When it comes to this life, I believe that we are all here on earth to do something only we can do, this is our purpose. Purpose can be a challenging thing to discover. In a world full of distractions and static noise, we can so often loose sight of our purpose. To prevent this from happening, many turn to motivation. While motivational quotes and speakers serve a vital role in helping others discover their purpose, I believe there is a hidden danger in motivation. That is, motivation can only get you so far. Eventually, we must act on the motivation we listen to. If we tune into motivation but never act, we will be stuck in a cycle of inaction. In this cycle, we never change and yet we ask ourselves why we can’t do better. In this cycle we become so focused on motivation that we ignore the other side of the coin of change. This side is the side of personal action. It is only when we act on the motivation that we will become who we were made to be.
Over the past couple blogs, I have shared some very personal parts of my journey. While they are personal, I believe that if you take the lessons that are in the story, it can be a great benefit to you.
There were so many challenges on my journey, and it seemed that this last challenge was going to put me in the grave. But something changed, and I finally said enough with these negative thoughts. I made up my mind right then and there that I would win it at all cost.
Living and enjoying life to its fullest potential.
One of the most important decisions that I made during this time was to live and enjoy life to its full potential. Why was this decision so significant? There are many people in the world that we live in that do not live life to even a quarter of its potential and by the time they realize this. They are on their deathbed, and they die in the bed of wishes and regrets and their life will be remembered by what they were and not what they did and soon the memory of that person will be lost to time itself.
But how do you live and enjoy life to its fullest potential? Here are a few things that I did to start to live and enjoy life.
Take time to smell the roses. I know this is simple but enjoy the small things. The flowers that are growing in the field. Or the smell of the gentle summer breeze. Maybe it is the 5-minute conversation you have with a loved one or friend. There are so many roses that we can smell and most of the time we pass them by without giving them a second glance.
Give life your all and expect to get all life has for you. Whatever you do, do it with such gusto and life that even life itself will give you a hand in completing your goal.
Celebrate your accomplishments. This can definitely be a great thing to do, but it can have both a positive and negative effect and should be used carefully. If you celebrate too little you can make your major accomplishment seem small and get no fulfillment out of what you did. On the other hand if you celebrate too much you can lose sight of where you have come from and who you should have been. As I said it is great to celebrate your accomplishments but be careful as this can steal your joy and even your life.
Step out of your comfort zone-It has been said that greatness is just a step out of your comfort zone. This could mean trying to cook when you have never cooked. Or it could mean speaking in front of an audience and sharing your story. Whatever that could be, just be willing to take one step out of your comfort zone.
It was about August that I wanted to do something different, something that was out of the ordinary, and so I decided to throw my own birthday party. Yes I threw my own party and when I told my wife what I wanted to do she said that I was conceited. Which was probably true, but sometimes you earn the right to be a little conceited. Now don’t do it all the time for it will hinder you but once or twice in a lifetime can’t hurt. By the time the party was planned we had all the food picked out. I tried to make sure that I had food that was kidney friendly so that I could keep my phos down. The months after I was told my phos was too high I did what was supposed to do and managed to get it down a little with eating better and also some phos Binders. If I remember correctly, we had tacos that night and also decided that I would make a homemade tortilla shell. This was something new even though I cooked this was something out of my comfort zone. What a wonderful party it was and one that will be remembered for a long time.
During the evening my cousin and I were in the music room jamming. He was playing the piano and I can’t quite remember what I was playing, banjo or melodica. But it was during this time my brother-in-law’s wife came in the room and was listening to us play and requested us to play some Disney songs. Which we did with as much gusto as we could muster. After we finished she said” Anthony I have been wanting to talk to you all night.” I am thinking of what is going on here. She said I have had this burden since spring time about March/. April and my husband and I talked about it, prayed, and counseled about it and I feel this is the way I am supposed to go. Anthony, I want to donate my kidney to you. I am an O+ and you are an O+ and this is going to work. How do you reply to this, what do you say, what do you do. Did I thank her, hug her, cry well? I did none of those in fact I just stood there not knowing what to do other than to give her my transplant coordinators numbers.
Wait a minute did I hear her right she said spring time right march/April? Yes she did that was the time that I found out about my phos and when I heard that I had 6 months.to live. Coincidence I think not in fact I believe that this is something special. At the end of the night my wife and I talked about not really knowing what to think but excited at the prospect of the great things to come.
Lessons: In this blog I want to share with you a few lessons from this experience
The answer is usually hidden behind the hardest challenges. Had I decided to give into those awful thoughts and give up where I would have been? I would have been right where my mind tried to place me in the casket. Instead, I fought through those battles and because of that I am where I am today in a much better place.
Listen to the still small voice of life.- This is something that I observed from my donor by what she said. I have had this burden since springtime about march/. April The still small voice of life spoke to her, and she listened. This can be hard for many because the noise of the world is loud and boisterous and if you are not listening you will miss that still small voice and the positive impact you could have made will disappear never to come again.
While these are just a few lessons if learned they can make a positive impact on your life and the life of others around you. What a wonderful time this was, and I am glad that I traveled on even though the path seemed impossible to pass through.
Until next time there are a few things you can do. First subscribe to the blog, so you don’t miss any new and exciting content. Share what you have learned as it may help someone along the way and finally “Stay encouraged along your journey, you my friend are one step closer to the next peak.”
To truly Own It and advocate for your medical care you have to accept responsibility. In my view, accepting responsibility is one of the hardest things for anyone to do. It is one thing to be responsible for your medical care when everything is going well. However, when you are faced with medical challenges, it can be hard to take responsibility. You may be more tired than normal, you may not like the way a medication makes you feel, you may be questing why you must go through hard times in your life. If you are going through medical challenges the best thing you can do is take responsibility. When you take responsibility for your medical care, you will be able to navigate the medical world with confidence. In this post we are going to explore a few ways you can start to take more responsibility for your medical care and Own It.
Step 1: Be on Time
Of all the steps of becoming your own best medical advocate, one of the most important is being on time for your medical appointments. When you are scheduled for a medical appointment, there are others who may be scheduled for appointments after your scheduled time. If you are late you may have to wait longer to see your doctor. Being late may also lead to you being more frustrated at yourself and this is not beneficial to your physical health or mental health. So, if you are scheduled for a medical appointment, be on time. If you are running late, let your doctor know so they can plan accordingly.
Step 2: Know Your Allergies
While we are on the topic of self-advocacy it is important that we consider the importance of allergies, specifically medical allergies. If you are allergic to latex or specific medications it is important that you tell your doctors. Even if you are in a medical setting that you are familiar with still make your allergies known to your medical team. If you are in the outpatient setting you may be given a list of what is in your electronic medical record file, or this information may be in print form. Either way, make sure to take time to carefully look over this information and make any changes that need to be made.
If you are in the emergency room, it is even more important to make your medical allergies known. In the emergency room, there is an added level of urgency. If you are allergic to an antibiotic and your medical team in the emergency room does not know this, you may be given that medication by accident. After this occurs, you may experience a wide variety of side effects (each at a different level of severity). If you are in the emergency room and not able to communicate with the medical team, make sure someone is with you who can do this for you (preferably a friend or close family member).
In summary, know your medical allergies, tell your medical teams about these allergies and make sure those close to you know these allergies in the event you are not able to speak for yourself.
Step 3 Know your Medications
When it comes to knowing about the medications you take, it can become overwhelming to keep track. Each medication you take may be taken on different days, times, and variances. If you take multiple medications, or if you only take one, it is important to know about your medication. Specifically, it is important to know how much you take, when you take the medication and why you take the medication. Is also smart to know what can happen if you don’t take the medications or skip a dose. In my experiences this information is something I learned from my doctors. If your doctors are not talking to you about the medication you take, you shouldn’t wait on them to have the conversation. After all, this is your medical care! So, speak up and get this information. After you get this information write it down.
Step 4: Write it Out/ Take Notes
In an ever-increasing digital age, taking hand notes has fallen out of style. Even if you aren’t one to write things down, you now is a great time to start this habit. If you have access to a computer and printer, I recommend making a graph of each medication you take and important information about each medication. I would also encourage you to take notes when you visit your doctor. Writing notes is important because it can help you remember key information from your appointment after you leave. After you have taken notes, make sure that you make a copy of these notes and print it out for your reccords.
Step 5: Be Organized
When it comes to navigating the medical world with confidence, it is important that you be organized. If you are already organized, that is great. If you have never had an organization system for your medical care, now is a great time to start. In my own experiences I have found that creating a medical binder is a great tool to help you stay organized. In this binder you can keep notes from your doctor appointments, copies of standing (current) lab work orders, a list of medications you take, and so much more. When creating this binder, use the organizer tabs and other organization tools to personalize the binder for your exact needs.
After you complete your medical binder, be sure to take this binder with you to your medical appointments. When you do this, you will be a step ahead of everyone else because yo will have quick access to important information if you should need it durring your medical appointment. Doing this is especially important when you are going to a new doctor who has limited information about your medical history. Even if you never use the binder in your medical appointments, yo will be able to sleep good at night knowing that you know where key medical information is if you ever need it.
Step 6: Speak Up
When it comes to owning your medical care, it is important that you use your voice. I know this may seem obvious, but I am consistently surprised at how many people show up to their medical appointments and never actually speak up. These people just sit around and pretend that they are powerless. The reality is that we all have personal agency, some just choose to use it and others don’t. When we don’t use our voice, we relinquish our personal agency and allow others to speak for us. When we don’t use our voice, we become passive in our medical care. Instead of this, choose to take part in your own medical care. If you have questions, ask them. If you have concerns, make them known. You have a voice and how you use that voice to advocate for yourself matters. At the most basic level, using your voice will mean the difference between being a consumer of medical care and being an active participant in your medical care. When we are actively involved in our medical care, we choose to Own It and take responsibility for the parts of our life we can control. The way I see it life is 10% what happens to us and 99% how we react. So, choose to speak up and Own It.
The Big Idea: To be your own best advocate for your medial care, you need to take responsibility. This starts by recognizing that you have an opportunity to be actively involved in your medical care. When we choose to stay on the sideline of life, we end up allowing others to speak for us. This may be good for a short time but active passivity is not a long term solution to the medical challenges you are experiencing.
“Active passivity is not a long term solution to your medical challenges. To truly own it you must take personal responsibility for what you can control, yourself.”
How do you pull yourself up out of a valley so low that you can not even see light from the sun? Simple, stop looking down in the valley and start looking up.
In this blog I want to talk a little bit about high phosphors, calciphylaxis and what it can do to someone from my point of view. Now, I am no doctor or a nurse, but I do remember what I was told. When you are on dialysis, there is a way that you need to eat to maintain a healthy lifestyle. While there were many things I needed to watch with as a dialysis patient , I especially had to be careful with. Phosphorus and Potassium, if either one of these levels went to high for me. I could get really sick even to the point of death. While my potassium was fine, my phos went up to 9-10, normal range is 3-5. With phos that high there is a good chance that I was going to develop calciphylaxis which is a hardening of the blood vessels if you want to know more about this you can find more information by clicking this link https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559 .
Knowing that a high phos level could cause some pretty terrible things to happen to me. I took it very seriously. One of the first things I needed to do was to change my diet and go back to being careful like I was when I started.
Here is an interesting thought: my comfortability allowed my carefulness to turn into carelessness. I had gotten comfortable, but the Doctor made me uncomfortable with his prognosis, which had caused me to become once again careful. I know I just went around Robin Hood’s barn, but you get the idea.
That night I started to look very closely at my diet and realized that I had been eating the wrong foods, and right then I changed my thought process of what I was eating. While this did help, I needed extra help and the Doc had prescribed me a medication that would help get the phos down.
There was one drawback: this particular medication was quite pricey. In fact, the last time I tried to pick it up, the pharmacy would not let me take it away without first giving them over $3,000 dollars. That will make the moose lose its antlers, lol. Anyhow, the next day, I called my insurance to see how much they would cover for this medication. When I reached the agent, I asked them how much would they cover? Just a minute, Mr. Reed, let me check. As she was getting the information, my heart started to beat faster, and I was getting ready for the disappointing news. Mr. Reed, for this medication you will owe nothing, it is completely covered. I hit the floor with tears running down my face. You don’t know what this means to me. I said this will save my life. By the end of the conversation, both her and I were in tears. But it was not tears of sorrow, but tears of Joy.
I sometimes wonder where that insurance agent is today. I wonder if she really knows the difference she made in my care, and I wonder if she knows that she did not just impact me, but also those that were around me. Furthermore, I want to say here is you reading this is the one that I talked to that day. Thank you truly helped me that day, and you have forever changed my world and the people around me.
I have heard many people that say that life goes with you or without you. How true this statement is and it became especially true during the spring in 2016. After finding out that my phosphorus was so high and that if something did not change there would be dire consequences. It was a tough time. There were 2 ways that I could look at it.
Get down in the mulley grubs and fall into depression and let life pass me by and then I pass away from this life.
Or pull myself by my bootstraps and hock my britches up and continue to keep moving forward
To which I decided the second option was best. It did not mean that every day was sunshine and roses after I made that decision. In fact, almost every day was a struggle. A struggle to get up and keep moving, a struggle to paste a smile on my face and act as though nothing was wrong, a struggle to hide this battle from those around me.
It was not long after the experience in my music room that I was asked to play the keyboard in a public setting. How can I play a song when I have no song, I asked myself. It was then my fingers found the song that my heart needed and soul desired and here are a few lines from that song.
Many things about tomorrow, I don’t seem to understand. But I know who holds tomorrow and I know who holds my hand.
As I was playing this part of the song, I could feel every word that I was playing. By the time I finished there was very few dry eyes in the building. Why because I felt the song to the very core of my soul. No matter what tomorrow would bring I knew it would be ok and that I would move on with life.
When you hear the word advocate, who do you think of? Maybe your view of an advocate is a social worker who helps someone in a time of need. Maybe you think about a politician or non-profit organization that supports a cause important to you. Whoever you view as being an advocate, I think that the main theme is that your view of advocate is someone who is focused on improving the wellbeing of another person (that person may be you or someone else). In the case of this blog series I am not defining advocate in this way. Instead, I am using the word advocate to define someone who uses their voice to speak for themselves. It is my hope that this series will give you the tools to not only speak for yourself but to also confidently navigate the medical environment.
The Journey Ahead
Before we continue in this new journey of self-advocacy, I think it is important for us to consider a few questions. These next few questions are designed to help you reflect on your own self-advocacy journey. Most importantly, these questions are going to focus on helping you find some areas of growth potential in your own self-advocacy journey. If you are just starting out or you feel like yo could do better in how you advocate for your medical needs, don’t worry. I believe we are all on our own journey of self-advocacy and we don’t need to have it all together. In order to Own It you simply need a willingness to learn and dedication. This dedication is not to anyone else except yourself. You have the power within you to be the change you want for your life. The question is simple. Will you own It?
Who advocates for your health needs/do you advocate for your health needs?
Are you confident talking with your doctors about your unique medical circumstances (your current medical challenges)?
Do you feel confident talking to your doctors if you have questions or concerns?
If you have a specific medical condition, do you know how that condition impacts your body?
How can you use this series to become a better self-advocate for your medical needs and truly Own It?
Are you ready to take your career, your business and yourself to a new level.
The Kidney Trails Team is excited to be able to host the virtual “Building you in 2022” Conference November 3rd-5th 2022
You will hear from the top voices in the Renal, Personal development community. Fill the form down below to register and type in Buildingyou2022 To reserve your spot at the KT Building You Conference 2022. Seating is limited so get your ticket now.
Most of the time when the going was through, I would go to one of my hiding places. A hiding place is somewhere that I went to try sort through what everything I was facing. Most of the time I would go to my music room and play my keyboard and was able to sort through it all very quickly…
But this night there was no hiding place, no comfort to be found. After my wife went to bed, I went to my music room. As I sat down at the keyboard and placed my hands on the keys. Not a song could be found and nor a melody found that would comfort the very soul. It seemed the song of hope and joy that I had was taken away and replaced by the possibility of losing this fight. As my fingers sat on the keys unmoving. The tears fell from my eyes and trickled down my cheeks on to the ivories, and they played a song and melody that only the master could understand and hear.
You see the tears came from the depths of my heart and created a song so sweet that it touched the master heart, and a peace flooded my soul, and I knew that I would make it. To most it would have looked as though I had given up and they looked like tears of despair and hopelessness. But to the master it was the tears of a lesson learned and also the tears of the grit and determination to keep moving.
If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl. But whatever you do just keep moving forward.
Dr. Martin Luther King
Though I did not know the road ahead and what it was ahead there was no doubt that I was going to keep moving.
Sometimes our greatest challenges in life may bring us to tears and it may seem all is lost but know that life takes notice and help will come but it up to us to dig down to the depth of our very soul and find the grit and determination to keep moving forward. While this night was difficult it was just the start of one of the longest and grueling battle that I had ever faced and if I did not win this battle there was no coming back and my life would be no more.
Until next time there are a few things you can do. First subscribe to the blog so you don’t miss any new and exciting content. Share what you have learned for it may help someone along the way and finally “Stay encouraged along your journey, you my friend are one step closer to the next peak.”
In the previous post, I discussed the importance of not buying into the low expectations others place on you. When I was in high school, I did not do a good job of drowning out the negative voices in my life. It wasn’t until I was a Junior in highschool that I had learned how to overcome the bigotry of low expectations. Thankfully, I had the benefit of having positive voices in my life that provided an important counterbalance to the lies I was being fed. That said, there was one low expectation I just could not get over. That expectation was that I was not fit for college. By the time I graduated, I had no idea of where I would go, what I would do, or who I would one day become. In many ways, I questioned if I was enough. Could I really push the limit of what I thought was possible? I would only know if I took a leap.
When I started my sophomore year of college, I had become someone I never thought I Would be. No longer did I buy the lies that said I wasn’t enough. No longer did I let others define for me what I could do. With the help of tutors, mentors, and excellent teachers, I stood ready to step into who I was made to be. Beginning in the middle of the year, I started looking at colleges where I could transfer and continue my education. I was mostly considering small schools. After looking at many schools, I found that none of the small schools interested me. So, I started considering larger universities. Ultimately, I chose to apply to the University of Georgia. A few months after applying, I got the official letter of acceptance. When I read the letter, I couldn’t help but think back to all the people in my life who said I would not be enough. This letter was physical evidence that these individuals were dead wrong. This was my vindication. My chance had finally come to show what I was made of.
Between the Hedges
On day one of classes my life between he hedges began. With the help of my academic advisor, I selected a major and began my journey between the hedges. At that time, I wanted to go into the field of child life. After considering a few majors, I ultimately decided to major in Human Development and Family Sciences. In the two remaining years I spent at the University of Georgia, I learned from incredible professors and truly found a new home within the college of Family and Consumer Sciences. In the process of completing my undergraduate education, I made a key decision. That is, I chose to no longer pursue Child Life as a profession. In my view, I wanted to focus on the challenges transplant patients experienced within and outside the clinical setting. After much research and reflection, I decided to apply to social work graduate programs. Shortly before graduation, I found out that I had been accepted to the Social Work program at the university of Georgia.
On the day I graduated from the University of Georgia, I had mixed emotions. While I was excited to graduate, I couldn’t help but think about my transplant friends that never lived to have the chance to attend college. As the fireworks went off at Stegman Stadium, I looked into the night sky and had a powerful thought. I’m not done! I was about to go to my next stop. At this stop in my journey, I would face the unknown territory of graduate school.