Annette Leonard

@chronicwellness | contributor
Super Contributor
In my Chronic Wellness YouTube channel and podcast I use a heart-centered approach to honestly explore topics related to chronic illness, isolation, relationships, self-care, and quality of life. To learn more about me, find links to my podcast, my socials, or read my blog, visit my website www.annetteleonard.com #myalgic encephalomyletis #fibromyalgia #Sjogrens #antisynthetase syndrome #polymyositis #polyarthritis #interstitial lung disease #migraine #rare disease #chronic meningitis #chronic pain #clotting disorder #lupus anticoagulant
Megan Glosson

7 Tips for Parents Who Live With Migraine

Being a parent is not always easy, especially if you live with a condition like migraine. At times, it almost feels like the two don’t mix, and I feel like I’m neglecting my kids with every migraine attack. However, I have developed several “hacks” to help make my life as a parent with migraine a little better, including these seven suggestions. 1. Explain Migraine to Your Children Kids are naturally curious, and they also work best when they at least have a basic understanding of what’s going on. For this reason, I highly recommend explaining your condition to your child in whatever terms seem the most age appropriate. Although it’s hard to be honest and vulnerable with our children about “adult” topics sometimes, I personally feel like explaining migraine to my children has helped our family immensely. Not only do they now understand what it’s like for me day in and day out, but they know what to do if I am dealing with an exceptionally difficult attack or nursing a migraine hangover. 2. Keep Your Migraine Toolkit Stocked Trying to build furniture without the right tools is frustrating at best, and the same rules apply to life with migraine. Therefore, all of the must-have items that help you manage symptoms must be stocked and easily accessible so you’re ready to crack down on your migraine whenever it decides to make a guest appearance. For me, this means having multiple ice packs in the freezer, placing all my medications in an easy-to-reach location, and keeping bottled water on hand. For you, this may look a little different, and that’s OK. What’s important is you have what you need ready to go so you can manage your symptoms and your children without missing a beat. 3. Keep Easy-Prep Meals on Hand In my opinion, there’s nothing worse than trying to cook dinner for a bunch of starving children while your head is pounding. The sounds and smells of the kitchen alone can make any phase of migraine worse, especially an attack. Then add hungry, whiny children on top of that, and it’s a real recipe for disaster. For this reason, I find it helpful to keep easy-prep meals on hand. Some of our favorites include frozen pizza, baked potatoes, canned soup and grilled cheese, and other frozen meals. 4. Take Advantage of Services That Work for You Sometimes, living with migraine makes it difficult to do everyday things that most people take for granted. In fact, there are weeks when trying to keep the house clean and grocery shopping feels impossible. If you’re a parent, you can’t just skip these essential parts of everyday life… but you can take advantage of services that do this work for you. This could include maid services or grocery delivery. 5. Teach Older Kids How to Help I don’t know if this is the case for all parents, but personally, I have a hard time letting go of responsibilities and letting the rest of my family pitch in to help. However, my children are definitely old enough and capable of helping, so I’ve started teaching them how to do some basic chores and other things so they can help out when I am having a bad migraine day. As your child grows older, you can start teaching them basic chores and cooking skills so they can pitch in and help from time to time. In addition to making your life easier, it also helps your child develop essential life skills and gives them a confidence boost when they know they’re making a difference in your life. 6. Make Meaningful Moments Whenever You Can Unfortunately, migraine has ruined more than a few days of my life and interfered with what were supposed to be special moments for myself and my children. However, I realize I have zero control over when my migraine attacks decide to make an appearance, and I’ve learned how to make meaningful moments with my kids any way that I can. As my kids get older, I’ve realized that it’s not grand gestures or extravagant events that make an impression on them — it’s simple moments where I allow myself to be present with them as we make meaningful memories together. So, as much as you can, look for ways to make meaningful moments out of each day, even if it’s just you lying on the couch cuddled up with the kids while they enjoy a movie. 7. Remember, Migraine Doesn’t Make You a Bad Parent While this isn’t necessarily a “tip” or “hack,” it’s a reminder I think we all need from time to time. Regardless of what type of migraine you live with or how your symptoms impact your day-to-day life, you are still an incredible parent. Your children love you exactly the way you are, and I know you do everything you can to give them the best possible life.

Community Voices

I'm somewhat new here!

Hi, I'm Zarkena and I joined The Mighty because I wanted to break free of the isolation of chronic mental and physical illness. Find a place where not only can I share my story, but perhaps even find solidarity in other's. I hope to find and share tips and skills for new ways to cope. Feel empowered and find a stronger voice to advocate for myself.

I joined The Mighty because we *are* mighty and there is strength in numbers!

#MightyTogether #ChronicIllness #Fibromyalgia #Migraine #Depression #GeneralizedAnxietyDisorder

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Community Voices

What’s your #1 tip for traveling with a health condition?

<p>What’s your <a class="tm-topic-link ugc-topic" title="1" href="/topic/1/" data-id="5c7ab8af97ada900da263021" data-name="1" aria-label="hashtag 1">#1</a>  tip for traveling with a health condition?</p>
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Finding a Supportive Doctor for Fibromyalgia Diagnosis and Treatment

Fibromyalgia – misdiagnosed, misunderstood, often dismissed fibromyalgia. Coming out of a long bout of mono, I wasn’t getting better. Actually, I was getting worse. However, the infectious disease specialist proved through my blood markers that the disease was no longer active, so by all the ways doctors were measuring, I was better. The thing is, I wasn’t. I had widespread pain. There were days when I woke up and my whole body felt like a bruise. It was painful to set my feet against the floor, painful to put weight on them, when the muscles in my calves activated, it felt like I’d run stairs in heels, and every other muscle group had a similar complaint. My skin was tender to the slightest touch. The crushing weight of the fatigue felt as though I’d been submerged in water for 30 years and was now trying to walk on land for the first time and gravity had some sort of new, targeted pull it was using specifically on me. I couldn’t stand up for the length of time it took to brush my teeth. I can remember sitting on the toilet and using the toilet paper roll like a pillow while I went about my business. During this time, I applied for long-term disability (LTD) from my work. I couldn’t get out the door in the morning, much less manage my duties for 8-10 hours of thinking, walking, communicating, driving, and using the computer. My doctor told me she thought I had fibromyalgia. However, the LTD paperwork required that any fibromyalgia diagnosis must come from a rheumatologist. Here was the catch, without an autoimmune condition (or positive ANA bloodwork) no rheumatologist would see me or let me set up an appointment. I widened the search. I found a rheumatologist two hours away who would let me have an intake appointment. My hope was to take my file and get a diagnosis from her. My partner drove us up that morning. I went with guarded hopes, bringing not only my LTD questionnaire but also my questions for the doctor about my experience, what to expect, treatment options, etc. While she never completed an exam or asked me a single question, the doctor proceeded to berate me. She told me I was “lazy,” and needed to “get back to work.” She most definitely was not giving me a diagnosis or helping me complete my LTD paperwork. I left the appointment feeling diminished, belittled, and uncertain of where to go next. She wasn’t the last of the awful doctor experiences I had, but she was one of the worst. Thankfully, I have a good deal of privilege (whiteness, education, access, a supportive spouse, etc.) and I persisted. Eventually, my search led me to a doctor that anyone who has fibro should know about. Her name is Ginevra Liptan and she, herself, has fibromyalgia. She developed it while in medical school. She knows firsthand the ways people with this disease are marginalized, overlooked, and dismissed. In an effort to find answers for herself, she has become a powerful resource for others with fibromyalgia and encourages multifaceted, holistic treatment. I’m incredibly lucky because Dr. Liptan practices just a couple of hours away from me so (thanks, again, to my able-bodied partner’s willingness to take me) I was able to have several appointments with her. She spent time listening to me and asking questions about my social history, not just my symptoms. She asked about whether I practiced mindfulness, the health of my diet, and the quality of my relationships. She did the standard touch tests, but she also talked to me about sleep hygiene and daily activities. From that first rheumatologist to Dr. Liptan was the difference between feeling all alone in chronic pain and illness and feeling like I had someone in my corner – leaving with resources and a way to get some traction on this illness that had left me hopeless and unsure of where to start. That was 10 years ago. I still have fibromyalgia. There are still times when I feel like I did in that second paragraph. But I don’t feel that way all day, every day. Writing that last sentence feels like a miracle. There were times that I didn’t know that relief of some symptoms, even some of the time, was possible. It is. Positive change is slow, while negative change (flares) come on quickly. Disease management takes attention to self-care and daily habits: everything from what I eat and whether I stretch or exercise, to the quality of my thoughts and how I spend my energy. Looking back now I can see that I’ve come this far because I have a fundamental belief that 1) I’m worth it, 2) better practitioners are out there, and 3) no one will advocate better for me than me. When our bodies are worn out, exhausted, and in pain all the time, it is so hard to do our best thinking. When others (especially doctors) doubt us, it can be particularly demoralizing and difficult to stay steady and keep our spirits and determination up in the face of that afront. However, there’s nothing more important than getting the care you need. In the words of Robert Frost, “the only way out is through.” So, take breaks, call a friend, get support, punch a pillow in frustration, get some therapy, do whatever you need to patch yourself up and get back on the path. You’re worth it. While I fully believe that I am not my diagnosis, there is power in knowing our diagnosis so we can start getting the care and treatment we need.

Living Fully, Yet Within My Limits, With Chronic Illness

A few weeks ago I had the tremendous pleasure of getting out of town for the weekend. My wife and I own a tiny motorhome and because she is able-bodied and willing to do so much of the (literal) heavy-lifting, hauling, and driving, that it takes to get us out of the house and set up, we are able to go to the coast and have a change scenery. It is such a lucky and beautiful gift. We have friends who joined us at the state campground, and for two days we enjoyed their company, had leisurely days, saw the ocean, and let our pups enjoy some time playing together, too. Living with multiple chronic illnesses including myalgic encephalomyelitis, fibromyalgia, pulmonary fibrosis, chronic migraine, and polyarthritis, (among others), I have learned a lot over the years about how to pace myself. I know, for example, that I need to rest up for trips like this, I need to attend to my needs during the trip (advocate for things like breaks, naps, changing plans mid-course, etc), and the toll of a weekend trip can take days, sometimes weeks, to recover from. These are the costs. Several years ago, I was on the lung transplant list. When my lung function stabilized enough for me to get off the transplant list, a) we bought the motorhome, and b) I decided that if I wasn’t “busy dying,” I had better get busy living! To me, this philosophy and approach mean I intend to live my days to the maximum. As I’m able, I intend to assess my capabilities each morning, afternoon, and evening and live up to whatever potential I am up for. However, as some of you know and many of you can guess – this is an imperfect system. I am not always skilled at knowing what I’m capable of. Cut back to that trip two weeks ago. Although I am quite limited in my function, I have been training for the last two years by doing pulmonary rehab, riding a stationary bike, and taking the slowest of strolls in my neighborhood. I am now able, on a good day, at a snail’s pace, to walk two miles. (I used to climb mountains and I am so damn proud of these two miles — they may as well be Everest.) Before our trip, I had looked up some trails and found that there was a one-mile hike not far from our campsite. It was a loop (handy) at sea level (critical for my lungs) and had almost no elevation gain (also critical). My wife got out in her kayak and our friends decided to go for a walk with me. They were prepared to walk at my pace, so off we went. At some point on the walk, I don’t know if we were halfway or two-thirds of the way through, something disastrous happened, but I didn’t recognize it for the disaster it was at the time. The terrain changed. The ground shifted from being hard, packed, easy-to-walk-on solid ground, to sand. I don’t mean the tide just went out, relatively hard wet sand, I mean loose, shifting, sink into it, dune sand. Nope. Just no. I should have looked ahead, seen that there were more than 20 feet of it, and said, “Sorry, I need to turn back.” I could have said, “Dang, I didn’t know the trail turned to sand. That’s too bad but I can’t manage that.” I could have said any number of things and my friends would have willingly accommodated me. However, I didn’t. I trudged. I slogged. I panted. I stopped – again, and again, and again – probably every 15 feet. But I pressed on as though I was storing up points or crowns in heaven, and I finished. It took everything I had (and more) to make it back to the trailhead and that night I woke up in searing pain. My hip (in particular) but my legs, in general, were on fire. I could not get back to sleep. No amount of my breakthrough meds even touched the pain. We went home the following day and I can hardly remember leaving. I didn’t help, I barely moved, I was of no use because I sent my body into a flare. I remember rocking, I remember crying. That night my hip and joint pain was an eight on the pain scale. There was no sleep for me and then the cycle of pain>sleeplessness>worse pain>inability to sleep was locked in. On our second day at home, my wife called our family doctor who came and gave me an injection which allowed me to get the first rest I’d had since doing myself in. I didn’t even get out of bed for another four days. It was another week or more before there was some normalcy and routine to my days again. It is familiar, in these times, to turn on myself and start in with things like, “Why didn’t you?” or “You should have just…” I’m working to trade in the habit of self-criticism for a habit of self-compassion. It would also be easy to take this failed attempt at stretching myself and just shrink – not try to take a walk the next time I could. I’m not interested in that. I’m not interested in knowing how small my life can be – I’ve already tasted that menu and I’m not interested in eating there. I once told my therapist that I felt as though I was a piece of paper that had been folded in half over and over again until it was getting too hard to fold down any smaller. It’s so easy when I miscalculate my limit and overshoot to believe that I need to shrink. That isn’t the truth. The truth is I need to recover and recalibrate. Yes, my life has limits (in truth, everyone’s does, we are just forced to reckon with those limits in more obvious ways). Those limits are variable and change from moment to moment. I am interested in figuring out where my limits are and living right up to them. I want to maximize what I’m doing each day and live the biggest life I can. I know this isn’t a simple task, but I’m worth it. It means that I get it wrong sometimes and I pay dearly. But I can’t think of any reason I’d rather get it wrong. I’d pay all over again to see that heron majestically fly out of the lily pad studded pond up into the sand of madrones before I’d chose to sit on the couch all weekend. So, I guess that’s the messy truth, in my world, in many of our worlds. The cost of miscalculation is high, but what price am I willing to pay and for what things? Once I know those answers, I can start proceeding in the direction of the life I meant to be living – with all its concessions, accommodations and modifications. Life doesn’t look much like what I expected it would look like, at this point. And yet, I am worth it. I am worth trying for, I am worth making mistakes for, I am worth going back to the drawing board scrapping my previous plan and beginning again for, I am worth recovering from flares and injury for, I am worth fighting for and reclaiming whatever bits of joy and beauty I can excavate from the rubble of this tired, pain-riddled, hard-working body of mine. And so are you.

Maya Lorde

Celebrating My Birthday as a Suicide Attempt Survivor

I always have a birthday party (except during a pandemic of course). No one throws it for me. I do all the planning and even bake my favorite cake (carrot cake). I invite all my friends, there are many I am gifted to say, and I select a restaurant (I keep an eye out all year long for the perfect spot) and we all gather. I go around and take pictures of everyone with me so I can remember this time together and I can have pictures to look back on. I introduce everyone and talk about how we know each other. My friends are not friends, but they share one thing in common. They all love me. The reason I gather with my friends is to celebrate that I have made it one more year. I am chronically suicidal and the fact that I made it to another year is a true testament to three things. One, my faith in God to give me the strength I need to choose life. Two, my friends and family who support me when I am on the edge and believe that I am not worthy of love. And three, my will to make it one more day to be here for my daughters. So, I celebrate I made it one more year and it gives me hope that I can do it again. I attempted suicide in ninth grade and have struggled ever since to have the will to live. So, when my birthday comes along, I must celebrate. This was not how I viewed my birthday in the past. I saw it as another year of torture. Another year that I am ready to give it all up to end the relentless pain I was experiencing and felt I was causing those around me. I thought, “Why live and why celebrate a life full of suffering?” I saw my friends getting on with their lives and I was stuck in a depressed hell not sure how to release myself. The good news is no one else gave up on me. My treatment team held out hope. My friends included me even when I did not want to be included (so ashamed of my sadness I just wanted to hide). They help me learn to appreciate the coming year and a chance to renew and find strength in making it one more time around the sun. I owe my treatment team and friends a debt of gratitude. They stayed strong under relentless pressure from me to give up. They whispered in my ear that I was worthy of joy and love. That no matter how hard I pushed back they would never falter. You too can reclaim your birthday. You can celebrate you for making it one more year. Even if you have lost all your friends due to chronic or mental illness. You can buy a cupcake, light a candle, and make a wish for one more year. I know you are strong enough to withstand the tide of messages of loss and grief. You have this. If I can do it, you can do it, too. I wish you a Mighty Happy Birthday!

Finding a Supportive Doctor for Fibromyalgia Diagnosis and Treatment

Fibromyalgia – misdiagnosed, misunderstood, often dismissed fibromyalgia. Coming out of a long bout of mono, I wasn’t getting better. Actually, I was getting worse. However, the infectious disease specialist proved through my blood markers that the disease was no longer active, so by all the ways doctors were measuring, I was better. The thing is, I wasn’t. I had widespread pain. There were days when I woke up and my whole body felt like a bruise. It was painful to set my feet against the floor, painful to put weight on them, when the muscles in my calves activated, it felt like I’d run stairs in heels, and every other muscle group had a similar complaint. My skin was tender to the slightest touch. The crushing weight of the fatigue felt as though I’d been submerged in water for 30 years and was now trying to walk on land for the first time and gravity had some sort of new, targeted pull it was using specifically on me. I couldn’t stand up for the length of time it took to brush my teeth. I can remember sitting on the toilet and using the toilet paper roll like a pillow while I went about my business. During this time, I applied for long-term disability (LTD) from my work. I couldn’t get out the door in the morning, much less manage my duties for 8-10 hours of thinking, walking, communicating, driving, and using the computer. My doctor told me she thought I had fibromyalgia. However, the LTD paperwork required that any fibromyalgia diagnosis must come from a rheumatologist. Here was the catch, without an autoimmune condition (or positive ANA bloodwork) no rheumatologist would see me or let me set up an appointment. I widened the search. I found a rheumatologist two hours away who would let me have an intake appointment. My hope was to take my file and get a diagnosis from her. My partner drove us up that morning. I went with guarded hopes, bringing not only my LTD questionnaire but also my questions for the doctor about my experience, what to expect, treatment options, etc. While she never completed an exam or asked me a single question, the doctor proceeded to berate me. She told me I was “lazy,” and needed to “get back to work.” She most definitely was not giving me a diagnosis or helping me complete my LTD paperwork. I left the appointment feeling diminished, belittled, and uncertain of where to go next. She wasn’t the last of the awful doctor experiences I had, but she was one of the worst. Thankfully, I have a good deal of privilege (whiteness, education, access, a supportive spouse, etc.) and I persisted. Eventually, my search led me to a doctor that anyone who has fibro should know about. Her name is Ginevra Liptan and she, herself, has fibromyalgia. She developed it while in medical school. She knows firsthand the ways people with this disease are marginalized, overlooked, and dismissed. In an effort to find answers for herself, she has become a powerful resource for others with fibromyalgia and encourages multifaceted, holistic treatment. I’m incredibly lucky because Dr. Liptan practices just a couple of hours away from me so (thanks, again, to my able-bodied partner’s willingness to take me) I was able to have several appointments with her. She spent time listening to me and asking questions about my social history, not just my symptoms. She asked about whether I practiced mindfulness, the health of my diet, and the quality of my relationships. She did the standard touch tests, but she also talked to me about sleep hygiene and daily activities. From that first rheumatologist to Dr. Liptan was the difference between feeling all alone in chronic pain and illness and feeling like I had someone in my corner – leaving with resources and a way to get some traction on this illness that had left me hopeless and unsure of where to start. That was 10 years ago. I still have fibromyalgia. There are still times when I feel like I did in that second paragraph. But I don’t feel that way all day, every day. Writing that last sentence feels like a miracle. There were times that I didn’t know that relief of some symptoms, even some of the time, was possible. It is. Positive change is slow, while negative change (flares) come on quickly. Disease management takes attention to self-care and daily habits: everything from what I eat and whether I stretch or exercise, to the quality of my thoughts and how I spend my energy. Looking back now I can see that I’ve come this far because I have a fundamental belief that 1) I’m worth it, 2) better practitioners are out there, and 3) no one will advocate better for me than me. When our bodies are worn out, exhausted, and in pain all the time, it is so hard to do our best thinking. When others (especially doctors) doubt us, it can be particularly demoralizing and difficult to stay steady and keep our spirits and determination up in the face of that afront. However, there’s nothing more important than getting the care you need. In the words of Robert Frost, “the only way out is through.” So, take breaks, call a friend, get support, punch a pillow in frustration, get some therapy, do whatever you need to patch yourself up and get back on the path. You’re worth it. While I fully believe that I am not my diagnosis, there is power in knowing our diagnosis so we can start getting the care and treatment we need.

Community Voices

Chronic Migraine help needed

I have had daily chronic migraine since 2004. I know that doctors want migraine diary kept.
Does anyone know of an app that is for having migraine daily with no end or beginning, just the severity of the pain changes? #chronicmigraine #Migraine

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Community Voices
NF24

Disappearing act

So I am new to this community. I have been suffering with depression for the past 20 years and have just recently been diagnosed with it. Unfortunately this is cause of many many years of parental and cultural dipriovity. I am Iranian and in our culture mental health is not something that is looked at. Depression doesn’t exist in our culture. I have been working on myself and my mental health with my therapist and have been working on it hard. I have to add I have two young kids, one 3 years and other 4 months olds.

I’m exhausted, I’m depressed and want to disappear. Even though I am depressed and want to disappear everyday, I know there ar many people that depend on me. It gets exhausting. If my anyone asks if I am ok I say yes, because it’s exhausting to say I am depressed, tired, I have no control of my mind every time some one asks about my feeling .

My fear is that I won’t be good father to my kids and I won’t be a good husband to my wife. I am tired.

I have to say, I work really hard for my “normal” but I just don’t know what else I can do….

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Community Voices

I’m a mom to 3 kids, now 5, 8, & 9, and have had depression since childhood. I’m not the mom I always wanted to be, but I do the best I can. I’m on medication that helps a lot, have been through a lot of therapy, and still see a therapist every 2 weeks. It’s hard to even get out of bed and do the least that needs to be done. However, I just lost my grandmother, who raised 6 kids, while working as a teacher and taking care of many people in their church, as her husband was the preacher (leader) of the church, and that was expected. She was the kind of person everyone loved, and she loved people and took care of people with everything she had. Her children adored her. She wasn’t perfect, but she did everything with her whole heart. I realized, as I watched her die this week, that I wanted to be like her, to the best of my ability. If I were to die, today, my legacy would be that I slept too much, and couldn’t do anything productive. I don’t know how to do what I need to do, but I can’t let myself waste my life like this, either.

1 person is talking about this