Writing again

I wrote an article for Medium tonight and I’m really proud of how it all came together. I said a bunch of things that I’ve been thinking about for quite a while.

It’s funny, though, because I don’t really have a niche there. I think this is the only time in my 18-year writing career that I can say that. Even more interesting (and I don’t know how to say this without sounding like I’m obnoxiously patting myself on the back) is that it seems like I’m able to be successful in most of the genres I write about.

I admit that this all does make me wonder if there’s still a possibility that I could become a lot more successful as a freelance writer than I have been so far.

Again, I know this sounds incredibly obnoxious, but I do know that I’m a talented writer. I should be, since it’s the career I’ve wanted since I was five years old.

What I don’t know is whether or not my writing will keep being all over the place or if I’ll settle down into just one genre. I really have no idea what a writing career without a genre even looks like. It’s just such a foreign concept compared to the way I’ve always written.

I really like it, though. For the first time in my writing career, I actually feel free (and I feel like my writing is a lot better as a result.)

Writing milestones

I’m still writing for Medium a couple of times a week and I’m slowly but surely building a bigger audience.

So far, I’ve been named a top writer in both feminism and parenting. And yesterday, I made it to the front page of the freelancing section with my most successful article to date by far with my article on why “hustle culture is bullshit”.

I don’t know if I’ll be one of the writers there who gets a bonus this month or next, though it would be cool if I did. I am making a little bit of money there now but the money is really secondary. I really, really like having a venue to say the things I’ve always wanted to say and it’s just a gratifying plus that it seems to resonate with readers.

Even though I believe everything I wrote about how side hustles aren’t guaranteed to make most people rich, I still sometimes wonder, anyway. If I can make this many fans with just a part-time effort, what would I be able to accomplish if I really put all my effort into it?

At this point in my life, that seems like a moot point. I honestly don’t have the “spoons” to do any more than I’m already doing. In fact, I’m actually proud of myself that I can even do this much.

But still, there’s that nagging question in the back of my mind: what if I could give it all I’ve got? Could I make a lot more money from it? Should I even try?

Worrying about my kids, my husband, my future

I don’t know where to start with what I’m worried about because it feels like I’m worried about everything.

I guess I’ll start with my kids. I’m worried about Adam in particular. Their sleep schedule has gotten so erratic that I can’t predict on any given day when they’ll be awake. We have an appointment with the UTSW sleep clinic but it’s not until July 8th. I know that’s only a couple of weeks away but it feels like forever.

Adam is understandably very upset about their sleep schedule (or lack thereof.) They can’t really do anything at all around it, which includes starting therapy necessary for transitioning.

They’re finally taking hormones, so at least the process has started. But I’ll be honest that it’s much slower than I expected. I think I just got too excited and overzealous when they announced they were transgender. It’s kind of ironic because in my opinion, they already look at least as feminine as Amy (two years after she started hormones!) Adam just has very fine, delicate features. When we go out together, people always call us both “ladies” already. My sister-in-law even presumed that Adam was trans but of course they’re not ready to be out yet. I sent my dad a family picture on Father’s Day and he commented that Adam looked like a very attractive woman.

But I know the hesitation is part of dysphoria and no amount of reassurance on my part can rush them into feeling comfortable with themselves any sooner.

In the meantime, I just worry so much. About the dysphoria, about the sleep irregularities, about what I presume is under-treated depression. The only reassurance I have is remembering that Amy went through something very similar earlier in her transition (and it was every bit as terrifying to me.)

I worry because my youngest is going away to college in just a couple short months. He’s one of my very best friends and I am going to miss him so much.

I’m worried about my husband, too. This weekend is likely to be hard on him for several reasons, not least of which is that due to a scheduling snafu last time, he only has a week and a half between chemo cycles this time. And he had to work until midnight last night. And Saturday, he has to go directly from getting his chemo pump disconnected to an outdoor picnic (ugh! Texas heat!!) to get confirmed in the Episcopal church.

I’m worried because I feel so much time pressure to fix my relationship with money. I’m also worried because I don’t seem to be coping as well with all of this as I think I should be. But the truth is that there’s absolutely no kind of guide map for how to cope when your spouse is dying—especially when you don’t know when that will be.

I’m trying to distract myself by daydreaming again about where else I might want to live in the future. Maybe I’ll go to Costa Rica. Maybe someday I’ll take a lover, just because I’ll be lonely for companionship and sex. But at the same time, it’s hard to imagine anyone else wanting me, and I know I could never replace J, anyway.

The future is just so uncertain and that always makes me feel shaken.

Another thing for my therapist

I guess it’s a good thing that I have a therapist again because I’ve realized that I do have a problem I can’t solve on my own. In short, I can’t stop spending money on things I don’t need.

Admittedly, I have a lot more self-control now than I did when I was at the peak of my Abilify days. I only bought two things from Amazon Prime days, and the total was $30. (One was a Buddhist tapestry for my office and the other was an odor remover for pet stains.)

I really wanted to buy a new Amazon Kindle while they were 50% off, in part because it’s hard to read e-books on my phone and in part because I’m a sucker for the pretty plum color they have now. But I put it in my cart and intentionally didn’t end up buying it before the sale was over. (And for whatever it’s worth, I’m still wishing I had bought it today.)

I do have a ton of e-books I want to read but they’re all on my phone, which is very inconvenient. But as my husband pointed out, I have a sizable backlog of physical books to read, too.

I do a regular tour of the same shopping websites several times a week and usually don’t order anything. But I need to figure out why I still look at all, so that I can stop doing it. I told J last night that I’m like an alcoholic who allows herself one or two drinks a week but still spends every day looking up drink recipes.

Obviously, I’ve cut down significantly on what I actually buy compared to what I was doing before, but it’s still a problem. I have to find out what’s making me continue to look there when I know that I don’t need anything, and pull the whole damn thing out by the roots. That’s what I need a therapist’s help with figuring out how to do.

Ironically, the same reason J gives me for why I need to get this under control is part of why I’m doing it, though. He says that I won’t be able to spend like this when he’s gone and I already know that. A big part of me feels like I’d better do it while I still can, because I’m going to be so poor in the future that I’ll never be able to get this stuff again.

Of course, the real issue is that I really shouldn’t be getting it now, either. I should be saving all my money for the future in hopes that maybe I won’t be so poor when he’s gone.

To be fair, we’ve gotten a lot of nice things already. We have two new-ish reliable cars, a great house to live in, and got new mattresses for everyone. I got a beautiful diamond anniversary ring. And we ordered a really nice new sofa, thanks to the generosity of my mother-in-law. I shouldn’t continually need new purses and blankets and shoes, too.

In truth, I don’t know where the limit is of what I want. I’m scared that maybe there isn’t one, which is surprising because I’ve always thought of myself as anti-consumerist and minimalist. I guess that self-perception wasn’t very accurate. I went from being fairly satisfied with spending $25 a week to spending at least $100 per week, which obviously isn’t sustainable.

I think in part, I’m spending to make up for all the things I never got while growing up, which is dumb because I can’t fix the past.

But that brings up a whole lot of big things in their own right, though. Like that maybe I should have resigned myself to the fact that I wouldn’t ever be able to shop for nice things, at least not on a regular basis. The way I grew up was the way I can still afford to live, period. I’m not rich now and never was.

Yes, we can technically afford these things now, but shouldn’t be spending our money on them. I was supposed to go from too poor to shop before he got this job to living as though I’m still poor, because now he has cancer and I have to prepare myself for life without him.

I don’t want to deal with any of this but I’m going to do it anyway. I need to change my mindset so that saving makes me feel secure and spending has the opposite effect.

Anxiety creeping back in

I don’t know why I’m feeling anxious again. Ever since my first micro-dosing experience, I’ve felt a lot less worried about my husband’s health and have assumed that he’ll be around, at least until his health takes a turn for the worse. But he’s not there yet.

Still, I got to thinking and researching tonight about what happens to his student loans after he dies. I got locked out of the account to look up what his private loan balance is. I know that his federal student loans will be forgiven and I most likely won’t have to pay taxes on that, which is good. But I can’t figure out what will happen to his private loans and don’t remember the total (just that I think it’s a lot.)

I also had a dream yesterday in which my husband brought me a coffee from Starbucks, but we were clearly back in Michigan. I decided I didn’t want a coffee from Starbucks but one that you can only find at a coffee shop here.

So I set out on this ridiculously arduous journey that had me running—literally running, because apparently in my dreams I can do things I can’t in real life—through the streets of Dallas, trying to get back to the coffee shop I wanted.

Interestingly, this was also a dream that had a soundtrack and I woke up with that song in my head. It was an old AFI song that I used to really like. I’m not sure if that had any significance or not. It was just very noteworthy that my dream had a soundtrack since they usually don’t.

I told J about the dream and he said it was like a re-enactment of when I moved down here in 2014. The anniversary of when he and the kids were able to join me here was just the other day, interestingly enough. And indeed, at that time, I was figuratively running back to Texas to find things I could only get here.

I also think it was yet another dream telling me not to leave here and go back to Michigan. I admit that I’ve been thinking about that again more often lately. I still feel like this is home. But I’m also not very sure that I can afford to make it here on my own, either.

The truth is that I’m not that great at managing my money. I want to be and it’s like there’s some secret to it that I don’t know. I sure hope I figure it out so that moving back to Michigan doesn’t become financially necessary. I really don’t want to be there.

Test results and decoupling from my “sick girl” identity

I got a test done at UTSW the other day called an EMG. Basically, they stuck needles in my arms and legs and ran electrical current through it, which measures my nerve and muscle function.

Long story short, other than some neuropathy in my feet, I’m more or less normal. This is good news in terms of disease progression.

I also had a whole bunch of blood tests done and all of that was normal too, except that my vitamin D level is barely above the minimum. That’s a bit concerning because I take supplements in fairly high doses.

Yet I also noticed that I was strangely a bit disappointed by the results, which I found interesting.

I guess part of it is that I wanted the test results to be more abnormal because then it would explain some of the symptoms I’m experiencing. Being more or less “normal” is almost disappointing in that it still leaves me without any good answers.

At the same time, I always say that I don’t want my identity to be the “sick girl.” I feel sorry for people who have that mindset, but not for the reasons they want me to feel sorry for them. More, I wish they could stop focusing so much on their suffering and learn how to live with it. In my experience, the more focused you are on your suffering, the more you’re going to suffer.

Sometimes it feels like a fine line to walk between wanting to live as though I’m normal and wanting to have my suffering validated.

But ultimately, it’s very good news that my disease isn’t progressing rapidly. It means that although I’m likely to outlive my husband and that will be miserable in many ways to go through the rest of my life alone, it also suggests that I’m not likely to just suddenly die after he does. With the two diseases I have both having largely unknown outcomes, I guess I can cling to hope that even though I feel worse, I’m not actually worse based on medical testing.

I should probably try to exercise more so that I can regain and maintain my strength. It looks like I’m probably going to be around for a while longer.

Getting some help

I had an appointment with the social worker associated with my neurologist’s practice yesterday. I was honestly expecting it to be just a one-time thing where she would check in with me about how well I’m coping with my illness.

I was surprised, then, to find out that she’s actually a therapist and I’ll be seeing her by virtual visits every two weeks.

So far, I can’t tell how effective she’ll be compared to other therapists I’ve seen, but honestly, I do usually get some benefit out of seeing a therapist, even if I’ve never yet experienced the kind of relationship with a therapist that I expect and know is possible.

The best part is that she works within the UTSW hospital system, which I absolutely love and can’t say enough good things about. I even have my middle child scheduled to start going there to the sleep clinic at least (they have seriously messed up sleep schedules that they’ve been unable to fix on their own.) They also think that they’re going to request to see a psychiatrist in the UTSW system to manage their antidepressant and I will be doing the same in a couple of weeks.

The best part of all of this is that the UTSW system has very generous patient financial assistance and we qualify for it, despite having above the median income for our area. That means that we never get a bill, which covers our $10,000 family out-of-pocket deductible (minus medications.)

Seeing even a mediocre therapist (if that’s what she turns out to be) is usually beneficial enough to me to be worthwhile when it’s free. It’s harder to justify when I have to pay $60-100 a session out of pocket.

I am just really, really happy that UTSW is so amazing and that I have access to them because of where I live. I probably won’t ever move any further than Oklahoma (assuming Texas doesn’t get its shit together, though I hold out a lot of hope that people are finally fed up enough with our governor to vote him out.) I want to stay close enough to UTSW so I can continue to get care there. It really matters a lot for my quality of life and I’m happy that gradually, more of my family is switching over care to them, too.

Balancing

First of all, the Texas electricity council is saying we could have power outages due to the (very normal, happens every year) high temperatures and demand for electricity. Just like in February with the catastrophic winter storms but now in normal summer weather, too.

When I first heard that, my thoughts were literally, “what the fuck, Texas? Do you really want me to leave that badly?” There is absolutely zero reason this should be happening again, or even a threat of it. This state needs to get its shit together in a big way.

I’m hopeful that we’ll vote out the governor next year and vote in someone who will fix the power grid. Because honestly, if we don’t, I don’t see how I can stay here, despite the fact that it feels like home. I literally feel like I’m being forced out. I’d probably just move to Oklahoma City after my husband dies (which I still hope will be a long way off.)

He objected to a lot of the ways I characterized him in a recent post. He said he’s not resistant to therapy, as evidenced by the fact that he made one appointment for counseling at the hospital several months ago (which didn’t work out for scheduling reasons and he didn’t follow up on.)

He also correctly pointed out that I haven’t had great experiences with therapists, and he said that he’s going to deal with his suppressed anger on his own at some unspecified future date through meditation.

I’m all for trying to treat things yourself if you can. I’ve found reading books by psychologists to be especially helpful and to be honest, it’s how I’ve made most of my changes. Even my husband would likely agree that I’ve made a great deal of progress over the years and I did it on my own.

But to be honest, part of me wonders if he ever really will. I’m resigned to the possibility that he may not and may go to his grave still suffering from the weight of all that unhealed trauma. And I’m so sad for him because it doesn’t have to be that way.

I also feel bad that my kids have never learned a healthy expression of anger, only witnessed how to suppress it. At least, I am grateful that I am trying to discuss it with them in a healthier way. They now understand that it should have been modeled for them how to deal with anger appropriately and I think they’re each on their own paths to learning it, with my help (and professional help) when applicable.

But that doesn’t change the fact of how I feel about all this. I’m very afraid that my husband’s entire life will be spent living with that suppressed rage. Yes, sometimes it affects me, in that I don’t always feel free to express anger myself.

It is probably the biggest shortcoming in our marriage and will probably never be fixed. That makes me so sad—not for myself and the kids, but for him. I even think it’s likely, based on things I’ve read, to actually shorten his lifespan if he doesn’t deal with it. But I can’t make him deal with it and that makes me feel so helpless.

We had a conversation yesterday about how his cancer treatment and surgeries have affected our sex life and that also made me profoundly sad. Basically, he said (paraphrasing, which I’ll probably get wrong) that every year, he’s going to lose more functions.

And I just really don’t want to watch him decline. I know I don’t get an alternative option. But I just want things to go back like they used to be and they never will. That sucks more than I can say.

Looking for new directions

I think it might be time to quit my antidepressants. The only problem is that like we recently saw when I accidentally forgot to take my Abilify for a week (and when I intentionally tried to stop it a couple of months ago) I am not sure how feasible it will be to quit taking them.

In truth, my depression was managed really well with the combination of my antidepressant and the 5mg dose of Abilify. But on 5mg Abilify, I had zero impulse control when it came to spending. For obvious reasons, I can’t go back to that again. But the combination of my antidepressant plus only 2mg of Abilify is not sufficient to manage my depression.

I also wonder if my antidepressant is contributing to my constant sleepiness. That’s not listed as a side effect but the interesting thing is that my middle child started taking the same medication and describes similar effects (namely, that they just don’t want to get out of bed.)

I have an appointment with the psych department at UTSW in the next couple of weeks; my family doctor has been managing my antidepressant medications up until this point. I don’t even know what to expect from that.

My neurologist said something about possibly switching my antidepressant to one I’ve taken before, which I did not have a good experience with. It’s also associated with pretty massive weight gain, which I really don’t need. But the antidepressant she wants them to put me on is supposed to help with neuropathy (including the pain in my arm.)

Micro-dosing helps with the pain in my arm but even that only provides relief every third day. Micro-dosing is usually supposed to be done on that kind of a cycle, one day on followed by two days off. I’d have to research whether it’s possible or if I’d still get benefit from taking it more often.

There’s also the fact that antidepressants makes micro-dosing have a weaker effect. And from what I’ve read, micro-dosing mushrooms would probably be more effective and I could grow them myself—but can’t really be combined with antidepressants at all.

I know, I know—it’s easier and more acceptable to take the pharmaceutical route. But the pharmaceutical route has a lot more side effects and a limited effectiveness rate.

I’m one of the many people who has what they call “treatment-resistant depression.” I tried just about every antidepressant on the market (minus the newest ones, which are far too expensive) with no success until finding this one. This one really only worked well with the 5mg Abilify added on. Now I feel like I’m barely on anything in terms of how it’s helping me.

And I just really don’t want to get on the treatment merry-go-round again. I’ve already spent 20 years of my life trying and failing antidepressants. I’ve had doctors assume that I must be secretly undiagnosed bipolar 2 since my response to antidepressants was so poor, so they tried adding mood stabilizers and nope, that didn’t fix it, either. (That’s probably because I’m not bipolar 2.)

I just have unipolar major depressive disorder with whatever the new word is that they use for dysthymia on top of it (also known as double depression.) I’ve had these symptoms since I was five.

I would like to be free of the antidepressants since they don’t seem to be helping me anyway. But everything I’ve read suggests that my antidepressant will be just as hard to quit as the Abilify and I’m already scared by how hard that is to quit.

I feel like I got started on these horrible drugs that are now essentially holding me hostage and I just want to stop.

Oh…this again

I’ve mentioned before that the one recurring issue in my otherwise healthy and good relationship is that my husband can’t deal with my anger or irritation very well.

Yesterday and the day before, I was uncharacteristically just in kind of a grumpy, irritable mood. He said it seemed similar to PMS, which is what it felt like to me, too. My hormones are kinda out of whack as I go through this whole perimenopause thing.

I apologized to him repeatedly about taking out my grumpy mood on him. And to be fair, he’s on chemo right now, which makes him feel extra crappy. I tried bringing him a drink he wanted from the bubble tea place as kind of an apology and a peace offering, which seemed to be received well.

But the fact of the matter remains that he doesn’t seem to want me to ever express any frustrations about anything, which I just don’t think is realistic or healthy. I get that it seems to trigger something in him that makes him feel unsafe, and I’m very sympathetic to that. And to be clear, at least from my recollection, I wasn’t yelling or name-calling, just venting my frustrations.

I don’t really know what to do next, to be honest. I’ve brought up the idea of therapy before and he seems pretty uninterested. I suggested he try micro-dosing and he said that he has so much suppressed rage that he’s scared that doing so would be a danger to himself and others.

I deeply believe that years of suppressed rage contributed to his cancer diagnosis (that and chronic lack of sleep.) He’s a good man and I love him. But at the same time, I feel like I have to walk on eggshells, suppressing normal and probably appropriate emotional reactions of my own, and I don’t think that’s right.

It’s one thing for him to suppress his own emotional reactions but quite another to ask me to do the same. Again, to be clear, I think I kept my expression of frustration to an appropriate level. But it seemed clear that he didn’t want me to be feeling that way at all and that he took it as both inappropriate and threatening somehow.

Normal relationships should have room for appropriately-expressed venting every once in a while. He even admitted that he couldn’t remember the last time I was in such a mood, so it’s clear that we don’t have a high-conflict relationship and I’m not usually an angry person. To be honest, I’m usually pretty chill. I also feel like we haven’t shown the kids how to deal with anger in a healthy way, which is a skill they need to have.

But I see his admission of his “suppressed rage” as a bigger problem. I don’t think it will go away if he keeps trying to ignore it. And if he wants me to only be happy all the time, well, that may be somewhat impossible with the hormonal shifts I’m experiencing.

It just seems like this could be an opportunity to learn how to express anger and frustration more appropriately and it feels like he doesn’t even want to try. He just wants to shove it down deeper.