Saturday, June 29, 2013

Our Life with Lupus

     Officially, I'm the laziest blogger ever! No, screw that, I have Lupus! I can't let my lack of blogging guilt me, too. ( Even though I totally do.) Things have been a lot of the same since the trip to the lake.  Medsday Sunday, means Mother Fucking Monday (MFM). I refer to is as that with sheer honesty.  I, as the mother, feel like I am getting fucked over every single Monday!  The Littlest plays tee-ball every Monday, and I've never made it to a Monday night game ever! It kills me!  To see him in all his 5 year old swagger with 7 pieces of bubble gum in his mouth and his batting gloves in his back pocket, kiss me and walk out the door. I cry usually when they leave. I try to shower. I think it will soothe my soul and my physical pain, but usually I just don't. I wait til my meds get the better of my brain and hope that Train Wreck Tuesday is better.

     Train Wreck Tuesday(TWT) is my idea of lets try to make-up for the shit I didn't get done the day before.  That is also some sort of cruel joke I play on my self as well! The Middle usually gets the Littles breakfast and lets the dogs out before I even make it down the stairs.  It's funny how I can't exactly decide how I feel til I stand in the hallway between the bathroom and the kitchen.  It's my crossroads.  It's right there I decide whether I'm going to take my meds and go back to bed or take my meds and have a coffee.  Sounds like life altering shit right there doesn't it?  It is to me.  When I can't start my day with my boys, I'm missing out and counting on the Middle to carry the weight of worrying about me and watching over the Littles. Its unfair to both of us, and usually no matter how I feel everyone knows whether I'm pushing it or not.  TWT is usually a low key day because the Little plays ball on TWT.   The hubs coaches his team and the Little is bad ass. But he's shy, cool, calm bad ass. Like a real athlete should be.  He does his job and doesn't show boat.  I've only seen 2 Tuesday games.  Mostly because I over did it in the morning and fall asleep. The hubs won't wake me, but the Little is pretty good about giving me the play by play. It will never make up for time missed but it does heal my heart some.

     So, I'm not going to bore you with my everyday woes and wanes.  Kind of pointless and really damn redundant.  I'm pretty sure I told the hubs the other day that this shit was getting really, old really quick.  Truly it is. I rely so much on the Hubs and the older kids. I can't help be thrilled to be so  fortunate to have a husband that understands that Lupus is our life not my illness.  My oldest boys are the most understanding and accommodating to what I can and can not do it is amazing.  They give me no business about anything, when I can't make it or miss parts that I'm dying to be a part of. They also know this is our life.  I like to think, that in the long run, the Hubs and I are making them better men, husbands, and eventually fathers.  Life with Lupus as a family is really teaching us a lot!
     Apparently I am the only one on the low end of the learning curve with this Life with Lupus shit!  First forced family function to the ball park, 87 degrees with 90% humidity, full sun, 3rd base line, nothing but processed pork products and beer! Hell yeah! Sign me up! I live for these days! I bought a new tank and linen pants, bug eye sunglasses, sunscreen factor eleventy billion, and I'm all set.  Lupus is not going to ruin my day at the ball park! Score, yet another, for Lupus! Sun burned, dizzy, sweat through my linen pants, and over all just want to die. Time for me to go and the entire family wants to chew the face off of someone else in the car! HOT ASS MESS! That's all I am going to say about that!
     Saturday is here, my belly has still not recovered. Pretty sure doc is right and Chron's it is. My skin is peeling off, joints are beyond pain and I'm all blotchy, so I look like a hobbling leper.  But what do I think will cure that, my Hubs homemade meatballs in red sauce and copious amounts of red wine! I'm not going to win any battles I'm fighting today. I think it's best to just fill my belly with what I love and spend time with those I love more. That's Life with Lupus today!
Take Care of You....


  1. BTW....The Oldest two play all kinds of sports just not right now so that's why no individual pics of them. (Yes, I was totally feeling guilty about that)

  2. I know you weren't feeling that great after the ball game, but we really enjoyed having you and the fam over to swim and BBQ. Was really great to hang out again, hopefully we can have more of those days this summer.