Learning to Never Say Never: Facing the Hurricane Within

After 8 years of battling autoimmune arthritis the one thing I’ve learned is this mess will always surprise you. Never think you’ve found the most annoying symptom, worst pain, or most exhausting symptom because Arthur can and will find a way to give you something new that beats the pants off your prior record breaker.

Autoimmune arthritis is always evolving because it’s a war inside of ourselves. Our immune systems go hungry for something to do, something to attack, and that hunger makes it crazy sending it to attack what should be its allies inside us. This disease has no end to what it will snack on mindlessly like a zombie.

This makes the situation increasingly frustrating as our lives move forward and captain crazy pants Arthur grows. It moves from joint to joint, from soft tissue to soft tissue infiltrating every part of the body that houses your soul. Nothing is beyond Arthur’s reach. Things you though would certainly be safe from this disease’s wrath are not, parts you thought couldn’t hurt do, and that extra sleep you got the last five days straight doesn’t cut it.

This is why I’ve stopped quantifying and classifying my pain levels, and annoyances. I’ve been taught there are so many types of pain and most people will be privileged to never experience the full bouquet enough to know the difference between rosey joint pain, ivy nerve pain, and lily of the valley muscle pain. This puts us in a sad position of being alone in a world full of people, often feeling like we are shouting in a crowded room of deaf people. It is not that people can’t be empathetic or try to be understanding it is that most people have nothing to compare our situation with. They simply cannot mentally grasp the situation because their experiences have nothing that encompasses the breath of our disease state. Instead their empathy becomes pity, contempt, sadness, etc. for us when we simply want to be understood.

This lack of ability to understand is why so many with these diseases become frustrated because they have no outlet of understanding or camaraderie. This is also why it is so important we put our stories out there to spread awareness. The general population understand cancer is awful because it kills people, they do not understand autoimmune disease because it has been shoved into the shadow of misunderstanding. They view arthritis as that pain you did to yourself, they don’t understand we did not consciously do this to ourselves this is a war we did not choose. This war inside my body is charged by a crazed leader with zombie troops that don’t know any better. My pain is not that one bad knee my friend has its both knees, my back, my hips, my ribs, my muscles, my nerves, my eyes, etc.

This disease isn’t just about joints it is about the whole body. Anything that is soft and digestible to Arthur is a war zone. People do not understand that this is literally a war we are fighting every day. It is not just our joints that are casualties but our eyes, our tendons, muscles, ligaments we are being eaten from the inside out. We are being torn apart by a storm that cannot be seen a hurricane from within. The medical community wants to harness that hurricane and shut it down but all it has is sand bags and evacuation strategies there is no way to truly stop the storm only ways to batten down the hatches and hope for less destruction through preparing for the storm that never ends.

This storm inside me isn’t completely negative though it has taught me a lot of amazing things because I was lucky and had the support to get there. It has taught me what matters, and who matters. It has taught me to put myself first. It has made me stronger than I ever imagined I could be. However sometimes I still feel isolated and frustrated because these gifts were not really a choice but forced upon me. The alternative was to curl up in a corner and cry myself into the abyss.

No matter how many people I meet in similar situations, how much awareness we raise, how many great doctors/treatments we receive, or how many great supporters we have this battle is still ours alone which is isolating. Furthering that isolation is the constant evolution and progression. Never say never to this disease because it will prove you wrong. In my 8 years back pain which I thought was the worst pain imaginable moved joint by joint through my body each proving more frustrating and aggravating than the last. Perhaps that was the newness of each movement or the growing number of systems affected. I found joints I’d never had like my ribs breathing without thought is a gift especially in the morning or running when you struggle from pain you realize how amazing our bodies are and how fragile at the same time. I found we have joints in our larynx your ability to speak again a miracle. I found this disease has no mercy if it is soft it is lunch. When I developed sensory neuropathy that was annoying as I struggled grasping objects and with new-fangled touch screens that daunted me, but again there is always something more annoying. The disease moving into my bursa sacks causing stabbing pains, or my ligaments/tendons causing swelling after exercise. The muscular attack causing my body to react against the running I loved locking me up after workouts. Currently it is my eyes I lost the ability to produce the oil layer of tears. I’m constantly putting in drops like a pro to just be able to see due to eyes so dry my vision becomes scattered. To top it all off there is the fatigue that makes the already exhausting pain and annoyances seem a thousand times worse at times.

Despite all of this I do have hope. I believe in a cure. I believe the current treatments, and my emotional support system has made my life better. I believe my getting this mess was for a reason to help others live fuller lives with these diseases as well. No annoyance, pain, or exhaustion will stop me on the road to my own dreams.  I hope that road encourages more of us to continue on our individual paths of hope, prosperity, and happiness. The truth is happiness is a choice, and I refuse to let this monstrous war inside me forget that I have the choice to smile despite it. I am thankful every day I have and for those who keep me going in my worst moments. My life may never be easy again but I plan to make every moment I can worthwhile. 

Captain Angry Bones