Re: Need a Listening Ear...

[Guest guest]



Joan, My heart and prayers go out to you, but Hang in there Girl!! Even if you can't do for others the way you use to, you are still there, and there world would be crushed without you!! We might and I say might(because nobody knows) get some relief but the grief to those behind would be overwhelming. I think we all feel this way from time to time. And I agree that the pain is awful in the morning, I too do not want to put my feet on the floor, as that is so painful. My toes can sometimes hurt more then any other part of my body!! Amazing isn't it.

Yes, it would of been nice to have been diagnosed with a disease that had a cure, and hopefully some day there will be one. But for now, I just keep remembering what a doctor told me, as she was describing this disease to my husband. It's like having cancer without the primary tumor, (as our granulomas turn up anywhere and everywhere) and with no cure!!

Joan I hope you can feel my positive thoughts coming your way, I hope you have brighter days.

Don't ever feel bad about venting on us, we all have to have somewhere to go, and just by putting it on paper I feel better. I know a lotof do this, have you tried Journaling, I do it, and it helps me some days. I have three around the house, so I can just pick one up and jot my thoughts down whenever I need to! Hang in there!!!

Thinking of you,

Marla

Need a Listening Ear...

Dear Sarcoidonian Friends, Warning: If you are already depressed, please do not read this ...

I've been having unusually high pain days recently ... I think I'm in the middle of a Pity Party for Myself ... and No One to invite ... I apologize if you are reading this ... that means you are on the guest list ...

I dread going to sleep because I know the pain I will feel in the morning (the morning is worst for me). I have stopped taking the complete dosage of neurontin the neuro suggests to continue increasing ... I have to make a decision on what I can tolerate most that day ... nerve pain or the nausea the neurontin causes. Sometimes, when I can't stop the coughing, and have absolutely zero energy to even get out of bed, and not wanting my ankles to touch the floor because of the pain, not wanting to move my arms, and NO ONE, except this group, understanding what that feels like, and having my doctors not knowing what to do because some medical tests do not always portray what I am feeling, and my husband and family seeing me moving about some days (not realizing I've dosed myself with pain meds just to do so) ... well, some days, like the last few weeks, are very scary and depressing. I am so tired of not knowing how I will feel from day-to-day.

I am scared because I hate taking all these different medications ... I am afraid to take them, and I am afraid to not take them. I am afraid of relying on pain meds ... I need to take more than prescribed ... just to get through the day and stop the f---ing pain. I hate being scared because my bottle is empty before I can renew it. The codeine in the Lortab keeps the coughing down, too. When I am out of my pills, I cough terribly. The doctors' prescribe me 1 Lortab 3x a day ... I wait for 1 to kick in ... I know that I need to go downstairs and shower and try to pretend I am a normal human being ... 1 does not work ... I take 1 more. That is what works. Then, by late afternoon, it's wearing off ... so take 1 more, and when that doesn't work 1 more (4/day). The "fake energy" also helps since I normally have none. But try telling a doctor that!!! ... they tell you that you are going to destroy your liver. Well ... according to my pulm. doc, he says, we assume the liver is full of granulomas anyway ... so, what? ... all the other meds combined aren't going to destroy the liver? ... and they want you to take something like Ultracet ... what a joke!...that doesn't touch the pain. As many of you have posted, most doctors do not realize the pain levels we feel ... I wonder if they would take 4 instead of 3 pain pills if they felt what we feel.

Can someone please explain what is happening to my body?...my ACE levels were normal the 2x they were tested. My EMG's show chronic radiculopathy and peripheral neuropathy. A cervical and lower spine reveal several herniated disks in neck; 2 "slightly bulging" disks in lower spine and nerve pressing on L4-L5. Disk is not bad enough for surgery. After 6 steroid epidurals in 2 years, Neuro indicated the nerve is inflamed and touching the disk (vs. the disk inflamed and pressing on nerve) -- which is what I having been thinking for a while; hence, epidurals were unnecessary and did nothing.

I am having a thoracic MRI tomorrow ... no lesions found on previous MRI's. (Neuro has requested thoracic MRI only due to urological problems ... losing control of bladder ... may be caused from meds?) Neuro continues to increase neurontin ... started out on 300 mg's/day in April ... and increased now to 2400 mg's/day; indicated we may increase to 3600 mg's. I cannot tolerate the 1800 mg's/day I've been taking ... I get too nauseous. Although I take a minimum of 900 mg's/day now just so my body is not jolted from the reduction of the neurontin and I don’t have a seizure, I just can't tolerate the higher doses.

Although I and my family doctor know that sarcoid can cause neurological problems, I now do not believe my neuro thinks I have neurosarcoidosis due to lack of spine lesions and normal ACE levels. I know he at least acknowledges the fact that I have inflammation in the nerves.

I was diagnosed with pulmonary sarc in 2000. My last chest x-ray last December showed no active disease. I thought I was done with the symptoms...I was so very wrong. My pulm. Doc, who I like very much, made 2 contradictory statements ... due to the granulomas in my lungs disappearing, he said, “you are curedâ€. On another occasion, “well, Sarcoid never really goes awayâ€. When he heard I was having neurological issues, he stated that he still needed to continue to see me.

I wish my family doctor, who seems to know most about the multi-systemic part of the disease, would be the only one to treat me. However, he needs to rely on specialists for each different area. I haven’t seen my dermatologist since 1997 ... I had 4 skin lesion biopsies prior to be diagnosed with Sarcoidosis ... the results indicated possible lichen planus or lichenoid dermatitis, or vasculitis. We all know that vasculitis is another systemic part of this disease. During the period when my lungs were bad, I had the “shin†granulomas. They were not biopsied at that time as diagnosis was confirmed via a mediastinoscopy (lung biopsy). I have, again since 1989, had very "strange" lesions on my body -- feet, legs, arms, chest, buttocks ... I have enclosed some photos. These are not the same kind of "granulomas" I had on my shin. These are much different as you can see. Does anyone else have these type of lesions?...it is so painful to walk with the nerve pain as it is ... but when I have edema in my legs, it stretches my skin so badly, that walking is just about impossible with these type of lesions.

My depression is really bad now ... I just received in the mail Long-Term Disability forms to complete ... I pick them up, start to complete them, then cry and have to put them down. I also received a benefits package change. I cannot bring myself to read it yet. I did see one page which indicated I will lose my life insurance (my husband was recently in a car accident and is also on disability ... he will lose his benefits soon, too). I am trying to get a hardship withdraw from my savings plan as I am struggling to pay my bills and unexpected medical/prescription bills – I am not even sure they allow a withdraw if you are on disability ... that makes no sense at all ... when you need your own money the most, you can’t get it. My bills are getting paid late – when I have to choose to either pay for prescriptions/doctor co-pays, etc., ... well, pretty logical which one wins out. My memory is starting to get wacky, too (even when not taking any narcotic pain meds... sometimes I forget bills are due. Due to “special requirements†regarding my job, I cannot have credit issues.

My boss does not want to replace me. He said he has been spoiled with me. Although that should make me happy, I get even more depressed because I can no longer maintain the performance level I once did when healthy. I have, for many years now, been rated/ranked in the top 10% of a 5000-employee workforce. My doctor commented on my last visit that he is glad to see that I am finally realizing I have limitations. I hate having limitations.

I want to go back to work and be a “normal†person again. I am afraid, however – my job is stressful (the kind of stress my “old†self used to thrive on) ... but not anymore ... we all know what stress does to our immune system and body.

I do not want to lose benefits and depend on insurance companies and SS deciding if they will provide me with the benefits I’ve been paying for since I was 18. Many of you have written in your posts that SS does not recognize Sarcoidosis as a debilitating disease. Although I never want another human being to get this ugly, not-understood, disease ever again, I believe if the individuals making these decisions lived for one day with the way we feel, they might get it. If I were healthy, I would not be able to comprehend what this pain felt like, nor would I be able to comprehend what it was like to have to lay down merely because getting dressed drained the little energy I had just to get dressed.

My depression is getting so bad that sometimes when I lay in bed, I apologize to God, but ask him if I cannot get better, to just let it all end. I am beginning to have the thoughts that many of you have had ... fortunately, I have too much to organize and clean out and do not have the energy to do it. Then, I cry for my parents and my husband and my cat. Getting sick changed my mind about having children ... my cat is my child. I want to grow old with my husband. I love him so much. I can’t talk about these things to him, because it upsets him too much.

I am acknowledging how serious my sadness and depression is getting ... I do have a counselor, and am on an antidepressant (Paxil), but I cannot afford to see her. I have not seen her since I have been out on disability. Not that I believe she could help me anyway ... unless she has a cure to make me better.

I am trying to pull myself out of this – today, I forced myself to walk outside. I took my cane with me in case I couldn’t do it. I hate that cane ... it’s just a reminder of this ugly disease that I am so very angry about having. I’ve posted in the past that I think about sick children and that takes my pity-for-me away ... I’m not there right now, though. I hate this disease so much – it has literally changed the person I used to be. I thought I was done “grieving†the loss of myself ... obviously, I am not.

One of you wrote that getting Sarcoidosis has “changed our script for life†... I could not have said it better ... no children, lost home, once lively and happy and productive taking care of my aging parents – now they are taking care of me – my father cooks and cleans; he takes my laundry to my mother’s home for her to do; my stepfather or my niece brings my laundry back. I used to be the one to do everything for everyone. If I cannot get better at least with the energy part, will lose my job, income, benefits, etc. I know many of you have lost so much, too ... I’m so very, very sorry. If we had to get a disease, I just wish it was something well-understood by the medical community and one which had a cure. I know that was a stupid statement, as I’m sure you all feel that way.

I recently e-mailed Dr. Om Sharma in California (I read about him in one of your posts). I asked him if he knew any Dr. in my area who treats the multi-systemic symptoms. He replied with a Dr.’s name at Mount Sainai in New York. I do not know anyone who is familiar with that area. It is a far ride. If I do find a way to get there, I will need to figure out where to find the funds to hire a driver to take me there (I hope there is such a person).

Oh well ... I need to go lay down again. I’m sorry for this depressing note (I normally only try to send positive posts). Thanks for listening.

Joan~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Joan,

I am sending you the biggest bootstrap in my collestion and a huge hug

to go with it.

You need to see a pain specialist.  I recommend you try adding klonipin

and/or duragesic patches with something for breakthrough.  The AMA

recently changed its policy about pain control, stating that it is the

primary concern after "do not harm."

I know, honey, how very, very sad it can be to just about lose your

life -- to lose your identity, anyway, to this disease.  Like most of

us you are a type A and can't let go of being a mover and a shaker. 

you have to achieve to feel good about yourself.  Well, I've been where

you are, and, frankly, I know that you have a way to go.  There are

cousellors out there who are trained to work with those who have

chronic diseases.

It does help to find (quickly) other goals which you can control.

I think you are well within your rights to question what kind of damage

your body will endure from the drugs.  But I am the poster child that

neurontin is very gentle.  I've been on it eight years, and have taken

the daily maximum for the last four.  You are the first person I have

heard complain of nausea with it.  But there are meds to help you with

the nausea.

I am getting too tired to finish, but know that you are always welcome

to have a pity party here.  There are many who know what you are going

through.

Many bootstraps to you,

                       

                                                                                                                             

pickstands@... wrote:

Dear Sarcoidonian

Friends,

Warning:  If you are

already depressed, please do not read this ...

 

I've been having

unusually high pain days recently ... I think I'm in the middle of a

Pity Party for Myself ... and No One to invite ... I apologize if you

are reading this ... that means you are on the guest list ...

 

I dread going to sleep

because I know the pain I will feel in the morning (the morning is

worst for me).  I have stopped taking the

complete dosage of neurontin the neuro suggests to continue increasing

.... I have to make a decision on what I can tolerate most that day ...

nerve pain or the nausea the neurontin causes.  Sometimes,

when I can't stop the coughing, and have absolutely zero energy to even

get out of bed, and not wanting my ankles to touch the floor because of

the pain, not wanting to move my arms, and NO ONE, except this group,

understanding what that feels like, and having my doctors not knowing

what to do because some medical tests do not always portray what I am

feeling, and my husband and family seeing me moving about some days

(not realizing I've dosed myself with pain meds just to do so) ...

well, some days, like the last few weeks, are very scary and depressing.  I am so tired of not knowing how I will feel from

day-to-day.

 

I am scared because I

hate taking all these different medications ... I am afraid to take

them, and I am afraid to not take them.  I am

afraid of relying on pain meds ... I need to take more than prescribed

.... just to get through the day and stop the f---ing pain. 

I hate being scared because my bottle is empty before I can

renew it.  The codeine in the Lortab keeps the

coughing down, too. When I am out of my pills, I cough terribly.  The doctors' prescribe me 1 Lortab 3x a day ... I

wait for 1 to kick in ... I know that I need to go downstairs and

shower and try to pretend I am a normal human being ... 1 does not work

.... I take 1 more.  That is what works.  Then, by late afternoon, it's wearing off ... so

take 1 more, and when that doesn't work 1 more (4/day). 

The "fake energy" also helps since I normally have none.  But

try telling a doctor that!!! ... they tell you that you are going to

destroy your liver.  Well ... according to my

pulm. doc, he says, we assume the liver is full of

granulomas anyway ... so, what? ... all the other meds combined aren't

going to destroy the liver? ... and they want you to take something

like Ultracet ... what a joke!...that doesn't touch the pain.  As many of you have posted, most doctors do not

realize the pain levels we feel ... I wonder if they would take 4

instead of 3 pain pills if they felt what we feel.

 

Can someone please

explain what is happening to my body?...my ACE levels were normal the

2x they were tested.  My EMG's show chronic

radiculopathy and peripheral neuropathy.  A

cervical and lower spine reveal several herniated disks in neck; 2

"slightly bulging" disks in lower spine and nerve pressing on L4-L5.  Disk is not bad enough for surgery. 

After 6 steroid epidurals in 2 years, Neuro indicated the

nerve is inflamed and touching the disk (vs. the disk inflamed and

pressing on nerve) -- which is what I having been thinking for a while;

hence, epidurals were unnecessary and did nothing.  

 

I am having a thoracic

MRI tomorrow ... no lesions found on previous MRI's.  (Neuro

has requested thoracic MRI only due to urological problems ... losing

control of bladder ... may be caused from meds?)  Neuro

continues to increase neurontin ... started out on 300 mg's/day in

April ... and increased now to 2400 mg's/day; indicated we may increase

to 3600 mg's.  I cannot tolerate the 1800

mg's/day I've been taking ... I get too nauseous.  Although

I take a minimum of 900 mg's/day now just so my body is not jolted from

the reduction of the neurontin and I don’t have a seizure, I just can't

tolerate the higher doses.

 

Although I and my family

doctor know that sarcoid can cause neurological problems, I now do not

believe my neuro thinks I have neurosarcoidosis due to lack of spine

lesions and normal ACE levels.  I know he at

least acknowledges the fact that I have inflammation in the nerves.

 

I was diagnosed with

pulmonary sarc in 2000.  My last chest x-ray

last December showed no active disease.  I

thought I was done with the symptoms...I was so very wrong.  My pulm. Doc, who I like very much, made 2

contradictory statements ... due to the granulomas in my lungs

disappearing, he said, “you are curedâ€.  On

another occasion, “well, Sarcoid never really goes

awayâ€.  When he heard I was having neurological

issues, he stated that he still needed to continue to see me.

 

I wish my family doctor,

who seems to know most about the multi-systemic part of the disease,

would be the only one to treat me.  However, he

needs to rely on specialists for each different area.  I

haven’t seen my dermatologist since 1997 ... I had 4 skin lesion

biopsies prior to be diagnosed with Sarcoidosis ... the results

indicated possible lichen planus or lichenoid dermatitis, or vasculitis.  We all know that vasculitis is another systemic

part of this disease.  During the period when my

lungs were bad, I had the “shin†granulomas.  They

were not biopsied at that time as diagnosis was confirmed via a

mediastinoscopy (lung biopsy).  I have, again since 1989, had very

"strange" lesions on my body -- feet, legs, arms, chest, buttocks ... I

have enclosed some photos.  These are not the same kind of "granulomas"

I had on my shin.  These are much different as you can see.  Does

anyone else have these type of lesions?...it is so painful to walk with

the nerve pain as it is ... but when I have edema in my legs, it

stretches my skin so badly, that walking is just about impossible with

these type of lesions.

 

My depression is really

bad now ... I just received in the mail Long-Term Disability forms to

complete ... I pick them up, start to complete them, then cry and have

to put them down.  I also received a benefits

package change.  I cannot bring myself to read

it yet.  I did see one page which indicated I

will lose my life insurance (my husband was recently in a car accident

and is also on disability ... he will lose his benefits soon, too).  I am trying to get a hardship withdraw from my

savings plan as I am struggling to pay my bills and unexpected

medical/prescription bills – I am not even sure they allow a withdraw

if you are on disability ... that makes no sense at all ... when you

need your own money the most, you can’t get it.  My

bills are getting paid late – when I have to choose to either pay for

prescriptions/doctor co-pays, etc., ... well, pretty logical which one

wins out.  My memory is starting to get wacky,

too (even when not taking any narcotic pain meds... sometimes I forget

bills are due.  Due to “special requirementsâ€

regarding my job, I cannot have credit issues.

 

My boss does not want to

replace me.  He said he has been spoiled with me.  Although that should make me happy, I get even more

depressed because I can no longer maintain the performance level I once

did when healthy.  I have, for many years now,

been rated/ranked in the top 10% of a 5000-employee workforce.  My doctor commented on my last visit that he is glad

to see that I am finally realizing I have limitations.  I

hate having limitations.

 

I want to go back to work

and be a “normal†person again.  I am afraid,

however – my job is stressful (the kind of stress my “old†self used to

thrive on) ... but not anymore ... we all know what stress does to our

immune system and body. 

 

I do not want to lose

benefits and depend on insurance companies and SS deciding if they will

provide me with the benefits I’ve been paying for since I was 18.  Many of you have written in your posts that SS does

not recognize Sarcoidosis as a debilitating disease.  Although

I never want another human being to get this ugly, not-understood,

disease ever again, I believe if the individuals making these decisions

lived for one day with the way we feel, they might get

it.  If I were healthy, I would not be able to

comprehend what this pain felt like, nor would I be able to comprehend

what it was like to have to lay down merely because getting dressed

drained the little energy I had just to get dressed.

 

My depression is getting

so bad that sometimes when I lay in bed, I apologize to God, but ask

him if I cannot get better, to just let it all end.  I

am beginning to have the thoughts that many of you have had ...

fortunately, I have too much to organize and clean out and do not have

the energy to do it.  Then, I cry for my parents

and my husband and my cat.  Getting sick changed

my mind about having children ... my cat is my child.  I

want to grow old with my husband.  I love him so

much.  I can’t talk about

these things to him, because it upsets him too much.

 

I am acknowledging how

serious my sadness and depression is getting ... I do have a counselor,

and am on an antidepressant (Paxil), but I cannot afford to see her.  I have not seen her since I have been out on

disability.  Not that I believe she could help

me anyway ... unless she has a cure to make me better.

 

I am trying to pull

myself out of this – today, I forced myself to walk

outside.  I took my cane with me in case I

couldn’t do it.  I hate that cane ... it’s just

a reminder of this ugly disease that I am so very angry about having.  I’ve posted in the past that I think about sick

children and that takes my pity-for-me away ... I’m not there right

now, though.  I hate this disease so much – it

has literally changed the person I used to be.  I

thought I was done “grieving†the loss of myself ... obviously, I am

not.

 

One of you wrote that

getting Sarcoidosis has “changed our script for life†... I could not

have said it better ... no children, lost home, once lively and happy

and productive taking care of my aging parents – now they are taking

care of me – my father cooks and cleans; he takes my laundry to my

mother’s home for her to do; my stepfather or my niece brings my

laundry back.  I used to be the one to do

everything for everyone.  If I cannot get better

at least with the energy part, will lose my job, income, benefits, etc.  I know many of you have lost so much, too ... I’m

so very, very sorry.  If we had to get a

disease, I just wish it was something well-understood by the medical

community and one which had a cure.  I know that

was a stupid statement, as I’m sure you all feel that way.

 

I recently e-mailed Dr.

Om Sharma in California (I read about him in one

of your posts).  I asked him if he knew any Dr.

in my area who treats the multi-systemic symptoms.  He

replied with a Dr.’s name at Mount Sainai in New York.  I

do not know anyone who is familiar with that area.  It

is a far ride.  If I do find a way to get there,

I will need to figure out where to find the funds to hire a driver to

take me there (I hope there is such a person).

 

Oh well ... I need to go

lay down again.  I’m sorry for this depressing

note (I normally only try to send positive posts).  Thanks

for listening.

 

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

[Guest guest]

Dear ,

Thank you for your very caring response (and your biggest bootstrap!!!) ... and from a post I just read from you ... you are amazing that you can write with all you are going through yourself!...you poor thing...

Thank you for the info on klonipin and duragesic patches (they are some of the meds I have read through some posts which I need to research on the net). As far as the neurontin, it must be that which is causing my nausea ... I was able to take up to 1200 mg's fine ... but once it reached 1800 mg's, I started getting this nausea periodically throughout the day. One day, I looked up the long-term side effects of using the various meds I am currently on ... Neurontin is the only one that mentioned nausea. My neuro and GP did not seem surprised by it, so I'm still assuming that is what is causing it. My GP did mention there were meds to take away the nausea, but that he did not want to add another medication to the list.

If my 401K savings plan does allow me to make a withdraw, I will surely re-visit my counselor. There is something said, however, in letting your feelings out with others who "have been there" ... and can possibly help some way in the various stages of "grieving", etc.

As far as other goals I can control ... I feel good about myself now just to get a short walk in the day with my father. He walks several miles a day ... it has kept him so young. He is always ready to take a walk around the block with me. I've only just recently started being able to walk past my door -- with the help of pain meds. So, that is my new goal ... taking a walk, even though not far, every day. Who knows ... maybe one day, I'll be able to do a 2-mile walk with my Dad.

Thanks very much again (and for the hugs, too!),

Joan

[Guest guest]

dear joan,

pickstands@... wrote:

Dear ,

Thank you for your very caring response (and your biggest

bootstrap!!!) ... and from a post I just read from you ... you are

amazing that you can write with all you are going through

yourself!...you poor thing...

Ah, but this illness is a walk in the park compared to the heartache

and health problems from my first marriage. Living with a serious

alcoholic is exhausting. I suffered from anxiety disorders and

anorexia. The therapist said I stopped eating because it was the one

thing in my life that I could control completely. I said it was

because everything had lost its flavor -- including anything joyous --

except raising my young sons and teaching. I became a real

workaholic-- not just because I wanted to avoid him at all costs, but

because I needed the money from teaching and sponsorships to make up

for the money he was drinking away.

After I finally decided that my sons were much better off without him

as a role model, I had the stress of being a working mom with children

too young to be "latch-key" oh, and did I mention I had become a

contract negotiator for the teachers' union and was working on my

masters in fine art in writing (I know it doesn't show here). Ummmmmm

oh, yes. I was also teaching senior writing (the same text and college

freshmen use), was student council sponsor and was the computer system

operator for the high school. In the summers I had graduated to

teaching other teachers all the wonders about the new macs that the

school board had purchased for each of them -- as long as they took the

course and passed the test that I and two other folks from curriculum

and development designed.

So.... I may have been to hell and on my way back with the sarc and all

the secondary conditions, but I am now married to a man with whom I am

still madly in love after eight years of marriage and almost two years

before that. We were engaged before I became ill, and it hit my brain

first -- all the docs thought I had MS. I did everything I could think

of to bring him to his senses, but he was as head over heels for me as

ever. (I was lucky that he was 34 and had never been married when we

started dating.

Sorry for this LOOOOONG explanation but I want you to know that I can

deal with the illness stuff much better than being heart broken that I

couldn't get my first husband to step up and be a good dad, and better

than all the stress from being a lifelong "quadruple A" (the words of

my first good neuro).

I will admit that I had to go through my share of idiot doctors who

thought it was all in my head (duh.. it was for the first five years),

but after three positive biopsies my dx is not in question anymore.

And there is all that free time I've had just lying in bed thinking. I

had lived my life as a "stuffer" according to one of my therapist -- a

person who does not deal with bad news or a bad situation, but instead

put it all in a box to go over later. Well, nine years is plenty of

later. I pretty much am settling into a very healthy spiritual

person. Now if I could just have my body back so I can catch up on all

the stuff I ruined for so long because all my MONK (the OCD tv

detective) anxieties prevented me from living in the moment and not

sweating the small stuff (of course, I am still a great believer that

g-d is in the details -- something any good performer or English

teacher must believe)

Thank you for the info on klonipin and duragesic patches (they

are some of the meds I have read through some posts which I need to

research on the net). As far as the neurontin, it must be that which

is causing my nausea ... I was able to take up to 1200 mg's fine ...

but once it reached 1800 mg's, I started getting this nausea

periodically throughout the day. One day, I looked up the long-term

side effects of using the various meds I am currently on ... Neurontin

is the only one that mentioned nausea. My neuro and GP did not seem

surprised by it, so I'm still assuming that is what is causing it. My

GP did mention there were meds to take away the nausea, but that he did

not want to add another medication to the list.

Well, since my pancreas, kidneys and liver are a mess who knows the

exact why -- I know what havoc the steroids waged against so much of my

body -- why shouldn't I believe all these meds I take have messed up my

insides too. I am just lucky. Only narcotics/opiates make me nauseous,

and the patch didn't because it bypassed my digestive system. I

couldn't handle the nausea from the mtx and the arrava, but had no

nausea from the infamous cytoxan or any of the non narcotic pain

management drugs. I am sorry that what could help you is off limits,

but I completely understand after the two oral chemo treatments. My

mother has chronic migraines and has only been able to tolerate imitrex

and excedrin. she is soooo sensitive to anything that remotely alters

her (this is the woman who practically got us killed on the streets of

Cleveland -- when we visited the Cleveland Clinic-- all over one glass

of white whine. It's almost sad and humorous how little she can eat or

tolerate orally. She initially moved in with us after forgetting her

thyroid medicine in Europe and being too pigheaded to try to refill

it. She fell backwards from her chair at work when she blacked out and

she broke three vertebrae. Then, just as she was getting back on track

( she was 71 and decided to retire after a strong encouragement from

her boss, plus she couldn't drive for six months because a cop pulled

her over because she was weaving all around the road and over the

medium.), that's when the Remicade stopped working and I had to take to

bed over MY drug reactions ( the mtx and then everything after).

Well, it has not gone well. My husband and my mother are very much

alike, and we have to continue to remind her that this is our house and

we will set the rules. We fixed up a nice large room for her where she

now spends over half her time -- those darned migraines and hiding from

my husband - haha.

I hope this diabetes or whatever gets under control soon so she can

find another apartment. We all want it, but she feels duty bound to

stay as long as I am still in bed most of the time. I think it's

called the blind leading the blind???? Poor woman. She divorced my

father as soon as I, the youngest, graduated and went to college, which

means she has lived alone for over 25 years, My husband has been on his

own since high school as well, living alone at least ten of those

years. Me... I've lived alone a total of three months, so I have this

compromise thing down. The two of them will be so much happier

resuming concurrent roles of king of the castle. haha I tried very

hard to get one of my three siblings who all live fifteen minutes away

in all directions, and all of whom have spare bedrooms, to take her

in. I was met with a resounding NO! Who would want to have to get

used to someone who wants to take over everything and is critical of

everyone but herself.

Good Grief!!!! I'm beginning to think I should have stayed in the

lurking corners. My posts are reaching chapter length!!!!!Arghhhh!

It's just that my mother is more of a dad -- and a dad who does not

enjoy casual conversation. My husband has taught all day and is only

interested in SILENCE when he comes home, and my son is not too keen

sitting in his sick mother's room, although he's getting better as he

matures (my other son is at college) So please forgive me. I'm a

natural Chatty , and since I'm not taking ritalin right now, I

can't blame my motor mouth (or more accurately "flying fingers") on any

"uppers." Thanks to you and all who are still reading and not sleeping

by now.

If my 401K savings plan does allow me to make a withdraw, I will

surely re-visit my counselor. There is something said, however, in

letting your feelings out with others who "have been there" ... and can

possibly help some way in the various stages of "grieving", etc

I don't need many words to wholeheartedly agree on that point. Just

don't get bummed if your posts aren't responded to quickly, or maybe

not at all. It's like menses synchronization-- we all seem to get

really ill at the same time. Just now it seems that things are

swinging up for most of us who have had a hard summer.

..

As far as other goals I can control ... I feel good about myself

now just to get a short walk in the day with my father. He walks

several miles a day ... it has kept him so young. He is always ready

to take a walk around the block with me. I've only just recently

started being able to walk past my door -- with the help of pain meds.

So, that is my new goal ... taking a walk, even though not far, every

day. Who knows ... maybe one day, I'll be able to do a 2-mile walk

with my Dad.

Walking is a wonderful and highly under rated

activity. For most of my illness I have had real difficulty walking

unassisted anywhere outside the home (and even that has been no

guarantee-- I have had to use a wheelchair for several months on one

stretch, and back before I learned to listen to my body and just stop

as soon as I feel my legs going, there have been more days than not

where I ended up using some kind of cane or walker and even Canadian

crutches and relying upon my upper arm strength to get around. For

most of the past nine years I have had to use a cane or two or a quad

cane anywhere where I had to wear shoes but didn't have to walk far.The

greatest liberator when I still had the energy to go about by myself

was/is my electric scooter -- I have had that for eight years.

Then something glorious happened. The Remicade I took last summer gave

me control over my legs again. I finally broke down and asked the doc

to write a script for a walker with a seat built in. It's very handy

for shopping -- it has a basket in front, and anytime at all when I

feel my legs are getting tired or uncontrollable (they do this really

weird thing in the heat where I give the mental command to go forward,

but the legs will only walk in a diagonal -- away from my goal -- when

that happens I it's usually in a parking lot and I know I look

positively drunk or crazy. Well, the Remicade stopped that long enough

that I started to take walks up and down the street (I used to do that

with my quad cane, but I was terrified of walking too far and having to

sit on the curb. Can you believe that I eventually walked around my

entire block (a large block it is, with lovely concrete in a

subdivision with no through streets and thus no traffic and plenty of

walkers!) After I made that goal, the weather started getting very

humid and hot (murder on the pulmonary sarc/asthma) so my girlfriend

and I took to driving to the mall just so I could get in as much

walking as possible. Unfortunately when the antibodies got too

plentiful we had to abandon the Remicade, and I haven't the energy to

walk right now-- but I still have my goals! Once this diabetes or

whatever insulin/glucose problem I am having gets rectified I know I

will be back to the walking.

It was the walking that got me off daytime oxygen, helped me lose forty

pounds (I've put thirty back on, but not from overeating.). I also

have read in my diabetes literature that exercise is great in helping

keep the glucose at an acceptably low level.

Maybe if you could get a sit down walker it would give you that extra

confidence, and a ready place to recharge you engines.!.

Thanks very much again (and for the hugs, too!),

I wonder if e-hugs are as notable healing as the face-to-face kind. I

think so. How many are we supposed to get a day? I get plenty from

hubby and son.

{{{{{{{{{{{{{{{{{{{{{{{{{{{{morning huggles}}}}}}}}}}}}}}}}}}}}}}}}}}}

and that was your first one of the day!

Joan

Take good care of you and don't feel unwilling to get enough pain

control that you are able to be as mobile as possible -- it's great for

the body and even better for the soul -- I admit I am just a wee bit

jealous, especially as I am Jewish and once again missing our most

spiritual days of the year.

Best Regards,

Reneness

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