Spreading CRPS?

New Injuries

It was a few months ago now that I broke some bones. I have a condition, Postural Orthostatic Tachycardia Syndrome (POTS), that makes me faint and fall sometimes. I fainted and twisted as I fell and broke both feet and my leg, again. Yes, I’ve done it before.

My left CRPS foot is now mirroring pain and other CRPS symptoms to the right foot. People talk about CRPS spreading and I’m kind of freaking out. I don’t want it to spread.

Obviously, it’s just my brain thinking my feet are injured. I just pray that there’s no spread and that my right foot is just still healing.

Worried,

Jana

P.S.: Have you had a spread?

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.

 

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.

Extremely Raw with Podcast

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Hope, 2015 by Yours Truly

Hiding in Plain Sight

I said I was going to be raw for this Blog. So, here it is….

I saw my neurologist yesterday and his news was honest and disconcerting. I must have more tests to see if my seizure episodes are epileptic or not. The “or not” is that I may have yet another condition called Psychogenic Non-Epileptic Seizures (PNES).

And there it is. I thought this might be the case. What does it mean? It means my seizures are real, but they originate from a combination of psychological conditions. Some known causes include anxiety, dissociation disorders, post-traumatic stress, etc.—basically, forms of severe and chronic mental stress.

Ironically, I’m can wrap my head around this one.

You see, I’ve had a secret and here it is… I have been blaming my current illnesses on my body, or at times on God when the reality is that I know I haven’t dealt with a lot of trauma in my life. I have pretended that everything is okay and that I’m past all the emotional pain. I have pushed on in a highly functional way at the cost of my physical health. I have known that psychological brokenness internalized continues to manifest as dis-ease in my body.

There it is. My secret.

I seem to have it all together, but I don’t—seriously.

CRPS may even be another symptom of internalizing trauma. I don’t know. The only thing I know is that today begins a sober journey of psychological healing I wanted to avoid.

Incognito no more,

Jana

P.S.: I think I’ll start with one hour at a time, rather than one day.


Extremely Raw, Episode 10