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!