CRPS combined with EDS-3, POTS, PNES, DID, and Dysautonomia, to name a few of my medical conditions, I’m struggling.
So, after having such a great time swimming, I hurt myself and couldn’t swim for months (Yes, I gained the full 14 lbs. back.). I pushed my muscles too far and ended up with new pain in my thighs. After months of trying to figure it out, and lots of different doctors, I found out it’s my nerves. I go to my new neurologist again tomorrow, so I’ll get more information. It’s embarrassing though because the last time I was there he diagnosed the Dysautonomia, and I had a seizure and fainted in his office on the way out. An ambulance ride later, I was told it was the POTS that made me fall.
Well, I’ve gotten pretty used to falling. I was just glad I didn’t break any bones this time. I did dent the front of my brand-new refrigerator recently.
So, I’m frustrated and there’s really no one to talk to about how I feel. I feel weaker overall and it’s kind of scary. I swear I’m just going to stop going to the doctors because it seems that every visit, I get diagnosed with something else.
Here’s where the fear is (Again, I see my neurologist tomorrow for more info.) I’ve read in several places that once a person is diagnosed with Dysautonomia they have five to 10 years to live. Well, I intend to beat that! I have way too many things I still need to accomplish in this life and I’m not leaving my kids without a mother.
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.