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.
Let Go of the Blame
I’ll come straight out and say it: You did nothing to get CRPS. I have found that people want to place blame on us, or we want to blame ourselves for getting CRPS. My CRPS started with a trip down a 3-inch stair that I didn’t see. I twisted my ankle and five-years after needed surgery to repair torn ligaments because it would roll under and I would fall. The pain never ended and only got worse over time. Bottom line, I got CRPS from a sprained ankle.
I blamed myself for getting CRPS for a long time. Why? Because I am a Christian. Now, hear what I’m saying. I will explain. I fell at a Halloween party, which I shouldn’t have gone to in the first place. I don’t celebrate Halloween. I was invited by some of my employees and as their manager I shouldn’t have gone with them. Two strikes: A Halloween party and hanging out with subordinates off hours. Add to that: I was dressed as an angel. Strike three?
We entered the party through a dark maze and at the end of the maze was that small step. We poured out of the maze laughing and I tripped. When I went down, I heard a crack and thought I broke my ankle. Before I got up, I said, “Can someone take me to the nearest ER?” Long story short, they called me a fallen angel for the next month as I hobbled around on crutches. (God has a sense of humor.)
Back to being a Christian. There can be harsh judgment along with religiousness in the mainstream Christian church. Twenty-five years ago, I was one of those judgmental, mainstream Christians. So, I judged myself after I fell. I had put myself in a position of allowing the enemy of God to attack me and he did. I made poor decisions and the consequences led ultimately to this horrific disease.
For years, I carried that blame and shame, not to mention the guilt.
You may not like this next part. Today I see the experience as one that I had to go through in order to become the person I am today. Today I know that CRPS is part of my life story. At that time in my life, I was going through a nasty divorce and I was going to make bad decisions. You may think I’m rationalizing the scenario to fit my beliefs. Maybe I am. But it doesn’t matter. Again, I would not be who I am today without getting CRPS.
So, was it my fault? Did I position myself to fall? Probably. Again, it doesn’t matter to me anymore. I’ve forgiven myself and I’ve let it go. I’ve found compassion for myself. I’ve found love for myself. And compassion and love are the most amazing pain killers.
With love & compassion,
P.S.: Let it go. Forgive yourself and others involved. Find compassion and love no matter how hard it may be. There is hope, I promise you.
You saw who you created me to be before I became me! Before I’d ever seen the light of day, the number of days you planned for me were already recorded in your book.Psalm 139:16, The Passion Translation
Feeling Desperate & Alone
When I was first diagnosed with CRPS in 2013, after 12-years of pain without answers, I wished it was a death sentence. Why? Because it was more horrific knowing that I would live. I was told by my doctor that CRPS is an incurable, degenerative and rare chronic pain disease, and he was not wrong. The pain I was experiencing would never go away. It was unbearable to know that I would never again be pain free.
I became suicidal. I didn’t think I had the strength to live in that much pain the rest of my life.
But I was wrong.
I am strong enough. I’ve walked out this pain one day at a time. Through bad days and really bad days. Through okay days and wonderful days.
I keep pushing forward as medicine and technology gets better and better. More and more help is available and I’m grateful. Today I can manage this pain, this exhaustion, and this complex condition fairly well. I have to rest every day. I can’t stress. And I have to find joy and peace wherever they hide.
The thing is, I’ve found hope and I believe you can too.
With Deep Sincerity,
P.S.: Cherish your smiles.
“With my whole heart, with my whole life, and with my innermost being, I bow in wonder and love before you, the holy God! Yahweh, you are my soul’s celebration. How could I ever forget the miracles of kindness you’ve done for me?“
Shopping Can Suck
I shopped for a couple of hours with some friends yesterday and the pain afterward was nuts. I was quickly reminded that walking around a couple of large stores is not a good idea.
We took the normal Covid-19 precautions and started off looking for some clothes for a friend. About five-minutes in I was regretting my decision to go. But I did find a few last-minute gifts for my family.
CRPS makes shopping more of an online experience. I shopped online and actually handmade most of my gifts. I customized some books and journals for family and friends and made some Christmas tree ornaments. The ornaments are not only reflective of 2020, but are also shouting about CRaPS (Remember, the “a” stands for angry.).
Humor is a must for we CRPSers. We have to laugh everyday to keep our spirits high — laughter is the best medicine, after all. So, laugh at shopping, I will, because CRPS isn’t going to stop me. The breakthrough pain is always temporary, and I can handle that to bless my family with a few gifts to celebrate the birth of Jesus Christ.
P.S.: Stay safe out there and find something to laugh about today.