Please Don’t Make Me Om

Tags

balance, MS, Yoga

The Yoga Paintings of Jan Hyde

I had always disliked yoga. I actually really loathed yoga. I just didn’t have the yoga personality. I had things to do, people to see, places to go and you mean to tell me I need to cover myself in a blanket and do Shavasana?  If you have never practiced yoga, Google it. It’s the corpse pose. I guess I didn’t have an appreciation for lying still in a corpse-like posture while listening to meditation music and seagulls.  And the mere thought of oming in a room full of people made me want to snicker because it just seemed so silly.

I first tried yoga in a class that was held above the garage of a woman my sister knew. It was a nice studio and Mary seemed like a nice person, but each week when my mom, sister and I went, I felt more and more stressed. I found that I just couldn’t stand the slow pace; the quieting of the mind. I did the 6 week session and declared that yoga just wasn’t my sport. I tried it one more time at the local Y and the instructor showed up wearing jeans to teach the class and she would actually fall asleep, complete with loud snoring, during Shavasana. The only time she seemed like a yoga “teacher” was the time that I sat silently while everyone else omed their three oms; one to the room, one to the earth and one to the universe. She would look at me and sternly say, “let’s try that one more time.”  Please don’t make me om!

That was about 8 years ago and I had the idea in my head that yoga actually made me angry.  When my MS specialist told me that yoga was a very good exercise for people with MS, I still avoided it for several months. On one of my last rides home from Pilates, I happened to drive by a studio that just caught my eye.  It was an old mill building with a brook running beneath it.  I went online, found the website and saw that the schedule was very flexible. There was no commitment to take a set amount of classes. My friend S had been trying to get me to revisit yoga and when I told her about this studio she tried a free class. She loved the place and assured me that there was no oming involved.  I decided to give it a go.  It was a large, but not too large, stylishly Zen studio, comfortably warm and dimly lit.  I immediately felt comfortable there.  The first class I tried was a Vinyasa Sundown Flow and it was very physical.  I felt challenged in that it required a lot of upper body strength and the instructor moved rather quickly from one pose to the next, thus the flow aspect.   It was nothing like any yoga class I had ever done and while maybe that class was too physical for a beginner, I bought a five class pass and started trying different classes twice a week.

One of my favorite classes is the beginner class on Monday mornings and I find it to be a fantastic way to begin the week.  On sunny days, the large windows that wrap around three sides of the studio, provide yoga mat sized sunny patches that make me feel like a cat in the sunshine.  The instructor is so warm and engaging, I would probably om while standing on my head if that is what she asked of me.  While that was probably an exaggeration,  I have been known to now om on occasion and it no longer feels wrong to me.  Shavasana has become my favorite part of class.  Last night I went to a gentle yoga with mediation class and the instructor went around the class during this quiet time, massaging each students head and using aromatherapy oil to give a blessing on our foreheads.  It felt amazing to have my MS rattled head pampered in such a way.  I have also participated in a work shop that was 3 hours of restorative poses, which essentially was an afternoon of creative Shavasana and was simply amazing.

I have caught yoga fever and I’m not looking for a cure.  Whether or not you have a specific health issue, yoga seems to be an all around whole body fitness routine that not only engages your physicality, but also your mind.  As anyone with MS has experienced, closing your eyes while standing straight with arms at your side results in an automatic swaying of the body, but yoga has improved this for me personally as it is excellent for challenging your balance.  I highly recommend it and suggest that you don’t give up before trying it at several studios to find your comfort zone. May the pure light of your spirit shine and guide you through each day… Namaste.

A Tangled Garden

Tags

Copaxone, MS, Multiple Sclerosis

Once a seed of doubt is planted, it inevitably grows into a tangled garden of questions.  If left untended, a twisted jungle of anxiety is liable to follow.  I chose to tend the garden.

The Tangled Garden by J.E.H. MacDonald

I wasn’t sure whose assessment I was hoping to be correct, which may seem crazy on the surface.  If Dr. B, the “Plan B” expert’s opinion that there were no changes in the two MRI’s was correct, then that would mean that my Copaxone was working.  Great news in and of itself.  However, if this were the case, it would also mean that my MS specialist was mistaken; lying? Both are uncomfortable answers.  It would be easier to deal with it being an error on Dr. B’s part, but I also felt that if he were wrong, then I wasted nearly two months waiting for an incorrect assessment.

The day after Dr. B’s report arrived, the case manager from “Plan B” called and asked if I had any questions.  Did I ever.  I explained the discrepancy in the most looming question posed to the expert and she, of course, understood my concern.  She said she would speak to her director, who also happens to be on the board of directors for my MS Center’s Hospital.  She called me back and assured me that they would resubmit the question to the expert for reassessment. She told me that “Plan B”‘s director emphatically stated that the radiologist who read my MRI at the facility I go to, is the leading neurological radiologist in the country.  I couldn’t help but replay in my mind the fact that Dr. K, my MS specialist, had initially failed to include the November MRI in the records that were released to “Plan B”.  I was beginning to imagine a scenario whereby Dr. K was pushing for a medication switch for some kind of personal financial gain, or to get more people on Gilenya to improve its market share.  I really felt like I was becoming paranoid.  Here I was trying to ease my mind by getting the second opinion and it instead created a convoluted conundrum.

A complicated convoluted conundrum was the last thing I needed.  I was in my second week of acupuncture treatments, my fourth week of yoga, my eighth week of my diet; I was doing all the right things to balance my Qi, to calm the “monkey brain”, to feed my damn mitochondria and the medical community was just not cooperating.  I had no choice but to, once again, wait it out and a grueling three weeks later, “Plan B” emailed me the addendum to my report.  I was almost afraid to open the email.  I wasn’t sure what to hope for.  I had recently seen Dr. W, my primary care physician, for my 6 month check up and I broke down in tears as I relayed my saga to her.  We discussed the possibility of changing specialists, which given the fact that I was being cared for at one of the leading facilities in the country, seemed counterintuitive, but I felt that I had lost trust in my specialist.  At the time of this appointment, the addendum had yet to arrive.   Dr. W thought we needed to wait for that report. She suggested that I needed to go over the MRI results with my specialist at my upcoming appointment and share with her my concerns before jumping ship.  I finally opened “Plan B”‘s addendum and slowly read  Dr. B’s report which reiterated that he did not, in fact, see any change between the June MRI and the November MRI.  My appointment is in 5 days.  I have blisters from all the gardening.

Planting a Seed of Doubt

Tags

Copaxone, MS, Multple Sclerosis

Upon learning that my Copaxone was potentially shooting blanks, I decided to call a relatively new company, that I will not name, but instead call “Plan B.”  It is a benefit that many large corporations are providing for their employees as a type of assurance that your health care professionals are on the right track.  My husband’s company is one that provides it and so I thought it appropriate at this particular crossroad to utilize the benefit and see what they would recommend for a new medication.  A phone call begins the process which involves an intake call, with a registered nurse, where you provide a health history and list of facilities and practitioners who have had you in their care up to this point.   You then have to sign a release in order for Plan B to collect your records, which are then sent to an expert in the field that applies.  A report is written and delivered to you within a few weeks.

I was very organized when the nurse called me.  They make an appointment with you so that you can have the information ready and I had my list of doctors, addresses, phone numbers and dates all prepared.  My biggest questions included whether or not their specialist considered 9 months long enough to determine the effectiveness of Copaxone, whether the changes between my June MRI and November MRI, warranted a change in medication, and also if they had any opinion on using alternative therapies, like diet, exercise and acupuncture to treat multiple sclerosis.

This, of course, was just one of the plans of action I took after Dr. K’s phone call telling me I needed to switch medications.  In the mean time, my husband and I poured over the brochures that described the various medications, he on his side of the bed, me on mine, one moment certain what to choose and then changing our minds sometimes after a few minutes, sometimes a few days.  I just couldn’t pick my poison.  Dr. K said there was no rush, but having stopped my Copaxone refills shipment, I knew that in 19 days I would be naked, unarmed. This didn’t sit well with me, so I knew a decision needed to be made.  I wanted to wait for the Plan B report, as it seemed prudent to see what they had to say in the matter before making any decisions.

The wait was excruciating. I felt as though I could hear the clock ticking, mocking me.  And then it occurred to me; what is the rush? I decided to call Dr. K and tell her I wasn’t ready to switch.  I wanted to wait a full year before making the decision.  That was only 3 more months, so could we just reorder my refills and wait just a bit longer? I wanted to get my Plan B report.  I wanted to try my new diet.  I wanted to get passed Christmas.  I just wasn’t ready to decide.  It was a relief to make that call, but I was still waiting for Plan B and it seemed to be taking forever.  At one point the case nurse called to clarify that I had an MRI in November because it had not been sent along with the rest of my records.  I was more than certain that I indeed had an MRI in November, as this was the one that was the crux of my dilemma; my whole reason for calling Plan B in the first place.  She apologized, though my MS specialist should have been apologizing for not sending the requested material, and the Plan B nurse said she would be sending my case to the expert as soon as everything was collected.  It was interesting to me that it was omitted.

When finally I received my secure mail report in late January, I was nervous and excited to read what the Plan B expert had to say.  I saw the email on my phone but waited till I got home to read it.  I wanted to print it out and thoroughly take it in.  I darted up the stairs to my computer and pulled up the report.  I printed the 10 pages, hoping to not run out of ink and took the report to the couch.  I proceeded to read my intake interview and the remarks made by the expert specific to my diagnoses and treatment.  The expert, Dr. B, confirmed the diagnoses, which I wasn’t questioning.  He confirmed the choice of Copaxone as being a good course of action to treat relapsing remitting MS and confirmed that my primary care physician and subsequent practitioners took the necessary steps in testing to eliminate other causes for my symptoms.  This was all pretty much expected, but what I read somewhere around page 9, was not.  The Plan B expert stated that there were no changes noted between the June MRI and the November MRI report.  What? I read it again, the second opinion expert did not see any changes between the June MRI and the November MRI.  I shouted it out loud to my husband and he was ecstatic.  “That’s great!”, was his response. “That’s great” was my response as well, though my intonation was a little more incredulous than my husbands.  While he was looking at it as me not having had new lesions, which would be, in itself, very good news, I was looking at it as, somebody is mistaken; thus a seed of doubt was planted.

Diet Soda?

Tags

Aspartame, Multiple Sclerosis

I have never been a fan of artificial sweetener, although I believe that I had an exacerbation after drinking diet soda once about 28 years ago.  I labeled it a migraine. Something else to ponder…

http://www.whilesciencesleeps.com/

Food As Medicine

Tags

Copaxone, Mark's Daily Apple, MS, Paleo Diet, Terry Wahls

Grilled Salmon, Roasted Cauliflower, Roasted Carrots, with Spinach and Kale Salad

I wish my Whole Foods bill could be covered by insurance.  Then again, that has been my sentiment about a lot of things that I believe can help my medical condition, including a lovely restorative spa vacation.  In early December, I received the disturbing news that my medication, which is covered,  wasn’t working as well as my MS specialist felt that it should be.  This was very disheartening because I had put so much trust in the Copaxone.  From the day of my first injection, I really thought everything would be fine.  I had been on it for 9 months already and hadn’t experienced any symptoms, but my MRI showed new lesions. I suppose all good things must come to an end and now a seed of doubt had been planted.

As I’ve said before, timing really is everything.  Just days before that dreadful call, my daughter had sent me an email, asking if I had ever heard of Terry Wahls and if I would consider altering my diet to help prevent MS relapses.  I told her I hadn’t heard of her and that I really had pretty good eating habits already.  It had only been a couple of days and I hadn’t yet looked into her suggestion, but after receiving the call, I needed a new plan. I Googled The Terry Wahls Foundation.  I found several snippets of videos at first, and books for sale.  I wanted free information, I didn’t want a scam.  Why I blindly bought into $50,000 worth of Copaxone, but resisted spending $38.00 on a book is truly a mystery to me and I’ve since splurged on a couple of great books.  One of the video snippets mentioned eliminating grains, refined sugar and processed foods completely.  So that is where I began, no grains or sugar, to the extent of reading labels on everything, which is pretty simple when you eliminate the next thing, processed foods.  When is the last time you had to read a label on a carrot?

I traded my coffee, with its no fat half and half, which is loaded with hidden sugar, to yummy chai which is delicious black. Both contain caffeine so there was no withdrawal. It wasn’t very difficult even with the holidays fast approaching.  My husband’s work party was days away and I had already ordered the stuffed chicken, but my plan was to eat around the stuffing, skip the tortellini in the soup and eschew the bread basket.  The party was a piece of cake (grainless of course).  When the appetizers came around I chose only the skewered chicken and the shrimp; I passed on the stuffed mushrooms and fried breaded zucchini.  The woman beside me was sorry she ordered the vegetarian meal as soon as she saw my chicken; we traded and I fell in love with the healthy alternative.  It was a beautiful portabello mushroom stuffed with butternut squash, walnuts and cranberries.  I wasn’t missing anything and I danced all night in my heels!

Beet Salad

Within the first 5 days after eliminating grains, sugar and processed food, I dropped 6 pounds.  I didn’t change my diet as a means to lose weight, but I must say, knowing that I previously carried 6 pounds of  grain induced bloat gave me the feeling that I was onto something.  That weekend I found the Terry Wahls TEDxIowaCity YouTube lecture,  http://www.youtube.com/watch?v=KLjgBLwH3Wc, which describes in detail her nutrition plan. That video has since gone viral.  I watched it twice and took notes about the food that Dr, Wahls used as medicine to feed her mitochondria. She went from being wheel chair bound, to riding her bike to work everyday after researching and putting into practice the nutrients involved in sustaining a healthy brain.  I have already posted the lecture link on this site, and if you haven’t watched it in its entirety now is the time to do so. Where I had previously focused on only eliminating, I was now learning what I needed to add and I was seeing that it was even more important than what you take away.  The concept of focusing on what you are gaining, rather than what you are giving up began to become embedded in my mind and really motivated me.  That and the prospect of preventing my lesioned, black hole ridden brain from shrinking away was all the motivation I needed to go straight to the nearest produce department.  In a nutshell, Dr. Wahls suggests adding 9 cups, though I have heard it can be 6 for women, of a combination of leafy greens, sulfur rich vegetables and brightly colored fruits and vegetables.  She also added grass fed meats, wild caught salmon, seaweed, and organ meats.  I have adhered to all but the organ meats and seaweed, which is proving to be more difficult to enjoy than I expected.  While the 9 cups of greens and colorful vegetables are a daily need, and one in which I have come to really enjoy, the organ meat and seaweed is supposed to be once a week, seaweed for its iodine and organ meats for the many nutrients they provide. I am not a nutritionist, I still need to research either a way to make these last two things palatable, or supplementally available to me.  I buy grass fed meats when the stores I shop carry them, but am not a purist at this point.  And wild caught salmon seems to always have bones, where the farm raised do not, but I’m a work in progress.   All I can say is that I have never eaten better.  Recipes are not really necessary because I eat whole food, unadulterated beautiful whole foods seasoned with fresh herbs and olive oil.  My salads are amazing and the combinations I make are limited only to your imagination or produce drawer.  I have lost a total of 15 pounds and as bratty as it may sound, I am feeling a little too skinny, but it’s not for lack of eating as I definitely get my 9 cups and then some, every single day.  If it sounds like a lot of food, well that’s because it is.  Most people say that breakfast is the hardest habit to change, but I have come to enjoy my giant bowl of raspberries, blueberries, strawberries and blackberries, accompanied usually by an egg.  We are all creatures of habit; just make the change and it will become your habit.  There are many sites that are dedicated to grain free diets.  Modern Hunter Gatherer, Paleo, Caveman, they are all based on the same principals and a quick Google search will give you access to recipes for grainless muffins, and breads if you need a fix. My husband has learned to make the most delicious pancakes using almond flour and buckwheat flour, all grainless, and when he releases that recipe, I will share.   A really great resource for health in general and grainless diet in particular is http://www.marksdailyapple.com/.  When I came upon this site, one of the first thing I saw in its archives was a link to the Terry Wahls lecture; I had come full circle. I don’t feel deprived in any way, although on occasion I think about pizza. The idea of preventing MS relapses surely outweigh any craving I may have, so staying the coarse hasn’t been too much of a chore. Grainless or brainless…