Daily Archives: October 22, 2016

Devilation Long Post

Yes. It okay to groan and say, “Crap, Morgue is making up words again. WTH is devilation?”

Frankly, it is my blend of deviation + devil. Because the tiniest deviation sets off my panic receptors, sends my brain reeling, paranoia soaring, and quite frankly…makes me a little bonkers. Therefore deviation must be caused by the devil himself.

Case in point: yesterday’s shrink appointment. I normally don’t have Friday appointments so I was unprepared for the deviation from the normal protocol. Instead of my usual check in point, I had to go the opposite side. Where I was made to stand at the glass 5 minutes even though three different staffers saw me standing there. Anxiety mounting, paranoia going willy nilly. Instant panic. Because THIS IS NOT THE RIGHT WAY, THIS IS DEVIATION. Devilation.

It occurred to me with all the changes and all the unfamiliar staff members, what if they changed shrinks on me and didn’t tell me? NOOOOOOOOOOOO.

By the time the nurse took me for weight and blood pressure…my normally perfectly normal pulse…was up 20 some odd points. Because…Panic. To top it all off I had shark week cramps which had kept me in bed sleeping most of the day and I was all sorts of off kilter.

I was further thrown when the shrink I’ve been seeing for 2 years addressed me as Miss (last name) rather than the normal “Niki.” WTF? Three months without an appointment and suddenly he’s forgotten me and has to go formal?

All in all…it was a decent appointment. Though the longer he let me talk and he listened…all I could see was the clock ticking, knowing anything over 10 ten minutes, the insurance gets charged over $250 for a 25 minute session. And insurance companies may be the devil, but I never want to use more than I absolutely need. So I felt panicked and paranoia and guilty.

He asked how I was doing. I said “sucky”. Which is a highly technical term in the psych field, ya know. I explained all the crap that’s gone wrong in recent months and how while not in the bathroom sobbing…I am definitely not coping well.

He observed, “You are obviously not doing as well as you were.”

Yep. Ya know, the four days without a shower greasy hair, the broken out skin (thanks stress and pms), the fact I was on full alert as if awaiting a ninja attack…I explained about the daily challenge of my daughter. Who this week started yelling DIE MOMMY DIE… Three minutes later,she hugged me and apologized. Then went to screaming how I am the worst mom on Earth. It’s hard enough to balance my own mental shit, now I walk on eggshells with her.

Shrink suggested something (not sure of spelling) neurotonin? as an excellent possibility for mood stabilization, depression, and anxiety.

I did not dismiss it out of turn but when he said “We’ve tried everything else.”

Oh…That was when my inner badass emerged and I said,”There’s one thing none of you have tried in the 7 years I’ve been coming here. Draconian as my old doc was, this was the ONLY thing he got right.”

So Dr. B asked me what it was we could not have possibly discussed already.

I explained about how my functioning was so much higher at the 1mg Xanax three times a day. I jumped on the defensive because I’ve had six docs in a row fight on even giving me Xanax so I was prepped for a “I’m not a junkie or selling my pills, this is just what worked well.”

I nearly hit the floor when he said, “I can definitely raise your Xanax, I am fine with that because I trust you.”

Well, fuck a fancy bag. First doc in ten years that’s been willing to hear me out and go there.

He was baffled how it’s never come up before and I hung my head, wringing my hands and tried to explain all the trouble I have had over the years with EVERY doctor from their center over the Xanax matter. You get to a point and think, oh, why bother when you’re gonna be treated like a junkie and shot down.

He reiterated, after making it clear he almost NEVER prescribes Xanax, that he trusts me because I am a straight shooter and I am doing my best to get well. Ya know, that recognition felt pretty damned good after having been reduced all those years to little more than a “statistical addict.”

I told him that of all the anti anxiety drugs and doses…this was the one that helped me the most. And I elaborated about how baffled I am by Adderall and Xanax being considered “party drugs” and abused. There is NO high for me. It just corrects what is wrong with my brain. He agreed and explained that the people who get high have all the normal levels so taking these meds does get them “high” whereas my serotonin levels and such are abnormal so the meds just put me where I should have been born.

I briefly touched on my frustration with being on disability and being broke and wanting so desperately to work…That I’ve looked into call centers from home, virtual assistant work, anything to get off disability and give my kid a better life. To which he said, “I see how hard you try and how much you struggle. The thing is, Niki, you are very smart. I have schizophrenics who are highly functioning so they can’t get disability. If you were granted it, you demonstrated your efforts and you EARNED it. And it’s a pittance, anyway, so you’re not living in luxury.”

I FUCKING LOVE THIS MAN.

S0 in spite of the devilation upsetting me so much…It was a good appointment. He raised my Xanax, kept all else the same, set me for two months, and agreed if I am still depressed then and my functionality lowers any more…he will increase the Pristiq. I am pleased with this.

Already, three 1mg doses in, I am feeling steadier. Is it a placebo effect? I don’t think so. I think this would have rescued me years ago if it weren’t for all the narrow minded shrinks grouping everyone together as pill junkies. I don’t know that it will help the depression,but if it calms the anxiety…Praise the sacred pegacorn.

On other notes…Twice this week I received sweet gestures of kindness from two people only known via internet when they commented on my blog. One I struggled with because I know they are not in any better position than I am to spare $. I didn’t want to seem ungrateful or rejecting but in the end, I really felt they should take that wonderful offer and spend it on themselves for they deserve it. On the other hand, the other gesture offered came from someone who is apparently in a better position and approached out of the blue after reading a post of mine…And I agreed to accept that offer for it was extended out of the blue for something I want very much and simply can’t afford. I worry I might have hurt someone’s feelings but truly…When someone struggles as much, if not more than me, I feel sooo lousy taking from them.

(Unless my cats need vet care, then we all know I will rob a newborn cos, well I am insane for cats.)

The news with my uncle has not been great. Twice, the hospital scheduled surgery but he is so compromised by chemo, they’ve decided there is less risk to not operate right now in spite of his aneurysm (however the fuck it is spelled). The local hospital insisted the aneurysm had grown so they transferred him to big hospital out of town, now that hospital says he’s in less danger to leave him be for now. WTF? Apparently our local hospital, currently being sued by a woman whose husband was sent home and later died due to their negligence, wants no responsibility for high risk patients so they farm them out but still send a bill triple the costs of a normal urban hospital.

This shit is infuriating.

R requested something of me yesterday I found truly nutsy kookoo. He asked me to bring home this flat screen main board (motherboard) and bake it in my oven. I was like WTF? But I did it anyway and all the kids were so amazed  that I baked a Tv part…Guess what? He popped it back into the TV and now it actually works. Something to do with the ball grid array technology, the oven apparently heats it up and makes things work properly. Now I can say in addition to broiling my baby Wet and Dry when I was 8…I’ve baked a TV motherboard.

Today was going swimmingly, aside from my inability to get my ass out of bed because well, I was cold and some dreams were annoying ( R making more demands for parts, me hitting my old car with my current car) and some sex dreams (can you say, I went off my lithium and my nethers work again???)…Stepmonster stopped by to give the cats some of their leftovers. She ordered Spook to pick up the yard and after that…Spook was all about cleaning. She did my cat boxes, rinsed the dishes I washed…

And then one of her friends showed up and since then it’s been 4 kids screeching and bickering and me wanting to yank out clumps of hair. No deviation here, same old same old.

I read a FANTASTIC article concerning adult ADHD that I would at least like to share the link to with you guys and hope anyone who struggles with this or thinks they might will read it.

Article.

Not to perpetuate this already too long diatribe but a couple of excerpts really resonated with me. Read, don’t read,but I want to throw it out there.

Duane Gordon was a project manager at a firm in Montreal when his boss asked him to run the Monday morning meeting. “I was excited because this was obviously a test of [whether] I could eventually be groomed for taking over the department,” he recalls.

That discussion took place on Friday afternoon. On Monday, everyone showed up for the meeting, wondering where the boss was, including Gordon. “It was completely gone from my memory that I was to run this meeting,” he says. When the boss didn’t show up, everyone went back to their desks. Later in the day, the boss came in and asked Gordon how the meeting went. “I said, ‘We didn’t have the meeting, you weren’t here. I figured we’d have it when you came in.’ And he looked at me completely dumbfounded, like, ‘How is that even possible?’”

He explains: “You never know when something is going to go horribly wrong. There’s every chance it will. If my boss calls me, I wonder what went wrong. If I get mail, I wonder if I’m going to jail. You assume and expect that at any moment you’re going to get sideswiped by something, and it’s something you did or forgot to do that is going to have severe repercussions.”

describes having ADHD like this: “It’s a chronic sense of overwhelmed. It feels like you’re being attacked in all areas of your daily life — like sounds, and lights, and sensory things can be overwhelming,” Matlen is the author of Survival Tips for Women with ADHD.”

She says she hit a wall after she became a mother. “And that is what we see a lot with women, once their lives become more complicated, they can’t stay on top of things. Both of my children turned out to be hyperactive. I couldn’t keep up. I felt like a total failure, someone with two college degrees couldn’t do something as seemingly easy as putting dinner on the table every night or keeping the house organized.”

She says it took a toll on her self-esteem, “Like, what is wrong with me? There’s people with five kids who can juggle all the responsibilities of taking care of a family. Why couldn’t I do it with two? Am I dumb? Am I incompetent?”

She wants others with ADHD to understand what she now knows: “You’re not broken, you’re not hopeless, you just need a little extra help.”

“I feel like a healthy person when I wake up in the morning and continue with my day, but I do have a lot of thoughts in my head. I’m fidgety a lot. I can’t sit still; I can’t get comfortable in a chair. Maybe I’m a little emotional. ADHD can [do that]. Sometimes I’m feeling good and then someone says something bad to me and next I’m feeling kind of down.”

She says her condition has caused negative interactions with co-workers and managers. “People don’t understand the difficulties you have when it comes to focusing and distractions. “Instead of excelling, you’re always [considered] mediocre,” she says.

Okay, that all being covered…Spork of Fortitude for all who stayed with me.

***Disclaimer***

I am NOT a doctor and cannot tell you whether you have ADHD or your symptoms also stem from anxiety/bipolar/depression. ONLY a qualified doctor can make that determination. Still, if you see yourself in any of that particular article, it cannot hurt to talk to your doctor about it. Yes, adults can have ADHD. Many of us are simple ADD, lacking hyperactivity yet having ping pong thoughts. Seek professional help and know…You are not alone.

How Many Mental Disorders Is Too Many?

How many is too many? This is what I asked myself when a psychiatrist – who I was seeing temporarily while my usual was on paternity leave – looked up from a stack of books and a database on his computer and said to me, “This is really complicated.”

When I asked him what he meant, he seemed a little worried when he said, “Your diagnoses and your medications are very… complex.”

I knew that. Every clinician that opened up my file knew that. Every pharmacist that ever filled my prescriptions. Every friend that finally realized how much energy goes into being a mostly-assembled Sam Dylan Finch.

With my bipolar diagnosis reinstated after a hypomanic episode triggered by Zoloft, it could now rejoin my growing list of neuroses: borderline personality disorder, obsessive compulsive disorder, agoraphobia, substance use disorder, and generalized anxiety and/or ADHD depending on which clinician you ask.

This doesn’t even capture the psychotic and dissociative features of a few of the illnesses I deal with.

Some people would call these “co-occurring diagnoses” on a good day but I would actually just call these a straight up clusterfuck.

People like to tell me that “it’s all just labels” and that the words are ultimately unimportant. But they weren’t there ten years ago,  when I was a teenager that fantasized about ending my life, tormented by obsessive thoughts and deep depression. Back then, the only thing I wanted was to understand what was wrong.

My psychiatric diagnoses have given me that understanding, and affirmed that it wasn’t just in my head, that it wasn’t made up, that I wasn’t alone.

People can tell me that my diagnoses are just words at the end of the day, but those words are important to me, and that’s what makes them important. And the impact of these disorders is something that I have to live with every minute of every day – so why wouldn’t it be critical to name something that’s so pervasive in my life?

(Honestly, when people tell me it’s just words, I laugh. If you woke up to the sound of a chainsaw every morning with no explanation, would you ignore it altogether in favor of just saying, “Well, it’s just noise”?)

But I would be lying if I said my psychiatric diagnoses always make me feel empowered. The truth is that while I am glad to have a name for a once invisible battle, I’m also afraid.

I’m very afraid. I’m afraid because, like many clinicians have told me, this is complicated. Complicated to understand. Complicated to treat. Complicated to manage. I’m afraid that maybe there’s such a thing as “too mentally ill” or “too many mental disorders,” and that there will never be a “normal” for me – that I’ll always be swimming upstream.

I’m afraid of being hospitalized again. I’m afraid of being hospitalized again and again, because statistically this is likely. I’m afraid of attempting suicide again. I’m afraid of attempting again and again, because this, too, is possible and maybe even likely.

People often tell me that I’m not a statistic. I know this is true. But we can’t also pretend that statistics have no bearing on what my future might look like. I can’t ignore the fact that I am vulnerable. And I go to bed every night knowing this – knowing that I have a lot of good reasons to feel unsafe, even on my best day.

The more diagnoses I’m given, the more overwhelmed I feel.

I am mistrustful and fearful of my own mind – how it seems to always be working against me, how even my best efforts are sometimes not enough to stay in control. I never seem to know what’s real and what’s part of an illness.

I don’t know where each illness stops and I begin. I’ve spent a lot of the last two months confused, feeling claustrophobic in my own head, like I need to get out of here because there’s no room for me, like the wind is constantly being knocked out of me.

In conversations about mental health, we often talk about people who have one or two disorders. And I’m usually somewhere on the sidelines, wishing people like me were more visible – people who have so many diagnoses, they sometimes lose track of themselves, sometimes lose themselves to the fear of what they’ve become and could become.

I am an optimistic and determined person on the whole, and I still lose myself to that fear from time to time. When my psychiatrist quietly acknowledged the complexity of my trauma, I wondered if it’s possible to be so mentally ill that you become impossible to care for, impossible to help, impossible to love.

I spend a lot of time worrying that I can’t be loved.

In a society that tells us we’re broken if we have one mental illness, what happens when you have six?

Can you ever really be honest about who you are and what you’re going through without seeming too crazy? Too hopeless? Too much? This is the perpetual question for me, as someone who is both a person offline (go figure) but also an activist and writer online, who wants to create the space for people to be authentically themselves, but has to navigate the same stigma, too.

I think with all of the fear that I’m experiencing lately, I’ve finally gotten to a point where I’m tired of being isolated like this. I want to create a space for all of us to own how terrifying it is to be told we’re “complicated.”

Being complicated sucks. Being complicated hurts.

I remember that when I was initially diagnosed with just depression as a teenager, I was told by clinicians that my depression was very treatable, always emphasizing a positive prognosis and long term goals.

At this point in my life, when I meet clinicians, we only ever talk about today – we never talk about the future in any capacity. I think because neither of us knows what to say.

And that’s what my psychiatric journey has looked like: a lot of subtle ways in which it was communicated to me, with each new doctor and each new name, that being “complex” means difficulty – difficulty treating, much less supporting or affirming.

But I’m tired of apologizing to clinicians, to friends, and even to readers for being messy. For having more issues than National Geographic. For giving “certifiably insane” a whole new spokesperson. And I know so many mentally ill people with countless diagnoses who are equally exhausted, trying to package things in a more presentable way so people will accept them.

Sometimes people have three, four, five, six, seven, eight, you-name-it diagnoses and if we aren’t making room for those people to show up authentically, we are failing the mental health community as a whole.

This work isn’t about making spaces for some of us. It’s about making room for all of us.

Having co-occurring diagnoses is a scary place to be. Sometimes it’s a hopeless place to be, especially when your clinicians seem a little defeated themselves and the people in your life don’t know how to help you.

Sometimes (often) people don’t even believe me. Sometimes they see it as a chance to write me off as beyond repair. Sometimes my mental illnesses go from being a concern to being a joke. Sometimes I’m dehumanized and pathologized to the point where I’m seen exclusively as a case study. In my life, I’m consistently reminded of how people have no idea how to treat other people with co-occurring diagnoses, especially as they increase in number.

If we can’t create support for folks like me, where else are they going to go? When else can they be themselves?

Psychiatric labels can be important to us, scary to us, even empowering to us – for me, it’s been all three. But one thing they’ll never be is the sole determiner of our worth. We are whole people with value, no matter how few or how many diagnoses we have.

That’s the truth. And it’s a truth we need to make sure everyone – especially mentally ill folks – know.


How Many Mental Disorders Is Too Many?

How many is too many? This is what I asked myself when a psychiatrist – who I was seeing temporarily while my usual was on paternity leave – looked up from a stack of books and a database on his computer and said to me, “This is really complicated.”

When I asked him what he meant, he seemed a little worried when he said, “Your diagnoses and your medications are very… complex.”

I knew that. Every clinician that opened up my file knew that. Every pharmacist that ever filled my prescriptions. Every friend that finally realized how much energy goes into being a mostly-assembled Sam Dylan Finch.

With my bipolar diagnosis reinstated after a hypomanic episode triggered by Zoloft, it could now rejoin my growing list of neuroses: borderline personality disorder, obsessive compulsive disorder, agoraphobia, substance use disorder, and generalized anxiety and/or ADHD depending on which clinician you ask.

This doesn’t even capture the psychotic and dissociative features of a few of the illnesses I deal with.

Some people would call these “co-occurring diagnoses” on a good day but I would actually just call these a straight up clusterfuck.

People like to tell me that “it’s all just labels” and that the words are ultimately unimportant. But they weren’t there ten years ago,  when I was a teenager that fantasized about ending my life, tormented by obsessive thoughts and deep depression. Back then, the only thing I wanted was to understand what was wrong.

My psychiatric diagnoses have given me that understanding, and affirmed that it wasn’t just in my head, that it wasn’t made up, that I wasn’t alone.

People can tell me that my diagnoses are just words at the end of the day, but those words are important to me, and that’s what makes them important. And the impact of these disorders is something that I have to live with every minute of every day – so why wouldn’t it be critical to name something that’s so pervasive in my life?

(Honestly, when people tell me it’s just words, I laugh. If you woke up to the sound of a chainsaw every morning with no explanation, would you ignore it altogether in favor of just saying, “Well, it’s just noise”?)

But I would be lying if I said my psychiatric diagnoses always make me feel empowered. The truth is that while I am glad to have a name for a once invisible battle, I’m also afraid.

I’m very afraid. I’m afraid because, like many clinicians have told me, this is complicated. Complicated to understand. Complicated to treat. Complicated to manage. I’m afraid that maybe there’s such a thing as “too mentally ill” or “too many mental disorders,” and that there will never be a “normal” for me – that I’ll always be swimming upstream.

I’m afraid of being hospitalized again. I’m afraid of being hospitalized again and again, because statistically this is likely. I’m afraid of attempting suicide again. I’m afraid of attempting again and again, because this, too, is possible and maybe even likely.

People often tell me that I’m not a statistic. I know this is true. But we can’t also pretend that statistics have no bearing on what my future might look like. I can’t ignore the fact that I am vulnerable. And I go to bed every night knowing this – knowing that I have a lot of good reasons to feel unsafe, even on my best day.

The more diagnoses I’m given, the more overwhelmed I feel.

I am mistrustful and fearful of my own mind – how it seems to always be working against me, how even my best efforts are sometimes not enough to stay in control. I never seem to know what’s real and what’s part of an illness.

I don’t know where each illness stops and I begin. I’ve spent a lot of the last two months confused, feeling claustrophobic in my own head, like I need to get out of here because there’s no room for me, like the wind is constantly being knocked out of me.

In conversations about mental health, we often talk about people who have one or two disorders. And I’m usually somewhere on the sidelines, wishing people like me were more visible – people who have so many diagnoses, they sometimes lose track of themselves, sometimes lose themselves to the fear of what they’ve become and could become.

I am an optimistic and determined person on the whole, and I still lose myself to that fear from time to time. When my psychiatrist quietly acknowledged the complexity of my trauma, I wondered if it’s possible to be so mentally ill that you become impossible to care for, impossible to help, impossible to love.

I spend a lot of time worrying that I can’t be loved.

In a society that tells us we’re broken if we have one mental illness, what happens when you have six?

Can you ever really be honest about who you are and what you’re going through without seeming too crazy? Too hopeless? Too much? This is the perpetual question for me, as someone who is both a person offline (go figure) but also an activist and writer online, who wants to create the space for people to be authentically themselves, but has to navigate the same stigma, too.

I think with all of the fear that I’m experiencing lately, I’ve finally gotten to a point where I’m tired of being isolated like this. I want to create a space for all of us to own how terrifying it is to be told we’re “complicated.”

Being complicated sucks. Being complicated hurts.

I remember that when I was initially diagnosed with just depression as a teenager, I was told by clinicians that my depression was very treatable, always emphasizing a positive prognosis and long term goals.

At this point in my life, when I meet clinicians, we only ever talk about today – we never talk about the future in any capacity. I think because neither of us knows what to say.

And that’s what my psychiatric journey has looked like: a lot of subtle ways in which it was communicated to me, with each new doctor and each new name, that being “complex” means difficulty – difficulty treating, much less supporting or affirming.

But I’m tired of apologizing to clinicians, to friends, and even to readers for being messy. For having more issues than National Geographic. For giving “certifiably insane” a whole new spokesperson. And I know so many mentally ill people with countless diagnoses who are equally exhausted, trying to package things in a more presentable way so people will accept them.

Sometimes people have three, four, five, six, seven, eight, you-name-it diagnoses and if we aren’t making room for those people to show up authentically, we are failing the mental health community as a whole.

This work isn’t about making spaces for some of us. It’s about making room for all of us.

Having co-occurring diagnoses is a scary place to be. Sometimes it’s a hopeless place to be, especially when your clinicians seem a little defeated themselves and the people in your life don’t know how to help you.

Sometimes (often) people don’t even believe me. Sometimes they see it as a chance to write me off as beyond repair. Sometimes my mental illnesses go from being a concern to being a joke. Sometimes I’m dehumanized and pathologized to the point where I’m seen exclusively as a case study. In my life, I’m consistently reminded of how people have no idea how to treat other people with co-occurring diagnoses, especially as they increase in number.

If we can’t create support for folks like me, where else are they going to go? When else can they be themselves?

Psychiatric labels can be important to us, scary to us, even empowering to us – for me, it’s been all three. But one thing they’ll never be is the sole determiner of our worth. We are whole people with value, no matter how few or how many diagnoses we have.

That’s the truth. And it’s a truth we need to make sure everyone – especially mentally ill folks – know.