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.)
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.
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!
Opening: More books!
Giggling: At myself.
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.
Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.
I was just thinking to myself a few days ago, “Man. I can’t wait for Fall.” Coolness everywhere is what this girl wants!
Anyway, I know it’s been a while since I checked in. Been really busy these last few weeks, which of course is a GOOD thing, but then my “recovery” after the “busy-ness” can take me a few days. Even after 5 years, I am still constantly learning how to manage my life now. Granted, I probably wasn’t doing too hot of a job before diagnosis. Now, add all this to boot? You see where I’m going, right? Also, thank you to everyone who shared my crowdfunding campaign. The deadline is in 4 days and I didn’t reach even 50% of my goal. Darn. Maybe I’ll try again another time.
I went out-of-town for a few days this week, been able to sub for a few days too. Fitting in exercising somewhere too. Sometimes, managing the medical stuff really is a full-time job. I had a few appointments a few weeks ago, so I plan to be writing about those soon. And, remember when I said I went out-of-town? Here’s a quick hint as to where I went: