Re: Thought stopping

[Guest guest]

Mitch,

Thank you so much for reminding us that when we start obsessing about all the "could be's" that what we are really doing is robbing ourself of enjoying the time we have now!

When I was in Auburn Pain Medical & Rehabilitation Clinic, one of the first things they did was to teach us the value of getting out of the worry of our pain-- and start by learning to use "thought stopping" so that we didn't spin out and create issues that may not be happening.

Studies show that our bodies CANNOT decipher our fear from reality. Our brains want to meet our expectations-- so everytime we play the tape-- ie. "I'm in pain, I'm (fill in the blank)-- our immune system reacts.

Change the channel-- the mental channel-- and the results are incredible.

I can't tell you how many times over the years, that I've had to remind myself that my fear of what could be is so much more intense than what is.

For years now, I've carried a note in my wallet that reads:

It is in my urgency to control my pain that I find the "frantic self" calling:

My Chiroprator, my therapist, my massage therapist, my doctor , my friends;

in my panicked mind to seek a solution- a distraction so that I am not swallowed whole by this pain. Yet in my quietude, I begin to let go-- of the need to control (that is to stop the pain) and just be. The fear of the pain is bigger than the pain itself.

WE have an inate ability to heal-- and that ability has to start with a change of heart. Each time you see yourself starting down the fear path- tell yourself to STOP!

Tell yourself that you know the pain-- that it is not a stranger. You know that you will not be consumed, and that with a few deep, slow breathes, some "quietude" that you will come out from this signal that says-- be still-- I need you to pay attention to what you are doing to your body-- and this is the only way I can get your attention.

Bless this signal-- it is a reminder that you are perfect as you are-- and that a moment of honoring your very being, engulfing yourself in light-- and being lovingly present to yourself is truly the first step in healing.

When I tell you that I am holding you in my heart-- that is what I am doing-- I am surrounding you in a blanket of healing light.

All of us deserve good health-- and only you can change what you are asking your body to do!

From my heart,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, May 17, 2010 7:59:24 PMSubject: Re: Long lost friend...

Sandy,

I'm a Chiropractic Orthopedist, I have been in practice for over 20 years and I think I'm the most qualified to give you advice on this "bump" on your Coccyx.

My advice is simple, STOP THINKING ABOUT IT RIGHT THIS SECOND. I can write and tell you ten things it might be that are good and the same for what is bad. The only thing your doing right now is driving yourself insane. The people on this board are wonderful, they gave me the most incredible gift I could have received after the last 9 years-that I'm not alone and not crazy.

But with something like this your going to get 100 different possibilities and you won't hear or believe any of them that are good, you'll just dwell on the one's that are bad.

This is whole situation is simple, go to you Doc and let him order a simple x-ray. In 24 hours you'll have a good idea of what it is or isn't and chances are it isn't anything serious but if it is you'll know for sure without any speculations from 100 caring people who do a lot of reading. Problem is when you read, you read mostly about the bad stuff because "Increased Calcification of the Coccyx" is boring.

If you live in Pa or NY and don't want to go to the Doctor because your afraid let me know and I'll write you the script for the x-ray.

Either way this time tomorrow there's a good chance you can have an answer.

Please take something to calm down, stop reading and get a picture taken tomorrow, please.

I'm here if you need me. If you need me to call just send me your phone number and I'll give you a buzz. mjcv29a (AT) aol (DOT) com.

My philosophy is "It's nothing until they prove us wrong" so for right now it's NOTHING.

Yours in Health,

Mitch

Re: Long lost friend...

Hi Sandy, My memory has been effected with this crazy disease, I've been around awhile, and I'm sure you were here then. Anyway, it's good to see you posting again. are you sure that the lump on your tailbone is Chordoma, from what I've read that is a type of bone cancer, I think would require surgery??? Have you had it biopsied?? that should help tell you what it is. I have lumps and bumps all over my body, in my spine and base of my skull to, but there very very small, but do a lot of damage. I've had some of my lumps biopsied, and they come back as granulomas, which is common with Sarcoid. I know it's frustrating, I'm on several medications and it's barely holding the disease process back. Every day is a new day for sure. The drug that has helped me the most so far is Remicade, I get it every 5 weeks, it's about a 3 hour infusion, but it has truly been my friend, this is

not so with everyone. I'm sure you will hear from others too. Glad to have you back. Marla

On Mon, May 17, 2010 at 3:33, <savnsan (AT) yahoo (DOT) com> wrote:

Dear friends, I'm not sure if anyone is here who will remember me. I was very active in the group several years ago and it (you) saved my sanity. Long story short, I have been disabled due to some mysterious illness for almost 9 years. I felt certain that its neurosarc from the beginning. The symptoms match, sarc is in my family, Dr. Baughman in Cincinnati thinks its a good possibility, I even got Bells Palsy last year!! But because of no definitive markers I can't get a proper diagnosis or proper treatment. I've lost almost a decade of my life and I find I'm able to do less every year. I doing some new tests soon, but I've learned not to expect anything. Now something new has developed - a hard lump on my tail bone. It's not a cyst, it doesn't move and it doesn't hurt, but its to the point that I'm uncomfortable lying on my back and sometimes sitting down. It's as if my bone has become misshapen. It's happened slowly. i started

noticing it about 3 years ago, but I've never mentioned it to a doctor - I've been made to feel crazy too many times. So get this - I look up the symptom online and it points to something called chordoma. The most common sites for this illness are the tailbone and the base of the skull. Those are the two areas of the spine I have trouble with - lots of headaches and stiffness in the neck, and the growth on the tailbone. And if those two places are affected,symptoms are almost identical to NS - even facial palsy is mentioned.So that's where I am. I've been meaning to stop by here for months now. I know I'll find support and kindness here and I promise to give it as well. :)All the best - Sandyp.s. It's 5:30am - I hope this makes sense! LOL