Monday, December 27, 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 selling it online (cause no one would dare buy the book at a store).  I would buy it :P

I envy my dog.  Through no effort on his part, he manages to routinely have two poops per day that coincide with either his breakfast or dinner meal...like clockwork.  Oh, to be so lucky.   

I have tried, over the past year and a half, to have a daily poop consistently.  If you were a betting man, I'd tell you NOT to bet on me. Because not only have I not been able to do that, I have been plagued by the "C" word...yes, CONSTIPATION...the bane of my existence, and which causes me far too much, well...gas, and is threatening to take over my life.

I have even formulated a theory that some of my MS symptoms (spasticity and numbness) are aggravated, perhaps even caused (?) by constipation.  How did I come by this conclusion? Continue reading and I will explain.

Through coincidental observations, I have noticed that if I don't have a good poop in the morning a few things happen:
  1. my urinary urgency increases (I wonder if its due to pressure against the bladder?)
  2. by about noon, my legs get stiffer and my feet get a bit more numb (I notice this especially when I am at work)
  3. increased gasiness in the afternoon
  4. bloating and a general sense of discomfort
All of these happen like clockwork anytime the morning poop is missed. LOL  So, here's what I have been doing to ensure I have a good morning ;)
  1. eat 1/3 cup of ground flaxseed mucilage (that has been soaked overnight) with my creamy rice cereal every morning
  2. take digestive enzymes with each meal (this has been a HUGE factor...possibly even THE factor as I have just recently added this to my repertoire and it has made a world of difference!)
  3. take a probiotic 2-3x/day after meals
  4. take 250g magnesium citrate 2x/day 
  5. Magneium Phosphorica Schuessler Tissue Salt (1 tablet at least 3x/day)
  6. try to get some form of exercise every day (I take the dog for a 10 min. walk every day...it's not much, but every bit helps)
So, is it working?  Well, let's just say that, more often than not, I have a good morning and I think with a bit more time, I may actually be joining the "2x per day club". 

More importantly, is it helping with the spasticity and numbness?  Hmmm???...that's a bit of a crap shoot (no pun intended).  Because I'm still not consistent, I'm not consisternt with the spasticity either.

I'll have to keep monitoring this one. :) and if you would like to share any anecdotals...please do. :)

Tuesday, December 21, 2010

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 because it's supposed to be a natural iron chelator that can pass through the blood-brain barrier. www.ncbi.nlm.nih.gov/pubmed/16470637  I was drinking about 5 cups of tea a day, but my naturopath said I should cut it down to 3 cups, as that much caffeine could contribute to my spasticity.  Maybe I'll need to take pills instead?

So my feet have been bothering me lately.  It's gotten to the point that I only have about 3 or 4 pairs of shoes I really feel comfortable walking in.  This upsets me no end, because I have this really comfy pair of chocolate brown UGGS that would be perfect this time of year, but I can only wear them on my 'good' feet days because...well, they're a bit 'schleppy' to walk in at the best of times, and I certainly don't want to be tripping all over the place...I do that enough already! LOL

I was secretly hoping the procedure would improve the numbness so that I could wear heels...which made me feel a bit guilty because it's a rather vain wish to have.  I've decided heels may be a lost cause, so I've transferred my love of shoes to...purses! ...I was at Macy's the other day and oh, did they ever have some some great deals on purses! 

But I digress!  So my legs haven't been the best...but here's the thing...take out the legs not being up to snuff and I feel great!  Legs aside...I have a general sense of wellness?! Not sure if it's because I'm coming to terms with my MS symptoms or if the things I've been doing to help myself are just coming together to create this sense of wellness? Whatever the reason, I'm not going to dwell on the why's...I'm just going to enjoy the feeling and hope it continues.

And on that note...I'd like to wish everyone a very, merry Christmas and most of all, a Happy and Healthy New Year.

Wednesday, October 20, 2010

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

Tuesday, August 17, 2010

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 managed to hold myself upright for a few seconds before placing my other foot on the ground.  I have not been able to do that for the past year and a half.  I also noticed this morning, as I was putting on shorts, that I can stand on one foot fractionally longer than I previously could.

So, I thought to myself, "Hmmm...wonder if I should try the heel-to-toe test?".  Down to the hallway I go.  And very slowly and carefully I place one foot in front of the other.  I wobbled a bit, had to put my hand out to the wall once or twice, but instead of looking like I was on a tight rope, it now looked like I was walking along a balance beam.  Am I imagining it?...I don't think so. 

I don't understand how I am able to do that test better, as the numbness in my hands and feet has not changed and the numbness is a huge factor in my propioception or lack thereof.  I probably shouldn't over-analyze it...as I often do...and just accept that maybe, just maybe, I AM improving.  Wonder of wonders!

Tuesday, August 10, 2010

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! 

There have been no improvements since and I would say that I have backslid a bit.  Am I just imagining that because of the gondola ride??? All I know is that I will now always be wondering if I've done something to my veins, and I'm trying to come to terms with that. 

As much as I enjoy being in Germany, I am ready to come home, where I won't have to face the gastronomical challenges that have plagued me and I can go back to my familiar routine.  OK, I also really, really miss my dog, Tucker!

I truly hope that once I am back at home and can concentrate on doing everything I need to do to help myself heal, that I will see improvements in my symptoms.  I need to stay positive.

Friday, August 6, 2010

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 smoother...taking longer strides.  "You're not just saying that, right?", I ask.

Train arrives, we embark and get to relax in first class until we arrive in Munchen where we get a connecting train to Garmisch.  Now it gets interesting because the train arrives on Track 11 and we have 15 minutes to get to Track 28 and we are on the last car.  We have to 'hoof it' to make our connecting train.  I am aware of this and start to "hoof it".  Now, I have not been able to do this for the past year - year and a half...but to my utter delight, not only am I able to speed walk, I'm actually in front of Brad and he has to catch up to me.  Granted he's pulling the carry on, but I'm carrying my laptop bag.  Halfway there, I start slowing down as my legs begin to tire a bit and I don't want to stumble.  Brad passes me and now I have to try to keep up with him!...darn!! I was so hoping to lead the entire way!

Thoroughly impressed with my performance, I try to get my breathing back to normal, as that was probably the most cardio I have done in a few years! As we settle down for the final leg of our return trip, I think about what my family's reaction in Garmisch will be when they see me?  I had secretly hoped for a more dramatic improvement, but I think I look and move exactly as I did before, with maybe more energy.  Brad reassures me that he notices the different, but he's supposed to say those kinds of things, right?!

My brother picks us up at the station and asks how things went.  "OK", I sheepishly reply and quickly begin to head for the car.  "Hey, you're walking better" he says, as he follows me out the door.  Beaming (because this is what I needed to hear) I plant myself in the back seat, feeling much better about facing the family...because if Brad and Pete can see the difference in my walking, then others can too!

We arrive home to hugs and "how are you's" and I spend the next hour replaying everything that happened in Frankfurt.  I'm getting tired and so is Brad, so off to bed we go.

Day 3

Brad took the train in to Munich with Pete, Tony, and Cherie to visit the Deutsches Museum.  I am listening to my body (for a change) and have decided to take it easy today.  Plus, I've already seen the museum, so it's not like I'll be missing something. 

So, after 3 days here's where I am at as far as symptoms go:

  1. Fatigue - no change, except when it comes to leg fatigue...I seem to be able to walk farther before my legs start getting tired and weak
  2. Legs are still stiff and numb but maybe slightly less stiff?? Not sure
  3. Bladder - Not sure about this one because with travelling and being out and about, I haven't been drinking as much as I normally would...but last night, I did not have to get up once during the night!
  4. Numbness - the only change I have noticed is that my hands are not as stiff...is this due to slightly less numbness...not sure?? But, like Sandra, I am hoping to be able to touch type with all ten fingers> LOL
  5. Hands/Feet remain warm when they should be.  That's a change, as my hands were always on the cold side
  6. Had some spasms in my foot then first day, but nothing since, even when I have eaten questionable foods.  Will be monitoring this one closely.
  7. Balance - no real difference
I tried to do the heel to toe walk but still felt like I was on a tight rope...only difference was that the movement was not as jerky.

**I took my bandage off where the incision was made...couldn't find where the incision was!?!?...just a small dot of blood??  will get Brad to take a look **

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 stiff as they normally are, I was able to walk around the square for 1/2 hr. without too much difficult. (Normally, I am able to walk 500m before I feel my legs getting wobbly)  Brad also thought my walk was a lot smoother and when I thought about it, I realized my stride was a bit longer...it had been getting shorter over the past 6 months as I was not as confident about my walk.

After having lunch, we decided to walk the 3 blocks to the old Jewish cemetary.  I had wanted to visit Dachau because I have an interest in the Holocaust (having taught about it for the past 3 years as a unit for my gr 6/7 classes) and it didn't look like we would make it to Dachau, so this was a compromise.  No problems walking...I did hang on to Brad's arm as my balance is still off and the sidewalk was narrow.

We hopped on the tram to take us to the Frankfurt zoo, where we spent the rest of the afternoon.  Now normally I would be 'petering' out by now and my legs would have already been wobbling...but today, I was still pretty good.

I did have to sit down throughout the afternoon for short (5 min) breaks but I was quite pleased with the fact that I was able to see the entire park on foot...something that I did not think would be possible 2 days ago!  Is this placebo effect and am I willing myself to walk further than I should??

Wednesday, August 4, 2010

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 theory as the nurse is calling for "Frau Braun"...wait...that's me!!!  I get up and go to the nurse who leads me to the angioplasty change room...Brad has to wait in the waiting room.  Amazingly I am not anxious about the procedure...just worried that the nurse will come back and I will be buck naked, having taken too long to change into the dressing gown she's given me.  I shouldn't have worried, as my modesty was about to be put to the test!!

As I try to keep the back end of the gown from flapping loosely about, which would expose my very naked backside, I am escorted to a very narrow operating table, which I get up on, trying hard not to expose myself.  (Little did I know that this was a pointless effort on my part).  So I am prepped by a doctor from Libya who inserts an IV...ouch!, and by a nurse who preps my groin area...so much for the modesty!

Dr. Vogl comes in (it is now 8:45am), asks me how I am doing and begins.  No anesthetic people!! The actual incision wasn't bad...to start... but he presses against the vein and THAT is extremely uncomfortable...I don't want to say painful...but it's close.  The uncomfortable feeling in my groin area subsides and I try not to focus on what the Dr. is doing.  (I should mention there are three other doctors in the room, monitoring the machines and assisting Dr. Vogl) "Breathe, focus, think of horses" I command myself"  Horses aren't working, so I switch to picturing Julie Andrews in the alpine meadow singing the "Sound of Music".  Hey, it's one of my favourite musicals and...it works!

I know I should be looking at the monitors...you can watch as they fish the catheter through the veins to their destination...but that would probably accelerate my breathing and I'm trying to stay calm!  Dr. Vogl does my left side first.  How do I know that,  if I'm not looking at the monitor?...I hear a loud pop near my left ear...it's kind of like when you have water in your ear and then it quickly drains out, but 50x louder.  He ask me to hold my breath.........still holding.......can I breathe now??? Didn't bother to tell me to resume breathing which I do, of course.

I feel the catheter, as a pressure, in my chest.  And then he tells me to hold my breath again, and I feel a tremendous POP! accompanied by a very sharp pain that radiates from the base of the skull, all the way to the front of my skull, just above my right eye.  Holy Hannah, do I have one heck of a headache!!  Dr. Vogl must have sensed my discomfort, because he asks if I have pain?...Uh huh!

I should mention that after every pop, the other Drs. are calling out numbers (I'm thinking they have something to do with the blood flow).  Anyway, a second pop and then I feel as if the catheter is being withdrawn.  Dr. Vogl informs me that it is done and everything looks good!  I thank him and look at the clock...9:15am.  Just 30 minutes!

After being transferred to a hospital bed I am wheeled out of the Interventional Radiology ward to the Day Ward.  Brad comes upon me with a very concerned look on his face. (he later tells me that when he saw me in the hospital bed, he thought something went wrong, as he was expecting me to walk out of the ward) I proceed into the bowels of the hospital...really, all I see are water and electrical lines as I am being moved to god knows where!?

I end up in a totally different building.  Geez, I hope Brad can find me?! The nurses were very nice, informing me that I would be staying here until 12:15, and offering water, tea, biscuits or a sandwich.  I opt for water and tea and patiently wait for Brad to show up.  While I was waiting I was evaluating how I feel.  I don't feel any different...no sudden improvement in numbness or clarity...darn! I was kinda hoping I would feel something different...oh, well that wasn;t very realistic. 

It's been about an hour and Brad still hasn't shown up...I'm sure his lack of German isn't helping.  In the meantime another woman is being rolled into the room...I recognize (what I am guessing is) her husband from the waiting room this morning.  I was curious if she was here for CCSVI as they spoke English and she was in a wheelchair.   He asks me if I got the angioplasty and I say "yes".  Turns out they are from Vancouver Island!!  Best wishes for a successful procedure Diane!!  Hard to believe I travelled to German to meet someone from VI.

Brad finally shows up...there was a bit of a miscommunication. :)  He asks how I am feeling.  It's a loaded question, but I am honest and say good, but the same... because I really don't feel any different except that I think my right hand is a little less stiffer...but maybe I'm just imagining things?

At 12:15 the IV comes out and I can get dressed.  I am transported by wheelchair this time, again through the bowels of the hospital...at least I can see where I went...back to the IR ward where I await an MRI followup.   Brad notices I am still wiggling my right hand, grabs it and notices that it is very warm??  He grabs the left hand...warm as well.  Well, that's a change...my hands are usually cold!?

Over an hour later, and I am finally called in for the MRI...I can keep my clothes on this time because it will only take 5 minutes.  And then we wait in Dr. Vogl's office for at least another hour!  I'm getting tired...tired of waiting!  Eventually I get to see Dr. Vogl for a final consultation where he shows me the newly ballooned veins, tells me I need to take baby aspirin once a day for the next year, and then hands me a weekly log that he would like me to fill out (its part of his study).  He wishes me well and then sends me on my way.

I have been liberated!

Monday, August 2, 2010

D Day...aka Diagnostic Day

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 dinner because the restaurant in this hotel is only open for breakfast (the one meal that is included in the price) and I wasn't about to hobble the four (big) blocks to the Greek restaurant that Brad found...'just down the road'.

Did not sleep well because the hotel room faces the street and there is a pub kitty-corner from us that is open until 4am...oh joy.  With the window and door shut (we have a balcony) its okay, but it was muggy (and we discovered there is no A/C) so we opted for an open window and tried our best to sleep through the noise.  It's cloudy today so I'm sure it will be better...sleeping anyways!

The alarm went off at 7am but we snoozed until 7:40 and then got ready to go.  My appointment wasn't until noon but I wasn't sure how long it would take with the tram and how easy it would be to find the part of the university hospital I needed to get to, so I wanted to give us enough time.  It couldn't have been easier!  The location of our hotel is along the tram route to the hospital.  So it was just a matter of going back to the train station, buying a group day pass, and waiting for the tram.  The tram stops at the university hospital.  It was then just a matter of going through the front doors to the information counter, where we were directed to the Interventional Radiology clinic.  After being directed to Dr. Vogl's secretary, where we had to pay for the diagnostic tests (1200 Euros), we had an hour and a half to kill.  We walked to the restaurant which was in a different building and I had a salad...I wanted to eat now, because I had read that many people spent a good 7 hours at the hospital...waiting...

At 12:10 pm I get called by the nurse who tells Brad to wait in Dr. Vogl's waiting room (which is very large and has a huge flat screen TV, water, magazines, etc.)  while I'm escorted to a very small cubicle to change into the obligatory hospital gown in preparation for my MRV.

5 minutes later, I'm being placed in the MRI machine and am being poked not once (because the first time the vein was too small for a good 'flush'??) but twice.  It didn't exactly tickle but, once the needle was in it was ok.  I was given a panic button and my finger had one of those things that tracks your heart rate.  They then proceeded to fit a cage-like visor over my head which made me feel like Hannibal Lechter from the movie, Silence of the Lambs and I had to stifle a giggle because I'm sure I looked like Hannibal Lechter..."Do you want a nice Chianti with that?"

Aside from the noise, it was quite comfortable...I think I could have fallen asleep...if it wasn't for the noise!  I think the whole procedure from the cubicle to walking to the waiting room took about an hour.  My biggest concern through the whole entire process was whether I was going to have to pee while I was in the machine!  thankfully, I managed until AFTER the process.

Waited another 45 minutes to an hour before I was ushered in to Dr. Vogl's office where he proceeded to show me the images of my MRV which showed 3 stenoses - 1 on the right jugular and 2 on the left.  I asked him what % blockage I had and he said only 25% for all three.  There was a part of me that kind of hoped I had a higher % blocked (like 50% or more) but he thought the % probably correct for the amount of disability I presented???  He also asked me if I knew I had many lesions on my brain (I did) and he commented that he was a bit surprised I presented as well as I did...considering the amount of lesions.  However he isn't a neurologist so...   but it made me feel good, anyways! :)

I did not have a Doppler Ultrasound.  I asked why...and Dr. Vogel said, it was obvious I had stenoses so why bother with ultrasound?  which kind of makes sense.  I don't think he checked the Azygous vein and I forgot to ask him...??? I think I was just so happy to learn I had stenoses, however small!  At any rate, I am scheduled for balloon angioplasty tomorrow morning at 8am!!!!!...the journey continues...

Sunday, July 25, 2010

Gastronomical Challenges

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 southern part (Bavaria) to boot; where it seems that all the people do is sit, eat, and drink...hike up a few mountains, sit, eat, and drink...hike down a few mountains, sit, eat, and drink...well, you get the picture.  Hey, I can sit, eat, and drink with the best of them...as long as it's something I can eat and something I can drink.

And therein lies the challenge!  I knew before I left on this trip that  my willpower would be put to the test...so, being the proactive person that I believe myself to be, I packed half my suitcase full of the essentials:   2 packages of creamy rice cereal, 5 boxes of Sesame Rice snacks, a huge bag of almonds, agave syrup, 50 teabags of my jasmine green tea, and a large container of freshly ground flaxseed.  These, along with my vitamins and supplements, literally filled my 27" luggage case half full leaving barely enough space for my clothes and other essentials and probably accounting for three-quarters of the allotted 23kg weight limit.

Breakfast is the most challenging meal when I am away from home...hence the creamy rice, agave, and flaxseed.  But do you know how hard it is to sit at a table where your uncle has just brought back freshly baked (that morning) buns and breads that are sitting nestled warmly in the blue checkered basket, with that slight yeasty aroma wafting tantalizingly under your nose???? Or how about the fresh from-the-cow, creamy, no-skim-here milk that sits so deliciously in front of you???Or the creamy fresh butter that you know was probably also as fresh from the cow as it could be??? If I was a dog, I would have a pool of saliva in front of me and my mouth dripping with it as well! Oh, how I miss bread, but I have been stoic in my resolve not to succumb to the tempting aromas of the breakfast table.  Score one for me!

Lunch in Bavaria is usually like dinner in Canada.  This is the main meal and for the most part I have been able to eat much of what has been put on the table...except that with this meal comes the obligatory beverage of choice...beer...or some form of beer.  Most beer is made with wheat or barley, water, and malt or yeast.  So for the most part I can say no, because I automatically refuse anything that has wheat in it.  However, in this particular area of Germany, they are masters at brewing a special kind of beer made with hops.  And most breweries in Germany follow the rule of 1512,  which states that beer can only have hops, water, and yeast.  That's it!...How much more natural can you get!?!?! And so I am thinking that since I have never ingested hops, there's a good chance I'm able to eat it.  Well, the beer is called Münchener Hell (appropriate name, don't ya think?) and it is good.  The kind of good that could turn a water/tea drinking middle aged woman into a beer-swigging drunk overnight! I'm a little concerned about the amount of yeast that is in the beer, but I convince myself that "I probably don't really have a sensitivity to yeast, anyways" ...yeah, right.  Well, after three days of consuming more beer than I have probably consumed in 3...no, make that 13 years...I have come to the conclusion that perhaps I need to cut out the Munchener Hell for a while because it might be contributing to the hell my feet and legs are experiencing at this moment?!

But, then again, I did have that shot of Hazelnut Scnapps last night...and maybe I should have said no when they offered me "Sex on the Beach?  Then again, maybe it isn't even the beverages??  Because I did have 8 pieces of that lovely Rittersport milk chocolate bar just before bed time...oh, and I forgot about the apple streusel cake we had at that lovely cafe downtown...although I was good and didn't eat the streusel!  It couldn't have been the couple of large licks/bites I took of my brother's gelato?!...is there milk in gelato??? Hmmmm....score 1 for the food. :(

Dinner, which is lunch in Bavaria, is probably the second hardest meal to be 'good' with.  Typically it consists of bread (verboten), cheese (verboten), an assortment of cold cuts and sausages (potentially verboten) and sometimes, some sort of pickled vegetable (most likely NICHT verboten) and of course, beer (self verboten).  So I dutifully bring out my rice crackers and the cucumbers, which I had the foresight to buy at the market down the road...along with the sugar free Gummi bears and "natural" potato chips.  I eat the cold cuts and sausage because they are VERY tasty,  and aside from what I am sure will account for my entire daily allotment of saturated fat, are made with all natural ingredients.  I am currently declining the beverage of choice, and instead opt for mineral water.  Score 1 for me...I think?

I have never felt so challenged by food  as I am on this trip! And as I keep repeating my mantra over and over, "food is meant to sustain life...if it tastes good, its a bonus" I can't help but realize that my 5 boxes of rice crackers and bag of almonds are gone, which means tomorrow I'm on a hunt to find my 'sin-free' food.  Wish me luck!

Wednesday, July 21, 2010

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

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 can clean it)...quite fascinating really.  Some will do it automatically by sensor...I made the mistake of shifting my weight and all of a sudden the seat started to move..."what the hell???". I thought.  That was on the first day in Germany...I now know better...park yourself and don't get up until you are totally finished your business.  OK enough about toilets! LOL

Smoking!...blech...in Germany its not too bad, but in Austria, where we went at least, they are still allowed to smoke in restaurants...disgusting.  I don't know how we ever coped with it in Canada?? Antways, I though I would have to leave the restaurant when the patron behind me lit up, but I turned around to see who was smoking, and I must have had a disgusted look on my face because shortly after that, he wasn't smoking...thank gawd!

Stoplights.....turn yellow to let you know they are going to be turning green...not red!  Maybe they do it for turning red too, although I never see them do it...hmm?  Reminds me of car racing...I think the lights turn yellow before they turn green.  With all the Porsches, Mercedes, and BMW's here, I can see why!

Bicycles...I have never seen so many people who ride their bikes.  Old, young, crippled, business men, farmers, ladies wearing dresses...you name it, they're out on their bikes.  For fun, to go to work, to the market...it doesn't matter...it seems everyone rides a bike.  Either that or they walk.  It's actually nice to see so many people using alternative modes of transportation.  Don't get me wrong...there are still lots of cars on the road, which is why there are probably just as many people NOT in their cars.  I couldn't imagine what the traffic would be like if they all drove cars?....utter chaos most likely!

I was going to talk about beer, but that could take a long time. LOL  I'll just say that its cheap, its good, and you have to like a country that delivers it to your doorstep!

I will continue to add any other observations I make as the weeks go on.  My apologies that this is not really MS related...but its an interesting side note.  (besides, its my blog and I can write what I want!)

FYI  This is a view from the Partnach Alm (a cafe in the mountains) which is owned and operated by my cousin, Wilfrid.  The picture does not do it justice.

Sunday, July 18, 2010

I love to go a wandering...




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 pretty good...legs aren't too stiff, gait is pretty smooth.  Hey, I think I can do this!!  By the time we get to the houses which are of course much bigger close up, I'm thinking "I have GOT to sit down, and how in the hell am I going to make it back?!" 

It's lunch time, so we decide to stop and have a bite to eat at the restaurant there.  I actually found a few things on the menu I could eat and the food was tasty.  By the time we were ready to head back, I felt pretty good and actually found it NOT to be a struggle to make it back to the car (which I thought it might be).  I did snooze on the way back...but that could have been the beer I had for lunch!

I surprised myself that day because I did better than I thought I would.  Maybe I won't need to use the 'transporter' as much as I thought I would.? :)

Saturday, July 17, 2010

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 because  I 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 L  Would 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 extra...pheww!  Tina must have realized I had some sort of mobility issue, since one of my checked baggage items was a ‘transporter’ (I refuse to call it a wheelchair...yes, I have some issues over the fact that I even have to consider spending some time in one, but that’s a whole ‘nother story”).

Anyways, so off we go, bombing down towards Gate 71 and I’m thinking, “it’s a pretty long way to Gate 71...thank goodness I don’t have to walk there!”

Fortune kept smiling on me for the entire flight...I was served meals before anyone else (courtesy of my special meal request) and I would have to say my meals were slightly better...which irked my brother, who was flying with me...Brad not being able to come for two more weeks.  We got the seats nearest the exit doors AND the toilette, which meant more leg room and convenient access when nature called.  All in all it was a good flight despite the length (13 hours).  But being up for over 30 hours is not a good idea, so off to bed I must go and hope the jet lag doesn’t appear. As they say in Bavaria, “Tschüss”. (good-bye).

Tuesday, July 6, 2010

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 numb that they don't really know where they are in relation to things around them (like the ground), so I take small mechanical steps to do things like: turning around, stepping onto a riser, and even putting my feet together.  Spasticity doesn't help either.  So she videotaped me doing these tests to give a more accurate representation of where I am at. 

I also talked with her about Cortical Remapping, which I discovered thanks to our intrepid blogger, Ginger!  I have been stimulating the bottoms of my feet and toes ( the end of a tweezer works great)  and trying for at least 4x/day...6x is better, but trying to fit them in is near impossible...unless people (in the mall, doctors office,etc.) are willing to see me take off my shoes and socks and start playing with my feet. LOL  I've been doing it for about a week and a half but haven't really noticed any changes...but maybe I NEED to do it 6x/day???  I guess I will just have to take tweezers with me wherever I go.  Luckily, I'm getting a pedicure today, so at least my feet will be pretty when I whip them out in the mall!   My physio has a particular interest in stimulating nerves...although she focuses on using electrical devices (there is one for foot drop, which she says works quite well) but she told me the Liberation procedure was the way to go, in my case.  And if (God forbid) I don't have CCSVI, at least I know I can work with her on improving my neural pathways.

I really feel like I'm getting all my ducks in a row.  I can't help but feel positive that everything I am doing will have a good outcome.  But only time will tell.

For those of you who are in the Abbotsford, BC area, if you want/need to see a Physiotherapist go to Abilities Neurological Rehabilitation and ask for Heather :)

Sunday, June 27, 2010

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 out to be a good way to raise some money AND get together!

I discovered something that night...the teaching community is an amazing, generous, caring group. I think I already kind of knew that, but just the same, I was humbled by that generosity and caring. And I thought to myself, "I guess I am special enough to have a fundraiser".  It's a wonderful feeling to know that so many people care about you.

I love being a teacher and I love working with so many great people.  And I am truly blessed to have such caring friends who would go out of their way to do something like this for me. I love you guys!

Thursday, June 17, 2010

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 beginning 5 days after the procedure, until at least 6 months after, I take AOR Promethyl which is a supplement that contains all 3 homocysteines mentioned.

*Bioflavonoids improve microvascular blood flow and clinical symptoms of chronic venous insufficiency (pain, tired legs, night cramps, restless legs)  in up to 73% of patients Note: this is for leg veins but the symptoms are interesting as many MS'ers can relate to them...at least I can
She recommends beginning now, take 3000mg per day of bioflavonoids until 10 days prior to the procedure (they have a blood thinning effect) and then resume 5 days after the procedure at a maintenance dose of 1000-2000mg per day
She also recommends discontinuing all vitamins 10 days prior to testing and angioplasty and then to resume them 5 days after procedure.

So there you have it...I'm going in to see my GP next week to first, tell her what I'm planning to do (ie. Liberation procedure) and to request the necessary blood work.  It will be interesting to see what her reaction will be...I'm hoping for interested or intrigued but I'm expecting skeptical and cautious with the possibility of denial or refusal.  In which case, I have to go to Plan B which requires some major begging from a friend-of-a-friend, who is a Doctor, to request the lab work.  I'm hoping I won't have to go that route as I don't like asking for favors.

Thursday, June 10, 2010

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 going to look at hair analysis to see how much iron I have in my body, as I would like to address this after I get back from Germany.  She also thinks it would be a good idea to get complete blood work up (ie. check vit/mineral levels, especially Vit D and B12.)

On a side note, she was surprised at how much worse my gait was since the last time she saw me (which was a year ago).  Another reason for going ahead with treatment!

Friday, June 4, 2010

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 to deal with that?!"

I was thinking about that last night, as I was trying to sleep (with not much luck...have to stop drinking that green tea in the evenings).  The power of positive thinking...people hear that phrase all the time, but what does it really mean?  I've been reading a bit about quantum physics (I know, sounds impressive, doesn't it? LOL) and how it can relate to spirituality.  I read a book by Greg Bradden, titled, The Divine Matrix.  In it, he writes about how our thoughts and intentions can influence the world around us.  It was a very interesting read.  And one that made me think that I had better keep thinking positive, and imagine myself getting better...just in case my thoughts and intentions DO influence the world around me!

As far as the, "how I am going to deal with a major disappointment"thinking goes...I'm going to rationalize that away, by saying that "it takes time for the body to heal and everyone heals differently; just as everyone's MS is different. So, how can I be disappointed right away if it doesn't seem to have worked?...it's just my body adjusting and healing".

Of course, all this debate is pretty much mute if I don't even have CCSVI.  In which case, my rationale will be:  I still have MS and I'm still waiting for a cure (I know, its lame,  but its all I could come up with at the moment.)

Monday, May 31, 2010

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 of anything.  I don't control when my MS decides to flare up, I don't control how I'm going to be feeling when I get up in the morning...that's a crap shoot.  So what does a 'control freak' do to deal with this sense of being out of control?...I control the things I can!

This means I follow a strict regimen:  diet, supplements, massage therapy, reflexology, regular visits with my naturopath (B12 injections), exercise (hmmm...not so strict on this one), plenty of rest.  Until the whole CCSVI theory hit the web, most of my focus has been on supporting the nervous system and alleviating inflammation, as per the immunological theory.  The CCSVI theory now has me rethinking how I approach my MS as far as supplements and complementary therapies go.

So here's what I'm thinking/doing:

  1. Talk with Naturopath about stopping B12 injections, as I don't think its helping as much as it did initially (was for nerves and fatigue) (I'm taking a Vit. B complex as well)  Also ask about supporting vein walls/vascular system, right now, in preparation for potential treatment.  My reflexologist suggested this, which makes sense to me...if there is a chance that I could restenose, why not try to make the vein walls as sturdy as possible to help prevent this?  I don't know if you can do that (I know Vit. D helps) but I also have heard Selenium mentioned. 
  2. Review the supplements I am taking and see if I need to add or delete any, with an eye towards supporting veins (is this part of the circulatory or the cardiovascular system, or both??) Might be a good idea to find out for sure :)  
  3. I'm forcing myself to take the dog for a walk EVERY day, regardless of how I am feeling.  Currently this means around the block (500m). I think I can manage that. LOL
  4. Look into chelation!  I want to spend some time on this one because I see a lot of potential with this...but only AFTER liberation.  Here's why:  I read a research paper on a study that looked at a condition that caused too much iron deposition in the brain (sound familiar?!) but it wasn't MS.  Anyways, they wanted to see if oral chelation would help alleviate the symptoms (mobility, spasticity) and guess what...they did.  So, apply this to what we know about CCSVI and MS.  Most MS patients have too much iron in their brain which (i think) causes our body to attack the toxins created by the iron.  Logically then, it would make sense to get rid of the excess iron in the brain.  However, it doesn't make any sense to do it before your veins are flowing freely because you'd still be getting reflux back into the brain (according to the theory) and therefore more iron.  So you should wait until the veins are draining properly.  Now, I've done chelation and my body reacted quite strongly to it (it felt like I was having a relapse) which can happen.  So my plan is, and this is all contingent on my having the procedure, to wait about six months after I've been liberated (giving my body time to adjust) and then do the chelation...unless my naturopath suggests otherwise.:)
  5. Continue with massage therapy and reflexology, but think about adding acupuncture.  When I first started having symptoms (numbness in fingers) I actually went to see a doctor of Chinese medicine who performed acupuncture on me.  The interesting thing about this experience is that, after 3 sessions, she told me that it would be a waste of my money and time to continue coming to see her because the problem was in my brain and she couldn't 'fix' that.  Hmmmm....???  So I'm wondering, if you know it might be a circulatory/vascular issue, if acupuncture would help that?  
  6. And lastly, but certainly not least, continue with my diet.  I've been on this diet for almost 2 years now and I'm at a point where I'm actually afraid to go off it, for fear that I will feel worse, that the restless leg syndrome will come back, and...gasp...that I'll gain the weight back that I lost!
So, there's my action plan for now.  The 'control freak' inside of me is happy.

Saturday, May 29, 2010

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 us get..."but you look so healthy" is one of my favourites...yeah, well, looks can be deceiving!

OK, so on the EDSS scale my neuro put me at 4, (I think)..I would have rated myself a bit lower (like a 3) but I'm only basing it mostly on mobility and I know the neuros look at a number of other factors.

So, the symptoms (which I've put in order of how much of a pain in the butt they are for me):
  1. FATIGUE - varies day to day, hour to hour but it really restricts what I'm able to accomplish and it's responsible for my having to completely go off work for the rest of the school year (I'm a teacher) which was one of the hardest things I've had to do because I LOVE teaching
  2. LEGS - this encompasses a couple of symptoms that I experience elsewhere on my body but numbness and stiffness in my legs has restricted how far and where I am able to walk.  I now can walk about 1/2 km (around the block) before my right leg starts gimping on me and I feel like if you were to tug on me gently, I would keel over.  Plus I have to concentrate very hard on walking straight...forget about looking around, that would send me off balance! To put this in perspective, before MS I used to run 5km every day, or almost every day, 2 years after being diagnosed I was able to walk 5km on a regular basis, and now (7 yrs later) I'm lucky if I can make 500m.  and of course I have to rest for about an hour after.  Yeah, this one sucks!
  3. BLADDER - I used to have a steel bladder...honestly, I could hold it all day, no problem. Let's just say that when I have to go...I have to go NOW!  You know its pretty sad when you can swap pee stories with your 82 yr old father...we both know all the rest stops along the Coquihalla/Okanagan connector!  And yes, I have to get up in the middle of the night...but usually only once or twice on a good night.
  4. NUMBNESS - I already mentioned the legs but I generally have numbness/altered sensations over a good portion of my body.  If you drew a straight line across my body, I would have numbness from the chest/upper arms down...it's actually kind of weird.  And the further down the extremities you go, the more numb I get, so that my hands and feet are the worst.  I think the numbness in my feet really affect my balance, which of course affects how I walk.  Driving was a little weird because of the altered sensation but my brain seems to have adjusted to the difference.  I used to be able to touch type 55WPM but since I can't feel where my fingers are, I've resorted to the two finger typing method.  Sometimes my handwriting is a little off because my hands are numb and stiff (?).  I'm waiting for the day someone looks at my signature on the credit card slip and questions it (okay, I don't really think my scrawl is that bad...but I have thought that)  I like the PIN thing...no signature required.
  5. MEMORY - I have to laugh at this one because I'm not sure how much is MS and how much is aging!  But this one drives my husband crazy because apparently I don't remember things I've said or he's said to me.  Hmmmm...maybe that's NOT MS.  I do find I have to write things down...but don't most of the over 40 crowd??? LOL
  6. COGNITION - I don't have the brain fog that many MS'ers complain about but I do know that I have trouble sometimes finding the right word or mixing up words.  This can be quite funny or frustrating...especially when you're teaching a concept and what comes out of your mouth makes no sense at all except you don't realize that's what's happened until you look at the puzzled/blank faces of your students, or better yet, your über-achiever in the class points out that you've said something nonsensical..oh, yeah...that's priceless.
  7. COLD HANDS/FEET - this one should have been further up on the list, like #5 but I've always had cold hands and feet and just deal with it.  The only difference now is that, especially at night, it's very difficult to get my feet warm...I typically wear socks to bed.  Now, having said that,  I have been experiencing HOT hands and feet???? go figure.  Although I did read in a post that it may be menopause??(great)
  8. TINNITUS - This is an interesting one because I've had tinnitus at least 8 years before I was diagnosed with MS and never connected it with MS until I started reading that other MS'ers suffered from it.  Which of course begs the question: "was this the first indication I had MS?"     I will say that when I am not feeling well, the ringing in my ears becomes a roar!
  9. PAIN - I sometimes get stabbing pains particularly in my hips but they don't last very long.  Not sure if this is MS or age related, but I thought I would add it here.  I occasionally do get unexplained muscle pains at night...mostly in my legs.
  10. RESTLESS LEG - I used to get restless leg almost daily, usually in the evening, but since I went on the pseudo best bet diet I have not had this issue.  I do get it if I've eaten something I shouldn't and then I think "serves me right". :)
Well, I think that about covers it.  It'll be interesting to look at these symptoms post-op and beyond to see which ones improve.  I'm looking forward to being able to say there are changes for the positive.  Only time will tell.

Friday, May 28, 2010

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 it was a scam???  India is too expensive, and the US is still an option, but I'm sure everyone and their dog is trying to get in to see the few doctors who are performing the procedure, and anyways they probably charge an arm and a leg.  What to do, what to do???

And while all this is going on, I'm thinking about the two doctors in Germany whose names appeared on a list of doctors performing testing and/or treatment.  Although I haven't seen their names mentioned in any of the CCSVI facebook groups, the thought pops in my head..."I'll be in Germany this summer...I wonder if..." so, I acted on the thought and emailed the first doctor, whose email came back undeliverable. This is not a good sign. I email the second doctor who emails me back and writes:
thansk
 we can offer you a date in june
we start always first with MR venograms and doppler and then evaluate
all and perform also if necessary ballooning
That was the email...Holy cow!!
So who the heck was this Dr. Vogl?  Turns out he specializes in oncology radiology and he's the department head at the University hospital in Frankfurt.  He pioneered some experimental procedure for treating cancer...there's a Facebook page dedicated to him.  This is good...a radiologist who isn't afraid to try new things!  This is looking good.  Oh...and did I mention he performed this experimental treatment on Farrah Fawcett?!  Unfortunately, we all know how that went :(
At this point, I'm still unsure about what he's like with CCSVI...has he even done any????
To the TIMS forum I go...where I find mixed reactions to Dr. Vogl.  Most say he is very professional (that's good) but that he doesn't explain much and tends to be blunt.  In short, he is not warm and fuzzy!  Hello people!...he's German AND a specialist...this is normal! LOL  I feel safe in saying that because my entire family is German (hence the trip to Germany)  One comment that did worry me was that he does the testing and then declines the procedure???? But I think they meant declines to do it immediately after, as these people were asked to come back in six weeks.

 I made it very clear that my expectations are that I want to be tested and have treatment WHILE I am in Germany.  I think he got it, but his emails are very short and blunt...it's like trying to pull teeth to get information without feeling like you're pestering him with emails (because I have questions!!)

So I have an appointment for testing in Frankfurt on the 2nd of august at 12 noon and if I have CCSVI I will have the balloon angioplasty done the following day or the day after.

And I'm thinking, "Is this Fate...Divine Intervention...or what???"  I mean, I manage to find a surgeon who does the procedure, in Germany, and can do it while I'm there on vacation...and its cheaper than Poland or Scotland! Ha!  Double ha!!


 

Wednesday, May 26, 2010

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.