Despite Lupus | Living Well with a Chronic Illness
Sarah Gorman was a newlywed and successful television producer when she was diagnosed with lupus in 2001. On her blog, Despite Lupus, you can read about ongoing developments in the treatment of the disease and Sarah’s personal stories of living life with lupus, as well as engage with her very active community of followers.
It's been more than 6 weeks since my dear old dad passed away. I still miss him as much as I did the day he passed, but healing takes time. And now that I know what that feels like, I find that I am more prepared to tackle each day as it comes. Those moments of overwhelming grief are fewer and farther between. So progress!
I am still thankful for every day I had with my dad. Away from the grind and responsibility of caregiving, I am now able to freely recall instances that make me smile - moments we shared that no one can take away. Most trips down memory lane end in some sort of tears - but I'm happy to report more happy tears than sad, as time marches on.
In the month and a half since his passing, we have been busy wrapping up his affairs, and securing my mom's. The primary goal of this month has been to get their house (which has been sitting since last July) on the market. As anyone knows, this is no easy task. A lifetime of memories packed into a home does not make for light, frivolous work. But we are managing. And every time I've traveled to Indiana to do a major overhaul on the house, I remind myself that a daily nap has to be priority one. My dad wouldn't let me get away with anything less, and I don't want to let him down.
That said, sorting through their affairs, while time-consuming, doesn't even compare to the time committment involved in caregiving. It was a full time job. Bottom line.
I remember saying the same thing about managing lupus, particularly in the beginning, when you are adjusting to life with a chronic illness. It's all so new - the multiple medications, the numerous doctor appointments, the insurance claims, not to mention the debilitating symptoms that make all of the above so challenging. It just all comes so quickly and all at once - the feeling that you will never, ever juggle it successfully is so very real.
I also remember picturing my life as it used to be - without all the sick girl paraphernalia. It seemed so distant, so unattainable. That life would ever return to something manageable or enjoyable seemed completely out of reach.
And yet here I am. Happy. Healthy. Managing in a way I never would have imagined possible. Thank goodness I never gave up!
That is the one thing my dad never gave up on - managing his illness to the best of his ability. He met every day with realistic goals and a positive attitude. He didn't dwell on what he couldn't do. He focused on what he could, and what he still had to offer this world. (See? There come the tears.) He made an impact every last day he was on this earth - despite his diminishing communciation skills and compromised abilities. I will forever remember how steadfast he was. How patient. How kind.
He was a great man. An example for all. One that I don't plan on disappointing anytime soon.
Raise your hand if you have organ involvement due to lupus?
Yup. Me, too.
Since being diagnosed in 2001, my heart, lungs, kidneys and pancreas have all been compromised because of lupus. Irreversible kidney damage is a constant concern, and my doctor is always keeping an eye on my lupus nephritis (which means kidney involvement).
You know those days when you're kidneys aren't cooperating? Sometimes it's after learning a 24-Hour Urine test result, or when signs or symptoms are heightened and you, think, "Oh, boy. Here we go again."
Aurinia has created the ALL IN "Send a Message to Your Kidneys" campaign for that very reason!
Dedicated to creating awareness and providing support for Lupus Nephritis, the website features great personal stories, resources, management tools, and now, a Message Wall for our Kidneys!
My message above -"Show me what you need, Kidneys. I'm ready to listen" - encapsulates how I feel about my lupus nephritis. I realized early on that I had a huge role to play in the management of my disease. I needed to sit back, and listen to what my body was telling me. Mid-day rest, extra sleep at night, less stress, less work, more help, different diet, change in medicine - I hadn't been able to hear the cries my body was sending me, until I actually stopped and listened.
So here's hoping you take a few moments today to just listen to your body, and learn how to meet its needs.
You can even leave a message to your own kidneys on the ALL IN website. Just click here and you'll be able to tell those kidneys of yours how you really feel!