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Insurance Rip-off

I’m no stranger to the pitfalls of health insurance, but yesterday I had one of the worst experiences yet with my policy. I pay a huge amount of money every month for coverage in exchange for what appeared on paper to be a solid policy as far as health insurance goes. I changed policies within the same company for the new year to avoid a $300 per month increase in monthly fees, and chose a new policy that seemed very similar with a few minor changes like the deductible and out of pocket max. Then I tried to actually use the policy, and what a hell of a rude awakening.

For starters, it only covers one local hospital—not the one five minutes from my house. It also doesn’t cover the orthopedic institute that I’ve been going to for years for my neck and back issues. I was fuming. I’m guilty of not checking the provider directory before enrolling in the policy, but I assumed that since it’s an expensive policy in the same tier as my former policy (platinum) AND it’s with the same company, I’d be fine. Not even close.

I decided to wait until I got home to deal with the particulars and hopefully change the policy while open enrollment is still active. I stopped by Walgreens to pick up my refill of the only prescription I’m routinely taking—Piroxicam—and was told by the pharmacist that my policy doesn’t contract with Walgreens. What? I asked for details. All he knew was that I’d have to contact the company to figure out where I could actually go to get the medication my doctor prescribed. I went from feeling angry to feeling completely enraged. My expensive health insurance had rapidly become a barrier to my good health.

After a lot of phone calls, I was able to have the prescription transferred to CVS and to cancel my policy and activate a new one effective February 1. But if I’d figured out what a rip-off my insurance was after open enrollment closed, I’d have been screwed by that policy for at least six months. In effect, I would’ve been forced to use a hospital system that I don’t ever want to use. Just because a hospital is covered doesn’t mean I should be forced to use it when I need medical care. I’m so disgusted. For-profit companies that we pay huge monthly premiums to should not have a say in where we go for healthcare and medications, especially when the providers we want to use are in our hometown. My new policy will cost almost $300 more per month just so that I can continue to use doctors I’ve known for years. If there’s a word stronger than disgust, I feel it.

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A Happy Surprise and New Exercises

I got a happy surprise with the results of my lumbar MRI—only one slight, diffuse disc protrusion at L4/L5. Everything else looked fine! After suffering through debilitating back and hip pain for 13 months, I feared the worst. I knew my neck was bad, but I still didn’t expect the MRI to show what it did several years ago—three herniated discs. Because of my neck and the severity of my back pain, I tried to prepare for the worst with the lumbar MRI results. It’s hard to prepare for bad news when it I already feel like so much of my life is either stolen or diminished because of health issues, but I readied myself for one more piece of bad news. Instead, light!

There’s still no good reason for my back and hip to be so messed up. Idiopathic muscle spasms—possibly related to the cervical dystonia diagnosis I got a few years ago?—started torturing me seemingly out of nowhere last year. Sometimes I truly wonder if a fibromyalgia diagnosis is just a doctor’s way of saying she doesn’t really know what the hell is really going on.

In the face of misery—misery that is compounded by pain and spinal dysfunction keeping me from doing the vigorous exercise that makes me happy—I’ve discovered a random piece of exciting news. I can climb stairs without much pain. Lots of stairs. I walked up nine stories a few days ago and felt great. Today, I walked up outdoor amphitheater stairs ten times. Walking down sucks, and if it weren’t for having to walk down, I think I’d walk up a lot more. The building where I went up nine stories has an elevator, but I have major death trap phobia about elevators so it’s not practical for me to ride down. Maybe I’ll reach a point where I either get over the elevator fear or can better tolerate walking down, but until something changes, I like the outdoor stairs. I can walk up them and then walk down a grassy hill to start over.

I started another new adventure this week. I’m now working out with a trainer at the 24-hour gym where I hold a membership. I’ve already found that I haven’t been giving good trainers enough credit. This guy knows what he’s doing and is putting forth a lot of effort to help me correct the ridiculous anterior pelvic tilt that worsens my back pain. I have a second appointment with him tomorrow, and while I prefer independent exercise, I’m pretty excited about having a professional ensure I’m not making myself worse.

Meanwhile, the pain persists. I finally agreed to a round of bloodwork, which is something I’ve avoided for a couple of years now. I got very tired of getting the same old results—low white cell count and low red cell count and anemia—without anybody nailing down a cause. It just didn’t feel worthwhile to open a vein anymore, but I’m ready to look for answers again. I’ve also agreed to a few non-invasive tests, but have yet to decide if I’ll actually go through with them. Sometimes the worst thing about having health problems is the time it takes away from the good parts of life. But I know how lucky I am to live the life I lead, so I’ll just complain a little bit then get on with things.

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Lumbar MRI

The lumbar MRI experience wasn’t as bad as I thought it would be. I hate being in tight spaces and not being able to see a way out, but I drank a cup of Easy Now tea before the scan and it made me feel relatively calm. The MRI tech was considerate and positioned my legs comfortably since it hurts my back to lie flat. He recommended “spa music,” which turned out to be a decent blend of massage-like songs.

The best part was not having dye injected. When I had my cervical MRI, the technician injected dye into my arm, and like all injections, it was bee-sting-like and left a sore bruise. I assumed I’d need the dye for the lumbar MRI, but I didn’t, and that was a very nice surprise.

Another good surprise was the promise of results within 24 hours. I won’t see my doctor again for a few weeks, but I’ll be able to access the radiologist’s MRI report and look at my results at home. Since I work in healthcare, I’m reasonably competent at interpreting medical language, and by this time tomorrow, I’ll have an idea of whether or not my back is a disaster or not a big deal. I’ll update this post with the results as soon as I get them (or maybe a little later than that, since I’ll probably be at work). No matter what the report says, I’ll try to keep in mind that knowledge is power.

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Ten Things I Did Before Fibromyalgia

10. I played soccer—a lot of soccer. It didn’t even seem like a big deal when I’d take off my cleats after a game and find a bloody sock. Pain was temporary before fibromyalgia.

9. I ran around mountains, up mountains, and once down a mountain.

8. I tried new sports, like rollerblading, just for fun. There was no fear of the repercussions of taking a stiff, broken body through a new routine.

7. I took ibuprofen for pain and it actually worked.

6. I sat in a chair and read books for hours without my back hurting.

5. I ate ice cream and brownies and cookies and knew nothing about total-body inflammation.

4. I planned my days around choices rather than obligations—choices like when to go to the gym rather than obligations like having to see the chiropractor just so I can stand to be alive.

3. I travelled, and didn’t have to plan trips around muscle spasms and pain. I carried fun stuff in my luggage rather than needing a carload of pain-relieving props (Back Buddy, camping mattress in case the hotel bed is too soft, cervical pillow, Tiger Balm, etc.).

2. I went to sleep like a normal person. No handfuls of herbal supplements, no piles of pillows to ease back pain, no special cervical pillow. I would just lie down and pull up the covers.

1. I was free without realizing it—free to live as boldly as I wished and without pain—free to explore, to take risks, and to relax.

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Paying Medical Bills with Ads?

Taking a break from most fibromyalgia symptoms, contemplating this topic: ad campaigns that help my blog make a (tiny) bit of money. The quick overview: I need the money. I just got a $90 bill for an x-ray that the doctor didn’t even look at, and of course that’s in addition to copays and insurance premiums. However, when the ads are for things I object to, am I compromising my standards?

This is what I’ve come up with so far. The ads are always labeled as such, and I’ve posted before (and am doing so now) that I have little to no control over the ads. The only control I have is in allowing or not allowing them, which means I truly only control whether or not my blog brings in any money or goes broke. Readers have given me lots of feedback that they enjoy my blog, and many of us have been able to connect and offer advice and online friendship in the face of a really crappy chronic illness. The blog itself costs money to maintain, and I like to at least make my cost to run it.

On an ad-positive note, sometimes the services advertised really are beneficial to some people, and at the very least informative. I recently saw an ad for a new type of spinal surgery, and while I’m strictly forbidden to click, I Googled the service so I could read more about it. The advancements beyond spinal fusion sounded promising, and I wouldn’t have been as informed if I hadn’t seen an ad.

In a perfect world, this site would be ad-free, and the x-ray wouldn’t cost $90 and the doctor definitely wouldn’t bill for it if he didn’t even look at it. That said, I’m still uncomfortable with some of the ad content. It’s not explicit or political (I do have the power to block that stuff), but when it’s for products that I have no experience with, it can seem a little shady. I like to believe that everybody takes responsibility for themselves and doesn’t believe everything they read/click/etc. But I feel a responsibility to readers, and I want to know what y’all think. In the meantime, the ads will continue because the fibromyalgia-related medical bills continue. Thanks for your input!

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Food, Pain, and Guilt

“The psychology of guilt and illness—consuming sugar increases inflammation, but constant denial doesn’t feel good, either.” I wrote that note to myself during my lunch break at work last week. I’d been craving a Milky Way bar for three weeks without giving in to temptation. As the forth week loomed, I caved and bought the last Milky Way in the vending machine (which I took as a sign from the food gods, that it was there just for me).

I never eat sugar except the kind that naturally occurs in whole foods. I love sweet foods, but because of fibromyalgia, quite some time ago I committed to avoiding processed sugar. Why would I contribute to added pain and inflammation in my body? That’s a healthy, responsible mindset, but sometimes the guilt that comes with it is daunting.

It’s hard to watch my friends and family eat ice cream, cake, and brownies like it’s no big deal. I don’t begrudge them, but I’m jealous. My hardline thinking about food keeps me as healthy as possible in the face of chronic pain, but it can also imprison me with guilt. If I choose to live by normal social standards and have occasional birthday cake, I immediately feel at fault for the pain in my body.

My reasoning broke down on Thursday. Three weeks of wanting a Milky Way—and I have no idea why I specifically wanted that candy bar—and my back was killing me whether I ate one or not. I realized that my fit, healthy friends indulge quite often and don’t notice adverse side effects, and that it’s unreasonable for me to live in American society and completely forgo all culinary treats.

With way too much on my mind, I took the walk of shame to the vending machine. As I pushed my quarters into the coin slot, I remembered riding my bike to Tom Thumb as a kid and gorging on candy and soda. It was normal life then to eat candy, and I want a normal life again.

The Milky Way was better than I’d imagined. A coworker convinced me to avoid looking at the list of ingredients and just enjoy it. Every bite was delicious, and I wished it were king size.

Every time guilt crept up—I’m eating candy and my back hurts, therefore it’s my fault that my back hurts—I reminded myself that my back was hurting way before the Milky Way fantasy even crossed my mind. Enjoying occasional unhealthy snacks should not bring such guilt, and I know that. But it’s a daily struggle to not feel responsible for the pain, like if I had just eaten a head of broccoli instead of a candy bar, I’d feel better.

But in truth, I’ve lived in complete abstinence from sugar, and while it’s helped me overall, it wasn’t a cure. Just like sugar abstinence isn’t a cure, occasional sugar indulgence isn’t a cause of chronic pain. But I still feel guilty, and I won’t touch sugar again for a very long time.

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The “Unavailable” Specialist

I’ve been waiting on an appointment with a specialist for months, and the week was finally almost here. I hate going to doctors’ offices, and I hate planning my life around appointments. Mostly, I hate not being well. But the reality of not being well means spending a significant amount of time at the mercy of doctors and their scheduling staff. I called to confirm my appointment a week in advance because I’m driving five hours and spending the night in a hotel to see the specialist. The receptionist casually informed me that the doctor would be “unavailable” that day.

Unavailable? I asked her why I hadn’t been notified, and why I had to be the one to confirm the appointment, only to find out it was cancelled. She didn’t give me a decent answer, but said the doctor could see me the following week. I explained that I was coming from out of town, that the hotel was reserved, and I’d already made arrangements with my boss. I might as well have been talking to a toadstool.

I told the receptionist that I’d need to check my calendar and see if I could work something out to change all of my plans and come the following week. She said that was fine, and that the office would be open until 5 p.m. I called back within a few minutes to say yes to the later appointment, and was informed that it’d been given to someone else, and the next available appointment was in mid October. My thought: “Oc-fucking-tober???” My words: “but you guys were the ones who cancelled my appointment—without even telling me—and now I have to wait MONTHS to reschedule it?”

After an absolutely useless and maddening conversation with the receptionist, I asked for her manager. She said the manager was in a meeting, which felt dishonest at best. I asked her if the manager would call me back today, and she said yes. Of course, no one called me.

I understand that life happens. Things come up, and maybe the doctor had to schedule some sort of life-saving surgery for somebody. Or maybe he got a deal on an island vacation. I don’t really care. What I care about is the complete shit for customer service and the lack of decent resolution. At this point, I don’t even have another appointment scheduled because the manager must be on major overtime, as this would be the sixth hour of the meeting she was supposedly running.

It’s inexcusable when people are sick or hurt and doctors and staff act like it’s no big deal to mess around with the schedule and drag out the wait for months. We patients have so little power already. We’re in pain, we’re miserable, we’re frustrated. To have an appointment cancelled is bad enough, but to be made to wait so long after already waiting months is inexcusable. Unfortunately, there’s nothing we can do. If we need a specialist, as I do, there’s nowhere else to go. I have no words for the level of frustration and anger and disgust I feel, and perhaps the worst part is, no one in the doctor’s office seems to care a bit about how their decisions impact patients’ lives.

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Supplements

Four Natural Muscle Relaxers and a cal-mag-zinc.
Four Natural Muscle Relaxers and a cal-mag-zinc.

What supplements, if any, do you use to improve your health or alleviate symptoms? I’ve experimented with lots of them, and switched brands fairly often. Currently, I take a lot of magnesium to help with muscle spasms caused by dystonia. I also take fish oil, melatonin, and cal-mag-zinc at night. I don’t take a multivitamin because my diet is so clean that I don’t feel like I need one.

For fibromyalgia and/or dystonia flare-ups, I keep Crystal Star Natural Muscle Relaxers on hand. They don’t work wonders, but they also don’t make me turn into a useless zombie like prescription pills do. I tried Curcumin but got no relief, so now I just include a decent amount of turmeric in my diet (just in case it works over time), which is essentially what’s in Curcumin.

I can’t underscore how much I hate prescription drugs. Even though it’s often impossible to live without them, I’ve been so beaten down by side effects in the past that it now takes a very, very bad day to make me turn to prescriptions.

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Lightning and a Return to Running

The wet evidence of my storm-plagued return to running. Honestly, it was kind of fun.
The wet evidence of my storm-plagued return to running. Honestly, it was kind of fun.

Remember the song Maybe God is Tryin’ to Tell You Somethin’ from The Color Purple? I made my return to running today after an almost two-month break because of my hip. I’d been jogging along for about forty-five seconds when the sky broke open. I’d been looking forward to trying to run for so long and have had so many setbacks over the years, and I’m not very good at giving up. So I kept going, even when the flashes of lightning and blasts of thunder got closer together, which I’ve read means they’re getting closer to me.

At minute 13, lightning came down with a massive, simultaneous thunder clap. It was more like an explosion than thunder and lightning. I jumped into the middle of the road (not the best solution) and hollered. The hairs on my arms and neck felt like cactus spines, and my teeth felt like they were buzzing. “God is tryin’ to tell you somethin’” got stuck on repeat in my head. I changed course for home.

I made it 17 minutes before deciding not to overdo it with my comeback. My rain-soaked clothes are airing out on the porch, and my hip is throbbing, but it was throbbing before I left for my run. Considering I got caught in one of our famous Florida summer thunderstorms, ran longer than I expected, and didn’t end up a scorched piece of meat, I’m pretty happy. If no one can help me with my pain and spasms, I might as well live and die how I choose. These days, I feel like I can survive anything (until I can’t).

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What the Hell is Dystonia?

“What the hell is dystonia?” I’ve heard that question enough times to get rich if I were paid to answer it. In a not-very-scientific nutshell, here’s my definition.

Dystonia is a condition that causes intractable muscle spasms that result in pain, limited range of motion, and often bizarre postures. Those spasms and postures and pain make it hard to do anything normally. I have cervical dystonia, which means my neck muscles are very tight—sometimes so tight that I can’t do anything but lie flat on my back and yell curse words.

Dystonia can be in different parts of the body, and I’m afraid mine has spread to my right hip. Some days I can’t walk normally, although that’s usually remedied by forcing myself to walk until my gait straightens out, which sometimes takes an hour or more. A few weeks ago, I had debilitating calf spasms in both legs, and I had to crawl to get to the bathroom. I upped my magnesium dose and have thankfully had no more calf problems, although I stretch them obsessively. I’m headed to yet another specialist five hours from home in August.

Sitting is one of the worst things I try to do. I stand whenever possible, often through meals and all day at work. I also have to be very careful with my head and neck. I sold my road bike a couple of years ago in favor of a “grandma” hybrid, because the aero bar position was impossible with cervical dystonia. Now I can ride my bike as long as my hip allows me to sit, or as long as my legs can handle standing while pedaling.

Some people have such severe dystonia that they are stuck twisted sideways, or an arm or leg (or both) are flexed abnormally and locked in a way that looks impossible. I’m one of the lucky ones, although it doesn’t feel like it sometimes, which brings me to my final non-scientific definition of dystonia: it is an unpredictable, life-changing bastard that can make you a prisoner in your own body.

My rather cynical definition aside, I refuse to let dystonia lock me in bed. When I wake up and am slow and stiff, I either go straight to the gym and get on the elliptical (the weird movement of that machine loosens my joints) or walk around the neighborhood. Exercise doesn’t help the pain very much, but it definitely increases my mobility. It’s also a huge psychological victory to be able to still do something I want to do even when my body doesn’t want to cooperate. There are some days when I can’t do much of anything besides feel like a leech, taking up space and resources, but I can almost always force my body into walking.

I recently found the Dystonia Medical Research Foundation, and it’s a pretty awesome organization. Check out their website if you want more information. I’ve been sitting too long, and I have to go for a walk now.