Good Bye Docs!

DSCN0738

Good Bye Doctors

I am aware that the moment I decided I was going to be ok, that my bones did not magically heal. The pain did not all drain away leaving me in total bliss skipping through a field of flowers. What did happen though, was that I choose not to live in despair anymore. I still have my rough days and child temper tantrum moments. Fortunately I don’t live in those moments. So this is my story. This is my life. This is my burden and I am going to learn how to embrace it and love my life.

My secret has been to start creating a life I love. Surrendering to my limitations and honoring my bodies’ signals. I am blessed to be able to do this at this moment in time. If I were on a set schedule I could not lie down when the pain was beginning. Someday I will be working again so I try to cherish this time of rest while I have it. When I am focused on a life I love that is full of activities I love. I am no longer obsessed with my pain. When the pain was my main focus it seemed to grow exponential.

Very shortly after resigning from my job I was still having terrible pain in my left side low back that would radiate around the hip. This pain was completely different from the pain caused by the hardware on my right side lower back. The doctor had me go to a different surgeon in his office and check my SI joint. This took a series of visits and a cortisone shot administered in the hospital. Due to my post operation PTSD I had to be medicated to get me in to the hospital. A nurse held my hand and I cried like a baby while they put a needle into my back by my spine. The theory was that if the cortisone shot worked, then we would know it was the SI joint. Well the cortisone shot worked wonders. I had a few days of absolutely no pain! Unfortunately the cortisone had an undesired side effect of keeping me awake for a week. Thoughts racing in my mind I once again struggled for sleep and rest.

I met with the doctor again who said there were a few different options that could cover up the pain. Like “burning the nerves”. Nothing could be done to fix my SI joints. The most I could do, was try more procedures like shots or burning the nerves and just hope it would give me temporary relief. Each one of the procedures are extremely expensive and none were guaranteed to work. It was at this point I caved. For now I just could not do this anymore. I was so tired of being completely consumed with myself and my pain. When going to the doctors every week I would have to pay very close attention to my body and pain so I could describe it to the nurses and doctors. Living in a completely self-consumed state is not the right spiritual place for me to be. Not thinking about others, consumed with self was breeding, fear anger and resentment. YUCK

I decided to break up with ALL my doctors. I went to each one including my physical therapist and ended our relationships for now.

I told them, “I would not be coming back.” “That I needed a break and that is was not them, it was me.”

I get that one day I will need to revisit the doctors. Right now the best thing I could have done was put some distance between surgeons and myself. I still have pain but I am focused on living and not consumed by my pain. I have not had to take prescription medication and I feel so free because of that.

Emotionally and spiritually this little break has been just what I needed. I have been focusing on being happy and joyous. Three months ago I started my old exercise program. I am a girl who loves to move and sweat. Being strong and mobile are very important to me. I flop around in the back like a lost seal while the superstars move and groove in the front row at speeds of lightening inspiring the rest of us. I am at my happiest while I am at adapt fitness. Even in my “seal” like state, I am filled with gratitude to even be there! I will talk more about my physical strength and progress another day. Boot camp is a whole entry all to itself.

Feed back

imageWell I have blogged pretty much up to where I am in my life now. I’m still excited to learn more And experience more while sharing with each of you. I hope my blog so far has been helpful or insightful. There was so much left out that I intended to mention, so.  Please if you have any questions, statements, improvements I can make just leave a quick comment on the bottom of the page. I will be sure to make time and answer everyone;)

Game Changer

I am amazed at how ignorant I was to pain and people in pain. Somewhere in the back of my mind I truly believed that people who suffered with these symptoms were faking for medication. I know that sounds very judgmental. Over the last couple years I have learned so much about pain. I really never understood how exhausting pain can be. It literally touches every area of a person’s life; from confidence, mobility, and even personality. I have never enjoyed being under rested or irritable. I am a very upbeat person but I slowly have felt that slip away due to exhaustion caused by pain alone. Fascinating stuff! Pain can also be so isolating. I remember watching the sun come and go out the window of the house. Thank goodness for the friends and family who would take time to visit me? My life had come to a screaming halt, and I noticed that the rest of the people in the world just went on. While this is very humbling it was also lonely. I’ll always be grateful for the friends who came and just sat with me. With the depression that accompanied my surgeries I had no energy to even try to host or entertain. (Like talk) Looking back I realize this time was so essential for self-reflection and communication with god.

I had a few weeks off work to recover from the hardware removal surgery. It was during this time that I really started to look around at my life. I saw that everything that was most important to me had gone to hell. My family never ate together, we stopped going to church and I was missing all my daughters’ achievements. This was not ok with me. My life had gone in a direction that did not sit right with me emotionally or spiritually. One morning I was lying in quite reflection when I just up and decided that I was going to be ok. No matter what, I was going to get better and be ok. This was a real “moment” for me. I finally started having deep and meaningful prayers with god. I had been too consumed with anger to pray since my diagnosis. I started focusing on what I wanted out of life and not everything that was going wrong.

My daughter was starting kindergarten in just a month. I started looking at day care packets to choose which one my daughter would go to before school and after school. With my work schedule I would leave to work before she was out of bed. By the time I picked her up from daycare it would be time for dinner and bed.

I was exhausted from pain, from depression and from fighting to swim upstream. It felt like I had been burring my candle at both ends for so long. I wondered to myself how much money does one family need. I have always had my own job. I have never been financially dependent on anyone. I am terrified of being dependent on another. I am equally terrified of becoming a burden to my husband. I ended up not being able to commit to a daycare because I wanted to raise my daughter. I wanted to wake her up, provide a healthy meal and get her ready for school. I wanted to take her to church. I wanted to take her to cheerleading and watch her little achievements. I wanted to know the kids that she played with. I wanted to be a better mom. Again I surrendered and accepted my life as it was, as I was.

As my recovery time ran out I decided not to return to work. It felt awful like I was disappointing every one of my bosses. My bosses and coworkers had been so patient with this entire medical process. I just could not fathom returning to work while still in pain, struggling to do my job while my body healed. Hoping my coworkers understood my situation while each one of them picked up my slack. I couldn’t fathom my daughter going to a day care while I poured my energy into a career. All this down time really made me look at time differently. I had no time to people please. I could not worry about what was right for everyone else. I had to do what was right for me. I had to take care of the things that were most important to me. With that decision I quit my career of ten years. This was a difficult decision because I had a dream job with a dream crew.

I choose to focus on building my relationships with my husband and daughter. I have begun preparing healthy meals for us all to eat together. Every month I focus on doing a financial budget that I have always been too busy to stay up on. I committed to a church and volunteer at AWANAS. My husband and I were baptized in very private setting with some very special friends. Recently I started teaching my daughter her alphabet. She is now learning to read. I attend all of her extracurricular and sit the entire time feeling super blessed to even be there. I guess that has been another good thing that has come from all of this. At this time in my life I don’t have to be the best at everything. I feel so grateful to even be present and not in bed. It really has become the small things. This has become a real turning point in my life. I like to call it “game changer”! I am now closer to god than I have ever been in my entire life.

Now my hope is that I will make a full recovery over this year. While I know I can always return to electrical I have started school to find a career that I love. I am seeking a career that uses what I naturally excel at and will help others. What is most important is stabilizing my family. I have no idea if I made the right choices. I do know that I will never look back and regret the time I am spending with my loved ones.”

Hardware Removal

imageSurgery#2

After a full year of recovery I was worse off than before my first surgery. I really looked to the professionals to verify if I was ok. I was looking to each of my doctors for validation. I certainly was not a medical expert so I constantly asked them if this was a normal part of healing. I could never get a straight answer. At some point I realized that they had no idea what I was feeling. I was going to have to be my own advocate. I was not ok, damn it and I needed them to hear me.

I wish I could have found a specialist that would have considered my full diagnosis. I constantly had to remind my back surgeon that some of my pain could be coming from my hips. At work the more I moved the worse the pain got. The pain ramped up during the work week so at the end of the work week, I would be limping. When I came into the office at the end of the day each step on my right foot would send a shooting pain in my low back that was so intense it would make me want to throw up. Every evening I would end the day trying to not vomit from pain. If anyone asked me how my back was I would break into tears. This was very awkward because I worked with mostly men and not professional behavior. Not only was I embarrassed, my co-workers were very uncomfortable with it.

I came to a point where I could not walk at times. I would be stuck standing in one place for forty five minutes unable to put weight on my right leg. A panic would rise up inside of me thinking this was it, this was the last time I was going to be able to walk. I would do my best to contain the fear welling up inside me and ask my helper to do this or that while I focused on breathing. In my mind I told myself to stay calm and keep working. I cannot imagine being that poor electrical helper. He probably thought I was being such a jerk, standing there while he worked away. It took days of playing the telephone game with my doctor’s secretaries and nurses before I could get any answers. I wanted to know if I was ok. I wanted to know if not being able to walk was normal? The recovery period was supposed to be three months so what was going on? I inquired if my feet burning every day was a sign of healing? What I got was a call from a secretary telling me there was a prescription for neve medication waiting for me at the pharmacy. That was not why I called and not what I needed. The entire medical system has driven me nuts. I could write a whole blog entry on it alone.

At my scheduled checkup I voiced that I was not doing well. I told the doctor to his face how bad I was. He agreed that my symptoms were not normal. After some testing He decided to schedule a second surgery to remove the hardware. Something interesting had happened during my first surgery. I must have been traumatized by the whole experience. Now anytime I go into the hospital I start shaking and crying. I really wished someone would have mentioned trauma and depression being a possible side effect of major surgery. If you are considering major surgery I would highly recommend reading a little about this. Once again we prepped for surgery and the fear was relentless. I found it amusing how right before they would wheel me off to surgery a nurse would come in and ask me to sign a disclaimer stating that I could potentially die or wake up paralyzed! I mean really, could there not be a better time to do this.

The doctors could not confirm that this surgery would be helpful or not. They could only perform the procedure and hope for the best. The night before the surgery there are a series of items to complete off of a check list to prepare. After completing each one I laid on the bed and handed my very conservative husband a sharpie. This is probably my favorite part of this story. I then asked my husband to write, (stop looking at my butt) on my butt. He looked at me for a second and then choose to amuse me.

When I woke up after surgery the doctors and nurses were by my bed laughing about how they almost wrote a message back! We all had a good laugh about this. They informed me that they were confident they had found the source of the increased pain. One screw was sticking out and tearing up my muscles every time I moved creating scar tissue. There was a rod running right by a nerve that was also causing pain. I’ll never forget that conversation because it was the first time any doctor had used the word, “confident”. He was confident that they had found the source of my increased pain. What was happening as I moved, my muscles were being torn up by the screw causing scar tissue and more importantly inflammation? This inflammation would press on my nerve running down my right leg. That was causing my inability to walk and the pain that rivet through my right side. I was given the same medications I had prescribed my first surgery. Only this time they were making me throw up violently. No amount of anti-nausea pills helped. This would continue while at home recovering. No amount of ant nausea or tubes of crackers could help me keep my medications down. The medication also started affecting me differently. Every time I took my meds I could not sleep for hours. If I did not take my prescription the pain would keep me awake. If I took my drugs they kept me awake the entire time. I was falling behind on my rest. I was so exhausted because I had not slept in what felt like days. Out of desperation I called my doctors secretary and demanded different non-narcotic medications. The next day I started tramadol. While this did not keep the pain at bay at least I could sleep and I felt good. Who knew sleep was so valuable. It turns out if the body will not heal when in pain or exhausted.

 

 

 

Back To Work?

imageAs my family medical leave ran out I returned to work. I was confident I could work 10 hours light duty, even though my surgeon did not agree. I thought to myself, it’s just light duty. After a week of work I learned to do as my doctor said and not to argue. I assumed I was going to lose my job. I was only cleared for four hours of work. Imagine my surprise when my supervisors agreed.

After three months I could be vertical a total of five hours otherwise the pain became unbearable. I was now working four of those hours and when I counted the time to travel to and from work, each second became so valuable in my life. Imagine trying to balance a full days responsibilities into forty five minutes. I scrutinized over my priorities constantly moving them around so some of my life’s needs were met. I always tried to make mental notes of what could be done while lying down. There just was not enough time to balance, work, husband, child, home chores, and self-care (like showers). This constant hyper alertness was exhausting. I have always been a high achiever so during this entire process all that I could see was everything that I was failing to do. I felt like a burden to my family, friends and coworkers. I felt like a failure. The only thing that kept me going was the hope that it was getting better. I kept reminding myself that this was a temporary situation.

It was not getting better though and I started to lose hope. The more I moved the worse I got. Every few months I would go back to the doctor. At each visit the doctor would clear me to be vertical another hour. At that time he would also clear me for another hour of work. I physically could not do the things that were most important to me. My family, our faith, our meals, my mental and emotional state were what suffered the most. There just was not enough time.

It was during this period where I began the process of accepting my situation. This did not happen overnight. I began to realize even if we did fix my back pain I would still be spending the better part of the rest of my life in pain. I was informed that I should hold off on hip surgery because the new hips only last twenty five years. This means if I fixed my hips now I would need two more hip surgeries later in life. As I am adding this up that would mean a minimum of five major surgeries. I was advised to wait until my hips wore completely out and the pain became so unbearable that I could not walk before getting my hip surgeries. The simple truth is that I am going to be in some level of pain for a long time.

There were many days where I would curl up in a ball on the floor sobbing out loud. I would call my closest friends weeping and screaming horrified into the phone. Could this be the rest of my life? I began to understand that I could not fix this or make it go away. I was and still am completely powerless. I could clearly see how this was turning into a domino effect that would end up being the beginning of the end. A bit dramatic, I know, but these were my actual thoughts at the time. My understanding of my mortality really advanced a level at this stage in my life. Even though I knew in my mind that people died, I guess it never really hit my heart. Until now. People really do live their lives in chronic pain, become paralyzed, get sick and even die. Someday I am going to die.

This is when I really started to consider what is most important to me in my life.

Back Fusion

cropped-image1.jpeg

I don’t mean to sound like a, “Debbie Downer” but this was by far the darkest period of my experience thus far. To paint it another way would be doing a disservice to the process

As I tried to prepare for my first surgery I did a lot of my own research online. I spoke with three different specialist and reviewed the best and worst case scenarios. There was so much risk involved with everything. No one could guarantee that the surgery would help. Everything was very scary and it did not take long for the fear to snowball and completely consume me. From this point on I was full of fear, anger and resentment. I was so lost and alone that I could not even find the words to pray. Any time I thought of praying I became enraged at god. I am so grateful for my friends and loved ones who prayed for me at this time. It took at least six months before any words would come forward in my mind. All I had was hope so I decided to have the surgery.

When I came to from surgery I was in the worst pain of my entire life. I guess that was to be expected. My body did not feel like my own. If felt like I had a huge brick in my low back. I really felt grateful that my mother stayed with me the whole time in the hospital. She brushed my hair and helped me put on makeup. Even though I felt like crap I knew I looked good. This would make us giggle every time the nurses came in.

When they released me to go home the last thing the doctor said was, “eat lots of protein!”

I really wish they would have not given me that info. Once home I needed help with every little thing. I was told my recovery would be three months. It turns out at the end of three months I was then only able to be vertical four to five hours at most in an entire day.  I mostly laid for that entire time. I would get up and walk on the treadmill every so often as recommended. The rest of the time I laid and ate protein! During this three month period I gained 20 pounds. Now not only did my body feel completely different but it also looked different. I hardly recognized my own reflection looked different I even moved completely different. At this time I started to grieve my previous body.

Once medication was introduced to my body every negative thought I had magnified. My fear, anger and resentment grew. I stored up all my joy, hope and strength for when my daughter was with me. My mind felt fuzzy and I could not emotionally connect to my loved ones. I missed having feelings. I wanted to laugh with my daughter. I have always been very emotionally sensitive. In my early life that was my downfall but later in life my sensitivity became my strength. Without the ability to feel or connect to others I was a lost soul. Twice in my recovery period I stopped taking my meds completely. The pain grew out of control. It took days of medication before I could get the pain to subside. I tried to maintain my chores including time with my husband and daughter  in 4-6 hour bursts around the medication. I would have lost my mind if it was not for a small army of women who would routinely visit me. When they came they would speak positive comments and encourage me. My family rallied around me the entire time as well but I could see how hard it was for them. They all believed in me and I did not want to let them down. I wanted to be positive, hopeful confidant and strong in my faith.  I just did not feel any of that. I used everything I had to just “hold it together”.