Since being diagnosed with Dermatomyositis in April 2017, Tri has had a lot of people reach out with similar health situations and stories, who are still in that messy, scary place of trying to figure it all out. In the beginning of his health scare, when we felt clueless and unsure where to begin on the road to recovery, we often wished we could have a glimpse into how other people who had been through this already went about getting healthy. Everyone's health journey is different, and each individual will find success with different things, but we hope you will find some comfort here, and that this can be used as a resource for those of you who are feeling lost, with all the gems and nuggets of wisdom from someone who’s been through something similar. Tri’s health journey isn’t over, but he came out on the other side after two years of grueling trial and error, and we want you to know that you will too.
The Full Story:
Onset of Symptoms
Beginning in November 2016, 6 weeks after the end of season and a minor ankle surgery to remove a lingering cyst that had been pinching for the last few years, Tri began feeling carpal tunnel like symptoms in his hands. When he woke up they were sort of numb and tingly, and the joints in his fingers were sore. It was becoming more and more noticeable as the weeks went on. By December 2016, the symptoms in his hands had only gotten worse, and he was starting to have more joint pain in his fingers, wrists and shoulders. He was noticing some shortness of breath, and more exhaustion than usual. We decided to get some blood work done, and he came back positive for Sjogren’s disease. Having none of the other usual main symptoms of this disease, they dismissed it as a false positive. We went to do a nerve conduction study thinking it could carpal tunnel syndrome. Then we went to a rheumatologist who thought it could be rheumatoid arthritis. We were lost.
Over the next few months things only began to get worse, and the joint pain and inflammation started spreading to the rest of his body. He was physically and mentally exhausted all the time. One workout and he wouldn’t be able to get up the rest of the day. By February/March 2017 his ankles and wrists were twice their normal size, he was unable to close his hands (they didn’t have the strength or the mobility to open jars or water bottles), his muscles were atrophying, his hips were so sore it took enormous effort to simply sit or stand, and just walking was extremely difficult. One of the doctors we saw thought to do a muscle enzyme test, and we finally felt like we may be on the right track when we found the results were well over the 6000 range, (they are generally supposed to be under 175). Still we had no answers as to why. We had seen a rheumatologist, infectious disease specialist, neurologist, internal medicine specialist, naturopath, allergist, the list goes on. Finally in March, we were sent by the USOC to see the specialists at the University of Utah. By the end of a long week they decided to do a muscle biopsy in Tri’s quad (another surgery), and after taking a look at his muscle tissue found it most closely resembled an auto immune disease called Dermatomyositis.
Here we were, 5 months after the initial symptoms came on, and Tri finally had a diagnosis. The hardest point about the moment we heard the name was staying away from Google. What’s crazy about these auto immune diseases is that they all look different. They categorize them with a name but they show up differently on each individual, which is what makes the diagnoses and treatment part so difficult. Luckily, Tri hadn’t experienced any of the skin issues that generally come along with this disease, but that also made the disease more difficult to diagnose.
The first step was to start on 80mg of prednisone per day. The maximum amount you can take. The swelling and inflammation left Tri’s body in just a few days and all of a sudden he was down 30 pounds. You could finally see all the muscle he had lost. Tri started taking Methotrexate, a medication used for many different types of autoimmune diseases and also cancer, which reduces inflammation and damage to joints by inhibiting the activation of folic acid in the body. By July Tri had begun slowly tapering off the Prednisone week by week, to see if the methotrexate would work on it’s own. He was getting weekly blood tests at this point to see how his levels were looking during this change. He also started on an anti inflammatory diet by recommendation of a naturopath, which eliminated gluten, dairy, and refined sugar. By August / September, Tri was down to 20mg of prednisone, and to our despair he had a flair up where his levels spiked again and he began feeling those similar feelings in his hands again. The
response was to go back up to 60mg of Prednisone, and start injecting methotrexate into his stomach weekly in order to see if it would have more of an impact. He also got on Plaquenil to help with the joint pain. Throughout this time he was unable to do physical activity of any kind because when there is inflammation in the muscles, it’s said that building lactic acid can cause permanent irreparable damage to the muscles and joints.
The Waiting Game
Tri filled his time with broadcasting for the AVP, starting a podcast (The Sandcast with Travis Mewhirter), improv/hosting classes, journaling, reading, working with a sports psychologist, Tai Chi, swimming in the ocean when he had the energy, his own wedding and honeymoon, trips home to Hawaii, and a lot of resting. After many ups and downs this whole year, finally in June 2018 Tri had seemed to be in remission for a while, was down to 15mg of Prednisone, had started touching a volleyball again doing light reps, and to our complete dismay, had a flare up (on his birthday nonetheless). It was at that point that we decided the methotrexate did not seem to be working without the use of the prednisone, and we decided it would be a good time to try an alternative treatment plan. The next thing we would try would be a monthly infusion called IVIG, also known as immunoglobulin therapy. The substance is made up of antibodies extracted from blood cells. This is what seemed to be the magic potion for Tri. Again, everyone is different. We were lucky that he responded well to it.
Designed to eliminate the symptoms ASAP
finding the perfect blend...
Necessary to feul your body to fight long term
When Tri was first diagnosed, he decided that he was going to put 110% effort into getting healthy; he needed his body in order do his job, and he wasn't about to give that up without a fight. This meant not only taking the medicine the doctors gave him, but also believing that there may be other ways for him to be proactive himself. Here are some tools he used...
Tri’s first move was to start on an anti-inflammatory diet, which eliminated gluten, dairy, and refined sugar. At first he went so far as to eliminate corn, nightshades like tomatoes, eggplant, peppers, and white potatoes, certain kinds of nuts that may be inflammatory, coffee, etc. These things he would slowly introduce back to see what kind of effect they would have on how he was feeling, but the gluten free, dairy free, refined sugar free diet he maintains today and will continue to maintain going forward.
Tri got on a pretty intense supplement plan following some in depth bloodwork and recommendations from his Naturopath. At one point he was taking over 40 pills a day, which is a bit much, and it was hard to tell
what was having an effect and what wasn’t. But this is definitely a good way to counter the other medicine and made sure your body is getting everything it needs to function the best. Tri also met with an Ayurvedic doctor in Bali and followed her supplement protocol for a few months.
Some key supplements Tri took for health related to auto immune:
A probiotic for gut health, especially if you are on an antibiotic
Omega 3 for reducing inflammation, lowering blood pressure, and curbing stiffness and joint pain
Calcium for bone and muscle health and to counter negative effects of Prednisone
Folic acid to create red blood cells, to counter negative effects of methotrexate
Collagen for joint pain and reducing inflammation
One thing that kept coming up for us when speaking with all of Tri's doctors was the idea that stress is a huge factor in causing or setting off an auto immune disease. This made a lot of sense for Tri, and while he may not have realized it at the time, the year leading up to the first symptoms of this disease was the most physically and mentally stressful year of his life. He was fighting for a spot in the Olympic games, travelled to over 12 countries, and played in 19 tournaments in a 6 month time span, then went immediately into surgery. Along the road to recovery, Tri worked with a few different sports phycologists and coaches, started meditating often, at one point doing hour long meditations daily for an entire month, did breath work (you can see him here at the Power Speed Endurance 'Art of Breath' Clinic with Brian Mackenzie on the North Short of Oahu). He also journaled and read a ton on the subject. As difficult as this might sound when you are feeling hopeless and unmotivated, it’s so important and proved to be a huge factor in Tri’s recovery.
Other things he tried ...
Human Garage LA
21 Day Meditation Challege
7 meditations, to be repeated for 21 days, (or as long as you want). Tri did Joe Dispenza's version (they cost to download), but I've linked a free version below as well. Tri did 28 days in a row and continues to do these meditations when he feels like it. Disclaimer: these meditations are long and you are guaranteed to have a lot on your mind, be patient with yourself and focus on staying present and it WILL get easier.
Day 1: Blessing of the Energy Centres
Day 2: Tuning into New Potentials
Day 3: Walking Meditation: Stepping into Your Future
Day 4: Reconditioning the Body to a New Mind
Day 5: Space-Time, Time-Space
Day 6: Walking Meditation 2: Higher Chakras
Day 7: The Pineal Gland: Tuning in to Higher Dimensions of Space and Time
The light at the end of the tunnel
Tri played in his first event in 20 months in July 2018. He was able to come back for the end of season, winning a gold medal at 3-star FIVB event in China, 3rd place at the Hawaii AVP international invitational, and placing 4th in a 4-star event in Las Vegas. Tri will continue with IVIG infusions once a month until he is able to ween completely off the other medications. But as his finishes prove, he is back and better than ever before, with more knowledge and a strong mindset and mental game.
“There were times when the circumstances overwhelmed me, and there will be more, but now I know 100% that these types of circumstances are just opportunities to make changes in my life that I may never have made otherwise. Change is naturally difficult, that’s a fact, but it ends in growth which makes me feel alive. Being stagnant feels like eternal boredom.”
“The most important thing that I wanted to feel if/when I finally got to return to the sand, was that I wanted to be grateful for the whole experience. I wanted to honestly feel that what I’ve learned and how I’ve changed is so valuable that I wouldn’t change what happened to me if I magically had the opportunity to do so … and I think I’ve achieved that.”