Endurance Adventures Beating Rheumatoid Arthritis

Tuesday, June 13, 2017

The less talked about side of "Why I run"

It has taken me almost 2 months to sit down and write my race report for Mt Charleston marathon and this is not that post. I will get to it. But I wanted to write about something else first. I have a lot of different thoughts and emotions going through my head. How do I sum up what it means to me to accomplish a goal...something that is better labeled as a dream and a far fetched one at that...eight years in the making. Eight years ago I started running with a bucket list goal of running a marathon. I also had this crazy idea in my head that I could speed up the damage in my feet caused by rheumatoid arthritis (RA) and convince a doctor to cut my feet off. It was irrational but chronic pain has a way of getting to you so that you aren't necessarily "rational". I honestly had no respect or understanding of endurance running. Over the years my knowledge has grown. I have made a lot of mistakes. I have also gotten smarter and stronger. I share a lot of my experiences publicly and most know my story, if not scroll backwards there are links on this blog to several other articles and race reports back to my 1st sprint triathlon and 1st marathon. My dream of Boston was so much bigger than just overcoming the physical challenges of chronic pain and degeneration. Having something to reach for that was bigger than I could possibly hope to attain kept me going through difficult challenges. Running and reaching for Boston has made me a stronger person. It has made me a better mother, a better wife, a better me. It has given me several opportunities to reach out and share hope and make a difference in other peoples life, often complete strangers. I am humbled and grateful for that opportunity.

When I was training for my 1st marathon my children were young. I ran a lot on the treadmill in the basement so I could have my babies close by. One of my children was facing series health challenges and everything pointed to a brain tumor. It was scary and I was terrified of the uncertainty of what their future held. Running was my therapy. I would run and I could let go of all my fears, sadness and helplessness. I don't cry often but I would get on the treadmill and the sobs would just make their way to the surface. Running gave me a way to let go of all the things I could not control. Over the years we have faced many challenges and running has continued to sustain me through difficult times. 2016 was a particularly difficult year for us. My child's brain tumor was back. This child was also dealing with some autoimmune and a few other serious health challenges of their own. Once again we were faced with uncertainty and fear not knowing how to help this child with their pain and the challenges they were facing. In January one of my other young teenagers decided that they did not want to live any more. They had a plan to end their life and the means to do it. Luckily they had great friends, who showed up at our house in the middle of the night knocking on the door to stop my child when they received a "goodbye text." It was unexpected. How does a parent prepare for that?! My child had been laughing, joking and having fun with our family just a few hours before. Our world was upside down and we didn't know how to fix it. Life was dark and dismal. I felt myself slipping into a dark hole. I didn't want to talk to anyone and I spent a lot of time crying. Running was a way I could let go and release the build up of feelings and emotions that I couldn't put into words. I was getting stronger, real life provided me with plenty of fuel to push my body physically. My paces were on, my disease was under control and I could see reaching my goal of running a Boston qualifying marathon. Then in February I was hit by a car in a crosswalk. I somersaulted over the hood of an suv and landed "wrong" on my leg when I came down. I sprained my wrist & smashed my fingers. The driver fled before checking to see if I was alright. I was alone and cold and really angry so I ran 4 miles on my leg when I shouldn't have. Probably in a little bit of shock. I ended up with a stress fracture in my fibula. I kept training but wore a boot for a month. I did Ironman Oceanside 70.3 in April just before it was healed and made it worse and went back to wearing a boot and using crutches. The boot came off just in time for Ironman St George 70.3. I did the bike and swim but opted out of the run so that I wouldn't need to put the boot back on. I also wanted to heal so that I could heal and work towards Boston. It was my 1st DNF, completely intentional from the start and much harder to do than run injured. But it was a good lesson and one I needed to learn. Knowing when to quit is just as important as knowing when you can push on through the pain. Coming back was slow. I kept getting tendinitis around the fracture and my RA nodules on my Achilles were flaring along with several neuromas in my feet. But I had a plan to help my child who was struggling emotionally. I knew how much running helped me so I got them to run with me. We were healing together and it was a gift to both of us. My child joined the high school cross country team and we ran together all summer. It was wonderful. I got to share my love of running with my child and I could see it helping them as well. We had weekly runs in the mountains and I was hopeful that we had made a turn for the better. Life was looking up and I was less afraid for the emotional health of my baby. But then my child was injured. The high school coach encourages high miles and two a day work outs. My kiddo ended up with painful shin splints and wasn't able to run. They missed several meets and the darkness started creeping back in. In September we went on a family four wheeling adventure. It was one of the best days in my memory with my family. Half way through the adventure I managed to roll the four wheeler I was driving with my daughter on the back. I tried to put my body between her and the machine as we flipped and the machine came flying on top of us. Luckily she wasn't seriously injured. It knocked the wind out me and my head bounced on the hard ground. I was gasping for air and knew that I was hurt, but once again shock has an amazing ability to dull the pain. We rode for awhile longer. I would gasp and yelp when we hit bumps on the dirt road. But I wasn't going to let it stop me from enjoying the trip with my family. I was having a hard time breathing. We stopped for dinner and while my kids played in the river I attempted to "walk off" the pain. Watching them laugh and joke and just have fun together on that day is a memory I will always cherish. Once the shock wore off I knew I was seriously injured. It was getting late and I didn't want to go the hospital so I went to the insta-care the next day to assess how bad the damage was. I had broken three ribs. For the next week I didn't do much. I would walk a mile or ride my bike in the basement just long enough to continue my exercise streak. (Haven't missed a day since Dec. 10 2012) The rest of the time I just sat fighting for air and praying that the RA didn't attack my lungs or the soft tissue around my ribs and that I would heal. The next week things got a lot worse. My child who had been struggling came to me and my husband sobbing and begging for help. This child had turned to self harm to combat the emotional pain that they were battling and fighting the desire to end their life. Our child told us that they were happy one minute and the next could think of nothing but ending their life. They wanted to get better and asked us to help. We had been doing weekly counseling sessions and between that and running things had been going better. We were hopeful that things would continue to improve. A few months earlier I had talked to a friend about the challenges we were facing and that my child's counselor suggested we consider in patient treatment... basically therapeutic boarding school. My friend gave me great advice. She said you might not be at a point where you can see that as an option, hopefully you never will and things will continue to improve. But just in case, do your research now. Research your options now while you are not in crisis so that if you are faced with that decision you know what you want to do and you don't have to make that decision when life is caving in around you. So we did just that. My husband and I started looking at different schools comparing both the therapeutic and educational programs. I interviewed directors over the phone and we narrowed down our list of facilities that we felt could help our child if it came to the point we needed more help. In June we went as a couple to meet with the director of the school where we ended up enrolling our child. It was months before we would reach the point where our child came to us and asked for help. Our child had no idea we were researching or looking at options to help them. My husband told the director down to a small window when he felt like we would "know". By this time (end of September-beginning of October) he said either things would significantly improve or something would happen and we would know that it was time to get more help. Our child came to us begging that we help in the middle of that window. It was September 29th. Deciding to allow some one else to help our child was the hardest decision we have had to make. We discussed it with the child and they agreed that they wanted the help. My husband was still calling resources and looking for another option as we prepared to take our child to the school. I reminded him of his statement back in June and told him he couldn't have known that closely to when the time would be right. I say there was some divine prompting for a father so that we would have the strength to do what we needed to do. Knowing that your child is hurting, whether it be physical, emotional, psychological or spiritual is a difficult part of parenting. We want to help them. It is our jobs as parents to help our kids. But we can not take their personal challenges away from them either. It was beyond hard! We didn't see or talk to our child for weeks. After that it was very limited. They were learning but also slow to progress in the program. The program works at the speed of the child and is very individualized to meet their needs and help them overcome the challenges they face. We thought that we were looking at a 3 month program, worst case 6 months. Nope...it has been nearly 10 months and we aren't finished yet. Once again I felt helpless and out of control. Control really is an illusion. Don't believe me... look around at your own life. The only thing that is certain is that nothing is for certain. We fight so hard to maintain some semblance of control. But when you really look around we really aren't controlling a whole lot. As my ribs started to heal I started running again to "challenge" them and hopefully regain normal function. It was hard. I had broken two of them right where they support the diaphragm and it made breathing very difficult. The third was in my back. My RA has attacked my lungs in the past and I was so afraid of that happening again. I fought to take a deep breath and start to heal my lower lobes of my lungs. I also needed the emotional relief that running provides me. I signed up for a 12 week high intensity cardio weight program, Body By Banks with Michael Banks, not knowing if my ribs could handle it but I had a good friend who supported me ask me to do it with her and I needed an excuse to keep fighting. I set a goal to run Mt Charelston but I really wasn't sure I could recover and train enough in time to run it. I was burned out and not sure I wanted to hang on to my goal. Maybe I should put it away for a few years. But I thought about my children and their challenges. They knew what my dream meant to me and I wanted to show them that I wasn't going to quit just because it was hard. My training was focused. I only ran 3 times a week. One speed, one tempo and one long run that always included a good deal of climb each week along with the 5 am cardio class three times a week. I had 7 tumors in my feet leading into my marathon... they hurt and my toes are bone on bone because of the RA. I often stop to "relocate" and adjust my toes on a run. I questioned my sanity in thinking I could reach my goal. But I still had this overwhelming desire to accomplish it. I wanted my kids to believe that they could accomplish the seemingly impossible. I wanted them to know that I don't give up on myself or them and that I know they can overcome the challenges they face and reach their own goals and dreams. I showed up at the start line (I will share a race day post later) and finally reached my goal, my dream of Boston. I think that brought a new kind of shock. But I did it. So why do I share all of this very personal information? Because I want to be real and because we can't help and support each other if we aren't. There have been a handful of people who have opened up to me and my husband along this journey. They have shared very real and very private experiences and we have benefited because of it. These friends have given us the strength to hang on. There is a strong stigma surrounding mental health in our society and it is difficult to talk openly about, but it is just as real as physical health challenges. Once again I want to share hope and strengthen my own. I have been saying for months that I am holding on to hope. But talking to another parent the other day they had a better description. "We have blind faith" and are willing to follow it to help our family in any way that we can. Life is hard, sharing this post and being vulnerable is hard. But in being real we can help each other through difficult circumstances. My goal of Boston gave me an outlet to work out real life drama... everyone has real life drama we can't escape it. I have very easily shared how that dream changed my physical health for the better. I just wanted to touch on the other side just a little bit of how it has helped me in other ways. I have been vague to protect the privacy of my children. But I am open and willing to talk. If I can support you or you have insight to share with me please private message me.

Friday, October 21, 2016

Triathlete Magazine Athlete Highlight

With Ironman's change to the snorkel rule (they are no longer allowing the use of a snorkel under any circumstance, up until now it has been allowed as a medical device to help an athlete with neck or breathing issues to swim. It disqualify the user from any podium finish and for qualifying for any championship race so the only advantage was medical necessity.) I tried to raise awareness and hoped to have them reconsider. It was my thought that maybe the did not fully understand what they were doing. Ironman has an amazing and inspiring theme of "Anything is Possible" they celebrate challenged athletes and make accommodations for other handicaps; rope to tie a blind athlete to a guide, a tricycle for a balance impaired athlete, etc. But apparently an athlete that medically needs a snorkel does not physically show enough signs of a physical handicap to warrant the same respect and consideration. I was deeply saddened by their response to not reconsider the rule change. I have loved being apart of Ironman. The energy and inspiration is amazing. As I was trying to gain support and help on the issue someone told Triathlete magazine about me and they contacted me to do an article. Attached is a link to the piece. http://triathlon.competitor.com/2016/07/features/faces-pack-managing_134604 UPDATE: In the spring of 2017 I had the pleasure of meeting Bob Babbitt, a legend in Ironman Triathlon, founder of Competitor Magazine which later became Triathlete magazine and also the founder of the Challenged Athlete Foundation. A mutual friend told him my story and he quickly started contacting top triathlon officials. He gave me phone numbers and email addresses for the correct people to talk to and together we were able to get the snorkel allowed again for athletes who physically need one to compete. It is now in Ironman's official rule book in the challenged athlete open division to allow for the use of a snorkel with medical necessity with medical documentation from a doctor. Thank you Bob

me and Bob Babbitt

Thursday, May 12, 2016

St George Ironman 70.3 err 57.2 May 7, 2016

I raced Oceanside 70.3 four weeks before St George 70.3 on a stress fracture in my fibula from an accident this spring where I was hit by a suburban in a cross walk while running. The accident has increased my disease activity, causing a lot of pain, inflammation and fatigue. I have been fighting hard to get it back under control but the injuries and not being able to run have made that difficult. Rheumatoid arthritis (RA) is often compared to a combination of flu like symptoms; body aches, low grade fever, nausea, exhaustion and a feeling of being hit by truck along with painful swollen joints. I completed Oceanside but stressed the stress fracture. The bone still hurts to touch and the tendons around the fracture are inflamed as well. I was running a fever and coughing all day at Oceanside but I blamed it on the RA and wasn't going to let that stop me. But the days following the race a flu virus knocked me down flat as pay back. So the time between Oceanside and St George wasn't filled with a whole lot of quality workouts to prepare me for race day. Coming into race week I was physically and emotionally exhausted. The weather was stormy with a low barometric pressure front which makes me flare worse (more disease activity). I spent a majority of my days that week in bed with a heating pad wrapped around whichever part of me hurt the worst at the moment. I was not excited to do anything let alone race. But I managed to pack a bag and get in the truck when it was time to go. We left early Friday morning surrounded by thunderstorms, rain and wind. It made me nauseous and achy. I knew that my leg wasn't healed enough to run. My doctor had given me clearance to swim and bike but had recommended that I not run until the bone healed. I had paid for the insurance at the race and contemplated not starting, I did have a legitimate medical reason not to race. I had right up until the start of the race to decide, as long as I didn't cross the start line I could still get a refund. I told Josh that if it was stormy I wasn't going to race. Two of my last three races were under cold, miserable hypothermic conditions and I didn't need to prove anything, especially on a stress fracture (I have done that multiple times as well). I also knew that if I started I would want to finish and it would be hard to pull myself out of the race and not run. I know this sounds depressing. But everything quickly changed when we arrived in St George. We made it to athlete village and for a short time the sun was shining. It felt amazing! At both athlete check in and then at Sand Hollow for a pre-race swim with Salt Lake Tri Club I was surrounded by amazing friends and athletes whose excitement was contagious. It reminded me of why I was there. The fog I had been under all week was lifting, and I started to feel better. My body was still flaring but I had a better mental outlook to deal with it. We went to an early dinner with friends and then headed back to our condo to get ready for race day. Josh and I planned to go to bed early to be ready for an early morning wake up especially after getting up at 4 am that day. But my teenage daughter was at a dance competition and did not get home until 12:45. Even though we were away I couldn't go to sleep until I knew she had made it safely home. So not a lot of sleep pre-race. But really, who sleeps the night before a race anyway? Race morning went really smooth. I was still fighting the nausea that comes with a flare and had a hard time eating my bagel but I got it down and it stayed down. I also had a diet coke and a Core Power protein drink. My hands were still swollen and flaring but the majority of the flare was now under control. Josh drove us to the bus pick up and we weren't even on the very last bus headed to the lake. Once at the lake everything moved really fast. No sooner was I ready and it was time for me to wade into the water and wait for the signal for my wave to start. The swim went really well for me. The wind was already picking up but the waves weren't too bad and I wasn't cold. The exhaust from nearby boats was the biggest nastiness. As we swam the kayak crew was working to keep the swim lane narrow. I understand they did this for safety. I have watched from the shore how quickly it can get dangerous out on the lake if the wind picks up. But it felt like I was fighting to swim around kayaks the entire swim. I smacked one of them with my swollen hand and oh man did it hurt. Overall I enjoyed the swim. I passed swimmers and swimmers passed me. I was kicked and smacked but nothing too serious. Before I knew it I was climbing the boat ramp and hobbling across the parking lot to my bike. Time 50:01

(photo credit ~ Vicki Mathis) I wore a thin pair of socks to protect my feet from other swimmers. At IM AZ my feet were clawed repeatedly by other athletes and even little scratches will make my immune system over react and attack the area. My feet are affected enough already so I wore the socks to protect my skin. When I got to my bike Josh was standing there. I expected him to finish his swim close to mine but I didn't understand why he was standing around waiting for me. He told me he had gotten dizzy on the swim and was blacking out and had DNF'd. I thought he was joking for a minute and had really just passed me on the swim but he was serious. He joked about going out to breakfast instead of biking but before I could think too much about it he turned and took off with his bike sans timing chip. I continued getting ready. My transitions are slow and in the cold they are excruciatingly slow. I was having a hard time getting my fingers to work to put my shoes and socks on and clip my helmet. But eventually I was all put together and ready to bike. It was sprinkling in transition and the sky looked ominous but I had already started so I didn't give the rain too much thought. I love the St George bike course. It is a challenging ride with over 3,000 feet of climb over the 56 miles all the while surrounded with breathtaking and inspiring views. Saturday the ride was made more challenging by adding cold, rain and wind. For a well written report on race conditions read: http://303triathlon.com/Ironman-Utah-703-St-George-Aftermath-Freeze-or-Fry As I left Sand Hollow the rain and wind picked up. I told myself it would pass and to keep going. It didn't. It rained and the wind blew for nearly all of the ride. I wished I had opted for full gloves and my cycling jacket but I had optimistically planned for a warmer ride. I did at least have a long sleeve cotton shirt on. It was wet and soaked through in the first half hour but it at least kept some of my body heat in. In an attempt to stay warm I stayed aero all day except when I needed access to my brakes. Like everyone else out there I was frozen. I kept asking myself why I was doing this... I already said that I wasn't going to ride if it was raining. But here I was pedaling my way through the course. I had started the bike and I would finish the bike. I no longer cared about the wind, rain or the cold. I just wanted to ride my bike. Dr Tom Fletcher had kindly taped my stress fractured leg the night before the race to add a little more support to my body. It really came in handy on race day. The tape helped protect my leg and kept my leg functioning in the cold and wind. (Arizona 140.6 was similar weather and the cold wet weather made my knee flare and I had to petal one legged for a good long while)
(Photo credit ~ Tom Fletcher) Amazingly even in the cold I pr'd some of the race segments from previous times I had ridden the course. But overall with the cold and wind it was a slow ride Heading up Snow Canyon into the wind and rain was tough. At one point I stopped to make sure my brakes were not stuck. It felt like I was dragging my bike up the mountain. My hands and feet were completely numb. I was extremely grateful for my husband. For my birthday he had upgraded my bike. I now have Di2 (electronic shifting) that shifts my bike at the touch of a button. On a good day my hands have a hard time gripping and doing basic things.
With the conditions on race day I wouldn't have been able to shift. I got all emotional and teary on my ride realizing that his foresight, kindness and love for me was making it possible for me to continue. Just one of a million reasons why I love and appreciate this man. But even in the misery Snow Canyon was still beautiful and awe inspiring. I could easily loose myself in the scenery and it made the climb more bearable. As we reached the top volunteers were coaching us to shake out our hands to get the blood flowing so that we could use our brakes on the fast descent to come. I had ridden Snow Canyon two weeks before with crazy cross winds and was nervous to ride down the canyon again. But I was also freezing and just wanted to be done. The road was wet but the winds weren't bad so I rode as fast as I dared to safely reach transition. As I came to Diagonal Street I started to cry. After riding the bike portion I knew I needed to turn in my timing chip and not run. I had been arguing with myself over this for the entire bike ride. It wasn't because the bike ride was cold and miserable and I was tired and didn't want to go on. I did want to run and I knew that I could finish the race. It was because I rode the bike portion despite the conditions that I had said I wouldn't ride in again after racing in similar conditions before. I knew that if I started the run I would finish the run. It wouldn't matter if it hurt or if I was making my stress fracture worse and risking a full break. If I started I would finish. So instead I came into transition crying and removed my gear and timing chip. I put my run shoes on and before I could talk myself out of it I dropped my timing chip in a pile of others so I could no longer tell which was mine and change my mind and run anyway. I sat in a porta potty and cried. Time 3:58 I wanted to finish what I started so badly. Quitting was so much harder, especially knowing that if I am unable to get Ironman to change their snorkel rule and again allow for their use with a medical exemption this would be my last Ironman brand race. I was so sad but I have raced on a handful of stress fractures and I know what it costs. I have already given up months of running because of this accident. Running is the single best thing that helps me control my RA. I can't afford another two months off of running to recover. I also needed to remember why I started doing triathlons... I kept stress fracturing my femurs trying to reach my goal of qualifying for the Boston Marathon. The whole point was to force me to cross train so I would be stronger and be able to attain that goal. That is still my goal. Running St George would have taken me further from that goal. Whether Ironman decides to change the rule or not (I hope they do) I am grateful. I am grateful for what I have learned and how far I have come. I love Ironman's marketing slogan that "Anything is Possible." I am disappointed in them right now for taking away the opportunity for others like me who require a snorkel to swim the opportunity to embrace the dream they are selling. I am glad I went to St George and participated in the swim and bike. I am even happy that I gave up the run. The race felt like a complete system re-set for me. My body feels better this week. I am moving better and managing my disease much better. I needed a physically challenging day to re-boot. Now it is time to finish healing my bone, set new goals and conquer more obstacles. I have a dream to run down and I hope this fall I will reach my goal. This was extremely long winded. If you read it all, thank you. Now I am putting my headphones in and going to go listen to "Fight Song" by Rachel Platten and get my work out done for the day. https://www.youtube.com/watch?v=xo1VInw-SKc

Monday, April 11, 2016

Oceanside 70.3 April 2, 2016

Oceanside 70.3 recap.

I hate to admit it, but getting hit by a truck while running hurt me a lot more than I like to acknowledge. In addition to several sprains, a stress fracture and tendinitis it made my RA & fibro flare with a vengeance. I still haven't missed a day training in 3 + years but the quality of my training suffered for this race. Plus with the stress fracture I haven't been able to run for over 6 weeks and was in a boot last week. So coming into the race my goal was to be able to finish the run without too much pain and not dnf. My swim went well. The water temperature was nice. It felt very congested as we got to the turn around and I spent a lot of time trying to get around other swimmers. The waves made me a little sea sick but it was manageable. (49:52) Transition was super slow. I didn't want to run barefoot and risk messing up my leg before I even started so I walked.T1 7:49 The bike was by far my favorite part of this race. My grandfather has told me stories my entire life about his military days & time he spent stationed at Camp Pendleton. Being on base gave me a visual to go along with the stories. I had no idea how beautiful and how big it is. It is like a giant nature preserve. It was a challenging ride with nearly 3000 ft of climb and a few really steep hills & plenty of wind. But after taking it easy for the past 6 weeks it felt amazing to push my body. I love a challenge and it helped me feel like "me" again. (3:36) Again not a fast transition. I made sure my socks were on straight and headed off to see if I would be able to run. T2 10:37 I started the run cautiously. The stress fracture is in my right fibula and isn't completely healed yet. I saw my orthopedic surgeon last week and he X-rayed it. He put me in a boot to help speed the healing and gave me his "ok" to race. He said the bone had healed enough that it wouldn't snap, but that it would hurt so I could try to do the race if I wanted to. I had tried to run on Tuesday before the race but couldn't make it a quarter mile without sharp pain and limping so I was very nervous about the run. I decided before hand that I was not going to limp 13 miles just to say I finished and was prepared to dnf if I couldn't manage it. But it held up, I couldn't toe off very hard without the pain getting sharp so I slowed my pace to where I could manage it and just putted along. It was awesome to see so many friends on the run. SLTC & BAM kits were everywhere and everyone was cheering each other on. I love the sense of family & the support we have for each other in our local community. It makes this sport fun. (2:28) I came across the finish line and I was very emotional. My leg was hurting & I was incredibly grateful that it had held up so that I could finish the race. I was happy to have completed my day and even happier that it wasn't a full distance race today. I was happy and sad. I love Ironman. I love to race. I love the difference it has made in my health. I am currently waiting to hear back from IM on a recent rule change that no longer allows snorkels for any reason. It is medically necessary for me to wear mine to swim. I hope that they will amend their rule and if not I am prepared to fight them on it but I hate that I might have to. I want to participate & I want others who have the same physical challenges to be able to compete as well. The Ironman dream changes lives. It makes us better, stronger people when we can believe that "Anything is Possible." Overall time for the day 7:13:17

IRONMAN New snorkel rule no longer allowing medical exception ..picking and choosing which disabilities it will accomadate. A letter to the United States Justice Department

As of March 1, 2016 IRONMAN (IM), under the World Triathlon Corporation (WTC), a subsidiary of the Chinese Wanda Group changed their policy regarding the use of a snorkel during the swim portion of the race. The rule change prohibits the use of a snorkel under any circumstance. In excess of ten years prior to March 1, 2016 the use of a snorkel was allowed with a medical exemption to allow an athlete with a physical disability to participate with the understanding that the individual using the snorkel would be exempt from any podium placement or from qualifying for a World Championship race slot. The disqualification from any possible accolade eliminated any possible advantage that the snorkel might possibly provide. Therefore, the only advantage to using a snorkel would be the medical necessity of its use to participate. This rule change is in direct violation of American’s with Disabilities Act of 1990 which states that reasonable accommodations, which is a change in the way things are typically done that the person needs because of a disability. For over a decade prior to March 1, 2016 IM and WTC were compliant with this act and made accommodations for athletes who had medically documented needs to use a snorkel to overcome disabilities to be allowed to participate. Now the organization is no longer compliant. I thought that perhaps IM did not realize the legality issue of the recent rule change and emailed them directly to address the issue. I emailed athlete services and was told that my email had been forwarded to the Global Operations Director and that she would be in contact with me soon. It has been more than three weeks and she has yet to respond. Athlete services has granted me the permission to participate with the snorkel with my medical documentation of disability in the events that I had signed up for under the previous policy but not moving forward. Moving forward I was told there will be no exception or allowance of the use of a snorkel. I also communicated directly with Jimmy Riccitello, IM’s head referee. I explained to him at length how the rule change discriminates against me and other athletes with physical disabilities. He stated that there are no plans to change the rule to allow snorkels. IRONMAN is the number one user-based sport brand in the world. IM’s marketing plan is based on the theme that “Anything Is Possible.” They market physically challenged athletes and celebrates the overcoming of challenges. They spotlight “everyday heroes” in the World Championship race in Kona, Hawaii. The organization works closely with the Challenged Athlete Foundation and accommodates physically challenged athletes to allow them to participate in their events. A few examples of accommodations include: - the use of a rope during the swim to tether a blind athlete to a guide - modified bicycles, tricycles to accommodate physical challenges - prosthetics - etc The rule change to no longer allow the use of a snorkel for an athlete with a medical necessity is blatant discrimination. Picking and choosing which disabilities IM is going to accommodate with reasonable accommodations is unacceptable. Especially given the fact that IM markets and celebrates disabilities that are easily seen and discriminates against an “invisible” disability. The following are examples of disabilities that make a snorkel medically necessary. This list is not all inclusive, just a very small sampling of reasons. Joe has had a double lung transplant. Inhaling water is a major concern for his lung health. However, the use of a snorkel minimizes this risk and has been approved by his doctor to effectively allow him to continue to participate in a sport that improves his quality of life. Mark had neck surgery and under the advisement of his neurosurgeon is not to swim without a snorkel to prevent reinjury. He has participated successfully with the use of a snorkel for the past six years. Emily has trigeminal neuralgia, an extremely painful facial pain condition. The pain is triggered by changes in pressure and touch. The constant motion of swimming without a snorkel is excruciating. The use of a snorkel allows her to keep her head in the water eliminating the trigger for her disabling condition. And I have rheumatoid arthritis and cervical degenerative disc disease with left sided radiculitis exacerbated by repeated cervical spine rotations as needed to breathe in freestyle swimming. Along with severe headaches caused by repeated cervical spine rotations. It is disabling to the point of loosing arm function. It physically disables me for days. However, the use of a snorkel eliminates the problem and I am able to swim safely. These athletes and many like them are not asking for anything extraordinary. Only that Ironman follow their own previously stated rule and allow for reasonable accommodations for an athlete with a physical disability in which a snorkel would allow them to participate. It is my hope that you to will see that the new rule change regarding the use of a snorkel by Ironman under the World Triathlon Corporation is a violation of the Americans with Disabilities Act and help persuade them to reconsider and reinstate the medical exemption. Thank you for your consideration, Jodi Pettit

Marathon Story from the Deseret News

Here is the link to the story in the Deseret News http://www.deseretnews.com/article/865618580/South-Jordan-mom-eyes-Boston-Marathon-despite-debilitating-disease.html?pg=all

Moving With Purpose

The National Arthritis Foundation Published a very nice and inspiring story about me. Here is the Link: http://www.curearthritis.org/moving-with-purpose/