Daily Prompt [Shock]

First off, HAHAHAHHAHHAAAA.

Secondly, this prompt is pretty accurate considering my mood today.  I just spent $50 to fill up my gas tank, and my monthly credit card payment is now up to $250/month.  Will anyone else be shocked when I cannot pay the bill anymore?

Thirdly, I could actually make a list filled of all the things that have shocked me these past 7 years.  I won’t bore you with it though.

I’m sick.  I’m pissed.  Why couldn’t I have been approved for the damn disability?!  I deserve it!  I need it.  I am entitled to it!  I’m tired of complaining and I’m tired of struggling.  All I pray for is financial stability and yet (if I live another 30 years) I don’t ever see that happening.

When I file bankruptcy, or am forced to file, that will only be a short-term fix for a lifetime problem.  I can’t work as I once did.  I can’t even make enough money to finance my life – the bare necessities even.

I don’t want or expect anything more than just surviving.  And as it stands right now I’m barely doing that.

I’m pissed.

I never asked for these damn brain tumors (obvi) and they continue to ruin my life.  How can I expect to heal when I’m chronically stressed out about how I will survive?!

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Daily Prompt [Static]

Static cling? Static on a radio station? Static in my hair?

Who knows.

But, I can definitely say that my life hasn’t been static these past several years.  The Internet says that static means lacking in movement, action, or change.  My entire life has changed!  My life now is moving in a direction that (still) paralyzes me with fear some days.

Brain scans, appointments with Endocrinologist, needing to schedule next colonoscopy and EGD, meeting with Therapist, figuring out how long I can avoid bankruptcy, and it goes on and on and on…..

Cowden Syndrome and Lhermitte-duclos Disease doesn’t give its folks a break!  Your life will never be static again.

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PS – Since you’re here, will you please visit my teespring.com site and consider buying a custom t-shirt supporting Rare Disease Awareness?  Thank you! ❤

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 [Cozy]

I love today’s prompt!  Whenever I hear the word cozy I envision tons of Christmas blankets on my bed with my cats nuzzled inside. (I literally have 3 throws on my bed at this time and I want to go burrow myself in them right now!)

Happy New Year everyone!

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While you’re here please take a moment to visit my GoFundMe and Teespring sites.  Thank you! Your support means so much to me. ❤

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.

Daily Prompt [Inheritance]

Welp, thanks to Cowden Syndrome I don’t have any children to leave an inheritance.    This whole idea weighs heavily on me, too.  Will anyone care when I’m gone?  Will anyone want my small about of jewelry I have or will that be buried with me?

It’s about that time

Tomorrow morning I have my next brain scan.

Part of me feels like I just had one yesterday, and the other part of me feels like it was 10 years ago when I last had one.  Such mixed feelings!

It doesn’t get any easier; it’s just different now.

Daily Prompt [Knit]

When I first read the prompt for today, I thought about how much I love to crochet and yet I always wish I had learned how to knit.  I would imagine my Mom probably knows how, but who knows.  I do know that my Mom taught me how to crochet and she learned from her mother.  I have made tons of afghans throughout the years, but unfortunately don’t have access to photograph them.  I think they are shoved in the attic, but wrapped up of course.  🙂

If I think about learning to knit now, I get filled with anxiety.  So lame, but it’s true.  I can feel my tension rising even as I am typing this because my damn fingers don’t work like they once did.  I am only in my mid-40’s for Pete’s sake, but because stupid brain tumors things just aren’t as they once were.

Sigh.  I have the itch to create so I will continue editing photos as that is really enjoyable to me.  Check out my Wordless Wednesday posts to see some of my photos.

And please don’t forget to visit my teespring store as I am struggling to survive post diagnosis and am looking for ways to raise money.  Thank you! ❤

 

On a walk

I’m trying to kick up my exercise again, because surgery last month put a wrench in things.

Thankfully, crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)

I felt like a normal person!  Albeit, for about 15 minutes.  But, still I’ll take it.

Because then I remembered I have my brain scan next month because gangliocytoma.  And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.

I guess this is part of what life entails, right?  Little moments of breathing in between the big stuff. 

Or in my case, the big brain stuff.

doub8m0w0aa-nvc

 

Daily Prompt [Release]

I’m not a poet. I’m not a political blogger.  I’m not a writer or scholar.

I’m just a person trying to make sense of their life.  A life filled with brain tumors and Rare Diseases.  A life full of fear of the future, yet very thankful for the roof over my head today.

I’ve learned many things since diagnosis.  One of the main ones is as follows:

In order to embrace fully your future, you must release your past.

My hope is that we can all learn how to do this, before it’s too late.

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NOTE:  Please click here to see my storefront.  You too can help raise awareness for Cowden Syndrome.  Thanks!