Nothing new

My week coming up is going to be crazy busy and I’m trying to gear up for it.

I have a bunch of stuff to return so I’ll be heading to the post office and the UPS store and FedEx store. But hopefully once I get those packages out of here, it will look less cluttered overall.

My clutter right now is mostly confined to just my office and part of my bedroom. But it’s really bugging me a lot and I’m sure it’s bothering my husband, too.

I also got a letter from the Social Security Administration inquiring about my earnings. Apparently, I’m supposed to update them frequently about how much I’m earning.

It’s also possible that I may have earned too much this year by $1000-$2000. I did a lot of internet research and most likely, I won’t be kicked off disability but I may have to pay back any overages.

I also screwed up by not reporting my two trials of work as formal “trials of work.” I lasted less than a week, which counts against my earnings but doesn’t show that I was unsuccessful in trying to work. That would have been really helpful to my case if I had reported it as a trial of work.

It turns out that my “slow” months at my primary writing job is right about where my earnings should be. For some reason, I thought the earnings limit was several thousand higher than it is. I know for a fact that I got my figures from information the SSA sent me, so maybe I was looking at the amount blind people can earn (which is higher.)

I’m not really sure but I need to be paying a lot more attention to this.

I have all kinds of other things I want to write about but my energy is just low lately. I slept really late both yesterday and Saturday, which was disappointing because I wanted to be more productive and spend more time with J.

But I’m also learning that I can only shortchange my sleep for so long and then it will force me to get the rest I need. Since this week is going to require a lot of limited-sleep days, I wouldn’t be surprised if the same thing happens again next weekend, too. But I really don’t want it to. My sleep needs are really frustrating to me, especially because they’re so inescapable.

Holding patterns

I realize that I am essentially in one long holding pattern. This is not necessarily a bad thing. But I find that I’m often trying to live in the future, which is essentially still mostly an unknown.

I keep trying to rush ahead, to plan out what is still a very uncertain future. While knowing what I’ll be doing in the future (or even where I’m going to live!) might settle my anxieties now, the question still remains: then what?

Essentially all the questions about where I’ll live—whether it’s in this country or not—are all distractions from the fact that my husband is going to die. I don’t like those thoughts very much.

But the fact of the matter is that he’s still here now and that’s the important part. I may not have the luxury that my mom does, for example, of being assured that my husband will always be around. We are unlikely to ever make it to our 50th anniversary (which my parents will celebrate in a little over 2 years I think, unless my math’s wrong.)

But J’s still here now. My challenge is to stay in the present moment as much as I can, rather than trying to look ahead to the future day when he won’t be. And although that seems simple and obvious, for me it’s a very great test of my anxiety.

I have enough going on right now to keep me busy and occupied, though. I need to get Chloe to all her appointments and then help build her confidence enough to get a job. I also have to do my own work and get my house organized. You know: life stuff.

I have to be here for Dylan as he tries to decide whether or not to stay at school or if he wants to take some time off.

I get to enjoy my relationship with Amy as she experiences truly being an adult living on her own for the first time. I just saw her yesterday and it was really enjoyable. Once again, she talked to me about how much harder it is to be on her own. Yes, there are good things that outweigh it. But she understands so much more about me and what it’s been like to be responsible for things.

For example, she now understands why I felt so panicked when I couldn’t find toilet paper last year and why I resorted to ordering an (admittedly awful) case of office-quality toilet paper.

And she and her boyfriend just upgraded their cell phones. Previously, they both had what she called “meme phones,” which they customized a lot but they sometimes didn’t work. Now that she and her boyfriend have to be in touch with each other, they realized that they had to have regular phones that aren’t customized at all.

In fact, she brought up the time when I switched to an iPhone, back when AT&T was the only carrier. I only had that contract for a couple of weeks before I realized that it just wouldn’t work because AT&T had terrible service where we lived at the time. I was working at a library whose office was in the basement and I got no service at all down there. Because my kids were home alone (because as usual my parents couldn’t be assed to babysit) I had to be reachable.

She said that at the time, she didn’t understand why that was such a big deal; she thought surely I could just go upstairs to get reception. Now she said that the idea of being unreachable was “like OH MY GOD this is an emergency!”

Interestingly, she is now at almost exactly the same age as I was when I had her. And being on her own and trying to manage it (as well as manage her own anxiety) has only strengthened her resolve not to have children of her own. I kinda knew that already so it’s not a big surprise and I’m not emotionally invested in having grandchildren, so it’s all good.

But I have to admit that it has given her a much greater appreciation for what I’ve been through as a parent and she now has an idea of how hard it must have been.

I didn’t ever try to make her (or any of my kids) feel like raising them was a hardship and I’ve always been open about the things I screwed up. But hearing my daughter say that she really gets it now is always a nice affirmation to hear.

Having all my kids reaching various stages of adulthood and independence is really rewarding. I think I’m just going to try to hang out here for a while and enjoy it as much as I can.

Break’s over

Well, I guess my “break” didn’t last very long; it’s already over. I have lots of deadlines this week.

I still feel really burned out and tired, though. I slept almost the whole day yesterday and still feel like I could sleep even more. I don’t honestly know when I will feel back to “normal” again. I have been this burned out before but have never before been in this state where I just can’t get enough rest.

My husband keeps telling me that I need 10-12 hours of sleep a night and I haven’t been getting that for at least a month. I don’t want to need so much sleep.

I know that needing more than eight hours of sleep a night isn’t normal. I know it’s associated with heart disease but I’ve had extensive work ups of my heart and it’s fine. I’m still scared anyway because I’m inching closer to the age when my mom had her heart attack (53.)

My husband keeps pointing out that I have two different types of leukodystrophy, which explain why I’m so tired. But honestly, a big part of me suspects that my mom has the same type of leukodystrophy and has never been diagnosed because the doctors in her town are so shitty. How do I know that heart disease isn’t also a symptom?

After all, her doctors didn’t find any of the telltale heart problems that are usually associated with heart attacks, so the fact that the doctors haven’t found anything wrong with my heart isn’t really that comforting.

Then again, I don’t know if I just have a bad case of health anxiety. I might be totally healthy (leukodystrophy aside.) But because not even my highly-qualified neurologist nor any of her colleagues have ever seen a case like mine before, none of us really know.

Having an extremely rare illness means that no one knows anything about what will happen to me. And sometimes that’s really terrifying. I guess all I can do is try to get more rest (as much as I hate it) and hope that I’ll start feeling better soon.

Another day of doing nothing

Don’t worry: I won’t update about my days of doing nothing forever.

Yesterday I took Chloe to get her hair cut by my stylist. Chloe hadn’t had a haircut in three years, in part due to not trusting anyone to do it and also (I suspect) due to some depression she was dealing with.

It’s really good to see that she’s starting to come out of her shell a bit now. I promised her that my hairstylist would do a good job and I was relieved that she did. Chloe took in a picture of a layered cut that was slightly below chin-length.

Because my stylist is really good and knows what she’s doing, she actually left it a bit longer because she said it was likely to poof up too much if she went as short as the photo. Chloe’s hair is very thick like mine so the stylist knew what to watch out for. My stylist isn’t the cheapest but I pay a bit extra because she knows what to do with my hair and always errs on the more conservative side when it comes to taking off length.

So now Chloe has a haircut that makes her feel more confident about herself and more feminine. And I have to say that I was totally just wonderfully impressed by the fact that my stylist didn’t treat her any differently because she was trans. I sent my stylist a text afterwards telling her how happy Chloe was with the haircut and added that as a mom, I really appreciated the fact that she didn’t treat Chloe any differently for being transgender.

Her response was “she’s beautiful!” And that just did my heart so good.

I see Chloe gradually blossoming and becoming more confident in herself, which makes me really happy for her. I also really enjoy the fact that she enjoys doing typical “mother-daughter” stuff like discussing makeup. Tomorrow we’re going to go together to the bath and body store and possibly to get coffee.

I’ve missed out on most of that with my oldest daughter. She’s not interested in as many stereotypically “girly” things. It’s kind of amusing because I am not the biggest girly-girl myself. But I do sometimes enjoy that and I like having someone to do it with.

This year since Dylan’s been away at school, it has given me more time to develop the relationship with Chloe and that’s been a really good thing.

On another totally unrelated note, my husband is back on the more intense chemo regimen that he took at first, and so far, it seems to be working. He had a lot of pain in his side before, often severe enough that it interfered with his sleep.

After being on this new chemo regimen for about a month (maybe longer? Who can tell what “time” is anymore?) that pain is going away. His doctor suspects that the pain was caused by the cancerous lymph nodes and presumably, those lymph nodes are shrinking.

So yes, it’s a drag that he’ll be on chemo for both Thanksgiving and Christmas this year. But maybe this regimen will get him back to “no evidence of disease” status again like he was before. And if it does, that will definitely be something to celebrate. He might just be around a while longer, which is the best thing I can ask for.

Day one of my official break

Never mind the fact that I’ve technically been on break for almost a week now; this time I’m just making it official.

I’m discovering that I am really, really bad at not working. This is supposed to be “self-care” time and I’m really bad at that, too.

I did look at a couple of job listings today and had to talk myself out of applying for them. It might take a while for me to catch on to what I’m supposed to be doing (or more accurately, not doing.)

Everyone I’ve told about taking time off for myself to just be is totally supportive of it. I just can’t seem to be yet. The relationship between myself and my productivity is so stubbornly intertwined that I don’t even know how to begin to disentangle them.

My husband said that he thinks that I haven’t been this burned out since the last time I tried working outside the home, which I think was 3 years ago? I know that I am crashing hard from everything catching up with me, particularly regarding his cancer diagnosis. I honestly still haven’t dealt with that at all.

I think a lot of my burnout also has to do with Dylan being away at school, both because I’ve taken on all the things he used to do and in terms of carrying the mental weight of making sure he’s okay.

I talked to him last night and he sounds like he’s doing much better overall. He loves the grocery chain down where he is, which is well-known throughout Texas but hasn’t expanded to the Dallas area yet. He’s also discovered that it’s a lot harder to get good grades in college than it was in high school, which is probably due to the major he’s in, which is notoriously hard.

However, I’m also worried about that because he has to maintain a 3.5 GPA to pursue his chosen major and he currently doesn’t have that. I just have to keep telling myself that I can’t worry about his academic performance and he knows what’s required of him. If he doesn’t make it, he doesn’t make it. That kind of hands-off approach is difficult for me, I admit, but it’s not like I can micro-manage him into performing better anyway.

Frankly, at this point, he’s had such a rough adjustment that I’m just really glad he’s still hanging in there at all.

J told me that he’s going to be on chemo both for Thanksgiving and Christmas, which is going to be challenging, I think. It’s also the first time he’s had to take them during the holidays. I’m certain it’s much more of a drag for him than for me but it is definitely going to cast a shadow over the holidays.

I also told my psych nurse practitioner today that I didn’t want to go on another drug in the same class as Abilify, in part because they’re so risky. But I also explained that I don’t necessarily think it’s realistic to try to expect to be happy right now and that I’ve been trying to medicate away my feelings about the fact that J’s going to die.

I told her that I didn’t think that was healthy and that I just need to let myself feel it. That may mean that I’ll be depressed, some days more than others. To my surprise, she totally agreed with me.

So I guess here I go into the uncharted territory of letting myself feel whatever comes up. I’m releasing the expectation of productivity from myself. It still feels very strange and abnormal. But hopefully, in this I’ll find my value and reason for existence that is neither defined by my role as wife or as writer. I have to be okay with myself just as I am. That’s going to be a tough journey at times but I hope it will be worth it.

The answer is no

I got the answer about the job yesterday and I didn’t get it. Honestly, my main reaction for most of the day was just shock. I’m still shocked. Either I completely misinterpreted the interviewer’s reactions to me or someone else with more exact qualifications also wanted third shift. Since they were presumably (?) hiring more than one person for third shift, I don’t understand how I didn’t make the cut.

I’ll be honest that it’s making me question whether or not to become a therapist a little, just because this would have been such a strong sign that I should. It’s also making me wonder if I should still seriously consider moving out of the country when J’s gone.

But maybe there are no such signs from the universe right now, as much as I want there to be. I can tell when the universe is giving me signs; for example, I remember writing in the week between Christmas and New Years in 2012 that I would end up in Texas the following year, even though I had no idea how it would happen.

Sure enough, three months later, I was back in Texas and embarking on possibly the hardest but most rewarding thing I ever did.

And actually, I can tell that the universe is giving me very strong signs right now but I don’t like what they’re saying. Right now, all the signs are pointing to rest. I hate that, because I want to be super productive and I want to know that my future without J is settled and I’ll have a purpose and be able to take care of myself.

But my freelance work has slowed way down and I’m not getting more right now. I even had one client want me to do a bunch of work for them on Upwork and I haven’t even heard back a response to an important question I asked last Friday. Everything seems to be coming to a virtual halt right now. I think that I’m getting a pretty clear sign from the universe that now is not the time for me to be taking on a lot of work.

Honestly, I’m still really recovering from burnout and I’ve been burned out on freelancing for years. I don’t know if eventually I’ll recover from this and go back to freelancing again or if I’ll find some other as-yet-unknown way to earn money.

I just want to sleep and read and watch TV. Numb out. It’s like my brain and body are saying NO MORE and going on strike. I don’t know if I’ve ever experienced this before.

Meanwhile, I have another appointment with my psych tomorrow and I know she’ll want to put me on another drug in the same class as Abilify, and I’m not sure how I feel about that. For one thing, all drugs in that category have a shit-ton of side effects, some of which can be permanent even if you stop taking them.

And for another thing, I’m increasingly just not sure that I should be trying to medicate myself so that I don’t feel what’s really happening to me. Trying to be “happy” when my husband has cancer and the US is going to shit is actually a totally appropriate reaction, even though it’s not conducive to being a great worker bee.

Maybe I just need to really let myself feel the fact that things are pretty tough right now and stop trying to medicate it away.

A different focus

I had therapy yesterday and it was helpful. First off, my therapist wholeheartedly agreed with me that I should get off of disability if I can. My husband also agrees with me but it is so hard sometimes to break out of my “Michigan mind” (aka learned helplessness.)

I also realized how much I still allow myself to be swayed by my parents’ opinions. Both of them are adamant that I probably can’t work again and should just learn how to be happy with disability earnings and J’s survivor benefits after he turns 50. They say that if I’ve gotten disability, I shouldn’t give it up, because I might never get it back again.

But the thing is that I do still feel like there’s more that I can do. I just have to work with my sleep schedule, which rules out jobs that start in the morning. But I can be a therapist and offer evening hours. Many, many people find the fact that most therapists work standard business hours to be a bad thing.

I just feel like I have to fight and keep fighting to prove that I’m not permanently out of the game. My parents don’t understand that or why I want to keep working.

On another note, though, my therapist gave me “permission” to take some time off (as have J and Chloe.) I told her I didn’t know why I felt so incredibly unmotivated lately and she actually said, “Maybe you just need to rest and relax?”

And I was honestly kind of shocked to get that answer. I thought she would give me advice on how to buck up and push through it and she didn’t. She specifically said that if what I want to do is read or watch TV, I should just let myself.

So I had another fairly unproductive day yesterday, too. I’m still honestly struggling with being okay with that and not beating myself up for being lazy. I know intellectually that she’s right, that everyone needs time off sometimes. But letting myself do it and be okay with it is something else entirely.

She also said that when I have my appointment with psych on Wednesday, that I might not need to change my medication to get off Abilify. It’s keeping me pretty stable and the only downside is that I’m too free with spending money.

She (rightly) suspected that my spending is out of boredom and that if I get this job at the health insurance company, I’ll be too busy to be bored and the problem will resolve itself. But that is also a dangerous gamble.

I realized that I may not hear whether or not I’ve gotten the job for several more weeks, though. They’re hiring EAP coordinators in advance of getting a big new client at the first of the year and training will be about a month, so the job itself probably wouldn’t start until December.

I still really, really hope that I get it and that I can hang in there for a month of training on first shift. I know it will be challenging for me but I believe I can do it.


Yesterday was a pretty boring Halloween as all things go. We had very few trick-or-treaters, even less than last year. That was kind of surprising because the weather was really nice for it. I’ve got an article started for Medium about it but didn’t get much done on it.

I haven’t done any significant work in the past two days, which is unusual and pretty remarkable. I know I’ll have more work tomorrow. But I just wasted my “time off” and I feel incredibly guilty for not being more productive with it.

I want to get stuff listed on eBay and didn’t do any of that. I want to clean my bedroom and organize my clothes and didn’t do that either. I don’t know why I’m just being so lazy lately.

I do know that part of it is that J’s on chemo this weekend, which always makes me feel out of sorts. He usually sleeps a lot on chemo weekends and often I do, too. I don’t know what’s up with that but I find it very hard to resist.

I have therapy tomorrow and a psych appointment sometime this week. (Maybe Tuesday? I should probably check.) The meds I’m currently on really aren’t working for me at all. The Abilify is still making me spend more money and I really need to stop that.

I know if I could just exercise, it would be more effective than any psych meds. But I’m trapped in a loop of just thinking about it but not doing anything about it.

Basically, I just have no motivation to do anything and I don’t know why. But maybe just holding myself somewhat together is enough for right now and I’m expecting too much of myself? I really don’t know.

Unfocused…and bad therapists

I can’t seem to get focused on the work I’m supposed to be doing. I really, really hope I get the 3rd shift EAP coordinator job because I want to ditch my freelance work.

Of course, that creates a dilemma: do I quit the freelance work, knowing that I could fail out of training? Or do I quit it because it would make it that much harder to get through training in the first place?

It’s not a simple choice, because I have one primary client that accounts for the bulk of my work. If I don’t make it through training, I would miss having that work. But I also know that (probably unlike most people) I probably can’t really function doing both.

Of course, it’s currently a moot point, because I haven’t been offered the job yet. But if I am, I think it’s really going to be a good thing.

Interestingly, my daughter asked me yesterday what therapy is supposed to be like and if it was common for therapists to give you “homework.” I said that many therapists do give out worksheets (which is kind of a pet peeve of mine, to be honest.)

But then she said that her therapist “assigns” her things to do—like making big sweeping new habits to change—and expects her to make real progress on them by the next week! And when she (my daughter) fails to do so, the therapist told her, “you get out of therapy what you put in.”

I was just like no, no, no.

The therapist is still essentially a trainee, working under the supervision of the therapist my other daughter saw when she was going through transition. My other daughter’s therapist was immensely helpful and she really helped her gain confidence in herself and presenting as trans.

The trainee therapist my younger daughter is seeing is very much not helping. My poor daughter said she felt worse about herself after her most recent appointment and that she thought therapy might just be something she “has to endure” until she can get the therapist letter required for the name and gender marker change.

Honestly, the first thing I thought was that I would do a better job than that. I know this trainee is new but still has 2 years more education than I do. I respect that fact. But I just can’t believe she’s not even trying to recognize where my daughter is mentally and meet her where she’s at.

Instead of telling her that she needs to get on a consistent schedule, start exercising and make more phone calls—all in one week!!—the therapist needs to break that down into making ONE small change by the next visit.

More important than that, the therapist should be curious about why my daughter has such inconsistent schedule issues and probe a little bit to find out what she’s gaining emotionally from the inconsistency.

I don’t know, I know how conceited and full of myself this will sound, but I couldn’t help thinking that I would already be a better therapist than this person.

So I reaffirmed that my daughter shouldn’t feel like her therapist was expressing disappointment in her and that it’s perfectly okay to take her time. I suggested that maybe she should try to take on just one small change.

The part I didn’t tell her is that taking on just one change and succeeding at it will likely boost her feelings of confidence and competence, which will then make her more likely to succeed in taking on the next challenge. All this stuff is seriously so elementary to me that I’m honestly a bit stunned that it didn’t occur to her therapist.

I told her that she needs to be blunt with her therapist—which is something she’s good at—and tell her that she’s unhappy with the direction therapy is taking so far, and decide whether or not to proceed based on how the therapist responds. But I think that kind of feedback is exactly what a new therapist needs to hear.

Then, because we were being very honest with each other, I told her “if, using a hypothetical example because I know this is something Amy struggled with, you feel like you need more confidence to present as female, you should tell her that.” I could tell I hit a nerve with that one because she got tears in her eyes.

Honestly, this whole experience just makes me feel even more like I’m meant to be a therapist. And I want to specifically work with LGBT people, particularly young people and their families. Even more particularly, with young transgender people.

I really hope I get this job. But even if I don’t, I know for sure I have to start going to school part time (so it doesn’t get me kicked off disability.) I’ll figure out what to do later about my missing freelance income, because I really don’t think I have the bandwidth to do both like I did before.

And honestly, I would also like to say how completely honored and humbled I was that my daughter felt like she could ask me that question. The state may not let me be her therapist (and that would be an obvious conflict of interest anyway) but I am so grateful she trusts me enough to point her in a different direction.

It also really made me think that I am doing at least some things right because I never, ever would have gone to my own mother with similar concerns. I just want Chloe to find a good therapist who draws her out of her shell and lets her feel more confident in presenting her true self to the world.

New horizons, maybe

So I guess the first piece of big news is about a potential new job. I had a first interview two days ago (with two people) and a second interview with someone else yesterday.

The interviews both went very well as far as I could tell. They called me like 15 minutes after the first interview to schedule the second, and the second guy interviewing me told me that my answers were awesome.

Somehow last night I had set my alarm for PM instead of AM and I would have missed the interview entirely. J texted Chloe and she was actually awake (which is itself unusual) and she came and woke me up 10 minutes before the interview. How I managed to be alert and functional is still beyond me. I don’t even think I said “umm” or “what was I saying, again?” even once, which is also unusual.

So the details are that it’s an EAP coordinator for a major health insurance company, working third shift and remotely. EAP stands for employee assistance program and the job is essentially listening to people tell me their problems and then triaging them accordingly. The second tier of representatives includes licensed counselors, meaning I’d have advancement opportunities (which they told me about.)

All the positions are remote and they do have other shifts available—but I want this one because it’s on third shift.

They offer much better health insurance benefits than what my husband has available through his employer, which is a huge selling point. They also offer tuition reimbursement, which would really help me.

The only downside (and it’s a significant one) is that I would have to wake up for training on first shift for about a month. I tried that before and failed.

But to be honest, that was for tech support, which isn’t a great fit for me, and I encountered multiple problems very early on that showed that the company was really disorganized. It also paid less than this job and had very typical (read: expensive) benefits.

This job actually makes me feel like I might really be on the right path with pursuing a counseling degree after all. And I might be able to provide GOOD health insurance for myself and my kids.

My future really might have more to offer than just disability, survivor benefits, Medicare and freelance writing. None of those are things that I particularly like or want and I feel so beaten down by the thought that it’s the best I can do.

But maybe it’s not and that has me feeling so much more optimistic about my future.