I never thought I’d wear Crocs. Before being diagnosed with CRPS I loved shoes, especially boots. I loved boots because I used to ride my horse and my motorcycle. I lived for riding, going fast, splitting the sky with hair blowing around my face. Now, I wear Crocs. I get a rare horseback ride walking slowly while wearing boots three sizes too big. No more motorcycle. No more wind blowing through my hair. Just Crocs.
Finding Rest in Smiling
Today is just one of those days with CRPS that everything hurts, and I just need to rest. I’ve been laying down distracting myself by watching some funny videos — I do that when I need to laugh. With CRPS we have to laugh. We have to try to experience the good in our circumstances. CRPS hasn’t been dubbed the “suicide disease” for nothing. It can get very depressing when we are in tons of pain. It’s depressing because our future seems bleak if that’s what we choose to focus on.
But I am alive, and I can still smile. CRPS won’t get the best of me, not today. Thanks to every person who puts funny videos online. They get me through days like these.
I like to do prophetic art during our worship time at church — sometimes dodging flags and dancers.
First I pray, asking Holy Spirit what He wants me to draw and I get into my Bible and read. I always begin to see part of an image, colors and shapes but I don’t get the whole picture until I begin to draw. The picture emerges so-to-speak and becomes something I may not even understand. Every quick drawing that I do speaks to someone, which is a blessing to me.
The Pain is Exhausting
I have a friend who recently dealt with kidney stones and was in tremendous pain. She kept saying to me, “I don’t know how you deal with pain like this every day, and yours is worse.” My answer, “A lot of drugs and my DRG Implant.”
I felt bad for her but was also very grateful that she began to understand what we go through with CRPS. Plus, I was diagnosed with stage two kidney disease (from taking pain medications), so I know a bit about kidney pain. My friend had to take pain medication all day for nearly a month in order to function and spent a lot of time in bed. She was exhausted from the pain and couldn’t understand why. I knew. It takes so much energy for our bodies to cope with the pain that we get worn out.
It takes so much energy for me just to take a shower that I have a hard time functioning afterward. The warm water irritates my CRPS foot. It often feels like the water is stabbing me with every drop. Trying to do other things poorly affects me too, like cleaning the house. When I get inspired to clean, I get completely fried, suffer all night long, and have to take extra medication. I definitely can’t shower and clean in the same day.
My friend having kidney stones reminded me that we go through so much with CRPS. We are tired and that’s okay. We are limited and that’s okay too. We don’t have to feel guilty for not cleaning the house or showering every day. It’s okay. We can do what we can do. We can educate the people around us about how much CRPS affects us. And we can pray they never get kidney stones or have to go through what we are going through.
The CRPS price is high but we still have our minds—for the most part. We can still choose a good attitude, have some humor, and encourage others that pain won’t win. We are some of the strongest people on the planet. We can get through this with a smile and hope that our future can get better. Medical advancements are coming, like the DRG Implant. We will not just survive, but we will thrive and maybe even take more showers.
Do you ever forget your meds? I do, and oh, my goodness, the pain. I don’t have a caregiver to remind me, and my alarms aren’t doing it for me when I’m not feeling well or didn’t get enough sleep the night before. What about you?
I am burdened and broken by this pain. When your miracle rescue comes to me, it will lift me to the highest place.Psalm 69:29, The Passion Translation
We Are Not Victims
We can hold our heads high, because we fight this CRPS battle daily. We are among the strongest people on earth. Keep up the good work soldiers. Stay strong. Have hope that love for ourselves, for life, and for others will conquer our pain.
I’ll Share My Creativity
Something has been bothering me lately. How can I host and maintain four blogs with podcasts on three of them, and videocasts on one?
I’m an artist and author and have a lot happening in my life regarding my health. I have been diagnosed with five rare diseases or disorders, yep five. Not to mention what I call my lesser diseases, such as Type 2 Diabetes and Fibromyalgia which are a result of some of the other illnesses. The annoying five are:
- CRPS (Complex Regional Pain Syndrome)
- EDS-3 Ehlers-Danlos Syndrome Type 3)
- POTS (Postural Orthostatic Tachycardia Syndrome)
- DID (Dissociative Identity Disorder)
- PNES (Psychogenic Non-Epileptic Seizures)
I have separate blogs for CRPS and DID. I also have a site I rarely post at which is janarawling.com for my art making (though I forget to post stuff). Add to that, I am a Believer in Christ Jesus and have a blog site for that at HardwiredForLife.com (I have a partner on this one), and well, you see where I’m going with this. I get very tired and can’t post to all of them consistently, and I don’t. I suffer from symptoms every day mainly including pain, seizures, overall fatigue and falling down (sometimes breaking bones). I’ve had to stop working as a commercial art professor, which I miss very much. But I can still write when I feel okay, and I can make some art, which brings me joy through the pain.
I was wondering if I should combine some of the blogs, but I’m pretty sure that someone with CRPS doesn’t care about my DID, DIDers don’t care about POTS, and so on. I’ve been asking the Lord about it and He told me that the common denominator for all of my sites is not only me, but also is my art making, my creativity.
God told me that DIDers, CRPSers, Believers, and Artists all enjoy creativity. So, if you don’t mind, I will post the same art making and writing to all of my sites. That way, I have some universal content. I will still keep everything separate, but some creativity will be the same.
Whew! I feel better now. I feel that sharing my creativity is something I can do that will bring me tons of joy. Plus, I’m working hard on my healing and joy is a precious remedy.
Thank you for participating in my journey from wherever you’ve come.
P.S.: Can I pray for you? If so, contact me via email, or just say, “Yes” and I will be honored.
P.S.S.: I’m currently writing a book called, “Hardwired for Creativity: Art Supplies for the Mind” that should be finished sometime this year. I’ll let you know when that happens.