I have to come back to this topic yet again because my life has returned to this problem, yet again. My lovely PCP informed me at the end of Sept. that he was leaving the clinic he’d been practicing at and would be opening his own practice. He said it would work out better for me in the end, as he intended his new office to be closer to my town and I wouldn’t have to drive an hour and fifteen minutes to see him once he re-established himself. He gave me no real time frame for his length of absence, and I tried not to panic as I wondered who else would oversee all my complicated issues and who would write the prescription for my pain management in his absence.
I decided that it might just be easier to stay with the clinic and see one of their new docs, since they’d sent me a lovely letter in the mail informing me that my PCP had left and I needed to select a new doctor. The letter explained that either one of their other two doctors would be more than happy to take over my care where PCP had left off, and they stressed the continuity of care and remaining within the same practice and all that jazz. I figured that things were pretty stable at the moment, and I don’t need any changes to meds or anything like that, just a continuation of the status quo and someone to write the same prescriptions I’ve had for years now and keep an eye on my bloodwork, so I made an appointment with one of the other doctors there.
Said appointment happened to be on my birthday, the middle of November, and so I drove the hour and change to the clinic and met with my new doc. She entered the room and said hello, and immediately proceeded to tell me that they were not a pain management clinic and could not write prescriptions for percocet and that I would need to be referred to a pain management specialist. Oooookay. She was harsh and rude enough that I burst into tears, and she went off on a tirade about drug abuse and heavy narcotics and the problems we have locally while I sobbed. I did manage to explain that I was not asking for a change in meds, just the same regimen I’d been on for the past several years. She refused, and said only that they’d call with a referral to a pain clinic. I asked her to make it be a clinic local to me so as to not have to drive an hour and change, figuring that if I were going to switch then I might as well make it more convenient for myself. In the meantime, as far as she was concerned I could just quit percocet cold turkey – not her problem.
Two weeks later, and their office finally called back with a message about the referral. (I should note that I was not out of percocet during this time but ONLY because I’d been using less than prescribed since starting the fentanyl patch earlier this year and had a little extra stashed) Turns out there is only one pain clinic in my town, and they can’t help me because they “don’t treat lung disease.” I suppose I should show up and say my joints hurt and my back aches? I don’t know, I don’t have the answer. I did a little research on my own and found a place called Palliative Care, which seems to be connected to hospice but is more for long-term chronic illness rather than end of life comfort. Of course there are none of these practices in my town, but there is one in the town where the PCP clinic is, and one at Ohio State with BUD, so I thought I’d investigate *this* route as a means to symptom and pain management. They seem to be unafraid to address these issues in people like myself, so it’s worth a shot, right?
Well, I called the one in Clinic-Town myself and after being transferred about 800 times and hung up on and called back and just generally bounced around, it was determined that they could not help me. They really wanted to set me up with hospice, despite the fact that their website advertised palliative care as well, and they wanted to set it up in my home. The problem was, they couldn’t because I’m not in their county, and they wanted to find someone in my county… only there *is* no one in my county. I am quite willing to drive, but they are not set up that way and therefore, no help. I was so frustrated from dealing with all of this that I thought maybe I’d ask my PCP Clinic doc to set up a referral to the Palliatve Care Center at Ohio State. So I called back there and talked to the same woman who had informed me of my inability to be referred to a pain clinic, and asked her if they could refer me. She had never heard the word “palliative” apparently, and made me say and spell it over and over and over and over. It was soooooo frustrating (for both of us!) and in the end I was yelling at the phone, “P as in Peter, A as in apple…” Still, when she repeated it back to me she had T-A-L-L-I-C – which, I have no idea how she got T from P as in Peter, but okay. At that point we were both super frustrated anyway, and she said, “I’ll speak to your doctor about this and I’ll call you back.” It’s been a week now and I still haven’t heard back from them, so who knows.
So now here I am again with no pain relief and no doctor (well, technically I have one but we do not like each other) and limited options. I don’t know if palliative care is something I should be pursuing or not, and I don’t know who to ask. My appointment with BUD is not until Feb., and I will be out of percs waaaaay before that. I think it sucks and is ridiculous that the crack down on prescription drug abuse has the side effect of forcing people like myself to spend their very valuable and precious remaining time chasing down a doctor who is not afraid to treat them. If I had money I could hit the streets and buy myself some percs, the crack down hasn’t stopped the criminals. It’s only made it more difficult for people like myself and means that I am unable to relax and enj0y my time remaining with my kids because I am either in pain or worried about being in pain and unable to stop it. It sucks, and I don’t know where to turn, or how to fix it, or what to do about it. Eventually I know it will stop because I’ll be unable to take a deep breath due to pain, which results inevitably in pneumonia, which results in an inpatient stay, which will result in many narcotics at quite the cost (both to myself personally, my family, and the system). It seems really stupid and unnecessary. It seems like there should be a way for any doctor to say, “Oh gee, this patient has a chronic and ultimately terminal disease. I think it’s probably okay to make sure they’re comfortable and I won’t get in trouble for writing a script for narcotics under these circumstances!”
Anyway, that’s where I am. I’m struggling again and it sends my anxiety through the roof because I remember that pain all too well and I do not want to go there again. When every breath hurts, I swear you just do not want to take the next one. There have been times that I wouldn’t have inhaled if my body hadn’t forced me. I’ve been done. And in my very biased opinion, refusing to medicate that pain is just cruel and is not helping the crusade against prescription drug abuse at all.
Palikari Part Two 