3 am. I should be sleeping. But I cannot sleep. I cannot shut off my brain. Or my worry.
We are here again.
I am here again. Dealing with a broken system that would rather pass judgement, make unreasonable demands and hold needed and necessary medication hostage.
I am my son’s biggest advocate. But I shouldn’t have to be. Not now. Not anymore.
“He has substance use disorder, and that makes us concerned that he will become addicted to his meds. So we are going to take him off of them.”
“He needs to go to art therapy to learn how to channel his creativity and to learn life skills and until he does that, we won’t be prescribing his meds.”
“The treatment team met this morning and we decided that your son needs to participate in group events, and he needs to be working fulltime. If he isn’t doing those things then he doesn’t really need his meds. Meds are only for those who are working and need to concentrate.”
Are you kidding me?? This is seriously f’d up!
How irresponsible! No psych provider should be this irresponsible.
I countered every lame excuse the lead case manager had for why my son was being taken off meds. Every 2 weeks they were going to drop the dose until he was off of them. But these meds are necessary…..
If he was becoming addicted to the meds and that was going to be an issue, wouldn’t he seek increases in his dosage? He is only asking to be kept on the current dose, which is lower than his dosage for 13 years. How is that concerning to her or the provider? And demanding that he do certain things they want him to do, without any conversation with him or consideration of how these affect him, or he won’t get his meds is absolutely irresponsible. Necessary meds should not be a bargaining chip. They are necessary for everyday function. Holding meds hostage is wrong. She didn’t like hearing that.
So, here we are again. He has been without his meds for a week because he missed an appointment in December. It is now February! Did they tell him, the many times he called the nurse to see what was going on? NO. Did they tell me when I called and talked to his case manager to see what was going on? NO. Did anyone try to contact him after the missed appointment? NO.
I had to go in person to sit in the waiting room to find out what was going on. That was 2 days ago. That is when they finally said something.
The lady I talked to said my son was lucky. His provider had an opening the next afternoon for a phone appointment. He would have to wait another day for her to prescribe his meds. But he had a little hope…. I had a little hope that this would get fixed. He was lucky right?
All hope disappeared the next afternoon when my son called after his phone appointment. Here we go again, he said.
I know mental illnesses are hard to diagnosis and treat. They are invisible illnesses. And each patient is different. Each treatment plan has to be tailored to the individual being treated. That is why, when the balance is found that works, you don’t change it!
The luck of the draw for my son was being assigned a provider, a psych nurse, who does not believe in medication to treat mental health illnesses. She believes that mental illnesses are a shortcoming in a person’s character. She believes that anxiety, clinically diagnosed anxiety disorder, is treatable by behavior therapy alone. No medication necessary. Especially when the patient is also an addict (who is currently not using and completed treatment 4 ½ years ago). For most of us, pushing through the panic is how to handle things. But not my son. That makes it worse. He doesn’t just get anxiety, like I do, when facing some event or situation. He is anxious ALL day, EVERY day. It is constant. And things do make it worse. So, let’s take his meds away. (this is what I learned about his anxiety when he chose to be taken off the meds in 2017) Seriously?!
My son was finally stable. The right balance of meds was working. Well…. that just all flew out the window!
I should have seen it coming. Her first appointment with my son, she told him she was going to remove his ADHD meds and his anxiety meds. The first appointment. Did she even read his case file? Did she read beyond his substance use disorder diagnosis?
I don’t get it. I don’t understand.
It doesn’t matter that his diagnosis for his mental health illnesses predates his addictions by many years. This current team believes that his addictions caused his mental health illnesses. They do not understand that untreated mental illnesses often leads to self-medicating and addiction.
I am scared. Really, really scared. We have been down this road, with judgemental uncaring providers, too many times to count. I know where this road leads. And I am petrified.
So, I can’t sleep. Too many worries in my head. My husband needs to concentrate on his health. My son has been worried about his dad. And I am worried about them both.
When will this get better? When will self-righteous, judgmental psych providers stop changing my sons life? Our lives? If my son had diabetes, or high cholesterol, or chronic lung disease or a myriad of other physical illnesses, they wouldn’t withdraw his meds because he wasn’t behaving the way the provider dictated. So why should mental illness be any different? Why wouldn’t my son being stable be the outcome that is sought?
Today is day 3 of dealing with this. I am supposed to get a call back sometime today to let me know how they are going to fix this. I don’t have much faith in them right now….
This system is very broken. And it is most broken for those who need it the most—those who cannot afford to pay for treatment, those who rely on government providing treatment—those without money, the homeless, and the addict. When will we finally fix this? When we will finally see mental illnesses in the same light as physical illnesses?
Just breathe….. been here before…. My son is determined to not let them derail all his progress….. I will get us through this again…… I will never stop fighting!