Posted by: michelezanini | July 29, 2014

Mesenchymal Stem Cells

It has been a long time since I last wrote a blog. So much has happened in our daily life; over all things are pretty awesome. The MS slowly progresses though, presenting new decisions and challenges. Yes, I am taking the best care of myself and doing all the right things but I am weaker and admittedly somewhat concerned about my physical well-being. I know all the worrying in the world won’t change what the future holds so I/we (that is me and my greatest cheerleader, Steve) carry on with positive thoughts, heartfelt prayers, the ability to adapt, the highest of hopes and a sense of humour.

I believe I have given the Weldon Protocol for Chlamydia Pneumonia a fair try…with little to no improvement in my MS symptoms. After a year on three different antibiotics my gut finally told me to give up. I can report that I have more feeling in my feet, unfortunately it isn’t a good feeling. It is like when your feet fall asleep and then start to wake up. Yes, that is how they feel all the time! My feet are definitely more sensitive to everything, specifically anything painful. I used to love being barefoot, it was very grounding. Now I wear shoes all day to protect my tender tootsies. What is even more sad is my shoes are sensible (in other words ugly & boring). So much for sexy, summer sandals!

The real reason I am writing is to let you know that I have recently been working every angle I could to participate in an upcoming international mesenchymal stem cell trial. Unfortunately my most recent MRI showed “no activity’ thus I have been rejected as a candidate for the study. No activity means I am too far along in the disease for tracking or measuring results. I do not have any current lesions(new inflammation) just scarring. It is NOT that my brain isn’t working yet you can imagine the jokes I have had to put up with!

It will be tough watching from the sidelines however I have a lot of faith in mesenchymal stem cells as a viable treatment for MS and other diseases. These cells are derived from one’s own body or from human umbilical cords thus there is no need for anti -rejection drugs. From what I have learned these cells are restorative and regenerative. Albeit no one knows whether there will be any negative long term side effects. An upside is there is no need to risk depleting one’s immune system to begin treatment. I will be keeping my eyes open and my ears to the ground in regards to this trial. If this turns out to be “the ticket” everything must be done to move this forward as quickly as possible. Time is of the essence for me and many others like me.

Funding for the MS/mesenchymal stem cell research is coming from the MS Society. Dr. Freedman said there are only a few more hurdles to jump before the trial will get started; he is keen to get the ball rolling. Go Doc Go!

Posted by: michelezanini | April 15, 2013

On course

I have two months of the full antibiotic regime under my belt. I have not noticed a change for the better, at least not yet! It has been suggested that if these meds are killing the right bacteria I should begin to feel some change at the five to six month mark. It is somewhat discouraging to admit, if anything I feel weaker. Lots of love and laughter keep me well. Most frustrating is I continue to live with hip/back/butt/groin pain. I am on painkillers but it appears they can only do so much. Daily struggle with movement ensues however the feeling that I am doing something provides me with hope that this bacteria may be part of the reason for the MS symptoms.

The source of my pain is a saga unto itself. My CTScan showed a healthy hip but significant lower lumbar disc degeneration compared to my test from a couple of years ago. I am and have been waiting for 2 months to hear from an MSK specialist. Apparently 8-12 week wait time is normal. If I don’t hear soon, the pain in my arse may make me become a pain in someone else’s rear end.

This journey is challenging. Clearly my patience is being tested; especially now that the antibiotic treament means I cannot have my dinner-time glass of red wine. Those who know me well, understand this sacrifice! Sans my favourite drug I need to remain focussed on the joys of life. I want to have better health but I cannot let it keep me from being happy. I need to continue finding ways to live a meaningful life, even if it isn’t the one I had hoped for. My loving friends and family, and my faith provide me with the strength needed to adapt and change. My ever busy mind provides me with questions and new ways to find goals and purpose. My spirit and my soul continue to wrestle with changing what I can and finding peace with destiny. The meaning to life is not an easy premise even for those with excellent health but then again, aren’t we all a “work in progress”?

I think Viktor Frankl hit the nail on the head, “for the meaning of life differs from man to man, from day to day and from hour to hour. What matters, therefore, is not the meaning of life in general but rather the specific meaning of a person’s life at a given moment.”

Make every moment count!

Michele

Posted by: michelezanini | February 9, 2013

Chasing bugs

Since my last, rather desperate sounding blog I have visited my most understanding GP. He is concerned and willing to look beyond the MS. He is sending me for a CT scan. Did I ever mention the bonus of how cute he is? Plus that, he is not afraid to admit he doesn’t know everything. He is sending me to an orthopaedic surgeon, not for a hip replacement but for another opinion. It has taken considerable time but we have determined the pain is not coming from my back but from my hip. The cortisone injections in the two bursas brought some relief but there is something more going on and the symptoms I describe are confusing making it even more difficult to know how to treat. In the meantime and much to my chagrin, I am on two painkillers that bring the pain down to a level that I can live with…not gone, but I can smile more readily now (an awesome thing for those that love me).

Odd enough my hip x-ray shows all is healthy; perhaps the CT scan will show something in the softer tissues. With any luck it may be something that can be corrected by a nerve blocker injection. Fingers crossed there is nothing terribly invasive that needs to be done.

What is scaring me the most is how weak I have become. MS, pain, age, menopause and a sedentary job, I am not even as strong as my 82 year old mother (mind you she is pretty amazing!). The painkillers have helped enough that I am doing a few exercises again. As always, I am afraid to push too hard or the heat created by a challenging workout might leave me too weak to do anything for the rest of the day. It’s a fine balance; so I do little bits more often throughout the day. My workouts are pretty mild and would be considered tame by most standards. Something is better than nothing though, so like the Nike tag line, I break up my day and “just do it”. I continue to use a collection of strengthening and stretching exercises I have learned from many physiotherapists and my yoga teacher. If we ever win the lottery we might have to add a swimming pool to our place-ha!

I know I have made reference to the thought that the MS symptoms may be caused by Lyme disease, Chlamydia pneumonia, HHV-6, EBV, CMV, Toxoplasma, Protomyxoa rheumatic, metals and moulds. It is a long list of bacteria and other toxins to track down, many of which I have discovered, are not easily detected. I am not one to jump on just any band wagon but I am willing to try things that resonate well with me. The Liberation Treatment was not the complete ticket however I am still grateful for the relief I received. Clearly CCSVI symptoms are the same as some MS symptoms for me. I have not retained the balance I had post surgery but I am able to say that I have a better bladder (amen) and I sleep deeper now. Albeit pain can interfere with the latter, I still dream and treasure the fact I have that back.

I need not remind myself there is NOTHING being offered to me via mainstream medicine (aka my neurologist). I have decided to try a radical theory that MS is caused by bacteria. A bacteria that most of us have been exposed to by the time we are twenty. The treatment is a cocktail of antibiotics (all of which have been around for many years) taken for a year. Originated by Dr. David Weldon a microbiologist of infectious diseases; he applied the same protocol to his wife Sarah who has had MS for 20 years. I am choosing to try this unpopular, untested theory as the risks outweigh the possibility of eradicating a rather insidious bacterium. The targeted bacterium resides within our cells, and is stealth-like making it near impossible to find in a blood test. I might always regret it if I didn’t give it a try. Yes, long term antibiotics may wreak havoc on my gut flora, all I can say is cheers to yogurt and sauerkraut. Given time, lots of healing and some prayers, I may begin to feel better and HOW EXCITING IS THAT!

Posted by: michelezanini | January 11, 2013

2013 looks to be a challenging year

It has been an eternity since I my last blog and I am not sure if what I am about to write will make any sense at all but bear with me.

I feel lost, like I am circling around and getting nowhere fast. It is not as if I am not doing anything but what I am doing seems ineffective pain wise and MS wise (note I am still differentiating the two as I believe they are two separate issues). Yes, the hip pain may be caused by dragging MS legs but the pain is not simply neuropathic pain. The pain in my hip/back/groin/thigh however has become debilitating. It makes me weak and not able to do much of anything physical. Every movement is a chore. In December I succumbed to getting two cortisone shots, one in the eliopsoas bursa and the other in the greater trochanteric bursa. I had these shots a year ago and found they worked pretty well but was told by my physiotherapist to hold off as long as I could in between shots. The reason being cortisone is a steroid and over time could weaken these areas (like I am not weak now!).

I have been trying to stick to more natural methods to treat myself such chiropractics, acupuncture , massage, stretching and strengthening but no one thing has worked wonders. As the pain has gotten worse I tried pulse electromagnetic field therapy, which is a sweet possibility as it helped for a few hours but again not the be all to end all. Quite honestly there are not enough hours in my day to keep investing that much time and energy ($$ too) into one body part, especially when I have other body parts that need attention. I have not had time to do a full yoga practice for months. The pain has been so bad I do not even go near my bike, just looking at it hurts.

Did I mention the cortisone shots brought the pain down but only enough for me to realize how bad the rest of my hip feels. Clearly this is the year that I must get answers to my hip problem, not to forget the dog-gone MS, which by the way has been taking its toll on me too. My left hand is weak; so weak that writing and eating are challenging and embarrassing. I didn’t mind giving up clothes with buttons and I have gotten used to doing the grocery list on the computer (more so for Steve being able to read what we really need at the grocery store, he often comes home with surprise items where he guessed what my scribbles meant). Seriously though…I have never asked “why me, why do I have MS?” but now that it has come down to making me sloppy and messy, I have to ask “why my predominant hand?”. I love to eat, especially to dine out and try new foods. To me it is such a fun and fine social event but I hate being challenged by a simple knife and fork and not being able to appear like a proper lady!

On the bright side, it was an amazing Christmas. Fun filled, with lots of laughter, good food, precious family time and sweet memories made with dear friends. Over did it? Heck YAH! Paying the price; without a doubt…

Has this pain and other MS symptoms sent me over the edge? Have Christmas stressors and some new household stress done me in? Have the physically irritating and worsening MS symptoms been the straw that broke the camel’s back? Undoubtedly all factors contributing to the way I feel. The lack of sleep and the need to get back to work added more pressure. Quite literally and not like me, I CRASHED! Monday I was “a mess” which sounds like “MS” but as I have just described there is more to it.

I tried, but could not get into my doctor. The nurse at Health Link told me to seek emergency care. Poor Steve didn’t know what to do with whimpering, simpering me. We knew in our heads that there was not much they could do to help me at the hospital but our hearts had hope. Seven hours and two shots of morphine later I was sent home with a perfect hip according to the x-ray and no hip MRI (which is what we had actually hoped for as it was suggested to me earlier in December by the radiologist that injected one of my hip bursas). The hospital doctor’s recommendation (wait for it, wait, wait) was to visit my GP. NO KIDDING, like I didn’t think of that in the first place! The doc gave me two prescriptions, one for pain and one anti-inflammatory. I must admit the morphine seemed to break the pain cycle so I am continuing with the meds for now.

Am I at 54 years old, at a stage where I say quality of life versus quantity? Do I let the pain killers beat up the insides of my body because even as I am writing I feel somewhat nauseated? Yes there is less pain, not necessarily as good as I felt after the second shot of morphine but certainly better than I felt on Monday morning. The problem with the meds is I feel sweaty and queasy; to the point where I had to lay down on the cool office floor several times while working at home on my computer this week. The meds obviously don’t agree with me but I am not willing to let the pain get out of hand. I see my GP next Thursday. It will be a long week.

The fact remains I am moving slower, my steps are more laboured and deliberate, and we are not just talking age here! Sure it’s a factor but not the main issue. MS and pain are to blame. I am noticing more and more MS muscle spasticity in my legs and hips. It is very difficult to bring my knees up, my legs lock. It is frustrating to roll over in bed and scary to walk without fear of tripping on my feet. My walk-aides aren’t helping as much anymore. Again in order to stay sane, I must remember to celebrate I am still moving. For me staying mobile is not an option it is a MUST! I crawled when I was younger and I will crawl again if it will re-teach me how to walk. My motto…keep moving, keep pushing because even pained movement is better than none at all, unfortunately seeing me in pain is driving my hubby nuts. I have to find a happy medium for both our sakes.

To make my current situation even more interesting; the naturopath I visited when I went for pulse electro-magnetic field therapy has many thoughts surrounding diet, herbs and emotional components surrounding chronic disease. His bizarre testing (based on Dr. Dietrich Klinghardt’s methodology) showed I have 4 Lymes, fungi, parasites, plenty of toxic metals plus chlamydia pneumonia in my body. Odd enough, all things I have been researching of late.

So it seems, 2013 looks to be a challenging year. Once I get myself on an even keel, I will be exploring a few more possibilities to improve my health and I hope to be more consistent at keeping you abreast of the many, hopefully unfolding mysteries of living with MS.

Happy New Year,

Michele

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,

Michele

Posted by: michelezanini | June 23, 2012

And the discussions continue…

The Canadian study published in June 2012, casts doubt on any effectiveness of the Liberation Treatment. However for those that have felt improvement post treatment (even if only for a short while) know that it must play some role in the disease. Thankfully dentists, interventional radiologists, chiropractors and vascular surgeons continue to gather information and share ideas. Even if collapsed veins only play a small role in MS, from where I sit (because walking and standing is challenging) it is still worth studying.

It has been suggested that collapsed veins and poor blood drainage might be attributed to many factors; the jaw, the bite, previous head and neck injuries, misaligned vertebrae, tight muscles the list goes on. I am currently visiting a NUCCA chiropractor to see if re-alignment of my upper cervical spine might bring some relief to my aching body. Thus far the effects have been subtle but I do not expect things to heal over night (drats!). Soft spoken, gentle handed Dr. Hasick reminded me that he can only help me by bringing better alignment in my upper cervical spine, “the rest is self healing and maintaining hope through the ongoing process of self discovery and self-healing”. These things are very important to maintaining a good quality of life, but Holy Hannah, I am finding it difficult to achieve these things! Call me a constant work in progress but aren’t we all?

THANKS Kathy for loaning me Ending Denial, the BIG book on Lyme disease. It is not an easy read however I have been able to take in the basics and ask some reasonable questions of my Naturopath. This is new ground for me. It is surreal that if MCIS (Multiple Chronic Infection Syndrome), formerly known as Lyme disease, can produce symptoms similar to MS (and other auto immune diseases), yet we are not working on more accurate serological laboratory tests and effective treatment. It is a fact that auto immune diseases are on the rise, oddly so is the growth and reach of bacteria infected ticks.

Did you know that it is possible to contract Lyme disease without having the highly recognizable bull’s eye rash? Did you know that most of our Canadian doctors are NOT Lyme literate? Did you know that most ticks carry more than one parasite? What do we really know about Lyme disease, is it only a zoonosis? Ticks are ectoparasites (external parasites), living by hematophagy on the blood of mammals, birds, and sometimes reptiles and amphibians. What about the our exchange of bodily fluids? What about insects like mosquitoes? Wow listen to me, Mrs. Mitchell, my grade 12 biology teacher would be so proud.

If one were to look at a map of reported Lyme disease, we have very little in Canada…do the ticks (like rats) know where the border is? HA! We have mammals, birds, and sometimes reptiles and amphibians in Canada, don’t we? Perhaps we are living in denial?

It is true we Canadians are polite and will let others in front of us in a line up but why do we do this when it comes to our health. Why doesn’t the CMA want to be in the forefront of modern medicine? The CMA has revoked licenses from doctors that were breaking ground in regard to Lyme disease. Oh my gosh, it is like the Liberation Treatment and the reluctance to step up and consider other factors may be at play. We continue to hear news stories and warnings about Lyme disease but we hear nothing about those that have been ill, sought treatment and are feeling better.

Time continues to literally “tick” away. Perhaps this is a desperate road to travel, maybe I am grasping at straws but I am not being treated to get better. I am being offered a cacophony of meds to treat symptoms. I do not believe anyone’s body is saying “ah just what I need is a rash of man-made drugs to placate me until the day I die”.

I believe in the truth, the peace, the calm, and the power of “Surrender”-Elizabeth Kubler-Ross and David Kessler, Life Lessons, Scribner, New York, 2000. As my dear and kind friend said, every thirty minutes there is a time to “surrender” to life “as is”. Barb, I will always treasure your timely, helpful sharing of such a precious tool that is now in my toolkit too. I will learn to gracefully surrender more often; it is a beautiful child like art! As a matter of fact as I have been feeling physically and emotionally worn out this past couple of weeks I chose to surrender. The best part was realizing that I was not giving up, just letting go. I feel more rested now.

However when it comes to changing what I believe can be changed I am not ready to sit back and accept that the struggles of living with MS are “what is best”. Not for me, not for others diagnosed with MS. Again, I am not prepared to wait, I am turning over rocks, I am forging ahead as an advocate for my health. I am poking around right now and not confident to say more at this point but believe me, there will be more to follow, stay tuned!

As my hubby’s friend Brent always says, “PEACE”!

Posted by: michelezanini | April 26, 2012

The list goes on

A couple of weeks ago I visited Dr. Shaun Riddle, a highly regarded naturopathic doctor with clinics in Calgary and Scottsdale. After reviewing my medical history (WARNING his patient intake forms were ten pages long -wow), he spent plenty of time with me. I was mistaken in thinking my dentist friend, Dr. David Williams and he, Dr. Shaun had collaborated about me and what I have done in battling MS. I thought I was expected so there was some initial confusion. Once I realized any prior conversation he had with Dr. Williams was not specific to me,  I was a “new patient”. Thus Dr. Shaun offered his ideas, as mind blowing as they were. He sweetly said MS is such a difficult disease, everyone having such different symptoms…maybe I have Lyme Disease and MS making things worse. I have to admit I am more confused than ever NOW.

I left with less hope for neural therapy (the treatment I actually went for), a new avenue called Mold toxins and “YES” more information about Lyme Disease. Dr. Shaun encouraged me to research and to consider pursuing both of the latter possibilities. He told me to read Mold Warriors written by Dr. Ritchie Shoemaker. Heck, learning can’t hurt and I while I am reading I can certainly assess whether I show signs of mold toxicity. The book is on its way via snail mail but SERIOUSLY…think about Lyme Disease…again. I just recovered from the results of that darn expensive, non-productive blood test. Dr. Shaun was adamant that these tests are sensitive and often produce false negative results-sheesh, what’s a girl to do?!

I have seen people so desperate to regain their health they will do almost anything. Am I there now?  Is Lyme Disease real? Why do the symptoms have to be so similar to those of MS? Is Toxic Mold Disease worth chasing? Why do I have to go to a naturopathic doctor to talk about this? If these are viable health problems why isn’t the Canadian medical system working on better testing and treatments? Oh they talk about ticks, how to avoid ticks and some of the harm caused by these little buggers.  But does anyone really know how to remove one if you even happen to notice it before it burrows into your skin? Is your head spinning yet, because WAIT there’s more! Wonder if the disease ridden tick is too small to be seen? Wonder if you don’t get an obvious rash or fever? Wonder if the spirochetes (bacteria) entered your system ages ago, by a blood transfusion or a double-dipping mosquito? What about the treatments, cocktails of penicillin, long term antibiotics, and herx reactions while the bugs are killed off? Is Lyme Disease just a farce (our Canadian medical system doesn’t seem very well informed) , or is it a mere “money grab”? And if it is, how cruel and unjust to ask for precious dollars from people who are most likely not able to work hard and earn a good living. It is literally-a bloody blooming vicious cycle!

I don’t think I have ever been so confused: I feel the need for truth and clarity,-does that come in bottle? I’ll buy a dozen!

I have written Dr. Steven Hines at Hope Wellness in Texas. He is the one who recommended the Spirostat lab that I used. I hope he chooses to respond. I would like his full explanation of my test results. I have asked for him the rate of false negative tests, and how many more $1250.00 tests he thinks I should do! I am kicking myself for not asking for facts beforehand.  Who knew? I believe I am getting cranky, a state I prefer not to be in. Jeepers, creepers I went to have the controversial Liberation Treatment…in India, with less fussing and fretting…grrrr!

I am circling back now, to my visit with the ND, Dr. Shaun. He seemed surprised by my request for neural therapy. He did however agree it was worth a try and provided the therapy with a mild warning of the unknown side effects. The ND was not certain whether the procaine injections could go deep enough into a 25 year old surgical scar that runs the width of my abdomen and the depth an inch short of my spine.  Apparently some people feel almost instant differences, both good and bad. Dr. Williams has witnessed positive results where procaine was injected into old root canals, which is a very cool connection! I didn’t expect to have any bad side effects so I didn’t dwell on it. I really wanted to feel an opening of the meridians blocked by scar tissue (damn, I sound like a voodoo doctor now). I did however remain cautious and calm not wanting to create a placebo effect (which is what many feel happens with the Liberation Treatment). Sensing neither negative nor positive effects, I am currently quite ambivalent towards neural therapy.  I will go for another couple of treatments just to give it a fair shot (no pun intended-ha!).

My next step is making sure I do or do not have Lyme Disease. I have a request of those of you that have followed my journey, please let me know if you know a “real person” that has been clearly diagnosed and successfully treated for Lyme Disease. I am very interested in learning more before moving forward with this next possibility.

Keep on keeping on and again, thanks for your ongoing and continued support.

Michele

Posted by: michelezanini | March 12, 2012

In a nutshell

As mentioned in my last BLOG, the jaw/bite/neck treatments I pursued have not lessened any of the MS symptoms but I have noticed more movement in my neck, less jaw pain, and I am sleeping like a baby now.  I will have to continue most of the prescribed routine into my daily life in order to maintain this positive change. YES, even in my very charmed life, MS and its’ cruelties cause me STRESS and for the most part (like any woman), I hold that stress in my shoulders and neck.  Whether it has been the exercises, the tens machine, the alpha stim…only the good Lord really knows what has helped (and that is another question for the big guy when I get there!).  What I really need to know is where I lost a pair of earrings I borrowed (without permission) from my daughter, bad mother! Not the first question you thought I would ask!
It was suggested that I have my blood tested properly for Lyme disease, other spirochetes and bacterium. A simple blood test, I was all in. Many of the symptoms for Lyme disease are like those of MS, or is it visa versa? Regardless we found out that Canada has an economically-based, fairly inaccurate and basic testing. Thus as recommended, we paid a dear price to send my blood to a laboratory in Texas. I was excited to think I might have found the eason for all of my woes. The results came back and showed NOTHING in my blood, NOTHING! I know that Lyme disease can be treated, and that there are specific doctors having excellent results.  To be honest I was terribly disappointed that the symptoms I have were not a result of Lyme disease. It felt weird knowing that I was sad because I wished I had Lyme disease not MS. I was unglued for a few days, another strike out, oh well what can you do? I am over it and moving on.
Finally it has been determined that I have serious hip issues (perhaps from dragging my MS legs around). Hip issues that have been causing me a fair bit of pain for a long time. Originally the thought was that it was MS neuropathic pain, treated by many drugs with no relief. Then it was thought it was back pain, more drugs, some “less than helpful” physio and a half a dozen cortisone facet joint injections with no relief. I have had to persist in seeking treatment upon treatment for years; the list is too long to rattle off what I have done. Last year I went back to my GP and asked him to pretend I didn’t have MS, and we started the process to determine the root of my pain. X-rays, ultrasounds, MRI’s, different clinics and at long last I am finding help at the Advanced Spinal Care Center (thanks to my sweet GP). I am now working with a wonderful physio therapist. Talk about jumping through hoops but worth every effort! I have made a dozen trips or more but have found some true relief with cortisone injections in the eliopsoas and greater trochanteric bursas and some targeted exercises. I have gained a range of movement I didn’t even realize I had lost. The pain level has decreased and I am able to do more of the exercises I need to do to stay strong and upright! 

Lookout world, I am moving forward living well with MS. I have come to realize that although “the proverbial WE” are all clumped into the category of having MS, our symptoms vary so much. I think WE have to do our own thing; listen to our bodies and follow our hearts. Honestly and sincerely I trust the wonders of modern Western medicine (which saved my life in the past), yet I have found comfort in many of the marvels of Eastern medicine as well. Meshing the two has been an awesome alternative for me. The challenge is choosing treatments that are fairly safe, and resonate well within. Having had major pancreatic surgery a year and a half before my first obvious MS symptom it has been suggested I try neural therapy… I am booked to see a highly recommended doc in a couple of weeks, wish me well.

My best to all,

Michele

Posted by: michelezanini | January 19, 2012

MIA for a while

Yes I have been MIA from writing the blog but for so many good reasons. Our cruise was out of this world. It left us with dreams of another and another. We are saving, madly!

Christmas was busy fun, celebrating with both families and realizing how lucky we are to be able to do that. Then we fulfilled one of Steve’s lifetime wishes of a few days in the mountains, creating memories with our girls and our son in law. Surrounded by snow, they tried snowshoes and x-country skies, we cuddled up around the fire, played games, and just relaxed. Then (in a whirlwind) we were off to bring in the New Year with our buddies in Vancouver.

Given the above charmed events, it is taking time for me to get back into my routine. I am openly admitting I am feeling pretty weary. Perhaps it is age, or maybe because it is winter BUT here’s the scoop….

I am lucky to have a wonderfully, flexible job, and an employer that provides understanding and support for my desire to maintain “the ever precious work/life balance”. It is important to me to be working outside of the needs of me and my family. It keeps me on my toes and provides a great diversion from the struggles of living with MS. Yet I continue to spend a lot of time taking care of my health. How exciting is that!?

Once I finish work I am stretching and meditating with yoga, strengthening muscles on my recumbent bike or doing floor exercises… having a massage or going for acupuncture (both are as routine as personal grooming). Ongoing is my hip/back issue. I have been seeing a physiotherapist who has determined my pain is most likely stemming from my hip. Probably not neuropathic, most likely mechanical aggravated (perhaps even caused by) dragging heavy MS legs. Believe me my legs feel ten times heavier than they look! Lord knows my hip pain could be from the multiple falls I have had on my left side (Home’s Funniest Videos could shoot an entire show!). Cortisone in the elio-psoas bursa has provided some relief but some pain lingers. It is interesting though, that the relief from the hip shot has been much greater than the three I had in my lower spine where the osteo-arthritis is. Never capitulate and never just accept “that is all there is” when it comes to taking care of yourself. I am a prime example that WE NEED TO BE AN ADVOCATE FOR OUR OWN HEALTH.

With that in mind what is going on, my blog is about living with MS? I had the liberation treatment two years ago in Bangalore with some symptom relief. Some good things have remained like dreaming and better bladder control (which is great, don’t get me wrong but I want more!). For the most part the boost in my strength and balance did not last thus my trip a year ago to California to have my valves ripped. FOR ME I am holding my own. Contrary to my neurologist’s predictions I am still walking. With a walker for the most part and it is slow and laboured, but I am moving. I am happy that the liberation treatment has helped others to a greater extent but what have we learnt from so many of us that have sought this procedure. It is not THE CAUSE, it is not THE CURE but a piece of the puzzle. Dr. Zamboni has opened the doors for more thought and more ideas.

I am currently working with a dentist to adjust my bite and relax muscles in my head, neck and shoulders. Hopefully what blood flow I have will improve. It is a daily commitment with weekly outings…it is long, time consuming and an arduous task. Every day I wear a bite splint, (which is the butt of some humour between Steve and I), take MSM pills, massage with MSM cream, ice my neck, do neck and jaw exercises, use a tens machine, an alpha-stim machine; weekly trips for ultrasound, more massage, micro-stimming, and cold laser (WHEW, that’s tiring just writing it down). It is only one possibility but it provides me with a HOPE and the knowledge that I am doing something to change the way I feel.

What is keeps me going; what makes me happy? It is my decision to enjoy more of the little AWESOME things in my life (which my daughter pointed out , could be as simple as finally getting that popcorn kernel out of your gums). NOT GIVING IN, NOT GIVING UP! I will not leave any rock unturned in my pursuit to live a good quality life, period!

Think about it… have you ever had a simple, little, AWESOME thing that just made that moment in life SHINE? Right now it’s being able to write this blog. Stay healthy!

Posted by: michelezanini | September 16, 2011

Louis Armstrong’s song What a Wonderful World still applies!

I wonder what transpired at the CCSVI Conference in Sidney BC on Saturday. Once I connect with Dr. David Williams, I hope to get the scoop first hand. I know it will be a Reader’s Condensed version from the very busy dentist. After speaking at the event I bet he has been overwhelmed by both curious attendees and those wanting to offer support surrounding his CCSVI theory. For me, the exciting part is that Dr. Williams said “it is wonderful some patients have clearly found benefits from venoplasty, the true learning will come from those of us that have only had minimal relief”. He and hopefully many others are asking why, what and how. My faith and hope currently lies in the hands of others. For now, I will do everything in my power to stay healthy, physically strong, mentally alert and spiritually full.

Despite still feeling pain in my back, hip and groin, staying positive right now is easy. I honestly feel that the treatments have warded off some of the progression of the MS. Hey, two years ago my neurologist suggested I would not be standing on my two legs “much longer”. Look at me, I am still upright! Albeit may not be pretty but I am still getting around and that alone is a celebration given his sad prediction.

There is no way a person could be a gracious as Jack Layton (he will be missed) but I just need to reflect on a few things to make me smile.

It was a glorious summer and it looks like it will be a gorgeous autumn too. Fall happens to be my favourite time of the year; to me leaves that are turning colours are one of Nature’s most awesome sights. It is such a nice surprise when simple things actually take your breath away!

I am surrounded by loving family every hour of every day. I just have to close my eyes and think of what is in my life. I am lucky to have two caring and thoughtful, young adult daughters. One specifically, who is concerned about my future. Cautiously and courageously Sarah approached us about alternative housing and other options that might make life easier for Steve and me. Selfishly I told her my goal is to live each day to the fullest and not take my MIND to places where my BODY might follow. That is my way of managing to live happily with MS. I know it is somewhat unrealistic but it is how I thrive and survive. Our dear Sarah even seemed to accept my curt and crazy response when I said that the future is a “blue job”(otherwise known as another task for Steve). The comfort comes in knowing that Sarah is aware of some of the pitfalls of living with MS and will always be diligent about helping us maintain a great quality of life!

My Grandma (our girls called her GiGi) lived a long life waking every morning to greet a goal-how wise she was! I maintain a fairly full calendar with something “shaking” almost every day of the week. Given my challenges I am sure GiGi is proudly watching over me from above. To have been able to spend precious time, listening and learning from such a strong and smart woman is just another one of my blessings!

Something special that is adding to make my world so wonderful is that we are about to embark on an unbelievable journey to the Mediterranean with treasured friends. Donna, Murray and Yvonne don’t seem at all concerned that I am a slow moving unit. How marvellously lucky we are to be holidaying with friends that can look past the disease and into our very souls for fun, laughter and making memories together. Yes, enjoying a bottle of good red wine together helps too!

Speaking of memories Steve and I are so fortunate to have both sets of parents with us; to lean on and call upon. They continue to teach us how to show love, accept love and be forgiving of each other. They constantly provide us with living, loving examples of being a family and maintaining a long, lasting marriage. Happy 54th Anniversary to both sets of our parents!

Let me wrap this BLOG up by sending you my best regards and warmest wishes that you can take a moment today to reflect on your wonderful world!

Ciao for now,
Michele

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