Thursday, October 2, 2008

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.

13 comments:

Anonymous said...

E-I am so proud of you. You are handleing this like a champ. You are one of the strongest people I know and I know you will make it throught this so gracefully. You have to because, like so many others in your life, I need you. I can't do this(raise two crazy boys, live with my hubby somedays, and get my thin self back) without you. You are an inspiration to so many and I'm not sure you know that. I'm here for you no matter what, watching kids, doing household stuff, or even just to listen, cry, or drink with. Just call.
Love-Beth

slsk said...

I just got a moment to read your posts. My heart and prayers are with you! Our friendship is so very new, but I (and you agree) that we're easily connected. Please know that I will pray for you in the days ahead as you wrap your mind around this. You have a great soul and I believe in you. Hugs - Sarah

Scarlet O'Kara said...

I am so very glad that I was able to make you smile with my silly little post! That was my intent and it worked.

I also wanted to let you know that my thoughts and prayers have been with you. You are going through a rough time and I pray that our dear sweet Lord will enfold you in his loving embrace.

Anonymous said...

I had no idea! I am pissed for you, too! Parents are supposed to leave you china sets, old photos, and family traditions, not Lupus! pbbbbbpbpbpbpbpbp (blowing raspberries!) You truly are handling this like a champ - looking on the positive that you learned a lot from living with and helping your parents. Have all the pity parties you want - I get stuck in them for far less sometimes! I'm here for you in any way I can be. I'll watch the kids, help out at the house. . . and since Beth offered, I can sure join in and drink with you too! ha ha. Hang in there - we're all praying for you,
Michelle

Anonymous said...

You know, after a few minutes of (rather shocked) reflection, I am glad you know this now so you can have people helping you with discomfort, pain, etc. This isn't the end, it's the beginning, or rather, it's the end of not knowing and feeling bad, to the beginning of help, healing, relief and love in ways you didn't even know before. I miss your parents for you, too, E! Miss you, e-mail whenever you'd like, I'll drive in, whatever!! :) Angie H.

Anonymous said...

Hey girl - you're totally going to beat this!

Love you,
K

Anonymous said...

Elizabeth- Just read today's posting and am very proud of you for sharing your feelings. I will be collecting my thoughts and share them with you in a few days. Just remember that No matter what trials we have, God never gives us more than He knows we can handle. I also know that He has more faith in me many times than I have in myself, yet it always proves out in the end that His word is true and it works out for the best. As always I am available to listen if you need a ear to listen. Call with your cell to my cell any night after 9:00 PM as minutes are free and the kids should be in bed asleep. # is 402-879-5637. You didn't mention how Dan is handling this. How is he coping? Does he have a confidant to release his feelings? Take care and God bless you and your family. Poppa Jack in Nebraska.

Anonymous said...

lupus schmupus! suck it, lupus! you're NO MATCH for E. Steele, yo! So i went to the lupus site, and i must say dude that sucks but i must also say this is something peeps live with. reminds me o' a chap i knew with RA -really hit him hard at first, but once he tweaked his lifestyle and figured out what worked for him it was smooth sailing. i don't mean to minimize your plight. my heart goes out to you, but SUCK IT, LUPUS! - TRACY
ps - thx for the blog link. your's is way bettah than mine.

Catrina said...

E - if there is anyone in this world I know that would take this Lupus bullcrap head-on and fight it with everything she had and come out the conqueror, it is you. You will be on top one day, putting your proverbial victory flag up, thumbing your nose at this diagnosis and saying THHHHHHPTTTTT. (I think thats how you spell what a raspberry sounds like). You hang on, keep your chin up and remember, you are deeply loved by many, many people who know how to pray.

Anonymous said...

Hi Neighbor, I had no idea what your family was going through. Thank you so much for being so open and honest with the news. Stu and I will be praying for you, Dan and the kids! Please let me know if there's anything we can do! I checked out the link that you added about Lupus, because I wasn't sure what it was at first. You are so strong though and God's grace is going to be with you through this!

Anonymous said...

Hey E - The only thing that come's to mind is "that SUCKS!!" As many others have said, you are one of the strongest women I know and I know you will take this bull by the horns and plow through. With that being said, you are also allowed to be pissed off and to let others take care of you! That's what we are all here for. You are always the first one out of the gate to show others your love and support and now it's our turn to do it for you. We'll talk soon but please always know I'm here for you for whatever you need! Love - Lynna :)

Anonymous said...

Elizabeth-
I am a little speechless right now. All I can think of to say right now is that we're praying for you, Dan, and the kids. You have always been a strong woman with faith in God - He will be there for you in these tough times as He's there in the good times. Hang in there and let me know if there's anything I can do for you, or call if you just want to talk. God Bless - Jeff 770-364-1002

Gretchen said...

You are very important to a lot of people. Don't ever forget that and when you need to vent or just get your feelings down, please do so. Having a chronic illness, I do know all too well what it means to have that option.

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