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!

 

 

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.

Daily Prompt: Catapult

So Wikipedia tells me that catapult means: to launch a projectile a great distance without the aid of an explosive device.  Hmmm.

My first thought was about all the Mythbuster episodes I’ve watched in the past and I wonder how many episodes had a catapult in it?

My next thought is:  Someone put me in one of these and catapult me to the moon.  I am done.

Please pray for me.

I am shocked with the judge’s decision.  I am shocked that living with 2 brain tumors and a rare hereditary cancer syndrome doesn’t call for any compassion, support, understanding, anything.  

The “advocate” told me yesterday that in reading the judge’s 23 page report of my denial, I told one of my doctors in January 2014 I was having hot flashes but wanted to work.  (I had a hysterectomy the month earlier.  I had to endure forced surgical menopause.  Of course I had hot flashes!  Plus, my brain was a hell of a lot different in 2014 than it is today.  It was better then.  Things were better then.)

So our trusted government servant made his decision (partly) on what I said over 3 years ago.

I guess I’ve learned to never tell my doctor anything.

 

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.

 

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.

Daily Prompt: Bitter

First off:  hahahaahahahaaaaaaaaaaaaaaaaa.  I love this prompt!

Second:  Happy Monday!

Third:  I am reading this book and CANNOT put it down!  I was up until 1 am this morning (gah!) convincing myself, “One more chapter.  One more chapter!”  Without giving away too much of a spoiler, I was going to be VERY BITTER if Orson got hurt!

So, onto the daily prompt:  Let’s expound on this for a moment…

  1. I have 2 brain tumors
  2. I had to have a hysterectomy to manage my uterine cancer risk
  3. I live at home
  4. I am not able to work
  5. I am overweight
  6. I had thyroid cancer
  7. My esophagus is lined with an innumerable amount of polyps that (may) or may not turn malignant one day.
  8. I could find many more but let’s stop there.

I am not writing those things for pity.  I am writing them out as they are my reality since July 18, 2011.  Couldn’t I be bitter?  Shouldn’t I be bitter? And to be honest, I think in the beginning of this new life of mine I was in fact very bitter.  I had big dreams!  I was going to have a career and a family and be a wife and a mother and and and and….but in fact, my life didn’t turn out that way.

Today I have my bitter days, but now they are more bitter hours.  (Progress!)

Some days  I wake up pretty bitter that I can’t go out with friends, I can’t work, I can’t be a mother, I am not an independent woman, blah blah blah.  But, I can better name these moments now, and I while I may entertain the thoughts for a short while (because my feelings are my feelings and I want to honor them) then I move on and distract myself doing something else.  Whether that’s exercising, walking, volunteering, cleaning around the house, helping my family, writing on my blog, taking photographs (which is my new LOVE!) etc.

I think it’s very natural and normal to be bitter about things in our life.  What’s important is how we deal with that emotion.  Please don’t let it eat you up inside.  We are in this together.  ❤

Daily Prompt: Knackered

Uhm.

I am at a loss.

For words.

That never happens.

Really.

What does knackered even mean?  Really and truly.  I don’t know.

Exhausted?  Twitterpated?  Irate?  Drunk? Flabbergasted? Living with 2 brain tumors?  (HA. I couldn’t resist putting that in there.)

I guess I will do some research and find out the meaning.  Thanks WordPress for teaching me the stuff today.

 

Daily Prompt: Avid

I am by no means a writer.  I use this blog to document my life since diagnosis, so I guess it’s more a journal, of sorts.  Not that there’s anything wrong with that!  But, I have always wished I could write well/better.  I like to do these Daily Prompts when I can to gain some practice.  Hopefully it’s improving my writing.

As a child, I was definitely an avid reader.  I remember being holed up in my room all weekend reading either these or these.  I probably didn’t see the sun on most weekends when I was a teenager. One of my best memories is going to the mall each month to get the next in this series! 


Then life happens and I kind of get out of the habit of reading.  Weird.  Books are in my veins.  I have worked at 2 different bookstores, too!

But lately?  Something has changed.  Since diagnosis of brain tumors and surgeries, reading has been much more difficult for me.  Not enjoyable.  Almost painful and completely irritating.  When I have to re-read the same paragraph many times, I just get so angry.  At myself, at my life’s situation, everything.

Thankfully I changed that mindset a few months ago.  I have picked up reading again with a vengeance almost.  I know how beneficial reading is, and I view it as physical therapy for my brain.

For the sake of my brain for now and the future, I am once again an avid reader.  I just finished this book and am now reading this one.

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Do you like to read? What would you recommend?

 

 

Through the other side

Well, folks.  I made it through the hearing.

I have refocused my thoughts since then to positive ones, but believe me, it’s very hard.

When I walked out of the hearing room I broke down.  From the pent-up emotions, things the judge said, my stress, everything.  I just lost it.

But, in the time that’s passed I keep reminding myself that: I DID MY VERY BEST.  There’s absolutely no point in rehashing what I “wish I would have said”.  I will hear the judge’s decision in 30 days.

I am repeating to myself a mantra:  “I am health.  I am wealth.  I am love” – which translates to: I don’t want breast cancer.  I want to be financially stable.  I want significant love in my life.

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Thank you everyone for your prayers and good thoughts.  I am envisioning success!