Advice and Thoughts
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!!