Hello friends – it’s been a while since I’ve posted. You’ll have to forgive me – you see, I’ve started this post over and over again, but it never really came together the way I envisioned. And it’s a pretty important post, so I wanted to get it “right.” I guess talking about it makes it real, and up until a week or so ago, I wasn’t sure if I was ready for that step We’ve been through a lot together – you and I – and this is just another phase, another part of the process. Thank you for your support – as always, it means the world. Read on!I’ve always felt that the mountains are calling my name. It doesn’t matter which ones or where; up until recently, climbing Mt. Palomar on my bike was “where I found myself”, I fell in love with Nathaniel all over again while hiking the rugged terrain of Alaska last year, and from my home in Southern California, I find great solace when looking towards the peaks of East County.
Yes, the ocean is wonderful and blue, but give me a winding trail, the promise of a USGS survey marker (or not), hilly topography, and a group of willing friends, and I know – regardless of elevation gain (or loss), cold temperatures, and the threat of bears – I’ll be happy.
I never really knew how much I enjoyed hiking and backpacking until this past year – first as a way of recovering from last year’s Ironman Coeur d’Alene, and then more recently when I kept falling ill. Times were tough, as they would be for anyone, but I always felt happy while hiking distant peaks. I felt alive. I felt normal and healthy. I felt like myself.
Training and preparation for races fell to the wayside, with one bad health episode after another. Between too many sinus infections to count, pneumonia, the DVT/PE (remember what I said?: GO to the nearest hospital IMMEDIATELY if you start getting a cankle or any sudden swelling) – this year has been completely different from last.
I don’t have any regrets though, and I’m dealing with the anger and sadness. Nope – it’s not fair; but then again, life rarely is for anyone. And just when we think we’ve got “stuff” figured out, Mother Nature throws another curve ball our way.
If anything, this year has taught me to roll with the punches, take myself less seriously, do the things I love with the people I love, tell Nathaniel I love him multiple times every day, call my friends and family more often, and embrace the simple pleasures – because at the end of the day, it’s the simple things that make the biggest difference.
For as long as I can remember, I’ve always had odd blood test results. My counts were always a bit off – too low on one end, not properly formed in a different way, with all sorts of different markers in between to add an extra bit of confusion and exasperation. I remember telling Nathaniel a little over a year ago that, “something isn’t right….” – but not knowing what it was OR how to test for it.
When I switched to Scripps from the Navy Health Care, my doctors immediately noticed a few abnormalities. But we thought – in part – it was due to the pneumonia and multiple sinus infections. I was due for another round of blood tests late June or early July – but when my body decided to form, develop and grow a major thrombosis, and subsequently throw a sizeable clot into my lung (directly through my heart…. Do not pass Go….do not collect $200…. Go directly to Jail) – the planned testing fell to the wayside, and instead I had multiple blood drawings for various reasons.
And still; my counts were off, my numbers were WAY out of whack….but there was no “real” indicator that something major was wrong. From the outside, I appeared a happy and healthy late 20-something female – with a love for Peanut Butter Cups and Swedish Fish. I was extremely active, did most of the things I wanted to do (minus the open water swimming bit… we ALL know my fear of sharks), and followed a healthy lifestyle. It just didn’t add up.
Eventually (and trust me when I say this could be a LONG post, so I’ll cut to the chase) – I was referred to one doctor, who referred me to another doctor….who ordered an entirely new round of testing. A few results came back positive, and towards the end of August I found myself on a first name basis with the phlebotomists at my health clinic.
Awesome.
You know it’s just fantastic when you have multiple standing orders at the lab – from different doctors.
But throughout this ordeal – I kept reminding myself that it could be much worse….and that I have so much to be grateful for, am lucky in so many ways. I knew that Nathaniel was concerned, and he did the best he could to support me through this process. It’s hard answering his questions when, half the times, I didn’t even have the answers myself.
When I was first given the prognosis of “lupus” – I didn’t know what that meant. Naturally I turned to Wikipedia (and yes – I’m sure my doctors are rolling their eyes), and other medical sources online. I wanted to know more about my diagnosis – information is, after all, power. Also, I wanted to be prepared for a long list of questions for my doctor(s).
Would you be surprised, if I said that I researched and wrote down tons of questions?
No – I didn’t think so. There were three full pages of inquiries (double sided). I’ve always been thorough.
Essentially (and you’ll have to bear with me, as I’m still learning myself), Lupus is a type of auto-immune disorder, where one’s immune system attacks its own body’s cells and tissues. There’s no real understanding of why someone has it, and every case that presents itself is different. The course of the disease is extremely unpredictable, with periods of illness (called flares) alternating with remissions. Lupus is known as one of “The Great Imitators”, because it often mimics or is mistaken for other illnesses. Diagnoses can vary widely between patients, and some people can suffer for years with undiagnosed symptoms.
In my case – my doctor’s believe that I’ve had this for at least ten years, but most likely many many more.
The great news – is that we’ve got medication that can help control the flare-ups. I’m starting on a very basic Lupus medication, and we’ll see how my body responds to the therapy. I’m trying to stay positive; because I would rather know than not know.
Thus far, my doctors believe that the Lupus is affecting me in three specific ways: 1) High Photosensitivity 2) Hematological 3) And I tested positive for something called Lupus Anticoagulant.
What does this mean?
Well – for starters, exposure to sunlight can affect my health. As someone who loves to be outside, leads an active lifestyle, and lives in Southern California – This. Just. Plain. Sucks. Ass. For years – in spite of copious amounts of sunscreen use – I’ve dealt with sunburns and redness. And the difficult part? I thought it was my fault – I thought I was doing something wrong. So…. Major photosensitivity – check. (Suddenly retirement to the Pacific Northwest or Alaska doesn’t seem so far reaching. Except for the bears, of course.)
And my Photosensitivity in turn, can lead to Hematological flare-ups. Without getting into too much detail, my white blood count in extremely low, red blood cells are oddly shaped, and my body’s ability to fight off infection just plain sucks. And there’s some other stuff – but well, I’ve thrown a lot at you already. But it is what it is, and in spite of my best efforts – I can’t will myself to feel better. This is unlike a race, not at all like going for a run… I can’t just will myself to finish. It’s a different beast all unto itself; not tangible, something I can’t touch and make better through practice or perseverance. It’s all part of a process – one that I’ve gradually learned to accept.
I don’t like it – but I’m learning to accept it. I think that’s why this post has been so difficult to write, and more difficult to publish.
The third component is a bit trickier, and something that raises a red flag immediately, especially given my history of extreme DVT/PE. If you want someone who can grown one heckuva blood clot, that would be me. The Lupus Anticoagulant means that I naturally produce “sticky blood” and have a higher predisposition towards clotting. I’ve had two tests that both came out positive for this, and will be taking a third (blood test) in early November. As of now, we’re assuming that blood thinning medication will be a lifelong plan.
I’ve spent the past three or four weeks trying to figure out what all of this means – both short term and long term. It’s no longer about training and racing….right now I just want to enjoy the Little Stuff with my friends and family – things that make me happy. And I’m grateful for the opportunities where I get to do just that.
The theory is that I’ve had a major flare-up since sometime last September 2009 – when I first started feeling ill and having breathing difficulties. I spent SO much time in the sun during my IM Hawaii buildup, and there were undoubtedly other stressors that triggered the flare. From a triathlon perspective, part of me is really sad when I think about this. I didn’t feel like “me” going into Kona, but chalked it up to Ironman training and the fatigue that can accumulate with a long season. I think I could have done so much better in Hawaii had I been healthy –
And I’ve cried so much about that already that I don’t want to cry any more. Because looking back on it, that was seriously one of the hardest things I’ve ever done, and it saddens me to think that I may not have had the race that I could have had – through no fault of my own accord.
On the flip side…I wish I could go back and give myself a hug. I am so proud of what I did, of how I physically and mentally held it together throughout the entire IM process. And doing it while dealing with a major Lupus flare-up, makes me love the person that I am even more. It wasn’t easy – but I did it. I also have some pretty incredible friends and family to thank – your support means even more...I didn’t go it alone, that’s for sure.
And now I understand why it was so different from Ironman Coeur d’Alene. I never thought I would say this – but thank goodness for ‘May Grey’, ‘June Gloom’ and coastal fog. I never thought a weather phenomenon could affect my health for the better, but apparently it can.
Remember what I said before about retiring in Alaska or the Pacific Northwest? Minus the bears, it sounds pretty darned good right about now.
But to talk about my Lupus diagnosis in terms of triathlon seems silly and superficial. There is so much more at stake than this sport.
My long term and short term goals remain largely the same: lead a happy and healthy life….doing things I love with the people I love. And as always – everything else is just icing on the proverbial sheet cake.
When I first learned of my diagnosis – especially with regards to the hematological and lupus anticoagulant (and a lifetime on blood thinners) – my thoughts were not with this sport, or never racing a triathlon again (one of my new mottos: never say never). Instead, I thought about my life with Nathaniel.
Even though we’ve been together for over ten years (holy cow!) – there is still so much we want to do, an entire lifetime ahead of us. I would gladly trade all the sports in the world, if I could just wake up next to him, share a cup of coffee, and do all the things we love to do….the simple things. Going for a hike, walking to the Daily News Café for breakfast, Pizza Port for a pint…
The thought of NOT being able to enjoy life the way we have because of my health saddens and scares me. I know that I’m not the only one, though. Anyone (and their family/friends/loved ones) dealing with a major illness or health scare, shares these same sentiments.
The flip side: I’m not willing to let my health get in the way of my happiness – because there is SO MUCH to be grateful for. So…. I might not be able to bike safely because of the blood thinners… but that doesn’t mean I can’t continue to run and swim. Or go backpacking with friends…Or dabble in outrigger canoeing….Or get in a rowing shell again….Or...climb 10,000+ foot peaks in search of a USGS Survey Marker while watching the sun set....Or – the possibilities are simply endless.
For so long I’ve been focused on triathlon and doing the very best that I can within this sport. And that takes A LOT of dedication, a large commitment – both from me, but also from my family/friends. Anyone who pursues a passion (athletics, but anything – for that matter… music….art….work….etc) – knows that it takes time, dedication, sacrifice, commitment, and a whole host of other adjectives. I think the most successful individuals are those who can balance – who manage to pursue excellence with having fun and enjoying life/family/friends/etc.
Last year, I never ever ever would have spent a week backpacking through Yosemite. Not that I wouldn’t have wanted to… but I was too afraid of missing a key workout, of not being totally focused and 100% ready when I lined up on the starting line. That’s in part, what made me a successful athlete – that’s what it took for ME to be ready on the starting line. Complete focus… some people can do it differently, though. And that’s okay.
This year, well – we all know that it’s been different. And as such, I’m doing things that I wouldn’t normally have done in the past. It’s not a bad thing; I’ve finally accepted the fact that I’m in a very different place. One isn’t “worse” or “better” than the other – it’s just called life.
Not biking has been hard for me. And with a lifelong dependence for blood thinning medication, I have some pretty big personal doubts about my ability to race triathlon in the future. Staying healthy is hard enough, as I never know when I'll have another flare up, or how the flareup will affect me. As for the thin blood: it’s just not safe – and there are no guarantees. I’m at the point where, although I LOVE the sport – it’s the people IN the sport that I love more. Yes…I could probably still bike outside; but at what cost?
I know the chances of bike crashes and accidents are slim, and I’ve had a pretty safe record in the past. But I have crashed my fair bit as well…and I know how precious life is, how much I love my friends and family – internally bleeding to death because EMTs can’t stop my blood flow is NOT how I want to go. I don’t think I could happily ride my bike, if every time I went out, I was worried about my safety – worried that one crash and an inability to stop my blood flow could end it all.
Seriously – knowing my luck, it would probably happen on my FIRST ride out. And for those who are wondering – this is EXACTLY why I have a hard time swimming in the open ocean. Yes – I love love love the water; but this is totally superseded by my conviction that with any stroke, I could be eaten by a giant shark below. Is it likely? No. But still…. The worry is there. Back to the bike and returning home safely-
Honestly – I think about that every time I go for a ride…but to have it heightened by the knowledge that I’m a lifelong Coumadin person – that’s hard. Some people can deal with that, and maybe one day, I’ll be able to as well. I just know that in the interim, there are SO many things that make me happy – so many experiences that I get to enjoy.
And at the end of the day, I want to be able to enjoy a long and happy life with my friends and family – doing the things that WE love to do. Together. The pressure of planning a race season and subsequently worrying about NOT getting sick is not something I want to deal with. The "not knowing" is the worst - as it is for many people. I’ve had a hard enough year, had enough near-death experiences that I’m a different person from 365 short days ago. I’m looking at life with a different pair of glasses, so to speak.
I’ll continue to run and swim for as long as I can. And maybe I’ll hop into a rowing shell… it’s been 10 years since I rowed seriously – who knows? The worst that can happen is that I flip a boat – and having done that twice already, it’s not all that bad. Then there’s the backpacking…. Nathaniel and I are already planning a through hike of the Lake Superior Hiking Trail sometime next year (health permitting)… although I had such a fun time in Yosemite with a great group of friends, that I’m reconsidering…..
Some of my happiest memories have been in the sport of triathlon. I wouldn’t be the person I am, without those experiences. I’ve also learned so much about myself – who I am, why I do the things I do, how to be happy – while participating in this sport. And I’ve made some of the most incredible, absolutely BEST friends ever. Triathlon (for me) is less about swim-bike-run, and more about the amazing athletes and supporters that I call friends.
I’m embarking on a new stage of my life. It’s been really hard to write this post – because I know to a certain extent, that I’m closing a door on one chapter of my life. But when one door closes, another always opens. At least – that’s how I’m looking at it.
On a deeper level though – there are ALWAYS doors open, all around. It’s just a matter of whether or not we choose to go through them. For so long my door has lead me to the sport of triathlon and elite racing. Now – I find myself heading for a different path all together.
I’ll still write and take pictures – continue to train for my November half marathon…but I’m excited about the prospects of trying new things. There is no “right” way to this wonderful adventure we call life. There will be some new bits as well – backpacking, and who knows what else? The possibilities are, I’m happy to say, endless.
I’ll conclude by quoting myself – I was reading over my IM Hawaii race report the other day. Just before I started with the actual race report, I wrote the following. For what it’s worth – I still feel the same way today.
It is what it is; it became what it was meant to be. And in the end, I can only take away the experiences and learn my lessons accordingly. This is life, and I feel very fortunate to have these opportunities in the first place. And for that I am grateful, and happy.
I guess some things always stay the same. Thank you for your love, friendship, and support. And as always – hug your family, tell your friends that you love them, and take the time to enjoy the little things… because that is what truly makes a difference, what makes us who we are.
