Re: Need to get this off my chest...

[Guest guest]

Rach, you are not a fraud! You are sick. Give yourself some slack- it's easier than tugging on that noose-- honest!

Many of the meds- prednisone at the top of the list will induce depression. So do most of the medication, as they all seem to wipe out the B vitamins in our system. Also, if you aren't getting out and pointing that face to the sun for even a couple of minutes a day (those of you who live back east- even under clouds- look upward and the uv's wil come through-- activating the right Vit D in your system. Ten minutes or so a day works wonders.

If you are in pain- take your medication before you hit the wall, so that your are "controlling" your pain-- instead of trying to get it under control. Pain also wipes out our sleep cycles, and lack of sleep means a disruption in our seratoning and norephinephrine levels-- so you may need an antidepressant.

Most of us use antidepressants as part of our pain management- so don't go into the "I'm bad because I have a mental illness issue." I'm hoping you read the email I sent out on the Five Levels of Grief-- as it is so very important to understand what is going on with you.

Do take care, and know we're here for you.

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sun, March 14, 2010 9:28:41 PMSubject: Need to get this off my chest...

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping"

and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach

[Guest guest]

you are sooooooooooooo good trace

Subject: Re: Need to get this off my chest...To: Neurosarcoidosis Date: Monday, March 15, 2010, 3:41 PM

Rach, you are not a fraud! You are sick. Give yourself some slack- it's easier than tugging on that noose-- honest!

Many of the meds- prednisone at the top of the list will induce depression. So do most of the medication, as they all seem to wipe out the B vitamins in our system. Also, if you aren't getting out and pointing that face to the sun for even a couple of minutes a day (those of you who live back east- even under clouds- look upward and the uv's wil come through-- activating the right Vit D in your system. Ten minutes or so a day works wonders.

If you are in pain- take your medication before you hit the wall, so that your are "controlling" your pain-- instead of trying to get it under control. Pain also wipes out our sleep cycles, and lack of sleep means a disruption in our seratoning and norephinephrine levels-- so you may need an antidepressant.

Most of us use antidepressants as part of our pain management- so don't go into the "I'm bad because I have a mental illness issue." I'm hoping you read the email I sent out on the Five Levels of Grief-- as it is so very important to understand what is going on with you.

Do take care, and know we're here for you.

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sun, March 14, 2010 9:28:41 PMSubject: Need to get this off my chest...

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping"

and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach

[Guest guest]

Hello,

Some days you carry people. Other days you allow others to feel useful in helping you.

Life for people with ms or sarc is a roller coaster. You are what you are. You feel what

you feel. Please don't feel you have to present yourself in a certain way that would be

acceptable to other people because then you would be alone and you're not.

Life is a journey. If I knew everything from the start and never changed my perspective

there'd be no point in being here.

Sounds to me as if you're honest, brave, and smart enough to ask for what you need.

I'm sorry you're going through a tough patch but if anyone will make it you will. =)Cheers,

Darrin

To: Neurosarcoidosis From: stiks11@...Date: Mon, 15 Mar 2010 04:28:41 +0000Subject: Need to get this off my chest...

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping" and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach

[Guest guest]

Dearest Rach:

I am somewhat feeling the same when you said you feel like a fraud! If you go back to my post: Caregiver/caregiving--I was at wits ends, because I, like YOU, was venting! And I was just as vulnerable, as a caregiver, in feeling "Alone" and frustrated! I remember responding to others who were down and out and commented on how my faith has pulled me through--yet at the time of me posting of caregiver/caregiving, I felt guilty for not taking my own advice/comment. So yes, talk about being a fraud--I felt the same way! I still have my faith, though, believe me!

At the time of the writing, feelings of negativity overwhelmed me and nothing said or done, would make me feel better! Needless to say, I needed to vent and for some reason, I realized there is a SUPPORT group such as ours, who has unconditionally listened and commented and can actually relate to all circumstances we've been through and still going through.

I always knew in my head, that writing things down of your true feelings, such as journalizing would help. But in my case, I wanted people to really know what I was feeling at the moment--yet I was afraid what they would think. Many times I have written to the group and/or journalized--only to "cancel", It took all my strength (mostly mentally) to press that "send" button upon me venting to what I posted re: Caregiver/Caregiving. Then it took several days to open up my e-mail and read the comments given me. What made me feel worse, is that I didn't respond to the people who shedded sound advice or just merely "moral" support. So for those out there, who did respond, I thank you from the bottom of my heart!

My husband at one time used "cellcept". What it was for, I don't remember. It's going on a year that we have seen our neurologist at the Mayo Clinic in Jacsonville. We were referred to a Rheumatologist, who wanted to do treatments of Remicade. I must say it did help, but other ailments arised. At the time he was having trmts. for Remicade, he was using a walker and/or could "stand" to transfer himself. Then I started to realize he was getting confused and or depressed, of which I wanted him to get a Psych consult. But then he was in denial! I ended going to my doctor myself, only to be prescibed an anti-depressant and was told, unless my husband feels he needs the help, there is nothing I can do! I was in tears the next visit w/ hubby's rheumotologist and expressed my feelings. The doc was able to persuade my husband in seeing a "specialist" at the clinic, od

which he was prescribed anti-depressant and instructed to go to counseling. After all that, my husband started to go downhill, as far as using the walker, anymore. Last year he has been in/out of the hospital because of Sepsis! He started losing strength and to this day is bedridden/paraplegic. I am now and have been focusing on his bed-sore. To make a long story short, our next step is for him to have plastic surgery to do a "flap" of his coccyx area. I still walk on egg-shells with him. One moment he's fine, next minute I'm being bitched at for something so small, or having no control of, that it's not worth the time/energy to explain, in fear of being augumentive! He did at one time experience pain in his bones. It did radiate from his knee, down his shin. He also had pain in his shoulder and down his arms. But now that I think about it, the pain(s) were

more prominent on his "one" side of his body(right more than left or vice-versa). He had CT scans/MRI's of his brain, of which granulomas were detected. Therefore, which ever side it was on, affected the "other" side of his body. How being paraplegic "all of a sudden", is still a mystery. We have seen our local neurologist, who has referred us back to the Mayo clinic last year. We were not able to go back because of our insurance billing issues. That is another issue to explain! But as far as if the med cellcept was prescibed for his pain, I can't remember. I know he is presently taking Celebrex (200mg) once daily for pain! I may ask the doctor that he be taken off of Celebrex, because he has NO pain right now or hasn't for the longest, being paraplegic. I remember while he was hospitalized, that he was given a NEW med, in addition to the Celebrex, for pain. I asked the Who,

What, When, Where and Why question, for subscribing the New Pain medicine. Seriously, it was noted for pain, yet I felt it was un-necessary and that he be taken off, for the simple fact--he had NO pain. They even asked my husband, of which he said NO. I also made the statement, that even if he did have pain(of which it was not documented in his files) that he wasn't able to say anything because he was just coming out from being confused! Like Traci and other members of the support group mention--that WE need to be advocates for ourselves and not take everything for granted of what the medical physcian(s) dish out to us!

I'm so sorry that you, as well as others in this support group, must go thru this ordeal of this disease. The highs/lows and hopes/dreams are shared among this support group. We've been there, done that! With that being said, prayers will be continued for "all."

I wish you well Rach!

Subject: Need to get this off my chest...To: Neurosarcoidosis Date: Monday, March 15, 2010, 12:28 AM

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping"

and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach

[Guest guest]

((((((((((((((( group hug )))))))))))

Thanks Bill,

Tracie

To: Neurosarcoidosis Sent: Mon, March 15, 2010 3:34:34 PMSubject: Re: Need to get this off my chest...

you are sooooooooooooo good trace

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Need to get this off my chest...To: Neurosarcoidosis@ yahoogroups. comDate: Monday, March 15, 2010, 3:41 PM

Rach, you are not a fraud! You are sick. Give yourself some slack- it's easier than tugging on that noose-- honest!

Many of the meds- prednisone at the top of the list will induce depression. So do most of the medication, as they all seem to wipe out the B vitamins in our system. Also, if you aren't getting out and pointing that face to the sun for even a couple of minutes a day (those of you who live back east- even under clouds- look upward and the uv's wil come through-- activating the right Vit D in your system. Ten minutes or so a day works wonders.

If you are in pain- take your medication before you hit the wall, so that your are "controlling" your pain-- instead of trying to get it under control. Pain also wipes out our sleep cycles, and lack of sleep means a disruption in our seratoning and norephinephrine levels-- so you may need an antidepressant.

Most of us use antidepressants as part of our pain management- so don't go into the "I'm bad because I have a mental illness issue." I'm hoping you read the email I sent out on the Five Levels of Grief-- as it is so very important to understand what is going on with you.

Do take care, and know we're here for you.

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sun, March 14, 2010 9:28:41 PMSubject: Need to get this off my chest...

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping"

and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach

[Guest guest]

Thank you everyone who responded to me. I went to the GP this morning and was

totally honest about how I feel. Left my brave mask at home! I'm going to see a

psychologist and also a service that helps to get people with a chronic illness

back into the community.

>

>

> >From: tracie feldhaus <tiodaat2001@ yahoo.com>

> >Subject: Re: Need to get this off my chest...

> >To: Neurosarcoidosis@ yahoogroups. com

> >Date: Monday, March 15, 2010, 3:41 PM

> >

> >

> > 

> >Rach, you are not a fraud!  You are sick.  Give yourself some slack- it's

easier than tugging on that noose-- honest! 

> >Many of the meds- prednisone at the top of the list will induce depression. 

So do most of the medication, as they all seem to wipe out the B vitamins in our

system.  Also, if you aren't getting out and pointing that face to the sun for

even a couple of minutes a day (those of you who live back east- even under

clouds- look upward and the uv's wil come through-- activating the right Vit D

in your system.  Ten minutes or so a day works wonders. 

> >If you are in pain- take your medication before you hit the wall, so that

your are " controlling " your pain-- instead of trying to get it under control. 

Pain also wipes out our sleep cycles, and lack of sleep means a disruption in

our seratoning and norephinephrine levels-- so you may need an antidepressant. 

> >Most of us use antidepressants as part of our pain management- so don't go

into the " I'm bad because I have a mental illness issue. "   I'm hoping you read

the email I sent out on the Five Levels of Grief-- as it is so very important to

understand what is going on with you. 

> >Do take care, and know we're here for you.

> >Tracie

> >NS Co-owner/moderator

> >

> >

> >

> >

> ________________________________

> From: rachyanne <stiks11 (AT) hotmail (DOT) com>

> >To: Neurosarcoidosis@ yahoogroups. com

> >Sent: Sun, March 14, 2010 9:28:41 PM

> >Subject: Need to get this off my chest...

> >

> > 

> >I feel such a fraud. if you read back on my posts I was going on about how

positive I am about life, and how I'm coping with it all and yet I " m so close to

collapsing in a little heap.

> >

> >Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and

had it for 7, and was coping. I went to the MS society, my family did

fundraisers, I read about 'cures' and I was coping. And then two things

happened.

> >

> >1. they rediagnosed me with sarcoidosis and all of the above went out the

window.

> >

> >and

> >

> >2. we moved to the country. where health services are beyond limited. Today I

tried to make an appointment to see my gp because my neuro in the capital city

(3 hours away) picked up I need counselling again but my gp will need to

organise it. It will 1 and a bit months before I can see the gp, so how will I

go getting counselling.

> >

> >I'm constantly teary and I feel quite alone.

> >

> >I'm sorry for coming across all " i'm coping " and I hope I didn't make anyone

who wasn't feel bad. I just couldn't admit that I wasn't.

> >

> >I'm also wondering does anyone have bone pain from using cellcept or is this

the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.

> >

> >Rach

> >

> >

>

[Guest guest]

Hey June

Can your Mayo quarterback help with the insurance issue?

From: rachyanne <stiks11 (AT) hotmail (DOT) com>Subject: Need to get this off my chest...To: Neurosarcoidosis@ yahoogroups. comDate: Monday, March 15, 2010, 12:28 AM

I feel such a fraud. if you read back on my posts I was going on about how positive I am about life, and how I'm coping with it all and yet I"m so close to collapsing in a little heap.Partly because of the sarcoidosis. I was diagnosed with MS for 5 years and had it for 7, and was coping. I went to the MS society, my family did fundraisers, I read about 'cures' and I was coping. And then two things happened.1. they rediagnosed me with sarcoidosis and all of the above went out the window.and 2. we moved to the country. where health services are beyond limited. Today I tried to make an appointment to see my gp because my neuro in the capital city (3 hours away) picked up I need counselling again but my gp will need to organise it. It will 1 and a bit months before I can see the gp, so how will I go getting counselling.I'm constantly teary and I feel quite alone.I'm sorry for coming across all "i'm coping"

and I hope I didn't make anyone who wasn't feel bad. I just couldn't admit that I wasn't.I'm also wondering does anyone have bone pain from using cellcept or is this the sarcoid. It's in my knee, down my shin and in my elbow and down my arm.Rach