Carole's MS blog

Hello 2012 - Good Riddance 2011

2012-01-04T07:52:00.000-08:00

Decided to use my morning coffee break to update my blog.

I really meant o do a year end wrap up a couple of weeks ago, but there was just so much going on over the holidays Some of it good, some of it really awful.

2011 was the usual roller coaster ride. The year ended on a positive note. My new "duty to accommodate" contract at work is good for a year. I only have to be in the office 10% of my time; barring any unforeseen need to be there, like a meeting or seminar. Thank God ( and I really do mean it when I say that) .

When I received the news I broke down in tears of joy and said a prayer. All the struggles, all the hassles, that could have been avoided but that's human nature. We don't seem to be capable of admitting when we're wrong until a very long struggle has occurred. I know I had to let go of many of the small grievances that I now see were petty and focus on the ultimate goal: to continue to work, be productive for as long as I can, and retire with dignity.

Then there was the surgery on my thyroid which turned out to be the best case scenario. Hooray!

The saga of the tree falling on my house still continues to plague me, but only in small ways. I'm hoping my house will be back to normal by spring.

So moving on to 2012.

I have already broken two of my resolutions To take a break from online shopping and Ebay auctions. My excuses being that I can't resist free shipping and I simply can't face going to a mall ! It was so great to be able to do the bulk of my Christmas shopping online. No crowds, no overheating, no confusion, no exhaustion. Just a computer and a nice cup of tea.

Three of my other resolutions I have already made positive steps toward achieving. They are: my diet ( yeah how boring of me), to do more writing (non blog related ) and the biggest and most challenging one; to eliminate emotional poison in my life.

I can no longer permit the human drama and the endless soap opera to infect me. My health is at stake. I see how the negativity of others makes me get sick. If they want to live in the past, blame me for their failures, and continue to abuse themselves physically and mentally; good for them. I'm not going to allow myself to become fat, miserable, alcoholic, out of shape, and irrelevant. And for those of you trying to drag me down that path. I say goodbye to you. You aren't my friends. Hmm this sounds very negative, but it's out of my system now.

It isn't easy to turn my back on so many family and friends; but it must be done. I want to move on. I want to hold on to those that I truly love. I want to enjoy my life for as long as this crummy MS will let me. Oh yes there's no getting away from that monkey on my back, but I'll save that for another post

Anyway, I'm going to do something daring here. Post a photo of myself from New Years Eve 2011. I'm doing it to show the world( that is anybody who still reads this blog) and bust the MS stereotypes !!

Cheers everybody!!

Scotland Calls for Mandatory Vitamin D

2011-12-23T21:50:00.000-08:00

Here's an article from The Guardian about the link between a lack of vitamin D and MS. In Scotland, which has one of the highest rates of MS in the world, they are calling for mandatory doses of vitamin D.

I don't know if vitamin D helps or not, but I do take at least 1000 units per day. There certainly seems to be a valid link between lack of vitamin D and MS. Why is it that it is an illness found mainly in countries with little sun in winter and nearly unknown in countries that get the most daylight hours?

Niagara Lights

2011-12-14T15:09:00.000-08:00

Last weekend I was at Niagara Falls for the "Light Up the World" event. The 70th anniversary of Amnesty International. Have to say that it was a disappointment. Just a hand full of people attended They even arranged to have the Falls lit up yellow for the event. So much for social networks being this great unifying force. I'm not on Facebook I found out about it from a friend's email ( so old school of me) but supposedly it was well promoted there. I maintain that instead of reaching out to people; social networking only encourages cliques. Anyway, here's some shots of the Christmas lights .

Not the best shot but it makes the full moon look like a star

Montreal Massacre

2011-12-06T12:18:00.000-08:00

Today women commemorate the murder of 14 women in Canada which happened 22 years ago. Sadly known as the Montreal Massacre, the lone gunmen ranted about how "feminism" was responsible for all his problems.

Santa Claus Parade

2011-11-20T09:07:00.001-08:00

http://www.thesantaclausparade.ca/

Dr Fraser Mustard

2011-11-17T07:06:00.000-08:00

Dr. Fraser Mustard died today.

He was my doctor when I was only 2 years old and needed surgery for club foot. Those were hard times for me and my family, but he helped us get through it. If it hadn't been for him who knows if I would even be able to walk. He was a great man who did so much for children He will be missed.

Appeal to the South Asian Community

2011-11-08T09:33:00.000-08:00

A member of my postcard club needs a bone marrow transplant. If you are South Asian and can help, please have a look here

Post Op

2011-11-03T12:20:00.000-07:00

Here it is Thursday, day two after my surgery. What a relief to know that I only needed a partial removal of my thyroid and I won't require any medications, as the remaining part of my thyroid is normal.

My Thanks to the surgical team at St Joseph's Healthcare. The new day surgery unit at that hospital is a marvel. Not only very efficient and well organized, but all the staff are friendly and caring. Not surprised that it has been named one of the top employers in Canada for 2011.

How wonderful to be able to go home after the surgery with no worries. I was assigned a home care nurse to check up on me, change my bandages, and monitor my drainage tube. I had expected to pay for the supplies for the home visit, which consisted of a large box packed with items; but no. When my son went to pick them up at the medical supply store, they said no charge! And that has nothing to do with my financial situation or anything else. It's all a part of my treatment.

THANK GOD FOR CANADA'S HEALTHCARE SYSTEM !!!! I can't say it loud enough or often enough. Anyone who says different is wrong.

As a taxpayer I say we are better off investing those tax dollars in healthcare, than wars, foreign aid, or tax breaks for the corporate elite. Canada has always be pointed at as an inefficient, socialist, unsustainable country. Well Bah! to that I say! Look at the G20, the Eurozone , and the United States. They flouder and yet Canada has been able to hold it's own. OK so we aren't they peace keepers anymore ( which is distressing to me) and our current government looks too often to American Neo Cons, for inspiration, but Canada is still a pretty decent, fair place to live.

Even though I still have the challenge of MS to deal with; I can say that right at this moment, I feel happy to be alive.

Pre Op

2011-10-25T08:45:00.000-07:00

This morning was my visit to the pre operative assessment clinic for my surgery November 1. Many tests done and a meeting with anesthetist and surgical nurse. Once again we went over the best case and worst case scenarios. Hoping for the best, because the worst case doesn't sound at all like fun. Not happy that there's the possibility that the surgery could exacerbate my MS symptoms (their words, not mine)

Doesn't matter if you go to the shiny new wing of the hospital with the pretty bright green decor, meet the cheerful, smiling staff, dressed in colourful uniforms. It's always the same. Before you enter the hospital don't forget to check your dignity at the door. They treat you like a 5 year old ( speaking slowly and loudly) or like a slab of meat. OK I know we were all girls in the room; but did you really need to leave me lying there with the hospital gown wide open in front while you ladies had a chat ?

Here are a few photos from from late September early October. I went to the Nuit Blanche art festival in Toronto, which I have to say was a little disappointing this year. One good thing though is I decided to check out Sugar Beach, which is at the foot of Jarvis Street near the Redpath sugar factory. Wow! That area sure has changed from when I lived there 15 years ago. The beach is lovely and the sand; whatever kind it is, does look and feel like sugar. If you work in downtown Toronto I recommend you go there and see for yourself.

CCSVI In the News Again

2011-10-03T13:10:00.001-07:00

Check out the latest news on CCSVI : http://www.healthzone.ca/health/newsfeatures/research/article/1063526--apparent-link-between-ms-and-narrowed-neck-veins-canadian-study-finds?bn=1

Birthday Adventure

2011-09-30T19:14:00.000-07:00

Did the "CN Tower Edge Walk" for my birthday. Not the fancy stuff like hanging by my heels over the edge or standing on my tip toes, but I did walk all around on the edge. Yeah, having poor balance and wonky legs makes me less of a daredevil. I also didn't want other people to see me wobbling; thinking I was so because I was frightened. No not at all, I was totally calm. The only thing I don't like is how fat I look in those coveralls!

Festivals and The Coming Fall

2011-09-10T16:32:00.000-07:00

High Profile

2011-09-05T07:21:00.000-07:00

Before I get into my post; you should check out Google's (Google Doodle) tribute to Freddie Mercury. He would have been 65 today. The band Queen, was, and still is, a huge favourite of my friends and me.

Then there is Neil Cavuto, a news correspondent on Fox Business News, who talked on air about his MS. I don't watch Fox, but a friend of mine does and told me about it. Out of curiosity I decided to read the story online.
Good for Neil Cavuto to admit publicly he has MS and talk about the typical stages: denial, anger, depression, acceptance. Not so good, that once again the world is misinformed about MS. Another person "fighting" MS believing " I've got MS but it hasn't got me".

Here are my MS facts:

MS progresses, no matter what you do. It's different for everyone and progresses at different rates.

All the drugs in the world won't stop progression. Maybe slow it down a bit, but MS will continue to progress.

Not all MS suffers end up in a wheelchair. Most don't.

MS does not cause muscle atrophy. MS affects neurological function, which can impair mobility, which can lead to muscle atrophy.

There are common symptoms such as fatigue and depression, but MS is different for everyone. That is why it is often difficult to diagnose.

MS is not a death sentence. Rarely, does anyone die as a result of MS.

Keeping yourself as fit and healthy as possible is the best way to live with MS, however; no amount of juice, vitamin pills, drugs, meditation, acupuncture, psychotherapy, prayer, exercise, massage, chiropractic, marathons, positive thinking, will halt the progression.

You don't have to be a super hero when you have MS. You don't have to prove anything to anyone. It isn't a battle.

There are days when you will want the entire world to get lost. You won't feel like putting on a brave face.

You will have to endure the blessed ignorance of those who are trying to help you . You will be accused of not trying to help yourself.

You will have to accept that there are things you can't do anymore.

MS is a crap shoot. It sucks !! It's got you and that's that!!

You can live with it though, and you can still have a good life

Night Time Worries

2011-09-02T20:46:00.000-07:00

A quick post before I go to bed. Trying not to worry about the appointment with the surgeon next week and trying to not worry about another meeting at work. Ahh! I feel like running away, only it's too hot out (32C)
and my thyroid would still be lumpy. I have to keep working too, even though they are really sucking the life out of me. Once again I have new bosses and they of course have their own take on my medical accommodation.
I say if it ain't broke why fix it?

I could understand the meddling if I were a bad worker; but I'm actually a pretty good worker!I do as much as any of the healthy people. Well I'm going to try and not think about it and enjoy the long weekend. The last one of summer. It's supposed to cool down quite a bit by Sunday and I'm looking forward to that.

Next post I have to talk about my favourite dream.

Z: Zen

2011-08-23T08:32:00.000-07:00

Z: Zen

Here is Jack Layton's letter to Canadians, although I think everyone, everywhere, would feel inspired by it .
Jack Layton's Last Letter

Zen is a Buddhist teaching emphasizing meditation and intuition. During difficult times we should focus on what is important and trust our instincts. Not always easy to do. There are times when we feel cheated, left out, used and abused. We wonder if we are making the right decisions; what with all the information that gets thrown at us. So much advice, so many people telling us what they think we should do. Some do it out of love, a love that often smothers more than it nurtures. Some are just plain busy bodies that have a need to fill. Others want to help, but have their own challenges to face. In the end, we are alone when it comes time to make decisions about our lives and what direction we should go. We must push aside doubt, block the noise, focus, and do it. We can do it.

Y: Youth

2011-08-15T15:07:00.000-07:00

Y:Youth

"How do I know my youth has been spent,
My get-up-and-go, got up and went.
But in spite of all that, I'm able to grin,
When I think where my get-up-and-go has been."

Pete Seeger

Yeah I'm seriously lacking in "get up and go". Found out I will have to have my thyroid out, which really sucks and my legs are messed up . At least that hasn't stopped me from getting out, even if it's just for short intervals.

Went to the James Street Art Crawl last Friday. Hadn't been to it in months mostly due to the weather. It rained all spring and then it was brutal hot and humid most of the summer.
I don't mind so much feeling like I'm going to melt if I'm out on the nature trails, but going in and out of buildings with no air conditioning, is just too much for me.

Have to say I was disappointed in the Art Crawl this time. It's turning more into a street festival; with food stalls, craft booths, and various special interest groups pushing their agenda. Hey !I have nothing against Vegans, yet I don't really think it's appropriate to have a t.v. on a public street, showing videos of piglets being slaughtered . It's the Art Crawl and I came here to see art!!

There are so many of these festivals during the summer and they all have a sameness about them. Food, shopping, really loud third rate bands, beer gardens, and those inflated bouncy castles for kids. And why would I want to sign up for a cell phone contract or a fitness club while I'm at an outdoor festival? Hey I sound like a complaining old fogey!

Yeah, well, my life is not exactly a picnic right now.

X: X Rays

2011-08-06T13:50:00.000-07:00

Before I talk about X Rays. Here's a few snaps from the Hamilton Caribbean Parade

And just a few metres away a tribute to the Hiroshima dead.

A day of sorrow; a day of joy.

I find out that the X Rays I had to treat acne when I was a teenager, may have caused my thyroid problems.
I find out next week just how bad.

W: Warcraft

2011-08-01T20:30:00.000-07:00

W: Warcraft

Picked up another addictive habit. Playing the online game Warcraft Cataclysm. My son and his friends play and
told me about a trail version, so I figured what the heck. It's blazing heat out and I feel so much better when I stay indoors, so I thought I'd give it a try. I'm really terrible at it, but have managed to get to level 15 with my Blood Elf character, although she has been killed and resurrected several times(damn those vampire mist bats!!) . So far she can attack enemies with fire bolts and frost bolts.

The game has "quests" to earn points to obtain a higher level. These quests are mostly going around killing weird creatures and collecting things. The people who know what they're doing can chat, join groups, and guilds. I'm way too slow for all that, although I really would like to. It makes me feel good to know that I'm not the space cadet I think I am and can actually figure things out in this game and have a strategy.

Have some time to waste? Give it a try

Here's a good quote I found at Doonesbury.I couldn't agree more and it's another thing that makes me feel better. I'm not alone!!

"I have always wished for my computer to be as easy to use as my telephone; my wish has come true because I can no longer figure out how to use my telephone."
— Danish computer scientist Bjarne Stroustrup

In closing I just wanted to say that I published some recent comments but now I can't figure out where they went and can't remember who they where from. They are really good comments too so Thank You.

What's that I just said about not being a space cadet ?

V: Value

2011-07-20T20:27:00.000-07:00

V: Value
Does human life have value anymore? After my recent travels and also watching news about the the phone hacking scandal; I think not.

What else can I say about air travel that hasn't already been said? Does anyone remember the comic Alan King? He had an entire routine about how awful air travel is and things have only gotten worse. You have to practically be an Olympic athlete to survive it.

I know we need airport security, but those body scanners are dehumanizing. Doesn't seem to matter how much security we have when any bozo can hack your cell phone and even delete your messages.

Enough said about all that, because it's too depressing to think that we no longer have any privacy or any dignity.

On a lighter note: I'm plugging a website for my friend Sourav, who lives in Mumbai. It's called Skyward Future Artists. If you like art you will enjoy this site.

We are having a crazy heatwave, 38C out there. For the last three days I haven't been any further than my garden and even then only for a few minutes. I can't handle this oppressive weather. Yeah, last week I was visiting friends who live in the dessert and it was incredibly hot; but they live the typical American lifestyle. The go from the air conditioned house, to the car, and then to the cool indoor destination, with only short periods outside,so I was fine. Back home it's a different story. I don't have a car, I detest cabs, and public transportation in my city really sucks. I'm staying in my nice cool house and am amazed how much better I feel with the air conditioning on. Haven't had a hot spell in weeks. It's lovely to feel almost normal.

Most of my vacation pictures didn't turn out . I'm waiting for my friends to send me a few shots. Meanwhile, here's one of my favourite restaurants in Las Cruces, N.M., me at the pool cooling off, and some art.

U: UN

2011-07-04T13:45:00.000-07:00

U:UN

And I don't mean the United Nations. No, I was looking up a word in the dictionary; the old school, book kind, when I came a cross the the entry for : un. A very useful prefix, that can be used to change the meaning of so many words: unkind, undead, unbelievable, undeniable, unlike,unreal, etc. etc.

Perfect because I'm feeling very un. First, the phone call from the neurologist's office, telling me they can't interpret the results of my thyroid biopsy, so they are referring me to an endocrinologist. That I don't get. Either the thing is malignant or benign. Has to come out, or be treat with drugs. Another delay, another nuisance.

Then I got the bill for my share of the tree removal: $1045.!!! At first my neighbour and me were hopeful that that was the total for both of us, but Nope!! AND does the neighbour who's tree caused all the damage give a hoot!! Nope. AND no point in putting in an insurance claim since I have a $500 deductible and they threaten to raise my rates if I do. Don't you just love insurance companies!

Canadians, this is the kind of crap we will have to go through with insurance companies if we decide to go with private health care; so think about it before you start ragging on about what a mess our system is. We have a pretty good system; even if the doctors can be real twits sometimes.They are just as big of twits in the U.S.

I've been reading some MS blogs, which I haven't done for awhile. So many people having real challenges.
So many people who believed the drugs would help, yet sadly they progress; just like me. Doesn't seem to matter what we do, MS keeps marching to it's own pace.

My challenge right now is with my walking. I can still walk pretty good, but I've had to give up climbing the stairs at the harbour, and walking uphill yesterday, was really slow and difficult. My right leg is the one causing me problems, but the left one ain't so hot either. I guess that's because I'm compensating for the right leg, which stresses the left. I can see that in the near future I may have to sell my house, because the stairs are getting hard to manage.

The Canada Day weekend was pleasant. The first real summer weather and the first weekend for air conditioning. I have a love/hate relationship with my air conditioner. I feel so much better when it is on but I hate the ever increasing expense of electricity. For me the culprit in my MS struggles is the heat, so I really need this air and I hate that reality.

Here's a few photos from this weekend. It was Scottish day at Dundurn Castle, and I just happened to be going by when the bag pipers were practicing. We were being sill at the garden and the ants were having a good time too. The Elvis is from my trip to the Falls last week. For $2.00 he will do a dance and give you a guitar necklace.

CCSVI Clinical Trials

2011-06-29T19:45:00.000-07:00

A break from my alphabet posts because of an important announcement. The Federal government is going ahead with funding for CCSVI clinical trials. Read about it here http://www.thestar.com/news/canada/politics/article/1016906--ottawa-to-fund-trials-of-controversial-ms-treatment?bn=1

Yay!!! It's a step in the right direction.

T: Trails

2011-06-22T08:51:00.000-07:00

Another rainy day here. Ever since the tree incident I'm nervous during a thunderstorm, as the tree that is now only half a tree, is very threatening. A city inspector is supposed to drop by to have a look at it and it will be cut down if it is deemed to be unsafe. I think it is and so does my neighbour. She has more to worry about than me since her house is tiny and has the most exposure to this half tree. You would have to see it to realize what a huge thing it is and far too big for the tiny property it's on. If I don't hear anything by next week, I guess I'll have to start nagging my city Councillor

I'm waiting for the results of my thyroid biopsy. I should know the good/bad news by the end of the week.

My legs are killing me and I'm walking very stiffly at times. Still I manage to get out on the trails walking. I'm a wreck afterwards but I don't care. I'm a wreck anyways, so may as well keep walking. If it means I spend the rest of the evening lying on the couch so be it.

The only other news is the federal government has introduced legislation to privatize the growing and sale of medical marijuana. Health Canada and regular folks like me will no longer be permitted to grow the stuff. I don't have a problem with that except once again; will the weed be of poor quality and expensive like the health Canada product is ?

There's no point in me even saying that marijuana should be legalized. Our prime minister has made it clear that no way will that ever happen while he is in office and he has a majority in parliament . An international panel has declared the war on drugs to be a total failure, and recommends marijuana be legalized, but do the politician listen ? No they and the enforcement community are stuck in the 1950's ideology of " Reefer Madness".

For some reason a person has decided that the Sassafras trail, is the LSD trail, as you can see from the pictures below.Why anyone would get stoned and attempt to navigate this trail I think is very foolish. There are no lights, and if you veer off the trail even slightly there's tons of poison ivy. You could also easily fall down the embankment and end up in the harbour. Otherwise it's very pretty and soul restoring to walk there.

S: Subculture

2011-06-13T08:31:00.000-07:00

On June 3rd I went to the "Treating Yourself Expo" in Toronto. Everything and anything, you need to know about medical marijuana. Not to long now until I get my license to legally smoke and grow my own weed. The only thing holding it up is the mail strike. In the meantime, if I get hassled I have a temporary card to legally smoke it, and the name of a good lawyer too. A young man in a wheelchair told me he was arrested even though he had his license on him. The charges were thrown out of court, but still he went through a year of stress.

What an interesting show. The people at all the booths were so kind and had lots of useful information. The common theme seemed to me to be about compassion, although it's amazing to see how companies are cashing in. All the things you need to start your own grow op, whether indoors or out; including a
self contained unit with lights, tables, fans, and security cameras starting at $80,000 and up, depending on how you want it customized. They had a small unit for $1200 called the "Spinner" which holds about a dozen plants and only uses about $20 per month of electricity. If things go well, I'm considering buying one for myself.

I tried this amazing marijuana pain relief cream. It wasn't for sale at the show but the had samples. I rubbed some on my neck which was so stiff and sore, I didn't think I would survive the trip on the bus to Toronto.
At first I thought it wasn't working; then after about half an hour Wow! It removed all the pain and stiffness.
I'll let you know the name of it as soon as I sort through all the information I picked up at the show and I have a ton of it.

Then I purchased a marijuana cookie; cranberry and white chocolate. During a break, I had a cup of tea and half of the cookie. Same thing as the cream; at first I didn't think it was doing anything and then Boom! Did I ever feel good and mellow. The cookies range in price from $8 to $10 each which is expensive, but you could easily break it up in pieces and still get a decent buzz. What a nice relaxing trip home on the bus!!

So here we are with this weed subculture. It seems like everybody is doing it, yet the stuff is still illegal!

The only other news is that a tree fell on my house during a real nasty thunderstorm. The guys are outside right now cleaning up the mess.

R: Retirement

2011-05-30T12:59:00.000-07:00

R:Retirement

Retirement is the big topic of conversation at work. Seems like every week another Baby Boomer says goodbye to the work place. I still need to decided whether to take early retirement or try and hang in there another 3 years. Seriously though, I don't think I can. I've had a serious decline in my health the past few months; the most recent thing being my legs, especially my right one. I can still walk good but I'm having some trouble going up and down stairs; going up is much worse. Ahhh! the only way I can cope is to take it one day at a time. The future is this scary place and I can't handle it.

Here's a few shots from another recent walk. Strange to find two street memorials in the neighbourhood. The cycle of life: creation, preservation, destruction.

Q: Questions

2011-05-16T11:30:00.000-07:00

Q: Questions

OK now I have some growths on my thyroid and am waiting for the biopsy results. So looks like it's going be another round of questions What? Why? What to do about it?

In the meantime I went to the Global Marijuana March, on May 7th in Toronto. Here's a few snaps of that day. You can see it's a large, diverse crowd. Will Weed be legalized in Canada?

No way, not with our current "We want to be just like America" Conservative government. People forget that the last few years we had a minority government; but now with a majority, the Conservatives will be able to push their much loved hobby horses: Increase in military spending, mandatory sentences for drug possession, free hand for big business to do as they please, dismantling of the healthcare system etc. etc. Think it won't happen? Just give them a few months to settle in and then you'll see.

Not that it matters much, according to these guys.

P: People

2011-04-29T09:14:00.000-07:00

Above are the American and Canadian Falls at Niagara.

P:People

Over the Easter break I went to Niagara Falls on a day trip.I take the casino bus, but once I'm there I do very little gambling.

It's interesting to observe people's behavior on the bus. On the way to the casino everyone is talkative and bubbly, as they look forward to getting rich quick. On the way back home everyone is silent, so I guess that means they all lost.

I had a twenty dollar gambling credit, courtesy of a coupon and refund of my bus ticket. I decide to match that with my own money, so I spent fourty dollars total on slot machines. Well, it took about five minutes for me to lose it, so I decided to get out of there and do some shopping and sight seeing instead. Yeah, I've seen the Falls dozens of times and the weather was awful, but better to that than bankrupt myself sitting at a stupid slot machine. And please don't tell me how you win all the time and you know people who win big jack pots. I hear that so often, yet people are silent when they lose, because the truth is you might win occasionally but if you keep gambling you will lose it all and more.

How sad that Ontario Lottery and Gaming admits that their main revenue comes from a small percentage of heavy gamblers. They justify it by claiming to spend money on counseling for gambling addicts and offer a hotline for people who get into trouble from gambling. When did governments become so dependent on the proceeds of casinos and lottery tickets? When did trips to casinos become the mainstay of entertainment for so many?

So people; especially all you seniors out there wasting your pension money. Get out of the casino and go do something else. Anything, but stop wasting you life sitting in front of a slot machine.

How about a walk on a nature trail? There are even ones for people with mobility issues. You can even see some impromptu art works, such as these I spotted on the Sassafras trail this past weekend.

And other interesting things

O: Office

2011-04-17T08:33:00.000-07:00

O: Office

Cold rainy, and windy out this weekend. Haven't been out at all . My legs are really sore and stiff. Don't know why.

Decided to continue talking about The Office, no, not the show, but the place I work, although sadly that show is very much like it.

I wish I could say that I like my job. Well I like the work just don't like the people and the place anymore. I have a very good paying job with excellent benefits. Don't get me wrong; I'm grateful for it, but the last few years have been a real strain. In the past I was able to ignore the busy bodies, gossipers, and tattle tales, but lately they really have been getting to me. No matter how hard I try, there's always somebody in my face ! I expect it from management.They have to justify their existence and they don't treat me any different than most people (like crap). What I don't get is coworkers who are determined to make life miserable for everybody around them.

Not sure if social media or things like reality shows have anything to do with it; but it seems that a large percentage of the population really enjoys being in other people's pockets, all the time. They also seem to think that constant wise cracks and meanspirtedness is funny. It isn't. To para phrase Ellen Degeneres "if you are just kidding how come both of us aren't laughing" Also think it has to do with my being sick and that I'm not on my game anymore. It's easier for people to get me because my defenses are weak.

If you work in an office you know what I mean. I won't go into details about the different office types mentioned above. What gets me is that most of us there are in the same boat. We earn roughly the same money, give or take a few thousand. We have similar lifestyles. In so many ways we are the same. So where's the solidarity? There isn't any. It's like working with a pack of sharks.

So you will say that I'm ungrateful. That other people have crummy minimum wage jobs and get treated like garbage. That so many good paying jobs have been moved to other countries. I should give up this job. Well I would love to and my plan is to retire next year. I'm not ungrateful I'm just tired of all the unnecessary negative attitudes. It only makes things worse.

On a lighter note Here's a funny article about women and aging. I'm in the age group mentioned and it's good to know others are going through the same crazy stuff..

N: Notoriety

2011-04-11T16:30:00.000-07:00

N:Notoriety

A record 21C today and very windy.

To be unfavorably known. That's notoriety. This came to mind last week when I attended a Liberal party rally for Michael Ignatieff. Hey! We're having a a Federal election !!

I went to the rally because a friend convinced me to give the guy a chance, so I figured what the heck!
I know nothing about the man; only what I've read in the media and the Conservative view of him, which is that of an intellectual elitist.

He's actually very well spoken and down to earth. What I didn't like, and I could tell it made Mr. Ignatieff uncomfortable, were comments by members of the audience toward out current Prime Minister. Yeah I don't like the man either, but I draw the line at calling him the "Crime Minister". I really hate the attitude that we must vote for the other guy because the current leader is a bum . Hmmm, wasn't that long ago people were saying the same about the Liberals. Remember when they were the "Fiberals"

Here's the website for the Liberals, if you want to know more about the man who wants to be the next Prime Minister. I like him, and I do understand that backing a lesser party means we could end up with the same mess we have now, however, I'm voting Green. Not so much because I think they would be better; I mean good heavens!!They support nukes!! It's more a protest vote. I'm sick of the fact that we only have two viable parties (Sorry the NDP aren't) and that is it. Just like America , left and right, with nothing in between. I mean seriously that's it? Till the end of time? So yeah, my vote is seen as wasted, but I simply can't continue to follow the status quo.

Anyway, to show that in Canada we have our priorities straight: The french language debate has been moved from Wednesday to Thursday, as the Montreal Canadiens are in the hockey finals.

Aside from that, things really suck at work . A notorious tattle tale ( fits in perfect with my topic) complained about me using the "F" word . I wasn't speaking to this person and I wasn't using it to offend anyone. I was simply telling my co- cubicle sufferer, about the title of a song that happens to have that word in the title. He didn't seem to be bothered and thought it was funny. Guess I'm use to it since my son listens to" Death Metal"
That music always feature lyrics with swearing and many unpleasant, politically incorrect, points of view.
Oh yeah the snitch is a guy that I had to file a harassment complaint against, so he has an axe to grind.
That show The Office is Oh so true and so is Dilbert. Who came up with this concept of work places were people have to sit in little grey cubicles all day No wonder everyone is strange.

M: MRI

2011-04-04T13:26:00.000-07:00

M: MRI

Typical April day; a very mild 15C and rainy .

Had my MRI on the weekend. It was really fast this time, only twenty minutes. I'm glad I don't have to go all the way in the machine and have a mirror inside so I can see the technician. The space in the MRI is so tiny, like a white coffin. Now I just have to wait till my doctor's appointment in two weeks for the results. I also have to bring him this crappy letter from work, which is a revised version of an even crappier letter.

At my last meeting with management they gave me two letters; one for me, one for my doctor. After reading them it was agreed that they needed some serious revision. You can't say in one letter that legally you are not entitled to medical information and then in the next letter ask for just such information. I'm getting really tired of having to tell other people what the policies and procedures are. Why can't they take the time to look this stuff up? Anyway, they decided to have someone at Human Resources draft the new ones. Still dumb, but not anything I will be embarrassed for my doctor to read.

Oh! and I'm going to have a serious talk with my doctor. Too much is at stake that I can't afford to be casual about the whole business. If the worst case scenario happens I can always take early retirement. I would prefer not to since it will cost me lots of money. At the very least I will be taking some unpaid leave this summer. That, along with vacation time, should keep me away from that house of horrors till late August.

What a drag to have a really good job yet hate it at the same time. Not so much the job, but the people, and not so much the people, but the ones in charge!! They thrive on making others miserable.

My THC vapour must really be working good. I am told there was a huge thunderstorm last night. Didn't hear a thing.

CCSVI Conference

2011-04-02T07:28:00.001-07:00

Here's a link to a conference on April 5th about CCSVI

Hello Everyone: We are announcing today that a Canada wide conference call will be held on April 5, 2011. This call is a toll free call and you will be able to listen in on the meeting.

Time Tuesday Apri l 5, 2011 at 4:30 pm Ontario Time.

Purpose To announce our plans for a cross Canada education and advocacy tour in support of CCSVI , that will be starting in Fredericton New Brunswick on May 5, 2011.

Guest Speaker will be none other than Dr. Sandy McDonald. He will be sharing with his thoughts and suggestions on CCSVI .

We are hoping to have 1 or 2 more very influential people in on the call, so don’t miss this History Making Event.

Edward Conway will speak for a few moments as to the status of Angioplasty For All and will explain our fundraising attempts to complete the Medical Research for our case.

There will be a representative from the New Brunswick Government .

Diana Price and Tim Donovan, and Richard Beecroft will be chairing this meeting .Follow the innstructions below and we will see you on April 5 2011 4:30 pm Ontario time.

Instructions for getting on this conference call are as follows.

To join the conference by telephone :

Please try to call in 15 minutes early so we can start on time.

Call the number below and enter the access code.
Call-in toll-free number (US/Canada): 1-866-699-3239 begin_of_the_skype_highlighting 1-866-699-3239 end_of_the_skype_highlighting

Enter the access code when prompted: 969 899 293

To join by computer and telephone use this link. You may have to cut and paste to your browser if this doesn’t work. https://canada1.webex.com/canada1/j.php?ED=151901662&UID=490697033&RT=NCMxMw%3D%3D

L: Life

2011-04-01T15:27:00.000-07:00

L: Life

I shocked someone this week trying to describe my present day life with MS. I said I felt like I died and was reincarnated as me, but only half of me. Can't do as much, think as much, feel as much, as I once did.
That's life; have to take what you get and make the best of it
Haven't felt like blogging at all. Too many hassles at work have worn down but I keep going What else can I do?

Have to go for an MRI now. More later.

Alphabet Interupt for a Press Release

2011-03-23T15:50:00.001-07:00

For Immediate Release
NEWS RELEASE
Multiple Sclerosis Patients Denied Treatment in Canada
(Fredericton, New Brunswick, March 13, 2011) – The “Beyond MS Association of Canada” is planning an education, advocacy and fundraising tour to begin on Canadian CCSVI (chronic cerebrospinal venous insufficiency) Awareness Day, May 5, 2011. The “New Hope for Multiple Sclerosis 2011 Canada Tour” will share personal accounts of how a treatment (venous angioplasty) for CCSVI has given multiple sclerosis (MS) patients a new lease on life.
CCSVI is a condition marked by limited blood flow from the major veins that drain the central nervous system. The reduced blood flow from the brain and spinal cord is caused by collapsed or blocked veins and is treated by venous angioplasty. Although the connection between CCSVI and MS is not yet fully understood, the results experienced by MS sufferers who have received this treatment are remarkable.
Venous angioplasty is still experimental in Canada. The federal government has taken the position that evidence is lacking to support it as a viable treatment for MS. In spite of the controversy surrounding this treatment, more than 10,000 people worldwide have received venous angioplasty including Tim Donovan, the Tour’s spokesperson. Donovan left Canada for venous angioplasty in 2010. The improvements to his health were almost immediate and life changing. In addition to improved mobility Tim experienced enhanced balance and cognitive functioning.
Donovan has been successfully sharing his story in New Brunswick and plans to continue across Canada with a team of volunteers who are helping to organize the Tour; “seeing is believing”, he says. Informative rallies are being planned in major cities and towns, from St. John’s, Newfoundland to Victoria, British Columbia.
400 Canadians die each year due to MS complications. This number does not include those who have given up on their fight as the suicide rate for MS patients is seven times the national average. There is an urgent need to voice the MS community’s concerns and raise the Canadian publics’ awareness of venous angioplasty which presently represents the most effective means of treating CCSVI and consequently MS.
The “Beyond MS Association of Canada” is a national charity that has advocated for MS sufferers since 1997. The “New Hope for Multiple Sclerosis 2011 Canada Tour” is its latest venture in the hopes of making testing, treatment and follow-up care widely available in Canada. This Tour is being sponsored by Canadian businesses and individuals who have joined their voices and resources to make a difference and give “New Hope” to the MS community in Canada.

-End-

For more information or to get involved please contact:
Tim Donovan
President, "New Hope for Multiple Sclerosis 2011 Canada Tour"
Director, “Beyond MS Association of Canada”
E-mail: timmary1@nb.sympatico.ca
Website: www.newhopeforMS.ca

K:Karma

2011-03-21T08:44:00.000-07:00

K: Karma: One's action determine destiny

This karma thing is really hitting home. I think about all the dumb things I do and the end result. Nobody to blame but myself. Yet at the same time I see the stupid actions of others having an impact on me. Does it mean that I in turn am stupid because I allow it to happen? It's confusing. For example I'm having problems at work again ( and I really hate that my blog posts are so often about work). An individual who works on the same team as me is seeking a work accommodation That's fine, but they have dragged me into their mess. What a mess too!! I tried to explain to this person that just because they can't get the same accomodation as me (working at home ) doesn't mean that they should try to wreck what I have. But that seems to be the way people operate at my office.

How dumb of me to think that being open and honest about my MS was right. It's being used against me and I'm really am getting fed up. I can't even think about the future because it just looks so bleak. All I can do is live day to day and hope for the best. Not something I'm very good at; but I'm learning.

My plan to design and sell an MS bracelet is out. There are so many people out there who are already doing this and there are so many different fundraisers . One person selling Avon to raise money for a friend's MS surgery. Another selling bracelets and having an MS fund raising dinner for the same reason. I didn't want to raise money for myself. I wanted to give the money to keep going the legal action for CCSVI surgery. Now I guess I will just give my own money and try and come up with another way to rise some cash for this cause.

OK now I have to review my entire blog for any work references. Have to prepare myself for a new battle; which is really the same old battle. It sucks!!

J: Japan

2011-03-14T20:57:00.000-07:00

J:Japan

What can I say about the crisis in Japan?. I have a deep fondness for all things Japanese. I correspond with a few people there through my post card club and some of them have been able to post messages about what is happening to them. What would I do if I suddenly found myself homeless and out of work? That's the situation for many there, as well as coping with the worry of missing family and friends and facing the devastation of their world. Then there is also the deepening crisis over nukes. The latest report is that the radiation is spreading and people in the area have been told to stay indoors to avoid radiation sickeness .

I don't know what to do except say a prayer.

I: International Women's Day

2011-03-08T08:59:00.000-08:00

I: International Women's Day

Happy 100th birthday!! Check out events happening all over the world

I use to belong to the Women's Commitee at work I enjoyed it ; loved organizing seminars. The three best ones I'm proud of: A female police officer who gave a talk about her experiences when she was sexually assaulted. She did everything wrong and wanted to share that, along with information about the right things to do. Can you beleive she didn't report the assault because at the time she wasn't wearing a bra, and thought she would be blamed!!

Then there was the seminar with "Men Against Violence Against Women" I was sick when it happened but Oh Wow! I was told that there was a huge turn out. So many men coming to me afterwards and thanking me for making them more aware.

Finally, the speaker from Willow, a group for breast cancer survivors. The director of our office breaking down crying when she admitted to her breast cancer ordeal!! She gave an excellent impromptu talk about how to get through it The applause afterwards was deafning

So what happened? The chair of the committee took credit for all the hard work by me and the other members. Not even a crumb of recognition! She did it to further her career and it worked!! I was so disillusioned that I quit.

Is this the price we pay for joining the cut throat world of business?

Happy Day to all you women out there who work hard. You make a difference.

H: Happy Rambles

2011-03-01T10:28:00.000-08:00

H: Happy Rambles

Already March!! Where did February go?

I came across this website Happy Rambles It's a journal where, everyday you list five things you are thankful for. The idea is this will help improve your mood and lead to positive thinking. I'm giving it a try. Right now, I have so many things to worry about, I could use a bit of a boost.

Tomorrow I have a meeting at work to "review" my situation. Rumour is that they are going to take away my tele-work and that there are lots of people who want me to lose it. Not because they want it . They always claim that they could never stand working at home; as they would miss the social atmosphere of the office. That makes me laugh, a bitter laugh, because it is such a poisoned atmosphere. I think they just can't stand that somebody else has something they don't have . Don't you just hate rumours ? So right now everything sucks!!
My MRI has been rescheduled to April 1st. Happy April Fool's to me

G: Good Intentions, Government, Groceries

2011-02-21T15:26:00.000-08:00

G: Good Intentions, Government, Groceries

Good Intentions. Like everyday saying "Oh yeah I should update my blog" Then the day goes by and suddenly I'm too tired, so I say "Oh guess I'll do that tomorrow" and tomorrow and tomorrow. Yes, good intentions and MS. That's a road not only leading to Hell, but a bumpy one, filled with all kinds of things to stumble over. I must learn not to make commitments if I'm uncertain I can keep them.

Government. The problem with any comments about government, is that they end up becoming political. I make the occasional comment about politics here, but try to avoid it. Too much hassle and seems so pointless. All I can say is, I don't understand how people can have such a rigid ideology.That they identify with the "right" or "left" and there doesn't seem to be any inbetween. I have been described as a small l Liberal. I took a test that said I was a left leaning libertarian! Is that even possible?

I describe myself as a social liberal and a fiscal conservative. For example: I think all drugs should be made legal. Well I guess they are already, but we are such hypocrites about it. I also think there is too much waste in government and over spending. I get really tired of people always with their hand out, including rich folks, who should know better. I'm not going to go into details beause that would be pages and pages. It's simply to show that my ideals are all over the place.

Over the Christmas holidays I got into a heated discussion with a friend about their politics. I commented to them "You're a Conservative, that's cool, but seriously, you swallow whole every single thing that "right wingers" believe? "I mean , you really think it's possible that humans and dinosaurs co exsisted ?" "AND, you are an educated person with a Phd and an agnostic? "

That doesn't mean I let the "left wingers" off the hook (gee I hate the terms left and right wingers) I commented to another friend that it is immossible to think that we can all love one another. Everybody has prejudices and biases. The only way to avoid those being imposed on others is through legislation. You can pass a law to prevent a bigot from discriminating, but you sure can't stop them from having their beliefs.

I can recall a time when the line between right and left was a blurry one. Not, anymore and I think that is why we are in such a mess.

Groceries . Is it just me or have grocery prices gone totally crazy? How can they possibly say that inflation is low? It seems that every time I do a grocery order, it costs me more for the same thing. Ok, it's true, I'm fussy about what I eat. I make almost everything from scratch because I hate the taste of packaged foods.
I really don't know how much I can cut back and anyway, it seems pointless, because EVERYTHING is expensive. And what's up with all these individual serving sizes of food? Last time I did my grocery order they had on special, a plastic container filled with one serving of soup . You heat it up and eat it right out of the package. It cost $2.89!! Not only a rip off, but Bleck!! How can you eat hot soup from a plastic container? That can't be good for you.

F: Food

2011-02-11T13:44:00.000-08:00

Ok this is sort of cheating because I'm going to talk about my diet, which is sort of food related.

First, here's an interesting article about obesity. There's no escaping the fact that a low fat diet, rich in fruits and vegetables, and complex carbs, is best and that modern life makes us fat.

Then there's my modified protien diet. Modified, in that along with my protien, I can have 100 grams of carbs everyday. That's enough to be able to have some fruits and vegetables, a bit of rice or other starch, and the occasional treat. No limit on fat either, which maybe is bad, but I like the idea that I can eat bacon and fried eggs cooked in butter in the morning with no guilt. AND, that breakfast lasts me all day until dinner time. I munch on an apple or orange during the day. Keeping in mind that I do eat dinner very early. Unlike other diets I have tried, I don't get cravings and don't think about food all the tim.e In fact I can go an entire evening and not get the munchies; not even after having my THC vapour!!

The results? I can't say exactly how much weight I have lost, since I never weigh myself. My ex husband use to joke that it was against my religion to own a weigh scale. I always found that weighing myself just got me discouraged and I would give up on dieting. As an alternative, I have certain clothes that are my guide to how much slimming down I have done and still need to do. The ultimate test, is a pair of jean shorts that are over 30 years old. If I can get into them I know I'm really slim. Haven't had the nerve to try those yet.

Now, I'm not dieting because I want to look like a model.It's mainly for health reasons. Last summer while I was at an outdoor fair, I received a measuring tape from the Heart and Stroke Foundation. What a shock to measure my waist and find out I was in the danger zone !! The more weight you carry around your waist, the greater your risk for heart disease and stroke. There is also a risk for type 2 diabetes, which leads to so many health problems, including Alzheimer's!! Having MS is enough of a burden without adding any of that scary stuff.

Yeah I know I will most likely gain it all back and more; and all that bacon must be wrapping itself around my heart, but at least for now I feel pretty good. It is the easiest, least stressful diet I have ever tried.

E: Energy

2011-02-02T08:12:00.000-08:00

E: Energy

Before I comment on that I first want to thank everyone for the great comments on my last post. Now I have some good ideas to design an MS bracelet or some other type of jewellery. A friend of mine, who is very talented, will be making the items. Hope to have something soon and will post pictures of course!

Energy. I never have enough and run out of it so quickly. I know I'm repeating myself when I say how frustrated I am, at not being able to do all the things I want and need to do. The days of multi tasking are long over. Heck! I can barely single task! AND there isn't a single drug out there that helps; at least not for me.

So everyday I do the balancing act and every day, fall off the wire.

I can't explain this fatigue You have to experience it to understand. It isn't a sleepy feeling. It's a feeling of physical weakness, of brain drain, and well, being what I call a "space cadet". I never know when it's going to hit, although I know if I do to much it will. Too much isn't a whole lot anymore. The worst part is having to put up a front when "busy bodies" are around. I can't handle their unhelpful comments ( I'm tired too, Why don't you take X drug? I know a person with MS and they run marathons,You need more sleep, Get over yourself, Quit feeling sorry for yourself and go do something etc. etc.)

Oh! how I hate the feeling of total uselessness. Sitting on the couch, even trying to use the t.v. remote is a chore. Thank goodness for the old movie channel. It gets me through many a weary bout of fatigue.

D: Drugs

2011-01-24T07:48:00.000-08:00

It sure is cold out. Last night -29C with the wind chill factored in. I did notice yesterday that the days are getting a little longer, so that helps banish the blues I always get at this time of year.

D: Drugs

When I had my last doctor's appointment, sure enough; I didn't leave without a prescription. In a way I feel sorry for my doctor. He really wants to help me, but there isn't much he can do. He knows I won't take any injectable medications and that I reject most drugs. Still he keeps trying. This time it was another "anti fatigue" pill, which is in fact just another variation of speed. I''m sure the fact that I have a good drug plan only encourages doctor's to precribe more stuff that I don't really need.

When my doctor told me to take this new medication early in the day as it can cause insomnia, I didn't say a word, but I was thinking "here we go again!" The same message for a new drug as for the old. Drug companies are very good at dressing up old medications to look like new ones. I even saw a drug ad (while I was in the U.S.) for a pill that helps boost anti depressants, to supposedly make them work better. So they admit the anti depressants don't work that good, but instead of telling people to stop them, they come up with another pill for you to take!!

Well the prescription is sitting in the drawer and I doubt I will get it filled. I've tried those wake up pills and all they do is make me feel stoned in an unpleasant way.

My drug of choice is THC vapour and it works for me. Used in moderation, cannabis is beneficial . It helps me sleep and takes away my aches and muscle spasms. I also have very nice dreams!!

P.S. : Does anybody know the official MS colour(s)? I looked it up and some say it is orange, but grey, silver, and red are too. I'm asking because I want to design some jewel bracelets for a fund raiser.

C: Computers and Commentary

2011-01-13T10:08:00.000-08:00

C: Computers

What could I possibly say about computers that hasn't already been said?
I was very slow getting my first personal computer; waiting till around 1997, I think, and I'm glad I waited. Dial up internet and the constant upgrading to bigger better computers, seemed like a total waste of my time and money. How many people I knew back in the early ninties who wasted over $3,000 on a computer; only to have it surpassed a few months later and then even after many expensive up grades, the thing was no better than a large doorstop.

By the time I bought a personal computer the Pentium 2 and cable internet were available. Yeah there were lots of hiccups in the begining with the internet going down, viruses, and the simple fact that the computers simply couldn't keep up. It was thanks to my young son and his desire to play computer games that I figured out the need for a good graphics card, good speakers, and maximum RAM. ( I don't think they even call it RAM anymore).

Now here we are in 2011. My new computer with tons of memory, flat screen monitor, amazing graphics and sound only cost me $800 !

To me computers are a blessing and a curse. Computers allow me to work at home, shop for groceries, do my banking, and pursue hobbies . They also suck a great deal of my time that I could use to do others things!!

C: Commentary

"When you represent a district -- the home of the O.K. Corral and Tombstone, the town too tough to die -- nothing's a surprise."
— Rep. Gabriele Giffords, brushing off a 2009 incident in which a demonstrator's pistol fell out of his holster

In my blog I tend to stay away from political commentary and other "hot" topics like religion, however today I read an article that is one of the best commentaries on the awful shootings in Arizona. I won't bother to say what my take is on the situation, only to say that I will never again complain about politics and politicians in Canada as being boring. AND I don't care what they say out west in the U.S. or what my son thinks; I support restrictive gun laws. I may go into more details about that in my G Alphabet post.

I recommend Foriegn Policy magazine. I subscribe to the print and electronic versions. I always look forward to the" Morning Brief" email I get, with the days headlines from all over the world. No I'm not getting paid to plug it.

Hey this alphabet blogging is great Try it!

Alphabet Blogging: B

2011-01-10T17:41:00.000-08:00

B is for Better?

Had my appointment with the Nuerologist today. More about that later. At the end of it I asked him about CCSVI and MS surgery.

He told me that 25 of his patients have had the surgery. Of those, 3 have improvements in their health that can clearly be measured; meaning tests show they have improved. The rest say they feel better, have more energy, but there is no measurable change in their physical symptoms. He is optimistic that the surgery may result in fewer relapses and slow down progression, which is a good; however, he still thinks more research is needed and doesn't think anyone should go abroad for the surgery. I had to smile when he said that many of his patients have not listened to his advice and "it has been a humbling experience". Yeah the days of doctors being the last word are over. Patients feel empowered to take risks. Have to wonder if the internet has anything to do with it?

As for me. Physically, I'm better than last year, but mentally, I've declined slightly. No big deal, but I have to go for another MRI.

The appointmet was going well until the doctor asked about work . Without even realizing what was happening; I burst into tears. It may have had something to do with that morning before the appointment. I was catching up on 2 weeks of work email when I was totally taken by surprise, by a message from my manager. Next week my team will have a new temporary boss and in about three months another temporary boss until they find a permanent new boss. I don't think I can handle having even more people knowing my business and having to listen to their take on my health, what I should do etc. etc. Confidentiality becomes a joke when you have new bosses every few months and the old ones are still around.

So my idea of publishing a newspaper about my life and handing it out at the office door; is not so strange.

Oh yeah here's the link to my friend Sorav's art He tells me he can only sell it in India right now but you can at least have a look. And check out his art blog The link is in my list of Other Stuff I Like.

Alphabet Blogging: A-Z

2011-01-09T15:20:00.000-08:00

A is for Anxiety

Last night I came up with an idea to write about topics based on a letter of the alphabet from A-Z

Yeah I could have gone for the obvious : angioplasty; but enough of that for now, because last night I also had an anxiety attack. Now before you have me rushing to the doctor to get some pills and therapy please note that I refuse to allow emotions to take over my life. I faced that anxiety and got over it. I think the attack has more to do with frustration.The frustration of knowing that there are things and people that I can't change, so I have to make decisions about how I must change to cope with it.

I was sitting listening to my favourite radio show on Saturday night ( that will be my N alphabet post) and that's when the anxiety hit. I didn't want the music and the talk to be over. I didn't want a new week to begin. I don't want to go to the nuerologist tomorrow, nor go to the office on Wednesday. I don't want to call the plumber, to come once again to fix the crappy pipes in my old house. I don't want to go out in the cold, wear my winter coat, and trudge through the snow. I just wanted time to be frozen; sitting listening to beautiful music, stories, and poetry read by Marilyn Lightstone. Her soothing voice so seductive, so calming.

It's going to be an unpleasant week, but I have to face it head on. So many decisions to make.

A is for Art

Here's some art from my friend Sourav"Blame it on Your Parents" I'll post a link to his website as soon as he gets back to me in case you may want to see more and possibly buy something. He's trying to save money to go to Vancouver Film School.

Belated Happy New Year

2011-01-07T18:51:00.000-08:00

Happy New Year Everyone!!

I'm off to a shaky start; recovering from a nasty sinus infection and sprained ankle. What fun!

Seems like every time I travel now I get sick . I find the travel part is getting harder and I'm worried that I may not be able to keep doing it. How elderly and disabled people manage it; I don't know.

I thought the new terminal at the Toronto airport would be better than the rotten old terminal 3, and I was looking forward to using it. No!! It sucks! The departure and arrival is equally bad. I swear by the time I'm finally allowed to get to my boarding gate, at least six different people have checked my passport and boarding pass. All the time I'm having to drag my suitcase along until I can fiinally get rid of the stupid thing.
Toronto why can't you do like other airports and let people get rid of their bags at the checkout counter?
And what's up with that finger scanner? Who designed that arrival area? Making people go up and down escalators and walk endless corridors until they get to customs AND unlike American airports, no electric carts for people to use. You know, there are people who have difficulty walking, people with small children, and the rest of us, who are so tired and fed up by the time we get home, we don't need to run a marathon through the dumb airport.

It seems that every entity involved in air travel; from the airlines to security, have a total lack of regard for people's time. They just don't care. They don't even bother to make up excuses.

I also think my dream of retiring in the SouthWest U.S.A. is becoming more of an impossible dream. If I was healthy, it would probably work, but being very unhealthy and seeing signs like this:

Well I don't know. I'm so spoiled living in Canada. I take for granted that I can just go to the flu shot clinic and get a jab no charge, and so can everybody else. I can go to any doctor, hospital, or drugstore. Yeah our system is not perfect; but it's still a damn sight better than the mess they have in the United States, even with the new healthcare legistation.

I'm also not sure if I would fit in. Being on vacation is one thing, actually living there is quite another.

OK Monday I have my big appointment with my nuerologist. I won't even bother to ask him about CCSVI or angioplasty surgery. I will be discussing my options regarding work. That is something I'm very worried about. I'll have an update about it soon.

An MS Christmas Story

2010-12-25T07:33:00.000-08:00

Read here about Tim Donovan's MS Christmas gift.
Merry Christmas to everyone!!

Another CCSVI Story

2010-12-19T08:17:00.000-08:00

Read this article in today's Star. I can so relate to this woman's story since she too is in the "you don't look sick" category. The cost for CCSVI surgery in Albany, is pretty reasonable compared to going overseas. I have to decide in the NewYear if I'm going there for the surgery or wait to see what happens in Canada. Albany is close enough that if I have any complications I can easily return there. I still think that the procedure should be available in Canada, and will continue to support the ongoing lawsuit to acheive that, however: Should I wait?

Yesterday during a lunch outing, someone made a comment that they noticed I'm "not on my game" the way I use to be. They weren't being mean. It's a simple fact and it's true. I'm not right in the head and I know it. The endless up and down of this MS condition is hard to handle some days. Most people don't notice it but those who are close to me see the changes. If I'm not on my game; then what is my new game and what is my game plan?

Stay Informed About CCSVI

2010-12-17T08:16:00.000-08:00

Here are some videos from the Albany Vascular Group, regarding CCSVI and angioplasty surgery.
Stay informed and make up your own mind.

Year End

2010-12-14T09:28:00.000-08:00

Here's a few snaps I took with my new phone . You think it would be a simple thing to do, and it is, so long as you ignore the software that comes with the phone. I wasted a precious hour of my life downloading all this junk, not realizing it is totally unnecessary. If I had a jar that I could put all the hours in that I have wasted on technology; I wonder how many stolen hours that would be? Best not think about it .

The goalie statue is in front of the Hockey Hall of Fame in Toronto. It's a tribute to Jacques Plante, the first goalie to wear a mask. Yes Clint Benedict, did wear a mask in the 1930's, but that was only to protect his face after an injury. Plante is the first to wear one regularly to prevent injury and set the standard. Now every goalie wears a mask. Yes we humans do progress sometimes to avoid doing dumb things, even if we resist at first.

The blurry Christmas tree was taken at the Christmas Market in the Distillery District. They took and old whiskey factory and converted it to condos and retail spaces. Imagine; candles that cost $36 each !!

I was in Toronto finishing my Christmas shopping. I tried hard to avoid the mall, yet had to venture there when the big box electronics store didn't have the item I wanted. That's what I get for procrastinating.
What insanity! Watch out for the people walking in crowds, listening to their IPods, text messaging, totally oblivious. People who can't even sit down for five minues to eat their food; walking around with a stinky hot dog in one hand, a coffee in the other, ignoring the " please no food or drinks" signs. I mean are we really in that much of a hurry?

The remaining photos are from different art galleries and I can't remeber which. I wasn't supposed to take any pictures, but I didn't know that. I don't get why some galleries are OK with you taking pictures and others aren't. The blue and grey picture is one that I edited in my phone to make it look like a drawing. It's a guy's foot.

Good Grief! Only ten days till Christmas. I'm a little worried about the visiting I have to do over the holidays.
My hot/cold spells are driving me crazy! Not so much because I can't cope. It's more to do with the reactions I get. I'm so not in the mood for people who will either feel sorry for me or tell me to pull up my socks.

Politics, Science, or Compassion ?

2010-12-05T20:39:00.000-08:00

Here's an article in today's Star about the New Brunswick government's decision to fund CCSVI surgery. Anyone in that province who pays to travels abroad for "liberation surgery" can apply for reimbursement. Not sure if they get all their money back or not. A nuerologist is questioning the fund saying it is a political move and not scientific; whatever that means, and figures it's always a nuero who complains whenever anyone even tries to do something positive in regards to CCSVI. Oh! and neurologists aren't political ?

The fund is only $500,000 which isn't much considering patient costs are anywhere from $20-$30 thousand.

No doctor, it isn't science and it isn't politics. It's compassion.

Hot and Cold

2010-12-05T20:10:00.000-08:00

First I'd like to apologize that I may have deleted some comments by accident. I always publish any and all comments. Usually, I like to go back and read them again after they are published but I don't seem to be able to find a couple. Have to see if I can retrieve them some how..

OK all my Christmas decorations are up and they look pretty good !! Bonus, is the ever growing display of Christmas greeting cards and postcards, thanks to my postcard club. I'll post some photos once my card "tree" is filled. I have two stands that are meant for photos but work great for postcards. One looks like a floor lamp, only instead of a shade there are steel rectangles with clips. The other looks like a big star with the same type of clips at the end of each point. It should look pretty cool once all the cards are in place.

I' m experiencing an extreme reaction to the cold ; It totally wipes me out.

It's different from the way I feel on a hot summer day. During the summer, I have to avoid going out on hot sunny days and when I do, I use frozen cold packs to regulate my body temperature . Even if I'm careful the sun and heat leave me wasted. Now, when I'm out in the cold weather, even if I'm dressed properly the cold makes me so tired. That really sucks too, because I didn't think it was possible to have more fatigue but yes, it seems there is no bottom to these tired depths.

Saturday, after walking to the hardware store to buy some plumbing supplies ( Oh! that's a whole other post) I came home and crashed on the couch. I was able to get up and have dinner but that was about it. The rest of the evening was spent in fron of the t.v. Thank goodness for old movies; they are a blessed distraction. I couldn't even manage to pick up a pen to work on my puzzle book.

That's the second time this happens. Same thing last week when I went out to do some Christmas shopping. Normally in winter I like to walk places if I can to get some exercise, which often is my only exercise. So looks like that's not going to work out . I can't afford to lose an entire day to feeling like a zombie because of half an hour of walking. AND I do mean zombie . I'll have to start using the Wii Fit again and stay with my protien diet.

Trying to think of a place in this world that has moderate temperatures but I don't think it exihists.

Christmas Busy

2010-11-30T20:27:00.000-08:00

Haven't had much time to blog Too busy with Christmas decorating and writing cards. That's the way it goes with my MS. The days of multi tasking are long over. Now I'm happy if I can do a couple of things everyday and happy when my "to do" list of little things is all crossed out.

Not impressed with all the negative comments and hostility toward my stand on MS surgery You people seriously need to get a life and quite acting like your opinions are so note worthy. " I don't support MS surgery because" "Blah blah blah". If I want negativity I just need to go to the office. Don't really need it from the MS community. So stuff it!!

Santa Claus Parade

2010-11-21T07:41:00.000-08:00

Everything you need to know about today's Santa Claus parade in Toronto I'll be watching on t.v.

Man Regrets MS Surgery

2010-11-20T20:41:00.000-08:00

Another article in the Toronto Star about a man who travelled to India to have "liberation surgery and now says he regrets it. He does admit to some improvement but I guess not enough to justify the $30,00 he spent and the pain he suffered.

Reinforces my belief that this surgery needs to be made available in Canada now!!.

Niagara Falls Man Dies From Complications

2010-11-19T06:39:00.000-08:00

A Niagara Falls resident died after complications from MS surgery Read the artice here.

My belief is that had he not needed to return to Costa Rica, due to post op complicatons, he might have lived.

We need to have this surgery available in Canada, as well as post op care .

Angioplasty Update

2010-11-16T09:46:00.000-08:00

Here's a link to a news story you can watch on CBC's The National, for November 15th.
MS patients who travel abroad for angioplasty surgery and have complications; are being denied post operative care when they return to Canada .

I can't say I blame doctors for denying treatment to anyone who has had a procedure abroad. Angioplasty to treat MS is not a recognized procedure in Canada. Doctors are in a difficult situation. They would like to help but feel they can't.

That is why we must press on to have angioplasty recognized as a viable treatment option. There are complications for some, however, out of the thousands who have already had the procedure only a handful have had problems. Isn't it like that for any treatment? Some people will have problems. I had two teeth pulled out last year and I was stunned when the dentist handed me a list of possible complications. I never imagined there were so many thing that could go wrong just from having a tooth removed. Did I hesitate to have the procedure? No and that is the my point. I had a choice. I was an informed patient. Weighing the risks, I decided to go ahead .

Shouldn't it be that way with angioplasty for MS? We the patients inform ourselves with the help of the medical community and then decide what we want to do. Instead, the choice is being made for us based on hesitation (for whatever selfish or unselfish reasons ) which means no choice.

And my fellow bloggers (if you still read my blog ) Here is quoted text from an email I received from Tim Donovan, who is in the vanguard of fighting for " angioplasty for all". My feelings exactly, but he says it so much better than me.

"Hi Everyone : Please allow me to share with you my feelings on the CBC and CTV stories yesterday about complications arising from the Angioplasty Procedure.
I made a comment on the internet in May about how I was sick and tired of being sick and tired. This started a dialogue with many of you with MS and I felt for the first time that maybe something could be done for this horrible disease. I was skeptical at first like many people , but then I started reading your reports of how improvements were taking place and that people were getting their lives back. I decided at that point to take the risk and have the procedure....I had the procedure done on Aug 5 in Albany NY with Dr.Mandatto. I cannot express in words how much better I am since then !!! I can now live a relatively normal life. I cannot walk real well yet but I can walk !! My fatigue level has gotten much better, I can stay up most of the day now.. These are absolutely wonderful life changing improvements.
I have heard many, many horror stories of people living with MS and dying with MS. That is why I took on the challenge to educate Canadians about my improvements and yours. Some people do not see the same improvements as I did, and thats just the way life is. I did not have stents. Some patients have had stents put in and everything has worked very well for them.. Some have had stents put in and are having difficulty getting back to their doctors out of the country for follow up. That is why I am telling everyone to be very very careful where they go for this treatment. The very best place to go is right here in Canada, but we are not there yet!! We will be !!! but not yet.
I have received a few emails about the CBC report yesterday. Some were negative, many were positive. We are all entitled to our opinions, but Please do not let this cause, become devisive. We must Stand together !! (pun intended). We can disagree with each other but please do it kindly and respect the feelings of all MS patients.
My feelings are this, I am not going to encourage people to get this procedure without sharing the possibility of complications arising. If people ,do not want to take that risk that is their decision. I would feel just absolutely terrible if anyone gets harmed by this procedure and I did not share the possibilities with them, even though the risk is very low. I believe that this Procedure Absolutely works, better yet I know it does !!
I would recommend it for any member of My Family, I believe that strongly in it. We must be willing to address all the issues concerning Angioplasty even if they are negative. I get excited every time another MS person gets better, so I try to keep all this in perspective. Many thousands have gotten better,probably well over 90% ( my guess ) some have not. Tell me any medical procedure that can boast these results !!
I am Not a Doctor and I wish a neurologist was doing this instead of me, but if they wont we will !!! We are going to Win, We are going to get this treatment in Canada !! If the complications of this procedure cause doctors to be concerned, they should be and so should we.
I believe we take more of a risk driving to work in the morning with our cars than we do with having this procedure done. Please be assured before I do any media interviews that I will try to see where they are going with it. We need Media exposure to educate people about this fantastic breakthrough for MS Patients.
We are Making History Today !!
I care for everyone of you, so lets fight this battle together and hope the media continues to work with us.
Until we all get better !!!

Tim Donovan

Yes Tim We should stick together!!

Reasons To Hope

2010-11-14T19:30:00.000-08:00

Here's an a news article from a couple of weeks ago that I forgot about" Bionic legs for paraplegics. It's an exoskeleton with sensors.I thought this would also benefit those with with MS who are in wheel chairs, so that is a very promising development.

Another article and a Hooray!! to Hamilton researchers at Mc Master, who have been able to turn regular skin cells into blood cells without needing stem cells to do it. It may be possible one day to use your own skin cells to custom make other cells your body needs.

And lastly, an article warning against the MS "liberation surgery" Another bunch of doctors, another medical association, telling MS patients to be patient and take the wait and see approach; with no valid arguements to explain why people should wait.

Lots of reasons to be hopeful. Even the negative stuff, because it shows that patients are exercising their rights and taking control of their treatment options.

Changing Course

2010-11-11T09:02:00.000-08:00

Rememberance Day Please let us remember that the original intention of this day is "Never Forget, Never Again" Enough said about that.

I haven't felt much like blogging lately. Fed up with all the fighting over CCSVI and angioplasty; I avoided even looking at my blog.

I will continue to post about CCSVI and angioplasty, and will continue to support "angioplasty for all" Will continue to cronicle my cannabis use, but otherwise, I will go back to the original purpose for my blog: A written record of my MS experiences.

Good bye to all the so called experts. I found myself falling into that trap. The guy who wrote the blog
"Multiple Sclerosis Sucks " is so right about the pitfalls of blogging. He really has the different types of MS bloggers pegged right. What a bunch of self righteous, imagined experts we are, standing on our little soap boxes. Notice I said we.

How easy it is to sit here and write without ever worrying about being challenged in person. Don't like a comment? well just delete it or trash it. Feel like putting another blogger down? Go right ahead because unlike real life, there are no consequences. Hey! people stop reading your blog ? Who cares, there will always be the safe, comfortable circle, or like minded folks who will cling to you. They will continue to give you awards and you them. A mutual admiration society.

Doesn't matter if what you preach is unfounded, unproven, or flat out lies. So long as you don't go after the big guys, things will be fine. You don't have to worry if your so called medical expertise is a bunch of quakery either, because there are so many desperate souls out there who are looking for even the slighest crumb of possiblity. They will try anything and everything in the hope that it will work.

Solidarity ? Forget it. Everybody is too caught up in wanting to be right Damn the truth whatever that is.

Goodbye to all that
My astro forecast got it right

Libra- Thursday, November 11, 2010

Your insightful nature reveals issues that often are best kept under wraps. This ability carries a high level of responsibility and requires great deal of discretion. Letting out what you know about someone now is necessary, but it needs to be done at the right time and in a delicate manner.

To Diane With Love

2010-11-01T09:27:00.000-07:00

Dear Diane at A Stellar Life. Here is my rebuttal (in red) to your post regarding CCSVI and the "liberation surgery"

MS: Enter The Decision Zone

"Decisions, decisions, decisions, MS causes me to suffer from DO (Decision Overflow). Now I need to decide what I believe about the much talked about MS "miracle cure" CCSVI (Chronic Cerebrospinal Venous Insufficiency) surgery. A little balloon in a vein and I'm on my way to recovery! I've always liked balloons"

This flippant comment does nothing to help anybody but Hey, It's your blog!! I have never heard of "liberation surgery" being called the miracle cure. Anyone who claims such, is irresponsible.

"In 1990, I had to make a decision about going into the Copaxone trial. That would be the first of many therapy decisions I have had to make. I hate this process because I never feel I have enough data to make a good decision. Nothing offered ever makes complete sense. Nothing but keeping up with general good health habits like diet and exercise and basic body testing."

There is tons of information out there about CCSVI which I would be more than happy to direct you to.

At least you had the opportunity to decide; for better or worse. We, who want the surgery are being denied this.

"CCSVI is not passing my test. I have to use all the information I can collect about it, then think about my and other's (I know IN PERSON) MS experiences. Blogs are helpful, Wheelchair Kamakaze has a fantastic post about CCSVI here. My local TV station ran a story about some people from Seattle who are demanding it and the thoughts of my (so far) favorite neurologist.
So it's not passing your test. How did you test it? Why throw a wet blanket on it? Nobody is saying you have to have the surgery

Here are some unanswered/mysterious questions that need an answer to pass MY test:
Why is myelin never mentioned? I thought MS was like electrical wires with the insulation being torn off, thereby causing shorts. I'm not hearing how CCSVI will repair myelin, even though my own body once repaired it. No talk of MS being a CNS (Central Nervous System, which includes brain, spinal cord, and every nerve.) attacker, just a lot of talk about plaques in the brain.
I had a HUGE plaque in my brain in 1990, but by 1993 it was completely gone. Where did it go? Docs have no clue. So who can say a drug or CCSVI repair can make fewer plaques? Fewer than what? Fewer than how many?

Myelin is not mentioned in regards to the surgery That is correct. The surgery doesn't repair Myelin, but doctors think it may reduce Myelin damage. It might not, but so far nobody else can claim that the common MS treatments repair or prevent Myelin damage. Myelin repair is an important avenue to explore and maybe the eventual cure. But isn't it just possible that just Like MS is different for everyone, so might the treatments be?

The people who had gathered to speak in favor of CCSVI (on the Seattle TV show) were all sitting on bleachers just fine, no wheelchair in sight. What was their MS stage? Newly diagnosed? Relapsing/remitting? If so, I am back to same problem I have with the DMD (disease modifying drugs)--MS naturally relapses (goes away) in the majority of new cases, sometimes never to return.

No wheel chairs at the Seattle TV show? Lots of them at the rallies I go to AND lots of those folks have had the surgery and say they feel better. I know because I have talked to them No it hasn't helped them to walk but they seem happy with the results and that is good enough for me. Some claim they are able to get out of thier chairs and move around with a walker or cane for a spell.

CCSVI does not help everyone with MS. Why not?

No it doesn't. They don't know why, just like nobody in all the years of research and billions spent, can explain why some treatments work for some but not for others. Heck they still are no closer to knowing what causes MS, but maybe, just maybe,CCSVI research will lead to an answer.

"The Youtube videos show people walking quite loopy. How were they before and why wouldn't they all have taken a "pre" video? I NEVER walked loopy. I was slow and sometimes the leg would not lift or foot drop, but the walking I have seen is...interesting. I base this not just on how I walked with progressive difficulty, but also have watched friends with MS as they would attempt to walk with cane, walker, commando. Sure, I know everyone is different, but wouldn't I have seen ONE friend walk in such a manner? I have seen people with OTHER diseases walk like the YouTube videos, but it seems to show either a strange walk or a perfect walk. The perfect walk after DX, I have done. I even ran one day! (Last time I ever ran too.) All this years after DX, while 6 years after DX I could not MOVE from chair to table just 3 steps away. IV Solu-Medrol and I was back A-OK and that full body numb never returned. (The full body MS-numb kept me from walking.)

In other words, YouTube is not verifiable.

You doubt the veracity of the Youtube videos? Once again I say if people think it has helped them that is good enough. So you have never seen anybody walk that way? Not until you have seen the way every single person with MS walks, will you be able to say that nobody walks that way. What possible reason would these people have to lie? Nobody is making big money off of liberation surgery. In fact some doctors were doing it no charge, that's how much they beleive in it. That is until they were threaten with losing their hospital priviliges I don't see Dr. Zamboni getting rich.
I don't rely on Youtube for facts. I have seen several news shows with folks who claim it has improved their walking and I beleive them.

People are rushing to decisions. gives me time to see their outcome. Researchers need to use proven methods to test this new "miracle." People live with CCSVI and have no symptoms of anything, according to vascular doctors it is not terribly uncommon, our veins are very small--it happens and the blood just uses another vein.

Yes people are rushing. What have they got to lose from having a well tested, inexpensive, safe surgery? A surgery that is used to treat all sorts of illnesses and has the potential to treat many more? Ask Dr. Zidanov in Buffalo. He will be happy to tell you about his promising research to use the surgery for many things besides MS. Angioplasty is nothing new. Heart patients get stents all the time.Over and over if they want; regardless if their heart disease is caused by an unhealthy lifestyle. You can be fat, smoke, drink, and not exercise,and can get as many stents as you desire, but I can't?
People are spending thousands of dollars monthly for drugs that don't work They aren't allowed to spend a few thousand to have a surgery they think might help them? Does that make sense.

Off point, but why are people with MS so fear driven upon diagnosis, while the rest of society doesn't seem to care so much? If MS is so horrible (and it IS) then why can't the places we donate money to make this a priority---awareness of the horror? Instead society has been treated to stories and photos of those with MS who scale mountains and star on TV shows and do just wonderful things! People who live with normal course MS need to be shown, in our eventual wheel chairs with pee bags at our side.

I have no answer except to say that is exactly why people are fearful. Because nobody gives a damn!!

When I was diagnosed all anybody wanted me to do was go to a shrink and take about 5 different kinds of drugs. Now they tell me to slow down and be cautious about this surgery Why? It's OK to poison myself with unproven drug therapies( prove to me they work, they don't) but I should sit back and wait five, ten years, until they have more proof the surgery works?

Fearful. Yeah I'm fearful because ever since I came out with my MS I have been treated like crap by people who should know better, but don't.

Why do some people with MS not have CCSVI? Who can say CCSVI is not just another symptom some MSers get? Why do some people with CCSVI NOT have MS? Too many unanswered questions for me to make a decision right now. Am I running out of time? Well, in 1990 at my DX, I was told people with MS by and far have a normal life span, minus a few years. I am secondary progressive and haven't had a relapse in 6 years. The progression is slowing pretty good and I am even improving in the last year. So...

So... we all know that MS is different for everybody, but once again this is not a valid arguement to postpone having surgery" IF A PERSON WANTS TO!!" The research suggests the majority with MS do have CCSVI. Some tests did not follow Dr. Zamboni's protocols and that could be why some are showing as not having CCSVI.
Who can say CCSVI isn't just another symptom? You're right however, that's still not a reason to say I should wait for the surgery.

Of course, if you follow my blog, then you know I am not surprised neurologists don't want to refer patients for testing. Nor, am I surprised that this whole idea makes BIG PHARMA sweat injection needles! Both stand to lose a pile of money.
Yeah agree with you there. Which gives me more reasons to support the surgery.

"Another decision. Just another day with MS."

No it's not just another day with MS. So much for solidarity. If you don't want the surgery Diane that is fine .

Your post only causes more doubt, more cynicism, and does nothing to help. You don't want "liberation surgery" move over and get out of the way of those of us who do.

I am supporitng a class action suit against my government that denies me my rights under the health act
I am not a child, I am an intelligent woman and I think angioplasty might help me.

I am so disappointed in American bloggers who either ignore CCSVI or brush it off. I have already deleted several MS "expert" blogs that push the drug mantra or tell me to do yoga. Why can't you respect those of us who believe in angioplasty and help us get the right to have it done? If you don't want to help kindly shut up and let us get on with it.

FATIGUE

2010-10-28T07:31:00.000-07:00

FATIGUE !! Yes in big fat capital letters. I'm not yelling; I can't, because I'm too tired. Yet tired isn't the right word. Wasted seems more appropriate, and lassitude : "Languor","disinclination to exert or interest oneself".
I'm disinclined because I don't like starting things and not finshing them. Too many half completed projects, stuff piling up, jobs postponed, makes me edgy, makes me feel like a failure.

But what can I do? If I sit quietly and watch a movie, I am so aware of how weak I feel. I get up, start doing something, and become even more aware of how weak I really am. I do my job and after a couple of hours; lose my concentration, feel like the life is sucked out of me. I know if I put in a full day, that my evening will be a complete waste and I'll be back on the couch watching a movie. And around and around I go.

There are no words to describe what a crappy feeling it is.

I avoid those who tell me to perk up, take more vitamins tell me I'm feeling sorry for myself, or that I'm lazy etc. etc. You know; maybe I would be friendlier if you would just quit bugging me. What ever happened to being there for someone, just being there.

Now I feel disinclined to go on with this post because it serves no purpose. That doesn't mean I'm giving up
No, I'll keep going. I just need to take lots of breaks and I hate that.

Canada Is OK

2010-10-20T07:16:00.000-07:00

This morning I was getting my usual international news fix from BBC World. There was much discussion of the austerity measures in Europe. I thought I was hearing things when a critic of the British plan complimented Canada (and Sweden) for sound fiscal management. Yeah that's why out of all the big economies Canada is doing OK.

It sure was a different story a few years ago when Canada, was mocked for having too much state intervention in the banking sector. The Liberal government of the time was harshly critisized for not allowing bank mergers and all the other crap that now has most countries in a tailspin. The mantra just a few short years ago was" let government get out of the way of business so they can do what they must to make money" Gee that didn't work out so great did it?

I remember the Wall Street Journal describing Canada as a" bankrupt third world country" Oh Canada with your socialized medicine and your welfare state. You pot smoking gay commies!! You are headed straight to hell!

If this is hell , stoke the fires, and let us burn, because it feels pretty good.

Britain is going to cut half a million public sector jobs. Where exactly are these people going to find jobs and how is that going to improve Britain's economy ? Yeah put on your fast food uniform and do your bit to help
your country.

Last week I voted in favour of a new work contract. A modest raise and another day off. Not bad considering whats going on elsewhere in the world. I'm just glad I'm hanging in, can still work, and still have a job.

In November I'm going to a conference about CCSVI and MS. I was invited by the hospital In Albany, NY where I signed up for clinical trials. Don't know what else there is to talk about but I'm willing to listen.

Wonder Why I'm Cynical?

2010-10-14T07:04:00.000-07:00

What a way to start my morning reading this article in the Toronto Star.

Oh MS Society!! What will you do now that even your board members are going overseas to have CCSVI surgery, while you side with others to deny Canadian MS patients this very thing!!.

You have lost your credibility.

Garlic Thanksgiving

2010-10-12T08:04:00.000-07:00

What a beautiful Thanks giving weekend! The weather sunny and mild, perfect for walking AND no need for cooler packs !! I managed to climb the 165 stairs from the harbour trail to the street. OK I needed lots of breaks, but I did it.

My turkey and pumpkin pie turned out great if I am allowed to compliment myself. The only downer was yesterday with me dropping the remaining pie and breaking my good ceramic baking dish. I drop things all the time and with ceramic tile floors that means lots of broken dishes. I don't know if that's an MS thing. I do know that my hands aren't as strong as they use to be.

I did as Mr. Carrot asked; planted some garlic bulbs. Looking forward to my crop next summer, even if I'm not looking forward to the hot humid weather. Yes this summer was a challenge. I would never have survived without air conditioning, which worries me. What happens when I can no longer afford the electric bill that is going up more and more?

My last bill for August and September was a real whopper. We have a new billing system called "Peak Saver" where they give you a chart showing "peak"" mid peak" and "off peak" hours. "Peak" costs twice as much as "off peak". That's fine if you want to save money running certain appliances, like using the dishwasher after 9:00 p.m. The air conditioner usually runs during peak time and less during off peak. That means big bucks to stay cool. In future it may be necessary to lobby for a discount to those of us who really need air conditioning to survive?

Now some of you might say that cool air is a luxury, not a necessity, but I'm telling you that the heat was a killer for me this summer. The only way I could go out for a walk was if I my clothes were stuffed with cold packs. Even then there were some days when I just couldn't do it. Forget about going out mid day; impossible, unless you want an ambulance picking me up. Yeah that's how bad it is.

OK so now winter is coming and I will have the heating bill to complain about. Are there any places in the world with moderate temperatures?

So Much Art

2010-10-05T09:15:00.000-07:00

Here's a few shots from the James Street Mega Art Crawl and Nuit Blanche in Toronto. I needed a few days to recover after each event (more on the return of super fatigue later). Soul food does me good and what better soul food than art? Huge murals and fire were the themes that stood out most. There was a multi media event at Toronto city hall featuring Neil Young and many other musicians in "Later That Night At the Drive In" The crowds were so massive though, I couldn't get any photos. Good to know an old guy like him can still rock and sound fresh.

Everybody wants to be Michaelangelo!!

A cut out!!

Another Mr. Carrot!!

A Vocal Minority?

2010-09-25T07:57:00.000-07:00

Here's another article about the angioplasty backlash
Ahh! poor doctors. Their patients are angry and vocal about not receiving treatment. An angry minority.

I don't think we are a minority, but yes we are angry. Angry because all those years you claim to have dedicated to finding a cure have resulted in NOTHING!!!!

Nothing except more drugs!! Youv'e never had to justify your research; wether it is leading to anything promising. You've never been scrutinized and attacked the way Dr. Zamboni has been. Never had to prove that any of the drugs you prescribe actually work.

We, the MS community, are too quick to embrace this new therapy? Well dear doctors you were too quick to dismiss it. You blame the media for causing this controversy? Well you didn't waste any time grabbing national headlines calling CCSVI a hoax, only to back track a week later because you might be able to score some research dollars. Ha! you tell MS patients about the dangers of angioplasty? Oh we might get a blood clot? You aren't vascular surgeons, you are nuerologists. Stick to what you know, which when it comes to MS doesn't seem to be a whole heck of a lot.

Yeah some patients are afraid to speak out because their doctors will dump them if they dare even ask about CCSVI.

Please answer this question dear doctors and then maybe I will shut up about angioplasty Tell me what have I got to lose having this treatment? AND then tell me what you have to offer that is better.

The Latest MS News

2010-09-21T08:50:00.000-07:00

Here's an article about the rally on Parlaiment Hill yesterday I wanted to attend this rally but I wasn't up for a five hour drive to Ottawa. Gee what do you know? The health minister had a previous engagement. She should be sacked for her whishy washy bungling of this issue.

Here's an editorial from the National Post about allowing MS patients the right to have angioplasy. What really annoys me about this editorial is even though it's calling on the governemnt to do the right thing, the writer is ignorant of the facts. First of all, we know that angioplasy isn't a cure for MS, secondly, this research and procedure are only controversial because the medical community contines to make bold claims it doesn't work, and thirdly why the heck should I have to pay for this procedure when we have universal healthcare, which I pay plenty for. At least the editorial supports allowing patients to go ahead if they are willing to pay, which I am. I just don't want to go to a foreign country to have it done.

Consider this: If people are allowed to pay to get boob implants and are covered to get an elastic band wrapped around their stomach to lose weight; why can't I be alowed to have a simple operation to improve my health ? Did they have clinical trials for breast implants?

The MS community is not a bunch of dim witted incompetents. We are well informed, have an excellent newtwork, and we care about each other! Stop treating us like dummies!!

Lastly I need to come up with an idea to raise money for the class action suit. It's going to be rough what with all the fake charities being uncovered lately. Anybody have ideas?

The Season of Fairs and Festivals

2010-09-19T09:43:00.000-07:00

You know Fall has arrived when all the fairs and festivals come along one after another.
I'm a little late posting these photos of last weeks Locke Street Fesitval, which is right around the corner from my house. Mr.Carrot, wants us to plant garlic bulbs this Fall. He says 90% of garlic is now imported from China. It's an example of how we are losing control of our food supply . So go ahead and plant a garlic bulb. Mr. Carrot says even one that originated in China is OK. If you want more info checkout www.Hamilton350.com/events

Who's Misinformed?

2010-09-14T18:07:00.000-07:00

Federal health minister Leona Aglukkaq, accuses the media of spreading misinformation on MS research funding!! Read it here

Maybe if the Federal and Provincial governments, the MS societies, and the healthcare community, would make up their minds, quit back pedalling, and being so damed wishy washy, there would be less confusion.

Don't blame the media for the mess you have created by raising people's hopes only to have them dashed time and again. Hmmm, I wonder if all those petitions and a possible class action suit have you in a tizzy, so now it's time to play the blame game.

MS patients aren't going away. We've got nothing to lose and we aren't going to give up on a procedure that might buy us more time to live a decent productive life.

And I ain't spending my money going to a foreign country for something I pay for right here in my own country. It's called universal healthcare stupid !!! Do you even know what that means?

AFA Web Conference September 16th

2010-09-12T10:24:00.000-07:00

On September 16th Angioplasty For All, will be hosting a web conference regarding preparations for litigation against the Ontario government. The litigation is necessary to ensure that this procedure, Angioplasty, is made available to all MS sufferers, in our own country. Under the Health Act, the government and any of it's bureacracies, have no right to deny us this choice.

Join the discussion, submit a question, donate, inform yourself, spread the word.

Lack of Vitamin D: The Culprit Again?

2010-09-09T17:25:00.000-07:00

A study linking lack of vitamin D as the cause of schizophrenia. How many illnesses is that now?

Petition and First Signs of Fall

2010-09-04T09:37:00.000-07:00

Been busy trying to get signatures on a petition that will be presented to Parliament on September 20th. See the deails here. Maybe get one going too if you live in Canada.
If it doesn't work, I'm getting a lawyer. I don't have time to wait for a bunch of greedy opportunists messing with my life.

The weather has really cooled down and I'm loving it! I know for most people it's disapointing for the last long weekend of summer to have stormy weather and cool temperatures . Well, it's going to get hot again next week The Fall forecast is for above normal temperatures so I 'm going to enjoy this break from cold packs and sunscreen.

Here are a few photos showing the first signs of Fall along with an impromptu sculpture made by an unknown trail walker. We are also promised amazing fall colours this year as the trees had plenty of sunshine and water .

Bad Sucking News

2010-08-31T14:58:00.000-07:00

I am so bummed out over this news report This sucks, sucks, sucks. Here's how they justify it. The so called experts, don't even want to allow clinical trials for CCSVI. So now all we have left is a measly $2.5 million spread out over all of North America for this research. They keep insisting, these experts, that we should be cautious, be patient.
Why? Why should we? You would think that the possibility of a simple treatment, all the MS Societies and all the experts come out with both guns blazing, but No! they take the typical whimpy approach. Hah! try and tell me it isn't political. That the lobbyists and the special interests didn't use their influence to stall this initiative because they might lose some money , might

We have billions to spend to drop bombs on other people, but no money to save lives in our own country!!

Marijuana For Pain Relief

2010-08-30T14:54:00.000-07:00

Another study that indicates marijuana is beneficial for pain relief, as a sleep aid, and in reducing anxiety.

The article mentions that many people can't tolerate smoking marijuana, are concerned about the effect on their lungs, and second hand smoke . Haven't they ever heard of vapourizers?

Lazy Post

2010-08-26T19:40:00.000-07:00

Here are a few pictures. I feel too lazy to write anything. It's the hangover effect of being in the office yesterday.
Me at the August Art Crawl, a view from the harbour trail, and some interesting tree roots .

Heaven/ Hell?

2010-08-23T10:08:00.000-07:00

Yesterday I was reading Listverse(over there on the right->) "Top Ten Works of Christian Fiction" There was mention of Dante, which got me thinking about Heaven and Hell, or rather what I think they are. Dante thought perfection was the highest level of Heaven, pure light; and the worst circle of Hell was to be frozen for eternity.

I think it would be awful to be frozen and I do like the idea of being like the sun or a star, however my ideas of Heaven and Hell aren't so lofty.

Heaven: I would be in a beautiful floral garden near a waterfall. I would live in a cave under the falls. How many times I've seen that in movies where there is a secret hiding place behind a waterfall and I always thought it would be so cool to live in a spot like that.Chocolate to eat and Asti Spumante to drink, or rather I would imagine the tastes, as I would be an ephemeral presence; floating about.

Very few "others" in my Heaven, as I think there is some truth in what Satre said about Hell being "other people". We wouldn't be lying around playing harps all day. I think we would keep busy try to ease the pain of the living. I could use an angel like that right now!

Sorry folks, there would only be classical music in my Heaven and opera concerts everyday so if you like other kinds of music guess you'll have to make your own heaven. And what would that be? I'd like to know what you think Heaven, is even if you only say you don't think there is a Heaven.

Hell: Stuck in my grey office cubicle having to listen to the guy who always talks about golf!! For eternity! or for that matter having to play golf ! Evenings spent on Facebook or OMG! Twitter!. Always sweating and feeling like my clothes are stuck to me like the way I felt this summer. Having to eat hotdogs and drink coffee. Loud horrible "baby boomer" music blaring on huge speakers with awful DJ's and stupid endless commercials. Huge t.v. screens with terrible prime time shows or talk shows and endless commercials Everybody would be skinny and wear those awful low rise jeans with crop tops and have perfect white teeth. And it would always be hot, humid, and sunny.

So what is your idea of Hell ?

You might find these comments trivial, but no harm in imagining.

Surgery In My Own Country

2010-08-11T06:16:00.000-07:00

Here is another reason I won't go overseas to have surgery.

More CCSVI News (not all good)

2010-08-10T17:36:00.000-07:00

Here more news about clinical trials for CCSVI

I need to do a little more research about the two recent studies that found no link between MS and blocked veins. It's disappointing and hard to believe, what with all the anecdotal evidence out there from those who have had the surgery and feel much better.
It's SO HOT today!! I think the hottest day yet. My brains are scrambled

Cannabis For Migraines

2010-08-08T08:04:00.000-07:00

Here's an intersting article about an average woman who decides to try cannabis to treat her migraines. A person like me, who wasn't very keen on the idea, but tried it out of desperation.

Very similar to the result I get when I use it for my MS. The only thing that bugs me is at the end of the article they list the negatives of smoking dope. The most annoying one being that habitual use may cause a pyschological dependence. Is that any different than taking prescribed pain killers for years? or cholesterol drugs that once you start you are on them for life? Of course a person will develop a dependence on something that works for them!!

My MS isn't going away and I'm stuck with symptoms that interfere with my sleep. One of my doctors thought it was perfectly fine to prescribe: pain killers, sleeping pills, anti depressants, anti fatigue drugs(that cause insomnia) and anti spasmodics AND I was suppose to take all this stuff everyday "for as long as I needed it". I'm already a space cadet and this guy wanted to boil my brains even more. Every time I went to see him he got the prescription pad out

Well that doctor is long gone and all that stuff ended up in the toilet. Now I am happy to smoke my dope. If I become an addict, that's OK with me. Just hope they let me use it when I'm in the old folks home.

Walking Fail!!

2010-08-04T08:31:00.000-07:00

On Monday, which was a civic holiday, Simcoe Day, I went for one of my usual nature walks.
Oh how awful it was!!

It started out fine; the day was overcast, with intermittent rain, which was very pleasant to walk in.

When we got down to the harbour I started to feel overheated. I sat on a bench to cool down but nothing worked. Not my cooler packs, cold water, nothing! It took all of my wits to stay calm. I stood up and fortunately, a cool breeze from the lake helped. I stood there with my eyes closed and concentrated on that coolness. I also thought about what I would do when I got home.

This is a technique I have used all of my life when I'm in a bad situation. I concentrate on something pleasant that I will do later in the day, or next day, or even next month. Anything to get me through an ordeal and it works.

So there I was thinking about how my son had promised to make a barbecue that evening. I imagined going home, having a nice cool shower, enjoying a good meal and even treating myself to some ice cream. Great !

OK so we continue walking. I slowly climb the stairs from the trail back up to the street. I stand and look out at the harbour, once again enjoying the breeze. Then I started getting these awful pains in my feet. So sudden and so painful. I thought "What the heck is this?" Well , I was thinking in much stronger language, but have to keep the blog somewhat respectable.

I kept walking even though my feet hurt so bad, like I had these huge blisters, only I didn't. All I could do was keep walking and say in my head " I MUST GET HOME".

Now I'm sure you're thinking "Why didn't she call a cab or a friend" and I suppose that would have been a smart thing to do. At the time, all I could think was that the pains would go away and I would be fine. I also hate looking like an invalid around others, especially because my so called friends and family always razz me about my MS. My son, the only person who doesn't. He did make his usual jokes about me "putting" and "Where's the golf cart?" ( inside jokes, Sorry). That made me feel better but also cautious, because I know it means he's worried. Humour is how he copes. At that point I said that I would have an extra large dose of THC that evening!! The perfect thought to get me going again!

Finally made it home. Had my cool shower, my barbecue dinner, some ice cream, and Yes, a really huge portion of dope before I went to bed.

The next day my feet were fine. No pains. I 'm staying indoors for now. I don't think I can handle another episode like that for awhile

Is MS crazy or what?

Be Careful What You Post

2010-08-02T09:59:00.000-07:00

Another reason why I'm careful with the photos I post.

Think twice before you send and post photos, especially of children.

It's Simcoe Day, a civic holiday I'm having a great time doing nothing. My son cooked breakfast and says he will cook dinner. I could get use to that.

Walking

2010-07-31T09:39:00.000-07:00

Here's a few shots of different places I go walking. If I look cool and collected it is only because I have my shorts and top stuffed with frozen cooler packs!! The pictures are not as good as I would like. I took them with my camcorder that has a photo option. Very handy, but also very inconsistent as to the quality of the shots.

The top picture is a tree that I thought looked interesting.Located at Dundurn Castle, where you can see they are doing repairs on the stone entrance.

The next two photos were taken on the Sassafras Trail, which was closed for two years to restore it to it's natural state . Often the woodlands are over run by non native plants, most of which are weeds. The Royal Botanical Gardens does controlled burns to eliminate the bad plants and restore the good ones. They did a good job here.

Of course I had to throw in a view of the ugly side of Hamilton Harbour, where the steel plant is located. Steel is no longer the major employer in Hamilton. Like other cities, the service sector, which pays minimum wages, is now the major employer. The steel plants have been taken over by multi national corporations. What else is new? Soon there will be nothing left that is Canadian owned and operated . Do we really think we can sustain ourselves with the majority earning low wages? Half the population of Hamilton only survives thanks to government handouts of one kind or another. The other half are government workers like me. Surely that can't last. I don't know, but I don't thik we should brag that a donut chain is the fourth largest employer in the city.

Last is a view of the Chedoake public golf course. The paved trail runs right through it, which means you have to be on the look out for stray golf shots!!

Port Dover

2010-07-31T08:59:00.000-07:00

Went to Port Dover last Tuesday afternoon. Yes I actually went swimming in Lake Erie! That was the only way I could manage to stay cool aside from sitting under my sun umbrella. I read a report in the news that the beaches of South Western Ontario are some of the cleanest in the world, so I decided to end my boycott of swimming in the lakes.

Case of the Missing Swimming Pool

2010-07-23T20:29:00.000-07:00

Good Grief! I went to the swimming pool yesterday only to find it drained of water and abandoned. No sign, no message, no people around to explain why. Now I have to get in touch with the city to find out what's going on Seriously, my outdoor swimming options are becoming fewer and fewer AND I pay for this!

I consoled myself by going for a nature walk yesterday, but couldn't today. It's so hot and so humid; like walking around in a steam bath. The thunderstorms, instead of cooling things off are are making it worse. I conked out today and ended up walking at the mall, just like I do in the winter.

I know some hotels let non guests use their pool for a fee, so I'm going to check that out. When I worked in downtown Toronto I use to swim at the Sheraton. They had a very cool combination indoor/outdoor pool with glass walls. I just hope they have something like that in Hamilton. The only outdoor pool left close to me is about the size of a bath tub and there are way too many kids. Not that I don't like children I just don't like them dive bonbing on my head.

I am so itchy. Scratch! Scratch!

Summer Delights

2010-07-22T13:23:00.000-07:00

One good thing to come of this hot weather (34C today) is the bounty of local produce. Everything is early this summer, so we have yummy peaches, raspberries, and strawberries all together. I'm considering breaking my diet to make a huge Strawberry Shortcake and Peach Melba. I know I won't need much convincing.

Had my first tomato from my container garden!!

Later I'm going for a swim. My favourite way to beat the heat.

Another MS Celebrity

2010-07-20T08:23:00.000-07:00

It's cooling down out there. 28C today instead of that horrible 38C we had just a few days ago.
I had a couple more "spells" that left me in tears. Today I'm feeling not bad, not great, but not bad. I'm back using my THC, after a two month break. It's the only way I get a decent night's sleep.

OK truthfully? MS in the summer is a huge pile of suck.

AND, not enough that I feel like crap, that I have to have another perfect MS celebrity thrown in my face!!

This happened a few days ago while I was on holiday ( photos to be posted soon). I'm not a huge fan of country music; especially now that it has become almost as bland as pop music, with new songs coming out ever week, only to be forgotten the following week. I had no clue who Clay Walker was until a supposed near and dear one told me about a biography show they saw of him. AND I so hate those biographies of celebrities that tell you absolutely nothing about the person but are simply a vehicle to promote their latest song or movie.

OK I'm sure Clay Walker is a very nice guy and yes, it is great that he has his own MS foundation to raise money toward a cure ( poor misguided soul) however: I really don't need to here about his positive attitude and how well he manages his MS ( with drugs of course!!) and how he travels all over the country doing shows!

Dear Loved One: Do you have any idea how fed up I am hearing these so called inspirational stories? I travel thousands of kilometers to visit you without the benefit of my own private bus or plane, nor do I have an entourage of people to wipe my butt. No, I travel with all the other peasants on crummy planes, get pushed and shoved and man handled, through check in, customs, immigration , shuttle buses, to come and see you.

It's hot out and I don't feel good, but I really am trying my best to keep a grip on things. Hey! this celebrity is coping so well with MS. Good for him. Why do you feel the need to mention him and his great attitude?? What purpose does it serve? The way I take it is that you don't think I have a postive attitude and just like everybody else, you think I'm not trying to get better.

I pray you never have anything like MS. I pray that you never need people to give you a break and just accept that there will be days when you feel horrible and can't do anything.

Get this straight. MS sucks and it sucks big time. You think I'm cynical? Fine. All I know is I get up every day, face my responsibilites, and get on with my life. I actually do enjoy life but not all the time. If that isn't good enough for you, too bad. I refuse to be the nice little girl who smiles and is just "Oh so happy" to have a crap condition like MS . I'm not at all happy about it, in fact I'm quite pissed off about it. Most of the time though you will notice that I just keep my mouth shut and carry on. You will also notice that I rarely ask for help because you make me feel like I don't have the right to ask for any. This is Love?

You want cynicism? I'm sorry to say that Mr. Walker will go the way of all the other celebrities who tell us to take our meds, drink juice, exercise, think positive, meditate, pray, etc. etc. His illness will progress as it does in all of us and there ain't nothin he can do about it.

So that's my whine fest for the day. I promise to post photos soon

The MS Blues

2010-07-13T17:13:00.000-07:00

Just returned from a trip to the Southwest U.S. It's as hot in South Western Ontario as it is down there, so I decided to go for it. I'll post some photos as soon as I figure out how to get them off my mini camcorder. Yeah I bought a JVC Everio, which makes movies and takes still shots. Handy item and so far very easy to use.

Speaking of hot weather; it really is messing with my head and my body. MS sure doesn't like the heat and neither does menopause. I feel like a big vat of sweat all the time.

Heat related symptoms include : losing my memory, confusion, anxiety, muscle spasms, and worst of all; totally losing control of my bladder . I know it isn't regular incontinence since I'm OK 99% of the time, even when I go for long walks and go up and down the stairs.
,
Two weeks ago, I was out walking and out of no where I peed my pants. Not just a little bit, no, I was gushing and couldn't stop it. The day before I went for a very long walk and felt nothing except that walk was only supposed to be 15 minutes and ended up being nearly an hour because I couldn't remember where a restaurant was. Hey ! I had only been to the place a few days before and it is in a neighbourhood I know very well. That evening when I got home I couldn't remember where two very important items where. I was confused and had this weird anxious feeling. That same day at work I couldn't remember what floor I worked on. I had only gone up one floor to IT services to get my computer fixed. On the way back I got off at the right floor only I was certain I was in the wrong place. Luckily, two co workers got off another elevator and I followed them.

The muscle spasms are strange; like mild electric shocks. My toes curl up too

How am I coping? Well taking time off work helps. Even though I'm taking a big hit financially, I don't care.
I'm allowed five weeks off without pay, over and above my paid vacation. The payments are spread out over a year. I'm having trouble coping, even working at home in an air conditioned house. I just need some time to do things I enjoy and do them when I feel like it. On my holiday I spent lots of time swimming . Lucky? Yeah I'm lucky. I know.

Tomorrow I'll talk about crummy remarks about my MS, made by people who should know better.

The Protein Diet

2010-06-30T20:49:00.000-07:00

For about ten days now I have been on a protein diet. I just wasn't able to stay on a regular diet, so I thought I would give this a try for just a few weeks. Yeah I know it's not supposed to be good for you, bad for the kidneys and all that. Well I did my research and it's only bad if you already have a kidney ailment or heart condition. I'm doing the modified diet that includes vegetables and salads with a maximum of 100 grams of carbs per day.

So far the results are good. I have no cravings, no hunger pangs, and unlike other diets, I don't spend my day thinking about food. It's been fairly easy to follow, although I have to say it's not something I could do for a long time. I love pasta and sweets too much to give them up forever!!

Yeah I know a moderate diet and exercise are the right way to go These days that regime isn't working for me and I am packing on the pounds. My clothes are so tight and I refuse to go out and buy new stuff in a bigger size. This week I was able to get into a pair of shorts and do them up easily; couldn't last week.

OK, so I will most likely gain all the weight back, but that happens with every diet.

One unexpected side benefit: My teeth feel so clean!!

Niagara Falls Summer

2010-06-27T19:43:00.000-07:00

Went to Niagara Falls today. Here I am with Oscar and a couple of tall fellows.

Harbour Walk

2010-06-26T21:26:00.000-07:00

Yesterday was my first walk this summer down by the harbour. Beautiful weather with geese and folks having a great time.

CCSVI Research

2010-06-22T19:30:00.000-07:00

Follow the link to see a list of researches who have received grants from the Canada and U.S. MS societies to
study CCSVI

Looks like the establishment is keeping with their slow poke conservative ways. No matter how many times they try to explain the need for more research I'm not buying it. Let me have the operation !!!!

Britain Approves Sativex For MS

2010-06-21T20:29:00.000-07:00

Read about Sativex, a cannabis based drug, as an MS treatment. It is available in Canada but not specifically for MS pain

I'll stick to the real stuff because I know it works, however it is good to know there is an alternative pain remedy out there that has fewer side effects than traditional pain killers.

Return of the Prodigal Son: Sort Of

2010-06-19T18:52:00.000-07:00

After nine months travelling the country doing volunteer work with Katimavik, my son has returned home.

Three months in a small Nova Scotia town , helping to set up and run a community radio station, another three working at the Aboriginal Friendship Center in British Columbia, and lastly, three months in Quebec working for Agape.
He also had to take turns as house manager of a group of ten people. Planning meals, shopping, and preparing the food, as well as clean the house.

I cried tears of joy, when I read the beautiful refernce letters my son received from each employer. I am so proud of him and his accomplishments in the program. How much more conifident he is and Wow! mature.

If you know a young person in Canada, between the ages of 17 and 21, tell them to consider checking out Katimavik. They are provided with room and board and a daily $3.00 stipend. Travel costs are paid and after successful completion of the program, the student receives a $1000.00 toward school.

The only thing he missed was eating meat, because the majority he lived with were vegetarians.
I bought lots of steaks and chicken to celebrate his return !!

Moldy

2010-06-17T18:21:00.000-07:00

Found out I've been exposed to a heavy dose of mold spores and other dust borne junk. Oh do I ever feel terrible !!

Some good news Dr. Zamboni spoke at the hearings of the Neurological Diseases subcommittee in Ottawa yesterday . If only all doctors were as devouted as him. He gives me hope and maybe Ottawa will listen.

Now What?

2010-06-11T21:47:00.000-07:00

A late night for me. I'm watching "Bride of Frankenstein" after returning home from an uneventful Art Crawl on James St. My friends went to the Art Bar, but since my recent alcohol adventures I gave it a pass and decided to come home annd have a cup of Earl Grey tea.

It's been a week of me feeling very disappointed in my fellow human beings. All the foot dragging over CCSVI research and surgery, has me really bummed out. Even if I want to pay for the surgery I can't have it done here in North America. Slowly, one by one, every clinic, every doctor, has stopped doing testing and surgery, even private clinics. Will I really have to go overseas to have it done?

I guess I'm feeling crummy about it because my muscle spasms are back. They remind me that my MS is ALWAYS there, and will never go away. Oh how it does love to play games with me.

The week was also one of frustration with noise problems in my neighbourhood. Buck passing by all involved, including the politicans, who supposedly represent me and my fellow suffers of the constant racket by idiling trains, leaf blowers, and barking dogs. I'll spare you the details except to say that just because legally you are permitted to do something doesn't mean you should go crazy doing it.

Lastly: Wednesday evening I went for a pedicure. While I was there a women came in with her two daughters for their "make over". I mean seriously? Do ten and twelve year old girls, really need facials and manicures?

The Alcohol Experiment

2010-06-06T18:53:00.000-07:00

This post is about a strange thing that is happening to me regarding the effects of alcohol, or rather the no effects.
I would appreciate comments or feedback, especially if anyone has had a similar experience, or is aware of any documentation of others who have.

In the past few years I have rarely had any alcohol, as it made me feel so sick. The sensation of being even mildly drunk was awful. I would get a hangover from just a couple of drinks. It just wasn't worth it .

Recently a friend invited me out to dinner. She recommend a red wine to go with our meal. I decided not to make a fuss and agreed to ordering a bottle of this wine. I had two glasses of it and didn't feel a thing. Then I had a third and still nothing. I wrote it off to it being a very mild wine, small glasses, and the fact that I drank it with food. I was certain I would pay for it the next morning with the usual headache. Nope, not even a twinge of a headache or sick stomach.
We did the exact same thing a couple of night later and I had the same experience.

A week later after work, this same friend asked if I would like to go for a quick drink after work at the local pub. I thought what the heck, since I had handled the wine so well . I had two bottles of beer this time with no food. Once again, didn't even feel the slighest buzz, so I had another. No ill effects the next day either.

OK, so this past Friday night we went out for dinner again with a group. I had two vodka and tonics.
We didn't enjoy the food so we decided to go to another place nearby for a night cap. I had another two vodkas. The last drink, the waiter warned me that he hadn't measured so it might be a bit stronger and he brought me extra tonic for it. Yeah, no kidding stronger. I'm sure it was close to a double, so that makes almost five drinks in a couple of hours and I DIDN"T FEEL ANYTHING!! The next day same deal, no ill effects.

Now I have experience with drunkenness, so I know what it feels like and I'm telling you I felt nothing. It was like I had been drinking water all evening.

I'm not planning to become a drinker. I simply pushed myself to have those drinks because it was so strange to feel nothing, when normally I'm buzzed after one drink .

More weirdness in my life The experiment is over, because I am a little freaked out by this.

Are my brains so fried that I no longer feel anything?

Subcommittee on Neurological Diseases

2010-06-01T10:00:00.000-07:00

Today the Subcommittee on Neurological Diseases will be holding hearings at Room 752, 131 Queen St.

Ottawa, ON.

Dr.Sandy McDonald and Mark Haake will be testifying in support of CCSVI Testing and surgery. A demonstration will be held from 11:00 to 3:00 in support of them and this research .

Really wish I could be there and lend my voice to this vitally important cause . I'll be watching and listening with keen interest.

Today the way I feel, I'm so frustrated that I'm not even allowed to try this surgery to see if it can help. The heat is killing me and I've staying indoors, which really sucks. Can't type anymore I'm way too tired.

Montreal

2010-05-24T18:53:00.000-07:00

Spent the Victoria Day weekend in Montreal, that will be remembered for the Canadiens losing to the Flyers in the Stanley Cup finals. Churches and sex shops side by side. Lots of graffitti. Very cool exhibits at the Montreal Museum of Contemporary Art

Paint Job Part 2

2010-05-19T15:48:00.001-07:00

It's a hundred times worse than I could ever have imagined. My house is a total shambles. The paint job is looking good though.

Check out this fully accessible pay toilet in Toronto We need lots of these!!

Paint Job

2010-05-17T09:22:00.000-07:00

Not sure how much blogging I'll be able to do in the next couple of weeks I'm having my house painted inside and out! This is something I have never done before, so I'm not sure how it's going to work.

In the good old days this is a job I use to do myself, one room at a time, at different times. MS put an end to that!! Now I'm having to pay to have the work done and figured I may as well get it all over with at once.

When I moved into my current home it had the strangest wallpaper everywhere. Imagine; shiny brown vinyl swirls, covered in big orange roses, or shiny white vinyl swirls, covered in giant lillies, trimmed in silver. Add to that glossy white painted trim and a brick fireplace painted in eye popping white gloss paint. Yes that was my dear little home when I move in. Oh yeah and the three different blue floral papers in the kitchen with a contrasting wavy blue border!! Oh wait! I have to mention the pure white carpeting that was dirty from you just looking at it. How sweet was my bedroom immersed in pink roses!!

Amazing when I got rid of all that junk, which took me nearly a year of weekends and evenings; that the place looked pretty good. Under the crazy carpet, decent hardwood floors that just needed a good cleaning.

Then MS hit me really hard. All the work came to a dead halt. I still have unfinished laminate floors that need to get done. One day I got up and I couldn't do anymore, spent a weekend in bed from awful dizzy spells, and that was the end of that.

Now I'm just waiting on the paint guy to show up in order for me to pick colours. I really have no clue what they will be. Stay tuned.

Niagara Postcard Meet Up

2010-05-16T21:00:00.000-07:00

Cynic vs Alcoholic

2010-05-11T06:22:00.000-07:00

Return to winter here and I'm not liking too much. Ok I was silly and got carried away making up containers of plants for the veranda. The last few weeks have been so mild how could I resist. Now I'm having to drag them in every night or risk losing the works to frost.

Haven't felt much like blogging these past few days. So much to think about after that demonstration last week. There was much good news but that was outweighed by the bad. All the doctors in North America who were offering the surgery, some of whom were doing it no charge, have stopped. So have all the clinics who were doing testing for CCSVI. There are various theories as to why, which I won't get into except that it is my feeling they have been pressured by the establishment to stop.

When I was at the rally I did speak to the small, but very vocal crowd. I waved to the cowardly politicians sitting behind closed curtains in parliament. I challeged them to ignore the lobbyists and drug companies. I challenged the MS society to honour the wishes of the people who support them. I made it very clear that I would not give them another dime of my money if they did not give more money to CCSVI research. I stated that it was ridiculous for people to travel to India to have surgery to unblock their veins, when Canada has one of the highest rates of MS in the world.!! And so on and so on, me and many others spoke, and shouted, and made noise. All over Canada there were similar demonstrations.

It must have had some effect. The MS Society has annouced that they will be asking the government to allocate $10 million to CCSVI research.

Afterwards I felt so drained I went home and crashed out.

The next day I was telling a friend about the whole vein thing and my feelings of frustration toward the medical community. She went on about how I should be more positive and then proceed to tell me about different ways to achieve this.

Please note: I am not intersted in yoga, meditation, new age philosphy, special diets,and self help books . If you find them helpful that's great. Interesting that you need a whole lot of booze to go along with it.

I prefer to be a cynic rather than be an alcoholic. It works for me.

Oh yeah and the MS Society of Canada bought the web domain www.ccsvi.ca Hmmm wonder why?