- R
As many people close to me know, starting this fundraiser has been a last resort. It isn’t something I ever wanted to do. I’ve spent years trying to manage my health and the costs that come with it quietly and independently, but my condition has continued to worsen, and the financial burden has grown beyond what my family and I can manage on our own.
I’ve been living with severe Long COVID, ME/CFS, and multiple serious spinal and vascular comorbidities for over four years. When I first became ill, my symptoms were considered mild. After graduating from CSU in 2020, I was still able to work remotely and maintain some sense of normal life. I loved being in nature, spending time with friends and family, and was just beginning to build my career. Since then, however, I’ve steadily declined due to underlying structural conditions that have progressively worsened, including CCI, Tethered Cord, May-Thurner Syndrome, and suspected Chiari caused by intracranial hypertension.
Day to day, my limitations are significant. I can’t tolerate much light, and louder environments require noise-canceling headphones. I can only use my phone in short intervals and can’t watch TV shows or movies. I can no longer sit up for very long without triggering extreme, uncontrollable adrenaline surges. Even moving from lying down to sitting feels like the most physically strenuous activity my body can handle.
My condition is now severe enough that I require a PICC line for daily IV fluids just to stay out of the hospital. Without it, I can’t sit up at all or tolerate even basic daily activity. This support is essential to keeping me stable while I pursue further treatment.
While some people improve with time, which is amazing, my experience has been the opposite. The decline has been exhausting and has affected not just me, but my entire family. I eventually had to move back in with my parents, who are now retired and living on fixed incomes. Years of medical expenses have drained both my savings and theirs, and we’ve reached a point where very few options remain.
Despite everything, there is still reason for hope. Many of my diagnoses are structural, meaning they may be treatable with the right specialists and surgical care. The challenge is access. Most surgeons who treat these conditions — including the one my doctors believe I need to see — only accept out-of-network benefits. My coverage pays only a small percentage, and with the likelihood of multiple procedures, the costs quickly become overwhelming.
Funds raised here would go toward:
-Out-of-network doctor appointments
-Necessary testing and surgeries aimed at restoring function and quality of life
-Travel costs, since these specialists are not in my state
If you’re unable to donate, even sharing this means more than I can express. This truly feels like my last chance to hold onto something hopeful. I worry about what further deterioration could mean, but I still believe there is a path forward with the right care and support.
Thank you for taking the time to read this, for caring, and for being here.
With love and gratitude,
Josh
I’ve been living with severe Long COVID, ME/CFS, and multiple serious spinal and vascular comorbidities for over four years. When I first became ill, my symptoms were considered mild. After graduating from CSU in 2020, I was still able to work remotely and maintain some sense of normal life. I loved being in nature, spending time with friends and family, and was just beginning to build my career. Since then, however, I’ve steadily declined due to underlying structural conditions that have progressively worsened, including CCI, Tethered Cord, May-Thurner Syndrome, and suspected Chiari caused by intracranial hypertension.
Day to day, my limitations are significant. I can’t tolerate much light, and louder environments require noise-canceling headphones. I can only use my phone in short intervals and can’t watch TV shows or movies. I can no longer sit up for very long without triggering extreme, uncontrollable adrenaline surges. Even moving from lying down to sitting feels like the most physically strenuous activity my body can handle.
My condition is now severe enough that I require a PICC line for daily IV fluids just to stay out of the hospital. Without it, I can’t sit up at all or tolerate even basic daily activity. This support is essential to keeping me stable while I pursue further treatment.
While some people improve with time, which is amazing, my experience has been the opposite. The decline has been exhausting and has affected not just me, but my entire family. I eventually had to move back in with my parents, who are now retired and living on fixed incomes. Years of medical expenses have drained both my savings and theirs, and we’ve reached a point where very few options remain.
Despite everything, there is still reason for hope. Many of my diagnoses are structural, meaning they may be treatable with the right specialists and surgical care. The challenge is access. Most surgeons who treat these conditions — including the one my doctors believe I need to see — only accept out-of-network benefits. My coverage pays only a small percentage, and with the likelihood of multiple procedures, the costs quickly become overwhelming.
Funds raised here would go toward:
-Out-of-network doctor appointments
-Necessary testing and surgeries aimed at restoring function and quality of life
-Travel costs, since these specialists are not in my state
If you’re unable to donate, even sharing this means more than I can express. This truly feels like my last chance to hold onto something hopeful. I worry about what further deterioration could mean, but I still believe there is a path forward with the right care and support.
Thank you for taking the time to read this, for caring, and for being here.
With love and gratitude,
Josh