The Inspirational Ride to Defeat ALS, Napa Valley

A few weeks ago, my husband Jesse and good friend Nate road in the Ride to Defeat ALS in Napa Valley with Team Mazzetti.  Even though I did not participate I was very glad I went for many reasons.  It was a great experience for our family, as well as seeing my husband's co-workers/friends ride together as a team.

My children and I slept in while my husband woke up early in the wee hours of the morning to meet up with his team at the starting line.  We had spent the night in the Napa Valley region so there was no risk being late!  In the late morning my kids and I headed over to the Calistoga Area to wait at one of the rest stops.  I had been following my husband on a new iPhone app called "Find Friends" but I don't know if I misread the map or GPS but I couldn't figure out where Team Mazzetti was.

I eventually figured out I came out to the race too early so I headed out to find a park and found a playground at Pioneer Park in downtown Calistoga.  The kids happily played for about an hour until I realized Team Mazzetti was near by, so we hopped in the car and headed to find the team taking a break in Napa Valley's beautiful vineyards! (picture above)

The kids had been away from daddy all day and they were having "daddy withdrawals", so we made sure the kids got lots of hugs from Jesse.  One of the team members could no longer ride, so after we said our goodbyes we shuttled him back to the finish line at the Yountville Veterans Home.

I had been to two rest stops and later at the finish line...the one thing that amazed and inspired me was a particular family who had a sign that said, "You are doing this for my daddy!!" and it literally broke my heart.  At the same time it brought the significance of the ride, that this was not a race but truly a ride to defeat ALS.  Not only were the families present but people with minor ALS were participating in the ride as well as being present at the finish line.

Over the past couple of months, it has come to our attention that family members of our friends have passed away from ALS.  Jason Fried, a fellow outdoor family blogger (1 Quest 2 The Next), was open enough to share with me that his father passed away NINE WEEKS after he was diagnosed with ALS, nine weeks.... Another friend of ours, Kevin shared with my husband that at the age of 12, his mother passed away from the "horrible condition" after six years of battling with ALS.  This whole process has changed my significance of races with running, riding, etc., to truly finding the meaning behind these activities.

60 Miles - Family Rider!!
My second inspiration was this riding family!!  I'm assuming the woman I saw riding near by was the wife/mother, she's not pictured but she was right behind them.  I saw them at the 60 mile course and my husband briefly spoke to them at one of the rest stops.  I thought to myself to ride 60 miles as a family....that takes dedication! We've recently taken up biking as a family and my kids can barely take 20 miles in the bike trailer so I can appreciate the time and effort that this family did to train

If anyone knows the family pictured above, please forward the link to them and pass on my email to them:

The Finish Line
I think I had tears in my eyes the entire time we waited for Team Mazzetti.  With every rider came cheers, hugs and riders almost passing out! Teenagers, women, men, elderly riders crossed the finish line all with smiles on their faces, some riders saying the ride's motto "NEVER GIVE UP".  My kids played in the leaves, climbed trees for and hour and a half while we waited for Team Mazzetti to finish.  At last, one by one Team Mazzetti came in and all of their FIRST Century Ride was over.

My kids were happy to have their daddy back, Team Mazzetti was happy to have finished, and I was happy to have seen this great ride.  This has left me with the desired to ride next years Ride to Defeat ALS with my kids! My goal is to ride the 27 mile ride towing my two kids, while my husband does the Century Ride and not only for the fun of it but because it is truly a great way to support this cause.

Thank you to all who supported us by donating financially, both Jesse and Nate met their fundraising goals as well as Team Mazzetti raised over $2,000 combined!  Thank you all who supported us with giving us a place to stay, prayers and sending good vibes!  I truly pray and hope someday there is a way to Defeat ALS as well as other health issues that plague our communities like cancer, mental illness and many others.

Looking forward to next year's Ride to Defeat ALS!

To read about an actual riders point of view, please visit Nate Rische's post "Road Race Report: It's Supposed to Hurt Like Hell!" on The Absence of Something Substantial.  

Related Posts and Links:
  1. Training for a Cause - Ride to Defeat ALS
  2. Road Race Report: "It's Supposed to Hurt Like Hell!" by Nathan Rische
  3. 1 Quest 2 The Next

Training for a Cause - Ride to Defeat ALS

Ride to Defeat ALS
Mazzetti, a construction and engineering firm from San Francisco, California has been organizing a company team for a couple of years to support the "Ride to Defeat ALS" in Napa Valley, California.  Mazzetti started participating in the ride on behalf of a good client's husband with ALS (Lou Gehrig's Disease).  This year my husband, Jesse and his best friend, Nathan will be part of Team Mazzetti on The ALS Association, 9th Annual Ride to Defeat ALS on September 28, 2013. 

"Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative diseases that affects nerve cells in the brain and the spinal cord.  Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.  The progressive degenerative of the motor neurons in ALS evenutally leads to their death.  When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost.  With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed." ("What Is ALS?" The ALS Association. N.p., 2010.Web. 08 Sept. 2013

Jesse Avery - Mazzetti
Since 2007, Jesse has been riding recreationally, mostly short rides with occasional longer rides around the San Francisco East Bay.  He started riding more frequently to and from work across the Bay to Stanford University in 2011.

As of a couple of months ago, we decided to add road cycling to our outdoor family activities and Jesse is now towing our two toddlers on our family rides as well as training on longer rides with Nate.  This will be Jesse's first century ride (100 miles), in fact when he decided to join Team Mazzetti he had never done more than 50 miles in a day.  Jesse is very excited to be riding in his first century ride for ALS.

Nathan (Nate) Rische - FedEx
Photo Courtesy of Nate Rische
A late bloomer in a family of cyclists, Nate finally jumped in the world of cycling about two years ago when his car broke down for extended mechanical issues.  He borrowed a bike to ride to work, and then walked down to the local bike shop and spent more money than he planned for his own bike.  He rode to work, then began riding on the weekends for fun, and then his rides kept getting longer and longer.  This will be Nate's first official century, a previous attempt was thwarted by a mechanical failure on his bike.  You can follow Nate's adventures and writings at In the Absence of Something Substantial.

Fundraising - Ride to Defeat ALS
Jesse and Nate are trying to raise $500 each (a total of $1,000) for Ride to Defeat ALS.  Donations go to The ALS Assocation which helps patient programs to research for ALS.  For more information in regards to donations please click here.

To donate on behalf of Jesse please visit Jesse's Participant Page.

To donate on behalf of Nate, please visit Nate's Participant Page.

Personally, I'm really proud and excited for my husband and our good friend Nate.  Jesse and Nate have been riding together for almost two years now without a particular ride or cause in mind but when Jesse received an email at work about joining Ride to Defeat ALS, Jesse jumped right in as well extending the invitation to Nate.  They've been training hard these last few weeks even with hectic work and life schedules.

Thanks guys for riding to defeat ALS!

Related Posts and Links:

I'm Allergic to Myself?!

To read a detailed description on my previous anaphylaxis episodes please read:

I'm Allergic to Exercise and Forever Allergic to Exercise

Pregnant hiking!
A small recap: I have had three life-threatening anaphylaxis episodes all during exercising (running, hiking and doing krav maga) since 2004 with no clear explanation.
  • January 2009: Our Peru trip, where we hiked 30 miles on the original Inca Trail with no exercise induced anaphylaxis.
  • April 2009: we were blessed to get pregnant to our little boy and he was born in December 2009. All year long I never had any allergic reactions.
  • March 2010: Three months after I gave birth I finally had the energy to go for a morning run since giving birth, only to stop less than a mile because I broke out in hives, burning sensation all over my body and throat tightening.  I visit my regular doctor a few days later and I was referred to my new allergist specialist at Palo Alto Medical Foundation, Dr. Lee.

We spoke for a very long time about everything that was related to my first incident in October 2004, six years prior.  Foods, medication, exercise, routines, hormonal changes, pregnancy, etc.  Dr. Lee gave me two explanations that only sort of satisfied the need to know what was wrong with me.

NOTE: This was my personal doctor's information in regards to my condition and I am not a medical physician.  Please seek health information and advice from your personal physician.

  1. Food Induced Exercise Induced Anaphylaxis (EIA): Meaning after I ingest a certain food (cheese, milk, nuts, etc) and exercise soon after having eating it, it triggers an anaphylaxis episode.  Therefore, I need to keep a daily food/exercise journal in case I had another episode I would know exactly what was eaten and what I was doing at the time of episode.
  2. Exercise Induced Anaphylaxis (with no external triggers): Meaning something happens inside my body (mostly likely women's hormones) when I exercise that causes an allergic reaction, such as my internal body temperature rising.
In both scenarios, extreme temperatures (cold or hot) and Non Steroidal Anti- Inflammatory drugs (NSAID's) such as Advil, Motrin, Ibuprofen, would aggravate the symptoms more.  The example he gave me was throwing lighter fluid (NSAID's) on a small fire on a windy day (Cold or hot temperature).  Not a good combination.  He said the most desired phrase people want to hear from their doctor, "You are allergic to exercise!" but proceeded to say that the only way to combat this condition was to exercise and find what my exercise "threshold" was and continually push the threshold back.  Since I had a long break from really exercising during my pregnancy he said that my threshold was really low and even fast paced walking might be too much.

This really put a damper on running and hiking! Eventually I worked up to running a bit as well as hiking but not as much as I would have liked before I got pregnant with our second child, in January 2011.  A few weeks into my second pregnancy, we went for a long walk and when we returned I was covered in hives and wasvery itchy; within an hour all the hives were gone.  A doctor visit proceeded and my doctor quickly identified that my EIA was not food-induced.  That it was a systematic reaction to my own body, I'm allergic to myself when I exercise! Dr. Lee said it was most likely due to the hormonal pregnancy changes and I was very susceptible to episode during and after pregnancy, even if I breastfed my child.

Huh? I was immediately frustrated.  What was I supposed to to? Not exercise? I wanted to at least walk during my pregnancy without a fear of going into an allergic reaction.  Dr. Lee was very understanding and said I could try to find my threshold during pregnancy and post-pregnancy or I could take Zrytec (regular allergy pill) 2 hours before exercising.  Well I wasn't too keen on taking medication during my pregnancy but I also wasn't to keen on going into anaphylaxis during my pregnancy either.

To summarize the last year and a half of my indecision of exercising, I now take Zyrtec before any type of exercise.  I finally came to the conclusion three weeks into training for my half marathon last year (I came back from a run in hives), it only costs me $0.33 a pill to not go into EIA so why no take it?  My doctor said it was safe to take during pregnancy and breastfeed so why was I fighting it? Just my own stubbornness was causing my not to enjoy being active again.  Since then I have run my first half marathon, been extremely active with hiking and running again and now feel safe when I exercise.

I carry Zyrtec, Fast Melting Benadryl and two Epi-Pens with me at all times and always know where the nearest medical facilities are.  Now I have the freedom to live my active lifestyle that I desire without the fear of dying from EIA.  I thank God for giving me this condition that forces me to never stop exercising and my doctors who helped me find out what was wrong with me..  Thanks to Zyrtec which allows me to exercise again!

So here's to a happy and active lifestyle from someone who's truly allergic to exercising!! If I do it then you should too.

Forever Allergic to Exercise

December 2007: A few days had gone by and I was back to normal, no more heart palpitations and I felt fine. I had set up an appointment with an Allergist at Kaiser Permanente, Dr. Lippert.  I met Dr. Lippert, told him about my Georgia anaphylaxis episode.  We talked about in great detail about my Mount Tamalpais episode.  At this point, we still did not know it was Exercise Induced Anaphylaxis (EIA), all Dr. Lippert determined was that I was terribly allergic to something and with each episode that occurred we could determine a pattern and hopefully someday find out what caused my extreme allergy. Process of elimination.  At this point we still thought it was something environmental.  That was it.

May 2008: Once again I had woken up with a migraine, took some ibuprofen and went to work. My husband, Jesse and I had recently signed up for a local Krav Maga class.  I had taken another ibuprofen earlier in the day and it finally made my migraine away, so after work we went to kick some butt at Krav Maga.  Ten minutes into this high intensity class, I immediately felt the burning hands, feet, and throat closing.  I ran over to Jesse and said, "It's happening again..." and we ran out of the class to go to the Fremont Kaiser Emergency Room. I had my Epi-Pens with me and I tried not to use it, because who really wants to stab themselves in the thigh with a needle?

As soon as thought that, the burning sensation spread throughout my body like wildfire and I started gasping for air so I did it, stabbed myself in the right thigh.  Jesse dragged me into the ER, the medical personnel rushed me into the back and did not let Jesse come with me until he paid our ER co-pay....I'm still a little irritated about that.  That's Kaiser Permanente for you.

The ER doctor coached me into catching my breath and helped me control my breathing so I could slow down my heart. The front personnel eventually let Jesse in, the nurses pumped me full of Benadryl and proceeded to ask me a barrage of questions. What the ER doctor eventually concluded was I needed to go see my specialist again and not take ibuprofen anymore.

A few days later I met with Dr. Lippert and we talked in detail everything I ate and did, etc. He conducted a skin test but I was not allergic to any of the pricks. Dr. Lippert then suggested there had been a few cases of food ingested EIA, and thought that could be a possibilty but none of the skin pricks came back positive. Dr. Lippert also suggested that I no longer take ibuprofen just to be safe. He said that maybe we could possibly trigger an episode by taking some Ibuprofen and exercising, but it was up to me because he was not going to force me into another anaphylaxis episode.

A few weeks later we tried triggering an episode.  I took some ibuprofen came to his office and ran up and down stairs but of course nothing happened. He thought maybe the dosage was to low or maybe it was food induced. Who knew at this point? He mentioned that I might never know and I would have to walk around with Epi-Pens my entire life.

I asked if it could be anything else and Dr. Lippert had read about rare cases of EIA occurring due to a raise in body temperature during hormonal changes but that was extremely rare. Little did he know....

Related Post:  I'm Allergic to Exercise

I'm Allergic to Exercise

That is right. I am medically diagnosed with an allergy to exercise, Exercise Induced Anaphylaxis (EIA). I have been to the Emergency Room three times because of my "condition" and the second time I was actually very close to not breathing anymore. There are many different levels of an allergy and anaphylaxis is the worst, as my husband would say its your body trying to kill itself. Since 2004 up until early 2011, I did not exactly know what was wrong with my body.

October 2004: I was living in Brunswick, Georgia at the Federal Law Enforcement Training Center (FLETC) training to be a Special Agent.

Part of my overall training was physical training. At this point, it was a fairly difficult physical training program.  It was three months after I arrived at FLETC that I had my first EIA episode.

I remember I had a headache that morning, so I popped an ibuprofen and thankfully it went away before I had my PT class. Our trainers decided to take it "easy" on us and we were going to run 5 miles. Half way through our first mile I tripped on a rock and fell on my knees. I fell a little behind from my group and started to feel sluggish and my face started to itch. I pushed through it but by the time I reached one mile my face and neck were on fire. I stopped running and called our trainer over and he said maybe I brushed up on something when I fell down or a crazy Georgia bug bit me. They rushed me to the FLETC clinic and each second that went by my face burned more and more. My face was swelling up and my throat had started closing up. I saw my reflection on the door windows and I looked awfully swollen.

I was immediately injected with epinephrine and Benadryl to stop the reaction. Epinephrine stops the body from trying to kill itself and Benadryl is a histamine blocker so it blocks whatever is causing the allergic reaction. I was bombarded with a ton of questions as I was physically examined until the medication took affect. What are you allergic too? What did you eat? Did something bite you? What were you doing? They did a full physical exam to see if something had bit me, but nothing had.

Within 30 minutes all my swelling was gone and I looked normal again but I was left feeling exhausted and hyper at the same time. Benadryl makes you terribly sleepy and epinephrine is pure adrenaline so it's like having an upper and a downer at the same time, not fun at all. The FLETC doctors couldn't figure out what had happened to me and chalked it up to an environmental allergy and told me I could not run in the forrest trails and that was the end of that.

December 2007: I was working in San Francisco that morning of my second EIA episode. I had woken up with a really bad migraine that day. That was a period of my life that my migraines were awful. I had 3-4 migraines a week, almost every other day. I took some ibuprofen and went on my day. Half way through my work day, we had received notification that my co-worker had gone missing the day before near Mount Tamalpais and we were being called to a search and rescue.

In the afternoon my migraine had come back so I took some more ibuprofen and it went away before we started searching for my co-worker. We paired up with park rangers and hit the trails. We were hiking along calling out for my co-worker, sadly we did not find her that day. Her body was found a month later, from an apparent suicide off a trail nearby in Mount Tamalpais. Sadness.

After going up a somewhat steep hill, my hands started to itch and I wonder if I had touched some poison oak. I ignored it and continued hiking for another 10-15 minutes until I knew something is clearly wrong. My feet and hands were burning, my throat started feeling tight and each second that went by the burning sensation was spread all over my body, fast. I told the park ranger that I was having an anaphylaxis reaction to something but I did not know what. The park ranger radioed the fire department, requested medical assistance.

I was very internally scared because I was in a lot of pain and each second that passed by my throat is getting tighter and tighter. I called my husband and calmly told him what was happening and told him to come to the nearest Kaiser near Mount Tamalpais. In hindsight, I wanted to hear his voice in case I died on the mountain. I called my co-worker Oscar who was near by at the other end of trail and he ran up with the Jr. Park Ranger he was with.

The ambulance could not make it up the hiking trail so the firemen said they would arrive in an off road truck and it would take a little longer than they had hoped. At this point, I'm sitting on the floor trying to keep still and calm because I knew if went hysterical, my reaction would get worse. I felt like I was on fire, I had hives everywhere, I was swollen and my throat is was getting tighter and tighter. The Park Ranger, Jr. Ranger and Oscar were trying to keep me calm and after what felt like an eternity we finally see the trucks headlights down the mountain. The firemen finally arrived and I was going insane internally from all the pain. They asked for my weight and height to get the proper medication dosage. They gave me an oxygen mask and injected me full of epinephrine and Benadryl, lots of it. I lost it after I knew the medications were in my system. I started scratching and maybe screaming from the pain, it's somewhat a haze after that. Oscar decided to take a picture when I was sitting in the back of the truck (the picture above).  I think I'm smiling in the picture but like I said I was in a daze.

The firemen had to transport me down to the ambulance that was waiting for me at the trail head. On the way down I started to feel much better and worse at the same time. I could breathe, the hives were going away and the burning sensation was less and less, but the side effects of the medications were really strong. I started to get very drowsy but I was having rapid heart palpitations. I started to also have a mental disconnect from my body. I could tell that I was not well by the way the firemen were asking me questions. The same questions I was trained to kept someone awake during a traumatic event. I hear.....what's your bosses name? How old are you? Are you married? What's your husbands name? I heard the questions and tried to answer them but my mouth could not respond for a few seconds. My brain could process things quicker than my body could respond. Then I shook uncontrollably and was cold from all the epinephrine.

In a daze then moved me over to the ambulance where I was strapped down, given more oxygen and had an IV stuck in my hand. Those EMTs are amazing, how he put an IV in a moving car without hurting me. The EMT kept on asking me the same questions as the firemen did. Finally got to the hospital, the ER doctors evaluated me, gave me some steroids to keep the allergy down, prescribed some Epi-Pens and referred me to an allergy specialist. They said you are terribly allergic to something and have to find out what it is. I saw my husband and parents a little later and was discharged, I was very happy to see them. I was still in a daze the rest of the night, my heart palpitations lasted for a couple days and I felt exhausted. Jesse and I stopped for some Popeye's and a tub of Haagen Das chocolate ice cream and I ate the whole tub with very little help of my husband.