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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I have three things to celebrate today. Nothing extraordinary, but focusing on the positive always makes me feel good.
I had a good run this morning. A thunderstorm was building, so the air was cooler than usual and clouds covered the sun. Lots of birds sang in the trees, and I saw a redheaded woodpecker gather nesting material. It was a nice break from the sauna-like atmosphere of Florida in the summer. There wasn’t anything spectacular about today’s run, but I always appreciate every chance I get to explore the world on foot.
I tried out some new Balega socks. I got them on clearance, which is the only way I can afford them, and WOW, they’re nice! They held up well to a five-miler through several parks. They didn’t slip at all and my feet felt great—no blisters, no temperature issues, no constrictive fit. I’m glad I bought two pair.
My puppy is growing up and becoming a great dog. She has truly boundless energy, and she’s energized the whole household. There’s nothing like watching a puppy greet every day with excitement and curiosity. She’s sweet and soft and makes adorable groaning sounds when she stretches. The vet said I can start running with her when she’s eight months old, which means we’re on a short countdown. In about two months, I’ll have a new running buddy!
Our local co-op was full of beautiful, fresh foods today. I brought home several bags full of organic fruits and vegetables and made lunch. I have a weakness for commercial salad dressing, but otherwise my lunch was about as healthy as food gets. I try not to take for granted how lucky I am to live a life that allows me daily access to clean food. Today’s veggies were too pretty to keep to myself!
I did my first solo hike of spring, and the state forest was exactly what I needed. Pitcher plants were in bloom, a young water moccasin let me pass without incident, and the swamp was loaded with turtles. I love being in the woods without smog and cell phones. I didn’t camp this trip, but I hiked for three hours and wished I could’ve stayed longer.
I recently saw a bumper sticker that said “you live your life how you live your days.” It’s simplistic and true. I tend to spend a lot of time regretting past mistakes and anticipating the future. The forest always humbles and grounds me and reminds me to take deep breaths and appreciate the gifts in my life instead of focusing on stress.
It’s easy to feel stuck. Career worries, astronomical health insurance premiums, past choices that haunt the present… my list of ulcer-inducing thoughts goes on and on. But doesn’t everyone’s? The choice I have—every minute of every day—is this: what am I going to do right now?
Feeling stuck, I think, is a symptom of ignoring my blessings. Is my life perfectly how I want it to be? No, but I’m damn lucky for the love and adventures that surround me every day, and I feel better physically and emotionally when I celebrate the good things rather than wringing my hands over the bad.