Great Balls of Fire!

Holy hell, my eyeballs HURT!

I noticed this weird symptom about a year before I was actually diagnosed and, of course, thought it was something else.  Like fatigue, eye-strain, migraine etc.  You know the drill; every other conceivable thing but MS.

Anyway, it comes and goes but, when it's bad it feels like there's a little guy sitting on top of my eye balls and just squeezing them for dear life.  As you can imagine, this is not a pleasant sensation.  Can any of you MSers relate?  Do you have a little guy in your eye too?

I did some research on this symptom when it came back for me recently and discovered that it falls under the Optic Neuritis umbrella.  Remember our old friend...?

http://soiguessihavemsnow.blogspot.com/2011/05/eye-spy.html

It seems that MS hosts a whole collection of other fun visual sh*t like:  double vision, blindness, jerky eye movements, lack of coordination between the eyes, and abnormal pupil response.  I had all of these symptoms at once when I fell skiing on moguls and cracked myself in the head about a decade back.  I never thought I could feel that disoriented again until...dum, dum, dum...MS.

Oh well, what are you going to do right?  I've said it before and I'll remind you again:  if you see any of your MS friends or family dressed in some atrocious get-up, they have blue eyeshadow (a la 80's) smeared on or they're wearing two different coloured shoes, it's just not our fault.  We can't see what the heck we're doing sometimes - just have a chuckle at our expense and keep walking. 



The Offspring

So, I've never really wanted kids of my own.  I was the babysitter-extraordinaire when I was a teen and I love being around the young'ins but, have never wanted to be called "mom".  I know I'm in the minority of women in my age group in this regard but, I just wasn't born with that mommy-longing.

Lately a lot of my friends have been having babies or talking about having them. My friend Amber and her husband just had their first little one - and he is SO cute! Sometimes when I hang out with my friends' kids, my biological clock ticks for a while after but, logic always stomps in and squashes that pretty quick! ha ha

I started thinking about how difficult it must be for parents with MS but, just how much joy and hope those little tots must give you when you're having a desperate sort of a day or a relapse.  I get so much energy and delight from just being around kids so, today I wanted to celebrate the little guys.

Thanks for just being you little cuties - you brighten up a world that can sometimes be a major downer!  :)

Hannah & Monica

Gram with great-granddaughter Madeleine

Isabella

India Rose

Madeleine

Hannah

Carter

Amy with her girls, Isabella & Adriana

Grace

Isidro with his granddaughter, Adriana

"A rose can say 'I love you', orchids can enthrall, but a weed bouquet in a chubby fist, yes, that says it all."

If any readers out there have special little tykes that you'd like to honour, send me their pic and I'll post it for you.  Ali.

UPDATE:  Oh, we have another addition to the kiddie-roster... Here is the absolutely adorable little daughter of my friend Steve and his wife Jan - Ella!  What a cutie :)

Ella

Lovesick

I pulled into my parking garage after work, checked the mail, caught the elevator, entered my condo, grabbed the recycling and headed back downstairs.  While in the elevator, I glanced down and noticed the top two items in my recycling bin...an empty pizza box and...a bag of cat food.

I thought to myself:  "Sh*t Alison, you need to get a boyfriend."


This immediately filled me with dread and made me want to crawl up into a ball and hide. How, just how, do you tell a new love interest that you have MS?!

I've heard fairy tales and horror stories alike on this subject.  Some people have found the love of their life who says "MS doesn't matter"... and then there was the woman who told me that, on her second date with a new guy, she decided to tell him about her MS diagnosis.  And, he was SO angry that she hadn't IMMEDIATELY told him that he walked out on her in the restaurant,  stuck her with the bill and never spoke to her again.

Harsh.

Earlier this year, I was casually seeing a guy and when I told him about my MS diagnosis, he ran away faster than an old horse with a glue truck behind him.  I'm scared to try again because that experience made me pretty bitter about the whole human race for a while.

Anyway, as usual, I decided to do some research and found an article about this very subject.  I'll spare you the article; just the same old stuff from someone who doesn't actually have MS.  But, I did want to include some of the reader comments from real people with this disease:

"I'd say tell him right off the bat. If it's a problem for him, then you're lucky you told him when you did. If he can't deal with MS, imagine how he/she would deal with even bigger issues?" 

Paul S.

"I met someone online, well....I didn't actually ever meet him. The night before we were supposed to meet for dinner, I told him about my ms. Funny thing happened...he called me the next morning and said "something came up" and he had to cancel our dinner. Next time, I will meet the person first, so they can see I'm an actual human being!"  Laura C.

"I met my gal who has MS about 6 years ago on the Internet. What caught my eye in her profile was a statement..."I have MS but MS doesn't have me" and that pretty much described her attitude about the whole thing. What eventually captured my heart was her spunk about it...an unwillingness to allow MS to keep her from enjoying life."  Rag S.

"I'm 23 and I was diagnosed 11 years ago. Dating has been hard, I'm a private person and I don't share the fact that I have MS with too many people. I agree it is best to disclose it as soon as you can, I usually end up doing it on the first "real" date with someone. Lately guys have been acting like they understand or it really doesn't bother them but I learn otherwise when an attack comes along. sigh. I KNOW there are great guys out there that will praise me for what I've been through, I just can't wait to find them!"  Britney

Well, there you go, straight from people like us.  I guess I'll just keep on keeping on then...  Any advice or stories readers?

B.C.H.F. is O.K.A.Y

I was at a Townhall meeting at work on Friday and usually, it's pretty uneventful - we go over budget, special events, new programs etc.  In case you don't already know, I work for a Canadian hotel and resort company...  Anyway, we have a committee that concentrates on doing good in the community and fundraising for local charities.

On Friday, they presented information on a new foundation that we'll be supporting.  When I heard about what this foundation does, I had to hold back tears.  I was so happy that someone has recognized this particular need in our community and that I have this amazing option if needed the next time I'm hit with a relapse.

It's called BC Hospitality Foundation (BCHF) and their mission is "to support a person whose livelihood in BC's hospitality industry is threatened by a serious health-related condition.  The BCHF also awards scholarships and bursaries to students enrolled in or entering hospitality-related programs."

BCHF not only helps to supplement an afflicted person's income, they also assist with purchasing medical equipment like wheelchairs & lifts, matching fundraising donations and funding expensive surgeries for the employee or their family member.

When I was diagnosed with MS this March, I had to take disability leave from work immediately and, because I'd missed SO MUCH work leading up to that point, my disability pay was dismal.  As a result, I burned through several thousand dollars in savings.  This also caused a great fear (that lasts to this day) that one day, I won't be able to support myself, will have to give up my freedom and will have to rely on family to support me.

Needless to say, I have been putting as much back into savings as I can while still trying to travel and do everything I want to do before my next relapse.  As you can imagine (or know because you're in the same situation), this is stressful.

When I heard about BCHF, I felt an enormous sense of relief and strangely enough, a renewed sense of independence.

If what happened to me 5 months ago happens again before I can grow my savings substantially, I have somewhere to turn within my work community.

When I got diagnosed with MS, so many of my friends and family asked me where they could donate for charity.  Well, I have an answer now and if you're still looking for a good cause, here it is...
To donate online, please see:

http://www.tipouttohelp.com/

Hello, Reaper?

The first question I had was "is it going to kill me?".

I didn't know a lot about MS before I was diagnosed so when I heard the verdict, I thought my future might be null and void.  I quickly found out that the majority of people with MS will live full and nearly normal lives with the reaper no closer than expected.

Most MSers will move on from this life due to the normal culprits: strokes, heart attacks, accidents, infections... you see where I'm going with this I trust.

Strangely enough, people with MS have a significantly lower incidence of cancer than the general population, especially women.  People taking beta-interferon (Avonex, Rebif & CinnoVex) medications are the exception to this rule and actually experience higher levels of all cancers for an unknown reason. Copaxone is not an interferon by the way...

It is very rare to have a death directly attributed to an MS lesion; that is disease activity that creates a brain or spinal cord lesion that stops vital life function.  The ways that MS can indirectly cause death include accidents from loss of motor function, choking due to swallowing difficulties and sadly, a hugely increased suicide rate.

The general consensus in the MS medical community is that the typical patient will live an average of 35 years following their diagnosis.  This puts me at 69 years of age before I croak out; that's good for me, I'll take it.

Does anyone know at what address I can send my R.S.V.P. to the Grim Reaper?

Wake Me Up Before You Go-Go

Yawn!  I am SO tired lately...



It's one of my MS symptoms that comes and goes without warning and it's so powerful.  I remember that, when I was diagnosed, my friend with MS told me that she once took a week of vacation just to sleep.  I thought "I'll never have to do that" but, you know what, I'm thinking about it!  ha ha

I felt sprightly and 'full of beans' last week but, then I hit the wall.  No sleep is enough sleep right now.  I can sleep 10 hours and still be yawning a few measly hours later.  What the #$%&?  Okay fellow MSers: is there something that I can do about this or do I just ride it out?  Advice please!  :)

Did you know that fatigue is the most common, #1 symptom of MS with over 90% of us suffering from it.  It's caused because of nerve damage, the energy it takes to deal with our symptoms, medication side effects and mental issues like anxiety and depression.

The MS Society of Canada recommends keeping a fatigue-trigger journal, doing aerobic exercise when possible, eating a nutritious diet and eliminating medications that trigger your exhaustion.

The MS Society has published a document on this subject if you'd like to read it but, they didn't take into consideration that the people reading it are already fatigued and it's really, really long...if you're feeling awake and want to check it out:  http://mssociety.ca/en/pdf/livingWell.pdf

This is all well and good but, I know that the people living with this day to day are a wealth of knowledge and great ideas.  Can anyone tell me what you do to get through this particular symptom?

Signed,

Snoooooooooring with my eyes open

Special Mention Goes To...

Jack!

Such a sweet little Labradoodle for my friend Amy and her family.  Welcome Jack - you're an ultra-cutie...  :)  xoxo

What a Quack

Alright, maybe it's my age or where I live or something but, what the h*ll is "snake oil"?!  I keep hearing this term and while, generally I get the idea, why is it always oil from snakes?  I've heard CCSVI & Liberation surgery termed this way, as well as everything from Low Dose Naltrexone to Vitamin D.  I decided to find out...

Okay, so, back in the 1800's (obviously before online shopping), vendors used to travel around and peddle their wares.  Elixers and potions were commonly for sale and the vendor would boast that they could cure anything that ailed you; several of these tonics were rumoured to contain the oil from snakes.  Today, the term snake oil refers to a product or service that has been proven to not live up to the seller's promises and hype.

Hmmm, nobody knows for sure what causes MS yet and therefore, nobody can claim that any one treatment option is working or not working.  I think this term snake oil is greatly over-used and just thrown out there without regard to it's true meaning.  Plus, it sounds stupid.  Right?!  I'm so sick of hearing it!  ha ha

I guess that, until we know what causes our disease, we can't know how to cure it.  I'm glad that people like Dr. Zamboni are trying to figure it out.  Even if their theories come to nothing, at least they're looking; unlike those who stubbornly insist that this is an auto-immune disorder and have blinders on to anything else.  Maybe it is auto-immune, maybe it's not...to simply dismiss another opinion as snake oil though is irresponsible in my opinion and just too plain easy.

In my life to date if I've learned anything at all, it's that the easy way is not usually the correct way.  Anything of value and promise typically takes a lot of hard work, thought, perseverance and stumbling around.  I've also noticed that people are wary of change and any new idea, at all, is met with scepticism no matter what. 

I know that a lot of people have been helped with so-called snake oil.  I take LDN as my medication for MS and it works for me.  You may say it's a placebo but, I say otherwise.  I know that the thousands of people showing amazing results from their Liberation surgeries say otherwise too.

Basically, if the term snake oil closes off peoples' minds and shuts down the possibility of researching something, we should stop saying it!  It's not even accurate in this case.  MS needs more ideas, more hypotheses, more investigation or we're just going to keep getting it and those of us that have it, keep getting worse. 

So, leave the snakes alone - I don't think they want the responsibility either and they've already taken enough heat over the course of history right?!  If you disagree, just open up the drawer in your bedside table in any hotel in the world and read a bit of that book...   :)

You Don't Say

I have been in a remission now for a couple of months with a reduction in almost all symptoms for about two weeks.  I am thinking of cracking open the shoe closet and pulling out some heels for the first time in almost a year!  This, to me, is VERY exciting - I miss those heels so much!  http://soiguessihavemsnow.blogspot.com/2011/04/did-we-break-upor-are-we-just-on-break.html 

My life has been go-go-go for the past two months and I've hardly had time to think about MS like I did when I was first diagnosed this March.  But...when I'm alone for a minute and stop...my mind goes there and it's scary, and shocking, and unbelievable still.  There are several things that I do to cope mentally and emotionally with this.

For example, I write this blog.  I spend a lot more time out with friends and family and less time alone.  I work really hard at my job and concentrate on that during the week.  I plan the trips that I want to take and organise my savings account to get me excited about it.  It's kind of a structured way to avoid a total mental breakdown and work through the shock and change of it all.

I have another way to bolster my spirits and get me moving forward again when I feel lost and afraid:  I read quotes. 

Yep, seriously.  I have always loved to read quotes about all topics.  I find that just those few snippets of humour, wisdom or experience can make me feel suddenly more hopeful than any long, drawn-out lecture or pep-talk can. 

I am not the best at condensing my thoughts (says Captain Obvious) so, I really admire other peoples' ability to say something in a word or two that stabs into your heart and sticks with you.

If you're with me on this subject, here are a few little nuggets of wisdom and truth that I like:

"All things are difficult before they are easy."  Thomas Fuller

"I am not afraid of storms for I am learning how to sail my ship."  Louisa May Alcott

"All my life, my heart has yearned for a thing I cannot name."  Andre Breton

"Here is the test to find out whether your mission on Earth is finished:  if you're alive, it isn't."  Richard Bach

"In three words I can sum up everything I've learned about life:  it goes on."  Robert Frost

"Problems are only opportunities in work clothes."  Henry J. Kaiser

"Whatever ought to be, can be."  James Rouse

"Be what you are.  This is the first step toward becoming better than you are."  Julius Hare

And, when I was grasping to make sense of my Grandmother's death and couldn't put my feelings into words...these quotes said it for me:

"Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling into at night.  I miss you like hell."  Edna St. Vincent Millay

"If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you."  A.A. Milne

So, I wish I could say it as short, sweet and perfectly as these people can but, I cannot so, I thank them for sharing.  Do you have any favourite quotes of your own?

Ali.

All In The Family

So, I'm in this genetic study at the University of British Columbia for the MS Clinic. They're looking at people's histories, where they were born and live, where their families live and what chemicals and levels of sunshine they've been exposed to.  Basically, they want to see if there is a correlation between some of the things we've been talking about (Vitamin D, genes...) and the onset of MS.

I had my first interview last night and it was pretty interesting.  I needed to pull out my resume to answer some questions about where I lived and worked during certain years (I was a nanny in Germany and a bartender in England for a couple of years) and had to provide an approximation of my chemical exposure over the years.

I grew up in Niagara so, I'm pretty sure that they weren't cautious about spraying the hell out of all of that fruit with crazy pesticides back in the day.  Sometimes I'm amazed that all of the people who grew up in wine and fruit producing regions before chemical regulations don't sprout a second head or third eye...but, maybe we just get MS and other fun stuff like that instead!  I'd much rather have MS than a third eye though; people stare at me enough when I have to use my cane, can you imagine if I looked like this...

Anyway, they also asked me a really hilarious question and prefaced it by saying "don't laugh".  You know it's going to be good when...  So, the question was:

"Are your parents related to each other?"

HA.  Don't laugh?!  Yeah right!  I know that way back in the day, people lived in much smaller communities, if in a community at all, and had to hook up with their cousins or whatever but, I was born in the 70's!  And since the invention of the Internet and subsequently E-Harmony, Hot or Not and various fetish websites, I don't think anyone has had to marry their cousin in a long time (well, unless it's featured on one of those fetish websites and they were actually looking for that).  

So, of course my parents aren't related and I'm guessing that 0% of the people in this study answered 'yes' to this question.  The fact that they asked it though made me realize that perhaps they're leaning toward the gene-mutation-theory outlined previously.  Hmmmmmm.... 

It just illustrated the fact that nobody really knows what causes this disease; they know what it does to you for the most part but, not why.  So, I guess we just have to keep trucking on, taking care of ourselves in any way that we can, eat well, drink lots of water, talk (blog) about the issues and most importantly........................

Don't marry your cousin!

Really. 

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Bladder Blather

Okay, WHAT is the deal with MS and bladder issues?!  I have worn a track between my office and work washroom and I swear, the hardwood in my home is developing a groove in a straight line to the bathroom...  I thought diapers were for the very old and the very young but, judging from the huge selection of incontinence products at the drugstore, I was wrong.

I am in a remission so, this symptom comes and goes for me right now but, I know that a lot of you deal with this all of the time.  How do you handle it?  I have my liquid intake down to a science based on variables such as workdays or not, distance from a washroom, time spent in a car/office/meeting...taking out the garbage...sleeping.  ha ha  I tell you, this is not easy while I'm trying to also do the "water cure" thingy as well!
http://soiguessihavemsnow.blogspot.com/2011/07/drop-in-bucket.html

Although this is a common symptom for MS patients (80%+), it's really annoying! I have heard from a ton of non-MSers out there that are also plagued by bladder issues.  Most people have incontinence during their later years, post-menopause, with prostate problems, after childbirth, with certain diseases (Interstitial Cystitis) or after surgeries like hysterectomy etc.

MS patients suffer from common incontinence, but we also have a variety of other bladder issues going on.  Urinary frequency is when you feel the need to urinate way more often than usual.  When you feel like you MUST use the washroom immediately or wet yourself, you have Urinary Urgency. Nocturia is the fun experience of having to use the washroom frequently at night - this also ties in to those dreams of water, water, water until your body wakes you to make a mad dash.  Not restful!  Urinary retention is the inability to fully empty your bladder and hesitancy is when you can not begin to urinate "on command".

So, yeah.  See what I mean?  Your little bladder should not take up this massive amount of thought, planning and worry when there are like, a million other things to think about.  These problems are caused when nerve signals to the bladder are blocked or delayed because of lesions in the brain and spinal cord.

What can we do about it?  Well, you can choose to self-catheterize if things get really bad or, behaviour modification also seems to do the trick.  This includes fluid regulation (not reducing fluid but timing of intake), reducing caffeine, orange juice and alcohol.  It's really important to keep up your fluid intake because, if you don't, you risk getting a bladder infection and, as we know, infections can lead to relapses.

Several people choose to go the medication route too.  There are so many medications out there to help or control all of the bladder issues listed above.  My favourite name so far, by far, is "Flomax" - to increase the flow of urine.  If I ever have to go on disability leave again, I'm thinking of creating names for drugs like this to amuse me and pass the time - although I don't know if it's possible to beat Flomax!  Seriously.

I used to be squeamish talking about bodily functions and things of this nature but, you know what, I figure that if it`s happening to so many people out there, you won`t mind so much.  Maybe we can get help with it and perhaps someone knows something that we don`t yet.  As always, if you have any suggestions for myself and the other urinally-challenged, send them in... I think only children who are potty-training and MSers concentrate on this stuff so much and I`d like to just leave it to the kids from now on!...

Special Mention Goes To...

British Columbia!!
Happy B.C. Day to everyone living in the province - nice time to take a day off!

In case you don't know, B.C. Day is a statutory holiday that falls on the first Monday in August.  The holiday is dedicated to the pioneers who built the colony of British Columbia into the province it is today.

Yay!  Thanks to them because it's an awesome place to live and holidays are ALWAYS welcome, right?!



Tofino, BC



Victoria, BC

Vancouver, BC



Whistler, BC