My RAD first presented itself in my wrists. Later, it moved to my feet, with a vengeance. Though it is now mostly under control with weekly methotrexate and Enbrel, I do still get the occasional flare. For me, this usually means very sore and painful wrists and feet, swelling, morning stiffness, and all-encompassing, is-this-what-having-mono-is-like fatigue.
I recently came back from an incredible two-week trip to Southeast Asia. (Side note: not needing to keep my Enbrel refrigerated was a lifesaver.) But the best part about the trip was, despite long days walking many miles (I think I hit 10 miles one day in Bangkok and probably a comparable amount at Angkor Wat), I only experienced swollen, sore feet, not a full-blown flare.
The return jet lag has been pretty rough and I think it wore my body down. I was exhausted and sleeping every chance I could get for about a week. I was finally feeling more like myself. Until Thursday.
Last Thursday, I felt the inkling that something was stewing. My feet were just a little more swollen and sore than they ought to have been. I decided to go for a short run anyway, because I’m still the worst at figuring out when to rest and when to push.
Then Friday came and my feet were so sore and stiff getting out of bed that I almost fell over. I combated it with a long shower and an outfit designed to incorporate comfortable Crocs Mary Janes, which were a half-size too big to accommodate for swelling.
Halfway through my 3/4 mile walk to the office, I felt blisters forming in addition to my already aching feet. I hobbled through.
Come lunch, I couldn’t take it anymore, so I spent my lunch break shopping for a new, more comfortable pair of shoes at a nearby store. My feet were so swollen, most the shoes in my size didn’t fit (including flip-flops!). I wound up with well-insulated Reef slip-ons.
I was invited to post-work food and drinks with co-workers, which I achingly accepted. A glass of wine did make me feel a whole lot better.
Afterward, I stubbornly wanted to have a fun night out with my boyfriend. I hung for a couple hours until I just snapped. “I’m going home,” I announced, starting to cry. Of course to him, this appeared bat shit crazy, but all I knew was that if I had to spend one more second in any sort of footwear, I was gonna scream.
We talked outside and I explained myself. That sounds way more graceful than it was…I actually whined through my tears about my feet and my frustration and how I just really, really needed to be home.
“I wore my ugly Crocs because I knew it would be a rough day and they’re supposed to be comfortable, but they attacked me with blisters! My feet were to swollen to fit into flip flops that were a size too big! Flip flops!” I lamented, my boyfriend trying hard to understand how shoes, yes shoes, could bring his otherwise composed, mature girlfriend to tears. (Of course this is the moment a friend walks by, but I didn’t have the energy to explain, so I assume she thinks we were having some terrible fight).
I got home and soaked my feet, but that didn’t stop this flare from stealing my whole weekend. It was all I could do to leave the couch Saturday for a lunch date with the bf. Today has been equally sore and exhausting. I’m sincerely hoping tomorrow treats me better.
Interested in more tales of shoes driving me utterly mad? Check out A Shoe Story Part 1.
I think I can speak for many of us RAers when I say that living with a chronic disease means constantly being sold a Coachella festival worth of the healing powers of alternative medicine, therapies, yoga, salt candles, mantras, green juice, and so much more.
But they do all start sounding suspiciously the same. Do you have a chronic disease, depression, fatigue, allergies, the propensity for bad decisions, financial woes, and stress? Look no further than acai berries! They cure EVERYTHING and make you live forever!
So when my boyfriend sent me the brilliant tongue-in-cheek site, New Age Generator, I fell in love. Use it to create the copy for your own holistic site. Or to find gems of wisdom such as this:
As you believe, you will enter into infinite choice that transcends understanding. Faith healing may be the solution to what’s holding you back from a breathtaking explosion of peace. Through aromatherapy, our third eyes are opened by synchronicity.
Also of note, Wisdom of Chopra (as in Deepak Chopra). It generates all the Deepak wisdom you could ever hope for, like this:
Experiential truth is the foundation of new potentiality.
You’re welcome. :)
I was going to write a blog post about how today I just feel exhausted, slow, off, and really irritated about it. My wrists hurt, my fingers hurt, my body’s heavy, and I’m just tired. Too tired to write a post about it, but this article sums it up better than I could right now anyway:
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!