health issues: good news/bad news

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health issues: good news/bad news

Postby david » Fri Jul 25, 2008 9:25 pm

It's been a bummer of a summer. I was feeling really bad--extreme fatigue, dizzyness, seeing spots, numb fingers and lips, cold chills, weight loss, cramps, etc. I went to the doctor for a check up. I asked her to take blood and test for Lyme Disease.

When I got home I got a call from the Doctor telling me to go to the hospital, where I was given two units of blood. It seems my hemoglobin level had dropped very low (8.2--with 14 to 18 being "normal"). A few days later they took more blood and the level was back down again.

At this point they began intensive and incredibly invasive tests to see where the blood was going (I was checking my barn for vampire bats). They couldn't find where it was going, but for the last month the gastro specialist has been telling me he was reasonably certain I had a bleeding tumor hiding somewhere. He first thought of a bleeding ulcer but that was eliminated right off with the endoscopy.

Well, this past week I got a call saying the results were back from one of the biopsy tests they were running. I have Celiac Sprue--an allergy to gluten. It seems I must have had this for some time--probably years--without it being diagnosed. My small intestine has not been absorbing nutrients because of the damage from the allergic reaction. It was damaged enough that I was leaking blood through the intestinal wall.

The good news is that I don't have some hidden tumor. The bad news is that I have to eliminate everything from my diet that has ever been near wheat, or any other kind of gluten. I was sort of hoping for something they could cut off and throw away.

At least they seem to be finished with the whole game of running cameras up and down me and cutting off bits to grow in little dishes. They told me yesterday to expect it will take "weeks, maybe months" to get back to feeling human again.

Anybody have any good recipies for barbequed rice cake?
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Re: health issues: good news/bad news

Postby allanlummox » Fri Jul 25, 2008 9:57 pm

Man. I am no fan of being probed. Bummer.

But it sounds like stuff you can adjust to; life is just full of those.
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Re: health issues: good news/bad news

Postby 601blues » Fri Jul 25, 2008 10:47 pm

Gezz Glad they they found the problem!! now sunny days are ahead!!
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Re: health issues: good news/bad news

Postby grady » Fri Jul 25, 2008 10:49 pm

Sorry to hear about your condition David.

I wish you all the best.

I don't like being probed either. That's why I wear this Aluminum foil hat everywhere I go.
I figure if the aliens can't find me, they can't probe me.
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Re: health issues: good news/bad news

Postby ricochet » Fri Jul 25, 2008 11:42 pm

Aw, man!

At least it's not a cancer that's going to get you. A gluten-free diet's not easy, but it'll fix you right up.
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Re: health issues: good news/bad news

Postby david » Sat Jul 26, 2008 12:13 am

Yeah, the probing deal is no fun at all. Actually, the preparation for the colonoscopy is worse than the probing itself. I don't know who named that stuff "Golightly" but they had a mean sense of irony. You have to drink a gallon or so of it, one glass every half hour till its gone. Then you get the screamin' sh1ts till two in the morning, when the dry heaves hits the southern regions. I thought I was going to have to send somebody to town for more toilet paper. I should have gotten Grady to send me one of his hats, and maybe some aluminum foil drawers to go with it.

I don't know if it was the blood transfusions or the large quantity of saline solution they've run into me, or some of the drugs for trying to rebuild my gut, but something had a similar effect to some of those new fangled drugs they advertise on TV all the time. You expect that sort of thing when you're a teenager, but it just ain't fittin' for a 51 year old man to go round pointin' like a Spaniel all the time. That's been going on for weeks now and it gets burdensome. It's kind of confusing when you look real proud but feel embarrased about it.

I'm still trying to figure this new diet out. The best I can tell, when they say "gluten-free diet" that word "gluten" must be Scandanavian for "good." At least it seems like this diet is free from everything good. Of course, the worse I got to feeling over the summer the more I was trying to eat right. I have lots of veggies coming in from our garden and I was eating a lot of fruit, but with all the other symptoms I was going out of my way to eat as many whole grains as I could. I didn't know I was poisoning myself by doing it.

For the couple of weeks when the doctors were telling me I had cancer but they couldn't tell where or how bad yet, it was a real drag. Mortality sucks. I still had to get out to the barn twice a day to feed the stud horse, colts and my bluetick. That's about all I have been able to handle. On the days when I was so bad I couldn't hardly get off the couch--and didn't even really want to--I would remember the old Tom T. Hall song: "Who's Gonna Feed Them Hogs." There's a whole lot of truth in that song. You finally just have to get up and go feed.
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Re: health issues: good news/bad news

Postby Dalron » Sat Jul 26, 2008 12:25 am

From what I see in the supermarkets these days, there are an enormous range of gluten-free products available so hopefully that will make life a little easier.

Here's one Aussie company and I'm sure you would probably have something similar:

http://www.orgran.com/home/index.php

I've got to have my annual 'top and tail' (gastroscopy & colonoscopy) in the next couple of months, something I DO NOT look forward too!! :(

And you're right: the preparation is worse than the procedures! At least for the last bit you get a general.

Anyway, I wish you all the best for your future health.
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Re: health issues: good news/bad news

Postby ricochet » Sat Jul 26, 2008 1:23 am

It's only been a little over a year since I last posted it, but it seems appropriate to put up my Colon Preppin' Blues yet again:

Colon Preppin' Blues
©2003 John Culp

I hear my colon rumblin',
It's gonna blow again.
An' I ain't seen no toilet paper
Since I don't know when.
I've been drinkin' Phospho-Soda,
Lord, it seems so long.
And my bowels keep on dribblin',
I'm stuck here on the throne.

(Solo)

When I was just a baby,
My mama told me, "Son,"
"Always eat your fruits and veggies,"
"Don't cook your meat well done."
Now my colon needs a scopin',
To find what's ailin' me.
Guess I've got to keep on hopin'
It will be trouble free.

(Solo)

If I was a colon doctor,
If this bowel prep was mine,
You bet I'd let folks wash it down
With a little bit of wine,
But I've got to keep on purgin',
Until it all runs clear.
I wish this all was over,
It's tearin' up my rear!
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Re: health issues: good news/bad news

Postby stumblin » Sat Jul 26, 2008 7:10 am

Hi David, sorry to hear about that, but like Lummo says, it's something you'll adapt to.
Here's a page with some gluten free recipes. Some of those bread recipes sound pretty good. Mind you, I only just got up and haven't had my breakfast yet, so pretty much anything sounds good!
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Re: health issues: good news/bad news

Postby maxx england » Sat Jul 26, 2008 11:13 am

I can't handle milk, searching labels to look for what had been a beneficent friend and is now the devil dressed in white is a pain, but it's better than having sore guts and joints.

Life will get to be inconvenient, the food will probably be limited, but when you feel well again, it's going to be worth the effort.

But I still miss custard cream biscuits.
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Re: health issues: good news/bad news

Postby david » Sat Jul 26, 2008 3:33 pm

Yep, used to be a good friend of mine, but done turned evil on me. My wife seems to be taking the gluten free thing harder than I am! After the list of other possible causes I had been given, merely changing what I eat seems like a pretty good way out. The bleeding ulcer thing would have been better, but they ruled that out pretty quick.

Rico, I'm glad you didn't post those lyrics the day I was doing the big preparatory purge. If I'd laughed like that sitting at the computer I would have had to throw away my britches and the chair.

It has been a week since I stopped all wheat intake and I can tell I'm beginning to have a bit more strength and feeling just a bit better. I actually want to do some work, even though I give out very quickly. A week ago I didn't even want to do anything.

When I came to the realization that I was going to have some down time I thought I'd really get a chance to play a lot and maybe learn some new tunes on both the dobro and banjo. I couldn't even play for more than about ten minutes and I'd have to go lay down. There were a couple of days when I thought I'd have to get better to die.

Till you've felt that bad you don't know how good it feels to get better. Do NOT take an average day for granted!

And Grady, keep that hat handy. Those damned aliens are sneaky.
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Re: health issues: good news/bad news

Postby ricochet » Sat Jul 26, 2008 4:26 pm

David, I wrote those lyrics sitting at the computer while Mrs. R was going through the process in the next room. I didn't share them with her for a while, either. You have to hear them in Johnny Cash's voice in your head for the full impact, of course.
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Re: health issues: good news/bad news

Postby leftyguitarman » Sat Jul 26, 2008 8:10 pm

Dalron wrote:From what I see in the supermarkets these days, there are an enormous range of gluten-free products available so hopefully that will make life a little easier.


Grocery stores these days, at least around here, are really starting to cater to those kind of things. The grocery store I work in has a HUGE selection of gluten-free items. A lot of people are going organic now too, and we also carry a lot of organic stuff. Way more than our competitors like Albertson's, Safeway, Wal-Mart, etc.

David - I'm really sorry to hear about your health conditions. Changing your diet to get fixed up is a lot easier than having to go through other stuff. I'm sure with the lifestyle change, you'll be feeling great again in no time. :D
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Re: health issues: good news/bad news

Postby mike932 » Sun Jul 27, 2008 4:46 am

I knew having cancer had a silver lining, I get to eat anything I want. bring on the ice cream. Dealing with an illness is not as bad as it first sounds. The testing is the worst part of it. I have been seen naked by more people than Paris Hilton. The worst part is not feeling good enough to do the things you really want to do when you want to do them.
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Re: health issues: good news/bad news

Postby david » Sun Jul 27, 2008 2:07 pm

mike932 wrote:I knew having cancer had a silver lining, I get to eat anything I want. bring on the ice cream. Dealing with an illness is not as bad as it first sounds. The testing is the worst part of it. I have been seen naked by more people than Paris Hilton. The worst part is not feeling good enough to do the things you really want to do when you want to do them.


That pretty much sums it up. Not feeling like doing what you really want to do is bad--add not knowing what is doing it to you, and it is terrible. Once you know for sure what you are dealing with it gets, if not easier, at least definable. Then you can begin to turn and face the situation.

Mike, I hope you are giving whatever cancer you've got a hell of a fight. I hope it is something they can cut off and throw away and then get on with your life. In the last month or two I've done more making arrangements and dealing with issues of mortality than I have since back in the day when I was doing a hardline combo of heavy psychedelics and Tantric practices and pushing the boundaries really hard. I wasn't doing it for fun back then. I went back in many times just to look those demons in the face one more time. That prep work helped me get through this.

I've been reading through the list of what I can and cannot eat and just realized the worst part of this yet: BEER IS NOT ALLOWED!!!!! This is getting really serious.

As for the fancy markets that carry all the gluten free products and organics, I live in a rural area and if I want anything "whole" or "organic" I have to raise it myself. Nashville is the closest place with a whole foods and that's two hours away. I guess I'll be going to Nashville a lot more often. There are advantages to cities--even beyond being places to store city people....
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