The endless in-between

2016 is ending on a hard note, harder than I could have possibly imagined.

The CRPS has spread into my right arm, my SECOND spread in 2 months and my 5th spread overall.

Specifically it has decided to descend upon my bicep where the PICC line was placed for my 4th and most recent ketamine infusion (which I received Dec 6-12 2016). I am also getting A LOT of weird pain in my right wrist and hand. Some of the pain in my right hand/wrist may be mirror pain but I am 95% certain that the nerve/muscle/bone pain in my right upper arm is yet another CRPS spread because it hurts more NOW than it originally did which isn’t how normal healing works.

My main pain dr, Dr Gary suspects something systemic is causing my CRPS to all of a sudden start to spread again.

So I am going to be re-tested for Lyme Disease AGAIN (I have been in remission from Lyme for awhile, I was last tested in May 2016), I will be re-tested for Bartonella (another tick borne bacteria that I struggled with A LOT ) and Dr. Gary will also be having a Cunningham panel run which will asses the antibodies in my central nervous system and help guide the treatment process going forward. I have had some mold tests done earlier this year and they were the WORST my dr has ever seen in his VERY long career so there’s quite a few possible culprits as to what could be systemically going on inside of me.

There is of course an issue doing the blood work. Sigh.

The issue is this: the “injury” that triggered the spread to my left arm and hand in November was an IV being place into my wrist before my endoscopy… and the spread to my right arm is from a PICC line. My body (for whatever reason) is interpreting ANY needle sticks as cause to spread so any needle stick going forward is risky and could have crummy consequences.

I don’t know what will happen when they try to draw blood, Im honestly terrified. I could end up with CRPS in yet another place and it’s a risk Kaplan says we must take because we have to find out whats going on inside of me.

My entire left arm and hand cannot even be accessed anymore for blood work because it would be EXCRUCIATING. Just washing my dishes or washing my left hand REALLY hurts so I cannot imagine a needle in ANY place where I have CRPS. A lot of the best spots on my right arm are scarred up from doing 8 months of IVIG.

I don’t even know where they will be able to draw blood.

I am so scared. I am so so so scared. This is beyond anything I could have imagined. Having my CRPS continue to spread is something I have lived in fear of since I was diagnosed with CRPS…and now its happened five times.

Am I going to have full body CRPS soon? CRPS can spread to internal organs and the thought of that is pretty terrifying too. Like how do you do physical therapy to a liver or a kidney!?

It’s hard to explain what its like to have INTENSE nerve pain, muscle pain, and bone pain in SO MANY places.

It hurts more than I ever imagined it could.

I know that my dr is right and that something is wrong systemically to have this keep happening. I just am so overwhelmed at the idea of more things wrong, more medications, more treatments.

I was hoping 2017 would be about becoming more normal and leading a less medical life…but instead I am looking at becoming sicker and sicker and having even more medical stuff be in my day to day life.  Depending on what my blood work shows, I may be doing A LOT of antibiotics, more IVIG, possibly IVIG combined with plasmapheresis, possibly a port in my chest to bypass anymore needle sticks.

My dr has warned me that I may be getting on A LOT of medication.

I’m scared and angry and terribly nervous at what’s making my body stuck in this nightmarish cycle and I am equally nervous about what treatments lay ahead. Treating tick borne bacteria means feeling WAY worse before you feel better…and feeling even worse is something Im not sure I can even handle.

My heart hurts. My body hurts. Pain. Pain. Pain.

When my CRPS first became severe in Feb 2015, I listened to this cover of Wait It Out over and over and over while I cried in the bed I could barely crawl out of. It spoke to me in a way few songs do.

“Where do we go from here?
How do we carry on?
I can’t get beyond the questions.
Clambering for the scraps
In the shatter of us collapsed.
It cuts me with every could-have-been.

Pain on pain on play, repeating 
With the backup makeshift life in waiting. 

Everybody says that time heals everything.
But what of the wretched hollow?
The endless in-between?
Are we just going to wait it out?”

I listened to it again today and reminded myself that I survived that terrible time where I could barely crawl to the bathroom and I survived the first two spreads and so on and so forth.

I will survive this, I just have to wait it out while I’m stuck in this endless in-between.


2 thoughts on “The endless in-between

  1. I’m sorry to hear you’re in so much pain. It hurts me to hear it! You will survive though like you said…it just really, really sucks. You’ll be in my thoughts xx.

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