Johns Hopkins Field Trip: 1 in 7 Billion

On Friday October 3^rd I went for a consult with the world renowned Johns Hopkins Rheumatology and I want to say they are fantastic. Their care and attention to detail were excellent. My entire file had been read prior to my arrival. I came prepared with a list of questions, and they had theirs too because my case is interesting and highly unlikely. I learned a lot about my own condition, gained a lot of relief, and was given hope.

My case is interesting for JH because I am the first with my two diseases in conjunction. The file that came to them was littered with information that would be overwhelming to many doctors a case of one very rare disease and one not so rare but under unusual circumstances. I have Enteropathic arthritis from Celiac disease as my first condition. Enteropathic arthritis itself is not that unusual in a crohns patient but a celiac its not common, and its rare in a patient on the diet. I came in believing that my PsA was what drove the EA, but found out no they are both driven by their own individual mechanisms. My PsA (Psoriatic Arthritis) was differentiated into the spinal version. I want to be clear celiac and psoriasis are not rare diseases and psoriatic arthritis is not a rare occurrence up to 30% of those with psoriasis will sadly develop one of the five types of PsA. One thing that does make my PsA interesting is that I do not have the HLA B-27 gene seen in 60% of PsA patients with the spinal version. EA in celiacs is only seen in 5% of the patients, and of those less than 2% of the cases will become refractive (independent of the bowel disease). Psoriasis and Celiac have entirely different mechanisms of immune reaction and different genetic markings. This means having the two in conjunction though possible is unlikely. JH spent a great deal of time reviewing my symptoms and the family tree to figure out though extremely unlikely I in fact did have the right genetic variables and presentation to have this rare anomaly never seen before a Celiac EA case combined with Spinal PsA.

What does all that mean medically? It means I have one form that goes after peripheral joints but is in general none destructive to boney masses but can eat away at peripheral nerves. I have another form of arthritis that goes after my spine, pelvis, and ribs that is potentially destructive over time. Another piece of the puzzle is that the spinal version can cause eye problems, tendon issues, and bursa sack problems. Combined these two can cause other symptoms alone would be unlikely like muscle cramping, vocal issues seen in advanced RA, sjogrens like problems, and other strange problems. Together that means I do not have Fibromyalgia which I had been previously diagnosed with since those symptoms are actually attributed to problems from one or both of the diseases I do have. It also means if I do have Sjogrens it’s another primary autoimmune disorder which could be a problem so they need to test to make sure, but the hope is those problems are again two intertwined diseases doing their worst together and apart.

As nasty and unusual as this all sounds it is actually the best possible outcome I could have had because it means a good prognosis. Spinal PsA cases can often be held at bay for years with proper treatment putting the damage at a crawls pace. These cases are also more likely to fail drugs than build antibodies against them. The EA portion can be put into remission with heavy doses of MTX in shots which will also keep the antigen dispensing celiac from allowing my body to fight against the drugs. The bottom line is a remission is very possible and hopeful if enough drug is given. Johns Hopkins believes my local rheumatologist though nervous about giving too much drugs has done well with my case and a step up approach. However its now time to snuff the beast because it is angry and advanced and that will be done by adjusting my current medications in timing and possibly dosages.  If this does not work they will attempt a new drug protocol to push Arthur back. 

JH hopes to form a working relationship with my doctor who was wise enough to recognize a rare form of Celiac EA most would miss and then not knock it off the table when the PsA was found. They hope together they can treat this so I don’t have to make a haul of over 100 miles to get treatment. If my local doctor is willing to work with them my case benefits from the recommendation of higher treatment due to the complex nature of two very different diseases working together, and future patients receive the benefit of my case being followed. It’s a hard path for anyone with a disease like autoimmune arthritis to find understanding for what they fight, but now I know my own fight at this time is literally 1 in 7 billion. That number is staggering and frightening, but I trust that if anyone knows what to do JH will and that gives me comfort that the best of the best is in it with me for this fight. No one wants to be the guinea pig but if my situation helps another live a better life I freely open it to be followed, I maybe the first recognized on this path but I will not be the last.

100 Miles 100 Tears of Joy

One of the reasons I love to run is some of my greatest epiphanies happen on my runs. Over the last two almost 3 years my running has been cut short. Today on my 3 mile recovery easy run I realized I would hit 61 miles today the 19^th of the month putting me on track to top 100 by the end of August.

If you are not a runner the idea of 100 miles may not really impress you. If you’re an arthritic runner the idea of 100 miles in one month may floor you. 100 miles is a lot of training its 25 miles a week. Most runners run paces between 8-12 minutes a mile. I run about 9 minutes on easy runs this means 25 miles will take me 225 minutes or 3 hours and 45 minutes. In 4 weeks I will run 15 hours. That’s a lot of running!

This little epiphany sent me to the point of happy tears. The last 3 years I have had heavy battles. Its been almost 4 years since I had a 100 mile month it was before I broke my leg in 2011. The months where I ran this mileage was sparse then too: I was not as advanced as I am now in the sport and I still had my growing arthritic battle.

Over the last several years my condition has forced me to focus on quality over quantity. This means pushing as hard as possible in my workouts with what structure I had to make the most gains. Now I am capable of carrying moderately high mileage and harder workouts my body will reap even greater rewards than the amazing ones I got with <25 miles a week.

For the last 3 years I’ve played the game of trying not to anger Arthur or trying to recover from his wrath. Constant rounds of prednisone to knock my disease back losing workouts to the disease. Not able to run more than 3-4 days a week and only 1-2 mid/high mileage days cost me mileage that could have been structured to make gains in performance.

100 is a magical number it means your body is capable of high mileage it’s the base to building amazing running. You can train for a marathon running 100 miles a month, but I know my training this round will push me to closer to 150+ in a month or so. I am truly excited to see that I’ve never been capable of running more than 30-40 miles a week. Going into this training that mileage scared me. This first base month with a coach has showed me body can and will put up with that mileage now. I do still lose workouts that my healthy counterparts don’t but they are far fewer than in the past. My body is not just surviving these miles it is thriving in them!

Facing I will run over 100 miles this month is sheer joy. I have remicade to thank for this. Although I get 2 rough weeks every 8 cycle, I can handle it because it is far better than I felt before this drug. The reality is a real remission is very unlikely for me, but this state of stability is fantastic. I can only hope it continues for as long as possible. A year ago I was facing injections in my hips. A year ago I was terrified I couldn’t run a marathon. Last October I was scared I’d never run the same way again. I kept running because I love it not because it was pleasant. Now when I run it is much easier and for that I’m grateful. I’m thankful to be on a protocol that keeps my body from fighting me every step I take most days. I’m thankful to have the joy of running again. I am blessed to finally reach 100 miles after 3 years of downward spiral.  For all of these reasons I shout with joy because it’s the small miracles like this that make the greatest most profound impacts on our lives. Be joyful in the moment that is given and the battle well won. My battle continues but for now I will relish the fact that I’m able to finally enjoy many of the miles I love so much once again.

Broken by Boston to Build Stronger

Yesterday I was dealt a blow that hurt me more than I expected it would. The Boston Marathon Athletic Association announced their charity partners for 2015 and the one I am partnered with (Arthritis National Research Foundation) was not one of the charities selected. My heart was crushed as a runner Boston is the marathon to run, and I had been told to not attempt a qualifier due to the rigorous training with my condition. After only a few minutes of thought and some conversations with my mother and husband I realize there is something bigger out there meant for me than just going via charity to Boston.  The truth is everything has a reason and there is perhaps a huge reason why ANRF was not chosen and it had nothing to do with its size, location away from Boston, or my personal story not being enough. I feel that perhaps is something much greater working here, and though I am not sure what the reason was yet I have my suspicions that I am being asked to step up into bigger shoes.

I rarely talk about my personal religious beliefs. I believe religion is a relationship between you and what you choose to identify with if you choose to identify with anything at all. Like a marriage I believe certain things in that relationship should be private and this not my lack of belief in god is why I don’t talk about it. Last night’s blow however made me realize that my god is potentially telling me I am worth more than just a Charity bib, and that maybe I am underestimating myself. Don’t get me wrong god could just be saying 2015 is not the year for you, or that I may not even be able to run a marathon with the strength necessary to do another after the ones I have scheduled. One thing I do know is that there is a reason for this blow, and I have belief that it is not a negative one. I believe that the things in life that knock us down are meant to be used as stepping stones for growth, and this is why I believe god is telling me you are worthy of more than this.

To further my belief that maybe I’m being told that I’ve been sold short is the fact I now have a coach who with only two meetings one of which I actually ran he seems to believe that I have been sold short.  He believes coaches haven’t been willing to push me. He believes I have a great love of running, passion, and ability to match but my confidence is lacking. My training though ok to get there has never been structured enough to gain the results I am capable of. The truth is I was too nervous to hire a coach in the past due to fears I would crumble. My lack of confidence due to my disease and my complex medical problems allowed volunteer coaches to not push me to my greatest heights. The truth is I have been sold short by myself and allowed others to do the same. Through focus and structure I can be a much better runner than I am but I have to change the way I think and work hard to get there.

To top off the lack of belief in me as an athlete my doctors have not helped. I have a team of doctors who were nervous when I started running; they are just now accepting that it has helped me on a lot of levels. That acceptance doesn’t mean they don’t continue to worry about wear and tear over the years on top of my condition.  This is the reason they’ve told me to not attempt a Boston Qualifier because last year in training I threw my hips out, and the spring prior my knees went nuts. They are not willing to clear the high intensity training because of this.  Maybe this thought process needs to be disregarded because the truth is it is not my fault I fell apart last year I had a condition that was in downward spiral out of control for over two years. Since the start of remicade I’m certainly not in remission but I am stable for the first time in almost three years. This is an entirely different situation than when I attempted a low grade marathon training plan on last year. Furthermore this year I’m not attempting the marathon on my own but with a coach who is taking a plan and will modify it to get the best out of me. I have to remember I am swimming uncharted waters with this disease and I have let my doctors like myself sell my abilities short.

I will not know until I get through this marathon training if my suspicion is true, but right now I’m going to hold the belief in my heart that the lord is telling me to prepare for a storm. The storm is the attempt to Boston Qualify. All I can do right now is focus hard on this training plan and see where it leads me. If I hold against this wind I march forward into the eye of the storm. It is time for me to batten down the hatches and stand up to the storm not evacuate like I have in the past. It is time for me to see if I can hold against the first bands of wind and rain and if I can hold strong in this training then my first marathon it is time for me to do what I do best and not take no for an answer.

The simple truth is I feel I’m being told it’s my time to take a stand. Boston you may not consider our charity worthy enough to be on your bill board, but we are. To my doctors you may not think I am strong enough to do this but I think you have sold me short. I won’t know for several months yet but for now I need to hold in my heart the belief that I am being told a lie and that I am worth so much more than this lie. I have to believe first to get my dream that not only am I worthy to run Boston despite arthritis, but that I am able to prove that I’m capable. So though I am not announcing yet my intentions to Boston Qualify, my heart is telling me listen to your body if it works with you this training season don’t listen to the nay sayers just push onward. It was the simple answer of “No” that drove me into endurance sports and now maybe it’s the simple double “no” that I need to excel as a runner.  It is time to work hard, push for results, and believe in the purpose that I am not just worthy I am capable and I am not just an arthritic. I am a runner to the core and this disease is not my master, my life can help others. Even if I can’t have my charity on a master list I can raise funds and show everyone in the process that I am what Boston was made of. I am worthy Boston and though I’m not ready to say it quite yet, just know in a few months you may just get my scream of “Boston Your Challenge Has Been Accepted”.

Running My Biggest Dream: Marathon Announcement

I am officially announcing my intention to run the Richmond Marathon in November as my first full marathon. I make this commitment approximately 1 year after my condition began its wrath to destroy my first attempt towards the marathon last October. Today I embark on a journey to concur my dreams, defeat fear, strengthen my soul, and push my mental fortitude. Today I start on the home stretch towards running my first marathon. I say the homestretch because the decision to run this race, to pick a coach, and to finally march 100% into this training for this fall is one 7+ years into the making. It is not out of laziness, lack of will, lack of belief in myself, lack of training, or lack of metal fortitude that made me unable to complete this goal until now. It was lack of other people’s belief in me with my condition, and then the failure of my own body that have made this journey so long and arduous.

My journey to this marathon began in 2007 when I started running 5ks. I loved the 5k. It was hard because I’d never identified as a runner. I was slow running 12 minute miles but I got it done. I was also arthritic a very early case, but a diagnosed arthritic.  Seven years ago things in the rheumatology industry were different doctors believed in not stressing the joints they believed in saving them through rest. It is funny that since then we have found that you are more likely to save your joints not with rest by actually moving them. Part of this discovery was led by people like myself who wouldn’t take no for an answer.

That little set of 5ks I ran at turtle pace tested me and it made me ask the question “How far can I go?” It gave me friends with healthy running lifestyles who accepted me and pushed me forward despite what my doctors were telling me. I watched these runners in awe as they ran sub 9 minute paces and marathons. Like a child looking at its mother I said that’s what I want to be when I grow up.  I approached my doctors in 2007 with the plan to run a full marathon in 2008. I mentally could not get past running 5 miles at the time so perhaps this idea was crazy. I did not know how I would get to 26.2 but I was determined to run a marathon. 

Knowing my health would be a concern I approached my doctors, and the rheumatologist flat out told me no so fast I didn’t have time to finish my questions or blink. I could have simply walked away and said I can’t do this because my doctors told me no.  However being diagnosed at 25 with arthritis changed the way I viewed the world and I wanted to live with no regrets. I wanted to push myself and be as healthy as I could be as long as I could because I knew time was not on my side. Instead of accepting no I bent the rules, and bought a bike. I found a training program and came skipping into my next appointment full of joy announcing “You said no marathons, but you didn’t say no to 100 mile bike races!” You can imagine the frustration of my doctor whose head just dropped and as he shook it suggesting no grumbled in distress and he stated “Just don’t fall off the bike.” You see he did not tell me no because he knew in that moment that I would not give up and that I had the will to see myself through.

That first endurance race was the drug that got me hooked, but it was also the training that almost destroyed me. A funny thing happened during this time my doctor who was distressed became my greatest cheerleader. When I had my moment of cracking thinking they had been right and I would give up it was that very doctor who told me I was not battling miles but a chronic disease. He told me I was strong enough to do this and made a medical plan to get me there. I cried at the finish of the 109 mile El Tour de Tucson in 2008 and in that moment an athlete was born.

The century ride was the first of many races I would do over the years. I went on to do a triathlon the next year concurring that 5 mile mental barrier finishing 10ks and 8 miles. I continued onto 10 milers, half marathons, and even a half ironman triathlon. Despite this one distance daunted me asking to be concurred the 26.2 marathon.

Last year despite my health I had been given the go ahead to finally train for the marathon. Despite that my condition got the best of me and 10 days before my marathon I was pulled. My longest run was 16 miles in blistering heat with searing pain. Despite the pain and struggle I was destroyed to be told no to my great dream.

The truth was that the marathon I had intended to run in October 2013 was the first of a series of five I’d run in the next 12 months. I was projected to run very close or just under the 4 hour mark, and ultimately my goals were much higher than a single marathon. I’d spent years watching my friends run a distance that I coveted as my own. Those years they strived to not just run the distance but run it at a pace known as the Boston Qualifier. Some of my friends through dedication and hard work snagged those times. As my run times began to slide and significantly dipped in the spring of 2013 I saw the possibility of not just running a marathon but running the most prestigious marathon of them all Boston. I’d settled myself into the mentality of work to make that qualifier a reality within a year of my first marathon because I knew having arthritis time was not on my side. Time proved me right it was not on my side so after being pulled down I was given a second assault in the order to not attempt a Boston Qualifier.

You can run a marathon with averages of 30-35 miles a week and peak weeks hitting 40-45 miles, but to qualify for Boston most athletes will have to run at least 50% more than this. It is not just the number of miles it’s the quality and type of miles you must run as well. Instead of doing 4 miles of speed work you might do 5-8 miles of speed work. Instead of 20 minutes of hill repeats you might do 45. The running training in its own right is brutal but to ensure a quality strong fast run you have to focus on your mental ability to deal with pain. You must work your core so it is strong, build muscles, and then your nutrition must be top notch. Unless you are a Kenyan qualifying for Boston is 90% training and 90% blind luck. The training comes from the obvious hard work often assisted by a coach which I was willing to pay for. The blind luck means you don’t have a freak accident, bad weather on race day, and that the day of the race works with you and your run. Qualifying for Boston you give 100% and hope that the day will equally give you 100%. I’ve seen countless athletes miss the finish time required for Boston by minutes, and others miss despite training runs stating they would press forward just because the day did not work for them.

Despite being told this no to qualify I am still determined to go to Boston. Right now I am anxiously waiting to hear if I can and will run the 2015 Boston Marathon. I’ve requested a charity for Arthritis make a bid for bibs. The charities that will have bibs will be announced this week.

Whether I go to Boston or not I decided this spring to cross another big item off my bucket list the Goofy Challenge at Walt Disney World. This challenge is a half marathon followed by a marathon the next day. I have no intentions of running this marathon for pace due to running the half the day before.

Due to the prospect of Boston and the Goofy I was stuck with a tough situation. If I was just doing Goofy should I let this be my first marathon and just take it as it comes? I have succeeded at multi day challenges before so Goofy was not a fear in this realm. I would like to go into the Disney Marathon strong however which means running a Marathon in the Fall would be my best bet to guarantee I know what to expect. When rumblings started to watch for the Boston Charity announcement from the charity I contacted it became even more apparent running a marathon this fall may take precedence to the dream of running a <2:00 half this fall. If I run Boston I want to do it strong. I want to show arthritics are resilient and that no pain or disease can hold back a strong heart and mind. This means I need big miles I need to be acclimated with the distance. I can’t go into one of the most difficult prestigious courses with no real marathons under my belt. I need to go with confidence, because though I did not qualify I am not slow. I also am arthritic but I am not weak. Running Boston for Charity becomes bigger than my dream I become the image of the dreams of others and the face of a charity for those people who can’t run. I become an ambassador which means I bring my game shoes not my playground shoes.

Despite this knowledge making the decision to run a marathon this fall was difficult. It meant possibly losing the <2:00 half until late next spring. This was a big goal for me and had been on the table since 2013. It meant toggling my schedule with my upcoming wedding. It meant facing my fears. Yes I said my fears, and those fears were so great they were terrifying. My condition took something from me last year. I’ve yet to recoup my times from Spring 2013, or lose all the pain in my hips. I tire easier and longer distances are much more painful than they once were. Despite clean x-rays there is damage that will never be right again. The last year has made me fearful, and the 26.2 distance is now not just daunting me it is not as pleasant an idea as it once was.

Today however I look at this in front of me and say the marathon is what I want. I have time for that <2:00 half. I feel I am running out of time to run a strong hard fast marathon. Perhaps that fear is a liar and the voice of doubt in my own head. I however won’t know unless I try so I must let go of that fear and push forward. My goal when I started running was not to run half marathons it was to run the Marathon, and as I proceeded to excel at running to run the marathon well. Today I have decided to face my fear, to face this disease, and to be the person I dream to be. I’ve decided the time is not tomorrow because tomorrow is not given the time is now to prep for the marathon. My schedule will have to shift but I am ready to face this fear and I am ready to not just run my first marathon but finish it strong and ready should Boston knock on my door.

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