Re: Emotions from little r

[Guest guest]

little r,

First let me wish you and your family a Blessed and Pain free

Christmas. Now NS the monster that it is, causes glandulars in your

head swell up press against your Brain causing you to have vertigo. I

have same problem. In my case I have been walking and lost control of

body and fell. I can't remember what did yesterday. And sometimes

bring memories to the front of my mind that I don't want to remember

(military combat). I found that (I am in DFW, Tx.) That UTSW in Dallas

is tops in sarc. research and I have appointment them to be checked

out. This the second time NS hit me, this time harder then first.

Nobody knows the cause of Sarc. and there is no real cure but if do

everything possible and have good attitude about you can Control it.

Your are in right place, now these wonderful people will support you

and give you emotional support. It's hard to remeber everything right

now, I had 4 bad days back to back but least it an't 5 yet!

AIRBORNE positive attitude can help fight the Monster (NS)

Greg

>

> I have been quiet for awhile but reading every post. Since I was

> diagnosed with NS about 6 weeks ago it has been a medical waiting

> game. The latest thing they want is for me to see a neurosurgeon

> about a brain biopsy because of a thick lining around parts of my

> brain. Meanwhile I still have times of vertigo problems and the more

> I read about NS I wonder about other areas like the redness of my

> eyes, the constant ringing in my almost deaf left ear, the swelling of

> the ankles and other things. But the main problem I have found is the

> change in emotions I feel while learning what I can about NS. The

> more I learn the more my emotions run wild not knowing anything sure

yet.

>

> I am so thankful for the group and the information you have to share

> for which I say thank you so much.

>

> It seem to me if NS is as critical as it is I am getting lost in the

> medical end of it with this wait. I am thinking about started to

> journal my feelings and would like your advice. Is this something I

> should do for my eyes only or do you think and online blog would be

> better? I do not think I want to hold all of these emotions inside

> much longer.

>

[Guest guest]

Ron, whether you choose to share your emotions with all of us, or keep a private journal-- is up to you. This group is about sharing and dealing with the emotions-- and believe me-- we all have them. It is impossible to not have days where the overwhelm isn't trying to tackle you and keep you down.

You are welcome to share here!

I know for years when I first started learning about sarcoidosis, and I had a 5 yr hiatus before it came screaming back fully systemic-- I found myself describing the sensation that I was living in a vortex, that could suck me into space or into hell at any given moment--- and I was fighting to stay somewhere near the middle.

The vortex took on a conical shape, with the top of the vortex and the bottom of the vortex being narrowed-- the center was the 2 cones coming together in it's widest part.

This is a scary disease, but one you will live with for many years-- and finding the right "cocktail" to keep you life as "normal" as possible is key.

It reminds me of the bumper sticker, "Sit down, Shut up, and Hang on-- you're in for the ride of your life!" The other favoritie is "If you don't like my driving, get off my sidewalk!" is also a mind bender.

You'll find humor in strange places....

The more all of our members share this experience, both the good and hard parts-- the more we all grow. So, my friend, share away!

Most sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thursday, December 18, 2008 4:37:51 AMSubject: Emotions from little r

I have been quiet for awhile but reading every post. Since I wasdiagnosed with NS about 6 weeks ago it has been a medical waitinggame. The latest thing they want is for me to see a neurosurgeonabout a brain biopsy because of a thick lining around parts of mybrain. Meanwhile I still have times of vertigo problems and the moreI read about NS I wonder about other areas like the redness of myeyes, the constant ringing in my almost deaf left ear, the swelling ofthe ankles and other things. But the main problem I have found is thechange in emotions I feel while learning what I can about NS. Themore I learn the more my emotions run wild not knowing anything sure yet.I am so thankful for the group and the information you have to sharefor which I say thank you so much.It seem to me if NS is as critical as it is I am getting lost in themedical end of it with this wait. I am thinking about started

tojournal my feelings and would like your advice. Is this something Ishould do for my eyes only or do you think and online blog would bebetter? I do not think I want to hold all of these emotions insidemuch longer.

[Guest guest]

I had the brain biopsy. Scary as it was I guess it was needed. I still battle with the vertigo off and on. I take meclazine for that. It does help. I also suffer from ringing in my ear and it is constant. I have learned to ignore it for the most part. My speech has been affected as well as memory. AAAHHHH the swelling in the legs and feet have to keep the legs up each day to relieve it. I also take Lasik water pills that really helps but I need to stay close to home for a couple of hours after taking it if you know what I mean. *wink*

Please hang in there. It does get better at times. Flare ups with me are far and few between, (knock on wood).

God Bless and Keep you. Know you are in my prayers.

Jackie

Emotions from little r

I have been quiet for awhile but reading every post. Since I wasdiagnosed with NS about 6 weeks ago it has been a medical waitinggame. The latest thing they want is for me to see a neurosurgeonabout a brain biopsy because of a thick lining around parts of mybrain. Meanwhile I still have times of vertigo problems and the moreI read about NS I wonder about other areas like the redness of myeyes, the constant ringing in my almost deaf left ear, the swelling ofthe ankles and other things. But the main problem I have found is thechange in emotions I feel while learning what I can about NS. Themore I learn the more my emotions run wild not knowing anything sure yet.I am so thankful for the group and the information you have to sharefor which I say thank you so much.It seem to me if NS is as critical as it is I am getting lost in themedical end of it with this wait. I am thinking about started tojournal my feelings and would like your advice. Is this something Ishould do for my eyes only or do you think and online blog would bebetter? I do not think I want to hold all of these emotions insidemuch longer.

[Guest guest]

I journal, some days a lot, and then maybe go for weeks and not journal at all, then I will pick it up again. 5 years ago when my Sarc went Neuro I too had many emotions to deal with, I've had Sarc for 14 years, neuro the past 5. I guess I even journaled then too, but when emotional I find it really helps me. I have serveral journals around the house and just pick one up and start writing, and it's fun to read to see how far I've come with dealing with this disease, emtionally a long way, my body worse. I can only walk so far, need a wheel chair to do long distance. I am on Remciade now every 5 weeks after a year long battle with my Insurance company, and I am finding out that my brain is more important then my legs

I wish you much luck, you are welcome to vent, cry etc.. here, that is what we are here for. Marla

I have been quiet for awhile but reading every post. Since I was

diagnosed with NS about 6 weeks ago it has been a medical waiting

game. The latest thing they want is for me to see a neurosurgeon

about a brain biopsy because of a thick lining around parts of my

brain. Meanwhile I still have times of vertigo problems and the more

I read about NS I wonder about other areas like the redness of my

eyes, the constant ringing in my almost deaf left ear, the swelling of

the ankles and other things. But the main problem I have found is the

change in emotions I feel while learning what I can about NS. The

more I learn the more my emotions run wild not knowing anything sure yet.

I am so thankful for the group and the information you have to share

for which I say thank you so much.

It seem to me if NS is as critical as it is I am getting lost in the

medical end of it with this wait. I am thinking about started to

journal my feelings and would like your advice. Is this something I

should do for my eyes only or do you think and online blog would be

better? I do not think I want to hold all of these emotions inside

much longer.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)