Midnight Musings

7/23/16     12:44AM

Trying to write something difficult… So I went shopping… and put stickers on my keyboard. I was sitting on the floor where I usually sit but the smell of dog urine on the rug and the drama of Cedar Cove on the tv have pushed me to the kitchen. I don’t know what to say…

(eat cereal and scan a drawing to distract)

My brother died last week. Well, almost 2 weeks ago. I found out last week I am the legal next of kin. I’ve been asked to sign over my rights but that’s not what I want. I’m very angry about some of the things that happened, and worried about the effect of my actions. “Family” can be such a nasty thing.

I also found out on Thursday (yesterday) that if I want to continue on in Phoenix Rising training I have to do it in Colorado or Vermont, that I can’t do Level 2 here. It’s what I’ve been looking forward to for months. I already didn’t know how I was going to pay for Levels 2 & 3. I didn’t anticipate adding travel in so soon or needing to be stable enough to travel on my own by November. I can’t keep up. I don’t know what to do.

My drawing this week said I’m not alone and that I’m not running. I feel myself not running. In fact, the world seems to be standing still. But I do feel alone. Very. I wish I could feel that moment of wisdom where I wasn’t.

Today I got an email from the management of a choir I sing with. They had talked about us singing at some event on the Midway but never sent out info. Now it turns out they’re giving us a month’s notice to commit to two days of rehearsal in a row followed by the show the third day. This would be great except I just bought concert tickets for a whole group on the first day and I have a support group event the next. Fuck. I don’t understand. It’s Comic-Con. Why can’t one of those superheroes come and rescue me?

I feel like I’m bitching about stupid problems no one needs to hear about anyway. Except for I need to hear about them and I’m eerily quiet. I’m doing the best that I can. I really am. I’m taking my meds, going to my appointments and therapy. I see myself stronger and more grounded than years ago. I know what I want and I’m not afraid to stand in the fire for what’s right, even if I get burned. I’m just learning what it feels like to rely on faith.

I ran over the large remnant of a blown-out tire on the freeway Wednesday evening. I didn’t notice a problem until last night when I stopped to pop the bumper back into place. I told my mom and she discovered it has torn that piece under the car that stops stuff on the road from flying up into the important parts of your car. Lovely. She duct taped it. I think it needs more than tape but she won’t let me file another insurance claim. Last month I scratched a car in a parking lot. For the trivial nature of it it was quite the trial.

I miss how life used to be. I know it sucked but I miss having friends. I miss hanging out and liking each other and staying up all night at a coffee house and having pancakes in the morning. Now most of us have gone our separate ways or are busy or crazy or, let’s face it, dead. When I needed someone to sit with me this week to figure out my brother’s arrangements I literally didn’t know who to call. I went through my phone and finally settled on getting resources from some people I’m on a board with. I cried almost the whole day. Then I sucked it up and helped a friend. I didn’t want to lead a group on Monday but I took one when needed. And when I needed to pass it off at the break because I couldn’t take anymore there was no one there to take the clipboard. The people who used to work crises with me are not there anymore. My transition committee didn’t even show up to the last meeting – not a single one of them. (pause)

Maybe my relationships are affected by my place in the group, but I know that’s not all of it. (fall asleep on the floor) I’m friendly but distant. I don’t share a lot with people, though they share so much with me. I don’t show up to social events I’m invited to, most of the time because I am legitimately tired. And somehow, thanks to -, everyone thinks I call PERT or force people to go to the hospital whenever there’s a crisis, which isn’t true. I miss having friends.

I really want to complete the Phoenix Rising training. And I want my family not to hate me when I have the guts to make my decision regarding my brother known (probably tomorrow). I don’t think doing my best is wrong. It’s just hard sometimes.

© Michelle Routhieaux 2016

I am SO hungry

1/6/12     11:28pm

I am so hungry. SO hungry. I can’t BEGIN to tell you how hungry I am. Even though I know I shouldn’t be.

I go through phases where I don’t eat much and am not hungry at all. Then there are times like now when I just can’t stop eating. I don’t have an eating disorder. I’m not on a new medication. I’m just HUNGRY. It’s so frustrating. I’m literally salivating, even after just eating Chinese food and drinking a bottle and a half of water.

I don’t know what to do about it. My hypothalamus hates me. There are so many random things going on with me. And last week’s mania. And my staying up super late now yet sleeping 12 hours a night when I was going to bed earlier and sleeping about 8 hours. And my inability to control my body temperature. And getting fever blisters on my lips again. And feeling SO cold. And now HUNGRY. And more horny than usual. What the fuck is going on with me???

I can’t keep eating and get fat again. I can’t tolerate being fat. But I can’t tolerate feeling hungry either. I Googled around for appetite suppressants and all I found were diet pills. I don’t want to lose weight (although it wouldn’t bug me). I just don’t want to gain it by eating when I couldn’t possibly be hungry but feel starved. This is a problem for me.

If I don’t eat, I continue to feel hungry. If I don’t eat for long enough, I get sick. But not knowing when I’m actually hungry interferes with my knowing if I’m going to get sick. If I do eat because I feel hungry, I don’t feel full. I feel even MORE hungry. Which is worse. But I have to eat something. And if I don’t eat, and eat and eat, it’s like I’m going to explode. What is the solution? Is there one? Or do I just have to wait until my body swings back the other way to eating almost nothing? A few months ago I couldn’t eat more than half of a kids meal at Panda Express. Today I finished off a two entree plate, with the chow mein, 4 spring rolls and 3 sodas. And, while the physical fullness was painful, I still felt hungry. As I do now. I don’t know what to do.

(sigh) I’m hungry.

© Michelle Routhieaux 2012

Overwhelmed by Technology

9/2/11     1pm

I feel overwhelmed by people and technology. And noise and light and everything else. But right now it’s technology.

Can you name 10 things you interact with every day that don’t require electricity, aren’t connected to the internet, and don’t run on batteries? I’m not against these things but they’re taking over my life. My 10 are my journal, purple pen, cat, furniture, backyard… Well, I guess I don’t have 10.

I find myself surrounded by technology, which isn’t always a bad thing, but people use this technology to get to me. Something is always beeping or ringing or my mom’s phone alarm is going off. She sets that thing for EVERYTHING completely unimportant. Between email, FB, phone, text, SoU and Google+ I am completely available to harass all the time. I’ve taken up reading on my phone, which is great for the 15 seconds it’s not beeping, buzzing or ringing. I wish I never got a smart phone. And I got an i-pod touch from a friend recently when mine disappeared. I’m very grateful to have portable music but I can’t stand the damn thing. Touch is not my mecca. Give me buttons. I want to control it with my eyes shut. It adds to the confusion, the overwhelmedness. WHY IS EVERYTHING SO COMPLICATED?

And all these damn things emit their own energy. Energy, energy, energy. Even when they’re silent they make themselves known. And simply looking at them I’m overwhelmed. Everything is on the computer these days. WHAT HAPPENED TO PEN AND PAPER? I’m FREAKIN’ OUT. 

My two phones, i-pod, camera, tv, microwave, computer and radios should NOT be running my life. The first thing I see when I wake up shouldn’t be email. I do not want to be addicted to my smart phone, dependent on technology. I even need my scanner now to communicate with my doctor. The machines are taking over.


I could turn them off but that would be allowing myself to a) admit I’m not important, b) possibly miss something important, or c) deal with my own thoughts. Even more overwhelming.

I am so agitated right now. I need drugs.

© Michelle Routhieaux 2011


3-29-11 11:43am

I know I haven’t blogged in forever. Sorry about that. My blog starts in my journal and there hasn’t been much I could put online.

I wanted to check in, let you know I’m not dead. I spent 3 weeks in the hospital trying to get my meds right. Still working on that. Not even close. Tweaking my list of diagnoses. Dealing with voices in my head, confusion, and big mood swings. Random happiness. I’m functioning more efficiently than a month ago… It’s not good.

I went to a clog convention this weekend that was a short reprieve from the madness, polka-dotted with madness. I’m so grateful for Scotty. And for learning I still can dance. Pain or not, it’s do-able. And I decided I should teach dance again and came up with this grand plan. I brainstormed all day and was so happy. And then I got home. And now none of it seems possible. I don’t understand. A friend wrote on my FB wall, “Michelle has returned from her alternate life on Planet Scotty to the real world on Planet Shit.” Exactly. It’s like detox.

My mom’s having surgery tomorrow. Instead of spending time with me she’s cleaning the house. What? She’s freaking out about it. My doctor told her I am NOT to take care of her.

(break for Mom to freak out in apology for something she didn’t do. I can’t take this. I feel like I’m gonna throw up. And I’m pissed.)

I went to my group last night. I just wanted to talk. Instead I facilitated the most intense group of my life. My stalker is back and came to my group. I also had a very manic guy. I’m really glad I had a good group there to help. I can’t do this. I am alone.

Right now I am supposed to be supportive and empathetic of my mom, productive for my choir and the group, and effective at taking care of myself. Well, I’m not. I’m angry and sad and completely NOT effective. My new med’s making me fat. And I don’t know what to do. It is simply too much.

Soooo… I stopped for a moment to pass you a note. (deep breath). Lady Gaga sings “Just Dance” behind me. You have no idea.


© Michelle Routhieaux 2011

Insufficient Funds

12-20-10    12:10pm

I fucking HATE PEOPLE! Oooooooh! I just want to scream. All they ever think about is themselves. You should read the messages I get – email, text, IM. They tell me their problems, what they want, why they’re mad. Why I should care, say “poor baby,” kiss it and make it all better. Most days I can handle the rush. Not today. I’m not afraid of the storm but don’t shower me with shit.

There are some people who are predictable – like the girl who texts me symptoms. Not “Hi, how are you?” but things like “my scalp is really itchy”

(call from a stupid person)

or that she’s having horrible heartburn. There is the one who calls but doesn’t want me to answer, the ones that are 99% of the time mass messages, and the ones from people who always want my immediate attention. I am surrounded by people in various states of disrepair.

And then there are people like J- who send multi-text rants to me about my friends, complete with insults against me, with not so much as a forward and are CONFUSED when I’m upset. What? About 10 texts in I texted back, “J- I don’t need this right now. You just randomly text me to bitch about S- and then insult me for no apparent reason. Leave me the fuck alone. You didn’t even ask how I am today.” His response? “Are you ill? If so, my apology.” Ill or NOT this is ridiculous. He continued his rant and said he’ll text me later.

I have a board meeting tonight. My mom is freaking out about our mostly bare Christmas tree and her online bill thing not working and the rain. She said to eat cereal for breakfast but when I was eating it changed her mind and said I should eat a bagel. I open the door to hear the rain. She shuts it and goes back in her room. I’m gonna make brownies. She decided maybe she should make them. Maybe we should NOT decorate the tree we fought so much about (because she refused to decide) because of Zoe. Or MAYBE since it’s raining we should only put on the generic glass bulbs that shatter instead of the breakable ornaments we love. I don’t get it. Then she cries because she’s making me mad and if I’m mad it must mean she’s a horrible person and she should just die.

**NEWSFLASH! I have feelings too!**

I don’t mind helping friends in need but it’s not my job to rescue you. And if I do and you jump back in the water, don’t expect me to happily risk my life for you again. I woke up to a call from Illinois about this woman’s brother who is bipolar and has a restraining order against him (blah, blah, blah) for threatening to kill his wife. Do you think that’s a happy way to wake up? Everyone wants something from me. There’s not much left to give.

I’m so angry…

Now Mom’s bitching about food. She’s upset that I don’t want to eat because she told me to eat cereal and I did. She said that’s not what she said, then that it is. Is it too much to ask for a little peace? When the walls of my castle are under attack it would be nice if the people inside didn’t add to the stress.

There is a board meeting tonight. I hope it goes off without a hitch. I’m tired of people saying they’ll do things and bailing, doing things that require damage control, or being all bitch and no work.

I am tired. I feel weary and beat. I want to be alone. Just leave me alone. I want to go somewhere on the bus in the rain, to get wet, to listen to music. To feel my jaw unclench itself, my eyes let go. I want to ride the train. Get out of my way. You’re cramping my brain.

The bank of Michelle has insufficient funds. Please seek help elsewhere.

© Michelle Routhieaux 2010

I can’t fix it

11-26-10     1:26pm

I can’t fix it. No matter how hard I try. I am only worthy if I can fix it. Therefore I am worthless. I can’t fix it. I can’t.

Today my heart feels like it’s on fire. There’s no oxygen left and I’m suffocating. I went outside because my toes were numb from the cold. Dichotomy of lives. I had planned on Black Friday shopping. Instead I am here with my family. The guys are working. Mom’s raiding the house for stuff to send back. I’m not going with them. J- is close to starving. G’s house is infested with rats and mice and God knows what else. There is no money. There are few jobs. No hope. My heart, it hurts so bad. I love them and I can’t fix it… I can’t fix it.

© Michelle Routhieaux 2010

Cold Sweat

10-16-10              11:10pm

Cold sweat. I feel overwhelmed. I don’t want to be alone, but I don’t want to be around people. I am exhausted but I don’t want to sleep. When my body won’t move, my mind won’t stop. When my mind won’t think, my body can’t rest. It’s cold and I’m sweating. The music in my head I don’t always understand and it’s all a blur. What is today?

Today, after sleeping for an hour, I worked a resource fair at a walk. I walked the 5K, talked to a girl who used to be my best friend and was reminded how much I miss her. When I am hungry I don’t know what to eat. When I am starving and wait a moment I forget. And when I get food, I don’t want to eat it. Or I can’t slow my eating enough to breathe.

The house is quiet tonight. I’ve been looking through pictures. Not the ones I wanted to be looking through. There are so many rolls that don’t matter. I really don’t give a shit about the 12,000 dance conventions I went to and every dance and every scene of every nutcracker. They don’t matter. They’re not my life. It is the people I remember. And it does feel good to remember. I forget so much these days that remembering exactly what happened on a particular day 15 years ago feels good. I left my purse at Chili’s the other night. I usually remember my purse and forget the food, but not this time. And I had no idea I’d left it until I tried to spend money. And it didn’t faze me. I didn’t really care.

Cold sweat. Trapped in my own body, my mind. Looking for pictures of me and my dad. I want to see him. I want to line up the progression, to watch it. My knowledge and experiences change the perspective so much. He can’t stay hidden. I don’t want him to be a secret anymore. He doesn’t even have a headstone. For that I feel ashamed. A bad daughter… In reality, just a daughter with no money. (deep breath)

I can’t keep running from myself. I am tired. So tired. 24/7 distraction is not sustainable. My therapist assumed my agitation is mostly from the whole mystery disease thing, but it’s not. When I wake up in the morning I’m not calm. I get these waves of stress/anxiety/agitation that aren’t connected to anything. I wasn’t particularly upset or triggered yesterday and I got so agitated that I was literally walking in circles in my backyard for 15 minutes. I don’t understand. (breath) I’m not sure I want to. I just want it to go away.

My therapist also asked what would happen if my symptoms never got any better or worse, stayed the same as they are now, and I lived to be 100. I think that would be the worst of all. For now, cold sweat.

© Michelle Routhieaux 2010

Too Much Muchness

10-13-10              11:15pm

I haven’t written in my journal in 10 days. I knew it’d been awhile. I’m so tired.

I went to see my psychiatrist today. He didn’t say much. There isn’t much to say. I am so stressed, so overwhelmed. If my manageable stress level is a 10, I’m at a 25. I just kept thinking today, “I can’t do this.” I can and I am but I don’t want to.

I don’t remember the last time we talked but I went to San Francisco to visit a guy I met in a bar two weeks earlier. Crazy? Yes. Impulsive? Yes. Much needed break from my life that I don’t regret one bit? Yes. I need more times in my life like my weekend with Matthew. I wanted to blog all about it but my mind’s all a jumble. It was a mostly stress-free time away from this chaos. I am grateful.

I don’t remember much of this week. I’m having a lot of memory problems. But between Friday and Sunday I volunteered 34 hours at events and slept 31. My body was and is very angry. Two day psych conference, awards luncheon, gospel event and Little Italy Festa.

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At the psych conference I took a nap by the pool. Just couldn’t stay awake. I really wish I was psychotic. I need to get away. The week before SF I was shopping every day. Rapid-cycling hypomania. Serious retail therapy. It’s all on cards but for some reason I don’t have enough money this month. And I don’t know why. I just know it’s one of my top triggers. I have to get away.

Just as I was leaving for group on Monday my neurologist called me and did just what I asked him NOT to do. He gave me the results of the box test I’ve been waiting for – autosomal dominant ataxia panel. He couldn’t have said more in person but I would have preferred it.

He said the results were not positive or negative. What? Do I have SCA 1-17? No. Do I have DRPLA? No. Do I have something else? Yes. What? (big sigh) A 9 base pair deletion, a “mutation of unknown clinical significance.” What? (deep breath) He was confused by the report and will mail it to me. In plain English: I was right. I have a genetic disorder in the same movement disorders realm. HOWEVER, the disorder I have is special. It is uniquely mine (and probably my dad’s.) It has yet to be named or identified. I have never been more angry not to have an identifiable deadly disorder. (My fingers are tingling.)

I wanted to talk about it in group but there wasn’t time. M- said we’ll just start a foundation and have a telethon. Not helpful. My bff said at least now I have proof it’s not just in my head. And while that’s true, it’s little consolation. I don’t need proof that what I’m experiencing is real. I’m living it!

When I thought I had DRPLA I was pissed that the specialists are in Japan. But there ARE specialists. There are people who get it. Now it’s just me. Really. And my mom’s denial is in full swing. She’s trying to convince me that maybe those genes just code for what I’ve already been diagnosed with. (sigh) I’ve never felt more alone.

When he told me I wanted to scream or cry but couldn’t. I still do. It took Xanax, 2 scoops of ice cream, group and a steak just to get through the night. I feel like the innermost layer of my skin has decided to secede from the union and is attempting to escape. It’s like my body is exploding. I can’t breathe or I’m barely breathing. I can’t get away from myself and this plus the stress of group and choir and the street team and money problems is killing me.


I just need to go somewhere quiet and scream and cry and think. And walk. I don’t understand. I am so sad, and so scared. I thought maybe this time I’d get an answer – one that would help me out… I wish my dad was here.

I tried to get a pedicure this week but my anxiety was too high. I just want to get away. Mom asked why I’m crying. “Because my life sucks and I can’t fix it.” (“Unanswered Prayers” by Garth Brooks) My whole life doesn’t suck. But right now does. I don’t need problem-solving or grand ideas or positive spins. I just need to feel this. It’s big. And it’s real. Then I need to find a genetics dept that will take me on as a case study.

There’s no one to go to to ask if they’re having this too, how they coped, what happens next. No group. No doctor who understands. I told my mom, “I bet ya didn’t know you were sitting on such a mine of research data.” (deep breath… my fingers are still tingling)

I need some money to fall from the sky so I can work on some projects for me to distract. This is too much.


© Michelle Routhieaux 2010