I needed time to heal

OzMS Logo

 I was getting many emails from people asking why they couldn't join OzMS, I finally wrote a very brief explanation for those who were not regular visitors or are new visitors to the site.

It took me a while to write this as I needed time to calm down and think about things, I was very disappointed that I had to close OzMS indeed I was quite angry, I knew I couldn't write the text below while I was feeling the way I was. Anyway I am now at peace with the decision I had to make for my own sanity and health, I know I did the best that I could.

For those who read this and wouldn't have a clue what OzMS was, it was a Multiple Sclerosis Peer Support Community, it ran for about five years I guess, it was predominately Australian based but we had quite a few International members as well, it was quite popular for a niche site of it's type, so it took a couple of months to write the following on the front page.

The explanation!

I thought I better get around to writing something on the front page of OzMS, I want to make this brief but I have a feeling it won't be :)

OzMS only ever had one owner, one technical guy, one article writer, one information writer, and much more, everything that happened on the site from a management perspective was down to one person, I also had to teach people how to use their computer as well at times. I naively thought, as time went on, I was bound to find someone who had the skills I required to help me with running this site on a day to day basis, although I had one offer to take the site over it didn't seem that serious an offer, that was quite a while ago now so it's irrelevant to this text, suffice it to say I needed someone who could visit daily, in fact be the type of person that was online at the computer doing whatever else they did but checked in to OzMS regularly during the day.

I had some good moderators, but I needed dialogue from them as to what was going on with the site, what they were doing, what they were editing and why so we could all be on the same page as far as moderation tasks went, it rarely happened, so when disgruntled members would occasionally take issue with some moderation decisions I could have give them an answer and explain why their post was deleted or edited, I was in the dark, it was very frustrating. I was laughed at when I said we need a minimum of about ten moderators, moderators that actually checked the site and fixed things instead of leaving it up to others, usually me, alone.

I would even go as far as ringing people who needed help, I went above and beyond for OzMS, it didn't seem to make a great deal of difference, I once again naively thought that people would understand that I was working behind the scenes so hard to make OzMS a worthwhile place to visit and receive peer support from members who were going through exactly what they were, I hoped people would be motivated from my lead, we would often have new members joining and asking heaps of questions but when they had every question answered they were never to be seen again unless they had more questions of course.

OzMS was a niche site it was never going to be anything else, it needed members to return and help with the peer support, helping to answer members questions, a small percentage did more than enough, but of course people get burned out answering the same questions over and over again, we had two ways you could search OzMS, the in built site search and Google search, I'm not exactly sure how often they got used.

The main problem though was I needed another technical person to help with the backend tasks, as my MS progresses albeit slowly, luckily, I was finding that the old brain was not as easily able to process problem solving, hours of reading to find how to fix Database errors, backing up the site regularly, I needed someone a lot smarter than me at the very least a consultant for want of a better word to help with the problems I just couldn't get my head around. I am positive this would be very little work for someone who had the skills, I did ask anyone who mentioned they had an IT background if they would be interested in helping, alas, I had no positive offers of help, that's life I don't blame anyone, but still, it is a shame.

If you really want something to work, join in, help out, be a part of the solution, don't be a part of the problem, so that's a very brief explanation and really I am over it, I was extremely disappointed at times with people and my own failings, but I take comfort in the knowledge that some people really did their best to help out and that OzMS was very helpful for some members and they appreciated the support they received by returning and helping other members with their problems and questions.

Personally I will concentrate on my health and writing the odd blog, OzMS may continue, but only as an information site about Multiple Sclerosis.

Let's hope for a Multiple Sclerosis Cure soon!

OzMS tidy up needed

I need to write something for the front page of OzMS, I am getting the odd email or two asking why they can't join, or why they can't sign in, I need to address this. I need to have a look at how I can put it into archived mode at the moment it is just turned off to new sign ups and logins, the front page should just be a static page now with some information explaining about why, and some links maybe.

I will have to wait until the brain has a good day and when I'm not fatigued, these days are less prevalent, but I still have good days. I am saving the replies I make to people that are emailing me so I can use bits when I write something for the front page of OzMS.

Teriflunomide - Oral drug trial - part 02

I have now been on the trial for two weeks, I went for my two weekly check up today, just a blood test and urine sample, no neurologist check up, two neuros do those standard tests that most of us would have when we visit the neurologist, eye test, walking test, the finger test to your nose, run heel down shin etc., none of that today, was in and out very quickly.

Not a lot to tell because obviously the blood test was for the two preceding weeks, so next time I visit I might be able to find out how the blood test was. I did find out why I didn't have a lung function test, the nurse said she wasn't sure, but the trial I am on doesn't require it so Deanna may be on a slightly different trial to me, that requires a lung function test, anyway I didn't with the trial I am on.

When I was there two weeks ago I asked them if they could check my vitamin d levels as I have been taking one "5000 iu" vitamin d gel caps every day so I thought it may be worth checking my levels and they were taking blood anyway, it was just an extra vial. My Vitamin D level was 131, so it's at a good level and seems to indicate that the gel caps are working to raise the levels.

How have I felt since being on the drug (or placebo)?
I have felt like I have had a little more energy since I started taking the pills, but that's about all, who knows it may all be in the mind ;o)

That's all for now, as I said it will be interesting to see what the results are next time.

Cheers

Teriflunomide - Oral drug trial

Well this is the second trial I have taken part in, I have been going through the screening process for the past few weeks, which in my case has included blood tests and a cat scan and the usual MS tests they give you, I was accepted into the trial today and was given the pills, three months worth for now. I guess my main reason for doing this trial is because it's a trial for oral medication, even though I overcame my needle phobia with the last trial, I honestly don't think I could handle giving myself injections, to me that would be a massive step in overcoming the whole needle phobia phenomena and I would probably just not take the medications if I had to inject myself. If I ever become a diabetic I will cross that bridge when I needed to (from a needle phobic point of view diabetic people have my total respect ;) ).

I will also take part in an additional optional sub-study involving pharmacogenetic testing, put very simply, it will help work out who this drug will work for and who it won't from a blood test, I guess it's similar to that Betaferon story about a test for that drug that will determine whether it will work for a particular person from a blood test. It's all about your genes!

Normally they do a ultrasound on your pancreas (to get a base reading), but they had trouble finding mine, that's why I needed to have a cat scan, the trace they inject into you for the cat scan makes you feel like you wet yourself quite trippy but not too bad at all. The trial goes for two years, Deanna's blog about this trial has more information, no use reinventing the wheel

I didn't have lung function tests like Deanna did though, don't know why and I forgot to ask today, must remember to ask next time.

Anyway I will update as the trial goes on!

Cheers ;o)