Wednesday, September 30, 2015

Part of the System

This is going to be a bit of a rant. You're welcome to skip over today's post.

I had a CT scan of my colon to better help the gastroenterologist, now added to my health team, determine if I have problems related to the recent bout of diverticulitis. The fact that I have to add another doctor to my list of health care professionals is annoying enough. A double annoyance was the need for the scan. The insurance stepped in and sent me half-way across the suburbs to an imaging center not affiliated with my doctor. Their hours for scans were not conducive to my schedule and I had to be more than a little firm that I can't just drop my life for a CT scan for a non-life threatening medical condition. They were not happy but we worked out a time I could come. The technicians were very nice. The front office staff, not so much.

Now comes word there are cysts which need to be looked at. These require ultrasounds, two, to be exact. Fortunately, ultrasounds do not require insurance approval so I can go to the center I know and where they have hours conducive to working people. But I'm told the cysts are benign so I'm puzzling over the need to have the scans at all. "Because you have RA," I'm told, "we need to watch these things." Seriously?

And, speaking of RA, I'm supposed to be taking Orencia. While the Humira gave me pain-free days, it wasn't doing enough to stop joint damage, according to Dr. Francis. I felt fantastic, as you know, if you've read the blog for any length of time. To me, being pain-free is my number 1 quality of life issue. If the joints are being damaged, wouldn't I have pain, or is the Humira masking that? I don't know the answer to that question, but I'll trust Dr. Francis' judgement and try the Orencia. Might as well asked for the moon.

The pharmacy I had been using is not where the insurance sent me for the Orencia. The first contact with the new pharmacy was pleasant, but the gentleman giving me the hours they are open neglected to tell me the time zone. I had been dealing with a pharmacy in Atlanta. I knew their hours. Just saying you're open 8 a.m. to 5 p.m. doesn't help me. That could be Central Time or Hawaiian Time, for all I knew. Add to this, the amount of travel I've had to do and I'm not home much before 5:30, my time. Those days I haven't been traveling, I don't remember that I need to call this pharmacy because I have this thing called a "life" and clean underwear is more important than dealing with people on the phone.

When I do get in touch with them, I find out I have a rather large co-pay to get Orencia. There is no patient assistance for which I qualify. I'm directed to yet another number to see if they have anything.

Tests. More tests. A new doctor. New drugs. More phone calls. I feel less like a patient and more like a commodity. This is not how health care should feel.

I realize that, as one ages, more things start to simply wear out. It doesn't matter in what shape you find yourself. We're not designed for the same longevity whales achieve. There are more working parts to break. I also realize I have a chronic illness, an illness where my body turns against me. Add to that another illness which can have repercussions with my RA should I have another attack and we want to not have that. One of my friends, who has a number of issues said, "Welcome to the system. It doesn't hurt as much if you hand them your wallet and bend over." Graphic, to be sure, but perhaps not an all-together unfitting image.

I don't want more tests. I don't want to have to call 5 different places for drugs which may, or may not, let's be clear that we're not sure the Orencia is going to do what Dr. Francis wants. I don't want yet another specialist. I'm struggling with all of this because, until 2012, I rarely got sick. Honestly, I don't know how people with worse diseases than me handle a stable of doctors. I remember reading that people in the fire zones in California were told to pack up quickly and one woman grabbed her medications, all 17 of them. 17! I can't even imagine.

So tonight I have list of phone numbers, dates and times of calls and whom I talked to. I have another trip in the morning to finish up a couple of jobs and then, knock on wood, it appears there's a lull before crazy sets in again. I can stay in the office, work some overtime to complete reports and take an aspirin if my joints ache. We measure things on a "quality of life" scale. When I step back, my actual "quality" of life is good. I'd even go so far as to say "great". Yes, I have the occasional twinge, but who doesn't? I have no quarrel with the treatment I get from my doctors. They seem to be looking out for my interests, but I've always been a person who wants to go low on the medical scale. What's the lowest, cheapest thing we can do now, first, to see if it works? Then, if that doesn't work, we step up. Tests, tests and more tests. Changing drugs. Phone call after phone call is not the lowest, cheapest thing we can do. I feel sucked into a whirlpool I don't know I can get out of. That's my biggest frustration.

Beverage:  Water


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