Monday, February 18, 2013

Feeling the Pressure?...

  Today, I'm reminded of the ever present pressures of this fast paced world.  Funny thing is my reminder was the beginning symptoms of a sinus infection.  I kind of laugh when I think of how silly that is but...  it is what it is right?!  I woke up this morning with my normal stiffness thanks to fibromyalgia but for some reason I felt like there was something punching me in the nose ha!  I breathed in deep looking for the energy to throw myself out of bed and get back to the routine of school for my sweet girls.  It's a brand new day and even with the current "traffic jams" there's reason to smile. 
    I find myself thinking about the pressures of society, the medical community, school, friends, and let's not forget family.  If I allow myself to think about it all very much I'm quickly overwhelmed; especially in regard to the pressures of Cyclic Neutropenia.  Where are our counts?  Who is going to be there?  Is anyone sick or recently sick?  Is it buffet, because that won't fly?  The hospital didn't send the records!  The fax didn't go through!  Shall I go on?  Nah, you know what I'm saying.  I know it seems like so much and believe me it does to me too.  I have to constantly remind myself that it's just pressure.  Ever heard that before?  "It won't hurt at all...just a little bit of pressure" LOL...  I recall certain dental visits where I heard that bold faced lie before!  Kind of makes me want to run out screaming "LIAR" to the top of my lungs.  Then I laugh for a half second and realize that might not go over too well.
   As a parent, I've often heard other parents tell their small children that it (be it a shot or exam) won't hurt a bit.  Now, I'm not condemning for one second because if it works for you and your child then by all means.  However, this doesn't work for us.  If my girls are due for immunizations or blood work or whatever and they question me on the level of pain they are about to be subjected to I'm truthful.  Now, that said I am sure to include, in my honest responses to them, that pain is temporary.  I tell them that the hurt won't last long and that it's ok to cry and it's ok to be angry about it for a minute but know it will be over soon.
   In regard to the daily pressures of living with a condition that prevents you from fighting infection, don't you find yourself almost ill when you have to ask if that towel has already been used or how many more days do you have before the dreaded bottom of neutrophils?  We do...often actually.  I'll admit that I even feel some irritation when typically healthy people or uneducated physicians respond to me as if I'm a germaphobe without good reason.  Talk about pressure!  Hopefully, my delivery of this post doesn't hit like a rant because that certainly isn't my intent.  I simply just feel pressured today.  It's not all bad and many, myself included, often are more productive under a certain degree of pressure.  There are certainly good aspects of pressure...  Feel free to add your good aspect in the comments (I'm laughing again inside). 
  I hope that you find me very light hearted in response to this often painful topic.  Laughter relieves pressure (smile).  So laugh!  Next time you find yourself in a situation involving "just a little pressure", think about running out while screaming "LIAR" as loud as you can!  That should produce minimal relief in the midst of an uncomfortable moment.  I would love to be graced with your comments and responses but rest assured, no pressure here ;).  Be Blessed!

Wednesday, February 13, 2013

Sleepless Nights

   Here I am...  I've had a few messages and phone calls wondering where a new post was.  Its here I promise :).  Mileigh, our youngest, is due for her annual hematology/oncology appointment and I'm sure that will include an increase in her GCSF as a result of her recent growth.  I have thought about this briefly but haven't been for the appointment yet so the increase wasn't in the forefront of my mind.  Well, this weekend I noticed she was starting to drop and show signs of it.  We rarely develop mouth ulcers thanks to our daily maintenance dose of GCSF but Sunday night proved otherwise for my MiBeth.  
    My sweet girl's tolerance for pain is already nothing to fool with but I had no clue she had developed an ulcer.  She showed me that night and after careful inspection with a flashlight there it was rested inside her sweet cheek.  So the miracle mouthwash began to flow.  My girls are out of school this week for "family holidays" aka Mardi Gras.  Just a perk of living in the south.  It has worked out to our advantage though because its now Wednesday and she still isn't up to par.
    We have truly been blessed because its been so long since she has been sick but that also means we quickly became accustomed to more sleep.  For the past two nights I've been up and down with her.  Giving meds for pain, assuring her it was only a dream, and praying over my baby.  Last night in particular she and I sat in the living room and with her head on my chest I cried out to the One who can heal my baby.  I wasn't sure she had been awake enough to realize I was praying out loud until that precious voice spoke up and said "thank you, Mommy".  My heart broke as her eyes closed again and the tears began to soak her curly hair.   I know that she is ok.  I know it's just a drop.  Her temperature hasn't spiked and we haven't been in desperate need of the admission protocol in so long.  She's on the mend and I can tell.  All of that said, in the midnight hours while I pray over my girl, the panic rises.
   Emotions tend to be even more on edge when lack of sleep is involved.  Once Mileigh was comfortable and asleep again I was driven back to the times that I sat with Joeli's sweet head on my chest.  Back to the times that I prayed over her and held her through the night.  What I'd give to have her rest on my chest again.  I know Joeli is watching over her baby sister.  I know she smiles when she sees Mileigh play and I know her heart breaks when she sees her hurt.  This right here is why this mama's fight will NEVER cease!  Not a day goes by that I don't think about and miss Joeli.  Not a day goes by that I don't look into the precious faces of Brelan and Mileigh and become thankful for that moment. 
   I'll take my sleepless nights.  I'll take the days that follow with every stress included.  I'll take the heightened emotions.  I'll be thankful for another day with my girls no matter the conditions.  I'll watch Brelan and Mileigh and wonder what it'd be like to watch all three.  I'll be thankful for the three years I was blessed to know Joeli.  I'll provide memories for Brelan and Mileigh that they'll never own with their own memories.  I'll make sure they know her.  I'll choose a better attitude at 3 a.m.  Sleepless doesn't have to remain soulless.  I'm honored that He chose me and I'll be honored even at 3! 
   Mileigh is now napping with her big sister.  I'm praying her body is responding and that she rests well.  I'm praying that the strength she has only grows.  He hears!  Thank you for praying for my girl!  Thank you for your support!  By the way, I was honored to have people contact me looking for a post.  Y'all sure know how to make a girl smile!  Be blessed!

Friday, February 8, 2013

How Do You Know You're Neutropenic?

   Are you kidding me right now?! Really??  This question is borderline humorous for me when not an emergent situation.  Its a significant accelerator for a fight you don't want to be a part of otherwise.  I say a fight...I mean that in response to being spoken down to or questioning my knowledge of my child or myself.  If it's asked in a way that opens a door for awareness and true interest is shown then I'm happy to oblige.  I think its pretty clear I don't mean that in a cocky way so I'll move on. 
    For my girls and myself one of the first signs that our neutrophil count is plummeting is severe fatigue.  The yuck feeling is soon to follow complete with all over general aches.  Our gum tissue tends to get puffy and sore and often will bleed without irritation of brushing.  Usually if our gums and teeth ache at rest its typically indicative of a "bad drop".  My definition of a bad drop is one that lasts more than 24 hours.  If neutropenic fever is going to roar its ugly head then its around that point.  Even the slightest elevation in temperature combined with an already neutropenic body yields a pretty miserable feeling. 
   The question at that point is how do I make Mileigh and myself feel well enough to function until our body responds?   Motrin helps with typical inflammation.  Hot baths are the best for the body aches.  Making sure she gets several servings of "white blood cell increasing" foods during those days are vital to me.  She loves broccoli so I tend to give her lots of that.  I just steam and serve.  We don't do raw anything while we are down due to the risk of bacteria living on the foods.  I make sure that she's in bed on time and often up the vitamins.  Mileigh is in 4k at the school at our church so they, thankfully, still take naps.  Sleep is definitely key to providing our bodies with the best foundation of production.  I make sure she's in bed on time.  Some of these things prove kind of tricky when it comes to Mama...  I don't always get to bed at a decent hour and "nap" is often spoken in a language I fail to understand.  I try to increase the dark green and leafy stuff (cooked) and hot baths are my BFF!  My goal is to exercise at least three days a week in an attempt to give my body the tools it lacks to fight off infection. 
    Precaution:  we live a daily precaution for infection.  If we aren't neutropenic we could be and when we are neutropenic the precaution demands attention so we just keep them in place at all times.  I do laundry daily.  I know full well when I get to Heaven Jesus will have an amazingly stocked closet just for me LOL...  We only use our bath towels once and never wear clothing more than once between washes due to bacteria transfer from our skin.  We believe in clorox wipes.  Maybe I should check the stock market on that???  My house is typically on the chilly side.  We are all pretty warm natured so it works but it's more than that.  Bacteria loves warm places to grow.  Makes sense when I think about where skin infections tend to flourish.  I sneak healthy foods and "stuff" into the food I know my family will eat.  Applesauce and butternut squash make great substitutes (smile). 
   I believe Neutropenia affects each person differently.  We never know by looking at someone how they truly feel.  Be that physically or emotionally.  When you physically feel unwell much of the time it tends to take a severe toll on the way you feel emotionally as well.  This can be said for much more than Neutropenia, in any form.  There are so many of us who walk our daily lives with a smile on our face to not show the world the hurt.  It's up to us to make sure people know we care.  Obviously, we can't save the world, but we can give someone a reason to smile.  I designed a southern belle t-shirt last year for Neutropenia awareness and in honor of my sweet Joeli.  The quote on the back goes something like this:  You may not see the struggle, but the fight within is real.  Someone you pass today is in the throws of a struggle you may know nothing about.  Their fight is real.  Smile...you have today =). 
   I'm quite sure I've barely scratched the surface in regard to symptoms of Neutropenia so feel free to comment and add to.  I love hearing from you!  Be Blessed!

Monday, February 4, 2013

Run Wide Open

  Do you ever find yourself just wanting to run?!  I don't mean take a jog or get your cardio on with a ten minute mile.  I mean RUN!  Throughout my life, and especially in regard to illness and grief, I've found myself often in a full sprint to nowhere.  Grief stricken moments, days, and months after I kissed her one last time were often brought full circle when I found myself exhausted from the endless running.  I found myself in a state of brokenness that I never knew existed.  Even in the darkest of those days I knew He was near.  I knew if that promise were not true my heart would not continue beating.  I'm here to tell you that there is a promise to hold to.  There is hope for the hopeless!  It's no secret that I'm a wreck....  I wasn't sure I'd be able to write out loud like this when I knew in my heart that it was time.  I was afraid of many things.  Some days I still find myself in the throws of an internal fight for clarity.  I've been compelled to find a source of strength and I'd do you a disservice if I didn't share.  I want to share a couple of bible verses with you that have been pivotal in my strength for writing some days. 
                                            I have called you back from the ends of the earth,
                                                               saying, ‘You are my servant.’
                                                               For I have chosen you
                                                               and will not throw you away.
                                                                                   Don’t be afraid, for I am with you.
                                                               Don’t be discouraged, for I am your God.
                                                               I will strengthen you and help you.
                                                               I will hold you up with my victorious right hand.
                                                                                                    -Isaiah 41: 9-10
    AMEN, AMEN, AMEN!  Even in my brokenness and in the mess that I am, He still chose me!  I am overwhelmed when I think of Him holding me up with His right hand.  How great is our God?!  After all my junk and all my running I can tell you that I was used up and worth nothing.  I find hope when I hear from Him.  I find hope knowing that by the standards of this world I was done for but even so He chose me and refused to "throw me away".  
    I can say that I've tried to outrun Cyclic Neutropenia too.  Doesn't work.  This rare illness is one that demands a head on fight.  When I found out that Joeli was Neutropenic like me something within me changed.  That denial and running changed.  As far as I was concerned it was ON!  I refused to let a rare illness ruin our lives and cause us to live in fear.  Cyclic Neutropenia, in my book, had met it's match!  Joeli was so healthy I was often in disbelief.  Her three short years here consisted of admissions that I could count on one hand.  She laughed, played, sang, danced...everything I'd dreamed for her.  The outcome wasn't one I'd ever imagined.  She was too good for here.  That said, she now fights for her baby sister.  Maybe she fights for someone you love very much as well. 
   Some may say that Cyclic Neutropenia won.  I respectfully disagree.  Cyclic Neutropenia may have given me a gaping wound but my sweet girl won.  She won because He won.  He won 2000 years ago on a cross, He won the day Joeli awoke in His arms completely healed, and He wins today!  He won for me and He won for you.
   So, in regard to the run...yes, I still run.  I still think, at times, that I can handle my mess alone.  I'm hard headed and often find myself crumpled at His feet again.  You know what?  He's ok with that too.  I run wide open and often in the wrong direction.  He's a pretty good runner himself.  He's never far behind.  I find when I'm running in the right direction I don't tire as easily.  I find when I'm running to Him instead of in the opposite direction that there's a peace that is unmistakeably Him.  I don't find that peace anywhere else.  Actually, truth be told, running in any other direction leaves me overwhelmed, exhausted, and empty. 
    I don't know what direction you're running in.  I don't know if your struggle is within, physical, emotional, or otherwise.  I do, however, know the One who Won!
  

Saturday, February 2, 2013

You Are My Sunshine

    After the last couple of weeks of an emotional roller coaster, I was thankful to wake up this morning to no school, cool weather, sunshine, and happy girls ready to take on the driveway with their scooters!  I sat on the porch for a while watching them play and basking in the sunshine.  I love cool weather but this southern girl is ready for beach weather!  As I sat and watched my girls and listened to their conversations about lady bugs and strawberries I couldn't help but think back to the days when I'd sit and listen to Joeli sing to Brelan.  "You Are My Sunshine" never sounded so sweet.  Lately I've been working on the condition of this heart of mine and trying hard to lay all of this mess that is me at the feet of the only One who can do anything with it.  I was reminded of my perspective as a parent hearing and watching my girls play.  During those brief moments when life seems to be at peace and there's no arguing involved.  The days when Mileigh hasn't taken on the role of a spider monkey and flung herself around her sister...LOL.  The sweet moments...  Makes me think that surely, when I'm able to lay my junk down and let Him be who He is and do what He does, surely He smiles.  I can only think that those are the moments, as a child of the most high King, that he sits back, takes a deep breath, and smiles!  Can you imagine Him smiling on us?  He does! 
    I remember one afternoon with Joeli.  Brelan was tiny and Chad had been home from work long enough to walk from the front door to the back patio.  I was busy in the kitchen but overheard Joeli tell her Daddy to look up.  She said, "Look Daddy, you see that?!  God paints you a new one of those every day!".  Joeli was referring to the sunset painted across the sky and as I stood watching my sweet girl and the man of my dreams I couldn't help but think that He did all of this for me.  I was in awe of the child that was mine seeing Him and His hands so clearly.  If only the filters on the eyes of our hearts were often removed...  I wonder if the struggle to know, the struggle to trust would remain.  I'm convinced that is why He refers to our faith being like that of a child.
   On days like today it's easy to go back to those memories and to see faith so clearly...it's these days and these memories that I'm compelled to cling to.  This is what gives me strength to simply take another breath on days that aren't so clear.  On days that aren't so full of peace.  I wish I'd had this perspective during some of the darkest times.  Maybe they wouldn't have been so dark.  Whatever they'd have been though I know one thing for sure,  He runs for me...even when I run hard and fast the other way!  He runs for you... 
    I'm sure there will come a day that I'll need to return to this post to remind myself of my own words.  Ironically, I find with my relationship with Him, He's definitely got a sense of humor and often at my expense (smile).  He's good for smacking me with my own words from a previous and much clearer time LOL. 
              "You are my sunshine, my only sunshine.  You make me happy when
                skies are grey.  You'll never know dear, how much I love you.  Please
                don't take my sunshine away."
   I know full well there's more than this here.  There's more behind this beautiful day.  There's more within my precious girls than Cyclic Neutropenia and struggle.  There's amazing grace and purpose and a portrait painted with the hands of perfection at the end of it all.  For now, my heart is full.  For the days when I wake to grey skies,  His light isn't far away.  Joeli Lynn, you are my sunshine!  Keeping singing my sweet girl!  Shine bright!