multiple sclerosis

multiple sclerosis

Bullies, Forums and Alligators

I started blogging in 2003.  I deleted my original blog and started this one Dec. 3oth, 2005. One of my first consistent readers and commentator’s was drumsnwhistles ( Karoli of odd time signatures and Bang The Drum). I have had the pleasure of knowing her as best as one can via email and blogs.

Karoli blogged a while back  about a case where cyber bulling went way to far and resulted in the death of a 13-year old named Megan hanging herself in her closet.  While Karoli is an honest blogger I have had my share of dishonest ones.

I even stopped blogging here for awhile after of few weeks of constant harassment over a post I made about a young man who was shot to death in my neighborhood.   No big deal until someone knocked on my door -yep my front door of my home!  We are never anonymous, although I admit I never really tried hard to be so.

Any of us, and many do I believe, have some sort of system set up to keep track of hits, where they come from, what was read, and all sort of other stats. Some of us do it so we can track what people found interesting.  All though I am not sure why I care? I guess it is some deep seated ego type deal because this blog is not set up to sale or promote anything.  It is just a place to vent and share.

Ok, hang in there I really do have a point here somewhere.

The first open use  cyber bulletin  board  I remember using was way back when ( hear my bones creaking here)  . . . a Prodigy one that was accessible via a V.22 1200 bps modem. It had a simple menu with four items and you had to wait a day for any reply to be posted.  It posted on a board for recovering alcoholics. And, here is the point, there were “trolls” and “bullies” then and there are “trolls” and “bullies”  now. They just have more available means and mediums to flourish in.

Recently I have joined a few multiple sclerosis forums. I don’t post – I lurk. Why? I do not choose to hang myself out there and be annoyed by the trolls and bullies.  I have learned a lot reading through the posts. Some forums are better moderated than others and I have to apply some common sense in distinguishing the facts from the B.S. .

I swear, I can think someones blog post is directed at me when I have never even posted on their blog LOL! And sometimes the emails can be illuminating. When one blogger emails about another behind their back . … it can go on and on. I do not get it? I don’t use instant messaging anymore either after a fiasco involving a person cutting and pasting my name out of one IM and pasting in someone elses nasty stuff.

Lisa at Brass and Ivory posed this question in post:

This opens the door to the question – what are some dangers and drawbacks to online disease-specific communities and forums? what do you do when bullying, stalking, and harassment get out of control?

I am not in the “in” crowd of the MS cyber community but it seems bullies are a topic being discussed.  Merelyme has a post on subject and a list of questions that provoke thought on the subject.

After stopping blogging here for a bit I can not say that the ramifications of blogging honestly is without drawbacks but after a bit of a reprive and thought I decided to start up again.   As for the forums I am not sure.  It really is silly that I could allow some name, a moniker,  upset me.

Ok, back the beginning.

If my cyber friend Karoli were to out of the blue type some nasty comments about me I would be crushed. Because, it would come out of the blue, I would be unsuspecting,  it would shock me,  hurt me.  When I open myself up and share my thoughts with someone I go in with the expectation that they are doing it for the same reasons with no ulterior motive.  If someone that my only knowledge is from what I have read on their blog or they have posted on mine says something crappy I still get offended but my expectations are lower. Does it sting? Yes.

Here this is my blog, I am the moderator.  Any forum is only as good as it moderators.

I stop my rambling on with an article Online Forum Etiquette: How to deal with a forum bully.

“The objective  is to thoroughly analyze all situations, anticipate all problems prior to their occurrence, have answers for these problems, and move swiftly to solve these problems when called upon. However, when you are up to your ass in alligators, it is difficult to remember that your initial objective was to drain the swamp.”

Just remember you are never as anonymous as you hope online and words do hurt and there are alligators out there waiting to snap.

Space – Spirit – Stem Cells

stuffed toy NASA bear in space suit

Ground control to Major Tom:
Your circuit’s dead, there’s something wrong. …
This is Major Tom to ground ]control:
I’m stepping through the door
And I’m floating in the most peculiar way . ..
And the stars look very different today
Here am I floating round my tin can, far above the moon . …
Planet Earth is blue and there’s nothing I can do.

Sometimes I feel like my body is a messed up biological vehicle. Just like poor Major Tom it carries me around without any certainty, with an unpredictability liken to a space capsule off course. Multiple Sclerosis has made me feel like I live in an alien.

I wish I could step through a door and float amongst the stars and meld with atoms and  molecules. A place where the elements of this earth would not limit the  spirit that is within me.  I would  move faster than the speed of light as my soul followed its destiny.

Ground Control to Kmilyun:
All the matter on Earth is star stuff.

Well dang – zap back to earth and this crazy thing we call life.

Of note and hope from Reuters : FDA allows first test of human stem cell therapy

Stem cells have the potential to replace the function of damaged nerve cells – emmm sounds like a good thing. All moral and religious issues aside – it offers hope in the hunt for a cure for Multiple Sclerosis and many, many other diseases and conditions

Off to the land of dreams now where I can float through time and space . …

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End of the Arse

Some of you know me via this blog ( as best as you might just reading what I choose to share) and some of you know me in person. Those that really know me are aware of what a stubborn pain in the arse I can be.

I have always been a sort of anti drugs type person. When I had surgeries on my wrist years ago I was given Vicodin for the pain.  I found the bottle the other day when I had a headache that would not go away I went hunting and found over half the pills still there. Relax, I did not use them. The date on the bottle? 1994.  I am not a sufferer, I just hate drugs. I decided I had better go through the cabinet and get rid of all the outdated junk in there.  The proper dispossal of prescription drugs – well that is a whole nother story.

I am leery of  over the counter and prescription concoctions. I am one of those that reads all the warnings and side effects.  Once I had to take Cipro and I swear I thought I was gonna die. It made me feel like my insides were getting eating up by some evil thing. This reaffirmed my stance on the evils of drugs. In fact I really never got sick until I took that crap.

My doctor persuaded me to take lovastatin and small dose aspirin to ward off another stroke and I embraced  the wonders of thyroid meds. But, I am sure she felt like she was pulling teeth. I even swallow two vitamin pills each day now too.  I still mutter and crumble about it.

Then along came this you have multiple sclerosis deal.  It is not a fair deal.  Cat Stevens Miles from Nowhere lyrics somehow fit my mood right now.  I found a video from a live concert in 1976 – the year I graduated high school.

[youtube]http://www.youtube.com/watch?v=lNId6M4SSNk[/youtube]

Well the neuro prescribed some neurontin the other day and my primary gave me some new vicodin a few weeks ago. I read all the possible side effects, yep, I am rather arse about it. I even look at the chemical compositions too. Just nerdy arse stuff I guess.

I have been thinking about all this lately.  Mostly because I lay trying to go to sleep thinking anything and everything.  A less  nerdy arse person might get the drift but I am a slow one apparently.

What I came up with is not great unheard of revelation, no ground breaking here, but, my pea little brain finally got the message that like DUH. Why not take the silly pills?

So that is my big revelation of the week.  I took the neurontin before going to bed and all be danged the stuff worked. In fact, I am suppose to take it before going to sleep, but with my feet and hands not feeling the burning, freezing, and zapping,  I so enjoying staying awake LOL.   The vicodin took care  of some the other pains last week when I gave it a go.  I find it interesting how one zaps out one pain and the other a differnt type.  I think I am loving the neurontin.

I can look back and find lots of symptoms and problems I have had for years, I just never really complained much. And, when I did I usually got the your depressed or faking it from the Dr’s. so I sort just forged on with my life.

I am now gonna squeel like a little piggy.  I write everything down now. Things I thought everyone experienced  that I wrote off to getting older – well, turns out not to be so.

I can not make the MS go away. But, I sure can try and not feel like what comes outmy dogs arse’.

I hereby announce my proclamation of “End of Arse”.

I will try not to be such an arse about it.

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Keeping Busy – sort of

Not much new around here but I figured I had better type something before you all thought I had disappeared again.

Went to my neurologist appointment yesterday – not sure why I had one? it was made by the doctor.  I guess I am suppose to check in.  I don’t really see the point I guess unless I have a specific problem or question.  Most questions get the dunno or could be responses LOL  I appreciate that the doc does explain things, answer questions, and has no problem saying “dunno”.  I have more problems with the right leg now – duh – and got a prescription for neurontin (gabapentin).

I did bring a list of questions and sort of understood most of what she said.  I will have to email to clarify some things that kind of flew by my mind and I am such a pain in the arse when my other half says “no she said this not that”, especially when it is something I did not wish to hear. I think she said she was leaning towards I was in a secondary stage but the other half is not sure either -s0?  She was very ok with my not wanting to try the disease modifying drugs, in fact, she said if I were younger  she would push them, but, because of my age and other factors she was not inclined to.  While I was in the building I had my scheduled blood work done and got a flu shot – ouch!   I am such a sissy.

I started a new page here on the blog to keep track of what I have been reading.  I started a table to enter the info in. It now depends upon my remembering to add the titles as I finish each book. Ummm – we shall see . …

I have a few friends that I borrow and loan books with.  I get a back and loan a bag. I most enjoy the books I purchase over the borrowed because I love to read in the bath tub.  I just can’t bring myself to take the chance of dropping someones  book into the water.   I did give my mom all the Nevada Barr paperbacks so my collection is a few books smaller.  I know I should just go to the library but – well I have no good reasons really other than I like having my own books, hardbacks are hard for me to hold at length, and I read fast and don’t like returning them.

Well off to play with wordpress child themes again – I might use one  here too – they are a sure way to not have files overwritten by updates  and stifles the  screaming  when an errant stroke of the key or flight of the mouse sends code into lah lah land .  Then I am off to whine some more about my sore arm from the shot and start another book.

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