I can get very down when I’m in extra pain, or when I fall and get hurt. I get especially depressed when I’m going through it alone—in an empty house because everyone is off living their lives.
Listen, I’ve had CRPS in my left foot for 18 years, but it got significantly worse six years ago. I have processed negative emotions repeatedly. They don’t just go away. We don’t get over it, because it’s always there.
This is a problem, not only for us but for everyone we live with and love. I must point out here that CRPS has been dubbed the “suicide disease” for a reason. It’s hard to grieve the life I thought I was going to have, and to look at such a painful and lonely future.
I realized today that I’m disappointed in God. I’ve worked through being mad at Him more than once, but I never used the word “disappointed” before. I’m disappointed that my life is not full, rich or abundant. I’m not fruitful when I spend days in bed. And the only thing I want to do is serve God. I suppose the disappointment is that it’s hard to see my life becoming more than what it is today. It’s hard to see how I am going to be a good disciple from where I’m sitting. That hurts.
Don’t get me wrong. I do have hope. It’s just cloudy when there’s so much pain.
So, I must live one day at a time.
One day. What I can do today is pray. For all of us who live with pain and suffering. I pray we remember that God’s grace is sufficient and that when we are weak, He can be strong through us.
I love being out in the sunshine. Plants need the sun to survive and so do I.
I decided to re-pot a plant today and started thinking about how we often need a change at our foundation. When our roots can’t breathe, we suffer.
I often feel like a plant that needs to be re-potted. The pain of CRPS is smothering. It stops me in my tracks, holds me back, makes me want to scream. And the hard part is that I want to do so much. I want to drive again. I want to hike in the mountains. I want to walk on the beach.
At the same time, I’m doing so well. I’m writing more. I’ve written and published another book—six now. Learning to play my violin. Spending time with God. Enjoying my family. I feel like I’m really serving God by walking in my purpose.
And, I feel hypocritical. I know my life is amazing in so many ways and I love and appreciate it, yet I hate the CRPS part. I feel guilty about that. Shame even. And it’s not even my fault. I didn’t give myself CRPS, yet I blame myself. If I only lived more positively, or never sprained my ankle…. It’s crazy.
I know I need to press into God when I feel this way. Give me a few, I’m going to grab my Bible….
That says it all, “…live as one who has died from diseases… you’ve acquired new creation life which is continually being renewed…”
I’ll keep my eyes on Jesus and continue the good work I’m doing—living despite the pain.
I’ve spent too much time sitting at my dining room table with my best friend — I mean my laptop. It’s what I know. It’s what I do. A chef cooks. I write and design.
So, I’ve been getting up more often not wanting another trip to the ER. I have been practicing my violin standing at my patio door with the sheet music taped to the glass. I’m thinking of investing in earplugs as I shift my weight from side-to-side to get off my CRaPS foot as much as I can.
All-in-all life is amazing. God is good. The flowers are so fragrant and beautiful in the front yard that I can’t help but grin. It’s curious how the pain dissipates when I focus on the wonders of God’s holy creations.
Like us. Humans. We are complete mysteries. We are fragile and indestructible. We are weak and we are strong. We are loved and cared for without understanding.
If anyone questions my love for Jesus… I can only say that I’d rather live a life of devotion and love instead of one full of drama, loneliness, and emptiness. God is my strong tower. He is my hope and dreams.
CRPS can’t get me in His arms. I can’t do anything in life without Him.
So, with or without Jesus create, make, laugh and love.
Lots of Love — One Day at a Time,
P.S.: I want to see your art, hear your songs and let you know you are loved. Email me at CRPSInsideOut@gmail.com.
I love to do my nails. I always did them on Sunday afternoons when I used to work. These days I’m not always able to do that, but I really enjoy it when I can. My polish collection has dwindled but I still have some fun colors.
I joyfully used bright colors with glitter accents whenever I could. I had my nails, my hair and my boots for beauty because I felt had to be plain at work. I chose to go business formal or casual in solid grays, blacks, and tans. I didn’t need the extra attention wearing florals and pretty pinks. That glass ceiling got lower when I dressed like a girl. Just saying.
I know that when I can enjoy the little things, I feel less pain.
It’s a distraction and as you may know by now, I am all for healthy distractions. Anything that can keep us off the opioid drugs and any other medications that have extreme side effects. We don’t want our organs shutting down—these are often the “complications” that CRPSers die from.
So, I encourage us all to find some little things we can do for pain management. Little things that are enjoyable, hopeful and full of loving self-care. Take the time; it’s worth it.
So, I was calm, cool and collected for my disability hearing a couple weeks ago (Okay, maybe not.) and one of the judge’s first questions was about my horse. I lost it. I started tearing up immediately. It was so hard to talk about.
I miss him so much.
He was abandoned at the ranch where I had horses before, and the owner let us take him over. My husband is so great. He works there for the board and feed on the weekends, so he gets to see Remi and ride him. And he keeps up on the stable drama for me (Not that drama is stable….).
I miss the smell of the ranch and Remi’s neck. I miss the dirty boots and long, sweaty rides in the foothills with some good friends. Heck, I don’t even mind the flies much this time of year.
I think I’ll have my husband take me to see him soon. I can’t wait.
One day at a time,
P.S.: I’ll take some pictures!
P.S.S.: Listen to how I’m doing without my horse in my life daily:
Episode 7: I Miss My Horse
Not being able to ride or see my horse in way too long has really affected me emotionally. Riding was my favorite outlet for stress and without it, I’m struggling. My horse’s name is Remington and he is amazing. He is the best of all my past horses rolled into one. I hope to be able to see him again soon.
I played Violin in elementary school but don’t remember much more than my teacher repeatedly telling me to adjust my grip on the bow. Over the years I’d think I wanted to try to play again but I would dismiss the thought as a fanciful dream. Recently, the urge has grown.
I figured that if I could get an inexpensive one to see if I really want to play or not, I could invest in the dream in the future or let it go.
So, with some relearning and preparation, I am ready to begin. The Type A part of my personality has already risen to say I need to start with scales, and I will, but God in me tells me to just play. Play like I sing in the Spirit not knowing what words or melody will come next. Just play.
Of course, CRaPS and POTS have also risen-up to get in the way. The pain and swelling have been terrible lately. I started Physical Therapy for the bulging disc in my back and OMGoodness!
I am tenacious enough to do it anyway. I will sit and learn. I will sit and play. And I will tell the pain to be cursed and take a hike.
Is there a dream you have put aside? I pray that you get to go for it!
Available on CastBox & this Blog. Soon, you’ll find me on iTunes, Stichter, Google Play, etc.
I’m so excited to say that you can now listen to my CRPS Inside Out Podcasts here. I’ll be uploading them either on their own or with corresponding Blog Posts.
Here are links to the Episodes I have so far:
E1 Errands & Expectations
Sometimes the things we take for granted are things we miss the most where CRPS is involved. In this episode, I talk about an embarrassing fall and how much I loved running errands. There’s always hope when dealing with challenging situations—it’s just a matter of finding it.
E2 Bad News & Creativity
Everyone gets bad news, but the good news is that everyone is creative. We are all capable of using creativity to pull ourselves out of bad moods from bad news. CRPS can either destroy us or make us the strongest people in the world. I choose strength.
E3 Raw Emotions & Handling it All
A lot is happening all at once and my emotions are pretty raw. The beauty is that my emotions don’t define who I am. They are merely a tool to use in life. They are a measurement. They are a bridge to action and reaction that is healthy and godly. And they are going to help me deal with my life tomorrow.
E4 A New Beginning
Dreaming again is what I’m looking forward to the most in this new season of my life. I want to get back to a place where living one day at a time still has hope for the future. I use creativity and my sanctified imagination to co-create with Jesus and you can too.
E5 Creativity & Pain
The Creative Spirit flows like an impregnated wind of love and passion. We have access to this Spirit from God. No matter what creative outlet, no matter what perspective you are coming from, you have access to the Creative Spirit. That is if you are human.
I never knew there was such a thing as being housebound until I got iller in the past several years. I’ve learned a lot about myself, my family and my friends. I’ve learned that I need community. I need to engage with others on very personal levels which keeps me safe and sane.
You are free to use Rocks N Mud music track (even for commercial purposes), but you must include the following in your video description (copy & paste):
I didn’t know “housebound” was a thing before being ill. And let me just say, it sucks.
I’m no longer able to drive let alone go anywhere alone.
Did I mention it sucks?
Okay, enough negativity!
I’ve had to find ways of getting out of the house to be alone and enjoy some of the things I love. I just need some “me time” outside of my home occasionally. I used to go for a drive in my car or on my motorcycle, I’d go ride my horse, hit some balls at the driving range, hike or go for a walk.
I must remember that I had the opportunity to do all those things when I think about how I’ve lost them—for now. I got to feel the wind in my hair. I got to enjoy nature. I got to experience the smell of jasmine, french fries, and honey buns as I rode my bike going mach-ten down the freeway coming home from work. I got to gallop, lose my hat and win while racing my husband up the mountain trails.
Today, I get to ride my electric wheelchair around the neighborhood, go to local stores and just breathe. I love it. I love to get out of the house, be outside and experience the changing seasons. I love to say good morning to people and run into other wheelers to chat about the day. I’m appreciating the people in my community more than ever before. The truth is that I need them.
I need the connections I am making online and around town. And if you told me I would feel this way five years ago I would have laughed.