On the third night, I settled into bed after my husband and couldn’t get properly situated. After a few minutes, I realized why: my now-asleep husband had stolen my Eden pillow and replaced it with his years-old foam pillow. I retrieved my own pre-Eden pillow from the closet and eventually dozed off. In the morning, he was unapologetic and said he’d had an incredible night’s sleep.
Read MoreMany thanks to Patrick Young of Able USA for writing this guest post. Check out their website and great resources at www.ableUSA.info.
Being diagnosed with a condition that causes chronic pain can be a scary thing, especially with new guidelines that recommend avoiding or limiting the use of opiate pain medications. How are you going to manage pain so you can keep living life? Without great medical treatments for chronic pain, you may feel like this question looms large.
Read MoreI’m better now, and I want to do everything. But sometimes I’m so desperate to do absolutely everything I desire that I end up lacking the energy to do anything at all. And then I feel crummy about spending the evening laying in bed watching Netflix just like when I was sick (even though it’s for entirely different reasons and has absolutely nothing to do with being sick). Arg.
Read MoreIt's so hard to accept any bad days after suffering so many bad years. I think that, as my pain continues to recede in my rearview mirror, that will become less challenging. With time, I expect that I'll even come to appreciate the occasional "down day" with some minor ailment. But for now, I'm desperate to enjoy my still-fresh health.
Read MoreHealthcare providers may be aware of the presence of yellow flags in a patient’s history, such as a major accident, depression, catastrophization, or prior trauma or abuse (to name a few), but not consider it related to the patient’s clinical presentation of pain. But it is. Prior pain experience shapes pain perception.
Read MoreAnyone who’s battled chronic pain or invisible illnesses knows the chorus too well: “But you don’t look sick!,” or “But you look so healthy!” The way people look and the way people feel can be vastly different. And none of us should ever feel that it’s appropriate for us to comment upon, criticize, and judge the conduct of others based on outward appearances.
Read MoreI know that the way I’ve changed has been hard for some of my friends. Not everyone who befriended my overachieving, high-charging self in our twenties had bargained for a kale-growing, vaginal-health-preaching, yogi friend in our thirties. I get it. I changed a lot, and so have my friends.
Read MoreI thought I could “start fresh,” making a clean break with my pain-riddled life and beginning the pain-free chapter. But my reflection since my pain faded away have taught me that there are no clean breaks. Our lives are fluid, and our experiences color us. So today, I’ll admit that my pain changed me. And I’m working to be OK with that.
Read MoreI think we as patients would often be better off with no medical intervention. Because not all "intervention" counts as healthcare. And yesterday, while I saw a doctor and received an exam and had some tests run, I wasn't cared for. And it felt like shit.
Read MoreExercise feels good, it’s empowering, and it’s taught me to be in-tune with my strengths in a way I didn’t realize possible. I’ve formed friendships, gained confidence, and found community. And, had I listened to those providers who long ago told me I should live more gently, I would’ve missed out on the entire experience.
Read MoreMy months at the dog daycare were some of the most powerful in my recovery. When I started work, I struggled with the basics – keeping a routine, maintaining enough energy to get to work, and learning new tasks. The job was fun and challenging; it was manual labor, and it gave me confidence in my strength – and, importantly, in my ability to integrate my strength into my responsibilities. Previously, I’d kept the two separate: my responsibilities lived in my laptop, which I used from the security of the sofa; meanwhile, my strength lived at the yoga studio, but I didn’t push its limits outside those walls. This job, though, combined the two, and it taught me how to harness my energy and [literally] play well with others again.
Read MoreToday, as I ran from my physical therapist's clinic to my yoga studio, I was reminded of something that I can't afford to moderate: my courage. At one point, as I've shared, going to my PT's clinic ("my PT") for tune-ups was a challenge. I wanted to be "better," and I thought that meant "having no need for any medical intervention." As I've grown these past two years, becoming an athlete, a yogi, a 40-pounds-heavier, living, breathing woman, I've changed my mind. My PT is vital to my enjoyment of life, because she allows me to continue to be courageous. She'll be there if I fall (as she's demonstrated oh-so-many times before).
Read MoreI walked out the door of the clinic that day proud and nervous. Was I really better? She assured me that I was. My doctor and husband and family and girlfriends assured me that I was. So, I figured I’d take this “healthy” thing for a spin.
If health is a state of existing in perfect comfort and contentment, it was short lived.
Read MoreWhen I stopped seeing my PT regularly, I tried to avoid coming back in for visits. I wanted to feel like I was actually healthy, and not relying so heavily on her help. This sounds silly now, but at the time, I hadn’t gone more than a couple of weeks without PT for years. But after seeing my health through this goofy construct for a few months, I began to understand that a much better goal is a state of “supported independence.”
Read MoreOthers’ judgment and treatment of me transformed my own beliefs about the legitimacy of my illness. I unintentionally invalidated my own body’s experience of pain, and I’d allowed those who chastised me for “taking advantage” to usurp my right to be treated decently outside the confines of my own home. In letting people like this dictate how I would care for myself while enduring unspeakable pain, I somehow lost ownership of my experience.
Read MoreI opened the driver door and was confronted with a wave of judgment and anger. The man yelled at me: “can’t you see we are still getting into our car? You’re not even disabled! You shouldn’t even be parking there!” I flushed with embarrassment and became shaky. And for the first time in my life, I yelled at someone in public. “You have no idea what you’re talking about. You know nothing about me!”
Read MoreWhether the holiday itself is a “good pain day” or a “bad pain day,” it’s a “pain day.” (When you have persistent pain, every day is a pain day.) There’s anxiety leading up to that day, worrying about how you’ll feel, and there’s exhaustion after the holiday itself as you recover emotionally (if not physically too).
Read MoreMy illness and weekly out-of-state travel for care had worn me down. I looked like a ghost, spent most of my time in bed, missed classes frequently, and was probably starting or withdrawing from some new horrible medication. We realized that if we married, I would lose my insurance -- my only access to care. And to be frank, I was a wreck. We held hands, I cried, and we decided to indefinitely postpone our wedding. Notifying our family and friends was heart-wrenching.
Read MoreMy last post ended with my arrival in Chicago. After a two-day, cross-country drive from New Mexico, our UHaul pulled into town. We arrived in the midst of the 2014 Polar Vortex, the coldest winter that Chicago had seen in 30 years. My pain was so severe that I couldn’t wear pants or underwear, and the thick sheet of ice covering most of the city didn’t make it any easier to walk normally or navigate a wheelchair.
My husband and I unpacked our UHaul as the snow poured down, and then, surrounded by boxes, we sat on the floor of our apartment (above someone’s garage) and sipped hot chocolate. What had we done?
Read MoreI recently wrote a blog entry for my law firm, Jackson LLP, about insurance discrimination against women in pain or suffering from chronic conditions. It's so relevant to Inspire Santé's mission that we're also sharing it here.
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”Inspire Santé”, “Hope Dealer,” and “Patients are people.” are all trademarks of ours. They stem from our founder Erin Jackson’s personal retelling and writing of her experience with pelvic pain. Words matter, and these are hers and ours. Don’t steal; it’s bad karma, and we’re trying to do good. If you use them, attribute them.
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