Feeling the Generation Gap Part 2

OK so I can't figure out how to edit in the new Blogger  I'll keep trying.

In my last post I didn't address the Generation Gap; which I experienced for the first time  at the James Street. Art Crawl.

The people in the photo below  are opening a juice bar. As a promotion they were offering samples of a drink that was green and kind of slimy looking. When they offered me some I joked and asked if it was a new version of "Soylent Green"  They had no clue  what I was talking about. My son laughed because he knew, but that's because he's use to his mother watching weird movies all the time.

No  interesting art  that night. Here are the  Hammer City Roller Derby Ladies

Feeling the Generation Gap

Ahh! Am away from my blog for a month and Blogger decides to go for a "new look". Not the best thing for a tired MS blogger to see and figure out. I suppose I will get use to it but truthfully I'm getting fed up with constant change that really just seems to be for the sake of change.

Here's a new study showing that cannabis really does relieve MS symptoms. The draw back is that cannabis can   decrease cognitive  function. My answer to that , me being a legal marijuana user,  is to only use it  in the evening  or before going to bed. I find that allows the effects on cognitive function  to wear off  and   I have no problem doing my work  or other activities. Also the  Indica, type of cannabis gets you less high and works better to relieve pain and muscle spasms.

Now I'm a very light user. Legally I'm permitted  90 grams per month but I'm averaging about 15 grams, so   if I was using the full 90 grams, I would most likely be spaced out. I'm saving that for when I retire.

The problem with using marijuana is the perceptions people have. That's why I don't like to talk about it much with non users. If I forget something or feel out of it "Oh! it's because I'm a stoner". Using marijuana means I must be  a hippie, wasted, loser.

 It's especially humorous  when these comments come from people that I know who take  several prescription medications, including powerful opiates. You see that's OK because the doctor prescribed it.  And the doctor would never give you something harmful or addictive Right?

Certainly I don't think doctors are dope pushers, but they seem to be relying more and more on drugs as being the answer to all medical problems.  I never leave a doctor's office without some kind of prescription. My routine is to either throw the script in the garbage or get it filled and let the pills sit in the cupboard unused.

You might think that is reckless of me or that I'm not being a good patient; not wanting to improve my condition.

I've done my research and I know that anti depressants don't work  unless you really are clinically depressed which most people aren't.  That painkillers like Percoset and Oxycontin are highly addictive and can have serious side effects. Ditto for sleeping pills.

Injectable MS drugs supposedly  slow progression and  lessen the number of relapses I know lots of people who use them, but they don't seem to be doing any better than me. MS is so unpredictable and different in everyone; so how do they know those  drugs  do what they claim?  I mean if I were to use injectables how would I know that I'm having fewer relapses or that my symptoms are less severe? Compared to what?

Then there are the anti fatigue medications with my favourite side effect: Insomnia!!  Seems kind of pointless to me. Oh yeah and the drugs for muscle spasms that cause tremors.

Thanks I'll stick to my weed

April!!

Ahh is it really April already and have I not been blogging for so long?

My excuse this time is disenchantment with the entire internet, but most especially with social networking.

It really blew my mind when I found out  that co-workers troll the various networks like Facebook, with the express purpose of being  tattle tales.

 Imagine a person going to the big boss, to tell them how they read on a blog, (not mine) that a person on a disability pension, went on a cross border shopping trip to Buffalo.

 The disabled  individual has chronic fatigue in addition to other health problems and is obese.  I only know this because we crossed paths trying to get accommodations at work. So I guess the implication is: What is a fat, tired person, who collects a pension,  doing,  travelling all that distance to shop?

My question is:  What business is it or yours and why do you care?  And of course it's always the person who acts like they are sweetness and light who does these dirty deeds.
 
So now, until I retire I really don't feel like sharing much about my personal life, my political views, belief systems, or any other topics that busy bodies can misconstrue to do me harm. I already have enough challenges. Challenges like : the decline in my walking, ever increasing fatigue, and the sudden unexplained coughing fits that I think are due to my recent surgery. More misery to tell the doctor about next week.

Oh! just so everyone knows. I am now 100 percent legal to grow and posses my own marijuana for medical purposes. So as Lady Gratham  would say " Put that in your pipe and smoke it!!

Medical News - Not So New

Once again I have neglected my blog. At least I have an excuse. The wireless router on my computer has been acting up. Seems like I have no choice but to continue buying the latest technology, just to keep up.

Two interesting articles in the news. The first one is in regards to an MS drug that is responsible for 11 deaths due to heart failure.  I'll comment in the next paragraph. The other is about over diagnosis 


The  reasons I don't take any medications for my MS, except  medical marijuana, is due partly  to my concerns over side effects, but mainly because I don't believe they work.  

The drug mentioned in the article above is a perfect example of why.  The question I have about drugs for relapsing/ remitting MS (the type I have) is how can they say for certain any drug reduces  the number of relapses? Relapses are so random; I never know when I'll have one. Sure there are things that can bring on a relapse, such as  my recent  thyroid surgery, otherwise I can't really say for certain what brings them on nor can my doctor. So if there is no predictable way of determining how often I will have a relapse;  how  can I know for certain a drug is reducing them?

The side effects of many MS drugs can be serious, even fatal. Is it really worth the risk of heart failure for me to take a drug that possibly doesn't  truly work?


Thanks. I'll stick to my vaporizer  and suck it up. No pun intended

As for over diagnosis I am one of those people who doesn't believe that early that early diagnosis saves lives and I  believe it can actually do more harm.  There seems to be more and more research to back that up.

I never have any regular tests done, with the exception of ones for MS, and that's only because of  job.

Yep! No mammograms, colonoscopies,  pap smears, diabetes tests and so on. My blood pressure  does get a regular check, only because that seems to be the routine no matter what doctor you see.

I know  people will say that it was thanks to tests that doctors were able to diagnose my MS.  Oh and what a crazy twisted path that was for years and years. And what good did it do me?  Every six months I go to the neurologist and when I leave I still have MS, there is no cure, and not much of anything  anybody can do about it.  Am I any better off?


When I retire I will never have another MRI or any other tests and I will avoid doctors as much as possible.  Yeah that's me; wild and reckless!

The MS Card

So much I want to write about.
 When I have time, I have no energy.  When I have energy, there are so many other things that need attention. And of course when I really do need energy, MS laughs at me and  drains every drop.

The MS Card.  In some ways it is like a credit card, in the bad sense; that the MS card will always have a deficit and  it will be a temptation to use it.  What exactly do I mean by the MS card? Well I guess it is something I can use to explain why there are so many things I would like to do, but MS prevents me from doing them.

 I really hate using it, but I learned a valuable lesson that sometimes I really must.

 Example: A few weeks ago,  I was summoned to jury duty. It was clear in the summons that the trial could go on for at least three months. When I filled out the questionnaire I said that yes, I would be able to commit to that time period. Oh how stupid of me! Thank goodness the judge excused me because of my job. I guess someone involved in case had a connection to my employer.  What a mistake it would have been if I had not disclosed  my MS ( which is what I planned to do) and had been selected as a juror. Yeah I suppose I could have  begged off at a later date, however that would have required a medical certificate  and a whole lot of bother for everyone.

At the end of  my one day at court, I was  exhausted from doing not much of anything.  I came home and   tried  to revive myself:  tea, a shower, food,  a glass of wine, music. Nothing worked! Even trying a nap was painful!

 I was  miserable  sitting on the sofa and mad at myself that I was so foolish to think I could have taken on such a responsibility, yet at the same time feeling like a total loser that I couldn't.

So next time, even though it sucks to use the MS card,  I will have no choice.  I have to stop thinking that I'm still the old me that can do everything and accept that  the new me can't  do much of anything. At least not most of the time, or not when MS decides I can't.

It really sucks though , really really sucks!!

Hello 2012 - Good Riddance 2011

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

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

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

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

http://www.thesantaclausparade.ca/

Dr Fraser Mustard

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

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

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

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

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

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

High Profile

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

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

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.