The Community Blog

Today we got a copy of Bill's MRI...many new lesions since October, 2006. Again, something we've suspected because of he number of symptoms he's exhibited in the last 6 month.

We joined an MS forum and asked questions...most answers were over our heads, but one person specifically said that one of the areas where there is a lesion is a "red flag" for MS.

So Monday, we see the neuro-ophthamologist, but we already know there are no lesions in the nerves to the eyes according to the other report. However, he is a neurologist also, so we're hoping to get some feedback from him. And hope you can give us an explanation for Bill's blurred and double vision. And his crossed left eye.

I don't have a shrink..yet. First appt. in 2 weeks. Don't have family that will support us for what we're going through. Everyone has a diagnosis, but no solution. And most significantly, we have no friends.

We're so stressed...we're ready to snap. I did a little yesterday after we got home from Bill's 2 hour MRI of his brain, eyes and cervical spine. He did the EEG on Thursday. He sees the neuro-ophthamologist a week from tomorrow.

We made the mistake of looking at the CD of the MRI's. Don't know what the hell we were looking at, but we both freaked.

Then his cousin, 83 years old called and wanted to tell me she thought he had dementia and that it ran in the family and that the whole family was basically a bunch of nuckin' futs. Didn't need to hear any of that shit after all we'd been through this past week. I know her intentions are good and she doesn't believe he has MS, but please keep your uneducated opinions to yourself.

Today Bill had an EEG. He asked if the guy could tell us anything. The tech said he couldn't because it was against the law to disburse any information to the patient and it was up to the doc.

Symptoms change almost daily. With a few constants. Other than the exhaustion and headaches, his eyes are the primary problem now. Double and blurred vision with lights having halos and tinted pink. He asked me to look at his eyes tonight and for the first time I really looked. I saw his left pupil was larger than the right. He said it's been like that for a few weeks.

He goes for MRI's this Saturday. Of the neck, brain and orbits, with and without contrast. If anymore lesions show up, he will get a definitive diagnosis of MS. God, please let it happen so he can begin treatment.

Am I entitled to absolute unbridled anger? Am I allowed to express my feelings that I've kept pent up for almost 6 month? And if I do, how many people will I hurt other than myself?

I hate all of Bill's doctors. All the pompous assholes who won't diagnose him with a legitimate disease/illness because they're too fuckin' scared we'll sue them if they're wrong. They wouldn't be wrong. We know he has MS. We're not stupid. Don't they know we're desperate. He needs to be diagnosed. He needs to begin treatment now. Not wait another 6 months. Or are they waiting until he's totally blind in his left eye and I have to push him in a wheel chair for his next appointment?

I guess you don't understand,
I guess you are afraid.
You can't feel the way I do,
in the void you and your kind have made.
I can not offer you redemption,
I can not make you whole.
I don't know where to go.
I don't believe in tomorrow,
there is no guarantee.
When god created man,
He forgot the warranty.
Belief doesn't come easy,
the truth will always change.
What seemed so normal,
suddenly seems so strange.
Doing just what you're told to do,
you barely even feel.
You barely even differentiate between your fantasies and what is real.
One more plastic person,
faking everyday.

We're doing 'Groups' at uni and one of the experiments is aimed at what happens between groups - learning it through feeling and living it.

The class has been divided into 3 smaller groups, each set the task of developing a group identity, setting grounds rules and communicating with the other groups - THAT'S IT, that's the task. We have to keep a journal of our own covering our observations of what's happening so this will be mine for today.

Last night in my group I watched my own nemesis, it's birth, it's fodder and it's strength and I couldn't feed it, I flirted with the idea but in the end couldn't. I watched 'Us and Them' get born.

People who hack in general are low life scum.
People who hack recovery sites are lower than that.
Recovery sites are places that people go to when they need help, support or just some electron communication with other people.
When that vanishes, due to a hack, these people are left without a resource.
I fully believe that what goes around comes around and that what one sows, one will reap.
Here's hoping that all those operating without a life will acquire one in the New Year.

What's a year without a hacking incident...

Make 2007 count.
For yourself.
For a newcomer.

And for the waste of oxygen who got off dicking around with our databases last night, I'll see you again, motherfucker.

After a long,hard day at work,coming to this forum makes me feel comfortable and takes some of the crankiness away...leaving me only mildly grumpy.But thats about as pleasant as I tend to get some days:)