You Don’t Know What You Don’t Know
Photo courtesy science.nationalgeographic.com
I’ve got something heavy weighing on my mind that I will talk to my doctor about when I go to see him this month, but that I’ll share here now. First, some background.
When I was a small, small child, I had severe Interstitial Lung Disease. ILD is a catch-all term for a systemic scarring of the lungs that leads to a decreased ability to take in oxygen. (I was the toddler with the puffed up cheeks from the combo of prednisone and oxygen, carting an oxygen tank behind me that was my height.)
They tried to find a reason for my ILD, testing me for everything, including AIDS, and even doing an exploratory lung biopsy. But they never did figure out what caused my ILD.
As inexplicably as ILD arrived in my life, a couple of years later, it left. I progressively regained most (at least 70%, and at times over 80%) of my lung function. I went in for annual checkups every year from as far back as I remember until about age 24, when they finally declared ILD a non-issue in my life. This is highly unusual. Many of the kids who were at National Jewish Hospital with me are no longer here, and my parents were told to prepare for my death when I was being treated and seemingly not getting results.
ILD has always hung over my life like this mysterious legend. Much of it happened before I was old enough to remember, but the annual check-ups, and the way it affected my parents and sister were impossible to avoid or forget.
So I was a little surprised to get back from Sundance to the news that my mom’s friend had died from ILD and that her husband believes it was caused from the chemotherapy she received years ago for breast cancer. Were ILD and chemo connected at all? I asked Google and found out that not only is ILD connected with chemo, it’s connected to low-dose chemo. As in the low-dose chemotherapy in the form of methotrexate that many of us RA patients use as a treatment.
The stats are pretty scary. In RA-land, it seems that ILD is so common it has its own name: Rheumatoid Lung or Methotrexate-Associated Lung Disease. About 40% of RA patients will have extra-articular disease involvement, as in RA will effect their lungs, cardiovascular system, blood, etc. About 18% of RA patients have lung involvement and, according to one article, ILD. For those living with ILD and RA, the survival mean is a low 3.2 years. (all these fun facts are from this article: https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-16-rheumatoid-lung-disease/)
The article went on to say: There have been questions posed as to whether methotrexate can predispose to lung disease or whether patients with pre-existing lung disease who are put on methotrexate will develop lung disease thereafter. There’s no evidence for either of those. The fatality rate of patients with proven methotrexate-associated lung disease is around 17%, and re-challenging those patients is not usually recommended. It’s thought that re-challenging patients with methotrexate may somehow cause a stronger secondary response.
(https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-16-rheumatoid-lung-disease/)
This is reassuring…is there a correlation or not?? There’s no evidence that methotrexate causes ILD (whether pre-disposed or not), yet there are patients with “proven methotrexate-associated lung disease”. Huh.
Here’s what another article had to say about it: ‘Methotrexate lung’ can occur when methotrexate is used to treat rheumatoid arthritis or cancer…Most chemotherapeutic agents can cause ‘chemotherapy lung’, acute ILD with the pathological features of DAD. Incidence is estimated at 10%, although it is difficult to obtain accurate estimates due to the complexities of diagnosis and the small patient numbers involved.
(http://www.nature.com/bjc/journal/v91/n2s/full/6602063a.html)
Here’s another study about the correlation between methotrexate and lung disease: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005365/?page=1
Well, great. I feel like my rheumy could have at least mentioned this! Should I be worried since I have a history of ILD? Was it such a non-concern, my rheumy didn’t even bother to bring it up? Should I try to find something else instead of MTX, even though I seem to be getting results?
Does anyone have any experience with this or knowledge about the correlation between methotrexate and lung disease? All thoughts would be much appreciated!
Crazy Sexy Advice
Posted by My RAD Life in Alternative Medicine, Dealing, Diet, Fitness, RA/RAD on January 22, 2013
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.”
Running and the Sundance Film Fest
Posted by My RAD Life in Dealing, Drugs, Fitness, RA/RAD, Running/Marathon, Symptoms on January 20, 2013
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)
Hero Foods From a Chef With RA
Posted by My RAD Life in Diet, Recipes on January 14, 2013
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!
All I Want(ed) For Christmas Was a Genome Test
Posted by My RAD Life in Uncategorized on January 14, 2013
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.
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!
Never, Never, Never Give Up
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on January 10, 2013
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.
Well I looked my demons in the eye
Posted by My RAD Life in Uncategorized on December 12, 2012
Well I looked my demons in the eye, laid bare my chest, said do your best, destroy me.
See I’ve been to hell and back so many times, I must admit, you kind of bore me.
-Ray LaMontagne, from Empty
This is how I felt after a pretty rough morning – couldn’t open my mouthwash because of stiff, sore hands and my walk went really slowly. It all left me feeling like, Really? This again?
RAD Fish Oil
Posted by My RAD Life in Dealing, Diet, RA/RAD, Symptoms on December 10, 2012
Fish Oil!!
So there’s some science to the obscene amounts of fish oil my naturopath has me consuming… yeah!
Marathon Training & Raw Food
Posted by My RAD Life in Dairy/Casein Free, Diet, Fitness, Gluten Free, Recipes, Running/Marathon on December 6, 2012
Mile 4.5 water break!
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 super yummy wrap! 🙂
My RAD Life 