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.
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.
CRPS is relentless when it comes to hot temperatures. Summer is closing-in, and the heat is rising. When it’s hot outside my body knows it. I can be in the air conditioning, and it hardly matters. I thank God that I live in a moderately weathered area of Southern California. But when the temperature rises above 75°, I feel it intensely.
My friend took me to the pharmacy to pick-up medications yesterday and it was around 86°. I had symptoms of a heat stroke when I got home. I felt like I was being microwaved for about three hours. I had four icepacks on me in various places, had to take a cold shower, and vomited because of the nausea.
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 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.
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.
I like to do prophetic art during our worship time at church — sometimes dodging flags and dancers.
First I pray, asking Holy Spirit what He wants me to draw and I get into my Bible and read. I always begin to see part of an image, colors and shapes but I don’t get the whole picture until I begin to draw. The picture emerges so-to-speak and becomes something I may not even understand. Every quick drawing that I do speaks to someone, which is a blessing to me.
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.