I don’t know what’s going on with me. Since Thursday I’ve been sick. I don’t know if it’s cluster-style shadow pain; a cold or virus; a sinus infection; prodrome to a significant migraine. At least I know it’s not medication side effects, since I haven’t started anything new.
Oxygen and sumatriptan tablets and injection did not work. I was bed-bound for days. Today I feel somewhat better but not by much, and I’m depressed.
I feel more and more like my neurologist and her assistant are treating me like an anonymous study participant. I have no say in my treatment, am not believed regarding my pain. Instead of identifying that I’d had a sort of cluster headache or at least extremely severe, terrifying migraine on May 30, C, the PhD in nursing assistant, insinuated that it was my use of someone else’s Norco that caused a “reaction.” The timing on that was wrong, first of all, and the Norco was what finally brought me back after the second ER visit. She had to drop that theory, but never did anything to validate what I went through. I was grateful for the home oxygen and glommed onto it with everything I had, but it only helps to relax when I’m pre-headache, not when I’m in pain, as stated in previous entries.
I have an appointment at a pain clinic on Tuesday at my GP’s recommendation, but my last visit to a pain clinic was terrifying, and I will be there alone, against my world-renowned neurologist’s wishes, piss tested and analyzed and probably denied. Or given the option of only daily patches instead of pills, which my body would adapt to in a week, and would cause no end of trouble at the ER. If I would even be allowed to go to the ER without violating my “contract.” I have to be able to go to the ER, I have to not be put on a patch, at least not without something for breakthrough. I feel like anywhere I go, I will have to fight for individualized treatment for my particular case. No one is listening. No one understands. Except my wonderful pain therapist/ biofeedback practitioner, who backs me on all of this stuff, despite being connected to my neuro. This lovely professional who gets it, but of course can’t prescribe or do anything except monitor my hand temperature during biofeedback, listen as I cry, and make suggestions. She wants me to go to the pain clinic.
My neurologist is at the AHMA Conference in LA today, where so many of the blogging advocates I follow are eagerly taking notes and live-tweeting. What is she speaking about? The evil of comfort medications (narcotics, benzodiazepenes) in treating migraine? The benefits of meditation, relaxation, multi-disciplinary approaches? Fine, it’s all true. The meditation part at least. And obviously, for some, the narcotic use. But every migraine case is different. I now feel that I have a combination of migraine and cluster headache, with daily shadow pain caused by something other than MOH. Certainly I have suffered from severe migraine since I was a small child. I now no longer can work, am struggling, waiting for my SSI payments to start. I am in bed a couple of days per week, with no medication to help except oxygen and imitrex, injectable and tablet. I still have Zanaflex, a muscle relaxer, but I have no faith that my neuro will refill it when the prescription (by my previous doctor) runs out. A lot of times, like this past week, the sumatriptan and oxygen didn’t work. So I had to just tough it out in bed, knocking myself out with Zanaflex so I could sleep through the pain.
I need something else. I can’t do this. My new GP, an osteopath, gave me a tiny, good faith prescription for Norco with the referral to the pain clinic. Even though she doesn’t write for pills normally, she said. On those days, I had options, I felt comfortable and optimistic and well. But those are gone now, and I am waiting with trepidation for this appointment which will undoubtably be hard. I wish I had my whole Disability application to turn in, my whole history, but I filed online. My last MRI was I have no idea when and my neurologist wouldn’t let me have a new one when I requested it recently, because I feared the white lesions found in the brains of long-time chronic migraineurs (she was dismissive of my concerns). My last CT was in Cape May, last summer, at an ER there, not connected with my current records. I am going to walk into this appointment empty-handed and desperate, with probably marijuana-tainted pee. One of my only options for pain relief and now, I will be penalized for that, since it is still illegal in Ohio and and even in states where it is legal medicinally, pain clinics can refuse to prescribe for that reason. In fact, J told me, having learned through his crisis-management mental health position, “weeding” out (ha) marijuana users is a fairly effective way to limit prescriptions to those who will be less likely to misuse narcotics. This coming from someone who uses it to effectively medicate his PTSD. Feels totally unfair to me, but he said that the new pain doctor could potentially lose her license by allowing for reasonable explanations. Now, it is all black and white. No chronic pain shades of gray.
Absolutely unbelievable to me, the fact that one year ago, I had a highly qualified doctor who seemed to respect me and trust my instincts and care about my case, and prescribe anything that I wanted to try. Unbelievable that he prescribed so much that it ended up hurting me, and then he betrayed me, and now I am unable to get any help at all, perhaps because of the red flag his ministrations pressed upon my state-wide file, in Ohio where the opiate abuse epidemic is spiraling out of control, partially because of doctors like him. His ouster from our local system of care and subsequent dumping of me as a patient was partly, perhaps, brought on by J’s many cases of opiate-addicted children.
But I am not a child. I have fallen through the cracks. I don’t want 90 Percocet and 90 Ativan and 60 Ritalin per month like my previous doctor gave me. I can accept no Benzos even considering my migraine-inducing occasional insomnia and pain anxiety; I’m fine off the Ritalin preventative attempt; just 15 – 30 pain pills per month, 5 or 10 mg, oxy or Norco, for the headaches in between. That’s all.
I am sick, and scared, and tired of fighting. I feel I am not getting appropriate care and I have no one to help me. Broke and exhausted, J working his ass off for very little money, my girls beginning to chafe at my constantly ill status. I don’t want to live this life anymore. I want to be normal. Or at least be able to treat my pain and feel respected by the practitioners caring for me. Otherwise my “life” isn’t worth much at all.