Grace has had a few bad days. We haven’t had days like these in a long time. Sure, she gets into moods, but we all have moods. Granted her moods are more extreme than yours or mine most likely. Her bad days are the kind of bad days that land someone in the Behavioral Health ER. Suddenly, she’s sad. Then, she’s really, really sad. Then, she feels compelled to act on her sadness by harming herself.
This kind of mood comes on fast. I can’t predict it. There are no harbingers. It’s like a random strike of lightning. One moment, you’re enjoying your Sunday on the golf course, working on your putting. The skies are clear. The sun is shining. The next moment, you’re on the ground with no memory of what happened to you. Mood disorders can behave like this. Once the extreme mood passes the sufferer often can’t remember what that mood was all about. It’s just a blur of intensity and high color.
This is Grace right now. Intensity and high color. We’ve had to use our PRN prescription of Seroquel a few times recently to manage her moods and psychosis. She’s been hallucinating daily and very sad. This is not a great combination. We can have one state at a time but not both. This can lead to the dreaded mixed state which is the Patriarch of dangerous mental states, but, for whatever reason, Grace tends towards falling into mixed states. So, yeah, I need that bottle of Seroquel in my back pocket. It’s my magic bullet.
Dr. Awesome, however, doesn’t like it. Dr. Klerpachik didn’t seem to mind, but he warned me that Dr. A would probably get all up in his business for prescribing the same class of anti-psychotic as Abilify to manage Grace’s symptoms. She is the queen around here when it comes to psychotic disorders in children. She trained Dr. K. We just had our check-up with Dr. Awesome, and our visit didn’t exactly go well which surprised me. Usually, it’s in and out. Here’s your prescription, but Dr. A is thorough. She is not happy that Grace is still hallucinating. She hallucinates a few times a week, and she is currently hallucinating daily. Most of her hallucinations are benign. She sees our cats doing weird things like sitting in the kitchen sink. Sometimes, however, she sees things that stress her out like a weird, faceless man sitting next to her on the couch watching TV with her. Or, she might see an arm reach out of the couch to try and grab her leg. That’s not quite as benign. It’s just creepy. She no longer trusts her own perceptions as a result.
Yesterday, two of my daughters were outside romping in the snow. I could hear them yelling at each other inside. Ah yes, a snowball fight. Suddenly, Grace said, “Mom, I hear voices now!” I heard her sigh. I replied, “Grace, we’re all hearing voices. Your sisters are outside having a snowball fight. That’s what you’re hearing.” Sounding almost overjoyed, Grace sighed again with great relief, “Oh good! I thought I was hearing voices!”
Dr. Awesome was very direct and told me that Grace isn’t going into remission. The drugs should have stopped the progression of her “illness”. She’s on so many medications that she’s concerned about her side effect profile. She was reading through the notes in her file and asked about the mitochondrial disease. “What’s this mitochondrial disease? What do we know about this?” I shrugged. “I don’t really know. We don’t know, and if she does have it we treat it how we’re treating it.” She stared at me. “What does that mean? I know nothing about mitochondrial diseases. If she has it, then I need to read about it. I need to know what I’m looking at. I need to know!” Don’t we all. I need to know as well because mitochondrial diseases are often progressive. Could that be why Grace continues to hallucinate? Is that why she continues to slide down the slippery slope of cognitive decline? Grace has a brilliant neurologist, but even she’s at a loss. Mitochondrial diseases are very hard to diagnose and just about impossible to treat. I think, however, that Dr. Awesome is not happy not knowing. Dr. Fabulous and I can perhaps live with the mystery and administer palliative care. Dr. Awesome wants answers. Hell, I’d like answers, but I sort of feel like Inigo Montoya from “The Princess Bride” asking the Masked Man to reveal to him his identity during their epic duel:
“Who are you?”
“No one of consequence.”
“I must know.”
“Get used to disappointment.”
Alas, there will be tests and more tests no doubt in Grace’s future. Her presentation is just too complex. In the meantime, I have to figure out ways to parent her that don’t sound like a bad joke: “Mom, there’s man sitting on the couch. I can see him!”…”Well, just don’t go in there.”
Yeah, that’s not exactly brilliant parenting. That’s like the stupid joke about the man who visits his doctor complaining about his elbow hurting when he bends it. His doctor responds, “Well, just don’t do that!” As much as I’d like to respond with a similar answer, I can’t. This probably accounts for my extraordinary exhaustion. This is high-level problem solving, and I’m doing it all the time because Grace is constantly walking the psychosis line. It’s very delicate.
Just this morning, she woke up in one of those moods. Two nights ago she hit a very low spot, and she’s still climbing up from her Pit of Despair. She was extremely agitated as she did her morning activities. All she has to do is get dressed, brush her hair and teeth, take her meds, put her pre-made lunch in her backpack , and either pack her breakfast, or eat it. This is often more than she can handle. She was on the verge of crying or self-harming all morning. I asked her how she felt. She tried to explain it, and then I gave her the word. “It sounds like you feel agitated.” She immediately said, “Yes, I feel agitated.” It looked to me like she was about to lose it. It’s hard to know what to say to someone who is trying very hard to practice self-control. She is trying to do her deep-breathing, but it looks more like hyperventilating. “Grace, you don’t have to lose control of yourself here.” She started to vibrate. “I’m feeling angry! I woke up this way!” I thought about it. She needed help, but I didn’t know what to say. I’ve awakened in a pissed-off state of mind before.
Last month, I tried some progesterone cream. I’m only 41, but I had a few hot flashes. I just wasn’t having it. Hot flashes? It felt like I was walking around in my own personal sauna. It was miserable. So, I thought that progesterone cream would help. Wrongety-wrong-wrong. I tried an 1/8 of the recommended dose, and two days in I thought I was going to murder everyone in my path or just set myself on fire. Self-immolation seemed like a good option to me. At least I would have had a choice about feeling like I’d been set on fire. The thing is I don’t get PMS. I never have. I might get a little weepy from time to time, but I don’t get bitchy or angry. So, this experience was an entirely new experience. I am now terrified of that progesterone bottle in my bathroom as is my husband. So, I thought about that experience and Grace feeling angry. I still had to be functional even though I was homicidal. Huh. Now there’s a thought. I went with it. “Grace, you know, I wake up from time to time in a bad way, but I have to be functional even though I’m mad. Do you think you can be agitated and functional at the same time?” She thought about it. “You are free to feel agitated. It’s okay to feel that way. Sometimes you can’t change how you feel even with coping strategies, but maybe stop thinking about changing how you feel and instead think about being functional.” That did the trick. She sat down for a little bit and started talking about what she did yesterday and fidgeted with something on the table. Within five minutes, she was under control and ready for school.
I think that this is actually a great approach for anyone because moods change. We have to learn to go with the flow particularly females because our hormones can do a number on us. One day we feel okay. The next day we might feel energetic. The next day we feel exhausted. The ebb and flow of estrogen and progesterone affect cognition, energy levels, libido, and, yes, mood. Even men have a hormonal cycle. Their cycle is just longer. So, learning to go with the flow and focus on functionality is a great coping strategy rather than trying to change the mood. There’s a saying in my neck of the woods: If you don’t like the weather, then stick around for five minutes. Moods are like the weather. They are ever-changing. Functionality, however, can be improved over time through therapy, skills training, and various self-help approaches and even through modeling in the context of relationships and mentoring. It’s an idea in any case. It worked this morning.
As always, it’s one day at a time. One moment sometimes.