Across and Inside my Universe

Unsafe

Well, I'm not safe.

Lability is uncomfortably high (I hope I'm using the term correctly).  My state of mind, my emotional perspective, keeps shifting so much that any decision I make, even fully believing and commiting to it, I can be doing just the opposite five minutes later (or half an hour, hour, etc.).  The place from which I am interacting with the world from, feels as though it's on a mess of shifting tides and currents.

Part of me thinks, well, isn't this just weakness of character, not being able to stick to anything or operate from a stable state of self or being or mind or whatever?  That word, stable, though, is part of the key.  The whole shifting currents thing, is another.  I'm NOT STABLE right now; I'd not call myself UNstable in a crazy, psychotic way, but  . .. well, basically what I've described above.

It is tempting to fall into the trap of thinking, hey, since I'm seeing this problem, and acknowledging it, doesn't that mean I'm functioning well enough to be or feel safe?  I've fallen into that trap before.  While identifying this stuff, prioritizing it, taking some actions with it, etc. are positive and functional, healthy things, the very nature of being so . . . well, volatile isn't quite the right word, I'm not going to lash out in an extreme way (although I guess suicide and other things actually are pretty extreme) at anyone else (hrm, I've been highly irritable and rather snappish, which I've been not pleased to have acted out as much as has been, the last few days; it has been uncharacteristically frequent and drop of the hat.)  I've been quite reactive and on a short fuse, not even necessarily being aware of having a short fuse, until I snap at my husband.

I've been irritable and snappish before, without the high lability; mixed states suck.  There is more here than just that, although mania and depression certainly make matters rather worse . . . 

I have therapy tomorrow, and I don't know if my psychologist will recommend the hospital.  We've already taken some familiar and not so familiar steps, around here.  Any excess medication my husband has hidden.  A step taken once before, for a time, that I've asked of him again, is to not leave me alone at home for three hour+ stretches.  Two hours feels like it'd be kind of rushed for anything extreme, but that may be because I'm particular.  I hate to scare him like this, but on the other hand it feels the responsible thing to do.

So, he may need to stay home from church on Sunday.  This would carry us to next Wednesday, when I'll be home alone for most of the rest of the week.  If I am still highly changeable/feel like my behavior could turn 180 in the blink of an eye/feel like my mania or mixed state or whatnot is pushing me to danger, then we'll have to probably hospitalize me or figure something else out.  I am REALLY hoping that I'm not like this, then.  It usually has only ever lasted a few days, 3 or 4 tops, but I had this a week to 10 days ago for 4 days or so, and now again and it's just rather scary.

I dunno, maybe I'm a wuss and not taking responsibility, when I say that I can't seem to be able to say that what I decide right now will be the place from whence I could reasonably still be operating an hour from now, etc.

The pull to reckless and harmful, serious things of a variety of types is strong, although I am currently fighting them.  Some things you can't come back from, and some you maybe  shouldn't (okay, definitely stuff to bring it up tomorrow in therapy.)

Edit:  This talk of lability, and danger, and unsafeness, and my assessments thereof, are based mainly on how my psychologist has assessed me most recently last week when discussing the same kinds of things, as well as in the past, the few other times that it has been this bad (all since early 2012, really).  Things I'm saying here are based on concerns he's discussed with me about my safety and stability and such when I'm in this/these states, having experiences as I've been this week and being all over the place, and stuff.  My safety has been a major issue and concern to him, in many of the ways I posted about here, and some things I haven't posted.

Edit:  Also, I do have upcoming appointments with my psychiatrist, later this month and then in August as well, since my urologist cleared me for going back on psych meds/back to the psychiatrist (I know one doesn't necessarily mean the other but he has pronounced my kidneys fine, after a CT and a cessation of the most distressing symptoms . . well, I may need to check one more thing with him, but he did clear me.)  Still, I may be contacting her sooner, by email I guess, if my psychologist thinks I need to go to the hospital.  Maybe her emergency nmber would be better, I don't know?  I' ve left a message on there before.

When Your Doctors Don't Believe You

When your doctors don't believe you, you feel like you need to prove your problem/theory/what-have-you, if it is provable.

In my case, the Lamictal IS affecting my urinary system.

So the not brief but explained as briefly as possible history/experiences that I explained to all three doctors in September about these issues, WAS relevant, and I don't have to think of myself as a rambly, irrelevant person.

You see, I do ramble and/or am irrelevant at a variety of times to some degree or another.  BUT, I try to not do that at the doctor's office.

See, when I went and saw my GP a week after the Instacare guy prescribed oxybutynin, I did mention the bladder, urethra, and kidney discomfort/pain.  My GP said to keep taking it (because I'd laid out brieflly what happened after I stepped down off Lamictal, last year, unsupervised; it was what I consider to be likely a textbook case of how epically bad stopping a mood stabilizer on one's own can be.)

So, I kept taking the oxybutynin and the Lamictal. However, over the last three months the abdominal and sometimes side/back kidney pain had been becoming more frequent and too common.  The bleeding had gone away, the bladder was somewhat calmed down (although not like last March), but it still seemed to be over-producing as well as could only go about 4 hours, so it was still getting me up at night.  (Also becoming harder to sleep with the pain and discomfort).

The worries about it and the physical interference with good sleep are two factors in why I think the mania has been breaking out more the last few months.  The other factor would most often be stress from a juvenile court case in which I faced speaking in court, and other things (It's about the victim, not me, but since I'm not going to expose her on here, I'll risk sounding like it's all about me.)

These things all acted to marginalize the effectiveness of the 150mg Lamictal that I've been taking.

A week ago, it was getting so bad I wanted to go to my pyschiatrist, with proof, so I'd be believed.  Plus, I wanted it to stop.  So I cut my dose in half for a few days.

I did not expect such a quick or significant difference, figuring the urinary tract had been so abused for so long it'd need time to heal.  Within a DAY a significant amount of pain and discomfort was gone.

I knew that cutting the dose in half wasn't the wisest idea, so after a couple days I went back up, but only to 100mg.  I couldn't bring myself to take 150 and be that badly off, again.  The pain and discomfort went back up within a day of bumping back up, though not as bad as it was at 150mg.

Proof, anyone?

Now, I did consider that my judgment may not be the best right now, what with all the mania and stuff.  Also, the last time I took myself off Lamictal, the end results were . . . bad.

Still, this time it will be in partnership with my psychiatrist (as soon as I email her later tomorrow).  If she says to keep taking it, which I highly doubt, I'll do it until we meet and can figure something else out.  However, I hesitate to keep taking it for longer than needed to step down off it, because after so much abuse to my bladder and kidneys, what's the risk of permanent damage?

So, yes I took medical matters in my hands, but I didn't intend to do it for long, and as well the doctors didn't believe me before anyway.  Just because my psychiatrist said that this isn't a side effect of Lamictal, doesn't mean in my opinion that it can't EVER be; it's not a KNOWN side effect, perhaps.  Also, there are statistical outliers, people for whom their bodies' response to medications can or does fall way outside the reasonably or even rarely expected effects.

It's happened to me before, and now again.

I am regretful and a bit fearful that there is one less med between me and the mania; however, I'm on some Seroquel, which I wasn't last year, and I've handled twice as much as the current 150mg before, I think even over that to 400mg.  It was eventually stopped because at the time it was being used for depression, and didn't do much for that.  I can tell it's helping stabilize mood a bit, now, though.

Now, I actually don't think the doctors were wrong in what they considered and what that led them to recommend, AT THAT TIME (although they were still wrong, then, about the bladder/lamictal thing.)  There were several seemingly medically reasonable (to me) reasons to suggest going forward as the doctors had said with the Lamictal and the oxybutynin.  I'm glad I did things their way for long enough to know that not following orders wasn't what was going on.

My GP considered things with his knowledge, but also deferred to my psychiatrist as, I think, was proper to do given the risk of possible death if I stopped the mood stabilizer, since if I even THOUGHT I might start down the bad path from earlier this year again, I wouldn't be able to live with myself.  My psychiatrist, of the three doctors, gave me the best impression that she was weighing the pros and con of a medication that was possibly (though not likely as she did tell me Lamictal doesn't do that) harmful, against the pros and cons of stopping that medication.  She investigated anew with me how effective I felt the Lamictal was, and such, and I appreciated her doing that; it helped me feel that my experiences would all be a part of what she decided.  She said for me to keep taking the Lamictal, and I did, though reluctantly, because I'd been so tired of the bladder problems.

Knowing for sure, now, it IS relieving to know that something hopefuly fixable (after this long, has there been permanent damage?) is behind the kidneys/bladder.

I don't know that anyone necessarily cares about all this, but I don't know what audience I have in mind or think I have with this blog, so I'm all over the place with what I post and don't post.

Sleep Paralysis, the Hallucinogenic Kind

You do NOT want to experience this.

It's beyond the most horrific, terrifying, deathly, panicked, frantic thing I've ever experienced.

I've had this once or twice before, and had forgotten all about them.  Last week I had one.

I woke up, but I couldn't move.  The fact that I couldn't move didn't occur to me until I tried to fend off the evil entity(ies) coming through a portal a few feet away into my room.  They were coming in to kill me and take me away to a nightmare of eternal horror . . . I tried to fend them off, there was a specific motion I was supposed to do to fend them off, but it was then I found out I could not move.

I then kept trying to shout, "WHITE! . . . WHITE!"  over and over again, because either that would summon the right kind of help to stop them, or it would summon my husband to my aid.  I could have sworn that I actually yelled this, but when I finally was able to move and went out to my husband, he said he'd heard nothing.  I still felt the evil so strongly that I performed the movements a couple times at the physical object in the room from whence the entities were portaling, before I left the room, even though I knew it wasn't real.  It FELT real.

 I found a variety of websites, many of which use the same painting to represent this problem.  I've also read a wide variety of possible durations for this: anywhere from a minute or less, to several minutes, up to 8 minutes, and some said up to an hour or more!

There are some things that make you more susceptible, like irregular sleep schedule, lack of sleep, stress, sleeping on your back, and other things.  I found one site that mentioned bipolar being a potential factor.  I found another one that mentioned, with a technical term for something that seems like the exact opposite of sleep paralysis, if you are prone to moving around in your sleep, performing actions, etc. then you might be prone to the paralysis.  I guess both of them have your sleep/wake out of sync with the paralysis you are supposed to have only while sleeping.  I do tend to move around in my sleep, even hitting myself or throwing punches, and other things, as well as some infamous sleepwalking episodes.  Still, out of all the sites I looked, almost all of them did not mention these two things.

Some sources listed a few things you could do during the episode (although I'm not sure if I'd be composed enough, with the overwhelming terror), such as wiggle your fingers or toes (apparently extremities have a better chance of breaking through the paralysis).

Someone even made a movie of it!  I can't imagine anyone who's experienced the hallucinatory form wanting to bring those feelings up again, but then I don't understand horror movies either.

Bipolar Extremes: Responsible or Not?

That title is very black and white, is it not?

In a recent Psychology Today blog post, entitled The Elephant In The Bipolar Room, it is proposed that what if the paradigm regarding whether bipolar people caught in the extremes of their illness, the dark depressions and the really high manias, shifted from the view "that we are incapable of remaining in control when mania and depression reach a certain intensity", to something like "what if we could be highly functional while manic or depressed?"

They then go on to talk about how this might lead to, rather than being focused on the dis-abledness of being bipolar in the 'can't control one's behavior' paradigm, in which the goal is to remove the bipolar symptoms as much as possible, instead being focused on the capability of the bipolar to function during intense states of mania and depression and why some cannot (and how to change that from a behavioral perspective).

This was one of the first major internal struggles I had, and still have, regarding my bipolar diagnosis, living with it, trying to be able to live with myself (and behaviors influenced by the illness), and still hold to a standard of personal responsibility. 

One of the first really hard-hitting notions that struck me was that if I was bipolar, I might be more likely to sin than other people.  This distressed me greatly on a variety of levels, and I was quite upset about it.  However, eventually I followed a path to realizing that IF the illness meant I might sin more than other people, the Savior's atonement would make me the same as everyone else.

That's a gross simplification of the repentance process, including ignoring the fact that to repent, you have to take responsibility for your actions, among other things.  Not just sinning and saying while you do, "Oh, I'll repent later . . ."

Still, that was one big, early concern, and a nice, spiritual answer to it.  My struggles there were more about worrying that I'd be a bad person and the relief I felt when I realized the Lord would make me as everyone else, than it was about trying to dodge personal responsibility for my actions.

The issues and struggles I had, and still have in some ways, with issues of, "Does the illness become so severe that my judgement is impaired, say, as if someone was forcing you to get drunk, and then you did irresponsible and bad things?  If someone forced drink or drugs on you, I'd think you wouldn't be responsible for your behavior.  It is my feeling that IF the illness tampers with the judgement center(s?) of the brain, then how can you entirely have been said to be acting and choosing to behave in a manner that you would choose if the illness was NOT tampering with your judgement?  My psychiatrist in fact says that your (my) brain goes into an altered state, when manic and such . . . she is of the view that you can't be held responsible, in that state.

On the other hand, though, I was raised to take responsibility for myself.  There's also the spiritual implications . . . involving repentance, and other things.  In my religion, I was raised that we on earth have free agency.  We have the agency to choose, and behave in ways that we are responsible for.

Do I feel that there are illnesses that can impair, interfere, or even take away your ability to choose as a competent, capable person?  Yes. 

Would you hold someone responsible for running out into the street and causing a car crash, if internally they truly, really believed that they were super strong, invulnerable, and there was a baby crying in the middle of traffic that they had to save?  I don't think so.  I know I wouldn't.  They'd need some psychiatric help, if they survived, but I wouldn't judge them.

On the other hand, things are not often black or white, that clearcut.  I believe that choices can be made that may be influenced by your illness, but that you still could choose to avoid the bad behavior, although it's much, much harder to do so than if the illness wasn't coloring your entire experience of the world and how you interact with it.

What I eventually decided for myself, without having answers to some or all of these other aspects of the issue, is that I will always take responsibility for myself, as soon as I return to a state of mind where I can do so.  This implies that perhaps I feel like I enter states where I feel like I'm not responsible; I don't think that's how I'd put it. 

I'd put it more like . . . . your instincts to be responsible, apply the rules of life that fit who you are when not ill, are either hidden by a cloaking device, or covered in camouflage.  At your manic worst, you don't even realize there's something you need to search for, if it's really really bad. 

At somewhat lesser levels, it's like a Where's Waldo picture, sometimes you can pick Waldo out right away and/or easily, and sometimes you put alot of effort in but have a really hard time finding him.  Sometimes it takes just a moderate, but sustained effort.

This is where AA's HALT comes in: Hungry, Angry, Lonely, Tired.  If one or more of these are present, it's going to blur your focus on the Where's Waldo hunt.

These aren't perfect analogies, by far, but they're the closest I've ever come to being able to describe how these issues, and mania, are experienced by me.

Back to the Psychology Today post:  I think it's beneficial to question the prevailing view to see what might happen if people or society took a different view.  I don't think it's as simple as one view or another; I think life, and illnesses, are sometimes messy, and a balanced view would be somewhere in the middle, but with an open mind to looking to learn from those who seem to have learned to function during their manias and depressions (managing these (including w/meds) and learning when to take care of self, being part of this though), as well as having compassion for and working with those who seem to be unable to cope in the specifics of their bipolar illness.

Not judging either end of the spectrum, nor the middle, but learning from all positions, from the variety of shades of grey, understanding that there's a wide variety of experience and illness.  Some may be much more impaired than others, some to degrees that many people might not understand.

This subject really has felt like an elephant in the room, to me, for a long time now.

One Noisy Neighbor Out; A Pair of Them In

In the decade we've lived here, we've rarely had problems with noisy neighbors.

Our last one, who moved out two weeks ago, was an exception.  Her stereo was in the bedroom, or at least the one she preferred to listen to, was.

In the last 3/4 year I've gotten more migraines than in the previous 5-8 years.  Lotso stress and such.

There's nothing like going to a cool, quiet, peaceful bedroom, putting your sleeping mask on to really keep the aggravating light out of your migraine-sensitive eyes, and a few minutes later you start to hear her playing music.

ARGH.

Sometimes I could almost make out the words, except the beat was thumping too loud.  Other times it was half that volume, but still loud enough to keep me from resting.

I tried several different things, but eventually resorted to banging my cane on the ceiling.  It took her awhile to get the message (maybe cause her music drowned me out sometimes?)

About 6 weeks before moving out the noise quit being a problem; hmm, could her love of listening to music in her bedroom be that important to her?  I'd have tolerated much more out in the living room than I would in the bedroom; how hard is it to have your stereo out there?

So, this new couple seems to  be "night" people.  At first I was hoping they were staying up late to unpack and put things away.

The seem to have a sort of schedule, however, of staying up until midnight or 1, and then one of them at least seems to get up every two hours in the night.  They could just have a job that ends late, or sleep much of the day, or have medical issues getting them up at night, or have the munchies, or whatever.  I don't mean to sound whiny.

Tonight, though, it sounded as though they were watching TV, in their bedroom, at 1:30 am.  This could be a problem.  Especially since they seem to be night owls . . . I'll have to see what all they are doing, and if it's loud enough to interfere with sleeping, if it's something that people could be reasonably expected to be taking into account the time of night, and that neighbors are sleeping (or trying to.)

Am I catastrophizing a bit?  Probably.  More, though, I'm just venting, because we just got over the last noisy tenant overhead.  (We're in the basement/ground floor).

Also, sleep is a big deal for bipolar disorder, so I'm a little sensitive on the subject. 

I don't want to feel like THIS in the morning.

I note that when I look at the three pics in this post? I have a strong negative reaction to the old lady/broom one, curmudgeon comes to mind. The young lady pictures? A positive feeling about them. No matter the age, people have a right to a restful bedroom for sleeping, old or young. I just thought it interesting to note this, and I have to keep resisting the urge to pull the "negative" one down, lest it make people think that I'm an old curmudgeon . . . Fight those stereotypes!

Also, I don't talk to them face to face, as a reasonable adult might, because I'm afraid to.  Can't do it.

Second Psychiatrist Appointment of the Year

This was in June. 

Since I'm going to be seeing her again this next week, I'd better update the blog with this exceptionally positive step forward in our relationship.  Not perfect, but positive between her and I, to this degree, was unexpected.

I even brought up being afraid of her, and the last time I did THAT, she yelled at me.  Things went much better, this time.

She was running late, this appointment.  It was late in the day, and my appointment was for 5:20.  When she came out of her previous appointment (I assumed) right then, I prepared myself to get up and go in.  Instead, on her way back to the office, she called to a different patient, and as she passed me she apologized for being behind.  I indicated I understood and that it wasn't a problem, which she seemed to appreciate.

I could see that the next people to arrive, were startled/surprised to see that someone else (me) was called in, at the appointment time they thought was theirs.  I believe she apologized to them as well.

I like that she's conscientious of her patients like that.  It gave me the beginnings of a feeling inside that maybe today might be less confrontational in the past.  Just an inkling, really.

I forget what I first mentioned, which is a shame because she usually starts our discussion with something springing from that.  Ah, I remember, she commented on my positive demeanor as I settled myself on the soft green couch.  This startled me; she was the second person in three days to use those words to describe me.

She asked about it, and I said maybe it was from having dealt with formal church discipline and now it wasn't hanging over my head, I could move forward?  I'm not sure why I said that; it still hurts deeply, but with a bit of time I've come to see that actually it is better, now, moving forward with that behind me.

She went on with the discussion for a bit but her curiousity had been peaked and she had to return to the church discipline thing, ask about it, what it was, how it worked (briefly, very), why/what for, and such.  I had thought what for would be obvious, but I briefly, in about 40 seconds or so, described the situation, including that they were disciplining me for doing something for which my mania was a contributing factor.

She got indignant on my behalf, saying things like, "Mania is part of your illness; you enter an altered state of mind!"  She went into this for a minute or two, aghast that they would penalize me as harshly as they did, for something she feels was . . . well, that I wasn't in my right mind for, wasn't acting completely from who I'd choose to be were it not for the mania. 

For myself, I've always taken responsibility for myself and my actions as soon as I return to a state of mind where I can do so; however, I didn't frame it that way for my clergy, lest they think I was trying to not be responsible.  I was being responsible, but  . . . I framed it as, the mania was a contributing factor.

She went on to tell me that I should educate my Bishop and congregation about my illness and the way it works.  No one actually has ever outright said to me before that you go into an altered state of mind.  It would be nice if sometime someone would actually tell me more about it; yeah I can read on the internet, but I need a doctor to tell ME. 

My first shrink to my face thought I was borderline, not bipolar, and when I said that to my psychologist he pointed out that, well, he prescribed a mood stabilizer, and that'd be unethical if you're not bipolar . . . I never thought about it til now, that after that I just went into symptoms etc. with each new psychiatrist, and never asked for any education; no one had ever explained anything to me.  I got more explanation from the government-contracted shrink who evaluated me for disability than I did from anyone else, ever.

So, her advocating for me, showing that she cared that people had/were judging me for things that at the very least were influenced by mania, and that she was indignant that they wouldn't know or consider my illness to be much of a contributing/mitigating factor at all, well, this made me feel good, and more importantly, made me feel more connected to her as my doctor.  This strengthened a . . .turbulent therapeutic relationship.

As she made some notes and asked something to further our discussion on other stuff, I worked in my issues with her (some of them), such as that I was intimidated by her, scared of her, and that when she threw out advice to me as to stuff she thought I should be doing, stuff that I felt didn't fit my belief system (like the previous appointment's ridiculousness where she told me working on my marriage and family was selfish, I should look to serving others instead, I took this as her karmic point of view), that I felt like they were harsh, rigid orders and that she didn't understand or accept that I needed to take what I could from her advice, sort through it, despite any difficult feelings about her manner of presentation, and keep what worked for me and set aside what didn't.

She heard me out, and seemed a bit astonished that I didn't know that she wasn't ordering me at all; that she said what she did, and that it was my life and my decisions about what to follow and what not to.  That of course we're from different backgrounds, and that it's my life, I"m the one living it and not she, so who better than I to sift through what she advises and make my choices.

I was kind of stunned; I thought that if only we could have had this conersation 18 months ago!  I was so bouyed by her remarks I added some other things to the discussion of our relationship.

As far as meds, at our first appointment this year I had just gotten to 150,g Lamictal, with a mild non-sunburny rash.  In a different place than the last two times (and according to my hairdresser, there's an allergic-looking rash on my scalp, too).  I said the Lamictal was doing ok, though I needed more time to be sure.  I actually mentioned adding Seroquel; we'd tried it two years ago for depression, which it did not work for.  I didn't have any noticeable side effects except for being sleepy alot.

She said, "I thought we stopped that because of your PCOS?"  I was confused; what does Seroquel have to do with that, does it make it worse?  I ignored asking that and said, "No, we stopped it because it wasn't working for the depression; however, isn't it supposed to be a mood stabilizer, work on mania?  It didn't cause me side effects other than tiredness, so what do you think of trying it again?"

I went on to mention, a bit embarrassedly that I'd seen on someone else's blog that they were on these two meds.  Of course there's no guarantee they'd work well in combo for me.  Still, she seemed to want to know all of why I was asking, and so I told her. 

She was very open to it and, in fact, had prescribed the Seroquel at our first 2012 appointment in May.  At the June appointment, she asked if the meds were smoothing me out, making me serene.  They were definitely helping, and I told her, but I wasn't what I'd call serene.  In fact, I wondered if we needed to raise the Seroquel?  She held it at 150mg for now, and after some key things during our appointment had made her actively diagnose me w/ADD herself, instead of relying on other shrinks' diagnosis, we discussed Vyvanse.

I'll be trying it at what is it, 30-40mg?  Since the 70 I'd been on was seeming to be too much.  I'm just in a mess of getting the new dose approved by Medicaid, and dealing with her incompetent secretarial substitutes as her main secretary has been on two one-week vacations in 4 weeks.  UGH.  I may not have the prescription by this appointment!

Oh, one other BIG thing, is I will be going to a monthly group she holds there, for ADD adults.  No fee, at 7pm.  My appointment is at 6 or 6:30.  I'm nervous about this, but somewhat less so after clearing the air in our relationship.

Bedroom Progress - Small Moves, Ellie

I started in this corner of the room. Floor only, as I'm doing a mostly garbage pass, although if something's on the floor we'll put it to donate, chuck, or find a home or temporary home for it until I can tackle everything on top of everything, which is pretty much taking up the space that needs to be homes for (organized) things. These pics are the same as the previous post, pre-cleaning, but they're a visual aid.

I cleaned just about up to the small child's chair you see in the corner of the room in this picture; a bit over a quarter of the room's circumference. That small chair, by the way, was made by my dad for my daughter when she was THREE. She's in Junior Highschool now.

That may not sound like much to some, especially since it was just the floor, but I was dripping sweat after 20 minutes, and had filled a kitchen-size garbage bag.

As well, I've been struggling with just doing dishes and laundry (not even folding) on a regular basis, let alone most other chores; that's kinda one reason the place has gotten to this point. Yes, doing things consistently, or at all, is a struggle when I'm depressed, anxious, trying to distract myself from mania (although mania does sometimes result in a burst of productivity, which I'm afraid may be the impetus behind this project). Most of the time though I'm fighting the things mania urges me to do that aren't good; that means there's not alot of me left over for ADL's (activities of daily life, as they say).

Regardless of the reason for doing this, I'm hoping blogging about it will A) help me stay somewhat organized about it, B) help my sense of efficacy and build upon it as I can look at the blog and see the progress I've made, C) help keep me motivated and carrying on with this even if the urge of productivity should desert me, and D) maybe keep alive some unreal notion that my non-existent blog readers might be sending me thoughts of support.

Yeah, that last one, not gonna happen. I need to do this for me, anyway, and I recognize that. Support doesn't hurt, though!

So . . . small moves.

I've been feeling overwhelmed over the last 24 hours, just looking at the whole room. As Adam Savage of Mythbusters would say (and that's how I hear it in my head), "There's your problem!" I have problems with looking too far into the future, looking at problems upon problems (it's turtles all the way down), as if I was looking at the humongous pile of food you need to eat over the next month or year, and feeling overwhelmed by it all.

We don't eat all that at once. It's made up of smaller meals, and those are further broken down into food groups, or various ingredients, or various steps of the recipe.

You can make your moves as small as you like; moving forward, even if it feels equivalent to maybe one frog hop, is the important thing. Just because it feels like a frog hop, doesn't mean it IS one.

The first day, I made a list (a HUGE one), took and posted the photos, and blogged about this. The next day, I took one of the categories of items I needed to research selling/trading, and started that process. (I'll be trading some old collectable gaming figures for a game I want, that takes up less than 1/4 of the space the figures did; a win/win, there. Boardgamegeek.com is great for exchanging, occasionally selling, old or new games and related items.) So, a small move.

I did not beat myself up inside about how little that seemed to accomplish in relation to the whole; the urge to do that came to me as it so easily does, but I countered those thoughts with, "No, it's not too little. You are no longer stuck and you are moving forward. FEEL how good that feels after being stagnant for so long!"

And I did. Feel good, that is. I transformed my negative thoughts and feelings not just into banishing the negative, but I created positive thoughts and feelings to replace them.

My mantra going forward will be, as you may guess, "Small moves, Sara. Small moves."

(P.S. Who wants to watch that movie now? Me . . .)

What a Not So Beautiful Mess . . .

To riff off of a Diamond Rio song title . . .

I'm being brave in posting this. I want to track my progress on organizing this, although the rest of the house is a mess too (mostly not as bad, but this is BAD, so that's not saying much).

This is the master bedroom in our apartment. Much of the mess is craft items, information, patterns, and publications. There's a big variety of crafts and materials: Beading/jewelry making (including chain maille jewelry), knitting, crochet, spinning, and weaving (that's a four-shaft table loom under a makeshift dustcover), Rubber stamping, scrapbooking, and a variety of paper crafts, with a variety of die-cutting stuff (including a Cricut, a . . . robotic die cutter, if you will, for those who aren't familiar with this stuff), and a big wooden rotating tower of ink pads, reinkers, ink pens, and other things.

I have fabric in various places in the room, handed down from my mom when she was clearing it all out; I have no sewing machine though except a tiny one designed for stitching in scrapbooks and on other paper crafting projects. The fabric has come in handy for a variety of my daughter's school projects, though. I've even saved jeans she's outgrown, and jeans of mine as well, for a variety of recycled/upcycled craft projects. It's a good thing I saved some of my jeans that I'd lost too much weight for, because I gained the weight back and needed them. Lol. I'm working on losing weight again, though.

I have a couple drawers of adhesives, from a Xyron laminator/magnet maker/adhesive applier, foam tape, masking tape, double sided tape, photo corners, glaze-type glues, rubber cement, tacky glues, post it note glue, glue for metals, and a whole host of other adhesives for different purposes, materials, etc.

The thing about all these crafts, is, the last two years mostly doesn't count for me not touching them much, due to a year and a half of surgical recovery; with all the pain knitting simple garter stitch was the most I could handle, and I've picked it up now and again. Also, the last two years my husband's been either out of work, or at two couple months long temporary jobs . . . with jewelry making, buying the findings like jump rings, crimps, clasps, bails, etc. can add up, and so as with some of the other crafts, running out of consumables has limited those.

Also, I suffer from a variety of mental illnesses, disorders, etc. You'd think an OCD person's bedroom would look neat, but then there's ADD, bipolar with lots of depression, etc. and everything's overwhelming. These issues also lead to a lack of desire to do anything, including favorite interests and hobbies. My therapist has recommended I not ditch everything, since once (or if, in my mind) my depression improves I'll regret having gotten rid of everything.

SO. With that in mind, I'm analysing how often I've used stuff, over the last 6 years or so, and factors affecting that, in order to help with what to ditch and what to keep. The last couple years it's been mostly knit, with a little crochet and a moderate amount of weaving. A little spinning, too. The couple years before that, there were sporadic bursts of rubber stamping (often related to mania, but not always), mixed with alot of knitting and the like. Also alot of beading/jewelry making during that period. The couple years before that, was when I started the jewelry stuff, as well as the knitting/crochet/tiny bit of spinning. Scattered Rubber Stamping as well, with a year of digital scrapbooking. It's been longer since physical scrapbooking, but that's mostly due to organizational issues (ie, I can't find my stuff) as well as some money factors (do you know how much the scrapbooking and stamping industries make? It's ridiculous. TOO many commercial products, I think a simpler, less expensive approach will suit me better.

Still, at some point when you're in an apartment, you can't just leave all that space being taken up by stuff you don't use . . . I need to figure out where to draw the lines. It's gonna be hard.

I can do it, though, one step at a time. I have a budget of $200-$250, from birthday and special occasion money I've saved up for awhile. That doesn't seem like much compared to all the stuff in there; some small portion of which needs to go in other rooms.

There's SO MUCH organizing info out there, though, that it's overwhelming. I'm starting with a blog or two, like http://iheartorganizing.blogspot.com/, which has some great ideas and showcases a variety of organizing products, ESPECIALLY in use, so I can get an idea of what may and may not work for me.

Wish me luck? And also, that I don't get so overwhelmed I just quit.

No judging my mess. I should have an apron that says that . . . lol.

Next post on this project will be the list of stuff that I've come up with that needs doing in there. Although, with the rest of the house being a mess too, I'm not sure what I'll do with the stuff that gets kept but goes in another room, before I've cleaned and organized the room it goes in so there's a place for it . . . . it's like a Mobius strip. Or MC Escher stairs.

The Cheapest Care Possible

I don't want to offend any nurses out there, especially the ones who can prescribe.

BUT, when you have as many co-morbid (proper term?) psychiatric conditions as I do, AND especially when you have as many chronic physical health conditions as I do, you really would feel most confident having a psychiatrist, an actual DOCTOR, prescribe your psych meds, since you have so many conditions and medications that can interact with each other.

Now, as I'll apparently be seeing an A.P.R.N, which is a psychiatric prescribing nurse? I'm sure that they have extra education for that, and plenty of experience since they are working for the county's behavioral health system, and see the most disabled and/or severe cases, since they only serve those with Medicaid/Medicare. Lots of people on disability with either of those insurances, so this would be where they go . . . the LCSW I saw for intake interview went out of her way to reassure me that the nurses see severe cases and are very capable (does this mean she thought I was a severe case, or just that knowing they treat severe cases all the time means they are competent to treat anyone?). I got the impression that seeing a nurse instead of a psychiatrist for meds is something alot of people aren't the happiest about.

Anyway, while I'm sure these nurses are capable in many cases, I just feel like I have so much going on both mentally and physically that I'd only be really comfortable knowing a doctor was seeing me; how can I know that these nurses know enough about all the physical health stuff besides the mental health stuff to be able to manage all the issues?

Then again, who WOULD be happy that they'd be seeing a nurse for what they've traditionally thought is a doctor's role . . . I think this is partly based on that, but still . . .

There is part of me that feels like, because this is a government-funded mental health care system, as well as government funded reimbursement for them, that this is why they use the lowest-level providers possible; I was told that they do have ONE psychiatrist, but I'm guessing he only gets sent the most complex or resistant of cases. I was told I'd be seeing a nurse.

I feel like, because I am dependent on government assistance for this, that I will be receiving a lower, cheaper (not necessesarily incompetent) level of care than I would if I had private insurance. I don't think you can argue that these nurses AREN'T less expensive than psychiatrists, which means they are cheaper (although I am not trying to imply that their care is valueless or without dedication, expertise, etc. - it costs less and is less educated than a doctor/psychiatrist, though, is all I'm saying). This makes me feel like I am a second-class citizen, but then, without regular insurance, I kinda feel that way anyway.

I'm sure if something like this was posted over at Shrink Rap, there'd be an outcry from prescribing nurses, and maybe even non-prescribing ones . . . the thing is, though, I feel that prescribing nurses should SUPPLEMENT what a doctor does, not REPLACE them, and it feels like in this case they are being used as replacements. THAT is what feels wrong to me, what feels like I am being given the least expensive care they can get away with.

I'm also annoyed at all the hoops and forms I have to jump through and deal with just to see a nurse . . . I'm sorry if that offends anyone, nurses are very valuable, but I do NOT, I definitely do NOT see them as the primary provider of the medical side of my mental health care. I do not think that is appropriate.

I'd prefer something like initially seeing a psychiatrist, or a psychiatrist with the prescribing nurse present (they'd never do that last, too expensive) for the first couple of appointments and then see the nurse the rest of the time, with maybe a twice yearly check by the psychiatrist; more often if moderate to high problems come up. THAT seems like it'd be more, well, working with both a doc and a prescribing nurse . . .

I guess this post is amounting to a big whine, that might affront a variety of nurses . . . but it's how I feel, and I don't think REPLACING psychiatrists with prescribing nurses is a good thing for mental health care. Supplementing, okay, I can work on getting used to that . . .

I'll have to get used to seeing just a nurse, I guess, but I will not be happy about it. And here I thought I'd come to a new, more open mind about my next shrink, about being more open-minded, more open to different personalities and learning whatever comes to be learned from them. Turns out, I don't get a shrink at all. I'm feeling like I, and other Medicare/Medicaid people, must not be worth it, in the eyes of the government and the people who vote in the people who fund or restrict how such places are staffed.

 

About My Psychiatrist/Patient Relationship

My last appointment was almost two weeks ago, with the psychiatrist.

She's decided to keep me on 150mg Lamictal, though I told her I wasn't sure how effective it was. She said I need to modify my behavior, implying that I'm expecting the medication to take care of the problem.

You know, I can understand that and that's fine, I work hard on modifying my behavior anyway even if it often seems to be futile and frustrating.

The thing is, when I came back to her last November after not seeing her since July, and told her about my mania and the most troubling behavioral symptoms of it, she was all, "OH! We need to get you on some medication right away so you don't ruin your life!"

So, I feel like she's being a bit of a hypocrite; actually, what she's telling me now with, "Oh, modify your behavior," it seems the exact opposite of what she told me last November!!!

Now, regardless of whether a behavior is influenced by or triggered by my mania, I believe a person should work as hard as they can to modify/change that behavior. BUT . . . when the mania is pushing you, urging you, sometimes overwhelming you . . . . that makes it so difficult it feels impossible at times to just manage it yourself.

Another thing: If I only engage in the behavior when I'm manic, whilst other times I have enough self-control to keep from engaging in the behavior, as well as at these other non-manic times I don't have any desire or wish to engage in the behavior, well that to me says there's a biological factor influenceing and/or triggering the behavior. Meaning in order for me to deal with this, medication would be more than helpful.

I am frustrated though that so many medications have not worked out for me, but I can remember how moderately well the Risperdal worked, as opposed to how moderately poorly the Lamictal is working at 150mg. When I was on 200mg Lamictal, it felt like it was closer to the effectiveness of the Risperdal, but I can't go that high on Lamictal. We had actually been shooting for 300mg even.

I'd say the Lamictal is taking about 24% to 30% off the edge of my mania, while the Risperdal was more like roughly 55% or so. This is academic however since I can't go back on Risperdal.

I am also rather afraid of Lithium, given its high side effect profile (not sure if I'm phrasing that right.)

I think besides Lithium and Zyprexa, the only other medication might be Seroquel, which we tried last year for depression and it didn't work well for that; I wonder how it would do for the mania, though. We stopped the Seroquel (it was 300-400mg, I forget) about two months before the mania hit big-time. I will NOT take Zyprexa, after the Depakote caused me to gain weight; I can't deal with the diabetes risk. I've heard that PCOS (polycystic ovarian syndrome) is a pre-diabetic condition anyway, but I have no idea.

As far as I know, we've run through almost all of the bipolar medication options. Then again, I don't know much lol.

I'm frustrated with my psychiatrist for acting like a hypocrite though. I do realize that 25% to 30% off my mania is better than nothing. I did not put it in terms of a percentage to her, however, I just came up with that as I was writing this post.

Another frustration is that I'd heard Lamictal and birth control pills can affect each other; I've heard that either one makes the other less effective, or that both make each other less effective.

So I asked her, and she said that, if anything, the Lamictal makes the birth control less effective (I had mostly heard it was the other way around.) So I had my husband ask the pharmacist when he went to pick up my pills, and he confirmed what my psychiatrist said.

This angers me, because neither the pharmacist nor the psychiatrist told me of this side effect with potentially huge consequences. Granted, I wasn't on the birth control pills when I started the Lamictal, but when I did start the birth control pills, I emailed the psychiatrist, as well as discussed them and the reasons for them as opposed to the permanent solution to birth control I am working on getting comfortable with. So during this whole discussion about my fertility and deciding to end it, and why I'm taking birth control pills instead of doing something else right now, she never mentioned this important side effect. And neither did the pharmacist, though I thought drug interactions were part of their main concern.

I know no one is perfect, though. It just could have huge consequences . . . . this is the first time I feel my psychiatrist has not been on the ball, really sharp mentally, extremely knowledgeable, about medications and the issues related to them. So she can't remember everything, all the time, I'm telling myself, trying to not expect perfectiong. Still, of all the side effects to forget, this one is a doozy.

I REALLY don't want to do something permanent to my body, ie, the uterine ablation or whatever it's called when they freeze the lining in there, until I'm comfortable with it, until I've come to terms with how I feel about ending my fertility (what little there might be with PCOS).

I'm also frustrated with my psychiatrist for not wanting to deal with my depression; we haven't tried anything for it since the Seroquel last year. Perhaps she wanted to get the mania under control, first, but it seems she's decided it's as under control as it's going to be . . . so why not address the depression?

I think there may be a couple of reasons for that. One, anti-depressants can set off mania, and we don't want to make that worse. Two, her practice has been getting busier and busier; it was six weeks between the last two appointments, and now it's two months until the next one. While I'm kinda happy not to see her as soon, on the other hand I wonder if she's getting too busy. Although it could be that since she feels I'm as good as I can be on the Lamictal, she wants it to float that way for awhile, and see in two months how I am . . .

I keep reading back and seeing I say, I think she may have these reasons, or she may feel this way, etc., and I wince, because shouldn't she and I be DISCUSSING these things? Then again I AM afraid of her, and we've discussed what I've thought of to discuss in recent appointments; it's been less of her forced "Let's talk about whatever comes out of your mouth first" contrived technique.

Do I think my fear of her may be part of the reason I "forget" important stuff to talk about? Perhaps. I'm certainly not gonna be near as critical of her in appointment as I am on this blog. There's a difference between being critical and asking genuine questions that may sound as if I'm questioning her reasons for what she's prescribing and why; I can see why I might be afraid to ask her such questions, but in a good doctor/patient relationship the doctor should feel or act threatened by a patient wondering about these things. Our relationship is not a good one, however, and after typing this post which is helping me think through these issues, I wonder how harmful to my health IS this doctor/patient relationship becoming, if I can't ask her the questions I feel are necessary for the best care . . . .