The Stars and the Cookie Jar

I totally lifted this from 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