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Archive for February, 2008

You pullers know all about it.  One day you do really well and the next day, things are bad again.  It gets to be a frustrating circle.  One day it seems easy to not pull and you’re thinking “if it stays like this it should be so easy to be pull free.”  But then the next day you wake up and it isn’t easy anymore.  Either you are constantly resisting an urge, or you don’t even recognize the urge and are just pulling like mad.

Yesterday I did really good.  The CD player in my car started working again, so I did my behavior mod. with my book on tape.  It worked really well.  The rules are that I can listen to the book as long as I don’t pull.  If I pull, then I have to turn it off for 5 minutes.  As long as I go pull free during that time, I can turn it back on.  If I do pull, the 5 minutes starts over.  As long as it is a good book, it works really well for me.  But I haven’t been using this technique except for when I’m in the car, or when I’m reading a book.  It doesn’t work so well at the computer, where I need to be working or accomplishing something.

So, since I’m not working, and not driving today, but still working on the computer, I’ve been pulling a lot today.  I have a massage in an hour, so I’m hoping that will help.  At least for an hour, I know I won’t be pulling.  If I’m lucky the relaxation will help too.  Then I can think about making dinner or sewing and hopefully keep my hands busy.

I hate these fluctuations though.  Even keel would be so much more comfortable, don’t you think?

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As you might have noticed, I haven’t posted much lately.  I’ve really found myself struggling with my mood lately and so it is hard to post when I feel I’ll just be complaining.  We’ve finally had a couple days of sunshine, and I think that has helped a little.  I’m still trying to get a handle on taking my medicine like I need to be.  Hopefully if I get back up to the right dose, but can find a way to take it without keeping me up at night, I will start feeling better.

Earlier in the week I was feeling completely defeated after realizing that a patch of scalp I thought was covered, wasn’t.  I thought I was okay at work, and yet it had probably been showing the whole time.  Ugh.  That got me really down.  I think that I found a way to fix it though.  I just have to brush the hair over when wet, clip it with some gel in it, and then take the clip out once it is dry.  That seems to help some.  But my pulling is pretty bad right now, and because of my cruddy mood, I haven’t felt like fighting urges at all.  It just seems a lost cause at this point.  That gets me even more down.  I’m just trying to avoid any trance like pulling and pity parties.   If I can avoid those, then I can still function pretty well.

Lastly, I heard about this conference today.  I would love to attend it, since it is only a few hours away from home.  It’s awfully expensive though (more than my professional conferences!) and I couldn’t write it off as a business expense like my music therapy conferences.  I already have to be in Chicago at the beginning of April, so I just don’t know.  Is anyone else going?

http://www.trich.org/Conference/08conference.asp

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Frustration

Lately I’ve been pulling more, and I can’t really figure out any reason for it.  I don’t feel any additional stress, but then I guess that’s nothing new.  There rarely seems to be any rhyme or reason to this whole thing.

I really feel lazy all of a sudden about trying to “get any better.”  Even putting on a hat just seems like too much of a hassle.  It isn’t that I now want to pull or that I no longer want to stop, I just feel like I have no energy to put into the therapeutic process.  How can I be gung ho one week and totally lethargic or apathetic the next?

Right now I think I’m just tired and that never helps.  I’ve had a couple of nights lately that I’m so tired, I’m practically asleep, and yet I find myself pulling in a weird state of delirium.  But as for the rest of it, I don’t know if it is seasonal affect disorder, or if my meds aren’t at a good dose anymore, or what, but I need to find a way to get back on track.  Any suggestions?

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I had promised a page with more information about the various methods of therapy that I’ve tried over the last 18 years.  Please look for the tab a the top of the screen that has the same title as this post.  Feel free to comment with any questions you might have.  Please indicate whether you would like me to email you with a reply, or if I can answer in the comment box (meaning you’d need to come back to the blog to read the reply).

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Today was bad

I pulled so much today.  I don’t have any idea why.  All of my stress happened this weekend, so I don’t understand why I’m pulling today so much.  The gist of the story is that I took my husband to a really nice hotel on Saturday night so we could have some away time with no distractions.  While we were gone, our pipes froze.  So on Sunday afternoon, I had to crawl under the house to thaw out the pipes.  It didn’t go smoothly, and while no pipes burst, it did take until Monday morning for them to thaw out.  I spent hours under the house in the below freezing whether and negative windchill.

I couldn’t pull then, of course, because I had on four layers of clothes, three hats, gloves & mittens.  So my only thought is that all of my stress and anxiety about the whole situation just built up over the weekend, and because I’m so tired out from all of that, I relieved it through pulling today.  I’m not really used to a “delayed reaction” like that though.  I don’t really have anything else coming up that should be anxiety producing, so that is the only thing that makes any sense to me.

I have to do better tomorrow at not letting my hand go up there in the first place.  I’ve found that the phrase “the best defense is a good offense” holds true in Trich.  The more that I can keep from even getting started on pulling, the better off I am.  As soon as I pull once, it is sort of like the floodgates open and then I can’t stop.

Tomorrow is a new day, and hopefully it will be much better!  Now if we could just get rid of some of this snow & the cold windy weather.

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I think I might have finally gotten through the worst of this virus that I had.  Unfortunately as the result of sleeping a ton, hardly eating anything for days, and spending way too much time on the couch resting, I also have gotten back into pulling more.  A day home sick was when my pulling first began and to this day, sick days can do me in.

I can tell that I missed a bunch of my medicine (because I have to take it with food & I couldn’t eat).  My mood sucks lately.  All of a sudden I get the feeling that no one likes me or appreciates me, and that they only talk to me because they feel like they have to.  I know this is from the depression that I have along with the Trich, so I’m working very hard at convincing myself the thoughts aren’t realistic and that I don’t have to get down about them.  I just need to get back on track with my Effexor and I should be okay.  At least I won’t be so paranoid & down.

So now I have to try and crawl back up on the wagon and work on this CBT stuff again.  I can’t tell if it works at all, but at least it makes me more concious of my pulling and it puts me somewhat in a position of control as to whether I choose to give into the disorder or choose to fight a little harder, at least for right now.  Sometimes I’m just too tired to care and so I pull.  Sometimes I’m too sick & it doesn’t even occur to me not to pull.  Sometimes I resist for a while and then give in because I can’t stand the itchy sensation on my scalp.

But even when I do give in, its up to me whether I’m going to pull myself up by the bootstraps & try again, or just let myself go crazy.  My goal is to still be wig free for my trip to Chicago in 2 months.  If a miracle somehow happens in the next two months and I can get enough hair to grow back in, I would love to also be headband free, but I don’t think that’s going to happen.  (See the photos page if you don’t know what I mean by the  headband.)

So I’m back, and if I promised you a post containing any specific information, I will get on it shortly!

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I think Sea Monkey had a great idea in his last comment: a dinner reward!  So how many of you pullers out there have tried the reward system?  It was one of the first behavioral interventions that was tried when I first went into counseling.  I think I got 20 points per day, and if I pulled, I lost points (that way if you don’t pull you get a bigger reward faster).  The points would then add up so that I could get something I wanted, like a pet hamster, a trip for ice cream, etc.  Different rewards were different point amounts.  Maybe the hamster (which I REALLY wanted) was 500 points and a trip for ice cream was 50 points. It worked for a while, but then, since no one was really holding me accountable, I just started fudging the results so I could get my rewards faster.

 I tried this technique again when I began trying to grow my hair out for my wedding.  Again, it worked for a while, and then I got lazy again.  This seems to be how it goes for most any of these behavioral interventions: they are hard work -> I get tired & lazy -> I become my own worst enemy.  It really helps when you have someone checking in and holding you accountable.  It works the same way as weight loss, I guess, where you tend to do better if you have a workout buddy or someone you chat with every day to talk about what exercize you did.  The other problem with doing the points with my husband was that we went out to dinner a lot for special things anyway.  So trying to earn them became kind of redundant.

So what kind of behavioral modification programs have you tried?  Has anything worked really well for you?  Was anything a total flop?  Please share.  Or ask me questions if you want to know more about what I’ve tried.

Today was a rough day pulling wise.  The weather is bad but I opted to come to work anyway.  I know the ride home is going to be slippery so I’ve been keyed up about that.  I’m also low on sleep which never helps with resisting urges.  But, because of the Sea Monkey comment, I now have a reminder about why I need to keep resisting those urges.  Seeing as my head itches like crazy again today (in a different location), it is proving very difficult!

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