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

2014 St. Michaels Half: PR under the Glaring Sun

This Spring season has been all about one thing rebuild and redemption. After losing my entire fall to Arthur’s revenge I had a lot I felt I needed to prove to myself while rebuilding at the same time. Rebuilding is quite a process coming off of injury, but its even more difficult coming back from a chronic disease that leaves permanent damage as a reminder of its wrath. One of my goals for this spring was to set a PR in the half marathon since my PR they year before was not what it could have been considering my fitness levels at the time. I had hoped to set a <2:00 on course for the first time, but that will have to wait for fall. For now I am happy to say that though redemption is not complete St. Michael’s Half is reaffirming that rebuild and redemption is well underway.

St. Michaels Half marathon is held in St. Michaels Maryland on the eastern shore. It is broadcast as one of the flattest courses on the east coast. This race comes at a precarious time of year the middle of may which in the mid-atlantic region can potentially be very hot. The good news is this year it was mild temperatures, the bad news is that they don’t broadcast the amount of sun on the course.

           My husband and I left for St. Michaels on Friday May 16^th the night before the race. We had a nice 2.5 hour drive out to the eastern shore. Upon arriving we picked up my packet, wandered the town, ate dinner, and then I spent some time in the hot tub before bed. My main concerns on Friday were hydration and getting to bed early before the race. Since we would be up early I made sure to lay out everything I’d need before the race and organize everything I’d need for after due to us checking out early Saturday Morning. 

                Saturday morning we woke up early allowing extra time to get to the race start since traffic warnings had been posted. Despite this we arrived at the time the race was just supposed to start because the traffic was worse than anticipated. Due to the many people who were still parking they delayed the race start which on some levels was good because as a skeptical runner who doesn’t like to use the facilities during a race it gave me time to find a restroom. On another level this was bad because it meant 30 minutes later start which in terms of running and mornings in late spring can alter a race for a faster runner significantly by huge temperature or sun increases. The sun increase was the killer for me at St. Michaels.

                The start as stated was half an hour behind. The first half of the race was beautiful, through the town, along the shore through a park, through the golf course, and through neighborhoods. All of the scenery was beautiful and it was shady. I held consistent 8:45 paces which were faster than I intended to go out but I felt fantastic. I could talk to people at this pace it didn’t feel like I was pushing and overall I felt strong like a great push was in me for the 2^nd half.

                Lately I’ve taken a strategy of breaking races into three parts for effort. This strategy worked well for me in my training, and in the airport 10k. For a half marathon I start the first 5 miles at the top level of my comfortable pace just at the point I know if I push harder we’re looking at discomfort. The next 5 miles is just a little harder so just into the uncomfortable zone because now I’m warm. The last 3 miles is set to be deep into the uncomfortable zone close to my projected 5k pace. This pushing effort should make for a negative split and fast building race times. This was the strategy I took to St. Michaels.

                My strategy cracked in St. Michaels not due to heat, lack of nutrition, dehydration, but due to sun. The second half of the race was on open straight a-ways between Easton and St. Michaels. Due to starting half an hour late the sun was high an hour in and continued to get higher through the run. Each mile became harder and harder and my paces slipped. The only saving grace for me was it wasn’t hot and there was a breeze.  I watched many runners crack at the turn arounds coming back and towards the end of the race. One thing Tinkerbell, and Princess both taught me was that despite exhaustion or pain I could push and not crack and so as the miles and sun built onto me I kept pushing.

                As the sun bore down on me my times slipped I became frustrated. I kept pushing with harder effort and they kept slipping. I knew instinctually from the worst burn I’d ever had a week before that this was due to the Remicade and sun not working well together. Yet despite my frustration I knew I had a PR in me and I’d come close to my ultimate goal of a<2:00 if I just kept pushing so I did. I knew if I gave in I’d be unhappy with myself.

              

          As I passed mile 10 I decided I would really attempt to push through the sun and gain faster times closer to what my start was. I was now holding 9:30’s and 9:40’s. I pushed harder and maintained my pace’s in the 9’s despite the push, and the sun just got higher. I was drenched in sweat. At mile 11 I tried again and I had limited success in a short shade patch then slipped again. I mentally told myself you have less than 2 miles you will finish running get to mile 12 and do a final push. I got to 12 and made my move only now I was in 9:50’s my move got me nowhere fast half a mile into this push in the sun I was no faster instead I was ready to puke. The effort in the sun was so hard my body wasn’t having it. To make matters worse my hip started to get wonky on me at a quarter mile into mile 12. I could feel it grinding and get super wobbly. I was no longer comfortable in any sense of the word. Along the way in the last 4 miles while passing people who stopped to walk I encouraged them telling them they were almost there, and in this last mile I saw many cracked runners from the sun. It was my experience of running with Arthritis that allowed me to not be one of them.

At this last half mile my body wanted to walk but my fear inside told me if you start walking in this .6 to the finish you will not finish. My hip was shot I’d thrown it out, but I knew in order to finish I had to continue with a running stride. I just kept telling myself those last 5 minutes keep pushing the time doesn’t matter and I would PR no matter what if I kept running, if I stopped I was done. As I came across the bridge on the path before the last turn into the last .25 I felt my hip shake again and mentally I sucked it up and pushed. I didn’t get any faster in fact I was slowing but I knew I had to keep running. When the shoot appeared people passed me my push kept me even in pace, and as I crossed the line and started to slow into a walk I almost collapsed. During the end of the race I’d counted 4 ambulances leaving the finish. As my hip gave out and I almost fell to the ground 3 people shot out into the shoot asking if I was ok ready to catch me. I said yes and managed to pull myself together walking wobbly out of the shoot. My finish at St. Michaels was a 2:00:56 a PR of 2 minutes!

As stated my goal was a PR first and a <2:00 second. I did not make my ultimate goal but I came very close and I know that means my next race will finally support the <2:00 I’ve been seeing in training. I was proud of this run because I truly gave it my all. I had a lot of difficulties for days after this race my hips and quads were absolutely done. Had the sun not been so high I probably would have finished in the projected 1:52 at the halfway point of the race, but to me that doesn’t matter. What mattered from this race was the continued lesson I can push through pain, through exhaustion, and I can finish well. I can finish strong. Strength is not always a power surge at the end or gut speed like at the Airport 10k, sometimes the greatest strength is knowing your body gave you its all and allowing it to finish with grace. I feel that this race was run with grace my body gave a lot through the sun and I am proud of every step and every mile despite a huge positive split in times. I know I earned the PR I gained those 2 minutes were won through a hard mental and physical fight in the last portions of the race. Next time <2:00 but for now I am proud to continue to see slow strides in not just running, but my endurance with my personal struggles. I am thankful for every mile my body gave me and learning to trust myself rather than give in.

 Captain Angry Bones

2014 Airport 10k: The little 10k That could

On Sunday April 27th I ran my second Manassas Airport 10k. It seems fitting that this was the last race I made a personal record in before my fall from grace due to Arthur’s revenge and my first coming back with a PR. Sunday’s PR was unexpected for a number of reasons.

The first and prime reason the time I ran was unexpected, was I did not feel I was in shape to beat the time I had the spring prior. Spring 2013 other than a nasty sinus infection/chest infection thanks to steroids and chemo I was in the best running shape of my life. The 2013 race I did bonk out the last 2 miles but I had held tremendously fast times the first half. Those run times were ones I had not really pushed for this spring. I knew after several rocky months I had to rebuild slowly and I accepted that I was working with a damaged hip and now a new drug protocol. Apparently I underestimated myself in this regard my body despite the damage is ready to run it is ready to race and it is ready to be pushed to the limit.

The second reason I did not expect a PR was due to a family situation that had taken a lot of my time and stressed me to the point of flare. Three days prior to the 10k I went into the doctor to confirm a costochondritis flare (inflammation in the ribcage), and I was put on a pack of Medrol steroid. Since I am newly on Remicaide I now have to watch how I react after my next infusion to make sure this was driven by the stressful situation if it wasn’t they’ll up my dosage to every 6 weeks rather than 8. Costochondritis is not a fun thing to run with it causes stabbing pains in the ribs that are similar to what you would get from a heart attack. I happened to get it quickly and bad enough that I had inflammation on the sides as well pushing on my diaphragm and kidneys. This makes for a lot of cramping just breathing let alone running. To top off the costochondritis situation due to the family situation I also missed a good deal of training due to flare and helping my family out. So this adds up to losing training, plus running through pain and that is not conducive to a PR.

Why would I run a race knowing I have no chance at a PR? The reason is because in order to prepare for a PR the next month in the half marathon distance (over twice the distance of a 10k) I needed to know what I was dealing with. I needed the information from this run to fine tune for the run in 3 weeks making the most of the final two long runs, and three speed works going into the half marathon. I also knew that if I want to run PRs and I want to run strong I have to run despite pain I have to push through. By Sunday I would have three days of steroid in my system hopefully enough to let me run a decent pace to get a rough estimate of where I was physically. Finally I must run through bad conditions in order to run through snafus at a race. You never know when your diaphragm may freeze up unexpectedly, you will cramp, your nutrition plan could act up, etc. The best way to face these uncertainties is to train dealing with them head on which is exactly what I did at the Airport 10k.

The Airport 10k is exactly what it sounds like 6.2 miles of running through an airport primarily on its runways. This means the course is flat. Flat means PR potential. Airport also means another thing no protection from the elements, you are exposed to everything sun, wind, rain etc. It’s the best and worst of both worlds but often leans towards the best for running. April is an interesting time in Northern, VA for runners. It can either be very warm, or very cold. It can be dry, snowy, sleet, rain, or high winds. It’s a good season for runners though because typically the temps are not too cold but not too warm. Runners will run through anything but typically have preferences of temperatures, weather conditions, etc. April provides a relatively good and stable time frame in this area for a good chance at PR weather.

Going into the Airport 10k I knew the temps would be cool, around 45 degrees, I also had done a progressive easy run Friday with costo that told me if careful and warmed up I could push the pace. I went in feeling rested, injury free, and with enough information to finish with a good pace. I knew my greatest issue would be at 45 degrees keeping my chest warm. Cold air plus inflamed ribs equals cramping and diaphragm ceasing which means a lot of pain and difficulty running. Having faced this before I knew it was better for me to be on the warmer side keeping my ribs warm than cold. I also knew it was important for me to warm up and stretch so I wouldn’t be stiff at the start of my run which could also contribute to cramping of not just the diaphragm but my muscles as well. Steroids make me much more likely to get charley horses and other cramps so I knew it wasn’t just my diaphragm at 3 days in I had to be leery of I had to baby the rest of me as well.

The morning of the race arrived with an early wake up on my alarm, followed by a huge gust of wind. My first thoughts were great this is going to be interesting. I grabbed a running jacket to put with my clothes and ate my breakfast of running choice. Then I prerace showered to let the heat and steam open my lungs, and slathered volteran gel on my knees and hips. After this I grabbed my race gear and headed out. Upon arrival I picked up my bib, and took a photo with the “Mom’s Run this Town” chapter from my area. Then I warmed up, stretched and headed to the start line. The start line was cold I tried to keep moving to not get too cold.

As the race started I wanted to warm up quick I bolted out. My first mile was a <8 something I’d never seen in a race before. The second mile came around the next runway however and this is where the head wind started. The winds were high and my eyes watered despite my sunglasses so tears streaked my cheeks in addition to this my diaphragm cramped due to the cold air in my lungs. I did not let this deter me I pushed and wouldn’t stop running, one thing training through very active disease taught me was yes I can push through pain and I took that lesson to heart here. I looked down 9 and low change as I came across mile 2. I felt good as the cramp subsided and did not let this drop in time deter me. I knew I’d pushed hard the first mile, and faced heavy wind plus cramps that I’d worked through I could continue with a hard effort and make up for it. This is where I started to think I can come close to my PR from last year just keep pushing. I decided to hold a 8:45 pace the next two miles and ate at around 2.5 half a pack of caffeinated sports beans. At just before mile 3 the course for the 10k goes left, and the 5k goes right to the finish. Apparently the winds were so high that morning many cut their course finishing a 5k rather than the 10k. I took my turn into the airport side roads and started my push. Mile 4 was a downhill in head wind I cramped again but just told myself the turnaround uphill out of the wind is just ahead push for speed. I turned and at 4.5 I ran up the only slow uphill that lasted about .75 miles. I decided at mile 5 I felt good I’d push a <8:30 the last 2 miles and go for the PR because my times were signaling it was possible. Mile 5 I pushed just enough to bring in a good time bellow 8:30 but left enough gas to rev my time for the last 1.2 miles. The last 1.2 I did a progressive push the first half I pushed harder than the mile before, the second half I pushed even harder, and as the Garmin beeped for six I started the push towards the sprint, at .1 out I pushed as hard as I could to the finish. I smacked the Garmin crossing the line to see 52:18 and my jaw dropped then the tears fell.

Going into this race I did not expect to approach the 53:56 I had run the year before. The 52:18 meant I smashed my race in a way I never thought possible. After a year of struggle against my own disease I knew there was a possibility I just ran my first <8:30 10k. The official results came that night a 51:59, a 1:55 PR. In terms of distance a 10k is won by seconds or fractions of a second many times. PRs usually come also by seconds or half a minute not almost 2 whole minutes. My PR meant I’d dropped 11 seconds per mile from my last running of this course. It meant I was in close to the same fitness level I had been the year before. It was a victory not just for running but over arthritis. It was unexpected, and satisfying but extremely emotional. Sometimes the greatest victories are those we do not expect, the ones that sneak up on us and tell us you are worthy and you have won. I may not be 100% back to where I was last spring but I know I am almost there and my climb to even better times dependent on that I stay healthy is possible.

I am thankful that I did this race, and proud that I pushed. I earned this PR. Going into this run my only goal was to show Arthur who was boss. To come as close to last year as possible to prove I could still run good times and work from that. Instead I trampled Arthur into the ground and said this is my body, this is my run, and I can beat the clock. Triumph is the best breakfast a soul can have and I am happy to have had that feast after a famine I worried at one point would not end. There is work to be done but I am ready to do it. I am ready to be the best I can be and not afraid of this disease’s affects from last year anymore.


Captain Angry Bones