Daily Prompt: Trance; and also Depression is real.

I mean, it really does.  But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things.  I feel like when I have days like this (read: days that suck) I need to blame something:  (see my list of things above).  I don’t know why.

I guess because I hope I’m not just lazy.  I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.

Today, for example: I didn’t go to church.  I went on an “adventure” yesterday (my words) and I think I overdid it.  I just couldn’t clear the brain fog this morning.  I woke up and felt like I was in a trance.  So, I slept/napped a bit more. Did some reading.  Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices.  (Actually, I probably have many more but these are my main 2.)  I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.

More later.

Daily Prompt: Solitary

A quick search states that solitary means: existing alone, unaccompanied, alone, friendless.

And it’s funny that I find myself alone as I am writing this post.  Alone, except for my cats.  I am a very proud Cat Mom.  ❤

At this point in my life, or rather my CS life, I am unaccompanied at my medical appointments.  But you know what?  Just because I go to them alone doesn’t mean they are any easier to manage or bear alone.

I have just read a few posts on this prompt and much of what I read talked about being an introvert or extrovert and how to manage your life as such.  I don’t know what I would call myself actually, but I guess my point is I wish I wasn’t in this medical world alone.  It gets very lonely and overwhelming sometimes.

Medical world, Rare Disease world, Brain Tumor world, all of it.  I can seem strong sometimes, because strong is the only choice I have.

I’m mad

So, this post is just to get all this crap out of my head so that hopefully I can sleep tonight.

Welp.  I don’t sleep any other night, so why would tonight be any different?

LET ME BREAK THIS DOWN:

  • I have 2 rare brain tumors
  • I have a hereditary cancer syndrome called Cowden Syndrome
  • I had 2 brain surgeries and am currently experiencing issues/effects from having my brain scrambled a few times
  • Blah blah blah – I see a zillion doctors
  • I apply for disability 3 1/2 years ago
  • I GET DENIED for disability
  • I can’t work, I can’t understand and process things as quickly as I used to, etc. etc. etc.
  • Just a few weeks ago I found out about a job that’s in my field, PART-TIME, matches my degree area, pays INCREDIBLY, literally perfect on paper so I scrambled (ha!) and applied. I am very qualified for the job
  • FOUND OUT TONIGHT THAT I didn’t even get called for a damn interview for the position
  • ALSO, DO YOU KNOW THAT I CANNOT EVEN GET AN INTERVIEW FOR TARGET?!
  • What does God want from me?
  • One needs money in order to survive in this world!
  • Filing bankruptcy has been one of my worst fears since diagnosis and I have been able to avoid it.  Until now
  • I can’t work.  But, then when I find something that would be a STRUGGLE but do-able, I don’t even get a call to interview for it
  • I am a good person!  I have a degree!
  • What the hell is wrong with me and what I am I supposed to do now?  Sell my body on a street corner to make ends meet?

Daily Prompt: Toothbrush

This is a funny prompt, only because due to my deep depression I have struggled a lot with brushing my teeth.  TMI?  Sorry.  Realtalk?  – You bet.

A few years ago I finally made the move to an electric toothbrush and I haven’t looked back since.

AND, while I could go on and on about mouth problems and CS (but I won’t), I will say that I pretty much fault every dental hygenist I’ve ever met in my entire life.

I only found out LAST year there’s so much more to flossing!  GAH, I am embarrassed to admit that, but it’s true.  I thought flossing’s main  purpose was to remove any food that had lodged between my teeth.  I never knew it was to scrape off all the junk and buildup!

Such is my life:  Brain tumors, rare diseases, and learning how to floss properly at 44!  🙂

Enter Title Here on 7/27/17 and also, (GRAPHIC?)

I don’t really know what to say when I see pictures like this.  It makes my stomach hurt a bit.

But it’s me and who I am.  ❤

As I have written before, July is always a heavy and rough month for me.  Just because I ponder so much about where my life was and where I am now.  You can read this post as a refresher, but basically I was diagnosed with a 5 cm. brain tumor in my cerebellum on 7/18/11 and then I had a 13 hour brain surgery 7/27/11.  Then, I had another one a week later 8/4/11.

I know that people talk a lot about scars, what they mean, they give us power or strength to see what we’ve overcome, blah blah blah.  I don’t really have anything wordy or eloquent to say about this scar because to be very honest:  it just plain sucks balls.

I think the more I look at it, the more I talk about it or try to embrace it, it’ll be less taboo to talk about.  I read this tweet a while ago that (paraphrased) said:  You talk about your kids and your marriage and your job.  I don’t have any of that and I talk about my brain tumors and my fear of when I will die and what will happen to me.  I freaking love this tweet and hope you will be mindful of that if your friend has a medical situation they must address.

(NOTE:  Many times, at least in my experience, just because someone has brain surgery doesn’t mean the doctors were able to remove the entire tumor.  Please don’t just assume “Oh, they are fine” once they have recovered from their surgeries.  I believe in some cases a neurosurgeon can remove the entire tumor, but that didn’t happen at all in my case.  Plus, I have another smaller 2 cm. tumor that is encapsulated in my cerebellum.  One of my sincerest hopes is that my life after surgeries and with brain tumors can help educate someone about them and how to better support us.)

I am glad today is almost over.  Soon, or probably it should be already, July 27 will just be another day. I am working towards that….soon.

PS, if you’re on Twitter please follow #BrainTumorThursday.  Thank you!

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.

.

.

.

.

.

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

 

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.

 

Daily Prompt: Dash

The last few Daily Prompts have intrigued me and I have begun several blog posts.  But, each of them seem to be revolving around my medical status and remain in my drafts folder.  I know there’s something else to me besides medical everything.  Right?

So, in the spirit of acceptance I will dash to my next appointment and be back soon!  Happy 4th of July everyone. ❤

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.