Tuesday this week was rare disease day!

I thought I would share a little bit about my own rare diseases and give you an update on my latest health news.

I have two diagnosed rare diseases, Ehlers Danlos Syndrome and Dysautonomia. They both impact my life every day, and I am still learning to manage them since I was diagnosed last year. These diseases cause joint and muscle pain, fatigue, racing heart, light headedness, weakness, fainting spells, and low blood pressure. Until now, I only had to increase my fluid and salt intake and attend physical therapy to manage these symptoms. I also have learned to pace myself and wear supportive braces sometimes to keep my joints in place.

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The past few months, though, I have had more and more problems with my digestion. I will eat normally for a few weeks, and then out of nowhere, I seem to come down with the stomach flu for a few days or weeks at a time. There’s never a fever, but I can’t eat much of anything due to pain and nausea. I have tried many different diets, which always ended with a flare of awful symptoms. I have had countless tests and procedures coming back as normal, and so far, my doctors and I just think that it is a complication of my dysautonomia.

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Dysautonomia means that my autonomic nervous system is malfunctioning. In a normal person, the autonomic nervous system controls things like blood pressure, temperature, heart rate, and digestion without any problems. Mine doesn’t do a very good job, especially with digestion. Some days, my digestive tract works just fine, but other days it acts very slowly, leading to a build up of food in my stomach. I feel full after two bites of a meal, but I am starving at the same time because my body still needs those nutrients. By the end of the day, all that food sitting around produces large amounts of gas and air, so my belly blows up like a balloon and causes lots of pain, nausea, and indigestion. My doctor tapped on it in his office, and he said it was a tympani tummy. It sounded like a drum! Haha.

I am sad that there doesn’t seem to be an easy fix, although I am hopeful that I can learn to manage this without IV nutrition or a feeding tube. I am currently working with a gastroenterologist, a neurologist, a dietician, a physical therapist, a mental health coach, and my primary doc to determine the next steps. I will still have lots more appointments and tests in the future, but for now, I am resting in the fact that I am safe and cared for and have time to relax.

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What does this mean for my blog?

To be completely honest, I’m not sure. My diet right now consists of protein shakes, hot cereal, purees, liquids, and no solid food. It’s hard to make recipes when my diet is so limited, so I will most likely not be sharing many for the time being. I am working hard to manage my condition in all aspects of my life since food doesn’t seem to make anything better.

I still want to post on my blog because I do really enjoy it. It takes my mind off of myself and my symptoms in the hopes of helping others. Until I can create recipes again, I want to start posting reviews of products, tips for managing chronic illness, and plenty of gluten free lifestyle suggestions. Any recipes that I do post will still be 100% gluten and dairy free, and now they will also be low-FODMAP and gastroparesis-friendly.

As soon as I can get back to posting regular new recipes, I will, but until then, bear with me!

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I hope you will find these new posts helpful, even if you are not as limited as I am. I hope to make a frequently asked questions post or video soon as well to really answer any questions anyone has about my illnesses.

Thank you so much for reading, and I hope you all had a great week! Please let me know if you have any questions, or if you want to suggest a topic of a future blog post. 🙂

If you want to learn more about my conditions, here are some very informative links. 🙂

ehlers-danlos.com/what-is-eds/

dysautonomiainternational.org

dysautonomiasupport.org

 

 

 

 

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