Saturday, February 15, 2014

Thank You

I wanted to take the time today to say thank you to all of you who responded to my post about Thomas' therapist discussing stopping meds with him and I. I was overwhelmed by your words of support and I am thrilled that you supported me and offered suggestions. Admittedly I am still shaking my head and when I talk to people about it they also shake their heads and feel outrage about the whole thing. I was really wondering how it was all going to be received as I am aware that ultimately it is not my decision what Thomas chooses to do about his meds. What I can tell you is that my record up to this point is that I have been included in those decisions by Thomas and by his doctors so I didn't feel like I was overstepping. I think the conversation might have gone much differently had I been given a heads up ahead of time. I always try to make an attempt to learn the side of someone who has a differing view than mine because I am the first to admit that if I am wrong then I am wrong. In this case, the way it went down, I don't feel wrong about it at all. If Thomas had been through many many trials of meds and they had all failed then that discussion would need to be had with Dr. N., his psychiatrist, who prescribes the meds and decides with both Thomas and I what the best course of action is. I no longer have doubt that there is something out there to help Thomas and I'm fairly convinced that the Latuda may be the answer right now, until it stops working, and even then, with Thomas' blessing, we will try something different. At the extreme end of all of that is still the option of ECT (electroconvulsive therapy) or TMS (Transcranial Magnetic Stimulation) both of which have been shown to have an effect on psychosis. Those options are far down the road for Thomas, if they even ever become an option, but they are there.

Next, someone (maybe more than one person) asked about Thomas' blog and/or his opinion of the whole meds issue. I will say first that Thomas doesn't write a blog so learning from him that way is not possible. Even if he had a blog it would most likely be about playing video games since that is what consumes his life. As for his opinion on meds, I asked him about how he felt about what was discussed in therapy and he told me that he wants to stay on his medications. He is still acutely aware of what life was like without medications or when he was on meds that weren't working. He just lived through a really tough couple of months that began with his Geodon stopping working. Then and now he chose to try new medications and to my surprise even was enthusiastic about finding something to help him. In a lot of ways he very much knows he's sick and that it's pretty serious and that it is a lifelong illness so because of that he knows he's going to need some kind of help along the way. Every time I bring his pills to him, I look for exasperation or refusal of them. I am always keenly aware of his state of mind when meds are presented because I want to respect what he wants. That's not to say that if he refuses that I won't state my case for staying on them because I will. A perfect example of his desire to continue meds though was just yesterday. I have been spacing his Latuda away from his clozaril to lessen side effects. I talked with him yesterday about combining them again as prescribed and he agreed and did so knowing that he might experience scary side effects. As it was, he did experience more tiredness, some dizziness and low blood pressure but nothing was anywhere near a dangerous level and he never once complained about any of it.

Finally, I had to laugh albeit a sad laugh when I discovered yesterday that Thomas was having a really bad day. His curtains were closed in his room, he was moody and agitated. While I know we all have bad days, what was "funny" to me was how I had earlier in the day fired off an email to his therapist talking about how great Thomas is doing and no sooner did I do that, I was presented with a grumpy, suspicious kid. Isn't that the way it goes though? It's akin to feeling sick and finally deciding to go to the doctor only to arrive in the doctor's office and suddenly feel better. Sometimes I think there's some sort of cosmic law governing things like that.

So, thank you all--again--for your support yesterday. It meant the world to me and gave me a lot to think about. I am grateful for all of you and grateful that I have this forum to share my story with you all. My hope, as always, is that it helps others too. That was my goal when I started this blog and it remains my goal even today.

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