“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,
P.S.: Transparency takes vulnerability and courage. So, I’ve just jump off a cliff here and we’ll see where I land.
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.
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,
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!
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.
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,
P.S.: Let’s keep climbing. We’ll make it.
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,
P.S.: Think good thoughts.
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,
P.S.: And may you have low pain days.
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….
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.