Things no one tells you when you are diagnosed with a motility Disorder! Your infusion company representative, who you speak to on a weekly to bi-weekly basis will become like your a member of your family! Because if you are a survivor of your motility disorder, as I have been? You will be on the phone with them for years! Through all the bumps and smooth times! Through the changes in insurance companies! Through everything! Right now she happens to be walking me through orders which we’ve never seen before! But I have just been discharged out of the hospital after 21 days and the orders needed to be refreshed! So, she helped me through a meltdown! See if I don’t have the right protocol I can’t keep anything down – I have been doing this since 1999 and managing to hang in there! 

The next thing you are not told is how you possibly will need to be near a bathroom at all times! No exaggeration AT ALL TIMES! Car trips will be torture! You will become grandma like ( including ordering the depends)in your 40 – 50 ‘s but here is how I decided to look at all this! I am still here right? I have survived long past expectations! Done better than expected! 

But here is the next thing you are not told about motility disorders, smells will make your stomach erupt like a volcano! So much so you have a little bandana with agreeable scent on it to put over your nose to stop this situation! 

Then there are the migraines the non-stop relentless migraines! 

And this should have maybe been one of the first on the list, but I will tell you why it was not. It goes slowly, with a great difficulty the understanding that you cannot eat like everyone else. It seems like a given. So simple! But it is not, it is by inches and degrees that this reality sits in to your conscious and subconscious. 

Finally, I want to add something I have come to understand. I have heard many motility disorder patients ask “why don’t they tell us what is coming next- so we could be prepared” and I myself have wondered what am I going to deal with next at moments, but for the most part I just deal from day-to-day. I have come to conclude that we are as different as our DNA. While you will hear threads of the same story you can never say for sure if this or that will happen! We are all different! If you feel you have a motility disorder you need a motility specialist! And we need more of them! At the beginning of my journey in 1999? I did not even know what a motility specialist was! Yes there are so many things which come “next” after you hear the words you have a motility disorder… No matter what type it is, gastroparesis, chronic intestinal pseudo-obstruction syndrome, mitochondrial malabsorption, colon inertia in my case all of these. God Bless you on whatever your next is today! 

Leave a Reply