Archive for January, 2013

Crazy Sexy Advice

The lovely Kris Carr

I happened upon Kris Carr’s blog through a recipe. I loved her recipes and her attitude, so I decided to check out her book, Crazy Sexy Cancer Survivor (apparently there’s a documentary too, which I haven’t watched yet).

I felt a little dramatic reading it because everything she was saying really hit home for me. I have Rheumatoid Arthritis, not cancer. I’m not going to die of RA. My life’s not at stake. But many days, it feels exactly that way. I have the least sexy form of cancer possible. The kind that doesn’t get a book or sympathy. It’s an invisible disease with a name that diminishes its magnitude on sufferers’ lives. A disease that eats you from the inside out and can take everything away from you if you let it. Your joints, your freedom, your hope. So, in that way, I identified with Kris. As I was reading her book, I replaced the word “cancer” with disease, and it became a book about the power of survival.

One of the most important things I got from the book, which I totally wasn’t ready for, was the concept of healing versus curing. She writes that many of the healthiest people she knows are living with disease. This really hit home because I think I’m the healthiest I’ve ever been in my life, minus the RA. I watch what I eat, I workout, I don’t drink, I try not to sweat the small stuff, and I take care of myself. She talks about how people always say they want to be “cured” and get their lives back, but with healing, you can’t go back to that life. You will change your life after a diagnosis. Hopefully many of those changes will be for the better.

She writes about how important it can be to re-align your expectations of a cure and to be OK with healing over clinical remission. All you have to do is look at my “About Me” page to know that this is NOT my current approach. I want to kick this thing in the butt! I want it to be out of my life completely! But it made me think, could I be OK with healing to the point of this disease being manageable with minimal drugs? It’s sure not as much fun as not having it at all, but it is worth a thought. Sometimes the goals of “cure” and “remission” can just be added stressors because they may not be in the cards and they certainly may not be in your control. What is in your control is an attitude of healing. Constantly improving, learning, living, hoping. Not giving up. And maybe that’s enough.

I recommend you give it a read or browse through her blog. There are powerful nuggets there on changing your attitude, diet and lifestyle to promote healing. Here are my favorite quotes:

“During the time of darkest night, act as if the morning has already come.”
-The Talmud

Kris Carr quotables:

  • On making intimidating life/diet changes & just living:
    “You don’t have to be good at what you choose. In fact, go ahead and embrace rotten. You already have cancer (RA, a disease), why would bongos intimidate you?”
  • “Success is six degrees of separation.”
    (i.e. take small steps on big goals)
  • “The secret to happiness is the decision to be happy.”

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Running and the Sundance Film Fest

I ran the longest I’ve ever run this weekend – 17 miles! My marathon training friend and I combined a 5-mile race, a 2-mile in between run, and a 10-mile race, for one epic morning.

The run went pretty well. I was worn out after, and my legs definitely started feeling it around mile 13 or so. The great thing is that all the aches and soreness seems to be normal “I just ran 17 miles” pain, not Rheumatoid Arthritis pain. And that makes me so happy to be sore. 🙂

On another note, I’m going to the Sundance Film Festival next week. This will be my second year going. I have mixed feelings about the event last year. It was a couple of months pre-diagnosis, and I was struggling to be normal and figure out what the hell was wrong with me. My feet were aching, my mood was low, and my energy was pretty non-existent.

The streets of Park City were snow-filled and icy, which made walking on uncooperative feet and poorly-chosen shoes one of the worst experiences of my life. Despite all that, we saw some great films and apparently I had enough fun that I signed up again.

This year’s gonna be a little different. First off, my feet are way better than they were a year ago. Second, I’m only packing ridiculously not-cute, but totally ice/snow appropriate shoes. Third, I can’t drink.

As Sesame Street would say, “One of those things is not like the other!” That’s right, not drinking at Sundance is really not something I’m particularly looking forward to. Drinking is kind of part of the Sundance culture – where celebs drink and bars and clubs literally pop up over night. So everyone I’m going with is understandably excited to party. Hopefully with Joseph Gordon-Levitt. 😉

I, however, just got back a blood test that shows that my over-worked liver enzymes are once again elevated. This is a fun side effect of taking Methotrexate, which happens to be a chemotherapy drug that’s pretty hard on your liver.  So, that’s fun.

My friend was excitedly talking about the parties and how our friend is psyched to be ending a detox with a drink-fueled weekend at Sundance. Great. So I told her that I was worried that the whole thing was going to be drinking and I may be seeing more movies than all my friends to avoid the bar scene. To which she replied, “You’re not drinking??!!?” Uh, yeah, still got that disease goin’ on…and still on that drug…which you know because we hang out all the time…so, yeah, I’m not drinking.

I’m trying to look on the sunny-side though, because I’d rather be sober and enjoying Sundance pain-free, than be drinking to try and dull the pain in my feet, making it all the more difficult to walk (go denial-style logic!).

Joseph Gordan-Levitt and Tony Danza posing for pics at this year’s Sundance. (January 18, 2013 – Source: Larry Busacca/Getty Images North America)

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Hero Foods From a Chef With RA

Hero Foods From a Chef With RA

Sasha who writes the blog RA My Way mentioned Seamus Mullen’s book, Hero Foods, in a recent blog post. I haven’t checked out the book yet, but love his philosophy and had to share!


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All I Want(ed) For Christmas Was a Genome Test

I’m a strange girl. I like fashion and whatever, but I’m fascinated by genetics, biology, weather, and astronomy.

Throw a chronic illness into the mix and I find myself researching lab mice in my spare time. Go figure.

Anyway, my family knows I’m a bit odd, but my request for a genetic test for Christmas was met with uncomfortable silence. My sister laughed and my mom told me that sounded a bit too personal. That if something came back that I didn’t want to hear, she wouldn’t want to be the one to have gotten me the gift.

I totally understand that. So today, I finally bought myself my Christmas present: a genetic test from 23andMe.

I literally had butterflies of excitement filling out the order form. I think it’s so cool that biotech has entered the realm of personal DNA testing. And that I can get it for $99… Wow.

Not only that, but I like how 23andMe supports scientific/medical research. You can join the 23 and We community and agree to lend your anonymous genetic test results and survey results to studies. I think that’s awesome. I think that the more data points we have, the more trends we can discover. The more trends, the more hypotheses and tests that can take place. More tests, hopefully means better answers, better drugs, and more hope for patients.

I have to wait about a week to get the test tube, then about four weeks to get results. I’m excited to let you guys know what I learn!

Side note: when I Googled “DNA testing for Christmas”, Justin Bieber’s image was everywhere. Weird.

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23-year-old cyclist Jack Bobridge reveals he has RA

23-year-old cyclist Jack Bobridge reveals he has RA

& is managing well with medications… I like this article because it a) breaks the stereotype that RA only affects menopausal-aged, inactive, overweight women; b) is incredibly brave of him to “come out”; and c) is hopeful because his meds are allowing him to continue cycling and live the life he wants. Cheers to that, Jack!

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Never, Never, Never Give Up

Happy new year everyone! Today, I feel like 2013 is going to be a great year!

I guess that between the holidays and being stuck in a bit of a flare without the energy to put a positive spin on it or the desire to add to the negativity you often find online, I didn’t have much to say over the last month since my last blog post. At any rate, it’s a new year and I’m back!

Let me catch you up on both my RA and my marathon training. Over the last month or so I’ve been having more inflammation and pain in my feet. The three smallest toe joints in each foot have been pretty stiff and painful. It wasn’t hurting more with running, but it was making me just not want to go running. Or do yoga. Or do much of anything at all.

Despite all that, I’ve started my ski season. It makes my foot, especially my right foot, extremely angry and swollen to ski. It’s a little reminiscent of last year’s ski season, before I knew I had RA, but thought my feet mysteriously had grown because it was such a painful struggle to put my boots on (Nope, they were just majorly swollen with RA!). At least this year my boots go on fine. I just start to feel them swell and press on the boot about halfway through the day. (Yeah, yeah, maybe I should lay off the moguls, powder and trees, but where’s the fun in that?) It’s a little disappointing that I’m not just “cured”, but I’m grateful to be back on the slopes.

Combine my mad ski foot with lack of sleep because of an unexpected, but welcome holiday houseguest, and RA symptoms seemed to be creeping up on me.

Then, like I like to do, I pushed myself a bit too hard. After a week of Christmas parties (read: not enough sleep) and a day of mogul skiing, I decided to go on a 10-mile run with my two Barcelona marathon training buddies. My pace is slower than theirs, but I tried to keep up anyway, and the run was pretty rough. My foot didn’t feel great, I accidentally hyperextended my knee on a steep downhill, and the cold weather and wind made my normally-dormant asthma flare up.

After that, my marathon training started feeling pretty damn stupid. And there’s nothing like seeds of doubt to make everything – from pain to happiness to stress – worse.

I knew I needed a break. I took two weeks off of running completely, only skiing twice (foot wasn’t exactly happy about the skiing). I spent the time doing holiday stuff, eating and relaxing. It felt good to rest, but a little dispiriting. In all that resting, I was secretly giving up on the marathon.

Then last Saturday rolls along. My training buddy and I were supposed to be at 16 miles (wtf, right?!), but my feet were hurting (especially the right one) and just the thought of one mile was enough to make me want to go back to bed. But, I didn’t. I strapped on my running shoes and drove to meet her. I warned her that one mile might be my limit and she could be on her own, and she agreed that I should prioritize my health.

So, we took off. Mile one felt good, mile two great. We got lost in conversation, and suddenly we were at mile eight. I started playing music, and miles 10-14 literally had me grinning. It felt SOOO good to be running. My feet felt fine. Honestly, it was so weird. The last two miles were a little rougher, but totally manageable. Nothing like the miserable 10-mile run I’d done over the holidays.

16.4 miles later, I felt great. I mean, beaming ear-to-ear, exhilarated, and feeling for the first time in nearly a month that a marathon was possible and not the dumbest idea I’d ever had.

Another bonus from my awesome run: I woke up the next day and my feet DIDN’T HURT. I don’t really have an explanation for this. Maybe the run and the stretching after actually stretched them out in a way they needed. Maybe my flare just ended (topic for another post, but my symptoms seemed to disappear with my waning hormone cycle – read: period). Whatever. I didn’t care too much why, I just felt great. AND I’ve continued to feel great all week – my mood and energy levels are way better; I’ve done yoga, weights and a six mile run.

Moral of the story: please don’t give up. Or, in the brilliant words of Winston Churchill, “NEVER, NEVER, NEVER GIVE UP.” I feel like it really is that simple.

Sure, listen to your body. Take a break if you need to, but don’t get sucked into that creeping, enticing lazy, depressive apathy that can take over your life. Strap on your shoes, go for a run (or whatever that activity is that makes you feel happy, powerful and strong). Just never, never, never give up.