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.

March 20 Status Update

So, I haven't done a recap post in a while with pertinent info about my health stuff. Here's a quick update about where I'm at right now.

Rituals: I've been able, little by little, to start pushing back against my rituals. They start around 4pm in the afternoon, but I've been working on pushing that back. Yesterday I stayed out of the house 'til 4:06! I know that sounds like baby steps but any progress is good. There are a lot of "avoided activities" that I have. But, I am able to cook and clean for myself again, and I am going to work. For some reason, my OCD also made me feel afraid to eat certain foods, but I'm incorporating lots of new stuff into my diet and am eating more.

Medication: (Big knock on wood here) It seems like we've found a good combination of meds for me. I'm on a higher dose of an SSRI called Zoloft, and another drug that amplifies the SSRI called Seroquel XR. The crying jags seem to have stopped.

Complications: The new meds that I'm on are supposed to make me hungry, and they do. I'm pretty OK with this side effect, and I'm trying to eat as much as possible. I've also noticed some uncontrolled muscle movements in my legs (small muscle jerks) that I need to speak with my doctor about.

Treatment:  I'm going to start working with AustinOCD. I'm very hopeful about working with the people there, although I'm also nervous, because it will be hard work. Thankfully, my insurance will cover part of the cost, and my parents are going to help out.

My recent flare-up of my OCD has caused me to re-think my relationship to the condition, as well as how others perceive me. Like a lot of people living with OCD (I hate to say "OCD sufferer" since it sounds so depressing) I've hidden my quirks and rituals from friends and family. Now that my OCD is more pronounced, it's a little bit harder to hide.

I've noticed something interesting about how I represent the condition to others. Whenever I do an OCD ritual in front of someone else, or whenever a compulsive behavior might seem odd to another person, I have a knee-jerk tendency to say "Sorry." Sometimes I apologize multiple times.

Case in point: at night, my  rituals necessitate I walk in a certain pattern in front of my coffee table. Mom, who's been staying with me, sometimes sits on the couch and when I walk in past her I have to ask her to move her legs so I can get by. I feel so awkward and bad asking her to move her legs, and I usually blurt out "Sorry, you're not in the way, it's just me."

Of course, there's a lot of feminist writing on the topic of women saying "Sorry" more frequently than men. It makes me wonder when and where it's appropriate to apologize for my OCD. Obviously, I didn't choose to have OCD, but I can (generally) choose how and where I give into it. Is apologizing to others just making me feel more ashamed about the condition? Is it appropriate or socially convenient?

So, I haven't blogged in a little while. Things got kind of messy as I stepped down off of the Ativan that I was taking. Apparently, the withdrawal that people experience when they wean themselves off of benzodiazepines is pretty intense. My anxiety was peaked on Sunday and Monday.

My doctor has added a mood stabilizer, Seroquel XR, to help augment the SSRI that I'm on. It made me groggy the first few days I was on it (Monday and Tuesday) but it's gotten better.

I guess the big news is that I'm going to try to start working with the Austin OCD Center as an outpatient. It's pretty expensive, and my insurance isn't that great, but my family is going to help out with the costs.

Finally, I had lunch to day with Rachel, and it felt great to get out (and also, to eat hotdogs).

Happy Sunday, blog world. This weekend has been pretty good. Mostly, my homework involved socializing. Dr. D encouraged me pretty strongly spend lots of time with my friends and family. They're my support system and also help me feel tons better.

Friday afternoon my aunt, cousin, and her two little children came into town and we had a long afternoon lunch. I was nervous because it was a Friday - recently, the weekends have been making me nervous because it's a long stretch of time where I can't get into contact with my doctors if I need to. However, I think this weekend I was less anxious than the previous weekend. This anxiousness about weekends is new for me, and quite frankly it sucks.

Yesterday was a big step because I went out and socialized on my own, without Mom! I didn't rely on Mom to drive or pay at all. I went out to lunch with my friend Tekla and ate a massive burrito. We bummed around a little bit and then I took her home. Later, I went to Target to buy this pretty vase I've been coveting. So, I guess I allowed myself to have a good thing. I rewarded myself - this is good.

Also, I went two whole days without crying. This isn't necessarily an accomplishment, per se, but an indicator of my mood stabilizing and my body adapting to the new medications. Dr. E said that my regular crying jags were probably being produced by the medication swap and my body/hormones adjusting. I didn't cry at all on Thursday or Friday. Yesterday I did get upset, though.

Sometimes I get really frustrated with the fact that I have OCD. I start to ask lots of unproductive questions like "Why did this have to happen to me?" or try to tell the universe that it's not fair for me to have this stupid illness. I suppose I'm grieving - from what I understand this kind of anger and sadness is normal. I'm just trying to let myself feel my feelings, whatever they are.

Though Wednesday was pretty difficult, Thursday (yesterday) was better. I didn't cry, and my mood was a little bit perkier. I'm still suspicious of these days when I feel more upbeat, but Dr. E says that by next week I should be having more and more of them, and my good moods won't feel like a "fluke."

As for my homework, I did something very small, but it felt really good. I took care of cleaning up all of the dishes after dinner. I put away all the leftovers, and washed and scrubbed the plates in my sink. Up until now, Mom has been doing these kinds of things since I've been largely helpless. It felt really good to take back this little chore - I felt a bit more like myself, and I felt more capable.

Also, I got a very sweet phone call from my friend Kerry, and she offered lots of kind thoughts and advice. She said one thing that has stuck with me, which is to reward myself for doing all my hard work. She asked if I was treating myself in any way, and I realized I hadn't really been doing anything like that. In some way my freedom, in and of itself, is a reward. It's such a magical feeling to be able, little by little, to get my life back.

But Kerry's right - I do need to reward myself. Some ideas that spring to mind are:

- Buying myself little presents from my Etsy wish list
- A yummy dessert
- A date with a friend
- Pretty fabric from Calico Corners
- A bottle of Champagne (when I'm allowed to drink again)
- Flowers
- DVDs of my favorite TV shows
- Visiting a new restaurant

It was kind of hard to think of ways to reward myself. That says something important, yes? I'll work on this more.

Yesterday was kind of hard for me. I woke up with higher anxiety levels, and doing my homework was really hard. I did, however, take the bus to school and stay out of the house until 4:23 (little victories!). I had initially planned to take the bus back from school as well, but I got too scared. I wasn't sure how long the ride would take, and staying out too late made me really nervous. But, I did make progress.

After I got home from work I got really scared and cried. Dr. E said that I might experience a "mid-week crash." So, I guess that's what happened. I'm trying to keep everything in perspective and remind myself that I'm still doing better than when I started on the medication. Like, that first week I went over to Tekla's house and was really nervous. I could barely stay an entire hour.

Also, I guess I should say that I need all the love and support that friends and loved ones can offer right now. Things are very hard still, and every little piece of homework feels like a battle. I would love any encouragement that anyone could offer!

Yesterday I successfully did my homework of staying out of the house until 4:15! I was also out of the house for 6 hours total. Yay! Today, however, I woke up feeling really anxious. Dr. E said this might happen. She told me that I might have a "mid-week crash," but that ups and downs in my anxiety are to be expected at this point. So, I guess that is what is happening today? My body is still adapting to the new meds and coming out of its funk.

Mostly, I'm regretting looking for information about SSRIs on the internet. I linked to the Wikipedia entry on SSRIs in one of my last posts, and the entry was all about how it's widely doubted if they even work! I did not need to hear that, internet. I'm trying to chalk it up the the internet being a weird, scary place that's not always full of the most accurate information.

Doctor #2

This morning I met with my counselor. She's a psychologist, who, for the purposes of this blog, I'll call Dr. D. Dr. D is another super-smart lady, and she runs marathons, and always wears these cute shoes that look like they came from J. Crew.

Anyway, I was talking to Dr. D today about my general malaise and how I've been feeling like my OCD really sucks and it's chronic and I'll have to deal with it for the rest of my life. Please excuse my use of a run-on sentence, but a long, smushed up list of bad feelings accurately describes my recent emotional state. She was very helpful in pointing out to me that OCD doesn't have to be chronic like other mental health issues such as Schizophrenia or Bipolar disorder. According to her, OCD can be treated and can go into remission. She reminded me that I am very high-functioning, and she hopes that my symptoms will, after I work at it, go into remission.

My homework for this week builds on the things I've been doing. 
Today: I'll be out of the house for 6 hours, stay out until 4:15.
Tomorrow: Take the bus to and from school, stay out of the house until 4:30 - 4:45.
Thursday I'll start doing the dishes again (Mom has been doing that).
Other homework includes hanging out with a friend at least once this week, and eating a yummy dessert after dinner (and allowing myself to enjoy it).

I also noticed that the leg jerking was kind of bad last night, but I'm assuming that was just because I increased my dosage of the Sertraline.

Doctor's Visit

I just met with my psychiatrist, Dr. E (who I've been calling my "doctor" in my earlier posts). She wanted to see me today to check in about how the recovery was going and see if we needed to make any adjustments. She's this shorter, perky lady who is very, very smart; so, it's very nice to see her. Also there are only particular types of women that I know who legitimately look good in pantsuits, and she is one of them.

In list-form, here's the situation:

Medication: My mood has been getting better, little by little, over the past two weeks. Dr. E says this is a good sign since that means I'm responding to the newer medication, an SSRI called Sertraline. Because I'm responding to it, I won't need to be put on an additional, heavier, medication in order to amplify the effects of the Sertraline. However, we are going to increase my dosage of my SSRI, starting today. I'm going to stay on the supplementary, short-term medication (Ativan) for the moment. Over the course of the next three weeks I'll wean myself off of that one.

Mood Stuff: I should continue to feel better, and the crying jags should start to taper off. I've been getting stuck in them only every other day or so. Dr. E says that I might have a some rough days, but that that's ok. Overall, the strings of "good" days should continue to get longer and longer.

Rituals: The increased dosage of the meds should eventually, in conjunction with my work with my counselor, help the rituals reduce in number and duration. I've had several little victories this week: I went back to work, I cooked dinner for myself, and pushed my rituals back to 5:25.

For the future: I'm going to see how I adjust to the new medication and check back in with Dr. E in four weeks.

Right now Mom's still staying with me, and she might be here for the next two weeks. I'm really grateful that she's been able to stay, even though I feel bad for keeping her here so long.

Mostly, right now I'm feeling really bummed because of something I talked about with Dr. E. Up until now, I'd been living with the assumption that my OCD was mild. Because of recent events, though, I've had to talk with Dr. E about the extent of my anxiety and she seems to think that the condition wasn't mild at all. According to her, I was, sort of just managing, and working my life around my OCD. Today in her office, I was asking (as I often do now),

"How did this happen? My OCD used to be so mild."

And she responded, "Was it really mild?"

Even a few hours a day spent performing rituals adds up. That's a lot of time. I guess I've been enjoying feeling like mine was a marginal, super-mild case of OCD. I felt like I didn't really have to think about it that much. I'm trying to come to terms with the fact that I actually have, for realz, OCD. I'm trying to stay positive about this - because my doctors know the full extent of my condition, and I'm not trying to pretend like everything is fine, they can treat the disorder better. But it's hard to admit the way I've actually been living - it means owning up to the depth of the problem.

My "homework" has been going well so far. I commonly feel two conflicting things now that the medication is starting to kick in: 1) Realization that the things I worry about are irrational, but 2) A simultaneous fear and need to perform my rituals in order to make myself feel better.

Maybe it would help if I explained my rituals a little bit. I remember reading about OCD in Alison Bechdel's graphic novel Fun Home. The protagonist, Alison, begins experiencing childhood OCD symptoms around age 10. Though each case of OCD is different, one of the compulsions she experiences reminded me of my own case:

If my day went well, I tried to duplicate as many of its conditions as possible. And if it didn't I made small adjustments to my regimen. Life had become a laborious round of chores. At the end of the day, if I undressed in the wrong order, I had to put my clothes back on and start again.

This is very similar to my experience with OCD. Repeating trusted behaviors is a variety of OCD (some others include checking, counting, or washing) and it's how my condition manifests. As much as I love Bechdel's novel, it's a little frustrating for me, as an OCD sufferer, to watch her recover all by herself. She describes her OCD as a "spell" - just a brief period of her life where she's OC (of course, this really isn't accurate, and a close reader of the novel can see OC symptoms well into her adulthood). I guess what I do want is for there to be more awareness in the general public about how debilitating OCD can be, and how necessary it is for patients to find treatment with trained doctors.

I guess I'm trying to wrestle with the fact that OCD is generally a chronic condition - it should persist my entire life. My doctors say that my recently worsened symptoms are probably a product of life stress, but even given my eventual recovery there's still going to loom the threat of relapse for, well, ever. Blerg.

So, today marks 12 days that I've been on the new medication. My doctor said that the first 10 would be the hardest, and boy was she right. I checked in with her yesterday, and she said that my recovery process seems to be kind of normal. I told her that things felt really hard right now, but she said that that was ok.

Yesterday morning, I woke up with a burst of enthusiasm. I wanted to get out of the house and go do all of the things! It was the first time since I started the new medication that I'd felt that way. Later on, my enthusiasm waned and the anxiety returned. My doctor said that this feeling was normal - our goal is to make those bursts last longer and stay around more permanently.

As for my homework today, I had lunch with my friend Amanda. I was out of the house, socializing and having actual fun! Because of my OCD, I often don't trust "good" things. That sounds a little vague - mainly I'm suspicious of things that go well, or when I'm enjoying myself, or something positive that happens in my life. OCD is often called the disease of doubt, and distrust of enjoyment is how doubt manifests for me. I need to remember that just because something good happened, that is no indication that something bad is about to follow. 

I also had a check-in with my counselor yesterday, and she gave me some advice I'm trying to think about. She said that my recovery needs to be gradual. She told me an analogy about someone with chronic pain: for someone who's suffered with lots of pain for a while, having a brief window with no pain might make them want to go out and jump, run, or do cartwheels! But then, they'd probably be in a lot of pain afterwards because they did too much. She reminded me to pace myself, and to have patience. I can certainly capitalize on the bursts of good feeling, but I should stick to my little bits of homework and let them build gradually.

This is a blog about my recovery from OCD. I thought it might help for me to start of with some basic details about my condition, and how it has changed in the last month.

2009 - 2012

I was diagnosed with OCD in the spring of 2009. At that point the condition was very mild, and my rituals (physical things I do to reduce my anxiety) were not very intrusive in my life. I was put on a low dose of an SSRI (Lexapro) to manage the condition, and began work on Cognitive Behavioral Therapy (CBT). CBT is a type of therapy where patients gradually exposes themselves to anxiety-provoking scenarios. I was successful with the CBT and the medication. Though I had a few ups and downs, overall, I was improving steadily with my OCD recovery.

2012 - 

According to my doctors, OCD naturally waxes and wanes. This past January I had a series of panic attacks and experienced a sharp increase in my OCD symptoms. Basically, my anxiety and rituals both increased a lot. In order to manage my anxiety in the short term, I've been put on a heavier, temporary anti-anxiety medication (Ativan). My doctor wanted to see if my anxiety would stabilize and return to normal levels on its own. We waited for two weeks, and my anxiety levels had not improved. Therefore, my doctor decided I needed to be on a different medication, and on a much higher dose. So, about a week ago, I switched medications, and increased the amount I was taking. 

Details about my OCD

Rituals: OCD is a condition where an individual experiences distressing thoughts (obsessions) and tries to use rituals or physical acts (compulsions) in order to mitigate their anxiety. Right now, my rituals take up most of my evenings. I'm working on minimizing, little by little, the rituals that I perform. 

Medication: Right now I'm on two medications, a temporary anti-anxiety medication (that I mentioned above) and a long-term SSRI (Sertraline). The SSRI will take some time to kick in, so right now I'm waiting to start feeling the full effects of the medication. I have a meeting with my doctor next week to talk about reducing the temporary medication, and increasing my SSRI dosage. 

Complications: Adjusting to the new medication is a little tricky, and my body has been doing some wonky things during the transition period. I've been experiencing on-and-off nausea, intermittent crying jags, and some nocturnal myoclonic jerking. According to the doctor, these side-effects should wear off as I adjust to the medication. 

Prognosis: My counselor (psychologist), who specializes in anxiety-related disorders, has been having me do little pieces of "homework" every day. Basically, I try to do one thing each day that makes me anxious, such as breaking a small piece of a ritual. My doctor (psychiatrist) says that my ability to do this homework is a very good sign - most people going through medicine transitions aren't even able to do that.  So, it's very positive for my recovery that I'm able to tolerate the anxiety of working against my OCD, if only in small pieces.