I tell kids about the "pre-ethernet days" at LU, playing Warcraft I over dialup and Duke Nukem 3D, and the looks I get make me feel like the dude in the last panel.
Young punks don't know how GOOD they've got it. :- )
Saturday, February 28, 2009
ROTFLOL!
I tell kids about the "pre-ethernet days" at LU, playing Warcraft I over dialup and Duke Nukem 3D, and the looks I get make me feel like the dude in the last panel.
Friday, February 27, 2009
Wednesday, February 25, 2009
Bottling
I still have a hard time getting over the fact that people pay more for a gallon of water than it cost to buy a gallon of gas at it's peak in the last year or so, and yet they found the value in said water, but howled at the gas. Starbucks is even pushing water bottles that are meant to make you feel guilty about NOT buying them - Ethos water, buy it or money will not get to go to Africa to help people get good TAP water. How...ironic? I don't even know the right word. I'd also like to know how all of these people feel about the sheer volume of OIL-based plastics that are going into LANDFILLS because for some reason the tap water at home is not nearly as good as the tap water that the bottling company used to put in their product. If they are lucky, SOME kind of filtering will have occurred. Basically, the same kind of filtering you could get with a home Pur system or something similar, but with none of the landfill. I'm no hippie, but I'm always amused when I see the enviro-vegan freaks sucking down those healthy waters because of course they would never drink something like a calorie-filled death-accelerating liquid.
Saturday, February 21, 2009
Can't decide...
Am I more Rat or more Dogbert...
But, whichever I may be, this Rat moment is awesome:
Congressional excesses
http://www.usatoday.com/news/washington/2009-02-19-fundraising_N.htm
Grrrrrrrrrrrrrrrrrrrrrrrrr
Grrrrrrrrrrrrrrrrrrrrrrrrr
Friday, February 20, 2009
Great discussion on M.E. violence
February 20, 2009
The Middle East: Mired in a Culture of Hatred
A Palestinian presenter at Hamas Al-Aqsa Television asks a little girl on a program for kids, "What do you want to become when you grow up?" The girl replies, "I want to become a mujahida [fighter]. I want to liberate Palestine. I want to throw all the Jews out of beloved Palestine. But before I die and join the Palestinian martyrs in paradise, I want to kill as many Israelis as possible like Reem Riyashi."
This is the kind of culture Hamas TV is spreading around among young Palestinians and other Arabs in the region. Hamas has its own satellite TV channel, radio station and newspapers and has used them to garner political support during its power struggle with Fatah.
Back in 2007, Hamas's Al-Aqsa TV aired a weekly show featuring a Mickey Mouse look-alike who urged children to support armed resistance against Israel. The character was beaten to death in the show's final episode by a character portraying an Israeli. The Hamas media effort is bankrolled by its leader in exile, Khaled Mashaal, who sends suitcases of cash, filled with money from Saudi Arabia, Iran, and Syria, which are smuggled into Gaza through tunnels from Egypt.
Secular and moderate Palestinians are appalled by the extremist propaganda of Hamas TV. Iyad Barghouthi, the director of the Ramallah Human Rights Center, says Al-Aqsa TV is a disturbing milestone in the rise of Islamist forces. Hamas's practices are reminiscent of those of the Taliban, he said. Barghouthi told Der Spiegel on-line, "Al-Aqsa TV is not only encouraging violence, it is also spreading fanatic Islamism and racism."
Hamas defied widespread criticism among Palestinians for using a young mother as a suicide bomber and even published photographs of her and her two small children, posing with weapons. Reem Riyashi, 22, blew herself up in 2004 and killed four Israelis at a Gaza border crossing after faking a disability to bypass a security check.
The anti-Israel media landscape throughout the Arab world is no better. In particular, the Syrian, the Saudi, and theEgyptian media are hawkish and propagandistic. Fair and objective analysis and information are non-existent.
The Syrian Minister of Tourism, Saadalla Agha al-Qalaa, told the newspaper Tishreen: "The Zionists are spreading bad propaganda about Syria to prevent tourists from visiting our country." That is apparently the main reason why few tourists, especially Westerners, come to Syria to spend theirholidays, rather than the bad services which the country offers tourists. When I was in Damascus in 2006, I watched how tourists had to wait at least an hour before theirpassports were processed at the airport police control. There are only two categories of hotels: either first class or no class at all.
The Ba'ath regime is not interested in tourism. Tourists could infect the local population with ideas about democracy and human rights. Tourists would also tell the Syrians another story about the "decadent" and "unfair" West.
When I visited the southwestern border of Syria with Israel several years ago, I told my companion, a member of the Ba'ath party, "Look how green the Israeli side of the Golan Heights is." He interrupted, "It is all propaganda. With the help of the Americans, the Israelis have made it green, just to show off." I countered, "Why don't you allow the locals who were displaced during the 1973 war to return to their homes and make this part of Syria also green?" He responded, "It's dangerous. The Israelis could attack us any time."
Not just the media blame Israel for all the problems the Arab world has. School text books in all Arab countries depict an aggressive image of Israel. The gist of this image goes like this: Israel is an alien limb in the heart of the Arab nation. Palestine must be liberated from the Zionists as Saladin liberated Jerusalem from the Crusaders.
The culture of hatred must stop. Western governments must pressure Arab countries to introduce genuine freedom of speech, i.e., free media. Arab journalists and writers who deliver balanced articles on the Arab-Israeli conflict are banned from publishing. Arab regimes are suspicious of these people and, more often than not, they are arbitrarily put behind bars and accused of spying for the arch enemy, Israel.
I am one of those who have tried to publish articles in the Arab press about the Arab-Israeli conflict telling readers that the image of Israel as presented in the belligerent Arab discourse is distorted and fabricated. I have also stressed that if the Arab countries were as democratic as Israel, the conflict would disappear, and Israelis and Arabs would live in peace, side by side. If Arabs were objectively informed, they would choose to coexist with their Israeli neighbors. Ethnic and religious minorities are integrated in Israeli society and enjoy the same political rights as Jews. Muslim and Christian Arabs, for example, sit in the Knesset and say whatever they want and a Muslim Arab is a cabinet minister.
My articles have never been published. Arabs are not allowed to know the truth.
Western governments have to re-educate, at least, their Arab allies, as the Allies did with the Germans after World War II. The war on terror does not make any sense unless the root causes of extremism are uprooted in the media and in the schools.
FamilySecurityMatters.org Contributing Editor Dr. Sami Alrabaa, an ex-Muslim, is a professor of Sociology and an Arab-Muslim culture specialist. Before moving to Germany he taught at Kuwait University, King Saud University, and Michigan State University. He also writes for theJerusalem Post.
Thursday, February 19, 2009
Don't know that many ever move past the 1st year stage
http://www.wulffmorgenthaler.com/striphandler.ashx?stripid=44277225-dff5-47c5-91a4-4330b14d4457
Card-check
http://townhall.com/columnists/AllisonKasic/2009/02/18/the_fight_over_workplace_democracy
Unions are long past their prime in this country, and I believe card-check would be the single greatest act of destroying employee freedom in a long time.
Wednesday, February 18, 2009
Reporting on Science
http://www.dailymail.co.uk/news/worldnews/article-1148611/Drinking-just-glass-wine-day-INCREASE-risk-cancer-168--finds-shock-new-study.html
This is what amuses me about scientific reporting to the lay masses. The presumption of clear cause-effect. We have correlations, but the correlations are not explanations of underlying mechanisms. Years ago it was a correlation between heart HEALTH and red wine, so it was assumed by the lay masses that a little red wine must therefore be great for you. Now there is a correlation between alcohols and cancer.
However, it is IMPOSSIBLE to isolate the mechanism due to the way the science was performed - these are large studies of populations, and each individual in that study has added more nuisance variables to their own lifestyle than could ever be rigorously accounted for in the science. Correlations are not causes, they are simply that - correlations. RISK increases, not direct cause and effect.
Note, when I say IMPOSSIBLE, I mean from within the study and methodology. Of course mechanisms can be isolated with protracted direct studies, but this is not the way this kind of stuff is being done - it is more of a broad survey of behaviors and trying to isolate behaviors and health from these cross-sections of populations.
Tuesday, February 17, 2009
Now we can all get an A...
http://townhall.com/columnists/RogerSchlesinger/20...
Truly outrageous-that this whole 1000+ page bill was crammed through without being read by those signing for it. I would support a constitutional amendment requiring, on penalty of horrors t.b.d., that all bills be thoroughly read by any and all folks voting on them, from the president on down to the representatives. NO EXECUTIVE SUMMARIES!
Merely?
Merely An Object Lesson, fate's marionette -
Is this the only, the final kismet?
Serving one purpose, one mission,
A Warning Signpost, without volition?
The spirit, filled with will,
Body increasingly flags towards nil.
Daily more turns at life's capstan,
Ever climbing Sysyphus' mountain.
The sins and faults abounded,
But consequences were not absconded.
Price paid with willing clarity,
Betwixt wrongdoing and cost - parity.
Yet the plaintive thoughts plead,
Is there yet a chance to succeed?
Can the Lesson be more than a sign?
Or is this not in the Potter's design?
Sign pleads, to Potter's mercy procure,
Beg it be given the will to endure.
But beyond mere endurance, a hope -
A chance to do more in life than cope.
An opportunity to thrive, and grow;
Actively live, not go with the flow.
Will the Potter this great mercy grant,
Towards the Sign this grace decant?
The answer unknown and slow to come,
Daily fighting the urge to go numb.
The Sign continues on the daily routine,
Whatever the answer, presenting mien.
http://www.youtube.com/watch?v=iVYTabWaSHI
http://www.youtube.com/watch?v=nxpblnsJEWM
http://www.youtube.com/watch?v=FAPtTS0TYtU
http://www.youtube.com/watch?v=SsK90GWBVLY
http://www.youtube.com/watch?v=CtQjMSfBs90
http://www.youtube.com/watch?v=LthAj_xUkvo
http://www.youtube.com/watch?v=dxNX_PRqhCQ
http://www.youtube.com/watch?v=ftWx0dSRrtM
http://www.youtube.com/watch?v=MtfIv0vIG8I
http://www.youtube.com/watch?v=YJ5_du_FlZc
http://www.youtube.com/watch?v=9sDnasZvLA4
Rainy day
Cold and rainy outside...the mind wanders.
Having one of those nights when it hurts to even breathe, let alone settle down and try to sleep...
At least my wanderings are cross-cultural and biglot.
http://www.youtube.com/watch?v=kKwgaYn-MfI
http://www.youtube.com/watch?v=804UJbHY_aY
http://www.youtube.com/watch?v=O1RMFtbzy_c
http://www.youtube.com/watch?v=Yj51nEyRuN8
http://www.youtube.com/watch?v=Q32VtXaX0fw
http://www.youtube.com/watch?v=o96DcZoXSFU
http://www.youtube.com/watch?v=PSCw-B5mZjw
http://www.youtube.com/watch?v=AKGpZuadMsA
http://www.youtube.com/watch?v=CKHilrXR3VU
http://www.youtube.com/watch?v=DoTUIe1-2fo
http://www.youtube.com/watch?v=3ztm3-OsMwM
It's just been one of those weeks
For all of you out there who graciously keep track of me, I just wanted to say thanks.
Without your prayers, friendship, support, and love, it is most certain that I would not be as held together as I manage to portray most days.
My parents have certainly born the psychological brunt of all of these scenarios, worrying about their children in ways I cannot begin to personally understand yet. I continue to implore that you all keep THEM in your thoughts and prayers much more than you do me.
This has indeed been just one of those weeks, and it's only Tuesday! :- )
It seems that good news rarely comes unaccompanied these days, always a yang to any yin that comes this way. This new vitamin experiment has been progressing remarkably well.
The GOOD news:
-It is increasingly unlikely that I have something like celiac sprue, given that my tolerance for gluten products is slowly increasing as my vitamin B builds back up in my system.
-My ability to handle vegetables is increasing, and in the next couple of weeks I am going to try fruits and then salads. I miss salads in a way I didn't know was possible to miss healthy foods. :- )
-I have not had so many consecutive days without serious digestive troubles in longer than I care to remember.
-I am possibly correcting an imbalance problem before it got out of hand and severely destructive/deadly.
The Yang:
-I have less of a severe malabsorption issue...so now my hyperHyperHYPERinsulin is able to go back to what it does best...telling my body to store every last little calorie I intake as fat, without regard to diet or true need. After managing to relatively plateau (compared to other years) for a significant time, I am again steadily gaining weight. This is not a good change, as my heart is already at risk, and I'm just loading it down even more. Considering how much it hurts to move for very long, this is a compounding problem.
-If this vitamin B thing holds up, then it will be confirmation that my ability to absorb the vitamin was permanently inhibited by the medication I was once on. The only medication that the doctors believed had a prayer of helping to reduce my insulin problem. Going back on the medication would be increasingly inadvisable. Also, there would be no guarantee that my level of malabsorption of vitamin B would remain steady. Supplements may not work well forever.
-The pain in my hands and lower back has not improved. It continues to hurt like hell to walk around or move for very long. I generally keep my outings to one a day if I can at all help it, and I try to maximize what I do on that outing. When I am involved in teaching/lab work, at least I have the chance to sit in chairs from time to time so as to be able to prolong the single outing as long as necessary. I'm finding it hard to find the will and energy to face this every day.
Needless to say, the strong desire to become a hermit, never leave my hidey-hole, and never have to face myself in a mirror, never have to ignore the looks of others as they wonder how many quintuple bacon cheeseburgers I must wolf down in a day to look like I do, or not be confronted with my own inability to do even the simplest things at levels of stamina I had only a few years ago. The only reason I keep going any day is that I'm afraid if I stop I won't ever find the stamina to start up again. And I have to be honest that this is certainly not the kind of place I need to be.
I have grown accustomed to being the source of advice, comfort, and succor to many of my friends, but these days I seem to have been able to do none of the above, not for lack of wanting or trying. I feel useless to them, unable to contribute more positively to their lives, and this is a bitter pill to swallow.
Not everything seems so glum, though: every time I get the opportunity to teach or tutor, I am reminded of how grateful I am to be doing what I do these days. Whenever I delve into the research or teaching, I feel all that sluggishness disappear, because all I need is my mind and the ability to express myself.
Every time I speak with my parents, I get the opportunity to remind them of how much I love them, and how grateful I am for all that they did for us kids throughout our lives. I still have the opportunity to do so, when many of my friends do not.
After years of bitterness, recrimination, and generalized soul malaise, I got the opportunity to love purely and unconditionally someone who was WAY too good for me. While that joy and blessing may not be here with me anymore, the time she was here physically FELT like a temporary reprieve on all this degeneration simply from the joy of everyday life and living. To feel like that again was a gift I could NEVER have deserved, tried hard enough to earn, or done enough to repay. It's been a year and a half since that blessing has been next to me, but it still lingers in the daily memories and continued friendship.
Even though there are days when I fondly recall what it was like to be a well-funded EMPLOYED engineer, I have gotten the opportunity to pursue something that in the past seemed an unlikely dream. Few people get these opportunities in life.
I'm more blessed than I deserve, but it's weeks like these when I have to go back and remind myself of this...because when you're alone with your pain and your thoughts, the brooding always seems to have an edge over the joy.
Thanks for listening, praying, and putting up with me, dear friends. You make it all just that much easier to face every day.
Hurts so good
Ok, well to be honest, it does not hurt so good. In fact, it hurts so bad. the worst pain I have had in 2008. So buzzed on painkillers that it's finally tolerable, but it's definitely grounded me for the night.
On the "so good" front, well, it seems to be further confirmation that the vitamin regimen is working on the things it should be working on. Now that I am able to actually absorb food I digest, that stuff that in the last year has not been absorbed to contribute to the acute gout pain is finally getting back into my system. Proof positive: I have not had a truly SEVERE episode since January...that's almost a whole year, and the LONGEST I ever went without a severe episode.
As I mentioned before, though...this becomes a problem because my three-legged stool of disorders is no longer 3 legs...and 2 is no way to balance.
So, now it's time to begin to figure out what all this will mean.
At the moment, no clue how I'm going to balance on 2 legs rather than 3. I'm sure something will come to mind eventually...
Health update - Vitamin B12 is GREAT for you!
And if you don't have them, it can be a bad time indeed!
Ah, well, it seems like it's time for another Zaney Report...(obscure comedian Bob Zaney reference...sorry. :0) )
Juan/Nacho's health. A thing of mystery. An object of wonderment. A source of amazement. A true sideshow of medicine.
Geez...where did all this sarcasm come from today? Anyway, I am in the middle of a new dietary experiment, and as usual, those are never very fun.
However, this experiment has the potential to yield an actionable answer with regard to one of the many mysteries surrounding this inscrutable thing called my health.
For a while now we have been worried about: rheumatoid/autoimmune problems because of a plethora of new symptoms that we were simply unable to explain with other means.
Recently, however, we spent a little more time dissecting the similarities and differences between my brother and myself, to try to elucidate any hidden patterns emerging between our similarities/dissimilarities.
One of the things that emerged is that while the insulin resistance and weight problem that derives from said resistance has been dead-on as far as following the same progression of pathology, some of the "icing on the cake" additional ailments have not struck him nearly as acutely over the years.
Principally, my brother has not had a large problem with gout, joint pain, extremities numbness, rheumatic-like symptoms, constant digestive problems, or progressing anemia and abnormal red blood cells.
If the root of our problem is the same, and progressing the same, why have the ancillary things not developed in my brother to the same extent that they have in me? He has experienced acute episodes of these symptoms, without having them slip into a chronic pathway.
This led to analyzing the differences in diet and medication...and lo and behold, the first piece of "good" news we have had in a while.
My brother ended up many, many times more sensitive to a medicine used to control the insulin problem, and he was unable to remain on it for very long. Meanwhile, I was kept on extremely high doses combined with other medications, for years.
One of the side-effects of this medicine is the possible damage to the B12 absorption mechanisms in the gut.
In some people, who take the medicine long enough without relizing this has happened, the damage can be catastrophic and irreversible.
Non-dangerously low B12 can still manifest symptoms (* by the ones I have experienced for at least 6 months):
*Pain/Numbness in the joints
*Nerve damage
*Pain in the lower back due to this nerve damage
*An altered gait, usually due from the pain in the lower back during walking
*Strong intestinal problems
*Depression
*Progressing anemia
*Enlargement of red blood cells/abnormally shaped cells
Loss of balance (then again, who knows, I haven't been doing enough things that require fine balance for me to know for sure)
Seeing a pattern?
So, now I have been on a B12 replacement regimen for a little over a week, and the results are promising.
First of all, I have begun to experience gouty-like pain again. I haven't had a gout-like attack in 11 months, and one of the side-effects of replacing B12 in a system that has gotten very low on B12 is the possible onset of gout. Apparently I need more supplements like calcium in my diet. The other possible effect is the onset of thrombi...but I have no good way to check for that, so let's just hope we can ignore that possibility. :- )
Secondly, my stomach has been doing much better - when I do the vitamin regimen in a certain way. If I take my vitamins in the morning along with a VERY light breakfast (juice and a muffin or cereal bar), then I tend to do much, much better the rest of the day when it comes to my digestive problems. It's still not perfect, but then again, it's only been a little over a week.
A control experiment had me taking my vitamins AFTER a principal meal in the morning or in the afternoon. The more meals I took before I "primed" my gut with B12, the worse it was...in fact, it was almost worse than taking no vitamins at all. I tasted blood for an entire day when I did those. There is some limited evidence that I bleed internally during my really really bad days of digestion.
So, after another month, we'll be able to have a better idea of whether this B12 idea will pan out.
If it is a B12 problem caused by my medication, a few questions will remain:
Is this really permanent damage now? If it is damaged permanently, will it remain static and be able to be controlled with B12 supplements, or will it get progressively worse? Is there something that can be done to reverse the damage?
Once again, thanks to all of you who are praying - please pray for my parents more than you do for me. This has all been much harder on them than it has on me, and they are wonderful people who need to be able to feel God's comfort as they continue their awesome work in Mexico.
Stay tuned...same channel, maybe...at some arbitrary time in the future...by some random blogger who may or may not be me...for additional updates on "Nacho's Endless Medical Mysteries!"
More random thoughts and articles
Dilbert Daily Strip: 2008-11-20
http://www.dilbert.com/strips/comic/2008-11-20/
Ah, the bane of engineers and techies everywhere. :-)
The Other Deficit
Definitely worth the read regarding today's dearth of quality in educational standards and results.
Growing Up - Excellent little article from BBC:
What's so great about being a grown-up?
http://www.msplinks.com/MDFodHRwOi8vbmV3cy5iYmMuY28udWsvMi9oaS91a19uZXdzL21hZ2F6aW5lLzc3MzkyNjIuc3Rt
Great little philosophy article
Four philosophical questions to make your brain hurt
http://www.msplinks.com/MDFodHRwOi8vbmV3cy5iYmMuY28udWsvMi9oaS91a19uZXdzL21hZ2F6aW5lLzc3Mzk0OTMuc3Rt
Source: news.bbc.co.uk
I enjoy reading things like this - especially the discussions that can be had. I like how he sums it up at the end: it's about finding the flaw in the arguments that tells us a lot about our own worldviews.
Veteran's day 2008
This is a Canadian comic that is normally dedicated to technology jokes, but they did an awesome veteran's day run.
God bless all of you vets out there.
Best to view them in order:
http://www.userfriendly.org/cartoons/archives/08nov/uf012110.gif
http://www.userfriendly.org/cartoons/archives/08nov/uf012111.gif
http://www.userfriendly.org/cartoons/archives/08nov/uf012112.gif
http://www.userfriendly.org/cartoons/archives/08nov/uf012113.gif
http://www.userfriendly.org/cartoons/archives/08nov/uf012114.gif
http://www.userfriendly.org/cartoons/archives/08nov/uf012115.gif
My own experiences in socialized medicine
First of all, thanks to all who have been praying and keeping tabs on me while I have been shortly away.
And shortly away it was. I ended up traveling each and every day of this last week, only to not get nearly as much done as I would have liked.
A little background on why I had to travel: when I decided to leave my cushy engineering job, I left behind the guaranteed insurance that comes with it. This means that obtaining my own insurance, given my current situation, is more than prohibitively expensive. Therefore, I am forced to remain as one of the many uninsured in the US. Instead, I take advantage of the really good prices and excellent doctors in our private healthcare system in Mexico. Many of the doctors I have seen there over the years are fellows at US hospitals with name recognition like the Mayo clinic and Johns Hopkins. However, after all these years we have pretty much scraped the barrel bottom as far as options are concerned. In the end, my private doctors decided that my best option was going to be to enroll in the national healthcare system's most prestigious research/teaching hospitals to deal with the cutting edge specialists. The downside is that it is in the national healthcare system, and thus is a part of Mexico's socialized medicine.
The process is a mind-boggling example of when the government puts itself in charge of anything - bloated bureaucracy.
To enroll, you must be referred by a doctor recognized by the center, for a condition that you have no recourse outside of the center to treat.
Upon the referral, you apply for an appointment to have your enrollment status evaluated. This appointment is anywhere from 3 weeks to 4 months from the date of the first referral.
When you arrive for the enrollment evaluation, you have to present your referral at the door to the security guards, because they control the number of people allowed in. Only one person is allowed to accompany the patient. It turns out that's a good thing, because for any of the waiting areas you will be dealing with 200-300 people, all lining up for the various steps in the hospital enrollment and evaluation processes, and that is in multiple waiting rooms.
You get inside, and are directed to one building, where you dutifully wait for about 30 minutes for a secretary who verifies who you are and that you do indeed have an appointment for today. That is her sole purpose in this process, she hands you the paperwork you will need throughout the next steps, and sends you to another building, second floor for socioeconomic evaluation.
Because this is a socialized medicine hospital, they help everyone "according to their need" and charge you "according to your means". So, a social worker has to evaluate your income, expenses, distance you live from the hospital, etc. You turn in the paperwork to the desk, and then go wait with about 50 people for them to call you in to the socioeconomic interviews.
For other people, the interview process may actually have had some meaning, but for me, it was of little worth. I had gone to great pains to get all the documentation they wanted (proofs, receipts, etc). Turns out that since I have to come from the hospital from outside of the country, they have a standard slot that they designate you on the socioeconomic scale. This is a bureaucratic designation, and in no way reflects your means. So, even though I am a "poor" college student, I have to pay at the midline level...the thought process is that if you have money to come here from outside the border, you have money to pay at least half price. Granted, it's VERY reasonable prices (27 bucks to visit a specialist, 300 bucks for about 10 lab tests), but they are only about 1/2 the price of the private hospital costs in Mexico.
After your interview, you are assigned a patient number and a pay level (if they decide you get accepted at the socioeconomic interview).
With this number, you go back to another waiting room, and wait to get called by a doctor to take your original medical history. This history is not complete, but meant only to open your patient file. The doctor handwrites all this stuff down, it will be typed up by med students later into the computer system...but the doctors will always work with a hardcopy. The files get HUGE.
You leave the doctor's office after the medical history, and go back to the waiting room. Eventually, a doctor (usually the same one, now focusing on step 2 of the process) will call you again, and discuss your medical history, and your current problem, and what research/medical teams will probably want to see you, and then writes orders for preliminary lab work and initial visits to the specialist's teams and researchers.
Then you go back outside, take a number, and wait to be called into the scheduler's lines.
You get one of 10 booths, and eventually get up to the lady to schedule your next steps. They try to schedule your lab work 1-3 week ahead of your team visits.
Unfortunately, the average visit is at least 2 months away. In my case, I was unable to get the visits lined up at the right time, so we found the nearest date when I could do all the lab work and all the research visits in the same 3 weeks. That was in APRIL. This is NOVEMBER. So, after a July referral to the research hospital, I may actually get someone to LOOK at my blood work and results in APRIL - 9 months.
The doctors I am seeing are great at what they do, I was VERY pleased with the doctor who has taken over my case, but they simply have no time to manage as many patients as the state asks them to see...and the problem is confounded byh the complications brought about by so much burdensome overhead (see description above).
On to what was actually discussed:
I was actually quite pleased that this doctor has not yet immediately ruled out any possibilities. All but the most recent two (who referred me to this center), have made snap judgments in the first visit as to what is and isn't possible in my case. With 7-8 years of no successes, it is good to see people that are going to want to do a thorough job before ruling anything out.
Unfortunately, I will probably take a very long time before I get any immediate relief or help. This is not exactly the best of news, because the doctor does believe that I now am running a constant risk of one form of cardiac failure or another.
Coupled with my family history, he is also the first one to have brought up the possibility of a few very specific genetic disorders producing a variety of hormone resistances in the endocrine system - made even more likely by my brother's suffering many of the same developmental stages of this pathology. He told us that we should start mentally preparing for the very real possibility that it is, in fact, genetic - and that there will be nothing they can do at that point. He believes that if we don't find something very clear soon (like an adrenal/pituitary/thyroid tumor), he will have to go ahead and give me a bariatric surgery - not because he is afraid my problem comes from pathological over-eating (he believe this not to be the case, as do I, evidenced by my constantly increasing anemia and improving cholesterol levels) - but because he believes it would be the only way to forcefully starve my body to the point where I literally waste away to some degree. The surgery would make it psychologically feasible to undergo this much starvation without just going crazy. He doesn't believe it will be a solution, just a way to buy more time for my heart. And he admits, that it will be a limited solution, in both scope and duration.
We did find a relative who died of an undiscovered adrenal tumor, so the doctor is encouraged that we may have a hope of finding something fixable like a genetic condition that leads to these tumor proliferation rather than just a receptor defect.
However, the multi-legged stool balancing act remains - my gastric, rheumatic, etc., problems remain, and will have to get dealt with at the same time. This is why I will be dealing with so many separate teams when I go back in April. I ended up returning to school after only one day at the hospital, since we were unable to get our follow-up appointments in the time span required...but I am confident in the direction the doctor is taking this work, albeit frustratingly slowly.
My diet has not changed - I am still not allowed to eat enough to prevent a severe vitamin deficiency, so I will depend on vitamin supplements until we can get a definitive answer on what is causing my intestinal malabsorption. To further damage my intestines by eating what I wanted would simply serve to make any future time extensions via surgery a difficult to impossible task. So, for now, salads remain a distant, delicious and tempting, missed memory. For now, I do have to lead a relatively quiet lifestyle...without a way to slow down the rate at which my pancreas is growing, and without a way to keep the system from adding pounds at the drop of a hat (stress, insulin, or a myriad of other possible triggers), it's all about not stressing my heart more than absolutely necessary these days.
Again, thanks to all of you who have prayed...and I'll update as I know more.
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