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.

The Holidays Hurt

Photo by Pro Church Media on Unsplash

Painfilled Days

I’m really suffering this year and we haven’t even had Thanksgiving yet. I’m having family over for Thanksgiving and Christmas and CRPS has already taken a toll on me. We are cleaning and preparing, and my feet are just about killing me. CRPS makes being thankful difficult.

I always try to stay positive. There are even times (when I’m not in horrific pain) I can say that I’m thankful for having CRPS, because it has made me a better, stronger person. I know that without the CRPS my life would have been very different. I would have sailed through my career, doing things I wanted to do, and I would not have slowed down enough to hear from God on the subject. I would have been working my own plan out for my life, rather than God’s plan for my life. That’s a fact, I have no doubt.

So, it’s been better for me to have the CRPS from that perspective. I still suffer greatly though and really have to take to heart what the Bible says about suffering and pain in order to keep going. The Bible says that if we are to suffer, we do it for Christ sake.

For God has graciously given you the privilege not only to believe in Christ, but also to suffer for him.

— Philippians 1:29, The Passion Translation

…and if children, then heirs—heirs of God and joint heirs with Christ, if indeed we suffer with Him, that we may also be glorified together.

Being thankful for CRPS is hard, but it’s possible. I encourage you to see CRPS as a force that has made you a better person. Can you?

Just thinking,

Jana

P.S.: It’s taken me years to get to this point of gratitude for CRPS. Many years.

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.

It Could Be Worse

Photo by Justin Veenema on Unsplash

It’s a Hard Thing to Hear.

When we are first diagnosed, we can feel like we were given a non-death death sentence. CRPS is this thing that we’d almost wished we were diagnosed with something terminal instead. It has been dubbed “the suicide disease” for a reason. And it sucks!

To make it harder, the people around us are thinking and saying, “It could be worse.” And if you are anything like me, you wanted to smack them upside the head.

Well, after six-years I finally believe them.

Here’s what I did, and of course, just because I did it doesn’t mean you have to. It’s morbid, I admit. And I don’t recommend it for the faint of heart.

Here it is: I started watching TV, documentary films and online videos of death and disease.

At first, I thought something must be wrong with me to want to see this stuff, but it made me feel like “it could be worse.” I started to say it to myself throughout the day. “It could be worse” became my mantra and a reminder to live life for the living (In other words, it’s not about me.).

Much of the death and disease out there is hard to watch or hear. And many people will say that it’s worse to put negative imagery and words into our heads. Trust me, I agree that we need to stay positive but with CRPS there’s only so much positivity we can take when faced with such a horrible and torturous condition. Notice the but, it’s very likely that we can also feel that “it could be worse” when we focus on the positive only. So, don’t try this at home unless you feel you can handle it. Personally, I used to watch some cops-n-robbers stuff before I was diagnosed, so the leap to the macabre was not too far.

CRPS pain wears us down over time. It’s so incredibly hard to deal with let alone function effectively in our lives. It’s so hard that we can become depressed and suicidal. There’s SO much that we lose. I had to grieve the life I thought I was going to have, and it has been hard to reinsert myself into life as healthily as I possibly can. I’ve had to redefine myself and find meaning in life with CRPS. No easy task but I’m living proof that it’s possible.

Keep on keepin’ on,

Jana

P.S.: Let’s stick together in this. How do you cope and hope with CRPS in your life?

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.