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Showing posts from 2010

The Scoop on Poop

...is a favourite book in my classroom library (I wonder why? LOL) and an appropriate title for my latest blog entry.  Because, yes people, I want to discuss that most unmentionable topic...the bowel movement, which I will refer to as 'poop', because, frankly,  bowel movement just sounds so clinical.

According to health professionals, a daily poop... or better yet, two poops per day, is necessary for optimal health.  Although I don't go around asking people if they poop daily, (poop being considered a taboo topic of conversation among people who aren't your closest confidante...and let's face it, even then, we're not comfortable broaching the subject) I have managed to glean enough data to conclude that, frankly, most of the general population is "full of sh*t"... literally.  If you manage to have the recommended two poops/day, please contact me and let me know how you do it.  In fact, you might want to consider writing a "how-to book" and s…

All I Want for Christmas is My Two Good Feet

Well, it has been quite some time since my last blog entry.  I've been working on and off on a different entry and debating whether I should post it or not due to the nature of the topic :) I've decided that I will post it...eventually. 

In the meantime, I thought it was high time I got everyone up to speed with what's been going on with me, post-angio.  Actually, not much! :(  I would have to say that there have been no further improvements noted.  In fact, I would say that the spasticity in my legs and numbness in my feet are slightly worse...at least some days it seems that way?  It's really quite frustrating because there are times during the day where my legs feel better and then a few hours later, they're stiffer again??  I'm trying to pinpoint if its something I'm ingesting or doing, but so far the only thing that could possibly be a factor is the green tea I'm drinking?? Could caffeine be a trigger??

I'm hoping it's not the green tea bec…

Newsworthy

Just wanted to add this link to an article in my local paper.  I was interviewed by a reporter about my experience with the Liberation treatment and my views on the lack of action on the part of the Canadian government.  I was quite pleased with the article, but I'm not happy with the photo! :P  http://www.chilliwacktimes.com/health/Desperate+Hope/3693726/story.html

Balancing Act

Well, it's been 2 weeks since my liberation procedure and I don't feel that much different, although I am noticing some subtle changes, especially in my balance.  What's weird about my balance is that I seem to be more inclined to be off-balance than before?? but I also seem to be better able to balance myself when I try.  I know, it sounds a bit confusing...I'll try to explain...

When I am walking around the house, I seem to be more off balance.  Now... is that because I am walking more quickly, or because I seem to be taking longer, smoother strides than before and this somehow tests my balance more??  At any rate, I seem to be catching myself a bit more often.   The strange thing is, that when I do catch myself losing my balance, if I try, I can hold the balance better!?  For example...I was turning from the sink in the washroom to go out the door, and as I was turning, I noticed that I was starting to tilt a bit as I stepped forward.  As I teetered on one foot, I m…

Keeping the Faith

It has been exactly one week since I had my balloon angioplasty and I have been a bit reluctant to post this blog because it isn't full of all the wondrous improvements I'd like to report.  But since I'm doing this as an accounting of everything (good and bad) .......

I'm afraid I may have done something that I shouldn't have.  On Sunday I took a gondola to the top of the Zugspitze (tallest mountain in Germany at 2622m).  I knew this was not a good idea as soon as I felt the pressure in my ears increase as we ascended the peak.  I didn't feel too bad while we were walking around on the top of the mountain, but as we were preparing to take another gondola ride down, the left side of my neck started to feel funny and I was having some difficulty breathing.   This scared me!  What if the change in pressure caused my newly opened vein to close up again???  Needless to say I was not a happy camper the rest of the day....actually I have worried about it ever since! 

Post Liberation Day 2 and 3

Day 2

We are leaving today for Garmisch-Partenkirchen.  I don't feel any different than I did yesterday, but was surprised that the 3 glasses of red wine I drank last night did not have my legs doing their 'spasm dance', which is what usually happens when I consume something with sugar in it...bonus!

Walking the 500m or so from the hotel to the train station was MUCH, MUCH  easier today then it was when we arrived...and I walked it without feeling like I needed to hold onto Brad's arm.  We had 2 1/2 hours to spare, so we decided to walk around the station for 1/2 hour  before we stopped to have lunch.  I wanted to make sure that the track the train was arriving on was the same, so we watched the big timetable board for about an hour!!....standing, until our train popped up.  By this time, I'm beginning to think this is not placebo effect OR my iron will that I am able to be this mobile without feeling tired in the legs?  Brad also comments that I seem to be walking…

Post Liberation Day 1

My apologies that my posts have not appeared in a timely manner...finding wireless (or wired) internet has not been easy!

It's now the first day since my procedure.  The headache I had from the angioplasty subsided a few hours after the procedure, but the base of my skull/top of my neck is a bit sore.  I really don't feel any different although Brad says that my hands and legs don't feel like they are stuffed with cotton balls.  Apparently, I felt a bit like a mannequin?...who knew!?!

I did attempt to do the "walk a straight line" test and I thought I was able to do it a bit better...not as jerky, but still losing my balance.

Today, we are planning to use the tram to see as much of Frankfurt as we can.  An all day pass for two cost 9.50 euros.  We decided to revisit the "Altstadt" which is the old part of town...typical Tudor style buildings surrounding a large cobblestoned plaza with a number of old churches scattered about.  Although my legs were as…

Liberation Day

It's 8:15 am and I am trying to calm the butterflies that threaten to overtake my stomache.  My procedure was scheduled for 8:00 am and I really need to pee, but I'm afraid that the nurse will call me while I'm in the toilette, so I try not to think about my bladder OR the butterflies.

Aside from having my wisdom teeth removed (which required a hospital visit) I have never been on the receiving end of surgery, so had no idea what to expect.  I had read that Dr. Vogl didn't use anesthetic..."but that's a little  masochistic, isn't it?" I ask Brad, who tries to calm me down by saying that the scalpel he probably uses is so sharp I would hardly even feel it and besides...the incision is probably just a cm or two long. "So it probably feels like getting a paper cut???" I ask. "Yeah...a paper cut".  Yeah...right!?  I'm thinking he's just trying to keep me from freaking out, but I don't have time to ponder the paper cut theor…

D Day...aka Diagnostic Day

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I have never been so happy to discover that there is something wrong with me!  I have CCSVI!! How did I get to this wondrous conclusion??  Here's what happened:

Sunday (yesterday) Brad and I took the train from Garmisch-Partenkirchen to Frankfurt.  We rode first class from Munich to Frankfurt in a compartment we had all to ourselves.  I think I am hooked on train travel...it's a very comfortable and relaxing way to get from city to city.
We arrived in Frankfurt in the afternoon and then proceeded to walk the approximately 500m to our hotel...which is 2 blocks from the Red Light District, but I didn't know that when I booked it.  I decided not to bring my 'transporter' because I didn't think I would be walking long distances but I was struggling by the time we got to the hotel (partially due to the fact that I had eaten trail mix (raisins have too much sugar, ergo bad for Monica) so spent the rest of the evening in a prone position on the bed.  I had an apple for…

Gastronomical Challenges

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For those of you who follow one of the MS diets:  Best Bet, Swank, Recovery diet, or any version of these, you will understand where today's blog is coming from.  For those of you who can basically eat what you want...I cannot repeat what I am thinking!

I have been following for the past 3 years, what many would consider, a restrictive diet.  Basically I do not eat any foods containing: gluten, dairy, eggs, corn or soy, limit my sugar intake to almost nil, and keep my saturated fat intake to under 15g/day.  Oh, and I try to eliminate yeast, which up until now, hasn't been that difficult, but as you will discover, is causing me some 'issues'.

And for the most part, I have been very good at staying 'on the wagon', but I would be lying if I said I never fell off...occasionally.  I have the occasional bite or sip of forbidden food...and I usually end up paying for it in the form of worsening symptoms the following day.

Okay...so here I am in Germany...and the south…

PreAssessment Physio Videos

My physiotherapist just emailed me the videos she took during my pre op assessment.  Here they are:




I didn't think I did too bad with the reaching, but apparently I stick my bum out way too much, and then bow my legs.  This is not how you're supposed to do it. LOL

Random Observations

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Well, we've been in Germany for almost a week (hard to believe) so I thought I would share some observations I have made about how things are done here. 

Handicap accessibility is severely lacking...at least in the area I am in...Bavaria.  The one time I used my 'transporter' I had to get out and park it to get into many of the stores and don't get me started on curbs!  Thankfully, I have not needed to use it since then, but they are a bit behind when it comes to accessibility.

Public washrooms are interesting...you have to pay to use them!  Anywhere from 50¢ to 70¢.  If you are a patron at a restaurant or cafe you don't have to pay but many of the mountain 'gäst hofs' expect you to pay...I say buy a beer and be done with it.  The toilets themselves are interesting.  The last one I used (n Austria along the Autobahn) disinfected the toilet seat at the push of a button (this piece comes from the back and then the seat rotates around so that the piece thingy …

I love to go a wandering...

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We went for a 'rund fahrt' yesterday, which in English means 'round trip'.  My first question was, "Are we going to be doing any walking?"  Yes.  My second question was, "How far?"  Oh...not too far.  "So, I won't need my transporter?..." No, its not too far.  So I leave the transporter behind and off we go.  This is a pic of a nature park in the Karwendel Mountain range which borders Austria and Germany.  This very nice, fairly level path winds up to some, what look like in the distance, very small buildings.  and I'm thinking to myself..."this is a lot farther than I am usually used to walking...like about two or three times as far".  My mother thinks so too and we jokingly comment that Peter, my brother, can piggy back me if I get too tired.  But I'm game, thinking if I have to limp and struggle some of the way I can do it...and yeah, Pete can piggy back me if I really need too.  So off we go...and I'm feeling…

Leaving on a jet plane

“Well my bags are packed I’m ready to go...” and so the song goes— but unlike the song,I’m looking forward to getting on that plane becauseI love flying.I don’t fly often, which is probably why the novelty hasn’t worn off yet.For those of you who weren’t aware, I left today on what I like to think of as Part 2 of my road to liberation.
The butterflies began as we drove over the Alex Fraser Bridge and I caught the first glimpse of a plane landing.Finally, I was going to be the one leaving on a plane rather than the person saying, “Have a great trip!”
We went through security without a hitch and without a line up (imagine that?!) although the security person was rather grumpy LWould it have hurt him to smile?
And then fortune smiled down upon me in the persona of Tina, our check in clerk, who asked if she could give us a lift to the gate in her golf cart “thingy”.Actually, fortune smiled on me even before that, because, even though I was 300 g over the weight limit, I didn’t have to pay e…

Physio Pre-Op Assessment

Yesterday, I met with my Physiotherapist, who actually specializes in neurological disorders, to get a pre-op assessment of my mobility and balance.  It was a very enjoyable hour long appointment, as she was quite aware of CCSVI... having actually heard Dr. Zamboni speak at the American Association of Neurologists convention in Toronto!!!! How cool is that?!?! Anyways, the good news is I scored quite high on the assessment test (which is called something like 'Berg')...Wouldn't you know it...I forgot to ask for a copy of the report.  Oh well, no worries...will be seeing her again near the end of August for Post-Op.  OK, so I scored high but if you just look at the number (which was like 49/56) it doesn't really give you a clear picture of where I am at, because, although I was able to perform the tests fairly well, I lacked "fluidity". This lack of 'fluidity' stems from a severely decreased sense of propioception - basically, my feet and legs are so n…

The Strength of Community

When my good friend, Brooke, found out that i was going to Germany to pursue the Liberation procedure, she immediately insisted she was going to do a fundraiser for me.  I didn't encourage nor did I discourage her...I remained relatively neutral.  Because, the fact is, I felt a little weird that people would fundraise for me!?!  I mean, there are a lot of other people who are probably much more worthy (and needy) of fundraising than me.  I kept thinking, "What makes me more special than someone else?"...

I guess being a teacher in the same district for the past 15 years has its advantages. You get to know a lot of people.  And I have been fortunate to work with quite a few great people over my teaching career.  And if you know anything about the nature of teachers, you'll know we love to get together and have a good time.  which doesn't happen very often on a district wide basis. So a Burger and Beverage night, on a Friday, near the end of the school year turns o…

Prevention of Restenosis - the Plan

So, I just got back from my appointment with my Naturopath with a plan to prevent restenosis when (I'm being positive, so no 'ifs') I get liberated.  She did some research and found some interesting correlations.  I'm going to share them with you because I think they are interesting too.
I'm going to just copy what she had written for me :)

*There is an association between the presence of H.pylori infection in the stomach (this is the bacteria that causes ulcers), elevated serum homocysteine, and elevated CRP (some kind of protein) and an increased risk of restenosis.  She recommends that I be tested for the presence of all three and then will treat accordingly.  So the tests are:
-H.pylori Breath Test  - serum C-reactive protein (CRP)-serum homocysteine*Supplementing with vitamins that lower homocysteine levels (folic acid, B12, and B6) for 6 months after angioplasty or stenting significantly decreases the risk of restenosis at the 1 year mark.She recommends that b…

The "Natur"opath of Things

Ok, so I had my appointment with my Naturopath, who just came back from Mat Leave and had no idea what I was up to (as far as CCSVI goes).  She was extremely intrigued by the entire CCSVI theory and totally supports my decision to seek treatment.  My reason for seeing her now, is to establish some sort of wholistic support for my vascular system before I embark on my liberation treatment (fingers crossed) in August.  My reasoning, as I explained it to her, was that I wanted to make my veins as strong/flexible? as possible so as to possibly avoid any restenoses..."was this possible?", I asked her.  First, she was very impressed that I was being so proactive and secondly, she would get back to me, as she did not want to suggest anything right then until she researched this CCSVI more thoroughly.  Imagine that, a doctor, albeit a Naturopath, who wants to find out more about a 'novel' theory!

So I have an appointment next week to discuss what her ideas are.  We are also …

Expectations

I've been reading on various blogs and thinking a lot about expectations the last couple of days.  As a teacher, I instinctively aspire to having high expectations for myself and for my students.  I'm always encouraging students to: be the best they can be, stay positive, "you can do it"...you get the picture.  But with CCSVI and the liberation procedure, I'm trying to convince myself to have low expectations and I'm having a hell of a time with it!  Because the truth is, I want this to make me better!

So while I say to myself,"I'll be happy if it just stops the progression of my MS", there's a part of me...and its a big part... that really wants the fatigue to go away, the numbness to go away, the stiffness to go away, the bladder problems to disappear, etc., etc.  And all the while I'm thinking, "But, wait, this is dangerous thinking, Moni!...you're setting yourself up for a potential major disappointment and how are you going…

Chilliwack Progress - Painstaking path to potential cure

Being Proactive

Well, its another dreary day...welcome to the 'Wet'coast...and since I don't have to work today...or any other day, :(  I thought I would share my thoughts on things I am doing, and/or planning to do to support my recovery before and after my potential liberation.

There's a part of me that is saying "don't get ahead of yourself Moni...you don't even know if you have CCSVI" which is battling with the "need to be organized/plan ad nauseum part of me".  I adhere to the Boy Scouts' motto, "Be Prepared".  Be prepared for whatever the outcome from this journey throws at me...be it physical and/or emotional.

You see, I'm a bit of a 'control freak'.  I never realized I was until I had to share my classroom with another teacher because I couldn't work full time.  That was an eye-opener!  And having MS has really challenged the 'control freak' in me, because it's made me realize that no one is truly in control…

Pre-Op Symptoms

It's a very dreary Saturday...the perfect type of weather to sit in front of the computer with a nice cup of tea (Jasmine green tea...I think I'm addicted to it, btw) and blog.  Where is the sun, anyways?

I thought it was a good idea to list all the MS symptoms I have Pre-Op so I can compare them Post-Op, as other MS bloggers are doing.  Plus, it's always interesting to read about what other MS'ers have to deal with, and sympathize, because unless you have MS 'you really have no idea' what we deal with.  The last bit is in quotes because my husband is, frankly, sick of me saying it...but it's true!!

I actually find this a bit uncomfortable to do because I don't want to come across as being a 'wimp' listing all the things wrong with me...makes me feel kinda like a hypochondriac or something. LOL  Especially since I don't look like there's anything wrong with me...which, as many MSers know, is one of the most frustrating comments many of u…

Eenie, meenie, mynie, mo...

Poland, Bulgaria, Scotland, India, US...my list of potential places to get tested, and hopefully, treated for CCSVI.  Blatantly missing is Canada...but I'm not going to go there because I just get too outraged when I think about the fact that I was naive in thinking we had one of the better universal health care systems in the world...ha! Double ha!! 
So, I put my name on the waiting list for Poland (they're booking into 2012)hmmm... not so good.  I was considering Bulgaria, but something was preventing me from contacting them...?? Then the CCSVI UBC Facebook group posted a link to a clinic in Scotland...I'm thinking, I've always wanted to go to Scotland...oh, but you have to put down a deposit of £100...hmmmm, could be a scam, I'm thinking.  'Better check it out.'  Turns out I've heard of the director, and the clinic specializes in alternative/complementary MS therapies...so I go ahead and pay the £100 and haven't heard anything since. Hmmm...maybe …

In the beginning...

So this is my first attempt at blogging...'nuff said.  This blog is about what I've done and am doing to help myself...and to occasionally vent about issues related to MS.

Ok...so currently I am following a diet very similar to the Best Bet/Swank diet, taking supplements, using massage therapy, reflexology and homeopathy in an attempt to improve or at the very least stabilize my MS symptoms.   I think it has helped to some degree and up until this past winter, I was quite satisfied to continue on with 'the regime'.

Of course, that was before I learned about CCSVI and the renewed sense of hope that all MS'ers worldwide experienced.

So here I am at the beginning of my  CCSVI journey...the road to liberty.