Pre Liberberation

Ok, so here I sit pondering all the events of the past few months.  Before Christmas my 84 year old friend, Else, demanded I look into a new thing called CCSVI.  Sure I thought, here we go again with the media reporting a 'new' break through that we all probably heard of and dismissed years before.  But, she persevered, and I listened.  My world was rocked!  It was like all the puzzle pieces of my life were falling into place with a logical, understandable, explanation!  I called my friend in ON to tell him, he was as reluctant as I first was but, I begged him to trust me, and he did.....then his world was rocked!  The activist within me was awakened for the first time in years.  I joined Joan's list and gradually, many others and started to research all that I could find.  For the first time since I was diagnosed, I had real hope.

Now I have to explain something I've kept very close to my heart because I was afraid of jinxing myself.  I am going to Poland!  I was fortunate enough to be accepted by Dr. Kostecki who studied with Dr. Simka.  I can't even begin to explain how excited, and afraid I have been.  Not afraid of the procedure, or anything like that, just afraid that either the Volcano in Iceland, or some smaller detail would get in my way of going to Poland.  I made non refundable airline tickets and today I made my first payment to Dr. Kostecki's team.  I'm not as afraid of them saying they can't find anything.  I have a definite dx of MS, 3 brain and CNS MRI's (not to mention one of my knee but that's another issue).  I was just re reading the last one from almost 2 years ago that showed multiple lesions in the brain and spinal cord as they had expected.  I trust in Dr. Zamboni's research that almost all of us have definable stenosis.  

I decided to keep a record of my thoughts and how I'm doing off line before posting to a blog (there goes that superstition again), and post it just before I leave.  So, where to start.....

In the beginning

I guess first of all, once I had my dx when I was in my mid 30's, it was another time when pieces fell into place.  I had been sick all of my life that I can remember.  Ear and throat problems, neuropathic pain, leg problems, and of course mostly fatigue.  I remember in high school sitting on the edge of my bed in tears, wondering how I would manage to get dressed to go to school.  I would also get these head aches, and shooting pains behind my fingernails (still do) that feel like someone suddenly jammed a needle under my finger nail.  I would gasp and shake my hand for a few minutes.  My friends would then ask what was wrong.  I would say, "don't you hate when...." and describe the pain.  They would look at me a little sideways and quietly say, "ummmm oh ya", it's only after my dx I realized they were only humoring me.  I now see that they just assumed the 'crazy' part of me was showing itself.  I didn't know any better, I thought everyone experienced these things.

The Big DX

The day of my dx I remember every little detail, except for the date.  I think I forever put it out of my mind.  The Dr., an internist, was called out of the room 3 times during his delivery of the news to answer phone calls.  After he finally spit it out, my head was spinning and I wanted to ask questions.  The only person I had known with MS, and the reason I would participate in fund raising for years, was a wonderful man who had what they call 'galloping' MS and who died within only a few short years.  He left behind a wife and 2 children.  While I was stumbling to organize my thoughts and ask questions, the Doctor looked at me and said, "well you have enough to deal with for a while, come back in 2 weeks and I'll 'educate' you".  He really didn't know me well at all.  I walked all the way to the library in tears (amidst strange looks from the people I passed) and took out every single book or article I could find on MS.  I then took the bus home and found my community guide and called our local MS representative.  Deloris was wonderful, she must have spent a couple of hours on the phone reassuring me (fellow ms'er and volunteer).  She put together a package of information booklets and my husband went to pick them up.  I've always taken the attitude that it's better to know your enemy, and believe me MS is my enemy!

Twice now I've had someone ask me if I wouldn't be better off 'making friends' with MS.  HELL NO!!  I always replied, that the day I make friends with it, is the day I give up and give in.  Both of these people were not personally affected by MS, although one was a counsellor.  I'm sure they were doing their best to help in any way they thought would work, but nope, never ever will MS be my 'friend'.  

So, I went on to have 4 children.  I loved being pregnant.  My toes would go numb usually, but I was told it probably had to do with the baby pushing on a nerve, or hormones or something.  After each baby was born I crashed big time!  I thought I must be lazy and everyone felt the way I did after having a baby.  So, I pushed myself and pushed myself, to keep up to them and make sure their needs were met.  Don't get me wrong, I wouldn't have changed a thing, I loved being a mommy.  I was an active community volunteer, and dragged myself out of bed in the mornings to pack lunches and make a hot breakfast.  It was as if I was afraid to slow down because I may not get up again.  As I look back now, I believe having my children kept me going.

Once my youngest was in school, I went to University.  I loved the classes and as an adult student I had the confidence to insist on what I wanted to study and with which professor/teacher.  In the middle of a 4th year psych course in feminist psychology, I went blind in one eye.  I couldn't read, I tried, but the other eye became too blurry to continue on.  I allowed myself to quit and after 2 months things got better, then I went blind in the other eye.  This has happened to me 3 times over the course of the past 15 years.  Let me tell you....no one appreciates depth perception until they don't have it!!  I would reach out to set my cup of coffee on the counter only to have it crash to the floor.  

So How are my Symptoms Now?

Ever since my dx my two biggest problems were fatigue and the infamous 'MS Hug' or tight banding around the ribs.  For the past year my fatigue levels have risen enough that I'm finding it almost impossible to 'push' myself any more.  I do things in little spurts.  I have times where just getting out of bed to go to the bathroom during the day, is almost enough to push me into giving up.  I take Gabapenten for the 'hug' or I wouldn't be able to get out of bed at all.  We have 9 amazing grand babies (all 9 years old and under) with number 10 on his way in the fall.  We also have two beautiful step grand daughters 6 and 9 years old, so energy just isn't an option, it's a 'must have'.  I adore them, and I want to be a loving, involved, part of their lives.  

I still have problems with neuro pathic pain and not always in my fingers.  Sometimes it's in my foot, my face, or wherever else it decides to land.  I've had terrible problems with leg spasticity on and off.  Now it's almost always there, but there are times when I truly fear  I will never be able to straighten my leg again. 

My eyes have never fully recovered, and tire easily.  I am an only child and my parents put themselves through university starting when I was starting elementary school.  Spending time alone gave me a love for reading.  My mom would offer me books she was reading in University, and some I just picked up from where they left them in the house.  Then I discovered novels!  Well, I would go through a book per day quite often.  I would like to be able to read like I use to without my eyes blurring, hurting and my head aching.  

Depression was a serious issue the first many years, and also affected my children and husband.  There were so many days that I almost gave up, but thanks to the internet and my many MS friends, I managed to survive.  My husband suffered a high voltage electrocution 9 years ago when the mast of his sail boat hit a major power line ....twice!  He joked with the doctors that the first time stopped his heart and the second restarted it.  One doctor told him that's not a joke, that's probably what happened.  I remember the ambulance picking me up on the way into town.  I could hear his screams, hear the para medics, who were amazing, keep talking about how he was going into V fib again.  But, I couldn't touch him, I could only call out to him and beg him to hold on while the RCMP officer that drove the ambulance tried to reassure me (huge thanks to him by the way, he was such a source of strength for me).  They even let the kids into the trauma room they were so completely convinced he was about to die.  That was something we heard over and over for more than a week.  They just didn't know who they were dealing with!  My MS family/support group, became his as well.  We had the opportunity to meet some of our friends from all over the world, on more than one occasion.  Cards and parcels came from Australia, Puerto Rico, the US and Canada.  My gramma went into a comma while Guy was in intensive care, I never had the chance to say good bye, but at least the last words I said to her a few days before were, 'I love you'.  oh....did I mention stress?  He ended up with many of the problems I have such as chronic fatigue, neuropathic pain, depression, and the infamous 'cog fog'.  We're now the king and queen of sticky notes.  I have told him many times that he went to a lot of trouble to get MS.  

OK, this one maybe embarrassing to non ms'ers, but to us it's a way of life....the dreaded bladder.  Ever since I was a child it seemed I spent most of my time making sure I knew where the bathroom was and making sure I got there on time.  Now if I can't get to one without waiting a while, or without walking what seems like longest walk imaginable, I end up with bowel problems too.  So, I always carry extra clothes etc with me just in case.  More to carry, more to add to fatigue, but better than hiding in a public bathroom until someone comes looking for me.  

My gait is not the best, I tend to drag my right leg quite a bit especially if I've been up and about for a while.  If I'm up and around even a bit too much, I get a feeling and pain under my foot like someone put sharp pebbles in my shoes.   Balance....well you would never have known I used to dance Romanian dancing.  I miss that, I loved that part of my early years.  

Sleeping.....it seems I go through several nights of 4 to 6 hours of sleep, crash symptom wise then maybe get an 8 hour sleep for one night.  then the vicious cycle starts all over again.  Most of it is probably due to the constant pain in my hips, shoulders and either freezing or sometimes burning feeling in my feet.  Inclined bed therapy has helped with head aches quite a bit, but still not with sleeping.  Even the occasional time I take a sleeping pill, it's only one night of fitful sleep then it all begins again.  I've had so many nights where I wake up several times so sore, to look at the clock and actually become disappointed when I see that I've only slept for an hour or so.  

Hands...one of the things that has grieved me the most, is my hands went numb 5 years ago and never recovered.  In fact sometimes they get worse and pain is the only thing that comes through the numbness.  It can sometimes feel as though someone put tight elastic bands around my wrists and as if my fingers may explode.  Come to mention, sometimes my fingers actually do swell, as well as my feet.  I would get rings enlarged only to have them start to fall off a month later.  I was teaching myself to play classical guitar before my hands went numb, now I just look at the case and dream I could open it up and relearn what I've lost.  I also did pottery for a few years, even own my own wheel and kiln.  I went to a high realism graphite drawing course, and discovered I really could draw!  Well I used to.  Now I hardly recognize my signature.

Hearing.....I've had tinnitus several times.  I remember one night being so annoyed and woke my husband up demanding he go over to the neighbor's and tell him he has to shut his diesel truck off!  he would swear he couldn't hear anything, then finally I realized that even if I plugged my ears I could hear it.  Now, this past week, it seems I have lost most of the hearing in my left ear, and partly in my right ear.  It feels like it's plugged, but I doubt it's infected, there is no pain, just a muffled, plugged feeling.  For someone who loves music, this is really getting to me.

Oh yes, one more thing....my neck.  for a few years now especially, my neck gets unbelievably stiff.  When I turn it from side to side as much as I am able, I hear what I call my 'rice crispie crunching' noise.  Guy will try to point something out while we are driving and I constantly have to remind him I can't look back that far or that quickly.

OK I had intended to do this video style, but I can't upload to youtube while we're up north, we have a limited wireless internet.  So, I hope that this rambling piece of prose will suffice in documenting before and after my trip to Poland.  There is a small part of me that is still worried that they won't find something they can try to fix, but I'm trying not to let those thoughts have power over me.  I'm trying to stay positive and just believe and remember to breathe!  

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