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)

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?

Fighting Dystonia

CRPS, Edema & Dystonia this morning.

My Foot is Curling Under

Dystonia is “a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.” According to the Oxford Dictionary online.

Mild forms of Dystonia are things like writer’s cramp or musician cramps from repetitive motion. It can affect the limbs, neck, and face.

I have personally fought Dystonia for years now because of the CRPS in my left foot. My foot wants to curl under every time it hangs off of something, like a barstool or chair that’s too high for me. It happens in bed at night too and I wake sometimes with pain. The muscles in my foot contract and spasm and I have to place it flat on the floor or wrap it to stay straight.

I message my foot and use a heating pad, yes, heat on the already CRPS-hot foot, daily. The more I’ve walked in a day the worse the Dystonia gets. The more I’ve been stressed or tired the worse it gets. I also use a muscle relaxer as well.

We acquire Dystonia from an injury, being genetically predisposed or there’s no clear cause. There’s no cure for Dystonia, but sometimes it can be partially reversed. And, some data states that it will get to a certain point and stop getting worse over time.

Like with a muscle relaxer, Botox is another method for relaxing the muscles.* We can also get some targeted physical therapy.

Dystonia can also cause depression and a sense of dislike for the limb or affected body part. This can cause neglect for the body part as well. For me, it feels like my foot is not behaving. I literally get angry at it sometimes. There was a time close to my CRPS diagnosis that I hated my foot and wanted it gone.

These feelings and the physical pain are very hard to deal with emotionally and spiritually.

Living with Dysfunction

Here are some thoughts on living with Dystonia or any illness, disease or disorder:

  • Find a good support system.
  • Listen to your body.
    • Get sleep, rest, good nutrition, and exercise.
  • Get help with stress, depression and anxiety.
  • Stay social and don’t isolate.
  • Do things you enjoy.
  • Find more information online by searching for Dystonia.

Be blessed,

Jana

P.S.: I pray you are unbent and unbroken.

* Dystonia: Essential Facts for Patients from the International Parkinson and Movement Disorder Society.

Filling Time

20190816_183331
My distractions lately… Here are some recent sculptures drying. I’m still not sure how I will finish them after they are fired in the kiln. They will have crowns on their heads.

Finding Distractions

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,

Jana

P.S.: Fill your time doing something enjoyable. Do it for you.

Keep Climbing

boris-misevic-gL_v68kmeMQ-unsplash

Photo by boris misevic on Unsplash

Emotions of Chronic Pain & Illness

I can get very down when I’m in extra pain, or when I fall and get hurt. I get especially depressed when I’m going through it alone—in an empty house because everyone is off living their lives.

Listen, I’ve had CRPS in my left foot for 18 years, but it got significantly worse six years ago. I have processed negative emotions repeatedly. They don’t just go away. We don’t get over it, because it’s always there.

This is a problem, not only for us but for everyone we live with and love. I must point out here that CRPS has been dubbed the “suicide disease” for a reason. It’s hard to grieve the life I thought I was going to have, and to look at such a painful and lonely future.

I realized today that I’m disappointed in God. I’ve worked through being mad at Him more than once, but I never used the word “disappointed” before. I’m disappointed that my life is not full, rich or abundant. I’m not fruitful when I spend days in bed. And the only thing I want to do is serve God. I suppose the disappointment is that it’s hard to see my life becoming more than what it is today. It’s hard to see how I am going to be a good disciple from where I’m sitting. That hurts.

Don’t get me wrong. I do have hope. It’s just cloudy when there’s so much pain.

So, I must live one day at a time.

One day. What I can do today is pray. For all of us who live with pain and suffering. I pray we remember that God’s grace is sufficient and that when we are weak, He can be strong through us.

With all the grace I can muster,

Jana

P.S.: Let’s keep climbing. We’ll make it.

Landing on My Knees

ruben-hutabarat-ZA1Wvos1WYM-unsplash
Photo by Ruben Hutabarat on Unsplash

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,

Jana

P.S.: Think good thoughts.

Falling

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,

Jana

P.S.: And may you have low pain days.