If you haven’t noticed already there have been some changes to the layout of the NetXperiement site.
Now the Contributor Cloud has some content we have moved that to the front page to allow people to see what only a few dollars will get them. We have added colour to the cloud to make it more visually appealing than the usual “shades of blue” type tag clouds.
We have added a bookmark so you can add us to Digg or your favourite social bookmarking site (or all of them if you like!).
Some upcoming changes will be labelling of the navigation icons, a new site logo and a flash “how-to” contribute.
The Good News -
Squidoo has accepted Foundation 5 Million as one of its approved charities! The Complication -
The Foundation will need to set up its own PayPal account so that the funds can go directly into it rather than going through the one I set up. The Bad News -
Things aren’t going smoothly for me healthwise and I am off to have an MRI on Tuesday. Which is a pain in the bum when I am trying to get things together and moving on the publicity for NetXperiment *growls*
Description: Here is the official info for our first show of the year. It is Saturday January 20th 2007, at Logan Square Auditorium, All Ages, and 21+ to drink.
We will have some fun surprises up our sleeves, a little piglet will come out to play, special guest guitarist Jason Knotek (PIG - In Winter) will be performing with us. This is a Multiple Sclerosis Benefit Show; all proceeds go to local music supporter and friend Jennifer Guest.
Probably not. It certainly wasn’t something that had crossed my mind before I was diagnosed…and I don’t think about having various illnesses now….but for the curious here is a site that can mimic a couple of the many symptoms of MS.
If I had been diagnosed when I first became symptomatic? Yes it would have, and a negative one at that.
It is only recently that somwhat effective treatments have become available. It is only recently that the extent of the disease and the growing number of young people being diagnosed has led to specialist and specific centres for treatment for them. Thank goodness there is this growing recognition and the ability to do something about it too.
If I had been diagnosed 25 years ago, I would have been given the diagnosis, told there was nothing much that could be done, and left to my own (or my parent’s devices). I think that would have been more destructive than the baffled Doctors thinking I was some kind of hypochondriac.
______________________
I remember when the first weird things started to happen I was an athlete and at one of the track meetings Betty Cuthbert came to present some of the medals. I remember people commenting on how sad it was that this woman who had won 4 Olympic Gold medals (and did what no one else has done by winning the 100, 200 and 400m) was now confined to a wheelchair because of her MS.
From the outside looking in I agreed.
But now on the inside looking at that same scene, I will quote Betty’s words back
“I’d love to be able to walk and run and all that. But I don’t think about it. I don’t concentrate on things I can’t do. I do what I can do. “
For a present for a friend when I popped in Multiple Sclerosis to the search for all products ( I usually only look in the books part). I was very suprised to see all sorts of things come up…some have NOTHING to do with MS at all from what I can see. but I thought I would display a few here to help NetXperiment get some funds from outside of the website.
Item 1
Here in Australia this would be very welcome! At the moment it is the middle of summer here and we have had some very hot days. I think I will be ordering one of these to put on when I get in the car.
item 2
Same but for the head…
Item 3
OK with my weird sense of humour this made me laugh. I am sure it is a great read but it tickled me that this had been written!
Item 4
Got to throw in the big names! If they can do it then so can we.
What’s it like being a medical student with multiple sclerosis?
Jenna Louise Duffy shares her experiences.
Why is it that when sometimes your life seems to be running smoothly, and you have so many plans of how you would like your life to be, something bad happens?”Jenna, you’re not a child anymore now: you’re 16 going on 17, and I think you are at the age where you can deal with certain things…” “Blah, blah, blah,” I thought as my consultant droned on with the same dreary comments, and I stared out of the hospital window.
These appointments were becoming a bit tedious. It was like having déjà vu. I stared out of the window. I kept thinking how excited I was about my plans for the weekend. My exams were approaching, and I just wanted to relax and have fun with my friends. My parents and I had come in for my routine appointment at the University of Wales College of Medicine. I had been called in for my appointment 10 minutes early, so my father was still outside parking the car. I had been unwell with “unusual symptoms” at 14 years old.
Magnetic resonance imaging and lumbar puncture had confirmed lesions on my brain. The doctors suspected a virus or just a one-off illness that could not be explained. I therefore had to attend appointments every six months “to keep an eye on” me. I was never given a diagnosis.Since then I had been free of symptoms. The initial symptoms of vertigo and optic neuritis I had had at that age had disappeared about four months after they started.
That is, until two months before my routine check-up at 16 years old. I had been worried about my AS levels, and trying to complete my application form for university so that it was perfect. My dream from 14 years old was to be a doctor. I knew I would have to make a good impression.
One weekend while I was revising I began to feel tremendous throbbing pains in the soles of my feet. I put it down to wearing ill fitting shoes. Two days later, the pain had been replaced with numbness and tingling that had now risen to my knees. My parents were concerned. Each day the numbness rose up my limbs, until one morning I awoke in a panic and pool of sweat because I thought my legs had disappeared.
The numbness had risen to the umbilical level. The embarrassment and anxiety of not being able to feel my feet in my shoes and feeling that my trousers had fallen down was really getting me down. It would send me into panic, frantically checking they were still there, no matter where I was, and who was watching. I continued the week as if I was in perfect health, stubbornly ignoring this problem as though it would disappear.It took days to get even an emergency appointment, but after a while I visited my general practitioner.
He referred me immediately to the paediatric consultant I have visited since age 14. Because my routine appointment with him was close anyway, the consultant felt no need for an emergency appointment. Even though everyone around me was worried, I felt as I did aged 14. I was naive, not at all concerned about what was wrong with me. I was in a daze, on a cloud where no one could touch me. It is hard to explain how you can feel totally oblivious to what is happening to you, even when you know it is serious. It is almost as if your brain switches off to all the negativity of the world and then drugs you with a happy pill to enable you to cope.It was in this state of enlightenment that I received my shock.
The last couple of nights have seen my partner and I out on a high spot near where we live checking out the latest, and brightest, wanderer into our view. Comet McNaught (yay for Coonanbarabran astronomers) has been very visible just after dark, but alas low cloud over the Blue Mountains has meant that seeing it actually “set” has not been possible.
But fear not, here is a movie we took tonight of the comet for those that have missed it.
The tools used were a pair of 12 x 80 binoculars on a tripod and a Sanyo Xacti CA6 digital video camera. ANd for all you visitors to this blog to see this, please head on over to my MS donation page, the Great NetXperiment to contribute to finding a cure, and cause for this baffling disease.
Things have been on the back burner a little for NetXperiment as some health issues cropped up that needed investigating. As per the title, it has been confirmed that I don’t have a brain tumour. *cheers*. I do hope the headaches etc go away as I am a grouchy grouch at the moment after the weeks of “discomfort”.
So on with the blogging and back to the fundraising!
You can tell from my blog, I like video-type information clips (saves having to have an attention span that can last 2-3 pages of text online…do you have problems reading large amounts of text on a computer screen? I know I do…maybe the newer generations won’t). So here is a clip that I found on a myspace page (caution: has some loud music embedded on his page) . I know I have seen it before somewhere, but as the clip is not attributed I can’t do much more than link to the source. If you know where this was from originally please add a comment! Good for explaining to kids or others what MS actually is.
