Wednesday, May 25, 2011

When a strong mans body betrays him

This is going to be a very personal, somewhat messy, somewhat confessional story, about my health, and my life.

Up until today, I haven't actually spoken about what I weigh, or weighed at peak; nor have  I set this whole story down in one place.

This is the story of a man who was used to being physically powerful, and in complete control of his body; only to have his body turn around and show him just how little power or control he has.

I started puberty young; with noticeable changes starting when I was about 9 years old...

...but I was always an oddly overdevloped kid. I have a picture of me at 7 or 8, with a defined six pack, biceps and triceps; when most kids have no muscle tone or definition at all. I also developed gynocomastia in puberty, so I always had some excess male breast tissue, even when I was at my lowest bodyfat levels.

I started lifting weights at age 11; by which time I was 5'6" (I passed my mothers 5'3" when I was 10).

I was always a big, strong kid; and as I was growing up I knew I wanted to play football and wrestle. Also, I was started down the road with martial arts very young, with Jiu Jitsu.

I was actually too big for pop warner football. For each age bracket, I was over the maximum weight... I was also pretty much always the tallest kid in my age group, by two to four inches in any given grade.

I did play youth soccer though. I had a lot of penalties called against me just because I was so big, the other kids would bounce off me at the slightest impact.

I stopped growing at age 13, at 6'2" tall and 265lbs, and under 12% bodyfat. I had a 34" waist, a 20" neck, and a 50" chest, with fully muscular thighs at 28" and biceps at 19".

Remember, I was 13; and near as I could tell had finished puberty. I actually got stretch marks, I grew so fast, and I lifted so much.

Even though I had very low bodyfat, I always had a little pudge over the still defined and very strong abs and chest (yay gynocomastia). I could never be a bodybuilder, because that never goes away, no matter how much weight you lose; and because of my genetics and endocrine system, whenever I did gain fat, I gained it in my central trunk (a pattern that would repeat later).

The theory my endocrinology team are currently operating under, is that I produced abnormally high levels of testosterone, thyroid hormones, and HGH as a kid; in a mild form of gigantism. That would explain my abnormal size, energy, and strength; as well as why those systems all became problematic as I got older.

Because of where my birthday fell, I was always the youngest kid in class as well (I would have been even younger, but my mother wouldn't let me skip grades; which the schools wanted me to do).

I was a varsity football player, and varsity wrestler, as a 13 year old freshman.

Over the course of high school I went up to 285lbs and under 12% bodyfat; and made sure I stayed there, because in my region, you couldn't compete in high school athletics if you weighed over 285.

At 16, I had a 36" waist, 20" neck, 52" chest, fully muscular thighs at 32" and fully muscular calves and biceps both at 22".

I was never a bodybuilder, I was a powerlifter. Bodybuilder are after symmetry, form, and size. I didn't care how big got, or what my muscles looked like, I wanted strength, and power, and explosion.

I was so big, I had to get NFL football pads, not high school or college pads (in those days, college players were usually a lot smaller than today). I also wore a size 8 hat, which meant I had to get a special helmet (the largest normal size at the time was 7-1/2).

At my peak of fitness and exercise, I would work out up to 2 hours in the morning before school (30 minutes on the bike, 30 minutes of calisthenics and stretching, a 30 minute light circuit, and 30 minutes of heavy lifting), followed by a five mile bike ride to school, then an hour of workouts in school every day during football and wrestling season (mixed weights, calisthenics, and sports specific exercises). Then football or wrestling practice after school for two to three hours. Then another 5 mile bike ride back to the gym, and a couple hours in the gym or in the dojo (depending on the day), before heading home, or to one of the part time jobs I had during my teen years.

I ate over 7000 calories a day just to be able to maintain weight; sometimes as high as 10,000 calories.

That was five days a week, every week (well... except the days I was skipping school, which I did a lot; or when I'd be working right after school or right after football practice) from two-a-days in late August through the end of wrestling season (March).

Outside of the athletic seasons I spent more time in the dojo and the gym, such that I was still working out as much as four hours a day; and I would work more.

I would also work summers, evenings and weekends at various part time jobs; including furniture mover, cabinet maker and furniture restorer (for my uncle Carl. I learned to love wood, and real craftsmanship in that job; as well as a lot of very useful skills), crew on a moving van, warehouse stocker... lots of different things. Eventually I started doing professional computer consulting work, and I even started my own company.

I never studied a minute as a teenager. I didn't need to. I aced every test, every report or paper... I used to make a deal with my teachers: they'd give me all the work for the semester in advance, and I'd turn it all in, completed and almost always A material in the first few weeks of the semester, and they'd leave me to my own devices.

When I finally got home, half the time I'd read until between 2 and 4am, then get back up at 5:30 to get back out to the gym.

I had really bad insomnia when I was a teenager. Sometimes I'd go a couple days without sleeping; then I'd collapse and sleep for 16 or 18 hours. I took my SATs after having not slept for more than three days (the test was on the fourth day), and I still got 1540 (this was pre-calculator and pre their "rescaling" of scoring. By todays scoring it would be a perfect score). I went home after the test and collapsed for 28 hours.

All through college and the Air Force, I worked out less (though I ran more... involuntarily. I hate running, but it was required). I generally maintained a weight of 265-285 and under 12-14% bodyfat (except losing weight radically during a couple of training courses. I went down to 245 at one point, and 8% bodyfat, and I looked like a muscular skeleton); up until severely injuring my knees.

I dislocated my patellas, but the dispensary never even x-rayed my knees. I was only treated for knee sprains, and the patellas healed in the dislocated position with fluid sacs under them.

Unfortunately, I didn't know that at the time.

At the time, I was eating 3,000 to 5,000 calories per day, just to maintain weight.

After my knee injuries I had difficulty exercising as much as I had before. I could barely run at all anymore, only running the minimum required for PT and the PFT. My weight fluctuated between 285 and 305... and I had to work hard at it. My bodyfat also climbed up as high as 18%. My waist went up to 42"; but I still had a 21" neck, and a 52" chest.

At this point I was pudgy, but still very strong, and not actually FAT.

After I went into the reserves, I was walking down 2nd avenue in Manhattan one day, when I swear to god, I thought I was shot in my left knee. I fell down hard, and was screaming in the middle of the sidewalk.

After a minute, I figured out I hadn't been shot, but my knee hurt worse than it had ever hurt before.

I managed to drag myself up and into a cab and went to the nearest hospital, where they discovered the issue with my patellas.

The Doc told me that I would likely be in a wheel chair for six months, on crutches for at least another year if not the rest of my life, and then at best walk with a cane the rest of my life. That was at best. They also told me I needed immediate knee replacements.

I told him to go fuck himself. The only time I was in a wheelchair was from the bed to the door; I was on crutches for six weeks, and used a cane for six months. After two surgeries and a year of rehab, I was walking without a cane; and I was working out again. Six months after that, I was in Ireland, playing semi-pro football (yes, because I am a fucking moron).

During my rehab, my weight went up to 345, and that became my "normal" for the next few years. I fluctuated around 325 to 345; including the weight I played football in Ireland at. My bodyfat climbed over 20%, sometimes as high as 22% or 23%, and my waist went up to 46". However, at the time I was still working out basically every day, or every other day (as my work schedule allowed); and I was still fit enough to ride the bike on an intense program for 60 minutes (which I would do every day when I was trying to control my weight).

During this period I also started to suffer from arthritis, in my ankles, toes, knees, fingers, and hands. I went through, and am still going through, a lot of pain. I also started having back issues. It made the exercise difficult.

After a while, there were weeks at a time when I simply couldn't do it, the pain was too bad... but I still kept my weight to between 325 and 345... even once, seven years ago, getting down to 295.

... until about 5 years ago (I guess almost six years ago now... right about the time I met my wife)

At least six years ago, I developed multi-endocrine cancer (though we didn't know what it was until a few months ago; I probably developed it during my early to mid 20s, and the symptoms became apparent six years ago), which caused my bodies hormonal regulation to go insane, and I started gaining weight. I also began to have too much pain and not enough energy, to work out regularly.

Gross, I gained over 700lbs in five years.

No, that's not a joke or an exaggeration.


I said gross... However, at various times I was able to lose 60lbs here, 70lbs there, 40 lbs there etc... etc... I even managed to get down to 295 again at one point through overexercise and literal starvation; but that caused severe damage to my health, and I ended up sick for several months.

And that's just counting the big swings of 40lbs or more. I could be up or down 10lbs in a few days, 20lbs in a weeks, very easily; and I was, constantly.

No mater what I did, how much I dieted and exercised, I kept gaining weight. At one point I was eating so little I couldn't maintain my body temperature control properly, and I would just fall asleep for no reason; and I was still just barely losing any weight.

So we get to where we are now...

Last December I hit my peak weight of 497lbs; a net gain from my lowest point in the last five years, of 202lbs.

I suffer from what is called morbid central trunk obesity. Most of my body is "normal"(big, because I'm a big man with a lot of muscle, but not grossly fat), but my stomach and chest, hips, and back, carry almost all the excess bodyfat (with a little spillover into my thighs). My face, neck, arms, and lower legs are of a man who is maybe 40 or 50lbs overweight; my torso is a man who is (or was at peak) 200lbs overwight.

Because of my very large muscle mass, I don't look like I weigh what I do (thank god). Look at me next to a guy at my height who weighs 350, and I probably look about as "fat" as him... only I'm about 100lbs heavier.

As of December, my lean bodymass was somewhere around 200lbs, my bodyfat was somewhere around 50%, but because of the edema it is difficult to be precise. Also, we believe that anywhere from 60-90lbs of that 497lbs was actually excess dependent fluid retention due to edema (that's over and above normal water weight)

When I first went on diuretcs, I immediately lost almost 40 lbs within a couple of days. After a couple of weeks, the diuretics became less effective and I gained a fair bit back. That stabilized and I stayed about 20lbs down from peak.

Then they found the big tumor in my neck. Almost 4" long, more than 3" high and more than 3" deep... and impinging on my airway.

I have what is apparently multi-endocrine neoplasia, with a primary fibroid encased follicular neoplasm on my thyroid, exhibiting complex mixed fibroid and follicular structure, poorly differentiated with grossly enlarged malformed nucleii; and secondary microlesions in my pituitary and adrenal glands.

It's extremely rare, and extremely strange, and very difficult to diagnose or understand or localize; because one of the major characteristics of the disease, is it knocks your endocrine system completely out of control, and it gives you symptoms of other diseases you don't have.

The good news, is that it's operable.

Unfortunately, my doctors decided they couldn't operate yet, because I have too much weight in my central trunk bearing on my chest wall, and because the tumor is impinging on my airway (in fact now that I've lost so much water in my neck, it's visibly deflected my airway over an inch). This causes excessive risk of seizure or respiratory failure when operating near my airway.

To get down enough to have surgery (under 390lbs minimum, but they would prefer I reach a stable weight of under 360lbs) I then went on a medically supervised starvation diet of appx. 1200 calories per day (plus one cheater day per week where I eat whatever I want).

Just for comparison, that's about the same as 110lb woman needs to eat to maintain weight. It's also about 3000 calories per day less than my body SHOULD need to maintain weight, but because my endocrine system is so screwed up, it's actually only about 1000 calories per day less... (Yes, I'm burning about 2000 calories per day less than I should, that's how screwed up my body is). The goal being to lose 60-100lbs by the end of 2011.

Also they put me back on hormone supplementation, and vitamin and electrolyte supplementation; because the diet and medication make me SEVERELY deficient in various nutrients.

Between diet, exercise (not much yet unfortunately), treatment for the hormones, treatment for the electrolyte imbalances and vitamin deficiencies, and going on the strongest course of prescription diuretics they can prescribe (I'm on a max dose of two different diuretics and it just barely keeps up with the edema. My weight can very as much as 16lbs in a single day), I have managed to lose about 60lbs since December.

As of this morning, I scaled out at 434lbs. Subtracting the 12-16lbs of edema related swelling over the minimum that I'm carrying today, I weigh about 418-422lbs. The lowest I have scaled out at is 430lbs even; and on that day I know I was carrying at least 10lbs above my minimum water retention.

After a while, I can kind of get a feel for where I am with the edema in terms of water retention above the minimum (the minimum is still probably 16-24lbs extra over "no edema", it's just the minimum I can get down to with diuretics, diet, and fluid restriction); based on how swollen my fingers, ankles, feet, and lower calves are, and how my joints feel.

At around 10-12lbs over the minimum I can't take my wedding ring off, start experiencing peripheral neuropathy and parasthesia in my extremities (tingling, shooting pains, burning sensation, "pins and needles", weakness, and numbness).

At 12-16lbs the peripheral neuropathy starts to get bad, and I experience frequent parasthesia.

At 24lbs over I have a problem putting on shoes, and the neuropathy and parasthesia become extremely painful and disturbing.

At 30lbs over I can't put on shoes at all, in fact anything touching my feet, ankles, or lower calves causes pain (almost like gout); the numbness extends up to my ankles and wrists and sharp shooting pains up to my knees and elbows, and I have nearly constant parasthesia.

Because of the edema, my weight can vary tremendously. As I said above as much as 16lbs in a single day (that's from morning to bedtime, not overnight); and I've seen as much as a 48lb difference in 3 days.

I think my true weight, as of today, if I had no edema, just a normal amount of water; would be between 400 and 410lbs. With minimum edema, I think I'm, something like 416-426lbs... so I think my "minimum" edema is about 16lbs or two gallons of water.

And remember, this variability, and that "minimum" is even on a restricted diet, with the diuretics.

I also experience dumping syndrome, almost every day (look it up. I don't want to describe it because it's nasty and disgusting and it sucks). Frequent gastric reflux. Wild fluctations in blood pressure from very low to dangerously high. Nearly constant intestinal disturbances, cramping, and bleeding. Massive vitamin and electrolyte deficiencies for which I take literally dozens of pills a day.

I've developed sleep Apnea. At minimum edema, I don't have a problem, but the more water I retain, the worse it gets.

At my worst, I experience "respiratory disturbances" 40-60+ times per hour, for 10-40 seconds each episode, with as little as 10 seconds between episodes, and as much as 4 minutes. This is reducing my O2 saturation down to as low as 67%, with sats below 80% at least 40% of the time and below 70% at least 5% of the time. 94-99% O2 saturation is normal by the way. 40-60+ times per hour, for 10-40 seconds each episode, with as little as 10 seconds between episodes, and as much as 4 minutes. This is reducing my O2 saturation down to as low as 67%, with sats below 80% at least 40% of the time and below 70% at least 5% of the time. 94-99% O2 saturation is normal by the way, and SaO2 as low as 67% is actually into hypoxia territory, and can cause brain damage if it stays that low for prolonged periods.

Amazingly enough, I'm not diabetic or even pre-diabetic. My A1C is normal, and I am not insulin resistant; though I do experience blood sugar spiking after meals with more than my usual amount of carbs. My heart is dead healthy. I had a full cardiac study done a few months ago and I'm great. My cholesterol is normal, though my HDL/LDL balance could be better.

In fact, it was actually because those factors were not where a morbidly obese person "should" be (when you're 200lbs overweight you ARE diabetich with high blood pressure, basically 100% of the time), that finally managed to convince the doctors that I was fat because I was sick, I wasn't sick because I was fat.

Some days, I can barely walk, or even get out of bed. My hand eye coordination is much worse than it used to be. My muscles twitch a lot, for no apparent reason. Some days, even though it takes me hours to fall asleep, I simply can't stay awake. I'll fall asleep suddenly, in the middle of the day while sitting at my desk; or while driving I will have an overwhelming need to fall asleep, and I have to pull over so I don't fall asleep at the wheel... and then 15 or 20 minutes later I'm completely fine.

Some days I have no energy whatsoever, and can barely get up and... just live...

... and some days I'm fine.

I've lost at least 30 IQ points on the bad days; maybe 50 on the really bad days. I'm not as alert, I don't notice as much. I forget things a lot. I sometimes suffer from aphasia. I can't concentrate as well... or sometimes, at all. Sometimes I can't read more than a page or two at a time, or I get stuck reading the same page over and over again but I can't absorb it.

... and some days I'm fine.

Most days, I find it very hard to write. I can't focus enough. I can't pay attention long enough. I can't get motivated enough. When I read what I'm writing, I hate it because it doesn't have any life to it. It doesn't feel like me.

It's hurt my work performance badly, and cost me an enormous amount of money (never mind the medical bills, which at this point have gone over $80,000, even with insurance). I'll just leave that at that.

My endocrinologist believes, based on symptomology, that I've developed some type of microtumors or microlesions in my LHAP system. They can't see them (or rather, can't be sure that's what they're seeing) on scans because they're so small (smaller than a grain of sand), but there is nothing else that explains what's going wrong... and they can't treat them. At least not yet. They might be able to later, after I lose a lot of weight, and get all my symptoms under control.They may just go away by themselves. They may not even exist and the problem is something else entirely they haven't found yet. We don't know.

The theory is that the microlesions are caused by the major tumor; so once the major tumor is removed, the microlesions will eventually go away on their own. When they do, my endocrine function may go back to relatively normal (excepting the thyroid which they will remove, and I'll be on thyroid medication the rest of my life), or it may not, and I may need to take additional hormone supplementation or hormone suppression (in case they become hyperactive when the cancer stops suppressing them) for the rest of my life.

I developed adrenal and pituitary insufficiencies, and my testosterone levels fell through the floor. A normal level for a guy my age would be somewhere in the 600-900mcg/dl. Mine collapsed down to between 90 and 120. I'm now taking 400mg every two weeks via intramuscular shot, and it's only bringing my levels up to around 300mcg/dl; but any higher dosage would have extremely negative side effects (like baldness, acne, excessive body hair growth, testicular atrophy, gum disease, an increased tendency towards glaucoma and macular degeneration, excess cholesterol buildup, high blood pressure, blood pressure spiking etc...)

Without testosterone that low, it's very difficult to develop or maintain muscle tone, and you retain excess bodyfat rather than making muscle tissue. Energy, focus, drive, passion... you just don't have it.

My libido goes from its normal very high levels (I've always had a ridiculously high sex drive) to almost nothing for days at a time, sometimes a week or more, then randomly back to very high... and that's WITHOUT the testosterone injections.

The injections cause their OWN huge peaks and valleys, and they have lovely side effects like increased inflammation, acne, sleeplessness, restlessness, muscle pain, excess hair growth, and they make the edema and blood pressure fluctuations worse... yeah, fun.

It's all due to the endocrine crap.

By the by, as of today, my biceps are still 22", but no longer fully muscular... they'd be about 19" if fully muscular today; and I can still curl 75lbs per arm until I feel like stopping, over 100lbs per arm for 5 reps; and over 200lbs together, at least once.

A couple months ago, just to prove a point, I curled a friend of mine who weighed 220.

I can still easily pick up a 250lb person and carry them around with no problem (and have done so recently).

I also have fully muscular 21" calves when the edema isn't covering them with 1/2" or more of water, 15" forearms, and a 22" mostly muscular neck (there's about an inch and a bit of fat and edema there).

Unfortunately, as big as my thighs are (34") they're about half fat. My waist has exploded to 64" (and that's actually a reduction from peak), and my chest to 60" (also a reduction from peak).

I can still dead lift over 500lbs (at least as of a few months ago. I had to pick up the hitch of a trailer with a tongue weight of over 550lbs and had no problem doing it. I've also picked up 400lb appliances and picked one end of an 800lb piano a couple feet up off the floor); but I can't squat at all except with a machine (I am unstable and uncoordinated, with severely atrophied stabilizing muscles),  and even then I'm down to under 400lbs for a single rep, under 350 for 5 reps, and under 300 for ten. My bench press is down to about 250lbs for a single rep, and 220 for ten reps.

And actually, all that was from last year... I'm certainly worse now.

By most standards, I'm still a very strong man... but I haven't been this weak since I was 11 years old.

And what's left of that strength, it lasts for minutes, not hours or days like it used to; like it should.

I haven't talked about these details, because of ego... pride... shame... I don't know what to call it; except that I didn't want to talk about just how bad it had become. How much weight I had gained. How much capability I had lost.

The worst part is, I know I didn't have control over this. I was eating normally and exercising, and this still happened. I was nearly starving and exercising, and this still happened. I've been going to doctors about this for years and no-one has been able to figure anything out... hell they didn't even find a tumor in MY NECK the size of a GOD DAMNED POTATO until 3 months ago.

In my NECK.

There isn't a damn thing I could have done different to make this any better... and perversely, that actually makes it worse.

I don't give a damn about what others think, I never have... but think about what I think, what I feel, looking in the mirror and KNOWING that's not me... that's not what I'm supposed to look like.

Hell, I know for a fact that the various people who dislike me around the internet will use this as ammo "oh look, he's a disgusting fat slob" etc... etc... I don't give a damn.

What pisses me off, is that I can't carry the groceries in from the damn car... Or most of the time even walk around the store with my wife to buy them in the first place. I can't run around with the kids (thank god, swimming still works for me). I can't ride a bike. I can't sail. I can't do a goddamned thing but sit.

That's what bugs me.

Recently I've had a number of people ask me things like "how can you stand it" or "how do you deal with it" or "how do you go on, how does it not crush you"...

Simple answer:

What... like there's another option?