I look at the world and I notice it's turning, while my guitar gently weeps, with every mistake we must surely be learning, still my guitar gently weeps

Saturday, 05/12/18, 11:06am

Well I guess I'm really becoming a once-a-month blogger. Ah well.

This last month has been decently good, emotionally/mentally speaking, and we keep spreading treatments out more and more. This stretch I'm currently in is 4 weeks. Man, what a difference from the once every week time (which I think lasted a bunch of months), and then of course the 3x a week. The doctor had said, post acute phase of 3x a week, that the maintenance phase would be 6-12 months. I think I'm gonna end up longer than 12 months anyway, though that's not a bad thing and nothing to be ashamed of, but I think that I never felt like once a week was really "maintenance". To me that was more like a second phase of the treatment that was still fairly "in the thick of it" treatment. Now, with the spreading treatments out more and more, feels more like "maintenance" to me. Eh, whatever. Labels aren't exactly important.

So despite the overall "better and better", those bad days, moments, weekends, weeks still hit, and seemingly just as hard. Yesterday and today, so far, have been down in the hole despite an exceptionally good week this week. I managed really well with more evening kid responsibility due to some later work stuff that Nasser had a few of the days. I handled fights/complaining/etc with kids with, what felt like, more patience than I used to. I kept feeling more and more proud of myself. And I got in the pool and did my first bike ride in a really long time. Maybe it was the high hopes of getting back into an exercise every day routine kind of thing, and then not feeling able to yesterday, that brought me down. And I know that thoughts around tomorrow have been feeling like a big trigger. So. Yes, tomorrow is Mother's Day or whatever. Which has some of its own expectations or something. But tomorrow is also the 2nd anniversary of Adam's death. (As my longer term readers may remember, Adam is Nasser's brother who suffered from schizophrenia and was hit by a train and died the night of Friday, May 13th, 2016). I'm not actually going to spend much time discussing Adam today, not because I don't want to, but more because I'm scared that doing so or doing too much of it will just bring me down further.

I suppose that every down period for me has a trigger(s), although originally when it hit yesterday, it kinda felt like the depression just crept in and took over without me realizing it was there until it was too late. I mean, I guess I shouldn't say "too late" because it's not like it's ever too late. I recover and get through these down periods. But during them, it almost always feels like I never, ever will. I turn to the thoughts of "I hate my life", "I'm never going to be better", "why do I even try?", "nobody cares about me", "I'm a failure", "I'll never succeed at anything in life ever again", "I should just give up", etc, etc. It's overwhelming, it makes me sob and sob, it makes me feel like all my lists of "things to do when the depression hits" won't actually help, it makes me crawl further and further into my hole without being able to see or recognize any way out.

But then there are those little, tiny things that maybe seem slightly better, like just barely show that maybe, just possibly, I'm fighting, you know, at least a little. So like, above, when I stopped myself in the "too late" statement. And last night, when Nasser was putting the boys to bed, I started feeling like it was taking him a long time. And I started going into the thoughts that maybe he was hanging out in their room longer because he didn't want to spend time with me. And maybe he doesn't really love me. But I had the brief thoughts of, "no, this is what the depression wants you to feel. this isn't actually real". And after thinking that last night, it didn't like pull me out of the depression, but I guess it was kind of a start. Nasser told me that just having those little thoughts that fight the depressed thoughts is HUGE. It may be baby steps, but it's in the right direction.

A couple weeks ago, when I was in a bad state for a few days, I printed up all these mental health stuff that I had found on Pinterest, of all places. I had made myself a board called "for me" and filled it with these little pictures with good motivational, mental health related quotes. Then with all my printouts, I put together a bunch to hang up in my bedroom. This was the end result, that I'm currently calling my "wall of strength".

To me, they are all wonderful in so many ways, and I so want to blow them all up in this blog for you to see. I have a couple though that I'm picking out to draw your attention to.

They all totally make me tear up and choke up and yet, all in a good way. Like they give me strength every time that I see them. I am trying, I am always trying, even when it feels like I'm not trying or that I'm going to fail. I keep taking those steps to move forward. And even if this fight will never really end, for as long as I live, I am always trying, I am always fighting for those good moments/ days/ weekends/ weeks/ months/ whatever. I am fighting for those I love, I am fighting for those with their own fights, I am fighting for those who have lost their fight and have gone on to whatever lies beyond, and I am fighting for life itself.

This year, we are doing more of a Mother's Day celebration for me today, rather than tomorrow. Nasser made chocolate, chocolate chip muffins this morning, per my request. And we're basically doing whatever I want today, even though the depression has made it hard for me to figure out if there is anything I do want. We are going to the pool this afternoon though, and I think lunch and dinner are all up to me. I wanted to make today a substitute Mother's Day in some regard because it felt really conflicting to try and figure out ways to honor Adam tomorrow and yet also do Mother's Day activities. And then I'm also working on removing my expectations of a "perfect" Mother's Day and the "perfect" way to honor Adam, etc. I need more accepting in my life and less expecting. But then, baby steps.

but she wants to be sure, 'cause you know sometimes words have two meanings

Friday, 10/27/17, 8:50am, 10:33am, 11:26am (hah, again, my birthday time- 11/26)

Today's not the best day, depression-wise. It started last night, with a conversation with Nasser about my therapy appointment yesterday and how I'm doing lately, generally. He's had, well, a different view/opinion of my mental health of late than I have. We both certainly acknowledge that I'm doing much, much better than I was for the last year, mostly since Adam died. But he was saying, compared to two years ago, three years ago, four years ago, he doesn't know that I'm any, well, happier per say.

Three years ago, four years ago, "ish" because you know my memory completely fails me now, I was biking to work every day. I was doing triathlons, various running races, I was much more active.

I told Nasser last night that I'm having trouble getting back into my active state because I'm currently so out of shape. When I do exercise, I feel like crap, at least during. I sweat, a ton, it's hard to breathe, and I want to and often do quit early. And then I beat myself up for "failing". And I can't seem to get past all this, to exercise really regularly again, in order to get back into shape. I have no interest in dieting to lose some weight, which would probably make exercising easier too. And I don't know what the underlying problem is. Nasser thinks I'm not doing as well as I should be, which means maybe we need to talk with my psychiatrist(s) more about medications, and there's this whole genetic testing we recently found out about which can be used to better understand interactions with medications. We even have a test kit, given to us by the ECT doctor, but I just haven't gotten around to it yet.

Today I'm feeling like the depression is all-consuming. Most days I can function pretty well and get stuff done or at least poke around on the internet, passing time. But I might not be "happy" because a lot of the activities that make me happy have been really difficult- exercise and reading books to name a couple (I can't figure out if my brain is simply cognitively not there yet or if I haven't had the motivation to read, neither reason makes me feel too good). My lack of memory has made things difficult, in many ways. I just picked up a book from a series that I really enjoyed not too long ago- the Wings of Fire series- and it pained me to recognize some things, like characters' names, but not remember the majority of it. And I get it, there have been plenty of jokes, that I've made as well, about how I can read/watch things "again for the first time". After awhile, that doesn't feel too comforting anymore. And it certainly doesn't feel comforting when it's in the context of (not) remembering previous events with friends and family. It's just... depressing.

This morning, so far, I've been laying on the couch a lot, under a comfy blanket, mostly watching The Princess Bride, a good comfort movie for me. 

And maybe the fact that I do remember the whole movie (I can't even begin to count the number of times I've watched this movie across the entirety of my life) is comforting to me as well. Finding something I remember kinda helps. Yesterday morning I found myself rereading old emails between Nasser and me, before we started dating. I didn't remember all of it, but it was extremely comforting and gave me a lot of sentimental feelings. It was nice.

I'm feeling a little bit better since writing the beginning couple of paragraphs, which is a good sign. I washed/wet my hair in the sink so that it's a little less bedhead, I brushed my teeth, I had another cup of coffee with a nice chocolate biscotti, and I'm getting to some exciting parts of my movie.

"Have fun storming the castle!"

"Think it'll work?"

"It would take a miracle"

"Good-BYE!"

Oh, another thing I did, was start a 7-day mindfulness exercise in this app on my phone- "Calm". I think it's a fairly popular mental health/mindfulness/meditation app that's out there. There's a 21-day practice in there too, but I figure if I like the 7-day one first, I'll try out the next one. Maybe this will be a good practice I can do on my own to improve my, well, everything. There were several things my therapist gave me yesterday in my appointment to work on, and I think this app will help with some of them. 

There was another thing we talked about in my appointment that I did attempt to put into practice last night during that difficult conversation with Nasser. We talked about my ease into the thought "I want to die", almost like it's a habit. When I get super depressed, this thought does come up rather often, rather easily. My therapist suggested I try and start challenging these thoughts. To try and recognize, in the moment, that this thought doesn't actually mean I want to die, but that I'm looking for an escape from how I feel in that current moment. 

Last night, I was fighting an incredibly strong urge to sob at one point and had these overwhelming "I want to die" thoughts. And I was able to remember what my therapist said and I did what she said. And I felt slightly better. What she said worked. It at least stalled or stopped the "I want to die" feelings even if it didn't totally avoid the tears. Of course, hopefully the more I practice this, the easier it will get.

This week has been difficult for a few reasons, other than the stuff from last night and today. Tuesday I started going through my closet and emptying out the things that no longer fit. My increased weight has made a lot of my clothes too small. This doesn't help my depression by any means. (Of course my therapist yesterday reminded me that doing this wouldn't put most people into a good mood). I was super productive Tuesday and Wednesday with this task of taking out the clothes that don't fit, which I think will help in the long run to not constantly be looking at these too-small clothes and feel horrible about it every single day when I'm trying to find something to wear. And the productivity helped me feel good about myself in a different way. In the same way that completing a bunch of laundry yesterday made me feel good about myself. Doing tasks around the house, getting started and making progress on house projects has made me feel better in the last few days, and it did (prior to last night and this morning) make me feel like I'm on the mend. 

Maybe I need to be careful about expecting too much, too quickly. Maybe getting to that regular working out and in shape state is just going to take lots of time, and expecting myself to work out everyday isn't yet a reasonable expectation. I am still more active than I was during much of ECT, and I'm getting better at these cycling classes, even if I do, on average, only go once a week. We already made plans for me to be able to go tomorrow. And maybe treatment every 2 weeks is still too much for my brain for reading books. Maybe I need them a little more spread out to cognitively handle it. And maybe that's a little worse than what's average/normal for most ECT patients, but I should discuss it with the doctor before deciding that it means something's wrong with me.

And it's not that Nasser thinks I have things "wrong with me." He's trying to make sure we get to the best possible outcome with my treatment(s), including all the medications I'm on. I think I really took it personally last night, thinking I'm failing because I'm not as happy as he'd like to see me, compared to times that he has seen me really happy in the past.

With my movie over now, and having moved on to Pandora and my "Shine On You Crazy Diamond" station...

... I'm feeling more... reflective and understanding and willing to see room for improvement rather than failure. My underlying mood affects that willingness a lot. And sometimes it takes a lot of work to change that mood, sometimes it takes hours and hours. But it's good to be thankful that it doesn't take days or weeks like it has in the past.

As a final side note, I did some Halloween decorating yesterday, after having previously decided I'd skip it this year. The kids liked it and enjoyed helping decorate more.

this is the sound of all of us, singing with love and the will to trust

Saturday, 10/21/17, 12:54pm

I felt the first twinges of depression when I was a pre-teen, middle school/ junior high -ish age. I can't remember exactly. I do remember that I felt lots and lots of suicidal thoughts then. It was often, probably almost continuous, and something I didn't tell a single other soul at the time. I simply thought I was screwed up, I was wrong and different, and I certainly was nowhere near normal.

Today I felt a rush of those feelings I felt as a pre-teen come back from a video I watched. It was this amazing 7th grader delivering a poem she had written about the societal pressures on girls and coming to terms with "you are good enough". It's worth a watch.

In watching her poem, I was reminded of how alone and wrong and awful I felt at that age. I was reminded of how, when my hormones calmed down or whatever, in high school and college, I pretended like that part of my life had never happened. I still didn't talk about it, I still had no idea how I had "gotten over it" or whatever, and I probably just embraced the stinking stigma even more. Perhaps it's part of the reason my depression hit so hard the second time around. Perhaps it's part of the reason I was/am treatment-resistant.

My mother-in-law is in town this weekend, this is Adam's mother of course. She has become even more involved with NAMI and such since Adam's death, and she was telling us about this NAMI conference she went to in Chicago this past week. She attended the keynote on suicide prevention and was telling us about what she'd learned. It was so... touching/moving/tear-jerking to hear about some of these things that are known and taught and are, from my experience of feeling suicidal at many points in my life, so right on. She talked about how the biggest deterrent for people from acting on their thoughts is thinking they won't succeed. (So true).

She also talked about a man who spoke to them about having survived a suicide attempt of jumping off the Golden Gate Bridge, I think one of the ones in this story.

Here's the video of the one man telling his story, also worth a watch (whew, personally sobbed through this one, big time, but again worth.the.watch.):

Sorry, dear readers, that this is such a heavy, heavy blog post. It's important stuff though, stuff that I think I tend to gloss over more often than not. And even though I'm doing so, so much better than I was just a few short months ago, it doesn't mean that all of this is gone. The depression that hit about a week and a half ago was hard. And not devoid of these thoughts. I think that I had had these really high expectations, since "getting better" from ECT, these expectations that I'd never feel the "I want to die" thoughts again. And maybe that's why it hit as hard as it did that day. Because I had convinced myself that I'm too much better for those thoughts.

I don't really know what recovery totally looks like. I know that I have a lot more good days than bad these days, LOTS more. So I consider that recovery. I know that typically when depression hits now, it's not as hard as it used to be. So I consider that recovery. But I guess it probably doesn't mean that it will never hit as hard as it used to. And that can still mean recovery.

I've never acted on the "I want to die" thoughts. I've never cut myself, or attempted suicide. I suppose that doesn't mean that I never will, despite the recovery. But surrounding myself with people who love and support me helps, and keeping up with mindfulness/meditation activities helps, and seeing my therapist and psychiatrist regularly helps, and continuing to find new and extra ways to help helps. The battle never really ends, and I can never really be, well, off my guard.

But that can still mean recovery. And I can still revel in that.

To finish, some fall colors from yesterday's run attempt, which turned into a walk to finish. And some yardwork to get ready for the big town compost pickup this morning. And TK's last soccer game.

Oh and one more thing. Today is World Singing Day, which we didn't attend the event in Boulder for it today, but I still hold it dear in my heart. I am not doing choir this year, because of treatment and getting better and all that, but I do miss it in so many ways, and I miss regularly singing, even though I've picked it back up for boys' bedtimes again more recently.

and all this time, thought I was in control, but fate she held her own

Friday, 10/13/17, 7:21pm

Oi. Well, yesterday afternoon/evening and today evening have both turned out to be not so good. Honestly, I'd had quite a streak of good days, even longer with only a few "meh" days mixed in, but days since a true depressive episode... it's been like 2.5 weeks. I had to check my mood tracking app- Daylio- to figure out when it was, because I couldn't remember. Oh and since the beginning of September, I'd only been having one bad day at a time. It's been awhile- over a month- since having this happen two days in a row.

Although, I should take a step back. It hasn't been all bad days today and yesterday. Yesterday I had a really good morning/early afternoon with friends, helping one of our friends get ready for a full year of traveling with her family (woah!!), and the bad mood didn't hit until later in the afternoon, after a large argument with the kids. I lost my patience with them, I reneged on our plan to go outside because I felt like they weren't listening to me (big surprise there right, with kids? though at the time I just felt like a complete failure because I haven't done much parenting in awhile- between treatment[s] and lots of depression, etc), then it just felt like a big screaming match with a bunch of crying in between. Finally I gave up, let them watch a show, and hid upstairs in my bedroom to cry more and feel like a terrible parent/person.

This evening isn't nearly as bad as yesterday's big big depressive episode. That hit... hard. Really hard. And it lasted pretty much the entire evening and I only got slightly better before going to bed, although I still wouldn't call it a recovery by any means. And maybe some of it being so bad was the fact that it had been awhile. I was certainly being really hard on myself with the parenting stuff, but it's also hard not to be when I haven't been doing it regularly.

Today during the day was pretty good. Kids had off, as did all their cousins, and we went with most of them to the science museum in Denver, which was fun, but fairly crowded. I actually think I did rather well, parenting wise, today with lots of stubbornness at various points from both kids, but especially from TK. But then at TK's soccer game, I mentioned to Nasser that I think really packed days might not be the best thing for me right now, like I think I'm having trouble handling that and really need more me time during the days. I was feeling more on edge, although not triggered truly yet. What really felt triggering, after dinner, was an argument with Nasser. Obviously, I hate arguing with him, and thinking about it now, after spending time typing away, I feel much more relaxed and think I could probably talk much more calmly about things with him. But before starting the blog tonight, I told him "I'm done, I'm going upstairs."

I am worried though. I'm worried I really can't handle busy days. I'm worried because my next treatment is on Monday, and the doctor had warned to watch out for any major deterioration the 3-4 days before treatment, and now of course I have these bad afternoon/evenings suddenly exactly 3 and 4 days before treatment. I'm worried about Nasser's business trip next Wednesday and Thursday. I'm worried about my parenting skills. I'm worried that the only reason it feels like I've "gotten better" is because I've been so hands off with parenting for so long. I'm worried about my ability to handle anything really, including just generally... my life.

There's all these things I want to improve about me, about my life, about my parenting skills, and really we own a bunch of specific books that address many of these things I want to improve (at least like 4 or 5 or so that have been on my list for some time). And yet I still haven't gotten myself to sit and read. Maybe one issue is I don't really know where to start. And I'm still afraid of my cognitive ability to actually do it. Then I have treatment on Monday and I did notice with my last treatment that I had some of the short term memory loss again in the days surrounding treatment, so I feel like I need to be careful with that as well. It's... hard... really hard. It's hard to not be able to do all the things I want to do, many of the things that I feel would help. I mean there's the whole exercise thing too, right? I'm so completely out of shape right now, that everything I attempt feels really hard and really... just... confidence bursting.

Maybe it seems like I'm just coming up with excuses. And maybe I am doing that because I'm currently in a bit of a hole. It's not like I want to be here. But, sadly, my depression isn't completely gone, despite however much better I have gotten. It's hard to be hit with it again after quite some time, and to feel, I dunno, really shocked by it happening again or something.

If this does last the next two days, then it will be a big thing to talk about with the doctor in terms of treatment frequency. We'll figure it out, and clearly he mentioned it as a possibility, so clearly this is something that happens to people. I shouldn't (and I will try not to) feel bad about this happening. It's just... I hate to feel like we're taking steps backwards. I really don't want that.

I will briefly note that today is Friday the 13th. Unfortunately, it's no longer something I can get excited about in any way over the creepiness or whatever of this day. Adam was killed on a Friday the 13th. So it's forever going to feel sad, bad, and ominous (but real ominous, not silly ominous).

Anyway. I will try to end with some happier things. Some pictures from our museum trip, again with only most of the cousins. The missing two were next door at the zoo, but we didn't end up seeing them at all today. (PS- after writing and adding the below, I do feel a bit better).

Starting with some fun pictures of the five of them outside the museum...

The three youngest cousins, including TK, playing in the space exhibit play area, and walking together, super cute. TK is the youngest of the three, but he is within 5 and 6 months of the other two.

I got a pic of the five cousins plus my sister and brother, all checking out this satellite table that you can move around to different areas, plus zoom in. So we found all our houses on it.

At the Expo for the Denver Rock n Roll Half Marathon (plus other distances but the people I know are doing the half. I'm not doing it- are you crazy??? We were there for my sister and brother to pick up their packets). This is what happens when you tell five kiddos between the ages of 6 and 9 to "pretend to run". They each have a different interpretation of what that means. Super, super cute.

With the Geico Gecko, because of course. They all got these neck gaiters for free at the expo and then wore them the rest of the time because they all thought they looked super cool.

well I know what's right, I got just one life in a world that keeps on pushin' me around, but I'll stand my ground and I won't back down

Wednesday, 10/11/17, 7:56am, 9:15am (and Tuesday, 10/10/17, 12:51pm, 1:46pm but I just couldn't get myself to finish it)

Do you know what? I have written 196 blog posts. That feels... crazy/ridiculous/maybe overkill?, to me at least. My "blogiversary" is coming up in less than a month- November 7th- and I'll have had this blog for two full years then. That doesn't seem very long, although it does feel like a lot has happened, emotionally speaking, in that time.

It's weird, looking back at some of my earlier posts, and emails to friends and family, sharing my blog. There was a lot of "I've figured out how to live with my depression" attitude. I'm not entirely sure if I was truly doing much better back when I started the blog; I mean it was before Adam's death and I know that triggered me quite a bit. But then, last November my psychiatrist diagnosed me with "treatment resistant depression", which was really a reflection of the bunch of years prior to that, not simply those few months. And as many of you know, if you've been following along with my blog, or my facebook, or just me, I've been doing much better, as of late, after going through 5 weeks of electro-convulsive therapy (ECT) acute phase (as in 3 treatments a week) and getting to a point of going every 2 weeks for treatment during the maintenance phase now. I'm also on some medications, and going to therapy regularly again (I quit going for a little while during the intense and very regular ECT treatments due to the short term memory loss), and I've gotten a lot of support from many different people, so really it's everything working together.

I've shared some about my "state dependent memory" loss, but there was a bit more that was hitting hard yesterday. I was going through old emails of sharing my blog, and the responses back and forth with various friends and family about it, especially with people who felt able to tell me about their own struggles, after I'd shared about mine. And it pains me, a lot, to realize I'd lost some of the memories of who else out there struggles. It's not like I necessarily discuss our shared illness regularly with most of these people, but I hate that we had these very personal emails about it that I simply don't remember. Thank goodness for emails saving and being able to look back on them, right? As Nasser reminded me this morning, looking back on all those, remembering all the people that share this illness or something similar with me, helps to remind me of how I'm not alone as well as why I share, most especially in the hopes that it helps others who struggle.

It's hard having memories that are just gone though, with no control over that. I guess I just need to keep reminding myself that it's just a sign that I really am doing much better.

I recently discovered a writer on the internet, who I'm a little obsessed with. I discovered her on Quora, where she's answered over 550 questions... woah. I have actually linked to one of those answers (hers is the top one here) before... to the question "Why do people suffering from depression always call their struggle a battle? What exactly are they battling?". Turns out she has a website, and she writes about all kinds of stuff, but I've been most intrigued with her posts about mental illness/depression. I really appreciated her post on helping a friend with depression. I've tried to write about this at times, but I think she writes a whole lot more eloquently than me. So I urge you all to check out her writing.

So this morning I opened up something like 5 different tabs on my Chromebook for "Couch to Half Marathon" training plans. I've definitely gained a lot of weight in the past... 4 months? 6 months? 12 months? more? It's been... needless to say... frustrating? embarrassing? confidence busting? And it shouldn't be. I don't, hopefully, judge others who weigh more than they want to or whatever. We are who we are. And it's so much better to embrace who we are. But I'm not very good at that... as probably most people aren't as well. It certainly bugs me that a lot of my clothes don't fit well or right or at all, but it definitely bugs me more that I haven't been able to run more than 1 and 3/4 miles yet (because it's so low, I have to count by the quarters!), I get winded really easily, I can't hold a plank in yoga for more than a couple seconds, the cycling class I've started going to with my brother-in-law once a week has me sweating uncontrollably and I often feel incapable at going at the higher resistances or reaching the cadence goals. Mostly I want to be in better shape. I want to be in the kind of shape to be able to hike 14ers (14,000+ mountains), bike long distances, run a half marathon again, do triathlons again, and plenty more. I expect some kind of body shape will follow if I focus on those things, even if I don't lose all the weight I've gained.

I rolled my ankle 2 weekends ago, which hasn't helped my exercise goals/attempts. I haven't run since prior to that; unfortunately my ankle isn't quite feeling right still. Luckily I was able to book a last minute physical therapy appointment for later this morning to get help with the ankle. Hopefully that helps. Until I'm back to more running/walking, I'll be trying to focus on the cycling stuff, yoga stuff, hopefully more swimming stuff too. At least I'm exercising a lot more than I was for much of treatment, right? I gotta appreciate the little steps forward.

I'm going to finish off with some gorgeous fall pictures, mixed with the snow, as well as my boys playing in the snow on Monday. (Did I mention that our crazy Colorado weather brought us snow on Monday? It's all melted now and today has a high of 67 degrees. Gotta love global warming!) Oh and FYI, the snowman is holding his own snowball and sitting in the sled, because apparently he went sledding too? And... TK is wearing flip flops because... Colorado kid? He had taken off his snowgear already when I insisted on some pictures with the snowman, and flip flops were his solution. Of course.

in my place, in my place were lines that I couldn't change, I was lost, oh yeah

Wednesday, 09/27/17, 10:36am, 1:01pm

Hey there.

As usual, of late, you know, like the last several weeks, haha, we shouldn't put any kind of "standard" on my life of the past many months or years or anything like that... but "as usual", the week, since Monday, has been going rather decently well. Unlike the weekend was. This seems to be my life as of late, shall we say the last month-ish? Because as a quick reminder, I suffer from treatment-resistant depression, and anxiety, at least for like the last 10 years or so, with an additional bout of it when I was a pre-teen.

If you haven't read my whole blog, which I'm sure most people haven't, you may not know my history. If you want a better understanding of how my depression manifested, or just a reminder, read here. As many of my readers know, we experienced a big loss last year: my brother-in-law Adam, who had been suffering from paranoid schizophrenia, died on May 13th on May 13th when hit by a train. I think my depression took a big turn for the worse after his death, and I couldn't seem to recover. You know, speaking of which, I was so lost in my own "worseness" and whatever, I didn't even acknowledge the 1-year anniversary of Adam's death in my blog. In the years before his death, I was medicated for depression and anxiety, I went regularly to therapy, tried to practice various coping techniques at home, and I think I often convinced myself that I was "good enough". I'm not sure that I ever really was, even before Adam's death, but when medications worked, at least a little, it often didn't seem worth it to switch to something else.

Last year, November 29, is when my psychiatrist first brought up "treatment-resistant depression"; this was before he was quite ready to diagnose me as such but when we were going to try one more antidepressant as a last-ditch effort. My post about that, actually, describes my various medication efforts decently well. I've been re-reading old posts more today, hence all the links, mainly because of my memory issues from ECT. If we recall, I've got this weird phenomenon going on called "state-dependent memory", so it's rather difficult for me to really remember how truly bad I was before ECT. I think going through some old blog posts, especially seeing ones I wrote when I was in a bad state, or like when in one of the posts I described how 5 of the last 7 days have been shitty days.

That's not how I'm doing currently. It's changed... significantly... since ECT. It's weird, from that first time I'd ever mentioned ECT, hoping I'd never have to read more about it, to my description of the first treatment, and to writing 5-star reviews of my ECT place on Google, things have changed, just a bit.

I am much, much better. Although the weekends have been tough, over and over again, and this Sunday Nasser and I discussed various treatment changes, we discussed it at length with my long-time, primary psychiatrist, the one I've been seeing for many, many years now. I'd say, for sure, that he knows me, he knows my history, very, very well. Nasser and I, both, trust his medical/psychiatric opinion. When we mentioned the idea of trying a new antidepressant, he was immediately, like, "oh no, I wouldn't want to chase perfection." Because he sees how much I have improved, and really, we have a pretty decent idea of what we need to work on. It's the weekends- whether it's the lack of routine, or ridiculous expectations I place onto to-dos, etc, I do believe it's something we can improve, without changing treatment. It's something we can improve with the help of all the troubleshooting we're doing, with the help of my therapist, with the help of my doctors, and family, and friends. It's not something that feels like the end of the world anyway, because in strong contrast to how I was doing before ECT, I can, and do, improve and recovery within in the same day of dipping down into that depression.

Well. I think that's just about as much as I can handle today with this post. Sorry, dear readers, I am feeling a call and need to relax. Haha. Before I do, I'm going to leave you with a picture from my run on Sunday, the one that really helped me recover, the one in the rain.

Oh, and some pictures of my kiddos doing chores the previous weekend... because despite what I say about weekends being tough, they haven't been all bad.

I'll trip, fall, pick myself up and walk unafraid, I'll be clumsy instead, hold me love me or leave me high.

Friday, 09/22/17, 11:26am, 1:49pm

Hah. I know I've started a blog post (or two) recently at the same time- 11:26am. The reason I remember the time so well is it's also my birthday- 11/26 or November 26th- haha. I guess I get similarly timed urges to write on different days, or something.

Happy first day of autumn, everyone. I'm glad we're technically out of summer now, even if the weather isn't perfectly following, you know, due to climate change and all.

It's been a little while since I've written, at least compared to how often I was writing, but there's a reason for it. For awhile I had some trouble filling my time during the days; reading has been awfully difficult most days, even though I bring like the same set of books around with me to everyone's houses when I go and hang out with different family during the days. But then this week, well last Saturday actually, when I was having some depressive feelings, I recovered a little by restarting a Netflix show that Nasser and I used to watch some time ago, one that I really didn't remember much. So it's kinda like I'm watching it for the first time again. But that's been a nice way to fill up a lot of my time, haha. And really, this is a good time to be doing this, considering I am still going through this rather intense treatment, right you guys? Does everyone remember I'm going through electro-convulsive therapy, or ECT as we refer to it a lot of the time? Although, we are seriously getting the treatments more spread out, which is an awesome, awesome accomplishment. I don't know if accomplishment is the right word, but it does feel that way a lot of the time. My last treatment was Monday, this week, and my next treatment isn't until Monday, Oct 2nd, so a full two weeks apart! Pretty nuts, pretty awesome, hopefully it goes well. I'm getting much closer to coming off the 24/7 thing, I think, I hope. We have an appointment with the doctor next week, and I do want to talk about that a bit with him, as well as some of the memory stuff, in particular, the "state dependent memory" thing. Now, I know I mentioned this phenomenon briefly in this post, but I couldn't find it elsewhere in the blog, so I might never have actually explained this. Maybe I did, and my quick search just couldn't find it, but just in case, I'm going to explain it again.

So. I've been finding that I have lots of gaps in my memory over the past, well, bunch of years, like at least since I was diagnosed with depression after RG's birth. What the doctor has explained to us, is that I'm being affected by "state dependent memory". State dependent memory is (by Wikipedia's definition) the "phenomenon through which memory retrieval is most efficient when an individual is in the same state of consciousness as they were when the memory was formed." So we hear about this when it comes to alcoholics or drug users the most, but this applies to things like depression, as well. So I formed a LOT of memories over the past many years in a state of depression, and now that I'm much, much less depressed than I was (which is, of course, a good thing), I have lost a lot of those memories. It's... confusing. The last year, since Adam's death, has probably been especially worse. His death seemed to trigger me a bit further than before, and there's a bunch of things from the past year that I just can't remember. It's overwhelming in some ways to just not even know what memories I'm missing to some extent. I had planned two friends' ski trips this ski season- one in January with kids and one in March without kids. Nasser has shown me pictures from both and talked me through the trips a bit to try and bring back some of the memories. The January one, while super fun, was just about completely missing from my memory prior to talking with him, most likely because there was an additional, super stressful aspect to that trip. Unfortunately the original house I'd booked for it was double-booked and our party ended up being the group that lost out, but of course the owner didn't tell me until the day we were supposed to be moving in to the house. I scrambled to find a replacement, which ended up having several issues, and I put all the blame and stress onto myself. All that depression and anxiety I was in for that weekend made it so that the "state" I was in while forming all those memories was a bit more severe than the normal stress I would have been under, and apparently the result was my mind lost ALL the memories from that weekend, like at first I didn't even remember the trip had happened. I still don't seem to recall any of a trip we took last fall to Tuscon, AZ for my brother-in-law's father's funeral, and we have tried talking about that one and looking at some pictures. It's kinda a scary phenomenon to have going on, and I'm hoping to get a better understanding of what to expect, what's considered "normal", how much we can bring back those memories through pictures and talking, etc, from the doctor next week.

I mentioned before that I'm having a hard time reading books, somewhat because of short-term memory issues still, but definitely some because of my cognitive side effects. Like my brain just has trouble processing stuff. And processing books seems a lot more difficult than processing a show. By the way, the show I'm watching is Once Upon A Time. It's quite fun.

Oh and the other thing I've been filling my time with more this week, is friend time. I saw something like four different friends this week, which has been a big increase from what it's been. Although I suppose the start of school has made a lot of people busier, etc. And we're still trying to figure out some routine and trying not to use any one group of people too, too often because I worry that people are just going to get sick of helping me or something, because that's how I think, even though I know I shouldn't. Anyway, seeing friends a bit more has been quite nice. As part of that, I've gotten a little swim in, twice this week, and it's been awhile, so it's been a nice change. I still haven't run since my one run (last week was it?), but maybe I'll get another in this weekend.

We have a lovely bbq planned in our neighborhood on Sunday, which I'm pretty excited about. It's always a nice event, and although it is supposed to be a bit cooler this weekend, I'm hoping the weather holds out enough for it. We've seen neighbors at the bus stops and around and such, but it's not like we talk to people all too often. So this should be nice.

So I know I mentioned how I'm "doing better" than I was, and it's weird. Because of my memory problems, I tend not to always believe that, especially when I do fall into a tougher state or whatever. This morning, with Nasser, I was a little bit triggered, but it wasn't, like, devastatingly triggered like I used to be, and I still recovered rather easily. Nasser can see the difference, rather easily, but I don't, oftentimes. He reminds me, though, which helps, a lot. He was reminding me this morning, how the recoveries I've made the past several times would never have happened before. This is all pretty new, really, since ECT. And that's huge. I can hardly remember the bit of triggering I had this morning, now. I feel good, after having met up with a friend, gone swimming, had plenty of coffee and talked to my brother-in-law a bit, watched my show, done some blogging. And hopefully, of course, this mood continues. But then again, I guess I am recovering much more easily than I used to. And that is really, really huge.

Alright, I am done for today, haha, partially because I want to watch another episode! Have a good weekend, all, and a good start to the fall season.

I believe that dreams are sacred. take my darkest fears and play them like a lullaby, like a reason why, like a play of my obsessions, make me understand the lesson, so I'll find myself, so I won't be lost again.

Monday, 05/22/17, 1:49pm, 3:28pm, 4:56pm, 6:20pm

Hello blog.

It's been so long since I've blogged and I've written so infrequently this year, that I feel lost in trying to find a way to write again.

It's been a really tough year. A tough many years. I thought it might be beneficial, for me, as well as you, any readers out there who've stuck with me, to do some recapping today.

I had a primary care appointment today with a doctor who only met me once, last fall, although she'd been assigned as my primary care doctor for several years prior to that. My primary care went to shit, probably at the point of going to college, if I really look back on it. I never had a regular doctor, and when I did have issues, women's stuff, prenatal care when it came time to it, tearing my meniscus and having surgery, and then later, psychiatric care, I always went to the specialist. I mean it always made sense to have my ob-gyn care done through an ob-gyn office. And then I wanted to be seeing a psychiatrist when it because obvious that I had depression and needed more help. I established a primary care physician several years ago after seeing a practice several times for colds/etc.

Anyway. She kinda scolded me today, as she did last fall, for not having primary care. And I'm now at a point that I have 3 psychiatrists at a time, we're reading my lab results ourselves because everything's been ordered by a different doctor, I have a therapist, a sleep specialist, now primary care, and you throw depression and anxiety into the whole mix, and suddenly it's too much. I can see why people stop seeing doctors and stop going to therapy and stop taking their meds and say, fuck it, I need to just figure this out on my own. The primary care doctor told me to consider reducing my sugar intake because I told her I haven't been good about that lately. Well yeah, it's no surprise that I'm eating more sweets, I've been fucking depressed for many years now, with little relief, great, here I am, making it worse with the choices I made, that my depression leads me to. (Sorry for the outburst. I'm frustrated).

Our mental healthcare system really isn't great. It's tough to get the care you need, in a reasonable amount of time, even with "good" health insurance. I can't imagine how tough it is with further road blocks.

So as many of you know, I was somewhat stable on a set of medications for some time before my brother-in-law, my husband's brother, Adam passed away last year, Friday, May 13, after being hit by a train. This was after several years of battling paranoid schizophrenia. Understandably, it was awful. The depression that hit me after his death, the loss of his battle with his mental illness, shook me to my core. In the fall of last year, it became apparent that the meds I was on weren't going to cut it. I tried several more in the fall and was finally diagnosed as "treatment resistant" in January. Over the course of 8 years I've tried at least 6 antidepressants, 1 anti-anxiety medication, 1 antipsychotic, and at least 3 off label drugs including ketamine. I've done years of therapy and continue to do it, I've tried vitamin supplements and yoga and mindfulness and CBT and diet/exercise and workbooks, I did TMS, we've continuously ruled out medical things and we're still working on the sleep thing. As it turns out the at home sleep study was inconclusive but gave reason to do an in lab study which of course can't be scheduled until July. Great.

And now, we're getting ready to start ECT. If you don't click the link, I'll give a brief explanation here, but I also do suggest reading what I linked. I'm planning to start ECT, or electro-convulsive therapy, on Monday, June 19. I'll be having treatments 3 days a week (Monday/Wednesday/Friday) during the acute phase of the treatment, which can last anywhere from 2 to 5 or 6 weeks. During the acute phase, plus two additional weeks after, I'll need 24/7 supervision. So, Nasser is planning on taking a leave of absence from work for much of the summer, and the kids will be in camps during the weeks. The procedure is done under general anesthesia, and they'll be passing electrical currents through my brain, which induce a brief seizure. The biggest and likeliest side effect is on short term memory. We don't know how bad it will be, but that's the main reason for the 24/7 supervision, and plus I can't drive. Oh and some memories made in the weeks or months prior to starting treatment could also be lost.

Oi. It's a lot.

I'm scared of ECT, but almost less scared of the procedure part of it than I was with TMS, strangely. I'm more scared that ECT won't work for me, because I know how that disappointment felt after TMS didn't really work, and ketamine didn't work, and I'm just so sick of things not working. But I'm hoping, at least a little.

We have this big trip planned. We're going to Alaska, by way of Seattle and Vancouver, then cruise with stops in Ketchikan, Juneau, and Skagway, then cruising through Fjords to Whittier, AK. Then we head to Denali, by way of Anchorage to get rental cars, and we'll do the 6.5 hour bus tour thing in Denali, staying at a nearby bed and breakfast. Did I mention we're doing this whole trip with like all my immediate family? My parents, my siblings and their families, and our little family. There's 16 of us, with 5 rooms on the cruise and at the bed and breakfast. I'm excited about this trip, and I'm terrified. I'm nervous about being around a lot of people a lot of the time. I've been avoiding people for some time, and maybe if you were one to judge you'd say that my behavior is contributing to the problem, but I can assure you, the depression came first. And besides, the depression actually is an effing disease, people, let's not stigmatize it more.

It's hard to share openly about my depression and anxiety. Especially because I've found little relief from many treatments. I don't usually offer hope, much, anymore, and sharing takes so much out of me lately. Sharing in person, whether it's with friends, or neighbors, or family, or my therapist, or another doctor, takes so so much out of me. And not everyone reacts or says the things I wish they'd say. I wish the world just had more empathy, less sympathy and pity, less judgement, more of good old fashioned putting-yourself-in-someone-else's-shoes. We're working on it as a family more, at least trying to.

So, I guess that's all I really wanted to share about right now. I'm hoping to get into the habit of blogging more, again, as I've been hoping for many months now, but we'll see. Hopefully I can at least get a few posts about ECT in, maybe one about Alaska before the treatment starts.

it could be worse

Tuesday, 12/27/16, 1:15pm

Sometimes a day hits that feels nearly impossible to get through. Sometimes it's a few days in a row. And sometimes it feels like months.

These last many months have been very difficult. Adam died in May, which sucked and still sucks and will always suck to whatever extent. We've been changing medications around since like September, which hasn't been going all too well.

Nasser and I have been talking about my depression, and the course of it over the several years. Certain things about it have never felt acceptable, considering the treatment options out there, and the treatments I've tried, both medicinally and therapeutically. The level of low that I get, like intensity, the frequency of my lows. We've tried to look back on the various medications I've attempted and said to ourselves, "maybe that one did work better than I remember." To be honest, it's probably more me that's been doing this than us. I think Nasser would prefer that we look less at the past and keep trying to move forward.

I've been feeling super ashamed about my depression lately all the time. I thought it was helping me to be more honest about it, like with the blogging, but it's also super difficult and sometimes oftentimes just hurtful towards myself. I expect, or wish, for my depression to be treated more like physical illnesses. I expect people to be forward about their support, and many are. But the overwhelming silence is hard. That's the place that breeds me coming up for reasons for why that is. Do people just see me as the weak idiot who can't control her emotions, which is what I fear about myself constantly? Maybe responses of "get over it" and "stop feeling sorry for yourself" aren't any better since those totally accept the stigma that it's all my fault.

The effing stigma. The effing self-stigma. It's like depression, and especially suicide, would be less prevalent without the stupid effing stigma. And most people out there don't get it. If there's less stigma, how do those thoughts of "I'm just a burden to everyone around me" breed anyway? I really wonder what would happen to our world if we all stopped stigmatizing those with an illness, mental or physical?

Just. Fuck. Sometimes, it's just fuck. The world is fuck. The stigma is fuck. This day is fuck.

Excuse my language. Had to get that out though.

Also on top of the effing depression today, there's the sad business of people dying. Like Carrie Fisher. Ugh. Death sucks.

and some just clap their hands, or paws or anything they got now

Wednesday, 11/30/16, 8:15am, 9:37am

I need to get out of this minefield of depression holes. And I'm working hard to do so, but it often feels like I'm not making progress.

And the thing that's making me most worked up this morning is some trolls on the internet. Sigh. Not important stuff, not worth getting worked up about, and yet I still do it.

More importantly though. I had a psychiatric appointment yesterday, on a really awful day depression-wise. We talked about my depression levels, we talked about the newer medication we recently added for anxiety, we talked about my mood tracking app which I've been incredibly good about, and we talked about what is an acceptable level of mood. We are trying one last antidepressant. One that is a different class of drugs than the others I've tried. It's a last ditch effort, one we don't believe has a whole lot of likelihood to work (enough), but we need to prove to the insurance company that we really have tried a good gamut of meds and we're ready to call this treatment-resistant depression.

Treatment-resistant depression.

I'm sure most people can figure out what that means, but for more of a definition, as per Wikipedia:
Treatment-resistant depression (TRD) or treatment-refractory depression is a term used in clinical psychiatry to describe cases of major depressive disorder (MDD) that do not respond adequately to appropriate courses of at least two antidepressants. 

As from WebMD though:
Some researchers define TRD as a case of depression that doesn't respond to two different antidepressants from different classes. Other experts say that a person needs to try at least four different treatments before depression can be truly considered treatment-resistant.


Interesting, no really clear definition and criteria for this. I think we're trying to be sure that we're following whatever criteria the insurance companies have, which is almost certainly on the stricter side.

For my experience, I'm currently on tries #4 and now #5 antidepressants. #1 for me increased suicidal thoughts, with little depression relief, #2 caused weight gain without enough depression relief, #3 was a branch into a different class of antidepressants, helped a fair amount but required adding an anti-psychotic to really help and eventually wasn't enough after Adam died, #4 is in the same class as #3 but also not enough relief, does very little (for me) for anxiety which is why we added a daily med for anxiety. Now #5 is another class of drugs, one in which I've not tried before. Some of the side effects could increase anxiety potentially, but hey, now I'm on the increased dosage of the daily med for anxiety, oh and I also have the increased dosage of the "as needed" anxiety med.

Jeez, I'm on a lot of meds. For reference, here's my daily meds currently, morning and night. My doctor actually apologized yesterday for how many medications I'm on. But it's not like it hasn't been necessary.

Let's get back to the treatment-resistant depression thing. So if we try this last antidepressant with little relief, then it's time for some more serious treatment options. The one my doctor would like us to try first, is called Transcranial Magnetic Stimulation (TMS). From the Mayo Clinic,

Transcranial magnetic stimulation (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven't been effective.

It doesn't sound nearly as scary as the other option. TMS would be an intense treatment though during (45 minutes a day in the office, every day, for a month) but has the potential to remove all depression symptoms, which of course, sounds incredible. But then, it's less likely to work for someone who has depression which has lasted for several years.

The more scary treatment option, which has had some good success, is called Electroconvulsive Therapy (ECT). From the Mayo Clinic,

Electroconvulsive therapy (ECT) is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses. It often works when other treatments are unsuccessful.

Honestly I knew very little about ECT before yesterday in the appointment, but it is terrifying enough that I am choosing not to read all about it until that becomes a more serious treatment option. My doctor told me with ECT, the treatment would be 3 times a week, for a month as well, but it basically takes you out for the day, obviously you can't drive to and from, and I would bet that I wouldn't be able to care for my children on those days. ECT has a common side effect of reducing memories made just before and during treatment.

Now, I know, I know, I may be getting ahead of myself in even discussing these treatments, but they were both discussed in rather serious detail in the doctor's office yesterday. I'm thinking they may not be too far off on the horizon, but again, I'll give this new antidepressant a fair chance. I'm two pills in only, but yeah the post antidepressant treatments are already scaring the shit out of me.

But we keep trying. Oftentimes Nasser is the only one of us who can hope for me; I rarely have that hope anymore when it comes to my depression. I suppose I need to expect that I will continue to live with depression, even if I end up trying TMS or ECT. If something works, it would be life-changing, but hoping for it can make my depression hit that much worse, when it inevitably hits.

Sigh, my hopeful message today is simply "we keep trying."

And some cute pictures of Buddy the cat to cheer us up a little. He really missed us when we were in Steamboat, although we had some awesome cat sitters checking up on him almost every day, and we missed him too. He gets a bit worked up when I wear long skirts apparently and wants to play underneath them...