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