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