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 know I’m just spoiled and 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 think 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 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 them 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.

And I know it makes me sound like a big whiny brat but none of this seems fair. I’m most likely going to spend the rest of my life celibate and alone, which I never expected to happen. I’m also going to have to live like I’m poor when I’m not for now, so that my future without him won’t be impoverished as well as celibate and alone.

Whether or not this feels “fair” doesn’t matter. I have to find a way to get it under control anyway. The whole issue makes me feel ashamed because I can’t stop screwing up.

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.

Keeping a good mindset

I still belong to several FB groups for MS, even though that’s no longer my diagnosis. I feel like it’s necessary to stick around to remind people that the diagnosis doesn’t mean that they’re doomed.

I do feel like it’s acceptable for me to say such things, even though I don’t technically have an MS diagnosis anymore. In all actuality, what I really have is worse than MS in many ways, but the symptoms are similar. And I still think there needs to be more voices in these groups, telling people (especially those who are newly diagnosed and scared) that having MS requires some adjustments sometimes and although I have undoubtedly gotten worse over time, it’s largely up to you to have the mindset that you still have a good life anyway.

I may rub some people the wrong way by saying this, but a lot of people in those groups (as I’m sure is also true for people in other illness-focused support groups) often seem extremely negative. I can completely understand how newly diagnosed people would get more scared of their future, especially after reading a lot of those posts.

I get it that I have advantages some of them do not, such as a supportive partner and the fact that I don’t have to push myself to work a physically demanding job. I don’t mean to sound unsympathetic to their struggles at all.

But I can also tell that some people are just constantly in “poor me” mode and have made their illness a big part of their identity. For example, it’s a very common thing for people to get “MS Warrior” tattoos. I obviously wouldn’t get one for a number of reasons and maybe they’re somehow empowering to those who have them. But the truth is that most of them seem anything but empowered. It’s not like they get these tattoos encouraging them to keep fighting and staying positive; it often seems more like they want a permanently visible reminder of what they’re going through.

If that works for them, good, I guess. But to me, it seems like defining all of the complexities of who you are as a person by a health condition you have makes me really sad.

In truth, I’ve probably lost quite a bit in the 9 years since my official diagnosis—most significantly that I can’t work full-time anymore. Still, I choose not to focus on what I’ve lost, but on what I can still do instead.

I get it that sometimes the effects of chronic illness do really suck and sometimes it feels better to vent about it. But I also see a lot of people who never seem to have good days in the midst of their struggles, and I think your mindset has a lot to do with that.

My chronic illnesses do indeed sometimes suck but it’s rare that I spend entire days feeling sorry for myself. There’s so much more to me than my illnesses. I just think about how I want to be remembered and it’s damn sure not for complaining about my suffering. I want people to say, “wow, she accomplished so much considering her limitations.” I want people to be amazed by my perseverance and positive mindset.

Millions of people around the world deal with some type of suffering, many of them suffering far more than I do. I’d honestly rather see what I can do to help those who are genuinely suffering than sit and wallow in my own.

Just grateful

I know, if I looked at my life a different way, I’d be able to make a good case for why I’m doomed. My husband has stage IV cancer, I have two progressive neurological diseases that are both getting worse, etc. But I don’t feel that way at all. I actually feel pretty damn grateful.

One small reason is that my youngest asked me tonight at dinner if we could leave immediately afterward to pick up his girlfriend. She’d had a major fight with her guardian and wanted time to cool off. I said of course.

Then he told me that he hoped I didn’t mind but he already told her it was okay even before he asked me, just because he was so certain that my answer would be yes.

I love everything about that. Part of it is because he and I are close and he can usually predict how I’ll react to stuff. (He’s a lot like J in that regard.) I also love it because there was probably a time—by now long ago—when the kids probably wouldn’t have been as certain of my answer, because I was a lot more unpredictable and stressed out. It shows how much progress I’ve made.

But the reason I loved that the most is because this is always the kind of parent I wanted to be, the one my kids’ friends could come to and know they would be taken in, no judgments and no questions asked.

I discovered that since I had my micro-dosing-related breakdown about my husband’s death, I no longer feel traumatized by it anymore. I know it will happen someday and I know I will be absolutely gutted when it does. But I’m now free to live in the moments that he is still here with me, without thinking about when he won’t be. That is such an absolute relief, I can’t even put it into words.

My youngest asked me tonight if I had tried micro-dosing yet and what I thought about it. Yes, I did talk to him about it beforehand. I was very conscious not to do anything when any of my kids were under 18, just because I was irrationally paranoid that they might be taken away from me. But I have always been very honest with them about drugs and alcohol and so far it has worked to demystify them (which was my intent.)

He asked if I would ever let him try micro-dosing. I thought about it a bit and said maybe. I then asked if he thought that made me the most irresponsible parent in the world (I’m sure some people would think so) and he said no. He guessed that it was a matter of risk assessment for me, which it is, and said he knew that if he ever asked me to try a cigarette, my answer would be a definite no. (Again, he was right—I struggled with nicotine addiction for much of my life and I would never, ever want to risk my kids going through it.)

I just feel like writing thank-you notes to so many people who have helped us along the way. Everyone from my youngest’s guidance counselor, who saw and encouraged the potential in him, to my landlord, who hasn’t raised our rent in five years. (I might send the thank-you note to the guidance counselor but not my landlord; I fear that the landlord might take that opportunity to raise our rent.) Not to mention all the people who made it possible for me to move down here in the first place. I have never forgotten my gratitude about that and make every effort to pay it forward.

I live in a beautiful home. It’s not remodeled to the newest finishes but that doesn’t matter to me. It’s in the neighborhood where I always wanted to live. It was once the up-and-coming neighborhood, where the upwardly mobile crowd wanted to live, but that was 20 years ago.

The character of the neighborhood has changed a bit since then in good ways. Some of the original owners are still here but I’m also surrounded by a fair number of middle-class immigrants, who bring diversity to my life. I can put hippie pro-LGBT signs in my yard and no one ever complains. I feel safe here. I would honestly stay here forever if I could (and who knows, I might, if my landlord doesn’t raise my rent.)

We have enough bedrooms for all the kids. I have an office for myself (or my husband to use when he works from home, which is sadly not often anymore.)

I have a great home life. We all get along pretty well. And every now and then, we get little treats, like the new living room furniture we ordered thanks to a generous gift from my mother-in-law. We have two reliable newer cars for the first time in our lives. We can afford to pay bills when they come in.

Life is just really, really good sometimes. I don’t want for anything.

Writing and breakthroughs

I’m still writing at Medium a couple of times a week and I’m starting to earn a little bit of money from it. I also like that a lot of what I write about seems to resonate with people and gets picked up for inclusion in various Medium-specific publications. That increases my exposure, which in turn increases how much I get paid.

I’ll probably never get rich from it but I really enjoy it and feel like it’s a really good creative outlet for me. It’s a way that I can write about what I want to without worrying about the money, and I am super happy that my creative voice is not dead after all.

But one of the most unexpected benefits of the writing I do there is that it’s actually bringing me and my mom closer together. I really, really didn’t expect that at all.

I share what I write there with her and she always reads it and gives me honest feedback. If she thinks that something I’ve written rubs her the wrong way, she tells me.

Such a thing happened yesterday. I shared this article I wrote about kids living at home until adulthood and her initial reaction wasn’t what I expected. It wasn’t that I felt pressured to change it but rather that I knew her suggestions would make it a stronger piece, which I think they did.

It was the way she responded to the revisions that are a clear example of how our relationship is changing. She said it was “exquisite” and “sheer perfection” and very impactful.

In short, I tentatively think that I’m getting the kind of relationship I always wanted with my mom. But I think I also had to trust her (since my writing there is usually very vulnerable) and I wasn’t always willing to do that.

Did my mom make mistakes over the years? Oh, yes. But she’s shown me that she also really wants to grow. In being willing to trust her with that side of me, she’s reinforcing that she can be trusted. I’m starting to let my guard down and it’s really good.