Almost four years ago a group of people got together at Daily Kos and formed a weekly series called Chronic Tonic. It was a place to share stories, advice and information and connect with others with chronic conditions and those who care for them. Sometime near the start of this year the series went dormant. That was a shame.
Here's the thing--it was Chronic Tonic and you know these things can go dormant for a while, but you never know where or when they will pop up again. Turns out, it's here and now. By way of introduction I will start the same way here as I started there, with my story and the first post I ever wrote way back in January of 2009...
Hi my name is triv33 and I am a difficult patient. I didn't start out that way. It was never a goal. If you ask anyone who knows me they would tell you I've always been a tad on the subversive side, cynical as hell, the first to question authority, with one exception, the doctor's office. Like most people I admired and respected my kindly family doctor. When I was twelve and I first started to get migraines, he sent me to my first neurologist. After a bunch of tests to rule out the really bad stuff they put me on medication. The headaches were under control. Thank you Doctor Miraculous!
When I was seventeen, the headaches came back with a vengeance. Back to the doctor I went. He sent me to a new neurologist, who seemed vaguely disappointed with me. He seemed to think my headaches were "stress" related.
The headaches were not so cooperative this time around. They suggested I try to remove the stress. In October of that year I dropped a History class that Coincided with the start time of the headaches. More drugs, lots of them. In November I quit school. I had a night shift job. I made good money. In six months the headaches were back under control. I never questioned the doctors. Why would I? They knew what they were doing.
It still took me more than ten years to become really difficult. Ten years of jumping through hoops going from specialist to specialist, trying alternative therapies, racking up more ailments and watching my life go to hell. Ten years of buying whatever any joker with a diploma on his wall was selling and getting sicker by the day.
One night, shortly before I was going to enter a "big" headache clinic in the city I was laying in bed watching a Bill Hicks special on T.V. and the man said something that resonated with me.
"I don't mean to sound bitter, cold, or cruel, but I am, so that's how it comes out."
Those became words to live by. I was bitter and my new doctor and the staff at the headache clinic were about to find that out.
When you enter the clinic, you leave your pain meds behind you. You need a clean slate for infusion therapy. The nurse asked me if I needed a Phenobarbital to take the edge off. "Edge?" I say. She then very patronizingly explains how I might feel uncomfortable without my meds. When I tell her I kicked the opioid analgesic nasal spray and the pills the weekend before she is genuinely horrified, "But...you can't do that!" She's almost beside herself. "You'd like to believe that, yet here I am." and so it began.
First thing they made me do was take a depression index and the MMPI. Having satisfied themselves that I was not a malingerer and no more depressed than the situation warranted they saw fit to treat me.
The drug they dripped into my veins burned like battery acid and sent my blood pressure sky high. I could have taken that if it had worked but it didn't. That didn't stop them from hanging the next bag at the appointed hour. I complained, bitterly. I told them to keep Nurse Shaky Hands away from my hep-cap. I had blown through two of them and even though I knew it was my own crap veins, I blamed her.
I learned many things that week.
I learned how to get rid of Nurse Shaky Hands. They changed my drip over to a steroid without telling me. It made me do an involuntary herky-jerky in my bed which really freaked me out. Nurse Shaky Hands breezed in, took a look at me and said, "Oh, don't worry, Hon, the Benadryl will kick in and stop that in a minute." I blew a gasket. She really should have told me first.
I learned I could make a resident blush. He came to discuss my depression index and MMPI while my sister was there. He asked if maybe I'd rather he came back at a better time. "No, no, please, there's nothing in there you could reveal that my sister doesn't already believe far, far worse." I then proceeded to hector him over the fact that I felt it unfair that I was asked to take a depression index when it didn't take into account that I had been living in agonizing pain for years. Wasn't it the exact same depression index that they give to people with no pain? Dirty pool.
I learned I could derail a group therapy session in five minutes flat. I listened as one of the others told how a migraine spoiled going to a big business dinner with her husband. My eyes narrowed and I looked around suspiciously, "Is anyone else here intractable? No?" The therapist said something about everyone there having problem headaches to which I rolled my eyes, sucked my teeth and let out a huff. A stilted and uncomfortable session followed. I was not invited back.
I learned how to handle a showdown. My doctor made his way to my room to see me. We had a little back and forth, blah, blah, blah and then he asked THE QUESTION: "Don't you want to get better?" Oh, I went off.
"For Christsakes, what the fuck do you think I'm doing here? I know I haven't been a model patient but this hasn't exactly been a delight for me either. Don't forget this isn’t my first time at the rodeo. You're like my fourth or fifth neurologist. I've been from pillar to post to try to find something, anything that would help me. I’ve been made to jump through all sorts of hoops to prove I wanted needed and deserved treatment only to wind up with shit time and time again. I've been treated like a malingerer, a head case a hysterical woman and a drug seeker. I've been told it's psychosomatic, it's stress, it's vascular, no, wait, its hormones! You get migraines because you're depressed. No, jackass, I'm depressed because I've been in agonizing pain forever and nothing and nobody is helping me! You're atypical, you're combination, and you’re intractable! Is that me or the headaches? I'm not sure anymore. I've lost jobs, friends and I'm about to lose my marriage. My husband treats me like a lemon, I looked great in the showroom but I sure was problematic once he got me home. Since this started I've been diagnosed with IBS, CFS and I'm pretty sure I've got fibromyalgia. I had the option to go down to Virginia to a pain management clinic but that pretty much amounted to becoming a controlled drug addict so I decided to come here. What do you think?"
He told me he believed I desperately wanted to get better. He told me he didn't know what was causing my headaches or if he could help me but that he would like to try, and for nearly two years he did.
The clinic was all about the protocol. My doctor told me that they were helping up to 80% of people who hadn't found help before. Unfortunately, I was not in that 80%. For eleven brutal, pain filled months I followed the protocol. No over the counter or prescription nsaids. No narcotics. I had some schizophrenia drug they used "off-label" for pain that was absolutely worthless to me. If you don't fit the protocol they try to make you fit. The clinic claimed the reason the protocol wasn't working was that I was probably still suffering "rebound" headache. I was scheduled for another week of infusion therapy.
This time I was not as disagreeable as the first time, still, I didn't last the week. The drugs clearly were not working. My doctor released me a day early. On my follow-up visit he told me he was leaving the clinic for another area of the hospital but that he would like to keep me and a few other patients that did not fit the protocol. I asked him what that meant. Well, it meant no more needless suffering. Some people do not fit the protocol, and its nonsense to keep trying to refine a drug program for people who don't respond well to it. For some reason, some signal was misfiring in my head and no amount of following the protocol would stop that. Oh sweet relief, good drugs!
Neither of us was long for the clinic after that. He lasted eight months. He told me he was leaving to get into research, and that he had to hand my case over to another doctor at the clinic. He told me I was the toughest nut he had ever tried to crack. Well, shit. I wished him well. As I was leaving he said, "By the way, did I tell you a friend of mine, a guy I went to school with, just joined a neurology practice up in your neck of the woods. Name's _, good man." He knew what I was in for.
My next visit to the clinic was my last. A man shaped piece of arrogance in a white coat walked in, glanced at my records and sniffed, dismissively, "I'm not going to treat you like ___ treated you, we're going to start from scratch, with infusion." I said, "We are like hell." Got up and walked out. The shock on his face was comical. They didn't want to give them up, but I left there, records in hand, that day.
I went to see my ex doctor's friend. I told him I was a difficult patient. I gave him my records and with the caveat that I objected to the nurses' use of the phrase "patient claims" as I found it kind of bitchy, as if I were telling them something that wasn't true, but other than that, have at it. When I went back for a follow-up he told me that he had hoped to offer me some new treatment, but after looking at my records my old doctor had done everything he would have done and more. My family doctor could maintain my current treatment plan. It was a shame but all the rage now was triptans and not much else was going on but refinements in that area. But, come on back when they come up with something new, he would like to work with me.
That was ten years ago. I won't lie to you. I bottomed out for a while. I did, indeed, have fibromyalgia. I got myself over medicated. I got back on the nasal spray. I spent days at a time in bed. I finally got disability. My then husband started his own better living through chemistry experiments and the whole situation became untenable. Late in 2001 I stuffed what I could into two Hefty bags and ran for my life.
Once you run for your life, what do you do with it? Try to figure some things out. There's a life worth living if you want it. I decided that I wanted it.
Some things there are no good answers for. Why me? I don't know, why not me? Am I still in pain? Yes. Every day. Sometimes it's better and sometimes it's worse but it is never, ever gone. When it's better, I can feel almost giddy and I tend to over-do, but it doesn't last. When a cluster hits it can be damn near unbearable but I know this can't last either.
As far as doctors go, I found a good one. She doesn't mind that I'm difficult. She thinks I'm a riot. We worked together on a treatment plan. I told her I needed to balance pain control with my desire for remaining functional. No more opioids, please, they are hell to kick. I take an anti-seizure medication as a prophylactic every day and butalbital for three weeks of the month. This prevents me from building a tolerance and ever getting close to the dose I used to take. It's not perfect, but I can live with it.
Oh, yeah, did I mention I've got a husband and two kids now? I married a bass player. Yup, migraine girl married a bass player in a rock and roll band. Nobody saw that one coming. I explained exactly what he'd be getting himself into and he was still game. We have two miracle boys (I was told I couldn't have children, but that's another story), ages six and four. Is it easy? No, but what in the hell in this life that's worth a damn ever is?