It’s Only Temporary…. grrrrrr

Bringing about Dysautonomia Awareness is one of our primary goals at Mik’s Hidden Hearts Alliance.  Please review some of the main symptoms below and share with your doctor!  Many doctors are just now becoming aware of this frustrating condition and we need to keep this momentum forward.

And remember, no two cases of Dysautonomia is exact.  Not everyone faints or passes out (common misconception).  We – those who suffer from the impacts of Dysautonomia day in and day out – can NO longer accept the old advice “well, at least it is only temporary and you (a teen affected by it) will outgrow it.”  This advice brings out my momma grizzly bear.  Try living every day feeling like you ran a marathon on a daily basis not knowing if you will unexpectedly collapse at any given moment.  It breaks my heart to see my daughter have days on end like this and I know I for one would not like the unexpected falling, collapsing then, in Mik’s case, legs not working for hours on a regular basis.  

And, contrary to some of the advice we hear going around the country:  dysautonomia teens WANT to participate in life.  Their mind WANTS to participate, but their body is not cooperating.  So, in many cases, it is not mind over matter.  Once the teen and their caregiver(s) accept this, it is easier to accept the limitations and work within them.  This is one reason Mik’s Hidden Hearts Alliance offers socials and classes for our teens.  (See our calendar here.)  We organize events, classes (and now prom!) to work within the limitations and endurance of our hidden teens.  Interested in starting events in your area?  Contact us at info@mikshiddenhearts.org for ideas!

Yes, we believe in hope of the better tomorrow.  We are huge believers in regular physical therapy, counseling, massage therapy, relaxation techniques and socialization!  However, this advice that this is “only temporary” trivializes the physical and emotional pain a teen has to live with for possibly years before they get better.

We love hearing more and more stories of the teens who had a severe case and is managing to go to college now with modifications.  And we pray for you who still struggle and just getting out of bed is an accomplishment.  Whichever group you fall into, know we are here for you!

Want to nominate a teen with dysautonomia or other debilitating chronic illness for a Hope Kit filled with teen focused gifts and necessities?  Nominate them here!  

Posted by http://www.mikshiddenhearts.org.  Serving teens and their families who suffer from Dysautonomia and other life changing debilitating chronic illness.

Mysterious Syndrome affects some teens – ABC News

I have Neurocardiogenic Syncope and many symptoms of POTS so can really relate to this informative video clip (from 2008) on POTS (Postural Orthostatic Tachycardia Syndrome).  Posted by MHHA Founder Mikaela Aschoff.  www.MiksHiddenHearts.org 

http://abclocal.go.com/wls/story?section=news/health&id=6505198

Back to the ER with Mikaela

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

Lean on Me