July 2019

Something between the months of July and August of 2019 changed. As I was grieving the loss of myself and struggling with accepting that this disease was winning, my mind began spiraling down. I’ve written before how I have hit rock bottom. Little did I know I could pass rock bottom and go further down. After months of deny, deny, deny I had lost ALL hope. Nothing in this entire process has gone my way. (Not to sound whiny, but seriously, anytime I’d get good news, something would always come in and wash it away.)

At this point, I felt as if a large brick had been chained to my foot and I’d somehow been thrown overboard. I slowly passed the rock bottom I had hit earlier in my journey and was sinking even further down. I was trying with all my might to swim up, but my strength was gone. The pain I was experiencing was still there, the hope I once had was gone, and I couldn’t rely on the powers that be to help. I was stuck; chained to the bottom of the sea. Stuck trying to change my mindset, trying to believe “they” wanted to help me, but that did not seem to be the truth. What appeared to be true was every decision made came down to money and what was best for the bottom line, not what was best for me as a human being.

Needless to say, I was getting scared. Scared of my dark thoughts, scared of what I might do, and scared that I may never EVER get the care I needed. No matter how hard those on my side worked, no matter how hard I tried to keep up with all my therapies and tools in my pain “tool kit,” this disease was taking a toll on my mental stability. The lack of hope and increased pain caused me to slowly gravitate downward.

I finally decided (with the help of my own medical team) I needed to be honest with my treating CRPS doctor. I knew it wouldn’t be easy to admit, but I had to let him know how I was feeling. Not that I believed it would do anything, but he needed to know what types of thoughts I was having and how the CRPS pain was wreaking havoc on my mental health. So I called and was asked to come in right away. (WOW that was something positive!) I wasn’t looking forward to the conversation because my treating doctor wasn’t a psychologist, but I knew he needed to know, whether he listened to me or not. I dragged myself to the appointment praying for God to give me strength and the courage I needed to be open and honest.

When the doctor called me in, I was already in tears. I took one look at him and vomited out everything about how I was feeling and how scared I was about what my head was telling me to do. How the pain wasn’t getting any better, and how I’d been without any type of treatment for almost a year. The doctor gave me exactly what I needed that day; he listened. He didn’t speak, he processed everything I said. For once, I felt heard.

The saddest part of this story is it took me spiraling to the darkest moments, and being completely honest about them, to get anything to change in my treatment plan. The minute I finished vomiting everything out, he immediately wrote me a script for pain management, physical therapy and pain psychology. Immediately. Did you hear that?  IMMEDIATELY!!!  Did that make me hopeful?  NO. The powers that be had to approve it, and I was confident that wouldn’t happen. (See the Deny, Deny. Deny post.)

Unfortunately, I was right; the orders were not approved. My team had to fight for everything recommended by the doctor. It is hard to believe that a health care provider cared about my mental state enough to recommend necessary treatments; however, they were denied by the powers that be as quickly as they were written. It is a hard pill to swallow that people are making decisions that are detrimental to my physical and mental well-being based on a dollar sign.

As I’ve written before, I miss my old happy self. It’s gone. I’m having difficulty finding any ounce of that left in me. This entire process has taken it all out of me. I’m exhausted, I’m hurting, and I’m tired of fighting the system. It seems that the fight they continue with me is in hopes that I will give up and move on. Giving up is where I was at that time. With each passing day I got worse and worse and struggled to find the will to live. (Of course, I wanted to be here for my wonderful children, husband and family and that’s what kept me going.) This entire process has left me empty and in pain. Not only physically but mentally. I wish this disease and process on NO ONE, not even the powers that be.

Although it took some time, the treatments were approved. Despite the good news, I still had to wait for them to find doctors to treat me and appointments to be set. Waiting has always been hard for me. It’s been especially hard through this journey because I’m not the one in control. All I could do is sit back and wait. Would I finally be given the right type of treatment? I didn’t know.

The one thing I did know for sure is during the course of this journey I’ve lost friends. I’ve lost the old me as a teacher and runner. I’ve lost the happy, laughing, glass half full mindset. And I’ve lost all my will to continue fighting. Anyone with chronic pain will understand that. It’s just what comes along with having chronic pain. It’s not cancer. It’s not heart disease. It’s not a brain injury. It’s not an acute situation. It’s on-going relentless pain called CRPS. It’s hard for people to understand. Mostly because they don’t see it or don’t understand why I can’t just get over it. After 6 months, most people in your life walk away. Let alone after 4 years. I’m one of the lucky ones who have family and family friends who have been there for me. Many others have no one.

For those of you dealing with chronic pain. I see you. I hear you. I believe you. You and your treatment of your illness are important. I do hope and pray every day that I can rise above this. It’s going to take time and patience and support from treating physicians who care and can empathize with me. Right now I’m caught in a system that only makes my pain worse. My hope is that one day I will have some quality of life again, and I can help transform the system that changed my world.

Nurses. We’ve been hearing a lot about them these days. Their sacrifices, bravery. In my opinion, they just don’t get the accolades let alone the money they deserve. Honestly, before May 17, 2016 I hardly ever thought about them. In my defense, I’d never needed many doctors/nurses before that day. But on May 17th, 2016 that all changed. 

Throughout the last (almost) 4 years I’ve seen an endless number of doctors. More doctors than I’d seen in the first 47 years of my life. And while some of those doctors were wonderful, what I remember the most about my appointments (aside from the anxiety I had before and after every single one of them) were the nurses. They were the ones who were truly taking care of me. Here are just a few things I remember.

I remember:

• the nurses who spoke kindly to assure me the doctor would find out what was wrong.
• the nurses who repeatedly wiped tears from my eyes because of my pain or because of the anxiety I was feeling.
• the nurses who held my hand reassuring and comforting me before a procedure or at an appointment.
• the nurses who cried alongside me before surgery.
• the nurses who went to extreme measures to remind doctors of my allergies.
• the nurse who reread my charts and notified the doctor he had written down the wrong body part to operate on.
• the nurse who brought in an entire medical team to sternly remind them not to use certain topical anesthetics.
• the nurse who put sticky notes all over my body to remind the health professionals of my allergies before a surgery.
• the nurses who explained in layman’s terms what the doctor really meant.
• the nurses who were there for me when I woke up after surgery – again holding my hand and speaking kindly to me.
• the nurse who prayed for me.
• the nurse who stayed late just so she could be there when I woke up.
• the nurses who believed me when I felt like doctors didn’t.
• the nurses who risked their lives coming to work in a hospital when the yearly flu was rapidly spreading.
• the nurses who called to check up on me after surgeries or appointments.
• the nurses who would encourage me not to give up.
• the nurses who sat and listened while I told my whole story so they could see the big picture.
• the nurses who didn’t leave my side while tears were streaming down my face.
• the nurses who researched CRPS to help their doctors have a better understanding of how to treat it.
• the nurses who looked directly into my eyes and said, “I am here for you.”

Throughout these last 4 years, these are the people I remember. These are the men and women who know their patients far better than the treating doctor. The men and women who went into a field that is not only high stress, but fast paced, risky. Thank God for nurses everywhere. Thank God for the students who are continuing their nursing degrees so they can be on the front line or helping people like me – just a girl trying to beat CRPS.

Finally, thank you to all the nurses out there who fight for their patients everyday and who are on the front lines of this awful pandemic. I see you!! I applaud you!! I pray for you!!

As you know, Steve and I made the decision in May of 2019 for me to resign from my position as BIST Consultant. The company was gracious enough to give me an opportunity to try working part time; however, my pain level did not cooperate.  This decision was based on my increased pain level, the low quality of life once home from work every day, and my mental mindset.  I was plagued with grief from losing my old self. Not to mention, I hadn’t been offered any type of treatment since the middle of 2018.  Tramadol was supposed to be the cure all. Guess what? It wasn’t.

At the end of October 2018, the orthopedic doctor I was seeing referred me to a pain management doctor. As usual, I waited and waited and waited for approval. FINALLY, a pain management doctor was approved. Could this be what I’d been waiting for to help me feel better? HA! Nothing has ever been that easy in this journey.  While the doctor wholeheartedly agreed I had CRPS, he wasn’t sure how to treat it, so he sent me off with Tramadol. He said, “Now if you do some research and find proven treatments, fax me the information and I will request it for you.”  SAY WHAT? Isn’t that what this doctor was supposed to be doing? (Suggesting treatments to help me manage my pain or get rid of it?) I cried all the way home thinking I want my old life back. I can’t do this anymore.

While working full-time as a BIST consultant that year, I would spend the little time I had feeling ok, researching, asking questions on message boards, and contacting a CRPS website called rsdsa – supporting the CRPS community. When I’d read a medical journal with credible resources, I would print and put in a file. As surprising as it sounds, there are some things that can be done in the medical community to help patients who are suffering from CRPS. They aren’t cure-alls, but the research shows they’ve helped other patients manage their pain. Once I felt I had enough “reliable” research and data, I would fax the treatment information to the doctor. He would then write a referral to the powers that be and then we’d wait. WAIT, WAIT, WAIT…

Still we’d wait, wait, wait… I would call frequently to see if the doctor had heard anything, but the answer was always, “Nothing yet.”  Eventually, I would get a phone call from the doctor saying the treatment wasn’t approved; it was DENIED. So, I’d go back to my research and fax another type of treatment. And again, I’d wait and wait, and finally get the phone call it wasn’t approved; it was DENIED. I know I’ve said this before, but I truly believe I should have my Google medical license.  : – {   The words DENY, DENY, DENY reverberated through my mind. Again, this went on for at least 10 months. I was losing hope quickly. Trying to work while in pain and being a researcher and doctor was proving to be far too much.

It was at this time, I really started grieving the loss of myself. I’d tried to go back to work. I’d tried getting the help and treatment I needed for my pain. I did everything I knew to do to help manage my pain, but I failed. I failed. I failed to keep the strength I knew I needed to get by every day. I failed to stay hopeful about my pain magically disappearing. I failed at believing my situation would get better. FAIL, FAIL, FAIL. There was nothing else for me to do. That’s when I starting thinking about the old Stephanie.  The old Stephanie would have continued fighting, would have been positive, would have known she could get through anything, and would have had the strength to make it through this time of denial and failure. The old Stephanie had dreams and goals.

But I wasn’t the old Stephanie. I was the new Stephanie who lived with excruciating CRPS pain and who had a large amount of limitations. I was weak, tired, confused. I had only one dream and that was to be pain free! I was the new Stephanie who didn’t have any medical team to help deal with the pain. Although I continued doing everything I knew to do from praying to physical therapy to mindfulness to ibuprofen and Tramadol, the pain just wasn’t subsiding. It had been a little over 3 years since my fall, and I was still dealing with the repercussions of playing a game of kickball. I honestly felt I was living in a nightmare that just kept repeating itself over and over and over again.

Then something happened. In July 2019, something changed. For the life of me, I still can’t believe it took something so simple to get people to want to listen. The problem was although they may have listened, would they follow through with what needed to be done? Or would it be DENY, DENY, DENY all over again? If you’ve kept up with my journey, my guess is you may already know the answer.

I began my new position as a BIST Consultant in July 2018. I knew all the physical therapy, encouragement from a few friends and family as well as the wisdom from Dr. Lemons was going to be put to good use. During the month of June I worked to get stronger and stronger and eventually was able to stop wearing my horrendous looking boot. This was a positive, as I didn’t want to start my new position making the grotesque fashion statement.  Trust me when I say this, there is nothing fashionable about a two year old gray boot. To say I was excited to be back working and to be a part of an amazing team would be an understatement.

Honestly, there were so many feelings gushing through my brain when I thought about working again. It was like the flood gates had opened, and dirt and debris where filling my body. I knew I would need to find my new “working” normal, but that was REALLY scary. All I’ve ever known was go, go, go, go, go, go, go and then start all over again. My new body wouldn’t allow me to do that, so I had to figure out what I would be able to do. Dare I say, my mind went there?  The dirt and debris washed over me and sent my mindset into oblivion.  Thoughts of “how on earth will I be able to do this,” and “what if it doesn’t work,” and “what if I fail,” and “what if I’m not capable,” coerced through my mind. As we all know, this isn’t the first time I’ve thought “what if.”

One of the nice things about this new position was I started out part time and had an amazing boss. This would give my body time to adjust and see if and how I could manage my pain level and eventually work 5 days a week. CRPS doesn’t just go away, so I had to keep that in mind. I knew I’d have limitations that others didn’t, but I was determined to make this work.

From June to October, I continued having appointments with the plastic surgeon who removed 1 of my nerves in my ankle. As always, he’d tell me, “Your ankle looks fabulous and you shouldn’t have any pain because I removed a nerve.”  Yet again, I was reminded how little doctors knew about my condition. The anxiety of each of these appointment made my pain increase. Finally, he released me and referred me back to my orthopedic doctor. Are you kidding me? I knew what was happening…they were just passing me back and forth between each other because none of them really knew what to do to help me.

The orthopedic doctor took a look at my ankle and gasped. He was shocked at how thin my skin was and pointed out how he could actually see my tendons through my skin. Apparently, the plastic surgeon had given me far too many cortisone shots to make my ankle look “fabulous.” This, however, was not good for me. I told him all about my symptoms which were exactly the same as the year before when I saw him. He then prescribed an ointment for me to try. As if this “magic ointment” that I’ve tried before was going to work.  It didn’t.

I continued to see the orthopedic doctor every six weeks until he finally referred me to a pain management doctor – AGAIN. He reminded me how he doesn’t treat patients with CRPS, so he thought it would be best to see someone else. In my mind, that was 12 weeks of wasted time. Twelve weeks of pain with no one worried about trying to help me manage it.

By this time it was starting to get really cold outside. Can you say the coldest winter EVER???  My daily pain levels were increasing. Tramadol, Ibuprofen and Tylenol just weren’t helping me at all. I did my best at putting a happy face on each and every day while working. Then I’d cry all the way home with the heat pad on my foot until I could take pain medicine. I spent most evenings lying in bed, in the dark, praying for the pain to go away. It took me awhile to realize working 5 days in a row was taking its toll on me. My incredible boss was understanding and so helpful during this time. I missed a lot of work and was thankful for all the snow days.

I continued fighting, trying to figure out how to manage my pain with the tools I’d been given, but nothing seemed to help. The referral to a pain management doctor hadn’t been approved, so I was feeling very discouraged. It seemed as if the feelings of my life falling into place were now changing to my life falling out of place. Not one part of this journey has made any sense to me. I knew I had CRPS. I knew I had to figure out how to live with this chronic condition. Knowing those two things made me grieve for my old self.  A grief that wouldn’t go away. I yearned for my old, happy, teaching, pain free self.  Would that ever come back?  Would I ever be the same as I was before I played that stupid game of kickball?

The month of June quickly arrived and with it came even more hope, a trust that God would continue helping me through. My climb was making me stronger and stronger both mentally and physically. Although I may not have felt that way every day, I was having more days with that strong feeling. More days of getting out of the house and working on being myself. Quite honestly, this month reminded me of a quote I read in the book Sh*t Happens so Get Over It. (Thank you, Myrna!) Beverly Solomon says, “When life looks like it’s falling apart, it may just be falling in place.” For two years and one month, I never once had this thought, but something changed in the month of June. Something HUGE!

My mind was starting to fully accept the pain I still had. The burning inferno feeling that once plagued my left side was now more like a candle. (Anyone else just start singing Candle in the Wind?) Lightly burning while flickering every now and then to remind me the burning wasn’t totally gone. But it was tolerable. That, my friends, was huge. There were still things that brought on a higher level of burning, but I managed those as best I could.  If this journey has taught me anything, it’s how to read my body and know when to stop, take a break, and breath.

In spite of the dulled burning, I was still experiencing the ice cold to the bone pain in my foot/ankle. It just wasn’t letting up. The nerves in my foot were still sending my brain a signal of pain. As I began weaning out of my boot, the pain increased. This, of course, was partly due to muscle atrophy. My left leg/calf hadn’t had much exercise for two years. It wasn’t attractive and my calf felt like a candle in the wind blowing back and forth as I walked. Seriously, though. It was evident I hadn’t done anything for quite a while. The heating pad continued to be my best friend, along with a lot of ibuprofen and Tylenol. There were times I had to take a pain pill to relieve the pain. I did what I knew to do for physical therapy to strengthen my ankle, calf and leg. Once again, I was reminded it takes time to build back muscle and strength. Nevertheless, I had to see this all as progress. After all, I was feeling better than before my surgery at the end of March.

My next doctor’s appointment went as all appointments before. My scar looked amazing. (I bet you I’ll be a foot model by the time this is all over. UGH!) The doctor did, however, give me a series of cortisone shots in my ankle to help the scar tissue. The plan was for me to come back every six weeks for more cortisone shots. Believe it or not, the cortisone shot gave me just a little bit of relief for a week or so. (I’ll take that any day!)

As the month of June moved forward, I was feeling more and more positive, hopeful, and accepting of my pain. I updated my LinkedIn profile to include writer/blogger as I was feeling like I wanted to start looking for a purpose. A purpose other than wife, mother, daughter, sister, friend. The CRPS may never fully go away, but I was feeling better than a year ago, so that’s something. A few weeks into June, I received an e-mail that literally changed my life. Someone I’ve known for years had contacted me through LinkedIn and wanted to speak to me. ME! I didn’t know what about, but it was exciting to get a message. My first thought was she wanted to say hello.  BUT…it was more than that. She wanted me to consider a job opportunity with her company. Say what???? The last two years of my life looked like it was falling apart, when actually God was just making it fall into place.

After a few interviews, I was offered a position as a BIST Consultant. Was this what God has had in the works for me for the past two years? Something deep down in my heart said YES! It is what God had in mind. It would be perfect. Years before I had spoken to her about this, but I was teaching and still had a lot to learn. Now, was just perfect timing. Although, I would have to learn how to manage my pain while working, I knew I was stronger now than ever before to handle it. For the first time in two years and two months, I felt my life was falling into place. And what an amazing feeling that was. Now I had one month to work on getting stronger physically so I could start my new position in July. (It feels amazing to say that!) My plan was to do everything in my power to let my pain know I was in charge. My invisible illness (CRPS) wasn’t going to win this time, at least I hoped not!

 

Although the months of March and April were filled with sadness and silence, the month of May brought me a realization that this wasn’t my forever. (Thanks to good friends for reminding me of that one!) The words I started living by helped give me the strength to begin and continue my climb out of the ruins I had fallen deep into. Come to think of it, my entire journey has been about me climbing up out of my situation. Miley Cyrus sings one of my all-time favorite inspirational songs, The Climb. She says it all when she sings, “It’s all about the climb!” I knew deep down I was learning from my almost TWO year journey. Each and every day I was learning. But my mind was distorted trying to get to the end and not wanting to focus on what I was learning throughout the climb. Trust me when I say this, the voice inside my head often said I’d never get there.

But things change. Sometimes for the worst. Sometimes for the better. The climb is truly what it’s all about. I had slid to rock bottom by the end of April, but I was adamant about climbing out of it before the end of May! I had to. The month of May was going to be filed with excitement and hope. My son was graduating from college and my daughter from high school. I was overwhelmed with mom pride. That definitely helped me on the climb out. Although my faith was a little shaky the months before, I knew I had to keep trying. I had to find the strength. The physical and mental strength I once had.

As the month of May rushed by, I worked hard physically and mentally. Even though I was still in my boot, I was accepting of it more and more. After all, at least I didn’t have to be on crutches anymore. (See, I was trying to be positive.) I meditated, used mindfulness, and stayed as relaxed as I could. I continued with desensitizing methods, physical therapy and sensory therapy. Despite still being in pain, I turned the frustration about my situation into exciting talks about upcoming events. My attention turned to the words “it’s not about how fast I get there.” I was in a hurry to be pain free, but my babies were growing up, and I was definitely not in a hurry for that. I didn’t want to miss any part of this excitement.

My next doctor’s appointment went just as others had before. “Wow, your scar looks great! Look how good it is healing.” The doctor, once again, went on and on about how my ankle looked so good! When would it sink into his head that I DIDN’T CARE ABOUT WHAT IT LOOKED LIKE! I just wanted the pain to go away. He reminded me that he removed a nerve, so I shouldn’t have pain. I again reminded him that there is more than one nerve in an ankle/foot. (I really should be an MD by now, right?!) He asked me to be patient. OMG….REALLY. I’m tired of being patient! The nurse then told me that nerve regeneration can cause serious pain for quite a while. WHAT? Then why was the doctor telling me I shouldn’t have any pain? The struggle with communication was starting to knock me down.  BUT…I wasn’t about to break. Remember, I had a renewed sense of faith, hope and strength.

And so I went home, put my big girl panties on and went straight to the pool. That was the one positive about the appointment. The doctor had given me permission to start pool therapy. WOOHOO I knew getting in the pool would help relieve some of my adrenaline, which in turn, would help me physically and mentally. After that appointment, I took every opportunity I had to get in the pool. It wasn’t running, walking, or yoga, but it was something. It was just what I needed to help me climb even closer to the top of the ruins.

Good news alert…by the middle of May, the severe burning I had been experiencing had started to dull. It had settled mostly in my ankle and was no longer spreading all the way up my left side. I silently enjoyed it as I didn’t want to jinx anything. The sensitivity to touch was also getting better. For the first time in almost two years, someone could touch my ankle/foot without me wanting to scream and lash out at them. This was great because it helped me sleep better. Despite the dulled burning and sensitivity, I still had the ice cold, deep ache to the bone pain. And I was still in my boot. My new mantra about strength kicked in here. I hung onto the positives. I could now get in the pool. The burning had dulled. My ankle wasn’t as sensitive. I was still alive. All the more reason to continue my climb upward. I had to keep pushing forward.

By the end of May, I was inching closer to the top of the ruins. (No more struggle bus for me.) My kids had graduated. I made it through having to wear my boot with a dress. (It wasn’t at all attractive!)  Although I still had some very high pain days, I tried with all my might to focus on the low pain days. My mindset was slowly changing. I’d have to eat crow if I said that removing my nerve helped the burning, but I honestly think it did. (Crow doesn’t taste very good!) I still had a lot of climbing to do, but I felt I was on the right track to get there. Ms. Cyrus sings, “There’s always going to be another mountain” and an “uphill battle” to face. I was now more equipped than ever to continue my climb to the other side. Although my pain wasn’t totally gone, I was now more hopeful than ever.

 

 

The weeks following my surgery slowly trickled by. At this point, the one thing I was certain of was I still had pain. No matter what the doctor said or what procedure he had done, I knew I was the one hurting each and every day. As hours turned into days and days into weeks, I started noticing something. Something was blatantly different. I was different. My thinking was different.

I guess I’d gotten to the point in my journey were I started feeling weak. I was exhausted both physically and mentally. I felt I no longer had the strength to continue fighting the doctors, the pain, and the loss of myself. My pity parties were lasting longer. My tears were unending. My hope was dwindling. I was sinking. Sinking into that dark place I never wanted to visit again. For the first time in my life, I felt like I’d hit rock bottom.

And that’s when my a-ha moment happened. It was like the wind in my sail had been totally silenced. I was giving up. It made having pity parties so much easier. I’d lost the strength to continue fighting the pain day in and day out. I’d lost the strength to deal with arrogant doctors who pretended my pain wasn’t really there. My self-esteem was gone. Like a bird flying south. GONE! My daily talks with God went from prayers of healing to prayers for Him to take me home. In my mind, being home meant I wouldn’t have pain, and my family wouldn’t have to worry about me anymore.

During this time, I became silent. A recluse even more than usual. I was mad because I was going to have to use my crutches for 5 weeks. I was mad because I would then have to wear a boot for over 8 weeks. Nothing, nothing at all, had gone as planned, and I was beyond frustrated. (Pity party at its finest!) My attitude was getting the best of me and that led me to losing hope. I just wanted to be done. Done with doctor’s appointments, done with doctors, done with medicine, done with people judging, done with pain. DONE. DONE. DONE.

While at rock bottom, I realized the only way out was up. If the doctors couldn’t help me, I needed to do something to help myself? As most chronic pain patients will tell you, it’s exhausting talking to doctors when they have absolutely no idea of what you are going through. It’s frustrating when they don’t believe you or know anything about your illness. It’s disheartening how they can make you feel like a freak and how they attribute your pain to being anxious or overwhelmed. I’d experienced this for two years now, and my patience was immensely thin. My sadness was deep. I honestly didn’t know how I was going to continue fighting this fight. But I knew I needed to move upward.

Thankfully, God didn’t answer my prayers. As I awoke each morning, I began realizing He wanted me here. His plans for me were bigger than me. I had to do something to start rising from the bottom. Although I couldn’t change the circumstances I was in, I could change the way I looked at them. With the help of God, friends and family, I worked on changing my mindset. I worked on climbing out of the ruins of my journey. It wasn’t easy or quick, but any movement at all was something. With that being said, the depression I had was real. Even with a changed mindset, it didn’t just go away. Depression and pain go hand in hand. Fighting pain every day is depressing. Dealing with everything that goes along with pain is depressing.

It’s not that I wanted to give up, I just wanted to feel better. Move on with my life. I needed something to help me feel strong, and confident. I’d lost myself, but I didn’t want to lose myself to pain! I made the decision that the pain wasn’t going to win. I needed to find the strength to fight. Fight with every fiber of my being. As I began climbing out of the ruins, I started talking more to family and friends. I was honest. I told them of my thoughts, struggles, and how scared I really was. Simply sharing this was incredibly helpful and started giving me hope. HOPE! Hope for renewed strength and courage to fight the pain and everything that goes along with it. CRPS sucks. So do all other visible and invisible illnesses that others fight to overcome every day.

Words I began to live by: I am a fighter! I am more courageous than I think! I am not my pain! Pain does not have me! And finally, just so you know, I am strong. Strong, strong, strong, strong, strong! I clung onto these words and worked on strengthening my mind and body. Although my pain wasn’t gone, I was back to managing it better. Just as my journey had proven time and time again, climbing up out of the ruins can only make me stronger, right?

Here’s a video of my reminding myself I am strong! At least that’s what my socks say. LOL

My “journey” was starting to feel like Howard Jones’ song called No One is to Blame. I know I have what it takes to get through this, but each time I believe it may be coming to an end, I get stuck and can’t seem to make it there.  Jones sings, “You can see the summit, but you can’t reach it.”  Before surgery, I was hopeful it was going to be what I needed to be healed.  I soon found out I was nowhere near reaching that summit, the end of my pain journey. Although I was reaching with all my might, it just wasn’t happening.  Sometimes things just don’t go the way you plan and there’s really no one to blame. This process has proven that time and time again.

After surgery, I awoke from my medically induced slumber to a nurse calling my name and telling me where I was. Thankfully, it was in a recovery room where I had the surgery. The good news was the anesthetic had worked.  It kept me sleeping through the entire process.  (That’s the way it usually works, but you know how things work for me. HA) I had no recollection of the doubt that was going through my mind before the procedure.  It had went away. Although I wasn’t anywhere near coherent, they released me and wheeled me to the car.  Obviously, those who work in outpatient surgery aren’t allowed to be “patient” and wait on their patients to fully escape the effects of anesthesia.

Anesthetic really kicks my tail as I didn’t become fully coherent until 5:00 that evening.  I knew immediately something wasn’t right.  My ankle was fully wrapped, my pain level was high, and I noticed my crutches leaning against the wall. WHAT? If you remember, this was supposed to be a simple procedure with one small incision, and I was supposed to be able to walk out with a boot. Once again Jones’ song came to mind. It was becoming clear to me the surgery hadn’t gone as planned and the aspirations of being healed were quickly going down the drain.

Turns out the bad news about the surgery was the surgeon had to cut into more of my ankle than he expected. In fact, he cut into my entire tendon repair scar to remove part of my sural nerve and untangled another group of nerves.  This meant, I wouldn’t be walking or wearing a boot anytime soon. I was back to building a relationship with my crutches. MY CRUTCHES! The doubt and concern I had before were proving to be accurate. I wanted so badly for this to be the last piece of my puzzle, but it wasn’t proving to fit. Once I processed this new information, my emotions started churning. I was mad, angry, sad, frustrated, and beyond emotional.  How could this be happening? I began thinking, “WHY ME?” Why don’t things ever work out for me?  This would be the third time with my crutches, and I wasn’t anywhere near happy about that!  The pity party came on rather quickly, and it didn’t include anyone else, any cold beverages or balloons. It was just me, myself and I!

I spent the next week with my foot propped, being waited on, and taking pain pills. I was still hurting. The burning and aching pain were still there plus, I now had acute pain.  It was like I signed up to add another pain dimension to my situation.  The first week after surgery crept by slowly. I continued using the pain management techniques I learned at The Lemon Center.  I tried abundantly hard to stay positive amid my anger, frustration, and pity partying. How could it be possible that I was back in the same position as I was almost a year ago?

The first week didn’t prove to be any different than the first week after other surgeries. My pain was high and my incision was still bleeding. Of course it was! (Sarcasm)  Steve took me to see the surgeon to make sure everything was fine.  Are you sitting down?  The surgeon simply stated, “Your scar looks amazing.  You shouldn’t feel any pain at all because I removed a nerve.” COME ON!!  WAS HE SERIOUS??? There’s more than 1 nerve in a foot. Jones’ words of, “The doctor says you’re cured, but you still feel the pain” reverberated through my head. Why was it so hard for doctors to believe I was hurting?  The next thing he said was I needed to start taking valium! You heard it right. After 6 weeks of learning to relax and being more relaxed than I’ve ever been, he had the nerve to tell me to take a relaxation pill.  This was not an anxiety issue.  This was an acute and chronic pain issue.

Once again, I went home with doubt and confusion in my mind. After two years of living in pain, I knew what I had to do.  I had to refocus my mind. Although my anger and extreme sadness had taken over, I knew if I let it, it would consume me.  I reminded myself to take one minute at a time. To breath. To lean on God because I knew He would help get me through this.  However, I didn’t know it was going to get harder.  I thought I had been through the hardest part of my journey already.  Unfortunately, that didn’t prove to be true.

My decision to have surgery had been made.  Although, I really wasn’t planning on having it within 24 hours! Funny thing is, I’ve known that about plans all my life. They change. All the time. Not sure why I was so shocked about it this time. I spent the night before surgery physically and mentally preparing. Leaning on God for strength and praying for wisdom and accuracy of the doctor. Thankfully, God blessed me with strength that morning because it ended up being a morning of confusion and doubt.

By the time we left for surgery, my emotions had taken over. I was scared. I was nervous. I was afraid. And, quite frankly, I was angry because I was still dealing with this after almost 2 years! When would I ever be able to say I don’t hurt? Maybe this surgery was just what I needed to get rid of the pain and be myself again? After checking in, the prepping process began. At that very moment, the confusion and doubt started setting in. The doctor and staff were confused, and I had serious doubt on my part.

Thankfully, God gave me an amazing nurse to help me through the confusion. (Thank you, Jesus!) Her name was Stephanie. Such an awesome name. The doctor’s notes said he was operating on my left calf to remove a nerve. (Ummm…I don’t think so!) His note also DID NOT mention any of my topical allergies. I’m allergic to every antiseptic there is. EVERY ONE OF THEM! The nurse wiped my wrist down and inserted the IV before I knew she didn’t have my allergy list. When I smelled the alcohol, I immediately asked her if she had my medical history. Apparently, she had what the doctor gave her. Lucky me, it didn’t have any correct information. (Sense the sarcasm?) As far as I’m concerned, nurses do not get the credit or money they deserve. Without this special lady, I would have had surgery on my calf and would have had a rash over my entire leg! She even knew what CRPS was! Score!

Doubt started filling my mind. Why wouldn’t it? I mean, seriously, if the plastic surgeon was going to cut me open in the wrong spot, I would prefer him to do it somewhere else!  HA. This incredible nurse brought in the doctor, the anesthesiologist, their entire surgery team, and some sort of office manager. While in the small (I was feeling really claustrophobic!) curtained room, she sternly went over my allergies with ALL of them. She placed Post it Notes all over my body and my charts. She had the doctor look over the note about surgery of my calf and got clarification. He said something like, “Oops, I meant the ankle. I just saw her yesterday.” My doubt was increasing. Maybe I wasn’t supposed to be having this surgery so quickly.

I started feeling a sense of relief when the doctor put his initials on my ankle, and the team developed a plan for me. (I guess they call me high maintenance for a reason!!) As I was being wheeled off to the surgery room, there was still a little bit of doubt in my mind. Was the medical staff going to be confused about my situation? Was the surgery and recovery going to go as planned? The next thing I knew, I was being put under for the surgery to begin. I know I don’t remember anything during the surgery, but at least I wasn’t hurting or doubting anymore. However, when I woke up, I was once again reminded about plans and how they change. All the time. Now I was the one confused. And it wasn’t because of the anesthetic! (Well, maybe just a little bit.)

Someone once said to me, “Don’t let your emotions make your decisions.”  At the time, that saying made perfect sense to me.  If I was scared or afraid of something, I realized that fear shouldn’t necessarily hold me back from taking a chance or making a decision. During the two years leading up to now, I had only been able to make a few decisions about my care.  Nonetheless, each decision took a lot of thought and research. It was my health and well-being I was deciding about, after all.  That meant I needed to be certain and confident of what I was deciding. Unfortunately, these last few years have been an emotional roller coaster for me. Because of that, I was very meticulous about these decisions.

Once the new doctor told us he could remove the nerve neuroma with no problems, I had to decide if I wanted to have the surgery done.  Supposedly, this surgery wouldn’t be as invasive as my tendon repair surgery.  In fact, the doctor said he wouldn’t need to cut into much of my old incision and that I would probably be walking out of surgery wearing a boot. (Now that’s my kind of surgery!)  Everything he said sounded great.  I still had A LOT of concern about him cutting into my CRPS foot/ankle as any surgery could cause the pain to spread to other parts of my body.  That frightened me.  But…he was very confident it would be a simple surgery and easy recovery.

Steve and I agreed that going ahead with the surgery was what I needed to do.  Although my emotions were telling me no, (because I was scared and nervous) we felt it would be best for me to try it.  Immediately after meeting with the doctor, we met with the surgery coordinator.  Here’s where the next lemon comes into play.  She was getting off the phone as we walked into her office.  After sitting down, she explained to us the person on the phone was calling to cancel his surgery for the next day.  She asked if I wanted that appointment and said the next available opening was in two and a half weeks.  HOLY COW! That’s quick.  How could I make a decision like this that fast?  My heart started racing, the burning in my foot started spreading up my leg, and my palms started sweating.  My emotions were telling me no, don’t do it.  That’s too fast.  My mind and Steve were telling me just get it over with.

Steve looked at me, we talked, and then we told her I’d take it.  WHAT?? When I agreed to the surgery, I thought I’d have at least a few days to process the decision and mentally prepare.  With hesitation, I agreed to take the opening as I realized nothing had ever gotten approved that fast. NOTHING! There was no way surgery would happen tomorrow.  No way! There were only 1½ hours left in the working day, and it had to be approved by the day’s end.  (I actually laughed quietly to myself and started to relax a bit.) We left the office and headed home.

Within 15 minutes of us leaving the office, I received a phone call.  Did you read that???  15 minutes.  The surgery had been approved, and I was scheduled to go in the next day at 9:30 am.  Once again, I was speechless.  SHOCKED, really.  How could I be mentally ready for this?  My emotions were saying no, no, no.  I kept telling myself to relax, just relax.  Breath in, breath out. It took the entire car ride home from Kansas for me to accept that this was really happening.  Once home, I was able to start processing the fact I was going to have another surgery.  Surgery in less than 24 hours.

Ultimately, I guess it was good I didn’t let my emotions make the decision.  I knew if I didn’t at least try this, I would always be questioning the choice I made.  However, after surgery, I didn’t feel the same way.  It’s sad how those of you reading my blog could probably figure out things didn’t go as planned.  Nothing could be that easy, right?