My complaint with the universe

I got off of disability, and started working as an occupational therapist, just a little over 13 years ago. When I started working it was hard, really hard. But it was exciting, too, to be working and self-supporting and feeling like I was making a difference. And I thought that it would get easier as time went by.

And I can't say that nothing has gotten easier- but to a large extent it hasn't. I was going to go in early to do notes this morning (because paperwork hasn't gotten easier), but I haven't because I can't get into the shower (showering hasn't gotten easier). Life is still very hard- and I don't know to what extent I am just not very good with things (likely at least some of the case with my notes and learning disabilities), still having residual depression/anxiety/agitation, having side effects of meds that make me struggle more with initiation, or simply having never learned (or unlearned) the ability to do things during long episodes of being ill.

Once you are working there really aren't very many resources available to you as a mental health patient. Medication and private therapy. I finally found a private therapist who takes my insurance- not an easy task- and I have have had all of 2 sessions. But I think it will take time until she really understands what I am struggling with.

I'm not sure therapy is really going to help me that much. Maybe I need to try again to find a DBT group. I don't know what I need.

Halfway down the rabbit hole

I live in two worlds. I am a doomer- I think our civilization is going to collapse. Between climate change, loss of top soil, resource depletion (including oil)- that civilization as we know it cannot survive. I just don't know the time frame. Will I live to see it? Will it be my nieces' children who see it? I don't think we have much longer than that. I'm not necessarily of the opinion that we will go extinct as a species, as many doomers say. But we could if our nuclear reactors don't get shut down properly.

I've done a lot of grieving over this, and somewhat come out the other end. I want to keep living my life. I don't want to get pulled down by this. I want to go on with my daily life, because I don't know what else to do.

I tried demonstrating and it seemed pretty useless. I have written my congressmen. I tried getting involved with a political group, only to realize that I have nothing to offer- I am no good at a anything political. I am not a social being. I don't know if there is anything to do anyway.

So I focus on fixing my patients' broken wrist and fingers, helping their pain or manage symptoms. I am effective on the micro level, just not the macro level.

Mostly, it is just another thing that makes me alone. I haven't met other people who really seem to feel the same way- except online. And people think it is my depression talking, but it isn't. Perhaps my depression has allowed me to see it- people with depression are better at perceiving negative probabilities.

When I grieve for my mother, at least other people understand somewhat. When I grieve for the world, then what?

If an asteroid were going to hit the earth, would you want to know? And if you knew, would it change how you lived your life?

I still can't believe it

I still am in shock that Trump won. I didn't think the polls could be so wrong. I didn't think so many women and non-whites would vote for him. I just didn't think he would win.

I know he spoke to the issue of the declining middle class- and he even had an explanation: globalization and immigration. But I think the bigger issue is technology, and no one is talking about that. What do we do as technology takes away our jobs? 

Trump's election makes me that much more a climate change doomer. China is the only hope to do anything about it now- they have the size and the economic clout to make an impact- plus they are not a democracy. And perhaps they could get America to follow. 

I don't know what is worse- if these climate change deniers are lying or that they really believe it. Don't you care about your children and grandchildren? Or perhaps you think it is too late- and maybe it is- and some people would rather not know if there is an asteroid heading towards the earth. What is it about America that has produced such a large number of climate change deniers? I suppose it is a type of "American exceptionalism," But the not the good kind.

Whatever our legacy to future generations- what they will care about most is how much of a habitable planet we have left them. How much arable land. How much fresh water. How much land that is not under water. How much land that is not too hot during certain times of year to survive exposed. How much land and water is not poisoned with chemicals or radiation.

 

You can't have everything

When I am extremely depressed, all I want is to feel nothing. When I am numb, all I want is to feel. When I am extremely depressed I would give my right arm for the pain to stop. When the pain lets up, I start to care about my physical health and worry about the long term effects of my meds, and how they seem incompatible with a long and healthy life.

I am trying to make me peace with Zyprexa right now. The higher dose seems to be going a little better this time round in terms of feeling out of it and wanting to eat everything in sight. However I still need to sleep a lot. I hope that gets better.

I hate antipsychotics but recently I have hated living even more, so I have to chose.

I had high hopes for the CPAP. I have sleep apnea. From one perspective- total number of episodes a night, it isn't too high. But during REM sleep it is severe. So now I have a CPAP machine. I hoped it would help the depression. It hasn't- or maybe I'd be worse without it as it is my bad time of year. I am less sleepy- or was until I increased the Zyprexa.

Maybe I need to move to Florida. I have a light box- and it helps, I used to be in the hospital every December and that is no longer the case- but it doesn't help enough.

I am grateful it is the weekend. I have a little time to breathe. And try to get outside- it is very sunny out. That has got to help. And stay away from news. That is very depressing.

Hello Vraylar, goodbye Vraylar

I tried it, it didn't work for me. Maybe I had given it more time- but I am in a place where I cannot afford to get worse before I get better. I really cannot get worse.

So I am going back to my old standby, raising the Zyprexa. And hoping that I will eventually stop feeling sleepy and out of it- maybe that part will not be so bad now that I am on the CPAP machine. It is one thing that it makes me hungry and raises my cholesterol. It is another to not feel good because I feel out of it. No, that is not true. If I truly felt good I would want a long life, and then I would care more about the physical side effects too.

Anyway, so far it seems to be making life more bearable, each minute isn't such complete agony.

Politics is affecting my thinking too. Obamacare is probably toast with Trump in the White House. That means there will probably be no way for anyone with a pre-existing condition to get health insurance except through a job. So there is no way for me to work part time, etc. I need to keep my job and work full time.

I cannot believe that he won, on so many levels. But mostly because the polls were so wrong. I went to bed early because it seemed like it would be a long night- but expecting her to eventually win. And woke up and I was shocked.

It's not like I was a big Hillary fan. But the lesser of two evils- that was what I thought. And at least she admits the climate change is real and caused by humans. That is probably my biggest issue. Climate change. I have nieces. I think the biggest thing that future generations will care about is how much of a habitable planet we have left them. Everything else is secondary.

I know that the Paris agreement wasn't enough- but it was a start. If Trump gets rid of that we have no start. And the CO2 levels keep rising. It's not like we can just decide at some future date to stop burning fossil fuels and they will suddenly come down. Not in time frames meaningful to human beings.

I'm basically a doomer, and Trump's election only strengthens my position. No wonder I'm depressed. Although that is a different kind of depression than the one I have had the past couple of weeks. I have sort of my chronic depression and then my depressions when I am sure that my brain is broken. When it is on fire.

Still in my loop

I still haven't decided what I am doing about the Vraylar. But I won't start it now anyway- not until another weekend. And next weekend I am at my brother's, so it will be at least 2 weeks away. Could I really get off of Zyprexa? I have tried so many times, failed so many times. But what I have done this weekend is cut my Effexor, and it seems to be helping. I think I was blaming the wrong med for making me tired and out of it- it isn't the half milligram of klonopin I take at night, it is the Effexor I take in the morning. How low will I go? I don't know. So far no increase in depression.

Westworld is on tonight, my current favorite show. I don't watch a lot of shows- Mr. Robot, Game of Thrones, the Daily Show, and now Westworld. It has even given me a way of thinking about my life. I am living in a loop, just like the "hosts" on the show. I need to break out of my loop. Because it isn't a very big loop, and it isn't a very happy loop. And too much repetition.

Today is my monthly Costco trip to fill my Provigil. And to buy as much food as I can for the coming month, because I am not into grocery shopping these days. That is one of the first things to go for me with depression. It's not in my loop!

Slaying dragons with Vraylor

No, I didn't make it up- I saw a post in which someone said that Vraylor sounds like slaying dragons, and it does. Maybe it is the name of some great dragon-slaying sword. Or just another sign that there are way too many drugs in this world and the names are getting ridiculous.

But I don't want to slay dragons, I want to swallow one. My life has been so blah recently, I need a little fire in me. But a dragon slaying sword by my side, maybe that would be OK.

The past few times I have seen my psychiatrist I have come up with all kinds of excuses to explain my bad mood. Maybe I was right, but I was still tired of doing that- and my mood has dipped recently with the season change. So I decided to see what he might have to offer, medication-wise. And his answer was Vraylar.

He said he has had good results with it with bipolar. The goal would be to eventually get off of the Zyprexa, but not yet. It is a new drug, there is not a lot out there on it. I have looked up all the side effect rates and efficacy rates and receptor occupancy rates and compared them to everything else I have been on- driven myself crazy, basically. And finally decided to give it a shot. Something has to change- and I'd probably have more energy on that than Zyprexa, if it works.

But the problem is insurance. My psychiatrist gave me a card for 30 free days of it- and said that if it worked he would deal with the insurance pre-authorization. And I didn't think it should be a problem- I have been on risperdal, seroquel, zyprexa, geodon, and abilify. But when I looked up the medical bulletin on Vraylar for Aetna, they want you to have tried at least 30 of a generic antipsychotic (I have), and also Latuda (I haven't). Latuda is a brand name drug, and must be giving Aetna a really good deal with rebates. It is really practicing medicine without a licence to say that you have to try a specific drug before you can try another.

I haven't taken Latuda and I don't want to take a drug just because my insurance company tells me that I should. So I don't know if I will get Vraylar approved, and I don't want to start it if it isn't going to get approved. And it is over 1,000 a month- truly ridiculous. I just think this is going to be too much drama dealing with insurance companies and I can't handle it. It makes me feel so vulnerable.

I don't even know if it would work. I find it hard to get too excited about another antipsychotic- I hate antipsychotics- but Zyprexa got me off of disability.

I got a call from CVS. My prescription is ready. I can pick up my Vraylar. I don't know what I am going to do, I suppose I should call my psychiatrist.

I think I'll be writing again

I've been on an unsuccessful quest to find a new therapist after a break. I'm trying to find someone who takes my insurance, and that is no easy quest. The last therapist I talked to told me that no good therapist is in-network anymore. She may have a point- I have tried a few in-network therapists and it hasn't worked out. I tried to tell her that she should change her listing on Psychology Today which states she takes Aetna (but it only meant she would send the bill to Aetna if you are lucky enough to have out-of-network benefits, and then balance bill you for the rest). I no longer have out of network benefits, so that doesn't help me at all.

The last person I called never called me back. I think I have another couple of prospects, but again I don't know if I can trust the listings anymore. If it says they take my insurance, does it really mean that they do?

But maybe all of this means I am meant to do without. That therapy is a luxury, and I'd rather spend my money on other things. I could go to my hospital's clinic, but I have never had good luck at clinics. I'd really rather not. And I don't want my therapy records anywhere near my work- with everything electronic.

I am still so mad at my hospital for getting rid of out of network benefits. In almost every field of medicine it is easy to find a provider who takes my insurance- except for mental health. People with mental health issues are the most affected. But we don't matter. 50% of psychiatrists don't take insurance, and I am sure it is much higher in my state- it has one one the highest levels of doctors overall who do not take insurance.

Of course if insurance companies paid more for mental health, more mental health providers would take insurance. My last therapist looked into getting a contract with Aetna, but they would have paid half of what she normally charges.

So that is my vent for the day.

I'm not a Jedi yet

OK, I have mastered phase 1 of distress tolerance, most of the time. I can get upset and not have to take a klonopin, cry half the day (maybe half an hour)- but I survive. What I haven't figured out how to do is to be upset and to function. And really, that is what it is all about. If you can't live your life, what is the point of tolerating distress?

I am upset because I am hypothesizing, time travelling as my therapist says. Projecting the worst. I am having some kind of heart arrhythmia. It really started a few months ago, when my mother was sick, but I couldn't deal with it then so I just ignored it. And then I got into the habit of ignoring it. Until a couple of weeks ago because it is happening more frequently. And then I decided to lower my Effexor. No difference. Stop my thyroid. No difference. And then Friday I finally got a new blood pressure monitor- my old one broke- and I saw that when I feel my heart pounding it is 138 at rest. Which scared me. No, really scared me.

My mom had A fib at a very young age and had a stroke in her 50's. So it could be that. My dad also has A fib, but he got it when he was older like most people. My half brother also has A fib. But it could also be my meds. Lithium causes arrhythmias. Possibly Provigil. And almost all psych meds cause QT-interval prolongation. Will I have to stop meds? Will I have to stop Provigil? Will I be able to keep working if I stop the Provigil? Will life be so hard that I won't even want to keep working or living if I have to stop it?

So now I am freaked out. Afraid that I have A fib and will have to go on blood thinners (no more backpacking), or that I will have to go off of my Provigil. And also afraid that doctors won't be able to figure it out. I take too many meds!

Monday morning I will call my GP. Probably I will go in and have an EKG and my heart won't be doing it. Most of the time it is not. Then my guess is referral to a cardiologist for a holter monitor.

Meanwhile I have things I need to do. Except that I can't function. I should go into work and do notes. I should do a load of laundry, I can't even do that much. I should go to the gym. The grocery store.

This week I have had a lot to deal with including my car needed repair, a delay in the final stage of my dental implants (it seems like it will never end), and a tremendously busy work week and getting behind on notes. Yikes. And I have been so tired.

I've been thinking about trying to come down on the lithium even before this. It helped with the depression, but not with initiation- and I need a ton of help there. I would have expected anything that helped my depression to help at least a tiny bit with initiation, but I don't think that it did.

Maybe that would be the easy answer- that this is coming from my lithium and I have to come off of it. Except the last time I was taken off of lithium cold turkey I went insane.

Missing my mom today

Maybe it is the mother's day ads that I am starting to see, and the ones that pile up in my in box. Maybe it is nothing at all. I keep thinking of things that I wanted to do with my mom, things that we never got to do. And now never will. Perhaps I should try to do those things anyway. But I miss her. 

I did finally make it to Costco and got my Provigil. But I think it is too late in the day to take it. It will have to wait until tomorrow. And straighten out my lithium tomorrow too. As well as going in super early to get my paperwork done from last week. Of course. 

Another weekend that has passed and I really didn't do much. It just passed. Or I could think of it this way: another weekend I survived. Sometimes I think that on my birthday: another year I survived, in my endeavor to die of old age and not by suicide. Of course with the things I have been reading recently I might be lucky to die of old age and not a side effect of abrupt climate change. 

This reading has me very depressed, and yet I was prepared for it by my earlier peak oil obsession. But surprisingly it does not make me feel suicidal- at least not for the moment. I want to see how things turn out. Simple curiosity. But if things get bad, I do not think I am very tough. I wouldn't make it in a Mad Max world. 

Trouble with meds

I am out of Provigil, I have been for a week. My health insurance plan won't pay for it, so I drive 45 minutes away to the nearest Costco to buy it- they have it for an affordable price. But it is a hard drive when I am depressed, and I have been depressed, and so I haven't gone. It is a catch-22 situation. And the two days I wasn't so depressed I started thinking maybe I don't need it, maybe I can get off of this drug, take less meds, and not have this monthly trip and expense, etc. And today I was so depressed and anxious I took meds so that I couldn't drive. I have to go tomorrow.

And then I can't find my lithium. I was doing my meds for the week today and I can't find my bottle of lithium anywhere. I have extras of most of my meds, but not really with lithium. I just had five pills- enough for all of tonight, and two out of three for tomorrow night. Then I'll have to go to the pharmacy and just get a refill and pay for it, because it is too soon for insurance to pay for it. I hope I have a refill left.

Too many meds. And my apartment is too much of a mess. Nothing much has changed in my life.

Which is why I am thinking of quitting therapy (again). I quit therapy and then restarted when my mother got sick. But now I am not sure why I am going- I know what I need to do, I just need to do it- and therapy isn't helping me do things. Plus it costs a lot of money.

I like my therapist but she doesn't take my insurance and I no longer have out of network benefits. I tried 3 therapists in-network but it didn't work out. I don't have it in my to try any more. And with my high deductible plan it would still cost a lot anyway.

My psychiatrist doesn't take insurance either, but I only go every three months most of the time so I am keeping him. To find someone who is okay with all my various meds and I like and who seems good- I'm not going to mess that up. I have had too many bad psychiatrists.

It has been a rough week, I can only guess at how much of it from the lack of Provigil. But by Friday I really didn't want to be alive.

Not wanting to be alive- that is a good thing if you are reading or watching Guy McPherson, the scariest man alive. He predicts "near term extinction" for human beings by 2030. There are a lot of scary arguments he makes, but I am still not sure how he comes up with his date. I am also not sure that I can really accept that ALL human beings will be dead- maybe a few will find places to make it.

The thing about his position that is attractive- is that we no longer have to fight. We no longer have to write letters to the editor or demonstrate or lobby for political change. We can just sit back and watch the collapse. But if he is wrong- then we have given up our power to fight.

I don't see a political solution. I don't see us cutting fossil fuel use significantly in time to prevent catastrophe. I see geo-engineering as the only thing that can save us, or perhaps just buy us more time. Geo-engineering is still a dirty word for most, but I think it is the only thing we might be capable of doing to save ourselves.

Halfway an orphan

My mother died last week. It was, as much as could be, a "good death." I was holding her hand, her mother and my cousins were there as she took her last breaths, and she was at home. Of course there was a little conflict with my grandmother who said she is not dying and tried to get me away- so we had to be on opposite sides- but it was as good as could be expected. Her sister had stepped out to buy something, and I'm kind of glad she did- I think she might have panicked and wanted to call 911.

The week before was pretty awful as I battled with her family over hospice. They didn't want it, I did. I had medical power of attorney, but she lived with them. It was bad. Finally they agreed to hospice at home and we got her out of the hospital. Her vitals were so unstable I was afraid she wouldn't survive the ambulance ride home. But she did, and two more days at home. I got her pastor to come- and we are Lutherans, so no last rights. But still- she died within an hour of his visit. I'm so glad he could come.

I was with her for a week. It was a very intense, sleep deprived week. I will write more about it later. Then the next week was spent recovering, working with the funeral home, planning the funeral, and working with a probate lawyer. She had no will and hasn't paid any bills since she got sick, apparently. It will be a mess, but I made my brother executor.

This past week I asked for off as well. Work gave it to me as unpaid time, even though I didn't have enough PTO. I'm glad. I feel like I just needed it. And this weekend I went to visit my brother and family. Tomorrow I go back to work.

I'm a little anxious about it, but it is time. What would I do with myself if I didn't go back to work? I think my boss was worried about my stability, she said I could take a medical leave if I needed to. I don't. I have been grieving for my mother for a long time before her death. Even that whole last week, when I would spend the nights in the hospital- she was on the telemetry unit so I could watch her vitals- and I would cry, because I knew that they were so unstable. I didn't see how this could go on. And it couldn't.

Whatever issues I had with my mother, I always knew that she loved me. And now she is gone. And my dad is 10 years older, and really starting to slow down this past year. I need to start taking care of myself. I need to be my own mother.

My life is gray

I am not having a lot of "I can't stand another second more" moments these days. I am just having my moments of wondering how much longer I have to put up with going on living. There seems to be nothing that I want. I can't even figure out what to eat for breakfast- there is nothing that I want to eat. But it is my late day at work, I will be starving by lunch (and then eat something bad).

I have a problem with initiation and with keeping going through difficulty and I don't know how much of it is depression, meds, or my underlying personality. But perhaps it doesn't matter. The answer is the same- I have to treat initiation as a muscle and see if I can strengthen it.

There is this catch-22 about depression. If you are depressed, in part because your life is empty and miserable- then the answer, at least in part- is action. But the thought of action seems very unpleasant, and it is all that I can do just to keep going in the basics of my life- how can I do more? And so the thought of doing more makes me more depressed, and yet not doing more makes me more depressed because it does nothing to make my life better.

There are many reasons why I am so devastated by my mother's cancer. But a part of it is that I have so few people in my life. My brother has a wife, kids, even in-laws. I still can't figure out how he turned out so normal! I think his wife has a lot to do with it. Plus he has always made connections with people, wherever he went.

In two and a half weeks I go to see my mother, who is now on oxygen. I'll see if a week is the right amount of time to go for. My plan is to go every month until I use up my PTO, and then to start using family leave. I don't know how much time she has left. A doctor in July told her she had less than a year (and he made it sound like quite a bit less) if she did not do chemo or surgery. But that is just an average, and I don't know if any of the alternative things that she did bought her some time.

Faster and faster

My mother was in the hospital again. They called 911 when she felt like she couldn't breath Tuesday night. She just got released. They sent her home on oxygen. This is going to be a big adjustment.

I think the hospice discussion is going to happen soon, but I don't know if I need to be there in person to bring it up. She seemed to frazzled today to talk about it on the phone, I wasn't sure the timing was right. I wish I was going to visit them earlier than I am- I don't know if it can wait a month.

I'm glad that she had a good Thanksgiving with her children and grandchildren. It has been downhill from there. Somehow I didn't think it would be so fast. When they said under a year without chemo, I thought somehow she'd get the full year. And I thought that there would be time during which she would still have some health and not be so focused on finding a cure that we could do something together. But that was my wish, and it is her cancer. She will spend it doing what she wants.

I want her to find acceptance. What else is there at this stage? I want her to have peace. And I want to be able to really talk to her- but maybe that is my fault for treating her like a child and not telling her what I think the truth is more often. And I want to be there. But I don't want to quit my job here.

I want, I want. I need to accept. At least today I am not crying. Amazing what an increase in Effexor can do. That was what stopped the tears. I'd like to say it was radical acceptance or inner strength or something. It was drugs. But drugs that let me do my work. There have been tears, and there will be a time for tears again. But when I am crying at work- that is what is unacceptable- because then I can't do my job.

And so it begins

My mother was in the hospital last week for two nights. Of course no one told me until I called. She got a blood transfusion for anemia, potassium, fluids, and vitamin K because her INR was so high. Of course no one bothered to call me, I didn't find out until the second night when I called. They also did a chest x-ray because of her constant cough. The last MRI found a spot on her lungs- and pancreatic cancer can spread to the lungs. Now there are more spots, and she has fluid in her lungs.

I have been a total wreck since then. I feel like I am falling apart. It is not that I didn't know my mother was dying, but somehow perhaps I didn't have a timeline for it. And I feel terrible for being so far away. And my mother and my aunt are continuing to fight so horribly, neither makes sense. My mother is less and less rational and my aunt is drinking more and more. And they both still talk as though they can beat this. Maybe they will go to Mexico to a clinic. Or somewhere else. I again made my offer to my mother- come here and I'll get a two bedroom apartment and maybe you can have some peace. But she won't leave her mother. Even though, eventually, she will be and my aunt will be the one responsible for her.

I spent the weekend kind of medicated myself. Zyprexa and klonopin. I slept a lot and cried a lot. And somehow got myself into work to do paperwork on Sunday, although not nearly as long as I needed to. This morning I am feeling somewhat better.

If my mom's life was chaos, I suppose it is only fitting that her death would be too.

Partially it is the chaos and conflict that is getting to me. I can't handle it. And partially it is the increasing realization that I will never have the good times with her that I had hoped to have. I really hoped that, after her mother died, she would come live near me. Not with me, but near me. And maybe now that she is not drinking and neither of us is too mental at the moment, we could have some kind of a good relationship. But it is not going to happen.

And it is all the more of a loss in my life because I don't have that many people in my life. My brother has a wife, kids, even in-laws. I think it is different.

There was a time when I thought that 75 was old. It doesn't seem so old anymore. Especially when my dad is 85 and my grandmother is 95. My mom will probably be outlived by her mother.