Daily Prompt [Blush]

Any tendencies I had to blush while hopping into my hospital gown are now gone.  I will strip naked in front of any nurse or doctor any day of the week.  That’s just what Cowden Syndrome and Lhermitte-duclos Disease have given me!  Shall I be grateful?  Not really.  But since I’m kind of a professional patient now there’s no need for me hesitate.  I will jump right in to get the business done.  No time to waste!

Oh, and by the way, speaking of waste, tomorrow morning I have my next colonoscopyI don’t like that I am high-risk colon cancer, and in fact I don’t like that I am high-risk any cancer.  It’s just what is today.  This is almost hour five of me trying to get the prep down.  It’s rough.  And I mean r o u g h.

Please send me good MOJO in the morning!  I really appreciate it.


Daily Prompt [Captivating]

I used to watch a lot of movies and I used to be a very avid reader.

Since my brain surgeries those hobbies have gotten pushed aside.

BUT, I just saw Coco and am currently reading Lightning and they are two of the most captivating movies and books (respectively) I’ve ever seen!

Rare Disease Social Media Tweetchat?

Hi guys.  Do I have anyone here that is on Twitter?  I am really interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases.  I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.

Please let me know if you would like to take part!  Thanks!


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.  



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!  ❤






What are you doing today?  



World Rare Disease Day 2018



Today was rough. It was a very, very, very long day. I am so glad to be home. I guarantee that tonight will be PJs and in bed by 7 PM. For realzzz.


However, some good things happened today also. I think I’ve mentioned that Rare Disease Day is next week, 2/28/18. I had some custom bookmarks made with my blog information and was able to give them to several people today. I am very blessed to know some very good people and they (happily – I hope!) accepted the bookmark as I gave them a quick spiel about next Wednesday. I feel that any time I can have a conversation with anyone about Cowden Syndrome or Rare Diseases in general, it’s a great thing!

(I usually don’t even mention Lhermitte-duclos Disease because it’s a mouthful to say!) 🙂


Daily Prompt [Constant]

No one should live in constant fear of a brain tumor growing or one day getting diagnosed with cancer.

No one should.  Ever.

However, I do.

My task is now managing fear of the unknown while trying to enjoy the life I’ve been given.


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 [Courage]

During my recovery from the brain surgeries someone told me, “Oh Heather.  You’re so brave.  I couldn’t do what you’re doing.”

Ugh, that comment still makes my blood boil, even years later.  I get that she was trying to be supportive or caring, but believe me that isn’t the way to go about it.

I am not brave.  I am not courageous.  I wasn’t climbing a mountain or swimming with sharks for Pete’s sake.

I was trying to not die.