Most of the blog entries I have written were stories about my life. The entries covered the events, adversities, and obstacles that I faced throughout my journey. In this entry I want to talk about the emotion of having hope. I want tell about the emotion of hope and disappointment and the tug of war battle that has plagued my mind since my story started almost nine years ago.
It took over a year for me to summarize the last nine years of my story in my blog. I want you to stop reading this and take a minute and think of all of the events in your life that have taken place over the last nine years. I know many people have had children, changed jobs, bought a house, moved out on their own for the first time, gotten married, and even gotten a divorce. I want you to think about all of the events and all of the times you had hope, happiness, and sadness.
In the last nine years, I had one dominant thought in my brain. One emotion throughout all of the years in my 30’s. That thought was: Hope. I was hoping to find a cure. I was hoping that eight surgeries would give me relief. I was hoping when the doctors told me during the first four surgeries that I would be 100% afterwards, that I would be.
I had a lot of experiences during that time. I went on trips, embraced new friends in my life, even a few recently that live overseas in the UK. However, during all of these events my hope dominated my feelings. I used my hope and determination to squash the disappointment of the results I bore. The disappointment of learning the doctors were wrong.
I battled time and time again to increase my strength in my legs, feet, and back in order to walk without pain. A year would pass between surgeries until I would know if I was healed or not. After each of the four recovery years I carried the weight of being disappointed when I felt the pain coming back stronger and stronger each time. Hope helped me push back the weight of disappointment when the next four surgeries failed even though I knew they had a lower percentage of chance of helping me.
It was hope that kept me going when I would have good days – days where the pain was a lot less.
Days where I could do things and feel that I was getting better gave me more hope. That was until the next day in which my body would scream at me from the inside because I had pushed myself too much during those good periods. Days when I succumbed to the pain and lay on the floor for a week in hope of getting rid of the pain that gripped my body. It was during those days that hope of getting better started to flicker out of my life.
It took months of struggling with myself to adjust my thought process, and help from my friends to redirect what I should be hoping for. Instead of hoping for a cure, I learned to appreciate the good days. Instead of becoming depressed when my good days ended and were followed by bad days recovering from over-activity, I learned to enjoy the days where the pain was less. I did not push myself harder on the good days. I stuck to the same routine and relished the fact that that day was almost a pain-free day and I hoped that I could have more of them.
If I did not adjust my outlook on life and change my goal, I knew I would be battling disappointment the rest of my life. Over the last few months I became resigned to my situation. I survived through the horrific days, I cherished the days where the pain was less and I kept hoping that life would stay about the same and not get worse. It was not much of a life, being in a lot of pain everyday. But it was the best my friends and family, doctors and I had to offer . . . so I decided to make the best of it.
Months passed where each day felt like the film Ground Hog Day, and that was fine. No more surprises! I preferred that after years of not knowing how I was going to feel or how my body was going to end up after surgery. Days without surprises and keeping my hope in check were just what I mentally needed. I felt resigned even though there were days I had crippling pain overwhelming my whole body.
Tolerating my situation lasted a decent amount of time. That was until two days ago. I was lying on the floor for pain relief, and turned on the news. On ABC 27 they stated they were having a special in a half hour that would cover a new procedure. A new procedure for people with Complex Regional Pain Syndrome! A new spinal implant procedure for people with this condition that had leg pain or ankle pain from multiple fractures!! It was as if they pulled my medical record out, were reading it, and sharing how the new procedure could help me. I had never seen anything on TV about my condition let alone a new procedure. I turned to Amanda who was sitting on the couch, and pointing to the TV like a kid pointing at a new toy being advertised for Christmas, I yelled, “I need that! One please! Crack my back open, connect wires to my brain, I don’t care – give it to me!” Even Amanda was impressed by it, which is not easy to do, and stated, “This might really help you.”
The news program was offering a phone number and an email address that people could use to contact the doctors. I instantly grabbed my phone and wrote a page about my condition. It took less than ten minutes for them to get back to me stating that they could help me.
At that moment fireworks were exploding inside of me. My feeling resolved once again bloomed to having hope of a cure. It was the first time in a very long while I was completely happy and looking forward to the future instead of hoping for the next day to be less pain-filled.
The following day Amanda called their office and secured an appointment for the 6th of February to talk to them about this new procedure. She then called me, during a break from work, to let me know the date of the appointment and told me to let my dad know, knowing he would want to be there too. I started having instant regret letting my emotions rise and having hope once more.
As I sit here typing this, once again I am excited for the future. I did not want to set myself up for disappointment. One of my close friends in Virginia played devil’s advocate, saying the procedure might not be approved or good for me. She asked, “What if it makes you worse? What if the pain is unbearable like last time?” Her questions were on point. However, I could only answer with excitement. I rattled back, “At this point let them cut me up and keep trying. Something has to be better than this. I don’t care, I have to try it!”
After spending months and months retraining my brain to adjust my expectations, I am setting myself up for another huge case of disappointment. It was something I did not want to go through again. I did not know if I could survive going through it again. For the first time, Hope has me scared, and I wish I did not feel it.
I would love to know your thoughts. I would love for you to respond to me in the comments section. Would you have hope, if so would you keep it in check? How would you keep it in check? Would you take the risk of setting yourself up to be hurt and in pain even more after finally accepting your condition? I am going for it, would you?
It has been a long time since I wrote an entry for my blog. As I approached the ending of Story Part 2 in September, I was feeling emotionally exhausted. Before I wrote each blog entry I used to sit in my chair and remember as best I could about each experience that I was typing about. I mentally lived the last 9 years of my life in one year’s worth of blogs. If that was not enough to drain the remaining mental energy that I had, the fight to live without pain seems never-ending. When I started the blog, I honestly thought I would not be having pain by this point, or at least not as much. The happy-ever-after fairy tale ending I hoped for was being torn down by the reality of life. As the last entry was posted, I was worn out physically from my disability and mentally form living and reliving my life. I am now ready to move on and continue to keep sharing my tale. . . .
The remaining days of September, and October and November flew by in a blur of appointments, increased severity of pain, muscle spasms and twitches, and planning for a holiday vacation with the family. After all of the surgeries, procedures, and implants, the pain had not stopped. In fact it was as if a beast inside me kept growing, trying to take over every aspect of feeling that I had. Everyday I found myself lying on the floor to help lessen my back pain. My daily cocktail of 15 pills did not seem to help. The pain increased (continues to do so) and interrupted my sleep. At this time I had been sleeping only about 2 hours a day. If I am lucky enough I can go to sleep for 2 hours, than wake up for 2 hours, and then finally go back to sleep for another 2.
Over those long months I felt I had only one choice. I had to give it one last effort. I made an appointment with a new spine doctor and a new neurologist that specialize in pain management and Regional Complex Pain Syndrome. I remember waking up the day of the appointments asking Amanda what she thought the outcome was going to be. I should have sensed it, but at the time, a person who is desperate will see what he wants to see. Amanda looked at me and stated, “Maybe it’s worth a try”. Though her words contained a hint of optimism, looking back I should have noticed the eyes that went with those words. Those eyes had no hope – as if the lights had gone out in a long highway tunnel that blocked out all the light. At least, that is how I remember them now.
However, I didn’t notice her eyes, I only heard what I wanted to hear. To me I had no choice. It was my last chance to get any help besides medications, shots and implants. I have no idea what options were available, but hey, I had read an article about doctors trying to do a brain transplant. If they could some day transplant a brain, maybe Penn State researchers were working on something for the nervous system.
We arrived at Penn State Medical Center and already knew where we were going due to all of the other appointments we had there. The staff was extremely courteous and the resident that came into the room first was amusing. After spilling my guts to him about everything I had experienced and how much pain I was still in, I lay back down on the table and waited for him to respond. He smiled at me and said, “Wow.” I stated back, “Yeah.” He apologized for everything I had gone through, and to me it seemed really sincere. He stated he would go over everything with the doctor before he came in so I did not have to repeat myself. I told him that I was very thankful and that I will see him in a day or two. All three of us laughed. My disability has taken 80% of my life away, but it will not take my humor and laughter from me.
The doctor entered the room and rehashed very quickly everything I said. I was pleased that he grasped the situation so fast. He sat down, and performed some tests on me and he endorsed the diagnosis of Complex Regional Pain Syndrome, he agreed with all of the medication I was on, and stated I may need more pain medicine as time passes. He shared the opinion of my other spine doctor, that he could not perform any surgery to help me. He stated the risk/reward is too greatly tilted on the risk side. This is due to cutting into my nerves again and aggravating my syndrome. He also stated that he saw the severe arthritis on my spine and bulging disks. He added that I was doing everything he would have recommended. The only option that he offered that no one else had was another type of injection. However, after doing some additional research on his computer in the room, he turned around and stated it would conflict with my spinal implant and could cause death. We all agreed immediately that was not an option and the implant would serve me better and to leave it in. He apologized for not having any good news. I thanked him for his time and told him I am used to it and not to worry.
When we arrived home I felt very different. I can usually shake off getting bad news at appointments, and start researching my next appointment or avenue. The difference this time was that there was no path. After all of the years that had gone by, all of the procedures, all of the medication changes, it was now finished. I sat on the floor in pain, drowning in the realization that this was truly my life and a cure was nowhere in sight. It hit me harder than anything that came before it. I was so used to holding on to hope, holding on to the next appointment, the next procedure, my next idea. . . but there was none. There was nothing, all of my efforts had ended in failure. This was the exact opposite of my intentions for my blog. I wanted to find a miraculous cure, I wanted to say, “Hey, if you put forth the effort, good results will come”. I wanted to tell everyone do not give up. If they can fix me, they may be able to fix you. But this was reality. It wasn’t a movie with an ending I can write myself. I spent a year telling my story, and now the ending is not how it was supposed to be. My pain is not gone like it was supposed to be.
Thoughts like those kept spinning around in my head. It took a long time to snap out of it, even just a little. I honestly still am not totally out of it. I stopped talking to a lot of people as I processed the feelings inside of me. Sadly, some of those people stopped contacting me because I stopped initiating communication with them.
I contacted some of my doctors and cancelled my follow-up appointments. Many were simply to see how the drugs were affecting me. I figured since the ideas have dried up, I can have my neurologist control all of my drugs. I thought it would be best to have one specialist overseeing all of my drugs rather than having them supervised by a bunch of them. It would also be less stressful for me not to go to so many appointments. I was happy to hear my neurologist at Holy Spirit shared my opinion. I like him a lot. He and his staff and office employees are wonderful. They truly care for me and want the best for me. He also prescribed a sleeping pill for me a few days ago. So far it is not working, but I have to wait a week before it takes full effect.
That is what I have been up to these past few months. It has been a rough, unexpected road. My condition makes it difficult to type, as sitting up is hard on my lower back. It will take me a long time to write each entry. I plan on writing about other things soon as well. Maybe movies, what I been enjoying, how I’ve been keeping positive this week. I still believe being happy is the true cure for everything, and I want to share how I do that in hopes that others will read it and get an idea on how they can overcome their situation and be happy as well.
I hope everyone will have a good New Year. My next appointment will be in a few weeks. Take care everyone!