I’m Tired of Faking It

I’m tired of pretending that I’m okay. I fake it in front of family and friends. I don’t want people to get upset and that’s totally on me. I guess I’m a people-pleaser after all. I mean, what can happen if they know? I just think that it might be worse if I keep hiding it from them. Then there’s the fact that I am having a hard time facing new diagnoses and symptoms. There’s no one to talk to about this either. I suppose a counselor may be in order.

Having CRPS is one thing, but I’ve been diagnosed with several rare diseases and now have a plethora of other “minor” diseases like fibromyalgia, diabetes, and kidney disease. I was just diagnosed with Dysautonomia and Lymphedema, so that sucks. My life expectancy just took a nose dive and no one understands.

It’s also getting dangerous to go places on my own. Dangerous because I can get hurt if I fall, which I do often and I certainly can’t depend on the kindness of strangers to help me. I’ve broken bones in both feet at the same time, twice, yes, twice. The last time I broke my CRPS leg too.

How do I make this transition from playing fine to letting people really know what’s going on?

Q&A with Jana

Photo by chris liu on Unsplash

Chatting About CRPS

Sharon:

Hi, I’m interviewing Jana Rawling for her CRPS Inside Out blog. She asked me to help her to give her readers some insight into what it’s like to live with CRPS.

Jana:

Yes, thank you for interviewing me.

Sharon:

I have known Jana for a while now so, I’ve seen how hard she can struggle at times.

Jana:

Yes, Sharon and I have a ministry together called Hardwired for Life. And if you’re interested in that, you can find it at hardwiredforlife.com. And so yeah, we just wanted to sit here and talk about what it’s like to live with the effects of CRPS.

Sharon:

So, how did you get CRPS?

Jana:

Well, it was in 2001. I got CRPS from surgery on my left foot.

I originally sprained my ankle about five years before that surgery and it was awful. I heard my foot crack when I fell. So, I thought that I broke my ankle or something, but what I did was tear my peroneal tendon going down the outside of my foot that goes underneath the ankle. In 2001 I had to have surgery because my foot kept rolling under and I kept falling and tripping.

I ended up having that surgery and oh my gosh from literally the second I woke up in the recovery room I was in excruciating pain. I sat straight up, and I started vomiting. And it was just like the most intense pain and the nurses and doctors couldn’t understand what was going on. They didn’t think I should be having such a strong reaction to the surgery, so it was very confusing to me.

Also, when I woke up from the surgery in a hard cast. And that’s probably what caused the CRPS.

My foot had nowhere to swell from the surgery and it was constricted. When I went home, I was still throwing up and in pain. I literally cut my cast off it hurt so bad.

Sharon:

And you had some further surgeries too, right?

Jana:

Yeah, I did, because of the pain, scar tissue, and limping. The pain was still intense over the years. And what happened was I ended up losing my mobility. The first thing I lost was my ability to ride my mountain bike. And that really sucked. Then I lost the ability to go on a hike for very long or to walk for more than 30 minutes in a day. So, over the years I lost my bike riding, my hiking, my walking, and riding my horse. All these things ended up hurting so badly that I couldn’t do them anymore.

And so, I ended up in braces for years, just dealing with a bad foot, which really sucked, and then subsequently I knew I was going to have to have more surgery. I went in to see the orthopedic surgeon who did my surgery, and she said, “I think you may have this rare, degenerative, incurable disease called RSD.” It’s reflexive sympathetic dystrophy, but now the RSD name has changed to Complex Regional Pain Syndrome, so CRPS. But she didn’t address the CRPS, she just did the surgery on my foot, which was a calcaneal-cuboid fusion.

The joint between two of the bones in my foot got ground down to nothing from limping for so long. But in that surgery, they put a cadaver bone in my foot, and I rejected it, so there was no fusion. The surgery didn’t work.

The doctor was like, “I’ve been doing this for 31 years and this is the first time I’ve had a non-fusion.” She just couldn’t believe it. So, then I had to have another surgery where they took a bone graft from my Iliac Crest and put it in my foot.

So, after those two surgeries, I was in even more intense pain. It took the pain up like 50 levels. It was this insane pain, and I wasn’t healing quickly. I was in and out of hard casts for a year and a half. I was on a knee scooter and in wheelchairs and all that stuff. And it really sucked. It was hard for me to do.

Sharon:

Yeah, and that surgeon — I know her because I used to work with her indirectly, and she is the most amazing surgeon ever. She just retired. I worked in the medical field, and she was something else, so I knew Jana had a good doctor.

Jana:

Yeah, so now my fusion is perfect. Structurally, I don’t limp anymore. I limped for almost 20 years. It’s just the CRPS that got horrible.

Sharon:

So how do you think CRPS has affected your life?

Jana:

Oh my gosh. Well, that’s a loaded question because I’ve lost so much. I lost my career because I couldn’t work effectively anymore as a professor and program director at the Art Institutes. I was on track to going to Dean School and that couldn’t happen. And so, I had to eventually go down to full-time faculty and then I had to go down to part-time faculty until I ended up needing to quit altogether.

My identity was really wrapped up in my career, which I didn’t really realize until all this happened.

So, I can’t ride my horse anymore. I had to sell my motorcycle, which I commuted on to work for 10 years. I’ve lost the ability to go places without an electric wheelchair or scooter or something if I’m going to need to “walk” far at all. CRPS has in so many ways, just destroyed who I was. And I’ve had to rebuild who I am because of that.

And in doing that, I think my greatest accomplishments are two things that I’m proud of. One is that I’ve been able to find joy in the suffering. So, I’m excited that I can do that. I can still laugh. And I can still have fun. I just mentally have to push the pain aside.

It’s really wearing on someone to have chronic pain. I don’t care what the chronic pain is, if you have it for more than 10 years, they say it affects you mentally and emotionally. So, you know, depression is real. CRPS has been dubbed the suicide disease.

Sharon:

Oh yeah, the struggle is real.

Jana:

It is real because the pain is 24/7/365. It’s not going to stop or go away. It’s just going to get worse and spread, you know, over time. And so, the prognosis is very disheartening.

Sharon:

And so how many years have you had it all together?

Jana:

21 years.

Sharon:

OK, that’s a long time.

Jana:

Yeah, it is.

Sharon:

That’s really hard. So, what about healing breakthroughs? How do you feel like maybe you’ve accomplished some?

Jana:

Oh, you know what I forgot to mention, the second thing that CRPS did in my life. The thing that I’m proud of is that I’ve written 14 books now. Yeah, see, because I had to figure out what I was going to do that I could do laying down in bed or sitting. You know, not moving very much. And so, I started writing.

I just published my 14th book a couple weeks ago about creativity. I’m really excited about the books, and you can find them on Amazon. Just search my name. But also, you can go to hardwiredforlife.com and there’s a Shop Books page that has all the links to all our books.

I’ve coauthored three of those books with Sharon, actually. So that’s been a good accomplishment. I feel like God had to allow the CRPS to slow me down so that I could get these books written. I was just spinning and going in a direction that was not the purpose of my life. My purpose was not to be a dean.

So, now I feel like I have a whole new beginning. I’ve only been officially diagnosed with CRPS since 2014. So that’s not very long. Ever since I’ve been diagnosed, I’ve had to redesign myself, you might say.

Like, I had to get used to not working and being disabled and everything that comes with that. Plus, I gained 80 lbs., because of the immobility. And that spiraled into diabetes and other health problems. So, I’m dealing with a plethora of other stuff (I was going to say crap.). By the way, I have named CRPS, CRaPS. The “a” stands for angry. So, it’s Complex Regional Angry Pain Syndrome.

Sharon:

There you go, that’s funny.

Jana:

Back to your question about healing… Oh man, I’ve experienced healing for sure, especially mentally and emotionally. I know more about what to expect. I know that if I walk too much it will hurt, and I’ll have to take pain meds. I know that I can’t go too many places alone. I think I’ve just learned more about my limits.

I fall often unfortunately because I also have four other rare conditions. So, I’m dealing with getting dizzy, fainting, things like that. And so, any time I fall without breaking a bone it’s good. I’ve broken both feet at the same time twice, and the last time I broke my leg too, so it was just a nightmare. And then I broke a bone in my hand. So, every time I fall, I’m like, Okay, did I break anything? If not, I’m happy.

And then every day I can get out of bed and do something, I feel like it’s a miracle day. Doing something means writing mostly. It’s not like I go out and do a whole lot. I’m still pretty much housebound.

It’s summer. And, oh my gosh. Yeah, we’re in triple digits here and it’s been hard with the heat. It’s not good for my joints. Every joint hurts and feels swollen. My muscles are on fire because of the CRPS. It started in my foot, but it has spread. Well, one of my doctors said, “The CRPS hasn’t spread, but now you have fibromyalgia in your whole body.”

So, the heat is just really crazy with these conditions. So, I have a heart for anyone with fibromyalgia. When you’ve got it to this degree, it’s not fun at all.

Sharon:

So how do you think living with CRPS will impact the rest of your life?

Jana:

Oh, this is the question. When I saw this question earlier, I was like, how am I supposed to answer that?

The future is so unknown with CRPS as far as the fact that it affects your central and peripheral nervous systems, which means basically it affects almost your whole body. All my organs have been affected by this in some way.

So, I was just diagnosed with Dysautonomia a few weeks ago, which is autonomic nervous system dysfunction. And then I have Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome, and Psychogenic Non-Epileptic Seizures. Many of these conditions fit under the umbrella of Dysautonomia.

It’s really hard, especially because of the prognosis. In doing my research, I found out that they say by the time you get diagnosed with Dysautonomia, you have 5 to 10 years to live. And for that, I call B.S.

It’s not acceptable. It’s not going to happen. So, to make that not happen, I’m having to change even more of my life. You know, losing weight, exercising, and eating right. I try to get to the gym to go swimming a few times a week. I go with my daughter on Sunday mornings to the ranch to see my horse and then to the gym.

Or I go with Sharon to the ranch to see my horse and give him carrots and things, but I can’t walk him around the arena or ride him. I just basically pet him and brush him a little bit and give him sweets like carrots and apples and stuff.

But the future, I don’t know.

I’m very involved in my church. I try to go a couple times a week and that is even getting a little bit difficult. So, I’m not sure about the future.

I’m hoping that this CRPS Inside Out blog, will help people. My biggest desire is that someone can be reading about my experience with CRPS and feel better about their own experience. Or at least find some hope here, because hope is the biggest thing if you want to get rid of depression or anxiety or suicidal thoughts and tendencies.

You need hope. That’s the number one thing that keeps you going, we must have hope for the future. And so, I find hope in the next book I’m going to write, I find hope in my family and my children, and my friends — all my relationships. I have hope in those.

But I do have to spend time meditating and being quiet every day. I just have to make sure that I’m resting. And not do anything that’s going to cause more harm. Because, with CRPS, if you get an injury, basically that place is going to have CRPS too. That’s not always the case, but in my case, that has happened. My right thigh just won’t cooperate. I sprained it somehow when I was swimming, jumping up and down in the pool doing water aerobics. And so now my thigh is all on fire and it hurts, and it sucks. And then, if I get scratched or bumped or bruised or something, I get flare-ups that go to my whole body. Which is also no fun.

But I find hope. I find hope in my faith. In the Bible, there are so many verses about how to have hope. So, the Word of God is important to me.

Sharon:

And God’s grace is sufficient.

Jana:

Yeah, for sure.

Sharon:

We kind of forget that one.

Jana:

That’s true and, I mean unless I have a big miracle, my life is going to be shorter. I just have to accept that, go with it, and try to do the best I can every day for my family. It’s for them that I get up every day and follow my doctor’s advice, not for me.

Sharon:

So, is there anything else you’d like to share?

Jana:

I don’t know. That was a lot. I’m getting emotional right now. It’s an emotional flare-up! But really, I would just say if you do have CRPS, hang in there. You’ll find a way to navigate the symptoms and live without always focusing on them. I know it’s possible because I have done it.

My relationship with God is the only thing that keeps me going. The Bible says that we can “hope in His Word”, and it’s true. I can find hope in the Bible. I can feel better. I can feel inspired and start making great plans for my future. I can get in the presence of the Lord and feel joy.

And I still have a baseline pain that is about a four right now, which is really, really low because I had a dorsal root ganglion spinal cord stimulator put into my back. And I’ve had it now for going on four years and it changed my life with CRPS. It totally changed my life because now I’m not at a baseline pain of seven or eight every day, you know, so I’m not having to take all the opioids that I took in the beginning. Back when I first got diagnosed, I was taking tons of Morphine, Fentanyl, and Dilaudid, and you know that was just giving me kidney disease and damaging my organs, so now I just take something if I have a breakthrough pain of some kind. But it’s not every day, and I really try to not take extra medication every day because I already have to take so many pills for other things.

Sharon:

Right.

Jana:

So, if I get in pain, I just try to, sit down or lay down and put my feet up. And I just kind of chill because if you’re stressed the pain gets worse. If you have anxiety, the pain increases.

I can’t get into isolation. I have to stop myself from that, and the way that I do that is that I…

Sorry, I just got a notification on my phone. I got a text. Yeah, now I don’t even know what I was saying.

See, this is part of it too. I have brain fog, and I can’t remember the last thing I was talking about. Jeez!

Sharon:

You were talking about not getting into isolation.

Jana:

Oh, not getting into isolation because isolation just throws me into depression. With CRPS it is really easy to just want to stay in bed and not walk and not do anything, and the consequences of that are way worse than the pain of walking because of our emotional and mental health.

Our well-being is dependent upon our ability to be with other people and to experience love with other people and joy and happiness and all those things. We’re made to do that, to have other people in our lives, so when we don’t, we can get pretty messed up.

Sharon:

Well, thank you for answering all those questions.

Jana:

Sure, it was fun — a little emotional, but fun!

CRPS is Complicated & Brutal

Photo by Drew Beamer on Unsplash

Five Rare Diseases & a Dozen Others

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.

I really hope it’s that easy.

CRPS & Weight Gain

Photo by NeONBRAND on Unsplash

Give Me a Break

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.

So, I write.

Disability Hearing

Photo by Haley Lawrence on Unsplash

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.

If You Don’t Mind

My most recent drawing for a handmade book I want to make.

I’ll Share My Creativity

Something has been bothering me lately. How can I host and maintain four blogs with podcasts on three of them, and videocasts on one?

I’m an artist and author and have a lot happening in my life regarding my health. I have been diagnosed with five rare diseases or disorders, yep five. Not to mention what I call my lesser diseases, such as Type 2 Diabetes and Fibromyalgia which are a result of some of the other illnesses. The annoying five are:

  1. CRPS (Complex Regional Pain Syndrome)
  2. EDS-3 Ehlers-Danlos Syndrome Type 3)
  3. POTS (Postural Orthostatic Tachycardia Syndrome)
  4. DID (Dissociative Identity Disorder)
  5. PNES (Psychogenic Non-Epileptic Seizures)

I have separate blogs for CRPS and DID. I also have a site I rarely post at which is janarawling.com for my art making (though I forget to post stuff). Add to that, I am a Believer in Christ Jesus and have a blog site for that at HardwiredForLife.com (I have a partner on this one), and well, you see where I’m going with this. I get very tired and can’t post to all of them consistently, and I don’t. I suffer from symptoms every day mainly including pain, seizures, overall fatigue and falling down (sometimes breaking bones). I’ve had to stop working as a commercial art professor, which I miss very much. But I can still write when I feel okay, and I can make some art, which brings me joy through the pain.

I was wondering if I should combine some of the blogs, but I’m pretty sure that someone with CRPS doesn’t care about my DID, DIDers don’t care about POTS, and so on. I’ve been asking the Lord about it and He told me that the common denominator for all of my sites is not only me, but also is my art making, my creativity.

God told me that DIDers, CRPSers, Believers, and Artists all enjoy creativity. So, if you don’t mind, I will post the same art making and writing to all of my sites. That way, I have some universal content. I will still keep everything separate, but some creativity will be the same.

Whew! I feel better now. I feel that sharing my creativity is something I can do that will bring me tons of joy. Plus, I’m working hard on my healing and joy is a precious remedy.

Thank you for participating in my journey from wherever you’ve come.

With Love,

Jana

P.S.: Can I pray for you? If so, contact me via email, or just say, “Yes” and I will be honored.

P.S.S.: I’m currently writing a book called, “Hardwired for Creativity: Art Supplies for the Mind” that should be finished sometime this year. I’ll let you know when that happens.

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?

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.