Hope Restored

Hope restored after 6 months of hopelessness is hope forward. I have not yet revealed that I’ve been in the voluntary care of mental health services. I have not revealed what it takes to move on after an emotional catastrophe instigated by the inability to control physical pain. I’ve revealed in part all that I’ve done to survive without pain management and without any prescribed pain related medications at all. I’ve shared that all I’ve had is my SCS/lower extremity. I’ve shared options I had to choose for myself to make it this far due to an increase lower and an unrelenting flare upper, and I’ve shared that I had to choose an option that I never wanted for myself. Approximately 5 weeks ago, I transferred my care to the U.C. Davis Lawrence J. Ellison Ambulatory Care Center which is a teaching facility. Internal Medicine. This was done with the assistance of my therapist’s managed care assistant. One does need a referral from another health care provider to be apart of what I’ve chosen. The teaching, learning and research part of UCD. I want doctors to learn from my complexities, and in this I pray new medications evolve or perhaps some day a cure for CRPS. I hope that together we can learn what causes spread, an injury taking on an abnormal healing path and why it’s always disproportionate to the inciting event. I want my life used while living to be studied, for me and others, and while I’ll give it when I’m gone too, lets learn now so that maybe I can also be blessed with a remission rather than a progression. I’ve already met with my Primary Care provider who gave me 2 referrals. One referral I’ve shared and that is to the U.C. Davis Spine Center – Pain Management which I go to on the 4th of next month. The other was a new Med-Psych which I went to today. These students and the doctors who lead them have been amazing. I’ll not yet reveal who they are, but I must share the compassion and the comfort they provided. Today, my new doctors, stated “We’re glad you’re here, we want to help you”. We want to be a team with you”. The weight on my shoulder suddenly lightened. My therapist currently at another location has told me, several times already, how bright I am, my compassion, my empathy, my care-giving. My new one’s have stated same or similar. My expectations are reasonable. Today, these 2 thanked me! And I had to thank them more!

I’m not crazy! Confirmed again is that I currently (It’s getting a little better) I go too low due to Major Depressive Disorder – Severe. Previously I had the diagnosis of Mild Recurrent Major Depressive Disorder. So I was being maintained with Cymbalta/Duloxetine as the dual combination assistance it provides. Depression and Nerve Pain. So that there are no mistakes in your mind, my depression is secondary to CRPS and the constant roller coaster that’s come with it. I’ve never taken an abundance of opioid pain reducing medications, but I had been helped with a little. I’ve never had more than the little, and I’ve never taken additional for break-through pain. I really tried. There were so many days that I wished my only med was a little higher and there were other times I prayed I had something to help with pain above what my 5 mcg/hr of BUTrans could cover. When I asked the P.A. at my pain management clinic of 12 years, less than 2 weeks before trying to leave to accept an award from Dr. Earl Bakken, Co Founder Medtronic, she did put in to increase me to 10 mcg/hr for 2 months, but not without stating fabrications into the record. I never got it for the purpose I prayed for. I went to receive my award having been without any pain medication and without what I had been currently withdrawing from. When I was dismissed from that practice it what for attempting to correct errors in my medical record 6 days after a 72 hour suicide hold that I did get to come from 2 days later. My medical records indicate that I never told the P.A. of the continued denial of Cymbalta and Zonegran, but a week before my break down, I called and asked to speak to the psychologist on hand. I had also appealed the denial via my pain management provider, not attorney, who had appealed on my behalf. I had already won on January 16th, yet, I never… never received those medications again. It is not possible that my provider wasn’t aware because it was appealed through the clinic with my signature. In addition, when I paid $30 for only 10 sheets of medical records, I found that it also states I work full time as a Graphic Designer. I wish that I was. I don’t work full time, in fact I’ve not worked any gainful employment in 15 years and I’ve never been employed as such. Accidents happen right? Oversights, assumptions? Idle mistakes? I did attend school in 2005 for a Corporate Publishing degree and I was nearly finished when I took a leave to have my first Spinal Cord Stimulator permanent implant, I returned 10 weeks later, yet I’ve not received that full diploma. It’s possible the Graphic Designer came from that, otherwise, there’s no other way. Understand why I tried to correct discrepancies? Fired! There are other mistakes. To set any record straight including the “record” I was never let go by my doctor, anesthesiologist/surgeon. He gave me a block only 3 weeks prior, and I did not ever see him after. My physician did not let me go. The P.A. did using his name. 12 years of a constant. I was a model patient in compliance and utilizing tools that I learned and have gone on to teach from the functional restoration program I completed in 2009. I cannot at this time reveal all, but I will. I’m trying to do it without destroying someone else’s retirement. Yet, how can we, any of us, teach patients to be their own best advocate if we can’t be? If we’re done the first time we ever disagree?

Today, I allowed my new doctors to increase my current 20 mg of Duloxetine that I only just started 5 weeks ago to increment up to 60. 60 mgs is the therapeutic dose to assist in nerve pain.

(Added July 31, 2016)

I’ve learned to not show pain behaviors and I’ve learned not to guard. I learned that the world doesn’t want to hear “chronic pain patient” and I learned that it was my responsibility to be a productive member of society, regardless. I fulfilled everything that someone else taught me and I did it well. I thought that maybe, just maybe, my own providers might be happy that I did this from what I had learned from them, but when I mentioned that I had succeeded somewhere, my records implied enough that the WC insurance company denied approving those medications.

To this day, I have no WC provider for my lower right CRPS extremity. Settled for lifetime medical in 2008. This includes, no physician coverage for maintaining my SCS. The new pain management cannot include that foot because it is another’s responsibility in care.

I’m still very much on my own with a part of me.

I’m back the best I can be. I may never be back to what was, yet I’m back to do all I can do for you because I’ve already been where many of you are heading, I’ve been there in each and most situations a patient can be, and I don’t ever want you to go where… there is no hope.

Hold on, really tight, and hope might be possible again.

TwinkleV @rsdcrpsfire #StrongerThanPain

#StrongerThanPain

 

(Edited to add and attempt to correct typo’s)

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Endoscopic Retrograde Cholangiopancreatography 5/21/13 Due to Gall Bladder Removal Fiasco

TwinkleVanfFleetJPDrainMarch242012This entire ordeal began with my emergency Gall Bladder removal 14 months ago at UC Davis Medical Center in Sacramento California. When I awoke from surgery I learned I had a small internal bleed and that was why a JP drain (Jackson Pratt) was inside my side by a long tube. I also learned that a small piece of Gall Bladder was not removed but no one went into details why. I asked if it would cause me any future problems and I was told it would not. I was sent home days later with the JP drain still attached to my body. At home I was required to measure the blood that had accumulated in the drain bulb, measure it, record it in a log for the doctor and discard the blood into the toilet. I had to do this 3 times a day for 8 days. I could only sponge bathe and stayed in the hospital gowns even at home. I had to pin the JP drain to the gown otherwise it would pull out of my body.

All year long I continued to have pain in the same area right beneath my chest, under the right breast, behind the chest wall, an opening and closing feeling and as it opened and closed a feeling of a fire place poker being shoved in and out.

Everyone thought I was crazy. It couldn’t be my Gall Bladder, I didn’t have one!

Late February of this year I began to have severe pain where the Gall Bladder use to be, I could hardly breathe, I deal with CRPS pain and average a 7 daily, but this pain shot strait to a 10. I thought I was dying! My husband took me to the ER. They didn’t believe it to have anything to do with my upper belly, Gall Bladder either, Xrays showed 2 clips from that Gall Bladder surgery, my Spinal Cord Stimulator (SCS) and it was dismissed as constipation. I’m sure I was constipated too with the meds I take, specifically Suboxone at that time which I took for CRPS pain management the last 3 years, but that’s not what the pain was from. I was sent home with the suggestion to follow up with my primary asap. I did!

He ordered an ultrasound right away. The ultrasound showed I still had stones which was believed to have been inside me since the original Gall Bladder surgery. It also showed inflammation and re growth of tissue as the posterior wall of the Gall Bladder is adhered to my liver.

I was sent to a surgeon. I told him how everyone thought I was nuts when I mentioned the pain being so similar to the original Gall Bladder pain, he said “Well you might be nuts, but it IS your Gall Bladder!” He had a great sense of humor and finally some validation.

In order for him to fix me he will have to cut part of my liver away.

He first opted for an MRI, but since I have an SCS (Spinal Cord Stimulator) I am unable to have one.

Instead he ordered a ERCP.

On Tuesday May 21, 2013 I am having 2 procedures done. The ERCP (Endoscopic Retrograde Cholangiopancreatography). I will be under full anesthesia while the camera is inserted down my throat and for the removal of the stones from my bile duct. If there are no stones found, but they were there, he will still cut the bile duct clean it out and leave a stent or tube behind.

If I end up with Pancreatitis as a result of the procedure I will be admitted to Mercy General Hospital in Sacramento for a few days, if not, I will get to come home the same day if no complications. I also learned that one of the 2 procedures may be rescheduled due to time. I hope not.

This has been going on since late February and the pain while it comes and goes can be so overwhelming even a second trip to the ER 3 weeks ago with an injection of both Toradol and Morphine then Morphine again an hour later didn’t help for 2 hours after I got home.

This needs to be done for me to go on for the actual surgery on my liver. While the stones cause pain, so does the that piece inflamed on my liver.  It’s growing new tissue. It feels like back labor. My right side beneath my ribs throb in a way hard to describe.

I feel like that surgery in weeks or months down the line.

One thing that does bother me a bit is that in my xrays at UC Davis ER in February the clips were seen. In the ultrasound less than a month later they weren’t.

I hope I didn’t spring a clip or two. Kinda funny the way I said it, but not really.

This story will have a continuation…

~Twinkle V.