Having one of those days…

Trying to keep myself from falling into the “feeling sorry for myself” mode.

I’ve been really struggling the last few days with the inconsistencies of these diseases.  Someone asked me if the pain was the hardest thing to deal with.  I told them the pain was nothing compared to the roller coaster of not knowing how I will feel the next day or even the next hour.  I crave consistency and routine; two things that are pretty nonexistent for me right now with EDS and POTS. 

Sometimes you need a wake up call.  Usually I try not to whine about the little things that get me down about EDS and POTS, but yesterday I failed at this. Big time.

It was 84 degrees and sunny yesterday.  In all other years I would have been ecstatic about this weather; especially on April 10th.  I would have broken out my Reef flip flops and capris, and spent as much time as I could outside reading, relaxing, and soaking up some rays.  I would have also probably have gone and gotten my first pedicure of the season. 

But not yesterday.  I whined and complained all day.  I even got on MY nerves after a while. 

Well, I do have to say that persistence does pay off.  I may have overreacted a lot bit, but not knowing to me is the WORST.  If I know I have something, then I can start to deal with it, but I do not do well with the waiting game.

I did not get a call yesterday and stressed, and cried, and prayed, and slept fitfully throughout the night.  I felt like I was back to the summer and the fall, waiting, and waiting for answers.  Thankfully, this morning I was called with the answer I was looking for.

Don’t doctor’s offices know that they are not supposed to tell a patient who happens to be the biggest worry wart on the planet that they have their results back for a pretty major test but they can’t come in for a results appointment until April 28th? In Indiana?

I usually take things in stride pretty well, but come on! 

I got a text from Allie a little while ago that said, “Where’s an update slacker?”  My response?  “You don’t want an update.  It’s been a rough few days.” 


Then I thought if I only blog when things are good, then I am not being totally real about all of this, am I?  And maybe being “real” will show other EDS’rs or POTSIES that they are allowed to be human too.

So I’ll get right to the point.