For Grace

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For Grace is devoted to promoting better care and wellness for women with chronic pain.
Cindy Lopez Smith

Premenstrual Dysphoric Disorder: Symptoms and Causes

I have been keeping a secret from my loved ones, but I wanted to share it in honor of Premenstrual Dysphoric Disorder (PMDD) Awareness Month, which is in April. I was diagnosed with PMDD in November 2017 and to publicly share that with you is scary; it makes me feel very vulnerable. I want to share my story because PMDD doesn’t have much exposure. I want women who relate to my experience to go to their doctor with some knowledge and to be able to advocate for themselves. I want them to know that this is a real condition. So what is PMDD? PMDD stands for premenstrual dysphoric disorder. No one knows the exact cause of PMDD, but there are a few theories. Women with PMDD are hormone-sensitive to the fluctuating hormone levels that occur every month. PMDD is not premenstrual syndrome (PMS). According to the U.S Department of Health, about 75 percent of women experience premenstrual symptoms, while PMDD affects 3 to 8 percent of women of reproductive age. While both PMS and PMDD have physical and emotional symptoms, PMDD causes extreme symptoms that can affect a woman’s daily functioning and personal relationships. Despite its connection to a woman’s menstrual cycle, it is not a hormone disorder. It is a suspected genetic disorder with symptoms that worsen over time. It is not a hormone imbalance, but because I also have polycystic ovary syndrome (PCOS), my life is even more challenging. PCOS is a hormone imbalance which causes me to deal with other symptoms, too. It can be difficult to get diagnosed with PMDD because a lot of doctors misdiagnose or don’t believe their patients have it. There are no current blood, X-ray or urine test that can provide a definitive diagnosis of PMDD. You will need to chart your symptoms and receive other labs to rule out other possible illnesses. It took a second doctor to realize that I had PMDD after seeing me when my symptoms were at their peak and learning about my medical history. My first doctor ignored me when I said my symptoms appeared before my periods, and I begged her to look into it. I even showed her a symptoms checklist that I marked which showed I had all the symptoms of PMDD. Below are the criteria to be diagnosed with PMDD. Over the course of a year and during the menstrual cycles, five or more of the following symptoms must be present. These symptoms occur a week or two before your period begins and disappear within a few days of the onset of bleeding. Criteria for PMDD : Markedly depressed mood, feelings of hopelessness, thoughts of suicide or self-deprecating thoughts (more than just feeling sad or “blue”) Marked anxiety or tension (feeling “keyed up” or “on edge”) Marked affective lability (severe mood swings, feeling like Dr. Jekyll, Mr. Hyde; feeling suddenly sad or extremely sensitive to rejection) Persistent and marked anger or irritability or increased interpersonal conflicts Decreased interest in usual activities (work, school, friends, hobbies) Subjective sense of difficulty concentrating Lethargy, easily fatigued or marked lack of energy Marked change in appetite, overeating or specific food cravings Hypersomnia (sleeping too much) or insomnia (difficulty initiating sleep, middle of the night or early morning waking) A sense of being overwhelmed or out of control Physical symptoms, including breast tenderness or swelling, abdominal cramping, headaches, joint or muscle pain and others The disturbance markedly interferes with work, school, or usual activities and relationships with others. (It’s important to distinguish PMDD from less severe PMS –is there a significant change? Do you avoid social events, are you as productive and efficient?) When I read the criteria list, I cried because it was describing me. About 10 to 14 days of my cycle, I experience every single symptom on the criteria list. Some months can be harder than others. I had two periods, so I felt the PMDD symptoms for a majority of March. I was wound up from the emotional and physical stress of PMDD; I begged and prayed for my period to get arrive. It was a very stressful month. Women with PMDD experience a variety of symptoms monthly; no one is the same. The average woman with PMDD will lose between three to seven years of productive life due to her symptoms. This fact hit me deeply because I realized it had affected me for that long. My doctor believes I’ve had PMDD for many years because I have quit jobs and dropped out of schools due to my symptoms. I was dealing with heavy periods and symptoms from PCOS, but didn’t realize I had PMDD. I thought it was my PCOS causing me emotional issues. I started to think dark thoughts about my life. Feeling unworthy, ugly and that no one wanted me. I believed in my head that my husband would be happier if I were not alive so that he could be free and not be a prisoner to my health issues. These dark thoughts all went away once I started my period, though. This happened again for the next few months, and I caught on. It terrified me that I didn’t know what was wrong with me. I immediately made an appointment with my doctor, and she didn’t acknowledge or research my symptoms. I thought maybe it was just in my head and I should just let it go, but my symptoms kept coming every month, and were getting worse. I was very hopeful when we moved to New York and prayed for a doctor that was willing to hear me out, which I found. After a few months, I got diagnosed with PMDD. It brought me so much relief to finally be validated. This acknowledgment alone can bring wonders to someone with a chronic illness. It brings hope and strength to an already tired body. I believe God knew what he was doing when he moved us here. According to the Gia Allemand Foundation, “An estimated 15 percent of women with PMDD will [die by] suicide in their lifetime while a larger percentage experiences, thoughts about suicide and self-harm.” This percentage of women with PMDD and estimated rate of suicide shows 750,000 female suicides per year. That is from PMDD alone. They are more than just PMS symptoms when they cause harm, depression, irritability, rage or feeling out of control. These symptoms are affecting our relationships, jobs, schooling and lives. Premenstrual dysphoric disorder is a condition that many women may never know they have. For some of these women, it will be too late. The video below is the perfect representation of the mental battle a woman with PMDD experiences: As for my treatments, I’m seeing mainstream and holistic doctors. I meditate, eat healthy, work out and journal. I’m in support groups that inspire me when I’m at my lowest, and I give back when I’m at my happiest. I know women in their 20s who are getting their ovaries and uteruses removed so they can be free from PMDD. But I also know women who have done the procedure and regretted it. It’s difficult for me to comprehend. My husband and I are trying to conceive, but my periods cause me so much pain. There is not a single treatment that can “cure” this. Sure, there can be things that help manage some symptoms. But the thing about PMDD is it takes time to find your protocol. It may work for a few months and then stop. It’s very complicated, so this will be a long journey for me, my husband and my doctors. I want to find a way to manage my symptoms so I can finally live a life that doesn’t revolve around PMDD and PCOS. Suggested Treatments : Lifestyle changes Diet and Nutrition Alternative Medicine Homeopathic Medicine Oral Contraceptives Progesterone Therapy Antidepressants Mood Stabilizers Oophorectomy/Hysterectomy The main reason I’m sharing my story with my family and friends is for love and understanding. I’m struggling, I’m sick, I’m tired, but I’m trying. I want you to understand that when I pull away, it’s not because of you. I’m struggling to keep positive and mentally-sound when I’m dealing with PMDD symptoms, but also know when I reach out to you, it’s because I’m trying not to feel scared, lonely and lost. In March, I called a crisis hotline for the very first time because I didn’t have a way to reach my husband. My symptoms were through the roof and I dipped dangerously low. I’m so thankful for my friends who came over to hang out and comfort me. I had a specific friend who saw me at my worst and didn’t understand my situation, but she still supported and loved me anyway. I know some of you may not understand and that’s OK. A lot of women with PMDD, medical professionals and even experts don’t truly understand it either. I know my part in all of this is to share my journey and hopefully reach one person. I trust God in all of this; I believe he brought me here to finally get the care I need so I know I will be alright. To the women who are struggling with PMDD, you are not alone and you are loved. Please reach out to me if you need a friend. Sending you the stars, the moon and love.

How the Empowered Chronic Illness Community Helps Me With Fibromyalgia

I have had fibromyalgia for the past 25 years, since the age of 30. It took six years for diagnosis. Like so many struggling with chronic pain, my complaints were minimized, dismissed and left untreated. But even once diagnosed, I was still offered neither treatment nor guidance, just an “I’m sorry, it must be fibromyalgia.” I did the research myself, directing my own care. Doctors were generally cooperative with my requests for various lab tests or medications, but I was always made to feel a little like a pest or hypochondriac. It saddens me in retrospect to see that I did not have to endure much disrespect or disinterest from doctors to sideline myself from the medical system. I was so vulnerable and gullible that I internalized the eye-roll attitude almost immediately. I became convinced that I was overreacting to the pain, that my primary issue was anxiety. In part, I wanted to believe this because the symptoms were pervasive and frightening, and I wasn’t receiving the attention or care I needed. So I latched onto the hope that perhaps my symptoms would clear up if I could just calm down, not be such a “type A,” not be so… me. (Although I did have a diagnosis of fibromyalgia, this was still widely believed to be a psychosomatic illness). As I bought into the lie, so did those around me. My husband, supportive though he is, felt that if the doctors could find nothing wrong, then my symptoms must be stress related. Friends and family also reacted this way, in part due to the stereotype of the hypersensitive woman, but also because I presented this way. I was ashamed of my relentless pain (as if it were my fault), so I tended to psychoanalyze myself when speaking of my symptoms. It’s as if I were trying to convey that I had this all under control, in some convoluted way. Unless I had a real fright with the onset of new symptoms, I avoided doctors and tried my best to ignore the pain – or I turned to self-help books, spirituality and alternative medicine. These avenues in some respects were as bad or worse than mainstream medicine in their tendency to blame the victim or attribute pain or illness to “wrong” thinking or beliefs. I also fell into a lot of self-blame and loathing due to my struggles with food: over- or undereating, and the consequent weight fluctuations. When through the help of a 12-step program I began to eat regular, healthy meals, I hoped for and almost expected a miraculous recovery. I did feel better, certainly. But I also discovered that balanced, healthy eating does not cure fibromyalgia. Though I continue to live with pain, a great burden has been lifted in finally coming to understand that my pain is not the result of my very human emotions or struggles, that it is not my fault, that it is real. This has happened because those of us with chronic pain are now speaking our truth. I would not have expected, for example, that reading The Mighty, or watching Jennifer Brea’s TED talk and documentary, “Unrest,” or witnessing Lady Gaga’s courage in honoring her limitations would make such a difference. But we are in the midst of a paradigm shift. Those with chronic illness are no longer ashamed nor invisible. We’re connecting with and respecting each other. In the recent past, all but close friends and family would be unaware of our ordeal, either because we were homebound, or felt pressure to “pass” when in public. Doctors largely dismissed us, which in turn meant less money for research. In such an environment, it was inevitable that many, like me, simply withdrew. I believed my illness and the attendant depression and anxiety were my fault. I felt and therefore was very much on my own. It is truly uplifting to see all that changing. I am grateful to all who share openly and honestly, and to those who read and listen. We may or may not have found a solution to our physical afflictions, but at least we no longer need be invisible, isolated or blaming ourselves. So thank you, my fellow pain warriors, for helping me to reclaim my sense of self, community and to feel at peace, if not in body, at least in mind. We want to hear your story. Become a Mighty contributor here. Getty Image by prawny

How I Began to Heal From 20 Years of Back Pain

This September, I told 2,200 intimate listeners at TEDx Boulder how proper pain treatment allowed me to work as a federal civil rights attorney after a surgery left me unable to sit, stand or walk and in severe pain. This is my story. Twenty-three years ago, I was ensconced in my dream job as an attorney in the Civil Rights Division of the Department of Justice, equally enjoying D.C. museums and the neighboring Shenandoahs, when something happened to change the course of my life. I was working at my desk when my back started to burn; it felt like acid eating my spine. My muscles seized and threw me from my chair. As I curled on the floor, my body seared with pain. The real trouble began the next day and in the days and weeks to come. The pain never stopped. It only intensified. At the age of 30, I could barely stand. Sitting was impossible. Reclining relieved some of the compression in my spine, so it became my dominant posture. I’d commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Sometimes during this period, I was able to venture out into the world lying on a folding lawn chair. But for many, many years I was entirely bedridden. The cause of this reversal was a surgery, when a physician severed nerve plexuses in my spine – major networks serving my pelvis, legs and lower back. The pain and muscular weakness only appeared when the damaged nerves grew back. The doctors told me that there would be no cure, that I’d never get better and would only worsen. When this happened, I was enforcing the Americans With Disabilities Act, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV. Like so many other people with disabilities, I continued to work and held together a life as best I could.Using video teleconferencing, I negotiated with the San Francisco 49ers and the Giants and the Walt Disney Company while reclined. I won arguments in federal court from my folding lawn chair. I drafted the current regulations under the ADA, coordinated with the White House and supervised thousands of cases by hundreds of attorneys across the country from a screen and well-camouflaged bed. None of this would have been possible if I hadn’t had access to appropriate pain management, which included treatment with opioids. Although it took considerable time and rehabilitative effort, I slowly and eventually recovered my mobility and health enough to enjoy hiking in the Colorado mountains. A combination of pain management, integrative treatments, and a self-discovered, body-based form of meditation — all contributed to healing a condition that was supposed only to deteriorate. I’d like to say that my dance with pain ended there. Just last summer, as I was hiking in Telluride, Colorado when my legs buckled underneath me. Years without weight bearing had eroded the disks in my spine, and once I was up and active, my nerves became compressed and my vertebrae fractured. When conservative treatment failed, I underwent spinal reconstruction with artificial disks and remodeling of the vertebrae. When I spoke at TEDx Boulder, it was my first time standing post-surgically without a brace. All of the attention on the opioid epidemic inspired me to tell my story because proper pain treatment gave me a life, and I worry about people in serious pain today who are losing access to treatment. People in pain need a voice in the conversation, especially since severe or persistent pain affects more Americans than opioid abuse. I am doing what I can, writing and speaking about pain, resilience, and how we heal. We want to hear your story. Become a Mighty contributor here .

When You Can't Sit Because of Chronic Pain, Fibromyalgia

All sorts of things can go wrong with these bodies of ours. But still I feel somewhat embarrassed that I can’t sit down. It’s not easy to explain to others, especially since neither I nor the doctors know the exact cause of the problem. I have had fibromyalgia for 24 years, and I fractured a mid-back vertebra (T12) falling from a horse 14 years ago. Since then, I have had varying degrees of nerve pain in my hips, which would come and go. But the past five years it has been intense and unrelenting. It seems to have been triggered during a year when I was underweight and lacked sufficient padding. But despite gaining weight since then, it has not diminished. I have lived with a problem knee for most of my life, and expected I might lose my ability to walk, or at least to walk with ease. But I never imagined I’d lose the ability to sit. So often this affliction seems surreal, absurd. Of course, embarrassment and the absurdity of it are the least of my issues. As you can imagine, my activities are severely curtailed. These past several years I have not traveled, attended a meeting or movie, nor any other sort of event. Occasionally I’ll go out for a short lunch or coffee with friends. But I must sit on a special cushion and clench my glutes the whole time to minimize the pain. It hardly makes for a leisurely outing. Due to my knee problem, time standing or walking is limited, too. So between these afflictions, I am unable to work. I do my best to take care of the housework and cooking and run short errands for my husband and myself. But most of the day I’m supine on the sofa or bed, online or reading, meditating or just being. I recline on special air cushions, but still must shift and turn every 10 minutes or so to manage the pain. Although the pain is focused in the sitting bones, it is also active in my lower back, thighs and every other part of my hips. The days often seem very long. Pain — it should be so simple to treat, or at least mask over. Give it time, take medication, try acupuncture, electrical stimulation, massage, etc. Of course, I’ve done all that, and nothing touches it. I put most of my faith in time, but at this point — five years in — I am accepting that this may be my lot for the rest of this body’s life. I’m 54, which is not so young, but thoughts of another 30 or forty 40 like this are often distressing, frustrating and depressing. I know I am not alone. No one wants pain or disability. But we have what we have. I have not given up hope that somehow, someday this problem will diminish or resolve. But I am at the point where I also must accept that this is where I am right now, with no foreseeable end in sight, and do my best to shift my attention to appreciate all that is good in my life. The first thing I can do is release the shame of having an unusual condition with no sound explanation, and the guilt of not being able to participate in life as I once did. Bodies do what they do, I did not cause or ask for this. And I am replacing old values with new, narrowing them down to what really matters each day for me: learning and loving. I have certainly learned a lot from this ordeal, most importantly compassion and patience, both with myself and others. And I continue to explore and learn something new each day. I have especially enjoyed spiritual exploration, which both intrigues and comforts me. And nothing can stop me from loving. I love my husband, cat, my few friends and family members. And I love the world. I just can’t judge anyone anymore. I know we all struggle, and I love and admire all of us for that. Because I can’t get out and be of service as I’d like to, I spend a lot of time praying for or sending loving vibes to whomever comes to mind, whether it’s a close friend, someone I hear about in the news, our country or the whole world. Someday I may sit up again with comfort. That would be glorious. I often dream of this, both in sleep and waking life. But this vision is beginning to seem less and less likely ever to arrive. That will be OK, too, as it must be, should reality offer me no other option. And so I will continue to toss and turn, and love and learn. As long as I can do that, this is still a beautiful life. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: ladi59

Kacy Anacan

Visiting Disneyland With an Invisible Illness

Oh, Disneyland! Memories abound from when my family had annual passes when my sister and I were growing up (yeah, they were affordable in the 80’s). It was the best feeling in all the world when my mom would wake us up on some random weekday morning and announce we’d miss school and were headed to Disneyland. Oh man… those were the days! Fast forward 30 years and several autoimmune diseases later, and that once-excited Disneyland announcement is now met with trepidation and days of planning, plus hoping and praying I can be well enough to make the trip. Questions abound, like will I feel good enough to go that day? Will we get there and have to leave soon after because I’m too fatigued? What food can I eat? Will I ruin my family’s day if we need to bail? Oh yes, let’s not forget the fact that I’ll have to rent one of their motorized scooters just to possibly make it through. I’ve been to Disneyland twice since my health changed. The first time was still when they had more leniency for people with disabilities. Man, that was nice! The second time, well… that’s why I’m writing this blog post. We had dear friends visiting southern California from Colorado, and we planned to meet their family at Disneyland to spend the day together. My friend was recovering from hip surgery, so I had a buddy with a motorized scooter. Score! Side note: I don’t know what happens to me when I’m “behind the wheel” of one of the scooters. I’m a menace and a total speed demon. You know, maxing out at 7 mph. I’m a rebel like that. We had enjoyed a couple of rides and were headed off to “It’s a Small World.” They have a special line for folks with disabilities, so our families waited in that line. My friend and I were chatting and our husbands and kiddos were chatting, and then my friend paused from our discussion. She was silent for a little bit. She then leaned in and said there was an older couple in line behind us, and the lady just told her husband while pointing to us, “Those girls look totally healthy. I bet they just rented those scooters to get their families to the front of the line.” Sigh. Keep in mind this is coming from someone who was also in the line because of a disability. Even the happiest place on earth has its mousetraps. There is no other way to put it… this kind of stuff sucks! Most of us who battle invisible illnesses get that most people don’t understand. Some are really well-meaning and some are just plain ignorant.Although the woman’s comment did not detour me from enjoying my day with friends, later I did reflect on what she had said. The comment itself was minuscule in the scope of what others have said to me. Yet, all of the hurts, losses and pain that come from illness add up and are severe. It’s lonely. It’s hard. At the same time, I am grateful for the lessons it has taught me and continues to teach me. I’ve become far less judgmental of people. Everyone has a story. Everyone has their own invisible pain. My hope in battling this ever-present, raging war with chronic illness is to learn as much as I can from it. To be open to its teachings. To be transformed by its pain. If you have an illness, what are the lessons it teaches you? A version of this post originally appeared on Sisters Undercover. We want to hear your story. Become a Mighty contributor here.

Cynthia Toussaint

Accepting My Complex Regional Pain Syndrome and Writing a Memoir

As a woman ravaged by intense pain and the loss of virtually all my life’s goals, I have been transformed by struggling and love. And brought to a higher place. It all began 34 years ago when I was with the man I love, John Garrett, who is still in my life today. I was a 21-year-old ballerina with a bright future — one where I would dance, act and sing. The core of this was ballet — my greatest love and my identity since I was 7. Ballet meant more to me than anything else. I didn’t think anything could be more beautiful and there certainly wasn’t anything that made me feel more whole. Growing up, I was always in leotards with my hair in a bun. In ballet, you’re either right or you’re wrong. I loved that structure and discipline. Nothing felt so good as the high of it, the sweat, putting that movement to the music. This was my absolute passion. Nothing was going to hold me back. Nothing. Then it all came to an abrupt end. A minor ballet injury in my right leg triggered a chronic pain disease, complex regional pain syndrome, too often called “the suicide disease.” For 13 years, the doctors said my problems were all in my head. I was left bedridden for a decade and unable to speak for five years while the CRPS spread throughout my body and attacked my vocal cords. During that time, most everyone in my life left me. I was now just a young woman who used to be a ballerina. I had planned my entire life around performance. Then, in a moment, it was gone. At first I wouldn’t accept that I wasn’t going to dance again. As the months and years ticked by, I watched others go on with their lives. When I couldn’t live in denial anymore, I became bitter, hateful, even suicidal. Wracked with anxiety, depression and waking with night terrors, I was lost. I was no one. In those dark years, when anything negative happened, I raged, hurt myself, hurt John. I became a verbally and physically abusive person because I thought I had the right. After all, I was suffering, a victim who’d been cheated out of her life. I was drowning in self-righteousness. I never imagined I might someday turn my pain into something of value. Then, almost 20 years ago, in ways I didn’t understand at the time, I began making positive shifts in my life. I knew I wanted to help others avoid what happened to me. I dropped the Cynthia-as-ballerina identity, a humungous shift, and began to reinvent myself. Finally, and most importantly, I accepted my pain as an intimate part of me and, indeed, my new normal. I found a voice as a healthcare reform advocate and launched For Grace to help other women with life-altering pain. But I was still searching for peace. I needed to purge and self-examine. Writing our memoir, “ Battle for Grace ,” John and I were given the opportunity to re-visit our traumas and suffering. For the first time, I saw a world that was bigger, by far, than the one I was born into. As we wrote and read our story aloud, I saw up close the bad energy I’d created. But as the words were carved out, I realized I could stop this chain of pain and violence. Instead of resentment, I could practice appreciation. Instead of hate, I could enjoy love. Instead of blame, I could forgive. I forgave the doctors who failed me, who told me I was crazy. I came to recognize that they did the best they could. I no longer felt resentment for those who left me. They, too, were traumatized by my pain and the absence of any healing. I befriended my disease, and as I came to appreciate it as a part of who I am, I loved myself more deeply. I also discovered new ways to enjoy more healing and better tomorrows. The power of narrative therapy — in this case, writing our book — is a wondrous tool to re-examine our internal demons. That’s why I urge fellow sufferers to use daily journal writing to help them connect the dots and open the doors to positive action. Being comfortable with “what is” allowed me to let go of my dreams lost and exorbitant expectations. Once I honestly looked at my new normal, it opened the door to fresh possibilities. What is can be painful, but it’s the birthplace for peace and love. In the good times, I immersed myself in love. For John and I, for my circumstances, for everyone around me, even for the stuff that still caused me physical and emotional pain. I know now that real love, with real compassion and forgiveness, is a second-to-none healer. I now practice self-care. This puts wellness into my own hands. It’s all about diet, exercise, letting go of toxic people and, most importantly, spiritual meditation for myself and John and our planet. More and more, I’m letting go of the bad energy. Resulting in far fewer burdens and negative thoughts that make me sick. A gift to everyone, especially me. The greatest transformation for me is that I trust my gut and inner-wisdom to lead the way in my work, life and wellness. This is still a work in progress, but the impact of trusting myself is so profound it makes each of my days richer. I am awash, once again, in beauty and appreciation. This blog was originally published on Maria Shriver. We want to hear your story. Become a Mighty contributor here .