This is the day that made me think I needed a blog.  It was a typical day that should have been great, but because I have DBA it sucked.  This is when I thought, “I wish people could understand that there is something really wrong with me.”  I have Diamond Blackfan Anemia (DBA), a very rare genetic disorder in which my body does not make any red blood cells.  It sounds simple, and yet it is very complicated.  I don’t look like anything is wrong with me, but I certainly feel it, and often.

So here I am in Ardmore, Oklahoma.  Where?  Why?  Well, I am in Ardmore Oklahoma at Turner Falls on a hiking trail.  Even though my parents have lived with their daughter having DBA for 46 years they somehow thought going hiking in August when it’s 100 degrees outside would be fine.  Although I KNEW inside that I shouldn’t do it I thought, “Well, I don’t want to be a cop out so I’ll try it.”  I really thought if I had plenty of shade and of course drank water I would be okay.  We were only going two miles.  I’ve hiked more than two miles before, but never in the Summer.  The heat just does something to me.

My nine year old niece was there and I didn’t want to disappoint her.  So I sucked it up and got on the trail.  I did well at first.  It wasn’t too hot yet and it was mostly downhill.  But somewhere in the middle of it, my heart began racing like crazy.  I had to stop more frequently.  I was always looking for a shady spot.  My breathing was getting out of control and my face was beet red.  I kept drinking water and taking deep breaths.   I was now at the point that I had to sit on the trail in order to catch my breath.  It was getting hotter and it seemed that the shady spots were becoming less frequent.  The uphill climbs were not steep by any means, but for me they were almost impossible.  I became worried.  Those with me became worried.  So it was decided a couple of people would go ahead and find help.  Looking back I feel embarrassed admitting I might need a rescue, but I certainly didn’t care in the moment.  The exhaustion became so bad that I almost lied down on the dirt trail.  My dad stayed with me and encouraged me to take a few more steps every time my heart got to a calm level.  I agreed.  He would help me up and we would slowly walk from one shady spot to the next.  I would drink water, catch my breath (all whilst sitting), then get back up and take a few more steps.

Before long, I found my mom sitting on a picnic bench along the side of a paved road.  The others had gone on ahead and were getting help.  “If I can just make it to that picnic bench with my mom, then help will be here soon. I’m going to be OKAY!!!!”  After a few minutes of waiting on the bench my friends arrived with the car.  I got in the front seat for the AC to be right on my face.  Within a couple of minutes the park police rode up on their ATV’s, looks of concern on their faces.  Everyone pointed out that I was the one in trouble but had made it to the car and was okay.  The park police gave me a fresh cold bottle of water and talked to me long enough to ascertain I was fine.  I was relieved to be okay, but felt so foolish that I had trouble on a two mile hike.

This is a dilemma I am faced with often.  The opportunity to go somewhere or do something simple but that I know will be difficult or challenging for me given my health circumstances.  It is difficult for others to understand because it isn’t always apparent something is wrong with me.  DBA isn’t something you can see, but it is definitely real.  There are times that trail would have been no problem for me.  If it was cool outside or I wasn’t anemic then I would have done it and more.  But on that day, at that time, all the warning signs were there and I didn’t pay attention to them because I didn’t want to disappoint my family or have them think I was just trying to get out of something.  You would think that after forty six years this wouldn’t be a problem, but it still is.

Oh, and did I mention that during all this I knew I had a Urinary Track Infection?  So after I finished my hike from hell where I almost had to be rescued by park police I spent the rest of the afternoon in a doc in the box in Ardmore, Oklahoma.  It’s always something.

P.S.  I would like to add that I did indeed finish the two mile trail.  I thought I was being picked up at a half way point, but I did indeed finish the trial myself.