Mundane dangers

I recently went out to a restaurant with my family.  I loaded up on meds before we went.  As we were sitting at the table, a thunderstorm rolled in.  I watched with dismay as the street before me became a water way.  I wondered how I was going to get to the car without getting my PICC dressing soaked, causing it to come away from my line and exposing me to a central line infection.  I ended up asking the waitress for a trash bag and wrapped my arm in it.  I ran to the car and was terrified until I got home and could pat it dry.

Today I found out that the IV medication I paid $200 to overnight to Seattle was not delivered and is not refrigerated, meaning that it will almost certainly be useless.  My other option is to pack all of these supplies in my luggage, but it would be too heavy for me to carry.  Not having IV fluids guarantees a bowel obstruction so going without is not an option.  I have talked to eight different people about this and needed medication when I started reacting from getting upset. 

I hate how much I need everything to work perfectly to manage my disease.  It is by the far the most difficult part for me.  I hate that I need people to be completely accommodating.  I hate that I also need nature to be forgiving.   I hate that my life has no flexibility and when I protect my routine, people think I am unyielding for the sake of it.  I can’t control these things, but they can control me.

Day to day life with mast cell disease requires elaborate scheming to achieve even basic things.  Routines are crucial to not needing epinephrine.  Making plans ahead of time keeps us safe, but only if nothing changes.  When things do change and we get upset and people act like we’re crazy, it further reinforces how frustrating this disease is. 

I don’t want to be this way.

I don’t want to be the type of person who cries when something goes wrong.

I don’t want to need other people to keep me safe. 

I don't want to be demanding and unreasonable.

Some days, I am just so tired of this world, with all its mundane dangers.