Note: What Luck? [I don't want to think too positively]

Slightly off topic, but I've always wondered what exactly it is they "shrink"....

...The neurology department situation, however, is so close to being my worst nightmare- crafted specifically for me and my fears and my specific brand of OCD- the bits that revolve around those fears.

No melodrama there at all. My usual instinct in this situation is to cancel any and all neurology appointments. ...however, my psychiatrist is LITERALLY right across the hall from neurology. Even though we've only had a few appointments, I feel like if he had to he would likely drag me over and sit with me in an appointment. I don't really need that to happen, and I know I need a new neurologist.

Unfourtunately the current set up for my experience in neurology is constructed to push the knife in further with all these semi-traumatic doctor experiences and just twist it. Because?
...the worst doctor I have EVER had, hands down, is now one of the senior doctors in the department and the ONLY records they seem to be able to get their hands on at this point are the records from over a decade ago- his. Which, really, are defamatory and full of straight up lies because I'm "crazy" and he doesn't seem to get on well with crazy people.

And if I tell people that, they kind of look at me funny because it's something a crazy person would say because they are crazy, so this is a no win situation. But if one has other records to compare those records to, it's clear something is amiss. Only, for some reason the records which had already been forwarded like well over a month ago are somehow not there.

FLIPPING MY EVERLOVING SH- RIGHT NOW.

This is real repeated experience that is reinforced ever time some doctor is invalidating and just oppresses my voice and treats me like a non-human being. So yes, saying at this point that it's traumatic is not an exaggeration for me. If you have not had this experience [and I would bet a lot have] imagine you are trying to express real physical distress and you keep being treated like other people won't listen because you are less important. Imagine that happening over and over and over with many individuals who are supposed to help you in the same kind of system- even pretending to be sympathetic and it's clear later on they were actually lying to you [pretending sympathy but really writing things critical of your state of mind or your assessment of your own life or situation though not sharing these thoughts with you] and witholding information. Eventually you get scared of these people and have anxiety and some kind of fear reaction when you have to deal with this situation. Anytime it's negative that anxiety and fear response is reinforced.

It also gets tangled with my OCD- particularly the issues I have with A: not being believed and B: fear of accidentally lying.

So going to new doctors anyway is a freaking nightmare.
I'm going to have to struggle to not cancel the appointment and actually show up.
And try to get the records there.

I kind of am back to hating everything. Not really, it would just be easier.
"Stop worrying" "Just say to yourself ____"

It's NOT that easy.

So what you are saying is...they didn't shrink anything?

Seriously though it sounds like you are getting the shaft, and possibly other things.

If it isn't too personal, can I ask what kind of"defamatory" things? I mean that is a tough situation to be in, I really hope there is someone you can report that to. If your psychiatrist is inclined to believe what you are telling him, perhaps he can help you if he is given the opportunity to review said documents and dispute what is in them? At least with that there is some possibility that the record can be set straight I hope. I'm sorry this is proving so difficult for you, I wish there was some advice I could give to help, but that really is a hard place to be in.

I actually already told the psychiatrist a lot of what is in the notes and he doesn't seem convinced [about the notes] after having talked to me and meeting with me a few times or at least.
He has access to them and is likely looking them up and i have no problem with that.

He's also gone through some of the old notes from other doctors and been like "ok we need to take this crap out..." ha.

So, I'm not concerned about him really trusting what is in the neurology notes over what I'm telling him or compared to his interactions with me. I am concerned about, basically, getting poor treatment in neurology. Both as just a person and as a patient who needs appropriate care.

And, I really just... I can't deal with that anymore.

The shrinking is like, shrinking your head/brain but I don't really know where that came from?
Now I feel like I should go look.

I understand what you are saying, and it's wrong (of them) to treat you that way.

It reminds me of a friend I once had was diagnosed with tubular aggregate myopathy. When it came time to be treated to manage pain no doctor wanted to give him the treatment he needed because of his appearance (heavily modified / tattooed), so he was denied a lot of treatment because he was basically assumed to be a drug addict because of his appearance. I feel like that somewhat applies here, your level of treatment is being affected by what is an emotional based response to something someone wrote on a chart. You were labeled "crazy" and somehow this entitles you to less, and that is ********.

It sounds like the psychiatrist has your back. But if push comes to shove and he can't "remove" those items from your medical records I would raise hell. There has to be someone that can fight on your behalf, like a patient advocate or something.

Thank you for responding, everyone or just letting me know you are reading.

But also, I want to disappear haha.
I don't want to make a new entry- I feel like that would draw more attention. I'm drawing too much attention all the time.

I was telling A B last night [i think? maybe] that I lost two jobs because of OCD- but I'd like, not remembered. It was more than two years ago, approx.

But, yet I have a hard time being like "ok yeah, it's so *severe* ooohh..." I also feel like being so dramaramallama about everything can make other people feel like somehow invalidated if they experience the same or similar and that's not my intention. But, I'm constantly on high alert really. So all this crap is constantly in my face right now.

I don't know what to do except feel like a pain in the ass. YAY.

haha. I think I need to go make some coffee. Because stimulants always help. right? of course right. :]

I'm going to try to be all annoying about vacation in July instead.

I know that feeling, I don't like talking about my pain stuff a lot just because it makes me feel like I'm complaining / trying to get sympathy. While in reality I know that is not the case, I just can't help but feel that way. It's really this thought process that has been one of my biggest problems in seeking care, I need help but I don't want to talk about my problems to get it. At some point I just had to decide that if I wanted help I had to be willing to be honest with the doctors, after all they can't help me if I'm not. I feel like this somewhat applies to what you are going through.

I think the only attention you are drawing is from Aspergirl and I, you can make it so only we can see these entries (I know you know how to do this assuming you haven't done it already ), but if that's to much all together you can just make the whole thing private and disappear for a bit. I understand that feeling, I like having anonymity, having that ability to just disappear into the background.

I think there are just a lot of times when I want to say stuff and engage and respond but then can't deal with like... anything that comes after that. But that's kind of life- "suck it up buttercup" heh.

Dear SignOfLazarus,

I'm Michael Pratt. You helped me in a chat room yesterday. Thank you. I hope you will visit my blog, and write a book with me. Your mind fascinates me, and I think we can make a buck and help the world. We will need about twenty co-authors. Maybe you could ask your friends to be part of our team (in the event you accept this mission). It must sound impossible to write the definitive book about Aspergers, that's my intent, but when people tell the truth of their experience, and make understandings of that truth, and organize their understandings into chapters of a book, the difficult becomes pleasurable and profitable.

I've taught terrific students at great universities, and they work hard and they try hard to tell the truth, but no one tells the truth like Aspies, and no one works harder. An affliction? Maybe. Maybe not. I have seen the end from the beginning. We will do this, and we will change the world.

Respectfully,

Mike

Hi micheal!
Thanks for reading my posts. Have you heard the phrase "flattery will get you everywhere"? ;]

I would greatly encourage you to become a bit more active in the community, activiely engage with the members [in the community, not just blogs] and really get to know people individually before approaching them about a book.

Most would be very put off by a person who is, essentially, a stranger approaching them with such an idea. I am not really- but i am also not about to "jump on board".
Just give it a little bit of time.

Also, the advantage to you would be camaraderie and a bit more insight into what might fit into such a book and possible brainstorming with others.

Good idea to hear about. It's always encouraging to hear things like that developing.
Nice to see you.
Laz

Thank you Laz. I appreciated your response to me, but I don't understand why people would be put off when they're offered a job. Of course I'm a stranger. I'm a publisher. If you will go to Amazon.com and call up my latest book, How To Punish Your Child, you'll get a sense of the kind of books I publish. You can "read inside the book." Am I trying to use Aspies for my own purposes? Of course I am.

I don't think you read my blog. I think that if you did read the single post on my blog your natural and valid distrust of me would be diminished. But if you have read my blog, your response to me seems . . . I don't know. You're smart, and you may have discerned that I believe parents cause Aspergers. That idea may have offended you mightily, but I meant no offense. I didn't design reality. I just want to know what's going on down here. Parents, physicians, researchers, insurance companies, and scholars do not think parents cause much of anything in children. They think mental illnesses with unknown causes, maybe genetics, maybe environmental poisoning, cause Aspergers. They are incorrect.

I saw a documentary a month ago on the educational channel about the youngest person every diagnosed with schizophrenia. The parents couldn't see, the physicians couldn't see, the documentarians couldn't see, but you can see if you'll watch the documentary, this child was maddened by her parent's relentless desire to create a prodigy. We are in one of the strangest historical moments ever on this planet. New mental illnesses are invented each year to provide a diagnosis, and ideally a drug, for troubled children who perplex and embarrass their parents. Math disorder? My son and I invented a disorder that causes a child not to do what she doesn't want to do. We were satirizing the historical moment with hyperbole, but a week later we read about the disorder in a magazine.

If our book shows parents how to be better parents, think what we have given. I don't care about money from the book. I have money. You all can split the money as many ways as there are people who tell the truth of their experience and allow us to publish the truth. I offer you the position of editor of the book, your remuneration is a share of the book's income. You can even publish with a publishing house you create. I don't need anything, but I do want to give something. How about this working title, Causes of and Cures for: Aspergers Disorder. If you don't want the job, I'll go away, but I had a right to be here. To join I was asked about my Asperger's status, and I replied, "I don't know." Last week my son told me his wife thinks I'm obsessive. I've never known my loving and brilliant daughter by law to be wrong about anything. Mike

I don't need someone else to tell me I'm smart. I have smart.

Not that my view point relevant here, but I respectfully disagree with your stance on the source of autism Sir. My wife and I have autism, and my beautiful well mannered happy well loved daughter has ASD, so what would you imply that my wife or I have done to her to give her autism?

no, I would call you almost my "right hand man", A BROUHAHA . I often consult you on things- pretty evident if one looks at my blog as a whole. Also you would be one of the target authors and an active member of this community, so absolutely relevant.

Regardless- my blog so your voice is important to me, even on the occasions we do disagree. :]