Category / POTS
More Diagnostic Labels
“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.
Identity Theft with Podcast
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.
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,
P.S.: Any suggestions?
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,
P.S.: Fill your time doing something enjoyable. Do it for you.
Landing on My Knees
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.
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