Thursday, April 29, 2010

May 5th CCSVI Demonstrations

May 5th I'll be heading to Toronto for the CCSVI demonstration at Queen's Park (Provincial Parliament). It's One of many rallies across Canada to raise awarenes of MS and the "liberation treatement" as it is known.
Here's a list of cities that are having demonstrations that day.

Hope to see you in Toronto!

I'll post some photos and a summary of what happens that day . I'm looking forward to it.

Saturday, April 24, 2010

Going Greener

Cool and overcast today. It was all I could do to psyche myself to go out.

On my way to do a few errands I passed the Hill Street Community Garden.  For a small fee you can sign up for a garden plot to use for the summer. I was jealous of the people there getting them ready to plant. I really wish I could have one.  I use to years ago when  I lived  in Toronto and it was so nice to grow my own vegetables. Nothing is tastier than a home grown tomato. I even grew corn one year and it was delicious.
I tried  cantalopes and they were sucessful, but I never got to eat one. The raccoons beat me to them. 

Ah well, no point in me  even trying to have a garden plot,  because I know I simply don't have the strength to do it anymore. I 'll stick to having  just a few tomato plants in pots in my yard and an herb garden. Herbs are very low maintenance and do well in containers.  Fresh chopped parsley and chives on a baked potato Yum!!

I had to pop into the local  super market. They have good maple syrup at this one and since it is the season,  I thought I would treat myself.  Looking forward to crepes with warm maple syrup tomorrow morning.

While browsing around I saw a "green cart", a small bag on wheels to pack your groceries in. I gave it a test run and then decided to buy it. It really is very good. Not like those annoying bundle buggies that always tip over and are hard to steer.  Easy to open and close, with a good set of wheels.  I bought several items and it was a breeze to cart them home. I guess my only complaint would be that the handle should be longer, but I think I can adjust it. Have to take a closer look at the thing tomorrow  to see if I can.

I also bought more cold packs to help control my crazy heat waves.   They had a package of them that came in long strips that you can cut to whatever length you want.  I kept them long and now I just drap one around my neck to cool off. It works great!

Otherwise I haven't done much. I felt really tired and weak today.  I hope I can rally tomorrow and get out to do at least a bit of gardening.

Thursday, April 22, 2010

Tired, Sweaty, and Stinky

So tired, I couldn't even remember that I had a shower first thing when I came home from work and No I haven't had any THC  since  last week.  My weed supply has run out.

I have been having the worst hot flashes.  I  wouldn't  mind them so much if they didn't make me sweat profusely and stink  bad.  I have to have a shower in the morning and another in the evening, everyday. Imagine  an overweight guy, on a chain gang, busting rock in the hot sun. That is what I smell like !!   I smell like a  man ; very weird. I keep a supply of cold packs handy and they really help keep these nuclear meltdowns at bay.

My last post had Niagara pictures. I took a vacation day Tuesday and decided to hop on the casino bus. This one took me to a different casino than last time. I paid $10.00 round trip and they even threw in  a free buffet lunch, which was surprisingly good.   I wonder how many times I can do this before they figure out that I don't gamble? Somebody suggested I throw a few bucks in a slot machine next time, so I might do that.  I know I won't get hooked because I find gambling very boring. Even today, I passed on all the lottery pools at work for Friday's  $41 million jackpot. I just don't care.

Oh! all the seniors that make regular trips to the casinos. One women telling me she goes to Niagara a couple of times per week and then hangs out at the Flamboro slots on the weekends.  They spend a ton of money. They must do, for the casinos to provide these bus trips and free lunches. Seriously, I'd like to stand at the door and collect money from them for some worthwhile cause. I would say since they don't really need the money, they can spare a few bucks.

The sad part to me is they don't even go outside to check out the falls. Here we live near one of nature's wonders and the gamblers don't care. I know that casinos have done nothing to restore the local economy as was hoped they would.  The money stays in the casinos.  There's no turning back either. Governments are hooked on gambling money, although I'd love to know what they  do with it.

Anyway, I had a lovely day and got my weed seeds that didn't sprout,  replaced for free.

Tuesday, April 20, 2010

Niagara In Spring

What a difference a couple of months make. I'll post tomorrow about what I did at the Falls and the different casino bus I took there.  Have to get ready for the dentist in the morning Yuck!!

Sunday, April 18, 2010

Drug Reform in Ontario

Here is one of the better articles concerning drug reform in Ontario.

  Ontario's Liberal government wants to cut reimbursement to pharmacists for generic drugs.  The pharamacists are fighting back with full page ads in the news, threatning to cut service, and close drug stores.

I see these as idle threats. There is simply too much money to be made, even if pharmacists get less money for generic drugs.

The pharamcists keep talking about all the services they provide. Give me a break. They throw some pills in  a bottle and give you a computer print out of  the  drug facts. It kills me when they ask you questions about your prescription. Do they really think that people want the entire population of the  drug store, which is more like a mini  department store, to know what drugs they take and why  ? Thanks but my doctor already told me all that stuff and you would just fib like he does about how wonderful the drugs are.

Drugs are the costliest part of healthcare spending. Not only do we need to control costs, we need doctors to put away the prescription pad and for pharmacists to stop acting like they are doing us a big favour selling us this crap.  


Wintery Weekend

Return to winter this weekend, once again . Friday I was in t shirt and sandals; today in my wintercoat.

Total fluke that I went to a garden show yesterday. I was in a rotten mood and decided to push myself out the door for a walk. It took a good two hours of mind games before I did it ( "Go for a walk", "I don't want to",
"You must". "No", "Go anyway", "OK I will") I headed in the direction of Dundurn Castle, figuring I could at least go in the gift shop and browse the postcards as an excuse to warm up.  Then I heard the cashier chatting with a customer about the garden club and the show " down the hall, to the left, and  more upstairs as well".

How could I resist? It was a small exhibit, but a wonderful show. I have photos of it I would like to share, only I don't seem to be able to download them from my phone camera. Damn technology!! They really do need to have standards like they have with plumbing fixtures and electrical components. Why are there so many different size/shape of USB connectors? And I always thought the selling point of USB was that you could "plug and play"   Yeah, Ha Ha!! Play, meaning waste precious time  fiddling with things that work one day but not the next.   And don't give me that"you're an old lady" routine. As a consumer I should be able to use all the gadgets I have, without the need of a degree in computer science.

I have installed sinks, ceiling fans, electrical fixtures, laminate floors. Have assembled  barbeques, desks, bicycles, and all the other assorted crap than comes in box with a little hex wrench and instructions that were written in some foreign language, translated in to another foreign language, and then into English.  Configured more than my fair share of computers  ("Mom" " Auntie" the computer won't work!!").    So I know my way around the do it yourself world.
Technology Nerds, listen up! Come out of your parents basements and live in the real world with us regular folks!!

Enough of that rant and back to the garden show. All I can say is I admire people who have the patience to grow one perfect plant and then share it with us. Thank You for feeding my soul.

Pictures to follow. Stupid phone

Thursday, April 15, 2010

The Web Forum on CSSVI

Sarah Palin was in Hamilton today for a charity fundraiser. Enough said about that.

Yesterday I watched the web forum on CSSVI. featuring :

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
Dr. Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY
Dr. Andrew Common, Radiologist in Chief, St. Michaels Hospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology & Director of the MS Center at Mount Sinai, NY, member of the AAN Board 
I learned more about veins than I ever knew!
The talk centered around the results of  research of Dr. Zamboni and Dr. Zivadinov regarding CSSVI and MS. In short CSSVI, is a narrowing or distortion of viens in the neck which restricts blood flow from the brain.  All the participates also discussed the "liberation treatment" as it is know; surgery to insert an angioplasty ballon or stent in the neck vein to increase blood drainage from the brain. 
 Lots of medical research stuff I couldn't understand but otherwise the discussion was very positive, very encouranging. The forum was extended an extra 15 minutes to take questions from the audience and  the web.  7,000 questions had been submitted prior to the conference!

 All the doctors agreed that if you decide to have the operation you should do it as part of a clinical trial and not  outside of one. So don't buy a ticket to Poland just yet. Dr. Zamboni did say that an exception could be made for a person  who is declining and not responding to any treatment. Dr. Zivadinov added that patients rights should be respected and if an individual did decide to seek the treatment outside of a clinical trial, that they be monitored closely by their Neurologist. 
My conclusion:
 The research and treatment are very promising, however it is not a cure.

The surgery  has the greatest impact on improving fatigue and minimizing future relapses. This does not mean you will never have another relapse, nor will your MS cease to progress.

There is a strong possibility of  the placebo effect.  The same can be said however, of any other MS treatments currently in use.

This conference and  the  interest in more clinical trials, has very clearly (at least to me) been patient driven.

I have more respect and understanding of the power of the internet.

The only thing that really bugged me is how all the neurologists kept emphasizing how successful  drug treatment has been to  reduce relapses and slow progression of MS . Based on my own research, I can find no evidence to support that.

Oh ! and one other thing that bugs me, not related to the web forum. The doctor in Canada who made lots of noise  and was quoted in a national newspaper, claiming that  the entire CSSVI research and treatment was "a hoax".  He said it would take valueable research dollars away from other research (the kind he was doing) He back pedaled and said on national television that  he was misquoted, after it was revealed that he has now applied for a research grant to study those very things!!

Sorry for any mistakes in my post. My spell checker refuse to work. When I 'm very tired; like right now, I make a mess of my spelling. "How" becomes "who" and I always seem to leave an " e" out of intersting!!

Monday, April 12, 2010

Liberation War ?

Saw an interesting news report on W5 about CSSVI and the "Liberation War". How MS patients are travelling all over the world to find doctors who will perform Dr. Zamboni's vein surgery. Here is the webcast along with other MS news.

I was crying while watching that report  yesterday. I can't stand doctors who talk down to people with MS.
CSSVI surgery is a placebo, it's quakery, (that comment really pissed me off!) we should proceed with caution, people have too high of expectations, blah, blah blah.

They don't proceed with caution when it's time to push a new drug that has been rushed to market and most of those only work because of placebo effect.  Why should MS patients  wait for a procedure that is very simple and low cost, that might, just might, slow down the progression of their illness?

Quakery?? This is a procedure than has been proven to work by a doctor,  who beleive it or not,  is not motivated by greed, is not opening "Zamboni liberation clinics" and is very open about encouraging  doctors to do research in their own countries to substantiate his claims. The guy is not selling copper bracelets claiming they can cure you.

In the end if it proves to not be very effective or doesn nothing so what? It's not like people are spending vast amounts of money and they can still keep taking all those wonderful injections that work so great (yeah right!)

What was most frustrating to find out is that other doctors came to simlar conclusions as Dr. Zamboni, but couldn't get funding for further research or their claims were out right rejected by the "MS is an auto immune disease" camp. I know the cheapo MS society in my area is only giving $100,000 for CSSVI research.

News flash to all you drug pushers, MS societies, kindergarten doctors, and all the rest of you nay sayers!!
This patient has lost her patience!

I want this treatment.  I want funding for more research and I'm going to get it!!!!

Thursday, April 8, 2010

CSSVI Live Forum April 14th

Sign up here for the live Web forum April 14th  with Dr. Zamboni. You can submit questions regarding CSSVI and his "liberation treatment" 

Wednesday, April 7, 2010

Caught in the Facebook Web

Does anyone know why my spell check doesn't work ?  Sorry for any mistakes in advance. When I'm tired I'm not so good at proofreading..

In a previous post I mentioned that I had  gone on a hike during the Easter holiday. I posted a picture of myself at Buttermilk Falls.

Today I went into work and had  a couple of people say "I saw you on D***'s Facebook page!!
I was stunned. I had no clue what they were talking about. Turns out my friend  had posted  the same picture of me, that I have on my blog. This is a recent friend, not a long time one. She doesn't seem to understand why I 'm unhappy about this and I'm disappointed that she doesn't get it. I'm also disappointed that I thought I could be friends with a person who shares a common interest only to find out  that it isn't so.

It would have been nice if she had at least asked me if it was OK to use my photo.   Everybody knows I don't care for Facebook. I agree with another friend that Facebook is like perpetual highschool. Supposedly my friend had over 150 friends on Facebook. Well, they aren't my friends.  Yes, I used the photo on my blog, but it was a picture of me, not somebody else. I never post photos of people on my blog  unless I have permission from  them. I think that is just common courtesy and respect for their privacy. Not everyone wants to be a part of the social networking scene, especially when you have no clue who all is in that network.

Can a person really have 150 friends? Or is it that I'm such an old fogey that I don't get the whole Facebook  thing? That perhaps calling someone a friend means something different than what I think it means.

And maybe I'm kidding myself to think that there is any such thing as privacy anymore. I have a blog that anyone who cares to, can read. I have given out my address to hundreds of people through  my postcard hobby. They could be on Google maps right now, watching my house and I don't even know.

Still, I think it would be nice if a person would ask me first if they can use my picture.



Monday, April 5, 2010

Relative Razz

Ahhhh! I thought there was no waste  pick up today because of Easter weekend.  This morning, the garbage trucks woke me up. Looks like I'm stuck with a huge bag of smelly stuff, an overflowing green bin, and tons of recycling. I'm sure the Raccoons are rubbing their little paws together at the thought of it. 

Easter Sunday started off  nicely. Another day of  sunshine and mild temperatures . I managed to make a serious dent in the garden clean up. Still lots to do, but considering it's only the beginning of April I'm way ahead.

Then in the early evening I had the attack of the relatives. Somehow we got started talking about MS and it went downhill from there. Funny, when I was diagnosed they never even knew what MS was  (just like me) and now they seem to know all sorts of people with it.  Those people are fighting their MS, those people take injections, those people listen to their doctors,  those people are just so darn good. Translation? I am not a good MS person because I don't do any of those things.

They don't come right out and say it. They imply it, by always finding these shining paragons of MS. Yet when I challenge them, it is very clear they know very little about these goody goodies .(Yeah, like maybe those injections don't work?)

Listen up!! Yes, I think that the theory of CSSVI as put forward by Dr. Zamboni is correct. No, I'm not going to take injections EVER!! I'm also not going to take all the other prescription slop the doctors offer AND I'm not going to waste my time with any more tests, doctors appointments, and alternate therapies. The chiropractor and the naturopath  can't do squat for my MS.

How do I deal with my MS? I get up every day,  take my vitamins and  get on with my life. If I have a headache I take some Advil. I use THC vapour to help me relax and sleep. I walk and swim for exercise when I can and if I can't, I don't.  If I don't feel good I take a sick day.  See? Life is so simple.

Do I ask you for anything? Do you ever hear me whine or even bring up the subject of MS, except for the time I told you I had it ? When I fall apart, which I will evetually do, I will figure it out.

So get off my back. I refuse to be the good little MS girl for you.

Friday, April 2, 2010

Buttermilk Falls

Wow! Amazing record breaking weather. Here I am fooling around at Buttermilk Falls, while I was out hiking today with the Waterfalls of Hamilton club. My friend Debbie is in the third picture below trying to decide the best path up to the water. It was much trickier than it looks in the this shot. but worth the effort.  

Thursday, April 1, 2010

Adventures and Sad Truths

Amazing weather and the entire weekend will be record breaking.
25C expected for tomorrow!

Things I have learned from my adventure that I hate, but think are true:

1. Life is much easier if you are attractive.
2. People don't really want to deal with anyone who is: disabled, disfigured, slow,
elderly, physically or mentally ill.
3. People really would prefer that any of the above would just go away.

So time to tell about my adventure in Syracuse New York. I had cosmetic surgery; a "mini lift". I decided to go to the States to have it done partly for privacy reasons and partly because this doctor was recommended to me.
Nobody knew I was doing this except my son and a couple of folks in my postcard club. So now everybody will know!!

I stayed at a hotel that has many guests who frequent this cosmetic clinic. The staff are use to seeing people with bandages wrapped around there head and they don't seem to care. The first day I looked like the woman in "The Brain That Wouldn't Die". I was so stoned from the drugs they gave me that I spent two days at the hotel totally out of it. Lucky for me they had "Turner Movie Classics" and excellent room service.

The trip home was interesting. People on the train pretending not to stare at the lady with puffy eyes and an elastic bandage wrapped around her head. Parents steering their children away from me. Not that I blame them.

When I was young I never understood the power of beauty. Now I'm older and I realize how many times in my life having good looks made a difference. I'm not saying it's right, just a fact and a sad truth

Yeah I'm vain. No, I'm not looking for lost youth, but it is rough to find myself working with people who look like they are 12 years old. When did that happen?
I also think I've been so bummed out about this MS thing I figure I can use a boost

As Erma Bombeck said " Beauty is only skin deep, but who wants an adorable pancreas?" and Ellen Degeneres " Inner beauty is important, but not nearly as important as outer beauty".

I will post before and after pictures soon. I won't cheat by having a terrible before photo with an angry bland face and an after with a ton of make up and a big smile.