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.

Inspirational Podcast

restoration row podcast victoria stopp
Not only does the team at Restoration Row produce a podcast, but they also create art. This is the illustration they did for my story!

I recently had the honor of being interviewed for Kaigo Health’s new podcast, Restoration Row. Their CEO, Uzochukwu Chima, and I talked awhile, and then an actress named Megan Dunlop performed a reading from my book. How cool! The book journey has been quite a ride so far.

Restoration Row has some really interesting and inspiring stories, and I highly recommend checking it out on iTunes or Stitcher. Click here for my episode, but definitely check out all the others while you’re there. The talented production crew will upload a new episode often, so check back soon for more.

Book Sale!

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.

I got word from my publisher that the Kindle version of my book will be temporarily discounted. Now’s your chance to snag the e-book for less than the price of artisanal coffee! Click here to check it out.

My book, Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain, is helping me spread the word about those of us living with less-than-ideal health. I have no idea where the journey will end, but I’m happy with all the chances I’m getting to advocate for chronic pain patients.

As for my health, I’m having ups and downs as usual, but I keep seeking new information and trying new solutions. I met two awesome chiropractors while I was in metro Atlanta for book tour events, and they gave me invaluable feedback after taking specialized x-rays to analyze my posture. Since meeting with them, I’ve been able to return to running, albeit carefully and not easily. I work hard every day to correct my excessive lumbar lordosis along with the other postural misalignments they showed me on x-ray. Good health is definitely a work in progress, but the work pays off slowly and surely.

 

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.

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.

 

Sciatica Pain and Sleep Positions

bike
New bike!

I’m going through a weird stage with back pain. It’s not new, but it seems especially magnified in recent months. I’m stronger than I have been in a long time, despite being almost completely unable to run. But almost magically (and not in a good way!) when I lie down in bed, the pain starts with a vengeance. I don’t know exactly what’s happening, but even my usual trick of elevating my legs isn’t helping as much as it used to. Something is definitely shifting when I get in bed, and it’s happening no matter what mattress I try— new, old, foam, springs, etc.

I get sciatica-type symptoms that start with a burning/tingling pain in my right butt cheek and trace down my leg to the hamstring, lateral thigh, and sometimes all the way to the heel. Next comes intense pain in the right front hip, and once it starts, it’s very hard to stop it.

I got a new bike— a cruiser with a very stable seat to keep my SI joints from getting angry— and can ride it without aggravating my back, which is awesome. It’s easy on my neck, too, since I sit upright in the seat rather than leaning over to reach the handlebars. I walk 5 or more miles every day, lift light weights, do a core workout like it’s my religion, and row a mile on our awesome Concept2 machine. For these reasons, I’m pretty strong, although I really want to return to more freedom and running. The lack of comfortable sleep position is maddening, and the pain can be crazy-making. Sometimes I change positions for three hours before I can go to sleep, but other times I get lucky and only move around for about an hour before conking out. It’s very frustrating to go to bed exhausted but unable to sleep because of pain. Lately, I sometimes have no pain at all until I lie down, which is quite bizarre.

No matter how long this shit goes on with chronic pain, I’m never able to get to used to it. There’s still some huge part of me that thinks it’s temporary, or maybe fake, despite making some serious strides toward peace with reality. But when I watch soccer on TV, I still feel the field under my cleans, the ball against my feet, and the rush of adrenaline from scoring a goal. I’m not sure that longing to play sports, to compete, to be free, will ever go away.

Regenerative Medicine

I’m highly skeptical of our modern medical industry— not because of practitioners so much as insurance companies’ influence on patient care. I’ve heard of boutique medicine, which as I understand it is essentially cash-pay for individualized treatment outside the bounds of insurers, but I’d never had experience with that type of doctor. I already pay more than my mortgage every month for our health insurance, then still owe co-pays and deductibles if I actually use the insurance, so the idea of paying fully out of pocket isn’t appealing at all. But desperation breeds willingness to try new things, so I went to an open house for a regenerative medicine doctor who practices outside the confines of insurance interference.

The facility was nice and clean, but not overly ornate. It had less of a clinical feeling and more of a personal vibe, and the doctor and physician’s assistant were welcoming and engaging as they greeted visitors. Instead of a waiting room full of literature about prescription drugs, I saw holistic supplements and bone broth for sale. The doc and PA looked extremely fit and healthy, and while of course looks can be deceiving, as an athlete, I was impressed that they appeared to work hard for their physiques. Cautiously, I began to feel hopeful and wonder if I’d finally found some real medical help. I registered for my first appointment, then went home to fill out a dozen pages of online paperwork.

The questions asked by the clinic’s online health history program were shockingly personal, in a good way. Even for the gender identifier, their were options beyond just male/female. I’m not transgender, but if I were, there was a space to identify as myself. What a breath of fresh air! I listed the various diagnoses I’d received over the years (fibromyalgia, cervical dystonia, guttate psoriasis, etc.), but also answered questions about my diet, exercise, and sleep habits. The forms were more thorough and probing than anything I’d seen at an insurance-accepted place.

A few days later, I sat in my truck outside the office and tried to calm myself with a few deep breaths. I wasn’t nervous about what would happen at the appointment, but I was very nervous that even the cash-pay, uninhibited-by-insurance doctor couldn’t help me. I’d put so much hope in the hands of medical professionals in the past and usually been slapped with disappointment, so I’d mostly quit seeking medical interventions. But May was a really, really hard month for me, and I needed help ASAP.

My appointment was over an hour long— 60+ minutes with just the doctor and me! No interruptions, no hurried feelings, no bullshit. It was more like a conversation than a medical appointment, even though he examined my back and talked about symptoms and tests and nutrition. I pulled out my usual stack of photographic evidence— pictures of my ghost-white fingers (Raynaud’s), rash-covered torso, and a few other oldies-but-goodies. He listened, talked, and drew diagrams on a dry-erase board. Unlike every other doctor’s appointment I’ve ever been to, I never once felt like I was keeping him from something more important than our time together.

I left with orders for comprehensive blood work and a kit for finger-prick testing and urinalysis. The doctor would start investigating from the most basic upward, and would look at everything from my cholesterol levels to potential food sensitivities. Only one lab in town could perform the tests, which told me how out-of-the-ordinary this doctor’s protocols were compared to most MDs. The first test was SpectraCell’s CardioMetabolic Panel (plus a few other things, like hormone levels), and next week I’ll find out the name of the next test.

I also bought several supplements that he recommended, including a highly concentrated and purified version of fish oil capsules. His goal is to attack the systemic inflammation in my body, and while he looks for the cause through blood work, he wants to knock it down as much as possible in the meantime. And no NSAIDs! That was one of the most shocking things he said. I’ve been on and off (mostly on) the NSAID train for so many years, but he’s adamant that NSAIDs actually inhibit healing. I’m sure there are skeptics, but after years of NSAIDs and chronic pain, I’m very willing to try new theories.

I’ve had one blood draw already and will go for the next one next week. Once the results come back, maybe I’ll finally have a path to wellness. Of all the things I’ve tried over the years, this line of medical treatment seems to make the most sense, and for the first time in a long time, I’m hopeful again.

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.

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.

Stabilizing SI Joints for Air Squats

squat si joint
No, I’m not about to go to the bathroom in my yard. I’m descending into a squat while holding my SI joints!

My re-acquired (or earned!) ability to squat is absolutely awesome. Many years—yes, years—of persistence, hard work, and dedication finally paid off the day I realized I could finally squat again after so much time of squat=excruciating low back pain.

Since the breakthrough day, I’ve slowly added squatting back into my workout routine. The benefits, both psychological and physical, are obvious already. I have more energy because I feel like I’ve accomplished something major. My workouts are more challenging, in a good way, because I can squat. I’m better able to strengthen my body, which helps keep my joints safe and stable. And I’m so, so excited!

My squats come with a caveat. I’m up to sixty air squats in one workout, but I have to do every single one while using my hands to hold my SI joints in place. If that sounds weird, I promise it looks weird, too, but it works for me. I dig my fingers into the divots near the joints that attach my pelvis to my spine, apply pressure, and squat without pain. I can’t go beyond parallel without sacral nerve irritation, but I can squat! I can squat!

Did I mention I can squat again? J My newfound squatting ability has injected life into my strength-training workouts. I’ve recommitted myself to doing as many resistance exercises as my body will allow, and I feel great. My posture is already improved, and I can hold my puppy with more confidence when she pulls on her leash. I’ve been doing a good core workout plus basic arm weights for quite some time, but squatting has really reminded me of how much a strong body can protect itself—even when it needs to protect itself from itself (thanks, autoimmune issues).

I can’t add weight to my squats since my hands are busy holding my SI joints in alignment, but I have faith that one day I’ll progress. Just the fact that I can do the basic movement again is a huge victory. Every time I squat, I smile. It’s a great feeling to be able to squat, and I’ve worked hard and long to earn it.