All posts tagged: invisible disability

I am Not the Reliable One — Also, a Book Review: “Kicking Sick” by Amy Kurtz

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I am not the reliable one. I recently made friends with a guy who has stage 4 colon cancer. By chance, we were sitting next to each other while waiting for a flight back to Boston from Atlanta. The flight was delayed by two hours, and his soul spoke to mine. We became friends in less than 20 minutes. Just one of those things, I guess. When his phone rang, it said, “God’s gift to women, pick up!” It was his mom, an older lady with a glorious halo of gray hair. She was delightful. She knows my name, knows all about me now. His whole family knows who I am. He wants to talk more often than I talk to most people. More than I talk to my family, even. I’m not used to it. And the thing is, he might literally die before I get the chance to speak to him again. He slipped into a coma and came out of it while I was in a pain flare, and I had no …

Do We Lose Our Dreams with Chronic Illness?

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Today we have a guest contribution from the lovely Crys Baysa! *** Chronic illness is hard enough as it is. But even worse, the things we used to do, we can’t do anymore. Suddenly, hanging out with people is hard, doing your job is nearly impossible, and understanding the things you’re trying to study is downright frustrating. It is in times like these that it’s easy to wonder if we’re ever going to be better again. ‘Am I going to be able to play my beloved violin again? The pain is too much!’ ‘Will I ever be able to memorize those formulas again? I can’t remember things and I want this degree badly!’ It’s not just the physical limitations that become more and more. It’s the emotional limitations. What Dreams Really Are Dreams are not just desires for the future. They’re expressions of ourselves. It doesn’t matter if it’s something like science, speech, or even simply sculpting a statue. It’s very much a part of who we are, and it’s an emotional release. When you …

Reworking Your Home Life to Minimize Chronic Pain

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We have a lovely guest post from a new contributor, Jackie Waters, of Hyper-Tidy.com!  Living in constant pain can cause worry, stress, anxiety, and depression. You wonder if you’ll ever feel better or if you’ll keep feeling worse. It is possible to get your life back and get a handle on chronic pain. People who suffer from it can incorporate everyday, holistic changes to improve their quality of life and manage their pain. Lifestyle and Diet Mindfulness meditation is a way to effectively train your brain to turn down the volume on pain. According to The Huffington Post, “A typical meditation involves focusing on different parts of the body and simply observing with the mind’s eye what you find.” Doing this makes you aware of the connection between your mind and body; you observe painful sensations as they happen, and then let go of struggling with them. You may doubt the impact mindfulness meditation can have on chronic pain, but it has been shown to reduce it by 57 percent, and skillful meditators can reduce it by …

Everybody Has Something Wrong With Them

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Everybody has something wrong with them. I don’t care who you are or how many marathons you’ve run or how loud you are about it, but literally everybody on this planet, no matter how young or old, has something inside that is actively working against them. That young boy bicycling to school has Type I diabetes. The teacher shepherding students into the classroom has arthritis. The school bus driver has sciatica that runs down her right leg. The mailman has a limp because his hip gave out after twenty years of walking his route. The old woman shuffling down the sidewalk has cataracts, rheumatoid arthritis, and skin cancer from the days of tanning with baby oil. If something isn’t wrong with us when we’re born, something will go wrong. As soon as we are born we start to die, and little chips of us are broken away year after year by means of illnesses and sprains and accidents and cancers. Some people don’t even know anything is wrong yet. Two guys see their coworker struggling …

ChronicBabe: 5 Reasons Why Leaving My Job and Working From Home Was The Best Decision I Ever Made

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Check out my guest post for Jenni Grover Prokopy’s site, ChronicBabe! Hi! My name is Jen, and I’m a 29-year-old attorney, editor, writer, and patient advocate. I have spinal fractures from two car accidents that required two cervical fusions. The jury’s out on whether I’ll need more surgery. I worked in an office for three and a half years after law school. At that point I was dealing with the fallout from my first car accident, which happened in 2004 and decimated my thoracic spine. Law school happened, and then my job, and then… another accident. That second accident became a barrier to a normal life. Eventually I decided to leave my job and work from home. Here are the reasons why it was the best decision I ever made. My health comes first now. I was living the dream: I had a legal job that started at 8 am, ended around 6 pm, had great coworkers, and allowed for a life. My bosses were cool. During my second year, however, I had another car accident. …

Why Do I Keep Waking Up at 4:30 AM Every Day?

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Sleep has always been a passion of mine. I’m always a bit grumpy when I have to leave my pile of blankets and start the day. It’s the most comfortable, comforting place I know. Like comedian Jim Gaffigan said to his bed, “You were wonderful last night… I didn’t want it to end.” My high school friends knew not to call my parents’ house after 9 pm because we would be asleep. The weirdest part is that as children, my siblings and I would put ourselves to bed at a reasonable hour. My parents would have friends over, and instead of trying to stay up with the adults, we’d wander downstairs in our pajamas to bid everyone goodnight. My brother and sister have become night owls, but I’ve always needed more time in bed because of my chronic injuries. As such, I was never an early bird or a night owl. I guess I’m sort of a late-morning angry bird. Photo credit: challiyan via Visualhunt.com / CC BY-SA So imagine my surprise this week when I started waking …

Huffington Post: How Long Have You Been Fighting the Chronic Pain System?

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Check out my first article as a contributor for the Huffington Post! How long have you been in the system? The medical system, I mean. I’m talking about the chronic pain and illness patients ― like me ― who make a pilgrimage to the doctor’s office month after month, year after year, until the pain stops (or we die). PHOTO VIA VISUALHUNT   You know someone like this, since one in three people suffers from chronic pain in the United States. That’s right – between you, Mom, and Dad, statistically one of you is dealing with a physical or mental ailment that ranges from mild to debilitating, and has lasted longer than three months. That’s pretty loose criteria. I sailed by that marker about 12 years ago. When I was 17 our car was rear-ended by a man driving 65 miles per hour while we were stopped because of traffic. My aunt was the front passenger and my mother was in the driver’s seat. I could see my mom’s eyes widening in the rear-view mirror. I had …

Does Chronic Pain Need a Mascot? (My Answer? Yes.)

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Readers, meet Rufus. I feel that a mascot is needed in my life. You know, a cheerleader who understands how hard life can be when feeling physically terrible and having your attention constantly split in half. Chronic pain is vague by definition; it can be widespread or localized in the body, stabbing or dull, intense or flat. We only have the unifying term of “spoonie,” which is derived from the Spoon Theory. While that does a great job of describing why we power down without warning (because we’ve “run out of spoons,” each spoon representing a daily activity), it doesn’t give me a good visual besides — well, cutlery. I wanted to show the chronic pain and illness experience, but I needed something that would also put a smile on my face. Like, “Yeah, chronic pain is exhausting and endless. Let me explain my day to you. Let me help you understand. I’ll try to make you laugh while I talk about it, because I know how depressing this topic is.”   I couldn’t design that …

The Pulse: Are Good Care and Compassion Lost in Efforts to Curb Opioid Prescriptions?

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The title asks a great question. The Pulse of WHYY Radio asked that question of me in a podcast, and here is what I said! They also included the counter-perspective of a physician and health consultant, which I think was a great way to balance the conversation. Go listen to the melodious sound of my voice! It’ll air live next Friday at 9 am (I think), so if you’re in the Philadelphia/Delaware/Southern Jersey area, turn on that radio and tune in! Link again to the podcast: click here!

The Quell Pain Relief Device: One Year Later

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One year ago today, a beautiful relationship between man and machine began. I shall weave my disclaimer into the story: This day last year, FedEx delivered the Quell pain relief device that I’d bought during their Indiegogo campaign. I hadn’t been contacted by the company to try it, and I paid for it with money that I earned. I keep several alerts on my news feeds, and I found it in a story about new medical devices that contained this slim, mostly unobtrusive wearable. It sounded too good to be true — it could produce endogenous opioids within my body, like natural versions of the medications I fought so hard each month to receive? All-over pain relief by wearing an electrode on the calf? I didn’t care if it sounded too good to be true. I had to try it. And I have tried it for approximately 350 out of the past 365 days. About one week of that was when I transitioned to a work-from-home situation. My routine was so interrupted that I simply …