Autoimmune Autonomic Ganglionopathy

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Autoimmune Autonomic Ganglionopathy
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    Community Voices

    I’m new here!

    Hi, my name is stormydamsel. I’m a single mom fighting severe autoimmune issues while trying to still work and care for my daughter. Looking for a supportive network of people to connect with.

    #MightyTogether #Dysautonomia #AutoimmuneAutonomicGanglionopathy

    7 people are talking about this
    Community Voices

    Journey

    It seems like everyone is always talking about how life is a journey. That we should enjoy they ride. Well I can’t even enjoy an ice cream cone without by jaw aching from weakness. How do they except me to be happy, optimistic and talkative all the time when I cannot even smile without pain. Let alone sit for hours listening to someone’s else’s problem. I CANT DO ANYTHING RIGHT NOW!

    In reality, I know that this is just a rough patch. That I am going though a flare and this too shall pass. But then I feel I should be able to go through this part of my journey without expectations of “normal” people. These people that I know love me, but don’t get it.

    Right now, this flare is lasting longer than 3 months. My family is waiting, not so patiently anymore, for me to move on from this. To “pick myself up and move forward” because you cannot wallow forever. I don’t want to wallow forever. I want to grieve the part of my journey that my condition is taking from me. Birthdays, Anniversary’s and much more that I am in able to enjoy due to the looming cloud that is Autoimmune Autonomic Ganglionopathy.

    My journey will continue and I will be stronger when this’s rough patch is done. I just wish it would finish soon.

    Community Voices
    Community Voices

    Journey

    It seems like everyone is always talking about how life is a journey. That we should enjoy they ride.

    Well I can’t even enjoy an ice cream cone without by jaw aching from weakness. How do they except me to be happy, optimistic and talkative all the time when I cannot even smile without pain. Let alone sit for hours listening to someone’s else’s problem. I CANT DO ANYTHING RIGHT NOW!

    In reality, I know that this is just a rough patch. That I am going though a flare and this too shall pass. But then I feel I should be able to go through this part of my journey without expectations of “normal” people. These people that I know love me, but don’t get it.

    Right now, this flare is lasting longer than 3 months. My family is waiting, not so patiently anymore, for me to move on from this. To “pick myself up and move forward” because you cannot wallow forever. I don’t want to wallow forever. I want to grieve the part of my journey that my condition is taking from me. Birthdays, Anniversary’s and much more that I am in able to enjoy due to the looming cloud that is Autoimmune Autonomic Ganglionopathy.

    My journey will continue and I will be stronger when this’s rough patch is done. I just wish it would finish soon.

    Community Voices

    How do you all get the understanding across that some days are better than others? Some days I run out of spoons early.

    My wife is very loving and understanding, most of the time. Some days I get up and can help quite a bit, other days it’s exhausting just to get out of bed. I have shared the spoon theory, but it seems some days she still just doesn’t understand why I don’t want to do anything. I used to be so active, and it’s a big change for both of us. #LivingWithPOTS #POTS #PosturalOrthostaticTachycardiaSyndrome #ChronicObstructivePulmonaryDisease #AutoimmuneAutonomicGanglionopathy

    9 people are talking about this
    Laura Keating

    Target Employee Helps Mother With Chronic Invisible Illness

    If I were you, I would have assumptions about my daughter and me, and they wouldn’t be the nicest judgments. You see us walk into Target hand in hand, with my daughter enjoying a McDonald’s smoothie. You know where we are heading — aisle F14 — straight to the “girl” toys. And you know my daughter will be walking out of the aisle with a toy or two. You see us at the self-checkout. You see that we are always buying a silly “laugh-out-loud” doll or other small toy. You watch us as my daughter wants to do the scanning and paying all by herself. We make the machine freeze up. We ring up too many things, or sometimes not everything. You even smile when she uses the gun to swipe her gift cards. You notice us sit down in the Starbucks after our purchase while my daughter quickly opens her new surprise toy, curiously trying to figure out which one she got in the set. And the whole time, you are smiling — looking us in the eye, making sure our lane is ready for us, giving us a coin to scratch off the passcode on the back of the gift card, and even right there to fix the register when things ring up the wrong price. You make my day, my week, and my month. And you have no idea. You see, what you don’t know is that I am really sick. I have autoimmune autonomic ganglionopathy, which has caused my digestive system to be paralyzed, and makes me feel like I have the stomach flu everyday. I don’t get out of bed most days. I don’t drive very often because I get sick. I can’t take care of my preschool daughter because I am sick. So, when you see us at Target, all smiles, spoiling my kid rotten, it’s because your store is less than one mile from my house. And so is McDonald’s. And on days that I don’t want to pull the covers over my head and give in to this awful disease, I excitedly and proudly take my daughter the only places I physically can. And then, she excitedly ventures off to grandma’s house because I’m too sick to even take care of myself. And you have become part of our story. We look for you each time we are there. My daughter talks about you to her big sister. She tells her that our “Target friend” was working today, or how he let us use his coin. She even brought her grandpa with us one day to see you. So while you probably have no idea, you are a giant light of positivity and joy for my daughter and me. I actually look forward to your kind smile and the cute little head nod you give us each time you see us. We won’t be seeing you for a while because I am getting a bone marrow transplant. But, please don’t forget about us. And please don’t forget that you helped create a happy memory and tradition for my daughter and me.

    Laura Keating

    How a Text From My Mom Showed Me I Can Be a Great Mom While Sick

    Since I was old enough to answer, if someone asked me what I wanted to be when I grew up, I always answered, without hesitation, “A mom.” It was something I knew I wanted my whole life. As a child, I liked playing house, and always had a baby with me. When college came around, I wasn’t sure what I wanted to study since “mom” wasn’t one of the majors I could choose.  After many years in college, I finally realized that being a teacher was the next best thing to being a mom. I could get paid to spend my whole day with kids? Fast-forward to three years ago, and my life was exactly everything I could have hoped for. I was happily married with two daughters, ages 1 and 3, and I was an early childhood special education teacher. I was getting paid to play with 3, 4, and 5-year-olds all day, and it was fun. Now don’t get me wrong.  My life wasn’t perfect. I was sleep deprived. I can’t remember the last time I’d worn makeup. My husband and I would pick fights with each other over nothing. My house was a mess. And, I often woke up to find a Cheerio glued to some random part of my body. But, I had everything I wanted. And I truly was happy. Then, in an instant, that life was over. Done. Gone. A distant memory. A fairytale in a book I read somewhere. My new life began — a life battling chronic illness. While eating lunch one day with my coworkers, I became very ill. What I didn’t know had happened was that my entire digestive system shut down. It became totally paralyzed. I was diagnosed with gastroparesis and chronic intestinal pseudo obstruction. I became TPN dependent almost immediately and have been unable to eat much of anything since. After two years of traveling the country seeing doctors, the Mayo Clinic discovered that I have a rare autoimmune disease called autoimmune autonomic ganglionopathy. While I was struggling with this illness that caused the flu every day of my life, I was struggling more with the mental part of my disease. Suddenly, I went from a cheery, fun, silly mom to a bedridden lady with all the blinds closed, on medications, sleeping through HGTV reruns. My dream of being a mom had come true, but not at all like I had hoped. I wasn’t the mom at all of the school functions, cheering my kids on at soccer games, transporting the neighborhood kids to the park. I was the mom who practiced bedside parenting. Bedside parenting? What’s that you ask? That’s my version of trying to teach my kids about kindness, love, sharing, telling the truth, reading, fashion, and life in general all from the (un)comforts of my bed. Let me tell you. I’m not very good at it, and it’s not easy. I have been sick for three years, and being an early childhood educator, I know how important the development of children is during the early childhood years. Am I ruining my kids? Are they going to be failures because they didn’t have a mom who could show them what a real mom is like? Recently, I saw myself slowly spinning into a downward spiral. I was falling into the dark hole of depression that I have gotten to know pretty well in these last three years. So, I texted my mom. I told her I was falling apart. I told her I was afraid for my kids. I told her I couldn’t handle the guilt of knowing that my husband has to be the mom and dad, the husband and wife. I told her I was lost. And I told her I was going to fall asleep and forget about it all until tomorrow. Instantly, I received this text back: Talk to you tomorrow. I love your strength, your courage, your spirit, and the intense love you have for your husband and your girls and all of us. You are an amazing young woman. I will always be proud to be your mom! Rest well, my sweet girl. And like that, my heart and my head were calm. Because I just needed my mom. And I realized that I will never be too old to need my mom. And then I realized that I wanted to be a mom with such ferocity because of my mom; not because she was at all of my class parties, or driving my friends around town. It was because of how she loves me. It was because she knows just what to say when I’m feeling broken. It’s because her love for me is like no other, and I can feel that. And that’s when I realized bedside parenting is not as bad as I think. Yes, I miss out on lots of activities, but when my girls come home from those activities, jump into my bed and smother me with hugs and kisses as they excitedly tell me all about their adventures, I know that we share a love that can’t be squashed by chronic illness. To all of you moms out there struggling: Please know that your children know no love like the love of a mother. You are doing a good job. Keep fighting. Keep trying. You are an amazing woman. You have strength, courage, and spirit. Believe me. My mom is always right. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Ableimages

    Tori Anderson

    How I'm Content in a World of Daily Pain and Life-Limiting Symptoms

    I have this thing. The doctors call it a disease. My family calls it a devastation. I call it a storm. My life has never been a calm blue sea; it’s always been a storm. Here’s the thing about storms — they’re haunting and wild and loud and dark and unpredictable, just like disease. But I love them. Maybe this has something to do with a childhood spent in tornado alley. Anytime I saw clouds, I ran straight to the window with the hope that when the skies would part, the air would be fresher, the sky would be bluer and the world would become still, if only for a moment. Dark skies, wild winds, the unknown… it’s all so frightening and exciting. Most people are terrified of thunder and they despise the rain; I welcome both. To me, it’s a new beginning. I guess that’s why the diagnosis has never really been hard to accept. Autoimmune autonomic ganglionopathy (AAG) is a perpetual storm. The clouds show up with little warning, and the flare ensues as a nightmare to all who view it from the outside. True, I’d die a million deaths for one day outside of the haze, but my secret is, I actually like this hurricane. It’s hard to explain. People ask how I can be content in a world of daily pain and life-limiting symptoms. They get overwhelmed when they see me drowning in my situation. But I’m not drowning. I’m exploring the ocean floor with clear goggles. Because like AAG, the ocean floor is uncharted and undiscovered territory. It’s the easiest thing in the world to be happy under the rays of sunshine.  You’ll get wet, you”ll get muddy, but as they say, life is not about waiting for the storm to pass. It always seems to me that when it rains, it pours. But it’s taught me how to swim. The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Tori Anderson

    Hey, Autoimmune Disease, Still Think I'm an Easy Target?

    Dear Autoimmune Autonomic Ganglionopathy (AAG), I’d like to know what you were thinking when you chose me. Did you look at my small 15-year-old frame and decide I’d be an easy opponent? Did you think you would breeze through this war and come out the victor? I’m sure you did. Five years later, are you still feeling confident? Because I am. You completely underestimated the fight in me. You’ve stolen my ability to eat, drink, go to the bathroom, see completely, move freely, work, get an education and even sleep, but you haven’t stolen my ability to fight. You haven’t broken my spirit. AAG, you’re gonna have to try a lot harder if you want to beat me. You’ve taken so much away from me, but you unknowingly gave me so much more. My fight, resilience, bravery, happiness and courage is more bountiful than those who are twice my age. AAG, you’re a monster, you don’t fight fair, but I’m giving you the option to bow out now. Consider it carefully because you’re not going to beat me. I’m way too tough for you. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .