- K
- S
Hi there everybody, first off, thank you very much for your most valuable time.
My name is Charlie Demere, I'm 36, I'm from San Diego, and I'm organizing this campaign with my close friend Jake Glaser. Our goal is to raise enough money to change the life of a good man and dear friend of ours in need, Chad Young.
We would also like to tell a story worth telling, may it help and inspire others, whether you share a similar tale, or not. Our cause is to transform one man's struggle into something beautiful, and in turn, something larger than any one person's story. For our ultimate goal is to convert negative experience and pain, into positive change and healing for many.
Over the last 10 years Chad's life has been completely turned upside down by a debilitating onslaught of medical issues (including an undiagnosed inflammatory disease and a botched spinal fusion surgery), and a medical/insurance system that's heavily bound in red tape. Best classified as an extreme test on the limits of one man's physical endurance and mental fortitude, combined. But like a heroic, battle-hardened warrior from an ancient Greek tale, Chad's held his ground and found a way to dig deep and fight on through the belly of the beast, in his 10 year Odyssey to find his way back "Home".
(Chad, above)Before all that though, a little bit about Chad and how we know him...
Chad is 50 years old and lives in Hayden, Idaho. Always creative and always looking for new ideas to get excited about, Chad's a dreamer by heart. From wanting to start his own frozen food line, to the dozens of quirky, yet genius invention ideas he's pitched to friends over the years. His bliss is being up in the mountains, or out on the lake fishing off of a rowboat. He'll cook up a storm, and make it rain. A former college baseball star that should have made it to the big leagues (a story for another time). A gem of a man with a heart of gold, who never stops believing in himself or others.
-Chad, with his grandson Carson.
Chad's dog, Sophie
Chad's dog, Sadie.A few random pics of Chad's house I took during a recent visit.
I met Chad while living up in North Idaho in 2003 when I was just 19. I was young, clueless, broke, and living with my best friend Jake. We were fresh out of high school and living on our own for the very first time. We were loud, party-oriented, and had no real occupational skills, yikes! A special time, to say the least.
- Jake (left) and Charlie (2021).And Chad just happened to be our neighbor. And although we were obnoxious, he had mercy on us and would end up being the best neighbor we could have. Chad put us both to work and gave us both good-paying jobs working for his successful custom landscaping company.
-Beautiful North Idaho, where Jake and I first met Chad, and where Chad grew up.He generously shared with us the hearty home-cooked meals he and his girlfriend made nightly. He kept it real by giving us much-needed advice in a time otherwise filled with "Pure Dumbassery". He took us out into the woods (and even brought us back) to fish on the lake, spot wildlife in the mountains, and explore nature in true North Idaho fashion, a special place to experience for a couple of knuckleheads from California.
- Chad (right) & Charlie in 2020It would just so happen though, that over the years we would only become closer, and remain lifelong friends.
Let's get into it..
Chad's been living with an inflammatory disease known as Behcet's Disease for the last ten years, (diagnosed in October of 2020).
The Behcet's went on undiagnosed for a decade, all the while wreaking havoc on Chad's body. Although Chad continually insisted and pleaded for more attention and care, his case would be severely mishandled by his medical network, and his pleas for help would often fall upon deaf ears.
- Behcet's Disease BreakdownOn top of that, Chad fell victim to a botched spinal fusion surgery he received in 2010, which has yet to be fixed to this day. Since then, Chad has lived with 4 severely herniated discs in his neck. The pain and discomfort is unbearable.
Over the last decade, Chad would also face a gauntlet of other medical issues, including..
- 3 total knee replacement surgeries.
- 4 hernias at once (Double Groin, Hiatal, Umbilical).
- Partially severed labrum during his double groin hernia surgery, yet another operation gone wrong. Resulting in yet another unsuccessful repair surgery for the severed labrum which would eventually tear again, finally remedied by a hip surgery down the line.
- Colocutaneous fistula ulcer surgery as a result of the Behcet's and the severe intestinal inflammation that accompanies it.
- Total hip replacement surgery.
- Esophagus repair surgery, due to massive GI issues (Behcet's).
- Arthritis (lower back)
- Neuropathy (hands and feet)
- 10 years of continual physical therapy
Most of these injuries were either directly related to the botched neck surgery or the undiagnosed Behcet's in one form or another.
Chad's body was losing structural integrity from the neck down while the Behcet's ran rampant with a nasty slew of symptoms and complications (arthritis, neuropathy, serious GI issues, chronic fatigue, migraines, aggressive in-grown hairs, and random skin sores).
Most of these injuries were either directly related to the botched neck surgery or the undiagnosed Behcet's in one form or another.
Chad's body was losing structural integrity from the neck down while the Behcet's ran rampant with a nasty slew of symptoms and complications (arthritis, neuropathy, serious GI issues, chronic fatigue, migraines, aggressive in-grown hairs, and random skin sores).
In hindsight, we now know that emotional stress and physical trauma are the biggest triggers that set off the Behcet's Disease's inflammatory flare ups. We had no idea at the time that the severe inflammatory symptoms were all related to each other and emanating from the same disease. Chad fought very hard to finally receive this diagnosis (more below). It was an unnecessary uphill battle that lasted 10 years
Eventually, Chad lost his business and had to go on full disability to survive, which put him at the total mercy of Medicaid, Medicare, and SSDI. With very limited resources though, Chad has fought his way from the bottom to the top of the medical/insurance system to make his voice heard and receive the care he needs in his fight for survival and answers.
(Chad walking with his dog Sophie, a loyal companion and friend who's never left his side.)As a side note, I would like to mention that at the beginning of 2016, Chad moved his Mom in to his home so he could care for her. Although he was in deep pain himself, there were no other options at the time. Her husband had passed away and her home was seized to pay off her husband's medical debt. She needed assistance and could no longer live on her own, but wasn't ready to go live at an Assisted Living Facility.
- Chad with his Mom in 2020So Chad cared for his mother over the next 2+ years. A loyal son and true warrior. Even with his back against the wall, he was there to protect and take care of his mother, no matter what. That's just Chad. She is now happily transitioned and in a great senior home not far from him.
Below, is Chad's medical history timeline, dating back to 2009.
2009- The very first symptoms of Behcet's popped up out of nowhere, in the form of abnormally aggressive in-grown hairs under the dermis layer of skin on Chad's face. These were incredibly invasive and upsetting to say the least, they would side-wind and burrow, and would have to be surgically removed on an ongoing basis. At the time, Chad was deeply concerned, but everything else in his life was still on course. He was 39 years young, running a successful business, paying off his first house, and enjoying life to the fullest.
(Facial scarring from aggressive ingrown hairs, Chads skin used to be as smooth as can be.)
2010- While playing Softball with friends, Chad took a ball to the neck and broke 4 vertebrae. A turning point injury in Chad's life, he had no idea at the time though.
- Herniated vertebrae from Chad's botched spinal fusion surgery.
The repair surgery to fix the broken vertebrae was botched, the titanium plate that was used to fuse the vertebrae together was fused incorrectly and severely herniated the already injured and displaced vertebrae (4,5,6,7).
The surgeon who botched the surgery offered to repair with cadaver bones. Chad declined the offer though, having already lost faith in the surgeon, and instead, he asked for a 2nd opinion.
Once Chad asked for a second opinion the surgeon dropped Chad's case. Since then, there hasn't been a doctor willing to pick up Chad's case to try and repair the damage done by this life-altering surgery gone wrong.
2 years ago, top-ranking doctors at highly respected Harbor View in Seattle looked at Chad's case and were shocked, they told him it was a "barbaric operation". They refuse to even attempt a correction surgery to try and "pick up the pieces" due to liability alone.
*Chad has lived with the 4 severely herniated vertebrae for over ten years now.
2011- Double knee replacement surgery. While still dealing with the neck surgery debacle and somehow trying to run his business, Chad's knees went out. This surgery was expected at some point in his life, but the rapid breakdown was accelerated by the inflammatory disease (Behcet's) which was flaring up like crazy. And without proper upper body support (neck) he was losing structural integrity as well. A vicious cycle that was just beginning, the undetected autoimmune disease fueled the fire that was already lit.
-Chad in his happy place, the woods. This pic was taken right before things took a dramatic turn in Chad's life.
2011/2012- Due to debilitating pain and limited mobility, Chad was no longer able to run his landscaping business, and much to his displeasure had to accept assistance from the government to survive. This was supposed to be temporary, the plan was to get his neck fixed, get his knees fixed, and be back in the game, ready to rock asap. This never happened.
2012- Chad's body's lack of knee and neck support took its toll on his already hurting back. Scans revealed his L1 and L2 vertebrae were bulging, with an additional stress fracture between his L4/L5 vertebrae. Chad's lower back was becoming arthritic and his hands and feet were getting hit with neuropathy from the nerve damage between his L4/L5 vertebrae. This was incredibly upsetting, Chad had become deeply concerned for his future and knew the road ahead was steep.
- Bulging Disc causing neuropathy from nerve damage.
2013/2014- The undetected Behcet's was flaring up like crazy. Chad was experiencing a wide array of symptoms, but he still had no idea the issues were related to one another. Symptoms ranged from a multitude of serious gastrointestinal issues, random sores that took months to heal, migraines, fatigue, and those damned in-grown hairs constantly attacking Chad's face. His handsome face forever scarred.
By this point, Chad was on full SSI/Medicaid/Medicare and only 44 years old. A major blow to a (previously) healthy, motivated, fit, and completely self-made working man.
2015- Fistula surgery. Chad had an ulcer so inflamed that it extended through the entire wall of his lower intestine. This was the Behcet's flaring up, still undetected and taking it's toll on Chad. Chad continued to remain in the dark, doing his best to stay positive, but truthfully he was in a deep depression at this point.
2016- Chad would need another knee replacement for his left knee, just 5 years after it had already been replaced. His knee had become "unglued" by the inflammatory Behcet's coupled with the physical tasks that basic day-to-day life required.
Post-surgery physical therapy for the knee was canceled. Chad had a whopping 4 hernias (2 Groin, 1 Umbilical, 1 Hiatal). This effectively disabled his mobility, so knee therapy was halted and never finished.
Later that year Chad would get surgery for his double groin hernia. During surgery, somehow something went wrong, and Chad came out of the operation with a partially severed labrum. This was only determined after lots of pain and ultimately an MRI DEMAND from Chad.
In 2017 he received repair surgery for his severed labrum, but by the end of the year, it would tear. Chad's immune system was just too inflamed, his body was attacking itself instead of healing itself, still a mystery at the time as to why (Behcet's).
The labrum issue wouldn't be resolved for another 2 years, via a total hip replacement surgery in December 2020.
2018: Chad continued to push forward and advocate for himself more than ever, but it was getting harder and harder to stay positive. His neck and back were on fire, at that point he'd been living with the repercussions from his botched spinal fusion surgery for 8 years. His body was in a continual state of trauma, looping back into and triggering the inflammatory disease. His undiagnosed Behcet's was full-fledged and flaring up like never before.
(Chad, feeling down n' out, but getting some love from his trusty sidekick, Sophie)
What was causing all of this random inflammation? It was still a complete mystery to Chad. It was maddening. He begged the question to doctors, but most seemed to be burnt out, unconcerned, low on time, and all too integrated into the dead-end system that so many in need have already been consumed by.
The Behcet's was going nuclear, and nobody seemed to care. Chad's stomach had been flaring up so bad that his teeth were destroyed by heartburn. He had migraines, eye aches, chronic fatigue, giant muscle knots that would appear out of nowhere and lock him up. Between his neck, his back, his hips, his knee's, and the aggressive inflammation, he was literally hurting from head to toe.
(Getting Chad's neck muscles relaxed at physical therapy, he's been in physical therapy for the better part of ten years.)
Callused doctors and nurses didn't believe the ingrown hairs were as aggressive as Chad insisted they were. He was literally begging for help, for these dreaded hairs drove Chad mad more than anything, you could imagine. They refused to listen to Chad and told him he was a "hypochondriac" instead. There were treatments available to treat the skin issue, but Chad was never "approved".
(Random sores on Chads hand from the undiagnosed Behcet's)
Instead, they would notate on Chad's file that he was "delusional" because he insisted there was something deeper going on, and a "drug abuser" because of the way he now looked with his marked face and skin. Not only an insult but completely absurd and borderline malpractice. This note damaged and hindered Chad's credibility in a time when he needed to be heard most. He believed he was being punished for rocking the boat and for his absolute insistence while actively speaking up and refusing to "go with the program".
Fully disabled, seemingly out of options, and completely along for the ride around the loony medical industry carousel, as it went round and round. Chad was at their mercy. Instead of answers, he was given instructions to take pain pills, antidepressants, anti-anxiety meds, and to more or less.. sit down and shut up.
(Chad, still standing, 2020)
But Chad would not give up, give in, or shut up. Instead, he educated himself on what his options were and how to leverage them best, exercised his rights, demanded 3rd and 4th opinions, new tests, and new treatment options. He would drop doctors that didn't treat him or his case with respect. He mastered the lingo, even better than most of the people handling his case.
He learned how to advocate for himself at the highest level, and how to challenge doctors and their opinions, and in turn learned a lot about his body, and how to navigate through this maddening and comically circuitous medical/insurance system. For Chad's body seemed to be breaking down, but his mind had never been sharper.
To those who feel hopeless and in dire need of help. Fear not. Push on. Live in Hope. Never give up.
2019: After years, Chad's constant persistence paid off. His case got serious traction with help from a good-hearted and exceptional physician assistant who believed in Chad's absolute insistence there was something wrong with him. She decided to take a more in-depth look at his blood work and order different tests. It was then that she noticed an oddity in Chad's blood work that made no sense at all: Chad was anemic (lack of blood), yet he had a high red blood cell count, which was very strange.
*In these next few paragraphs we wanted to break down exactly what it took for progress to be made. We want other people in a similar predicament to recognize this and learn to advocate for themselves as best as possible, we know it can be very challenging and not always enough, none the less.. never give up. We also want to highlight, praise, and acknowledge the many doctors and nurses out there who are making a huge difference in the world, thank you..
So, Chad's primary physician didn't know what to make of this new blood test oddity, and Chad was sent to an oncologist (cancer doctor).
The oncologist was also exceptional. He ran new tests, and also listened to Chad articulate the issues he'd experienced over the last ten years. And after it was all said and done, the oncologist was certain it wasn't a form of cancer Chad had, but instead the rare inflammatory disease known as Behcet's. This was groundbreaking.
It was only a theory though, Chad needed a more comprehensive case study in order to receive an official diagnosis, and in turn, qualify for the necessary treatments to counter the Behcet's. The oncologist did Chad a major solid and sent his case to the Mayo Clinic in Minnesota. A fresh set of eyes outside of Chad's local Idaho network was much needed, and the oncologist knew this.
The Mayo Clinic didn't specialize in Behcet's, so they referred Chad to a world-renowned rheumatologist at NYU medical center that does. Chad was finally working his way out of the Idaho medical maze.
-A cool pic that Chad took, called "Shoot for the Moon"
The rheumatologist at NYU accepted Chad's case and asked him to come out to NYC for 3 days of tests.
2020: Chad raised the funds necessary to travel from North Idaho to NYC for the 3-day stay. Plane tickets and lodging were covered by Chad's friends. Medicaid didn't permit the trip, it was deemed an unnecessary expense. Yet it was a very necessary visit.
Fortunately, Medicare covered the hospital fees. Chad pieced it all together, he was good to go.
So he flew from North Idaho to NYC in October 2020 in his quest to seek answers.
-Chad in NYC
And answers Chad would find.
The rheumatologist at NYU confirmed Chad's Behcet's Disease.
Finally, Chad could put a name to face of the thing that's been aggressively haunting him for a decade.
Although Behcet's is chronic and Chad's is a severe form, now he has a direction to head in. Really, his journey is just beginning, but now we have a framework to help put everything into context with. There are medications he can take to help counteract the disease. But the most effective medications have very serious side effects. Chad is navigating all possible treatment options, including alternative medicine. If you're reading this and think you may be able to help, please reach out to us.
Additionally, we've learned that Behcet's flares up in cycles, which are easily triggered by stress and physical trauma. Foundational and imperative information for Chad to have.
The Behcet's confirmation is also VALIDATION for Chad and all the years of absolute insistence (to his medical network) that he simply needed more help.
There was more progress made on his case in just a few weeks than had been made in almost ten years. All it took was for a few key people to really stop, listen, and care. It's hard to find traction when you are completely dependant on the system, and your case has been pigeonholed and cast aside.
Chad is not alone..
(Connected)
To the countless people out there in a similar bind, maybe you are one of them.. We don't know you, but we Love you..
This is Chad's message to you:
Never give up. Especially when your back is against the wall. Educate yourself, ask questions, seek answers, become your own advocate, listen to your instinct, and don't compromise if something doesn't sit right, especially when the stakes are high. And a little prayer, goes a long way.
To the millions of nameless faces, and faceless names in pain, who are discouraged, on a minimal fixed income (or not), and dependent on a complicated and confusing, multilayered, red tape lined medical industry. Keep pushing on, and always remain hopeful.
Chad with Sophie
The Plan.
To hook Chad up and help him get back on his feet, put some wind under his wings, and watch him fly like never before.
SO, this is exactly the point where we make the shift in Chad's GoFundMe (and life) from negative experience, and transform it into positive connectivity and healing with others in need as well.
So we are going to build/create a space outdoors that he can use as a base of operations to reach out to others in need with the help of Mother Nature, and the nourishment of food from the Heart as his inspiration.
Having a giving spirit and wanting to make a difference in people's lives is already part of who Chad is at his core. In the past, I've seen him hook people up with free landscaping for local Extreme Home Makeovers. I've seen him make delicious dinners for his work crew after a long day's work, I benefited from those dinners personally, as did my belt salesman. And Chad even co-produced and hosted a regional Sunday special TV show called "Outdoor Storytellers" for local ABC affiliate KXLY, Spokane. On the show, Chad would take people (for example, a father and son) out into nature and create a special experience for them to share together, bonded through nature.
-One of Chad's nature pics
Chad already has access to the perfect spot that can act as a base, a beautiful piece of land with a dock, where the woods meet the water in gorgeous Hayden Lake Idaho, where Chad grew up. He knows Hayden Lake and her surrounding tree-filled mountains in ways that Google maps could never match.
An outdoor cooking setup will be equipped at the location as well. Chad absolutely loves cooking for people and making their tummies smile. The man knows how to cook. Before his life took this unexpected turn he was going to open up a specialty taco stand called Mountain Man Tacos. And so in one form or another, cook for the people he will.
(Chad's backyard fire pit used for grilling)
The ULTIMATE goal though.. is to gradually create a community support network purposed for cultivating happiness, hope, and healing in a stress-free environment for people of all ages and need levels. The families of these loved ones are greatly welcomed as well.
A few fun experiences just waiting to be had that we have in mind already:
- Fishing lessons for kids, and adults.
- Exploratory nature walks for all ages. Some of these will be geared for environmental preservation and local wildlife education as well.
-Boat rides in the lake.
-Fun, inclusive, and engaging games for all ages. Everything from Horse Shoes and Catch, to Duck Duck Goose, Checkers, and Chess, played under the shade of trees, right next to the lake.
-Camp Fires. For fun, storytelling, s'mores (of course), etc.
Sometimes though, the campfire will be used as a centerpiece to host pressure-free, organically therapeutic group conversations and sharing. AKA.. just sittin around and talkin.
May the ancient familiarity and safety of a Campfire help bring us all together, it's been a while..
All any of us have.. is Right Now.
Chad still faces serious/continued challenges ahead, that said, his plan is to move forward and open a new chapter in life, regardless of his circumstances.
So we ask you for your help. In any way. Whether it be a donation of any amount, sharing this link with someone else, or putting us in touch with a doctor who's willing to take a look at Chad's neck, or any other part of his medical file.
Donations will help pay for a wish list of purchases and expenses Chad needs help with:
-New energy efficient furnace
2009- The very first symptoms of Behcet's popped up out of nowhere, in the form of abnormally aggressive in-grown hairs under the dermis layer of skin on Chad's face. These were incredibly invasive and upsetting to say the least, they would side-wind and burrow, and would have to be surgically removed on an ongoing basis. At the time, Chad was deeply concerned, but everything else in his life was still on course. He was 39 years young, running a successful business, paying off his first house, and enjoying life to the fullest.
(Facial scarring from aggressive ingrown hairs, Chads skin used to be as smooth as can be.)2010- While playing Softball with friends, Chad took a ball to the neck and broke 4 vertebrae. A turning point injury in Chad's life, he had no idea at the time though.
- Herniated vertebrae from Chad's botched spinal fusion surgery. The repair surgery to fix the broken vertebrae was botched, the titanium plate that was used to fuse the vertebrae together was fused incorrectly and severely herniated the already injured and displaced vertebrae (4,5,6,7).
The surgeon who botched the surgery offered to repair with cadaver bones. Chad declined the offer though, having already lost faith in the surgeon, and instead, he asked for a 2nd opinion.
Once Chad asked for a second opinion the surgeon dropped Chad's case. Since then, there hasn't been a doctor willing to pick up Chad's case to try and repair the damage done by this life-altering surgery gone wrong.
2 years ago, top-ranking doctors at highly respected Harbor View in Seattle looked at Chad's case and were shocked, they told him it was a "barbaric operation". They refuse to even attempt a correction surgery to try and "pick up the pieces" due to liability alone.
*Chad has lived with the 4 severely herniated vertebrae for over ten years now.
2011- Double knee replacement surgery. While still dealing with the neck surgery debacle and somehow trying to run his business, Chad's knees went out. This surgery was expected at some point in his life, but the rapid breakdown was accelerated by the inflammatory disease (Behcet's) which was flaring up like crazy. And without proper upper body support (neck) he was losing structural integrity as well. A vicious cycle that was just beginning, the undetected autoimmune disease fueled the fire that was already lit.
-Chad in his happy place, the woods. This pic was taken right before things took a dramatic turn in Chad's life. 2011/2012- Due to debilitating pain and limited mobility, Chad was no longer able to run his landscaping business, and much to his displeasure had to accept assistance from the government to survive. This was supposed to be temporary, the plan was to get his neck fixed, get his knees fixed, and be back in the game, ready to rock asap. This never happened.
2012- Chad's body's lack of knee and neck support took its toll on his already hurting back. Scans revealed his L1 and L2 vertebrae were bulging, with an additional stress fracture between his L4/L5 vertebrae. Chad's lower back was becoming arthritic and his hands and feet were getting hit with neuropathy from the nerve damage between his L4/L5 vertebrae. This was incredibly upsetting, Chad had become deeply concerned for his future and knew the road ahead was steep.
- Bulging Disc causing neuropathy from nerve damage.2013/2014- The undetected Behcet's was flaring up like crazy. Chad was experiencing a wide array of symptoms, but he still had no idea the issues were related to one another. Symptoms ranged from a multitude of serious gastrointestinal issues, random sores that took months to heal, migraines, fatigue, and those damned in-grown hairs constantly attacking Chad's face. His handsome face forever scarred.
By this point, Chad was on full SSI/Medicaid/Medicare and only 44 years old. A major blow to a (previously) healthy, motivated, fit, and completely self-made working man.
2015- Fistula surgery. Chad had an ulcer so inflamed that it extended through the entire wall of his lower intestine. This was the Behcet's flaring up, still undetected and taking it's toll on Chad. Chad continued to remain in the dark, doing his best to stay positive, but truthfully he was in a deep depression at this point.
2016- Chad would need another knee replacement for his left knee, just 5 years after it had already been replaced. His knee had become "unglued" by the inflammatory Behcet's coupled with the physical tasks that basic day-to-day life required.
Post-surgery physical therapy for the knee was canceled. Chad had a whopping 4 hernias (2 Groin, 1 Umbilical, 1 Hiatal). This effectively disabled his mobility, so knee therapy was halted and never finished.
Later that year Chad would get surgery for his double groin hernia. During surgery, somehow something went wrong, and Chad came out of the operation with a partially severed labrum. This was only determined after lots of pain and ultimately an MRI DEMAND from Chad.
In 2017 he received repair surgery for his severed labrum, but by the end of the year, it would tear. Chad's immune system was just too inflamed, his body was attacking itself instead of healing itself, still a mystery at the time as to why (Behcet's).
The labrum issue wouldn't be resolved for another 2 years, via a total hip replacement surgery in December 2020.
2018: Chad continued to push forward and advocate for himself more than ever, but it was getting harder and harder to stay positive. His neck and back were on fire, at that point he'd been living with the repercussions from his botched spinal fusion surgery for 8 years. His body was in a continual state of trauma, looping back into and triggering the inflammatory disease. His undiagnosed Behcet's was full-fledged and flaring up like never before.
(Chad, feeling down n' out, but getting some love from his trusty sidekick, Sophie)What was causing all of this random inflammation? It was still a complete mystery to Chad. It was maddening. He begged the question to doctors, but most seemed to be burnt out, unconcerned, low on time, and all too integrated into the dead-end system that so many in need have already been consumed by.
The Behcet's was going nuclear, and nobody seemed to care. Chad's stomach had been flaring up so bad that his teeth were destroyed by heartburn. He had migraines, eye aches, chronic fatigue, giant muscle knots that would appear out of nowhere and lock him up. Between his neck, his back, his hips, his knee's, and the aggressive inflammation, he was literally hurting from head to toe.
(Getting Chad's neck muscles relaxed at physical therapy, he's been in physical therapy for the better part of ten years.)
Callused doctors and nurses didn't believe the ingrown hairs were as aggressive as Chad insisted they were. He was literally begging for help, for these dreaded hairs drove Chad mad more than anything, you could imagine. They refused to listen to Chad and told him he was a "hypochondriac" instead. There were treatments available to treat the skin issue, but Chad was never "approved".
(Random sores on Chads hand from the undiagnosed Behcet's)
Instead, they would notate on Chad's file that he was "delusional" because he insisted there was something deeper going on, and a "drug abuser" because of the way he now looked with his marked face and skin. Not only an insult but completely absurd and borderline malpractice. This note damaged and hindered Chad's credibility in a time when he needed to be heard most. He believed he was being punished for rocking the boat and for his absolute insistence while actively speaking up and refusing to "go with the program".
Fully disabled, seemingly out of options, and completely along for the ride around the loony medical industry carousel, as it went round and round. Chad was at their mercy. Instead of answers, he was given instructions to take pain pills, antidepressants, anti-anxiety meds, and to more or less.. sit down and shut up.
(Chad, still standing, 2020)But Chad would not give up, give in, or shut up. Instead, he educated himself on what his options were and how to leverage them best, exercised his rights, demanded 3rd and 4th opinions, new tests, and new treatment options. He would drop doctors that didn't treat him or his case with respect. He mastered the lingo, even better than most of the people handling his case.
He learned how to advocate for himself at the highest level, and how to challenge doctors and their opinions, and in turn learned a lot about his body, and how to navigate through this maddening and comically circuitous medical/insurance system. For Chad's body seemed to be breaking down, but his mind had never been sharper.
To those who feel hopeless and in dire need of help. Fear not. Push on. Live in Hope. Never give up.
2019: After years, Chad's constant persistence paid off. His case got serious traction with help from a good-hearted and exceptional physician assistant who believed in Chad's absolute insistence there was something wrong with him. She decided to take a more in-depth look at his blood work and order different tests. It was then that she noticed an oddity in Chad's blood work that made no sense at all: Chad was anemic (lack of blood), yet he had a high red blood cell count, which was very strange.
*In these next few paragraphs we wanted to break down exactly what it took for progress to be made. We want other people in a similar predicament to recognize this and learn to advocate for themselves as best as possible, we know it can be very challenging and not always enough, none the less.. never give up. We also want to highlight, praise, and acknowledge the many doctors and nurses out there who are making a huge difference in the world, thank you..
So, Chad's primary physician didn't know what to make of this new blood test oddity, and Chad was sent to an oncologist (cancer doctor).
The oncologist was also exceptional. He ran new tests, and also listened to Chad articulate the issues he'd experienced over the last ten years. And after it was all said and done, the oncologist was certain it wasn't a form of cancer Chad had, but instead the rare inflammatory disease known as Behcet's. This was groundbreaking.
It was only a theory though, Chad needed a more comprehensive case study in order to receive an official diagnosis, and in turn, qualify for the necessary treatments to counter the Behcet's. The oncologist did Chad a major solid and sent his case to the Mayo Clinic in Minnesota. A fresh set of eyes outside of Chad's local Idaho network was much needed, and the oncologist knew this.
The Mayo Clinic didn't specialize in Behcet's, so they referred Chad to a world-renowned rheumatologist at NYU medical center that does. Chad was finally working his way out of the Idaho medical maze.
-A cool pic that Chad took, called "Shoot for the Moon"The rheumatologist at NYU accepted Chad's case and asked him to come out to NYC for 3 days of tests.
2020: Chad raised the funds necessary to travel from North Idaho to NYC for the 3-day stay. Plane tickets and lodging were covered by Chad's friends. Medicaid didn't permit the trip, it was deemed an unnecessary expense. Yet it was a very necessary visit.
Fortunately, Medicare covered the hospital fees. Chad pieced it all together, he was good to go.
So he flew from North Idaho to NYC in October 2020 in his quest to seek answers.
-Chad in NYC And answers Chad would find.
The rheumatologist at NYU confirmed Chad's Behcet's Disease.
Finally, Chad could put a name to face of the thing that's been aggressively haunting him for a decade.
Although Behcet's is chronic and Chad's is a severe form, now he has a direction to head in. Really, his journey is just beginning, but now we have a framework to help put everything into context with. There are medications he can take to help counteract the disease. But the most effective medications have very serious side effects. Chad is navigating all possible treatment options, including alternative medicine. If you're reading this and think you may be able to help, please reach out to us.
Additionally, we've learned that Behcet's flares up in cycles, which are easily triggered by stress and physical trauma. Foundational and imperative information for Chad to have.
The Behcet's confirmation is also VALIDATION for Chad and all the years of absolute insistence (to his medical network) that he simply needed more help.
There was more progress made on his case in just a few weeks than had been made in almost ten years. All it took was for a few key people to really stop, listen, and care. It's hard to find traction when you are completely dependant on the system, and your case has been pigeonholed and cast aside.
Chad is not alone..
(Connected)To the countless people out there in a similar bind, maybe you are one of them.. We don't know you, but we Love you..
This is Chad's message to you:
Never give up. Especially when your back is against the wall. Educate yourself, ask questions, seek answers, become your own advocate, listen to your instinct, and don't compromise if something doesn't sit right, especially when the stakes are high. And a little prayer, goes a long way.
To the millions of nameless faces, and faceless names in pain, who are discouraged, on a minimal fixed income (or not), and dependent on a complicated and confusing, multilayered, red tape lined medical industry. Keep pushing on, and always remain hopeful.
Chad with SophieThe Plan.
To hook Chad up and help him get back on his feet, put some wind under his wings, and watch him fly like never before.
SO, this is exactly the point where we make the shift in Chad's GoFundMe (and life) from negative experience, and transform it into positive connectivity and healing with others in need as well.
Filling people's hearts (and belly's), through the mediums of Nature and cooking are the 2 things Chad loves to do most.
So we are going to build/create a space outdoors that he can use as a base of operations to reach out to others in need with the help of Mother Nature, and the nourishment of food from the Heart as his inspiration.
Having a giving spirit and wanting to make a difference in people's lives is already part of who Chad is at his core. In the past, I've seen him hook people up with free landscaping for local Extreme Home Makeovers. I've seen him make delicious dinners for his work crew after a long day's work, I benefited from those dinners personally, as did my belt salesman. And Chad even co-produced and hosted a regional Sunday special TV show called "Outdoor Storytellers" for local ABC affiliate KXLY, Spokane. On the show, Chad would take people (for example, a father and son) out into nature and create a special experience for them to share together, bonded through nature.
-One of Chad's nature picsChad already has access to the perfect spot that can act as a base, a beautiful piece of land with a dock, where the woods meet the water in gorgeous Hayden Lake Idaho, where Chad grew up. He knows Hayden Lake and her surrounding tree-filled mountains in ways that Google maps could never match.
An outdoor cooking setup will be equipped at the location as well. Chad absolutely loves cooking for people and making their tummies smile. The man knows how to cook. Before his life took this unexpected turn he was going to open up a specialty taco stand called Mountain Man Tacos. And so in one form or another, cook for the people he will.
(Chad's backyard fire pit used for grilling)
The ULTIMATE goal though.. is to gradually create a community support network purposed for cultivating happiness, hope, and healing in a stress-free environment for people of all ages and need levels. The families of these loved ones are greatly welcomed as well.
A few fun experiences just waiting to be had that we have in mind already:
- Fishing lessons for kids, and adults.
- Exploratory nature walks for all ages. Some of these will be geared for environmental preservation and local wildlife education as well.
-Boat rides in the lake.
-Fun, inclusive, and engaging games for all ages. Everything from Horse Shoes and Catch, to Duck Duck Goose, Checkers, and Chess, played under the shade of trees, right next to the lake.
-Camp Fires. For fun, storytelling, s'mores (of course), etc.
Sometimes though, the campfire will be used as a centerpiece to host pressure-free, organically therapeutic group conversations and sharing. AKA.. just sittin around and talkin.
May the ancient familiarity and safety of a Campfire help bring us all together, it's been a while..
All any of us have.. is Right Now.
Chad still faces serious/continued challenges ahead, that said, his plan is to move forward and open a new chapter in life, regardless of his circumstances.
So we ask you for your help. In any way. Whether it be a donation of any amount, sharing this link with someone else, or putting us in touch with a doctor who's willing to take a look at Chad's neck, or any other part of his medical file.
Donations will help pay for a wish list of purchases and expenses Chad needs help with:
-New energy efficient furnace
-New windows for insulation
-Pre owned fuel efficient vehicle
-New set of chompers.. AKA teeth
-New set of chompers.. AKA teeth
-Orthopedic shoes
-Massages/body work
-Zero gravity massage chair
-Compression massage gun
-Microdermabrasion for facial scarring
-Monthly internet
-Computer and printer
-Digital camera for wilderness photos
-Digital camera for wilderness photos
-New clothes, nothin fancy.
-New juicer
-New juicer
10% of all donations will go directly into a general fund account reserved for helping others via the outdoor shared experience support network we're setting up.
This general fund account will be fully transparent and all financial information will be public.
Once our initial goal of $100,000 is met, the ratio will flip, and the general fund percentage will bump to 90% as we advance onwards to help others and pay it forward perpetually.
With Deep Gratitude, we thank you for your consideration and the valuable time you've taken to read this.
May We All Find Peace, And May We All Live In Hope Together
This general fund account will be fully transparent and all financial information will be public.
Once our initial goal of $100,000 is met, the ratio will flip, and the general fund percentage will bump to 90% as we advance onwards to help others and pay it forward perpetually.
With Deep Gratitude, we thank you for your consideration and the valuable time you've taken to read this.
May We All Find Peace, And May We All Live In Hope Together
Organizer and beneficiary
Charles Demere
Beneficiary