Thoughts on Cross Training: the Cybex Arc Trainer

Thanks for the good wishes for my sister TiffeeG, readers!  I am happy to report that she made it through the ablation with no hiccups.  The doctor only did one side (she will have the other side done next week.)  I took my divine pumpkin bread and my booze tree over and stayed with her and my nephew Friday night, because my brother-in-law had to take my niece out of town to a basketball tournament.  We watched an old classic…Better Off Dead!

Luckily, she is a proud member of Team Vicodin and also can take a nip from the booze tree as needed…

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I had a great 5-mile run in beautiful weather on Saturday, though I left Oscar the running coach at home.  I have a little soreness in my back and tightness in my left calf that I blame on him (I think he forces me to heel strike and brace myself a bit because of the force of him pulling on me.)  I think I will adjust over time, but I decided to take it easy and just be able to zone out a bit (something I can’t do with him, since I have to be on squirrel/bird/rabbit alert!)

Yesterday I went to the gym with HH and mixed up a little strength training with 20 minutes on a Cybex Arc Trainer.  I loved that thing!  I have to admit that since moving back from Switzerland over a year ago, I haven’t been able to find my cross training niche.  I did CrossFit for about two years there, which I loved, but which I was ready to be done with.  I ramped up my running with marathon training after moving here, and I let cross training slide (I’m not saying it was smart, just that it’s what I did.)

I would really like to bring strength training and some sort of cardio cross training back into my workout mix, because I know it will help with weight creep (I can’t expect to do nothing but run and keep weight off, and I know it) and also with my running.

I’ve just struggled with finding what I want to do.  I have issues with gyms (the main issue being that I get bored in them and want to be outside) and I hate bikes/ellipticals.  The elliptical in particular makes me want to puke.  I hate it. 

Did I mention that I hate it? 🙂

So I was surprised at how much I loved the Arc Trainer.  The motion is zero impact, but so similar to running and not annoying like the elliptical.  And as a bonus, this morning I felt soreness in my legs (the right kind!), so I know it was a little bit of variety.

I want to come up with a program for the next few months involving running 5 days a week, 1 day a week on the Arc Trainer, and at least two days of strength training and yoga (I’ve never done yoga, but want to start working on flexibility.)  I’ll keep you posted…it sounds like too much of a time commitment when I write it down like that.  Hmmm….

Hope your weekend was awesome!

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Stretch, Eat, Love

Thanks so much for the comments and positive feedback on my last post!  I’m glad to see Joy Johnson’s story inspire so many of us!

That post, along with a few others, have led to an increase in followers…yay!  With added readers comes added responsibility, though…I wonder what people want to read about, and I want to make everyone happy.  Do you want to know only about my running, or are you also interested in the other things that make me a very special (read: quirky) flower?  Are you an experienced runner or a beginner?  Maybe you don’t run, and you just think I’m hilarious (thanks, Mom, Dad, and sister!).

I’m going to make it easy for you today:  I’m separating this post into two sections.  One deals with running, the other deals with life and includes a bangin’ recipe for runners that anyone with a taste bud should love!

On to the good stuff…

Running

Oscar the running coach thinks I need to lose five pounds by Christmas…

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Now, I’d love to be one of those carefree sorts that hops right into her running clothes and hits the door, but that just isn’t me.  As HH (Handsome Husband for new readers) likes to say, it’s a fing space shuttle launch for me to get out the door.  Music, clothes, timing food, timing the bathroom, it all matters.  The most important part, though, is the stretching.

Do you stretch before a run?  Do you wonder if you should?  The controversy goes back and forth, and the current view is NOT to stretch before runs (for example, see this article on Runner’s World, and there’s lots more where that came from.)  Most experts recommend not doing any static or intense stretching but rather to do some dynamic stretching moves.

I can’t run without stretching before, and I don’t run without walking a few minutes first.  I have a lovely routine that I do every time I’m ready to leave the house, but I’m careful not to over-stretch or push my muscles to the point of pain.  I keep it mild, and I keep moving, rarely holding a stretch for more than a second or so.

I stretch my arms, waving big circles forward and back.  I stretch my shoulders and neck, constantly moving, trying to just wake everything up and get out some tension (I’m 40, and things ain’t what they used to be, folks!)  I put my hands on my hips with my feet planted far apart and do a big hula hoop motion in both directions.  It’s pretty nerdy.

Then I work on my legs and ass.  I love this recent video by Runner’s World, and I do these stretches before every run (the pike position is especially great for my plantar fasciitis because it really stretches the foot out.)

(Full disclaimer: My butt kicks don’t look as dorky as the chick’s in the video)

I finish up with some standing quad stretches, and then (finally!) am out the door.

Also, I’m a terrible person and don’t really stretch after.  Sure, I’ll touch my toes a few times, and if I feel my PF or hamstrings tightening up throughout the rest of the day, I’ll randomly stretch, but nothing too much.  I’m such a rebel.

I would love to hear feedback from other runners.  Do you stretch before, after, or not at all?  Do you walk to warm up or just hit the ground running?

What I’m running to:  Darling Nikki by Prince (this song is a good reminder to me as the mom of a 14- and 11- year old that Tipper Gore was wrong and naughty lyrics aren’t the devil, since this was my favorite song in 7th grade and I turned out to be a huge prude), The Wire by Haim (so fun!  Great for being dragged down the street by an insane dog, and the beat will make you think of Heartache Tonight by the Eagles.)

Life in General

First, NaNoWriMo.  I should be 10,000 words in, and I’m barely over 2,000.  Basically, I’m batting .200.  

Have you ever seen Meet the Parents?  Remember that scene where Ben Stiller mimics the act of milking a cat?

That’s what I think of when I try to squeeze words out of my brain.  I’ll keep you posted.

Ok, so now I get serious for a second.  If you’re a long-term reader, you know that I started this blog to chronicle my training for my first marathon and raise money for my sister TiffeeG’s disease, Ankylosing Spondylitis.  Well, TiffeeG is having a procedure tomorrow called a RadioFrequency Neurotomy or Ablation.  

Basically, (brace yourself) the doctor is going to burn the nerve endings coming out of her sacroiliac joints (in the lower back) to try and kill the nerves so that her brain doesn’t feel the pain.  If all goes well, the nerve endings will fry (die, devil nerves!) and stay that way for 10-14 months until they eventually regenerate.

Sounds like fun, huh?  I am praying that it works, and that the pain of the procedure itself is bearable.  I don’t know what they do to help her with the pain of the injections and burning process, but when the doctor warns you that you will think he’s the son of Satan by the time it’s over, I tend to think the worst.  In the past month leading up to this decision, the doctor has injected steroids directly into the joints (in six different places) and also injected anesthetic into the same areas for diagnostic purposes.  Imagine six injections into the base of your spine, into an area that hurts so bad and is so inflamed that you can hardly bear touch and can barely lay on the table in the necessary position.

Not good.  

What do you bring the sister who just had back nerves fried?  I’m thinking Pumpkin Bread and a Booze Tree.  Here are the details…

This Pumpkin Chocolate Chip Bread is from Runner’s World (several years back.)  It is MAGNIFICENT!  I make two modifications to the original recipe…I only use 1 cup of mini chocolate chips, and I use Splenda Sugar Blend for Baking instead of real sugar (3 cups?  Seriously?  Yikes!)

It makes two loaves (bonus!), freezes well, and doesn’t require using an electric mixer (yes, I’m that lazy.)  My kids eat this and are almost convinced that their mom can bake (kids are so easily fooled.  I can barely boil an egg.)

The Booze Tree is a work in progress, and I’ll be sure to show pics when it’s done.  I went to Michael’s and bought a Christmas tree with six little votive candleholders on it.  I’m going to fill them with travel-sized bottles of booze.  Clever, no?  If I could get my hands on high-level narcotics, I’d go that route, but this seems to be the next best thing.

Thanks for reading!

 

 

 

Random Thoughts on a Tuesday

My good mood last Friday carried right through my 13-mile run.  Everything synced up–my mood, the weather, my lungs and my legs…it felt great, and I coasted right through with an easy 10:17 average pace and little or no soreness afterward.

This week’s schedule is fairly easy to start, with 5-mile runs yesterday, today and tomorrow, but then Hal Higdon lowers the boom with a killer 19-mile run on Friday.

Gulp.

My 18-miler was such a disaster…I’ve barely recovered from the mental and physical nightmare.  I still have flashbacks of me wanting to beat down that sweet old lady shoveling her driveway.  It’s like ‘Nam.

Still, if I’m going to run 26.2, I have to run 19 (genius thinking, I know!), so there’s no avoiding it.  I wish I still lived in Switzerland and could do the run there.  Talk about eye candy!  The running I did there was the most memorable of my life.  I could easily get lost in my runs…couldn’t you?ImageImageImageImageImageImageImageImageImage

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To be there again and run 19 miles through those beautiful villages would be a dream.  Alas, I am here in the Midwest and will just have to run through the neighborhoods.

The weather is supposed to be around 70 degrees that day, which will be quite a jump from the cold temps I have been running in these past few weeks–too much of a jump, perhaps.  I can’t wait to break out the tank and the ol’ compression shorts, but I am fairly certain that I will have to make some pit stops at the house for more water and G2 in order to deal with the heat.

I am hoping that the coming spring and warmer temperatures will bring some relief for TiffeeG.  The cold is so painful for people with arthritis, and it is pure hell for AS sufferers.  When my sister gets cold, it’s like it opens up a direct path and lets the pain burrow deeper into her joints.  

She described the pain of AS to me recently as “floating,” and that makes perfect sense to me.  It’s always there attacking her body, and it never leaves the sacroiliac area (the hallmark of the disease), but it floats around and causes terrible pain in different areas at different times.  Though the cortisone shots in the back of her neck helped back in the fall, the inflammation is coming back to that area now.  She can feel it moving back into her neck and shoulders, and even her jaw.  On top of the degenerative disc disease that’s already present in her neck, when the AS settles in there it’s almost unbearable.

That’s the pain that sent her to the emergency room in the fall–finally seeking more help when the pain reached a 9/10.  That’s the face I saw, before she saw me and tried to cover it up, curled up in a bed in the back of the ER.  It was a look I’ll never forget, and it was a look of pure pain and despair.  I still remember that look sometimes when I run.  It inspires me to do more with my health, to try and appreciate it more and use it for a purpose beyond my own silly ego-inflating goals.

I got a marvelous shout-out from an AS sufferer, Joyce, who writes a terrific blog on AS, including weekly updates on AS in the news (here).  I appreciated the mention, but then felt bad that AS sufferers might come check out my blog and see me blathering on about how much my 18-mile run “hurt” and how my foot is on ice!  I’m worried that it sounds so silly to someone who is in chronic pain.  I often feel that way for my sister too, who listens to me ramble on about my running while wrapped in a heated shawl with her Vicodin and Ambien on tap just to be able to sleep through the night.

It’s a difficult balance.  Still, the journey to a marathon is a story for any runner, and I hope that by sharing my story with you (my incontinence pad cut me!  I thought my hydration belt was an attacker and I started flailing and kicking at myself on a crowded street!), you will be entertained.

If you don’t have AS, I hope that I will convince you to read up on it so that you are aware of the signs and symptoms.  And if you suffer from AS and stumble across this blog, then I hope that you know that I pray for you along with my sister every night.  I hope to raise as much money as I can for the Spondylitis Association of America before my run next month.  I hope you might read some of my silly stories and thoughts on running and know that I am thinking of you and praying for better health and days ahead.

I’m off for a quick 5-miler.  Bring it on!

 

Work It Out Wednesday: New Hope and Old Demons

“You take the good, you take the bad, you take them both and then you have…” today’s post (and lingering images of Jo and Tootie.  Was anyone else annoyed by Tootie like I was?  She was so darn annoying).  I have both good news and bad to report…

Always start with the good, I say!  TiffeeG made it through her first Remicade session.  As it turns out, they treat the patients in a small room lined up right next to each other with no room for anyone else, so Mitch had to sit out in the waiting room…entertainment enough for Tiff and me, since Mitchie “doesn’t do” sick people and was in misery out there surrounded by the old and infirm.

The nurse kicked things off with a lovely warning that if her throat started to close up, she should signal immediately.  Um, sure.  Great.  You can pretty much count on that, lady! I got a great text from her partway through…she got stuck sitting next to a woman who kept bragging that she had spent 8k on a custom-built machine gun and shotgun and ranting about the guy in Florida who chewed the homeless man’s face off.  This is not really a conversation that TiffeeG cares to engage in anytime, and even less so while she’s focused on making sure she’s not starting to choke. Weapons, choking and face mauling aside, she got through the session like a champ, and the nurse complimented her on how well she did, then told her that the next treatment is “a real doozy”.  Such encouraging parting words!

The effects hit her a few hours later and gave her a bad headache and generally yucky feeling, but she managed just fine and is doing okay this morning.  We both signed up for Snapchat in the afternoon, so I photobombed her throughout the evening to make her laugh. I will keep praying and visualizing good things for this medicine!

On to the crapper…the running side of things.  In my first post on this blog, I mentioned that I practically have my own wing at the podiatrist’s office for my plantar fasciitis.  For those unfamiliar with PF, it is inflammation in the tissue connecting the heel to the toes, creating the arches in our feet.  This tissue doesn’t get a lot of blood flow, which is vital for recovery, so when it gets injured it can take forever to heal.

When I experienced PF for the first time, I had just finished my first half marathon (which I described in a previous post).  I had all the classic symptoms…pain deep in the heel, especially when I first stepped out of bed.  I would take one step with the good foot and then step down on the other and almost fall down from the sharp pain shooting up my heel.  The pain got better as I moved around, and it felt great after runs (because the tissue loosened up during, only to tighten back up after).  So of course I kept running, thinking it was maybe helping and refusing to face facts (let’s not forget that I’m the idiot who continued to eat pumpkin and flax seed cereal before runs yet couldn’t figure out why my stomach got so upset!).

Sooo, yeah–I ended up almost not being able to walk.  I had PF in both feet.  As anyone who has experienced this dreaded runner’s injury knows, the problem is in the arch, but the pain is all in the heel…deep, catch your breath as the sensation drives right up your heel and into your foot kind of pain.  I’ll keep it short, but for runners who might be interested, I went through physical therapy, over-the-counter arch inserts, two cortisone shots, six months of ZERO exercise (not even weights) and a fair amount of time in the big black boot before finally getting things straightened out with custom orthotics that were made from a mold of my feet.

The problem is that I have high arches.  See?             orthoticpic There’s just not enough support for the impact of running.  My orthotics help alleviate the strain, and I am never without shoes on my feet.  I don’t step out of bed without sliding right into my supportive Nike flip-flops.  I stretch religiously pre-runs.  I stretch post-run.  I wake up in the morning, stick my legs straight up in the air and do my stretches I learned in PT before rolling out of the rack (it gives HH a good laugh).  I wear my running shoes around constantly so that I can have my orthotics on, and I avoid wearing heels or ballet shoes/flats.

I’ve been good for almost five years now.  I have occasional pain, but it’s manageable (I have bone spurs in both my heels caused by the long-term inflammation, so I feel those, but I just deal with it and keep on trekking).  I’ve been really worried about how my feet would hold up through marathon training, so I met with my podiatrist recently to go over things.  She told me that there have been some new advances since my last trip to her and prescribed a cream to use when I start to feel pain.  It includes a topical anti-inflammatory and some medicine to increase blood flow to the area.

So yesterday I was scheduled to run 6 miles at goal pace (around 9:30).  I wasn’t expecting any issues, since I’ve been running too close to goal pace effortlessly for months now, but things seemed to be off from the minute I got up.  I hadn’t slept well…worried about TiffeeG probably, and HH was out of town.  I woke up feeling dehydrated, which seemed ridiculous since I am guzzling water constantly.  I ran my first half-mile feeling like I was at pace, then my app popped in (I use Runkeeper) and said I was running a 9:51.  I tried to speed up just a little, and then realized I was running at 8:25.  I had no sense of pace!

I evened out a little, but I was just low energy throughout the run.  I wasn’t unable to do it, I just knew that it was kind of a bonk and taking more determination than it should to finish.  I told myself that it was just good practice for what race day will feel like  when I have to push through and find my focus.  It really wasn’t that big of a deal…not every run will feel like dashing through the tulips on a sunny spring day, and there was nothing wrong with me, so suck it up, right? I finished with a 9:15 average, which was perfectly fine…but I had been all over the place.

I chalked it up to a bad run, but started cursing when I got home and realized that my left heel was starting to ache.  I broke out my trusty frozen water bottles, iced both arches and applied the prescription cream.

My mom came into town, and the boys and I had a nice evening with her.  My oldest son Alex went to bed not feeling well, which was a concern.  HH got back into town at midnight from his business trip, and just as we fell asleep, here came Alex puking with the flu.  As I hopped out of bed to go help him, I almost fell down from the pain shooting up into my heel.  I hobbled down to his room, got him set for his miserable night (water, trash bags, paper towels) and limped back into bed.

I wanted to cry.  I felt so discouraged.  Here it is January, I haven’t even crossed the 10-mile long run mark (a distance I’ve run many times with no problem), and I’m already hobbling?  I suddenly felt like I had no choice but to quit.  I want to be a lifelong runner, not just a few-times racer, and I sooo do not want to go back to the days of no running and clanking around in a boot.  I lay awake for hours with my mind wandering in a kind of half-awake half-dozing kind of delirious mental slurry, pondering my running fate in the obsessive way that is part of my personality.  I know there would be far worse things than me having to stop training, after all, but I don’t want to disappoint myself.

I got up this morning with a modest amount of pain, which improved as I moved around and the tissue loosened up.  As HH was eating breakfast, he asked me what I was running today, and I told him what had happened yesterday and asked him what this maybe marathoner should do.

As usual, he kept it simple and didn’t overanalyze it.  “You made a commitment,” he said, and I know he meant to myself as well as to this blog and my fundraising (the man knows me).

“You run until you’re either in the boot or at the race.”

And that did it.  I agree with him.  I will be a lifelong runner.  Dammit, I’m a good runner too.  I just have screwed-up feet.  I ran this morning, but did 2 miles instead of 3 to take it easy.  I kept my route flat and my pace nice and slow at 10:07.  I iced, I applied my cream, and above all, I’m keeping it in perspective.

I’m not fighting Ankylosing Spondylitis.  I’m not dealing with anything of any real consequence.  To whine or spend too much time fearing that I won’t be able to run my planned marathon is a joke.  I will press on and see where the days and the runs take me…and as I’ve always said, each run is a gift.

The quick two miles felt fantastic (once my arch loosened up a little).  I listened to one of my favorite slow run songs to help keep me running slow…my Work It Out Wednesday song…”Fix You” by Coldplay.

I have a day off tomorrow, and then I will tackle 11 miles on Friday.  Fingers crossed, but not praying…I am saving my prayers for the things that really matter.

Feet don’t fail me now!

ATpinkdress

 

 

 

 

The Need for Speed

I’m listening to an AS sufferer recount his story in a YouTube video as I begin to type this post…he says he’s scared of chairs, beds…because he never knows what will make him hurt.  I like this guy because he’s sharing his story, trying to help others…and when you watch his videos, he’s striking to me.  A man in his forties, ball cap on, looks like he could be a firefighter or something…he’s normal, looks strong…and he’s describing exactly what my sister has gone through, and he’s telling it like it is.

If you have time, check out his video–it’s a very informative story about how AS started for him.

I follow Hurt Blogger on Facebook, who champions all causes related to autoimmune arthritis.  Here she is stocking up on her meds on December 31st, as she had reached her out-of-pocket maximum months ago thanks in part to chemotherapy bills reaching $88k (imagine her co-pay!)…

Photo: Only trip of the day is to the pharmacy to cash in on all the *free* prescriptions before 2013! And this bag is FULL!! I met my out-of-pocket maximum a couple months ago - get it while you can!

She reminds me of my sister…young and healthy looking, like the guy in the YouTube video.  If you follow her on fb, she has the most beautiful and vibrant smile in her profile picture.  Just like the man, just like my sister, she looks healthy, doesn’t she?

TiffeeG starts Remicade tomorrow, after spending most of the past year on Enbrel and Humira with no results.  Her husband is taking her to the first session (Remicade is IV-infused, so she has to go to St. Luke’s for it instead of self-injecting at home like she did with the other meds).  I have told her that I will go with her to keep her company next time.  I know she is nervous and not sure what to expect.  We all are…

I hate to “talk it up” with her and be too rah-rah-rah about it, because we all did that with the Enbrel and Humira and then felt so disappointed when they didn’t help.  This disease is stubborn, and we have learned over the past year that there is no one approach or treatment that works for everyone.  I’ve tempered my expectations, my prayers and my pep talks.  I’ve gone from oh please Lord make it go away to oh please Lord just make it better for today.  I’ve felt like if I get too excited and give too enthusiastic a pep talk, that she ends up all the more disappointed when the meds don’t work, which I know is ridiculous, because she’s the one who is hurting and little conversations with me won’t affect her hope one bit.  So I’ve tried not to say too much this time.  I’ve tried to be the quiet cheerleader.

But secretly (and now I guess not so secretly!)?  I’m praying for a home run with this medicine, an inflammation sucker punch, a calcification knockout blow.  I’m going to pray tonight for Remicade to flow through her veins and kick ass in her body like Rocky taking out Mr. T.  I know it won’t be immediate, and I’m willing to be patient, but I’m going to visualize that medicine lifting away her pain like Michael Clarke Duncan blowing out the evil in The Green Mile (ever read that book, by the way?  Incredible…I totally recommend it).

She started physical therapy last week again, and this time seems to have a really nice and knowledgeable therapist, so our fingers are crossed there.  The therapist told her that she could use the T.E.N.S. unit that I gave her all the time for relief and that she can just crank it up until it starts to help.  Did I mention that it’s portable?  We had a good laugh as she described running errands with that thing on and wires hanging out of her back…hot stuff!
I will keep you posted on the Remicade sessions.

As for the running, I ended up doing 8.5 miles for my long run on Friday, and I tried my very best to slow down (I kept it to an average 10:21 pace).  I know I’ve been running my long runs too fast, and I read something that said that if you’re running them too fast, you are actually hurting your ability to build endurance and won’t be able to run the last 6.2 on race day.  It seems so counterintuitive to me, but I am keeping in mind that the mileage is still so low…I need to follow the program and the paces.  Endurance is just like speed…it must be built from the ground up, and I’m not going to build it if I’m running my long runs too fast.  Right?  Right?  I sure hope so.  It’s just tough, because the second I start to let my mind wander and relax into the run, I start to run faster, so then I have to refocus and tell myself to slow down, which takes a bit of the fun out of the run because I’m not just letting my mind go and zoning out (the best part of runs for me).

I would appreciate any input or advice from any seasoned runners who might be reading!
Miles logged: 59.5

Happy Monday!

Welcome!

Hi there!  If you’re reading this post, you are likely a family member or friend of my sister or myself.  Thanks for reading!  I hardly know where to begin…the first post is definitely the most awkward!

I am starting this blog for several reasons–to raise awareness of a disease that my sister has recently been diagnosed with, to raise money for the Spondylitis Association of America (SAA) and their efforts to fight the disease and help sufferers, and to chronicle my journey toward my first marathon (again, hoping that people will enjoy the blog and decide to follow it, find out more about the disease and hopefully consider making a charity bet on my race to support SAA).

I should start with some facts, I suppose.  I am a soon-to-be 40-year old (very soon, like, within days soon) wife and mom of two boys and one rambunctious dog.  I am also the lucky sister of Tiffany.  Am I a runner?  I don’t know…I guess.  I’ve run for about 10 years now with varied degrees of commitment and success.  I have a few half-marathons under my belt, a 10k, a 5k, and a lot of untallied miles.  I have a pile of old running shoes in my closet, more moisture-wicking gear than you could imagine, custom orthotics and my own wing at the podiatrist’s office for my plantar fasciitis.  I know what a fartlek means, I have firm opinions on running etiquette, and I am completely addicted to whatever endorphins start flying around in my head around the mile 3-8 stretch on a long run.  Does that make me a “runner”?  I sure as hell hope so, because I’m about to tackle the marathon distance, and I’m scared!

I have always sworn I would never run the ol’ 26.2.  I am a cautious gal with high arches and gnarly bone spurs.  I put on the sunscreen, make sure my tunes aren’t turned up too loud, obsess over clothing and temperature, stretch like a beast and head out for my medium-distance runs.  It’s safe.  It’s just how I roll…and anything more than that is outside of my bubble.

Train for 26.2?  Never!  Run more than two days in a row?  Can’t be good for the body.  But now here I am, preparing to start the training (like thousands of others).  Why?

Of course because of my sister.  Because I can’t help her.  Because I can run, stretch, lift weights, do whatever I want to today–and she can’t.

My sister is 42.  Approximately a year ago, after many years of health issues, she was diagnosed with Ankylosing Spondylitis (AS).  AS is a form of autoimmune arthritis that causes inflammation of the spinal joints and other joints in the body.  It can lead to inflammation, pain and stiffness in many areas of the body.  Shoulders, neck, hips, eyes, feet–all small joints can be affected, and even the heart and lungs in some cases.

The hallmark for most patients (and the first major problem for my sister) is involvement of the sacroiliac (SI) joints, where the spine meets the pelvis.  My sister dealt with this unresolved pain for many years before other symptoms started appearing.  As the inflammation continues unabated, bone growth occurs at the site of inflammation (within the joint), eventually causing new bone formation and fusion of the spine.  This can occur in the neck vertebrae as well.

There is no cure for AS.  It’s difficult to diagnose, because the disease and its effects on the SI joints usually progress for 7-10 years before the damage becomes visible on conventional x-rays.  Meanwhile, the damage IS occurring, and it cannot be reversed.

I will have much more information in future posts about this disease, about my sister’s history with it and her current treatment plan.  For now, I’ve included a few links to websites with information about AS, and I plan to add more.  I know my sister is embarrassed in a way to share her story…she doesn’t want a pity party–but she also doesn’t want one person to go through the physical and mental pain she has gone through in the past several years.  People with this disease “look” normal.  They may start to feel like they’re crazy, because the doctors can’t seem to find anything seriously wrong based on x-rays.  My sister has endured serious pain and continues to, as she is not yet experiencing relief from the drugs they have tried, yet she has spent several years doubting herself and wondering if she’s a baby for complaining about her pain.

I want to support my sister, and I want to provide information that might be able to help someone down the road who has the beginning symptoms of this disease and doesn’t know what’s wrong.  I have spent years running, and I have always been grateful for my health and my ability to step outside, turn my face to the sun, breathe in the fresh air and run a few miles.  Now I feel that way ten times over, and I hope that I can raise awareness and money for the fight against AS with this blog and my planned run.  Thanks for reading…more to come!

Angie