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.

 

Wonderful Weather

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….

Colossians 3:5–11

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.

Staying sunny,

Jana

Undignified

MeetingMap

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.

Hopeless to Hopeful with Podcast

 

Things Do Get Better

It was a rough day and I was starting to feel hopeless about my future with CRPS, POTS, and Fibromyalgia. But my friend dragged me to a worship service, and everything changed. I could barely stay and was in a lot of pain when I got honest about my feelings and spent a short amount of time praising God for all He has given me, and my attitude changed.

Lots of Love—One Day at a Time,

Jana

P.S.: Check out a full list of my Podcasts on Castbox.com

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Episode 9

 

Body Failure with Podcast

ChairIntheYard

Have you ever felt this way?

I wrote this a few months ago and it still has a ring of truth that I can’t deny….


My body is failing. All my suffering is my body’s fault.

Can I say that it’s not my body’s fault?

I have blamed you. You have failed me, and you keep failing me.

The body reflects what’s in our mind, right? How can that be so? If I was born without a leg, would I blame my mind or body?

Do I blame God?

I do. Deep down I’m sure I do. How do I get over this and live with joy? How do I find peace?

With faith, my dear, with faith.


CRPSPain_PodcastIcon

Episode 8

 

 

Take it one day at a time,

Jana

P.S.: I want my miracle… any day now would work for me. Invisible Disabilities and Illnesses are real and they are crazy-hard to live with.

I Got a Violin

It was an Unction

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!

The pain….

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!

One day at a time,

Jana

P.S.: Shoot me an email at CRPSInsideOut@gmail.com, I’d love to hear from you.