Desperate times, desperate measures

[I] want to confess a few things and share some raw, bloody truths. I want you to enjoy a laugh or two at my expense. This morning, I feel compelled to catalog my misfortunes and misadventures.  So here goes. I’ve been ill for around 10 years, and I’ve no doubt this list will grow over time as I remember more things that belong here.

I walked down a snowy trail one morning in 2007 crying hysterically and shouting loudly “I want to live” over and over. After stopping Ambien abruptly, my nervous system had gone berserk. On top of the chronic fatigue, physical weakness and stomach pain that had dogged me for a couple years, I now had motion sickness, anxiety and insomnia. I felt like I was dying.

Looking down from a bridge at a fast-moving icy river below, I imagined jumping in and experiencing relief from all the pain. All I could see and feel in my life was pain and suffering stretching back a couple years with no end in sight. Then I thought about my kids back in Florida and got back in the car.

We moved out of Florida on a moments notice when my health was spiraling out of control and lost all of our home equity and savings. The financial crisis was raging and our house was surrounded by homes in foreclosure. So, at the closing, we ended up paying the buyer of our house a big chunk of money, the last of our savings, to take the house from us.

Although I was raised as an atheist, I started praying. As they say, there are no atheists in foxholes. I particularly liked the serenity prayer and “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me…”. I also like something I read in How to Stop Worrying and Start Living which goes simply, “Oh lord, thy will be done, not mine.” Now, I say my own prayer when I wake up which is more like a reminder of how I want to live my life every day. I don’t worry too much about whether God exists or in what form – I don’t need to know, there’s still magic in letting go of the idea that we control everything.

I enjoyed reading survival books. Two in particular that were very memorable include Angels in the Wilderness: The True Story of One Woman’s Survival Against All Odds and Deep Survival: Who Lives, Who Dies, and Why.

IMG_0914Six months before discovering my heavy metal toxicity, I spent a couple thousand dollars building a rocking bed. A couple times a year (before starting my current treatments) I would miraculously sleep for six hours uninterrupted and feel 80% better the next day. Poor sleep quality might be my oldest symptom, going back to when I was 10 years old, so I thought maybe sleep was the root of everything. I thought about how easily and well I slept on a train or airplane and began looking at the idea of trying to simulate that in my bedroom. When I came across the Swiss rocking motion study, I knew what I had to do – build a big rocking cradle! I automated it with a motor and everything. Although it didn’t fix my sleep it was a very fun project and I like my swinging bed a lot. I’ve since stripped the motor off it to use it on another project, but still enjoy feeling the bed rock momentarily when I move around at night.

Before I built the rocking bed, I played the noise of a train at night through speakers sitting on a board that ran under my mattress. I loved the sound of the train but the vibration made me nervous and I couldn’t sleep with it. Bizarre because I sleep so well on a train.

For a couple years, I ate 4 to 5 pounds of broccoli a day. On my flight to the Mayo Clinic, I almost caused a riot on the plane because of the noxious gas I was producing. Why was I eating so much broccoli? Cortisol ruined my stomach lining but eating relieved the pain. I decided to eat constantly instead of using proton pump inhibitors (which I also did for about a year) and broccoli seemed to work well, allowing me to eat all day without gaining weight. Ironically, I eventually discovered that I only needed to stop taking all supplements to let my stomach lining recover. That’s the one contribution to my recovery made by the Mayo Clinic – they suggested I stopped taking supplements.

An Angel investor put $1.3 million into my Internet company a couple years before I became very ill. Needless to say, it hasn’t been a good investment and may soon result in a near total loss for him. My company is still alive and kicking and could stage a comeback but so much time has gone by, that my investor is now at the point where he’s putting his affairs in order so he doesn’t leave a mess for his kids. Even though the loss won’t affect him materially, at times, the situation makes me feel like vomiting.

I purchased a house that I couldn’t afford where I hoped to recover. While still recovering from my nervous breakdown, my landlord gave us 30 day notice to leave the house I was renting. I couldn’t find another house to rent that was large enough to accommodate the two offices we needed and  met all of my health needs (near enough to my parents, no fresh paint or rugs, no mold, at least four years old, near the mountains for clean air, etc) and then the perfect house appeared, two blocks from where we were living with everything we needed and more. The owner had allergies and built it to minimize them with no rugs and radiant floor heat. I tried to convince the seller to rent it to me but he said no. It was a very expensive home and we had been cleaned out by our emergency move from Florida. So, I called my investor and tried to convey the idea that if I didn’t recover my health, there was no company. Naturally, he didn’t like the idea, but gave me his blessing, and I’m eternally grateful. That was one of the most painful phone calls I’ve ever made in my life. Didn’t want to do it, but I couldn’t see any practical alternative. Along with the money we spend on organic food, supplements and therapies, the house has kept us living on the edge financially.

I hate Facebook but still read it like a moth drawn to the flame. I’m reminded every day I read updates from family and friends how wonderfully frivolous and oblivious most people’s lives are. I’m reminded that no one wants to hear about my steady stream of misfortune and suffering ticking off day by day, month after month and year after year. Facebook is mostly for clever, lucky, active, healthy people living beautiful shiny lives. I’m reminded that the people who read my blog are my fellow sick or recovering friends. No one else can stomach it. I’m still struggling to understand this but I think I could summarize it like this — if you didn’t get hurt in some easy to understand way and suffer relatively short in duration like an accident, natural disaster or have cancer, you won’t find much understanding in the mainstream. On Facebook, you’ll do best to look for private health groups.

Walking barefoot on rocky trails helps my sore feet. Because I can’t run due to exercise intolerance, I began walking up barefoot and trotting down barefoot. It gave me the feeling of speed almost as if I was running again, with some danger thrown in – very exciting. Later, I decided my exercise was wearing me down too much and now I do much less. I’ve since invented a number of dynamite massage tools (with possible commercial potential) that I use every day for dealing with my tendinitis.

For a couple hours, I can fake being healthy. I guess that’s pretty cool. It’s getting easier too as some of my symptoms are fading with my current treatment.

Living on the edge financially and physically for the last five years has frayed our nerves terribly. I’d say we have a good case of combat exhaustion and are close to having post traumatic stress disorder. We need relief and we need a vacation.

Ok, I feel better now… did you laugh?

14 thoughts to “Desperate times, desperate measures”

  1. This did not make me laugh. Having been plagued into being a sickly hermit, I feel almost as though we are kindred spirits. It was heart warming, sad, and many other things all at the same time.

    What I just read was maybe the most open and honest expository on what living in the trenches of sickness is really like… Behind the scenes when no one is looking.

    Thank you for sharing.

    1. thanks for your thoughts Matthew, appreciate your sympathy and I wish you speedy healing!!

  2. omg thanks for making me laugh as hard as i’ve ever! i once thought that eating enough broccoli would cure anything! and the rocking bed—oh goodness; i get it!!!! i can remember begging my mom when i was about 6 years old to give me “sominex.” i saw the commercial on tv of the guy walking about 3 ft off the ground because he felt so good after a good night’s sleep. i used to cry when i had to go to bed at night because i knew i’d just lie there and be tortured by my insomnia. u r 2 funny!

    1. Ha! You mean people read these old posts? Thanks for writing Susan glad you enjoyed it. In fact, you reminded me about something and I just updated the post with this:

      Before I built the rocking bed, I played the noise of a train at night through speakers sitting on a board that ran under my mattress. I loved the sound of the train but the vibration made me nervous and I couldn’t sleep with it. Bizarre because I sleep so well on a train.

  3. dear Eric
    i from one of the Middle East country and very posining with heavy metal (we have not hair test lab to assure what heavy metal )
    by the way my symptome sugest Aluminium toxiticity
    here w can not fine a good doctore to relife my pain and chelate me
    i khnow Dr.cutler have suggest to chelate Aluminium in brain and bone in his book (Hair test)
    but for limitation i can not buying this book
    if you have this book and read it please help me and say what material must i used to safly dettox Aluminium
    very thanks

  4. Merry Christmas and Happy New Year to you, Viking!  I hope and trust that your health continues to be refined and well!
    Eric, on the theme of survival, I watched 180 Degrees South again on Netflix last night.  Great documentary, if you haven’t seen it.  The movie speaks more of adventure than survival, but there are many parallels to our experience that I found noteworthy.  I jotted a few of them down, and thought they might make you smile…
    “Who gives a shit what the Holy Grail is.  The quest is within yourself.”

    “The word adventure has been overused.  For me, when everything has gone wrong, that’s when the adventure starts.”

    “The best journeys answer questions you didn’t even set out to ask.”

    1. Yes very enjoyable movie that is! Reminded me of my footloose days… hope to be able to travel to places like that again someday:)

  5. Eric & Tara,
    I realize that you are trying but I really think that you should simply turn Facebook off. Permanently.
    What Eric writes about looking down in to the cold river is something that I can very much relate to. I had severe suicidal depressions for 20+years. And that is exactly what it sounds like, i.e. you mainly think about killing yourself. All day long….. When I took out my fillings I had this for several months and then it would come back for days or weeks.
    I now understand that this is a common mercury issue and Cutler have written a fair amount on the topic. Also, as absurd as it may sound, you get used to it.
    Anyway, the point right here is that I had this and many other serious issues for a long time and nobody ever knew. In this world, it is simply not in your own best interest to tell anybody. And yes, that is less than fully honest and possibly other people would be helped if I stood up. But I can’t take it, at least not so far. And I do look like a reasonably successful person. Nobody even suspected that I have had very serious problems.
    So, based on my personal experience, I am fairly certain that a lot of what you read on Facebook is just make believe, i.e. people write what they think is needed in order to look happy and successful.  
    Just ignore it and focus on getting better!
    All the best and a very Merry X- Mas!

    1. There’s no doubt in my mind you’re right about Facebook Viking! I want to do it.

      20 years is an awfully long time to survive suicidal depression, you are so lucky to have made it. I have a very successful friend who has lots of amalgams and suffers from that sort of depression also. But, convincing someone is another story. I’m not sure how you do that.

      You’re right also about not telling anyone. Doctors here are required to call 911 if you use the word ‘suicide’ – at least I was told that once I was trying to get an appointment sooner than three months with a gastroenterologist and tried to describe what I was experiencing…

      A very Merry Christmas to you and your family!

      1. Regarding your friend with the depressions, my experience is that it is very difficult convince most people. Normally, they have to find it out on their own. But if I wanted to try, I think that I would consider the following line of argument in this case:
        1.       This type of depression is quite specific and seems to be common among mercury toxic persons. As I mentioned, there is a lot by Cutler and others over on FDC that you can read.  
        2.       Rather than trying to convince him that mercury is for sure the reason for his issues, try to just present is as one possible reason.
        3.       If you can get him to accept that it is at least possible that mercury is to blame, the thing to point out is that this is something that he can actually fix without any major efforts. I would just focus on replacing the fillings and not even bring up chelation. When I took out my fillings, there was no protection but if you do it now at a competent dentist there is a very good chance that you get a lot better even without chelation. And if this happens, he would then probably be far more willing to hear about possible next steps.
        4.       I would try to make it easy for this person. This means that I would get involved in finding a suitable dentist before talking to him. The perfect solution would be somebody that comes highly recommended by the FDC members and that is located not where this person lives but close enough that he can travel there without too much hassle. Maybe 1-3 three hours away by car? This way, he would not run the risk of people starting to talk. Also, he can motivate his replacement just by saying that the old fillings looked bad and/or needed replacement anyway due to age. Best not to mention mercury when talking to other people….
        5.       I would be tempted to take all the fillings in one go, if that is possible. Or as few appointments as is possible. The reason for this is that mercury toxic people very often suffer from significant procrastinations, so if you actually get them to commit, you should try to get it all done ASAP or there is a real risk that they change their minds. So I would try to have that lined up with the dentist, i.e. no first half hour meeting just to look at things but rather get right down to taking out fillings. (As always, this is just my view. Others may argue for slower replacement)
        In line with Brad’s thinking, I think that this would be one way to “pay forward” and if this person is a good friend you may feel that you need to at least try. I have felt like this for some people close to me and I have tried but without any success. But it still felt like trying was the right thing to do.
        Best of luck, if you do try!

        1. Thanks for the good advice Viking, I will give it a try. Sorry to hear you haven’t succeeded with your friends. It is a tricky thing.

          And now, having recovered, I think you could be extremely persuasive speaking from personal experience.

  6. Eric, this is the best thing I’ve read in quite a while.  Thank you for sharing your experiences and feelings, the major obstacles and setbacks you’ve made it through.  They are a true testament to the sacrifice of this journey, a journey that only those of us on it can truly understand.  While the specifics between each of us vary, the feelings and weight of this burden are one. 

    I relate to so much of what you’ve written here, and know I will come back to it frequently to comfort myself.  Your assessment of Facebook is spot-on, and I wax and wane with my diligence in avoiding it as well.  It only fills me with bitterness and anger at the superficiality and self-indulgent, instantly gratifying lives so many are living.  I don’t need more pain.  This is the main reason why I don’t want to hear about all the ins and outs of everybody’s lives from family either; the less I know, the better. 

    I also love the Serenity Prayer, and love that you started praying.  I’d never thought of reading about survival…  But this, too, is entirely on point.  While not naked in the wilderness, foraging for food, our lives revolve entirely around meeting our most basic needs, just trying to survive.  I’m going to have to look up the books you mentioned.  Thanks.

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