... writes me the best note I have recieved in months. Tara and I were inseperable friends at the Charles E Brake Junior High in Taylor Michigan 28 years ago. Tara introduced me to Steve Martin, Saturday Night Live and a host of other life-shaping things. I moved to PA in 1978 and haven't really heard from here since about 1980.
Yesterday, I receved this note on my AOL account:
Dear Mr. Horvath,
Little did I know that my search for "Evil Genius" on Google this morning would lead me to you. Again.
Saturday, November 12, 2005
How I Got My Diagnosis
It's last Wednesday. I have been sitting in the epilepsy ward of the Lahey Clinic. A couple dozen multicolored wires have been super glued to my head, I am being monitored and video taped 24/7 and have a long tether which connects the probes to the wall. My laptop and cell phone have been taken away. Apparently use of the latter two objects cause the EEG probes to read them as seizures. After the first time the crash cart arrived in my room and found me reading Kos, they took them away from me.
They are used to patients who have large dramatic seizures, are old or cannot take care of themselves. They have twice threatened me with restraints if I get up and go to the bathroom on my own. They are trying to take charge of my insulin regime and had, at that point, managed to make a has of it. I threatened to walk out and sue of they didn't let me do my insulin myself. They relented and I give myself all my injections (even apart from insulin). The staff and I have a fragile détente. AFAIK there has been no progress on my diagnosis except to rule out metal poisoning.
I get a call on my plastic, wired room phone which has so far, only range once:
Me: hello?
MS Person: Hi this is Mrs. X from MS Benefits! We just got your diagnosis and wanted to let you know that I'll be your case worker. I work for Premera and will help you steer through all the paperwork, appointments and therapy. I need to get some information from you is that okay?
Me:Well, I'm in the hospital, and I don't have anything else to do ...
MSP: Great. You're Mark Horvath.
Me: Yes.
MSP: You're currently in the Lahey Clinic Room 7W30?
Me: Yes
MSP: You're employee Number is XXXXXX. Your Birthday is 8/2/64?
Me:Yes.
[After more info exchange]
MSP: Terrific, thanks Mark. Now I'd like to get you set up with a doctor here who specializes in your condition, unless you have someone you're already seeing.
Me: No. No one in Seattle. What do you have down as my diagnosis?
MSP: Oh, Multiple Sclerosis. Why?
Me: ... oh. They hadn't told me that.
MSP: (Oh SHIT Silence)..... .... ....
Me: So who would you recommend I see out there?
MSP: I'm sorry, I thought they told you. I'm not supposed to give diagnosis to patients.
Me: No problem, I'm seeing the doctors this afternoon anyway. Are there specialists in Seattle.
MSP:oh Yes! Overlake has a whole facility. Would you like me to schedule you an appointment with the head of neurology?
Me: yes please....
and so, in violation of HIPAA, GLB and a variety of other laws, MS Benefits and their cost-controlling eager-beaverism gave me my diagnosis of MS. I talked to my doctors later and went through a bunch of things with them. MS is their current working hypothesis, although after reviewing the tapes they *strongly* recommended I go get a test for Huntington's. They wouldn't run it there because, by federal law, there needs to be "genetic counseling" with a Huntington's test and, since I was moving to Seattle, they felt they could not provide this. They did give me some print outs of where I could get this done and re-emphasized that I should do this sooner rather than later, "just in case".
and there it is.
I doubt the Huntington's hypothesis just because AFAIK, my father doesn't have it. This assumes my father is actually my biological father which I have not has cause to doubt until this week.
OTOH, it would explain a few things....
Anyway, that's the story. All other things being equal, I have MS, just like my sister.
They are used to patients who have large dramatic seizures, are old or cannot take care of themselves. They have twice threatened me with restraints if I get up and go to the bathroom on my own. They are trying to take charge of my insulin regime and had, at that point, managed to make a has of it. I threatened to walk out and sue of they didn't let me do my insulin myself. They relented and I give myself all my injections (even apart from insulin). The staff and I have a fragile détente. AFAIK there has been no progress on my diagnosis except to rule out metal poisoning.
I get a call on my plastic, wired room phone which has so far, only range once:
Me: hello?
MS Person: Hi this is Mrs. X from MS Benefits! We just got your diagnosis and wanted to let you know that I'll be your case worker. I work for Premera and will help you steer through all the paperwork, appointments and therapy. I need to get some information from you is that okay?
Me:
MSP: Great. You're Mark Horvath.
Me: Yes.
MSP: You're currently in the Lahey Clinic Room 7W30?
Me: Yes
MSP: You're employee Number is XXXXXX. Your Birthday is 8/2/64?
Me:
[After more info exchange]
MSP: Terrific, thanks Mark. Now I'd like to get you set up with a doctor here who specializes in your condition, unless you have someone you're already seeing.
Me: No. No one in Seattle. What do you have down as my diagnosis?
MSP: Oh, Multiple Sclerosis. Why?
Me: ... oh. They hadn't told me that.
MSP: (Oh SHIT Silence)
Me: So who would you recommend I see out there?
MSP: I'm sorry, I thought they told you. I'm not supposed to give diagnosis to patients.
Me: No problem, I'm seeing the doctors this afternoon anyway. Are there specialists in Seattle.
MSP:
Me: yes please....
and so, in violation of HIPAA, GLB and a variety of other laws, MS Benefits and their cost-controlling eager-beaverism gave me my diagnosis of MS. I talked to my doctors later and went through a bunch of things with them. MS is their current working hypothesis, although after reviewing the tapes they *strongly* recommended I go get a test for Huntington's. They wouldn't run it there because, by federal law, there needs to be "genetic counseling" with a Huntington's test and, since I was moving to Seattle, they felt they could not provide this. They did give me some print outs of where I could get this done and re-emphasized that I should do this sooner rather than later, "just in case".
and there it is.
I doubt the Huntington's hypothesis just because AFAIK, my father doesn't have it. This assumes my father is actually my biological father which I have not has cause to doubt until this week.
OTOH, it would explain a few things....
Anyway, that's the story. All other things being equal, I have MS, just like my sister.
Monday, November 07, 2005
Possible Downtime
I'm off to Lahey this morning. While it's possible they have a wireless connection I can ride, I'm not counting on it. Updates, in theory Friday.
Bremsstrahlung
I bought City of Heros this weekend (possibly for use at Lahey if there is an internet connection there, although my hopes are low) and it was fantastic. This is the first on-line RPG I've ever played and it was not as intimidating as I thought it would be. I figured everyone would be better at everything than me (kind of like gym class), but there were lots of low level folks to help me along and plenty of things to do on my own. Once or twice though I got stuck in an area of the city where I was so overmatched by level 20 street thugs it took me several lives to get out.
I put together a "science hero" with broad based electrical powers and good all over stats (a blaster), complete with blue spandex tights. I'm sure everyone else recognized it as a first avatar, but it wasn't too bad. I decided to name him Bremsstrahlung after a type of astrophysical radiation common in the interstellar medium. Much to my total surprise, it was taken! I was totally floored! It was like naming your baby Chlamydia and finding out that someone else took it. I ended up naming him AXAF after the satellite of the same name, however, I have started thinking about some names:
Captain Physics
Blue Screen of Death
Colonel Panic
Major Trouble
Chlamydia the Hilarious Clown
I am happily taking suggestions (with suggestions for powers)
I put together a "science hero" with broad based electrical powers and good all over stats (a blaster), complete with blue spandex tights. I'm sure everyone else recognized it as a first avatar, but it wasn't too bad. I decided to name him Bremsstrahlung after a type of astrophysical radiation common in the interstellar medium. Much to my total surprise, it was taken! I was totally floored! It was like naming your baby Chlamydia and finding out that someone else took it. I ended up naming him AXAF after the satellite of the same name, however, I have started thinking about some names:
Captain Physics
Blue Screen of Death
Colonel Panic
Major Trouble
Chlamydia the Hilarious Clown
I am happily taking suggestions (with suggestions for powers)
Guantanamo Bay Diet
Posted without comment:
It hasn't received much coverage in the mainstream media - at least not in America anyway - but it's currently reckoned that about 200 of the inmates at Guantanamo Bay are taking part in a hunger strike which is eliciting concern from the International Red Cross.
Why are they doing this? Because they want to be treated in a manner consistent with the Geneva Conventions. Best of luck with that one.
Of course the military have put their own spin on the situation, calling the hunger strike a "voluntary fast," with a mere 26 participants. 21 of those participants have apparently been hospitalized for "assisted feedings" via a tube placed up the nose and down the throat. According to The Nation:
...someone committed to self-starvation could easily remove such a tube, if he had any freedom of movement. So we can surmise that there is a line of twenty-one hospital beds, each with a prisoner held tight in four-point restraints. His head must be strapped down, immobile, and forcible sedation seems probable. Hardly the image evoked by the term "assisted feeding."
Thank goodness Donald Rumsfeld is here to explain the situation more clearly. Last week he told reporters, "There are a number of people who go on a diet where they don't eat for a period and then go off of it at some point. And then they rotate and other people do that."
So let me get this straight... down at Six Flags Guantanamo Bay the inmates have "never been treated better;" in fact we're feeding them so much honey-glazed chicken and lemon-baked fish that every so often they decide to go on a diet!
George Orwell must be vomiting in his grave.
It hasn't received much coverage in the mainstream media - at least not in America anyway - but it's currently reckoned that about 200 of the inmates at Guantanamo Bay are taking part in a hunger strike which is eliciting concern from the International Red Cross.
Why are they doing this? Because they want to be treated in a manner consistent with the Geneva Conventions. Best of luck with that one.
Of course the military have put their own spin on the situation, calling the hunger strike a "voluntary fast," with a mere 26 participants. 21 of those participants have apparently been hospitalized for "assisted feedings" via a tube placed up the nose and down the throat. According to The Nation:
...someone committed to self-starvation could easily remove such a tube, if he had any freedom of movement. So we can surmise that there is a line of twenty-one hospital beds, each with a prisoner held tight in four-point restraints. His head must be strapped down, immobile, and forcible sedation seems probable. Hardly the image evoked by the term "assisted feeding."
Thank goodness Donald Rumsfeld is here to explain the situation more clearly. Last week he told reporters, "There are a number of people who go on a diet where they don't eat for a period and then go off of it at some point. And then they rotate and other people do that."
So let me get this straight... down at Six Flags Guantanamo Bay the inmates have "never been treated better;" in fact we're feeding them so much honey-glazed chicken and lemon-baked fish that every so often they decide to go on a diet!
George Orwell must be vomiting in his grave.
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