Friday, April 30, 2010

Free Treatment Program for People with OCD in the Philadelphia, New York City and Connecticut Areas

No-Cost Treatment Program for People with OCD

A Multi-Site Study for people in Philadelphia, New York City and Connecticut Areas from the University of Pennsylvania Center for the Treatment and Study of Anxiety

  • Are you taking medication for obsessive-compulsive disorder?
  • Are you still having bothersome symptoms?
  • Are you interested in receiving no-cost treatment?

U/Penn's Center for the Treatment and Study of Anxiety is offering a treatment program for people who have obsessive-compulsive disorder and are currently taking certain medications for their OCD but still have unwanted symptoms.

If you are in the Philadelphia area, please call 215-746-3327. Greater New York Metropolitan area, please call the site at Columbia University at 212-543-5462. There is also a center in Connecticut. Learn more about this OCD research treatment program...

Tuesday, April 27, 2010

Knitting Myself Together

Knitted brain
I learned to knit shortly before I began treatment for my OCD, and I fell in love with the process of creating something with sticks and string. When I knit, I am more likely to stay in the present moment, anchored by the motion of my hands and the texture of the yarn. At first, I had to fight the perfectionist voice telling me I'd never learn, but in fact I did learn, especially since the woman who taught me to knit told me that there are no mistakes, only "design features." She taught me to recognize my knitting "mistakes" and once I could "read" my knitted work, I could figure out how to correct it. I think this is true with many things in life--if I flee from looking at what is going on, how can I change it?

Knitting helps me with my social anxiety. I joined a knitting group, and I find I can participate more easily in conversation while knitting, and we have a common topic to discuss, and knitters tend to be really cool people!

Knitting also gave me something to do when I went through a spike in my hair pulling,. I'd always found running my hands through my hair soothing, and pulling out the gray ones, and when my anxiety accelerated in anticipating seeing my father, I pulled to the point of making a bare spot on the top of my head. Knitting was soothing, and also kept my hands out of my hair.

I don't make anything that has to fit. I don't knit sweaters or complicated lace. I could knit plain garter stitch forever and probably be happy, as long as I have interesting yarn to play with. I knit scarves for ship workers through the Seamen's Church Institute, which is very gratifying, knowing my scarves help keep someone warm.

Any knitters out there?

Related Sites:

If you want to try knitting, a great source of information on knitting is found at the social network for knitters, Ravelry.

Trichotillomania Learning Center for information about hair pulling and skin picking

Friday, April 23, 2010

Mindfulness and OCD: Full Catastrophe Living by Jon Kabat-Zinn

Full Catastrophe Living by Jon Kabat-Zinn was one of the first books I read that helped me to observe what was going on in my mind, and not become the thoughts.

I was on vacation with my husband in the summer of 1999. I dreaded trips and the spike of anxiety that came with them.
Unfamiliar surroundings + free time + belief that I didn't have any right to enjoy anything + belief that if I did enjoy something, then something bad would happen=high anxiety. I came across Kabat-Zinn's book as we were checking out a local bookstore. Something about the title resonated with my sense of impending doom. I started reading that evening.

We went to visit old friends who lived on top of a mountain. As I sat in their living room, watching hummingbirds hovering at the feeder outside the picture window, my eyes glanced down at my arm, and a mole which I had fixated on the past suddenly became the total focus of my attention, and knocked my heart up into my throat. I excused myself and went into the bathroom, and examined the mole. I felt my knees sinking, a cloud of dread blocking out all peripheral vision, reducing my consciousness to the mole.

The observing part of myself saw how quickly the anxiety came, like an injection, and how much I hated it. Kabat-Zinn helped get me back in the room, back into a 3-D world. The present moment is all we have. If we exile it into trying to know the future(is this mole cancerous? Will my anxiety ever go away?), we are losing our lives. I went back into the living room to watch the hummingbirds. It wasn't like a conversion experience or magic, just a glimmer of being more than my anxiety and obsessions. It sucked having the wind knocked out of me by anxiety. I felt tentative, vulnerable, sad. I felt weak. And yet, my observing self was alive, and hanging on somehow.

Tuesday, April 20, 2010

Core Beliefs Matter in Treatment of OCD

Cognitive Behavioral Therapists often refer to "Core Beliefs" about self and the world. These beliefs shape everything we do, including Exposure Therapy for OCD. These beliefs matter.
  • I must be perfect or I'm a failure and therefore worthless.
  • I must do everything right on the very first try.
  • I must never make a mistake.
These beliefs are on auto-pilot. They guide my actions before I even realize it. OCD feeds on these beliefs, and uses every opportunity to remind me that I shouldn't do the things I fear, or do my treatment, because the stakes are too high. Another bit of CBT jargon is "Feared Consequences," and mine are dire.
  • If I make a mistake, this will prove I am worthless, and I will have no hope of peace or joy in my life.
  • I will implode from the pressure of my defectiveness.
  • I will go crazy from the anxiety.
Leonard had quite a lot to slog through with me to get to the point of doing Exposure and Response Prevention. ERP sounds daunting enough--"Do what you don't want to do in order to get better,"--without adding "And do it perfectly the first time." ERP works by taking it step by step, starting with something tolerable and moving up a ladder or hierarchy of feared actions. Contending with the a harsh critical voice yelling, "Whatever you do isn't enough" paralyzed me at first.

What are your core beliefs? Are they true for everyone, or only for yourself?

Monday, April 19, 2010

Relationship OCD: Fear of Choosing the Wrong Person or Gender

a guide to uncertain relationships
My 21st anniversary of being with my husband is coming up. I remember our 3rd anniversary, as we sat on the floor of my dorm room, and I struggled to tell him my fears. I had just gone to a presentation by a "feminists against pornography" group, with a slide show of violent images found in magazines, and the images were stuck in my head. I felt a claustrophobic dread that I would always be trapped by these images, a barrier between me and living my life with any peace or joy.

I had been reading a book on women's friendships, and combined with the scary things I had just seen, my OCD went into overdrive trying to figure out if it was safe to be in a relationship with a man, whether I was making a mistake, showing extremely poor judgement. As my anniversary approached, the obsessing intensified, and permeated all my thoughts and feelings. Was I putting myself in danger? Was I stupid? Was I wrong? Would this man betray me or hurt me?

It's hard enough to have these questions as a 20 year old, in any context, but in the context of OCD, I felt crazy. My first date with this man was to hear a feminist folksinger. I had never met anyone who listened to me like this man did, and took my thoughts seriously. He was compassionate. But my OCD wanted absolute certainty that he wouldn't become a monster. My best guess would've been that no, this was unlikely, but the OCD whittled away at this knowledge, kept demanding I figure things out.
Maybe you should be with a woman? That would be safer. If you stay with this man, you are betraying your gender. Are you sure you feel something for him? Keep checking on this. Any sensations? You are so tense when he touches you, obviously this is a sign that you need to be with a woman. So many horrible things have been done to women by men. You'll become part of that. You will be in collusion and contaminated. What if you stay with him, but you are actually a lesbian and you will lose any chance of happiness?
So, there I sat on the floor, on my anniversary barely able to speak, crying, and my love thought I was breaking up with him. This was the essence of OCD--I didn't want to break up with him. I just wanted the anxiety and intrusive thoughts and endless exhausting dialogues in my head to go away, and to know for sure I wasn't making a mistake.

There's a lot this 20 year old didn't know. She didn't know she had OCD. She knew she was anxious, but assumed that was a sign of her own defectiveness. She didn't know that OCD attacks what we hold dearest, what cuts right to the core of our identity and self. She didn't know that if you constantly check to see if you are feeling anything, you will mostly feel anxiety and fear. She didn't know that some things are incomprehensible, like the violent acts done to some women by some men.

I'm glad that somehow I made the decision to stay with the man who is now my husband. That took a lot of courage, since it meant trusting my own judgment and living with the whole host of anxiety-provoking questions, with no support for dealing with my OCD.

Friday, April 16, 2010

Things that Help: Writing my thoughts down

How to put your thoughts on paper- Front Cover
One my blogger friends wrote a post about the notebook she keeps of all her symptoms, and how she wishes she could throw it away, that it's not a journal but a type of compulsion. I have a whole collection of dayplanners full of notations about body symptoms, plus charts I sketched out on big sheets of paper to try and figure it all out. I felt anxious if I "lost" a symptom--couldn't remember when it started or what it used to be like, and I felt compelled to document it all. Logging symptoms can be useful in some contexts, but in the context of OCD, it can be a ritual.

When I started treatment with Leonard, he suggested I write down my obsessive thoughts, as a way to recognize that they are thoughts, not facts, giving myself something breathing room, some distance. I was still dealing with remnants of an OCD meltdown that drove me into treatment, so I started writing thoughts down, even though the perfectionist aspect of my OCD threw a fit, "Are you sure you doing this right?" It was a fascinating revelation when I realized I could just write that thought down as well.

I'd done thought records in the past where the assignment was to dispute the thoughts, but this would quickly bog down in self-loathing of my perceived inadequacy in thinking. But writing down the thoughts and simply labeling the thoughts wasn't as scary, because *I* was the observer. Leonard likes to say that I've never been gone, that I'm in there, that my OCD thoughts do not define me, and I am not defective.

Everytime I write the word "Thoughts" at the top of a page, and then begin with quote marks, I feel freedom to just observe, rather than getting into a battle that usually ends with even more obsessive thoughts than when I started. Some labels became very familiar, "critical voice," "self-loathing," "figuring out," "retracing," and I had enough support from Leonard to risk looking at my thoughts without spiralling into even more self-loathing.

Thursday, April 15, 2010

Part 5: Feeling it in the jaw: Side Effects of Medication and OCD

It takes courage to start medication if you have health anxiety. At the time I didn't feel brave, but I had the good fortune of a husband who told me I was brave. There was some relief in making the decision to start an SSRI, rather than going back and forth indecisively, but in OCD fashion, a whole new area of opened up for obsessing. The first week or two on half a pill was anti-climactic, and oddly disappointing since the flip side of fearing instant bad changes is the hope for instant good changes.

My psychiatrist moved my dose up to a whole pill, and one morning I noticed my jaw felt tight. I'd had jaw pain in the past, and this was a "health anxiety hot spot" for me. I became intensely vigilant of every sensation in my jaw, and kept checking it, asking myself if it still hurt, which escalated my panic, because yes, it still hurt. I did a search in a medical database, and found a handful of case reports of jaw pain as a side effect of ssri's. My OCD was all over this--"How do I know for sure this is a side effect? Am I being oversensitive? How do I figure this out?" Finally I took the plunge and called my psychiatrist, no small feat since phone calls were hard for me.

She was at a conference, but returned my call that evening. Her compassion and thoughtful response was incredibly helpful. She asked me about the information I'd found, and said to send her the abstracts, because she'd like to read them. Although she couldn't say for certain if it was a result of the medication, she advised going back down to half a pill for a week or so. Her ability to respond with a middle path was a great model for me.

The medication was helping, so I was willing to stay with it and see if the symptoms abated. It's extremely challenging to practice trial and error and keep an open mind when you are suffering. The human desire is to find a solution NOW. Backing down the the dose before trying again with a whole pill worked. The jaw pain eased, especially after I took basic self-care actions. I got so stuck in checking the pain at first, and being afraid I was "crazy" that I didn't even think of laying off crunchy stuff, or avoiding biting into things.

Related Posts:
Part 1: OCD and Medication Decisions
Part 2: Starting Medication while Struggling
Part 3: The Limits of Research in Medication Decisions
Part 4: My First Prescription for SSRI's
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Tuesday, April 13, 2010

Knowing when to Stop

Green Lake depth contour map, 1938
Yesterday I took a walk at lunch in beautiful spring weather. I went a different route and realized that the streets cutting back toward work were all no outlet, and if I kept going, the next several blocks were all no outlet as well. I actually turned around and went back the way I came. This goes against the gut level desire to "finish" my walk, to do it right the first time, to never turn around, but affirms the wise part of my mind which sees that the "finishing" comes at a cost of exhaustion and being late.

I have come a long way. 7 or 8 years ago, my husband was out of town, and I had very little experience with this, since he'd been afraid to leave me alone with my anxiety, I decided to go for a walk at a local park, also on a lovely spring day. As I started to walk along the lake's edge, I started obsessing about when to turn around and go home. Non-OCD considerations would've been, 1)I'm tired 2)It's almost lunchtime 3)I have other things planned to do later on.

I'd been feeling freaked out about my husband's absence, and OCD compulsions have an anesthetic quality that I had used as a way to cope with painful feelings for so many years. So here I was, walking around a lake, getting more and more tired, telling myself that surely I was almost at the turning point in the path and would be headed back to the parking lot, and I needed to keep walking, because the thought of turning back filled me with an anxiety.

A remnant of my saner self pointed out I had no map, no idea of how long the walk around the lake was, that my feet hurt, I had no water, and no hat in the sun, but my OCD world constricted to one foot in front of the other foot. I was sweating yet chilled at the same time. I felt a surge of envy when I saw other people walking the trail, seemingly calm, out for a "walk" not an exercise in following a random thought.

There are points in the middle of an OCD compulsion where I am acutely aware that my actions are compulsive, and yet feeling an urgent need to continue in order to ward off the even more acute anxiety. When I finally limped to my car, my muscles were seizing up and I was in a state of utter self-loathing. Later I discovered that the path around the lake is 7 miles. 7 fricking miles. Looking back I can feel compassion for the intensity of my anxiety, but at the time I took this a sign that I was truly defective.

Thursday, April 8, 2010

Delicious Ambiguity

Gilda Radner

I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. -Gilda Radner -actress and comedian (1946-1989)
This quote was the thought for the day at A.Word.A.Day last week. I looked it up and it is everywhere, usually attributed to Radner's memoir, It's Always Something, which she wrote in 1988 when her doctors believed her ovarian cancer was in remission.

About 15 years ago, I was a teaching assistant for a public health class. The professor had assigned the students to read autobiographies about dealing with illness, and I had at least 10 papers to read that were in response to Gilda Radner's account of her struggle with ovarian cancer. By the time I was done, I couldn't sleep, and spent much of the night pacing, and drinking a glass of water every 1/2 hour, in case the pain in my stomach was food poisoning, and I could wash it out. I had the fear that by reading about ovarian cancer, that somehow I would get it.

Rationally, I knew this wasn't the case, but I felt contaminated with superstitious dread, mixed with sadness about Radner's suffering. Ovarian cancer is scary enough without health anxiety, since it is usually has subtle symptoms and is often only discovered by accident at a late stage. 5 years ago, an in-law of mine had a series of strokes, which turned out to be caused by ovarian cancer. She warned me it was because she never had children, and I'd better be on alert because I didn't have children either.

Some things are out of our control as human beings. Some things just suck. OCD warns me to never accept this, even though this ultimately erodes my life. If I am choosing to believe the seductive promises of OCD that if I keep compulsively researching and monitoring my body, I will not get ovarian cancer, I am believing in a lie. OCD will grab any grain of truth, and spin out of control. Women do need to pay attention to their bodies. It does suck that some doctors dismiss women's observations of their bodies. There is no effective early detection test. But OCD is promising a "perfect ending" and that is not possible. I wish it were. I still find Radner's account grievously infuriating, sad and tragic.

That this woman could say the following, even after her suffering, is something I still struggle with:
Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

Friday, April 2, 2010

Good Friday and Scrupulosity

Igreja e Antigo Mosteiro de São José ou da Esperança, Évora, Portugal
I confirmed my faith on Palm Sunday some 30 years ago, and then had first communion on Good Friday. OCD can infiltrate every aspect of your life, and the term for religious and moral obsessions is scrupulosity. Ironically, from the outside no one would ever suspect I had such struggles and turmoil about perfectly pleasing God. I was at church constantly. During Lent I went to every Wednesday night service and every night of Holy Week Services. I wrote prayers and devotionals. I took great pains to never hurt someone's feelings. I was quiet, compliant, conscientious, studious. I didn't swear.

This made my confirmation difficult, because as I knelt down to receive the blessing from the minister, obscenity hurtled into my mind. Suddenly, I was thinking words I would never say. I desparately wanted them gone. I agonized over what this meant about me, and how to make them stay away. I had been looking forward to my first communion, and yet, the first thing I thought of was "Will the thoughts come back?" which immediately brought the obscenities to mind in the self-generating way that OCD has. I couldn't be in the room, in the sanctuary of this church, because my OCD was compelling me into the future.

Existential questions heavy laden with intense anxiety and fear that I was doing everything wrong. Did I feel the "right" way during communion? Did I enjoy writing prayers more than loving God? How can people exist without being Christian? How do they get through life? Would God really reject them? I wrote long journal entries trying to figure this all out, until the point of exhaustion. In my heart, I had a passionate longing for God, and a sense of God's presence, but my constant analysis of every thought and action obliterated the possibility of comfort and peace.

Finally, in my 30's I stopped going to church, because the waves of compulsive figuring out of sermons, and fears of being imperfect and therefore damned and being afraid that if I couldn't figure out the meaning of suffering, or whether Christianity was the only way, or whether God was good, that I would disintegrate from the anxiety of these unanswered questions. I want to honor the heart of the girl I was, who loved God, but I'm still afraid.

Thursday, April 1, 2010

Dialogue with OCD

Certain Death if Entered
Signs like this one warning that "Certain death if entered" are rare. I had a session yesterday with my therapist and we did role playing of a dialogue between my treatment and my OCD, relating to my low hemoglobin and taking iron. I got to be the treatment and Leonard was the voice of my OCD It went something like this:

OCD: How do you know that taking iron is enough? Shouldn't you be researching this?

Rx: I found out what I need to know for now. If I do my websearching, I will feel worse.

OCD: Well, if you miss something, and it leads to your death, that will be even worse. Aren't you being neglectful and lazy in not researching more?

Rx: When I listen to you, I don't have much of a life left anyway. All my time gets sucked into searching. There's no website that will definitively tell me what is going on with my body.

OCD: Doctors do miss things you know. Maybe just do a little bit of searching.

Rx: That's a red flag! Anytime I hear "Just a little" or "Just one more site" or "Just one more hour," I know it's a trap and I will end up being on the computer for hours or days.

OCD: You are just parroting what Leonard has told you. What does he know? He could be wrong, and you could die.

Rx: Yes, this is scary. Leonard could be wrong. Maybe I do need an endoscopy right now, and by taking iron for 6 weeks and retesting my hemoglobin I could be missing valuable time. But the last time I melted down with active OCD, I had numerous tests and my anxiety kept ratcheting up with each test, and I couldn't function. Every test has its own potential dangers.

OCD: You don't really know anything. How can you go through life so unprotected and uncaring about your well-being? When people find out you caused your own illness through neglect, they will reject you.

Rx: You twist everything around. The people in my life who love me would be sad if I was diagnosed with cancer, but they wouldn't be punitive like you are. My rituals do not protect me, as much as you warn me they do. We are human, and cannot solve every issue instantaneously and in fact think less clearly when frantic.

At this point, Leonard stopped the dialogue. He said that he was digging deep to find things that would highlight my strengths and weaknesses in dealing with my OCD. It was scary, and helpful at the same time. The part where he said I was just repeating what my therapist tells me was hard. All I know though is that when I get immersed in my OCD, it erodes my life. This is my own experience--not just what Leonard says.