Working

This working thing just won't work much longer. In the last 2 days I worked 20 hours. I only submitted 16 of them for pay. Some of the time that's fair, I wasn't fully working, although I was discussing a matter of relevance since I'm affected sort of by some changes in my company. But most of it was just that I can't work fast enough. And then I get more and more tired, and it gets worse and worse. I was crying by the time I got home.

On top of that I have a pretty bad headache I can't get rid of. I seem to remember this being part of Lamictal before. Nonetheless it is not helping.

I'm just so glad it is weekend.

Experiment Two

I seem to be at war with myself yet again. I'm so very tired and can cry at anything, and I am extremely anxious, relying on a lot more ativan than usual. The experiment with low-dose lithium showed that it does help some. I'm not cycling as heavily as before. Instead I'm pretty much just very depressed. Unfortunately increasing the dose isn't an option.

So I'm moving on and starting Lamictal. I have been on this before, but stopped because we thought it was causing vomiting. Since we know now that I had the lithium problem with vomiting I wanted to give this one last shot.

Lamictal is associated with a rash that can actually kill you, so it has to be started unbelievably slowly. It will be 5 weeks before I'm at a bare minimum dose. I just hope that if it is going to make me vomit that it does so very quickly so I can move on.

Here goes nothing. I'm not feeling like talking about a lot of what I'm feeling, so I may not write too frequently for a while. But who knows how that goes.

I wish

Like any blogger I get some funny search terms, and there are some phrases that I'm high on the google hits for that are humorous. But today's hit was so sad: "i'm bipolar cure me".

I wish I could.

ECT, etc.

As I've been describing, I'm facing the end of the line with medications. I'm currently re-trying meds that I've not tolerated before, trying anything that might work before I have to jump off the cliff into the last few antipsychotics. Antipsychotics have never been a good experience for me, and I just don't want to try more of them.

I'm pretty sure that I'm ready to start talking about alternatives. The intention all along as been that if/when I can be stable long enough I will get a vagal nerve stimulator. The thing is that nothing makes me anything like stable anymore, making that a dream. And even then it's a dream with at best a 33% chance of success.

I'm pretty sure that when I see my doctor next I'm going to talk to her about ECT. I've seen someone do very well with ECT as a maintenance treatment, and I am willing to try. I'm so tired of meds not working for me. There are issues that would be decisive, and my doctor has never mentioned this as a possibility so for all I know it may not even be appropriate, but from what I've read I suspect I'm a good candidate. The biggest issue would be the risk of memory loss, I'm trusting my doctor on that part now.

I believe my doctor also does rTMS, but I don't know much about it and haven't seen much to make me think it's a likely treatment for me.

I'd be very interested in anyone who has had any of these treatments sharing their experiences, either in the comments or via my email.

Still can't believe I'm even thinking about this. What's more, I think I could be excited about it if it held hope. Strange.

Irony I don't want

As discussed throughout this blog, over the last 15 months lithium and I have had an interesting relationship. After much, much debate last week I decided to give it one more try because I simply had not felt good since a few days after I decided I couldn't tolerate it in December. I tried very hard to make it work then because I was afraid; it was the only constant in my years with this disorder.

It seemed to be going so well. I was a little thirsty, but not desperate. And I was feeling better. The psychologist noticed it Monday, and I was starting to feel more confident of it by yesterday.

And then, today happened. Today it was warm and humid. Nursing homes are miserably hot. By the time I had worked 2 hours I had signs of lithium toxicity. They were minor, but present. I have no idea if that's ok, if transient signs can occur since I just started it, or if that's the sign that I'll move on to the next med in the next few days. I guess I'll know soon.

So, today we have learned that it is very likely that I need lithium to feel good and yet my body simply can't handle it.

Surprise

The entire reality of my bipolar diagnosis sunk in over time. As I've mentioned before, a doctor suggested I was bipolar in December of 2000 but it wasn't something I would consider or allow to be true until July of 2002. In May of 2002 I agreed to use lithium to supplement my antidepressants to treat my severe depression. In June I began to see patterns in my moods through starting counseling, and I began tentatively reading about bipolar disorder. In July I read enough to know I was bipolar, and I was able to confirm it with my therapist, very shortly before heading off on a manic reign of terror.

Over the next several months I went through many emotional processes involving my diagnosis. I will always appreciate the honesty my doctors provided, balancing it with hope. I was given a lot of information, but never too much in those months. Actually I'm not sure there was a "too much" because I wanted to know as much as I could so I could be in control.

For a time (months) I dealt with the question of "why?". I don't think I was too hung up on "why me?" very much because I'd been in healthcare long enough to know that terrible illnesses are random. It was hard to handle the idea though that these illnesses occur, that life plans can be so easily disrupted.

The "why" questions did relent over time. I don't talk about my faith here and I won't really now, because I want this to be an open space for people who may not share my faith, but in this part of my story, faith was the answer. I knew that I had this illness because God had always planned for me to have it. I had the bizarre version that I have because that was the version God can use through me. I picked this career that does not mix well with my illness because somehow I can help them mesh. All of those things I was able to handle, although I did go through the usual grieving and anger that comes with knowing that life is not how you expected. I really struggled to believe that just because I made plans for my life doesn't mean that they are the plans God had for me. That one still gets me sometimes when I am hurting about losses that it seems "everyone" else gets: children, a social life, energy, the ability to take care of one's home and life independently, etc. Sometimes I struggle most with things that are fairly stupid, like anger that everyone else seems to move out of therapy or at least advance to less frequent visits and I keep hanging in there week after week and sometimes more than that. I am just about into my 3rd chart in nearly 5 years there. I see the psychiatrist every month without fail as well, and heaven only knows how thick that chart is.

But normally I'm at peace with this stuff most of the time. I get frustrated, but that's separate from the "I hate my life, this isn't fair", sobbing, gasping conversations I had with God 5 years ago. Those were normal and part of the grieving I needed to do when I saw that things I really wanted and that I had worked hard for would not happen. Over time I found ways that bipolar has been good and these things have taken the place of much of the hurt and anger.

Yet it seems I still am unable to comprehend that "yes, really, really bad things can happen to me". This week my doctor brought up Clozaril for the first time as something to consider for the future. Clozaril is a last resort drug, even according to the people who make it. Why? Because it can kill you. There is a decent risk of causing problems with white blood cell count, meaning that your immune system is messed up and if it's not caught quickly it isn't reversible (as I understand it). Further, there is a 3-4% chance of it causing seizures, although presumably I'm on enough Depakote to prevent all seizures forevermore. When you are on it you get weekly blood tests for a long time, then biweekly, and after a full year of tolerating it you move on to monthly testing. Not so much fun.

It's not time for me to take Clozaril yet. It's not even time to think about if it's something I want. She was letting me know it's there if I need it, that there's still hope. Because I am getting closer to the bottom of the barrel and we both know it. This lithium trial seems to be going ok, but it's a shot in the dark.

However, I have been reminded yet again that life just isn't something we can plan. I had a really lousy growing up with some really, really bad people in it. I had the mistaken idea that this meant I would be OK as an adult. When I moved past that idea and accepted that child abuse exempts me from nothing, even when I worked very hard to overcome that abuse, I thought I was being strong and accepting recurrent major depression. Then I thought I was being strong accepting that I had bipolar, especially when the Guru told me that my cycling was so rapid I would not get more than a partial response to drug cocktails of 3 mood stabilizers plus whatever other meds. I thought I understood what my life would be like, and then this last year has taught me that even my changed ideas weren't taking into consideration how powerful this disease can be.

I've known for a long time that my poor med response was an issue. I've known that it made everything harder, of course, and that it significantly lowered my prognosis. I've been angry that I can only stay well so long on any given combination of meds, and that nothing has been easy.

But somehow I can still be surprised. Because I know that if I get down my list to Clozaril and it fails then my whole life will drastically change for the worst. I trust that this won't happen, but I know too that it can, and might, and that I'll deal with it if I must.

Odd though that surprise is my greatest reaction. Because I know that my doctor knows I know precisely what mentioning Clozaril means, and she does not do such things lightly. Meaning she thinks it's good for me to have time to think about the possibility. And truthfully, right now I'm about 3 major episodes away from it being about my only shot.

So weird.

Here we go loop-dee-loo

Here we go loop-dee-loo,

Here we go loop-dee-lai

Here we go loop-dee-loo,

All on a Saturday night.

I used to have a dementia patient who sang this all the time. I suppose it is part of some song from the 1920s. My psychiatrist visit today is best summed up by this song.

First, I've spent the last 3 weeks waiting for her to call back and tell me I could increase my depakote. As I've described, I've not felt well, and I've really needed the change. I thought she was ignoring me, and then that has added to my enormous frustration with not being able to stay well enough to get from appointment to appointment without falling apart. Turns out, after a number of phone calls to various hospitals and labs, that my blood which was drawn February 13th was lost. This is especially annoying to me because the plebotomist punctured my vein and I had to waste time holding my arm in the air and getting a pressure dressing. Apparently only the paperwork went to the outsourced lab and they didn't bother to mention this to anyone. DUH! So now I have to spend Monday tracking this down because I am not paying for a test that wasn't done, nor from them drawing blood and losing it. Then Tuesday I'll have to go get another test done.

And then, the continuing painful discussion of my medication options. I am down to having 3 categories. First is drugs that might work but which the doctor wants to avoid because she is afraid they will cost me my ability to work by causing cognitive impairment at the doses I'd require (neurontin, topomax). Second is drugs I haven't tried (seroquel, zyprexa, and clozaril). Each of these has serious side effects I am afraid of, and each would require taking time off work to adjust to the medication. Third are a few meds which I have tried and stopped for adverse reactions that I am willing to try again (lamictal--we thought it caused vomiting but it could have been lithium; keppra--I just didn't like how I felt, but this was early in the search so I may be able to tolerate it given more adjustment time; and incredibly low dose lithium).

We easily narrowed it down to seroquel, lamictal, or low dose lithium. I have an innate fear of seroquel as I've seen it sedate people and cause weight gain and I've had too much of both of those. Plus taking time off to adjust is really, really inconvenient. So I made that my 3rd option. Lamictal is slower starting and a pain to start, plus I really fear it. She had a coupon for a free starter kit and I did get that script filled so I'm ready if I need it. That left me choosing my known evil.

This probably sounds crazy after all that I've been through in the last year with toxicity. But I went there knowing this was what I'd probably elect today, and I feel I need to try. I'm on even less than ever before, an amount that we won't worry about the level, just the clinical effect. I'm also on a different formulation, leaving some hope I guess that I will be less ill. But I feel most safe tackling this known entity. I know toxicity. Within a few days I'll know probably.

But it also feels like going full circle.......

Sorry I missed your call, the phone company rejected me

A certain, unnamed phone company with 3 letters and an ampersand in it's name, has been taking over everything in this region. It was bad enough when it took over my regular phone. But now....My cellular provider ever since I moved to this state doesn't have coverage in the area where I work and am most likely to be driving home in the dark. Furthermore, they made me angry with a stupid policy and rude customer service person on a day I was tired and in a bad mood.

Today my phone DIED. I've been babying it for a while. Now it is gone to heaven for good. This is not good. I need that thing as I move between multiple worksites and deal with vendors, etc. I knew what company I wanted to switch to, and finally accepted that I was going to have to pay to end my contract with the other company early.

So I went to the new place, picked out a plan and phone, and after they entered my information I was informed that they won't "accept" me as a customer because I live out of their coverage area by about 3 miles. I explained I know this, but I use it while driving and they do cover everywhere I go, just not my town because there is no coverage whatsoever in this town. It is not serviced by any towers at all.

So now I have to deal with another company that I know won't work well where I work, and which has very, very inconvenient hours.

I was just rejected by the phone company.

Interesting

When I was in college I remember psychology classes were always talking about the connection between stress and illness. Then in graduate school I took a class about holistic medicine that devoted probably 33% of the course to this topic. It was a weird class, but learning about de-stressing during the most stressful year of my life was a good thing. I actually learned techniques in that class that got me through completing a thesis while I was in the last months before the bipolar became wild. I literally completed my thesis in early May and was pretty sick (yet refusing to admit it) by early June. The significant symptoms started in March of that year.

However, I never knew how strong that connection really was. But the longer I live with bipolar, the longer I can see it. For one thing, if I am under stress that triggers cycling. But I get physically ill more than ever before, and it correlates with stress and increased cycling. This last month I have been sick nearly constantly, and I've been cycling badly and I've also just been stressed. Coincidence? I think not.

Also, I'm trying something new. I love vegetables and fruits. I eat lots of them, even for snacks. Unfortunately my diet still stinks, because I work crazy hours, I'm too tired to cook more than a few times per week, etc. So I'm always looking for really healthy snacks, or super easy meals that will last for several meals. I found recently a website called The Cleaner Plate Club which has great and easy healthy recipes and discussions about healthy mealplanning. So far from this website I've found out that my peanut butter was from the tainted batch of Peter Pan (no more Peter Pan for me), thanked God a thousand times for sharing in the purchase of an organically raised beef this year, and found several new foods I LOVE. So check out this new blog and see what you think. Maybe I can eat enough good stuff to totally counter the bad......

Here goes nothing

Time to see what happens with the time change. Very nervous about this. Hope I wake up in time. Mondays are always a tight squeeze for me because I have to be done on time to see my psychologist, so this makes this extra hard. Must sleep NOW.

I have been a therapist just over 6 years. That's enough time to have met a lot of people. Especially because I have almost always worked in places specializing in mental health or dementia I have plenty of experience in people being mean to me.

I don't expect a lot from my patients. I know they are sick and often cognitively impaired. I expect them to be minimally polite for within their cognitive status, and I expect to be treated with a minimum of respect. If I'm hurting them I will accept them saying or doing anything. I've handled some hard punches because I was hurting someone (not that I want to, sometimes I have to). That doesn't bother me. Hit if you must. Hitting out against something that is hurting you is a natural instinct. I kicked my surgeon hard in the stomach once when he was using the laser to treat my birthmark (thank God they took my shoes off first). I know this kind of thing happens.

So through all this time I have never really had a patient who I just couldn't take. I've had patients I didn't get along with. I've had patients who hurt my feelings or scared me. I had one woman who accused me of abusing her once, but I had a witness and there were many, many things wrong with her story. My company did keep me away from her more or less for my own protection, but it was just to be safe, not for any real reason. That lady had done the same thing to her daughter, resulting in a court battle for the daughter, who was found free of any wrongdoing. I've had lots of patients who didn't like me for one reason or another. Some are more aware of my bipolarishness and don't like me for it. A lot of women seem to pick that up and are offended by it somehow. Right now I still struggle sometimes with switching into an atmosphere where my patients are more capable of decision making because I sometimes am too forceful in my requests.

Today I finally found someone who I do not want to treat anymore. I just can't take her. No matter what I do she hates me. She says I am mean. That originated from my expectations that she do things like lift her own coffee cup. I tried every personality I have on for her and she wanted nothing to do with them, she wanted to not do anything and she knew I wouldn't let her. Sometimes that's the hardest thing about what I do, I want so very badly to be able to do basic things and I really resent people who refuse to try when they have no reason not to be able.

I have tried for months with this person. Today she started lying, in front of me, about how I was hurting her. I was not touching her, I was encouraging her to fix something so it was comfortable (ie move 1/4 inch), I was asking how she was, and I did ask her to squeeze my hands. I knew I wasn't going to get much when I walked into the room, but it was so bad.

And so I decided that's it. Part of my job is to supervise her treatment and I will do that, but I will not deal directly with her except on supervision days. Will not. I will not have her accuse me of harming her. I will not have her call me ugly names. I won't.

She's not doing it to other people. She's not doing it to me personally, she's doing it because she doesn't like therapy, and she doesn't like OT in particular and she knows I'm the OT supervisor and that my assistant is more easily manipulated. But I'm not taking it.

And yet this is a strange, strange feeling. I realized this evening that as a healthcare professional I let many of my self-esteem issues come out and they are enhanced. I believe that in my career my own needs come second. I believe that I owe my patients all I can give. Yet I also have trouble finding the line where I matter equally. I've got a long history of this (see last year when I worked myself nearly to death when I was so incredibly ill because I felt I couldn't abandon my patients) and maybe it's time to stop.

So, this lady? She's done. She's not going to make me look or feel bad anymore.

So there.

So much fun

I emailed the doctor again, asking for more mood stabilizers. So far I haven't heard back. But she may not have worked today, I'm not sure she does on Thursday, and I need to find that out and quit asking questions on Wednesdays if that's true. Regardless, I really need the meds. I'm all over the place and I'd not even realized the time changes in just a few days. That is good in a way because I am desperate for light, and that will let me have some more changes to get it, but it's bad because the adjustment will be really hard on my body. It always is.

Back to stalking my email account......

YAAAAAAAAAAAAAAAAARGGGGGGGGHHHHHHHHH!

I have been very, very depressed for weeks. I've been so depressed all I could do was sleep and cry and I didn't want to keep trying to fight. I felt like that when I woke up.

And then suddenly I was very manic. Enough I had to take an ativan to work, and even then I struggled and lost several hours to total nonproductivity.

Sheesh.

Cycles

One of the most often words in bipolar is "cycling". Are you cycling? How fast are you cycling? How high/low are you cycling? Personally I hate it, because it's a one dimensional word that is supposed to describe such a huge chunk of my life. I hate the linearity of it so much that I keep playdoh at my psychologist's office to make 3 dimensional models of those feelings.

Yet there are truths to the word far beyond the ups and downs. Each time I become ill I see the same things happen. I get tired and things don't get done and I get more frustrated because I'm more overwhelmed every day. Tonight, as has happened more than once before, I realized that I was so tired and so ready to get home tonight I forget I needed to go to the pharmacy for antidepressants and mood stabilizers. I had enough mood stabilizer to be ok, but I've missed the majority (90%) of my antidepressant dose of the last 2 days. Fabulous. Yet what can I expect, I'm barely managing to do anything?

Another cycle is within my reaction to other people. As this goes on I'm getting more and more irritated with anyone who wants to suggest that they know what I'm talking about when they don't. I mention taking sedatives to someone who doesn't know me at all and she's immediately telling me about her antidepressants. I start choking back the "who cares?", because that's not really what I feel, it's just that my 2250 mg of depakote, along with two other sedatives, pretty much make antidepressants look like candy. Or another day when someone at work was all upset about totally manageable things, just daily life things anyone might be upset about, but not life or death. It becomes so very hard to not want to scream when I'm in the midst of fighting to make it hour to hour.

So I suppose tomorrow I try to break at least the no meds cycle. Then we move on from there. Where that happens to be I'm just not sure....

This week is done

I can't say I even remember much of it, it was just a blur of working and getting to sleep as fast as possible. And all the sleep I've gotten hasn't mattered. Last night I added even more fun to the mix by somehow deciding an hour's intermission from sleep was a good idea. I'm doing my job and thinking "don't care, don't care, don't care", when in all truth I care so very much. Except not right now. Right now if you're not sleep you're not worth it.

Still waiting to hear from the doctor. Theme of my life. I can't image what it is like to treat someone like me, someone who not only doesn't just get better, but can't seem to manage normal amounts of times between disasters. It doesn't seem like it's asking too much to survive 4 weeks between psychiatric visits, but I'm not doing so well at that. That cannot be fun to put up with. I know that's the nature of the disease, and that it's also the nature of my variation especially, but I still feel so obnoxious.

That's about it from here. Plan to sleep lots the next 2 days.