Denouement

December 27, 2024

15% off for Fast Running Blog members at St. George Running Center!

Location:

Kowloon Tong,Hong Kong

Member Since:

Jul 02, 2007

Gender:

Female

Goal Type:

Olympic Trials Qualifier

Running Accomplishments:

Unaided:

5K - 17:11 (track Pre-kids and at BYU) (1998)

10K - 35:48 (track Pre-kids and at BYU) (1998)

10K - 35:34 (road - Shek Mun 10k 12/12)

1/2 Marathon 1:19:44 (UNICEF HM 11/12)

Marathon 2:47:08 (ING Hartford Connecticut 10/10)

Aided:

St. George Marathon 2:50:40 (10/08)

1/2 marathon - Hobble Creek 1:17:14 (8/08)

10K - Deseret News 10K - 35:02 (7/08)

Short-Term Running Goals:

PR 1/2 marathon AGAIN

Long-Term Running Goals:

Break 2:46 in Boston!

Personal:

I used to run for BYU, but only after trying out three times and finally walking on, so I was never a star. However, it was wonderful to run with great people and under Coach Shane. When you run with fast people, you can't help to improve! I graduated BYU in 1998, and didn't run a race until 2002, after having my second child. My hiatus and other crazy life commitments have made my competitive running suffer, but the last couple of years I have tried to get back into it the best I can. I have been married since 1996, to Paul Lowry, who is a runner himself. I have three boys (my three rascals), ages 12, 10, and 8.

After a great 2008 season, I was injured and eventually diagnosed and cross-diagnosed with Ankylosing Spondylitis, a type of arthritis disease, which precludes running for all but the most stubborn. So I am on medications, trying to stay healthy, and seeing my PT often. And running! Now beating the streets in Hong Kong.

Click to donate

to Ukraine's Armed Forces

Miles:	This week:	0.00	Month:	0.00	Year:	0.00
NB RC900 Black/yellow Lifetime Miles:						183.31
NB RC1300 Red/Black Lifetime Miles:						195.31
2012 MTR Lifetime Miles:						4035.70
890 Blue Lifetime Miles:						310.55
NB RC 1600 Lifetime Miles:						96.76
RC 1400 Lifetime Miles:						90.60
NB 890 Baby Blue Lifetime Miles:						233.26
NB 890 Electric Blue Lifetime Miles:						319.67
NB 890 Tokyo Turquoise Lifetime Miles:						163.54

Wed, Jun 17, 2009

Easy Miles	Marathon Pace Miles	Threshold Miles	VO2 Max Miles	Trainer 1 Miles	Trainer 2 Miles	Racer Miles	Total Distance
0.00	0.00	0.00	0.00	0.00	0.00	0.00	0.00

Night pain = 3. Third day in a row of sausage toes (just the sound of that is bad-sorry!).

So for the dwindling numbers who still read my blog, I went to Dr. McLanes.

My culture from my SI joint came back negative for infection.

My blood work I took Monday was positive. It was a HLA-B27 test, I believe, and it was positive for Ankylosing spondylitis, defined in brief by wiki as a chronic, inflammatory arthritis. It affects joints in the spine and the sacroilium in the pelvis, causing eventual fusion of the spine. Its the same "disease" (I guess its a disease?) that Paul Petersen has, so at least our blog has a pioneer in this condition.

I was actually quite relieved to figure out what was going on, though it doesn't totally explain the stress reaction and its worsening, as far as I can tell, in my AS infancy. It does explain why it was so hard to tap my SI joint (my xray today seems to indicate the joint is getting smaller).

I am still digesting the fact that I have a permanent medical condition. I am trying to get an appt with a rheumotologist. I still am trying to get an appt with a neurosurgeon, in case my stress reaction continues its lack of healing.

It's too easy to ask you what band this is--it's a new Green Day song, and is really good:

Do you know what's worth fighting for
When it's not worth dying for?
Does it take your breath away
And you feel yourself suffocating?
Does the pain weigh out the pride?
And you look for a place to hide?
Did someone break your heart inside?
You're in ruins...

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

When you're at the end of the road
And you lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul
Your faith walks on broken glass
And the hangover doesn't pass
Nothing's ever built to last
You're in ruins

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

Did you try to live on your own
When you burned down the house and home?
Did you stand too close to the fire?
Like a liar looking for forgiveness from a stone

When it's time to live and let die
And you can't get another try
Something inside this heart has died
You're in ruins

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

Night Sleep Time: 0.00	Nap Time: 0.00	Total Sleep Time: 0.00	Weight: 0.00

Comments

From MCKENZIE on Thu, Jun 18, 2009 at 10:41:50 from 75.169.130.170

I thought so much about you this morning after I got your message. What now? I guess it's good to finally know and go with that right? Hang in there!!!!

From paul on Thu, Jun 18, 2009 at 10:43:45 from 75.162.109.179

Good lord. I hope for your sake it's a misdiagnosis. There is no blood test for A.S., and HLA-B27 is just a genetic marker that indicates increased risk of A.S. Less than 10% of people with HLA-B27 have A.S. But given your SI problems and x-ray evidence of joint narrowing, combined with the genetic marker...well those things combined can be used for a diagnosis.

Anyway, I know what you mean about conflicting emotions. On one hand it's definitely a sense of relief having a name for the pain. If you can't name it, you can't treat it. It's also good knowing that THIS IS NOT YOUR FAULT. No, you're not being punished for bad training choices or "running too much"; this would have happened anyway. It was a genetic time bomb ticking inside you. Running, if anything, staved it off.

On the other hand, it totally sucks knowing that you have a chronic, auto-immune disease. Yes, it is a disease, although it's not fun to think of it as such.

So the bad news is that if this is what you have, then you have it for life. The good news is that it's treatable, and the last 5-10 years all sorts of amazing new treatment have come available. In the past, A.S. patients only had NSAIDs, which they popped until their stomachs bled. Now we the biologic medications, which are wonder drugs for most, and give many their lives back (including me). Also, the no-starch diet is VERY effective for some (they don't need medication beyond the diet), and somewhat effective for others (like me).

Anyway, I'm sure you are reeling, so I'm not going to throw too much at you. You are in my thoughts and prayers, and I know how hard this is. I hope you can get into a GOOD rheumatologist quickly. There can often be long waits for these doctors. And you will definitely want a strong second opinion, probably from the rheumie. This can get misdiagnosed a lot.

Another bit of good news is that the sooner people catch A.S., the better they respond to treatment. Most people go for a decade or longer without a diagnoses, just thinking it's "back pain" or "in their head" or that "women can't get A.S." (not true, the ratio is about 3:1 or even 2:1, men:women).

Email me if you need anything. Also check out spondylitis.org and kickas.org.

From Eric Day on Thu, Jun 18, 2009 at 10:48:35 from 189.192.158.91

wow Michelle, don't know what to say. But hope that this is at least put under control & you can continue with life & running. Wish you the best.

From allie on Thu, Jun 18, 2009 at 11:21:28 from 208.110.151.113

wow. i am glad you have some answers. my heart goes out to you. this is a tough thing, but you are tougher. all the best michelle.

From Kelli on Thu, Jun 18, 2009 at 11:30:05 from 71.219.76.64

You do not have dwindling number, just know that. You have a huge fan club!!

I will just echo what has been said: I am glad you know what is going on now so you can begin to treat it and move forward, I am glad you have someone you can go to for help (Paul), and I will continue to keep you in my thoughts and prayers.

Running or not, you are amazing! I am going to youtube to listen to that song, not sure if I have ever heard it but it just made me cry.

From Jon on Thu, Jun 18, 2009 at 11:56:54 from 138.64.2.76

Everyone on the blog looks up to Paul and wants to be like him, but you sure took it to a new extreme!

Just kidding. Sorry to hear about this change. Hope it works out ok. You are tough and will come out on top.

On a good note, all this talk about joints and backs is resulting in some different google ads on this page. Rather than seeing even more ads for "Running Singles", I'm now seeing ads for Tempur-pedic beds and Non-surgical back treatments!

From Clay on Thu, Jun 18, 2009 at 12:01:59 from 67.182.209.60

Michelle- I just read your blog and I am truly thinking about you and your difficulty... I think what Paul said is all true, and I would echo the second opinion just to make sure.

Just remember Paul is a living example of the good side of all of this and you will get there too, Let me know if there is anything that I can do.

Hang in there.

From MichelleL on Thu, Jun 18, 2009 at 12:15:05 from 71.35.250.200

Paul - as I read I see you are right about that genetic marker test. However, I am reading your blog re your dx and I see funny things like injuries at insertion points (my hamstring injury at insertion point that wouldn't go away) or like your reference to sausage toes--I have had swollen toes on my right side, sometimes distractingly painful by nighttime, I thought it was just from lack of use, but apparently that can be part of AS too?! I hope I don't have to wait even 4 wks to get in to a rheumlgst, all this waiting is driving me bonkers.

Jon - too true. Paul's a great example and I think I've tried a little to hard to follow in his footsteps. I was chagrined to see that he followed up his blog that he had AS with a scripture and I ended mine with Green Day lyrics, so I guess I have a bit further to go to be like him :/

Kelli- how'd you like it? It's such a great song.

MacK, Eric, Allie and Clay - thank you for your thoughts. It will be a medical trial, but we all get them. I've prayed for answers and I'm getting them, and am grateful for that.

From TylerS on Thu, Jun 18, 2009 at 12:41:53 from 66.29.160.130

Why is there an add for Sciatica on Michelle's blog? Oh well! Michelle I feel so bad for you! When I ran with Rich this morning we talked about you! So many people talk about you and how nice you are. I am glad that you continue to blog, it really helps me a lot. Keep smiling and we look forward to seeing you on the 27th!

From paul on Thu, Jun 18, 2009 at 12:47:31 from 65.103.252.214

Another benefit is that you get to learn all sorts of new words. Inflammation at insertion points = enthesitis. Inflammation of toes = dactylitis. My toes were one of my key diagnostics for my rheumatologist. He said very few things can cause that.

4 weeks to a see a rheumatologist as a new patient is considered good. That why I sometimes refer to mine as "The Wizard of Oz". Yes, I agree that the waiting is excruciating. Tip: write down every question you have, as you think of them. Organize your list of questions before you see the rheumie. You get 30 minutes with this dr., so be as organized as possible, otherwise you'll have to wait for a while to ask your next questions. Your blog will be VERY useful now, as you will be able to go back and get a concrete timeline to describe to the doctor.

From Jon A on Thu, Jun 18, 2009 at 14:25:27 from 67.214.249.195

One of the many fans here, checking in on one of the favorites.

I'm glad you have something to work with now. I think with your determination you will be on top of things fast.

From Cal on Thu, Jun 18, 2009 at 14:33:31 from 66.133.117.3

(FYI, still a fan and supporter)

continued best wishes for you Michelle!

From josse on Thu, Jun 18, 2009 at 14:47:35 from 70.193.165.75

Michelle, I really don't know what to say but You know that I love you and will always be a friend and shoulder to cry on. My prayers are with you and you can always call to vent:)

From Teena on Thu, Jun 18, 2009 at 14:59:06 from 67.177.20.13

Michelle,

I don't know what to say either. I am stunned by everything I just read.

Know that I, like so many others, are thinking about you and wish so badly that there was something that I could do.

Lots of love.

From Smooth on Thu, Jun 18, 2009 at 15:03:03 from 71.32.232.156

Michelle, I check on your blog daily; just didn't have anything helpful to offer. You have a name to the disease now and a "pioneer" in Paul and lots of "shoulders" to lean on. Please know that you are in my prayers. Hope you get to see the rheumatologist real soon.

From The Howling Commando on Thu, Jun 18, 2009 at 15:59:15 from 72.224.24.41

Hey, Michelle. Just wanted to say I'm with you. It is good to know what's up if AS is in fact what you have. I am in shock. I know there's not too much that words can do, but all I can say is "Keep the Faith" and struggle on. Struggle on and Struggle well. You are amazing and wonderful and a true blessing. You have accomplished more than most of us will ever do in our lifetimes. You have 3 gorgeous boys and a wonderful husband! Oh and I read your blog as often as I can! I'm a MichelleL blog junkie! Woot Woot!

From Maurine/Tarzan on Thu, Jun 18, 2009 at 16:08:01 from 63.255.172.2

(((Michelle))) I have not known you for a long time, but I have come to greatly admire you and your dedication and your struggles. I am in tears after reading your post and think how small my problems are in comparison.

You have received a lot of great advice and there are so many tools out there now - Internet research (good and bad), support groups (in addition to FRB), and the scriptures and prayer.

As you mentioned - medical research is advancing greatly and you are in a good position to take advantage of it. I have some friends who have been involved in cancer drug treatments to cure non-cancer diseases and seen my boss struggle with MS. Keep the faith.

Oh - and being an accountant you should be aware of all the rules if we start holding AS Run for the Cure races and send proceeds to you and Paul for medical payments. (I'd sign up in a flash).

From marion on Thu, Jun 18, 2009 at 16:39:12 from 71.213.119.198

Michelle... All of my love to you... What can I do?

Answers are very good :)

The RHPC 1/2 Marathon is now officially called the "Michelle-Lowry's-Pain-in-the-Butt-Ankylosing-Spondylitis-Race-for the-Cure-Water-Proof-Dye-in-da-Blue-Crazy-Nut'n-Gonna-Stop-us-Fun-Lovin'-Red-HOT-Pink-Chicks" 1/2 Marathon.

XOXOXOXOXOXOXOXOXOXOXO

From seeaprilrun on Thu, Jun 18, 2009 at 16:50:57 from 205.172.12.230

I'm a loyal fan of your blog--so sorry to hear the news, and to hear how much pain you've been in. Hopefully you get more answers and some relief soon.

From Maurine/Tarzan on Thu, Jun 18, 2009 at 16:51:10 from 63.255.172.2

Dang - that's going to make the shirts awfully heavy....

From RivertonPaul on Thu, Jun 18, 2009 at 17:02:50 from 67.42.27.114

My heart goes out to you. I hope you can take advantage of Paul P's expertise in this as well.

From Sasha Pachev on Thu, Jun 18, 2009 at 17:24:50 from 64.81.245.109

Congratulations on being diagnosed. Especially with something that we have the experience on the blog.

The question I have - what are the odds that AS would come out enough to be diagnosed in two high mileage runners in such a small group and in nobody else in the same community in a much larger group of lower mileage runners?

From Merri on Thu, Jun 18, 2009 at 17:36:32 from 207.88.76.69

Oh Michelle, I check your blog all the time! My heart goes out to you! You're the toughest girl I know. I will keep you in my prayers! I'm going to go look that song up now too!

From paul on Fri, Jun 19, 2009 at 10:03:52 from 75.162.109.179

lol @ "AS Race for the Cure". Good stuff, I'd support that, although my meds are completely covered.

Sasha - the odds are poor. It's crazy. That said, spondylitis affects about 1 in 500 adults, or about 0.5%. It is about as common as rheumatoid arthritis, and close to as common as MS. (yet, sadly few people have heard of it, which is why it goes undiagnosed so often). If we have 1000 bloggers, statistically speaking 2 should have AS. It just sucks that it has to be Michelle (probably) and I.

I know of only a few other runners who have AS. One guy is a former 3:52-ish 1500m runner in college, but wasn't running that much when he got AS. Another guy I know is a recreational runner. He completed St. George last year (impressive, because he has MS as well). A third guy I know from the Netherlands is about a 1:50 half marathoner.

Anyway, distribution is pretty much random, other than genetic/ethnicity factors. There is certainly some environmental trigger(s), but it could be just about anything in our artificial, toxin-filled world we've created. Many doctors think it starts with some sort of gut infection. But no one really knows.

From marion on Fri, Jun 19, 2009 at 10:10:10 from 71.213.119.198

Paul & Michelle- we added "Sausage toes" to the races name :) It wasn't quite long enough ;)

From Sasha Pachev on Fri, Jun 19, 2009 at 18:55:20 from 64.81.245.109

Paul:

What you and Michelle had in common when this came out was a combination of high mileage and intensity shortly after running a marathon. I wonder if that in combination with something else (certain foods, for example) is a trigger. In any case, it may be a good idea for susceptible runners (e.g joint problems history) to do the HLA-B27 test before they start pushing the mileage so they will know to be cautious. Or even better, if you have joint problem history, assume if you do not have HLA-B27, you have something similar, and take appropriate measures when in the dangerous mileage area.

Also, where is the 1 out 500 number from? If it is out of field blood tests rather than a random sample study, is it adjusted for the fact that somebody without symptoms would not have the test done?

From paul on Fri, Jun 19, 2009 at 19:35:42 from 65.103.252.214

Sasha - I am going to refer you to the article below. It is the best, most up-to-date article summarizing AS I have read so far. In particular, the content under the headings of "The need for early diagnosis...", "Screening for axial spondyloarthritides...", and "Pathogenesis of spondyloarthritis" are relevant to your questions and thoughts.

Lots of $10 words, but I'm confident you can wade your way through it.

http://arthritis-research.com/content/11/1/208

Michelle, you might find it useful too. It is the article that helped convince me to go on anti-TNF medication.

I try not to speculate on causality too much. As the article puts it, there could be "rather ubiquitous environmental factors".

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