© 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
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
Non-linear. My thought is non-linear today. I was willful and skipped my Geodon. I also didn’t eat. Now I have a big headache. I can move today. My muscles don’t hurt. I can breathe easier. Literally. (move to stairs)
I thought I could wait for my mom here with some ice on my face. Instead my mom wants me to play with the girls. No.
I sound like a meth-addict today. Or crack. My thoughts jump on lilypads scattered. They come out fast in somewhat coherent globs. There are pauses where words should be. My muscles are twitchy, reactive. The ones on my face have been vibrating all day. I have periods of nerve pain, intense. I question me driving, stayed home extra hours today when I wasn’t okay. I feel small and scared. I want to go home. My face BURNS.
Tomorrow I will start half-dose in the morning and full dose at night. Dr. H is not mad at me, thankfully. I just want to feel better. Better. Me. Non-linear. I want my think back, please. With less pain. Maybe migraine today. I’m losing time. It floats away. The sound attacks my head with spears. Don’t let me ever have kids. Really.
Non-linear. My head hurts. Please.
I did some projects today. No. I want to go home please. Non-linear. Me.
© Michelle Routhieaux 2015
I want to be well.
I want to be well.
I just left physical therapy. I had tachycardia during some of the exercises. 10 step-downs shouldn’t send my heart rate to 140, making me shaky, dizzy & weak. I told the guy working with me. He asked if I have a heart condition. Yes, but it’s not properly worked up or treated.
I want to be well. I want to dance. Hell, I want to be able to walk up stairs to DBT without a problem. I’m tired of being sick. I take so many pills and am so limited. People look from the outside and say I’m so functional and assume I’m doing well. THIS IS NOT MY LIFE.
I take 27 pills a day, plus any of my needed 10 PRN options. I have 6 support groups, 4 therapy groups, 2 pdoc appts, 2 other doc appts, and 8 therapy sessions a month. Right now I also have 2 PT appts/week. I understand these things are keeping me going, but they’re not my life. I help people and go to church and sing in 2 choirs. I still want to die. I’m working the PERT Academy in 2 hours. No one will know. And since Angela’s not there there will be no refuge. It’s all a lie. Smile and move on. Somehow, I’m still here.
I wasn’t supposed to live. Don’t you understand?
© Michelle Routhieaux 2014
There is an issue going on at a group I attend. It is heated and ugly and hurtful. I had been handling the situation rather well, even people’s anger at me, until someone said to me yesterday he thinks the problem is most of the people there are “childless.” (pause ) Childless.
I just stared at him. I said I don’t see that as a or the problem. He said for people with children it’s different… Right… It is the equivalent of saying his views matter more because he got someone pregnant. A grand justification. A rather easy excuse to cut many people off, I say, not deal with feelings. Hate is much easier than truth. I went on about my way but the word kept coming back. Childless.
Yes, I am childless. I have no biological children. I have not given birth. I’m not a foster mom. I don’t babysit. I don’t care often for others’ children. Oftentimes children annoy me. Not by choice… I didn’t wake up one day and decide not to have children, set a goal of dying alone in a house full of cats. I am aware there is a timeline on motherhood and that I’m a good portion into it… Childless.
The word keeps coming into my head. Childless. (deep breath)
I think that men have it easier than women. The person weilding this word pointed out most of the people in the group are childless. I don’t think that’s true. In fact, a good many of the men in the group have children they or someone else care for. A man may complain about paying child support but isn’t caring for the kids. It is harder for a woman to walk away. Like a lion pride, men can fuck and walk away. The women do the work. Most times. If we can’t or choose not to, there are other options. Options of course we will be hated forever for. But yes, it’s the fault of the childless that I don’t hate sex offenders.
I have dealt well with being attacked on many sides in the current situation. For this one I have no defense.
© Michelle Routhieaux 2013
I am thankful for pain.
© Michelle Routhieaux 2013
(Note – Yes, I am safe.)
Just got home from RENT. I went with Taylor. Cried through most of it. Exhausted now.
I miss Brandon. I miss my theater family. I miss being me. All of the goodness that I am now isn’t ME. I miss Sarah and Mr. B, knowing I had a role, a purpose. All of that was taken from me.
It’s something we never talk about in therapy. We talk about sense of self. We don’t talk about me. Is it too late to get her back? Is she gone forever? Is the opportunity gone for me to be me? I so desperately need me.
I pulled a healing card today that says this, “It’s important not to get stuck in therapy. Therapy is a necessary boat that takes you across a rough river to a new shore. In time, though, you must step out of the boat and onto new earth and never look back.” There is a passage with it about not carrying the raft forever and being wary of letting supports be a substitute for life.
I don’t understand. Illness took me. Therapy took my life. Therapy forced illness to cough part of me up and became my life. I can’t get the real me back. If I let go of groups and therapy I have nothing.
I wish someone had warned me, told me, “Don’t let go! Not for anything.” But they didn’t. They were living. Now I am scared to breathe.
A little girl wants me to teach her to dance. I’m terrified. Please don’t touch me. You don’t understand.
Who am I?
I am a little girl.
I am a friend.
I am a dancer.
I am an artist.
I am a patient.
I am a child of God.
I am me.
I am not what I feel.
I want to scream out, “PLEASE HELP ME! Someone’s taken my soul!” But no one’s there to listen, only hear.
If I can’t be who I was, I don’t want to live at all.
You couldn’t tolerate the stress of who you were.
I can’t tolerate the stress of now.
Take your AZT.
I think if I got into a show it would bring me back. I would find me again. I NEED me.
Me is dead. She is gone.
No she’s not! I saw her last week.
Elvis has left the building.
My head hurts.
I want to die.
Do you honestly think in your state of mind you could do it?
I’ve done it before.
But not with the physical ailments.
What am I supposed to do?
I can’t do this anymore.
Sing, take drugs & teach.
Work your way up.
Peanuts to packing peanuts.
When do we start?
I want to die.
shame about my life
believing I can never have me back
pre-existing severe depression
Thankful Taylor is texting me. Need to take – and -.
Make a plan, Michelle. You can do this.
© Michelle Routhieaux 2013
Today was a little better. I didn’t sleep much last night. Woke up a bunch of times semi-clear and paranoid. I was really agitated so I took half a Xanax. I went to the dentist to talk with the billing lady and couldn’t think at all. Then I slept the entire day. But before sleeping I went to the mall to return something and actually shopped a little. It was a good sign to me.
I slept all day with my kitty next to me and went to group tonight. And J showed up at the end to see me. I was caught off guard but we had a good chat. A heart to heart and I was able to be assertive and not aggressive and listen actively. I’m proud of myself. We are now on, I guess, somewhat good terms. We are not a was but I’m not sure what we will be. For now we are slightly more than friends, which is okay with me. I got to share in group too. It was good.
My muscles are only moderately painful today and didn’t start bothering me a lot until this evening. Granted I did sleep all day, it’s still good. I’m hoping I’m on the tail end of this round. My head barely hurts today. Fingers crossed. It’s been a long 19 days.
My kitty’s sitting on the table giving me the “PLEASE take me to bed” stare so I have to go. I’m so grateful for today. When I have trouble walking I can still dance. When I have trouble talking I can still sing. And tonight I can pet my kitty.
Love you, Michelle
© Michelle Routhieaux 2012
I’m having a really hard time.
My muscles are fighting me.
Round after round of sustained contractions in my back, stomach, left arm.
Almost constant moderate to severe head pain. Small windows of reprieve. Weakness that makes it difficult to breathe, move.
My brain feels heavy, paralyzed.
It’s hard to think.
My mood is up and down. Sometimes euphoric or elated. Others suicidally depressed. Small periods of effective work. Minutes. Trouble standing. Pain sleeping. I wake up thrashing, throwing my head back and forth. My left hip keeps popping out. My wrist is improving slightly from the fall.
I can’t hear my stream of thoughts.
I can’t feel my feelings.
I don’t want to shop.
It’s 10pm & I’ve been ready to sleep for hours.
I need to sleep.
Some days I wonder how long this can go on. The voice in my head says “forever.” My history says usually about 2 weeks. When I’m in it I think it will never end. When I’m out I forget what it’s like. Right now I watch NCIS.
I have sharp pains in my muscles too.
Happy Sunday. (weary grin)
(eat chicken rice)
My organs get in on the action.
My heart, bladder & bowels. My stomach.
I started talking to a recorder on my phone. I’ve yet to transcribe. Feels good. Eventually they’ll be on the blog.
I’m really glad I write.
Mom’s boyfriend is going back to New York tomorrow. I don’t want him to go. We’re not buddy buddy but I like him. And he makes her happy. The house will be quiet without him. I feel lonely.
J’s back in town. (It feels good to write.) I haven’t seen him yet. He texts me on and off. I don’t want to see him. It was good while it was good. And it was bad when it wasn’t. It was better when he left. It will be better when it’s over. His texts and actions and inactions and lies make me angry. I’m proud of myself for keeping my boundaries and for knowing and believing at my core that the ending does not devalue the good. I just can’t do it anymore.
He’s texting now. I feel frustrated. I can hear the sales-pitch in his tone. I feel bad because I think he honestly doesn’t know or understand. I love him. I want the best for him. I want him to grow up. We can play, but I can’t be his mother. I can’t be his God. And I can’t be his taker.
I haven’t written in so long it’s like unclogging a pipe – the one from my hand to my brain. Reconnecting with an old friend. I do not control what comes out. I just watch.
My brain and body are fading. less pain. falling asleep. NCIS is like family.
My eyes feel glazed in plastic.
My feet are tingling. My tongue is curled.
My back needs to crack.
I’d like to paint my nails but my muscles are too weak. It’s better than being cramped.
I wonder what my Potassium level is.
I feel like I have to keep writing even though I have nothing to say. And I have to pee. Hmmm…
© Michelle Routhieaux 2012
I had a really hard day today. So hard I can barely write. Physical pain, funeral, ton of triggers. Nurse from my past, comparison to childhood friends, too much noise at music, people flirting with me, disaster at the end.
Please, I just want to be free. No one in my life but my mom now knows the real me. ME. I’m in here. Please. I’m not a “loyal jazz fan.” I’m a girl. A human. Someone who once was great, who is deeply pained now just to watch. It hurts to be alive some days. It hurts to be alive.
Photographer Actor Teacher
Dancer Writer Fundraiser
Singer Speaker Organizer
Idea-maker Tutor Traveler
Lover of Life
I was these things.
I was good.
Now I see myself as darkness and pain. Still. A motionless watcher. Shell of a soul. My core is still there but my body refuse. The worst part is that I know. I know what I am not doing, who I have become. And no matter how awesome others see it, it’s not me. I am not me.
When my mom picked me up after jazz tonight I just started crying. I was so upset – not at any person but circumstance. There was confusion over plans. I am not able to be spontaneous. I don’t drive. I plan my rides and they take a long time. Tonight there was a last minute switch and I didn’t get to go. I felt trapped, gypped. I can’t get out.
M- asked the other night why I don’t drive. I couldn’t explain it all. (crying) I failed at life. I feel ashamed & guilty & embarrassed. He called me out. I can’t take care of myself. I try to keep that a secret. I want to drive. I just can’t do it right now.
I want so much to be free. Not to feel lonely. To be independent. But tonight I hide & cry. I am not me.
© Michelle Routhieaux 2012
(dictated into my phone a few days ago)
Well, it’s 2:20 in the morning. I’m lying in my bed wondering what I should do. The kitty’s asleep. I would wiggle my feet if they weren’t curled up over my body. I have a really bad headache. I’m 5 medications in now and just finally calming down enough to be able to sit here and Facebook on my phone in the dark while almost crying. It’s ridiculous. I don’t know what’s going on with me. I don’t know how to fix it or if it can be fixed. It certainly is distressing.
I went to see Life of Pi with a friend tonight. It’s a fascinating movie. The story. The scenery. The filming. Amazing. But my head hurts. It’s hurts and it won’t stop hurting. I found this great medication that worked perfectly for me but I can’t get it. So I stopped taking it. And now I take it on and off but it doesn’t work right. I had something formulated at a different pharmacy but that wasn’t right either. So, I tried two rounds of both of them tonight and then Excedrin and then Maxalt and then I took some Xanax in the hopes that I would fall asleep while my head was hurting so bad so I wouldn’t have to deal with it. I have a giant ice pack over my face. But I’m not sleeping. Xanax usually makes me sleep, and my head still hurts. I’m not really sure what to do.
I’m really out of it lately. Disoriented. Having all sorts of mood crashes. I’m pretty sure it’s related to the headaches. I had my first ever command hallucination a few days ago. I was wandering. I was walking, talking to my doctor in my head even though he wasn’t there. I mean I was talking out loud but he wasn’t there. And I hear the voice of God sometimes, which is wonderful. But sometimes I hear this voice that tells me things that aren’t God. And that day the voice told me that it was time to kill myself. And um, I was a bit disturbed by that. You know, I just kept walking and I felt sad and I just thought, “No. No, I don’t think it is. I don’t think that’s right.” I was concerned.
I’m really glad I didn’t fire my therapist because I had a good session with him yesterday. I really needed it. Someone who gets me. Someone I trust. Someone who cares.
Tonight I sit here in the dark and I imagine what my ceiling would look like if it had stars and unicorns on it from one of those Pillow Pet Dream Lites. But I don’t have one. So I just imagine. I decided a few weeks ago that I need to go through all my possessions because my possessions overwhelm me, especially when I’m feeling a lot of pain, which is a time I’m least likely to be able to deal with them. So I decided that I would pack up all my possessions as if I was moving and then unpack them, get rid of the stuff I don’t want. Seems easier that way. I started, yesterday I think, and it actually works pretty well. I got through maybe like one or two bookshelves and it feels good. It works to pull my possessions out of their original environment and at least take them to another room. I want my life to be simple, and stress-free, and as pain-free as possible.
I watched a TED Talk tonight that was a great distraction while I was waiting for the meds to kick in. The talk was about how a broken body doesn’t mean a broken person. And a broken person doesn’t mean a broken life. It was encouraging. A good distraction. I’m so glad Divya turned me on to TED Talks. They are quite engaging for the mind but they’re so good to just focus on when you can’t focus on anything else. And the fact that my phone streams them is very helpful.
I don’t know what’s happening to me. Or why. Why I have these headaches. I’ve had a headache for at least a week and a half now, which means it should be gone in maybe 4 or 5 more days, I hope. They seem to come for about two weeks at a time. I just remembered tonight that I probably could call my headache doctor and be like, “Dude, what the fuck should I do?” but when I’m having bad headaches I really, I can’t do it. It’s too much. I don’t know what to tell him. And I can’t remember to call him. And if I do call him I wouldn’t know what to say. And even if I could say something, I wouldn’t know what he said back. I would feel confused and sad. It’s hard enough dealing with him in person. I like the dude, but he’s confusing.
I feel bewildered. And disoriented. It’s kinda like, there are thoughts in my head but I feel like my brain is paralyzed. Like it’s just sorta sitting there, very heavy, not doing any work. Like it’s on lunch break. But I’m still here. Waiting. I went out to dinner with some jazz friends last night and I just couldn’t really produce any viable thought. Any useful response.
I did so much shopping recently that I’m all shopped out. Anyone who knows me knows that that’s very very unlike me. I shop. I like shopping. And I do it a lot. But I don’t wanna shop any more. I just don’t feel like it. Lately I just feel like sitting and waiting for the pain to go away. Not even sleeping ‘cuz when I sleep my body hurts and I wake up thrashing my head back and forth and I don’t know why. I don’t know why. My food doesn’t taste good. And I don’t wanna eat. I’m not really taking care of myself.
There are a lot of stressors going on in my life. And I’m proud of myself for the way I’m handling them. I’m doing really well. But at the same time I’m crashing, hard. I told my therapist this week that, you know, I wouldn’t be surprised if I was in the hospital in a month. But I wouldn’t be surprised if I wasn’t. And he asked which I would prefer. And I told him I honestly don’t care. I really just don’t care about anything right now. I can’t think. And my head hurts. My head hurts. My head hurts.
So I sit here in the dark. And I talk to my phone. And hopefully I’ll transcribe you into a blog post, but I can’t do that right now. ‘Cuz my head hurts and I was hoping to fall asleep. If the drugs don’t kick in in another half hour I’m gonna start taking any PRN I have here for any purpose I have it in the hopes that it will do something. If it doesn’t, well, God help us.
I love you. Thanks for listening. -Michelle
*I did wanna say that this week I started hearing original music again. In and out. I would like to hear more of it. Sort of interesting. I wish I was a musician, that I could make it real, make other people hear it. Record or write down, transcribe what I’m hearing. Sometimes it can be amazing. It’s not really a good thing because me hearing original music is, well, a red flag. Some of it can be so beautiful.
The last time I heard original music was several years ago. And I was hearing the most beautiful electric guitar music. It was beautiful in the beginning. And then I guess it kept being beautiful but it didn’t stop for about three weeks and it was just wretched. It sorta wore on me. But if I played the electric guitar it would’ve been wonderful wonderful music. This time it’s more like a soundtrack and it comes in and out. I do wish it would come more in than out. I like hearing the music of God.
© Michelle Routhieaux 2012
I’m sitting in the quiet of my living room. Zoe is wrapped up in a blanket beside me. I feel time moving. I don’t try to fight it.
Mom and Don are asleep. I’ve been tasked with waking them up in an hour so they can drive to New York. I don’t want them to go. Mom’s nervous. I want her to have fun. I want her to enjoy her life.
I’m just waking up from several weeks of intense fog. Something happened to me and it was not okay. There isn’t really a word for it. To me, it was rape. My therapist says it was “a physical trauma to your sexual organs.” Any way you put it, it fucked me up. I wanted to write about it but I couldn’t think or write or do anything. So confused, so scared. Not moving. My doctor doubled my Seroquel and we wait.
Yesterday I felt my brain coming back a little. I’m starting to think. My head hurts. My eyes feel open. I did have flashbacks today but they are fewer. I still can’t take in information. But tonight’s stress of Mom packing and leaving, and my Sunday night radio, and now the quiet has me able to write for a moment. My throat feels filled with vapor.
I feel so far away from last week when Jesus was a unicorn and Christmas a rainbow. Dr. N said, “It makes me sad to see you like this.” I just stared. I am emerging into anxiety, agitation & physical pain, which is probably a good thing. Better on the whole to be freakin’ out than non-responsive, like in the ER. It doesn’t feel that way.
Strange how waking up, coming back, is unwelcome. There is a comfort to the peace, to being sick. When I am incapacitated I take care of myself. I put myself first. I give me permission to feel and cry and do what I need to do without guilt. The rest of the time I’m supposed to be perfect. I’m not perfect. I don’t want to be. But it’s expected. I should push myself. I should do it anyway. I should. But I is not me. Why can’t I have compassion for myself always? Or even most of the time?
My head hurts.
I need to cry.
Mom’s going to New York. I feel overwhelmed. I want to go back to sleep.
I am not okay.
© Michelle Routhieaux 2012
I went to an ANAD meeting today. (I’m feeling anxious right now.) I went to the meeting and I realized how grown-up I am, how much progress I’ve made. I am not in that anymore. I’m not even in me. I worked for S-. I’m being opened to wisdom.
I have better boundaries. I understand why I do things. I practice mindfulness and DBT. I plan. I take care of me. I let things go.
Today last year I checked into CAP2. I could barely talk. I wanted to die. I was terrified. Dr. N was mad at me for giving up. I was so tired that I didn’t have it in me to try. Too tired to want to get better.
(deep breath, crickets) zap.
I rested. Then I did the work. And all year I’ve been working, learning, growing. Experiencing. Life.
I am more able now to deal with tsunamis of emotion. I can handle physical symptoms without freaking out. I made it through several crises, one of which I really would’ve preferred to be inpatient for, on the outside. I did it. And I’m doing it. I’m doing it.
My set of symptoms hasn’t changed much, but my ability to deal with it has. I also have stuck faithfully to the charting system I created with Dr. N in the hospital. July 28th will mark one year. It’s been good seeing him often and having a system we both understand and agree on. I trust him.
I’m finally to that point of being able to think about creating a life worth living. I want more for me. Marc wanted me to do that in 2008. I wasn’t ready. I don’t know what it will look like – probably a lot different than the picture in my head – but I’m open to ideas. I’m open to what God has planned for me. I’m open to God.
© Michelle Routhieaux 2012
I am SO tired. I skipped group tonight, which I rarely do. My body is rebelling. I don’t blame it.
I did some work for a friend today, helped with some organizing and grounding. I knew about halfway through I needed to stop but I stuck it out. I wrapped up nicely and went on my merry way. But I was barely breathing and in full body freakout mode and when I got to my other friend’s house (Mj) my legs gave up on walking right and then came the dizziness and head pain. I am so tired that it’s hard to stay upright, yet I’m not sleepy. I can’t explain it. Mj understands. I really enjoyed staying with her, having some moments to myself.
I find myself questioning if doing this work (helping) is worth it. Is helping and getting out of my house and my head and being somewhat social worth the toll it takes on mind and body? My friend doesn’t know what I’m going through and it’s hard for me to explain. Hard to explain why 4 hours of help causes massive body shutdown. Why I can organize and create systems but not eat. Why I LOOK fine when I’m really not. And it’s harder for me to say, “Hey, I’m not ok.” (tears) I want to be ok. I REALLY want to be ok. I don’t want to be a secret and I don’t want to be a lie. And I don’t want to feel ashamed… But I do. So I just press through it and deal with the fallout. I want to fall in.
I went walking with Mj and her dog a few times. It felt really good. I just got home to my mom on the phone with her boyfriend and Zoe. I don’t want to be here. (deep breath and tears) I can’t make it go away.
I’m so tired. My face burns and I’m tired.
© Michelle Routhieaux 2012
I know I haven’t blogged in forever. I feel it only fair to give an update.
Today I woke up with a horrible headache, probably from a new medication last night, and I cried and cried and cried. I put on a pretty dress and went to lunch with a friend. I’m so glad I have good friends. When I got home another friend was waiting in my driveway to take me shopping for items for my Comfort Drive. I’m exhausted.
I’ve been really all over lately. I haven’t posted because there haven’t been many postable things. I’m swingin’ and switchin’ and crashing all the time. In the span of a day I can hit happy, productive, rageful, depressed, suicidal and euphoric. There are hours that I am a Rainbow and light is God and God is in me and I am God. When I hear him talk to me and I twirl and skip and there is this peace like I’ve never felt. A quiet calm in the middle of the storm. My head hurts almost constantly and whatever’s going on in my neck comes and goes. Yesterday I found myself hiding behind some dumpsters crying and fighting my thoughts.
My psychiatrist says he’s proud of me for surviving the crises and that I’m doing a good job. My therapist is becoming a life coach. My mom has a boyfriend and a job. And my cat cries a good portion of the day. I agree that I’m doing a good job handling crisis, but I want to be more stable. I want to be able to live one day at a time instead of fighting for moment to moment.
I saw a new doctor yesterday way the Hell up in Encinitas. He seems a bit cocky but like someone I could trust. He wants me to get off as many meds as possible to figure out what symptoms are side effects and what symptoms are organic. This terrifies me, as I know what happens when I don’t take medication. Last summer I was all for a wash. That’s what they call stopping all your meds. I was ready to do whatever it took to get better. But right now I just want to stop hurting. I want to be better or dead. A wash is a long painful process that doesn’t really establish any betterness. It’s sole goal is to bring out the worseness and identify the actual problem, which in this moment I don’t care about. I care about not hurting. And about preserving my inpatient Medicare days. I might be willing to do it at a facility that did not affect my Medicare days, definitely not at home.
I use my phone a lot as a coping skill and tool. I work on the bus, communicate, look up my medications and bus information. I went to group with my phone a few days ago and didn’t leave with it. It walked away. So now I have my old phone, which is great for texting but does none of the things I use my phone for now. I feel like I’m in some other world. Like everything is changing and it’s only a mirage. Today I shopped with a friend for stuff for people in the hospital. I had a good time. I felt bad because he was paying and I was shopping and I usually finance my own impulsive spending. But it was his idea. I just feel like I’m on the edge and I’m livin’ it.
I keep fighting. I’m not writing much. I’m switching too fast to follow. When I do write it’s in several colors. I go in and out of being afraid of certain colors and there are voices talking/writing that have their own colors. I’m exhausted. I need some time as Rainbow.
Thanks for listening. I really appreciate it.
PS – I gave up on brushing my teeth after a bad encounter with the dentist. I still like the toothpaste.
© Michelle Routhieaux 2012
Yes, I am. Stop reading my mind.
I don’t know what’s going on.
It’s hard to breathe and move and walk.
I am so tired. Can’t tell if I’m hungry.
I don’t know what I’m searching for and have little energy to do it.
Awhile back I was searching desperately for the answer to what’s wrong with me. Now I just watch it work. I guess it’s like learned helplessness. I’ve spent so many years listening to doctors tell me there’s nothing wrong with me that even when I know something is really wrong I don’t waste my energy telling them because it’s not worth the hurt. It hurts when they try to convince me I’m fine. I’m not stupid. I’m not making things up. I wish I had someone who believed me AND was qualified to help. And who took my insurance, of course. Good luck with that.
I put on my FB last night, “I’m enjoying my life.” I am.
Last year was about freaking out and struggling and growing and learning how to die. How to accept. This year is about fun, letting go. Learning who I am and how to enjoy me. To relax and just have fun. This is what I’ve got. This is me.
I was angry today. I remembered a few nights ago my mom once told me I passed out when I was little. I finally remembered again today and asked her what happened. She said I fell and hit my head on something when I was 2 or 3, “a table or something.” Apparently I was out for “a few minutes” and had a concussion. I don’t know how she never thought this was relevant to tell me. Just like I never knew my grandpa died of heart disease until last week. SO IMPORTANT! (sigh) I knew I had a history of head trauma but… How could she think that was unimportant? At the very least it skews the data for every research study I’ve ever been in.
I’m trying to watch the Tonys. I can do a few minutes at a time. I feel agitated but very weak. A quite annoying plight. It’s like trying to light a cigarette with a match in the rain.
I’m so tired…
Confusion makes everything clearer.
I’m waiting for the answer to come to me.
© Michelle Routhieaux 2011
I am afraid of this clock.
I found it staring up at me from a pile of magazine clippings.
This clock is my life.
I have no concept of time, which usually doesn’t bother me. But lately the things I have in place of numbers have fallen away and I am not able to navigate very well. My confusion is growing by the day, and I can’t process or remember things. I am so tired. I don’t know what’s going on.
I am the yellow clock.
My motor keeps on ticking, even though my hands are broken and my numbers have fallen away. I would buy it. The tick’s all I care about anyway. I don’t want to know what time it is.
Time increases my anxiety. You have to do this right away or that by tomorrow. Hurry up. Call him now. Answer the phone. Have you sent that email? Did you prepare for tomorrow? What’s tomorrow? I don’t even know today. And I don’t care about tomorrow. Can’t you see?
I don’t know what’s going on in my brain. Whatever it is is good at what it’s doing. Last year I thought I was gonna die, and I didn’t. But I’m not convinced that I’m here to stay. Or even if I am how much longer I will be Michelle. I’m scared because I don’t know it, I can’t control it and it won’t go away. It is slowly taking me.
The clock cannot fight the clock maker. I can’t even see what He’s doing. I just watch how it affects me. I once was an intelligent person. Now it’s a struggle to order dinner. I don’t understand things. My emotions are not in my control. I don’t read. I write when I can. And can is fading. I can’t remember. (staring…) Please.
I am the yellow clock.
If you find me please tell me what time it is and what that time means.
What is the purpose of a clock?
To be a foundation, a guide. To know what’s going on at all times and to be right.
To always be on, to be perfect, to propel the world.
So what happens when a clock does not work anymore? How do I become an art piece? What do I do when it’s my job to sound the alarm and I don’t know what time it is? When I am the fire alarm and I’ve forgotten what fire is? When I know what fire is but I can’t make a sound?
I don’t know how to be an art piece. I just know I need to learn.
© Michelle Routhieaux 2011