Category / PNES

by Jana Rawling

More Diagnostic Labels

Photo by Simon Matzinger on Unsplash

“My” Illnesses & Disorders

I have a problem. I have too many labels and want to bring them out into the open. Well, I’m saying them in order to conquer them, if that makes sense. I’m not doing this for pity’s sake. I’m processing the place I’m at in my life right now.

Many people think that labels cause more harm than good. I find them helpful to better understand what it is that I’m fighting to cure. Especially, with the “incurable” illnesses or disorders. I’ll be happy to let go of every label when symptoms cease to persist.

So, I was diagnosed with Complex Regional Pain Syndrome (CRPS), Postural Orthostatic Tachycardia Syndrome (POTS), Psychogenic Non-Epileptic Seizures (PNES) and Fibromyalgia all over the past six years. I can no longer work or do much of anything but sit at my computer for a bit, lie down, and occasionally get out of the house.

It’s a seriously stressful drag. To add fuel to the fire (CRPS joke), I find out soon if I have Type 2 Diabetes with complications, and a few days ago I found out I have Hypertension, Liver Disease and Stage 2 Kidney Disease.

And adding to those the recently confirmed Clinical Depression, Post Traumatic Stress Disorder (PTSD) and Dissociative Identity Disorder (DID) and I’m a mess.

That’s 11 labels of illnesses and disorders. Really!?

Labels are difficult for me. I don’t want to “own” any of these things. I also don’t want the stigma in my life. I don’t want to speak these curses into my life. I don’t want to give them any more power, yet I contend with symptoms daily.

This battle is logically resolved by believing what the Bible says about healing as a child of God.

Easier Said Than Done

As I have been traveling down this narrowing road, I seem to have lost some of my faith and belief. I believe that others can be healed whole-heartedly, but when it comes to myself, I’m struggling.

I must move the faith and belief it takes to be healed from my head and into my heart—into the here-and-now. What this really means is that I have an opportunity to go deeper with God. So, I’ll continue to pray, I’ll listen to some worship music, I’ll listen to some solid pastors, and I’ll spend time with God. And one day soon, I’ll be free.

If you are struggling with illnesses and disorders and can relate, let me know. There’s no way I’m alone in this.

All messed up,

Jana

P.S.: Transparency takes vulnerability and courage. So, I’ve just jump off a cliff here and we’ll see where I land.

by Jana Rawling

Identity Theft with Podcast

My Life…

Not Myself Anymore

CRPS has stolen my identity. I never imagined that CRPS, POTS, PNES, DID, et al. could change me so much—and not in a good way. I have become paralyzed in the pain. I hardly leave the house because I’m afraid I’ll have a seizure and/or fall down. I’m afraid of the pain that comes after walking the entire grocery store. I’m afraid to go walking around my neighborhood or going to the ranch to see my horse. I’ve become a shell of the person I used to be, and my children want their Mom back. I want me back.

I used to command the fear in my life. I pushed through and tenaciously succeeded at everything I tried. Today, the fear commands me and I have no drive. I am not myself.

So, what’s next? I’ve been told by two people I trust in the past week that I need to stop worrying about it all and just live.

Just live.

I’m going to pray:

Father God in Heaven, You are my Rock and my Light. You work with me through life and You carry me when I’m weak. I feel I’ve lost my self, Lord. It’s hard to believe that I’m in this place of fear and paralysis. Forgive me, Lord for allowing myself to get to this place of dying, not living.

Take my hand, Lord God and guide along this narrow, righteous path before me. Sing me songs of love that I may care and love myself through this crazy time. Papa, I want me back. Obviously, I will never be the same, but I know I will be stronger physically, emotionally and mentally. And I know from experience You will finish the job You started with me. I know I’m just in process of something wonderful. A birthing of a new me, a new creation, filled with Your Holy Spirit and love.

Thank You, Jesus for walking me through this process. Thank You, for teaching me to just live. Amen.

I know I can do this,

Jana

P.S: I feel like I’m at my rock bottom. It’s been years since I’ve ventured back here, and the only place to go is up. Whew!

Identity Theft, Episode 13

CRPS has stolen my identity. I never imagined that CRPS, POTS, PNES, DID, et al. could change me so much—and not in a good way.

by Jana Rawling

Emotional Podcast

Distraction, Episode 12
Feeling sad about not podcasting in a while… Plus, I’ve been a mess emotionally. The diagnosis of PNES has really thrown me for a loop because it’s psychologically driven. PNES is a physical manifestation of past trauma from childhood. So, I’ve been working to resolve stress in my life and get on-board with some therapy. Easier said than done.
by Jana Rawling

I’m Stuck

Photo by sydney Rae on Unsplash

How do I pick myself up again?

I’ve done it so many times. I’ve pushed through the barriers in my life one-after-another since I was very young. That’s why my body has broken down with CRPS, POTS and PNES. I’ve pushed through pain and suffering, but I feel like I’m stuck now. I feel like it’s time to push again. I don’t even know what that means to be honest. I’m just emotionally spent. Being ill is not fun.

I used to be able to pick myself up when I fall. Any time something bad happened to me, I looked it in the face and walked right through it. I had no choice. I’ve been raising my children. My older kids want to see me go back to work part-time. Part of me wants to scream out, “You don’t know what I go through every day.” The other part of me needs income.

So, I’ll pray. I’m just so afraid of the pain, of not being a dependable employee, of falling down on the job—literally. I’m not the person I used to be, but I’m not going to let these diseases steal my life either.

Sincerely from the floor,

Jana

P.S.: Any suggestions?

by Jana Rawling

Filling Time

20190816_183331
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.

by Jana Rawling

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.