Posted by: michelezanini | August 28, 2012

As long as I am breathing

It may be that when we no longer know which way to go that we have come to our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings

– Wendell Berry –

And so it is that my REAL journey of living with MS begins.

I have been treated with disease modifying meds; daily injections of Copaxone for seven years.  Did they work? I can’t say for sure. What does  remain however are scars and indentations of repeated needling. Not to mention the fact that I am undeniably behindert (I prefer the kinder, more gentle German word for disabled which is funny considering the German language itself is quite harsh to the ear).

I have had two venoplasty procedures for CCSVI performed  by doctors in India and California. Both trips were memorable events for Steve and me with the bonus that the procedures provided some relief of symptoms. Whether they were symptoms of MS or CCSVI, it doesn’t matter. The fact is there was some relief for me, therefore some relief for those who love and support me.

I have sent my blood to a lab in Texas where they do in depth testing for Lyme disease. My test came back negative. My naturopath told me blood tests can produce false negatives when in fact there can be Lyme bacteria present. So I tried a more aggressive test where I took increasing doses of an herbal tincture. This mixture was to make me ill if I had Borrelia. Imagine taking something you hope will make you sick, it sounds wacko doesn’t it? Sadly enough my seemingly desperate measure did not make me sick so I must not have Borrelia bacteria in my system. Now I need to keep in mind there are hundreds of other bacteria, molds and toxins. Biotoxin illnesses are not well known, nor are they understood or treated by most mainstream general practitioners, this could take a while.

I am currently seeing a NUCCA chiropractor who has brought to my attention the imbalances in my cervical spine. After three months and two adjustments I have to admit I am feeling a slight reduction in overall body pain. Yes only a slight reduction but what a BIG BONUS! I feel more balanced and seem to have less muscle strain. These adjustments should improve the flow of my CSF (cerebrospinal fluid), hopefully my vascular and central nervous systems will benefit too.

I continue to learn and will be attending the National CCSVI meeting at the end of September. Although “The Liberation Treatment” remains controversial it has been a catalyst for more open dialogue and further research into the perplexing disease we call Multiple Sclerosis.  Things are happening and questions are being asked! Thanks to Dr. Zamboni’s theory, dentists, vascular surgeons, interventional radiologists  and chiropractors  are uniting to learn more about the amazing human body and how to keep us healthy. What an awesome concept hey?

Oddly, when I was younger I remember seeing others who were not well seeking treatments outside of mainstream medicine. I prejudged it all to be snake oil types of treatments. From my youthful, healthy perspective the people suffering seemed DESPERATE. Now with my such infinite wisdom and physical challenges as I begin my real journey with MS I realize it is neither sad nor desperate but a different pathway. A path I have ventured onto occasionally but never put my heart and soul into. It is the path that still provides hope.

I know I need to continue exercising for strength, to stretch, to eat well, to sleep, to laugh, to pray, to meditate, to trust, to surrender when necessary but there must be something more because I believe the greatest of all creations is the human body. It is a marvellous machine, both precise and efficient. The body is unequaled for complexity. God made me in the palm of His hand, I believe I have been given everything I need to keep this body healthy, so what changed and why, what am I missing? How can I help this body remember to how to function more efficiently?

Why don’t we know what causes MS? We know what makes it worse? I can and will visit many doctors asking “what and why” but ultimately the answer has to come from me, as my body is unique to me. I am determined to pursue treatment and therapy that will make me feel healthy, happy and as strong and stable as I can be.

If I ever thought my life was challenging (and I have); this part of my real journey with MS should prove to be more challenging than I dreamed possible! Presently though I am enjoying a gorgeous summer in Calgary, I am listening and learning, thinking and assessing, I am moving forward yet taking it easy like a singing stream.  The one thing I know for sure is I cannot and will not give up looking, as long as I am breathing I will be searching…

With love and gratitude,




  1. Michelle, you said the magic words “surrender and God” I am a friend of Christine Stevenson, and I have surrendered my body/my MS and am trusting God…a process i did 2 years ago….and now into my 13th year of Betaseron, all of a sudden my pain from the back of my neck down to my feet disappeared…..i am walking with a cane and foot brace (for drop foot) and feel alive….but i have all of a sudden become aware of my whole body….i no longer live in the burning searing spinal pain. THIS HUMIDITY HAS BEEN CHALLENGING BUT IT IS TO HEALTHY PEOPLE TOO…. May the Lord grant you the same healing…..The MS is still there, but it no longers rules my life. God does. and i deal with each day ONE DAY AT A TIME

  2. Hi Michele,

    I contacted you some time ago and you called me. We spoke briefly on the phone because I was in the middle of something. I believe I said I would call you back. I am sorry it has taken me this long. I would love to catch up with you.

    My number is 905-822-1603 or you can send me your number and I will call you.

    You have great courage and strength and the most important thing is your faith.

    I look forward to speaking with you whenever you have some time. Please let me know the best time to reach you.

    Kindest Regards, Liesa Cianchino

    Date: Tue, 28 Aug 2012 15:53:23 +0000 To:

  3. Thanks for the update Michele.

    My apologies for the delayed replies. I have been very busy of late.

    Take care of your spine, easy to take for granted, no fun at all when it is causing problems. It is so central to everything you do, except maybe blink.

    Good luck with all this stuff, I wish you well.


  4. It may be that when we no longer know which way to go that we have come to our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.
    – Wendell Berry –

    What a wonderful quote Michele! As always, I found your blog thought-provoking and inspiring. Whether you think so or not, I think you are an amazing example of balance…you live and enjoy each day of your life as best you can while still seeking to develop/grow/improve. Please keep on writing and take care!

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