Rejection & CRPS

Photo by JJ Jordan on Unsplash

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.

Undignified

MeetingMap

Healing Service in San Ysidro, California

I rarely fall under the power of Holy Spirit… It can be undignified. But last night I not only went down, but I also encountered Jesus (started crying) and didn’t remember much of what happened. Apparently, I was being videotaped, got tapped in the head and stomach with the microphone, and I kind of remembered being cheered on for miraculous healing.

I’ll take it… undignified and all. I wanted to be healed so badly. So, am I healed? I believe so. I feel different, lighter and more joyous. So much so that when I got my SSDI determination today and was denied, I was okay. My head is spinning a bit but not horribly. I should be sad, angry or something, but I feel relieved. It’s over for now. My next step is to think and pray about my next step and I’m confident I can do that and get some wisdom and strategy.

By the way, my feet feel amazing. I feel like I can walk, so I’ll try. I feel like my head is clear, so I’ll write. I feel like a new person, so I’ll dream again. And I’ll praise God.

The 5-hour roundtrip drive to see Mark Hemans was worth it.

Still wiping the snot from my nose,

Jana

P.S.: The meeting was at the border of Mexico and these lyrics ran through my head on the drive home (Holy Spirit’s got jokes.):

“It is the night

My body’s weak

I’m on the run

No time to sleep

I’ve got to ride

Ride like the wind

To be free again

 

And I’ve got such a long way to go (such a long way to go)

To make it to the border of Mexico

So I’ll ride like the wind

Ride like the wind…”

 

By Christopher Cross

Weathered & Rough

Weathered Plywood

I shot this at my house and it really connected.

It’s How I Feel

I’m really having a tough time looking at Psychogenic Non-Epileptic Seizures (PNES) as another possible diagnosis. I feel raw and I’m not sure about how I will start to heal and move forward. I do know that this Blog and Podcast project has helped tremendously.

I know that I’m not alone, even though I haven’t come across anyone yet with PNES. I’m just starting research regarding causes, symptoms, treatments, prognosis, etc. And, I can only do so much research before I get pretty darn sad. It’s the same way for me with CRPS. It can get depressing to read about.

I want to be optimistic, but I’m thinking that’s been part of my problem. I have been accused of being too positive before—I guess that’s a thing.

Being too optimistic means I have stuffed down the problem. The problem? Trauma. Multiple traumas, including repeating molestation and incest as a child, causing dissociation and dysthymia. Yep, I’m a highly functioning person living with comorbidity. Now, everyone knows, and I am glad. I’m tired of hiding it. (I hope that doesn’t keep you away from me… I suppose that’s the real fear; being alone.)

I’m also certain that the repeated traumas in my life have something to do with my being highly sensitive and intuitive. I used to get hurt very easily socially and psychologically. I probably still do but know how to shut it down quickly all under the guise of emotional intelligence.

I can’t tell you how many times as a child I heard, “Stop crying or I’ll give you something to cry about.”

The reason I bring up being highly sensitive is that other people have experienced similar emotional pain and trauma, and they’ve survived. I feel very deeply, which has made me susceptible to additional pain. Go figure that CRPS is the most extreme kind of pain one can experience.

Perhaps, I’m punishing myself undeservedly. I can see that. I feel illogical that it was somehow my fault. I don’t remember ever being told that, but it’s possible. I’ll have to ask God to show me what happened in more detail so that I can process the information and begin to heal.

Sincerely weathered,

Jana

P.S.: Stay strong.

Extremely Raw with Podcast

20190604_220925

Hope, 2015 by Yours Truly

Hiding in Plain Sight

I said I was going to be raw for this Blog. So, here it is….

I saw my neurologist yesterday and his news was honest and disconcerting. I must have more tests to see if my seizure episodes are epileptic or not. The “or not” is that I may have yet another condition called Psychogenic Non-Epileptic Seizures (PNES).

And there it is. I thought this might be the case. What does it mean? It means my seizures are real, but they originate from a combination of psychological conditions. Some known causes include anxiety, dissociation disorders, post-traumatic stress, etc.—basically, forms of severe and chronic mental stress.

Ironically, I’m can wrap my head around this one.

You see, I’ve had a secret and here it is… I have been blaming my current illnesses on my body, or at times on God when the reality is that I know I haven’t dealt with a lot of trauma in my life. I have pretended that everything is okay and that I’m past all the emotional pain. I have pushed on in a highly functional way at the cost of my physical health. I have known that psychological brokenness internalized continues to manifest as dis-ease in my body.

There it is. My secret.

I seem to have it all together, but I don’t—seriously.

CRPS may even be another symptom of internalizing trauma. I don’t know. The only thing I know is that today begins a sober journey of psychological healing I wanted to avoid.

Incognito no more,

Jana

P.S.: I think I’ll start with one hour at a time, rather than one day.


Extremely Raw, Episode 10

No More Swelling

 

It’s my writing. And maybe my heart.

I’ve spent too much time sitting at my dining room table with my best friend — I mean my laptop. It’s what I know. It’s what I do. A chef cooks. I write and design.

So, I’ve been getting up more often not wanting another trip to the ER. I have been practicing my violin standing at my patio door with the sheet music taped to the glass. I’m thinking of investing in earplugs as I shift my weight from side-to-side to get off my CRaPS foot as much as I can.

All-in-all life is amazing. God is good. The flowers are so fragrant and beautiful in the front yard that I can’t help but grin. It’s curious how the pain dissipates when I focus on the wonders of God’s holy creations.

Like us. Humans. We are complete mysteries. We are fragile and indestructible. We are weak and we are strong. We are loved and cared for without understanding.

If anyone questions my love for Jesus… I can only say that I’d rather live a life of devotion and love instead of one full of drama, loneliness, and emptiness. God is my strong tower. He is my hope and dreams.

CRPS can’t get me in His arms. I can’t do anything in life without Him.

So, with or without Jesus create, make, laugh and love.

Lots of Love — One Day at a Time,

Jana

P.S.: I want to see your art, hear your songs and let you know you are loved. Email me at CRPSInsideOut@gmail.com.

Hopeless to Hopeful with Podcast

 

Things Do Get Better

It was a rough day and I was starting to feel hopeless about my future with CRPS, POTS, and Fibromyalgia. But my friend dragged me to a worship service, and everything changed. I could barely stay and was in a lot of pain when I got honest about my feelings and spent a short amount of time praising God for all He has given me, and my attitude changed.

Lots of Love—One Day at a Time,

Jana

P.S.: Check out a full list of my Podcasts on Castbox.com

CRPSPain_PodcastIcon

Episode 9

 

Body Failure with Podcast

ChairIntheYard

Have you ever felt this way?

I wrote this a few months ago and it still has a ring of truth that I can’t deny….


My body is failing. All my suffering is my body’s fault.

Can I say that it’s not my body’s fault?

I have blamed you. You have failed me, and you keep failing me.

The body reflects what’s in our mind, right? How can that be so? If I was born without a leg, would I blame my mind or body?

Do I blame God?

I do. Deep down I’m sure I do. How do I get over this and live with joy? How do I find peace?

With faith, my dear, with faith.


CRPSPain_PodcastIcon

Episode 8

 

 

Take it one day at a time,

Jana

P.S.: I want my miracle… any day now would work for me. Invisible Disabilities and Illnesses are real and they are crazy-hard to live with.

Doing My Nails

It’s the Little Things in Life

I love to do my nails. I always did them on Sunday afternoons when I used to work. These days I’m not always able to do that, but I really enjoy it when I can. My polish collection has dwindled but I still have some fun colors.

I joyfully used bright colors with glitter accents whenever I could. I had my nails, my hair and my boots for beauty because I felt had to be plain at work. I chose to go business formal or casual in solid grays, blacks, and tans. I didn’t need the extra attention wearing florals and pretty pinks. That glass ceiling got lower when I dressed like a girl. Just saying.

I know that when I can enjoy the little things, I feel less pain.

It’s a distraction and as you may know by now, I am all for healthy distractions. Anything that can keep us off the opioid drugs and any other medications that have extreme side effects. We don’t want our organs shutting down—these are often the “complications” that CRPSers die from.

So, I encourage us all to find some little things we can do for pain management. Little things that are enjoyable, hopeful and full of loving self-care. Take the time; it’s worth it.

One day at a time,

Jana

P.S.: Smell the roses while you’re at it.