Hot Temperatures & CRPS

Ouch!

CRPS Can Really Suck

CRPS is relentless when it comes to hot temperatures. Summer is closing-in, and the heat is rising. When it’s hot outside my body knows it. I can be in the air conditioning, and it hardly matters. I thank God that I live in a moderately weathered area of Southern California. But when the temperature rises above 75°, I feel it intensely.

My friend took me to the pharmacy to pick-up medications yesterday and it was around 86°. I had symptoms of a heat stroke when I got home. I felt like I was being microwaved for about three hours. I had four icepacks on me in various places, had to take a cold shower, and vomited because of the nausea.

CRPS sucks. CRPS with Fibromyalgia really sucks.

Disability Hearing

Photo by Haley Lawrence on Unsplash

Please, Let Me Vent

I’m not going to share with you all the details of my life regarding Disability benefits. Just know that I’m still in the process and it’s stressful. The big questions is, “Are they going to deny me again?”

I’m sure many of you have gone through this or are going through this experience. It’s extremely frustrating because I know people who are receiving Disability and they are not as sick as I am. I pray the judge understands CRPS and the plethora of other diseases and disorders I have been diagnosed with in the past few years. I hope he gets that I can’t function like I did in the past.

I’m a different person now — one without a career, without the ability to ride my horse, ride a bike, play golf, or walk for more than 5 minutes at a time. Shoot, I can’t even drive very far without almost falling down afterward because of the POTS. My head gets so foggy I can hardly do a decent blog post these days. I have to have my groceries delivered or have someone go for me. I need a ride to church because it’s sort of far away. I often have to go and lie down in the car waiting for the service to be over so a friend can take me home. I fall or almost fall every day. I have PNES episodes all day long. My live-in friend does the dishes and cleans the house. I try to help and end-up in too much pain to continue. Without her I don’t know what I’d do.

And I’m very unreliable these days. I have to cancel plans all the time because I don’t feel well enough to go. Well, you get the idea. I’m venting, thanks for listening.

So, as I wait for the hearing I’m praying. That’s all I can do.

A Death Sentence

Photo by Vincent Ledvina on Unsplash

Feeling Desperate & Alone

When I was first diagnosed with CRPS in 2013, after 12-years of pain without answers, I wished it was a death sentence. Why? Because it was more horrific knowing that I would live. I was told by my doctor that CRPS is an incurable, degenerative and rare chronic pain disease, and he was not wrong. The pain I was experiencing would never go away. It was unbearable to know that I would never again be pain free.

I became suicidal. I didn’t think I had the strength to live in that much pain the rest of my life.

But I was wrong.

I am strong enough. I’ve walked out this pain one day at a time. Through bad days and really bad days. Through okay days and wonderful days.

I keep pushing forward as medicine and technology gets better and better. More and more help is available and I’m grateful. Today I can manage this pain, this exhaustion, and this complex condition fairly well. I have to rest every day. I can’t stress. And I have to find joy and peace wherever they hide.

The thing is, I’ve found hope and I believe you can too.

With Deep Sincerity,

Jana

P.S.: Cherish your smiles.

With my whole heart, with my whole life, and with my innermost being, I bow in wonder and love before you, the holy God! Yahweh, you are my soul’s celebration. How could I ever forget the miracles of kindness you’ve done for me?

Psalm 103:1-2 (The Passion Translation)

Fighting Atrophy

If you don’t use it, you’ll lose it.

My left foot hurts unless I’m asleep. That’s just the way it is with CRPS. So, to tackle the pain I make sure I’ve taken my medications on time, eat well, the occasional heating pad (yes, it works) and I move my feet every day. I rotate them, stretch them through cramping and walk as much as possible. I know it sounds strange to exercise and walk when I’m in pain, but it helps tremendously. And I don’t want to incur any more irreversible damage than I have to.

You see, CRPS comes with its complications, two of which are Dystonia, muscle tightening, contracture and Atrophy, muscle and tissue wasting. You can read a bit about Dystonia in a recent post, Fighting Dystonia. These states often create irreversible damage.

I want to use my feet as long as I can. I do use an electric wheelchair if I have to walk long distances, like going to the mall. But I do my best to walk as much as I can. I try not to limp and walk as straight as possible to exercise the right muscle groups, but it takes concentration and effort. Walking exhausts me and I do rest afterward with my feet up to relieve the inevitable swelling.

You can see in my pictures where my left foot is smaller and has less muscle mass than the right. I was diagnosed in 2014, so they are showing six-years of muscle and tissue wasting. In the first three years I babied my foot, used my wheelchair more and wouldn’t walk far. Now I have a Dorsal Root Ganglion Spinal Cord Stimulator and I am much more mobile. I take advantage of the reduced pain by moving more and resting when I’m fatigued.

I do fight other illnesses, so life is not back to normal by any means but it’s definitely better. My treatments and methods my not be for you, but if I can get one thing across it’s to say don’t give up and keep moving your CRPS limbs.

Maintaining mobility and much love,

Jana

P.S.: Don’t let CRPS steal any more of your life than it can.

Chicken or Egg Podcast

Chicken or the Egg, Episode 15

Dealing with CRPS is hard enough without adding other illnesses and disorders. The complexity of CRPS becomes even more complex. It’s hard to separate the symptoms from one disease to another. And that causes anxiety and frustration.

Feeling Sicker Podcast

Feeling Sicker, Episode 14
I just received several new diagnosis and I’m having a tough time processing this new information about my health. I now, once again, must change my daily habits regarding food as medicine and exercise routine. Frankly, I think I just need to go for a “walk” which means making sure my wheelchair is charged.

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.

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.