When I was first diagnosed with Lupus I was warned to stay completely out of the sun, use sunscreen, and wear a hat anytime I leave the house. I did not like that warning and decided, like not taking extra money from the bank in Monopoly, it wasn't a rule that applied to me.
One of the main cause of early death for Lupus patients now is non-compliance. 25 years ago you were expected to live only 5 years and die from kidney failure, heart disease, or infection. We may not have a cure but treatments have definitely improved our life expectancy.
I was really surprised to hear non-compliance was so rampant among patients. Looking back at my own history, even this past week, I can see non-compliance making an impact on how I feel. I remember being 19 and going to the tanning bed. There was even a form that asked if you had Lupus. I always checked no. What's 15 minutes in a tanning bed going to do to me? There is nothing like a Lupus flare with kidney disease to give you a wake up call. I was no longer worried about being pale, now I worried all my hair would fall out, how to lose the 60 pounds I gained in 3 months from steroids, or if I'd live to my 20th birthday. Just last week I made a quick trip to the grocery store. No sunblock. No hat. I was in bed by 8 and still did not feel well the next day. So..um...yeah...I may have a thing with non-compliance.
When I was young, even though I had a sister who lost her battle with Lupus after 5 years, I just didn't think I would become that ill. And after that flare from the tanning beds, I thought I would take better care of myself...But it's hard...Really hard to be compliant when you live with an illness every day.
So now I'm experienced (older) and we have a daughter with Type 1 Diabetes. Both of us fighting a daily battle with illness where non-compliance is a dangerous option. I wonder what kind of example I am setting when I forget to take my meds or just don't want to wear a stupid hat. It's not a good one.
A few months back our daughter's A1c (average blood sugar) was almost 13. 6-7 is a healthy average. It came down to non-compliance. She had everything she needed to keep her average down. But she was tired of doing it day after day. And I understood, but I didn't want to see her suffer. Just like my husband and kids don't want to see me suffer.
It was time for a new plan to help her, encourage her, or as Jim called it we were like two vultures on her, but it made a difference and we have a ways to go but she's in the single digits!
Sunny and I share a lesson in grace and forgiveness. Having health issues is frustrating, overwhelming, and really just plain sucks some days. But it's the life we were called to live and we have to do the best we can. This includes making mistakes, but then giving yourself grace, and forgiveness. Then moving on and allowing it to be a lesson in compliance and perseverance.
And sometimes you may need a vulture to be after you.
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