Constant Vigilance

 I took some time off from blogging while I was a journalist. I've stepped away from that for health reasons, and am back to scratch my writing itches here. 

Today's segment is a little pick-me-up for my fellow chronically ill peeps, or anyone who needs a gentle reminder to never give up, especially on yourself.

    I’ve been lucky enough to work in many different industries throughout my life. One of the coolest jobs I’ve ever had was working as a Project Coordinator for a reality TV show that built classic American cars. It was my first time working professionally in Film & Television, but managed to land the gig because of all my prior experience working on classic Japanese cars, running a hot rod shop, and working in various parts positions. They needed someone who “spoke car” and was a proficient parts manager, while also being able to maintain smooth communication between the gearheads and production crew on-set.
    It was a very demanding position requiring a super specific skill set – many gearheads are good at wrenching, but poor communicators, and most production folk do not know anything about cars. Their Runner had been learning on-the-fly about cars from these super persnickety fabricators/mechanics (which you have to be while building customs/kustoms) who didn’t have the patience to be teaching a n00b but somehow expected him to know what they were talking about. Poor kid! The shop's parts were a total mess, they didn’t have any tracking systems in place for the builds, and they were weeks behind schedule.

Juggling two phone calls at once on-set, while wondering how I got into this mess!

    So, they brought me in to clean up the mess. And, I’m proud to say that despite my total lack of production experience, I actually managed to straighten things out and catch them back up to speed. I wound up working on set for a total of about four months, which in the traditional working world equates to about a year, considering we worked 12-30 hour days to get the equivalent of two years worth of work completed in that time. You wind up forming some close bonds in settings like that and getting to know everyone pretty well.
    One of the people I admire the most from that time was a producer named Andy. Andy was a fucking gangster. He was unflappable and had the tenacity of a wolverine, a miracle worker who kept everyone focused and made this group of misfits into a cohesive team. He was also a fellow gearhead who had vast experience with building picture cars and was just as passionate about them as the rest of us on the shop side. Anytime a roadblock was encountered, Andy did not back down. He found a way around or over or under. It didn’t matter what it was, Andy would find a way to make it happen. His approach to problem-solving was so inspiring to me, I still think of him as an example all these years later.

The one and only Andy, showing off his office birthday decor

    I cannot work jobs like that anymore. My chronic illnesses are too debilitating for me to pursue work outside the home, and even that has to be on a flexible, part-time schedule. I do get sad about it still sometimes, but at least I can take the experience I gained from that and apply it to life now.

    It struck me today that life with chronic illness is like life on set (especially a reality TV set building picture cars). It can be incredibly demanding, exhausting, disheartening, and at times even dangerous. My boys were pushed to the brink performing custom work that involved a lot of welding and grinding and cutting and other things that are sketchy AF to do while sleep deprived. And we were all sleep-deprived, all the time, until the show wrapped.
    The last week of filming I was so exhausted I literally steeped black tea bags in coffee to stay awake. I was so worried someone was going to get hurt during the final push that I followed the guys around with a broom, sweeping metal out of their path and wrangling wires that could trip up the unsuspecting passerby. When we finally did wrap, I slept for almost 24 hours straight, and the lead mechanic/fabricator told me he slept for almost three days.
  

The guys and I, on the last day of filming

   I often feel I’m teetering on the edge of this same exhausted precipice while in the midst of a flare. Chronic fatigue and pain make even the most basic of tasks a monumentous feat, and our flawed, insurance-based healthcare system does not make management of our illnesses any easier. We’re constantly fighting uphill for the most basic of care and medications. It’s enough to drive you mad! For example, just this morning I was speaking with my insurance company about one of my prescriptions...
 
    I had been on a generic for about a year and a half, when a few refills ago the manufacturer was switched. I noticed right away because the pills were a different shape. I didn’t think much of it, until after a few weeks I noticed my symptoms were getting worse. Then I made the connection to the change in manufacturer. When I spoke to my prescribing doctor about it, he told me I was supposed to be on the actual brand this whole time, and that he would contact my pharmacy about it.
    Well, when I went to CVS they told me they don’t carry the brand, but they could see if they could order it for me – although they couldn’t guarantee my insurance would cover it. When I asked if they could just switch me back to the previous generic manufacturer, I was told they couldn’t control who their source was.
    So, I hit up my prescribing doc again. He told me he would speak to his pharma rep about it and see if they could source it for me elsewhere and if it’s covered under my insurance. Well, it’s been almost a week, so today I decided to just call my insurance company directly. The first time I called, the gal told me that the brand would only be covered if I was diagnosed with “qualifying clinical criteria.” She went through the list of qualifying illnesses, and although there were several on there in the same class as mine, my specific diagnosis was not listed, and therefore I did not qualify for the brand name script.

Just give me my pinche script, por favor.

    As you can imagine, I started getting frustrated and a little emotional, because this med really makes a difference in how disabled or functional I am – and I’ve become pretty disabled since the manufacturer switch. I don’t know what’s in these pills, but there sure isn’t much of the medication in them! When I asked if that was the end of the road, she told me there was one other possible option – my doc could set-up a “Peer to Peer” with a Clinical Reviewer, who could review my case and make an exception.
    First, however, we’d have to jump through a series of hoops: My doctor would have to write the brand prescription again, then we’d need to have it filled at a pharmacy that actually carries the brand. Once the script comes in, it will show as being rejected by the insurance company, and once the rejection is on file, my doctor will then need to submit a prior authorization to the insurance company. Finally, once all that is done, my doc can start a case to be examined by a Clinical Reviewer, who will then decide if I can actually get the brand or not.

    Exhausting, no? I thanked the gal for the glimmer of hope she had given me, despite the dizzying bureaucracy that lay before me and doubting my doctor would be able to make the time for all this BS. After hanging up, I had a mini-breakdown. Time and again, I’ve been failed by this medical system, and it’s difficult not to let each failure compound. One can only take so much before they break. What matters in these moments is not whether or not we break down, but whether we choose to get back up or not.
    Once I’d had a good little cry, snuggled my cat, done a quick meditation, and hit my vape pen, a few questions popped into my head that I realized I could have asked the insurance rep while we were on the phone. I should have asked if there was any way to switch back to the previous generic manufacturer, and if not, if she could give me a list of local pharmacies that fill the brand name, so I could at least start the process of jumping through all the Clinical Reviewer hoops. 

Cat tax

    So, I called back and asked. And guess what? They were able to find a local pharmacy that could fill my prescription from the prior manufacturer that I was happy with! True, I’m not any closer to getting the brand name, which I should be able to get no problem, but at least I’ll be able to get back on a med that I know works, and if the hoop-jumping fails, I won’t be totally screwed.

REMEMBER TO STAY FLEXIBLE AND SOLUTION ORIENTED!!! Yes, this situation fucking sucks, but the moment you think of yourself as a victim of circumstance, despondency takes over and clouds your vision, which prevents you from seeing alternatives and thinking creatively. If I had stayed stuck in my emotions, I wouldn't have thought of the idea to try and source the manufacturer I’d been happy with before. I know it’s exhausting and fucked up and unfair, but if you don’t put up a fight and remain diligent, nothing will ever get done.

Be like Andy, the tenacious TV producer who made miracles happen and never took no for an answer. And when you need to pause to take a breather, vent, and recover, do that. Then, get back in the ring and keep fighting. Because no one else can do that for you.

CONSTANT VIGILANCE!