What I Wish People Knew About Diabetes

Part of the joy of attending events such as a JDRF ride or a triathlon with Triabetes is being surrounded by people who really "get it" with respect to having type 1 diabetes and trying to live a full and active life.  I have also been fortunate to have many close friends and family members without diabetes who have taken time to learn and have been patient as I rambled on about my experiences managing my diabetes.  In my mind, I carry a little corner of worry--or perhaps "attention" is a better word, depending on the circumstances--about my blood sugar and insulin levels and how they are changing, and how they might be affected by anything else happening.  For example, I may be running, watching my blood sugar falling and thinking, "Hmm, can I beat this or am I going to have to eat something before I finish up in 15 minutes?"  Or maybe on a long bike ride I may see my blood sugar rising and wonder whether that half-of-a-unit will be enough or should I risk having to eat more later or getting a low blood sugar because I treated it more aggressively.  Being able to share these moments with a friend who understands, or is willing to learn how to understand, eases my worry.  Knowing that there is at least one other person nearby who understands what it might mean for me to see "42" on my meter helps me to feel so much less vulnerable.  When I was in a crash at a criterium in February, 2009, the medical staff person (thank you Katherine H!) for the race came over and said that she was a nurse and experienced with diabetes; a wave of relief passed through me.  "My blood sugar was 250 before the race and now my pump is broken! I'm on Humalog!" She knew exactly why I was worried and was able to find my meter for me and communicate my concerns to the EMTs.  This was a tremendous comfort to me during a truly frightening and painful experience.

What do I wish people knew about diabetes? Honestly, there is so much to learn and so many other diseases and medical conditions that people may need to focus on in their own lives, that I wouldn't expect anyone to become an expert on diabetes unless it were required of them or else they had a particular interest.  I would hope that people are aware of the signs & symptoms of both type 1 and type 2 diabetes, since delaying a proper diagnosis can lead to a great deal of unnecessary suffering.  Also, there is a type of diabetes called "1.5" or LADA, which presents more like type 2 but which is actually a slow-onset version of type 1 (and is often misdiagnosed).  I wish more people appreciated the dramatic effect of exercise and diet on their metabolism and worked to prevent the onset of type 2 as much as possible.  Diabetes is no joke.  Still, I think it is unhelpful to make assumptions about either type 1 or type 2 diabetes unless one has already gained some actual fact-based knowledge on the topics, and met quite a number of people who actually have type 1 or type 2 diabetes.

But if you happen to be a friend of a person with diabetes (and I will focus on type 1, since that is my area of expertise, so to speak), and want to be someone who "gets it," here are a few starting points:

1)  Type 1 diabetes does not have a cure, although there are a lot of exciting lines of research.  I am 100% uninterested in anyone claiming to have an "unknown" or "magic" cure.  Really, once it is found, I am sure it will not be a secret for long.  I will take insulin until a cure is found.  Although changing my diet and exercising will affect the way I manage diabetes, it does not cure me of it.  Type 1 diabetes is caused by an auto-immune process that seems to be triggered by something environmental.  The exact cause is unknown.  Although it is more common in kids and young adults, it can occur at any age.

2)  Insulin is a hormone made in the pancreas by the beta cells.  In type 1 diabetes, the beta cells get destroyed and the insulin must be replaced through injections (via an insulin pump, syringes, or pens).  Insulin is required 24 hours per day, even when fasting.  I take a background rate of insulin ("basal rate") to cover basic metabolic needs, and take a "bolus" (like an injection) when I eat anything with carbohydrates.  High fat and/or protein foods also require insulin over longer time period.  Food gets converted into glucose (in varying proportions) which eventually enters the bloodstream, causing a rise in the blood glucose level.  Insulin lowers the glucose concentration in the blood by facilitating transport into fat and muscle cells.  

4)  Although the normal blood glucose for someone without diabetes is typically 70-90 mg/dL and temporarily a bit higher after a meal, my blood sugar can be anywhere.  If you ask me what my "normal" blood sugar is, I might give you a blank stare.  I try to keep it above 70 and otherwise as low as possible given the situation; I guess my target is around 110.  When I am exercising I will usually keep it a bit higher, since it can fall very quickly.  I have had readings below 20 and above 600, otherwise known as "LO" and "HI" on the blood glucose meter.  It can fall and rise really fast; but sometimes it can take forever to budge.  Low blood sugar makes me feel really weak and also scared, if it is quite low.  I am still able to communicate (this is not universal) but I may speak slower and act a little dazed.  I really hate having low blood sugar.  High blood sugar can make me sleepy and/or moody and it sometimes feels like a mild stomach flu.  I get thirsty and can become dehydrated more easily.  Sometimes my arms will cramp.  Things that lower my blood glucose include: insulin, exercise, not enough food.  Things that can raise my blood glucose include: food, stress & anxiety, exercise, too little insulin.  These are not the complete lists.  On my pump, I have different basal rates for the different times of day.  I also take a certain amount of insulin in response to the amount of carbohydrates in a meal and another amount to correct for a high blood sugar.

5)  Exercise can lower or raise my blood sugar in the moment.  In the long run, the increased insulin sensitivity due to exercise makes it easier for me to alter my blood sugar and allows me to take less insulin overall.  During exercise, I am exquisitely sensitive to insulin.  For example, I may take 3 units for 45 grams of carbohydrate normally; but when exercising, I might just take 0.5 unit.  Frequently, I may not even take any insulin at all, other than my ongoing basal rate.  Stopping for too long to eat in the middle of an exercise session can make it difficult, because then I will either need to bolus for the food or will watch my blood sugar start to climb.  If I take a normal bolus, and then start exercising again, all the insulin in my body becomes supercharged and my blood sugar may come crashing down.  Then I have to eat more, which is really annoying to me, or I will have to stop, which is even more frustrating.  I could compromise and take a partial bolus and this is often what I do.  But there is a bit of uncertainty about how much to take and then all I get to think about for the next couple hours is whether my blood sugar is going to crash.  This is why I may get eager to get going again; really, I can relax!

6)  I plan my insulin and meals around my exercise.  If there is a big change in schedule, this can make it more difficult.  I may have changed my insulin dosages in anticipation of a race or workout start time.  If there is a big change, then I will need to compensate for that.  This could require me to eat 2-3 extra GUs to get through a run (boo!) or could result in a super high blood sugar for the first hour of a bike race.  I realize changes happen and try to be flexible. 

7)  Please don't ditch me if I have to stop to test my blood sugar.  I usually try to test when people are stopped for some other reason.  I don't get bothered by most things, but getting left behind on a ride because I needed 45 seconds to check my blood sugar makes me want to cry.  Fortunately this rarely happens anyway, and having a continuous glucose meter means I just have to pull it out and take a look.

8)  If you find yourself surrounded by some PWD (people with diabetes), just throw out the question, "What's the fastest way to raise a low blood sugar?" and you will keep the conversation going for at least 10 minutes.  In general, simple carbs without fat or protein absorb quickest and are best for treating low blood sugar.  How much I need to eat depends on how much insulin I have in my system, how fast I may still be dropping (i.e., how fast my blood glucose is dropping), if I am exercising or planning to exercise, if I ate something else already, etc.  I try to carry enough sugar to feed 100 hypoglycemic PWD but if a friend happens to carry a spare GU, that certainly could come in handy.  Foods that help me bring up a low blood sugar include: glucose tablets, Skittles, Smarties, juice, milk, energy gels (like GU), soda, honey (but eat carefully--I seriously choked once eating honey too fast during a low), corn syrup, etc.  Foods I wouldn't target but could bring up my blood sugar more slowly include: bread, fruit such as apples/bananas, candy with a lot of fat, granola bars, crackers, cake.  Foods that won't help include: pure protein (steak, chicken, cheese, eggs, etc.), nuts, non-starchy vegetables, lard (hey just seeing if anyone is actually reading this).

Well, I could go on but anyone reading this probably either knows this stuff already or is now completely overloaded.  Perhaps most importantly, what I would like people to know is that I and most people with diabetes are always willing to answer questions, as much as you are interested.  Personally, I don't expect people to know too much about the particulars, just as I don't know the ins and outs of most other chronic diseases.  So if a friend says, "Hey does insulin cause your blood sugar to go up or down?" I am not thinking, "What a dufus!"  I am sincerely glad to explain it because your just asking about it makes me feel more supported.  And I believe that PWD have insights gained through their unique window on their own metabolism that can be enlightening to anyone, with or without diabetes.  Finally, I believe that as the incidence of diabetes continues to increase, PWD who have observed the dramatic changes in metabolism related to insulin, exercise and diet are in a unique position to support efforts to prevent type 2 and to help people improve their management of both type 1 and type 2 diabetes.

(See other blog posts addressing this diabetes blog day topic.

I was supposed to just name 6 things but I got a little carried away. Oops.)

Triabetes documentary tonight in San Francisco

Please join us tonight at 7 PM at University of California San Francisco for the Northern California premiere of the Triabetes documentary: "The Science of Inspiration." 

Here's the info:
In 2008, 12 people with type 1 diabetes, including myself, set out to complete Ironman Wisconsin as part of a team called Triabetes. Triabetes has now grown to be the world’s largest triathlon club for people with diabetes, shattering presumed limitations and revolutionizing the way people approach diabetes management.

Come meet current Triabetes members, and join us for an evening of inspiration, education and exploration as we follow these athletes and the kids who partnered with them for their journey to the finish line and beyond.

Tickets are free; $5-10 donation welcome at the door.  There will be raffle prizes awarded at the end!

See the preview here: http://vimeo.com/1871013

Location:
513 Parnassus Avenue, San Francisco
Cole Hall (first floor of 513)
7 - 9 PM

Parking is available across from the main hospital in public lots or you can take N Judah to Arguello/Irving and take the parking elevators all the way up to Parnassus. Buses 43 and 6 will drop you off right at 513 Parnassus. Free parking is usually discoverable in the neighborhood if you are persistent.

photo courtesy of Blair Ryan

Twenty-two years

Twenty-two years ago today, I was pulled from 9th grade gym class at Highland High School and made my way to Primary Children's Hospital in Salt Lake City, where I was diagnosed with type 1 diabetes.  I started using Regular and NPH insulin and learned how to test my blood sugar on an early model One Touch meter.  It took me fifteen minutes to poke my finger the first time.  I continued on the cross country team and since then I have run twelve marathons, qualified for and run the Boston Marathon, completed four Ironman triathlons, and competed in about 30 road bike races.  I would give anything to be able to go just one mile without diabetes.  Today I am raising money for a cure for type 1 diabetes with the JDRF for all of us with type 1 diabetes and in honor of those who have been taken from us too soon.  Please donate generously if you are able; any amount is welcome.  Donations can be made at my page at http://ride.jdrf.org/rider.cfm?id=9740.

Riding Again

Earlier this year, when in Wisconsin for the funeral of Jesse Alswager, I decided that I would like to join Jesse's mom, Michelle, as she and a number of friends chose to honor him by riding at the Juvenile Diabetes Research Foundation's Ride to Cure Diabetes in Death Valley, California, on October 16, 2010.  Since then I have become aware of similar stories of great loss, including the deaths of several young people close in age to Jesse.  I have tried to live with a philosophy that diabetes is more of an inconvenience than a death sentence; still, these heart-wrenching events have touched me and reminded me that insulin and all of our wonderful technological advances still allow too many to slip away.  It is still hard for me to reconcile these events, knowing that I share the same condition.

After my accident at the velodrome in May, I wasn't sure what the next few months would hold, and whether I would be able to continue with my plans for Death Valley.  The collarbone surgery was successful, but I would need to take blood thinners (warfarin) for up to 6 months to help treat three clots that had formed in my lungs.  The scare tactics from my physicians were pretty effective and I felt discouraged that I would not be riding for the rest of 2010.  Slowly, though, I was connected with other athletes on warfarin and realized that some riding would be okay.  A month after the crash, I was elated to be out riding again.  I chose the safest routes I knew, and backed off a little on the descents and when approaching intersections.  I spent more time indoors on the rollers, and also picked up swimming and running again.  Road racing and other large group rides were out of the question.  But, fortunately, my time on the warfarin was shortened to just three months, and I am happy to now be riding warfarin-free as of this past weekend.  (This experience has given me an appreciation for those who must remain on warfarin for life--a topic for another post.)

I decided to continue with my plans to ride in memory of Jesse, Trent, and all the other people whose lives have been shortened by this disease.  I will also ride in support of their families.  Additionally, I will ride to honor those who currently face a daily struggle due to serious complications of diabetes.  I am fortunate and grateful to be in good health and to be able to pursue my dreams.  Finding a cure is the best way to ensure that all people with type 1 diabetes can continue on that same path.

I would be touched by your donation.  If you are able to donate, please go to my JDRF page here.  Any amount is helpful and welcome, and you can donate anonymously if you would like.

Velodrome Crash: the Long Story

I had been interested in racing the track for a while, but didn't have the confidence to try it out.  After a clinic last December, another 2-day clinic about a month ago, and then a great workout session the night before, I felt comfortable racing at the Hellyer Velodrome's “Get Ready for Summer” races on Saturday, May 29, 2010.  We would have our own women's category 4 field, rather than race with the guys.  The first race was a tempo race, with points given each lap for the 12 laps.  I think I came in first or maybe second for a couple laps, and I ended up placing third overall.  Our next race was a 12-lap scratch race, which is like a criterium in that the winner is determined by who finishes the whole thing first.

I'm #519 in red. photo by Steve Woo

Throughout the race, I felt like people were squeezing the group somewhat down track (i.e., towards the inside); for me to move around I would go up and around and advance.  I realized partway through that I did not feel comfortable advancing my position, and settled somewhere towards the back, looking for a good opportunity.  With three laps to go, I was in the sprinter's lane (the innermost lane on the track) behind a line of riders.  We were approaching turn three.  I have a few seconds of memory lapse here but the next thing I recall is riding on the apron pavement towards the warmup circle (in the infield area) and seeing someone down immediately in front of me.  I had nowhere to go.  It was a déjà vu moment from last year as I flew over my handlebars and hit the ground.  Stars flashed and I came to a stop, sitting up.  I assessed the situation and immediately felt relief--no great pain.  Maybe I wasn't that hurt.  But moving a little, I was certain my right collarbone was broken.  I felt angry, mostly, and was pretty quiet.  I noticed some blood trickling down my face and people were coming over.  It was very sunny, bright and hot sitting there on the black asphalt.

People began helping me while we waited for the ambulance.  The initial numbing shock started to wear off and I could feel the pain increasing, mostly in my shoulder.  Since I couldn't lie down, and I had hit my head, a friend stabilized my neck while I sat.  It was quite a while, so thank you, Evan. I felt bleeding in my pelvic area and thought for sure there must be blood gushing.  Once the paramedics arrived, I heard the words "dislocated" and "deformed" with regard to my shoulder, and was not amused.  The thought of someone pulling my arm to put it back in place was horrifying.  They were good about not forcing a certain position and got me on the spine board (yeah, here we go again) and into the ambulance.  I asked for morphine since last year I didn't get pain medication quickly enough.  The paramedic continued asking me questions and I felt sleepy but he didn't want me sleeping, I guess.  I felt like I was still bleeding in my pelvic area and mentioned it again.  But the bleeding was internal; the paramedic put an ice pack there and also one on my shoulder, which brought some relief.  I was most impressed that he was able to start an IV while the ambulance was moving without jabbing me all over.

I arrived at the Regional Medical Center San Jose, the closest trauma center, and things got busy.  I was very happy to see two good friends, Rita and Amy, waiting there for me.  The ER staff did some Xrays and other exams and cut off my favorite bib shorts and team jersey.  It wasn't until we were there for some time that they noticed a puncture wound on my shoulder, and soon discovered that the clavicle fracture was open, meaning that it had broken through the skin.  This has been my nightmare and the ultimate in bad injuries! Ahhh!  The surgeon came in and numbed it, thinking he could perhaps set it in the ER.  I felt and heard him tapping on the bone (ugh!) but at least it didn't hurt.  It became clear that surgery would be required.  Later I learned that the clavicle had fractured, completely shredding the ligaments attached to the scapula below, and piercing through the trapezius muscle and out through the skin.  Somehow it had also retracted back in a bit; so there wasn’t a huge piece of bone sticking out, at least.

 Waiting for the results to come in, I was still 

unaware of the compound fracture.

I was scheduled for surgery as soon as possible, the next morning.  They admitted me from the ER and put me on morphine to help with the pain.  I was nervous about the surgery but was comforted by the company of good friends.  They wheeled me to the OR where the surgeon explained his plan to repair the torn ligaments and to stabilize the fracture using a surgical device called a "tight rope."  Also, the anesthesiologist and I discussed diabetes management; he was interested in my Dexcom CGM, which he kept with him during the surgery. The next thing I remember was waking up with severe pain in my shoulder.  I was in a daze the rest of the day and would briefly see my friend Rita every now and then when I woke up.  Thanks for staying with me all day.  After some physical therapy to get me moving a little the next day, Monday, I was ready to go home.  I wanted to get back to San Francisco; if I needed further medical care, I preferred to go to my regular doctor.  Also, it was so hot in that hospital that I was constantly sweating and uncomfortable.  My friend June from my bike team stopped by after the Memorial Day Crit and graciously offered to wait for me to be discharged and to drive me home.  I was still a bit dizzy and unstable walking around but the medical staff seemed to feel it was okay to leave.  I noticed some pain in my right calf that I hadn't felt before.

 Before surgery

 After surgery: the two metal "buttons" connect the clavicle and 
corocoid process via "rope" and constitute the "tight rope."

I was glad to be home and was comforted by my having my roommate Radhika there.  Sleeping was still difficult and I woke up that night around 1:30 AM, a bit uncomfortable, but fell asleep again.  I had some weird dreams including one where I was outside in a storm at my parents' home in Utah, watching lightning strike uncomfortably close.  I thought that I might get struck and then a thick bolt, covered with burning embers, struck my parents' house, causing it to burst into flames.  Then the lightning came my way, striking me and throwing me down into a dark pit, where I was burned up.  Lovely!  I'm so lucky! I woke up at that point to severe pain in my right side.  It was around 4:30 AM and I was disappointed I hadn't slept more.  I thought I must have jammed my arm into my side or something--that the pain was just from sleeping in a bad position.  After standing up and walking around a bit, the pain started to subside.  Still, when I would try to lie down again, the pain would return.  Last year, the rib and L2 fracture diagnoses took about a week to come in, so I assumed I had just broken a rib that was somehow missed on Xray.  Or maybe somehow my side was slightly injured and my sleeping position further injured it.  I did sleep again for a bit and after that, I couldn't find any comfortable position.  I noticed that the pain in my side was completely eclipsing my collarbone pain.

A good cycling friend (and nurse!), Cheryl, came that morning to help me and stayed for quite some time; I was so grateful for her company and help.  I was feeling anxious about being home alone with this pain and was still somewhat lightheaded and unstable at times.  I was so happy to finally be able to shower and was put at ease to have her there. Throughout the day, the pain would get worse and then subside again.  My doctor felt like the trauma center most likely did not miss a rib fracture and helped me to get a new prescription for pain medication.  In the afternoon, a case worker from my health plan called; she was in the process of transferring my medical records from the trauma center, including my radiology images.  She asked how I was doing and I told her about the pain, that it was a "10 out of 10" when I tried to breathe deeply.  Basically, I could not breathe normally at all. It felt just like a broken rib. She recommended that if it did not improve with the vicodin, that I head to the ER.  I took another vicodin and the pain did improve somewhat.  But by about 4 PM when my friend Colleen arrived to visit, I felt like it was time to go in.  I was mostly worried that my shallow breathing would cause my blood oxygen levels to drop and that that might put any brain injury (if I had one) at greater risk.  I was still pretty sure I had a rib fracture--the pain felt very sharp and was consistent with where I fell.

Colleen braved the insanely steep ER driveway in her stick shift car and dropped me off.  I was becoming somewhat hysterical because I felt like something was really wrong but I hadn't been able to find an answer.  I had tried to get in touch with someone--anyone--to review my Xrays from the trauma center.  I knew I would not be able to sleep with this pain.  And I was becoming short of breath and very uncomfortable breathing.  I was seen very quickly (for an ER) and they started doing tests.  Let me tell you--if you have to be in an ER, Colleen is someone you want with you.  She had an uncanny way of making me laugh and relax and I was grateful for her company.  They did the chest Xrays and didn't find any broken ribs, and also started some blood work.  At the last moment, the attending doctor said he would run the D-dimer test to check for blood clots in my lungs.  He said that, due to my recent trauma and surgery, the test would likely come back as elevated, and that they would need to do a CT angiogram of my chest in that case.  He seemed to feel that it was unlikely that I would have clots, but that they would check it out anyway.

Well, the D-dimer test came back elevated. I asked, "How elevated is it?" and he responded that it is either elevated or not.  Oh.  I was hoping it would be like having a blood sugar of 150--a little high but not an emergency.  I was prepped for yet another CT exam and had the nasty, hot contrast injected as I held my breath.  The tech asked if I worked in radiology--I guess because I held still so well?  This is something I instruct people to do all the time so I guess I take it seriously when someone asks me to do it!  Back in the room, I waited with Colleen for the results.  I said, "I doubt it will show anything," and was not overly worried.  I didn't really know how serious blood clots were but they sounded bad.  After some time, a different doctor came to tell me the results.  She seemed serious when she said I had three small clots in my lungs.  I don't remember what else she told me but came to understand over the next hour that they would put me on heparin right away and that I would be admitted for treatment.  The nurse was having a difficult time getting the IV tubing set up and I was getting increasingly agitated as the doctor tried to explain again what was going on.  I asked if I would be okay and the only answer I got was, "It's good you came in."  Ugh.  They finally got the IV sorted out and injected a huge bolus of heparin.  My confidence was sort of shot with that particular nurse and I just hoped she was giving me the right amount.  Colleen was there and after the chaos calmed down, I started to relax a little.  Over the next hour or two, I could feel the pain lessening in my side with the heparin starting to work.  The IV heparin drip would continue for another day or so.

 I think the blood clot is that dark spot in the left wedge-like vessel. Get that?

I was moved to the telemonitoring floor where they would be watching my EKG constantly at the nursing station (in case I suddenly keeled over, I guess).  I was hooked up to the IV, the EKG leads/box, my insulin pump and had my Dexcom CGM handy.  Oh, and of course I had to keep my iPhone by my side.  It was impossible to move anywhere without dropping something.  I still can't find the clip for my pump so I have been carrying it everywhere.  I tried to see how low I could get my heart rate and was sort of disappointed it wouldn't go below 45.  I think I can get it to 42 when I am really rested.  I was hoping a 45 would set off some bradycardia alarm but alas, they were not concerned.  They frequently checked my blood pressure and temperature and regularly drew blood for lab tests.  Unfortunately, my veins were not happy and they had about a 30% success rate of finding one.  Most of the bruises have just disappeared.  They gave me pain medication when I asked, and I should have asked more frequently.   I was quickly breaking out in a rash all over due to some allergy and they decided it was probably from the morphine and/or vicodin.  I was not happy with the way vicodin was making my head feel, anyway, so we stopped the narcotics around noon on Wednesday.  Later, my doctor determined that the allergy was due to the IV cephalexin (antibiotic) I had post-op.

All throughout the day Wednesday, I had a stream of visitors who really kept my spirits up (and kept me distracted from worrying).  Those visits, flowers, calls and other help really meant so much to me.  Thank you, thank you.

I had an ultrasound exam to check for blood clots in my legs (negative) and a brain CT to check for possible brain injury, since a blood thinner could cause significant complications in that case.  I continued to feel sluggish in thinking and speaking, and since I work with people with brain disease and trauma, I know the signs all too well.  I was so worried.  At one point, the nurse said something that made me really scared and I called my mom and asked her to bump up her flight to that evening, instead of the next morning.  I think the comment, "I've had a patient die here from this," was not helpful.  I guess I wanted to know how serious it was; I think I would do better with statistics than a horror story, though.  After that, the doctor's suggestion that my prognosis was good didn't really stick well.

Thursday morning, I received the news that my brain CT was clear. I was feeling a little more clear-headed and was greatly relieved by these results.  The nurses had started me on a twice daily regimen of Lovenox shots on Wednesday, as well as coumadin.  The coumadin (i.e., warfarin) is a drug that interferes with blood clotting, and is the drug I will be taking for six months while the clots dissolve.  It takes a while to build up, so in the meantime, they wanted me on Lovenox as a backup.  Lovenox is a form of heparin that also works to block clotting.  The needles are huge and leave bruises that don't want to go away.  Since I was comfortable giving myself injections, I was sent home Thursday.  Thank you to Alissa for helping my mom with the flowers and for taking me home.

 Flowers from the hospital stays.

My INR, a measure of clotting time, was 1.5 when I left the hospital; they want me to be at 2-3 for the duration of my treatment.  I continued taking the Lovenox shots until the next Monday.  Since then, my INR levels have been 2.7, 2.3, 1.7, 1.4 and then 2.6.  I will continue going in for blood work a couple times a week until things stabilize better.  I have learned that the INR is affected by foods, exercise, sickness, stress, etc., which sure sounds like another fun drug that I get to take all the time (i.e., insulin).  But fortunately, there is a clinic with pharmacists who read my results and call me, telling me how much to take for the next few days.  I am looking forward to going in for blood work less often, since I'm getting weary of being poked in my arms.

As of now, the pain is gone except for my back and shoulder and occasional headaches.  The clavicle is healing well and I can already drive.  The road rash has mostly healed.  If it weren't for the blood clots, I could imagine being out on the road again in another week.  I am still easily fatigued, though, and don't want to ride until I am 100% confident of my upper body stability.  Although racing is completely out of the question, I have been told it is okay to ride my bike while taking coumadin, as long as I am extra careful.  But since I am always careful, I'm not sure what this will mean for me.  I was glad to connect with a few other athletes who have had blood clots and continued training to some degree while on coumadin.  Compared to last year, I am physically less injured.  But the clots present a different challenge that from here on out, seems more mental.  It has been hard.

I am so grateful to the many friends and family who stepped in to help me out, and for your continued support.  It would have been impossibly difficult without you.  Thank you.

Relaxing outside at Crissy Field.

Here are some additional pictures.  My mom tells me I should warn you that they could make some people queasy.  But I don't think they are so horrible.

Race Report: 2010 Kern County Stage Race

I had meant to post this earlier.  Here it is, although it seems long ago now.  I originally wrote this up for my team back in May and have left it pretty much the same.

Race: Kern County Stage Race (Bakersfield area, CA)
Date: May 14-16, 2010
Category raced: 4
Weather: sunny, some wind, warm to hot
Number of starters: 22
Early Birds present: racing: Deanna, Michal, Anne; supporting: team director Laurel Green
Other teams present: Dolce Vita, Tibco II, Los Ranchos, Metromint, Velo Allegro, Los Gatos, MetalMtn, Lenovo, DudeGirl
Your goal for the race: Do my best to place high in the GC (general classification or overall finishing placement).

Short story:
We raced 4 races in 3 days and took 2 ice baths.  The races went: good, good, bad, great!

Long story:
Stage 1: Bena Individual Time Trial (ITT), May 14, 2010, 9 AM, warm to hot

We lived up to our Early Bird name by arriving before Velo Promo had even set up the tent, and were perhaps the second group there.  The parking area was next to the train tracks and also the road to the local dump, so there was a pretty steady flow of trains and trucks.  I had pre-ridden the 10-mile (10.2 mi according to my computer) course the day before a few times, and noted some pretty strong headwinds on the return leg.  The course starts out flat, then has a pretty steep and short descent, followed by a barely perceptible rise for a few miles.  Towards the turnaround, there is a mild climb for a couple minutes, which levels out as the road turns right.  I had borrowed a Zipp tubular front wheel and worked out my paranoia about getting a flat the day before.  I used my time trial bike and aero helmet.  I warmed up for about 40 minutes on the trainer and then rode some on the road to get a feel for the wind, which seemed similar to, although not as strong as the day before.  We started every 30 seconds in alphabetical order (the same order as our bib numbers).  I went off at 9:21:00 behind another category 4 woman; there were 2 gaps ahead of her from no-shows.  I would use the riders ahead of me as targets.  My goal was to pass but not be passed by anyone.  I worked pretty hard on the way out and tried to go harder on the way back.  I was able to pass the rider ahead of me after about 2.5 miles and got close but did not pass a group of two further ahead.  I could hear someone behind me on the hill but was able to pull away on the flat before the finish.  I finished in a time of 29:01 and came in 6th.  I felt that I could have been more consistent in my effort and that I wasted some time by veering around the road a bit, trying to find a smoother path.

Time trial staging area.  A train full of cars passed by right before this one.

After the TT, we found the local Trader Joe's (HOORAY for that) and then relaxed for the rest of the day, aside from our stage race ritual: the ice bath.  I apologize to the other hotel visitors who tried to get ice after we were done...

Stage 2: Walker Basin Road Race (~30 mi), May 15, 2010, 9 AM, warm, some winds

Again we scored prime parking spots (next to the graveyard of course) by our early arrival after winding through some narrow canyon roads.  It was fairly cool when we arrived and I contemplated putting on knee and arm warmers and maybe a jacket; but after warming up and by the race start, it was a jersey-only kind of race.  The finish was on a climb similar to Snelling Road Race (as I recall) and we pre-rode that a few times.  We would do 3 laps with time points possible for each lap for the first three across the line, and one final, 4th lap with more points awarded for the top 3 finishers.  The course started on a mild downhill over some rough roads (but not "Madera rough"), and then turned right onto some rollers, straight into a pretty decent headwind.  It then turned right and looped back through some mild turns to the start/finish at the top of a hill.  Centerline rule was in effect (which means all racers must stay to the right of the yellow line).  Before the right turn up the finishing hill, there is a straight-away, then a left turn and brief descent.  Laurel had pointed out a road sign on the left that might be a good place to start the sprint.  The hill was longer than one might guess.

Walker Basin area. No, the race was not on the dirt road. Photo courtesy of Jill Eyres. 

We started off and made our way through the first loop.  The pack was staying together although there were surges now and then.  On the outbound long stretch, the pack really slowed and often, no one would pull through to the front.  There was a strong headwind here.  I went out as did Deanna and also riders from Tibco II, Metromint and Dolce Vita (and probably others that I missed).  But once someone started pulling, there were not many willing to take the reigns it seemed.  After taking a turn pulling, my approach was to just keep slowing until it was semi-ridiculous and someone would eventually pull through.  I felt comfortable in the pack, moving around.  I wanted to be near the front for the first lap while we got used to the course, and also wanted to stay close to the front in order to try for some points and test a finish strategy.  We made our way around and were starting on the short descent and I decided to just go for it to get ahead at that point.  Well, I was ahead at the beginning of the climb but you know how this story ends... I was passed by two then more people right before the finish line. Dang! There was a gal from Metalmtn who stayed back and then just powered up that hill like she did hill sprints in her sleep.  Anyway, I decided that the effort was probably not worth the few seconds I would gain, and decided to try and conserve a bit more, working for a better finish for this race and saving energy for the afternoon.

The pack stayed together and I tried to work up toward the front on the last straightaway stretch.  People were jockeying for good spots and I was probably in the front third but not as far up as I would have liked.  We got to the hill and I was jamming it, feeling pretty good, but needed to shift to my small chain ring.  I tried and tried but it was stuck and the hill was getting steeper then BAM! it dropped and it felt like my chain had come off.  But it hadn't.  Some people passed me and I was mad but I got it going and worked to keep ahead of the gal beside me.  She had contested the first hill points and I had passed her then.  Everyone finishing with the pack was given the same time, which was A-OK with me.

Michal, Deanna and I warmed down and then jetted out of there pretty quickly to get to the Havilah Climb race site.  We had about 4 hours to recover before the next race.  We found some prime parking in the shade and started refueling and resting for stage 3.  I was sort of guessing on how to manage my blood sugar since I had never done two longer (longer than 1 hour) races back to back like this.  Before I got on the course, my blood sugar was a little on the low side; I was hoping I didn't have too much insulin buzzing around.  I ate a chocolate GU and headed to the start.

Pinning my number while resting up for stage 3. Photo courtesy of Jill Eyres.

Stage 3: Havilah Hill Climb (~11 mi), May 15, 2010, 3 PM, hot in the sun, cooler at the top

We staged the race on the dirt road at the entryway to the ranch where we had been resting.  No one seemed able to tell us exactly how many miles we had to go. 17? 13? 15? No one seemed to know, although we were pretty sure we would have 4 miles before we got to the base of the main climb.  We started on a gradual climb--someone had said it was a neutral roll out--with Deanna setting a manageable pace.  Because of this, the pack stayed together for about 3.5 miles on what was actually a pretty steady climb (as I noticed more on the return trip).  Some people eventually got impatient and the pace took off.  We turned the corner and started the real climb.  I stayed with the main pack for a couple turns but then decided to focus on holding my own pace.  I lacked some zing in my legs and so ate a bit.  I stayed with a couple riders for a couple miles and then felt myself fading.  I ate some more but just felt crappy.  I wondered if my blood sugar was low but thought it might also be high.  I should have checked it but I didn't want to stop.  I think I ate some more but with about 3 miles to go I felt really horrible.  Michal passed me, motoring up and looking strong.  I was happy to see her having a good race.  Our good friend Julie Nevitt (category 3, racing masters) passed me around 1 or 2 miles to go and asked how I was.  I knew from my response that my blood sugar was low, since I could just barely mumble out, "Okay."  I was so happy to see Laurel around the last corner and finally made it to the top.  I finally pulled out my Dexcom and saw "45" and that it had been like that for the past 30-40 minutes.  Ugh, no wonder.  I think one reason I didn't check coming up is that when I see that, it totally deflates any remaining motivation since I start to get scared.  On the other hand, my doctor would probably pull me out if he saw that.  I should have stopped to check.  Michal took care of me at the top and helped me fuel up on watermelon and I recovered okay.  I was glad to see Deanna finish and we took some time to relax at the top a bit.  The total distance was 11 miles or so, I believe, with about 7 miles of serious climbing.  I was disappointed that I hadn't been able to give it my all, and felt like perhaps the race was over for me, in terms of reaching my goal to place well in the GC.  At least there was some great practice descending for 7 miles on twisty, gravelly roads!  I pounded out my frustration on the final 4-mile, fast descent back to our cars.

Trying to put on a smiley face after a frustrating race.

We all more or less willingly took an ice bath that night, knowing we had one big race to go.  While I was reflecting that evening, I decided that I should just try and forget about whatever time I had lost.  Who knew what would happen?

Stage 4: Iron Hill Road Race (~46 mi), May 16, 2010, 8:45 AM

I had taken a look at a course map from mapmyride.com and from what I could tell, we started on a longer descent.  Because of this, I really wanted to be in the front.  We started about 15 min late and people were huddling under the shade.  It was hot.  Soon enough we were off and I was on the front down the first hill.  Surprisingly, to me, though, it was more rolling the first several miles; I stayed in the front trying to set a good pace, expecting a longer descent at the top of each roller.  I felt like I was working pretty hard to keep the pace up as we climbed each roller.  Finally I moved back although I tried to stay close to the front.  We rode over the cattle guard (that could "kill you" if you rode over the middle according to the race official) and could see that the real descent was imminent.  Jill from Tibco II went to the front and set the pace down the hill.  I had not been quite at the front and was about 10 riders back, with a little separation and taking the inside line.  I came around a corner and saw a cloud of dirt off the side of the road, and then another rider down in the middle of the lane.  Oh no.  "Don't stop don't stop" was what went through my mind as my urge to stop and help kicked in.  (What I realized later is that in the moment, I was not thinking at all of anyone behind me, but only the rider who was down in front.  Thus it was crucial that I remembered and followed the "don't stop" rule that had been drilled into us by the mentors.  It made me feel totally inhuman at the moment but that was because there was not time to process the danger to those behind me as well.  Once I passed I remembered that there was a follow car behind us and that they would be given assistance.)  I slowed to avoid the rider and water bottles but was able to navigate around since I had taken the inside line.  I moved quickly to catch the group ahead and we finished the descent in silence.  Once it leveled off, everyone started talking about the crash.  One gal admitted to taking a line too wide and brushing the rider who came around her to the outside and who went down after the encounter.  The conversation continued, focused on the crash.  It was getting a bit negative and icky for me so after a few minutes of this I felt like it was time to move on and get things going.  Talking about the crash was not helping us to have a safer race at this point.  Jill from Tibco II, Christine from Dolce Vita and I set up a paceline; I wanted to take advantage of our break, which I felt had not been caused by the crash since I was behind it when it happened.  Still I sort of wondered if doing so at that time was a negative thing to do.  We had been riding comfortably for about 5 minutes, though, and still had a break and so it was time to get going. 

It took about 10 minutes to get things moving more smoothly in our rotating paceline.  One gal would pull off but not drift back and then the whole line would stall.  After this happened a few times, I rode up to her and just asked if she wanted to participate in a paceline. "Oh! Okay!" We increased the pace on this flatter section and our group of 8 continued until the next longer descent, where we dropped one rider.  I tried to hold up the group a little, but it didn't really work.  The momentum was moving fast and I didn't want to get dropped, too, so I picked it up again.  I had seen a really huge-looking hill on the profile and I kept expecting it at any moment.  It was when we started on the last big descent of the first loop that I realized we had already gone over the hills and that this course had a lot more flat and descending sections that I had thought.  Being in our paceline really helped make the climbs easier, since they weren't so steep that it became a truly individual effort.

Photo from the course by Jill Eyres.

Everyone chatted about the descent on the second loop and that we would all take it single file.  I wanted to be in the front, since I felt like I would naturally descend faster and wanted to keep it a comfortable but fast speed.  We all made it down safely and moved through the second lap.  I was a lot more conscientious about drinking water and eating every 40 min or so, since I knew it was hot out.  I was able to check my continuous glucose meter, and could see that I was in an okay zone.  What a huge relief.  We made it to the feed zone and I was so excited to see Laurel.  "Laurel, Laurel, I'm in the break! I'm in the break!" was what I was thinking but instead I yelled out "My bike computer is in the dirt!" since it had fallen off on the short dirt section right before.  Thank goodness Laurel picked it up! It would have been a super long and annoying trek out there otherwise, on top of a super long drive back to San Francisco.  The second time up the longer hill was tiring and felt never-ending; we could hear some music playing in the follow car behind us and someone asked them to turn it up.  So momentarily we were treated to some 90s rock music?  I can't recall the name but it I enjoyed the mini-party.  I had no computer and had no idea if we had 5 or 10 miles to go, so was so happy when he called out, "4 miles to go!" Hallelujah! Finally, we hit the descent, which had a lot of cornering but was not too technical, and rolled in close to Woody.  I knew the finish was a long climb and thought I would get dropped.  But then, in some effort at positive self-talk, I thought, "Hey Anne, you stayed with this group the whole time.  You belong!"  But I got dropped anyway (ugh!) and didn't have the energy to really push it harder.  I think there was one gal I could have beaten but knew from riding almost two laps with everyone that we had some super strong climbers in the group.  I also knew I wouldn't beat any of them for the GC, since the next time closest to me coming into this race was about 3 minutes faster.  (Thank goodness I had looked at the results beforehand.)  But I didn't want to slack too much because I had no idea how close people were coming from behind.  I just pushed through the interminable last 1 km and finally, finally reached the finish.  Lina from Metromint saved me by giving me a full bottle of chilled water after the finish.  My legs were ready to start a cramp fest.

Coming into this stage, I was about 11 minutes back; I noted that no one else seemed to pull in for about that time, or a little more.  Everyone in the break was ahead of me in the GC so my big hope was that we put enough time on the rest of the field for me to move up to 7th place.  And when it was all said and done, I finished with about a 1-min gap faster than 8th place and so was very happy to finish 7th in the GC.

I think stage races are my favorite road events, since the multi-day strategy adds a fun twist.  Also, with the various types of races, Kern balanced out peoples' strengths and weaknesses.  This particular event had a very friendly atmosphere and I got to know the other women pretty well by the end.  Of course it also provides a great opportunity to get to know each other on the team.  Also, Bob Leibold really makes the award ceremony special.  I would highly recommend this for everyone next year!  It takes 100 women for them to break even financially.  He currently puts this event on at a financial loss--it would be awesome to be able to support someone who is doing so much for women's racing in Nor Cal.

Early Birds Deanna, Michal, myself and team director Laurel (back) relaxing after a tough 3 days.

More photos from Jill can be seen here and the rest of my iPhone photos can be seen here.

The Short Story

Memorial Day weekend, I was caught up in a crash that occurred directly in front of me while racing at the Hellyer Velodrome.  The most significant injury was an open fracture of my clavicle, which was surgically repaired the next day.  The following day, Monday, I was discharged and returned to San Francisco.  Early Tuesday morning, I felt severe pain in my right side, lower rib cage area.  I thought it was an undiagnosed rib fracture perhaps, but wasn't sure. The pain would subside and then return.  It made breathing difficult although I was not short of breath. I was worried I had experienced some head trauma and that I might not be getting enough O2 to my brain.  Late afternoon, I checked into the ER, where they determined I had 3 small blood clots in my lungs.  I was admitted to the hospital immediately and started on IV heparin to help dissolve the clots.  They would never really tell me I would make it through the whole thing so it was pretty traumatic.  I stayed in the hospital for 2 more days while they started adjusting my INR, which is the measure of how much the blood is clotting.  They want mine between 2 and 3.  I am taking a heparin injection (Lovenox) twice a day and warfarin (Coumadin aka rat poison) once a day to bring my levels up.  On Thursday when I was discharged, I was at 1.5.  While on warfarin, I am at risk for severe bleeding if I experience any trauma, so bike racing is obviously out.  I think cycling is out in general, since even a slow-moving fall could result in serious injury.  Also, "strenuous" exercise is out according to my doctor--such as exercise that might put a lot of strain on the muscles. (!!)  I am finding it really hard to get any medical advice on what that means, exactly, since I don't exactly fit the typical profile for people on blood thinners.  My doctor said most of his patients are elderly and that he doesn't have anyone in their 30s or 40s.  I don't think he can really understand my life.  I feel like I have been given a 6 month sentence and that I am now this fragile person--"Handle with care."  I think my body and mind were primed from the trauma last year, and it has been hard.  It is devastating to me because I had worked really hard to recover physically and mentally from last year, and was just at the point where everything was coming together.  Now, I find myself at the beginning again.  But this time, I don't know where I am heading.

I should add, on a more positive note, that I have gotten through this completely from the support of friends and family.  Thank you for your visits, calls, emails, flowers and other gifts.  I am very grateful.  Also, the clots seem to be dissolving so the long term prognosis is good.

Race Report: Wente Vineyard Road Race

Race: Wente Vineyards Road Race
Location: Livermore, CA
Date: April 24, 2010, 12:15 PM
Weather: Sunny, moderate winds, hot--sunburn weather!
Field Size: 50
Category Raced: 4
Personal goal: Start at the front and stay there, be ahead at the start of the hill, test my climbing, work it on the descents/flats, test my pack comfort level! Race!

I was looking forward to this race as a test of both my fitness and my pack riding comfort level.  The group rides I've been going on have been ridiculously hard at times and I figured I could at least put a
similar effort into this race.  They have also really helped my comfort level riding fast in a group.  I tried to view this race as more or less like another group ride.  I felt relaxed and at ease before the race.  We arrived with plenty of time to get ready and I had a good warm-up on my trainer.

With the big field and the early climb, I knew I wanted to be on the front at the start, so I made an effort to position myself well. The promenade to the first turn was mellow and I enjoyed riding next to one of my teammates, Stephanie.  We were just one or two rows back and riding together and I ended up being surrounded a little.  She asked if I was okay and I realized I was totally comfortable.  Cool.  Pretty soon we hit the hill and I just tried to work it as much as I could.  I fell back some as the group started to splinter but was holding some ground.  We hit the feed zone while still climbing, and I looked for Laurel, our team director.  Yeah!  There she was.  There was a short downhill section after the feed zone and finish line, which was very welcome.  I saw my teammate Yuko ahead and also Alissa, who cheered me on to go go go.  We hit the second part of the hill and I just kept it going at a steady pace.  I held back a little because I just didn't want to burn it all up on the first lap. Well, I guess I should say, I was going very hard but not trying to sprint up the hill.  People were sort of scattered at the top and I finally caught another gal.  We worked together and then saw Yuko.  We were starting to descend quickly so I yelled loudly for her to get going and hop on!  We picked up a few others here and there and had a group of around 5 or 6 through the descent.  I was really happy with the descent on this course--it was fast and not too technical, other than the couple of sharp turns that were marshaled.  (Hello hay bales!) I pulled down the descent until the left turn at the bottom, and then we started rotating a bit.  Another gal in our group pulled through the next descent and I was happy to follow in the draft!

We hit the flats and a gal in our group organized us into a rotating paceline.  We were closing in on the chase group and worked in the wind, finally catching them.  People started to relax a bit before we caught them, though, and I had this memory from group rides of being that close but still getting dropped.  I said, "We're not there yet!" and we had to work a little after the next turn to get fully attached.  Well, I did, anyway. We went up a short climb there and the draft was pretty awesome. Descending on the other side, I felt comfortable riding in the mix and moved around our group--I think there were maybe 12-15 of us at this point?  Anyway, I pulled a bit but also rode in the pack and felt totally comfortable doing this.  A lot of times in the past when riding in a pack, I have this little voice that is expecting disaster to strike.  But it was gone. I just felt like I would on a normal ride.  I think being more confident with my own riding has helped considerably because then I am able to focus better on the situation around me.  Also I have gotten more accustomed to having to having to brake ever so slightly when descending in a pack to control my speed.  This is something that has unnerved me in the past.

We hit the climb the second time and I more or less stayed with people but was also thinking, "Hey I pulled for y'all, do you have to hammer it up the hill?" But oh well it is a race and all's fair in love and war and bike racing?  Hmmm... Anyway I dropped back a bit and was definitely off the back at the beginning of the descent.  I had the group pretty close in my sights and advanced closer down the descent.  At that left turn at the bottom, I was pretty close but again knew I was not safe yet.  I thought, "It's now or never, Anne, get moving!" and just worked as hard as I could to get back in.  We went through the next descent and flats again. Briefly I thought about organizing Yuko and a couple other women who were also at the front a lot into a break if they were up for it.  We had a group of about 8-10 riders and I was feeling pretty dehydrated and a little crampy and knew I didn't have a lot to give on the final climb to the finish.  So if we took everyone to the climb then I knew I would lose a lot of places; I was a little afraid I would completely blow up if I put in a hard effort at that point.  I was able to control the pace by staying at the front a bit there.  No one wanted to pull so I just kept it easy for myself.  I tried to stay ahead of Yuko, hoping she could rest a bit before the finish.  We finally hit it and I felt like my goals had been met at that point.  I just didn't want anyone from behind our chase group to pass me so I worked it up that last hill with a little caution since my calves were cramping.

I was really happy with this race because it was the first race I have done since before my crash where I was really racing with my mind fully engaged.  Prior, I have felt like I was either in observation mode or just riding with something nagging at me to stay out.  It was super hard and there was a point about 3/4 of the way through where I thought, "Really?  Does this have to continue?"  But I felt comfortable in the group and was really happy that we were able to catch the chase group and that I stayed with them more or less until the final climb.  I was so happy to find Yuko and to work with her.  I knew she would do awesome on that final climb!  I probably should be more patient when the pace slows in the pack and not take the front so readily; on the other hand, I didn't want our group to be caught from behind.  When another gal said, "You really love to pull!" I did not take this as a compliment!  It's true though!  Also I definitely need to pay more attention to hydration.  I didn't even drink one full bottle...maybe 1/2 a bottle?  That really caught up with me in the end. I think with more hot weather races, I will also try using salt tabs or something similar.

Here's a link to a photo taken on the climb!  I think I am grimacing but maybe it looks a little better than my super-serious marathon face?  You'd have to ask my mom and aunt, who have been the most frequent recipients.

A Role for Leptin in Type 1 Diabetes?

While glancing over today's science headlines, I noticed a write-up in Science Daily of a study from UT Southwestern Medical Center involving the administration of recombinant leptin (Amlylin Pharmaceuticals) to non-obese mice (which serve as a model for human type 1 diabetes).  Treating the mice with leptin alone, the researchers saw a return from a ketogenic state and a normalization of blood sugar levels, as evidenced by a normalized HbA1c.  They postulate that leptin mediates this effect by suppressing glucagon and therefore glucose production via glycogen breakdown in the liver.  The most exciting aspect of the study to me was that the improvement in blood glucose levels was not accompanied by the wild variability that people with type 1 diabetes deal with daily.  There were also improvements seen in lipid profiles and other biomarkers related to complications of type 1 diabetes--heart disease, in particular.  While insulin is a hormone that enhances fat storage (lipogenesis), leptin works in an opposing manner, suppressing lipogenesis.  Another effect of treatment with leptin was that the mice returned to a normal weight (vs those on "insulin monotherapy"). The authors found that a combination of leptin and a low dose of insulin led to significant improvements in blood glucose levels as well as in other metabolic markers. 

While I still maintain my wait-and-see approach--after all, how many times has the NOD mouse been cured?--this seems like one of the more interesting research headlines I've seen in a while.  There are some questions I have, such as whether leptin regulation is actually impaired in type 1 diabetes, and if additional administration could have unanticipated consequences.  After all, it clearly is potently bioactive.  Another huge caveat is that the mice started with very low blood leptin levels because they had a depletion of fat due to an initial state of uncontrolled diabetes.  So it is unknown whether leptin would have as strong of an effect in humans with type 1.  Still, I hope that clinical trials are already well into the planning stages.  It seems like a worthwhile avenue of pursuit.  Read the original study at PNAS for the many details that I have missed!

A few thoughts about Jesse

I was not surprised to see a steady stream of friends and family of Jesse Alswager pour into the church for the 4-hour visitation prior to his funeral last Monday.  Several people I've grown to know and love through Triabetes were there, as well as other friends of Michelle's that I've gotten to know in the past few years.  We took time together to reflect on Jesse and what a wonderful and amazing kid he was, and how he will be missed--of course tremendously by his family, but also by the rest of us.  The last time I saw Jesse was when he gave up his room for me to stay with his family for the JDRF Gala last spring.  He had this confident and happy manner about him that I will not forget.

During the two short days I was in Madison, I learned even more about Jesse.  My strongest impression was how well loved he was by everyone who knew him, and how he will be missed immeasurably.  He was a light in the lives of many.  I thought I would share just a few of the many other things that I learned.

When his sister's friends came to visit her, they also wanted to visit with Jesse. He had a knack for making them laugh and keeping life fun.  They felt like Jesse was their little brother, too.  He was a loved big brother as well, and didn't complain to have his little brother come along.

Jesse was an excellent student of the guitar; his teacher put his lesson last because he enjoyed teaching him so much and liked to end his day that way.  Jesse didn't need to be reminded to practice.

His school friends loved him dearly and wrote their thoughts down on some large banners that were displayed at the visitation.  It was clear that he touched many people at his school.

Jesse never complained about having diabetes, but took it all in stride.  I don't know many who can make this same claim.  I think the only time he had a hard time was the first time he started using insulin pump infusion sets.  Those needles are long. . .

Jesse represented all of us numerous times in local, state, and national events.  He was honored by Governor Doyle of Wisconsin and had opportunities to testify before Congress regarding stem cell research and other issues.  He was an advocate helping to improve the lives of all of us with type 1 diabetes.

Jesse loved snowboarding and loved his good buddy Sean Busby, who loved him equally back.  With Jesse's inspiration, Sean took his snowboarding camps to a new level, helping many kids with type 1 diabetes the world over.  Sean asked us to ponder, when we might be too afraid to move ahead in life, what Jesse might do.  Don't wait; go for it.

Diabetes was obviously a part of Jesse's life but he was still a kid like any other who loved to be with friends, to spend time with his family, and to pursue other interests.

These are just a few thoughts that don't even begin to do justice in capturing Jesse's spirit.  For that, I would recommend that you read the poem by Joe Brady that is posted here on Michelle's blog.

It is still hard for me to wrap my mind around the reality of what has happened.  My heart aches for his family.  Yet, the message that I carry with me is to take charge of life, and to live it with joy and wonder, despite diabetes or whatever other obstacles might appear before me.  I hope that by doing so, in some small way, I can honor Jesse's life and keep him and his family in my heart.

BRAVA Magazine Hosting Fundraiser for Jesse

The following was posted by BRAVA magazine, where Jesse's mom, Michelle, works.  If you are in the Madison area, please consider attending this event.  This is separate from the events on Monday at the Good Shepherd Church.

Here at BRAVA, we are mourning the loss of an extended member of our company's family.

On February 3rd, 2010—at age 13—Jesse Alswager was taken from his family and friends all too soon. Jesse, the son of BRAVA's Marketing and Events Director Michelle Page Alwager, lived with type 1 diabetes since age 3 and was known as "everyone's little brother." Jesse and his family have been recognized as strong advocates nationwide for type 1 and finding a cure, and he was passionate about guitar, drums and snowboarding.

Spread the word and come out to the Lazy Oaf Lounge anytime after 5pm on February 10th to celebrate his life and raise money for the family. There will be a free buffet of food, a place to donate to the fund directly and in addition, 50% of the proceeds from anything purchased that evening will go to the Jesse Alswager Memorial Fund.

If you aren't able to make it, The Jesse Alswager Memorial Fund has been set up at UW Credit Union, and all UW Credit Union branches will be able to accept donations, or donations can be mailed to:

Jesse Alswager Memorial Fund
c/o UW Credit Union
PO Box 44963
Madison, WI 53744-4963

If you'd like to donate online via Paypal, visit: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=GMW43ZYQXJR9C

Please spread the word and keep the entire Alswager family in your thoughts...we hope to see you there!

Funeral Services for Jesse Alswager

Funeral services for Jesse Alswager will be held at Good Shepherd Lutheran Church, 5701 Raymond Road, Madison, at 7 p.m. on Monday, Feb. 8, 2010, with Chaplain Linda O'Leary presiding. Visitation will be at the church from 3 p.m. until the time of the service. In lieu of flowers, memorials may be made to U. W. Credit Union, Jesse Alswager Memorial Fund.

Share your condolences here: http://www.caringbridge.org/visit/jessealswager
Memorial tributes can be donated from the above link in the "My Story" section.

Memorial for Jesse Alswager

Email from Joe Brady earlier:

Here's the updated information on Michelle Alswager and her son, Jesse.

You can visit a memorial website at http://www.caringbridge.org/visit/jessealswager. There you will be able to read "Jesse's Story," leave a guestbook message for Michelle and her family, and donate to the Jesse Alswager Memorial Fund at the UW Credit Union through PayPal. You can also donate through snailmail at:

Jesse Alswager Memorial Fund
c/o UW Credit Union
PO Box 44963
Madison, WI 53744-4963

The visitation and funeral will be held Monday from 3 to 7 pm on the west side of Madison on Raymond Road. Jesse's obituary is scheduled for Saturday's Wisconsin State Journal.

Watch the local news Channel 27 Thursday evening news at 10:00 for a feature on Jesse. Channel 15 may also have a segment on Thursday (or on Friday).

At present, Michelle and family have plenty of food. She's answering her phone when she can. Since you are a supporter of the cause to cure diabetes, take comfort in Michelle's words and spirit as found on Jesse's memorial website. Michelle writes, "I've spent the past 10 years fighting for Jesse and a cure, and rest assured his passing is just the beginning."

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If you would like to mail a card to Michelle and her family, please email me for her mailing address.

Beyond Belief

I am so incredibly saddened to share that Jesse Alswager, who inspired not only his mother Michelle, but countless others in the diabetes community, passed away last night.  Michelle was tireless in her efforts to support finding a cure for type 1 diabetes, and in showing people with diabetes that they could live full and happy lives.  Jesse was 13 years old, and was diagnosed with type 1 diabetes 10 years ago in March.  He was loved by all who knew him.

More information will be forthcoming but I believe that in lieu of flowers, a memorial fund will be set up.  If you would like to email condolences for Michelle and her family, you can send them to an email that I set up: forjessealswager@gmail.com.  I will make sure they are delivered to Michelle.

I have just heard that funeral services may be happening Monday in Madison, Wisconsin, although this has not been confirmed.  I will post more details as they become available.

From Sean Busby:  "If it was not for my hero Jesse, Riding on Insulin Snowboarding Camps would have been a fling. Jesse and Michelle were my diabetes support system and the reason of making Riding on Insulin go global. Jesse inspired so many and has helped so many children and adults that suffer from diabetes. His mother is an amazing fighter and she fought along side of Jesse for everyone that has type 1 diabetes - in his name. Our sky will now shine brighter now as we have a new star in the sky. He is loved and missed tremendously."

Note: I should re-emphasize that funeral plans are tentative and have NOT been confirmed yet.

Early Bird Crit, Revisited

Last year after my horrible crash, when I was still unable to get out of bed without crying tears of pain, I was faced with the decision of whether I would get a kit (jersey + bike shorts) for the bike race team I had joined.  "Why in the world would I even consider this?"  The final diagnosis had been fractures in my left clavicle, 9 posterior ribs (if I add up all the fractures reported on the Xrays) and L2 transverse process, pleural effusion, severe bruising and road rash.  I have never gone through anything else even remotely as painful, physically, as that experience.  But, I decided that it was not a good time to make the decision to quit.  I would order the kit.

As the months passed, I thought a lot about what I would do with bike racing.  I debated, "Do I actually want to get over this crash?"  Was the right thing to recover and get back in the game, or take my exit?  One might say that it is brave to go back, to face the fears.  On the other hand, what about the notion of learning from one's experience in order to avoid harm in the future?  Perhaps it would be foolish?  What risks could I live with for something that was not required to get along in life?

So early this year, when I decided to attend the Early Bird clinics, I wasn't planning on participating in the practice races.  Last year, I had decided that I would never do a crit again.  Crits equalled crashing in my mind, even though I had seen many friends get through them successfully, uninjured.  I had done 3 of the practice crits and 8 hours of clinics leading up to that race; but those were trumped by one very bad race.  All of this year's Early Bird clinics and practice races, as well as the official crit, were on the same course where I crashed last year, and I hadn't been back since that day.  

When I got there the first week, all the memories came pouring back in. I remembered where I had tossed my arm warmers right before the start (and had seriously regretted later).  Were they still there?  I remembered where I had parked my car, and how a friend's friend had retrieved it for me, since I was in the hospital (and wouldn't be driving for 2 months).  I remembered that trip to the hospital on the spine board, wondering what this would mean for me.  This year, in the first clinic, we were practicing pacelines and one of the mentors was repeatedly encouraging me to move up right on the wheel in front of me; I kept resisting, frustrating him.  All my brain could handle was just riding my bike around that course; feeling pushed to do more put me over the edge emotionally and I pulled out in protest, muttering "I can't do this."  After some moments riding solo and regaining some composure, I joined back up and continued the drill.  Each time I passed that spot, an image of crashing flashed across my mind; but, I noticed that the emotional aspect of it lessened and I was able to focus more on the drill.

My plan was to sit out the practice race; but I thought that, perhaps, I could at least go to the start line. And maybe I could just do one lap, and see how I felt.  Taking the pressure off myself to try to do well, or to even complete the race, allowed me the freedom to relax and just take it at my own pace.  I went one lap with the pack and realized, "I am okay."  I went another and decided I could keep going a few more. When I say "with the pack," I should really say "behind the pack."  I just hung on, not really even in the draft much, prompting frequent "Close the gap!" comments from the mentors.  Really, I was listening; but I just couldn't get in there.

As the weeks progressed, I had some moments where I broke off ahead of the pack. Most of the time I was consumed again; although, I came in 5th at one race.  But in my mind, breaking off was basically an escape, as if the pack behind me was a tsunami wave that might consume me if I were caught.  When the pack did catch me again, I would drop to the back and give up the fight.  I just was not comfortable.  And a couple crashes in those weeks seemed to prove my point. See? I was right to stay out of there.  On the other hand, I also remembered something I had forgotten: I really enjoyed this.  Although I had enjoyed the practice crits the year before, these feelings had been completely silenced by the louder memories of my crash.

Today, I arrived in Fremont after attending all of the clinics and practice races; still I felt uncertain about this, the official race.  I would continue with my "one lap at a time" motto and allow myself to quit if I felt really uncomfortable.  I knew, though, that I would want to complete the race.  We got to the start and I was relieved to see they would continue splitting our field into racers who had completed 10 or more and those who had completed fewer than 10 races.  The weather was similar to last year--sunny and warm--and I could have tossed my arm warmers.  I kept them on.

As we began the race, I noticed that I was much more comfortable, at least staying with the pack (well, most of the time).  I again took the position in the back, but at least stayed in the draft more than before.  I didn't go for any breaks; my main goal for the race was to become more comfortable pedaling through the corners with the pack, remembering how I used to feel doing that.  As the race wore on and as one mentor, aware of my corner anxiety by now, gave me helpful pointers, my confidence increased.  Why, if I was going the same speed and following the lines of other riders, would I be the one to go down?  I started to feel the road better, and to feel my anxiety a little less.  I stayed in the pack a little more at times, but just focused on being safe.  I found the advice to keep a broader view of the race, rather than to focus on the wheels just ahead of me, to be very helpful in anticipating the pack slowing and surging.  I can't say that I was totally comfortable, but I wasn't miserable either.

We approached the last lap, which was when I crashed last year.  The last lap can be dicey, when people are tired and positioning themselves for the final sprint.  I wasn't sure if I would try anything or just coast in.  I could see that some people were not going for it and I thought I might as well move up a little.  I gave it a good effort and crossed the line feeling happy and relaxed (well, and completely winded).  It was over and there was no repeat trip to the hospital.

Earlier in January, I had wanted Tara to take me to the point on the course where she had witnessed my crash; I was obsessed with going over every detail.  I thought that I still wanted to hear her perspective on that today.  As we were riding over, I thought, "I don't even really care about this anymore."  She gave me her feedback, but somehow, I just felt like the story was old and over, like a movie that had become boring after too much viewing.  I was done.

I still suspect it may take me time to get totally comfortable; but I think, now, that this is more a matter of me just becoming more skilled, rather than carrying a lot of fear from the crash.  I will definitely be very mindful and careful and will respect my intuition; I will continue to give myself the freedom to pull out of a race if it feels unsafe.  But I am really excited to feel free of this mental block that has been holding me back.  I didn't know whether doing this race would really make a difference; my sense today is that it has. I feel excited and happy to be opening the next chapter, to see what stories will unfold.