I've Got A Pain In My...

Has anyone out there ever heard of "girdle band pain" or "the hug"?  I sure hadn't; girdles were those things your Grandma used to wear and hugs were just a nice show of affection.  Until, you guessed it, MS.  So many new and weird things to learn.  Anyway, I have this pain that starts in my mid back and wraps around my right torso to my breast bone in the front.  It feels like a huge hand with super-long nails digging into your skin and muscle and then to make matters worse, it itches and burns so deep that you can't touch it.  Really, extremely annoying and painful.  Before my doctor told me that this was indeed a symptom of MS, I thought that I had just gone overboard with the under wire miracle bras from Victoria's Secret or something; it is much worse when there is pressure on my ribs.  My GP prescribed me a drug called Lyrica and it usually works for a short amount of time or if the pain/itching/burning is not too severe.  But...I'm already taking Low Dose Naltrexone and Fluoxetine - I feel a bit too young to be starting this huge drug-regime and don't want to end up at the pharmacy requesting that they organize my prescription drug blister-packs!  Can anyone else relate? What do you do about it?  And before you say "just smoke pot", remember that I can't simply light up a fattie at my desk in the middle of the work day.  If you are allowed to do this at your job, let me know where you work and I'll forward you my resume.  

Flat Out

Thank you to everyone for their support of this blog and of me in general.  Last month when I got my diagnosis of MS, I felt so alone.  Now, after 5 days of posting and more than 2700 page views, I know that I am certainly not alone and that there are a ton of people out there facing similar problems.  So, issue of the day: I fell on my way into work this morning.  :)  Mind you, it was raining and I was walking faster than usual due to my new-found mobility; one of my colleagues asked me jokingly if I was practicing for a marathon.  Well, no, but when you can't walk properly for months and then you are almost in remission, you tend to speed along as fast as your legs will allow for a while!  Anyway, I want to talk about "canes" and not the candy kind.  When my mobility was down to almost nil, my co-worker brought me a wooden cane.  Well, that cane sat in my office for a week before I could bring myself to try it.  Just like not being able to wear heels anymore, using a cane made me feel angry and embarrassed, like something I really didn't want to give up had been stolen from me.  Fast-forward and now I'm all over using my cane; I'm not very good at it yet but, it sure does help.  It's been in my den for about 2 weeks now but, after my slip today, I may break that sucker out again.  For all of you mobility-challenged young people out there holding out on trying a walking aid, I am going to tell you to just do it.  Seriously.  Make your life a little easier.  I recommend the kind of cane that I bought; it's called a Hugo and it matches my favourite pair of flats (silver & black).  Check it out fellow MS-ers:
http://www.hugoanywhere.ca/ProductsSeg.asp?SegmentNameEn=Offset%20canes
I got the "carbon swirls" one but I'm thinking I kind of like "rainforest" too. ha ha  When I first started using it, all kinds of strangers asked me what was wrong; in elevators, in stores, on the street.  I was humiliated and deep in denial after my diagnosis and told people blatant lies like I had a broken leg, I fell skiing, I twisted my ankle...It was becoming a game in my head to try and think up the most outrageous story and see if I could get away with it.  I imagined myself blurting out "bear attack", "my parachute didn't open" or "killer bees" when encountering a curious stranger.  Now I'm further along in the 'stages of grief' and entrenched in the 'acceptance' stage so, I have no problem telling anyone, "I have Multiple Sclerosis".  While walking is still a struggle for me if I don't get enough rest or overdo it, I know that whenever I'm having trouble, I can just take out the Hugo and go wherever I used to.  Hey, if I ever do encounter a swarm of killer bees or an angry bear, at least I can hit them with the cane!
And for anyone who's interested, there is a young man named Jason Dasilva addressing the issue of MS and mobility in his film "When I Walk" (link below).  I can't wait to see it.
http://www.wheniwalk.com/
Thanks all, Love Ali. xoxo

Did We Break Up...Or Are We Just On A Break?

I really, really, really miss ... my high heels!  I have been addicted to heels since the first time I remember wearing them to my cousin's wedding.  A pair of little, burgundy pumps in suede that matched my dress; I felt so grown up...and so tall!  I was hooked for life.  When I was viewing my condo in the fall I wasn't quite sure until the agent said the following magic words: "and behind that door is another closet for shoes".  Well, enough said - I moved in December 1st.  And there they sit; pairs and pairs of beautiful heels all lined up with nowhere to go.  I have had to wear flats since November because obviously, when you can't feel your feet, you don't want to be any higher off the ground than necessary.  I have had all of my pants hemmed and now I am relegated to the outside walls of Nine West and have to skip the middle aisles where all of the shoes I want are.  It's like going to the grocery store and only being allowed to buy items from Dairy, Produce and Poultry.  That's actually a good comparison; heels to me are like the junk-food aisle.  Bad for your health, but SO wonderful!!!  I don't want to admit that MS may have taken something away from me that gives me so much pleasure.  I don't know why I torture myself by going online to zappos.com and looking at all of the new arrivals.  I guess I'm just wondering: will I be able to wear them again, or are we broken up for good?
 

Clarification

Hello all.  It has recently come to my attention that my post mentioning Herpes as a reference may have offended some. Well, my intention is certainly NOT to offend anyone, especially anyone suffering from a life-changing disease which I completely understand and have the utmost empathy for.  With this blog I would like to encourage an open culture of full disclosure so that everyone struggling alone with such huge hurdles can feel free to openly talk about whatever plagues them and causes them to struggle.  In this way, I think that we can all band together as a community (be it a little one) and support each other; no matter what you need help with, be it mental, physical, social, financial etc.  Bring it on people.  I say all of this because I wish that I had known 6 weeks ago just how many people battle with the issues I now realize are common.  Issues that caused me huge upset, trauma, loss of hope and depression when I thought I was unusual and everything was hidden and taboo just because it can be perceived as embarrassing - I didn't leave my house (or my pajamas) for 6 days a couple of weeks ago because of just this thing.  When I opened up about it and finally asked a fellow MS-er for help and advice, I found that I wasn't alone and certainly not unique.  Whew, what a relief.  So, don't be ashamed of your diseases people; lets face it, the post-30 body isn't what it used to be and we're all going to have something sooner or later so, I hope you know no offence was intended, just a small comparison between a communicable disease and one that's not.

So, on to a bit of a lighter topic.  GO CANUCKS!  Are you all watching this awesome game???!!!  Sorry Dad, I'm just temporarily switching my focus from your beloved Maple Leafs to Vancouver...  Thanks for listening everyone, Ali xoxo

Disease-etiquette (???)

Well, I am overwhelmed with the amount of response to this blog already so, thank you to all who replied privately and to those who left comments or just took time out to read it.  I went back to work today and it was wonderful to use my brain and think about something other than MS.

So, I have a question and maybe one of you will have some input for me.  A couple of days ago I was talking to my friends Amy and Erin separately about what to do when I meet a new guy I'm interested in.  Do I just come right out with the fact that I have this disease and don't know what my future holds?  Do I wait? What's the disease-etiquette?  After much discussion and banter, I received a lovely story about a couple in a similar situation from Amy that ended like a fairy tale and gave me hope.  Later on, after much discussion and banter, I received the following advice from Erin:  "Whatever dude, don't worry about it.  It's not like you have herpes or something!"  So, indeed, two very different and valid points of view.  Does anyone else have advice or experience on the subject?  :)  Ali.

Alright then...the history

Hi everyone, my name is Alison and I'm starting this blog on the recommendation of friends and family so, I hope you like it and I hope that in addition to helping me vent, it helps someone else someday.  Who knows?  Many of you already know this story but, for those of you wondering, I'll let you know what this is all about.  In 2005 I was in Whistler, BC helping out another hotel property because they were short-staffed and I was staying in a suite there for a couple of weeks.  My sister and friend came up to visit on a weekend and of course, we partook in a little drinking and partying.  I had noticed prior to this that my legs were a bit unstable and I could not walk well for long periods of time but, I kept it to myself and thought it was altitude-related or something like that.  Duh.  I had left my two little monsters (cats) at home in White Rock with my sister to watch and while in Whistler, Montie (big, hairy, grey monster #1) was in a fight with another cat and got a scratched lens on his eye requiring a vet visit and subsequent large vet bill.  This stressed me out a bit and with the stress came less and less function in my legs.  That crazy altitude-sickness! 'Cause being in Whistler is just like being in the Alps right?!  Duh again.  Anyway, so, I woke up one morning shortly after all of this with a kind of paralysis in my left side.  I thought I must have been bitten by a spider and was having an allergic reaction.  After getting ready clumsily and stumbling down the hallway like a drunk, I ended up at work at the Front Desk of the hotel and proceeded to get through the day by tripping around, dropping people's'credit cards out of my gimpy left hand and finishing it all up by bursting into tears in front of the Hotel Manager.  Thank goodness said Manager was a wonderful woman named Kim who steered me straight in the direction of the local medical clinic where I was promptly evaluated and sent back to Vancouver for testing.  Long story already long...I was referred to a neurologist who told me casually "you probably have MS" and sent me on my way to wait for a diagnostic MRI 9 months in the future.  Wonderful health care system we have here; thank god for private!  So, after begging money from Mom (thanks Mom!), I had my private MRI in hand and a diagnosis of...nothing.  No MS.  What?!  What the hell is wrong with me - I must be a crazy hypochondriac...with altitude-sickness...and a bad spider bite.  The neuro sent me off with a 'diagnosis' of Aura Migraines and the semi-paralysis-whateverness eventually went away within 4 stressful months.  Skip ahead nearly 6 years later with a few little episodes of spider-bite-numbness and altitude-sickness-while-at-sea-level falling incidents and clumsiness and the foot numbness begins.  When I found out that my beloved Grandma was ill and would be passing on soon, I immediately got a feeling of both of my feet falling asleep from the soles up.  This feeling persisted for 2 1/2 months through my frantic flight home to be at her bedside on my 34th birthday, her week-long stay in hospice, her funeral, my flight home, an apartment move and xmas.  When I returned back to BC after xmas, to top off a cherry year, I got the flu.  When the flu started going away, all s*it hit the fan.  I rapidly lost the ability to walk and was stumbling all over the place and falling into walls and into my poor colleague and boss (sorry Mark & Sheri-Lynn!).  I started using a cane and I lost bladder control (I have a few bladder control stories that are actually quite funny after the fact and maybe once I'm 100% over the embarrassment I'll post them and you can laugh in a way that makes you feel bad about yourself but are funny nonetheless), I lost the ability to drive, my thoughts became muddled and my short-term memory faded and I got REALLY exhausted and I had this burning, clawing, itching pain through the right side of my torso.  You know, thank god for denial because honestly, during all of this I thought I had a pinched nerve causing all the trouble and began seeing a chiropractor.  I mean, I already knew I didn't have MS so, what else could it be?  Not Aura Migraines!  In hindsight, the visits to the chiropractor were not a total waste because the doctor was really cute and where else can you legally pay a cute doctor to lay their whole body on top of you and "adjust" you.  Nice interlude in a month filled with uncertainty and lack of mobility!  So, moving on...I had to have a prescription renewed and made an appointment with my GP - my wonderful Scottish doctor who has been a testament to how doctors should be throughout this whole ordeal.  As soon as he saw me "walking" in, he was alarmed and fired off a batch of questions while I answered, all the while insisting it was a pinched nerve and I'd be fine.  He begged to differ, informed me that he was nearly 100% certain MS had come back for me and scheduled me for a neurological exam and an MRI again.  Now, I had been working steadily for the past 6 years and could now afford my own private MRI without making an appointment at the Bank of Mom (great interest rates!) and got my diagnosis of MS 2 days later.  SO, I GUESS I HAVE MS NOW.  It's now been 6 weeks and 3 days since I found out and a ton has happened during that time.  I have been off work, been on a 3-day IV course of Prednisone, lost all function and mobility, got most of it back and am now returning to work tomorrow.  I've started an oral medication called Low Dose Naltrexone and it's helping me.  I've been to rock-ass bottom and am climbing my way up again slowly.  I have been diagnosed with Relapsing-Remitting MS (RRMS) for now, I'm on my way to a remission and am scheduled for another MRI in 9 months.  So, I don't know how much I'll be updating this site but, thanks to all who suggested that I start it because just writing out the above has lifted a little bit off of my shoulders.  Maybe future posts can include information on the magical, nauseous world of Prednisone, perhaps we can discuss the difference in incontinence products or we can talk dosage levels.  I mean, what else is there to worry about in your mid-thirties?! ha ha   Talk soon, Love Ali. xoxo