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 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.

you can try the best you can. if you try the best you can, the best you can is good enough

Tuesday, 03/07/17, 9:38pm, 1:43pm

Well, yesterday's post was all hopeful and feeling like I'd had a turning point in getting better. I guess it's only inevitable that this morning, the depression hit hard and I'm just feeling incredibly stupid for having hoped at all.

I hate days like today. Days where I feel so incredibly small, so worthless. Days where I just want to be done. Done with everything- with life, with depression, with anxiety, with being a mom, with responsibility, with expectations. It's really hard to have those thoughts of despair, yet I know I have no option there other than to persist forward. I have to keep trying- for my kids, for my husband, for everyone who loves me, for future me.

It's always difficult to write a really downer post. One full of my real thoughts of despair, in the moment. Maybe it's not something that's the best for me to share about with anyone and everyone, but then I also feel strongly that it's critical to share this stuff. Because what if there's someone else out there who has these feelings too? But they think they're alone because most writers of depression share after the fact. And we're expected to express hope the strongest. I found out yesterday about some guidelines for writing about mental illness from NAMI, the National Alliance on Mental Illness. Now granted this is for when you're representing NAMI, which I don't profess to do. At the bottom, they mention specific words or phrases to avoid. Including, contrary to my personal belief, the word "suffer".

From the site:
Suffer. Although there are times when a person is suffering, we avoid it when it discussing mental health. We opt for more hopeful language that is forward looking. 

I see where they're coming from, but gosh, I've used the word suffer in my blog way more times than I can count. And to me, I think this is incredibly ignorant to try and rub this word out of our vocabulary. In fact, many people DO suffer from mental illness, regularly, just as people suffer from physical illness. Why should we pretend that this isn't a major component of mental illness? By only focusing on the hope, you invalidate what people are suffering. For me, the focus on hope and people constantly telling me to "think positively", "you gotta hope for the future", etc, worsens the self-stigma I put on myself. When I'm not feeling hopeful, I feel guilt and shame over it. Hope doesn't fix mental illness. Sure maybe it can help to change your outlook on life which may improve mood, etc, but hope for me is a double-edged sword. Hope destroys me when I do suffer because 1. How dare I give in to the suffering and not keep hoping? and 2. Here I thought I was doing better/will get better and that hope misled me. It made me think that if I just hope and think positively, this will all go away. But nope, it doesn't.

And the constant proof that things that are supposed to help me, but don't (you know things like medication, and therapy, and TMS), crushes that hope over and over again when I keep not getting better. And it makes me question whether or not I really have a disease. If it can't be fixed by all these things, then what's really going on? Is it just that I'm a screwed up person who fails constantly in life? But then we have concluded that I have "treatment-resistant depression," so my "not a disease" logic shouldn't stand.

My therapist recently noted that I seem to fight my diagnosis. I suppose I do. I question it, I self-stigmatize, and I shame myself over my depression and anxiety. And I can't seem to figure out how to stop doing it. I write about the problems with mental illness stigma, and yet I do it all to myself. What the fuck is wrong with me???

It's the depression. It's the illness. It's the brain disease (another word NAMI doesn't want us to use), but it absolutely is that. And although TMS might not be helping yet, there's still time, and hope, really. And please remember, this treatment will help (or not help) regardless of whether or not I hope. I keep going to treatment, I keep trying; isn't that enough? Sometimes I hope, and other times I despair. That's doesn't make me a failure at life, it simply is a side effect of my illness. I'm telling you all this, also in the hope that saying it over and over again will change my own personal views and stupid stigmas.

I wrote most of the above this morning, and although I still stand by all I said, I am feeling a teeny bit better now. Today's TMS appointment went pretty well; talking with a friend present and the technician makes the appointments go by faster and seemingly, less anxiety-inducing.

I feel less despair now, but I know those thoughts aren't far away. They've been close and intrusive for many months now, and I'm ready for that to improve. Whether it's TMS, or attempting medications again after TMS (because some people do respond better to meds after their brain chemistry changes enough from the treatment), or maybe someday I'll even try ECT, but <shudder>, I don't ever want it to come to that.

But regardless of whether or not TMS works, I've been dealing with all this for like 8 years now. I suppose I have shown that I do persist in the face of these challenges, with every day that I get up in the morning. Even if it feels trivial in comparison to what I view as failures.

I know it probably seems like I've been bashing NAMI for the guidelines they've posted, but really I do understand the reasoning behind it, and I know they want to be careful that they aren't triggering people with what they share, and there's a fine line between helping and triggering when it comes to mental illness. And NAMI does so much to support individuals with mental illness and their families, they serve to educate and advocate, and they mostly do a great job doing so. I do feel that some of the choices they made about the latest guidelines aren't considering some of the greater harm they might be doing towards those of us who do suffer, on a regular basis.

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...