Erika`s procedure in Poland

[Drury]

Erika,

You are such a dear, kind, brave, courageous, caring person. Like 1eye I came to this site just over a year ago and have followed your journey and really hope that you will start to feel better very soon.

Drury

[ErikaSlovakia]

I apologize a lot but I just must vent.
I NEED MY VISION BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is so cruel
Erika

[HappyPoet]

Sweet Erica,

I'm so sorry your vision is giving you so much trouble. It's cruel and completely unfair! If Optic Neuritis eye pain is part of the trouble, Levetiracetam works great for me.

You may already be aware that there are settings/preferences available on most computers to help with vision problems; for instance, my computer is set on a dark setting because the normal bright white light of the monitor hurts my eyes.

There are other settings, too, such as large font sizes which help with my blurry vision and tunnel vision -- I can read for longer when the text size is larger.

Please keep posting, Erica.

[ErikaSlovakia]

Of course my screen has been larger, I use all possible tools to make e.g. web sites bigger, letters larger. I bought bigger TV last year this time, I can even make that screen 1x, 2x or 3 times bigger.
I am using my left eye right now because I spent more than one hour reading huge text and my vision got really worse.
I will not get Levetiracetam I think because anyway I take 1200 mg Carbamazepin a day. It is similar drug. If I do not move my eyes at all the pain is really very little.
Just my left eye has not been good for reading and I cannot read with my right at all these days. Well, I will have to wait couple of weeks or couple of months.
And do not tell anybody but I am saying all dirty words in all languages I speak - just in my mind. Talking makes me very weak.


Well, I can still use the toilet by myself. Why don't I simply die and end of story? What is this good for? I don't get it.
Erika

[Johnson]

Dear Erika,

Oh, oh, oh...

Something I did not write in PM: Grape Seed Extract is a very powerful anti-inflammatory that is natural, and has no side effects at all. You can take large doses of it, and the very worst thing that can happen is you might become allergic to grapes, but I have used it for years - at massive doses, and I can still drink my red wine without allergies. I have stopped optic neuritis with Grape Seed Extract and large amounts of beet and carrot juice.

Grape Seed Extract is not expensive. Make sure it is Grape SEED Extract, and not grape extract (which does nothing for ON.)

We all know the feeling of just wanting to go to sleep and not wake up ever again. It is so terrible when we can't even read.

Hold on tight Erika. We will figure this out.

We all love you.

[HappyPoet]

Oh Erika, you're so cute. It's O.K. to use "dirty" words in any language in your mind or even out loud if talking didn't make you "very weak" which makes me wonder and worry if you're getting enough oxygen or if perhaps you have an undiagnosed pneumonia? Can you get your breathing/oxygen level checked?

While I definitely have sometimes felt the way you're feeling now, I always felt a bit better when a friend would say, "You wanting to "simply die" is NOT a situation I can stand by without trying to help." So my friend, Lucky Girl, let's share our pain and cry cleansing tears together. For our fears. For our pain. For our loss of sight.

And after we dry our tears, I want to tell you how the use of an antidepressant, Cymbalta, helps get me through these kind of rough patches. I've learned that I cannot handle this disease without an antidepressant. Can you discuss antidepressants with any of your doctors? Cymbalta also helps with my neuro pain, a BIG plus!

I will be praying for all your vision troubles to remit quickly.

[1eye]

Hey, isn't this off-topic?

Isn't there a neighborhood suicide-watch forum around here? I can think of no other response other than humour, even though I know it ain't funny:

all I can think of is Spike Milligan saying life is a chronic disease cureable only by death.

Even that only helps as long as I keep laughing.

Erika, I will be very mad at you if I don't get the chance to sing you that song.

I can play it now, a bit, all the way through, with hardly any problems.

I won't spoil the surprise, but all these songs are ones I used to know on guitar...

another one I was just trying out was Free To Be by Bruce Cockburn

Got no social graces.
Never know my place.
One thing I am sure of,
you can't judge a man by his race
birth don't come easy,
freedom doesn't come cheap
rules and worlds get swept away
while you waste your time in sleep -

grow up you.
Grow up, me.
Grown together, free to be.

There's music in the forest,
children laugh in the schoolyard,
on the skid-row of the spirit,
hear the ranting of the western guard,

Why don't you cool out
Can it be so hard
to love yourself without thinking
someone else holds a lower card

grow up you -
grow up me
grown together,
free to be.

Wired to the switchboard,
always on the move
Things we love to cling to
But there's nothing we can prove

You can only deal with
What's before your face
And the life you're given's no use at all
If you burn it up in hate

grow up you -
grow up me
grown together,
free to be.

Please let me inflict my singing on your grand-children. They're less critical than you would think.

[ErikaSlovakia]

Sorry, people, thank you for your posts but I am not able to read it. I am simply able to read very, very little or nothing.
The more I force myself to read the worse I see - like it happened to me yesterday.
Erika

[ErikaSlovakia]

No, doctors cannot do anything. Moreover I would refuse chemotherapy.
It only needs time. Either it gets better or not.
I still have some grapeseed extract.
Thank you for all your posts
Erika

[Cece]

I hope it gets better for you.

I am going to try grapeseed extract too.

[maynaka]

Erika,

I just wanted you to know you're in my thoughts and prayers.

M

[zinamaria]

Sweet sweet Erica..I am so slow and had no idea this was happening for you, forgive me!!!
You were the very first person to respond to me when I came onto this site, the VERY first person, Dec 2009. I HAVE NEVER FORGOTTEN YOUR WELCOME TO ME. SO I AM THANKING YOU NOW (I SAID I WAS SLOW!)

WHEN I HAD A SERIOUS RELAPSE AT THAT TIME I TOOK STEROIDS, ONE AND ONLY TIME AND IT STOPPED THE ATTACK, THE EYES RECOVERED. HAVE YOU CONSIDERED THIS?

WE ARE ALL THINKING OF YOU, SWEET SWEET GIRL! AM I ALLOWED TO TELL YOU TO HANG IN THERE?? WE'VE, ALMOST ALL OF US, HAVE BEEN THERE BEFORE, IT WILL CHANGE.

[blossom]

HI ERIKA,

I WAS JUST CATCHING UP HERE--SO SORRY TO HEAR WHAT IS GOING ON

WITH YOU. I HOPE THIS PASSES SOON.


THIS TIMS GROUP CAN'T BE BEAT. LOOK YOU GOT 1EYE GOING TO SING TO

YOU--YOU GOT HAPPYPOET COUNSELING--YOU HAVE HEALTHY TIPS--YOU

HAVE COMPASSION--AND UNDERSTANDING...WE ALL TRULY UNDERSTAND-

BEEN THERE DONE IT. WHERE AS I'M SURE YOU GET THE SAME THING FROM

SOME PEOPLE YOU KNOW --FIRST THEY SAY YOU LOOK GOOD-THEN MAYBE

ASK HOW ARE YOU DOING-YOU TELL THEM MAYBE A FEW THINGS "AND THEY

SAY I KNOW WHAT YOU MEAN" THIS DRIVES ME NUTS!!!

BUT HERE WE DO KNOW WHAT YOU MEAN.

AS FOR CURSEING IN YOUR MIND--THESE ARE MANMADE WORDS THAT

HAPPEN TO BECOME CURSE WORDS THAT IT SEEMS WHEN AT THE PEAK OF

EVERYTHING I CAN'T FIND ANYTHING ELSE THAT FITS. I LIVE ALONE SO I

HAVE SOME DOOZIES AND IT GOES STRAIGHT FROM THE MIND TO THE

MOUTH.

I NEVER KNEW I COULD PRAY SO SINCERELY AND CURSE SO HARSHLEY AND

SOMETIMES IT CAN BE IN ONE BREATH. MS HAS TURNED ME INTO A MULTI-

TASKER. I'VE SINCERELY THOUGHT OF WRITIMG A BOOK TITLED" CRIPPLED

CURSE WORDS" I THINK WITH ALL THIS MS CRAP I KNOW I HAVE CREATED

MY OWN PERSONAL VERSION THAT I DOUBT MANY COULD MATCH.

SO LITTLE GIRL, WHEN IT COMES TO DISTANCE THERE REALLY ISN'T WHEN

IT COMES SOMETHINGS LIKE PRAYER , UNDERSTANDNG AND LOVE AND YES

CURSEING TOO. MS CAN CHANGE A PERSON AND NOBODY UNDERSTANDS

UNLESS YOU HAVE IT.

SO VENT WHEN NEEDED.

[ErikaSlovakia]

...
WHEN I HAD A SERIOUS RELAPSE AT THAT TIME I TOOK STEROIDS, ONE AND ONLY TIME AND IT STOPPED THE ATTACK, THE EYES RECOVERED. HAVE YOU CONSIDERED THIS? ...

Of course I have considered this. I am just scared to death to do it. The problem is I get really worse with steroids. I remember my 2 relapses in 2008. My eyes were OK when I entered the hospital. After couple of minutes of IV steroids both my eyes saw only milk - as I call it.
If I do it now - my right sees dark gray curtain and my left will see only milk for couple of months. Now I see at least something.
My arms are getting weak - I hate the feeling - all the time is somebody injecting poison into my arms.
Everybody expects and hopes for me to get better. The reality is that I am getting worse.
It would be better if you also accept my reality. I understand people only want to hear happy end and nice success stories but life is different. I am sorry I disappoint you but I refuse to lie.
I think I will be able to post my report after 18 months next week if nothing really worse happens.
Erika

[zinamaria]

HI ERICA,
I DID NOT KNOW YOU HAD TRIED STEROIDS.

I AM NOT SAYING TO YOU THAT I WANT A 'HAPPY' ENDING. I WOULD NOT WANT YOU TO LIE ABOUT WHAT IS HAPPENING WITH YOU. I AM ACCEPTING YOUR REALITY, THAT DOES NOT MEAN I HAVE TO LIKE IT.

YOU DO NOT DISAPPOINT ME BECAUSE YOU ARE TELLING IT LIKE IT IS AND THIS IS NECESSARY.

IT IS NEVER EASY FOR ME TO HEAR OF ANY ONE OF US SUFFERING, AS YOU ARE, AND COMPASSION IS NOT THE SAME AS PITY, AS NOT ACCEPTING WHAT YOU ARE GOING THROUGH.
IF YOU ARE GETTING WORSE, THAN YOU ARE GETTING WORSE, AND I HAVE COMPASSION FOR WHAT YOU ARE EXPERIENCING.

Z