Tuesday, September 30, 2008

Big Pharma Big Oil and Bathrooms

Not much happening today except the Amantadine is causing me bathroom angst. Having to go too often for one thing and not enough for another. How much water do I have to drink and fruit do I have to eat ? And Oh! how I hate having to use public bathrooms, but I have no choice now.
There are always annoying women doing disgusting things in public bathrooms. Don't even want to think about what their toilet at home must like.

I also have to check and see if another side effect of this drug is strange dreams. I had a real weird one last night with of all people in it, Bill Clinton ! I have to admit I did have a good time with the former president. It was very Clintonesque if you know what I mean (nudge nudge wink wink)

Read here about drug companies funding grassroots movements in Britain, that attack the National Health Service. Oil companies fund research to back Palin's campaign against protecting Polar bears .

Oh yeah and that test I have to have next week is a lumbar puncture. The doctor wants to check out my spinal fluid to see what's lurking there.I'm going along with it so that nobody( read insurance and bureaucrats) can say I didn't do everything possible to figure out this MS . Not that it will change anything, I'll still have MS.

Now I'm going to watch a tv program about the 46 million Americans who live without health care. One woman quoted as saying" they may as well take me out in the yard and shoot me. It would be cheaper" This is to remind me that no matter how fed up I get with the health care system here, it's still pretty good.

Sunday, September 28, 2008

A Hint of Colour

A beautiful warm fall day and I was feeling pretty good too. There's a slight hint of fall colours in the trees. I really think today should have been my birthday rather than yesterday when the weather was awful and I was a useless lump. At least I had well wishers to cheer me up and a yummy chocolate birthday cake. One conversation though that was not so good, but very informative, was with a guy who had an assessment with a Health Canada doctor. Oh! what a nightmare the poor guy went through to get a medical accommodation to tele work
He did give me some good advice. I feel much better prepared for my meeting on Thursday.

I have to admit that even though I think I often waste too much time on the web it can be an amazing thing . For me to be able to find out the answer to a question for a guy living in California, by asking a person in Japan, and while waiting for a reply, read a blog by a guy in Pakistan, and shop for groceries on line, is cool. Kind of makes up for all the time I waste watching Kung Fu movie clips on You tube.

Well not much else to tell. I think I'll enjoy the rest of the evening since it isn't often these days that I feel this good.

Friday, September 26, 2008

Up, Down, All Around

Like the financial markets and the weather, it's been an up and down sort of week for me. The Amantadine, I will say once again, works, yet the effect is very uneven. I can have a good morning followed by a not so great afternoon. The evenings are slightly better allowing me to stay up later. Instead of wanting desperately to go to bed by 8:00 p.m. I'm feeling that way at 10:00. I still took a sick day off work on Tuesday, and went in late on Thursday, which I'm not happy about. Not much I can do when my body simple refuses to cooperate so that even walking down the stairs is an effort. Fortunately I have some money in the bank. The unpaid leave is really starting to hit my paycheck . When I go for my health assessment next week I'm going to push hard to get tele work. I think it's the answer to allow me to keep working.

It's hard to explain to people how tiring it is to go into the office everyday. There's never a moment of peace and even breaks aren't restful. Everywhere I go there are people milling about. I try to close my eyes for a few moments and sure enough that's when somebody will pop up at my desk wanting something. I'm told I can use the "quiet room" to rest, but Oh! what a hassle that is. It's like trying to get admitted to the hospital and I really don't want a fuss around me when I'm tired and I don't really want to lie down in a dark room either.

Then there's the getting ready for work and the getting there part. Hey I'd like to go to work in my robe and slippers, with my hair in a ponytail, and no make up, only my vanity won't allow it.
I do dress much more casual these days, don't bother with accessories, don't fuss with my hair, and have toned down my shoes, which is as much as I'm willing to let go for now. I'm already having to give up so much with MS, can't I at least still have my mascara? Silly Libra vanity I know. Can't help it.

They do have a job lined up at work for me that would be ideal for tele work. I'm so superstitious even just writing about it makes me think I'm jinxing myself. That's Catholic /Italian/French Canadian , brainwashing from years go that's still in me. Yes Italians and French Canadians are a very superstitious lot. I remember when I was pregnant, my mother, who is a very intelligent lady, covered my eyes when we passed by a person in a wheelchair. She believed that if I looked at the person it would be bad luck and harm the baby. On both sides of the family they always talk about good luck, bad luck, omens, signs, curses, spirits, fate, etc. etc. I try to tell myself it's all nonsense,

Got a letter from the doctor today about more tests on October 16th, which I have no clue what that's about. Have to wait and check on Monday as the office closes early on Friday. Maybe over the weekend I'll remember exactly what the doctor wants to probe next. Once I get my assessment done I think that's going to be it for me with the tests. What the heck good do they do ?

Monday, September 22, 2008

Leaves are Falling

Here's a shot of Whithern, a 19th century home in downtown Hamilton that's now a museum. I'm hoping if I feel better tomorrow I can go out and do more photos while the trees are still green. We should get good fall colours this season as the trees are healthy from all the rain this summer. Looking forward to that.

"Leaves are falling love is calling in the fall"

That's it, summer is done and fall is here. I was grateful for it not being too hot this summer and glad I had some time off. I wanted to write more only I'm feeling like total crap tonight.

So here's my lazy blog with a very good article in the asia times about the bail out of U.S. banks.
and a Bling auction for charity.

The sun is now in my sign Libra, maybe it will renew me.

Sunday, September 21, 2008

Not Bad Day, Bad Day

Ahhh Save me from the cell phone company with there 10 page bills that you need a PHD in telecommunications to figure out. I spent another hour on the phone trying to get this one sorted. After being told about ten times that it was my long distance that was a problem turns out it isn't so. It's my day time minutes allocation! What crap nonsense. I tell you, cell phones are a racket and I will never sign up for a plan ever again . I'm giving it one more month and if it's the same mess; I don't care how much it costs to get out of the contract I'm canceling and going back to pay as you go.

Yesterday I wanted to do a drug update as it's been three weeks since I started taking Amantadine. Then my internet went funny and was never very good all day. Something outside, I don't know what, was disrupting the wireless signal . I decided to busy myself with chores and errands. The plan was that I would get all caught up and then maybe go for a swim at the Y today. Well, I got up this morning feeling like a train wreck and still feel pretty lousy now.

I don't know if I'm ever going to get the hang of this MS business. I didn't think I was pushing myself too much on Saturday, compared to what I use to accomplish (pre MS). I suppose it didn't help either that when I went out in the afternoon the weather was hot and humid and I really was over dressed for that. Last night I went to bed and my left leg was acting up again with odd pains,tingling, and some twitching, making it hard to settle down and get to sleep.
Things that I can ignore during the day are impossible at night.

As far as the drugs go I can say the Amantadine, does work to a degree . I'm a wreck today, but not a zombie brain dead wreck .

On October 2nd I have my appointment with the Health Canada doctor. Finally ! I got a letter on Friday from our medical officer at work confirming it . The only thing that bugged me was
the letter says he received more medical information that allows them to proceed with the assessment . What the heck does that mean ? If the recent tests I've had revealed anything I'm sure my doctor would have let me know, since he does do phone calls. Well I'm not going to waste anymore precious brain cells worrying about it. All I have to do now is prepare. I'm going to review my blog and write down all the symptoms I've talked about over the past few months. Hey this blog is turning out to be useful !
I'm also going to write down what I think my needs are and what the duty to accommodate should include. If I bring that information with me I won't have to worry if I'm having a bad, brain dead day . I'm also going to get in touch with a couple of people who have been through this already to get an idea of what happens at these meetings.

That's all I can do, the rest I have to leave to fate.

Yes, I'm a fatalist in the sense that I believe I do have some control over my destiny, but there are always forces outside of me that I can't control.

Friday, September 19, 2008

MS World Congress

An article in the Toronto Star, about MS caught my eye today. I was not aware of the" World Congress on Treatment and Research in Multiple Sclerosis" that is being held this week in Montreal, September 17-20.

Here's a few links to it for more information:


The Star article is about research linking vitamin D and MS.

Thursday, September 18, 2008

Quick Amantadine Update

This was the first morning that I felt the Amantadine was really working. I was much more alert
and focused. I also noticed last night that my legs and feet aren't bothering me as much which makes it easier to sleep. Still have many bathroom trips though. I'll see how things go this afternoon and evening.

Wednesday, September 17, 2008

Test Day

Beautiful weather today, mild and partly cloudy, perfect for a walk. Here's a scene from the harbour

Right now I'm watching an old Billy Joel concert from 1978. Songs from his first album "The Stranger". It's pretty good. Where is PBS digging up all these old concerts ?

Another test out of the way! I didn't even get my foot massage, as they didn't do the leg test. I got the impression the technician wasn't quite sure what she was doing, the way she fiddled around with the nobs and kept checking the computer screen. Same thing happened last time I had this test. Maybe they don't it that often ? If weren't for my employer nagging me, I doubt I would bother to go for more tests. What do they prove ? I still have MS and when they do find something wrong, it's not like they can fix it.

Because the test was shorter than planned, it gave me some time to go buy birthday gifts for my son and order a cake. Don't know why they can't do black trim icing or a skull decoration like the last cake. Have to settle for dark blue and no skull. I think the cake lady enjoyed being be the fun police. My son will be 19 and of legal drinking age. Sure hope he doesn't pick up the drinking habit, what with all the stories about binge drinking in the news. They really do like to push booze on young people. Seems like every event at the university features drinking or is sponsored by a beer company. I've never been much of a drinker. With my MS I find I can't drink at all, one glass of wine or a beer is my limit. There is much alcoholism on both sides of his family so it worries me.

Worrying, something I'm good at. My Dad says that I come by it honestly as the Lanno's
(my family name) are expert worriers and could teach a course on it.

Not much in the news except all the financial woes. I wonder how America feels now that they are officially a socialist country ?

Tuesday, September 16, 2008

Two Hours of Normal

This morning for about two hours I felt almost normal again. By that I mean the way I use to feel before MS. Not that I was skipping down the street or anything. It was good to not feel anything and by that I mean no : itching or twitching, numb forehead, brain dead, sore eye, sore leg.

Tomorrow I go for another EVP test at a different hospital. Why did my old stupid twit doctor, have to lose the last test results ! It's such a waste of everyone's time and money. Well, at least I'll get a foot massage out of it.

The Amantadine is helping me get through the day. Not a miracle drug but it does help.
One side effect is frequent bathroom trips. Haven't noticed any others.

Today I finished writing a report on my thoughts about work and medical accommodations.
A facilitator has been appointed at work to review all the duty to accommodate requests and make recommendations on how to streamline the process. I thought he might like to know about my three year wait.

Monday, September 15, 2008

Blurry Eye

Not much to say tonight. My right eye was hurting and blurry all day. It's a little better now.

I have had four different contractors, give me four different versions of what is causing the leak in my basement. There's a gap on the side of the house that will be repaired tomorrow and the pipe for the eaves troughs, will be diverted to the storm sewer, not down the drain the way it is now. Turns out my new eaves troughs are too efficient, the drain can't handle it. It didn't help that we had record rainfall this summer. I would prefer the water flow out into the back garden but that isn't feasible.
That's it for me I feel lousy tonight and can't type anymore.

Sunday, September 14, 2008

Raccoon Buffet

This morning I came downstairs, opened the door to have a look at what the weather was doing, and saw garbage everywhere. The raccoons haven't had a buffet at my house for awhile so I guess it was my turn. I put the kettle on for tea and then headed back outside with a broom. Just as I was about to unlatch the screen door I saw something flutter on top of the now dried out cone flowers. At first I thought it was a leaf , then realized it was a tiny bird. A yellow bird, with grey and black colouring on the sides. I watched it picking away at the top of the cone flower and decided not to disturb it. Went back in the kitchen to get breakfast ready, taking a peek outside every couple of minutes to see what the bird was up to . I decided to take some pictures which didn't turn out any good. Hard to get good shots through a screen door ! The bird hung around for about half an hour, then suddenly was gone. Now I could go out and clean up the mess and Oh what a smelly, disgusting, mess it was . After that was done I went down to look at the flowers. The bird had picked the tops clean. I never knew birds liked cone flowers . Even though I do like the way the dried tops look in the winter with snow on them, I don't mind them being bird food, especially for such a cute bird.

Now as for the raccoons. Live in the city next to a ravine and believe me, you won't think they're so cute.

The Amantadine seems to be working, yet I find it's very uneven. Not sure if it will balance out eventually.

Saturday, September 13, 2008

Nostalgia and the Weather.

Yesterday evening I was feeling too awful to do anything ,much less blogging. Even eating my dinner was an effort. I flopped on the couch and watched two concerts on the PBS channel which they should rename the "Boomer" channel . One concert was Queen, in Montreal 1982 and the other The Who, in Kilburn 1977. I'm not a fanatic about either band, not like some people for whom rock music is a religion. They were good concerts and helped get me through a very depressing, rainy, gloomy , night. A bit of nostalgia too, as they reminded me of an old boyfriend, and of my brother and his kooky air guitar playing friends.

I was also very sad seeing Freddie Mercury, which reminded me of my friend Craig, who also died around the same time from AIDS. It was like the title of that book by Simone Signoret "Nostalgia Isn't What It Use To Be"

I didn't mind the rain so much during the summer, it kept the temperatures down and saved having to water the garden. I'm starting to get fed up with it now though. I need to get some work done on my house and can't until things dry out. My garden is a total mess. I can't even imagine the pure hell it must be to live in an area with all the hurricanes. This week I got an email from a woman in Louisiana. She was replying to a message on a postcard I had sent her . I had written that I hoped the storms weren't causing too much problems for her and her family. Her reply was that Gustav, was a disaster for them and they have been without power for a week. Now this morning on the news I see hurricane Ike is causing havoc in Texas. I wonder if I ever had to evacuate where the heck would I go? If all the people living on the southwest shore of Lake Ontario were told to leave their homes, it would be chaos.

Feeling a little better today .Not sure what I'm going to get up to as the weather is looking like we will have more rain.

Thursday, September 11, 2008

Green Power

The Green's are in !
Bowing to public pressure, the Conservatives and New Democrats, have agreed to allow Green Party leader Elizabeth May, to take part in the debates. Read about it here and commentary here that will lead you to more election stories and information about the Green Party.
Now we might actually hear something worth listening to instead of the usual "that other guy is a bum, vote for me"
I dare to dream that we might actually have the guts to elect a Green MP.

Wednesday, September 10, 2008

Drugs, Fall , and Elections

Here's a statue in the park next to city hall commemorating Ukrainian Immigrants. I didn't bother to take a picture of city hall, because it's so damn ugly.

I try to imagine what it would be like to pack up and leave my home for another country. Where would I go ? Now a days we get many immigrants from South Asia . Last week a couple of South Asian guys starting working at my office and I'm glad. We need to spice up that stale white bread place.
And it sure was stale today. The same old tired excuses . Won't bother to say why . I'll be so glad when I can go back to not really knowing my manager and not caring. It will just be some person I have to endure at the occasional meeting and make nice with at the Christmas lunch .

It's a cool 10C tonight. The weather all week has been fall like: cold mornings , warm afternoons, and cold nights. I don't mind except it's hard to know what to wear. It feels strange to ditch the cotton summer clothes , put on a jacket, and shoes with socks. I have to admit I was getting fed up with wearing sandals .My feet really take a beating by the end of the summer.

I've decided that tomorrow I'm going to up the Amantadine dose, taking another pill at lunch in addition to the morning one. I don't really want to, yet I'm noticing that the effect wears off by midday, so I could use an extra boost. I'm still not convinced it's the right thing to do but I feel I have no choice. I can't handle being the zombie woman anymore.

I'm disappointed that the election campaigns in Canada and the U.S. are becoming all about personality attacks . I'm so sick of hearing why the other guy is bad and I shouldn't vote for him. Why should I vote for you ?
I added Zach's blog to my hobbies list. He mentioned it on a postcard from Malaysia.
Check it out and help him decide if he should take the job with the airline.

Tuesday, September 9, 2008

MS Info

Had an email today from MS Watch about an article in Reader's Digest Women's Issues and MS
I think it's a reprint, still it's worth a look.

Thanks to Anne at Disabled Not Dead I've discovered another MS blog by Linette which I'm adding to my links.
Finally a very good article in the New York Times about Life and Death read it here

Not much else to say I'm really tired and can't think straight Also have more house repair woes to look into.

Monday, September 8, 2008

Just Get On With It

No time today for photos . I was too busy being courted by management and the union today and writing up a report about my work/MS situation. Lots going on that I can't talk about except to say things are heading in a much more positive direction. Now if they would just get on with it and quit all the talking. Oh the bureacratic tribalism of the office!

The Amantadine seems to be working. I feel tired tonight but it is more of a normal, end of the work day kind of tired instead of a zombie, brain dead, tired. I even managed to get out for a walk after dinner. I also notice that it's a little easier to fall asleep as I have less of the twitches.

Tomorrow I have to get myself over to the Farmer's Market to buy what I think will be the last of the summer peaches. The apples are on sale now . I had my first Macs of the season and they taste really good.

I'm all talked out or rather typed out, thanks to all the yakking and writing at work today.

If you really want change vote Green.

Sunday, September 7, 2008


Here's as good a place as any to read about the election Oct. 14th.
I'm voting Green, read about it here

Friday, September 5, 2008

Art and Indian Food

That's it! I've decide that this weekend I'm going to write a letter for my manager, outlining all the reasons why I should be allowed to tele work. I'm taking far too much time off. Don't they want me to be productive? I've read over the work "Illness and Injury" policies, and the "Medical Accommodation" procedures. They state very clearly that the employee has a right to input as to what the accommodation should be and the employer doesn't require a diagnosis to proceed. I'm still willing to go through the Health Canada assessment, however it's taking too long . I need help now. What have I got to lose ?

Went for a walk in the rain this evening It wasn't an electric storm, just heavy drizzle.
It felt so good after a week of heat and humidity to have that cool rain splashing me. I didn't mind at all getting wet. Stopped in at the drugstore and indulged in a couple of pick me up, lipsticks. After that I came home and decided to make some filling and dough for Samosas. They're to go with Tandoori chicken and Basmati rice for tomorrow night's dinner. I'm getting the hang of this Indian cooking. It tastes pretty good.

I still think I have a Vampiric streak. I seem to recover from my "spells" as soon as the sun goes down . I sure had lots of those this week. They were a little less intense , so perhaps the Amantadine is working. I've decided to wait another week before I up the dose like I'm supposed to. Yeah bad girl, not following the doctor's instructions .
I just need a little more time to see , or rather feel, if this stuff is working or not. Once you up the drugs, it's hard to go back down.

If you like imaginative and fun street art ( and NO I don't mean graffiti) check out this blog by Slinkachu. I found out about him thanks to BBC news . Good to see some news that isn't about elections or the slumping economy, and yet isn't one of those cutesy human interest stories.
I'm going to add it to my hobbies list.

Tomorrow is the Locke Street Festival, which is no big deal. May as well go have a look see as it's right around the corner from my place. I'll bring my camera along and if I get any good shots I'll post some here.
One last thing :I made a boo boo the other day. 50,000 blogs are created every day, not every year . Sorry for any confusion .
Oh yeah ! I put A Stellar Life, back on my MS list .Seems like Diane Stafford still wants to blog.

Thursday, September 4, 2008

She Won't Go Away

I feel horrible. Thank goodness there was dinner ready tonight . I've been taking photos and will post them on the weekend because I'm way too tired to do it now. . I wish Mother Nature would give me a break !

Wednesday, September 3, 2008

Escape from Reality

Just when I think things are getting better Mother Nature comes along with a minor set back . That's all I'm going to say about it. I think the drugs are starting to kick in which helps.

I have retreated into the world of the Sims2 .
No MS there.

Tuesday, September 2, 2008

I Think it's Working

Feeling a little better today Perhaps the drugs are starting to work.
I wanted to do a post tonight about the "Visibility of Invisibility " Wrote the whole thing out during my coffee break today. Reading it tonight I realize it's a bunch of rubbish and I thought to myself "Carole you really should shut up" so I'll just say that if I had to choose, I would stick with invisibility.

Visibility would mean I'm in much worse shape than I am now. Yeah, it's for the birds when people say "you look so good" or "you don't look sick" still better than talking to me like a baby, the way they do to the guy in a wheelchair at work.

I did bad on the health quiz tonight 3/8. I always thought it was seniors who shared prescription drugs, turns out it's teenage girls !

Monday, September 1, 2008

75 Million Blogs

In answer to my question of last week.There are about 50,000 new blogs registered every year,however most are seldom, if ever, used. Of the 75 million blogs worldwide only about 10% are updated regularly, meaning at least once every 90days. Those interesting little stats come from Foreign Policy magazine of which I'm now a subscriber. Lots of stories in it that you will never see in the mainstream media.

I haven't felt like blogging at all the last few days. It's been a funny long weekend for me, up and down with bursts of energy, followed by total shutdown. Can't say the Amantadine is working yet or not. I think it will be at least a few more days before I know for certain. Hard to tell with this crazy MS thing.

I did get a free electric kettle on Saturday. A cordless stainless steel kettle, which I think the water for tea tastes so much better from compared to that awful plastic kettle I had. The plastic kettle matched the decor in the kitchen, which is a really dumb reason to poison myself with plastic infused water.
The reason it was free is without me knowing, I had amassed $150 worth of grocery points at my local supermarket . I get my groceries delivered from another store and usually only stop in the local one when I run out of something. Amazing that over 6 years of buying bits I acquired so many points. At first I thought it was a con to try and lure me back as a regular customer, but no, the customer service lady said I really did have the points and I could use them to buy anything in the store. Still suspicious, I decided on the kettle figuring I could just dump it at the cash if buying it turned out to be a hassle, then on a whim picked up some serving spoons and a couple of tins of chillies. End result:It was an easy transaction and I only had to pay the tax. Any wonder I'm so tired, the way I over think things?

Tomorrow it will be one year I have worked at the local office. I transferred from Toronto wanting to be closer to home. Toronto use to be home, only it's too expensive for a single parent to own a house there. I remember last year at this time wondering how it would all turn out. Much worse than I imagined. Maybe by next year things will be better.

Now the last long weekend of summer is over . Not a bad summer aside from the fatigue (which is dreadful) my MS symptoms much less than the past three summers.

Here's a good article in the Independent, about life lessons learned through a brain lesion.