Monday, December 30, 2013

A long way to the top

Since the crash in August I've been plagued by knee and hip problems, not to mention the lingering, renewed Crohn's issues over the past year. It's been a (litterally and metaphorically) wobbly path back to cycling, with a lot of ups and downs.

I've worked up to finally doing some real distances again, but am still distrustful of my knee's integrity and shy away from any real torque or out of the saddle riding. My base miles are still low for this winter and my fitness is behind where I need it to be leading into the next racing season. I've got a lot of work to do, but it's looking up. I have a referral to a new physical therapist; one who worked wonders on a cyclist friend who was told they'd never walk again.

And, one more promising sign is that this weekend I did a relatively fast ride from NYC to Bear Mountain in Harriman State Park and back, which includes 6000+ feet of elevation with a 5 mile climb in the middle. It almost destroyed me, but I survived and even said, "Oh, this is it? I thought it was longer" at the top of Bear.

Here's to continued kneehab to come. If it wasn't hard, it wouldn't be fun. Right?

The view from the top of Bear Mountain, NY.

Sunday, December 29, 2013

Muckity muck.

Warm, cold, warm, cold, rain.... Snow, warm?

We've had some nutty weather over here in the NYC area. All of the snow melt has made for some very muddy riding earlier this week before things froze again.

Here's some lovely photo evidence of my rather impressive dirt tan lines!

sock lines!

dirt tan lines for December.

cycling mud masque, anyone? With a side of bleary, road salt splattered eye treatment.

Saturday, December 7, 2013

The season of cold-damp-rainy-snowy is upon us!

It's officially here! It's been here for about a month now. It's winter riding season.

Although sometimes it takes extra motivation to step out into the mist, or onto the frozen ground outside the doorstop, all hesitancy is always erased once I'm on my bike and moving.

Winter changes the landscape, making everything new again. Old routes covered in ice, or bare of leaves with new views at the top of climbs.

Into the wintry mist... friends, fun, and fog!

Tip for winter success: Order a case of those instant hand and toe warmers, so there is nothing holding you back from getting on your bike when it's freezing outside. Toe warmers make the difference for me, as cold feet is my big rate limiting factor.  Also, get some good waterproof shoe covers. Then, it's off into the cold-damp-beautiful world with you!

Monday, November 4, 2013

Chill'n out and doing some focused strength exercises

Since the crash in August I've been keeping it pretty low key. Not that I've had much of a choice, between a wicked concussion that kept me off the bike for about 6 weeks, and then realizing just how badly I'd messed up my knee once I was back on the bike. I've also continued to have some lingering Crohn's related ick. So, I'm continuing to ride it out, and try to enjoy the time I can get out on the open road even if it's at an easy pace.

The benefit of the easier pace is that I get to spend time with our newest riders on the Yale team. And, I must say, I do love helping folks master cycling skills like pacelining, cornering, and climbing hills! Getting to see the huge gains in confidence and the satisfaction of mastering a new skill is so satisfying.

40 degrees and sunny in New Haven! 

Plus, it's fall. And autumn riding means we are back to base miles anyway, so my easy pace is right on target.

I've also been taking the time to work on some other stuff while I've been in the saddle less.

The problem areas:

- Core strength: I have terrible core strength, which is likely because I have trouble with ab spasms on my ostomy side if I do much direct core work like sit ups.

- Medial leg strength: It's easy in cycling to work only the front and back muscles, as we have no side to side movement.

- Gluteus Medius strength: Yep, that's the muscles on the side of my butt. A lot of cyclists have  this issue. Have you ever seen a competitive cyclist on a bike and noticed that the side of his butt looked almost indented? That's the gluteus medius underdeveloped. And, according to my physical therapist friend (it was a strange night of casual consults and laughing about it), mine are sincerely lacking.  She said that my "massively hypertrophied hamstrings" had been doing all the work instead.

The remedy: 

- planks! Oh man, I am terrible at these. But, I'm making myself do at least 5 sets of holding it for 30 seconds with keeping good form before bed every night.

- Spider-mans: 2 sets of ten. From a plank-like position with your arms straight, bring one knee out to the side and touch it to your elbow. Then bring it back together with your other leg. Now do the same on the other side. This should make you side ab and back muscles burn.

- cross training: and by this, I mean cyclocross training. Yes. Running, leaping onto a built up road bike with knobby tires, and then jumping over barriers and roots. It's good for building stability in all of those other little muscles that don't get used in just moving forward. Still not sure what cyclocross is? Check it out:

- Actually cross training: Really, not bicycling. Walking vigourously while focusing on form - ie, not compensating for my lack of gluteus medius muscles by using just legs. It's suprisingly difficult to focus on using butt muscles while walking. Try it.

- Thigh master like it's 1992: Just kidding. But, same idea, squeezing a soccer ball between my knees while doing a slightly more upright wall sit. This targets the muscle groups on the inside of the thighs without activating the larger quad group.

Saturday, November 2, 2013

Awestomy Wrap Review

About a month and a half ago I got a new wrap from Awestomy, a new company that makes ostomy undergarments, and I have been meaning to write a review since then.

Beyond a review, I also wanted to talk a bit about what the deal is with wraps. I'm usually pretty amazed that so far none of my GI docs have ever seen a patient wearing one before, and no ostomy nurses I've encountered have had any idea such a thing existed! No wonder there are so many folks out there stressing out about what to do with their pouch as they go about life! No, you don't have to have it flopping about, or hanging outside of your clothing, as I've seen many a question on facebook groups and message boards. Tucking it in to a wrap helps keep you discrete and helps smooth out any contents. I'm honestly not sure how I'd function if I didn't have wraps to keep the pouch secure, and I can gaurantee that my wear time would be less due to the weight of the bag pulling on the adhesive. This is one of those product types (like Skin-Tac) that was a game changer for me, when I found the website years ago.

These ostomy specific wraps are different than a simple tube top, which you could wear around your waist just as easily, in that they have two inside pockets on the right and left side. This keeps your bag from resting against your skin, where the edges can be irritating and in warmer weather the plastic makes for a sweaty time. The pockets are on both sides so as to work for folks with an ostomy in either (or both!) location.

Personally, I'm a minimalist. I don't like having to fiddle with zippers, or velcro or other elaborate contraptions to empty, and I hate wearing any more clothing than I need to (no wonder I love cycling!). I also don't like the constricting effect of standard, old fashioned, elastic ostomy straps. I like wraps for their simplicity and freedom of movement, as well as low profile under a t-shirt or dress shirt. In the past I've had wraps from, and those are still the majority of my collection.

1. The wraps from are different in that the top is a bit higher and they have a silicon band around the top seam so it will not scoot itself down during activity such as running, biking, etc. For activity this is super nice, since repositioning a wrap mid-run is always a bit awkward.

2. The silicon band and higher waist ensure that the top crest of the pouch doesn't peak out over the top of the wrap, which was ever so slightly the case with the wraps. This is a nice features if I know I'll be changing in public (not that I care either way or have ever been shy!), running around topless, swimming, etc.

3. They come in more colors than white and black! I'm a fan of the grey and argyle.

4. The material is soft enough to be comfortable all day long, and the seams don't rub.

5. Customer service is awesome. I custom ordered a 27 inch waist size, and they were happy to oblige, despite that not being one of the standard sizes available. And, the size seems to be pretty spot on (note, I did order it a hair big due to my anticipated issue with the band, in case you were looking at the photo and thinking "that doesn't look tight at all"). Nice work, guys.

1.  I will confess that the silicon band does make it slightly harder to access the pouch and empty it - a very minor inconvenience, and I suppose I'm just fussy or lazy.

2. The band does make you aware that you are wearing something around your waist, not uncomfortable but aware, much in the same way that a loose elastic band on your wrist feels present but not uncomfortable. Again, maybe I'm just inordinately fussy, especially for somebody who spends a lot of time wearing spandex.

3. Finally, why no neon colors, guys?! Don't you know pink is the new blue for men in 2013?! Yet, these are all minor complaints, very minor complaints.

The verdict: Awestomy is awesome. The pros of having a wrap with a higher top and a silicon band to keep it in place outweigh the cons, and you can't have one without the other for this feature. Hot pink, or maybe some electric green (?), would make my day. Zebra print would also be sufficiently loud. But, I'll settle for ordering another grey one for now! Thanks for making such great products, Awestomy! I'm not sure what I'd do without such creative folks out there looking out for their fellow ostomates!

Friday, September 6, 2013

It could have been worse. A short story.

"Oh god, I don't know what to do..." said Justin.
"I think Brandon's really hurt."

Brandon wasn't moving. He was laying in a creek bed with shallow water and large rocks, his eyes closed, and suspiciously shallow breathing.

He had come down the singletrack descent, seen the tree at the other side of the plank bridge, braked, and wobbled for a moment before going off the edge onto the rocks.

Now we were watching and waiting. 911 had been called. An hour later, the EMTs and Fire Fighters would make their way through the woods with equipment to pull him out of the creek without damaging his spine. In another half an hour Justin and I would be standing next to a Police van as the ambulance departed for the hospital - two people with three bikes, both wondering, "what now?" and making dark jokes about showing up on the news in spandex. We got into the paddy wagon with the bikes and hitched a ride with two kind officers back to Justin's house, the whole time thinking about our mortality and how such a beautiful morning could have gone so wrong.

"He should have walked away from that. I've seen crashes worse than that so many times and guys have walked away."

But, he was lucky. Maybe the luckiest guy around that day, with 8 broken bones all in all; 4 ribs, his sternum, clavicle x2, and part of his T4 spine. Plus, one punctured lung. But, no spinal cord damage. He would make a full recovery.

It was only at that point, at the hospital, did I look down at myself. I was stilly dirty and bloody. I had crashed too - an epic crash over the handle bars as I had braked too hard and catupulted myself face first onto the ground, in a gruesome approximation of a belly flop on land, with serious speed behind it. I had been dazed, and tasted blood from where I bit through my lip, but it all seemed trivial in comparison to what had happened to Brandon. And, I hardly felt it until now.

One of the ER nurses handed me a stack of towels and pointed me to the bathroom to clean myself up when I asked.

My chest was skinned over my sternum and ribs where they stick out, particularly the left side. And, both of the bony prominences at the front of my hip bones were skinned and bleeding a little when I scrubbed the dirt out of them. The tops of my quads the same, with a big blue splotch visible under the skin of my legs. Arms scratched up, right ankle slashed open on the inside. But, nothing to talk about compared to Brandon.

What is amazing thinking about it now is both how lucky I am, and how amazing it is that today's ostomy appliances can withstand such a beating! Not only can an appliance stay stuck on for 3-5 days of life with hours of cycling training thrown in, but it did not get ripped off or even slightly compromised in my own full-front crash. So, thank you to both the universe for such luck, and to the folks at Coloplast and Skintac for making these things so darned durable and adhesive.

It could have been so much worse. For everyone. But, we are all pretty darned lucky after all. And, we will all ride another day. Soon.


And, even the worst days have their highlights:

- Getting into the back of a paddy wagon with three bikes, and the local news filming - probably wondering why 3 bikes and two guys were being arrested! (We weren't)

- Justin looking at my bruised quads where they had hit the handle bars on the way over and saying, "Wow, are your quads swelling or are they usually that big?"

- Watching bullfighting in the ER waiting room and saying out loud, "Now, that's a dangerous sport".

Monday, July 15, 2013

In two weeks I will ride 200+ miles in one day.

The challenge is on.

On July 27th 2013 I will ride no less than 200 miles, from New Haven to Providence Rhode Island and then back to New Haven. The goal is to maintain a moving pace of 18 mph average, although I'd be happy with 16 mph average for the last 50 miles of it. The inland route would total 103 miles each way, and the coastal route ~136 each way. It is currently undecided which combination of routes we will choose.

If it is 90+ degrees outside AND overly humid, we will postpone until August 3rd, to spare ourselves having a heat emergency.

Right now, it's just me and my friend John for the whole distance, plus a few "maybe"s and some joiners for the beginning or the end. The Brown and RISD cycling teams and some local Providence cycling folks will probably ride out to meet us, ride us into Providence for lunch, and then back out to the suburbs.

It's not a fundraiser (although, if you are feeling inspired to donate money somewhere, donate it to the UOAA or Camp Oasis). There is no structure in place or organization supporting this ride. It's just a couple of guys who want to ride till they can't ride anymore. This is a Rapha style, epic ride for the sake of doing an epic ride.

Spread the word. If you are in the area, join us for part of the ride!

the inland route. 

And, you might ask yourself why on earth I would want to ride so far in one day? Clearly, this will hurt. It will be mind numbing at points. It will be hot, and sweaty, and I will be very very tired. This (not G rated) cartoon from The Oatmeal pretty much explains it all. This is essentially the story of why I ride my bicycle so much, minus the part of the comic about hornets and Japan, and plus something about being sick with an autoimmune disease and having lots of surgery and challenging the world's (and my own) assumptions about what it is possible for me to accomplish. 

Tuesday, June 18, 2013

Setting the record straight

Even at Yale School of Medicine, sometimes we have supposed expert lecturers say things that aren't correct. Or, alternately, present important material inapropriately.

Today in one of our Human Sexuality classes on sexuality and disability/illness, our professor stated that people with an ostomy smell bad, which can be a barrier to sex, and this can potentially be addressed with cologne. He also stated that people with an ileostomy can wear a stoma cap to reduce the size of the bag.


Wait, no, not "sigh...". This type of perpetuation of negative stereotypes (smelly, undesirable) is infuriating!

A cap?
First off, the misunderstanding of who wears a stoma cap is just silly and only communicates the lack of familiarity with ostomy issues more than anything else.

Anyone with a good understanding of the logistics of an ileostomy versus a colostomy would know that in an ileostomy a stoma cap generally really won't work well because of the nature of the output, which is more continuous than a colostomy which may be managed through means like irrigation. For many people with an ileostomy, a stoma cap would probably cause more problems than it was worth by puffing up like a small balloon if used for more than a very short period of time. For intimacy and activities like swimming, many people prefer to change to a mini-bag which is larger than stoma cap but smaller than a full size bag.

Like roses...
Now onto the issue of smell. In the break between hours of the class I approached the professor about why this sort of statement only reenforced a negative stereotype which might be passed along and negatively impact patients. I also offered up that what he didn't know was that most of my classmates know that I have an ileostomy. His response was that he was not wrong, and that I am a one of a kind exception to the rule, and that this was my personal sensitivity and that I was "blowing it out of proportion" it into an issue with him that wasn't real. He then repeated multiple times that from his own experience as a doctor he has seen only people who smell bad and have had resulting problems with relationships.

Let's address the facts here and clear this whole thing up.

These days, nearly all ostomy supplies are manufactured so as to be impermeable to smells when adhered correctly. When one of the guys farts in the car after a burrito stop, it's convenient to be able to deny any responsibility because it truly couldn't have been me. You can't smell mine because they are in a contained bag! So there! ha!

Leakages are still possible, but with some help from an ostomy nurse on finding the right combination of adhesives, can be very rare to the point of not being a major concern. Even with training intensively 6-7 days a week, and racing, and ahem... having an active sex life... I only need to change my appliance 2 times a week, and haven't had a leak in about 3 years (knock on wood!!!).

If I smell bad it's not because of my ostomy. It's because I sweat a lot and sometimes am a gross dude who doesn't shower after riding my bike. Sorry, world.

Of course, there will be lots of people in the world who smell bad. Some of them have bags, most don't. Some other people just have poor hygeine. And, some people with an ostomy have issues with appliances due to skin folds, adhesive allergies, or diminished eyesight or dexterity.

As ostomates, friends and healthcare providers who may encounter people with an ostomy, it is important to differentiate between what is a fear and what is an inevitable reality.

A person with an ostomy might FEAR odors, especially if they are new to having one or have recently had a leak which has made them trust their appliance less.

A person with an ostomy does NOT smell bad and have leakages prohibitive of having sex as a part of their UNAVOIDABLE FUTURE  You can solve these problems in most cases, with an appropriate referal and education to a GOOD ostomy nurse or other community experts.

The issue with intimacy, for somebody with no unaddressed appliance issues, is FEAR, not a bad smell itself. Putting on cologne might help with feelings of being self concious, but won't be the cure to a leaky appliance. And, if your appliance isn't leaky, and you've taken a shower recently, you probably don't smell.

Perpetuating negative stereotypes doesn't help anyone. It does people with an ostomy and their providers, who might help solve the problem if they knew it wasn't to be expected(!), a disservice.

Wednesday, June 12, 2013

Spandex bike shorts! Wear them with an ostomy? Yes!!!

Twice this week, bicycle shorts choices with an ostomy has come up.

1. Can you actually wear tight clothes, even skin tight spandex with an ostomy? 
Yes, absolutely! The thing I've learned is that people really aren't paying that much attention to you. They are too hung up on their own appearance to notice a small ring on your abdomen. Most people area a little bit lumpy. And, I'm sure you've noticed some people wearing very tight clothing on the street who don't have chiseled bodies. It doesn't matter if you're thin, thick, or somewhere in between. It's just a little ring, or maybe a small bulge under your clothes or skin tight clothes. And, really, that's all it is.  Can you notice it in the last of the photos below? Probably, if you look really closely. You can definately see it in the correct lighting if I am standing upright, off the bike, and am wearing a skinsuit for time trials. Personally, I'm fine with telling people what it is if they ask, and most of the time people's responses are positive ones. Especially in the setting of competition, I think people have respect for those who have overcome challenges to get there. But, even without a competitive setting, I've stopped caring.
Try it. Wear bike shorts. Nobody is looking. And, if they are, it's your good looking bike or tight clothing, and not your ostomy.

Most people are shocked to find out that I have an ostomy. And, I've never had somebody see me in spandex and figure it out. Even teammates who are oncology nurses haven't known before I told them (or walked around with my shirt off).

2. What kind of bike shorts are best? 
There are really two types of bike shorts. One's with a waist band, and bib shorts with shoulder straps and no waist band. Personally, I swear by bib shorts because they keep everything tucked in place without any additional support garments/belts/whatnot, and don't have elastic constricting my bag anywhere. Pretty simple reasoning, yes?
At first I was afraid to wear bib shorts because I was afraid it would be too tight around the appliance itself. I started biking again after surgery wearing standard shorts and found it was ok for a short time, but after a longer or harder effort it would start to tug on my bag, or if I had any output while biking it would all collect above the elastic line and become both an unsightly bulge and uncomfortable.

Here's how it works, in photo blog format.

3. How do I buy bike shorts? 
It really comes down to a matter of preference.
The ones below are team issue shorts made by champion systems. Some of my other favorite brands for high quality shorts are Voler, Castelli, and Giordana. I recommend you trying them on at a reputable, bicycle-specific store (not a big multisport, box store like REI, City Sports, or Dick's sporting goods.) Ask the sales people about the sizing. They should feel snug enough to keep everything in place but not so tight that you can't get them on. As a point of reference, I usually wear a 28 or 30 waist jeans around my hips, and have a 25 inch natural waist. I wear a small or extra small in most european brands. In larger cut american brands (Hincape) I wear an XXS.

PS- Sorry for the fuzzy iphone photos and the split mirror!!! It's what I've got to work with!
PPS - Note in the corner, the evidence that I do religiously wear zinc sunblock, as should you! Especially if you've ever been on an immune modifying drug, which can increase your risk of cancer!

Monday, June 10, 2013

4 years of gutlessness!

I just realized that this week is my 4 year anniversary of being gutless (of course, that gets a bit fuzzy with the sheer number of surgeries involved! The final ileostomy surgery was at the beginning of July).

Four years ago this past May I let a good friend convince me to go to the ER because I looked "really awful", and I didn't come out of the hospital for more than a few days till nearly September and numerous surgeries later. At 4 years, I think I'm doing pretty darned well. It's amazing to think of how relatively short a time it's been and how much has happened since then. Life continues onwards and upwards, even if there are a few stumbles along the way.

This is what I did last week to celebrate. Track racing! Sadly, I was looking away from the camera.

Thursday, May 16, 2013

Enjoying spring in CT by bike

It's days like this that make me glad to be a cyclist! Enjoying life.

Breaking up sprint intervals by a few stops for photos of the orchards and river just outside of New Haven.

Happy riding, everyone! 
Here's looking forward to a few days off from school and spending some quality time with my bike!

Sunday, May 12, 2013

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.

Thursday, May 2, 2013

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!

Monday, April 8, 2013

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.
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 

Monday, April 1, 2013

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.

Monday, March 4, 2013

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!

Saturday, February 16, 2013

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!