Re: New & Need an Ear (FROM JOAN)

[Guest guest]

Hi Perky Deb!, and Tracie, and our very own "Deb"... and, of course, everyone else in the group ... whom I just read has increased 100+ members since I've joined!?!?!?!?!?\ ... to over 400?!?!?! members!~!!!!!

(?!?!?!? meaning ... "hey, what the H*ll is going on hear?!?! ... how come we have sooooo many new members so suddenly?!? ... Are there really so many people who have "neuro"sarc vs. "sarc"? ... I actually suspected that anyone dx'ed with sarcoid could so very easily be dx'ed with neuro or multi-system sarcoid. ... I guess because it was so easy for me to become one.)

Anyway, Perky Deb ... I am so sorry you are having these difficulties in your life with regard to your senses. As Tracie has asked, ... do you have any type of confirmation of sarcoid in your body? ... i.e., biopsy anywhere? I ask for many, many reasons. Obviously, the most important ... your treatment. And there is Disability and SSI. And as you describe ... you have so little support as you have not lost (yet at least) lost your hair, and have no scars, etc. (although many of us do have the "skin" scars and "mediastinoscopy" scars (lung biopsy).

I haven't written to the group in so very long ... not because I haven't wanted to, because I have missed everyone so very much, but because my hands and arms, if not my brain, have not allowed me to do so. I am having great difficulty in writing this in fact. I try to type a ":" and instead type in a "hard carriage return". etc., etc., etc.

Anyway, I am very glad to meet you and soooooooo understand your depression and lonlieness in that you have no one to talk with who can actually "understand" you. If you (or anyone!) wants to speak with me verbally over the phone, please e-mail me privately at pickstands@... ... I would be more than happy to give you my phone number ... I so yearn to talk to people ... I had the privilege of working with 5000 people during my working years ... and so miss talking...so very, very much. This time of year is especially difficult for me ... and my depression is hitting hard ... fast.

So, Perky Deb (which is what I will pray for you to be!) ... and to all ... feel free to e-mail me privately for my phone number ... and for the moderators or members who may already have it ... I would so LOVE to hear from you ... especially now!!! and, if you happen to have a Verizon cell phone, we can talk for free!!!

Love, hugs, prayers, and kisses to all!!!,

Joan

Hi Deb,Well you've come to the right place. We have lots of ears, and some can still hear stuff. I totally understand the frustration of being told that "you're just depressed" when you know there's something else going on. and yeah, when you don't have a cast, or that dead chemo look, or a scar to show what 's happening-- it's hard for others to figure out that you are sick. There is a booklet that we've all found helpful-- It's the BUT YOU LOOK GREAT! from Invisible Disabilities Advocate. You can read the first chapter online at their site. The address is in our LINKS. (Scroll down to the bottom section of this and every email and you'll see the LINKS connection.)What makes them think you have sarcoidosis? I know that the photosensitivity (uveitis and iritis) is horrible. It sounds like you've not had a biopsy that shows what's going on? I do hope you're seeing an OPHTHALMOLOGIST (md) and not an OPTOMETRIST (OD). tHIS IS serious stuff with your eyes, and needs agressive treatment with both predforte drops and homatropine or another eye drop to keep the eyes dilated. This can save your vision and keep you from an acute glaucoma attack.Much of the loss of taste, smell and hearing is the cranial nerves 6, 7 and 8. any inflammation, whether it's granulomas or vasculitis (swelling of the blood vessels) that puts pressure on those nerves can create these problems. Steroids only work so far-- take them away, when you have multi-system involvement, and your whole body goes into withdrawal. The pain of the withdrawal from steroids means that you're going down to quickly. If you've been on them for a couple of years-- your adrenals don't know how to produce cortisol, and they have to wake back up. We normally produce about 15mg of cortisol daily-- so if they put you on 60mg a day-- then it can take months to a year or more to wean off.The adrenals also control heart rate, blood pressure, the fight or flight reaction, as well as work with the other glands to produce hormones-- so yeah, if any of the glands (pitutary, hypothalmus, thyroid) get out of whack-- then you have all these symptoms. as far as the depression-- if you are in pain-- and it sounds like you are- then your sleep patterns are being disrupted. This throws off the seratonin and norepinephrine levels, and depression sets in. Then the depression can cause pain and anxiety, as can not knowing what is happening to you, and you are now in a pain/depression cycle. I know that adding all this, having kids leave home, losing friendships, all take a toll. A huge toll. However, you are not alone. We have 400+ people that are all in various stages of diagnosis. So the information we have gleaned is incredible, and we are willing to share and answer questions. Just ask-- that way we can pinpoint what you need addressed, and go from there.We don't have any MD's on this site. We're all in this and learning as we go. We've found that our information on sarcoidosis is generally much more progressed that what our MD's have. So feel free to use the LINKS and print out the articles to take with you to your MD's. You'll find that by empowering yourself and being proactive in your care-- that you will feel better. (and you'll scare the crap out of your MD's--which can be cause for celebration--ours, not theirs.) It may also take awhile for them to put their egos down, and work with you. If they can't do that-- find one who will. Do know that all our Moderators and Owners have this disease, and that we will try to make sure and answer your posts as quickly as possible, but if it's a day or so-- be patient-- we are tag-teaming out here between taking care of ourself also.Welcome to the group,TracieNS co-owner/moderator

[Guest guest]

Hi all. I have to agree with Tracie about tapering your steroid use gradually. I

have been on

prednisone, on and off, since 2000, the year I first got symptoms. Several times

the taper

was too quick resulting in a flareup of symptoms. There is no magic formula for

the

amount to taper. I have found that tapering down on alternate days seems best.

Example:

40 mg Sunday, 20 mg Monday, 40 mg Tues, etc... then the next week, 40 mg Sunday,

10

mg Monday, 40 mg Tuesday, etc...

I too get very depressed at times,usually when I get new symptoms or a new

problem. Like

today, for example. I have had a terrible time with a fracture in my left foot.

It broke 3

times, the final time badly enough to require a pin to be surgically placed.

Today I found

out the right foot has broken now, in the exact same spot as the left foot. This

is from

osteoperosis which has been caused from prednisone.

In a few days I'll recover emotionally and get back " up " but right now I want to

throw

myself down on the floor and cry. My family is very supportive. It's me that's

sick of it all. I

just want to be myself again.

>

>

> Hi Perky Deb!, and Tracie, and our very own " Deb " ... and, of course,

> everyone else in the group ... whom I just read has increased 100+ members

since

> I've joined!?!?!?!?!?\ ... to over 400?!?!?! members!~!!!!!

>

> (?!?!?!? meaning ... " hey, what the H*ll is going on hear?!?! ... how come

> we have sooooo many new members so suddenly?!? ... Are there really so many

> people who have " neuro " sarc vs. " sarc " ? ... I actually suspected that anyone

> dx'ed with sarcoid could so very easily be dx'ed with neuro or multi-system

> sarcoid. ... I guess because it was so easy for me to become one.)

>

> Anyway, Perky Deb ... I am so sorry you are having these difficulties in

> your life with regard to your senses. As Tracie has asked, ... do you have

any

> type of confirmation of sarcoid in your body? ... i.e., biopsy anywhere? I

> ask for many, many reasons. Obviously, the most important ... your

treatment.

> And there is Disability and SSI. And as you describe ... you have so

> little support as you have not lost (yet at least) lost your hair, and have

no

> scars, etc. (although many of us do have the " skin " scars and

" mediastinoscopy "

> scars (lung biopsy).

>

> I haven't written to the group in so very long ... not because I haven't

> wanted to, because I have missed everyone so very much, but because my hands

and

> arms, if not my brain, have not allowed me to do so. I am having great

> difficulty in writing this in fact. I try to type a " : " and instead type in

a

> " hard carriage return " . etc., etc., etc.

>

> Anyway, I am very glad to meet you and soooooooo understand your depression

> and lonlieness in that you have no one to talk with who can actually

> " understand " you. If you (or anyone!) wants to speak with me verbally over

the

> phone, please e-mail me privately at _pickstands@..._

> (mailto:pickstands@...) ... I would be more than happy to give you my phone

number ...

I so yearn

> to talk to people ... I had the privilege of working with 5000 people during

> my working years ... and so miss talking...so very, very much. This time of

> year is especially difficult for me ... and my depression is hitting hard

> ... fast.

>

> So, Perky Deb (which is what I will pray for you to be!) ... and to all ...

> feel free to e-mail me privately for my phone number ... and for the

> moderators or members who may already have it ... I would so LOVE to hear

from you

> ... especially now!!! and, if you happen to have a Verizon cell phone, we

can

> talk for free!!!

>

> Love, hugs, prayers, and kisses to all!!!,

> Joan

>

>

> In a message dated 9/12/2006 1:21:56 A.M. Eastern Standard Time,

> tiodaat@... writes:

>

>

>

>

> Hi Deb,

>

> Well you've come to the right place. We have lots of ears, and some can

> still hear stuff.

>

> I totally understand the frustration of being told that " you're just

> depressed " when you know there's something else going on. and yeah, when you

don't

> have a cast, or that dead chemo look, or a scar to show what 's happening--

> it's hard for others to figure out that you are sick.

>

> There is a booklet that we've all found helpful-- It's the BUT YOU LOOK

> GREAT! from Invisible Disabilities Advocate. You can read the first

chapter

> online at their site. The address is in our LINKS. (Scroll down to the

> bottom section of this and every email and you'll see the LINKS connection.)

>

> What makes them think you have sarcoidosis? I know that the

> photosensitivity (uveitis and iritis) is horrible. It sounds like you've not

had a biopsy

> that shows what's going on? I do hope you're seeing an OPHTHALMOLOGIST (md)

> and not an OPTOMETRIST (OD). tHIS IS serious stuff with your eyes, and needs

> agressive treatment with both predforte drops and homatropine or another eye

> drop to keep the eyes dilated. This can save your vision and keep you from

> an acute glaucoma attack.

>

> Much of the loss of taste, smell and hearing is the cranial nerves 6, 7 and

> 8. any inflammation, whether it's granulomas or vasculitis (swelling of the

> blood vessels) that puts pressure on those nerves can create these problems.

>

> Steroids only work so far-- take them away, when you have multi-system

> involvement, and your whole body goes into withdrawal. The pain of the

withdrawal

> from steroids means that you're going down to quickly. If you've been on

> them for a couple of years-- your adrenals don't know how to produce

cortisol,

> and they have to wake back up. We normally produce about 15mg of cortisol

> daily-- so if they put you on 60mg a day-- then it can take months to a year

or

> more to wean off.

>

> The adrenals also control heart rate, blood pressure, the fight or flight

> reaction, as well as work with the other glands to produce hormones-- so

yeah,

> if any of the glands (pitutary, hypothalmus, thyroid) get out of whack-- then

> you have all these symptoms.

>

> as far as the depression-- if you are in pain-- and it sounds like you are-

> then your sleep patterns are being disrupted. This throws off the seratonin

> and norepinephrine levels, and depression sets in. Then the depression can

> cause pain and anxiety, as can not knowing what is happening to you, and you

> are now in a pain/depression cycle.

>

> I know that adding all this, having kids leave home, losing friendships, all

> take a toll. A huge toll. However, you are not alone. We have 400+ people

> that are all in various stages of diagnosis. So the information we have

> gleaned is incredible, and we are willing to share and answer questions.

Just

> ask-- that way we can pinpoint what you need addressed, and go from there.

>

> We don't have any MD's on this site. We're all in this and learning as we

> go. We've found that our information on sarcoidosis is generally much more

> progressed that what our MD's have. So feel free to use the LINKS and print

> out the articles to take with you to your MD's. You'll find that by

> empowering yourself and being proactive in your care-- that you will feel

better.

> (and you'll scare the crap out of your MD's--which can be cause for

celebration-

> (and you'll scare It may also take awhile for them to put their egos down,

> and work with you. If they can't do that-- find one who will.

>

> Do know that all our Moderators and Owners have this disease, and that we

> will try to make sure and answer your posts as quickly as possible, but if

it's

> a day or so-- be patient-- we are tag-teaming out here between taking care

> of ourself also.

>

> Welcome to the group,

> Tracie

> NS co-owner/moderator

>