The Convalescing Orphan

My husband was a Kaiser employee, until their recent IT layoff. He still works there, but now he’s a contractor (read: no bennies).

For the last 8 years we’ve been with Kaiser, my health care has mostly been an endless game of no-care hide and go seek.

Except for a brief, shining period of about 18 months where we had their (insanely expensive) PPO, and had the luxury of going to UCLA and OHSU for my health care. During that time, we figured out my health care issues, spent some time in rehabilitative services for physical and cognitive fallout from the adiposis dolorosa, uncovered some underlying complications which carried their own risk, and figured out work-arounds for the issues that were preventing me from improving my own health. Some of my scarier test results improved (blood pressure, CRP, cholesterol), my function and productivity skyrocketed, and my use of pain meds was almost non-existent (yay!!).

Prior to this Kaiser had spent 5 years denying I even had any underlying health problems.

After 18 months of seamless, integrated team based care, and feeling better and  being more productive than anytime in my adult life, we were deeply in debt, and could no longer afford the PPO. So we went back to Kaiser nearly 2 years ago.

Since then I’ve had several doctors. Or rather, I’ve been to several doctors. The only one that would accept the AD diagnosis (one I have from UCSD, UCLA, OHSU, and the two primary care docs I’ve seen since my diagnosis) tried every convoluted means to keep me from darkening his doorstep after our first transfer of care appointment. Blood pressure creeping up? Let me adjust your meds via email (with no questions or follow up). Trouble sleeping? Let’s try a stream of psychotropics (instead of a sleep clinic referral, in spite of a history of diagnosed sleep disorder). Pain? I know that rehabilitative services helped with that before, but isn’t oxycodone so much more convenient (prescribed via email? Is that even LEGAL?). I know you’ve had tremendous success with Rheumatology before, but how about we try an appointment with a dietician first (??????)?

After a year of this, some new complications lit a fire under my rear, and I decided no matter how much I may wish to forget Kaiser’s existence, I’m still stuck with them. I tried to find a new doctor.

Since then, I’ve seen 5 of them. The responses have been interesting, ranging from “nobody in our department (internal medicine) has a passion or interest in learning about new diseases” (really???), to “I graduated from med school 20 years ago, I don’t know enough about cellular biology to help you” (what does cellular biology have to do with anything?). The last 3 had a surprisingly common response. Each asked why I thought I had AD (I dunno, maybe because many doctors from reputable institutions of medical learning think I do?), what my symptoms were, and if I had ever considered that perhaps I have fibromyalgia, since the (thousands) of lipomas could be a coincidence. Lots of people have them (really?).

Fortunately OHSU used the best tools in their arsenal to rule out fibromyalgia, via the trigger point… thing (damn cognitive issues). Not really a slam dunk. Besides which, occam’s razor? When the patient’s symptoms are a nearly perfect fit for one disorder, and not really much of a fit for another, which makes more sense?

We did manage to get a rheumatology referral from each of these doctors, since rheumatology was where we’d had the most luck figuring out how to remediate some of the more worrisome facets of this disease. The total count now is 4 times rheumatology has bounced back the referral, saying it’s not rheumatological in nature. Interestingly, UCLA and OHSU disagree, but whatever. Let’s not quibble.

They helpfully suggested everything from dermatology to endocrinology, and while they might ultimately play some role in my care, it would be in more of a supporting role. What I’m primarily concerned with is reducing the risk factors that go along with AD, particularly the inflammatory component.

We had some hope that with the layoff, my husband would be able to find a job that got us back to having more choice in our healthcare, but so far, no luck. Not only does the economy stink, but he’s so busy working damn near ’round the clock on the new skeleton crew, he doesn’t have much time to look for a job.

I decided to go research our options for getting insurance on our own, but I can’t wait through a 6 month exclusionary period, DMEs are a part of our life, and I don’t have a spare $30,000 a year to spend on health care.

It’s unlikely that health care reform will bring choice to the likes of me in the neighborhood of $15,000 a year (what I can realistically afford without again teetering on the brink of poverty and homelessness) so that leaves me, on occasion, fantasizing about other means of obtaining some semblance of health care insurance.

Hook a canuck sounds mighty tempting. Welfare? Illegal immigration?

There is something seriously wrong when I even have to joke about such options.

My husband is a solid workhorse in the IT world, can troubleshoot like nobody else I know, and he’s got impeccable references. He did get a recent offer, they raised the salary quite a chunk over their top to get him, but ironically, the health insurance was a deal breaker. But it gives us hope. They were a small company in a small town, and just didn’t have much wiggle room. Unfortunately nor do we. But it proves that there is hope.

I’m trying to hang on to that hope. My most recent go-round with Kaiser was a horrible overreaction to an allergic rash. They did an x-ray, and found one side of my diaphragm abnormally higher than the other. There is an x-ray from 6 months prior showing it to be stable, but when you have had as many medical surprises as I have, it weighs on your mind.

It’s hard not to miss the days when we had the PPO, and we had the luxury of figuring out the problems, and figuring out how to help me mitigate my risk factors. Of course that’s not cheap with an orphan disease, there’s no data, and more trial and error. I know the conventional wisdom is that preventive care really doesn’t pay, but I find that hard to believe. When you can help a patient lower their blood pressure, cholesterol and CRP with nothing more than lifestyle and dietary changes, when you uncover underlying sensitivities that contribute to these and save on meds, treatments and follow up, when the patient requires fewer visits to address the same problems, and can better maintain their own health… I can’t imagine that isn’t cheaper in the long run.