Prednisone

So many things I want to write about only as usual, I'm too tired. What a wasted evening. I did buy a cd today by IL Divo, which I might pop into the cd player and listen to it in bed tonight. That should help to chase away these blues. Yeah I know I should be downloading this stuff on to the mp3 on my phone, but I'm old school and still enjoy listening to the radio and cd's.

Spoke with the doctor this afternoon about all the tripping I've been doing lately. One thing about him is he's very quick to call back when I leave a message, unlike all the service technicians I've had to deal with these past few weeks. After talking for awhile he said he would call in a prescription to the pharmacy for Prednisone, an anti inflammatory drug I took years ago for asthma. Not too thrilled about taking it as it can cause weight gain and insomnia, two things I'm already struggling with. It sure would be great to have some drugs that didn't cause side effects .
My son was nice and went to the laundromat today to do a couple of loads . That should last us till Monday, when the service guy says he will show up . Not holding my breathe for this wahser nonsense to be resolved.
A guy at work was commenting on how technology is the road to ruin Have to agree. It's handy and yet a pain in the ***( insert where you want the pain) .
Must be the weather getting to me. Every year I find winter less appealing and get fed up with it earlier.

3 Forward 2 Back

Had my visit with the doctor this morning. Things are stable right now, although he did say a couple of times that I was an anomaly and something about my leaky blood brain barrier. My EVP tests are slightly below normal, there is protein in my spinal fluid, no change in my MRI, and I have the same proteins in my blood. He said that he didn't think I needed any heavy drugs like interferons. I told him that honestly I wouldn't be interested in doing that anyway and he seemed relieved . I don't know maybe some patients insist on it.
The strategy for now will be to monitor things , treat individual symptoms, and see how it goes.
He also said he would send another letter to my employer about allowing me to tele work, due to my continuing problem with fatigue.

I left feeling not too bad and walked the 15 minutes back to work taking a short cut through the mall, to get out of the cold and wind. Decided to treat myself to a new sweater that was 50 % off. The stores already have pretty deep discounts on things . The mall was busy but I notice people are shopping mostly in the cheaper stores. The dollar store was doing booming business.


Then I get into the office just in time to hear the latest news. The government is proposing to freeze our wages, roll back our current increases, and take away our right to strike.

I made a joke that it was just like working at Wal Mart.

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.

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.

Amantadine

Starting my drugs tomorrow morning. Amantadine. Funny thing is I already have a bottle of these pills. The last doctor I had prescribed them. I didn't trust him which made me suspicious of anything he recommended. How can you trust a doctor who makes you sit around waiting for an hour and then when you finally do see him he barely has five minutes to spend with you ? And of those five minuted is busy shuffling through your file because he can't remember you.

My new doctor spends lots of time talking to me and even phones ! OK doc I trust you so I'll try this stuff. The side effects are mild at least, except I'm not thrilled about possible insomnia or constipation. I already have enough trouble sleeping.

Yes, if I could have one wish it would be to sleep through the night. I'm not greedy, six hours would do me fine.

Question: How many new blogs are started every day ? 7,000, 30,000 120,00 ?
Answer tomorrow.

The Doctor Calls

My neurologist called today. The good news is, no new lesions according to the latest MRI.
The bad news is, I have to have the EVP tests done again as the old ones are defiantly lost. Don't really mind those tests, lying around have electric current run through me. I actually like it on my feet. It's like a super massage. I'm just annoyed that it's duplication caused by ineptitude.

After telling the doctor how much time I've taken off work ,he convinced me to at least try a medication for the fatigue. I'll be starting that on the weekend to see how it goes. I know it sounds silly, but I feel like I'm caving in. When I commented that a drug will just mask the symptoms, he said sometimes masking is good. Regardless, I can't go on this way and am at least willing to give it a try. Then like a silly ass, I started crying telling him about other symptoms that I don't really want to mention here. He was very re assuring and I did feel better afterwards.

If anybody out there takes drugs for fatigue I would welcome your comments.

Other health news: Hamilton General Hospital has received a federal grant for a heart research centre. Read about it here. Seems our sort of Prime Minsiter, smells an election coming and is handing out candy. Ha! trying to make out like he cares about healthcare. If he and his conservative buddies had their way the whole system would be privatized. It's only because most Canadians flip out when you even suggest taking away their universal health care system that he stays quiet now on that issue . The only reason he's still in power(minority gov.) is the other parties are so pathetic right now. I vote Green. I figure they can't do worse than the rest so why not give them a try.

I got 6/8 on the health quiz this week. Wow ! 50% of pregnancies are unwanted. I thought it was much less.

Proteus

Proteus, an amphibian who lives in the waters of caves in Slovenia . To me it looks like a plant when it sends out a new shoot. Thanks to Roman for sending me that postcard.

I may as well be a Proteus with all the rain we're getting. At least I timed my errands right this evening and got back home ten minutes before another storm. Ha! for once I didn't get soaked.
I'm a real space cadet every time I go out now. Forgot to mail my postcards tonight and Saturday instead of my shopping list I brought along a list of tips for my Sims game (the juices for those of you who know the game) Naturally I forgot half the stuff I wanted to buy.

Read an article in the health news about a drug company that wants to promote a drug used to treat glaucoma as an eye lash grower. Apparently one of the side effects of Bimatoprost, is long thick lashes.
"We are pleased with the results of our clinical program and believe this innovative program, if approved, could meet a significant and unmet demand in the medical aesthetic marketplace," Scott Whitcup, Allergan's executive vice-president of research and development, said in the release.
Yeah I just bet you are. What you really mean is you will create demand for a drug for something people don't really need.

That's it for now. Didn't accomplish much today ,which causes twinges of guilt.

Tomorrow I'm hoping to find local strawberries at the Farmer's Market.

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.

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.

I'm not a Bloody Fool !

Last night I posted a link to Images of MS, a photo project about different people who have MS.
It seems that my fellow bloggers feel the need to educate me about the links this site has to a certain drug company.
Hey! I'm not a Bloody Fool ! I'm well aware of the drug sponsorship.

When I was first diagnosed with MS I didn't know a thing about it. So what did I do? I turned to the internet to find out all I could . First stop The MS Society of Canada, who's website is sponsored by Biogen Idec, makers of Avonex , as is the MS Alliance. Next I tried MS Watch, proudly connected with Teva, makers of Betaseron. In the meantime my mother bought me Montel Williams book " Climbing Higher", him turning out to be one of the biggest drug pushers. Oh ! and the MSAA, are also pretty good at spreading the drug message.

Site after site with very little info about alternatives Like maybe a massage might be better than more, stronger, pain killers?
Next I went on some forums,asked for advice and what did I get ? People telling me about this drug and that drug. I decided to stay away from the forums after a person recommended Symbalta, a highly addictive anti depressant, with a lovely side effect to boot. Psychotic
episodes !

Are the bloggers any different ? No I'd say the vast majority discuss all the drugs they shoot up every day even though they are vocal critics of the very companies that make said drugs.

Over and over I am told that these drugs work and yet I'm not convinced. How does anybody know that they really work ? You haven't had a relapse ? or it wasn't as bad as last time ? Can you say for certain that it was thanks to your medication ?
And what about long term effects ? I'm planning to be around for at least another 20 years or more . Am I really supposed to fill my body up everyday with medication and think it won't catch up with me ? That I won't end up like the HIV people ?

And I can get as much drugs as I want because I have a very good drug plan . My union is even saying that soon I will have a drug "credit card" Take it to the pharmacy and I only have to pay the 20% deductible. Wow ! just imagine when the doctors , the supreme drug pushers, find out about that.

I take Advil and a couple of measly sleeping pills every week .That's it. I don't take Allectec for my fatigue because that just gives me fake energy. And I don't take anti depressants because they don't work . And I don't take Amantadine for my spasms because it's an anti viral drug that is used to fight flu. So if I get the flu will that stuff work if I've been using it for years ? And is it really a good idea to mess around with your immune system ?

Answer me this ? Where exactly was I supposed to go to get info about MS without bumping into a drug company ? Isn't " Images of MS" at least trying to promote some public awareness of
MS ? Awareness that I could have used, instead of being scared out of my pants because I didn't know what the heck was the matter with me.

dizzy day

A dizzy day. I keep having this feeling that the floor is giving out underneath me. Wednesday I have an appointment with the doctor to get forms filled out for my medical accommodation .
4 pages of questions and it's going to cost me $80 ! I'll get reimbursed but I don't even care about that ,I just want it over and done.

What's driving me crazy is I never know if what I'm feeling has to do with the MS or something else. I read and article that a very small percentage of MS' ers have fits of uncontrollable laughter or can experience a state of euphoria . That doesn't sound so bad to me . I guess it would be awful if it happened at an inappropriate moment , like at a funeral. I'm not trying to be clever. It really would be awful .
Tomorrow there's going to be an article in the Toronto Star about the dangers sleeping pills and tranquilizers. Look forward to reading that ,me being such an anti drug person.