Archive for category Fitness
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…
I went snowboarding on Saturday. Snowboarding is something that started hurting me years before my diagnosis – ankles, wrists, bottom of feet. If there was any early indication that something was wrong and I had RA, it was snowboarding.
Of course, I didn’t ever go see a doc because of the pain I had snowboarding. I switched to skiing instead.
So Saturday was my first time on the board in two seasons (except for one extraordinarily painful run last year). I’m hmappy to report, it went great!
I only had pain in my feet at the very end of the day, after about 12 runs.
I was elated about this. I felt so powerful and back to myself. I guess I have to give credit where credit’s due: perhaps the drugs are working their magic in ways I don’t appreciate in the day-to-day.
I felt so good, I was able to follow up Saturday with a pain-free day of powder skiing on Sunday.
Hell yeah. I’m appreciating my life today and all the help I’ve had to get me to this point.
One more thing: I have really bad circulation (Raynaud’s Phenomenon & Chillblain’s), so I get painfully cold toes. A skier on the gondola recommended trying SuperFeet insoles to keep my feet warmer. They make comfort insoles too for everyday walking. I haven’t bought them yet, but I think I’ll give them a try, both in my ski/snowboard boots and my everyday shoes.
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. 🙂
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.”
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.”
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!).
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.
Just had to share that last weekend I had a great solo run – 13.2 miles (that’s a half marathon!!) on a beautiful, dirt, hilly trail. I was running VERY slow, but I had a great time and it was FUN! Barcelona Marathon, I’m on my way!
On another note, I tried Kari Carr’s Mediterranean wrap recipe. This was my version of the cashew cheese:
Throw the following into a blender and blend until cheesy (consistency of hummus):
- 2.25 cups of raw, unsalted cashews (I didn’t presoak because (a) what does that even mean? (b) why would one do it? and (c) who has the time?
- 1 cup almond milk (I used almond milk instead of water because I thought, why not?)
- handle of Italian parsley
- sprinkle of chia seeds (they’re apparently good for you and give you energy, so this was another addition to Kris Carr’s recipe)
- sprinkle of salt & pepper
I put the “cheese”, black olives, sundried tomatoes, and pumpkin seeds, onto collard greens for a super yummy (trust me!), healthy lunch. 🙂
My Thanksgiving and the last week has been awesome, and I’m so grateful for it.
My marathon training had been off to a slow start as I was dealing with some symptoms, fatigue being one of them. It was really hard to motivate.
My last two long runs – 10 and 11 miles – have been great. I did the second long run on Thanksgiving with my parents’ dog. She’s a great motivator & keeps me going fast.
So now I’m feeling like a marathon may actually be a possibility for me. I’ll be getting X-rays in February, so I’ll be able to see if I’m doing damage, but so far I feel great. I love the feeling of getting out and running. I’m so grateful to live in a place with such awe-inspiring running trails.
Then I spent the rest of Thanksgiving cooking – 2 gluten-free, dairy-free pumpkin pies, 1 gf, df pumpkin bread, and a grilled zucchini/squash salad tossed with garbanzo beans and olive oil. Yum! My family was very supportive of my restricted diet (with a little teasing, of course!). I am consumed with gratitude for my supportive family and friends.
Also, perhaps one of the biggest things I’m thankful for: my symptoms have been really minimal. AND, I’ve gotten the hang of the syringe, so self-injection is finally pretty painless. The verdict: I definitely like the syringes better than the pens. Way less pain, bruising, swelling and uncertainty.
I hope you all are off to a great, pain-free start to the holiday season.
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…