tag:blogger.com,1999:blog-798616999196314052024-03-13T00:43:24.281-04:00Bipolar and the CityNo longer in the city, but still mentally interestingJean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.comBlogger588125tag:blogger.com,1999:blog-79861699919631405.post-26398661593839084342016-12-12T07:12:00.000-05:002016-12-12T07:12:41.799-05:00My complaint with the universeI 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.<br />
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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.<br />
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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.<br />
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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.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com2tag:blogger.com,1999:blog-79861699919631405.post-54733856761967327892016-11-27T16:36:00.000-05:002016-11-27T16:36:01.904-05:00Halfway down the rabbit holeI 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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When I grieve for my mother, at least other people understand somewhat. When I grieve for the world, then what?<br />
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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?<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-46750172335507368862016-11-12T19:14:00.001-05:002016-11-12T19:14:30.511-05:00I still can't believe itI 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.<div>
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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? </div>
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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. </div>
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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.</div>
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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.</div>
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Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-35976831240521775552016-11-12T09:50:00.001-05:002016-11-12T09:50:49.885-05:00You can't have everythingWhen 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.<br />
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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.<br />
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I hate antipsychotics but recently I have hated living even more, so I have to chose.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-85648456896700071582016-11-10T08:50:00.000-05:002016-11-10T08:50:24.210-05:00Hello Vraylar, goodbye VraylarI 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.<br />
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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.<br />
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Anyway, so far it seems to be making life more bearable, each minute isn't such complete agony.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-75030385652669257442016-10-30T11:24:00.000-04:002016-10-30T11:24:37.290-04:00Still in my loopI 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.<br />
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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.<br />
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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!<br />
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Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com4tag:blogger.com,1999:blog-79861699919631405.post-7998072871848205592016-10-29T12:48:00.001-04:002016-10-29T12:48:15.929-04:00Slaying dragons with VraylorNo, 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-15426384701379401762016-10-15T17:01:00.000-04:002016-10-15T17:01:12.054-04:00I think I'll be writing againI'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.<br />
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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?<br />
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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.<br />
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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.<br />
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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.<br />
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So that is my vent for the day.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-37379453339933297012016-07-24T13:20:00.001-04:002016-07-24T13:20:19.444-04:00I'm not a Jedi yetOK, 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?<br />
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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.<br />
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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?<br />
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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!<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-68003372092337121982016-04-24T17:19:00.001-04:002016-04-24T17:19:47.290-04:00Missing my mom todayMaybe 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. <div>
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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. </div>
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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. </div>
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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. </div>
Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-69253993751933914762016-04-23T20:17:00.000-04:002016-04-23T20:17:22.399-04:00Trouble with medsI 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.<br />
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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.<br />
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Too many meds. And my apartment is too much of a mess. Nothing much has changed in my life.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-22941198962902581132016-04-03T17:30:00.001-04:002016-04-03T17:30:35.076-04:00Halfway an orphanMy 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-74082021205864050092016-01-26T08:06:00.001-05:002016-01-26T08:06:00.659-05:00My life is grayI 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).<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com3tag:blogger.com,1999:blog-79861699919631405.post-46074034253893441472016-01-20T21:08:00.001-05:002016-01-20T21:08:43.709-05:00Faster and fasterMy 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-23579420483392504822016-01-18T06:55:00.000-05:002016-01-18T06:55:43.083-05:00And so it beginsMy 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.<br />
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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.<br />
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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.<br />
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If my mom's life was chaos, I suppose it is only fitting that her death would be too.<br />
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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.<br />
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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.<br />
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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.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com3tag:blogger.com,1999:blog-79861699919631405.post-82370569381873065642015-12-24T07:13:00.000-05:002015-12-24T07:13:04.652-05:00I'm in a strange place (for me)I'm doing better enough that I am actually thinking about lowering medications. I actually have already lowered my Effexor from 450mg to 300mg, and after a rough month I think I am in at least as good a mood as I was before. Should I go lower?<br />
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It is not that I don't have my down times- but there are things that meds can't help me with- except to get me through the moment. Like last weekend when I was so overwhelmed with everything I had to do I shut down and couldn't stop crying and took Zyprexa and klonopin. But the meds never really got me to be able to multi-task and prioritize and have the executive skills that most people have. They never helped my initiation. I have to work on that in other ways. DBT. Meditation. And when it gets to be too much, I run to my pills maybe- but that is better than taking higher doses all of the time and being too out of it.<br />
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I've also lowered my Provigil by half a pill. And the klonopin, which had been creeping up, is back to half a milligram a day most days- except for the days I am too wound up at the end of the day to sleep. Then I might take another quarter milligram.<br />
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I know that the key to this is doing it really slowly. I should stay where I am with the Effexor for a while. But the reason I think that maybe I should get off of it is that if I forget to take my morning meds (but I take my Provigil separately, so I usually take that one), I often feel better and have am less tired- until I start feeling withdrawal. I don't know why. Could it be the morning Effexor dose I am missing? The morning Zonegran? My blood pressure medication? I should experiment.<br />
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I also feel like I can't go off of the Zonegran unless I go off of the Effexor, or at least to a low dose of it. I once had a seizure- during a brief time when I was not on an anticonvulsant and just on lithium- and they said that it was from high levels of an antidepressant. So I am a little hesitant to take an antidepressant without an anticonvulsant, especially a high dose of one.<br />
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It is really nice to have a 3 day weekend with the holiday. Not just this week, but two weeks in a row. Plus we are closing early today, I think my last patient is at 1:30. Not too many people want to come to therapy on Christmas Eve.<br />
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Every year at Christmas patients give us food. This year must break the record. We have so much candy, chocolate, cookies, and cakes. It is unbelievable. And very sweet- in both meanings of the word.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0tag:blogger.com,1999:blog-79861699919631405.post-49582571714759906842015-12-12T11:58:00.000-05:002015-12-12T11:58:39.399-05:00Still moody, but at a higher levelI am doing much better. My lows aren't as low and my highs are higher. I am still moody, and my mood swings can be quite severe. Sometimes it is my fault- like the night I had wine and felt awful the next day, and then yesterday when I let myself run out of synthroid. And sometimes it is just the pressures of life that I am responding too as I am trying to get caught up from being depressed for so long and my mother and various other things. And sometimes I just don't know.<br />
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I still have trouble with initiation but it is a little better. And I still have trouble with energy but most days it is better, at least somewhat. I think those are the hardest things that I deal with.<br />
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I wish I had more weekend. Tomorrow I am going to a Handel's Messiah sing along, something I have always wanted to do. I am going with my day near where he lives. I sang it in glee club in college- well, some of it. And they will have scores there. I think it will be fun. But I am basically going to be losing the day (other than also making my monthly trip to Costco for my Provigil). I won't make it to church, I have been saying I would start going to church for advent. Last week I was at my dad's for his birthday. And now this. Not enough time.<br />
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Today I need a day at home, I really do. I had so much going on this past week- even though some of it good- I am still someone who needs to recharge. If I am really good I'll make it out for a walk. But I have mountains of laundry to do and so much cleaning to do.<br />
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My dream is to work fewer hours a week. I work 40 on paper (which is 42.5 including lunch). I have always worked 37.5 in the past, so this job is more for me. Plus I put in a lot of extra time with paperwork- and occasionally stay late to get in an urgent post-op patient in. 36 hours would still be full time, and that is what I really want to work- I think it would make a big difference in my energy and I could still afford to live on it. But it is not an options- they said that it would take hours away from the position and they don't want to do it. And really, that wouldn't mean there are less patients. We are a small department and I am the only full-time therapist at my site.<br />
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But things may change. Insurance is getting worse- I had a patient come in the other day with a $100 co-pay. She is not coming back. We may find that we are not getting enough patients to justify my hours. Especially during the slow season. And I could flex up during the winter when it seems to get crazy with all the wrist fractures from all the falls. But we also have a new hand surgeon- and although he is only at our site 1 day a week, that may be enough to keep our numbers up.<br />
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I think it takes more energy to create a life than to keep a life going. And I have no life other than work, and it has really been that way for many years. It has been hard enough to keep that going. I thought my next step would be church, but other things are getting in the way. I think that eventually I want to join a chorus- I just found out about two that are possibilities- you don't have to be wonderful singers who can sight read. And I want to take piano lessons again- but I don't think I can afford that plus therapy at the moment. I just started up therapy again with my old therapist who doesn't take insurance after two unsuccessful tries with in-network therapists. Now that I no longer have out-of-network benefits, I was hoping to find someone who took my insurance, but I don't have the patience to keep trying.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-11790253517811722222015-11-14T17:13:00.002-05:002015-11-14T17:13:57.550-05:00Setting the bar pretty lowI saw my psychiatrist last week and I told him how well I was doing. Afterwards I wondered if I had really meant it- I am still pretty miserable. But I realized that I no longer want to kill myself, and haven't in the past month or so, and compared to where I was a couple of months ago, that is quite a bit of progress. So for me, not being suicidal is doing well, I guess. I hope that is not as good as it gets.<br />
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My mom is still doing reasonably well although the tumors are progressing and she is starting to have more digestive problems from not being able to absorb her food as well. She still thinks she can beat this, and is trying a lot of things. She feels overwhelmed, and I would to with all that she is doing. That is one of the reasons that I can't be there. I don't think she is going to beat this.<br />
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This week I had a mammogram. I am not even sure I believe in them with all of the recent research, but I did it. I decided, though, that if they found another thing that had to be biopsied or followed with ultrasounds that wasn't cancer that I was going to stop having them.<br />
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The violence in France is pretty awful. Extremist Islam is really scary. During the Reformation, Christians managed to kill off a third of the population of Europe using swords and bows. What will these Islamists do with access to machine guns, bombs, and weapons of mass destruction?<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com3tag:blogger.com,1999:blog-79861699919631405.post-80289065536504246322015-08-22T10:38:00.001-04:002015-08-22T10:38:43.010-04:00Back homeI spent almost a week at my mother's. My brother was there too. We had scheduled the trip because she was supposed to be having surgery this past week, but that had been cancelled after her last MRI. But we went anyway to support her and go with her for second opinions, to get her port put in for chemo, for her appointment with an alternative doctor, to organize and copy documents, etc. It was good that we went. And good to go away.<br />
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I feel like a bad daughter for saying that. But it wasn't even my mother that was the problem, it was my grandmother- who has a mean streak and I never got along with, and now that the is old and her memory is going when I get angry I can only feel guilty, I can't defend myself. And the drama in my family, between my mother, sister, and grandmother- who all live together- it just too much for me. I hate conflict.<br />
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I feel incredibly guilty that I will not be there next Thursday when she is supposed to start chemo. I don't have a lot of PTO left. I do have 12 weeks of unpaid PTO that I can take- but I don't want to take it too soon , because that is all that I can take. And if she is going to have 3 months of chemo and then surgery- I can't use it up all now.<br />
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I also have doctor and dentist appointments in September. And I am trying to save up money for unpaid leave. I have enough money for 1 month. I need two months more.<br />
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My boss asked me if I wanted to move to Atlanta. I felt like she was trying to get rid of me. I don't know if that was her intent or not. I feel like I should move there, I just don't want to. I don't like it there. Plus if I start a new job there I won't have any FML for a year.<br />
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I have to stay at my current job until January to get that little bit of a pension I will get, before they froze it and went to a 403b. I don't know if taking a FML changes that, if I would have to stay longer. I should ask HR. Also, with my implants, I think I don't get the actual teeth until March- so I will at least need to be coming back here until then.<br />
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When I have thought about moving, it has always been about moving closer to my brother and nieces. Never farther away. But for now I am staying put.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com5tag:blogger.com,1999:blog-79861699919631405.post-53910993700804309102015-08-09T08:25:00.000-04:002015-08-09T08:25:01.896-04:00I can't imagine what my mom is going throughI am still trying to understand this. How is it that one month ago, in the hospital, they only saw the bile duct tumor- nothing in the pancreas in the MRI or other imaging. In fact things looked good enough that they thought they could wait on the Whipple surgery for her to have her knee fracture surgery first.<br />
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Then a month later another MRI finds pancreatic cancer that is so advanced that it is no longer resectable. Did it grow that fast? Was it a bad MRI in the hospital? Was it misread? I know, I know. MRI's don't show everything. I tell my patients that. But it is different when you are on the other side of that fact.<br />
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I also don't know what my mother should do. When it was bile duct cancer that hadn't spread- the surgery was a no-brainer. But now I don't know. Pancreatic cancer has pretty bad outcomes no matter what you do, do you want to spend that time getting chemo and surgery that might buy you a few months or at most a year or two if you are really lucky?<br />
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From what I am reading, there are two categories- and I'm not sure what category she is in. Borderline resectable might do okay with chemo first and then surgery. It might give her some time. But if she is in the locally advanced category, then even if they shrink the tumors enough to have the surgery- which is less likely- it won't even give her as much time.<br />
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And then mom really wants to go the alternative medicine route. And when it comes to pancreatic cancer, I am not sure I disagree. I don't think that conventional medicine has much to offer. Especially if you are not a surgical candidate.<br />
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But this is why we need a second opinion. And in the end it is her cancer, her life, and she is going to handle it the way she feels is best.Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com4tag:blogger.com,1999:blog-79861699919631405.post-54500707579512980522015-08-07T18:21:00.000-04:002015-08-07T18:21:27.340-04:00False hopeIn the hospital my mother was diagnosed with bile duct cancer. They said that they caught it early and that they could take it out. Awful surgery, and no guarantee that there wouldn't be a recurrence eventually, but generally hopeful.<br />
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Now that has changed. My mother went to see the surgical oncologist and had another MRI. And she has a new diagnosis. Pancreatic cancer. And supposedly this is primary, and it spread to the bile duct. Somehow it never showed up on any of her previous MRI's, except as a shadow on the last one. But now there is a tumor. And the surgeon doesn't think he can get it all out, so there is no surgery.<br />
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He does want her to try chemotherapy and radiation, in the hopes that this will shrink the tumor enough to make it resectable. Then would do the surgery. But I don't know what the odds are that it will, or even that it will prolong her life.<br />
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I wish that I had been there. They didn't have the presence of mind to ask the right questions. It is so hard not living there.<br />
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Pancreatic cancer does not have a good prognosis. It is worse than bile duct cancer.<br />
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Yesterday I was a wreck. I left work in tears. Today I am mad. Mad that they didn't find this sooner, with all the doctors she has been to and emergency room visits for pancreatitis and pain. Mad that in the hospital they told us that this was something else- and something that they could operate on. And what I don't know is, if the MRI at the hospital was just unclear, or if her tumor has grown since then, and if she would have been a surgical candidate if they had done the surgery right away.<br />
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And I'm mad at all of the doctors who didn't want to give her pain medication over the past few months because they didn't see anything "structural" causing her pain on imaging when she really had pancreatic cancer.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-45695750882860901252015-08-04T20:47:00.000-04:002015-08-04T20:47:59.528-04:00Generic ZyprexaI have been handling the higher dose of Zyprexa, 7.5mg, so much better than I have in the past. I am not as sleepy or flat or tired or even hungry. And I wonder if it is because I am on a new generic. They can vary quite a bit in their potency, up to 20% either way. Perhaps this one is not as strong. At least that is my theory. I hope they don't change generics on me again anytime soon.<br />
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The Zyprexa has helped my anxiety and agitation to the point that I am totally off of klonopin. That is a really good thing. I didn't realize how much it was affecting me, even those little bits I was taking. I still feel anxious, it is not like I don't, but I can stand it. I don't have to leave work or crawl into bed or take klonopin.<br />
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I am determined not to take anymore klonopin, but I also cannot imagine life without a prn med- which seems really pathetic to say. But having been out of control manic- there was a time I wouldn't go anywhere without klonopin in my purse. Just in case. I guess instead of klonopin I could use a little extra zyprexa if it came down to it.<br />
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The Zyprexa has helped my depression but not knocked it out- but I wouldn't expect it to. It is life. I have a lot going on. And it hasn't gotten me off of ambien either as I had hoped. At least not yet.<br />
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A part of me is still not okay with the Zyprexa increase- but I am okay with it for now. Maybe if I get to a place where I am getting a lot of regular exercise and have a lot of good things in my life I could take less- but not now. It will have to be. I will get fired if I can't get my notes done again. Curiously I am better with my paperwork on more Zyprexa.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-66930558802808835372015-08-02T11:43:00.000-04:002015-08-02T11:43:57.009-04:00Learning to waitMy mom's surgery isn't for another couple of weeks- for reasons that make sense, and yet- the more I read about this cancer, the more I wonder if it was the right decision to wait. And I wonder if the biliary stenting that was done to treat her jaundice was a mistake- if that could just spread the cancer as some suggest (but there isn't good data yet), and if they should have gone straight to surgery. But I don't even know if that was medically an option. Maybe her body couldn't have handled the surgery like that.<br />
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The prognosis for this type of cancer is not great, even when it is apparently resectable. But knowing a more precise prognosis will depend upon biopsies of the margins and lymph nodes. If these are clean, it is much better. There isn't a lot of published research out there on whether chemo or radiation help. Some of it is contradictory. It is just such a rare cancer.<br />
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Whatever issues I have with my mother, I just cannot imagine her not being there. There was a time when I thought that 74 was old- now it seems so young.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-26040320571249892652015-07-26T19:16:00.000-04:002015-07-26T19:16:07.319-04:00Hard weekendI had a couple of upsetting things this weekend and wound up paralyzed, getting nothing done other than a load of laundry. And just now I had an upsetting conversation with my mother, and I want to turn off emotionally.<br />
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I believe in alternative medicine- I really do. But it isn't always enough. And when you need surgery, you need surgery.<br />
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My mom sort of believes in alternative medicine- but I really think it is more of a way of rebelling against conventional medicine rather than a full understanding of the alternatives. And she is rebelling right now. I had called to tell her that curcurmin was good to take- that is has been shown to increase apoptosis of cells in bile duct tumors. Although I didn't know if she should take it now or wait until after her surgery.<br />
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And then she started going on about all the second opinions she wants- not from oncologists or surgeons but from alternative people. She is not sure about the surgery. She does not want to be pushed into this, rushed,etc. And allopathic medicine is out of date, there are better things out there that can strengthen her whole body, etc.<br />
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She doesn't know how lucky she is that this tumor is resectable. Most aren't. What is true is that, even when they take it out, more people than not will have a recurrence somewhere else. But if they don't take it out she will be jaundice again in a few weeks.<br />
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Yes I do think she should have a second opinion. This is major surgery with a long recovery. Is it needed? And is she really a candidate for it- is it really resectable? Or has it already spread too far.<br />
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I should never have gotten my airline tickets this far in advance. I don't know if the surgery will take place as scheduled. And I just can't think about it. My mom is very stubborn and rebellious, as well as suspicious, especially when it comes to the medical establishment. I can't make her do things she doesn't want to do, she will just get more stubborn. I have to step away.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com1tag:blogger.com,1999:blog-79861699919631405.post-47832395473937704172015-07-22T20:01:00.002-04:002015-07-22T20:01:59.267-04:00Waiting is the hardest partMy mother had her knee surgery today and it went well. Now on to the next surgery, the Whipple procedure- but that isn't until mid August. The surgeon wants my mother to get strong before the procedure and be in good shape going into the surgery. That is well and good, but I might not survive until August 17th. I just want the cancer out of her. And I want the answers that won't come until after the surgery- namely, has it spread. Is this cancer going to kill her, or will this surgery be a cure?<br />
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Meanwhile I continue to feel like I am going to collapse. I had been attributing it to stress- but now I think it is low blood sodium. It explains the headaches, the lack of concentration, nausea, the occasional muscle spasms, as well as the fatigue that makes me want to go to the ER- but takes so much energy away from me that I can't even call my doctor. I think I have been eating low sodium recently, drinking too much water between the lithium and the hot weather, plus Effexor can cause low blood sodium, and my IBS has been really bad so I have been losing fluids and possibly sodium that way.<br />
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So I dragged myself home and have been trying to eat salt. If I don't feel better soon it is probably something else.<br />
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And of course I am on the internet looking up bile duct cancer. I have to stop it. I'm no longer learning anything new. And it is so rare that there isn't even a whole lot out there. I didn't even know you could get bile duct cancer! I mean, sure, you can get it anywhere- but I had never given it a thought. I've had my breast cancer scares and I have been on my mom's case for not getting colonoscopies. But I never worried about bile duct cancer. It makes you wonder what is around the corner, and if it will be anything like what we are preparing for.<br />
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<br />Jean Greyhttp://www.blogger.com/profile/13826037279061710386noreply@blogger.com0