The Trade-Off

Well, DH had a pdoc appointment and reported to the pdoc that he was getting more paranoid.  He was believing that everyone, friends, family, and just strangers in town, were judging him because he was not working.  He wasn't leaving home for any reason.  At my nephew's 6th birthday party, DH didn't speak to any adult at all, except a few words to me.  The pdoc put DH back on Seroquel.  I actually think that DH should have been on Seroquel all this time, but back when I took over setting up DH's meds, he was not taking it and hasn't been back on it since.

The pdoc said that the Seroquel would decrease the paranoia.  And it did.  And it did very good things for DH.  Instead of watching TV all day, he was suddenly cleaning, rearranging....even doing some small repairs.  It was very good. 

Then DH's pdoc called and stated that DH's Lithium level (in his bloodwork) was way too low.  He instructed DH to raise his Lithium back up to 1500mg a day--600 in the morning and 900 at night.  Immediately I saw a difference with this change, too, but I'm not sure it was a good one.  DH is a little less motivated than he was when he first started the Seroquel, but the main change that I'm noticing is that he is starting to get whiney, like he was several months ago.  He wants this, he wants that, wah wah.  And he's not satisfied with things like he was before.  I had warned him that November was going to be an exceptionally tight month financially, and still, he keeps asking me to buy things like chocolate milk, or expensive (by my budget standards, LOL) cheeses.  When I tell him there is no money for that, he gets sulky and pouty.  And keeps asking.

I'm wondering if maybe the Lithium isn't the miracle drug that it was earlier.  Then I'm wondering if maybe I'm just seeing these things more because he is not laying in bed watching TV all the time, so he has more interaction with me, thus, the opportunity to beg for more stuff.  I don't know!!!  But I would like to go to the next pdoc appointment (in 4 weeks) if I can.

Side Effects

Well, things were going comparatively well.  For a time.  DH was remembering to go to his appointments, taking his pills, cleaning the house--in fact, the house was cleaner than it's probably been in a year.    I was thinking that it might have been an ok tradeoff, if DH not working was the cause of all the new positives.  But no matter what, apparently, the phrase to remember is....."Be careful what you wish for."

I'm not complaining about the "new and improved" DH.  And I'm not saying that he's so improved that I can't stand it (we were actually at that point for a brief period, while he was manic and undiagnosed, but we aren't there now).  What I'm talking about is the fact that our budget has been cut to the bone.  I thought it was tight before, now it's unbelievable.  And DH still says he wants to find a job.  Who am I to object?  Any amount of income he could possibly bring in would help us big time, right?

So, DH has been meeting with the people from the organization that finds jobs for people with mental illness.  I'm very impressed with the fact that he hasn't missed an appointment with them.  Unfortunately, between DH's memory problems, there aren't a lot of things that they can be sure that he could handle.  But that's not the worst of it.....the lead job counselor there called DH's pdoc and told him that "DH is NEVER going to find any job anywhere, as long as his hands shake like they do.  Any employer sees that, and that'll be it." 

So now, DH's pdoc, who does not think that DH should work anyhow, but of course doesn't want to stand in his way if he needs to work or wants to work.....has been cutting back on DH's Lithium, as it is believed that the tremors are a side effect of that drug.  I've been surprised that DH is not having the mood swings yet and he hasn't had a lot of racing thoughts either.  I think DH is surprised too.  He's down to half the amount of Lithium he was on when this experiment began.

However, with every decrease in the Lithium, and I don't even know for sure that it's more than a coincidence, DH has been slipping into more lethargy again.  He sits in his chair and does nothing all day.  Nothing.  Some days he only even eats one meal--and for a guy his size, that's not a normal thing.  He just sits there.  When I ask him questions, he responds appropriately, but then an hour or two later he can't remember what we talked about at all.  It's like having an extra piece of furniture around.  And it seems to coincide with the decrease in Lithium.

DH's pdoc has also started DH on Inderol, which is a blood pressure medication that is supposed to help with the tremors.  So far, the tremors seem to have decreased, but are still very noticeable.  I'm starting to be concerned that the tremors might be a permanent thing.  That's kind of scary.  I know I'd much rather take the hand tremors any day, as opposed to how crazy things were before DH started on the Lithium.....but still....DH can't carry a bowl of soup from the microwave to the table without spilling it.  When he eats with silverware, the tremors often cause his food to fall off the fork or spoon.  And writing is nearly impossible.  I need to find out more information on what to expect.  I'm concerned.  Probably I should've been concerned a long time ago, as the tremors have been going on for a long time, but nobody else was concerned (meaning the pdoc), and I was just so happy that the Lithium was helping so much......

And now that his Lithium has been lowered so much, I'm worried about the lethargy, but also worried that "That Guy" might come back when I least expect him.  And that would really suck.

Why on earth did it take me this long to do this????

I'm sure it has a lot to do with my denial of DH's mental illness.  Part of me is still hoping that he'll wake up one day and be "normal" again, just like he (pretty much) woke up one day and wasn't any more.  Intellectually, I know it's not realistic, but......I do the same thing with my mom, but that's another post.

When my mom lived in assisted living, for nearly two years I would go to her apartment on Sunday and set up her medications for her.  She had a purple pill container for her morning pills, and a blue container for her nighttime pills.  If a doctor prescribed a pill for noontime, we always had to request that it either be in the morning or at night, because my mom could only seem to remember those two pill times.  But it worked long past the time when she could no longer read anything, because she could differentiate between the colors of the pill containers.  Every Sunday I would religiously refill her pills for her.  It helped with keeping the prescriptions filled, too, as I was right on top of things.  I remember asking DH if he wanted me to do that for him, too (at the time he wasn't on as many medications as he is now), and he got offended and said "no, I'm an adult, I can do it myself."  And that was that.

I know he hasn't been taking his pills religiously.  And recently, since he's home more, I've asked him why he hasn't taken them at certain times.  Often his response is "I forgot to fill up my pill container."  or "I forgot to call in my refills."  And you're saying to yourself right about now, "Ok, Carol, this is obvious."

But it took me this long to do it.  I just didn't ask him.  I took over.  And once I did it, he didn't mind at all.  I had expected some kind of objection, but he didn't say anything about it.  And it feels good, because it's one less excuse he has to not take his pills.  I think he hasn't taken his full regimen for weeks.  I have an idea to track everything on paper, too, as sometimes his pdoc will make a change that isn't reflected on the prescription bottle and I don't always know/remember those.  Like "Your Depakote levels are a little high, let's drop down to three pills instead of four...." and if I can't remember what the right dose is, it's almost guaranteed that DH isn't going to remember either.  So my intention is to request that the pdoc's nurse write down what they have listed as what he should be taking, and that she write down any changes made at DH's appointments and send a written "change notice" home with DH, so we are on track.

So far, the results have been promising.  DH has been in a pretty good mood yesterday and today. (I started doing his meds last weekend).  At that time I observed that he had no Effexor (antidepressant) and could not remember if or when he had requested it to be refilled.  He hadn't taken it for at least 2 weeks.  Now, a week later, he is more cooperative, more friendly, less demanding, more appreciative.  It makes things so much more pleasant and comfortable for me.  I hope the improvement isn't just a fluke.

I wonder what other changes I could make that could improve things.  I'm amazed and embarrassed that it took me so long to do this one.  But better late than never, right?

DH stable again (kind of)

Well now that DH has been officially restored to his "regular" dose of Lithium by the pdoc, things have gotten somewhat back to normal.  He's still on the higher dose of Abilify, and that seems to be helping his motivation too.  In his appointment, the pdoc said "Your case is one of the trickiest I've seen.  You are on high doses of several drugs and there aren't a lot left to try.  I've worried that as you grow older, this combination won't be as effective as it has been.  Clearly, reducing your Lithium was not a good change.  We need to hope this works, because I'm kind of at a loss here."  That was a scary thing to hear from the pdoc who (as I found out when I googled him last weekend to see what hospital to call) is a state-renowned expert.

So I'd like to report that all is well.  And surprisingly a lot of things are.  DH's paycheck this week was $91.00 (frankly, I can't believe he's actually still employed at all).  That's quite a drop from the $400 and $500 paychecks he was receiving a couple of months ago.  But compared to lean times in the past, DH has been surprisingly understanding about how little money we have.  In the past, he would be begging me to bring him out to eat, buy him pop, buy him cigarettes....and this time, he seems to have a better understanding that those are luxuries and there is no money for that.  That's been a relief for me, because before, when we were broke, and he kept begging for stuff that I couldn't buy, I always felt kind of bad for not being able to make him happy (but intellectually I recognized that there was no way I could).  So his new attitude has taken a little of the pressure off of me.

So what's the catch?  Things are great, right?

Well, some of you who've been reading this blog for a long time might have already guessed:  Last week, DH's "back went out" and he made yet another trip to the E.R., which resulted in yet another bottle of Percocet.  I'm not sure how or why, but I'm sure it's the Percocet that's responsible for DH's improved attitude.  I'm still doling out the pills, I keep the bottle in my safe and he can only have 2 or 3 pills a day, but as soon as he started taking them, once again, he was more easy-going, more ambitious and more alert.  Once again he's concerned about his blood sugar, and has started to try to take some little steps to try to lose weight. I had mentioned this to the pdoc, thinking that maybe there was something similar in the world of psychotropic meds that could bring about a permanent change without the addictive narcotic, but the pdoc was just as puzzled as I am and didn't offer suggestions. 

I know he's got a dependency problem.  And it makes me angry.  But really, things are so much better when he's taking them, I get all mixed up when I think about it.  If he's on Percocet, there's a better chance that he'll go to work, and we'll be able to pay the bills.  There's a better chance that he'll pay attention to his blood sugar, and that will enhance the quality of life for both of us.  But there's that addiction thing.  And shouldn't he be able to achieve these things without a narcotic to prop him up?  I don't know the answer.

I hate Percocet.  And once again I feel like I'm caught between a rock and a hard place.

"A realm like no other"

Just as a "postscript" to the previous post, when DH went to his Dr. appointment at 2:40 the other day....he...."felt funny" and ended up talking about back pain with the Dr. and not telling the Dr. about his mental health symptoms at all.  We had also put in a couple of emergency calls to the pdoc's nurse, who never called us back (but it's possible she was out of the office on Friday).  We really felt alone and didn't know what to do.

DH continued to become more and more unstable during the night.

While I was at work at the group home, he called me and told me he couldn't sleep.  I asked him what was going on, and he said "If it wasn't for you and my mom, I'd be dead right now."  Now there's something that kind of tends to set off the alarm bells.....but wait, there's more :-(

I asked him at that point, if he thought that maybe he should check himself into the hospital and he said he thought he could make it through the night.  A few hours later, when I had gotten home from work and was in bed, he woke me up and said "I don't know what to do, about every 15 minutes I just start crying for no reason at all and I can't stop.  And I don't know why.  And then when the crying stops, I get giggly for a while, then I start crying again.  I just wish I was dead.  I think it's time for me to check into the hospital."

I thought so too.

I asked him if he had had mood swings like this before he was on Lithium.  He said, "Carol, this is a mental health realm like no other.  I've never been so scared of my mind."  "The mood swings have never been this fast and the urges have never been this scary."

So I called the hospital that his Pdoc was affiliated with, the one that the Pdoc had wanted him to go to last month when they started "tweaking" his meds.  I told them that DH was a patient of the pdoc and was having a crisis and the pdoc had wanted him to check into that specific hospital.  They were very kind, but unfortunately all of the beds were full there, so if he was going to go to the hospital, he'd have to just check himself in and he'd be transported to wherever they had an empty bed.  DH didn't like that idea, because he was afraid things would get even more "messed up" without the pdoc that knows him.  I understood and was unsure as to what to do--I knew DH was in a real bad spot.  But since he seemed to be still able to recognize that things were bad and he needed help etc., I didn't want to just call 911 and have them take him away.  We talked about it for a long time.  I didn't get any sleep.  I looked up Lithium and Abilify and there was no big red flag "DO NOT TAKE THESE TWO DRUGS TOGETHER" or anything like that, and, since DH was already taking Lithium with his Abilify, just that the dose had been lowered significantly (by half!), and since we couldn't find a pharmacist or a doctor who would tell us for sure if it would be ok or not, as a last resort, I said "go back and take the dose of Lithium that you were taking before it got cut" (he had been on that high dose for over a year).  I hoped it was ok to do that.

All day the moods played across his face.  "That Guy" came out often, for silly reasons, like a dog licking his hand or something.  And "That Guy" would get angry with the dog.  DH usually loves the fact that the dogs and cats love him and he usually tolerates their affections much better than I do, even.  Then he would get so down that he was just paralyzed.  He couldn't get up out of his chair to smoke.  Then for a minute, he sounded fine.  Then it would change again.  I was really afraid.  I knew I had to work all night and I was very worried about leaving him.

I had to leave for work at 8pm.  At about 6pm I noticed that I wasn't seeing his expressions change like they had been.  And his eyes weren't closed.  I asked him how he was feeling, he said "I think I feel better."  By the time I left, we had conversed enough where I was confident that he was, indeed, doing better.  I don't think I've ever been so relieved.  I asked him if he thought he would be ok when I went to work and he said he would be fine.  And I believed him.  So I went to work.

At about 3am, he called me at work and told me that he had felt so much better, he had cleaned our bedroom and bathroom.  He said he was going to take his "old" bedtime dose of Lithium (the higher dose), along with his other meds, and go to bed.

So it appears, that Lithium may be a miracle drug once again.  I'm not looking forward to explaining to the pdoc that I/we changed the dose of a med without authorization, but I honestly didn't know what to do. It seems like right at this moment, anyhow, that it was the right choice. 

DH is becoming more unstable

I am seeing mood swings often.  Yesterday, DH called me at work and was in such a good mood, he was so happy to hear my voice, he was going to make me supper and clean the kitchen, and he couldn't wait until I got home.  I drove home feeling like it was a rare day when I could feel really good about my marriage--I was really happy.

Well, I got home, no supper, kitchen hasn't been touched.  I asked him what happened, and he got that cold "That Guy" voice and told me if I was going to lecture him about not doing things then he isn't going to do them (huh?)  So much for that.

But then this morning when I got up for work, DH told me that he's "having big problems".  He told me that his moods are going from happy to sad to angry in minutes for no discernible reason.  He said that yesterday he cut some firewood (yay!) and he looked at the chainsaw and had an overwhelming urge to apply the running saw to his foot.  This hugely alarmed me.  I suggested he go to his regular Dr. and ask for help, as the PDOC is 100 miles away (but comes to our town once a week).  DH also told me that thoughts of self-mutilation are popping into his head.  He says he's not suicidal and he believes he is strong enough to fend off the self-injurious urges.

I suggested that DH check himself into PDOC's hospital (as PDOC had suggested before) but DH doesn't want to let me down by possibly missing work and/or getting fired....he also is worried about the dogs needing to go out while I'm at work.  I told him neither reason was worth dying over and that we could and would cope with both.  He said he would just wait until the urges pass, as he knows his emotions will change in a minute anyhow.

I'm really worried.  I want to say "at least you were (mostly) stable when you weren't doing anything....lets go back to the old meds..." but we probably need a medical doctor to tell us that we can do that.

DH has a 2:40pm appointment today.  I hope we can find a way to help him.

DH is now down to 3 days a week

He hasn't gotten fired yet, but I know it's only a matter of time.  They've cut him down to 3 nights a week, which, after gas expenses, pretty much pays for pop and cigs and not much else.

He has another PDoc appointment on Monday, hopefully he is able to express what he feels has been happening--it seems like this could (and should) be better.

He still has no initiative at all, and his thinking is funny, lots of "all or nothing" stuff, like the dryer broke down and he says "Why does bad stuff always happen to us?" and then "We've GOT to have a dryer....." (I'm fine with a clothesline, at least until winter.....)

But I am trying to look on the bright side as much as I can--we have so much more than lots of people.  We have options.  We (both of us, amazingly, especially in this economy) have jobs....and the bills get paid.  Despite the fact that things aren't easy, we've been blessed.  And I'm trying to remember that, so that when DH says "why does it always happen to us?", I can look past that.

Well, it's official....

DH has received notice (again) that he is not eligible for disability.  Apparently somewhere in his psychiatrist's records, his psychiatrist had noted that DH was responding well to his medications.  So then when the psychiatrist later stated that DH should not work, they said that was inconsistent information.  His attorney is (once again) appealing the decision, stating that the decision does not reflect the record...but I think it's probably like the justice system, where appeals get harder and harder to win, the farther up the chain you go....

DH was upset, and did a little of the "I'm a worthless piece of ****"....but really, after 1 day of that, he was back to his "normal" self again.   I think the fact that it took so long had already prepared him for the fact that he wasn't going to get it....so I guess it was easier for him to handle.

Me?  Yeah, I'm disappointed.  That money would've helped so much.  And hoping that something like that will happen and solve a lot of problems, well, that hope is something, too.  But I guess it's all going to have to be done the old fashioned way.....rats!

Bipolar and TBI

DH consistently refers to his Bipolar Disorder as a "Brain Injury", mostly because the psychiatrist, when DH was hospitalized in 2006/07 did a CT scan and found abnormalities (click here for more on that).  And, of course, a "Brain Injury" carries less stigma than a "Mental Illness".  I was searching Google to see if there really was any way that a TBI (traumatic brain injury) could manifest as a mental illness, and I found this extremely interesting article on braininjury.com:

''BRAIN INJURY AND
NEUROPSYCHIATRIC PROBLEMS
There is substantial psychological and neuro-behavioral evidence available to support the fact that traumatic brain injury (TBI) is a risk factor for subsequent psychiatric disorders. In the Journal of Brain Injury (van Reekum R, 1996). The study revealed high rates for post-TBI patients of major depression, bipolar affective disorder, generalized anxiety disorder, borderline and avoidant personality disorders....."

(Click here to read the rest of this article)

Anyhow, this kind of blew me away, so I figured I'd post a link to the full article for all of you!

Disability--an option I thought was "done for"....

DH got a letter from his disability attorney(s) stating that his court date is Feb. 22.  I made him call the attorney because they were not aware that he was working.  When DH told them about his job, they did not seem concerned.  They asked him how many hours he works and "It's part-time, right?" (of course).  Then they asked him if he thought that his psychiatrist would sign a paper stating that DH cannot work full time.  (Of course he will, because all this time the psychiatrist has been telling DH that he should not be working at all, not even part time [but me getting laid off last year made him feel like he needed to work and I am glad most of the time]).

The thing is, I have never heard of anyone getting disability and working....?  I guess I knew that he could work a day or two, but I didn't know that he might still qualify for something--don't worry, my hopes aren't up....I'm not convinced that DH gave them all the right information.  But I've been thinking about it anyhow....wouldn't that be nice??!!

My mom seems to be mentally a little more stable.  There's currently no "weirdness", and we can talk about the weather and what she had for supper, etc...so in that sense, things have "stabilized".  However, she's still not eating much and yesterday she "didn't feel good" to the point where she slept ALL day and the aides couldn't get her to wake up to take her pills or change into her nightgown.  When I visited, I couldn't get her to wake up either.  The nurses were concerned about this and also that my mom has been emitting a "foul" odor, kind of like really bad diarrhea, but she is clean and things seem to be functioning in that department.  I've never heard of that before, either, so I'm worrying about what's going on inside her.

And to make things even more uplifting where my mom is concerned, well, in the last year or so, when I've been visiting every day, I've gotten to know a lot of the residents.  And over the weekend this past weekend, two long-time residents passed away, and that made me sad.  I know it's a part of life but I'm sad for their families and missing them (the residents) myself.  Sometimes I wonder, because I'm so very fond of some of the residents there, if/when something happens to my mom, whether I would keep going back to visit....and my answer changes every day. 

My mom--a Thank God update.

The last few days have brought very hopeful changes to my mom's status. She has started to be completely aware of what is going on, although she is still paranoid ("The people in the hall get together and talk about how they don't want to help me.", but she is now remembering what she had for supper, she's going to activities, and holding a conversation with me. Yayyy!!!!

But that's not all.

First: a case of really bad timing.
On Tuesday, when I brought DD to her psychiatrist, I mentioned that some of the tantrums and other behaviors we have been seeing might be due to the situation with my mom. I explained to the psychiatrist what was happening, and she handed me a brochure. Seems that the town 20 miles away recently acquired a geriatric psychiatrist, as well as a geriatric behavioral unit at their hospital--I called them as soon as I got home, as I was thinking that I could get Mom in to talk to the pdoc and we can really start figuring things out and trying to prevent this from happening in the future. It turns out, though, that the pdoc believes that in order to understand the complex subtleties of a person's dementia, he needs to have them observed (in the behavioral unit) for probably 10-14 days. Which is probably a really good thing. It sounds like they are extremely thorough and very attuned.
But for my mom, who has just started to recover from this past month, I don't think it's a good idea. I just can't think about putting her in another "new" environment right now. I sure wish that I had known about this place and this doctor a month ago, though, things might be a whole lot different right now. But all is not lost, because I will now be aware of that resource if I/we need to go that route again.

And now, the very best news of the week.....
They saw enough improvement in my mom to merit bringing her down to her apartment to see how she would be able to manage. She was able to do all the physical things--get up from a chair, lay down in bed, get out of bed, walk to the dining hall, etc. But she couldn't remember where anything was in her apartment. She couldn't recognize the kitchen when she was standing in it. But, based on earlier this year, I kind of expected this. I wasn't sure, though, what it meant.

But then today, we got the word. The nurses from the assisted living apartments did some kind of test on my mom to see if they could meet her needs in assisted living, and THEY COULD!!!!! MY MOM IS GOING BACK TO HER APARTMENT!!!!!!!!! CAN YOU BELIEVE IT??????? Thanks everyone so much for your prayers, they must've helped!!!!

She'll be going back sometime next week, I believe. And I and DH will have to be there with her until she's acclimated again....but that's nothing compared to what I thought we were going to go through.....oh, breathe, Carol, breathe....miracle? Probably....

Bipolar Abilify X2 (or 3)

Well, we went to see the PDOC and told him about how at first DH was almost manic, doing all sorts of things, then he started having more mood swings, and then how he just started sitting around again.

The PDOC decided that DH wasn't on enough Abilify (5 mg) so he decided to double the dose to 10mg. He said that after 2 weeks, if DH still wasn't doing "wonderful", then he should go up to 15mg. I'm a little skeptical, but this PDOC seems to know his stuff, so I'll trust him, I guess....

Then I went to the pharmacy to pick up the Abilify. YIKES. Cash price-$545.00 <--not a typo!!!!!

With the insurance copay, a month's supply cost $75. The last time I went to pick up medications at the pharmacy, it was $245.00, and that wasn't for the whole month. I've worked so hard to get the price of his meds down. When my health insurance changed the way they do copays, DH's meds were going to be about $900/month, but now we've got them "down" to $245(!). I have no idea where that extra $75 is going to come from. All I can do is keep telling myself that if DH gets better, maybe he'll get a job, or get on disability or something, and the benefits (pay) will outweigh the costs.

I can only hope!

Double Bipolar

Well, yesterday was DD's therapist appointment. We talked about the usual problems she has with her peers (an ongoing saga) and we talked about her bio mom, too. (I go to every therapy session, because I can explain the stuff that happens at home from a grown-up viewpoint, and also because it's as close to real "therapy" as I get.)

Nothing shocking there. So then we had an appointment with DD's pdoc. I started talking about the meltdown she had three weeks (or so) ago. We talked about the extra-nasty defiance we've been seeing for the last few months; "It's 9:00, time for bed!" "I'll go to bed in a little while." "No, it's bedtime. You need to put your stuff away, it'll be there in the morning." "I'M NOT GOING TO BED. MAKE ME!" etc.

To me it was just more of DD's "issues". I figured that we were just seeing a "more assertive" version of the issues because she's 15 now. And I don't know a lot of people who didn't sass back to their parents when they were 15. Or try to get away with breaking the rules. But the first thing the pdoc says after we talked about all this was, "Has she ever been diagnosed as bipolar?" Um, no.

Well, now she has been. She's been on Lamictal (100mg) for about two years now, because of her angry outbursts. I have known that was a bipolar drug, but it had been prescribed to DD in order to "stabilize her moods." Oh crap. You know, the more I try to explain to you that I had no idea she could be bipolar, and that they really weren't prescribing her Lamictal for bipolar-TYPE symptoms, well, I basically end up looking pretty foolish, because that's exactly what I should've seen, but didn't. So I'm shocked, but apparently, when I review all the things I knew beforehand, well, I guess I couldn't see the bipolar for the symptoms (or the forest for the trees!)

Anyhow, they doubled her Lamictal dose, and the pdoc is confident that we'll see some very nice changes in the next few weeks. I hope so, but really, I'm not all that confident that it's really bipolar.

Or is it that I just don't want it to be?

I enjoyed my weekend immensely.

I ended up having the weekend to myself. It was so invigorating, I really started to feel like myself again, and that light at the end of the tunnel, well, it was a lot clearer, especially when I got 8 hours of sleep and no drama!

And then yesterday, DH had his psychiatrist appointment, as soon as he got back from his mom's house. We learned that his Lithium level was only 0.6 and they try to aim for 1.0 (? I could be wrong as to where the decimal point falls, so please let me know if I am and I will change that). Anyhow, it was relatively low, considering how much he had been taking (1500 a day). So the psychiatrist said, "Well, you're a pretty big guy, let's try 300 more and see what happens."

It is very possible that this could be a source of some or all of the instability that has been happening lately. This morning when DH got up, after his first extra dose, he seemed more alert than he had recently. I don't know if it's too early to start seeing results, but I do know that I saw results within the first two days when he first started on the Lithium, so I don't think I'm too far out there if I am hoping that I'm seeing improvement!

Bipolar reality

Well, this past week has been a chore, to say the least! In between the nearly constant arguments about me "treating DH like a child" regarding the Percocet, I've also had to deal with more instability.

DH called his mom to set up plans to go to her house to finish the work he didn't finish last time (because he was in the hospital) and the time before (when he just didn't get anything done). His mom told him he needed to bring the truck (over $100 gas money one way, and I don't have that). He said he didn't have any money and she told it like it is. Probably she shouldn't have, but she only spoke the truth: "You are costing me a fortune. I can't afford this. I've paid for you to come for two long weekends and so far all I've done is buy you pop and cigarettes, pay for your prescriptions (that they gave him in the hospital) and feed you. And that's not counting the gas money."

I'd like to say I'm shocked, but really, that's how I feel a lot of the time, too, I just don't say it, because I know what happens when I do: Instead of saying, "you know, I've really got to get my **** in gear, all I've been doing is sitting around.", he says, "I'm such a burden. All I do is make people broke. I'm a piece of shit. You'd all be better off without me." I know how it goes, because every time I bring up the money he "needs" for things that I don't see as "needs", he says the same thing. This time it was a little bit worse, though, because it was his mom, not me, and she had never said anything like this before. He's been having a pity party for the last three days. His mom finally said she'd wire him the money, and he refused it. So then he declared himself to be a piece of shit because his mom needs his help and he refused her money. I ask him "Do you feel like hurting yourself?" "A little."
But he won't do anything about it. I think we really need some medication tweaking.
He was doing so good there for a while, when we found Lithium, I'm really disappointed that we're back into all the drama and self-pity again.....and the Percocet, too. And this time seems so much harder for me to handle in a nice way. I'm biting my tongue more. I'm finding myself making sarcastic remarks under my breath. I'm really frustrated. Supposedly, if he goes, he has an appointment with the psychiatrist in early November. I'm crossing my fingers for that. I don't know what else to do!

I think I'm going to be sick.

There is just no end to this bad week. Silly me for thinking that was all there was....

After DH got home last night, he called to tell me that he was home, everything was ok, and DD was in bed. He told me that he was going to have to go back up there to finish the work he had started but not finished, and that his mom had given him gas money (it costs about $130 in gas for him to get there in the truck and I don't have that kind of money). I was relieved, both because I wasn't expected to come up with the cash, and because DH was leaving again. It's kind of funny, I love him so much, but things really run so much smoother when he's not there....

Anyhow, about a half hour later, he called me again. I got a red flag alert right away--he had that sound in his voice--I've called it "triumphant"--like he's just conquered the world. I don't know how else to describe it, it's not the words he uses at all, but his voice changes....anyhow, there's only one thing that particular voice has ever signified: spending.

Hoping I was wrong, and still hoping against hope that he was still at home (but doubting it due to what I had heard in his voice), I asked him "Where are you going?" "Well, I forgot the key to our bedroom at my mom's, so I can't get into the bedroom." "So I thought I'd go to the casino and spend $20 while I wait for you to get home from work. I'm on my way right now." (remember we lock our bedroom door because DD had stolen from us years ago...). BIG RED FLAG BIG. BIG.

And I told him so. I said, "you've got that spending sound in your voice again." "I don't think it's a good idea." "You can't afford to be throwing away money at the casino." "Why don't you go home and just doze on the couch until I get home?"

He said, "It's only $20."

Me: "I'm afraid that won't be the case."

DH: "Well, I can't spend any of that other money, my mom gave me that especially for gas. There's no way I could spend her money like that."

Me: (Thinking about when his mom had given him $1200 for the bankruptcy, and he spent it all, after saying the exact same thing to me when I suggested that I hold on to it) "Are you aware that we've had this exact same conversation before? More than once?"

I didn't want to bring up the $1200 that he had spent, because I figured it would just make him mad and he would feel like I was bringing up "past sins", so I didn't.

DH: "We have?"

DH: "Well, don't worry, I know without a doubt that I am only spending $20."

When I left work at 4am, I called our house, and DH was not there. I was so angry. But then I somehow convinced myself that maybe he had won a bunch of money....and I let it go at that.

Then today, he was intermittently losing his temper with DD for no good reason...

I called him from work and his voice had that thick sound, like he was talking in slow motion. He said he was "thinking". He sounded very depressed. I asked him how much of his mom's money he had spent at the casino.

"Every penny," he said. "Every single cent."

There are so many emotions going through me right now. I'm angry as all get out. I'm so sad I want to cry. I am thinking maybe this is all hopeless, maybe I'm wasting my time after all. I feel sorry for him, because in retrospect he told me that he should have listened to me. And I'm terrified that he's losing control. I'm scared that things are going to be so much worse by November when he finally gets to see the psychiatrist. Dear Lord. I'm so scared.

The truth comes out

In the last week or so, I've seen "That Guy" make brief appearances several times. He left very quickly (thank goodness), though, and DH was sorry afterwards. One day, DD was just being herself and doing a normal kid thing, she wanted to have a friend overnight. We told her no, I had to work, and DH was going to a meeting (Emotions Anonymous), and since nobody would be home to supervise, we suggested next weekend instead. DD handled it well, but then a few hours later she started with "how about if my friend comes over and we just stay in my room all the time?" "How about if you call my friend's parents up and ask them if I can go over there for a couple of hours then she can come over to our house later?" And "That Guy" came out and instead of just saying "No, it's already been settled, sorry." This cold voice came out and started berating her for arguing and for not considering other people, and "yes, we'll just call your friend's parents up, and then we'll have Mom stay home from work, and I'll cancel my meeting, and then you'll stop arguing, right?" and DD looked a little shocked, and started to defend herself, and that made things worse. DH said, "I need to drive into town." I asked him if he had his Lorazepam (remember he takes that to fend off mood swings and panic attacks). He said it was in his car. I said, "You probably want to use it."

He came home about a half hour later. I was fuming at That Guy and very worried too.

He said, "I need to ask you something. Did I overreact?"

I said, as kindly as I could, "Yes, I think you probably did."

Anyhow, that led to a conversation where I asked him if he had been taking all of his meds like he was supposed to. He couldn't lie to me, and he told me that no, he had stopped taking the Seroquel. I asked him about the Lithium, and he swears he has not missed that except for the time or times when he forgot to take it, he didn't on purpose miss any of that. I hope that after our talk, he sees that he really does still need these pills. There will be more discussions, for sure, if I keep seeing changes. He has an appointment with the Psychiatrist in November. He talked with his nurse practitioner who usually prescribes his meds and she said that there were a lot of things going on right now (migraines, mood swings, etc) and she wanted to wait until the psychiatrist sees him to change anything....

So that's the news....

Top 10 Mental Illness Myths

From PsychCentral:
(Click here to view the original story)

Top 10 Myths of Mental Illness
by John M. Grohol, Psy.D.
June 13, 2008

We’ve probably all seen the top 10 myths of health (like that we need 8 glasses of water per day or that we only use 10% of our brain). So that got me to thinking… What are the top 10 myths of mental illness and mental health? I compiled some of my favorites below.

1. Mental illness is just like a medical disease.

While many advocacy organizations and pharmaceutical companies try to imply that mental illness is just a “brain disease,” the truth is that scientists still don’t know what causes mental illness. Furthermore, of the hundreds of research studies done on the brain and the brain’s neurochemistry, not a single one has implicated a single source or cause of any mental disorder. In other words, it’s far more complicated than you know.

Many mental health experts believe in the “bio-psycho-social” model of mental disorders. That is, there are multiple, connected components of most people’s mental illness that include three distinct, yet connected, spheres: (1) the biological and our genetics; (2) the psychological and our personalities; and (3) the social and our environment. All three seem to play an important role in most people’s development of a mental disorder.

2. Medications are the only treatment you need to treat a mental illness.

Psychiatric medications have been prescribed for decades and are generally proven safe and effective in the treatment of most common mental disorders. However, medications are rarely the treatment option that most people should stop at. While taking a pill a day is the easiest treatment option, a pill can only do so much. That’s because mental illness is not like any ordinal medical disease (see Myth #1).

Other treatments — like support groups, psychotherapy, self-help books, etc. – should always be considered by virtually everyone diagnosed with a mental illness. Medications are often the first thing offered, but are best seen as a way to help get a person jump-started in their treatment efforts.

3. If a medication or psychotherapy doesn’t work, that means your situation is hopeless.

Psychiatric medications are a hit-or-miss proposition. For instance, there are over a dozen different antidepressant medications a doctor can prescribe, and the doctor has no idea which one is going to work best for you. So virtually all psychiatric medications are prescribed on a trial-and-error basis – “We’ll see how you do on this, and if need be either increase the dose or switch to a different medication.” Reasons for switching or changing the dose usually include intolerable side effects for the patient, or the medication simply isn’t offering any therapeutic relief.

Just as one may need to try a number of different medications before finding the one that fits “just right,” one may also need to try a number of different therapists before finding one that they feel comfortable and productive with for psychotherapy. There is no “best” way to do this, other than to take therapists through a trial-and-error process too, trying them out one at a time for a few sessions until you find one that you seem to have a positive relationship with.

4. Therapists don’t care about you – they only pretend to care because you pay them.

This is a thought that goes through many people’s head, whether they’re just starting therapy for the first time or they’ve been in therapy for years. The psychotherapy relationship is an odd one, not quite replicated anywhere else in society. It is a professional relationship that will be emotionally intimate, a characteristic most people don’t have much experience with.

The vast majority of therapists, however, don’t go into the psychotherapy profession for the money (because it is one of the poorest paying professions one can be in). Most therapists get into the profession much for the same reason as most doctors or teachers do – they see it as a calling: “People are in need of help and I can help them.” Although it may not seem like that when you’re on the other side of the couch, most psychotherapists do therapy because they genuinely enjoy helping others work through life’s tough problems.

5. If it isn’t serious, it can’t hurt you.

Some people believe that mental illness is really just about “crazy people” — you know, people with schizophrenia who hear voices all the time. But it’s not; mental disorders encompass a wide range of problems in life, including being depressed for no reason for weeks at a time (depression) or being unable to concentrate on any single task for more than a few minutes at a time (ADHD).

A mental disorder doesn’t have to be life-threatening or make you unemployed and homeless in order to have a serious impact on your life. Even mild depression, left untreated for years, can turn into a chronic condition that significantly could impact your quality of life and your relationships.

6. Psychology and psychiatry aren’t “real sciences.” They’re supported only by fuzzy research and contradictory findings.


Research into mental illness tries to understand where it comes from and what treatments are most effective in helping people cope. Psychological research dates back more than a century, starting around the same time that modern research began in medicine and our better understanding the human body. Its rich history and scientific methods are far more complex than the simple, popular image of Sigmund Freud sitting in his office listening to patients as they lie on a couch.

Some who argue this point come from different scientific backgrounds and use different yardsticks from those fields to try and “measure” psychology, psychiatry and the neurosciences by. Unfortunately, that’s like comparing apples to oranges and then coming away upset that because they taste so different from one another, these two couldn’t possibly both be fruits. Psychology and its related sciences are indeed “real science,” using well-accepted scientific methods and methodologies that have been time-tested and that produce real, verifiable, and actionable results.

7. Mental illness is a myth, based upon arbitrary societal definitions designed only to sell you drugs or psychotherapy.

This is one of the most difficult myths to challenge because there is some truth to it. Much of how we define mental illness today is based upon definitions we humans created while observing sets of symptoms that seemed to cluster together when people presented with certain concerns. People’s suffering is no myth, but arriving at how we understand that suffering and then helping the person through it is open to a wide range of interpretations and options.

The most common method in science is to identify similar groupings of symptoms, give them a label, and then discover what kinds of interventions work best in helping a person feel relieved of those symptoms. Some of this is steeped in rigorous scientific method, but some of it feels (and perhaps is) more arbitrary and political. Mental illness is no myth, but some of our definitions could be a lot better and more discrete. And, for the record, defining mental illness came long before the practical, modern profession of psychotherapy and pharmaceutical companies.

8. Children can’t have serious mental disorders.

There is a whole category in the official diagnostic manual of mental disorders for children’s mental disorders, some of which are well-known, diagnosed, and treated, such as attention deficit disorder (ADHD) and autism. But in the past decade or so, some researchers and professionals are suggesting that many adult mental disorders are also possibly found (and perhaps even widespread) in children.

The jury is still out whether it’s legitimate to diagnose a 3- or 4-year old child with adult bipolar disorder (how one discriminates mood swings typical of normal childhood at this age versus a disorder is beyond me), but it’s a possibility. The debate centers around scientifically distinguishing expected, normal childhood behaviors (even when they span a wide continuum) from serious adult-like mental disorders that need their own specific treatment plan. More research is needed before a conclusion can be made.

9. Doctor/patient confidentiality is absolute and always protected.

Just as in a lawyer/client relationship, confidentiality between a doctor and his or her patient, or a therapist and his or her client, is not absolute. While it is a legally protected relationship much like a lawyer/client relationship, there are times when in most states a therapist can be compelled by a court to testify about something said in session or about a client’s background. These exceptions are extremely limited, however, to specific circumstances, usually involving the health or safety of a child.

There are other times when a therapist may need to violate the confidentiality of a relationship as well. Most therapists go through these circumstances with their clients at the start of the therapy relationship. Instances of such disclosures might include if the client is in imminent harm to themselves or others, or if the therapist becomes aware of child or elder abuse. Outside of these exceptions, however, confidentiality is always maintained by a professional.

10. Mental illness is no longer stigmatized in society.

I wish this were a myth, but sadly, it is not yet. Mental illness in most societies throughout the world is still badly stigmatized and looked down upon. In some societies, even admitting to a possible mental health concern can make you ostracized from your family, coworkers, and the rest of society.

In the U.S., we’ve come a long way in the past two decades with significantly more research, and increased understanding and acceptance of mental illness. While still not as accepted as having a common medical condition like diabetes, most people view common mental illnesses such as depression or ADHD as just another one of those concerns of modern life. Someday, I hope this is true in the rest of the world as well.

FINALLY....LITHIUM!!!!!!!!!!

Ok, well, maybe I have some strong feelings about this, LOL. Today, DH went to see his nurse practitioner that prescribes his meds. And today she was joined by a real psychiatrist from out of town via webcam (really cool). DH was equipped with a lengthy letter from me describing all the ups and downs just like I've described them here for you. All the hope, all the depression, the spending, the anger, the back pain, all of it was in there. And I wrote it in a way that only said what had happened, not how I thought or felt about it, just my observations was all.

DH reported the following:
The psychiatrist feels that all the people who have thought that DH's problem was mainly depressive, with "a little bipolar" (that's what his therapist says)....and the hospital last year, and all the people since them (ok, the psychiatrist didn't say anything about all the other people, that was my thought, LOL)....well, he believes that DH has full-fledged bipolar and it is severely uncontrolled. And that perhaps some of his current meds are contributing to the problem, because they have tended to focus on the depression and not recognize the mood swings as much as they should have.

Ok. Well, duh, I have been telling them that since the very first time that DH saw a Dr. about his depression, way before all the spending, way before all the stuff I'm having such a tough time handling.....all the "experts", when I brought it up, tended to discount my ideas, because he didn't have full-fledged mania, where he believed that Jesus was sending messages via CB radio or whatever. I got the idea that basically, even though I went to Google, typed in all of his symptoms and always came up with "Bipolar", that I was one of those "know-it-alls" who do too much thinking and that I should leave it to the people who know what they're talking about. So I did. After all, I don't know anything about bipolar, really, and if the therapist says he's "only a little bipolar", well, who am I to quibble?????

But I'm not at all bitter at having spent the last year and a half trying to get DH better without them treating him adequately for the main problem, am I?

So they have finally put him on Lithium. Finally. When DH first started taking Prozac, it was for mood swings. So was the Lamictal (that was for the "little bit of bipolar"). The things I have been reading about Lithium give me some superb hope that maybe this was the answer all along. I'm angry that it took this long. But I did read that it takes the average bipolar patient 18 months to get the correct diagnosis....I guess we're right on schedule, right?

Yay us....the psychiatrist says we should know in a week if the Lithium is helping, and he is going to see DH again in 2 weeks to evaluate.

After reading on WebMD about Lithium, I'm really excited. And kind of afraid to be excited. And kind of mad. And kind of relieved. And a little hopeful. And kind of feeling a little foolish, too, for leaving things to the "experts".

What a jumble of feelings I have about all of this.

House to Vote on Mental Health Parity Bill

Please call your representative and urge them to vote for this bill.
I strongly believe that DH would have been hospitalized longer, if it wasn't for his insurance. The psychiatrist in the hospital begged the insurance company to allow DH to stay, but they refused, so he came home. I believe that much of the pain we endured this past year could have been avoided if he had been able to stay long enough for the hospital to determine that his mental illness was "stable".

House To Vote On Mental Health Parity Bill

WASHINGTON (AP) ― The House is scheduled to vote Wednesday on mental health parity legislation named for the late Sen. Paul Wellstone that would require equal health insurance coverage for mental and physical illnesses when policies cover both.

"I cannot emphasize enough how historic this vote will be," said Wellstone's son, David Wellstone, in a letter to activists. "For five years, I have heard promise after promise that Congress will pass mental health parity legislation in my father's honor."

Paul Wellstone, a Minnesota Democrat who championed mental health parity for years, was killed in a plane crash in 2002. David Wellstone is urging people to contact House members on the eve of the vote Tuesday to rally support for the bill, called the "The Paul Wellstone Mental Health and Addiction Equity Act."

In 1996, Paul Wellstone and Sen. Pete Domenici, R-N.M., won passage of a law banning plans that offer mental health coverage from setting lower annual and lifetime spending limits for mental treatments than for physical ailments.

The House legislation -- and a mental health parity bill that the Senate passed last year -- build on that by adding things like co-payments, deductibles and treatment limitations, a longtime goal of Wellstone's. But David Wellstone calls the House bill stronger.

The House bill is sponsored by Reps. Patrick Kennedy, D-R.I., who has battled depression, alcoholism and drug abuse, and Jim Ramstad, R-Minn., a recovering alcoholic. Ramstad plans to retire at the end of the year, but has said he wants to see the bill passed before he goes.

David Wellstone said he'll be in Washington next week to lobby for the bill.