My weakness, My strength

I remember the day I found out I had AS. I remember the exact moment so clearly... I was in my office at work... I had been having intense pain in my sacroiliac joints and lumbar spine for over a year at that point and it had been only getting worse. Some days I couldn't sit up, let alone stand, on my own. I had been calling into work sick more frequently and I had been in PT for over 4 months. The pain still crept up on me and consumed me. I was fixated on something I could not find an answer to. I had recently had two MRIs done and found out I had bilateral inflammation in my SI joints. I was told that this may be indicative of something else, but I was given little information to what that could be. My doctor told me I needed to have a blood test. When she handed me the order, I immediately stared Googling the different tests she had requested on the order. One of tests requested was for HLAB27. When I Googled what this test meant, I immediately found that it was linked to Ankylosing Spondylitis. I read all of the symptoms and immediately thought that is what I have. This is it. I continued reading about AS and became horrified. I was certain that I matched all of the symptoms listed, but surely this could not be my fate... a fused spine? Lack of mobility? Chronic pain? TNF blockers? I was drowning in my own fear before I was even officially diagnosed... not long after that was the day I received confirmation. As I said, I was in my office at work, and I received a phone call from my doctor's office. My doctor's medical assistant told me that I was HLAB27 positive and that, along with my symptoms, it was consistent with Ankylosing Spondylitis. She said that I needed to follow up with a Rheumatologist and gave me a referral. I thanked her quietly and hung up the phone. Do you know what it feels like when you are so sure you know something to be true, but it still shocks you the moment its confirmed? I closed the door to my office and slid down the back of it... folding up into a ball on floor. I cried, I questioned, I feared, I prayed. I believed in that moment that AS was going to be the worst thing that ever happened to me. I believed AS was going to steal my life.

What I didn't know then was that I was actually getting stronger in that moment. That is the funny thing about strength... it doesn't come without weakness or pain. Strength comes from growing and from battling. It comes from breaking down and then choosing to stand back up. Strength comes slowly and from experience. Finding out that I had AS broke me. I felt like I had been robbed of my future. I was so scared of the unknown that awaited me. My physical pain had become an emotional hell. I was so relieved to have an answer for what my pain was, and yet so distraught to learn what it was that ailed me. But, from pain "we can either make ourselves miserable or we make ourselves strong... the work is the same." I was scared, in pain, and confused... but, my reality wasn't going to change. I could be miserable from my pain, or I could be strong because of my pain. I didn't know if my strength, efforts, or optimism would be enough... but it was all I had in that moment. I felt so much on the floor of my office that day, but the next day was about action. Okay, I have AS. Now what? How will I handle this new life? Because the truth is my life was not stolen... it was changing. Was it possible that I could have any control in how it was it was going to change?

I once read that "a river cuts through rock not because of its power, but because of its persistence." AS is not something you muscle or power through... it takes persistence. Persistence in staying mobile and active. Persistence in remaining optimistic and positive. It requires persistence to keep going even though there are battles ahead. That persistence will build the power that keeps you going, keeps you mobile, and keeps your body from fusing... at least I hope it does.

It is interesting talking to people about AS and my prognosis. Even just tonight I was asked, "What does that mean?" In the simplest form... it means I have an inflammatory arthritis that attacks my spine and the surrounding joints. It means chronic pain and flares. It means varying degrees of symptoms throughout my life time. It means the possibility of my joints fusing and the loss of mobility. It means meeting with a Rheumatologist multiple times a year and blood tests 3-4 times a year. It means anti-inflammatories and possibly TNF blockers one day. It means experimenting with diet, vitamins, herbs, oil, and every other "cure" that people recommend. It means lifestyle changes, stretching, and restless nights. It means fatigue and caution. It means physical therapy and soreness. But it has meant a lot more to me as well... It has meant patience and perseverance. It has meant motivation and a greater awareness of my body. It has meant committing myself to an active lifestyle and becoming involved in active communities. It has meant being grateful for my mobility and dedicated to maintaining it. It has meant taking my weakness and making it my strength.

Finding out I have AS was horrible, but it has led to some of the best things in my life. I practice Iyengar and found a yoga community I love. I hike more, bike more, and enjoy the outdoors more. I challenge myself physically, but also have more understanding and know when my body is telling me to back off. AS has helped me create connections with other people who have this scary and challenging condition. And now? I am motivated not only to better my life with AS, but the lives of others who suffer from it.

In 11 days I will be biking up Pikes Peak with 10 of my best biking buds. We will trek 12.5 miles to the summit and gain just under 5000 feet in elevation before heading back down. I am biking to challenge myself physically and prove my body is capable and strong, despite its weakness. But even more than for myself, I am riding for everyone else that has AS. Especially those who have severe pain and can barely move. Those who struggle to get out of bed and those who cry themselves to sleep. Those who have lost jobs, relationships, and hope... Those experimenting with drugs and suffering from the side effects. Those scared and tired. Those who have fused and those who fear it is coming soon. Those who think mobility, drive, and energy is out of their reach. I am riding for those who feel alone and feel that there is no other way of life with AS. To those people, I am riding for you.

I want you to find strength and believe in yourself. I want you to know that I have AS and I believe more than any diet, any drug, or any supplement... my mobility is saving me. Some days I am too sore, I am too tired, and I feel helpless. And I know that that is when I need movement even more. Strength comes to those who want it. Maybe you won't be biking Pikes Peak any time soon... but strength is what you make it. Yes, you have a weakness. You have a challenge. And I know you have pain. But you have got to keep moving forward. Try water therapy, physical therapy, walking, stretching, yoga, biking... Start somewhere, anywhere, and believe you can... Believe it can be better. Your mindset can change everything. You may be on the floor now, but where will you be tomorrow or three years from now?

So, to my friends, family, supporters, and fellow AS fighters... Please donate to Spondylitis Association of America in support of my ride up Pikes Peak on July 25, 2015 (Donate at www.crowdrise.com/spokesforspondylitis). Lets help SAA fund research of spondylitis diseases and raise awareness in the community. But even more, let's grow in strength. Let's help people believe that their weakness, their pain, and their fear will create their strength and perseverance tomorrow. We may not be able to cure AS, but we can change how people look at it, especially those who battle it everyday. Lets change the face of AS, let's make it STRENGTH!


To better days and strength ahead,

Amanda