Do I have OCD, or do I just like to clean? What is OCD?

Mom's Thoughts:

Like a lot of people, I've used the acronym OCD flippantly to describe myself before, "Oh, I'm a little OCD about this," even though I do not have OCD.  I have misused other such references, "Oh, I'm so ADD today, I can't keep my mind on what I'm doing!" when I don't have ADHD at all, I'm just being a flake or am overextended.

I guess we all have some obsessive or compulsive tendencies - maybe we call them "pet peeves." One of my pet peeves is dirty baseboards - something I attribute to my dad.  He always had us kids cleaning the baseboards, something I thought of as a huge waste of time when I was young, but now do it almost every time I am talking on the phone because it's an easy, mindless task and makes me feel productive.  Some may call that compulsive; I just like my baseboards clean.

But to say, "Oh, I'm a little OCD too - I keep my house (office, car, etc.) very clean and organized.  It's not that big of a deal,"  shows a great ignorance of the disorder and the amount of pain and suffering it causes its victims.  Yes, my hand is up too; until a couple of months ago I didn't know anything about it really either.  I just saw a video of Howie Mandel (love that guy!) in an interview with Larry King (not so much love for that guy!) that illustrates perfectly to me the pervasive ignorance in society about OCD and mental illness in general.  If you don't already know, Howie Mandel is a very open sufferer of OCD, and that was the topic of this portion of his interview with Larry:

So that begs the question, "What is OCD?"  Is it, as Larry King suggests, simply liking a certain amount of order in your medicine cabinet or in your home?  A disclaimer:  I am not a doctor or a psychologist!  I haven't even stayed in a Holiday Inn Express!  (OK, corny commercial reference.) But I have done a lot of research lately and have compiled a quick (i.e. not complete) answer that hopefully gives a pretty good summary.  The following paragraph is quoted from a very helpful website called HelpGuide.org:

What is obsessive-compulsive disorder (OCD)?

Obsessive-compulsive disorder (OCD) is an anxiety disorder characterized by uncontrollable, unwanted thoughts and repetitive, ritualized behaviors you feel compelled to perform. If you have OCD, you probably recognize that your obsessive thoughts and compulsive behaviors are irrational – but even so, you feel unable to resist them and break free.
Like a needle getting stuck on an old record, obsessive-compulsive disorder (OCD) causes the brain to get stuck on a particular thought or urge. For example, you may check the stove twenty times to make sure it’s really turned off, wash your hands until they’re scrubbed raw, or drive around for hours to make sure that the bump you heard while driving wasn’t a person you ran over. 

OCD signs and symptoms: Obsessive thoughts

Common obsessive thoughts in obsessive-compulsive disorder (OCD) include:

• Fear of being contaminated by germs or dirt or contaminating others.
• Fear of causing harm to yourself or others.
• Intrusive sexually explicit or violent thoughts and images.
• Excessive focus on religious or moral ideas.
• Fear of losing or not having things you might need.
• Order and symmetry: the idea that everything must line up “just right.”
• Superstitions; excessive attention to something considered lucky or unlucky.

OCD signs and symptoms: Compulsive behaviors

Common compulsive behaviors in obsessive-compulsive disorder (OCD) include:

• Excessive double-checking of things, such as locks, appliances, and switches.
• Repeatedly checking in on loved ones to make sure they’re safe.
• Counting, tapping, repeating certain words, or doing other senseless things to reduce anxiety.
• Spending a lot of time washing or cleaning.
• Ordering or arranging things “just so.”
• Praying excessively or engaging in rituals triggered by religious fear.
• Accumulating “junk” such as old newspapers or empty food containers.  

Me again:
So you can see, OCD isn't simply about being super clean (a common misconception) or being a "washer/cleaner" (the most well-known type of OCD.)  Many of those who suffer from OCD have more than one "type" - they may be a washer and a checker, for example.  A much lesser-known type of OCD that Elizabeth also suffers from (in addition to being a washer/cleaner & a checker,) she also has harm/aggressive obsessions, where distressing, violent images intrude upon her mind suddenly and repetitively at random times.  At times, they are so vivid and convincing to her, they seem like memories - like what she's "seeing" has actually happened.  (Imagine you think your car has just been hit by a semi and your sisters are dead next to you.  Sound distressing to you?  Yep, does to me too.)  They are so disturbing to her, they can set off a panic attack very quickly.  She's never experienced anything traumatic in her life - at least, nothing more traumatic than not getting picked for the team or making a bad grade on a test or running out of Fruit Roll Ups or whatever.  So where do these thoughts/images come from?  No one knows. 

These thoughts and compulsions can begin to intrude so much on your life that you can't function normally - you can't concentrate enough to work or study because of intrusive thoughts; you are constantly late because you have to complete your compulsions before you can leave the house, and it can take longer and longer to do that as your OCD worsens; you have chronic skin problems and/or are embarrassed in public situations due to your excessive hand-washing or checking rituals; you have difficulty sleeping or relaxing because of OCD.  OCD is a serious mental illness that arises out of anxiety, and can actually worsen anxiety issues. 

If you or someone you love suffers from OCD, you know that it is not a fun thing to have.  It often accompanies other problems as well, such as generalized anxiety disorder, panic disorder, social anxiety, and depression.  Diagnosing what you have and getting proper treatment can be tricky.   BUT from everything I've read, OCD is treatable!  Many people find relief with the proper medication.  Medicating oneself (and especially one's child!) is controversial, and I don't want to start a debate - everyone has to decide what is best for him- or herself.  For Elizabeth, medication to reduce her anxiety has been critical although not a complete fix.  We tried modifying her diet, relaxation and visualization techniques, yoga and exercise, but in the end she needed medication to find any relief whatsoever.  But there is no "magic pill" (darn it!!)  Research shows that cognitive behavior therapy (CBT) works very well to reduce and possibly eliminate symptoms.  I will post more about that and what Elizabeth has been doing in a later blog.  In the meantime, read up on what you can do to help yourself or your loved one, and find a good psychologist that specializes in anxiety and OCD if you don't already have one.

And if you have anything that has worked for you, please share it!  I am just beginning to learn about these things.  I want to open up discussion for everyone suffering - evil things whither in the light!  Let's bring it out in the open, into the light, and begin healing!

Let the Bird Fly Over Your Head...

Mom's Thoughts:

 We went to see Elizabeth's medical doctor (Dr. G) yesterday at a follow-up visit after he increased her dosage of Paxil to the max - 60mg.  During our visit, I told him that the psychologist had not started CBT (Cognitive Behavior Therapy) and had actually sort of pushed the notion aside when I mentioned it to her.  She also told me to ask Dr. G about prescribing Xanax or something like it to help her through the anxious days.  I was uncomfortable about it, particularly after reading more about Xanax on the web.  But I will admit, it is tempting on the days when she is suffering so much with her OCD and anxiety - a mom just wants to make it all better, right now!

Much to my relief, Dr. G told Elizabeth, "You would like Xanax, really like it.  You'd like it too much.  It is highly addictive and would start you on a slippery slope.  I don't think it's a good idea to start you on a benzodiazepine (Xanax, Valium are some.)  They are a quick fix, but we are looking for a long-term fix."

Dr. G and I agreed that perhaps her psychologist was not the right person for the job.  He gave me a referral to a psychiatrist that he sends his son to for ADHD.  He said, "We need to get someone to pick you apart and find out what all is in there and how to treat you best."  There are also psychotherapists in that practice, so we can get her a team that can really get to the bottom of things.  I hope and pray!!  It's time for someone other than me to help her with CBT.  We have been working on it together with the help of Dr. John March's book, Talking Back to OCD.  (Here's a link to the book on Amazon:  http://www.amazon.com/Talking-Back-OCD-Program-Parents/dp/1593853556)  It has been great, but I think we need reinforcements. 

Two websites I've found helpful:

1.  Steve Seay's blog:  http://www.steveseay.com/

 Dr. Seay is a psychologist in Palm Beach who has some great information about all kinds of OCD on his blog where you can post questions that he and others will answer.  He talks about things in a very easy-to-understand way. 

Among other things, I found some very helpful information on Dr. Seay's blog about Aggressive OCD - a fear of hurting or killing someone, something Elizabeth suffers from among other types.  It was such a relief to see that not only is it common, those who have it are typically very kind, caring, super moral people, which Elizabeth is.  She would never hurt a fly!  So she is sooo distressed about those thoughts and images, they kick her into a full-on panic attack.  Now that we know they are put into her head by OCD, it has helped some, but not much.  We need more help for her to be able to get those thoughts out of her head. 

2.  Shannon Shy's Facebook page - Shannon is an ex-Marine who also suffers from OCD:

http://www.facebook.com/pages/Shannon-Shy-OCD-Can-Be-Defeated-Im-Living-Proof/

He posts motivational comments and quotes each day and gives others with OCD a place to learn, comment, etc.  He and a reader had a conversation about how to beat OCD by not feeding it - ignoring it...  Shannon says, "allow the thought; don't resist it.  I didn't care whether I had the thought or not."  His reader's reply was something that really stuck with me... "Let the bird fly over your head..."

I love that... Let the bird fly over your head.  We can beat this!!  Don't feed King Kong! 

Every day is a challenge...

Mom's Thoughts:

The last few days have been rough for my poor child, so it's been tough for me to find time to blog.  Today seems to be better - she didn't come off the bus and dissolve into a panic attack, and said the day was pretty good.  Still not great, but pretty good.  So I'm happy.  Last night she was able to get through her tennis lesson, get her shower and finish all her homework; I'm hoping for the same tonight. 

This week, I'm not sure how much of it is OCD that bothers her or how much is symptoms of general anxiety and panic disorder.  We have yet to have a "real" diagnosis to hold on to.  This is something I'm going to address with her therapist next week. Last week, I asked about CBT and she her answer was "Well, when you've been thinking a certain way your entire life, it can be really hard to just change it."  What the heck does that mean?  From everything I've read, isn't that what we need to start working on?  Isn't that how you combat anxiety and OCD?  I've got to press her on that issue next week.

After just 3 sessions, I'm not 100% sure the therapist is the right person for the job.  We'll see.  We are going to the GP tomorrow to discuss medications again.  She's been taking 60mg of Paxil for almost 2 weeks now, and has been on Paxil for 2 months.  So far it seems to take the edge off sometimes, but doesn't work as well as it needs to.  This is a bit exhausting, all this back and forth between doctors and medications, with seemingly little progress.  I've got an appointment with a psychologist for her, but the earliest we could get in is April - almost 3 months away.  Sigh. 

The Beginning...

Mom's Thoughts:

My daughter Elizabeth has always been a somewhat anxious kid.  When she was very small, she hated getting dirty most of the time.  She would pitch a huge fit if something spilled on her pretty dress - a reaction way beyond what my younger two daughters would have done.  She hated sand at the beach, getting her hands dirty, things like that.

She was also easily frustrated.  If she colored outside the lines or couldn't quite reproduce a picture, she would burst into tears and tear it up.  "She's a perfectionist," I'd say to myself, and try to downplay things so she could see it was no big deal if she spilled PB&J on her dress.  At times, I blamed myself - I was obviously sending her signals subconsciously that things had to be "just so" or she wasn't good enough... wasn't I?  Isn't family environment to blame for things like that?  It didn't matter that I thought I was pretty laid back - I must be making some kind of mistake.  

In elementary school, she showed signs of having test anxiety, even though she is very smart, a very hard worker and always made good grades.  Again, I chalked it up to perfectionism.  We did kid yoga and soothing visualizations.  All the while, I pushed her to face her fears and try new things, even if it was uncomfortable for her.  Girl Scouts, swimming, tennis, soccer, volleyball, drama, chorus, piano.  She was a trooper - went outside her comfort zone and tried them all.  Some she liked, some she didn't like but stuck with them until she did, and others she quickly abandoned - just like every other kid I knew.  She excelled in school and sports, and made a few good friends, even though she generally distrusts people.  I always felt she had the ability to do even better than she did in several areas - sports, for example - but she doubted herself constantly.

We went along well like this - my husband and I figured out who she was and how to best deal with her anxious nature.  She learned self-control and began to let things go a bit.  We moved when she was 13 - a tough time for anyone.  She wasn't happy for about a year, but did as well as possible and adjusted in due time.  All was well into high school... her grades were good, boys not in the picture yet, and she made some friends.

Until about September of 2012.  She had just started 10th grade.  She began crying at night, having a hard time falling asleep.  "Hormones," I nodded sympathetically, "our women have strong hormones."  Then one night I heard her up about 1:00am, pulling clothes out of her closet.  I went in to see what was wrong and found her very agitated, cleaning her closet.  "It's such a mess," she said, "I have to clean it!"  "Not now!" I said sternly, "It's 1:00 in the morning.  You have to get to bed - you have to get up at 5:30 for school!  It can wait till tomorrow."  I was not taking no for an answer - I pulled my best mom voice out and made it clear we were not negotiating.   She cried and became almost frantic.  "It's not clean!  It's not good enough!" she kept saying.  She was hysterical.  That's when I knew this wasn't hormones - I'd never seen anything like this.  Once she calmed down about an hour later, she agreed she needed help.  She was exhausted.

We saw the doctor as soon as possible and he diagnosed her with GAD, Generalized Anxiety Disorder, and put her on Celexa.  It helped for a couple of weeks, and then the anxiety attacks (mostly late night) came back as strong as ever.  We upped her dose, and finally changed her to Paxil.  It was a very, very difficult transition - something we never want to experience again.  If you are changing or coming off an SRI, I recommend you do it very slowly.  She's doing moderately well on Paxil, but she was still having 3-4 anxiety attacks a week so we've recently increased her dose on that as well, to 60mg. 

At the same time, we noticed symptoms of OCD for the first time.  How had we missed it??  Chapped, dry hands are a hallmark of OCD.  How many months had we been trying to find just the right lotion, topical steroid, etc. to heal her "eczema?"  Duh.  She finally admitted she'd been washing her hands multiple times in a row, many times a day.  After the bathroom, before eating (OK, those are normal times,) after using the keyboard at school or home, after touching her belt... what??!!  OK, a bit odd there for sure.  But she can't help it.  We missed it - but heck, she's a teenager.  I don't sit around watching her wash her hands.  She's a big girl - she can take care of that stuff on her own!  But once we started talking about it, other things we didn't know she was struggling with came out.  Compulsive cleaning (duh, mid-night closet cleaning, my highly organized pantry - OK, so I didn't hate that, I admit it,) and so on.  Most disturbing to her and what likely causes some of the anxiety/panic attacks are some of the more violent thoughts that come to her and she can't get out of her head, like something bad is going to happen to someone, and somehow she is at fault.  I didn't even know this was OCD, but it is.

So, there it is.  It's a beginning for us, and that's how it has started.  We have so much more to learn, but we've come a long way already.  The best resource for us so far has been Talking Back to OCD by John S. March, MD, a Duke University psychiatrist and researcher.  He has given us the tools to begin CBT and start getting rid of "King Kong's Bitches."

4 Months In...

Mom's Thoughts:

 About four months ago, my family's normal, sports-and-school-and kid-centered suburban life was rudely invaded by some most unwelcome intruders - OCD and Anxiety Disorder.   The victim?  My 15-year-old daughter.  And well, the rest of us too.  Her dad, her sisters, and me.  Since then, we've started the circuit of doctors, medications, therapy visits, CBT - Cognitive Behavior Therapy, and my now almost obsessive web-surfing research to try to find a way to shake these bullies off my daughter's back.

I've found a few nice blogs on the subject, and some resources I can chase down (so few in my area, unfortunately,) and a couple of books and articles that have been helpful, but I still wish there was more discussion out there - helpful tips, hopeful stories, words of encouragement from moms and teens to each other.   Heck, there's more out there about how to make cake pops look and taste fabulous - now that's useful stuff!  I hate stigmas and hush-hush behind-the-hand mumblings about "taboo" topics like (whisper) "mental illness," so this forum is perfect for me.  Get it out in the open and it loses it's power to eat you up.  Yeah, baby!

So, my daughter bravely decided she really wanted to start a blog about her experiences - part self-help, part helping others.  I will also write about some about my experiences being her mom - adding head researcher, pharmacist, therapist and cheerleader to my other, more typical duties (head chauffeur, cook, maid, nurse, ATM, etc.)  I hope I can add some links to other helpful resources and blogs as I find them.  Oh, and I'll explain all about "King Kong's Bitches." 

If you are struggling with this issue or others like them as well, God bless you.  God bless us all - we're going to need it!  :-)