You can’t see as many doctors as I have without having the odd bad time, but it doesn’t happen often, which is why I wasn’t expecting it when it happened. It was a visit to the doctor who handles my pain meds who I have to see every three months so he can check on me and re-prescribe all of my normal meds. I’ve been his patient for four years now and long ago explained my religious and medical histories; he is aware of the deep inhibitions I have against asking for help, my inability to report my pain and discomfort accurately, and a little bit of the shame and judgment I feel in being on, and asking for, pain medication.
Because I am who I am (control freak!), I track in my datebook the application and refills of all my meds, as well as symptoms, and appointments. My records showed that a particular prescription would run out long before my next appointment. He disagreed and assured me I had plenty of the medication. In general, prescriptions are supposed to last a month – 28 days – however, there are often more than 28 days in a month so his records were different than mine.
I tried to point out my calendar-counting and he grew even more firm: according to his calculations, I was good for several more months. He physically turned his screen to face me, pointing out the information, and negating any protest I made. He urged me to check with the pharmacy – certain, I imagine, that they would support his records, not mine. I started feeling threatened, and as if he would refuse me all of my medications if I didn’t shut up and agree. So I did. To regular people, this probably seems insignificant, but with my religious background, it was traumatizing. I left the appointment shaken and frustrated, sure that I was right but unsure what to do about it.
I’ve lived side-by-side with my RA for twenty-four years. I know how to care for it, what to feed it, what will make it worse or better. I know when to rest and when I can probably get stuff done. I’m familiar with each ache and pain, and I know when there’s something new that needs to be addressed. The disease has settled into a relatively steady place, with few flare ups, and I’ve come to terms, for the most part, with my physical limitations. What really pisses me off now isn’t the actual disease – it’s when the mechanism that manages my illness makes itself known. Strangely, that’s when I remember most strongly that I am not free.
Regular people may not realize that everyone who has a chronic illness received a tether the day they received their diagnosis; the availability of health care and medication keeps it short. I am dependent on a healthcare construct: dependent on medications, dependent on my doctors and their ability to medicate me, dependent on pharmacies, and able to only traverse a proscribed path. Every problem I ever have with a pharmacy, doctor, or medication activates the deep anger I have about my RA and the fact that I will always be dealing with it in some way.
I am essentially leashed to the medical world, and every now and then, that leash gets tugged. Every time the pharmacy messes up a prescription (which happens a lot!); or I have to fight with the insurance company to pay for a treatment or medication (prescriptions can run upwards of $3,000 or more); or I have to ask my doctor for a medication that society has judgments about (hello, opiates); I can feel that leash go <twang>!
The quality of my life begins and ends with my medications, and not just the ones for pain. They keep my symptoms reduced, my inflammation cooler, my mind happier, and my energy a little higher. I can work, write, provide care to my ill father, care for and mentor my step-daughter, care for my husband and friends, and voluntarily facilitate grief support groups as well as a support group for caregivers. I do everything I can to keep myself healthy but, in large part, I am able to function as well as I do because of my medications and my medical care.
There will always be pharmaceutical and physician-related tethers restricting my movements and abilities. I will never be able to move to another state without worrying about transferring doctors and prescriptions; never be able to travel without developing contingency plans by making sure I have enough of all my meds as well as their prescriptions; and, of course, never plan any activity without factoring in my energy and ability-levels, my access to pain meds, and the fact that I have several doctor appointments a month.
Since I try to look at the positive and the negative, I know my situation could be much worse. I could be suffering from a metaphorical crate as well as my metaphorical leash: I could be (and have been before) housebound, in a wheelchair, unable to get out of bed, or in the hospital. So I am grateful – mostly. And in the end, I was right about the medication. I spoke to the pharmacy, then called the doctor, explained the situation to his nurse, and changed my appointment to come in sooner. It was a victory for patients everywhere. Unfortunately, all of this took precious time and energy from me – working to obtain a medication I don’t even want to be on. If that isn’t irony, I don’t know what is.
The fact that I am always leashed to the health care construct taking care of my illness, is obviously not a happy one for me; which is why I have always worked on lengthening it as much as possible by taking care of my body, exercising, engaging in therapy, acupuncture, and chiropractic care, and taking medications properly and on time. Maybe someday I’ll be able to slip it altogether. Until then I try to forget about it but it can be hard when you’re waiting for the next tug on your neck. Maybe I should get myself a diamond collar to make it a little better.