Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain

hurting like hell, living with gusto
The book is a spinoff of the Fibromyalgia Athlete blog and tells some backstory and a lot more details of my journey with chronic pain.

At long last, my book is published! It’s been under contract for a little over a year and went to press a few weeks ago. Orders have started shipping from Amazon and Barnes & Noble, reviews are beginning to come in, and author events are lining up. Click here to check it out on Amazon.

This has been a whirlwind and still feels insanely surreal, although every time I do an event or hand-sell a book to a friend or stranger, reality seems a little closer. I’ve learned a lot of lessons every day of the journey, and continue to learn almost constantly. Here’s what one of the reviewers, Amos Lassen, wrote: “This is so much more than just a beautiful read. It is a memoir to be cherished and referred to when we are feeling down.”

I’m lucky and grateful, and I thank you very much for reading my book and sharing it with others who might be interested. Also, click here for my author website. Thanks, y’all!

A Few Updates

I’ve been very busy with the release of my book (yay!) plus continuing to work some healthcare shifts, and the best way to catch up here is a series of random updates. Here they are:

  1. The regenerative medicine doctor is awesome. After several comprehensive blood tests, he settled on a supplement regimen to help me restore some of my health. Based on the results of my blood work (and OMG it was a TON of blood work– never want to do that again), I’m taking more than a dozen supplements twice a day to address things like low testosterone, gut yeast, and inflammation. All of the supplements are purified and/or hypoallergenic. Some of the supplements I take are fish oil, magnesium, turmeric, DHEA, and an interesting little combo called “cognitive aminos.” I feel much better in general, have less anxiety, and have pretty much gotten used to swallowing a zillion capsules a day. All of this, of course, comes at a steep financial price and is NOT covered by my extremely expensive health insurance policy.
  2. I’m midway through Class IV laser treatments on my back. It, too is expensive and not covered by insurance, but it’s really helping. Almost all of the referred pain is gone from my butt, and there’s much less referred pain in my groin and abdomen. I’m still having a hell of a time when I lie down, and I’m losing my mind not being able to work out as much as I want, but the lack of butt pain is miraculous.
  3. Despite trying not to, I still have to take occasional prescription meds. Two nights ago, I took one muscle relaxer because it was 3 a.m. and I was in misery. I don’t even think it did anything clinically except knock me out, but it was nice to have lights out, if only for a few hours.
  4. I started the first round of paperwork to get medical marijuana for muscle spasms. It is an absolutely ridiculous process and it, too, will not be covered by insurance– assuming I’m approved, which is a big assumption. Soap box– I could go get a prescription for something a lot stronger, a lot more addictive, and a lot heavier on the side effects tomorrow and fill it the same day. There’s something very, very wrong with that.
  5. My book is finally out, and I’d really appreciate it if you’d take a look at it. Click here to see it on Amazon.

 

Running, Renewal, and a Pretty Good Month

cheaha sunset
Gorgeous sunset at Cheaha.

I’ve had as good an October so far as I had a bad September, health-wise. It’s been a almost six weeks since I’ve needed a chiropractic adjustment (although I have to twist, roll, and traction myself daily), and I’m back up to running multiple times per week and lifting weights. Until a few days ago, I was sleeping pretty well, too. Chronic health problems are often cyclical, and I was reminded of that a few days ago when my hips and low back felt locked and painful and self-care wasn’t cutting it. I didn’t do anything out of the ordinary to cause the issue, and I’m hoping a quick trip to my beloved chiropractor will fix my woes.

I bit off more than I can chew with work, and some of that stress is probably contributing to my tight muscles and sore back. The teaching semester will be over in about five weeks— not that I’m counting— and getting down to one job plus writing will be relieving. I don’t know if it’s age, health issues, or what, but I just can’t work as many jobs as I used to without feeling overwhelmed.

I had a business meeting at an office about twenty miles from the state forest, and I knew a good run in the clean air would help clear my mind. I saw an awesome rattlesnake and enjoyed the solitude. I had to stop a few times to try to work the kinks out of my back, but otherwise it was a great run. I hope I can get out there again soon. And speaking of awesome runs– I had a great one at Cheaha State Park in Alabama. The mountain views, the morning mist…it was one of those days when it’s great to be alive and aware.

Dirt Road Running and River Tubing

dirt road run
The T described by the shuttle driver was an intersection of wide dirt roads. Perfect for running.

I planned to run eight miles on forest roads yesterday morning and meet friends for a day on the river afterward. Despite careful planning, I realized my chosen route wouldn’t work when I found out from the kayak shuttle driver that my friends’ drop-off point was going to be more southerly than I thought. If I ran the route I chose, I’d come to the river north of them, and I was pretty sure I couldn’t catch their kayaks with my 99-cent tube. The shuttle driver saved the day by giving me fantastic directions for a pig-trail route to catch up with them further south. The new plan made me a little uneasy but sparked my curiosity. As my friends boarded the shuttle, I repacked my bag, ditching my iPod in favor of a compass and adding extra Gin Gins in case I got lost and hungry.

The shuttle driver’s directions were spot-on, even though he failed to mention a few turnoffs that made me more than a little nervous. Every time I passed another trail, I wondered if he’d forgotten to mention a turn. I decided to run out for an hour, and if I didn’t find the river by then, I’d turn around and follow my footsteps (and compass) back to my truck. I love adventures, but I hate going off road without a map. None of the forest maps I own—not even the official Forest Service map—shows the route I was on yesterday.

jurek endure bottle
Rationing my water from one of two 10oz bottles on my Jurek Endure waistpack.

At the eighteen-minute mark, I found the T the driver told me about. “You’ll come to a place where you’ll either have to go left or right,” he said. “Turn left.” I’d written his words down on a tiny piece of paper and stuffed it in my waistpack so I wouldn’t risk my memory playing tricks. I turned left like he said, and within ten minutes I was at the river.

Unfortunately, my friends were way upstream, so I had time to kill. I turned around and ran a bit more, than came back to the river and talked with a family who’d arrived via shuttle for tubing. What I witnessed—and the conversations I had with that family—is too powerful and emotional for me to talk about yet, but suffice it to say I felt the convergence of tragedy, unfairness, hope, and resilience. Rather than wait for my friends, I decided to hike further upriver and process my encounter with the family of strangers.

I found another unmarked trail, this one narrow and crisscrossed by spider webs, but it was a decent hike. I followed the route upstream for a mile until I hit an impasse. A huge patch of wetlands suddenly appeared, and I don’t think I could’ve even made it through with snake waders and boots, let alone in running shorts and sneakers. I dipped down off the trail onto a sandy beach and sat under a cypress tree in the river. My back and neck were really bothering me and I hadn’t slept more than three hours the night before, but the cold water felt great. I wished I could figure out a way to float on my back and completely relax without being carried by the current.

blackwater river
My riverfront view as I waited for my kayaking friends to paddle downstream.

My friends arrived eventually, better late than never, and their kayaks were loaded with food and supplies. It was great to see them paddling their kayaks toward me, and I sat with them on the beach and pigged out for a while before we headed downstream. I’d run with a deflated tube bungeed to my waistpack, and once I got it blown up, we took off down the river. Note for future adventures: tubing on a 99-cent piece of crap is a lot slower than going down the river on a kayak. I ended up getting towed a good portion of the way by three generous friends who switched off paddling duties as I clung to the tails of their kayaks. I told them I’d be fine and would catch up eventually, but they stayed with me anyway. Five slow miles later, we floated under the last bridge before the river becomes non-navigable, and I walked up the bank to my truck. Changing into dry, cotton clothes felt great after being wet literally all day.

It was a very successful trip in terms of nothing going wrong, but I was so ready for something crazy to happen that when it didn’t I was almost a little let down. I’m excited about the future, though—after seeing all those pig trails, I’m ready to go back and explore more uncharted territory. I’m going to take my GPS and make my own map of the trails. Who knows? Maybe I can sell copies of the map (to that one other person besides me in the whole world who would want to hike there?). Better keep my day jobs.

Earlier Mornings and Organization

I’m making a major effort to organize and restructure my life. The reasons are varied, but the bottom line is I need to be more productive if I’m going to have a shot at accomplishing my major life goals. Lately I’ve dedicated a lot of thought to what I want my life to look like, and I realized (no shock) that my lack of Type-A tendencies hold me back from getting the most from my days. My brain is scattered, my workspace is scattered, and there’s no way I’m maxing out my potential in the midst of chaos. I could make excuses, some of which are legitimate (like how exhausting it is to fight chronic health issues), but the crux of the problem remains the same—I have goals, and I can’t accomplish them if I don’t get organized.

inspirational quotes
I put together some inspiration to hang over my newly organized desk. These are just simple notecards I wrote on and laid out before tacking them onto a cork board.

I printed a simple Excel spreadsheet to itemize my days and times, and started yesterday by filling in what I did with each time block. My ultimate plan is to write myself a schedule and adhere to it come hell or high water, but for now I’m just feeling out what a truly organized life will be like. I spent three hours going through stacks of paper, drawers of random stuff, and bins with pens that don’t write anymore. I chose to work meticulously rather than just tidying my space, and the task definitely started to drag. However, when I was done, I had a usable, organized desk. A large paper grocery bag full of recyclables proved just how much crap I’d kept for years.

I also confirmed what I suspected—I’ve let my health problems dictate too much of my days. There are times when that can’t be helped, but overall, even attention to a health crisis can be scheduled in a spreadsheet. I’ve been nearly killing myself by running too late in the mornings. By the time I get around to running, it’s usually 92-95 degrees in the shade. I struggle with getting comfortable at night, which means I often don’t sleep well, which, in turn, means I don’t move very efficiently in the morning. When I do get up, I take a lot of time to traction and stretch my back, rub Cryoderm on my neck, and/or do whatever else my body demands. It’s sometimes 10 a.m. before I run, and that’s not the smartest routine in the summer in the Deep South. It’s also a productivity-killer.

Fix number one was definitely organizing my desk. I’m not entirely sure if it’s true that a cluttered space equals a cluttered mind, but I feel better when I look at my newly arranged workspace. It’s been a source of embarrassment for years, and the piles of junk on it have definitely hindered my productivity. Now it’s a place that signifies pride in myself and my work and dedication to my future. Seriously, it seems that important.

Fix number two is saying to hell with my health problems and insomnia and getting up early anyway. (I used to work the 5 a.m. – 5 p.m. shift, so it’s not like I’ve never had to get up early.) I set my alarm for 6:30 a.m., but when I still couldn’t get comfortable enough to sleep at 1 a.m., I grabbed my phone and changed the alarm to 7. It felt a little like defeat, but I respect my body enough not to punish myself too much for my pain. Guilt over health conditions is absolutely counter-productive. At 6:57, I woke up anyway and turned off the alarm before it could blare. That small action empowered me, and I headed to the kitchen to wake the dogs and put them out to do their business.

Side note—as far as “doing business,” like many runners, I much prefer to do mine before I run. I knew there was a possibility that last night’s dinner wouldn’t get moving at such an early hour, and I was right. Luckily, nothing catastrophic happened, although it was a little weird to head out the door to run before using the bathroom.

I drank ½ a cup of coffee and ate a Larabar, rubbed sunscreen on my face, and put on the running clothes I’d laid out the night before. I paced around the house as a preliminary warm-up, and played with our puppy for some dynamic movement. I sat on the porch stairs for a minute and self-tractioned my back, then knocked my SI joints into alignment against the tiled steps. So far, so good, and I was out the door before 8 a.m. to start my warm-up walk.

5.15 miles run
Electronic proof of a solid run. I used my refurbished iPod Nano and the Nike+ app to track my route, and the nice background pic belongs to the app.

The run wasn’t glorious or amazing or any of those other words I’d hoped would apply, but it was pretty damn good. The sun was still low enough that the mature trees in our neighborhood blocked it from directly cooking me, and the asphalt hadn’t heated up to the point of steam and odor yet. The bayou looked peaceful, almost like it was just waking up, too. I was covered in sweat by the end of my five-mile route, but not completely drenched like I am when I run later. The best part was, I wasn’t exhausted. I came home completely sold on running early in the morning and determined to back that alarm up to 6:30 and eventually to 6.

So far, my time log looks a lot better than yesterday’s. I couldn’t sleep two nights ago, partly because a nasty outbreak of psoriasis itched so bad that it kept me up. The skin calamity was the main reason I didn’t get up until almost 9 yesterday, but it had a strong effect on my productivity. What I’ve also realized is, staying in bed later doesn’t make me any less tired or any less itchy or really affect my pain and discomfort at all. In fact, I was less stiff this morning than usual after less time in bed.

Today’s To Do list is long, and it’s a good feeling to be partway through it at only 10:25 in the morning. I’m figuring out that I thrive off the sense of control I get from being extremely organized. Chronic pain demands so much attention, and it’s nice to fight back by telling my body that it’ll still get the help it needs, but that it’ll have to be helped efficiently and within my schedule. I truly feel empowered (also somewhat due to being able to squat again, which I’m sure makes me mentally and physically stronger!), and “empowerment” is something I haven’t really experienced in years. It’s a damn good feeling.

Squatting with Sacroiliac Joint Instability

air squat
Imperfect form, but I can squat! Victory!

I’m able to squat again! That probably sounds like a weird thing to celebrate, but I’m absolutely ecstatic. The recovery from my back pain/sacroiliac joint dysfunction has been long and complicated. I still believe that exercise with an emphasis on functional movement is the closest thing to a cure. I stick to my core workout like a religion. That said, it’s a tough road and sometimes I’m exhausted from the dedication it takes to heal myself. My three major holdouts in the battle against back pain have been sleeping, sitting, and squatting.

Sleeping is a night-by-night ordeal. Sometimes I can get comfortable and sleep 3 or 4 hours without even changing positions. Other times I spend almost all night turning, getting up to stretch, stacking and re-stacking pillows under my legs, and generally feeling like shit. Overall, my sleep situation is vastly improved, but if my SI joints are misaligned and put pressure on a nerve or two, I have a miserable night.

Sitting, too, is much improved, although I still can’t tolerate a soft surface like a couch or recliner. I do a lot of computer work while sitting on a wooden piano bench and am grateful I can sit half an hour on my butt. There was a time, not that long ago, when half a minute was torture.

Squatting is a bigger deal than I first realized. For starters, picking anything up with good body mechanics almost always requires squatting, especially if something heavy needs lifting. Petting small dogs requires squatting. Tying shoes requires squatting. You get the idea. I’ve made several adaptations, including training my puppy to get on a chair so I can pet her without squatting (no kidding!), but of course I want to be able to squat. My fitness has somewhat plateaued due to the lack of squatting, since lots of major weightlifting and core exercises require a squat.

A few days ago, after trying some new kneeling exercises to open my hips, I decided to advance to a wide-stance squat. I needed to lift a piece of landscaping concrete and didn’t want to ask for help. Living with chronic pain means frequently asking for help, and I hate asking people to do things for me. I took a deep breath and separated my feet well beyond the width of my hips, then squatted slowly. I waited for the usual searing pain to shoot through my right SI and into my right buttock, but all I felt was a slight twinge. I held the squat for a few seconds and got tears in my eyes. That may sound crazy, but anyone who’s had a physical limitation will understand. When that limitation is lifted—even if only partially—it feels like a personal miracle.

I’m very, very careful with my newfound squatting ability. As much as I’d like to do air squats until I drop (seriously, that’s my idea of fun), I’m only doing ten per day until I’m sure my back can handle more. I’m also resisting the urge to add weight to my squats. Just being able to squat is a huge accomplishment and I don’t want to take it for granted and end up hurt worse than ever.

I don’t keep a gratitude journal, although I probably should. If I did, one of the first things on my list this week would be “ability to squat.” Sometimes the simple things really are the best.

Sprained Ankle and Sore Achilles Tendon

ice sprained ankle
I wrapped my ankle with a soft icepack and a bandage, then elevated it while Otis watched from the couch.

I don’t often have a so-called normal injury, but when I do, it’s a tough battle to force myself to take care of it. I worked on some posts about chronic pain and insomnia this weekend (which I’ll publish soon), then ironically got a relatively great night of sleep. I woke up Sunday morning ready to run. The weather was beautiful, I’d actually gotten some rest, and my back and neck were behaving pretty well. I decided to go 9-10 miles, depending on how I felt on the road.

I took off on terrain I’ve run on for years and was quickly bored with the usual sights and sounds. On a whim, I ducked behind some fenced-off private property (no location details here, but don’t try this at home, kids) and discovered a network of hidden trails in the middle of suburbia. Birds sung loudly, the air felt fresher, and all I could see were trees—real, hardwood trees! I had no idea how long the trails would last, but I hoped for at least five minutes of traffic-free running.

As I rounded a corner under a canopy of oaks, I realized I’d been in the woods for at least a mile. I was thrilled. So thrilled that I stopped paying close attention to the leaf-covered ground ahead. I ran at a 7:30 per mile pace, fast for me on a long run, and felt carefree. My feet landed on soft ground and I couldn’t smell smog or see any cars. I looked up at a cardinal in a tree and my right foot came down on a small stump. My ankle rolled so badly that I felt my fibula slam into the ground. I heard and felt a “pop” but instinctively kept running. Continuing to move was my way of assessing damage.

A few steps later I decided, despite the pop and severity of the roll, nothing was badly damaged. Pain shot up from my ankle to my knee on initial impact, but the sharpness dulled to an ache as I kept running. “Stupid,” I said aloud. “Watch where you’re going.” I was lucky, for sure, but I also make a habit of running in grassy medians and through debris-strewn parks as much as possible to help keep my ankles strong. I’m pretty sure Sunday’s outcome would’ve been a lot worse if I hadn’t spent lots of time strengthening my ankles.

I managed another eight miles after the trail ended and returned home full of excitement, energy and nagging concern for my ankle. I drank coconut water and described the trails to my wife, who smiled but expressed her disapproval at my adventure. She was right—I should at least tell her where I’m going if I decide to cover new ground. Oh, well. Live to die another day.

I spent the rest of the day like normal, throwing toys for the dogs, reading magazines, and stretching my tired body. My Achilles tendon ached, but my ankle didn’t show any swelling. I pinched along the margins of the tendon and it was sore, but everything seemed relatively in order. Then, as is the case with many sports injuries, nightfall brought pain and stiffness.

By the next morning my ankle and Achilles throbbed. My foot, ankle, and knee were stiff, and I tried everything I could think of to remain in denial about the injury (although I ordered some K Tape, so I wasn’t in complete denial). I have chronic pain—not normal injuries! I don’t have time for normal injuries! A sprained ankle and a sore tendon seem so alien.

The ankle felt unstable, so I bought a cheap drugstore compression sleeve to add support. I was able to walk around the neighborhood, but that was probably stupid. I felt worse after the walk. I hoped to run this morning—not quite two days after the initial injury—but when I woke up (yes, I slept again!) I knew it would be a very dumb idea to run. I probably could, but what if I turned the ankle again? I’ve seen friends with horrific Achilles injuries, and I don’t ever want one of my own. I put the compression sleeve on and set out for a walk. Too much pain. Time for plan B.

I ended up riding my bike around the neighborhood, but if I put the bike into a gear that offered much resistance, my Achilles screamed at me. I managed 25 minutes and headed for home. I couldn’t believe that all of my chronic pain issues were finally, blessedly feeling under control, but I was sidelined by an avoidable, normal injury.

As soon as I finish typing I’ll wrap my ankle in ice and elevate it for 15-20 minutes. I’m trying not to jump out of my skin about being unable to run. My perspective is weird—on one hand, I’ve dealt with horrific health issues that kept me from running (or doing much of anything) for a long time, so a few days off for a sprained ankle shouldn’t be a big deal. But, because of those stolen years when pain and bad health kept me down, I don’t want to lay off another day. More down time seems unbearable.

The reality is, those of us with chronic pain still get routine injuries, too, and we have to treat them with respect. Time to ice my ankle, dammit.

Eating to Fight Chronic Pain

Some of y’all asked what I’m eating these days. I thought it’d be easier to show some pictures with captions rather than making a boring list. I’m a true believer in fighting chronic pain and fibromyalgia with whole foods as the primary weapon. I stay away from processed food and almost never eat refined sugar. I don’t adhere to one specific diet but instead choose foods that make me feel good rather than those that make me sick. I almost never go out to eat, but when I do, I’m finicky about which restaurants and what I order. In general, I stay away from wheat, dairy, added sugar, and processed meat.

food for chronic pain patient
I like hardboiled eggs and raw veggies for lunch.
healthy dinner
A few nights ago I baked chicken, a Korean sweet potato, carrots, and green beans for dinner.
healthy restaurant food
During a rare visit to a restaurant, I ordered stir-fried chicken breast with Chinese broccoli. It was delicious!

Core Workout to Combat Chronic Pain

core workout for chronic back pain
I do a core workout almost every day to fight chronic pain.

Keeping my core muscles strong has been a lifesaver. Not only am I able to run again, but I’ve started sleeping again because I’m not in as much pain when I lie down. My low back and pelvis and hips were in so much pain for more than a year that I was terrified it would become a lifetime issue.

I already deal with chronic pain and felt like I couldn’t stand a new addition to my pain resume’. The core exercises help my pelvis stay in proper alignment, which relieves the once-constant pain in my back and hips. The picture of my notebook shows what a daily core workout looks like for me. I change things up each day but always do the basics.

Traveling with Chronic Medical Conditions

I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.

One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.

I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.

What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.

I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.

I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.