An MS Christmas Story

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

Another CCSVI Story

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

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

Year End

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 ?

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

 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

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

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

Man Regrets MS Surgery

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

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

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

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

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

 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

 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

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?

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

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

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?

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

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

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?

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

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?

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

Petition and First Signs of Fall

 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

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

 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

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?

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

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

More CCSVI News (not all good)

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

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!!

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

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

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

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

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

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

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

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

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

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

Harbour Walk

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