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.