Health Central: Memo to Me Event

Yesterday I had the pleasure of attending the Health Central "Memo to Me Event". This came at a really great time in my advocacy campaign due to some resolutions I've made for the next year to blog more and do more advocacy events.

I've realized my being quiet and shutting down during the difficult portions of this year allowed me to hide, but really should have been a teaching moment for me to give back. I should have allowed my brutal situation to be seen a little more, even the rough emotional moments. Psoriatic Arthritis and Enteropathic Arthritis are not pretty diseases. The things I share are often my undying spirit in the face of this disease, my blind luck to push forward in the face of adversity, and my love of running. To paint a real picture I need to be more open even when the struggle is real. If I only show half the canvas I'm not giving the full picture to the public that is necessary for awareness. The "Memo to Me" event was a great place to hammer this resolution home.

Lori-Ann Holbrook was the speaker at this event, and she was great! She is a well known blogger in the Psoriasis world and volunteers like me as a mentor for the National Psoriasis Foundation. She is also active in the forums on Facebook that I am in as well. Meeting her was amazing she's cheery, bubbly, and a great advocate for those with our disease. She's truly learned to embrace living life to the fullest with a disease, not suffering from a disease.

Lori-Ann's talk to us was about how to find our voices and be a better driver of awareness. Psoriatic Disease sadly is very misunderstood among the public. We have a great chance to change that by telling and sharing our stories. I really needed that and to hear how important my story could be. Awareness brings funds, and funds will help us find a cure.

The second part of the event we were able to talk on video about the things we would go back and tell our newly diagnosed selves. This was really great, I actually spent a few days considering the four questions that we were asked to answer and I felt I gave good honest answers. I hope that my answers are featured. I hope they will help someone else battling this disease be kinder to themselves, and love their self more. I hope that they will see my mission statement "Live a Big Life in the Face of Adversity" and go out to chase their dreams living fully with a disease.

The four questions we answered were really great to think about so I want to share them here for all those fighting battles to consider:

1. What is one piece of advice you'd tell your younger self about living with this condition? 
2. Looking back, is there anything you wish you had known sooner or done differently? 
3. What has been the greatest challenge you've had to face with this condition?
4. How has living with this condition changed you in ways you didn't expect?

I think the best part of this event was how small it was. I know they wanted a better turn out but I really loved the intimacy. It allowed everyone to really open up and talk about their stories. Sharing among fellow spoonies is an amazing experience. To hammer this spoonie love home I was able to drive in with my friend Deeanne who also has PsA, and it was great to have spoonie time with her. Overall I feel like this event was great for my personal morale, my advocacy mission, and my spirit after the last several months I've had. It really helped me see my personal mission better. I am glad I made time to meet Lori-Ann, a lady I hope I'll be able to call a friend for a long time to come.

If you are facing your own battle take the time to check out health central and see if they can help you find your own voice to help others. For more information on their campaigns check out www.healthcentral.com . Everyone of us is a story in the making, and our story has the power to help another through theirs.

Captain Angry Bones

Race Report: Jingle Bell 5k for Arthritis

Yesterday I had the pleasure of running the Jingle Bell 5k for Arthritis in Arlington VA in honor of my father. This was my first race back since my hip went out in February, and I am proud to say I crushed my expectations.

The morning of the race I got up at 5:30 to make the trek up to Arlington. Originally I planned to just get dressed and go, but my arthritic body had other plans. I slept poorly and upon rolling up and out of bed my body heavily protested so stiff I could barely move. I chose to take a 20 minute hot steam shower to combat this and it helped enormously. Luckily my early wake up gave me plenty of time for this.

After this I gathered my things, and headed out the door to drive to Arlington. I arrived around 7:30 for the 9am race. The pick up line was still virtually non existent since they'd been open very short amount of time. The temperature was just over freezing, but 10 degrees warmer than my house had been.  After pick up I chose to go to the open starbucks to stay warm for the next hour.

At the Starbucks I met a family with a child that had JIA. I hate that kids get arthritis too but it was so great seeing a kid of 10 running despite JIA. His family is hoping that he will grow out of his arthritis and I am hoping the same.

At around 8:30 I wandered back outside and started my warm up. I ran loops of the courtyard for about 10 minutes and then proceeded another 5 minutes of stretching. All of which helped a very tight calf that I'd pulled in my sleep the night before. I went to the starting line and lined up after this.

The start of the race is mainly uphill and I had reservations during this time. The air was cold and I was worried not about this race but the coming one in January. I pushed through the first mile then my sternum/ribs had enough I walked 5 feet then started running again. I thought maybe I'm not ready for January. I continued with 2 more 5 foot walks. The finish is down hill and I pushed that last mile. When I turned the corner on the flat inbound to the finish I started my accension into the finish. I smacked the Garmin and stood shocked. I had to check the finish time.

My finish time posted quickly and I stood even more shocked. This race my goals were to 1. Finish Strong under 30 minutes, and my stretch was a 9:15 pace. Both of these I felt were worthy goals because it was my second cold weather run, and I knew I'd been having a lot of myositis problems with my back this week. I also knew I was in my opinion no where near the fitness level I was at when disaster struck last fall. However the clock said something different the clock told me a 9:12 pace with a finish of 28:35, and my legs were like nothing happened. I learned something key I am holding back due to my fears from my issues this last year. I may not be where I was but I am much farther ahead of where I even thought. I have to mentally get past this block. I am hoping this run is just what I needed as a proverbial smack in the face.

Although I finished this run with gas in the tank I do know the breaks in the cold were necessary I've had a number of coughing fits since the finish. I have arthritis in my rib cartilage and in my vocal areas as well. The coughing and vocal cracking is a result of cold air aggravating both of these. This means for the next few days I need to be careful with myself. Thus as much as I hate the indoor track 15 miles on the docket today will be indoors not outside like I'd prefer in temps perfect for my running. I cant be having runs cut short with the marathon so close like I had last week due to sharp weather changes causing my body to lock. So I have to do what I can to get miles in and if that means a monotonous track so be it.

Over all I am very proud of my performance yesterday. It was a huge confidence booster. I have decided there will be another 5k before I go to Disney. My goal will not be a PR but a sub 9 pace. I have also decided I will take the same tactic I used last year in the marathon: run 2.25 miles walk 1 minute while eating. This marathon there are no real time goals only to finish strong a long hard run. Time goals start in May at the Flying Pig. I am still recovering and rebuilding. I need to be careful how I do this since I'm running a damaged hip. Strength has to come before speed to ensure I can run that hip through the coming trials.

Yesterday I also was hoping to meet the Janssen rep at the run, but they never showed. I am as many people know attempting to raise over 5000 for arthritis research in the next year. I am running due to medications from Janssen and my purpose was to have a face to face meeting in hopes they'd be willing to sponsor me. That was not to happen, but something else happened equally awesome.

After my finish I walked past a booth with Health Central and was stopped due to my shirt. I was asked my story, and requested to come out next weekend to film my story for them. They are going to be sharing those videos of people with arthritis to spread awareness. I am very excited to share my story and my mission to raise funds while attempting a Boston Qualifier next year. I am hoping this helps my fundraising push and also helps my mission to inspire people to live big lives in the face of adversity.

The best thing about this little race is the people, and its why I go every year. I love them. I love hearing other people's stories. I met a family helping with volunteering their daughter had 2 forms of arthritis from childhood. I met another running for his father in law. Everyone there is at least for one day on the same mission as me to end arthritis. I was able to see a friend with a similair battle to mine who cant run but she volunteered too and it was great to catch up. In a way this race feels like family to me. It draws so many who support those living with arthritis I just love it and the stories. I cant wait to show up next year and hear new stories, maybe catch up with old ones too.

Captain Angry Bones

The Joy of the Run

After months of continuing two steps forward one step backing with my running, I am excited tonight! Tomorrow I will be running my first race since February! Tomorrow is the annual Jingle Bell Run for Arthritis 5k and I strategically chose about 6 weeks back for this to be my first public run because the cause means so much to me. To make this race even more meaningful my first public run my shoes will fly for my Father who cannot due to arthritis.

Tomorrow when I lace up my shoes I symbolically lace up victory, and I tie down defeat. I accept there is much work to be done, but also celebrate the freedom of being able to do this thing I love once more. I stand tall for those who cant do this or the things they love due to pain and disability. Tomorrow promises to be a great emotional day for me and nothing can defeat the joy that sings in my soul as I prepare for a cold run in the early morning.

Tomorrow's run will be cold and slow. Both things I'm prepared for and accepting. Speed does not return over night, and I cant change the weather. What I can do is celebrate this gift and chance to continue on my mission to use my running to inspire others, to raise awareness, and to raise funds for a better tomorrow.

I reflect on the last several months and the many times I almost threw in the towel completely. I reached a point so dark I couldn't see past the pain. I faced tough decisions and a long seemingly dark road with no end to the night. Yet that point where I had no hope those that did came and lit my way. My husband refused to let me toss every piece of running apparel I owned, every medal and trophy I'd aquired. He refused to let me quit, and when everyone told me no he told me yes you can, and then helped me find a team who would believe too. Then there were my friends who also stood up and said yes you can. I've learned when your light goes out you learn how blessed you are when others lend you theirs and guide you through the night. It is because of those who cared just enough to hand me a candle that I've relit the torch.

So tonight as I reflect on my luck I also reflect on the many who are not so lucky in their battles with arthritis. I face that we never know how much time we have, and another chance is not guaranteed. I know that many suffer in silence and that there is so much work to be done. I wish I'd known and could have helped my father sooner. I wish I could raise money faster. I wish I could come back faster, and just be faster because I mentally feel this allows me a bigger voice in my mission. I wish I could help more people live big lives following their dreams no matter their adversity.

Tis the season to reflect and celebrate, something I will be doing a lot of in the coming weeks. This will be particularly true tomorrow when I lace up my shoes for my father, and test my legs in the cold. I celebrate yet another chance. Sometimes a race is not about time its simply about Celebrating the Joy of the Ability to Run.

Captain Angry Bones

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

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.