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Doug E! – 3/5/2018

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Gosh it disturbs me to see you, Doug E

Looking so down in the dumps

Ev’ry guy here’d love to be you, Doug E

Even when taking your lumps

There’s no man in town as admired as you

You’re ev’ryone’s favorite guy

Ev’ryone’s awed and inspired by you

And it’s not very hard to see why

No one’s shouts like  Doug E

No one gets mad like Doug E

No one’s head is as incredibly thick as Doug E’s

For there’s no man in town half as manly

Perfect, a pure paragon!

You can ask any insurance company

And they’ll tell you whose team they wished they were on


No one’s in pain like Doug E

Takes pills like Doug E


No one’s got a swelled ankle in his leg like Doug E

Doug E:

As a specimen, yes, I’m intimidating!


My what a guy, that Doug E!

Give five “hurrahs!”

Give twelve “hip-hips!”


Doug E is the best

And the rest is all drips


No one fights like Doug E

Gets approvals  like Doug E


A 100% in appeals like Doug E!


For there’s no one as burly and brawny

Doug E:

As you see I’ve got biceps to spare


Not a bit of him’s scraggly or scrawny

Doug E:

That’s right!

And ev’ry last inch of me’s in pain, with no fear


No one can win like Doug E

Matches wits like Doug E


In a denial no one overturns it like Doug E

Doug E:

I’m espcially good at commandeering!



Ten reversals for Doug E!

Doug E:

When I was a lad I fought for my grades

Ev’ry teacher  submitted and gave me an A

And now that I’m grown I fight to be paid

Over 30 denied claims that got in my way!


Oh, ahhh, wow!

My what a guy, that Doug E!

No one is persistent like Doug E

Fights the medical industry like Doug E


Then goes on helping others like Doug E

Doug E:

I use reversed denials in all of my decorating!


My what a guy,

Doug E!

One of her favorite movies and her favorite place to eat and it has been a long time that I wrote anything just for fun.

The $600 Mistake – Moving On – 2-24-18

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I spent the last year and a half recounting my experiences from the previous 10 years of my life.  Recurring themes in my entries were recovering from surgeries, fighting for my healthcare, winning back my freedom, and reclaiming my rights as a patient.  It seemed like every year was a new story about the same old problem.  As the years went by I had many successes.  A few of these successes included having an insurance company reprocess all of the claims from 2015, which resulted over $700 in refunds; having denials overturned for prescriptions; overturning medical testing denials; and fighting for my freedom by successfully passing a driver’s test for using hand controls to drive.  Having gone through all of these trials, I learned that no one will fight for your health care and rights more than yourself.  As health care options to help me feel better were winding down, I found solace in knowing my fighting with the healthcare industry was winding down as well.  It took a lot of energy and fight out of me.  As the pain continued to get worse throughout  these last few months I had less and less drive in looking for additional medical alternatives that could help me.  This led to the decision of accepting my fate of relying on medication and lying on the floor of my living room in order to keep the pain down.  Overall, it did not feel like I won so many battles since I was worse off than when all of this started a decade ago, but deep down I knew that wasn’t the case.  I also accepted that my story did not finish the way I was expecting it too.  I thought it was going to end with the cliché of “… and he lived happily ever after.”  However, this was not a fairy tale, it was real life, and in real life a lot of the things you wish for do not turn out the way you want them to.  But, hey, I gave it a hell of a try.  As long as my blog entries reached out and helped at least one person and encouraged fighting through all of the denials insurance companies can deliver, it was all worth it.  Others could have a more positive outcome than mine.

Alas, after a decade it was finally finished. The surgeries, the fighting for medication approvals, and the endless search of medical options was over.   The doctors agreed I had done everything I could have in trying to help my body fight Complex Regional Pain Syndrome and the other health issues I had.   In the month or so afterward, I went into automatic pilot mode.   I woke up, did as much as I could before the pain took over, took my medication, refilled my scripts, went to sleep, and did it again.   Day after day was the same with some minor differences.   I might have had a follow-up appointment to go to, I may have had a day with less pain that let me leave the house for an hour, and if I was super lucky I may had had a visitor stop by, though visitations were getting fewer and farther apart.   In the end it was: wake up, take pills, order them, play a game, study Korean, and then go to sleep.   It actually felt good not to worry about anything else or stress over having other medical options approved.   This was life and though it was not much, it was mine and I adjusted to it.  A pain-filled life, but free of stress from other influences.  Hey, it could have been worse.   At least that is what I kept telling myself.

It should have not been surprising when this complacent way of life came to a halt rather quickly at the end of January 2018.

It all started when I logged into my prescription company’s website to order a three-month supply of Lyrica.   In November the prior year the cost was $99 for three months.   I knew the deductible of $450 reset and that Lyrica afterwards was $100.   I knew it was going to be $550 plus tax for one drug for three months.   However, this medication did help, so I knew it was worth it.   I proceeded to press the refill button and then the checkout button.   The price was around $600, I figured that was right and I would review the information after I put my payment option in and before I hit complete.   I had my credit card ready and Amanda’s new health savings card with $500.

As the payment screen glared at me, my eyes kept searching through the web page.   I thought I was missing it, but I knew I was not. There was no option to pay with two credit cards, only one.   I wanted to use the health saving card and use my other card to finish the transaction.   With a sigh and a growl that would have scared off a 100 lb dog, I began to dial the customer service number.   Oh, how I hated calling companies. My dad, who is computer knowledgeable, was still old school in dealing with companies.   Whenever he wanted information, to place an order, or file a complaint he always called the company.   He still tells me to call a company to get information when I am helping him with something.   I have to keep reminding him, that I do not do phone calls where people can screw things up.   I do everything on the internet where I can save what I am doing and have proof of what I had done.   However, this time I had no choice.

Within a few rings I was greeted by an annoying recording saying, “Thank you for calling (pharmacy name).   For English press 1, for Sp. . . .” I quickly pressed one.   It proceeded to the next menu. “If you’re a member press. . . .”  Beep.  I pressed 1. “In a few words please. . . .”  “Customer Service!” I yelled, hoping that somehow it would recognize my tone and put me right through. “I’m sorry the respons. . . .”   “Customer Service!!” I screamed louder, already annoyed.   “I’m sorry, the response was invalid.” She mocked at me over the phone.   “Oh God! I hate this!” I exclaimed in such a dramatic fashion I swear I could have won an Academy Award.

“If you’re calling for a refill of a prescription press 1, if your calling about a recent order press 2. . . .”

“1!”  I thought, good thing the windows were closed so the neighbors did not hear me.  My blood pressure was starting to rise and my temper was getting short.  I hated the phone.  I hated talking to companies on the phone, and I certainly hated talking to companies on the phone when I should have been able to do something on their website.  “If this is a refill please have your RX number ready and press 1. . . .”  “Representative!”  “Alright, but before transferring you to a representative please state your member ID follow by your birthdate.”  Thank God, I thought.  I quickly stated the information and heard the delightful message that I was being transferred to a representative.

To my surprise it only rang twice, and even better, a delightful, young, cheerful, voice greeted me. “Hi Douglas, thank you for verifying your information already, how can I help you?”   The voice reminded me of a bank co-worker named Stephanie, who had a very pleasant voice over the phone even when giving customers not-so-great information about their denied loans.   “Hi, I need to reorder my prescription for Lyrica.   I was on your website and there is not an option to accept two payments.   I want to make a payment with my health savings card and my other credit card.   It will be around $600. This includes my deductible and the 90-day supply I ordered.   The same one as in November.”   She quickly responded, “Okay, I understand.   You want to use two different payments on Lyrica, OK, let me bring it up.”  Customer service 101, I thought, repeat the question back to the customer to ensure understanding, not bad, not bad at all. “Hmm . . . Mr. Donn. . .Mr.   Dongelo. . . Douglas, sorry. I do not see where I can use two payments.”   “It’s OK, it is pronounced Done-angelo, but Doug is fine.   Yeah I was on your website and I did not see it either.   I think it would be dumb if your company did not accept two different payments.”   “Yes, there should be a way.  Do you mind if I put you on hold and ask my supervisor?”   “Sure. Not a problem”,   I answered back.

I was a little shocked this had not come up before, but hearing how cheery she was, I kind of assumed she might be new and the life of a call center employee had not crushed her spirits yet. (I’ve had first-hand experience with that.)

After a few minutes she came back on and stated, “I have a solution.   My supervisor said use one card and put a credit on your account and do the same for the next”, she continued after processing my information. “Okay, so that is Lyrica for $580.   I will process that right away and that will be delivered within a week.” “Awesome, as long it is like the last script.   I appreciate your help.” “Thank you Mr. Done-angelo. If you have time can you please fill out the survey after the call?”   I thanked her and filled out the survey. I gave her five out of five stars. All I had to do now was wait.

Less than a week passed before the package was brought inside by Amanda when she came home from work.   Amanda opened it and yelled from the kitchen, “Hey, you only received a 30-day supply!   It says bottle 1 of 1.” “What?” I mumbled through a daze of muscle and nerve medication. “Your $600 Lyrica is only a 30-day supply!”   Sobering up a bit more, “What!   You’re kidding? I told them to refill it like they did in November.   I knew something was going to be f’d up when I had to call them. Give me the damn package.”

Before Amanda even reached my chair to hand me the package I was flying through the prompts that I called almost a week before.   Within a few minutes I was greeted by a call center representative.   I was wondering if the other end of the call was being answered in the U.S. or abroad since I was calling after 6 p.m.   “Hello, Mr. Drangelo.” “Done-angelo”, I interrupted. “Sorry, Mr. Donagelo. How can I help you?”   “Yes. Last week I called.   I spoke to a nice representative that placed an order of Lyrica.   It was a refill from the original order in November for 90 days.” “Okay let me see.   I see the order. It says it was for a 30-day supply.”   “No”, I stated abruptly. “I told her it was like my last order in November.   A 90-day supply. $450 deductible, than the rest because of it being a name brand.”   “Let me bring it up.”  I heard the clacking sound of a keyboard through the phone line.   I knew it, something had to go wrong, I hate calling companies, I said to myself, my blood pressure on the rise again. I thought I was done with this shit. “Okay Douglas, I see $450 was the deductible and then $200 for a 30-day supply”, he responded. “Noooo. . . they charged me $600 and as in November it was supposed to be a 90-day supply”, I said in a forced calm tone.   “If that is the case then we saved you $50.00″, he quickly stated.   “You saved me $50.00?? You charged me $600 for a 30-day supply instead of the $90 for a three month supply like in November.   How is this saving me $50.00?” Amanda came into the living room and listened to the conversation that was on the speaker phone setting.   I could see she was getting upset, realizing we just spent $600 on a 30-day supply of Lyrica. Our anger was compounded by the fact the person on the phone was not understanding what I was saying. “Look Mr. Donangelo, we processed your refill for you and the cost here says it is $250 a month.” I stated in now a completely frustrated tone, “Your numbers are not adding up or making sense.   If my deductible is $450 and the bill is $200 that would be $650,   I was charged $600 and unlike the one in November it was for a 90-day supply .” “Yes.   We must have saved you $50 since we only charged you $600 instead of $650.”   “Okay, even if the 30 days was correct, why would you give me a $50 discount for nothing? Do you just go around giving $50 to people like Oprah?   Can you please tell me the difference between this order and November’s order?” “I already told you. It was your deductible for the medication and the cost of the rest”, he replied back, almost as frustrated as I was, but he was not the one being charged $600! The very next image in my head was one of Jackie Chan and Chris Tucker in Rush Hour.   I said, “Sir? Do you understand the words that are coming out of my mouth?   Please put your supervisor on.”

“Okay, let me transfer you.”

The supervisor picked up after a few minutes. “For the love of God.   Can you please tell me the difference between the November order and this order?   I was just charged $600 for a 30-day supply, after deductible that is $150 a month or $1,800 a year.   I do not have $1,800 a year to spend on one drug when last year it was around $90 for a three-month supply.”   “Okay, yes that is a lot for one medication for one month.   Let me find out what is going on”, the supervisor stated.   He then put me on hold.

It was then I realized, without looking anything up, what happened.  The drug changed from Formulary to non-formulary this year.   I thought this happened due to the drug being so expensive.   I told Amanda this and I said, “Cheap bastards prefer to cover generic medication and I bet they removed most drugs from the Brand Name List of covered drugs.

Sure enough, that is exactly what happened.   He came back on the phone and stated that the drug came off the covered list. I quickly referred to my phone call when I ordered that I specifically stated I needed the drug like it was in November.   I added the employee stated, “Yes it will be”, and then ordered it for me. He concluded the phone call by stating, “Give me a week, Douglas, and I will personally take care of this for you.   I would be upset too if I was charged $600 for a one-month supply.   This is in my hands now and I will take care of it for you.” I thanked him for his time.  It was not his fault, and he grasped the situation.   I asked for his direct line, which he gave me.  In an exhausted tone I thanked him again for his time, and hung up.

Two weeks went by.   I heard nothing. I was not surprised.   Disappointed, but not surprised. I silently cursed the company under my breath as I dialed his phone number.   His direct line with no extension was another number for the automated system.   I was fuming. I proceeded to hit a bunch of buttons until someone picked up.

After verifying my information and going over everything that had happened, the gentleman on the line apologized for everything and stated he would look into the complaint.   “Mr. Donnangelo (I was impressed he got it right) I see where your contact said he was going to handle the matter and was going to fill out a complaint.   However, he did not do any of this. I do not see one form being sent out.” “REALLY!   I guess that is his way of personally taking care of things.   Did he think I was not going to call back and fight the claim?   I was just going to let it go?” “I am not sure.   He is in the office today. I could transfer you.” “No.   He did not do the job the first time after making one promise after another.   I am not trusting him again. I want you to handle it.”   I replied. “Okay.   What I am going to do while you are on the phone is put in a Medicare grievance.   It is your right to file a grievance anytime you have an issue or you think something was done wrong.   It is possible that your rights were violated twice.   Once by the order not being correctly filled the way you thought or asked for, and then again when your complaint was not filed.   I will give you my name and number and before we hang up I will give you the number for the grievance department.   However, in two days you will receive a phone call to follow up on your grievance.”   I thanked him profusely.  It appeared like he knew what he was doing and he seemed genuine about what I needed.   It may not have been true, but he acted like it. I filled out the survey for him giving him 5 out of 5 stars.

When two days passed I did receive a phone call.  A case manager from the grievance department heard everything I had to say and stated she already listened to the recorded phone call and the gentleman I had my first grievance conversation with. She stated she did hear him state he was going to handle it and that he was going to be reprimanded for not filing a grievance.   She said this was a big violation because this was going against not only the company’s policy, but Medicare’s. She did say she had to listen to the original conversation between the woman and me.   She promised to call me back next week, since it was Friday.   I said OK and was pleased I was making headway, and that the third guy I had talked to actually followed through with his promise.

The next week I did receive a phone call.   She apologized three times and told me I was getting all of my money back and I could keep the medicine.   She stated that the woman on the phone said it was going to be the same as my November order which was a 90-day supply.   She added the she violated Medicare policy as well.   She violated it by not stating the milligrams, duration, quantity, and how many days the supply was ordered.   Amanda and I were very thankful for her willingness to follow through, and within a few days the refund for $600 was posted on my account.

I did find another drug that is working almost as well as Lyrica which is only $9.00 for a three month supply.   A huge difference in price. I wanted Lyrica because I knew it helped, so I did not mind spending the extra money last year.  And even though it is not as effective and I was just told by my doctor to double the dosage on the replacement drug, I am satisfied knowing I will be saving a ton of money from this point forward.

Hanging up the phone, I looked at Amanda.  We were both frustrated by what I had to go through, but we were glad it was over.

I turned the volume on the television back up and about that time a news promo came on stating that tonight they would be interviewing Penn State Medical Center doctors about a new device that will help chronic pain sufferers.   I looked at Amanda with a huge smile and kept the cable tuned to the channel . . . .


What was a five-minute conversation with the initial woman representative turned out to be almost a month-long ordeal for me to fix. (I saw this a lot working at the bank.   An example would be a teller making a quick deposit mistake that took a manager a week to fix.   It may take an extra second to verify what you are doing and people in line might get impatient.   However, a mistake found early will save everyone time.)   Maybe I should have verified the quantity with her, but I did state the same thing from November, which she checked.   If she would have done her job and reviewed everything I would have caught it and the problem would have been solved then and there.   In the end she will learn of everything I had to go through because of her oversight.  But once again I was concerned, thinking about people who don’t fight for their rights.   I know people who would have just let it go and would have been out the $600.   I thought the fight was over, but I now know that my fight for my patient rights will never end as long as I am on this Earth.  

I also want to cover three more points that I posted on Facebook, but I think it would be best if each point would be covered in its own entry.   I really want to help people learn that the health care industry is so busy and filled with overwhelmed employees that they will not give you the extra time you need to make sure everything is okay.   You honestly need to manage them as if they were your employees, to make sure they do set that time aside for you.

If you read this whole thing I truly appreciate it.  I wanted to drive home the point in double checking everything and fight for every dime that is yours and every procedure and medication you need.  

The next entry will be soon and shorter.  I will cover a day in the life of having CRPS.


Here is the invoice.  I erased personal information besides my name.  I was shocked when I only received a months worth of pills.
I do not know where I would be without this amazing woman.  A painful day on vacation, but 100% worth it to be there with my wife.


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?


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.

Here and Now – Moving On – 12.29.17

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It has been a long time since I wrote an entry for my blog.  As I approached the ending of Story Part 2 in September, I was feeling emotionally exhausted.  Before I wrote each blog entry I used to sit in my chair and remember as best I could about each experience that I was typing about.  I mentally lived the last 9 years of my life in one year’s worth of blogs.  If that was not enough to drain the remaining mental energy that I had, the fight to live without pain seems never-ending.  When I started the blog, I honestly thought I would not be having pain by this point, or at least not as much.  The happy-ever-after fairy tale ending I hoped for was being torn down by the reality of life.  As the last entry was posted, I was worn out physically from my disability and mentally form living and reliving my life.    I am now ready to move on and continue to keep sharing my tale. . . .

The remaining days of September, and October and November flew by in a blur of appointments, increased severity of pain, muscle spasms and twitches, and planning for a holiday vacation with the family.  After all of the surgeries, procedures, and implants, the pain had not stopped.  In fact it was as if a beast inside me kept growing, trying to take over every aspect of feeling that I had.  Everyday I found myself lying on the floor to help lessen my back pain.  My daily cocktail of 15 pills did not seem to help.  The pain increased (continues to do so) and interrupted my sleep.  At this time I had been sleeping only about 2 hours a day.  If I am lucky enough I can go to sleep for 2 hours, than wake up for 2 hours, and then finally go back to sleep for another 2.

Over those long months I felt I had only one choice.  I had to give it one last effort.  I made an appointment with a new spine doctor and a new neurologist that specialize in pain management and Regional Complex Pain Syndrome.  I remember waking up the day of the appointments asking Amanda what she thought the outcome was going to be.  I should have sensed it, but at the time, a person who is desperate will see what he wants to see.  Amanda looked at me and stated, “Maybe it’s worth a try”.  Though her words contained a hint of optimism, looking back I should have noticed the eyes that went with those words.  Those eyes had no hope – as if the lights had gone out in a long highway tunnel that blocked out all the light.  At least, that is how I remember them now.

However, I didn’t notice her eyes, I only heard what I wanted to hear. To me I had no choice.  It was my last chance to get any help besides medications, shots and implants.  I have no idea what options were available, but hey, I had read an article about doctors trying to do a brain transplant.  If they could some day transplant a brain, maybe Penn State researchers were working on something for the nervous system.

We arrived at Penn State Medical Center and already knew where we were going due to all of the other appointments we had there.  The staff was extremely courteous and the resident that came into the room first was amusing.  After spilling my guts to him about everything I had experienced and how much pain I was still in, I lay back down on the table and waited for him to respond.  He smiled at me and said, “Wow.”  I stated back, “Yeah.”  He apologized for everything I had gone through, and to me it seemed really sincere.  He stated he would go over everything with the doctor before he came in so I did not have to repeat myself.  I told him that I was very thankful and that I will see him in a day or two.  All three of us laughed.  My disability has taken 80% of my life away, but it will not take my humor and laughter from me.

The doctor entered the room and rehashed very quickly everything I said.  I was pleased that he grasped the situation so fast.  He sat down, and performed some tests on me and he endorsed the diagnosis of Complex Regional Pain Syndrome, he agreed with all of the medication I was on, and stated I may need more pain medicine as time passes.  He shared the opinion of my other spine doctor, that he could not perform any surgery to help me.  He stated the risk/reward is too greatly tilted on the risk side.  This is due to cutting into my nerves again and aggravating my syndrome.  He also stated that he saw the severe arthritis on my spine and bulging disks.  He added that I was doing everything he would have recommended.  The only option that he offered that no one else had was another type of injection.  However, after doing some additional research on his computer in the room, he turned around and stated it would conflict with my spinal implant and could cause death.  We all agreed immediately that was not an option and the implant would serve me better and to leave it in.  He apologized for not having any good news.  I thanked him for his time and told him I am used to it and not to worry.

When we arrived home I felt very different.  I can usually shake off getting bad news at appointments, and start researching my next appointment or avenue.  The difference this time was that there was no path.  After all of the years that had gone by, all of the procedures, all of the medication changes, it was now finished. I sat on the floor in pain, drowning in the realization that this was truly my life and a cure was nowhere in sight.  It hit me harder than anything that came before it.  I was so used to holding on to hope, holding on to the next appointment, the next procedure, my next idea. . . but there was none.  There was nothing, all of my efforts had ended in failure.  This was the exact opposite of my intentions for my blog. I wanted to find a miraculous cure, I wanted to say, “Hey, if you put forth the effort, good results will come”. I wanted to tell everyone do not give up.  If they can fix me, they may be able to fix you.  But this was reality.  It wasn’t a movie with an ending I can write myself.  I spent a year telling my story, and now the ending is not how it was supposed to be.  My pain is not gone like it was supposed to be.

Thoughts like those kept spinning around in my head.  It took a long time to snap out of it, even just a little.  I honestly still am not totally out of it.  I stopped talking to a lot of people as I processed the feelings inside of me.  Sadly, some of those people stopped contacting me because I stopped initiating communication with them.

I contacted some of my doctors and cancelled my follow-up appointments.  Many were simply to see how the drugs were affecting me.  I figured since the ideas have dried up, I can have my neurologist control all of my drugs.  I thought it would be best to have one specialist overseeing all of my drugs rather than having them supervised by a bunch of them.  It would also be less stressful for me not to go to so many appointments. I was happy to hear my neurologist at Holy Spirit shared my opinion.  I like him a lot.  He and his staff and office employees are wonderful.  They truly care for me and want the best for me.  He also prescribed a sleeping pill for me a few days ago.  So far it is not working, but I have to wait a week before it takes full effect.

That is what I have been up to these past few months.  It has been a rough, unexpected road.  My condition makes it difficult to type, as sitting up is hard on my lower back.  It will take me a long time to write each entry.  I plan on writing about other things soon as well.  Maybe movies, what I been enjoying, how I’ve been keeping positive this week.  I still believe being happy is the true cure for everything, and I want to share how I do that in hopes that others will read it and get an idea on how they can overcome their situation and be happy as well.

I hope everyone will have a good New Year.  My next appointment will be in a few weeks.  Take care everyone!

B-E-A-R-S   B-E-A-R-S   B-E-A-R-S BEARS BEARS BEARS WHOOOOOOOOO!!!!!  A local hockey game Amanda and I go too.  I use to go twice a year, but since my activities have become limited we might go about ten now.  I am trying to adapt my interests.  While I have to leave some hobbies behind I am trying to increase the ones I enjoy.
There is no better than this woman right here.  She has been helping me for years.  Amanda is the best wife I could have ever asked for.

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   


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!

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!


Surgery 7 Spinal Trial Simulator – The Story Volume 2 – Part 9

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If the odds on surgeries were the same as in roulette, I was laying all of my hopes and prayers on a single number on the wheel. Betting on a single number to win was the worst odds, but if the outcome came in my favor I would strike it rich.  Rich not in a monetary value, but rich in regaining my freedom and releasing me from pain that spreads throughout my lower body from waist down to my toes.

The greatest expectation I was told by the spine pain specialist was an improvement between 40 to 60%.  I was thrilled.  When you’re desperate, your thought process and expectations becomes cloudy.  I did not hear the 40% at the time.  All I thought about as I lay on the floor the night I was told the range was the 60% value not the 40%.  I told Amanda that I may be able to go back to at least a part-time job for a few hours or be able to work at home if my medicine dosage goes down – which my neurologist agreed was a reasonable expectation.  Amanda was quick to respond that I would still have pain, it may take a long time to feel better, and I still had ankle issues.  She was trying to lower my expectations to save me from disappointment, but that night I heard nothing.  I ignored everything she said, and stated, “Just think, I don’t have to put all of these tens pads over me anymore and carry this huge remote (that controls the intensity of the shocks sent to the pads).  I can’t wait!”

I am not sure what happened that night, but I had a bad nightmare that may have been from my nerves or stress or to quote Scrooge, “an undigested bit of beef, a blot of mustard, a crumb of cheese…” but the next day I was not feeling as happy as I had been  the night before.  I had six surgeries before, but they were all on the ankle.  “This was going to be on my spine!”, I thought.  If something went wrong with my ankle operations I risked losing a foot that has plagued me for over eight years, if something went wrong with this surgery, I could end up paralyzed.  They were going to be soldering a device on my spine connected to my nervous system.  It all sounded crazy.  I was up four hours before Amanda was, and during those four hours I was feeling too nervous to look on the internet for information.  I was always told by my doctors that the internet was the worst place to go seeking a diagnosis for an illness.  The internet  made it easy to make one think that their normal cold may become a deadly disease.  Misinterpreting information like this makes patients feel more stress and makes them more nervous As they wait for a real diagnosis. So, thinking of this advice I decided to stay off the internet.  I had learned there were more people on medical blogs complaining about undesirable outcomes, than successful ones.   By the time Amanda woke up, I was a nervous wreck thinking about the surgery.  A feeling I had not felt since my first or second surgery.

Having a wife who is a nurse is a blessing and a curse.  Amanda provided inside knowledge of the medical field, However, I felt she was more desensitized to my emotions that morning.  That’s a trait I feel is good for a nurse’s emotional stability when dealing with the medical issues of a multitude of patients.  Fortunately or unfortunately this lack of emotion is brought home as well and not left at the hospital.  Amanda walked down the hallway, rubbing her eyes as she was trying to wake up.  I turned around and looked at her and stated, “If they screw up, I could become paralyzed!” Now it may be because she was a nurse and desensitized like I stated above or perhaps she was tired, but she looked at me on the floor and retorted, “They put pacemakers in for people’s hearts all the time, I am sure they can handle a stimulator.  It is done all the time.”  She then turned into the kitchen for breakfast.  In her mind, she had allayed my four hours of worry, and reassured me with a few words.  The topic was closed. However, in my mind it would not be over until it was done, but instead of pushing the issue, I lay on the floor in silence and waited…

The day for the trial surgery came without much ado.  My nerves were calmer, it was either from medication or it felt like I was just jumping on the same horse I always ride.  When we arrived at the facility, I was pleased to see that the paperwork I had to fill out for the trial was only a few pages long.  I quickly initialed and signed the forms and waited with Amanda to be called back.

Only five minutes passed before the surgeon came out and told me they were ready to go. The room was only a few feet away, and since it was an outpatient procedure I was able to walk into the room, instead of being wheeled in on a gurney.  I was instructed to lie on my stomach and put my head in the hole of the pillow and my arms in the arm rest below.  It was the same position I assumed for receiving a shot for my back.

During the next few minutes the doctor instructed me on what was going to take place.  “Mr. Donnangelo you are here for a trial spine implant?” he asked while his voice recorder was on. “Yes.” I replied.  “What we are going to do is numb your back.  Once numb, we will place a lead onto a nerve ending in your spine that will be connected to wires that will come out into a box.  Once done, we will adjust your device using a  remote to your liking and then you will go back into the room for instruction on how to use your device.  Do you have any questions?” Lying on the table, I felt the cool disinfectant gel followed by the pinch of a needle going into my back releasing the numbing medication, “Ummm…”  I stated, but that was a lie.  I was having wires sticking out of my back connected to my spine, what could go wrong, I thought.

I lay on the table for around forty-five minutes, listening to familiar noises such as the heart monitor beeping, instructions being given to the nurses, and the sound of pressure going in and out of a blood pressure monitor.  I only felt minor pressure on my back during the procedure.  After I was told the leads were placed, I felt only the slightest amount of pain from one of them.  They taped gauze pads to my back to cover the punctures that had been made, and applied extra tape to protect the device.

It was honestly painless; when it was over I moved my legs and was happy to realize Amanda was right.  It was no big deal, just like she said  After the tape was applied, a representative from the company stepped beside me and told me he was going to turn the device on low and I should let him know when I can feel it and he will adjust it accordingly.  I was anxious how it was going to feel.  I was not sure what to expect.  As I lifted my head the slightest amount, I saw he had a box in his hand with a dial or push button to raise the intensity.  As the first wave of “shocks” were felt, the sensation was very familiar.  It felt exactly like my tens unit.  This sensation was pleasing to me, but also worried me.  It was not a significant improvement over my tens unit, except it is without the pads.  If the tens unit didn’t help me a lot how would this?  I kept my worries to myself and answered the questions that were given to me.  Questions such as, where do you feel it, how much do you want it turned up, and how do you I want the sensation to feel.  It took only 15 minutes to program the device.  I could feel the “shocks” in my legs and lower back and a little in my stomach.  I knew the trial was only for four days and felt that it was good enough.  The representative was very pleased it did not take long.  After he disconnected his remote, the taping of of my back was finished and I was able to get up and walk to the room for instruction on how to use the device.

It was very simple to use.  It was actually simpler than my old tens unit. The remote was small and fit into the palm of my hand.  It had an on/off button, a plus and minus button to control intensity, and a sync  button.  It was very easy to understand.  After we were done, an appointment was made to take it out in four days. At that time I would report if I had decided to get a permanent implant or not.  It was the first time I had a trial surgery and was able to decide if I wanted the permanent installation. It was nice to have the option to either discontinue the trial without going to the next step or move forward with the permanent implant.

Amanda and I went home, and I told her over the next four days I did not want to do much.  I was afraid of getting a wire connected to my back stuck on something and having it pulled.  She understood and knew I needed to rest a few days.  The punctures that were created to put the leads in did not hurt too much after the  local anesthesia wore off.

I was pleased overall with how things went.  It was the first procedure I had ever had that did not end up with me in more pain then when I started. I spent the next four days adjusting the implant when I needed to.  I told Amanda that it felt just like my tens unit.  Meaning that it helps, but was not the miracle I was hoping for.  However, I also told her they stated that the permanent implant would work much better than the trial.  So, if I felt like a tens unit was on me blocking some of the pain, a permanent unit would block more.  It only took two days to know I wanted the permanent one.  I actually knew before I had the trial, I wanted it.  I needed anything new to help release me from this pain.

The four days passed, I sent an email to the insurance company warning them I better not have any issues with approval for the permanent implant. The email was sent to my appeals manager and the vice president I had the meeting with a month ago.  I had no doubts that the approval was made before my first phone call to check the status of my approval, and to no surprise it was approved.  With approval in place, Amanda and I went back into the office to have the device removed.  I told the doctor it helped some and was once again told the permanent implant would work better since that device would be soldered onto my nerve endings.  The removal only took a half hour as they checked to make sure the wound was healed and all of the tape was removed from my back with and place band aids over my punctures.

I was looking forward to the permanent implant which was scheduled a month out. All of my nervousness was gone and I was more than prepared for the upcoming surgery.  Until then, I had to wait once again on the floor connected to pads with wires connected to my tens unit to help with the pain…


The tens unit was okay and it did provide almost the same relief the temporary implant did.  There were two things I liked the most about the implant. There were no wires outside of my body like the 8 used to operate my tens unit, and  that I was told the permanent device would be much stronger and better than the temporary.  There was a chance I would be 60% better which would lead to a decrease in pills.  To me it was a no brainer.  The trial  stimulator was just another step I had to get through to get the treatment I really wanted. 

As I left the office another patient was waiting.  It was an older lady who was just as nervous as I had been.  I quickly told her what I went through and told her that she did not have to worry and that they would take good care of her.  She smiled and thanked me on the way out.  I hope she is doing well . . .   


The trial implant right before it’s removal.  I still shudder when I think of a wire that is inside my body was also outside my body.  I was scared the whole time that it was going to catch on something and pull itself out.






OWW! MY BACK! – The Story Volume 2 – Part 8

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The meeting was over, the fighting was done, the battle of wills was coming to an end. If you remember I was told by the spine doctor that the back shots may take up to three times to feel better.  He insisted not to give up after the first one and that my legs should feel better, too.  However, the pain manager stated that the shots could and hopefully would help my back but were going to do nothing for my legs.  He even had doubts that I had Complex Regional Pain Syndrome, even though I could barely have wind touch my legs without sending off pain signals to my head like daggers stabbing me all over.  Almost everywhere I went, regardless of temperature outside, I had to wear a blanket over my legs.

It mattered not, I was just happy to have the first set of back shots.  A very simple procedure, I lay on my stomach, the doctor disinfected my back with wipes, and after two minor aches on each side of my spine it was done.  He completed putting fluid between my arthritic L4 and L5 vertebrae in a matter of minutes.

Afterwards the first set of shots hurt a lot.  The bottom of my back turned black and blue.  However, after a few days of lying on and stomach, my back was starting to feel better.  I actually couldn’t believe it and thought the feeling better was just a figment of my imagination.  If this is how the first set of shots felt I couldn’t wait for the rest.

I remember standing in the kitchen washing dishes the first and second week after the minor procedure, not feeling any pain.  I almost felt young again.  My legs still hurt, just like he said, but I could bend and stretch.  I had some movement back.  I marked on the calendar three months from the day for my next set.  I was told it was safe to have three sets of injections in a six-month period.  I am not sure why that is, maybe build up of the medicine in the back, but neither the doctor nor the insurance company approved more than 3.  I also read on Google that was the maximum amount of this medicine I could have.

As the second week turned into the third week I felt so much better.  I couldn’t believe the relief I had.  Something after all these years worked.  Sure the pain still was going through my feet and my ankle felt weaker, but my back felt stronger than ever.  I was able to do house chores to help Amanda again and even play my guitar a little bit.  It was bliss.

I thought the solution was found. However by the end of the third week, much like how my ankle felt after each surgery, I felt the slightest jab of pain go through my back while standing at the sink cleaning up after a dinner I made for Amanda.

I disregarded the sensation, thinking maybe I was doing too much and decided to rest the next few days.  As the fourth week went by, I found myself resting on the floor more and more.  The floor provided a hard, but comfortable surface.  I tried not to get too anxious, but the jabbing lightening sensation was returning.  I still had a month to go before my next shot.  I was not deterred though.  I had a whole month of relief from the first shot, imagine what the second and the third will give me!

As the weeks went by, I felt discomfort once again forming in my lower back.  I could no longer do the extra house work or prepare any dinners.  However, the second shot was only a little bit away.  The best part of it all was that the future shots were pre-approved, so I did not have to call the insurance company.

By the third month, I found myself back in the office, explaining to the pain manager I had experienced a month of relief, but I eventually felt just as bad as I had before getting the first shot.  He stated the way I felt shouldn’t have degraded that far, but he was willing to do a second.  The second procedure was done very much like the first.  The only difference was that I had no pain from the injections this time.

Much like the first time, I felt great again.  I tried to do a little less, but the whole point of getting these shots, was getting back to a normal life.  I once again found enjoyment in my little bit of renewed freedom.  Being able to do things for myself felt like the chains of disability were broken once again.  I had all the expectations in the world that this was going to work.

My enthusiasm only lasted a week.  By the second week, I found myself back on the floor for longer periods of time, until I was stuck there again.  The chains of disability were wrapped around me once more, secured by a lock whose key had been thrown away.

I was so close this time, I remember thinking.  It actually helped for a little while.  Some relief was better than none was it not?  Even though the relief had only lasted a week, maybe the benefits of the third shot would last longer?  However, that shot would only be allowed more than two months later.  My only choice was putting my tens unit back on and managing until then.

I coped with my situation the best I could.  All I could think of is another procedure and another failure.  However, there was something inside me that said, do not give up hope, and keep trying.  I called it my dad’s determination.  A determination that forbids giving up that he taught me long ago.  So, I resolved to wait until my next appointment to come up with a new plan or continue with this one.

The streaking of pain that went up and down my back, around my legs, through my feet, was becoming almost unbearable.  In the meantime, my neurologist put me on more pills like Lyrica and Cymbalta to help with the pain.  My pain manager increased my dose of Backlofen and Oxycodone at least until a solution was found.  This started the interval of my life I liked to call the zombie period.

I was feeling so medicated that I became a zombie.  I felt very dizzy and very sleepy.  However, the feeling of dizziness and falling asleep was a much better alternative than lying in pain all day.  My short term memory almost ceased to exist.  Amanda had to keep repeating herself throughout the weeks, to remind me of stuff.  We downloaded a calendar on our phones to share appointments, events, and her work schedule, so I knew what was happening that day.  She also bought a pill container that she filled with my medication each day, that included compartments for morning, noon, and night.  She had to do this because I was forgetting if I took my pills and at times I was taking double doses or missing doses completely.  Each day ran into the next, and the only thing that was important to me was what was on the calendar that day.  I never knew what day it was.  I just knew if there was anything highlighted in blue, that noted something was happening that day.  The most important thing was, the pain was being dulled.  I was drugged, but the pain was less.  It was then I realized how people could get hooked on pills.   Yet again, I was determined not to become addicted, and to only take what was prescribed – even if the relief wore off and the pain returned before my next dose.

Two months passed, which seemed like a year – or maybe an hour.  I’m not sure. I only knew I was sitting back in the doctor’s office explaining to him that the second shot only lasted a week.  He then stated that he was not going to do a third as there was no point.  The third would not help.  He added that normally the next step would be to  burn off the ends of my nerves.  However, he was convinced that my nerves were not getting pinched by my arthritic spine or bulging disks, even though my pain manager disagreed.  I remember sitting there wishing one doctor would agree with another.  I would have found that amazing.  I had experts not agreeing with each other and the only thing in the balance was my well-being.  However, trying to get them to talk to each other was like a forbidden ritual in the medical world.  At least so it seemed to me.

He presented one last alternative.  This type of procedure had a 60% chance of relieving some of the pain.  A procedure called a spine simulator.  He stated that he could implant a temporary spine simulator that would be placed on top of my back with wires going down to my hip.  I would wear it for a few days and if I liked it, they would schedule a procedure with another surgeon to implant a permanent one in my spine that would be placed under the skin.  He said this is the best next step since a tens unit did provide some relief for me.  He continued to explain the procedure.  I looked over towards Amanda to make sure she was paying attention, so she could summarize it for me.  But as soon as he said there was another option to help my pain,  my mind drifted to an image of Rocky training by running up the mountain, not giving up, striving to reach the top and achieve his goal.  His goal was to avenge Apollo’s death. Mine was to avenge the pummeling I endured from the pain that stormed through my body and had taken control of my life.  With another chance of relief, the gloves were on and I was ready for the next round in the fight against my pain.


I was not going to write anything this time in my afterword section.   The article speaks for itself.  I just wanted to once again thank my readers and let them know that nothing I write is exaggerated.  The pain, process or the way I felt.  I also want to reiterate what my goal is.  My goal is to have one person learn from my experiences.  From fighting for their right for treatment to knowing that feeling nervous about a first surgery is normal.  As my mentor, friend, and a person I respect as much as my dad Brad G. told me.  If I could write a blog that helped one person, than I paid it forward.  So, I have been typing for a year hoping that will come true.

If I have to climb or scooter over my own mountains I will keep going, pushing, and striving to find relief from the body that has entrapped me in pain.