Posted on

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!

Posted on

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.

 

Posted on

Tuft & Needle Mattress Review

I bought a Tuft & Needle mattress last week and it arrived yesterday. I’d heard great things about their mattresses and ordered one to try. I hate the high pressure and high prices in mattress stores and have never felt that lying on a bed in a showroom gave me a realistic impression of how the mattress would perform at home. Tuft & Needle has a great guarantee and their mattresses are made in the US. Their prices seem fair— not dirt-cheap, but they shouldn’t be, since they’re good quality— and they use a patented type of foam that’s supposed to be awesome. The mattress arrived within a few days, as promised, and was tightly rolled in plastic for shipping. It was heavier than I expected, but two of us were able to get it into the house and out of the box.

After we cut away the plastic, the mattress expanded. It was like magic. Not only did it get much bigger than its shipping size, but it quickly took nice, firm shape. Tuft & Needle advises waiting 2-3 hours before lying on it, so I let it air out in the bedroom while I went for a long walk and played with my dogs. The mattress had a bit of an odor, but nothing like the horrific, chemically smell I’ve experienced with other new mattresses. When it was time for bed, the odor was only detectable if I put my nose against the mattress.

I stretched out on the mattress with high but cautious hope. Sleeping—especially getting comfortable at night— is still a major problem for me. I’d done a two-hour private yoga session that morning to try to work on my rigid legs, and my back was aggravated from the new movements. The Tuft & Needle mattress had to be perfect if I was going to get any sleep at all.

And it was perfect. I mean, literally perfect. I still had to stack pillows under my knees to keep my back comfortable, but that’s no fault of any mattress. Once I arranged myself into my usual sleeping position, I laid there and closed my eyes and waited for discomfort that never came. The mattress was absolutely awesome— the best surface I’ve slept on in many years.

I needed to shift to my side once during the night, and because the T&N is quite firm, I had to make sure the fatter part of my cervical pillow was stuffed under my neck just right. Twenty seconds or so of pillow placement yielded good results, and I slept for another two hours without disturbance.

When I woke up this morning, my usual aches and pains weren’t cured (and I didn’t expect them to be), but I’d slept well and actually look forward to going to bed tonight. I haven’t looked forward to going to bed in as long as I can remember, because it’s usually a disappointing battle that leaves me stiff and in pain. Assuming the T&N keeps up its quality, I can see where sleeping on it could be life-changing.

This afternoon, I contacted one of their customer service reps to ask if they make camping versions of their mattresses. They don’t (yet?!), but the rep was not only instantly available via online chat, but extremely helpful and polite. What a relief, and a departure from the norm for a lot of purchases— a good product, good customer service, and made in the United States.

I have no connection at all to Tuft & Needle. I paid full price for my mattress and only wrote this review because I hope other people will read it and potentially find something that may help them sleep comfortably. Night-night, y’all.

Posted on

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.

Posted on

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.
Posted on

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.

Posted on

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.

Posted on

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.

Posted on

Cupping for Pain Relief

cupping bruise
It’s like a circular hickey on my calf.

Try to imagine giant leeches sucking your legs for five minutes, and you’ll get the general idea of what goes on during cupping. I tried cupping to help increase circulation and aid healing in my damaged leg muscles, and for a week I sported round bruises on my calves and thighs.

I’m always up for trying a new way to relieve chronic pain, even if the treatment leaves me looking like I was attacked by an octopus. My back and hip are still giving me fits, despite having had some recent good results with specialized physical therapy. I guess this is the nature of fibromyalgia—a few steps forward and at least one step backward.

The actual cupping experience was a lot more painful than I imagined it would be, but after a minute, the pain eased up a bit. I stayed still on a treatment table for five minutes while the cups did their magic, and by the final minute, my legs were still uncomfortable, but not nearly as bad as the first minute.

When the PT opened his case and showed me rows of cups and an apparatus to make them suction to my legs, I knew I was in for a unique experience. I didn’t get the results I’d hoped for—mainly reduced pain—but at least I tried. I’ve heard that some people swear by cupping, but it’s not for me. My favorite healing tool is a lot more soothing—soaking in the hot tub.

Posted on

Recipe: Miso Soup with Vegetables

miso soup
Broccoli is my favorite vegetable.

I felt exhausted yesterday after a two-and-a-half-hour workout that included an hour of very challenging physical therapy for my back and hip. Dealing with chronic pain is a fulltime job. Workouts geared toward rehab aren’t hard like a long run, but they’re very fatiguing and difficult in their own way. When I got home, I felt like I needed a nutritional boost ASAP. I raided the fridge and decided to make miso soup with fresh vegetables.

You can use whatever vegetables you have on hand, and if they’re from an Asian market, even better. I wish I’d had shitake mushrooms, but white button did fine. The one thing I wouldn’t compromise on is organic miso. I’ve read scary things about conventional soy products. This is how I made my miso soup:

Ingredients

  • 1 quart water
  • 1 head broccoli
  • 2 medium carrots
  • 2 large mushrooms
  • 2 large pieces of wakame (sea vegetable)
  • organic white miso to taste

Directions

  • Chop vegetables while water boils in a pot.
  • Add carrots to boiling water for a minute or two, then add remaining vegetables.
  • Use a ladle to remove some of your boiling water into a large glass measuring cup. Once water in cup is hot but not boiling, add miso and whisk until it moves freely.
  • Boil veggies only a couple of minutes to keep them firm, then remove pot from heat.
  • Add miso broth back to soup pot and stir.
  • Serve warm.

My brother-in-law loves miso soup and often adds fresh corn, Brussels sprouts, and other goodies. I was fascinated the first time I saw miso soup because it looked like it was alive. When the miso disperses in the warm water, it looks unlike anything else I’ve ever eaten. I’m used to it now, but still enjoy the show when I stir my soup.