Here is an article fightingmsblog@wordpress found worth sharing. I agree! USING POSITIVE PSYCHOLOGY TO COPE WITH CHRONIC ILLNESS.
A funny thing happened to me on the way to acupuncture. I discovered a strange phenomenon that I had never before heard of, much less expected to be doing that morning and for many mornings since. A few months ago I went to an acupuncturist to begin treatment in hopes of relieving symptoms related to my MS. I don’t have many symptoms to speak of; just numb toes that tend to ache a bit, tingly legs, occasional fatigue and forgetfulness, with the latter two likely attributed to my peri-menopausal state. I didn’t exactly know what my expectations were in getting acupuncture. My symptoms don’t even really bother me all that much. At that time, my last MRI had shown more active lesions even though I had not had an increase in symptoms and I didn’t want to change medications. I decided to explore alternatives to western medicine. I was told by my MS specialist that acupuncture could help to alleviate symptoms but certainly wasn’t a cure. I went with the idea that my MS specialist was wrong; I was hopeful for a cure or at least a clean, healthy MRI to match the way I actually felt. So I went to my 11:00 appointment dressed in yoga pants, having come straight from my 9:00 class. When I walked in, a petite Chinese woman who looked to be in her mid to late 50’s greeted me and said she would be with me shortly. In the mean time she had been collecting money from a few women who trickled in as I waited in the small foyer. I looked around the room and likened it to a sparsely decorated Chinese Restaurant, complete with a palm tree mural and oddly placed cherry wood furnishings. There as also a cello in the corner, which I found interesting. I didn’t want to judge a book by its somewhat tacky cover and so I instead focused on the warm way the people related to the woman who I later learned was Dr. K, the MD who was to perform my acupuncture. When Dr. K was finally able to get back to me, she asked if I was in a hurry, to which I replied that I was not. She then said that she had to teach a class before my appointment because the instructor had called in with a headache. She invited me to join the class free of charge and said it would last about 30 minutes. My first thought was, “Can’t she cure that girl’s headache with some needles or herbs?” But once I got passed my usual skeptical sarcasm, I said, “Sure, why not?” I was quickly cognizant to the fact that I had not the slightest idea as to what kind of class I had agreed to. I had read about the acupuncture on the facility’s website, but not about the other services available and I surmised from some literature on the wall that Dr. K was a Tai Chi enthusiast. I took my place near the other women who were in stocking feet facing a wall of mirrors. Yoga? No mats. Tai Chi? Maybe though I knew nothing about that either. I turned to the woman on the side of me and asked her what class I was in. She must have thought I was strange, standing there, ready to begin a class, yet unsure about what it even was. She said it was Qi Gong, pronounced Chee Gong. I looked puzzled and repeated the words and she confirmed that I heard correctly. Before I could explain to her that I wasn’t a lunatic who had just wandered in, out popped Dr. K in her sweats and on went the Chinese music. The music was punctuated by a loud man’s voice, which sounded like he was grunting words in a rhythmic pattern. I couldn’t understand what he was saying but guessed that the words corresponded with a count that seemed to follow the movements. I kept thinking in my mind how strange it was that I came for acupuncture and yet suddenly found myself in this class, just going with the flow. Thus I was introduced to the ancient Chinese art of energy cultivation and healing, Qi Gong.
After the class Dr. K came around and placed her hand a few inches away from each of the participant’s hands and proclaimed how she could “feel it”. Everyone agreed. She then came to me with her hand test and said, “You, we gotta work on!” and that is exactly what I’ve been striving to do ever since because apparently my blocked energy hadn’t been released in that first attempt. After my acupuncture appointment that day, I was instructed to do Qi Gong every day. I was sold a DVD that featured Dr. K and I made my next appointment. I felt really relaxed from the acupuncture, but felt like perhaps my relaxed state made me vulnerable to any suggestion. I was persuaded into spending money on a DVD that I thought I likely would never even watch, but one day after having the DVD for a couple of weeks I decided to try it. I kind of enjoyed it. I then played it on a weekend away with some of my friends and invited them to participate. The group dynamic seemed to increase the effect; the effect being a general feeling of well being. Since then I’ve explored ways of getting my energy flowing thereby improving my Qi from Qi Gong, to acupressure, to tapping. There is a lot involved when you start to read about Qi and Qi Gong, but it all seems to come down to the basic premise of unblocking blockages in order to allow energy to flow, thereby promoting healing. I didn’t know it at the time but the “feeling” Dr. K spoke of was the feeling of energy exuding from the palms of the hands of the participants. I have since experienced the “feeling” and it’s almost like a magnetic force field. Apparently acupuncture and acupressure work on the same principal of energy. I strive to do Qi Gong everyday, though I don’t seem to find the time. I do know that the more I do it the better I feel. It’s not strenuous and in the various exercises, there is something for everyone. I’ve seen DVD’s for seated Qi Gong, Therapeutic Qi Gong, Qi Gong for back and shoulder injuries; the list goes on. It’s best done in conjunction with meditation and visualization and the web is full of articles about it. Whether you have been diagnosed with a disease or not, everyone can benefit from good energy, so go with the flow!
I am ready to let go of my MS. I have decided I no longer have any use for what I once referred to as a gift. Not all gifts work out. Some are graciously accepted and then stuffed in the closet. Some are re-gifted. Some are outgrown. As for mine, I have decided that it is becoming a hindering excuse; it’s just too easy to play the MS card. Recently I was asked why I might not be ready to let go of my MS. At first I was a little taken aback. No one in their right mind wants to have MS. But later when I thought about the question, it didn’t take long to come up with a short, but sobering list of reasons why I would want to keep such a thing. It’s easy to think of the perks such as enjoying having a little more help around the house or maybe a bit more familial attention. If you dig a little deeper something more profound may come to the surface. The most obvious thing that occurred to me was that my expectations about what is possible for me was lowered when I considered my diagnoses. It sounds ridiculous when I think about it, but unfortunately true. Why would anyone not want to live up to their potential?
I have floundered for years trying to figure out what I wanted to be when I grew up. I spent 20 years raising a family and taking college classes, working towards various degrees. Maybe I would be a teacher; maybe a nurse; maybe a legal researcher. I’ve come close to a few of these aspirations, but in the end never saw a single one through to the end. I’ve always felt insecure and maybe a little guilty about my perceived lack of accomplishments and accepting an MS diagnoses became the perfect out. No one would expect me to push through now. What would be the point?
What I missed in my previous self assessment was that I had already accomplished quite a bit. I had raised a family and made a home. I had amassed great friends through my life. Sure I spent a lot of time and money taking classes that never turned into a career, but it wasn’t a waste. I became educated even if I still lack a few credits. I had been learning to think and was keeping my mind active during a period of time that can be considered mind numbing at times. All the endless hours of child care, and cleaning, were interspersed with being a nutritionist, a counselor, and at times a mediator. I also spent many hours volunteering at school, church and the town library. I was contributing my time and talents to the community. I was keeping my children happy and safe and allowing my husband time to focus on his career by being the keeper of the house.
The careers that I chose to pursue never seemed to work out. For various reasons, finishing my degrees never came to fruition. At times it seemed to be situations beyond my control that blocked my path and I now consider the possibility that perhaps I created the impediments. What I know now is that it really doesn’t matter; not because I was diagnosed with MS, but because I’ve come to the conclusion that none of those things were my destiny. I still may not be sure of what exactly is my fate, but MS is not part of my plan. I definitely want to make that one more thing that I don’t follow through with. I am ready to be healed.
With most journeys come obstacles and mine is no different. I have been silent for a couple of months now because my MS guided journey hit a blip. I started this blog to give other MS sufferers hope and perspective. Suddenly I found myself in a state of hopelessness as the events I spoke of in my previous entry, “The Tangled Garden” unfolded.
My appointment that followed that post didn’t provide the answers I had hoped for. I wanted Dr. K to show me the MRI’s that had been in question, side by side, or at least one after another so I could see for myself what she saw that the “Plan B” specialist did not. My thought was that I would either regain faith in my specialist, or know that it was time for a new doctor. Instead I found myself being shown all my MRIs beginning with my latest taken that morning and going back to the first as Dr. K pointed out the various active lesions. She clicked through the results, pointing to lesions and showing me what my brain should look like compared to what was showing on my MRIs. She quickly pointed out that my latest showed nothing new on my brain, only one new lesion on my cervical spine. By the time we got to the MRIs that were in question, I was already emotional. My husband came into the appointment with me for the first time and somehow it made me feel weaker. I was never really shown what I was looking for, or else I was just too upset by the time it was presented. My husband seemed to think she showed us all the lesions in question. She explained how she was very particular and that she looked at these things all day long thus making her an expert, while it was harder for most to see certain things.
Dr. K seemed defensive from the start of the appointment because she knew I was questioning the “Plan B” discrepancy, yet she stated that multiple opinions were good and that she was on my team wanting for me to have only the best treatment. She said that she would like to introduce me to some of her colleagues, particularly the director of the center at my next appointment, which she suggested we move to 3 months rather than the usual 4. She also explained that the philosophy of this MS center was to knock back the active lesions with Solu-medrol infusions and that nearly every patient at their facility was treated with these steroid infusions and at some other centers, no one received them. She said that the good news about my lesions was that they were active and therefore treatable with steroids. She was strongly urging me to have the infusions, beginning that very day with a second treatment the following day. Once monthly infusions would then be prescribed for the next few months. This new medication was going to be in addition to the daily Copaxone injections.
Of course I was feeling quite vulnerable by that point and when my husband asked why I needed this medication if I didn’t have any new outward symptoms, I became angry, thinking he just didn’t want to have to bring me back to the city again the next day for the second round. I said that I didn’t want to appear to be a difficult patient or miss an opportunity to fight this disease and so the next thing I knew I was having an IV line inserted and Solu-medrol began to drip into my bloodstream.
After my infusion I went to the scheduling desk to make my next appointment to follow-up with Dr. K. It was there that I learned that she was actually leaving the practice. She never bothered to mention it during my appointment. I was told she was leaving at the end of June. I guess that is why she decided she wanted to see me in June rather than July. Being fresh off the steroid line, my mood wasn’t prepared for this news. It’s not that I had a particular emotional attachment to her in any way. After all, she was the one who had caused my tangled garden. I guess I should have been happy. It appeared to be a good solution in that I got to stay at the nationally famous MS center but with a new doctor, thus giving me another opinion. The worst of it though was that she didn’t tell me she was leaving and I now had the Solu-medrol flowing in my bloodstream, the drug prescribed by her, the doctor who was causing me to question everything. I told the scheduler that I wanted to make my next appointment with whomever I was being assigned to. I was no longer interested in wasting my time with Dr. K.
Solu-medrol leaves a terrible taste in my mouth, literally and figuratively. Solu-medrol makes me feel weak, again literally and figuratively. Solu-medrol leaves me with writer’s block. Tomorrow will be the third such treatment as I have a visiting nurse scheduled to arrive first thing in the morning. I am thinking it will be my last.
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.
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.
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.
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.
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!
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…
I received an early Christmas gift on December 6, 2011. It wasn’t a gift in the traditional sense, but it is definitely one that I have yet to finish unwrapping. This gift was delivered in the form of a telephone call from my MS specialist. I had been waiting to hear from Dr. K since my early November follow up MRI. Describing this as a gift may lead you to believe that the phone call delivered some good news; a clean MRI. On the contrary, Dr. K was calling to tell me that she had just read my MRI and that I had two new spots on my brain, “They aren’t in an area of great concern, but we need to consider a new medication for you.” She went on to recite her often repeated list of the various options and before she could continue, I asked her if it was just too soon after starting the Copaxone; maybe I would have had spots in areas that were of concern if not for the Copaxone.
I felt like a junky, defending my drug of choice. My healing euphoria was being challenged. It was the beginning of my intervention. Had I been fooled into a false sense of empowerment, while only shooting blanks? My troop of one was about to have a very serious drop in morale. I was having a hard time paying attention to Dr. K as she spoke, after all, I was in the parking lot of Walmart preparing to meet my husband to buy Christmas lights. She caught me by surprise, though I had been waiting to hear from her since the first week in November and it was now already December.
I interrupted her spiel about the medication choices, and asked her if she could just send me the information. I was sitting in my car; I didn’t even have a pen. My expectations, once again, were a little out of sync with the reality because what I thought she would send was a letter, or maybe an email, with personal and professional opinion regarding these choices. What I really wanted to know was, if she were me, what would she choose for herself? If I were her sister or her mother, what would she recommend. What I received instead, two days later, were three large envelopes delivered by Fed Ex, containing glossy brochures, produced by the pharmaceutical companies, touting the various drug I was to once again consider. I also came home to a message from my insurance company’s home delivery service which was waiting to ship my Copaxone refills. They were calling to arrange it. I guess I needed to decide quickly. I emailed Dr. K to thank her for the advertisements; the information I could have just as easily obtained on the web; the glossy ads showing smiling paid spokes-MSers walking through wheat fields unassisted. I also needed to ask her if I should refill my medication for at least one more month while making my decision. She quickly, immediately in fact, replied in all capital letters: DO NOT REFILL YOUR COPAXONE. Was this really happening? If the MRI was so dire, why did it take her a month to call me? She apologized for not calling sooner. She didn’t know I had rescheduled the MRI because no one had sent her the results.
You may still be wondering why this disappointing phone call is being described as a gift. Up until 3:07 pm on December 6, I had, for lack of a better phrase, been feeling pretty groovy. I was the master of my domain. A soldier with a perfect kill rate. I had been giving myself daily injections, not having any noticeable side effects, still not having finished informing all of my family, when just like that, I’m told it’s not working. I was more devastated from that phone call, than I was the day I was diagnosed. But here is the gift I began to unwrap on that day; I finally faced up to reality and I told my youngest son I have MS. I began to talk about my MS with my husband. I felt as though I was finally shedding the last bits of denial that I had been clinging to despite the comfort it was affording. It marked my first effort at truly seeking out alternative treatment options beyond the medication I had been banking on. I needed to take back control and the call was a gift because it motivated me to do that.
I called my MS specialist and told her I wasn’t changing medications. I was going to stay on the Copaxone for a while longer, and try other means of amplifying its effectiveness. After researching my options I decided that the cons of the other medications far outweighed the pros. Dr. K recommended Tysabri or Gilenya; she wanted to take an aggressive approach. I couldn’t see making myself sicker to prevent that which may never come, or that which may possibly be inevitable. It was at this time that my daughter happened to mention that she saw a YouTube video about dietary changes used in controlling the effects of MS. I watched the Terry Wahls lecture and immediately decided to give the diet a try. I’ve never eaten better in my life, and while it’s too soon to tell, I really hope it works. It makes me feel very “clean” and clear headed, though it could be argued that it’s a combination of all the other changes I’ve incorporated. I made an appointment for acupuncture and continue to go for treatments once a week. I found a yoga class that I now participate in twice a week and I simply love it. I began practicing Qi Gong everyday. I started doing things specifically targeted towards a positive focus for healing. I am not ready to throw medical science and pharmaceutical research out of the window, but there is also science behind the nutritional benefits of an Multiple Sclerosis diet. There is science behind the benefits of Vitamin D3 supplements; I now take 4,000 IUs per day. My acupuncturist is a medical doctor and she truly believes in the merits of Chinese medicine. I am beginning to see them as well. The stress reduction value of yoga has long been established. My mind became open to all these wonderful new concepts of energy healing; ironic seeing this disease is one in which your brain shrinks and mine seems to be growing. The gift that I received with that December phone call is still being unwrapped. I am relishing the tearing open of my gift, with the anticipation that the best is yet to come.