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.  

 

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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.

Daily Prompt [Patina]

As I read through a few blogs earlier, my thoughts were, “What exactly is patina anyway?”  When I first heard that word, it was from a Facebook group of people who love Dooney & Bourke.  Many people would say, “Oh, my bag has a lovely patina.”

I only assumed it had something to do with the leather handles or edge of the bag?  Discoloration?

I still actually really don’t know, to be honest.  🙂

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?

On big heads

I didn’t want to do much ranting or complaining as of late. Because news. Yet, I have this blog and continue to share because I hope I can educate ONE PERSON about Cowden Syndrome who might have never heard of it before me. (Like the technician who did my mammo who’d worked in healthcare 20+ years who’d never heard of a PTEN mutation.)
ANYway…

One of the signs or symptoms of CS is a large head, macrocephaly. (NOTE: I can’t tell you how many times Post-diagnosis I’ve asked my Mom, “No one said I had a big head? No one made mention? Anyone? Nothing?”)

I can connect the dots in my past NOW, of course, never finding a hat that fit right, etc etc. Never thinking it was a sign of THIS!

Moving on: I have to now use a sleep mask. I’m not mad about it, I really actually love it now. However, what I AM kinda made about is this Disney sleep mask doesn’t fit! I’ve tried it a few nights already and my temples/forehead pulse and I can’t sleep. This wasn’t a KID sleep mask! It was marketed/packaged as ADULT, meaning one size should fit ALL.

#KTHXBYE