Posts Tagged ‘teenager’

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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

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Sidenote:  (**Why in the world would I let a photo like this of me be published?  Besides my cute puppy, I feel it is important for people to understand that I have my good days and not so good days.  I don’t always “look” sick or exhausted, but I sure do feel it – like you can tell in this picture.  Most days when you see me in public, that means it is a good day.  Makeup application and artistry is my therapy and when I am out in public my makeup and vintage fashion is on! – if I can make myself look “human”, it helps me to feel better  Somedays, though, I can’t do much more than lay in bed.  In my blog, I want you to see the good days, the not so good days and, as my Mom calls it, my days where I look like I partied like a Rock Star… though in reality I might have been able to just walk across my room..) 

Written Monday, June 25, 2012:  After a long, fun relaxing week visiting family, (and getting spoiled by my grandparents), I am starting to plummet down the rollercoaster again today.

So far, today has brought me: terrible migraines, chest pain, difficulty staying on my feet, flared up Fibromyalgia (killer all over nerve pain), and of course, the low blood pressure. It’s to be expected, but still frustrating at the same time.  Just when I think I have the hang of this illness after suffering from it over a year and a half, a day like today happens along and reminds me how much I do not care to be on this rollercoaster ride. 

But hey, all I can do is sing Hakuna Matata and make the best of it…so I snuggled with my puppy chihuahua, Alice, and had a movie marathon.

On a positive side note, I will be delivering a requested Hope Kit tomorrow to a very seriously ill teen.  It makes me incredibly happy to give out Hope Kits and to see people’s reactions when they receive them…knowing that I was able to put a smile on their face. So that is my reason to smile this week, even if  I’m going through another crazy rollercoaster ride. 

My Song for the Day:  To know me is to know I LOVE MUSIC!  My MP3 player and my favorite artists have helped me get through the tough days more than I can express.  I will post my favorite songs from time to time and hope you enjoy them too!  Today’s song is pretty simple, yet exactly how I feel:

The Lazy Song by Bruno Mars

This song always makes me smile and the lyrics below really capture what I feel:

Today I don’t feel like doing anything

I just wanna lay in my bed

Don’t feel like picking up my phone

So leave a message at the tone

‘Cause today I swear I’m not doing anything.

 

On a serious, heartfelt note:  My fellow chronically-ill teens – always remember you really are not HIDDEN.  There is Hope.  And you have many caring hearts, including mine, who will continue to have you in our thoughts, prayers and actions.

 *Know of a teen either hospitalized or homebound that could use hope in dealing with their hidden life-changing chronic illness?  Please contact us for a Hope Kit at mikaela@hiddenheartsalliance.org.  We can ship nationwide.