Achalasia

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    I'm a Christian who fights daily pain. I have suicidal ideation at times and I use medical marijuana for pain relief of both mental and physical pain. I tried pharmaceuticals for 20 + years, for my chronic migraines before turning mmj.

    I stopped going to church because of spiritual abuse. I know I could go to a different church, but I feel so much anxiety just thinking about it that I've chosen to listen my body and do what makes it feel safe and well. I watch sermons on you tube and feel like I get more spiritual fed than when I try to be in a room full of people.

    But God says to gather together and I feel conflicted about this.
    I'm sick so does that give me a pass......
    I think I could handle a womens bible study in person. But even that is very hard for me physically. I have chemical sensitivities and I'm hearing impaired. If someone is wearing to much cologne and sit near me, I'll get a migraine. The lights are also a migraine trigger. I rarely leave my house and do most of my shopping online.

    I'm allergic to most pharmaceuticals I've tried. I get all the bad side effects and I'm not exaggerating.

    I never wanted to be a pothead, but it's been keeping my achalasia in remission. Achalasia is a rare esophagus disease.

    I've definitely think that the stigma of mmj is a part of my anxiety and I'm probably my own worse critic. But I really don't know what else to do.

    I feel like I'm letting everyone down, even God.

    19 reactions 4 comments
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    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

    3 reactions 5 comments
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    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 comments
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    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

    Post

    I'm new here!

    Hi, my name is FrogsInMyPocket. I'm worried about my family member’s rare disease diagnosis Achalasia that has progressed to include gastroparesis.

    #MightyTogether #ADHD #Depression #Anxiety

    2 comments
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    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 comments
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    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 comments
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    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 comments
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    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 comments