First of all I would like to remark on the aftermath of my insurance company refusing to pay for my medical help at John Hopkins Medical. That Monday after I had left their office after receiving the bad news, my contact person at Unive emailed my psychotherapist, saying that he might want to contact me to help me deal with it.
My therapist replied with a message informing Unive that it seems to him like he got asked to clean up the mess Unive made. He pointed out that if Unive thinks that I need help, then they should provide it. If they take the wrong decision and things happen because of it, then it's their responsibility. He finished the message by noting that he didn't understand Unive's logic in arriving at the conclusion not to pay for my medical costs at JHM, as it seems very unwise to him.
Anyway, it's always nice to have someone confirm that you are not crazy, and that it's those 'others' who should do a reality check. Meanwhile things are JHM are progressing slowly. I got a coordinator assigned, one Beenu T. Gupta, who will now take care of communication in my case. Yesterday I got an email from him in which he discussed the steps which still have to be taken. He sent me a few PDFs as attachments which contained the documents I had scanned in, as well as the summaries in my case I have listed on my website.
To be honest I have never had any interest for those documents from medical people at all, so to see JHM actually including them as part of their evaluation material is both refreshing and confidence inspiring. Gupta's questions included whether the report on kariotype testing was included in one of these PDFs, which was the case, as well as the latest physical examination report, which is more or less the case, as quite a few people at various hospitals have touched me over the past few years. Those were included too.
The MRI reports were the last items on the list, which I told him are included in the MRI viewer program which comes with the MRI scan files I provided. He was talking about him having received one MRI scan, while there should be three, which I pointed out. He did mention that he had received the 2009 scan, which is the one made at the Erasmus MC hospital in Rotterdam, and which is of good quality, so it's no matter of only that one gets used. The German scan is relatively blurry in comparison, and the one taken later at the OLVG hospital in Amsterdam is more limited, although it might be useful too as another imaging method was used.
These Dutch reports will all have to be translated, which will add to the $1,350 I was quoted for the MSO itself. As I do not know of a medical translator who can do it cheaply, I'll just leave it to the JHM to arrange it and pay whatever they ask. I trust that it can't be that unreasonable. I was quoted 2 days to get the price quote and 5-7 working days for the translation itself. Hopefully by the end of next week everything will be translated, then, and the MSO can get started.
I keep having to remind myself that things are moving ahead much faster than with any previous hospital, but it's so hard to wait at this stage. What did reassure me somewhat, though, was one line in Gupta's email, in which he stated that the physicians involved in my case (an endocrinologist and a psychiatrist) might decide to either give a remote consult or wish to see me in person. This seems to hint at that they do seem to take things seriously, as they wouldn't require me to fly over for a mere chat. It seems to hint at the possibility of further research and examinations.
In other news, I finally got an email response from Anne Fausto-Sterlin, Nancy Duke Lewis Professor of Biology and Gender Studies at Brown university, in which she basically couldn't tell me anything other than what I already knew from others.
"I am sorry to have taken so long to get back to you. i consulted with various clinicians I know (I am neither a clinician nor a physician) and they all seemed to feel that the best clinic in Europe is in Amsterdam, the one I presume you have already contacted. They also feel there is nothing better or different in the US. The only other suggestion was for a group in Germany: Dr. Olaf Hiort in Luebeck, Germany, runs the leading intersex program in Europe.
"Sorry not to be of more help."
The Amsterdam clinic is the VUMC which got me my PTSD and where this person supposedly very knowledgeable about intersexuality (Dr. Cohen-Kettenis) refused to even look at my case because 'her team' had decided I couldn't possibly be intersexual. The German hospital mentioned I have contacted a few years ago, but they cut off contact; I never got past their bloody secretary. The doctor who was supposed to contact me never did, and the secretary ignored me after a few emails.
There is nothing negative I can say about JHM yet. Even if people at IS 'support' organizations never refer to them, I'd say that they're A-OK in my book at this point. In my experience people at IS organizations are useless and those who supposedly specialize in IS are insensitive, uncaring jerks who are only good at traumatizing people with IS while those need so much care and attention as their experiences have made them generally quite fragile. It's something I have noticed with many IS people I have met over the years, and I think it's scandalous that those who specialize in treating people with IS could treat them this horribly. It's beyond sickening.
Even if this JHM experience ends up bankrupting me, it will have done more good for me than any hospital so far. Except maybe those German clinics who confirmed that I'm IS, and where I was treated with respect instead of as a piece of filthy garbage. Why do you reckon I have so low self-esteem, and do not believe there is a place for me in this world? It's all thanks to the excellent care by Dutch, Belgian and UK hospitals and clinics. They're a scourge to humanity.
Maya
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