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.

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I was thinking about trying today’s Daily Prompt

But as I looked at it and read a few blogs, nothing is jiving for me.  I could write a short post on the time I met Mr. T, or Sylvester Stallone, or Loretta Lynn and Mickey Gilly, or Brad Garrett.  But meh.

What I will write about this morning is how much anxiety sucks.  I mean, really and truly sucks.

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For those of you who suffer with anxiety what are some quick life hacks you turn to for help?  Please share in the comments.  Thank you.

 

 

What’s this all about? Where is this coming from?

Something is coming up for me lately.  And, I don’t like it.

This morning I went to volunteer at an event.  I committed to this several months ago and knew (prepared mentally) for it ahead of time.

I realized about 3 hours in that I was “done”.  My brain, my body, my entire existence was finished.  I needed to leave and get home immediately.  These episodes are happening more often.  My side effects of brain tumor/surgeries (shaking, losing my balance, almost running into things) are increasing and it’s making my anxiety worse.

But, why, for the love of all that’s good and holy, do I feel this need to overshare?  I must have said it several times in the last 48 hours, “I have a medical condition…” and then explain my feelings or my dang life to them.  NO ONE CARES HEATHER!

MY BRAIN TUMORS are really no ones business and it’s my decision (obvi) to tell whom and when.  Normally I have no filter when it comes to my brain stuff, but it hit me quite poignantly as I left the event:

WHY do I feel the need to overshare?

WHY do I feel I need to explain why I am tired?

WHY do I even think anyone gives a flying crap why I am doing anything?

WHY am I only realizing this now?

WHY is my ego so involved in this?

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“I need to leave.” is a complete sentence.  Period.

I suppose I feel judged.  I suppose I feel less-than.  I suppose I still haven’t fully accepted these brain tumors/effects and I feel like something is wrong with me (well, it is.  But you know what I mean…)

 

 

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 [Vague]

I have a vague recollection of wanting to write something brain tumor-ish these last few days.  Of how I feel so silly most of the time because I nod along with people as if I have a clue what they are talking about.  When in reality, I have no idea.  When will I be found out? When will others know I am full of crap? When I get clarity on a situation when I had no idea I didn’t understand it from the startFRUSTRATION times infinity.

Sometimes, I feel like Joey in that Friends episode with the encyclopedias.

 

Daily Prompt [Song]

At some point in my life I believe I carried a song in my heart.

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It’s not there anymore. 😦

 

Daily Prompt [Disrupt]

My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling.  Trying to find my balance and inner strength.

I am so very thankful to have gotten through these last few months relatively unscathed.  🙂  The EGD and colonoscopy was rough, but completed.  And then breast MRI was “easier” than I remembered!  The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it. 

Also, I haven’t received a telephone call from my oncologist.  I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.

Today I have errands to run, appointments to complete, and blood to be drawn from my arm.  I best get going and I hope you all have a great day today!

Daily Prompt [Toxic]

Since my diagnosis in 2011 of Cowden Syndrome and Lhermitte-duclos Disease, I seem to have fine-tuned my toxic meter for people in my life.

Either people who were in my life and no longer are, or those in my life that I literally run from.

I know what to do now.

Daily Prompt [Swallow]

During church this morning I experienced an upsetting emotional moment which made me swallow hard and really take a look at things in my life right now.

I have a calling in Primary and I love this time so much.  But I especially love Singing Time as I was inactive as a child and missed it all.

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I don’t want to be known as the girl woman who’s “So good with kids”I wanted my own children!  

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I found myself talking with some kids this morning as we were singing songs and I was overcome.  Tears began to flow.  (I’ve written and then deleted the same line for 5 minutes here.  I don’t know what to say next!) – I’m feeling so sad and dejected and hopeless this morning.   I wanted to be a mother more than anything.  I know that even if I didn’t have Cowden Syndrome I still may not have had children, but still. Being around children is not the same as having a child. Your own child.

It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.

To any parent who is frustrated with their children at any moment of any day: Always remember how blessed you are to have a child.  Never forget that.  Please.

update

Hi everyone: I made it through the colonoscopy and EGD! It was a rough time; I’ll be very honest. So glad it’s over and now can move on to the next appointment on my calendar.

The GI doctor (whom I love!) biopsied 4 polyps in my colon and told my mom that my esophagus looked even BETTER than before! You may recall that my esophagus is “carpeted” with polyps and a few years ago I was referred to a specialist as there was talk about an esophagectomy at some point.  You can read about that fun time here.

GAH.

I’ll take this news as a small win and will be in touch soon.  ❤