Tuesday, June 28, 2011

Cuppa' Joe?


I recently came upon a little tidbit of information that linked caffeine to the prevention of MS so, I decided to look into it...

The effects of caffeine on MS have only been studied using mice so far.  Researchers gave our rodent friends the equivalent of 6-8 cups of coffee per day and found that this prevented them from developing the animal-model version of MS.  Poor things; I can only imagine their little running-wheels going 24/7 during the study!

Anyway, I'm going to hit you with a bit of science here to explain why caffeine has been shown to ward off MS. 

There are four building-block molecules that make up our DNA, one of which is called adenosine.  Adenosine normally latches on, or binds to the adenosine-receptors of our cells.  After this happens, T-cells/immune cells are activated and cross through the blood-brain barrier into our central nervous systems (brain & spinal cord).  The T-cells then begin wreacking havoc and causing lesions & inflammation, otherwise known as Multiple Sclerosis.  Simple right?!  ha ha

Well, caffeine apparently works to stop this process in it's tracks.  Those sneaky little caffeine molecules bind to the adenosine-receptors first, preventing anyone else from getting in there.  This stops the whole chain reaction and prevents T-cells from travelling into the central nervous system in the first place.

This sounds great...for mice.  This whole study needs to be conducted on humans to determine if caffeine will prevent T-cells from getting into our central nervous systems too.  If so, the hope is to develop a drug that will degrade adenosine or prevent it from being formed altogether, thus preventing the T-cells from being activated at all.

There is a problem with this 'easy-fix' approach though...I mean, it is MS, did you expect it to be easy?!

Turns out that there are adenosine receptors throughout our entire bodies.  So, a drug would have to be created that targeted the adenosine in our central nervous systems only.  Enormous undertaking to say the least.

If you're not into lining up in the Starbuck's queue 8 times per day, I suggest you wait for further research.  If you're up for it, I'd be happy to research human-sized running wheels for you.  Let me know...

Friday, June 24, 2011

Let's Get Outta' Here


There comes a time after every devastating diagnosis, traumatic event and heartache when you simply need to escape.  It's been just over three months since I found out that I have MS and, you know what, it's time for a vacation.

I'm off home to visit family and friends in Niagara, Ontario and then my Mom and I and two of our friends are off for a girl's trip to Quebec.  We're stopping in Montreal for shopping, the Eastern Townships to pamper ourselves and then to Quebec City to take in the sights and street cafes.  I can't wait to lounge at an outdoor bistro with a cappucino in hand and bone-up on my French.
Montreal

Eastern Townships

Quebec City
Not like we need an excuse to go on vacation but, here are the proven benefits of just taking a break from the daily grind once in a while:
  • Relieve stress
    The very first benefit of leaving everything behind and relieving your brain of all your worries is reduced stress.  Several studies have shown a direct link between stress and health conditions such as headaches, cardiovascular diseases, cancer and other types of infections acquired as a result of a weaker immune system. It has also been scientifically established that taking vacations reduces the incidence of burnout.  Relief from stress often gives us a new perspective on life, allows us to regain energy and often to find simple and sometimes obvious solutions to problems that had previously seemed impossible to solve.
  • Improve your mental skills
    Some studies have found a positive relationship between vacations and intellectual function. A well-rested mind that is free of worry is often more effective.
  • Improve your physical health
    Besides getting you away from daily stressors, a vacation often gives you the opportunity to catch up on sleep and exercise, two simple remedies for many aches and pains.
  • Strengthen family ties
    Too often, in our fast-paced daily routine, family relationships suffer. A vacation is a great opportunity to discover each other in a different setting and to build lasting memories.
I plan on doing all of the above over the next 12 days.  I'm also going to work really hard at strenthening the "family ties" between me, my favourite red wine and a lovely Quebec specialty cheese at the local Fromagerie!

I'll still be blogging while away so, I'll let you all know what treasures I find!

Love Ali



Tuesday, June 21, 2011

Special Mention Goes To...

Andrew C!!!

Andrew is participating in a half-marathon with the 2011 Scotiabank Group Charity Challenge.  The Scotiabank Vancouver Half Marathon & 5k is taking place on June 26, 2011 at 7:00 AM and is being held to support the Multiple Sclerosis Society of Canada - BC & Yukon. 

Andrew says:
Thank you in advance for all of your support!! I have chosen MS as it affects and demobilizes hundreds of thousands of Canadians each year. Personally, it hits home as my grandfather died with MS and two of my aunts are currently living with this disease. There is great hope as there are treatments currently being tested at the University of British Columbia's hospital that can help restore nervous system functioning and halt further degeneration. We are close to making significant gains on fighting MS, please support! Thank you again for any donation and I wanted to confirm that 100% of your tax-deductable donation is going to this charity!

If you are interested in donating to support Andrew, please see the link below and THANK YOU for any help that you can offer!

http://my.e2rm.com/personalPage.aspx?registrationID=1112927

Ali xoxo

Monday, June 20, 2011

Puff Puff Pass

"It's absurd.  I can go get morphine pumped into my system and nobody's got a problem, but all of a sudden they're really worried if I smoked a joint...I'll be smoking weed until the day I die." Montel Williams

Montel Williams is an American talk show host and author who also happens to have MS.  Since his diagnosis, he has become an outspoken marijuana advocate for treatment of the disease and relief from symptoms.

I have never been a major pot-smoker.  I was a sporadic social smoker in my teen years and early twenties; it was fun at parties when I had nothing to do later that day.  I barely ever smoke it these days and haven't given pot a moment of serious thought...until now.  

In Canada, there are two categories of patients that have access to legal marijuana and cannabis products.  Category 1 is for end-of-life care and uses the drug to relieve pain, unwanted weight loss, nausea and seizures prior to expected death.  

Category 2 is for patients who have debilitating symptoms of a medical condition; this is where we MSers fit in.  Don't get too excited all of you party-animals out there; you must have your physicians approval prior to going through a government application process and even then, approval may take up to five weeks. So, this is definitely not the route to go to score some legal bud prior to that weekend get together. 

The effects of cannabis products have been studied in large medical trials and the results are promising. Once thought to just improve mood and 'good feelings' (Captain Obvious says: "duh"), cannabis has now been statistically proven to help loosen stiff and spastic muscles.  Cannabis is also shown to reduce pain caused by MS (Ex. girdle band pain etc.) and helps with mobility in a major way.

The most exciting findings to come out of the studies to date are from the animal models.  In looking at long-term benefit from cannabis use, animal studies have shown that nerve cell death is slowed and the substance may actually prevent against further cell damage.  Now, this is amazing.  Can you imagine if pot could help slow down the damaging effects of our disease?!  Holy cr*p, like, hand me some rollies already!

In the largest studies of cannabis' effect on MS, researchers have used THC (D9-tetrahydrocannabinol) as an oral treatment (swallowed, not inhaled) and cannabis plant extract.  Now, I will admit, I tried the THC pill a few weeks ago; THC is the primary, active ingredient in cannabis.  

I wanted to see if it helped with any of my symptoms.  I can report to all of you out there that...I don't remember.  I simply recall it taking a super-long time to kick in (hours) and then, whammy, happy times.  Seriously, not a care in the world.  I guess that, for me, the THC pills worked to alleviate the stress and worry that have plagued me since my diagnosis.  This is good.  Could I have worked, written, carried on a normal conversation while using them?  No. Definitely no. 

There is always good, old-fashioned smoking marijuana instead.  This is Montel's method and the results are faster, less mind-bending and go away faster.  This seems to be the preferred method for getting your dose in the MS community. Multiple Sclerosis symptoms wax and wane in most cases throughout the day. The smoking-method gives you more immediate control over your treatment.

Of course, it's not all sunshine and rainbows.  It seems that the way you take your cannabis really does matter.  In people who simply smoke pot, long-term effects (12+ months) have shown deterioration in mental acuity and speed of thought processing.  There is also the cancer-issue; burning and sucking in this substance has been shown to increase cancer risk.

So, as is the way with all things MS, it's complicated.  As I've said before, if it makes you feel better and helps you with your disease, do what you need.  Just take care if you don't have a legal prescription; I'm sure shuffling along in leg cuffs is difficult enough even without a disease that screws up your walking.

Sunday, June 19, 2011

Special Mention Goes To...

Dads!!!

Happy Father's Day.  To all of the dads out there living with MS or helping to support their afflicted kids, thank you so much and have a wonderful day!

Ali xoxo

Saturday, June 18, 2011

Picking Up The Pieces

So, following the (stupid, unbelievable, ridiculous...) riot in Vancouver, local citizens have come out in the thousands to clean up our fair city.  I'm just guessing that 100% of the people contributing their efforts to clean up are not actually the people responsible for trying to destroy it.

There is an enormous sense of disgust and disbelief around town.  Just last year we were all riding high on the wonderful atmosphere of the Olympics; celebrating with guests from all over the world.  The feeling was so amazing, like a huge, global community all celebrating their own athletes and all supportive of each other's homelands.

This was the EXACT opposite.

So, to everyone inadvertently involved who came from far and wide to watch the game and experience Vancouver; we're sorry this happened and deeply embarrassed.  Congratulations to Boston on winning the Stanley Cup; you deserve it.

Okay readers...I can't believe I feel the need to discuss this on a MS blog but, back to normal next week.  Thanks for checking in, love Ali xoxo

UPDATE:  OMG, I just read the FUNNIEST article, opinion-piece on the Vancouver riot.  See link...you'll laugh, I swear...  http://www.dlisted.com/2011/06/16/this-is-why-we-cant-have-nice-things
The Vancouver we love - and the only one we want...

Wednesday, June 15, 2011

Shame On You!

In case you haven't heard, the Vancouver Canucks lost in Game 7 tonight to Boston and lost the chance to bring the Stanley Cup home.  Yes, we're talking about a hockey game here.  A hockey game.

I reiterate that fact because, there is a riot going on right now on the streets of Vancouver.  No, I'm totally not kidding right now.  I wish I was.

This is absolutely ridiculous.  There is talk that the group causing problems is the same group that began trouble in Toronto during the G-8 summit last year.  They wear black masks, rile up the crowd and start smashing things.

But...this is a freaking hockey game people!  Give me a break; this is Vancouver. The most calm, chilled-out city I've ever been in where people feel comfortable wearing sandals to church, where people were high-fiving each other on the street this morning in anticipation of the game tonight.

Now we've got the mayor coming out to speak and try to calm down all of these total psychos.  Really Vancouver, shame.  I'm embarrassed to live here right now.  Grow up.  It's f*cking hockey!

Tuesday, June 14, 2011

Nice Chompers




I have a dentist appointment tonight and it brought back a strange memory.  I recently heard about a woman who had near-perfect dental health and, once she was diagnosed with MS, had four cavities within a few months.

Is this a symptom of MS?  Was it due to stress, added nighttime grinding and perhaps a lack of upkeep with her toothy routine because she had bigger problems to deal with?  I am really interested in this so...I'm going to do some research...back in a bit....................................

Ahhhh well, crap.  Looks like MS and tooth decay MAY go hand in hand folks.  As with everything else I've found out about this stupid disease, there is no real answer and the subject is complicated.  I know you didn't really expect anything else right? 

Apparently the major issues are decreased saliva production from MS medications (Ex. Copaxone), loss of fine motor skills used to thoroughly clean the mouth and a higher acidic content in the bodies (and saliva) of MS patients. 

Tooth injury is also a major concern because, as you know, most of us have problems with abnormal gait & balance and have a tendency to fall.  Sometimes you just don't have enough warning or coordination and instead of breaking your fall with your hands, you're breaking it with your pearly whites and freshly-applied lip gloss.  Trust; I know what I'm talking about here.

Anyway, I also looked up tips on combatting tooth issues and, they're pretty much what you've been hearing since the time of your first Batman or Little Mermaid toothbrush.

* Brush at least twice a day with a flouride toothpaste
* Floss daily
* Brush your tongue and use a tongue scraper
* Avoid sugary treats and eat a balanced diet
* Use an antibacterial mouthwash (I personally love Crest Pro-Health)
* Visit your dentist for regular (twice a year) check ups and cleanings

Also, if you have problems with hand control, invest in a flosser: a plastic wishbone-looking device that you thread your floss through.  Then it's way easier to floss...

I have never had problems with my teeth and was blessed with straight, strong chompers.  I admit that, since my diagnosis a few months ago, I haven't been as diligent with my dental routine as usual.  (I know, I know Mom - I'm working on it)  I guess I'll have to break out my night guard (for grinding my teeth) because, lord knows, I've been doing a lot of stress-related grinding lately.

So, now you know.

MS has taken several things from me over the past 6 years and especially the last 6 months.  I have been fighting to get them back tooth and nail but, I now realize, I'm not willing to give up any teeth, or nails, at all.  Screw you MS...you took my high heels but, you're not getting my smile!

Anyone else have dental-related information or advice?


Saturday, June 11, 2011

Keep On Keeping On

Emotionally, I have been feeling pretty bad for about four days now.  It's been three months since my MS diagnosis and I think it's just really sinking in that this sucker is not going to go away.  It lives with me now and shares my body and there's not much I can do about that.  It's pretty difficult.

Anyway, I've been trying to get through this patch of...um, despair, hopelessness, fear...there isn't really a right word for any of it... I realized that this is SO particularly difficult because the person I was closest to and talked to about everything was my grandmother.  And she passed away in November.

I have been trying to keep her positive thoughts and words in my head at my darkest times and today, I woke up with a memory.  She always talked about this song.  She didn't know the artist and she didn't have any details about it except the name and that she loved the lyrics.

The song is You'll Never Walk Alone.  It was created by Rogers & Hammerstein II for the musical Carousel in 1945 but has been reproduced by several artists since then, including Elvis.  I looked up the lyrics though and, I can see why she found it so uplifting.

I listened to this song today and it made me feel better, more hopeful.  I'm including the lyrics here for anyone else out there who is going through the same thing as me or something just as difficult.  I hope it helps you too.

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk alone

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk

You'll never walk
You'll never walk alone.



Thursday, June 09, 2011

That Stings


Several years ago, before MS was even a part of my vocabulary, I saw a news clip about an experimental bee sting therapy for the disease.  For some reason, I have always remembered that; I guess because it seemed so odd to me.

I am allergic to honey bee stings (the type of bee primarily used in this treatment) so, there is absolutely no way that I can try this out and let you know the results.  If any readers out there have information or experience on the subject, please share.  I am so curious!

I did some research on bee sting therapy though so, I'll share what I learned in case you're interested (and NOT allergic) - or squeamish!  

The technical term for this treatment is Bee Venom Therapy (BVT) and it falls under the umbrella of apitherapy.  Apitherapy also includes the use of bee products like pollen, propolis (a waxy substance), royal jelly and honey to treat autoimmune disorders and other ailments.  Currently, BVT and apitherapy are used mainly in the treatment of MS, lupus, rheumatoid arthritis, depression, menstrual cramps, varicose veins and dermatitis. 

In the majority of cases, a bee is held with tweezers next to the skin and allowed to sting.  The stinger is left in the skin for up to fifteen minutes with between twenty to forty stings administered per session.  Most patients have two to three sessions per week and report that MS symptom relief will be noticed after six months or more.  Some patients choose to have the bee venom injected under their skin using a syringe instead.

So, yikes.  That is A LOT of stings...and dead bees.  Well, actually, only the female bees die; their stingers are connected to their abdomens.  The male bees will go on to sting another day.  Lucky buzzers.

You're probably asking:  why bee venom?  What's so special about this treatment that patients will subject themselves to thousands of stings?  Well, I'll tell you right now...

The main, active component in bee venom is an anti-inflammatory substance called mellitin.  When I had a relapse a couple of months ago, my neurologist had me do a three-day IV treatment of Prednisone, a powerful corticosteroid.  This was used to reduce inflammation in my brain and spinal cord and to reduce the severity and duration of my MS relapse.  Mellitin from bee venom is rumored to be 100 times more effective as an anti-inflammatory agent.

Bee venom is said to activate our adrenal glands, which, in turn, stimulates a natural healing response.  It is also said to work because the bee sting itself causes inflammation at the puncture site, prompting the body to mount an anti-inflammatory defense. Presumably, this then works to reduce inflammation in areas where myelin is being attacked and voila, reduction of MS symptoms.

Bee venom also contains a substance called adolapin, which is known for its painkilling properties.  Together, all of these things are rumored to improve mobility, vision, feelings of numbness and are said to promote a sense of well-being and increase energy levels.

Sounds good right?  Well, before you run out to find the nearest hive, lets look at the medical research.  Studies using both mice and human subjects (relapsing-remitting MS patients) have not only shown no benefit, some studies report worsening of symptoms.

But...despite the lack of medical support, thousands of MS patients worldwide swear by their bees.  In the United States alone, it is estimated that 10 000 or more patients are actively using BVT as their main MS treatment.

So, whether this is scientifically proven to be beneficial or not, it's happening...and it's working for people.  Maybe it's all mental, maybe it's unexplainable so far, maybe it's undiscovered as of yet. 

I don't think it really matters as long as it's helping you.  When you have an incurable disease, you use what makes you feel better. 

Next time your gut tells you to run away from that little bee, perhaps stick around, offer him your arm instead and let him work his magic !



Wednesday, June 08, 2011

Can You Hear Us In Beantown?

Dear Canucks,



Signed,

Vancouver.
-------------------------------------------------------
UPDATE:  I guess they didn't hear us...   :(

Tuesday, June 07, 2011

Well, I Never!

So, a couple of Christmases ago, my mother, sister and I went to the symphony.  We got a few drinks and sat in the lobby, relaxing while waiting to take our seats.  A woman walked by and the three of us just zeroed in on her adorable shoes.  They were shiny black satin heels, about 5 inches, with an ankle strap ribbon that tied in a bow.  Oh my, we were entranced.  The woman noticed us all staring at her lower half and stopped walking, looking at us with a quizzical face.

I looked up and apologized.  "We're just staring at your shoes; they're beautiful!"  I said.  She nodded, laughed and said "I know, this is their first night out." 
See, fellow shoe-lover.

Since my feet are all numb and my balance is zilch, I have been unable to wear heels so, I'm into flats now and, funnily enough, hats.  Well, never did I think that I'd be into another "accessory" of sorts too - some things you just can't predict.

This week I was in the lobby washroom at work and while washing my hands, I noticed that a woman down the way had a cane.  Not just any cane; my cane!  I struggled with myself; should I say anything?  Is it kosher to compliment and discuss walking aids like women do clothes and shoes?  What is the etiquette here?

Anyway, I just said to her, "I have that cane too; how do you like yours?"  She looked surprised at first but, then she smiled and said "I wish I didn't have this thing but, I was glad to see that they're made in different colours and patterns!"  My thoughts exactly.  We had a short, friendly discussion and now I know, a cane can be an accessory too.  Therefore, using female-math, it's okay to discuss in detail.  ha ha

So, I was born a blonde.  I swore up and down that I would NEVER dye my hair another colour.  Well, scratch that because a few years ago, I got bored and wanted to see what it would look like brunette.  My father has really dark hair and light eyes with super-light skin like me so, I thought I'd look okay.  I took the plunge and had it dyed dark; I really liked it and swore I would NEVER go back to blonde.

I stayed brunette for over two years.  I got bored again.  I had it dyed back to blonde and there it stays.  I recently found myself saying to a friend "I will NEVER dye it dark again!".  Hmmm, I stopped and realized, I have learned a lesson.

Never say NEVER.

I thought I'd be wearing heels until my dying day.  I thought I wouldn't need a cane.  I thought I'd always be blonde.  I try not to say "never" any more because, as we MS people know, you just NEVER know.  When you say "never", it's kind of like saying "can't".  And we all know, when push comes to shove, there aren't many things we can't handle. 

Sunday, June 05, 2011

Dream a Little (Crazy) Dream

A few posts ago I was b*tching about how the Low Dose Naltrexone (LDN) that I take for MS has stolen away my precious, crazy dreams.  ha ha  Well, last night I had my first abnormal and totally weird dream in months.  Perhaps the "realistic (AKA: boring) dreams" side-effect is loosening it's grip?!



So, I'm on a family vacation for someone's wedding.  I'm sitting on a beach on the ocean in Honduras and I'm lounging right beside a resort bar where my family is dining.  All of a sudden, this multi-coloured, cartoon-looking frog hops up and hangs out beside me.  He has the number 15 in marker written on his back.

My aunt notices him and gives me her camera to take a picture.  But, when I try to unzip the camera case, I find that it's layers and layers of different camera cases, like a Russian nesting doll.  The frog hops away and my aunt gets upset with me.

So, I get up and go into the ocean and while underwater, I see a lime-green fish lurking there in a cave.  He is enormous with an evil face and is made up of all of these leaf-like scales that fan in and out.

Then, it dawns on me why I'm actually in Honduras.  I'm a detective and I'm there to solve the missing person case of a tourist.  Suddenly (I'm still under water), a man swims in front of the fish and it grabs him, sucks him into his mouth in one gulp and he's gone.  Eaten by this evil fish.

I realize what's happened to the missing tourist, mystery solved.  Dream over. Me, happy that I FINALLY have an entry for my dream journal after months of stagnant, life-like dreams.

According to the drug information and patient testimonials for LDN, the abnormal dream side-effects typically go away after one to three months.  I'm right on target there at about two months.  But, in my case, I welcome back with open arms my NORMAL abnormal dreams and kiss goodbye those boring realistic ones where I'm cutting vegetables for hours or tying shoes etc.

And MS gets a tiny bit easier to handle day by day...

Ali.

Friday, June 03, 2011

What A Relief ?

We started talking about CCSVI and Libertation treatment for M.S. last week and I gave a brief overview of what it is and how the surgery is performed. 

I just received a related comment and Deanna says:

Hey Ali,
I just found out my veins need a plumber. So I'm trying to get the funds together to go to a specialist in California.
I've tried stem cell treatment in Israel in 2009 and that worked amazingly (I didn't need my cane for about 7 months and I no longer needed to get 'stoned' to relieve my excruciating pain!)
But I've slipped drastically since then and I'm desperate for any help!
Since I have PPMS, there's no med out there for me.
Why doesn't the medical system say 'gee this method isn't yet approved as a MS treatment BUT your veins shouldn't be clogged in any event'?
So hopefully in a couple months I'll be on my way!
I am scared yet excited and ANGRY to think that my life may have been unnecessarily full of torture.
What are your thoughts on this procedure?
Take care,
Deanna


Let me begin by saying that you're a very brave woman and I applaud your efforts to manage your M.S. by any means.  I am 100% on-board the "if it's broken, fix it!" band wagon with you.  Even if CCSVI testing and Liberation surgery is not approved for use specifically as an M.S. treatment, if your veins are f*ucked up, they should be fixed.  Is this not why we, as Canadians, pay huge taxes towards health care?

This story will probably make you angry.  My Grandmother had a heart attack back in the day and was in ICU at the hospital.  It was discovered that her veins (jugular et al.) were not draining properly and they did a Venoplasty for her immediately.  Just like that, totally covered by health care.  Exactly the procedure being performed out-of-country for tens of thousands of dollars and all being paid for out of pocket by desperate M.S. patients like you and me.

I have no answers, just conspiracy theories.  I do however, have hope.  Call me naive but, I still think that basic decency and honesty will always prevail.  After posting on this site about Merck and how they are paying off neurologists to prescribe Rebif even though it may not be their best option, I was FURIOUS.  Not to mention extremely sick to my stomach and jaded.  But, I can't help it; I think bad karma on that big of a scale is going to come around in a major way and bite every single one of them involved.

It also made me realize that sometimes you just need to get on with it, take the bull by the horns and do your own thing.  I've heard this and that from doctors, radiologists, counsellors etc. regarding Liberation surgery but, you know what, it's our decision to make.  Even if the results help you for a short time, it's a bit of much-needed relief.  Even if the surgery gives you no relief, at least you tried everything you could.

So Deanna, that's what I think.  I want Liberation surgery too and once I get the $13 500 saved up, there is not a person in the world that can stop me. 

If it makes you feel a bit better, the M.S. community is not taking the situation lying down.  My friend's father was interviewed by the Globe & Mail recently based on letters that he wrote to the M.S. Society of Canada.  He asks why the Liberation procedure has not been made available in Canada; the country with the largest M.S. population in the world.  See below for the article:

http://www.theglobeandmail.com/life/health/new-health/health-news/multiple-sclerosis-patients-navigate-the-minefield-of-for-profit-care/article2015967/

I know that it's so incredibly frustrating to have that 'possible cure/relief' carrot dangled in front of your nose.  I can only hope that, while I'm saving my pennies for Liberation, Canada steps up and decides to treat its suffering citizens at home where we belong.

Deanna, please keep me posted on your progress and I wish you all the luck in the world!  Ali

 

Wednesday, June 01, 2011

Smokin'!

I have this song stuck in my head: 
"It's gettin' hot in here; so take off all your clothes".  Do you know the one I'm talking about?  Or, "The roof, the roof, the roof is on fire.  We don't need no water...".  Well, you likely know the rest.

So, basically...I'm hot!  I blow dry my hair...my forhead sweats.  I go to the tropical bird conservatory...I turn as red as a beet.  I sit in the hot tub...my legs turn to jelly and I see white spots.  I looked it up and apparently, this is what's going on:

"As people with MS, we have lesions on our nerves where demyelination has taken place. This slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demylinated regions. Even a very slight increase of as little as one-quarter to one-half a degree in the body’s core temperature is enough to cause symptoms of heat intolerance."

Blah, blah, blah.  My hair is getting flat!

Now, I'm going to embarrass my Mom but, this is the best reference I can think of.  When I was living at home in Ontario, I would sometimes wake up in the dead of night FREEZING cold.  I'd get up, look outside and see falling snow through the built-up ice on the outside of the window.  I'd feel the heat vent and, all seemed fine but, why were my teeth chattering?! 

I'd make my way out into the hallway, tiptoe quietly along and from under my mother's bedroom door...a cold draft.  Hmmmm?  I'd open the door slowly and.........whoosh!  An Arctic freaking cold front would hit me in the face from her wide-open window.  I'd look over to Mom laying spread out on top of the duvet with the icy wind ruffling her hair, dead asleep and a big smile on her face.

What the hell you ask?  And my answer to you is:  Menopause.

Yes, that's right.  I have feared The Change ever since those freezing cold nights back in Niagara.  Well, I fear it no longer because I'm already experiencing the make-up-sliding-off, burning-bra feeling, sweat mustache effects of it now!  What the heck is a girl to do?  How do you beat the heat?

Well, from the Menopause Files I bring you the following suggestions.  A couple of years ago I bought my Mom a Chillow for xmas and I'm thinking I should be getting one too.  See here if you want one: http://www.chillowstore.com/om/  FYI, they also make them for dogs because apparently pups get really hot too.

Swimming is always a good idea; it is recommended that you wear a hat if you're swimming outside (good excuse to go shopping for cute head wear!).  There are even outdoor air conditioners.  Seriously.  They`re called Misting Fans; check it out... http://www.cool-off.com/.  So, we're not alone by a long shot and there are several options out there to keep the heat at bay and still enjoy the summer.

Hey, if all else fails, I can look at it like a test-run for later on and start compiling the above items.  And to  the M.S. guys out there, you can be more sympathetic to your wives while gaining insight into those dreaded hot flashes.  If anyone is wondering what to get me for my birthday this year, I would like to request one of those little mini fans and perhaps a new blender.  I figure cold Margaritas will work just as well as anything else and if I drink enough, I won`t care how flat my hair is.

UPDATE:  My Aunt Peggy just sent me this information on cooling neck ties (made in Canada) - thanks Peggy xoxoxo   http://www.practicaldesign.ca/ties.php