Nicole LoBianco | CaringBridge

Nicole LoBianco Nicole-Keeping on

First post: Feb 13, 2018 Latest post: 7 hours ago
Welcome to my Caring Bridge site.  I have decided to start this site for a couple reasons, one, it is just an easy way to keep everyone updated instead of leaving people out or mass texts (which everyone loathes) and two, selfishly I feel it could be helpful to journal my journey through my health crisis.  Folks can pop in and read when they like, or choose to ignore until they like.  Mainly, I am here because, well, I'm sick.  I hate saying those words, I hate writing them, I hate living them.  I can't ignore those words though anymore.  I can not hide it, and can't escape, because Lord Himself knows how I have tried!  I am sick.  I have some sort of horrific neurological condition me, my family and doctors have been playing a not-so-fun game of "mystery diagnosis" for about nine months.  It has been the hardest and scariest thing I have ever gone through and not so much for me, but for all the pain and frustration it has put my loved ones through, my friends, my co-worker and anyone else who has depended on me.  
For now, I have been given the diagnosis of some sort of small fiber autonomic dysfunction.  Just that has taken me so long to just hear someone say, "Yup, think I know what this is." 
May my family and I went on an amazing vacation to Punta Cana.  We had an amazing time.  I swam in the ocean, ran along the beach, built sandcastles, hiked, drove doon buggies, laughed, ate and drank some cocktails.  I was so grateful for that time.  I just did not know that just months later at 37, I would be having a hard time just walking across the room and holding my cell phone would feel like a boulder.  June I noticed weakness in my legs and just blew it off as being exhausted, being out of shape or not eating well.  It became harder and harder to move and I was noticing concentration issues.  Now, I am known for being a little quirky and little spacey but this was a whole other beast.  Soon after, my hands became numb and my arms became weak.  I was losing motor function and just felt so fatigued like I had ran a marathon everyday just doing the basics.  I will not go into all the symptoms as it does not matter.  Finally, in September, I had had enough and talked myself into going into my primary doc for a visit.   I really did not want to as I just do not like going but I like to tell myself I owe it to my kids to keep myself healthy.  I went in fully expecting to have some sort of vitamin deficiency, get some prescription and be on my way.  NOPE! All test results were fine.  All was good.  
I went until October figuring if I just ignore it, then it will go away.  My stomach was hurting so bad, I had a burning sensation all over my body and was just miserable.  I swallowed my pride and asked one of the general surgeons I work with to run some tests.  Gallbladder dysfunction.  That was it!! Meanwhile, i had lost 30 pounds and was so weak it was terrible.  Going to work, and then being done for the day.  Absent from my life completely.  Irritable to the max! Emotional like I have never ever known ( Nicole DOES not cry).  I got my gallbladder out OCT 13 and for a bit I felt good.  The pain and pressure in my guts was better.  I had a lot of inflammation and reflux, but that is okay and now if I got back to eating better, my weakness would go away.  NOPE! WRONG!
I returned back to my doctor and asked for a referral to a Neurologist.  He was happy to help and all signs were pointing towards something like multiple sclerosis.  SCARED! 
Fast forward, I was poked, stabbed and stabbed, scanned, electrocuted and stabbed some more.  EVERYTHING LOOKS NORMAL.  UGGGH! Why does hearing the words, "normal" and "all within range" become so frustrating.  No one WANTS something to be wrong, but when YOU know there is something very wrong, I want someone to tell me.  

This has been frustrating on so many levels.  Navigating the health care system has been an extreme eye opener.  I am amazed that anyone ever gets diagnosed with ANYTHING after what I am going through.  I do not say this to wage a war on healthcare or put down any doctor or facility, I say this as someone is is ill and I do not have the time or the energy to sit on hold, wait months to see a doctor for 15 minutes to be blown off, to wait on hold for insurance to be told I need a prior authorization for EVERYTHING and then told no.  I am at the mercy of doctors and insurance companies.  My life is in their hands.  I have been blessed with an amazing primary doc who has done all he can to support me and his office staff has never made me feel like a burden or a hypochondriac.  They have truly been caring and supporting. The world of specialists has been not so great.  It has down right sucked for me.  
Meanwhile, I do not leave my house much.  I had to take almost a month off of work to try to get better but better never came.  My family is suffering as their Mom or their "glue" as most of us Mom's are is crumbling.  I cry.  I never used to cry.  I cry now.  I am sad.  I never used to get sad. I am sad now.  
I get scared now.  I never let much get to me before.  It gets to me.  I do all these things because I have kids whom depend on me.  I have a husband who loves me fiercely and a life and career I have built for me.  I am not having a pity party and do NOT want sympathy or anything.  I just want answers and prayers.  If I am made to walk the path God has laid before me, I will walk it.  I just am here now.  In the pit of not knowing.  Waiting this Earthly waiting game of tests, and insurance and waiting lists and paper work.  I am frustrated.  I never really got frustrated before.  Everyone has their limits.  Taking this Mama away from her kids is my limit.  
For now I lie here in the waiting.  I will stay faithful here in the waiting.  I will rely on God and myself in the waiting.  I will lift my eyes up here in the waiting and keep on keeping on.  I will be me again.  I WILL be quirky and funny and sometimes completely off my rocker again.  I will attempt to dance like no one is watching again, when clearly everyone is watching.  Just hang tight with me ya'll and just say a prayer for me.  It is truly all I ask for.  

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