Stimulus Not Austerity...!!

Since my last post, six weeks ago, I've caught on how to attach photos and links to Blogger. My focus remains on wellness, and stopping the progression of this mysterious MS dis-ease.  I do this by researching; following my nose, reading other MS patient blogs, and keeping tabs on the enlightened MS  "dot orgs".  They are all terrific.  Within reason, I apply a "Stimulus not austerity" approach, meaning I don't "tighten my belt" too snugly when it comes to health matters.

You've given me positive feedback and encouragement on my first posts, so thank you!  October means I will have a milestone birthday on Halloween.  (Dear cute little sweet-toothed goblins, you're going to get a delicious apple, please don't play any tricks!)

The two salty, grinning sailors below are Greg and moi in San Diego. That's Point Loma in the background, directly across from Coronado Is.  The swells were high that day out beyond the Point. I grabbed the best seat, esp. since I felt a teensy seasick. I was initially apprehensive about the excursion, but with a just little help getting in and out of the 40' Catalina, I overcame these MS-related fears and insecurities.  From my high vantage point, it was possible to look down right into the sea water and see all kinds of sea life.  Sea algae, part of my Paleo food plan, was abundant and particularly fascinating to watch floating by.   OMG - the fresh air!!!  It was 72 degrees. I'd just spent all summer mostly indoors because in Phoenix the temperature climbed to 117 degrees.  I'm very heat sensitive.  The 45 degree temperature difference brought on Stimulus #1.  I became much more feisty.  Life is rich.

I've seen my new Naturopath doctor, with ACAM credentials (American College for the Advancement of Medicine, a progressive integrative medicine organization).  Doc Mitchell also happens to be a neighbor.  I had to laugh, I told him my tinnitus was on my left side.  But soon after, I got very loud ear ringing in my right ear too.  I felt like Marty Feldman's "Igor" character in Young Frankenstein, where his hump shifted from left to right and back again!  The game plan is to once-and-for-all rule out toxins, check for subclinical or hidden viruses, bacterias, parasites, and test for heavy metals.  At this writing, my bloodwork is out for micronutrient analysis at a specialty lab in Texas.  If there is some essential nutrient missing, something that figures into demylenation, then the doctor will put it back in. There's Stimulus #2.

Having the diagnosis of RRMS (Relapsing Remitting MS) since 2003, I find the terminology and reality oxymoronic.  RRMS follows a less progressive course, but progressive nonetheless. There's always been a gradual decline, even without relapse, and it scares me.  It scares me because I take such good care of myself, my mitrochondria, my endotheliem, and still the bugger hangs on.  My specific CCSVI improvements are the only positive directionals.  I would like to travel to San Diego, this time to have another CCSVI procedure, and maybe a sail, that's a future Stimulus.  The "lavish spending" efforts are very much preventative, before this mysterious MS dis-ease morphs into an even more sinister and progressive version of itself.

I'll wrap up with a picture of a beautiful Paiste healing Gong.  Symphonies and rock bands (i.e. Led Zeppelin) use Gongs. Sound healers also use them. The healing vibrations of a well-played Gong have been known since ancient times.  I went to my first Gongbath this summer and experienced an unbelievable improvement in balance, and a clearing of the pressure inside my head/brain.  I had literally needed someone's arm to help get into the building, and walked out later rebalanced, on my own, and with a spring in my step. :~)  They're called Gongbaths since their blossoming vibrations bathe the human body.  For more info and books on Gongs and exactly how they heal, I invite you to visit: www.healingsounds.net.  #4 Stimulus.

(What I really just want to tell you is that for my milestone Halloween birthday, I'm having 30 of my best friends over to a special venue to experience their first Gongbath, graciously given by Gongmaster and friends, Jere and Ellen.  Now, how do you like them apples? ) 

Be well, allow beauty into your life, remember that every personal connection is meaningful, and, that laughter is life's sweetest creation.

MS Is My Homework Assignment

NOTE:   CCSVI stands for "Chronic Cerebrospinal Venous Insufficiency".  It is a vascular condition where there is obstructed blood flow in the veins that drain the brain.  The blood may reflux up back into the brain and spinal cord, causing damage.  It is a term originated in 2008 by Dr. Paolo Zamboni, a vascular surgeon and researcher in Ferraro, Italy.  His basic hypothesis that vascular issues are linked to MS is not new, there are multiple scientific reports for same, dating back over 150 years.  For more excellent CCSVI information, I invite you to visit CCSVI.org, and CCSVIbook.com.

Exactly seven months ago, having tested positive for venous obstruction, I was lying on a hospital gurney, being wheeled into the OR for the venoplasty treatment.  From my horizontal perspective, the room looked like a big industrial kitchen, such as one would expect at a Four Seasons Resort.  There were at least a dozen medical people, everything looked stainless, and state of the art.  How could I be the only patient in this room, could this all be for me?!? Such is the beauty of modern medical care.  The whole team prepped, prodded, monitored, and spoke with me: nurses, surgeons, other unidentified persons, and anesthesiologists.  All personnel were crisply uniformed, and focused.  I was very interested and wanted to watch it all, even though under mild sedation.

I literally WAS the show.  My CCSVI procedure was being filmed and shown live to a group of 600 visiting physicians, gathered in a grand ballroom at a nearby resort.  Their host was my surgeon.  I had previously signed a release agreeing the filming.  Even without any royalties (Ha!) it was my small way to bring this new treatment to a wider professional audience.  My surgeon was a world-renowned heart specialist, born to use a scalpel, and he inspired nothing but complete trust.  He personally had become interested in CCSVI, had flown to Bulgaria for training, had met Dr. Zamboni, and had performed 70 procedures, thus making him the shoe-in choice.  While his hands were busy snaking the catheter around inside my veins, he was talking through the procedure for the audience.  Another doc stood by my head, advising me when to breathe in and breathe out.  There was double of everyone, two pain docs were nearby and whenever I signaled discomfort, they would administer some pain relief into my IV drip.  (After, in his written report, my doctor said I tolerated the procedure very well, to which I agree; for me it was a piece of cake.)

Many people with MS debate where to go for the CCSVI treatment.  Canadians must go out of country, a very unfortunate circumstance.  I was fortunate, my neighboring state of California had two likely places, and there is a Health Institute down in Baja for the vacation-minded.  But, I had corresponded via email with a Canadian MS Charity, and they responded right away with the name of a local Heart Hospital, right down the freeway from my home.  Geez.

I spent a bit of time down at the hospital, before and after, and had a chance to speak with hospital personnel.  They said that MS patients had become their favorites;  we were the most upbeat, the most grateful type of patient.  The nurse reiterated what I had known, some MS patients experience very high gain after treatment. Some feel symptom relief while still on the table.  This last is what astounded my surgeon the most, and what lead him to get Institutional Review Board (IRB) approval to offer the treatment.   I expected little, but hoped for the best.

My husband, a few friends and even one CCSVI alum were all gathered down in the hospital cafeteria, which they had virtually to themselves. Because of the doctors' Conference, no patients were scheduled that day, and my band of supporters had the place and staff all to ourselves.  Everyone was helpful and personable. I noticed I was still weak and unsure of my footing when I got up and walked around.  Discharged as sunset, it had been a very long day.  I was assured that if anything should come up, I should consider this my hospital and come right back over.  But, being a venous procedure, she doubted any complications would develop.  I left with no scripts, and a post-operative follow the next morning with my surgeon.

Back the next day we went.  I was not feeling any better or worse, and told them.  I think they were a little disappointed.  We posed for pictures with the two doctors.  I was wondering about scripts to fill, further follow-up, and insertion-site healing.  There were no scripts, no further in person follow ups.  My insertion site healed in a few days, like a mosquito bite would.

Back home, I monitored myself almost obsessively for healing.  And, I experienced some in the most unimagined way.  My left arm, the MS problem side and where the jugular stenosis was found, got transformed.  Much of which holds to this day - seven months out!  I'm left handed, and had been unable to write longhand for many months.  The pen would just drop out of my hand.  My range of motion was diminished, the muscles had shortened; and I was having trouble raising my left arm over my head or out to the side.  If that weren't enough, I could no longer sleep on my left side.  All this was healed to a great extent within days.  Now, I use my left arm and marvel at this little miracle.  There was a teasing of other improvements, but, sadly, they did not "stick", and some are still worsening.

There never comes a guarantee with CCSVI treatment. All people with MS opting for this new treatment should know this before being wheeled into the OR.  MS manifests itself differently in each individual, and CCSVI outcomes also manifest differently.  Although the top doctors, researchers and physicists collaborate and share information, it is very new and there is no one standard of treatment.  Variables in treatment protocals are being openly discussed at many medical conferences.  Patients, like me, and our caregivers need to keep up our end with healthy life style choices.  I am astounded that I was helped to the extent I was; that my blocked vein was opened by a tiny balloon which translated to relief in my whole left arm and shoulder.  But am I looking for more, Yes. I do want, simply, to be totally well.

...The Mystery of Wheat and Gluten Intolerance

This week, I noticed a shift in the air around me, I'm being transformed by the way-cool feedback I've been getting on my new blog.  Thank you! My energy is different; no, I'm not exactly ready for bike-riding,  but I'm needing less sleep.  I've found a new purpose to my days.  Sleep, some say, is like a temporary death anyway.  I'm reaping the benefits of " the power of loose connections".   Readers and fellow MS bloggers from near and far are reaching out.  Please join my blog.  There's some bugs in "blogger" software, so get in touch via other channels, like regular email, not "google friends".  I'm now going to tell you about my week's extracurricular adventure and, for the medically inquisitive, gluten intolerance and its mystery.

So, Tuesday evening after dinner I tried something different.  I drove over to a functional MD's after-hours lecture on wheat and gluten intolerance.  I walked in, sat myself down on a rather hard folding chair, and hoped to remain wide awake for the next two hours. It turned out that was no problem at all.  I got a bit emotional - Beethoven's 9th was playing softly and its a beautiful piece.   Humm, a doctor's office with a mood-setting stereo system, fancy stuff.  A woman, a complete stranger, sat down next to me.  Noticing my cane, which I carefully, but unsuccessfully, always try to hide, she said: "If you're going to have a cane, its good to have a stylish one.  I've a feeling you're going to get rid of it here."  She then got up and sat somewhere else.  I think she was an angel.

Check out Bob Dylan's first track, on the CD "Modern Times".   "I'm gonna forget about myself for awhile so I can see what others need."  The doctor told us he doubts that 90% of MDs are even aware of this topic.   Celiac disease and/or gluten intolerance is very widespread in both adults and children.  I knew about it because eliminating wheat and gluten is common for many people with MS active in their recovery mode.  (An analogy: the general population getting the message loud and clear that tobacco is a no-no.)  A person can have gluten intolerance with no gastro-intestinal symptoms - it can show exclusively as a neurological disease, compromising the brain and nervous system.  Like other degenerative disease, it involves intra-cellular inflammatory processes.  Sound familiar, MSers?   For the record, I absolutely believe vascular disease, CCSVI, is also a culprit in MS.  More on my personal CCSVI adventure-experience soon, in a future blog.  Its a topic so important it needs my total blogosphere.

The program went on to say that gluten elevates cortisol, an anti-inflammatory hormone released by the adrenal glands.  Too much cortisol production depletes the adrenals, not a good thing.  You can ask your doctor to test your cortisol levels.  Gluten intolerance can also present as "Ataxia", meaning lack of muscular coordination, unsteady gait, wobbliness due to the brain's failure to regulate the body's strength and direction of limb movements.  I hadn't known any of this, because it never is mentioned in my 15 minute widely spaced neurologist visits. The mean age Ataxia shows up is often between 48-54.  BINGO - I had to give up my bicycle riding at age 54.  I couldn't stay balanced every time I had to come to a stop.  Same would apply to motorcycle riding, were I so inclined....

Its becoming more widely reported, by both patients and medical professionals on research's cutting edge, that some MS folks are halting and even reversing their symptoms/disabilities.  Patients are doing this simply by changing their diet and totally eliminating wheat, gluten and dairy.  I believe there's so much to learn and that no one has all the answers.  I rec'd some excellent advise this week in the form of an email from a doctor very involved with MS recovery.  "Think deeply and read widely".  Before Tuesday's lecture, I thought I'd achieved 100% gluten freeness.  I may have been wrong.  Gluten sneaks in innocuously in ketchup, for one.  Oats are a safe grain, but can be contaminated in their manufacturing process. When I've traveled, I've ordered oatmeal, mebbe causing an imperceptible but damaging inflammatory response in my brain. 

I've asked people with MS why they don't follow a gluten and dairy free diet.  What they say is that freedom to eat whatever they want is one of the few remaining pleasures in life.  In the spirit of equanimity, I let it go at that.  I also read something unsaid: "My neurologist doesn't tell me anything about diet restrictions, and I only follow the doctor's advise."  That's very sad.  I can truthfully tell you that in my house, we have never eaten so well, with so many different varieties of veggies, meats, fish, seasonings, textures, then at the present time.  So what if the bagles or chips are long gone? My loving husband Greg is thrilled to get home, smell the aromas, and reap the rewards of my healthy addiction. A significant portion of my "budget" goes towards this lifestyle.  If I can't ingest it, rub it on, read it, or be entertained by it, I'm not too interested anymore.  A certain affinity to the kitchen also gets me standing up more at counters, a side benefit people with MS and their physical therapists can relate to.  So, let's be cool and get the inflammation down!!

Hey - don't forget to email me,  or otherwise follow my blog anyway you can.   Thanks for reading!

My disability-grade MS fatigue

It was bound to happen; that I start blogging about my predicament with MS.  I haul my disability-grade fatigued-self around, or not, depending on energy level.  Even with pacing myself, I can't insure success with even the most modest of plans, since the fatigue comes like WHAM  - with no warning.  I just wake up that way some days, like today.   Was it something in last night's dream that riled up something unresolved in my subconscious?   Is that the root of MS, of all disease?   That's a theory authors Louise Hay and Leonard Laskow, MD may say.

Full disclosure:  On the flip side, some mornings, maybe a few in a row, I wake up more energized, by the time I walk from the bedroom to the kitchen I "know" I'm on a good roll.  My legs feel more connected to the ground, I am using more of my left leg and the sole of that foot. I don't trip over the rugs.  I move with better speed and confidence.  I have a healthy appetite, want to exercise in my backyard pool, and think of creative variations to my daily routine.  The energy can last until mid-morning, or if I'm really fortunate, almost all day, if I pace myself. 

Back to the fatigue:  Let's say I've a "date" out in the world, like this Wednesday.  I  woke up exhausted, but decided to soldier through anyway.  That added a fatigue layer something akin to suffering.   And, I must have communicated that to my trusted automobile, Tupelo, whose "check engine" light came on.  The laws of the universe are consistent, and don't lie.  I think the car was signaling me to turn around and come straight home for a nap.  The Prius and I are One.

I'm lately thinking its time to see a Functional medicine MD.   Functional medicine will test to see how my DNA impacts my enzymes for metabolizing toxins, neurotransmitters, etc.  It will also test my toxic load: bacteria, yeasts, parasites in the colon, possible food sensitivities.  (I have been strictly gluten and dairy free for a long time, if nothing else, I hope to impress...)  btw- a phone interview with a likely functional MD candidate yielded his remark: "Only a neurologist says MS is non-reversible."  Bingo, I like that.  And, I've heard it before.  I'm looking for a reversal of symptoms, and yes, I do believe that is possible, but, to date, illusive.  My trend seems to remain slow progression.

A caution is, I've already seen reputable Naturopaths, over time,and to date they haven't found the key for my health.  They've only given me a few lasting pointers and suggestions.  "Drink Emergen-C, its good for you."  "Smoothies in the morning are good for you."  "Journal about fulfillment, composure." And, universally "I'm giving you this supplement for your adrenals."

The other thing is, naturopaths and/or functional medicine doctors tend not to take any insurance.  (In my experience, the courses of any integrative treatment tend to be long and can incur substantial out of pocket expense, best to find out codes and estimates of how much insurance will cover up front, if you are on a budget.)

Thank you for reading my very first blog about my MS.  I've named this blog "itchyca" after a nickname my caregiver-husband started calling me awhile ago. Is is meant as a term of endearment.  Greg and I celebrate 11 years of marriage tomorrow.  I was healthier back then, but at least I've kept my girlish figure!    I'm quite fatigued today and writing got my mind onto something better.   I will now go and drink an eight oz. glass of filtered water with 1,000 mg Emergen-C .   Back again soon with another installment.