I Withdraw...

When I am not well, I withdraw.  I guess I never realized it, but my friend, Brenda, kept asking if I was ok.  I really wasn't physically ok, but I am so used to 'dog paddling' that I keep putting one foot in front of the other, doing whatever I had planned to do.  If I stayed home when I don't feel well, then I would never walk out my door.  If I rested in bed when I don't feel well, I would never get out of bed.  Honestly, I never feel well, so my way around that is keep on keepin' on.  I did that even when I was young.  Edith would find out I wasn't feeling well, and she would suggest just staying home.  I would respond with "I am not contagious and if I stayed home I would just keep thinking about how crappy I feel.  I would rather get out and enjoy my day."  I still feel that way.  

However, I try to not be withdrawn - but it is difficult.  When you struggle physically, it is so overwhelming; trying to figure out how to get to feeling better quickly, what caused me to tank all the sudden, how to get on top of it and let's just enjoy the moment/day/occasion. 

This is a new friend and we are still getting to know each other.  I guess that was what she was seeing... me withdrawing.  We had been riding bikes the day after my infusion - I should have known better, but I want to do what I want to do.  My infusion yesterday caused me to have major nausea, but my headache was only mild.  While we were out this morning taking our quilts to get quilted, Brenda mentioned that it was a beautiful day - let's ask the guys to go on a bike ride.  Still only having a mild headache, I agreed and we did.  What a wonderful ride!

About halfway through, after sitting in the sun for a bit chatting (it was not hot), my head started throbbing.  By the time I got home, I was miserable.  I came straight in and leaned back on my recliner and fell into a deep, exhausted sleep.      

I cannot begin to tell you how frustrating it is to want to LIVE life and enjoy every second without PAYING for my decisions to have fun.  Every.  Single.  Time.  It is so maddening.  It pisses me off.  But I continue to try and try again.  And it never fails, I suffer.  

I was given my death sentence in 2016, but I am still alive - and I intend to use every freaking minute I have enjoying it.  I will not give up, give in and toss in the towel, but please tell me how to accept that I will pay for every one of those decisions.     

This is me looking in a mirror.  I only see my moma looking back at me.  She was also sick.  I know how she felt.  She just wanted to sit, but she didn't have money to go anywhere, so that is what she did - sat.  She listened to my stories of kids and camping, my sister's stories of her moves and her kiddos, she listened to my brother's stories of Germany and my other sisters trials and tribulations.  And she did a lot of praying for us all.  I see what happened, she was too poor to go out and enjoy life, so she sat and thought about how sick she was.  She lost the will to fight any more.    

Come to think of it, I see me looking back and defying the odds.  I see me fighting like a banshee and continuing to put one foot in front of the other.  I see me crashing when I poop out and then getting up to do more.  I will go in the hole fighting to have one more moment.  I have to remember not to withdraw though.  

Primary immunodeficiency sucks.  Lupus sucks.  ICL sucks.  All together - I will thrive and survive.