How my life has changed after an intensive treatment program for OCD

I’ve been reflecting over the past few weeks on how dramatically my life has changed since I started the IOP program. It seems like every day I’m reminded of something that used to be a “problem” that isn’t anymore.

First of all, a summary of treatment…

I first started OCD treatment in January of this year (2018). At that point my life patterns were untenable. The majority of my days were spent in compulsive behavior cycles. OCD had me in a very angry and frustrated place. I started once-a-week therapy sessions, but my OCD continued on a downward trend. Work was out of hand and preventing me from being able to focus on treatment. I eventually decided to take leave from work. This is when I first started to see marked improvements and a reverse in the trend of my OCD. My therapist and I decided I could see much more dramatic benefits if I were able to get into more immersive treatment. After some long debates with insurance, I finally started the Intensive Outpatient Program (IOP) in late June.

I spent 12 weeks in the program which consisted of 2 to 4 hours of active therapy sessions every weekday. Most of these sessions were administered in my home. I had a team of six therapists working with me.

The results I experienced were nothing short of miraculous. My primary therapist has commented several times that he thinks we accomplished in 12 weeks what would normally take 1.5 years or more in regular treatment. I personally estimate that I’ve experienced a 70% to 80% reduction in compulsive behaviors.

I finally ended the IOP program in mid September after we decided there wasn’t much more that could be resolved in the program. I’m now back to regular outpatient visits.

Now reflecting on what has changed…

The following are all behaviors that used to be, but are no more.

  • Plastic utensils and paper plates. OCD used to prevented me from using my own utensils and plates. OCD also used to prevent me from eating food I touched with my hands.
  • $30+ on cleaning supplies a week. OCD used to demand that I spend this much on cleaning supplies every week. This included 12 rolls of paper towels, a couple canisters is Lysol spray cleaner, 100+ Clorox cleaning wipes, etc.
  • Cleaning carpet with Lysol spray. OCD used to want me to clean my carpets with Lysol spray… every inch of the carpet. It would demand that the carpet be dry before I could step on it again, so I would get trapped in my bathroom for 30+ minutes waiting.
  • Cleaning surfaces with cleaning wipes. OCD used to make me clean surfaces when they got “contaminated.” My my phone got contaminated a lot. OCD demanded that the cleaning wipes be used in a certain way and if the OCD rules of using the wipes were broken, I had to start over with a new wipe. I went through a lot of wipes!
  • Closing my eyes and sitting still on the bus. OCD used to make me close my eyes for almost my entire bus ride to and from work. It also demanded that I not bump into or touch anything during the bus ride.
  • Limiting my vocabulary. OCD used to omit certain words, many of them totally benign for most people, from my dialogue with others. These words were “contaminated” and off limits. I picked my words carefully to avoid using the off-limits ones.
  • Outside shoes not allowed in my apartment. OCD used to be hyper focused on my feet and where I stepped. It didn’t want “contamination” from the outside world brought into my living space.
  • Logging out of computer at work precisely. OCD used to require that I very precisely shut down my computer. This meant adjusting the mouse so it was precisely in the middle of the x to close every program that was open. If this wasn’t done correctly (if my hand slipped while clicking, for example, I had to reopen and then attempt to close the program again. Logging out of the computer sometimes took me 15+ minutes.
  • Only wearing certain clothes. OCD used to limit my wardrobe to a few select items. I had 3 or 4 shirts and about 2 pairs of pants that it would allow me to wear. Everything else was “contaminated.”
  • Not doing basic household chores. OCD used to prevent me from doing basic housekeeping like folding and putting away laundry, opening mail, vacuuming, taking out the trash and recycling, washing my dishes, etc. consequently my apartment was a total mess.

This list is certainly not exhaustive, but it gives a sense of how the IOP program has changed my life for the better.

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What’s Peggy been up to?

Well, in July and August during IOP Peggy first got really mad and dug in her heels. But then after I did some really hard exposures and some of the things that she had been telling me not to do for a very long time (this was scary for both me and Peggy), she started to feel threatened because she was losing her job.

In August we went to Camp DCO and she got really pissed off because she knew we were going to do some things at camp that she really really didn’t want to do. So right before camp she threw a fit and started screaming so loud it was difficult to ignore her. It almost made me miss camp. But despite her fit, I knew how important it was for me to be at DCO, so I pushed through and went anyway. She was still pretty angry at camp, but we launched into several physically and mentally demanding activities (climbing on top of telephone poles, solving puzzles, etc. … with some exposure exercises mixed in between) and she soon calmed down. In the end we did the things at camp that Peggy didn’t want us to do, so… victory I guess.

If I don’t sound overly enthusiastic about this relatively huge victory it’s because Peggy still hasn’t shut up. Don’t get me wrong, we have come a long way and Peggy isn’t making my life anywhere near as difficult as she once was, but she still insists on doing things her way, and even though I am now ignoring much of what she says she is consistently trying to change the rules or even reframe old rules or demands in new packages.

Over the last month and a half my life has been restored to normal-ish. Peggy and I reached a point where there wasn’t much more to be accomplished in IOP so we ended about three weeks ago. I have been ramping back up at work and Peggy has followed, though again, she’s not nearly as disruptive as she was before IOP. I go to the gym and Peggy is there. I go to the store and Peggy shows up. I think what she’s doing now when she shows up is trying to fill the voids with new things or old things in new packages. The difference now is that I’m able to push back against Peggy in a way that I wasn’t before IOP. I’m often engaging in active practices to take her power away.

IOP saga

Because of how disruptive my OCD has been, I’ve been trying to get into the intensive outpatient (IOP) program at my clinic. IOP treatment is administered by a team of three to five clinicians. It would be doing the same types of exposure therapies I’m doing now, but for longer periods of time every day. It would include frequent visits to administer treatment in my home. It also includes psychiatric consultation to administer and monitor medication. There are two tiers of IOP treatment: 20-hours-per-week and 10-hours-per-week. The clinic likes to start patients off at 20 hours per week because that is proven to be the most effective. It’s designed to be a totally immersive treatment and I’m told it works best when the patient approaches treatment with the attitude that he or she is going to tackle everything all at once and come out the other end in remission.

These treatments are expensive. They are respectively $6000 per week and $3000 per week. There is no way I could pay for this out of pocket. That’s why I was excited when I found out my insurance company would cover the entire treatment (or so I thought).

When I first discussed the IOP treatment option with Dr. Osborne about two months ago he asked me if my insurance was Premera (Premera has a history of covering in full for pretty much all of the their patients who request the IOP treatment). I said yes because I thought it was. My insurance is actually with Blue Cross Blue Shield (BSBC) of Nebraska which shares the same blue cross logo as Premera and I’d seen the Premera name on other insurance forms of mine. Because of this I just thought BSBC was subsidiary to Premera. Turns out that’s not the case. BSBC does contract with Premera to pay claims in the state of Washington (don’t ask me how or why… this insurance stuff is confusing, but this is why I had seen the Premera name connected with my insurance), but Premera has nothing to do with approving treatment in my case. BSBC will be the ones to approve (or not approve). The clinic’s history in dealing with insurance companies other than Premera is that they’re more likely to decline IOP treatment.

Great. This was going to be more complicated than we thought. If my insurance had been held directly with Premera it would have been a simple approval process that would have taken a couple days and I could have started treatment six weeks ago. Instead my clinic had to go through a complicated pre-approval and negotiation.

The first attempt at getting approval for the treatment was not successful. It was clear BSBC didn’t understand the treatment and the coverage the clinic was asking for. The first response was basically “your insurance policy covers x number of mental health visits per year.” They didn’t understand that the clinic wanted to set up an agreement for payment above and beyond what was stated in my policy. It took them a few weeks for them to first understand the treatment and another couple weeks to get on board, but eventually after a phone call with Dr. Osborne they agreed that the treatment is necessary.

But that was only the beginning.

I learned that the people at BSBC who approve the treatment are different from the payments people who determine coverage limits. The payments people initially said they would cover $500 per day. This is well short of the $1200 per day cost of the full IOP option. There was another week or two of negotiations and BSBC eventually agreed to $800 per day (only two-thirds of the $1200). Additionally, BSBC won’t allow the clinic to bill $800 to insurance and then balance bill me the remaining $400 (I’m uncertain why this is). Even if they did, I still wouldn’t be able to afford $400 per day.

It seemed like we were at an impasse… until I asked a question.

I talked to my clinic to get clarification on one point: did BSBC agree to pay for two-thirds of the treatment cost, or did they actually agree to $800 (two different things)? The answer was $800. The reduced 10-hour IOP option of treatment is only $600 per day, so I asked why not just do that. The initial response was that the IOP team usually likes to start people at 20 hours per week because it is the most effective. After a while they typically taper patients off to the 10-hour tier. I had to do some internal negotiations with the clinic to convince them that the 10 hour per week option was still better than nothing, and eventually we all agreed.

So… the pieces are all now finally in place. Dr. Osborne and the clinic are rallying behind me. Work has made accommodations. Insurance is on board and has approved the treatment.

So, after six weeks, it looks like I will finally be able to begin IOP starting next Monday!

To move or not to move

I live in a two bedroom apartment… a very very small two bedroom apartment. It feels cramped, especially with all the OCD baggage I’ve brought into it. I’m constantly bumping into things that set off my OCD.

A few months ago I thought it would be nice (if I ever had the opportunity) to move into a more spacious apartment in my same building, so I told the manager to let me know if any apartments opened up. She put my name at the bottom of the list. Turns out the building is in high demand and six or seven other people are already in line for an apartment should one become available. Knowing this, I figured it might be a year or two before I would make it to the top of the list.

Well, a neighbor just bought a house and moved out of her one bedroom apartment a week or two ago, and it turns out nobody above me on the list is in a position to take the available unit. The manager contacted me and said it’s mine if I want it.

It’s a large one bedroom unit. It was designed to be an ADA accessible unit so the entry and the rooms are on the larger side. I would guess that the unit is roughly the same square footage as my cramped two bedroom unit.

It’s very tempting.

Pros:

  • I would get to start over in a new apartment with a clean slate.
  • More spacious rooms would probably mean less bumping into OCD things.
  • It would be an opportunity to clean house and get rid of a bunch of stuff.
  • Since I’m currently on leave it could be a good time to move while I don’t have work to worry about.
  • It’s only one floor below mine, so an easy move.

Cons:

  • Moving all my stuff right now would mean once again kicking up a bunch of OCD dust and it’s likely to settle on new stuff.
  • I haven’t given an update on IOP recently, but it’s still a possibility. If I jump into that it would mean a lot more time in therapy and potentially higher levels of stress. It might not be a good idea to move while in this treatment.
  • I’m also still on leave, but planning to slowly go back to work over the next two months. It’s probably not a good idea to try to move while reintroducing work.
  • Since there is so much OCD baggage in my current place, staying here might be a good thing and provide some great opportunities to do exposure work.
  • The unit is north facing, so no natural direct sunlight.

What would you do?

I’m not working

As explained in my last post, I’m not currently working. Officially, I started leave on Monday of this week. I decided it was in my best interest to take leave from work to focus on OCD treatment. Work has been distracting and has been a barrier.

I had originally thought I would be starting full time leave two weeks ago when I thought I would be jumping right into the IOP program. I had cleared this with work and everything seemed set to go. But insurance has been holding it up and the IOP is no longer a sure thing.

I decided that even though the IOP is not a sure thing that it would still be a good idea to focus more intently on treatment. Dr. Osborne also feels I would greatly benefit from something more immersive. He recommends a minimum of an hour a day of self guided therapy; more if I am able. I’m hoping to work up to three or four hours. Additionally we are increasing the frequency of our appointments so we have more time in session together. This week I have two appointments. Next week I have three.

Another reason for taking leave from work is that it will allow to push back more intently on the OCD and face some of my higher level triggers. This will likely increase anxiety and stress and it will be easier to handle if I’m not simultaneously dealing with work.

Luckily, my supervisors have been understanding and accommodating, but it hasn’t been easy untangling and removing myself from the project I’ve been working on. In fact, I had to spend an hour on Monday of this week briefing the coworker who is taking over for me who had returned from a three week vacation that same day. Then I had to do several hours worth of follow up, setting things up so that things are handled efficiently in my absence (there are some fairly urgent tasks that need to be completed in the next two weeks and I wanted to make sure he had all the information he needs to do the work). That trickled into Tuesday and I worked a few more hours that day. I told the project manager that I would be available through the end of Tuesday to answer questions and help pass the baton to the coworker, but after that I needed to completely disconnect from work. Then came an email on Tuesday that I really needed to respond to in order to provide clarity which took another several hours to complete and crept into Wednesday… which required another follow up email. But after that email I said “I’m done” and I haven’t opened my work laptop since.

That was yesterday, so today is really my first day not working.

A letter to family and friends

I had started a blog post to explain my current work situation, but then I remembered that I had written a letter about a month ago to my immediate family and a few other close friends that gives a lot of the back story. So, rather than rewrite, I thought I would just copy the text from the letter. It covers more than my work, but I think the rest of the letter has some good information and does a good job of sort of setting the landscape of my current situation.

Some developments since I wrote the letter:

  • I decided to take full time leave from work and I started on Monday of this week. I expect to be on full time leave for at least a few weeks. I’ve been approved to claim short term disability during this time away from work.
  • It turns out I don’t have the insurance that will cover the Intensive Outpatient Therapy. I’m still working with my insurance company to figure out what they will cover and working with the clinic to determine if and when to begin the IOP.

Dear family and friends,

I wanted to update you all on my situation.

First of all, the last month or so has me completely drained. I’ll go into that in more detail, but I wanted to apologize up front for being distracted and not being more in touch with the people I love.

The general trend of my OCD seems to be downward. I don’t say this to alarm you, but rather to help you understand my circumstances. Every week seems to be worse than the week before. The list of OCD triggers is now a mile long. I can’t seem to leave my apartment without being peppered with triggers. A bus ride to work or even a trip to the grocery store will have a dozen or more triggers. I’m constantly bringing home new OCD baggage. I can’t keep track and follow all of the rules OCD has in place; it’s just overwhelming and too much work. That combined with my busy work situation has resulted in an apartment that by my standards is extremely messy. I hate it. Additionally, OCD is constantly interrupting my work day. One OCD trigger at work can rob me of 45 minutes of productive time. I think this all can be explained by a few things. One, I think it’s just how OCD is evolving. Two, I think it’s related to the stresses I’ve been feeling at work and in other aspects of my personal life. Three, since I have now begun specialized therapy and I’m talking about all the OCD things every week with my new therapist, they are constantly on my mind and since we haven’t really started into the treatment part of therapy yet, I’m reacting to all the obsessive thoughts with many of the same old compulsive behaviors. I’ve heard that this is actually common as people begin therapy and people’s OCD often gets a little worse before it gets better.

As for work, this last week was my last full time week on the project I’ve been working on for the last 18 months. It’s been a very challenging project riddled with problems, most of which I attribute to poor all around management and insufficient resources to do the work we were asked to do. The last month has been a culmination of all the stress. The project was actually “finished” a month ago and turned in to <removed for confidentiality>, only it wasn’t finished because there were still a bunch of loose ends that hadn’t been resolved (again due to management and resource issues). I was given about three weeks to do what would normally be about two months worth of work. This last week was the most hectic and I worked quite a bit of overtime to finish it. Now that it’s done I finally have a little bit of a break to reflect on things.

Simultaneously over the last month, I’ve been working with my new therapist (Dr. Travis Osborne: http://ebtseattle.com/team/travis-osborne-ph-d/) to explore options for treatment. Since my OCD is intruding into work life, he highly recommended I seek approval for FMLA leave (Family and Medical Leave Act). FMLA is a federal regulation that allows people with health conditions, including mental health, to take up to 12 weeks of leave a year and still maintain full time employee status and benefits. It allows me to take time off work to pursue treatment, but I wouldn’t get paid for the time I don’t work. It also allows me to go on the record as having a mental health condition and protects me so that my company can’t fire me for having OCD (and to be clear, there is currently no risk of this; it’s just a protection my therapist recommended I have in place). So, over the last month I’ve had to “come out” to a select few people at work about my OCD and explain to them what’s going on in order to obtain approval for the FMLA leave. It has required me to be emotionally vulnerable and merge my professional and personal lives in a way I’ve never done before, which has been emotionally exhausting.

Another thing I’ve been exploring with Dr. Osborne over the last month is what treatment will look like and how to make space for treatment. Right now it feels like all my time is taken up by two things: work and OCD. Both have me totally exhausted. And since OCD is now significantly intruding into work, I need a way to create a wedge between the two so I have time to do the therapy. Dr. Osborne has recommended at least an hour a day of active treatment on my own. We’ve explored the idea of a reduced schedule to accommodate this: 6 or 7 hour work days, which I could do with FMLA leave. He has also said that taking some additional time up front can really accelerate treatment. There is an option for Intensive Outpatient Therapy (IOP), which is intensive everyday treatment. The clinic I’m going to has 10 and 20 hour a week options (either 2 or 4 hours a day). Dr. Osborne and I have been talking about taking an extended leave to pursue IOP. Luckily, according to Dr. Osborne, my insurance company has a history of approving and paying almost in full for IOP, so it shouldn’t be much out of pocket for this treatment. Additionally, I really feel like I need a break. I need some some time to catch my breath. I need some time to take stock of my situation, make some goals, and figure out what I want to get out of treatment. I need some time to put things in order that I’ve been neglecting for the last few months. All this is pointing me in the direction of taking some sort of leave from work. What I’m still working to determine is the duration or if it will be part time or full time. I’ve also been talking to my supervisor and HR lady about these options for taking leave to accommodate treatment. Last week I also got a call from my HR lady. It was a really sweet gesture. She noticed that I hadn’t taken any FMLA leave since I had been approved and wanted to check in and see how I was doing. She also offered me another option of claiming short term disability insurance in order to be able to take time off to pursue treatment and still get paid. If approved, short term disability would cover up to two thirds of my salary for up to 90 days. The caveat is that I have to go 15 days without working first for it to kick in. After it kicks in I can still work during that 90 days, and if I worked one third time or more I would still earn my full salary.

…omitted some of the letter here…

So, that’s my situation. It’s been a little rough, but I’m encouraged by all the tools I now have in place and the opportunity to create space to pursue treatment. Another encouraging thing Dr. Osborne has told me is that my type of OCD is one of the types that responds best to treatment. Time will tell, but I am optimistic.