The Crutch’s Chronicles
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.
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.
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.
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The sounds of the blood pressure machine and heart monitor were all too familiar. I found myself once again lying on a hospital bed listening to the surrounding noises. I waited with Amanda for each doctor, nurse, anesthesiologist, and other hospital staff members to come in and ask the same questions they did the past 5 times. I sat there and signed the same forms as they passed them to me one by one. I honestly just wanted this done with. It has become routine for me. It was so routine that we told my parents to stay home and not stress themselves out making the trip to and from Johns Hopkins. The nervousness of the first two surgeries were completely gone. The unkown of what was going to happen and how I was going to feel was no more. It was just another doctor\s visit. It was surgery this time instead of getting my blood levels checked.
After the forms were signed, Dr. Ficke came in and went over the procedure. He was going to go back into my ankle and remove any scar tissue that formed, while checking how the previous surgery was healing. Dr. Ficke is one of my favorite surgeons. He never lied, he never gave false hope, and he always spoke the honest truth. He stated he was not sure if this was going to help and if scar tissue was found it still may not be the issue causing the pain. However, he was willing to try this procedure to make me feel better.
In a previous appointment we had discussed other options. Options such as amputation, that could cause heart issues and phantom pains, that could result in staying on my pain medication. We discussed fusion as another last resort. I would lose all movement in my ankle, and at my age of 38 at the time, there would be a good chance the fusion would break. Also walking would put stress on my hips and back that could lead to replacement surgery. I agreed that I did not want these options and hoped with him that an arthroscopy would remove any anomalies that were causing the pain in my leg and ankle. The last thing we discussed and agreed upon was that the anomalies on my pituitary gland may be causing the hormone issues in my blood, but it had nothing to do with the pain.
He left us in the waiting area, and two staff member came in to excuse Amanda and to wheel me back to the operating room. There was no signing of my version of the Hoz song, but I did asked them not to tell me when they were going to put me out and to please use whatever they had for the last surgery to wake me up right away. I remember laughing when the anesthesiologist said, “Of course we will use the same thing, it’s an outpatient procedure. We want you awake, so you can go home.”
I told her she needs to call Penn State and let them know what they use, because their philosophy was to knock you out into tomorrow morning. With that final statement, off I went again for what I thought was the last time….
Three hours went by like three minutes. As promised, I woke up without a groggy feeling and noticed to my right Amanda already sitting in a chair beside me. I asked, “Did he stop by?” She said, “Yes, but he will be back. He found a very large piece of scar tissue and a very small piece beside it.” Lifting my hand to my head to help shake the cobwebs, I stated, “Well, at least it wasn’t for nothing.”
The nurse was going through the discharge report and stated the pain pills should be taken at maximum the prescribed dosage, but I can get off of them as soon as I felt that I could. A few more minutes passed by and then my surgeon came in. He stated the same thing Amanda did, and asked how I felt. I told him I was okay and was ready to go home. He agreed and said he will let his staff know and they will remove the IV and let me sign the discharge report. I thanked him for everything he had done and added that I would see him in a few weeks to remove the cast and stitches at the follow up visit.
The drive home took us over two hours. We talked about everything except the surgery. Amanda made sure she drove slowly and carefully to avoid bumping my leg around in our car. We discussed everything that we had been going through.Finding out about the anomalies, the on-off again pain I felt in my left ankle that was being pushed off, the constant deterioration of the cartilage and bone in my right ankle, how the EMG fit into the whole spectrum of things, and most importantly, what was the plan for the next six weeks of recovery?
As the conversation passed from topic to topic we arrived home, I crawled up the stairs, turned the corner and crawled back into my chair. As Ipassed out within it’s cushiony grasp, The last thing I heardAmanda on the phone with my parents letting them know everything was fine.
Thank you for going on my adventure the last few months. This surgery was on 12-16-2015. We are a little more than a year out to real time. What happens in the next year is more than what had happened in the last seven to eight years. I ask that you keep following me. What I wanted to stress in the entry is how something so foreign like surgery so many years ago, has become routine. If you are reading this heading and you are facing your first surgery and feel scared, know that it is normal. It is how I was, but like riding a bike, you get used to it the more you do it. By the time I hit number six it truly was like riding a bike. It became more of an inconvenience knowing how long it was going to take to recover than a concern about going through the actual procedure. I was consoled by the knowledge that I was being treated by one of the best surgeons.
The next few entries will go from my procedures to the aftermath of having the procedures. Dealing with the bills, insurance, and trying to get my freedom back. I believe a lot of people can benefit from reading the future entries. I will also share how I appealed decisions of coverage and learned how to question the insurance company regarding payments. It is a whole new trip from what was written before. So, keep your buckles latched. The journey has just begun.
I received a phone call five minutes ago. On my phone it says that the call was received at 7:55 p.m. on 6/28/2016. On the other line was a nice lady asking if Doug was home. I told her that it was me that was speaking and asked how I could help her. Before the conversation continued, she told me that I was the happiest person she has talked to all day. I thanked her and she let me know she was from the blood bank and wanted to make sure I knew that my wait period was over and that I was able to donate blood again. I told her that I could, and then mentioned the last time I was there they needed to make sure I could donate due to all of my medication for my legs and hormones. As the conversation continued I gave her my blog information and she asked me how I stay so positive. I laughed on the phone and told her that I had no idea, than I told her that was not true.
I began to tell her that my experiences at my previous job help me keep a positive attitude. I told her how I volunteered at the Ronald McDonald House multiple times. I told her how seeing the families there and what they are going through had to be a lot harder than anything that I have been through the last eight years. I then proceeded to tell her how I volunteered to raise food for the Caring Cupboard, a food bank located in my area. I told her knowing that there is a need for food in the area tells me that those individuals were going through a harder time than me. I told her that putting their issues into perspective with my own makes me feel that I truly have nothing to complain about. It is those experiences that help keep my attitude in check. Since I started this blog, I have begun following others who have chronic pain. Pain that certainly rivals mine. I feel that I cannot complain or let my pain bring me down, certainly when they are going through a harder time.
Of course, there will be days where I will complain about my pain, well almost every day, but I will not let it overcome my over all well-being. For instance, I had my appointment with my pain manager yesterday and he stated that I may never get rid of this pain. He said that even if they find a definite reason for it, the pain may be imprinted onto my brain. He stated dealing with pain for eight years could cause that. He also stated besides the leg pain, I will always have bad ankle joints. I had another doctor tell me the same thing. I may also need to increase my meds again. Amanda also just brought home her mom who will be living with us for the next few months. She was just discharged from the hospital after eight days due inflammation of an organ. It is not hard to find misery. It is not hard to concentrate on the things that make a day bad. I could list a ton of more things that have gone wrong. For example, I could tell you how the water pipe to the ice maker leaked into the floor and flooded the ceiling downstairs or how the hospital screwed up more bills that caused them to overcharge me. I could have, and I might just have, but I won’t go into detail of everything it took to make them right or to clean up the mess.
I guess what I am trying to say is that it could be worse, at least for myself. I might not be able to walk short distances, run, bowl, or do many other things anymore, but I know that it could be worse. My advice would be to try to concentrate on the things that are not making it worse. Friends, family, the support of loved ones. Take time out of your day and enjoy the little things, regardless if you are in pain, having work issues, or family issues. Even the busiest person can take ten minutes out of each day and make it just for them. Oh and just one more thing….Smile and find something to laugh about.
I have been working very hard over the last four years, trying to bring my body back to health. Due to my ankle joints and the pain in my legs, I cannot perform any cardio exercises except riding or using a reciprocal bike with zero resistance. I have come a long way since the day I first started.
On my blog right now, I have touched a little bit on how much weight I started to gain. At one point I gained over 20 pounds and weighed 230 pounds. I would lose some of it as I recovered, but as another surgery turned the corner, I would find myself gaining 15 to 20 more pounds. My cholesterol, blood pressure, and overall well-being were in jeopardy.
I learned exercises from my physical therapists that I can do on the floor, and my wife stated she would help with my diet. I loved snacking on chips and other salty or fattening products and I knew I would have to change that. I remembered one time in a meeting at my corporate office my district manager, the same one from the blog, stated that he snacks on dry cereal, and that pretzels are good. My wife agreed to the idea and we stocked up and still do on hard pretzels and cereals that are easy to eat dry that I can snack on. I started to do push-ups and pull-ups. It was not easy. I was able to do a few push-ups maybe four, and as far as pull-ups, I could do zero. I bought a brand new push-up bar and I could not use it. I was not strong enough. I found an idea online. Get a stepper, and while doing a pull-up, you jump up and hold yourself as long as you can before letting go. Eventually that will make you strong enough to do pull-ups.
As stated, I started three years ago. It took more than three months of hanging there and letting go, before I could perform my first pull-up. I went from three push-ups to three sets of ten. The progress was slow, but I vowed I will not gain all that weight again. Everything I did was, floor-based or hanging-based, nothing where I had to put pressure on my legs. The physical therapists suggested pool therapy and I tried it once. I was uncomfortable doing it in front of people. So, I decided to stick with what I knew and what I could do at home.
As the years went by I added a weighted vest for push-ups. I have maxed out now at 60 lbs doing 3 sets of 12, and I can do around 40-45 pull-ups. I still do leg lifts on the floor for my legs and have recently purchased a workout machine for leg strengthening exercises to regain strength in my legs without needing to stand on them.
I am telling you this for two reasons. Reason 1: Find a motivational factor or reason to change your life if you are living an unhealthy lifestyle. I may not be living the best one, but it is much better. I found that will power came later. Seeing my strength grow motivated me and kicked in my will power to keep going. I found my motivational factor and ask you to find your own. Reason 2: Becoming more fit while still being disabled did have a downside that I never expected.
I now want to discuss reason 2. I ask the disabled to share if this has happened to you. And I ask the non-disabled not to judge a book by its cover.
About 8 months ago, I sat in a disabled space outside of a Staples. I always purchase products online and pick up at the front counter so I do not have to crutch around the store. Retrieving my item and climbing back into my car I put my handicap placard aside and looked at my item. Amanda says I am like a kid. No matter what I buy I like to open it in the car and look at it. So, I am looking at my product and with no warning I hear BAM! BAM! BAM! on my window. A police officer was standing outside. I rolled down the window and asked: What was the matter? He stated: “Where is your tag?” I said, “Oh yeah, I just took it down, I was looking at my product and was about to leave. Here is my tag.” He then stated: “Is this your mom’s or grandma’s? This is not yours.” I said: “Yes it is. Here is my card that goes with it.” After showing him my card I opened up the door and said, “See my legs, see my hand controls?” My legs were wrapped up in braces. The embarrassed officer apologized and then stated, quoting his exact words, “Oh! From the window you didn’t look disabled. I was just making sure someone was not using the space illegally.” A little baffled at the comment, I told him not to worry about it and went home and told Amanda my story.
Since then I have had people tell me that I look good, look healthy, and looked well, to the point some said I did not look like I was in pain. Since the statements come from friends, I take them as compliments. I guess after dealing with pain for 8 years I am getting good at hiding it. I am happy I look good, but is this fooling people into thinking I am healthier than what I feel? Will people think I am exaggerating the issue since I look good? These thoughts might seem silly to a person who never went through this, but trust me, if you go through this, these thoughts will come to you. It is not as easy as take the compliment and forget about it. Encouragement from friends can feel like a veiled accusation. Even though I know it is not.
Two days ago Amanda wanted to meet her brother at Knoebels amusement park. If you have read my blog you know I do not mention the names of my friends, doctors, or places of work. I do not mention their names because I do not know if they would want their names out in the public and I respect the hospitals and doctors who have tried to help me and that does include Flash. I just never want to see him again. Today though I will say Knoebels. Why? Because they happened to make me mad on the wrong day. Going through test after test and being told that some of them are abnormal, but they cannot tell me what is wrong had taken it’s toll on me that day. I would love to have proof and the ability to say here is the exact reason why I feel the way I do, but I do not have it. So for now, people just have my word and some abnormal test results to show that I have pain in both legs. I have plenty of proof for the pain in my ankle joints.
Amanda and I arrived at Knoebels, a pay-per-ride amusement park in a smaller community. The place is paved, with lots of shade, and it is a nice quiet park compared to Hersheypark, Great Flags, or Disney. While we were waiting for her brother to arrive I decided that we might as well go to the customer service booth to obtain a wrist band that lets me go through the exits for easier access to the rides. Yes, it enables line-jumping, yes I can get on the ride faster, but if you want to go through the pain and failed surgeries and the expenses that I have to get one, I say go for it!
Arriving at the counter in my awesome three-wheel red and silver-trimmed, seven mile per hour, two thousand dollar mobile scooter, with both legs wrapped in braces and a cane sitting by my handle bars, I asked the attendant for a wrist band. Without saying hello or how are you doing, he leaned over the counter to look at my legs and said (exact words) “We do not give bands to people who just had surgery. We only give them to the permanently disabled.” Normally I’m faster than Amanda, but not today. Amanda fired back, “He has had six of them so far and they all failed, he is disabled.” The gentleman responded, “Well he doesn’t look disabled. I will get him his band.” Recalling the battery of tests I had experienced questioning the pain I feel, the unproductive appointments with doctors guessing at what is going on, and having gone through all I had gone through . . . I felt a volcanic eruption building inside me. How I remained in control is still beyond me. “Exactly what is a disabled person supposed to look like? I am in a scooter, feet wrapped up, and have a cane.” He avoided the question and handed me my wrist band. Years ago in high school I learned from anger management classes I was forced to take, that when you are mad it is best to keep your mouth shut. I kept my mouth shut, my counselor would have been proud, and took my wrist band and went on my way. Literally two feet down from the stand was an elderly security guard. He stated that he loved my scooter and that he really needed one as his legs were going bad. His approval cheered me up. I do get a lot of compliments about my awesome scooter. He then asked me about my legs, I told him I don’t know and then screamed “According to that jackass over there I do not look disabled.” I just had to vent. Even a little teapot has to release steam at some point. Having finished our conversation, Amanda wanted to go on a ride.
Amanda is really good at trying to distract me when I get mad, but I was pissed. At first I said no to the ride, but seeing her disappointment I told her okay. So, I scootered over to the ride and its exit and asked the employee if we can go on. She said yes, just right around the corner there are stairs you go up and then I can get on the ride. I assumed that I had to walk it with my cane. As I entered the narrow exit gate and bypassed her chair, umbrella, cooler, and snacks, we reached the corner. I looked at Amanda and said I am going to be hurting. To a normal person I guess the stairs were around a corner, but to a slow person on a cane I might as well have signed up for a triathlon. I was determined to go on the ride for Amanda’s sake, so we slowly walked down and began climbing the stairs. While the pain was already settling in, the gentleman at the top asked us, “Why didn’t you take the elevator?” I told him because the person at the front did not mention it. My wife was now getting angry. The gentleman then assured us to use the elevator when we get off the ride.
I made it back to my scooter after the ride and I told Amanda in a very loud voice, “Well no wonder she didn’t tell us to take the scooter back there. She has all of her stuff in the way.” Her items should be placed outside the exit so people in wheel chairs have room to get through. By this point I was ready to go home, I had enough. We eventually met up with Amanda’s brother and went on a ride, but at the first sight of rain, I took the opportunity to leave and go home.
After arriving home, I wrote a letter to Knoebels asking them: What is a disabled person supposed to look like? If I do not look like one on a scooter, with my ankles wrapped and cane in hand, exactly what does one look like? I wrote about the cop situation and asked them between the cop and themselves am I supposed to be crawling, looking beat up? Should I be disheveled and lose the light of life? Am I not supposed to be happy and smile? And most of all am I not supposed to look healthy? I then asked them what does it matter if someone had a surgery. How do they not qualify for a band? I had surgery, I had to be off my feet for 12 weeks 3 different times!!! I certainly could not have waited in lines! Would the person who had surgery have to turn around and go home?
I am still waiting for the owners to call me, but I have received a phone call from one of their managers. I told the manager I will not stop until I get a hold of the owners to talk to them about their policies and offer them sensitivity training. The manager apologized for everything and stated she will check all the exits of the rides. She stated she is disabled and that it is hard to tell that she is. I told her if that is the case then I would expect her employees to be more sensitive about the situation. Once the phone call was over, I did not feel satisfied with her answers. I will be following up with them.
This lesson I want to stress, is do not judge people by their appearance. If you see a person not using a turn signal, do not think they are lazy for not using one or that they are just being rude. Maybe they have hand controls and with one hand on the steering wheel and one hand on the brake and gas lever, maybe we could not safely get to it. If you see a person using a handicap space and they walk out of it, instead of damning them for using a space they do not deserve, maybe they are battling the pain inside while trying to keep a smile on their faces. Disabilities come in all shapes, sometimes a person may have a little pain one day and then be in a lot of pain the next day. There is not one face to disability there are many faces and mine is one of them.
I wrote this one day in December before my fourth surgery. I wanted to share it with everyone and thank everyone for following me and reading my posts:
Twas the night before surgery
and all through the house
Noone was stirring not even my spouse
Fasting this night I thought in my head
Eighteen hours until ill be fed
Trying to rest I layed in the bed
the thoughts of pain stirred in my head
Amanda said dont worry as she sat next to me
you need to get sleep its already three
A moment later there arose such a clatter
I woke up so fast to see what was the matter
Buzzing and beeping, I heard the alarm ringing
my head felt heavy, my ears were stinging
I looked out the window it all looked so cold
“You need to get up!” or so I was told
Tired and groggy , I zipped up my pants
How early is this surgery, I started to rant
We stumbled to the car, wiping our eyes
The stars were still out in the night sky!
Orion! Big Dipper!
Jupiter and Venus!
Taurus and Cygnus!
We started the car, miles and miles to go
How I was so glad to see no snow.
We hit the highway going past eighty four
Amanda’s foot was hitting the floor
The car took off as fast as a sleigh
That travels the world in just one day
In two hours or more the car came to a silence
We are here I exclaimed in a defiance
“Come on lets go!” Amanda persist
“Your chair is waiting don’t resist”
I unbuckled my belt with a sigh and a groan
I sat in the chair with a cry and a moan
Faster and Faster the wheels they went
Soon I thought we would be off the cement.
Inside the building we sat and sat
Then I heard my name and that was that
I kissed Amanda and forced a little smile
She said, “Don’t worry it will just be awhile.”
As the tubes were attached and the nerve shots were given
My thoughts were with her… then all was forgiven
Everything went black and I was out like a light
I hope this time everything goes right
First for people who do not know me, I would like to make a disclaimer: Please forgive in-cohesive sentences, grammar mistakes, and run on sentences. I have been running on three hours of sleep each night this whole week due to the pain I am having and I am medicated. So, in the world of Internet grammar police, please put the red pen down and enjoy the article.
When I started this page two days ago I started to realize I have a lot to share. There may be plenty of people out there like me. People who are going through pain for the first time and have no idea where to turn to or who to ask for help. I may reach out to someone to learn how to start a web page and a blog, so that I can share my experiences and be able to help them. This page is for my wife, but this article is for them.
I emphasize the period. You need to develop tough skin. I did not have it eight years ago when this all started. The first time I had pain in 2008 and needed surgery on my leg I thought it was going to be a one and done process. It was this thinking that made me hold back from asking for help. I also thought I would only be off of work for a few weeks and I would go back to living a “normal” life. I was prepared for therapy and the pain I had to endure to get back to work. I did end up going back to work for a short time, but it did not take long to realize that the first procedure did not take and I was on to surgery number two and off of work again. It was during this second time I learned I needed to develop though skin. What I didn’t realize is that there were going to be people out there, who did not believe me or doubted that I was in as much pain that I am in. No matter if it was one or two people who thought that, I can say it honestly hurt. I felt like maybe I was lying to myself about how much it hurt. I started to get worried what my friends thought and maybe what my family thought. I was not prepared for people to doubt me. Heading into Christmas, which was about a month later after hearing about the doubt people might have for the first time and my second surgery now completed, I was hit a second time in a month by a non-immediate family member. The person looked at me and stated, “Are they not ever going to fix you and how long do you plan on milking it?” Milking it??!! There is a cast on my foot! I was hurt, shocked, pissed, stunned, and angry all at the same time. At the time I just kept my mouth shut and shrugged it off. (Let me tell you if that happened today eight years later, it would have turned out much different due to my tougher skin). There have been many other examples but for the sake of condensing, I want to say do not be surprised if people try to downplay what you are going through or do not even believe you. Keep fighting for your health, ignore them, and get the help that you need. Seek out help from other people that have been going through the same thing. And do not be surprised if doctors are not the ones to give you that help, but that is another story for another time. If you need help I will help you build that tough skin.
It took a long time for a doctor to say maybe you should seek out pain management. I had medication from all of my surgeries to help with pain, but after none of it helped what was I going to do? Physical Therapy did not help, surgeries did not help, shots, tens units, non-prescription medication, there is nothing that is helping me at this time, except pain medication. I am currently thinking about acupuncture and preparing for a neurologist appointment. However, when I realized I was going to be put on medication, I knew it was going to take another layer of tough skin to keep me going.
Even to this day I have friends and strangers alike that tell me that they would never take pain medication regularly. If I heard that eight years ago, I would start doubting what I am doing. I would think, am I doing things right, should I be taking this medication if they wouldn’t? I guess people’s opinions use to affect me. Let me tell you, if you are reading this and you are in extreme amount or have chronic amount of pain and your doctor says take pain medication, I say look at all your options, decide with a doctor or a loved one what is best and if the decision is to take it, then take it. Work with your doctor to make sure you do not get addicted to it, which is always a possibility. People who say they would never take prescribe narcotics for pain or they tell you they would suck it up and just deal with the pain, truly never been in pain that required it. Do not let other people influence you from the help you need.
The best case in point is what happened in my state of Pennsylvania. Pain medication did not help their loved ones, let alone sucking it up. The people of this state fought and won to change the laws of PA to legalize medical marijuana. They knew what was available did not help the amount of pain some people were in and they knew there might be a solution to help their loved ones and they went for it. So, I say go for it and seek out any treatment you can to get rid of the pain you have. I am on doctor 17 coming up and I will go to doctor 18 if needed.
Reach out for help
This is short and simple, do not be stubborn like I was. Do not be afraid. Do not think about not asking for help. Just do it. Plain and simple, do it. No matter what it is in life not just medical, if you need help ask for it. You never know what you might receive if all you do is ask.
Thank you everyone please share this and my page. My wife helped me and continues to help me with my tough skin, certainly when it comes to riding a scooter in a crowd. That is probably where I have the weakest skin, of having everyone watch me or what I think everyone is watching me. She is the best and I do not know where I would be without her. Also, let me know what your thoughts are about starting an official blog. Thank you again!!