Despite all of the bad days, the near constant pain, the undistinguishable and the distingishable symptoms, I have good days too. Usually when a good day comes my way I do not question it; instead I dive head first into a project or an activity, knowing full well that my carefully stacked wellness is a contingent life-like game of Jenga. Each exertion is done cognizant of the possibility that my good mood can shift. It is important for me to enjoy the good days but to do so with an open mind.
After a pain-filled week we decided to take the boys to the fair again. Somehow the fact that it was a Saturday and the final weekend didn’t occur to me. The whole day was a little frustrating. I woke up moody, but mostly in good spirits. I was experincing eye pain, but I wanted to give the boys some laughter and good memories.
When we arrived, the parking area was overflowing. The lines were incorrigable and there were so many people my anxiety went through the roof…especially when I pushed the stroller to the ticket window and looked back to see Jackson playing with someone’s discarded cigarette pack filled with the butts.
The bathroom lines were insane and I was way too warm, depsite the 60-degree weather. However, despite all of this, it was worth it. Any day that I can spend with my family is a good day. Standing with Jon’s arm around me as we watched the boys “carnival ride” with giant smiles was a sight well worth the aforementioned frustration.
It is hard to have an invisible illness, to constantly have to explain why I look normal on the outside while complaining of anything but normal insides. It is a feeling carried by isolation and discontent.
In other news, according to my recent blood work my liver enzymes are still high but my red cell count was low, even by my historic standards. I asked my infusion nurse why she wasn’t concerned and she stated that I am anemic. I have been iron anemic for as long as I can remember, my point was that I was complaining of blood loss and then my results came back lower than MY low. The nurse suggested a multi-vitamin with iron. I have no idea if I am supposed to notice a difference, but I have been taking it for a week now. I have also drastically decreased my caffeine intake. Something I am both happy about and deeply saddened by. With my schedule I basically survive on caffeine and inappropriate humor. Nobody has died in the last week but if I continue to wean myself off of caffeine, I make no promises of future body counts.