Hope

"Yoga teaches us to cure what need not be endured and endure what cannot be cured." B.K.S. Iyengar

Today, one of my closest friends shared this video with me. Please watch it:

http://www.youtube.com/watch?v=qX9FSZJu448

It is truly amazing to me what the human body is capable of and what it will adapt to. The last year of my life has been the most physically painful year of my life. I, for a long time, did not understand what was happening with my body, or what it was trying to tell me. My pain seemed to be sporadic and so intense. So I began a journey to find relief and connect with my body in a way that I may understand where that pain was coming from. 

Here, a year later, I am still on that journey. I have learned so much about my body in the last year. I have become more in tune with my alignment and controlling every appendage, muscle, and fiber in my body. It is not something I have mastered, but it is something I have learned that I am capable of doing. It takes so much concentration, power, and focus to work your pinky toe in a way that will support your leg, knee, and hip. I can feel my misalignment now. I can close my eyes and begin to work on centering my body and trying to eliminate the 8 degree curve in my lumbar spine. I can work the four corners of my foot and work on lifting the arches of my foot. I lift my knee caps, and release my hips. I pay attention to my body and it communicates with me in a way I never knew was possible.

In so many ways I have seen Iyengar yoga a being the light guiding me through the dark, long tunnel in front of me. My practice is my most important medicine these days. I have been able to use yoga to work through some of my pain and prevent it from getting worse. I have been blessed with an amazing yoga teacher named Peggy. She has taken me under her wing, and not only given me the physical work of Iyengar but the emotional support of a true friend in a tough time. Her skill set and teaching methods are amazing. For the first time in my life, I don’t just feel that I am doing yoga, but becoming yoga. I am the practice. I am the line of communication between my physical being and my mental understanding. Peggy is the person who helped me discover that line of communication, how to manipulate it, and understand it. It also has brought me closer to another person in my life, Rusty. Rusty has, much in the same way, worked with me to help discover my body and work with it. Rusty and I work together to educate each other in what we have discovered through our practice and create a stronger understanding in the body. She has listened to me as I processed through the emotions of the diagnosis. My journey has brought me to a point in sharing, learning, and support with these women that I could not be more grateful for. 

I have learned that yoga is so much more than how flexible you are, or how far you can push your body. Yoga is the understanding of your body and knowing how to help it reach its greatest potential. Right now, my yoga practice is about strength. I actually have too much movement in my hips due to the inflamed ligaments, and I have to work to get my body to control them. I need to have the strength to keep my hips in alignment and control their movement. I think there is this assumption that you should be able to do some crazy, flexible, double-jointed move if you practice yoga regularly, but that is not always the case. That may not be how your body wants to or needs to communicate with you. My body needs me to speak in strength… in so many ways.

So, my practice will be strength, Strength in my physical body. Strength in my mental being. Strength in my emotional state. Strength for the long battle ahead… Once I have built a little more strength, I will work in the flexibility. The flexibility to keep movement in my body. The flexibility to adapt to what my physical body needs. The flexibility to know I will go through different emotions with this process. My practice will be to listen to my body, let it know I care, and that I will adapt to what it needs.

Take the time to do something for you. Listen not to only to what you want, but what your body needs from you, and find the strength to beat the odds. Only you can determine your own outcome in life. Don’t let anybody, not even a doctor, tell you something is impossible or permanent. Use what they say as a guideline to how you operate, but determine your own outcome by NEVER GIVING UP HOPE.

all the best,

 Amanda

Movement

The Definition of Movement is...

1. The act of moving; change of place or posture; transference, by any means, from one situation to another; natural or appropriate motion; progress; advancement; as, the movement of an army in marching or maneuvering; the movement of a wheel or a machine; the party of movement.
2. Motion of the mind or feelings; emotion.
3. Manner or style of moving; as, a slow, or quick, or sudden, movement.
4. The rhythmical progression, pace, and tempo of a piece.
5. One of the several strains or pieces, each complete in itself, with its own time and rhythm, which make up a larger work; as, the several movements of a suite or a symphony.
6. A system of mechanism for transmitting motion of a definite character, or for transforming motion; as, the wheelwork of a watch.

Read more at http://www.brainyquote.com/words/mo/movement192238.html#4h1RodA0fhU6at8g.99

Life is about movement... It is measured, analyzed, and recognized by movement. Movement in growth. How one is emotionally moved. Where we move. How fast we move. Moving up the corporate ladder. Trains, planes, boats, automobiles... Run, skip, fly, walk, fall, crawl, twist, turn, throw, fling, crash, jump, roll, swing, swim, glide... It is how we live. We move. We make a move. We are moved.

My disease, like life, is about movement... and measured in movement. When I met with my Rheumatologist, he told me to "try and touch my toes" (which I did... thanks, yoga :) ) and he made too small, black dots on my bare back. He measured these points, had me stand, and measured again. My disease will be measured in my movement, or... my loss of movement.

As one grows older, they expect to lose range of motion, and to lose flexibility. It is a part of life and an effect from the hands of time. Me... I will be always thinking it is a sign of fusion. I guess there is some mean on which they measure regular loss of mobility and progressed loss of mobility... signs that the disease has advanced and fusion is an issue. As for me, I make a point to "try and touch my toes" everyday... to make sure I still can, to keep it that way as long as I can, and to appreciate my ability to do so because it may not always be that way.

I asked my Rheumatologist what activities and level of excursion I should avoid with this disease. He told me that he believed his patients should live their lives and be active in a way that contributes to their lives. He stated, and I quote, "So, if you love to ski... then ski." Thank God. That was a close one... He did tell me that this was not a good time to pick up new, high impact activities, but if there was something I loved to do, I should do it. 

I skied for 4 days straight this weekend :) I would like to report that nothing phased me and I tore up the mountain like Peekaboo Street, but that wasn't quite my experience... It was actually very hard to mentally overcome what was going on with me and just have fun. I was very protective of myself and of my hips/spine. I didn't want to fall and I didn't want to aggravate my inflammation. Well, its hard not to. Skiing is an amazing sport, but a hard one that uses a lot of hip and leg power. I had some very sore moments and extremely stiff mornings. I kept wondering if the rest of my life would always feel this way... If I would always be sore and stiff in my very best and debilitated at my very worst...

I refused to let that be the answer for my mini-vacation. I listened to my body... took it a little easy and pushed it a little harder when I felt secure on a groomer. I iced, I hot tubed, I stretched, and I over came the worst of my pain. I skied all 4 days.

Movement, I have learned, is essential to the very core of my being. I am a foot tapping, dancing in front of the mirror, run up the stairs, play with the dogs, hike a mountain, kick boxing, swimming, skiing, cycling, push myself further, take a walk to cool off, moving kind of a girl. I am a mover and a shaker. This disease may change how I move, but I won't let it change the fact that I do move. I found more movement to express myself in and aid in my healing through Iyengar. It has helped me grow, and growth in itself is just another movement. Movement onward and up.

I appreciate the movement we create in this world more now then I ever have before. Just think... you, like me, may hate to run.... but imagine if you could never do it again... Movement is an expression, an outlet.... and nothing should be able to take that away from us. I have learned more about the tools I can use through movement to save my mobility. Movement truly will be my life, and now my greatest method in healing. Don't waste your ability to move... Use it, enjoy it, cherish it.. because no matter who you are, if you take for granted that you can move and don't take care of your ability to move... you will lose it too.

XO
Amanda

Starch Free = Symptom Free???

Before I get started with another thought on AS... I am humbled and overwhelmed by the response I have gotten from creating this blog. I feel truly blessed to have so many people, from so many places, and from so many different times in my life reading this, supporting me, and letting me know that have at least some interest in the battle and the disease. Honestly, the blog is a selfish thing :) I can control how I deliver information to those around me, and rather than hide from it, I have decided to accept it and take it head on. Apparently, I am not alone in this war. So, Thank You.

Okay... so starch free. I am NOT on a "diet." Well... in the traditional sense of what the word is thought to mean. How about this... I am not eating less, or clean, or carb-free, or juice cleansing, or whatever the hell people do to lose weight. I have found that this is one of the ways that I started opening up to many of those around me about the disease... I had to explain my lack of starch. I don't blame them really... If I saw me, eating a salad... with fresh cut up veggies (and maybe a side of fruit), for a few days at lunch, I would think "Damn, that looks unhappily healthy... she must be on a diet." I am not sure why, but people almost seem to respond to you defensively when they think you are on a "diet." For example, "What is that? Rabbit food?... Are you on a diet or something?" Hey Mr. Hostility, are you upset that I am eating healthy and taking care of my body? Maybe those people may feel guilty about indulging in the delicious, greasy goodness of food, rather than eating my "rabbit food"... Or maybe they are thinking "Yo, skinny girl... don't try to lose weight, okay? You'll freak us all out if you look boney..." I like this option because I think it is a round about way of complimenting me, and well, I'd like to think people are good natured at their core. :)

The point is... No, I am not trying to lose weight. I am trying some natural methods to decrease my inflammation so that my body doesn't create a "bamboo spine." Fused spine or giving up starch? As sad as the latter may be, it doesn't compare to how sad the first option could be... and how much more I would lose. SO, I am trying to go starch free. Do you have ANY idea HOW MUCH STARCH is in the foods we eat on a daily basis? Its used as preservatives, as thickeners, as grains, and as whatever other weird thinks they do to food when they process it (that I don't understand)... It is in SO MUCH. Starch is an epidemic... how will your body tell you about this epidemic later in life? Something to think about...

Anyways, there is some (little) research to indicate that this diet can be helpful to reducing inflammation…

THE LONDON "AS" DIET

Low starch/high protein diet for ankylosing spondylitis patients. It is thought that in some cases a diet low in starches found in flour products and potatoes, and high in proteins and vegetables is of benefit for AS patients. Ankylosing spondylitis is considered to be a form of "reactive arthritis" following an infection of the terminal ileum and ascending colon by the bowel microbe Klebsiella. Specific anti- Klebsiella antibodies in AS patients have now been reported from 17 different countries: England, Finland, Germany, Sweden, Netherlands, Scotland, Spain, Belgium, Slovakia, Japan, China, Australia, Canada, USA, Mexico, Argentina, and Turkey. Over 95% of AS patients possess the HLA-B27 antigen whilst it is present only in 8% of the general population. The Klebsiella microbe has molecules which resemble HLA-B27 and this is the reason why AS patients generally belong to the HLA-B27 group. In addition, the pullulanase molecule of the Klebsiella microbe crossreacts with type I collagen found in tendons and bone and also with type IV collagen found in basement membranes of retina and uvea, thereby explaining the pathological sites of AS.

When one eats large amounts of starchy foods (bread, potatoes, cakes and pasta), the Klebsiella bacteria feed on it, multiply and then the immune system of the patient makes antibodies against the microbe and some of those antibodies will also have activity against HLA-B27 and against collagens in the spine and uvea, thereby acting as tissue damaging autoantibodies - hence the need to ABSTAIN from these foods. Since the mesentery of the bowel is attached to the front of the lumbar spine, it is inevitable that BACKACHE in the lumbar area will be a feature of AS. One simple way of reducing this inflammation is to reduce the daily intake of STARCHY FOODS. However, consult your doctor before going on the diet. The higher the intake of starchy foods, the higher the inflammatory activity. You can eat SMALL amounts of starchy foods but if the AS is very active, it is best to eat a lot more protein and vegetables. However, if the AS is inactive, the diet can be less rigidly followed.

Essentially, it means REDUCE BREAD, POTATOES, CAKES and PASTA and INCREASE the intake of MEAT, FISH, FRUITS and VEGETABLES.

Source (and more information): http://www.kickas.org/londondiet.shtml

So, that is the journey I am on now. I am challenging myself to be aware of, and eliminate, all starch. I have found starch in salsas, soups, canned vegetables, lunch meats, and a few other things I thought were "starch free." Its a learning curve, but it has made me aware of the amount of starch we take in on a daily basis... especially with those hidden starches, a few of which I just mentioned... 

There are even starchy fruits and vegetables that are better to avoid, and most beans and legumes fall into this category as well. There are even starchy nuts... peanuts = no, no... and I thought peanut butter would be a live saver... well, on to Almond Butter! Just think about eating like a cave-man and you have come pretty close to my new diet ;) Thursday will be 2 weeks of starch free (with a few hiccups- such as salsa, lunch meat...), and I am dedicated to staying on the diet for 4-6 more weeks before reintroducing starch and noting the differences in my symptoms. Avocados, chocolate, and wine are my favorite foods these days :) I have  had a cauliflower crust pizza (better than expected) and steak with gorgonzola butter in the last 2 weeks... it could be worse ;)

For more information on what foods to eat and avoid: http://www.kickas.org/asfood.shtml

I am planning to meet with a nutritionist for an even better understanding of starch and the role it may be playing my disease. My Rheumatologist told me that he has heard of the diet and that he has had some of his patients try starch free, gluten free, etc. He told me that some got benefit from these diets, but many didn't and that there was no accepted or fully researched diet proven to reduce symptoms in Spondyloarthropathy or AS. He told me that there was no harm in trying and I should, but if he was me... he wouldn't want to stop eating gluten and starch for no reason. Agreed, Doc. Agreed. So, this is the trial period... I will let you know. Many people swear by starch free diets on the kickas.org website (this is a forum for people with the disease to start discussions and share information). Maybe its just that the disease is so unknown and under researched that they dont have enough information or funding to find out if the diet is something that works for most AS patients... As for me... I am scared of drugs that may increase my risk for cancer and becoming dependent on them to change my life. I want control over this disease and I want to dictate what may or may not help my symptoms. I understand that many days this may not happen, but if I can just find a couple things that work in reducing my symptoms... my pain, that will be the start of my fight in controlling this thing. I have AS, but it does not have me. 

Until next time kiddos...

Amanda

Ankylosing Spondylitis, the journey has begun...

Sometimes I wonder at what point our lives really begin. Is it when we are born? Is it when we decide to change? Decide to be happy? Is it when we move on? When we grow from something tragic? I feel that these are all moments of new life beginning within. A moment in which we have paved a new path in which to live our lives. I am at one of those points in my life, a point in which I am beginning a new "life." A point in which I will have to live differently than I once did or ever thought I would have to.

I have a spondyloarthropathy thought to be Ankylosing Spnodylitis. About a year ago, I started having intense and reoccurring pain in my hip area. That's, I guess, where my journey and this story really begins. I felt sharp pain that was making me limp when I walked. I went to the doctor and he told me that my hips were out of alignment. He gave me an adjustment, and while there was still some pain from muscle strain, VIOLA! I could walk again. Well, it didn't end there. For many months, I was in and out of his office with this problem, and the pain was becoming more intense each time I went. He believed that I lacked muscle symmetry in my back and core. I began doing a special type of symmetrical yoga called Iyengar. To this day, Iyengar has been a life saving and enlightening practice for me. Despite my dedication to the practice, I still had pain and it was becoming more frequent and severe. I visited a couple Chiropractors, found out I have an 8 degree curve in my low back, had to switch doctors due to insurance, and eventually started Physical Therapy. I had done PT before for my ankle. My PT, after evaluating me, determined that the pain was coming from my SI joint. I began exercises in hope for pain relief and to get back to my active lifestyle. I was told by my PT, my doctor, and later a specialist that the pain was from inflammation or "dysfunction" in the joint. I asked all of them what caused this... I got the same answer... Pregnancy (the hormones during pregnancy can cause the SI joint ligaments to loosen and then fail to tighten back up after a baby is born), infection, or traumatic injury (such as a car wreck). They also see cases of problems in the SI joint in older women, another issue with hormones. I was confused... NONE of these seemed applicable to me. I had a ski fall in which I strained my MCL 9 MONTHS prior to any of the symptoms in my SI joint. I was told this could "possibly" be a delayed onset from that fall. I told them all that I had increased my running and activity for a Triathlon I was training for. I asked if that could play any role in this pain, in this injury as they had deemed it most likely to be. I received another "possibly." I thought that I was active and I had probably pushed myself too hard at some point, just couldn't pin point when... However, I always questioned how friends of mine who seemed to push harder then me didn't have this same response.

Well, I continued my PT and after 4 months, I was frustrated that I wasn't seeing more results. I continued to have flares, a little less frequent then before PT, but they were still happening. The pain was getting worse when I did flare... My PT and I couldn't pin point what was causing the flare and she began to wonder if it was, in fact, a mechanical problem. One day my pain became so severe I could not sit up, stand up, walk, move, roll, or create any movement without the most intense pain I have ever felt. My husband had to stay home from work and I had an emergency appointment with my doctor. She gave me a minimal adjustment and ordered an MRI. She said that it was time to get a better idea of what was going on. I had an MRI of my lumbar spine and my sacrum. The MRI reveled a bulging disk in my low back, and inflammation in BOTH my SI joints. All of the sudden, our course of action was different. My doctor sent over an order for blood work explaining that we had to rule out some other options such as RA and "other inflammatory diseases." After waiting, for what seemed like years, I got the results. I have a rare antigen in my blood called HLA-B27. This antigen "is consistent with Ankylosing Spondylitis" and it was time for me to see a Rheumatologist. I don't know if you know this, but Rheumatologists are very busy people and in early December, they were scheduling out until March. However, after reviewing my file, the doctor deemed me "HIGH priority" so I was on a wait-list and got in on January 8th of this year.

I am currently on an anti-inflammatory and hoping that this drug will improve my symptoms by 90%. If I can maintain this, then I stay away from biological drugs (for now) that attack my immune system. My immune system is what is causing this inflammation in my SI joints, and if it AS (as we believe it to be), then it will work its way up my spine. The body responds to the inflammation by fusing the joints and the spine together. I must get the inflammation under control so I don't lose the mobility in my hips and spine.

The next step is to meet with a GI and rule out some conditions that may be linked to my symptoms and be a little more sure of the path of proactive treatment for AS. What is most important is that I keep movement in my everyday life and do range of motion exercises everyday. I am working to make this second nature every morning and every night. My goal is to bring awareness to this disease and let those closest to me know that I am not going down without a fight. I am a fighter and I like to beat the odds. What better chance to beat the odds then this? Fusion happens in most cases with this disease, but there are so many drugs they have found within the past few years that seem to be making a difference and are, hopefully, changing the long term effects of this disease.

I don't want your pity, your fears, or your sadness. I want your strength, your support, and your desire to learn about a disease you or I would have never known existed if I hadn't had it happen to me. This will be a scary and emotional journey for me along the way. Don't tell me "It could be worse" or that I "will be okay." Tell me you are here for me and that you care enough to know about the battle. Challenge yourself to bring early awareness to others who may be fighting this. The earlier its detected, the more likely fusion will be fought off and kept to a minimum.

Now you know. I debated for a while how public or private I wanted to be with this, but I feel that we are strongest in the battles we have the most support. Please educate yourself, and feel free to follow me on my journey. I will use this as my outlet, a way to update friends and family, and as a way to record my physical and emotional journey. Remaining optimistic...

Amanda