What to Contemplate

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

I Don’t Want to Die

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

Thank God for Dr. N

5-17-10                 1pm

I appreciate my doctor today. He’s awesome. He may not know what’s wrong with me but he certainly does care.

I left him a copy of “I don’t know” is NOT acceptable at the hospital on Friday. I knew it was him calling this morning super early but I was too tired to pick up the phone. When he called again I knew I had to. I was so tired I was having trouble understanding what he said but the parts I got make me smile. He said he can see I’m very angry and that I have reason to be. He said, “It’s not usually my practice to make stuff up and lie to people.” Lol. He said he’s not trained in neurology and therefore can’t help me with that but that he’ll do everything he can to help me with the psych stuff and that I can call him any time. (smile) I just want to hug him!

I hate phone calls when I’m sleeping but this one was good. :) Thank God for Dr. N.

©Michelle Routhieaux 2010

“I don’t know” is NOT acceptable

5-14-10                 6:03pm

“I don’t know” is not an acceptable answer from a doctor. It might be if it was followed by a referral to someone who DOES know, but it’s not. I am going insane. My neurologist refuses to call me back. I just spoke to my psychiatrist on the phone. He said he has no idea what’s going on with me or how to help. He said it looks like a little bit of everything and he doesn’t know what to do with it. He also said that every doctor who sees it is equally as confused and therefore ignores me or refuses to return my calls. This is unacceptable!

I am so fucking tired of “I don’t know.” He told me today his observation is that I do well when I’m moderately busy and terrible if I’m overscheduled or bored. Yes, that’s true. But he also said that he thinks since I have little to do now that I should do more and distract myself, that having extra time is making me hyper-aware of my physical symptoms. (pause) Really? Cuz when you’re head hurts so bad you can’t stop crying or throwing up or half of your body is tied up in twitches and zaps or you can’t think straight, I’m pretty sure YOU are going to notice it whether you’re busy or not.

The hospital is the place I go when I don’t feel safe. Times when feelings like now don’t pass. But this is the guy who treats me at the hospital. And every damn person’s answer is “I don’t know.” How am I supposed to accept this? The song on the radio keeps repeating, “I’m fallin’ to pieces.” Yes. What do you do once you’re IN pieces already?

“I don’t know” or silence are not acceptable answers. This is a crisis. This is NOT a drill. I guess I’m the only one who hears the alarm.

© Michelle Routhieaux 2010