Thursday, October 27, 2011

Lyric Analysis: Fix You

Music is powerful. It is also an incredibly powerful tool. A tool that I use everyday in my job as a music therapist. When I worked at an inpatient psychiatric hospital, I used music a a non-threatening modality to create an environment for the patients to express their emotions. It was amazing how they would engage in and relate to the music. I didn't even have to do the work! A strategy I would use is called lyric analysis. I would present a song that I believed had some therapeutic value, and I would have some pre-determined questions for the patients to guide discussion. I would also usually have a point I would like to drive home about the song that I wanted the patients to identify with. However, in psyc things don't always go as planned, and that was okay! The patients were always so insightful and wise in what they had to offer, it was exciting to see where things would lead.

Lately, I've been addicted to Javier Colon's recording of "Fix You".

If I were still working in psyc, I would likely bring this song in as a lyric analysis. These are some questions I would present to the group. Since I identify with this song in a way that's personal to my headache journey, I'm going to give my answers as well.

(I wrote the questions one day and answered them another, so it's almost as if this is an accurate lyric analysis.)

What did you try your best at? Finding and searching for answers for the headache. But you know that feeling when you try your best, and it's not good enough? That's how I feel.
If you didn't succeed, does that mean you failed? I don't believe I failed. I'm just not done trying.
Are what you want and what you need in life the same? No, but it would be nice if they both came true.
What do you want? To be pain free
What do you need? To be able to deal with the pain
What have you lost in your life? Relating to the headache: my ability to focus, my ability to smile and not feel like I'm faking it, my ability to run/exercise without a headache coming on, the feeling that it's easy to do things, I have temporarily quit going to our church small group because the extra noise makes my headaches intense, my patience and tolerance has significantly decreased.
What are your "lights" that guide you? (this would sure be an interesting question to ask in a psyc hospital, haha) Many people guide me and give me strength. First of all, I don't know how anyone lives with chronic pain and does not have the perspective of Jesus dying for them and one day going home to live with Him where there will be no pain and suffering. Pillars of strength on this earth are my husband and sister and family and friends. There are many co-workers that are so kind and gracious to me, even though I don't know them well, they still ask how I'm doing. I have found chronic pain blogs and communities online that provide great support and encouragement. All of these things/people give me hope and encouragement.
What does this phrase mean in your life? 
     "But if you never try you'll never know just what you're worth"
I will be going to the headache center in Michigan, which I think is exactly what I need. However, I still second guess myself and feel guilty about how expensive it will be and about how I will miss work and my kids won't get music therapy and how I will miss some other obligations through an organization I am an officer in. But the truth is, I am worth it. My health is worth it. And God has provided us with more than we will ever need. The reality of this as I type right now is so overwhelming. So, I have to try. I have to go even though it'll be scary, even though it will be emotionally exhausting. And by going, it proves to myself that I AM worth it. I need this.
What mistakes did you learn from? I'm not one to look back and regret, but I definitely do have mistakes to learn from. There are so many things I would have done differently had I known differently, or I would have advocated for myself more. But, at the time, I was doing the best I could with the information I had at the time. So, I know I wrote this question, but I'm choosing not to answer it. As it relates to my headache journey, I'm choosing to believe that nothing has been a mistake up until this point. Everything has fallen into place just as it should, so that I am landing in the situation I am right now.
Can someone else "fix" you? No, I do not believe that anyone on this earth can cure any other human on this earth, because only God is the ultimate healer.
In this song, who do you feel is singing to you "I will try to fix you?" All of the doctors and healthcare professionals who have made an attempt to help me. Like I said, I do not believe that they alone can fix or cure me. But I believe that if I allow myself to be vulnerable and have enough hope, then they can do their work and help me. And I believe that I will be well and live in significantly less pain.

Tuesday, October 25, 2011

Latest Migraine Treatment

Dr. Charles Weinstein
This is my neurologist, Dr. Charles Weinstein (a very old picture of him) from Neurological Consultants of Kansas City. He's a nice guy. Great bedside manner. And I think he knows headaches. I went to him because a friend's mom had a great experience with him and the treatment of her migraines. According to my primary care physician, Dr. Weinstein was treating me with the standard, research-based medical treatment. When one didn't work, we'd try another. Well, I've been going to Dr. Weinstein for a year and I am basically the same, if not worse, than I was a year ago. Today I was prepared to advocate for myself due to the intensity of my pain and say that this is not acceptable. I was prepared to inform him that I am considering a second opinion so I need to know from him what other treatment options he will consider. I was nervous about this even though I don't know why. I'm in charge of my care, but for some reason it took lots of guts and prayer to work up the emotional energy for this appointment. Turns out I didn't need it. God answered my prayers, because Dr. Weinstein brought up on his own how I am not getting better.  Then he said:

Have we talked about going to a headache center? I think it might be a reasonable thing to do.

Dr. Joel Saper
He talked about several headache centers across the US, but unfortunately there are none in the midwest. He eventually recommended the Michigan Headache and Neurological Institute, run by Dr. Joel Saper, who was the first person to establish a dedicated headache treatment center. Dr. Weinstein went on to tell me....

everybody they see is just like you, chronic daily headache, resistant to everything. It's a very comprehensive program. They have an inpatient headache unit. They work very diligently to come up with something that works better for you than what I'm doing. I mean, we've tried this, we've tried that, we've tried various things, we're not making any progress. And I think it would be a good thing to do. I think it would be a place that can offer you something that I can't.

They approach the psychological aspects of chronic pain, the effects of stress on headache and pain, diet, biofeedback. It's not just 'oh here take this drug and keep your calendar', it is a multi-specialty approach to treating this.

It's a very well-oiled machine. They're very efficient.

Dr. Weinstein said he would make the initial referral to MHNI and they would contact me to discuss the program and treatment costs and insurance. I left my neurologist appointment at 11:00 AM and at 3:45 MHNI had already called me. And they were ready to set up my appointment next week! Oh my. I need more time. I had talked to my husband briefly about what the neurologist had said, but gosh, we hadn't even talked about traveling and I needed way more processing time.

What I learned from that phone call was that everyone comes in for a full day appointment/evaluation, with all previous medical records. The doctor(s) will meet with you, do tests, and I will meet with a psychologist. Then by the end of the day they will confirm their findings and tell me their plan of treatment and recommendations, whether that is outpatient or inpatient. And I go from there.

At this point I've decided to give myself a day or two to process all of this and wait for some informational brochures in the mail. We are seriously considering setting up an appointment at the end of November, but we will see what works best for my situation. God's timing is perfect in all of this and I am so grateful.

Friday, October 21, 2011

Why I'm Like My Students

Don't get me wrong, I love my students. And I have the most respect and compassion for them. So this post, in no way, is written to make fun of them or take their disability lightly.

Through dealing with chronic migraines, I have realized that I share lots of similarities with my students.

  • Having to work at social skills. Lots of times I don't feel well and my husband tells me it looks like I'm pissed off. But I'm not. I don't think I do a good job of trying to hide it, because I'm not aware of how my facial expression is coming off. I don't feel mad, I feel like my head hurts real bad. 
  • I heard you, but it did not process in my brain. I cannot describe this embarrassing reality to you, but it's a harsh truth that comes with the bad headaches. 
  • I need visual supports. I went to a drumming continuing education course, and the instructor was giving a rhythm for us to play. It was somewhat complex, but nothing more than I have done in the past in my musical training. But I Could. Not. Get. It. Seriously. I was watching his hands, and hearing his mouth say the rhythm, and I knew I had the ability, but it was not working. I felt like if I could read the rhythm, and slow it down without everyone else playing, maybe it would work. It was an incredibly frustrating experience. And at that moment, it gave me a tiny glimpse into what emotions my students might feel. I don't know if they ever feel like that. But it made me realize the importance of giving them all the supports they needed (and as a professional, made me realize how important visual and auditory cues are).
  • You want life to go how you want it, but sometimes it just can't. Last week I was in a high school classroom for students with cognitive disabilities. We had done some great things through music, attention training, social skills, choice-making. So when a student started singing "He's Got the Whole World..." I placated him (and the staff) and sang it along with him. It might have made his day. But, you see, Miss Caylyn does not know all of the verses to this song. Or at least not all of the verses that another student with autism did. I ended the song, and this other student became anxious and upset because not all of the verses had been sung. So, he continued to sing the last verse himself. Which you know, maybe that's not so bad when I think about it. I could turn that into my last point....
  • You gotta do what you gotta do for yourself. That student has a history of needing to be in control and getting upset when things don't go his way. But, he was fine when he sang the last verse himself. Others probably think I'm crazy or don't understand my invisible illness when I need to advocate for my needs. But that's okay. Because that's what I have to do for myself.

Friday, October 14, 2011

If You Want Me To

How Did Ginny Owens get inside my head and put my thoughts to music?

If You Want Me To
The pathway is broken 
And the signs are unclear 
And I don't know the reason why You brought me here 
But just because You love me the way that You do 
I'm gonna walk through the valley 
If You want me to 

Cause I'm not who I was 
When I took my first step 
And I'm clinging to the promise You're not through with me yet 
so if all of these trials bring me closer to you 
Then I will walk through the fire 
If You want me to 

It may not be the way I would have chosen 
When you lead me through a world that's not my home 
But You never said it would be easy 
You only said I'd never go alone 

So when the whole world turns against me 
And I'm all by myself 
And I can't hear You answer my cries for help 
I'll remember the suffering Your love put You through 
And I will go through the darkness If You want me to 

When I cross over Jordan, I'm gonna sing and I'm gonna shout
Well look into Your eyes, and see You never let me down
So take me on the pathway that leads me home to You
And I will walk through the valley if You want me to
Yes, I will walk through the valley if You want me to

Thursday, October 13, 2011

Things To Remember

The past two weeks have been rough physically and emotionally. So here are a few things I want to remember and focus on.

  • One of my students' bright smile and excited voice after music therapy group, "Great job playing the guitar, Miss Caylyn!"
  • One of my students giving me a hug after music therapy and still holding on when I was ready to let go.
  • The multitude of genuinely kind-hearted people I work with in Blue Valley.
  • Friends across the country who are supportive and good listeners.
  • Joshua 1:9 This is my command- be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.

Sunday, October 2, 2011

On My Head

This weekend the nieces spent the night with us. I made a comment to Annabelle about how I loved her sunglasses and she of course offered to let me wear them. She is the most gracious 6 year old I know. She even left $.25 in the duck food machine for the next person when we were at Deanna Rose Farmstead.

I sure don't know what's going on IN my head with the headaches. But I can tell you what's going on ON my head here. Trading sunglasses with Annabelle...