Category Archives: Journal

Feelin’ Good

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11-6-10     9pm

Ugh. Long day. I wanted to feed the ducks but we didn’t get to that. An hour plus at a Super Walmart is more than I can comfortably handle. I can’t screen out excess stimuli and it’s just too much.

That said, I feel pretty good right now. I’m stuffed. We went to Janet’s Cafe for dinner and I had the best banana cream pie I’ve ever eaten.

Observe & Describe:

I feel warm, calm.
I see Zoe playing.
I hear Mom rustling plastic in the kitchen.
I feel my hair on my face.
I hear the cars outside.
I feel the air in my nose as I breathe.
I feel the texture of my bottom teeth with my tongue.
I see the colors of my pjs.
I notice the curve of my nails.
Feel the grip of the pen.
I feel tired, and content.
I feel all the places my body connects with the couch. I’m grateful it holds me up.
I hear an airplane.
I recognize I am breathing.

I am so grateful to be alive. God is good. :)

© Michelle Routhieaux 2010

Gratitude

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11-5-10                11:46pm

I find lately that as my level of pain rises so does my level of gratitude, my ability to be in the moment and to appreciate the beauty in each little thing. I am so grateful for the hugs, and the colors, and the stitching. The air. The smell of a desert summer. Everything as a piece of art, unique in its own way. It feels good to feel grateful, even in the pain.

What I am grateful for tonight:

Sacha
Elijah
My ipod and its music
God
Chicken fingers
A soft couch
The roses
The tree in front of the hotel
Mags
Stephanie
My new pens
My new shoes
Sarah
The new piano guy
My mom
Pizza
Texting
Facebook
My clothes & my socks
My hairclip
My crayons
The trolley
My understanding of Mindfulness
My ability to laugh
My kitty
My networking skills
My memory
My ability to write
Jango
TV
My blog
Jazz music
Cool summer nights

© Michelle Routhieaux 2010

Saved

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11-5-10                10:37pm

I found myself in that place a few weeks ago. That place where I could not go on. My agitation was unmanageable. I could not fix it or stop it or understand why. I wasn’t running from a stressor or event. I could no longer stand my existence.

And I realized late one night that this was the mindset in which I should take myself to the hospital. I was losing control and the danger level was too high. But in that moment I realized I don’t want to be saved. I also realized there was no one I could call, no one who could listen and just be with me in that feeling. No one. I had to do something so I doubled my Seroquel and thankfully (miraculously) felt much better the next day. And when I woke up I finished the thought. It’s not that I don’t want to be saved. I do. I want to be saved from what’s ravaging my body & mind, but not from the thing that’s saving me from the thing no one can save me from. That I don’t want.

It’s been a few weeks. The mindbending agitation has not returned. I feel calmer – more confused. More movements. More colors and creativity. Dissociation. I need to dance and paint the sky. I don’t remember my problems, which is both good and bad. The thing I notice is that I am lonely. And it makes me think a lot about death.

The need in me for comfort is so high that I will do almost anything. I made a list this week of why I’m not killing myself and I was proud of myself for realizing that I don’t actually want to die. I want the pain to stop. I want to be held. I did not feel safe Monday night so instead of going home I slept over with a guy I barely know. It saved my life. He doesn’t know that. Doesn’t need to.

I’m quiet tonight in the music and the chaos. Too much stimulation. I need quiet. I need love. Saved.

© Michelle Routhieaux 2010

Coping Skills

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10-31-10              1:39pm

I’ve used a lot of coping skills to get through the past few weeks. I want to share and remember them.

Recent Coping Skills:

Radio
iPod
Play with kitty
Warm water on hands
Sleep/Nap
Play-doh
Writing
Not writing
Facebook
Structure
Deep breathing
Live music
Distraction
TV
Taking pictures
Food
Shopping
Going outside
Comparison
Medication
Hugging my teddy bear
Letting myself feel
Crying
Rocking
Talking to people
Sharing in therapy
Forgiving myself
Forgiving others
Organizing old photos
Cleaning/Organizing/Sorting
Singing
Walking
Finding somewhere quiet
Keeping a calendar
Acknowledging what I’m grateful for
Prayer
KLOVE
Jango
Drawing
Chatting online
I Did It Lists
Texting
Watching movies & crime dramas
Sex
People list – made a list of people in my life (I tend to forget them)

© Michelle Routhieaux 2010

What a Friday Night

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10-24-10              2am

On Friday I took the trolley to my usual spot for music. The music was great but my experience was marred by pesky unrealities to most of the world. I knew at the first thought that something was wrong. It was a good thought though. This is my journal’s account from then until now.

10-22-10              7:04pm

Automatic Thought: I am a miracle. :)

I’m riding the trolley to see -. Got my mind on autopilot with my ipod. Good music. Good weather. I feel calm, and happy. I think content is a better word. A pleasant calm, contentness. I was really mad at Ken today, but in this moment I just feel good.

Today I woke up from the strangest dream. It was scary and disturbing. I want to write but I need to just listen. I’m off.

7:13pm

I feel bulletproof & transparent, like if I put my arms out I could rise up and fly, hover. Impenetrable. Safe. Unfazed. Nothing can touch me.

8:05pm

Mind still floating.
Wide eyes.
Heart strong but not fast.
Body – nervous. Mind – mostly calm.

8:17pm

Just listened to S- & C- talk in the bathroom. Nothing changed. I still feel invisible here – not translucent but not part of them. J- is sufficiently obsessed with me.

*The Very Thought of You
– black fountain ink pens and purple
– ice skaters dancing and painting the sky

9:02pm

Cold sweat
Slightly confused
My insides are tense but my outsides are not.
My hair is bugging me on my neck.
Just ordered fries and pickles.

10:35pm

My thighs hurt – it’s like they’re constantly contracted.
It hurts my face to smile.

10:51pm

Insides tight.
Barely breathing.

11:51pm

General sense of impending doom.
Hard to stay conscious.
Hard to stay upright.
Exhausted
Shaky/trembling
Must consciously thinking about breathing
Cold sweat
Headache
Tongue out randomly
Nose twitching
Peeing all night.
Need to get home NOW.

(Thinking at the music – Just make it stop.)

Predict: Zap storm, many hours sleep, and/or migraine.

Ipod and coat on trolley home.

12:06am (on the trolley)

It’s like freefalling backwards into a Wonderland of memories.

Exhausted but don’t want to blink.
Feeling hot.
Want to take all my clothes off.
Neck clicking again – veins on right

12:15am

Want to walk & walk & walk.
And DANCE.

Safe – I don’t feel safe. And I don’t know what’s going on. I wish I was with someone. I just want to feel safe.

12:35am

Tired
Sad
Pain over right eye
Want to sit in warm water to relax
Lower back tight
So tired.

12:45am

Mini-face storm
Eyes squeeze shut

12:49am

Exhausted

12:53am

Freezing cold – shivering
Trembling
Nose running

1:01am

Rocking back and forth
Cookie & Milk
Eyes closed lightly – too much light

10-23-10              1:31pm

Just woke up. Still feel zoned out and tired but my head doesn’t hurt.

9:48pm

Residual effects:

Some movements – mostly facial, some large jerks
Trouble swallowing
Olfactory hallucinations
Confusion
Cravings
Tired
Headache is back

I went shopping/returning at the mall today. I feel much better than yesterday but I’m still not feeling normal or baseline again.

(sigh) What a Friday night.

© Michelle Routhieaux 2010

I Miss Math

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10-19-10              8:34pm

I’m sitting at M’s listening to the rain. She’s taking a math test online. We’re cleaning her room.

I miss math so much. I miss the certainty. I miss knowing there is usually an answer. I miss feeling smart. And I miss Terrie.

Up until close to the end, math was always my friend. I got an award in 5th grade for being the only student who ever asked for “more math please.” When life is crazy and nothing makes sense and I need a moderately stressful yet intriguing and rewarding distraction, math is always there.

It is math that makes me believe I can be better than this. That maybe I could be a John Nash – someone who conquers their illness and actually succeeds. I like that feeling. I miss it. And I miss the way it feels to work that part of my brain – to strategize and remember.

Math does not care what I look like or who I am. It is not missing punctuation. At the right level it’s not confusing. It just makes sense. Plain and simple. When life can’t, math can. I miss math.

-M

© Michelle Routhieaux 2010

Cold Sweat

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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

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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.

(crying)

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.

-M

© Michelle Routhieaux 2010

Rediscovery

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9-25-10                4am-ish

I found this today in a drawer I was cleaning out. I don’t miss the fear of feeling that way but I do miss the fascination of those sensations. I was working as a job coach at the time for adults with developmental disabilities.

4-17-16                9:13pm

I’m feeling really weird today. I’m very anxious and nauseous and I’m disoriented too. Yesterday I felt like I was going to collapse and today too. Mark said to check out the dance and theater programs at UI, that they’re amazing. I was one step ahead of him. He said he’ll only approve of my trip if I have time on the books but can he do that? It’s for a neuropsych eval. I have a brain disorder (and a booger I can’t get out of my nose). I’ll ask Vickie – not that I think she’ll know.

Today is one of those days I don’t really feel safe and probably shouldn’t be supervising consumers, especially in the community. My ears are invisible, my brain is morphing like a lava lamp and light like Model Magic, and my teeth feel like they could fall out of my head just like dentures. My eyes are floating, suspended in their sockets and tingling.

The NAMI Walk and being with D- were big triggers for me. I’ve been hiding my mental illness for so long and denying that it’s there. It is. D’s having a terrible relapse. I feel sad and concerned, for both of us.

The driver’s playing classical music and I’m beginning to dissociate. Yawning but extremely tense then a burst of energy and lightheadedness…..

And everything’s fine.
Yesterday was Easter.
It’s supposed to rain today… —

© Michelle Routhieaux 2006

Illness. It’s bigger than the horses.

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9-19-10                2:45am

Illness. It’s bigger than the horses. I’ve been hearing “Wild Horses.” The chorus plays over and over in my head. “Wild horses, couldn’t drag me away. Wild horses, couldn’t drag me away.” Maybe not, but illness is bigger than the horses.

Today I am sick. It’s almost 3am and I’ve been awake altogether for less than 4 hours. I really wanted to go out tonight but I couldn’t. And it made me so angry. Conscious enough to know I can’t go but sick enough to be able to do nothing about it. “For All We Know” lulled me back to sleep and woke me up.

For all we know, right? It’s why I went out with Matthew this week and it’s why I see so much music. And why I’m terrified. Because I know. I am acutely aware of how precious life is. And God keeps reminding me that it’s not in my control.

I should have known a sick day was coming. I’m kinda glad I didn’t. I had fun. I went to hear music 3 days in a row this week. Last night I was riddled with zaps and freezing cold and anxious and feel asleep on the trolley, and in the car, and while waiting for food. And today I just couldn’t wake up. Really bad headache. Extreme exhaustion. And anger at the situation.

Wild horses couldn’t drag me away from the music. But illness is bigger than the horses. This invisible force I have little control of. I feel like crying but I’m just too tired.

Headache’s coming back. I’m writing by flashlight in my dark room.

(breathing…)

I’m grateful for Matthew and my teddy bear.

Love,

Michelle

© Michelle Routhieaux 2010

Disappear

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9-17-10                3:09am

Sometimes I just want to disappear, like now. To just walk away and go some place new, to start over. Core belief tonight – I’m not wanted. I don’t know why. Nothing particularly bad happened. I listened to great music with a good friend, watched “House” and pet my cat.

There’s something that’s been bothering me that I can’t really talk about here. It eats me, makes me tingle inside.

(crying)

I am so sad. And so scared. And so, alone. And I’m so tired of feeling this way. If I’m right and I really am sick, what’s gonna happen when I can’t go out in search of happiness anymore? If I feel this way now and I’m out every day doing things I enjoy and can’t stand to be alone or in the house, what happens when that’s gone? Huh? I’m not disturbingly ill now and I hardly see anyone.

It was something I read on FB, a trigger tonight. An answer to something I’d been wondering, a question I didn’t ask.

Just listened to this. It’s amazing. “Wild Horses” by Natasha Bedingfield. Not what I was looking for, but I’m very glad to find it. I feel like I need to go out in the wilderness for awhile, to have it out with God and be alone and try to figure this out. Talk to myself, and scream, and cry, and be quiet. With no computer. Just my journal and a phone. I’d rather be alone by myself than just lonely. And when I have sufficiently reconciled with what is happening to me, maybe I can come back to my life. Or maybe I’ll break that family tradition and just stay on the mountain. Might be easier that way.

-Michelle

Dazed, Dazzled & Confused

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9-14-10                3:45am

I’m so tired. I miss –. It’s only been 3 days since I saw her but it feels like forever. I haven’t been thinking about my last journal entry (not posted here). I just miss her hug.

I finished printing all of my blog posts tonight. Looking at the stack makes me feel accomplished. (I hear that guy whistling outside again. At least I think I know who it is.) I started blogging February 21st and the notebook is almost full.

Hard copy of my blog


It’s just a handful of the writing I’ve done. It’s interesting to see it all in one place.

(sigh) I feel so tired. I know it’s almost 4am but the amount of time I sleep doesn’t affect my level of tiredness.

I hosted a lecture tonight at my group. Stupid damn Monday night football screwed it up. The last 3 lectures I averaged 60 people. Tonight? 20. Grrr…

I need someone to talk to. It gets lonely in my quiet kitchen at 2am when I’m filled with thoughts and anxious energy and have no place to put them, no reason to say. I keep hearing “Silent All These Years” by Tori Amos.

There is something about speech that is soothing. When the words are inside me they stir in my heart. They make my soul tremble and throat ache. Just the vibration of sound helps ease the tension. But where do you put the sound at 4 in the morning when everyone’s asleep? Reading my writing out loud can be such a release. (street sweeper)

There is so much to say and yet I feel quiet… My eyes water, my neck twitches. Dogs bark and the cars fly by. The fridge is noisy. I think Mom’s asleep. I’m curled up in the big chair writing. It was my dad’s chair, although he never used it. I miss him. I wish I could talk to him now and that he could answer back. I need his wisdom. I need his experience.

(break to hear music in my head)

I can’t, I can’t.
I can’t right now.
Colors, shapes & music.
I feel confused now.
Touch. Touch.
Let me sort something.
Dazed, Dazzled & Confused
He ordered the test.
Just sing. Just sing.
Please sing.
Please sing. Just don’t stop singing.
Thoughts Go away, go away.
Go away.

-M

© Michelle Routhieaux 2010

The Forever Trap

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9-9-10                  11:40pm

I was talking to a friend tonight about her new boyfriend and she was all stressed that (in a nutshell) they’re not forever material, that everything’s not quite right. I thought about it. I do it all the time. I did it tonight. I talked to a guy I kind of like and, while it may have appeared to be a conversation, it was more like math – a puzzle or equation. Does he fit? Is he what I need? Are our lives compatible? In reality it doesn’t matter. I can’t control forever. All I have is tonight and even that’s out of my hands. But I always come back to that. The forever trap.

Sugarland has a song “Settlin’” that says “Mr. Right Now not Mr. Forever.” While I do want a Mr. Forever, I want a Mr. Right Now. Because right now IS forever and it’s gone in a blink.

Right now I am happy, and cold.
Right now my thumb hurts from texting.
Right now I’m not worried about my problems. I’m just riding the trolley one-mindfully.
Right now.
I like right now.

© Michelle Routhieaux 2010

They call me Ms. Marshmallow

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9-8-10                  11:32am

There were times in my life when I would have considered an 18 minute yoga video for beginners lame. However, today I approached it with VCR remote in hand and cursing at the tv. Are you supposed to curse at a yoga video? Seems rather un-zen. Anyway, I made it through in about an hour, quite ungracefully, and rather perturbed. If I’m going to go to the effort to get INTO a yoga pose I’d like to stay there for more than 5 seconds (I counted – hence the pause button). You’d think I hadn’t taken a step in 3 years. Yes, Dr. T. I’m a marshmallow. Ya happy?

I woke up this morning at 7:33 thanks to forgetting to take my night meds. I don’t even know what my meds do anymore. I’m just so tired. So I decided to stay up, even though I’d only slept 4 hours. Why not? Well, we’ll get to that later. I’ve been experiencing this thing where I feel very agitated with an extreme desire to move with zero energy or ability to do so, often when I wake up but other times too. It’s like torture. Like being trapped in your own body. With the blanket on I’m too hot, with it off I’m freezing. There are small bursts of energy when I finally flip myself over like a pancake or roll to one side. Then I lay there not moving, wondering why. It’s like all contact from my brain to one or more of my limbs has completely gone away. Sometimes my voice goes on hiatus too. The thoughts are there, but nobody’s answering.

So I finally found the energy and wherewithal to get up and decided to start my journey to non-marshmallowness by attempting to walk to the donut shop. Dr. T had suggested walking somewhere for coffee but I don’t drink coffee, and I like donuts, and I happened to remember there’s a shop up the street. Ooh, I just remembered 7-11’s closer. Might start with that. But I needed to take a shower. So I took a shower and then couldn’t breathe, so out went the donut shop. So I settled on sitting for awhile and then had a bagel and watched Nick, Jr. I was cool with traveling with Dora through the desert to deliver Cowboy cookies to a blue cow named Benny playing harmonica in a rocking chair, but traveling through space to return Inky, Plinky, Blinky, Dinky and Al to the purple planet is a bit much. What do people DO during the day who don’t work or go to school? I sleep until my life starts around three every day. Today I played with Zoe, whom I might add is fucking crazy.

I eventually decided to try one of my many exercise videos that I’ve owned forever and never use. Instead of Richard Simmons that I know I like I figured I’d start with something simple – AM Yoga for Beginners. Grrrr. I even got out my pink yoga mat. I made it through, huffing and puffing and cursing and pausing and cursing some more. It’s supposed to make you feel energized. Energized is not quite the word I would put on it. I feel mentally alert, but I’m physically exhausted, and shaking, and my eyes are watering, and I can’t stop yawning. Not sure what about that is energized.

So now it’s 11:46am. I exercised on purpose today. The result – urge to watch QVC and say, “That shit is whack, man.” Not sure what they’re putting in that AM Yoga video. I’ve been up for 4 hours. In my normal day it would be dinnertime now and I would be off to a group or to see music or something active with people. But no, it’s not even noon. What, the fuck. Seeing my therapist at 2pm. Hoping to be awake for that. I need a nap…

(sigh) 11:52 and it decides to kick in? NOW I’m agitated? It said ENERGIZED not AGITATED. (zap) Breathe… I need structure and people.

-Michelle

© Michelle Routhieaux 2010

What to Contemplate

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9-7-10                  8:10pm

Last week I was contemplating opening a dance studio. This weekend I was contemplating how to stay conscious. I just went to a lecture on motivation and now I’m contemplating contemplating.

Change, is inevitable. Change is hard for me.

I’m looking at a lot of change and stress, good and bad. Here’s the layout. Work at my group is slow but about to pick up. Gospel choir brings me great joy, and great responsibility. A storm of planning and fundraising awaits. No Broadway San Diego events this week. Those are my work-like activities.

At home, mom is spiraling. She’s depressed and irritable and she doesn’t hear half the things I say anymore. She’s constantly yelling at the cat. The tension really gets to me. And she’s gonna have another surgery on her arm soon. I don’t know when. I’m still paying on the last one. I am significantly less healthy this time around and I barely made the last one.

I saw Dr. Tecca today after I had my mom page him last night. He couldn’t find anything wrong (as usual), other than slightly high blood pressure and a low fever. He doesn’t deny my illness this weekend. His verdict? “You are… a marshmallow.” He says I’m too weak and fragile (like a marshmallow) and that I should exercise.

The question for me is how much? He said an hour at least 3 days a week. By why, you ask, did I page and see him today? Because after attending a baseball game Saturday (attending NOT playing) I was barely conscious but for an hour here and there ‘til today at noon (Tuesday). Severe weakness that nothing helped. I know there’s something between nothing and an hour, but what is it? This guess-and-check method is costly.

I finally talked to Dr. Licht and he’ll order one of the two ataxia panels I asked for – either the complete or the autosomal dominant. Mom is pissed that I told him there’s no definitive diagnosis of HD. But at this point there isn’t. She doesn’t think it’s important. She yelled, “IT IS WHAT IT IS!” Ya, but what is it? I can’t write that on an insurance form and a doctor can’t treat “it.” It’s not fair for her to try and block me from finding what “it” is. It doesn’t mean she did anything wrong. But someone did. It’s not her body. “It” is killing me.

And I’m trying to come to terms with that and I don’t know how. So yes, I am a marshmallow. I am fragile and weak. But I’m here. What of this do I contemplate? It’s too much to handle. Thankfully, dissociation and memory problems help with that. But what do you do?

Pray. “Paciencia y fe.” Thank you, Broadway.

© Michelle Routhieaux 2010

How’s the weather?

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9-4-10                  4:09am

I discovered a few weeks ago that when my friend Sacha sings it changes the weather. My perception of the world is rarely congruous with reality and the weather in my head is often much different. Since then I’ve found it helpful to ask myself how the weather is to give me a better picture of what I’m feeling. I asked myself tonight. This was the answer, some random commentary, and more answer.

9-3-10                  7:44pm

How’s the weather?

It’s a bitterly cold night. I’m standing in the center of a bridge over the ocean looking out into the distance. The sky is perfectly clear, filled with stars, but I’m not looking… I stand there for awhile just watching. Then I take a step back, turn to the left, and continue to walk.

—

It’s very loud in here tonight. I feel like the world is surrounding me. I displace it as I move, but I’m not a part of it.

The woman (where she was sitting) I’m not a fan of. She’s shallow and always appears a bit tipsy. And her hair is WAY too long for her age… S & J are fighting. At least the music is good.

—

The woman laughs like a pellet gun.

10:53pm

Sacha has green and blue waterfalls around her, moss and lily pads. “Cry Me a River.” Cool, dark, misty caves. Streams of light shining through the very tall trees.

“Amor Impossible” is warm orange and yellow with sand blowing and white chiffon.

“My Way” is purple.

© Michelle Routhieaux 2010

Wish

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8-30-10                2:34am

Dear Magical Wish-granting Fairy in the Sky,

I wish for a clogging studio, please. The one I see in my head. It’s one of those dream/wishes that’s not really possible but that I’ve been dreaming about since I was little. I’ve yet to find a genie or a shooting star or a sugar daddy or to find hidden treasure. I thought maybe you could help me out. It’s worth asking, right? So, please, if you could. Help a sister out. Thanks.

Michelle