Transition

Being a parent is hard. It's hard in ways that no stupid magazine article or book with several credentialed authors can describe to you. There's no way to prepare for it. You can read what it's like to climb a mountain or give birth, but you have to walk through it to know how far you'll be pushed and what you'll be willing to do to survive the experiences. Parenting = same thing.

Things are going pretty darn well right now I'd say. The providers N is seeing are great and I feel like we're in a good place now. Dr. G is overseeing the ARNP (SC) that we're currently working with, so that's a little weird. I am increasingly grateful that he won't be working directly with us and that there will be a knowledgeable filter between him and us. Little things, like during our last appointment when he said that if N didn't seem to get better that we'd have to 'look at a personality disorder'. When SC mentioned personality disorders, he said, "We don't even look for them in teens because you all bounce between personality disorders." It made me wonder why Dr. G ever brought it up? He's an M.D. where SC is an ARNP, and I trust SC far more than Dr. G.

SC decided to take N off the olanzapine which is a mixed bag for us. The never-ending 'what will this mean' cycle of thought, but we're getting better at hopping off of the future-telling train that really goes no where good. It's not like we ever imagine that he'll be better and have a normal life. We can only ever imagine at hte very least, that we'll be worried about this for the rest of his life, and at worst, that he'll kill himself, hurt someone, end up in prison or a mental hospital or god only knows what. The imagination is brutal and unrestrained. Sometimes I want to punch it.

He's apparently having nightmares which I think I will suggest to W (his therapist) that they start really addressing. The providers are encouraging us to get familiar with DBT (I call it diabolical therapy because I just can never remember what it's called lol), Dialectical Behavioral Therapy. It's based in mindfulness which I'm familiar with. I haven't read a single word about it. I feel like I'm full up on this whole area of my life and can do no more than I'm doing, and I fear that I'm cheating him of a knowledgeable person at home who can help hold down the structure of what the providers feel would benefit him most. It's a lot of pressure.

Ultimately we've learned a lot and every time he has a life experience he learns that he can have the experience and recover, and go back to baseline. That's great, it's hugely educational for him and definitely indicative of healing. We are learning not to take every single panic attack for a doomsday event and let it run our lives, but rather let him have time and space to recover, and then get him back in the game of life.

All of this emotional management still leaves me overwhelmed at times but it's all worth it- he's worth it. I wonder what it must be like to be in my life, when I'm having a panic attack or anxious or whatever.

Anyway, I feel like we're turning under the wheel of transition, in several areas of my life, and it's uncomfortable and I don't know the future and I'm not sure I love the present. There's a lot of joy and opportunities to love each other and I have to just keep focused on that, and know that the discomfort passes.

Anxiety

It's interesting (I am always fascinated by this experience called 'humanity') how I can feel pretty chilled out right now, but be running in some high anxiety. It's becoming an issue for me. I feel like there was a time in my life before anxiety and panic attacks and adrenal fatigue, and it ended in 2012.

I'm coming up on my 3 year anniversary of finding out I had cancer. In some ways I think I'm ridiculous for being so sentimental about something that sort of.. came and went. In other ways, it rocked my world and changed me, and continues to, so it makes sense to acknowledge it.

It sure isn't helping me with all that's going on at home. I am feeling like we've let the boundaries slip and we're seeing the immediate result of that with the boys. I'm feeling very close to R, we are supports for each other in ways I don't think anyone could have possibly described. I'm feeling like I want to move in different directions with my life but nothing seems clear, so I do this little Elaine Benes brown-sweater-dance  not really going anywhere but looking very animated!

We're seeing a great therapist who gives us tools to manage the anxiety and feelings of overwhelm that we're both having. At the same time, I think I need to just unload.  I'm inclined to see someone at the HMO but I don't want to have to get diagnosed with something just to get care. Why can't insurance companies just value talk therapy without requiring a diagnosis?

I'm noticing some old anxiety patterns arising -

• an acute feeling that I'm about to die, or could die, in the situation I'm in
• planning ahead for what will I know will be my untimely death
• planning ahead for R's death
• imagining scenarios that are scary and terrible but not real, feeling the fear that comes with it before I can back off and remind myself it's not real
• insomnia, fatigue
• Blech. I hate this list. 

I think I'm having a hard time not feeling trapped by all that's happening, and that trapped feeling leads to anxiety. No panic attacks thus far, which is great. I also have to remind myself (because somewhere inside me, I do know this) that this is temporary, a way for my brain to cope, that it will shift - it always does. What pisses me off is that anxiety is like Hotel California in a way, you might get out the gate now and then, but it seems like you always come back. Suck.

Aaand SCENE!

Today started out great, and now I'm just mad. It occurs to me that I can still define my day however I like, but right now I'm fucking mad and when I'm mad I need to write, so here I am. Interestingly I'd opened up Blogger earlier to write while I was all blissed out but then the stupid shit hit the stupid fan and now I'm here mad, instead.

Okay, so try to track:

Dr. G is the psychiatrist with whom we have a mis-match to say it kindly.
SC is the new ARNP who is seeing N. So let me back up and timeline this a bit:

1. Met Dr. G. Had a horrific appointment which I now see I haven't written out. Typed it, here it is. 
2. Called his boss to ask for a second opinion on the recommendations Dr. G made about this new medication he wanted to put N on. During that conversation I simply mentioned that, "we were not a match", "I left upset", and "that if someone else is available we'd be interested in changing." I did not go into details about the appointment.
3. Had second appointment with Dr. G the following week. At that point he brought up the previous appt and we cleared the air about how we felt that went down. He did not respond to anything we said. We said that we'd still be willing to see him but that we understood if he did not want to see us. He said, "It's out of my hands, it's up to (our HMO) now." He did not say that he'd see us, or not see us, just absolved himself of answering.
4. We're told it will be several weeks before SC is available so we make appointments with Dr. G in the meantime. We feel fine with this and are surprised he's game for it but there it is, appointments made.
5. We are called and told the appointments have been rescheduled to be with SC who is suddenly available earlier. Sweet.
6. N sees SC and this is a great match. SC lets N know that he'll be out the next two weeks and leaves it up to R and N to decide if they want to see someone in the meantime. R feels ill equipped to know if we're on good enough footing to just not be seen for two weeks so elects to be seen by Dr. G for those two appointments while SC is gone. SC accompanies R and N to the front desk to make the appointments, at which time they call Dr. G to make sure he's willing to see N. He is, so the appointments are made. One for tomorrow, and one for next week.
7. Today I get a call from the HMO to confirm the appointment this week with W, the therapist, which I mix up, thinking they're talking about his appointment tomorrow. I call to clarify and say, "Our appointment is at 10:00 tomorrow with Dr. G." She says, very slowly and sort of confused, "No... that appointment was canceled." I say, we did not cancel it, as evidenced by me calling to confirm the appointment time. She puts me on hold for a long time, comes back and tells me she's waiting to speak with her manager, and then puts me on hold again. She sounds a little grumpy and she's very professional, I have the inkling that something is going down at that end she's unhappy about. I'm getting very angry. She puts me through to W, the therapist. Why the hell am I talking to W? I need to talk to someone who can tell me why the fuck these appointments were canceled and by whom, and why, and why no one bothered to tell me about it? The appointment lady is in total agreement with me and patches me through to W. I explain the timeline to W and basically rage and vent. She agrees that my concerns are legitimate and offers to put me through to the Department Manager person, and now I'm waiting for him to call me back.

So here's the thing. I feel like I'm being jacked around by this guy. The appointments didn't magically just cancel themselves, and I would have taken N out of school, driven up there and not known these appointments were canceled. Someone canceled them.

If Dr. G doesn't want to work with us he could have said no, and he could have asked the front desk to just let us k now he needed to reschedule and that we'd see SC when he got back from vacation. Instead, someone canceled these damn appointments. It all sounds really stupid as I write it out but this has been going on with this guy for too long. I hate that I feel like a picky, noisy patient. I hate that the people who are supposed to help my child are literally putting obstacles between him and his care. I hate being asked if I "have any concerns" about what's going on with the medicaiton because how the fuck would I know?! I can't ask him questions because I do not have a context for his answers. He tells me he's having harming thoughts and all I can do is think, oh shit! Where the provider can ask more questions and paint a picture of it and be able to say, "In light of these things, we're okay, or we're not okay." So expecting us to navigate that is ridiculous.

IN the meantime there's no one else in distance who can see N during these next two weeks so whoever canceled those appointments has ensured that we're on our own with no provider for the next two weeks. This is my CHILD. This is not my car, or my pet. This is my kid. The providers are our lifeline right now. They breathe air into us as we suffocate with the heaviness of all of this, by giving us context and information, and hope. If we don't have allies on that side, what do we have?

So this needs to be straightened out ASAP and it's at the point now where if I find out for sure he canceled those appointments, I will file a complaint against him. This is ridiculous. At the end of hte day we are compliant patients who show up, take the medications, practice the exercises and are showing improvement. We are clear in our communication, compassionate to ourselves and to them with our boundaries, we show up on time, pay our co-pays, and even give the benefit of the doubt far beyond what is deserved. So they need to figure this shit out.

New provider, new status

Things have been so good. Solidly good. The set backs just feel like normal life now and don't dump adrenaline in my system in high doses. Instead, it's more like fender benders. A little awareness, tending the details, checking the things off the list, but no one's hurt and no one's bleeding out. Ahhh.

N has needed to come home from school a couple of times and we're just resigned that until we have a better adjustment on his medication and rhythm, that it'll just be like this. We're not sweating his advancement to 9th. We're not sweating his GPA, or his attendance record. He's alive, he's happy, his self-esteem is ridiculously awesome, he is practicing brilliant self-care and is very self-motivated. He's alive, and happy to be so.

Today he met with S, his new psychiatric ARNP. Apparently he's great (I wasn't there), and as they reviewed N's symptoms, N reported that he 'no longer feels the major depression disorder diagnosis'. He's not identifying as depressed. That's enormous.

Enormous.

I cried when I heard that, because wow... I'm learning that mental health is a rhythm of its own. I've certainly felt depressed and then recovered, I've certainly felt inclined to self-harm and recovered, or a desire to run away and abandon everything, and then recovered. The trick isn't that he never feels depression again, it's that he's survived the experience and recovered brilliantly, and now has a knowing that if (and when) this happens again, he can bounce back. He'll know he can, because he did bounce back. And we know it too, now, that this isn't some kind of death sentence, keep him alive as long as we can squeeze out, be grateful for every second, like we thought. Who knows what it is. We shouldn't try to prescribe it- it just is what it is right now. And right now, it's freaking amazing. :)

Maniacal cackle

Yesterday was a solidly good day. I daresay, great. I am learning about where I am at in all of this, every day, and yesterday was revelatory, too.

I was able to just let go, be in the moment, and laugh. I don't think N and I have laughed that much in weeks. I certainly haven't. There were times when I could feel myself wanting to just push the funny a little further, so I could keep feeling it, but into weird places that would have just been awkward. When the joke's over, the joke's freakin over, and stop trying to breathe life into it! Fortunately I think I caught myself in time so I didn't look like an idiot, but whatever. Sometimes you gotta be the idiot.

He hurt his foot jumping over a railing and had to take him to urgent care. I saw him power-down like a little battery being sucked dry after the olanzapine. I don't like it, but I'll take it over the alternative, at least for now.

The psychiatrist decided not to see us, so even though I made four weeks of appointments, he apparently changed them to the new guy that's coming on. I'm ready to have a provider that doesn't skeev me out the way Dr. G did. (Did I write about him? *shudder*)

I'm ready to have another good, happy, relaxed day today. I'll take whatever comes. Resiliency is built in the in-between moments, not in the times of stress. I bounce back like a motherfucker.