Something many people don't seem to understand about cancer in general, and my specific kind of cancer in particular...
When you have surgery to remove cancerous lymph nodes... it doesn't CURE the cancer. You still have cancer, it's just in remission, because you don't have enough actively malignant cancer cells to detect a large mass.
Even when they say you are "cancer free", it doesn't actually mean you're cancer free, it just means there are no detectable large masses of cancerous tissue.
... And you PRAY most fervently, that there are no large undetected masses... because there easily can be... and that you have a long while before the cancer grows enough again to be a threat to your life.
You have to understand... once cancer is in your lymphatic system, small clumps of cancer cells circulate through your entire body. You just have to hope and pray they don't implant and grow... or at least they won't for as long a time as possible...
... Because, barring some kind of miracle, lymphocytic cancer ALWAYS comes back... it's just a question of how long until it does.
My cancer is currently in remission... at least I hope so, because I haven't had a post surgical scan, or my six month scan. So there very well could be more large malignant masses growing in me right now... I don't have the money to get the tests necessary to know whether I do or not.
...But the odds are about 75% that it will be back within two years. About 85% within 5. About 95% within 10, and about 99.6% within 15.
... And my own personal history proves that out...
I had my first cancer surgery in July 2012.
We detected the lymphocytic metastasis in November of 2015.. three years... and had surgery in March of 2016, when they got "all the cancer"... and at they time, they absolutely thought they had.
Six months later, in October of 2016, I had approximately twice as many cancerous nodes as they had taken out in March... and at the time, it looked liked they had got all the cancer... again...
21 months after that, I had approximately double THAT amount of cancerous lymph nods and infiltrated tissue removed.
It's been a little less than 8 months... There's a very good chance I have more cancer right now... but I won't know until I can raise enough money... or work enough... to get the tests I need.
So... yeah... That...
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Saturday, March 09, 2019
Saturday, June 23, 2018
Trying to Survive
7 days ago, my wife of almost 13 years, Melody, left me... For many reasons.
I dont blame her for going... She told me she couldnt take what our life had become a long time ago, and I just thought... a lot of things... and I was wrong. I put her through hell, just trying my best to live through this cancer and everything else... and I screwed up a lot ifnthings... and I dont blame her for leaving at all... and now, I just want her to be safe and happy.
We were about to lose our home... we've lost it now... again for various reasons.
I know that she is safe, and she has the dogs and cats and they're OK and safe and good... and I hope Mel can have a better, happier life without me, and without the problems that have dragged us down for years.
The boy is safe and healthy and doing well, and has been since November when the state of New Hampshire decided that Mel couldnt take care of both our autistic son, and my crippled, dying, damn near bedridden ass... I am physically unable to take care of him, and he is doing very well with my aunt so he's the best off he can be right now.
At this point, I have no home, very little money, I'm just trying to survive.... For my son.
I have no home. I am currently in a hotel, and looking for a place to live that friends and family can help me pay for until I recover from the cancer surgery and can start working again.
I have cancer surgery scheduled for July 23rd, but I'm going to lose my insurance at the end of June unless I can pay $1900 before the 30th. I have applied for Medicaid and disability and every other thing... but my surgeon and hospital are in another state, and wont pay for them without a special exception, which I dont know if I will be able to get before I lose my surgical date. My cancer is advancing and will become inoperable soon. They also recently found a large mass in my skull, but the neurologist thinks its benign and can be dealt with later.
Thank you to everyone who has helped support our family... if you want to help me survive and recover, so I can be with my son, and help raise him and give him the best life possible... I'm accepting donations via PayPal, at chris@chrisbyrne.com
Monday, October 15, 2012
Lessons From the Well Spouse - Part 2, Post-Crisis Exhaustion
Or, alternatively, if things are getting better why do I feel so horrible?
As I explained in the previous Well Spouse post, there are certain challenges in being married to someone with an acute or chronic illness of any type.
I realize it's odd to jump from pre-crisis to post-crisis but I'm currently dealing with this issue that no one seems to talk about. No one warns you about how bad you'll feel after things start to get better.
Everyone has their own definition of "getting better" as well as their own ideas about what constitutes the end of the crisis.
For me, my criteria ended up being two-fold: 1. that Chris's symptoms start improving and he starts acting more like himself and 2. everything in the future treatment plan be something we've already gone through and therefore know how to handle. Since the future treatment plan is "nuke it from orbit again if necessary" I KNOW I can handle what comes next because we've already gone through it once. As for Chris acting more like himself, his ambition is starting to fully reappear and some of his most bothersome symptoms are on the wane.
You would think that being out of the crisis would lead to elation. Well, yes of course I'm thrilled.
I'm also completely exhausted. I'm not talking "need more rest" exhausted either. Chronic exhaustion or what is now called mental or emotional fatigue.
I hate those terms. Mental and emotional fatigue doesn't really describe what I'm going through. Chronic exhaustion of the "have to drag myself out of bed" variety is far more accurate. Some would mistake it for a major depressive episode. It's not. I still enjoy things, I have ambition and motivation. I'm very irritated at my body's unwillingness to follow through on my ambition and motivation and my brain's complete fatigue.
So why chronic exhaustion, and why now?
I think it's two-fold. One part is simply the effects of being in crisis mode for too long. If you've spent a long time (in my case years) grappling with a problem and pushing yourself to the emotional and mental limit, you're going to be exhausted. At some point the pressure lifts and your mind and body say, "yay, now we can rest and the world won't end!" No, you don't get a say in the matter.
The second part is re-adjusting to life with less stress. Once the huge cloud of medical crisis lifts there's considerably less stress to deal with. If the crisis went on for a long time you naturally adjusted to that stress level. With the crisis gone there's not near as much stimulus or adrenaline or pressure. Life becomes somewhat boring. It's really not boring at all, you just need to adjust to your new circumstances.
What this leaves you with is systemic exhaustion combined with no compelling reason to not sleep for 12 hours a day.
So while you'd love to be out celebrating the good news, the likelihood is all you want to do is sleep and rest. That's fair. You need time to recover from everything you've done during the crisis.
I think I'm finally somewhat rested, renewed, and adjusted. It took a fairly long time (4 weeks) but I'm almost back up to a reasonable energy level for a pregnant woman. I'm not very happy with certain things I've let slide but now I can tackle what needs to be done.
I'm very, very glad to be on the upswing at last.
Mel
As I explained in the previous Well Spouse post, there are certain challenges in being married to someone with an acute or chronic illness of any type.
I realize it's odd to jump from pre-crisis to post-crisis but I'm currently dealing with this issue that no one seems to talk about. No one warns you about how bad you'll feel after things start to get better.
Everyone has their own definition of "getting better" as well as their own ideas about what constitutes the end of the crisis.
For me, my criteria ended up being two-fold: 1. that Chris's symptoms start improving and he starts acting more like himself and 2. everything in the future treatment plan be something we've already gone through and therefore know how to handle. Since the future treatment plan is "nuke it from orbit again if necessary" I KNOW I can handle what comes next because we've already gone through it once. As for Chris acting more like himself, his ambition is starting to fully reappear and some of his most bothersome symptoms are on the wane.
You would think that being out of the crisis would lead to elation. Well, yes of course I'm thrilled.
I'm also completely exhausted. I'm not talking "need more rest" exhausted either. Chronic exhaustion or what is now called mental or emotional fatigue.
I hate those terms. Mental and emotional fatigue doesn't really describe what I'm going through. Chronic exhaustion of the "have to drag myself out of bed" variety is far more accurate. Some would mistake it for a major depressive episode. It's not. I still enjoy things, I have ambition and motivation. I'm very irritated at my body's unwillingness to follow through on my ambition and motivation and my brain's complete fatigue.
So why chronic exhaustion, and why now?
I think it's two-fold. One part is simply the effects of being in crisis mode for too long. If you've spent a long time (in my case years) grappling with a problem and pushing yourself to the emotional and mental limit, you're going to be exhausted. At some point the pressure lifts and your mind and body say, "yay, now we can rest and the world won't end!" No, you don't get a say in the matter.
The second part is re-adjusting to life with less stress. Once the huge cloud of medical crisis lifts there's considerably less stress to deal with. If the crisis went on for a long time you naturally adjusted to that stress level. With the crisis gone there's not near as much stimulus or adrenaline or pressure. Life becomes somewhat boring. It's really not boring at all, you just need to adjust to your new circumstances.
What this leaves you with is systemic exhaustion combined with no compelling reason to not sleep for 12 hours a day.
So while you'd love to be out celebrating the good news, the likelihood is all you want to do is sleep and rest. That's fair. You need time to recover from everything you've done during the crisis.
I think I'm finally somewhat rested, renewed, and adjusted. It took a fairly long time (4 weeks) but I'm almost back up to a reasonable energy level for a pregnant woman. I'm not very happy with certain things I've let slide but now I can tackle what needs to be done.
I'm very, very glad to be on the upswing at last.
Mel
Saturday, September 15, 2012
Using Big Guns to Hunt Radioactive Zebra
Today I attempted to explain to an old friend exactly why Chris experiencing extreme side effects from the radioactive iodine is a GOOD thing. It's counterintuitive and the conversation reminded me of something we've yet to address on this blog.
They usually wait six to eight weeks, just to make sure; but the doc understood how serious we were about nuking this bastard from orbit, and exactly one month after surgery Chris received his first RAI treatment. The minimum amount of time after surgery, the maximum dosage allowed for all but the most extreme life-threatening cases. We prepped to the max; not only did Chris adhere to a low-iodine diet, he went way past low-iodine requirements and made his body as desperate for iodine as possible.
We are extremely blessed in our choice of doctors. Our care team is simply incredible.
That's not an accident though. We spent years going through doctors, trying to find someone who understood what Chris was experiencing. Finding our care team was the result of perseverance and patience.
There's a saying in the medical community: "If you hear hoofbeats, think horses, not zebras."
Chris is a zebra. Currently he's a radioactive zebra.
If someone could make me a design of a radioactive zebra I'd have a shop up on Zazzle and be selling radioactive zebra t-shirts by the end of the day.
But anyway...
Finding doctors who understood that they might be looking for a zebra can be incredibly difficult. Our breakthrough came in getting a very young and fresh family doc, convincing him that he was out of his depth, and getting him to send us to specialists. Then we just didn't quit until we got to the right specialist.
This is nothing new to me. In 2004 my youngest brother Tim, 30 years old at the time, suffered complete kidney failure. Most of the time dialysis patients are older, diabetic, and non-compliant. Tim is younger, has no other medical issues, and is incredibly OCD. Dialysis diets are written for the non-compliant. Tim might be the only dialysis patient in the country that almost stopped his heart from lack of potassium in his diet. Finding him a doctor who understood him took time and patience.
Finding a doctor who understands Chris ended up being incredibly difficult as well.
Chris got up to 300lbs overweight at one point. Most people that are that overweight 1. are diabetic, 2. have blood pressure issues, 3. lie to their doctors about their diet and 4. are past middle age. Chris is 36, normal blood sugar, normal blood pressure, and tells the doctors the truth. Finding a doc who understood all of that took some doing.
What finally did it for us was dealing with a new physician's assistant doing the intake at the group endocrinology practice. He didn't believe Chris either but he had a list of things he "had to do"in order to make the head of the practice happy.
The PA is the one who found the tumor.
Suddenly Chris got "upgraded" as it were. His case reached the ears of the head of the endocrinology practice, a man who graduated from medical school at Yale in 1969. He's one of the most respected endocrinology and metabolism researchers in the country.
This doc HAD to have Chris as his patient.
When we first met him we didn't jump through all the hoops or spend forever listing his symptoms to unbelieving ears. He came fully ready to believe that Chris was a zebra.
When Chris said "Endocrinology is weird and no-one understands it" the doc said, "Yeah, that's why I like it."
I'm fully convinced our endocrinologist's next research paper will heavily feature Chris.
Funny thing about doctors who "get it" and like odd cases; they know other doctors who feel the same way. That's how Chris ended up with an orthopedist who saw a man in his mid-30's with knee pain and treated him according to his age. Which meant Chris ended up with drugs that worked, not drugs that are safe for the vast majority of orthopedic patients.
Between these two doctors and their willingness to treat Chris as a zebra, they quite honestly saved his life. They reduced his symptoms, reduced his pain, and reduced his weight.
Most doctors are afraid to "bring out the big guns" as it were. Most doctors are afraid of lawsuits, malpractice claims, and non-compliant patients accidentally killing themselves. These doctors dived into Chris's case, took a good look at both of us, determined that we're educated and intelligent patients, and treated us accordingly. They brought out the big guns because we could handle it.
Which brings us to awesome doc number 3, our second (and final) surgeon.
There are no words for how much I love this surgeon. Mostly because of what he did the day of the surgery.
We'd met him at the consult and he'd gotten his measure of us. He knew who we were, he figured us out.
Right before the surgery he came to see us in the prep area. There he gave us the option.
"If I go in there and think that a lobe of the thyroid can be saved, do you want me to save it? That would reduce your chances of damage to the parathyroids and limit your risk. If I go in and I don't think it looks malignant, I can just take out the tumor and leave the rest alone, it's up to you."
We told him to take the whole thing, that we were pretty sure it was malignant (given the growth rate), and that we didn't want him going under the knife again if the pathology comes back with bad news. Also, with me being pregnant, we didn't want to take any chances.
He told us the surgery would take about an hour. It took 2 1/2 hours. Twice he had a nurse call me in the waiting room to update me and tell me everything was going okay, once during and once as they were closing up.
When he came to talk to me in the waiting area he walked up to me grinning like the cat that got the canary.
That's far more reassuring than it sounds. When a surgeon is wearing the "I fought a tough battle and I kicked its ass" grin, you know the world is okay.
He didn't withhold details from me. He'd already figured out that I could handle it.
He still didn't think it looked malignant, but he'd followed our wishes. Also, it was one of the largest masses he had seen, with the most extensive vascular network he had seen. He'd brought out the big guns.
Good thing too, as nine days later he's the one who delivered the bad news about the pathology (it was aggressively malignant; and without removal Chris could have been dead within a few months), and that Chris would be undergoing aggressive, high dose radioactive iodine ablation. He then passed the football back to our awesome endocrinologist.
Our awesome endocrinologist who, at the RAI consult, decided to keep bringing the big guns. He believed us when we told him we were already on a pretty low-iodine diet and had already stopped the thyroid supplementation in preparation for the treatment. He took us on our word, had a blood test run to confirm that Chris was ready, and had Chris booked for RAI by the end of the afternoon.
They usually wait six to eight weeks, just to make sure; but the doc understood how serious we were about nuking this bastard from orbit, and exactly one month after surgery Chris received his first RAI treatment. The minimum amount of time after surgery, the maximum dosage allowed for all but the most extreme life-threatening cases. We prepped to the max; not only did Chris adhere to a low-iodine diet, he went way past low-iodine requirements and made his body as desperate for iodine as possible.
It's not just the docs who get to bring out the big guns. Sometimes the patients can do that for themselves.
I can't state enough how unusual it is for doctors and patients to agree on going all-out, much less putting it into practice. It's almost unheard of. Usually both sides are much more cautious, would rather extend treatment than risk bad side effects or collateral damage.
Clearly Chris isn't a normal patient, and these aren't normal doctors.
Using the big guns does have a few drawbacks. Chris is incredibly sick; he's so hypothyroid and soaked up so much radiation that we weren't really prepared for how bad he'd feel.
Incredibly sick is a good sign. A sign that we maximized the amount of the RAI he'd soak up, and a sign that there's not much thyroid tissue left to cause a problem. This is one case where being really sick means you did something right.
In another week he'll undergo the full-body gamma camera scan to see where the RAI soaked up and identify any other masses that need to be removed. If that's clear or mostly clear (small spots will be cleared up over the next 6 months as the RAI clears his system) treatment will be considered successful. If there are a lot of specks remaining, large concentrations of specks, or any clear masses; they'll wait a few weeks for the remaining I-131 to clear his system, then dose him again, and scan him again.
They'll scan him again in six months to check for any other masses or concentrations of specks, and there's a chance he'll need to go for another treatment; but if the treatment was aggressive enough in the first place, it's unlikely (then he'll have to get a scan once a year for the rest of his life).
They'll scan him again in six months to check for any other masses or concentrations of specks, and there's a chance he'll need to go for another treatment; but if the treatment was aggressive enough in the first place, it's unlikely (then he'll have to get a scan once a year for the rest of his life).
If treatment was successful the endocrinologist will start the thyroid hormone replacement regimen and start tinkering with dosages. He won't be starting at the normal "safe" starting point either; he's willing to calculate dosage according to what he knows about Chris and try to get the dose right the first time (400mcg per day; about four times the normal starting dose). He'll still be bringing out the big guns.
This is what happens when you're an educated patient, you find the right doctors, and you're willing to take some risks in order to get it done right the first time.
Being willing to take chances, using the big guns, and finding the right doctors is what it takes sometimes.
Especially if you happen to be a radioactive zebra.
Mel
Thursday, March 22, 2012
A little health update, and I'm getting some "free" money... sort of...
I'm not sick anymore... WEll of course I still have the cancer and the endocrine problems and the crazy hormones and the edema and... you get the picture; but at least I am finally over my creeping crud...
It's just 3 weeks later, and I'm better, yay!
I actually had a docs appointment today. My regular update for the doc, plus I had to get some bloodwork done. I got drawn for my monthly liver and kidney function (they just do a CMP) and and lipid panel.
I usually get the lipid panel twice a year, and had my last one in December so I wouldn't normally be due 'til June. However, our new health insurance plan gives us $250 (each) into our HSA for filling in a "health assessment", and another $350 (each) for getting an updated "biometric screening", which includes a CMP and lipid panel. Oh and $200 each for a couple of online self paced "health education" classes.
Basically, we get a total of $1600 into our HSA for the two of us having a doctors visit and a blood test each (well, actually it's like 19 blood tests, but it's only one blood draw) and a couple hours of filling out online forms.
Not bad. Better than the $700 total the company used to contribute annually to the HSA, and helping, a little bit anyway, to offset our increased cost of prescription medication.
In other good news, my fasting blood sugar is still normal (114), as is my a1c (5.4%), resting heart rate (72) and blood pressure (128/84 this morning).
We'll see how my cholesterol is in a couple days when the lipid panel gets back. I'm guessing a bit higher than last time just based on my diet and lack of exercise over the past few months, but last time I was around 160 so I'm not too worried.
I also talked to my Oncological surgeons assistant today, and she still wants me stabilized below 360 before she does the surgery.
The really irritating thing has been myweight continuing to yo-yo. Before I got sick I was fluctuating wildly in a range between 349 and 386. Since I've been sick I only took the diuretics a couple times (when my hands or feet or both swelled up enough to be painful) and over the course of three weeks, gained 50 lbs.
So yeah, that's irritating, but it's nothing new; and I'll be back down where I was within two weeks of being back on the diuretics consistently.
Basically, no real change since last time, which is, I suppose, a good thing; but still kinda frustrating.
It's just 3 weeks later, and I'm better, yay!
I actually had a docs appointment today. My regular update for the doc, plus I had to get some bloodwork done. I got drawn for my monthly liver and kidney function (they just do a CMP) and and lipid panel.
I usually get the lipid panel twice a year, and had my last one in December so I wouldn't normally be due 'til June. However, our new health insurance plan gives us $250 (each) into our HSA for filling in a "health assessment", and another $350 (each) for getting an updated "biometric screening", which includes a CMP and lipid panel. Oh and $200 each for a couple of online self paced "health education" classes.
Basically, we get a total of $1600 into our HSA for the two of us having a doctors visit and a blood test each (well, actually it's like 19 blood tests, but it's only one blood draw) and a couple hours of filling out online forms.
Not bad. Better than the $700 total the company used to contribute annually to the HSA, and helping, a little bit anyway, to offset our increased cost of prescription medication.
In other good news, my fasting blood sugar is still normal (114), as is my a1c (5.4%), resting heart rate (72) and blood pressure (128/84 this morning).
We'll see how my cholesterol is in a couple days when the lipid panel gets back. I'm guessing a bit higher than last time just based on my diet and lack of exercise over the past few months, but last time I was around 160 so I'm not too worried.
I also talked to my Oncological surgeons assistant today, and she still wants me stabilized below 360 before she does the surgery.
The really irritating thing has been myweight continuing to yo-yo. Before I got sick I was fluctuating wildly in a range between 349 and 386. Since I've been sick I only took the diuretics a couple times (when my hands or feet or both swelled up enough to be painful) and over the course of three weeks, gained 50 lbs.
So yeah, that's irritating, but it's nothing new; and I'll be back down where I was within two weeks of being back on the diuretics consistently.
Basically, no real change since last time, which is, I suppose, a good thing; but still kinda frustrating.
Tuesday, November 29, 2011
Back to the docs again, for the roller coaster ride
So, when I checked in on this issue last, I had managed to break down as far as 380lbs, and was holding steady under 395 most days; that being 117lbs weight loss in 9 months.
Unfortunately, a couple months back, my peripheral neuropathy began to get worse... much worse.
By about six weeks ago, I got to the point where I couldn't actually feel my fingers or toes, could only partially feel my palms; and had tingling and shooting pain from my fingertips and toes, to my elbows and knees.
It was a matter of good days and bad days; some days it wasn't all that bad, somedays I couldn't make a fist.
My docs didn't really have any idea what was up. There was no obvious reason for the problem; except for the swelling caused by the edema, and that shouldn't have been enough to cause neuropathy that severe (though some was expected).
One rather nasty possibility, was pernicious anemia; which is the loss of ability to absorb b12. B12 deficiency is the second most common cause of peripheral neuropathy.
At the same time, my diuretics also stopped working; however my kidney function was OK.
That was an indicator, that I was severely deficient in something; but we couldn't figure out what, because my blood serum levels were all in the "normal" range.
As a last ditch measure, we decided to stop all my medications for a week, to see what would happen.
What happened, was that my neuropathy improved dramatically.
What also happened however, was that I gained 48lbs in a week; shooting up to 428lbs.
We also did a series of blood tests before and after, and again everything seemed normal (except my cholesterol is up from 160 to 180 in three months; which is odd since I haven't been eating as much red meat or fatty foods lately). My a1c was 5.6% (the most common cause of neuropathy is elevated blood sugar). My b12 level was 470pg/ml, which is right in the middle of normal (though they prefer to see levels around 700).
Of course, that B12 level was after me taking megadoses of the stuff every day for months (megadoses in the range of 100,000% RDA); so it really should have been higher.
That was an indication that I wasn't absorbing B vitamins properly; but since I've managed to get my potassium and magnesium under control, it was somewhat odd.
We added my medications back one at a time to see if we could induce a problem again; we couldn't.
So... what happened?
Excess vitamin B6 is what happened.
Or rather, I made an idiotic mistake is what happened.
When my neuropathy started becoming more than just an annoyance, and I started having some problems with B vitamin absorption, I started taking large doses of the various B vitamins. At first, that made the neuropathy much better, but after a couple weeks, it started getting worse again.
Apparently, a side effect of large doses of B6 is severe neuropathy.
The funny thing is, that's also an effect of being deficient in b1, b2, b3, b5, and b12; and prior to taking the high levels of supplementation I was experiencing the effects of too LITTLE B6, which include seborrheic dermatitis (really bad dandruff, acne, and skin rashes).
So, I had to supplement all the B vitamins, but I was taking too much of the b6.
So, we switched from a b complex (which is all the B vitamins mixed together), and cut way back on the B6 supplement; and my neuropathy is back to a tolerable level. Now I'm back on my normal ridiculous dose of diuretics and anti-inflammatories.
The only problem is, I may have suffered some permanent nerve damage. We'll know in a couple months whether things go back to "normal", or whether there is going to be some permanent pain and loss of sensation.
In the mean time, I've lost pretty much all of those 48 pounds since Wednesday (when I got the last of my test results); weighing in at 382 yesterday morning (yeah, I know, 46lbs in five days isn't healthy).
The funny thing is, I'm still bloated with excess water (and my weight is still fluctuating as much as 16lbs per day)... I'd estimate at least 16lbs worth; so my "Real" weight is probably something between 360lbs and 370lbs.
Oh and my sleep apnea stopped as soon as I dropped under 400lbs (and was very much reduced when I went under 420).
My endocrinologist is recommending to my surgeon that she conduct the surgery as soon as possible, that I don't need to lose any more weight before she does it (when we spoke a few weeks ago, she wanted to wait 'til I was at 360lbs).
So, we'll see. Maybe I can get the tumor out this year (and under this deductible). If not, I'll have another $16,000 in medical bills I can't afford in the first few months of next year.
Mean time, this is what I look like today:
I have a jaw and cheekbones again. Compare that picture to this picture from my brothers funeral in JAnuary:
or even this picture in August:
The difference is huge. For one thing, I have a chin and cheekbones again.
Unfortunately, a couple months back, my peripheral neuropathy began to get worse... much worse.
By about six weeks ago, I got to the point where I couldn't actually feel my fingers or toes, could only partially feel my palms; and had tingling and shooting pain from my fingertips and toes, to my elbows and knees.
It was a matter of good days and bad days; some days it wasn't all that bad, somedays I couldn't make a fist.
My docs didn't really have any idea what was up. There was no obvious reason for the problem; except for the swelling caused by the edema, and that shouldn't have been enough to cause neuropathy that severe (though some was expected).
One rather nasty possibility, was pernicious anemia; which is the loss of ability to absorb b12. B12 deficiency is the second most common cause of peripheral neuropathy.
At the same time, my diuretics also stopped working; however my kidney function was OK.
That was an indicator, that I was severely deficient in something; but we couldn't figure out what, because my blood serum levels were all in the "normal" range.
As a last ditch measure, we decided to stop all my medications for a week, to see what would happen.
What happened, was that my neuropathy improved dramatically.
What also happened however, was that I gained 48lbs in a week; shooting up to 428lbs.
We also did a series of blood tests before and after, and again everything seemed normal (except my cholesterol is up from 160 to 180 in three months; which is odd since I haven't been eating as much red meat or fatty foods lately). My a1c was 5.6% (the most common cause of neuropathy is elevated blood sugar). My b12 level was 470pg/ml, which is right in the middle of normal (though they prefer to see levels around 700).
Of course, that B12 level was after me taking megadoses of the stuff every day for months (megadoses in the range of 100,000% RDA); so it really should have been higher.
That was an indication that I wasn't absorbing B vitamins properly; but since I've managed to get my potassium and magnesium under control, it was somewhat odd.
We added my medications back one at a time to see if we could induce a problem again; we couldn't.
So... what happened?
Excess vitamin B6 is what happened.
Or rather, I made an idiotic mistake is what happened.
When my neuropathy started becoming more than just an annoyance, and I started having some problems with B vitamin absorption, I started taking large doses of the various B vitamins. At first, that made the neuropathy much better, but after a couple weeks, it started getting worse again.
Apparently, a side effect of large doses of B6 is severe neuropathy.
The funny thing is, that's also an effect of being deficient in b1, b2, b3, b5, and b12; and prior to taking the high levels of supplementation I was experiencing the effects of too LITTLE B6, which include seborrheic dermatitis (really bad dandruff, acne, and skin rashes).
So, I had to supplement all the B vitamins, but I was taking too much of the b6.
So, we switched from a b complex (which is all the B vitamins mixed together), and cut way back on the B6 supplement; and my neuropathy is back to a tolerable level. Now I'm back on my normal ridiculous dose of diuretics and anti-inflammatories.
The only problem is, I may have suffered some permanent nerve damage. We'll know in a couple months whether things go back to "normal", or whether there is going to be some permanent pain and loss of sensation.
In the mean time, I've lost pretty much all of those 48 pounds since Wednesday (when I got the last of my test results); weighing in at 382 yesterday morning (yeah, I know, 46lbs in five days isn't healthy).
The funny thing is, I'm still bloated with excess water (and my weight is still fluctuating as much as 16lbs per day)... I'd estimate at least 16lbs worth; so my "Real" weight is probably something between 360lbs and 370lbs.
Oh and my sleep apnea stopped as soon as I dropped under 400lbs (and was very much reduced when I went under 420).
My endocrinologist is recommending to my surgeon that she conduct the surgery as soon as possible, that I don't need to lose any more weight before she does it (when we spoke a few weeks ago, she wanted to wait 'til I was at 360lbs).
So, we'll see. Maybe I can get the tumor out this year (and under this deductible). If not, I'll have another $16,000 in medical bills I can't afford in the first few months of next year.
Mean time, this is what I look like today:
I have a jaw and cheekbones again. Compare that picture to this picture from my brothers funeral in JAnuary:
or even this picture in August:
The difference is huge. For one thing, I have a chin and cheekbones again.
Tuesday, May 31, 2011
Excess volatility
Just thought I'd illustrate for you the kind of day to day variability the "excess dependent fluid retention" brings to my life.
Last Wednesday morning, I weighed 434lbs.
Last Friday I had a doctors appointment, and I weighed 444lbs. I could definitely feel the swelling start Wednesday afternoon and build through Thursday.
All day Saturday and Sunday I could feel the swelling increasing in my feet and calves. Saturday I was 452. Sunday night I hit 458lbs.
As I type this, I weigh 446 lbs.
This is all same dosage of diuretics taken the same way, with approximately the same level of fluid intake (four to six quarts each day), the same vitamins, approximately the same salt intake, close to the same caloric intake. The only thing different is how much my body retains.
Did you know it was possible to be "brown urine" level dehydrated, while still retaining enough water to float a canoe?
It's rather irritating when you work and starve yourself for three months to lose 35 real pounds, and then in four days, you're back right where you started.
Last Wednesday morning, I weighed 434lbs.
Last Friday I had a doctors appointment, and I weighed 444lbs. I could definitely feel the swelling start Wednesday afternoon and build through Thursday.
All day Saturday and Sunday I could feel the swelling increasing in my feet and calves. Saturday I was 452. Sunday night I hit 458lbs.
As I type this, I weigh 446 lbs.
This is all same dosage of diuretics taken the same way, with approximately the same level of fluid intake (four to six quarts each day), the same vitamins, approximately the same salt intake, close to the same caloric intake. The only thing different is how much my body retains.
Did you know it was possible to be "brown urine" level dehydrated, while still retaining enough water to float a canoe?
It's rather irritating when you work and starve yourself for three months to lose 35 real pounds, and then in four days, you're back right where you started.
Thursday, May 26, 2011
Meh... shit day
Hormones all screwed up today. Edemas bad on the lower end. One other thing I neglected to mention was that when my hormones are screwed up, my bodies temperature regulation goes all to hell. I go from sweats to chills in a few minutes.
Got a 4 day weekend coming... at least in theory. In reality I still have a phone meeting I have to hit in the morning, and then a doctors appointment and some tests tomorrow.
Got a 4 day weekend coming... at least in theory. In reality I still have a phone meeting I have to hit in the morning, and then a doctors appointment and some tests tomorrow.
Tuesday, May 24, 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.
700lbs
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?
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.
700lbs
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?
Wednesday, November 12, 2008
Active Minds means Saved Lives
"Greater love hath no man than this; that a man lay down his life for his friends" -- John 15:13
In June of 2005, then Captain (now Major) Charles "Chuck" Ziegenfuss, led an armored patrol in force into an Iraqi town where intelligence had indicated an ambush of U.S. forces was planned.
On arriving in the town, Cpt. Ziegenfuss was approached by a local resident, and informed of a large IED that was placed near his house overnight. Because his tank could not cross a bridge over a small irrigation canal to enter the town, Cpt. Ziegenfuss dismounted, and was proceeding on foot to investigate; when a second IED that had been previously buried under the roadway was detonated.
Cpt. Ziegenfuss was blown several meters into the canal; suffering severe shrapnel wounds over almost the entirety of his body excepting where he was protected by armor. He also lost half of one hand, part of the other, and much of the skin and muscle on his arms and legs to the blast.
I'm proud to say I know Chuck, and I've shot with him (he's a damn fine shot even still). He's a funny guy, with a hell of a lot of guts. A lot of other folks would've said "Well, I've had enough now"... but that just isn't the kind of guy he is. He's back on active duty, instructing ROTC cadets in his home state of Pennsylvania, and he plans on staying on active duty until they kick him out.
When Chuck was in the hospital recovering from his wounds (I should note, it's been three years and he is still in recovery; though he has been back on active duty since 2006); he figured something out: What he really wanted most, to help him get through the pain, and the boredom, and the mind numbing misery that is an extended hospital stay... was a laptop.
Thing is though, Chuck had two half hands, both wrapped in bandages. How was he going to use a laptop?
Well, he's not a quitter (there's an understatement). He had an idea, and he asked Soldiers Angels to help him out. Could they get him a laptop, with voice command software installed on it, so he could run the thing without using his hands much?
The Soldiers Angels motto is "Let no soldier go unloved", and these people move mountains, at great personal cost in time, energy, and money; to make sure that every soldier gets what they need to help them get through their times of hardship.
Turns out, the Angels more than lived up to their reputation, and they could indeed get Chuck a laptop, and they did, and it worked. He was able to keep his mind active, and keep communicating with the world at large even while he was laid up.
In fact, it was such an improvement to his morale, that he was able to (in fact he damn near forced them to) reduce his pain medication. So long as he could keep his mind occupied with other things, his pain didn't seem to matter as much.
Now, at this point, you might have got the notion that Chuck isn't one to lay down, even when he's lost 30lbs of muscle and bone, and is on enough morphine to kill a horse.
See, he figured, that if a voice activated laptop did so much for him, why couldn't they do this for other wounded soldiers. So he pitched the idea to Soldiers Angels; and Project Valour IT was born.
Voice Activated Laptops for Our Injured Troops - Valour IT.
Valour IT buys laptop computers, and accessibility accessories for wounded soldiers. Be they wounded in combat or training, if they need a laptop, and Valor IT has the money, they're getting a laptop and everything they need to make it work.
...If they have the money.
So far, Valour IT has raised enough to give over 1500 laptops to our wounded soldiers, sailors, airmen, and Marines; but there are more wounded men and women that could use our help.
So, just to keep this in the military spirit (and to use our rivalry to best effect), they have an annual interservice fundraising drive; with teams from and supporting each of the services competing to raise the most cash for the cause.
One should note, all the money ends up being used for ALL service members; the money raised by the Air Force team doesn't go only to Airmen. It's just a way of having a little fun while raising money for a good cause.
This is a standard, tax deductible charitable donation, and I can't imagine a better cause. All my charitable giving for the last two years, and for the foreseeable future (excepting that going to my parish), is going to Valour IT; and I ask you to please help in any way you can.
In June of 2005, then Captain (now Major) Charles "Chuck" Ziegenfuss, led an armored patrol in force into an Iraqi town where intelligence had indicated an ambush of U.S. forces was planned.
On arriving in the town, Cpt. Ziegenfuss was approached by a local resident, and informed of a large IED that was placed near his house overnight. Because his tank could not cross a bridge over a small irrigation canal to enter the town, Cpt. Ziegenfuss dismounted, and was proceeding on foot to investigate; when a second IED that had been previously buried under the roadway was detonated.
Cpt. Ziegenfuss was blown several meters into the canal; suffering severe shrapnel wounds over almost the entirety of his body excepting where he was protected by armor. He also lost half of one hand, part of the other, and much of the skin and muscle on his arms and legs to the blast.
I'm proud to say I know Chuck, and I've shot with him (he's a damn fine shot even still). He's a funny guy, with a hell of a lot of guts. A lot of other folks would've said "Well, I've had enough now"... but that just isn't the kind of guy he is. He's back on active duty, instructing ROTC cadets in his home state of Pennsylvania, and he plans on staying on active duty until they kick him out.
When Chuck was in the hospital recovering from his wounds (I should note, it's been three years and he is still in recovery; though he has been back on active duty since 2006); he figured something out: What he really wanted most, to help him get through the pain, and the boredom, and the mind numbing misery that is an extended hospital stay... was a laptop.
Thing is though, Chuck had two half hands, both wrapped in bandages. How was he going to use a laptop?
Well, he's not a quitter (there's an understatement). He had an idea, and he asked Soldiers Angels to help him out. Could they get him a laptop, with voice command software installed on it, so he could run the thing without using his hands much?
The Soldiers Angels motto is "Let no soldier go unloved", and these people move mountains, at great personal cost in time, energy, and money; to make sure that every soldier gets what they need to help them get through their times of hardship.
Turns out, the Angels more than lived up to their reputation, and they could indeed get Chuck a laptop, and they did, and it worked. He was able to keep his mind active, and keep communicating with the world at large even while he was laid up.
In fact, it was such an improvement to his morale, that he was able to (in fact he damn near forced them to) reduce his pain medication. So long as he could keep his mind occupied with other things, his pain didn't seem to matter as much.
Now, at this point, you might have got the notion that Chuck isn't one to lay down, even when he's lost 30lbs of muscle and bone, and is on enough morphine to kill a horse.
See, he figured, that if a voice activated laptop did so much for him, why couldn't they do this for other wounded soldiers. So he pitched the idea to Soldiers Angels; and Project Valour IT was born.
Voice Activated Laptops for Our Injured Troops - Valour IT.
Valour IT buys laptop computers, and accessibility accessories for wounded soldiers. Be they wounded in combat or training, if they need a laptop, and Valor IT has the money, they're getting a laptop and everything they need to make it work.
...If they have the money.
So far, Valour IT has raised enough to give over 1500 laptops to our wounded soldiers, sailors, airmen, and Marines; but there are more wounded men and women that could use our help.
So, just to keep this in the military spirit (and to use our rivalry to best effect), they have an annual interservice fundraising drive; with teams from and supporting each of the services competing to raise the most cash for the cause.
One should note, all the money ends up being used for ALL service members; the money raised by the Air Force team doesn't go only to Airmen. It's just a way of having a little fun while raising money for a good cause.
This is a standard, tax deductible charitable donation, and I can't imagine a better cause. All my charitable giving for the last two years, and for the foreseeable future (excepting that going to my parish), is going to Valour IT; and I ask you to please help in any way you can.
Tuesday, June 03, 2008
From the ICU
Or technically, in the waiting room outside the ICU at UMC Tucson.
Mels mother has taken a turn for the worse. We're here waiting to see what happens, but she needs a miracle. She hasn't even partially woken in a while, and they don't expect she will. They're giving her a day or two at most, and she has a DNR/NHM in place.
Obviously, blogging will be light or non-existant.
UPDATE: Some decisions have been made. They're going to continue support long enough for the family to finish saying goodbye.
Mels mother has taken a turn for the worse. We're here waiting to see what happens, but she needs a miracle. She hasn't even partially woken in a while, and they don't expect she will. They're giving her a day or two at most, and she has a DNR/NHM in place.
Obviously, blogging will be light or non-existant.
UPDATE: Some decisions have been made. They're going to continue support long enough for the family to finish saying goodbye.
Saturday, May 31, 2008
Praying
Mels mother is in critical condition in the ICU right now.
They've induced a coma and have her on a ventilator. It seems that she's got peritonitis, and a perforated intestine; a complication from multiple surgeries for an aggressive cancer discovered a few weeks ago. Shes also aspirating waste laden fluid, so there's more going on that they haven't found yet.
The thing is, it wasn't the cancer that put her here. She's had fluid buildup in her abdomen and chest for several weeks now (predating the peritonitis. It's the first thing they checked for weeks ago), and they haven't found the cause. The fluid tests clear, it's not infected seepage.
They keep giving her palliative care (painkillers and draining the fluid) but they haven't done any real diagnostics on what is causing this fluid buildup. Instead, they've transferred her to two different hospitals, discharged her twice (while the fluid was still building up) over the objection of her oncologist... it's a charlie fox all the way around.
Clearly there's more going on, but we haven't found out yet.
At least now they've transferred her to the right hospital. She's at the Arizona Cancer Center at University Hospital Tucson. Mel says the docs there are doing about 10 times the job of her previous two hospitals.
Mel is with her father at the hospital now, while I watch the kids (no young children in the ICU).
UPDATE: Her kidneys have shut down, and her blood sugar is over 340 after having no nutrition for 24+ hours (she wasn't able to keep anything down. The nausea medication wasn't working. They were going to hang a sugar bag after her transfer).
It looks like she's having additional complications from previously undiagnosed diabetes. In this case it's a complication not a causative factor; we still don't know what the root causes here are.
At this point she's had some some heart damage as well, most likely from the diabetes. It doesn't look good.
UPDATE 2: Shes still in critical condition, but she's stable. The doctors think she'll be OK at least for the weekend. They want her to stabilize for at least 24 hours, then she'll have more surgery... most likely Monday morning.
Mel's coming home for the night, then she'll go back on Monday to be there for the surgery.
They've induced a coma and have her on a ventilator. It seems that she's got peritonitis, and a perforated intestine; a complication from multiple surgeries for an aggressive cancer discovered a few weeks ago. Shes also aspirating waste laden fluid, so there's more going on that they haven't found yet.
The thing is, it wasn't the cancer that put her here. She's had fluid buildup in her abdomen and chest for several weeks now (predating the peritonitis. It's the first thing they checked for weeks ago), and they haven't found the cause. The fluid tests clear, it's not infected seepage.
They keep giving her palliative care (painkillers and draining the fluid) but they haven't done any real diagnostics on what is causing this fluid buildup. Instead, they've transferred her to two different hospitals, discharged her twice (while the fluid was still building up) over the objection of her oncologist... it's a charlie fox all the way around.
Clearly there's more going on, but we haven't found out yet.
At least now they've transferred her to the right hospital. She's at the Arizona Cancer Center at University Hospital Tucson. Mel says the docs there are doing about 10 times the job of her previous two hospitals.
Mel is with her father at the hospital now, while I watch the kids (no young children in the ICU).
UPDATE: Her kidneys have shut down, and her blood sugar is over 340 after having no nutrition for 24+ hours (she wasn't able to keep anything down. The nausea medication wasn't working. They were going to hang a sugar bag after her transfer).
It looks like she's having additional complications from previously undiagnosed diabetes. In this case it's a complication not a causative factor; we still don't know what the root causes here are.
At this point she's had some some heart damage as well, most likely from the diabetes. It doesn't look good.
UPDATE 2: Shes still in critical condition, but she's stable. The doctors think she'll be OK at least for the weekend. They want her to stabilize for at least 24 hours, then she'll have more surgery... most likely Monday morning.
Mel's coming home for the night, then she'll go back on Monday to be there for the surgery.
Tuesday, February 26, 2008
Mothers little helper
Anti-depressants don't work.
Ok, that's an attention grabber of a headline; and it's not completely true: For SOME people, anti-depressants and other mood controlling drugs, work very well.
For SOME people.
However, those people generally do not include children (in the U.S. somewhere between 5% and 10% of whom are now on some kind of mood controlling drug); and, critically, almost all of the people who take them.
About 2% of the U.S. adult population take mood controlling drugs of some kind; and according to an exhaustive review of all effectiveness data and trials (trials which were conducted by the drug companies themselves, as well as independent trials), for those persons whose mood disorder is not classified as "severe", mood controllers were no more effective than a placebo.
Under todays standards, "severe" mood disorder sufferers only make up between 5% and 20% (there are no good numbers, because doctors and researchers disagree on standards) of the population diagnosed with some type of mood disorder.
So, mood controllers are ineffective, between 80% and 95% of the time; and yet, they are among the most prescribed drugs in this country.
Incredible... or maybe not, if you understand the "mental health" field.
Why are they ineffective? How about because MOST OF THE PEOPLE TAKING THEM DON'T NEED THEM.
Most of the people who are prescribed mood controlling drugs, don't have any objectively identifiable disorder; they are prescribed for "better quality of life" or "reduction of general anxiety" etc... when basically the people taking them are mentally and physically healthy.
There is a huge difference between a mental illness, and an emotional problem; and they MUST Be treated differently.
Sure someone may be having an emotional issue; but if they don't have a chemical or physical problem, a chemical solution is, at best, just a mask. It doesn't solve the problem... in fact it often just makes the underlying issues worse.
Perhaps I should soften that statement; because sometimes emotional issues are so overwhelming, that people lose control of themselves, or simply cannot deal with their issues. Medication can help those people regain control, and start working on their underlying problems; but it still isn't the solution.
Of course, when you give someone a drug that is designed to change their mental state, well, their mental state is probably going to be changed. Their core problem won't be solved, but now they're impotent, or have twitches, or unexplained angry outbursts, or a million other things... because we really don't understand how these drugs work, or what they REALLY do to our minds and bodies.
1 out of every 50 adults, and one out of every 20 children are being told (sometimes being forced even) by their doctors to take these drugs; without an understanding of their effects, and their side effects; and now we know, without even an understanding of their efficacy.
What you have to understand is, we're all just one big money making experiment for the mental health industry.
Under the most recent guidlines published for diagnosing mood disorders, as many as 70% of the population could qualify. Almost all male children would qualify. In fact, if you look at diagnostic criteria, almost all normal male behavior could be taken as signs of a mood disorder; and the standard for diagnosis is generally speaking three or more symptomatic behaviors.
The mental health industry has steadily forced themselves into being a legitimate and major portion of medicine. Almost everyone in America today will see a psychiatrist or psychologist in their lifetime, at the very least in their schools. They have positioned themselves as being just like your general practitioner, helping in preventative medicine and quality of life issues...
...But they aren't that; at least not legitimately.
It's a huge growth business, because they keep defining down the standards for who needs mental health care. At this point, you could be the healthiest, happiest, most mentally well adjusted person on the planet; and after a couple hours with a psychiatrist, you'll be on two medications (one to control the side effects of the other of course) and in a regular course of therapy.
Why?
Because it's their job, that's why; and everyone wants to be successful in their job.
It's the old carpenter problem "when the only tool you have is a hammer, every problem starts to look like a nail".
I have NEVER met a psychologist who didn't think that just about everyone could use therapy. In fact, they are explicitly taught that everyone except true psychopaths can benefit from some type of therapy, if only they would try, or accept it, or be honest etc...
I have RARELY met a psychiatrist who didn't think that at least some of most peoples "problems" could be "solved" pharmaceutically.
The problem here is most peoples "problems" are not subject to a therapeutic solution, be it psychological or psychiatric. Their problems are either practical in nature "I don't make enough money", or they are issue of personal emotion "I'm not happy with how much money I make".
Neither of those problems can be solved by a doctor with a couch or a pill.
Then there's the fact that most of the time, emotional issues are temporary; and guess what, that's OK.
It's OK to be depressed, or upset, or sad, or angry, or hyper... sometimes. It's even OK if they get in the way of your life... sometimes.
We here in the U.S. seem to have bought into this idea that everyone has to be perfectly happy, and satisfied all the time. Never angry, never depressed, never manic...
How boring.
I WANT to be angry sometimes. I WANT to be depressed. I want to be manic, and hyper and super happy.
Love.
Invention.
Inspiration.
Competition.
Drive.
Success.
... all of these things march hand in hand with strong emotions.
It's only when those issues, and emotions screw up your life all the time; and you can't deal with them on your own, or with your family and friends; that people should really start thinking about seeking outside help.
Ok yes, I'm exaggerating a bit. There are a fair number of mental health professionals on either side, who will tell people "you don't need me, or him"; but they are a small minority in my experience.
Also, don't take this to mean I think all psychiatry or psychology are useless; I don't. There are millions of people who are helped by psychiatric medicine. People who could not otherwise function, because their brains just don't work right. Millions more are helped by therapy, because they need to talk to someone who understands their emotional issues; and can help them work through them.
Most people though, most of the time; what they need is a buddy, a beer, and a better job; not a bottle full of pills.
Ok, that's an attention grabber of a headline; and it's not completely true: For SOME people, anti-depressants and other mood controlling drugs, work very well.
For SOME people.
However, those people generally do not include children (in the U.S. somewhere between 5% and 10% of whom are now on some kind of mood controlling drug); and, critically, almost all of the people who take them.
About 2% of the U.S. adult population take mood controlling drugs of some kind; and according to an exhaustive review of all effectiveness data and trials (trials which were conducted by the drug companies themselves, as well as independent trials), for those persons whose mood disorder is not classified as "severe", mood controllers were no more effective than a placebo.
Under todays standards, "severe" mood disorder sufferers only make up between 5% and 20% (there are no good numbers, because doctors and researchers disagree on standards) of the population diagnosed with some type of mood disorder.
So, mood controllers are ineffective, between 80% and 95% of the time; and yet, they are among the most prescribed drugs in this country.
Incredible... or maybe not, if you understand the "mental health" field.
Why are they ineffective? How about because MOST OF THE PEOPLE TAKING THEM DON'T NEED THEM.
Most of the people who are prescribed mood controlling drugs, don't have any objectively identifiable disorder; they are prescribed for "better quality of life" or "reduction of general anxiety" etc... when basically the people taking them are mentally and physically healthy.
There is a huge difference between a mental illness, and an emotional problem; and they MUST Be treated differently.
Sure someone may be having an emotional issue; but if they don't have a chemical or physical problem, a chemical solution is, at best, just a mask. It doesn't solve the problem... in fact it often just makes the underlying issues worse.
Perhaps I should soften that statement; because sometimes emotional issues are so overwhelming, that people lose control of themselves, or simply cannot deal with their issues. Medication can help those people regain control, and start working on their underlying problems; but it still isn't the solution.
Of course, when you give someone a drug that is designed to change their mental state, well, their mental state is probably going to be changed. Their core problem won't be solved, but now they're impotent, or have twitches, or unexplained angry outbursts, or a million other things... because we really don't understand how these drugs work, or what they REALLY do to our minds and bodies.
1 out of every 50 adults, and one out of every 20 children are being told (sometimes being forced even) by their doctors to take these drugs; without an understanding of their effects, and their side effects; and now we know, without even an understanding of their efficacy.
What you have to understand is, we're all just one big money making experiment for the mental health industry.
Under the most recent guidlines published for diagnosing mood disorders, as many as 70% of the population could qualify. Almost all male children would qualify. In fact, if you look at diagnostic criteria, almost all normal male behavior could be taken as signs of a mood disorder; and the standard for diagnosis is generally speaking three or more symptomatic behaviors.
The mental health industry has steadily forced themselves into being a legitimate and major portion of medicine. Almost everyone in America today will see a psychiatrist or psychologist in their lifetime, at the very least in their schools. They have positioned themselves as being just like your general practitioner, helping in preventative medicine and quality of life issues...
...But they aren't that; at least not legitimately.
It's a huge growth business, because they keep defining down the standards for who needs mental health care. At this point, you could be the healthiest, happiest, most mentally well adjusted person on the planet; and after a couple hours with a psychiatrist, you'll be on two medications (one to control the side effects of the other of course) and in a regular course of therapy.
Why?
Because it's their job, that's why; and everyone wants to be successful in their job.
It's the old carpenter problem "when the only tool you have is a hammer, every problem starts to look like a nail".
I have NEVER met a psychologist who didn't think that just about everyone could use therapy. In fact, they are explicitly taught that everyone except true psychopaths can benefit from some type of therapy, if only they would try, or accept it, or be honest etc...
I have RARELY met a psychiatrist who didn't think that at least some of most peoples "problems" could be "solved" pharmaceutically.
The problem here is most peoples "problems" are not subject to a therapeutic solution, be it psychological or psychiatric. Their problems are either practical in nature "I don't make enough money", or they are issue of personal emotion "I'm not happy with how much money I make".
Neither of those problems can be solved by a doctor with a couch or a pill.
Then there's the fact that most of the time, emotional issues are temporary; and guess what, that's OK.
It's OK to be depressed, or upset, or sad, or angry, or hyper... sometimes. It's even OK if they get in the way of your life... sometimes.
We here in the U.S. seem to have bought into this idea that everyone has to be perfectly happy, and satisfied all the time. Never angry, never depressed, never manic...
How boring.
I WANT to be angry sometimes. I WANT to be depressed. I want to be manic, and hyper and super happy.
Love.
Invention.
Inspiration.
Competition.
Drive.
Success.
... all of these things march hand in hand with strong emotions.
It's only when those issues, and emotions screw up your life all the time; and you can't deal with them on your own, or with your family and friends; that people should really start thinking about seeking outside help.
Ok yes, I'm exaggerating a bit. There are a fair number of mental health professionals on either side, who will tell people "you don't need me, or him"; but they are a small minority in my experience.
Also, don't take this to mean I think all psychiatry or psychology are useless; I don't. There are millions of people who are helped by psychiatric medicine. People who could not otherwise function, because their brains just don't work right. Millions more are helped by therapy, because they need to talk to someone who understands their emotional issues; and can help them work through them.
Most people though, most of the time; what they need is a buddy, a beer, and a better job; not a bottle full of pills.
Tuesday, October 30, 2007
Help them at home
"Greater love hath no man than this; that a man lay down his life for his friends" -- John 15:13
In June of 2005, then Captain (now Major) Charles "Chuck" Ziegenfuss, led an armored patrol in force into an Iraqi town where intelligence had indicated an ambush of U.S. forces was planned.
On arriving in the town, Cpt. Ziegenfuss was approached by a local resident, and informed of a large IED that was placed near his house overnight. Because his tank could not cross a bridge over a small irrigation canal to enter the town, Cpt. Ziegenfuss dismounted, and was proceeding on foot to investigate; when a second IED that had been previously buried under the roadway was detonated.
Cpt. Ziegenfuss was blown several meters into the canal; suffering severe shrapnel wounds over almost the entirety of his body excepting where he was protected by armor. He also lost half of one hand, part of the other, and much of the skin and muscle on his arms and legs to the blast.
I'm proud to say I know Chuck, and I've shot with him (he's a damn fine shot even still). He's a funny guy, with a hell of a lot of guts. A lot of other folks would've said "Well, I've had enough now"... but that just isn't the kind of guy he is. He's back on active duty, instructing ROTC cadets in his home state of Pennsylvania, and he plans on staying on active duty until they kick him out.
When Chuck was in the hospital recovering from his wounds (I should note, it's been two years and he is still in recovery; though he has been back on active duty since 2006); he figured something out: What he really wanted most, to help him get through the pain, and the boredom, and the mind numbing misery that is an extended hospital stay... was a laptop.
Thing is though, Chuck had two half hands, both wrapped in bandages. How was he going to use a laptop?
Well, he's not a quitter (there's an understatement). He had an idea, and he asked Soldiers Angels to help him out. Could they get him a laptop, with voice command software installed on it, so he could run the thing without using his hands much?
The Soldiers Angels motto is "Let no soldier go unloved", and these people move mountains, at great personal cost in time, energy, and money; to make sure that every soldier gets what they need to help them get through their times of hardship.
Turns out, the Angels more than lived up to their reputation, and they could indeed get Chuck a laptop, and they did, and it worked. He was able to keep his mind active, and keep communicating with the world at large even while he was laid up.
In fact, it was such an improvement to his morale, that he was able to (in fact he damn near forced them to) reduce his pain medication. So long as he could keep his mind occupied with other things, his pain didn't seem to matter as much.
Now, at this point, you might have got the notion that Chuck isn't one to lay down, even when he's lost 30lbs of muscle and bone, and is on enough morphine to kill a horse.
See, he figured, that if a voice activated laptop did so much for him, why couldn't they do this for other wounded soldiers. So he pitched the idea to Soldiers Angels; and Project Valour IT was born.
Voice Activated Laptops for Our Injured Troops - Valour IT.
Valour IT buys laptop computers, and accessibility accessories for wounded soldiers. Be they wounded in combat or training, if they need a laptop, and Valor IT has the money, they're getting a laptop and everything they need to make it work.
...If they have the money.
So far, Valour IT has raised enough to give over 1500 laptops to our wounded soldiers, sailors, airmen, and Marines; but there are more wounded men and women that could use our help.
So, just to keep this in the military spirit (and to use our rivalry to best effect), they have an annual interservice fundraising drive; with teams from and supporting each of the services competing to raise the most cash for the cause.
One should note, all the money ends up being used for ALL servicemembers; the money raised by the Air Force team doesn't go only to AIrmen. It's jsut a way of having a little fun while raising money for a good cause.
Last year, the Navy kind of stomped on everyone, raising more than twice as much as any other team. Well, this year, that aint gonna happen, if this former bluesuiter has anything to do about it.
This is a standard, tax deductible charitable donation, and I can't imagine a better cause. All my charitable giving for this year, and the foreseeable future, excepting that going to my parish, is going to Valour IT; and I ask you to please help in any way you can.
In June of 2005, then Captain (now Major) Charles "Chuck" Ziegenfuss, led an armored patrol in force into an Iraqi town where intelligence had indicated an ambush of U.S. forces was planned.
On arriving in the town, Cpt. Ziegenfuss was approached by a local resident, and informed of a large IED that was placed near his house overnight. Because his tank could not cross a bridge over a small irrigation canal to enter the town, Cpt. Ziegenfuss dismounted, and was proceeding on foot to investigate; when a second IED that had been previously buried under the roadway was detonated.
Cpt. Ziegenfuss was blown several meters into the canal; suffering severe shrapnel wounds over almost the entirety of his body excepting where he was protected by armor. He also lost half of one hand, part of the other, and much of the skin and muscle on his arms and legs to the blast.
I'm proud to say I know Chuck, and I've shot with him (he's a damn fine shot even still). He's a funny guy, with a hell of a lot of guts. A lot of other folks would've said "Well, I've had enough now"... but that just isn't the kind of guy he is. He's back on active duty, instructing ROTC cadets in his home state of Pennsylvania, and he plans on staying on active duty until they kick him out.
When Chuck was in the hospital recovering from his wounds (I should note, it's been two years and he is still in recovery; though he has been back on active duty since 2006); he figured something out: What he really wanted most, to help him get through the pain, and the boredom, and the mind numbing misery that is an extended hospital stay... was a laptop.
Thing is though, Chuck had two half hands, both wrapped in bandages. How was he going to use a laptop?
Well, he's not a quitter (there's an understatement). He had an idea, and he asked Soldiers Angels to help him out. Could they get him a laptop, with voice command software installed on it, so he could run the thing without using his hands much?
The Soldiers Angels motto is "Let no soldier go unloved", and these people move mountains, at great personal cost in time, energy, and money; to make sure that every soldier gets what they need to help them get through their times of hardship.
Turns out, the Angels more than lived up to their reputation, and they could indeed get Chuck a laptop, and they did, and it worked. He was able to keep his mind active, and keep communicating with the world at large even while he was laid up.
In fact, it was such an improvement to his morale, that he was able to (in fact he damn near forced them to) reduce his pain medication. So long as he could keep his mind occupied with other things, his pain didn't seem to matter as much.
Now, at this point, you might have got the notion that Chuck isn't one to lay down, even when he's lost 30lbs of muscle and bone, and is on enough morphine to kill a horse.
See, he figured, that if a voice activated laptop did so much for him, why couldn't they do this for other wounded soldiers. So he pitched the idea to Soldiers Angels; and Project Valour IT was born.
Voice Activated Laptops for Our Injured Troops - Valour IT.
Valour IT buys laptop computers, and accessibility accessories for wounded soldiers. Be they wounded in combat or training, if they need a laptop, and Valor IT has the money, they're getting a laptop and everything they need to make it work.
...If they have the money.
So far, Valour IT has raised enough to give over 1500 laptops to our wounded soldiers, sailors, airmen, and Marines; but there are more wounded men and women that could use our help.
So, just to keep this in the military spirit (and to use our rivalry to best effect), they have an annual interservice fundraising drive; with teams from and supporting each of the services competing to raise the most cash for the cause.
One should note, all the money ends up being used for ALL servicemembers; the money raised by the Air Force team doesn't go only to AIrmen. It's jsut a way of having a little fun while raising money for a good cause.
Last year, the Navy kind of stomped on everyone, raising more than twice as much as any other team. Well, this year, that aint gonna happen, if this former bluesuiter has anything to do about it.
This is a standard, tax deductible charitable donation, and I can't imagine a better cause. All my charitable giving for this year, and the foreseeable future, excepting that going to my parish, is going to Valour IT; and I ask you to please help in any way you can.
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