Is it really almost June?

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:

PTNpinkHope you all have a great weekend!

Because Lhermitte-duclos Disease and Cowden Syndrome

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Oh, how I loved these shoes!  But, they have finally been retired.

IMG_8463Here are a few pictures from my Rare Disease Day event last month.  Thank you to everyone who supported me in this endeavor!  On to February 29, 2016!

Fun Fact Friday 2/13/15

I have worked several retail jobs during my life (many bookstores), but never a department store.  Last week I was at Target and two different people asked me questions about something in the store.

First, a woman and her granddaughter walked by me and the grandmother asked me if I knew where golf balls were located.  The mortified teenager stopped her as she knew immediately that I wasn’t an employee because my expression of confusion was a dead giveaway.

Second, as I was leaving the store a man was about to ask me something, but then caught himself.  He said, “Oh wait.  You don’t work here.”  I told him that he was the second person in about 20 minutes to ask me if I was an employee.  He said, “I saw your lanyard.”  (Which, by the way, was a Disneyland lanyard.  And, NO Target employee wears a lanyard anyway!)

How funny, but how weird?! 🙂

Fun Fact Friday 1/23/15

Some of you know I am a member of the Church of Jesus Christ of Latter-day Saints.

I have written several posts about being a member of this church, and as I looked at the calendar I knew exactly what I wanted to write about today:

Twenty-seven years ago TODAY I made the choice to be baptized.  I was 15!  As they say, “Where has the time gone?!”  Geez, I could wax philosophical.  But, I won’t.  I have a testimony of the truthfulness of the Gospel and I know that Joseph Smith was a Prophet of God.  I know it.  I have a testimony of Family History work and the importance of seeking out our kindred.  Just this week I was working on the Family Search site and searching for sources on one of my mom’s line.  I found one of my ancestors listed on a U.S. Census but who was not listed on the website.  Which means no one had any record of her!  Quickly I did some more digging searching and was able to verify who she was via the sources (I LOVE the sources!)  And this was all in a matter of less than 1 hour!

I wonder what they all did right after this picture was taken?

 

 

Fun Fact Friday 1/16/15

I have written before that volunteering helps me to freak out less (kinda) about the things in my life that are spiraling out of control.  And, if I had to put them in order of favorites, I would say that going to a local school to help in the Kinder class would be at the top of the list.  A while back one of the students was showing me her art project, very proudly I might add.   I couldn’t make out too much of it, but I saw what looked like a princess; and I made out an “Fr”, and an “E” near a white and blue dress.  (Do you see where I am going with this?)  Now, I know I have nephews and I am not above making them watching this movie every once in a while, hehe.  And, I may or may not have an Olaf on my bed.  So, then there’s that.  I get it.

She asked me what I thought of her art, and of course I complimented her and tried to ask the most engaging questions I could.  I mentioned, “Oh, I see the dress, that must be Elsa.  And is that Anna?”  (Now, here’s the kicker:  I said “ANNA” as “ANN-UH”.  I have watched the movie.  More than once.  I know who the main characters are.  I thought I knew their names.)

Oh, no-no-no-no…….She schooled me in less than a second on how you pronounce the name correctly!

Without even skipping a beat she replied (with disdain in her voice), “Uhm. No.  AHNN-A”.

Ahem.

 

Taking Stock and Fun Facts Friday 1/2/15

Making: My bed. Kinda.
Cooking: I half-made a tamale last night. For reals. 🙂
Drinking: Horchata and a kidney and liver detox tea.
Reading: Eat, Pray, Love.
Wanting: To go to Las Vegas. Always.
Looking: For balance (I copied this from Jaana)
Playing: With Simon (a stray cat my neighbor started to feed a few months ago.  We have started to bring him in at night and are hoping to find him a home.  He’s amazing!)
Deciding: What I need to bring for my sleep study tonight.
Wishing: I had the right medication to help me with this depression.
Enjoying: Listening to my nephews interact with each other as they play on their PS4.
Waiting: For the Mailman.
Liking: That I have a place to workout where I feel comfortable and welcomed.
Wondering: When I will kick this depression in its ARSE.
Loving: That my nephews are so kind and loving to one another.
Pondering: that 2015 is as close to 2030 as it is to 2000!
Considering: Selling more of my purses.
Watching: BIG BANG THEORY. It is my lyfe!
Hoping: For more joy.
Marveling: At how cunning and baffling depression it is. It’s no joke folks.
Needing: some good new tunes (I copied this from Jaana too).
Smelling: Tamales!
Wearing: Black slippers.
Following: More and more blogs. I love it.
Noticing: My brain is getting kind of wonky lately. What’s up with that?
Knowing: Heavenly Father knows the deal. I have to give it up.
Thinking: My toes are so cold.
Admiring: People who are so focused and zen.
Sorting: Clothes for laundry.
Buying: NOTHING (right now).
Getting: More focused on working out more consistently in 2015.
Bookmarking: More books. 🙂
Disliking: Headaches.
Opening: More books. 🙂
Giggling: At the conversations my nephews have with each other while playing Minecraft or the Lego movie game.
Feeling: Motivated to organize a Tweet chat on Twitter for those of us with the same genetic mutation that I have. There are 13 of us so far! Rare Disease my big toe!
Snacking: On Dove Peppermint Bark. Those candies are THE DEVIL.
Coveting: Fuzzy blankets. I may or may not have bought 2 more this year!
Resolving: To not worry about what I don’t have. To focus on the positive things I ALREADY have!
Hearing: My nephews’ reactions to everything PS4.

I found this at This Mom’s Gonna Snap and in turn she borrowed it.  (Her post as the original link.)

Fun Fact Friday 12/19/14

Did you watch that TLC show last weekend called The Secret Santa?

My Mom had TLC on all day Sunday, and I must admit that I got a bit hooked on a few of their Christmas shows.  I love Christmas.  Anytime.  Anywhere.  (And I especially loved the shows that featured people decorating their homes in 245,992 lights.)  🙂

(Thankfully) My nephews were near the TV when The Secret Santa came on, and after a few minutes they were hooked.  (Almost as magical as this show.)  They were mesmerized.  Quiet.  Sitting on the floor with their head in their hands, drinking in every word that came out of the TV.  (My nephews are in 4th and 2nd grade, so they are right on the cusp of still believing in Santa.)

During the show I asked them what they thought of it.  Nephew #2 said, “It makes you believe in Santa more.”

Me too.