Achalasia

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I’m new here!

Hi, my name is aliveandwell. I'm here because I just heard about this app and am curious to connect with others with Achalasia!

#MightyTogether #Achalasia

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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

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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

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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

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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.

corona-virus-covid-19

Coronavirus disease 2019, also known as COVID-19, changed our world forever. From the mental health toll of social distancing, stress caused by the economic impact, and grief over the loss of life, it affected us all.
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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

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