Two Months ago…

I started the TLC Hands-Down-a-thon in an effort to reduce my hair pulling. Perhaps some of you have kept up with my progress on here. For those just visiting for the first time here’s the gist:

1. The first few days were great & I was really empowered. I sent out lots of emails, got great donations, and did great using my tools to help beat urges.

2. A couple of weeks into September I really started to struggle and it was hard for me to stay motivated. I felt like I pulled a lot and even though I wasn’t feeling stressed, I just was frustrated.

3. I read some helpful info in some of the books I’m using for research. Even though my donations had fallen to zero and I was sad about that, I found a new tool (aka pen caps) and started taking a more proactive approach.

4. I lost my favorite pen cap in the car somewhere, so driving is still a struggle for me. Hopefully wearing winter hats will help with that some. I’m doing much better at home and have been managing my stress level much better than I’d have expected considering the HUGE deadline I have in only 11 days.

5. I have just about two weeks left of this major stressor hanging over my head. At the same time, I’ll be learning more great things about hair pulling and music therapy, so I’ll share what I can when I find something interesting!

So thanks to those of you who have been reading. I hope that you’ll stick around. Please comment if you ever have questions or something to share. It gets a little lonely on this side of the monitor.

As an aside, I got to dress up for Halloween this year and used a felted cloche hat I made last year for my 1926ish garb.  My hair is a great length right now for that era & the hats:

Halloween Magic

Look, I can disappear!

Or rather, I did and now I am reappearing.

Those of you who have been reading for a while might remember that I have a big presentation about Trich coming up in two weeks. In fact, I will be on the plane two weeks from right now.

So I’m frazzled and the stress is just starting to really settle in. I just need to buckle down & get comfortable with my presentation notes. It will all be fine, but the anxiety has held off longer than I’d expected. That was nice.

But I’m going to be busy and stressed so if you don’t hear from me for a while, no worries. I’ll be back once I have my head screwed back on straight.

I miss you!

I haven’t received any comments in a long time! I keep getting hits, so someone is here reading, or at least looking. If you’re a regular reader, or even someone new, I would love to hear what you think, what you’d like to see on here, comments, questions. I like having some interaction with my readers. Use a code name if you want, I don’t mind. You don’t see my name listed all over either, do you?

Ups & Downs are inevitable

If you’ve been keeping up with me recently, things have been going a little more smoothly. I have a better handle on my triggers & using tools proactively.

Today, however, was not one of those days. I let some frustration and stress get to me. Maybe a little fear sprinkled over with a bit of overwhelmed on top.

I wish this weren’t the case, but I also know that it was just one day, and compared to other bad days, I still did better. Tomorrow is new and after some sleep, I will try again.

How do you encourage yourself after (or during!) a rough patch?

Two more weeks

There are two more weeks of the Hands Down A Thon to raise money for the Trichotillomania learning center. I’ve been doing a whole lot better this week with a few slips here & there. Overall my pulling is way down from even a couple of weeks ago. Afternoons while driving home are still the worst for me, but with the discovery of pen caps to keep my mouth occupied, along with beads for whichever hand isn’t steering, I’m doing a lot better.  If you read this blog regularly and haven’t yet donated to TLC, please click on the “firstgiving” link to the right and sponsor me in my efforts to raise money for TLC.

I have 3.5 weeks left to work on my presentation about BFRBs and music therapy, so I’m tying up loose ends, making sure I have everything in the presentation that I want, and then I need to start timing myself to see if there’s anything else to cut out.

In addition I’m submitting two more proposals for other conferences on similar topics. Everything is due during the next couple of weeks so I’m starting to feel a little overwhelmed. Part of me wonders whether all of this presenting is a good idea since going to these conferences is expensive, and I don’t even know how this first presentation will go. But I figure it will get easier the more I do it. It’s good exposure both for music therapy and for BFRBs, so even if I don’t meet my own goals of success, the world as a whole will be better off.

Speaking of, I’d better get back to work. I have my squeezy hat on today so temptations are very low so far. Too bad I can’t just wear one of these all the time!

Could it be that simple?

Can you tell what that is?  It’s a pen cap.  One from a bic cristal pen, in fact.  And it seems to have saved me this week.  I’ve never really been one to chew on pencils or pen caps or anything.  But in a random moment of typing over the weekend I put my pen in my mouth to hold it while I did something else.  I realized that with its different edges & textures on it, it was good for satisfying some of the mouthing issues I have when pulling.  Sometimes it is my scalp that tingles and I pull because of that.  Sometimes my hands need occupying or get bored.  Sometimes it is just anxiety and sometimes my lips & teeth need something to do.

Yes, I’m one of the ~45% of pullers who also plays with the hair after pulling (can you believe its that high?) and I haven’t ever been good at subbing that particular part of things.  I can keep my head compressed (hat) and my hands busy (knitting, gloves, wrapping in a blanket) but other than when I’m actually eating, I haven’t ever subbed my mouthing behaviors (unless chewing my lips and such counts–but that’s not a “good” sub).

So, I don’t like pens with lids on them anyway.  I prefer the spring loaded kind.  I hate messing with caps so they usually get separated from my pens anyway.  So this is great.  Now I can have a few of them laying around and instead of capping my pens, I can suck on them instead.

It’s a little weird, but it seems to help a lot.  Are there any day to day items you have around you that may be an unknown tool that you don’t have to go out of your way or spend money on to use?

3 Weeks Left

I know I’ve said it before, but I can’t believe how time flies. Here we are nearing the half way point of October.  Yipes.

There are three weeks left of the Hands Down Challenge and I finally feel like I’m making some headway again. I’m not sure what clicked into place but it has been easier to feel urges coming on, find tools to use, and resist said urges. Perhaps it is partly due to reading through The Hair Pulling Habit for my presentation. I’ve always known about this book but never bought it since it is targeted for younger pullers. The advantage though is that I was able to read the whole book in one night and it did really simplify the whole behavior mod/comprehensive treatment model for dealing with urges. Their strategy is “Fiddling SHEEP” which is just funny, but you’ll have to check out the book or the website to find out what that actually means.

Anyway, even though most of it is stuff I knew already and have done in one form or another over the years, it was really nice to have a quick-read version.  (Granted I didn’t read all the samples by “Sally” the puller in their book.) Since reading is a trigger for me, the faster & more concise the better. To actually DO the program it would take weeks, but even the reminders from browsing it were helpful.  Once this presentation is done and I feel I can concentrate on ME a little more, I might try going through a couple of the programs I’ve read up on and find a plan that works better for me.

One thing I knew but had slipped out of consciousness was that to really be successful, you have to use your tools BEFORE you actually need them.  By the time your hand is on your head it is too late.  It works better if the hat is on as soon as you sit down at the computer so you don’t have to go get it later (which in my case rarely happens).  Put band-aids on your fingers even if you don’t feel any urges or have your fiddle toys in your hands when you sit down to read rather than having to find them later while you are in the thick of trying to resist urges too.

So, I am making progress at least for now and I hope it sticks. If any of you feel like you’re floundering but don’t want to read through a BIG book like the Penzel or Christenson et al books, then I suggest looking at “The Hair Pulling Habit and You.”

Last Day!

Wow, today is the last day of Trichotillomania Awareness Week. Time flies & way too fast for my taste lately.

I don’t have much to say today. I’m trying to make myself more aware and catch myself if I start pulling or any of the precipitating behaviors (scratching an itch etc.). Driving is still the worst and my defenses are down because I’m trying to stay between the lines!

I went to support group again last night which was very small. But I got invited out to dinner with some of the members after so that was nice…especially with my lack of local friends issue.

So I’m just checking in to say hi and to commemorate that this week was awareness week. I don’t have anything terribly insightful or inspirational to pass forward however. I’ll try harder next time.

Sensory Speak

Apparently my plan to post once every day during Trich week isn’t working out so well.  I thought I’d only missed one day, but it has been two.  Oops.

I’m not getting very many hits lately though, so did any of you even miss it?

I’m sitting here with one of my warmest softest hats on today.  I’ve posted about these before and they are just a little stretchy so they compress my scalp a little.   So lets talk sensory.

My guess is that most people don’t even know what I’m talking about unless you’ve taken a ComB (Comprehensive Behavioral Model) training or learned about SCAMP from Dr.  Mansueto.  Dr. Mansueto is the first Trich specialist that I know of who identified and felt it was important to treat the sensory needs of clients with TTM.

Working with kids on the autism spectrum like I do, sensory needs are something I constantly think about while at work.  Many of the behaviors and frustrations presented by these kids are because they are too over or under stimulated and their brains aren’t wired to help them regulate these sensations.  It may be the lights blinking too much, back ground noises, planes flying outdoors (some of them have amazing hearing, sometimes even perfect pitch), too much movement around them.  It may be that their joints aren’t receiving the sensations of pressure and movement than most of us take for granted (which leaves them feeling like they don’t really know where their body is in space & they sort of float).  They will self stimulate with waving their hands in front of their face, needing to carry certain objects al the time, etc.   I’ve had a few students who pull their hair or twirl it as a part of their self-regulation.  It can send them into a behavioral and/or emotional tailspin if these needs can’t be met.

I have some of my own sensory issues as well, and started wondering about the connections between what worked for some of my kids (fidget toys, weight vests, bear hugs for joint pressure, etc.) and if they might not help me.  Accidentally getting this first compressing hat was the connector for me.  I’ve used other hats & scarves, but back when I wore wigs they had to be big enough to fit over that extra hair.  So they never compressed.  When I got this one all of a sudden, my hand almost stopped going to my head at all when I had it on.  Doesn’t make any sense UNLESS it is that my scalp just needs some extra stimulation (in this case pressure rather than pulling) to help regulate the little bit of extra sensory stimulation I need.

This hat and looking into the sensory components of TTM are actually what eventually led me to present music therapy at the 08 TLC retreat and now to present about BFRBs & Music Therapy at my AMTA national conference.  Music Therapists, especially those trained to work with clients with sensory issues, could be of huge benefit to us pullers who need to figure out a good sensory diet that might help us stop pulling so much.

Pretty good for a hat I bought for $6 on clearance, no?

So if you still struggle with why you pull and especially those zone-out trigger moments (computer, tv, driving, reading, etc.) see if you can identify whether you feel over or under stimulated.  Are you bored or are you feeling anxious?  See if you can find fidget items or head covers or a heavy blanket that help you to feel more at peace.  These little things might just give you one more tool to fight the urges.

Hair Adventure, Updates

First off, October 1-7 is National Trichotillomania Awareness Week.  If I can manage it, I will try to post at least once per day for the week.  I’ve updated my picture and status of Facebook.  Have you?

Now, the update on my adventure:

On Sunday my husband and I went out to pick apples, have lunch, & stop at a store that’s on the way home from the orchard.  We do something similar every fall and since I like Macintosh apples it is an early trip, usually still decently warm.  (We used to wait until closer to Halloween but I missed my favorite apples and it usually was just too cold for me to have fun.)

For whatever reason I just didn’t feel like wearing one of my headbands.

I also didn’t feel like wearing a wig.  They are just a pain and I like being free of them.  So even though I feel like my hair is at its thinnest point yet (since having grown out two years ago).  I WENT OUT WITHOUT ANYTHING ON MY HEAD BUT MY OWN HAIR (and quite a bit of hairspray…which I’d forgotten I even owned).

I actually asked my husband first if he was okay with it.  He looked at me like it was a stupid question, or he didn’t understand what/why I was asking.  So I assume he was okay with it.  Because this felt monumental, I took picture.  (Still not sure why I didn’t ask HIM to take pictures as they would’ve turned out better…I just felt I needed to do it.)  I don’t love the way it looks, and I was worried about the wind since there are LOTS of thin spots…but I think I was in need of the challenge.  Or to just go out and be myself and not let the fear rule my day.

This is pretty much still how it looks underneath or pulled back.

So even though I haven’t been doing super great on my Hands Down A Thon goals, I did make a major step forward.  I know I can go out this way and be okay.  I don’t think I even got any weird looks.  Not even when the wind blew.  But even if I had, what would it matter, unless I LET it matter?  So I say that is progress even if I’m still pulling way more than I’d like and not using my tools as much as I’d prefer.

On that note, today begins the second half of the Hands Down A Thon.  I can’t believe the first month is already gone.  It really seems like a week or two ago, not 4, that I set up my page and sent out all those emails.  I haven’t received any recent donations either, and I miss the little notices in my inbox.  They were really encouraging!  Here’s to a better 2nd half of the fundraiser!!