Month: December 2016
Eorzea and living in a virtual world over the 16 weeks, plus the few months of physical therapy kept me going. It was an outlet I was so thankful for. I felt blessed by having new friends to spend time with, to vent to, play with, tackle online objectives with; and by their acceptance of the new me. I had found a new place where I was wanted and could contribute, too.
As time passed I wanted to learn some different things. I began to learn how to play the guitar and started to study a new language. I decided to teach myself Korean through books and online courses. I picked that language due to enjoying their shows, culture, and having friend who is Korean. My new hobbies made time move faster, and learning something new kept my mind strong.
During this time and for the seventh year in a row I went through the routine of physical therapy. I managed to overcome the atrophy in my muscles through vigorous work at physical therapy. The leg lifts on the bench. The crab exercises with the resistance bands to strengthen my hips. Picking up marbles with my feet and placing them in a bucket to strengthen my toes, and the ankle exercises I performed with my therapist.
I managed to walk on the treadmill for five minutes at a time, but a pinching sensation kept me from walking any further. I worked very hard to try to increase my muscle mass back to normal, but as time went by the therapist and I agreed we could not move forward with my therapy. We needed to wait until my next appointment with Dr. Ficke at Johns Hopkins.
The realization and horror of the last surgery failing hit me that night. I knew that I only had a 60% chance of recovery, but I also knew that walking was to be expected. I worked extra hard this time to get my muscles back from not using them for 16 weeks. I did everything I was instructed to. I kept off my feet for those weeks. I started to move my ankle and legs when I was supposed to. I did not deviate at all from the plan that was laid out for me. I remember going to bed by myself alone that night, not knowing what I was going to tell Amanda when she got back home from work, and torturing myself with thoughts of how I was going to break the news to my parents. I fell asleep after tossing and turning for a few hours as a pinch of pain ran up through my leg every few minutes.
The next day I told my wife and parents. They were a little more optimistic than I was the night before. They expected that the pinching pain was scar tissue. The exercises were supposed to break up the scar tissue, but there could have been so much, that it could not. They believed all that I needed to do was have the scar tissue removed. That cheered me up. “Of course – scar tissue!” I thought. The surgeon had even said during a procedure like this there could be a large amount of scar tissue. I felt better after our conversation, and my follow up appointment was only a few weeks away.
As I waited, I continued my conversing with my new friends in Eorzea, learning guitar, and started to speak small sentences in Korean. Though I was pleased with my hobbies, I starting feeling not myself. l lacked motivation and interest in things I normally looked forward too. I passed it off as stress of the appointment coming up, but I could feel deep down it was something else. However, it was going to have to wait until I had my next appointment. Besides, I was sure I would feel better in week or so.
The day finally came when another trip to Hopkins was upon us. This was technically supposed to be the last follow up visit from the surgery in January, however I knew with this pinching pain I was probably in for a few more.
Dad, Amanda and I waited for Dr. Ficke in his office. He was running later than usual. We passed the time talking about Penn State football with periods of silence looking at the ground. After 15 minutes past the appointment time, he came in. He looked over the scar and movement and was impressed by my recovery. He was so impressed, that he took video of my foot and leg and the range of motion I could perform.
After evaluating my strength through tests and looking over notes from therapists, he agreed that the best course of action would be an arthroscopy. The arthroscopy would check the condition of the last surgery, and remove any large scar tissue that might be interfering with my walking.
Within the next hour surgery #6 was scheduled for four months ahead, on 12/16/2015. All of it seemed routine. We scheduled the surgery, said our goodbyes, and then hopped into my dad’s car. It was just another visit at the office to us. It took about two hours to get home. When we arrived, dad dropped us off and Amanda and I continued our day like nothing had happened.
The only thing unsettling at the time was the way I started to feel inside . . . something was wrong, something was off. I decided that I would call my primary care physician and schedule an appointment. I also started to have more pain in my joint. My ankle doctor up here suggested I see a pain management doctor until the surgery, and ordered an EMG (electromyogram).
As soon as I arrived home, I made an appointment to see a pain manager. By the time the appointment for the pain manager came I was starting to feel an increase in pain in my right leg and ankle. I told my doctor my story, he prescribed medication to help with the pain until surgery and suggested I follow up with the EMG a week later.
Within the same week, I had an appointment with my new primary care physician who was an internist. My former family doctor shut his business down with little notice and I had to find a new doctor. My internist was stunned by the amount of surgeries and physical therapy I had gone through. I spoke with him about lack of motivation, and desire for accomplishment. He stated that could be from the pain medication, but wanted to run a few blood tests. I told him I was on hormone therapy from a few years ago, and I think I needed an increase. He stated he did not believe I needed to be on the therapy at my age and told me that I need to see an endocrinologist. He couldn’t get over the amount of medication I was on, and told me to take the pain medication as prescribed and let him know the outcome of the endocrinology appointment.
I was starting to become overwhelmed. I was not prescribed my regular hormone medication because I needed to see an endocrinologist, I now had a pain manager with an EMG coming up, whatever that was, and I had surgery scheduled not too far away. It was becoming a lot to keep together and handle. The only thing I could do was take one day at a time and one appointment at a time and prepare myself for any bad news.
As each day passed, the pain worsened. I was trying to take as little pain medication as possible, so I would not get addicted. I knew the next few months leading up to surgery would be a very trying time, but all I could do was go through the motions of what was asked of me and wait….
The next entry will be about my EMG, so anyone who never had one will know what to expect, and it will also be about my endocrinologist. My blog has hit the point I have been waiting for. It will start showing how I have to fight for the medication, tests, appeals, and procedures to be approved by doctors and insurance. I hope by reading my future blogs, that people who have doubts about fighting for their care, will be inspired to keep on fighting. I thought it was important to hear my back story to know everything that I have been through in trying to feel better.
I have learned in life, that when you think things are bad they can always get worse, so try to enjoy where you are at now, even if it is not an ideal place.
I was back at home. Surgery 5 was over. I sat in the chair for 16 weeks as instructed. My only time off the chair was to take a shower, go to the bathroom, and go to my follow-up appointments.
As I wrote in my other entries, the stress on Amanda was heightened. The only advantage we had this time is we truly knew what being off my feet entailed, while I was slowly digested by my chair cushions.
The pain was not as bad, as Dr.Ficke predicted it would not be. He stated most of my nerves had already been cut in the area, so the worst of the pain was eliminated during the other surgeries. I was able to lower my dose of pain medications within the first week. Unlike my surgeries at Penn State where I had to stay highly medicated and was barely up a few hours out of the day, I found myself having hours and hours and hours of coherency.
I am not sure which was worse during those first few weeks, the pain or loneliness. Amanda worked overnight shift at the hospital, and on her days off she would have to run errands and catch up on house chores. My parents visited when they could, but babysitting kept them away a lot. They could not bring a toddler over during the afternoon when Amanda was sleeping, and by the time she woke up and went to work it was already getting late.
Worst of all was the timing of this surgery – happening right after an earlier one. The prior surgery I had a lot of work friends/associates come by to visit. This time hardly anyone stopped by. I had a few here and there and my best friends visited when they could, but they had families of their own they had to take care of. As the hours slowly passed and the days slowly got longer I realized it was not going to get better. The lonely nights spent at home felt heavy, I went from having many friends from work stop by, having visitors I could count on only one hand. Though I am very thankful for them, it did not quench the taste of sadness and loneliness that overcame me at night when Amanda was gone.
To fill the void I turned to a multiplayer online game to help pass the time. I had been playing it for a few months already, but was not dedicated to it, due to the surgery and the pain that I was in. It was hard to concentrate. But now after the surgery, I had a lot of time to fill. I turned to a game that changed my life forever. The game was Final Fantasy XIV – A Realm Reborn. I belonged to an “FC” , a group of people who play online together and decided to join a community to help each other in the game and to socialize. There were 100’s of “FC’s” in the game. From the start to the end of the game when I was done I belonged to one called “WOTS” The Warriors of the Sun. Many people change FC’s during their time playing the game. Reasons would include not getting along with members, not enough members to surpass the trials within the game, etc.. However, “WOTS” was the only FC I joined, and I was lucky to be among a group of online friends that got along.
There were times when leaders changed hands and a time where a leader was overthrown due to circumstances. We always kicked out members that caused drama, and most of all we had enough people in the group to keep it friendly and weed out the not so friendly players.
It took many months of recruiting members to our community inside the game, but it got to the point where we had a close knit family. The game brought enjoyable challenges back into my life. Some of the bosses in the game were so challenging we had to start talking to each other online instead of typing in the small chat box that was provided. You could not type while trying to be titan. To beat a boss like him it took crackerjack timing, and strategy. If one person messed up, none of us would get past the challenge. Usually the challenges involved a group of eight people and we took turns getting people through these challenges, so they can move on with the game.
As we talked more and more we learned a lot about each other. We learned that some of us were disabled; we learned some of us were still in school, and as we grew closer to each other we began to share personal information. The more personal information we shared the more we could comfort each other regarding our real life problems such as: dealing with pain: and relationship, medical, legal, and financial advice. We may have been players in a game in a virtual world, but we were all people living in the same real world. Lawyers, nurses, mechanics, technical support, bankers, students, all came together under one game and under one community called “WOTS”.
It did not take long for us to bond. As we grew closer we shared where we lived: PA, Hawaii, California, Michigan, Virginia, Connecticut, Illinois, and a multitude of other places.
As the weeks went by and my recovery progressed, I found solace in these friends. It did not take long long for us who lived close by to want to visit each other. Three families, mine included, decided that we would meet at a petting zoo in Virginia and then go to the Air and Space Museum.
I remember arriving at the petting zoo. I had my crutches for the zoo and a motor scooter for the museum. I crutched through the entrance, looking around for anyone who might sound like someone I knew. Within seconds a woman with long hair turned around and said, “Raijin?” (my screen name) I said, “Yeah, Lena?” She laughed and said I could tell it was you by the crutches. I introduced her to my wife (Trinity). It then only took a few minutes more for everyone to arrive. We had never seen each other before, but recognized each other’s voices. All of us introduced ourselves by our screen names: (Trin, Raijin, Lena, Patton, Rinah and Fid) and the children by their real names. We laughed in a group right outside the entrance as we tried to figure out what to call each other. Although we knew each other’s real names, they sounded odd to us – so we used our screen names. All of us agreed that our screen names sounded much more natural. Years later, some of us still use them, even after having left the game.
It was amazing meeting each other online, but living close enough to meet in person was even more amazing. It only took a few moments of awkwardness to get to know each other in real life, but after those minutes, we felt like friends who had known each other for years.
After our trip at the zoo we went to the museum. Not one of them made me feel uncomfortable needing a scooter to get around. No one asked me questions about my health. They already knew, and they accepted me the way that I was. They accepted the new me…the disabled me.
After arriving back home, we all logged onto the game the next day and talked to each other about the trip. It was awesome and it made the game even more interesting, having truly connected with each other. My only regret was not being able to see everyone I became close to in the game since they lived further away, some of which included, but not all: Sky, Kels, Zarla, Arya, Bama, Miko, Count, Countess, Lyrrien, Mo and most of all a person I became very close to online, Shara.
It was a very welcomed distraction from recovering alone. The 16 weeks of non-weight bearing went much faster with them in my life, and before I knew it, it was time for physical therapy. Physical therapy was exactly the same as before, but it was much harder because of my having been seated and not moving my leg for so long.
About the third month in physical therapy, summer of 2015 was upon us. Our online group had grown bigger, and I had a fascination with the PA Renaissance Faire. I started to make a huge deal about attending, and then to my surprise my friends online wanted to come too. We planned it all so fast and we came up with a day in August we were going to meet. It was only a month away, and this time even more people were going to join us. This trip included: Lena, Miko, Lyrrien, Fid, Rinah, Patton, Trin, myself, Countess, Count, and Tora.
Needless to say we all had a blast. The transition from online life to real was simpler than I thought. We came back to my house and hung out on my porch till late in the night. I grew closer to their kids and love the time I got to spend with them. I find myself lucky to know that almost every month I get to see them again. They have grown so much since then.
My online family has become a real life family to me. They helped me survive the depression of living with pain and loneliness. I found it amazing they were willing to come from all over the east coast to join me on my trip to the Ren Faire. At the time I could barely get some of my friends who live 20 minutes away to visit me, but these online individuals were willing to travel as much as six hours to see me.
I think it was only a few weeks after that trip that Shara was going to be in the area, and I got to meet him, his wife, and daughter in real life. It was all too amazing that through a game anyone in the world could log onto, we all found each other.
To this day I still talk to almost all of them. Another year had gone by and we all got together again for another Ren Faire trip. Our friends who live closer in Virginia (Fid and Rinah) and a couple that moved to Pittsburgh (Patton and Lena) try to meet with Amanda and me on a monthly basis. We talk or text almost every day, and Amanda and I have grown close to their children as well. Most of us no longer play the game as we have moved on to other challenges, but none of us has moved on from each other. I also speak to Shara, Lyrrien, Miko, Count, Countess, and Zarla as well.
They are my new family of friends. We have also taken more trips together, such as the beach, Chocolate World, Medieval Times, and Hershey Park. A virtual world helped me survive in my real one.
Thank you guys for being my friend and accepting the new me.
There will be more stories about my online friends, but I needed to have an entry just about them. There was nothing new in my recovery of 16 weeks that I haven’t covered before. There were the same challenges and stress on Amanda, but this time we had light that helped us get through it, the Warriors of Light. Long Live “WOTS”!