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    Community Voices

    First Post Here... Hey Y'all

    Well, I don't even know where to begin. It has become apparent in the last 18 months that my husband of nearly 24 years is a narcissist. He's always been super judgmental (and acknowledges this fact, but has never tried to change it).

    Well, we are definitely in a rocky place. Yes, I have a hand in it -- but, so does he. It takes 2 to tango, ya know.

    Anyways, over the last year+ the home environment has gotten fairly hostile. When he gets home from work, I've been informed I'm "not supposed to speak to him until he's ready"... but he never indicated when that was. So I did set a boundary there... I told him he can't come sit down next to me on the sofa until "he's ready" because I'll inevitably talk to him. He expects me to just "know" when it's ok and not ok to talk to him (based on his mood - which is ever changing).

    Even asking a simple question is met with extreme defensiveness. I was attempting to explain something medical from my doc to him, and he misunderstood. When I said his understanding was incorrect, he yelled "that's what you JUST said"... even though it wasn't. So I simply started over and said everything again. He doesn't listen to me. In fact, we had a HUGE discussion/argument about MY food preferences regarding pickled red onions (I like them, he insisted I didn't). Not 3 days later, he didn't remember the conversation. (He "never remembers" what he's said.)

    He was going to therapy, but hasn't gone in at least 5 weeks. He was the one who said he wanted marriage counseling, but is now refusing. What do I do??

    #narcissisthusband #narcissistspousalabuse #Gaslighting #Depression #Anxiety #BPD #AvPD #ADHD #Fibromyalgia #DDD #chronicpainpatient #Gastroparesis #Achalasia #Stressedout

    4 people are talking about this
    Community Voices

    Food was a pleasure, now it’s a chore

    Just over six years ago I was diagnosed with dysphasia and what was suspected to be an Esophagogastric junction Outflow Obstruction. Sadly this progressed and worsened and I was eventually diagnosed and confirmed to have #Achalasia . Food, eating out, grilling out and picnics were a pleasure. Events that would brighten my day, week or month. But with the progression of the disease, the thought food and struggling to eat caused pain. All food was then ground up and put in the blender for swallowing. Dilations worked but were only temporary and that is when the #Depression really kicked in. This week I “celebrated” the 4 years anniversary of my heller myotomy. Over time th swallowing issues are back and now is the depression. I know it could be so much worse like others but things just hit me today and I needed to vent.

    My apologies. Have a blessed and positive day

    4 people are talking about this
    Community Voices

    Achalasia Still Stinks

    #Achalasia still stinks but I continue to battle. I will say it is better since surgery and the past six years have really challenged me but after my endoscopy yesterday there was conversation about another surgery to “tighten things up”.

    I remind myself that I am strong but what is the most depressing is when I look in the mirror. I am a skeleton of what I used to be. I lost so much muscle mass and weight I am just a shell of the soldier I’m once was. I don’t like mirrors but they are a necessary evil in life.

    I dare not tell them I am #depressed as their words at times seem hollow when consoling me. I am thankful iPod the love from my wife and family but #Achalasia stinks

    Community Voices
    Community Voices

    My journey if anyone reads this.

    Well it's been a 1 year and 2 months. Since my nissen fundoplication. It's been a long and rough road, since the first surgeon screwed up on me with my nissen fundoplication. The sad part is that she did not give a shit about me. I went back to her two times after the fact and feel like she didn tlisten to me. So she referred me to a different Dr at a different hospital to do a upper endoscopy. He did that 3 times the last time they told me, when I was barely awake that they couldn't get it down and I was yelling and screaming in the procedure room. He told my parents that they should take me down to University of Michigan. We did that and they put a feeding tube in me for 4 days and I went home after they put it in that Sunday. The next Friday I went back and told them you have to take this out of me or I'll do it myself. I also told them I'm not leaving until I was fixed. Well Dr that I had down there redid some of it. Now I have a toupet 270. That was in August 2021, during a of this I couldn't barely keep any water down. Food was a no go. That worked for maybe a week at the beginning of October I had to go back down because it got so bad that I thought I was dying. Come to find out I also had COVID during all of this. I have 3 medical teams and a bunch of doctors at u Of M that are confused about all of this. I have been diagnosed with nissen fundoplication dysmobilty and Achalasia. There have been only 60 cases since 1947. I still can't keep bread or pizza or subs down. I was 130 last year and lost 50 pounds at one point and was down to 80 pounds. I now have gained about 20 back and recently referred myself to Cleveland clinic to one of the doctors that is high up there in Cleveland, especially with everything I have going on. I'm hoping I can finally find some answers I have been working towards.

    4 people are talking about this
    Community Voices

    My dear husband has been I’ll for sometime and has lost about 45 pounds. Initially , the doctor thought it must be cancer. All cancer has been ruled out. We have a test to do that will hopefully confirm that he has a rare disease, Achalasia. Damaged nerves in the esophagus cause paralysis in the esophagus as well as the valve between the esophagus and stomach not to open. This food doesn’t get into the stomach consistently causing weight loss. Surgery and medication can alleviate the problem by releasing or relaxing the LES I would ask for your prayers as we navigate an unfamiliar road. It would be wonderful if he could eat again. This is an incurable disease that is fatal without treatment.
    #Fibro #polymyalgia rheumatica #Asthma #Migraines #Arthritis #macular degeneration

    7 people are talking about this
    Community Voices

    Tired of the pain of chronic illness

    Today is just one of those days. I have had fibromyalgia for almost 30 years. Chronic migraines for over 10 years. A brain tumor for almost 4 years. Trigeminal neuralgia for over 3 years, achalasia for 2 years, IBS for 20 years more surgeries and hospitalizations than I can count and now 6 months ago was diagnosed with scleroderma affecting my internal organs and joints, already stage 3 kidney disease and heart murmur found- they suspect I’ve had it for years but due to my other conditions it was missed. Despite this laundry list of health issues I’m actually a very happy positive person. I have a strong faith and found a way to deal with things through the years and adjust my life and still care for my family, homeschool 2 kids and rarely miss events. Usually at sacrifice to myself physically, but my kids and family were worth it. I gave up things believing I could one day go back when I had the energy to focus on those things. Now I’m only getting worse and if I’m being totally honest my husband of 26 years has never been a great caretaker or empathetic and I’m tired Physically and emotionally. I ask when comes the difference between being positive and upbeat and then people just believing u r not suffering and completely dying of pain and lots of other symptoms. Everyone around me gets angry when I say I’m sad or show I’m hurting etc. today it’s just enough. I’m frustrated 🙄🤨 #Fibromyaliga #Scleroderma #chronic migraines #braintumors

    5 people are talking about this
    Misha Steiner

    What It's Like Going Out to Dinner With Achalasia

    The restaurant is crowded. The music plays just a notch too high. The server appears — a bright smile on her face. She’s ready to take your order. Everyone else is prepared, they were able to pick the meal that sounded the tastiest. But this isn’t how it works for you; you breath deep and try to gauge your luck. You must decide just how much pain you’re willing to risk tonight. You are starving. You’re always hungry. You order Sprite because sometimes the bubbles help, but when it’s brought out, you’re too afraid to take sip. What if it gets stuck? What if today it makes it worse? Everyone expects you to eat. If you don’t, they’ll give you looks and think something’s wrong. You give in, you order a pasta dish, the food should be soft — this should help. It comes with a salad, immediately you tell the server that you’ll need extra dressing. Extra dressing helps to ease the food down; you’ll need all the help you can get. The anxiety and dread leaves after the orders are taken. You forget the meal you’ll have to fight and join in with your friend’s laughter and the stories they share. The server seems to dance over the floor, rushing from one table to the next and you feel the pressure to hurry. The salad arrives along with the breadbasket. You stare at the bread until you give in and take a piece. You lather it with butter because sometimes it helps. This time it doesn’t. It feels as if it scratches your throat, clawing its way down. It’s hard to breath. You force a burp, hoping it might relieve the pressure. It doesn’t help. You chug some of your Sprite and for a moment the pain disappears, and you trick yourself into taking another bite. Fear sits heavy in your chest, you don’t want to throw up, you don’t want to eat at all. You’d rather be held up in your room with something nice and mushy that you could take your time to eat where no one could watch if things went wrong. The pain stays, it steals away your breath. You sit a little straighter, you shift and stir, pausing for moments between breaths. You take only a few bites of your salad. The dressing doesn’t help today. One more swallow of Sprite and the pain flees, maybe now you can eat. The entrée arrives, the food is steaming and it smells delicious. You start to eat, but after three bites in you have to stop. You try to breath, but as your body struggles to swallow, getting air you need isn’t easy. Your throat aches, your chest is burning and you start to sweat as you look for the nearest restroom. You rest your hand on your chest, trying to rid yourself of this pain and finish your meal. You struggle to breathe and your back begins to ache as you sit even straighter. You should stop eating, just stop. But what if this last bite will force everything to go down? You know from experience that this feeling can linger for hours. Your friends have finished their meals and they’re asking for boxes and the check. But you aren’t ready and they just want to leave. Your throat starts to prickle as the food tries to make its way back up. If you get into a car, it’ll just get worse. You struggle to sit straighter. The world becomes too loud, too quick and too hot. Your eyes sting from the struggle of breathing. Suddenly, you know you have to, there is no way around it. You stand. The food pushes against the walls of your esophagus — it screams to be let out. You excuse yourself, hardly able to speak for fear your dinner might come up with your words. A waitress sees you stand and points to the bathroom. You slam into a stall, locking the door behind you. You drop to the floor and pull back your hair. You cough and cough, your breath is lost, and the pain grows even worse. You bend a little and it slimes out. It burns as it escapes, it comes slowly and strangles you. Chunks come up of undigested pasta coated in clear slime. Everything you had just tried to eat forces its way out. You spit what is left in your mouth, hoping that’s the end. You lean against the stall wall and try to forget the pain. You count your breaths and inhale deep. It’s impossible to forget. It burns again and fights its way out. Your chest tightens. This time it doesn’t give you a choice. You fall to your knees, your hair sticking to your mouth and your face starts to burn as more undigested swallows make their escape. Soon all that it left is spit, a sticky saliva that demands freedom. You force that last bit out as your esophagus spasms. You choke. The pressure lessens, it’s still uncomfortable, but the fight is gone. For a moment, while you can hear the toilets flushing, the whirl of the sinks turning on, doors opening and closing, you wonder if that’s it — if that is all for today. The last bit that’s stuck, you can’t make it come up, so you leave your stall and step to the sinks. Your eyes are red, your makeup is smeared from the tears that sprung from the pain and pressure, and a closer look reveals that you burst some blood vessels under your eyes. You wash your hands while still the burning in your chest remains and you struggle to breath. At your table, everyone is ready to leave; their meals neatly packaged, and their checks signed in front of them. You see your plate, barely touched, you accept it as your defeat. You slide back into your seat and wish you could just sit for an hour, waiting for this feeling to pass. They don’t understand this. You should be able to fight it. It’s just a little pain, isn’t it? You would like to laugh. You rest your hand on your stomach, a little lightheaded. You have a headache and you are hungry. You are starving. Your stomach growls, reminding you that you’ve lost everything you had tried to feed it. Your hands shake and you’re exhausted. You take a quick sip of water. The waitress puts your leftovers in a box, you sign the check. You’ll sit in the car a while, you’ll let the feeling pass. That’s all you have to do, let this feeling pass. You can do that. The waitress smiles and offers her thanks to your group, you’re sliding your coat on when it comes back twice as strong. You toss your possessions onto the table and run to the bathroom as suddenly something is pushing on your chest from the inside, trying desperately to get out. The water you swallowed taunts you. It’s slow, repetitive and exhausting. You cough until nothing else comes up. Your hands tremble as you unlock the bathroom stall. Your chest burns, your head starts to pound and the pressure dispels. Perhaps, now, you are finally free. Your stomach churns, but nothing screams to be let out. You wash your hands and save your possessions from the abandoned table. You follow your friends to the parking lot. They don’t know what to say, they’re not sure what happened. You don’t say anything. You won’t say anything. It’s still too fresh, all the times you’ve been questioned. Every time someone told you to just not think about it, every time someone suggested it was all in your head. So, it’s easier to say nothing. You give your goodbyes quickly and get into your car. As you sit, you still feel it. One deep breath in, the pressure barks at you, it sits snuggly on your chest, slowly strangling you. The rumble of your engine is drowned out from the music. You turn down the music a notch or two and pull your car into reverse, leaving the restaurant behind. You feel it shoving its way back up. You drive faster. What else can come up at this point? The road jerks and it comes, it forces itself on you. You stop at the side of the road. You’re unable to grab anything as you eject yourself from the driver’s seat. It comes out, burning your throat as it escapes. There are no remnants of a meal, only saliva that falls and clings to your chin. You’re on your knees at the side of the road, cars zooming by, their headlights exposing your struggle for seconds at a time. All you want to do is cry as again your body fights to expel what’s stuck in your esophagus. When it calms, you struggle back to your car, searching the glovebox for tissues or old napkins to wipe away the evidence. You just sit for a moment, catching your breath. Your eyes are filled with water and there is another heave. You keep it down. As you start to back out, your tires squeal against the gravel. You driver faster. You can feel it coming back, you breathe quick and short breaths as you count the seconds to home. The door opens when a bang, you throw your keys onto the counter. You drop everything you have onto the floor before you claim the bathroom. It feels like your chest is about to explode. You fight as your body chokes you, but there is no point in fighting. There is no where else it can go. You give in. No food comes out, it’s just spit, even that wouldn’t go down. You spit. You don’t dare swallow anything else. You flush the toilet and lean against the counter. You can’t remember the last hour of your life. You don’t remember the conversations had or the jokes shared with your friends. You don’t even remember saying goodbye. You start to cry. You’ve lost. The cries turn loud, great sobs of frustration and anger about how you’ve been broken. Even then it still hurts. Your whole chest tightens. Your hands are shaking from this last disaster. With the sink on, you wash your face. Your skin burns from the water’s touch. It’s mostly gone, you can tell. You desperately want a drink of water, but what if it comes back? What is the water just makes it worse? You sit on your bed, leaning your back against the wall. You can’t slouch as the pressure rises. You struggle with your breath. If you move it gets worse. How long will it live there tonight? Another 15 minutes or will it stay the night and wake you up only to make you throw up once more? You put away your coat and change your clothes, you cover up all nice and warm. You turn on the TV to distract from this uncomfortable pressure building your chest. You eat and drink nothing, you don’t dare risk it. Slowly, still sitting up, you close your eyes and try to sleep. Time will help the pain to clear away, but you know that the next time you eat or drink this is exactly where you might end up again. You know that any meal or drink could lead you down the same path. You release an aged roar; it shakes the room. You pray that tomorrow you’ll be able to eat your meal.

    Community Voices

    Not disabled?!?

    How can a person with numerous mental and physical disabilities be denied social security again?!? I have not been able to work since 2017 because I spend all of my time going to doctor appointments. I don't eat because I can't swallow. My body hurts all the time from fibro and arthritis and who knows what. My anxiety keeps me awake, my depression makes me want to kill myself. I can go on and on, but you know what, I'm tired. I honestly don't care anymore. I hope you all have better luck, done with the fight #SocialSecurity #Anxiety #Depression #BipolarDisorder #Achalasia #Arthritis #Fibromyaliga #BrainAneurysm #Suicide

    26 people are talking about this
    Community Voices

    Does anyone have experience with the POEM procedure as a treatment for Achalasia?