Tuesday, September 20, 2011
Realization
I came to the realization I'm chasing a physical ghost I can feel but doctors can't see. I tell them but they're not listening. I show them, but they're not looking. I explain to them but they're not hearing. All they see is normal and my imagination while I see a ghost I know and feel in my body. They just won't believe me to care. And so we sit looking at each other, they wondering when I'll leave and me wondering when they'll ask to help.
Tuesday, September 6, 2011
The Conundrum
Here's the conundrum about eating.
With respect to the digestive issues and problems, I can't go anywhere if I eat breakfast, brunch or lunch because I don't know how and when the system will react. I can't eat anything if I go anywhere for the same reason.
With respect to the recent problem of Temporomandibular Joint Disorder I'm not supposed to eat or only eat soft foods or liquids, so the muscles and ligament can heal in the proper position. If I eat any food, soft or otherwise, the jaw may still shift out of joint for the rest of the day and has to be gently pushed back into place.
If I eat I get tired, sleepy and go to the bathroom, often. If I don't eat I get tired, sleepy and hungry and still go to the bathroom, only less often.
So that's it, damned if I eat and damned if I don't.
With respect to the digestive issues and problems, I can't go anywhere if I eat breakfast, brunch or lunch because I don't know how and when the system will react. I can't eat anything if I go anywhere for the same reason.
With respect to the recent problem of Temporomandibular Joint Disorder I'm not supposed to eat or only eat soft foods or liquids, so the muscles and ligament can heal in the proper position. If I eat any food, soft or otherwise, the jaw may still shift out of joint for the rest of the day and has to be gently pushed back into place.
If I eat I get tired, sleepy and go to the bathroom, often. If I don't eat I get tired, sleepy and hungry and still go to the bathroom, only less often.
So that's it, damned if I eat and damned if I don't.
Saturday, September 3, 2011
A Lost Year
Tomorrow, Sunday, I turn 62. Precisely about 6 pm to be exact. Yeah, about then, and since a few weeks after that day and time last year I've lost almost the entire year, all of it chasing a digestive system that went south and having a good doctor who understands but specialists who don't. I'd say they suck, but that's impolite, even if it is appropriate.
There's nothing worse than a specialist who is totally dismissive and condescending. Really. She didn't want to hear what I had to say and even interrupted me to say it was my imagination and that every thing was normal, at least according to the results of the proceedures and lab tests, but they didn't look for what I wanted to know, only for obvious abnormalities. Which is ok if that exists, but they wouldn't answer my question, what i if normal is abnormal.
And so what happened, like you want to hear a story that's not much except irritating to live with and frustrating to find an answer? After taking some photos of the tissues masses the doctor finally said they clearly appear to be blood clots, or most of them, some were really, "Huh?" masses.
Anyway, she ordered lab tests for some, except they didn't analyze them for what we were looking for, only for the obvious. Like one had blood vessels attached and they didn't see it or at least said they did, or they called it normal tissue. The thought was that my small intestine is bleeding in several places, or so it appeared from mulitple moderate to large clots.
Anyway, as always happens, it got better after the latest tests where it's not obvious (blood clots) but still a problem with consistent mild to moderate diarrhea, like 3-5 times a day depending on when and what I eat. It's more of the same I tell my doctor, "I only feel good when I don't eat and that's not a promise things won't still go wrong."
So, from last October when it started to just a few weeks ago, I spent chasing diagnoses for something no one can find, or really wants to look, and without a diagnosis I can't get more test to eliminate ideas. The new cost-efficient and effective healthcare, if it's not obvious, then you don't get test. You only get them when the doctors think something is wrong.
It's the catch-22. You know something is wrong but they don't believe you, so you can't prove it either way because they won't order test because they don't think something is wrong, only it's your imagination, or your diet, lifestyle, health, fitness, etc, but still it's you. So I'm back to square one only 11 months later and older.
On top of that, last winter they discovered a 20% blockage of my Aorta, you know the artery that supplies blood to the lungs to replenish the oxygen in the bloodstream and leave carbon dioxide behind to exhale. It's been there about 20 years since I noticed I get short of breath when I exert myself and I have to rest or slow up to catch up.
I had some of the more extensive heart tests where they discovered it. Otherwise, my heart is good and sound, only one very small artery on the bottom with a slight blockage at a high heart race, which is the reason it can race from normal to over 180 beats per secongs in seconds, which is what happens when I exert myself. My heart races trying to feed the lungs with blood but can't until the body slows up to balance the supply versus the demand.
So on statin drugs I went, which last about 2 months when my body crashed. This is not uncommon but two statin drugs later, the same results but each time the reaction is sooner and worse, so I'm off statin drugs until the cardiologist has some ideas. Because it's only a slight, long-lived blockage, the only issue the high cholesterol which they want to get below normal where it's never been.
So that's on the horizon when I can get the digestive problems sorted out or better, or we can find something that fits in to those problems and not thoroughly crash the body into being a permanent couch potato. And this last June I got Temporomandibular Joint Disorder (TMD) where the joint in the upper jaw shifts position.
It's caused by the cartildge shifting, yes, it's not permanently attached to anything, from tired or weakened muscles and ligaments or from pressure from chewing. It's often caused by stress or other physical problems. So when I eat my jaw shifts slightly to the right and the teeth don't fit and sometimes grind. The dentist wasn't optimistic it's cureable but merely treatable.
And as always my Raynaud's Syndrome effects both my hands and feet now. Below 50 my toes swell and turn bright red, along with the feet swelling unless I keep them inside shoes, but then swell when I take the shoes off. My hands are still the same, it takes temperatures near 40 before they become stiff and cracked.
Gee, and they say life doesn't suck. Wait, that's doctors. Life just is what it is. And the sad part is that the last 3+ years chasing a minor digestive problem into a bigger one (March 2008 to October 2010 for the minor ailment and this from there for the obvious one no one wants to see) has diverted another change in progress, which has had it's own issues and problems, but that's another story.
The rest of the issue I don't have a choice but to live with them. The digestive one is optional but first I have to find a specialist who will listen enough to think beyond obvious and think beyond routine test. I'd rather they do that and prove something, even if I'm wrong, than keep hearing it's me. But then without a diagnosed problem I don't get a specialist or tests.
Maybe the next year will be, like what, better?
There's nothing worse than a specialist who is totally dismissive and condescending. Really. She didn't want to hear what I had to say and even interrupted me to say it was my imagination and that every thing was normal, at least according to the results of the proceedures and lab tests, but they didn't look for what I wanted to know, only for obvious abnormalities. Which is ok if that exists, but they wouldn't answer my question, what i if normal is abnormal.
And so what happened, like you want to hear a story that's not much except irritating to live with and frustrating to find an answer? After taking some photos of the tissues masses the doctor finally said they clearly appear to be blood clots, or most of them, some were really, "Huh?" masses.
Anyway, she ordered lab tests for some, except they didn't analyze them for what we were looking for, only for the obvious. Like one had blood vessels attached and they didn't see it or at least said they did, or they called it normal tissue. The thought was that my small intestine is bleeding in several places, or so it appeared from mulitple moderate to large clots.
Anyway, as always happens, it got better after the latest tests where it's not obvious (blood clots) but still a problem with consistent mild to moderate diarrhea, like 3-5 times a day depending on when and what I eat. It's more of the same I tell my doctor, "I only feel good when I don't eat and that's not a promise things won't still go wrong."
So, from last October when it started to just a few weeks ago, I spent chasing diagnoses for something no one can find, or really wants to look, and without a diagnosis I can't get more test to eliminate ideas. The new cost-efficient and effective healthcare, if it's not obvious, then you don't get test. You only get them when the doctors think something is wrong.
It's the catch-22. You know something is wrong but they don't believe you, so you can't prove it either way because they won't order test because they don't think something is wrong, only it's your imagination, or your diet, lifestyle, health, fitness, etc, but still it's you. So I'm back to square one only 11 months later and older.
On top of that, last winter they discovered a 20% blockage of my Aorta, you know the artery that supplies blood to the lungs to replenish the oxygen in the bloodstream and leave carbon dioxide behind to exhale. It's been there about 20 years since I noticed I get short of breath when I exert myself and I have to rest or slow up to catch up.
I had some of the more extensive heart tests where they discovered it. Otherwise, my heart is good and sound, only one very small artery on the bottom with a slight blockage at a high heart race, which is the reason it can race from normal to over 180 beats per secongs in seconds, which is what happens when I exert myself. My heart races trying to feed the lungs with blood but can't until the body slows up to balance the supply versus the demand.
So on statin drugs I went, which last about 2 months when my body crashed. This is not uncommon but two statin drugs later, the same results but each time the reaction is sooner and worse, so I'm off statin drugs until the cardiologist has some ideas. Because it's only a slight, long-lived blockage, the only issue the high cholesterol which they want to get below normal where it's never been.
So that's on the horizon when I can get the digestive problems sorted out or better, or we can find something that fits in to those problems and not thoroughly crash the body into being a permanent couch potato. And this last June I got Temporomandibular Joint Disorder (TMD) where the joint in the upper jaw shifts position.
It's caused by the cartildge shifting, yes, it's not permanently attached to anything, from tired or weakened muscles and ligaments or from pressure from chewing. It's often caused by stress or other physical problems. So when I eat my jaw shifts slightly to the right and the teeth don't fit and sometimes grind. The dentist wasn't optimistic it's cureable but merely treatable.
And as always my Raynaud's Syndrome effects both my hands and feet now. Below 50 my toes swell and turn bright red, along with the feet swelling unless I keep them inside shoes, but then swell when I take the shoes off. My hands are still the same, it takes temperatures near 40 before they become stiff and cracked.
Gee, and they say life doesn't suck. Wait, that's doctors. Life just is what it is. And the sad part is that the last 3+ years chasing a minor digestive problem into a bigger one (March 2008 to October 2010 for the minor ailment and this from there for the obvious one no one wants to see) has diverted another change in progress, which has had it's own issues and problems, but that's another story.
The rest of the issue I don't have a choice but to live with them. The digestive one is optional but first I have to find a specialist who will listen enough to think beyond obvious and think beyond routine test. I'd rather they do that and prove something, even if I'm wrong, than keep hearing it's me. But then without a diagnosed problem I don't get a specialist or tests.
Maybe the next year will be, like what, better?
Subscribe to:
Posts (Atom)