I’ve had the same theme for years and frankly it’s growing old. I’m looking for something that better fits my personality and offers the functionality we are all looking for.
This is where your help is critical, I need feed back on what you would like to see, what widgets, functionality, content, you name it. I’m going for an all out explosion.
I’ve taken the Twitter feed off the page, I had it up there as a resource. Everyday I go and retweet post I feel you would be interested in seeing. Not many of you commented on its usefulness.
I want to give a special shout out to the 4,200+ Twitter followers, you have taught me so much, given me great feedback and support.
I don’t say it often enough but thank you to my WordPress followers. Thank you for sharing your stories, commenting and being great friends. I’ve come to know many of you throughout the years and I value our relationship.
Let’s hear it, the good, bad and ugly!
You’ll see me change themes several times until I can settle on “the one”.
By Abigail Chua, DO, and Katie M. Golden,PP (professional patient)
Headache Specialist Abigail Chua, DO, and Katie M. Golden—a self-proclaimed professional patient—candidly unravel best practices for creating a successful partnership.
First appointment jitters
Dr. Chua: Katie, what’s your biggest pet peeve when you see a health care professional for your headache disease?
Katie: I feel like I’m auditioning to gain a spot in their clinic. I prepare for three to 12 months. That’s a long time to get stuck in my head and think of all the possible outcomes. Then all of my hopes and dreams could go down in flames if we don’t vibe.
Dr. Chua: You make a good point. To a doctor, this visit is a normal part of their work day, but to you as a patient, it could be a significant life event that has caused excitement and maybe anxiety for months.
Learning moment: Health care providers should remain empathetic. And patients should remember that they are evaluating their doctor, too. Don’t think of it as an audition. Reframe it as an opportunity to find the headache specialist who best suits your needs.
Preparing for your appointment
Dr. Chua: Most headache specialists ask patients to fill out a questionnaire in advance of their appointment. While these seem tedious, they help focus on the specific details of your headache. Without it, your visit may not be what you’re expecting because it may limit what your doctor can safely prescribe for you. I often wonder why some patients become upset when they’re asked to fill these out.
Katie: Honestly, I’m exhausted just thinking about it. Brain fog makes completing a task in one sitting difficult. Then I think, will you even look at it? And what about medical records? No joke, I have a box filled with notes, diaries, pathology reports, and scans that weighs 40 pounds!
Learning moment: Remember that it’s about quality, not quantity. Don’t bring 40 pounds of your medical records, but do bring: Your completed questionnaire. (Any good headache specialist will review it.)
Recent imaging scans, like an MRI or CT scan. If possible, bring copies of the actual images as well as the written reports. List of current medications, including over-the-counter medications, that you take for all your medical conditions; not just headache. List of previously tried headache treatments and your reactions to them.
Mental health and migraine
Katie: Why do I have to see a psychiatrist? Migraine is a genetic, neurological disease that is not my fault, so being told I need to see a psychiatrist, psychologist, or therapist makes me think you don’t believe me.
Dr. Chua: Understand that a mental health referral does not mean “it is in your head.” Pain doesn’t just affect you physically; it causes feelings of anxiety, sadness, hopelessness. Some people develop healthy coping skills and have a solid support system, while others just aren’t equipped with the right tools.
Learning moment: A good treatment plan is a multidisciplinary approach that addresses all the ways that headache diseases and comorbidities are affecting a person. Alternative methods Dr. Chua: Many people use alternative treatments in addition to traditional medications. Katie, what do you use?
Katie: There has to be a balance of medications and “self-healing” practices often referred to as complementary and alternative medicine (CAM). For me, that may mean yoga, but for others it could be meditation, reiki, herbal supplements, essential oils, or acupuncture.
Dr. Chua: I have a certain set of criteria that I ask patients when they ask about alternative treatments. They should make sure that the treatment isn’t illegal, isn’t going to harm them, won’t put them into debt trying to get it, and makes at least some kind of medical or scientific sense. If these criteria are met, then I am usually open to them trying it.
Learning moment: There are many alternative treatments available to patients. However, natural does not mean safe, so tell your doctor everything you’re doing or taking.
Goals and expectations
Dr. Chua: There is currently no cure for migraine and headache diseases. The goal of headache medicine is not to “fix” your headaches. Instead, my goal is to help improve a patient’s quality of life by finding ways to manage their disease, so that despite their headache, they are able to live the life they want.
Katie: When my headache specialist told me that I was chronic and there isn’t a cure, it was a punch in the gut. I had to accept that migraine had taken up permanent residence in my body. My perspective changed and I stopped chasing a cure that doesn’t exist.
Learning moment: “No cure” doesn’t mean it’s hopeless. Many new treatments are in the pipeline. Find a headache specialist to help manage your disease, but keep your expectations realistic: Not everyone will become headache-free. •
Abigail Chua, DO, is a double board-certified neurologist andheadache specialist at the Hartford Healthcare Headache Center in Connecticut. She is also the program director of its Headache and Facial Pain Fellowship Program, as well a previous INvisible Project participant. Dr. Chua also has chronic migraine, giving her a unique perspective into the world of headache.
Katie M. Golden is the Migraine Advocacy Liaison for the U.S. Pain Foundation, contributing editor of the INvisible Project, and director of Patient Relations for CHAMP (Coalition For Headache And Migraine Patients). Writing and advocating have given back the power that chronic migraine had stolen from her.
I love Aromalief’s Calming Hemp Pain Cream so much I’ve become an Affiliate. When you make a purchase thru the link you will not be charged an additional amount and will help fund my coffee habit.
My affiliate link takes you straight to the Aromalief site.
I’m reviewing Aromalief Hemp Pain Relief, Hemp 1000MG as a member of Chronic Illness Bloggers http://chronicillnessbloggers.com and have not received payment for my review.
I was thrilled to find the product is cruelty-free, vegan, PETA approved, and in a relaxing Lavender scent. I have not tried Hemp cream products before because of the smell and was eager to see how well the cream worked.
Here’s some information about Aromalief
What about the safety of the product?
Aromalief is made in an FDA registered facility and each ingredient has a Safety Data Sheet and Certificate of Analysis. We buy only high-quality ingredients from reputable suppliers and do our own internal testing for everyone’s peace of mind.
How do you make sure Aromalief is Vegan and Cruelty-free?
Every ingredient that we source comes with a written letter from the ingredient manufacturer that the product does not contain any animal ingredients and that they do not test it on animals. The manufacturing line also has a strict vegan-only policy. Aromalief is proud to have PETA’s Vegan & Cruelty-free designation.
What type of pain is Aromalief good for?
Pains of the body and the soul. This includes muscle, joint, nerve, and chronic pains PLUS stress, anxiety, and sadness. Our ingredients are the best in the market to help relieve pain due to arthritis, back pain, herniated discs, carpal tunnel, tennis elbow, and more. If your type of pain isn’t listed here, we still encourage you to try it. If it doesn’t help you, then simply return it. Have a little faith and try Aromalief.
The cream has a subtle lavender and menthol scent, not overpowering. I have slightly sensitive skin and the cream didn’t cause any sensitivity.
It rubs in quickly, no greasy fingers on the keypad. It has a warming sensation that eases inflammation. I focused on three areas, the neuropathy in my feet, sore shoulder muscles, and arthritis in hands.
Right away I noticed a difference in my feet, they could touch each other without pain. It lasted long enough for me to go to sleep. My shoulders are always tense and I have a problem relaxing at night. I used the cream on my worst shoulder and it did warm up the muscles helping me to relax.
The thing I love the most about the cream is how well it worked on arthritis in my fingers, I also noticed neuropathy relief in hands. The fact that the cream dries enough to get right back on the computer is a huge bonus.
I have already bought two tubes to make part of my daily self-care. Aromalief is a great everyday hand cream too.
Between social media posts about spa days and advertising from the $450 billion wellness industry, it can be tempting to dismiss self-care as expensive gluttony. Yet when you have a chronic illness like migraine, self-care is a necessity rather than a treat. Instead of lavish pampering, self-care, when you’re sick, tends toward practical, routine necessity. (Though everyone could use an indulgence from time to time!)
If self-care isn’t getting massages and facials while lounging on the beach in Hawaii, then what is it? Self-care is the simple act of listening to and attending to your needs in a way that you find restorative. Even the smallest acts can be self-care. If you love turning down the sheets on a neatly made bed, then making your bed every day is a form of self-care. If you crave a particular brand of coffee and it’s in your budget, then making a cup for yourself each day also qualifies.
Self-care doesn’t have to cost any money and it doesn’t have to take much time. The amount of time you spend is up to you—it can be taking an extra two minutes to lie in bed after your alarm goes off to gear yourself up for the day, a 10-minute phone call to a friend, a daylong hike, or anything in-between.
If you’re new to self-care and eager to get started, it’s tempting to jump in and try a variety of approaches all at once. That’s a great way to get burned out on self-care and decide it’s more work than it’s worth! You also won’t know which practice is helping you most. Instead, try one small thing to start. Choose something that’s both meaningful to you and manageable given your time constraints.
Here are some questions to ask yourself to help you find a mode of self-care that will be most comforting for you:
What’s your favorite part of the day?Identify the things you already do often and love, then make them a regular part of your day. By creating a ritual around an activity, you can transform it from mundane to self-care. This can be as simple as changing into your favorite pajamas early each evening or listening to your favorite song while stuck in traffic.
What is something you get to do occasionally that makes you feel restored? If coloring makes you smile, you can carve out a few minutes every day to color. Or if being in nature is a necessity for you, see if there’s a spot in your yard or a nearby park that you can spend some time in regularly.
You may have things you love to do that don’t seem, at first, like they could become part of your everyday life. Those might just need a creative solution. For example, you may love dancing to live music, but avoid concerts because they are full of triggers. Can you get your fix by dancing in your living room?
What’s something you did as a kid that you’d love to do again?Climbing a tree, playing with Play-Doh, or riding a bike can all be forms of self-care. You might try one of those again and love it so much that you incorporate it into your life on a regular basis, or you might do it once and decide it’s not something you want to do again. Even trying novel activities is, in itself, a form of self-care. (And it’s good for your brain!)
What’s something you’ve always wanted to do but never tried? If you’ve wanted to try yoga, you can take a class or just learn a few stretches to do at home. (Check out YogaWithAdriene on YouTube.) You can pick up a new language in small increments through a free app like DuoLingo or Memrise, which stretches your brain and doesn’t take too much time each day. Maybe you dream of writing a book; while that kind of project could be more exhausting than it is relaxing, you can still flex your writing muscles by journaling for 10 minutes a day.
If you decide that trying something new is how you want to incorporate self-care, try to keep it simple to start—if getting yourself to weekly harp lessons and finding the time to practice is more stressful than it is relaxing, then it’s unlikely to feel like self-care.
What’s a migraine lifestyle change that you’d like to adopt?Self-care can also encompass all those things you know you should do to manage migraine, but may not prioritize, like getting enough sleep, eating healthy foods, and exercising. If you’re new to self-care, consider starting with a change that’s likely to have a positive impact on your life beyond migraine. You want self-care to be relaxing, not a chore that feels like drudgery in service of migraine.
Self-care is as individual as you are. It need not be elaborate or time-consuming, it just needs to be something that helps you find comfort and relaxation. And remember, if it’s not working, give something new a try!
Kerrie Smyres is a writer and patient advocate who has had chronic migraine for 30+ years. She is the founder of The Daily Headache and is a Migraine.com contributor. Kerrie is passionate about “translating” medical research into language patients can understand easily and writing candidly about life with chronic illness.
I hope you enjoyed the little bit of fun with last week’s music. This is a great new tune by Dolly Parton. Virtual hugs. Have a great weekend.
Melinda
Welcome back to Weekend Music Share; the place where everyone can share their favourite music.
Feel free to use the ‘Weekend Music Share‘ banner in your post, and don’t forget to use the hashtag #WeekendMusicShare on social media so other participants can find your post.
I’m reviewing Aromalief Hemp Pain Relief, Hemp 1000MG as a member of Chronic Illness Bloggers http://chronicillnessbloggers.com and have not received payment for my review.
I was thrilled to find the product is cruelty-free, vegan, PETA approved, and in a relaxing Lavender scent. I have not tried Hemp cream products before because of the smell and was eager to see how well the cream worked.
Here’s some information about Aromalief
What about the safety of the product?
Aromalief is made in an FDA registered facility and each ingredient has a Safety Data Sheet and Certificate of Analysis. We buy only high-quality ingredients from reputable suppliers and do our own internal testing for everyone’s peace of mind.
How do you make sure Aromalief is Vegan and Cruelty-free?
Every ingredient that we source comes with a written letter from the ingredient manufacturer that the product does not contain any animal ingredients and that they do not test it on animals. The manufacturing line also has a strict vegan-only policy. Aromalief is proud to have PETA’s Vegan & Cruelty-free designation.
What type of pain is Aromalief good for?
Pains of the body and the soul. This includes muscle, joint, nerve, and chronic pains PLUS stress, anxiety, and sadness. Our ingredients are the best in the market to help relieve pain due to arthritis, back pain, herniated discs, carpal tunnel, tennis elbow, and more. If your type of pain isn’t listed here, we still encourage you to try it. If it doesn’t help you, then simply return it. Have a little faith and try Aromalief.
The cream has a subtle lavender and menthol scent, not overpowering. I have slightly sensitive skin and the cream didn’t cause any sensitivity.
It rubs in quickly, no greasy fingers on the keypad. It has a warming sensation that eases inflammation. I focused on three areas, the neuropathy in my feet, sore shoulder muscles, and arthritis in hands.
Right away I noticed a difference in my feet, they could touch each other without pain. It lasted long enough for me to go to sleep. My shoulders are always tense and I have a problem relaxing at night. I used the cream on my worst shoulder and it did warm up the muscles helping me to relax.
The thing I love the most about the cream is how well it worked on arthritis in my fingers, I also noticed neuropathy relief in hands. The fact that the cream dries enough to get right back on the computer is a huge bonus.
I have already bought two tubes to make part of my daily self-care. Aromalief is a great everyday hand cream too.
The pain has moved to my lower body, it attacks every joint and muscle I have. For the past 10 days, my leg has caused a big problem, it’s hard to walk. Any pressure on my leg makes me scream out in pain.
I can’t stand up by myself unless there are objects strong enough to pull me up. My husband isn’t a little guy and it takes two or three tries because I start to cry out. I have no idea what is happening, this level of pain is new for me. It’s not so much the level but the time in constant pain.
I’ve been going to bed between 4:30-6:30 p.m. every night thinking resting is the only answer. So far that seems to be the case. I can now move my knee closer to a normal sitting position. Try getting on and off the toilet, it’s been a painful 10 days.
I’ve forced myself to bed in order to get better. I’m not looking for total pain relief, that’s not my goal. Right now I want to be able to get out of a chair by myself. The rest of my body feels the normal everyday dull pain, my shoulder still screams out at night. Pain meds, topical patches and ointments the doctor gave me on Friday have provided no relief.
I’m laying in bed with one leg balancing the computer, trying not to walk any more than I have to. It’s a beautiful day after the storms we had yesterday, I want to see what the damage to my flowers but it will wait.
I am feeling significantly better by resting but letting life pass me by is not my personality. I always try to bulldoze my way through any pain but I’ve never cried or had this level of pain. I remain optimistic this is not the new norm if there is a norm with Fibromyalgia.
I started a new book which helps me go to bed earlier and stay connected to the world. Tomorrow is a new day, a day with possibly less pain.
This post is part of TED’s “How to Be a Better Human” series, each of which contains a piece of helpful advice from people in the TED community; browse through all the posts here.
I caught up with a friend of mine a while ago. She’s smart, she’s brilliant, and she’s talented.
After we did the usual warm-up chitchat, she looked at me and said, “Michael, you’re a good guy. I need your advice.”
My advice monster was delighted.
She started telling me what was going on, and I started to pretend to listen because, quite frankly, my advice monster already knew exactly what I wanted to tell her.
Finally, she finished so I was able to share my brilliant advice — — and make no mistake it was brilliant. But my advice went nowhere; my advice monster had sabotaged the conversation.
All of you know your advice monster. Somebody starts telling you about something. Even though you don’t really know the situation or the people involved and you certainly don’t have the full context, after about 10 seconds your advice monster is like, “Oh, oh, oh, I’ve got something to say here.”
The problem isn’t with giving advice. Instead, the problem is when giving advice becomes our default response. There are three ways that advice giving goes bad.
The first issue with advice giving is that we’re often solving the wrong problem. We get seduced into thinking the first challenge that shows up is the real challenge — but it almost never is.
The second issue is that our advice is not nearly as good as we think it is. If you’re thinking to yourself, “No, no. My advice is magnificent,” I suggest you watch a video on cognitive bias. It will explain we think we’re amazing at things even though we aren’t.
The third issue with giving advice cuts a little deeper. If you have an advice monster — and if I can be clear, we all have an advice monster — holding the responsibility of having to have all the answers and save the person and save the day is exhausting, frustrating and overwhelming. And for the person who’s on the receiving end of your advice monster, they’re getting the message that they can’t figure this out by themselves, which cuts away at their sense of confidence and autonomy.
We’re constantly feeding our advice monsters, and they’re insatiable. As soon as somebody starts talking, your advice monster looms up and goes “Oh, I’m going to add some value to this conversation, yes I am!” You need to learn to tame your advice monster, and in order to tame it, you have to understand it.
As it turns out, your advice monster has three different personas.
I call the first persona “Tell It”. Tell It is the loudest of the three, it’s convinced you the only way that you can add value is to have all the answers. Because if you don’t have all the answers, then you fail.
The second persona is subtle; it’s called “Save It”. Save It has put its arm around you and said, “Your only job is to rescue everybody — don’t let anybody stumble, struggle or have a difficult time. If anybody struggles at all, you fail.” Parents might recognize that one.
The third of the personas — and the sneakiest of the three — is “Control It”. Control It has convinced you the only way you win is to maintain control at all times. If anybody else takes over control, even just a little bit, then you (and they) will definitely fail.
Now there’s something that connects all three of these personas. In that moment when your advice monster is speaking, it’s saying that you are better than the other person and that they’re not good enough. But it’s not only the other person that is diminished; you are, too. You’ve lost that connection to your humanity, to your empathy, to your compassion, and to your sense of vulnerability.
To tame your advice monster, what you want to do is replace your advice-giving habit with a new habit: Staying curious. It’s as simple — and as difficult — as that.
Questions are the kindling of curiosity. Let me share with you the three questions that I wish I’d asked my friend when she said she wanted my advice.
The first question is: “What is the real challenge here for you?” This recognizes that neither of you know what’s going on at the start of a conversation. It repositions you to help the other person find the really important issue, not provide them with a fast, wrong answer.
The second question is “What else?” This holds the insight that the first answer your friend will give you is never their only answer and it’s rarely their best answer. This will help you go deeper and further on any question you ask.
The third question is a difficult question, but it’s so powerful: “What do you want?” When a person can get clear on what they want, it becomes their foundation for action. When they know what they want, they get to step towards that with autonomy and confidence.
When you’re able to stay curious, you begin to empower people not by giving them the answer but by helping them find their own answer, and not by rescuing them but by helping them find their own path.
Michael Bungay Stanier is the founder of Box of Crayons, a learning and development company that helps organizations transform from advice-driven to curiosity-led. He is also the author of the bestselling book The Coaching Habit. Before founding Box of Crayons, Michael held senior positions in the corporate, consultancy and agency worlds. He has lived and worked in Australia, the UK, the US and Canada.
Google “migraine products” and more than 48 million search results come up. How do you even begin to weed through options to find something that will help you manage your symptoms? Below are several products that have been put to the test by the migraine and headache community, and come out on top.
Note: These products are being provided as additional tools for you to use as you fight to manage your headache symptoms. U.S. Pain Foundation does not specifically endorse any of these products.
Cryotherapy
Migraine Hat Co-developed by Lisa Jacobson, founder of The Daily Migraine, Migraine Hat is an ice/compression therapy hat made specifically for people who live with migraine and chronic migraine. The Migraine Hat includes two reusable Cryo-Gel Ice Packs that stay cold for four hours, and pulls over the eyes and ears to block out light and sound. The wrap-around design contours to the shape of your head and stays securely in place while allowing you to adjust to your comfort or to target pressure points: bit.ly/migrainehat
The Catalyst Cryohelmet is a tool designed to help alleviate migraine and headache pain and concussion symptoms, as well as promote sleep. The cool packs stay cold for at least 90 minutes when they are frozen solid. They remain flexible so they can be wrapped around the head and neck. The Cryohelmet features moisture-wicking fabric, an insulating neoprene shell that is latex-free, and drawstrings to adjust the fit: cryohelmet.com
Icekap Therapeutics The Icekap, developed by Andrea Jones, who lives with migraine, combines cryotherapy, heat, aromatherapy, and compression to help alleviate the pain, inflammation, pressure, and swelling caused by migraine. The essential oil component of the Icekap combines the calming properties of lavender with the cooling properties of peppermint. With the adjustable pressure band, users can target the compression of the cap to key areas (occipital, frontal, parietal, or temporal): icekap.ca
Precision-Tinted Eyewear
TheraSpecs TheraSpecs was developed by Hart Shafer, whose wife, Kerrie, lives with debilitating migraine. The precision-tinted glasses are designed to filter lights from fluorescent lights, computer screens, and bright sunshine that trigger migraine, headache, and eye strain. When worn regularly, the glasses can help reduce the frequency of attacks. The frames are ultra-lightweight and flexible so as to not add any extra pressure to already sensitive areas. Many styles offer wrap-around protection to block and filter light from the sides: theraspecs.com
Axon Optics Axon Optics provides therapeutic eyewear for migraine and light sensitivity. Founder Bradley Katz, MD, PhD, a neuro-ophthalmologist, studied the pain pathway associated with migraine and photophobia. Through his work, the company developed the SpectraShield FL-41 migraine glasses lens for indoor and outdoor sunglasses. FL-41 improves light sensitivity by blocking out blue and green wavelengths of light, which are thought to be a problem for patients with light sensitivity. Axon Optics also offers glasses for blepharospasm (BEB), as well as indoor sunglasses: axonoptics.com
Protection From Outside Triggers
WeatherX Earplugs WeatherX is a pressure-regulating device that provides a proactive way to manage weather-related migraine and headaches before they start. At the first sign of headache, you place the devices, one in each ear, for 2 to 4 hours or until symptoms have alleviated. WeatherX includes a ceramic inner filter that regulates air flow in and out of the ear canal, which helps mitigate shifts in weather pressure. It has four rings for a snug, comfortable fit and is made of soft, cleanable, hypoallergenic silicone. A free app can be set up to alert you when weather pressure shifts are happening near you, prompting you to proactively begin using the earplugs: weatherx.com
Aculief Aculief is a wearable acupressure device that uses your body’s own endorphins to help relieve headaches and migraine attacks naturally. It provides pressure to the LI4 acupressure point, which has been used for thousands of years to provide natural headache and tension relief as well as promote your body’s natural energy: aculief.com
Vogmasks Vogmasks are unique face masks designed to be reusable and fashionable. These masks are especially useful in blocking many external triggers that often exacerbate migraine symptoms. It provides protection from airborne particles such as dust, allergens, odors, scents, mold, and more: vogmask.com •
Jaime Sanders is the author of the award-winning blog The Migraine Diva. She is a member of CHAMP (Coalition For Headache And Migraine Patients), and the Headache and Migraine Policy Forum. Jaime works with the Society for Women’s Health Research Interdisciplinary Migraine Network and sits on the Patient Leadership Council with the National Headache Foundation.
lookingforthelight.blog 