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

Running into 2015

2014 in Review

 

I had a number of goals in 2014 some of which I hit some of which I did not. Overall I am pleased with my 2014 running season, and thankful for every mile since the end of 2013 we were unsure if I’d be able to continue distance running.

1.       Run a <25:00 5k: This did not happen simply because I did not run many 5ks. In fact I only ran one 5k with my daughter, and walked another one in flare. This is something I need to focus on for 2015 because fast short races mean stronger faster longer distances.

2.       Run a <2:00 half marathon. This did not happen but came very close 2:00:56. I am pleased with this had I not started developing sun problems I would have come in <2:00. My next attempt due to the train I got blocked off the course, and my final attempt in November I ended up in 50’s with pouring rain which is difficult on my joints. This goal was not met not due to inability or over striving but due to coarse conditions which is why in 2015 I intend to run more half marathons than ever before allowing me a better chance at finally hitting this goal. Running the <2:00. More half marathons means a greater chance at having the perfect conditions to run well, and thus drive my times in higher mileage courses down overall.

3.       Run my first full marathon. This did not happen in 2014, but early 2015. I got nervous due to a number of flares in the fall and decided to skip out fearing I wasn’t prepared although I was more than ready based on how I ran in January.

4.       Get back into the triathlon circuit. This did not occur I simply was more focused on a lot of other things including running. I also had family issues, a wedding, and developed a 3^rd autoimmune issue.

Overall I am pleased with 2014. I set a 10k PR by 2 whole minutes, and a half marathon PR by 4 minutes! I had great training and ran the most distance races I have ever run. I had far fewer problems than the last 3 years, despite developing a new issue. I learned that the marathon itself wasn’t my issue it’s the standard training, which means my ultimate dream of qualifying for Boston is a possible with proper tweaking of my training so its less intensive on my body. I was given a second chance to keep running and I am thankful for that.

2015 Goals and Priorities

2015 is my year to give back. I have been giving an unbelievable second chance to continue running. Maybe that lasts a life time, but as someone with a battle inside their body I also realise that could be gone tomorrow. This year is my year to celebrate 2^nd chances by giving back. My goals will reflect that and chasing my biggest dream of the Boston Marathon.

1.       <2:00 Half. I will be running a minimum of 5 half marathons this year. My purpose to run a <2:00 half is twofold 1. To solidify and verify a time I have done in training. 2. To pull down my long distance times to prep for the training in 2016 towards a Boston Qualifer.

2.       Run a 5k PR. I haven’t run a 5k PR in 3 years. I need to focus this short distance to push my times down. I am not focused on the <25 like I was before but it would be nice and ideal. I simply want to put a new PR in the bag.

3.       Run a 10k PR. Again more on preparations towards 2016.

4.       Run the best marathon time I can as close to 4 hours as possible. Ultimately running 2 more marathons this year will allow me to fortify this distance on my resume. It will allow me to see what type of time I am running so I know what kind of work is needed to draw those times down significantly to qualify for Boston.

5.       Raise 1000 for the Arthritis National Research Foundation during my fall race season. As stated this is my year to give back I want to give the second chance I have been given to another. Research allows for new developments that can change the lives of those in similar situations as my own.

6.       Raise Awareness for Arthritis by running. Simply put I need to blog more, post more, and spread the word. I ultimately want to be teamed up with a child with arthritis to run for them this year. I have been given a gift and that gift has the possibility to give a better life to countless other people.

I am tremendously thankful for the 2014 I was given. Despite the few bumps I had like the UCTD diagnosis, and having to have my remicade tweaked it was an amazingly beautiful blessed year. I couldn’t have done this without the support of my medical team, my coaches, my friends, my followers, and my precious family. 2015 is here and its time for me to step up to the plate I have been given and use this blessing to chase my dreams and give others a chance at theirs.

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”.