One week 

Tomorrow is 7 Day post op. I’m home from the hospital! Thankful and grateful for my healing. More soon. 

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Daily Prompt [Believe 10/9/17]

I believe in the person I want to become.

I don’t quite see her, yet.

But, she’s near.

 

PLEASE NOTE:  Don’t forget to check out my teespring store and see ways you too can help advocate for Rare Diseases.  ❤ thank you!

Daily Prompt [Recreate]

There are several moments I wish I could recreate:  my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.

I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.

Daily Prompt [Traditional]

I always hoped for a traditional life.  Marriage to a good man, children, a dog or a cat, I would have a career that offered something to the world, security, support, teamwork.

About 6 years ago this hope was destroyed.  I am now dependent on others, unable to work, don’t have a career or security, cannot take care of myself.

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Yet as I am reading this post now, why can’t I still have those things?

 

new!

Check out the new custom t-shirt I just created!

Take a look at my entire store here.  What other items would you like to see?  I am doing all I can to be financially independent.  Please consider buying a shirt if you can.

Thanks for looking!

 

 

Lost 

I’ve lost my way. And my hope. 

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I’m struggling but trying to find my way back. 

Alone 

Being alone is one thing. 

FEELING alone is something entirely different. I’m still broken about the judge’s decision. I have no hope. 

I sure wish my dad were here so he could give me a hug. 

My head (from 4/9/14)

When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head.  (To me)  I only see my head.  I only see it bandaged.  I only see me, laying in the bed alone, because I was the only one who was walking through this experience.  I remember my mom wanting to take a picture of me and I flat-out refused.  A picture of this? Of this moment?  Why?  Who wants to see this? Who would want to even remotely remember this moment in time?  She took this picture the night before the first brain surgery.  But she didn’t give up.  In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera.  I didn’t want anyone to see me like this.  I think the picture made it too real.  The camera made it too real.  Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.

I have more pictures of after surgery.  The incision, its healing.  I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures.  I didn’t really identify, or know how to identify, with that person.  The person who had their skull opened twice.  The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis.  In my defense, I know I’m better than I was.  And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.

Edit 5/8/17:  I was going through my Drafts folder and found this post.  So funny how this post brings up so much anxiety even from 3 years ago.  I am so thankful I have this blog to document my life.

Quiet

I know I have been pretty quiet here as of late.

I wish I could say it was because I had nothing to write about.  Unfortunately, that’s not the case.

Next week is my disability hearing.

I have worked so hard to stay positive and hopeful.  It’s a moment by moment deal for me.  I find ways to distract myself when I start to stress out about what’s going to happen before the Judge.

Working on keeping my head down and plugging along.

I’ll be back very soon.