Why we can't beat stigma

If you are treated for cancer and are in remission, people aren't going to tell you that you never had cancer in the first place. Well, I suppose some people might, but most people won't.

But if you had a mental illness, were treated (or not), and it is in remission, a lot of people are going to tell you that.

If you are doing well because you are currently managing your illness with meds, therapy, or other means, then they'll tell you that you didn't have a very bad case. The more we succeed, the more people deny our illness, rather than embrace the possibility of recovery.

This makes it all too hard to change the stigma of serious mental illness.

Drug companies would have you think that the biggest problem with stigma is that it stops people from seeking treatment. I think the biggest problem with stigma is the number of people with serious mental illness who are not working. When I went back to work, I had to change fields, and be very creative in accounting for time in order to camouflage my years on disability when I was so out of control.

Would you rather tell your boss that you are calling out sick because of a migraine or because the voices in your head are too loud today? That you have the stomach flu and can't stop throwing up or are too depressed to stop crying? I'm still trying to figure out what to say on those days.

Summer's end, I can't believe it

It is Labor Day weekend, the unofficial end of summer. I can't believe it. I am a little bit worried, because my moods are very seasonal, and I tend to get very depressed in the fall. Light therapy helps a lot, but it can still happen. Well, at least I am unlikely to get manic this time of year.

Before I figured out the light thing and started doing light therapy, I had a string of years in which every fall whatever antidepressant I was taking would stop working and by December I was in the hospital. I remember mentioning the pattern to a psychotherapist who tried to convince me that I found the holidays stressful. This was a long time ago, before everyone knew about SAD and light boxes. It was all still new.

So I have started my light therapy already. One psychiatrist told me that, as long as I am not getting manic, there is really no reason for me to stop- I should do it year round. But then this year I did get manic in the spring, so I don't know.

There are too many unknowns in psychiatry. Too many variables. I keep thinking that they should be able to design a computer program in which you enter your age, history, and symptoms, and it can tell you which antidepressant you ought to try first. Last year, when I was really depressed, and thinking of changing antidepressants, I was trying to find research on comparative effectiveness, and there is basically none (well, every little). Almost all of the guidelines and advice say that they all are basically the same, so start with an SSRI because it has fewer side effects. Really? Is that the best you can do?

We went with adding lithium, and that worked. I didn't want to do it, but as he was the second psychiatrist to suggest it I thought maybe I should really give it another try. And lithium the second time round has been a much better drug, because I am on a lower dose.

I actually have plans for a meetup group on Saturday, and Sunday I will help my dad to extract honey- if he has enough to extract. He doesn't know yet- he is going up on the weekend to his bees. Monday I am hoping to swimming in the pool in their development if the weather is nice enough. I didn't go all summer- it is my last chance.

I found my people

I went to a sci fi book club last night for the first time. It was a far drive, and late on a week night, but I am glad I went. I felt so at ease- these are my people!

I love sci fi, and there aren't a lot of us who do. No, I don't watch reality TV. I'd rather be reading.

It was an accomplishment for me to get myself there. It has really been over 5 years since I was doing anything beyond dragging myself to work, because I was too depressed, etc. Things that didn't seem possible in the past now seem possible. It is not that I don't have to push myself to do things- I do. But it is different.

But tonight I didn't go to the support group I have been wanting to go to. I gave in to being very tired after my late day at work, and came home. I just felt too tired. The truth is, I haven't always enjoyed the support group- there was a much better one when I lived in the city. But I do think I need support and social connections.

Where is the next good fight?

I got home from work early, and was able to watch Obama talking at the 50th anniversary of Martin Luther King's Dream Speech. I am too young to have lived during the civil rights era. Too young to have lived during that struggle.

But tearing down is always harder than building up. And while the laws dictating discrimination could be torn down, building up a class of people that had been repressed since the birth of this nation has not gone as well. There is a lot in King's speech that has not been achieved, but it is a lot less clear how to get there.

Still, King's achievement, and the achievement of those who followed him, was very impressive. It took South Africa a lot longer to get there. And I wonder where the next good fight is- what cause could I throw myself behind? Will my generation ever have a chance to do something so great?

I have marched on Washington DC for a pro-choice march. But I have to admit, my fervor doesn't come near to the opponents of choice. And not surprisingly, we are losing ground. I have written a lot of letters to members of congress and occasionally the president on various issues. But let's face it- I am not a player. I do these things to make myself feel like my voice matters, the same way I vote- pretending that my vote matters in a nation of hundreds of millions of people.

Local politics is where it is at if you want a voice. Otherwise, there are just too many people in this world if you are an ordinary person. King was not ordinary. He was one of the few who could change the world.

I once thought that the issue of my generation would be the environment. But the problems and solutions are too complex, and require too many nations to act. It is not going to happen, not with the decisiveness and moral certainty of the civil rights era. And not with the same victory. At least not in my lifetime.

There are no words

I have seen some images of the people gassed in Syria. It is just horrible.Why it should be more horrible to see these people dead, with no bullet holes or knife wounds, than if they were wounded- I don't know why, but somehow it is more horrible. Perhaps in my mind I imagine that a bullet could miss you, you could hide, etc. With gas, there is no hiding, no survivors. Neither skill nor luck will save you if you don't have a gas mask on. And these bodies are not sleeping.

I am constantly amazed at the ability of human beings to treat each other badly. I work in healthcare. I am a healer. Even when I was manic, I was angry and violent towards things- but never violent towards people. I still had that part of me intact.

I can't even watch boxing, now that I have treated so many patients with brain injuries. It hurts just to watch it, knowing what could be happening to the brain.

But what do we do about Syria? I have no clue. I am so glad not to be the president. Who would want that job?

Letting the regime use chemical weapons against civilians and get away with it sets a really bad precedent. And yet, who are we to interfere? Can we really fix the situation?

In today's world, I think that wars can no longer be won because the world community will no longer tolerate the level of violence it takes to win a war. It takes a lot of violence to win a war, especially to do so decisively, so it doesn't drag on into civil war for decades.

Imagine if, when America declared independence and skirmishes first started, the UN existed. They would have jumped in, put in UN observers, and told us to stop fighting and to agree to a brokered treaty for free elections on limited self-rule, with UN peacekeeping troops to keep the peace. We would have become another Ireland.

The only good thing about violence is when it can resolve something, one way or another. The Civil War- ended, and we remained 1 country with all slaves freed. That takes decisive violence. Increasingly, we just see this sustained, simmering, low-level violence that does not decide anything, just keeps the issue from going away. And the violence doesn't go away.

I'm sure that whatever we do, it isn't going to be decisive. It isn't going to be the kind of violence that ends violence. At best, it will perhaps end the gas attacks, at least for a while. But there are other ways to kill people, and the regime will continue to use them.

Feeling like I need to justify myself- to who?

I take a lot of psych meds. Effexor, Zyprexa, Lithiuim, Provigil, Zonegran, and Ambien. And the occasional Klonopin, but very rarely these days. And I feel defensive about it- which is a separate concern from my concerns about medication.

My mother thinks I should not be taking psych meds- I need nutritional healing, spiritual healing, or something else. I am not really mentally ill. My step mother, who is a clinical psychologist and used to be very pro-med, has recently become anti-med, and thinks I am taking too many meds. And when I go to a new doctor, sometimes they tell me I am taking a lot of meds. When I am doing badly, people tell me that the meds aren't working, so I shouldn't be taking them. When I am doing well, they tell me that I am not really that bipolar, I don't need all of these meds.

It is also the imagined and sometimes real disapproval of people I meet who generally disaprove of psychiatric medication. It is things I read from people in the "antipsychiatry" movement, or into natural healing.

I do believe in alternative medicine. I take more supplements than meds. But for me, it has not been enough. Before I ever took my first medication, my mother took me to a nutritional healer, and I went on a bunch of supplements- but it did not slow my slide into the deepest depression of my life at that time (there were worse to come).

I have had a lot of problems from meds. I have had incompetent doctors as well. But right now, I am in a good place. I don't need to justify my use of medication to anyone (except my insurance company).

The irony is, I do think meds are over used. I do think patients are not told the risks. I don't think that mental illness exists in the same way that, say, diabetes exists. (Although I don't think that type 2 diabetes is that clearly defined, but that is another story). And many of the drugs used in studies have pretty small effects in the research. And yet, I use meds.

Because right now, I think that this is the best shot I have at having a life. Meds don't give you a life- but hopefully they make it possible to create one. Or rediscover the one you have, if you haven't been gone for too long-  but in some ways I have been. Other than work- which is admittedly a very big deal- I have been gone for a very long time.

There is this part of me that continually wants to try getting off of Zyprexa, cutting my dosage of Effexor, etc. And I have listened to that part of me a lot in the past, and occasionally I have been successful in lowering dosages, but more often not. Now, I just have to put that on hold for a while, and try to live. It is not all about meds. I do not want to be thinking about meds all of the time.

If I won the lottery, if I didn't have to work anymore- or at least could take a year off. Would I try to get off of my meds? Maybe- just to really know what I would be without them. If maybe there was another path for me that didn't involve all these meds. Just to know. But I haven't won the lottery. I have to go to work. I have to function. I want to live.

Insight

Yesterday I had a stressful day at work, and was really concerned I had done the wrong thing. In one case I had, in the other I hadn't- I was just being overanxious. But still, it made for a very worrying day. I had to remind myself that this was a temporary thing, this was from something that happened. This was not a sign that my meds were not working, etc.

Because my meds are really working well right now, and I have to resist the urge to tinker with them. I am, most of the time, feeling better than I have in at least 5 years, and I am more functional than I have been in years as well. And if it takes all of these meds to keep me here, so be it. I have had many times in my life when I did not expect to live this long.

If I keep questioning my meds, keep trying to lower something- like I recently did with the Zonegran, with bad results- it will take over my life. Or at least a big piece of my life. I take so many meds, there will always be something to try to lower, to adjust. If things are working, I am just going to let things stay for the moment.

Yes, I worry over what all of these meds are doing to my brain and my body. But I am exercising for the first time in years- that has to count for something too. Maybe it just takes a little more Zyprexa to get me to the yoga mat!

For years, I had been blaming my inability to do anything on the Zyprexa. I thought it was taking away my motivation. But I was wrong. It was low grade depression. And it has been the increase in my lithium and Zyprexa that has helped to break me though it.

 But I am holding the line at 7.5mg of Zyprexa, I really am. I cannot believe that there are people who take 20mg of this.

One of my weaknesses

I need to be more assertive.

I have been remiss in not being assertive enough with a co-worker. I wasn't sure how far to go in correcting a situation in which my advice was not asked for- but I did not go far enough.

It really is one of my weaknesses- my lack of assertiveness. I am better than I used to be, but still have a lot of room for improvement.

You could never guess the manic rages I have had. No one would believe that I have been in four point restraints. I remember a nurse once telling me that I was a very angry person, and that I had an anger problem. And I remember telling her (screaming, of course), that she had no idea who I was, and that I was not an angry person.

Mania was not me, did not feel like me. I knew that these rages did not mean that I was an angry person (other than in the present tense). Depression, unfortunately, does still feel like me. There is no little voice in my head telling me that this isn't the real me. In fact, the depression tells me that the is the most real me of all, the deep down authentic me.

But really, we are many things. We are always in flux. There is no real me- it is just a construct, a story I have about myself. It should be a comforting one. So why do I tell myself such bad stories sometimes?

Getting old is a bitch

I don't think of myself as old. But every now and then I get a twinge in my knees to remind me that I am not immortal. And now, after my second pilates Barre class, my knees are very unhappy, the most unhappy they have ever been. I don't think I have more Barre Amped classes in my future. I hate to give up so easily, but I'd rather protect my knees. It's not like I live for these classes.

Still, the class did such a good job of working my core and my quads. I will have to find other ways of doing this. They have a yogalates class. I think I will try that. Maybe I can tolerate that better. Or mat pilates.

All my patients tell me not to get old. Unfortunately, there is only one way to avoid doing that.

Doing better than in a very long time

I am scared of making any med changes, even though I have a few things I'd like to be on less of. Backing off of the Zonegran was bad news, since I have gone back up I feel great again. I just need to let things ride for a little bit- which I would do, if I didn't have this issue of paying for my Provigil. Now I am need to try to cut my dose, I think. And then I think I should do that in conjunction with trying to cut the Zyprexa, with makes me sleepy (maybe less Zyprexa, need less provigil). But then it gets complected again. I thought I had just figured my meds out. I hate my insurance company. You have no idea.

I still have 2 months of meds, so no decision to make just yet. And maybe the price will fall a little more in two months.

Meanwhile, I am very sore from Pilates class. I am sure I will be more sore tomorrow. I can't really decide how I feel about the class. But it really works me hard, where I need it. I like doing planks! Who would have guessed?

Good news but no answers... maybe gluten?

I got the results of my hand x-ray, at least what the doctor's assistant told me over the phone. I have no arthritis in my hand, everything is normal. I am very relieved.

However, that leaves me no closer to the source of my joint pain. They offered to refer me to a hand surgeon, but I said no. I really think that if there is something going on, it is more likely to be systemic or rheumatological than a simple orthopedic issue. If the x-rays were fine, a hand surgeon can't help me. I just don't want this to get worse.

I have to figure out if there is a chance that this could still be related to hemochromatosis- and see if I can't get a blood test at my next doctor's appointment just to totally rule that out. In the meantime, I am going to seriously go gluten free. I keep saying I am going to try it, but I don't.

I tested negative for celiac, but it seems you can still have trouble with gluten- and I have nothing to lose.

Meanwhile, I had a good appointment with my psychiatrist. I like him. Even though things aren't perfect, he decided to do nothing with my meds (just resume light therapy). Which was the right decision. What I didn't tell him was that at my next vacation I will probably try to cut back on the Zyprexa again, but that can wait. And meanwhile he gave me a prescription for Nuvigil which is currently still cheaper than the Provigil I take (because I take 2 pills), but I am really hoping that the price for generic Provigil falls fast. Now that my international supplier has become unreliable, I am really worried about "financing my drug habit" as my insurance company has decided that this is one drug that they will not pay for. And it is a very important one for me.

Tomorrow: Pilates after work. Am I up for it? I'd better be. I'm signed up.

Felt sick- went to yoga anyway

I felt really bad physically, today, especially as the day wore on. I don't know if I am coming down with something- or if there is something more serious going on with me, as I periodically think. I have had a lot of blood work that is all negative, but today I had a hand x-ray for the joint pain I have been having. And my doctor wouldn't give me the one blood test I wanted, for hemochromatosis. Perhaps if the x-rays show anything she will. Or I will just have to find another way to get tested.

But I went to yoga, although I wanted to collapse. And although it wasn't my best session, I survived, and felt a little better afterwards. It also helped with the afternoon/evening downward mood swings that I have been consistently having. I don't know what to do about those. They are really bad- and the reason I haven't been able to reduce my Zyprexa dose back to 5mg. Because if I try to lower the Zyprexa, then these mood swings become even more unbearable. 

Other than the joint pain, my physical symptoms are so non-specific. Severe, intermittant fatigue and weakness. Stomach pain- but that could be the irritable bowel syndrome. Sometimes I feel like I have a low grade fever. And pain in an increasing number of my small joints, but it comes and goes. Some people say they just want an answer. No- I want it to be something fixable! And not too terrible a cure. 

I recently found out my dad is a carrier for hemochromatosis. And so I have latched on to that. It explains a lot. And it is fixable. You just get bleed, like in the old days, to get the iron taken out of you. Well, not entirely fixable- whatever damage to joints and organs that has already been done is unlikely to reverse, but you can stop or at least greatly slow progression. 

Of course it can also cause mood symptoms, I have read. That would be incredible if I have this, and it has been causing some of my "mental illness."

But I am probably just being a hypochondriac. 

Sometimes it's not enough

They say that half of life is just showing up. But that is only half of it. Sometimes it is not enough. I get myself there, but I can't get myself to stay there.

I had tried to lower one of my medications last night. This morning I was depressed. But I was also determined that if nothing else I was going to visit family, as some people were in from out of town. After much inner battling, I sprayed some dry shampoo in my hair (great for when I am too depressed to shower), managed to brush my teeth, throw on some clothes, and run out the door before I could think of another reason not to go.

I am glad I went. I was glad to see them. But the gnawing in my stomach just kept growing, and finally I could ignore it no more, and I had to leave. 

There was a time when I was listening too much to the cognitive therapists, and I thought that I "should" feel better if I made myself do something positive. They would want me to rate my mood before and after... Which to me meant that if I didn't feel any better after doing something, it was a failure. It is not a good way to think about things.

Things are worth doing if they are worth doing. Yes, how it makes you feel is part of the package, but only a part of it. 

The one thing that should definitely make you feel better is your psych meds, if you choose to take them. I can't figure out what to do with mine right now- but I see my psychiatrist next week so maybe he will have some answers. 

I also have a problem which is freaking me out- it looks like the site I get my provigil from overseas is no longer reliable. And I can't afford to buy it in America, even though it is now generic- the price has still not dropped very much. And my insurance company has denied it for me. So I don't know what to do. Maybe try the amphetamines again- my doctor had once mention Vyvvanse, but I haven't always done well on the amphetamines. 

Maybe I should tell my health insurance company that I need to go to detox to get off of provigil if they won't pay for it! Maybe then they would pay!

What I don't understand is why it is so expensive, especially now, when it has been generic for a few months. I'm not asking for it for free, I'm willing to pay a couple hundred a month if I have to- but not what they are asking. 

Yoga I love, Pilates not so much (but I need it)

I went to my first Pilates class on Wednesday. I can't say I loved it. It was more like climbing a difficult mountain, and mid way up you start wondering why you are doing this and maybe it would be nice to stop. But at the end, you are glad you did it.

It was really hard as I have really weak abs and my quads aren't too strong too, apparently. We were working on quads on the mat. And then it came time to stand up- and my right quad just said no! I wondered if people sometimes got stuck on the ground. I managed to get up by putting my weight on my left leg. But then we did some standing work, and every now and then my quads would just start shaking, and I started wondering if people ever fell in class...

No, I did not fall. But I can still feel my quads, even today. Enough to remind me that I need more than just yoga. I need to do Pilates. So I will go back next week.

So I have three evenings a week spoken for, my early work nights. Yoga, pilates, yoga. Maybe I'll eventually get really ambitious and do a weekend class. But I'm not pushing it. Yet. This has only been a month since I started with the yoga.

I still hate Mondays

Yes it was a Monday, yes I was in a terrible mood.

Sometimes I think that, on all the meds I take, I shouldn't feel this bad on a Monday morning. And then sometimes I think that this is a good thing- it means I am not too drugged to notice or to feel!

Because the purpose of meds, for me, is not to stop me from feeling. Just to help make it manageable. Unless I am drugged into a coma, I will still have bad days. But, a day made better when I was able to stop doing my work and head off to yoga class at the end of the day. And a day made better by reading my kindle this evening while eating mashed potatoes (gluten- free comfort food).

I had a lot of little and maybe not so little things today that got to me, got on my nerves. They will be there tomorrow. But tonight, I am feel.

Meds help. But so does keeping perspective. Trying to stay mindful. And telling myself that I can only do what I can only do. Wise mind, in DBT.

Tomorrow will be a better day. It won't be a Monday!

Meanwhile, Amazon has started profiling my reading habits quite seriously since I got my kindle (and crazy downloading a bunch of book). First they figured out I like sci fi, and they have been sending me lists of best selling sci fi. Then last week I got a list of best selling hi tech sci fi. Then this weekend I got a list of post-apocalyptic sci fi. They have figured me out- they already know me too well. Scary.

What I like is sci fi about earth's future. Speculative fiction, in a way. Much of it winds up being post-apocalyptic, but it doesn't have to be for me to read it. I used to like to read about space travel and aliens and all that- but that came to an end when I went to college to and studied physics and learned about relativity. I learned that first, we are not going anywhere. And secondly, neither are the aliens. So if they do exist, the speed of light limit will guarantee that we never meet.

I still do like my stories with alien and space ships, but not the same way. Not like when I was a kid.

Still liking yoga, still not sure what to do about Zyprexa

I've been going to yoga 2x/week. I am starting to look forward to it! Who would have thought! I usually have to drag myself to just about everything I do- even if I wind up liking it. I am used to that little layer of depression making me not want to do just about anything. I go because I think I should, or the hope that maybe I will enjoy it, but not really expecting it. But I am so used to the battle, and I am having fewer of those battles with myself these days. And next week I am signed up for a Barre Amped class. I want to try that out.

I still didn't get myself into work this weekend. Well, what did I expect, a miracle? I had planned on going late afternoon- but that was when the depressed/anxious feeling started kicking in. It is happening every time I try to drop my Zyprexa dose, I start feeling really bad by mid-late afternoon. And klonopin strangely doesn't fix it. And so, even though I feel more out of it on the higher Zyprexa does, I am actually more productive on it. I had tried cutting down by a quarter of a pill last night again, but I'm not feeling good again. Just like last week.

And so I have been going back and forth over the past few days. I don't know which to try to wait out: the spacey feeling from the higher dose or the bad feelings late in the day at the lower dose. Obviously I'd rather be at the lower dose, but it is getting to the point that I almost don't care which. I just want a dose to be working and feel good on it.

It is really hard to make medication changes when you are working. Really hard. Withdrawal effects that I might otherwise be willing to put up with, even if while in bed under the covers, until they went away- now they make me panic. I don't know how long they will last. How will they affect my ability to get to work on Monday, to treat my clients, do my paperwork.

And I have been on disability, and I was always going on and off huge doses of meds- often in hospital- and had all of these side effects- but I didn't have to function. And I one time I got off of meds (including Zyprexa), I literally put myself into a coma to do so (not the intended purpose, that was to die).  I overdosed on my mood stabilizers, it took me 3 days to come out of the coma, and I spend another week in a regualr medical bed, getting only ativan. I was surprisingly ok. I felt very alive, very sad, but that seemed quite appropriate to me. But I couldn't sleep. Without the zyprexa, even the ativan they were gving me that week before they transferred me to the psych hospital, I didn't sleep,

Unfortunately, I was not a voluntary patient (they didn't even give me that option). And they wanted to put me back on Zyprexa. I asked if this drug could be dropped from my regimen. The doctor said that to do that, I would have to stay longer. Now, I knew I wasn't so crazy that I could be kept there forever-  but I wanted to be out before graduate school started up in a few weeks, I had a time table.   But I did talk then down to a lower dose (partially by lying). They also had wanted to put me on the exact same meds that I had been on- that I had been so depressed and agitated on that I wanted to kill myelf on! So I had to convince them that my doctor was about to change my meds (I had figured out by then that he was unlikely to ever call), and get myself at least on some new things and not on the same drugs. Except for the Zyprexa.

I did get out in time to go back to school. And my voice, which had been damaged during the intubation process, came back just a couple of days before classes, I was so scared it was damaged for life. And even the bruises on my wrists and ankles from the restraints in the ICU started to recede just about right then. I was very lucky. And I finished my degree, double lucky.

But that was the coma method for getting off of Zyprexa. There has to be an easier way.

First bad day in a while- or- Don't Panic!

Don't Panic! The words on the Hitchhiker's Guide to the Galaxy.

It is my first bad day in a bit. I am really tired, have no energy, I'm anxious and depressed.

It is just one day, so I am trying not to panic.

I know some of this is lack of sleep- didn't get enough last night. Some of this is work stuff. And I continue to feel like I need a bit more Zyprexa towards the end of the day. 7.5mg is too much, but 5mg I'm not sure is quite enough. Maybe I can alternate doses?

But it wasn't such a bad day- I found out I don't need a root canal. That's always a good thing.

And I finished reading "Shift" on my Kindle. I can't wait for the next book- due out later this month.

The interesting thing is that I do not remember that I already pre-ordered it- I just tried to pre-order it again. I really need to stay away from computers- and now apparently my kindle as well- after I take my ambien. This isn't the first time I have ordered something late at night before falling asleep, after taking my ambien, and having no memory for it. It hasn't happened a lot, and I haven't ordered anything too extravagant, but still- it is another reason to want to get off of the ambien.

My first hand experience of relativity

I pulled into the Dunkin Donuts parking lot to get an iced coffee after my morning's yoga class. I turned off the engine. And suddenly, the car started to roll forward! I jammed on the brakes, thinking I must be in neutral, and nothing happened, the car kept going. And then I realized, after a moment's panic, I was not moving at all. The car next to me, that I had been looking at just a moment ago, was backing up. I was standing still.

It was a very new age Saturday. I had a yoga class in the morning, and went to a drumming circle in the evening. In between, though, I didn't do very much except nap and do laundry.

I am amazed when I am able to do anything without a major battle with myself. I am so unused to that. It really makes me realize how depressed I have been for so long, even when I thought I wasn't particularly depressed. I feel like I am slowly thawing out. I feel like it is going to take a long time, but it is coming. Parts of me are still frozen, still locked up, but I am slowly thawing out.