The Positive Challenge

Having AS has created a time of my life in which I am experiencing more self-discovery, emotion, and growth than I have at possibly any other time in my life. I find myself thinking about the world and how it affects me in a completely different way these days. And my emotions seem to be all over the place! I have been trying so hard to be positive, take it one day at a time, and fight the fight… but sometimes it is overwhelming to think how I will be doing this the rest of my life… fighting for the rest of my life.

I try to remind myself that “worrying doesn’t stop the bad stuff from happening; it just stops you from enjoying the good.”  I can’t change that I have AS, and I can’t control that it will be with me for the rest of my life. I still find it challenging to come to terms with the idea that this is not a phase I am going through… I want to believe that if I work hard and try the diets, the medicine, the doctors, the yoga, the research… that I will get through it and go back to “normal.” Is there such a thing anyways? What is normal? We all have our own battles, complications, and trials. This one is mine. This is my dark cloud, my thunderstorm, my challenge. I have AS, but the real challenge is in making sure that it does not have me.

I want to be remembered as a positive person, a game changer, a love spreader… I want to be inspiration for others… I want AS to make me a better person, not a person that neither I nor anyone else should feel sorry for. This is my moment, and AS will not define me, but how I handle it will.

So, I have to look at the world differently… Can my food change the course of my disease? Will yoga save my mobility and help me bring awareness to my body? Does the course of this disease change what I want in my life and what my priorities are? Are the drugs out there worth the risk? Are they worth the side effects on my own body? Are they worth what that might mean for future family planning? What is the cause of my exhaustion, and is it physical or mental exhaustion that I feel most days? What does it mean to be strong?

I heard a quote in a movie I watched this weekend: “you don’t choose your life, you live your life.” I did not choose this disease; who would? But it is a part of my life. How I live with this disease is up to me. The biggest battle is to not let the diagnosis, the hard days, or the challenges ahead get the best of me. The challenge is to truly live with the disease, rather than wallow in it. I must find ways to remain positive and focused on the day in front of me. There is no need to let multiple days gang up on me when I have yet to face them, and when I have yet to see what they have to offer.  

Life is an unpredictable journey. Sometimes it provides you with beauty, and sometimes tragedy, but you control the course of your own journey from that in which you encounter. Take the beauty, take the tragedy, and make it your lesson and compass for the rest of your journey. AS is my opportunity. It is my growing point… Having this disease is so hard. I wish I could describe the pain that I feel, the ache in my little, 24 year old body… It is emotionally trying and daunting. It’s completely unfair. Most days I feel that I was robbed of something. Robbed of my youth and being carefree… Robbed from eating what I want, doing what I want, and having all the time in the world to make major decisions for my family, well-being, and career. But this feeling of AS robbing me of my life and opportunity will do nothing but create a course set for disaster. I will only let this one thing define me for the rest of my life… and I don’t want to live like that.

That is why AS is my opportunity. It is the opportunity to change the course of my life forever, and for the better. I have to remain positive so that this will not define me, but rather invigorate me. I will know my body better and take better care of it. I will bring awareness to this disease, so that others might find early diagnosis and intervention. I will eat better and make it a priority in my life, which will help more than just the AS. I will create strong personal boundaries and remember that I am the most important thing I can invest in. I will put my family first and take the major decisions one step a type. I will process through my thoughts in this blog and hopefully inspire others to be positive, no matter what their challenge may be. I will have a better understanding on how important it is to be grateful for the simple joys in being active and moving. I will have more mobility and self-awareness than I did even before I was diagnosed thanks to my yoga practice. I will be better in doing what’s best for me. I will find more ways to be happy and grow from the tough times.

It’s all easier said than done, but I have a plan. It’s my challenge… to be positive even in the darkest of times. If it wasn’t this, it would be something else. I challenge you to live the same way. We all have pain, heartache, challenges, and downfalls. Use them as your opportunity to grow and to better yourself. At the end of the day, you are the most important thing you have. Take care of you, nurture you, and remind yourself… it’s going to be okay, but only if you believe so.

Fighting the battle, one day at a time…

Amanda

Maintenance

The human body is a machine. It requires energy and fuel. The body has parts and systems, and it moves. The body has electrical charges and it radiates heat. The body pumps blood and excretes fluids. The human body processes feelings and information. It also puts out information and creates many things. The body is a machine, and just like any machine, it needs to be maintained to operate at its best and highest level. If it is not properly maintained, it will break down. You will have to fix it...

Maintenance... that's where I am in my treatment plan, my discovery, and my journey. I am so happy to be done with the diagnosis part of all of this... I don't want any more scans, pictures, procedures, or new doctors added to my everyday life. I am EXHAUSTED, and it hit me like a ton of bricks this last week.  You know how it is when you tell yourself "Everything will be fine" and you just keep going? You keep putting your body through tests, pictures, and invasive procedures. You drink horrible radioactive materials, fast from food, and wear it down. You clear it out, beat it up, take away food, add new food and its all in the name of "science and discovery." These are the ways to find the answers... and I am so tired.

I do not have Crohn's, but I do have small ulcers in the lining of my small intestine that are likely being caused by my NSAID. Before I had my colonoscopy that confirmed this information, I had to go off of my anti-inflammatory for 7 days. By day 5, I was in a horrible flare. Between my diet being starch FULL and no anti-inflammatory, I was not in a good situation for avoiding the pain. I couldn't walk, sit up, roll over, or sneeze without wanting to break down and cry. I told myself to be brave, to be tough, and that it was almost over. I put my body through so much stress since January trying to confirm my diagnosis and ruling out other diagnoses. I don't think I realized how hard it would be to do all of this and maintain two jobs at the same time. Last Thursday, my body broke down... I woke up with a sore throat and worried that I might be getting sick. By 2:30 that afternoon I felt so ill. My body was shaking from the chills and my entire back ached as if every muscle had been through a strenuous work out. My head was pounding and my stomach went in and out of nausea.... I stayed home sick that night and just laid on the couch with a heating pad. I tried to block out all the pain and sensation running through my body. I tried to sleep, but it was too intense. When Brian got home around 9:00 p.m. that night, he found that I had a 101 degree temperature. I could tell that it had come down from earlier because I did not feel nearly as cold. The next morning I woke up and the fever was completely gone. I felt like I had low energy, but not anything like the day before. I had a 24 hour viruses that hit my body with everything it had and I was too weak to fight it. Fast forward a couple days and I still have low energy with my first cold sore in FIVE YEARS.

My body is sending me a message. I AM TIRED. STOP. SLOW DOWN. How am I supposed to take care of my disease, let alone my everyday well being, if I don't stop and listen to what I am feeling and what my physical needs are? I tried to power through the emotions, the physical demands, and the weight of the disease(s) we were investigating. The funny thing about bodies is, just like a good machine, the will continue to run... even after missed maintenance. You may miss a meal or a night's rest, and just like a missed oil change on your car, your machine will continue to run. You can run this way for a while and everything will still seem to be operating just fine. You may miss some subtle signs that your machine is not running as efficiently as it could be, or that it is wearing down, but its still running... so you continue to push it. You continue to do this until it breaks down and you have no option but to repair it. Why do we push our bodies this way? Why do we continue to abuse the only machine that we have to get us through our future. It is amazing the things we choose to make priority over our health... In my case, I ignored my poor, overworked, over stressed, and WAY over examined body in the "name of health." How does that even make sense? I guess I was thinking about the future of my health, and in the process, I ignored the health I have today.

So, I am dedicating myself to a maintenance program. I am going to go to bed earlier and wake up earlier. I am going to stretch more and make movement an every day priority, rather than the after thought it has become over the last week or two. I am going to get back on a better diet for my disease soon and I am going to rest when I need it. I am going to do things for myself and be done with the poking and prodding. I HAVE AS. I do not have Crohn's and I know that I could still develop it, but that is not an issue TODAY. I am going to maintain my body by moving, laughing more, making time to check in with myself... I am going to continue to take the drug that is proving to help me, but lower my daily dose. I will get occasional blood tests to make sure that the anti-inflammatory is not creating a bigger problem and my Rheumatologist said that he will work with my GI to make sure that the issues in my small intestine don't get any bigger. My anti-inflammatory is not a long term drug option for me, I know this... BUT it is the very minimum treatment that I can be doing, medication wise, for the disease. My Rheumatologist informed me that the drug does not only greatly help with my symptoms, but there is evidence to show that it effects the long term development of the disease... that's why I take it everyday and not "as needed." If I go off the anti-inflammatory I have to consider some other drugs that I am just not sure I am ready to consider yet...

Now that the diagnosis and discovery portion of this is over... for now... I can take a deep breath. I have AS. That's it. I can feel it, process it, and come to terms with it. I can LIVE with it. I don't have to worry about what else it may be or how it is presenting itself. It is a diagnosis that I have, but does not define me.... and now I can work on and address that. I don't have to worry about it being a different type of spondylitis, or that I have Crohn's as well. I don't have to wonder what else we could find to explain it. It is what it is and now I can just work on finding the best way to maintain it. I can figure out what works for me and what keeps me happy. I can spend some time getting to know the new me. The stronger me. The me that won't be defined by a label, a diagnosis, or an antigen. The me that can accept that I have AS and the same me that will prove AS does not have me. It's my time. Time to take care of me. Time to be selfish and properly prioritize my needs. Time to say enough is enough and move on. I have AS... no more guessing, discovering, or wondering... just time to maintain it, control it, and beat it. Time to take care of it and me.

Take care... xoxo
Amanda

Waiting is the hardest part...

I find that I am very impatient. I don't like to wait... maybe this is part of my "planning" problem. I don't like waiting, even if its for bad news... I'd rather just know and deal with it. I hate the unknown. It haunts me, especially now.

I had a CT scan with contrast of my abdomen a couple weeks ago. This was part of my follow up with the GI since I have a history of Crohn's in my family. Crohn's can be linked to spondyloarthropathies, and can even be part of what fuels the arthritis condition in this family of diseases. AS is a type of spondyloarthropathy and so is Enteropathic Spondylitis (which is spondylitis that is a result of an inflammatory bowel disease, such as Crohn's). Both of these diseases result in an inflammatory arthritis that attacks the spine... and many of the drugs (TNF blockers) are used in treatment for both spondyloarthropathies and Crohn's. However, anti-inflammatories (from what I have read) are not used in someone who has Crohn's because they are at a greater risk for bleeding... Here are some stats I found about spondyloarthopathies for those interested... for reference I am HLA-B27 positive. This is from Wikipedia (so take it with a grain of salt)... but it did a good job of showing the family of diseases, how they relate to HLA-B27, and characteristics for these diseases... and all in a pretty chart. :)

Conditions

Condition	Percent of people with the condition who are HLA-B27 positive
Ankylosing Spondylitis	Caucasians: 92%[6] African-Americans:50%
Reactive arthritis (Reiter's syndrome)	60-80%
Enteropathic spondylitis or spondylitis associated with inflammatory bowel disease (including Crohn's disease and ulcerative colitis)	60%
Psoriatic arthritis	60%
Isolated acute anterior uveitis	50%
Undifferentiated spondyloarthropathy (USpA)	20-25%

Common Characteristics:

• They are in relation to HLA-B27
• Inflammatory arthritis, generally sacroilitis and spondylitis 
• Oligoarthritis, generally with asymmertical presentation 
• Enthesis (inflammation of the entheses: the sites where the tendons or ligaments insert to the bone)
• Familial aggregation occurs
• RA factor is not present
• Extra-articular feathers, such as involvement of eyes, skin, and genitourinary tract
• Overlap is likely between several of the causative conditions 

A link to some more information that is not Wikipedia:
http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/spondyloarthritis.asp

Anyways, My CT scan showed some abnormalities. I have inflammation in my terminal ileum (think small intestines)... this is consistent with Crohn's, but not a diagnosis of it. As I have learned through research, and through discussion on the kicks.org forum, inflammation in the ileum can be consistent with AS. Since AS is an inflammatory disease, many patients end up having inflammation in their intestines. Many do not know this inflammation exists because they do not have Crohn's symptoms and, therefore, do not have a CT scan done. Here is an article explaining that Ileitis can be symptom or result of having a spondyloarthopathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

I have had varying stomach issues my whole life, but having a husband with Crohn's and an aunt with Crohn's, I know that none of my symptoms have been as severe as they are in Crohn's patients. I think, after going starch free for a couple months, that I actually have a gluten intolerance and that all this time it has been effecting how I digest foods. I think that it, like every other physical issue, gets worse with stress. The GI even said that my symptoms were not consistent with Crohn's... but that does not mean that I don't have it. Its kind of a curious place to be... If I have Crohn's I truly believe it is a result of AS and not the other way around... I don't believe that I have been secretly living with Crohn's and didn't know until it developed into arthritis. They way I understand Enteropathic Spondylitis is that you have an established IBD and then the arthritis develops... but I am not sure of anything anymore. Both in research and feedback from others with AS... the "gut" and AS are closely related, and so research indicates that an intestinal condition or infection could aide in the development of AS. I do know one thing, having Crohn's doesn't seem to be a better outlook for me versus just having AS. The prognosis seems consistent whether it is AS or another spondyloarthopathy. Either way, I have a disease, or diseases, that are attacking my spine (and possibly my digestive system). My poor body is fighting so hard to protect itself from itself. Being your own worst enemy truly takes a new meaning in this case...

SO, this abnormality leads me to another procedure in which they will be taking biopsies to determine if it is Crohn's or not... fun. From there, we will know if I officially have Crohn's or if this is just some inflammation that it developing in my body. I have also read that taking NSAIDs can create this inflammation in the ileum... so that could be it too? This is what I mean... this waiting, this uncertainty... its BS. I am not sure what a Crohn's diagnosis would really change for me (treatment wise) other than possibly take away my anti-inflammatory... that may mean TNF blockers even sooner than I expected. BUT perhaps it could mean eliminating the NSAID anyways if it is creating the inflammation in my ileum. Good Lord, I will drive myself crazy!

So, I am waiting for my procedure in 10 days and my second Rheumy visit in 13 days. The good news is I should have a lot more information and a long term treatment plan in 2 weeks. I am hoping that this 2 weeks goes by fast and that it treats me well. I am hoping for the best outcome in all this, but honestly... I am not sure what that is anymore. 

I am occupying myself by eating starch and gluten again :) This has been kind of fun, but it has been taking a physical toll on me. It has put my stomach in a bit of a whirlwind and I have definitely noticed more pain in my SI joint (and much more stiffness in my back)... :/ Maybe that is a good thing though! If I can control many of my symptoms through food, well I will take it. Its a much better option than many of my alternatives. I will likely be going on a low starch diet in April, and this time... it will be a long term, life long commitment. Its worth giving up if I can give up feeling like this. 

Other than that, I am really looking forward to the summer. I have so many fun adventures planned and I think I am going to participate in a cycling festival and maybe one or two aqua bike races!!! I want to be active and feel the warmth of the sun on my skin. Overall, the last two months have been an improvement to the months before... I am hoping to maintain that at least for a while. I want to breathe in the wilderness air, feel the breeze in my bike ride, splash in the water, climb mountains, camp, and play. You never know when the simple pleasures will become a lot of effort, so I am going to soak it all in a little longer as I wait for the unknown.

Love, kisses, and peace in your journey...

Amanda

P.S. Please excuse any grammatical or spelling errors... I am too tired to edit. This blog shouldn't be work :) 

The Unknown.

Well I would like to say that my health and what I have been doing to change my life hasn't been wearing on me, but then I would be lying, and frankly... I wouldn't be human.

The truth is I'm a planner. I love to plan something; look forward to something. I want to know what's next and attack it in life. I like to be spontaneous in moments, but when it comes to the "big steps" in life I am always thinking about what's next and how I should approach it. I think there are pros and cons to being this type of person. I am ready for anything and change doesn't bother me... in fact I welcome it. I am always thinking about where I could live, what I could do next, when I should go back to school and where, when Brian and I will start my family, and how Brian and I will travel the world together. I am motivated to pursue a life that continues to grow richer over time and will continue to challenge me. But... maybe it does take away from the here and now a little, and I am sure that it causes me to think too much. I didn't have every detail of my life planned out, or when exactly everything might happen, but I had an idea of what my life was going to be like and what I would have to do to achieve that. Had...

AS is uncertainty and that is all I KNOW that it is. I have no idea how it will develop in me. I don't know what I will lose from it. I don't know what I will gain from it. I don't know when I will have a flare, how long that flare will be, or how severe it will be. I don't know if I will have any fusion, or when that may happen. I don't know how many good days there will be versus bad days. I don't know what treatments I will try, that they will work, or what new ones may develop in my life time. I don't know if tomorrow will be as good as today was. I don't know if I will be able to live a normal life, an adjusted life, or a limited life. It comes down to trying everything I can and hoping for the best, but I am a fool if I believe  that there will not be challenges ahead.

Like I said... I am a planner and I had a disease that can't be planned out. I find myself worrying about smaller, sooner plans. For example, in May I will be in Florida for 5 days with Brian. Our first trip anywhere (besides to see family) since our honeymoon and I wonder if I will be in a flare while we are there. I can't control that. I can't predict that. That is the hardest part of this for me. Letting go of what I can't control and pouring myself into the things that I can control to better myself and my health. I am not an overly religious person, but I find myself turning to a prayer from my childhood. I always loved it and now it speaks to me more than ever...

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Sometimes life's test remind you of how important faith can be. Whether its in God, human spirit, or yourself... having faith that you will survive even the greatest challenges can be empowering...

This past week, I met with the GI. He does not believe that I have Crohn's or Ulcerative Colitis, but I will have to 2 procedures and scan to be sure. None of which sound pleasant, or cheap... but its better to have the best understanding of what my body is going through. That way I can be closer to making a PLAN for long term treatment. What I keep trying to remind myself is that plans rarely work out the way you thought they would. "Life is what happens when you are busy making other plans." A quote I have loved and said to myself when my plans went off course. Something else that seems to be speaking to me even more these days...

I will have to learn to let go and let my life take its course, because I find the more I am trying to plan, the more stress I am building within myself. It is extremely unnerving to think about your life and your future, and how a disease will affect all of that. You start letting negativity seep into everything that you are building towards and living for, and its like poison. The things I am looking forward to the most are now tainted with the idea that I could be in a flare or unable to attack my future the way I had planned. It's hard not to think about the future, but especially now... It's funny, actually. It's what I need to surrender the idea that I can control how it will all turn out that I am thinking about it more than I ever have in my life. There is so much I don't want to lose, but the stress of thinking about it over and over is probably the worst thing I can do for my disease and my sanity. I have control on how I deal with my disease now. So, I am working on letting go and having faith that even the things that take planning will work out as they should. I will work hard to give myself the best possible outcome, beat the odds,  and have faith that it will work in my benefit. I will attack one day at a time rather than be prepared for many years at one time, because the truth is... even if I didn't have AS it probably wouldn't have all worked out the way I had planned. 

So, I am having scans and scopes, and I am taking more supplements than ever... and I am going to try to leave the stress behind. I need to remember to nurture myself and let myself feel what is happening to me, and then let it go. I think it is important to be in touch with how I feel about everything happening to me, but there is no sense in dwelling on it and stressing about how I won't be able to control it. This, of course, is easier said than done... but I will do my very best. I owe it to myself. 

People do the best they can with what they have. I continue to have amazing support, especially from my husband. The more I let go, the less stress my disease will have to feed off of. The more I accept that the unknown can be exciting, rather than terrifying, the more I will be living to the fullest in the present time. And, well, the present is what I have to work with.

With my glass half full... (of wine :) )

Amanda

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