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Archive for March, 2012

So I continue to be sick.

I finished my course of antibiotics some time ago. Within a week it was clear I was rebounding. I’ve been measuring my wrists and trying rings on my fingers, so I have objective measurements that show that the antibiotics helped and that things got worse when I was off of them. My GP is very, very popular, so it was hard to get in with him. I saw other people in his office, and they didn’t want to continue treating me with antibiotics. They wanted to send me off to specialists – first the rheumatologist, and if he wasn’t happy treating the probably-Lyme, then to Infectious Diseases. Certainly, they didn’t want me in their hands.

I finally got in to see my GP yesterday. His take on the situation is that either I have Lyme or I have some other systemic infection that is causing generalized inflammation. Regardless, the antibiotics bring down the inflammation and give me ENORMOUS benefits to my quality of life, so he is happy to continue treating me with them. Thank god. As of yesterday evening, I am back on the amoxicillin. We talked about options, and agreed that A) I am going to see an Infectious Diseases specialist and B) we are going to use an IV antibiotic. For treating Lyme, the oral drug of choice is doxycycline, which I react very, very badly to.* Because of that, I am taking the second line drug, amoxicillin. According to my GP, oral doxycycline can be as effective as the IV drugs (though that doesn’t match up with my recollection from researching this – my recollection is the IV drugs beat doxy), but amoxicillin cannot compete on the same level. That’s why he agreed to the IV antibiotics.

He’s still treating me relatively conservatively – not really high doses, not really long courses – but given all of my other conditions and my general sensitivity to medications, I think it’s for the best. If this round doesn’t take care of things, we’ll have to reconsider what we’re doing, but by then we’ll have a specialist on board to advise. I can only hope that the people in the Infectious Diseases department believe in Lyme as a devastating, long-term illness that can be hard to wipe out rather than the image some organizations present, where Lyme is supposed to be easily knocked out with a single, relatively short course of antibiotics. I do not want to continue living like this – I am in an enormous amount of pain, to the point where it’s hard to care about anything because existing hurts. Even lying on my very soft, comfortable bed hurts – if I lie on my side, my ribs and oblique muscles on the side that is up feel like they’re getting worked or stretched very hard and become painful (which makes me need to flip often), and if I lie on my back, my back and neck start complaining. And lying down is generally the most comfortable thing I can do. Right now, I need to wake up at least a half an hour before I need to start moving, so I can take a pill for the pain and wait for it to kick in. Best of all is when I wake up 2-3 hours before I need to get up: I can take the pain pill then, and go back to sleep. If I’m lucky, I’ll wake up again a little while before I have to start moving, because for some reason, the pain fades slowly if I am simply awake. I have no idea why, I only know how it works.

Blah. All of this pain, this frustration, and I have other things that need to be dealt with. I need to see my gastrointestinal specialist because my stomach has been very, very bothersome of late, and I need to talk to my sleep specialist because of a medication mix-up. I need to make an appointment with the Infectious Diseases person, who I am quite nervous about. I need to decide whether or not to cancel the rheumatologist appointment I have for Monday (my instinct is to cancel). I need x-rays and possibly an MRI done of my neck because I have pinched nerve symptoms; for that matter, the headache people wanted an MRI of my head, too, due to my headaches.

All of that, and I am sitting here in a cloud of smelly dog-fart, writing this post, because…well. Because I know people come here to read what it’s like to live my life, with my conditions and my service dog and my dreams and my fiance. Because on some level, this gives me a feeling of having some meaning, if only to get people to understand a bit more about what it’s like to be disabled but not in one of the ‘typical’ ways. (I tend to think of being blind, deaf, and having some form of paralysis as being the better understood forms of disability, though I know that even with those, the understanding of outsiders is horribly inaccurate.)

Nnf. This rambling, wandering, probably less-than-polite post is brought to you by probably-Lyme. (Why the hell is it always probably-something in my life?! I swear, not a single condition that I’ve got was easy to diagnose, and every stinking one of them was either missed or nearly missed by at least one medical professional before I found someone who got it, and then started getting the treatment I needed.) Anyhow, I think that’s intended to be and explanation, and perhaps something of an apology. I know I am neither at my best nor writing as often as I would like (by a long shot on the latter at least!). I am, nonetheless, here. That has to count for something.

*It starts with flushing in the face and on the chest, then moves to a kind of dazed confusion. Finally, my tongue and throat begin to swell, which is called anaphylaxis. It’s one of the most dangerous reactions to medications that exists because it will eventually make it impossible to breathe. Especially in someone with asthma (like me), there is potential for the swelling to go all the way down into the lungs, at which point you are DEAD – nothing they can do. Fortunately for me, anaphylaxis set in quite slowly, so they were able to get antihistamines and adrenaline into my system before my breathing was even labored.

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I’m not sure if most of you out there realize that there are big problems with how Paypal operates. BIG problems. Essentially, Paypal acts like a bank, but they aren’t limited by…well…any of the limitations that governments have put on banks – not in the US, not worldwide. That, in and of itself, is frightening. It is entirely at their option to decide whether someone is acting legitimately or not, and their definition of legitimately is…odd. A great many of us have buttons asking for donations to support ourselves, and Paypal’s statements on that kind of fundraising have been mixed. Last winter, when Regretsy.com was raising money to send gifts and money to families that didn’t have the money to give things to their children and celebrate the holidays in the style that the American Dream says we should, they used a donation button. Paypal decided they didn’t like it, and shut down ALL of the Regretsy owner’s accounts. They said things like, you could use the donation button to raise money for a sick cat but not a sick person. That, my dears, scares me quite a bit, as I know a great many people who have literally had their lives saved by monetary donations from the internet. My own fundraising years ago to pay for training with Hudson (after an unexpected major car repair) could have been declared inappropriate, and frankly I didn’t have another way to pay for everything at that point.

Recently, Paypal has started cracking down on indie publishing houses and what they publish. The one I know of in particular is Smashwords. Now, a great many of the authors on Smashwords, they live on what they are able to make by selling their work electronically. A good friend of mine, whose call brought in most of the donors who allowed me to get the service dog who has changed my life, is one of those people. I’ll be frank, what she publishes is porn. Well-written porn, with story-lines and characters that seem like real people. It’s what keeps a roof over her head, food on her table, and life-saving medication in her system. It’s her livelihood.

Paypal is restricting what authors can publish through those publishing houses, and frankly the way it’s defined, just about anything with a vaugely erotic content could be banned. Like many Paypal restrictions, it’s a very ill-defined, broad restriction. They are particularly tetchy about bestiality, rape-for-titillation, incest and underage erotica. Now, at first glance, you may shrug and say, who cares about porn and erotic writing, especially those areas?

Rape-for-titillation could describe most of the romance area, where there is a great deal of ‘oh no! oh no!’ followed by ‘oh yes!’, also known as bodice-rippers. Incest? Well, any time you attempt to portray noble houses in a manner that is true to history, you’re dealing with things like cousins intermarrying, which sure as hell sounds like a modern definition of incest to me. Bestiality includes things like shapeshifters in fully-human forms and mythical creatures with human (or higher) level intelligence. And underage erotica…you start worrying that your young adult authors where teens have their first kiss could be included! Certainly the works of well-respected authors like Tamora Pierce include fade-to-black sexual encounters between teens.

Yeah, there’s a lot of area covered. And if that doesn’t bother you, I’ve got one more point for you –

The people who hold my money shouldn’t have a say in how I spend it. My bank can’t tell me I can’t spend my money at an adult bookstore or an adult toystore, and that is a GOOD THING. It’s basic freedom. If the government has not made trafficking in certain goods illegal, my bank should not be able to affect my participation in that trade, either as a buyer or a seller. If we start letting the people who we rely on to move money around tell us what we can and cannot buy, I think we will find ourselves far, FAR more limited than our governments would ever allow. And that, my friends, frightens me. My bank, my credit card company, and Paypal should not be able to act as censors.

Please, folks, re-link this, spread it, talk about it, look into it.

There is a famous quote by a German Pastor who spent WWII in concentration camps. He was describing the actions of the German people, but I think it is appropriate here:

“First they came for the communists,
and I didn’t speak out because I wasn’t a communist.

Then they came for the trade unionists,
and I didn’t speak out because I wasn’t a trade unionist.

Then they came for the Jews,
and I didn’t speak out because I wasn’t a Jew.

Then they came for me
and there was no one left to speak out for me.”

Let us speak out, my friends. Paypal has shown in the past that it bows to public outrage. I, my friends, am outraged. I hope you are, too.

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