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! ❤

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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?

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

 

Never say never

I’m having surgery tomorrow.

You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery.  Never ever.

And, yet here we are.

For the record, thankfully it’s not on my brain or my breasts.

It’s time to say goodbye to my gallbladder.

 

Catch you on the flip side friends!

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!

 

Daily Prompt [Express]

I don’t express myself well.  In fact, I never have.  Either written or verbal, it’s just a mess I struggle getting my thoughts out.

So, maybe you’re thinking, “Well, then why did you create this blog?”

In looking back over these 6 years I realize it was to give meaning and purpose to my voice; my life with 2 brain tumors and a Rare Disease called Cowden Syndrome.

I believe

Some of you may know I attend the  Church of Jesus Christ of Latter-day Saints.  It has been a huge part of my life for actually – most of it.  I have several generations of Pioneer Ancestors and am thankful and grateful to have that heritage in my life.

When I began this blog years ago, I did have faith and knowledge of our Savior and His role in my life.  It had been tested over the years, or granted, I had been tested.  Nothing on par with getting diagnosed with 2 brain tumors, but you get my drift.

Yet looking back, I truly didn’t understand anything.  I don’t feel I ever was truly mad at Heavenly Father once I got diagnosed, I just was pretty bleh about my life and everything that came with it.  I just didn’t care.  About anything.  Not anger just indifference. I didn’t care.  Period.

Fast forward through years of therapy, life, writing on this blog, etc. I am glad I can now ponder about that time in my life.  I am so happy with my decision to start this blog so that time of my life is documented in this small space on the Internet.  What I was thinking/doing/feeling/wanting/fearing at the moments of getting diagnosed with a brain tumor and subsequent Rare Disease of Cowden Syndrome are emotions I don’t like to recall often, but glad I can review them if I want to.

Every 6 months my church has General Conference, where the Leaders and Prophet counsel us.  It is quite a momentous event and I have been blessed enough to attend 2 (3?)  times in my life, once in the Tabernacle and once in the Conference Center (when it was dedicated!).  I attended church yesterday and I suppose this is why this is on my mind to write about.  I feel renewed that I have this faith and knowledge I can always rely on, it is always there for me, if I choose to embrace it.  I cannot ever deny what I know to be true.

Over the last few months I started this habit (I guess it’s a habit, although maybe a goal is a better word?) to choose a Conference talk to listen to each day.  There is no rhyme or reason to my choosing.  I open the app, scroll to a year (today’s was 2004) and then click.

Today’s Conference talk is Believe by Sister Dalton.

This is all coming full circle for me and I am grateful to see the connection.

It was just what I needed to hear today and I would like to share it with you.

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Do you have any daily habits or goals you work on achieving?