A Dream Come True

I'm walking outside with my friend; I can hear every step.  Click, clomp, click, clomp.  My cat is winding in and out between my feet and I almost trip.  It begins to rain.  I can hear the drops hitting the leaves on the trees and I can smell the moisture in the air.  It's a bit chilly.  We keep walking for what seems like hours.

BEEP   BEEP   BEEP

I wake up, turn off my alarm and when I look at the display, I can't believe it's already 7am.  I'm not rested at all.  I feel like I've been up all night walking in the rain.  What is going on here?

It's the Low Dose Naltrexone (LDN).  Some of you are nodding your heads right now.  The rest of you...keep reading.

LDN is an experimental oral medication used to treat M.S.  In its full dose, it is used to manage alcohol and opiate addiction.  In much lower doses, it helps to relieve the symptoms of M.S. among many other diseases.  I take this drug.

The great thing about LDN is that it began working for me within three days, it speeds up the time taken to recover from a relapse and several patients report that they have less lesions as evidenced by regular MRI's.  The major bonus is that LDN has virtually no major side effects.

Except One:  abnormal dreams.

Before LDN, I was already a vivid dreamer whose nights were jam-packed with magical trolls, flying bodily through the clouds, purple people, talking animals etc. I kept a dream journal and delighted in replaying my movie-like experiences upon waking. It was exciting going to sleep every night; it was an escape from reality and there was no way I could mistake my night life with the daily routine.  Until now.

Who has dreams about making coffee, putting on shoes (flats, no less), talking on the phone and sitting on the couch?!  For hours; all night?!  If I wasn't already asleep, I'd pass out from boredom.  My dreams (eight looooooong hours of dreams) are mimicking daily life so, it's like I'm doing what I always do on an average work day...24 hours a day.  Another M.S. patient taking LDN described her experiences like this: 

"…my dreams were psychedelic epic tales of suspense and surrealism." 

Lucky lady!!

Although, I am extraordinarily grateful for LDN and the relief I've gained from being on it, I can't help but laugh when I see the warning "may cause abnormal dreams".  I already had those in spades.  I really liked them.  I think that my pharmaceutical literature should be altered to read "may cause dreams so realistic that you realize you may have to spice things up".

So, I'm taking some travel plans down from the shelf, dusting them off and am planning a trip to Ireland.  Maybe I can see a real-life Leprechaun and then I'll be able to sleep a little less easy.  Although, I mustn't whine too much; even though I can't fly in dreams anymore, I can walk in real life.  And that, my friends, is better than anything.

Do any of you M.S.ers out there have any weird LDN-inspired dreams you'd like to share with the group?  I need them for my journal; it's getting a little sparse.

A Sheep In Wolf's Clothing

My Grandmother Dorothea used to always say "everything happens for a reason" and if you can't see the reason in front of you, you'll see it down the road.  Such a wise woman she was.

When I got my diagnosis, all I could say was WHY?!  I was utterly gutted, depressed and most of all, angry.  Like, furious.  A few weeks ago when I was on my way into this remission and doing well, I saw a woman about my age at the drug store.  She obviously had M.S. too and I remember thinking "she looks so mad".  Every movement she made and every facial expression conveyed a sense of anger and betrayal.  She was whipping her cane around like she wanted to hit something...really hard.

I remarked on this to my friend at a later time and she simply said to me "that is what you looked like". 

Wham.  What?!  I did?!  I thought I was doing such a great job of hiding it and being positive. Oh well.

I am doing MUCH better now.  If I had to wager a guess I'd say I am about 99% into remission and speeding along pretty fast.

But...

M.S. has taught me to open my eyes (now that I have my vision back! ha ha), smell the roses and enjoy life.  I used to power through everything with the end goal of getting it completed.  I was always looking to the future and looking forward to what it held for me.  Now, I know that the future is uncertain.

These days I have a new appreciation for "Right Now".  I smile more.  I laugh more and I look around more.  I'm not in such a great hurry and I spend less time in my head living in the future.  I am still a planner (don't think I'll ever lose that analytical side) but, I concentrate on planning the fun things that I can see down the road.  I try not to worry so much about the stuff I can't see yet.

Now I know what Gram was talking about.  I think there was a reason for me to get sick.  Maybe it was to force me to slow down and live in the moment.  I've never really done that before.  Maybe it was for me to reach out to other sick people and draw us together; maybe I can help someone else.  Maybe even just one other person.  I hope so because that's a lot of 'maybe's'.

She also used to say "This isn't a road block, it's just a speed bump". 

You know what Gram, you're right.  You were always right.  I'm listening now.

Love Sugar xoxo

UPDATE:  Several people have enquired so, to answer your question, my Grandma is 90 years old in this picture.  Yep, for real. 

Eye Spy

Right after I was diagnosed with M.S., I was sent to see an opthamologist within the same clinic.  I was in a state of shock and had no idea why I needed to see an eye doctor.  I sat in the hallway with my cane just waiting and staring into space.

A woman came up and sat beside me in the hallway.  Making small talk she asked "Do you have Optic Neuritis?"  I replied "No, Multiple Sclerosis." Well, she began to laugh and couldn't stop.  I had no idea what was so funny and thought briefly, maybe M.S. makes you crazy too.  Great.

It turns out that Optic Neuritis is a symptom of M.S. that affects approximately 30-40% of patients.  I had been showing signs of it for about 3 years before I was actually diagnosed and thought it was the old 'aging process' explanation again.  I was experiencing blurry vision that would clear on its own, flashes and spots and one day, I lost the bottom half of my vision in one eye.  It eventually came back right before I went to see an opthamologist on my own and I didn't think of it again until the whole M.S. thing.

During this time, I also noticed that my normally blue eyes were turning grey and kind of a steely colour.  I brought this 'phenomenon' up with my doctor very recently and now it was my turn for someone to look at me like I was crazy.  He chuckled and said "you've been diagnosed with Optic Neuritis right?"  I replied that I had indeed and then....duh, light bulb moment.  A symptom is loss of colour vision.  Textbook. Ughh.  My eyes weren't turning colour - I just couldn't see what colour they were any more.

I'll bet that a ton of you out there had no idea that this was a symptom of M.S.  I sure didn't.  I'm happy to report that I have almost all of my normal vision back and my eyes are blue again - well, at least to me.

So, now you know.  If you see an M.S.er out there with horribly mismatched clothes or perhaps studying paint swatches or eye shadows with an utterly lost look on their face; have pity.  We probably won't be out of style for too much longer...  :)

Presented (Mostly) Without Comment

All I have to say is, I'm glad that I did my own EXTENSIVE research before beginning any M.S. drug regime and did not listen to my doctor's extreme insistence that I use Rebif and Rebif only.  I'll stick with my Low Dose Naltrexone, thank you very much.  :)  My gratitude to Stephanie M. for sending along the following link; I had an inkling already but, now I know for sure...

http://www.wheelchairkamikaze.com/2011/05/big-pharma-behaving-badly-and-making-me.html

It's A Numbers Game

When I started this blog roughly one month ago, I thought that I'd write a few times, like, two people would read it and then I would shut it down. 

I was wrong.  I LOVE writing; it is such a stress-reliever and it has made me realize that I am not alone.  Not by a long shot.  M.S. tried to take me down; it tried pretty freaking hard actually but, due to the support of all of you out there, I'm doing really well.  I feel...happy, and...hopeful.  And strong.

My page views reached 5000 hits today across 21 countries and I would just like to say THANK YOU for reading.  I used to be such a private person but, when I got sick I couldn't do it anymore; I needed help.  Now that I've received such an outpouring of help and support, I don't want to be introverted anymore.  I realize how important a large network of supporters is, especially when you're ill.  I'm tearing up here...ha ha

I am taking the long weekend off (Victoria Day here in Canada) and will be back Tuesday.  Enjoy May 2-4 all you Canadians and for everyone else, have a great weekend!

Love Ali.
   

You're So Vein...

Before my M.S. diagnosis, I'd never heard of CCSVI.  If you don't have M.S. yourself or know someone with it, you may be scratching your head right now too. Well, a brief synopsis:

Until recently, most people were under the impression that Multiple Sclerosis was an autoimmune disorder.  In the case of M.S., this means that our immune systems recognize myelin (the protective coating around our neurons) as an enemy and begin attacking it.  This in turn causes lesions or sclerosis (scars) in the brain and/or spinal cord.  Hence the name Multiple Sclerosis.

Enter Paolo Zamboni, a professor of medicine at the University of Ferrera, Italy and loving husband to his wife, Elena.  Elena was diagnosed with M.S. at the age of 37 and Zamboni, watching her decline, vowed to do whatever he could to solve the mystery of her disease.  Romantic right?  And not just that, but maybe lucky for the M.S. community too.  So, in 1995 Dr. Zamboni began his quest to save his wife...

What he discovered is that M.S. may not be an auto-immune condition at all, but a vascular disease; a matter of simple plumbing.  Basically, Zamboni proposes that the veins draining blood from our brains are blocked, malformed or even twisted, causing blood to accumulate and flow back into the brain.  This is a problem because iron is a heavy metal (not the kind you can rock out to) and can cause cell death and inflammation. And basically, what is Multiple Sclerosis?  Let's all say it together:  cell death and inflammation.

Dr. Zamboni named this disorder Chronic Cerebro-Spinal Venous Insufficiency or CCSVI.  You can stop scratching your head, now you know.

So, how would someone go about fixing faulty brain veins?  Well, according to Dr. Zamboni, you perform a venoplasty and in some cases, a vein stenting.  This procedure involves inserting an IV catheter into the femoral vein on the upper thigh.  Following on x-ray, the doctor winds it all the way up to examine the azygos vein (that drains the spinal cord), the subclavian veins (that drain our arms) and the internal jugular veins (the brain-drainers).

By squirting dye through the catheter in the thigh, you can see on x-ray where any drainage problems are happening.  If an obstruction is found, a balloon is inserted into the problem vein or veins and inflated, stretching the walls and restoring proper blood flow.  This surgery in reference to M.S. has been termed the "Liberation" procedure.  Usually the balloons are good enough to keep the veins open and flowing properly but, in some cases the veins will get lazy and go back to their old ways.  This is when a stent will be inserted to keep those suckers open...and this is where there is A LOT of controversy.  Those little stents can come loose and travel to places like your heart or more commonly, blood clots can form around the stents in place; this is called thrombosis.

This is not the only controversy surrounding CCSVI and Liberation.  Take a peek at any article, show, news spot or even talk to a few different neurologists and you'll see the major polarizing effect that this information is having on the M.S. community around the world and especially, here in Canada.

Now, I know I promised to keep this post a brief synopsis so, I'll continue on this topic over the next few entries because there is a ton of info to cover.  I also know that we Canadian M.S.ers and our families have STRONG opinions and feelings regarding how our country is addressing (or not addressing) the issue of CCSVI.

Please email me (address in my profile to the right) or comment if there is anything regarding this topic that you'd like to weigh in on and I'll address it.  I also have very strong opinions and many, many, many questions on this topic so, I am looking forward to diving in.  If any of you have had, or know someone who has had the Liberation procedure and would like to share, please feel free to contact me.  I know that there are a ton of people out there right now wondering if they should take the leap and get the procedure themselves (including me) and all we need is some more information.


As always, thanks for reading!
Love Ali.  xoxo

Special Mention Goes To...

HAPPY BIRTHDAY KIM!!!!!!!

Have a large glass of wine and enjoy the day; I'm sending birthday wishes your way!

Ali.

Pro Fur

Fur, down, feathers, fins, whatever; I love it!  I can't name one person in my entire family, immediate or extended, that doesn't adore animals.  I am one of those people that thinks babies and children are really cute but, put a goofy puppy in my path and I just melt.  I am fully versed in the animal baby-speak voice; you fellow animal lovers out there know what I mean by this.

I currently share my home with two adopted cats named Montie and Roper.  Well, it's actually more accurate to say that, by all appearances, I live in their house and exist to cater to their every wish.  If you look in the dictionary under the definition of "pampered" you'll see a picture of my pets.  Check this out... 

That being said, I don't mind it one tiny bit.  I don't mind the little tumbleweeds of fur that I vacuum up every other day, or the constant expense of industrial sized lint roller refills.  I don't mind the ever present threat of asphyxiation due to Roper's penchant for sleeping on my pillow or Montie's old-man snoring while nestled in the crook of my arm. 

They make me feel better.  They rely on me and don't care if I walk funny sometimes (unless I step on a tail accidentally) or can't go to work or drive.  The only time that they stare at my cane is if it interferes with the sight line to their food bowl.  Actually, my recent disability leave went in their favour as I was at their beck and call 24/7 and they always had a warm lap to sleep on.  My M.S. does not affect them at all and I really like that; it makes me feel healthier somehow.

If I didn't live in a condo, I would most likely have an entire petting zoo situation going on.  I have always wanted horses, dogs and funnily enough, a cow.  Not to work or ride or even do anything purposeful at all really; I'd just like to adopt and be surrounded by a bunch of animals.  Some people want a brood of children, some want absolute privacy and space; I want fur.

My sister and I went to the zoo yesterday and when we approached a gorgeous cheetah, she was resting under a protective tree branch (it was raining) and she was purring.  A wild, huge cheetah...purring.  So, of course, I totally turned to goo.  The animal-baby voice came out.  Embarrassing.  Unavoidable.  Animal-baby-voicing a cheetah!  ha ha

Can any of you out there relate?  Who or what makes you feel better when you're ill?

Here are a few more pictures of the animals in my life because I just can't resist:

Jake & Harvey

Cessna

                                                                 

Zarino

Buddy

Sly

 If you have any special pet-nurses that you love, send along their pic and I'll post it here for you.  :)

Ali.

Poof !!!

So, the blogger website was down for the past two days and I see that my last post (the sadness one with reference to footie pajamas) has disappeared.  Well, perhaps it's for the best; I received A LOT of emails from worried family & friends!

Yes, I am going through a tough time and yes, sometimes I get really down but, not all the time.  Not even most of the time.  I think I'm following the normal path of a Multiple Sclerosis diagnosis and I'm not too worried about spending a few days in the p.j.'s if you're all not!  I would however, like to share some of the beautiful comments that I received because they help not only me, but maybe someone out there going through something difficult as well.  Enjoy...

From:  Dad

"That picture even looks like you at what seems like about ten  years ago.  I'm sad too Al.  If I could swap your problems for my bum hip, I'd do it in a second.  There is not much that I can help with, and it  is frustrating me.  I wish that I could give you a big hug every day and make it all better.  Your blog must be difficult to scribe. I know that it makes me laugh,  it makes me cry, it makes me sad,  but when  I think of some lost soul travelling down your same rocky road reading it and being comforted by it, I'm mostly so damned proud of my 'Little Girl'."

From:  Uncle Mike & Auntie Diane

"It must be hell to have MS.  As you mentioned, there are a number of stages of reaction, and by the look of it you're sampling them all.  Heavy stuff:  sadness, grief, guilt and God knows what else.  Did I say grief?  Good grief!  When some folks find a private hell, they have trouble climbing out of it.  That's a bad neighborhood, not nice at all.  Start digging upward." 

   

From:  Uncle Kent

"My mom, your grandma, had a way with these things.  Time after time as I was growing, she would direct me thru THE DOOR.  In other words, have all those feelings but work towards going through the door, closing it on that side and get on with what you find on the other side.  She told me that way you don't miss what is on the OTHER SIDE."

From:  Mom
"I have a new one, SOTT's Guilt (sign of the times).  The world, especially the media, is, to me, the biggest contributor to guilt.  Pressure to be perfect is very pervasive in our society, even when we are ill.  Take this pill, do this diet, work harder and then you too will be perfect and happy.  What a crock of sh..............!!!!!  Like Gram said, just try and enjoy all the moments, good and bad."

From:  Tom & Carol
"You are always in our thoughts.  It would be easy for us to say have a postive outlook, enjoy it to your fullest like Grandma would like you to.  We know you are trying hard so just keep up the good progress."

These inspiring and supportive words have helped me to realize that, even though I'm sad sometimes, I'm certainly not alone.  Thank you to everyone who wrote me; you are all so special to me and you really do help so very much.

Almost all of you mentioned Grandma and I miss her more than any words could express but, her memory and spirit is with me 24 hours a day.  I know with the lessons and words of wisdom that she bestowed on me my whole life and with your support, I'll be on my way back up in no time. 

Hugs & Kisses, Ali.  xoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxo 

 

I'd Like To Thank The Academy

So, remember when I said that I was in the Acceptance Stage of grief?  I (unknowingly) lied.  For sure.  100%

I am actually in the Sadness Stage.  Or, I'm thinking of renaming it the Knocked Down, Dragged Out, Sobbing on the Floor in Feetie Pajamas, Chocolate-Guzzling, "Why Me" Wailing Stage (A.K.A. KDDOSFFPCGWM Stage) as indicated by my (behind locked doors) recent behaviour.

I think that my M.S. diagnosis has just sunk in for real.  The fact that there is no cure yet and such wild uncertainty with regards to long-term disability has me feeling a bit overwhelmed and...sad.

So, in that vein, I would like to dedicate this post to all of the amazing friends, family, clients, colleagues and readers out there who are helping me SO much with your comments, emails, page views, phone calls, flowers, cards and hugs (NOT the girdle-band kind!).  I know that I could not have made it through the past two months without all of you; the entire time would have been spent in the KDDOSFFPCGWM Stage! 

You ALL ROCK!  THANK YOU!   

Tons of love and kisses, Ali xoxoxox 

P.S.  If you call me when you expect that I'll be available and you get voicemail...call back.  It's difficult to pull myself up off of the floor in feetie pajamas under the weight of all those chocolate bar wrappers and Kleenex.  Seriously, I'm there.  Call me back. 





Sentimos, Es Tut Mir Leid, Maaf!...Sorry

Guilt (gilt) - noun:  Feelings of culpability especially for imagined offenses or from a sense of inadequacy:  morbid self-reproach often manifests in marked preoccupation with the moral correctness of one's behaviour responses originating in inner guilt and uncertainty.     

I have learned something unexpected and strange about myself in the past two months.  For me, with illness...comes guilt.  I started feeling it right away; even before I was diagnosed with M.S. this March.  I couldn't walk as fast as I wanted or keep up with everyone - I fell behind.  I was afraid that I appeared unmotivated or out of shape.  I couldn't put a symbolic shovel-full of earth on the grave at my Grandmother's funeral because I had no balance.  I was afraid that I looked callous and uncaring.  I couldn't attend several important events like birthdays or going-away parties for friends and colleagues because I was just too tired and worn out.  I was afraid that they would think I didn't care about them or was selfish.

Now today, even though I am fully aware of my illness and it's limitations, I still can't shake this persistent feeling of guilt and, even worse, shame.  Okay all of you Psych majors out there; what's the deal here?!  Why is it so difficult for us to ask for help or simply, some extra time to heal?

As many of you are aware, I was off of work for 6 weeks to recover from this recent relapse.  Even though I knew I shouldn't, I checked my work email daily and kept up to date on business levels and happenings that I was powerless to do anything about anyway.  I felt disconnected, out of touch and mentally impotent, even though I KNEW logically that it was the very least of my problems at that time.  I returned to work two weeks ago chomping at the bit but have been trying to "take it easy".  My neurologist told me "not to be Wonder Woman" (bless her - she doesn't know me very well yet!).  Now, I am not so hot at this concept!  I am a former work-through-luncher, stay-late-just-to-get-it-done-er, can't-leave-it-incomplete-er.  Can you relate?

It's so messed up; now there are several different kinds of guilt in my world:

1)  M.S. Guilt = MSG
(To be clear, not the kind that makes you want to be guilty again in an hour)
Definition:  I feel an obligation to myself and to my health so take it slow and be careful.
   
2)  Everything's Fine Guilt = EFG

Definition:  I feel a duty to be my 'old self' and not be a burden on anyone else so, don't take it too slow and don't be too careful.

3)  But I'm Too Young Guilt = BITYG 
Definition:  I can't call in sick to work; I'm too young to take a real sick day!  I'm letting everyone down and shirking my responsibilities; I'm too young to have a disease!  I WANT to do everything I used to do with no problem or second-thoughts; I'm too young to care about this so let's party!!!!!

4)  I'm Not Sick Enough Guilt = INSEG
(A.K.A.:  Now This Is Just Messed-Up Guilt = NTIJMUG)
Definition:  I didn't need to use my cane today but, other people with M.S. are in wheelchairs.  I don't need to use the Poise pads anymore but, other people have Cancer.  I think this is commonly referred to as "survivor's guilt" or something akin to that and, well, it's not fun to say the least.  And frankly, I just don't get it.  Psych majors, we need you again!

You can have any combination of the above too - for example, sometimes I work really hard at getting caught up on the paperwork etc. that I've missed to alleviate the BITYG guilt but, I work too hard that I get tired and then I experience the, you guessed it...MSG guilt of not getting enough rest.

I know that I've been asking a lot of questions in my posts lately and looking for help from you readers but, they don't teach this stuff in school and I'm a newbie. Sorry about that.........oh, damn.  Okay, I'm not sorry...or guilty.  I swear.  Now I feel guilty that I'm lying..........gahhhhhh, no, I'm fine, really.  Oh f&%k it, if you have any advice, please write.
Hurry.

Love Ali xoxo

Zzzzzzzzzzzzz......

Just WHAT is it that makes me SO SO SO tired all of the time lately?  I know that I have M.S., I know that I need to take it easy when my body says "slow down" but, really, why do I get exhausted from the smallest exertion?!  Anyone?  Basically, my entire weekend consisted of:

Friday evening = Come home super-tired from working all week.  Eat dinner, talk on the phone, make plans for the weekend, pass out for 10 hours until a paw hits me insistently in the face.  See the following link for dramatization:
http://www.simonscat.com/Films/Cat-Man-Do/

Saturday = Bathe, get ready, pick up a bottle of wine, drive to sister's house to have girl's night with her and friend.  Have crab-stuffed salmon for dinner, visit other friend to see house renovation, have a couple of glasses of wine, girl talk and fun, watch Game 5 hockey game (by the way...BOO Vancouver!) and go to bed relatively early.  Sleep for another 10 hours.

Sunday = Wake up, have coffee with the girls, help sister clean up her deck for the summer, call Mom to say Happy Mum's Day, get hair done and .... TOTALLY HIT THE WALL.  What the heck!!!????

All of a sudden I get TIRED like nothing I've ever experienced before this M.S. relapse.  Eyes crossing, head-bobbing, shoulder-slumping exhaustion.  It's not like I did much of anything, I got plenty of sleep and had a total of two small glasses of wine over 2 1/2 days.  I ate well, did not overly exert myself and took my Low Dose Naltrexone on schedule.  So, what is going on here?  Do you fellow MS-ers get like this?  What do you do about it?  It's getting pretty difficult to have the schedule of a 34 year old with the energy of an 80 year old.  Actually, I see 80 year olds all the time and I could swear they have more spring in their step than I do right now!  Are they putting some special elixer in their afternoon tea that you don't get access to until you turn 65?  Well, I need it now.  If any of you have insight on this topic, I beg of you, please send me a quick line and I'll read it in between naps!      

I Need A Lighthouse On My Forehead

When you have M.S. and you suddenly can't recall the name of someone you've known for years.  When it's just on the tip of your tongue.  When a word like "the" looks really weird all of a sudden and you're not sure if it's spelled T-H-E.  Don't start worrying about Alzheimer's too...

You've got Brain Fog.

I'm quite sure that Brain Fog is not the official medical term for this phenomenon but, it's certainly apt.  For the last three years I've noticed that my usually sharp memory has been failing me at times.  For example, I was telling my friend a story the other day (laughing at just this topic) about how, at her engagement party, I ran into a guy that we had gone to school with since we were 9 years old.  He showed up at her party and when I ran into him, I shouted "Alfred", really excited to see him for the first time in years.  He looked confused and I realized...his name isn't Alfred - that just didn't sound right but, I could not remember it for the life of me.  He corrected me with a hurt look on his face:  "It's Albert".  I apologized profusely and blamed the drinks I'd had earlier.  Totally lame.
When I first saw my neurologist I asked her if the changes in my cognitive function and memory could possibly be attributed to M.S. and she smirked a little, paused and asked me "what else did you think it was?".  I told her that since I'd turned 30, I had been noticing problems with word recall, information retention and the like.  I told her that I thought I was seeing the first signs of aging and that it was normal.  Remember people, denial is a super-strong little creature.  Anyway, she laughed again (more like a guffaw), shook her head and said "Alison, you're a little too young for that!".  So, another little mystery solved.  Brain Fog.

There are a lot of theories out there as to what exactly causes this set of symptoms.  One popular explanation is that having M.S. makes it more difficult for your body to get rid of toxins and that this somehow causes the fogginess.  It is suggested that you can help your liver to detox by eating more garlic, food supplements like Dandelion and drinking green tea.  Fatigue is also said to be a major factor in contributing to The Fog; which all MS-ers know is just a problem in general no matter your mental acuity at any given time!  Other causes on the list include medication side effects, infection, inflammation (again, another no-brainer with M.S.), anxiety...and on and on and on.  So, I have no idea what causes brain fog; it could be little green men for all I care.  I'm just content to know that it's REAL, other people can relate and I'm not going nutter by myself over here.

Now, where did I put my car keys?  

It's A Bird, It's A Plane, No...What IS It Exactly?

Before I got my diagnosis of M.S. this March, I knew of the disease but, didn't know a lot about what it was exactly.  I think that most of us who are not directly affected by it are the same; we all probably know of someone with it but, don't know exactly what it is.  So, my post today will be about the different types of M.S. (which I didn't know existed before).  I am personally RRMS (Relapsing Remitting) right now and this type often turns into SPMS (Secondary Progressive).  Let's begin shall we?

Relapsing Remitting M.S. (RRMS):  This type is defined by episodes (A.K.A. flare-ups, attacks, relapses, exacerbations, pains in the a#s) that begin suddenly over the course of a few hours to days and last anywhere from 48 hours to several months.  In the period between attacks, a full or almost total recovery is achieved and function goes back to what it was (or almost) before the attack.  The time between attacks varies by person and can last months or even several years.  (Keep your fingers crossed for me here people :)  !!)  Approximately 85% of patients have this type of M.S. at the time they are diagnosed.

Okay, moving on...

Primary Progressive M.S. (PPMS):  This son of a b*tch type of M.S. is a slow accumulation of disability without any remissions or breaks.  Symptoms may stabilise for short periods of time but, overall there are no remissions.  10% of patients have this type and are generally diagnosed after the age of 40.  This is also the only type that affects men and women equally; otherwise the incidence is much higer in women than men. (Almost 2 to 1)  Short end of the stick here ladies when you add childbirth, menopause, menstruation etc...  :)

Next.....

Secondary Progressive M.S. (SPMS):  This is the boogeyman in the closet for me folks.  SPMS begins as Relapsing Remitting but, over time, the remissions and breaks happen less and the relapses or flare-ups get worse and occur more.  Eventually you end up with constantly accumulating disability on a steady course.  About 50% of people diagnosed initially with RRMS will turn into SPMS within 10 years and approximately 90% will be SPMS by the time they die.  This is the ticking time bomb that I hear in my head constantly...  not fun.

And on to the biggest A-hole in the bunch...

Progressive Relapsing M.S. (PRMS):  If you have this type of M.S., you're among a tiny 5% of the MS population.  PRMS-ers have M.S. that steadily worsens from the beginning but, just to make it a bit sh*ttier for you, you're also going to have additional attacks, or relapses during this time.  So, even though your relapse will eventually subside, you're just going to go back to a baseline of progressive disease.  This is the boogeyman that doesn't care if you see him and follows you around ALL the time.

So, to sum up, the only words that describe Multiple Sclerosis for me are vulgar curse words.  This is why we need to fundraise, be vigilant and aggressive for ourselves and our loved ones.  To all of you out there who are not currently active in the M.S. community but are interested, PLEASE help us to beat this.  If you're in Canada you can find upcoming events and volunteer oportunities at:

http://mssociety.ca/en/involved/default.htm 

Otherwise Google your local M.S. Society to get involved. 
As always, thank you all for reading...Love Ali xoxo

Ummmm, Towel?...Anyone?

Incontinence Episode (Chapter Two)

After about three weeks, the Prednisone IV really began its work and I started to regain function in my legs, bladder and vision.  To celebrate and get out of the pajama-uniform, I decided to go out on a Friday night for a remission-is-on-the-way mini party with my sister and friend.  At this time I was most definitely not anywhere close to "better" but, in comparison to how I was even a couple of weeks before, I felt like a new person.  Perhaps I overdid it just a bit.  :)
We went out to my favourite pub on the river where the float planes come in and found a table by the window.  We ordered some dinner and noticed that bottles of wine were 25% off so, great, bottle of red it is.  After the dinner hour, the pub turns 'semi-club' and a DJ comes out for some fun.  By this time we were on bottle #2 and feeling no pain.  We were stationed not too far from the washroom and I had suited up with some Poise before leaving the house so, things were good, if not a little fuzzy around the edges.  I couldn't dance yet (picture Elaine from Seinfeld) and was still pretty wobbly so, I enjoyed my wine and hung out in our little section and got to know the DJ.  Bottle of wine #3 and we're having a jolly old time when we decide to switch venues and go out on the water-front deck.  Away from the washroom.  And, again. Bottle. Number.  THREE.
Oh, I forgot to mention that I was feeling so good, comfortable and secure that a bit earlier in the night, I decided to remove the Poise.  I know, I know...A tipsy mind is not an accurate mind.
Anyway, we make our way out to the deck and situate ourselves at a great table on the water where we proceed to make some new friends.  And we ordered, you guessed it, bottle number #4.  If any of you are doing the drunk-math, this bottle was basically free with our 25% discount so, we figured, "why not"?!  Well, I will tell you why not right now.
All of a sudden I HAD to go pee NOW and our new location could literally not be further away from the washroom!  OH NO.  I stand up with a horrible, panicked feeling and proceed...to wet my pants.  At my favourite pub.  That we go to all the time.  On a lit patio in front of the new friends we'd been partying with all night. For my celebration of having increased mobility and...bladder function.  Without the Poise back up I'd used earlier in the night when I had a clear mind minus copious amounts of wine.
Ahhhhhhhhhh.  This is WAY worse than the mall!
So, I have to limp through the entire bar with really wet jeans and make my way to the washroom where I proceed to have a complete mental breakdown (not really unusual for the women's washroom at the end of a Friday night though so, nobody batted an eye).  I attempt to make the situation less noticeable, grab the girls and we high tail it the hell out of there into a waiting cab.
Cost of taxis for the night     $30
Cost of dinner + wine          $100
Cost of dry-cleaning outfit   $25
Learning to never anger the bladder-gods during MS relapse   Priceless

L, M, N, O...

It's time.  I promised to share my embarassing bladder-issue stories and people have been asking me to tell ever since I mentioned this issue in my first post.  I just knew that everyone would find this topic SO funny; aren't we all just a little bit evil inside?!  Me included...ha ha ha  

Well, it all started shortly after my relapse began to get really unmanageable and I just could not control my bladder.  I literally had about 30 seconds of warning before I was doing the pee-pee dance and without much mobility in my legs, I constantly looked like a drunk person limping frantically for the washroom.  I also had to "go" approximately 30-40 times a day;  all times of day, morning, noon and night.  Needless to say, I was not getting much rest and I had to rebudget based on toilet paper for a couple of months there.  I now know what pregnant women feel like and ladies, I feel for you truly.
The first 'incident' happened about two weeks into my disability leave from work.  I was sick of lying around in my pajamas on the sofa not being able to leave my apartment so, I planned a brunch date with my friend and sister and made sure I picked a table close to the washroom so that my meal would not interfere with my cubicle-dates.  Everything went well; food was good, conversation witty and confidence in reentering the living world reestablished.  Speed ahead to the drive home (sister driving of course) and she asks if I'm up to stopping at the mall for a quick second.  Literally run in, run out.  I say "sure" because I'd just finished appeasing the bladder-gods at the restaurant and was sure that I'd be okay for another 10 minutes until arriving home.  Wrong.  I got into the mall entrance and suddenly, OH NO, I HAVE to go pee NOW.  Ahhhhhhh, fantastic, there is a washroom right there.  So,  my cane and I limp on over as fast as we can and..........."Out Of Order, Please Use Facilities in Mezanine".  ARE YOU F*&^ing kidding me?!!!!!!!!  Major issue!  So, I send my sister off in search of the nearest washroom and she's gone for a long time so, I'm starting to fear it's too far away and I'm not going to make it.  She finally comes back and says, "it's not too far, come with me".  I start off on my mission praying to the Kegal-gods now and...they don't listen.  With every limp I take on that cane, I begin to wet myself a little.  Limp, wet, limp, wet until I am limping along like a woman posessed and I can't hold it in anymore...no, not that...the tears.  Rivers of desperate tears in the middle of the biggest mall packed with people.  Rivers of urine making their way down my legs.  My sister at that point saw me crying and felt so unable to comfort me that she started balling too.  So, don't we look like a pair, both crying, only one wet and disabled but both getting STARED at of course.  We finally make it to the washroom and if I wasn't crying already, I'd be crying from relief at this point.  And what do I find - a huge line up.   So.................I wait.  And wait.  And wipe tears off my face.  And wait some more.  I finally get into a stall and just collapse on the toilet (not having to use it any more obviously!) and just wail my little heart out.  You'd think that a random woman or two would maybe knock and ask what's wrong but, let's face it, we're women.  It's totally not odd to see a female crying in the middle of a washroom, or anywhere really, on any given day.  You know what I mean girls.  So, to finish up this particuar incident, I cleaned myself up, washed myself off, emerged from my cubicle sanctuary after many minutes and we limped the hell out of there as fast as we could.  We got into the car, made a quick swing by the liquor store and then were home 10 minutes later after the first of the Incontinence Episodes.  After that day, I did not leave my house or pajamas (or bottle of wine) for 6 days.  I refused to answer my phone, return email or talk to anyone aside from my sister and mother.  After finally reaching out to two fellow MS-ers I received two WAY worse incontinence stories, a recommendation to get out and invest in some Poise pads and some hope.  I have a funnier story but, I'll save that for tomorrow.  So, people, put yourself in my shoes, thank god it wasn't you that day and laugh an evil laugh because now that it's over, it's pretty freaking funny.  I now know that I'm not the only one experiencing these problems and all you can do really is laugh...and strap on a Poise pad when the going gets tough.  And damp.