PG13 Warning… saying goodbye to 2010 very bluntly!

So it’s down to the last few hours of 2010 and I can say firmly that I will NEVER look back on it!  Time to ‘cowgirl up’ and knock back the Gin with disregard to the slow painful burn.  I won’t be bitter and spiteful about it; I will just smile and dismiss it as one of the worst ever.   What doesn’t kill us makes us stronger right?

The not so good:  I have had to be tough, and by tough I mean REALLY thick skinned tough this year.  Lupus brought the challenges that kicked my ass.  Not only did it kick my ass, it literally wiped the floor with me.  It put me at 100 lbs, it put me in the hospital, it left me dazed, confused and learning how to be the new Julie without taking away too much of the old Julie.  It took precious time away from my family, daughters and friends that I can never get back.  Lupus has taken a lot from me but… AS LONG AS MY HEART IS STILL BEATING IT HASN’T TAKEN EVERYTHING!   So I will raise my glass tonight and say screw you Lupus.  So far, with God on my side, I win.

The good:  I have never appreciated life more than I do right now.  I never really realized how fragile we all are and how fragile life is until I was in danger of losing mine.  Maybe that’s the lesson out of this diagnosis.  We can be perfectly fine one day and dealing with a living hell overnight.  Maybe we need to be shocked into realizing the beauty that is all around us that we take for granted.  We are here for such a short time and the things that consume our time aren’t even things that will help us in the end.  Everyone seems so concerned about the size of their home, the size of their bank account, the luxury vehicles they drive and the designer clothes they wear.  It’s like everyone is living the photo shopped life and making themselves believe it is real.  Like busy little ants, scurrying around building their material empires.  In the end, none of it will matter; it will be the sweet things we said or did that will become our legacy.  

I started out saying “why me?” this spring and now going into 2011 I am saying “why not me”?  I can take this because I am me.  I have gained new strength and perspective and for that I truly am thankful.  I have found out who really matters, who never will, who my true friends are and made new friends along the way.  I have learned that unless you love the one you’re with you are not living, just existing.  I feel so sorry for all of the people out there that just exist.  I choose living!   

Cheers and bring on a Happy NEW Year!appH

Julie

HO HO oh NO!

With Lupus you never know what any given day is going to bring you.  You never know if it’s going to be good or bad so you just take it one day at a time.  Roll with the lows and take advantage of the highs.  I have been doing great lately but recently I overdid it and I hit the proverbial “brick wall” of fatigue that is so common with this SLE disorder.  

I was having one of those I feel great and can do it all kind of days, and decided on top of everything else I had done (housework, Christmas shopping, laundry, dinner, etc.) that I could squeeze in time to wash my bed comforters.  I have my own washer and dryer but the big triple loaders at the Laundromat are mega fast and fun to use so off to the Laundromat I went.  Ok, Ok, the machines aren’t fun to use; it’s totally a time thing.   There is something so relaxing about being in a Laundromat in the middle of the day.  It’s warm, there is a lot of soft machinery noise and it smells wonderfully like April Fresh Downy.  I thought at the last store I had been at that I felt like I was slowing down but I dismissed it.

After I loaded the comforters in the washer and started the machine I felt the horrifying fatigue and malaise.   It hit hard and fast as usual so I quickly sat down in one of those cheesy blue plastic body forming chairs; you know the 70’s retro type that are in one line attached at the bottom by one long piece of metal? I am thinking this can’t be happening now!  I just got back from a trip to Kentucky, spent hours in the car, endured hotel stays, started working out again, Christmas shopped early, and had the tree up and decorated the 1^st weekend in December and have been FINE. But I did it all in preparation for this:  an unexpected flare, frigging PERFECT!  *drips sarcasm and grits teeth*.  Well there goes my Martha Stewart image for the day!

I put my head in my hands and cried.  There was a Hispanic family near me that noticed, began talking real fast in Spanish (undoubtedly concerned about my tears) but I didn’t care – the tears kept coming.  I cried through the soak cycle and wash cycle, sniffled through the extract cycle and was finally was somewhat tear-free by the tumble cycle.  While all of this was going on my Blackberry was beeping and buzzing the latest texts, emails and facebook stories of the day against my forehead (I had it in my hands when I sat down).   I tried to answer texts from my friend Tamura and get the eye make-up that ran all over off my face with my sleeve.  I was supposed to be going to gym with her later and meeting a new trainer but knew I had ‘blown’ it, he would have to wait until another day.    Fan-freaking-tastic!  I have been fine and seriously??  I am having a meltdown in the middle of North Carolina in a Laundromat for Pete’s sake.  I wish I was not such a type-A personality.  I set the bar high – too high.

I wonder if the Hispanic family judged me.  They looked like they felt terrible but could apparently speak no English.  There was no way for me to let them know I was sick  The lady at the last store I had shopped at prior to the Laundromat was rude and assumed I was walking slowly down an isle just to piss her off.  She couldn’t wait to briskly walk by me and give me a dirty look.  It wasn’t her fault, she judged me and had no Idea my energy was declining due to a disorder that causes fatigue.  I myself pretended I wasn’t slowing down why should I expect her to understand?

I wonder how many people judged Michael Jackson because he always had an umbrella held over him in the sun.  It wasn’t their fault that they didn’t know he had been diagnosed with Discoid Lupus and even a touch of sunlight on his skin could be harmful to him.  Or maybe they laughed at him because he wore a mask outside; not knowing that the Lupus causes our immune systems to go so out of whack that even getting a normal cold from someone could turn deadly.  As for Michael in the wheelchair, he most likely was suffering from terrible joint pain and was not too lazy to walk, just sore and fatigued.  It is for these types of reasons that I don’t judge people.  

If someone is going 90 down the freeway and cuts you off think possibly they are rushing to the ER for some emergency.  Maybe the lady you see in Wal-Mart who appears to be on drugs and has been stumbling around shopping and then collapses isn’t on drugs but has cancer, has been given 2 months to live and wanted desperately to buy her last Christmas presents for her family herself (true story that happened to my friend Erin who was greeting at Wal-Mart to earn Christmas cash).  Whew, okay my rant is over.  

I am hoping that all of my friends and family members have a blessed holiday.  Since I only get one shot at life and there are no re-do’s I am taking extra time this season to hold my daughters a little tighter, talk to my friends and family a little sweeter and love with my entire heart and soul.   Merry Christmas

Peace and Blessings,

Julie