Thursday, June 22, 2017

Good things come in 3's - Trading one "C" for another

I'm super excited that today I finally caught my hibiscus tree in bloom.  I swear that that the blooms are only lasting a day and I seem to miss them by evening time when I'm outside.  I caught a pic of one today though.  They are so beautiful.  They remind me of my husband's mother.  She went to Hawaii as a church missionary.

Well, on the way to the hospital today I told my husband, "good things come in 3 right?"  The look on his face made me wonder if he was thinking, "Whatever you want to think sweetheart.  Go for it."  Last week, MRI/no new lesions, PT yesterday/right side has regained strength to match left, today.....endoscopy/colonoscopy.  Had to be good news, right?  (you might be wondering why all the doc visit's at once...our deductible starts over July 1 :)

Well, in my sedated state I heard the doc say that there was no sign of the "C" I was worried about....colon cancer.  My doc had been worried about it due to my symptoms.  So YAY!!!!!...then there was a "But" I did have another "C".....Crohn's.  I don't really have any feelings about it except, "Hop on board with the rest of the autoimmune stuff" (#5 to be exact). I'm guessing my earlier diagnosis of ulcerative colitis was wrong, it was Crohn's, so it won't be anything really new.  If I'm choosy on what I eat and manage stress okay, it doesn't stop me from what I want to do in life.

Here is an article that you might find of interest if dealing with multiple autoimmune things:
I feel so grateful.  I know other's who have recently or are currently fighting the battle of colon cancer.  My heart goes out to them.  I feel guilty for saying it, but I'm so glad it isn't my battle.

 So, I feel like the weight of the world has been lifted from my shoulders.  I came home and rested.  I watched a sweet little movie when I came home on Amazon Prime called "Where hope grows".  It's a feel good movie and one of the stars has Down's Syndrome.  It shows him about half way through the trailer below.  He's the cutest!

Wednesday, June 21, 2017

Food habits/painting again

Who would have thought it would be so hard not to eat anything.  Tomorrow I have to have an endoscopy and colonoscopy and I can't eat anything for about a day and a half.  It's not so much that I'm starving.  It's made me realize how much eating is a habit, and how you plan your day around leaving enough time for breakfast, making sure you finish something so you can get home in time for lunch, and pulling something from the freezer to thaw in time for dinner.  I finally had to stick something on the fridge to remind me not to eat.  Weird how we are creatures of habit.

I'm kind of nervous about the results with the symptoms I've been having. My grandpa had colon cancer, but am trying to stay busy and live in the now.  I have enough cleaning projects that can keep me busy (you know that coat closet that eventually gets so full of coats that you could keep a small foreign country warm with what's inside of it :) and am supposed to be sketching out my next painting before my next lesson.

Painting........I know this blog is "keepnitsunnysideup", but I HATE to paint, but on the other hand, I'm DETERMINED to learn to paint.  I's weird. I literally feel sick when I start a project. One of my assignments (before I quit for the 3rd time) was to paint something in only 3 hours.  I ended up with this....It represents how I feel about painting :)

I've tried to figure out why.  I know it has something to do with being a perfectionist.  With pencil, I can control most every stroke, but with has a mind of it's own and drives me crazy.
I finally did the same thing with painting what I did with getting married.  I was so nervous to get married that I went and bought my dress right away.  We grew up with little money, so I knew buying the dress would help keep me committed (it was a grand total of $275).  So, I bought a whole series of private painting lessons to keep me committed and made appointments for at least the rest of the month to keep me on track.  I guess we do what we need to do.  I hope I works.  I really want to learn, but something about it gives me a lot of anxiety.  I have an awesome teacher though who has the patience of Job.  

Well, I guess it's time to stop avoiding the painting....or .....I think the closet is calling my name :)

Actually, I took pics of all the beautiful flowers in my yard today.  Here is one of them.  These pics keep me going throughout the cold winter months.

Oh, I almost forgot.  Great news ... I went to the PT today.  The last time I went was Oct and he tested all my strength.  Since then I've been on meds (at least until 2 weeks ago) and he said that my strength on my dropsy side has improved by 20% and both sides of my body are equal.  It was awesome to leave the doc with good news.  That doesn't happen often when have have 5 autoimmune diseases.  He did recommend some things to do for balance.  I ordered them today.  I'm excited to try them....I'm excited to see if it helps me become stronger so that those darn magnets in the walls can't suck me over (those of you with MS know exactly what I'm talking about/#accusedofbeingdrunklately?).

Tuesday, June 20, 2017

Last minute shuffle

Funny for the day...So, a couple of friends of mine and I were asked to speak at a conference today.  Parking was extremely limited so we had to park far away and walk.  Well, I started making conversation with someone who was also headed to the conference.  They talked all about how they were excited to learn more about S.T.E.M. and how they had just started using it in their classroom.

Well, my colleagues and I were not talking about hardly ANYTHING to do with STEM except for some info about a few self-determination apps we were using with students with disabilities.

My mind started racing.  I remembered how the chair of the conference had told us that he really wanted us to include technology in our talk (hence the T in STEM).  I attempted to stay engaged  in the conversation while trying to create a whole new presentation "on the fly" in my head in just a few minutes.

I arrived at the check in desk.  They didn't have my name badge.  I was confused and just thought they had the presenters tags in another place.  Then after a few attempts of trying to resolve the name tag issue someone said, "Are you by chance supposed to be attending the conference on the 3rd floor?"

Phew.......I was at the wrong conference. Hmm......another makeup mirror/blindness experience? :)

Monday, June 19, 2017

Name that song

I clicked to put on one of my favorite youtube channels while in the shower ... the Piano Guys.  Their music is amazing, but their concerts are phenomenal! We have tickets to go and see them for the 3rd time in December.  I don't know if I can wait that long!

It's amazing how music can bring meaning to the present or remind us of the past.  It is so powerful.  Music has been a vital part in my family since I was born, my grandpa a composer and choir director, my Dad in musical theater/accepted to the Fabulous Phoenicians/and sang in the So Cal Mormon Tab choir.  My mom was also very musical.  Needless to say, I was exposed to all kinds of music throughout my life and dabbled in choirs myself.  It reaches into my soul like nothing else can.

Well, yesterday marked the 2 week mark of being off meds.  Up until then, no symptoms.  It's been awesome.  Yesterday however I woke up with my body thinking it was a robot (no, not the cool robot like I saw on AGT this week) and today I had jelly fish legs and arms to match as I tried to hold the blow dryer up long enough to get my hair dry. Of course I wondered if this was a fleeting thing or return to a previous norm.  It took me hours to get my butt down to the gym, but I finally made it.  I tried not to think or worry about it.  I know that worrying won't change anything except make things worse, so I just tried to concentrate on the music.

Well, the following song came on.  It totally brought me back to a time where I first heard it.  It was at the Piano Guys concert.  They were actually filming it for their upcoming video. It means more than usual because I was in the audience (I'm the one holding the cell phone :).  I had just been released from the hospital and this concert was one of my first outings.  This song is full of hope and reminded me that no matter what lies ahead, "Things are gonna be okay".  My reality isn't the future. I have no real idea what the future holds.  My reality is the now, and for now I'm getting ready to spend a wonderful evening with my daughter and her boyfriend.  It's going to be better than okay!  Thank you music for always being there to teach me and remind me of the important things in life. #lovethePianoGuys

Feel free to post songs/videos that motivate you

Sunday, June 18, 2017

Happy Father's Day

Happy Father's Day to the best Dad ever!

How could I be so lucky to have the opportunity to share my life and the eternities with this man?  I will probably never know the answer to that one.  We have been together now for over 36 years and he has been a father for almost 29 of them.  He is truly a man of honor, kind to everyone he meets and is one of the hardest working people I have every met.  He is a person people trust and come to for guidance ,and is there at the drop of a hat if someone is in need.

As a father, he played with our children, worked with them, and made them a part of his life (and he of theirs).  He is a great example of what is good in the world.  He loves them so much and I'm so very grateful for the part he has been in their lives for good.  I love you sweetheart and feel so blessed you are our children's Dad.  Hope you have an awesome day!

Saturday, June 17, 2017

"Take the curves slower!!"

"Take the curves slower!!" seemed to be my mantra yesterday.  I don't know why, but when my husband drives around the curves it feels as if my body is going to be slung a million miles an hour the opposite direction.  Well, this doesn't fit too well with his driving because he likes to speed up and hug the corners like a race car driver.  He was very sweet though and would try not to speed through the curves when I asked him not too, but sometimes he'd forget.  Needless to say, driving through canyons can be a challenge.  I wish my body didn't feel that way, but it just does. (BTW, these are pics from our trip)

I don't know why everything is an object lesson to me.  Maybe it's the teacher in me, but I got to thinking about the words, "take the curves slower".  I reflected back on those first few months after I was "thrown the curve" of a MS diagnosis.  I remembered the unrest of all of the feelings and thoughts I had inside.  I would have to say that there was a lot of denial at the beginning.  "If I just push harder this, it will go away. Maybe this is all in my head and it's really nothing."  I also chose not to read about it on the internet.  I didn't want to read things that might make me worry or put new ideas in my head that would cause anxiety.   In essence, I chose to stick my head in the sand.

 I had many people that were dear to me share ideas of things to help me, but it all seemed overwhelming and I couldn't pursue them. I knew they only had my best welfare in mind and I loved them for their concern, but I didn't even know what MS meant at that point and was far from being able to learn about things to help me get better.  I took note of their ideas, didn't discount them, but saved them for a time when I was stronger and had room in my brain to process them.

I share this because sometimes when we are "thrown a curve" in life, we have to take it slow and IT'S OKAY!  It's okay to ask others around you to take it slow until you get more grounded.  Getting a diagnosis of any kind requires you to go through the grieving process (denial, anger, bargaining, depression, and acceptance).  It takes time.  For me it was...."maybe I don't have MS/it's a misdiagnosis (or is a really mild case)", to "what am I supposed to learn from this?", to "If I learn this lesson quickly, it will all go away", to depression, and now finally acceptance and understanding.

MS is know for it's unpredictability, so I know that even though I'm in a good place right now, it is likely that it will throw another curve at me someday.  I think the key is to take those curves at your own pace, and never forget to notice all the beautiful things along that curve, even if it's a tight and a scary one.  You will make it through it and hopefully will see a lot of beauty along the way that will help you through your journey.

Thursday, June 15, 2017

Little get aways are the BEST!

Well, it's my birthday.  I didn't really want anything, but asked my husband if we could just sneak away for 2 days.  We actually had the same meeting to go to in the am so we packed the car, went to the meeting then headed up north for a little get away.  Our first stop was for Thai food.

 Our favorite place in our town had closed down and we miss them SOOOO much.  Well, the other day when I was in another town, I looked for Thai food in the area and went to a place highly recommended on Yelp.  I walked in and guess what???  It was the owners of our favorite restaurant.  They had relocated.  They remembered me and my favorite dish.  Pad Eggplant, and my husband's Masaman curry.

Well, since it was on the way to our little get away, we stopped by.  My husband was in Heaven.  The owners surprised us with some mango dessert "on the house".  It was an awesome way to start our trip.

That night we just hung out, played cards, and drove around the lake.

The next day we woke up, did a little picking up, went golfing, went jet skiing, then to a dinner theater.  Okay.....a couple of month ago I would have to rest for 2 days just to do one of those things.  Is it possible??? Could I be in remission???  I try not to think too hard about it, but I have to say it is pretty exciting.  I've been off my meds for almost 2 weeks now.  My MRI showed no new lesions.  It's kind of crazy to think about, but I am happy for every one of these gift of a day where I can be mobile and enjoy more of life that is out there.  Cheers to possible remission!!
(This shot was the best.  Thank you tall grass for saving me!!)