Daily Prompt: Disastrous

Looking back on my life, I would say the most disastrous day I ever lived through was the day I was diagnosed with a brain tumor.  (The anniversary of this event happened to be yesterday, July 18.)

Disasters happen.  This we know.

What’s the opposite of disaster?

This site shows many, many, many choices.  I just had the thought to print out each one of the words listed and place them all around my room.

Sound like a good idea to you?

Daily Prompt: Sail

At times, I wish I could sail off into the sunset.  To leave all my cares and worries behind me:  no more brain scans; no  more breast scans; no more kidney scans; no more colonoscopies and EGD’s; no more stress of worrying about the outcomes of the tests I must endure.  No more Cowden Syndrome and no more Lhermitte-duclos Disease discussion.  Ever.

Alas, life is not like a movie.  I don’t have that luxury around me, and to be honest, I really envy those that do.

But life is life.  And, it’s not a dress rehearsal.  This is my lot in life.  Call it bad or good, it’s mine and I must not ever give up.

 

I could really go without…

another person telling me the following:

“Wow.  You got denied disability?  I know tons of people with less than you who got approved.”

“In order to get approved you pretty much have to have a condition that will end in death.”

(It’s freaking 2 brain tumors.  How much more “ending in death” can you get?)

“Are you working?”

“Are you married?”

“Why aren’t you married?”

Please.  For the love.  Just stop.

I think it’s time

I realized this week – I don’t want to have a brain scan right now.  I had one in December.  I don’t want another one next month.

Also, I have pondered about a lot of things lately:

  • Why are the MRI’s so frequent? (About every 6 months)
  • Are they this frequent to help ease my anxiety?
  • Does the doctor want them this often?
  • There hasn’t been “significant” growth since 2011.  What does that mean?
  • Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
  • Why don’t I want to have this next scan?
  • Will there be (of course not) any significant change if I push the scan off 6 months?
  • Should I appeal the disability denial?
  • Should I refile?
  • Should I file bankruptcy?
  • Why can’t I catch a break?

When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep? 

Daily Prompt: Imaginary

When I was little I didn’t have an imaginary friend.  I always wished I did, though.  Back then I always wondered, “Where do they meet their friend?” – HA.  To be a kid again and have that thought be the extent of my fears:  how to meet an imaginary friend.

Alas.  Today?  So much is different.

Where to even begin?  How can I separate my fears from imaginary ones?  Granted, getting diagnosed with 2 brain tumors was such a kick in the neck:  I will never have any fear worse than this come true.

Having some distance from 2011 though, I can’t say I do much of imagining anything anymore.

.

.

.

.

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Er. Not to sound like I am on the pity pot; it’s sad because it’s true.

 

Eff my life

I have a virtual friend who has offered me her expertise, advice, support, on this whole disability mess.  (THANK YOU!)

I chose not to read the judge’s 23 page denial because it will only make me angrier and more suicidal.

My virtual friend was kind enough to read the denial for me.

In part, the denial states that I was “fine and happy” in the courtroom.  (I was trying to be professional and not lose my marbles.  I almost did cause a scene at the end and I held it together because I was afraid THAT would be held against me.)

Over the years I have told my doctors that “I’m fine”.  The judge held that against me in part of his reason to deny me.

(I have only told my numerous doctors “I’m fine” because I AM TIRED OF TELLING THEM ABOUT MY PAIN ALL THE TIME.  MY CONSTANT HEAD PAIN, CONFUSION, MEMORY PROBLEMS, FINE MOTOR SKILLS PROBLEMS, ANXIETY, DEPRESSION, ETC.)  But, that doesn’t mean over the 6 years since my life got turned upside down I never told ANY doctor I am in horrific pain?  I DID!

The advocate told me if I chose to appeal then my case would go back to the same judge.  My virtual friend said that in the denial it says that it may not go back to the same judge.

So kids.  If you’re in the process of filing to disability, don’t EVER tell any of your doctors that you are fine.  And, don’t find someone to “help” you online.

Despair 


You may think getting diagnosed with 2 brain tumors and a hereditary cancer syndrome is bad?

Try getting denied for disability.

This is actually worse.

I try really hard to be brave.

I really try hard to be strong.

You cannot survive without money.

I am broken.

What is the point anymore?

Approval would have helped me avoid filing bankruptcy. That’s now next on my to-do list. 

Every time I think about it I begin to cry.

Every thing I am feeling and thinking now is exactly what I feared would happen.

 

Guilt sux

I hate guilt.  It consumes me and eats me up inside.

I have so much guilt about burdening my mom; her being forced to pay for my daily living expenses that I cannot take care of.  (In addition to gas, car insurance, etc.)

Accepting my feelings of guilt, or rationalizing coping with them, or whatever is one of my biggest crosses to date.

But at therapy yesterday Dr. C gave me some perspective I haven’t reached on my own:

She said that guilt results from when you do something wrong.

I didn’t do anything wrong to be diagnosed with 2 brain tumors and a hereditary cancer syndrome.  I didn’t cause that.  I didn’t make a less-than-desirable choice and am now forced to live with the consequences.  I just have a “shitty” brain (her words).  And she asked me, “Would you rather have a shitty mom and a good brain?”

No.  No way no how no no no. No no no nope no.

I will take all the crappy things in the world because I have the best mom ever.

I got the better end of the deal then. ❤

Daily Prompt: Pursue

What do I pursue now that my life is such that it is?

Initially my plan was a career in education.  But, the brain tumors (and surgeries) have put a kink in that plan.

I know there’s more to my life than stress, financial ruin, depression, despair.

Where do I find the “more”?

 

 

 

 

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.