#SocksForScanxiety

I’ve made that my thing over the years: Every time I have a brain scan I treat myself to new fun socks!

This year’s pair is an early Christmas gift from one of my BFFs.

(Can’t sleep. Stalling. Putting it off.)

Tomorrow will be here before I know it. Come what may!

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Merry Christmas ⭐️ 2017

Taking Stock (Christmas 2016)

I’ve borrowed this from This Mom’s Gonna Snap a few times and wanted to do one more before 2016 is up.

Making: My bed.
Cooking: Does helping my mom make Christmas goodies count?
Drinking: A Skinny Girl Protein drink.
Reading: The Lucky One by Nicholas Sparks.
Trawling: The Internet for a Harvey’s Seatbelt bag. (I can dream, right?)
Wanting: To be healthy.
Looking: For a way to not feel like a frump for 2017.
Deciding: If it’s time to downsize some clutter in my room.
Wishing: I could go to Disneyland. Or, to be honest, Disneyworld.
Enjoying: Quiet mornings.
Waiting: For my head to clear.
Liking: Donny Osmond Christmas music.
Wondering: What Christmas Clearance deals I can find.
Loving: Grace and Frankie!
Pondering: Where I will be in 40 years. Alone? Healthy? What will the brain tumors be doing?
Listening: To the wind gusting outside.
Considering: How I can make 2017 my best year?
Buying: Healthy foods.
Watching: Days Of Our Lives
Hoping: For good health.
Marveling: How quickly Christmas flew by!
Cringing: About how people are willing to sever relationships over differing politics
Needing: To go for a walk.
Questioning: How people can abandon their animals.
Smelling: Lavender lotion.
Wearing: Christmas socks!
Following: More bloggers who champion Rare Disease Awareness.
Noticing: I need to up my water intake.
Knowing: I have a few thank you cards to write this week.
Thinking: About how I will incorporate more exercise into my life.
Admiring: How strong people living with Cowden Syndrome are!
Getting: The itch to travel somewhere.
Bookmarking: More books. I love the Goodreads app!
Disliking: Clutter.
Opening: More books!
Giggling: At myself.
Feeling: Sleepy.
Trying: To not miss Halloween at Disneyland too much.
Hearing: The TV.
Celebrating: My birthday soon!
Pretending: That my life isn’t as hard as it as sometimes.
Embracing: Quiet. Rest. Family.

Healing (Photo of the day 12/20/13)

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  1. Today is Day 9 since the hysterectomy.  WOW.
  2. I never knew how wonderful it is to have 15+ staples removed from your abdomen. Pure bliss.
  3. Nephew #2 said a few days ago I walk like a penguin.
  4. Today I walked to the end of the block!
  5. I can breathe into this doo-hickey and get the thing-a-ma-bobber to 1000. Whew. Without even breaking a sweat!
  6. Norco + Ativan = perfection.
  7. I’m not at the “book-reading” stage yet. Hope to be next week. Heck, I need to be at the “room-cleaning stage” PRONTITO!
  8. Found these neat app today called “Jingle Radio.” Check it!
  9. My bedroom has bags of Christmas presents all around.  AND, I haven’t even had a moment to break out my MK bag that I got on Black Friday! (Ladies: those of you in the know, stay tuned!)
  10. I had some amazing nurses in the hospital who really made a positive effect in this surgery experience for me.  I’m going to prepare some gifts for them to show my gratitude as soon as I’m feeling better.  Nurse Z told me during one of my overnights at the hospital, “I’m here to help you.” HOW AMAZING IS THAT?!  Now, I also met a crabby pre-op nurse who said something rude & offensive to me as she’s poking around my arms to find a vein (but I will leave that story for another post.) Very small woman who should not be in the medical field. But I’m going to focus my energy & gratitude on Nurse Z and CNA E. Really incredible people. They were fantastic and I will tell them so ASAP.
  11. I really want a juicer.  One of those Brevell types or something like unto it.  I have been drawn to them for the last few months but don’t know where to start, price wise, etc.  Does anyone have any thoughts?
  12. When I can’t sleep I read blogs.  It’s 12:45 AM.  Why am I still awake?
  13. What is the best way to stop writing in the passive voice?  I cannot tell you how much time I spend editing posts to fix said things and I cannot do it.  HELP!
  14. Watched Home Alone tonight with my family.  That is by far, my favorite Christmas movie, ever.  And, I had to think of one more thing to write about because I could not end on “13″.
  15. EDIT:  The formatting on this post bugged me so much I had to re-do it today (12/21/13).

Hysterectomies are hysterical!

Well.  They’re actually not.

But what do you do when it’s placed before you?  The reality is staring you down?

I’m 40.  Now I’m not loving that – but I’m trying to embrace it. It’s fine, really.  No big whoop.  I thought it was going to be a big deal.

You know what?

BRAIN SURGERY (2 TIMES) IS A BIG DEAL….Just sayin.

Part of me still held a little, tiny, bit of hope that I’d be able to be a mother one day.  Back in my 30’s I still had hope.  (Get it?  Hoepforheather.  HAH.)  But, that’s not in the cards.  OK.  So, time to put on my big girl panties as I’ve said before with stuff.  But now – it’s not Dairy Queen stuff.  It’s uterus stuff.  I’m feeling peaceful about it now.  I know that when time gets closer I’ll experience fear, sadness, loss, anger, more fear, and a myriad of other emotions.  Thanks to  Cowden’s Syndrome, my age and femaleness.  I used to joke if I wasn’t high-maintenance before last summer (craniectomy, Cowden’s Syndrome diagnosis), I sure am now! 🙂

Vintage neon Dairy Queen sign, Ottawa, Canada.

Vintage neon Dairy Queen sign, Ottawa, Canada. (Photo credit: Wikipedia)

See, something is going on.  Something is not quite right.

Normally, with my cycle I’m as regular as a – um.  I don’t know.  But I mean, you can set your watch to it.  Every 28 days.  For reals.  Although probably for the last 6 months or so (maybe longer?) things have been weird.  I’m not going to detail too much about it (although remember in my ABOUT ME page I do state I have no filter.  IT ALL COMES OUT HERE.  I don’t sugar coat this for anyone!  Positive today?  Sure.  But you know what tomorrow might bring?  Fear and anger and sadness.  So – if you don’t want to be part of the program?  That’s just fine with me.  I’m getting thicker skin thanks to Cowden’s Syndrome apparently. 🙂

My cycle was supposed to start on Christmas Eve.

No dice.

Nada.

Zilch.

Not one freaking hint of ANYTHING remotely related – except a weird migraine – related type headache a few days after Christmas.  It’s so odd.  For it to just stop.

The timing is so interesting to me because I have seen the OB about having surgery to get rid of my uterus on May or June of this year.  When I last saw Dr. K he wanted to talk to an OB-GYN Oncologist (I think?  But really.  Who knew there were even such doctors?) about me.  Urg.  I feel weird being the one that all these doctors talk about.  I miss the days when I could just see Dr. B for a sinus infection and then go home!

So he talked to someone about me, but I don’t recall what he said the other doctor said.  That’s OK.  It doesn’t’ really matter because if it did I’d have remembered it.  🙂  HAH.  So, Dr. K told me all my options (No thanks, I’m not doing the pill again) and I just said, “I’m ready for it to go.  It’s doing anything for me anyway.”  Plus, I knew that if I didn’t make a decision about it soon….I’d just hum and haw about it.  Back and forth and back and forth.  Wait.  I can’t get rid of my uterus!  I’ll never be able to be a mother and have children!

Wait.  I have Cowden’s Syndrome with a 1 in 2 chance (I believe) of passing on CS to my child so it’s time to say goodbye.  NONO.  Too much of that cray cray!

But let’s look at the facts before I continue to waste anymore time:

1).  Am I able to have children due to Cowden’s Syndrome?  (Well, YES I could try.  But the risk to me is too great to pass it on to my child. Even if there was a 1 in 1 billion chance I’d pass it on – I just would not do it.  With all that I’ve gone through, nono.)

2).  My age.  I’m freaking 40.  There are a zillion possible complications for me to have a bio child at this age even if I didn’t have a genetic condition.

3).  And let’s not forget – the magic bullet – I’m at a 20-30% something risk of uterine cancer due to my friend Cowden.

40.

40. (Photo credit: Wikipedia)

I know there’s going to be a lot of loss and mourning coming soon when the time gets closer.  That’s OK.  That’s part of life.  To learn and grow and mourn and try to become stronger from it.  That’s what I’m in the process now I think – trying to become stronger from the surgeries last summer.  And it’s also why I created this blog.  To dump it all here.  To write it out – and then leave it all here, on the computer desk – in the Internet sky…and then go to sleep and face tomorrow as best as I can.

Any questions?

Oh wait.  I forgot another important one!

What about all the money I’ll be saving on feminine supplies each month?!

What today is NOT

christmas paint

(photo credit: cassie_bedfordgolf Via Flickr)

It’s not a Rare Disease Day. So there’s no genetic conditions or brain tumors today!

Here’s what today is:Time for Elf! Thanks @jon_favreau !

Today is for watching Christmas movies (Elf); wrapping last minutes gifts; watching “Too Cute” on Animal Planet with my nephews and hearing Nephew #2 say, “This is making my eyes water!”

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Looks like my mom scored!

We’re also tracking Santa on NORAD, and I’m finally getting in some exercise time too! (I was going to do Turbo Jam but decided on one of Leslie Sansone’s Walk at Home DVD’s instead.)

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My nephews love to create things!

The kids built a fort in the hallway because – what else do little boys do at Grandma’s house? 🙂

There’s always stuff I can address when it comes to LDD and CS, but that will wait until after tomorrow night. Right now it’s about being thankful for what the Lord has blessed me with (family, a roof over my head, the ability to work when the jobs come, The Gospel of Jesus Christ, my HEALTH, a humble heart, and many more – plus these are in no particular order…)

Merry Christmas (Eve) to you and yours!

More on Kinder Days…

I went to Nephew #2’s class this morning and volunteered in his Christmas Holiday Party.  It was so much fun!

Cookies were decorated, music was played, books were read (by children to adults), hugs were given to me, it was just grand.

I went to the playground during recess and saw Nephew #1 who showed me some fun stuff he can do on the monkey bars.

Then…

I come home to this.

Sandy Hook.

Let me tell you readers.  My brain cannot comprehend what is going on over there.  What those family and friends and neighbors must be thinking and feeling right this moment.

I do not want to give this too much energy from my soul but I just had to sit down and get some stuff out of my head.

I feel ill.  Literally sick.

There aren’t any words.

There’s nothing to say.

Nothing will ever make this pain manageable for those families.  Nothing will ever make it bearable.

I play the “What if?” game a lot with the rare diseases in my life ~ Cowden’s Syndrome and Lhermitte-duclos disease…

Today – more than ever, I am determined to NOT – “What if?” that scenario to my morning.

I pray for you dear people who are in crisis. 

My heart is broken for you.

I am praying for you.  All of you affected by this.

(I’m now signing off to go spend some time with my nephews who are here outside digging in Grandma’s garden.)

2011 to 2012

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Yesterday I was on a mission to get a dated Christmas ornament. It dawned on me that in my eventful year that was 2011, all that was on my agenda was healing and recovering; I didn’t really focus on decorating for Christmas. (Although Mom usually takes care of that anyway.)

But for some reason, 2012 was really on my mind. Coming to a close and all of that. And then it hit me. How remarkable 2011 was for me. The brain tumor diagnosis. The diagnosis of Cowden’s Syndrome. The fact that I know about these 2 conditions now, because imagine if I didn’t know of either? I wouldn’t be getting screened to check the health of my Dairy Queens and my kidneys, etc. So, while 2011 was hell…it also held some positiveness to it. (Is that a word?)

PS, I guess counseling is really helping me too; for the fact that I can see any positive effects from the latter part of 2011. 🙂

I hoped that 2012 would be the year without surgery. I mentioned that to mom earlier today and I said it looked like I had made it, or something like that. She reminded me that 2012 isn’t over yet! HAH!

But I have tried to convince myself all weekend that if there were something of concern on my MRI report the oncologist’s office would have called yesterday. Right?!

2011 held things for me that I never imagined. And while I’d never wish that experience on my worst enemy, I’m so thankful it’s over and I guess there was some purpose in it. I’m thankful that I’m not having a craniectomy tomorrow (for the longest time I thought I had a craniotomy. Read here if you’re not sure the diff), and that’s usually one of the prayers I keep in my heart most often during the day.

I can’t exactly name the purpose now, but I know as I get older (I hope) it will come to me.

You know, it used to be that I just wrote for the sake of writing. I posted whatever needed to come out – and I didn’t really go back and edit, or even proofread, for heaven’s sake. But NOW….I feel this need to write, then wait. Maybe sit on something for a while and then go back and have a look at it after a few hours. HAH. I find that so funny.

I also find it funny that I’ve been nominated for 2 blog awards! Can you believe that? I’m so excited and touched and yet I’ve made 0 time to sit down and respond. I’m sorry I’m behind!

So I’d like to thank The Bottom of a Bottle and Lethargic Smiles for the honor and know that I haven’t forgotten! The posts are in my drafts folder getting ready to go. 🙂

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Status update

On facebook tonight I wrote: My Friday night-hot bath and Johnny Mathis Christmas music on my iPod. That’s how I do it! 🙂