August 15, 2021

My Frightening Reality

 


Blessed Sunday to you family and friends. It doesn't happen often but today it has. Everyone once in a while the reality that is my life comes front and center and this morning, it's staring me straight in the eyes. 

Incase you don't know I have a swallowing condition for the last eighteen years. I am unable to swallow most solid foods and I also have a hard time with liquids as well. Each doctor seems to have a theory but no one ever seems to be able to nail it completely. We go from Achlasia, to Dysphasia, to a motility disorder to GERD (meds dont make it better) etc.

This morning I was looking online and it seems there has been a study done in Belgium, the first of it's kind and these scientists now believe that Achlasia is autoimmune. The nerve cells in the esophagus are attacked by the immune system and die thus the lower esophageal sphincter is unable to open and close as it should causing food to back up into the esophagus. So what does this all mean? It means people with this condition have a very high risk of choking to death. I wish I could put it a nicer way but that's the reality of it. That's my reality every day. 

For the last year I have been telling myself, "you need to stop eating all the sugar, you need to stop eating all the sugar, this sugar is killing you, this sugar is going to kill you".  You see, for me, chocolate goes down well because it melts in the mouth. Ice pops, ice cream do the same. That's pretty much what I live on. Lots and lots of sugar..

I also have food allergies and there are foods like potatoes that not only do I have a VERY hard time trying to swallow but they give me horrible, horrible migraines. I have been making a vegetable juice with kale, spinach and an apple but even that. If I drink a big glass of it at one sitting I end up with an incredibly painful migraine.

I am feeling very overwhelmed and honestly at this point, I feel like and I know I need to do something but I don't know where to turn anymore. The consistency of foods pureed need to be just right for me and trial and error is not only dangerous but if I can't swallow it then my throat is so twisted for the rest of the day that I get barely any food intake at all.

People like me, a lot of times, more than I even want to think about end up on feeding tubes and that scares me. I don't want to end up on a feeding tube, I don't want to choke to death and I don't want to die from all this sugar intake but, I don't know what else to do nor who to go to anymore. It's been eighteen years and no doctor seems to be much help nor have any answers for me.

This is my reality, yesterday, today and....... .I guess for the future or until God decides to take me to my heavenly mansion.



9 comments:

  1. Oh, Robyn,

    We've not met, but I drifted in from Kathy's this morning, and I'm so dismayed and sorry that you have to live with such tricky, painful times. Thoughts and prayers from the Heartland for soothing days and sweet sleep and the ease and comfort you're longing for and deserve as you keep trying to find a solution. I know it's SO alarming and scary, and your brave spirit just shines through your words. rachel

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  2. I would try to contact the people in Belgium to see if maybe they could put a little light on your situation. Are there any support groups for other folks with this same problem? I looked it up and Facebook has a group with 7190 members. (Achalasia Support Group) There were quite a few groups. Sometimes I eat lots and lots of popsicles. These last two days, I ate the whole box. And if I were closer, I would be having Dairy Queen ice cream everyday. I do hope you can find some helpful ideas. My prayers are with you, hugs, Edna B.

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  3. That sounds so awful and scary. Can you see a nutritionist that might be able to help figure out some healthier foods you could manage to get down?

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  4. Robyn. I don't know what to say. You have a challenge for sure. I'm so sorry this is happening to you. So very sorry I cannot be more helpful. I pray something will come to surface to help you.

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  5. I fear choking to death, too. I have had trouble swallowing for about five years. It is horrible when it happens. Hopefully, you can find some help. Doctors need to do tests, but I am afraid of covid.

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  6. I am so sorry. I hope you can get some answers soon.
    My son has asthma and was diagnosed with eosinophilic esophagitis since he felt like he was choking sometimes. Turns out he has food allergies. Once he eliminated the foods, he has done better. Just wondering if the dr checked you for EOE?

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  7. I had a stroke several years ago and could not swallow. My throat was paralyzed. I was on a feeding tube that went directly into my stomach. A speech therapist worked with me on sounds and had me apply ice to my throat several times a day. My diet consisted solely of a liquid that went through the tube. After 6 weeks I was able to slowly start eating again. At first after each bite or sip I had to put my chin up and swallow. Gradually I learned to eat again. I think you need professional help, but it seems you can't find just what you need.

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  8. I just thought of this--I hear people say they have their throat stretched so they can swallow better. I'm wondering if you've ever had this procedure.

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  9. I am catching up with the blogs I read and have just now read this. I feel so badly for you, Robyn. And yet I can empathize with you to a point because I have so many swallowing problems. No one can seem to find the answer for me. I will be praying for you that there is a solution found for your problem.

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Please leave your comments, I love hearing from you! :)
~Robyn~ XO