Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Getting It Out

Written by Katie. Posted in Challenges

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I got a text from Allie a little while ago that said, “Where’s an update slacker?”  My response?  “You don’t want an update.  It’s been a rough few days.” 

Then I thought if I only blog when things are good, then I am not being totally real about all of this, am I?  And maybe being “real” will show other EDS’rs or POTSIES that they are allowed to be human too.

So I’ll get right to the point. 

My neck and back hurt so I am stressing about if the prolo is working enough or not.  My POTS and therefore extreme fatigue have been giving me problems.  Monday was Kindergarten Round Up for NEXT year and I cried most of the day thinking I should be there….But there are no guarantees about anything.  I feel like my best is not getting me where I need to be fast enough.  I want to work.  I miss having control over these things.  I had to be in my wheelchair the other day because of the POTS weakness and fatigue.  It has hit me that NO, these disorders will not just go away if I work harder.  In fact, working harder often gets me into more trouble.  I miss having control over these things.  I want to be able to plan ahead but POTS and EDS are making that close to impossible.  I keep getting bad nauseous headaches because of my neck tightness.   The Florinef makes me retain so much fluid to increase my blood volume that I feel ginormous.  I want to TEACH.  I want my progress to speed up.  I want to run.  I want to be a Mom.  I miss having control over these things.

My brother is leaving.

I am not sure if the support groups I belong to are freaking me out more or helping me understand things more, since some things get me worrying and other things give me great ideas and resources.  I keep thinking about this story from the blog, The Positive Thinker’s Journal:

Once upon a time there was a bunch of tiny frogs who arranged a running competition. The goal was to reach the top of a very high tower. A big crowd had gathered around the tower to see the race and cheer on the contestants. The race began.

Honestly, no one in the crowd really believed that the tiny frogs would reach the top of the tower. You heard statements such as: “Oh, way too difficult!”, “They will never make it to the top.” or, “Not a chance that they will succeed. The tower is too high!”

The tiny frogs began collapsing, one by one, except for those, who in a fresh tempo, were climbing higher and higher.

The crowd continued to yell, “It is too difficult! No one will make it!” More tiny frogs got tired and gave up. But one continued higher and higher and higher. This one wouldn’t give up!

At the end everyone else had given up climbing the tower, except for the one tiny frog who, after a big effort, was the only one who reached the top! Then all of the other tiny frogs naturally wanted to know how this one frog managed to do it? A contestant asked the tiny frog how he had found the strength to succeed and reach the goal?

It turned out that the winner was deaf!

The wisdom of this story is:
Never listen to other people’s tendencies to be negative or pessimistic because they take your most wonderful dreams and wishes away from you – the ones you have in your heart!

Always think of the power words have. “There’s life and death in the power of the tongue”(Proverbs 18:21). Because everything you hear and read will affect your actions!

Posted By: The Youngs

So I ask, “Is it better to be a deaf frog or a hearing frog who can learn?”  Or maybe a one eared frog? 

I had my appointments with Dr. Rosen and Larry yesterday.  They tried to help me regain perspective and helped remind me what I DO have control over…Dr. Rosen and I discussed how with EDS and POTS as my sports now, it is not about working harder, but is about working smarter.  Larry gave me an Apollo 13 homework assignment that is due next month when I see him.  (I will post more about this later).  Oh, and I went through ALL their tissues in both offices.  I do not know what I would do without those two doctors.  After the past three days, I decided I am giving up crying for Lent. 

Allie, aren’t you glad I am updating?

My Aunt has really great timing.  She must have sensed I needed some talking off of a ledge because she sent me this song yesterday.  I have listened to it about a zillion and one times.  It is amazing how such little gestures can mean so much and make such a difference.  Thanks Aunt Mada.  I REALLY needed this song.  It is going to therapy with me tomorrow. 

All our dreams are gone
With a loss of faith
We’re still hanging on
For another day
It’s so hard to see
That it’s going to get better
And when will that be
It’s hard to say

We must believe
That if we give we will receive
Yes we must believe
That it’s going to get better

Don’t give up
Never give up
We won’t stop
Giving all we got

Now we’re breaking away
From what holds us down
This could be the day
That brings out the light
Now we’re marching on
With the will of never giving up
This time we’ll have won
Without a fight

We must believe
That if we give we will receive
Yes we must believe
That it’s going to get better

Don’t give up
Never give up
We won’t stop
Giving all we got

Forgive and forget
And don’t hold on to the bitterness
A fill with regret
We don’t wanna go there again
The glass is half full
So lets get it on with togetherness
And our number will grow
We will prevail in the end

Don’t give up, never give up
We won’t stop giving all we got
Don’t give up, never give up
We won’t stop giving all we got

Ahhhhhh…Thanks for letting me get it out.   

“Don’t give up, never give up, we won’t stop giving all we got…”   That part gets stuck in my head everytime.  That’s a good thing.

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