Wednesday, March 13, 2013

A cure for lupus: What if?

While I was in Memphis shooting the lupus video I blogged about a few weeks ago (video to be unveiled soon - I can't wait!), the young lady spearheading the video project asked me a question. It was a poignant question - probably the best question that was asked all weekend: What would my life look life if there was cure for lupus?

It's such a great question, one that many lupites have probably asked themselves many times before. And I should have been able to come up with a really great answer. But unfortunately, in the midst of the interview, one in which I talked freely about the notion of "living well, despite lupus", and making the most out of the life I'd been given - I just couldn't get there. I couldn't switch gears and talk about life WITHOUT lupus, because I've tried so hard to embrace my life WITH lupus. Dealing with the reality of the situation, that I have lupus and it's not going away anytime soon, has helped me tremendously to persevere and overcome. The facts are these: I have a chronic illness, I have to figure out how to live with it, and I can either do so kicking and screaming,  or I can figure out a pro-active, positive, productive approach that will ideally lead to a happy, healthy, fulfilled life, with lupus in tow.

And that's basically how I answered the question. Not very direct, and not the answer I'm sure she was looking for. But a lupite can only do what a lupite can do.

But now that I've had a chance to mull over that question, outside of the context of trying to make lemonade out of lemons - I've been able to come up with a few things that would indeed, be different, if there were a cure for lupus:

No More Nap: I wouldn't have to take a daily nap; I wouldn't have to rely on someone else to care for my girls every afternoon; I wouldn't have to decline Deirdre's invitation to go outside and play everyday around 2pm; I wouldn't have to come home early from luncheons, cut short shopping trips with my friends, or schedule each and every day around my 2-4pm napping ritual.

No More Doctors: I wouldn't have a schedule-full of doctor's appointments to juggle; I wouldn't have a pile of insurance paperwork to file every month; I wouldn't have to worry about hitting the prescription drug cap on my insurance plan; I wouldn't be on a first name basis with my pharmacist; I wouldn't have to get weighed every few weeks at a doctor's office; I wouldn't have to find time to get chest x-rays, conduct 24-hour urine tests, or the like.

Lifestyle: I wouldn't have a slew of pills to take everyday (although since I do, the Pillfold is a nice touch!); I wouldn't have to worry about a swollen finger, an achy joint, or a patch of hair loss, much less any other symptom I try to dodge daily;  I wouldn't have to clock my time in the sun; I wouldn't have to spread out my travel in order to "rest up" in between trips; I wouldn't have to strategically schedule flights, car rides, school activities, outings, or errands, just to make sure I didn't overdo;

Now, that said, I don't want to dwell on these observations too much. Yes, they're all true. And sure, lupus can be a real party pooper when it comes to living life. But I have so many blessings to be thankful for. I've made so much emotional and physical progress in regard to my disease, it's hard to be resentful. My attitude toward lupus and life with the disease started to improve the moment I decided to leave my resentment and anger at the door. The life I have today, limitations, medications, and all, is one that I've learned to love. It's a life worth living.

But I will say this - just because I've learned to "make do" with lupus, doesn't mean I wouldn't prefer that my girls not have to. If there were a cure for lupus - the most impactful change in my life would be that I'd never have to worry about my girls living with lupus. And I like the look of that.




2 comments:

  1. Hi Sara- I just recently came across your blog and have been enjoying reading your posts! I'm 26, recently married, and just diagnosed with SLE "officially" a week ago, even though I've had symptoms for a really long time. Now that I have an answer for why I've been sick for so long, I'm ready to move forward and make whatever adaptations in my life that I need to in order to be as healthy and happy as possible. I don't have kids (or even pets yet!) and I can't even imagine having to care for other people, too. Take care!

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  2. Laura--thanks for commenting, and welcome to the world of lupus!! Sounds like we have a lot in common, and i wish all the best for you as you learn to incorporate lupus into your life, newly married, mid-twenties and all! i'll look forward to hearing from you again. thanks!!

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