Month: March 2017

Hand Controls Part 1 – The Story Volume 2 – Part 2

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It took many weeks and even months to go through, understand, and appeal the Explanation of Benefits to the person that was helping me.  It took even longer for them to be reprocessed and to receive a check that I could put towards the medical bills that were piling up.

Between the bills, needing to recheck each and every one of them to make sure I owed that amount, I was starting to feel exhausted and stressed out.  To help Amanda I was also handling all of the finances, bills and investments. Anything at home that didn’t require an exorbitant amount of movement became my responsibility. Some chores had already been my responsibility but now became physically draining.

The pain kept increasing, and my pain manager increased mydoses of narcotics. They certainly helped, but they made me more dizzy and drowsy giving me less and less time to handle anything at home. This put more pressure on Amanda to get things done, and to continue working to support both of us.

During the coherent times, when the bills were taken care of and my home duties were done, boredom was setting in.  Our house is not the biggest, I spent most of the time in a chair in the living room which is small. As each day passed the wall my chair was against seem to lean forward over me and the wall on the other side with a small aquarium on top of it seemed to move closer and closer. My living room was starting to feel like the size of a Cracker Jack box.  Before things got worse I knew I had to have some type of change, but I was not quite sure what it was going to be, until Amanda found the answer, that I already knew but had forgotten from a suggestion Brad gave me many years ago.

Amanda was browsing medical articles on the internet and found an article on hand controls for your car. She looked at me and said, “You need these, so you can get out of the house when you’re not feeling drugged or tired.” It took a minute to process, the aspect of regaining my freedom would be incredible. I spent most of the past years having to rely on her, parents, or friends to get me out of the house. It sounded all too grand.  I looked at the article and I told her I would start doing research right away.

The next day, as luck had it, I found a mobility store only two miles away. I wanted to gather information on hand controls and the cost of the items. After fifteen minutes of waiting for the salesperson to get done, he came over and ask if we needed help. I explained to him my situation and he walked over to a stand and offered me a flyer. He then asked what car I drove. I told him a compact car, he looked at me and the car outside and stated I would have to buy a new car. He then excused himself and went to the back, but before he did he told me I would have to pass registration for Penn Dot to use the equipment and stated there was a place in Hershey.  He gave me no name and he did not have information on how much it would cost to install at his own location. The balloon of freedom almost popped.

Once we got out to the car Amanda and I agreed we were not going to deal with a person that treated us so dismissively. According to him I needed a new car,  I knew he was wrong because I already researched that information.  He then only gave me a flyer about the product, and he had no information about training for registration. However, I had enough material to research from the flyer and ask about hand control training, so our effort was not all wasted. All I knew, is I was not going back to them. For a salesperson who works in a facility that sells equipment to disabled people, he did not show any empathy. It was as if he were questioning the genuineness of my disability, considering how he was treating the customers that were 70 or older. It left a bad feeling in my stomach.

I shook the feeling by the time we were home, and took the information that I was able to obtain to start my research. The first thing I needed to know was if insurance would cover any of the costs. The second was to find a school to learn how to use hand controls and learn how much that was going to cost. The third was to find a facility to install controls and show me which ones I needed. Once again, I found myself a purpose.  To get back some freedom I lost.  It was the only thing on my mind: freedom, and get out of these four walls when I can.

I started my search of hand controls on the internet and found the facility in Hershey they were talking about. I quickly picked up my cell phone and called with paper and pen in hand to take notes. It rang four or five times until someone picked up. The young lady said she did not know much about the scheduling because the person who was supposed to be there was not, but she could tell me the cost was $150 an hour with about an 8 hour course and an assessment of my capabilities of $800.  My heart dropped.  That was $2000 just to learn how to use the controls! And then the knife went in. She perkily stated, “Insurance usually does not cover this.”

When I hung up the phone, I struggled to breathe. Another $2,000 on top of the $20,000 I paid for out of pocket expenses, deductibles, out of pocket maximums and physical therapy over the last eight years for six surgeries that did not work. I could have cried then and there, but I sucked it up and made my next phone call.

The facility I called was $120 an hour with an $800 mandatory assessment. I felt a little better: at least it was less. Than I called the last facility on my list. Genesis Rehab Services.  A wonderful-sounding lady picked up and stated she would love to help me learn controls. She also stated at no cost they would come to my house to pick me up. I thought that was a great advantage.  I then asked her for the cost of her services.  She revealed it would be $100 an hour with a 4 to 8 hours of total sessions divided into 1-hour daily sessions so the person does not get tired, and there would be a one time fee of $800 for the assessment performed by her. She added she would help with everything I needed and stay by my side until the controls were installed in my car. She then said to get started she would need a doctor’s note and we could schedule the appointment. I told her that sounded great compared to the other ones I heard. I just had to talk it over with my wife and call the doctor to get the note. We both said our goodbyes and with this knowledge hope entered me once again.

Making the phone calls was like a roller coaster, my stomach kept going up and down learning about the costs, but knowing that this company could pick me up, an offer the others ones did not mention, was the biggest plus. I then called my doctor and with no arguments a script was faxed over. For a second I wondered why they had not suggested I get hand controls to help regain my freedom, since they were so willing to write the script, but I got rid of any negative thought and went back to researching companies that could install the parts in my car.

The first company I went to would not do, so I called the second one I found on the list and learned it was also right down the road. When Amanda woke up and went over everything I learned, she agreed it would be quite the expense, but worth it for me and to relieve some stress from her running all the errands. We went to the company that was much different from the previous one. We entered Total Mobility Services and were greeted by a pleasant woman in a wheel chair named Ann. She went over everything:  How the installment was done, my options, and even took me out to her car to show me the hand controls in her car.  With pamphlets in hand, and a lot more knowledge, she handed me a quote of $1,635.00, which was also not covered by insurance. She agreed with my frustration over why the insurance company would not cover devices to help people regain their freedom, but they did not. I thanked her for all her time and told her when I pass my tests, I will be back.

The research was over, and with a quick phone call to the insurance company, I did learn what I already knew and that was, I was going to have fork over all of the money myself. The government did have a plan to help with the $800 assessment fee only, but Amanda earned too much to qualify for it, but none of the other costs would have been covered anyway.

Ann confirmed that I was lied to when told I needed to replace my car because the other company only sells one type of control and if it did not fit your car they told their customers they needed a new one. She also knew of three people that fell for that pitch. She stated that here at Total Mobility Services they sell all types to fit any car. My heart went up and down as I learned of the costs, and I found myself at a crossroads, do I spend $3,000 or more? I always thought I was going to get better over the last six years. I never did, and after $20,000 what is another $3,000?

With my decision confirmed, I called Susan back at Genesis Rehab and scheduled my appointment…


This was truly the first time I was doing something to regain my freedom that I knew would work, if I tried hard enough. The surgeries were not in my hands, they were in the doctors, but this, this was under my control, and I was going to pass.

I was getting use to being chauffeured around everywhere.  I must say in style too, lol.


Pay Me What’s Mine – The Story Volume 2 – Part 1

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Before I get started, as I stated in the prologue, the first 6 years were easy to write about. I have medical records to help me with chronological order, and it was very easy to remember surgeries and how I felt, and the impact on my life and family. However, after the six surgeries and the remaining two and a half years until the present that followed, things became a little jumbled in my mind. I wrote a list of things that have happened and put them in order the best I could. If I repeat myself I apologize. As stated, I am having trouble getting started with this second part. So, I have decided to take my dad’s advice: “If you do not start you will never finish.” Using that advice, here we go:

This is going to be me , I know it is, This is my new existence, I am going to be like that,  I thought as I watched the television. “What if I can’t get up and walk or exercise, I need to at least do floor exercise, I have no choice.” . My pain pills make me tired and dizzy, I only have an hour or so of time before my next pill where I feel a little coherent, but the pain also uses this time to resurface. I cannot exercise like I used too.  I am stuck, the thought echoed through my mind. Horror clenched every thought.

 As these thoughts were flowing through my head, Amanda was sitting beside me playing her game. I could tell by the way she would peer over at me that she knew bad thoughts were going through my head. My attention was towards the TV in front of me. On the screen was a person who was depressed and couldn’t get out of bed.  Every year he grew bigger and bigger, until he reached 645 pounds. I don’t know why I was so captivated by the show, but I watched it all the time.  My 600-lb Life was supposed to be a motivational reality show, showing people who were heavy and did everything they could to lose weight, including surgery by a doctor in Texas. However, to me it was a horror show.  As the people on the screen were turning things around, I was going in the opposite direction, I was going in the direction that confined them to their beds.

Amanda saw the dread on my face. I saw her pause her game, turn and yell, “That is not going to happen to you, you do not eat that much! You need to watch something else.  I would not let you get that big. You may gain a little weight, but you’re not going to gain 400 pounds!” After her rant, she turned back to her game in a huff. I turned my head back to the TV and finished watching the show.

It was that show that put me on the ground. I started doing the exercises on the ground until the pain overwhelmed me. I usually performed the exercises that I learned from physical therapy. At least it was something, and after a few weeks, I felt my mood lighten up and was less depressed, as I was no longer being held captive in my chair.

My enlightened mood had me looking for other things to do. Things that would give me the feeling of accomplishment. People suggested that I should work from home, however I was so dizzy and tired most of the day, that I would not be dependable to the employer, so I knew that road was not open to me. If I couldn’t give my 100%, I did not want to do it. As a few days went by, I started getting Explanation of Benefits documents in the mail and bills from the last surgery. Explanation of Benefits (EOB) are the forms that show the procedure that was done and how much the insurance covered (I plan on doing a whole explanation on howto read them once I am caught up with the story) and how much the patient would have to pay. It also states in big bold letters: THIS IS NOT A BILL.

Over the last six to seven years we spent over $20,000 in deductibles and out of pocket maximums. I never gave a second thought to those EOBs that came in the mail, I just paid the bills as they came.  One day, I remember Amanda bringing in the mail and laying the envelope from the insurance company on my lap. As normal I opened, and quickly glanced at it. However, this time it said: “Denial of coverage”. It was for my surgery!  I called the insurance customer service center and an employee on the phone told me Johns Hopkins processed it incorrectly and that is why it was denied. I then called Hopkins, they told me over the phone that they did process it correctly. I found myself between a rock and wall. Hopkins told me this after I called my doctor to let him know that my insurance company told me that his billing department is charging an outpatient procedure as an inpatient, and I was calling him to make sure he gets paid. I called my insurance company again and asked them to look at the procedure and processing from the EOB again. After being put on hold they gave me the same answer, they stated that the charge code that Hopkins was billing was incorrect.  By then, what seem like hours on the phone, I was tired. I decided to let it go for a few days in hopes it magically fixes itself.

I called the billing manager at Johns Hopkins, and she stated that they are not processing the claim as inpatient surgery.  She asked me to hold while she contacted a billing manager at my insurance company.  After ten to twenty minutes on hold, my Hopkins contact said the claim will be taken care of, and that she had no idea why I was told Hopkins had filed improperly. She even stated that the insurance company contact stated the same thing.  I thanked her for her time, and handling the issue that could have cost thousands of dollars if it was not fixed.

I had the time and needed the distraction, so I decided to look through all of my claims online for the past year. I noticed that there were over 7 processing errors. I immediately called the insurance company’s customer service line.  The woman on the phone stated that the billing department will be notified, and apologized. I told her that I am on drugs for my pain and I am figuring out these mistakes versus people who are getting paidto do the paperwork. If phones could still be slammed down, I would have done it after the conversation

After another week went by and nothing was reprocessed as promised. I sent an email asking for the CEO. I did this because talking to the company representatives was not getting me anywhere. I was tired, dizzy, in pain, and I was at the end of my rope.  Not only was I thinking about the money I overpaid due to processing errors, I was frustrated and concerned about how many senior citizens were facing the same thing.

Within the hour, I received an email stating that they do not give out information on the CEO. I was livid.  What kind of nonsense was this single-line answer?  I sent an email back stating that my the CEO of my old company, had an open door policy.
I struck back another email stating that I will find it on my own. It only took twenty minutes to receive an email providing a phone number for a person with a vice president title I could talk to.

I called and spoke with  her. After weeks of going back and forth with the insurance company, I finally found someone that would help me. She promised she will would get to the bottom of it and she will would have a senior processor look into it.

A few weeks later I started to see things being reprocessed at a Tier 1 level instead of a Tier 2 or denial. The lower the tier of a procedure, the greater the insurance payments were and less patient responsibilities.  At one point in time before I spoke with the vice president, I had an employee agree that it can be confusing.  I again expressed my concerns about the ability of senior citizens to review these documents; and shared my lack of understanding how mistakes were being made by insurance employees that I could detect – while less lucid on pain meds.  I literally learned codes and how to process items throughout the weeks.

After everything was reprocessed, one had to be reprocessed three times, because I kept noticing it being processed wrong, there were 12 claims that had to be corrected.  Over $700 was owed to me. It only took a few weeks to receive my check from the facility that was overpaid.

I thanked the vice president for all of her efforts and stated I wish it did not have to go as far as it did, but I was on a strict budget and need every penny I can get. She apologized and told me to contact her anytime.

It really  wore me out making all of those phone calls, but I fought it. It gave me something to focus on at the time. It literally took me out of the black hole and gave me a purpose again. Now that it was over after a few months I needed something else, but that would have to wait.

During the reprocessing, emails, and all of the phone calls,I noticed something that was unexpected. I started getting pings of pain up and down my right and left leg at the same exact time. I told Amanda it must be the deterioration of the left ankle Dr. Treaster told me about, and my battered right ankle. It was just odd that the pings of pain were in both legs at the same time, never just one leg at any time. Maybe I did too much that day or maybe it was from stress, but for now I was happy with the outcome of the insurance battle and I was tired of doctors offices. I left it go and turned my attention to something I had put off for a long time since I had assumed I would be getting better – hand controls for my car. It was time to get some freedom back…


I sent a lot of emails to both facilities and made a lot of phone calls throughout the two months. It really wore me out.  I only had a few hours out of the day I was coherent enough to get this stuff done. I did not want to bother Amanda with it. She was doing too much already taking care of me and working. But it woke me up and got me out of the dark, that I am thankful for. I am now on the second part of my journey; I can’t wait to tell you what is happening now we are almost there…

This was a very difficult entry to type.  I will tell you the reasons in another blog entry.  Please forgive any typos or grammatical errors.  At this time, it is very hard to type, and I am doing my best to continue the story and Ms. S is doing her best to understand my ramblings as I am under the influence of heavy medication as I type.

Thank you again for your following my blog and joining me on my journey.  If I believed this journey did not have a happy ending I would not be typing it, but soon you will be joining me on my journey as it actually happens in real time.  I know we can get through this.  I take this thought and keep positive.  For now, please forgive any errors.

Thank you again.

Even from all the pain I was feeling, I always try to endure it and make time for Amanda to wind down.  Amanda deserved to enjoy time away from all of it.  With the mobility scooter, and Amanda by my side, I was able to do so for a little while.  Amanda  was and still is very good at controlling my pain away from home for a day vacation once in awhile.


The Story Volume 2 – Prologue

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I am honestly beginning this too early, but I want to start writing it. I finally finished writing about the first 6 surgeries. I lived with those surgeries and the experiences in my head for a very long time. To get them out for others to read and for me to share feels like a weight lifted off my shoulders.

After the sixth surgery and the final appointment with Dr. Ficke it took a long time to bounce back. I sat in my chair for months in pain.  I went to the pain manager and got pills to help me cope with it, along with a tens unit. I adjusted my life little by little as things felt worse. Each month it felt like I had to give up an activity I enjoyed. I was in a really dark place. If it were not for my family and the friends I had left,  I could have fallen into a dark pit and might not have gotten out. My determination to find a solution for the deterioration for my ankle and pain was gone. Though I still remained strong physically, I felt like a piece of blubber on my chair. My worst fear went from being in pain the rest of my life, to becoming 600 pounds, thanks to the TV show My 600-lb Life. I truly now had three worries: my food intake, my pain, and my loss of activities.

Things were looking grim, but if it had ended then and there, I wouldn’t have to continue writing. What happened from surgery 6 till now, a total of two years, was more challenging than the last 8 years combined, that was discussed in the first volume of my blog.

During the last 8 years I was a follower. I did what the doctors told me to do.  I did everything they thought would help me, but nothing worked. After going through that dark time that lasted a few months I came out of it stronger. These next two years I became the leader of my health. I was no longer the follower.  I was transformed.

In the next few entries I will tell you the story of how that came to be.  Unlike for the first six surgeries, it is very hard for me to put things in chronological order, because everything feels like a whirlwind. I promise the entries will be true and accurate, but it may take a week or so to organize my thoughts.

Please wait, it will be worth it.

The journey is not over, not even today.

Thank you.

The fight, the fun, and finding hope is not over yet.