From a FaceBook post dated February 7, 2019
One of the tell tale signs/symptoms of lupus is a facial rash. Many refer to it as a butterfly 🦋 rash because it fans out and over both cheeks, bridging the nose (the medical name for it is a malar rash). Interesting Fact: this is why the butterfly is used to represent lupus.
When I first began having symptoms, prior to diagnosis, it was one of the first things my mom noticed. The rash comes and goes. However, its appearance has always been a signal for me that my lupus was/is in an active stage. To most, when I’m sporting the rash, my cheeks just look extra rosy. Some think I’m just becoming flush from over exerting myself. When the rash is at its worse, not only are my cheeks extremely flush, but they also get super hot—sometimes causing me to break out in a sweat. Although uncomfortable, these extreme instances of my rash usually only last a couple of hours at most.
If you read my post last week about my doctor’s appointment, I mentioned one of the first indicators that this most recent flare was coming on was that my cheeks got extremely hot. I’ve been surprised as I walk through this current flare because my butterfly rash hasn’t abated like I’m used to it doing. Even as I write this (a week into this most recent flare) my cheeks are burning up. They have felt this way so long that my skin has started to sting (almost like a sunburn). It’s definitely not the worst thing I could be dealing with, but it most assuredly gets old.
So you might be wondering why I took all the time to explain this. I’ve come to realize that many people don’t know a lot about lupus, other than it’s name and that people with the disease generally don’t feel well. I’ve also come to realize the only way to help people learn about this disease is that those of us who live with it every day have to be willing and vulnerable enough to share glimpses of our stories—snippets of what our lives are like living with this day in and day out.
From a FaceBook post dated February 2, 2019
Living with Lupus is not my most favorite thing in the world. It’s exhausting, it’s unpredictable, and, oh yeah, it’s painful. But I’m not unique. Many people deal with chronic conditions day in and day out. How can you help me or another friend with a chronic illness? Here’s five thoughts.
Don't make assumptions...
I know there are other things that could be added to the list. But these were just some quick thoughts I had this morning while I’m laying in bed battling with my Lupus. Btw, it’s a battle I’m determined to win.
From a Facebook post dated January 24, 2019
It’s hard to try again when you didn’t succeed the first time. Something I was well aware of as I started Weight Watchers last May for the FOURTH time. And I was even more afraid of failing when I hit the 70 pound mark.
You may ask “Why on earth would you be afraid of failing when you’ve just lost 70 pounds?” The answer is: That is right about the place where I’d lose focus and quit every other time I’ve attempted to lose weight using Weight Watchers.
...this time, it would be different.
I have been determined though, that this time, it would be different. That no matter what, I won’t give up and I won’t stop until I get where I’m supposed to be. But that doesn’t mean it hasn’t been hard. The last 3 or 4 weeks have been brutal. I’ve struggled to stay on track and not lose sight of why I’m working so hard to lose weight.
I have been so happy with the results I’m seeing in the mirror and I just plain feel better. I’ve been repeatedly telling myself that the hard work is worth it.
Well, today I hit a personal milestone. As of this week I have lost 82 pounds since May (I lost 5 pounds in the past week 😆). Again you might be wondering why the random number of 82 is a milestone. It’s because I have now lost more weight than I have in any other previous weight loss attempts. I’m also now only 18 pounds from reaching that huge milestone of 100 pounds down (ignore the squealing you hear in the background).
I’m more convinced now than ever before that I’m going to finish this race and make it to my goal. Whatever project you’re working on...whatever goal you’re working towards. Don’t give up. Believe in yourself! If I can do this, you can do what you’ve set out to accomplish too. 💕
“Jesus looked at them and said, “With man this is impossible, but with God all things are possible.””
From a Facebook post dated January 1, 2019
I want to take a moment to share something very private. Something I really haven’t talked about except to few close friends and family members.
I saw these words as I was scrolling through Facebook:
Dear Infertile Teacher.
I couldn’t scroll by. I had to read it. And although the words were written by another teacher, much of what she was reciting was my story. At the end of the post she says, “...maybe 2019 is about telling the truth.”
The truth is I didn’t find the love of my life until I was in my 40s. We both had our hearts set on having a baby. We went to work toward making that happen as soon as we were married. 😉 I love my two grown daughters more than life itself. If you know our story, you know I adopted them when they were 8 and 11. I’ve never had the experience of being pregnant. It is something I desperately want to experience and I know Robert will be the world’s best Daddy.
But life doesn’t always work out the way you dream it will.
But life doesn’t always work out the way you dream it will. After almost a year and a half of trying to get pregnant, Robert and I were told we were infertile. That word has the power to break hearts and it has broken mine.
That is not how the story is supposed to unfold. I may be in my 40s, but women in their 40s have babies everyday—why not me? I have to say I have the most wonderful husband. He has held me, loved me, and encouraged me through many tear filled nights. But the yearning for a baby doesn’t magically go away just because a doctor has told you it’s not possible though conventional means.
The author of this post and her raw honesty resonated with me. We have been told our only hope of having a baby is through embryo donation. Anyone who has dealt with infertility, knows that insurance doesn’t cover fertility treatment, and what we’re talking about comes with a large price tag. Something far out of the reach of a family living on a teacher’s salary. This reality just furthers my grief.
I know God in his infinite wisdom has a plan for us, but it doesn’t make this reality hurt less.
I know God in his infinite wisdom has a plan for us, but it doesn’t make this reality hurt less. I realize as I write these words, we’re not the only couple walking through this as evidenced by the blog post that stopped me cold. However, I also realize with my own reticence to talk about it, it is a topic we don’t always openly discuss.
For those walking this same road. You are not alone. I’d be happy to talk with you, hug you, and walk beside you as you walk this road.
I've often thought of myself as a warrior. I've had many times in my life where I've had to dig down deep and face an obstacle head on. But as much as I like Wonder Woman, she is just a character in a comic book or on the big screen. There is however someone who has been my source of strength my entire life. Someone who has given me the strength to put on my armor and battle another day when I knew I didn't begin to have the energy. My source of strength is solely found in Christ. From early in my childhood I have learned that I can conquer any battle with His help.
Before I proceed any further with this blog I want to make it clear to everyone where I find my source of strength and hope. I've experienced much in my 43 years of life. Some of those experiences and stories I hope to share here. But you need to know I couldn't have made it to today, being here in this place writing these words, without Jesus Christ being my sustainer.
A bit of housekeeping....I have created a Facebook Page as a companion to this blog. If you follow my Facebook Page, you will get notices on Facebook when I update my blog. You can click on the Like button on this page or you can go to www.facebook.com/sharonrickskeil and like the page.
Also, the next several posts to my blog will be posts I've copied from Facebook. I got my feet wet with blogging by writing several long posts on Facebook. I'm going to repost them here so everything is one place.
Have a blessed day!
I have always enjoyed writing, but I haven't always made it a priority. I think words have power. The power to lift up, or tear down. The power to inspire, to encourage, or to make you think deeply.
There is something satisfying about seeing my thoughts written down in black and white. I like having a record of the things I'm thinking about and learning about so that I can reflect, learn, and grow from them.
I've played with the thought of having a blog off and on over the years. I've even attempted to start one a time or two. Recently the thought of having a place to order and share my thoughts has pressed heavily on my heart. I decided I want to have a place where I can share those thoughts and glimpses into my life.
You have to start somewhere, and I'm stepping out and starting right here, right now by establishing this blog.
As I contemplated the creation of this blog, I began to think about what I would call it. I wanted something that reflected who I am and the things I love. It didn't take long before my brainstorming lead me to one of my favorite things--Wonder Woman. It doesn't take much time being around me before you realize I LOVE anything related to Wonder Woman. People know she's my favorite super hero, but not many people ask me why she's my favorite. I'm drawn to Wonder Woman because I think she's a good role model for young girls. I like that she believes in truth and honesty. I love that she bravely fights for those who don't have the power to fight for themselves. She is a fierce, brave warrior who doesn't give up even when things seem impossible.
As I thought about all of this, I knew I would want my blog to have some allusion to Wonder Woman. I also knew that I want people to know that although I can be tough when needed, I'm also fun and silly and a big kid at heart. I couldn't think of a better word to incapsulate those ideas than "whimsical." So that is how I landed on the name Whimsical Warrior.
I invite you to come along with me as I chronicle my ideas, my inspirations, and my wonderings.