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

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

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

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