Category: Peter’s Writings

When I was a kid, money was almost always tight.  With a large family to feed, there was rarely anything left for the kind of extravagant activities many people associate with a vacation.  As an alternative, we would go camping.  The highlight of most Summers was generally a trip up into the mountains to escape the heat and get away from the everyday grind.  Many of my favorite memories from this formative period in my life revolve around Alpine lakes and trails in North East Utah.

Unfortunately, work called me away from the Mountain West many years ago, and many of the places we’ve been don’t lend themselves to the kind of camping I find enjoyable.  I have nothing against KOAs and the like, but it just isn’t camping if I can hear or see direct evidence of civilization from where my tent is pitched.   Consequently, I’ve gotten out of the habit of camping.  However, I now find myself in New Mexico where the best of what’s available is off grid, and I feel an urge to get back to the pleasures I experienced as a kid.

Unfortunately, along the path of life I have been forced to stop and pick up a few extra unwanted passengers.  No, I’m not talking about my kids – they are beloved and welcome.  The unwanted passengers are things like a bad back and sleep apnea.  When it comes to outdoor recreation off-grid, these can be a major drag.  Being totally dependent on a machine to get adequate rest really complicates things if you want to get out away from the chaos of the world.

Over the last few months, I’ve had a few chances to experiment with ways to deal with at least the apnea.  Prior to heading out on my first test run, I did the obligatory Google search for ways to camp with a CPAP.  I discovered a couple of companies offering compact and battery powered machines that looked promising right up to the point where my insurance provider said they wouldn’t cover it.  Jumping in on my own to pay for a machine and enough battery to get through two nights at altitude was going to cost over $1000 – not to mention the weight and volume involved.  At this point I gave up the idea of returning to backpacking.  For the few nights a year I would use it, it simply wouldn’t be worth the cost.

Backpacking isn’t the only form of camping I like, so after further consideration I concluded that provided I can drive to wherever I plan to camp, a large (and incidentally very heavy) marine battery coupled with an inverter could provide the electricity I need for a few nights.  Even better, when coupled with a Harbor Freight solar panel kit it could theoretically run indefinitely.  This was a workable plan, especially given the fact that I already had a battery and inverter.

The first trial was a simple overnight trip with the youth group from church.  They were driving out Friday night, camping on BLM land for the evening, then going rock climbing the following morning.  Because it was only one night,  a failure in my method would be survivable even if I was extra grouchy the next day.   Upon arriving at the camp sight, I unpacked the battery, inverter, and the Darth Vader device (CPAP), ready for a solid night’s sleep out in the woods.

One of the more potent aspects of camping in the high desert is that it gets cold at night regardless of how hot it is during the day.  This night was no exception.  My sleeping bag did well enough keeping me warm, but I soon realized the CPAP had introduced a new complication: when running on battery, I can’t run the heated humidifier, and the thing is constantly blowing very cold air into my face.  That, in every respect, is a great way to stay awake.  This was a problem.

About three or four in the morning I managed a brief moment of clarity where I realized that the only warm air available was in my sleeping bag.  If I put the machine inside the bag I might get warmer air and be able to get at least an hour or so of sleep.  This worked better than I had anticipated, and I was able to fall nominally asleep until the very early wake up call broke the quiet in camp.  I felt I had found a workable solution.

Unfortunately there proved to be contingencies I hadn’t considered.  I just spent the last week off grid at scout camp and learned a few things.  First, the solar panels worked fantastically and the lights that came with them were a great convenience.  I also used the power to charge flashlights and two way radios.  It was a great convenience,  and I’m now converted to the luxuries of electrified camping.

The second, and incidentally most potent, lesson was to watch what I ate and be more careful in selecting menu items.  I made the mistake of eating a handful of dried apricots on the first day.  I love dried apricots, but they don’t love me.  In fact, they tend to abuse those around me in rather inconvenient ways.   However when I’m camping, I accept a certain degree of personal stink.  With that in mind consider that my CPAP sits inside my sleeping bag pulling air from around my body to blow into my face and keep my airway open.  If you’ve ever been the victim of a bed partner fumigating the sheets and venting them onto you, you MAY have a slight idea for how I passed the night.  Every escape of the horrid results of my culinary indiscretion was promptly collected by the CPAP and directed immediately towards my nose.  Oh, how I could smell it.  I could even taste it.  I felt like I could chew it.

At the end of the day the CPAP worked well and the trip was worth the effort, but I learned that beans, broccoli, cabbage, apricots, and all others of that gaseous lot are strictly off limits to all but the intrepid.

People who know me well know that I have a deep and enduring distrust of medical practitioners.  It doesn’t matter whether they  are conventional or not, I question the motives and quality of data behind the “scientific studies” and the actual knowledge of the practitioners.  In every case I’m aware of, there is a strong profit or other motivation to identify “conditions” for which there is a magic pill and convince you, or even better, your insurance company to pay for the magic potion indefinitely.  Several years ago I was dealing with some unexplained and fairly scary symptoms.  Over the course of about a year and a half, I bounced from specialist to specialist, each one prescribing their preferred magic potion for each symptom.  As time wore on, my collection of pills started to look like the kind you see in the hands of hypochondriac old men who need a small truck to haul all their stuff home from the pharmacy.  My symptoms didn’t improve either.  In fact, new ones started creeping in.

At one point, I was in a neurologist’s office and mentioned that my nose had been itching a lot for several weeks.  Consistent with established routine, he prescribed a magic pill.  However, this time he cautioned me to come see him first if I decided to quit taking it.  That caution, combined with growing unease with the number of medications I was on, prompted me to look closer at the information on this drug.  The results were frightening…  Side effects of use were fairly significant, but withdrawal looked terrible.  One of the more common results of quitting was suicide, and 100% of users experienced the feeling of burning knives stuck in their brains.  The problem this pill was supposed to help was an itchy nose…  I couldn’t find a single argument that would justify the risks and side effects just so my nose would quit tingling.  I decided to throw the prescription away.  At that point, I went through the rest of my stash and one by one considered the risk/benefit calculus, ultimately opting to get rid of all but one — including the heartburn and cholesterol pills I’d been taking for years.

Within a few months, the more frightening symptoms had subsided.  I still had residual issues, but those were there from the start and had never been addressed by all that the doctors had tried to do in the first place.  A few years later I was diagnosed with and treated for sleep apnea, ultimately resolving most of the remaining issues.   At this point, I’m convinced that most of the problem started out as a result of untreated sleep apnea or as side effects from the cholesterol and/or heartburn drugs.  Ever since then, I’ve been what the doctors would call a non-compliant patient on the rare occasions I end up in their office.  They tell me to take a drug, I ask why, how does it work, what are the risks, who did the research, what are the demonstrated benefits, how long has it been on the market, what have longer-term follow-up studies shown, why can’t my body take care of this itself, etc…  And then I decide if it’s worth the risks.  Generally, they either can’t answer those questions, won’t answer them in a form other than what you might tell a six year old, or the answers aren’t satisfactory.   As a result, I generally refuse to comply since the doctors rarely provide me with enough information to understand sufficiently.

Aside from a broadly broken body for which the only options are long-term pain medications I won’t take, all I’m left treating medically at this point is apnea and low T.  Courtesy of unfortunate circumstances, I’ve had to experiment with dropping treatment for sleep apnea — with profoundly disappointing results.  I am medically dependent on treatment, and the only alternative is highly invasive surgery.   I have accepted this fact, and fear power outages and going off​ grid as a result.  However, I’ve long been suspicious of the testosterone I’ve been on for over a decade now.

A few weeks ago, I decided to let the prescription expire and see what my body would do if I left it alone.  Today, I went in for lab work to see what happened, but I don’t think I need the results to know.  I feel awful.  I ache all over (including shooting pains in my chest and arms), have had a terrible headache for a week, have no energy or drive, am cranky beyond justification, am not sleeping well, and am having trouble concentrating among other things.  In stopping testosterone, I was trying to reduce the risk of negative side effects, and encountered substantial new ones.  The question remains as to whether or not the trade is worth it.

When I started testosterone over ten years ago, the belief was that it increased the odds of heart attack due to higher cholesterol and other factors.  This was on my mind when I decided to quit.  However, when I started to experience withdrawal symptoms, I started to do some research to find out how long I would have to live through them.  The results were disappointing.  For someone like me who’s been on testosterone for over a decade, the odds are that my endocrine system is so screwed up it will never recover even to the marginal level of function it had when I started treatment.  If it wasn’t hard-broke back then, it almost certainly is now.  Even if it will come back online, it’ll likely take years to get back to where I was when all this started — and I was miserable back then.  Two years of this is an unbearable prospect if the payoff in the end is only marginally better that the pain along the way.

There is a bright side though…  According to a 2009 cross sectional analysis of a large number of studies, the long term risks of testosterone replacement to clinically normal levels by transdermal or injection routes appear to be truly minimal, and are dwarfed by the positive benefits (including reduced mortality from heart disease).  So while I still would rather not take any medication, it seems this one is worth the cost.

Had I been more sceptical back when I first started talking it, I may have been able to successfully try alternative approaches including lifestyle and diet changes.  I might never have been in the position I’m in now.   I want to be rid of the leash tying me to a doctor’s office and pharmacy, but actions taken years ago with the best of intentions have resulted in a situation where I have to choose between long term health risks like osteoporosis, frailty and a quality of life so bad that suicide looks viable; and taking a medication for the rest of my life.

Unless my lab work comes back different from what I expect, and everything I’m experiencing is in my head, I’m pretty sure I’ll just suck it up and continue taking testosterone for the foreseeable future.   Even if the risks are greater than currently believed, I’d rather have a good 20 or 30 years followed by a heart attack than be miserable for 30-40 years.

Damn this sucks!  I’ll know for sure in a few days, but I’m pretty sure this is the last time I try to quit testosterone.