What do you do when you can’t…?

For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today?  Eeeeeesh, that’s weird.  I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing?  Baha.  No clue.

I have some news that I am debating about sharing here.  You guys are the greatest and I know you’ll be supportive and happy for me! ❤

I decided to join a few books clubs and I am very excited to go to them.  I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is.  But, I know reading is good for my brain so I am thankful to have found my passion for it again.

I ordered the books online and can’t wait for them to arrive.  I’ll share them with you soon.

Fall is just around the corner; I cannot wait.  Which then leads to Christmas time which is brain scan time.  Blech.  Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick.  I wish I could tell you I am a pro now at these appointments, but haha, nope.

I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing.  It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.

Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing.  Not tonight though.

Oh one more thing.  Have you watched this showI love it so much I cannot stand it!

 

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Complaining changes nothing

And of course, I get that.  But, I don’t view my blog posts as complaining; I’m documenting.

My biggest fear is dying alone and I suppose that this blog helps me feel safe secure that my life has some value and since everything is forever on the Internet, haha, I won’t be forgotten.

Being single and alone, no children too, is weighing on me heavily as of late.

My brain surgery/tumors are causing me more grief, too.

I have run into walls more frequently, about fallen over several times, and since it’s summer that means it’s time for daily headaches.  Oh, joy. 😦

So, writing here about my life’s struggles helps me to feel validated.  I know I am not alone in my brain tumor life (or my Cowden Syndrome life for that matter.)

It is what it is.

I’m scared and anxious today.

Thank you for being here.

Daily Prompt [Flaunt]

I will forever think of this when I hear or read the word flaunt.

 

Daily Prompt [Sleeve] – AND THE EVER-LOVING SYSTEM IS BROKEN!

Hello.  My name is Heather and I would like to welcome you to my blog.  Today’s post is full of anger and bitterness; thank you for joining me!  🙂

I have no connection to the daily prompt except that sleeve reminds me of peeved.  Pissed.  Angry.  Furious.  Frustrated.  MAD.  Irate.  And, we will continue from here:

I have 2 brain tumors and a Rare Disease called Cowden Syndrome, which you may or may not know.  What concerns me more than CS is the brain tumors I have, called Lhermitte-duclos Disease, or Gangliocytoma.  I’ve already had 2 crainiotomies and am currently experiencing more symptoms that are annoying and down right scary.  A few years ago I applied for disability, appealed, had an “advocate” (and I use this term loosely because I got snowed and he is a terrible excuse of a man) and after almost 4 years of the entire process the Judge finally denied me.  Period.  End of story.  Do not pass go and do not collect 200 dollars.  In part, he denied me because I was “calm and collected” in his courtroom and after my hysterectomy in 2013 I told a doctor on my team “I wanted to go back to work.”  Ugh, thinking about this again makes me nauseous and I want to spit fire.

Since the outcome, and well actually since I started to feel any semblance of a normal life (probably around 2012) I have worked my ass off trying to find a job(s) so that I can surviveDo you know how expensive it is to LIVE though?  If you have a job, be grateful.  If you have money, be grateful.  Be grateful for what you have.

Anyway, a few months ago I found another part-time job that is flexible and they understand my health issues, the brain tumors, the good days and bad days, the daily headaches, etc.  I am very lucky to have found this job.  And, guess what?  I made “too much money” in April and May and will lose my state medical coverage the end of this month.  WHAT IS WRONG WITH THIS PICTURE?!

And as I was running errands earlier today I ran across the booths offering FREE CELL PHONES TO ANYONE (who qualifies, whatever).  WHAT ABOUT ME?  WHY do I fall through the cracks?  I will not debate immigration concerns, illegal or legal, because that’s not my job nor is that my concern today.  MY CONCERN IS ME.  MY LIFE.  MY FUTURE.  I AM AN AMERICAN CITIZEN AND GETTING DIAGNOSED WITH 2 BRAIN TUMORS HAS DESTROYED MY LIFE.  WHY AREN’T I AS IMPORTANT AS OTHER PEOPLE?????????????????????????????????????????????????????????????????????????????????????

May is brain tumor awareness month.  Brain tumors are evil bastards that ruin lives.  Mine, included.  Please visit these links to find ways you can help.  Thank you ❤

National Brain Tumor Society

American Brain Tumor Association

Global Genes

 

 

 

 

 

 

Daily Prompt [Suddenly]

There are about 18 different directions I could take this prompt.  However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?

If we go back to the beginning, see this post about what led me here.  (Boy, I just took a few minutes and re-read those posts from the early dark days.  My anxiety is full-bore right now…I am so thankful that time of my life is over.)

Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also.  It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two.  HAHA.

Yet, life doesn’t roll like that for me.  I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry.  This month I have a lot of medical procedures and I am already nervous about them.  I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week.  I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.

Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again.  I tell the doctors every time that I need to be sedated before going in.  Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under.  And that sucks eggs.  Bad.  I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in.  He got it!  Please keep your fingers crossed that it will be smooth sailing.  🙂

I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.

The last week of March I have the breast MRI.  I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.

My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease?  What’s Cowden Syndrome?  What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it.  I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.  

 

Daily Prompt [Messy]

Oh my.

How appropriate today’s daily prompt is!  As I am pondering this early Saturday morning a few things keep going over in my mind:

  • Bedroom
  • Life
  • Car
  • Life
  • Hair
  • Life
  • Clothes
  • Life
  • And
  • On
  • And
  • On

Life is messy.  It just is.

What matters is what do you do with it, right?  I know I say that often, but I want to keep reminding myself that although my (medical) life is out of control, and that directly affects all other areas of my life, I am still here!  I can and should still exert control (my choices, rather) on what I do and do not want to do with my life.  My bedroom is a hot mess.  My closet is a hot mess.  My hair is a hot mess.  My car is a hot mess.  I guess I just have embraced the messy because I feel that’s a representation of my life.  (!!!!!!!!)

Gosh, who knew that blogging could be such great therapy, LOL.  That’s exactly it.  I’ve been absorbed into the mess that is my life and cannot find a way out of it.

YET, I do have a choice!

Even if it’s as simple as reading a good book.  Or listening to music I enjoy.  Or cleaning out the trunk of my car.

Cowden Syndrome and Lhermitte-duclos Disease robbed me of the life I hoped and dreamed to have:  Mother, wife, blah blah blah.  When you have no dreams or hopes and feel your life is a mess…ew that’s just too much for any one person to handle.

I am reminded I only have to “handle” today.  I will finish this blog post and and start on my laundry.  Then, I will make sure I make time to pick up this book that I have been trying to finish for years!

Thank you for being here!  ❤

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What are you doing today?  

 

Daily Prompt [Present]

In this present moment I should be getting ready for church and pondering my Primary lesson.

However, after reading a few of the other blog posts this morning on the Daily Prompt I am now thinking about how difficult it is for me to be stay acknowledge the present.  My mind is flooded with moments before being wheeled into operating rooms, moments after having a CT scan, basically moments in the past.

I see it clearly.  I know what needs to be done.  I just don’t know h o w to do it.  How to get out of the past and into the present.

Daily Prompt [Insist]

I’ve read different blogs for about 30 minutes this Saturday morning.  Trying to understand what I am feeling, or at least distract myself from what I am feeling.

Some mornings I awake and think to myself, “I should write today.  There’s so much anxiety coursing through my veins, I need to get it out.  I need to cry, scream, rant, process it all here.  I am actually quite nervous about my breast MRI next month.  I wonder if this will be the day I get the news?  Will I hear the “C” word that day?

Then I have my consult for my colonoscopy and EGD this month.  My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see.  So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them?  OH, I CANNOT PAY THEM.  That’s right.

And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy.  And, I had 2 job interviews these past 2 weeks and didn’t get either job!  What gives?  Why can’t I catch a break?  My life sucks and I cannot get my head above water.  I feel like I am drowning, literally.  I don’t insist on much.  Really.  And now, I don’t hope too much either.  I’m tired of the stress. When will it end?

Whoa.  As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”

Daily Prompt [Viable]

Here’s the dictionary.com definition of viable Capable of living.

To be honest, since being diagnosed with 2 brain tumors and Cowden Syndrome, I do not feel capable of living.  My life now (financially speaking) isn’t practicable or workable.  I don’t have the capability to grow and develop because I have no money and keep postponing bankruptcy.

I could write every day about how destitute I am.  I know I could also write every day about my blessings and hobbies (my Wordless Wednesday posts) – but my blog is my safe space.  It’s my place to cry, scream, bitch, moan, whine, wail about being broke, alone, scared, terrified of my future, blah blah blah.  About being pissed off that my life continues to be a struggle.  About wishing I could catch a break.  About hoping I can have some good things happen for me.

I want a viable existence and Lhermitte-duclos Disease (at least) robbed me of this fact.  I’m so tired.

Daily Prompt [Miraculous]

While I get caught in some deep depression most days, I know there are many miracles in my life.  I could dedicate an entire blog to them.  However, not today.  I want to focus on my healing since my brain surgeries.  I know it is nothing short of miraculous that I am alive today and able to walk.