Sunday (vent)

4/30/2017     12:32pm

I can’t do this.

I’ve been home about a half hour. I took an Uber from 1925 Elm, wherever that is. It has not been a good day.

I actually woke up when my alarm went off at 8:30am and started researching how Facebook Live works so I could share Women’s Day at the church with my friends. K- had texted letting me know T- was speaking because he knows my friend really likes her. I didn’t get an event up yesterday due to the NAMI Walk but I put it on my page and I wanted to be able to share it, especially with that friend. I told a few people at the NAMI Walk too.

My body hurt quite a bit today from missing my 5pm meds yesterday during a nap, but I got up and took a shower. I had laid out my clothes – a really cute black and white skirt and black top. I heard my mom getting dressed, which baffled me since she neither likes that church, or Women’s Day, OR ever wants to go there. She said she just hadn’t been feeling well. Bullshit. She’s spooked from almost dying and wants to go to church so somehow “going with” me, which means driving me, which means us being late on a day I’m specifically trying to capture everything, seems perfectly sane. Right. But my balance is off today and I’m running into walls and dropping everything and I still fucking hate everyone, carried over from yesterday. I forgot my purse and she was determined for me to eat yogurt instead of writing or changing the last few settings on my phone or figuring out how to tweak a camera accessory to work with my phone.

She was pissed that I’m cranky, for which there are more than a few reasons, some of which are physical. When we got to the church we were the ninth car, including -’s. “Where are the humans?” I said. We were eight minutes late so I thought maybe for once they started on time. The doors were closed. No one opened them. I let my mom in. When the few humans who were there noticed my mom was there they were all excited and happy to see her and saying how they’d been praying.

(make a smoothie, move to couch, turn on piano music)

Everyone was happy to see my mom. I’m glad they paid attention to her. I sat down. The service hadn’t started yet, which I find annoying. – came down from going over a song to hug my mom. He hugged me too. He looked old today and I said so. He said it looked like I got the notification. He gestured towards my outfit. I told him I had no idea what he was talking about. The other ladies for Women’s Day were in black & white. I’m assuming that’s what he meant but I still have no idea. I said I wish I had gotten the notice/notification for this day sooner so I could send it out to my people. He said no, that he didn’t want any more notices or people, he just wanted Michelle. I stared/glared at him confusedly. What the fuck was he talking about? I told him you can’t have Michelle without notices or reminders, and I bring people. Again with the no more notices, just Michelle. He said he was changing things, blah, blah, blah. I looked at him again and said, “Don’t make me hit you today. I am not in the mood.” I was not joking and there was no way what I said would have been taken that way. I don’t even remember the last thing he said to me. I just know it was in the same vein. I grabbed my purse, stood up, hands raised in surrender and said, “I can’t do this. I can’t. I can’t be here. I’m out.” And I stumbled my way down the aisle and out of the church. I guess I’ve stormed out of enough events in my life that no one bothers to follow, or text, or call. It’s not in the best of neighborhoods. I don’t like being followed, but I’m not sure what meaning to attach to being ignored.

I don’t know what – was referring to, or what he meant. I certainly don’t understand. It was his notice I was talking about. HE sent it to me. He calls me his “new evangelist.” While I don’t like that word, it’s a type of outreach. What is Michelle without networking, without outreach? Really? Go ahead and define me without anything related to connecting people to other people or resources, without some component of organization or information, without sharing, or teaching. I dare ya. Spreading the Good News, or sharing the Gospel, is NETWORKING. I can’t not be me. And I don’t intend to.

I was aware as I left that I didn’t have my journal but I didn’t dare turn back to get it. I walked. I had my purse and my phone. I walked up 49th to Federal, down to Euclid and called an Uber at Elm. I knew it wasn’t safe for me to be walking there. I don’t fit in. I didn’t care. If someone had tried to mug me I would have just handed them my purse. It’s not worth a fight. I’m dressed too nicely on a Sunday morning to be a prostitute and I’m white so that rules some things out. On Federal a police car passed me, turned around and drove past me again. He did this several times. I was paying attention to my surroundings as I walked, but also to my body. Yesterday and today my face has been tense and twitchy, but I noticed something new today. As I walked, my hands were open static, palms forward. They just stayed there. My fingers weren’t moving. My soul was frozen. I give up. I stopped to smell red and yellow roses, said hello to the homeless people as I passed on the street. I smelled the two types of jasmine, picked one. I stopped to stand under the shade of a few trees. I just wanted to write but I had no paper. I needed a safe place to stop.

I wish I had wanted to die. Precarious situation. I’m used to feeling awful and wanting to die. It brings relief and I’m okay. But I didn’t want to die today. I just couldn’t stop the feeling. It’s all over. Nowhere to go from here. Dr. M said we can reset the inside of my brain but not my life. Sometimes I think it’s better to feel worse than good. At least in death there is hope. In this, it’s just endless bullshit followed up by a helping of confusion and then some more shit on the side. Why try to feel or get better if being better hurts worse?

There were no words in the UberPool. Driver barely spoke English. Before he arrived I looked down at my phone and my mom had sent me a text message. It read, “Don’t let the Devil keep you from being in church this am. Come back in, please.” I replied, “You don’t know what you’re talking about. I’ll see you later.” I was so hurt. How dare she? Sure. I use everything I have in me to get to a service I’m doing something special for, am extremely triggered and offended by something someone important says to me, leave so I don’t scream or hit someone or say something their delicate ears can’t handle and somehow it’s the DEVIL keeping me out of the church? Riiiiiiiiight. I’m in bed with Satan and my goal is to fuck up the church and cause a scene wherever I go just to get in the way. I’m sorry I never realized the beauty of this plan. I suppose all the people I bring and media I share are Satan-derived too. I earn Hell-points for everyone I bring to church or convert and extra for each time I get upset and leave. (close and roll my eyes) Why even try?

M’s coming over in a half hour to work on folders. I don’t care to see anyone. I don’t want to work. I hate the new labels. I need to return the proof for the table runner. I need a nap.I think I’m getting sick too and my doctor isn’t returning my message. (sigh) Mom called to say she’s bringing food home. I JUST WANT TO WRITE AND SLEEP.

God, please help me.
Happy Sunday.

© Michelle Routhieaux 2017

FUCK YES

1/27/17     12:09pm

I am SOOO ANGRY. And I slept 22.5 hours last night so I have plenty of energy to direct that way. I managed at least to scream “FUCK YOU!” after hanging up the phone.

I called the Coordinated Care Initiative line for the State of California. They are supposed to handle the conversion to and exemption of dual eligibles (those of us eligible for both Medicare and MediCal) from the new managed care requirements in this lovely state. The only easy way out of this requirement is to have HIV/AIDS or be an American Indian. I’m tempted.

What am I talking about?

Medicare is the health insurance offered to most seniors and people on disability (after 2 years). It’s hard to find a specialist that takes it but there are many useful hospitals that take it for medical and psych. There is a 190 day inpatient limit for psych days at a free-standing hospital. (When I’m better I shall be tackling this.)

MediCal is California’s version of Medicaid (federal health program for poor people.) It is near impossible to find a skilled clinician, if they give you a doctor at all instead of an intern, on MediCal. It is a good net if you have non-specific or only emergency medical needs but if you have chronic medical conditions and/or psych needs and have only MediCal, you’re screwed. In some clinics it’s better to be completely uninsured and pay a sliding-scale amount and see a good doctor. Having MediCal (and Medicare for that matter) also usually exempt you from prescription discount programs offered by manufacturers, even though formularies are scant.

If you have both Medicare and MediCal, MediCal won’t pay for any fee that is above what Medicare determines they should be paying your clinician – no matter how far below industry standard or just human dignitiy would allow. Yet our great state of CA decided that being covered fully by both insurances was just too much. In Jan 2014 they started a “demonstration period” of what’s called the “Coordinated Care Initiative” and started forcing people into either CalMediConnect (a program that pushes you into an HMO that rolls your Medicare and MediCal into one, SIGNIFICANTLY limiting your benefits) or whatever Medicare you already have plus being forced into a MediCal Managed Care Plan HMO. I opted out of this “demonstration” in the very complicated and hard to find way they barely provided as I watched the change mess up countless lives.

Then a few weeks ago I got a similar packet in the mail. I did some research online finding that the demonstration period ended Jan 2017 but no info on what the outcome was, whether it saved money, links to the actions taken by our government to expand or make it permanent. Nothing. Someone from CCI called to enroll me in a plan Wednesday since I hadn’t mailed in the form. I explained that I had no intention of joining an HMO because it would complicate and jeopardize my care and she told me where to find an exemption form. But the form says it’s only for people who don’t have another insurance. So I called back today.

I won’t lie. I’d be happy if this man’s head exploded and a MediCal doctor was left to piece it back together. He tried to convince me I wasn’t being forced into an HMO. FALSE. Then he told me I’d qualify for a non-medical exemption but failed to mention the American Indian or HIV/AIDS part right away. I asked about the demonstration period and where I could find information. “We’re just the enrollment center. That’s the state… That’s not my department. That’s not my issue,” he said. He kept coming back to trying to tell me my doctors wouldn’t be affected by joining a Managed Care Plan. Then he went and said it. “Well, if the only reason your doctor won’t see you is because of the extra time it takes to do MediCal paperwork, is that really a doctor you want to be seeing?”

YES!!!

How much more of a fucking idiot could he be?!! Just how they want them at the CCI office I bet. I told him, “YES!” Those are the doctors who have time to hear what’s going on, who listen to my situation, who have experience and choose to actually get paid for it instead of working for free or just supervising 10 interns at a time as they run around the office “practicing” medicine. FUCK YES.

Aside from just being rich, Medi-Medi with fee-for-service MediCal was the best insurance one could get. MediCal pays my monthly Medicare premium, automatically qualifies me for Part D Extra Help (making my generic drugs about $1 and my brand name drugs about $3), and picks up the copay at any doctor I see or prevents them from charging me one. I’m not looking forward to this new world and what will be denied or changed. At least I can blame screaming “FUCK YOU” at them on being crazy.

TIP:
I run into doctors who take Medicare but not MediCal and if you tell them you have both they say they can’t see you as a patient because they don’t take MediCal and it’s considered fraud to charge me my Medicare 20% or anything else.
WRONG
Usually I just call back and don’t tell them I have MediCal. Then they take me but I guess it’s still fraud.
I learned this from HICAP when I called a few days ago: It’s not fraud if they give me a statement in writing that they don’t accept or bill MediCal and I agree to this in advance of treatment. Sweet! I’m on the search for a preformatted statement like this and will post it when I find it. Then I can blanket the city and my group with this new information. I even had a girl turned down by a Sharp Urgent Care the other day because they told her the same thing. I do have ins at Sharp…

Don’t fuck with a fucker. I’ll take you out. ;)

© Michelle Routhieaux 2017

God Breaths

1/24/2017

yoga-therapy-art_0112-1

There was a great image in this session of my mind filling my body as I breathe in and my body emptying it as I breathe out, purifying. Soleil called these Earth breaths. I think of them more as God breaths. The letters and lines represent disjointed thoughts.

© Michelle Routhieaux 2017

Hope in Electricity

1/23/2017     11:43pm

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I feel so good. My body is really sore and I can’t drive but I feel light. Colors are crisp and clear. They may only last a moment but I have ideas. I smile warmly for no reason. I breathe deeply without having to think.

Today I had ECT (my 1st since April). A change in anesthetic caused some problems but I am so much better. I am blessed with an amazing doctor who genuinely cares about me and a dream support team. Friends are helping with rides. I am released to rest and sleep (both from my depression & ECT).

It’s been almost a year since I was doing somewhat okay. My current therapist says he doesn’t recall ever seeing me not in crisis. Late summer I started to get worse. My repeated calls for help fell on ears that considered them my norm. I prepped to go inpatient in Sept/Oct but thanks to an amazing arsenal of coping skills and extra sessions of therapy I was able to hold off. I asked for ECT. My doc wanted DBT-IOP. I got pushed into a different program instead due to my people being in DBT, despite my multiple warnings that it was not a good idea. It was, as anticipated, a catastrophe that ended with an event appropriately described as trauma that I’ve yet to be able to process. In 1 day I went from 25+ hours of treatment/therapy per week to 2-3 hours. Not good.

Lately my suicidal ideation has been through the roof. I’m fighting for my life. I’ve also been impulsive, angry, self-harming, dark, unable to access empathy, scared, feeling alone and hopeless. Last week I called my therapist at midnight. I packed for the hospital. I cried.

They laid hands on and prayed for me at church on Sunday. It was unexpected yet utterly calming. I was surprised last week when my pdoc offered ECT. In one moment she validated and made my ongoing normalized experience true. I was confused. Even this morning I was panicked as they put me under. But Dr. M had my hand and I could feel God and see the outlines of my angel and D- and some unknown to my left. I am exhausted and sore but I am okay.

God, thank you for blessing me with family & friends and kick ass doctors. Please continue with my healing and keep using me for Your will.

My next treatment is Thursday. I wonder how long they will last – not the set but how long between treatments before the effect begins to wear off. I’m itching to do weekly. I can drive then. ;)

I enjoy resting and sleeping now. And rain

M

Update 1/31/17  1:46am:

I had a treatment on Thursday and another today. The weekend was really bad but I feel better now. I’m getting some rest and reminding myself to do one thing at a time, be “gentle to self,” as we say in group. I’m proud of me and grateful for my treatment team, my friends and ECT. There is hope in electricity.

© Michelle Routhieaux 2017

Windows of Opportunity

12/5/2016     9:38pm

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I’m sitting in the VA parking lot. The potluck was tonight and I pulled it off well, got a special award from Libby. I cleaned up and socialized, kind of. I feel weak and dizzy and faint, like before I passed out yesterday. I walked the stairs anyway. I want that star.

(rest on my fist the space between my eyes)
Mom didn’t come.

I missed my opportunity. I fucked up. This is my fault. I need and wanted ECT. In the time I could have done it and recovered I tried something else to appease my doctor, which went horribly wrong. Now I’m in a med change. She’ll want to know if it’s working tomorrow.

Is my new med helping? Is it better or worse? I’m not sure how to answer that. Before I was severely depressed and non-functional. I wanted and needed ECT and had time to do it but needed help with logistics. Now I don’t know what I am. My best guess would be rapid cycling mixed episode with mild psychotic features and marked memory impairment. I go back and forth from bitter to rage to desperation to confusion – lots of confusion – and back. The period I’m not supposed to have now comes for about 3 days every week and a half. I’m bingeing a lot, making myself ill, impulsively maxing out my credit cards. I shut down completely in private and in public at inopportune times. I’m isolating from everyone, including D-. Fighting with Mom every day. Is that better or worse?

I missed the opportunity. They don’t come often. Today I went back to work for F-. I’m expected at group and outreach events and appointments. Because my moments are split I don’t get to pick ECT anymore. I don’t get to do what I know works for me ‘cuz I’m feeling now. Fuck.

(curled over, feel my heart beat on my skin)

I’m cold.
What do I do now?

Just keep working.

I didn’t matter enough to fix. :(
Not my turn.

3 – When Daddy hides the roller skates, run run away.
No like Daddy clip his fingernails.
Ice live in penguins, Mommy.

I get to see J- on Thursday. I don’t know how I’m going to pay for it but I want my life back. I NEED me back.

What do I want/need help with?

  • coaching through PRYT training – fundraising, planning, accommodations, follow-through, step by step
  • going through my stuff
  • fitting all I own into my room
  • conquering the garage
  • dancing again consistently
  • financial planning
  • losing weight
  • standardize & wrap up group business
  • have friends again
  • sing again
  • be in a musical again
  • scheduling – me + responsibilities
  • being around my mom with compassion

(stare, hear a GameBoy game song)

3 – I want to go humbly. I mean home. You bozo.

(VA police sweep)

The difference between now and then is that in the darkness I felt hope.

© Michelle Routhieaux 2016

Quiet is Purple

11/29/2016

meter-11

(sit quietly near to be where I’m not)

What seems like a void isn’t.
And what’s heard as silence isn’t.
The lack of air that fills my soul, it makes no sound.
No one hears the silent screaming.

Tea. Broadway. Fading lies.
No Giving Tuesday for me.
No Denver, or Ohio, or Scotty.

Quiet is purple.
Quiet is me.

© Michelle Routhieaux 2016

Life Update – Thoughts from the Couch

11-20-16     11:46pm

I feel sad. (pause) I’m sitting on the couch, tv off. Mom’s asleep. The clock is ticking relentlessly, rain falling on the metal overhang outside. I watch the candle flicker. I don’t know what’s happening.

Today I went to church and lunch with my mom and her friend. I fell asleep after, picked up a migraine and forgot what I wanted to work on. I’m not doing well. I’ve been quite depressed for some time. I wanted to rejoin the ranks of ECT but tried an intensive outpatient program instead. That ended terribly. Now I’m trying to figure out what to do, only I don’t have the mind to do it. Dissociation has taken on a life of its own. I’m losing time. I can’t follow what’s happening. I’m sending freaked out emails to my therapist that later I have no or little recollection of. I started a new med that I’m pretty sure is either making my symptoms worse or holding off the small sanity breaks I usually get. I’m usually a shark when it comes to managing money and two months in a row now I’ve forgotten to pay bills. I can’t keep up with my work, often forget I’m even supposed to be doing it. I go to my group and do the bare bones. I’ve been somewhat honest about the fact that I’m struggling but I don’t share in group or when I’m willing there isn’t time. I avoid it altogether most times since the feedback I get is often silence or replies that are only vaguely relevant. My friends express concern and ask if there’s anything they can do to help. I know if I told them something they would do it, but I don’t know what that is. I’ve pulled away from almost everyone. I don’t know what to do. I go in and out of wanting to kill myself. It’s not a likely scenario considering I don’t actually want to be dead and I can’t undie if I don’t like it. Soleil also pointed out recently that I’m always moving and there’s no movement in death. That would certainly be a problem.

I think it was last month that I had packed a bag and left it in the car should I want or need to go inpatient. I’ve since unpacked it. I did tell my mom after a bit and I told her I was considering more ECT or an IOP. She didn’t really seem surprised or upset, or anything for that matter. When I went into IOP all that mattered to her was that I got my work done, which I didn’t. Ending the IOP was traumatic and I was upset for days. I couldn’t tell her what was happening and when I was finally going to she said something so offensive about a few of my friends that I wouldn’t. We got in a huge unrelated screaming fight a few nights ago. Today she said I wasn’t making sense. I’ll give her that. I tried very hard this evening to talk to her. I told her I’m losing time. I spent all my effort trying to explain what that means, what it’s like for me. (stare off into space) She picked up the remote and said, “What do you want to watch?” There was no response or discussion.

My therapist is doing his damndest, which I have to give him credit for. We’re in rough waters and even I don’t believe in me. For some reason he does. I feel horribly guilty for telling him the truth about what’s happening to me. I don’t want to be the girl who’s always in crisis. I mentioned something recently about working with and educating the police and he straight up laughed, said he would pay to see that, take the whole day off work. I don’t blame him. He’s never seen the side of me that can do that, just the one that’s freaking out.

I don’t know what there is to be scared of. I am so blessed. I live in a safe home with my mom who loves me. I have the most incredible team of providers I couldn’t even dream up and a steady source of income. On top of that, I have a God who loves and protects me no matter what I do and a group that’s got my back. I can let go but I’m afraid to lose control. I’m afraid of losing who I am.
Did who I am even matter?
Not really.
There you go.
I still feel confused and scared. God keeps telling me, “Go.” WHERE?!!
You’ll know.
Shut up.

I have to go to bed now. My goal is 12am and it’s 12:12am now. Thanks for listening to me vent. I hope you’re doing okay.

Michelle

Is no one else upset?

9/30/16  1:57pm

cajon_custom-7164ab9a3a6a90cc9d89f557696d1cfcdfac2d09-s400-c85I feel awful, and not just because I feel awful.

You may have heard there was another cop shooting this week where the cops killed an unarmed black man. Seems to be a fad these days. I hear them on the radio and they are upsetting but they are far from me, beyond my ability to affect or be a part of. But this one was 2 miles from my house at a taco shop between the vet I go to and the place I buy frozen yogurt. AND this person wasn’t just black, he was crazy.

(*For those of you who take offense to the word “crazy” or believe it promotes stigma, I don’t care. I am proud to be crazy myself and I use the word openly. The term “mentally ill” makes me MUCH more uncomfortable.)

That said, this man was crazy. His sister called for help, made it clear that her brother was not okay. After almost an hour a non-PERT team was sent to the scene and killed him. You can read the details in this article. The officer with extensive psych training responded appropriately by tazing the man. The other one shot the guy. He’s dead.

Immediately the Black Lives Matter movement and NAACP stepped in. Churches, vigils, protests, marches. Only last night did the events become violent. More is planned for tonight and something big on Saturday, though I don’t know what they are or how to find out the details.

I WANT TO BE INVOLVED. My mom says to stay away from all of that. My contact with the police replied somewhat cryptically to my response. My basic interpretation is, “Stay away from that, Michelle.” There are complaints about violence and I hear people look down on those acting out, but I don’t blame them. What else is there to do? What channel is there for expressing extreme anger and distress? for requesting help and change from a virtually impenetrable source? Of course there will be violence eventually. And it’s the only thing that proves effective right now. It makes the news, gets the word out, releases emotion and sometimes causes officials to actually do something they want or need done, like release information.

(watch live feed of press conference and release of video of shooting, approx 40 mins)

Wow. I’m really glad I live in a city that’s so coordinated and connected and prepared (somewhat) for things like this. The distress of the police chief came through the screen. He did a great job. I’m grateful someone asked about PERT and why PERT did not respond… (watch more, read more)

It’s upsetting to me that cops kill people. I try to avoid them at all costs when I’m not at a PERT Academy or similar event. They scare me. They kill people like me for being me. I’m upset that there is way more focus on the man being black than being in a mental health crisis. I’m upset that there’s no rallying behind the family by a national organization like NAMI or DBSA. I’m upset that only today, 3 days after the shooting, did anything related to the shooting show up on my support group FB group. I don’t watch the news but this is unavoidable. Someone heard SOMETHING. Is no one else upset? Does no one else also believe that crazy lives matter too? This event has implications for consumers, family & friends, and the community at large but I’ve receive no calls. I’ve gotten no emails from organizations locally stepping out saying what happened was if not wrong at least really fucked up and didn’t have to end that way. No condolence emails. No vigil notifications. I can’t even seem to find information on the civil rights-related events planned or happening. It’s like it doesn’t exist.

Meanwhile, I sit here wondering what to do. I want to be a part of change. I want to be able to take some action, to make a difference. That doesn’t happen on Facebook or lying on the floor. I don’t want to be one of the people who just stands by, who places their own safety above the greater good. I get mad at my mom for avoiding meaningful rallies and events because of danger. I don’t understand how she lived through the 60s and 70s and never joined a protest. It makes me angry. I walk toward the fire for things I believe in. I’m not afraid to die. But in this case I don’t know how. I don’t want to get injured at a protest. I don’t even know where to find them. I don’t want to miss out. I don’t want to be aloof or to put myself first. I want IN. How do I get there?

All the time I spend networking and talking to people, forming alliances and gathering info is my greatest addition to change, aside from crisis intervention. Here somehow that doesn’t feel adequate. It’s not enough. And no complaint form or grievance or blog post will fix that. I feel really sad.

I asked my PERT person these rhetorical questions:
  • What am I supposed to tell my people?
  • What do I tell my consumers to try and remember to do or not do while in crisis to not get shot? (aside from the ERP list)
  • What do I tell them when they freak out even more when someone does call because now they’re terrified of being shot too just for being in crisis?
  • What do I tell my family & friends people when they want to know if it’s still safe to call 911 and hope for PERT?
  • What do I tell them to make this okay?
  • What do I tell all the sisters and relatives who now don’t want to ask for help because they don’t want to kill their loved one?

For some reason my people don’t seem upset. I’m not getting FB posts or phone calls or texts. I’m not even getting concern from people about the 2 deaths at a popular independent living this week – murder/suicide. Is everyone asleep?

I don’t know. I just want what I do to matter regarding this. I’m not a sit on the sidelines type of person. I’m crazy and I want change. I want to matter. I want to feel safe in my home and my city. I want to be me.

http://www.democracynow.org/2016/9/29/protests_continue_in_san_diego_after

http://www.cnn.com/2016/09/30/us/california-police-shooting-video/

© Michelle Routhieaux 2016