Lupus Walk

My team, Steele Butterflies, completed the Lupus Walk this morning (including an unexpected half mile). It was a good time, and nice to have Dan, Katie, Jackson, John (my father-in-law), and especially Catrina and Lizzie there with me. After the walk, we sat in the park and enjoyed the cool weather, and had a light lunch. It was so peaceful and uplifting.

Thank you also to those of you who donated to our team. We raised a total of $365 in ten days. Wow! Thank you, thank you, thank you to our donors. I know every dollar was given because of your love for me, or someone you know with Lupus.

As the weekend comes to a close, I'm feeling much better mentally. I'm ready to tackle Lupus head-on, and I've had time to let the shock wear off and let the fighter in me come out. A recurring theme kept popping up over and over this past week - during research I've done, conversations I've had, TV shows I've watched, and even last night's sermon at church: I have to slow down and reduce stress in my life. I'm not quite sure how that is going to manifest itself, but I know that I'm going to have to make a shift in priorities. I heard a quote this week: "You were not 'in the moment,' you were trying to get 'to' the moment." That's how I've been living my life: so busy busy busy and running from one task to the next. I need to slow down, be in the moment more, and learn what is necessary and what is just fluff. In yesterday's sermon, the pastor said Nehemiah knew "when to push and when to push pause."

During a song at church last night, one of the lyrics was "You are healing me." I needed to hear that! God is taking care of me, loving me, lifting me up on eagle's wings, and speaking to me through the people He's placed in my life.

Update

I don't know what else to title this post, because it's going to be filled with a hodge podge of stuff. Forgive me as I just ramble and give you some bullet points. It's the best I can do right now.

• First, let me start with gratitude. Thank you to those of you who have called me, met me for coffee, donated to my Lupus Walk team, posted comments, prayed for me, watched my kids, and just let me crumble the past few days. I am loved, and you have shown me that the last three days. Thank you.
• How am I feeling? Stunned. Shocked. Pissed. Achy. Overwhelmed. Alone. In turmoil. In denial. On edge. Lost. Scared. In a fog. Thankful. Inspired. Irritable. Weak. Empty. Unsure. Ugh. I'm tired of talking about it, and then I'm frustrated that I'm not talking about it. I'm contradictory right now, not making much sense. I'm worried. What if I pass it on to my kids, like my parents passed it to me? What if I brought this on myself with negative thinking? I keep telling myself to stop being a baby. I feel like I'm spinning my wheels. At least I'm not waiting for the other shoe to drop anymore. (A little gallows humor there.)
• I still have lots to learn about Lupus. One of the best resources I've found is the "About Lupus" section of the Lupus Foundation website. I know y'all have lots of questions about it too, so go read it. (That way I won't have to explain it over and over... when it's something I barely understand myself!) I'm also looking forward to the Lupus Walk on Sunday, and getting to meet others with Lupus. I'm hoping to get some direction and help. I feel like an idiot about the whole thing, like I don't know anything. There's so much to learn, and so many questions for my doctor. (Am I even seeing the right doctor anyway?)
• I'm praying. Lots. Asking God to help me feel Him. Asking Him to just hold me. Just hold me. I know He's bigger than this. I'm begging my parents to show themselves to me in some way, and help me feel their presence. You have no idea how many times I've wanted to call them the last three days. I did get to talk to my stepmother, and she helped me answer some questions, which was good. And she was pissed off for me, which was even better. (I've not heard her cuss like that in a LONG time.) But... if I could just hear Mom or Dad's voices. Oh. Let's move on from this topic, before I dissolve again.
• It could be worse. Yes, I keep saying that to myself. Especially when I heard the news on Monday (the same day of my diagnosis) that a friend/neighbor had a stroke last week. He's my age! Lupus is not so bad when I think of the other diagnoses out there. But, ugh. Is it wrong of me to not want anything? I talked to a woman at the Lupus Foundation about the walk on Sunday, and mentioned that I was just diagnosed. She said, "Oh, isn't it a relief? To know what's been going on and have a diagnosis finally?" Sort of, in a way, I guess it's a relief... but not like she meant. It's a relief to have a plan and medicine I can take, but it's also devastating because I saw my parents fight Lupus. I KNOW what it does. I think I'd rather be blissfully ignorant.
• And here's the contradictory part of me again: I'm lucky that my parents had Lupus. My diagnosis came much quicker than it does for other people. I've heard of people (like Mom) who spent years feeling like this before they finally got a diagnosis. I've only spent four months feeling like this. Lucky, lucky, lucky. Now if this darn medicine would just kick in and start working!

I think I'll stop there. I could keep going about all my worries and fears, but I'm going to get up from the computer, take my ibuprofen, and go focus on something else. Besides, Jackson is crying in his crib and I can't focus anymore anyway.

Steele Butterflies

I decided to participate in the local Lupus Walk on October 5, which is coming up in just over one week. This was a decision I made after seeing my rheumatologist on Monday, so I'm kind of scrambling to get things together and organized. Before I made the decision, I emailed friends and family to see if anyone might want to join me. I got lots of positive feedback, so I decided to take the plunge.

My friend Catrina is going to walk with me, and her sister is also joining us. I have one or two other friends who are considering walking with me too. I am excited to have their support!

Catrina and I decided to name our team Steele Butterflies. Steele is my maiden name (so that part of the team name will memorialize my mom and dad). The Butterflies part of the name is because butterflies are the symbol for the Lupus Foundation, and also something that reminds me of my mom (she made a comment about becoming a butterfly when she was in hospice).

If you'd like to read more about the Lupus Walk or Steele Butterflies, or if you'd like to participate in some way, just check out our team website. Thanks!