Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Saturday, February 13, 2010

Dear Friend, part II (Dear Potter Part V)

The old Fool's letters continued to be delivered, the latest one arriving at the doorstep of one of his most faithful companions throughout the last months of the struggle that was not to be successful.

The usual greeting we have become accustomed to by now, but which still manages to strike emotion in the hearts of those recipients reading the one final love note and missive from their departed friend, opens this new communique:

Dear Friend,


No tears accompany this greeting, though the eyes of our current reader do mist over. They have spent too long wet these past few weeks, and now have a constant shadow of sadness left.

My beloved, my cherished, my loved...my friend. I am writing this with a heavy heart, for we were not able to have this conversation in person. I had been preparing these words to speak with you, when you were called away to duty elsewhere. I am sorry that it took me so long to come to the words which I needed to share with you, and now that I can share them, must be done from so far away.

Contrary to what he had believed, the friend's countenance becomes lachrymose recalling that sad day. He had longed to stay, but duty had intervened, and he had been recalled to active service for another six month stint away from home. He had considered fighting the order, but the Fool had urged him to follow through with his commitments. With a heavy heart, he had left, but had not been able to return until the cold stone marker was all he could grasp of his long time mentor and confidant...the memory still a bitter pill.

My friend, my brother, I do rejoice in the friends I have. I derive strength from your support. Though I'm broken, bloodied, and too tired to get out of bed for more than these few minutes to share my thoughts with you, I know that tomorrow is another day, and that I'll be able to face it and what it brings. It won't be easy, but it will be doable.


Not every day is a walk in the park. I sincerely thought I was having a heart attack when I went to bed a few hours ago. My chest ached, I could move my fingers, but I could feel nothing in them. A stab of pain went from my shoulder down to my elbow. As I lay there, I almost felt relieved. It meant that my sweet Potter agreed with me: I wasn't up to the task, and He was going to make sure the choice to face down my many personal demons was no longer mine.


I fell asleep, comforted in the fact that I'd written to most of the people I cared about in recent moments, and that I'd spoken to all who I loved and left them with good words the last time I did.


But then I woke up several hours later, and dragged myself to the bathroom. I looked in the mirror for a long, long time, and realized that this was not yet the time. I'm still here, I'm still driven, and I'm still hungry for this life and work. With the Potter's grace, and the love and trust and support of those of you who I turn to in my most difficult hours, I will face down this challenge and overcome. I need to rest now, but tomorrow the nose goes back to the grindstone. The steel must be constantly be worked, sharpened, toughened. I'll make it through, and I'll be a better person because of it all.


These words were the cruelest so far...the optimism that had not played out...the positive thinking that had been worth..nothing. The hot tears kept coming, as the friend paused, sinking just a little deeper into the bitterness that had become a constant companion these past few weeks. Of all the people to lose...could not the Potter have decided to take someone a little less...valuable?

I love all of you, I cherish all of you, and I thank all of you for all your trust and support. In these days when I can feel so alone and so detached from the world, it is good to know that these thoughts I pour into my machine make it through the blackness and out into your hearts and minds where I can feel your prayers and your steadfastness.


The friend's jaw set even tighter...the determination to allow the bitterness to wash over him was almost completely set in stone.

And yet, my friend, I can sense that you are not as joyful as you can be...and if you are reading this missive, I am certain that you will be even less joyful than you may have once been. For this, I am sorry...but I hope that you will give me just a few more minutes of your life, pay attention to this old man even in an echo of my presence, and hear my words..hear them very well.


The friend tried...he certainly tried , but at the moment every fiber of his soul screamed anger and rebellion, and listening to the words of his departed friend with the open heart and sincerity they demanded was not the easiest of tasks.

The reality of it all, my beloved, my friend, is that I have not been well for a long, long time. The reality is that it is a miracle that I live to see a single additional day. The reality is that I should have been gone a long time ago, but I have been given many, many, many more opportunities than I could have ever expected out of this old, malfunctioning husk. But the real kicker of a reality is that no matter how dire the situation...we're all in the same boat. Not any single one of us is guaranteed a single additional second of life...not me, not you, not anyone, my friend.


This was a little bit of a disturbing turn of topics...the friend had recoiled even more from considering his own mortality after life had given him too many opportunities to face the mortality of others. Being asked to face this was not something that was very much to his liking...especially not now...


I merely seek to make sure that all my friends are as comfortable with the reality as I am. My beloved friend, I’ve grown quite accustomed to this reality, and have embraced it, accepted it, and am HAPPY for the time I’m given each and every day rather than be bitter about time that was never mine to demand I be granted in the first place. I believe it is the state in which we all SHOULD live, but I know many of us don’t. Sadly, many of us prefer to remain perfectly blind and oblivious to the miraculous gift that each and every single day of life is.


My close friends and I have all loved each other dearly…dearly. I would lay down my life in a heartbeat for any of you, and most of you would do the same for me. Our pain is each other’s pain, our triumph’s, each other’s joy, and our failures, each other’s sorrow and lessons. And yet, we all are subject to this same reality.


There it was again...that unpleasant feeling, that mortality being rubbed in his face...he was starting to wish he had left this letter sealed and stored...


But here is the true miracle, my friend. This reality, it is a scorpion with no stinger. It is a shadow with no caster. It is a barking dog with no bite. It’s not something to fear, dread, or loathe. At least not in my life, dear one. I will have had a full life, no matter what, and I have an undying faith that I will be pleased with what I see when it is over.


I see peace, not dread. I feel an urgency only to benefit as many young lives as I can, not to worry about how to extend my own. I do, however, feel a responsibility to take care of myself when and how I can so that I can do whatever is reasonable to achieve this goal. But we must, we MUST be able to live richly and fully within the confines of that reality, my friend. Because if the sad day should ever come when I no longer get to enjoy the blessed joy of being with the friends I love, I would want them to be happy for the times we did have rather than angry at the time we were never promised to be given.


And there it was...happy for the times we had, not the times we were never promised. A simple phrase...but a life-changing implication. Can one really choose to live with such a focus?

My friend...I miss you dearly, and I am certain that you miss me. But, we have so many memories...so many blessings...so many joys. So many points in our lives that were not there for either of us to claim as our rightful possessions, but which we were granted anyway.


So, I ask you, my friend, my beloved...what choice are you willing to make today? Will you be a prisoner, a victim, an unwilling conscript in the death march that is life? Or will you apply yourself to the days that you have been given? Will you strive to fill each with the warmth, love, dedication, passion, and LIFE that you can? Will you put off the things that you must do, will you put off happiness and joy? Or will you make each day a worthy final one? Which is better, I ask...a lifetime of hope in some future happiness, or a lifetime of wonderful last days? Be it one final day or thousands...I know where my choice lies, my friend.


Now, as I bid you one final goodbye, I beg that you consider my words carefully my friend. Do not let the root of bitterness take hold...do not allow yourself to waste a single one of your precious days on pointless pursuits. Be strong, be able, and be willing to live the life you have been granted...and make it count. Make each and every single one of those gifts we call days count, and enjoy a life of few regrets.


Goodbye, my friend, and I wish for you a lifetime of joy unparalleled,


The Old Fool


I wonder...do I have what it takes to change my perspective this much? I don't know, my friend...but I will try...Goodbye sweet friend...goodbye, and I hope that the next time we meet I will have given you more reasons to be proud than ashamed....

--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


Creative Commons License
Blog - Musings of an Old Fool by Juan Lopez is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at lopezj4141.blogspot.com.

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Friday, November 6, 2009

Ugh. Again.

Well, I've got a trip coming this weekend. And the feet are acting up again. It's not something to be done lightly, but I decided to take this poison preventively, and hope that I can stave off a few days of serious trouble.

But, today the news reminds me that whenever I feel I've had a bad day, I need to be ashamed that I even began to consider it to be so. God bless and comfort the families at Ft. Hood....

Good night.


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


Creative Commons License
Blog - Musings of an Old Fool by Juan Lopez is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at lopezj4141.blogspot.com.

-

Monday, October 19, 2009

Some days it's harder to not be frustrated than others

Today marks 17 days since the current bout of immobility kicked in. Not all days have I been thoroughly immobile, some of them I was able to get around with one or two canes. Others, I didn't get up off the couch - yes, the couch, because the bed was too uncomfortable.

It's times like these that I go back and read my own "pep talks" to myself, because it's not easy to remain frustration-free. For the first time in at least a couple of years, I had found myself being able to engage in some healthy activities that carried the hope of combining with my current medication regimen to possibly show some real improvements. After one week of feeling great - this new round kicks in. And sure, I'll get over it, and I'll get back on my feet...but the timing just sucked. I guess it's never a good time to have mind-numbing pain keep you up for all but one or two hours a night, but this seemed to be worse timing than normal.

One of the downers is that my long and checkered history with medications means that I have very, very limited options for dealing with these flare-ups. Ok, pharmaceutically, I really have only ONE option. And it's a toxic poison. yeah, they call it a medicine, but it's a medicine like chemo is a medicine - it just gets rid of the bad stuff faster than it would actually kill you. Here's a paraphrase what wikipedia has to say about this wonderful pharmaceutical option:

The drug's toxicity has been compared to arsenic poisoning: symptoms start 2 to 5 hours after the toxic dose has been ingested and include burning in the mouth and throat, fever,vomiting, diarrhea, abdominal pain and kidney failure. These symptoms may set in as many as 24 hours after the exposure. Onset of multiple-system organ failure may occur within 24 to 72 hours. This includes hypovolemic shock due to extreme vascular damage and fluid loss through the GI tract, which may result in death. Additionally, sufferers may experience kidney damage resulting in low urine output and bloody urine; low white blood cell counts (persisting for several days); anemia; muscular weakness; and respiratory failure. Recovery may begin within 6 to 8 days. There is no specific antidote, although various treatments do exist.:

What, pray tell might be the toxic dose? Well, actually, any dose. The stuff is so nasty, the instructions literally say: "take one every x hours until vomiting, nausea, and/or the other nasty symptoms kick in, and discontinue immediately". Most patients I know of, that means they get to take ONE. Last week there was a day where I had to take 3 in a 30 hour period.

Why do I clarify this? Well, because of how much grief it causes my parents when they know I'm here poisoning myself just to make some pain go away. Of all the things to happen, to add to their burden of worry is one of those things that just gets to me like few things ever do.

Anyway, there have been some pretty bright spots through the month so far, though. Wonderful times spent with friends...a serendipitous series of reversals of the immobility just in time to handle two events that lifted the spirit and made me grateful all over again for those in my life.

Still, some days, you just have to say it like it is. It sucks. It sucks, and I'm still going to get up tomorrow and see what else has to be done to move me on down the path towards graduation. But, I doubt it will suck any less. :)

Thanks for putting up with the rant. G'night all...


From: http://imgs.xkcd.com/comics/hallucinations.png




--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


Creative Commons License
Blog - Musings of an Old Fool by Juan Lopez is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at lopezj4141.blogspot.com.

-

Saturday, October 3, 2009

Random funny

From the folks at the cheezburger network, a variety of funny things to close out my night...

gary coleman and david hasselhoff
see more Lol Celebs



From: http://roflrazzi.com/2009/10/02/celebrity-pictures-coleman-hasselhoff-remembered-fondly


song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/09/30/song-chart-memes-computer-issue/


YES:
song chart memes
see more Funny Graphs

From: http://graphjam.com/2009/09/29/song-chart-memes-something-wrong/


The Girl and Boy Paradoxes, Explained:
song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/09/09/song-chart-memes-boy-paradox/


song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/09/03/song-chart-memes-girl-paradox/


Too true, too true.
song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/09/18/song-chart-memes-operating-systems/


Thank God.
song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/08/28/song-chart-memes-number-readers/


And that's why we engineers love them. :)
song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/08/27/mythbusters-method/


Yup.
song chart memes
see more Funny Graphs

From: http://graphjam.com/2009/08/21/song-chart-memes-last-words/


It's a Shrodinger's cat problem - you don't know whether it exists or not till you go looking for it, but the very action of looking for it causes the probability to collapse to ABSOLUTELY and there are ####'s of people who already are into that particular idea.
song chart meme
see more Funny Graphs



From: http://graphjam.com/2009/08/04/song-chart-memes-rule-34/


Sigh. Hope it goes better than this...
song chart memes
see more Funny Graphs



From: http://graphjam.com/2009/07/23/song-chart-memes-became-professor/


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


Creative Commons License
Blog - Musings of an Old Fool by Juan Lopez is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at lopezj4141.blogspot.com.

-

Thursday, August 13, 2009

Juxtaposed sentiments and a remix

There is a big part of me that is very, very, very happy and grateful that we seem to have struck on something that is working well for my brother, and possibly working for me. I'm losing weight, dropping dimensions, and have bloodwork that seems to finally be moving in the right direction. In 9 years, I had come to learn to not hope for anything like that...ever. The gratitude and thankfulness towards the Potter and his ever-turning wheel and plans is certainly a huge part of my daily life.

There is another part of me that is just very, very, very tired of feeling this way. I know I have no special right to feel this tired, worn down, or dispirited (especially when so many of those I know have to slog through worse), but I have to be honest with myself and admit that some days have simply seemed harder than they are worth. In fact, I feel kind of at odds with my newfound fondness of objectivist worldviews. The main reason I continue to push through is the number of people I do not want to let down, not because I feel much of any personal wish or desire to do so for my own sake anymore.

I am actually quite internally conflicted over this quandry. I need to have more than just "because I'd be letting others down" motivation driving me. I know this rationally and clearly. And yet, I am so very, very, very tired of feeling like Sisyphus over this whole health conundrum, and without that personal drive, when the goal is external, it does seem like a heavier rock rolling up a steeper slope on the days that the internal drive calls in sick.

When we discovered my brother was doing so well on the treatment, a MAJOR motivator for me just dropped out from under me. In the worst days in the past, I could always remind myself that I was not the only one counting on me making it through another round of trial and error testing/medicating. Then, when he started to respond so quickly, I dared to hope that perhaps I would follow along, albeing more slowly, in the recovery business.

Instead, I have become the weakest, most dependent, most unpredictable version of me there has ever been. There are days that I get in the car and almost immediately have to come home, realizing the trip to wal-mart or wherever now seems a bit much for the day. And then that very evening I can be feeling better than I have in a while. There's no predictability, no control, and only a great concern that I'll be stuck doing something when the next wave of sheer physical draining takes its toll. I have become wholly dependent on my medication - to an even greater degree than I ever did before. I used to think it was bad that the vitamin would lay me out in 2-4 days. Now, I have a window of maybe 2-3 hours with this combination of medications.

And yet, as I write this, I feel like a whiny punk. People with full-blown insulin-dependent diabetes have tighter schedules to their medications than I do, to name the more cotidian of the illnesses people around me suffer from on a daily basis. There are worse...much worse alternatives and possibilities.

That doesn't mean the weak, decrepid, decomposing human that I am doesn't feel these things, however. On nights like this, I really do miss so many of you whom I rarely or never get to see anymore. I can be thankful for the days in memory I do have of those times shared...and like the old man in that ballroom can take a few rounds down the dusty memories and rejoice in the opportunities I did have, and then look forwrard to those still to come.

For any of you that slog through my writing, you know that there are often repeated themes throughout...and today, I spent some time re-reading some of the things I'd written in the past, to feel a little better about today, and try to get some sleep...

Old blog remix:

These are the feelings I'm trying to re-capture from a couple of years ago...that I NEED to recapture...



How I've been feeling these past couple of weeks...



What I know I need to do again...


I miss you all, my cherished loved ones...this tired old fool misses you all so very much.



--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


*NOTE: I reserve the rights to all the original postings in this blog. Do not use without permission and/or full attribution.

-

Sunday, August 9, 2009

Frustrating Entrapments

This will simply be a venting session, no more no less. :)

*begin pressure release*

Well, I'm back from what in previous years would be considered a "short jaunt" of a trip. I went to Houston, and came back, but broke the trip into three parts, and even stayed overnight in Longview to rest before making it back to Ruston.

2-3 years ago, the me from then would have laughed at how difficult this seemed to the me now. I must confess a serious degree of frustration with myself. Driving is a relatively relaxed and easy form of travel, especially on the mostly empty interstates I frequent (at least empty compared to city traffic interstate runs or So.Cal., from whence I come). And yet, increasingly, it seems like driving anywhere is an obstacle to be overcome. A sheer relief and thankfulness upon arrival. Pulling over for extra rest stops just to give the tightness in the chest a chance to dissipate and a new wave of focus to take over.

It leaves me feeling quite trapped. In years past, with a vehicle at my disposal, I've always been able to feel like I could go where I needed and because I needed to. 18 hour-a-day road trips were tiring, but fun. I could get to the other side of the country and back again for a visit or a graduation. I could make a nightly 2-hour runt o New Orleans for a week because I was stationed 2 hours away for company business.

Etc, etc, etc. And now, the distances seem multiplied. I get that "long lens" effect from the movies where the hallway just seems to suddenly grow miles long.

Sure, I'm feeling much better than I was a few weeks ago, and I have a much better handle on m health. But to be perfectly honest, this "trapped" feeling is starting to get a little suffocating. I feel pincer moves on all fronts. I'm trapped by my dependence on the electricity to keep me alive and breathing at night. I am trapped by the dependence on a machine that I hope and pray does not break, because I wouldn't do well in the few days it might take to replace it. I'm trapped by the ever-tightening schedule around which I need to eat/take my medicine before I mess up the rest of my day from an imbalance that's harder and harder to correct in just a few minutes. I'm trapped by my dependence on access to a red liquid that wal-mart sometimes carries and sometimes does not, but which I need in ever-increasing doses if I want to feel like a normal human being without being tethered to the nearest bathroom.

Trapped by the need to not give up, because the moment I do, I fear I won't get back up (school, life, whatever). Trapped by the distance from so many loved ones, and trapped by the loss of love of so many distant ones. Trapped in this decayed and broken-down body. Trapped by my knowledge that I need to take these life lessons and turn them into opportunities for me to share and uplift others - though I'd much rather be sour and bitter instead.

*end vent*

And without the friends and loved ones I DO have, these feelings would be overwhelming, crippling, and paralyzing. Thank you for being there...

--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


*NOTE: I reserve the rights to all the original postings in this blog. Do not use without permission and/or full attribution.

-

Thursday, July 30, 2009

Success is a rare treat in this journey, but PTL!

Well, in all the 9 years we have been letting the white-robed beings who act like vampires around me exact their multiple-times-a-year toll from my veins, yesterday will be marked as a red-letter day.

For the first time in all this time, we have seen a reversal towards normal across the board. Every principal measure that for years has simply shown a steady decline as everything seemed to unwind with no way to truly prevent it has now shown between a little and much improvement. While all of my numbers are still quite unhealthy for an average adult, yesterday's work showed levels I haven't seen since 2004 on the worst measures, and since 2000 on the less pernicious ones.

I am very thankful this current line of treatment seems to be along the lines of the answers we have been looking for all these 9 years, and am even more thankful for the friendship, support, and prayers so many of you have supplied along the way to buoy me along. I'm especially thankful that I can leave my parents with that close-to-peace-of-mind news, and allow them to focus more on the many other people that need them so much on a daily basis.

My dear Potter...your clay...nothing more, and nothing less.

-A grateful Old Fool


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


*NOTE: I reserve the rights to all the original postings in this blog. Do not use without permission and/or full attribution.

-

Tuesday, July 28, 2009

Let's not do that again

So, yeah...I would like to avoid nights like this one again, at all costs.

Thanks to my wonderful, beautiful, beloved CPAP machine, I am able to sleep soundly after many years of having a very bad sleep problem. I've been on the CPAP machine for about two years now...heck, I depend on it to be able to sleep at all, and to make it through the night without a heart attack. :) My brother is in the same boat as I, only not quite so dependent.

However, one of the less pleasant side-effects my brother and I discovered is that our sleep is SO deep, we end up not moving very much in our sleep once we've drifted off courtesy of our beloved machines. This is generally not a problem, as most people can generally pick a comfortable position before drifting off to sleep. When we each first began learning to use our equipment, we quickly learned that a few positions seem comfortable when laying down, but can quickly degenerate into bad, bad uncomfortable - with a limb, usually a leg, going numb or being in pain from being ill-positioned.

Back at home I have body-length pillows I use to keep from rolling over or moving around much after I'm set for the night. Not so here. So, back to the original world-class freak-out now that I've intro'd it so heavily.

Apparently last night, while I was asleep, my back decided it had had just about all it could take in this one position, and I rolled forward in my sleep. This was not a good thing, as I rolled forward and onto my right arm in a very awkward position. And then, apparently I just slept for a very long time. Maybe 4 hours into being asleep, I woke up quite startled...and realized I was uncomfortably on top of my arm. I tried to move off of it, but I got NOTHING from my arm. So I rolled over, and when I stood up, to my horror, my arm was a deep, deep purple, and nothing but a dead limb. As I stood up, it swung limply in front of me with absolutely zero muscle response. I grasped the arm with my left hand, and I may as well been grabbing a giant sausage for as lively as it felt, as much of a dead weight as it was, and as unable to feel the grasping as I was.

Interestingly enough, this was not the freak-out moment for the night. :-) I managed to RELATIVELY calmly spend 10 minutes waking my arm back up and restoring circulation. I got the first bit of response to my shoulder after a minute, biceps after a couple of minutes, major muscle groups in general after 3, and finally finger control before 4 minutes were up.(big clock in the bedroom...good way to keep track). I then pumped my arm and hands to keep the circulation going, went to take some heart-safe aspirin and a small piece of fruit to accompany it into my empty stomach, and felt my arm nearly fully restored.

Then, the weird sensation began to spread from my arm on outward through my body, very slowly...across my chest, down my back, etc. I couldn't explain the tightening, oppressive, at times tingly, at other times painful sensation that was spreading from my shoulder outwards...and I hoped that it wasn't something like a bunch of clotted or Roleauxe'd blood from the no-circulation arm making it back into my system. Now, for having handled the previous paragraph's events in a measured and deliberate manner, I was surprisingly panicky about this sensation. World-class freak out, I suppose would describe how that felt. No yelling or flailing about or incoherent muttering or much of all that kind of stuff...but definitely an internal freak-out feeling.

On the BRIGHT side...I now have access to a home ECG monitoring kit, and my parents heard me up and about for the second half of my incident, came out to calm me down, and took my ECG. As opposed to my two triggered panic attacks in Ruston that led to needing to go get my heart checked, now that I have the medicine more balanced, there was nothing but a slightly elevated heart rate to show for this freak-out. So, trial-by-fire of the new balance of the medications, I suppose...and it seems to have worked.

If at all possible, I'd like to avoid this much testing of new medicine plans in the foreseeable future. :-)


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.


*NOTE: I reserve the rights to all the original postings in this blog. Do not use without permission and/or full attribution.

-

Tuesday, June 23, 2009

Ok, let's not do THAT again

So, in the aftermath of a long, ugly day, we think we've figured out what happened today.

Yesterday, I was taking the uber-toxic medicine, and surprisingly feeling no effects - I've been told that just about everyone feels the accompanying nausea and discomfort. I just felt i was lucky.

HA! I should know better by now. ;-)

Turns out a SECOND medicine I was temporarily on causes severe constipation. A LARGE percentage of the toxic pill had apparently NOT hit my system before this morning - when the second pill's effects wore off. Once everything was back to normal, I crashed pretty quickly.

Came close to suffering some catastrophic toxic shock, but I have some *pretty great friends* that took care of me and nursed me back from that ugly mess earlier today - instead I just felt like I'd swallowed just enough rat poison to NOT kill me, just make me wish i was dead. I'm now packed chock-full-o' antihystamines, and thinking of calling it a night...see if tomorrow is better. Well, it pretty much HAS to be, doesn't it? :)

Night...


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.
-

Monday, June 22, 2009

Briefly up....

So, I'm up for a little bit. Figured I'd share the amusing warning label on the current solution:

"Note, the compound is highly toxic. Take one dose every two hours until acute attack subsides or vomiting occurs, whichever comes first."

At least they are nice enough to remind me that if my body finally has enough of the toxic substance it has to resort to violent expulsion, that it's probably the "stopping point".

What is even sadder...I am glad to be taking it. In 6 years, it is the only thing that has been able to work one one of these acute episodes. The edema is about 50% lower after 4 doses, though the pain has not subsided in the least. But there are medicines one can take for the pain. So, as long as I don't really need my liver later, I can actually navigate these couple of days with much more control than ever before. :-)

Got to find the upside, after all. :)


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.
-

Sunday, June 21, 2009

25 days update

Well, the great news is that my brother is feeling extremely good in this treatment. He claims to feel 18 again, and chock full o' energy. He's hitting the gym every night after work, and not feeling drained or tired because of it.

I got my vitamin D results back, and as expected I came out astoundingly low. In fact, I was about 20% LOWER than my brother, and his doctor was astonished by his results. The recommendation was to supplement with at least 25-30x the recommended daily value every third day, and 4x the recommended daily value as a daily booster.

While at the 1 month mark, my brother is feeling amazing and is even visibly changing physically, I have no such news to report. About the only verified positive is that my blood pressure, which was not bad to begin with, is now "excellent". The second positive, unverified until the chance for new blood work, is that I believe the insulin response must be improving in my body, because I am no longer as tied to a fixed eating schedule before becoming hypoglycemic. We knew I was in much worse shape than my brother, and have no idea how much it is going to take for me to be able to improve at the same rate he might, but we're not going to push it.

I can feel the stuff working, but that hasn't necessarily been pleasant. Most of my muscles feel as if I had just finished an arduous workout, and my bones feel as if I was going through growing pains again. I have had a few painful episodes with my feet, but not to levels that I have faced before. I can feel the acceleration of my system. I am a little warmer, and can get overheated quickly. I suffer in the outdoors temperature a lot more. My heart rate can climb quickly if I am out and about doing anything that requires effort.

I went to a science museum some days ago, and interestingly enough, the side of my body I had applied the medication to that day was noticeably warmer on the FLIR...maybe by about 1/2 degree F.

I can feel the stress on my heart, but at least we're keeping the edema down for the time being, so I think that as long as I manage my exertions it is at least a calculated risk rather than an unacceptable one.

Thanks to all of you that have been keeping up. If there are any interesting/significant changes, I'll post. Otherwise, it will be boring "more of the same" posts. :) the only reason for this one was the change to full-dose (double my brother's) of the principal medicine, and the supercharged vitamin D.


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.
-

Sunday, June 7, 2009

First Week

So, the first week was rather unsurprising on the new treatment. I knew that I was starting out at a very safe, low dose, especially when considering it's the same low dose they gave my 100-lb lighter brother.

There have been no major side-effects as of yet, again, unsurprising with the low introductory dose. The only thing that has changed is that my body-wide neuropathy is back in full swing like it hasn't been in almost a year. I'm doing my best to stay off the painkillers, but some days I'm less successful than others.

I will continue on this low introductory dose for another week, and then probably step up the pace to a more full-fledged dose, where I would expect to see more of the typical side effects.

Thanks for those that have been keeping track and praying. :)

Update on my uncle - he has come out well from the surgeries, and have gotten a partial settlement from the responsible driver for the hospital bills, but are still in the legal process of getting the rest.


--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.
-

Monday, June 1, 2009

What doesn't kill you only makes you stronger

Monday morning will mark the beginning of the truest sense of the phrase in the title, at least insofar as my own life has been concerned for a while.

I will begin my treatment. It has equal chances of a great and positive outcome as it does of generating a more permanent final solution, so to speak. However, the negative outcome is more and more guaranteed each day that passes without my treating, so I am actually looking forward to making a positive decision with regards to my health. Even if the solution were to not spiral out of control, if it does not work it will certainly place me in a more precarious situation than I am currently, possibly accelerating the degeneration by a few months to years.

The negative will happen eventually if I don't slow this degeneration down, but there is a 50% chance that the positive will happen, and this will be a major step towards health...and at the moment I really like those odds - given that doing nothing is 100% guaranteed to end badly if given enough time.

On the bright side, my brother is responding VERY well to this treatment - so we know it is of benefit to him, though to what extent we won't know in time to predict my own. He did report the negative side effects that concern me, but his health has much more "wiggle room" around things like heart congestion and the like. However, I trust that we will be able to manage with the appropriate countermeasures, as long as we know what to expect.

I appreciate all your prayers thus far, and will keep everyone updated over the next few weeks. From what I can tell, the first month will be the most critical. If things are not looking dangerous after that time, I think I will be confident that we have passed the most dangerous phase.

Thanks to all who follow/care/pray. God bless you all, and I'll post updates as I have them. Granted, in light of my uncle (previous post) and what his whole family will have to go through, I am thankful at the small scale of my own problems - and that any radical changes in my life will not imperil the well-being of an entire family as his did. Please keep HIM in your prayers more than me...and especially his family,



--
The Old Fool

“If liberty means anything at all it means the right to tell people what they do not want to hear.” -George Orwell.
-

Thursday, May 14, 2009

Engfeh...bleh.

It's been a long day. It's been a bad day.

We're going to have a hard time getting hold of the treatment for me.

The malabsorption issues may be more widespread than a single vitamin as previously thought.

I've had a few cardiac events which other people may deem as scares in the past few days, and today is no better and no signs of it getting better.

It's just not a great day overall. At least music is a great outlet. And writing. :-) I've added something like 4000 words to things I'm working on in the past 24 hours...it helps.

And in addition to writing, I like being self-indulgent and re-reading some of my favorite apropos pieces I've written.

Some of these are:

Courage

Replay

Workshop

Sleepless



http://www.youtube.com/watch?v=NQCGeg7z5kM


http://www.youtube.com/watch?v=i9IixYR_p-4


http://www.youtube.com/watch?v=3dTo48hSLsw


http://www.youtube.com/watch?v=UhxXs6SOve8


http://www.youtube.com/watch?v=kjIPLqOT65w


http://www.youtube.com/watch?v=lEPq054fy2Y


http://www.youtube.com/watch?v=xVLWzluuCNU


http://www.youtube.com/watch?v=WJY-_lBCbk0

-

Tuesday, May 5, 2009

Decision

It was certainly a wild ride this last month, mostly of long and bitter disappointments and a waste of precious time. At the end of the month it felt like the main redeeming factor was the ability to spend some time with the family, which is always a plus.

However, it would not be completely fair to characterize the entire month as a complete waste of time. The very last day, something unexpected popped up as a potential avenue for treatment.

In fact, it was something that cropped up between the time I woke up in the morning for my plane flight back here and the time I finally made it into DFW.

I'm playing this one a little close to the chest, I know, but contrary to what my many postings here may indicate, there are things I don't actually share or publish about my health.

This treatment won't be without its severe risks. I got a sobering breakdown from a doctor today, and it will certainly not be as nearly innocuous as I had originally hoped. There is a little bit more than a small chance that the treatment itself will create congestive heart failure, or produce an overnight cardiac arrest by worsening the massively obstructive apnea my CPAP machine deals with on a daily basis.

There is definitely published evidence that in certain cases this solution has worked, and so far 8 years of medical records don't counterindicate me being one of those cases. They don't prove it WILL work, but they don't put me outside the bounds of it working either. There is also anecdotal evidence in my own life that this will produce some results. I've told someone before that they saved my life, or at least extended it, and if this works out, I don't think they'll ever believe how true those words ring. So, there is the chance...the chance...that it will be a major step towards a cure or at least a reversal of many of the worst insulin problems, and though the major risk factors are serious, they are commensurate to the potential benefit.

I have decided that this gamble is worth that chance. And one way or another, we're getting my brother a little bit closer to a solution for him. If we must discard this avenue and keep searching for new ones, might as well get that done sooner rather than later.

There is a secondary confirmation coming in this week as to whether this avenue of treatment may be something worth trying. Honestly, though, I believe I am going to pursue it whether or not the second green light hits. At the moment, there is not much else to be done, and I know I can't stay like this for much longer. I think it's only God's grace that I haven't had a major cardiac event or stroke thus far, and I'd like to do more to keep it that way. :- )

So, I would appreciate your prayers. Yes, that this works, but also for my family. I made this decision, but it affects them as well, and they are on board and supportive. Now, we need to convince at least one of the doctors to sign off on the treatment, and I will begin. Thankfully, this won't even require another trip like the one I just had.

So, this may be one of the last health updates in a while, because I don't expect to get my hands on this solution for another month or so, and won't be able to report on results for another month or two after that...but, as I mentioned before, prayers would be GREATLY appreciated.

Sunday, April 26, 2009

Recap of last day

So, I realize that I left it pretty cryptic at the last posting.

Truth is, there's not a whole lot left to tell. Basically had one last long day at the hospital. Got to talk to a VERY helpful doctor who explained much of the process to me and helped clarify many things for me - and helped me see how much of a dead end we were pursuing.

I was very thankful and blessed to get the opportunity to get INTO the hospital, as the waiting lists are long and getting longer. But the options there simply were not for me. Not to mention the time scales we're discussing were not even feasible. 2-3 years before I could get any actionable decisions from the hospital, and make forward progress.

My parents were crushed, to the point of some tears. This was one of the last, best hopes available within the world of socialized medicine at home. Without that opportunity, we have to rely on me being able to get myself graduated, employed, and on my own insurance plan again to begin the process of pursuing other treatment options. This trip had raised their hopes too high, and I was hurting for them at how low they were dashed. I'm ok, but I spent a couple of days with just a heavy heart thinking of how much this had hurt them.

A couple of good things came out of this - we were able to get a lot more bloodwork and testing done to continue building up the case file. I was given an invitation to come back to the hospital as a lecturer once I complete my Ph.D.

BEGIN RANT

In plain words, the doctor said that I would fare much better as a colleague than as a patient. She said doctors were not ready to explain themselves to a questioning patient, but they would readily hold in-depth sessions with a colleague. She said that basically all of their patients learn to just "trust" in their doctors and take their advice at face value, because they don't have the education to ask the right questions, and that my education and familiarity with my own case makes my doctors feel like I am an antagonist rather than a participant in my own care. This, because I ask questions, I request explanations for why we chose one treatment over another, and that I know when they are bluffing and making me do things "just because this is the way we do it HERE, not because it's a better choice". She said none of my doctors were willing to deal with a patient that could ask and smell the B.S. when requests for clarification were issued. But she said they'd be more than happy to do so with a COLLEAGUE.

This annoyed me quite a bit, because it goes back to a cultural problem I've had ever since I was a little kid. I abhor how much we hinge on our "titles" back home. People FREQUENTLY introduce themselves by their title and first/last names. "Ingeniero Lopez" would be one way I could politely introduce myself to people, "Lopez, engineer", and it would be written as "Ing. Juan M. Lopez" rather than "Sr. or Mr." Juan M. Lopez. People do this for their bachelor's degrees as well. It's called "degreed", so they introduce themselves as "Licensiado Lopez", for example, and would write it as Lic. Juan M. Lopez on any formal documentation. Of course, "Professor" and "Doctor" are more revered than "Engineer" Titles, but "Engineer" and "teacher" are more valued than "Degreed".

So, when you introduce yourself in this very TRADITIONAL manner, you are INFORMING people of the degree of respect with which you EXPECT them to address you. In Spanish there is a formal language and an informal language, and the titles demand the formality of the person to whom one just introduced oneself.

I have been able to claim the "lofty" title of engineer for years, and I always refuse. it annoys me to no end to DEMAND that kind of respect from people just because I say so. If they will respect me it is for who I am, not for what I TOLD them I am.

But, it bit me in the behind here. Once again, I did not use any of the "titles" I could have, and my doctors got all huffy that an "untitled" person felt "entitled" to ask questions. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR.

Screw it, though. I still refuse to use titles. I refuse to demand that someone respect me because I DEMAND it in my own introduction.

END RANT

Anyway. The program they were offering me was simply not a medically sound decision for me. The last doctor I interviewed admitted that it was one of the more dangerous and radical and irreversible measures out there, but that it was a "one size fits all" solution, and it would fix all the various problems the hospital dealt with when it came to obesity, so they focused on the most radical approach. Woe be to you if your problem warranted a more measured, deliberative approach, because only one is available.

I already have a malabsorption disease from the medicines they ordered. Now they want to induce a permanent broad-based malabsorption disease that will cause me more deficiencies than just vitamin B. I can't do it. The risks/quality of life issues simply did not manage to win me over to their column. But I dared question and I dared care about the decisions I was making about MY health, so I was not a good candidate for the social medicine hospital.

So be it.

Now, I am back in the states with no immediate plans to go seek any more treatment, and will probably have nothing new to report for quite a while.

Thank you all for caring, following up, wishing me well, and praying. I ask that you please keep my parents in your prayers. This has been awfully hard on them, and they are truly heartbroken to see another door slammed in the face of progress, especially one that had so much promise.

I should stop indulgently recapping my own previous writing, but this fits well:

Excerpt from Potter's Workshop:

Slowly, as if succumbing to the pressure of a suffocating weight, the Fool sinks to his knees. He reaches out to the Potter and cries out, bellowing with emotion but with a strangled whisper of volume.

The Potter rushes over, catching the Fool before that tired head reaches the dusty workshop tiles. "My Son, fruit of My Hands, I am here," whispers the Potter. "You are My design, My creation, My heart. Why do you flag and wax so morose?"

The Fool gathers himself, drinking in the strength that flows from his Potter. Recovering composure, he steadies his voice, and whispers, "This clay has worn out and worn fragile - brittle and thin. Though the soul was rediscovered through your latest design, robustness was not in Your plan."

"Your designs, always so perfect, what happened with mine? Was my soul so hidden, twisted, and scarred that a whole soul and whole vessel could not intertwine? Why do You...", the Fool drifts away, unable to finish the thought - unsure of the ending to the truncated question.

The Potter's eyes mist, His creation's sorrow His own. "My Son, why must you size yourself up by any mold or design but the one meant for you? Their tasks are not yours, your burdens your own. My design for you is ongoing, your purpose unfolding. Don't you trust Me, work of My own?"

The shamed Fool looks down, unable to meet his Potter's kind gaze. "Trust abounds, sweet Potter, but this thin clay seems untenable as I've run out of strength. Each day filled with pain, bleakness, and neverending fatigue."

At a whisper, saline rivulets down the Fool's craggy face, he continues, "The brightest beloveds you've allowed me, now merely a fond, distant memory. My closest two friends are the Night and my Potter. My work, my tears, my long nights to ponder, my trust of you, Potter...these are the things that keep me afloat."

"My Potter, though honored by the worth you have placed in my life and existence, I cry out 'Unworthy, unable!'. Please, dear Potter, I beg You, implore, arrogate - believe less in me and retire this vessel! Receive me back in Your workshop, a completed piece, purpose served. Please dear Potter, Your vessel does beg with its last ounce of strength!"

With this gasping cry, the Fool now collapses - his reservoir empty, his piece said, his pleas expended. He rests in his Potter's care.

"My Son, My Creation, My Handiwork - you are My design, My plan, My vessel. Your strength is not sufficient for My tasks, but on your strength alone you don't have to rely. My Child, My
Creature, My Clay, rest your head now, renew in My strength.", the Potter whispers.

Thursday, April 23, 2009

Eh.

I don't have the energy or the will to update right now.

We have hit a solid dead end today.

I am packed, and on the way to rest and then airport in the morning.

Thank you all for keeping up with me this long trip.

Wednesday, April 22, 2009

One last round

So, I have one las round of medical visits tomorrow. It is going to be a whirlwind.

There are some hints that it may not be a COMPLETE waste of time, though.

1) Ecocardiogram to rule out pulmonary hypertension. That would be a good thing to do.

2) New thyroid ultrasound. One can never have too many ultrasounds.

3) After my disastrous last visit, one of the leading doctors there (someone who's actually published a textbook and other book or two) decided I WAS interesting enough to warrant a second look. Then the doctor looked a bit more into my file and insisted on injecting herself into ALL my rounds of visits tomorrow, so she can play catch-up, as her interest has been thoroughly engaged by this case. However, until we actually get to talk with her, I'll reserve judgment on how much this will be helpful.

Now, I am off to bed, because it's 4:45 am up and at 'em for me.

Tuesday, April 21, 2009

Frustrated or unsurprised?

Still haven't figured out whether I'm frustrated or unsurprised. I am leaning towards unsurprised with a tinge of frustrated.

How did yesterday's round of discussions with RESEARCH doctors (at least supposed to be) go? Paraphrased as follows:

Docs: Well, you really should get back on that medication, it's truly the only thing left on the market for you to take at the moment to help you in any way.

Me: I've been on every form of that medication that is currently offered, and now that medication causes me SEVERE trouble, pain, internal bleeding (forheavenssakelistentowhatIamsaying - internal dialogue)

Docs: Yes, we know, but discomfort is no small price to pay for being on the ONLY thing left that can help you.

Me: INTERNAL BLEEDING. This is acceptable?

Docs: That has got to be caused by something else. You probably have a food allergy or gastric problem we haven't discovered yet.

Me: Um. But:
If Juan NOT taking the medicine AND on B12 -> Juan OK.
If Juan NOT on B12 OR taking the medicine -> Juan VERY NOT OK.
Finally, If Juan taking medicine AND B12 -> Juan VERY NOT OK.
All other foods/medications -> Juan OK.
Seems like one common link.

Docs: The people who are that seriously affected by this medicine are WAAAAAAAAAAAAAY too rare for you to be one of them. You'd be a near anomaly here in our hospital. Because it's such a small statistical sample, you must not be one of them.

Me: (internal dialogue - unutterable grumbings about statistical training for someone being in dire need - hypothesis testing 101 at least) Ok, so on to other situations, what about the pituitary link?

Docs: We can rule that right out. First of all, we've never had a patient at YOUR weight have a pituitary problem (unspoken reason: it's from stuffing their fattie faces with cake and candy, lardass. Also, we'll conveniently overlook that you're 6" taller than our average patient in the room of 1000 patients you could visually survey, and that your muscle mass proportion is also a large part of your weight due to the steroid effect of the insulin).

Docs: Also, if it was even CLOSELY related to the pituitary issues, the majority of your mass would be in your abdomen, not in your arms/legs. No, your arms and legs are not skinny. OK, so distally they really have no fat, but that doesn't mean they're skinny. Your wrist is still much larger than mine. Yes, yes, it's all bone at the wrist, but it's still much bigger.

Me: (sigh) OK, so, what else?

Docs: Well, we need the psychologist to interview you and find out if you're truly not a compulsive overeater, and then send you on to the nutritionist.

(couple hours later)

Docs: Ok, well, the psychologist doesn't think you're a compulsive overeater. However, the nutritionist has decided on a very healthy meal plan for you that on its OWN should have you losing weight even with a sedentary lifestyle.

Me: Um. The plan the nutritionist suggested is 100-300 calories more than what I might eat on a normal day anyway. How will eating the same, or a bit more, HELP me?

Docs: (unspoken: Well, fattie mcFatcheeks, you're probably under-reporting how much you actually stuff your face, and you're a liar about it, regardless of what the shrink says) Well, that's because you haven't tried OUR diet. The way we organize your carb/lipid/protein balance will be what makes the TRUE difference.

Me: The plan asks me to eat 4-5 times a day. Will that not raise my average insulin level on any given day, making the steroid effect worse?

Docs: Not if you follow our diet and keep to the calories we've limited you to.

Me: (Grumble grumble grumble). Sounds great, I'll get RIGHT on it.

-------------------

More later, but it's now 10:45pm, and I have one more oral surgery to get to...

YAAAAAAAAAAAAAAAAAAY. :)

Saturday, April 18, 2009

On top of everything

Oral surgery set for today. Possibly root canal.

Fun, fun fun.

The vitamin B tests were no fun. Ended up with internal bleeding for nearly 24 hours. Now I’m back on my blessed meds…very thankful.

Off to surgery, may not be coherent rest of the afternoon.

------------------------------------------------------------

Ok, so this did NOT send before I left, so here’s the update…

The doctor came within 5mm of having to perform a full-on root canal. Instead he took it VERY slowly and cut it down to a VERY thin shell of bone around the nerve. I have a triple dose of anesthetic in my mouth at the moment that allowed him to do that without me punching the nearest person. Then he covered it all again, and I will get a proper crown on it later in the week. For now there is a temporary resin in place while the crown is made.

Right now I still have a lot of anesthetic, so I am not sure how much pain it will be…he told me to be prepared for a surprising amount. Yaaaaay. :- ) But, I’m taking preventative medication to hopefully attenuate some of that.l

Apparently one side of my mouth, and strangely only one side, on the side that I SHOULD be the most brushed because my right-handedness will favor it, there is a severe serial decalcification. My teeth have just grown soft in some places. This one was the worst.

Don’t know if it was the serious dietary problems I had for a couple of years, but it certainly is weird how localized to that one row of teeth on one side of the mouth ALL my problems are.

Anyway, that’s it…for now. :)