Cape Falcon Medical Fund
Three years ago I started having chest pain, shortness of breath, and fatigue. At first I wrote this off as just getting older and kept up my lifestyle of surfing, running, kayaking, and working more than I should.
By 2013 it became clear that something more serious was wrong. I became heat intolerant, I couldn't exercise, I started having heart arrythmias and panic attacks, my chest pain was debilitating. Trying to find answers, I liquidated all of my personal savings on out of pocket medical expenses for conventional and naturopathic care. After nothing more than basic labs and a single stress echocardiogram I was repeatedly told that there was nothing wrong with me, and prescribed medications to deal with the symptoms which rarely worked and in many cases made me sicker.
In early 2014 I ran out of money and my pain became constant. My blood pressure started to fluctuate between 210/110 all the way down to 100/60, there were times I had a weak pulse and trouble breathing, and others that my skyrocketing blood pressure and heart rate caused violent panic attacks that set my nerves on fire. Keeping up appearances became a serious challenge. Finally, in July I recieved coverage under the Affordable Care Act, and began seeking care again. I saw new doctors only to be dismissed yet again as not having a "real" problem despite the fact that my life now consisted of nothing but work, pain, and more pain. There were nights that I was afraid I would die, and nights that I wished I would die. Something was eating me alive and anyone who knew the vibrant, athletic person I was four years ago could clearly see that I was barely making it day to day.
It was then that I realized just how ill equipped our medical system is to deal with complex, difficult to diagnose illnesses. I sought out other people dealing with difficult chronic illnesses and what I found was an epidemic of extremely sick individuals who had been essentially abandoned when their diagnosis proved to be too complex for thier local hospitals to deal with. I was told the same thing over and over: "Nobody will believe you, nobody will try to dig deeper, you have to be proactive or you will get sicker." I met people far sicker than I am now, I met people who were almost dead, people that never recovered. I also met people that through tremendous effort on the part of themselves, friends, family, and amazing doctors DID FIND ANSWERS, DID HEAL, AND DID GET THEIR LIVES BACK.
Joyless, suicidal, and on the verge of losing my business I made a choice. I decided I was going to be one of those people, one of the ones who healed.
I decided that the level of testing I'd recieved was a joke, and started pushing hard for further testing. I stopped listening to my doctors and actually started doing my own research, and the picture that emerged is one of the complex science of medicine moving much faster that primary care doctors and even specialists can keep up with. The human body is staggeringly intricate system and doctors can't be blamed for not having the whole picture but what they can be blamed for is a lack willingness to explore beyond their current level of understanding, or worse, to diagnose or dismiss based on knowledge that hasn't been updated since medical school. Questioning this, one is almost universally met with a condescending, paternalistic attitude that is both a reflection the stress under which primary care physicians are compelled to practice, and the flawed system that does not view the PATIENT as an important part of the care process.
I decided that if I had any hope of saving myself I needed to bypass the glacial pace of my primary care trajectory and go straight to the people who actually had the tools to investigate the deeper causes of my illness.
Since then I have spoken with some brilliant physicians, curious, humble, collaborative individuals across the country who while dissapointed at my story, weren't in any way surprised by it. People who actually believe that if I was surfing big waves four years ago and now I can barely walk up the driveway, there indeed must be something physically wrong with me! Something we can diagnose, something we might be able to treat.
That's the good news.
The bad news is that all of this costs money, and very little of it is covered by my insurance. Neurofeedback therapy, genetic testing, specialty naturopathic care, and hopefully a visit to the Mayo Clinic diagnostic center, all of these places are scattered across the country and the costs for some of the tests I need, let alone the treatment ranges into the tens of thousands of dollars.
As a former workaholic and a by-the-bootstraps self-made individual, I've never asked anyone for help with anything before. It destroys my pride to be writing this appeal, but I've made peace with the fact that all of us will fall down at some point in our lives, and as much as it feels like it, there is no shame in that. I also see this as being about so much more than myself. There are so many very sick people out there who have been wrongly told that there are no answers, nothing more that can be done, and it infuriates me to see people far sicker than I am who have been basically left to die without ever getting more than basic medical testing.
As those of you who have followed me over the years have likely figured out, I am more than anything a storyteller. Rather than suffer as a victim, it's my intention to follow my own illness with the same passion that I've reported on all my adventures over the years. It's a detective story, a story of personal transformation, and most of all, a story of social justice that needs to be told. Throughout this process there have been key individuals that helped be find the strength to keep fighting, and I can only hope to do the same for others.
Even as I write this, sicker than I've ever been, I have hope.
I believe I will heal.
I believe I will be teaching again in the near future.
I believe that I will paddle, and surf, and run again.
Despite the constant pain, I believe I am on this journey for a reason, and that reason will become clear in the end.
Thank you for your donations, all funds that I recieve in excess of my own needs will go directly toward helping others in similar need. I will keep a running blog on my website to keep people up to date on what answers we find as we find them.
I feel like this might be due to some toxic substance you were exposed to. Also, my friend Janet arrived here on the scene quite ill and she hooked up with a very amazing Dr. of Chinese medicine (from China) who she worked with over a period of time and still occasionally sees. We have some other talented practitioners of Chinese medicine for everyday things but this man is the go-to for the hardcore issues....or so it's my understanding. I intuitively thought of this (never have recommended him before) when I saw your plea for help. Also, are you familiar with adrenal depletion? Be sure to nourish that with infusions of herbs like nettles everyday as this stress and illness can be, as you know, a pretty nasty feedback loop. As you said, there are a lot of us around here who have become ill (me included) and could not find answers and had a long, uphill struggle to find healing. If I could offer any final words of wisdom it would just be to use your own intuition and gut to guide you to solutions. Follow that above all else.
Brian, I'm a former kayak tour operator who did lose her business with symptoms and a story really similar to yours. I finally met people with late stage Lyme disease and realized I became ill after tick bites in E. WA. I'm doing fundraising for myself, and am healing from my 5th whiplash injury, so have no $$ to share, but would like to offer any experience, treatments, etc with you if you want to explore this.