I never thought I’d reach a point where I can sort of function like a “normal” person. I grew up with chronic pain, headaches, and depression interspersed with bipolar hypomanias that were glanced over, leading to misdiagnoses and ineffective treatments.
I was misdiagnosed with major depression when I was 12 and started on antidepressants. I was correctly diagnosed with Chiari malformation at the same time, causing a nonstop headache that was easily always at least an 8/10 on the pain scale. Ibuprofen would give me momentary relief to the point where I was taking it more than I should, which has partly led to me developing chronic kidney disease. Almost everyone agreed that my symptoms were from Chiari, but the neurosurgeon who’d operated on my sister for the same condition thought I was faking it for attention and refused to operate on me, causing my mom to struggle against the system trying to find somewhere to treat me with the sorely-needed surgery. I remember she sent my medical notes to three specialists. The Seattle Children’s Hospital didn’t do the surgery I needed. One was in Cincinnati, OH, one was in New York, NY, and I don’t remember where the other one was. The ones in Cincinnati called me on my lunch at school to interview me. I remember at the end of the call, they asked if I had any questions. I started crying and asked if they would be able to help me. Shortly after that, the one in NYC said I was a surgical candidate, so away we went to NYC for this surgery. I finally got the surgery I’d needed shortly after I turned 15. I missed the last month of 9th grade. I was still being treated just for depression, so my mood was still a mess.
Fast forward through the years of antidepressants and inadequate treatment, where my primary diagnosis was changed to schizoaffective disorder bipolar type and I went through different mood stabilizers and antipsychotics that didn’t work like we needed them to, with our first real accomplishments having been controlling my mood with lithium. Except that worsens my CKD, so we can’t have me on the most effective dose; luckily, clozapine seems to be affecting my mood now too at 400mg a day with just 300mg of lithium.
My therapist told me that she partly thinks that I stand in my own way. I’ve thought about that a lot. I don’t think she’s right in the sense that I could do anything I want at this point… but maybe I could at least do some of the things I want to do. I started working out and recording again. I’ve taken 5 showers in the last 7 days, which is an immense improvement. There are still some side effects that we’re trying to control, but overall, clozapine is doing its work. I don’t have so many intrusive thoughts, no urge to self-harm or suicidal ideation. I’m still not doing everything I’d like, but this is progress. It’s been an uphill battle for so long that it feels weird, being the only one in my own head.
Another positive: I went on what I believe we decided to call a date a few nights ago. There’s something empowering about going on a good date, even if he never wants to see me again. It was a good experience, and I’m just going to hold onto that. One more step in moving on from the past, which I’m sure my friends and family are stoked about for me. We’ll see what happens.
Rory's Write Place 