Personal Update – More Ups and Downs

Once again, it’s been months since my last update. In my last update, I was starting haloperidol (brand name Haldol) to hopefully get me to a spot to get me off of lithium, which worsens my chronic kidney disease. My last blood labs shows that my creatinine is 1.45, which is not great, but seems stable – I see my nephrologist at the end of this week and will see what they have to say.

My psychiatrist recently tried to lower my lithium further from 300mg down to 150mg, a little more than a month ago. However, shortly after lowering that dose, I crashed again and spent a few weeks staying in bed for 20+ hours a day, just trying to sleep. I felt so, so, so terribly low, didn’t have any energy or motivation. On Halloween, I wore a cute little Oogie Boogie dress and had grand plans of going out downtown for some drinks. Those dreams were short-lived, and I settled on having some drinks at home by myself, but spilled the first drink on my dress, gave up, and went to bed by 8pm. I hadn’t gotten out of bed until 2pm or so that day I think.

So yeah, lowering my lithium, even with my high dose of lurasidone (Latuda) and haloperidol (Haldol), both antipsychotics that also act as mood stabilizers, caused me to become very depressed and withdrawn. I had grand plans to start working out to try losing weight right before we lowered that dose, and once we did, I was quickly unable to keep up with my “small, achievable goals” of working out for 45 minutes 3-4 days a week and taking a shower on those days. Thus my psychiatrist has arrived at the conclusion that I need lithium, and it is not an option to not have lithium in my medication cocktail. I’m back up to 300mg again and am feeling significantly better, though I wish I could go up on the dose. We’ll see what my nephrologist says, as this 1.45 creatinine reading and GFR of 51 were obtained at 300mg lithium. My previous readings in July – and, in fact, for the last year or more – were consistent with that. My last GFR reading (Glomerular Filtration Rate, another indicator of kidney function obtained via blood work) was 50, so I’d say if that’s not getting worse, then we’re probably in decent shape. But I’m not a doctor; like I said, we’ll see what my nephrologist says, and then we’ll talk to my psychiatrist more.

I haven’t been up to much recently, as a result of so many ups and downs in my mental functioning. For the last couple nights, I swear I hear voices or the TV upstairs or a radio playing, and I have to turn up my music. It’s hard to tell if it’s a hallucination or just background noise. I live in my mom’s basement, so it’s entirely possible I’m just hearing her watching TV or talking upstairs, but it seems harder to hear in the silence, which equally unnerves me – leaving the only option to be turning my music up to drown it out. I don’t know if psychosis is known to actually get worse on haloperidol, and I can’t remember how long I’ve been hearing these noises, if it was before I started haloperidol or not. Last time I saw my psychiatrist, I told him I didn’t want to mess with it unless it becomes a problem, which it hasn’t yet. Usually, the words I can pick out aren’t aggressive or even mean. One voice was even trying to give me tips on baking bread. They’ve just been talking about things, and I catch little bits of their conversations, but they’re not about me or anyone I know. Hopefully if they start attacking people in my life or me again, I still have the insight to tell my psychiatrist so we can do something about it.

I was supposed to have my SSI hearing last August, but when it came around, their “medical expert” didn’t have my files for the last year, including my last failed work attempt, so the Administrative Law Judge postponed my hearing. Now it’s not until the end of January, so I get to lay low until then. I have had a couple fun experiences in the last few months, but I’m worried that the SSA is monitoring my social media, including this blog, so I feel like I’m not allowed to enjoy myself or life until my hearing is over at least.

It’s not like I’ve just been traveling and having fun and doing things. I’ve been struggling, truthfully. I’m still going through significant med changes. I still can’t bring myself to shower more than twice a week. I’ve brushed my teeth the last two days and that by itself is a huge accomplishment for me, since I usually only brush my teeth before a shower. It’s absurd how strict people are about giving out benefits. How I can so clearly be disabled to those who know me, but somehow going to Boston once somehow shows I’m capable of working a job, because I just know they’re going to throw that trip back in my face. On the rare occasion I’m feeling up to recording a video or streaming, I feel like I can’t even do that, because they’re going to say, “There was exactly one day last month where you played a game on your computer for an hour – tell us about that,” as if it wasn’t a monumental effort just to get out of bed in the first place.

It’s extremely discouraging to be having so many ups and downs all the time and feeling like I can’t even enjoy the ups because they’ll be used against me, even though the downs very clearly override the ups’ benefits. Not being able to keep that dog bathing job just made me feel worse about things, and when I expressed what needs I have to maintain a job, my job counselor guy said he didn’t think I had options for work. How is that not enough?