The Story

The End  – The Story Final Chapter

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Six weeks of sitting on my chair was a breeze.  More of a breeze for me than the cushions that I sat on. The cushions supported me for sixteen weeks straight for three times, and for six weeks two times. The cushions once again had to hold me up for another six. The wear was starting to show.  The recliner’s footrest was starting to fall and I had to put a high container underneath it to prop up the foot support.  The chair was looking more worn out than I was feeling. However, I did not want to get a new chair yet. The chair saw me go through the hardest time of my life. The hopes of becoming better just to melt back into its cushions. It became an extension of me, and I truly believe if I sat on it long enough its fabric would have started to grow on my arms.

However this time was another short period.  It was not a sixteen week sit out or a twelve, it was just another six. To me that was nothing.  I did it before. I did it before as I anticipated regaining my freedom. Being able to walk again, being able to hold a job again, and most of all helping my wife more than she had helped me, which would take a lifetime to do. However this time, there was no excitement, no anticipation,  and no true hope that those things were ever come to fruition. I knew…I knew…knowledge can sometimes be worse than ignorance. I knew the allograft surgery, surgery five, only had a sixty percent chance to work and I felt that the doctor felt this one was like catching lightening in a bottle. I succumbed to my chair’s cushion and rested my feet on the extension that was just as broken as I was. It was as if the chair foreshadowed the outcome at the end of six weeks.

As the weeks went by, Amanda went through an all too familiar routine.  Taking over all the household duties, cooking, taking trash out, mowing or snow blowing whatever the weather called for, shopping, and most of all taking care of me. I felt and feel bad that a newlywed wife went from a new bride to a caretaker within our first week of marriage and it lasted over eight years, our entire marriage.

The final week came and Amanda and I got into our car, to head to what became our final appointment with Dr. Ficke. The car ride was silent.  Amanda concentrating on the road and I staring out the window realizing what could have been if the doctors had only been right just once in the last eight years. I watched trees pass on the left side, and cars pass on the right. I just wanted to get there and get this appointment over with. I had the feeling nothing was fixed by the final surgery. I moved my ankle a bit inside the cast and could feel the pinching and pain going up my leg already. However, I kept that to myself.  I did not want to take the hope away from Amanda and my parents. But for me, the hope was already gone.

As the final trees passed and buildings came into view, I saw the familiar prison, the same  graffiti and street signs. We were here and it was time to find out the final truth.  It was the final truth because the doctor already stated any other procedures would harm me more than help me.

In a few minutes we were back in the cast room.  Two people came in to cut away the cast and to wash my leg, remove all the dry skin and cast leftovers before the doctor came in. As soon as it was off I moved my ankle in the shape of alphabet letters the best I could like in therapy, just to see what it felt like. It was hard to move with the swelling.  But I got my answer, and Amanda did too, as she read the wincing on my face.  She frowned immediately.

It took just fifteen minutes for the doctor to come in.  Before touching my foot, he told Amanda and me that the new cartilage was a lot rougher than the original cartilage.  That increased the chance of its wearing away. He moved my ankle around a bit and then looked at me. I didn’t even have to tell him, he knew.  He studied my face and said “It didn’t work did it?” I sighed and said I didn’t think it did.

He stated he was sorry and he suggested it might get better with time, but I would have to take care of it the rest of my life. He stood by his prior decision not to perform anymore surgeries until I became much older. My instructions were to do the best I could to regain my strength and keep the pain to a minimum. I was instructed to continue seeing my pain manager and let him know the results so he could better help me.

Before he left the suffocating room that felt heavier than ten tons of weight: he wished me luck, apologized, and stated he did the best he could in recreating the bone and cartilage. He truly hoped taking away the scar tissue would help, but it did not. He then stated, that I would not have to come back again unless I felt the need to.

We said our goodbyes and thank yous and headed back to the car to go home.  Home, where my broken chair waited to engulf my broken body.  My dream of getting back to normal was gone, replaced by the concession that my new reality was a life filled with limitations.

I am not quite sure how Amanda felt. I was too involved in my own feelings to be able to determine hers, but she seemed to do a good job keeping any type of disappointment off her face. I think inside she felt it, but she knew how I felt and did not want me to see it on her.

The two hour drive home was hard, I almost wanted to cry.  I had pain, I was going to have to live with it at the age of 37.   It seemed I was going to have to take pain medicine that made me dizzy and tired the rest of my life.  I was truly depressed.

We walked in the door silently, and I melted back into my chair and turned on the TV.  It was time to get used to my new life.

Afterword:

 It took me a long time to start this entry.  I had trouble figuring out how I was going to begin telling this part of my life. We are a year out until  present time. I did not know if I was going to sum up everything in one last blog entry or if I should keep going. Each time I was going to start I became confused about how it should continue. What happened in the year or so after the 6th surgery is completely different from what happened before it: The way I feel, the way decided on how to do things, and the way I attacked my health care.  I decided to continue my blog by ending the first story and beginning to tell a second one. There will not be many parts to it.  My first story covered an eight year span. The second part will cover about a two year span. However, what happened in those two years, I really felt merited a story of it’s own. If this  were a book, it would have become Volume 2 of this drama. 

Thank you all for following along.  It is not over, there is much more to go. Do not become too depressed, because as I write this, I finally have hope once again! 

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The pain I felt was not over, but neither was I trying to find a cure.

The Electrifying EMG    – The Story Part 31

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I went to the endocrinologist nearby and at Johns Hopkins to get answers about my hormone levels and I ended up with more questions about these anomalies in my brain. I discussed these results with my PCP and pain manager and they showed more concern about them than either endocrinologist did. No matter what they said, there had to be a connection between the anomalies and my hormone and blood levels, but I didn’t have time to worry about it. I just put it on the list of things wrong with me that I will check out later.

My focus had to be on my next test which was the EMG at my pain manager’s office, and the surgery that is coming up on my ankle. I did not have time to follow up on my anomalies if two doctors said it is fine for now. I remember walking into his office. It was on the second floor of a building off an exit of a busy highway in our area.  We always got to park directly in front of the building. The handicap tag did come with it’s much-needed advantages.

I had no idea what to expect. I was too busy with my brain tests to look up the EMG test on the internet. I walked into his waiting room and was immediately called back into the room with Amanda. As soon as we entered the room I was told to remove my clothing and put the robe on. It was getting to the point that every time I go to see a doctor, I had to strip.

I rolled my eyes at Amanda, sitting in the guest chair along the wall, as soon as I heard the instructions.  After the nurse left, I stripped down to my underwear and put on what seemed to be the smallest robe that was made. I barely could get it on and tie it around the back. We looked for bigger gowns in the room, but none was found and I was not going to go in the hallway and ask for another one. Amanda just looked at me and said it is fine for now just sit on the table.

Following my second set of instructions, this one from my wife, I sat on the doctor’s table in my robe/corset. Reprieve came about fifteen minutes later when the doctor entered the room. He sat down in the little round stool by the door and went over some personal questions. I answered each question promptly.  Some had to deal with the pain, feelings in my leg, and the normal what are you allergic to questions.

Once done, I was instructed to lie down on my belly with my legs toward the door. In front of me was a machine with a three inch green and black screen, which looked like it was made from 1980. Coming out of the back were multiple octopus tentacle wires, that I was sure were going to be connected to me and below the screen was a big dial, which I assumed was a power control mechanism.

I couldn’t imagine what was about to happen to me, but the anticipation only lasted a second as the doctor walked towards the head of the table.

“Okay Mr. Donnangelo. I am going to place pads on you in multiple places along your leg and back and inside your thighs. You are going to feel multiple shocks. some of which will be strong and might hurt. If you need to stop, tell me.  I am skeptical about doing this around your right ankle since it is already in pain and injured, so we will proceed and see how it goes.”

“Ummmm…okay”, I responded, feeling as if this was a bad idea.

I looked over to Amanda.  She was staring at her phone, probably on level 454 on Bubble Cat Rescue. I assumed this was basic for her, working in a hospital. However, it was my first time going through it, and the only thing I could do was to brace for the pain.

“We are going to begin, you will feel a couple of electrical shocks in a row”, he stated.

The shocks went through my legs. It was like touching or putting your tongue on a battery  and getting a jolt from it. It was not the best feeling in the world, but I was able to handle it for the few minutes it took.

“Okay that was good, this one will be about four shocks, they will be at a higher level. If you need me to stop let me know, it will be around your right ankle.”

I appreciated the warning and I gripped with white knuckles in preparation of what was about to come. “Okay here we go.”

I tensed and winced as the first shock went around the already wounded tissue inside. The second shock hurt my right leg worse than expected. I lifted my left leg, which was not held down by the doctor, into the air and slammed it down onto the table.  I was determined to get through it, I wanted an accurate test. The following shock was right by the scar left from the prior surgery in the year.

I screamed profanities.

“Uh-oh, I got him swearing”, he stated, turning to Amanda. He then said toward me, “Don’t worry about it. I hear much worse.  Are you sure you want to continue?”

I wanted to say no. My leg felt like it was shredded into pieces. It might not have hurt that severely to another person, but having the wound present made the pain feel exponentially worse.

Against my will I told him yes.

“Okay, we are now going to do your lower back. You will feel electrical shocks followed by needles pricking you. It will not last long and then it will be over.”

As promised, he continued the testing on my back. Each press of his instrument sent either a stab or a current through my lower back. The pain was not as bad as the ankle, but it still was very uncomfortable. I swore two more times when he hit the L4-L5 area of my spine, but as the pain calmed down I noticed the shocks and the pin stabbings had ended. “You did really good. Let me wipe the gel I used off of your legs and back, and then you can sit up.” He looked toward Amanda again, “I swore he was going to kick me in the face.  I am surprised we were able to complete the test.”

Amanda looked up and agreed (all routine for an RN that works in the ER of a hospital) and then looked back down at her phone… level 455, I thought.

I was glad it was over. The pain was strong, but it didn’t last long. I sat back up on the table recovering from the torture I just faced and turned my body towards him.

“We are going to have to wait for the results, but I can tell that there is something there in your right leg, something is off, it could be the reason the pain is so bad, there is a problem, but let’s wait for the results.  You can get dressed and go when you are ready. You did good .”

“Thank you for torturing me”, I added.  We both laughed.  I got out of the ill-fitting gown and put my clothes back on. I grabbed my crutches and stood there ready to leave. Level 466 I thought… “Amanda let’s go”

“Oh, you’re ready, let’s go.”

I grabbed my crutches, thanked the nurses and the secretary, and headed to the first floor.  I walked out of the building, opened the passenger door, sat down, took a deep breath, let it out, sighed, closed the door, put my seat belt on, looked at Amanda exhaustedly and stated, “Let’s go home, we have a surgery to prepare for….

Afterword

To this day, that test was the most painful test I have experienced. It is an important test to determine if a patient’s nervous system is working correctly, but it is not something I would sign up for again. The doctor also stated that there are so many nerves in your system it would be impossible to test them all. The test only tested the biggest ones. I had the endocrinologist appointment out of the way and the EMG out of the way. I had no answers as to why my ankle was deteriorating even with donor parts. I had no answers as to why my hormone levels were off. I also had no answers about what the anomalies were in my brain. The only thing I could do was to press on…

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This is just one page of six of my test results that was given to me a few days later.  I am not sure of the exact details of this readout, but it did show that I had neuropathy in my right leg.
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No matter what was and still is thrown at us, Amanda, Pusheen, and I are still determined to keep smiling.

The Endocrinologist  – The Story Part 30

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I followed through with the advice of my PCP and I went to the Endocrinologist. I really did not have a choice. I was on a prescription drug for my hormones and after using all of my refills, I was now not able to obtain the same prescription unless I went to see him.

On the day of the appointment, I found myself in a regular-sized doctors office, with three chairs, and a comfortable leather chair in the corner for the patient with a table of magazines beside it. On the other side of the table was a smaller steel chair with little padding for a guest, and beside the desk was your average round black swivel chair the doctor sits in.

The dread of knowing what was going to happen weighed on me more as each minute passed by. I was once again going to have to start all over with my story on why I was on the medication to begin with, and I was going to have to go through the routine checkup of turn your head and cough – a common medical practice that is not enjoyed by most men.

After ten minutes passed, the doctor, who was a lot shorter than I am, entered the room with his laptop. He asked all of the usual questions such as: allergies, medication, and why I was there.  As I finished answering the questions, my dreadful concern from before came to reality when I saw him reaching for his gloves. I already knew I was OK, I had had the test done multiple times, but I had to go through it again.

After the short uncomfortable procedure, we finally got down to business. I stated to him that I needed my hormone medication that had been prescribed by my old PCP who had performed all the necessary tests; however he had closed his practice.  My new PCP stated I had to come see you to get it.

Without missing a beat and sounding like a broken record he stated, “Doug, you’re too young to be on this medication. Most men are not prescribed this until their 50s or 60s.” I stated back, “I know that, but here we are, and if you can tell me why I need it, that would be great, because my last doctor could not and now maybe you can.”

After the comment, he stated most reasons are unknown and that many men as they get older find benefit in the medication, but at my age I should not be on it. He then added I had to be off the medication for a few months, so he could get an accurate reading of my blood levels.

Hearing this new information, anger started to grow deep inside me. I told him that I cannot be off the medication. It will mess with my mind and the way my body feels.

He then literally refused to write the script until two months passed and I took the blood tests.

I told him, “Fine, whatever I need to do!”  Then I grabbed the script from his hand, and left the office without checking out.

I went home mumbling to myself that now I have to go two months without my medication and I have a surgery coming up. Life was becoming a bowl of cherries – if it had not already been one!

It’s impossible to write down how I felt during those two months. I did not sweat and did not have panic attacks, but I could feel my body change instantly. I grew angrier and angrier as each day passed. I could feel depression overcoming my mind. Amanda noticed the changes and saw my attitude and composure were becoming much worse. The two months felt like years.  Not having a hormone I knew Idesperately needed coupled with the pain in my ankle made me want to tear my hair out.

The two months went by and I took the blood tests he demanded and my follow up appointment was finally here. I entered his office like a raging bull.  I yelled at him as soon as he entered the office, “You had my blood test back for two weeks and you still did not prescribe my medication. It has been over two months and I have been going through hell inside my mind. How would you like it if someone ripped out all of your hormones, told you to wait, and then when the waiting period had elapsed your  phone calls were ignored?”

He did not seem surprised I was so out of balance. He did the best he could to calm me down, and pulled out the test results out of my folder. “Mr. Donnangelo, you have a strange deficiency.”

“I know that! That is why I was on the drug!” I interrupted.

He continued: “You have a strange deficiency in your hormones. Your levels are really, really low.”

“Fine. Maybe we can find out why, but can I have my prescription now?” I sneered back. He was telling me information I knew years ago. He did not have to put me through two months of hell to find out what I already knew.

“Unfortunately, I cannot  prescribe your medication. . . .”

“What!!”

“We need to do more testing.  This blood test shows that your pituitary gland is not sending out the signals that it is supposed to be sending out. It is like it is not even there.  We may have to do an MRI, but I am afraid I do not think your insurance is going to cover it. I do not know if I should even put it through, because only 5% of the population has any type of tumor on their pituitary gland.”

I could not tell you how angry I was getting, but I can tell you my coat was coming off when I jabbed back at him, “Listen here Doctor, I did what you asked me to do, I went off the drug for two months.  I know I need it, I have proof I need it, now give it to me. “ It was as if I were a drug addict on a street corner.  “Also, if there is a 5% chance that something bad can be inside me, I guarendamntee you that with my luck it is a 100% chance that I will have it. You will put that MRI through and by God if the insurance company tries to block it, I will roll over their ass like they have never seen before.”

With this verbal attack the doctor did not expect, he stated that he still wanted to wait to see if the MRI was approved in case my problem was bigger than what he expected. He said he will write the script for the MRI to be done right away and that he will see me in two weeks.

“I will give you two more weeks, but by then I will be back on my medication, so I can feel normal and better.”

Once again I left the office in a rage without checking out.

The two weeks passed, and the MRI was done within that time. During  those two weeks, I think Amanda worked more hours than she ever did to avoid being home with me. My new friends in Eorzea also knew something was wrong as I grew silent in our chat groups.

 

Once again, the two weeks seemed like six months. I felt like I was losing my mind.  It is hard to describe the impact of not having an important hormone in your body, but when your body goes into shock from not having it, it was a worse feeling than a deteriorating ankle.

Two weeks passed….

I sat in the comfortable leather chair, probably the only thing that gave me solace in that office. I started hating the doctor and that office, but I knew it was my only channel to get my drug back, and I swore revenge on my PCP who made me go through this.

He came in. Same old yellow folder, a folder that was growing thicker with paper, and his laptop.

“Mr. Donnangelo, I will get right to the point. Your MRI that was approved by your insurance…”

“Better damn believe they were going to approve it after I got off the phone with them.” I chimed in.

“. . . shows that you have a small anomaly/tumor on your pituitary gland.”

“I told you! 5% chance equals 100% chance when it comes to me. Now what if we did not get it done because you were afraid to put it through, because the insurance might not approve it?”, I scoffed back at him.

During all this he remained very calm.  He probably had training in dealing with difficult patients, but he still deserves credit in the way he handled me.  He continued, “But that doesn’t explain why your pituitary gland is not working. The anomaly/tumor is too small to have an impact.  We are going to have to check it next year to make sure it has not grown, which most do not. I actually do not know why you have a deficiency. I am going to prescribe you your medication, because you do need it.”

“Finally! You wasted three months of my time, took me off medication, the PCP would not give me my medication, told me I shouldn’t need it.  I spent tons of money on an MRI to find out I have an anomaly on my pituitary gland that only 5% of the people in the world have, just to end up on the medication my old PCP gave me a long time ago without all these tests. And what did we learn and what can we do about it? NOTHING! I have a pituitary gland not sending out signals, you find an anomaly on it, but nope, that is not it and now I can have my medication. THANKS. Not that I did not have enough to worry about with surgery coming up.”

He took it all in stride.  I now admire him for it, but back then I was looking for a reaction. He prescribed the medication I already had been on for years, and within a week I felt back to normal.

He stated before I left, “Let me know if your new insurance company approves the medication, they are much stricter than your last one.”

Before leaving the office I looked at him and stated, “With our  documentation you do not worry about my coverage.  I will handle the insurance company, you just prescribe what I need.  I assure you the insurance company will not say no to me.”

The good news was the insurance company did not decline my medication like they originally did the MRI. I was finally home free.

I did stop in my PCP office later that week to let him know all of the results and everything I went through.  The only reaction he gave me was that he was surprised I needed the medication at my age and did not understand why my body was acting the way it was.

It felt like I had been deprived of my medication for years, but it was only for a few months. I had another follow-up appointment with the endocrinologist.  I was more civil and he could see I was feeling much better. He had no problem prescribing refills as long as I agreed to have blood tests done, making sure my dosage was not too high, which was OK because I had to do that before with my old PCP.

With this behind me, I prepared myself for my upcoming EMG appointment at my pain manager’s office, and within a few weeks after that, surgery #6 at Hopkins. It was a busy few months, but at least I was feeling normal. Whatever that is….

Afterword

I sent my MRI results to Johns Hopkins since I was already a patient there. However, they did not give  me any new information that I did not know. They stated the exact same thing, they did not know why my pituitary gland was not sending out signals and they stated I have to keep an eye on the anomaly to make sure it did not grow.

I was angry not only from being off my medication and changing of the chemicals in my head, but I was mad that the doctor seemed to bow down to the insurance company and what they may or may not approve.  In later entries I will go into more detail on how I got other procedures and medications approved after they were denied. I never backed down once to the insurance company and I never lost yet. Do not let anyone stand in the way of your feeling better. Fight for your right to feel better.  My fight continues on and once again I ask you to join me….

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The only thing this MRI solved was to quite the skeptics…. I really do have a Brain!  Unfortunately, I cannot point out the anomaly/tumor. I was never shown where it was at.

If It’s Not One Thing, It’s Another – The Story Part 29

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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….

Afterword

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.

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My Fender Guitar.  It has helped me pass many nights.  I am still not the best at it, but I have learned a lot since I have first started.

Finding Friends in Eorzea– The Story Part 28

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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.

Afterword

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”!

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Our first get together at the Petting Zoo and Museum.
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Baby Zach enjoying my scooter
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A Ren Fare I will not forget.
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Our Virtual Selves.  I am on the left kneeling down with the blue coat and white hair.  From what I heard Raijin may be coming out of retirement soon.  However, this rumor is not confirmed.

Surgery 5 at The Land of HOz – The Story Part 27

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It was another cold blistering day. 4 a.m.  I peeked out the window and saw the world covered in frost, but was glad to see the roads not covered in snow or ice.  I slid off the bed only half awake without the assistance of an alarm to wake me up. I tugged on Amanda’s arm to wake her up to get ready. Amanda normally takes a half-hour to get out of bed, but today she knew she had to get ready right away.

I put on loose clothing. Some heavy wool sleep pants, shoes, t-shirt, no matter how cold, I always wore a t-shirt, and my watch. I looked down to confirm the date and it blinked through the dark room 1/6/15.

The holidays were over, the trip to Disney behind us, it was time to get down to business once again.  It reminded me of being at work. Come January the decorations were gone, the festivities were done and all that was remaining was working on our budget and business plan for the year. Though this business was different, this business was to get myself walking again.

Normally, I would never be starving at 4 am, but knowing I could not eat magnified the affect of hunger.  Amanda was in the kitchen eating a little bite before we left and my nose was pressed against the cold glass of our window waiting to see the headlights of my dad’s SUV.

This was the most serious of all the surgeries, and my parents wanted to accompany Amanda and me. The surgery was scheduled for 8:30 a.m., the second one of the day. We were told to be there an hour and half early, and with a 2 hour drive we had to leave a little before 5 a.m.

Fifteen minutes before 5, I saw the lights break through the darkness of the morning and turn down my driveway.  It was show time. I gathered my belongings to spend overnight at the hospital. Amanda gathered her electronics and we walked out the door. Immediately as the door opened, the blistering cold swept down my winter jacket, through my wool pants, and around my right ankle. The pain from just the wind was almost paralyzing. Quickly as one can with a bad leg, I made it through the cold wintry air and hopped into the back seat. The doors closed, and with the cabin of the car already heated, my dad backed up and headed down the road towards the highway with all of us in it.

It was early and not much was said besides hello. They knew not to ask me any questions.  I was tired and though just a little worried I did not want to talk about it. It was scheduled to be a two-hour surgery and I had to spend the night. Amanda was staying with me and my parents were going to come back down to get me when I was ready to leave. I had no choice.  The doctor stated the nurses would have to control my pain for at least a day before I was let go. Knowing I had to spend another night in the hospital put me in the mood of not wanting to talk.

As we were driving down 83 South, the darkness of the day was broken by the first rays of sunlight. We were about an hour into our trip when my cell phone rang. It was Johns Hopkins.  My stomach hit the floor. Were they calling to reschedule to a different day, were they calling to tell me they were going to be hours behind, was I going to be sitting in the waiting room waiting longer than expected? As the thoughts filled my head the phone rang for the third time.

I was brought back to reality when Amanda hit my arm, and I quickly answered the phone. “Hello?”

“Hello. Mr. Donnangelo?”

“Yes.”

“This is Johns Hopkins. You are scheduled for surgery today and there has been a cancellation. We wanted to move you up to first surgery. Can you be here any sooner?”

Feeling relieved to know I was not going to have to wait longer, I responded, “Umm. We live two hours away, but we’re only 45 minutes away from the hospital now.   I can be there as quickly as possible.”

“That will be great, we will see you soon. Thank you.”

I told my dad the news of being moved up the schedule and I swore I heard the rumbling of the engine get a little louder.

It did not take 45 minutes to get there. We were there within 30.  Greeted by a concierge with a wheel chair at the front entrance, I slipped into it and Amanda exited the car, leaving my dad to park it.

In the wheel chair, I was wheeled up the hall way, down a corridor, and then into the elevator to the floor we needed. I am not sure what floor we were on, the main hospital was so big. But as Amanda turned the corner with my chair, I heard a doctor standing by a bigger than life scheduling chart asking, “Has anyone heard from Mr. Donnan..Donnange..” My name was always hard to pronounce. Amanda wheeled me right behind him and I stated, “I’m here”.  He turned around and exclaimed, “Great, let’s go.”

A nurse took over the chair and I was wheeled back to the prep room. They told Amanda they will get her when I was ready and my parents as well. Amanda wished me luck and stated she was off to find my parents. A kiss later, I was turned around and wheeled back to the prep room.

The prep room was déjà vu. In and out came personnel asking questions and telling me what to expect. They went over the procedure I was having.  They had me sign waivers upon waivers.  An anesthesiologist then came into my room after many others left. She was very pleasant.  She asked me what I hated about surgery the most. I knew immediately what it was. I told her how I hated feeling groggy after the surgery due to anesthesia.  She stated that they did that so the patient will feel less pain. I told her since I was receiving nerve blocks that will last 24 hours, that I will not be feeling pain anyway. She looked at me, thought for a second, and agreed. She stated since I had a nerve block and I was staying overnight she would give me a medicine with which I would wake up and be aware immediately. I was overjoyed hearing the news.

After she left, the Wizard came in – Dr. Ficke, one of the best doctors this world has to offer, in my opinion. He thanked me for getting here early and stated he wanted to get my family together to go over the surgery all at once. The family gathered in my room and he noticed that my mom was very worried. He spoke slowly and kindly and in words my parents could understand. He stated the procedure was going to be two hours long. He stated that if the procedure went 100% according to plan,  I would be expected to recover only 60%. My mom kept her questions to a minimum and he answered them in kind. After five to ten minutes, he stated it was time to start the surgery.

Everyone piled out of the room. In an instant, I was surrounded by doctors and nurses. Once again I asked them not to tell me when I was going to be put out, and as I headed towards the magical surgery room of HOz where all is cured, I literally broke out in a loud song. I blame it on pre-surgery drugs, but I am not sure if they had given them to me yet. As I was wheeled to my next destination, I burst into song with a chorus of: “HAAAA HAA HAA HOOO HOO HOO All the day long that is how we do surgery in the wonderful land of HOz. A cut, cut here and a cut, cut there, everywhere we cut that is how we do surgery in the Merry old Land of HOz.” I am sure it was at that time, they put me out, because I remember nothing after that…

Two hours.  It would be about 11 am, when I woke up. As promised, after the surgery was over and I was put into recovery, my head came right off the pillow. I did not feel groggy.  I looked up at the clock on the wall.  6 p.m.  I was so confused. Was it really 6 p.m.?  It couldn’t have been. It just couldn’t. I came in at 8 a.m.  The nurse saw I was awake and came over.  “How do you feel?” I said fine, I told her I couldn’t feel my leg, but I knew it was from the nerve block. She agreed and stated, “Yeah, that will last 24 hours and we will make sure we control your pain after that”.  I said, “OK.  I am tired.” She said I would be and I would probably go back to sleep soon. Then I asked, “How can it be 6 p.m.?” She said the surgery took almost 8 hours.  I replied, “But it was supposed to be 2”.  She said yes, but some things needed to be done and it took some time. I then asked if my parents and Amanda were still here and had they waited all that time? She looked at me, smiling, as she said yes, and assured me they were on their way to see me.

Just as she said, my parents and Amanda entered the room as she left.  My dad said it took a long time, because the doctor wanted to get it right. I asked, “Well what about all the surgeries after mine?” Dad stated he assumed they had to reschedule them. I felt bad immediately.  I couldn’t imagine how those people felt, waiting in the room to be called back and then finding out they needed to be rescheduled. I felt awful about it.  Amanda stated not to worry about it now. My parents, seeing I was OK, stated they were going to go home and rest and would come back down whenever I was ready. I gave them a hug, and they left.  Amanda sat on the chair beside me and I was starting to feel drowsy again. I told Amanda to hand me my phone.  I made one phone call that day and it was to my district manager, my great friend, the gentleman who gifted me with a Mickey Christmas sock, Mr. Brad. I spoke to him a few seconds and handed the phone to Amanda while he was still on it. I heard her explain the procedure to him and was told there were pictures that in the near future I refused to look at. As she was hanging up with him, I once again hung up on reality. The darkness of sleep overcame me and I was out.

A few hours later I found myself in bigger room. There was a bed to my left in which Amanda was sleeping.  My first thought was how much better that was than the uncomfortable chair they gave her following the last surgery at Penn State. I still couldn’t feel my leg, and by the darkness from the windows, it had to be the middle of the night.

I called for the nurse and asked for a drink.  After performing some tests she gave me some water and asked how I felt.  I told her I was still tired and going back to sleep. Before I did I noticed a sign stating TV was ten dollars a day. I laughed and thought; they give you a better bed for your friend, but charge you for TV. I think not. With that thought, I fell asleep again. I stayed asleep the whole night.  I do not remember any nurses coming in to check on me, disturbing my sleep like they did at Penn State. I was happy I did not feel pain, and I was happy I could rest.

As I woke the next day, I immediately wanted to go home. Amanda said she rested pretty well and asked if I felt pain. I told her no, but it was probably the drugs they were giving me.   I told her my toes were starting to tingle as the nerve block was wearing off.

As the nurses came in to verify I was OK, they started to send in multiple doctors to make sure I was in good condition before I was discharged. A physical therapist came in, and I sent her on her way after she helped to the rest room.  She earned a $300 charge on my medical bill for that.  I do not remember seeing Dr. Ficke after the surgery, but Amanda assured me I did and that he said it was a success. He stated the reason the surgery took so long, was that he wanted to get an exact fit from the donor cartilage and bone and it took a lot longer than he expected. I was honored he took that much time for me, he truly was a Wizard.

We called my parents to come pick me up, knowing that their two-hour drive would take as long as the discharge process. I put my woolly pants back on and was wheeled down to the car. My dad fitted his SUV in the back with pillows and blankets, so I could lie down and be comfortable.

After being loaded up, we said our thank yous and goodbyes to the staff, thanking them for their kindness.  As the door closed we were on our way. My mom started to ask questions, but could see I was already out.

I don’t remember how I made it through the doorway and up the stairs when we got home.  I was told I managed to crutch to the door.  I crawled up the steps – dragging my leg behind, and rounded the corner of the living room.  Hauling myself onto my chair, I sank into its pillows once again.

Afterword

Dr. Ficke really did everything above and beyond his call of duty.  The staff at Johns Hopkins was very nice, polite, and helpful.  Overall, I could not have asked for a better surgery at the time…  

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A picture taken right after surgery.  I finally felt like I was cured and after years and years of surgeries it was over…

Christmas With A Mouse Part 2 – The Story Part 26

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Finally, we landed and still had twenty-minute ride on the bus to the resort interrupted by drop-offs at other resort locations before ours, and we had to check in at our resort and pick up my scooter, with only an hour and half remaining before show time to see Cirque du Soleil. If the plane would have been on time we would have had four and half hours before show time when we landed.

When we arrived at the Animal Kingdom Resort, the view was astonishing. A large Christmas tree towered in the center of the room and every pole and banister was decorated with garlands and lights. I was truly amazed and taken aback by all the festive decorations and just the size of the lobby. I felt immediately pleased we upgraded to this resort, and the disaster of our flight was slowly forgotten as I looked around.  However, we had no time to take in all of the sights or even go to our room. Amanda ran to check us in and I slowly walked towards the bell check-in.  Thoughts of not having my scooter ready had me in a panic, but as soon as I was greeted with a smile from the bell hop I could see about five red scooters lined up in the back.

The bell hop processed my reservation with Buena Vista Mobility Rentals, and brought my scooter to me. I thanked him but waved him off, telling him I was already familiar with the controls.  I slowly turned around in it and headed towards Amanda at the front desk.

Luckily she was finishing up at the same time.  We quickly headed back outside to the left and down the walkway to catch the bus to Downtown Disney. We had about forty minutes to get there. The first disaster in Florida on our vacation almost took place immediately.  When I saw the bus we needed was approaching, I pressed the control lever down to full power to catch up to the bus. The scooter took off like a rocket down the walkway. I passed everyone walking by and thank goodness there was a direct line of sight to the bus with no one blocking. As I reached the bus before Amanda, I stopped the scooter immediately. The scooter bucked and leaned to the side with one of the wheels off the ground. I swore I was going to tip.  Only by the grace of God and after what felt like five minutes in the air on the verge of tipping, the scooter landed with a smack back on the ground. My heart was pounding and Amanda ran up in shock. I turned around and told her I never had a scooter with this much power before. We both were relieved that it landed back on the wheels, and the driver sighed and suggested he help me onto the bus.

It took five buses and five tries before I got used to getting the scooter up the ramp, pulling it forward and then parallel parking it into the handicap spot: so this first time the bus driver took the controls while I was still in the seat and showed me how to do it.

Avoiding disaster, I was buckled in, the rest of the people came onto the bus and we were on our way.    Disney is always amazing, but to see it for the first time at Christmas is truly an experience that I wish anyone who holds the season in their heart could see.  We pulled up to the bus station to get dropped off and I already saw trees decorated and the entrances all lit up.  It had already exceeded my expectations, but there was no time to truly enjoy it. Ten minutes to show time, and I was still buckled in on the bus as everyone else was getting off. Handicap scooters and wheelchairs are the first ones on, but we are always the last ones off, due to needing the ramp.

The bus driver unsecured me and helped me down the ramp.  As soon as the three wheels left the metal ramp and hit the cement below, I looked at Amanda and told her to hop on. Amanda took a seat on my good leg, and traveling at 8 miles an hour we whipped past everyone to get to the other end of Downtown Disney for our show. It was a lot warmer than home so the breeze was not bad passing our faces. We received a lot of ooohs and ahhhhs as I weaved in and out of people and down towards the building. I pulled off a few zig zags that would leave Richard Petty in awe. The scooter was straining under the extra weight, but it kept full power. We flew around turns going up on one wheel than falling back down, but with four minutes to spare we arrived at the front of the building with our tickets in hand.

Somehow, someway, after a four-hour delay of our flight we managed to get to the location just four minutes before the show started. As I was led to my seat and got off my scooter, I swear I could hear it breathe a sigh of relief.

The show was wonderful, Amanda and I loved it. I always enjoy shows like that.  After the performance we finally had the chance to breathe. We slowly made our way back. We were completely exhausted. We stopped at a few shops, but gradually made it back to the bus stop.

It didn’t take long for the bus to arrive, which can be a problem down there, and we both napped on the ride back.  For the first time we entered our room. It was big enough for our scooter, but not too much larger, but it was beautifully decorated. I took no time to look around and hopped into the shower.

As I was taking a shower, I heard Amanda shout with glee and surprise.  I yelled from the shower: “What’s up? What’s going on?” She shouted back: “We got a present, waiting for us here!” “A present?  From who?” “Umm let me see, it is from Brad!” she stated. “It’s from Brad!! Oh My God! How the heck did he know where we were, and what room?”

I hopped out of the shower immediately and dried off. The present was so nice. It was a Mickey Red Christmas Sock filled with goodies. The sock today hangs by our Disney souvenir case. I see it right now as I type this. Brad has always amazed me.  We immediately called him to thank him, and told him it was such an amazing day. Going through what we did, making it to the show, and now being treated to an unexpected present. It was all overwhelming – the feeling of joy and the spirit of Christmas. We thanked him and thanked him and said it really surprised us. We hung up the phone, looked at all of the goodies inside the sock, sampled a few treats, and went to bed like two children waiting for Xmas the next day.

The following four days were amazing. Each resort was decorated from top to bottom with Christmas decorations. I truly loved it.  I have always loved Christmas and kept it in my heart. Although Disney might decorate for commercial reasons, it truly felt to me Disney kept Christmas in their hearts as well.

We went on all the rides, watched the Christmas Parade, enjoyed the Osborne Lights at the Hollywood Studios, enjoyed the Mickey Christmas Party at the Magic Kingdom, and even saw LeVar Burton, from Star Trek perform the Candle Light Processional.  Those days were amazing and filled with the magic of Christmas. I will never forget them. It brings me peace just thinking about them.

There were two days remaining on our Christmas Vacation, before heading back to the realities of home and surgery. I was happy that I got to enjoy the parks and felt that I was being compensated for the time that was stolen from me on my honeymoon. If you recall I lost the last two days being stuck in the hotel room due to my ankle.

The second to the last day we woke up, and headed to the bus for the Animal Kingdom Park.  Fifteen minutes into the park I looked at Amanda and said, “I have to go back to the hotel. I am not feeling well.” Amanda was disappointed. It was only 10 am. She thought my legs might be in pain from the trip and conceded and told me to go back.

I scooted on and off the bus and headed towards my room on my scooter at full speed. I was starting to feel violently sick.  As soon as I entered the hotel room, I ducked into the bathroom and spent a half hour there. It felt like all of the life in me left my body. I fell to the floor and turned on the shower to the hottest setting. All of a sudden I was freezing.

I must have passed out in the shower, because when Amanda entered the room two hours after I had left her,  I was woken up by her screaming “What the hell!!” She opened the bathroom door and steam billowed out into the rest of the room and filled it. You could not see. The steam was thick and covered the air. She helped me out of the shower and onto the bed. Sweat started to form on her forehead from the room being so hot, but I lay on the bed shivering. She got blankets and covered me up and went down the lobby to buy medicine.

An hour after I took the medicine the shivering stopped, but I felt horrible. I just wanted to rest, but that afternoon the pounding of drums echoed in the room from a show in the lobby. I was so sick that I could not move, I could not sleep, it was awful. Once again Disney got the best of me. I spent the last two days in the hotel room sick as a dog.  Amanda had to enjoy the dinners and parks without me once more.

I lost at Disney again. This time because of a flu that overtook my body like it has never done before. I was never that sick in my whole life, besides the feeling of being ill after surgery. I do not know how I made it onto the bus and onto the plane and back home, but I did. It was all a blur.  I was in and out of consciousness on the return flight.  I remember getting back on the wheelchair and seeing my parents faces go from joy at seeing us to concern over the way I felt.

“That’s a shame”, came from both of my parents, and I just waved a hand at them. Amanda assured them I enjoyed myself the first few days. On the way back home they all agreed that I must have caught something the first day.  Since I was no longer used to being around people I was probably highly susceptible to any virus. In the car I vowed from that day forward I was going to get a flu shot every year (which I have) and that would return to Disney to enjoy a vacation for the entire booking! I was 0-2 for enjoying a full vacation at Disney, but as I look back, I still won. I did enjoy my time with Amanda when I felt good. The lights were amazing and impossible to describe. Thinking of the surprise and joy of finding our present lying on our bed, and all of the shows we had seen before I got sick, the trip was definitely a win.

After we arrived home, Amanda and I were both depleted of energy. All of the bags and souvenirs would have to wait till the next day. We both immediately went to bed to energize and prepare ourselves for the upcoming surgery.

Afterword

I cannot begin to describe or tell you how amazing it was down there. Everyone knows I love Christmas.  It is Nov 15th today, and my decorations in the house have already been up for 14 days. Brad’s gift of the Christmas sock hangs from our cabinet and reminds me of the fun and the trials we had to overcome at Disney.   Though I did lose the last two days of the vacation, it truly was the best I ever had.

I want to thank Ms. S once again for everything.  It is hard for me to write my blog entries at this time due to some issues that will be discussed later.  I write them very fast and she spends a lot of her own time helping me correct the entry while keeping my voice.  It is truly appreciated. 

I also want to ask people to follow and share my blog. You never know who might benefit from it. What to expect at appointments, recovery, surgery, and soon how to handle insurance denials, claims, fixing medical record reports. Once I catch up with the story, I will share reviews on equipment. Almost every time Amanda and I go out people ask about my scooter. So, please share, help me get the word out. I want to give back, but I cannot without your help.  I want to thank all of my followers the new and old from the bottom of my heart, thank you.

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Our Disney gift from Brad, empty after enjoying all our treats that were inside.
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A magnificent view of the entrance to the Animal Kingdom resort.  It is easy to forget your plane troubles when greeted with decorations like these.
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LeVar Burton, from Star Trek and Reading Rainbow performing at the Candle Light Processional.