Some of y’all asked what I’m eating these days. I thought it’d be easier to show some pictures with captions rather than making a boring list. I’m a true believer in fighting chronic pain and fibromyalgia with whole foods as the primary weapon. I stay away from processed food and almost never eat refined sugar. I don’t adhere to one specific diet but instead choose foods that make me feel good rather than those that make me sick. I almost never go out to eat, but when I do, I’m finicky about which restaurants and what I order. In general, I stay away from wheat, dairy, added sugar, and processed meat.
Keeping my core muscles strong has been a lifesaver. Not only am I able to run again, but I’ve started sleeping again because I’m not in as much pain when I lie down. My low back and pelvis and hips were in so much pain for more than a year that I was terrified it would become a lifetime issue.
I already deal with chronic pain and felt like I couldn’t stand a new addition to my pain resume’. The core exercises help my pelvis stay in proper alignment, which relieves the once-constant pain in my back and hips. The picture of my notebook shows what a daily core workout looks like for me. I change things up each day but always do the basics.
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 started a YouTube channel the other day, and I haven’t felt so un-technically savvy in a very long time. The upload was simple, but the rest was not. I’ve only posted one video so far but have big plans to put a lot of fibromyalgia-related stuff on YouTube in the future.
My first fibromyalgia video is about the hives, rash, or whatever is on my skin. I’ve had skin problems for many years– about the same amount of time I’ve had fibromyalgia, although the fibromyalgia wasn’t diagnosed until a couple of years ago. The new dermatologist I go to says the rash is guttate psoriasis, which is blessedly less severe than plaque psoriasis. My first YouTube video shows an outbreak on my torso.
I’d love for you to submit your ideas for a fibromyalgia YouTube channel. Ask and I’ll try to make sure you receive!
I work multiple jobs, none of which provide benefits of any kind—no insurance, no paid days off, no freebies. Other than health insurance, groceries can be my largest bill if I’m not careful. I’m a major believer in health food and clean eating, and over the years I’ve figured out what works best for my body. I stay away from gluten, processed foods, and added sugar. I’ve done Whole30 (a month-long challenge to go very strict paleo), been vegan, and been vegetarian. After all is said and done, I realized I function best on a mixture of the three. That may sound crazy—mixing paleo and vegan—but some of the basics are the same. Only whole foods. No crap. Vegan is a lot easier on a budget than paleo, and the extra carbs in vegan meals help fuel my long runs and hikes. Here’s how I eat clean, healthy foods on a very small budget:
Bulk bins are your friend. I got a hearty, organic soup mix full of barley and beans for only a couple bucks. If the same soup mix had been pre-packaged, I’d have paid a lot more. I added my own seasonings and the result was fantastic.
Communicate. Get to know the produce person in your market, and talk with the store manager. Ask them to split a head of cabbage if it’s priced by the pound, then only buy half since that’s all most people can use anyway. Find out what days certain foods are most likely to be discounted. I’ve saved a ton this way. My local co-op often has half-price produce on Sundays, and I get lots of organic mushrooms and salad greens for cheap.
Check for matching grants. Some local farmers’ markets get grants that double food stamp dollars. That means every EBT dollar buys $2 worth of food at a matching farmers’ market. You can eat clean, local food without blowing your entire month’s benefit on one shopping trip.
Don’t ignore frozen food. Frozen broccoli is some of the nastiest food I’ve ever put in my mouth, but other frozen veggies and fruits are delicious. I can usually buy frozen, organic strawberries for way less money than their fresh counterparts.
Use salad bars for meat. Organic salad bars often have cooked chicken breast as a salad topping. Organic meat is super expensive, but if you add some on top of a salad at a pay-by-the-pound bar, you can come out with a great meal for just a few bucks. I once calculated that I got a huge salad with lots of fancy toppings like red bell peppers and chicken breast for less money that I would’ve spent on one organic bell pepper. No kidding.
I have some great news! I’m able to run again. I’ve actually been running for a couple of weeks, but I waited to share until I was sure I was going to be able to return to running consistently. I took a picture of my watch this morning to help me document my celebration. That’s 40 minutes of running! This is a huge victory for me. I already feel my sanity returning and my thoughts clearing.
In other news, I’m battling hives again. Do any other fibromyalgia patients get unexplained skin issues? I’ve had two punch biopsies (ouch!) over the years. One dermatologist said the hives are an allergic reaction. To what, he didn’t know. The other dermatologist said I have guttate psoriasis. I tend to disbelieve both of them. Either way, my hives itch. They’re currently on my trunk, elbows, wrists, left breast, and right knee pit. Luckily they’re not nearly as bad as they have been in the past, although I wish they’d go away. It’s so much easier to deal with the hives since I’m running again. There’s something about running that makes me feel like I can take on anything.
I’m not sure what my next running goals are. I’m hesitant to make any new goals since I’m still just grateful to be able to get out there and run. The core exercises that I do every day have made a huge difference in my life. I’m convinced that increasing my core strength and stability has helped stabilize my SI joints. The spinal support offered by strong muscles is fantastic. And the proof is in my return to running. Planks suck, but they work. I have to be very careful with my movements to keep my back pain-free, but I’m running again, so I feel pretty damn good.
My throat was sore for days and felt like something was stuck in it. I looked in the mirror and saw a smallish white thing in my left tonsil, which I took to mean I was fighting an infection. But the next day I felt worse and wondered if the thing in my throat was the culprit. I’d read about tonsil stones before and was pretty sure I’d had a few in the past, but they’d mostly been annoying. This one hurt and I felt sick. If you’re easily disgusted, you should probably stop reading now.
After reading more about tonsil stones, I learned they’re fairly common and that people have all kinds of gruesome ways of extracting them. I’m not up for digging in my throat with a Q-Tip or a bobby pin—just a couple of the methods other people have used—so while I brushed my teeth, I eyed my bottle of Peroxyl. Gargling seemed like a way safer and less intense way of potentially ridding myself of the unwanted thing in my throat.
I leaned my head back and swished the Peroxyl around my mouth, trying as best I could to let it run over my tonsils without causing myself to choke or gag. When I spit out the mouthwash, my mouth tingled and little bubbles (probably from the peroxide, hence the name “Peroxyl”) covered my gums, teeth, and tongue. The tonsil stone was still there, although it felt a little different.
About thirty seconds after I’d spit out the mouthwash, I coughed heartily and felt something rock-like fly onto my tongue. I warned you this would be gross. I stuck out my tongue and saw what looked like a rotten tooth on it. I stifled a major gag and spit the stone into my hand. It was huge and disgusting. I couldn’t believe how hard it was. I guess those things really are calcified bits of bacteria and other nastiness.
My throat felt instantly better. I held the tonsil stone in my palm and stared at it, completely repulsed but fascinated. I took a picture of it and felt its rough edges. I did the unthinkable—smelled it—and it stunk like death. I suppressed another gag and threw the tonsil stone into the garbage.
I still feel a bit sick today, like I’ve probably had a bit of a cold, but most of my throat pain is gone. The tonsil stone was much larger than I thought it was from looking at my throat in the mirror, so it must’ve been very irritating to my tonsils. I’m pretty happy with my home remedy and very glad I didn’t try to excavate it with some sort of tool. Now I hope I don’t get another tonsil stone, but if I do, I definitely won’t smell it.
My friend Gloria was diagnosed with stage 4 breast cancer in 2008. She has been through surgery, chemo, and radiation, and continues to endure infusion therapy every twenty-one days to block estrogen from feeding the cancer cells. Right now, cancer lives throughout her skeletal system but is not in any visceral organs. She’s beaten incredible odds to survive well past doctors’ predictions. Unfortunately, her survival comes with a price—chronic pain. Gloria is an adventure-loving, free-spirited person who hopes her experience can help other people who are also fighting cancer.
What were your initial thoughts when you were diagnosed with cancer?
I can’t call it shock because I knew it was cancer when I first felt the lump. But the first time I heard the confirmation of my intuition—“you have breast cancer”—I went into a tunnel. I heard “you’ll need surgery and chemo,” and everything was muffled sounds outside my tunnel. All I could hear clearly were my thoughts: ‘This is it. This is how I will die.’
What would you want friends and family to know about helping a loved one newly diagnosed with cancer?
“I don’t know what to say” is ok. Even silence is fine. I didn’t want to hear anything but “I’m here for your” or “I’m sorry.” Or silence. Not “my aunt had cancer, you’ll be fine, or don’t worry.” I wanted them to just be there.
Do you have advice for new cancer patients to help them take care of themselves emotionally?
Don’t start spending too much time obsessing on the internet. Don’t look up survival rates. Everybody’s different—when you first get diagnosed, you don’t even know what you’re dealing with. You need to process that you’ve been diagnosed with cancer, and that’s it. Things will change. You might get discouraged about something that’s going to change anyway.
Have there been any happy surprises since being diagnosed?
What I call my angel experience. I was going through chemo and had to go to physical therapy to get my right arm moving again. A lady walked up to me and said, “do you have breast cancer?” And I was pissed at her for asking because it was obvious that I was weak and bald. But then she said, “I’m a twenty-year survivor, stage 4, in the bones, thoracic, sternum, cervical, and lumbar. You are going to be alright.” The same shit I have! Then she walked away and disappeared and I never saw her again. That was enough to encourage me. That was a real turning point. I’d started out real positive, but then I started sinking. And then she showed up.
If you meet someone who just found out she has cancer, what would you want her to know about how to handle day-to-day life?
Keep a journal. It’s important to write down how you feel. I think the hardest part is listening to everybody’s bullshit. You have to just not listen to too much and try not to look too far ahead.
What’s one of the best decisions you’ve made since your diagnosis?
To just live in the moment. Not to worry about down the road, because you can’t. Nobody’s going to get out alive. Honestly, not having to go to work anymore helps. I don’t have all that stress. Most days I’m in a lot of pain, and when I worked as a nurse, I couldn’t lie down and rest when I needed to.
What’s your favorite part about survival?
I can spend each day appreciating what I have. I appreciate time. I get up and sit on the porch and listen to the birds. And being with Ruby, my dog, is my life. She’s my baby.
Sleep is a sticking point for a body in chronic pain. It’s what I crave the most—to just lie down and close my eyes and not wake up for hours—but it’s often a craving left unsatisfied. Most mornings begin one of three ways.
I wake up as the dogs rattle around in the kitchen, sniffing for errant kibble under their blankets and bowls. I take stock of the situation—is it really morning? How much sleep was I able to get? What muscles are spasming? Am I able to turn my head or is it stuck in one direction or the other? I’m stiff, sore, and need to get out of bed quickly before I can’t get up at all, but I’m thankful to have gotten a few hours of sleep.
Or, I wake up at 3 a.m., my hips throbbing, an electric-like pain shooting across my pelvis. My neck is stiff, my leg muscles are rigid, and nerves light up throughout my body. I stand up in the dark because I can’t stand the pressure on my body as I lie on the bed.
And there are the mornings that are merely extensions of the previous night. Those are the hardest, the ones where no matter how many times I change positions or alternate between the bed and a camping mattress on the floor, I can’t get comfortable. I’m exhausted but in too much pain to sleep. Midnight, two a.m., sunrise, all come and go. Eventually I get up, defeated by my own body, and try to start another day.
I used to take sleep for granted. In college, I’d fall asleep on a cheap blow-up mattress and wake up feeling like a million bucks. Before chronic pain, if I said I didn’t get enough sleep, I meant that I’d had four or five hours of rest. Now, those hours are days. My record is ninety-six hours without sleep, and by the time I finally took enough muscle relaxers to knock myself out, I was shaky and cold and thought I might die.
I hate prescription medication. I use vitamin B supplements, sublingual melatonin, and organic tea to try to sleep. But occasionally, on nights when nothing else works, I reach for a bottle of pills. It’s one of the worst kind of defeats—to admit that my body is attacking itself, trying to stay awake through the hours meant for sleep.
I try to look at chronic pain as a test, a puzzle that must be worked with through trial and error until my body and I come up with a livable solution. I exercise daily, often spending an hour working on my core muscles to help alleviate the pressure on my spine. I eat a restricted diet, avoiding sugar and corn and gluten and a lot of other things that seem to inflame my body. I have a pretty good survival system, but chronic pain is a fulltime job. Every bite of food, every push of a heavy door, every reach overhead to pull on a fan—every single thing has to be carefully planned, because a wrong move can leave me debilitated for days or weeks.
Sometimes, when I’m able to sleep, I drift off to lucid dreams in which I’m running half marathons again, or scoring goals on the soccer field, or finishing my first triathlon. They’re beautiful dreams, but because they’re lucid, I know there’s a certain sense of falsehood in them. Willpower and hope keep me fighting through the sleepless nights. I may not be able to run again yet, but I want to, and desire is a powerful thing. I get mad sometimes—a resentful, ugly mad—but I try to channel that anger into healing. Chronic pain owns the mind as much as it owns the body, and staying hopeful that one day I’ll be okay is my way of telling it to kiss my pain-free ass.
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.