What Happened to Marc?

Last Updated: 2007-12-31

Not many are likely to be interested, but for those friends and readers who are wondering what the heck has kept me (Marc/Makosuke) down for all of 2006 in more detail than "very sick," here's the short and long of it. I'll update this periodically when things change.

Relatively Short Version

Imagine having a mild case of stomach flu, really bad laryngitis, morning sickness, and a very large pill stuck in your throat. All at once. For a year. I really wish I were exaggerating, but that's been my life since late 2005. It also took 21 doctors, 10 therapists, two trips to a fancy clinic, a university hospital, and several dozen scans, probes, samples, and tests to more or less figure out. Again, I am not exaggerating.

I also can't write an email in any detail, because it's like a laundry list of drug and weight loss spam terms.

I apparently have three rare disorders that flared up simultaneously and completely incapacitated me. I have a mild form of a relatively rare problem that causes the muscles in my throat to cramp up if anything provokes them and a predisposition to stomach problems. That was exacerbated by the onset of an extreme form of hypersensitivity with my entire digestive tract that basically makes the slightest irritation feel far worse than it should. Top that off with an unusual near-perpetual migraine without the head pain part (basically just affects my stomach).

For whatever reason, several of these decided to get much worse all at the same time, and during the process of attempting to diagnose and treat this condition without knowing what it actually was everything was made worse by stress and the fact that I have very, very bad reactions to acid reducers which are the stock treatment for throat and stomach discomfort (they cause the migraine thing, but only after a nice long delay). The upshot was that I could barely eat anything, couldn't speak, felt wretched, and gagged on my own throat every time I got out of bed.

End result: Took 5 months to partially diagnose and a total of 3 years and two trips to the Mayo Clinic to properly diagnose, I was essentially bedridden for over 4 months, partially mute for well over a year, appetite-free for 6 months, at least somewhat nauseous for the large majority of the past 16 months, about 40 pounds (18kg) leaner trying very hard not to starve (110 pounds for a 5'10" male is quite skinny), too weak to walk more than a block, and uncomfortable during nearly every waking moment since December 2005.

But, to quote the Plague Guy in Monty Python's Quest for the Holy Grail: "I'm not dead yet! I'm getting Better! I feel happy!"

The good news is that after finally figuring out more or less what's wrong (nobody can really say why, but probably a perfect storm of bad luck and negative feedback) there are some partially effective treatments that at least keep me from starving and out of bed most of the time.

I've been recovering very, very slowly, but as of the end of 2007 I can finally talk again (thank God for a good speech therapist), eating enough to more or less maintain a more or less healthy weight, and finally back to full time work. Still uncomfortable a lot of the time, and I eat like a 5 year old, but I'm alive and actually living.

Colorful Analogy

By way of analogy, picture having an invisible monkey, let's call him Gokuudo, on your back. Gokuudo is a mean monkey, and he's got his hands around your throat, squeezing gently, 24 hours a day, seven days a week, for months on end. After a while, he decides that if you do anything but lie quietly in bed he's going to squeeze harder and harder until you can't even swallow. He also really hates acid reducers, so when you try to take any of them, he starts kicking you in the stomach after a few days, and then proceeds to jam his grubby monkey hand in your mouth and gag you every time you try to eat. Also, when you try to talk, he jams his hand down your throat, grabs your tongue, and starts gagging you for a couple of days. Just in case you weren't already miserable enough, Gokuudo also makes sure that you feel absolutely stuffed after eating one small slice of bread, and his stink makes you feel sort of queasy all the time.

More Detail

For whatever reason, what has been an occasional annoyance turned into a crippling choking sensation that pretty much everything but laying in bed in a specific position (sitting, walking, talking, laying on my back, etc) made unbearable. As a result, I spent pretty much all but a few minutes a day between January and April 2006 laying in bed not doing much but staring at the wall. Yet again, I am not exaggerating. Being a rare disorder, it took months, a heap of tests, and a trip to a University Hospital specialist to diagnose, and there is unfortunately no cure per se--just therapy and hoping it'll improve on its own. (And in truth, they never did fully diagnose it--the only thing anybody is sure of is that everything looks fine.)

Then there's the whole business with my being in the 0.01% of people who have bizarre reactions to medications. In my case, all those fancy prescription acid reducers they advertise like crazy cause me to feel very, very sick after a few days, and it takes quite some time to wear off. Even more fun, good ol' over-the-counter Zantac seems to really hate me--for months I thought I was fine with it, until I realized that it was completely destroying my appetite, not lingering effects from the fancier prescription stuff.

By the time I figured that out, however, whatever brain chemistry it was messing with was so screwed up that it got sort of stuck. Toss in a predisposition to stomach problems that flared up along the line from the stress or a now-gone bug or whatever else, and this kicked off a combination of "permanent migraine without headache" (yes, it can apparently happen) that is something like being pregnant (constant nausea and just about any smell makes it worse) and a stomach that is physically ok but feels like an ulcer (for which the standard treatment is... acid reducers!). End result: I've been alternately nauseous, in moderate pain, appetite-less to the point of being unable to eat, or all of the above since before Halloween 2005.

To prevent starvation during the worst of it (second half of 2006) I got the majority of my nutrition through a tube embedded in my arm called a PICC line--it's used to pump a nice nutrient soup called TPN into a central artery every night while you sleep. Having an installed port with direct access to your heart feels very cyberpunk, but the injected junk slowly kills your liver and I much prefer the more traditional route of food intake.

Also, thanks to a nurse botching a routine procedure, I got to experience an air embolism firsthand. You know in the movies when they show the bad guy injecting air into an IV to kill somebody in the hospital? That actually wouldn't work--it takes way more than one syringe full of air to kill a human. That said, however much ended up in my bloodstream was enough to make it feel like I had inhaled liquid fire. I do not recommend it.

Thankfully, after getting so fed up with my insurance company and local doctors that I spent most of my life savings on two trips to the Mayo Clinic for testing and something resembling a proper diagnosis, I finally hit on a combination of drugs, herbs, therapies, and homeopathic remedies that helped enough so I could sustain myself. I am quite glad to have the thing out of my arm, though it's still a very long road to normal.

The Numbers

I've been keeping count: So far I have tried 15 different prescription drugs, 3 prescription-strength versions of over the counter drugs, 10 over the counter drugs, 14 herbal/homeopathic remedies, and I was also prescribed or given samples of 8 prescription drugs I didn't end up taking. Of the 28 drugs I tried, about six did me any good at all, only two without significant side effects. More than that have actively made the situation much worse.

I've fared considerably better on supplements and herbs; about 6 of the 14 have helped at least some, and only a copule had significant negative side effects.

By way of Western medicine I've seen 22 doctors total, 5 of whom were world-class: 13 specialists (four ENTs, two speech therapists, an endocrinologist, a neurologist, a headache specialist, three gastroenterologists, and a swallowing specialist), 2 general practitioners (not counting ER visits), 3 internists, 3 psychologists, and 1 psychiatrist. If you include ER and phone consultations, add 5 more. I've enjoyed 12 high-tech scans, 7 probes into every orrifice in my body, a dozen or so tests on tissue samples, and more blood tests than I can count. The detailed breakdown: 4 CT scans, 2 MRIs, 2 upper GI endoscopies, one colonoscopy, 2 radioactive stomach emptying studies, a couple of EKGs, one EEG, four X-rays, a lung function test, an ultrasound exam, a video stroboscopic throat exam and a half dozen more routine fiber optic/mirror based ones, a throat mannometry study, an electronic pH monitor, many biopsies, blood tests for everything from Valley Fever to cancer (that one cost as much as a used car), and tests on pretty much every bodily output but sweat (yes, even tears).

My therapy count thus far includes: Acupuncture, shiatsu, chiropracty, long-wavelength infrared therapy, deep relaxation therapy, hypnotherapy, counseling, psychotherapy, elevator music that's somehow supposed to help with morning sickness, more hypnotherapy, massage therapy, myofascial release, physical therapy, non-force chiropracty, LED therapy, craniosacral therapy, and some voodoo called tapping. Most help at least a little.

At this point, after a whole lot of prayer (that, acupuncture, Amitriptyline, and Glutamine are practically the only things so far that've helped significantly), getting something resembling a diagnosis ("Visceral Hypersensitivity," status migraine, and some kind of hypersensitive throat spasm thing), getting off of every medication I could, and a few games of Russian Roulette with chemicals that mess with your brain, I've finally hit on a combination of stuff that is doing more than just keeping me alive.

Oh, and incidentally, while you might fear going to the doctor and being told "You have [disease/disorder]," it's almost certainly an improvement over going weekly for months and being repeatedly told "I have no idea." while you slowly waste away. I also now have even less sympathy for morose goths and emo kids--if you feel physically ok, can walk, talk, and eat a sandwich at will, you really have very little to complain about. Everything else is just icing on the cake. Pray you never have to learn the hard way just how wonderful all the simple stuff is.