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New Personal CRPS RSD Journey - You can do it

NEW CRPS STORY

2015-09-16

NEW CRPS STORY

 

This month’s CRPS/RSD story has come from a lovely lady in USA called JANICE NARGI. We hope you enjoy reading Janice’s CRPS story and gain strength and support from it to help you cope with your own life with CRPS/RSD.

 

This is a long and detailed story but Janice has kindly include some pictures of her CRPS limb as well. Here’s Janice’s CRPS story:

 
Where do I begin? Dr. Goldman and I discussed this very thing, and he suggested I start at the beginning, which I found ironic because in reality, this was the end of me not the beginning. And when exactly was the beginning of the end of me? Was it the moment I decided to walk away from one position and into another? Yes. The day I met Chris is the day I started to lose me. I am 48-years old and I am actually back where I started, with my dad. The first person to hold me, the hug I desire when I feel lost. Mom was right I am a daddy’s girl. So, why did I run home, away from the life I created for myself in Arizona- my sons, granddaughter, daughter in laws and my friends? Because I just couldn’t bear to see anything else crumble to the ground. It started simply enough. I left Handmaker, a cozy job that began to feel stifling, closing in on me (one day I should examine what makes me feel stale and stifled once I create the job that essentially makes me feel like I am coasting). I had already decided to leave management altogether, when Ed called. “Come meet my boss, our facility needs you.” He set a first meeting with Chris. One meeting turned into several emails, calls, a second meeting at Starbucks that extended into dinner at McMahons with Chris’s entire family. Chris and I clicked immediately. I would say there were sparks, and I fell immediately for his charm. I believed I found the administrator who would be my work husband for the rest of my career.  
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We spoke of similar ideals and found our philosophies were aligned. We joked and kidded around easily; he was like my younger, cooler brother. He came off as real, comfortable, charismatic and fresh. Not to mention he is easy on the eyes- a resemblance of Mark Wahlberg. Chris Romney, I was sold the first five minutes in. On April 13, 2013 I accepted the position and drove to Dessert Blossom so Anton could introduce to the “Plum” way- the Matrix, reporting processes, the systems. On the 27th I walked into Pueblo Springs, Connie gone Thursday night, Janice in place on Friday morning.  When Chris explained the way it would work, it sounded like the best plan, but when I sat in that room, I knew immediately I had made a mistake. For the second time, I accepted a position and building without meeting the team. It was pretty obvious in the first week what the issue was. The team was divided but the reason for it was that Chris did not trust his team. He unwittingly (or subconsciously- I will give benefit of doubt) pitted peer against peer and instilled an “only trust me” philosophy. He would preach about transparency, and gossip, but was a poor example of how he wanted the team to act. Managers were paranoid of each other, never knowing which one we could trust to discuss feelings or information. But when Chris and I were together, he asked for my assessments, plans, ideas and desires for the department, as well as for the building. I learned the staff, listened to Chris about each person, but formed my own opinions. I got to really know my management team, their strengths and weaknesses and capitalized on each one.  
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  In October we were expected to attend a “conference” with the Calari branch of Plum (the California and Arizona branch). Arianna was due around the same time, and Mammoth Lake CA was cold, rainy and the theme was “Western”, all of which I hate. I expressed my desire not to go many times, in meetings, in emails, text messages and in person. Chris told John and I to go purchase warmer clothes and western wear for the trip, on him. That excited me – I purchased a puffy coat and my first pair of Tom boots. Arianna was early, and Chris took care of the cold. On October 21st we flew into John Wayne in the OC (Orange County.) We stayed the night in a. Wait. No, I am wrong. Or, maybe I am right? The funny thing is I cannot remember for the life of me where we stayed.  This evening is not important or germane to the events to follow – must be why I blanked it out. This is most likely the result of post-traumatic stress, narcotic- induced fog and the desire to forget this trip even happened. Regardless, we met in the lobby early to go to Starbucks and then hit the road for Bishop. Chris drove the Suburban, John was in the passenger seat and I laid down in the back seat. It was obvious the men were having a ‘bonding’ moment. I worked on a grant proposal for the foundation I started 2 years earlier for drug prevention/education and assistance.  
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We stopped at a rest area, which literally had an outhouse. I changed my clothes because I spilled my coffee. At this point we were provided our marshmallow shooters and provided instruction. (Another crazy idea by Scott – let’s shoot marshmallows at the Bishop staff for hitting a 90% on their census- it really just made a mess for them to clean up.) I enjoyed meeting Craig and Melanie – the Administrator and Director of Nursing of Bishop Care Center. From here, we piled back into the vans for the short trip to Laws Ghost Town and Museum for bagged lunches and our afternoon activity of shopping downtown Bishop. For this I was excited – shopping was to be on PLUM, a way of honoring the team for a job well done in 2013. This concept was new to me and if felt nice to be appreciated. We enjoyed a nice sandwich- mine was tasty and vegetarian. It came with chips a cookie and a drink.  As we cleaned up, Scott, our Branch Director had another surprise for us. Instead of shopping,  “they” planned and rented Yamaha Rhino’s (I believe there were two or three) and had a private gun range set up for us to target practice, using three different guns – a small one, a glock and an AK47. I remember distinctly turning to Chris, and under my breath so only he could here, “Are you %$^$# kidding me?  No Way!” Shaking my head. He reminded me I was the newbie and I needed to be a good team player and have a good attitude to show the branch I was PLUM worthy.  (All the stuff they preach but don’t practice – except maybe Scott.)  
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Anyone who truly knows who I am knows I do not do adventures anymore. I am for whatever reason, afraid of adventure. I have had my share and my feeling is why tempt fate, and knowing my luck (or my unluckiness) I preferred safety to stuntman any day. But, I was warned – show the PLUM in you, Janice. Swallow the fear and trust Chris. So, I did. And I really used to. Like I said, he was the ‘work husband’ I never had and a brother to the core. We even joked about it until rumors went around we were sleeping together – THAT is how close we were. (In fact, at our first branch meeting, we both noticed that he and I joked and kidded around the entire time, while other teams sat quiet and never appeared to interact like we did. I actually was very proud of that– it was recognized by Scott and Duane and everyone thought we found our groove. I add this in because knowing how close we were in the beginning is important later on.) So, John, a calm and peaceful administrator from Crystal Cove drove four of us (A DONIT, Chris, the DON from Crystal Cove and me) up the trail. It was a slow and safe ride – he stopped at puddles and never deviated from the trail. I think the ride over six puddles lasted more than 30 minutes, because I recall starting to feel uncomfortable because Chris’ and my thighs were rubbing too close for comfort.  When I got off, I was happy I had been a team player and actually enjoyed the peacefulness of the ride.  
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After that, I was a good sport and attempted the target practice. I hit a target with all three guns, and only shot each one once – to say I did it and I was successful. Looking back I guess I can say I was fortunate I had not been shot instead of what did happen. Around 4:45pm, Chris told John and I he wanted to drive the rhino and invited us to join him. At first I was hesitant, but Chris was persistent, and I didn’t know the team well enough to just converse about anything. So, I reluctantly put on the helmet and climbed in the back behind Chris. Did I mention the rhino is not supposed to have a backseat? It had been illegally modified but at the time, I had no clue. I guess I missed the part where Chris said he wanted to give the Rhino a work out, see what it could do. He gunned the damn machine, reaching the governor around 29 mph. He did not slow down going through puddles, and I would hit my head on the roll bar through each one. I remember thinking, with tears in my eyes that I was going to have a concussion at the bonfire and I desperately wanted a glass of wine! God must have been looking out for me, I can only blame Him for the fact I taped the entire ride with my iPhone, hoping at the time to capture some of the landscape – so different from Tucson, creeks with running water, a waterfall, deer, and trees with actual leaves. I have to admit if I was not so worried about a concussion it was stunning. What I ended up with was a video of the two seconds that changed my life forever.  
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Chris must have realized we needed to get back to the group and decided to turn around and head back. However, he had to see how much the Rhino could give him in thrill and adventure. Most people who have driven as long as we three have know that left hand turns are less safe, right hand turns go with gravity, left hand turns do not- they are unnatural for cars, ATVs and even when bike riding. You can glide through a right hand turn; a left hand turn usually requires slowing down or even stopping before going into the turn.  Chris did neither.  He drove into the gravel on the right side of the trail and made a sharp left into gravel – causing the rhino to roll over on its right side. It actually bounced once, and in the first impact, my ankle was crushed under the weight of the rhino. I lost my phone in the accident, but it continued to film, showing my foot dangling at an odd angle to me – and of me shouting at Chris, “Oh my God Chris, you broke my leg! You broke my fucking leg! And it’s bleeding!”  And it’s bleeding. That was my cue to all the fracture was comminuted – through the skin. I somehow got out of my harness and sat on the ground beside the rhino. I asked if anyone else was hurt, but John just had road rash on his right elbow, and Chris was unharmed. He stood behind me so I could lie back against his legs. I noticed I was shaking, even though I was not cold. My foot was contorted at a 90-degree angle to the leg, and I could not control it at all. I ordered (that is the only way I can describe it, because my type A adrenaline junkie have to be the one in control ER nurse kicked in) John to hold my foot in place and not let go, ever.  
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It was excruciating when he aligned the foot into the correct position, but once he did the foot felt different. I wish I had written this down immediately after the injury so I can explain it to you. I do believe John saved my foot from being amputated. He was my hero that afternoon, and it will never be forgotten. He always shows up in my nightmares – in the beginning he was my savior. Now, he tries to save me, but I die anyways. I remember distinctly Chris trying to get cell service. The minute he did, he called Scott. Not 9-1-1. I recall asking him to hang up with Scott because I needed to swear again, and I did not want him to hear. He hung up, and I did swear. I then said, “Has anyone called 9-1-1 yet?” Chris promptly did – however, none of us really knew where we were so he had to have the dispatcher call Scott for further details.  Then John and Chris thought if we righted the ATV I could get back in and go to the bottom of the trail to wait for the ambulance. It was not going to happen, I would never get back into any vehicle that did not have four wheels, a roof and doors. I was adamant and they did not want to argue – I think they let me win because they knew I was in severe pain. It was sometime around here that I asked Chris for a sip of his water and he refused to let me. I wish then I had pressed the issue – but I believe I was going into shock and my brain was completely focused on NOT losing my foot, and getting to the bottom of the mountain to where morphine was hopefully waiting for me. What I do recall, aside from him denying me a sip, he had a different bottle than the rest of us– I even have a picture to confirm this.  
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  I remained on the ground for probably ten minutes before a plan was hatched. While we waited for help, I told Chris there was no way I could afford to be out of work six weeks without income. He assured me over and over again the company would take care of everything 100 %. Just worry about getting better, he kept saying. The men who set up the gun range showed up like the Calvary; Scott and a few others in the back all huddling around me, providing morale support. The men made a make shift splint and the fireman carried me into the cab of the white truck. John was not sure he could get in while holding my foot and I clearly told him I didn’t care how he did it, but he was not letting go of my foot and he is getting in the cab. He did it. The ride down the trail was bumpy and I started to give into the pain and the shock. They tried to distract me with silly talk, wanting me to talk about my kids and new granddaughter. I would not have it. I told them I was a nurse and their small talk was not going to help in this case – but I did joke, if they had a bullet I would bite on it, if a bullet was good enough for John Wayne, it is sure to be good enough for me. I was hoping had they given me one, it would have exploded, putting me out of my misery. EMS was waiting for us when we pulled into the turn around by Laws Ghost Town and Museum. The Paramedics helped unload me onto the stretcher. Of course, despite my objections, they removed my boot- but I still insisted John not let go-poor guy! He did not know which person to listen to. When the boot was off, I could see the amount of blood I lost. I wanted to see the injury but they would not let me. But when I saw their faces, I knew. It was worse than a simple break. It was then I got scared.  
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  I am in a ghost town. What kind of person breaks their ankle in a ghost town? Bishop is a one-horse town. What kind of care am I going to get? I am screwed is all I kept thinking. They loaded me into the ambulance and received orders to medicate me for pain. I told them I was a lightweight and to give me only 2 mg. All of the sudden I heard the EMT say, “10mg MS in.” Amazingly, I felt no affect. The pain was so intense, I have never felt anything so excruciating and numbing at the same time. I could not move my toes.   HERE’S THE 1st X-RAY DONE ON JANICE (CLICK THE LINK TO THE RIGHT)- New CRPS Story EXH ___ – Lower Leg Injury Based on X-ray-1   When they rolled me into the ER, my anxiety went into overdrive, as my nursing kicked back in. I was going to need surgery. Surgery.  Not what I expected at our budget meeting. I knew I didn’t want to go for a reason. The nurses fought over who was going to triage me. I told them to give me the damn laptop and I will do it myself. One of those lazy bitches asked if I was a nurse, and I said, “yes, I am bleeding profusely, want to help me?” Suddenly, both nurses came into the trauma room and one tended to my wound while the other triaged me in. After triage, and having my clothes removed, Chris was allowed in the room with me. He let me use his phone and the first person I called was Nick.  Then my dad, and then, Derek. I can’t recall the exact events in order, because I was very doped up. I know they took x-rays; the physician examined me and switched me to a dilaudid drip instead of morphine. I remember saying, “Now that is pain med!” The physician stated Dr. Mark Robinson would be in soon to evaluate me for surgery. He was on his way back from Mammoth Lake and is the Orthopedic Surgeon for Olympic Ski Team. A blessing in disguise – like God had His hand on me this entire trip. If I had to have this accident, He was going to protect me through it. His plan is to work it all out for good.  
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  Sometime after a woman had a C-section, they took me to surgery and placed an external fixator on my right leg. He was unable to reduce all the fractures. He explained that once I got back to Tucson, Dr. Steck could determine when I would have further surgery.  Dr. Robinson did not tell me the extent of my injuries, and personally I was too focused on the pain I would not have fully understood. The heaviness of the situation began to weigh unbearably on my shoulders. For the very first time in my life, I used the opportunity to use the pain medications to dull my mind, despite the fact it barely touched the pain. I could not believe this was me in the bed at the hospital with a huge contraption on my leg, hearing the possibility of wound vacs, amputation, infection… me! It had to be a bad dream, a dream I relived every time I closed my eyes, and sometimes with them open.   ANOTHER X-RAY DONE on JANICE’S LEG (Click the link to the right) – New CRPS Story EXH ___ – Lower Leg Injury Based on X-ray   When Chris and Scott came back to visit, my first words to Chris, were “I told you I did not want to go to this dumb retreat! Will you believe me next time?”  Scott apologized several times for setting up this activity. Chris never said a word after the one time he said sorry, that was captured on my video. I know they talked to me about our plans to travel back to Tucson, and I heard Scott order Chris to make sure I did not pay for one thing on that trip – no matter what I needed. Physical Therapy made sure I could hop with a walker, and then I was discharged. I barely recall the entire trip back I was in a narcotic haze. I have snap shots in my head of being in the back seat of the suburban; stopping at a drug store to get the walker and my antibiotics/pain meds; stopping to go to the bathroom – and John being kind enough to help me, again the hero, maintaining my dignity. I was told the F word was my favorite friend over every pothole. I do not recall being in the airport, but I recall someone moving from the front so I could put my leg up on the seat. The steward placed his jacket bunched up under the monstrosity of my leg trying to elevate it. I recall being in a fetal position and arguing that I am not using my seatbelt and I won. Sympathy and pity loses every time.  
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  I do not even know how I got to the house. I had to ask my children.  I remember calling Brian while even in CA asking to set up me seeing Dr. Steck and using Sunlife Home Health for pin care. He was so helpful and didn’t tell about how distraught I was when he brought Starbucks to my house. He was also an angel to me. Beckett my dog could not understand what was going on. I could not walk him. I didn’t want him near my leg. I kept shooing him to his bed. I felt bad, but he was clumsy and hit the external fixator causing amazing pain (eventually I gave him to someone who could play with and walk him – he deserved both). The couch became my haven until I decided I could go sit out on the patio to get some fresh air. However, to do that, I had to take pillows, a blanket, my laptop, my cellphone and a drink with me so that I had all I needed to relax a while. Being stubborn and probably the most independent person I know, it was hard on me to ask for help. Autumn, Stephen’s significant other was amazingly helpful, despite having just given birth.  
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  I think we returned to Tucson on October 25th, and I saw Dr. Steck on the 28th. That is when I saw my x-ray for the first time. The foot was completely severed from my leg internally. It was fractured- crushed actually- in 14 obvious places and the ankle joint was destroyed. He set surgery for November 4th at 6pm. He looked at the pin sites and then told me of the risks/benefits of the surgery. At this time he did mention the RSD – because I mentioned that even air/wind passing over my toes cause amazingly painful muscle spasms up the leg. We both decided since I have never experienced anything this traumatic in my life, let’s let the bones heal and then see what we have. On October 31, I could not handle being at my house with the pain I was in anymore. I called Dr. Steck’s office and told them they had to convince him to surgery today because I cannot deal anymore with the lack of sleep, pain greater than a ten and being as miserable as I am one more second. Dr. Steck called me himself and decided to directly admit me to St. Joes for pain control. Linda drove me to the hospital and from there I do not recall much – except seeing the MRI results, the pre-op and the post-operative time. Linda was with me when the anesthesiologist did the nerve block – and he was gorgeous. Unfortunately, I do not remember him much because he had also given me versed.  
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  Dr. Steck was brutally, but compassionately, honest with me post-operatively. He told me to imagine taking an egg from “this far up” (as high as he could reach) and then dropping it. The bones in my ankle joint resembled the shattered eggshell. He provided a very guarded prognosis regarding future movement et al of that ankle/leg.  I can’t recall all he said, but I recall the fact he could not reduce the fibula so it is bowed out and causes the foot off slightly at a ten-degree angle. He did encourage me that it is not a weight bearing bone. I asked what things I would be limited in doing, and he mentioned climbing stairs, wearing high heels, dancing, running, basically anything that requires more than a 10-20 degree flexion. This seemed to go from a basic fracture, to a bad one to the worst you could imagine. If I am going to do it, I am definitely going to do it the best I could- and I did. After I was released from the first surgery, I refused to take anything for the pain and I went through opiate withdrawal. It was horrible, but it finally gave insight to my son’s recovery. I did not want the meds in my house, and I did not want to become addicted too.  The withdrawals lasted about ten days, with cold sweats, nightmares, diarrhea and lack of appetite. When I felt almost normal and human again, I was able to tolerate the pain for the most part.  My sister and her children came to assist during that weekend; she cooked and cleaned all weekend, and felt guilty but so grateful! The eggplant she made and the shredded pork was like being home. Comfort food when I needed it most.  
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  In the beginning, Chris was very concerned. He visited me in the hospital; he texted me at odd hours asking strange questions, like “what basketball team do you like?” He bought me a Laker’s blanket and a huge stuffed elephant, and a UA Christmas stocking. Eventually he started to distance himself from me and started being an administrator rather than a friend. He would call me and tell me the nursing department was lacking leadership, while I am sitting in a wheelchair in my house, as if that was where I wanted to be. I was not allowed back to work because of the pain and the fact that Dr. Steck knew I would do too much, being type A and overly responsible. My fractures were too fragile to take chances.  And Chris could not get it. He felt the doctor just did not understand our line of work and that I could stay in my office and do my work from my desk. “Yes, Chris! I can deal with the customer service complaints with a smile on my face and fix their issues from behind the desk following the PLUM way and my way of leading by example, the customer is always right and fix by doing- all the while ignoring my intense pain and the fact I could give a shit about other people’s problems! I will be right in! I did go back on January 6, 2014, after taking the holidays to visit my parents. Little did I know it would be my last holiday with my mom, and the last time we would hug, kiss and say I love you face to face. Chris, ever the self -preservationist, made me take call while I was there so he would not be bothered over his Christmas holidays.  
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January was the plan Chris decided on. I gave in because I actually could not live on the workers compensation.  We decided we would pay Moira to be my taxi to and from work. This meant I went to work from 5:30am to about 3:30pm every day. Not only did I have to deal with the pain, have a self-esteem issue due to being in a wheelchair or a walker, having a leg that was still wrapped. I felt vulnerable because I was not independent, and worried I would be taken advantage of by my staff, or worse Chris. By then, Chris had sent me that famous text: You are blessed to work for such a { } company. Don’t bite the hand that feeds you! The next day, I started looking for and hired an attorney. Prior, the thought had never crossed my mind- well it was brought up by my father and Nick, but I did not give it any attention. After that text, I knew Chris was not worried about me but himself. The anger brewed for months after that text. I am not sure he is even aware of that, yet. But he will be.  
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  Despite physical therapy and pushing myself, the pain just would not abate. I saw Dr. Steck dutifully every two weeks, every month. Went to Physical Therapy without fail and followed every direction as if my life depended on it. And still there was no change. My ankle hurt so badly. And I could not flex or extend it well. There was one time I tried to run at work, and I fell on my face. The second time the nurses called me for an emergency, I walked to the room, taking my time, and the resident passed away. I walked back to my office and cried. Chris thought I was crying from the pain; it was my inadequacy that caused my tears. Nursing has always been what I excelled at. This was a failure and another reason for the depression erupting within my soul, darkening even the quietest light of my Faith. I was lost and this was the moment I knew it. My attorney suggested I start seeing Dr. Goldman, a psychologist well known in the community. And so, weekly I added his visits to my regimen: Dr. Steck, Therapy, psychotherapy and while I appreciated the fact he listened to me and provided coping strategies to handle the pain, stress, anxiety and depression, I still felt all those with the heat of a hot dagger in my heart. When I could no longer smile at Chris and pretend I was not filing a lawsuit against PLUM and him, I told the biggest mouth in the company. Of course, she embellished the story and when he finally confronted me, I told him I told her because I did not have the nerve to. I was sorry immediately afterwards he knew, but at least my two-faced feelings left. Now, I just had to deal with the tension of knowing we were beginning to hate each other.
New CRPS Story 2014-06-22

New CRPS Story 2014-06-22

 
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  Every time I saw Chris, I relived the accident. Anger would seethe just below the surface so when he would challenge me openly in a meeting, I would stand right back at him. There was a time he called a meeting to let all the department heads know we as Pueblo Springs were independently owned and operated and somehow PLUM became our managing consultants, paying them four percent to assist us in all our day to day activities. I did record this conversation, as I felt it was a message for me personally and I wanted the attorneys to have the ammunition if needed. Chris asked us if we understood, and while other managers sat silently disagreeing, I openly challenged him, stating that all this time we have had corporate consultants in the building, we have a corporate office monitoring our customer service, income and balance statements, demanding we attend retreats and meetings, and even US News and World Report state we are owned and operated by PLUM. Chris said we could have that conversation in private and I stated that we would not be having any future conversations privately.  Afterwards he came to my office, closed the door and told me I needed to decide if I wanted to be PLUM material or not. Another time, I was not paying attention to his droning on to social services during a stand up meeting, and when he said my name, I looked up from my laptop and caught Ruben’s eyes. I was chastised in public by Chris, wanting to know what I needed Ruben for and was my issue. I walked out of the meeting. I am not sure if that is when Scott came to visit and asked me what I wanted to make this all go away? I told him for it never to have happened. He smiled and have me a hug, apologizing again.  
New CRPS Story 2 2014-06-22

New CRPS Story 2 2014-06-22

In June, Dr. Steck decided to try a different surgery to stabilize the syndesmosis joint. So I took off from 6/14-16 and returned to work. He switched the screws and hoped it was ok. Little did we know, the pain was not just from the bone shards, and the fractures, but the RSD/CRPS was getting worse. I am not good at explaining or rating pain usually because I have always had a high tolerance to pain. Again, I went home with out any pain medications. Although, wine did become my closest friend. Many evenings I drank too much hoping to escape this whole nightmare I was living. Because my emotions were so raw and close to the surface, I fought at the drop of the hat, I pushed friends and family away, and said unimaginable and not true words to my family, regretfully, and that will never go away.  
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  The pain persisted, so Dr. Steck and I spoke in October and we decided to proceed with a total ankle replacement. We were so certain this surgery would rid me of the chronic pain we attributed to arthritic changes and bone shards. We planned the surgery for 11/3/14 one day shy of 365 days from his first open reduction.  I let Chris know in October, but as usual he barely listened to me these days, responding to texts, and emails sparingly. Suddenly on 10/28 he realized that the surgery date was coming up quickly, with another possible 6-week recovery. This time I applied for FMLA. Our Department of Health Survey was late and this caused concern for Chris. I knew we were as ready as we were going to be, and when I left this time for surgery, my department heads and nursing team were stronger than ever. I could maintain phone contact with them, and Skype as needed but they could do it. I reminded Chris he was the leader in the building and needed to lead while I was gone.  
New CRPS Story 3 2014-06-22

New CRPS Story 3 2014-06-22

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  Chris actually had Scott call me and ask me to postpone the surgery because they needed me. I felt the request was unreasonable, yet I felt responsible for my team and guilty if I left when they needed me. Scott made me feel irreplaceable. The real issue was that they knew I had filed the lawsuit, because some ambulance chaser called Chris after it was filed. If I canceled my surgery, they could state I was going against physician advice, or could have figured a way to fire me before being served, that way it was not perceived as retaliation. They did not know I knew they knew.  
New CRPS Story 9 2015-02-14

New CRPS Story 9 2015-02-14

I had surgery on 11/4 and Dr. Steck was concerned I had an infection, so he cleaned it out, removed the hardware and sent me home on basically bed rest for two weeks. He rescheduled for 11/24 and that is when the pain became so unbearable I thought I would scratch my foot off. 10/31/14 was the last day working as a nurse for me. RSD/CRPS was finally diagnosed, all of us unable to deny it anymore. I was referred to Dr. Gossler in December, and went through a series of nerve blocks between Christmas and the beginning of March, without much success. I had a trial for a spinal cord stimulator and it seemed to help the pain, if I lay in just the right spot.  
New CRPS story 6 2014-12-31

New CRPS story 6 2014-12-31

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  Also, during this time, Workers compensation wanted to verify that I needed to see Dr. Goldman, so they would cover it. They sent me to an IME (independent medical exam), and it backfired completely. She said that I was suffering from severe PTSD, the thought of walking into a nursing home or seeing Chris would be too traumatic for me- all the truth. She nailed me. And so, Dr. Goldman was approved and paid. The spinal cord stimulator was inserted on 4/6/15. It must have moved because it worked on my left leg, so on 4/10 they went back in and replaced and sutured it in better.  The pain was so bad, I wondered if the RSD had moved to the incisions on my spine, but it was just that he did a compression laminectomy while he was in there, and the insult was twice to my back. Again, I refused to take any narcotics and went off the opana I was prescribed while waiting for the stimulator insertion. Again, I suffered withdrawals, but not nearly as bad- the pain though made me feel like I was carrying an elephant when I walked. After the third straight day lying in bed, barely moving except to go to the bathroom or change positions, I started to feel better. I actually called Stephen, and he and Autumn came over immediately, putting an ice pack on the incision- why I didn’t think of it I have no idea, but it really worked. All four kids really stepped up to the plate, and for that I was so grateful.  
New CRPS Story 2015-02-08

New CRPS Story 2015-02-08

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  I also need to mention during my recovery I watched the entire 6 seasons of “Glee!” By the end of it, I thought everyone should break out in song when a crisis occurred, and that reinventing me somehow included Broadway and singing lessons! The power of pain, medication, and suggestion! Derek and Shaina got married on March 14. I was sorry I was in intense pain, but refused to not have a Mother and Son dance. IT was the most important day we shared aside from his graduation as valedictorian. Despite the injury, I was able to find a dress to hide the scars and sandals that were dressy enough to wear. And three glasses of wine in, I was able to handle the pain of swaying with my son as he left my home and cleaved with Shaina.  
New CRPS Story 2015-02-14

New CRPS Story 2015-02-14

My mother also died during this terrible ordeal. In April of 2014, we found out she had bone and lung cancer. I wanted to go home, but knew I could not physically or financially, it had taken me a year to dig out of the hole I had been in due to the lack of income. On July 2nd, Dad sent an email stating mom was being placed into in-patient hospice. I didn’t ask; I told Nick I was going to drive. He got me tickets to fly. I told Chris I was leaving for a period. I got to mom after she could not talk anymore, but I was able to say goodbye. She passed away on 7/4 early in the morning. Can you believe Chris had me take clinical call during this time? A nurse called me for some stupid and trivial need. I said, “I don’t care. My mom just died!” and hung up. I called Chris and told him I was not answering my phone and I will let him know when I will be home. He did not question me. I did have to write a report for him before the memorial service though.  
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New CRPS Story 2015-01-01

New CRPS Story 2015-01-01

  I spent the weekend before my surgery on 11/4/14 creating a power point for a presentation we were supposed to give at one of our preferred providers. It was complete with audio and visual. I completed all admissions and Matrix fixes, a Humana Audit and all his reports. He did not present; he failed to show. Instead I had to field texts, calls and emails to explain my absence but had no clue about his.
New CRPS Story 8 2015-02-14

New CRPS Story 8 2015-02-14

Mind you, after my surgery on 11/4/14 I remained on call for clinical needs. The building, Chris and PLUM were served with papers on 11/7/14. On 11/10/14 my email was dysfunctional and I was told since I was on FMLA I was unable to work. Nurses still call me today, because they do not get help.  
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  Did I mention I had to sell my house because I could not afford the payments on workers compensation? Now, I am relegated to a master bedroom in my son’s apartment, with the contents of my life contained in those four walls. And here we are. I am sitting in a Starbucks in Valdosta Georgia. I continue with the chronic pain of 1000 red ants biting my foot and ankle, or Elpheba (what I named my stimulator-after the green witch in Wicked) is up so high I vibrate painfully from my lower back to my toes.  No one can fully understand how I feel. I have lost my home, my career, my independence, my health, and the ability to control my pain and emotions. I started working out and am attempting to eat healthier. I get compliments on my age and beauty. I smile and thank them, but I do not believe it.  
New CRPS Story 2014-12-29

New CRPS Story 2014-12-29

I feel alone many days. It took me years to remove the mask of loneliness and insecurity that I wore so no one could use it against me. In the battlefield of my mind I struggle to find inner peace. We thought removing myself from the surroundings that leave me feeling empty, scarred and broken I would be able to rediscover who I am. Or who I want to be. I am not a nurse. I am not a leader; I am not the advocate I was before this ordeal- another thing taken away from me. I am no longer a home owner; an overachiever, a mom who is needed for all those things we do for our minor children; I am no longer independent; I am a burden in my own mind. I now take meds daily, when before, I never took anything. I feel old and even my self-image dipped way below the Janice Line (in MLB, the Mendoza Line is an AVB lower than .190) the Janice line is somewhere between I think I look ok and I struggle with my looks. Who could ever find me desirable with 7 new scars, one with my Elpheba on my left butt? Ugly and discolored, who is going to look at that and say, “Damn! I got to have that ass?” Seriously. Isn’t it bad enough I lost an inch of height on my right side, I can’t wear my standard two-inch heels and the only thing I knew my whole life, nursing? Who the hell am I anymore?  
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New CRPS Story 4 2014-12-29

New CRPS Story 4 2014-12-29

I attempted to and successfully passed a test to sell insurance, but I am not a sales man. I was not interested in it, but I did it. The pain is so distracting I can’t concentrate on things very long. Even writing this is taking forever. I struggle to find the words I want to say, and I have trouble remembering what I ate for breakfast, or dinner the day before.  And yet, I act as if I am ok. Why? If I was my family or my friend, I would be sick of hearing about it too. I do text my counselor while I am here, and I get help from him. CRPS has taken over my life and I am desperate for someone to give me a way out because I will not live like this forever, with pain a 42/50 on the McGill pain scale for the next 25-30 years. I will not and no one can make me. So I have decided to find the new me. I challenge myself when I work out– Tom, my personal trainer adapts my exercises to do them on one leg or without my right ankle, but that can be embarrassing when I am in a class with others. They do difficult lunges and I do leg raises. I can’t use the steps to my advantage at all. But, I can do 400 crunches in 30 minutes without giving up!  
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  So, I am still back where we started. How do I find me? I am lost and no one can tell me who I am. There has to be a way to figure it out. I guess I will keep looking.  
New CRPS Story 5 2014-12-29

New CRPS Story 5 2014-12-29

I had a vision last night when I could not sleep. It was like dreaming with my eyes open. It has never happened before.  He opened my mind and my heart to His plan for my life- not that I completely understand it or even know where He is leading me. But I saw clearly what He has in store for me. Have you ever had things just start to fall into place in your life? When the storms are swirling around you, and you start by hiding in the cleft of the rocks, before you climb under His wing and trust Him?  Once you do, it is as if you can see the rainbow and the light at the end of the tunnel. Suddenly the storm is not the focus, but His plan is. That is what my vision was like. I have friends on the East Coast, who keep inviting me to visit. So, I am going to. And that is when the vision came to me. These are friends I thought did not like me growing up. I will visit them and find out about me from their memories.  Learning about me through other people’s perspectives will help me learn to love who I am rather than loving what I have always done. I will learn to define myself by my character rather than by my roles in life. Then He reminded me I have friends across the country… I am going to Eat, Pray and Love American Style. I will keep a record of my journey and write the next best selling novel.  Show people how He can take a crazy type A woman and create a whole, loving, stopping to smell the roses woman with perspective.  
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  That is when through the storm I saw the light at the end of the tunnel. The next morning, this is what I learned: I am going home on June 11 to have probably my last IME with workers compensation, so that they can place me on permanent disability status and settle my claim. (I did retain and attorney to assist with both this and SSDI). The car will be modified and I will have my independence back by June 25th. That will be so liberating.  Mediation will be in August and I honestly believe and have faith God is providing freedom from all I feel tied to financially and legally.  He is showing me a journey of discovery. Overall Goal: Redefine Janice.  

By Janice Nargi

 

Thank You so much Janice for sharing your painful CRPS story with us! We totally understand how painful it must have been for you to write your story in such detail, but hopefully other CRPS/RSD sufferers will be able to take something from your journey in their own life.

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New Personal CRPS RSD Journey - You can do it

New CRPS Story – You can do it

  Last Updated: 16/09/2015

LET’S SPREAD AWARENESS of CRPS!  Burning Nights logo

About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Christine Fleming

    Hello Janice
    Reading your story I am amazed not just at the accident or the lack of support from Chris but at your amazing strength of character. It comes through all your writing. Yes there is something ahead for you that you will tackle with the same strength. I hope that you will keep in touch to let us know what is happening. My prayers and blessings thank for sharing your story

  2. Kathy Frankforter

    Hi Janice: Your injury is similar to what my sister dealt with. She shattered her ankle when she fell at Disneyland. I believe she went through a couple of surgeries. Here’s the coincidence – my sister worked at Bishop Hospital (billing) until her retirement a couple of years ago. She knows all the drs in Mammoth…My sister does not talk about her injury so I don’t know if she has CRPS but I do have it! It took years to finally get a diagnosis. I don’t have an exciting life. Pain medication has helped and has given me a little quality of life. It’s tough being sick and dealing with pain. Hang in there…CRPS sucks I’m 62 yrs old and had to give up my secretarial business back in 2004. Thank you for sharing your story. Sincerely, Kathy

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