Donna Kobayashi

@mybeautifulmigraine | contributor
Married to my BFF and “rock,” mom to 4 amazing blessings, mid-40’s. RN – the one you want your family member to have. I love and miss Nursing – no longer able to practice due to health. My home biz and advocacy for chronic illness keeps Nursing alive in my life. Migraineur all my life but moved from episodic to chronic a decade ago. I have a collection of dxs: Depression, Anxiety, Chronic Migraine, Rheumatoid Arthritis, Sacroiliac Joint Dysfunction. I am grateful to The Mighty, as well as other social media support. The feeling of Despair I struggled when I thought I was alone was crushing. Thank you for being there for me, Mighty. I am here for you!
Community Voices

I'm an RN no longer able to practice in a clinical environment. Are there remote positions available for phone triage or patient case management?

3 people are talking about this
Community Voices

I'm an RN no longer able to practice in a clinical environment. Are there remote positions available for phone triage or patient case management?

3 people are talking about this

Migraines, Arthritis: When Chronic Illness Is Your Full-Time Job

My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help. I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-OK as I pretend to be “normal.” I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be normal. I dream of waking up one day – and all of this struggling will just *poof* be over. If you’ve ever experienced pain so severe and for so long that you’ve prayed you’d die, you know what I’m talking about. It’s been a 10-year string for me. And despite how I focus all my energy on being well, the physical abuse and mental stress I inflict on my body while trying to “appear well” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” with my job! Normals often don’t know what to do with chronics. They don’t get it – unless they get it. We may appear to be lazy, whiny, unreliable, boring, insincere, anxious complainers. I’ll freely admit my former self didn’t understand. There’s no kicking chronic migraine, rheumatoid arthritis, etc. and booting them our of your life. There’s no beating them. No remission. No cure. So…we may come across as 1) boring, 2) annoying and 3) weird. I think the only way to explain chronic illness to an average person is in analogies… Imagine having the flu every day of your life. Go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s all flu. Then imagine having to climb Mt. Everest with that flu. Every day. Mt. Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to a doctor appointment (where they give you the news that they can manage your illness, but there is no cure. And the meds they want you to take may bring on side effects that are worse than the illnesses themselves). It’s like I’m half-alive, living a half-life. I feel like a lump. A burden. A shadow of my former self, a shadow of a mother, a shadow of a wife, a shadow of a friend. Yeah, staying home is great fun…staying home, being disabled – it’s the “job” I’ve always dreamed of having. I’m good at my job. I’m great at my job. But I hate my job. I hate how it affects our family. How it takes things from us every day with no shame or remorse. Sometimes…sometimes, I am so done. I want to quit my job. We want to hear your story. Become a Mighty contributor here.

3 Comments People Often Make About My Migraines

How do you talk to someone with a chronic illness, like chronic migraines? What do you say? First and foremost, I don’t always have to talk about it. While it’s a part of me, it’s not all of me, by any means. Sure, I’m practically a freaking expert by default on the disorder, but I am so much more. I love having fun with friends, talking about our mom jobs and children and my passion for my at-home business. I also love empowering women, traveling, learning new things, current events, movies, home projects, family and so much more. Sometimes I feel down, discouraged about the never-ending nature of my illness. Sometimes I want to use my twisted humor to deal with it. And it’s OK to laugh about it. I do a lot of eye rolling, sarcasm and laughing. It is so therapeutic. One comment I get a lot from others is, “I get migraines sometimes but they’re nothing as bad as yours.” This makes me sad; don’t ever play down your migraine disorder just because you’re episodic and not chronic. If you’re a migraineur, I view you as a fellow warrior, whether you have one migraine every three months or you experience 15 or more a month. I’m no different from you – we both have a neurological disorder that has no cure. I’d love to talk with you about your treatment…Maybe there are some options available you or I haven’t heard of? And I’d be interested hearing how you cope. I’d to share with you, fellow warrior. Don’t downplay your migraines! Even one migraine is one too many for any human to experience. We deserve more research, we need more treatments, we need better medical care, we need less social and medical stigma. We need more understanding, we need more discussion and awareness, and we need a cure. Another comment I get from well-meaning peeps, “Are you still getting those migraines? I thought you were getting the botox?” Or, “I saw you this morning and you looked fine!” Yeah. These are tough. First, as of 2017, there is no cure for migraine disorder. There are three types of treatments to help: 1. Preventative 2. Abortive 3. Rescue treatments For chronic migraineurs, usually a combination of all three treatments are required to manage your neurological disorder. So first and foremost, the word “chronic” means simply – it doesn’t go away, it doesn’t end or stop, but it can be managed. So, yes, I get the Botox and yes, it helps. And yes, as disappointing as the reality is, I still get the migraines. To the second question, darn this can be a tough one to explain. I can look “fine” even when I’m migraining. I am so used to pretending and pushing through the symptoms just to get through the day. It would be embarrassing to me to “look how I feel.” Although, there’s a good chance that when you saw me and I looked fine, I actually might have been fine. The devious part about chronic migraines is they are sneaky and can be creepy or instantaneous. The nature of the disorder makes my nervous system as sensitive as a toddler with PMS. I can wake up “fine,” run a couple of errands and then – bam! A change in temperature, a startling noise, a fluctuating hormone, or basically anything in regular life can trigger a migraine. And then I’m canceling on you because my little migraine monster is demanding my full attention. They are predictably unpredictable and sly ninjas just waiting to ambush. It’s frustrating making plans with me? You betcha. While I am reliable, my health is not. And it never fails to disappoint me. I feel awful letting people down and I feel awful missing out. I do hope some of my lengthy essay can end the awkwardness around migraines. Wanna chat about it? I’m always up for discussion. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: CamiloTorres

Krissy Purcell

Letter to People Who Think Chronic Pain Isn't That Bad

I have a friend. A poisonous friend. When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches. She is cruel. She cares little for family occasions, first dates, social events and the like. She perhaps forces me to stay home, or she makes sure she is right there with me, ensuring I don’t forget her presence for a moment. She’s been a silent witness to some of the most remarkable and agonizing moments of my life. She’s always here. Her name is Pain. There are many who live with her, just like me. We do our best to keep on living despite her glowering presence. It doesn’t matter how long you live with her, you never become immune to her. Yes, we learn to continue our lives, even the mundane daily stuff that keeps it “normal.” Yes, we smile, laugh and make jokes. We make love, shop and eat, despite the anger it causes her to display, and we relish and appreciate anew the simple joys that take much to remove or lessen. Cuddling my grandbaby. Looking into her eyes. Laughing with my children and hearing them say, “I love you Mama.” They all make life with her worth living. But let me tell you a secret. It hurts! It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts. See, constant and chronic pain isn’t something you magically get “immune” to. If I kicked you in the shins wearing my boots every 10 minutes, you would not be desensitized after the hundredth kick, would you? You don’t get magically used to pain. Let me tell you another secret. I don’t have a “low pain threshold,” and neither do the huge majority of my pain family — those others I know and love who suffer daily alongside us all.  On the contrary, whenever it’s possible to physically do so, we do things like go to markets, gatherings, the park and shopping with our babies. Yes, like “normal” people! But you see, we often do it in such pain that if anyone else experienced it, they would demand pain relief at the closest emergency room. Normally, pain is your body’s sharp and intense warning that something is amiss. You are meant to feel it, and the amount of pain allows you to determine how serious the injury may be. With chronic pain, the pain is no different. It screams at you to notice it. It rends your heart and mind with its incessant demands to be noticed and treated. However, no matter what the pain relief is, unless there is an urgent or acute injury or illness on top of that pain, then the aim of the medical profession is to relieve it to a degree. The aim is not to take away pain. It is not necessarily realistic to do so long-term unless we are palliative. So that’s the next secret I have for you. Despite often hefty pain-relieving medications, pain is diminished to the point that we can push through it and attempt normal function, but she is still right there Please, the next time you think to yourself about someone with chronic pain, that it can’t be “that bad,” that we are being hypochondriacs or that we are just being a baby or just trying to get out of some activity, give yourself a forehead slap! Here’s another secret. It’s rare for someone who lives with pain to actually tell you that she hurts so badly she fights the urge to bash her head against a wall, or scream, or just cry about the unbearable unfairness of it all. While you look on, we  protect you from our pain. “Nah , it’s fine, just a twinge.” “It’s OK, I’m just a bit sore.” Or the automatic response, “Fine thanks, how are you?” We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, impatience, and out and out rudeness. At first it’s all sympathy. But I don’t want that! Empathy! That’s what I need. Not the (not-very-discreetly) rolled eyes and mutterings. This is why I protect you. Because to one who hasn’t experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. It’s humiliating to justify my pain, so I seldom choose to do so. The best thing that you can do for a friend or loved one who also lives with pain is to realize that pain hurts! If we are exhausted, sore or unwilling to do some activity, it’s because we hurt, badly. Even at the moment that you helpfully attempt to change the subject, that hurts, too. When you chatter brightly about your toe or that sore back you had once, you diminish our reality and you diminish your capacity to hold anything nearing empathy for us. Instead, ask what tangible thing you can do to help. Or say truthfully, “I don’t know how that must feel, but I’m here if you need me. I believe you. I love you.” Remember that I invariably almost over-respect any pain that you have. I will often fuss relentlessly if you are even mildly sick or hurt, because your pain is one that I feel I can help, unlike mine. Most important, here is the final secret I will share with you. Pain moved in uninvited. We didn’t ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please don’t punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our “just a bit sore” and “It’s OK.” That means more than anything. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. *Sign up for our Chronic Illness Newsletter*