Supporting Matt's Comeback Story
Donation protected
Introduction:
Hi my name is Jean and this is a go fund me page for my friend Matt, his wife Nikki, and their son, Fox. Matt is a very active member in the coaching community and it is through that community that we met last year in Austin, TX. Matt makes an amazing positive impact in the lives of those who know him, and what impressed me immediately upon meeting him is his positive nature and zest for life.
Matt’s story is our story. He is a proud father, husband, coach, friend, son and brother. He is hard working, dedicated and committed to making the world a better place by being of service to his church, his clients, his family, friends and everyone he meets. And like many of us Matt has an “invisible” illness. What that means is that he seems and looks healthy when you meet him, but in reality he is fighting an internal battle both physical and emotional which can take all of his energy to lead a “normal” life because Matt has Addison’s disease. The energy to live that “normal” life is becoming increasingly harder for him to manage on his own.
What is Addison’s Disease:
Before meeting Matt I didn’t know about Addison’s disease, but have since researched it after seeing the horrible ways in which it affects my friend’s life: extreme fatigue, debilitating seizure like muscle spasms, confusion and massive mood swings. According to the Mayo Clinic, “Addison's disease is a rare disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well. Addison’s disease can be life-threatening.” To sum it up, Matt’s body is unable to properly protect itself from both physical and emotional stress. Stress in either situation can quickly lead to an Adrenal Crisis which untreated quickly can send his body into shock, coma, or death. What makes this even more challenging is that Addison’s is not a one size fits all disorder and can be very complicated.
Putting the Puzzle Pieces Together:
It has been almost a 10 year road to get diagnosed and there are still more questions to be answered; however, as you can imagine, it has taken an intense toll on Matt and his family. Since the beginning of the New Year, Matt has made two trips to the emergency room to be treated for adrenal crisis symptoms. On his most recent visit, January 12th, Matt was found by his 2 year old son lying on the floor of their closet and was unable to get up on his own and needed a stress shot of steroids by the hospital in order to be fully alert and functional again. In addition to Addison’s Matt has also been diagnosed with a severe hormone deficiency, sleep apnea, narcolepsy, cataplexy, digestive issues, and colonic muscle spasms which have contributed to two major back injuries within the past 2 years – including one that required an ambulance and left him in the hospital for a week. All of these things are pieces to the puzzle of what is happening in Matt’s body and how find a way forward to proper treatment.
A Family Thriving Through the Challenge Together:
The past three years have been filled with beautiful highs and challenging lows. On April 29th 2013, their son Fox was born. Matt’s Dad, Stepmom, and Sisters were there visiting from Maine, anxiously waiting to meet Fox; however, the birth was extremely challenging and at one point, Matt was unsure if Nikki or Fox would survive. Thankfully both came through but the pregnancy left Nikki in the hospital for over a week, severely injured, and out of work for well over a year. It was only a couple weeks later while Matt was on a business trip, that Fox required emergency surgery on his stomach, which thankfully was a success. By the first week of June, Matt’s mother was visiting from Maine and Fox had just turned a month old and the family celebrated; however, a couple days later, Nikki received word that her Grandmother passed in Maine. Still injured, Nikki was physically unable to travel with Fox but would return home by June 6th. Prior to her flight back to Texas on the 6th, Matt received the call that his Dad passed away that morning from a massive heart attack. The loss was unexpected…Matt was very close to his Dad; however, he is also very close to his mom and it was a blessing that she was there to support him and Fox. The bills began to grow out of control as Nikki and Matt both continue to work through health issues. By February of 2014, Matt spent a week in the hospital with a herniated disc in his lower back which required a year of physical therapy and two epidural shots, only to re-injure it in July of 2015. By April of 2015 Matt had to take medical leave from his previous job as a retail district manager because of his growing health concerns.
Current Situation:
Matt’s short term disability ended in early October and his long term disability case has been very complicated and was recently denied; however, he is continuing to pursue that course of action. Matt has enjoyed pursuing Life Coaching through this challenging time as it is a positive activity and good for his stress; however, he is unable to dedicate anymore additional energy to it and needs to focus on his health. In the past three years the medical bills have been piling up, the credit cards have been maxed out, and they are now working with the mortgage company in hopes of not losing the home they built to start their family. Nikki has taken on multiple jobs during this time while also watching Fox since they are unable to afford childcare. It is a lot for her to carry as she is supporting both Matt and Fox while also contributing. They are working together to find solutions, including taking on a roommate to help ends meet but they need our help!
The Road to Recovery and How You Can Help:
If you are anything like me, it can be easy to feel helpless with situations like this but your donation, no matter how big or small, will help Matt and his family. Donations will be used to pay Matt’s medical bills (new and old), mortgage payments, and living costs to help support him and his family during their road to recovery. Matt still has a big journey ahead of him, which may include a trip to the Mayo Clinic; however, with proper treatment, rest, and reduced stress, a year could make a big difference in Matt’s health.
As you can imagine, it took a lot of courage for Matt to put aside his fears in agreeing to ask for help. It takes a big person to be open to receive help from others and I know our community will come together and help in any way we can.
This is my first GoFundMe page but I know that has an amazing support system and that we, as a community, can help him and his family. WHETHER PRIVATELY OR PUBLICLY, PLEASE FEEL FREE TO SHARE THIS WITH OTHERS.
Thank you for your prayers, considerations, and donations!
If you would like additional information about Matt’s story please comment below.
To find out a little bit more about this amazing family, in Matt’s own words, please read below:
From House to Home
It was early fall in 2012 when my wife, Nikki, came down the stairs with a massive smile on her face…she was pregnant. We were so excited! We couldn’t wait to tell our family back in Maine. Most people in our family started to wonder if we would ever have kids! Growing up in Maine, Nikki and I had first met when we were both 15 at a Jujitsu class my step-father ran. After a couple years of competitive fighting, training, and flirting, we started dating by our senior year of High School. We both attended Thomas College in Maine and by the summer of 2005 I married my best friend. In 2006 I was offered an opportunity with work to move to Austin, TX and we both jumped on the opportunity. After years of dedicated hours on the road for work I had a major shift in priorities and we were ready to start a family. I had always wanted to be a Dad and when I heard the news that we would be expecting a baby boy in April of 2013, my heart was flooded with love for this little boy that I hadn’t even met yet.
At the time Nikki was a successful personal trainer in Austin, TX and I was a District Manager in retail. My job required me to travel about 25 nights a month; however, I made sure that I would be available for all of the doctor’s appointments and birthing classes…I was so excited to be a Dad; however, I think my Dad was even more excited to be a Grandfather! With the new addition to our family on the way we started to look at relocating to a different part of Austin. I swear we looked all over the place…our agent was amazing and very patient. It was on a Sunday when we spent a good 8 hours looking at homes with our agent and we were ready to give up on the whole idea until she recommended one other option. We pulled up to just a wooden frame of a future home…we never considered building but this home was going to be perfect for our new family. It was the most amazing experience to see it all come together…we visited it every weekend as it was being built, and as the house was moving along, so was the pregnancy. By early December we officially moved into our new home. It was a really special Christmas that year.
By April of 2013 we had it all planned out…our son, Fox Henry Gagnon, was due on the 15th and my Dad, stepmom and two sisters would come by about a week after the birth to visit. That’s only if things worked out as planned…My Dad and family arrived on schedule to visit; however, Fox did not…he held out until the 29th of April. I remember that my family actually had to extend their trip in order to be there for the birth…and I am so glad they did. We all arrived at the hospital and waited patiently for Fox to officially join our family; however, the birth didn’t go as planned. It was an intense experience that involved some emergency procedures but by the end of the day both mom and baby were alive. Some of my favorite memories from that day were holding my infant son against my chest with my shirt off and sitting next to my Dad as he held my little boy. It was a perfect moment…my Dad was my best friend and to see him holding my son filled my heart. A few days later my family packed up and headed back to Maine. While I enjoyed the time with my family, it was the pregnancy that was truly challenging. There were many unexpected challenges that quickly turned the experience from “this is the greatest day of my life”, to “I don’t know if they will make it”. While Nikki was in surgery, I waited in the hospital room until my beautiful baby boy was wheeled into the room…healthy and just gorgeous. Nikki was not with him…so immediately removed my shirt and held my baby boy against my skin…we had just met and I already loved him more than anything else on Earth. Nikki came through after a couple hours but was severely injured from the pregnancy and we spent over a week in the hospital. The injuries were so challenging that they kept her from working for well over a year. By the first week of June, Nikki received the call that her Grandmother passed away back in Maine. Since she was still healing, she was unable to travel with our son, so he would stay with me and luckily my mom was in town visiting as well. Nikki was going to be gone for about a week and fly back to Texas by June 6th; however, on the morning of June 6th, I received the call from my stepmom…my Dad had a massive heart attack and was gone. He was my best friend…he was only 61. I also lost my Grandfather at the age of 61. The two blessings through all of this was on June 5th I talked to my Dad over the phone, not knowing it would be the last time but it was a blessing to say “I love you” one more time. The second blessing was that my mom was visiting from Maine and was with me when I heard the news the next morning. Her love and support gave me the strength to get on a plane that night and fly back to Maine while she flew back with my infant son two days later.
After a few weeks we returned to Texas and I was back traveling for my job. We had only budgeted for Nikki to be out of work for a few months; however, she needed a lot more time to heal. We had an additional scare when our son needed emergency surgery on his stomach due a complication that can happen in boys. We began to take on a lot of debt, and before we knew it, our credit cards were all maxed out. On top of it all I was beginning to have a lot of health issues around my energy levels. One major breakthrough for our family was during the fall of 2013 when we found LifeAustin Church. As soon as I heard the music playing at our first service, I knew that we had found a church to call home. Nikki and I quickly fell in love with LifeAustin and became volunteers every Sunday – Nikki worked with the infants and I worked with the elementary kids. Our hearts were healing at LifeAustin; however, by February of 2014 I bent over to put my shoes on and upon standing up I felt the most excruciating pain in my lower back. I could barely walk without screaming…I ended up collapsing in my living room, shaking violently until the ambulance came. I had herniated my lower back but it was the muscle spasms that were the biggest concern…I had the most violent spasms the hospital staff had ever seen. They kept me in the hospital for a week followed by a year of physical therapy and a few epidural shots…we took on even more debt due to my injuries. Even with all the challenges, one thing was for sure…I knew that something had to change in order for me to be more present and healthy for my family. While still working full time in retail, I also began serving others as a Life Coach. I wanted to show my son that it’s never too late to follow your passion in life and that you can also write your own comeback story. I never felt more alive and filled with purpose that when I was helping others achieve their dreams.
We began to make some progress in getting back on track; however, by early 2015 I was feeling extreme fatigue, mood swings, dramatic changes in my weight and appetite, and severe muscle spasms throughout my body. My doctor’s couldn’t understand what the issue was except that my body was struggling to produce hormones. I was also struggling to stay awake every day…I felt terrible that I couldn’t be my best self and support my family. By April 10th of that spring I was informed by my neurologist that I had Sleep APNEA, Narcolepsy, Cataplexy, along with my already diagnosed issues with colonic muscle spasms, hormone depletion, and ADHD. I called my company on that day and decided that it was time to focus on my health and go on medical leave. During that time I began to focus on all things that would reduce stress and support my health. A major piece to that was continuing my involvement with the coaching community. I was able to spend more volunteer time at my church, build a stronger inner circle of friends, and being home more with my wife and son. I was living my life and honoring my values; however, my disability checks were barely enough to support us. While I was living a more fulfilling life by serving others, I was still struggling silently with my health. My mood swings were getting worse and I was feeling more intense bouts with depression, muscle spasms, and weight loss/gain. It was like having an invisible disease…I looked healthy on the outside but on the inside, I was experiencing an intense battle. In addition to all of this, I reinjured my back on July 4th; however, I was able to recover a lot quicker this time.
Things became even more complicated by late October of 2015 when my doctor finally diagnosed me with Addision’s Disease. Addison’s is a rare disease that in essence means my body is no longer producing the hormones needed to support me on a day to day basis…especially during stressful situations. In a normal person during a stressful situation, the body would produce cortisol; however, my body does not which means that when I experience stress, I am at a high risk of going into an Adrenal Crisis. Being in an Adrenal Crisis can be life threating if not treated quickly. There is not a cure for Addison’s; however, there is treatment. The side effects are also complicated and intense…it is not a one size fits all disease. I have found that the depression and mood swings are the most difficult to deal with. A few weeks after my diagnosis, my insurance company denied my long term disability claim (which is in the appeal process now). I have had days where I feel great and then there are days when I cry all day due to the unexpected bouts of depression. I have random muscle spasms that look like seizures, get easily confused during stressful situations, have had days where I stay in bed all day, and experience massive mood swings, combined with drastic swings in my blood pressure. I have gained a whole new insight into what it is like to live with an invisible disease…I look healthy and happy; however, under the surface I am working through a lot of challenges. One thing is for sure, I refuse to believe that I am going to give up and let this beat me…I am going to overcome this and I am going to use this experience to serve others someday. However, financially, I am no longer able to keep up with our bills. My credit score is non-existent as I negotiated with all our credit card companies a year prior to reduce our interest to almost 0% in exchange that we close the card and then we also fell behind on those agreements. We have taken on an extra roommate to help make ends meet but I my family is still struggling through this. Since the beginning of the New Year, I have made two trips to the hospital with Adrenal Crisis symptoms.
I am looking forward to beating this but also looking forward to getting back to doing the things I love most in life as a father, husband, and coach. I just need help and I need time to heal. I also believe the words we use make a difference and after this letter, you will not hear me say the words, sick, disabled, disease, illness, or disorder. This is a journey for me and my family and there are lots of lessons to learn along the way…the biggest lesson I am learning, and the one my friend Jean has helped me learn, is how to ask for help without fear of judgment and how to receive it. To anyone who is reading my story, know this: I am deeply humbled and grateful by your support…there are not enough words to express my gratitude, but with a full heart, I can say thank you. No matter what, I have dedicated my life to honoring my faith, family, values, and working to serve others. In the coaching world, we create life purpose statements. My life purpose statement is “I am the Courageous Heart that passionately beats to empower the hurt, broken, and lost”. Thank you for being a part of my journey.
Hi my name is Jean and this is a go fund me page for my friend Matt, his wife Nikki, and their son, Fox. Matt is a very active member in the coaching community and it is through that community that we met last year in Austin, TX. Matt makes an amazing positive impact in the lives of those who know him, and what impressed me immediately upon meeting him is his positive nature and zest for life.
Matt’s story is our story. He is a proud father, husband, coach, friend, son and brother. He is hard working, dedicated and committed to making the world a better place by being of service to his church, his clients, his family, friends and everyone he meets. And like many of us Matt has an “invisible” illness. What that means is that he seems and looks healthy when you meet him, but in reality he is fighting an internal battle both physical and emotional which can take all of his energy to lead a “normal” life because Matt has Addison’s disease. The energy to live that “normal” life is becoming increasingly harder for him to manage on his own.
What is Addison’s Disease:
Before meeting Matt I didn’t know about Addison’s disease, but have since researched it after seeing the horrible ways in which it affects my friend’s life: extreme fatigue, debilitating seizure like muscle spasms, confusion and massive mood swings. According to the Mayo Clinic, “Addison's disease is a rare disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison's disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well. Addison’s disease can be life-threatening.” To sum it up, Matt’s body is unable to properly protect itself from both physical and emotional stress. Stress in either situation can quickly lead to an Adrenal Crisis which untreated quickly can send his body into shock, coma, or death. What makes this even more challenging is that Addison’s is not a one size fits all disorder and can be very complicated.
Putting the Puzzle Pieces Together:
It has been almost a 10 year road to get diagnosed and there are still more questions to be answered; however, as you can imagine, it has taken an intense toll on Matt and his family. Since the beginning of the New Year, Matt has made two trips to the emergency room to be treated for adrenal crisis symptoms. On his most recent visit, January 12th, Matt was found by his 2 year old son lying on the floor of their closet and was unable to get up on his own and needed a stress shot of steroids by the hospital in order to be fully alert and functional again. In addition to Addison’s Matt has also been diagnosed with a severe hormone deficiency, sleep apnea, narcolepsy, cataplexy, digestive issues, and colonic muscle spasms which have contributed to two major back injuries within the past 2 years – including one that required an ambulance and left him in the hospital for a week. All of these things are pieces to the puzzle of what is happening in Matt’s body and how find a way forward to proper treatment.
A Family Thriving Through the Challenge Together:
The past three years have been filled with beautiful highs and challenging lows. On April 29th 2013, their son Fox was born. Matt’s Dad, Stepmom, and Sisters were there visiting from Maine, anxiously waiting to meet Fox; however, the birth was extremely challenging and at one point, Matt was unsure if Nikki or Fox would survive. Thankfully both came through but the pregnancy left Nikki in the hospital for over a week, severely injured, and out of work for well over a year. It was only a couple weeks later while Matt was on a business trip, that Fox required emergency surgery on his stomach, which thankfully was a success. By the first week of June, Matt’s mother was visiting from Maine and Fox had just turned a month old and the family celebrated; however, a couple days later, Nikki received word that her Grandmother passed in Maine. Still injured, Nikki was physically unable to travel with Fox but would return home by June 6th. Prior to her flight back to Texas on the 6th, Matt received the call that his Dad passed away that morning from a massive heart attack. The loss was unexpected…Matt was very close to his Dad; however, he is also very close to his mom and it was a blessing that she was there to support him and Fox. The bills began to grow out of control as Nikki and Matt both continue to work through health issues. By February of 2014, Matt spent a week in the hospital with a herniated disc in his lower back which required a year of physical therapy and two epidural shots, only to re-injure it in July of 2015. By April of 2015 Matt had to take medical leave from his previous job as a retail district manager because of his growing health concerns.
Current Situation:
Matt’s short term disability ended in early October and his long term disability case has been very complicated and was recently denied; however, he is continuing to pursue that course of action. Matt has enjoyed pursuing Life Coaching through this challenging time as it is a positive activity and good for his stress; however, he is unable to dedicate anymore additional energy to it and needs to focus on his health. In the past three years the medical bills have been piling up, the credit cards have been maxed out, and they are now working with the mortgage company in hopes of not losing the home they built to start their family. Nikki has taken on multiple jobs during this time while also watching Fox since they are unable to afford childcare. It is a lot for her to carry as she is supporting both Matt and Fox while also contributing. They are working together to find solutions, including taking on a roommate to help ends meet but they need our help!
The Road to Recovery and How You Can Help:
If you are anything like me, it can be easy to feel helpless with situations like this but your donation, no matter how big or small, will help Matt and his family. Donations will be used to pay Matt’s medical bills (new and old), mortgage payments, and living costs to help support him and his family during their road to recovery. Matt still has a big journey ahead of him, which may include a trip to the Mayo Clinic; however, with proper treatment, rest, and reduced stress, a year could make a big difference in Matt’s health.
As you can imagine, it took a lot of courage for Matt to put aside his fears in agreeing to ask for help. It takes a big person to be open to receive help from others and I know our community will come together and help in any way we can.
This is my first GoFundMe page but I know that has an amazing support system and that we, as a community, can help him and his family. WHETHER PRIVATELY OR PUBLICLY, PLEASE FEEL FREE TO SHARE THIS WITH OTHERS.
Thank you for your prayers, considerations, and donations!
If you would like additional information about Matt’s story please comment below.
To find out a little bit more about this amazing family, in Matt’s own words, please read below:
From House to Home
It was early fall in 2012 when my wife, Nikki, came down the stairs with a massive smile on her face…she was pregnant. We were so excited! We couldn’t wait to tell our family back in Maine. Most people in our family started to wonder if we would ever have kids! Growing up in Maine, Nikki and I had first met when we were both 15 at a Jujitsu class my step-father ran. After a couple years of competitive fighting, training, and flirting, we started dating by our senior year of High School. We both attended Thomas College in Maine and by the summer of 2005 I married my best friend. In 2006 I was offered an opportunity with work to move to Austin, TX and we both jumped on the opportunity. After years of dedicated hours on the road for work I had a major shift in priorities and we were ready to start a family. I had always wanted to be a Dad and when I heard the news that we would be expecting a baby boy in April of 2013, my heart was flooded with love for this little boy that I hadn’t even met yet.
At the time Nikki was a successful personal trainer in Austin, TX and I was a District Manager in retail. My job required me to travel about 25 nights a month; however, I made sure that I would be available for all of the doctor’s appointments and birthing classes…I was so excited to be a Dad; however, I think my Dad was even more excited to be a Grandfather! With the new addition to our family on the way we started to look at relocating to a different part of Austin. I swear we looked all over the place…our agent was amazing and very patient. It was on a Sunday when we spent a good 8 hours looking at homes with our agent and we were ready to give up on the whole idea until she recommended one other option. We pulled up to just a wooden frame of a future home…we never considered building but this home was going to be perfect for our new family. It was the most amazing experience to see it all come together…we visited it every weekend as it was being built, and as the house was moving along, so was the pregnancy. By early December we officially moved into our new home. It was a really special Christmas that year.
By April of 2013 we had it all planned out…our son, Fox Henry Gagnon, was due on the 15th and my Dad, stepmom and two sisters would come by about a week after the birth to visit. That’s only if things worked out as planned…My Dad and family arrived on schedule to visit; however, Fox did not…he held out until the 29th of April. I remember that my family actually had to extend their trip in order to be there for the birth…and I am so glad they did. We all arrived at the hospital and waited patiently for Fox to officially join our family; however, the birth didn’t go as planned. It was an intense experience that involved some emergency procedures but by the end of the day both mom and baby were alive. Some of my favorite memories from that day were holding my infant son against my chest with my shirt off and sitting next to my Dad as he held my little boy. It was a perfect moment…my Dad was my best friend and to see him holding my son filled my heart. A few days later my family packed up and headed back to Maine. While I enjoyed the time with my family, it was the pregnancy that was truly challenging. There were many unexpected challenges that quickly turned the experience from “this is the greatest day of my life”, to “I don’t know if they will make it”. While Nikki was in surgery, I waited in the hospital room until my beautiful baby boy was wheeled into the room…healthy and just gorgeous. Nikki was not with him…so immediately removed my shirt and held my baby boy against my skin…we had just met and I already loved him more than anything else on Earth. Nikki came through after a couple hours but was severely injured from the pregnancy and we spent over a week in the hospital. The injuries were so challenging that they kept her from working for well over a year. By the first week of June, Nikki received the call that her Grandmother passed away back in Maine. Since she was still healing, she was unable to travel with our son, so he would stay with me and luckily my mom was in town visiting as well. Nikki was going to be gone for about a week and fly back to Texas by June 6th; however, on the morning of June 6th, I received the call from my stepmom…my Dad had a massive heart attack and was gone. He was my best friend…he was only 61. I also lost my Grandfather at the age of 61. The two blessings through all of this was on June 5th I talked to my Dad over the phone, not knowing it would be the last time but it was a blessing to say “I love you” one more time. The second blessing was that my mom was visiting from Maine and was with me when I heard the news the next morning. Her love and support gave me the strength to get on a plane that night and fly back to Maine while she flew back with my infant son two days later.
After a few weeks we returned to Texas and I was back traveling for my job. We had only budgeted for Nikki to be out of work for a few months; however, she needed a lot more time to heal. We had an additional scare when our son needed emergency surgery on his stomach due a complication that can happen in boys. We began to take on a lot of debt, and before we knew it, our credit cards were all maxed out. On top of it all I was beginning to have a lot of health issues around my energy levels. One major breakthrough for our family was during the fall of 2013 when we found LifeAustin Church. As soon as I heard the music playing at our first service, I knew that we had found a church to call home. Nikki and I quickly fell in love with LifeAustin and became volunteers every Sunday – Nikki worked with the infants and I worked with the elementary kids. Our hearts were healing at LifeAustin; however, by February of 2014 I bent over to put my shoes on and upon standing up I felt the most excruciating pain in my lower back. I could barely walk without screaming…I ended up collapsing in my living room, shaking violently until the ambulance came. I had herniated my lower back but it was the muscle spasms that were the biggest concern…I had the most violent spasms the hospital staff had ever seen. They kept me in the hospital for a week followed by a year of physical therapy and a few epidural shots…we took on even more debt due to my injuries. Even with all the challenges, one thing was for sure…I knew that something had to change in order for me to be more present and healthy for my family. While still working full time in retail, I also began serving others as a Life Coach. I wanted to show my son that it’s never too late to follow your passion in life and that you can also write your own comeback story. I never felt more alive and filled with purpose that when I was helping others achieve their dreams.
We began to make some progress in getting back on track; however, by early 2015 I was feeling extreme fatigue, mood swings, dramatic changes in my weight and appetite, and severe muscle spasms throughout my body. My doctor’s couldn’t understand what the issue was except that my body was struggling to produce hormones. I was also struggling to stay awake every day…I felt terrible that I couldn’t be my best self and support my family. By April 10th of that spring I was informed by my neurologist that I had Sleep APNEA, Narcolepsy, Cataplexy, along with my already diagnosed issues with colonic muscle spasms, hormone depletion, and ADHD. I called my company on that day and decided that it was time to focus on my health and go on medical leave. During that time I began to focus on all things that would reduce stress and support my health. A major piece to that was continuing my involvement with the coaching community. I was able to spend more volunteer time at my church, build a stronger inner circle of friends, and being home more with my wife and son. I was living my life and honoring my values; however, my disability checks were barely enough to support us. While I was living a more fulfilling life by serving others, I was still struggling silently with my health. My mood swings were getting worse and I was feeling more intense bouts with depression, muscle spasms, and weight loss/gain. It was like having an invisible disease…I looked healthy on the outside but on the inside, I was experiencing an intense battle. In addition to all of this, I reinjured my back on July 4th; however, I was able to recover a lot quicker this time.
Things became even more complicated by late October of 2015 when my doctor finally diagnosed me with Addision’s Disease. Addison’s is a rare disease that in essence means my body is no longer producing the hormones needed to support me on a day to day basis…especially during stressful situations. In a normal person during a stressful situation, the body would produce cortisol; however, my body does not which means that when I experience stress, I am at a high risk of going into an Adrenal Crisis. Being in an Adrenal Crisis can be life threating if not treated quickly. There is not a cure for Addison’s; however, there is treatment. The side effects are also complicated and intense…it is not a one size fits all disease. I have found that the depression and mood swings are the most difficult to deal with. A few weeks after my diagnosis, my insurance company denied my long term disability claim (which is in the appeal process now). I have had days where I feel great and then there are days when I cry all day due to the unexpected bouts of depression. I have random muscle spasms that look like seizures, get easily confused during stressful situations, have had days where I stay in bed all day, and experience massive mood swings, combined with drastic swings in my blood pressure. I have gained a whole new insight into what it is like to live with an invisible disease…I look healthy and happy; however, under the surface I am working through a lot of challenges. One thing is for sure, I refuse to believe that I am going to give up and let this beat me…I am going to overcome this and I am going to use this experience to serve others someday. However, financially, I am no longer able to keep up with our bills. My credit score is non-existent as I negotiated with all our credit card companies a year prior to reduce our interest to almost 0% in exchange that we close the card and then we also fell behind on those agreements. We have taken on an extra roommate to help make ends meet but I my family is still struggling through this. Since the beginning of the New Year, I have made two trips to the hospital with Adrenal Crisis symptoms.
I am looking forward to beating this but also looking forward to getting back to doing the things I love most in life as a father, husband, and coach. I just need help and I need time to heal. I also believe the words we use make a difference and after this letter, you will not hear me say the words, sick, disabled, disease, illness, or disorder. This is a journey for me and my family and there are lots of lessons to learn along the way…the biggest lesson I am learning, and the one my friend Jean has helped me learn, is how to ask for help without fear of judgment and how to receive it. To anyone who is reading my story, know this: I am deeply humbled and grateful by your support…there are not enough words to express my gratitude, but with a full heart, I can say thank you. No matter what, I have dedicated my life to honoring my faith, family, values, and working to serve others. In the coaching world, we create life purpose statements. My life purpose statement is “I am the Courageous Heart that passionately beats to empower the hurt, broken, and lost”. Thank you for being a part of my journey.
Organizer and beneficiary
Jean Ali Muhlbauer
Organizer
Austin, TX
Matthew Gagnon
Beneficiary