Re: [Neurosarcoidosis

[Guest guest]

,

gave me an idea I'd like to share with you, in Kay, we do

affirmations, In fact I really need to redo and start doing my again,

so think I will, point is: You write down your goals, and where you

want to be in like three months. example: " I love my kay

business, I've been working hard at it, and I am now heading into

directorship, I love the people I work with, and all those around me

are so wonderful and uplifting, each day is a beautiful day, and I love

life". Like I said this is just an example.

You write it down and post in different places where you will see it

everyday, like the fridge., your bathroom mirror. I actually should do

one, that says, OK, I will not fall apart today, I'm having a great day

and I love life. See just helping you, has helped me, that is how life

is.

Maybe you could become a mentor, like the boys club of America, I hear

they are always looking for good men to mentor younger boys who have no

father figure in their life?

, I know you don't like all this church stuff, but it's who I am,

when I was down and out, and my insurance refused Remicade, I just well

God where do I go from here....... and he decided I had enough and

healed me!

Well you are loved by many, when your not loved, people don't take

the time to help!

Hugs and God Bless,

Marla

AMEN....let's all get recycled! Aren't we all in that process...?

Who makes this list of who deserves what anyway? The biggest problem

with trash-thinking is 'settling' for less. But , ...if you are

gonna be trash... then be the King of trash. Make the best of what

ever you have or are. Remember what someone deems as trash is treasure

to somebody else. According to the constitution you have every right

that anyone else can have no matter what you consider yourself to be.

Abraham Lincoln started out as what many would consider trash....poor

and living in a small shack. Walked miles just to borrow a book.

Hey, doesn't that sound like going to the library?! The only

difference is he had a mission in life and he knew what it was. And I

doubt if Abe kept saying negative stuff to himself. He became what he

believed about himself. Most of us do. If being poor and

ill-considered is trash...then I'm trash. too. Grew up poorer than a

church mouse and ate government subsidies(powdered eggs! yuk) and wore

handmade or hand me down clothes. I think people get upset with gary

cuz he speaks whats in his mind and heart instead of what his dreams

for himself are. It's like a record caught in a groove and repeating

itself and you want to give it a shoove to move on. He's in a rut and

doesn't want or maybe doesn't know how to get out. For

example...someone says you're ugly and another person says you're

gorgeous. Who you believe will determine your life, won't it. If I

believe I'm ugly I will act or become ugly. If I believe I'm gorgeous

I will either be vain or just take better care of myself. It's all a

choice of WHO you believe and what you do with it. Someone told me

once to say nice things to myself while looking in the mirror at

myself. At first it felt uncomfortable but after awhile I believed

what i said about myself. But 'I' am the one who has to choose to say

it or not. But... I have to wonder what someone's agenda is who

constantly belittles themself. Do you 'know' that's what you're

doing? You are getting something out of it or you wouldn't keep doing

it. Or maybe you have just gotten too 'used' to talking about yourself

that way and noone stops you. You are verbally abusing yourself. Alot

of people say they can't do things or change but i usually say it's cuz

they haven't tried or gave up too soon. Even speaking positively about

yourself. Saying one nice thing about yourself every day will change

your outlook on yourself. But that's something you have to figure

out. ...just my opinions ...and hoping they are somewhat coherent this

morning S.

Rose wrote:

"Deer" , The one thing that I absolutely have in common

with you is the feeling of being trash. My mom's family are/were all

"respectable" people. Of course there were alcoholics, perverts, etc.,

but on the surface they all looked pretty good. My dad's family, on

the other hand, could fill up an entire Jeff Foxworthy book or album.

Most of them have lived at some point in their lives in a small

trailer, with a large dog. Before the age of computers that could

track people better, many of my relatives just packed up & moved

when they owed a lot of money--rent, cars, whatever. Go to another

state & start over fresh. All of my Dad's generation except my

Aunt Bunny (yes, that's her name) were either addicts of some type,

wife/child beaters, molesters, freeloaders, involved with the criminal

justice system, or all of the above. The next generation (mine) has a

higher percentage of "normal" people, and hopefully the 3rd will

improve on us. But I always had a deeply ingrained belief that my

family was "white trash" so that included me. To this day I feel

guilty driving a decent-looking car that doesn't smoke like a factory.

When I was still practicing midwifery, we had several families that

bonded with me. A family would have 4 or 5 women or girls have babies

& they always wanted Rose, no one else, to catch their babies.

These families were all from a small town near here known for being

headquarters for the KKK in Indiana years ago, and widely assumed to

have a lot of inbreeding. Now the town has worked hard to change those

perceptions, but these families I'm thinking of fit that profile

exactly. They do drive pickups with gun racks in the back window &

they can be a scary bunch of people. But I always felt safe &

comfortable with them & one day I realized why: I knew I was one

of them. The big difference was that I didn't smoke or chew and I had

a college degree. Now this may strike some of you as a terrible,

prejudiced attitude to have, and you would be right. But I have never

been able to shake it. And when I was trying to find a house to rent

after losing my house to bankruptcy, everything in my price range was

either a junky house or in a junky area. I thought to myself, you are

just getting back to where you belong, because those are the kind of

houses I lived in as a kid. Then I got lucky & got a decent house

in a nice neighborhood, with WalMart across the street! What a bonus!

But the thing is , even though I do think of myself as

"white trash" at the core, "white trash" deserves the best, same as

everybody else: best health care, best education, best oppor-tunities,

best assumptions. I loved those families as much as any I knew &

tried just as hard to give those babies a healthy start as any babies.

And I know that I also deserve the best, no matter what label I attach

to myself with Super Glue.

I understand if you are not able to shake off that label of

"trash," but read what I wrote above: even trash deserves the best.

So don't argue with me, Woolard. You deserve the best health

care, the best disability attorney, the best chance to find happiness

& fulfillment in your life, and all the rest.

And you know what, I believe that when enough people in these

families, like yours & mine, get these opportunities, their

opinions of themselves will rise & one day NO ONE will believe that

they are "trash." So, call yourself trash if you want, but look at

yourself as "recycling," becoming useful in a new way. Can you do

that? It's a struggle. I know, because being a midwife was my

identity; it made me feel useful. Now, I'm not sure what I'm being

recycled into, but I'm willing to let myself be smashed, grinded,

melted, whatever it takes. Come on, jump in that recycling bin with

me!

BTW, I was raised Catholic, left the Church to marry, bounced

around different denominations for many years, with my faith going from

none to maybe to absolute. I'd encourage you to learn about different

spiritual avenues; it's not all about "church;" you may find peace

& support through another path.

Ramblin' Rose

Moderator

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[Guest guest]

,

you are right the place, there are a lot of us here, and some are

nurses. I was (am) a Nurse for 30 years too, I say still am, because I

am teaching at a local Community College, in the Health Science dept.

right now I'm teaching Med. Term, so I can still use my knowledge, and

the students know that sometime my brain justs stops and I can't think

of what I am going to say, so I rely on my notes and somehow keep

going. But I was a Labor and Del nurse for years, which was my real

love, don't think I will ever be able to that again. I can not do the

12 hour shifts thats for sure.

My medications are Plaquanil, Methotrexate, Nortriptyline, Lorazapam,

vicodin. I was on Neurontin, but had a "healing" in Nov. 05 and some

things are better, but not all. I still have Left side pain for which

I was taking the Neurontin for, but it's not any worse then when I was

on. My "healing" took away a lot of pain, but mostly gave me a lot of

my energy back and that I am thankful for, for God is good to me.

I tried to come off some of the others but the head pain is just too

much, so for right now, I will take it slow. I also take folic acid

for the Mtx, and a multi vitamin, and stress B vits. Even though I feel

better then I have in years, I still have bad days, and good. I still

get depressed. I am going through daily ups and downs right now, I

think it's partly going off some of the drugs, and partly hormone, I am

that age too.

the doc wants to put me on more drugs to treat the coming off the drugs

symptoms, I said NO thanks, I think I will ride the storm as long as I

can??

you sound a little better, I hope that means you are, as you can

see you have found a new family here at with us NS family, that is what

we are, the best people you will ever meet, right here at your finger

tips, just let us know what you need?

Keeping you in my prayers,

Marla

what kind of meds are people with neuro taking now. I'm on Imuran 50mg tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp meds ambien 10mg hs. but i cant shake this internal anger and anger at people who dont understand how I feel. Its like if I have to live like this then why live. I was a nurse for 30 years and would like to know what else other people are taking. I understand there is a Dr in St Louis who specializes in sarcoid. I live in AR so not a great distance for me. Anyone else heard of him. But there is also the issue of my disability I dont want to screw it up. I would love to hear from anyone who has this and knows what I'm going thru. My parents are in their 80's so they dont understand. If you cant see it then its not there. They just feel I'm a mental case. My grown children's response is "take your medicine and go to bed." I have no one else but my 4 dogs who do love me.If there is something else maybe I can talk to my pcp about it although he really doesnt want to deal with my sarcoid. thanks, nancy

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