Rejection & CRPS

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I Believe You

CRPS is a rare disease with less than 200,000 US cases per year. CRPS is incurable, degenerative, and can last a lifetime. And if we suffer from CRPS we know that many people just don’t believe us—even doctors and other medical professionals. Diagnosing CRPS takes time, a lot of frustration and pain, and knowledgeable doctors. Unfortunately, CRPS almost has to get worse before we are believed.

I have lost many friends in the process of diagnosis and learning to live with this disease. People just don’t know what to say or do for us. Around the time of diagnosis, we are literally a hot mess. People think we are exaggerating our pain, like a whiner or complainer. Friends, family, and doctor’s alike think we are just seeking pain medications. After all of this rejection coming at us from all sides, we begin to feel that they are right, and we are wrong.

It’s easy to feel defeated when so many people reject us. I was fortunate to have found a General Practitioner who said to me, “You have CRPS? That’s brutal. I’m so sorry.” It was the first time I felt validated. I’ve also had an experience in the Emergency Room with six doctors and nurses standing around my bed talking to each other about what was wrong with me. I was vomiting from the pain and between breaths I yelled, “I have CRPS. Just f-ing Google it!” Within minutes I was given a healthy dose of pain medication.

Let me just say that I believe you. Your pain is real. If I can suggest anything it’s to become as informed as you can about CRPS in order to explain it to the people around you, including doctors and nurses. Be your own advocate. CRPS does not have to be dubbed the “suicide disease.” There are great treatments available, and more studies are being done to get a handle on this condition.

There is hope. I promise you.

Disability Hearing

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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.

I’ve Got to Laugh

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Finding Rest in Smiling

Today is just one of those days with CRPS that everything hurts, and I just need to rest. I’ve been laying down distracting myself by watching some funny videos — I do that when I need to laugh. With CRPS we have to laugh. We have to try to experience the good in our circumstances. CRPS hasn’t been dubbed the “suicide disease” for nothing. It can get very depressing when we are in tons of pain. It’s depressing because our future seems bleak if that’s what we choose to focus on.

But I am alive, and I can still smile. CRPS won’t get the best of me, not today. Thanks to every person who puts funny videos online. They get me through days like these.

: )

Taking a Shower Sucks

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The Pain is Exhausting

I have a friend who recently dealt with kidney stones and was in tremendous pain. She kept saying to me, “I don’t know how you deal with pain like this every day, and yours is worse.” My answer, “A lot of drugs and my DRG Implant.”

I felt bad for her but was also very grateful that she began to understand what we go through with CRPS. Plus, I was diagnosed with stage two kidney disease (from taking pain medications), so I know a bit about kidney pain. My friend had to take pain medication all day for nearly a month in order to function and spent a lot of time in bed. She was exhausted from the pain and couldn’t understand why. I knew. It takes so much energy for our bodies to cope with the pain that we get worn out.

It takes so much energy for me just to take a shower that I have a hard time functioning afterward. The warm water irritates my CRPS foot. It often feels like the water is stabbing me with every drop. Trying to do other things poorly affects me too, like cleaning the house. When I get inspired to clean, I get completely fried, suffer all night long, and have to take extra medication. I definitely can’t shower and clean in the same day.

My friend having kidney stones reminded me that we go through so much with CRPS. We are tired and that’s okay. We are limited and that’s okay too. We don’t have to feel guilty for not cleaning the house or showering every day. It’s okay. We can do what we can do. We can educate the people around us about how much CRPS affects us. And we can pray they never get kidney stones or have to go through what we are going through.

The CRPS price is high but we still have our minds—for the most part. We can still choose a good attitude, have some humor, and encourage others that pain won’t win. We are some of the strongest people on the planet. We can get through this with a smile and hope that our future can get better. Medical advancements are coming, like the DRG Implant. We will not just survive, but we will thrive and maybe even take more showers.

There’s Always Hope

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I am burdened and broken by this pain. When your miracle rescue comes to me, it will lift me to the highest place.

Psalm 69:29, The Passion Translation

We Are Warriors

We Are Not Victims

We can hold our heads high, because we fight this CRPS battle daily. We are among the strongest people on earth. Keep up the good work soldiers. Stay strong. Have hope that love for ourselves, for life, and for others will conquer our pain.

It’s Not Your Fault

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Let Go of the Blame

I’ll come straight out and say it: You did nothing to get CRPS. I have found that people want to place blame on us, or we want to blame ourselves for getting CRPS. My CRPS started with a trip down a 3-inch stair that I didn’t see. I twisted my ankle and five-years after needed surgery to repair torn ligaments because it would roll under and I would fall. The pain never ended and only got worse over time. Bottom line, I got CRPS from a sprained ankle.

I blamed myself for getting CRPS for a long time. Why? Because I am a Christian. Now, hear what I’m saying. I will explain. I fell at a Halloween party, which I shouldn’t have gone to in the first place. I don’t celebrate Halloween. I was invited by some of my employees and as their manager I shouldn’t have gone with them. Two strikes: A Halloween party and hanging out with subordinates off hours. Add to that: I was dressed as an angel. Strike three?

We entered the party through a dark maze and at the end of the maze was that small step. We poured out of the maze laughing and I tripped. When I went down, I heard a crack and thought I broke my ankle. Before I got up, I said, “Can someone take me to the nearest ER?” Long story short, they called me a fallen angel for the next month as I hobbled around on crutches. (God has a sense of humor.)

Back to being a Christian. There can be harsh judgment along with religiousness in the mainstream Christian church. Twenty-five years ago, I was one of those judgmental, mainstream Christians. So, I judged myself after I fell. I had put myself in a position of allowing the enemy of God to attack me and he did. I made poor decisions and the consequences led ultimately to this horrific disease.

For years, I carried that blame and shame, not to mention the guilt.

You may not like this next part. Today I see the experience as one that I had to go through in order to become the person I am today. Today I know that CRPS is part of my life story. At that time in my life, I was going through a nasty divorce and I was going to make bad decisions. You may think I’m rationalizing the scenario to fit my beliefs. Maybe I am. But it doesn’t matter. Again, I would not be who I am today without getting CRPS.

So, was it my fault? Did I position myself to fall? Probably. Again, it doesn’t matter to me anymore. I’ve forgiven myself and I’ve let it go. I’ve found compassion for myself. I’ve found love for myself. And compassion and love are the most amazing pain killers.

With love & compassion,

Jana

P.S.: Let it go. Forgive yourself and others involved. Find compassion and love no matter how hard it may be. There is hope, I promise you.

You saw who you created me to be before I became me! Before I’d ever seen the light of day, the number of days you planned for me were already recorded in your book.

Psalm 139:16, The Passion Translation

A Death Sentence

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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)