Tuesday, September 27, 2011

Being A Music Therapist With a Headache

Music Therapy time with Miss Caylyn!
Sorry for the creepiness of the kids' heads being blurred.

Physical pain messes with my emotional energy which makes it twice as hard to do my job as a music therapist. Sometimes I feel like I can't focus on planning and working on new songs and interventions because I'm so drained from the headache, which is out of my control. Then there's the obvious trying to sing, play the guitar, and listen to kids banging on instruments with a headache. *deep sigh*

But it's not always about the physical pain. God gives me moments of encouragement right when I need it.

Yesterday a student was sad after music therapy group was over and he was crying. This student uses an ipad as an augmentative communication device to speak. The teacher asked him why he was sad. He typed, "music gone." She said that Miss Caylyn would be back again. Then he initiated the statement, "awards to Caylyn". The teacher said, "oh, you think Caylyn should get an award? What would Caylyn's award be for?" And he typed singing.

This morning I was meeting with my supervisor to talk about how the year was going and what my goals were for the year. We were talking about an ED high school program that I go to for students who cannot function in the general education high schools. My supervisor said about that teacher, "well she already thinks that you set the world on fire."

This morning at an elementary classroom for students with autism, I was packing up after music therapy group. A student was listening to music as her break for work (ironic because her 'work' was music therapy and her break was music). She asked me if she could sit on my lap. She was smiling and laughing. She hugged me and asked me to do silly noises with my lips (a stimulation she really likes).

Today I had a private guitar lesson with a student that I also see at school in one of the classrooms I go to. He is always so excited for his guitar lesson (and he is a great musician too!). I was telling him how today we had guitar lesson and tomorrow I will be at his school for music therapy. He finished the sentence, "and have fun!"

It's moments like these I'm so grateful I have. They are greater than the headache. They provide validation that, even though I don't always feel like it, the headache is not winning and is not interfering with my job.

Wednesday, September 21, 2011


From a college friend that I haven't seen in a long time. We were discussing attending our American Music Therapy Association national conference.

Me: I am going. I registered so I am committed and now doctors bills have come up,
but it should be fine. I have an understanding husband.

Friend: That's great to have a supportive husband... this must be so challenging
for you... you really are so strong!

Me: Ha, I don't feel like it, but thanks. But he amazes me at how he loves me in
sickness and health and doesn't make a big deal about the expenses of the treatment.
God knew what he was doing when he gave me Chad as a partner.

Friend: To keep living, keep working, not letting the headaches win... I think
that's strength. It sounds like you are truly blessed with Chad and that is amazing!

Me: You're right. It's a daily challenge but worth it for my well being. And maybe
I don't give myself enough credit for just keeping going, so thanks for the reminder :)

Friend: No problem! Sometimes we forget how strong we are/can be!

Monday, September 19, 2011

A Hug Does A Heart Good

When our friends are sick, we care about them and hope that they will feel better soon. So that's what we tell them. But when you live in chronic pain, after failing traditional medical treatment, as well as alternative treatments, it's hard to accept the phrase, "I hope you feel better soon," from well-meaning friends. I used to feel frustration when hearing this phrase, even though I knew my friends cared, and were well-meaning, but I now appreciate them for reaching out to me in the best way they know how to. But, my reality is, I likely won't feel better soon. And it does not make me feel encouraged to hear that phrase.

So, what should you say to someone who is in chronic pain? The best thing, for me, is to sincerely ask how I am doing, as opposed to an obligatory "how are you?". The most meaningful and encouraging thing to me is to hear that you care, and to show me that by saying, "I'm sorry you are in pain", or "I'm sorry you're living with this", or "I am thinking about you", or "I will be praying for you and God's healing".

I don't remember a lot of things, thanks to the side effect of one of my migraine drugs, but one memory I do have is of my thoughtful brother-in-law reaching out to me, embracing me in a hug, and genuinely saying, "I'm sorry you're having such bad headaches", at a random moment at a social event. That moment still brings tears to my eyes.

A hug always does a heart good anyway, doesn't it?

Saturday, September 17, 2011

Motivating Music

Living in chronic pain has been bad for my workout habits. Why?

1. You're in pain, so you might not feel like going to the gym.
2. Exercising sometimes exacerbates the pain and you don't feel like inducing a headache.
3. Chronic pain causes exhaustion, so you may just feel tired and think you have no energy to exercise.

Because of these reasons, I have become mostly a donating member of my gym, except for the occasional yoga class. Now that I've had some slight relief, I need to get my rear back in gear. I saw this music group on Jay Leno the other night and couldn't stop laughing. They're pretty silly (and slightly inappropriate?). But it reminded me of how important it is (for me, at least) to have fun, upbeat music that motivates me when working out. I might just have to add this song to my playlist.

Warning: I would not recommend opening the video with young children around due to some inappropriate lyrics. (hey, at least I spared you the music video, which was super inappropriate and uncomfortable.)

Click: Sexy and I Know It on youtube

*PS: I'm disappointed I can't embed this youtube video on blogger!! Sorry!

Friday, September 16, 2011

Drugs, Drugs, Drugs.

Photo by emagineart / by 2.0 CC

In my journey to get rid of my chronic migraine headache, I have tried many treatments. I wish that permanent relief would have come with natural methods, but that doesn't seem to have been the case. That doesn't mean I won't try them again in the future, but for now my main line of defense is with drugs and Botox. Five weeks ago I received Botox to treat the migraine, which is FDA approved for chronic migraine sufferers who have failed traditional medical treatment. It appears to be providing a slight positive effect.

I saw my neurologist today and he wanted to start me on another drug. I think this is the 9th one to try. I'm still on one, but all the others have failed to make a significant difference. I hate being on drugs. Putting chemicals into my body to make things right makes me feel uneasy. And I hate the side effects. And I don't even know the long-term side effects. If Botox is my miracle treatment, what are the long-term effects of injecting that stuff in my head every 3 months of my life? One thing's for sure, while everyone else's face is full of wrinkles and creases in the nursing home, my skin will be smooth and youthful.

Something I have learned through this journey is that I am in charge of my treatment. As much as I hate the drugs, it's my choice to take them or not. Just like it's my choice what doctor I go to and what treatment I decide to embark on. So as much as I hate the idea of having to take the drugs to make me feel better, I hate not feeling well more. I hate being in chronic pain worse. So right now I choose to take the pills. I choose to be well. And part of that means taking the drugs. What do they say, 9th time's a charm?