Money Money Money

Covered by insurance,

NOT covered…

and on and on and it goes…

Even when things are covered, frankly it’s pathetic… Because First we have the deductible, and then a Co-Insurance amount (which is really like a second deductible) and then there is the ever constant Copay… and all the things that just “are not covered”…add in to that

needed supplements


medicines (some covered some not all at Varying rates)

detoxing needs to keep us OUT of the ER

and the glorious ER visits

$75 copay for THAT plus all those other confusing bills that follow…

on and on and on and on….

HOW do other people do it?  Some people I have talked to, have made the decision to NOT do it, to not get better and to plug away at life and pretend they are not REALLY ill…

OTHERS have chosed to NOT do it by NOT paying their bills and are just waiting to be evicted from their homes, waiting for forclosure.. they only pay the bills to doctors they KNOW they will have to see again, because they don’t want treatment cancelled.. so they choose not to pay their mortgage, not to pay their taxes, not to pay their phone bills or what have you…

some have gone on public aid.. or so I hear..

We have opted to try to pay our debtors… all of them.. chosen to HONOR each debt our family has incurred… NOT that any of them are patient, or all together WILLING to work with our situation…some may call us fools for even attemting this route.  We feel it’s a matter of principle.  We feel it’s our integrity on the line.  Sure it would be wonderful to get a call from a dr’s office or a hospital saying, this bill or that bill has been forgiven… We would REJOICE!  We would Praise God in heaven for laying that on their hearts, and thank them profusely… THAT has not happened.  Our economy is harsh right now, and such generosity is not there today…

We have Lyme disease.  Not cancer.  (I don’t wish to imply that we would rather have Cancer… please hear my heart on this) We have LYME, and it is NOT something people really KNOW about. We don’t look SICK enough for people to feel concerned… WE are not a story to rally around, not a reason to draw empathy, or anythig, NOT that we want a whole lot of sympathy… But people DO rather act like we just contracted strep throat and will be up and around in 4-6 weeks, so WHAT is the problem… HA!   If ONLY you knew more about this disease… 

We may be 5 with lyme and one baby… But I can promise you THIS, we won’t be noticed at your local Walmart.  You won’t see us and think, “THERE goes a really ill family”.  You would certainly pass right by us…

We walk slowly, but that can be chalked up to lazy day strolling.  We smile and laugh a lot, but that is because we love each other, and hang out together a LOT, and have been ill a long long time.  Just getting diagnosed doesn’t mean we “just got ill”.   Sometimes we can be irritable with one another, but THAT is seen EVERY day at the local stores.  Some days Buddy can feel hyper, other days very emotional… but how is that different than what you see other five year olds do at the park?  Some days Princess is in pain and wears a frown, but people usually think it’s just preteen ATTITUDE.. they are sorely mistaken… Sometimes C.S. can be  forgetfull, and it’s written off as normal teen behavior, when in reality, it’s brain fog, and it’s horrible for him.  It really IS different, but short term YOU wouldn’t notice.

Even our neighbors don’t really GET that we are ill.  Why?  Because we HOME educate.  They probably think that when the kids are inside they are just doing school, because when they SEE my children, they SEEM fine.  My kids go to school even when they ARE not feeling well… They might just do school in their PJ’s on an off day, or lay on the couch to do their reading and so on…And if they ARE just too ill to even deal, then it’s just a sick day… Clearly they don’t go out to play with the rest of the children when they are having a bad day.  The neighbor kids don’t either…Makes sense doesn’t it?

Living with Chronic Illness is HARD for people to understand.  They are used to the flu, or even strep throat.  Some can grasp long term illness, because unfortunately their lives have been touched by something awful like MS, or Cancer or some such wretchedness… they have seen the torment, and can grasp.  But what these folks can not grasp is the windows of what seems to be “wellness”, for it seems totally contrary to being truly ILL like what they have grown accustomed to seeing.  What is hard for persons who have experience with long term illness to grasp is the way Lyme can ebb and flow.  A lyme sufferer can have a totally impossible day, and somehow muster the ability to SEEM fine for a 2 hour dinner event, not always, but sometimes.  Lyme is literally just hovering UNDER our skin, it isn’t always very visable to you and to me.  And children with lyme are masters at this.

It took my husband years to really grasp that our children were ill.  He only really saw the illness when it was acute, like when we are AT the hospital ER and the child has a spiking fever of 104, in horrid pains shooting up and down feet and legs, and doctors just DO NOT know what is the matter.. When he looks at the bills at the end of the year and wonders WHY so much in the medical catagory?.. why so many specialists??… WHAT EVER is the matter with them anyways??

And there are no answers… I had none, the specialists had none, it’s just more money OUT the window… flying with the breeze, gone with yesterday, forgotten, because today brings new issues, new symptoms, new emergencies….

The children  would do everything in their power to seem WELL by the time Pa got home.  One did not want to miss family supper time.  Or what IF we rode bikes to the park to play?  What IF we watched a movie, or Pa read a story??? You wouldn’t want to be the one to MISS OUT!!!!!!!!!!  So they’d push themselves so hard, get school done work hard, take a nap, crash, go to doctors, do school work EVERYWHERE, in the library, in the car, in the doctors office, in the hospital waiting rooms… Just GET it done, so when collapse happens (not if, but WHEN) you were ahead in lessons, never behind… and this is how they lived.. go go go… always on the move, to a doctor for Princess in the morning, for Buddy in the Afternoon, only to go to Hospital for tests after, and tomorrow to another town, another doctor for C.S. , and Ma the day after that, and on and on and on…all the while Pa would just work and work and work and sort of wonder where ever was the money going?

IT wasn’t like HIS bride was at the mall like some of his pals brides…

he looked carefully at her side of the closet.. nope same ol’ clothes, same shoes…

Look at the bills… doctors and more doctors… Pharmacy bills, healthfood store

I was aways telling him about the symtoms, and though he didn’t really doubt me, he didn’t SEE either… they, the darlings, didn’t want ANYONE to see… and often still live this way.  It was only when Pa started manifesting real symptoms himself, when they rallied around him… asking questions about his symptoms, being real confidants… that they began to let him SEE them…

why ? 

i don’t know

they adore him.  but somehow, his being gone all day, they just didn’t want to let him down.  wanted to be his little marines, be tough, not complain…  

We do that with people too don’t we…?

“how are you?” they ask…

“fine” we answer. 

Why do we answer that?  Why do we do that with people we KNOW really care and desire to know?  True some just ask and expect a simple “fine” as an answer, and anything else would be silly.. but why, why do we still respond so plainly with certain people we KNOW care?

Because there is only a few moments with these loved ones and to go into the details of HOW we ARE may just not be HOW we wish to spend those moments with that person..  Life is fleeting, time is slipping through our fingers like grains of sands and we don’t want to waste it whining…. we want to enjoy this person right here, right now!

I think that is how it is with the Blessings… the three of them see Pa as a pretty HOT commodity… He works a LOT, and he is SUPER important to them.  Why waste time whining about how we feel… lets try to pretend everything is ok, we can be SILLY and have FUN,and MAKE memories, really.. so we can enjoy Pa,.. cus bedtime comes quick, and he won’t be here in the morning…or at lunch, the days when you have pain are long….

Kids are amazing… Mine teach me things EVERY day… teach me things about myself, my soul, my sin.  I don’t TRUST enough, I don’t trust people I love, to LOVE me back, they way I NEED…

and I need…

don’t we all?

Why don’t we TRUST?  We get hurt, and we build these WALLS, because we don’t want to be hurt again….

But Jesus wants to see us tear those walls DOWN, to trust HIM, and to LOVE…  LOVE came into the world to heal us, His name was Jesus… HE will heal.. maybe not from lyme, but He is healing my heart, my soul, my mind…

and that is HUGE!

Because this life is NOT about money money money…

 it’s about hearts, it’s about souls, it’s about PEOPLE

and love is what will heal us…

Money …. sure would be nice to buy medicine for my kids

Money … would be great to pay off the debt we have from medical bills

Money … is helpful to buy all that expensive gluten free special diet food we need

but Really, we can NOT live with out LOVE

for with out it, we would be destroyed by this….

do you have it?  I pray you do! 🙂

statue in lyon

About sweetnika

Home Educator, Loving Wife, Born again Christian, decorating, photogaphing, blogging, reading adventurer, off on an exciting new adventure!
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7 Responses to Money Money Money

  1. Susan Wetzel says:

    Wow, a homeschooler too ! Me too…I`ve still got five at home …all lymie….all misunderstood….but all loved and loving : ) We are truly blessed. God is SO good .

  2. Casey says:

    Wow, this post had me crying.

  3. Dawn says:

    Wow! What an amazing post. I can relate to so much on so many levels. The co-insurance is such a nightmare. I finally quit work so because it was costing more money then if I wasn’t working altogether. I admire your strength, courage, determination and faith. I have Lyme (was just diagnosed a year ago after being so sick) and a whole host of other issues and this journey is definitely difficult. I can’t imagine having to go through this journey with almost your entire family. Thankfully, we are not alone and when times get really tough, Jesus will carry us through. That doesn’t make it any easier, but it is a comfort to know that He will always support us in every way. I have saved your blog address and will definitely be keeping your family in my prayers. Here is a worship song that has been really encouraging lately to me: Blessings to you!!

    • sweetnika says:

      your words are so precious ! Thank you for taking the time to share your encouragement and love for our Savior with me and mine! 🙂 Jewels in my treasure box my new friend.. truly! thank you ! and do come again often!:)
      (((hugs))) praying for you and your continued healing

  4. Danielle says:

    I just found your blog! I can’t even believe what you’re dealing with. This post made me tear up because all the talk of being misunderstood…it’s like the words you can’t quite find or have the courage to say to others- you spelled it all out perfectly! My husband and I are battling Lyme Disease as well…I can’t even imagine having 5 lymies in my house. I am stressed as it is with just my husband and I. Not to mention you homeschool?!?! Seriously- do you have a secret? Because you are sounding like superwoman to me right now! Prayers and hugs your way:) I hope so much you all get well soon.

    • sweetnika says:

      I am so blessed by your comment! 🙂 I DO have a secret! The Lord is my refuge and my strength.. my very present HELP in this trouble… HE is SOOOO great to me! Every day, and HIS grace IS AMAZING (NEWTON was sooo SPOT on with that song! ) I walk through this ONE day at a time, and do my best to let each of the blessings do the same…. I can’t even imagine how they would finish a school year IN a government school… they have so many “sick” days… Days we CAN do school.. but from the couch, or from bed.. and days we can’t.. I really don’t sweat it.. In the state of Illinois, I aim for 180 days of school ( I need around 170 something – ever the OVER achiever I just round up) … I figure GOD gave me a WHOPPING 365 days to get it ALL IN! so we just keep going.. sometimes we do school on Saturdays… when other kids have institute days.. we don’t.. 🙂 it ALL gets done, and done beautifully ! They are also learning ALOT of biology! Human anatomy, and health and human services! (giggle) not too many kids see as many doctors, nurses …

      I am so sorry to hear of your struggles with this wretched Plague on our society! I will be praying for you! Please keep me posted! and visit our little Lyme world here often! 🙂
      you are LOVED! and you MATTER ! even when you feel misunderstood, like NO one sees you.. you have a place.. you DO! You are PRECIOUS! YOU are loved!
      yours in Christ
      < sweetnika

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