The Outlook

 

 

I recently got the chance to spend some quality time with my father while he was going through radiation treatment. I was there to help care for him and support him as he battled his way through the emotional and physically exhausting cancer treatments. What I didn’t know, is in many ways, he would be supporting and helping me find strength in his example.

My father is an optimistic person, even in the worst of times. He would always tell my brother and me, “Don’t let the bastards get you down.” He always told me “not to panic” and that action was better than becoming emotionally overwhelmed and immobile. He has faced cancer the same way.

With only a week left in radiation course, my dad was asked to talk to a woman who had recently been diagnosed with the same cancer as him. He agreed. The woman was overwhelmed. She was barely speaking clearly. She had two small children at home and she was scared, very understandably so. She asked my dad about the radiation treatments and their side effects. He spoke to her calmly and told her he only had a week to go. He told her that eating, swallowing, and throat pain was the worst of it. He told her his voice had not really changed and showed her the burns on his neck. She told him that she did not understand how she had throat cancer… that she wasn’t a smoker, and that it wasn’t fair. And my dad looked at her and told her, “No, it’s not fair. But this is the hand we were dealt, and you can’t change that now. So you have to fight. You have to go at this head on and fight it. We are the lucky ones. Our odds are good. It could have been much worse the way I see it.”

How right he was. Sometimes things happen, beyond our control, and even sometimes within our control, but the most important thing is how we react to them. How we move forward. Was it fair that I was diagnosed with AS? No. Can I change it? No. So, what’s next? How do I make it better? How to I fight the symptomology and live my life in a beneficial way? 

I thought a lot about this blog over the last week… I want to be able to share the positive things I am doing to rebuild my life, keep myself moving, and the support I have received. I want to share that with all of you. This blog should be a source of support and information with those diagnosed with AS. But, it is also an outlet for me. It is a way to communicate with loved ones and bring awareness to others about a disease so many people know nothing about. 

My experience with AS is going to be different from many others, but that is because no two people are alike. Symptoms will present themselves differently and respond to some things better then others, but I do believe it is absolutely crucial for all those diagnosed with AS to keep moving! My pain is mostly in my SI joints, with pain presenting more commonly on the left side rather than the right. In the last few months, my thoracic spine has become much more of an issue. It has gotten extremely tight and achy. The muscles surrounding my spine have seized and I have needed adjustments. Luckily, my roommate also happens to be my Physical Therapist. Talk about a dream come true. She also cooks and helps me stay active. #prettyluckygirlhere. What I consider "everyday" pain is very different from a flare. On any given day I will have tightness, aching, soreness... I will feel like my spine is being pulled by tight rubber bands, trying to curl the spine forward. I try to resist this curling with stretching and sitting up straight, but it can be very exhausting on my muscles. Hot baths, walks, and adjustments help greatly. I also have been working on creating a yoga sequence that will help me with this pain. Hopefully I can share some thoughts with you on that soon!

As far as medication goes, i am still on 7.5 mg Meloxicam (mobic), which is an NSAID. The biggest things to be concerned about while taking a drug like this are liver/kidney functions and internal bleeding. So far so good, but its not a forever answer. I am not sure any drug is. I have been able to avoid drugs like Humira and Enbrel for almost 2 1/2 years, and for now... that continues to be my plan. Any drug where CANCER is a possible SIDE EFFECT seems like it should be thought about a few times before taking. Other personal things I do for treatment and pain relief are Iyengar yoga, stretching, heating pads/icing, sleep with a bolster under my knees, massages, walks... you get the idea. I believe these things really make a difference. I also believe that a Physical therapist is CRUCIAL to long term AS care and symptom control.

According to arthritis-heath.com:

"Physical therapy and active, low impact exercise help considerably in the treatment of ankylosing spondylitis because they can prevent or slow development of a stooped posture which is a characteristic of many ankylosing spondylitis patients, as well as maintain movement and flexibility in affected joints. Physical therapy generally will focus on promoting good posture, stretching to achieve greater flexibility, as well as strengthening exercises to support the spine. Deep-breathing exercises can also help patients focus their energy and increase lung capacity.

In addition to participating in physical therapy, some patients find relief from special support devices. Although they do not help in treating the disease, they may help maintain the posture or position achieved through physical therapy. These include:

• Lumbar supports (e.g., lumbar support pillows)
• Back braces
• Support mattresses or zero-gravity chairs. 

 The following link has some different methods of physical therapy, many of which my physical therapist has used to work with me. While this may not be a "cure," I do believe fully that working with a PT helps keep mobility, posture, and symptoms at bay. See some techniques here: http://www.healthcareatoz.com/physical-therapy-for-back-pain-relief/

It can be emotionally overwhelming to think about AS as it pertains to my life both now and in the future. Yes, I'm scared I will have a flare and be limited in what I can physically can do, I am worried about how it will impact my choices in the future for starting a family, I worry about what it means for me in my 40s and 50s, I worry about not feeling like myself... These feelings are understandable and sometimes unavoidable, but they are not what is going to keep me moving forward. As my dad said, this is what I was dealt. It was not fair and it is scary, but now I have to live in a conscious way. A way that protects my body and keeps me moving. I am one of the lucky ones, it could have been so much worse. After all, I have AS and I spent last Saturday skiing. And when I need to supplement in some treatment, I do all the things I told you about above... but most importantly, I try to laugh. It keeps me feeling good.

Take care, love bugs. Hopefully I will be writing more soon!
Amanda

Boxes of Pain

I have been thinking a lot about pain lately, and giving everything that has happened recently… I suppose that isn’t surprising. I have been wondering what pain is and all the ways it might present itself… or how we, as people, react to it.

After googling the word “pain” I read the following on Wikipedia: 

“Pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, putting alcohol on a cut, and bumping the "funny bone".[1] The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."[2]

Pain motivates the individual to withdraw from damaging situations, to protect a damaged body part while it heals, and to avoid similar experiences in the future.[3] Most pain resolves promptly once the painful stimulus is removed and the body has healed, but sometimes pain persists despite removal of the stimulus and apparent healing of the body; and sometimes pain arises in the absence of any detectable stimulus, damage or disease.[4]” 

Some of those points really stuck with me. Pain IS unpleasant. And it IS damaging. Pain causes us to go on the defense and PROTECT ourselves… our heart, our injured limb, our mind… whatever may have been hurt by a damaging stimuli. What struck me about this passage is that I felt like it was speaking to my mind/heart AND to my body. It also addresses the point that sometimes we are in pain without knowing or detecting any direct cause or stimuli for that pain. 

I have thought about my reaction to pain, and I assume, many others reaction to it. The common response of protection or defense… we “fight through the pain.” We tell ourselves things like, “What doesn’t kill you makes you stronger” and “No pain, no gain.” This thought process… “To never give up, never give in, and never surrender” may be useful in most cases, but what about those in which pain is ongoing. Those in which pain is a chronic condition. What about the emotional loss of a person that will never return? What about a chronic illness? What about a terminal illness? What about the things that will never get better… What about progressive pain?

In my present life, I have had to change my thinking on pain a little. The truth is I am not beating AS. I will have it forever. There is no cure. And “fighting it” seems to actually get me nowhere. As I believe I have mentioned before on this blog… someone once told me to no longer fight something that is, but to work with it. Accept that it is there and ask myself what there is to be done with it. What do I need right now?

It’s become a concept that I have had to apply to very many aspects of my life in the past year. I have felt so suffocated and lost in pain; I was not sure how I would ever return to myself. I was lost in waves of emotions and uncontrollable anxiety like nothing I had ever felt before. I would cry and wail until I was numb. I would sit and stare. I would lose sleep or have vivid nightmares… and the more I tried to “fight it” the more it seemed to rage on. 

Picture something with me… You lay still on the ground. You completely relax your body and mind to the best of your ability. You notice a humming in your body. The humming increases to a twinge and before you know it, it is full on radiating and shooting pain. This pain may be in your hip, back, shoulder, knee… or it could be in your wondering mind, or broken heart. But it is there. And you notice it. You notice the ache or the panic and it’s all you can think about. You are no longer relaxed or clear minded. You are overtaken by the unpleasant sensation of pain. Now instead of trying to fight that pain or forget about this overwhelming sensation… create a box around it. Recognize that it is there and give it a place. Put it in the box you made. Picture that box and take notice to that area, and do so with purpose…now, address the rest of your body. There are many types of pain we can avoid or “fight,” but the plain and simple fact is that some pain is inevitable. For the pain that you can’t fight; the pain rushes into you and stays with you… What if you let it in? What if you let yourself acknowledge the pain rather than fight it or ignore it? What if you accept that the pain is there and that you may or may not know the cause of that pain? What if you put that pain in a box, you hold that box, and you say, “I see you. I hear you. I will work with you.”

There will be times where the pain is too much to put in a box… It may be spilling everywhere. So, let it out. Scream, cry, shake… let that energy flow out. When it’s too much to contain in the box, let it out. And when the dust settles, try again. What if acknowledgement is the key? What if we let ourselves take notice to the bound up and twisted things inside of us. What if we do our best to isolate them while still acknowledging their presence? 

With AS. I have been given the curse, and ultimately the gift, of learning how to live with pain. To learn how to work with myself to accept pain and keep it isolated, minimal, and as controlled as possible. Sometimes, pain flares…both in AS and any other physical or emotional pain. There are overwhelming moments. But I have begun to try and FEEL all of the things that have happened to me in the last year. I have been carrying so much pain with me… burying it and digging it up. I have rolled in the dirt of it… and now? Now, I am putting it in a box. I know that I can’t get rid of all the pain that has accumulated from my AS, from my divorce, from my aunt dying, and from my father’s cancer diagnosis. I know that I cannot stop missing people or loving people or wishing things had happened a different way. But, I also know that I have to life with what is and that pain has a space. 

Now, when I feel my emotional pain, I try to settle myself long enough to imagine acknowledging the pain and putting it in a box. A box so that it will not spread and take over the happiness and healthiness I have left in my body. I will store that box for when I need it and try to lighten the load of what I carry on a daily basis. But I know that its mine… I still have it and, come to find, it is easily accessed.  Maybe the best way to move on is to fall… to acknowledge the dark places and pain and suffering in you. You can’t rise above something until you have been under it, or at least with it. Maybe this is truly the way to “protect a damaged body part while it heals, and to avoid similar experiences in the future.”   To acknowledge pain may protect us in the long run.

Find your pain, build your boxes, and pack up… Come with me, it’s time to move on. 

XOXO

Amanda

It comes and goes in waves...

This has been one of the hardest years in my life. Personally, I like to listen to music when I feel lost, overwhelmed, and need some clarity. I have been listening to this one a lot lately...

"Comes And Goes (In Waves)"
This one's for the lonely, the one's that seek and find
Only to be let down time after time
This one's for the torn down, the experts at the fall
Come on friends get up now you're not alone at all
..... It comes and goes in waves

It all does come and go in waves. I have been lost in a strong tide of these waves for some time now. Waves of pain. Waves of strength. Waves of so much vulnerability. Waves of fear. Waves of depression. Waves of anxiety. Waves of happiness and of clarity. Waves of sadness. Waves of optimism. Wave after wave, and none of them the same. This tide has been drowning me. Stealing every last bit of my energy, strength, and perseverance. 

This blog was, and is, supposed to be an outlet for me dealing with the emotional, physical, and mental challenges that come with being a person living with AS. However, I guess I looked at it in a limiting way... For example, how my AS would affect my life, and not how my life would affect my AS.

My emotional tides crash into my AS like a hurricane. With each new stress and each new conflict, I can feel the impact. So much of one's physical condition depends on their emotional and mental well being... you can imagine how this might be amplified with having an auto-immune condition. I'm so aware of my condition these days.... It's like I have a boat with weak keel ( a lengthwise piece which the frames are fixed...also known as the "backbone" of the boat--- See what I did there ;) ) and I am watching wave after wave take its toll.

Every day I feel my spine in a way I am sure I couldn't have before, but I don't remember... I don't remember what it feels like to not have soreness, tenderness, and tightness up and down my spine. Being active, I often wonder what "normal" 26 year old men and women feel in their spine... Is it similar? Not at all? Somewhere in between? I know that at my worst, in a flare, it probably isn't very comparable... but what about every day life? I guess I will never know. What I do know, is that the emotional waves of being a 20 something, dealing what life is throwing me is a very normal thing. I just need to figure out how to own my emotions and my body again so I may better weather the storm.

This one's for the faithless, the ones that are surprised
They're only where they are now regardless of their fight
This one's for believing if only for it's sake
Come on friends get up now love is to be made....

It comes and goes in waves, I
Am only led to wonder why
It comes in goes in waves, I
Am only led to wonder why
Why I, why I try


I have debated long and hard about what to say in this blog and how open I wanted to be. Ultimately, I have decided that there is something therapeutic in being honest with yourself and owning where you are in life... So, here is the source of many of my waves...

In the last year, my marriage has fallen apart. It officially ended this fall. It has been one of the most exhausting and excruciating things I have ever gone through. I don't wish to go into much detail about it or answer questions... All I can say is that it wasn't right anymore and we weren't either. I have no ill will towards him and I am learning to take steps in a new life on my own. This has been the hardest way to personally grow and the emotions have been overwhelming. Through the rough patches and ultimately the end of my marriage, my AS reminded me that I had to take care of myself and work with my body. I have learned about taking care of myself and slowing down in emotional turmoil, but it has not been an easy lesson.

In August, my sweet aunt passed away. It was very unexpected and hard for my family. She also had an auto-immune disease called Crohn's. My aunt had a hard battle with her symptoms and her daily life was greatly affected. Her spirit was great though, and her energy contagious. I felt so lost in emotions with questions and confusion and anger. How could this happen? Why did it happen? I would take walks by myself and cry. I, like the rest of my family, felt so lost. She made a remarkable impact on people in her life. I will never forget dancing the night away with her and my cousin or the talks we shared just two short months before she died. She reminded me how much opportunity there was for life. It is very hard losing a family member, but I also lost the only other person in my family with an auto immune disease or condition. There was something deeper that we understood about each other and what challenges there were. She personally reached out to me when I was diagnosed and made a point to tell me she was there for support. All I know is that her connection with my mother and cousin was so strong, and her support of me so loyal... I try to channel that energy into a positive outlook in living with AS and not against it.

And finally, last month I found out that my dad has stage 4 throat cancer. There are no words for how scared and desperate I felt with this news. My dad was my hero growing up. He never panicked and always figured out how to go after a problem rather than worry about it. He is doing the same now. I have been home with him, helping him get through the awful throws of chemo and its toll on the body. I can feel myself tense up when I feel out of control and helpless. I feel my aching pain grow into a mild pierce of pain. I feel myself building. My dad was my soccer coach, my story teller, and my confidant growing up. He is still my story teller, my innovator, my personal musician, my inspiration, my carefree spirit, and my strength. Through everything he has remained optimistic and calm. I wish I had that energy. His recovery rate is high, luckily, so we are all hopeful. I need my dad in my life, so much. There is so much more for us to do together.

I have spent many nights crying over one event or another, or sometimes at a random movie. All of these events have impacted my life in such a way, that it is hard for me to make sense of what wave will rock my boat and which one will capsize it. I am trying to harness both my emotional and physical well being again. It has been hard. Many days I have wanted to keep busy and my mind off of these events, my emotions, and where I am now. Being so emotional, that doesn't get me anywhere though. I am still just sitting in the middle of the ocean waiting for the next big storm to hit.

Somehow, I need to move forward. I need to know how to emotionally grow and physically maintain. I let myself cry when it comes, and I let myself laugh when it comes. I make jokes when I can, and run when it gets to be too much. I try not to be idle, but also set aside time to think, process, and work on peace. I acknowledge my body and its pain. I try to understand the connection between my emotional waves and its wear and tear so I may be better equipped in the future.

This is for the ones who stand
For the ones who try again
For the ones who need a hand
For the ones who think they can
It comes and goes in waves, I
Am only led to wonder why
It comes and goes in waves, I
Am only led to wonder why
Why I, why, why I fly

I am in the middle of the ocean. Surrounded by ongoing waves of emotions and pain. But I am not getting anywhere by trying to pretend I am not here or that none of this happened to me. It's time to start learning to ride the surf rather than drown in it. I want to be stronger. I want to move on. I want to do what needs to be done next, for me and my family. And if I can't surf quite yet, perhaps I can at least start to paddle out of this bad patch of sea.

Thanks all,

XOXO Amanda

 

Who needs an immune system?

I think I had an immune system at one point... but I am not sure where I placed it. Have you seen it? I think I left it somewhere... possibly with my strength and well being. On that note, if you find either one of those, I would greatly appreciate their safe return.

Hmmm.... a description? Yeah, I can describe it. I kept it safe in my body for some time. It helped me ward of the evils of the world... disease, infections, viruses... It was my shield. It protected me from the evils that tried to attack and invade my body. I fed it well and did my best to take care of it...

You want the truth? I think it ran away... Well, first... it became compromised. Not because of anything I did directly, but because sometimes these things happen naturally and we have no control over it. It was something bigger than me... it was genetics. Anyways, that hurt my immune system. It made it abnormal, and tested its strength and ability. My poor immune system got confused and didn't know what it should be fighting anymore. It started attacking good tissue in my body. Luckily, I have been able to help it calm down and not be so hard on my poor tissue that runs through my back and hips. But, recently I think it became suppressed due to stress. It fell into a dark hole and didn't want to fight any more. It wanted to lay there and sleep; curl up and be left alone. It wanted to not fight anymore and just let everything pass, no matter the damage.

During this suppression, I have been sick multiple times, developed scars from simple scratches, multiple bruises, cold sores, viruses, etc. I have spent so much time and money at doctors trying to get my immune system to "respond." I have been told numerous times that it is pretty much non-existent at this time. So, God forbid, someone sneeze around me, cough, not wash their hands, have the stomach flu... I feel like I should be the Bubble Boy. My doctor keeps asking me if I am dealing with anything creating high stress in my life... Ha. I wonder what would make him think that.

I miss my immune system. Hell, I miss my energy and my strength. I miss my motivation and my desire to take on the world. I feel like a slug most days. In some moments, I feel my immune system creeping out of its deep, dark hiding spot... but immediately, my back and hips begin to ache. My hips fall out of alignment and my back muscles release. this causes more stress on its own, and well back into the hole we go.

I am in a cycle of stress, depression, aching, and discouragement. I have a lot going on in my personal life and it is affecting me physically. I feel like I barely know my own body anymore. I may not be having full blown flares or pain the way I was when I was diagnosed or in the past, but I feel that I am losing my health in so many other areas. I am wearing down, stiffening up, falling into illnesses, picking up the pieces, and starting a cycle all over again.

I try to remind myself that I am strong and that I can do this... I can help show my immune system the way home. I can bring it back and still keep my AS under control. I tell myself this multiple times a day just in hopes there is any chance that I might believe it.... that I might make it true.

I am being worn down physically, mentally, and emotionally due to the cycle of events and stress in my life these days. I won't go into too much detail as they are matters close to my heart, but its been one of the hardest times in my life. I am doing my best to maintain my health, build my immune system, and remain positive. I have begun a starch free diet again. I am hoping that might help things along. I am trying to be more aware of my body, what it needs, and what it is trying to tell me. The challenges of life are never easy, and having an auto immune disease makes them that much harder to deal with and get through. We each have our own battles and no matter how big or how small... we are all fighting something. What we all really need is compassion and patience from each other, no matter the circumstances. Some people are fighting battles you know nothing about.

So, for the past few months... I have been dealing with a lot personally and emotionally, and it has definitely affected me physically. I am aware of that, and well its the first step to changing things for the better. I am hoping that my immune system will return home soon and help me to protect my physical body while my heart and mind try to figure out the rest.

Thanks for your love and support.
Amanda

Stressing Out and Breaking Down

Stress.

Hello… You old Jerk. I thought I was doing a pretty good job of telling you to "Back the @%#$ up" and "Stay out of my life…" But, alas, here we are. We meet again. I knew you would be back… but, man, what a vengeance. You have it out for me this time. Way to take the good things that I hold onto and challenge them completely. Way to take my outlets and make them useless. You know what, just talking about you, helps you thrive in my life. Ugh, I need some mad meditation or something…

Okay, so meditation. I got this. I am into yoga. I have had some amazingly deep meditative states at the end of my practice. I didn't think deep meditation was possible for crazy thinkers and controllers like me, but I have before… Yep, I can do this. Close your eyes, breathe… Deep breath. Where is your breath, Amanda? Hello? Oh, crap. You are holding your breath. YOU CAN'T BREATHE. BREATHE!!! *Whooooosh* What the hell did you do that for? Are you trying to kill yourself? Why is your breath so shallow… and jumpy? Dear, Lord. Is this why you were holding your breath? You can control it… In and out. It's simple. This is simple. *In, in, shake, shake… Out, out, shake, shake…* Why are you shaking. Get this under control! Okay, try holding your breath and see if that helps. Why aren't you breathing?! BREATHE!

Okay, breathing is finally stabilizing. Good. We are there. Wait, are you crying? Are there tears rolling down your face? Yes, there are. Well, there goes the breathing. Okay, I surrender. We obviously need to feel this. Please, just curl up in a ball. We will cry together. I, your mind, will cry with you. However, I should make it know that I don't understand you, Heart. You are making no sense right now… and you won't let me help you… But, I hurt too now. I hurt because you hurt, and you won't talk to me. I will cry with you and we will try again later. Let's just hope the rest of the body doesn't know we are breaking down…

If only I was that lucky. Sadly, this dance between my brain and my heart has been happening for some time now. This is not the time, place, or method that I would like to get into my personal life or challenges… but, for the purposes of this post… all you need to know is that shit has been really tough over the last couple months. I am in a very stressful, trying, and emotional time in my life. I wanted to do everything I could to keep the AS at bay, but my a breakdown has a way of coursing through all your veins and straight into your weaknesses.

Needless to say, my diet went out the window. When you are breaking down… there is something so intoxicating about cookies, french fries… and bad food in general. If you are eating, that is. Its like being at the extreme end of a scale, isn't it? You are either stuffing your face with every toxic, delicious, sugary, bread, horrible thing in sight…. or you can't even look at a piece of food without wanting to spill your guts, stomach acid, and whatever food is left in your system. I have gone back and forth on this extreme scale the last couple months. I am either eating every piece of crap food in sight, or I am not eating at all.

Anyways, my immune system has been all over the place. I have missed workouts, yoga, peaceful and mindful meditation… My hormones have been all over the place… and it was all a ticking bomb. I knew it was coming. I could hear the ticks… but I tried to remain positive. When I have had energy, I did something for me. Maybe yoga. Maybe a bath. Maybe just a laugh. But, last week… my body heard this ongoing crying between my heart and my head and it surrendered. I had a flare.

Oh, AS flare. How you pain me so. Physically, mentally, and emotionally. It has been the last straw on this journey through hell. Luckily, some yoga, some relaxing, some pain meds… and I seem to be coming out of this one on top. It didn't get as severe as a couple ones in the past, and I didn't have to do anything to drastic to get back to an okay place. I am in pain or have pretty severe aches everyday right now though :( Manageable, but annoying and hard. Frustrating. Uncomfortable. Sometimes, I just want to scream… "I WISH MY BODY WOULD ACT IT'S AGE!!!"

I do, sometimes, wonder what other 25 year olds feel. What their aches and soreness are like… If they have any. I mean, if you are active, or sitting at a desk all day, or maybe lifting heavy objects… I am sure you are. But, I wonder how deep that pain goes and what "normal" is. This disease can be so draining, so debilitating, and so so so painful sometimes. I know that the stress doesn't help, and I have my moments of strength, but to be honest with you… my friends, family, readers, and supporters… I am going through a rough time and I am fighting the odds with this disease and continual flares. This is the first day where I felt I could humor the idea or writing to express myself, my frustrations, and the battles of AS and stress.

Stress, hard times, struggles, low periods… whatever you call them, and however long they last…they are challenging. They are the periods we have to fight to get through and challenge our thinking on. They sometimes make no sense at all. You have no reason to feel a certain way, but then again… every reason in the world. We all have them, we all go through them. In different ways, and for different reasons. But not only do I have to find my head and my heart's communication line through a rough time, but I also have to battle the stronger and uglier head of this disease. It sees the weakness in my emotions and wants to attack. I am vulnerable. However, at my very core… I am an optimist. I am a survivor. I know that I will be okay, I just don't always know how or when I will get there. So, this is what I am dealing with. This is where I am at in my journey. And to all of you reading, I could use your positive vibes, well wishes, and thoughts. Thank you.

Love to you all,
Amanda

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