small victories, small setbacks

Last night at the NYU cycling team party I had the first victory of my cycling season so far. A very very minor victory, but still a victory.

Do you know what a wall sit is? It's when you put your back against a wall, and squat down so that your legs make a 90 degree angle. Your feet should be directly under your ankles and your hips should be at the same level as your knees. In a contest, you hold that position until somebody's legs give out under them.

I won 3 consecutive heats of wall sitting against the NYU cycling team before my legs started wobbling uncontrollably on the 4th round through, soon followed by grimacing and squeeking noises before I collapsed. That's my small victory for the season. And, a quite silly one at that. But, what else did you think happens at a cycling team party? We are all competitive people and we love showing off our legs! I am the wallsit champion, having gone 3 undefeated rounds in a row and taken on the strongest competitors present.

As you've been hearing, this season has been a tumultuous one for me so far. I ended last track cycling season phenomenally strong, and with great ambitions of making it to Collegiate Track Nationals this year. And, then, when my health took a dive this winter and has yet to have completely resolved, I was left without the ability to regain necessary strength to perform at the level I had wanted. I've been learning to deal with accepting what I cannot change, and trying to let go of the feeling of mourning for the season of high performance cycling that I had been built up to expect of myself.

Cycling is a strange sport. When you are strong, you feel like you can do anything. And, to some extent, winning requires the maintanence of that egotism. If you don't believe you can do the improbable, you never will. And, when you aren't strong, it is both mentally and physically painful.

Quite frankly, feeling so consistently disappointed can be depressing. It's a strange thing when teammates try to be supportive and say things like, "Oh, but you'll do great in this criterium race! It's a technical course, this is your race!", and yet I know that systemic inflammation and anemia is not compatible with performance. And, it's difficult to have to tell people up front that I do not have anything to contribute to team performance for that reason. It's not a training issue that can be resolved by working harder, it's an illness issue.

After a particularly difficult week of disappointment I had a conversation with the Yale team coach in which I told him that I was thinking about giving up on competition this season altogether, so as to not have the constant reminders of my poor performance. I said, "I just can't compete in this category with my health like this. Maybe I should stop training for competition this year and give up on this track season". His reaction was characteristic of the tough-love that cycling coaches tend to dish out, "What?! Do you have the memory of a goldfish?! You just did compete, and you didn't finish last! You are in category, even if it's not where you wanted to be finishing this season! If you have the memory of a goldfish then I'll remember that and in the future for your training plans!". 

There may have also been some added, more positive comments about how in the larger scheme of things I will come out stronger for this setback, and a more mature rider for it all. He said that this is often one of the challenges people who are wildly successful upon first getting serious about any discipline of cycling face inevitably, because they haven't been prepared to lose. And, he's right. It is a bit like throwing a silent tantrum to want to give up because I'm not winning.

Recently, I was approached by one of the big collegiate track teams about training with them (access to resources like time on the velodrome is so important!) and "working for them" this collegiate track season. As a track team of one person at Yale, it makes sense to make an alliance and play with one of the major forces in the field. And, I had to say upfront that I am not the same racer I was last year and that their offer of track time would be a simple donation with minimal return during the season. It was hard to say once, let alone twice when they didn't believe me the first time. But, remembering that this is just a temporary setback helped. And, I did say, "I'd love to work with you now with the intent of performance next season".

And so, the training goes on, while I try to remember the joy of speed for speed in itself.

Closing of the 2013 collegiate cycling season

Wow, these past two months of the collegiate road cycling season have been a blur.

There have been ups and downs, and I'm still not totally back together again healthwise - yes, this week I've been off the bike for 3 days already due to feeling generally icky and exhausted in a lets-not-push-through kinda way.

The highlights of the season for me:
1. having the honor of being the men's team captain and bringing in a season of regained team spirit and many victories all around. This photo is of an inter-team ride and pizza party with NYU. Who ever said ordering pizza while riding a bike is a bad idea?

2. taking the time off the bike (or on the bike, slower than normal) to teach skills and help bring a well prepared, confident group of new racers to the collegiate season. And, watching them win! It's true, as they say, those who can't do teach. This is what has really redeemed the season for me. Just last week I had the joy of seeing one of our new men's racers take a bronze medal at the eastern conference championships, and it felt like a win of my own.

3. remembering that riding and racing are not always about results. It's nice to win and do well, but sometimes finishing is winning. And, when you aren't killing yourself at the front, sometimes you get to appreciate the race course a lot more. I bet nobody in the front group of the race saw that waterfall midway through the climb!

4. teamwork. Again, sometimes finishing is winning. My favorite road race after getting sick this year was the RISD/Brown road race, a rolling course with Battenkill-like dirt sections, which was deceptively difficult and exhausting to ride. After flatting at the start line (oh!), and then hovering off the back of the race I caught a teammate who was placed to do well who had flatted, and offered him a wheel exchange (as I was not in contention, I would wait for the next wheel car to come). I then restarted on course as fragments of the women's feild was coming through and rode next to one of my teammates (no drafting allowed for those not in the same field!) for about 20 miles until the course took it's toll and she said, "The social portion of this race is over! I'm hurting and can't talk right now!" at which point I took off up the road and ended up catching a few guys from my own field, including my teammate Daniel. He had "bonked", or became hypoglycemic and his body stopped working properly after not fueling adequately in the first half of the race, and he was in baaaaad shape - swerving in the road, not making eye contact, mumbling speach. Knowing we still had quite a bit of milage ahead of us, and that we were in the middle of nowhere with no cell phones and only scattered marshals, the best option was to keep going. So, I gave him all of my remaining food and sat up as straight as possible to make myself as effective a wind shelter as I could so he could do less work, knowing that it would hurt but I had enough in the tank to make it work. And, then when the food wasn't enough, I started zipping back and forth to find more food from elsewhere (more GU from other riders ahead, a can of soda from a police officer, a biscuit). And, finally, with a lot of coaxing in the final miles, we both made it over the finish line together. Finishing is winning, and everyone on the team finishing is even more winning.


Above is a photo of me during that race while I was on my way back with the can of soda, looking pretty relaxed and feeling pretty good about the day despite being so far off the back of the peleton.

About half of the team at the RISD/Brown race weekend

Now that the semester is over, most of the undergrads will depart for home. But, riding in New Haven continues! I'm still hoping my health will get it together and allow me to be competative for the track cycling season. But, if not, I'll still enjoy the ride!

Back on the bike!!!

 I am officially back on the bike! At least a bit. I’m feeling slightly less flat-out awful than I had been over the past weeks, and today went for a 4 hour endurance ride with some other semi-broken racer friends (one is recovering from being struck by a car, the other from tendonitis).

Here’s hoping that I’ll manage to avoid more surgery in the future, if things keep on looking up. The difficulty of all of this is that at this point cycling may actually BE my only option for non-surgical treatment. Because of a melanoma that showed up on my ear over the course of one week last May, and was described as “surprisingly pathological”, many of the immune suppressant agents that are the go-to’s of current treatment for severe Crohn’s disease are totally out of the question. And, I’ve been through the ringer with everything else and it hasn’t worked. I’ve also already got the bone density of a bird, which means that prednisone is a dangerous choice for more than a week long course once in a blue moon.

And so, my treatment plan is to try to stay positive, avoid undue stress (but I have so many tests to take at school!), and keep riding and enjoying life as much as possible.  Why does this work? We do know that endorphins and exercise (independent of endorphins) help the body regulate inflammatory processes and intestinal health. For one thing, your intestines have neurochemical receptors and an entire network of nerves of their own to communicate with. It’s not entirely clear by what mechanism exercise and joy itself help control the inflammatory processes of IBD, as opposed to generally supporting a healthy system, but there is some evidence to say that it does.

Sounds simple? No. Consider for a moment what that means in the face of a painful and often disparaging illness. Keeping a positive outlook and getting on the bike even when I feel exhausted or otherwise horrible may be one of the most difficult prescriptions there is. Comparatively, I tend to think that Remicaide infusions were a piece of cake.

However, there is something also amazing about deciding to put off studying to ride in the sunshine because it is a prescription.

quality climbing right in my own backyard. sunshine but no spring foliage yet.

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Note: I really truly do not follow the “think positive and good things will happen to you” train of thought. Please do not confuse this post with that genre of [weak] logic. Bad things do happen even to those who are good people and try hard and have a positive outlook. But, because we know that neurotransmitters are partially influenced by emotion and stress, we can consciously control some of those internal processes by learning to alter the way we react to daily life. This general idea of the trainability of reactions is the premise of cognitive behavioral therapy (CBT). For some people, that might be helpful in managing stress related IBD flares. Personally, cycling is my stress management tool and joyful addiction, so I haven’t gone that route. But, because I really do believe in the science behind it, I have suggested CBT to a few of my weekly-stress-crisis having classmates who don’t have IBD but none the less do experience extreme GI upset every week before 

I ditched my doctor

If there is one thing that living with a chronic illness, and suffering some of the "worse case scenario" risks that are sometimes discussed as if they aren't real, I've learned that it is absolutely necessary to be your own advocate.

If something doesn't seem right, ask questions until it makes sense. Raise concerns. And, don't back down if you don't get a response that satisfies you. Nobody wants to be the victim of a case of medical malpractice, or suffer a poor outcome when it is preventable by communication alone.

After the last post, I had yet another potentially catastrophic miscommunication with my gastroenterologist. Dr. Proctor, who is supposedly an expert on IBD, demonstrated that she was unwilling or unable to have a conversation with a patient (me) about treatment plans and diagnostic tests. Even when concerns about incorrect or dangerous orders were raised, her response was, "This is the test I ordered, do it", and not even conveyed directly or with further explaination. So, sick of having non-conversations and receiving repeated orders by way of receptionists - as if I had not heard the first three times, I was done.

It was time for a change.

I filed a complaint with Yale Health detailing the mis/non-communication issues that I had been having, and the delays in needed care and resulting detriment to my health resulting. And, finally, the health center referred me to an outside gastroenterologist at the hospital (students are usually restricted to a small list of specialists who visit the health center only), who is "who students see when they have problems with Dr. Proctor". Apparently I'm not the first.

And, now, I wait for an appointment. Again.

I have a short prescription for prednisone, and am hoping that this mini-flare doesn't turn into something more serious in the interim.

Wish me luck! Since starting that prescription, my pain has decreased enough to get back on the bike a few days this past week. I'm a long way from being in racing shape, but at least I'm riding again.

First race weekend of 2013!

This past weekend Yale Cycling took the first weekend of the Eastern Collegiate Cycling Conference (ECCC) by storm! Well, mostly...

Unfortunately, while perfectly placed for a (winning?) sprint finish in the final lap of the criterium, I had a collision that sent my bike near-horizontal with rear wheel lift-off, and while I saved myself from eating pavement, I couldn't make up the momentum I'd lost as the field when by in a flash. I finished, still mid-field, in 26th. And, in making that near-crash save (if I had crashed at that speed it would have been far far worse!), I jacked up my previously injured ankle, which took me out of the road race on Sunday.

Here are some photos of the prologue, a short ITT. Note that it was about 28 degrees F outside. I'm not sure if that pain face at the end was due to effort or freezing cold hands!

Leadership without guts

The big news:

As proof that having an ileostomy and IBD doesn't have to hold you back from endurance sports, I am honored to announce that I will be serving as the new Yale Cycling men's team captain for the 2013 season.

Here's looking forward to an exciting year of cycling, as we are only 2 weeks out! Collegiate racing kicks off the first weekend of March.

Keep on doing what you're doing, whether it's cycling, running, swimming, climbing, hiking, or any other sport. Don't give up - who knows where you might go!

Wrong procedure! First lesson, listen to your patients.

I was planning on writing about meeting another gutless cyclist on a local shop ride, on Saturday, while I was taking it easy and still feeling pretty rotten after getting out of the hospital only 36 hours prior.

And, before that, I had intended to write a post about how becoming suddenly and cripplingly ill, and landing in the hospital for a few days does things to my perspective and priorities - and I don't mean that in the cheesey, lifetime special, sort of way. I mean, sincerely, that on Saturday after getting out, I rode my bike like it was both the first and last day I ever would again. And, it was glorious... and rainy.

And, finally, on the list of upcoming posts is one that was triggered by a request from another blogger. She asked a few folks with Crohn's or an ostomy to write about how their age of diagnosis effected their life course and development.
.....

But, instead, I find myself with a burning desire to write something short about the events of the day. At this moment I am feeling frustrated, close to downright angry. In followup to my recent illness I was scheduled for a bunch of appointments with my primary care physician and GI doc, and one minor procedure. However, my GI had to go out of town, and instead I was rescheduled with another physician for both my upcoming appointment and procedure. That's fine. Stuff happens, as inconvenient as that is.

Today, when the scheduler called me with the normal ramble about when to arrive, where to arrive, etc, she also said, "The procedure will take about 3 hours and you will need to have somebody pick you up afterwards".

Whoa! What!?

I said, "I think you must be mistaken. I do not need to be picked up because I will not be under any sedation. And, I think you have me down for the wrong procedure because 3 hours is too long".

Apparently, somehow there was some sort of major miscommunication and I was scheduled for a colonoscopy with general anesthesia! So, the scheduler apparently called the physician doing the procedure to try to figure it out. But, still the same thing! She told me that was the procedure I was scheduled for and was supposed to have.

Now, I'm a well educated and well informed person. I have no memory deficits, and I don't get confused about medical details. If there is one thing I know, it's that a colonoscopy 1.) won't work 2.) isn't appropriate followup!

At this point, I asked for the physician to call me so we could try to figure out how this confusion ocured and fix it.

The physician then had a medical assistant call me instead of calling herself. The medical assistant was in no way equipped to have any sort of conversation about the appropriateness of procedures, and was only able to reiterate that I was scheduled for a colonoscopy. She was very nice. I expressed my frustration that the physician had not called me, and that I thought instead of a one way conversation we needed to have direct two-way communication before I showed up on Thursday.

So, what happens next? The scheduler (who has some medical knowledge. a retired nurse ?) calls me back and reiterates again that all they are showing is a referal for a colonoscopy and that is what I am being seen for, and that I will be under general anesthesia. And, the tone was now changed, as if I was being a difficult patient and was making unreasonable and outragious demands: to not show up for a procedure that isn't correct or beneficial in followup - nevermind everything else.

Is this groundhogday the medical version!? Am I speaking a different language here?

Any patient should be able to voice concerns when they believe they are receiving or in danger of receiving the wrong treatment/surgery/medication/any care!!! It is our job to advocate for ourselves. If we don't, many times, nobody else will.

One of the first lessons I learned as a Paramedic was to listen to my patients (the coherent, lucid ones... and sometimes, especially the ones who aren't). They often have the answer. They know what happened last time, and can often be a great crystal ball for predicting what treatment will work best.

Sadly, I have yet to be taught that lessson at the Yale Medical School, either in the classroom or by example from the physicians practicing here at the teaching hospital.


And, here's an interesting scholarly article about how these sorts of errors in performing the wrong procedure or performing it on the wrong patient happen.


For the sake of my own health, I'll remain a trouble maker of a patient in their eyes. Who in their right mind would go under anesthesia if ANYTHING at all seemed wrong about the plan?