- J
- J
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I never thought I would be in this situation... but here I am: the founder of a nonprofit that helps patients and caregivers, now in need of help myself.
I hope that you understand this is incredibly hard to for me to write; vulnerability and asking for help do not come easily to me.
You may not be familiar with CFS/CFIDS or ME , but most of you probably have a close friend or loved one suffering from a chronic medical condition. If you have ever seen a friend or family member start to wither away, YOU CAN RELATE TO THIS.
If you've seen someone cry in pain and you were not able to do anything to help them. You can relate to this.
If you or someone you love has seen dozens and dozens of doctors with all sorts of misdiagnosis and have not been able to help...YOU. CAN. RELATE. TO. THIS!
Despite all the healthy ways I lead my life my body has failed...again.
When I was in the IBC Hospital 7 years ago, I was getting treatments in one arm and answering patient questions live on social media and blogging to show other people seeking treatment what this experience is like.
SOME BACKGROUND ON THE NONPROFIT I FOUNDED HELPING PATIENTS & CAREGIVERS WITH CFIDS/CFS & ME.
I founded a nonprofit, Bent But Not Broken (BBNB) in 2010, after years of battling CFS/CFIDS myself. I started this to help CFS/CFIDS and ME patients (like me) get the medical treatment they needed to continue living their best life to the best of their ability. I felt so lucky that with the resourcefulness of my parents, I was able to find a hospital that would initially diagnose and treat my chronic illness. I knew that not everyone had access to these resources, so I set out on a mission to help. I wanted to provide resources to patients & caregivers struggling in the same way that my family and I have.
With the help of an incredibly talented board and amazing volunteers I was able to throw events and raise money to help patients across the nation through a grant process. (more info on the nonprofit in the links throughout this post)
---------------------------------
WHERE I AM NOW
In the last 6 years, I have required constant treatment for other ailments like cluster headaches, severe adrenal, and hormonal fatigue treatment, fibromyalgia pain, constant colds/flus from a compromised immune system. All of this has resulted in missed time with friends and family, physical limitations, and inability to work consistently; saying it's been a rough go would be an understatement! I think the people close to me can attest to the constant roller coaster of health that is my body. I am grateful that I have not needed to seek more serious medical treatments during the last 6 years. I do my best to NEVER let go of a "can do" attitude: I always tell myself that I've been through worse so I can get through this.
The state of my health has changed incredibly quick over the past 8 months. I've experienced a major uptick in chronic pain that has left me bedridden or feeling like my body is on fire. My body is physically and visibly rejecting medication (of all kinds naturopathic and pharmaceutical) that I've tried from various doctors. I have gained 15lbs in just 3 weeks time (a big indicator of a health issue for my body) and have experienced an increasingly painful gut, muscular and neurological issues. After months and months of denying that I was going downhill, I have no other choice but to surrender to what my body is fighting.
I have left no rock unturned before resorting to the treatment that gave me relief at my initial diagnosis and seeking help for funding it.
-----------------------------------------------------------
WHERE I FOUND HELP AND TREATMENT
In the year after graduating from college, I was able to seek treatment at a facility in Mexico called International BioCare Hospital located in Tijuana, Mexico. I blogged about my experience to set an example to those suffering here in the states that there is help. There is light at the end of the tunnel! You can see youtube videos from my stay on BBNB YouTube Channel and read more about the hospital and it's staff on the BBNB Blog. My mom (and life long cheerleader) gave an interview for a local news story about Bent But Not Broken; the behind the scenes news footage includes her speaking candidly about leaving the US for treatment.
Another short video of Nancy explaining how hard it was to make the decision to seek care outside of the US HERE
-----------------------------------------------------------
WHAT I NEED FROM YOU TO GET TREATMENT
In short, I am hoping to raise the cost of my treatment, which is $15,000.
I'll be in the hospital for 2-3 weeks in Tijuana and have a follow up 3 months after. Over the course of 6 months my body will likely start to accept healthy stem cells and start attacking or letting the unhealthy ones die off (clearly not a medical description, only trying to keep things simple to explain).
---------------------------------------------------------
TREATMENTS THAT I'LL BE RECEIVING:
- UV Blood Treatments
- Daily 8 hours of Chelation Therapy
- Daily visits to the oxygen chamber
- Other detoxifying treatments I'd rather not get into detail about (happy to answer questions personally if you have some)
- Autologous stem cell injections
- gut restoration protocol
- brain scans to detect inflammation and neurological assessment
- live blood cell analysis. Video from my blood 7 years ago
The hospital usually requires payment before your stay is complete, HOWEVER, they are extending my payment schedule through December 15th in order for me to raise enough money via GoFundMe so I can pay the bill. I've done my best to offset costs by offer any support I can to the hospital’s business in the form of blogging during my experience and helping to modernize some of their collateral. This is thankfully bringing the cost down to 1/2 of the typical rate. I'm doing everything I can to make this treatment a reality.
---------------------------------------------------------------------
WHAT HAPPENS IF I DON'T GET TREATMENT
Essentially I wither away. The CFS/CFIDS takes over my life and the fatigue creeps into my brain causing cognitive breaks in basic functions; like talking, reading, writing, and basically the functions most humans need to exist in a community or relationships.
------------------------------------------------------------------
A HUMBLE THANK YOU
I can't tell you how appreciative I am if you read my full story. Hopefully you will be able to be one of the many that make this treatment possible. I do my best to live every healthy day with passion to make a difference in the world and that's not something I'm ready to let go of. If you have any questions, please let me know. This is a very transparent process, asking others for funding, so I am an open book to answer any inquiries you may have.
PLEASE SHARE THIS WITH YOUR FRIENDS, FAMILY, COLLEAGUES. YOU NEVER KNOW WHO CAN RELATE...
Resources for the curious ones:
Medical tourism average costs compared the the US HERE
Largest medical research and BioBank provided by Solve ME/CFS Initiative
I hope that you understand this is incredibly hard to for me to write; vulnerability and asking for help do not come easily to me.
You may not be familiar with CFS/CFIDS or ME , but most of you probably have a close friend or loved one suffering from a chronic medical condition. If you have ever seen a friend or family member start to wither away, YOU CAN RELATE TO THIS.
If you've seen someone cry in pain and you were not able to do anything to help them. You can relate to this.
If you or someone you love has seen dozens and dozens of doctors with all sorts of misdiagnosis and have not been able to help...YOU. CAN. RELATE. TO. THIS!
Despite all the healthy ways I lead my life my body has failed...again.
When I was in the IBC Hospital 7 years ago, I was getting treatments in one arm and answering patient questions live on social media and blogging to show other people seeking treatment what this experience is like.
SOME BACKGROUND ON THE NONPROFIT I FOUNDED HELPING PATIENTS & CAREGIVERS WITH CFIDS/CFS & ME.
I founded a nonprofit, Bent But Not Broken (BBNB) in 2010, after years of battling CFS/CFIDS myself. I started this to help CFS/CFIDS and ME patients (like me) get the medical treatment they needed to continue living their best life to the best of their ability. I felt so lucky that with the resourcefulness of my parents, I was able to find a hospital that would initially diagnose and treat my chronic illness. I knew that not everyone had access to these resources, so I set out on a mission to help. I wanted to provide resources to patients & caregivers struggling in the same way that my family and I have.
With the help of an incredibly talented board and amazing volunteers I was able to throw events and raise money to help patients across the nation through a grant process. (more info on the nonprofit in the links throughout this post)
---------------------------------
WHERE I AM NOW
In the last 6 years, I have required constant treatment for other ailments like cluster headaches, severe adrenal, and hormonal fatigue treatment, fibromyalgia pain, constant colds/flus from a compromised immune system. All of this has resulted in missed time with friends and family, physical limitations, and inability to work consistently; saying it's been a rough go would be an understatement! I think the people close to me can attest to the constant roller coaster of health that is my body. I am grateful that I have not needed to seek more serious medical treatments during the last 6 years. I do my best to NEVER let go of a "can do" attitude: I always tell myself that I've been through worse so I can get through this.
The state of my health has changed incredibly quick over the past 8 months. I've experienced a major uptick in chronic pain that has left me bedridden or feeling like my body is on fire. My body is physically and visibly rejecting medication (of all kinds naturopathic and pharmaceutical) that I've tried from various doctors. I have gained 15lbs in just 3 weeks time (a big indicator of a health issue for my body) and have experienced an increasingly painful gut, muscular and neurological issues. After months and months of denying that I was going downhill, I have no other choice but to surrender to what my body is fighting.
I have left no rock unturned before resorting to the treatment that gave me relief at my initial diagnosis and seeking help for funding it.
-----------------------------------------------------------
WHERE I FOUND HELP AND TREATMENT
In the year after graduating from college, I was able to seek treatment at a facility in Mexico called International BioCare Hospital located in Tijuana, Mexico. I blogged about my experience to set an example to those suffering here in the states that there is help. There is light at the end of the tunnel! You can see youtube videos from my stay on BBNB YouTube Channel and read more about the hospital and it's staff on the BBNB Blog. My mom (and life long cheerleader) gave an interview for a local news story about Bent But Not Broken; the behind the scenes news footage includes her speaking candidly about leaving the US for treatment.
Another short video of Nancy explaining how hard it was to make the decision to seek care outside of the US HERE
-----------------------------------------------------------
WHAT I NEED FROM YOU TO GET TREATMENT
In short, I am hoping to raise the cost of my treatment, which is $15,000.
I'll be in the hospital for 2-3 weeks in Tijuana and have a follow up 3 months after. Over the course of 6 months my body will likely start to accept healthy stem cells and start attacking or letting the unhealthy ones die off (clearly not a medical description, only trying to keep things simple to explain).
---------------------------------------------------------
TREATMENTS THAT I'LL BE RECEIVING:
- UV Blood Treatments
- Daily 8 hours of Chelation Therapy
- Daily visits to the oxygen chamber
- Other detoxifying treatments I'd rather not get into detail about (happy to answer questions personally if you have some)
- Autologous stem cell injections
- gut restoration protocol
- brain scans to detect inflammation and neurological assessment
- live blood cell analysis. Video from my blood 7 years ago
The hospital usually requires payment before your stay is complete, HOWEVER, they are extending my payment schedule through December 15th in order for me to raise enough money via GoFundMe so I can pay the bill. I've done my best to offset costs by offer any support I can to the hospital’s business in the form of blogging during my experience and helping to modernize some of their collateral. This is thankfully bringing the cost down to 1/2 of the typical rate. I'm doing everything I can to make this treatment a reality.
---------------------------------------------------------------------
WHAT HAPPENS IF I DON'T GET TREATMENT
Essentially I wither away. The CFS/CFIDS takes over my life and the fatigue creeps into my brain causing cognitive breaks in basic functions; like talking, reading, writing, and basically the functions most humans need to exist in a community or relationships.
------------------------------------------------------------------
A HUMBLE THANK YOU
I can't tell you how appreciative I am if you read my full story. Hopefully you will be able to be one of the many that make this treatment possible. I do my best to live every healthy day with passion to make a difference in the world and that's not something I'm ready to let go of. If you have any questions, please let me know. This is a very transparent process, asking others for funding, so I am an open book to answer any inquiries you may have.
PLEASE SHARE THIS WITH YOUR FRIENDS, FAMILY, COLLEAGUES. YOU NEVER KNOW WHO CAN RELATE...
Resources for the curious ones:
Medical tourism average costs compared the the US HERE
Largest medical research and BioBank provided by Solve ME/CFS Initiative