Lists

As of yesterday, I've been on my own for a week. Mom left last Monday, and it's good to be self-sufficient again. Even though my rituals still keep me very limited, I don't feel like the helpless lump that I was about a month ago. There's quite a lot I want to write about in this post, and I think the content would be best facilitated by creating some lists.

I've accomplished some new (and exciting!) progress working against my OCD rituals. In the past week or so, I've achieved the following:

• Staying out of the house until 4:16
• Beginning to work on my dissertation again
• Eating more sweets (my OCD objected to candy, unfortunately)
• Completely taking care of myself, without help from Mom or Dad
• Feeling more comfortable putting effort into my appearance (wearing the clothes/jewelry/makeup that I want to)

Additionally, friends and family have offered tons of support. Did you know that my friends make up a small army of super-caring, ultra-generous, swift-acting, helper-people? Things I've received (whether tangible or intangible) include: 

• Tons of hugs, good thoughts, emails, calls, etc.
• Incredibly thoughtful cards from Kerry, Amanda, Stephanie, Lauren, Meg, Pamela and Nikki (seriously, I teared up when reading these)
• A gift from my Etsy wish list, courtesy of Lauren, that I'm anticipating with bated breath
• Coloring books (!!) from Meg
• Steven has offered Alaskan salmon that he caught
• A puzzle from Tekla
• Awesome lunch dates with Dustin, Stephanie, Amanda, and many more upcoming plans on my calendar to look forward to

Now that I'm more open about my OCD, many acquaintances and co-workers inquire about my improvement. My standard response usually alludes to how surreal things have felt, but I've been telling so many people how lucky I am to have such loving friends in my life. I, truly, would not be in such good shape and making such swift progress if it weren't for all of you. 

Frankie Says Don't Worry About Your YBOCS Score

I went to see my doctor at AustinOCD today. Every time I go into the office, he asks me to fill out the Yale-Brown Obsessive-Compulsive Scale. Commonly known as YBOCS, the scale uses a 40-point, standardized questionnaire in order to diagnose the severity of one's OCD. A score of 40 indicates the most severe symptoms,  and 0 the least.

So, during every visit to the doctor's office I re-take the survey. At my first visit to AustinOCD, I scored a 29. During today's meeting, my doctor told me that my score had dropped with each visit. Last week I was at a 26, and this week I scored 24. Because the changes with OCD recovery are so small and incremental, it's sometimes hard to tell if I am, indeed, getting better. But my YBOCS score is going down little by little. And that's a really good sign.

After we talked about my improving YBOCS score, Dr. M pointed out that despite my quickening progress, he had recorded in his notes: "She's concerned she's not doing enough work to get better." I'm assuming that this mental self-flagellation is due in part to my training in graduate school. As an academic, there are no boundaries on when and where you're supposed to work, so I usually find myself thinking "I should be working right now" during most hours of the day. Apparently this all-work-and-no-play mentality has shifted to my health! I need to learn to relax.

FAQ

My mom has been staying with me recently, and though she has a first-hand glimpse of what I've been going through, she (understandably) has questions about the manifestation of OCD. The disorder isn't realistically represented in popular culture, so there are a lot of misconceptions about it. I thought I'd write a little bit of information for anyone who might be reading this journal that has questions.

• OCD is an anxiety disorder arising because of neurological malfunctioning. Anxiety is your brain's warning system, but if you have OCD, the warning system doesn't work correctly. Therefore, you experience the sensation of danger even when you know everything's fine.
• Individuals living with OCD usually understand that their obsessions and compulsions are irrational and excessive. In TV shows and movies, OCD individuals are often portrayed as enjoying perfection, order, or cleanliness. Someone who enjoys excessive perfection or cleanliness might have Obsessive-Compulsive Personality Disorder. With OCD, however, the individual knows that their fears are irrational, but can't stop feeling afraid. They also won't enjoy performing compulsions: the only reason they do the compulsions is to relieve anxiety. 
• OCD isn't primarily about cleanliness. True, some sufferers do fear germs or dirt, and this variety of the disorder is called contamination OCD. However, other iterations of the condition might make the person fear causing or receiving harm, breaking moral codes, or getting rid of personal possessions. 
• Finally, it's often not easy to identify a person that has OCD. Frequently, when I tell someone about my disorder, they'll say "I would have never known!" or "You seem so put together!" The reality of OCD, however, is that about 2-3 million adults and 500,000 children experience the illness at any given time. Most people with OCD hide the disorder out of embarrassment. In fact, OCD has been linked to above average intelligence and high achievement. 

If you google image search "OCD brain" you can see pictures that show how an OC individual's brain works differently than those who don't have the disorder. I'm very open to answering questions from friends or family, since it's important to me to raise awareness about the realities of the illness. 

Fun Home(work)

I met with Dr. M again today for my second-ever visit with AustinOCD. We talked about my progress last week, which consisted of just "poking" at little rituals and habits that I have. He said I'm in great shape and am going at a good recovery pace. That was nice to hear because it's kind of hard to tell if I'm taking on enough. Most notably, I made it out of the house 'til 4:15 (yay!) and ate some foods that are "off limits."

I've officially discontinued the Ativan - big relief! No more medication adjustments for a while.

My homework for this week  involves two things:

• Keep "poking" at my rituals and habits (but don't try to take on too much right now).
• Find ways to be purposefully imperfect. Dr. M said that OCD tends to make you want to do things perfectly, and that going out of my way to make errors, mistakes, and slip-ups will help my recovery. He suggested things like: including typos in emails, not doing all of my makeup, or leaving out dirty dishes. 

Also, I learned that Dr. M is familiar with Alison Bechdel, one of my favorite authors. I mentioned her book Fun Home in our meeting today, and he said the name was familiar to him. Apparently, he's read her comic strip Dykes to Watch Out For. Exciting!

Optimism

I've recently discovered that securing treating for OCD is almost as challenging as battling the disorder. In the last few days I've made some progress with my rituals, but have mostly been trying to make sure all the odds and ends with my new doctors are sorted out.

Insurance. The new treatment center I'm working with is "out of network" for my health insurance. This means that Blue Cross/Blue Shield will only cover part of my medical expenses. However, the people at AustinOCD suggested I try to get an exception granted to me since they're the only real specialists in town who treat OCD. I made lots of phone calls to BC/BS, and after speaking to many corporate bureaucrats, I've created an official request for them to cover my treatment costs. The people I spoke with said that there was a good chance for me to get coverage, so I'm optimistic.

Medication. I'm in the process of making my last medication adjustment. Two weeks ago I reduced my Ativan dosage by half, and right now I'm stepping off the medication entirely. Because of the difficulty of all my previous medication adjustments, I was very (very) nervous about this final one. I've also been informed that the withdrawal from this type of chemical, called a benzodiazepine, can be particularly hard.  I really don't want to lose any of the progress I've made, so I was bracing for impact with this med cessation. My anxiety has definitely been higher than usual, but I'm staying strong to get through this last withdrawal period.

Here are some things I'm looking forward to:

• My body chemistry being in balance again so I can start working on CBT/ERP with full force
• Getting to work again on my dissertation
• Watching Dancing with the Stars tonight with my mom (she's a big fan). 
• Spring 

New Doctors!

I just got back with my meeting with the director of AustinOCD, and overall I think the meeting went well. The director of the center is Dr. M and he kind of looks like Richard Attenborough from Jurassic Park. The meeting was mostly "patient education" about OCD and what happens in the brain with this specific disorder. Dr. M refers to it as a "neurological glitch." This glitch happens in your frontal cortex, so you perceive danger where there is none.

Here are some of the other relevant things I learned from the meeting:

Medication: Dr. M discussed the medication switch I went through recently, and said that because I had such a hard time when I was starting the new medication, it might actually indicate that this particular med is going to be a good fit with my brain. It's kind of complicated, but because of something called "downregulation," when an SSRI is a good fit with your brain, it floods your body with serotonin, and so (at first) you end up producing less and so feeling worse. In the long term, though, once I adjust, it might indicate that the particular chemical in the Sertraline will help me a lot.

Prognosis: I had been nervous because when I first spoke with Dr. M he had referred to my condition as "severe." That totally freaked me out. I mean, yes, things have worsened with my condition, but it's scary to hear someone say you have a "severe" illness. He addressed that today with me - he said it sounds like the anxiety/"suffering" I've been going through is severe. However, he says he's very optimistic about my treatment based on my history with OCD and current disposition.

Rituals: My homework this week is to "poke" at my OCD - just try to change little things in my rituals. I had been trying to tackle some ritual-changing on my own, and told him I started with trying to stay out of the house later because it was such a "big" ritual and so obnoxious. He asked why I'd started with something big and suggested I try to do small things instead. He emphasized I take on modest goals at first. Especially at the beginning of recovery, he said, it's a mistake to do too much.

Overall, I'm pretty positive about things right now, but it's soooo hard to just make slow, small gains. I am impatient and want to fix every problem right now.

How You Can Help!

Because I have some of the best friends in the world, I've received lots of offers to help out. I've been thinking about types of support that would be helpful for me. If you want to help out, here are some things that would be good.

• Hugs! Big fatty friend hugs are pretty much the best.
• Cards. I'd love to have some cards to hang up in my apartment. I can get really anxious sometimes, so it would be nice to have a bunch of cards to serve as physical reminders of all the wonderful people in my life. You can send me an email or private message for my address, or you can leave it in my school mailbox.
• Lunch dates. Right now my rituals keep me housbound from around 4pm-onward during the evenings. OCD can be pretty isolating, and I don't want to get cut off from my friends. I'm going to try to schedule some lunch dates with every one to make sure that I maintain social contact. 
• Food is really good. I'm trying to put some weight back on, so I need to eat eat eat. I'll try to write a list of specific stuff that I like. 
• Jigsaw puzzles. For some reason, I've found that doing jigsaw puzzles helps me relieve anxiety and keeps me entertained. I usually buy 1000 piece puzzles at Target, Half Price Books, or a toy store, and would love to have more. 
• I also have an Etsy Wish List with pretty little trinkets.