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.
If you’ve followed my blog at all, you know I’ve tried lots of different diets to help improve my RA symptoms and circulation issues. One that I just haven’t been able to stick to is cutting out caffeine.
I’m sorry, I just don’t know how to function without the stuff and green tea in the morning…it just isn’t the same as a nicely brewed cuppa coffee (or an almond milk latte – mmm mmm good).
I made an awesome discovery recently that is alleviating my guilt of coffee drinking: Add a bit of cayenne pepper and a healthy dose of cinnamon to your coffee grinds in the morning and, walla!, fancy morning coffee with the added benefit of two inflammatory/pain-reducing, circulation-boosting superfoods. I haven’t tried it with ginger yet (another inflammatory/pain-reducing, circulation-boosting powerhouse), but that may be worth a shot too.
Try it and let me know what you think!
I recently finished Lean In, an inspiring call for girls to become business leaders by Facebook COO Sheryl Sandberg. As a woman in the technology industry, I see firsthand the absence of women – not just in leadership roles, but in the whole field. Generally, the women that I do meet are not leading, but are filling secretarial or HR positions. So I absolutely encourage everyone to read this book and consider encouraging the girls and women in your life to believe in their potential as leaders.
BUT, that’s not why I’m writing this post. I’m writing because as I read Sheryl’s insistence that workplaces need to make better efforts to accommodate pregnant women and new moms, or that women shouldn’t just drop out of the workforce the minute they become – or are thinking about becoming – pregnant, I couldn’t help but seeing the parallels to people struggling with chronic disease or disability.
So, I would like to encourage not just women and girls to Lean In, but all of us struggling with disease, disability, fatigue or depression to Lean In as well.
When I was first diagnosed with Rheumatoid Autoimmune Disease (Rheumatoid Arthritis), I read some stark and discouraging statistics. Headlines in the Huffington Post screamed “Rheumatoid Arthritis Unemployment: 1 In 5 With Disease Stop Working 2 Years After Diagnosis.” The Mayo Clinic goes on to pronounce that within five years, that number becomes 1 in 3. While medication is beginning to change this trend by allowing RAers to avoid severe disability and maintain their jobs, I think we need to take a hard look at these numbers and encourage more accommodations in the workplace and more “leaning in” from those struggling with RA.
Of course, early unemployment does not just effect those with RA or autoimmune diseases. The U.S. Department of Labor says people with disabilities are more than twice as likely to be unemployed and only about 20 percent of those with disabilities (versus nearly 70 percent without) are participating in the labor force at all.
This is a shame because people with chronic diseases are more likely to suffer from depression (and vice versa), and losing your sense of purpose through career can add to that likeliness. A career can take you out of the job of being sick and distract you, reminding you that there is way more to life than being a patient.
So, here’s what I want to see a la Sheryl Sandberg:
- Unless there is no other option, people are often discouraged to share their disease or disability with their employer. The thinking goes, your employer will be more likely to think you’re not up to a given task, and more likely to fire you or pass you over for a promotion. Employers need to be more open with employees, and be willing to have these tough conversations and make appropriate accommodations that allow people with disease of disability to thrive at work still. This could mean later starts in the morning, more flexibility on hours to accommodate doctor’s appointments, extra tools in the workplace to aid those with disability or chronic pain, more breaks during the day to reset, better mental health and wellness programs… Whatever it means for the individual, it needs to be a conversation that can take place without fear of losing ones job or professional potential. (Reminds me of the ladies who are scared to share with employers that they might want to have a family one day.)
- When diagnosed with a chronic disease or disability, you suddenly find yourself with an extra job (sort of like parenthood, but, in this case, you didn’t want it at all). This new job could be full or part time depending on the severity of your situation. Either way, it is difficult to find yourself suddenly trying to manage this new job and your old one. You may find yourself sacrificing projects, hours or quality at work to deal with your new “job”. You suddenly have doctor’s appointments, long calls with insurance companies and need more time to do everything… Without owning up to your situation and having understanding about it from your employer, it’s hard to balance this without suddenly appearing more flaky.
- We need to change the culture of shame that surrounds chronic disease (including mental disease) and disability. As a society, we can not keep blaming people for their disease or depression. We need to stop discouraging sufferers from speaking up about it. We need to encourage people to openly seek help and thrive. The pink ribbon campaign has done a great job starting the conversation on breast cancer and encouraging those suffering from it to share their stories and their families to openly support them. Let’s do the same for the 23.5 million (or 50 million according to AARDA) in the U.S. suffering from autoimmune diseases, the 14.8 million Americans suffering from major depression (and many millions more suffering from general depression or anxiety disorders), and the 50 million Americans living with disabilities.
Got any thoughts on how else we could help people with chronic disease and disabilities stay in the workplace? I’d love to hear them!
It’s not a cure, but a better way to manage pain could certainly change the lives of millions of people.
Supplements have seemingly been in the news a lot lately, and not for their curative powers. As someone who takes many supplements, especially the doc and naturopath recommended fish oil, this article’s worth a read.
NYTimes: What’s in Your Fish Oil Supplements?
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!