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    How true is this? Happens to me all the time.

    <p>How true is this? Happens to me all the time.</p>
    2 people are talking about this
    Community Voices

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    Community Voices
    Community Voices
    Community Voices

    Confirmation #EM Confirmation

    It has been almost 2 months today that I have lived with EM. I have had a terrible time with the original Rheumatologist whom I consulted with and three weeks ago I made an appointment with another Rheumatologist. She was my first choice, but everyone told me to go this other one I went to in the first place. If only I had listened to my instincts I would not be an inpatient now in hospital.

    I’ve been in and out of hospital at least four times in the past 2 months; almost died during this last admission all due to him making a mistake and him not communicating with me.

    Living with EM is literally like being in hell with the devil - the idea of a never ending burning territory filled with horrors and always on fire. He let me go through this pain without any help. All he told me to do when I left his consulting rooms was to use ice packs, put my feet and hands in a bowl of cold water and /or elevate the legs. That was it! I was gobsmacked as the consult also cost me close to $400 and I came out of that office knowing exactly what I knew before going in there to consult with him.

    It is fantastic that I have come across a group of EM sufferers as I thought that the disease was sooo rare that people asked me how I was, I thought they must be thinking that I am crazy describing my extremities as being “on fire” and the rest. I was so happy (in the EM sense) to know that I was not imagining it. That the redness, the fire, the itch, the excruciating pain was for real and I wasn’t making it up.

    Thank you for being there - your existence has confirmed mine and I’m hoping that together we will be able to live through this destructible, excruciating painful disease.

    Youmna Ouraybi

    How It Feels to Parent a Child With a Rare Disease

    Most people who go through hard times are familiar with the expression,“When life gives you lemons, make lemonade.” My question is, what do you do when life gives your child a rare disease? Youmna with Lynn. A year ago my beautiful and smart princess Lynn, had her first erythromelalgia symptoms, right after her 8 th birthday. Needless to say the whole experience has been very painful and challenging for all of us. The most painful of all was realizing this is a rare disease that has no cure whatsoever. What’s even more devastating is the lack of an effective treatment to alleviate the daily pain she lives through. Lynn lives with constant pain. I also live with the daily emotional pain as I watch my daughter struggle, ever so helplessly without being able to take away her pain. A mother’s role is hard enough, but it is a role I cherish dearly and I find great pride in it. The fact that doctors know so little about this rare disorder has definitely made my role more challenging. I don’t know what to expect, because doctors know so little, they have no sufficient advice for me. I have all these questions doctors cannot answer. I remember feeling terrified when Lynn’s symptoms were first misdiagnosed as an allergy. I was thinking about all the new nut-free recipes I would have to learn, the EpiPen that we will have to carry with us everywhere she goes, of how I will have to notify the school and make sure we travel on a nut-free flight.I had it all figured out in my head, because there were clear guidelines to follow, and still I was terrified. But this — the fear of the unknown, the fear of being helpless, how do I face it all? The feeling of guilt is unbearable. I feel guilty for trivial things. I feel guilty for being pain-free, while Lynn is not. I feel guilty for being able to wear closed shoes, while Lynn can only wear open sandals. I feel guilty I am able to walk, while she has to use a wheelchair. I feel guilty for being able to do all the things that she can’t do. Then I wonder about other moms, who have terminally ill children, moms who have lost their kids in sudden accidents, and then I feel guilty for feeling guilty. It’s a vicious cycle I often find myself stuck in, and have to fight to get out of it. I know I have to be a role model for my daughter. I have to be the source of her hope and strength. I try to practice what I preach to her every time she wants to quit. How will I convince her to fight this devastating condition? How will I teach her to count her blessings? How will I encourage her to enjoy the little things in life and embrace the pain-free moments? How will I talk her through the pain, if the words don’t resonate from within? It’s difficult when you are stuck on the guilt train that keeps taking you to the ends of this mysterious ride and back. Unfortunately, I don’t have the magic answer, but I know that I’m learning from the best, from my warrior princess Lynn. I know I’m fighting my own battles along her side. I know when life gives you a rare disease, you can’t give up, you have to go through the ups and downs. Patience is a learning process that has many devastating moments hidden along the way. You have to get dirty as you process all the pain and keep going through it day in and day out. You have to feel guilty and blessed and all that is in between. “Keep faith my warrior princess.” That’s what I keep telling her and reminding myself as we continue on our rare journey. We want to hear your story. Become a Mighty contributor here .

    Melissa Bogner

    Finding Support When Living With a Chronic, Rare Illness

    Melissa and Laura. When I was diagnosed a year ago with a rare and incredibly painful disease called erythromelalgia (EM), I felt like my world had abruptly come to an end. Not only was I surprised to learn I had a rare disease affecting only 1.3 in 100,000 persons, but it also wiped out any hope I had in a magical 10-day prescription cure. EM makes a person feel like they’re literally burning alive. The skin also becomes painfully red and warm to the touch. It’s not uncommon to see an EM sufferer wearing sandals year-round. Although it can impact any part of an individual’s body, it usually affects my hands and feet the most. I spent a year fumbling around with my mixed feelings as if I were in my own “push me, pull me” game. I kept going back and forth, trying to accept my newfound disability. It reminded me of how a couple feels when they’re emotionally stuck in a dysfunctional relationship. Instead of ending it, they constantly break up then get back together over and over again. However, with a relationship there is a choice to leave. With a disability, there is no option to leave and no end in sight. I wanted to revive the cheerful person I had been before this condition invaded my life. I also needed to learn how to cope with my unpredictable symptoms. So, I joined an online EM support group hoping it would help me better deal with my new everyday struggles. A kind, optimistic woman instantly befriended me in the group. Her name was Laura. Our online friendship helped me in ways I never imagined. Because she had been diagnosed a few years prior to me, she understood my early stages of anxiety, fear, and most of all – my type of pain and emotional suffering. She was able to empathize like no other could unless they had this condition. Our friendship bloomed and whenever either of us needed encouragement to face our challenges ahead, we supported each other. We began talking about good things happening in our lives too. I told Laura how excited I was when my husband had surprised me with Riverdance tickets for our anniversary. Although I eagerly anticipated the show, I immediately feared the long walk to the stadium. By the time we reached our seats, pain had overwhelmed my body to a point I had to sit down and take some deep breaths. Along with the misery came a flood of sad emotions. Events like concerts, shopping, festivals, and sightseeing weren’t fun anymore because I’m incapable of walking for long periods at a time. Melissa and Laura. After the show that evening I realized how deeply I had been struggling with the thought of using a wheelchair… but why? I confided in Laura who had previously ordered her wheelchair and she gave me a new perspective. She said her wheelchair would allow her to enjoy her life more. She’s able to go out with her spouse, friends, go on vacations, and comfortably enjoy seeing more of what the world has to offer with less pain. She keeps her wheelchair handy if she needs it. She was right, and in that moment my anxiety faded away. I had been pretending to the outside world that I had no physical struggles — which served no purpose. After a year of chatting over the phone and computer, we coordinated dates and my husband and I made the eight-hour drive to Massachusetts to meet her and her spouse, Matt. Because Halloween is my favorite time of year, we decided upon Salem as our destination. It was an ironic location choice considering the many women (thought to be witches) that were actually burned alive in historical years. Although Laura and I weren’t witches, we did have “burning alive” in common. We had a wonderful time. Halloween vendors filled the streets and we enjoyed every moment the town had to offer. Although our pictures depict us as healthy individuals, there were several moments when we consoled each other over the pain we were feeling. We couldn’t walk far without taking a break. It’s amazing how well we’ve mastered the art of pretending we’re not burning alive. We’ve learned to cooperate with our condition as best we can. Laura’s optimism helped me to become a better friend to others who may be struggling with our same disease. Moreover, I’ve made some amazing friends along the way that I wouldn’t have met if not for my condition. Follow this journey on  Burning for Hope We want to hear your story. Become a Mighty contributor here . To learn more about EM, please see the following short video:

    The Challenges of Dating With Erythromelalgia

    All my life I have always been the hopeless romantic type, never believing I would find that Allie and Noah from “The Notebook” kind of love, but anyone that has ever tried to date with a rare disease knows that it’s an unrealistic hope. As years have passed and my disease has worsened, I’ve come to realize it has become especially difficult to find “the one” in a dating pool that has shrunk to be a swampy puddle. Now let’s add a significant other’s acceptance of chronic pain to the equation and you might as well search for a mystical creature to utter the words “in sickness and in health.” With the abundance of dating apps out there, it’s not so much the difficulty of getting a date, than it is keeping a person around after you tell them your personal story. For the majority of my life, I’ve been battling a rare and exhausting disease called erythromelalgia (EM). Simple activities such as walking, sleeping, eating or standing become difficult due to sudden bursts of pain called flare-ups. Some might refer to EM as an “invisible disease.” It is felt rather than seen, so depending on a person’s affected area, you are able to conceal your disability. This makes it almost impossible for outsiders to notice — a task I’ve became a pro at. Being an adolescent and wanting the acceptance of the opposite sex, a person is socially conditioned early on that you are about appearance not personality. So, I began the practice of hiding my disease during my teenage years. Out of sight, out of mind right? I would wear pants to cover my legs and though extremely painful, sneakers and socks to cover my bright red feet. Now as an adult in my thirties, I still do my best to conceal my illness, in fear that a man won’t give me the chance of love due to a circumstance I have no control over. How in the world does one explain to a future significant other that your feet/legs feel like you are walking on hot coal, so you can’t go on that romantic date they planned? Back track a few months, after much determination from friends, I eventually signed up on a dating app on my phone. I knew it was cheesy but I kept telling myself that I wouldn’t need to go out and actually do the difficult chore of walking or standing around to meet people. This way, they came to me. And they did. One in particular was attractive and seemed like the whole package. I made the decision to chat with him for a few weeks before we met in person. I was hoping he would get to know my personality before he found out about my disability. After a nice dinner date, he asked if I wanted to take stroll to an area in downtown that had a spectacular view, but was a few miles away. Some women might find this gesture romantic and jump at the opportunity, but for me, it sent beads of sweat rolling down my spine. Looking down at my cute boots I strategically wore to cover up my EM, I swallowed hard and nodded to say, “Let’s go.” I was anticipating the flare-up that was going to come after walking those “few” miles.  As predicted, it did. I screened my pain as much as I could, but my cover was being blown by my sudden silence and breaks into hot flashes. My feet were on fire and felt like a ton of bricks had collapsed on them. Noticing my heavy breathing, he asked if I was OK. Despite the agony, this wasn’t the time to break the news, so I said yes and kept walking. Upon arrival to the destination, without a care of who was around or where we were, I ripped off my boots with my socks and embed both feet on the cool pavement. A sense of relief came over me. My date gave me a confused look, in which I replied, “Sorry these shoes were killing me.” Trying to lighten up the awkward mood, I followed it up with “I promise my feet don’t smell.” All while hoping it stayed dark enough for him not to see the pigment of my bright red feet. After a few minutes, my flare-up finally subsided. I was back to normal but in true EM fashion, that didn’t last very long. My date mentioned that he might surprise me with a trip to my favorite amusement park. Again, to some this was the perfect scenario but for me, anxiety filled my body, paving the road for the next flare-up. I now have the extra burden of explaining that a trip like this needed to be strategically planned. How do I express that he needed to push me around in a wheelchair because I can’t walk or stand for hours, or that the weather needed to be below at least 85 degrees because heat triggers erythromelalgia flare-ups? Sure some might say, “If they like you enough, they’ll accept you as you are,” but that’s not always the case. I have had my share of expressing to a man that I can’t do certain activities due to my disability and never hearing back from them. Although we have thick skin, being rejected for a shallow reason and without a care for understanding our disease can send our confidence on a downward spiral, leaving us to believe that we deserve less than others. Almost daily we battle a silent disease. To some we look normal, which in a sense can be a good thing, but without others’ understanding, it can eat you up alive trying to conform to the “ norm.” We have our good days and our bad. We love to be active, but some activities need to be altered or absolute all together in order for a good day not to turn bad. Those with chronic pain have the will of a hundred lions. See, those with disabilities like mine, who are searching for their other half, aren’t looking for pity or a caretaker. We aren’t looking for advice on what might help us when we tell you about our disease, because believe me when I say this, although we appreciate it, we’ve probably done it all. We are looking for a person that will love us for us. Please understand when we tell you about our struggle, our vulnerability is at stake. We don’t tell everyone our history, but when we do, it means you’re special to us. Our pain is like a vicious cycle. We live day-to-day with unpredictability, so we might not be able to do normal activities, but that just makes us appreciate your small gestures even more. We are not here to burden anyone. Having a disease does not make me any less deserving of human emotion. Following the date, I was angry at myself for not expressing who I really was. What made this little detail any different than how I would answer the “tell me about yourself,” question? Wasn’t this me, after all? I know I’ll eventually find the one who will look past my erythromelalgia and love me for me. I am not sorry for my disease, but I am sorry for those who bypassed getting to know me and missed out on my awesomeness.