Monday, March 31, 2008

Good Boss Bad Boss

Quick post tonight as I forgot it's Monday Martial Arts, movie night .
If you ever have a really nice boss at work stay away from him/her , because you will get spoiled
and won't be able to cope when you get an idiot boss. That is my situation right now,and I'm really
at the end of my rope. Not only are they dragging their feet with my medical accommodation, now this jerk wants to take away the few things I had, such as my one day a week working at home.
He says he wants to wait for an official decision.
It's not like I'm a slacker either. I always make sure I meet my budget demands and am always on time.
I had nine good years with a boss who was a genuine human being . I cried at his retirement party because I knew there would never be another like him. Boy! was I right . I forgot what a bunch of creeps these guys can be.
Have two more MS blogs in my links which I have to take time to read another night . Fingolimod and Me and White Lightning Axion Redux, who's author referred me to them. Thanks !
Well tonight I'm the zombie woman , so tired. I can't think straight to say anything intelligent, so it's time to quit.

Sunday, March 30, 2008

Another Week End

Another week end over, not a bad one. Wasted a few hours playing The Sims 2, as an escape from worry. I'm having work related anxiety attacks . I just wish it was over, one way or another. The truth is, it's going to continue to be a soap opera for awhile and there's nothing I can do about it. To have bureaucrats in charge of my life is very unnerving.

At least I'm getting support from family and friends. It's a big help . I had one friend jokingly say to keep my flak jacket on till mid April . He's into astrology and really believes that the spring equinox makes people act crazy. Who knows , there are a lot of strange things going on, so it might be true. I had to talk my mother out of turning me into a crusade. Once she gets going , look out! She'll be knocking on the Prime Minister's door if I let her.

Not much in the way of MS. My body is very calm, except for the odd spasm and no heavy duty fatigue . If it was like this all the time it would be fine,I could handle it.
Have to get a few pledges together for the MS walk, which is happening in a couple of weeks. Hope the weather is good as I'm looking forward to it.

Friday, March 28, 2008


I'm home today. The stress and fatigue of yesterday has left me drained. I don't think it's fair that I feel like I have a hangover, when I don't even drink.

Did a bit of research about Fingolimod, a potential oral MS treatment. I found out about it from a couple of bloggers, who are part of the clinical trials for the drug. Very brave of them I think, to take part. So far the results seem promising, although there's always the nagging side effect of
elevated blood enzymes,which can result in liver damage. Let's hope that's minimal . An oral drug treatment would be a blessing. I don't think anybody enjoys injecting themselves with drugs.

Today I received a postcard from Brazil, of Ogum , God of War, Iron, and tamed Fire, in the Candombile religion. It's an ancient cult related to Voodoo and Santeria, brought to the new world by African slaves in 1549.
I was happy to get this card because I learned something new. I also have an interest in cults that incorporate their own rituals with those of the Catholic faith . It was a clever way for them to survive: convert in public , practice their traditions in private.

Anyway, Ogum has given me some energy on a slow day. It doesn't hurt to have an extra deity on my side either.

Once again I recommend postcard exchanges as a hobby. It's easy, and you get all kinds of surprises in the mail. I get lots of goodies besides postcards, such as: souvenirs, bookmarks, and candy ! Check out the link to Postcrossing at the top of the page .

Thursday, March 27, 2008

Spring Fever ?

There must be something in the air. Many strange happenings today, including a young couple beating each other up at the mall !

Amazing how things can change in one day. I had an awful day at work with a flip- flopping boss, and indecisive manager. All I can say is these guys are jerks ! Can't wait to get this stupid medical assessment done .

Interesting discussion today about MS and the dating scene. Seems a guy in the office met a woman with MS,who uses a scooter to get around. He admitted to being wary at first, however, he likes her, and is going to date her. Some thought it good, others not. Have to admit it must be difficult to decide to date someone who has MS. I can understand having reservations, as the future is so uncertain. At least the guy I'm dating wasn't put off by my diagnosis. It was hard for him to deal with at first, but he is very positive and encouraging. Perhaps it is easier to deal with if you already have a stable relationship, although I do know of couples who have split because of one partner getting sick . I know it is making me hesitate to get more deeply involved (get married) . It has more to do with losing my independence and becoming a burden. How much can you ask of another person ? and is it fair ?

Came across another good MS blog: Mandatory Rest Period. The author Kim dropped by to comment here . Check my MS links for it . Lots of good information and insights.

I do enjoy blogging after a rotten day . Very therapeutic.

Wednesday, March 26, 2008

Today I still have one blog locked. It will be another couple of days before it's resolved. Not much
happened at my meeting at work on Monday. I have to start all over again . At least this time things will get done properly as I will go for an assessment at Health Canada. It's going to take awhile but I think things will work out in the end. The union rep thinks they will offer me 50% of my work time at home ,which means 2 days one week, 3 the next. I sure hope so because it's getting to be almost impossible to work a full week anymore. I just get too tired and as a result, my evenings are wasted trying to recover for the next work day. There has to be more to life than that.

Today was an awful day. I was so sick with sinus problems and a bad headache, something that is rare for me. I tried aspirin and it worked. I feel much better tonight . Some Earl Grey tea was a big help too.
I've been reading lots of blogs . I've added a link to Tokyo Girl Down Under, an insightful and funny blog. It makes me laugh anyway.

Monday, March 24, 2008

Locked blogs

For some reason two new blogs I started have been locked due to spamming. I won't be posting anything until it's resolved

Sunday, March 23, 2008

Je ne regrette rien

Tonight a very nice end to the Easter holiday . Went to see the movie " La Vie en Rose" about
Edith Piaf. The ending was very dramatic . Here is Piaf, with severe arthritis , chronic pain from a car accident, a drug and alcohol addict . She shuffles on stage for her very last performance .
You wonder what this frail little sickly lady is going to sing and then suddenly she belts out
" Je ne regrette rien ", I have no regrets. Very powerful, very moving .
If I could be half of what that woman was, I would really be something.

So hears to you Edith , God bless you on this Easter Sunday . Merci

Saturday, March 22, 2008

Started another blog !

Not much to say tonight I've started a new blog about movies. I thought it would be fun to dabble in a topic about one of my favourite past times: watching movies and do some brief reviews. . If I keep going with it I'll post a link here .

On the MS front: I did some research on the neurologist I'll be seeing in June. From want I've found out so far, he seems like a good doctor and a decent guy. Really knows his MS stuff and is open to alternative therapies. I'm actually looking forward to meeting him.

Other than that I'm feeling pretty good. At least I was tired for a good reason today . I managed to go shopping for fabric, a task I've put off for so long. The ride on the bus wasn't so great . Almost had me wanting a car, although I can't imagine myself ever driving again . With this fatigue I would be too worried about getting into an accident.

Two more lovely days off and the weather has been good . lots of sunshine which always makes me feel better.

Friday, March 21, 2008

Better this evening

Tonight I'm feeling a little better. I managed to get out for a walk , did a bit of laundry, some chatting with friends and watched a couple of movies.
Thank goodness there were decent leftovers for dinner.

I don't like to post depressing comments , however I think it's necessary to keep track of what I'm feeling and also when it happens. Maybe that way I can figure it all out and come up with a plan of how to deal with these super down times.

I think part of what I'm feeling is guilt . I feel like I waste so much time because I'm tired. I use to be so busy all the time. It's not that I've lost interest in things or people, I'm just too tired to deal with much. I'm also frustrated because this tiredness doesn't mean I'll get a good night's sleep Not like before when after physical or mental exertion , I could go to bed and just crash out.
Now something either keeps me awake(tingling toes , twitchy hands) or wakes me up ( weird head twitch) and then the worries take over. Why is it at night my worries multiply and seem a thousand times worse ? I get up in the morning and wonder what the heck was I thinking.

Then there's the curse of the sleeping pill dilemma. Oh if only I could take them every night , get knocked out, and wake up feeling good and pain free. But I can't give in, otherwise I will be a sleeping pill junkie , needing more and more . So I stick to one a week , sleeping pill Friday.

At least tomorrow I won't be up at 5:00 am wondering what the meaning of life is .

Thanks to those who had encouraging words today . It does help . I haven't given up . Some days just suck !

Early morning blogging

I'm up so early today . I went to bed last night without having a shower first .I was too tired to get washed . So there I was lying in bed, not sleeping and worrying about a thousand stupid pointless things. Got up crying and I'm still crying. I don't have any choice but to go on . It's not knowing how I'm going to do it that is wearing me out . Honestly I don't know what to do . I'm so tired and fed up

Thursday, March 20, 2008

Good Web Videos on MS

This morning I watched a very good series of Web Videos about MS. They are presented by the MS Society of Canada,Quebec. You can access them through MS University Canada

This website, as well as the videos, are sponsored by Teva Neuro Science, but don't let this put you off. The doctor's they interview aren't drug pushers, in fact they are somewhat conservative in their views on treatment . Very positive though . Topics are presented in 5-6 minute clips. Good tips on how to prepare for your visit to the neurologist . You need high speed internet to view them. So check it out

Wednesday, March 19, 2008

Another meeting to look forward to

Tonight I feel recovered after two lousy days . I hate when my evenings are wasted because I'm just too tired to do anything. I'm the zombie woman . At least I did make a very good Mexican dinner tonight, experimenting with a tomatillo and green chile sauce.

I'm off work now till next Tuesday. That's when I have the "big" meeting with management.
The union rep seems to think they will offer a compromise . A partial work at home arrangement with 2-3 days per week at home . I would be happy with that. Having a definite schedule would be a relief and I'd be able to plan my activities around it. Rest on the evenings after a "go to work day "and do personal stuff on evenings of a "work at home day ".
I was sad to hear the rep tell me her son in law was recently diagnosed with MS and that I have a co-worker with MS who is partially blind. An illness I never knew a thing about is all around me.
The rep surprised me when she said her son in law was able to get an appointment at the MS clinic right away. My neurologist made it seem like he was doing me a big favour , having me wait only six months instead of a year to get one . What a crazy system. Regardless, I still think the health care system is better here than in the US.

So politicians ! hands off my universal health care !

If you're too tired to read here's a blog with nice photos to look at
Here's a cool one if you feel like being creative without too much effort sleeve face

Monday, March 17, 2008

Ides of March

Well it is the Ides of March so no surprise that strange things are happening. Today I was told prior to my meeting with management I would need to fill out some forms for my "disability" claim . I have made no such claim . I'm not disabled. I just want an accommodation to work from home.
Now I'm wondering what the heck is going on .

Have to say I feel much better than I did last year at this time
My face had a twitch, my hands too. I had pains all over and blurry eyes and Oh ! the fatigue . I remember hiding in my home office because I didn't want anybody to see me crying . I felt so out of control .
The fatigue is still with me , that never goes away . I just need to be careful with that and avoid doing stupid things.
The Vernal equinox this week. That usually brings more craziness. I can't wait for the Easter break.

Saturday, March 15, 2008

MS Six Word Memoirs

Bossy immune system, takes over brain

Brain is clogged , need to blog

Try to type, mix up letters

Try to think, mix up words

Try to remember, forget it all

Another ride on the dizzy carousel

Brain gives free electric shock therapy

new hobby; trying to avoid doctors

I just said no to drugs

"you look so good", heard often

Feel like crap, a frequent thought

Phantom pain, much like regular pain

Not enough sun, too much heat

False friends flee MS felled female

Blurry vision , a new wrinkle therapy

another new hobby, not doing much

Immune system needs a long vacation

Friday, March 14, 2008

My MS Theories

This morning I received an email regarding a comment posted on another blog.
Back and forth I went from one blog to another trying to figure what was going on. Why do people get into fights over the causes and treatments of MS ? Heck, the scientists don't even know what's what, so how can you put down another person's beliefs ? How can you say your method of coping is better ? That your theories are correct and others are wrong ?

So many possible causes: genetics, toxins, herpes, vitamin deficiency, infections, childhood illness, unnecessary surgery, lack of sunshine, cleanliness , and so on and so on.
So many ways to treat MS: modifying drug therapies, diet, purging toxins, antibiotics, alternative medicine , drugs for individual symptoms, etc. etc.
Theories abound.

Here's my theory of what causes MS:
I don't believe that it is so complex, just because it presents differently for every person.
I think a lack of sunshine and a lack of vitamin D while in the womb , and during childhood , are the main culprits.
Yes I do think it's that simple.
I can cite many facts as to why I think this only I'm way too tired to do it.
I think prevention will be the cure. Just as women are told to take certain vitamins to prevent Spina Bifida in their unborn child, so too will they be told to do the same to prevent MS.

Here's my treatment theory:
There's no proof that any MS drug treatments really work.
I have no control over the progression of my MS
I can and must modify my lifestyle to accommodate MS.
I must keep myself healthy in every other way to make it easier to cope with MS
I must find ways besides drugs, to ease my symptoms
I must rest !
I must find alternative interests to ones I can no longer do

These are my theories. What are yours ?
And please don't come on here to debate why you think mine are wrong. I'm way too tired and brain dead to get into a debate about it.

What ever you think is fine with me and you don't have to offer any proof either.

Too tired for Montel

Last night I had intended to watch the simulcast of the Montel Williams fund raiser.
Truth is , sitting in front of my computer for a couple of hours ,to see a bunch of celebrities congratulate themselves on how wonderful they are, wasn't very appealing. And do I really want to watch Susan Lucci play poker ? Or see Montel praise big Pharma ? Nah !
So I fell asleep watching a movie " Too Late for Tears" Yes I suppose, but a good cry every once in awhile feels good.
I did read a very good blog though by a fellow Canadian Great Mastications
Check it out if you're interested in good recipes. I think the writer, Orla, is on to something with her diet. It certainly can't hurt to try one of her yummy dishes.

Wednesday, March 12, 2008

Six Word Memoir

Today was a rotten day. I thought being open and honest about my MS was the right thing to do. Seems I was wrong. People can be so cruel and rotten. I won't even bother to go into details of the petty , small minded, nonsense .
And yet what else could I do?
It's impossible to hide it. And shouldn't other know ? What if something happens to me ?
Won't it make it easier for the next person who comes along with MS?
Hmmm, I guess trying to be sensible and practical is wrong.

Sure there are some nice caring people in the world, but there are lots of stinkers too.
Yeah you're young , healthy, and on the way up. Good for you. Hope nothing ever goes wrong in your life.

This Saturday the Toronto Star will post results of the "Six Word Memoir" That's were you describe your life in six words. Think I might try an MS version of it. I just won't talk about it at work

Tuesday, March 11, 2008


Not much happening today . I was reading about an MS diet in the New York Times.
The usual, low fat , omega 3 stuff. I suppose it can't hurt. Only problem with diets, sticking to one long term is almost impossible for me . There's just too much temptation around. I have a reasonable diet, no junk food , limited amount of packaged food. My only down fall is my love of sweets. Nothing like some chocolate and a cup of tea to give me a lift. Yeah I know my teeth would be better and I'd be less likely to become diabetic, but for now I can't give the sweet stuff up.

What I found amusing is the medical people challenging the diet . They talk about placebo effect, no proof it works etc. etc. All the same arguements I could use against their drug regimens, which they describe as the best modern medicine can offer. Maybe so , maybe not. For now I'm sticking with my chocolate. How can I pass up all those Easter treats ?

Monday, March 10, 2008

How much is 5 months of life worth ?

I'm posting early today because I have no idea what shape I'll be in after the dentist.

No point in even commenting on this past weekend except to say it was the lost weekend.
Didn't get much done due to mind numbing fatigue. I came home Thursday evening , didn't go out again till Sunday afternoon, and I had to force myself to do that. It was awful. We had a huge snow storm Friday and Saturday. When I went out Sunday the snow was piled up everywhere .I don't have a car so the neighbours shoveled lots of snow on to the road in front of my house. I don't mind at all. I don't think people know what to do with the stuff anymore.

It was almost impossible to walk . I felt like I was climbing Everest. At least I made it to the store and did a bit of shopping. Bought way too many Easter treats. By the time I returned home I was wiped out, a zombie . I made some tea and ate much of the Easter treats. So much for my diet.

I read an article today about a drug called Avastin. It's been approved for breast cancer treatment. It can extend a person's life ( I say person because men can get breast cancer too)5-6 months. It can have very serious side effects.
I wonder if if I was dying would I take the chance and use this drug ? Even if it meant possible serious side effects, including death ! or milder ones,diarrhea , infections . Do I care more about the quality of my life or just life ? I don't know . I would say right now that quality is more important and better to face death and make plans while I can. Maybe I would have a different perspective if I was dying.
Right now I have to face the dentist which is enough to deal with. Coward that I am.

Saturday, March 8, 2008

Shredding Cheese

Yesterday evening I was making dinner and decided to shred some cheese even though I had a bag of pre- shredded,I thought it would be nice to try something different . Well I can't believe how weak I've become. It was a real effort to hold on to the shredder, and the cheese, and hardly anything was happening . By the time I was done I was exhausted, and my arms and neck were killing me.

Five years ago I was a real DIY person, installing laminate floors and ceiling fans( those babies are heavy) .I built a veranda and now I can't even tackle a little pile of cheese.

I nearly fell down the basement stairs too. When I get that awful fatigue that leaves me brain dead, I do stupid things. I injure myself, I trip , don't pay attention to where I'm going or what I'm doing. I try to remind myself to be careful, to take it easy. That's not easy . I'm not use to taking it easy.

So no more cheese shredding for me at least . I'm sticking to the bagged stuff , which is equally good.

I need to put all my convenient but good food items tips in one post and then keep adding to it, rather than have them all over the place.

It's snowing again !! Guess I won't be going too far today.

Friday, March 7, 2008

An Interesting Project

My post wouldn't post and now I'm way too tired to start over.Never fails when I forget to save, something goes wrong.
Lisa at Brass and Ivory ,has an interesting project going on. Check out the March 7th post
"MS Awareness, Blogging Friends ,and a Little Link of Love "

As a result I have read way too many blogs today. Lots of variety , something out there for everyone.

Sea Slugs

First it was Worms, now Sea Slugs might help repair the brain and help fight Malaria.

Good to know that there are scientists turning to nature for answers instead of just making drugs.

And speaking of drugs... Once again another drug company, this time Glaxo Smith Kline, under investigation over it's best selling anti depressant Seroxat.

The usual story. Withholding reports of negative effects such as: suicidal thoughts, highly addictive, and serious withdrawal symptoms.
Anti depressants don't work. They mess up your mind and poison your body.

Wednesday, March 5, 2008

Placebo and the Power of the Mind

OK. My excuse for posting links instead of writing my own stuff is that my tooth is still bad.

An interesting subject the placebo effect , and the power of our mind.

My son tipped me to this article in The Independent, about the placebo effect .

Antidepressants : Spot the Difference

Makes me wonder if my distrust of doctors and drugs is holding me back .

"Bizarrely, passivity is the key to a strong placebo response. Put yourself in the hand of a powerful individual and trust them to do you good. Small wonder that witch doctors have wielded such therapeutic power. "The less involved you are in actively thinking your way through a process, the more likely they are to have a good response," says Dr Kradin. "If one gets very active in controlling the disease, in my experience, it can have negative effects. It's exactly what healing used to be like in the past. The faith that people had in their physician was a critical part of their healing."

Here's the book . (Not cheap)

Another very good, although I found it a bit nerdy; article on the same subject .
How sad that doctors have never exploited the power of faith.

The Placebo effect

And the more it costs the more you believe in it . When I was at the pharmacy getting antibiotics, the woman ahead of me was very upset.The pharmacist said she had to get the generic brand of the drug she needed because her drug plan wouldn't cover it otherwise. She insisted that only the name brand one worked and left in a huff.
I have to admit I always buy Advil , even though I know the store brand Ibuprofen, is the same.

Now if I could just find a doctor I really, truly, trust. Maybe this guy I will see in June will be the one.

Tuesday, March 4, 2008

Would you like worms with that ?

An article in the Washington Post today "Immune Systems Increasingly on Attack".

A big increase in Asthma , Allergies, Lupus and MS . Because we are too clean ?
The article also claims that doctors in Argentina, have had success treating MS with parasitic worms. Seems we need these little critters to stop our immune system from turning on us. I'd be willing to give it a try.

Monday, March 3, 2008

Tooth saga continues

Well the dentist gave me a prescription for antibiotics and told me to come back next week. Have to get the tooth yanked. It's not so bad since I've been accepted at the university to get dental implants . The graduate students assist the professor to learn how to do it. It costs about a third of what I would normally pay which I could never afford. One thing where I work, we don't have a very good dental plan.

The pharmacist looked at me in disbelief when I said I hadn't taken any antibiotics for years . I know they are a another medication that is heavily abused. Now so many germs are becoming resistant to them. So far I've only had two pills and it's working great. Just shows that moderation is best, especially true with drugs !
A very good website to help if you want to get off any drug safely is The Road Back. They have free information on how to get off Benzodiazepines, anti depressants, anti psychotics, etc. and how to deal with withdrawal without taking other drugs ( yes the doctor will prescribe another addictive drug to help you cope with withdrawal) . I don't think most people are aware how easy it is to become addicted to these drugs or how serious the withdrawal can be.

I've added another link, Tim Matheson's Productivity Blog. He has lots of useful tips ranging from how to squeeze a lemon, to avoiding online data theft. Hey! after all, I can't always find MS stuff.

When this tooth starts behaving I'll write about last year's "Ides of March" and my twitching face .

Sunday, March 2, 2008

It isn't always MS

Tooth woes have kept me away . I tried ignoring it, but there's no escaping the dentist tomorrow. I hate going to the dentist a hundred times more than the doctor. It's always painful and expensive.
This sore tooth had me thinking about how MS doesn't make me immune from other conditions
(I don't use the term illness) . For example I have read about people who have had to deal with cancer and MS. I don't know how they do it.
So I'm grateful for my low blood pressure, healthy heart, and lungs , and hope that besides my bad teeth I only have MS to worry about.
I've added a link to the Washington Post as they have some good health articles.