It’s Not Just About Breasts Anymore

Pink shirts and ribbons have been battling it out against the traditional Halloween orange because as many of you know, October happens to be Breast Cancer Awareness Month.

Breast cancer awareness month is October - check yourself.

Most people are aware of this now, thanks to a great campaign.

So ladies? Check yourselves. Or have your significant other help you. Repeat monthly.

But October isn’t just about breasts and trick-or-treating anymore. In fact, it seems to be the month every movement and cause wants a piece too – many of them overlooked in the sea of pink.

It just so happens two of them are capable of firing off my hot buttons faster than my four and half year old. They also lack the publicity breast cancer has behind it, so I’m going to add my two cents.

Be warned. I am about to step on my soapbox.

October 11th is National Coming Out Day. I ranted about it last year.

My feelings have only strengthened on the issue, as I watched first hand the hate and venom spewed at a dear friend just last month. I’ll share the tale later.

What I really want to talk about today is this following week.

It is OCD Awareness Week from October 10th through 16th.

What do you really know about how OCD affects someone?

Depending on how long you’ve read my blog, or if you’ve ventured to click on two of the more popular posts listed in my sidebar, you may or may not know one of my closest friends has Obsessive Compulsive Disorder.

I have spent almost six years watching her battle this disease. She has it under control now. Mostly.

But there isn’t a cure. Every day is a battle.

Please find ten minutes of your day to read her story – it is enlightening and informative and gives you a real look at how someone with OCD views the world.

Please pass her story on to others. Share it on Facebook. Tweet it. Stumble it. Anything to show people what OCD sufferers go through.

Because while most people at least know about OCD’s existence, they only know what they are exposed to. Mostly via TV.

And most portrayals only scratch the surface, leaving a distorted view of what the disease is like.

Bobbi says I’m an OCD advocate. I’m supposed to talk on a panel this weekend at the quarterly OCD Texas Meeting about just that. (Note: if you live in Austin and are interested in attending, please visit the link).

I don’t see myself as an advocate, so much as an educator.

It is the one thing I can do to help my friend. I hope it is enough.

People say things trying to emphasize, but misinformation or incomplete knowledge show they really have no idea what OCD is about.

I have learned people with OCD have a hard time “translating” OCD into something those without OCD can understand.

So I talk about it.

My Top 10 Lists are typically funny, because they are true.

It is likely only those with OCD with “get” these.

The rest of you are likely to feel a bit uncomfortable as I hopefully correct some some of misconceptions about OCD.*

Top 10 Things People Say About OCD That Are Likely To Hit a Hot Button

The more humorous depictions of OCD by "Emma" - such as individual grape washing - bothered me, but last week they made it real when her parents showed up.

10.  “Wow. Just like Monk/Glee.”Monk was initially my only exposure to OCD. While entertaining, I learned there is nothing funny about OCD and it really dealt more with phobias than coping with OCD.

Glee‘s character of “Emma” has given new light to OCD. The character often bothered me – because her portrayal was humorous and made light of OCD. Then last week, we saw her “dry washing” – a scene that actually made Bobbi squirm because of its accuracy. Go Glee.

9.  “I wish I had OCD.” – No. You. Don’t. This was said to my friend because she receives special accommodations for test taking: more time and no scan-tron bubbles to fill. This is because someone with OCD is compelled to “check” their answers, not once or twice, but so many times they are often cannot complete a test. Having to have each bubble filled “exactly right” is another issue. Imagine if how the bubbles were filled out took precedence over if the answer was right or if you made it through the entire test.

OCD isn't about the cleaning - it's about the thoughts behind the cleaning.

8.  “At least you have really clean floors!” (said to me after I told someone about Bobbi being compelled to wash my tiled floors for two hours straight). – I responded with, “No, I have four tiles that are spotless, because she couldn’t get those four “just right” and she wasn’t able to move on to the other 100+ tiles.” This is a very common assumption people make – OCD equals a clean house.

What you don’t know, is cleaning the house is just ritual used to make the person with OCD feel more in control. The “why” behind it varies from person to person on but it can vary from morbid obsessions (“someone will die if I don’t do this”), to “I’m a horrible person”, “I will go to Hell”, or other fears.

Who wouldn't love to have their closets organized like this?

7.  “I’m a little OCD. I like to organize.” – I know this seems sympathetic. We have all have ticks or like to have some things just so.

That is NOT OCD. Can it be obsessive? Yes. Can it be compulsive? Yes. Can it piss you off because your spouse moved something into the wrong spot? Yes.

Unless these cleaning compulsions are taking over your life, interfering with job, appointments, taking care of yourself or your family, then you do not have OCD. It is a mental disorder. You cannot have a “little” of it.

6.  “You must love to clean.”– This ties into #8. OCD is not about loving the act of cleaning. It is not even really about cleaning at all. It is about ritual and fear of contamination. The main thing you don’t see in media about OCD is the fear. Fears and anxiety are the “whys” behind the cleaning.

The night I was in labor with my daughter, Bobbi cleaned her door jambs – for three hours. Her brain was going through worst case scenarios about me, but cleaning the same spot was a ritual to calm her and make her feel in control. What she’s thinking is, “If this door jamb is perfect, Kelly will be fine. I have to have this perfect.”

Does this image bother you?

This really does bother someone with OCD. What you don't know is why.

5.  “Why don’t you just stop?” – I admit, I thought this once. My carpet was obviously vacuumed, why couldn’t Bobbi stop vacuuming?

“The lines aren’t straight. If they aren’t straight they aren’t right. If they aren’t right, they’re wrong and people will die.”

My non-OCD brain couldn’t understand the connection between the lines on a carpet and the car crash she imagined happening if they weren’t straight. She couldn’t stop herself, because to stop meant she would make this thought come true. She wanted to punch me when I forcibly removed the vacuum cleaner from her.

Someone with OCD cannot just stop.

4.  “That doesn’t make any sense.” (in reference to needing to perform a ritual) – As a non-OCD sufferer, I get how true this is. To us, we cannot see the connection between a spotless tile cleaned 36 times and how it can prevent a car crash or other fear. To someone with OCD, it is how they struggle to have power and control over these thoughts. To them, it makes perfect sense and even if they recognize it isn’t rational, it is very hard to follow the rational thinking over the compulsion.

3.  “Why don’t you do something about it?”– Chances are if the person is capable of admitting they have OCD and you’re actually seeing them in public, they are treating it. They’ve already hit rock bottom, found out what was wrong, and are fighting back.

Treating OCD can involve any combination of inpatient treatment, therapy, exposures, and various cocktail blends of drugs to try to get it under control. It takes time. There are setbacks. There are good and bad days just like we all have. So instead of asking “why”, ask “what can I do to help?”

Someone with OCD will wash their hands more than you think.

Most don't wash their hands just once - it's a ritual pattern.

2.  “(Insert laughter over person with OCD excessively cleaning/counting/washing hands.)” – It is easy to turn OCD compulsions into comedy on TV because to those without OCD, the rituals we see are over-the-top ridiculous. What they don’t show is the cracked, bleeding skin because someone had to wash their hands for 42 seconds and repeat 42 times before they could leave the bathroom.

That’s a little over 29 minutes of hand-washing each time they had the need to wash their hands. Having to repeat rituals is how someone with OCD will become nonfunctional and unable to truly live. I’m not saying you can’t laugh at a TV show, just remember you’re only seeing a fraction of what is real and the reality is about as funny as breast cancer.

Which is to say, not at all.

Someone with OCD already feels crazy. Don't tell them they are.

Someone with OCD wants to wear the T-shirt, but a part of them fears they really are crazy.

1. “That’s crazy.” (referencing rituals or OCD thoughts) – Funny thing that word: crazy. While we’ve come a long way in education about a lot of things, OCD still remains very misunderstood, and therefore the people who have it are as well.

By saying “crazy”, you’ve just validated someone with OCD’s deepest fears: they are crazy. Yes, it’s a mental illness, but they are by no means crazy. It is a disease.

Like breast cancer.

It just attacks the sufferer in a different way, and if left untreated, can suck their lives away into a succession of rituals where they never get a chance to really live.

OCD sufferers are some of the smartest, most intelligent people I have ever met because they are always seeking knowledge to keep their brains busy from dwelling on their less rational thoughts. They don’t relax like the rest of us because an idle mind is one capable of going into an OCD loop.

So next time, say “I don’t understand” or “I can’t imagine what you’re going through.”

But never, ever, use the word “crazy”.

*I am not perfect. In fact, I probably asked or spoke many of these exact phrases to Bobbi as I learned about OCD – I had a newborn baby and cannot recall which faux pas I did. I cringe now at how my lack of knowledge unintentionally hurt her on multiple occasions and want to keep others from doing the same thing to those they care about.

I still screw up but I’m always trying to learn more about OCD.

For now, I hope what I do is enough.

You can read what it was like for me from a supporting perspective, watching her battle with OCD here.

UPDATE: Bobbi was curious how Twitter was talking about #OCD several days later… It pushed her hot buttons and resulted in an informative rant about more OCD misconceptions. PLEASE READ.

This post was also shared here.

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About Kelly K @ Dances with Chaos

Kelly K has learned the five steps to surviving of motherhood: 1) Don't get mad. Grab your camera. 2) Take a photograph. 3) Blog about it. 4) Laugh. 5) Repeat. She shares these tales at Dances with Chaos in order to preserve what tiny amount of sanity remains. You can also find her on her sister blog, Writing with Chaos (www.writingwithchaos.com) sharing memoir and engaging in her true love: fiction writing. It's cheaper than therapy.
This entry was posted in Bobbi, Dances with Chaos, Top 10 List and tagged , , , , , . Bookmark the permalink.

65 Responses to It’s Not Just About Breasts Anymore

  1. I had a friend in middle school who had OCD I learned a lot when I had sleepovers at her house. I think it is something that absolutely deserves more awareness! Great post my friend!

  2. Sparky says:

    “They don’t relax like the rest of us because an idle mind is one capable of going into an OCD loop.”

    I have been trying in vain to convey this one to the hubby for years…his “miracle cure advice” for me is that if I would just stop and calm down, all would be well. I cannot explain why this is the worst thing I can do…why I keep frantically “doing” something, anything.

    And yes…my house is a wreck, and Monk pisses me off.

    Thanks for another great post!
    Y’know, even when things are “off” I will still sit still long enough to read your blog…you and two others. The other dozen or so get skipped on bad days.

    • Bobbi says:

      It’s funny. One of the ladies in the support group I run has exactly that saying. “Do something. Anything.” She’s recently amended it to, “Finish something. Anything.” OCD and procrastination seem to go hand-in-hand.

      My “messy” is usually other people’s “clean,” but my house is by no means spotless. Mostly because I know that if I start cleaning, I’m likely to start looping and do something like scrub doorjambs for three hours. *blush* That’s not to say that you NEVER see “spotless,” but I think that stereotype does more harm than good. It’s so prevalent that I’m actually afraid to have people see my house in any state of mess, because I obsess that they’ll think I’ve been lying about having OCD.

      Silly OCD Badger.

    • Sparky – It has taken years to “get it” and a lot of the knowledge came from those without OCD: her therapist, last year’s OCD Texas conference.

      You may feel free to forward this post to your husband and anyone else you’d like to understand. Bobbi tells me I somehow “get” OCD in way many do not and can somehow explain it to those who don’t have it in an accurate way. A rare thing I’m told.

      Hence this post.

      Your words mean a lot. Thank you.

  3. John says:

    I read the title of this post and just anted to say “it’s ALWAYS about breasts,” but you’re very right – OCD is not a laughing manner, no matter how easy it is to make fun of (it’s really unfortunate that mental illnesses that aren’t understood are made fun of, endlessly).

    • Thank you John, for going there and making the gratuitous male comment about breasts.

      I’d hoped it would be you. 🙂

      I do think breast cancer awareness is very important, so you know, be sure to check out the wife – with her permission.

      And yes, it’s unfortunate most mental illnesses have at least one symptom easy to make fun of.

      Thanks for sticking through my soapbox.

  4. Liz McLennan says:

    This is an important message, Kelly. Wow. The words and phrases we use speak volumes about our true/real/misguided thoughts and prejudices, don’t they? Thanks for the reminder and the much-needed reality-check.

    • I just wanted to shed a little understanding.

      These phrases are a lot like how someone without kids will tell a stay at home parent, “Wow, it must be nice to relax all day.” They just don’t “get it” or how such an innocent comment (in their mind) can hit a hot button.

      OCD is still so misunderstood there are a lot of hot buttons hit and those with OCD have a hard time explaining it.

  5. Thanks for sharing, Kelly. You’re right, Breast Cancer Awareness does take over the spotlight. And while, yes, it’s important, so are many others. I really like that Glee allows a little humor, while showing how debilitating OCD can be and what a challenge it is to live with, work with, and in the end, show that what is an initial laugh, isn’t so funny afterall.

    • Glee is getting better at showing the reality. In the beginning, it didn’t so much.

      It’s progress, although (technically) Will’s reaction often falls into the “enabling” category not the “exposure” category.

      Example: Bringing her the unwashed fruit: exposure and good.
      Example: Sitting down next to her as she dry washed her hands and singing about fixing her: enabling and bad.

      You cannot “fix” OCD. You can only learn to control it.

      You are never cured.

      I hope they show Will “getting it” some day.

      Thank you for reading and passing on!

  6. Shari Green says:

    Wow, excellent post, Kelly. Thank you!

  7. Ashley says:

    EXCELLENT post!

    I actually ranted about this last month on my blog, because I’m sick and tired of seeing OCD used in books as a plot device or a way to add instant depth to a character. It infuriates me.

    • I had no idea OCD was the new plot device in YA literature.

      I absolutely loved your rant. I could tell it hit your hot button and yet it was still informative while showing the harm ignorance of OCD can cause, even if unintentional.

      I suddenly want to write a book with one of the main characters having OCD – not as a plot device, but to show the real struggle.

      I encourage others to read Ashley’s rant HERE.

  8. I get it. And I dont. If that makes sense. I understand how its possible to “not let go” of something once it has started or you have started with it. The importance of making things right is overpowering.
    Thanks to Bobbi for bringing it out there and to You Kelly for also being an advocate.
    As “funny” as it might seem on TV, it is something serious that needs more attention than what it is currently getting.

    • It is getting a lot more attention lately. It wasn’t too long ago that no one outside of mental health professionals even knew what OCD stood for.

      The problem I see most with this new exposure is misinformation: OCD is portrayed as minor, quirky, or funny. Rarely is it ever shown how it sucks away a person’s life, to the point they are non-functioning and seek help.

      That is why I keep speaking about it, even if it’s commenting on a blog post where someone says “I wish I had OCD so my house would be clean.”

      That is proof the person does not even remotely “get” what OCD is about.

      We all have our little obsessions about having things right. It’s when they create compulsions and interfere with life that it becomes OCD.

      Thank you for reading, and please feel free to pass it on to others, to help spread the correct information about this often trivialized disease.

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  11. TheKirCorner says:

    This was an amazing and wonderful look into the life of someone with OCD. Bobbi and others with this disease will benefit from this thoughtful and truly considerate portrayal. I am going over to read Bobbi’s story now.

  12. Trish Loye Elliott says:

    Thanks for bringing OCD into the light. I admit I’ve never met anyone with this disease but I did see that episode of Glee and the drywashing of her hands brought tears to my eyes. What an awful disease to have to battle and to do so without public knowledge of what it’s truly like (but this is very true of most mental illnesses). Thank you for bringing this into the light, Kelly.

    • Odds are you have meant someone with OCD before – they just had it under control or hid it well.

      As Bobbi says, at least people know what OCD is now, and that it exists.

      That wasn’t the case when she was a child.

      But with knowledge comes misinformation and assumptions.

      And sadly stigma, as with many mental illnesses.

      “Why don’t you just stop?”

      It is why I try to educate those I can.

  13. angela says:

    I have a friend with a (relatively) mild case of OCD. Her most common coping mechanism is making beds, and she said that it started when she was super, duper young (maybe 7 or 8). It can be hard to understand, but I think you did a great job with your list.

  14. ocdtalk says:

    Wow! I just spent an hour reading your posts and Bobbi’s story, and am awed by your friendship, your insights, and your writing……..I am so looking forward to meeting both of you this weekend.

  15. jodifur says:

    Thanks for writing this. I had no idea.

  16. Thank you for sharing this list. I really believe that most of the people who say insensitive things about OCD just are uneducated about it. I know this because I was once one of those people. But, reading and learning and thinking about it have made a difference in how I think.

    Keep educating 🙂

  17. Great post, Kelly! My OCD flared when my son was born. After his traumatic birth and my near death experience, I felt like I had lost control. Cleaning and organizing were the only things I could control: the only things that would stay right for a little while. And then I remembered that after I was raped it had flared, too. Trauma triggers it for me and the rituals are calming. I don’t worry about people dying; it’s more that the chaos feels loud. Disorder is something inexperience physically. Messes make me uncomfortable. They mean I am bad, out of control. So, yes, I have systems — and yes, my house is neat, but I have learned to get away from my house and do more productive things with my time. So I guess I have strong traits which can flare, whereas others have a more debilitating type of OCD. And I have seen that too. In beloved students. And it is nothing to joke about.

    • I have just learned more about your past in a single comment than I thought possible.

      I had no idea you had OCD. Traumas are very powerful triggers so that makes sense.

      Really, until you have seen OCD close up, it is hard to comprehend how debilitating it can be for the person.

      Which is why I try to educate as much as I can – since I don’t teach. 🙂

  18. Cheering for this. I love to see someone shedding light on an illness out of love for someone who lives with it every day. And thank you so much for the information. I did know a lot of this, but it helps to understand. I’ll share for sure.

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  21. Fantastic post, thank you. I didn’t know what this was.

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  23. prttynpnk says:

    I don’t know why we feel compelled as a society to make people listen to our useless insights about things we don’t understand or kn ow briefly from a Lifetime film- I have a friend who claims she’s ‘a little OCD’ and I want to slug her for her shallow insensitivity to a frightening illness. Thanks for reminding us of this issue. Great blog.

    • We can all have our quirks.

      You can be compulsive about things. You can be obsessive.

      But alas, too many people believe this means you have a “little OCD”.

      Perhaps you should show your friend this post so she can realize the difference. 🙂

      Thank you for stopping by and commenting.

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  25. Frankie says:

    Thanks for this post! Someone very close to me struggles with OCD. I find it infuriating when people say, “I’m a little OCD” or “I wish I had OCD.” When most people think about OCD they only think about the Compulsions or actions i.e. handwashing, checking, etc. They don’t know about the obsessions or thoughts that trigger the actions. People with OCD can also realize that they’re thoughts are irrational but still can’t help but carry out the compulsions. It’s a really intense disease and people should be educated about it, so thank you!

    • This is my biggest issue with TV portrayals: the complete lack of explanation of how most of OCD is completely hidden in someone’s thoughts and the actions are a reaction to those thoughts.

      Everyone I’ve spoken with who has OCD has known their thoughts are not rational, hence they often see themselves as “crazy” for doing things they know are irrational.

      I would love nothing more than for Emma on Glee to go to therapy and have us SEE her in therapy. Real therapy, doing an exposure of why she does some things. It could open so many eyes.

      And yes, these are hot button for those who care about someone with OCD as well. Because the ignorance hurts our friends/family, even if unintentional.

      Thank you so much for your comment.

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  27. Anastasia says:

    I get so mad when people say they are OCD just because they have to have the towels a certain way. I’m like..but can you leave your house without going back to check 32 times that they are folded the way you want them? Do you re-fold them over and over again for so long that you have not left the house? Then no you do not have OCD, you’re just a little neurotic about towels.

  28. Very interesting.I know most of us (me included) joke about being OCD. But is read a book recently about a man with OCD and the suffocating effects it has on just living a life that you and I know today. Great post.

    • Try to joke about being neurotic. Or obsessive. Or compulsive. Just try to leave the “OCD” out of it because the stereotype is very pervasive and hurts those who have it.

      There are some excellent books about OCD out there, so I’m glad you read one.

      Thank you for commenting!

  29. Mama P says:

    I never really thought about OCD much, I was one of those who knew about it, at times felt sorry for the person, or didn’t really feel anything at all. Now, I have an entirely different perspective on the subject, having a 2 1/2 year old with certain special needs will do that to you! Very informative post that I will most definitely be sharing, because your right, it’s not just about breasts!

  30. OK, Kelly….

    You’ve woken me up here. I’m guilty of referring to myself as a little OCD. And while I haven’t finished through all your links here, I can tell I’ve been a total asshat. I just tweeted this post and am going to share it on FB in a sec. Thank you for writing this, for enlightening us, for pointing out the other important things about this month (and ANY TIME!)….

    xoxox

    • I read this comment as I was sitting at the OCD conference last weekend.

      My face lit up and I had to show it to Bobbi who was sitting next to me at the time.

      She smiled too.

      She planned the event, with the theme being “Advocacy”.

      Having you do your part to spread the word, to understand how such seemingly innocent comments pass on the ignorance of what OCD entails.

      THIS is why I wrote this post.

      So thank you Erin.

      I want to reach out and hug you.

  31. Kathleen says:

    This is something I didn’t know anything “real” about until now. Thanks for that. It’s hard to see how words can be used so flippantly and people don’t realize how hurtful they can be–“crazy” in your case, “retarded” in the case of my daughter, who has Down’s. People’s understanding, or lack thereof, makes all the difference. Great post.

    • I almost used the very example in my post (calling someone with OCD “crazy” is a bit like calling those with autism or Down’s “retarded”) but I couldn’t bring myself to type it without you saying the word first.

      It just felt wrong.

      But it really gives the person with OCD the exact same feeling.

      Thank you for taking the time to read this and understand.

  32. Wow. An amazing piece, Kelly. You are a good friend despite past faux pas committed. The point is you took the time to re-educate yourself and now you’re passing that on to others. Nice work, lady.

    I don’t know a great deal about OCD but remember being very moved by episodes of Scrubs in which Michael J. Fox played a surgeon with OCD. Have you or Bobbi seen it?

    • I checked out a few clips on You Tube when you mentioned it.

      Sadly a few of them really make fun of the rituals and quirky things, since it is a comedy show.

      Only one scene was a bit more powerful, but I wish it had gone a bit more in depth.

      Thank you for pointing it out to me, Angie!

      Somehow, even though we are very different, Bobbi and I “work” well as friends.

      I was a bit sad no friends were in the support group at the conference. There were parents, two boyfriends, and two husbands. But no friends.

      This amazing woman, Heather, who was house bound for eight years came right out with it. “Most of us don’t have friends. If we’re lucky we have family to help.”

      It made me want to cry.

  33. Sara Grambusch says:

    Great post and I’m always glad to see important awareness posts on blogs! I had no idea October was such a busy month in that way.

    • October is really the month everyone wants a piece of. I believe it is also Mental Health Awareness month and Depression Awareness.

      All important issues.

      I hope some day every knows this. It wasn’t too long ago no one had heard of breast cancer awareness.

  34. Tina says:

    The one thing that I know about calming rituals is that they make perfect sense to the person who is engaging in them. There doesn’t appear to be much difference between someone with OCD engaging in a ritual and someone with autism engaging in motor stereotypy such as flapping or rocking. If it comforts the person, it’s all good, even if it is not what I would do.

    Great post!

    • Tina – You are both right and wrong.

      Yes, to the person with OCD who has calming rituals, they make perfect sense to the person engaging in them.

      However, for someone with OCD, this ritual is not good. These rituals often serve to make their belief in the thought even stronger and the rituals will deepen, get longer, until eventually the person with OCD is nonfunctional.

      Treatment involves doing exposures: doing the things they are most afraid of. Shortening and eliminating the rituals they do.

      Will it often make someone with OCD angry if you interfere in their ritual?

      Yes.

      It is part of the process to healing. Because to accept or encourage or participate in their rituals (i.e. “You have to clean your hands three times before you can hug me.”) actually validates those rituals. And they worsen.

      You can see how I helped my friend out of an obsessive thought here: https://danceswithchaos.wordpress.com/2011/10/13/ocd-loop-awareness/

      Thank you for reading and commenting.

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