I just recovered from a paralyzation attack. I haven't had one of these in months. This one lasted half an hour, and was preceded by crying for about an hour. I didn't realize I was suffering paralysis again until I found myself crawling on the ground again and was barely able to get myself more or less sitting on a couch before it fully struck.
It's a clear indication that the stress I'm under has reached new levels. The probable cause is strangely enough John Hopkins Medical's apparent willingness to help me, and the many uncertainties which result from this. This is unknown territory for me, and over six years of experiences are yelling at me that nothing has changed, that they'll soon tell me something which will cast me back into this dark cellar I have grown accustomed to during the past fifteen years.
Either JHM will tell me that they won't have time for me until many months from now, in which case it's game over for me, or they'll require me to pay up in advance again and there'll be no way for me to collect that kind of money, or I'll somehow get there and they'll start treating me like those twisted shades of people we call Dutch physicians. It's got to be one of those, right?
I mean, it's not possible that I'll manage to get to Maryland, get examined there and receive a satisfactory diagnosis and treatment plan. There's no chance that'll happen. I'm just clinging to false hopes here. Nothing could have prepared me for this: feeling so intensely torn between the shreds of hope and years of bitter and traumatic experiences.
I hope I can get some assurances out of JHM the coming time, and I hope they understand the urgent nature of my case here. If one of those three doom scenarios were to occur, I have this sinking feeling that it'll most likely be fatal to me. I can only reason with my subconsciousness to some extent, and if any of those scenarios were to occur I'm quite sure it'd definitely push me over the edge.
I'm afraid. I'm terrified. I'm trembling and shivering. I'm crying.
These last steps towards potential salvation are the hardest in my life so far.
Maya
Saturday, 30 April 2011
Wednesday, 27 April 2011
Surfin' USA
This post is filled with happy news to the point of overflowing. Please be advised and forewarned.
First of all, I got the first money from my Bbz welfare thing yesterday, a few hours after I posted my previous blog entry. So far I got 2.5 months out of 3.5. It's a welcome infusion of funds. Now to make my insurance company pay up as well and all will be fine.
Moving on, a few moments ago I received an email from my coordinator at John Hopkins Medical, in which she told me the following:
"Our Medical Director and another physician (Director, Division of Reproductive Endocrinology & Infertility) has reviewed your case informally. They have assessed all the medical documents, test results, physical examination reports, Radiology studies and the relevant documents. They have come to the conclusion that this case is unfortunately not appropriate for remote written consult. However, if you would like to come for an in-person appointment, we can engage our International Patient Services, Europe Division and will forward the case to them. They will assign your case to one of the International Care Coordinators who will work closely with you pertaining to the upcoming treatment visit."
She also told me that I'll get the remainder of the budget I transferred to them refunded. Since they reviewed the case informally I only have to pay for the translations. In short this means that not only did I pay less than expected so far (just over EUR 600 for the translations), but they are also essentially acknowledging that the Dutch hospitals haven't done enough yet and couldn't have drawn the conclusions they did with the available data.
It also means that I'll be working together with this new coordinator to plan my visit to JHM. I can't say anything about this yet, but I do hope that they'll have me over for a while, run the proper examinations and tests, try to answer all questions raised based on the clinical symptoms, and maybe even plan in some room for possible treatment/surgery, specifically labia surgery in case it turns out that I do have a usable vagina.
As can be imagined, on one hand I'm intensely relieved that they didn't outright reject my case and are seemingly interested in getting to the bottom of things. On the other hand I'm anxious and apprehensive about what will come next, both with the planning involved in traveling to the US and the logistics there, but also with my work. Whether I require a new laptop, which tasks I can and can't do while over there, etc. etc.
And of course the major question is when. When I saw the photography student I'm doing the project with yesterday and last Friday, she told me that the exhibition is from July 1st until the 3rd. I would love to be present there. It would be right for me to be there, so I hope that I can visit JHM during May and/or June. Also with an eye on my intake appointment at the UZ Gent hospital in Belgium on August 1st. I'd like to be able to cancel that appointment in the knowledge that I really won't need them any more.
In all of this what shines through the most is the incredible difference between Dutch and US physicians. Not only are the latter considerably less greedy, they're also clearly more focused on solving problems and not just dealing with symptoms. Heck, so far JHM has treated me like an actual person, with my current coordinator being actually nice and showing concern, and the physicians involved being honest and professional.
I feel a lot more justified in rebelling against the Dutch 'healthcare' system now.
Maya
First of all, I got the first money from my Bbz welfare thing yesterday, a few hours after I posted my previous blog entry. So far I got 2.5 months out of 3.5. It's a welcome infusion of funds. Now to make my insurance company pay up as well and all will be fine.
Moving on, a few moments ago I received an email from my coordinator at John Hopkins Medical, in which she told me the following:
"Our Medical Director and another physician (Director, Division of Reproductive Endocrinology & Infertility) has reviewed your case informally. They have assessed all the medical documents, test results, physical examination reports, Radiology studies and the relevant documents. They have come to the conclusion that this case is unfortunately not appropriate for remote written consult. However, if you would like to come for an in-person appointment, we can engage our International Patient Services, Europe Division and will forward the case to them. They will assign your case to one of the International Care Coordinators who will work closely with you pertaining to the upcoming treatment visit."
She also told me that I'll get the remainder of the budget I transferred to them refunded. Since they reviewed the case informally I only have to pay for the translations. In short this means that not only did I pay less than expected so far (just over EUR 600 for the translations), but they are also essentially acknowledging that the Dutch hospitals haven't done enough yet and couldn't have drawn the conclusions they did with the available data.
It also means that I'll be working together with this new coordinator to plan my visit to JHM. I can't say anything about this yet, but I do hope that they'll have me over for a while, run the proper examinations and tests, try to answer all questions raised based on the clinical symptoms, and maybe even plan in some room for possible treatment/surgery, specifically labia surgery in case it turns out that I do have a usable vagina.
As can be imagined, on one hand I'm intensely relieved that they didn't outright reject my case and are seemingly interested in getting to the bottom of things. On the other hand I'm anxious and apprehensive about what will come next, both with the planning involved in traveling to the US and the logistics there, but also with my work. Whether I require a new laptop, which tasks I can and can't do while over there, etc. etc.
And of course the major question is when. When I saw the photography student I'm doing the project with yesterday and last Friday, she told me that the exhibition is from July 1st until the 3rd. I would love to be present there. It would be right for me to be there, so I hope that I can visit JHM during May and/or June. Also with an eye on my intake appointment at the UZ Gent hospital in Belgium on August 1st. I'd like to be able to cancel that appointment in the knowledge that I really won't need them any more.
In all of this what shines through the most is the incredible difference between Dutch and US physicians. Not only are the latter considerably less greedy, they're also clearly more focused on solving problems and not just dealing with symptoms. Heck, so far JHM has treated me like an actual person, with my current coordinator being actually nice and showing concern, and the physicians involved being honest and professional.
I feel a lot more justified in rebelling against the Dutch 'healthcare' system now.
Maya
Tuesday, 26 April 2011
Progress, And Lack Thereof
Allow me to start with the bad news: after over three months I still haven't seen a single cent from this Bbz welfare thing I got accepted for a few weeks ago. I requested it January 19th, and I got approved for 6 months of welfare.
A similar story with my health insurance company; they are still pretending to be busy while ignoring the approval for full coverage of electrolysis therapy, this after I got them the official request from my GP well over a month ago. If both instances were to actually do their job, I would have over 5,000 Euro in my bank account. As things stand now I have a few hundred Euro to spend before I'm fully broke. Most depressing.
At John Hopkins Medical meanwhile things have been grinding to a halt as well, with my coordinator going on vacation for a week (returning today), and another coordinator promising to check with the physician who currently has my case and not following up on this. I'm becoming intensely allergic to people not doing their job as of late.
In the mean time I have finished the fourth and fifth chapter rewrite of my In Between And Neither novel, updated my personal site, launched the new Nyanko company website, finished, tested and released the NyanKana: Kana Memorized game for the Android platform (see http://www.nyanko.ws/game_nk_km.php), finalized the resource cooker utility for the game engine, finished a server monitoring script for another company, created a flashcard game for a friend, and spent some time with the photography student doing photoshoots.
I'm currently working on porting the NyanKana game to Windows, as well as creating a more advanced resource cooker utility. Naturally I'm also still working on the TileWars game itself. I'm further working out the details regarding my migration to Australia, something which depends heavily on JHM wrapping up my case within a few months time.
Life isn't easy, and life isn't fun. Definitely not at the moment. I don't even want to think about how much I hate my current situation, and instead try to focus completely on improving my situation by throwing myself at my work. I can feel no appreciation for anything else any more. The only one interested in progressing my life is me. And the handful of people who care about me.
I spend the hours when I'm not engrossed in some part of my work feeling depressed, haunted and exhausted to the point where I feel like crying continuously. I feel like I'm stranded in the midst of an ocean, clutching to this single log of wood which is keeping me afloat, and all the ships I have seen so far have passed me by. It's lonely out here.
Maya
A similar story with my health insurance company; they are still pretending to be busy while ignoring the approval for full coverage of electrolysis therapy, this after I got them the official request from my GP well over a month ago. If both instances were to actually do their job, I would have over 5,000 Euro in my bank account. As things stand now I have a few hundred Euro to spend before I'm fully broke. Most depressing.
At John Hopkins Medical meanwhile things have been grinding to a halt as well, with my coordinator going on vacation for a week (returning today), and another coordinator promising to check with the physician who currently has my case and not following up on this. I'm becoming intensely allergic to people not doing their job as of late.
In the mean time I have finished the fourth and fifth chapter rewrite of my In Between And Neither novel, updated my personal site, launched the new Nyanko company website, finished, tested and released the NyanKana: Kana Memorized game for the Android platform (see http://www.nyanko.ws/game_nk_km.php), finalized the resource cooker utility for the game engine, finished a server monitoring script for another company, created a flashcard game for a friend, and spent some time with the photography student doing photoshoots.
I'm currently working on porting the NyanKana game to Windows, as well as creating a more advanced resource cooker utility. Naturally I'm also still working on the TileWars game itself. I'm further working out the details regarding my migration to Australia, something which depends heavily on JHM wrapping up my case within a few months time.
Life isn't easy, and life isn't fun. Definitely not at the moment. I don't even want to think about how much I hate my current situation, and instead try to focus completely on improving my situation by throwing myself at my work. I can feel no appreciation for anything else any more. The only one interested in progressing my life is me. And the handful of people who care about me.
I spend the hours when I'm not engrossed in some part of my work feeling depressed, haunted and exhausted to the point where I feel like crying continuously. I feel like I'm stranded in the midst of an ocean, clutching to this single log of wood which is keeping me afloat, and all the ships I have seen so far have passed me by. It's lonely out here.
Maya
Wednesday, 13 April 2011
The Illusion Of Help
The past few months I have spent quite a bit of time on forums and IRC channels where people on the autistic spectrum gather, in particular those with Asperger's. I can only say that what I have heard there has shocked me.
One thing in particular irks me beyond comprehension, that of how these people have been suckered into believing that there is somehow something wrong with them, and that they need a diagnosis and therapy. That they are the ones who need help. Let me review the facts about Asperger in particular.
Aspies, as they are commonly called, are characterized by a higher than average intelligence, a strong focus on intellect over emotions, enjoy analyzing and solving problems and have very strong empathy. They generally end up becoming scientists, or somehow involved in with technology. Areas where they can apply their skills to their utmost, as well as avoid the rest of the world.
'Normal' people, or Neuro-Typicals (NTs) as they're officially called, are in short impulsive, irrational, highly emotional and prone to poor decisions. They are highly emotional, with a strong preference for an emotionally-charged way of reasoning. They have quite poor analytical abilities and problem-solving skills. Their ability to empathize with others is hampered by their strong emotions.
Just looking at this comparison, it seems logical to suggest that the former category are normal, well-adjusted individuals, whereas the second category are borderline psychotics, in need of adjustment therapy and counseling to help them fit into society. This essentially sums up why I think it is ridiculous that Aspies are treated the way they are. They are normal, nice, intelligent and kind. Even if they end up saying something not nice to another person, they'll realize this and apologize, not push it away.
Of course, what is or isn't an Aspie is hardly a strict definition. In general it are people who fit the above criteria, as well as some or most of those in DSM-IV, the official standard in diagnosing psychological conditions and kind. I have found that no Aspie is alike, but that they do broadly share those characteristics. The 'intellect before emotion' criteria seems to be the most prevalent.
This way of thinking has led me to refuse to further have contact with psychologists and kin here in the Netherlands who were supposed to 'help' me with my 'Asperger's'. First of all I'm quite certain that my Asperger's was triggered or caused by the way my environment has treated me due to my intersexuality, by making it impossible to develop emotionally, and forcing me to use my intellect to survive. Secondly, what is causing my PTSD to trigger and me to feel uncomfortable, even frightened and uncertain to the point of feeling terrorized is not something called Asperger's. What is causing this is how my environment is treating me.
There is nothing wrong with me. I'm a normal, kind, intelligent and well-adjusted person who wants no harm to befall to others, is more than willing to work towards the good of humankind and generally quite harmless. What isn't normal is how my insurance company for example refuses to pay for coverage for medical examinations in the USA which will hugely improve my quality of life.
What also isn't normal how this same insurance company is now lagging about two months behind on covering the costs I have made related to electrolysis therapy, something for which my GP has provided an official request and which they are thus bound to cover. There is no reasoning with this company, and it's hugely frustrating.
Something similar with government instances. I requested a form of welfare called the Bbz which is aimed at entrepreneurs and which I have had before, until last year September. I requested it on January 19th, and now nearly 3 months later it still hasn't been officially approved. Over two months ago I heard from the guy who came to look over my administration and work on the TileWars game so far that he'd recommend it'd be approved for 6 months. It's now 3 months later or half of that period during which I was supposed to receive welfare, and I haven't received a single cent yet.
There is rhyme nor reason to these systems. It's rules and regulations which are applied haphazardly, there is no empathy, no efficiency. In many ways it reminds me of the bureaucracy scenes from the movie Idiocracy, which really isn't a flattering comparison, believe me. They do not wish to help me. They just want to follow the tracks which have been laid out for them.
My plan for the coming weeks and months now looks something like this: trying to somehow finance the whole John Hopkins Medical undertaking, assume that they'll want to examine me in person because they are competent and thorough. With that all arranged and settled and with possibly a surgery performed, I'll continue working on my finances, with hopefully a game or two published from which I can draw funds.
Another big wish of mine is to leave this country forever. Hearing others who have already migrated talking about how they'd never want to return and how cold and uncaring the Netherlands is, it just makes me realize even more how there is nothing for me in this country. The hospitals are worthless, even harmful, as is the rest of the healthcare system. The bureaucracy is terrible and choking, making it altogether a horrible place to be, especially for someone in a fragile situation like me.
My current pick from possible destination countries is Australia. I know a fair number of people there, the climate is nice (in the right spots), it's near Asia which is a big bonus, they use 230VAC for their power grid like civilized countries and it's very welcoming towards immigrants and new businesses. In pretty much every way it's a perfect fit. The only thing holding me back at the moment is the funding.
In the end everything is about money...
Maya
One thing in particular irks me beyond comprehension, that of how these people have been suckered into believing that there is somehow something wrong with them, and that they need a diagnosis and therapy. That they are the ones who need help. Let me review the facts about Asperger in particular.
Aspies, as they are commonly called, are characterized by a higher than average intelligence, a strong focus on intellect over emotions, enjoy analyzing and solving problems and have very strong empathy. They generally end up becoming scientists, or somehow involved in with technology. Areas where they can apply their skills to their utmost, as well as avoid the rest of the world.
'Normal' people, or Neuro-Typicals (NTs) as they're officially called, are in short impulsive, irrational, highly emotional and prone to poor decisions. They are highly emotional, with a strong preference for an emotionally-charged way of reasoning. They have quite poor analytical abilities and problem-solving skills. Their ability to empathize with others is hampered by their strong emotions.
Just looking at this comparison, it seems logical to suggest that the former category are normal, well-adjusted individuals, whereas the second category are borderline psychotics, in need of adjustment therapy and counseling to help them fit into society. This essentially sums up why I think it is ridiculous that Aspies are treated the way they are. They are normal, nice, intelligent and kind. Even if they end up saying something not nice to another person, they'll realize this and apologize, not push it away.
Of course, what is or isn't an Aspie is hardly a strict definition. In general it are people who fit the above criteria, as well as some or most of those in DSM-IV, the official standard in diagnosing psychological conditions and kind. I have found that no Aspie is alike, but that they do broadly share those characteristics. The 'intellect before emotion' criteria seems to be the most prevalent.
This way of thinking has led me to refuse to further have contact with psychologists and kin here in the Netherlands who were supposed to 'help' me with my 'Asperger's'. First of all I'm quite certain that my Asperger's was triggered or caused by the way my environment has treated me due to my intersexuality, by making it impossible to develop emotionally, and forcing me to use my intellect to survive. Secondly, what is causing my PTSD to trigger and me to feel uncomfortable, even frightened and uncertain to the point of feeling terrorized is not something called Asperger's. What is causing this is how my environment is treating me.
There is nothing wrong with me. I'm a normal, kind, intelligent and well-adjusted person who wants no harm to befall to others, is more than willing to work towards the good of humankind and generally quite harmless. What isn't normal is how my insurance company for example refuses to pay for coverage for medical examinations in the USA which will hugely improve my quality of life.
What also isn't normal how this same insurance company is now lagging about two months behind on covering the costs I have made related to electrolysis therapy, something for which my GP has provided an official request and which they are thus bound to cover. There is no reasoning with this company, and it's hugely frustrating.
Something similar with government instances. I requested a form of welfare called the Bbz which is aimed at entrepreneurs and which I have had before, until last year September. I requested it on January 19th, and now nearly 3 months later it still hasn't been officially approved. Over two months ago I heard from the guy who came to look over my administration and work on the TileWars game so far that he'd recommend it'd be approved for 6 months. It's now 3 months later or half of that period during which I was supposed to receive welfare, and I haven't received a single cent yet.
There is rhyme nor reason to these systems. It's rules and regulations which are applied haphazardly, there is no empathy, no efficiency. In many ways it reminds me of the bureaucracy scenes from the movie Idiocracy, which really isn't a flattering comparison, believe me. They do not wish to help me. They just want to follow the tracks which have been laid out for them.
My plan for the coming weeks and months now looks something like this: trying to somehow finance the whole John Hopkins Medical undertaking, assume that they'll want to examine me in person because they are competent and thorough. With that all arranged and settled and with possibly a surgery performed, I'll continue working on my finances, with hopefully a game or two published from which I can draw funds.
Another big wish of mine is to leave this country forever. Hearing others who have already migrated talking about how they'd never want to return and how cold and uncaring the Netherlands is, it just makes me realize even more how there is nothing for me in this country. The hospitals are worthless, even harmful, as is the rest of the healthcare system. The bureaucracy is terrible and choking, making it altogether a horrible place to be, especially for someone in a fragile situation like me.
My current pick from possible destination countries is Australia. I know a fair number of people there, the climate is nice (in the right spots), it's near Asia which is a big bonus, they use 230VAC for their power grid like civilized countries and it's very welcoming towards immigrants and new businesses. In pretty much every way it's a perfect fit. The only thing holding me back at the moment is the funding.
In the end everything is about money...
Maya
Monday, 4 April 2011
JHM Translation Costs
I just got an email from my coordinator at John Hopkins Medical regarding the details about the translation of the medical reports. Total costs are US$824. The total budget I have wired them so far is $1,492 and the physicians cost $1,350, leaving a gap of $682 (EUR 480). This will have to be wired to JHM before the physicians can render their opinion. Probably by Friday, maybe next week Monday, as the translation is expected to take 4 business days.
The annoying thing is that I am very nearly capable of paying for this myself, with my Bbz welfare nearly arranged after a very long delay, and with me in the process of getting back the few thousand Euro from my insurance company I paid for electrolysis therapy. Whether I'll see any of this money before Friday is very much in doubt. If not I may have to borrow money again.
Maya
The annoying thing is that I am very nearly capable of paying for this myself, with my Bbz welfare nearly arranged after a very long delay, and with me in the process of getting back the few thousand Euro from my insurance company I paid for electrolysis therapy. Whether I'll see any of this money before Friday is very much in doubt. If not I may have to borrow money again.
Maya
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