Today was my appointment with the pain clinic. Last time I saw them was in December, I was still having my tail bone removed and I didn't even know about tethered spinal cords and the fun of having them freed. The pain clinic is supposed to be the banner all my care falls under, their role in my life is to coordinate my care - making sure surgeons, physical therapists, pharmacists and whoever else is involved all have one point of contact. In theory it's a great system but today, not so much.
Imagine you have been dating your beau for a couple of years, you've talked about wanting a family together and you are actively planning your future. One night, he asks you to don your best dress, takes you for dinner at a very tony spot and nervously sets a small velvet box before you. You open it and see a beautiful diamond pendant hanging from a thick gold chain.
This is a very nice gift, right? But it wasn't what you were expecting. The expectations made a very thoughtful gift less than and even possibly unappreciated.
I went to my appointment today harboring fantasies of exercise programs, physical therapy, stretches, yoga, therpeutic swim classes... SOMETHING... and I got, rest a few more months, keep your schedule limited, take your meds - and hey, speaking of meds, do you need more?
This irked me beyond belief. I have been fighting each and every day to reduce my dosages; aiming to be free of pain killers entirely. Instead, the best I could do, was ask to have the amount they prescribe reduced.
They act like I'm somehow unappreciative of the progress I've made. Which is funny as I'm the one working as hard as I can to make that progress and they haven't even seen me since last year. It still hurts so bad I cry. My life is still limited at every possible turn. I'll be more appreciative when my life is more. More in ever way.
It doesn't help that my doctor didn't know a thing about TSCS. According to him, he "Googled it" before my appointment. I assured him (pleasantly) that I probably know a lot more about the topic than he does. He agreed and said no one in the building knows much about it. Great. He also said that it's so rare that there is no known trajectory for recovery. I really want some steps to aspire to. This rest and see business is maddening.