Dear Diary, April 12th, 2017
Dear Diary: it’s been 1,403 days since transplant surgery. The pain clinic hit new levels of idiocy again this week. Last week when we met I explained yet again that the pain was much worse and that I wasn’t sleeping and that I spend way more time in bed now because of pain. Of course, that fell on deaf ears and I was sent away with a small prescription of headache medication that may help a bit with nerve pain and see me in 7 weeks. My good pain doc said it will not help. I take it anyway, because they told me to. The sad part of it is that the medication makes my diet pepsi taste weird. I can’t really drink. I don’t smoke. I don’t do drugs. And now my one vice, diet pepsi, tastes bad. Boo.
Anyway, this all leads to meeting with my pain psychologist. We had a good session. I explained that the pain clinic keeps ignoring my indications that I’m feeling much worse, so the psychologist went to bat on my behalf. Apparently the doctors don’t believe me when I say I hurt, but if she says I do, they listen. Anyway, the nurse calls and says she is suddenly concerned about my pain control while the pain doc is away for 3 weeks. I’m not sure why, since I don’t see the doc again for 2 months. Why is 3 weeks a big issue? And why now? She asks for a phone consult with her and the pain doc. They call the next day. 35 minutes late of course, because my time means nothing to them. And, proceed to blame this on ME. Why? Because I’m not taking the courses offered by the pain clinic. The pain course. The sleep course. Of course I’ve taught the pain course. I’ve taken the sleep course 5 or 6 times. I took these courses at home and did the booklets for this pain clinics because I’ve taken them so many times the psychologist and I felt there was no value to driving into Calgary 3 times a week for weeks on end, taking courses I already have taken. So I did the books at home.
It’s ridiculous! The pain is worse, and therefore it must be because I’m not taking the courses and therefore it’s my fault. Maybe the new medication makes rum takes better because not only is this place making me insane, it’s going to drive me to drink. I don’t understand the disconnect with doctors now. Why can they not listen to their patients? I’ve never asked for a miracle. I just want better. Less pain. Better life quality. I’m not asking to become the next Prime Minister or an Olympic Athlete. I just want to be able to do my chores and still walk the next day.
Luckily, I have my psychologist’s direct line. I called her and told her what is happening. And I still refuse to take courses I have already taken. All I know is that I will for sure get more headaches from that garbage!