Wearing Crocs Podcast

Wearing Crocs, Episode 18

I never thought I’d wear Crocs. Before being diagnosed with CRPS I loved shoes, especially boots. I loved boots because I used to ride my horse and my motorcycle. I lived for riding, going fast, splitting the sky with hair blowing around my face. Now, I wear Crocs. I get a rare horseback ride walking slowly while wearing boots three sizes too big. No more motorcycle. No more wind blowing through my hair. Just Crocs.

Forgetting Meds Podcast

Forgetting Meds, Episode 17

Do you ever forget your meds? I do, and oh, my goodness, the pain. I don’t have a caregiver to remind me, and my alarms aren’t doing it for me when I’m not feeling well or didn’t get enough sleep the night before. What about you?

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)

CRPS & Shopping Don’t Mix

Making 2020 Ornaments

Shopping Can Suck

I shopped for a couple of hours with some friends yesterday and the pain afterward was nuts. I was quickly reminded that walking around a couple of large stores is not a good idea.

We took the normal Covid-19 precautions and started off looking for some clothes for a friend. About five-minutes in I was regretting my decision to go. But I did find a few last-minute gifts for my family.

CRPS makes shopping more of an online experience. I shopped online and actually handmade most of my gifts. I customized some books and journals for family and friends and made some Christmas tree ornaments. The ornaments are not only reflective of 2020, but are also shouting about CRaPS (Remember, the “a” stands for angry.).

Humor is a must for we CRPSers. We have to laugh everyday to keep our spirits high — laughter is the best medicine, after all. So, laugh at shopping, I will, because CRPS isn’t going to stop me. The breakthrough pain is always temporary, and I can handle that to bless my family with a few gifts to celebrate the birth of Jesus Christ.

Still recovering,

Jana

P.S.: Stay safe out there and find something to laugh about today.

Spreading CRPS?

New Injuries

It was a few months ago now that I broke some bones. I have a condition, Postural Orthostatic Tachycardia Syndrome (POTS), that makes me faint and fall sometimes. I fainted and twisted as I fell and broke both feet and my leg, again. Yes, I’ve done it before.

My left CRPS foot is now mirroring pain and other CRPS symptoms to the right foot. People talk about CRPS spreading and I’m kind of freaking out. I don’t want it to spread.

Obviously, it’s just my brain thinking my feet are injured. I just pray that there’s no spread and that my right foot is just still healing.

Worried,

Jana

P.S.: Have you had a spread?

The Suicide Disease Podcast

The Suicide Disease, Episode 16

CRPS pain is no joke and we must find positive ways to cope. Using distractions is a great way to do just that. In this episode Jana discusses various ways to fight the pain and find meaning in life. Without meaning CRPS can live up to its nickname “The Suicide Disease.” Let’s work together to change that.

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.