Here on November 18th, 2014, just a little over a month shy of my 40th birthday, I want to be writing about how this has been an amazing year. I want to tell you about how the off-grid Airstream project is coming along beautifully, with plans to add a mobile version of the Japanese Bath House to the fleet. I want to tell you about the currach project we have in the works and a possible bid for the Race to Alaska in 2015. At the very least I want to express relief at a long year being over and looking forward to hours of drysuit clad solitude this winter, plying the waters of my beloved North Fork Nehalem River, casting for that most magnificent of fish, the steelhead trout.
But I’m not here to talk about any of those things today, I’m here to talk about being sick.
Truthfully, 2014 was a brutal year for me. As some of you know and most of you don’t, I’ve been fighting a losing battle against a mystery illness for the better part of the last 3 years. Chest pain, shortness of breath, wildly fluctuating blood pressure, orthostatic tachycardia, heart arrythmias, heat intolerance, exercise intolerance, violent panic attacks, weakness, and extreme fatigue. In 3 short years I’ve gone from being one of the strongest surf paddlers on the West Coast to someone who can barely make it through the work day.
Through 2012 and 2013 I was able to keep this mostly hidden from friends and students but cracks in the facade of my characteristic humor and enthusiasm during 2014 have forced me to face the fact that I truly am sick, and if I just keep forging ahead in my typical workaholic fashion I’m going to collapse, or worse. My condition is somewhat of a medical mystery, basic labs and a single echocardiogram appear fine, prompting physicians to label it as either “Unknown, not real, or psychiatric.” Given the severity of my symptoms this seems insane to me, especially considering that I have not had any further cardiac imaging, brain imaging, neurological testing, viral or bacterial panels, or testing for any genetic conditions.
Over the course of this process I’ve bled my savings dry and accrued more medical debt than I’ll ever be able to pay, I finally got insurance under the affordable care act only to have doctors refuse to order more tests, and insurance refusing to pay for specialists and the out of state facilities that are actually equipped to deal with complex cases like mine.
On the verge of a breakdown I reached out to others with undiagnosed illness and discovered an epidemic of sick people who have been sidelined by a system woefully ill-equipped to deal with mysterious chronic illness. In this process I also met other people though, I met people who fought every step of the way to get testing and to get care. I met people who found answers and got their lives back.
I made a choice, I decided I was going to be one of those people.
I’ve been a fighter my whole life. I put myself through college working two minimum wage jobs. I worked on an ambulance and shepherded the broken and bloody to safety. I led a fight to stop state-sponsored illegal logging on one of Portland’s main drinking watersheds, and won. I carved a profitable off-grid organic farm out of the north facing slope of a temperate rainforest and simultaneously built a beautiful business where dozens of amazing individuals come together every year to connect around a passion for kayaking, building things, and a deeper connection to earth. In short, I feel like I have valuable contributions to make to the world and I’m not going to let some goddamned mystery sickness take me down without a fight.
In a long and torturous battle with my ego and my pride, my sense of self-preservation won out and I’m going to do something I’ve never done before, ask for help.
Basically, I need a lot of medical testing and treatment that I have no conceivable way to pay for. I’m already bleeding money just in the beginning stages of initiating care with some of the most brilliant doctors in America, and am hoping to pay a visit to the Mayo Clinic diagnostic center by Christmas. These higher level physicians believe, that if I was an athlete 3 years ago and too sick to work today, that yes, there is probably something seriously wrong with me, and that’s a step in the right direction. To keep taking those steps I need raise some serious cash. To this effect I’ve created a Go Fund Me crowd-funding campaign for myself. I decided saving private Brian was just too cheesy, so we’re calling it the Cape Falcon Medical Fund.
With your help we can get me back on track toward being the ridiculous and gregarious individual the world needs me to be. If you decide to donate, thank you.
Finally, to answer the big question, what is going to happen with Cape Falcon Kayak and the 2015 build schedule? I can tell you now that I have every intention of teaching in 2015. I have set dates for both Port Townsend and San Diego which I will soon post online, along with dates for the spring and summer at the shop. Dates for the fall tour from Maine to Florida will be announced early next year. What is different than years past is that I won’t be opening enrollment for anything except the Port Townsend and San Diego classes (open Jan 1st) until March. The reason being that I have to get on top of this illness before I make commitments and start taking money from people. To be clear though, despite how I feel at the moment, I have every intention of getting better.
I will heal.
I will paddle again.
I will be teaching next year.
To close this rather serious and depressing update, I want to revive a tradition from the old site, sharing the best pictures I’ve collected over the course of the year. No crazy surf photos or mountaintops this time around, but the world is still beautiful when you move slower, and get closer. Enjoy.
November 2014
Your words are heartbreaking, not just because they are so horribly, personally true, but because I feel like I’m reading my own story. I’m one of those people with a “mystery illness”.
It was January 1994 and I had only been married 1 year, when I caught the flu right after Christmas. Oddly, some of the symptoms went away as usual, but some of the more serious ones…the serious body aches, the up and down fever, headache, and more…never went away. I still have them today.
And so it was that I was one of the first people, over 20 years ago, to develop what they dubbed (at the time) The Yuppie Flu. I was told I was crazy; I was accused of lying because I didn’t want to work; I was actually told I was lazy; I was told it was all in my head; It went on an on. I saw doctor after doctor, specialist after specialist. No one had any answers, but they all stuffed every drug known to man down my throat. From antibiotics to anti-psychotics, I had them all. Nothing worked. Even some of my more horrible relatives thought that I was simply doctor hopping to receive the pain medications I’d been prescribed.
I couldn’t work any more, which destroyed me: I worked at a great place in NY at a job I loved more than anything else I’d ever done. To this day, 20+ years later, I still miss my job and my former coworker friends.
Today, the “yuppie flu” is more properly referred to as Fibromyalgia and Chronic Fatigue Syndrome. It’s NOT psychosomatic: it’s been traced right down to the cellular level and is very real. It’s treated as an actual illness because it IS. But it took a long, long time and I went through hell waiting for it to be acknowledged. Unfortunately, that doesn’t change the fact that I’m still sick and probably will be for the rest of my life, but I’m glad that I finally found a doctor who will treat the symptoms non-judgmentally.
Don’t give up. Somehow, some way, you WILL get to the bottom of your mystery!
Now, I have a suggestion, but hear me out, because this is going to sound weird and crazy: Have you considered writing to Dr. Phil? Really. I mean it. I’ve watched his show for years and he has helped many, many people who are in positions like yours. He has SO many professional peers and friends that he can call on! And he DOES! And when he sets his mind to helping someone, let me tell you, that person gets more help than they could ever imagine. It’s worth a try.
November 2014
You are inspiring.
Count me in.
November 2014
Please before you blow $6,000 on a dicey bet at Mayo, get a modern Upright cervical xray, with flexion and extension views. It will have to be read by one of the very few (around 5) true experts in the country, and not by just a ‘good’ radiologist. Even if this specific test does not match your actual condition, this narrow approach will serve better than chasing the biggest names and best reputations to test everything.
You’re right the epidemic of the failure of medicine is appalling. The fact that doctors in general don’t know how to see that this is a problem just compounds the situation all the worse.
November 2014
I feel for you so much.
A few years ago I was a full time GP doctor, a sea kayak instructor and guide (bcu qualified), I helped run our local church, I was rebuilding a 300 yr old cottage and I built a SOF sea kayak using some of your products shipped to the UK. Now I can hardly get through the day. After years of faffing about (see – even being a dr in the system didn’t help) I have been diagnosed with ME. You could spend thousands and still get nowhere following other leads.
Hang in there – things do get better – but not always in the way you have planned.
November 2014
Sorry to hear that, Rhoda. Best wishes from NZ for your good health too!
November 2014
Rhoda,
Like you I’m schooled in medicin (anestesthetist). Unlike you I’m from Sweden. What does ME mean? I feel for Brian, but am not convinced of the “mystery illness” theory. And Brian, if you read this, I’m willing to expand on this, but only at your request, as I’m not sure It’s what you want to hear. And maybe have already heard…
December 2014
Please excuse my ignorance, but what is at ME?
December 2014
Brian,
Whoops, I didn’t know that the rest of my email did not post.
The end of the story? I don’t know yet, but I’m still here, still struggling mightily through ridiculous amounts of physical, emotional, and spiritual pain.
One piece of advice I’d like to send out to everybody. I found one friend, an old friend from high school, who is also sick. She and I have partnered up and scour the Internet for good information and good websites, and we share this information with one another.
This has a two-fold effect:
Yes, we are able to get more information, but the real benefit is that we’re supporting one another and we’re not alone.
The next post you’ll get from me will be a short list of the best Internet resources I have found with the help of my friend Lisa over the past two years.
In the meantime, drink plenty of water and do a gratitude list every day.
November 2014
I’m in. At least a qajaq’s worth.
November 2014
Brian, It was my pleasure to be able to finally meet you this year. I gladly donate to help you, a fellow qajaq man, on the road to recovery. Thank you for asking for help, that is a bold brave step. Take care mate.
November 2014
Brian, Thank you for posting. You will be both in my prayers and in my pocket as you pursue renewed health and strength.
November 2014
Lyme disease?
November 2014
Brian,
Sorry to hear you are still not well. I am using the F-1 we built in your workshop to paddle my way to restored health. Many ups and downs have been encountered along the way, but I’m progressing in a positive fashion. How could I not help you out… it would be not karmically suitable.
Ryc
ps you are welcome to join us at our house in San Carlos Sonora for R&Ron the beach any time Dec through Apr.
November 2014
David I am broken hearted to read this and my heart cries out to you. This has hit me pretty hard, so hard I am crying. I love you nephew and wished I could make you better. I know about the expenses I am over $3000000 in debt due to Diane’s illness and passing and my heart problems. David I love you and I will keep you in my prayers. I will keep in touch with you. Mike
November 2014
Brian, in regards to your current medical debt. Most hospitals have a “debt forgiveness” process that you can apply for. Make a request for it through their billing dept. It’s certainly worth a try to be relieved of the burden that weighs on you. Your symptoms are frighteningly familiar as I’ve been experiencing the exact same ones since 2011. I was recently diagnosed with some thing called “Postural Orthostatic Tachycardia Syndrome”. This was diagnosed by a cardiac electrophysiologist in Portland. You’ll be carried in my prayers.
November 2014
This is an excellent suggestion and — depending on the hospital — should be done simultaneously with or shortly after you receive services — better to be pro-active about this than to wait until you receive the bill.
November 2014
Hi Brian,
I can’t begin to tell you how familiar your story sounds to me! I’ve been there, and was there for 5 years. (Im not fully recovered now, but my health has improved a million fold since being diagnosed with Lyme Disease.) Mysterious hard to pin down symptoms that were debilitating, constant pain, condescending unhelpful doctors, and and a general sense of helplessness.
I gave up for a few years on figuring it out because I was so frustrated by my experiences with the medical community, and just figured this was the new norm. Finally, in the last year and a half I found a new doctor who took the time to listen, and to run a million tests, and to really take me seriously. I would highly suggest (as I did when I saw you today) that you make an appt with him!!
Finally, I just want to say that you are by no means alone (it looks like you already know this) and you WILL get better. You just have to fight like hell, and keep on fighting. I’ll be donating, and sharing your GoFundMe campaign as well!
Let me know if you ever want to talk, I know that feeling isolated can be one of the hardest parts. This journey has been the bardest of my life, but it has also taught me so much about myself, and about how I interact with others. Learning to ask for help has been a huge (and extremely hard) lesson for me. I applaud you for doing it, it is so so hard!
Take care, and really truly, feel free to reach out if you want:)
Ashley
amersereau@gmail.com
503 440 2514
January 2015
Hi Ashley!
I just wanted to let you know that not all doctors are condescending regarding Lyme disease.
But there is one catch; it really, really helps if one lives on Martha’s Vineyard off the coast of New England!
Doctors at the hospital there see hundreds and hundreds of cases of tumarilla, which is from rabbits, and also Lyme disease.
Unfortunately, it is primarily a serious problem amongst the Brazilian Portuguese who work in the lawn care industry for the wealthiest of the wealthy (Think President Clinton).
Now, what’s appalling to me is that everybody on the island, and I live there off & on for 35 years, knows that these workers get horribly ill because they do whatever they’re told to do in terms of cleaning up underneath the bushes, etc.
But does anybody do anything, or say anything, or God forbid put together an emergency fund for these people?
Of course the answer is no.
Hope your health continues to get better – hang in there!
Kevin
November 2014
I have a friend in Korea who has been diagnosed with mitochondia
disease. It took three years to grow into a debilitating condition and he was only diagnosed after contacting a doctor in sydney australia.
I can get more details if you like.
My friend davids explanation was that although he ate well or badly his body did not absorb food. This results in him getting cold from the inside a the body in the end was starving.
December 2014
Warwick,
That sounds exactly like celiac disease, which I was diagnosed with in 2013. So I suppose a gluten allergy could also explain our friend’s troubles.
November 2014
Please visit the http://www.fdncenter.org and search their database for foundations who support people with rare conditions; you may be surprised. There is one foundation http://www.sunshinelady.org which supports good people who have had bad luck — such as yours — and at a minimum you should definitely write to Ms. Buffett — perhaps with a printout of your message above along with a Use Of Funds budget to guide her decision making process. Good luck!
November 2014
My sister, who would know this stuff, says you should check for possible mercury poisoning from any amalgam of fillings you might have.
November 2014
Maybe something to do with that weird sudden illness you had paddling in Hawaii a few years back…?
November 2014
Hey Brian,
I’m a Naturopathic Doctor in Washington state and my girlfriend read me your story this evening. Without consulting your list of possible diagnoses, my initial thoughts were either pheochromocytoma, mastocytosis or an infectious disease. You can use the sodium/potassium ratio from previous blood work to get a ballpark of adrenal function (i.e. possible r/o addison’s dz). Usually imaging is necessary to rule out a pheo although you can check a urinary catecholamine (epinephrine and norepinephrine level) to get an idea. It is also fairly easy to check for ebstein barre virus or cytomegalovirus through the blood to rule out chronic fatigue syndrome.
I hope this helps in your search for a diagnosis. All the best.
November 2014
Parathyroid Disease
December 2014
Yes!
And the overactive parathyroid gland forces calcium into your kidneys, causing an epidemic of kidney stones. While at the same time your bones are not getting the calcium and so you begin to have weak bones, it may be filled out and break bones that you shouldn’t be breaking at your age and suddenly you have the skeletal system of an 80-year-old woman.
And let’s not forget that most of us don’t have enough vitamin D at least in the north, especially for those of us who work inside in offices. So the lack of calcium and the low vitamin D conspires to spiral the parathyroid disease out-of-control damaging yet other
Parathyroid glands making the disease a disease within a disease.
In other words, there’s primary parathyroid disease when one or more of your glands is out of whack. And then there’s secondary parathyroid disease, which is when your glands have settled down but your body is not completely out of whack in terms of calcium and vitamin D.
November 2014
Try going to Chile in south america you pay out of pocket but the cost is very cheap and most of the doctors are trained in america
December 2014
Amigos!
Good advice on the south American medical. Here’s another angle. Medical care in coaster Rica is excellent. Costa Rica is closer and there is actually websites that that specialize in medical tourism to coaster Rica, and factors probably medical websites for medical tourism to all the central and south American countries.
And this may not be to the point, but did you know that Germany allows citizens to take 2 to 4 weeks off a year and go to a health spa simply to relax and take the waters? Amazing!
November 2014
Hey Brian, sorry to hear this… I’m a fellow paddler and I live in Argentina. Here, the Health System is free for everybody. And pretty good. I am not an expert, but maybe you should start considering to come to Argentina. I know Jeff Allen, I took a course with him this year in Chile, which is next to Argentina, you can talk to him. Just a link:
http://www.justlanded.com/english/Argentina/Argentina-Guide/Health/Healthcare
Maybe even you could teach here, there are many paddlers around.
http://www.huffingtonpost.com/jacada-travel/adventure-travel-kayaking_b_5834650.html
If I can help you with anything, information, or whatever, dont hesitate to write,
Good Luck!
December 2014
Brian – Though we’ve never met, I reached out for help with my SOF Greenland boat a couple years ago and appreciated your suggestions. In a twist of fate I actually ended up living in Wheeler for several months and came to love the area. I’m now back in New England for work, and your symptoms sound all too familiar to me as Lyme disease. The medical community is split as to how to treat it, and it’s tough to find doctors that are willing to listen and consider that it might be something that “doesn’t exist” in the Pacific Northwest according to the CDC. Lyme can affect people differently and progress quite slowly – it’s a long road but it is entirely possible to get your health back. If you do get a diagnosis, there are lots of Lyme support forums online. Hang in there and good luck!
December 2014
Dear Brian,
I don’t know you, and I don’t even know how I got on your mailing list, but none of that matters.
The fact is, we have much in common, including our love of wooden kayaks and off grid transportation. I’d like to quickly share what I’ve gone through since 2010, when the chemo that “cured” me seem to send me on a downward spiral into the bowels of hell:
1.) approximately three kidney stone episodes a year for five years in a row.
2.) depression, brain fog, chronic pain, mood swings’s, and the eventual destruction of any normal sleep cycle that I may have had.
I guess I got lucky with a good primary care, a great hospital that is a harbor teaching hospital you’re in Boston and as luck would have it a series of specialists at the top of their field who despite all of their passion and knowledge and commitment could not figure out what in the hell was wrong with me.
It was, quite simply, a cascading effect of systems failing, one after another, after another. Like this:
Kidney stones turned out to be caused by parathyroid disease. Calcium was going into my kidneys and causing stones but not going into my bones, so by the time the diagnosis came through I had the bones of a 75-year-old woman, Plus all the central nervous and psychiatric disability that comes from having serious calcium and vitamin D deficiencies.
Hey wonderful surgeon removed the offending parathyroid from my neck and kept me relatively scar free by following the folds in my skin.
But I was not getting better.
After a year of megavitamin therapy, 50,000 international units of vitamin D once a week for eight weeks on and then 1000 mg a day for eight weeks, and back to the 50,000 international units for eight weeks on plus calcium plus this that and everything, my Endrow come out just said, “you’re not digesting properly I think you have celiac disease, let’s give you the test”
Jen I have celiac disease? Yes I did. I had the worst case the gastroenterologist who ever seen. In fact, my numbers were so whacked that they didn’t even show on the traditional chart.
The only treatment for celiac disease is to maintain a diet free of wheat, gluten, and a few other grains that cause your intestines to swell up and begin to not digest nutrients.
So Brian, where are we so far? Not done yet my friend! So after 18 months of judicious eating patterns, where I absolutely refused to eat anything that had gluten or wheat or anything else and after I had gained 100 pounds from becoming a horribly addicted to Ben & Jerry’s ice cream ( yeah, go ahead and laugh, I’m talking 4 to 5 pints a day, completely out of control).
After all that, I was tested again with the colonoscopy and a camera and was told that my upper G.I. was in almost perfect condition and the surgeon complemented me saying that it was the best recovery he had ever seen.
But why did I still feel horrible?
No appetite. Couldn’t stop eating. Brain fog. Headache. Horrible arthritis. Peripheral neuralgia that cause me to have to walk with a cane. Intense mood swings. And, just to keep things interesting I developed three different and distinct forms of insomnia:
1.) REM Disorder
2.) sleep apnea
3.) non-specific circadian rhythm dysphagia that basically meant that I could sleep, starting at any time on the 24 hour clock either one or two hours, or upwards of 30 hours all at once. Or neither. Or both. Now, the relationship between stress, insomnia and eating disorders is well known.
So after two years of being treated for parathyroid disease, depression, chronic pain, insomnia, celiac disease, morbid obesity, sleepwalking, narcolepsy (yes, narcolepsy), irritable bowel syndrome, diarrhea, constipation, Night terrors, PTSD, and at least a half a dozen other things i’ve probably forgotten about because of course my short-term memory is shot, my long-term memory is on its way out and I’m beginning to forget simple things, like my first name for example, I went to my endocrinologist, who out of my six specialists was the one person who I trusted the most, and I sat in her office and I said the following:
“dr., I’ve done everything you folks and told me to do, I’ve been a good patient, I haven’t cheated, I’ve been compliant to the best of my ability through every procedure every dietary change, and every new medicine you try on me.
But the fact of the matter is I don’t feel any better now than I did five years ago, and I was wondering if we could take my primary care and you six specialists and sit down at a conference table some afternoon and talkand talk and talk and talk and talk and talk until we figure this thing out.
Because I am at the end of my rope. I’m going to kill myself. And I’m not saying this to be dramatic, I’m saying this because I can’t take it anymore, and if the next 15 or 20 or 25 years on this earth is nothing but one series of doctors appointments after another with no effects of the change I am going to blow my brains out – please help me.
Well, she said wer
December 2014
Kevin, you can’t leave us hanging, what’s the rest of the story?…
December 2014
Brian,
So sorry to hear of the problems you’re having. We will be praying for you for healing. I’ve always admired your work ethic. No matter what the task or idea, you’ve set your mind to and done it! I’m sure you will overcome this thing. Don’t be too hard on medical community (of which I am a part). If it were only as easy as plugging a device into an OBDII port to find an error code!
Several years ago, I dreamed of owning one of your boats and could not find time to come build with you. You sent me a boat (SC1), unpaid, to try. Very trusting of you. Best boat I’ve ever owned and I’ve had some good ones.
I will contribute to your medical fund. I only wish it could be more. Please fight it with all you’ve got!
Mike Predmore
December 2014
Brian,
You must check out a website called Crowdmed:
https://www.crowdmed.com/
Don’t know if you’ve heard of it or not. It is a for-profit site where you submit your symptoms and medical history. Experts (vetted) try to solve your medical mystery. The money you put up is divided among the experts that solve your mystery.
If it was mentioned already please forgive me, I did not see it. As soon as I heard about this, you came to mind.
Mike
December 2014
Really sorry to hear about your mystery malaise. Just to quickly tick an easy checkbox, you might want to check for trigger points in sternocleidomastoids, scalenes and levator scapulae (also masseter, pterygoid, trapezius, etc). I experienced sudden heart palpitations and resulting panic disorder, which has now abated with both knowledge and trigger point therapy of those related areas. Best wishes. Next yak is definitely an F1 😉
January 2015
Have you tried IV fed vitamin C treatment? We’re talking big big dosage here over a 3-5 day period of about 50 to 100 GRAMS (yes, grams, not milligrams) per day. Please do some web research to see the simply amazing results and cure rates for any number of ailments. Here is a great starting point video by a physician on vit Cs history and startling results. Worth a try!!! https://www.youtube.com/watch?v=GpptUsJFCEY
January 2015
My heart hurts to read your and others stories. I am one of the many that suffers from an “unknown” so the stories are close to home for me. This all can make a person feel like they are insane. You are not! Your symptoms are real…… don’t ever give into that thought process, ever.
Find (barter?) someone that can teach you effective relaxation methods. You gotta keep sane!!
Have someone go to appointments with you so that you have a second ear. That person takes notes while you talk with the doctor
Give your support people lots of love. They are in this with you and are on the same emotional rollercoaster as you are. This can be in the form of just a simple silly drawing with a short note.
Multiple Sclerosis can have some freaky and vague symptoms
A side note: My issue is that I gain at least one pound a month on average all the while I eat impeccably and work out 6 days a week. It is all fun and games until the scales start working towards 350!
January 2015
I can relate to the weight gain, but one of the ironic, and somewhat amusing, events that occurred during my own weight gain, was stepping on the scale and not having to work because I was too heavy to register on that particular device.
You know you’re overweight when you have to go out and buy a bariatric scale that weighs people who are the 350 pounds plus!
I suggest you get a scale that measures the relationship between your lean muscle mass and you’re fat. They send a little current electricity through your body. My point is, if you’re eating well, and you’re exercising six days a week, The weight gain may be in muscle mass, rather than fat.
And for all of us who are sick, please, consult your doctor before you start an exercise program because we really do need special programs.
January 2015
Brian;
Do you eat wheat? I had the same symptoms as you, but not as severe. Two years ago I stopped eating wheat (gluten), and all my symptoms vanished. I was tested for wheat allergy – negative. Tested for all sorts of other stuff as well – nothing. Try going gluten free for a few weeks and see how you feel. It did wonders for me. Best of Luck!
February 2015
I love your photographs! Really good.
Sounds like you’ve got worms. They are common here in central America. Mebendazole will effect a complete cure.
Hasta Luego!
April 2015
Hey Brain your YouTube videos and blog got me here. Saw your pics and the one of the cat. Google diseases from pets. Just something to think about. In my prayers!
July 2015
Deeply sorry to read about your troubles. You struck a chord with me about the medical system not being equipped for this kind of thing. It seems to me that the medical system is now only capable of one thing: giving you a ten minute appointment to match you with one or more pharmaceuticals. I’ve given up on it unless I am in serious need.