This blogger poses the question of whether you can have it all – a successful career and family – AND RA.
It struck me because I was recently contemplating a post about the struggles of being an entrepreneur with a chronic disease.
Like many careers, founding a company is highly time-consuming, stressful and mentally taxing. All things most rheumatologists will recommend you avoid.
“Take it easy and live a less stressful life,” they’ll wisely tell you.
These doctors don’t work at a technology start-up. This is demanding work where the variables are always changing, money’s always lacking, and stress is always high.
But, hours can be somewhat flexible and you’re rarely, if ever, expected to wear heels.
I’m managing this balance of being an entrepreneur, with all the ups and downs, long hours, and uncertainty, with having RA, and all the doctor’s appointments, blood tests, drugs, brain fogs, pain, swelling, headaches and fatigue that goes with it. But add a family to the mix and I struggle to imagine it working.
Let’s hope I sell my company for a billion dollars before I settle down and have a family (hey, here’s hoping). :)
How are you balancing it “all”?
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!