As I re-read the contents of this blog, spanning the past few years with several long gaps, varying degrees of anonymity, and accompanying various use of writing skill (along with good judgement or lack thereof), I wonder about the “lady” I’ve become. In real life, I’m not sure I am any longer a worthwhile friend, or a good mother. Online, I am lucky to seem like a nice person saddled with a chronic illness. On off-days I can appear to be a thoughtless ditz, certainly selfish. And possibly even racist, as an outraged comment brought my eye to something I did not remember writing and would never have thought myself possible of even thinking. In this new age of hashtags and politicized poverty and new healthcare and new (as well as old) medications, legal and otherwise, my memory is starting to be extremely, immediately unreliable. I am no longer editing and proofing, re-writing and re-thinking and am blogging the way some people tweet. Without thinking. Without considering how public words can reflect everything about who you are as a person, a parent, a partner, an employee, or a friend. Words can make you a sufferer of pain, or a seeker of drugs, or a surviving warrior. By throwing fingertip to phone when I am at my worst and my most upset, I am also recording very publicly my most private thoughts when I am currently in or recovering from or medicated heavily because of severe head pain.
This is not the way I want to be remembered. This is not the way I want to be known, now.
What would elizabeth do?
I’m not even sure I know who I am anymore. Always insecure and sensitive to others’ opinions of me, my identity has mostly been formed by where and with whom I spend most of my time. I no longer have a job and have not, now, for over a year. I am in some varying amount of pain every day. I have become housebound, partly because of this insane winter and partly because it is easy. I have a wonderful husband and great family support, but my husband suffers from PTSD and is more and more estranged from his own family and mine has to support us. “Sir,” as I’d started calling him as my blog began exposing us more and more, is very close to being gainfully employed again, and of course we are no longer moving, but the financial difficulty takes its toll. I spent time and agony getting us on Medicaid, which was necessary but has really compromised my all-important healthcare. My estrogen patch and injectable failsafe migraine medication are not covered at all, and neither was my antidepressant until I realized it may be contributing to near pseudodementia and I decided to start the very slow process of weaning off of it. Google “Cymbalta discontinuation” to learn about how hard that can be. And now, of course, since I no longer want it, it IS covered. I decided to not purchase my 5 vials of DHE for $304 because after 4 injections one week last month, I still had to go to the ER twice. And the ER is now “free” even though I sometimes get treated horribly there.
My Medicaid insurance, Paramount Advantage, is what allowed my formerly wonderful headache care doctor (but actually only primary care) to refuse to treat me any longer when he chose to leave his practice for a new one further away due to “disagreements with colleagues.” He had told “Sir” (heretofore referred to as “J” bc Sir feels weird) that of course we could follow him there, and with the ease at which he had been tossing me medications – methylphenidate as an offbeat migraine preventative at my suggestion, increased amount of sleep and pain medication seemingly out of the kindness of his heart – we would be crazy not to. But that was before I started faithfully using a chronic pain tracker app to really record how much medication it was taking to banish my pain. Prior to 2012 or so, I would be hospitalized for a few days several times per year when my headache cycle became too hard to break. But the hospital model changed and family physicians were no longer allowed to have their patients admitted. Only hospitalists were allowed to do that, from the ER. After that I was admitted only once. It took 12 hours just to make them understand the medication formula I needed: DHE to dissolve the root of the migraine, Dilaudid to knock layers off the top. That last hospitalization was two years ago. The occasional professional breaking up of my cycle was obviously desperately needed, because since then I stopped being able to hold down a job, have required much more of my own medication, and my quality of life has decreased immensely. It is heartbreaking and I try not to dwell on it too much, but I was finally honest with Dr. P about what happens when I come home from the ER still at an 8 or 9. At my January 31 appointment, he acted extremely horrified, cruelly said I was “frying my brain,” did not want to talk about Cymbalta, and dropped me as a patient by claiming his new practice did not accept Paramount Advantage, a Medicaid managed care plan I chose because his current/former practice accepted it.
Being dropped by a good doctor has always been my worst (non family death scenario) nightmare in every incarnation of my identity. Being treated as a drug seeker in the ER has been enough to make me feel worthless and suicidal in the past. This much worse, much more permanent horror of rejection, hopelessness, fear and despair caused me to tear out of that office, shake off J’s concerned hand, and run. Run for my fucking life in a fleece skirt and huge clunky boots through the hospital parking lot, screaming for J to let me go, leave me alone, and to catapult myself headlong face first onto the cement. Collapsed in a heap with torn up knees and elbows I refused to get up, still sobbing, until I became aware that a worried passer-by who was calling me “sweetheart” and inquiring about my well-being might call the police thinking there was a violent domestic dispute.
What would elizabeth do? No matter the year, no matter the place, no matter my in-question Disability application, exactly that. My illness has always been severe enough that terror of unmitigated, misunderstood pain is life altering, life threatening. My depression has always been problematic.
This scene in the parking lot was before I knew that Dr. P was also, besides dropping me as a patient, busily disconnecting me from the medications that he had so recently freely prescribed. I had been honest and I had trusted him to help me. To first do no harm. I had to take a lot of pain medication, but I knew how much would damage my liver and stopped before that point. I had to take a lot of imitrex and a lot of DHE but I knew how many hours to wait between them to avoid serotonin syndrome. This because of a hospital system that could no longer admit me for intractable migraine. Was Dr. P saving my life that day, or endangering it? My answer might be different if he had made a referral, or a single helpful recommendation, or if he had, in months previous, made clear exactly how long he expected me to make the medication last. He did none of those things.
What would elizabeth do, or Elizabeth, for that matter? What would LadyMigraine do? Or Stargirl, or Samantha, elio or e-bot, Mommy, or Partner, daughter or friend?
Would she at least save this post as a draft, think about the words, and edit later?
The doctors I called the following day either refused to treat me because they already knew I had a “complicated case,” or I took too many scheduled drugs, or they did not take Paramount Advantage. My neurologist could not get me in until April. The one office that would take me was a pain clinic at which “elizabeth” has always sneered. I know they count pills and urine test to make sure you’re not selling if they finally do agree to prescribe. And then, thinking Dr. P’s office would at least be concerned about continuity of care, I tried to renew my prescriptions until I could get a referral and records transferred. It took 3 phone calls, increasing in panic and disbelief, before I really understood I was cut off. What is the difference, then, between a PAIN problem, and a PILL problem? Turns out, there is not one.
I changed my Facebook profile picture yesterday to the photo of me in 2009 holding my premature infant baby daughter for the first time, because it was her 5th birthday. I like that self so much better than this one. And in 2005, when my first daughter was born, I like THAT self even better. At that time I was still working at the coffee shop and had so many real-life, wonderful, sincere, loving young friends that they collectively took up my entire hospital room, lining up in a beautiful row of eclectic pre-hipsters, clutching dandelions and weeping tears of joy.
What would elizabeth do?
It turns out, as my supply of essential medication dwindles and I see real-life friends less and less; have no job, no money, and no doctor; post unedited blog entries willy-nilly and forget entire cross-country vacations and live only inside these four walls and inside my own head and have a dog when I was never a dog person and do nothing to help anyone or contribute to the world in any fashion and allow my illness to define me and just sincerely hope I can assist my husband and children to make it alive through another cold winter Ohio day… that I no longer know what I would do.
At the very least, I will save this post as a draft, think about the words, and edit it tomorrow.