CRPS & Weight Gain

Photo by NeONBRAND on Unsplash

Give Me a Break

Before I got CRPS in my feet I had no problem with weight gain. But immobility over the past six years has caused me to become morbidly obese with Type 2 Diabetes. Oh, and there are four other rare diseases I’ve been diagnosed with too. Five rare diseases. How is that even possible?

I am definitely eating my emotions.

I have developed Post Traumatic Stress Disorder (PTSD) because of the hopelessness CRPS creates. Getting a CRPS diagnosis is not a death sentence but, in many ways, it feels it might as well be. CRPS is known as the suicide disease for a reason. The CRPS prognosis is grim to say the least, and hope can become an ever-fleeting notion.

I want off the merry-go-round of not walking because of the pain, gaining weight from not walking, and not walking because of the pain, and so on. I know logically how to dismount the catch-22 spin but can’t seem to jump.

So, I write.

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.

If You Don’t Mind

My most recent drawing for a handmade book I want to make.

I’ll Share My Creativity

Something has been bothering me lately. How can I host and maintain four blogs with podcasts on three of them, and videocasts on one?

I’m an artist and author and have a lot happening in my life regarding my health. I have been diagnosed with five rare diseases or disorders, yep five. Not to mention what I call my lesser diseases, such as Type 2 Diabetes and Fibromyalgia which are a result of some of the other illnesses. The annoying five are:

  1. CRPS (Complex Regional Pain Syndrome)
  2. EDS-3 Ehlers-Danlos Syndrome Type 3)
  3. POTS (Postural Orthostatic Tachycardia Syndrome)
  4. DID (Dissociative Identity Disorder)
  5. PNES (Psychogenic Non-Epileptic Seizures)

I have separate blogs for CRPS and DID. I also have a site I rarely post at which is janarawling.com for my art making (though I forget to post stuff). Add to that, I am a Believer in Christ Jesus and have a blog site for that at HardwiredForLife.com (I have a partner on this one), and well, you see where I’m going with this. I get very tired and can’t post to all of them consistently, and I don’t. I suffer from symptoms every day mainly including pain, seizures, overall fatigue and falling down (sometimes breaking bones). I’ve had to stop working as a commercial art professor, which I miss very much. But I can still write when I feel okay, and I can make some art, which brings me joy through the pain.

I was wondering if I should combine some of the blogs, but I’m pretty sure that someone with CRPS doesn’t care about my DID, DIDers don’t care about POTS, and so on. I’ve been asking the Lord about it and He told me that the common denominator for all of my sites is not only me, but also is my art making, my creativity.

God told me that DIDers, CRPSers, Believers, and Artists all enjoy creativity. So, if you don’t mind, I will post the same art making and writing to all of my sites. That way, I have some universal content. I will still keep everything separate, but some creativity will be the same.

Whew! I feel better now. I feel that sharing my creativity is something I can do that will bring me tons of joy. Plus, I’m working hard on my healing and joy is a precious remedy.

Thank you for participating in my journey from wherever you’ve come.

With Love,

Jana

P.S.: Can I pray for you? If so, contact me via email, or just say, “Yes” and I will be honored.

P.S.S.: I’m currently writing a book called, “Hardwired for Creativity: Art Supplies for the Mind” that should be finished sometime this year. I’ll let you know when that happens.

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.

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.