Tag Archives: illness

Even dark clouds pass

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3/8/13     7:31 amP1170855

I just woke up to pouring rain. It’s my birthday. I take this as a sign God is washing away my pain. From the comfort of my bed I see blue sky under the dark dark clouds and it’s taking over the sky. It never left. It was just temporarily covered.

I am warm, comfy in bed propped up against three pillows in a soft shirt my friend gave me and my Cookie Monster pants. Bright orange and pink socks on matching palm tree sheets. God is good.

I got out of the hospital on the 15th. Nineteen days. The most painful experience of my life, to my conjecture. And probably the best. 19 days. I don’t want to forget those days.

I went in for a severe mixed episode, rapid cycling from suicidal & lethargic to euphoric or agitated energy about every 20 minutes. I had two doctors because Dr. N was on vacation the first week. Dr. H was great. She put me on a new med that calmed the cycling but it caused such bad muscle problems that I could barely walk. I had dystonia in my legs, stomach & back. But my mood was great. At first. Until the pain wore on me and I couldn’t take it anymore.

When my doctor came back (sunshine) we stopped all my meds in 2 days to start over, find a baseline. We’d reached a deadlock. Ah, the pain. We expected either my body would get better and my mind would get better or my body would get better and my mind would freak out and we’d fix it.

Instead, my mind did much better than expected and my body flipped out. (remembering) Pain. Attacks of being stabbed in the neck with burning knitting needles that would break like thunder into muscle spasms all over my body. Out of control blood pressure. Random spikes in bp and pulse. The muscle spasms at night hurt so bad I couldn’t move or talk. They became constant. My face twitched so bad I couldn’t see straight, made me dizzy. My fingers were constantly tingling & freezing. My feet tingled. The roof of my mouth tingled. I wasn’t sleeping or eating. I became frail, which was pleasing to me but angered my doctor. I hid under the table from the voice in my head, heard an unfamiliar one for the first in a long time. My hands would stop working & turn cold and purple. My doctor didn’t know what to do.

God sent me angels. I could see and feel them with me. He spoke to me. He came as a hummingbird. All around me was God and I was never alone. I cried out to Him to take me home. I was so scared but He was not. He told me, through the words of my mouth and a cloud, “Don’t take your eyes off me. It is written,” quite firmly. I knew the storm was coming. I didn’t see the glory. Before each spike in pain I would hear God’s song. He gave me music. Calming songs would start before and play through and my angels were with me. I was never alone. Heart racing, shaking, body writhing, unable to breathe. They would ask if I was nervous, having a panic attack. No. I felt calm.

Many days of this wore on me. With no psych meds my mood was all over. I wanted to die. We started adding back in meds, building a new ground. The staff were amazing & my fellow patients priceless. Friends. Something finally clicked and I was ready to come home.

Which brings us to now – 3 weeks later. It is my birthday and I feel good. I can’t remember the last birthday I felt good or even semi-ok. Last year I screamed and cried and refused to get out of the car and slept most of the day, reclused. Today I feel good. It’s morning and I am awake. The birds are chirping. My kitty is watching. The clouds part and I feel JOY. Praise God!

This whole experience has drawn me closer to Him. I’m listening. I’m paying attention. I joined a church choir and am reading “The Story.” I don’t feel as scared. I’m taking care of my body, trying to lose some weight. I even want to decorate my room. Goals seem possible.

A different life seems possible too. I don’t feel trapped. I get to choose what to do and what not to. I can move in any direction. That said, I am still exhausted. Trying on shoes last night knocked me out. I am exhausted but not weary. I see the light. Praise God.

May 27 be the best year yet.
My goal is to LIVE.
My theme: Break the Rules.

Even dark clouds pass.

© Michelle Routhieaux 2013

Life Update

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12/2/12     9:54pm

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.
Hours…
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.

(stare)

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.
My eyes.

(stare)

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

Waking up

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10/1/12     12:20am

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’m sleepy.

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 want to fall in

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7-2-12     8:04pm

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

Cheetos in a teacup

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3-30-12     4:23am

Sometimes I wonder why I’m still awake at four o’clock in the morning, like tonight as I sit here eating my Cheetos out of a teacup. Chip bags are just annoying. And then something happens. Something always happens. Right as I started to think about heading for bed I got a crisis FB message. Now I’m chatting with said friend.

The conversation reminded me of something my doctor told me a few weeks ago. He said he doesn’t believe that I’m going to get better. I let the comment slide. Had I been feeling particularly awful it could’ve pushed me over the edge. But I’m not. It was actually helpful. After feeling upset for awhile, I decided that if I’m not going to get better I might as well have fun where I’m at. I don’t have to like it, but I don’t have to feel tortured by not healing. I spend an enormous amount of time and energy trying to figure out what’s wrong with me and how to fix it. It’s exhausting. It goes in waves. Energy, answer-seeking, exhaustion, loss of hope, lull, happy, hopeless, desperate, repeat. I’m not abandoning the cycle completely, but right now I’m not searching. I’m coping. My goal is to start LIVING.

Wow. What a concept. I don’t really understand this living thing. It’s always been about getting better and doing worse and fending off death. Or hastening death. But never about life… (ponder as I continue my crisis chat)

I never thought I’d live to be this old. 26. People say it’s a small number, that I’m young. I don’t see it that way. When I was little my dad had Huntington’s Disease. It’s a nasty illness that basically eats your brain and you die. And there was a good chance that I had it too. It wasn’t an option to consider the future. I still don’t even really understand what that means. So it baffles me when I realize I’m 26. Half the time (really more) I don’t remember how old I am and people think I’m either dramatically older or younger, depending on the day.

I’m not sure I want to embrace the concepts of life or future. It’s almost safer to just have now. If I expect to live ’til I’m 40 and then become terminally ill at 30, I’m gonna be pissed. But if I only expected to live ’til yesterday, it’s a prize. You know? They say life’s a bitch, but it’s much quieter.

Anyway, there’s always a reason that pops up when I think there’s no reason. Tonight it was a good one. I just wish my teacup of Cheetos was bottomless. DAMN! I just remembered I wanted to try eating them with chopsticks. Do I even own chopsticks? I don’t know.

It’s 4:45am and I can feel the wave of energy come over me. I would call it psychomotor agitation but it’s not unpleasant, more like a hyper puppy waiting to play. I still follow the sunrise rule but it’s dark out. I guess my internal sunrise comes sooner. That or I’m sensitive to Cheetos and crisis. I feel like a teenage girl about to meet Justin Beiber. Seriously. Only I’m alone in my kitchen talking to my invisible computer friends. Maybe one of them’s Justin Beiber. Could be. You never know. He could be randomly googling the Panda Express kids meal, which is oddly the number one thing people google to get to this blog. Who knew? Eat a kids meal, get new readers. Works for me. All for the low price of $4.95. Sweet. And sour. ;)

Gosh I’m bored. This darkness sunrise makes my thoughts race. I need to bounce up and down and yell and shout and sing and MOVE. AHHHHHHHHHHHH! (deep breath) I should take my night meds.

I’m 26. I found a Subway today that still carries regular mayonnaise. Thank the good Lord. And the bad one too. I’ve yet to learn how to be a kid but it’s on my to do list. Workin’ on it. I should take my night meds. Stream of consciousness. Does a body good… So does Oscar the Grouch, and drugs, and Cheetos in a teacup. Here’s to hoping my friend lives.

Love, Michelle

© Michelle Routhieaux 2012

I am the yellow clock – unabridged

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6-5-11     11:12pm

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

I am the yellow clock

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6-5-11     11:12pm

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.

© Michelle Routhieaux 2011

Shoutout to the Jedi

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12-25-10     11:04pm

I’m so grateful for Dr. Collan. My symptoms have improved drastically since seeing him. For those of you who know me, you’ll understand how much that means.

  • I’m not as tired all the time.
  • Not sleeping as much
  • Much less agitated
  • Less pain
  • Fewer headaches & migraines
  • Very few zaps/tics and zap storms
  • Less nausea and vomiting
  • Dizziness is rare
  • No tingling
  • Few tremors
  • Feel calmer
  • Less mood swings

Since I’m not freaking out about my body I don’t want to die. I’m not cured but I feel human again. I climbed stairs at church without stopping and without pain. I walked to 7-11 and lifted the turkey today.

I still have symptoms but they are less intense. Mostly cognitive and psych stuff. I feel mostly calm and pleasantly out of touch with reality. I need structure and can’t handle being rushed, but I get things done in my own time.

I ran across Dr. Collan quite by chance. (Dr. Collan Koeppen – aka Upper Cervical Jedi) Met him in a free check at a walk. I won the most fucked-up patient of the day award. I like that. ;) I bought a discount visit certificate and figured if no one else can help this couldn’t hurt. I never go by those booths and I don’t have lots of money to pay, but I’m so glad I stopped at this one. Glad I took a chance and believed.

Dr. Collan is kind and gentle, quite knowledgeable and rather funny too. Check out his website and try him out if your body ails you or you need a great chiropractor or you know someone who does. Tell him Michelle sent you. ;) Six weeks ago my body was falling apart and I was freaking out and wanted to die. My neurologist actually gave up on me. He said, “This is where the science ends.” Today I celebrated Christmas with my family, cooked and rode in the car for awhile and I didn’t freak out AND I wasn’t in pain – except when I hit my elbow on the door. ;) Miracle-worker I don’t know. But he’s damn good, that’s for sure.

Thanks, Dr. Collan. You’ve made my life worth living. I’m so thankful for you.

1-5-11     3:03am

Update – Saw my primary doctor today. He was both impressed and flabbergasted by the improvements. Lol. Said he’ll have to remember chiropractic really does work and remember to refer people. I certainly hope so.

© Michelle Routhieaux 2010

The Sick Cycle

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12-1-10     1:29pm

I am so cranky today. I want to be outside but I’m supposed to watch the soup so it doesn’t boil over. Would it not make more sense to just put less soup in the pot? (SIGH)

I feel bitter today. I’m a few days into a sick cycle. I will feel confused and pissy for several days, have major mood swings and be more tired than I should be. I will then have unexplained agitation with lots of movement & bad headaches, and small windows of euphoria. I will then be extremely tired for several days and then have a somewhat normal productive few days or week before it starts again. I will think I’m losing my mind and have urges to die. I will hate everyone and everything and not know why. I will feel desperately alone but not want to be touched or around people. I will be overwhelmed. Life will be more than I can handle. And I will be exhausted.

© 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

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

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

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

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

Comfort. Bliss. Pain. (clogging)

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This is part blog, part letter.

8-29-10                1:52am

Comfort. Bliss. Pain. (clogging)

There is no feeling I know that tops twirling on a dance floor while clogging with people I love. There are people here this weekend that I’ve known forever and love dearly, whom I never see. They are my family. I just want to be near them. I’ve not much to say. I just want to be close. There’s something special about not having to say anything…

(fight with Mom)

Breathing. Tears. I don’t want to leave this place. I don’t want to go home tomorrow. Not because nothing bad ever happens here but because with these people I know it will be okay. That I will be okay. And I’m not.

I just watched Boston Legal. I went to a gathering last night of friends and it felt so good to have fun, to laugh and feel happy. And to be physically close to people. There are hugs here that make me feel loved…

I don’t see a lot of people like that. And sitting next to one makes me happy and sad. Happy and grateful for the moment and sad that it’s ending. I long to be close to someone, to be held and comforted and loved. To have someone to curl up with, a hand to hold. Instead I have a pillow at the end of a hotel hallway, a purple pen and a journal. And an angry mom sulking in a hotel room over me not putting my pajamas on. What the fuck? Yeah, I’m bitter. (deep breath…) Crying.

Your life is fundamentally at odds with the world. Therefore nature rejects you. (Failure to Launch)

—

This weekend has not been about illness or drama. My illness has affected my dancing but no one has asked me about it. No one’s asked much of anything. It’s been nice to have a break but it feels like this huge secret. I have this big clogging family and they’d be supportive if they knew (I imagine). But they don’t…

I cried at Lynnda’s slideshow tonight not because I knew her well but because I think of that stuff. I wonder what will happen when I die, who will notice, what the service will be like. I cried for me. In case you’re wondering, when I die you should dance. And if there’s a slideshow, please splice the music smoothly and don’t use “I Will Remember You.”

… I don’t have a name. I just want to dance, to feel that free feeling and the warmness of being close to you. You bring me comfort. I don’t know why. You just do. It makes my heart tingle. And for that I am grateful. Thank you.

(deeeep breath) I just wanna dance.

-M

Tick Tick Tick

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8-22-10                2:56am

I was listening to Sacha talk to this guy on Friday about his son, a singer who’s not living up to his potential. And there was something she said that sticks with me. It’s a very small and powerful phrase. “Tick tick tick.” He’s 24 and time’s a wastin’. There’s not much left.

It has a different meaning for me, but it’s generally the same.

Tick tick tick
Your life is almost over
Tick tick tick
Before you melt away
Should you stay one more day
What will you be?
Will you be free?
Will your dreams come true or will you watch them melt away, today?

Tick tick tick
I don’t know what time it is
Tick tick
Or what day, or the year
Tick
I don’t care.
I just want to be happy.
Tick
How to be happy … what was I saying?

Tick tick
I know the time is running
Tick tick tick
Faster than I can see
Tick tick tick
And soon I will catch up,
Or maybe it will catch me.
But hopefully when we meet we’ll have some good stories to tell,
Of dancing (tick) and singing (tick) and feeling mighty swell.
Cuz when we meet up (tick) I won’t be walking away.
Tick tick tick.
Just give me one more day.

I know my clock is ticking, in every meaning of the phrase. It makes me quiet and fills my face with vapor. Tick tick. (close my eyes and sigh…) I won’t be walking away.

(thought continued in So Let’s Play)

© Michelle Routhieaux 2010

I can’t remember, a test & permission

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8-22-10                1:35am

I can’t remember what I did for my birthday this year. I remember the night before at Bing Crosby’s and the black dress. I remember at Ralphs not letting them buy me cupcakes (I don’t like Ralphs’ cupcakes.) I remember opening the four cards Mom got me and the bouquet of flowers, but I have no idea what I did that day. Maybe I was sick. I know there was a plan and that it didn’t get followed… (flash) Dinner at Rubio’s. Yes. That wasn’t the plan though. I don’t even remember if I had a party sometime that week. This concerns me as I think it’s something I SHOULD remember. Don’t you?

(break to watch the rest of “Blue Collar Comedy Tour Rides Again”)

I got out my ring last night that I bought when I tested negative for HD. I was thinking about it because last week Sacha mentioned wanting to buy herself an engagement ring and the ring I have is just that. I’d forgotten how beautiful it is. Sadly, after a few hours it hurt my finger so bad that I took it off. Apparently my fingers are fatter now. But I wondered what my reward to myself will be when I get the results of this upcoming test.

I’ve been waiting on a diagnosis for years now. And the list I was expecting from a friend is not coming so I called my neurologist Friday night on a break and told him which test I want him to order. There is one dx I’m looking at in particular. It’s called DRPLA. Good luck Googling it and finding anything useful. This is the best thing I found http://www.ataxia.org.uk/data/files/drpla.pdf. It seems to fit and I’m hoping it’s what I have – not because I want it but because I want an answer. I want a name, some validation. You know? I want to be able to say, “See, I’m not crazy. I DO have an illness and it has a name.” I’d have an answer for, “Why are you twitching?” I’d have some proof that’s it’s not, in fact, a conversion disorder but it is in my head. In my BRAIN, not my thoughts. In my fantasy today I would get this wonderful/awful news and have a Celebrate Life party. The news itself would be a relief. This part of the search would be over. However, if it’s not what I have, it would be devastating… I want to have that party. I want to know what’s going on.

I talked about it with my therapist this week. It’s great having a neurology professor as a therapist. I asked him if he had any tips on dealing with cognitive impairments and he said if it is cell death in that region of the brain the best thing I can do is dance. God is good, isn’t he? (big smile) I also bought a ping pong paddle and balls. It’s all part of the story, revealed one page at a time.

I’m so exhausted. I really should sleep now. I’m going to a piano thing tomorrow and have to be on the trolley in 8 hours. Yuck. Hopefully it’s worth it. Thanks for listening.

Love,

Michelle

© Michelle Routhieaux 2010

It’s the Music… (and other stuff)

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6-10-10                 2:35am

Sorry I haven’t been writing. I just haven’t had the energy. I had a good week and now it’s time to work again, on illness that is, or with it. I’ve been inundated with symptoms. Another day of no moving or talking, constant exhaustion, weakness. In the past few days the large movements have come back. Today I was a buzz of zaps and weakness and sticking my tongue out all the time. In between I managed to do things. I went to therapy, then to Quizno’s (couldn’t breathe), then to the beach. I lasted about 20 minutes and climbed the stairs. Quite a feat. Went to the bay to see the big ships with Mom. I walked all over Target and made it almost to the checkout at Albertson’s before almost collapsing. That was nice. Zapping all over. Crashed in the car. Some more movements tonight and now I’m okay again, minus the frequent unwarranted blinking, grimacing and sticking out my tongue. I wrote on FB tonight:

In between God’s version of invisible lightning dances and frog imitations, today I saw Jim, went to the beach, looked at that big old ship that’s here from Portugal and went to Target and Albertson’s. Long but very good day. Tomorrow’s Mom’s birthday. Hopefully it will go well.

My primary goal, after staying alive, right now is to have fun. Followed by being with the people I love and staying away from the people who bug me. On any given day, just one is enough. But two or more is great. I told Jim today it was frustrating thinking I was going to die Saturday night (due to fucked up vital signs and the inability to breathe) because I actually like my life right now. He said he’d never heard me say that before. That was powerful. I’ve been with him for a year. And I don’t think I’ve felt like this before. I like my life when I’m doing things I love. I don’t WANT to die right now. And that’s a good thing.

I said that I’m trying to make the best of it, of being sick. I don’t know what it is and even if I did or when I do there’s probably not much I can do about it. He said, “It doesn’t sound like there is a best.” But he’s wrong. There is. It’s the music.

My mom doesn’t understand why I go out when I can barely walk or breathe. I keep trying to explain it to her. I don’t need more sleep. I could be sick anywhere. It doesn’t matter if it’s here at home or at a restaurant or concert. But I’m so much happier when I’m sick to live music than when I’m just sick at home. The music is healing. Just for a moment, nothing else matters. I can just be free. I can’t dance right now. But I can still hear the music. And trust me, I need it.

I’ve been working on this project for a few days for a friend. I’ll post all about it when I’m done. It’s meant to provide comfort, but it’s providing comfort to me. We talked about codependence today and giving versus receiving. Jim asked if the drama is really worth it. And right now, I think it is. Cuz if I can’t have what it is that I need right now, having something is better than nothing. My friend was telling me about the 5 Love Languages last week and I took the quiz on the website. In descending order, mine are: Quality Time, Words of Affirmation, Physical Touch, Receiving Gifts, and Acts of Service. I think it’s kind of a pecking order because if I can’t get quality time or words or touch I give gifts or do service. I need to give. But I need to receive as well.

I was listening to Celine Dion and crying last night with the main part of the project I’m working on. There is this song of hers that always gets me. “I Want You to Need Me.”  (whooooooooooo…) Just listened again. Makes it hard to breathe. Sometimes I just want to scream, “What do you want from me?! Please, whatever it is, just tell me. Let me give you something or do something for you so you’ll spend time with me.” But I’ve realized the people I want to need me, they don’t want anything from me. There is nothing I can give to get the time that I need. And they don’t have that time to give. I’m just along for the ride. But until I find or get something, it’s a ride. The music. It helps.

M- posted today “Make a Wish!” and I held my breath in anticipation and excitement, then paused. What should I wish? I was torn between two things – my friends in pain being happy or my health. I wondered if not putting them first made me selfish or if I could find a second thing to wish on, but I settled for wishing for them first AND me. I’m getting there.

Tomorrow is Mom’s birthday. The gift I got her requires energy, which I don’t have, so I hope she okay for postponing it. Thanks for reading and sharing your time.

-Michelle

PS – I attempted to read a book today. Remind me not to do that again for awhile.

© Michelle Routhieaux 2010

I Don’t Want to Die

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6-6-10                   2:26am

Tonight confuses me. I think I’m okay with dying but when I think it’s happening I’m scared again. Why? (sigh)

I’m pretty sure I’m not dying, but only cuz I’ve thought this many times and I’m not dead yet. But tonight I’m not breathing much and I can’t make myself breathe any more. I feel very weak. My blood pressure is higher than I’ve ever seen it and my pulse quite low. It’s scary. I don’t like feeling scared.

I paged my doctor, my primary. I woke him up. Poor guy sounded like, “WHY ME?!” He gave me his standard 2am answer. Take a Xanax and go to sleep, call him in the morning if I’m not better and good luck. I don’t need luck. I need you to tell me what the fuck is WRONG WITH ME!

I don’t want to go to sleep because I don’t want to not wake up. Is that so irrational? I had a great day today. My life is just becoming something I actually like. It’s not perfect, but there are days that I’m happy. Moments like tonight when everything’s right. When my face hurts from smiling. A few months ago I didn’t have that. I didn’t get it. I actually WANT to live now. You know?

Xanax. Please pray for me. I feel sad.

© Michelle Routhieaux 2010