misdiagnosis, hells to the fuckin yes.

So I went to my appointment at the Early Psychosis Clinic and good news: I don't have schizoaffective disorder, I'm just extremely Borderline.  Well we already knew that.  The really good news is that ditching that diagnosis means ditching the possibility of cognitive impairment, memory loss, and flat out freaky behavior in the future.  Don't worry folks, I will not wake up one morning with the uncontrollable urge to build tinfoil hats.

I have Borderline Psychosis.  Not a walk in the park, and definitely rooted in genetic predisposition, but manageable through meds and CBT therapy.  Cause: being extremely stressed out, or just being in a constant state of distress.  Not a new story.  Writing and research on Borderline Psychosis is...rare, to say the least.  But it falls under the last DSM-IV BPD diagnostic criteria of "transient, stress-related paranoid ideation or severe dissociative symptoms" , or criteria number 9.  I don't think that existed when I was first diagnosed, but it means that I'm not alone. 

So now the trick is finding a job that doesn't trigger the symptoms in such an uncontrollable way.  The job that's being held for me back at work is managing a team of 85 needy cashiers at a high volume, urban, natural foods grocery store.  Way too stressful.  So what's a Borderline Psychotic to do?  Well most likely, take a big pay-cut and change my career completely.  It's my ego versus my mental illness at this point.  How do I come to terms with the fact that I may not be able to do the job I've been doing for 6 years: managing people.  I'm freaking good at it, it pays well, but it makes me crazy.  But again, IT PAYS SO WELL, and we live in an area with a very high cost of living.

I'm sure M and I will make it work, we always do.  Onward and upward.  

Is this for reals?

So I got my confirmation for the Early Psychosis clinic registration office.  I'm planning on bringing M with me so they booked two appointments.  Get this: the total cost for our 15 mile trip across the bay to the magic hospital on the hill is going to cost SEVEN HUNDRED DOLLARS. WTF? Are you f-ing kidding me??  This doctor had better be "wicked smart" as my psychiatrist put it (LOL, the language of Gen Xers ;-)

We have no idea how to pay for it, as we're both living from paycheck to paycheck as it is.  Guess it's time to ask Mom for money, not to say that she doesn't owe me something for being the root of a lot of this crazy (more on THAT topic to come...)

So M and I are frantically looking for things in the house that we can hock on Craigslist, foregoing movies and dinners out, and I just pray that when I lose my insurance next month I'll still be able to afford all of my medication after this sudden expenditure. Oh, and did I mention the regular EKGs I now have to undergo because my heart is beating too slow and is in danger of stopping?  A side effect of some of the medications I'm taking.  Try paying for one of those without insurance.

5 days and counting... I hope that the check I write them will be a good check, or they might send their goons out looking for me.  Oy.

-E

Waitng to Wait, then Waiting Some More

I just need to share this list of everything we are waiting on right now. Let me also point out that every piece of literature you read about psychotic disorder stress the importance of early intervention. Let me also point out that E's is not really getting better. He is getting worse. Slowly, but worse.

• There's this great clinic E's been refereed to where all they do is deal with young adults with early psychosis issues. It sounds great, they assign you a case worker, help you with everything from meds to quality of life stuff. - On the waiting list for a appointment, no idea when we can get in. Oh did I mention the initial appointment is $400?

• There's another drug that E's PsyD wants him to go on. It's a newer and much more effective with less side-affects. When I say less side affects I'm not talking about headaches. I mean less likely to give you permanent facial twitching or disrupt you heart rhythm.  Also it's just works better, which frankly the meds he is on now are not. - It is $450 for a two week supply at the lowest does in the US. Since his Rx plan from a publicly traded multi-million dollar grossing company doesn't cover mental health, we are waiting for it to come from Canada. It was 1-out of stock 2-still fucking expensive 3-han't shipped in almost a months time and we will have to wait for it to clear customs.

•  We are waiting for E's FMLA (Family Medical Leave Act) to run out. He has two moths to either 1-get well enough to return to work (see above two waiting items for that challenge) or 2-Hear back about his Social Security Disability (that he has been waiting on that for two years). Then he can really be living rich with the $900 bucks a month or so SSDI will provide and part time work. We'll have to wait and see what kind of work he can find "in this economy." (Let me also mention that if one more person says the phrase "in this economy" I'm going to scream.)

• Also, waiting for his private disability insurance to tell us how long they will cover him and to what extent if he can/can't return to work. 

Add on top of all this the massive stigma surrounding psychosis, the passive aggressive blame-the-victim mentality in our culture it's a wonder anybody recovers and lives with mental illness. E's a young, educated, white, male in a large and progressive metropolitan area and it's still a fucking challenge.

I don't have a lot of "but-it's-all-part-of-reality-just-love-blah-blah-blah" in me today. And I'm gonna go get my nails done, so bye.

-M

PS Is anybody be sides my BFF reading this? Seriously.

Not Your Usual Gchat

I was hoping my 30's would bring in a new era of stability in my life. In my twenties I lost my father to cancer, lost my mother (tho still living) to alcoholism, had a tumultuous 4 year relationship, I got laid off, and lost my uncle to heart failure, changed sexual-orientation (again) and got a new job where people crying at their desks is a common occurrence. So needless to say I was hoping things would mellow out in my golden 30's. And falling in love with a really wonderful person seemed like a good way to start. I was not anticipating having gchat conversions like this:

Ummmmm ok....umm what?

(Side note, since E knows he's totes crazy it's apparently okay for him to check in on delusions. This isn't like a 'don't try to talk people out of their delusions' situation.)

So here I am, just dealing with my average stressful/sad life stuff and enjoying all the good/fun life stuff...and then this gchat. The surprising part is that the same day that this gchat happens E also probably made a trip to the grocery store and then made me homemade pizza for dinner. Or,yesterday while chilling at a local coffee shop E clued me in that he was seeing his thoughts is the lights....again...ummmm....ok...do we need to call Dr A? (E did, she seems to think it can wait till thursday's appointment) If someone just came up to you in the street and said this you'd probably be a little freaked-out. But there that person is now, dozing on the sofa after watching a DVD and telling me how cute he thinks my new hair cut is.

And that's the hardest part. Both these things are clear and true. My boyfriend is wonderful , my boyfriend is psychotic. We don't live in a world that shows much gray area - one were you can suffer and be afraid at the very same time be hopeful and kind. It's difficult to enjoy the present when the future is so unknown, and the only guarantee you feel like you are getting is that it will continue to be challenging. But then why not assume that it will still be good, too? And right now, that's all I've got - the new meds may not work, the disability may not come though, the mental healthcare system may fail. But it all may not. E may have some weird new notions tomorrow, and then also make those really good chocolate chip cookies...just sayin'.

-M

All of the lights...

I'm not a novice to auditory hallucinations anymore, they're commonplace, but despite that they're difficult to explain.  They're elusive and hard to memorize, making recall very difficult.

But something new has crept up on me.  Visual hallucinations that are part delusion and lead to major paranoia.  Lately I see my thoughts in lights, like a table lamp or a florescent ceiling light.  Each word pours out of the light they radiate.  Which leads me to believe that anyone paying attention can see my thoughts.

So nothing feels secret anymore.  I vacillate between being paranoid about it, to being totally annoyed when someone asks how I am.  Can't they see it?  All of it, floating out of the beams of light?  So in... light... of this I've come to prefer darkness, or dimly lit places, where I don't feel so exposed and vulnerable, making going out, or even having people over a real hassle.

-E

Being Boderline

Most would say I'm in recovery from Borderline Personality Disorder.  I went through 3 rounds of DBT skills group (a year and a half's worth), went to DBT therapy twice a week for two years, and now I attend a weekly DBT process group and therapy once a week.

But sometimes I still feel pretty Borderline. 

Like when I'm upset and I have the urge to do catastrophic damage to all of my personal relationships.  Or when I'm distressed and I want to act impulsively by cutting myself, bruising up my arms and legs, or perhaps picking up a syringe full of whatever i can get my hands on.  But all these options are off the table now, as they would do catastrophic damage to my relationship, and I know that they only provide temporary relief from distress, and much more pain further down the road.  

And now that I'm off work for a while and staying home, the intense fear of being alone and co-occurring sense of boredom and emptiness consumes me.  When M comes home I'm elated, and automatically feel shunned when she wants to retreat for a 20 minute bath.  I feel like I'm being abandoned over and over again, and every time it hurts.  So I have to get better at self-soothing.


What is self-soothing?  Sometimes it's as simple as a cup of tea and some Netflix, sometimes it means swaddling myself in our down comforter and hiding from the world for a little bit.  Then I have to deal with that pesky fear of abandonment. Sometimes I can validate and encourage myself, gripping the pink elephant my therapist gave me to remind me that she's not going anywhere, but sometimes I have to call her for reassurance that I'm not being left, and that these feelings will pass.


The most difficult part is learning to regulate my emotions.  I swing, in a manic frenzy, from anxiety to happiness to depression to anger at the drop of a hat.  So I've had to learn to ride those waves, and bring myself back to the center, to my wise mind, where I can still feel, but deal with those emotions properly.  Without hurting myself.  I'm still working on the unstable sense of self piece.  I often feel like I don't have a sense of myself, or my eating disorder takes over and I become a self that I loathe, that I don't want to be stuck in.  On those days it's a struggle to eat, and a struggle to want to stay alive.


So some days, yes, I'm in recovery, and other days, it's more complicated than that.

But most of the time things are good.  I recognize that there will be ups and downs in my life, but ultimately I've built a life worth living that I enjoy.  I still hate doing the dishes, but M manages to flawlessly pick up where I left off when it comes to holding down the household.  I love M's company, and recognize that this time off of work has given me the gift of spending so much more time with her.  I smile more than I sulk now, and I get the gift of having someone I completely adore in my life to make things so much better for me. I call my therapist less, and very rarely in crisis.  I have a stable home and a steady source of income.  I feel like a productive member of society.  This is where the recovery is, and this is what gets me up in the morning.


-E

My Diagnosis is Way Lamer

When E's psychosis re-surfaced I did what a lot of people who have a loved one with a mental illness probably do: I googled the shit out of it. "Borderline Psychosis" "Haldol" "Schizoeffective Disorder Prognosis" "NAMI support group" "Late Onset Schizophrenia" "High functioning sever mental illness" The obsessive research went along with along crying in the bathroom at work, texting E a few dozen times a day trying not to ask if he was okay but doing it anyway and having some pretty horrific dreams. Most troubling to me was being unable to concentrate on anything longer than about six seconds and the constant adrenaline let down feeling that I had just narrowly avoided a car accident.

I knew I needed help wrapping my mind around everything and someone to vent my fears too. I got a reference for a therapist from a friend. I was super specific: I wanted someone who was comfortable with GLBT people and someone who knew more about psychotic disorders than me. That's when I  started seeing Jennee, who I still see now.

For about 12 visits my insurance payed a small SMALL portion of my payment. As part of my insurance requirements I got an official diagnosis with a real live diagnosis code: Adjustment Disorder. So official. Now I've noticed it's changed to "Adjustment Disorder - Chronic" on my receipts. Hmmm. Well it does sound about right. On the list of the "common stressors" I think that "Unexpected catastrophes" would fit the bill for what kick all this a for-mentioned goggling off.

Now, I don' mean to get all wrapped up in some diagnosis debate - it got my insurance to cover some therapy so whatever - but my main question is, is my response all that abnormal? Are there people out there who would be dealing with this better? Well, maybe. But I'm not them.

-M

Gargoyles

It's a good thing that San Francisco architects weren't into gargoyles, because if they were up there, I'm pretty sure they'd be talking to me.  I look up to see buildings crumbling around me, like I'm in the middle of an earthquake that I just can't feel.  I know the wind is blowing, for reals, I hear real people commenting on it, and the wind chills me to the bone.  What I'm not so sure about are the snapping branches, or twisting tree trunks, the impending doom.  My sanity radar says something's off.

-E

Lock-down

Yesterday my brain put me on lock-down.  It was supposed to be a normal Saturday.  M and I would have coffee at 9:30 at the Peet's downtown.  At 5 to 10 we would part ways- she'd go to her Al-Anon meeting and I'm hop on BART to the city to catch my NA meeting.  Then I'd have lunch with my sponsor, come home, goof around with M, watch her work on projects, and to wrap it up, dinner plans in this city with a friend.

But something went wrong yesterday.  I made it to our coffee date (well, it was a half-hot chocolate date because I gave up coffee for Lent) but as 10 o'clock approached I started to get nervous.  The voices ramped up, the shadows behind me seemed real, and I was pretty sure crevices would open in the earth in front of me and swallow me whole.

So I told M I'd wait at Peet's for her to finish; that I couldn't make it to my meeting today.  I had books, I had my journal, I would be fine.  But I wasn't fine.  2 minutes after M left I freaked the fuck out and went to the car to hide.  For an hour I huddled in the passenger seat hoping nothing horrible would happen.  Which of course, nothing did.  M got back, we ran a couple of errands, and went out to lunch.  I thought maybe I had come out the other side and lived to tell the tale.

When we got home I was exhausted; paranoia, hallucinations, delusions, they all take it out of me like nothing else.  And like a 5 year old I needed M to lay with me in bed until I fell asleep, to keep the Harpies at bay.  When I woke up I was terrified immediately.  Sometimes sleep is the only safe place and I hate the shock of waking up.  I had 3 hours until I needed to make it out of the house for dinner.  So I tried to pull myself together.  I self-soothed like crazy- drank iced tea, watched my gymnast-girl-TV-drama series, and asked for reassurance and hugs at every twist and turn in my brain.  

When dinner time came, I couldn't fathom leaving the house.  Shadows outside were lurking, the Harpies were convincing me that the world was coming to an end and it were best if I stayed inside, and I just WANTED to be comfortable for even a minute.  But along with all of that was the reality that I wouldn't be making it out of the house that night, and on top of it all I had to call my friend and tell her I was too afraid to leave my apartment to come over for dinner.  I felt like a horrible person and like a failure, but I just couldn't get myself outside.

There's no quick and clean way to end this story. M and I made dinner, which I survived without event (and it was delicious) and then I made the simple decision to take my socks into the bedroom to put them with the laundry.  And it all fell apart again.  Fear flooded in and I threw myself onto the bed in the darkness to hide (it's better when it's dark inside, because it makes it that much lighter outside where things tend to lurk).  I didn't want to ruin a perfectly nice evening, and M wanted to take a bath, so the question was posed "what was I going to do?"  What seemed like a perfectly logical answer was to crawl under the covers on the bedroom.  I figured that if M was going to be somewhere comfortable and soothing then that's what I should be doing too.  But she coaxed me out of the bedroom, and there was where I ended up, swaddled in a blanket and plopped in front of the computer with my girl-gymnast-drama and a blog post to write.

-E

Is This Gonna Totally Bum-Out Girls' Night?

Friday night I have plans to go hot tubing with two of my favorite girl friends. Sort of a 'girls' night' to catch up and relax and celebrate a birthday. I've know these two girls...(hmmm do they need fake names?) we'll call them Leah and Tessa...I've known Leah and Tessa for many years. They know and like E, and they know how sweet I am on him. I'm thinking I'll use this rare face to face time to tell them about E's mental illness. Just FYI I have E's permission and support on this - he's fine with me sharing it with my close friends.

E and I have been getting ready to start telling some of our friends what's going on especially since he's going to be taking leave from work. The question dodging I've been doing and feelings of in-authenticiy are really getting to me. And frankly, I need some extra hugs, so I'm wanting to get people in the know. Also, I don't want this to be a secret anymore. It's what's happening.

I'm really wanting to share this with my friends, and in my heart I know they'll be there for me. But I'm not quite sure how to really break this news...do I start with something short like: "so Eli has schizoaffective disorder" and then open the floor to questions? Tessa was a psych major so I think she'll know what that means, but Leah may need some explanation and "it's like schizophrenia but also with bi-polar disorder" really sounds like a fucking bummer. I don't want to freak them out, but at the same time, this is serious stuff. Not to mention the high probability that I may start to cry and make everything extra awkward by talking too much. The worst part is I know they'll be looking to me for a lead on how to approach things - if I'm too jokey and sarcastic (which I can do as a defense mechanism) it wont seem like genuine appeal for support that it is. If I totally melt down...well I just don't want to totally melt down.

For now I just think I need to convey three things to my girlfriends:

1 - I really need there support and understanding

2 - E is for sure sick - he will probably be ok, but things are going to be hard sometimes. And we may have a different definition of "ok" depending on the day.

3 - Ask any questions and don't feel awkward about it. I'd rather talk about stuff than have people make assumptions and it's tough to have to volunteer information all the time.

4 - Please don't let this totally bum out girls' night - one great way to support me is to just let me pretend for a bit like this isn't that huge of a deal, even if it is. And I really want to hear about this guy that Tessa is dating, he seem like a good one!

Next up, telling my sister and brother-in-law...that is a whole other posting.

-M

Are you okay?

I'm tired of being asked if I'm okay, because you know what?  The answer is usually "no, I'm not fucking okay", but that's not an answer anyone who asks the question is prepared to deal with.   


Sometimes M asks the question; best case scenario, as she will accept the answer of no, I'm not ok.  But any details of what, where, who, how or why tend to bring on overwhelm and she reminds me that she's not my therapist.


Sometimes my mother asks the question; worst case scenario, because I am forced into a lie about how I'm totally fine, in order to maintain some semblance of normalcy in the household, and to keep her from smothering me by trying to "fix" it.


And then there are all the times in between.  Like at work, when they ask me if I'm ok, they don't really have time for the answer and all they really want to know is "are you going to have a seizure and pass out causing a smack to the head on the concrete floor".  They don't know about all the crazy, and I can't imagine if they did.  There are friends who pose the question, and I just can't break it to them that things are fucking tough right now and no, I'm not okay, and yes, it's true, I'm not asking for help.


But no one seems to ask when I am okay, which makes me feel like I'm transparent, like I shouldn't play poker because my face is a tell every time.


-E

The Lurker

Some days I'm pretty sure that someone's following me.  Not the Harpies, they're always following me, but someone more ominous, more threatening.  I'll admit, I look over my shoulder, a lot, just to make sure, but even when I look 

I'm not convinced that I don't see something lurking. 

I don't usually backtrack, or take 3 unnecessary buses.  Usually.  But sometimes it's hard not to act on the delusions.  It's difficult to convince myself that these things aren't real; i.e. I've never actually found someone following me, I've never been caught or hurt by said follower, but it still feels real. 

These days I try to work under the pressure, and it's ridiculous.  I stand at the Customer Service Booth looking back every 5 seconds, seeing shadows fluttering just out of view.  If people ask I tell them I'm keeping an eye on my cashiers, in lieu of having eyes in the back of my head.  Being delusional would be a lot better if I really did have eyes in the back of my head...

-E

Sewer Harpies

There are about five voices in my head, but if you ask me, they’re not in my head at all.  They’re as real as you or me, they flank me on all sides, and they are LOUD.  And believe it or not, they are all women.  I call them the sewer harpies, sometimes the peanut gallery, but usually just the Harpies.  One speaks in a low hiss, one is ghetto fabulous, one as sweet as Cool Whip, one is loud and angry, and the last sounds like me at 15.

I try not to name them, though sometimes I am dying to, to give them a life and validate how real they are.  They want names, but they are not nice about asking.  The Harpies are not nice about anything.  I don’t get inspirational messages, or warnings that the aliens are coming, but words that are more believable than either of those options.

The Harpies tell me that I’m worthless, that I should end it all, that someone will die if I don’t eat my bagel in exactly 45 bites.  It’s a lot of pressure when I listen, and it’s hard not to.

I manage to survive the Harpies, work around them; tell them to mind their own business.  Headphones help, telling them to go away doesn’t.  Ignoring them is a wise idea, talking back to them, unfortunately, is not.

Lately the meds haven’t been helping, and I live with raging Harpies every day.  My compulsions are few, despite the encouragement, but my confidence is low.

-E

Being The Girlfriend

I'm the girlfriend. I'm the one in that past post who sounds so patient, loving, supportive and sane. And I am those things. I'm also frightened, confused, and lonely.

When I first met E I was a pretty regular 29 year old. I had a job that I liked some-days and hated some-days. I was mildly neurotic, recovering co-dependant, and working on those things with Al-Anon and other self-help tools. I went out to bars with friends, played with my niece, cleaned my apartment, read young adult novels about wizards. I'm still all of those things...well now I'm 30. The only difference is now, I love someone with a pretty severe mental illness/es. And as I'm finding - that's a pretty big difference.

Let me clarify this 'love' part - for myself and for you. I love E for E. He's kind, thoughtful, super smart, and agrees with me that seafood is gross and cats are awesome. I fell in love with him hard, fast, and it was one of the easiest things I've ever done. I love him when he's whispering sweet nothings into my ear and doing my laundry. And I love him when I get the feeling he may be entertaining some odd notions about the messages in the flashing lights at the check-out line. I don't love him because he is sick and I don't love him despite being sick. I love him. And he is sick.

Loving my boyfriend is easy. Loving someone with mental illness is not. The maze of information, support, and stigma I find myself navigating in is a bit overwhelming. What' helpful? What's doing too much? What's doing not enough? What can I expect? What can I accept? What boundaries do I need?  When is there a crisis? When are things okay? I have a different answer to those questions everyday and I think that might be how it goes for a while. One thing is really clear to me - we both need support - and it IS out there. I've gotten myself some already. I have a great therapist that I love, and although it is a different issue I find the wisdom of Al-Anon is a great comfort. But I crave a community that I don't have to explain things to, or worry about freaking out. Mostly, I want to be that girlfriend in E's post more, and the one who is crying at the kitchen table less - and I need support to do that.

-M

Totes Normal

When people ask how I am, that’s what I want to say: totes normal.  It’s not a reply that answers the question.  What they want to know is “how is your day going?” or “is anything notable happening in your life right now?”  So this reply is obviously insufficient, but it’s what I long to say.  The truth is, the answer to that question is too complicated even for me to explain.

Here’s the problem; I’m mentally ill.  Not a little depressed or slightly anxious, but totes cray-cray.  I’m not even suffering from dual diagnosis, but some sort of full-on multi diagnosis that is as dynamic as the freaking ecosystem.  The list?  Borderline Personality Disorder, Panic Disorder, Chronic Depression, Eating Disorder- Not Otherwise Specified, Epilepsy, Opiate Dependence, and Schizoaffective Disorder. 

Yes, totally crazy, and utterly mentally ill.  But living with it, and hopelessly in love with a girl that manages to live through it with me.

Some people know the details of my life, some don’t.  Let me take a breath to speak to what happened to me two years ago, or maybe more accurately what I did to myself in the wake of totally losing my mind.  I was working as the manager of a grocery store, finishing up a dual-degree masters program, and managing a nine-year (and somewhat imperfect) marriage with grace and dignity.  Then the Epilepsy hit, I cracked under all the pressure, and totally lost my mind.  I stopped eating and lost 75 pounds in three months, fell back into the depths of heroin addiction that I had left behind with my teenage years, and anxiety and depression consumed me.  The Borderline in me resurfaced, and then the psychotic break came.  Within six months I lost my job, my savings, my wife, my housing, and all semblance or normalcy that I had built in the nine years since I left home at 18.  I was a disabled wreck.

To my credit, I refused to give up.  Over the next year I spent weeks at a time in the hospital, freaked out a therapist or two, and finally found my saving grace: Dialectical Behavioral Therapy.  If you don’t know what it is, look it up.  It’s life changing, and in most cases, life saving.  I pulled myself together, whilst living on disability in a tiny but clean SRO, and I started to date again.

Which is when I met her, the girl that I fell in love with, who inspires me and encourages me, who didn’t know what she was getting in to, but has stuck through it like a champ.  She reminds me to take my meds, helps me with my therapy homework, and is always available for reality testing and talking down the voices chattering behind me.  And we even fit in the normal stuff like dinner with friends and trips to the grocery store.


But then we started to feel isolated, like we were hiding the truth of our mostly crazy but pretty normal life.  So we started this blog.

-E