Fear

Fear is an emotion induced by a perceived threat which causes entities to quickly pull away from it and usually hide. It is a basic survival mechanism occurring in response to a specific stimulus, such as pain or the threat of danger. 

Can I just be honest for a second? I am scared.

Okay... there I said it, I think out of everyone, I have been the most afraid to admit that to myself. But, it is true. As I have said before, the worst thing about all of this is the unknown. I am trying everything I can think of to stop this disease, prolong my mobility, and live my life to the fullest, but sometimes I don't think I am addressing the emotional part of all of it. I have been diagnosed with an inflammatory arthritis that will attack my spine every day of my life. My body will attack itself, without realizing it. It will fight to steal my youth, my mobility, and my ability. I will live in and with pain. How do you come to terms with news like that? Am I doing that? Sometimes I don't know if I am dealing with it, avoiding it, or pretending I am doing either one of those things. I don't want anyone to feel sorry for me, but I also don't want anyone to think it's easy... It's a complex place I have found myself. I have immense fear of it and sometimes, the only way I think I can avoid that fear, is pretending that this isn't happening to me. But, when I do that... I seem to be brought back to reality by some physical disaster and its like a severe collision into my life.

Honestly, I can't take anything else with my health. I am seeing more doctors than I have ever in my life. I spend so much of my money and time on my health care trying to fight this thing head on. I have had my body respond in such weird ways in the last year of my life, and I have no idea what is related to my AS and what is not. I don't know what is just stress, life, womanhood.... And I have no idea what this disease is truly doing to me on a daily basis. 

I am in fear. I want to "pull far away from it and usually hide." I feel that I must try to "survive" in response to the "pain and threat of danger." Most days are good, but I am so immediately reminded of my situation when they are not.

I realized at some point in the last month that I have done so little for myself in the last year of my life. I have seen at least 8 different medical professionals (multiple times) in the last year. I have tried acupuncture, chiropractors, physical therapy, drugs, yoga, and new diets. I have been working two jobs to save money for my family and saving my days off in case I need them for some unforeseen disaster. I have thought about what drugs I might go on and how that would change my thoughts on my family planning timeline. I have been buying a house, loosing a house, buying another house. I have been trying to "get by" and at some point stopped living my life. I lost my spontaneity out of fear and caution. I don't know what to do anymore, but somehow I felt responsible to do all of the things in my life to prepare myself for the unknown. How do you even do that? Prepare for the unknown I mean... The answer is that you can't, but I have been trying desperately to do so... Like that is easier somehow then connecting with how I feel today.

I want to take my AS on head on, but really it should be to make today better, with the hope that it will continue to make things better in the future. I want to do more for me; more living. More of being myself. More dancing, more reading, more baths, and more time for me. I want to remember what it is to be in tune with how I am feeling and what I want. I want to stop living in fear and preparation for the unknown, and instead start doing things for myself again... because I want to, not because I need to. 

I can't control it. But, there are many things I can't control... There are some scary, unknown things on the horizon for me, but what am I going to do about it today? How can I make this moment of my life easier and more enjoyable? That is what I am going to work on asking myself. I don't want to live in fear I want to live in a way that I am always trying to make this shitty circumstance a way to be better in tune with my wants and needs. This is my challenge, my battle, but it does not have to take over my life with fear. I need to start recognizing the moments in which I am living in fear and address those differently. I have to accept that there are things I will not know today, or maybe even tomorrow, and I can't control that. I need to address what will make me happier right now and what will make me deal with my AS in a positive way today... one day at a time. It's easier said than done, but now I am thinking about the things that make me happy and distract me at the same time. Those things make me feel like I am living again and like  the moment I am living in is all that matters. 

So for #honestoctober... well, honestly... I am scared. And that is how I am feeling today. Each day is different, but for today I am scared because I don't like that my Rheumatologist told me that my drugs don't prevent flares, they only decrease my inflammation. I have been lucky enough to not have to take any immuno-suppressents or biologicals yet. I don't like that I could have a flare at any time and that shouldn't be unexpected. I am fearful of deep achy pain that has become more present. I am fearful of my lack of sleep and increase of fatigue. I am fearful of having to retake blood tests. I am fearful of the wearing I have been feeling. And that is what I need to address for today. Rather than the fear of what all that means for me in the future, I am trying to address how to make that fear better today. Like I said, every day is different.... today I am battling the fear, and I am trying to make that better. 

This journey won't alway be interesting or new, but it is what it is. It's what I am dealing with and it's what I live. But, it already feels better getting that off my chest. You can still be strong and scared at the same time. I think being brave means that you are aware of the risks, the pain, and the battle ahead... you completely recognize the fear in you, and yet... you move forward. You fight on. Onwards and upwards. Tomorrow is a new day, and sharing will be my strength in all the fear.

XO

Amanda

Tame the attacker.

As many of you know, I have been in a pretty significant flare the last few days. I have been lucky enough to have not had any significant pain in almost 9 months... but here I am. I felt that this... this moment and pain, this first, real flare after my diagnosis, would be an important thing to document.

Truth is, I worried about this moment breaking me. I did not know where or when it might take place, but I worried I would not be mentally prepared for it. There is some sort of deep connection between the physical and the emotional. They communicate and feed off of each other. When one is depressed, they are many times fatigued, disconnected, and sluggish. When you are physically exhausted, many times you are stressed, impatient, and grouchy. Maybe this is just something I notice in myself, but the human body and the human emotion are a communicating being that help decide the you that you are going to be that day. Anyways, I was broken, but only in the moment. I let myself feel my weakness, recognize my pain. And I felt it... I truly felt it. I was connected to the disappoint I had in being in that state, and the absolute drain of energy it takes to try and get out of it. Acknowledging that it was disappointing to be in this place allowed me to feel that, and then let it go. I could then asses what my physical body needed... what it was trying to communicate to me.

A couple weeks ago, I had the great opportunity to work with Manouso Manos, one of the most prestigious Iyengar teachers in the world. This opportunity opened new doors to my understanding of yoga and the poses I regularly work in, but more than that... I gained an emotional understanding of yoga, and my disease. Manouso stated that one of the biggest mistakes that people with chronic illness and autoimmune diseases make is that they feel they should "attack" the disease head on. That they should fight it and yoga (or some other medication, exercise, etc.) will be their weapon. There is no cure all for A.S. There is no wonder drug, or magic diet, or exercise I can do to stop it... or kill it... or make it never come back. It is a part of me.

My body is ATTACKING itself, why should I attack back? I have believed for so long that in order to be successful at something or better my life in some regard, I must ATTACK the challenge ahead of me. "I must conquer the disease" has been the mindset that I have had, hoping that it would make me stronger and keep me away from symptoms... That workshop opened a whole new way for me to think about this disease and what my body is going through.

Manouso personally gave me an analogy about my A.S. He told me that if I had a wild animal, I would not beat, attack, or over work this animal expecting it to do what I want... at least not with the results I wanted. I would nurture the animal. I would take care of it, love it, and find a way to communicate with it so that I could get the desired actions from the animal. Perhaps not everyone treats animals in this way, but those who have the best relationships with animals do. The same goes for our bodies. Those who listen to their bodies and nurture their bodies, those are the people with the tools for success. Every day is a learning experience in which I need to be communicating with my A.S. and become aware of what my body is trying to tell me. I will not be able to fight off my A.S. and yoga will certainly not stop me from ever having a symptom again, but it will be the tool I have to stay mobile through my pain and potentially help me work out of the pain. I will know if a back bend feels good or whether a restorative pose will bring back the energy I need as a result of this ongoing battle within.

My diet, the yoga, the medication... these are all tools for me to aid my body and work within that communication. This flare has been horrible, painful, and physically draining. It keeps me from doing all of the physical things that help me relieve stress and live my daily, normal life. But, this flare is giving me the opportunity to communicate with  my body. See what yoga works while I am flaring, to bring back in the physical therapy and see how that helps, to watch how the diet changes or doesn't change the symptoms... It gives me the opportunity to communicate with my A.S. and strengthen my knowledge for the future. This flare is a result of the ongoing war... my body against my body, but I will not let my knowledge and my emotions go to war. I want them to tame the attacker, to work with the disease to find ways through the worst of it and grow from each experience. If I do this, I may get to a place where yes, I have A.S., but I am managing it... working with it to a place of peace on most days. That way I can continue to have A.S., but not let it take me to battle and weaken what I still have control over.

It doesn't always have to be a fight. That is an emotionally and physically draining state to constantly be in. When the pain comes back and shoots from spine to my toes, I feel defeated in the attack. Today, I choose to look at this as the opportunity for a gained awareness of my body and opportunity to nurture it just a little bit more. I will not fight this flare, I will work through it and with it to a place where I feel better. And then, I will have the knowledge in how to move forward the next time I find myself in this painful, scary place.

Thanks for reading.
XO,
Amanda

It's the kind of tired that sleep can't fix...

I am 25 years old. I am 25 years old and most days, I feel so disconnected from that age. I don't know how it might feel to be in my 30s, 40s, 50s... or even in my 60s, 70s, and 80s... but I do know I don't feel 25. My mornings are slow. Its hard to get out of bed. I am exhausted. Most of the time sleep doesn't feel very restful anymore. Some days are better than others, but most days I am wondering why I feel so drained... like I have been pulling all-nighters multiple nights in a row. Beyond feeling unrested, the morning is the worst time for my AS. I can barely roll over or sit up due to the stiffness in my back and hips. I feel frozen or like I climbed a mountain the day before. I don't have the severe, sharp pain I was having, but I am very aware of the difference I feel now compared to a few short years ago. It seems harder every day to get going, and get motivated. I usually try a few stretches, maybe a hot shower, but really I just have to wait for my body to catch up to the idea that we can't sleep forever. That I can't afford to hide in the covers all day and sleep the pain, the stiffness, the fear, and tiredness away. It doesn't really matter if  sleep 5 hours, 10 hours, nor a whole day though... It's the kind of tired that sleep doesn't fix.

Having a chronic disease is exhausting. It is a constant battle happening within yourself, and it will never stop. There may be periods of remission, or things that you can do to help quiet the pain... but it is a part of you forever. That in itself, is such an exhausting thought. Even though I feel so tired, so often, it is hard for me to relax and let go into the place where I get the most rest. Its hard to fall asleep or face the night. I try to get comfortable, not think too much, and just let go... My body holds on. I can feel the tension in my muscles, my ligaments, and even down into the center of my bones. I have to mentally work with each part of my body to help it let go... to release whatever it is my body seems determined to hold on to. Sometimes it feels like my body is holding on so tight to protect itself, out of fear or something else, but it does not realize the damage it does in return. By hanging on and fighting so hard, I don't feel I am ever recuperating theses days. I just feel so tired. Its hard to remain positive the more exhausted you feel.

Sometimes I find it hard to differentiate whats happening in my personal life and what is just a symptom of the disease. I know that fatigue and trouble sleeping is a part of AS... it has been something I battled with when my symptoms first started. However, I also know that when I got on medication that seemed to really help the inflammation and pain, it seemed to help with the sleep as well. The more that my life becomes more exhausting or stressful, the more I am noticing the symptoms start to rear their ugly heads. Perhaps there really is no differentiation and the two or always in complete communication. I have to believe that stress and the disease are working together to wear me down... and the hardest part is figuring out how to have the energy to fix it. Having the energy to problem solve and know what to do in my life to fix it seems like an exhausting thought. Sometimes you just feel that you are trying so hard to do what you have to do and, at the same time, trying to take care of yourself in the process.

I want to be able to be off of my drugs. I am still only taking the 7.5 mg of Meloxicam, but my goal is not be dependent on it for pain/symptom relief. That being said, I haven't had the medication in 3 days and my hip is starting to ache the most it has in months. If I am being totally honest with you, it actually just makes me want to break down and cry. Something about the pain in this disease is so disheartening and draining. It makes me feel physically, mentally, and emotionally weak. It is the kind of tired that sleep can't fix.

I want a good book, a week off, and maybe a little bit of wine. I want a beach chair and an afternoon nap. I want just a couple of sweet days off with my husband where we aren't trying to have a relationship between work, school, and second jobs. I want the energy and reassurance to tell myself that this is a bad patch, and well.. they are going to happen. I can't fix everything at once and my exhaustion is sadly making me think that I have to for some reason.

AS is an exhausting disease. It is hard to get out of bed in the morning. It feels like I have aged decades overnight. My nights are restless, and my body continues to hang on when all I want it to do is let the day, the week, and even the last year go. My mind is racing with the possibilities, the effects of the drugs, work, my physical well being, and the future of our family. My emotions are strung out, and most days I feel like I am compromising to loose the little bit of my youth I have left. AS is the kind of tired that sleep can't fix...

It's the kind of tired that only I can help fix. It's the yoga that teaches me to talk to my body and help it let go. It's knowing that the medication is okay for now, especially under this period of stress... and that I will find another time in my life to try to go without it. It's letting myself sleep when I can and knowing that every once in a while, sleeping in until 10 a.m. could be a life saver. It's picking one thing at a time battle instead of the whole war. It's doing something for me every once in a while and letting myself feel young...

AS is exhausting. And sadly, it has been more exhausting lately. The mornings have been harder and I have had less restful sleep. I am feeling completely drained and emotional about these symptoms, and honestly life in general. This is part of the journey and what I am hoping for is to grow from it. In the meantime, if I seem cranky, well I probably am. We could all use a little compassion, understanding, and patience from our loved ones. I can think of no better treatment for myself. I just need to remember that as much as I need this from others, I need it most from myself. Hoping for a better week as this one comes to an end. It's the kind of tired a little self-love and compassion just might fix...

Amanda

Acceptance

"Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices."   -Paul Tournier

Lately, I have been thinking about acceptance and what that really means. Over the course of my short 24 years (25 next month : P) on this earth, I have had various troubles with acceptance. Accepting my parents’ divorce was the first real challenge of acceptance that I remember encountering in my life. It is hard to know the balance of working through an issue, and avoiding it. Sometimes, I think my form of acceptance has been learning to live without thinking about that something... as if it does not affect me. But, I am not really sure that is "acceptance" at all.

A.S. is my reality, but I think most days I find myself crawling into the hole of "maybe this isn't really happening to me." I talk about it, I blog about it, I think about it... but many days I try to pretend I am not LIVING with it. Sometimes, I think my stiffness and pain… Well, just maybe that is from a new work out. And maybe the starch won't hurt me since there isn't any "real" research to support the diet aiding in the disease... I find myself thinking about why this could have happened to me. What I did to trigger the disease in myself, as if I ever had control over it. I think about how to avoid it as a lifestyle, rather than accept it.

My NSAID has made such a difference in the sharp, unbearable pain I was having. That pain took over my whole body. I would take a step... and it was if a snake of sharp jagged knifes ripped through my heel, tore past my knee, left my thigh completely numb, and coiled deep into my SI joint until it triggered every nerve into full agony. From there it made a straight shot into my skull leaving me physically and mentally useless in helping myself. My NSAID has made me comfortable, which I am extremely grateful for, but I worry about being too comfortable. I am worried that being too comfortable will keep me from accepting the long journey and battle ahead. I am worried I will forget that pain. I am worried that I will not be dedicated to my other life changes, and when my next flare comes… I will break down. I fear the break down because I am not sure I am emotionally prepared for it at this point. I have this small voice telling maybe it won't ever happen again. I am not sure I am not ready for a time when a drug does not solve the worst of my symptoms.

I know that it is all about taking it one day at a time, but I don't ever want to leave many days at rest, not preparing for the next war. This is a disease where I think avoiding its reality may be the worst course I could take. I think I need to be extremely proactive to save my body, it just can get exhausting when every day seems like preemptive battle. But honestly, I just don't know what I am doing... and that in itself is terrifying. I am pulling at strings as to what might help me, what might save my back. I love my back, you know? It's not really something you think about until you think about your spine not being a part of you... not moving with you. I love that I can bend, twist, jump, curl, twirl, somersault, back bend, halasana (plow pose), arch, flip... not only do I, as a person, love to move... but I have such an appreciation for how my spine moves me and moves with me.

My exhaustion is growing. But, how much I sleep is not... Falling asleep and waking up are the worst... I think this stealing the motivation I have left and letting me fall of being “comfortable” with the NSAID... I don't want that. My goal is to be off of the NSAID at the end of the year, and... I don't want to take anything else. At least not for now... It’s naive to think that modern medicine isn't a helpful and an essential tool in this disease, but it’s just as naive to believe that you can't make changes in your daily life to help control the symptoms. But, it is hard. It is the hardest part of all of this. You live your life a certain way, for your whole life, and then you find out that this new part of your identity is going to help dictate the way you live the rest of it. Some days I tell myself "Que sera, sera." Other days, I just cry... and those days almost always take me by surprise.

I think a huge part of acceptance, for me, is the emotional component of it. How do I feel about it? Why do I feel that way? How do I work through that? How do I feed the emotional needs of this disease to keep me motivated and happy? Lately, I feel that I have been thinking about what I HAVE to do. What in my life I have to get in order before I go on drugs that scare me. What I shouldn't be eating. What I may not be able to do. What vitamins I should I take.... everything is a chore! Of course I am exhausted. Of course I am losing motivation. This is not the way to think about the challenge I have ahead of me, nor the one I am facing today. I need to accept my life and think about ways to better it. What can I do to better my situation, not what I have to do to "deal" with my situation?

I want to accept the identity of being an A.S. patient and make something of it. I will be a better person because of this, I can already feel it. I am now meeting some other physical needs that my body has needed for years. I have a new awareness and now, I need to accept that. And integrate it so that it is not a chore, but simply a way of life... like I don't know any different, therefore I embrace it. I may not get there today, and maybe I will not be there every day... but I am identifying the problems with the way I am thinking about my A.S. today. I think that will be one of my strongest tools in the battles ahead.

I need to accept my body for what it is, and challenge myself to see it as a gift. I have been blessed, not cursed. I will cherish and take care of myself that much more now... I need that. Use today to see what you can accept and grow from in your own life. You are bound to surprise yourself...

Hugs,
Amanda

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