In America, though, there is another potential spanner in the works – Medical Insurance Companies...
“They would get one test back and it would be negative,” Melissa begins, “so they would have to schedule another test and get it approved through insurance. That took time and lots of patience.”
Patience that paid off. Finally receiving a correct diagnosis has made a difference, and she has gone from guinea pig to a patient receiving appropriate care. “Since I was diagnosed, there is much less 'let's just try this medicine and see if it helps'. My treatment also involved appropriate dietary changes, whereas before diagnosis it was all about the medication and the dietary changes I implemented actually made me worse.
After diagnosis, I also was able to go see a Gastroenterologist who specialized in
Gastroparesis and he offered cutting edge treatments like pyloric Botox injections.”
Pyloric Botox injections involve Botox being injected into the pyloric sphincter, the ring of muscle at the bottom end of your stomach that opens and close, so that it relaxes and allows food and fluid to leave the stomach – instead of sitting there decomposing before being vomited back up.
The first doctors she saw may have dragged their heels in terms of underperforming and getting to the root of Melissa’s problems, but she says there are at least five medical professionals she would recommend, one medic in particular – a
Dr Patrick Waring, a Gastroenterologist in Atlanta.
“I think in some ways, especially for those with severe
Dysmotilities, or for those with feeding tubes or TPN, friends and family start to treat you differently, and not in a good way.
They stop inviting you out to do things. They stop visiting you as often. They stop talking to you because they feel like you have enough to deal with. Friends and family, don't do those things!
Keep inviting us out. Will we have to say no sometimes? Yes, but keep inviting us out anyways because sometimes we will say yes!
Keep visiting. Keep telling us about your lives. Yeah, having a Digestive Disorder can be a burden, but that doesn't mean that we don't want to hear about your day or your problems. We may have new limitations, but that doesn't mean our personality or our spirit has changed. I still want to be that friend you complain about work to.
I can still come over and hang out at your house without having to eat. My energy level may not quite be the same, but there are still lots of things we can do together to have fun. Be the friend or family member you were before I was diagnosed.
Also, I think I would want people to
understand that although we have these conditions, they do not define us. Rather it is how we deal with our condition and the challenges that come with it that define us.
Problems don't define us. It's our ability to overcome them that does.”
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During her interview, Melissa also gave us some GP hacks, and you can read those and the others we were given by our interviewees in our feature