Lifting the Fog on Running with Rheumatic Disease

I think it is often difficult for people to understand running high mileage with rheumatic disease. There are more and more of us participating in endurance sport with these diseases which is wonderful because it is building a community that does understand what this entails. However we are still an anomaly often rallied for in our community of similarly stricken people, and miss understood by the endurance community as we shuffle our schedules to accommodate disease. Furthermore that misunderstanding often stretches into the general population as we aim to inform others and advocate for people who simply can’t do these things that we often sacrifice the showing the severity of our own battles.  Simply put running with rheumatic disease paints a beautiful misleading picture over a war-torn battlefield.

One of my purposes is to remove the façade over the battlefield so that people see the truth. Just because we run does not mean our pain is less. It does not mean our disease is less. It simply means somewhere inside of us we are fortunate enough to push past those obstacles. You can’t compare our disease or our pain to someone else’s because not only is it not the same we are individuals and how we handle that war inside ourselves is different. When you see one of us “winning” know that what you see is a front. Every one of us faces a battle with every run, bike ride, or swim knowing this can come to an end at any time. We don’t enjoy these things because we are pain free we enjoy them because they are liberating and many times they are a way for us to mentally handle the battle inside.

 

Right now I am past the “Can I run again” phase and in a “build” phase.  This means I am actively adding mileage and strength training. I’m starting to push towards dropping times. I am pushing my body to become stronger and faster. I am readying for the full training phase with heavy speed work and high mileage. This makes people think I must be better. I am not better, and I will never be better. I spent four months terrified I’d never run again in a capacity to achieve my greatest goal a Boston Qualifier. Every run I have makes me a little stronger but my build is slow and my heart still worries about that little dream because I know it will be more work that I’ve ever attempted in running before. I know in the past less has shredded me. I worry I will never be capable. Furthermore I know inside that this time is different. A piece of me was taken and I’m working with less ability to achieve, but it has been replaced with something greater more heart and drive.

I am not better in fact my disease is extremely active right now. I have a remarkable ability to “hide” my pain from myself. Running and strength training allow me to further do this by helping to self-flush some of the inflammation and filling me with endorphins to ignore the lingering ebb of discomfort deep seeded in my bones.  I run in this state because it is who I am, and it is how I handle the mental, emotional, and physical torment of having my immune system actively attack my spine, hips, hands, feet, etc. I run right now because I feel time is fleeting and I have a dream that I must harness. I run because despite it activating my situation further my doctors can’t make good decisions for my long term care if they don’t see the full battle in front of them.

Running and building with active disease agitates the disease it is essentially like setting off a nuclear bomb. You see what looks like a blazingly beautiful comet. You don’t see the destruction or the mushroom cloud that is what my doctors are looking for. They want to see how big of a bomb are we dealing with so they can in turn build a bigger bomb to send and take out the enemy my immune system. I am the one sitting in the rubble pile trying to make you see the comet not my rubble. However I have to be honest with myself and my followers if you don’t see the destruction than my purpose in making people understand rheumatic disease fully with my running is not being shared to its full potential.

Where am I at physically and where is my running currently? I am well into the build phase running, and I’m within a month of entering full training mode. I am running 3-4 days a week, doing yoga/Pilates, and a variety of weight training. I am cross training too. I am doing all of this unbelievably tired. This exhaustion has been here for months it never went away from last winter and it is hard to push past. There are days I am so exhausted I feel like my whole life is a fog. I feel like a mindless numb zombie. I can’t even explain how stupid I feel at times and how I feel I am missing things due to this crippling exhaustion. My hip is doing better thanks to biweekly resetting, massage, and core training. I no longer feel like I have a sword inside as I go down the stairs or with every step I take when physically tired. However there is a pain I feel at times on my runs now that I never had before its inside my hip and its deep. This is likely due to damage I have been afraid to go to my second consult and face. My back has been a mess too. My lumbar spine along with my SI joint has been becoming increasingly angry, and this started before I started running again. There are days where I manage to muffle pain all day in a fit of zombie exhaustion to come home and within an hour feel like a train derailed on top of me. My whole body just quits and waves of pain crash hard like a hurricane on the shore. There are days where I can feel every vibration when I drive my car in my tailbone and pubic juncture. It’s a strange pain that’s like pulling a rope apart strand by strand or rubbing things together aggressively. It pinches nerves and it is one of the pains I can’t sleep through often leading me to grab medication or a lidocaine patch to just sleep it off. There are days where I wake up when I am near infusion and my ribs feel like they’ve been crushed by a trash compactor. Some of those mornings it takes me an hour to get to a point where I can breathe normal. My tendons are tight from hip to knee. When I run I have to go early or very late or the sun cripples me making me almost vomit. I can’t get over how horrible my sun reactions have become in the last year.  This is my life right now and there is no fast fix for it so patience and the love from my family are what get me through the rough moments, and running is what gives me peace and a dream to reach for.

 

 

Now that I’ve lifted the fog I want you to know I do not want your pity, my battle is no greater than anyone else’s. Each of us faces battles in life and there is no comparison being it weight, depression, cancer, autoimmune disease, etc. Each battle is unique and each can have equally devastating consequences. What I do want is for people to know is beneath the surface there is a whole other world many can’t even comprehend. Running is simply a way for me to handle it, and a way for me to give back. Running is my passion and my dreams. Running is not a sign of I’m doing awesome right now, it’s just how I outwardly deal with my mental and emotional battle with my own self destruction. For every one of us lucky enough to be able to mentally push past this and swim, bike, or run there are many who can’t and some who are disabled. This isn’t because they lost their battle or because their battle was worse it’s because they are different and their disease is different. We each fight in our own way. Some people use crafts to mentally deal, charity work, or other means. They battle the same type of monster in a different capacity. The important thing is that we have outlets.  I want the world to understand the lucky of us are able to deal in a physical way with this battle inside that can’t be seen. We are the warriors of invisible illness and chronic pain. We battle together yet separately in hope for a better future.  We aim to bring hope and understanding. Ultimately we hope to live the best life possible despite the circumstances we were given. We aren’t endurance athletes because we are winning our inner battle we are endurance athletes because our disease has shown us that we are strong and have nothing to lose.

Where is Captain Angry Bones?

Over the last several months I have been silent and MIA on many of my pages. The reason for this is I have been going through an extreme amount of change in my life.

My health care, and running has been up in the air since the start of the year which put me in a very difficult place emotionally and mentally. At points I had almost given up my new mission “Bad Bones for Boston” even before it started. I have to thank my family, friends, and rheum mates for getting me through some very physically painful, emotionally harrowing, and mentally depressing months. I am now thanks to the love of many people ready to step out and share what this year has been and show you the road map I have for the coming 18 months.

I am sorry for not posting race recaps for January’s first marathon during the Goofy Challenge, or February’s Glass Slipper Challenge. The marathon for me was an extremely amazing experience. It gave me the belief in myself that I could qualify for Boston. I ran both the half and the full here bellow paces I was capable of due to myositis in my feet. My finish in the marathon I cried of sheer joy for I had finished a race I had coveted for 7+ years. No matter how ugly that face looked it was joy as the tears streamed down my face. I finished both strong and left Disney happy, confident, and ready to announce my campaign for a Boston Qualifier. February’s races were an entirely different story that started the downward vortex from the strings that had already started to unravel with my conditions. I went to Disney proud that I had raised over $1000 for Children’s Miracle Network, excited to wear a shirt with the names of children who had arthritis like my own on it. Over the months leading into the Glass Slipper challenge I had fought hip pain, hip bursitis, and myositis. I ran my 10k faster than the year before but comfortable. The following day however disaster struck and my spirit was crushed. By mile 4 of the half I knew the entire race was going to be a suffer fest for me. By mile 8 I knew my finish time was going to be my worst ever. By mile 12.5 I knew I was going to go down at the finish. It took all I had to continue running and get across the line. When I went to switch to a walk my body did what I expected and my right hip folded out from under me at which point I screamed in agony. I had given everything I had and finished that race in tears of agony. Sometimes finishing our hardest races are the ones we are the most proud of. Although I still cry when remembering this agonizing finish I am also proud that I had the ability to push through pain that was agonizing for the children I was representing.

Spring came and I hoped to finish out my spring running season with another marathon and a series of races in 5ks, 10ks, and half marathons. This was not to happen. My runs became increasingly more painful and impossible to complete. A hip bursa sack injection was ordered. I pulled myself down from running, but each attempt to come back became worse. I eventually could not even walk without agony. X-rays, and then an MRI was ordered. What was found was a tear in my Hip Labrum. I was sent to a high ranking Orthopedic Clinic, and there they told me this was caused by enthesitis (inflamed tendons) which in turn was caused by my condition. I was ordered into physical therapy, for a CT scan to assess my bone damage from this assault, and to have a cortisone injection in my hip socket.

During this time I hit absolutely rock bottom, and the doctor who had been taking care of my disease for the entire duration (10 years) put the final nail into my proverbial unhappy coffin when he told me to quit running. My heart was shattered. Here was the doctor who had rallied me for years telling me I was strong enough to finish my century ride, that he would help me get to Boston while injecting my hip bursa full of cortisone, and who had started me on step up therapy when many other doctors would have probably told me I had nothing wrong with me turning his back on me and ripping out the core of my being. I had to make the toughest decision with my disease and fully walk away from this doctor. I did not know where I was going to go but I was hurt and insulted. I left the office in tears.

I do want to say although my break up with my old rheumatologist was ugly I am thankful for everything he has given me. He has saved my bones in the face of a slowly progressing now aggressive monster inside me. He treated me early when many less researched doctors would not have. He diagnosed one of the rarest forms of arthritis in me one many do not know exist. He believed in me when I started my racing. I truly believe he still does believe in me my case and my dreams just got too big for him or his practice to handle. I am thankful for the 10 years he helped me fight though because without him I would not be running at all.

Summer came and it brought with it the hardest uphill battle I’ve ever had to get back to running. I started physical therapy in June with a wonderful therapist who finds me to be a pesky crazy runner, but I believe will be a friend for life. In July on the 4^th I declared my independence from this disease and started the long uphill back to running. This come back is my slowest, hardest, and most painful. This comeback is during an active disease state something I have not had to do before.

In July I also started with a new rheumatology team who is gathering all the records from the many doctors who have been seeing snippets of my diseases. They have advised me changes are coming my disease is not where it should be despite clean radiographs and bloodwork it is active. There were actually 5 doctors advising me that my condition was not where it needed to be when I made my very unhappy break from my old rheumatologist. My husband is the one who found my new rheumatology practice when I was too hurt and upset to even look. He took the time to read countless reviews to find a private research practice that could handle my case. I am thankful he believed in me when I could not believe in myself.

Now that I am slowly coming back to running my heart is at peace. I can see the long hard dirty road ahead. I can see the horizon I want to shoot for. My dreams of qualifying for Boston are still there. I’ve decided to go ahead with my plans and I’ve started “Bad Bones for Boston”. Through this campaign I will blog, vlog, post on my facebook page for awareness both my glories and my agonies. I will attempt to raise $5000 for arthritis research through the Racing for a Cure team. Starting in January I will return to Disney to run the Marathon, which I will use to adjust my training towards obtaining a Boston Qualifying finish. During the 18 months following this race I will run another 5 marathons for a total of 6 to try to obtain this goal. My hope is that through sharing my experience I will be able to inspire others to live big lives in the face of adversity.

Angry Bones