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Archive for June, 2008

My head is itching like crazy and I have pulled a little recently, but for the most part, this weekend has gone REALLY well.  It could be the new homeopathic.  It could be that I’m at my parents’ rather than my own house.  It could be some funky swing in my body chemistry.  Whatever it is, I’m glad for it.  My pulling has slowed for the past couple of days, as have my other anxious type behaviors.  I’m still having a really hard time not picking at my shoulders.  Tonight I got a ton of mosquito bites too, so that really doesn’t help keep my hands away!!

In a backwards way, my success could be attributed to a proactive move I made for if I keep pulling until all of my hair is gone.  I found out that the owner at a local salon does wig consultations and styling for cancer patients.  I wrote to her asking if she’d be willing to help me out with mine since they’re all looking aged (luckily from sitting in a cabinet for a year rather than because I’ve been wearing them).  She trimmed them up and did some re-shaping and they look lots better.  It’s a lot easier to feel comfortable and confident while wearing them if they actually seem flattering.  Funny how that works. 

My goal still is to go wig free and grow my hair out for as long as I can.  However, now I have wigs I like, which I can throw on if I need an extra barrier, if I want to dress up a little, or if I just need a change.  I hope to be able to wear them for “fun” and hold them in a positive light.  If I have to start wearing one full time again, I know it is going to become a drag quickly.  But at least I will like my choices, instead of choosing the lesser evil.

I’ll post pictures soon.

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One small step

I tried an additional homeopathic remedy this week and I’m in the middle of the treatment.  I was feeling very anxious & aggitated this morning, but I’m not sure if it was a flair up of symptoms (which sometimes happens with these treatments) or if I was just overly tired from staying up too late.

However, by this evening I was feeling more calm.  I had to drive 1.5 hours tonight and I actually managed to only pull once!!  That’s totally unheard of lately.  There was a little resisting of urges going on.  What really helped was that when I got in the car, the first thought I had was to grab my beads and try to figure out a way to keep my hands from being able to get to my head.  I haven’t been able to initiate the use of these tools for weeks now.  I think this must be a step in the right direction.

Hell, even if it was a one time fluke, at least it saved a few hairs on my poor abused head.  I’ve been pulling so much lately that I have sore spots and scabs.  Ow.

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Unbefreakinglievable

That’s almost as bad to type as supercalifragilisticexpialidocious!

So a couple of posts down I was lamenting about trying to use my experience as a behavioraly oriented music therapist to help with Trich.  I know the theories and how it should work, but I can’t exactly do music therapy on myself.  So after attending the 2008 TLC Conference in Chicago, I got really excited about how I might be able to really apply music and music therapy to pulling.  Since I don’t know any other pullers in my area, and only know that there are three (not ready to meet yet apparently though), I haven’t had a way to actually implement any of my ideas.

Enter the TLC Retreat (also a few posts below) coming up in September.  In a quick email to TLC, I commented that I would be interested in presenting at the next conference, but also providing some music relaxation at the retreat if I attended and they had an interest.  I hadn’t heard back from them, so I called yesterday.  With a short explanation of my journey with Trich and how I see Music Therapy techniques being helpful to pullers, as well as why/how I want to share them, I apparently made a pretty big impression.  I am now going to facilitate music therapy experiences as the 2008 TLC retreat!  I am beyond excited.  This is the best birthday present ever (my birthday falls on day 2 of the retreat.)

Pulling is such a huge part of my life journey.   Music Therapy is obviously a huge part of it too.  They have always been very separate from one another.  This is due, in part, to a professor who once told me that someone with “my condition” wouldn’t make a good music therapist.  Well, that just gave me more drive to prove him wrong.  Now, in a concious effort and decision, those two worlds are going to come together in one big chorus of instruments.  The amazing thing is that I know I’m going to gain as much or more than any of my participants.  I can’t wait to experience the power of musical sharing and exploration.  I just hope that I can do MT justice at the retreat and really share its power with the other participants.  It’s one of those things you just have to experience to really understand.  I can’t wait!!

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What to even say…

I had a bad night last night.  I stayed up later than I should, working on things that could have waited.  I knew that and kept pushing myself.  I pulled A LOT!!  The worst part is that I knew I was doing it and let myself keep going.  I don’t think I tend to associate any of that with feeling guilty.  I’ve never really taken my pulling personally like that.  It has always been “the disorder” that causes me to pull.  But I get frustrated when I can’t access the part of my brain that wants to stop the pattern.  Frustration and sadness are my biggest emotions right now.

I’ve realized that part of my problem right now is that we are having abnormally hot temps compared to what June normally is for us.  I was doing okay during the winter when I wore hats a lot.  But now, even with the AC on, it is too warm to feel like having a hat or bandana or anything on my head.  I have a hard time keeping them on even when I try.  So today I have the bandana on and then have it tied into the mini bun that I still can pull together.  That way if I try to take the bandana off, it is still attached with the hairband.  We’ll see if it works.

I’m feeling very strange and jittery today.  It is a hot day outside, but I think I might head to the community pool to read, just so I’m around strangers.  That should help keep my hands from my head.  We’ll see.

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As I’ve mentioned before, I find it frustrating to be a music therapist with a behavioral background.  I can set up a behavioral program for a student, and I can “work the system” to make them succeed and work towards their goals.  I cannot, however, do this for myself!  I seem to be better at setting myself up for failure.

Anyway, I had another thought today that seems equally ridiculous.  One of the first things we learn in Music Therapy classes is that music is a great way for people to practice & learn impulse control.  Music is made up of sound (notes) & silence (rests).  If you follow them in a prescribed order, you have a song.  If you deviate from the prescription, it either becomes a different song, or it becomes noise.  I work on impulse control goals with my kids ALL the time.  I don’t know how many days I am singing along, giving directions through lyrics and/or examples, and then I sing “a…nd STOP!”  That is the cue for the kids to silence their instruments and wait for me to say “go” again.

Seeing as I have an impulse control disorder, and one that is totally in control of me at the moment, how on earth am I qualified to be teaching kids how to control their impulses!?  It is so ridiculous.  Now obviously, I’m not running out into oncoming traffic, or banging my head against a wall, or pinching someone, like some of my students when they are impulsive.  But still, I sort of feel like a hypocrite.  Now to be realistic, I don’t think this disqualifies me in anyway.  I just find it amusing to think about.

But the question remains:  If music is the perfect way to practice impulse control, what can I do as a music therapist to help myself and then spread that knowledge to others?  I’ll let you know if I come up with anything.  If you have any ideas, let me know.  I’d love to experiment a little.

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TTM/TLC Retreat

When I first started pulling I was a member of the Trichotillomania Learning Center. I think my membership lapsed when I started college. Or maybe it was when my parents made me pay my own membership dues. Either way, it has been a good 15 years or so without having much contact.

However, after attending a few sessions at the spring conference in Chicago, I re-upped and now I REALLY want to go to this retreat. I’ve toyed with it in years past, but this year it actually seems sort of possible. Now that I’m married, I have someone who can stay home and feed the cat, pay the bills, and make sure the house doesn’t catch on fire. Well, as long as he doesn’t try cooking. 🙂

Anyway, for those of you who are pullers, or are the parents of a puller, check out the retreat info. I am hoping to do a music relaxation session or two if I go, so that I can share my music therapy as well as my experience as a puller. I hope to see you in California!  If anyone wants to send donations to help with airfare, let me know!  🙂

http://www.trich.org/retreat/index.asp

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Diatribe

I don’t feel very witty and I don’t have a whole lot to say.  It has been a few weeks since posting, though, so I feel as though I need to put something on the site.  I’m still struggling with my pulling.  I am barely aware of my pulling, and even when I am, I have no motivation whatsoever to stop.  The little voice in my head isn’t kicking in to remind me that I don’t like the ramifications of pulling.  Until I can start to access that again, I’m not sure how I’m going to make any progress.  It is that outside observer/voice that is my awareness.  It is what links the puller part of me to the day to day “Dawn” part of me.  Right now they don’t seem to be on speaking terms.  I got a supplement from my kinesiologist that he seems to think might help curb the anxious part of things.  It’s only been a day, so now its a waiting game.  I’ve had a harder time sticking to the gluten/sugar free regimen the past few days.  Partly because I’ve been away from home, but also because cheating is so much easier and tastes good.  Apparently my will power is out to lunch with my inner voice.

So I guess this is a venting post.  I think part of my problem right now is that I’m just apathetic.  I am not mad at my disorder.  I’m not irritated that I’m “stuck with it.”   For the most part I’ve been feeling really good physically, so it is hard for me to say “my lot in life sucks,” because I know it doesn’t.  The only problem is that means my fight has waned.  I’m not actively working against this disorder, and I think that is where a lot of my awareness comes from.  It is the suckiness of the disorder and the symptoms that often makes me work the hardest to try and beat them.  It just isn’t happening right now.  I want it to be easy.  I want the disorder to just vanish.  After almost 19 years of pulling, I know that isn’t going to happen, but I can always dream.  I keep hoping that in my research and experimenting, I will be the one to find that “magic cure.”  Actually, I don’t care if it is me.  But would someone please figure this stupid disorder out already!?  I love my spiral curls and some days, even the massive fluffy nature of my hair (just not when it is humid).  So why in the name of all that is holy do I pull it out!!!??  Argh.  I know you all know what I mean, and that is why I write; even if it is really infrequently.

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