hope

Hope, Keeping Hope, Scared of Hope – Moving On – 1-13-18

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Most of the blog entries I have written were stories about my life.  The entries covered the events, adversities, and obstacles that I faced throughout my journey.  In this entry I want to talk about the emotion of having hope.  I want tell about the emotion of hope and disappointment and the tug of war battle that has plagued my mind since my story started almost nine years ago.

It took over a year for me to summarize the last nine years of my story in my blog.  I want you to stop reading this and take a minute and think of all of the events in your life that have taken place over the last nine years.  I know many people have had children, changed jobs, bought a house, moved out on their own for the first time, gotten married, and even gotten a divorce. I want you to think about all of the events and all of the times you had hope, happiness, and sadness.

In the last nine years, I had one dominant thought in my brain.  One emotion throughout all of the years in my 30’s.  That thought was: Hope.  I was hoping to find a cure. I was hoping that eight surgeries would give me relief.  I was hoping when the doctors told me during the first four surgeries that I would be 100% afterwards, that I would be.

I had a lot of experiences during that time. I went on trips, embraced new friends in my life, even a few recently that live overseas in the UK.  However, during all of these events my hope dominated my feelings.  I used my hope and determination to squash the disappointment of the results I bore. The disappointment of learning the doctors were wrong.

I battled time and time again to increase my strength in my legs, feet, and back in order to walk without pain.  A year would pass between surgeries until I would know if I was healed or not.  After each of the four recovery years I carried the weight of being disappointed when I felt the pain coming back stronger and stronger each time.  Hope helped me push back the weight of disappointment when the next four surgeries failed even though I knew they had a lower percentage of chance of helping me.

It was hope that kept me going when I would have good days – days where the pain was a lot less.

Days where I could do things and feel that I was getting better gave me more hope.  That was until the next day in which my body would scream at me from the inside because I had pushed myself too much during those good periods.  Days when I succumbed to the pain and lay on the floor for a week in hope of getting rid of the pain that gripped my body.  It was during those days that hope of getting better started to flicker out of my life.

It took months of struggling with myself to adjust my thought process, and help from my friends to redirect what I should be hoping for. Instead of hoping for a cure, I learned to appreciate the good days.  Instead of becoming depressed when my good days ended and were followed by bad days recovering from over-activity, I learned to enjoy the days where the pain was less.  I did not push myself harder on the good days. I stuck to the same routine and relished the fact that that day was almost a pain-free day and I hoped that I could have more of them.

If I did not adjust my outlook on life and change my goal, I knew I would be battling disappointment the rest of my life.  Over the last few months I became resigned to my situation.  I survived through the horrific days, I cherished the days where the pain was less and I kept hoping that life would stay about the same and not get worse.   It was not much of a life, being in a lot of pain everyday.  But it was the best my friends and family, doctors and I had to offer . . .  so I decided to make the best of it.

Months passed where each day felt like the film Ground Hog Day, and that was fine.  No more surprises!  I preferred that after years of not knowing how I was going to feel or how my body was going to end up after surgery.  Days without surprises and keeping my hope in check were just what I mentally needed. I felt resigned even though there were days I had crippling pain overwhelming my whole body.

Tolerating my situation lasted a decent amount of time.  That was until two days ago.  I was lying on the floor for pain relief, and turned on the news.  On ABC 27 they stated they were having a special in a half hour that would cover a new procedure. A new procedure for people with Complex Regional Pain Syndrome!  A new spinal implant procedure for people with this condition that had leg pain or ankle pain from multiple fractures!!  It was as if they pulled my medical record out, were reading it, and sharing how the new procedure could help me.  I had never seen anything on TV about my condition let alone a new procedure.  I turned to Amanda who was sitting on the couch, and pointing to the TV like a kid pointing at a new toy being advertised for Christmas, I yelled, “I need that! One please!  Crack my back open, connect wires to my brain, I don’t care – give it to me!”  Even Amanda was impressed by it, which is not easy to do, and stated, “This might really help you.”

The news program was offering a phone number and an email address that people could use to contact the doctors.  I instantly grabbed my phone and wrote a page about my condition.  It took less than ten minutes for them to get back to me stating that they could help me.

At that moment fireworks were exploding inside of me.  My feeling resolved once again bloomed to having hope of a cure.  It was the first time in a very long while I was completely happy and looking forward to the future instead of hoping for the next day to be less pain-filled.

The following day Amanda called their office and secured an appointment for the 6th of February to talk to them about this new procedure.  She then called me, during a break from work, to let me know the date of the appointment and told me to let my dad know, knowing he would want to be there too. I started having instant regret letting my emotions rise and having hope once more.

As I sit here typing this, once again I am excited for the future.   I did not want to set myself up for disappointment.  One of my close friends in Virginia played devil’s advocate, saying the procedure might not be approved or good for me.  She asked, “What if it makes you worse?  What if the pain is unbearable like last time?”  Her questions were on point.  However, I could only answer with excitement.  I rattled back, “At this point let them cut me up and keep trying.  Something has to be better than this. I don’t care, I have to try it!”

After spending months and months retraining my brain to adjust my expectations, I am setting myself up for another huge case of disappointment.  It was something I did not want to go through again.  I did not know if I could survive going through it again.  For the first time, Hope has me scared, and I wish I did not feel it.

I would love to know your thoughts.  I would love for you to respond to me in the comments section.  Would you have hope, if so would you keep it in check?  How would you keep it in check?  Would you take the risk of setting yourself up to be hurt and in pain even more after finally accepting your condition?  I am going for it, would you?

 

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It would be amazing to go back to being this guy.  Two days before all of these events took place.  Two days before an ankle would give out walking back to the hotel.  I can’t hope to regain the last nine years of my life I spent looking for a cure and going through an onslaught of operations, but I can hope to feel like him once again.

09.27.17 – The Fight For The Future – The Story Volume 2 – Part 10

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The temporary spinal simulator implant was taken out and what followed was close to a month’s worth of intense pain.  The pain in my legs persisted and the burning, squeezing, and thumping pain in my back echoed throughout my body as I lay on the floor waiting for the permanent implant.   The doctors warned multiple times the implant would be stronger, but my body might get used to it and the effect of the implant may decrease, or even start at only 40% – 60% of pain relief.  I knew there was no chance of 100%, but as I lay on the floor drenched in pain sweat, I knew 100% pain was getting to be too much to handle. Contemplating living the rest of my life with this was becoming a dark cloud over my existence. I started looking at the clock as a slow timer counting down my days I had left.  Days left  in this world of torment or until my permanent spine implant would be placed I am not sure, but it was more likely both.

Amanda and my parents took over almost all of my duties around the house. I could no longer stand or cook.  I tried making eggs for breakfast one time letting Amanda sleep in on a day off, but my body would not let me stand by the stove for 10 minutes.  I remember looking down at the pan, distraught, and felt the emptiness of failure as I tipped the pan towards the trash can and took my place on the floor by the television.  I somehow managed to get by letting the days and nights slip away as I marked them off on the calendar.  Though just a few weeks, maybe a month had passed, it was the longest time of my life.   Going from the feeling of relief from the temporary implant, to being thrust right back into pain upon it’s removal was too much for anyone to bear.  The only solace  I found was lying  on the floor watching the colors dim in front of  my eyes and falling into a nap brought on by my pain pills.

I struggled and fought through the days that remained.  Amanda reassured me that it will be better soon, my parents kept me company when she was at work, and my sister took time out of her busy day to visit when she could.  My friends from Virginia and close to home took on the burden of letting me vent on a daily basis and Ms. S tried to visit on a regular basis.  They all took it as normal as I Iay on the floor when they visited.  Not one made me feel uncomfortable as I lay on the floor looking up at them on the couch.  It was the warmth from them that helped me get through this dark and desperate time.

As all hope of finding relief from the crippling pain was being extinguished, the day finally arrived for my permanent implant.  It might have been a rush of adrenaline or the excitement of relief, but I was up, dressed in sweat pants and a loose shirt, and was ready to head out the door first thing in the morning.  Amanda and I arrived at the hospital and I was immediately called back.  I had told my other family members that they did not have to come as the procedure would not take that long.  I was excited and relieved to get the surgery underway.  As the routine began for pre-surgery I met with the doctors lying in bed with an IV in me.  Each of them went over the surgery and what they were responsible for.  It was like the movie Groundhog Day.  Through surgeries 1 to 8 no matter what hospital, it was all the same.  It was a relief knowing the pre-op process was uniform in all the hospitals in which I had been a patient, which soothed my nerves.  In fact it was that I was more impatient to get the procedure underway than I was worried about anything going wrong.  Heck, at this point surgery was more routine than going to the dentist for a filling.

After an hour had passed, lying in the pre-surgery room, I gave Amanda a kiss and told her I would be back in a snap.  As the nurse wheeled me off, I turned my head and told the nurse as I had many others before her, “When you put me to sleep just do it and do not let me know.”

True to the request, the next moment I found myself struggling against the weight of my eyes to open them up.   It was like being in a deep sleep and having someone trying to shake me awake.  Before I could even open my eyes I heard a woman to my left ask “Do you feel this in your leg?”

As the question was being processed in my woozy head a sensation of pure bliss entered my body.  I felt electricity throughout my leg.  The sensation was the feeling of tiny little hands shaking and massaging my legs interrupting the pain.  It was finally over, the waiting was done, I had my implant.

Feeling this warm sensation I fell back to sleep.  My next coherent memory was finding myself back in my chair with a familiar remote in my hand that connected to an antenna in my spine.  Off to my left, sat the most supportive woman in the world: my wife Amanda.  She smiled and welcomed me back into the world of living.  She told me they had tested both of my legs and my back.  She said I was out of it, but was able to respond to questions.  I told her I did not remember anything except feeling the first surge of  electricity coursing through my body.

Back at home, I rested the remainder of the day into the next.  Amanda told me most people do not have a lot of pain after the surgery.  It seemed to be true as I was not having too much pain certainly with the pulsing sensation rippling through my body provided by my implant.  At least that was until I tried to get up to go to the bathroom.  I put my arms on the arm rest of the chair to lift up and out of my molded seat on it.  What came next was the feeling of a knife slashing cuts across my back.  I howled in pain with such force that it seemed to lift Amanda off the chair and push her in front of me.

“What’s wrong? Are you OK?”

“I can’t get up.  I can’t get up, my back it’s ripping!  I have to pee!!”

“Here hold on to my arm and lift.”

White light entered my head as I succumbed to the pain.  I fell back into the chair, sweating and panting, pleading to her that I couldn’t.  What the hell is wrong, I thought.  It wasn’t suppose to  hurt.

“Call Dad.”

Without a question, Amanda called Dad, explained the situation, and asked him to come over.  Fortunately, my parents live only a street behind us.  Within minutes my dad was through the door and at my side lifting me by placing his arm underneath mine.

I do not remember making it to the bathroom, I do remember being drenched in sweat and the feeling of my back being stuck against the back of my chair.  It was as if my body moved forward, but my skin was stretching all the way down the hall – still attached to the back of the chair.  Something I have only seen in a Nightmare on Elm Street movie.

The pain was caused by two big incisions in my back.  One for the electrode that was soldered onto my nerves in my spine, the other was for the box that controlled the input from the remote to the electrode.  The scars were long and deep.  I still have them today which as I write this, is a few months later.  Any doctor or nurse who could say the pain would be minimal is a doctor or nurse who never went through it.  Amanda and my parents had to come over and watch me at all times to help me lift myself out of the chair so I could go to the restroom.  I broke out in pain sweats each time,  but I had no choice but to press on.  It took three weeks before I regained the freedom of lifting myself out of the chair without the feeling of my flesh being ripped from my back.

As I healed, I learned how to use the remote to the fullest potential.  It really helped with the pain in my back and legs, but as each week passed I noticed my old friend coming back again.

Pain.  Pain was my old friend.  It would not leave me, I could not hide, it would not give up being with me.  It refused to leave.  It would press through the electricity, it would jump over the waves of pain pills that tried to suppress it, it would stop at nothing to be with me.  Out of all the loyal things that surrounded me in my life, Pain was one friend I could always count on to be there.

The implant worked and it helped, but just months after receiving it, Pain, my friend, found a way through it to join me.  It did not take long to find myself on the floor again and Pain was there – enveloping me and tormenting me with its claws.

The electricity from the implant flowed through my body like a sword that fights Pain to this day.  It is a war between good and evil that battles inside me .  There are days where light overcomes darkness and there are others where darkness conquers all.   I know without my implant, darkness would be victorious everyday as the pills were never strong enough by themselves.  As we near present time, I had a few days that were so bad I called and pleaded with my doctors for help.  To me it got to the point where my doctors seemed helpless.  One increased my dosage of one pill, another encouraged going to see my pain doctor, and my neurologist had one idea left in him – and that was to prescribe another nerve medication called Trizanidine.

I have been on the new medication for two weeks now.  I am pleased to say Trizanidine is the glue coupled with my other medication that has created a shield to go along with my electric sword.  It has provided me protection from the worst of the back pain and although it has not defeated pain, for the first time it has held it at bay and stopped its progression.  I still have very bad days, and I find myself on the floor most days stretched out, but this new concoction of drugs plus my implant gave me enough arsenal to keep fighting.

I have scheduled next month to have all new doctors look at me.  I have put the last year of medical records and radiology images in a three ring binder with tabs separating the body parts that were tested.  I am hoping to find a doctor that has another option besides pills.  The pills make me drowsy, fatigued, dizzy, and incoherent at times.  I was able to get off one of my pills with the introduction of Trizanidine, but I know without the others I would lose the fight.  For the first time, I found a doctor that specializes in Complex Regional Pain Syndrome.  I have hope once again as I fight with the support of family and friends to regain my freedom from my darkest friend that resides in me: PAIN   

Afterword

It took over a year to tell my story.  I will continue to tell it as my life goes on.  I still have hope to be relieved from this torment.  When I started this journey I had all the hopes in the world that I would be cured by now.  Certainly when I learned about the implant.  I was determined to end my blog on the highest note possible with a cure.  It wasn’t until only a month or so ago I learned that my blog would not end that way.  Instead it ends with hope.  The second best ending that I could ask for.

I want to thank my family and friends that gave me support on this journey.  Amanda has been the strongest ally in my fight next to my parents and close friends, which I am lucky enough to say includes a lot of people.  I am hoping you guys know who you are.  I also want to thank my readers and those that will continue on my journey with me.

Your support will give me the strength not to give up and the motivation to continue fighting!

From here I will finally be able to expand my blog.  I plan on writing reviews about medical equipment, educate readers on insurance and benefits, and continue to spread my knowledge and hope to others.  I started this blog to help pay it forward.  I want to share a little insight with people who might be going to a test for their first time, having a surgery for the first time, or dealing with chronic pain the first time, on what they might be able to expect and to let them know they are not alone.

Thank you everyone for making this possible and the next entry will be soon!

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Thank you for joining me on my journey this far.  There will be a lot more content and stories to come.  Please share my blog if you can.  I just want to pay it forward to anyone that might benefit from my story.  Thank you again!

 

Hand Controls Part 2 – The Story Volume 2 – Part 3

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I was nervous about my first appointment.  I was not sure what to expect.  No one really told me about this service, so I had no idea what we would do to get started.  The only thought I had in  mind is that I would learn the lessons fast, so I did not have to spend even more money on them than what I already planned to. Delete to All I knew at the time is that it felt good to know that my money was going toward something that would help me regain freedom.  I had dumped a lot of money into surgeries that did not work, but this time I knew it was going toward something I knew would be successful.

Right on time at 8 am, the door bell rang and I invited in my instructor.  After a few pleasantries, we got to work right away.  The first part was the $800 evaluation.  The evaluation consisted of simple math problems, cognitive responses to questions, memory assessments, coordination testing, and visual testing.  I understood the reasoning behind the tests.  It was to ensure that people who could not see properly or think coherently, would not be driving on the road.  The company not only dealt with disabled people, they also dealt with people who suffered brain trauma, and they needed to make sure they were able to pass the simplest tasks.  However, I knew that I was okay and I could feel the money sliding out of my pocket for nothing.

After a quick assessment and review of my results, we were ready to go practice.   The instructor drove us to a vacant parking lot that was close to home to start the training.  She went over the three major car parts that were involved in driving with hand controls. The first was the pedal block.  It was a piece that attached to the floor of the car that blocked the gas and the brake pedal.  This provided a blockade for your foot, so it does not accidentally hit the gas or the brake pedal while the car was in motion.  The second was the steering knob.  The steering knob is a round knob about two to three inches in diameter that is connected at 1 o’clock in the steering wheel.  This bulb was to be used by your right hand to steer the car.  On the left side, toward the driver window was a bar that stuck out from the steering wheel.  Pushing this bar towards you with your left wrist was acceleration and pushing it down toward the floor board was the brake. It was as simple as that. I just had to get used to the controls and their response time.

It had been a very long time since I drove at all.  It felt that some of the chains connected to me and my chair were breaking.    I started slowly in the parking lot, making stops, starts, right, and left turns.  Playing video games for years must have paid off because the instructor stated that I was the quickest learner that she ever had.  She was so confident in my ability that she let me drive on the road and then out on the highway.  I did very well, only mistaking the push down for brake for acceleration.  After two hours passed, we arrived home.  I thanked her and told her it felt good to get behind the wheel.  She stated it would only need to take one more lesson before I was ready to test with Penn Dot to obtain my credentials for driving a vehicle with modifications.  I was thrilled comma and Amanda was happy with the enthusiasm I showed toward the whole program.

The next day I had to learn how to parallel park.  This scared me.  I had never learned how to do it properly in the past.  I flunked twice on my original driving exam, but the examiner gave my license to me anyway.

I waited in the car in the same empty parking lot by my house while the instructor set up cones to simulate a parking spot.  After she was done she joined me back in the car.  I think she sensed my nervousness, and told me she would work with me until I got it right, even if I needed to add another lesson.

After an hour of pulling forward and backing up, I was becoming very agitated. I needed to stop, we were not making any progress.  I was extremely frustrated at myself.  Something as simple as parallel parking was blocking me from obtaining my hand controls and freedom.

I entered my house in a very foul mood.  Amanda knew that this lesson had not gone as well without asking a question, and being as smart as she is, she did not.  I spent the night trying to find a tutorial video that was simple enough to understand how to park with ease.  After an hour of searching I found a video from a driving instructor on YouTube that seemed to make it super simple.  I was determined to try again with the new information I learned.

The next week, we were once again in the instructor car, with the cones set up.  I told her,”Watch this!” I pulled up next to the cone as the instructor in the video said and backed up just a little.  I then turned the wheel to the right one time and backed up until I could see the cone in the center of the window.  I then followed the next step of turning the wheel all the way to the left and backed into the space while watching the back cone.  Those instructions worked like a charm, and I was more than delighted.  I could also see the astonishment on the instructor’s face.  She asked, “How did you do that?” I told her I learned it from the video and showed her.  After performing it four more times flawlessly, the lesson and training were done.

We drove to and visited Total Mobility Services.  We went over everything I was going to need for my car and ordered all the parts I needed for installation.  With everything in hand all that we had to wait for was the date Penn Dot would test me. The earliest option was three months later.

Life went on during those three months, nothing had changed and the only thing on my mind was completing the trial at Penn Dot and regaining some of my freedom.  I couldn’t drive with a regular pedal due to complications with my right ankle, but if I could just pass this test, I would be able to drive with my hands.  I was more than delighted by the thought.

The day came, and right on time the instructor was at my door.   We were both excited and nervous.  She stated that she believed I would pass the test.  As we arrived at the testing center we put the car in line.  There were only two others that were in front of me.  I watched nervously out the window as I saw once one car having a lot of trouble parallel parking.  Sensing my nervousness, the instructor told me, “That is not you.  You know how to do it.”

After twenty minutes the examiner came to my car and the instructor left.  The examiner never had seen hand controls before, which baffled me, but she stated if I could prove I could drive with them it would be good enough for her. So, with that statement the test began.  I pulled up to the stop sign that was on the track and used my turn signal to make it to the area of parallel parking.  It was time.  I knew if I could do this, I could do the rest.  I took a deep breath and followed exactly what the video showed me.  I slowly pulled up, then pulled back a little from the cone.  I whipped the steering wheel around like I did before in the empty parking lot, and to finish, I backed up a little bit.  There it was, I did it.  I centered the car.  I was so relieved, and I knew my instructor was, too.  The examiner stated, “Well I can see you know what your doing.  Let’s go out on the road. road.”

We traveled on the road for five minutes and came back to the parking lot. For the first time in a long time, nothing went wrong.  Nothing went wrong.  I repeat nothing went wrong.  It was a long time since nothing had gone wrong in my life.

After finishing the test I parked and we went inside to fill out the necessary paperwork to place the hand control restriction on my license.  Both the instructor and I felt jubilant. I looked at her with sincerity and stated,  “Thank you for giving me some of my freedom back.”

With those words we went home, and within the next two weeks the controls were installed on my car.

 Take Away

I would like the reader to take away from this entry about getting over your nervousness or doubts.  I pushed off the hand controls for a long time because I thought I was going to get better. Once I realized I was not I doubted that I could pass the test again considering I never did.  The only thing we can do is to keep pushing forward and try to regain our freedom that the obstacles in our life take away.

Afterword

I was truly excited to get the hand controls.  It meant that I did not have to depend on everyone driving me everywhere due to my right ankle being in pain all the time.  I was relieved and joyful when the controls were put on.  It was worth every penny.

 

I know it has been a long time since I made an entry.  I will explain that later . . . just know I had been going and continue to go through a hard health struggle once again.  I was having serious doubts about continuing this blog.  I wanted to end this blog on a high note.  Now I do not know if I can. However, I know more important than ending on a high note is that we keep fighting.  That also means telling my story.  If I can touch one life with my story, all of this was worth it. 

This is the video on You Tube that taught me how to parallel park in minutes.  It is good for anyone who has trouble parking or is about to obtain their license.

 

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…

Afterword

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.

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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.