I’ve got a golden ticket!

Now that I look back, it’s interesting I titled the main page of this site “living with ???” rather than “living with lupus.” Last week Joel was at Mayo and it was a great decision to go as it provided more answers than we had before. But it also brought some confusion. We have three doctors believing Joel has lupus and one doctor that says he does not. We have one doctor who says the prednisone is saving his life and another that says he should taper off of it so we can see what the real symptoms are. We must admit that we are both tired and frustrated. We put our hopes in a golden ticket that would say you have ______ and just take _______ and you’ll be fine. But that didn’t happen and we both fell hard.

At first I felt ashamed for feeling this way because so many had said they admired our strength and I felt like I let everyone down. But then one friend said it was okay to lay down all our weariness, confusion, and frustration to God. So I did and what I heard was, “My hope is in the Lord.” It’s not in any medical doctors or treatments, it’s in him. My focus is more clearly on him now and I understand more than ever, there may never be a golden ticket. But that’s okay because God is in control and he will take care of us, no matter what. In fact, God is the golden ticket, the magic pill, the whatever you really need! Woo-hoo!

Joel and I are taking the next couple of days to rest and then we plan to start fighting this unknown disease again on Wednesday. He sees a local doctor here to get the referrals he needs for specialists and then sees the rheumatologist on the 11th. We also have a game plan written down. So we rest now, and fight again soon! As always, thank you for the prayers and support! -Kayla



  1. I know it’s hard to take a “day off” from fighting something that is plaguing you daily, but enjoy your break and enjoy time with each other. Miss you guys something horrible, tonight!

  2. Never be ashamed of being vulnerable…you haven’t and won’t, let anyone down. This is a journey. It would be weird if everything, always was based in strength and positivity. In our weakness, is when we find strength…superhuman strength. You guys have an amazing prayer cover of people who love you and a God who wants it all. So rest, refresh and renew. And remember, “Golden Tickets” usually come with a chocolate bar and a weird guy with a funny hat singing in your ear. That would only add stress to already stressful situation 😉

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