I feel like I am getting very boring. All I seem to talk about is me being depressed and anxious or me being in pain or Stephanie being in pain. On the one hand, those things do take a lot of my attention. I don’t know if I ever wrote it, but she got examined and tested with a bunch of shit from the Endocrinology Clinic at the Children’s Hospital but they could not figure anything out. The doctor was actually really, really fucking awesome and even though he did not do anything in terms of making progress in figuring out this problem, he was kind and compassionate and explained everything and was pretty much the complete opposite of Dr. Douche. (Who actually blocked Stephanie from being re-assessed by the Pain Clinic, despite the request from the Endocrine people, because he had decided a year ago that it was just all in her head.) In the end, what it boiled down to, though, was that although she has a variety of tests that have some results that are not quite normal, when put together they do not fit with any condition that they know about or are able to treat. So, yes. She has something, and there IS physical evidence that supports my continued assertion that it is NOT “just” a somatic disorder.. but it’s either so rare or such an unusual presentation that they can’t do anything about it.
So I was disappointed with that outcome but not angry at the man. We like to think that with modern medicine, anything is possible but I am smart enough to know that it is not. However as a mother I can’t just accept “we don’t have answers at this point in time” as an outcome that is satisfactory in terms of my daughter’s well-being. So I feel like the weight of figuring out this problem is pretty much resting on me, now. All the ways in which I am not qualified to research and theorise and hypothesise are constantly running through my mind. I think about everything Stephanie has ever said or mentioned or complained about and try to decide if it is relevant or if it was a random one-off. The thing is.. just about every possible combination of symptoms I try comes back with the same single result: CRPS. And we’ve been told in no uncertain terms that it’s not that. Very difficult situation.
Anyway, that’s not exactly where I was going. After the being told that it isn’t CRPS, Stephanie was referred to the Youth Mental Health people because Dr. Douche said it was somatic. She’s been going there nearly a year now and there’s not been any improvement in her symptoms. One problem is that she was referred to the psychiatrist registrar and they work on six month rotations. So she just started to make some progress and the person she was seeing got sent to Logan instead. Now we are soon going to have the same thing with the new person they had. So he’s suggested moving her to psychologist care instead because they are permanently based there instead of rotating all the time. In the process of setting up for this transition he asked her to consider a couple of questions.
1) What does she see when she thinks about the concept of “being well?” (Given that the basic idea of this and any other treatment is to “make her well.”)
2) Who is she, what is her identity separately from the illness? What are the other things that define her, and how can we get those back to front and centre rather than the limitations of this pain being the focal point of Stephanie?
And I’ve not always been really keen on this guy. I loved the lady she had before him. I don’t think he’s bad at his job, I just think he’s not necessarily the best fit for Stephanie. Unfortunately we don’t get to pick and choose in the public health system. But these questions.. I think they’re so important. For everybody, maybe. Right now, especially for Stephanie. And I thought that they could be worth revisiting for myself too.
The other day the girls had a bit of a disagreement about someone going to get something that had been left in the car. Abigail refused because she said “it’s not like you’re sick or something.” To Stephanie. Stephanie got offended and slowly clomped down the stairs muttering about how she IS sick. That was interesting to me. I’ve come to view “being sick” as an entirely different thing to being “in pain” or “having a chronic condition.” I’m not sick. But it’s not really accurate to say that I’m entirely well, either. I’m always working uphill against the clouds in my mind and the limitations of my not-straight spine. (Gay spine. Curved, like a rainbow. Oh, the lolz.) If I really consider “sickness” I tend to see it as something transient, non-permanent. You can and do recover from being sick, reasonably easily, usually. I’m not injured, either. Injuries also heal. Some faster than others, but they heal. And it sounds kind of silly to say this but I didn’t think of myself as having a chronic condition, really, until I started having to process a lot of information and thoughts to do with what is happening with Stephanie. I knew I had a rare condition. I’d never given thought to the true meaning of the word “chronic” though.. because it gets used, I think, to mean “severe.” A bad, serious condition. But chronic is ultimately derived from a greek word χρόνος / khrónos which is referring to time, not intensity or severity. It does happen that a lot of people have chronic conditions that are serious and dangerous if not fully managed. But you can also have a chronic condition that can be of lower impact on your life. Or, as for me, one that is becoming worse as I get older.
This entry has been a casualty of blogus interruptus, which is an ancient Latin term meaning 'life got in the way.'