Across and Inside my Universe

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.

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.

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.

Another stigmatizing board game

DeathMatch Asylum

Description of the game:

You’re a patient in a mental hospital. You awaken one morning to discover that all of the doctors and nurses are missing! This means that A) your control mechanisms are missing, and B) you’re low on medication. You do the obvious thing of course, you grab the nearest high-powered weapon and lay into your fellow inmates with a passion!

DeathMatch Asylum(tm) is a miniatures game / board game that simulates the multi-player first person shooter computer games. Play is fast-paced and humorous, and it’s a snap to learn!

I know this appeals to a juvenile male mentality, and setting seems to matter little to that demographic quite often, but this is really quite awful. This is a GAME?

Of course, I'm sure there's been bloody video games set in sanitariums and the like, but I don't think that makes it socially acceptable. The stigma associated with mental illness, especially with anything perceived to be related to "insanity", including hallucinations, etc., seems to make this seem even like a FUN setting for such a game, to some people.

If mental illness were truly seen as equal to other illnesses, well, then we'd either have people setting first person shooter games in cancer wards, or they'd set nothing violent against or by the patients there in either case.

The fact that people would be horrified if they made a game like the above, if it'd be set in a cancer ward, but not for a "mental" ward, well, it shows that we've got a long way to go in reducing and eliminating stigma for mental illnesses.

I could go on and on but here is a Geeklist on Board Game Geek.com of "insane" games; ie, they involve mental illness in some way. Some are rather offensive. Others seem to be "mad" because they are based on Mad Magazine. I haven't checked any out, just scrolled through and saw some horribly offensive ones.

http://boardgamegeek.com/geeklist/1230/item/19573#item19573