It’s Not Your Fault

Photo by Brandi Ibrao on Unsplash

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,

Jana

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

Filling Time

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My distractions lately… Here are some recent sculptures drying. I’m still not sure how I will finish them after they are fired in the kiln. They will have crowns on their heads.

Finding Distractions

Distraction is a key component of my life with pain. It helps me with pain management, and it helps psychologically to keep me from focusing on the dis-ease of CRPS, POTS and PNES symptoms. I’m alone a lot of the time as well, so distraction becomes a pretty good friend.

One of the things I do is make art, and I love to sculpt the human figure. I just finished a couple of pieces that I plan to design and sculpt tiaras and crowns for. I plan to finish about five of them for an Expo early next year.

My conceptual framework for the pieces is that we are all precious treasures. We are a royal priesthood of princes, princesses, kings, and queens as children of God (Check out Revelations for more about our eternal future as Christians born again.)

Regardless of the religious aspect of the work, I want to show people that we are important as humans on earth. We each have a kingdom, or our sphere of influence, that we rule and reign for. We lead others, whether we are aware of it or not. People watch people and learn from them.

It’s time we “own” our position as royalty with love and care for others. It’s time to teach people how we want to be treated. And to live a more effectual life that fulfills our calling and purpose.

Okay, you got me preaching… I’ll stop and just say that it’s great to find a passion for something that also distracts me from the pain.

Have a low pain day,

Jana

P.S.: Fill your time doing something enjoyable. Do it for you.

Keep Climbing

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Photo by boris misevic on Unsplash

Emotions of Chronic Pain & Illness

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.

With all the grace I can muster,

Jana

P.S.: Let’s keep climbing. We’ll make it.

Landing on My Knees

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Photo by Ruben Hutabarat on Unsplash

I fell again today and as I was getting up, I ended up on my knees. I figured that since I was there, I could pray. First, I asked for forgiveness for not getting on my knees in the first place.

Later, friends came over and I was blessed to give one my starter violin. Within an hour, through chatting with my new aunt (New, because she found me last year looking for her adopted brother, who as it turns out is my long-lost father.) she is giving me her violin that she no longer uses.

How’s that for reaping what we sow?

Now, I am encouraged to sow healing. Meaning, I can take better care of myself, love myself more, engage in what’s good for me, and be grateful along the way.

In all humility,

Jana

P.S.: Think good thoughts.

Falling

Music Lifts Me Up

I fall down a lot. A few times a week. I get light-headed and my muscles disappear from under me. I hit my head hard last week and ended up in the ER again. A few days later, I lost sight in both eyes for a couple of minutes (usually it’s just one eye). I was alone so I just laid there awhile. It was scary.

I don’t want to be sick anymore. I’m tired of falling and feeling wobbly. It sucks to lose sight in my eyes even though it’s temporary. Today I fell and I couldn’t get up, again. My muscles wouldn’t recover quickly enough, so I got to see how badly my hallway baseboards need to be cleaned.

CRPS is no joke, especially in the Summer. Add POTS to it and, well it sucks even more. Tests show my heart is fine, which is good news. I have a Tilt-Table test soon and an inpatient EEG to look further into the falling. In the meantime, I wait.

I wait. I write. I practice my violin and I pray.

May health be with you,

Jana

P.S.: And may you have low pain days.

 

Undignified

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Healing Service in San Ysidro, California

I rarely fall under the power of Holy Spirit… It can be undignified. But last night I not only went down, but I also encountered Jesus (started crying) and didn’t remember much of what happened. Apparently, I was being videotaped, got tapped in the head and stomach with the microphone, and I kind of remembered being cheered on for miraculous healing.

I’ll take it… undignified and all. I wanted to be healed so badly. So, am I healed? I believe so. I feel different, lighter and more joyous. So much so that when I got my SSDI determination today and was denied, I was okay. My head is spinning a bit but not horribly. I should be sad, angry or something, but I feel relieved. It’s over for now. My next step is to think and pray about my next step and I’m confident I can do that and get some wisdom and strategy.

By the way, my feet feel amazing. I feel like I can walk, so I’ll try. I feel like my head is clear, so I’ll write. I feel like a new person, so I’ll dream again. And I’ll praise God.

The 5-hour roundtrip drive to see Mark Hemans was worth it.

Still wiping the snot from my nose,

Jana

P.S.: The meeting was at the border of Mexico and these lyrics ran through my head on the drive home (Holy Spirit’s got jokes.):

“It is the night

My body’s weak

I’m on the run

No time to sleep

I’ve got to ride

Ride like the wind

To be free again

 

And I’ve got such a long way to go (such a long way to go)

To make it to the border of Mexico

So I’ll ride like the wind

Ride like the wind…”

 

By Christopher Cross

Weathered & Rough

Weathered Plywood

I shot this at my house and it really connected.

It’s How I Feel

I’m really having a tough time looking at Psychogenic Non-Epileptic Seizures (PNES) as another possible diagnosis. I feel raw and I’m not sure about how I will start to heal and move forward. I do know that this Blog and Podcast project has helped tremendously.

I know that I’m not alone, even though I haven’t come across anyone yet with PNES. I’m just starting research regarding causes, symptoms, treatments, prognosis, etc. And, I can only do so much research before I get pretty darn sad. It’s the same way for me with CRPS. It can get depressing to read about.

I want to be optimistic, but I’m thinking that’s been part of my problem. I have been accused of being too positive before—I guess that’s a thing.

Being too optimistic means I have stuffed down the problem. The problem? Trauma. Multiple traumas, including repeating molestation and incest as a child, causing dissociation and dysthymia. Yep, I’m a highly functioning person living with comorbidity. Now, everyone knows, and I am glad. I’m tired of hiding it. (I hope that doesn’t keep you away from me… I suppose that’s the real fear; being alone.)

I’m also certain that the repeated traumas in my life have something to do with my being highly sensitive and intuitive. I used to get hurt very easily socially and psychologically. I probably still do but know how to shut it down quickly all under the guise of emotional intelligence.

I can’t tell you how many times as a child I heard, “Stop crying or I’ll give you something to cry about.”

The reason I bring up being highly sensitive is that other people have experienced similar emotional pain and trauma, and they’ve survived. I feel very deeply, which has made me susceptible to additional pain. Go figure that CRPS is the most extreme kind of pain one can experience.

Perhaps, I’m punishing myself undeservedly. I can see that. I feel illogical that it was somehow my fault. I don’t remember ever being told that, but it’s possible. I’ll have to ask God to show me what happened in more detail so that I can process the information and begin to heal.

Sincerely weathered,

Jana

P.S.: Stay strong.

No More Swelling

 

It’s my writing. And maybe my heart.

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,

Jana

P.S.: I want to see your art, hear your songs and let you know you are loved. Email me at CRPSInsideOut@gmail.com.