… hedwyg is reminded that while we have a marginally acceptable system to take care of acute injuries and illness, neither our health insurers nor our medical practices really understand what it means to be chronically ill. I have several diagnoses for chronic illness: Ehlers-Danlos Syndrome, Interstitial Cystitis, Chronic Pain Syndrome, Mood Disorder NOS (probably Bipolar Type II).
Two weeks ago, my pharmacy provider sent an electronic refill approval request to my primary care doctor, who has been managing my meds for most of those things for four years now.
UPDATE: FML. But I’m mean, and make you go to the full post and scroll to the bottom.
Since I’ve been open about my journey with chronic pain and chronic illness on this blog, I’ll just tell you what I take daily:
- gabapentin: chronic pain (mood stabilization)
- nortriptyline: chronic pain
- venlafaxine XR: depression
- lisinopril: blood pressure
- ranitidine: reflux (chronic pain)
- esomeprizole: reflux
- fexofenidine: season allergy (chronic pain)
- melatonin: sleep
- guafenesin: chronic pain
- calcium citrate: interstitial cystitis (and calcium)
So yeah, that’s three handfuls of pills I swallow every night, and the list doesn’t include things like Prelief, pyridium, and other OTC meds that I take as needed. The only prescription-only medication on that list that my PHP has not managed is the venlafaxine; when depression rolled in like a dark, poisonous fog, she was reluctant to add and manage an antidepressant, so she referred me to psych.
When my doctor got the refill request on the nortriptyline, she messaged me online. Are you still seeing psych? Why am I getting this request? So I told her, Um, because you’ve been managing it for me for four years? After making sure I had enough to last until today, she asked me to see whether my pdoc was willing to manage the nortriptyline and gabapentine.
Unfortunately, he is not willing to manage these, and he has a very solid reason. My pdoc is not an MD but a nurse practitioner. This means that it is much easier to get an appointment with him quickly, but it also means that he has to be very careful with boundaries. If I hadn’t been honest, if I’d gone in and said, “Dude! I need neurontin to beat off this hypomania!” then I would now have a shiny new ‘script for it. But when he asked what I take these for, I just said “Chronic pain.” I explained that I lost my health insurance coverage several years back during the whole short-term-disability debacle, and that my PCP had picked up pain management for me ever since.
With chronic illness–and there is rarely just one chronic illness–there is a whole spiderweb of symptoms, and they connect and join and cross each other. The medications you take to manage those symptoms also connect and cross and affect each other. A chronically ill person really needs someone who has the full perspective, who understands that there are multiple diagnoses with overlapping symptoms. Instead, what we get in the US is a PCP who is afraid to prescribe and sends us off to a slew of various specialists who don’t ever meet or communicate with each other. And if we aren’t proficient at self-advocacy, if we aren’t keeping up to date with the medical research ourselves, if we aren’t pro-actively managing our own healthcare, then this whole sticky, complex spiderweb is likely to collapse in on us.
So now I’m back at my desk, feeling helpless and frustrated as I search through the provider database on my insurance company’s website for a new pain management specialist. Because in addition to the urologist and the psych specialist and the cardiologist I see once a year and the gynecologist (Even my vagina has its own doctor! — Jenna Marbles) and every other damned specialist I’ve seen since I started on this journey in 2006, I really need one more freaking specialist with their hands in the mix.
Don’t even get me started on physical therapy! I haven’t had bodywork done in about 9 months, and I am miserable as a result. My health insurer freely admits that their physical therapy coverage is designed for acute care, that they’ve never given thought to patients who have a chronic need for physical therapy. Gah!
I guess that’s enough ranting for now. I have a specialist to choose, and a limited supply of nortriptyline to get me through.
UPDATE: FML: Find a Doctor (Pleh. The screencast doesn’t want to give me a preview, but it’s only 10 seconds long.)