In September this year I got extremely depressed. I started staying with my parents because I didn't feel safe alone. I expected the depression to lift in a few days but it didn't. Then a few weeks, but no. So my therapist and I agreed I should do an intensive outpatient therapy program, group therapy for three hours Monday through Friday. I've been doing that for a little over three weeks now.
I feel better. I'm on a new med and I'm on higher doses of my old meds. I've worked through a lot in therapy. It's the kind of stuff any person could use but that you don't realize is missing until all your usual tools for getting through life are gone. It's like we're all carrying around our lives in boxes, keeping everything together, and then you get depressed and those boxes disappear. And you realize how disordered and imbalanced and incompetent we all are. And you can't swap in new boxes because depression won't let you, so you have to figure out how to organize yourself and your life in a way that you can carry it all without a box. If that makes sense. That's the best I've got so far in explaining the intensive outpatient program.
My therapist thought some of my anxiety might be due to epilepsy or migraines because some of it seems neurological, not psychological -- feeling like I'm lying down when I'm not, for example. There were times when I literally felt like I didn't have a head. But my psychiatrist and the psychiatrist who oversees IOP agree that these moments, which include moments of extreme terror, are not neurological but are instead dissociation, derealization, depersonalization.
I never understood my psychiatrist's terming this experience "dissociation." To me, dissociation is the mind separating from the body in order to cope with trauma. I have no trauma to point to. So I said as much to the psychiatrist attached to the outpatient program, and he said there doesn't need to be a traumatic trigger -- sometimes the trigger is extreme anxiety. But as we spoke about it, I came up with, "I don't know if this makes sense, but with the pain, I find I go through tiny little PTSD events, terrified of peeing, of setting the pain off, of" -- okay, I can't write this out now. I need the compartment I'm in right now.
But the psychiatrist agreed with me. I needed to hear that my PTSD explanation makes sense.
That my terror might be neurologically based was both frustrating -- another health problem -- and possible relief -- there's nothing inside me that will break from it; it is just an illusion. That the terror is probably psychological is not the most welcome conclusion. I do feel like the terror will break me someday. It has, actually -- I spent a month confined to the house due to agoraphobia, unable even to get the mail because the world would start tipping sideways when I did. To fear that it will break me again is normal, I tell myself. But that doesn't allay my fear.
I wish I were better able to explain the continuous tiny PTSD the pain brings. All I can say now is that I can't believe this is my life. I'm staying with my parents because I don't want to see my future. I had depression and anxiety before the pain, but I believe I would've stabilized and gotten better without the pain. The pain is a monster. It is trying to kill me. I am trying to ignore it. I'm doing it for the people I love because on a personal level, I can't defend this life.
I am safe. I am okay. I am in therapy five days a week and it is helping. I'm focusing on the present because the future is blank. I can't believe I've made it this far without collapsing. It used to give me hope, a sense of pride, something or other to look at myself and see how strong I have been. Now all of that doesn't matter. What has it gotten me? Here I sit, in pain.
Saturday, November 5, 2016
Monday, May 16, 2016
I have interstitial cystitis. A new doctor put me on Elmiron, an IC med, and my pain dips to a point where I can hardly tell it's there at the end of some days. Sometimes it dips below a 2 in the middle of the day. This has never, ever happened before. The closest I got was when I was able to control my diet at an insane level when I was in grad school seven years ago. I've been on Elmiron several weeks now and I've reached the point where I can blog about the improvement with almost complete confidence that I have interstitial cystitis.
I've always thought I had IC but I've never been able to get a diagnosis. Even urologists wouldn't diagnose me with it because I rarely have the typical urgency and frequency. But I believed I had it because food is the main variable that influences my pain. If my pain were neurological or muscular, food would not have such influence over it.
I went to a new doctor, a gynecologist, who put me on a topical steroid, an estrogen suppository, and Elmiron. The steroid, even compounded, made my skin bubble. The suppository -- she says it's impossible, but I had the most painful lead-up to my period that I've ever had. The acid burn that is usually contained to my vulva spread up my abdomen. I could hardly walk. Maybe that was coincidence, but my period is due tomorrow and my pain hasn't risen above a 5 yet in the lead-up, and it certainly hasn't spread. (5 is average.)
She's the first doctor, though, who thought I had enough of a chance of having interstitial cystitis that I might benefit from Elmiron. Why it took me nine and a half years to stumble across a doctor who would try me on an IC med, I have no idea. Telling her how much food influences my pain was all it took. Bam -- let's try Elmiron.
Today I saw a therapist who specializes in helping women with these kinds of issues. My doctor recommended I see him. I'm glad I did. I'm so angry. I feel like I had ten years cut right out of the middle of my life. I feel robbed. I feel empty. I don't even know what I need to address in therapy. My feelings are giant but vague.
One thing I learned today is that I have to come to terms with eating things that hurt me. Eating them knowing they might hurt me. Hurting myself. The Herculean charge of eating perfectly to appease my bladder, and failing at it.
I'd always fantasized about writing this post, the one where I have all the answers. I am not in the state I thought I'd be. I'm more depressed, more anxious than my baseline. My cat died at the end of March, but I think I'm depressed and anxious beyond the grief of losing her. I can't tell why. So I can't come here and celebrate. I came here to write to you who might need the answer I've found.