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.

.

.

.

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.

.

.

.

.

.

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

 



 

Hey everyone!

Why does the word “everyone” look weird to me?  Like I spelled it wrong?

Anyway.  I just wanted to check in with you.  I know I’ve been a bit sporadic with posting.  Some days, my life is pretty basic and boring:  I go to the gym and read (true story).  Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story).  I try to stay busy and distract myself with things that are beneficial for my mental health:  I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.

Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes.  Nevertheless, it’s mine.  My point of writing is that this week I finally have my disability hearing before a judge.  To say I’m terrified would be an understatement, you know?  I have this weird feeling in my chest:  Anxiety, obvi.  But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday.  Literally.  And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head.  Like, what is the purpose of my life since then?  It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along?  What will this judge think?  Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?

I pray that there is.

I’ll be in touch soon.  If you have any extra prayers, please send them my way, and to the judge too.  ❤  Thank you.

2016 in review

I just did my taxes and I have to pay $607 in Federal and $120 in State taxes.

I am in shock.  And probably denial.  Is this really happening?

For anyone who’s heard lately of the GoFundMe scams, I assure you this isn’t a scam.  My life isn’t a scam.

My life is a mess.  My life is out of control.  My GoFundMe isn’t a scam.  Please believe me.

I think it’s time to look at bankruptcy.

 

EFF YOU COWDEN SYNDROME. 

EFF YOU LHERMITTE-DUCLOS DISEASE.

 

I hate you both so much.

With humble thanks

I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet.  I do try to focus on the positive, yes.  But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day.  (I’m not discounting the hardships other people face.)

But, I digress.

Trying to steer this post from being “too ranty”. hehe

Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related.  Someone reached out to me and suggested I get in touch with this organization.

I got on that in a hot second.

To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way.  My life is hard.  I’m alone.  I’m managing my life as best I can but forced to depend on my family, which is limited at best.  How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.

Anyway.  I contacted Mission 4 Maureen immediately.  By their grace, I was granted financial help.  Thank you Mission 4 Maureen!  Thank you for what you do to help those of us living with brain tumors.  And, I ask you dear readers:  Please visit their website.  If you do Facebook, please consider “LIKING” their page and support them in any way can.

I thank you sincerely.

 

I’m just plain sad

Years ago, I started to accumulate items for my Hope Chest.  Now, granted, I didn’t have one (nor have I ever had one),  but I sure wanted one.  And, I sure wanted the items that you’d store inside it.  Slow and steady, I started gathering items I was sure I’d need one day: baby clothes.

Well, today I stumbled across said items in a bag shoved under my bed.  Onesies, Christmas baby socks, newborn Halloween clothes.

And my heart broke a bit.

I realized that pretty much the only dream I ever had will not come true.  Cowden Syndrome robbed that opportunity from me.  Even if I just had the brain tumors, maybe I could have been a mother.  But, since Cowden Syndrome is a hereditary cancer syndrome, (Note:  Cowden Syndrome isn’t listed on that link.  #FAIL) there were outstanding odds I would pass this condition to my child.  (Even if I had had prospects for marriage, but that’s another thing entirely.)

But, I guess my point is:  I thought I had pretty much resigned myself to this fact.  The chance for motherhood will never be mine.  (The Chance).  No guarantees, I get it.  No way to know the future, sure.  But, even as I eked out my late 30’s, I still had a tiny bit of hope that I could be a mother one day.

So, in pondering about this tonight…I guess I am OK.  I thought I had done well with this whole thing, but seeing those baby clothes this morning brought up some angst that I had hoped was well hidden.

It wasn’t.

I’m sad.  I’m lonely.  I’m alone.  I’m just plain sad.  Sad that I know what Cowden Syndrome is.  Sad that I know what Lhermitte-duclos Disease is.  Sad that this is my life.

I’m only acknowledging this here.  I try to put the hard, nitty-gritty stuff here.  And, then get up and take care of business.  Volunteering, continuing strengthening my spiritual self, living my life the best way I can.

Sleep will be good for me.  Tomorrow is a new day.

I will work hard on leaving the sad here.

Goodnight.

 

 

For the record

Once you get diagnosed with a chronic medical condition – you see who your true friends really are.

(Or aren’t, as the case may be.)

.

.

.

.

.

.

.

EDIT:  This post in no way reflects my feelings towards those special few people who have donated to my GoFundMe account these last few days.  I am very grateful to you all.  Thank you. ❤

What defines you?

I have a tweet pinned on my Twitter profile that’s been weighing on me lately:

“Brain Tumors don’t define me”

But, you know what?  They DO define me.  As much as I struggle against them, they do.  Just about every waking moment I’m reminded how they have defined my life.  Can you guess how?  Not by the numerous doctor appointments.  Not by the many scans and procedures I now endure.  They define me because of my dire financial situation.

If I was able to keep maintain a job of some sort and had some income coming in, it’d be easy to be defined by something else.  I am a friend.  A daughter.  A sister.  An Aunt who just happens to have 2 brain tumors and a rare, genetic condition.

How do I find meaning in my life now when I can’t take care of my needs?  I am racked with guilt every moment of the day that these brain tumors forced me to beg for help.  (I guess I should look at it a different way instead?  That these brain tumors forced me to be humble?  I guess I wasn’t humble enough before?)

Why did major brain surgeries have to force me into submission? Today, I can’t pay for gas for my car or much needed clothes (my socks have holes in them) or even $900 to fix a crown that broke a few days ago.

Can anyone understand how my life is ruined now?  Credit cards are maxed out.  My retired-mother is forced to pay for my daily living expenses.  How can I see or hope for change?  Can anyone understand how these brain tumors DO define me, yet I want so much the opposite to be true?  I want to enjoy life.  Is that too much to ask?

.

.

.

.

.

.

.

So, I’ll ask you instead.  How do YOU define yourself?

 

Stable is as stable does

I have had a rough few days.  Not sure why; not sure what triggers them.  I have to accept the bad days, along with the good.

So, I had my brain scan a few Fridays ago.  Saw the neurosurgeon the following Friday.  Stable.  Stable.  Stable.  In fact, the radiologist said “Grossly stable.” GREAT NEWS!  If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?

Although I struggle with wanting needing to know everything about the brain tumors.  Has there been minimal growth?  MRI’s aren’t 100% accurate.  So, how much are we off?  When will I be told there IS growth?  When will the “MRI’s not 100% accurate” show growth? Does that make sense?

I know I must accept the stable.  And, don’t get me wrong – I do.  But these dang brain tumors keep me up at night.  Sometimes I can’t believe I have 2 brain tumors in my cerebellum.  Why me?  What did I do to cause this?  Why do I have 2 tumors? Blah, blah, blah.  Same story, different day.

So, I got up this morning and went to the gym.  I try to combat the bad days with something good.  Something different.  Something outside my comfort zone.  Putting stability into my life where I can.