You know, I never thought it would be this way. Maybe because I never really thought. No one taught me what’s required to be a successful grownup, what it’s like to lose a love, to lose your life.
I’m sitting on the living room floor. Just switched from “Code Black” episodes to meditation music on the tv. I’m surrounded by the contents of what yesterday was my purse. I emptied it this morning and haven’t been able to figure out what to do with it. The air is on but I’m not hot. There isn’t always a happy ending.
I stayed home today. Got home super late from the ER with a friend. I didn’t have anything pressing today so I slept, kind of. Woke up to a call from another’s doctor. And the headache from the night before. It pressed on unto an 8, still moving. Took 5 prns and a few hours to even somewhat subside. So confused. The muscle weakness made an appearance today. I made a few videos. I did that the other day too. I haven’t been writing. I’ve been so scared. Too scared to pick up the pen or to write truth on the page. Or I want desperately to write but am too physically weak or tired or in too much pain to do it. Or I just can’t post what I need to say because the truth that’s eating the inside of me will eat through the outside of others. So much I want to tell David and I’m so scared. I really wish x was here but she’s not.
I’m so tired. I’m dancing the line between driving and acquiring a new bracelet. It holds no magic power though. I’m sick. I can and do help a lot of people, but I’m still sick. I feel so alone. Disconnect from those around me. Talk of needing to find a sustainable way of living long into the future without the help of others terrifies me. I’m trying to hold out ’til the 20th for my ECT with Dr. M. I got a confirmation call today about an appointment with a new neurologist on Monday that I thought had been cancelled. Honestly, I don’t have it in me to figure out food much less bring together all the facts this lady needs and communicate them in a way that makes sense to humans. (silent tears to piano music)
(long pause, visualization)
Was it meant to be this way? Always on the outside? Maybe one of my parents was successful living disconnected but made me with someone normal and I’m some fucked-up hybrid with all the skills a disconnected person needs to survive but an incredibly deep need, a longing, together to be. A polka-speckled universe. Cornflower blue. (pause)
I need to reschedule a meeting tomorrow so I can leave an appointment early to meet with a friend’s doctor, who is also my doctor occasionally and that of one of my other people, to talk about things she won’t agree with or understand and come up with a solution I don’t support at all. I had it all planned out – appointment in La Mesa, meeting at the cafe next door, picking lavender for the afternoon and then the OCD meeting. Maybe a visit in between. Now the appointment is in Miramar at a facility I need to powwow with but shouldn’t right now, in a place that embraces secrets as I hunt for my truth. My meeting will be replaced with a few hours of arguing. It may be followed by helping a person discharge, which will take the rest of the night. If not, the other person hopefully will be there by then. I take refuge in the quiet moments there. I talk to the staff and take in what my body calls love – acceptance, warmth, care and concern. We help each other and they’re proud of me. (staring)
I know what I need. And I can’t have it. Even if it was there I can’t do it right now. I had two somewhat regular gigs helping people that paid for my doctors. Now they’re gone and I have to solve for x. I have a little bit of savings and my mom is helping me, which is a trigger and a blessing. I surrender. I’m not sure what to do. I was already really struggling. Now the bumpers are down and I’m on my own. My therapist talks about finding a way to be self-sufficient one day. Right. I’ve no idea how.
I need to write but I need to sleep. And I’m craving candy. I get paranoid around this time of night and I keep thinking someone’s here, that someone’s watching me. I have to go. I’ll pray for you if you pray for me. Kinda like buy one get one free. ;) I really wish that I didn’t feel censored and that I could write and keep up with my charts. 6 years of my charts. I WANT to do them. They matter to me. I must sleep.
© Michelle Routhieaux 2017
…I shouldn’t be in this group. I really don’t care. I feel angry. Angry. Angry.
Cog says anger is secondary to hurt or fear. Am I hurt or scared? Yes. Of what? Well… I feel hurt that I feel alone. Hurt that I can’t perceive most of the people around me as anything but idiots – people who can’t possibly understand me. Hurt that it’s my fault, that even after so many years of effort on personal growth, even after becoming a me I love, I don’t know how to teach other people how to “get” me or even understand on a base level what I say. I also feel hurt because people trust me enough to believe I’m okay. (slow, deep breath)
© Michelle Routhieaux 2017
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.
© Michelle Routhieaux 2017
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?”
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.
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.
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
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
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
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
© Michelle Routhieaux 2016
© Michelle Routhieaux 2016
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)
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
© Michelle Routhieaux 2016
(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
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.