Archive for category Running/Marathon
Magical Thinking #1: I will find the perfect shoe
Let’s start with my favorite magical thinking first: somewhere out there, exists a perfect shoe for us RAers.
I know I’m lying to myself with this one, but the quest is never ending. I love shoes, so, even with the blisters and sore feet pads, it’s a pretty fun quest to be on.
I have two new shoes to test out in the upcoming months: Faux Fur-Lined Tom’s & Yoga Sling Sanuks. The box was waiting on my doorstep as I came home from work today and I seriously did a happy dance. Shoes! 🙂
So far they’re both very comfortable. I’m bringing both on an upcoming trip, so I’ll let you know how they hold up.
Magical Thinking #2: I can gargle my sore throat away
Way less fun is my sore throat that refuses to subside. It started last Friday and has progressively gotten worse, not better. Despite heaps of vitamin C, garlic, immune boosters, salt water gargling, and my ACV elixir. I was on the fence about whether to skip my Enbrel and methotrexate this week, because both are immune suppressants. My RA symptoms have definitely been more active recently, so I begrudgingly skipped the drugs. Sure enough, today they’re flaring a bit again. So much ugh, only new shoes could cheer me up (see above, yay!).
The surprisingly not awful, throat-soothing, but in no way a cure, ACV elixir recipe:
- A generous splash of organic apple cider vinegar
- A dash of cayenne pepper
- A dash of ground giner
- A heap of honey
- A squeeze of lemon
- Enough hot water to mix it up and make it palatable
Magical Thinking #3: I’m ready to start training for another marathon
It’s counter intuitive, I know. I’m sick, my RA symptoms are flaring, I just bought two new pairs of shoes and they have nothing to do with running…. But there’s something about being stuck on the couch that makes me brainstorm big goals. I’ve mapped out a 10k in May, a half marathon in July, and marathon in October.
We’ll see. The timing may change and the races may change, but I’m motivated to push myself to train for something, despite (or maybe because of) the pain!
The hardest thing for people to understand about RA is the ebbs and flows of fatigue and pain symptoms. One moment, I can be so tired I’m unable to move from the couch, every step met with sharp pain or a dull internal throb. The next, I’m hiking a 14er or doing a high altitude half marathon. I don’t blame people for being confused.
But here’s what mountains and marathons mean to me:
When I have a flare, I get depressed. Yes, I know logically that physical symptoms have nothing to do with my mental state and that I am separate from my symptoms. But not feeling like yourself or being able to do what you want to do is depressing.
I think the symptom that gets to me the most is fatigue. The all-encompassing heaviness makes me apathetic, which leads to many hours on the couch in front of the TV, which makes me depressed, which makes me more fatigued, which makes me more depressed, and on, and on. I think you get the picture.
So on days I feel good, like really good, I am jubilant. Unstoppable.
Sign me up for a 4:30am wake up call to climb three 14,000 foot mountains in one day. Upgrade me from that 10K to a half marathon.
Give me a challenge, I want to take on the world. I want to celebrate my body and all of its strength, power and agility.
ESPECIALLY because I know all too well what it feels like to have that strength, power and agility seep away. Because of that, I embrace the good and celebrate it when it comes around.
As I told my parents, I’ll take the achy, sore muscles and satisfactory tiredness of a strenuous workout over RA pain and fatigue ANY DAY. In fact, the feeling of sore muscles makes me happy because it reminds me how strong my body is.
Sometimes pushing myself like this means I “pay for it” with more symptoms later. I used to try to regulate my exertion because of that. But I’m realizing that’s not me. I’d rather go big when I can and rest when I need to than live a more regulated life (with seemingly as many random flares) somewhere in the safe zone.
Now I know I’m quite lucky to be able to climb mountains and run races. For many with RA, this is not at all a possibility. But I hope that within any limitations you have, you are able to celebrate the good days with your own version of a mountain, acknowledging all that your body still does for you.
As my birthday creeps closer (tomorrow!), I realized I totally missed another anniversary: the end of two years with my RAD diagnosis.
My first year RAD anniversary was a really big deal to me. Probably because I’d set an unrealistic expectation that one year was long enough to “beat” RA into remission, get off drugs, be pain free, and run a marathon.
One year later, I was only able to accomplish one of those goals: I successfully (though not pain free) ran my first marathon.
By the time my first year anniversary approached, I already realized that “curing” a chronic disease (read: no cure) in one year was pretty unrealistic. As was getting off drugs that were keeping my disease at bay and my pain under control (usually).
My one-year anniversary marked many things for me. I accomplished the huge, scary goal of running a marathon in the face of a huge, scary diagnosis. I also found a bit of respect and acceptance for my disease.
My second anniversary of my diagnosis came and went un-celebrated. I think this speaks to the enormous thing I’ve learned in the last year: you are not your disease, so allow yourself to forget about it as much as possible.
This year has been full of ups and downs, so obviously forgetting about my RA hasn’t always been in the cards. During a flare when you’re in pain, while dealing with methotrexate side effects, or visiting your doctor more than your best friend, or while giving yourself shots, or dragging yourself in for blood tests, it’s pretty impossible to forget your disease.
BUT, in the in between times, I’ve gotten a lot better about letting go. I’ve taken on old hobbies again. I’ve relaxed my diet a bit. I really feel I’ve gotten pieces of my old life back.
So, even though I’m a month late for my anniversary, I think that’s something worth celebrating.
There’s other things worth toasting to too – I’ve successfully moved from 10 methotrexate pills per week to 6, I’ve gotten WAY better at giving myself shots, my liver tests have been stellar despite a bit of wine indulgence, spring is coming and my circulation is already improving, and I’m feeling really good and mainly pain free.
I know it’s odd to acknowledge the anniversaries of a diagnosis you didn’t want or ask for, but I hope your anniversaries bring something to celebrate too.
I have running on the brain.
This is probably not the best thing to be thinking about, as I promised myself that due to last year’s Chilblains, this year, I would take a break from running in the cold. Well, guess what, it’s January and it’s cold, but I want to run! And no, the treadmill just doesn’t cut it for me.
The weather was nice this weekend, so I went for a gorgeous run on the mesa. The only problem is that there were still puddles and a bit of snow coverage.
Anyway, I think that run, combined with two days of skiing prior and one day of wearing my favorite, not-so-comfy boots post-run (But they’re vintage!! How can I say no to them when they stare at me from the closet that way?) was the perfect Chilblains trifecta. Sure enough, my toes are painful, swollen, itchy, red and purple. 😦
It hasn’t stopped me from wanting to run however, it’s just getting me dreaming of warm runs and destination races. And in my daydreaming, I am imagining crossing the finish line on my second marathon. This time sub 4:30.
I’ve been looking, and the Medoc Marathon sounds like a blast. A run through French vineyards with wine and cheese served at water stops? Mais oui, s’il vous plait.
Is anyone else planning a big race for 2014? Has anyone done the Medoc? And most of all, anyone out there a runner with bad circulation and/or Chilblains who has advice that doesn’t involve the treadmill? Merci beaucoup!
NYTimes: Ask Well: Is Jogging Bad for Older People?
I’m sporting my Barcelona marathon tee in support of the victims of the Boston Marathon bombings and the running community in general.
I watched the tragedy unfold yesterday and was absolutely speechless, horrified, and angry.
Who would do this? Why? And why are they so cowardly, they haven’t come forward to claim responsibility yet? What did they hope to gain if it wasn’t credit for the attacks?
Don’t they realize that runners will not be terrorized. If I’ve learned anything in my year training for my first marathon, it’s that RUNNERS’ SPIRITS WILL NOT BE BROKEN.
We run to defeat all odds and expectations. We run to stay free. We run.
For those who died or lost limbs, my thoughts are with you. This is such a terrible tragedy. You have the support of the running community. An international community of people who will not give up.
I just got back from my mega trip to run the Barcelona marathon! I’m very proud to say that thanks to you guys, I raised $555 for autoimmune disease research and awareness (http://www.razoo.com/story/Barcelona-Or-Bust-Running-For-Autoimmune-Diseases). That’s $55 more than my goal!!!
I’m also proud to say I MADE IT! I’m not going to lie. It was very hard. My body was aching, my feet were screaming, my legs were shaking and my time wasn’t great, but this pic is me crossing the finish line! 🙂
Here’s my breakdown (obviously, I was slowing down at the end):
10 km time: 01:02:39
1/2 Marathon time: 02:17:40
30 km time: 03:23:27
42 km time: 04:54:30
I’m not sure there’s another marathon in my future, but I am so proud of this one. I’m also happy to report that my body recovered quickly. I was able to go see a FCBarcelona football game that night, do yoga the next day, and thoroughly enjoy the rest of my trip (more on that in another post).
I have been meaning to write a post about Raynaud’s Phenomenon and Chillblains for some time. So why not today while I’m watching snow fall peacefully and thinking, that won’t be good for my toes.
First off, for those of you that don’t know, Raynaud’s is a circulation condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Meanwhile, Chillblains is a tissue condition that occurs with cold exposure, causing redness, blisters, pain, inflammation and itching.
For me, what this actually means is that I have struggled with cold hands and feet from poor circulation my whole life. When I hit puberty, this translated into my hands and feet occasionally (usually at really inopportune times, because Raynaud’s can be associated with emotion) turning really spectacular shades of blue, red and purple. In my late 20’s, the most common symptom is losing all blood flow to my hands and feet when they’re extremely cold or in high altitude. This causes them to go white and numb.
Then, this year rolls around and my toes are now prone to the really painful, unattractive blisters associated with Chillblains after cold exposure. Fun!
I’m only writing about this because it took me forever to diagnose these two problems. When I first got Chillblains, I thought I’d had a run-in with a troop of vicious spiders that had bit up my toes.
Now, unfortunately, the only treatment I’ve been prescribed is avoiding cold (Ha! Who are we kidding? I ski and snowboard… and I’m training for a marathon in the winter). Other tips include warming your extremities slowly when you come in from the cold (much like frostbite). I’ve also found putting witch hazel on my toes twice a day helps a little.
Though my doc says these are two separate issues from Rheumatoid Arthritis, I’m not convinced it’s unrelated. I am curious how many of you autoimmuners out there also suffer from circulation issues? If so, any tips?
AND, in case you didn’t see my last post, please consider donating to help me reach my goal of raising $500 for autoimmune disease research and running my first marathon! I’m only $200 away!
For some reason, I really struggled with the concept of asking people to donate money for a cause I care about.
Why? Because it makes me feel extremely vulnerable. Because only a handful of people know that I have RA. Because asking for money makes me feel obnoxious.
But, I put all that aside and decided to set up a donation page to give my marathon a purpose: raise money for autoimmune disease research.
I chose to donate the money to the American Autoimmune Related Diseases Association, because they are not focused on just one autoimmune disease. Since these crazy, mysterious diseases seem so connected, this appealed to me.
I know you all already do your part by raising awareness of autoimmune diseases, but please consider donating if you can:
P.S. Have you told everyone in your life about your disease or are you keeping it a secret? As I’m weighing the pros and cons of sharing the donate link on Facebook, I’m wondering how other people have handled this…
A lot has happened since my last real post, so bear with this, cause it’s gonna be all over the map…
The Good – Marathon Training
Last weekend I ran my 20 miles!!! This was my peak goal for training before my marathon. I’m going to do one more long run (16-18 miles…hopefully 18) and one more longish run (12-14 miles) and then that’s it… Marathon time!
The run itself went pretty well. My training buddy came up and we ran all quadrants of my town – a serious whirlwind tour including bike paths, trails, roads, and pit stops at a grocery store and a rec center (did not do good things for our time).
Mile one was hard, but it usually is. My new-found asthma was flaring a bit, despite the inhaler I’d taken before. The asthma went away pretty quickly though. Then I got into a groove and miles 3-12 were breezy. Mile 13, not so hot. Miles 14-16, feelin’ grand. Miles 16-18, the wind started blowing and I was struggling a little. Miles 18-20…REALLY AWFUL (I didn’t want to tell you that, but it’s true). Suddenly, my body started hating me – knees, outer hips, numb toes, and, man-oh-man, the bottom of my feet ACHED.
Not a great note to end on, but at least I did. The marathon’s gonna be tough, but I’m confident I’ll cross the finish line.
On another note…
I had my three month check-up with my rheumatologist.
The Good – No New Damage
My new set of X-rays show no new damage! Hooray! Gotta hand it to all those scary drugs I’m on for keeping more bone erosion and permanent damage at bay!
The Not-So-Good (I know, I said bad in the title, but I don’t want to be that negative)
My general pain and inflammation level is not approving much lately. In fact, I think it’s worse than three months ago. Remember my left wrist? Well the thing doesn’t exactly look or behave normally still… About a month after the cortisone shots, the skin where the rheumatoid nodules had been became rough and colorful (red usually, but sometimes white or purple). One time, my mom even asked me, very concerned, whether I’d burnt myself.
Aside from seemingly scarring my skin, the shots worked pretty well for awhile. Over the last month, my wrist bone seems more and more swollen. Now it’s gotten to the point where I think it’s pressing on my nerve, sending a shooting nerve pain up the left side of my hand at really fun, inopportune moments.
Given the way my skin reacted to the shots, my doc doesn’t want to treat the swelling with another shot. In the end he recommended more methotrexate. That’s right – the drug that’s freaking me out right now because of its connection to interstitial lung disease? More of that.
He did talk to me about MTX and ILD. He assured me that he reviewed my chest X-rays and doesn’t believe that just because I had ILD in the past, I am more likely to get it again. He also said the chances of getting it are very low. It’s reassuring to me that he is aware of the risks and made the call anyway.
He also said he didn’t want to put me on methotrexate-alternative luflumonide because it causes birth defects (as does methotrexate), but takes even longer to leave your system than MTX. Given that I don’t want to give up on having kids someday yet, that reasoning sounded all right to me.
Either way, I’m still trying to get that second opinion. No appointment yet, but I sent the referral in and now I’m waiting to be approved.
The Bad (Sorry, it’s not all sunshine and rainbows…)
My doc says 10-15% of his patients are on a biologic alone and not taking it along with methotrexate. This number is really disappointingly low to me. As is the number of patients in remission who aren’t on drugs (to be honest, I didn’t even ask). I know I should be grateful that there are drugs that help as much as they do. I just don’t want to be on them for the rest of my life. This may sound negative, but I want you to know that I feel pretty good about the research being done on RA and the chances of better treatments and a cure in the (hopefully my) future.
Also disappointing is that rather than decelerating my meds because of my outstanding remission (I wished), I’m upping my methotrexate once again. I’m now up to 10 happy little yellow pills per week. This has made me majorly bummed, which brings me too…
The Ugly – The Weepies are not just a fantastically sad indie band
For whatever reason, my disappointment at being where I’m at a year post-diagnosis is manifesting itself in a major case of the weepies. Luckily, it’s mainly been reserved for my boyfriend, two close friends, acupuncturist, and therapist, but that’s too many people for this girl. The only thing left is to admit it to the blogosphere and hope that by sharing, I can cultivate some of that Kris Carr wisdom and move on with my life.
I know that things aren’t all bad. I’ve made major progress since being diagnosed. I rarely feel stiff in the morning (I think my pain scale may differ from non-RA’ers, but there was a time when mornings meant that non of my toes would bend for an hour…making walking comically difficult.), my energy and GI issues are generally much better, my feet are not nearly as swollen or painful. I’ve become a bit more of a bad-ass because now I can inject myself and know that I’m a hell of a lot more resilient than I knew before. I also am halfway to med school given all the research I’ve done… 😉
But there are these moments, like today when I struggled to zip my right boot up because my hand wasn’t cooperating, when I have trouble seeing the good. There’s like this echo chamber in my mind of negative thoughts that can drown out all logic if I let it.
I for one am not going to be celebrating the one-year anniversary of my diagnosis drowning in negative thoughts and grieving something as dumb as a zipper. I’ll be in Barcelona running a marathon and celebrating how far I’ve come. Thanks to all of you for cheering me on. Wish me luck. 🙂