posted by ![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
selkie at 08:47am on 17/07/2005
selkie at 08:47am on 17/07/2005I totally lifted this from ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
chaos_pockets' journal, albeit a public post, because I thought it ought to be more widely seen.
"...Lyme disease bacteria are transmitted to humans by ticks that are carried by deer.
The disease is often identified by an expanding "bulls-eye" rash that develops days to weeks after a tick bite. Other symptoms include tiredness, fever, muscle aches and joint pain."
Dear World: See? It's a thing. It sucks. Now, it's in the news.
So please, pay attention.
We are not making this shit up. We are not trying to make life more difficult for doctors, for family, for friends, for professors, for landlords. We are not attention whores.
We are being compared now by our doctors to patients with cancer, patients with AIDS, when it comes to treatment, and sometimes when it comes to disease, and we're terrified by this.
We also have a disease that can go for over a decade without being caught, because the tests for it have an obscenely high number of false negatives, because doctors, ignoring what the CDC says, say it only exists in certain areas, when it's being increasingly found all across the United States, as well as the entire world, and we have a disease that, while curable, is not understood, and doesn't have a very good treatment yet.
We have a disease where the treament causes more pain than the infection itself, and narcotics aren't enough.
So we'd kinda appreciate it if you'd, y'know. Maybe eventually do something to make the situation a bit better. Little research. An accurate test? We'd like an accurate test.
Much love.
There are an alarming lot of diseases like this, considering how proud our country is to be at the forefront of Western-style medicine, and yes, it did make me think of Gaucher. If you look for the wrong genetic strain, you might miss the proof of this definitely real and ouchy disease. There's no cheap and reliable (cheap is key -- remember how expensive HIV testing used to be, before ELISA? And how correspondingly few communities had access to it?) glucoceribrosidase deficiency assay. And doctors tend to ignore Gaucher as a possibility in adults, because it's usually caught in children and you would know, right, what had sickened you as a child?
Maybe, if you have a stable family that cares enough to maintain your medical records, or a stable enough home so that the record never got lost, or a stable enough parental income that you got treated at all. But life here for most people is about the instabilities. Medicine can't go on like that, assuming a 'normal' scenario as 'the norm' for patients. Too many gaps are getting left, or sometimes wildly jumped across. It's laughable how many diagnoses I got before they found the right one. It's awful how many times I was laughed at.
And it's not about a lack in technology, sometimes. It starts much earlier. Say we have a good test, and good enough technology to implement it for everyone, and bench scientists slap-happy with the accuracy rates. Sometimes it starts with doctors being too harried, too confident or too stupid to ask the right background questions. For Lyme disease: Is the grass tall and the climate slightly damp where you walk every day? For Gaucher: are you of Jewish extraction?
What, do they think if they find out what's wrong with me, they're going to offend?
/rant
chaos_pockets' journal, albeit a public post, because I thought it ought to be more widely seen."...Lyme disease bacteria are transmitted to humans by ticks that are carried by deer.
The disease is often identified by an expanding "bulls-eye" rash that develops days to weeks after a tick bite. Other symptoms include tiredness, fever, muscle aches and joint pain."
Dear World: See? It's a thing. It sucks. Now, it's in the news.
So please, pay attention.
We are not making this shit up. We are not trying to make life more difficult for doctors, for family, for friends, for professors, for landlords. We are not attention whores.
We are being compared now by our doctors to patients with cancer, patients with AIDS, when it comes to treatment, and sometimes when it comes to disease, and we're terrified by this.
We also have a disease that can go for over a decade without being caught, because the tests for it have an obscenely high number of false negatives, because doctors, ignoring what the CDC says, say it only exists in certain areas, when it's being increasingly found all across the United States, as well as the entire world, and we have a disease that, while curable, is not understood, and doesn't have a very good treatment yet.
We have a disease where the treament causes more pain than the infection itself, and narcotics aren't enough.
So we'd kinda appreciate it if you'd, y'know. Maybe eventually do something to make the situation a bit better. Little research. An accurate test? We'd like an accurate test.
Much love.
There are an alarming lot of diseases like this, considering how proud our country is to be at the forefront of Western-style medicine, and yes, it did make me think of Gaucher. If you look for the wrong genetic strain, you might miss the proof of this definitely real and ouchy disease. There's no cheap and reliable (cheap is key -- remember how expensive HIV testing used to be, before ELISA? And how correspondingly few communities had access to it?) glucoceribrosidase deficiency assay. And doctors tend to ignore Gaucher as a possibility in adults, because it's usually caught in children and you would know, right, what had sickened you as a child?
Maybe, if you have a stable family that cares enough to maintain your medical records, or a stable enough home so that the record never got lost, or a stable enough parental income that you got treated at all. But life here for most people is about the instabilities. Medicine can't go on like that, assuming a 'normal' scenario as 'the norm' for patients. Too many gaps are getting left, or sometimes wildly jumped across. It's laughable how many diagnoses I got before they found the right one. It's awful how many times I was laughed at.
And it's not about a lack in technology, sometimes. It starts much earlier. Say we have a good test, and good enough technology to implement it for everyone, and bench scientists slap-happy with the accuracy rates. Sometimes it starts with doctors being too harried, too confident or too stupid to ask the right background questions. For Lyme disease: Is the grass tall and the climate slightly damp where you walk every day? For Gaucher: are you of Jewish extraction?
What, do they think if they find out what's wrong with me, they're going to offend?
/rant
(no subject)
(no subject)
(no subject)
I swear you're going to give me a heart attack by proximity . . .
(no subject)
(no subject)
And amen.
It'd be funny, almost, to see how some of these doctors behave, if it wasn't so friggin' frustrating.
And if, y'know, it wasn't your or someone else's health on the line.
(no subject)
I would like to step up to the plate in defense of people with weird/rare/strange/odd diseases that have common consequences that NOBODY seems to know about.
Like how birth control gets handed to women on a plate. That's intelligent as all heck. Let's keep doing that. Lets look at statistics shall we? Birth control risk for developing blood clots: 4 times normal risk. Factor V Leiden risk for developing blood clots if Heterozygous (carrying one copy of the bad gene, like I am): 7 times normal risk. Let's combine the two. This is not an additive risk. It multiplies. It's about 35 times the normal risk. Now. Let's assume you are homozygous for Factor V Leiden. Your risk without birth control is somewhere in the 30-80 times normal zone. Multiply that by 4. 120 - 160 times higher risk of developing clots. Now. You would THINK that doctors would insist that women get blood tests before they go on birth control, since blood clots in the legs or arms can lead to potentially deadly clots in internal organs, such as kideneys, stomach, colon, and, gasp, brain, lungs, and heart. Ooo. Ooo. I got one of those! I got four of 'em! Go me! And I didn't know I had the clotting disorder until I got the pulmonary emboli! Wowie! Thanks for the advanced warning, medical community! Lots o' love.
Ahem. I know this doesn't have anything to do with Lyme, but it's just another example of the medical community seeming to ignore something that could be easily kept in check, and a population of people that could be prevented from having clots, at least one risk. *sigh* I may never have developed one if I'd never been on birth control. Doctors always seem so confident, so assured. Yet I seem to know more about my condition then they do. I'm tempted to just pay my co-pay, have them sit in the office while I tell myself what I know already and have them stare at me. Argh. More awareness for these diseases and disorders that "celebrities" don't have. Just because nobody famous supposedly has them doesn't mean they aren't important. They exist, and people die/suffer from them every day.
*hops off soap box and saunters back to her LJ, grumbling*