No Sleep ’til Brooklyn


 

Actually I am not going to Brooklyn, I just can’t sleep again.  I haven’t written (again) in forever (again) and it’s not like I have a whole lot to bring to the table, but here goes anyway. 

 

This is in no way a plea for anything; I just have to let it out of my brain.  I’ve been sick.  I have Sjögren’s Syndrome, and it’s an autoimmune disease.  Do you think I have AIDS when I say that?  It feels like I am saying I do.  I don’t.  I didn’t catch it, I just have it.  As it turns out there is nothing on earth I could have ever done to prevent having it, and looking back at things…I have had it my entire life.  My body fights itself and my ability to fight infections.  I have had e.coli, giardia (twice) and all sorts of  other fun.

 

So I recently had a little stay-cation at Chez Mercy Hospital.  It was a totally spontaneous vacation (the best ones always are, aren’t they??) My stay was packed with four luxurious nights of broth and jell-o, and an exquisite blend of saline and dextrose at my fingertips.  Actually the IV was in my right arm, then they moved it to my left hand, then it was in the back of my right arm again.  It was all part of the mystifying fun and adventure.  My favorite part of the adventure was leaving there not knowing exactly what is wrong with me.  We have determined it’s either some form of colitis or Crohn’s Disease.  Can you stand the excitement!??  Me either.  I can hardly wait to book my next excursion…another colonoscopy!!  TMI??  Yep.  Thought so.

 

Unfortunately I am no stranger to the hospital, so that part’s not a big deal.  It sucked being there and I am in no hurry to go back, but what sticks with me is the remaining fact that these autoimmune diseases don’t like to be lonely.  They are like Ruffles…you can’t just have one.  And the more you have, the more susceptible you are to have even more health problems.  I didn’t know that, it was not in the brochure.  This whole recent experience has really changed my perspective on life.  I have felt physical pain a lot.  I have had 3 babies (which was cake by the way, compared to this), and I have daily random pain.  This pain, this time…it was different.  I have been thinking about things differently now.  I am a little more patient, (when I am not freaking out and crying for no reason) and I am spending more time with my kids. I have been telling them things they will need to know just in case I am not here when it’s time to learn them.  I know I will probably not live to be an old lady.  That stings a little.  Ok a lot.

 


I am trying to let go of any drama I may have in my life.  I am trying to savor moments more.  I am living like I am dying.  Even though I am not dying, well, we all are dying each day, but I don’t have a death sentence with a time stamp on the end.  I just have to watch out for things more closely than I did before.  I don’t know why I am typing this, it’s really more personal information than I care to share with people but sometimes my cup of whatever this is runneth over, and when it keeps me awake, I share it with both of you who read this shit.  (Yeah, like there are two of you!)

 

I guess if there is a point to any of this, it’s that I am loving my kids more than ever, and my husband too, even though I think he thinks none of this is real, and I could cure myself if I would just take my vitamins and drink more water.  Gotta love him.  He certainly loves me.  I never imagined in my whole life that I would have a husband that would prove he meant it when he said “In good times and bad, and in sickness and health”, but I got him.  He is wonderful and so patient and kind.  There is nothing on earth he wouldn’t do to make me feel better.  That’s the truth.

 

I also have to brag about my daughter for a second.  I was at the grocery store on Saturday with her and her friend who was sleeping over.  They asked if they could walk around instead of buying groceries with me, so of course I said yes. We were at Wal-Mart and I wasn’t about to pass up the chance to have them get some good ‘People of Wal-Mart’ pictures.  I grabbed all the stuff from the list, and a couple extra things for them to snack on, and I was in the checkout aisle when it happened.  I started to get hot like I was going to pass out.  I texted Madi to tell her I was in checkout lane 6.  Thankfully she got there quickly.  I needed to sit down but I knew that if I did they would probably call an ambulance and I really don’t feel like paying $500 for a ride to the hospital again, or making a scene at the Wal-Marts.  So I handed Madi my debit card and said, “You are going to have to do this.  I feel sick.”  I went to the car and pulled it up close to the door outside and she and her friend loaded all the stuff onto the belt, then paid for the groceries and brought them out to the car.  She is 12.  She has a mom who is sick.  I hate that for her.  She has seen her mom in the hospital on a few occasions.  She isn’t afraid of me.  She crawls right into the bed with me and is asleep and drooling within minutes.  My little bitty (my 4 year old) is afraid of me when I am sick.  She doesn’t understand it.  When I came home from the hospital this time, she didn’t want me to help her take a bath, to lie in bed with her, to read to her…she wanted her daddy.  That broke my heart.  I have been talking with her about it and now  she has eased me back into her little world.  She and I are peas and carrots again.  Tonight when I was lying in bed with her, I said “I have to go to my bed now, baby, I don’t feel well.”  She replied, “Mommy, go drink some of your hosipal (hospital) water.  It will make you feel better.”  Then she sang ‘Twinkle Twinkle Little Star’ to me.  My girls seem to be little mommies, they definitely have the nurturing thing down.  My son is casually indifferent but I can tell it bothers him.  I don’t know what to say to him, he is 14.  I love him so very much, I still see that chubby little blonde baby every time I look at him, even though he is in high school now.  What do you say to your kid when they want to know why you can’t do the things other moms can do?

 

I am literally worth nothing without my family.  They keep me going.  They make me swallow the stupid pills that put my disease to sleep.  They give me the strength to get poked by a zillion needles and have gallons of blood drawn (did I mention I loathe needles and pass out at the sight of blood?), and to lie inside loud banging machines to find out what’s wrong with my guts and what I can do to stick around and get better.  I truly never feel alone.  I feel happy and safe here in this house with them all around me.  I am so very sorry for whatever I did in this life or any past lives to bring this annoying nonsense here to them and myself, but I must have also done something good because they are here with me, and I love them more with each moment.  This, along with every other silly thing I write makes no sense, but it’s gotta go.  I can’t keep almost crying at my desk at work.  I can’t keep staying awake.  I have to let it out.  Done.  Now, one foot in front of the other…

 

Love, Peace…

Padinkydink