Posted by yxibow on October 29, 2008, at 3:17:43
In reply to Re: Low white blood cell counts due to meds? » yxibow, posted by Phillipa on October 29, 2008, at 0:40:49
> Jay I'm so sorry you feel so lonely. And what a horrible disorder you have any closer to understanding it? I do feel for you. Love Phillipa
I appreciate that, Jan
No.. I had some good years with Seroquel not that I wanted to take it, but I felt "real" -- but there is a lot more to it than that, complex psychological issues....
....I was having trouble already with Seroquel which I believe would end with my non-tardive orobuccal tic [it is very psychologically connected to things], so gave the choice to switch to Zyprexa, which one month of going through stiffness caused a probable permanent stiffness (dystonia) from my trunk to my toes and my arms.
Anyhow, the dropping of Seroquel and Zyprexa was not a good match at the time that I had a volunteer and then my first real job in a long time -- which was probably very scary for me as noted and caused a dramatic plunge in depression last year.
Finally through various episodes we don't need to go into I went back on Seroquel and actually though I hate to say it, my "functionality" -- thats a very clinical term for, well, everyone, how they are able to cope and manage, life, which my moroseness and other things I also won't go into, show that I'm really afraid of living -- that is, being on my own.
I know I'm lucky to have parents who have some resources to be able to care for me, I always have had good relationships with them anyhow basically -- can't change reality, I wish they had me younger.
But that doesn't really answer your question -- cosmically, do I have any understanding why sometime between November 17 and 18, 2001, my Dopamine D2 (theory, nobody can exactly place that, its just response to drugs) went skyrocketing and my psychiatric vision (and hearing too) started getting stranger and amplified and/or distorted from what others could probably understand but would have filtered it out by the time I mentioned it...... I don't know, and no doctor knows.
So yes, I feel lonely. But I also know that there are only so much resources and also I need to go forward. But I've only accepted this on an abstract level. I haven't accepted where I am. I live in the past at times, I don't mean literally, but I wax back at moments that may have been good, also may be through rosy lenses.
Until I really accept where I am -- regardless of the fact that I am angry that Jay's reality (and don't get me wrong, my intelligence is in there, its trapped) but I mean how I see things, literally, and experience anxiety is not like everyone elses and their capabilities, I'm not moving forward.
It's not like anything I've experienced before -- Somatoform NOS, Psychosis NOS -- and thus some things I really don't know how to deal with and, well, there goes hiding under the covers at times.
And I'm also angry that medicine essentially betrayed me, but nobody could have seen really rare reactions to low potency antipsychotics coming -- still I have that anyhow.But then anger is one sign on the road to acceptance, something I just find so foreign.
And then there's the issue of getting off the Valium, which would improve my memory, probably, and was originally a destination for Clozaril (you can't have benzodiazepines on Clozaril, not Valium certainly), which never emerged, has actually proven a hard double edged sword, because it still provides some vestige of anxiolytic power even though I don't feel it.
That's causing problems now, maybe -- we don't know.
I mean some could say it could be worse, you could think about every other disorder in NORD (national organization of rare disorders) and there would be hundreds of "orphan disorders".
I still have the ability to walk, even if it hurts, especially at night. I used to be an avid mountain biker and hiker -- it doesn't mean I'll never be one but its a challenge.
I could go on -- the risk of diabetes with my weight, although my lipid panel recently was fine.
Basically since I'm not using the gym because I have such confusion distinguishing sounds and voices and that also is a part of my visual field now -- imagine being at a party and not separating things and having certain sounds tick you off -- no I'm not hearing voices, its just the gate in my mind that is supposed to be there to block these things like everyone else has is not quite functional.
.... I have to try to limit my intake (very hard) and I need to walk more.
So its not a question of being closer to understanding because unless someone in North America presents with the same list of medications and symptoms I'm not likely to find a cause other than perhaps my hyper-hysteria over 9/11 and the aftermath spilling into a disorder -- yet you'd think that would have dissipated...but being closer to accepting the present and fighting despite the dozens of things that are thrown my way.
Its tiring (bad insomnia too.... speaking of which I'm turning in) and that's just one reason why its hard to fight. I also could use social interaction which is another loop of how do I do that, etc.
Anyhow, that's a long enough laundry list.-- tidings
Jay
poster:yxibow
thread:859473
URL: http://www.dr-bob.org/babble/20081027/msgs/859689.html