I'm a firm believer that homemade gifts are the BEST gifts!!  My 13-year-old daughter has been working for weeks on this special gift of memories for my birthday.  So many happy times.  Definitely gives me the second wind I needed to fight and conquer chiari for another year.  

One thing I've learned over the past couple of years, every happy moment I experience comes with a huge cost!  I keep the ugly side of chiari out of the public eye, but today I feel the need to share just a little bit of it.

Good chiari days are far and few between.  I know I've had surgery and many are under the impression that I am doing 'well' or am 'cured'.  I am doing well, compared to others with chiari whose disease is more progressed.  I'm not cured.  Each day is a struggle.  Everything hurts.  From the top of my head, back of my eyes, teeth, spine, joints, skin...did I forget anything?  It takes deep concentration and meditation to get through one day.   Usually, by the time I get home in the afternoon, I'm exhausted from fighting so hard.  I sleep.  I sleep a lot!

But, I may have chiari...chiari doesn't have me!!  I still get up every morning.  I still give it a good fight.  I embrace new days.  I welcome birthdays.  I will push myself to go to an event, knowing the physical price I will have to pay.  But it is those special moments...those happy times...that get me through the bad times.  When I feel like all hope is lost and I just...can't...continue...the...fight, I have videos like this to remind me just how precious life is!

Life is precious.  Nothing is guaranteed.  No matter what your struggle is...don't let it become who you are.

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