to the mountains, I can rest there, to the rivers, I will be strong, to the forest, I'll find peace there, to the wild country, where I belong

Saturday, 07/29/17, 8:14am, 9:55am, 10:47am

Well, it's been quite some time since my last blog post and I am now finally getting around to doing my Alaska post... I wrote up a summary of Alaska the morning I started electro-convulsive therapy (ECT), but that post has yet to be completed. Here we are, 5 weeks later, finally. Sigh.

And just for some perspective, we'll include the intro part of that post I wrote, for my pre-ECT thoughts...

"Holy crap, I start ECT today! 3 seizures a week time, for the next 2-6 weeks, right??? And Nasser is "24-7'ing" me since I require that amount of supervision.

I'm scared (in many different ways), I'm excited (in many different ways), I'm hopeful (for so many different things), and I'm anxious and overwhelmed. Last night Nasser sat with me, while I dictated to him this massive list of things to-do that were floating around in my head over the past several days. Including organizational things around the house, etc. Sigh.

I plan to blog as much as I can, but more importantly I plan to journal and use my daily app to keep track of things that I'm likely to forget, with the short term memory loss thing. I want to "remember" or be able to look back on this time as much as I'm able."

That was the intro part I wanted to include, but before we jump into Alaska stuff, I want to say that I have NOT been good about journaling so far, blogging has been rather infrequent, but I've been decent about using my daily mood app... there have been several missed days, but that daily app has been the most useful so far. About 2-3 weeks in to ECT, we started seeing some improvement, and now, 5 weeks in, I can more confidently say, we *think* it's working. Rather incredible thing, in fact. I actually didn't have treatment at all last week since we're starting to spread them out more. It was 3x a week for about 4 weeks, which meant that the cognitive side effects were kind of tough for awhile there, but have improved significantly this past week. Hence, I'm getting around to this blog post.

Anyway, let's go back a bunch of weeks, I guess it's about two months now... to the start of the Alaska trip. Our family flew to Seattle late the night of Wednesday, May 31st, along with my one sister and her family, a week after the boys got out of school.

We were only in Seattle until Friday morning before taking the Amtrak up to Vancouver on Friday, with the cruise leaving from Vancouver on Saturday afternoon. In Seattle, we visited with some friends of ours who have a new baby boy, we played in the pool at the hotel for the boys' sake (plus some of the other family started arriving soon after us too), but we also had to run some errands- we bought a new suitcase from Target since the one we brought broke- the handle wouldn't go into the suitcase- and I bought a new swimsuit from Kohl's since I didn't have something I was super comfortable with.

The Amtrak train ride was a great choice with the kids. We chose not to let the kids have screens, really, on the train ride, other than bits of RG reading The Hobbit on Nasser's phone and TK playing short spurts of brain-y games on my phone... a game called "Brain It On" which has you solve puzzle-type games and some "Solitaire". It was good, avoiding screens for most of the ride, since it meant that we saw lots of bald eagles along the way, we used the dining car to get some snacks for a portion of the trip, and the kids really seemed to enjoy the train ride and looking out the window. I spotted a couple sea lions in the water, at one point, on my way to the bathroom, which was pretty cool too.

Despite the nice train ride, though, I think we were all tired, grumpy, and likely hungry when we got to Vancouver. We had been hoping to meet up with another group of friends who live in Vancouver who also had a new baby we wanted to visit, this time a girl, but the kids were just too grumpy the rest of the afternoon in Vancouver, so we had to save that visit for Saturday morning, just before getting on the cruise. These friends also had several pets, which the boys really enjoyed visiting with, especially RG.

When we were done with our visit with our friends, we rushed onto the cruise and through check-in, a bit on the later side. But it meant that we had no lines, whatsoever, which we were pretty excited about, as were the kids.

Now, let's talk about the cruise a little bit... it was awesome. I mean, of course, there was lots and lots of eating; beyond the first night, we split up into a kids table and an adult table. Our group had 16 of us- there were my parents and 7 other adults between the siblings and spouses, and 7 kiddos amongst all the grandkids. Have I mentioned that amongst my parents' grandkids, there are only boys? Haha, yeah... so they really enjoyed having their own kids' table at every dinner.

The first full day on the cruise was at sea, but then our first stop was in Ketchikan, AK (06/05/17), where it, unfortunately, rained for most of the day. Some of us checked out a nearby wildlife type center where we could learn a little bit, in the safety of the indoors, before heading back to the boat.

There's our ship in the dreary rain...

See? It really was cold and wet...

RG, on the right, was especially upset about the rain...

We ran into my brother, sister, and brother-in-law going for a run in the rain!

I liked walking through this miniature park with flowers.

The next stop was Juneau, AK, and our little family split off and did our own thing that day- a quick trip to Mendenhall Glacier (where we saw a porcupine! I missed the picture of that one)

RG and TK posing by a bear in Juneau...

Mendenhall Glacier. 06/06/17

and whale watching (all these pics are credit to Nasser since my phone ran out of battery by the time we got on the little whale watching boat for that). Before I show you the whale watching pictures from Nasser, I'm going to include a picture he took of us at Mendenhall Glacier that day...

And he got a nice shot of a whale's back and one of a tail from the whale watching I'll share...

whale watching, 06/06/17

So then the next day was in Skagway, AK, where we took the famous White Pass Railroad. It had gorgeous views along the whole train ride.

These are the glacier pools at the top of the White Pass Railroad, before we headed back down the mountain, 06/07/17.

These are the 3 youngest kiddos, TK at right, is within 5 and 6 months of age of the other 2.

So Skagway was the last cruise stop, and the last two days of the cruise were cruising through Glacier Bay and College Fjords, lots of gorgeous, gorgeous viewing. Here are some pretty highlights from my pictures.

Above 4 shots from Glacier Bay, 06/08/17

At left: my boys hanging out on the pool deck; at right: some glaciers in College Fjords, 06/09/17

At left: RG being silly in front of glaciers; at right: more glaciers in College Fjords, 06/0917

and more beautiful glaciers in College Fjords, 06/09/17

Then the next day, 06/10/17, we had to get off the cruise, after a really nice week. I'll tell the story through pictures mostly, although, I have to mention, I had some serious "land sickness" after getting off the boat, so the travel that day was a bit tough for me.

At left: TK with some cousins as we're making our way off the boat;  at right: last shot of our cruiseship

Pictures from the tunnel between Whittier, where our cruise ended, and Anchorage.

Pictures from the bus ride to Anchorage, still 06/10/17.

More pictures from the bus ride to Anchorage.

I had to include this picture of my one nephew, AS, who has celiac disease. He's finishing up his bowl of full size pho at the Vietnamese restaurant we found in Anchorage. It's like when he finds something gluten free at a restaurant, he just gobbles it up. :)

We rented cars in Anchorage, three for our group, and made our way up to Denali National Park, where we had rooms rented at the Denali Touch of Wilderness Bed and Breakfast Inn, a really great place to stay at, and they accommodated my gluten free nephew at breakfast really well.

The next day, 06/11/17, we all went on an amazing 6.5 hour bus ride through Denali National Park. With even just the start, in the parking lot at the entrance of the park where you pick up the bus ride, we got to see a huge, huge moose and its calf, picture with the calf courtesy of Nasser.

And here's a bunch of animal pictures from the bus ride. Man, oh man, it was amazing. One of the coolest things we saw was a huge grizzly bear, on top of the caribou kill that it had apparently stolen from 3 wolves, and we got to see one of the wolves running away with a piece of meat from the kill.

grizzly bear on top of the caribou kill.

2 pictures above: wolf running away with some meat.

4 pictures above: mom and 2 older cub grizzlies we saw on the side of the road, the cubs made their way in the road to play fight. Super, super cool.

At the visitor's center in the park, we played around with the caribou antlers...

and then just some shots of my kiddos being silly...

and the 8 year old cousins in some footprints...

And then we have some bus shots...

my nephew, DS, fell asleep towards the end of that 6.5 hour ride.

Then we have some pictures from the dinner after Denali. We had some good portable, travel game things to entertain the kids while we were waiting for food.

Then, the next day, the very last day of the trip, 06/12/17, we had to leave the Bed and Breakfast and make our way back to Anchorage. I took a few pictures of kids in the car I was in, with the 3 youngest of the cousins. In the first shot, the 2 kids on the right were just pretending to sleep along with their cousin on the left who actually had fallen asleep, and in the second shot, TK was the only one still awake.

then at the end, they were all awake and happy and snacking.

and I had to share, we got a flat tire on the way back to Anchorage, and RG decided he had to help.

Several of us flew home that night, a red-eye to Denver. Funny little story: I got pulled aside in security and the TSA agent who searched my stuff knew the story of the wolves and the caribou kill, but he had heard from people on an earlier bus ride who only knew about the kill. I got to fill in the part of the story about the grizzly who stole the kill.

And to finish it up, I have a picture from the airport in Anchorage, sometime after 11pm... so crazy.

I'm tired of singing trouble to keep myself alone. somebody come and help me, lord to carry a heavy load

Wednesday, 07/05/17, 6:57am

Hi blog. I still haven't taken a blog post to tell you about Alaska, although I did a draft summary for myself since I'm worried about forgetting things from the trip. Cuz, yeah, the short term memory loss thing is, well, real. I think I didn't really believe that it would happen to me, then I was getting offended by jokes about it, and now I just realize that it's real. There have been a few occurrences over the last couple weeks I've simply forgotten- phone calls, conversations, things we've done. It's... weird, to say the least.

In general, recovery from the treatments (remember I'm doing ECT- electroconvulsive therapy) has improved from that very first day. So far, I think that very first seizure has been my longest at 145 seconds. I've had 6 now. We're still in the acute phase, going in 3x a week, but the office was closed on Monday due to the holiday, so this week, it's only twice. There's totally a routine every time now. I have to fast overnight beforehand, and I'm allowed clear liquids until 2 hours before. So depending on appointment time, I have my big tea with enough time to spare.

Then, once I'm done with that, I get in my shower and do whatever else to distract myself from eating and drinking. We go in, my assigned nurse for the day takes me back to the prep room where I get assigned a hospital bed. There's room for 3 or 4 beds in this area. They give me a couple meds beforehand, sometimes the nurse starts my IV (I can point on my arms to several of the different locations that's been), and I get wheeled into the treatment room when it's my time. Because yeah, they just wheel people in and out of the treatment room where the doctors hang out. Both doctors are psychiatrists, one is also an anesthesiologist. The anesthesiologist listens to me take a few deep breaths then finishes the IV. He administers a muscle relaxant first, which feels weird around the eyes, so I usually close them by that point. The doctor warns me that I'll feel a burning sensation at the IV site when he's administering the sleeping meds and then I'm out. I'm unaware of anything until I'm back in the prep/recovery room, usually not until I'm in a chair rather than a bed at that point. I guess the waking up stuff takes long enough that I'm not aware of moving from the bed. They're usually giving me ginger-ale at that point, and eventually they wheel me downstairs where Nasser will be waiting for me with the car.

Ever since the second treatment, we've been smart enough to bring a protein shake in the car for me to have on the way home. I'm usually, like, barely conscious for the car ride home, but enough so to down the protein drink. We get home, and I immediately go to bed for a little while.

I eat more real food when I wake up again. Sometimes take the strong pain meds that Nasser is in charge of.

We had a check-in appointment with the doctor last Thursday. I haven't really been improving so far, so we decided to switch to bilateral treatments (that's where they put 2 electrodes on my head instead of just 1), although this can cause more of the cognitive side effects. We also decided to add another med, an anti-psychotic I've been on before to act as a booster for the anti-depressant.

One really annoying side effect has been, um, well, constipation. I guess this is somewhat common, but it's probably due more to inactivity than directly caused by the meds they're giving me. Unfortunately this weekend, I got hit pretty hard with the opposite effect which was rather unfortunate because we were attempting to camp this weekend. Sigh. We decided a little ahead of time not to head up to the campsite until Saturday since I had that first bilateral treatment on Friday and we weren't packed up to go. It was fine that my stomach wasn't cooperating with the camping idea anyway because Nasser ended up taking RG to urgent care Sunday morning because of what ended up being ear infections in both ears. We ended up heading home Sunday afternoon so that he could recover a little before the boys had a flight with Nasser's mom to Chicago on Monday afternoon. They're doing "Grandma Camp" this week and she brings them back next Sunday. She takes the boys for a week every summer, but this is the first year she's handling both of their flights.

Sigh. I really hope I start improving soon here. I don't want to keep up the acute phase for too much longer, and I'm starting to get a little worried that it just won't do anything for me. Nasser is planning to start work up again this week... he'll be working from home 2 days a week, but only once this week due to the holiday. Really, it's a good thing that he'll be doing this, because this allows him to take the 6 weeks allowable leave and extend it to more like 8 weeks.

I'm very lucky, for most especially Nasser, but for everyone supporting us right now. I know that I'm incredibly lucky, but that doesn't just make me "not depressed" or something, unfortunately there isn't this direct correlation. It's frustrating, to me more than anyone, that it doesn't work that way. I just have to allow it to happen the way it will, I guess. We hope, continually, we hope.

we'll search for tomorrow on every shore, and I'll try oh Lord I'll try to carry on

Wednesday, 06/21/17, 6:44am

Well. I had my first ECT treatment on Monday, and I've got the second one in just a couple short hours. (I have other things to update you on, like Alaska and haircut, but at the present moment ECT takes first priority).

I have to say, at least on Monday, it took me out a lot more than I expected it would.

The procedure itself went well. One of the nurses updated Nasser with "she had a good seizure" at some point. And I really appreciated everyone there- the nurses, the doctors, the staff. They all liked me, haha.

At the end of it all, the nurse wheeled me downstairs where Nasser was waiting for me. Nasser said I just kept falling asleep- in the car on the way home, immediately on the couch once we got home. My wonderful Buddy Cat came and snuggled next to me on the couch for a long time on Monday.

The jaw pain was the first part that was difficult. I couldn't eat much because of it, and resting my head on the couch armrest made it even worse. The jaw pain lasted most of the day, improving a little in the evening, and enough to eat bits of bagel throughout the night. (Although they give me a muscle relaxant, it doesn't really work on the jaw? So they put a mouth guard in during the seizure so that I don't accidentally bite my tongue off).

The headache was rough. It lasted through until the next morning, improved a little then, but never fully went away, even yesterday. Head might finally be better this morning, but of course that's all going to change in a few hours.

It was a good thing I slept a lot of the day on Monday. I was surprised that at no point during the night did I wake up, wide awake. I woke up a lot, about every 1 to 2 hours, but it was for sips of water, the bathroom, a few bites of bagel, and pain meds if it was time.

Monday evening was tough with the kids since neither of them got the importance of them going to camps this summer. They were just angry and unsympathetic. So, I told them more about it. This was the first time we told them about the seizure portion of the procedure. We didn't tell them to scare them, but more to express the seriousness of my treatment. Since Tuesday morning, the kids have been much more supportive.

Sigh. I can't believe how much more of this I have to get through, well, and really, we don't actually know how much more it will be. The acute phase, going 3x a week, can last anywhere from 2 weeks to 5 or 6 weeks. It'll just depend on how much I'm improving.

Going to finish this post with a quote from the ECT doctors' office from Monday.

how to support someone with a mental illness

Sunday, 05/28/17, 10:22am

Oh blog. Dear dear blog. You dear dear readers and loved ones who have stuck with me through, what I believe was the worst of it, and I think I'm close to finally coming out the other side. I love you all for sticking with me, despite my illness causing me to push people away so much. I now understand, after fighting this illness for so long, what it is that helps me the most.

And I can look back on my behavior all these years and I can see my mistakes but I can also see why I made them and what I was looking for.

I feel amazing. If I didn't know any better I'd wonder if I was manic, but I know that's not it. I can recognize the emotions in myself and I can better label them now. We also think this latest antidepressant might just be starting to kick in.

I should explain. There's so much to explain though. I have to do it right, because this may still be a hard post for all of you to read.

Let's start with a couple things. What I have to say, I think I know a lot about and I want to tell you why I think that and why I think I have the authority to talk about it. You know I have depression and anxiety, right? You may assume some things about my depression and anxiety, and the best thing I can do is share about it and hope that you understand more and assume less. And you may know that I'm an engineer, so you can probably assume that I have a fairly logical and analytical brain, which may or may not give you assumptions about me. I have seen, firsthand, my whole life, how my emotional side and logical side have been in conflict. And I think I finally know how to resolve them.

What I have to talk about is empathy, something I've touched on in this blog, but something I didn't fully understand until now. Many things have led to this "epiphany" I keep talking about. I've been feeling frustrated by my illness and I feel like a burden to everyone around me but part of the reason I feel that way is I see myself rejecting their help as I get worse and worse and I feel awful about that because I want to accept their help but it doesn't feel helpful to me, for some reason I can't figure out. It's been really really hard, but as I understand empathy more, in this last week of epiphanies, I can better empathize that the people helping me have also been scared to death by my illness and my rejection of their help. They see me deteriorating and they don't know what to do about it.

So, quickly let's have a little bit of history. I grew up not understanding mental illness. When I started feeling suicidal when I was about 12 or 13, I had no idea what to do with those feelings. I knew that I shouldn't have these feelings, they certainly felt scary and wrong to me, but I was terrified to tell anyone because I didn't know how they would treat me, because to me, this was me, not an illness. So I didn't tell people. For a really long time. I figured out, enough, how to reject those feelings and be happy and choose to be happy and pretend like all that stuff had never happened. I was happy in high school and college because I chose to be happy and when I was met with people who were depressed at that time, I couldn't understand what they were going through, and I, along with everyone else, couldn't help them either.

Then after having kids, those awful, scary feelings came back. I couldn't seem to choose to be happy anymore, but I kept trying to. I was like, ok, I'll get the minimal help I need and continue to choose to be happy. And I kinda did that, somewhat well, or at least it appeared that way to everyone else. The people who saw me depressed knew I wasn't all the way better, but I was functioning, enough.

My therapist has mentioned several times that I don't seem to accept my illness. All the scary thoughts I have about myself and the reason I usually go down that hole even further is because of this ridiculous belief in me that this is all my fault. And, as it turns out, it's been reiterated to me over and over and over again by the stigma that's out there.

Let's talk more about stigma real quick. I believe that it is something that is so pervasive, even with the improvements in mental health advocacy over the years. It's something that doesn't actually seem to get better because as mental healthcare improves, we also set higher expectations on the patients to "get themselves better". And that's such a ridiculously weird expectation. We see people who are so far gone with their mental illness, and we can't empathize with that situation because we haven't lived their life. We don't actually know what that person has tried and we don't actually understand why they've chosen the care they have.

The reason I call this stigma is we don't treat people with a physical illness the same way. We don't argue with cancer patients about the care they've been getting, usually, if they are seeing the experts. But then experts in mental illness aren't perceived as experts because mental health has to do with human behavior so why do people need experts for that? And suddenly, everybody feels like they need to help but of course most people aren't qualified to do so.

Let's try some empathy on real quick. In the last few days or so, I've been applying it everywhere, I've been practicing it more, and I'm finding it's getting easier and easier to do it as I see how it works. So take for example the young teenager, struggling with bullying and suicidal thoughts. They don't know who to turn to, because despite everyone loving them, very few people are empathizing. Because as this person struggles with these thoughts, they become more and more irritable and they seem to push others away more and more. If they don't understand, like really understand, not just logically, that there is help out there and people are willing to give it, they will turn to suicide. Absolutely.

We keep using this language to describe suicide as "committing" or "choosing to die" or whatever. It turns out, that language blames that person every time. They were "selfish", etc. We refuse to humanize and empathize with what that person was going through to lead them to that act, because it's so scary that someone would hurt us that way by leaving us.

Death by cancer is forgivable. Death by suicide is not.

Because yes, suicide isn't an "option", I'm not trying to claim that it is. It's just, we have to find the right language instead of demonizing the person with the illness.

If I tell you that I'm feeling suicidal, you feel scared. Am I right? You feel like it's all on you to fix this and you don't know the right way to do it. So you do what you know best, you remind the person you love them, and you offer some way to help, by either offering to help when they're willing to take you up on it and/or offering advice. But in the case of mental illness and suicide, etc, we rarely offer empathy, because yes, it is so scary and it's almost impossible to empathize with something that is so foreign and so scary.

I find that the best help I get is when that person offers empathy, first and foremost. Before and throughout any piece of advice they have to offer.

My therapist offers things for me to do and to practice in my life, but she is trained and knows to always give empathy first. I talk about how hard my life is, and she says, "wow, that sounds tough. it sounds like you've been struggling with these thoughts for a long time." And I still don't necessarily respond super well to her advice, because usually it's something I need to change about my life. And of course that's hard. But I respond better to her than I do to someone who doesn't offer empathy.

I started sharing about my mental illness at a point in my illness where it probably wasn't quite what I needed. I didn't know that what I needed and craved was empathy. But after taking data on all the help I've received since sharing openly, I've now seen that empathy is the common thread to helpful help.

I don't think that empathy is the key to eradicating mental illness or something. I do think that empathy is the key to eradicating stigma though, and I think that's going to be my message to the world from now on. If you can empathize with these crazy illogical thoughts that are floating through my head because I have this illness that you can't just fix by telling me the right thing to try, then you can start to offer empathy and give me exactly what I need when I need it the most.

My biggest fear like I mentioned is that I can't get better, either because I won't or because I won't accept help or because I haven't found the right treatment yet. I've been looking for other people to tell me that's not true, but of course they can't tell me that because they're almost too scared to talk around me. I've been looking for other people to remind me that this is an illness, it's not my fault, but then as I refuse to empathize with how hard their situation is in supporting me, I'm not invoking the empathy I want people to show me.

The best thing to say to someone with a horrible mental illness is this:
"I am so so sorry that your illness makes you feel that way. That sounds awful and scary. I wish I could help. Please tell me if there's anything I can do to make it better and I will try to do that thing. In the meantime, I will accept you for who you are and accept that you're trying your hardest to reject these feelings and thoughts."

And the best thing for someone with a horrible mental illness to say to people supporting them is this:
"I am so so sorry that my illness makes you feel helpless and scared for me and I know that you want to help so much. And I know you love me. Please know that when I reject your help, I'm not rejecting you. I am trying so hard and I will continue to try and tell you when I need help and get the help I really need."

I love you all. Really I do. I don't want to hurt anyone by what I have to say and I'm not trying to blame others for suicide or whatever. That's not my message. My message is simply this: try to implement empathy in your life, with your spouse and children, with your parents and your siblings and extended family, with your friends and neighbors and acquaintances, and most especially, with people you find disagreement with. If you try empathy, you can usually start to understand where someone else is coming from. And that is an amazingly powerful tool.

I don't expect I've said everything I wanted to say in this short super long blog post. And I don't expect to get this all figured out real quick because what I want to do is an impossible task. I want every person in this world to put empathy first and foremost in every situation they encounter, but that's not going to happen. It's not how our human brains are wired. When we see a scary situation, we have the "fight or flight" response, and it's really really hard to stop that. I've been working on stopping that, every time I get depressed or anxious, and I haven't been very successful so far. I think, I hope, it's going to get easier, as I get better and better at empathy and asking others for what I need. I think, maybe, I'm getting there.

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.

"there must be some way out of here" said the joker to the thief. "there's too much confusion", I can't get no relief

Saturday, 05/06/17, 7:31am

Hi blog. It's been awhile. It feels like a long while.

I haven't wanted to blog the last several weeks because it doesn't feel like there's much new to share. I mean I suppose there is, psychiatric care speaking, but my mood has been down for a long time now. I suppose this is what you'd call, medically, a major depressive episode. It's lasted for a month and a half or so now, with very little relief.

It's been hard. And discouraging.

I've been on ketamine for about 3.5 weeks now, with little to show for it. We added a new antidepressant a week after starting the ketamine, but I guess we wouldn't expect much from that for a couple more weeks. Last week, Nasser and I met with another new doctor, to get the conversations started about ECT (remember, electro-convulsive therapy?). So, yeah. The current plan is to get ECT started next month. The reason we're waiting to start it, well, I suppose there's a few reasons. We have a trip planned at the beginning of June, with my family, to Alaska. And if we started ECT now, the treatment would still be going on then and I wouldn't be able to go. As of now, I'm still not willing to give up Alaska. Additionally, I had a sleep study consult scheduled this past week, and we want to get all that figured out. I'm not sure if I ever shared about this. Earlier this year, I did a nocturnal oximetry study, which is simply a test to measure the oxygen levels in my blood throughout the night. I did the study at home, with just a pulse oximeter on my finger. The test was basically inconclusive, but I did have a really weird event that night, around 2am, when my oxygen levels dropped to around 85% suddenly. And it took awhile to recover. Plus my levels, in general, had a lot of ups and downs. They weren't necessarily indicative of sleep apnea, but we do suspect that. I've always snored, and Nasser has noticed at various points in our marriage, times where I seem to stop breathing briefly. So, of course, if I do have sleep apnea, that could be a contributing factor to the depression. I'm scheduled to pick up all the equipment for a full at home study next Thursday, and I'll be doing 2 nights of it.

The other reason to wait to start ECT, is I do want to see how this new antidepressant goes. We know that TMS could have changed my brain chemistry to make me more receptive to antidepressants, so there's some hope. But then again, I feel like I haven't had much hope in quite some time. And even despite the good odds with ECT, I'm not feeling hopeful about that either. It sucks.

I've been trying some deep breathing practice, coloring, reading, distraction methods, getting help from friends and from Nasser. And I feel like nothing works. I feel defeated, discouraged, and I'm scared that I will never find relief again in my life.

I hate to cut off this blog post so quickly, with so little hope in here, but then sharing about how much I think my life sucks right now also doesn't feel helpful. I guess it's back to some distraction methods after this.