Posts Tagged remission
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.”
GRIT: noun – firmness of character, determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, my vitamins made me nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.