Health, Lhermitte-duclos Disease, Photography

Friday night accomplishment

I had a very rough week.  I worked at a temporary job for a few days that kicked my butt.  I am noticing certain things are continuing to get harder for me; and that frustrates the heck out of me.  I try to put on a good face as much as I can, but inside I’m struggling.  I knew that I had to exercise last night.  I had to.  But, I wasn’t sure I could make it.  I wasn’t sure I could drag myself out the door and to the gym.  I know it’s good for me.  I know there are many benefits of exercising.  I know all this.  But, when my brain is done for the day…it’s done.  I can’t change it, you know?


But I did go workout!  I am very proud of myself that I did it.  I felt so much better when I got home last night.  I am glad I found the strength deep down within me to do what needed to be done.

Health, Lhermitte-duclos Disease

Brain balance

I had a brain scan this week, and saw the neurosurgeon on Friday for the review.  I was up super late last night going through the report with a fine-toothed comb.

Just participated in a #BTSM (brain tumor social media) tweetchat.

I had a terrible dizzy episode this morning right after I woke up.

At church last week I had a horrible experience in teaching my Relief Society lesson.  The connection between my brain and my mouth was lost.  I couldn’t get the words out.  I lost it in front of the sisters.  I cried.

I also had a good dinner with a friend Friday night.

I bought some new shoes and a new workout top, too.

I have done a lot of sudoku puzzles these last couple of months.

Went to a zoo with my family.

Usually, my brain stuff keeps me up at night, but what I continue to learn each day is that I have to balance my life and my health.  I don’t do it well, and I don’t do it often.  I just get to keep practicing.


My Life

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?! 🙂

My Life

Fun Fact Friday 1/30/15

I am shaking my head about this, but I feel it needs to be written for no other reason but for clarification purposes.  I hope that you all will either get a good chuckle about this, or say to yourself, “Oh man! I had no idea.  I’m glad I read this.”  🙂

I saw one of my mannnnnnny doctors a while back and she said something to me at the end of my appointment that was really surprisingShe knows I attend this church and in our conversation she said, “Now be sure to tell them you go to the Church of the Latter-day Saints.”



Now, she didn’t say “The Mormon Church”; which I could have easily corrected her, respectfully and lovingly, by telling her the name of the church is: “The Church of Jesus Christ of Latter-day Saints”.  (For some reason, people seem to gloss over the Jesus Christ part!  Why?  I don’t get it.)  Even NPR‘s “Fact Checker” didn’t do any research as I have heard it stated on air the same way my chiropractor mentioned it.

I was just so taken aback that I didn’t get a chance to say to her, “You accidentally left out the most important part:  Jesus Christ.”  On all the logos, missionaries badges, etc., the name of Jesus Christ is BOLD because it’s  THE MOST IMPORTANT PART.

I know I am not here to change the world.  I can only do what I can do on this tiny part of the Internet.  I just want YOU to know that I believe and worship in Jesus Christ.  He leads the church I attend.

My Life

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?



My Life

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”.




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.)

My Life

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. 

Cowden's Syndrome, Health

I’m not a good housekeeper, apparently

  1. I haven’t forgotten about Fun Fact Friday.  Just haven’t had any fun Fridays lately to write about.
  2. I DID NOT HAVE ANY POLYPS THIS LAST COLONOSCOPY!  In all my anger about not having the endoscopy I forgot to mention that GREAT news.
  3. I love to do genealogy.  After church today I spent 3.5 hours in front of my computer.  Doing it all.  I couldn’t get up from the computer.  It was if I was literally pulled to it.  AND, I found 2 of my mom’s ancestors that WE DID NOT KNOW ABOUT.  This tells me something, big time, about how much our ancestors want to be found.  Maybe in another post I’ll write about it.
  4. Here is a quick update I did on my GoFundMe page just now.  I love social media in all forms, and there are different audiences in each that I can reach.  Awareness; advocacy.  It’s all the same to me. It’s about getting rare disease stuff out there.  To the people.
  5. More on this post title:  It was play on words about “Housekeeping” on my blog.  As in a quick catch up.  In other news, I’m not going to post a picture of my room.  You’d see that “Bad Housekeeper” is written in my room, too.  🙂


My Life

Fun Fact Friday 8/29/14

Have you heard of WEN?  Or Chaz Dean?  I may have written about him before; I am a huge fan of his products.  There is something about them that really makes my hair different (no joke).  Really really.

Even Mom has gotten on the bandwagon, albeit slowly.  (Mainly because I talk about Chaz, or because I have QVC on all the time, she’s bound to pick up on my messages!)

Last week I asked Mom, “What’s that smell?” (she was in the bathroom getting ready) –

Mom:  “Oh, it’s three sixty-nine.”

Me:  “WHAT?!”

(She meant Chaz Dean’s SIXTHIRTEEN.)  I tweeted this exchange to Chaz and he retweeted it!  Too funny!  🙂