirit can handle?

>

> We do so because we have families that love us. We do so because

we want to

> live, and work, and see another rainbow. We do so because we love

listening

> to music, seeing a childs reaction at the first snowstorm, and

hearing their

> precious laughter at trying to catch a snowflake on their tongues

as it falls

> from heaven.

>

> The grief that comes from chronic illness is often times

unrelenting. At

> least it seems that way when we are buried in it. We question the

constant

> pain-- and want it to go away. It seems that with all the advances

of modern

> medicine that there has to be an answer. When that answer is not

forthcoming, we

> find ourself in despair, and we want someone to understand that we

aren't nuts,

> we aren't hypochondriacs, we aren't lazy, and we aren't trying to

get our fix

> on painmeds.

>

> With chronic illness, it is so much like losing a part of

yourself. You no

> longer have the energy to work, to get on your best face, to go

grocery

> shopping, or for a walk thru the mall. Best we stay away anyhow--

we don't have

> spending money to shop. so we find ourself sitting at home,

isolated, and in very

> real pain.

>

> " So great Tracie, you understand. I'm still in pain " -- is what you

want to

> scream! Fix it!

>

> If you don't have an MD that is willing to be serious with your

pain issues--

> find one that is. There is no sin in needing to be on pain

medications. If

> what you are using is not controlling your pain-- take someone with

you into

> the MD's-- and have a serious talk with him or her. There is no

reason why in

> todays medical setting, that our MD's aren't up on treating chronic

pain

> issues.

>

> To control pain requires two things of us. The courage to be real

with our

> MD's and family, and the ability to advocate for yourself. Yep, I

said it--

> fight for what you need.

>

> Assertiveness versus aggression. We've had people come online and

tell us

> that they ripped their MD's new assholes (ok, my words--but you get

the

> concept); and that they still weren't heard. They yell at the

receptionist--who is at

> best a messenger, that will be griped at by a moody, exhausted, MD

and

> back-office nurse. The office staff then assumes that the patient

has a hangup

> about pain and is a " whiner. "

>

> We know that's bullshxx, and we have a right to tell the MD that we

aren't

> exaggerating. if they still blow you off- find someone else.

Don't worry about

> the records-- get the test results from the hospital, labs, xrays,

and screw

> the office notes from Dr. X. His opinion, as well as the that of

the staff is

> one based on the programs from 60 minutes that say all workcomp

claims are

> bogus and people needing pain medications for any reason are

probably druggies.

>

> In a second post-- I will explain pain control techniques. This

post I truly

> want to tell all of you that yes, we have a serious illness. Your

MD doesn't

> understand it- has formed an opinion based on the messages that he

gets from

> his receptionist and nurse-- and that their opinions are more

important than

> your reality.

>

> So if the body language of the office staff is bad-- if you feel

like maybe

> the MD is getting the " she called again, want's more Vicodin, we

gave her 10

> tablets last month, and she ran out in 2 days. . (insert bored,

> discompassionate voice at 6pm on a Monday night- so 100 phone calls

have been answered and

> the hangover from the weekend play lasted until 2pm) and you've

got the

> scenario.

>

> Now- I'm not saying any of this is right. In fact, it is so very

wrong--

> that I want to scream also.

>

> So- sit down with your MD-- pull your chair in front of the door,

and don't

> move until you have made your point. You are paying the MD-- he

works for you.

>

>

> Don't yell and cuss out his staff. They are messengers. And they

hold the

> power in their hands as to whether you need this medication, or you

need a

> psychiatrist. (Personally, I like psychiatrists--they understand

the brain

> chemistry so much better, and know that if any part is out of sync-

it has to be

> rebalanced, so that pain CONTROL is maximized. ) The Anger is self-

destructive,

> and is also part of the Grief. But it has to be redirected so that

it works

> to your benefit.

>

> One of the best methods of pain control is meditation.

Weil, MD has

> a Body/Mind Connection Box that includes guided imagery and

meditation. You

> can get it online or at Costco. It's great! We have to learn to

relax every

> muscle and ligament in our bodies, and we have to learn to turn off

our

> brains-- and shut down some of that chatter that is constantly

reminding us how much

> we hurt.

>

> Bargaining is part of the cycle of Grief. How many of you find

that you

> spending your days frantically searching for a way to handle your

sarcoidosis

> issues? Do you find yourself holding your body tight, clenching

your jaw, are

> your shoulders connected directly to your ears-- your neck tensed

down into what

> feels like your abdomen? Do you find yourself fearing what the

future may

> hold? Are you scared that if you lose your job, your careers, your

livelyhoods,

> your husband or wife, that your world will crumble?

>

> If you aren't -- you're probably in Denial. However, to stay in

this place

> of fear is to lose what we do have. We have today. We have that

love and

> caring of our families and our kids. They want and need us. They

are scared too,

> and that's ok. Especially if you will talk with them-- and let

them know

> that even though you don't have a handle on your disease, that you

still love

> them- and need them. They are feeling desperate also, because they

too are

> powerless.

>

> This can destroy you, or it can build you up in a place that you've

never

> dreamed existed. Marla spoke about reframing and redetermining

what is " normal. "

> This is what begins Acceptance.

>

> The Five Stages of Grief: Denial, Depression, Anger, Bargaining,

and

> Acceptance are are issues we deal with. You will go from phase to

phase, and in and

> out of each one- many times over. That's ok.

>

> We have to give ourself the permission to work through these

issues, and we

> have to give our permission to talk candidly with our MD's-- and

let them know

> that we need them on our team. If you feel that your MD's and

their staff

> have decided that you are abusing your pain meds, or abusing

alcohol, or are

> depressed-- speak up!

>

> This disease comes with pain. It takes time to get all the kinks

worked out,

> and it may take Methadone or Oramorph or Fentanyl patches to

control your

> pain. This doesn't mean you're a junkie. It means you have

serious pain issues

> that IF you can get under control, you can be a more functional

human being.

>

> If you have chronic pain-- then it means you need chronic pain

control--

> CONSTANT pain control! If you take the medication only when you've

gotten to such

> a place that you can't handle the pain-- you've waited way to long -

-and that

> is not how pain control works.

>

> Long enough post for now-- I'll get the other articles on pain

management

> together-- there is many in the ARCHIVES. Please, be kind to

yourself and talk

> to your MD. You can handle this disease and the pain issues-- if

you can be

> part of your team with the help and coaching of your MD.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Tracie, Thanks for putting into words many of the things that i have been feeling. You put it perfectly. The neuro that i had insisted that i just had migraines ( i hate that word JUST) even though i had been diagnoesed with neurosarcoidosis by a Dr at s Hopkins Hospital. He delayed my treatment for a year because he wouldn't accept the diagnosis and i didn't know what to do. When you are sick and hurting you don't always thing clearly. However, you know how you feel and if you hurt or not and if you can't get out of bed in the morning or if you just are feeling lazy that day. NOONE with a chronic disease should ever have to fight for care but some times we do. Any way, thank you for what you are doing. Huggs tiodaat@... wrote: Daily we wake up, and the challenge of getting out of bed begins. Someone said that they take inventory to see if all the parts are working. That truly says what we all experience.Some days the pain is more than we can handle-- and we wonder why we keep on keeping on. This is what I want to address. Why do we keep on keeping on? What happens when the Depression of chronic illness and chronic pain becomes bigger than our spirit can handle?We do so because we have families that love us. We do so because we

want to live, and work, and see another rainbow. We do so because we love listening to music, seeing a childs reaction at the first snowstorm, and hearing their precious laughter at trying to catch a snowflake on their tongues as it falls from heaven. The grief that comes from chronic illness is often times unrelenting. At least it seems that way when we are buried in it. We question the constant pain-- and want it to go away. It seems that with all the advances of modern medicine that there has to be an answer. When that answer is not forthcoming, we find ourself in despair, and we want someone to understand that we aren't nuts, we aren't hypochondriacs, we aren't lazy, and we aren't trying to get our fix on painmeds.With chronic illness, it is so much like losing a part of yourself. You no longer have the energy to work, to get on your best face, to go grocery shopping, or for a walk thru the mall. Best we stay

away anyhow-- we don't have spending money to shop. so we find ourself sitting at home, isolated, and in very real pain. "So great Tracie, you understand. I'm still in pain"-- is what you want to scream! Fix it!If you don't have an MD that is willing to be serious with your pain issues-- find one that is. There is no sin in needing to be on pain medications. If what you are using is not controlling your pain-- take someone with you into the MD's-- and have a serious talk with him or her. There is no reason why in todays medical setting, that our MD's aren't up on treating chronic pain issues. To control pain requires two things of us. The courage to be real with our MD's and family, and the ability to advocate for yourself. Yep, I said it-- fight for what you need. Assertiveness versus aggression. We've had people come online and tell us that they ripped their MD's new

assholes (ok, my words--but you get the concept); and that they still weren't heard. They yell at the receptionist--who is at best a messenger, that will be griped at by a moody, exhausted, MD and back-office nurse. The office staff then assumes that the patient has a hangup about pain and is a "whiner."We know that's bullshxx, and we have a right to tell the MD that we aren't exaggerating. if they still blow you off- find someone else. Don't worry about the records-- get the test results from the hospital, labs, xrays, and screw the office notes from Dr. X. His opinion, as well as the that of the staff is one based on the programs from 60 minutes that say all workcomp claims are bogus and people needing pain medications for any reason are probably druggies.In a second post-- I will explain pain control techniques. This post I truly want to tell all of you that yes, we have a serious illness. Your MD doesn't

understand it- has formed an opinion based on the messages that he gets from his receptionist and nurse-- and that their opinions are more important than your reality. So if the body language of the office staff is bad-- if you feel like maybe the MD is getting the "she called again, want's more Vicodin, we gave her 10 tablets last month, and she ran out in 2 days. . (insert bored, discompassionate voice at 6pm on a Monday night- so 100 phone calls have been answered and the hangover from the weekend play lasted until 2pm) and you've got the scenario.Now- I'm not saying any of this is right. In fact, it is so very wrong-- that I want to scream also. So- sit down with your MD-- pull your chair in front of the door, and don't move until you have made your point. You are paying the MD-- he works for you. Don't yell and cuss out his staff. They are messengers. And they hold the power in their

hands as to whether you need this medication, or you need a psychiatrist. (Personally, I like psychiatrists--they understand the brain chemistry so much better, and know that if any part is out of sync- it has to be rebalanced, so that pain CONTROL is maximized. ) The Anger is self-destructive, and is also part of the Grief. But it has to be redirected so that it works to your benefit.One of the best methods of pain control is meditation. Weil, MD has a Body/Mind Connection Box that includes guided imagery and meditation. You can get it online or at Costco. It's great! We have to learn to relax every muscle and ligament in our bodies, and we have to learn to turn off our brains-- and shut down some of that chatter that is constantly reminding us how much we hurt. Bargaining is part of the cycle of Grief. How many of you find that you spending your days frantically searching for a way to

handle your sarcoidosis issues? Do you find yourself holding your body tight, clenching your jaw, are your shoulders connected directly to your ears-- your neck tensed down into what feels like your abdomen? Do you find yourself fearing what the future may hold? Are you scared that if you lose your job, your careers, your livelyhoods, your husband or wife, that your world will crumble?If you aren't -- you're probably in Denial. However, to stay in this place of fear is to lose what we do have. We have today. We have that love and caring of our families and our kids. They want and need us. They are scared too, and that's ok. Especially if you will talk with them-- and let them know that even though you don't have a handle on your disease, that you still love them- and need them. They are feeling desperate also, because they too are powerless. This can destroy you, or it can build you up in a

place that you've never dreamed existed. Marla spoke about reframing and redetermining what is "normal." This is what begins Acceptance. The Five Stages of Grief: Denial, Depression, Anger, Bargaining, and Acceptance are are issues we deal with. You will go from phase to phase, and in and out of each one- many times over. That's ok. We have to give ourself the permission to work through these issues, and we have to give our permission to talk candidly with our MD's-- and let them know that we need them on our team. If you feel that your MD's and their staff have decided that you are abusing your pain meds, or abusing alcohol, or are depressed-- speak up! This disease comes with pain. It takes time to get all the kinks worked out, and it may take Methadone or Oramorph or Fentanyl patches to control your pain. This doesn't mean you're a junkie. It means you have serious pain

issues that IF you can get under control, you can be a more functional human being. If you have chronic pain-- then it means you need chronic pain control-- CONSTANT pain control! If you take the medication only when you've gotten to such a place that you can't handle the pain-- you've waited way to long --and that is not how pain control works. Long enough post for now-- I'll get the other articles on pain management together-- there is many in the ARCHIVES. Please, be kind to yourself and talk to your MD. You can handle this disease and the pain issues-- if you can be part of your team with the help and coaching of your MD.Blessings,TracieNS Co-owner/moderator

We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list.

[Guest guest]

Tracie,

I feel your frustration,…and your pain. I only wish that I had

something more than words to offer. I the post on this site as I

can. Many cause my stomach to tighten as the pain, the despair, the

disappointment hit close to home. We live each day regardless of the

pain…often not for ourselves, but for our children and our families.

With our best, plastic happy face screwed in place, we muster every

ounce of strength to ensure the ones we care so much about don't end

up with the short end. Some days we succeed, others are nothing more

than an exercise in futility.

Then there are those times that I just want to reach out & throttle

the person across from me… " but you don't look sick " . I can see it on

their faces…he looks healthy, he isn't sick…he's either faking,

depressed or a hypochondriac. They know not the insane level of pain

that lives in my head day in & day out for months on end, or the long

nights spent on the bathroom floor, vomiting from the nausea, or the

despair from the realization that any hopes for developing a new

relationship with potential, significant other vanish with my fading

health. Not that I would ever wish my plight on anyone, but if they

could walk the walk just one day in my shoes…

I realize life could be much worse so I give thanks for the health I

have. No one knows what tomorrow holds. Maybe I'll get worse,

perhaps, hopefully, better. Only one thing is for certain…I'll never

know if I give up now. Stay well my friend.

Tony

[Guest guest]

No doubt your post hits home for many or most of us, having a dx seems

like the edn of the struggle when it finally is given by the umteenth

doctor, but often it is little more than words on a page. My Doctor's

response to my saying " it most likely is the Neurosarc " when asked why

I think I have all these 'mysterious symptoms' was (yeah this really

p*%^&*%%'s me off!) " I don't think we've ever talked about that. "

Really bonehead? Then just what the *(^*&%% have we been talking

about for the last 3 years!!!!???!!! Just to put the icing on the

cake we finished the conversation, (I call my talking to a stony faced

idiot a convefrsation only because I don't have another word I'm

willing to use in mixed company), with my docgod saying he would have

to " go with his (my neuro who had dx'd me about tenyears ago) IMPRESSION " .

So, you aren't alone, many doc's don't think the dx of NeuroSarc is a

real one, and therefore aren't willing to work to find a treatment

that helps with the pain or the million other problems we face. Alas

'modern medicine', sometimes I think we'ed all be better off with a

witchdoctor, atleast the dancing would be fun to watch!

Tracie is right on with her post about not being angry with the doc's

staff though, the only thing that has kept me going the last couple of

years is a good relationsship with his nurse who gets me what I need

in spite of her boss's stupidity, (is that the proper title within the

medical field?).

Stu

> Daily we wake up, and the challenge of getting out of bed

begins. Someone said that they take inventory to see if all the

parts are working. That truly says what we all experience.

>

> Some days the pain is more than we can handle-- and we wonder why we

keep on keeping on.

>

> This is what I want to address. Why do we keep on keeping on? What

happens when the Depression of chronic illness and chronic pain

becomes bigger than our spirit can handle?

>

> We do so because we have families that love us. We do so because we

want to live, and work, and see another rainbow. We do so because we

love listening to music, seeing a childs reaction at the first

snowstorm, and hearing their precious laughter at trying to catch a

snowflake on their tongues as it falls from heaven.

>

> The grief that comes from chronic illness is often times

unrelenting. At least it seems that way when we are buried in it. We

question the constant pain-- and want it to go away. It seems that

with all the advances of modern medicine that there has to be an

answer. When that answer is not forthcoming, we find ourself in

despair, and we want someone to understand that we aren't nuts, we

aren't hypochondriacs, we aren't lazy, and we aren't trying to get our

fix on painmeds.

>

> With chronic illness, it is so much like losing a part of yourself.

You no longer have the energy to work, to get on your best face, to

go grocery shopping, or for a walk thru the mall. Best we stay away

anyhow-- we don't have spending money to shop. so we find ourself

sitting at home, isolated, and in very real pain.

>

> " So great Tracie, you understand. I'm still in pain " -- is what you

want to scream! Fix it!

>

> If you don't have an MD that is willing to be serious with your pain

issues-- find one that is. There is no sin in needing to be on pain

medications. If what you are using is not controlling your pain--

take someone with you into the MD's-- and have a serious talk with him

or her. There is no reason why in todays medical setting, that our

MD's aren't up on treating chronic pain issues.

>

> To control pain requires two things of us. The courage to be real

with our MD's and family, and the ability to advocate for yourself.

Yep, I said it-- fight for what you need.

>

> Assertiveness versus aggression. We've had people come online and

tell us that they ripped their MD's new assholes (ok, my words--but

you get the concept); and that they still weren't heard. They yell at

the receptionist--who is at best a messenger, that will be griped at

by a moody, exhausted, MD and back-office nurse. The office staff

then assumes that the patient has a hangup about pain and is a " whiner. "

>

> We know that's bullshxx, and we have a right to tell the MD that we

aren't exaggerating. if they still blow you off- find someone else.

Don't worry about the records-- get the test results from the

hospital, labs, xrays, and screw the office notes from Dr. X. His

opinion, as well as the that of the staff is one based on the programs

from 60 minutes that say all workcomp claims are bogus and people

needing pain medications for any reason are probably druggies.

>

> In a second post-- I will explain pain control techniques. This

post I truly want to tell all of you that yes, we have a serious

illness. Your MD doesn't understand it- has formed an opinion based

on the messages that he gets from his receptionist and nurse-- and

that their opinions are more important than your reality.

>

> So if the body language of the office staff is bad-- if you feel

like maybe the MD is getting the " she called again, want's more

Vicodin, we gave her 10 tablets last month, and she ran out in 2 days.

.. (insert bored, discompassionate voice at 6pm on a Monday night- so

100 phone calls have been answered and the hangover from the weekend

play lasted until 2pm) and you've got the scenario.

>

> Now- I'm not saying any of this is right. In fact, it is so very

wrong-- that I want to scream also.

>

> So- sit down with your MD-- pull your chair in front of the door,

and don't move until you have made your point. You are paying the

MD-- he works for you.

>

> Don't yell and cuss out his staff. They are messengers. And they

hold the power in their hands as to whether you need this medication,

or you need a psychiatrist. (Personally, I like psychiatrists--they

understand the brain chemistry so much better, and know that if any

part is out of sync- it has to be rebalanced, so that pain CONTROL is

maximized. ) The Anger is self-destructive, and is also part of the

Grief. But it has to be redirected so that it works to your benefit.

>

> One of the best methods of pain control is meditation.

Weil, MD has a Body/Mind Connection Box that includes guided imagery

and meditation. You can get it online or at Costco. It's great! We

have to learn to relax every muscle and ligament in our bodies, and we

have to learn to turn off our brains-- and shut down some of that

chatter that is constantly reminding us how much we hurt.

>

> Bargaining is part of the cycle of Grief. How many of you find that

you spending your days frantically searching for a way to handle your

sarcoidosis issues? Do you find yourself holding your body tight,

clenching your jaw, are your shoulders connected directly to your

ears-- your neck tensed down into what feels like your abdomen? Do

you find yourself fearing what the future may hold? Are you scared

that if you lose your job, your careers, your livelyhoods, your

husband or wife, that your world will crumble?

>

> If you aren't -- you're probably in Denial. However, to stay in

this place of fear is to lose what we do have. We have today. We

have that love and caring of our families and our kids. They want and

need us. They are scared too, and that's ok. Especially if you will

talk with them-- and let them know that even though you don't have a

handle on your disease, that you still love them- and need them. They

are feeling desperate also, because they too are powerless.

>

> This can destroy you, or it can build you up in a place that you've

never dreamed existed. Marla spoke about reframing and redetermining

what is " normal. " This is what begins Acceptance.

>

> The Five Stages of Grief: Denial, Depression, Anger, Bargaining,

and Acceptance are are issues we deal with. You will go from phase to

phase, and in and out of each one- many times over. That's ok.

>

> We have to give ourself the permission to work through these issues,

and we have to give our permission to talk candidly with our MD's--

and let them know that we need them on our team. If you feel that

your MD's and their staff have decided that you are abusing your pain

meds, or abusing alcohol, or are depressed-- speak up!

>

> This disease comes with pain. It takes time to get all the kinks

worked out, and it may take Methadone or Oramorph or Fentanyl patches

to control your pain. This doesn't mean you're a junkie. It means

you have serious pain issues that IF you can get under control, you

can be a more functional human being.

>

> If you have chronic pain-- then it means you need chronic pain

control-- CONSTANT pain control! If you take the medication only when

you've gotten to such a place that you can't handle the pain-- you've

waited way to long --and that is not how pain control works.

>

> Long enough post for now-- I'll get the other articles on pain

management together-- there is many in the ARCHIVES. Please, be kind

to yourself and talk to your MD. You can handle this disease and the

pain issues-- if you can be part of your team with the help and

coaching of your MD.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

>

>

>

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

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures list.

>

[Guest guest]

stu, No doubt you are right. I am not the only one who has had the doctor that won't listen. That really is sad and scary. My hope is that i can help one person not have to go through what we did. I am not angry at the Dr. Anger and hate are a waste of my energy, and lord knows we can use all of the extra energy that we can get. Huggs lizzyandstu wrote: No doubt your post hits home for many or most of us, having a dx seemslike the edn of the struggle when it finally is given by the umteenthdoctor, but often it is little more than words on a page. My Doctor'sresponse to my saying "it most likely is the Neurosarc" when asked whyI think I have all these 'mysterious symptoms' was (yeah this reallyp*%^ & *%%'s me off!) "I don't think we've ever talked about that." Really bonehead? Then just what the *(^* & %% have we been talkingabout for the last 3 years!!!!???!!! Just to put the icing on thecake we finished the conversation, (I call my talking to a stony facedidiot a convefrsation only because I don't have another word I'mwilling to use in mixed company), with my docgod saying he would haveto "go with his (my neuro who had dx'd me about tenyears ago) IMPRESSION".So, you aren't alone, many doc's don't think the dx of NeuroSarc is areal one, and

therefore aren't willing to work to find a treatmentthat helps with the pain or the million other problems we face. Alas'modern medicine', sometimes I think we'ed all be better off with awitchdoctor, atleast the dancing would be fun to watch!Tracie is right on with her post about not being angry with the doc'sstaff though, the only thing that has kept me going the last couple ofyears is a good relationsship with his nurse who gets me what I needin spite of her boss's stupidity, (is that the proper title within themedical field?).Stu> Daily we wake up, and the challenge of getting out of bedbegins. Someone said that they take inventory to see if all theparts are working. That truly says what we all experience.> > Some days the pain is more than we can handle-- and we wonder why wekeep on keeping on. > > This is what I want to address. Why do we keep on keeping

on? Whathappens when the Depression of chronic illness and chronic painbecomes bigger than our spirit can handle?> > We do so because we have families that love us. We do so because wewant to live, and work, and see another rainbow. We do so because welove listening to music, seeing a childs reaction at the firstsnowstorm, and hearing their precious laughter at trying to catch asnowflake on their tongues as it falls from heaven. > > The grief that comes from chronic illness is often timesunrelenting. At least it seems that way when we are buried in it. Wequestion the constant pain-- and want it to go away. It seems thatwith all the advances of modern medicine that there has to be ananswer. When that answer is not forthcoming, we find ourself indespair, and we want someone to understand that we aren't nuts, wearen't hypochondriacs, we aren't lazy, and we aren't trying to get ourfix on

painmeds.> > With chronic illness, it is so much like losing a part of yourself.You no longer have the energy to work, to get on your best face, togo grocery shopping, or for a walk thru the mall. Best we stay awayanyhow-- we don't have spending money to shop. so we find ourselfsitting at home, isolated, and in very real pain. > > "So great Tracie, you understand. I'm still in pain"-- is what youwant to scream! Fix it!> > If you don't have an MD that is willing to be serious with your painissues-- find one that is. There is no sin in needing to be on painmedications. If what you are using is not controlling your pain--take someone with you into the MD's-- and have a serious talk with himor her. There is no reason why in todays medical setting, that ourMD's aren't up on treating chronic pain issues. > > To control pain requires two things of us. The courage to be realwith our

MD's and family, and the ability to advocate for yourself.Yep, I said it-- fight for what you need. > > Assertiveness versus aggression. We've had people come online andtell us that they ripped their MD's new assholes (ok, my words--butyou get the concept); and that they still weren't heard. They yell atthe receptionist--who is at best a messenger, that will be griped atby a moody, exhausted, MD and back-office nurse. The office staffthen assumes that the patient has a hangup about pain and is a "whiner."> > We know that's bullshxx, and we have a right to tell the MD that wearen't exaggerating. if they still blow you off- find someone else. Don't worry about the records-- get the test results from thehospital, labs, xrays, and screw the office notes from Dr. X. Hisopinion, as well as the that of the staff is one based on the programsfrom 60 minutes that say all workcomp claims are bogus and

peopleneeding pain medications for any reason are probably druggies.> > In a second post-- I will explain pain control techniques. Thispost I truly want to tell all of you that yes, we have a seriousillness. Your MD doesn't understand it- has formed an opinion basedon the messages that he gets from his receptionist and nurse-- andthat their opinions are more important than your reality. > > So if the body language of the office staff is bad-- if you feellike maybe the MD is getting the "she called again, want's moreVicodin, we gave her 10 tablets last month, and she ran out in 2 days.. (insert bored, discompassionate voice at 6pm on a Monday night- so100 phone calls have been answered and the hangover from the weekendplay lasted until 2pm) and you've got the scenario.> > Now- I'm not saying any of this is right. In fact, it is so verywrong-- that I want to scream also. > >

So- sit down with your MD-- pull your chair in front of the door,and don't move until you have made your point. You are paying theMD-- he works for you. > > Don't yell and cuss out his staff. They are messengers. And theyhold the power in their hands as to whether you need this medication,or you need a psychiatrist. (Personally, I like psychiatrists--theyunderstand the brain chemistry so much better, and know that if anypart is out of sync- it has to be rebalanced, so that pain CONTROL ismaximized. ) The Anger is self-destructive, and is also part of theGrief. But it has to be redirected so that it works to your benefit.> > One of the best methods of pain control is meditation. Weil, MD has a Body/Mind Connection Box that includes guided imageryand meditation. You can get it online or at Costco. It's great! Wehave to learn to relax every muscle and ligament in our bodies, and wehave to

learn to turn off our brains-- and shut down some of thatchatter that is constantly reminding us how much we hurt. > > Bargaining is part of the cycle of Grief. How many of you find thatyou spending your days frantically searching for a way to handle yoursarcoidosis issues? Do you find yourself holding your body tight,clenching your jaw, are your shoulders connected directly to yourears-- your neck tensed down into what feels like your abdomen? Doyou find yourself fearing what the future may hold? Are you scaredthat if you lose your job, your careers, your livelyhoods, yourhusband or wife, that your world will crumble?> > If you aren't -- you're probably in Denial. However, to stay inthis place of fear is to lose what we do have. We have today. Wehave that love and caring of our families and our kids. They want andneed us. They are scared too, and that's ok. Especially if you willtalk with them--

and let them know that even though you don't have ahandle on your disease, that you still love them- and need them. Theyare feeling desperate also, because they too are powerless. > > This can destroy you, or it can build you up in a place that you'venever dreamed existed. Marla spoke about reframing and redeterminingwhat is "normal." This is what begins Acceptance. > > The Five Stages of Grief: Denial, Depression, Anger, Bargaining,and Acceptance are are issues we deal with. You will go from phase tophase, and in and out of each one- many times over. That's ok. > > We have to give ourself the permission to work through these issues,and we have to give our permission to talk candidly with our MD's--and let them know that we need them on our team. If you feel thatyour MD's and their staff have decided that you are abusing your painmeds, or abusing alcohol, or are depressed-- speak up! >

> This disease comes with pain. It takes time to get all the kinksworked out, and it may take Methadone or Oramorph or Fentanyl patchesto control your pain. This doesn't mean you're a junkie. It meansyou have serious pain issues that IF you can get under control, youcan be a more functional human being. > > If you have chronic pain-- then it means you need chronic paincontrol-- CONSTANT pain control! If you take the medication only whenyou've gotten to such a place that you can't handle the pain-- you'vewaited way to long --and that is not how pain control works. > > Long enough post for now-- I'll get the other articles on painmanagement together-- there is many in the ARCHIVES. Please, be kindto yourself and talk to your MD. You can handle this disease and thepain issues-- if you can be part of your team with the help andcoaching of your MD.> > Blessings,> Tracie>

NS Co-owner/moderator > > > > > ---------------------------------> We won't tell. Get more on shows you hate to love> (and love to hate): Yahoo! TV's Guilty Pleasures list.>

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

[Guest guest]

I found a dr at an urgent care that I've been going to that actually

seems to understand about pain and the need for pain medications. I

wish I could keep him as a dr, but oh well such is this life. I saw

him just a few days ago and we were talking about people not

understanding pain. I started tapping my finger on the table, I said

to him that I have done that in the past with others and within

seconds they are asking me to stop. He said they can't stand it but

yet they expect you to live everyday with that in your head (my pain

is face and head). Its not easy to get people who aren't in pain to

understand, but every once in a while we get lucky.

I was a nurse and before I got NS, I was so cynical.......thinking

why do these people come in claiming to be in pain. My eyes were

open when I ended up on the other side of the fence. It also makes

it a bit harder for me to push for my own needs as I understand why

dr's think the way they do.

Forgive me if I ramble, I don't sleep much and my brain really gets

mushy.

Kimber

> Daily we wake up, and the challenge of getting out of

bed begins. Someone said that they take inventory to see if all

the parts are working. That truly says what we all experience.

>

> Some days the pain is more than we can handle-- and we wonder why

we keep on keeping on.

>

> This is what I want to address. Why do we keep on keeping on?

What happens when the Depression of chronic illness and chronic pain

becomes bigger than our spirit can handle?

>

> We do so because we have families that love us. We do so because

we want to live, and work, and see another rainbow. We do so

because we love listening to music, seeing a childs reaction at the

first snowstorm, and hearing their precious laughter at trying to

catch a snowflake on their tongues as it falls from heaven.

>

> The grief that comes from chronic illness is often times

unrelenting. At least it seems that way when we are buried in it.

We question the constant pain-- and want it to go away. It seems

that with all the advances of modern medicine that there has to be

an answer. When that answer is not forthcoming, we find ourself in

despair, and we want someone to understand that we aren't nuts, we

aren't hypochondriacs, we aren't lazy, and we aren't trying to get

our fix on painmeds.

>

> With chronic illness, it is so much like losing a part of

yourself. You no longer have the energy to work, to get on your

best face, to go grocery shopping, or for a walk thru the mall.

Best we stay away anyhow-- we don't have spending money to shop. so

we find ourself sitting at home, isolated, and in very real pain.

>

> " So great Tracie, you understand. I'm still in pain " -- is what

you want to scream! Fix it!

>

> If you don't have an MD that is willing to be serious with your

pain issues-- find one that is. There is no sin in needing to be on

pain medications. If what you are using is not controlling your

pain-- take someone with you into the MD's-- and have a serious talk

with him or her. There is no reason why in todays medical setting,

that our MD's aren't up on treating chronic pain issues.

>

> To control pain requires two things of us. The courage to be real

with our MD's and family, and the ability to advocate for yourself.

Yep, I said it-- fight for what you need.

>

> Assertiveness versus aggression. We've had people come online and

tell us that they ripped their MD's new assholes (ok, my words--but

you get the concept); and that they still weren't heard. They yell

at the receptionist--who is at best a messenger, that will be griped

at by a moody, exhausted, MD and back-office nurse. The office

staff then assumes that the patient has a hangup about pain and is

a " whiner. "

>

> We know that's bullshxx, and we have a right to tell the MD that

we aren't exaggerating. if they still blow you off- find someone

else. Don't worry about the records-- get the test results from the

hospital, labs, xrays, and screw the office notes from Dr. X. His

opinion, as well as the that of the staff is one based on the

programs from 60 minutes that say all workcomp claims are bogus and

people needing pain medications for any reason are probably druggies.

>

> In a second post-- I will explain pain control techniques. This

post I truly want to tell all of you that yes, we have a serious

illness. Your MD doesn't understand it- has formed an opinion based

on the messages that he gets from his receptionist and nurse-- and

that their opinions are more important than your reality.

>

> So if the body language of the office staff is bad-- if you feel

like maybe the MD is getting the " she called again, want's more

Vicodin, we gave her 10 tablets last month, and she ran out in 2

days. . (insert bored, discompassionate voice at 6pm on a Monday

night- so 100 phone calls have been answered and the hangover from

the weekend play lasted until 2pm) and you've got the scenario.

>

> Now- I'm not saying any of this is right. In fact, it is so very

wrong-- that I want to scream also.

>

> So- sit down with your MD-- pull your chair in front of the door,

and don't move until you have made your point. You are paying the

MD-- he works for you.

>

> Don't yell and cuss out his staff. They are messengers. And they

hold the power in their hands as to whether you need this

medication, or you need a psychiatrist. (Personally, I like

psychiatrists--they understand the brain chemistry so much better,

and know that if any part is out of sync- it has to be rebalanced,

so that pain CONTROL is maximized. ) The Anger is self-destructive,

and is also part of the Grief. But it has to be redirected so that

it works to your benefit.

>

> One of the best methods of pain control is meditation.

Weil, MD has a Body/Mind Connection Box that includes guided imagery

and meditation. You can get it online or at Costco. It's great!

We have to learn to relax every muscle and ligament in our bodies,

and we have to learn to turn off our brains-- and shut down some of

that chatter that is constantly reminding us how much we hurt.

>

> Bargaining is part of the cycle of Grief. How many of you find

that you spending your days frantically searching for a way to

handle your sarcoidosis issues? Do you find yourself holding your

body tight, clenching your jaw, are your shoulders connected

directly to your ears-- your neck tensed down into what feels like

your abdomen? Do you find yourself fearing what the future may

hold? Are you scared that if you lose your job, your careers, your

livelyhoods, your husband or wife, that your world will crumble?

>

> If you aren't -- you're probably in Denial. However, to stay in

this place of fear is to lose what we do have. We have today. We

have that love and caring of our families and our kids. They want

and need us. They are scared too, and that's ok. Especially if you

will talk with them-- and let them know that even though you don't

have a handle on your disease, that you still love them- and need

them. They are feeling desperate also, because they too are

powerless.

>

> This can destroy you, or it can build you up in a place that

you've never dreamed existed. Marla spoke about reframing and

redetermining what is " normal. " This is what begins Acceptance.

>

> The Five Stages of Grief: Denial, Depression, Anger, Bargaining,

and Acceptance are are issues we deal with. You will go from phase

to phase, and in and out of each one- many times over. That's ok.

>

> We have to give ourself the permission to work through these

issues, and we have to give our permission to talk candidly with our

MD's-- and let them know that we need them on our team. If you feel

that your MD's and their staff have decided that you are abusing

your pain meds, or abusing alcohol, or are depressed-- speak up!

>

> This disease comes with pain. It takes time to get all the kinks

worked out, and it may take Methadone or Oramorph or Fentanyl

patches to control your pain. This doesn't mean you're a junkie.

It means you have serious pain issues that IF you can get under

control, you can be a more functional human being.

>

> If you have chronic pain-- then it means you need chronic pain

control-- CONSTANT pain control! If you take the medication only

when you've gotten to such a place that you can't handle the pain--

you've waited way to long --and that is not how pain control works.

>

> Long enough post for now-- I'll get the other articles on pain

management together-- there is many in the ARCHIVES. Please, be

kind to yourself and talk to your MD. You can handle this disease

and the pain issues-- if you can be part of your team with the help

and coaching of your MD.

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

>

>

>

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

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures list.

>

[Guest guest]

Damn, you made me cry. I don't like starting because it can open the

floodgates, but all you say is so true. When I recently questioned my

MD about whether post-traumatic stress disorder could pertain to

someone like me he said, " Of course! It's not everyone who has to take

stock of their body in the morning to see what is working and what is

not. "

My last big flareup not only caused pain but left me totally helpless,

and stuck in bed because it hit the balance mechanisim in my ear.

Imagine being on the carnival ride called a tilt-a-whirl and have it

go 1,000 mph, non-stop - hour after hour - day after day. I begged my

doctor to let me die. The fear of it returning still wakes me almost

every night.

What keeps me going? What keeps me smiling in spite of it all? You

named it, my family. But it's hard to make my children understand.

They are angry many times that mom isn't " normal. " And when I feel OK,

I feel great! Not like I used to (still can't bike and hike, all that

good stuff) but it feels terrific not to hurt.

As for pain meds I don't like how doped up they make me feel. That's

why I try to avoid them.

Tracie, it's good to hear from you again. Feeling OK?

-

[Guest guest]

Tracie, You said it all. Thank you. Its nice to know that we are not alone out there with our feelings. I was at a point that my pain was so bad that I just did not want to live anymore and I felt that my family would be so much better off without me there making life so difficult for them. My medicall bills had taken every single cent of our money and then some. We had to sell our house because there was no longer money to pay the mortage. The kids smiled but deep down I knew that there was a sadness about them which I felt that I had caused. Luckily at that time I had a wonderful Dr. who noticed I seemed depressed and talked to me about it. I broke down and told her my plans. She called my husband and wouldn't let me leave until she felt that I was in a better place and with a prescription for an antidepressant. That med along with my husband telling me that they would rather struggle a little bit and

have me around helped me so much. I no longer think that they would be better off without me anymore so when the pain gets so bad I think of them. If they could give up so much in thier lives for me then I can get through another painful day one day at a time for them. Thanks for listening, Tammytiodaat@... wrote: Daily we wake up, and the challenge of getting out of bed begins. Someone

said that they take inventory to see if all the parts are working. That truly says what we all experience.Some days the pain is more than we can handle-- and we wonder why we keep on keeping on. This is what I want to address. Why do we keep on keeping on? What happens when the Depression of chronic illness and chronic pain becomes bigger than our spirit can handle?We do so because we have families that love us. We do so because we want to live, and work, and see another rainbow. We do so because we love listening to music, seeing a childs reaction at the first snowstorm, and hearing their precious laughter at trying to catch a snowflake on their tongues as it falls from heaven. The grief that comes from chronic illness is often times unrelenting. At least it seems that way when we are buried in it. We question the constant pain-- and want it to go away. It seems that with all the advances of

modern medicine that there has to be an answer. When that answer is not forthcoming, we find ourself in despair, and we want someone to understand that we aren't nuts, we aren't hypochondriacs, we aren't lazy, and we aren't trying to get our fix on painmeds.With chronic illness, it is so much like losing a part of yourself. You no longer have the energy to work, to get on your best face, to go grocery shopping, or for a walk thru the mall. Best we stay away anyhow-- we don't have spending money to shop. so we find ourself sitting at home, isolated, and in very real pain. "So great Tracie, you understand. I'm still in pain"-- is what you want to scream! Fix it!If you don't have an MD that is willing to be serious with your pain issues-- find one that is. There is no sin in needing to be on pain medications. If what you are using is not controlling your pain-- take someone with you into the MD's--

and have a serious talk with him or her. There is no reason why in todays medical setting, that our MD's aren't up on treating chronic pain issues. To control pain requires two things of us. The courage to be real with our MD's and family, and the ability to advocate for yourself. Yep, I said it-- fight for what you need. Assertiveness versus aggression. We've had people come online and tell us that they ripped their MD's new assholes (ok, my words--but you get the concept); and that they still weren't heard. They yell at the receptionist--who is at best a messenger, that will be griped at by a moody, exhausted, MD and back-office nurse. The office staff then assumes that the patient has a hangup about pain and is a "whiner."We know that's bullshxx, and we have a right to tell the MD that we aren't exaggerating. if they still blow you off- find someone else. Don't worry about the records--

get the test results from the hospital, labs, xrays, and screw the office notes from Dr. X. His opinion, as well as the that of the staff is one based on the programs from 60 minutes that say all workcomp claims are bogus and people needing pain medications for any reason are probably druggies.In a second post-- I will explain pain control techniques. This post I truly want to tell all of you that yes, we have a serious illness. Your MD doesn't understand it- has formed an opinion based on the messages that he gets from his receptionist and nurse-- and that their opinions are more important than your reality. So if the body language of the office staff is bad-- if you feel like maybe the MD is getting the "she called again, want's more Vicodin, we gave her 10 tablets last month, and she ran out in 2 days. . (insert bored, discompassionate voice at 6pm on a Monday night- so 100 phone calls have been answered and the hangover

from the weekend play lasted until 2pm) and you've got the scenario.Now- I'm not saying any of this is right. In fact, it is so very wrong-- that I want to scream also. So- sit down with your MD-- pull your chair in front of the door, and don't move until you have made your point. You are paying the MD-- he works for you. Don't yell and cuss out his staff. They are messengers. And they hold the power in their hands as to whether you need this medication, or you need a psychiatrist. (Personally, I like psychiatrists--they understand the brain chemistry so much better, and know that if any part is out of sync- it has to be rebalanced, so that pain CONTROL is maximized. ) The Anger is self-destructive, and is also part of the Grief. But it has to be redirected so that it works to your benefit.One of the best methods of pain control is meditation. Weil, MD has a

Body/Mind Connection Box that includes guided imagery and meditation. You can get it online or at Costco. It's great! We have to learn to relax every muscle and ligament in our bodies, and we have to learn to turn off our brains-- and shut down some of that chatter that is constantly reminding us how much we hurt. Bargaining is part of the cycle of Grief. How many of you find that you spending your days frantically searching for a way to handle your sarcoidosis issues? Do you find yourself holding your body tight, clenching your jaw, are your shoulders connected directly to your ears-- your neck tensed down into what feels like your abdomen? Do you find yourself fearing what the future may hold? Are you scared that if you lose your job, your careers, your livelyhoods, your husband or wife, that your world will crumble?If you aren't -- you're probably in Denial. However, to stay in this place of fear is

to lose what we do have. We have today. We have that love and caring of our families and our kids. They want and need us. They are scared too, and that's ok. Especially if you will talk with them-- and let them know that even though you don't have a handle on your disease, that you still love them- and need them. They are feeling desperate also, because they too are powerless. This can destroy you, or it can build you up in a place that you've never dreamed existed. Marla spoke about reframing and redetermining what is "normal." This is what begins Acceptance. The Five Stages of Grief: Denial, Depression, Anger, Bargaining, and Acceptance are are issues we deal with. You will go from phase to phase, and in and out of each one- many times over. That's ok. We have to give ourself the permission to work through these issues, and we have to give our permission to talk

candidly with our MD's-- and let them know that we need them on our team. If you feel that your MD's and their staff have decided that you are abusing your pain meds, or abusing alcohol, or are depressed-- speak up! This disease comes with pain. It takes time to get all the kinks worked out, and it may take Methadone or Oramorph or Fentanyl patches to control your pain. This doesn't mean you're a junkie. It means you have serious pain issues that IF you can get under control, you can be a more functional human being. If you have chronic pain-- then it means you need chronic pain control-- CONSTANT pain control! If you take the medication only when you've gotten to such a place that you can't handle the pain-- you've waited way to long --and that is not how pain control works. Long enough post for now-- I'll get the other articles on pain management together-- there is many in the ARCHIVES.

Please, be kind to yourself and talk to your MD. You can handle this disease and the pain issues-- if you can be part of your team with the help and coaching of your MD.Blessings,TracieNS Co-owner/moderator

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