Things are going well for me. So well it's scary to speak of it.
After messing up my Seroquel dose last week and not re-adjusting to it well I thought I would take a half-dose until the long weekend. I expected a week of struggles and not feeling well. Instead I've felt great and each day seem to have a bit more energy. I've had plenty of withdrawl like stuff, and I've working on balancing ativan back into my life so I can sleep. I've been off all anxiety meds for months, so this has been a bit challenging, but it's improving.
I did not do this alone. I keep my doctor updated whenever I change anything, and if it's one of my usual meds I can change she stays quiet. On this she did give an ok. Dr. Mind is to monitor, and at first he seemed wary today, then really glad to see what I'm like.
It's so hard to explain, this sudden difference. Certainly the sedation is lessening, but the personality blunting I've had for so long, years and years, is reduced. I'm finding absurd things funny again. I'm enjoying music. Life is much easier.
This may not last. It's a trial, not a sure thing. SAD time is approaching and that may effect things.
Then today I had something wonderful happen. I have used my insurance benefits for the year for counseling. I've always been on reduced rates, but they changed how they determine that and I no longer qualified. I submitted a verbal request, then a written one, for special circumstances explaining my massive medical bills. They let me go into the middle group, where I'm actually paying less than I have for a long time. I don't even have words to express thanks to them.
And, I'm sleepy so I think I have further proof things are working well.
One day at a time.
Thursday, August 28, 2008
Wednesday, August 27, 2008
Perspective
One of the benefits of being so open about my illness is that I get to see their reactions. I also get to see that people absolutely can't seem to reconcile that a medicated me is very different than a psychotic me. They don't think of me as like "psych patients". I, on the other hand, identify myself as "a psych patient".
I know there are some differences between me and average. However those differences go both ways: there are a number of ways I am much sicker than most people. And that is what people can't see.
Today I said something about "most psych patients smoke. I don't, but I have really wanted to when I was severely manic". My co-worker said "listen to you; you just throw yourself into "psych patients". You're funny".
I was actually confused for a moment until I realized she doesn't see why that's funny to me. It's true that I'm working and independent with most things and that you don't see bizarre behaviors the second you look at me. But I worked very hard to accept that I am a psych patient. I have my own set of behaviors and weirdnesses and mood swings and paranoias; I've had hallucinations and I have acted horribly in public. I have screamed at a psychiatrist and nearly been hospitalized against my will. Actually I've nearly been hospitalized against my will more than once. Yep, that's a psych patient.
For so long I refused to accept that I was who I am. I tried to use the things that keep me functioning better than many people with my degree of illness to separate me. "They" were patients with limitations; "I" could do anything I wanted and I was not limited. Except I was, I just hadn't gotten healthy enough to accept that.
I still remember the day I got it. I see Dr. Brain in a large clinic on a Saturday. She had no assigned desk or secretary. I started vomiting Thursday night. I tried to make it up on Saturday but I threw up all Friday and trying to get going on Saturday was making me sick yet again. I called and cancelled with a random person. I asked them to tell her I really needed her to call me. Rather than let her know I was vomiting they cancelled and said "call her". Dr. Brain had just moved to this practice and my routine had been disrupted. For years I'd seen her the same Saturday of the month at the same time. With this she adds me on to the end of her VNS clinic day because I generally need longer appointments and more consistency than she could give on a regular day. The thing was that I wasn't finding out until the day before appointments when they were, I was still quite unstable and so I'd get a bit freaked out. It's a huge hospital and her actual secretary doesn't set Saturday appointments. I didn't know who to talk to at the clinic, and if I did get someone it wasn't who I know now to talk to, so I'd be told she was booked until April of the next year, I had to call the scheduling desk, and no they wouldn't look because she would not be adding me to a list. Then I'd get upset and email her, and she was busy and would ignore me until the day before the appointment when someone would call.
So, anyway, that paragraph got ridiculous. But the point was, she felt I was being passive aggressive and didn't call. I was rapidly getting depressed. Finally Dr. Mind called to sort of mediate and get me a med increase. He told me later about her anger and then when I cried in frustration he asked why. I sobbed "Because she's treating me like some psych patient and I don't deserve that". He looked at me and very gently said "But Just Me, you ARE a psych patient. You maybe haven't upset her before, but the way the secretary presented the message would be a very typical frustrating behavior." I was positively shocked. But, he was correct and frankly I'm a better therapist when I remember I'm not that different than the most frustrating people.
I know there are some differences between me and average. However those differences go both ways: there are a number of ways I am much sicker than most people. And that is what people can't see.
Today I said something about "most psych patients smoke. I don't, but I have really wanted to when I was severely manic". My co-worker said "listen to you; you just throw yourself into "psych patients". You're funny".
I was actually confused for a moment until I realized she doesn't see why that's funny to me. It's true that I'm working and independent with most things and that you don't see bizarre behaviors the second you look at me. But I worked very hard to accept that I am a psych patient. I have my own set of behaviors and weirdnesses and mood swings and paranoias; I've had hallucinations and I have acted horribly in public. I have screamed at a psychiatrist and nearly been hospitalized against my will. Actually I've nearly been hospitalized against my will more than once. Yep, that's a psych patient.
For so long I refused to accept that I was who I am. I tried to use the things that keep me functioning better than many people with my degree of illness to separate me. "They" were patients with limitations; "I" could do anything I wanted and I was not limited. Except I was, I just hadn't gotten healthy enough to accept that.
I still remember the day I got it. I see Dr. Brain in a large clinic on a Saturday. She had no assigned desk or secretary. I started vomiting Thursday night. I tried to make it up on Saturday but I threw up all Friday and trying to get going on Saturday was making me sick yet again. I called and cancelled with a random person. I asked them to tell her I really needed her to call me. Rather than let her know I was vomiting they cancelled and said "call her". Dr. Brain had just moved to this practice and my routine had been disrupted. For years I'd seen her the same Saturday of the month at the same time. With this she adds me on to the end of her VNS clinic day because I generally need longer appointments and more consistency than she could give on a regular day. The thing was that I wasn't finding out until the day before appointments when they were, I was still quite unstable and so I'd get a bit freaked out. It's a huge hospital and her actual secretary doesn't set Saturday appointments. I didn't know who to talk to at the clinic, and if I did get someone it wasn't who I know now to talk to, so I'd be told she was booked until April of the next year, I had to call the scheduling desk, and no they wouldn't look because she would not be adding me to a list. Then I'd get upset and email her, and she was busy and would ignore me until the day before the appointment when someone would call.
So, anyway, that paragraph got ridiculous. But the point was, she felt I was being passive aggressive and didn't call. I was rapidly getting depressed. Finally Dr. Mind called to sort of mediate and get me a med increase. He told me later about her anger and then when I cried in frustration he asked why. I sobbed "Because she's treating me like some psych patient and I don't deserve that". He looked at me and very gently said "But Just Me, you ARE a psych patient. You maybe haven't upset her before, but the way the secretary presented the message would be a very typical frustrating behavior." I was positively shocked. But, he was correct and frankly I'm a better therapist when I remember I'm not that different than the most frustrating people.
Tuesday, August 26, 2008
Help?
Copied from an email I sent last night....See what you guys think.
This is strange. But it is making me REALLY paranoid. First, know that my work monitors me more than other people. For example, I got in serious trouble for including the word "grrr" when I was frustrated in a note one day. I had to listen to 2 long lectures about threatening language, what is inappropriate, etc. This was followed by being told if I feel suicidal or homicidal I am to tell a supervisor. I was furious at the time because I felt this was not applied fairly to everyone else, so I waited for the next meeting and gave my own little speech about bipolar not equating violence, that I am perfectly capable of handling myself, and that if I should happen to be suicidal I will not be working, and I do not become homicidal because that is RARE. I pointed out that not only do I monitor myself and take medication to control such things, I also am carefully professionally monitored by experts. Which my managers are not, given the stupid things that have come up. I told them at that time that it was unfair (word carefully avoided) to treat such a minor thing as a threat because of my illness. I was given a speech about that's not true, that it would be handled that way across the board. But that is NOT true; all the time people throw around the "I'm so mad I could KILL him" phrase and they aren't discipllined. I pay attention because it makes me so mad that I'm not even allowed to talk the same as other people. OK, so that's where some of my "being singled out" feelings started. But it has moved on to new levels. Manager one is actually my assistant, but she does coordination work. I very often leave her notes of various sorts. Things like "Edna is wandering into rooms where she may get clobbered. Would they consider moving her down with the ladies at the other end?", or last week I left a typed note about some patient issues that would help her treat this patient. Or "who is the payer for Sam?". I use very distinctive post-it notes so people can't steal them from me. Currently they are quotation marks. The other day I got in the closet in the office to get more eval forms and saw in her mailbox every note I had written the manager one last week. Every single note I write to the manager one that two can get her hands on she takes and keeps. Sometimes this happens before manager one even SEES the thing. She has some random file on me with all these notes. This means I can't be casual at all. Ever. Nor can I write down things I don't want her to have access to. I know she goes through my desk too, which is whatever, good luck finding anything juicy. But I feel like this is all being saved to be used against me even though it is totally harmless junk. However, take anything out of context and it potentially becomes bad. Again, see grrr above......
For now I just am trying to not leave notes. Much harder than it sounds.
But am I just being paranoid? Is this normal?
Please, be honest. Even if you think I should be watched more than the others, be honest.
This is strange. But it is making me REALLY paranoid. First, know that my work monitors me more than other people. For example, I got in serious trouble for including the word "grrr" when I was frustrated in a note one day. I had to listen to 2 long lectures about threatening language, what is inappropriate, etc. This was followed by being told if I feel suicidal or homicidal I am to tell a supervisor. I was furious at the time because I felt this was not applied fairly to everyone else, so I waited for the next meeting and gave my own little speech about bipolar not equating violence, that I am perfectly capable of handling myself, and that if I should happen to be suicidal I will not be working, and I do not become homicidal because that is RARE. I pointed out that not only do I monitor myself and take medication to control such things, I also am carefully professionally monitored by experts. Which my managers are not, given the stupid things that have come up. I told them at that time that it was unfair (word carefully avoided) to treat such a minor thing as a threat because of my illness. I was given a speech about that's not true, that it would be handled that way across the board. But that is NOT true; all the time people throw around the "I'm so mad I could KILL him" phrase and they aren't discipllined. I pay attention because it makes me so mad that I'm not even allowed to talk the same as other people. OK, so that's where some of my "being singled out" feelings started. But it has moved on to new levels. Manager one is actually my assistant, but she does coordination work. I very often leave her notes of various sorts. Things like "Edna is wandering into rooms where she may get clobbered. Would they consider moving her down with the ladies at the other end?", or last week I left a typed note about some patient issues that would help her treat this patient. Or "who is the payer for Sam?". I use very distinctive post-it notes so people can't steal them from me. Currently they are quotation marks. The other day I got in the closet in the office to get more eval forms and saw in her mailbox every note I had written the manager one last week. Every single note I write to the manager one that two can get her hands on she takes and keeps. Sometimes this happens before manager one even SEES the thing. She has some random file on me with all these notes. This means I can't be casual at all. Ever. Nor can I write down things I don't want her to have access to. I know she goes through my desk too, which is whatever, good luck finding anything juicy. But I feel like this is all being saved to be used against me even though it is totally harmless junk. However, take anything out of context and it potentially becomes bad. Again, see grrr above......
For now I just am trying to not leave notes. Much harder than it sounds.
But am I just being paranoid? Is this normal?
Please, be honest. Even if you think I should be watched more than the others, be honest.
Sunday, August 24, 2008
Funny enough
See below for a "real" post....
I just was reading through old emails from 2006. I was looking at some of the patterns in things I've dealt with at work over the last few years.
At that time I was looking for a new job. It turned out to be the one that I left last February. But I didn't remember that I also looked into the same job that I wound up taking later, my current job. I chose not to take it because of the distance to my therapist. That's a little strange since it wouldn't have been any different than what I was doing back then, but for whatever reason I didn't try.
Strange though.
I just was reading through old emails from 2006. I was looking at some of the patterns in things I've dealt with at work over the last few years.
At that time I was looking for a new job. It turned out to be the one that I left last February. But I didn't remember that I also looked into the same job that I wound up taking later, my current job. I chose not to take it because of the distance to my therapist. That's a little strange since it wouldn't have been any different than what I was doing back then, but for whatever reason I didn't try.
Strange though.
What I Do
BipolarLawyerCook has a peice up at RealMental that has made me think a lot.
She writes of the difficulty in knowing where you are when you are bipolar. As you live this disorder you are constantly reaching for the level ground you are told you can achieve, but much of the time this feels far off. For me it took 6 years and 30 some medications, plus well over 300 therapy visits to finally understand that level ground does exist. Since that time I had one 2 month period of not being totally well, this current off spell I'm still hoping is med related (I cut my dose in half for a while. Probably this will be a mistake, but we'll see. I'm planning to try to make it until this weekend, then increase as needed. Unless my doctor has something different to say. Usually she lets me do this kind of thing myself though.
Anyway, for me one of the hardest parts is recognizing where I am if I'm not ok and I'm not at rock bottom. Sometimes even rock bottom isn't clear to me; 2 1/2 years ago I kept working even though I was so lithium toxic I was vomiting daily, and I was so manic I was barely functioning, and I thought I was doing great. I was actually on disability for 2 weeks before I realized how badly out of control I was.
During that episode my therapist found a way for me to look at where I am and parameters that go with each level. It makes it easier both for me to understand and communicate what is going on. Even now it is used in conversation when I start to feel off-kilter.
So, made a bit simpler (mainly because I don't feel like going and dragging the full-size poster Dr. Mind made me out of it's hiding place), I use the official road sign monitoring system. Step one is mile markers, meaning I need to notice what I am doing. I cannot put in 12 hour days every day for 3 weeks or I will get sick. If I ignore this I'll overshoot the exit and wind up somewhere I don't want to be. Next, I believe, is a yield sign. Sometimes I need to not do something so I can rest. Next is a blinking stop. That's last week: I must rest, then I can move on. Obviously it's not good to get that far. The more drastic is the full-blown stop. That's time off work, generally increased meds, and bedrest is generally required. The last sign is hospital, added by me mainly because I was still bitter about nearly being placed there earlier in the summer and I was trying to point out I was able to be out just like I'd said. Somehow I have a feeling it was a weak argument, but I needed it regardless. Plus I need to recognize that this may be part of it, and by that point I think I had promised to not fight so hard the next time. Which I didn't, and the next time I actually didn't need the hospital considered very much.
Anyway, this does work well for me. I figured I'd share because this kind of tip seems to help me when I can find it at the right moment.
She writes of the difficulty in knowing where you are when you are bipolar. As you live this disorder you are constantly reaching for the level ground you are told you can achieve, but much of the time this feels far off. For me it took 6 years and 30 some medications, plus well over 300 therapy visits to finally understand that level ground does exist. Since that time I had one 2 month period of not being totally well, this current off spell I'm still hoping is med related (I cut my dose in half for a while. Probably this will be a mistake, but we'll see. I'm planning to try to make it until this weekend, then increase as needed. Unless my doctor has something different to say. Usually she lets me do this kind of thing myself though.
Anyway, for me one of the hardest parts is recognizing where I am if I'm not ok and I'm not at rock bottom. Sometimes even rock bottom isn't clear to me; 2 1/2 years ago I kept working even though I was so lithium toxic I was vomiting daily, and I was so manic I was barely functioning, and I thought I was doing great. I was actually on disability for 2 weeks before I realized how badly out of control I was.
During that episode my therapist found a way for me to look at where I am and parameters that go with each level. It makes it easier both for me to understand and communicate what is going on. Even now it is used in conversation when I start to feel off-kilter.
So, made a bit simpler (mainly because I don't feel like going and dragging the full-size poster Dr. Mind made me out of it's hiding place), I use the official road sign monitoring system. Step one is mile markers, meaning I need to notice what I am doing. I cannot put in 12 hour days every day for 3 weeks or I will get sick. If I ignore this I'll overshoot the exit and wind up somewhere I don't want to be. Next, I believe, is a yield sign. Sometimes I need to not do something so I can rest. Next is a blinking stop. That's last week: I must rest, then I can move on. Obviously it's not good to get that far. The more drastic is the full-blown stop. That's time off work, generally increased meds, and bedrest is generally required. The last sign is hospital, added by me mainly because I was still bitter about nearly being placed there earlier in the summer and I was trying to point out I was able to be out just like I'd said. Somehow I have a feeling it was a weak argument, but I needed it regardless. Plus I need to recognize that this may be part of it, and by that point I think I had promised to not fight so hard the next time. Which I didn't, and the next time I actually didn't need the hospital considered very much.
Anyway, this does work well for me. I figured I'd share because this kind of tip seems to help me when I can find it at the right moment.
Friday, August 22, 2008
Ick
I am developing a really nasty anxiety cycle. My med change should have been easy. Instead I took too much for 2 days, and then I think increased too quickly without letting it have enough time to get out of my blood. Plus it's been hot. And I've been feeling anxious anyway because it's impossible to not freak out that this is the same time I got so sick last year and I'm not feeling perfect and it could happen again, etc. Even though I know I'm ok, it's hard to not think about it. A year ago yesterday the "I'm questioning how I feel" posts started, and on Sept. 17 I started disability.
I stayed home again today. I'll go in to work on Saturday and make it up, but I'm exhausted. I just couldn't get awake until about 4. This stinks because I'll not work a full day. I need the money. It also stinks because I just want rest. I think I need to put in for a 4 day weekend in the next few weeks.
Yesterday I found out that I no longer qualify for the reduced fee program at my counseling center and that my insurance is up for this year. I am requesting them to consider my special circumstances (ongoing severe illness and need for services longterm; demonstrated dedication to going there for care; 6+ years of going there weekly to bi-weekly; exceptional medical expenses thanks to severity of illness; financial hardship due to being on disability 1/3 of the last 2 years; etc.). That is also stressing me out.
I just wish I could make this med change magically be done. I can't believe I used to do a med change essentially every month.
Like Dr. Mind says, this is a set-back, not a place to panic. But it feels wrong and wrong equates scary to me.
I stayed home again today. I'll go in to work on Saturday and make it up, but I'm exhausted. I just couldn't get awake until about 4. This stinks because I'll not work a full day. I need the money. It also stinks because I just want rest. I think I need to put in for a 4 day weekend in the next few weeks.
Yesterday I found out that I no longer qualify for the reduced fee program at my counseling center and that my insurance is up for this year. I am requesting them to consider my special circumstances (ongoing severe illness and need for services longterm; demonstrated dedication to going there for care; 6+ years of going there weekly to bi-weekly; exceptional medical expenses thanks to severity of illness; financial hardship due to being on disability 1/3 of the last 2 years; etc.). That is also stressing me out.
I just wish I could make this med change magically be done. I can't believe I used to do a med change essentially every month.
Like Dr. Mind says, this is a set-back, not a place to panic. But it feels wrong and wrong equates scary to me.
Thursday, August 21, 2008
Flat
Today was my psychologist appointment. I thought about cancelling because of how tired I am, but I don't like to do that because they go out of their way to accomodate me and I don't want to mess that up.
Dr. Mind, predictably, pulled out his typical stern voice that is usually associated with my messing up something important. But I think he realized quickly how aware I already was of how bad this mess-up could have been. It stinks because it was another week "off" from the topic at hand, and if I weren't dealing with this tricky stuff I could easily be going 2 times/month.
He did verify what I've been feeling all along, that I'm not even changing my tone of voice much. I am just as drugged as expected. I FINALLY do feel a bit better this evening after a 5 hour nap.
I also counted the pills and I seem to have taken 2 days worth of too much. No wonder I've felt bad.
Hopefully this weekend things will come together.
Dr. Mind, predictably, pulled out his typical stern voice that is usually associated with my messing up something important. But I think he realized quickly how aware I already was of how bad this mess-up could have been. It stinks because it was another week "off" from the topic at hand, and if I weren't dealing with this tricky stuff I could easily be going 2 times/month.
He did verify what I've been feeling all along, that I'm not even changing my tone of voice much. I am just as drugged as expected. I FINALLY do feel a bit better this evening after a 5 hour nap.
I also counted the pills and I seem to have taken 2 days worth of too much. No wonder I've felt bad.
Hopefully this weekend things will come together.
Wednesday, August 20, 2008
This week is getting really long
I am sooooooooooo tired from my med mistake. Plus, after a month of not being busy, suddenly we are. I did 8 evals in the last 2 days. That's a lot. Especially since it could have been 10.
I'm tired enough I smashed my finger in a wheelchair legrest today. It's swollen and bruised and I had to finally wrap it because bending it too much hurts. It is truly lovely, esp. now that the wrap is my own and is white so that is glaringly obvious against my birthmark which covers much of my hand.
So, the new layout is hanging for now. Just too tired. Maybe this weekend.
I'm tired enough I smashed my finger in a wheelchair legrest today. It's swollen and bruised and I had to finally wrap it because bending it too much hurts. It is truly lovely, esp. now that the wrap is my own and is white so that is glaringly obvious against my birthmark which covers much of my hand.
So, the new layout is hanging for now. Just too tired. Maybe this weekend.
Monday, August 18, 2008
New Layout-Again
The last layout was fine, except the lettering was driving me nuts. And so I've gone on an exhaustive hunt for one I liked better. I like this one quite a bit but will be completing work on it over several days. So if you aren't linked and should be/want to be let me know. For some reason only some of my links "stuck".
When I make a mistake I do it right
Saturday I switched to extended release Seroquel. This is newly released and I'd read that it might decrease daytime drowsiness in people on high dose Seroquel, which is definetely me.
The trick was that on regular release I took 3 pills and on this formula I only need 2. My doctor reminded me several times to be careful of that. So what did I do? Took 3 pills. I know I did last night and i think I did the night before too.
Turns out that if you take more than is even approved you'll be EXTREMELY sleepy. I've been awake about an hour since 11 pm last night.
I'm fine, I just don't have the ability to stay awake. Needless to say today was a sick day.
Good times....
The trick was that on regular release I took 3 pills and on this formula I only need 2. My doctor reminded me several times to be careful of that. So what did I do? Took 3 pills. I know I did last night and i think I did the night before too.
Turns out that if you take more than is even approved you'll be EXTREMELY sleepy. I've been awake about an hour since 11 pm last night.
I'm fine, I just don't have the ability to stay awake. Needless to say today was a sick day.
Good times....
Friday, August 15, 2008
Please pray for this family
One of the friendships I have made through blogging was with a man named Jon, whose blog is www.livingbipolar.blogspot.com . Jon and I connected some time ago, when I was on disability (don't know which time) and I really enjoyed our discussions. Eventually I was working and transitioning to this new job and not reading as much, and at the same time Jon first became ill and was unable to blog for some time and then decided to give up blogging for the time being.
Jon not only lives with bipolar, he is a parent to a young adult son with bipolar, Kyle. Kyle briefly wrote his own story, but never got beyond the beginning. It is still available at www.manicrepressive.com . It was very obvious that he was a special person from his mere two posts.
Kyle died yesterday. I don't know the circumstances, other than it was an accident at home.
My heart is breaking for this family. Having an awful illness yourself is plenty; having your child also suffer from it is much worse. Losing that child is far beyond worse.
Please keep them in your thoughts and prayers. When I got an email with the subject "Kyle" I somehow automatically assumed it was good news. This is instead the worst news possible.
I don't know what to say.
Jon not only lives with bipolar, he is a parent to a young adult son with bipolar, Kyle. Kyle briefly wrote his own story, but never got beyond the beginning. It is still available at www.manicrepressive.com . It was very obvious that he was a special person from his mere two posts.
Kyle died yesterday. I don't know the circumstances, other than it was an accident at home.
My heart is breaking for this family. Having an awful illness yourself is plenty; having your child also suffer from it is much worse. Losing that child is far beyond worse.
Please keep them in your thoughts and prayers. When I got an email with the subject "Kyle" I somehow automatically assumed it was good news. This is instead the worst news possible.
I don't know what to say.
Thursday, August 14, 2008
More serious than lice
I am happy to announce that I will not force you all to remain totally immersed in lice, like me.
There's another important disability issue hitting the web. As you probably know (I know and I don't watch TV or check previews), there's a movie called Tropic Thunder that will be released this weekend. It apparently has a strong use of words not appropriate for use related to people with cognitive disabilities and lots of "retarded" jokes.
The disability community (and it's so good there truly is one; I need to become more involved), is responding. A business card with a response to the anticipated increase in these inappropriate jokes and words has been developed, and thanks to donations is being made available free to individuals via http://www.activegraymatter.org/ . I will be receiving 20 soon and plan to make full use of them.
The cards read as follows (or as above, depending on how blogger follows this command from me; it's usually cantankerous):
I personally work in a place where despite caring for people with many issues, staff throw painful words around often. With the therapists I usually will throw in a comment about disability immediately if I can to remind them this is ME, but most co-workers don't know and I hate hearing words like "psycho" and "psychotic" (out of context). Unless you have been these things you don't know. I've worked in psych and I've laughed about a lot of things, but there is a line.
So, get the cards, go to the site and get the program so you can print your own, or use your own words. Try though, to use this as a chance to take back what should be disabled inviduals rights to not be called callous names.
There's another important disability issue hitting the web. As you probably know (I know and I don't watch TV or check previews), there's a movie called Tropic Thunder that will be released this weekend. It apparently has a strong use of words not appropriate for use related to people with cognitive disabilities and lots of "retarded" jokes.
The disability community (and it's so good there truly is one; I need to become more involved), is responding. A business card with a response to the anticipated increase in these inappropriate jokes and words has been developed, and thanks to donations is being made available free to individuals via http://www.activegraymatter.org/ . I will be receiving 20 soon and plan to make full use of them.
The cards read as follows (or as above, depending on how blogger follows this command from me; it's usually cantankerous):
I personally work in a place where despite caring for people with many issues, staff throw painful words around often. With the therapists I usually will throw in a comment about disability immediately if I can to remind them this is ME, but most co-workers don't know and I hate hearing words like "psycho" and "psychotic" (out of context). Unless you have been these things you don't know. I've worked in psych and I've laughed about a lot of things, but there is a line.
So, get the cards, go to the site and get the program so you can print your own, or use your own words. Try though, to use this as a chance to take back what should be disabled inviduals rights to not be called callous names.
Infested
I'm sitting outside on my mother's deck letting lice treatment soak into my head. I probably don'[t have it, but I sure as heck was exposed. I even climbed onto the woman's bed to help hold her up.....
Sometimes healthcare stinks. Literally.
Sometimes healthcare stinks. Literally.
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Tuesday, August 12, 2008
Why you should make your wishes known, no matter your age
My grandmother is dying. She is several thousand miles away, in a state at least a thousand, probably more, miles further west than I have ever been.
I have never met her. When I was younger I looked very much like her wedding photo. She was thin and fair. Now she is very overweight and not very pretty in photos. Somehow my meds tranformed me; my resemblance now is much closer to my paternal grandmother, who was just as heavy. The odd thing is that I look like a small person carrying a lot of extra weight, while my paternal grandma looked just right while heavy, but I look like her somehow.
I didn't just inherit my looks from her, or part of them. Soon after my mother had seen me really sick she started to understand parts of her own childhood. My father is/was undoubtedly bipolar too, but the genetics are on both sides. I suspect there was little chance that at least one of my parents' children would be bipolar. My sister seems to suspect this too, carefully refusing anti-depressants and other risk factors.
At some point after my mother was married my grandmother simply walked out of her own life. She left her trailer door hanging open and never returned. She still had 2 minor children.
Over the years there were a few times someone parked near the house where I grew up and watched, then drove off quickly. We had occasionally weird calls with nobody there (this was pre-computer calling; in fact this was with rotary dial phones).
When I was about 20 my mom got a call from another relative to warn her that her mother was wanting to contact her. Since then my mother has spoken to her from time to time, mainly out of guilt. Nobody else agreed to any relationship with her. I used to think that would have an appeal, but as it turned out, it did not. She never cared to meet us, or acknowledge us, and she got her life back together many years before she called. It was pretty clear she was calling because she wanted someone to be there in her old age, and it wasn't like she approached this apologetically or anything. I spoke to her once, many years ago, because I answered the phone and it was her. It was the oddest feeling ever.
Anyway, the last week or so has contained a lot of phone calls regarding this, and well, you don't do what I do without knowing what the last week or two of kidney failure looks like.
My mother had to tell them today that if she codes that my mother can't sign a DNR due to not knowing her wishes. Which means that at some point she's likely to get a call where she has to say that and what it translates to is that her mother will receive CPR, which is ridiculous at this stage of illness, but she has nothing in place to say not to do it, and CPR, while it can be good, will not be for her. There will be broken bones and it will not work, and if it does she'll have brain damage from oxygen deprivation because she's not maintaining that well anyway, because of the dying. Which means if she survives code one, she will code again. I am praying the doctors realize the situation and don't aggressively do this. Just the appearance of CPR, perhaps.
Odd. I emailed a friend to ask for prayers for a patient of mine facing something scary tomorrow. I did not even think to ask for prayers for her. It's strange, I find that I have anger in here regarding this, and it's basically anger that she gave me this disease (ok, genetics did, but she could have been an example of a positive rather than a negative) and never even faced me or any of her own grandchildren.
My poor mother. I had a horrid childhood, and I have no clue what happens when my own father dies as none of us has seen him in over 10 years, but my mother's parents both just went on with their lives and didn't really bother about their children. When my grandfather died I was at the end of my clinicals in Michigan and it was the dead of a really bad winter and it's hard to make a fast trip from Michigan in a really bad winter. But his funeral also wasn't something I felt bad for missing as I didn't know him either, just really one visit per year at Christmas. Yet he lived 3/4 mile from my "good" grandma who spent time nearly every day until she died a few weeks before I graduated high school.
This is a lot of thinking. I always think it's sad when patients are doing this dying thing alone; it's so hard to remember sometimes it's got complex reasons behind it.
I have never met her. When I was younger I looked very much like her wedding photo. She was thin and fair. Now she is very overweight and not very pretty in photos. Somehow my meds tranformed me; my resemblance now is much closer to my paternal grandmother, who was just as heavy. The odd thing is that I look like a small person carrying a lot of extra weight, while my paternal grandma looked just right while heavy, but I look like her somehow.
I didn't just inherit my looks from her, or part of them. Soon after my mother had seen me really sick she started to understand parts of her own childhood. My father is/was undoubtedly bipolar too, but the genetics are on both sides. I suspect there was little chance that at least one of my parents' children would be bipolar. My sister seems to suspect this too, carefully refusing anti-depressants and other risk factors.
At some point after my mother was married my grandmother simply walked out of her own life. She left her trailer door hanging open and never returned. She still had 2 minor children.
Over the years there were a few times someone parked near the house where I grew up and watched, then drove off quickly. We had occasionally weird calls with nobody there (this was pre-computer calling; in fact this was with rotary dial phones).
When I was about 20 my mom got a call from another relative to warn her that her mother was wanting to contact her. Since then my mother has spoken to her from time to time, mainly out of guilt. Nobody else agreed to any relationship with her. I used to think that would have an appeal, but as it turned out, it did not. She never cared to meet us, or acknowledge us, and she got her life back together many years before she called. It was pretty clear she was calling because she wanted someone to be there in her old age, and it wasn't like she approached this apologetically or anything. I spoke to her once, many years ago, because I answered the phone and it was her. It was the oddest feeling ever.
Anyway, the last week or so has contained a lot of phone calls regarding this, and well, you don't do what I do without knowing what the last week or two of kidney failure looks like.
My mother had to tell them today that if she codes that my mother can't sign a DNR due to not knowing her wishes. Which means that at some point she's likely to get a call where she has to say that and what it translates to is that her mother will receive CPR, which is ridiculous at this stage of illness, but she has nothing in place to say not to do it, and CPR, while it can be good, will not be for her. There will be broken bones and it will not work, and if it does she'll have brain damage from oxygen deprivation because she's not maintaining that well anyway, because of the dying. Which means if she survives code one, she will code again. I am praying the doctors realize the situation and don't aggressively do this. Just the appearance of CPR, perhaps.
Odd. I emailed a friend to ask for prayers for a patient of mine facing something scary tomorrow. I did not even think to ask for prayers for her. It's strange, I find that I have anger in here regarding this, and it's basically anger that she gave me this disease (ok, genetics did, but she could have been an example of a positive rather than a negative) and never even faced me or any of her own grandchildren.
My poor mother. I had a horrid childhood, and I have no clue what happens when my own father dies as none of us has seen him in over 10 years, but my mother's parents both just went on with their lives and didn't really bother about their children. When my grandfather died I was at the end of my clinicals in Michigan and it was the dead of a really bad winter and it's hard to make a fast trip from Michigan in a really bad winter. But his funeral also wasn't something I felt bad for missing as I didn't know him either, just really one visit per year at Christmas. Yet he lived 3/4 mile from my "good" grandma who spent time nearly every day until she died a few weeks before I graduated high school.
This is a lot of thinking. I always think it's sad when patients are doing this dying thing alone; it's so hard to remember sometimes it's got complex reasons behind it.
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Sunday, August 10, 2008
Going too far
First, please give me feedback about the new look. I really like everything but the blurred title, which disturbs me. But typically I'm way more sensitive to that than most people. If it bugs you, please speak up. You won't offend me. I try to select themes that are friendly to bipolars with sensory defensiveness.
Today I encountered a weird thing. We were at Chipolte and I made some joke about my multiple illnesses. I did not say what I was referring to. My mother kept shushing me, like it's rude to say you have something wrong in public. I then was (quietly) quite offended as that is my call. If I want to wear clothes with I AM BIPOLAR printed all over, that's my call.
On the plus side I got to go to an outdoor arts and crafts fair and walk all over it, then went shopping for several hours. That's huge in my life.
Today I encountered a weird thing. We were at Chipolte and I made some joke about my multiple illnesses. I did not say what I was referring to. My mother kept shushing me, like it's rude to say you have something wrong in public. I then was (quietly) quite offended as that is my call. If I want to wear clothes with I AM BIPOLAR printed all over, that's my call.
On the plus side I got to go to an outdoor arts and crafts fair and walk all over it, then went shopping for several hours. That's huge in my life.
Saturday, August 09, 2008
Under Construction
I am just doing a new template. My last one somehow was messed up pretty badly. I'll report back when I have a new one set up.
If you want a link please let me know; they were horribly out of date anyway.
JM
If you want a link please let me know; they were horribly out of date anyway.
JM
Please help me
Is my blog background showing up on your computers? I no longer see my template, just yellow and very difficult to read white lettering. My photo is also a goner. I have no idea if this is my computer or blogger, or if I screwed something up.
Please let me know if 1)you see the entire thing, butterflies and jellyfish and all (or you may see a new picture of me I just added and 2)if not, how do I fix this?
Thank you
Please let me know if 1)you see the entire thing, butterflies and jellyfish and all (or you may see a new picture of me I just added and 2)if not, how do I fix this?
Thank you
Thursday, August 07, 2008
So silly
Today was a wee bit stressful, and now I'm having trouble sleeping. So I've been catching up on a few of the blogs I check on about a weekly basis rather than daily.
I've been blogging for quite some time now; over 2 1/2 years and almost 600 posts. During that time I've made friends who I've had a good bit of interaction with via comments (Sarah was the first of these, one of the earliest commenters on my blog not from my personal friends), and there have been times people have mentioned my blog or something I've said. I started a pouring of posts about whether bipolar patients were evil when I kept getting hits about that). I've had a psychiatrist feature some writing about med compliance on his blog. And various other people have mentioned me.
I'm apparently much more of an attention hound that I think. I totally avoided being in a commercial today for my work, but I love mention. And tonight I felt even more special because it was someone I read out of interest, not a shared mental health thing. I'd made a suggestion to improve something and she mentioned it, unattributed, as a helpful idea.
So now I feel all bloggilly famous, in a totally understated way.
I've been blogging for quite some time now; over 2 1/2 years and almost 600 posts. During that time I've made friends who I've had a good bit of interaction with via comments (Sarah was the first of these, one of the earliest commenters on my blog not from my personal friends), and there have been times people have mentioned my blog or something I've said. I started a pouring of posts about whether bipolar patients were evil when I kept getting hits about that). I've had a psychiatrist feature some writing about med compliance on his blog. And various other people have mentioned me.
I'm apparently much more of an attention hound that I think. I totally avoided being in a commercial today for my work, but I love mention. And tonight I felt even more special because it was someone I read out of interest, not a shared mental health thing. I'd made a suggestion to improve something and she mentioned it, unattributed, as a helpful idea.
So now I feel all bloggilly famous, in a totally understated way.
Monday, August 04, 2008
Moving on
It seems like I just finished one hard lesson in therapy, and now we've started another. This is probably the scariest thing I can think of taking on, but I have to before anything else in the logical next goals list can happen.
One of the things I struggle most with is trust. I have the double whammy of growing up in a really abusive family combined with an illness creating paranoia. And all my relationships are impaired by my lack of trust. And then I'm embarrassed by this, and so I don't even try. The only people I am truly friends with are people who hang in there through my repeated need to make sure things are ok. If you're my friend and I don't hear from you in a long time, either I'll ask if it's ok (meaning you are deeply trusted), or I'll assume you hate me and wait for you to contact me, letting the whole thing go.
Often trust is so difficult that it goes to basic levels for me. I don't even really like to be 1:1 in a room in many situations. Certain ones I'm ok, I'm ok with Dr. Mind, Dr. Brain, and Dr. Body, all 1:1, but I am not ok with Dr. Kidney alone. And even with those I am ok with, I struggle sometimes. Dr. Mind would not ever touch me, and that's partly because he knows it would upset me, but also because he's carefully professional. Strangely I touch my patients all the time and am a firm believer in the healing power of touch. Even if I had a patient I could treat without touching them, which does happen sometimes, I make sure I touch them at least once. I touch family member's arms without thinking. But the difference there is I am in control.
I've got to learn this. But it's scary. I am going to have to go where I've not cared to go before and I could live without that. When the therapist I saw the first 3 1/2 years I went to the counseling practice I use left, the point of choosing Dr. Mind was partially that because he is a man he is a place for me to practice greater trust. And we've come a long, long way. Early this year he kind of proclaimed that I was ready to go further than ever before if I could trust him. We worked on it and I've made incredible gains. But now we're back to the basics.
Today we talked about his definition of trust. Then I had to point out that I don't think I'm there yet. And my definition only proves that I am severe need of growth in this area. But it is so scary....
I also may have to talk to him about abuse. I haven't done that so much. But this is a whole new level of thinking and anticipating it is already triggering nightmares.
I know momentum is good. I also know I could say I need a few easy weeks. But then I'd just dread that this has to come. I've not been happily anticipating it for the weeks I've known it was coming. But there just has been so much this year.
I just have to keep remembering that it's good and that October and cooler temps are coming....
One of the things I struggle most with is trust. I have the double whammy of growing up in a really abusive family combined with an illness creating paranoia. And all my relationships are impaired by my lack of trust. And then I'm embarrassed by this, and so I don't even try. The only people I am truly friends with are people who hang in there through my repeated need to make sure things are ok. If you're my friend and I don't hear from you in a long time, either I'll ask if it's ok (meaning you are deeply trusted), or I'll assume you hate me and wait for you to contact me, letting the whole thing go.
Often trust is so difficult that it goes to basic levels for me. I don't even really like to be 1:1 in a room in many situations. Certain ones I'm ok, I'm ok with Dr. Mind, Dr. Brain, and Dr. Body, all 1:1, but I am not ok with Dr. Kidney alone. And even with those I am ok with, I struggle sometimes. Dr. Mind would not ever touch me, and that's partly because he knows it would upset me, but also because he's carefully professional. Strangely I touch my patients all the time and am a firm believer in the healing power of touch. Even if I had a patient I could treat without touching them, which does happen sometimes, I make sure I touch them at least once. I touch family member's arms without thinking. But the difference there is I am in control.
I've got to learn this. But it's scary. I am going to have to go where I've not cared to go before and I could live without that. When the therapist I saw the first 3 1/2 years I went to the counseling practice I use left, the point of choosing Dr. Mind was partially that because he is a man he is a place for me to practice greater trust. And we've come a long, long way. Early this year he kind of proclaimed that I was ready to go further than ever before if I could trust him. We worked on it and I've made incredible gains. But now we're back to the basics.
Today we talked about his definition of trust. Then I had to point out that I don't think I'm there yet. And my definition only proves that I am severe need of growth in this area. But it is so scary....
I also may have to talk to him about abuse. I haven't done that so much. But this is a whole new level of thinking and anticipating it is already triggering nightmares.
I know momentum is good. I also know I could say I need a few easy weeks. But then I'd just dread that this has to come. I've not been happily anticipating it for the weeks I've known it was coming. But there just has been so much this year.
I just have to keep remembering that it's good and that October and cooler temps are coming....
Saturday, August 02, 2008
I'm everywhere you go
I'm getting a number of hits because I made a comment on another blog where people, often medical professionals, were stating that something done to help protect privacy is to protect professional from "pscyhotic" people.
In my own opinion I shouldn't have commented. I even wrote to the author to apologize, although nobody has actually responded, and what I said was appropriate. I just believe that it is much better for me to post over here than to participate in what tends to become useless arguing.
But, this is MY place and I get to say what I feel here. So, here's the thing: when people assume that psychotic people are not in their daily lives, that's a fairly grave error. True, it's been a long time since I was truly having psychotic symptoms (November). But for the 6 years prior to that it was frequent. And the only reason now is that I'm on a high-dose of anti-psychotic medication (Seroquel). Plus I'm on 2 mood stabilizers. In other words, I'm doing great but I'm a house of cards that could tumble easily. I don't foresee it soon, but last year's big episode I didn't really see until the beginning was well upon me. In fact, I'm terrified right now because last year I got sick partly because I was so hot and not drinking enough at work and I got run down and kept pushing myself and soon enough I was manic. There's a major difference, I have not had caffeine since the day I realized I was manic last year and I was causing the mania through caffeine consumption, to some extent. And I'm being cautious. And I'm on Seroquel which has been my miracle drug.
Back to the point though: people seem to have this idea that they can intuit mentally ill people, or that we wear a uniform or something. We do not. We can be just as well-educated as anyone else, we can do any job out there, and we can fit in.
I am so tired of being lumped into some "psychotic" category for the world's disposal of me. Psychotic is something I am sometimes, but I am so many other things. And frankly if you're willing to be a medical professional and make statements putting down people with an illness, I'm a lot happier that I live with psychosis than I would be to be you.
It's time people recognize that mental illness spans a range of things. Some people are totally overwhelmed and rely on social systems for assistance. Some fall through the cracks. And others operate on a scale of as much variation in function as most humans.
Personally, what I know about my own illness is that I have the symptoms to make me way sicker and more limited than I am. But for whatever reason, despite having some serious times I've not worked, I've managed to get the education to do what I do and then to have a reasonably successful career. I wouldn't have chosen this if I knew what my future held, but I did and I live the life I anticipated. Sort of.
My major point is that I am there. All the time. You might notice things that are "strange" about me, and in my case I talk about taking meds because it helps explain some things, and you'd surely note my pupils are huge, but basically I'm totally invisible.
And for the record, I have never threatened or harassed anyone.
In my own opinion I shouldn't have commented. I even wrote to the author to apologize, although nobody has actually responded, and what I said was appropriate. I just believe that it is much better for me to post over here than to participate in what tends to become useless arguing.
But, this is MY place and I get to say what I feel here. So, here's the thing: when people assume that psychotic people are not in their daily lives, that's a fairly grave error. True, it's been a long time since I was truly having psychotic symptoms (November). But for the 6 years prior to that it was frequent. And the only reason now is that I'm on a high-dose of anti-psychotic medication (Seroquel). Plus I'm on 2 mood stabilizers. In other words, I'm doing great but I'm a house of cards that could tumble easily. I don't foresee it soon, but last year's big episode I didn't really see until the beginning was well upon me. In fact, I'm terrified right now because last year I got sick partly because I was so hot and not drinking enough at work and I got run down and kept pushing myself and soon enough I was manic. There's a major difference, I have not had caffeine since the day I realized I was manic last year and I was causing the mania through caffeine consumption, to some extent. And I'm being cautious. And I'm on Seroquel which has been my miracle drug.
Back to the point though: people seem to have this idea that they can intuit mentally ill people, or that we wear a uniform or something. We do not. We can be just as well-educated as anyone else, we can do any job out there, and we can fit in.
I am so tired of being lumped into some "psychotic" category for the world's disposal of me. Psychotic is something I am sometimes, but I am so many other things. And frankly if you're willing to be a medical professional and make statements putting down people with an illness, I'm a lot happier that I live with psychosis than I would be to be you.
It's time people recognize that mental illness spans a range of things. Some people are totally overwhelmed and rely on social systems for assistance. Some fall through the cracks. And others operate on a scale of as much variation in function as most humans.
Personally, what I know about my own illness is that I have the symptoms to make me way sicker and more limited than I am. But for whatever reason, despite having some serious times I've not worked, I've managed to get the education to do what I do and then to have a reasonably successful career. I wouldn't have chosen this if I knew what my future held, but I did and I live the life I anticipated. Sort of.
My major point is that I am there. All the time. You might notice things that are "strange" about me, and in my case I talk about taking meds because it helps explain some things, and you'd surely note my pupils are huge, but basically I'm totally invisible.
And for the record, I have never threatened or harassed anyone.
Getting agitated
I'm a little on edge about lawnwork anyway right now. My landscapers (in a complicated story) somehow accidentally pulled out my beautiful rhododenron bush this week when the directions were specifically to leave it. I'm very sad, and I don't reminded of other people's lawn work.
Of course that won't matter, and someone has been doing something that sounds like dental drilling for 45 minutes. My teeth are on edge. I want to just leave but my shorts are still in the dryer.
Today is stressful anyway. I have to go check my bank balance. Then I have a hair cut. I finally have a stylist I love and trust, but my hair is so curly that summer cuts are tricky. Just a little too much off and then on humid days I have hair sticking out everywhere. This year I'm already fighting that effect because I have a ton of hair regrowing from falling out last year as my body adjusted to extremely high dose Depakote. I have my regular hair and then under it is a fluffy little layer of 2 inch, very fine strands. The under layer pushes my hair around into something hard to tame. On the other hand, this is the easiest time of year to style my hair, and that's something.
Then I have to go to get an estimate arranged on a new roof. I have one person coming already, and I need to check this other place which should take credit, which might make this more manageable. I had hoped to put this off a little longer, but my mother tells me it is TIME.
It's funny how I've owned a house for 5 years and each time something major goes wrong it still feels so strange that *I* am the grown-up who has to fix it. This last year has had a lot of things...my toilet needed new insides, my water heater died, my dryer had an issue, my carpet was professionally cleaned (that's annual), my garbage disposal has an anger management problem which I suspect means replacement eventually, and I have to paint the porch, change the shutters, and get a new roof and gutters (with gutter guard). Which means my stress levels are very, very high.
Please let this estimate be lower than I think....
Of course that won't matter, and someone has been doing something that sounds like dental drilling for 45 minutes. My teeth are on edge. I want to just leave but my shorts are still in the dryer.
Today is stressful anyway. I have to go check my bank balance. Then I have a hair cut. I finally have a stylist I love and trust, but my hair is so curly that summer cuts are tricky. Just a little too much off and then on humid days I have hair sticking out everywhere. This year I'm already fighting that effect because I have a ton of hair regrowing from falling out last year as my body adjusted to extremely high dose Depakote. I have my regular hair and then under it is a fluffy little layer of 2 inch, very fine strands. The under layer pushes my hair around into something hard to tame. On the other hand, this is the easiest time of year to style my hair, and that's something.
Then I have to go to get an estimate arranged on a new roof. I have one person coming already, and I need to check this other place which should take credit, which might make this more manageable. I had hoped to put this off a little longer, but my mother tells me it is TIME.
It's funny how I've owned a house for 5 years and each time something major goes wrong it still feels so strange that *I* am the grown-up who has to fix it. This last year has had a lot of things...my toilet needed new insides, my water heater died, my dryer had an issue, my carpet was professionally cleaned (that's annual), my garbage disposal has an anger management problem which I suspect means replacement eventually, and I have to paint the porch, change the shutters, and get a new roof and gutters (with gutter guard). Which means my stress levels are very, very high.
Please let this estimate be lower than I think....
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