Back to the ER with Mikaela

Posted: June 28, 2012 in From the Momma Bear, Uncategorized
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Blog Post from Mik’s Momma Bear: 

Normal… can you ever get tired of hearing that tests show everything is “normal”?  Unfortunately it’s not normal!

Last night, Mikaela collapsed.  I found her on the floor in the front room.  She felt dizzy, legs would not work and, more disturbing, she had a sharp intense pain on her left side… slightly under her rib cage.  It was very painful to the touch and was radiating pain.  To make matters worse, Mikaela’s awesome wonderful cardiologist, Dr. Numan, was out of town.  To say that we think of him as our lifeline is an understatement.  He takes her health and illness seriously and continues to work with us to help ease the pain and symptoms associated with Dysautonomia and possible Myasthenia Gravis.  We know she is facing some other possible co-existing unknown syndrome/illness that is causing pain and severe symptoms.  The dysautonomia is just the tip of the frustrating iceberg.  I am determined to find this mysterious unknown factor so we can at least have a little more predictability and help ease these debilitating symptoms .

Back to the ER trip last night:  The ER did some basic blood workup and a cat scan.  And the results all were…. NORMAL!!  You would think that would make me happy.  However, we have known Mikaela’s health and unpredictable symptoms are anything but normal.  Instead of transferring her to Children’s Hospital where they could review her situation in closer detail and find out what exactly is ABNORMAL, they sent her home with the instructions of “if you continue to have problems, come back and we will reassess”.  Also, they want us to follow up with her cardiologist.  With him being out of town, the cardiologist office told us to go to the ER.  Very tiring cycle!!  This cycle not only cost us more than we care to count, but more importantly, weighing on us – especially Mikaela – mentally and physically.  (I will pay any amount of money to help my girl.  It is just these unproductive trips are getting us nowhere.)

Now, don’t get me wrong.  We really love our local hospital and their staff.  I know the ER has many cases coming their way and they seem to look for the obvious illnesses and injuries.  They have their hands full.  But families like ours have no where to turn to when severe episodes strike after normal business hours and/or on the weekend.

What is the solution to this problem?  I have no idea.  I just know I want my girl to quit hurting.  I want her to be able to walk without ever once thinking she needs to find somewhere to lay down for awhile.  I want to quit finding her on the floor.  When I help her after a collapse, I am filled with awe seeing the look of Job’s patience on her face waiting for her legs to work again.  The lessons she has taught me – her mother – on life and rolling with the punches is priceless.  And I thought I was already good with those lessons.  She is even better. Seeing her struggle with grace, perseverance and wanting to help other teens instead, brings tears to my eyes.  Very rarely do I try to let her see these tears fall.  So instead, hiding behind humor helps and she knows me for singing cheesy “Dys” songs.  Meaning… songs that make us laugh that can seem like they were written for Dysautonomia sufferers.

So my sweet daughter, this song “Lean on Me” is for you!  Our Dys song for the day.  When you need me to pick you up and I tell you to lean on me… remember to seriously lean on me!  I always love making you laugh with my non- Kelly Clarkson singing voice : ) (And you know I am a big American Idol junkie… below is Lean on Me by the adorable David Archuleta)

Lean on me, when you’re not strong

And I’ll be your friend

I’ll help you carry on

Lean on Me

  1. Hello, my name is Jen. I am 32 and have been dealing with dysatuonomia since I was 19. I have had severe sharp pains along my rib cage. I went years not knowing what it was and it is indeed costochondritis. One sure sign is that it is physically tender to press on the general area where the sharp pains are. Sometimes they feel very deep but it is indeed superficial tendons, ligaments, and muscles causing the pain. I have found relief from the following: ibuprofen, prescription Voltaren gel (a topical anti-inflammatory I apply directly to the site, very helpful), and ice packs. Heat makes it worse for me. I find narcotic pain meds to be of little to no help as they do not help inflammation, the root cause. I just wanted to speak up in case my experience can help you. I am praying for your family. I know the journey you are on and it is not an easy one.

    • Thank you so much for speaking up and appreciate you sharing your experience. I knew bout the ibuprofen, but not the topical anti-inflammatory. And, I agree with you – the narcotic pain meds do not work.

      So sorry you have suffered from it for so long. Praying for you, too!

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