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.

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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

Daily Prompt [Educate]

To be honest, I hope that my blog will help to educate (to anyone who will listen) about Cowden Syndrome and Lhermitte-duclos Disease.  Have you ever heard of Rare Diseases?

I began this blog Day 1, or rather Day 2; the day after I was diagnosed with a 5 cm. brain tumor in my cerebellum.  6 years later and I still don’t have the foggiest idea what I am doing.  🙂

But, I’m trying.   Thank you for hanging on with me!

PS:  Please check out my Teespring storefront while you’re here!

Daily Prompt [Dash]

The last few Daily Prompts have intrigued me and I have begun several blog posts.  But, each of them seem to be revolving around my medical status and remain in my drafts folder.  I know there’s something else to me besides medical everything.  Right?

So, in the spirit of acceptance I will dash to my next appointment and be back soon!  Happy 4th of July everyone. ❤

Daily Prompt [Qualm]

I admit I had to look up the definition of qualm.

And, now I can’t figure out how to use it properly.

  • Qualmy
  • I am feeling a lot of qualm this morning
  • Are you qualmed today?
  • Who’s needs help feeling qualm today?
  • The news is on TV. Do you have qualms about that?

UGH.  So, I don’t know how to use it in a sentence.  I’m thoroughly embarrassed to say that, but that’s OK.

Admitting is the first step to fixing the problem.  🙂

Daily Prompt: Bitter

First off:  hahahaahahahaaaaaaaaaaaaaaaaa.  I love this prompt!

Second:  Happy Monday!

Third:  I am reading this book and CANNOT put it down!  I was up until 1 am this morning (gah!) convincing myself, “One more chapter.  One more chapter!”  Without giving away too much of a spoiler, I was going to be VERY BITTER if Orson got hurt!

So, onto the daily prompt:  Let’s expound on this for a moment…

  1. I have 2 brain tumors
  2. I had to have a hysterectomy to manage my uterine cancer risk
  3. I live at home
  4. I am not able to work
  5. I am overweight
  6. I had thyroid cancer
  7. My esophagus is lined with an innumerable amount of polyps that (may) or may not turn malignant one day.
  8. I could find many more but let’s stop there.

I am not writing those things for pity.  I am writing them out as they are my reality since July 18, 2011.  Couldn’t I be bitter?  Shouldn’t I be bitter? And to be honest, I think in the beginning of this new life of mine I was in fact very bitter.  I had big dreams!  I was going to have a career and a family and be a wife and a mother and and and and….but in fact, my life didn’t turn out that way.

Today I have my bitter days, but now they are more bitter hours.  (Progress!)

Some days  I wake up pretty bitter that I can’t go out with friends, I can’t work, I can’t be a mother, I am not an independent woman, blah blah blah.  But, I can better name these moments now, and I while I may entertain the thoughts for a short while (because my feelings are my feelings and I want to honor them) then I move on and distract myself doing something else.  Whether that’s exercising, walking, volunteering, cleaning around the house, helping my family, writing on my blog, taking photographs (which is my new LOVE!) etc.

I think it’s very natural and normal to be bitter about things in our life.  What’s important is how we deal with that emotion.  Please don’t let it eat you up inside.  We are in this together.  ❤

Daily Prompt: Avid

I am by no means a writer.  I use this blog to document my life since diagnosis, so I guess it’s more a journal, of sorts.  Not that there’s anything wrong with that!  But, I have always wished I could write well/better.  I like to do these Daily Prompts when I can to gain some practice.  Hopefully it’s improving my writing.

As a child, I was definitely an avid reader.  I remember being holed up in my room all weekend reading either these or these.  I probably didn’t see the sun on most weekends when I was a teenager. One of my best memories is going to the mall each month to get the next in this series! 


Then life happens and I kind of get out of the habit of reading.  Weird.  Books are in my veins.  I have worked at 2 different bookstores, too!

But lately?  Something has changed.  Since diagnosis of brain tumors and surgeries, reading has been much more difficult for me.  Not enjoyable.  Almost painful and completely irritating.  When I have to re-read the same paragraph many times, I just get so angry.  At myself, at my life’s situation, everything.

Thankfully I changed that mindset a few months ago.  I have picked up reading again with a vengeance almost.  I know how beneficial reading is, and I view it as physical therapy for my brain.

For the sake of my brain for now and the future, I am once again an avid reader.  I just finished this book and am now reading this one.

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Do you like to read? What would you recommend?

 

 

Links of reference

If you don’t already know, I have a place on my blog where I’ve gathered links of PTEN/Cowden Syndrome information.  I also wanted to share that there is a PTEN Hamartoma Tumor Foundation website:  Please visit it often!

Thank you!

I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.