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.
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 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.
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.
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.
I’m curious what you do when you want to do something so bad but you know it’s potentially disastrous for your health. Bottom line—with every fiber of my being I want to return to running, but I’m scared to death of the post-run nighttime pain that made me howl like a wounded animal the last time I ran.
When I see people running, I feel a mixture of hope and bitterness and excitement and disappointment and jealousy. I’m happy for them that they get to experience the joy and challenge of running, but I desperately want to return to one of the last things I had to give up. Soccer is unrealistic. Tennis is probably unrealistic, too. Same with rollerblading. But running was my holdout, the final thing I kept for myself for peace, clarity, adventure, and release.
My internal debate gets more heated every day. I’m walking several miles (and sometimes as many as 5 hours) daily, so it seems like running a few minutes in the midst of all that walking wouldn’t be a big deal. But every time I almost embrace freedom and take off, I think about the way my hips and back felt the night after the last time I ran, and I keep walking instead.
Is there anything you’ve given up for fibromyalgia that you’ve reclaimed? If so, did it come with a price, and is the price worth it?
After ditching Lyrica, I resolved to do whatever I could to stay off prescription drugs. Very rarely, I took one Skelaxin for muscle spasms. The side effects weren’t worth it most of the time, but sometimes I would be so bad off that I had to take one. As the one-year anniversary of my back and hip issues neared, I couldn’t take the daily pain and stiffness anymore. I made an appointment with the doctor who’s worked on my neck in the past. He’s smart, isn’t afraid of the latest medical technology, and perhaps most importantly, he actually spends time with his patients and listens like a human rather than a hurried robot. Unfortunately, those attributes make it very hard to get an appointment, and I waited two months despite being an established patient.
When I did finally see him, he examined my back and hip and told me a few things I already know, like I have tight muscles and joint laxity. He decided to order a lumbar MRI, which wasn’t a surprise. He also talked me into filling a couple of prescriptions because he was very worried about my high pain levels and lack of sleep. I left his office with two scripts I’d never heard of before—Piroxicam and Tizanidine.
I thought I might not fill the drugs, but pain wore me down and I headed to the pharmacy. I figured I could try them once or twice and get off them quickly if they sucked. Piroxicam is an NSAID pain reliever and Tizanidine is a short-acting muscle relaxer. I was given instructions to take the Piroxicam once per day and the Tizanidine up to three times per day. I took one of each the first night, and was asleep within an hour.
Going to sleep quickly is a big deal with a body wracked by chronic pain. Hell, going to sleep at all is monumental. When I woke up the next morning, I didn’t feel hung over at all—I just felt better. I felt genuinely rested, unlike the crappy, forced sleep that comes from some drugs.
For several days, I took one Piroxicam in the evening and one Tizanidine before bed, and I felt great. I hiked 21 miles one weekend, and began to feel hopeful about a mostly pain-free back, neck, and hip. As always, I follow a healthy diet and use my hot tub as much as three times per day. The good food, warm water, and new prescriptions gave me a feeling of freedom from pain, and it was priceless.
That feeling was also short-lived. After almost a week, I noticed my back pain was getting more intense again, and my neck felt badly out of alignment. This seems to be the curse with my fibromyalgia—something new helps for a little while, but before long, I’m back to hurting.
I took a break from my nightly muscle relaxer routine and didn’t notice much of a change. However, I’m now on day two of no Piroxicam, and I feel like crap. I haven’t decided yet if I’m going to start taking it again, but I’m leaning toward yes. I’m scheduled for the MRI this afternoon, and if I get stiff having to lie still for it, I’ll probably come home and pop a Piroxicam.
Have y’all tried either one of these medications? If so, what’s been your experience? I’d love to hear from you.
I’ve been waiting on an appointment with a specialist for months, and the week was finally almost here. I hate going to doctors’ offices, and I hate planning my life around appointments. Mostly, I hate not being well. But the reality of not being well means spending a significant amount of time at the mercy of doctors and their scheduling staff. I called to confirm my appointment a week in advance because I’m driving five hours and spending the night in a hotel to see the specialist. The receptionist casually informed me that the doctor would be “unavailable” that day.
Unavailable? I asked her why I hadn’t been notified, and why I had to be the one to confirm the appointment, only to find out it was cancelled. She didn’t give me a decent answer, but said the doctor could see me the following week. I explained that I was coming from out of town, that the hotel was reserved, and I’d already made arrangements with my boss. I might as well have been talking to a toadstool.
I told the receptionist that I’d need to check my calendar and see if I could work something out to change all of my plans and come the following week. She said that was fine, and that the office would be open until 5 p.m. I called back within a few minutes to say yes to the later appointment, and was informed that it’d been given to someone else, and the next available appointment was in mid October. My thought: “Oc-fucking-tober???” My words: “but you guys were the ones who cancelled my appointment—without even telling me—and now I have to wait MONTHS to reschedule it?”
After an absolutely useless and maddening conversation with the receptionist, I asked for her manager. She said the manager was in a meeting, which felt dishonest at best. I asked her if the manager would call me back today, and she said yes. Of course, no one called me.
I understand that life happens. Things come up, and maybe the doctor had to schedule some sort of life-saving surgery for somebody. Or maybe he got a deal on an island vacation. I don’t really care. What I care about is the complete shit for customer service and the lack of decent resolution. At this point, I don’t even have another appointment scheduled because the manager must be on major overtime, as this would be the sixth hour of the meeting she was supposedly running.
It’s inexcusable when people are sick or hurt and doctors and staff act like it’s no big deal to mess around with the schedule and drag out the wait for months. We patients have so little power already. We’re in pain, we’re miserable, we’re frustrated. To have an appointment cancelled is bad enough, but to be made to wait so long after already waiting months is inexcusable. Unfortunately, there’s nothing we can do. If we need a specialist, as I do, there’s nowhere else to go. I have no words for the level of frustration and anger and disgust I feel, and perhaps the worst part is, no one in the doctor’s office seems to care a bit about how their decisions impact patients’ lives.
What supplements, if any, do you use to improve your health or alleviate symptoms? I’ve experimented with lots of them, and switched brands fairly often. Currently, I take a lot of magnesium to help with muscle spasms caused by dystonia. I also take fish oil, melatonin, and cal-mag-zinc at night. I don’t take a multivitamin because my diet is so clean that I don’t feel like I need one.
For fibromyalgia and/or dystonia flare-ups, I keep Crystal Star Natural Muscle Relaxers on hand. They don’t work wonders, but they also don’t make me turn into a useless zombie like prescription pills do. I tried Curcumin but got no relief, so now I just include a decent amount of turmeric in my diet (just in case it works over time), which is essentially what’s in Curcumin.
I can’t underscore how much I hate prescription drugs. Even though it’s often impossible to live without them, I’ve been so beaten down by side effects in the past that it now takes a very, very bad day to make me turn to prescriptions.
Remember the song Maybe God is Tryin’ to Tell You Somethin’ from The Color Purple? I made my return to running today after an almost two-month break because of my hip. I’d been jogging along for about forty-five seconds when the sky broke open. I’d been looking forward to trying to run for so long and have had so many setbacks over the years, and I’m not very good at giving up. So I kept going, even when the flashes of lightning and blasts of thunder got closer together, which I’ve read means they’re getting closer to me.
At minute 13, lightning came down with a massive, simultaneous thunder clap. It was more like an explosion than thunder and lightning. I jumped into the middle of the road (not the best solution) and hollered. The hairs on my arms and neck felt like cactus spines, and my teeth felt like they were buzzing. “God is tryin’ to tell you somethin’” got stuck on repeat in my head. I changed course for home.
I made it 17 minutes before deciding not to overdo it with my comeback. My rain-soaked clothes are airing out on the porch, and my hip is throbbing, but it was throbbing before I left for my run. Considering I got caught in one of our famous Florida summer thunderstorms, ran longer than I expected, and didn’t end up a scorched piece of meat, I’m pretty happy. If no one can help me with my pain and spasms, I might as well live and die how I choose. These days, I feel like I can survive anything (until I can’t).
“What the hell is dystonia?” I’ve heard that question enough times to get rich if I were paid to answer it. In a not-very-scientific nutshell, here’s my definition.
Dystonia is a condition that causes intractable muscle spasms that result in pain, limited range of motion, and often bizarre postures. Those spasms and postures and pain make it hard to do anything normally. I have cervical dystonia, which means my neck muscles are very tight—sometimes so tight that I can’t do anything but lie flat on my back and yell curse words.
Dystonia can be in different parts of the body, and I’m afraid mine has spread to my right hip. Some days I can’t walk normally, although that’s usually remedied by forcing myself to walk until my gait straightens out, which sometimes takes an hour or more. A few weeks ago, I had debilitating calf spasms in both legs, and I had to crawl to get to the bathroom. I upped my magnesium dose and have thankfully had no more calf problems, although I stretch them obsessively. I’m headed to yet another specialist five hours from home in August.
Sitting is one of the worst things I try to do. I stand whenever possible, often through meals and all day at work. I also have to be very careful with my head and neck. I sold my road bike a couple of years ago in favor of a “grandma” hybrid, because the aero bar position was impossible with cervical dystonia. Now I can ride my bike as long as my hip allows me to sit, or as long as my legs can handle standing while pedaling.
Some people have such severe dystonia that they are stuck twisted sideways, or an arm or leg (or both) are flexed abnormally and locked in a way that looks impossible. I’m one of the lucky ones, although it doesn’t feel like it sometimes, which brings me to my final non-scientific definition of dystonia: it is an unpredictable, life-changing bastard that can make you a prisoner in your own body.
My rather cynical definition aside, I refuse to let dystonia lock me in bed. When I wake up and am slow and stiff, I either go straight to the gym and get on the elliptical (the weird movement of that machine loosens my joints) or walk around the neighborhood. Exercise doesn’t help the pain very much, but it definitely increases my mobility. It’s also a huge psychological victory to be able to still do something I want to do even when my body doesn’t want to cooperate. There are some days when I can’t do much of anything besides feel like a leech, taking up space and resources, but I can almost always force my body into walking.
I recently found the Dystonia Medical Research Foundation, and it’s a pretty awesome organization. Check out their website if you want more information. I’ve been sitting too long, and I have to go for a walk now.