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.

Images of MS

Too tired tonight to blog. Check out Images of MS a photography exhibit of 27 people with MS.

Real energy I miss it

Stayed home today. I did too much on the weekend and now I'm paying for it. I remember when I moved into this house 6 years ago, all the work I did from morning till night. Having a house with walls covered in shiny vinyl wallpaper with orange roses on it, is a good motivator to do reno work. Still I wonder if I moved in today would I be able to do it or would I just suffer with the roses ? 3 years ago when I had the first major dizzy spells I was in the middle of doing laminate floors upstairs. Well that all came to a halt and didn't get finished for months Even now there's so much trim work to finish . I'm reluctant to do any of that because I just feel so weak . It feels like such a challenge . I miss the old energetic me.
What I find even more tiring though is socializing. That lunch on Saturday was a killer. Couldn't believe how tired I was afterwards. No wonder I make excuses to not go out . Every once in awhile though I have to say yes . I feel like I have to show people that I'm OK and they don't need to worry about me. I also worry that I enjoy being a recluse too much.
My son had a party on Saturday. For some reason a box of pills I had in the cabinet ended up in the toilet. It was a prescription for Alertec, which the doctor said would help keep me alert during the day. Then the pharmacist told me they were addictive and I had to talk to the doctor if I wanted to stop taking them. After doing a little research I decided I didn't need fake energy.

So the toilet is an appropriate place for those pills even though they cost me $70.
Now I'm going to see if there's a good Kung Fu movie on tonight on Martial Arts Mondays.
I can watch somebody else jump around because I sure don't feel like it.

MS Global Dinner Party

Saturday was the MS Global dinner party . I didn't have a dinner I went out for lunch instead with a couple of friends . I got annoyed when one of them mention a person she knows with MS who is so amazing and brave and looks fantastic etc. etc. Hmm guess I'm not .
Checked all the blogs didn't see any mention of the dinner which surprises me. The MS society has a story about people who had dinners to raise awareness and money for MS. Read about it here.

PC beats Doctors

Read about it here .
I'm not sure if this method would work for MS. Not that I know that much about Parkinson's but I think it has a definite set of symptoms and illness progression. MS is "quirky".

Maybe this is why? More about it here
A computer has no emotion ( not yet at least) and no bias, so I can see that it would make a diagnosis based purely on the facts. Doctors are human and therefore subject to emotions .
Many , not all , doctors are egoists . I have had doctors tell me everything that was wrong with me was all due to stress or menopause symptoms . I think they get frustrated if they can't figure you out right away. In the beginning they look for the same things : high blood pressure, stroke , diabetes, menopause , thyroid , inner ear problems, infections, STD's . If you don't have any of those , well then you become a challenge and some doctors don't like a challenge so they pass you on to another doctor . Then the whole cycle begins again. I also think there are still too many doctors out there who don't know anything about MS . To them you become the mystery patient or possibly the hypochondriac ?

Suicide

NO ! I'm not going to kill myself, even though I think about it often. Usually when I'm very tired and take one of my naps. That's the reason I avoid naps because I know sure enough my thoughts will drift to suicide. And how many times have I been half awake in bed, my worries magnified a thousand times in my mind.
The same pointless thoughts: "I have no future" " I'm useless" " I'm going to lose my independence"" I'm going to be a crazy old lady, living in a cardboard box on the street" and so on. All of it nonsense .

During the day I'm making all sorts of plans, so obviously I don't really believe I have no future .
Lose my independence ? Yeah that could happen, but then I'm not very good at asking for help, so maybe that's something I need to learn how to do. Useless? Hmm have to think about that more Do we really need to be useful to matter ?

If I do end up in a box on the street, I hope I'm in Florida, where it's warm. If there's a hurricane, I can always get another box .

I can truthfully say that I will not suicide.

Why?
First because I believe it's a sin . I don't mean that I think that people who have done it go to hell. I leave those decisions to God. I guess part of it is residual brainwashing from my Catholic up bringing ( I no longer practice) . I think suicide is taboo in all religions. Life is precious, a mystery, perhaps one that we will never figure out , and aren't meant to.

Second. I have seen the impact suicide has on those who are left behind. Entire families ripped apart. You think your life doesn't matter? Watch that movie "It's a Wonderful Life".

I have a friend who tells me that if you kill yourself, you have to come back and live your life over again, exactly the same . I'm way too tired to do that . So I have no choice other than to stick around and see what happens .

So how did I cure myself this week of lowly depressed thoughts ?

I went out and bought myself a great big , whacking, HD television. Not that I can afford it, but when has that ever stopped me . I plan to buy all the movies I love and sit around watching them.
Just have to make sure I don't take any naps.

Suicide facts

Help if you need it

DoYou Tell?

Found this article in the New York Times.

Do you tell your employer about MS ? If Yes when? What was the reaction?
Have you faced discrimination because of MS ?

I told my employer . Ever since, I have been the ping pong ball nobody wants .Well, they still want me but they want , the old me.

Once again I ask. Is it realistic for employers , for anyone, to think we can go a long in a straight line for 30, 40, 50 years and never , ever, break down ? Never have problems ?

Another off day

Yesterday I had to miss work. In the morning I lost control of my body functions, which I won't go into details . How am I supposed to get ready for the day when I'm like that. How can I walk down the street and not worry that it will happen right there , or at the office? Oh yes that would be lovely. Another reason why I want to work from home. Still no word on that. My request has gone to a higher level of management for a decision. . Didn't think I was that important.

Today I was fine . I'm having a hard time getting use to my life being a question mark. A good day, a bad day, a horrible day, a rotten miserable day. Yeah but when ? Never knowing , that's what's hard to take.

Briefly watched the moon eclipse tonight. Can't remember much else, due to brain fog.

Can I help you ?

Can I help you ?
There are so many offers of help out there and yet so many are false. There are so many kinds of helpers. The helpers who have good intentions. They want to help the poor down trodden victims in the world . They do this by keeping people in a state of victimization. Remind them constantly of their poor victimized state. They like that others become dependent on them and will always need them. When they speak to you they use a soft gentle voice , baby talk.

Offers of help from those who really want you to say "No Thanks".

Or helpers who seem so sincere and then a year later throw it in your face that they helped you. Weak fool that you are.

There are the helpers who love praise and recognition for their helping. They love to get awards
"volunteer of the year". "Oh Thank you Thank you for helping me " Yeah they love that.

Then there are the helpers who do it for money and pretend that's not the reason they do it.
Oh No ! They believe in that cause that they get paid $800,000 a year to fund raise for.

And let's not forget the helpers who says after someone commits suicide " Oh if only they had come to us for help"

I know that there are some genuine helpers out there. Good people who do it because they really want to. They don't have an agenda.

I know I sound cynical .It's just that "Can I help you ?" is starting to sound like" Would you like fries with that ?"

MS Face

Recently I had my passport renewed and here's the photo I used. When I picked it up from the photo shop there was something about it I didn't like.
Taking into consideration that you can't smile and they blot off most of your make up, still something wasn't quite right. I look like I've lost my spark .
Then after reading on Anne's blog, Disabled not Dead , about the "MS face"
I new that was it . This is my MS face, just add the constant post nasal drip
from the left side of my nose and there you have it. I've had my thyroid checked and that slight bulge isn't a goiter. I think I was tensing my neck not to blink.
No wonder everybody keeps asking me how I am.

Montel speaks

Taken directly from the Montel Williams MS Foundation site:

Dear Friends,

Thank you for all the calls, emails and demonstrations of support you have sent my way since the announcement that CBS and The Montel Williams Show is coming to a parting of ways after this, our 17th season on the air.

Please know that there is nothing sinister behind this development. CBS did not decide to stop distributing the show because I have MS, nor did that corporation “cancel” the show because of any statements I may have made.

And perhaps most important of all, The Montel Williams MS Foundation is an independently run 501 (C-3) non-profit that is not subject to the scheduling decisions of CBS, a for-profit company.

So thanks again for your enthusiastic support for me and the Foundation, and I look forward to working with you to defeat multiple sclerosis.

Sincerely,

If I read between the lines, he's not happy about it.

A few cooking tips

Have to make it short tonight. I've been working on a website. Why I'm doing this when I can't even figure out how to do my blog properly, who knows.

Cooking tips: Don't bother to chop onions , garlic, parsley . The chopped frozen onions are very good as is the crushed garlic in the jar. You can buy packs of small frozen cubes of parsley too. Just pop them in what ever you're making. I can't tell any difference in the taste and I use to be a real fussy cook, always insisting on fresh Not anymore.

Frozen vegetables are as nutritious as fresh, partly due to new freezing methods and they are packed right from the field. Sure fresh is good but how far did that veg have to travel and how long has it been lying around ?

Like salad ? Buy the pre cleaned bagged lettuce . Get the kind that they make up at the store, not the national brands. That way you know it hasn't been handled too much. The bags of mini carrots are good too.

I know all this stuff costs more yet there is less waste. How many times I threw out a head of lettuce or carrots because I was too tired to prepare them and they went bad .

Buy a slow cooker. It's so easy to cook a pot roast or chicken. You don't have to do much. Just put it in the cooker , set it and a few hours later you have a nice main dish to go with the frozen veg and salad !

My mind has gone blank so I'll have to finish this tomorrow.

Wanted to talk about cooking

I did want to talk about cooking tonight How does that relate to MS ?
I've read so many blogs and forum posts by MS'ers who find cooking a challenge , mainly because they are very tired , or in pain or can't move there limbs properly . Like so many things, cooking really does become a chore. Yet these folks want to cook. They don't want to eat convenience food or junk meals and they can't afford a maid. Me either.
I guess I'm lucky that for me cooking is relaxing . When I'm in the kitchen with the radio playing I forget my cares. Kind of like when I'm writing.
I know that I feel better when I eat properly. Let's face it , fast food has too many things in it that make me feel bad.

I have a few tips that perhaps might be of help for others to make it easier to prepare food .
Since it would be too difficult and repetitive to go on every blog and forum to comment, I will write about here and then pass it on.

Now I'm so tired so it will have to wait till tomorrow .
I'll just mention one thing for now. If you can , get an automatic dishwasher. It saves so much time an effort. If you can't bend to load it or empty it, I have seen a simple cabinet design that mounts the washer on a platform. This raises it up to make it easier to use. The space above isn't wasted. A shelf above the dishwasher that matches the counter top is handy for a microwave oven . I will post a picture of it soon.

MS and my period

Today I did some research about how MS affects my menstrual cycle. Actually, it's the other way round. My period affects my symptoms. In my case it is Oh! so true.

Read about it here: MS and Menstruation.


How come the doctor and the MS society didn't tell me about this? Maybe because I'm an old lady and they think I've already gone through menopause ? No, that can't be right because they did do blood tests last year and the technician who discussed the results with me said my hormones were normal and I could still get pregnant. I broke up laughing . Pregnant at 53, can't even imagine it. And I'm still regular like a clock, no menopause for me yet.

So now I know why I feel so lousy just before my period Actually horrible is a better word .
I knew it, I knew. My period was making my MS symptoms worse. That's why my leg and neck hurt more this past week. That's why I was even more fatigued ( and that's lots) and my right eye was more blurry and I was dizzy. All that aggravates the mental stuff (memory, concentration) so no wonder I was such a space cadet at work.

Does it mean when I do finally get the big "pause" I'll feel better ?

Doesn't seem to be much discussion about it out there .
Lots of talk about sex , relationships , intimacy . Talk about all other body functions, but not much about menstruation . That surprises me since the majority who have MS are women .

Stay away from pot

Happy Valentine's Day !!! I have eaten way too much chocolate .

I was finally able to get to the Sunnybrook hospital website.
This morning on the radio there was a story about the harmful effects of Marijuana on MS'ers.
If you have any cognitive impairment, like I do , pot will only make it worse. Read about it here http://www.sunnybrook.ca/news?id=514

and here http://www.thestar.com/article/303346

and here
http://www.neurology.org/cgi/search?andorexactfulltext=and&resourcetype=1&disp_type=&sortspec=relevance&author1=&fulltext=marijuana&pubdate_year=&volume=&firstpage=

So not only does pot wreck your gums, and put you at risk for cancer, it can seriously mess up your head.

Eat chocolate instead.

I'm later than usual. So many phone calls tonight. I think the winter blahs are getting to everybody and they want to chat.
Hey I never noticed till now how to add a link right in my post. Not surprising I'm usually so tired when I do this it's all a blur and I'm not thinking straight.
I did a little more reading . Seems the trend in research for MS , is coming up with better and different, oral drugs . Drugs that are used for ALS and Parkinson's are also being looked into .
Myself I have doubts . Not sure the benefits outweigh the risks. In twenty years will it be the same situation as those who have been taking drugs for HIV ? They don't develop AIDS and yet they have so many debilitating illnesses as a result of those drugs . One man I was reading about 53 years old, who has so many serious things wrong with him from side effects, that he is in worse health than his 85 year old father. I'm not judging. Everyone must decide for themselves what is best, yet is aggressive treatment really best ?

I was frighten last night by dizzy spells . They have gone away now. Every time I get them I think of that time almost 4 years ago when the dizzy spells were so bad I couldn't get out of bed all weekend. I couldn't even turn my head or move that the room would spin around madly.
It left me feeling so weak . That whole summer all I could think of was how I wanted everyone and everything to go away so I could just lie in bed . Everything was an effort . I had to practically crawl to the doctor's office . That's when the whole crazy journey started from one doctor to another, one test to another Oh! the endless tests. And it's not over yet.

Poodwaddle

Tonight I'm too tired and dizzy to write so I did a bit of blog decorating. You can find this stuff and more at Poodwaddle and it's free. Click the title above for the link

New Report

A bitter cold -30C today. My face is red from wind burn.
Last night I read an interesting report at the MS Canada site " Cognitive Changes and MS" .
Very reassuring for me. It seems I am about as mush brained as I will ever get. So if you have worries about your cognitive functions, check it out.
I had that weird eye thing today The only way I can describe it is like I have a Christmas wreath made out of mini fireworks in my right eye. It seems to be worse when I'm really tired.
Tonight I'm making this short. I have postcard stuff to do

MS Super Cities Walk

Today my son reminded me about the MS Super Cities Walk . All over Canada cities host a walk to raise money for MS research and support services. Check out the MS Society of Canada website in my links for details.
April 13, 2008 is when we walk here in Hamilton. Last year I did the longer walk and I hope I can do it again this year. The beauty of it is I don't have to decide until I get out there. They have the course set up so that it's easy enough to stop if you feel like it or keep going . Afterwards there's a lunch provided by some local restaurants. Last year the weather was nice and we had a good time .

I found out that Aaron Solowoniuk , the drummer for " Billy Talent" has MS. He raises money for scholarships for students with MS or those who have a parent with MS. Anyone in Canada under the age of 25, attending a post secondary institution( university or college) can apply . Once again see the MS Canada website for more information.

If my blog is still going and I do the walk , I'll post some pictures here .

Too old for MS

First: I have to apologize for accidentally deleting a couple of comments on my blog. Billy and Mrymerry ,feel free to return and post another comment or two.

Second : I have decided to up my vitamin D from 400 to 800 mg. per day . We haven't had very much sunshine at all this winter and I feel depleted. I did a bit of research and you can go as high as 2,000 mg per day , a combination of diet and supplements. I even read 10,000 produces no toxicity. I'm not sure exactly how much I get through food. I have lactose intolerance , although I can still mange small amounts of yogurt , cheese, and a tiny bit of milk in my tea. Not enough dairy to be a major source of D. I eat meat and some fish which also have D in them. Ahhh, I still remember those big spoons of Cod Liver Oil my mother use to feed us . Morning sunshine she use to call it. I don't think I get any were close to 2,000 mg per day so no worries about becoming "toxic"

Somebody said I was too old to be diagnosed with MS at 53. Normally 40 is the oldest.
Well I think that's because I have had it for ages and my symptoms weren't that bad. And how many times when I went to the doctor I was told I was going through the peri- menopause
( yeah right ! for the last 20 years) so I just stopped going to the doctor.
Now I get annoyed with myself for blowing off the symptoms for so long ,yet I never thought of MS, didn't really even know what it was. When I had trembling in my fingers that was around the time Michael J Fox told about his Parkinson's and said it started that way. I thought "OK I have Parkinson's so I going to die anyway so why bother going to the doctor". Yeah very clever of me.

Anyway what with MS being such an odd condition , what I mean is unpredictable, it's not surprising that some people, like me, could go for a very long time not knowing.

It certainly explains a lot of kooky stuff that has happened to me over the years.

And I still haven't gone through menopause so I suppose I still have the peri- menopause too
Ha Ha !

That's something I would like to explore another time .

Question : Are there symptoms unique to women ? Does MS affect monthly cycles?

Things that make life easier

Well I managed to put a few links on here . I will keep adding on to the MS bloggers list . I'm not being partial , just putting them on as I find them . Lots of good ones out there.

Tonight I'm going to mention things that make life a little easier , even if you don't have MS.

About a month ago I splurged and bought a memory foam mattress. I purchased the Obus Forme, which is in the mid price range. It's so good though that if I ever replace it, I will go for the top of the line Tempur Pedic one. Since sleeping on it, I find I have much less pain in my neck and hips. ( old pre- MS pains) I don't toss and turn as much. An added bonus to that is the bed is much easier to make in the morning ! I can't say I sleep more, sleep is always a challenge. It's just very comfortable and pleasant to lie on. It is soft and yet firm.

I have also resumed getting massages. I use to always get short 15 minute ones for my neck at a place close to work. They went out of business about a year ago and I never looked for another place till now. There's a massage therapist around the corner . I'm going for the full body ones . Even though the relief is temporary at least it helps cut back on the pain killers.
I guess I shouldn't say pain killers, which suggests real heavy duty medication. I only use Advil,
although I do take lots of it. Not all the time . I can sometimes go for a week without any and then need them for a month solid.

Tomorrow I have to go to the YWCA and renew my membership for swimming. I find swimming a good exercise because I don't get overheated . The cool water feels really good, especially on my head . Besides,I find other forms of exercise are just too painful and tiring .
When I swim I can just float around if I want. Very relaxing.

Another thing I find relaxing is my postcard hobby. I do it through an online site called Postcrossing. See it in my hobby links. It's nice to get cards from around the world and helps counteract all the crummy bills I get. I have met so many nice people there on the forum. Often I don't just trade postcards but little gifts, like chocolate, fridge magnets, bookmarks etc. The beauty of it is I can do it as little or as much as I want It isn't complicated nor does it require any special knowledge or skills. A good hobby when you have MS. It really is fun .

Think I'll continue this tomorrow as I feel very wilted now.

drugs and more drugs

It's break time, so I thought I'd do an early update .
Today I'm working at home and thank goodness! Last night I came home exhausted with pain in my left leg and foot . Both my feet also had tingling, burning, and I had a couple of those strange sensations like an electric shock . After dinner I just couldn't sit at the computer for more than a few minutes . I had a bath and crashed out on the couch to watch a movie " The Kentuckian" with Burt Lancaster. I find watching movies relaxing. They take my mind off my problems.

I broke down and took a sleeping pill before bed because I knew the pains would keep me awake. The pain killers weren't working. Does it mean they are phantom pains? Amazing how sleeping pills not only help me sleep,( as long as I use them very sparingly, maximum of twice per week). They also reduce pain and anxiety. I woke up this morning and my left leg and foot felt better. I am calm and relaxed. Being home might have something to do with it as well.

So many news stories today about drugs and treatments. None of them reassuring.

First, in the New York Times, " Drug Ads Raise Questions for Heart Pioneer" . A phony ad for what I think, is a phony treatment . I think too many people are prescribed anti cholesterol medications who don't need them. And what the heck is up with TV commercials for prescription drugs? You see an ad and then go to your doctor and say Hey! doc I want some of that stuff . Or is it just a way to continue brain washing people to keep taking drugs ?

Next " Diabetes Study Partially Halted After Deaths". Turns out that 50 years of belief in a treatment for diabetes may be wrong . It reminds me of the way they use to treat stomach ulcers, which did more harm than good. Did you know that the doctor who discovered that ulcers are caused by bacteria , actually drank a cup of bacteria to give himself an ulcer. No one believed his findings before that. Now his recommended treatment is standard practice and it works.
Other stories in the New York Times:
" One in Four Doctors Prescribe Anti Depressants for Back Pain" . Seems though they don't work for that. Doctors prescribe anti depressants for all sorts of ailments besides depression.
I've had more than one doctor write one for me for all sorts of different reasons . I had the pharmacist put them on file and I never used them .

"60 different drugs fail to reduce hypertension" so they're going back to low sodium diets. Imagine 60 different ones that don't work. What a waste of time and money.

I can't list all the many articles about the cause of Heath Ledger's death. I did laugh bitterly when I read the comments of different doctors and medical experts . The ones that cracked me up most and made me so angry, are the claims that he would never have been able to get all those different drugs prescribed by the same doctor . Oh Really? I had a doctor who dished out drugs like Halloween candy, five or six at a time. Wouldn't a combination of sleeping pills, anti depressants, pain killers and muscle relaxants put me at risk of death ? Especially when the doctor says "Oh take a pill and if it doesn't work take another one" " Oh it doesn't work?"
" We 'll up the dose " " It doesn't work? "Try this".

They never say " Oh be careful taking this stuff, you are on so many different medications " " it only takes one more pill than you need to kill you" "You really shouldn't take these drugs for a long period of time because you will become addicted" " "if you try to stop taking them the withdrawal can be terrible and you may even have psychotic episodes"
Nope never had a doctor say any of that to me. Had to hear it from the pharmacist or research it myself.

I'd like to write more but my time is up for now Have to get back to work .

mystery illness

Article in the New York Times today" A Medical Mystery Unfolds in Minnesota" about a neurological disorder that employees at a pork processing plant have come down with.
The symptoms are similar to MS. All the affected workers came into contact with pig brains, which scientists think caused there immune system to overreact.

Another article in the Toronto Star, about how marijuana smokers are at high risk for gum disease .
This follows and article last week citing lung cancer risk for pot. One joint is equivalent to smoking 20 cigarettes. More reasons why I think medical marijuana isn't worth it. I know people who smoke pot for medical reasons . I don't see that it helps them, in fact I think it affects their mind in a negative way.

My income averaging leave has been approved. I can take 12 weeks off this summer and still get a pay cheque every two weeks at a reduced amount. This is my default plan if I don't get the work at home accommodation.

Very, very , tired tonight and my left leg and foot hurt. My eyes are blurry

Anyone who drops by my blog, please don't think I'm ignoring you . I'm still not good at figuring out how this blog works so I may be a little slow to reply to any comments you make. I do really appreciate your comments

mush brain

Tonight I'd like to thank Anne for dropping by my blog and also for posting a link on her site. I will do the same soon. Tonight, though I can't handle learning how to do anything. Tonight I want to pack my suitcase and run away. I want to unscrew my head from my body and leave it somewhere, anywhere, away from me. This brain of mush, that lets me down when I need to make decisions, need to think straight , need to concentrate. I use to be quick, had an IQ of 128. I was smart . Now what am I ? A mush brain.

I read an article that says the cost of MS over a person's life time, to the person, and society is $1,600,000.00 I would gladly pay the debt , if only it were that simple.
Here's 2 million, please give me my brain back.

A quiet Sunday. I managed to tick off everything on my to do list.

Before I talk about that I'd first like to say to Lisa ( Hi!) at Brass and Ivory , that I'm trying to figure out how to do links. I have a case of brain fog right now that makes it impossible for me to figure out even the simplest directions. Also I've been reading your Brass and Ivory blog and I feel like I've been hit by a baseball bat! And that's a good thing. I'll try to sort something out this week.

Now back to: To Do Lists. If you are having memory , concentration problems, or just plain feel unorganized (like me) I recommend making a list(s) . Keep a pad of paper and a pen close by and whenever you think of something , write it down . It can be anything, an idea for a story you want to write, a grocery list, or even a reminder to call a certain person. Wow! how many times I've said "I must call so and so today" and then the next thing you know it's 11:00 pm and it's too late.
Myself I try to have a daily list and I check things off as I do them. It's a nice feeling at the end of the day to see all those little checks marks. I don't get down if the list isn't completed either. Some days the fatigue causes me to shut down and I can't do anymore.



I also have a separate list for bigger long term goals. Things that need to get done around the house etc. OK I admit that list does get pushed aside fairly often.

I use to be fairly competent and quick minded. Now I need lists .

Nothing in the news about drugs or drug companies today. It's Sunday, I guess they deserve a rest.

Back to work tomorrow I hope I'm not too tired to deal with the bureaucracy . I hope there's some good news about me working at home.

Another drug company

Hmm didn't think my blog would morph into a drug company watch list.
Another article in the Star ,about a drug company under investigation for making exaggerated
claims as to the effectiveness of a drug,and once again suppressing negative clinical trials.

I guess they will do like the others, pay the big fine and carry on as usual.

So Montel Wiliams is going off the air. I read that on Brass and Ivory :Carnival of Blogggers, an excellent blog !

I'd like to write Montel a letter . I'd tell him that he is getting too cosy with big Pharma. That his intentions might be good, but you know the old saying. I'd like to ask him if he really thinks it's a good idea having a CEO of a drug PR company involved with an MS fund raiser? The Gala Honoree?. Is gambling, which causes addiction and misery, a good way to raise money for MS research ?

I can't come down on Montel too hard . I know from reading his book " Climbing Higher" that he has been through the mill because of MS. Still I wonder if all the money raised through his MS foundation will go to drug research. There is so much more that MS sufferers need besides drugs. How about some research to improve the quality of life for MS'ers ?

I know many many people will disagree with me when I say that anti depressants either have a limit effect or simply don't work. That doesn't mean I say stop taking them . A person should do what they think is right . You have to learn to live with depression and fight back.
Counseling, behaviour modification , work for me. And I know depression . I tried to commit suicide when I was 15, long before MS came into my life. Many times over the years I've thought of doing it. Not anymore . Now I see depression as a challenge. I have to fight it. Yeah depression sneaks up on me and knocks me down all the time . I keep getting back up .

socializing

Yesterday my doctor and my mother both asked me if I work at home will I miss the socializing
with others in the office. I guess they are concerned that I will become isolated. I didn't say much to them because I know they mean well. It seems everyone is so resistant to the idea of tele- work.

I've worked from home before as part of a pilot project. No I didn't feel isolated. There was nothing to stop me from picking up the phone or sending an email to connect with others. I would also arrange to do the occasional lunch date or after work shopping with someone.

Going into the office everyday I come home burnt out and that has a big impact on my social life.
I don't feel like doing anything because I'm so tired. I pass up chances to go out . Don't even feel like talking on the phone. Even writing a quick email feels like a chore .
I have given up my volunteer work which was great for socializing. Haven't been swimming in months . Don't feel like going to a movie or dinner or anything.

Today I'm home sick . I woke up feeling weak and dizzy. If I had gone into work( which no way was I up for it) I know what would have happened . I'd feel worse and be concerned about passing out . Or like last week totally lose my memory. Or the other days when I can't concentrate at all.The main culprit behind all of that is getting over tired . At work I just can't make then understand how crushing the fatigue is.
If I'm home I don't have to worry how I look. Don't have to deal with all the people and the tiresome pleasantries and the meetings and seminars etc. I can go at my own pace and I get just as much done.

My sick time is dwindling down to nothing What will I do if they don't let me work at home ?
Guess I'll have to take days off without pay which is very much disapproved of.

No really, if the work at home doesn't happen I will seriously have to consider giving up work and take a very early retirement. It will cost me but I don't care . I feel like I have no options.

Employers out there. I'm telling you with computers and the internet you can be a little more flexible with work arrangements !!!! Why are you so insistent that workers come in and sit in a little cubicle all day !!! It doesn't make them better workers.

You think you would be glad that people want to work , want to continue to contribute as long as they can .So stop being such dinosaurs !! You keep telling me to be proactive ,to think outside the box!! Maybe you should do the same.

Doctor, Family. Let me decide what I want to do with my life. You can give me advice sure,
but It's my life !! Let me decide when, how and who I wish to socialize with .

Co- workers . No, seriously. I'm not faking it . Maybe you are good at sucking it up, but I'm not.
Hey! You have 5000 hours of sick time, good for you. Try staying home next time you have a cold or flu Okay ? And I hope you never get sick. I wouldn't wish what I have on you. If you do get sick though ,I won't tell you that we all have problems and that you should stop feeling sorry for yourself. I won't tell you that maybe it's all in your head or push any of my home spun remedies on you or tell you that I know another person that has your illness and they seem to be fine. Okay? Give your coworkers a break . Quit the gossiping and stop being so judgemental .