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Chronic Lyme Disease

trail running
I’d like to say that 2019 was all about mountains, running, and enjoying nature, but in reality, I was in the fight of my life and for my life.

I don’t think there’s such a thing as a 100% bad year, but 2019 came pretty close. Even as I type that, it doesn’t feel true. There were some absolutely awesome moments, from traveling for book tour events to hiking in gorgeous places to running past a bear in a tree. But overall, my health was terrible this year. Scary terrible. I finally got a definitive diagnosis, and it wasn’t good news: chronic Lyme disease.

In the past, the various diagnoses– cervical dystonia, fibromyalgia, relapsing-remitting multiple sclerosis, and the list goes on– ate away at my body and my mental health. Until this year, nothing attacked my cognition, and I can easily say that losing my ability to think clearly– to reason, to comprehend, to remember simple things– is the most terrifying problem I’ve ever had. The week of Thanksgiving, I finally got some clarity in the form of a doctor who spent nearly two hours with me, one-on-one, without interruption. From passing out in the hall in the middle of the night to getting lost in my own neighborhood to crushing headaches to constant exhaustion and a million other awful symptoms, the answer, for him, was simple. Lyme disease. Chronic Lyme disease, to be exact.

lyme disease
This photo represents how I spent a huge chunk of 2019. I took it during my lunch break at work. The bandage from a pre-work blood draw was still on my arm, and I was pale, miserable, and exhausted. I continued to work what were sometimes very long days, but by lunchtime most days, I could barely function. I’m lucky to work in a small PT/Chiropractic clinic where the staff is like family and comfort measures abound.

I was too sick for a while to fully comprehend anything, let alone a breakthrough diagnosis. I spent my days trying to make it through work at a job that I’ve done for almost nine years with previous relative ease. I spent my weeks wondering when bloodwork would come back (so. much. bloodwork.), and I spent my nights exhausted but unable to sleep. A depression that I can only describe as a feeling of being possessed took over. Migraine-like headaches left me even more exhausted.

Mast Cell Dysfunction

The first problem the doctor began to work on, almost immediately after our initial few minutes of discussion, was what he said is secondary mast cell dysfunction. I’d never heard of that before, and had no idea it could go hand-in-hand with chronic Lyme disease. I hadn’t even made much of a big deal about the symptoms, since they seemed so inconsequential compared to the other debilitating problems that I had. But when I described sneezing, coughing, gasping, and getting congested after every meal, the doctor paid close attention.

I showed him two videos (chronic pain patients know we need proof because practitioners often doubt what they can’t see) of me literally ingesting nothing but water and going into a massive sneezing fit. He diagnosed mast cell dysfunction and told me to immediately start taking Zyrtec every morning. I’m not a fan of Western medicine unless it’s absolutely necessary. I’ve been burned by side effects many times, but I reluctantly bought some store-brand Zyrtec and popped one before breakfast the next morning. No coughing, no sneezing, and barely a sniffle after I ate. It was just short of miraculous.

Lyme Diagnosis

The Lyme disease diagnosis was not so simple to handle. I’m learning more than I ever thought there was to know about Lyme disease, especially chronic Lyme disease. There’s a big chunk of practitioners who, for various reasons, fight about it, but I’d rather not go into that much. People will always have big opinions and big mouths, but I prefer to only listen to and respect the ones who deserve it. Dr. Richard Horowitz does a great job of explaining all this, if you’re interested. Look up his book called Why Can’t I Get Better for details. The main thing I know is, I’ve been very, very sick for a long time and now I finally know why.

I’m scared. I’m scared for my present and for my future. I wonder if I’ll ever get full cognitive function back, and the idea that I won’t is haunting. I have a binder dedicated to symptom tracking and Lyme disease information, and I’m beginning to solely focus (as much as possible) on majorly reducing my symptoms. There isn’t a cure, and I’m so NOT ok with that that I’m considering going back to school to become a researcher who works for a cure. In the meantime, I’m starting an herbal regimen (Stephen Buhner’s chronic Lyme disease protocol) and managing minute-to-minute fluctuations in energy, mood, and cognition.

lyme disease running
Running isn’t everything, but it’s a huge part of my happiness. I’m beyond grateful that, at least for now, the herbal regimen I started (plus my very clean diet) has allowed me to do what I love. Nothing about chronic Lyme disease is easy, but everything seems better after a good run.

After about a week on some high-quality, Lyme disease-targeting herbs, my energy level increased and I was able to start running again. That was a godsend. Running has long been my sanity-keeper, and the fresh air and trees are the best medicine for everything. I’m already a medical marijuana patient, so I have access to MMJ for sleep, but I also added CBD oil to my regimen. Lyme disease, once it spreads and becomes chronic, can cause an awful condition called Lyme arthritis, so I’m also starting on powdered gelatin. I made Golden Milk for the first time yesterday and am tightening up my diet more than ever. If you haven’t tried Golden Milk, I highly recommend Googling a recipe for it. It’s a warm concoction of anti-inflammatory foods, and while the turmeric can be a little potent for some people, I thought it tasted pretty good.

I started out reading everything and anything I could about chronic Lyme disease. I read studies that showed things like oregano oil and stevia work well to fight the bacteria, and other studies that showed garlic can be helpful. I read and read until knowledge-gathering become too much of an obsession, so now I’m alternating reading Lyme disease-related stuff with fun magazines and running books. Knowledge is power, but it can be oppressive, too.

I go back to the doctor in a few days and we’ll make a plan on how to go forward from here. I don’t know if he’ll want me to start strong, long-term antibiotics or not, and I’m not sure how I feel about that. I’ve talked to so many people who’ve had poor results from antibiotics and/or who had only very short-term success. But I’m sure they work great for some Lyme disease cases, and ultimately I have to decide what’s best for me, not for others.

I’m still spinning from the diagnosis and the fallout– I lived for YEARS with relapsing-remitting MS, except now I know that wasn’t true, and it’s freakin’ bizarre. I have a lot, lot more to say about chronic Lyme disease and how it’s affecting my life, my running, my work, but the brain fog is awful and it makes gathering thoughts quite challenging. For now, I’ll leave you with two of my favorite (so far) resources for chronic Lyme disease patients.

Lyme Disease Books

  • Stephen Buhner, an herbalist, has done extensive research on Lyme disease. You can buy his books on Amazon and learn a lot from his website. I bought Healing Lyme, and it’s a wonderfully informative, well-researched book. I would LOVE to meet Stephen but I recognize that this is a pipe dream of epic proportions.
  • Richard Horowitz is a doctor who’s worked extensively with Lyme disease patients. I bought his book Why Can’t I Get Better, and it’s a solid resource for a mixture of Western medicine, anecdotal evidence, real-life examples, and Eastern practices. He seems like the type of compassionate, thorough doctor that most of us would hope and pray would treat us.
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Greater Than Cool Review

Cooling Neck Wrap

This summer has been insanely hot, and the heatwave started way too soon. By the middle of May, most of us in the deep south were avoiding the outdoors after 10 a.m. if we could, not showing our faces outside until nearly sunset. It’s gotten worse, with “real feel” temps around 106 for our new normal. That’s not particularly healthy for anyone, but especially for those of us with underlying health conditions, excessive heat can be dangerous.

I first tried Greater Than Cool on a boiling-hot day in my parents’ backyard. Even in their pool, I couldn’t get comfortable and felt constantly fatigued. I love being outdoors (I should move out of Florida!) and didn’t want to go back inside while everyone else was outside. It seemed like a great opportunity to try Greater Than Cool.

greater than cool wrap
Wearing my Greater Than Cool wrap in my parents’ yard.

Filling the Wrap with Ice

My parents have an icemaker, and after extracting a few perfectly uniform cubes—which excites me since we don’t have an icemaker and our cubes are randomly sized—I folded them into ice pockets in the Greater Than Cool wrap. The experience was vaguely reminiscent of making a burrito and was quite easy and user-friendly. My left hand was around 50% numb that day thanks to scoliosis and bad cervical spine discs, but I got the wrap full of ice and around my neck without much issue, which tells you it’s reasonably simple even for someone with less than ideal dexterity.

My neck is extremely sensitive to everything. Ever since I royally jacked it up while working in the back of an ambulance when I was an EMT, I’ve dealt with everything from cervical dystonia to herniated discs to hand numbness and, of course, chronic pain. I was a bit concerned about wearing the Greater Than Cool wrap around my neck, but the weight of it, even when full of ice, wasn’t symptom-provoking at all. My neck got damp when I put the ice straight in the wrap, but I didn’t care. I was already sweating anyway, and it’s not like the melting ice poured down or even dripped. It just made me a little damp. If you don’t like that, try using the small plastic bags to house the ice within the wrap. 

Details

The fastener is Velcro, so it’s easy to handle and adjust. According to the manufacturer, “the proprietary cotton polyester multi-layered material is engineered to absorb and distribute cool moisture evenly throughout the neck wrap.” The Greater Than Cool wrap is navy blue, so it looks nice enough with just about any outfit (although I’m looking forward to them considering a unicorn design, hint hint y’all!). You can put the ice directly in the wrap or in small plastic bags, or I guess if you wanted to, you could buy and use re-freezable packs. As of this post, the wrap costs $22.99 on Amazon, which isn’t a ton to pay if it allows you to live a more comfortable, full life outdoors.

Does It Work?

Yes! There’s science behind “central cooling,” which was a term I learned when training at a firehouse in the Florida summer. Since so many of us had overheating issues, our chief drilled the basics of central cooling into us. Essentially, he told us, putting icepacks over arteries is a great way to cool the human body. Greater Than Cool circles around the neck and comes into contact with a couple of major arteries, and I could really feel a difference in my whole-body comfort while wearing it.

The wrap is unlikely to help with major heat illness like heatstroke, but it might help you avoid getting that sick. I was able to stay in the backyard with my dogs and family while wearing the wrap, when otherwise I’d have been forced to go back inside. As my ice melted—which didn’t happen as quick as I thought it would—I simply went back inside for a minute and got new cubes. The wrap could work even if you’re not home, as long as you have access to a few ice cubes, like from a restaurant or a hotel or a convenience store. I filled up all the ice pockets, but if you just want to cool down a little, you can add less. 

Verdict 

If you spend time in the heat and need a little help staying cool, definitely give Greater Than Cool a try. They’re a small, family-owned business born from the need to help loved ones participate more fully in life without overheating. They’ll unveil new options soon, like color choices and multiple sizes, but their basic product (blue, one size fits most) is great! Click here to check them out on Amazon.

Disclaimer: I received a Greater Than Cool wrap in exchange for an honest review. I’d tell you if it sucks, but it doesn’t! It’s a solid product and a good choice if you deal with heat intolerance. 

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Altra Escalante Running Shoe Review

altra escalante review

I got a long-overdue new pair of running shoes last week and put them to work immediately. The Altra Escalante is one of Altra’s newer designs, and it’s definitely a winner. I look forward to a future version with slight tweaks that will hopefully make a great shoe even better.

Running Performance

Stellar, except for the sizing (see below). I could’ve easily gone several more miles in these awesome shoes if they hadn’t felt too big. The more I ran, the bigger they felt—probably because my feet drifted laterally a bit, which reduced the functional length of my feet within the shoe. Other than that, I loved running in the Escalante. They stayed soft and cushy without being marshmallowy, and the knit upper had just enough support without being structured. I had to retie the laces a few times for optimum fit, which is pretty common for me when I run in brand-new shoes, but once I got settled on the right lacing, I was good to go. I ran with the Escalante on asphalt, concrete, and damp, grassy trails without traction issues, although it’s definitely not a trail shoe (and doesn’t claim to be).

Breathability

I didn’t find the Escalante any better or worse than most running shoes in terms of breathability. I live in Florida and frequently run in jungle-like humidity and extreme heat. There’s no shoe in the world that can keep feet cool and dry in those conditions, and the Escalante is no exception. Sweaty feet are just a fact of life for runners in the deep south.

Midsole

The white foam looked a bit thin when I took the shoes out of the box, but when I put them on, they were extremely soft and cushioned. The bounciness took a few minutes of adjustment since I’m used to firmer shoes, but once I started running, I was hooked. The Escalante is the most comfortably cushioned shoe I’ve ever worn. It feels a little too soft while walking, but it feels like heaven while running. I have sensitive feet that get angry easily, and I have zero complaints about the underfoot feel of the Escalante.

Outsole

The outsole reminds me of an old tennis shoe traction pattern. The rubber is pretty smooth but has deep grooves. It’s highly segmented and leaves a lot of the midsole foam exposed, which helps reduce weight. I’ll update about durability in a month or two.

Appearance

altra escalante review
I really like the way the Escalantes look and feel.

I’m a fan of Altra from way back when they issued their first Intuition that looked somewhat like a medical shoe with moon boot styling. I’ve often felt that I compromised aesthetics for comfort and function. Some of the major brands that’ve been around a lot longer make really good-looking shoes that always tempt me, but Altra consistently wins in the comfort and function categories. “Embrace the space,” as they say. Each time their designs have progressed, I’ve gotten happier and happier with the appearance of their shoes. The Escalante is the nicest looking Altra I’ve owned yet, except for maybe the bright red pair of Superiors that I own and love. I got the gray colorway in the Escalante, and it’s quite subdued without being too dark. 

Sizing

altra escalante running shoe
Surprisingly, there’s way too much room in the front and front/side in my usual size, so I’ll need to go a half size down. This photo was taken after my feet were swollen from running, and the shoes are still too big.

I’m a 9 or 9.5 in every shoe I’ve bought for at least a decade. In Altra, I wear 9 in the Intuition (version 3.5) and 9.5 in the Superior (version 2.0). I bought a 9 in the Escalante and was worried it might be too small based on other reviews of sizing. However, it’s the opposite of what I thought. Immediately after I put them on, there was too much space in the front and side-front of the shoe. I moved my foot around a bit and changed socks, but there still seemed to be too much space. I don’t like tight shoes, so I decided to lace them up and walk around a bit. They seemed good after all, so I wore them for a 5-miler. Unfortunately, by mile 2, it was glaringly obvious that they were too big. I almost tripped a few times because of the excess length. I can’t believe it, but I think I’m going to have to exchange them for an 8.5. My feet always tend to shift laterally in shoes, especially when I run, and that lateral shift made the 9s feel even longer. Really unexpected to need a smaller size, but I have to go with what fits best, regardless of number.

Final Verdict

hurting like hell, living with gusto
Proof that I’ve been an Altra fan for years— check out the Intuition 1.5 on my book cover!

I LOVE the Escalante. It’s my new favorite shoe, except for the sizing. It’s an unstructured, perfectly cushioned, lightweight option for multiple paces and surfaces. I really, really hope the 8.5 fits perfectly so I can run a ton of miles in them. I’ll alternate the Escalante with my old pair of Intuitions (until I get new ones!), and still plan to use the Superior for trail running and the Lone Peak for hiking. Click here to buy the Escalante. 

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Breaking Food Rules

I had a really bad day that mostly sucked because something I’d felt a lot of hope about turned out to be nothing. I’m always cautious with my hope, especially about things that seems like long shots anyway, but I guess I was more hopeful than I thought this time, and the letdown was shockingly crushing. It’s just a work thing, not life or death, but sometimes wanting something really bad and working hard for it and then not getting it is devastating. My rational mind says it’s part of a learning process, but that’s easier to say than it is to feel when the letdown is fresh and the pain is raw.

I’m usually not one to eat my feelings, but last night, after a healthy dinner at the local co-op, I eyed a big bag of ranch-flavored tortilla chips. In mild defense of my transgression, the chips were organic (LOL, I know, still fried junk). I decided that if I took a long walk and still wanted them, I’d allow myself to stray from my normally strict diet and indulge a little. The walk didn’t help lift my sadness, and I walked back to the co-op with fifteen minutes to spare before closing and plunked down $2 for the bag of chips. Then, of course, I ate them all. Every single one of them, even though the serving size was for a family.

It was a rare slip for me, and I felt the familiar guilt of eating crap while dealing with chronic health problems, but damn, those chips were good. I tried pouring some in a bowl and eating just that amount, but it wasn’t long before I dumped the whole bag out and feasted. The free-for-all didn’t make the disappointment of the day go away, but I truly enjoyed eating some junk for a change, and that brief feeling of pleasure was a nice distraction.

I worried that I wouldn’t sleep much and would get achy from the processed food, but I ended up sleeping longer (and uninterrupted!) than I have in months. I didn’t even wake up to pee in the middle of the night, which was probably due to the massive salt load I put in my body with my chow fest. And when I woke up this morning, I felt better and less achy than usual.

I’m not advocating a junk food diet, but I think there’s a lesson here for me, and that is to relax and enjoy a treat every now and then. That’s something that can be hard for someone who feels guilt over poor dietary choices, but maybe my thinking should shift to allow more occasional treats. When I woke up this morning, I felt great, ran 4 miles in a thunderstorm, and am way less stiff and sore than usual. Cheers to chips, at least every once in a while.

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Feeling Better, Looking Ahead

sunrise run
Sunrise run along the bayou.

I had a rough September, starting with a flareup of cervical dystonia. I’d been working out pretty hard for a couple months, and I suspect some of the exercises I did were too much for my neck. As I began to recover, I got a cold, and the next day got the stomach flu. It was almost comical except that I felt awful and got super dehydrated.

Now that I’ve been close to 90% normal (my normal), I’m increasing my exercise again. I got up at 5 this morning and went for a run, happy to avoid the 90-degree temps that will come later today. The sunset over the bayou was enough to encourage me to stop and enjoy it even though I knew I had limited time to run before the heat rose to a miserable level.
As I regain running strength, I’m alternating ten minutes of endurance training– slow, steady pace– with five minutes of speedwork– fast (for me) pace but not sprint. I’m comfortably up to 35 minutes of running each session, and I’m sure I could do more, but I don’t want to relapse into another battle with neck spasms.
I bought a new peanut, which is essentially two lacrosse balls joined to form a torture device. I hate using it, but it’s highly effective at breaking some of my cervical and thoracic spasms. I was super stiff and headed toward immobility last night, but the peanut came through for me and I feel much better this morning.
I’ve also gotten more dedicated to rolling, which I intended to mean I’m rolling twice every day, but what actually means I’m rolling about five days a week. I use a solid foam roller and it’s helping a lot to reduce the tension in my legs and back. Rolling the outside of my thighs makes my eyes water, but, like the peanut, the results are totally worth the temporary discomfort.
One of the weirdest, lingering effects of my September health issues is a major shift in my appetite. I lost four pounds when I had the stomach flu, and I’m pretty sure most of it was fluid loss. However, since then, I’m alternately ravenous for random food (like beans, rice, and salsa for breakfast!) and unable to finish my meals. I’ve been a mega-portion eater for many years, so this shift is very odd. I’m giving myself some leeway and allowing, within reason, whatever meals I want. I draw the line at pure crap, like the serious cravings I’ve been having for milkshakes, but I admit to eating corn chips and Mexican food for breakfast this morning.
I’m not one to wish time away, but I’m really looking forward to October. I hope the ridiculous high temperatures will finally drop. I can’t wait to actually feel cold when I walk outside. This October marks three years since my back started giving me major trouble, but I’m not dwelling on that anniversary. I’m ready to do some serious hiking and backpacking when the weather cools off, and I’m certain October will bring the cool breezes and nights that I crave.
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Three Weeks, Three Ailments

I’ve had a tough three weeks. Technically, a tough three weeks and three days. I woke up three Mondays ago completely unable to turn my head. It was nothing new, just an aggravation of persistent cervical dystonia, but I’d really thought my body was doing better than ever. I’d been feeling strong lately and had upped my workout intensity. I’d been lifting heavier weights than usual and doing more core work, especially planks, than I’d ever done in my life. I felt pretty great, all things considered. Then I woke up and couldn’t move my head.

My awesome chiropractor, who I’m truly not sure I can live without, helped set my vertebrae back where they belong. He found most of the issues in the thoracic spine, and it took a few days and multiple adjustments, but I started feeling normal (normal for me!) again. My talented PT friends worked on me, too, and after a couple sessions of Dolphin Neurostim, I was looking left and right without turning my entire body. I took a week off from exercise, which I hated, but I thought some rest might help me move on from neck trouble faster than usual. It seemed to work, and by day 8, I was walking comfortably for an hour and lifting a few light weights.

As the middle of the second week approached, my head was turning pretty well without chiropractor help, and I set my sights on returning to running and other challenging workouts. I actually missed planking and couldn’t wait to return to it. Then my throat got sore, a headache came on, and I was super tired. Symptoms of a common cold were alarming enough, but then I felt sick. Really, really sick. I spent the night throwing up and generally feeling like death. Every joint in my body ached. The next day, I was dizzy and exhausted and a nurse at a walk-in clinic said my blood pressure was 80/50 (hence the dizziness) and my pulse was 118. Dehydration is a scary beast.

I hate going to the doctor. Dealing with chronic pain and medical conditions has already required too much time in doctors’ offices, so the idea of going even for severe dehydration is off limits. Stubborn, stupid, whatever. We all make our choices. My wife bought me some crackers and Gatorade and we went home rather than to the hospital as the nurse suggested. One of the only bonuses about being that sick was it gave me the ability to sleep. I slept more the last several nights than I have in years.

After a miserable weekend, the stomach stuff and dehydration were under control, but the cold was back with a vengeance. My neck was super tight and painful again and I felt defeated. After three weeks of fighting one ailment after another, I’d lost three pounds and watched the visible muscles in my abdomen begin to disappear. I could tell my legs and arms were getting weaker, too. Everything I’d worked so hard for was literally wasting away. I allowed a five-minute pity party, then got out the Wii. There’s nothing like a hearty game of Wii Fit Plus hula hoop to make me feel alive again. I was stiff and sore, but it was great to get moving again.

My chiropractor loosened up my t-spine again, and I’m eating normally without any stomach trouble. Mostly all that’s still hanging on are the cold symptoms, plus the usual stiff neck. I’m so ready to be back to a full life. I charged up my old Garmin watch and am ready to go as soon as I can breathe through my nose again.

In the midst of all this, the weather has gotten cooler—finally. We still hit daytime temps of 90+, but the evenings are less humid and more tolerable. I’m really hoping that by this weekend I’ll be able to get out and enjoy the taste of fall in the air. One of the hardest things about being hurt and sick is being forced to take a break from life. I’m ready to get out and explore my corner of the world.

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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.

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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.

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Custom Bicycle for Painless Cycling

bike handlebar extender
Tall handlebars and a parrot horn. Yes!

I sold my road bike several years ago and bought a grandma cruiser. Cervical dystonia and three herniated discs made it impossible for me to comfortably get into an aerodynamic cycling position, but I didn’t want to give up biking after already sacrificing so much to chronic pain. The cruiser I bought is a hybrid bike with plenty of gear choices, and I added some skull stickers to make me feel better about riding a dorky bike. I love it, but until recently, the positioning was still off.

My neck gets very angry if I have any weight come through my left arm for an extended period of time, and the factory setup of the cruiser had me leaning forward too much. I raised the handlebars and lowered the seat as much as safely possible, but still no dice. The local bike shop fixed me up with a custom handlebar extender, and now I’m a much happier cyclist.

extended handlebars
Look how high the handlebars are in relation to the seat.

The extension piece itself is simple—a metal tube that allows the bike’s handlebars to sit up taller than they normally could. Unfortunately, the installation wasn’t so simple. All of the cables on the front of the bike were too short to accommodate the taller handlebars, so the bike technician had to put in all new cables. The labor took about an hour, but when the tech was done, I finally had a bike I could ride comfortably.

Exercising with fibromyalgia and chronic pain takes a bit of creativity, but if you’re committed, there’s usually an answer to most problems. I now sit so upright on my bike that it’s probably comical for people who see me pedal by, but I don’t care. I can ride without neck pain, and that’s worth the dork factor.

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I’m Ready to Swim

I’m so ready for warmer weather, and it’s only December! Right now I feel like a lot of my aches and pains could be resolved by warmer weather and a swim in the Gulf. One of my huge hopes for the new year is that I’ll be able to turn my neck to the side enough to breathe while swimming. I love to swim, but it’s pretty much impossible to swim without having neck mobility. Some people have suggested that I get a snorkel, but I don’t like the air that comes through one. It always tastes like plastic. If I can’t turn my head this spring, though, I just might buy one. Water exercise can be a very healing thing for me, and I love how it takes some weight off my spine. Warm water would be ideal!