Aquabike Race Report

Lake Tahoe is probably one of the most beautiful places I have ever thought about doing a triathlon. Even with some haze from the fires in Northern California, the setting was perfect. Small mountain town, huge, clear, freshwater lake, and my Team Challenge family!

On Saturday, I did a pre-race shakeout swim with some lovely IBD warriors - boy was that water cold, but it felt good! We had our inspirational pasta party that night, where I was able to share my story and thank everyone for racing on behalf of the 1.6 to 3.1 million Crohn's and Ulcerative Colitis patients (also, PASTA BUFFET!)

Sunday morning came quickly, though I was able to get some relaxing shut-eye before waking up at 4am. I did some stretching, got dressed and bundled up as much as I could before heading out into the 40 degree morning. No bears stole my breakfast from the hotel lobby, so I enjoyed part of a pastry, a banana, and a couple bites of yogurt. (Side note, who peels hard boiled eggs before serving them?!)

We packed up the car with my bike and transition bag, and left the hotel at 5am to get to transition when it opened at 5:30. I got everything set up pretty quickly, all that was left to do was stay warm until it was time to put my wetsuit on. My toes, nose, and ears were all freezing, but I knew the water would be warm(er than the air). At 6:40, I went to put my wetsuit on, then headed on down the hill to the swim start. When I got to the start, I realized I forgot to leave my flip flops at the swim exit, so my amazing sherpa (Christina) took them over for me - and held on to my warm jacket as well.

I got in and did a little bit of warming up, but the water was cold, and any time part of my body would leave the water, the air would make it even colder, so I just tried to keep moving. Of course the swim start was delayed about 20 minutes, so I spent about 30 minutes in the water trying to keep warm. I met some people, found my Team Challenge ladies, smiled for a couple pictures, did our TC cheer (What do we do for fun? Swim, Bike, Run! TC Tri! Wooooooo!), and then it was time to start!

There were probably 50-60 people in my wave, about 15 were women, the rest men. It was a crazy start, I got kicked, kicked some people, may have accidentally swam over a bunch of people... and finally made it out to the first bouy about 250 yards from the start, where I was finally able to find some calm water. I got into a rhythm, and tried not to think about how cold the water was. Sighting 3/4 of a mile away was pretty tough, but as I got closer to the turn, I was able to straighten out. The lake was super clear and blue, so I just focused on enjoying that - and the clear, non-salt, non-dirt-y, non-icky water.

At the first right turn to start to come back in, I saw that there were a couple people in front of me - but I couldn't see anyone behind me except the one person right on my feet. Finally, I made it to the last bouy (the one left turn), and headed the 200 or so yards to the finish, ran up the "stairs" and up towards transition. Christina found me, pointed out my shoes to me, and joined me in the run up  the hill to transition. I saw the Team Challenge cheer squad right before the crazy climb, and they were all cheering like mad! Christina told me I was the first woman (and 3rd person) out of the water - though the person right on my toes was also a woman.

Swim: 1.2 miles; 28:58; 1:22 / 100 yd pace

Transition was slow. I had to climb that darn hill first, and then grab everything I needed for my long, 4-5 hour bike ride. I took my time drying my face, feet, and hands, put on my socks, shoes, helmet, gloves, and grabbed my food and phone, took a bite of a Luna Bar and a couple swigs of Gatorade and water, and was off.

T1: 7:42

And then I was off on the bike! I started my watch, which was supposed to go off every 10 minutes to remind me to hydrate. Of course, my wrist was completely numb from cold, and then the road was a little bumpy, so I never actually felt it go off... The bike course was 3 out-and-backs, two to the right (2 x 16 mile laps) and one to the left (1 x 24 mile lap). The first 32 miles were relatively flat, maybe 1000 ft of climbing total. I was a little bit cold on the first 8 miles, as I had elected to leave my warm cycling clothes in transition. I dried off pretty quickly, and enjoyed the full-sun parts of the course. As I was going, I made sure to thank all of the volunteers, especially the ones directing traffic so we didn't get hit by cars at the turnarounds! As I came in on my first loop, I saw where the aid station was for the second loop, and decided to make a pit stop there to have some nutrition and water. While there, I ate another bite of Luna Bar, took a swig of Gatorade, and refilled my water bottle. After the last turnaround (at about 25 miles), I stopped for another fuel and rest break, and enjoyed the view of the lake for a couple minutes. I didn't want to take another break until I had started the climbs of the last 24 mile lap.

I sped through miles 25-32, saw Christina where the two loops met, and started climbing. The good news is I figured I would take about 2 hours on the first 32 miles, but it was actually closer to 1 hour, 45 minutes (~ 18 mph).

I realized that I needed additional nutrition to make it up the climbs ahead, so I stopped partway up the first little hill for another bite of Luna Bar and some Jelly Belly Sports Beans, then went back to climbing up hills. I had trained for hills, but in retrospect, probably could have done additional hill work to make those climbs easier. There were six main climbs on the route, two Cat 4 and four Cat 5. The first was a Cat 5... to get the legs warmed up? I made it up and over that one, was rewarded with a short downhill before starting the steepest of the six climbs, one of the Cat 4s.

I stopped about 1/2 way up the hill for a quick break, then continued on. About 1000 ft from the top, my legs were screaming louder than my head, so I hopped off and walked my bike, following one of the guys. Christina was at the top of that hill, so I took a longer break to hydrate and refuel - and get my arms sunscreened-up by my sherpa!

Then it was time to enjoy the downhill to Emerald Bay. I saw a lot of my TC teammates while I was on the descent (they were climbing the other direction for the Olympic distance tri), and I knew if they could do it, so could I! Emerald Bay was pretty busy with tourists, both in cars and on foot, so I wasn't able to enjoy the downhill as much as I had hoped, and had no momentum to start the 1 mile Cat 5 climb to the top. I had to walk the last 1000 ft again, but was able to pass one of the guys who was also walking his bike. From there, it was all flat or downhill to the turnaround, so I had a lot of fun with that, even with the sharp switchback turns. I finally made it to the bottom / turnaround / aid station, so I stopped for a nice long break. I knew I only had 12 miles left, but had to get my head on-board with making back.

After about 15 minutes, I was ready to get going again. The longest, hardest climb was ahead of me - a 3.3 mile, Cat 4 climb. The first half of the climb wasn't so bad, I found a good gear, got into a good rhythm with my cadence, and pushed myself up the hill, including passing a couple guys who had to stop to walk. When my brain started to question my sanity, I started listing all the reasons I was doing this crazy thing - the names of everyone I know who has Crohn's or UC, their caretakers, and the other 1.6+ million people who have IBD. That got me through most of that climb, until I got back to those darn switchbacks, which, at the turns, were probably 10% grade or more. So, I hopped off the bike one more time to get myself over the top, where there was a photographer waiting for me. I smiled while still walking - I didn't want to change my strategy just for a photo op. ...Okay, I stopped to take this picture:

On the way back down into Emerald Bay, I was following a long line of cars and a motorcycle, so once again didn't get to enjoy the downhill speeds that I love so much, nor did I get the momentum to get me up the second to last Cat 5 climb. I knew Christina would be at the top of that  hill, so I got into gear and just started going. I had to chunk the hill to get up as far as I could - first to a cluster of trees, then to a sign, then to the next cluster of trees, and then finally, I decided once I got to the next cluster of trees, I would walk the rest of the way. Christina met me and walked with me for a bit, and then I decided to hop back on at the "Share the Road" bike sign. From there, I knew it was (pretty much) all downhill, save for one more Cat 5 climb. I savored the amazing downhill (especially the hill that I couldn't make it up) - I was probably going close to 40 mph, keeping up with the cars and the speed limit.

Right before the last climb, the Race Director came up to me on a motorcycle to make sure I was okay, and to let me know I had to finish the bike by 12:50pm. I tried to look at my watch, but it wasn't showing the time, only where I was in my 10 minute hydration splits. I told him okay, and knew that I probably needed to kick it into higher gear to make it back in time. I needed a break close to the top of the final climb, but knew I couldn't stop if I wanted to finish, so I hopped off the bike and did some speed walking while holding my bike AND checking my watch. It was 12:43. I had 7 minutes to make it back to transition. I knew I was close, relative to the 56 mile total, but didn't know exactly how much I had left, so I jumped right back on my bike and sprinted toward the finish.

Lucky for me, it turns out I was just over 2 miles from the finish, and it was mostly downhill. As I came in to make the turn toward transition, the volunteer warned me about the sand trap between the road I was on and the bike path I was supposed to take - and she walked with me across the sand to make sure I didn't fall. At that point, I didn't know if I would make the cut off, but knew I had to try, even on the rooted-out bumpy bike path. I turned onto the road toward transition, was yelled at by a volunteer who was picking up cones that I needed to stay to the left of the cones he was picking up, almost ran over a guy walking his dog (had to yell pretty loud to get him to move, because I wasn't going to slow down!), and came cruising toward the dismount line. I hopped off my bike right at the line and started running for the Bike In (where the chip reader was), but the Race Director was there waiting, and asked me what time it was. I stopped to check my watch, and saw that it was 12:49!

I yelled "12:49! I made it!" and started running again. After I crossed into transition, I knew I made it, and was able to relax, but still wanted to make sure I crossed the finish line (I had to for it to count, even though it wasn't factored into my time). I quickly racked my bike, pulled off my shoes, put on my flip flops, and started speed walking toward the Run Out. The race director yelled that he was going to let me go out on the run, but I told him I was only doing the Aquabike, so I was done. Then a volunteer came walking toward me and told me they had just closed the Run Out (in my head, I said "That's fine, I'll jump over the barrier"), he directed me to go out the side of transition instead. I FINALLY made it out of transition with all the direction, and went to cross the finish line! I had to walk back about 20 ft to cross all of the timing chip readers before I could officially "finish" and receive my medal!

Bike: 56 (or maybe only 55?) miles; 4:52:50; 11.5 mph pace

I officially came in 29 seconds before the course cutoff: 5:29:31!

I am so glad that I didn't give up at mile 44. Crossing that finish line with my Team Challenge family was a great feeling, as was coming in just under the cutoff! Would I do it all again? Absolutely. Will I do a half-distance aquabike again? Sure. Will I do that exact race again? Probably not. :)

You can still support my race fundraising efforts here!

A special thanks to my sherpa / spectathlete who also volunteered on race morning! Lots of high-fives to Christina!

Life with Crohn's | Part 7: Living Life & Managing Flares

What is it really like to live with Crohn's disease? 

I've had this disease for 10 years, and can only begin answering this question. Symptoms and lifestyle change daily, and are different for everyone.

Pain. This was my first Crohn's symptom, and continues to be the constant reminder that I have an autoimmune disease. I first went to the doctor for Crohn's due to pain in my lower right abdomen - right near the appendix. I almost always have some level of pain, but generally am able to ignore it if it is a 4 or less on a 1-10 scale. Some days I venture into the 6-7 range, which is pretty unpleasant. When I went to the ER for my surgery, I told them the pain was about an 8-9, but keep in mind that I couldn't stand up straight or walk, and I had a tear in my intestine!

Digestive issues. These are the main symptom most Crohnies experience (typically 💩, 🤢, and 🤮). Unless I'm having a really bad flare, I have been fortunate to avoid these for the most part, not to have these symptoms very often. Another related symptom here is loss of appetite. This happens on occasion, and is tough to deal with. I know I should eat, but am not hungry, or am worried that anything I eat will make me feel sick, so I just don't eat.

Fatigue. I am tired. All the time. It's a miracle I have the energy to train for triathlons (in fact, some days, I don't). Part of this is related to anemia, though my current iron levels are good; Crohn's is just an exhausting disease. I take regular naps every Sunday afternoon, a weekly designated time called Kitty-Kelley Nap Time (Pinky Kitty naps with me almost every time). I occasionally have to take naps during the week too; something that has become much easier now that I work from home. Some nights I also have insomnia - I am exhausted and just want to sleep, but my mind is moving a million miles an hour, or I am restless, or stomach discomfort is keeping me up, resulting in a tough-to-end cycle of fatigue.

Weight Gain/Loss. I have no control over my weight. I won't eat for a week (aside from clear liquids), and will lose no weight, but then when I'm back to eating, suddenly will lose 10 pounds without thinking about it. Or, I'll start exercising and gain 10 pounds. In fact, my body shape completely changed after my surgery, and I had to buy nearly a whole new wardrobe, even though my weight was relatively unchanged.

Diet. I am not technically on any dietary restrictions as a result of my disease; however, what I can eat without experiencing symptoms can change at the drop of a hat. Right after my surgery in 2013, my doctor told me to eat anything and everything I wanted; however, every time I at a salad/lettuce, I would have some symptoms. I stopped eating salad for about 4 months, then tried eating a salad one day, and was fine. Not long after my diagnosis, I realized that eggs made me sick more often than they didn't. It look me almost 5 years, but I finally realized egg yolks upset my GI track. Now I do what I can to avoid egg yolks, though sometimes I fail - back in March, I had a nutella & fruit crepe, which ended up leading to a pretty miserable, flaring week for me.

How do I manage flares?

When these symptoms get out of control, I have to take measures to avoid a hospital stay. As much "fun" as those are, I would prefer to skip them as much as possible in the future. Below are some of the strategies that I use to try feeling better, though there are some instances when I continue my lifestyle without any changes and just suffer through the consequences...

Medication. This is one of the biggest ways to manage the disease. Even when in remission, Crohnies have to continue taking a whole pharmacy worth of drugs to keep it that way. That is why I ended up with a flare earlier this year - the doses on my meds were messed with (lowered), and I didn't realize until I started to feel sick. Now that I'm back on the proper dose, things have calmed down.

Diet. When I feel the discomfort of a flare coming on, my first line of defense is watching what I eat. Clear liquid diets are the most useful (jello, broth, water, non-pulp juice) to help calm my angry intestines. After things start to calm down and I start to get hungry, I'll start easy with the BRAT diet (bananas, rice, applesauce, toast), then work my way up to regular food again after a couple of days.

Sleep. Some days I just need to sleep. Or relax as much as possible. Sometimes I'll work while sitting on our super comfortable couch, getting in as much relaxation as possible. I'll take mid-day naps, or go to bed at 9pm and wake up at 9am, sometimes feeling a bit better (though sometimes not).

Mental games. I try to keep my outward attitude about my disease positive. It is not easy to live with Crohn's, but attitude makes a HUGE difference. I have a lot of fun making jokes and being very sarcastic. I always talk about how much "fun" it is to have Crohn's, how "excited" I am for all of my tests, and how much I "enjoy" taking all of my meds. It helps to trick my brain, and also makes for a generally better experience all around. The outward attitude is contagious to my inner thoughts, which are sometimes less cheery.

All in all, this is a tough disease. Symptoms change daily, and without good strategies to get through it, I'm sure it is even more miserable. That's why I try to focus on things I can control: attitude and listening to what my body is telling me. I've learned that ignoring the symptoms doesn't make them go away; only addressing them will help.


Something else that will help? Finding a Cure!

The Crohn's and Colitis Foundation is committed to funding research that finds a cure for these terrible diseases. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here.

--

Stay tuned for the final installment of this blog series (Part 8): Advocacy

Life with Crohn's | Part 6: Coming to Terms

"When I was diagnosed, I didn't think it was going to be a big deal. I was given medications and was told they would work. However, that wasn't my case. It ended up becoming much more significant in my life, and I was spending every month getting an infusion in the hospital."

-Kathleen Baker, Olympic Swimmer

Those could have been words straight out of my mouth. When I was diagnosed, I had never heard of Crohn's before, and really didn't think it was a big deal. I kept my diagnosis mostly to myself, not for any other reason than I had no idea how it would come to impact my life. Since I was diagnosed in college, the only people who knew were my parents and my swim coach. Eventually, I told my roommates, but only because I needed them to drive me to appointments and tests - even then, it didn't seem like a big deal.

Kevin (then my boyfriend, now my husband) was the first non-family, non-roommate, non-swim coach who I told. I remember the scene as if from a movie - we were at Downtown Disney in LA, off to have some fun adventures. My phone alarm went off at 2pm, reminding me to take my medication. This had happened a number of times before when we were together, but on this particular occasion, Kevin asked why I had to take the massive blue pills in my hand. My response? As if it was no big deal, "Oh, I have Crohn's disease." Kevin: "Like Kurt Kobain?" Me: "Uh, I don't know, I guess so?"

The first time I told someone about my disease more out of necessity than family ties or friendship was right before going on a 12-week tour of the West Coast with Liberty in North Korea. I was to live out of a 15-passenger van with two other people, sleeping on floors, in spare beds, and sometimes even in the van. I figured the people I was traveling with should know that I had Crohn's, even though it never really impacted my day-to-day at the time.

The day finally came when I was to tell my team - I was so nervous, I thought I might cry. I tried not to make a big deal out of it, because I didn't know what to expect from their reactions. I finally just came right out and said it: "I thought you should probably know that I have Crohn's disease." I don't remember much of the conversation, but I do remember everyone being very supportive, asking questions, but not too many questions ("What is Crohn's?" "How will we know if you are struggling with it?")

Luckily, nothing major happened while I was on the road, though after we got back and I started working in the office full-time, I had my first hospitalization. 

The more I told people that I had Crohn's, the more comfortable I was with the diagnosis. Every time I talk about it, people are very understanding, and nearly every time, their response is something like "Oh, my <so-and-so> has Crohn's!" or "Tell me more, what is it, how does it affect you, and how can we support you?" I know that Crohn's can strike it's ugly head at any time, so it is important to keep the people I interact with up-to-speed, so that I'm not suddenly in the hospital one day and no one understands why.

I know that Crohn's disease will always be a part of me (pending a cure), but I can't let it keep me down. I only have control over a few things, including my attitude and mental game. Some days it's hard to stay positive, especially when I'm in a lot of pain or when I'm stuck in the bathroom (or both!). To keep me going, I always look for the bright side, or use some serious sarcasm to help break through (an especially effective tactic during procedures & tests). 

Two years ago, in 2016, I finally joined a group of amazing people training for endurance events (marathons, triathlons, bike races, etc.). I knew about Team Challenge since around the time it was started in 2008 by the Crohn's & Colitis Foundation, but never worked up the courage to join in the fun before that. After my first week with the San Diego team, I realized what I had been missing - a group of people who understood what I was going through and who were trying to make a difference  for the 1.6 million other IBD patients - by fundraising for a cure and to for improving the quality of life for those diagnosed with IBD, such as hosting support groups.

After 10 years of having the title of "Crohnie," I am finally at a point where I can openly talk about my experience: where I have been, and where I hope to be in the future (with a cure!). It has not been an easy journey, but I am grateful that it has brought me my Team Challenge family, and some "exciting" stories of  💩 and hospitalization.

Help others come to terms with their diagnosis!

It takes time, but also a strong support network like that provided by the Crohn's & Colitis Foundation and Team Challenge. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here. 

-----
Stay tuned for Part 7: Living Life & Managing Flares

Life with Crohn's | Part 5: Procedures & Tests

There are a number of procedures and tests used to diagnose, check, and manage Crohn's disease: colonoscopy, MR Enterography (a fancier MRI), endoscopy, blood work/lab tests, CT scan, and more! Three of these tests involve drinking some sort of nasty beverages... read all about it below!

MR Enterography
I had my first MRE in fall 2012. My doctor at the time was concerned with the state of my Crohn's disease, and wanted me to get a second opinion at Cedars Sinai. The doctors there knew that the main location of my disease (a couple inches into the terminal ileum) was tough to get to via colonoscopy (see below!), so they wanted to try a different way to see my disease, and the extent of the swelling. Amazingly, you can see everything with an MRE (a special type of MRI using barium and contrast dye for a clearer image. Barium is administered by drinking some thick, milky, salty substance, contrast by IV). It was there that they saw fistulas forming, and how inflamed my gut was.

Since then, I've had an MRE almost every year, typically around mid-July. In fact, I am due for my next one tomorrow! It is a great way to visualize what is going on, and my doctor is now able to make decisions based on what she sees in those images.

Blood Work / Lab Tests
Every 3-4 months, I have the privileged of getting poked in the arm and have a couple vials of blood stolen from me to check for important things like CBC (Am I anemic? Do I have increased/decreased red and white blood cells?), Liver Panel (Is my medication ruining my liver?), and vitamin levels (Is my body absorbing nutrition?). Once a year, I also have to have a TB test to make sure I don't have tuberculosis, since I am more at-risk of contracting it while on my immuno-suppressing medications. When things are going really bad, my doctor may also order a stool sample to see how things are going at the other end. <sarcasm> What Fun! </sarcasm>

CT Scan
A CT Scan is a quick and easy(ier) way to see my disease with imaging. This typically involves drinking barium (or getting a barium enema - which I do not recommend) as well to help the radiologist see the inside of my intestines better in the images. CT scan was the test used to first diagnose my Crohn's, and is the test they used both times I went to the ER to get a quick view of the disease.

Endoscopy
This test is the easiest of them all. I've only had one, and it was only to check out as much of my GI system as possible to ensure there weren't any additional issues as a result of the Crohn's. Essentially, the doctor knocks you out with some good meds, then sticks a camera down your throat to see the inside of the esophagus, stomach, and first part of the small intestine. As a result of the procedure, I was diagnosed with a hiatial hernia (where the valve between the esophagus and stomach does some funny things), likely the cause of some of my crazy hiccup attacks, as well as some minor stomach ulcers.

It's the one we've all been waiting for... the COLONOSCOPY!
As a young old person, I had my first colonoscopy at age 20, a procedure most people have around age 50 (if you're 50 or over and haven't had one yet, go see your GI!), then every 10 years after that for colon cancer screening. Including that one when I was 20, I have only had 4 colonoscopies (about 1 every 2-3 years). This is mostly due to the location of my Crohn's - it is higher up than a typical colonoscopy can reach, so it is a less useful procedure for me.

I'll spare all of the gory details, but I will tell this one story:
Colonoscopy prep involves drinking 64 ounces of laxatives, and you aren't allowed to eat solid foods (clear liquids only!), and no colored food that might discolor your insides (e.g., reds, blues). Essentially, for 24 hours before the procedure, you are stuck drinking lots of water, apple juice, chicken broth, and lemon-lime flavored beverages / jello / popsicles. I was so sick of lemon-lime (mind you, the prep is usually a salty lemon-lime flavor too) that I sent Kevin out to find anything non-colored and non-lemon-lime flavored. he came back later with BANANA flavored popsicles! It was probably the best thing that has happened to me while prepping for a colonoscopy!

Also, I'll share a few colonoscopy prep tips:

• The day before, eat a very light meal (I recommend things like clear liquid soups, bananas, rice, applesauce, toast, etc.) - do not eat a Quiznos turkey and cheese sandwich, you will be in for a long night
• Make some Jello in advance (non-lemon or lime flavors)
• Prepare some chicken broth (if you're not at home, just heat up water in a coffee pot & mix it up!)
• Buy some good air freshener (I recommend Lysol Neutra Air spray)
• Buy some good wet wipes (or if you have a really sensitive bum, preparation H wipes)
• Plan to spend a lot of time on the toilet

Help reduce the need for all of these procedures and tests!

This year, I am once again taking part in Team Challenge, participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here. All funds go to the Crohn's & Colitis Foundation, dedicated to finding a cure!

-----
Stay tuned for Part 5: Coming to Terms

Life with Crohn's | Part 4: Doctors

I have always advocated that patients should find doctors with whom they are comfortable and trust. I had to take my own advice this year to switch doctors, even though it means traveling out of state for quality care. In addition to a Gastroenterologist (GI), a Crohn's patient has the privilege of needing a whole team of doctors!

From 2008 to 2017, I was lucky with my doctor selection. When I was first diagnosed with Crohn's, I was living in my hometown of Los Alamos, New Mexico, a town of 20,000 with one local GI, Dr. Bradley Rowberry (Los Alamos Medical Center). He was my GI for about a year until I decided I wanted to live in California full time.

Upon making that decision in 2009, I set about finding a GI in Thousand Oaks, California. It amazed me how many options there were for GIs in and around the area - I had never had so many choices for doctors! I essentially choose a doctor at random after checking reviews (back then all I had was doctor office websites and healthgrades.com - no Yelp, no Google reviews, no friends with IBD...). I got lucky in my selection of Dr. Gilbert Simoni (Advanced Gastroenterology). He and his office staff elevated my care and had strong knowledge of how to treat Crohn's. I elected to stick with him as my GI, even after I moved to Torrance in the fall of 2010. He was still my doctor when I was hospitalized in 2011 in Torrance, and after I moved to San Diego for grad school at UCSD.

In 2012, Dr. Simoni referred me for a second opinion at Cedar's Sinai in LA. I drove up to LA from San Diego one morning to see Dr. Stephan Targan - I was an hour late due to traffic, despite leaving at 5am. Clearly that wasn't going to work out, but I only had one additional appointment there for a test (more on that later). It was after that that I started taking Humira.

When I was hospitalized in 2013 in San Diego, it became clear that I needed a local GI. I couldn't continue traveling up to LA, let alone Thousand Oaks, to see my GI. While I was in the ICU, one of my nurses was also a Crohn's patient, and recommended Dr. Alissa Speziale at Sharp Reese Stealy. I was able to schedule an appointment with Dr. Speziale quickly (after crying on the phone to the scheduler the day I was released), and quickly knew why the nurse had recommended her. She had incredible bedside manner, and truly cared about my well-being! I continued seeing Dr. Speziale during my time in San Diego until we moved to Phoenix in 2017.

Dr. Speziale was able to refer me to Dr. Shabana Pasha at Mayo Clinic in Arizona; she is a specialist in the exact disease issues I suffer from with Crohn's (that is, inflammation of the small intestine). I saw Dr. Pasha once, then had a follow up with one of her residents... and then moved to Las Vegas.

Let's just say that Las Vegas is not just a climatic desert, but also a doctor desert! There are very few GIs to choose from, and from my experience and the stories of others, I am not impressed by the selection. Any good doctors have terrible office staff - a crucial part of a successful practice. 

Let me paint you a picture: It was my 30th birthday. I had Shingles (because why wouldn't I?), as well as a UTI (again, because why wouldn't I?). I was waiting on my doctor's office and insurance company to approve a medication (Budesonide) that would help me to feel better, after having mistakenly received two half-doses of my main medication (Remicade). I called my insurance company to get an update on the status of  the prior authorization, only to learn that the necessary paperwork had not been submitted a week before, as I had expected.When I called the GI office's prior authorization specialist, she informed me that she had been waiting on the doctor's signature, and that she had just received it, and so would submit the paperwork. Later that day, I was looking at my insurance online account, and discovered that the medication I was trying to get approved didn't need authorization if the doctor prescribed it correctly!

That was the last straw after a string of other mishaps:

• It took 10 weeks for my Remicade to get approved (should have only taken 5-10 business days).
• I received the wrong dose of Remicade (400 mg vs 800 mg). Twice.
• My second doctor's appointment lasted 3 minutes, and the only time the doctor made physical contact with me was to shake my hand. The rest of the appointment was spent by him telling me I couldn't get pregnant without telling him first (mind you, I had not brought up pregnancy or kids with him at all).
• My third doctor's appointment was spent with me asking him to help me feel better due to his prescribing the incorrect dose of Remicade.

After a long, teary conversation with my mom (on my birthday) about what to do, I determined that I needed to go out of state to see a doctor. The only other doctor I would consider seeing in Las Vegas was part of the same practice as my current doctor, and so they shared office staff. I couldn't do that to myself.

My three main options that I was considering were Dr. Simoni in Thousand Oaks, Dr. Pasha in Scottsdale, or Dr. Speziale in San Diego. I elected to go back to Dr. Speziale, easily my favorite doctor, and seeing her would give me the opportunity to go back to San Diego every couple of months! 

So aside from a quality GI, who else is on my medical team?

• Primary - someone who is willing to work with other doctors on the team to coordinate care
• Gynecologist - because lady parts are important and closely connected to the gut
• Dermatologist - because Crohn's patients (especially those on certain medications) are more susceptible to skin cancer
• Hematologist - to address anemia
• Endocrinologist - to check bone density (certain medications can cause bone deterioration)
• Surgeon - someone who can fix you when the medications fail
• Home Health nurse - to administer Remicade via IV
• Pharmacist - to give me the rest of my medications
• Cigna TheraCare specialist - someone from the insurance program for people on specialty medications or with complex diseases

Let's find a cure for Crohn's!Today, I recommitted to participating in the Lake Tahoe Triathlon with Team Challenge on August 26th. You can support my fundraising efforts here.

----

Stay tuned for Part 5: Procedures & Tests