I figured I had had my 15 minutes of AOL fame when I was featured on keyword Gay and Lesbian, but apparently it was only seven and a half minutes, because I seem to have been given another few minutes of fame at AOL keyword Health Community. There I am holding Roxy! I seem to have become momentary queen of chronic pain, and I am getting comments, e-mails and IMs from any number of people. I am both touched and overwhelmed.
Many people want to talk about their frustration with the medical system, in general, and methods of pain relief in particular. I have googled around in a very cursory manner on chronic pain, and have discovered we who live in pain in J-Land are not alone-70 million people face chronic pain daily. Most of us are under medicated, not over medicated, by doctors who are not up on today’s standards in pain care. And lots of doctors really don’t care. They are quick to blame psychological problems. I want to shout back. Yeah, who wouldn’t be depressed if they live in pain?!? It’s the PAIN that’s the primary problem-have YOU ever lived with chronic pain!?! I have begun asking my doctors this question, so far, none of them have.
I feel blessed because I like my primary care physician, who keeps referring me out to specialists in an attempt to figure out what’s wrong. And I have a pain clinic. I may not like that doctor as much, and they are really overworked (because there are so few pain clinics in the area), but I have never felt belittled or judged as faking it there, and they give me medication that helps. I am glad I demanded a referral from my orthopedist, who, unable to see my whole medical picture, kept prescribing meds bad for my kidneys, one right after another.
I have learned that this is a long and arduous journey, and those of us who start out as sissies had better toughen up, fast, and become demanding bitches if we really need help. It is shameful that this is so. I have learned that chronic pain separates you from your previous world in a way that is incomprehensible to those who don't have it, and because it often doesn't "show" people get tired of your limitations. I get tired of them, too. Many of us feel suicidal at some point or another, and somedays getting out of bed is simply impossible. Hopelessness lives just on the other side of the bedroom door, and sometimeds it is better to stay put, with the covers over our heads.
I have also learned how helpful most people who live in pain are. I appreciate the outpouring of suggestions, the promise of prayers and support and even the pleas for help I have been receiving. The light of hope flickers through each message. I wish I could offer more than sincere thanks for the concern and care out there. It makes me feel supported on this unasked for journey I am trying to embrace. Thank you all.
picture "Chronic Pain" from: www.eccoblue.org/ abstract.htm