Monday, April 25, 2016

Being Boston Strong

I had some folks reaching out to ask me if I'm ok after seeing my Boston Marathon result, and I so much appreciate the thoughtful messages. I can imagine how my time looked odd to those who know me. After all, I was an hour slower than my BQ time 11 months ago. I'm usually a pretty consistent athlete, so this was certainly an atypical performance for me.

I am ok—kind of! No injuries, no race-day disasters, no bonks, no nutrition woes. And in fact, this race went way better than I expected it would! I am very pleased with my 4:28 finishing time, and pleased that I was able to run most of it, probably 90 percent, not walk. I had been mentally preparing for a 5-7 hour day with mostly all walking...

That said, there is certainly a reason why I was slower and couldn't run to my potential this year. I wanted to wait until after Boston to talk about what's been going on. I'm ready now. "Project Open-ness" continues :)

The Symptoms & Diagnosis
It's been a tough year so far and I've had to put health and healing at the forefront again. Late February/early March I started investigating and testing because something was off and it had been off since the new year. I had some unusual symptoms, unlike anything I'd every experienced. The most disturbing were my hands—they'd become chronically swollen/puffy (I couldn't even wear my rings), and had weird red spots surfacing on them (but not a rash). There were other things too like unexplainable fatigue, brain fog, weight fluctuations, odd aches and pains plus sore joints especially in my hands, increased sensitivity to foods that were once no biggie, and a greater intolerance to any toxin like wine. I was congested daily, and my gut and digestion were all over the place again, definitely some kind of setback. I just seemed so sensitive to every little thing! All these new symptoms; yet, nothing I did had changed, at least that I know of. Diet, training, work, life—all the usual. I'm not a complainer so I tried not to make a big thing out of it. But I was getting concerned. My gut feeling told me something was up and I was compelled to find out more.

After consulting with a couple doctors and practitioners, researching, zeroing in on possible issues and doing mega blood testing, I got my answer on March 2:

I was diagnosed with autoimmune disease. 

Autoimmune (AI) disease is when the immune system attacks healthy tissues by mistake. Symptoms and severity manifest in many different ways. There are more than 100 kinds of AI diseases, with more than 700 million affected around the world. AI diseases are connected by one central biochemical process: An rogue immune response caused by systemic inflammation.

To put it another way: “Autoimmune diseases are born when your body is working hard to defend itself against something potentially dangerous, such as an allergen, a toxin, an infection, or even a food, and it fails to differentiate between the intruder and parts of your own body. Mistaking certain types of tissues for harmful substances, your body turns these antibodies against itself, wreaking havoc on your organs.” -

My official diagnosis was early-stage lupus and rheumatoid arthritis (RA), which the rheumatologist called "rupus" being that it was a blend of the two but not extreme in one or the other; more leaning toward lupus. For example, I am certain I was not in as much pain as you would expect with a typical RA case, and I also tested negative for rheumatoid factor. I got second and third opinions just to be sure—all in all I reached out to functional health practitioners, my MD friends in addition to the local rheumatologist (who also gave a physical exam to further validate her diagnosis). No one doubted the diagnosis.

Why Me: Seeking Answers & Solutions
The news came as a total shock as you can imagine. But wait, I'm healthy! Being healthy is my thing! What is happening in my body and why? Was this my fault? Was it genetic? Was it both? Why now? Why me? These are things to which I did not yet have answers. I didn't even fully know what lupus was until I was told I had it! Once I wiped away the tears and accepted the reality I got straight to work trying to answer the biggest question of them all: WHY ME?? If I could find out why, then there's a good chance I could fix that and fix the condition.

I knew enough of conventional medicine's approach to AI disease that this was not the route I wanted to go for treatment. Conventional medicine says that basically we don't know why people get autoimmune diseases, and that there is no cure; at best you can manage symptoms usually by using drugs to fight inflammation and suppress the immune system. Often hardcore drugs are prescribed like prednisone and pain killers, and even regular use of NSAIDs, all of which have negative side effects.

On the other hand, functional medicine will answer the question of "why me?" and provides hope for healing. With this medical model we can hunt down root causes and thus find solutions, rather than just manage symptoms. Functional medicine evaluates a person's whole history to determine why an autoimmune disease occurs. What is the source of inflammation in the body? Why did the immune system get overworked to the point of getting confused and waging war? There is a plethora of information out there—case studies, research, books, articles, etc—that outlines common underlying causes to autoimmunity and healing success stories. There's hope! I am not saying these things are a cure. There still is no cure, but with the right tweaks you can put your autoimmunity into remission and live a normal life. Just don't slip back to old ways that led to the AI to come about in the first place. I can do that! Functional medicine FTW again!

I read books like The Thyroid Cure by Michelle Corey (great resource for all AI issues not just thyroid) and Dr. Amy Meyers' Autoimmune Solution—I felt so connected to each woman's story, nodding and agreeing with how their stories paralleled mine. For example:

"I was shocked... Because I was doing what I thought were all the right things already, being diagnosed with an autoimmune disease was shocking and frightening /// [It] was a real wake-up call for me. I discovered you can be doing all the right things—or what you believe to be the right things—and still get terribly ill." - Dr. Meyers
... That's what I'm sayin! Reading those words by Amy made me feel so much better. Furthermore, Amy is an amazingly brilliant doctor, which helped me come to terms with the fact that even the "best" and "smartest" who seem to have it all figured out may be at risk, and it's nothing to be ashamed about. This helped me because, to be honest, at first I was feeling guilty, responsible and most of all like a failure—I had invested so much into gaining good health, and this is what happens? Was this some cruel punishment for my past sh*t? But that was not the right way to approach it, and thankfully I was able to step outside that silly mindset. At the end of the day, I realized this is just one of life's many challenges and it will make me smarter, wiser, more compassionate to myself and to others, and an even better coach to my clients.

I read other books, conducted endless research online, listened to very specific podcasts on the matter and reached out to my amazing network of health professionals, including my main practitioner Brie Wieselman who thankfully is an expert on these conditions.

Brie especially drilled in the point that I simply couldn't be so hard on myself and couldn't look at this as if it were all my fault. This didn't happen overnight and it didn't even happen over a few months; this disease was a lifetime in the making, and a very intricate combination of variables—many of which were out of my control!

On Track To Healing
I started to truly see and understand the patterns that lead to autoimmunity, and the light bulb went on. My whole life—a combination of variables in and out of my control—combined with the genetic susceptibility played into triggering my AI disease. (Many experts cite that genetics are one- to two-thirds responsible for one's risk to developing an AI disease.) The say leaky gut and gut dysbiosis are a huge factors and I know those have plagued me for years, not to mention chronic stress. It was starting to make sense. As such, I gained hope and got excited. Hope that I could and would heal. It would take a mountain of work—I've been calling it my new full-time job—but it'd be worth it!

This post is intended just to share the news of what's been going on and in this blog post I dive more heavily into specific causes of autoimmune disease. I will discuss the main causes of why I developed an autoimmune diseases, specific details of my healing protocol (it's been eight awesome weeks so far), and everything else I'm learning along the way including preventative information. What an education it's been! It's actually increasing my passion for functional medicine; if I could only figure out how to go back to school to become a practitioner—without too much stress ;) I digress. 

Anyway,  I started keeping a daily log on me—everything that could be significant. It took a few weeks on my healing protocol to start seeing and feeling the results, but it was undeniable that what I was doing was already working! I know I'm on the right track; the real results I'm getting are mind-boggling. I also think I caught this very early so that helps too. For example, my hands are no longer swollen and affected, I can literally feel that my detox & methylation have been rebooted, and my gut is very much back in order.

A huge help was doing four weeks of a strict Autoimmune Paleo Diet (AIP) protocol to eliminate any trigger foods and/or gut irritants, which wasn't "fun" at first due to some pretty gnarly restrictions. No eggs, chocolate, nuts, seeds, nightshades, caffeine!? The horror! Meanwhile, I was totally fine eliminating alcohol, gluten, dairy and non-nutritive sweeteners. It was an adjustment, but in the end it was so empowering and eye-opening, not that hard to follow, and it even allowed me to get out of the rut of eating the same old things day in, day out. I can't say enough good things about the benefits of a (temporary) elimination diet, disease or not.

During my reintroduction phase I was very lucky to have success with most the foods and even a bit of red wine. I will say, though, I think I've lost most desire to drink at this point—it's just too risky to justify going back to my glass-a-night kind of habit. I'll also keep nuts and seeds to a minimum because even though I've been ok with little bits, I still believe they are a gut irritant. I haven't and won't return to gluten anytime soon, nor dairy—minus one exception: After the Boston marathon, there were Italian pastries and cannolis that showed up at our place, and I decided to enjoy. It was a first, and I have no regrets.

All the reintroduction was complete before our Boston trip, and my plan was to use Boston as a test. It would entail a lot of eating out, and I was excited for that, excited to see how my body held up and if I would get a setback or be fine.

On Running with Autoimmunity
With all the improvements I've seen so far, the one area that was and is still suffering is my running. There's no doubt that by April I felt in a much better spot health-wise and like I was getting the AI condition under control, but running was still a bust. I know why: My body was/is putting all energy into healing and there's not one ounce of energy leftover for athletic performance at this point. I had to respect that.

I mostly shut down marathon training as of March. My body simply was not responding to the running I wanted to do so badly for Boston training, and even short easy runs took a monster effort and left me more fatigued than usual. As such, my long runs got shorter instead of longer, and became less frequent. I gritted out a couple more long sessions in the final six weeks before Boston, but they were more akin to a death march rather than quality running. I cried. It hurt physically and mentally to feel this reality. Meanwhile, any intensity I had been doing was out; a bummer as it had been so fun! My aerobic/MAF runs also slowed incredibly, and I was walking a ton more on every run. I quit all strength training because it hurt and made me too sore. It was not your normal marathon training; it was not normal Tawnee training ;) It was sad to see my fitness slip away, but I got used to the new norm eventually and gave myself a little more self-love and respect, which had been lacking. Instead of fighting the inability to train I gave myself a pat on the back for any exercise outing. Likewise, I gave myself a pat on the back for knowing when not to exercise or push it, and to rest instead.

I had everyone telling me to just shut it down and don't run Boston. But I couldn't quit. I wasn't ready to give up. I couldn't let it go that easily. I needed to do it for me, just this last one. And then after Boston I would shut it down and not train/race until it was time again.

Before Boston, I "participated" in the Ragnar Relay with my amazing Endurance Planet team and that was a very emotional reality check that even if I wanted to race hard my body was saying no. I missed my old athlete self. Thankfully my EP team consisted of kind, understanding people who were my rocks, and not to mention they all happened to be great runners so we still were 5th or 6th overall out of nearly 700 teams!

Ragnar verified that I could not do anything stupid in the marathon (i.e. I could not try to race like my old self but rather run appropriate to my current condition). I honestly thought this could mean a 5-7 hour day in Boston. I really didn't know. I was willing to do whatever it took to cross the finish line and I was ok with a really long walk.

And Then There Was Boston
Sadly, to add to the hard times, the night before the marathon our amazing dog of 12 years had to be put down. She was diagnosed with cancer, and her condition declined so incredibly fast. I said my goodbyes to Sydney Arrow before we left for Boston, bawling over this dog who meant so much to me. I was hoping she'd hang in until after I got back, but she was suffering so badly, it was obvious, and my parents couldn't bear to let her continue in that state. So on Sunday marathon eve I sat on Face Time with my family as they laid our Sydney Arrow to rest. It was beyond difficult to go through this; I'm just thankful for modern technology that allowed me to be in the room with my family even though I was 3,000 miles away. Thankfully I had John by my side the whole time.

Monday morning came. I surprisingly woke up with a really strong mindset and attitude. It would have been easy to stay tucked in my bed and avoid reality (who would blame me at this point?), but no way. I decided to rise to the occasion and use this marathon as a test of strength. Do it for Sydney, do it to show that this AI disease won't ruin my life. Persevere.

Still, I wasn't sure if I could do it. I was nervous in a different way than usual. I used to get nervous about how I'd perform and what others would think of my times; but at Boston those were the least of my worries and not even thoughts in my head.

Eventually at 11 am (so late lol!) the gun went off and the rest was magical. I'm certain I was in a state of flow. I was able to just be. It was hard, there was pain, but it was not impossible and I felt at peace. I was respecting my limitations and in return my body allowed me to run. I was running, and actually faster than I expected!! I was 100 percent grateful for each step I took that led me to Boylston Street. I've never been so proud of a "slow" race before and my 4:28 finishing time felt like a gift. The whole day I knew I had my Sydney Arrow running next to me in spirit, along with all my friends and family who knew of my condition and were rooting for me. So much emotion went into crossing that finish line. It was a moment I'll cherish forever.

A lot of people make excuses why they don't perform well in their races. Heck, I've made tons of those excuses in my time (I'm sure some you can find on old blog posts right here lol). I'm sick of that shit. Own it. Own the situation. Whether you had a good, bad or mediocre day, it is what it is. You'll be so much happier and better off if you just let it go, take it from me. In doing so, you'll find the silver lining in all your performances.

I'm reminded of pro triathlete Amy Marsh who recently kicked cancer's ass (GO Amy!). She posted a tweet not too long ago that said, "Ran 20 minutes today. No walk breaks :) #10monthstoday." Now that is what I'm talking about! Twenty minutes of running is nothing to most of us, but in her situation it probably felt as gratifying and special as winning the world championships—and rightly so! What an incredible woman she is to fight such a battle, win, and now be making her way back. I just can't say enough awesome things...... I'm not trying to compare my AI disease with cancer, but I think I can now better relate to what it feels like to receive some really shitty news, fight to overcome and deeply appreciate the baby steps made on the path to healing. Being diagnosed with a disease affects everything; it changes you. It changed me as an athlete and a person, and I have to believe these changes are for the better. No matter how fast or slow, I won on Marathon Monday.

At the end it was all smiles! Thanks to Vespa for fueling my run. I was slow thus in total fat-burning mode,
and Vespa got me through the day. 
Get a 20% discount on Vespa when you use the code #EPRagnar2016Expires 4/30/16.

Thanks for reading.

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  1. Thank you so much for sharing your story. I wish you best wishes on healing and will look forward to updates.

  2. So happy that you are on your way to healing. I've had friends with this terrible condition and I honestly hope you get over this soon. I'll be sending all kinds of positive vibes for your recovery. And I bet I won't be alone :)

  3. Thanks for sharing your story. Hang in there!

  4. So sorry to hear of your diagnosis. I am, however, glad to hear that you have chosen to take it head on and utilize functional medicine vs. the typical allopathic approach.
    Great luck to you on your endeavor to kick this disease process squarely in the teeth!

  5. Best of luck! Thanks for all that you do!

  6. Life is full of opportunities to realize we are human and can't control everything, isn't it. So glad you got to have the Boston experience and enjoy it. Heartfelt sympathy for your loss (Sydney) and may she rest in peace.

  7. Oh my god Tawnee my heart is crying for you having to let go of your beautiful puppy and find out this diagnosis all in the space of a few weeks. My lab in Aus is currently researching autoimmune disease so there are heaps of new developments in the pipeline that are kinder on the body. Sending love and good vibes, you are an inspiration to all us tri chicks out there and we are in awe of you and your strength. Hugs xxx

  8. Oh my god Tawnee my heart is crying for you having to let go of your beautiful puppy and find out this diagnosis all in the space of a few weeks. My lab in Aus is currently researching autoimmune disease so there are heaps of new developments in the pipeline that are kinder on the body. Sending love and good vibes, you are an inspiration to all us tri chicks out there and we are in awe of you and your strength. Hugs xxx

  9. Tawnee, oh my goodness. I have been listening to your podcast for about four years and you have been an absolute inspiration to me! My heart breaks for you with all that you've had to deal with. I admire your courage and determination in going ahead with Boston - despite the heart break you were feeling, and turning it into a celebration of Syd's life! AND I know that you are armed with the knowledge and the right attitude to face AI disease head on. Please keep doing what you're doing - you truly inspire LOTS of us women out here!! Hugs and love.

  10. Tawnee I hate to hear the struggles that you are having to go through, but I hope that through all of this something much greater will come for you and your passions.

    Wes (Keebler)

  11. Oh, I had no idea. I ran Boston this year and would have found you and given you a big hug. Keep up the fight and know that I never miss an ATC episode with you and Lucho. I will be thinking of you guys when I tackle Western States on June 25th. Keep fighting hard!!