Fearing the Unknown

A diagnosis of Gastroparesis is scary.   Perhaps not initially, because most people diagnosed with it have no idea what it means when they get the news.      Often, the real fear doesn't start to hit you until you go home, look on the Internet to see what it is all about.    You search around the Internet, finding stories from other sufferers - most of which are not pleasant to read, leading you to even more fear and confusion.  "Wait a minute!  My doctor didn't tell me I may have times when I go weeks without even wanting to get out of bed, or even eat a small meal!  What is going on?"

Colleen has lived that nightmare for a long time - and continues to do so, even after all of her tests did not show she had full-blown Gastroparesis, if she has it at all.    As I stated in another post, a negative test doesn't mean you are personally going to get positive results, health wise.    In the end, you are still sick - and now you need to search for new answers to all of the questions you have been asking for years.

That is where fearing the unknown comes in - I would never say to a Gastroparesis patient "Be thankful you have a diagnosis!", because I know what that diagnosis means - years of trial and error, using experimental devices and drugs that aren't even designed for your condition, hoping that some combination will at least help you try to live a normal life.  However, by the same token, Colleen is now at the point where she is back at Square 1 - it isn't Gastroparesis (yay!), but we don't really know what it is (boo!).   We are going down the path of antibiotics at the moment to see if they help her, but the fear there is that they have no effect whatsoever on her condition.   We are a long way from that point, but let us face the facts:  As humans, we have this ability to think far into the future, even when we perhaps shouldn't.   When a doctor gives you a long-term treatment plan, you are going to think about what may happen if the long-term plan doesn't work.  There is nothing you can really do to shut that part of your brain off.

Colleen has been feeling sicker the last few days - again, just driving home the point that "good news" on a test doesn't mean you will feel better.   It just leads to another Dead End in a long, windy network of roads.  Sometimes, Dead Ends are good - especially in the long run.  The more roads you take off the map, the more possibilities that go away in terms of what you may be dealing with.  However, in the short run, it can be trying - and discouraging.

As a loved one, you are going to deal with these ups and downs as well - you are going to be encouraged some days and discouraged on others.  You are going to see your loved one perhaps turning a corner, only to get hit by a giant truck once they do.    And, other than give your support and help them in any way possible, you will have that helpless feeling that there is nothing you can really do about it other than hope that the next time your loved one turns that corner, there is no truck flying down the street.