By now, most of you know what NF is and how it affects me. If not, run the YouTube or read below. I don’t want to repeat myself, except to say that the pain and numbness continues to get worse. While being sick in America often means negotiating a road littered with land mines, they multiply rapidly for those with ‘invisible’ diseases. What you are reading was part of a letter sent to all of my states senators, insurance commissioner, the pharmacy in question, and my insurer. It can feel daunting to fight the powers that be when we are sick and in pain, especially if you are fighting alone, like me. However, it’s important that we keep doing so, drawing support from friends, family and sites like this one. So fight the battles worth fighting, and with all your might. Let go of the ones that don’t matter.
Your heart will know the difference. Listening to it is what’s hard. On April 2, 2004, I went to my pharmacy to pick up my regular prescription of my painkiller, mailed into them from a large and respected University’s multi-disciplinary pain clinic. The pharmacist informed me it would be $62. It's normally $9. He said it "wasn't worth it" for him to submit a claim to my insurance because they didn't reimburse him enough. In a condescending and punitive tone, he advised me to have my doctor call my insurer if it was a problem. Or, I could take the generic brand which he knew I could not tolerate. I had tried it. (Not only that, once he gave it to me and labeled it as the non generic brand. But that’s another story….and a definite law suit if I had been willing.) When I reminded him I had tried it, he said “not my problem.” I live on a very small disability check, and at least $200 of that goes for medication each month, so this was no small increase. But I had no choice, I needed my medication. I phoned my insurer myself, right there in front of him, and spoke to someone who immediately wanted to know the name of the pharmacy and the pharmacist. She said he was a preferred provider and had no business making that decision. She faxed me some forms to fill in, and requested I bring it to her along with the receipt for the meds he charged me for. I was informed they would be investigating the pharmacist and that I would be getting a refund for the difference.
When I called to check on the status, I was told they were investigating all my claims through the pharmacy. That frightened me, because although I have done nothing wrong, I am aware of what this country is doing to doctors who prescribe narcotics and to the patients who use them. Still, I was thrilled they were on my side, even promising me that since he did something illegal, they would break their contract with him, and I should switch pharmacies. One might ask why I didn’t just switch pharmacies in the first place—it’s easy enough to do. But switching pharmacies, doctors or clinics in this "anti-narcotic witch-hunt frenzy" the nation is going through, would only look suspicious. So the insurance company had to write me a letter asking me to switch pharmacies, and listing other possibilities in my area. I believe the pharmacist did this on purpose, to trigger an investigation that would focus on my need for the medication, even though it was, and still is, legitimate.
The notion that if it’s legitimate then you have nothing to be afraid of is pure garbage, unfortunately. I have ONE doctor, ONE pharmacy and I have refilled my prescriptions at the same intervals and at the same dosage since I started taking them. I see my doctor as often as required. He is one of the nation's foremost authority' on pain control and I feel lucky to have him. But since my tumors are inoperable, there is nothing they can do but control the pain. And the pharmacist is well aware of my medical condition. It would be one thing if I were a stranger; I understand he must be careful. But that wasn’t the case. As mentioned, I’d been going there for years. If my insurer pulls the plug on my medication or my membership, I’d be in deep trouble. When I pressed my insurer for information, I was told "this is a controlled substance, you know." I knew then who they were investigating. At the time this happened, I was very politically active (from my laptop flat on my back) in this regard, and knew my concerns were not unfounded. I don't expect anyone to understand how painful it is to live with inoperable spinal tumors, but I am doing nothing illegal or immoral. In fact, I have cut back on my meds from what I was taking a year due to alternative treatments.
Plus, I'd rather live with a little more pain then the side effects of these powerful drugs. I'm referring to constipation and stomach problems, not a sense of euphoria. Used correctly, pain patients seldom, if ever, get addicted the way the DEA is selling it. That's because the drug is introduced slowly, over time, a process called titrating. We don't crush and inject or snort it. We use it for our pain. Can you imagine an insulin-dependent diabetic being told they can't get their insulin anymore? I know it's the class of drug at issue, but it treats a disease, just like insulin. Even if they could operate and get the tumors that are causing my pain, the damage to my spine from them can't be fixed. So yes, I need a narcotic the way a diabetic might need insulin. While the uneducated might argue that a narcotic isn’t a life-saving drug, I submit that it is indeed. I would not be able to get out of bed, let alone do my own laundry, shop for my own groceries and clean my own house without them. And I still can’t do all of those things on the same day. Based on what my government is doing to control these substances, I’m guessing they just want us to go away. A ‘survival of the fittest’ kind of policy. To put it bluntly, the DEA lies about their policies in the sound bytes we are so painfully (no pun intended) use to hearing. But you can go online to the DOJ website and read the truth. The government's fear of narcotics and addiction stems from the inability for any administration to stop the cartels from the harm they are doing. So they are going after the easy target: patients and the doctors who treat them. For the DEA, it’s like taking candy from a baby. But it's hurting millions of people.
I had several examples of doctors who have been prosecuted in here, but this was an old piece that I brought back up, and I don’t want old information on here until I have had a chance to check on it. However, this much is true: Doctors are running scared. The number being arrested far exceeds those that run so called "pill mills" which of course make it difficult for those of us in need. Living like this makes one paranoid, so if that's what people want to call me, fine. But that pharmacist should have been tarred and feathered for his judgement of me, for what he did to me, and for what he is surely doing to others. And who knows if the insurance company broke their contract with him, as they promised me they would. I am not a crazed drug addict. I am a sick person at the end of her rope. This hysteria over using narcotics to treat pain has got to end. "When you have your health you have everything" becomes more than a familiar maxim murmured at Thanksgiving when it happens to you. And life does indeed turn on a dime. Not even
Welcome and thanks for visiting me here! If you are new to this blog, start with "Bumps of Beauty" and other earlier pieces. "The desire for freedom, as it motivates us to our natural state is great joy; The desire to be free from the way things are is great suffering" (Stephen Levine)You can email me at dbsherri1@gmail.com
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Thursday, December 1, 2011
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Sherri,
ReplyDeleteThis is so well written and screams for attention from medical providers and pharmacists alike! Ashley has been discriminated against by her own doctors, who turned on her after she began to take 'controlled substances', i.e. medication for the extreme pain! Thank God we have found a pain management doctor who is on ASHLEY's side, and a pediatrician who is willing and open to listening to him. After many years at a very well known local pharmacy, we, too, had to switch because of constant questions concerning AShley's prescriptions. If these people could just experience one day's worth of NF pain.......
Becky
Sherri,
ReplyDeleteI'm embarrassed to call myself a pharmacist after reading this post, but what I can tell you is that teaching pharmacists regarding the importance of effective pain management has been a goal of mine ever since I have been in the profession. We like other healthcare professionals, lack the training and insight in assessing and treating acute or chronic pain from any source so I'm not surprised that you have had this experience but it doesn't make it right. I treat cancer patients who suffer with considerable pain and they share similar stories with me from community pharmacists. I wish I had a magic wand to cure cancer and other painful conditions such as yours, but until then, I'll keep fighting for improving the lives of people like you! I wish you all the best.
Dave
Don't know if you will read this Daniel, but thank you for your kind words. I have a pharmacist I am very happy with now, and from what you wrote, I can tell you are one of the good guys. There are always a few "bad apples" in every profession....you have nothing to be embarrassed about!! Thanks for reading....and for training others to be sensitive to the patients who come to them; many times scared. In truth, if I have a question about a medication, I go to the pharmacist, not the doctor!
DeleteI just noticed that I called you Daniel....sorry....David! And when I caught that, I also caught that I wrote "sorted" instead of "sordid" What a great writer, eh? I was typing the title too fast and it was a long way back so I missed it. Anyway, sorry I got your name wrong....thanks again.
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