Tag-Archive for » ankylosing spondylitis «

March 22nd, 2009 | Author: paul
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I’ll admit it, I have a tendency to to write or say something about training, and then completely go back on it and do something else. Sometimes it will be years later when I change my mind, other times it will be within a matter of days or weeks.

Some examples:  I used to think it was best to keep speed-work days pretty short. Later, I figured out that was the worst thing to do, and adopted doing Big Workouts, where the total mileage for the day is 14-16 miles. I also at one point thought that short intervals were a great workout; later I dropped that idea in favor of long tempos. During the peak of my running, I thought that days off were an opiate for the masses. Now I think they can be necessary to maintain the balance of life.

My most recent flip-flop is that I’ve already bailed on the training plan I outlined in a recent blog post. I had decided that since my body can’t handle high mileage anymore, I would do all hard workouts and a large portion of my total volume on the elliptical machine. I still think the concept was good, but it turns out that pragmatism was lacking.

In a nutshell, I hated it. After three weeks of going to the gym every morning, dripping sweat all over the elliptical machine, and, yes, getting some great workouts in, I had the following revelation. I am a runner. I run so that I can run…longer and faster. I run because I enjoy the feeling of running. I run because running is intrinsically good. When I replaced running with elliptical, training ceased to be enjoyable, and I very quickly lost all motivation. My end-goals were the same as before: racing. But the process of getting there had changed, and it turned out that the process is as important as the result. I found out that if I destroy the process and replace it with something else, I no longer want the result, and I quit altogether.

It was an interesting little journey, and I’m okay with the results. So the little cross-training experiment failed, big deal. I am now back to running every day. And I’m happy. Spring is here, the weather is beautiful, and it’s great to be alive, get outside everyday, and run. My training is not terribly structured right now, but I get a little tempo once a week or so, throw in some doubles when I’m motivated, and now I’m actually starting to feel the hints of fitness, much like how my lawn is showing hints of green. Perhaps in a few weeks or few months that hint will bloom into the real thing.

My body is holding up fairly well. After much deliberation, research, and consultation, I decided to start Enbrel, a biologic medication that treats Ankylosing Spondylitis (A.S.) and other auto-immune diseases by dampening the immune system and stopping inflammation before it even happens. It can actually slow or halt disease progression, opposed to NSAIDs, which treat only the symptoms (similar to putting a band-aid over a gaping wound).

After two weeks of Enbrel, I am not pain-free, but my hamstring tendons have improved greatly, my knee pain/stiffness has subsided, my hip pain has vanished, and my feet are “good enough”. A fair amount of foot pain and back stiffness remain, but it is tolerable. So I am encouraged by the early results, especially since it usually takes several weeks or months to realize the full effects of the medication.

The main downside to Enbrel or any other drug in its class is that it makes me more susceptible to getting sick. As a trade-off to eliminating pain and inflammation, I must now carefully monitor my health and my actions, which includes not to over-exerting myself. In other words, even if Enbrel forces the A.S. into remission, it’s not a free pass for me to run like crazy and do the kind of mileage I did before. Training 100+ miles/week often straddled the thin line between brilliant performance and crashing with sickness, fatigue, or injury; it’s truly a strain on the body no matter who you are.

That said, I am optimistic about training and racing. In the past, 70 or even 80 miles per week was pretty easy on my body, and I think I could handle that without compromising my immune system. But there is still a long way to go to even work myself up to that point. For now I am content to enjoy the spring and a fresh start on running. Mileage and performance are not in the forefront of my mind, but I’d be lying if I said I never thought about it.

But my current goals all revolve around the present and near-future, and I am not looking past May. I am running the Striders Half Marathon in Ogden in early April, mostly as a tuneup and exploratory race for the Indy Mini. Striders is a good course and a fun race, one that I’ve won before. I look forward to revisiting it and seeing how close I can get to my previous times. Four weeks later I will have the Indy Mini, and then beyond that I have no idea! In any case, I hope to have a fun spring and summer with running, and perhaps try a few races I have never done before. Happy training everyone.

February 05th, 2009 | Author: paul
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A couple years ago, I thought I had it all figured out. Marathon training was simple: just do 2 big workouts per week (15+ miles), an easy long run, and fill the rest of the days with easy doubles until I hit 100+ miles for the week. It was a formula that took my marathon time down from above 2:30 to under 2:20. And I expected it to work into the future.

Getting hit with ankylosing spondylitis (A.S.) has changed everything. My body’s old limits are no longer valid, and the disease has imposed on me new limits. Through trial and error (most error), I’ve figured out that if I go over 50-60 miles/week, I start to break down. Mostly it’s the tendon injuries that sideline me.

 

I had been holding out hope that I would be able to at some point resume my old high-mileage training, and get back to marathons. But just recently I’ve finally accepted the fact that A.S. and marathoning don’t mix, and my condition will likely prevent me from ever running how I used to again. Yes, it was a bit of a sad realization, but it was actually more liberating than anything. Once I accepted that as a fact, I felt like a weight had lifted off my shoulders, and I was free to look at and pursue running from a different perspective. The pressure of being what I once was is gone, and now I can look forward to running becoming something new.

Clearly hard marathon training is now out of the question, but I had proven this past year that I could still successfully train for and run quality races at the 5K through half marathon distance. So that is where my focus will now lie. If anything, it’s getting back to my roots, as I was a 5K/10K specialist long before I had even dreamed of running a marathon. I’m excited at the prospect of the shorter distances, of different types of training, and of potentially even setting new PR’s that I’ve neglected over the last several years.

So in essence I need to relearn how to train. I had figured out marathon training, but now I need to figure out 5K/10K training, and specialize it for running with A.S. with the training load I can handle. For now, the centerpiece of my training will not be running, but the elliptical machine. I’ve found over the last year that it is possible to get an excellent workout on the elliptical, and my heart rate elevates to levels similar to running while on the machine. When I push hard on the elliptical, I often get my HR up to near 180, which is 90% of my max. Seems good enough for most types of training!

My new staple elliptical workouts are 10×3-minutes hard, with 1-minute recovery, and 2×15-minutes hard, with 5 minutes recovery. These are designed to simulate CV and MP workouts. As I get stronger on the elliptical, I plan to extend the time of the “tempos”.

Perhaps the best aspect of cross training is that since there is no pounding, I can recover faster and work out more frequently. Rather than doing 2 hard workouts per week, I will be able to do 3 hard workouts per week. I firmly believe that I can achieve a high state of fitness from cross training like this, and that it will translate to good races.

Of course I will need to run too, but for now I’m just doing 2-3 miles/day on the weekdays, and a 9-miler or so on Saturday. Once the weather warms up, the snow melts, and I get more daylight to work with, I’ll add a second 4-5 mile run with the jogging stroller in the evenings after work. Adding doubles will give a total running volume of 45-50 miles/week, along with a cross training volume about 5 hours/week. This cross training volume I convert to 30 “miles”, based on the approximation of 10 minutes on elliptical = 1 mile running (Jack Daniels suggests 1 unit of cross training = 2/3 unit of running) . So the end result will give me up to 80 “miles” per week of total training volume, which is certainly sufficient to run some nice 5K/10K/half marathon races.

Time to pick up Daniels Running Formula again.

Some of you readers (assuming I still have readers) may wonder, why isn’t 70-80 miles/week good enough to run a marathon? Simple: I’m not doing any long runs or big workouts. Everything is short and sweet. A huge part of marathon-specific training is geared to adapt the body to handle of pounding and fueling of a race longer than two hours. It is that type of training I’ve determined I can no longer handle. No more 20-milers, no more huge tempo runs or interval workouts, no more runs over 60 minutes in duration. Dropping those kinds of runs, I believe, will keep me healthier, but they will also prohibit me from really doing any race longer than a Half.

So marathons are out, but other races are in. And I’m excited about it. I feel like it’s a fresh start and a new challenge. And is this to say I won’t ever run a marathon again? No, it’s just saying that I won’t ever train for a marathon…in the near future. I could easily see myself taking this training plan, adding one longer run (16-18 miles), and then jumping in a marathon for fun. But it would have to come at the end of the season, and would have to be dialed back with lowered expectations.

But who knows what the future will really bring? I’m just grateful for everyday out there I have to run and be active. I look forward to trying to PR at the Indy Mini Marathon in May, and to perhaps running the USATF LDR Circuit again this summer.

February 02nd, 2009 | Author: paul
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Note and disclaimer: I am not a doctor. I am not associated with Padma Basic or Euconugenics. I am just a guy with ankylosing spondylitis, trying to find any and all treatments that can help control the disease. My statements below are not authoritative, but rather reflect my own experiences with Padma Basic, and nothing more. Please consult a rheumatologist when implementing any change of treatment to your own disease.

Well, it’s been a month since my Part 1 Review on Padma Basic. I have finished my supply of the product, meaning I’ve been taking 6 tablets/day for 30 days in an attempt to suppress my ankylosing spondylitis. Time to discuss results.

Frankly, for the first three weeks I experienced no change whatsoever. I wasn’t exactly disappointed with this, as my expectations were not that high to begin with (given my lack of faith in alternative therapies). However, during the final seven days of using Padma, my neck and shoulders became noticeably less painful and stiff, especially in the morning. Pain levels went from about a “3″ to a “1″ or even “0.5″.

At the same time, pain and inflammation in my feet and toes subsided somewhat, probably from a “3″ to a “2″. I experienced no change in my lower back or my bothersome left hip. I also noticed no change in my chronically cold hands while running outside.

So it’s safe to say that results were mixed. Yes, my neck feels better right now, so it could be because of the Padma, or it could just be the natural ebb and flow of my ankylosing spondylitis. Simply put, with A.S. some days are better than others, and some weeks are better than others. My final week of taking Padma was certainly a “good” week.

My own conclusion: I will not continue taking Padma, simply because I can’t afford the $85-$100/month pricetag, and the results weren’t sufficient to justify the price. That’s still a lot of money in my world for something that is not proven to work (especially in today’s economy). Fortunately or unfortunately (depending on your view), prescription medication combined with insurance costs much less, and is proven to be effective. Even the biologic medications, such as Remicade and Enbrel, can often be obtained with less than $100/month, with insurance and financial aid from the respective drug company.

But to bring up the biologic drugs brings up a reason to try Padma Basic or Padma 28: through my own experience or through my literature review, I have not found any discernable side effects. Many side effects of the immuno-suppressant drugs or NSAIDs are downright scary. With Padma, I experienced no gastro-intestinal discomfort, no orange skin, no sensitivity to sunlight, no compromised immune system. This all observational; I did not have any testing done (liver, kidneys, etc.), so please take my lack of perceived side effects for what it’s worth. I also encourage readers to go through the literature review and links from my first posting; I have yet to see mention of side effects from the studies I’ve looked at, but that does not mean that don’t exist. So in a nutshell, my own experiences were positive, but please be responsible and be cautious when trying any new medication or any especially any non-FDA regulated supplement.

But pushing aside side effects (or lack thereof), Padma’s benefits to me were subtle at best. Perhaps Padma could be a viable option for people with very mild auto-immune diseases. Also, I think to truly test Padma better than I just did, a person would have to use it for 6-12 months. One month was probably not long enough to get the full effects. But then again, most of us with ankylosing spondylitis simply do not have 6-12 months to fool around, as permanent joint damage can occur in that kind of time frame. That is reason enough to go with a form of proven medication prescribed by a rheumatologist as front-line treatment; there is simply too much at stake to bank on an alternative therapy as the main treatment.

So to summarize, I took Padma Basic for 30 days to help suppress ankylosing spondylitis. I found:

  • No side effects
  • A small but noticeable reduction in neck/shoulder pain and stiffness
  • A very small reduction in foot/toe pain
  • No change in lower back/hip pain and stiffness
  • Not convinced that improvements were necessarily directly from Padma
  • Found the cost prohibitive
  • Feel that a longer term of use would be more conclusive

I would love to see some real studies done with Padma Basic/28 on various auto-immune arthritis’s. How does it really compare to the anti-TNF drugs? Let’s see some real numbers, double-blind trials, and other methods that will hold up under scrutiny.

I would also love to hear back anecdotally from other people who use Padma to inhibit TNF and control rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, Chron’s disease, and others. Does it work for you? Please leave your comments, questions, and experiences. I hope this blog can be used as a resource for auto-immune sufferers who are investigating Padma and looking for real-life experiences about it.

January 04th, 2009 | Author: paul
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Note and disclaimer: I am not a doctor. I am not associated with Padma Basic or Euconugenics. I am just a guy with ankylosing spondylitis, trying to find any and all treatments that can help control the disease. My statements below are not authoritative, but rather reflect my own experiences with Padma Basic, and nothing more. Please consult a rheumatologist when implementing any change of treatment to your own disease. 

As those who read my blog know, I’m been dealing with an auto-immune disease called Anklyosing Spondylitis (A.S.). In a nutshell, A.S. incites my body’s immune system to attack my own cells and cause inflammation, most notably in the lower back, hips/SI, and neck. These are all distinguishing markers for A.S. In addition, it has also caused swelling and painful inflammation in my toe joints, as well as a variety of tendon-related injuries.

And reportedly it only gets worse over time. This is certainly bad news for a 29-year-old guy like myself, supposedly entering my physical prime. It almost makes it worse being a competitive runner. I felt like I was finally coming into my own and making real progress as a marathoner over the past couple years. The 2:18:09 at St. George and 2:22:34 at the Olympic Trials four weeks later were real high points, and I felt like I had the ability to break 2:18:00 or even 2:16:00 on an unaided course. All I needed was time and continuity of training.

When the A.S. diagnoses was revealed, a lot of my hopes went down the drain. But I did keep a mere fragment of hope: If I could find a way to control the A.S. (and the tendon injuries that go along with it), then I would be able to resume training at an elite level, find my body’s true limits, and achieve my goals. Thus began my search for the treatment(s) that would work for me. I am open-minded: drugs, diets, herbal remedies…my main interest is in finding something that works.

Do date, the most effective treatment I’ve tried (and still use) is simply NSAIDs. Meloxicam has been effective in reducing pain and stiffness, and has not caused any gastrointestinal damage (yet). I take the tummy-protector Omeprazole to reduce acid and help out my gut with the NSAIDs. Also, I am doing the No Starch Diet (NSD), which supposedly reduces disease activity through eliminating all starches (wheat, rice, potatoes, legumes, processed foods, etc.). NSD indeed has helped dial back my pain levels by a couple points, but so far has not been a panacea. Right now, I view it to as a complement to traditional drug treatment, and not the primary treatment in itself.

I have also tried fish oil, ultrasound, and various supplements. They all basically did nothing other than make me wary of alternative treatments and throwing my money away. With NSAIDs plus NSD, my pain levels most days are around a “2″. I have daily stiffness in my neck, and intermittent stiffness in my lower back. My left foot has been constantly inflamed and sore for the past year, and I have experienced numerous tendon-related injuries. I am doing “okay”, but would like to do “better”…and I would also like to reduce the amount of NSAIDs I need to take, in order to preserve the long-term health of my gut.

So that is a rather long intro, but it lays the foundation that:

  1. I suffer from A.S.
  2. I have several ways to treat A.S., none of which are perfect
  3. I am constantly looking for new treatments to try. Anything that can take off a point or more of pain and inflammation levels is worth trying, especially if there are no side effects.

A couple months ago I read a press release on the Spondylitis Association of America (SAA) website. It was about an herbal supplement called Padma Basic. The press release stated:

First, we look at an “exotic supplement” called “Padma Basic”. The “Dear Pharmacist” column in Tulsa World reports, “It works for rheumatoid arthritis by calming an overactive immune system that is bent on destroying cartilage and bone. The destruction occurs thanks to TNF (tumor necrosis factor), which signals the attack. Padma contains an herb “Pterocarpus santalinus,” which inhibits TNF and T-cell proliferation in a similar way to prescription drugs like Humira, Remicade and Enbrel. It could improve inflammatory conditions among them, Crohn’s disease, MS, rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis.” 

Whoa! That’s an eye-catcher to me! The release states that the herb has potential to inhibit TNF (and therefore slow or halt A.S.) similar to the very powerful biologic drugs available. These biologic drugs work very well, but they have many side effects and are very, very expensive. The press statement gave me a great interest in Padma Basic, so I started googling for anything I could find on it.

Padma is an ancient Tibetan herbal formula manufactured by Padma, Inc. in Switzerland under international pharmaceutical standards. It is sold in Europe as an OTC drug known as “Padma 28″, but in the U.S. it is distributed by EcoNugenics as a herbal supplement not regulated by the FDA. The only difference between Padma Basic and Padma 28 (beside their name) is the presence of 1 mg/tablet of aconite in Padma 28. This does not really affect the formula, and the function between the two is exactly the same.

With my wariness of herbal supplements in mind, I needed to be convinced to even try Padma Basic. But as it turns out, quite a body of objective research exists that validates using Padma for a variety of applications and ailments, including:

I perused many of these journal articles (see links for yourself), and became even more interested. Although there was nothing directly studying the effects of Padma Basic/28 on ankylosing spondylitis, there were indeed many studies that indirectly stated that it could help in a variety of ways, including reducing inflammation, improving circulation, and inhibiting TNF.

The results of the Bernacka et al. (1991) study on juvenile rheumatoid arthritis, published in the Journal of Imunotherapy, were particularly encouraging to me. The group of children who were given Padma improved in both symptoms and laboratory tests without side effects during the six-month clinical trial. It was a very small study, but enough to stir more interest and hope in me that Padma can help dampen my overactive immune system.

So I believe it is worth a try. I plan to take Padma Basic for 30 days, and report my findings in a full review on this blog. Of course I have no delusion that this is some sort study; rather, it is merely my own personal experiences with Padma. Everyone’s form of A.S. is different, and different treatments will help different people. But my goal is that through this review and the followup review that other A.S. sufferers can find pertinent information, and be exposed to the option of Padma.

The kind people at EcoNugenics were gracious enough to supply me with a 180-tablet supply of Padma Basic. It arrived yesterday (January 2nd), and I have begun to take it. My dosage is two tablets 30 minutes before each meal (6 tablets/day). I am still taking meloxicam and omeprazole, and will continue to do so unless my pain drops down to a 0 or 1.

I plan to be as objective as possible when reporting the effects of Padma. My hopes are that it will:

  1. Reduce or eliminate stiffness in my neck
  2. Reduce the pain and swelling my left foot
  3. Allow me to take fewer NSAIDs
  4. Help the circulation of my hands and feet, which are constantly cold

So come back in 30 days for a full report of results!

October 02nd, 2008 | Author: paul
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Oops, I did it again. During my Monday tempo run, a slight pain in my lower shin transformed into inflamed, swollen mess. Why did I bother finishing the workout? Why not just jog it in? Did I seriously think it would just “go away”? Well, apparently I did. D’oh!

Regardless of my delusions and mistakes, I am left with what appears to be a moderate case of tendinitis in my shin. I’ve had tendinitis in my upper hamstring before, and it was not fun. But this already seems to be way better than my hamstring injury, or the groin strain I had a couple years back. It seems that injuries that occur higher up take longer to heal (groin, hamstring, etc.). Walking with this shin injury is not too bad, and I can already run a little bit after only a couple days. With the hamstring and groin injuries, it was a couple months before I could run.

So how to treat this? The past two days I have been religiously:

  • Icing, with both stationary ice packs and with ice massage.
  • Scraping, with Gua Sha tools.
  • Massaging, by just putting some oil on my shin, and then using deep strokes with my thumbs from the top of my shin down to my foot.
  • using my TENs unit, a little device that reduces pain and perhaps increases circulation through electrical pulses.

On Sunday, I am seeing my massage therapist, and hopefully she can work some magic. Also, I’ve ordered a Zensah compression sock. I don’t know how much compression will help, but it’s worth a shot. Anything that allows returning to running without re-injury is a good thing.

My worst fear is missing The Other Half, or just limping through it. I figure I can supplement a full week of training with cross-training and still run at full potential in Moab. If I miss two weeks, I could probably still run so-so at Moab, but would miss too much “real” training to continue entertaining ideas of a December marathon. Basically, I would be done for the year after the half marathon. If I miss three weeks or longer, then Moab will become just a vacation, and I’ll have to be happy with the three races I was able to run this year.

But I am optimistic. In order to keep fit and keep my edge for the upcoming half marathon, I’m trying to get an hour of cross training in every day, and will attempt some interval and tempo type workouts as well. For cross training, I use my mountain bike, the elliptical machine, and the arc trainer machine. The arc trainer in particular is a fantastic workout. I get gassed on it after about 10 minutes. But nothing beats running.

The question I always ask myself when I get an injury: is if it is purely a running injury, or if it is because my Ankylosing Spondylitis? A.S. has a tendency to attack muscle insertion points, thus A.S. sufferers are more prone to “injuries” such as plantar fasciitis and tendinitis. In my case, yes, I think there is a good chance that A.S. set the stage for this bout of tendinitis, but if I were not a runner it would certainly not be inflamed to its current extent. So the two work together as a one-two punch. A.S. weakens the tendons, and running blows them up. I imagine this is just something I will have to deal with as long as I run.

New rule: if I feel any sort of new pain, I abandon the workout. This a basically a repeat of my hamstring tendinitis from earlier this year, so strike two on me.

September 11th, 2008 | Author: paul
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Back in June I thought this year for racing would be a complete wash. In fact, I did not know if I would ever run competitively again, due to the plethora of arthritic ailments brought on by Ankylosing Spondylitis (A.S.).Fortunately, things have turned around for me a bit, to where I’ve been able to run again, and even get into some semblance of shape.  I am not pain-free yet, but am “good enough” to train and do some speed work too. My key challenge was to learn how to manage the A.S., which I have done so far through diet and occasional use of the NSAID meloxicam. Right now I am taking 2-3 meloxicam (brand name: Mobic) per week, and that is enough to make me feel pretty good when I get out of bed in the morning.

Thanks to eliminating all starch in my diet (the “No Starch Diet”, which will be a blog topic of its own soon), the pain in my hip, SI joints, and low back stiffness have basically disappeared. The swelling in my foot and stiffness in my neck (particularly in the mornings) is all that remains, and that is what I take the meloxicam for. If the diet continues to work over time, I hope to eliminate all NSAID use completely.  But for now I’m thankful that I’m taking it a few times per week rather than everyday. I’m sure my stomach will thank me as well.

So despite a horrid first half of the year, I’ve been salvaging a short racing season after all.  I’m not nearly in the form I was last year, but I’m still having a lot of fun, and thankful to God for the opportunity to run again. On August 2nd, I ran a local 10K (for $5!), and placed 3rd with a time of 34:55. I was quite happy with this considering that I had about a month’s worth of training at 30 miles/week at this point (plus the birth of my first child three days prior).

My second race of the year was August 23rd, the Top of Utah Half Marathon. I won this last year, so it was a little humbling to be completely out of contention, but I still enjoyed myself immensely, taking 6th overall with a time of 1:12:12.  Mileage was around 50 mpw at this point, with some speed work.

After a week of recovery from the half marathon, and then missing some time due to sickness the following week, I’ve finally boosted my mileage again, and will be sitting around 65 mpw for awhile. I’ve managed to catch a little bit of the old fire, and have the desire to train again, and to excel in races. This fire had been missing for awhile. I’ll reach 75-80 mpw in the next couple months, which I never thought I’d would even want to do again.

Upcoming races include the Top of Utah 5K on September 20th, The Other Half on October 19th, and another local 5K (The First Dam Run) on November 1st. The Other Half is a half marathon in Moab, and is a fairly big race. It is a challenging, rolling course, with no elevation drop (rare for Utah). The course record is a low 1:12, and I’ve made it my “season goal” to break that record. If I can run 1:12 or faster on that hard course, and if I am reasonably pain-free, then I will consider continuing to up my mileage and running an early December sea-level marathon, most likely St. Jude.

Several people have tried to convince me to run St. George, but I am not for several reasons:

  1. I have nothing left to accomplish there, other than to win. I cannot win this year with the training I have done. Therefore I will not traumatize my body for no good reason.
  2. The injury risk is too high on that course with the amount of training I’ve done.
  3. By deferring a marathon for two months (December vs. October), I will give myself training time to race a much better quality marathon.  True, I could probably break 2:30 in my current condition at St. George, but I gain more by training longer (uninterrupted), and running under 2:25 on an honest course like St. Jude.

Much of this is speculation right now, but that is where my thinking and heart are at. St. George was tempting simply because I really enjoy being at the race with my friends and peers. But to actually race it would be a bad idea. Plus, I’ve always wanted to run The Other Half, which is reportedly a beautiful, challenging course.

I do not know what the future will bring, but I have enjoyed the races I’ve been blessed with doing already, and look forward to running more.