Happy Birthday Jennifer

HAPPY BIRTHDAY JENNIFER

May you bike be fast and the roads be twisty - and may you ride the Dragon's Tail before you celebrate your next birthday!

With much love from:

Colin, Debra, Devon, Kylie, and Madeline

Road to Where?

The say all roads lead to Rome... Well this road I seem to be on must be the path that winds through Dante's Divine Comedy on it's way to the imperial city. I know what's broken - and as usual it's all in my head. The tumor has decided to make varying amounts of it's usual poison and in doing so it's wreaking havoc with the rest of my body. I am hoping that this is all about it being caught up in "Death Throes" and just trying to make it's final mark as it exits my person forever. However, another part of me is jeering at that piece of optimistic self delusion and giggling madly in the background. Since I don't trust people that laugh manically for no reason - we'll be going with the happy thoughts. I am up and walking again - nothing big or long, but I can pass for normal for the first 50 feet or so. I'm working very hard to get my strength back up so I can make the long overdue motorcycle trip to Pensacola before I die of old age or worse. In order to do that I'm going to need to find an endocrinologist that specialized in pituitary problems and that takes Aetna insurance. I'll need to be followed very very closely in the next few months in order to ensure that I don't end up back in hospital. Sorry for the delays in writing more, but I have been very very tired and I'm starting to believe the doctor when he says that I will need a certain amount of time to rest up. Either he's getting better at estimating downtime or I'm simply not bouncing back as quickly... More to come, but not now... Now I need to sleep - perchance to dream...

Learng to Fly

I guess that some things are better left undone. I have never felt my disabilities to be such a huge burden on those around me. I'm floored by the darkness that creeps into my soul as though the darkness could banish the light. My legs are still not working right. If I was 50 lbs. lighter it would really help, but until then I'm slow and need a walker or cane to move much. Impatient children and a spouse that is exhausted and exasperated have left me saddened knowing that I am the cause of their discomfort. Nobody wants me to be on my feet more than me. I'm socked and saddened that I am not bouncing back as quickly, but I find hope in the fact that I am making some progress toward walking alone. Only time can tell what the future holds

Home Again.. Home Again...

I can't express how good it is to be going home finally. I just got visited by Lorris who is the nurse practitioner for Dr. Pernecle (the heart doctor). Looks like I need to check my blood pressure very frequently for the next 3 week and keep a log for the doctor - and they will be working on a follow-up consult with the clinic in Alabama as soon as possible as well to try to get the endocrine adjustments fine tuned. In the mean time, I'm supposed to avoid stress and take it easy for a week or two-so that they can get the baseline stabilized and will have something to work from. They're working on getting me a wheeled walker, and I'll be expected to take it to the mall or Wal-Mart and use it. In addition, they think that my body will be able to self regulate it's temperature in another week or so. So I shouldn't be soaked in sweat when the room temperature is only 62 degrees Fahrenheit. Meanwhile, I will be looking for the consult and appointment information from the clinic in Alabama and hopefully we will finally be getting in :) Overall life is looking good this morning.

YES I AM!

Alrighty Then! Well the news is in and it's better than I had dared hope for. It would seem that my ol' ticker looks to be OK - but that as usual my problems are all in my mind (or my pituitary tumor). Though it is probably much harder to deal with than a simple stint or valve replacement, it shouldn't involve cutting me up to fix. This is that part which I think is the good news. The bad news of course is that means that my wacky endocrine system has tried to kill me yet again. This time was the closest call yet as my Blood Pressure was driven down to 50/30 before medical intervention could recover it. We have been playing a cat and mouse game for the last few days, but I think my wonderful Doctors have it firmly under their paw now and we should be able to stabilize me soon and get me back to the world of the living. The big holdups are the final blood cultures to figure out what lingering infections might be lurking causing the low-grade fevers and the amount of time that it takes for the endocrine tests to come back. At this point - the key question we need to know before I can go home is just how much cortisol is the tumor producing - so that we can adjust the other drugs around it, then if possible, it would be nice to know the direction and rate of any changes in cortisol. For now, I will be subject to much stricter monitoring after I get out and will need closer followup until things get completely stabilized. For now we are going to assume that all of this is going to be, in the long run, a change for the better. So when people ask me if I am ever going to get better - I can say with confidence - "YES I AM!"

The Luck of the Irish Channel

The distinctive individual to my left is my priest. A source of great comfort to myself and my family. Your priests serve as far more than mouthpieces for the gospel, they live it. They are celibate as a sacrifice so that they can focus on others instead of themselves as Jesus did. Father has my admiration, my love, and my compassion, it was that one dark night in ICU that my soul was delivered from the bowels of hell and the demons chased back to the darkness - only to peek out or howl to me on occasion, but now keeping their distance from me. I have made a huge leap in my faith as well. I have gone from just being scared about the punishment from my sins in purgatory, to now being very concerned about the effect that they have on separating my guardian angel and my lord from my person. Once you know that purgatory is true, and that the sacrament of Last Rites is efficacious - you are stuck in a moral quandary. If the Catholic Church is telling the truth and their solutions are surely effective (I know we all don't get a test drive) then what do you do...? I signed back up, and renewed my membership in the universal church by accepting Jesus's selection of me as a member. Especially after I found that all the sacraments brought the intended relief, and that they mystery of the Catholic Church was surmounted only by it's majesty and unbroken succession to Jesus Christ himself through Peter - the rock on which Jesus has stated he would build his church. If you see this priest or any other, you need to throw your arms around them and than them for the sacrifices that they make for you everyday in their lives. Remember, that the Catholic church is universal - if you are in a low place and not getting the help or relief you need - you can always still call a "real priest".

Your Catholic Priest - Don't Leave Earth without his Blessing!

Medical Update - Welcome to My World

Welcome to my world! Today we are still in the hospital on the 3rd floor with all the wonderful telemetry equipment. I have the cool blow-up leggings to reduce the canckles and tree-trunks to saplings, and I have 6 blown-out IV's and 1 good one. And of course - the wonderful heart monitor, which seems to beep continually in another room where I cannot hear it - but it seems to send the lovely staff scurrying.

I try really hard not to be a pill or bad patient, because I know what it's like to be on the other side too. Right now I'm radioactive and I can't be within six feet of my own children for the next few days. I'll get even more radiation tomorrow to finish off the nuclear stress test on my heart and hopefully figure out how it can pump so hard and strongly but not manage to keep my blood pressure up without steroids. In addition, there is a full battery of endocrine tests to be run and Dr. Tandron has taken an active interest in my case after perusing the case files going back about 15 years. She had no idea how interesting a patient I was going to be until she started perusing the dossier, but I'm also a human and not a circus freak or oddity to be poked, prodded, or exhibited for amusement or education even (Unless I get a really cool motorcycle for my willingness to demean myself). I managed to get a shower today - the bagged arm with the IV is distinctly a different color than the washed parts of my body and I'm enjoying that. I smell fabulous and the staff have all stopped to sniff the wonderful scent of bay rum wafting out my door. It amazing what getting clean and smelling descent can do for you ability to face adversity. I think I finally understand the 300 Spartans that washed their hair and preened before the battle - a act which gave the Persians the reversed idea about the type of enemy they were now facing. Tomorrow morning, I will be in tests until after lunch. No food, since if they find the problem and it looks easy to fix - they'll "stop-and-stint me" methinks. Overall, I'm trying to keep mu sense of humor up and I am praying very hard that this ordeal comes to a resolution soon, maybe even one with a better prognosis than I have been privileged with until now.

A Shameless Plug for a Good Company

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You Will Never Guess where I am Blogging From

Ideally, I am thinking that every hospital in the US should offer free High-Speed Internet Service. Without that amenity I am rediscovering the "Joy's of Dial up!". But what pray tell got me here? You would have never guessed that either - as an insulin dependent diabetic who has been laboring furiously to control my blood pressure - it would seem that somehow I had an unexpected success, and for reasons unknown as yet my blood pressure dropped down to 50 something over 30 something This led to me crashing down into a fleshy heap, on brick paving right outside the Catholic church where I had just provided the music for the Charismatic Prayer Service. I remember standing then I was on the bricks and sure I had broken, or at least bruised a rib or two. After some belligerence on my part, I found myself in the Hospital ER - Where the the crowd of Doctors and Nurses roared "Let the Games BEGIN!". Overall, they did a wonderful job of figuring out a way to stabilize me before my ticker tocked. I'll be here until they can keep me stable outside of a hospital setting - hopefully by finding out what secret endocrine process is causing this - or is it really my ticker going out? Check in later for the news as it happens, and as I am capable of dialing in a posting it.