I haven’t seen a physician for CRPS in nearly 6 years, nor for my Spine for nearly 5. These have to remain separate. I can’t be treated as a whole person.
Now that my Advocate Son has moved his family back home to Sacramento, I’m considering making an appointment next year for diagnostics. Scans and blood work to see where I’m at with it all.
My Spinal Cord Stimulator and CRPS is Worker’s Compensation. It’s a mess. I was denied continuity of care in 2018 after the patient abandonment in February 2016. I tried to re establish care after that. I was approved for a pain management physician 1 time, and denied any follow-up. My attorney refused to appeal.
I honestly have no idea how to go about this again. If my attorney doesn’t GAF either, what can I do?
This is the part of the fight I have no energy for. It causes my depression and anxiety to worsen.
The thoughts alone provokes panic attacks.
I have no expectations of treatments or care. We don’t live in that world anymore.
I was abruptly dumped without any regard to CRPS and intractable pain by my one and only pain management doctor of 12 years.
The same physician who implanted my SCS, did numerous lumbar sympathetic nerve blocks, and maintained medication management.
My spinal cord stimulator hasn’t worked properly since the physician dismissal. I don’t even know for certain if I’ve had lead migration all along. It doesn’t work at all anymore.
Before it stopped working it was causing me pain. I’ve had it since 2006. A second lead was added in 2009, when I did have a migration then. My battery was replaced in 2014. My leads are original. Even though my 2014 battery was an update, and MRI compatible, my leads are not.
My physician was on vacation when his physician assistant fired me. I had been hospitalized a week before for a suicide attempt. I can barely express anymore how much pain I was in. I was bruised from head to toe that day. Medtronic met me there to do an integrity check on my SCS.
My doctor was also in the process of selling his practice, and most of the office staff I’d known for years had already been relocated to new positions elsewhere.
I had always been in full compliance. My fire letter stated the reason for dismissal was “Patient/Physician breakdown. That’s it!
I never got to the point that day of an xray referral to check my leads.
That day also began the abrupt discontinuation of all medications. Cymbalta, Zonegran, BuTrans, I can hardly remember any others anymore. I know those experiences are in this blog though. I haven’t been able to go back and look. Cymbalta withdrawal hit me hard. I took it for a decade or more.
I went to an ER, I was sent away from there also. I was still suicidal. The CDC recommendations for opioid prescribing had begun. Nearly every chronic illness sufferer would now be considered a drug seeker. Some refer to this as the CDC opioid “guidelines.”
I don’t have any trust now. I don’t even know how to regain it, or who might be trustworthy. I had trust in a couple of people, but my poor mental health had me push them away. I had to before they hurt me also.
I turned to alcohol again.
I went from being a really good advocate and an advocacy director to losing most of it and giving up the rest.
It took me a long time to overcome the pileup of pain and emotions over it all.
Several other family traumas were occurring simultaneously.
1 Corinthians 2:5
5 That your faith should not stand in the wisdom of men, but in the power of God.
This!!! is all I had to hold onto.
I’ve learned many natural and holistic ways to managing myself since. There’s no actual quality of life. I’m alive,, yet hardly living.
I have to constantly shift my thoughts to all that is good and stay as focused as possible on those things.
It keeps me from sinking.
This upcoming January I’ll be 3 years alcohol free. I’m not ashamed to speak of this. It was what it was.
Some days are so bad, extremely intense, pain so severe you lose your mind with it and there’s nothing I can do but pray and stay in that prayer.
I’ve always been close to Jesus, …
but this travesty has led me closer to knowing God.
And I’m blessed to know him.