Onward and Upward

A while back when I was feeling down and a bit useless, well, my feet, legs and bladder were actually being useless...  My Uncle Mike wrote to me that life is like riding a bike and that "if you slow down too much, you'll fall".

I have been feeling SO much better lately and in the past week, a couple of people have learned that I have MS and are totally surprised - telling me that they would never know unless someone mentioned it.  So, I've taken Uncle Mike's advice, removed the kid gloves with which I've been treating myself, and have jumped right back into the hectic life of a 34 year-old.

With that said, now we can discuss stress and how to handle the craziness when you have to deal with a disease that makes you super-tired at the hint of mental or physical strain.

It has not been proven definitively that stress can cause an MS relapse or worsen existing symptoms but, I believe that stress caused my last relapse 100%.  I believe this because as soon as I heard that my beloved Grandmother was dying, both of my feet went instantly numb.  I just spiraled down into a wretched, intense relapse (that led to my diagnosis) from that second on.

I also know that when I get stressed at work or I'm pushing myself too hard, my walking and bladder function gets much worse immediately.  Do any of you have this experience as well?

The MS Society of Canada tells us that any chronic illness can cause ongoing stress due to the uncertainty of the disease, the visibility of symptoms, having to adjust and readjust to changing symptoms constantly, financial stress and loss of control.

In times of stress (for me, when my job gets nuts), more energy is required to think, multi-task and problem-solve.  Dealing with increased demands like this drains the "stress-handling-reservoir" (ha ha) and leaves us precious little left to deal with our very demanding illness.  I think this is why stress makes many of us experience a worsening of symptoms at the least ideal times.

So, question is:  what to do about it?  Well, the MS Society says that there are several ways to handle everyday stress effectively.  For example:

* Simplify your life. Relax a few standards. Let the grass grow. Ask yourself if you want to do a particular task, if it needs to be done perfectly, or not at all.

* Plan ahead in situations that could cause stress. Take a book with you if waiting may be necessary. Make plans for where to meet or call if plans go awry.

* Get extra sleep before family gatherings or important events.

* Learn to say no. You don’t have to do anything if you don’t have the time, energy, or desire.

* Make your requests for help as specific as possible: “Would you please help me by ...”

* If old interests and activities become more difficult or too time consuming, replace them with new ones that fit your current needs.

The MS Society has actually published a guide to handling stress and have a ton of helpful suggestions.  It's kind of long so, I'll give you the link if you want to take a look.  There is some really good advice in here:

http://mssociety.ca/en/pdf/TamingStress.pdf

Anyway, I'm going to have to try something because I'm beginning to work through breaks again at work, not eat regularly and am starting to feel totally overwhelmed and bogged down.  I know that I can't go back to the pre-MS days where I would work myself ragged consequence-free.  I have a responsibility to my health now but, as you all know, it's hard to slow down once you get up some speed!

The exact opposite problem that my Uncle Mike noted, ironically enough...

So blog-friends, I know that you have some stellar ideas of your own on how to deal with stress.  Please comment or email me if you have some good stress-busting tips.  And, as always, thanks for reading and supporting.

Love Ali xoxo

The Sweetest Thing

Sometimes people surprise you by how much they pay attention, have the capacity to care and show empathy.  

As I've mentioned before, I work for a Canadian hotel & resort company.  Over the years, I've formed a close relationship with our most frequent guest, Gregory, and his wife Barbara.  When I was going through those horrible, early days of my diagnosis, they were right there to help out and support in any way they could.

Today, Gregory gave me a call to meet him in the lobby.  He then presented me with a present from his wife and himself...it is a little high-heeled shoe.  The card was so thoughtful that it nearly brought me to tears and mentioned that I didn't have to give up my love of heels because of MS; I can just have them in another size for now.  

Isn't that the sweetest thing?!  So, today I thank you Barbara & Gregory - you are the best!  I appreciate your gift and all of the other times you've gifted me with either items or supportive words and thoughts.  You are so appreciated!

Love Ali   xoxo

My Brain is Aflame

When I first got my MS diagnosis, I was totally adrift.  I didn't know a lot about the disease, what causes it or just what to do about it...If there was even anything I could do about it.  So, I did what I always do when I am freaked-out by something; I research the holy hell out of it until it's not scary anymore.

By speaking to others who have this disease, reading up on countless websites, cookbooks and pamphlets and asking for help from the nurses at the MS Clinic, I noticed a ton of buzz about anti-inflammatory foods.

The first thing that my neurologist did when she saw that I was smack-dab in the middle of a horrific relapse was to put me on a 3-day course of IV Prednisone; a corticosteroid that reduces inflammation in the brain and spinal cord.  After this procedure helped me, I got to wondering if foods that are naturally anti-inflammatory would help my symptoms too.

If you've been wondering the same thing, I'm going to help you out by posting a list of anti-inflammatory foods so that you don't have to go looking all over the place like I did.  Hey, it kept me busy during my looooooong disability leave but, what remitting or stable person has the time?!

I'm not going to list items that are uber-gross or anything; these are all things that I've been incorporating into my diet that are readily available.  You won't have to visit a voodoo priestess to find them...

* Omega 3 Fatty Acids - Found in wild salmon, flax seed, walnuts, extra virgin olive oil, avocados and small fish like sardines and herring.  (Or you can take an Omega 3 supplement too - I take 2 per day).


* All berries but especially blueberries, cherries, apples, pears, grapefruit, papaya and plums.


* Onions, garlic, bell peppers, broccoli, cabbage, asparagus, sweet potato, and shiitake mushrooms.


* Green tea, dark chocolate


* Turmeric, oregano, rosemary and ginger.


* Red wine.  (Yes, for real)

So, see, not so hard.  I use nearly all of the above all of the time and incorporate anti-inflammatory items into everything.  For example, tonight I made scrambled eggs and added some turmeric.  I also had organic oatmeal with dried blueberries, cranberries, flax seed, apples and chopped cashews mixed in.  That is a mighty yummy breakfast-for-dinner anti-inflammatory powerhouse right there folks.  And, I despise cooking so, it only took five minutes to throw together.

A simple rule to going anti-inflammatory is to stay away from all processed foods and eat as natural as possible.  Yes, this means driving right by McDonald's even when you have PMS or are hungover...seriously, just look away.

Do you follow an anti-inflammatory diet?  If so, send me your favourite items or recipes and I'll share them here...

Young Blood

Just in time for Halloween, all of you Twilight, Vampire Diaries and True Blood fans are going to love this one!

According to a study out of Stanford University, when older mice were injected with the blood of young mice, they generated three times the amount of nerve cells as they normally would.  And, what does MS destroy?  That's right: nerve cells.

The young blood injections also resulted in the increased production of neurons, more signals travelling throughout the brain and a decrease in inflammation.

The older mice were found to have more of a protein called eotaxin circulating in their blood.  Interestingly, when young mice were injected with eotaxin, they too generated fewer nerve cells and experienced memory loss.  I don't know how you measure memory in mice; maybe using some kind of cheese maze...???

Anyway, this is great news for MS, Alzheimer's, Huntington Disease, dementia etc.  Not to mention your run-of-the-mill can't remember where I put my wallet issues as we age.

We're just going to have to wait for human trials and data but, it's excellent that researchers have our backs and are working non-stop at helping us out.  Until then, you vampire-lovers are just going to have to keep your neck warmers on.

Beautiful Inside

When I hear the word "Botox", I immediately think of Hollywood actresses with their faces pulled so tight that it looks painful for them to smile.

Botox is a neurotoxic protein produced by bacteria called Clostridium Botulinum. In large doses, this bacteria induces botulism, a severe illness that causes paralysis and is usually transmitted through food poisoning.

So, why would anyone want to inject this bacteria directly into their bodies you ask?  Well, in small, diluted doses, Botox has been used to improve or prevent the appearance of wrinkles, brow furrows, creases and frown lines.  Interestingly enough, Botox is also used to treat medical conditions such as uncontrolled blinking, dystonia (uncontrollable body movements), excessive sweating, migraines and enlarged prostates.

And, why am I bringing up this topic on an MS blog?  I recently heard that the FDA has approved Botox for use in overactive bladder in MS patients.  Botox has been found to relax the bladder while allowing it to store more urine overall and thus, reduce leakage.  It is helpful in improving or relieving urinary frequency, urgency and incontinence.

This is great news for a lot of us who suffer with bladder issues due to MS or other conditions.  To be approved to receive this treatment, you must have already tried to treat your bladder dysfunction with medication or behavioral treatment (bladder training) without success.

To perform this procedure, a local anesthetic will be given in a day-surgery setting.  Botox is then injected directly into the bladder muscles between 20-30 times in different locations. Relief of symptoms normally lasts between 6-10 months.

There are some side effects to consider, like problems emptying your bladder.  In about 4% of patients, the paralyzing effect of the Botox is too great and a catheter will be needed to empty the bladder for approximately 6 weeks until the effect lessens.  Other patients have reported dizziness, headache and fever but, these things are all kind of par-for-the-course with MS so, how would you be able to tell the difference I say?!

The good news is that there is another option out there for treating one of the most annoying MS symptoms.

The bad news is that your nearby organs may get jealous when they see how young your bladder looks...

Special Mention Goes To...

Today we're appreciating Sakar (human baby), Isis (kitty baby) and Reya (not a puppy but, acts like one).

Sakar is the 2 1/2 month-old son of my friend Amber and her husband Khaled. He is SO adorable and brings an overwhelming amount of joy to their lives everyday. He hasn't been here for very long but, I know they can't even imagine a time when he wasn't.

Isis is the kitten of Amber & Khaled and is growing up right alongside Sakar... Their two babies are super-cute together and definitely keep Mommy-Amber on her toes!  Thanks for bringing huge amounts of love and laughs you two.

Sakar wearing his sunglasses at night

1st Halloween costume

Sakar

Isis

Let's also say a huge thank you to Reya, the Blonde Lab of Karen & Warren.  She has helped her human parents through a very tough couple of years.  I met her on the Labour Day long weekend and I fell in love immediately; what a cutie!  She "helped" us play Bocce Ball, ferociously protected her yard from encroaching butterflies and allowed us the privilege of petting her.  ha ha

Reya: It's been a tough day

Reya watching out for evil butterflies and magpies

Besties Are The Best

I'm feeling really grateful today for my friends and I want to give them a shout-out to tell them how amazing they are.  I couldn't have made it through the past year without a group of very special people - they're family that are not actually related (except for one).

So, to Amy, Erin, Lindsay, Amber, Stephanie, Travis and my sister Cristy....THANK YOU so much for all of your help. 

Amy for being ready to drop a husband, two kids and a menagerie of pets to jump on a plane at a moments notice and for convincing me to start this blog.  To Erin for always being there to talk to and for bringing humour to every situation.  To Linds for always treating me like I'm healthy, whether I am or not.  To Amber for keeping my social life alive when I feel like hibernating.  To Stephanie for being my MS counsellor and support-system through all of the B.S.  To Travis for giving up time with my sister to drive me to the hospital, hold me up so I don't fall and being supportive always.  Last but certainly not least, to my sister Cristy, for moving in with me when I couldn't do much of anything.  For taking care of me, my home, my pets and my sanity.

No matter how much I want to be independent and not ask for help, I realize that I have an amazing support system and I do need them in sickness and in health.  So, thank you to all of my friends, listed and not listed; you're a wonderful group of people and I'm sending you all of my love and gratitude.

Hugs & Kisses, Ali. xoxo

* If you have anyone you want to shout-out, let me know and I'll post a thanks to them here for you *

Poetry Corner

Wow, can you believe it's been six months exactly since I was diagnosed with this %&*#@ disease called MS?!  It's certainly been a roller coaster ride of every conceivable emotion.  But, when I look back to six months ago, I can hardly believe how far I've come and how well I'm doing now.

I have always written poetry when the going gets tough; sometimes I wake up in the night with words in my head and I have to write them out or I can't fall asleep again.  I always have a journal in my bedside table...

I thought I'd share with you something I wrote while in the middle of that last relapse while dealing with my brand new diagnosis.  I'm sure you've all been there and can relate, whether you have MS or not.  We all struggle and stumble sometimes and maybe this can help someone out there wading through the muck right now.  It will get better, I promise.

There's a kitty in the window and a spirit by the bed
Passing through her messages Re: the living and the dead

Drugs in to still the heartache, drugs in to numb the pain
Drugs in to slow the monster punching holes into my brain

I wish I may, I wish I might just make it through another night
Without the dreaded crushing strain that I will never walk again

The Earth it keeps on spinning, the planets are aligned
I hope that I'll be happy soon one day before I die

It's coming like a freight train, It's going to mow me down
I've known it for the longest time
My birds have almost flown

My birds and yours can sit atop the highest wire fence
I've missed you so these many months
We'll be hours to just catch up

To wrap my arms around you and to gaze upon your face
The last time that I saw it was the last time I felt safe

So, there we go, deep thoughts by Jack Handy Alison.  What do you do to comfort yourself when you feel hopeless?  And don't say "red wine" Mom; that's universal!  ha ha

My Knees, They Are A'Shaking

Welcome back from the long weekend everyone!  I had a fantastic time on my Alberta-adventure...we encountered a flight delay and ended up meeting some really great people in the airport while waiting.  Have you ever spent the night drinking away a flight delay at the airport?  My credit card hurts!  ha ha

Anyway, I had such a great, care-free time that today, back to reality, I feel scared.  I didn't think of MS for a whole 24 hours.  I didn't feel like the "sick person" and I just spent the night being the old me.  The one without this ticking time bomb in her head.

Do you guys ever feel like this?  Am I normal or is this something I need to get some help with?

I don't like surprises (bad ones anyway) and I've always been a planner.  This is why MS is such a difficult disease for me because, in my experience to date, I wake up in a relapse.  It doesn't come on with any warning and I get no lead time.

This fantastic weekend made me realize just how much I fear the future and my next relapse.  I so desperately want to enjoy every moment and I don't want to be disabled with fear when I'm not disabled in body too.

Do you MSers out there have any advice?  How do you cope with the unknown, the cold fear and trepidation?  Advice please :)


Cowboy Country & Congrats

Happy Labour Day long weekend everyone!  It's a nice time for a bit of a break and a great time to get out of town.  I am on my way to Stirling, Alberta (near Lethbridge) visiting family friends and taking a breather.

I hope that you're doing something fun this weekend and, if you're headed back to school, enjoying one last summer hurrah before hitting the books.

This weekend is also special because my colleague and friend is getting married.  Yay! 

So, a HUGE congratulations & best wishes go out to Michelle and Gem - have a fantastic time on Sunday and enjoy your Italian honeymoon.  I can't wait to see the pictures in a few weeks...  Ciao!

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