Kevin Beck

@kb719 | contributor
I'm a husband, dad, and former teacher. I live with erythromelalgia, peripheral neuropathy, CRPS, and a few other fun illnesses.
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Erythromelalgia, Neuropathy, CRPS, and Shoulder Surgery

I'm exhausted by the #ChronicPain that comes from #Erythromelalgia . The flares arise out of nowhere. That's in addition to the constant buzzing and aching that comes from the #PeripheralNeuropathy . Now, I need surgery to repair my shoulder. I'm concerned because of the uncertainty about how my body will deal with the pain afterwards. I have #ComplexRegionalPainSyndrome so even the smallest issue causes intense and lasting pain. My pain doc has a stellate ganglion block on standby in case I need it following the surgery. The decision to have surgery was that post-surgical risks were less than not having it. Plus, I struggle using my arm right now, and I can't go on like this. I'm trusting my doctors, grateful for my family, and relying on my faith to see my through this.

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My flare-ups with #Erythromelalgia come in patterns that usually last about a month before they change. Currently, they start in my ears and face in the early evening and move to my legs and feet as the evening enfolds. These last at least 2 hours, and it's not uncommon for them to go for 7-8 hours. Does anyone else get flare-ups in patterns? #ChronicPain #Neuropathy

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Kevin Beck
Kevin Beck @kb719
contributor

What It's Like Being a Father With a Chronic Illness

My wife and I have been married for almost 26 years, and we have three children we are very proud of. The oldest is majoring in math and statistics, and she has an internship through the National Science Foundation. Our second daughter is about to begin her freshman year in college majoring in music performance. Our son will start his senior year in high school. He is involved in theater and intends to pursue social work. Like all families, we have our challenges. One is my rare disease. I live with erythromelalgia (EM). This disorder affects my neurological, vascular, and dermatological systems and causes relentless burning, redness, and swelling in my feet, legs, hands and ears. My children are exceptionally understanding about all of this. On Father’s Day, though, I recognized how much this dreadful illness has shaped the way I understand myself as a father. 1. My chronic illness affects the way I perceive my appearance. Since receiving my diagnosis, I have retired from teaching to receive disability “benefits.” Now my daily wardrobe choice involves which pajamas to wear. I spend 20 or more hours every day with my legs up because walking and even sitting triggers flares. Showering causes intense pain, so I limit that to about every other day. And I shave about a couple times each month. Sometimes when I look in the mirror, I wonder who that guy is. Another facet of EM swipes away my fatherhood self-image. Because I grapple with painsomnia, I sleep on the living room couch most nights. When my kids go to bed, they see me on the couch. In the morning, they see me lying there, and I am still there in my pajamas when they get home. I feel embarrassed by my appearance. I want my children to see me as someone who is strong, dynamic and active. But I can only offer an unshorn couch potato in his pajamas. Yes, chronic illness has conjured up body image issues in a middle-aged man. Whether you call it ego, pride or hubris, a burning sense of shame outpaces the neurological burning in my legs. Maybe I harbor old-fashioned beliefs related to what a father should do and be. Perhaps I need to follow my middle daughter’s advice and “smash the patriarchy.” And I would, except my body hurts too much to move. 2. My chronic illness affects the way I perceive vocation. As a father, not having a job is emotionally painful. Working provided me with a sense of purpose, meaning and accomplishment. Even when I have been unemployed, I felt that I was at least trying to work. However, now that I am permanently disabled, I have nothing to do. No schedule, agenda, or goals to accomplish. I have tutored a little bit online, and I write as I am able. But EM will not allow me to commit to a fixed timetable, and that makes holding down a job difficult. My son has a minimum wage job. If he worked all year at that rate, he would earn almost as much as my annual disability payments. How does that affect my sense of fatherhood? I feel like a blob who does nothing but lay around all day. My kids have assured me that they understand my plight, and they have never said or done anything to suggest otherwise. Yet I still feel that I am not fulfilling my role as a functioning father. This is not their issue; it is mine. 3. My chronic illness affects the way I have fun with my family. I have not been able to spend down time with my family as I would like. My oldest daughter’s college is a two-hour drive away, and I simply cannot be in a vehicle for that long and then visit. She is gracious and understands. We text nearly every day and talk often, but I miss not seeing her. Meanwhile, EM has caused me to miss school events like concerts, plays and award ceremonies. I have been able to see photos, recordings, and even live-stream the events, but that does not feel the same as being there. We play some video and board games together, but there is no more basketball, racquetball, or working out at the Y. I insist that my family goes on some day trips to get out of the house and have fun together. My absence carries with it a sense of guilt and loss. Dads should have fun with their families, but EM has changed the way I enjoy time with my family. If I had known this disease would overtake me, I would have relished each family hike, vacation and walk to the park. 4. My chronic illness affects the way I contribute around the house. EM has changed my ability to work around the house. I perform household chores as I can, but I am unable to stand long enough to sweep floors, wash the dishes, or do the laundry with any kind of regularity. I feel too weak to do yard work, and on most days the burning in my body is too great to cook. One of my favorite “dad chores” was shoveling snow. This can be physically demanding, but I love the meditative aspect. My son has taken it over, but I am not sure he has discovered the Zen of snow shoveling quite yet. Maybe he never will, and I have to be all right with that. In addition to the kids doing almost all of the physical jobs around the house, they take care of me. They perform simple jobs like filling my water bottle, and using shopping apps to order the groceries. All of this points to the fact that my role as a father has changed. Instead of “doing for” others, I have had to learn how to submit myself to letting others “do for” me. My daily experiences with EM have served as lessons in letting go: letting go of my health and my ideas of what it means to be a father. Being a dad is not about fitting any stereotypical image or doing “dad work.” Instead, fatherhood is about love. EM is teaching me new ways of loving my children, and I am sure they are discovering new ways of loving me. I am blessed to have such successful and supportive children who accept me as I am with my chronic illness. In this way, my chronic illness has given as much (or more) than it has taken away.

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As an erythromelalgia sufferer do you present some type of sweat impairment? #Erythromelalgia #emawarriors #Sweating #hyperidrosis #anhidrosis

Either hyperhidrosis or anhidrosis or a strange sweat pattern for different parts of body!

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Thankful for The Mighty

I'm extremely thankful for everyone who shares on The Mighty. I know it can feel scary to post something about your illness for the world to see. Your courage inspires me. And I always learn something even if it isn't directly related to my #ChronicIllness. Thank you for helping me walk this path especially on days I can't walk. #Erythromelalgia #RareDisease #Gratitude

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They just don’t get it #Erythromelalgia #ChronicPain

I’ve had erythromelalgia for four years now. All my friends, family, and coworkers know I have it. They all know my feet are on fire from the time I get up in the morning, until I close my eyes at night. Now, some days are better than others but they just don’t understand. My life has changed drastically. I’m not as active as I used to be. I still take care of myself, my house, and my yard, but it hurts. My dad said the other day he wanted to get me a pair of cowgirl boots, I said no it’d be too painful but thank you. He said why would it be painful? I had to remind him of my disease. And he says oh duh, I forgot. You just handle it, and carry yourself so well. That has been the nicest thing anyone has said to me about it in the last four years. On the outside, I seem fine. On the inside, I’m crying and wanting to curl up into a ball and just give the fuck up. This disease just sucks. I don’t go out dancing like I used to. I don’t go on spontaneous adventures. I don’t go hiking. And one of the things I hate most is when people invite me to go do something and I say no because I’m just flaring too bad, they try to talk me into going. Did you not here me? I said no. No means no. I am not your toddler who you have to convince to put pants on. I’m a grown woman. I realize I’m not the adventurous, carefree, extrovert I used to be. I have to be cautious now. I have to take breaks all the time and put my feet up. Or put some cream on them. I just want these people to understand that nobody realizes this more than me. I want them to understand the changes in my life have taken a toll on me. I could tell them. Will they listen? Probably not. I would give anything to not have this, to not be in pain 24/7. I don’t remember what it’s like to not be in pain. And I have to live the rest of my life like this. It’s so frustrating to have to explain to these people over and over. If they could walk a mile, hell even half a mile in my shoes, they would get it.

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