Y: Youngin

 

I haven’t blogged about my youngin much this past month.  So here is a Sunshine update:

She is currently OBSESSED with two things.  Frozen, and the Littlest Pet Shop.  In that order.  I find things like this all over the house:

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She makes up absolutely fantastic stories about the activities of her animals.  They go shopping, out to eat, to school and most recently I think they were having a presidential election.

I have seen Frozen probably 50 times.  I can probably recite the entire movie.  And I made the mistake of downloading the soundtrack and now have heard “Let It Go” at least a zillion times.  On the way to and from school.  To the grocery store.  To Girl Scouts.  To her friends house.  And the child has found YouTube (with restricted content) and in between her screenings of Frozen, she watches clips from the movie.

First grade has been good to her.  I had to use bribery to get her to behave for the month of March. She earned a Barbie car (which has now been converted to a LPS car) for not getting a note sent home from the teacher for an entire month.

The thing is that she LOVES to socialize.  When she does get a note, it isn’t because she did anything malicious, it is because she was disrupting the class by talking.  Or giggling.  Or trying to make someone laugh.  Her teacher absolutely loves her, says she is a joy to teach, but that she needs to get a handle on appropriate times to talk.  I had the same problem at her age.

She has always been my Sunshine. She is now starting to get “sassy” and to talk back, and even then she still manages to crack me up.  Its hard to keep a straight face when I’m trying to correct her.  Most of her musings end up on Facebook unfortunately.  My friends and family love to hear of her antics.

I don’t know what I would do without her in my life.  She truly makes all this chronic illness bullshit much more palatable.  I remember when she was still teeny tiny.  I was still newly diagnosed with fibro, maybe just over a year since diagnosis.  I spent a lot of time with her in bed, just staring at her, giggling with her.  We still do that, but usually its watching movies together.

I am so lucky to be her mama.

 

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Mr. Mom

It is spring break.  In this part of Texas, at least, most of the schools take the entire week off, all at the same time.  All K-12 and colleges are usually off.  FUN!!

Since I started my new job last week, I can’t ask for the week off, so my wonderful husband is staying at home this week with Sunshine.

And it has been AMAZING.

He has been taking her to the park, building block and Lego cities with her and even made a movie of her Barbies living in the dream house.

Monday I came home to an immaculate house.  I’m talking floors, kitchen, bedrooms, bathroom, all clean.  These are things that take me DAYS to accomplish.

I am so fortunate to have him.  He is able to do the things I cannot.  I can’t do much of the physical things.  I can’t run around in the park for two hours.  I very rarely can get down on the floor with Sunshine and build.  I can do the Legos, but my hands hurt if I do it for too long.  And getting back into work is exhausting me.

So I am eternally grateful.  I know I am a very lucky woman.  Not only have I found a man that loves me for me, he understands my illness.  He supports me in so many ways.  He doesn’t enable.  He uses the right amount of encouragement to push me to be healthier, but on my own terms.  He has educated himself on my illnesses and I rarely, if ever, have heard any of the hurtful “get over it” speech from him.  He understands why I can’t do certain things, and if he doesn’t understand, he asks.

So, thank you, my love.  This journey is so much better with you along for the ride.

GAM

My grrrrrr face

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Yes, this is my grr face.  Today is a BAD pain day.  In hindsight, I can see how this all transpired.  The “four seasons in one week” weather is contributing.  I have been running around trying to get a job, which I may have succeeded in doing.  I am emotionally spent.  I went on a date TWICE this week.  The second one probably did me in.

It was 34 degrees on the night of date number two.  And we went to an outdoor concert.  They have outdoor events nearly year round in Austin  because it rarely dips below freezing.  But we pick the one night in the past two weeks where it WAS near freezing to go to an outdoor show.  Figures.

Oh and we sat in metal chairs.  That did wonders for my fibro.

But we had fun.  We saw the Spazmatics at Cedar Street and they were fantastic.  Although I was born in the early 80s and wasn’t really old enough to get into the music scene, I knew all the songs and loved the energy.  Definitely what I needed.  A night of fun.  A true date night.  Absolutely loved it.

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So it is all catching up to me.  And since I’ve been rapidly titrating Topamax, I’m dizzy as well.  And I spent most of yesterday in the car running from my potential new employer to a drug screening, to the car dealership, to the store, to the mailbox place, to a friend’s house to scouts.  People who don’t experience what we experience don’t understand how awfully draining just driving can be.

This morning I woke up and literally couldn’t move.  My hips and low back were frozen.  Every time I tried to move, even a little, I gasped.  It was like my body was cut in half.  My husband, who just returned from his night shift, got Sunshine ready and off to school.

There are things that I HAVE to do today.  Like laundry.  I have no clue what Sunshine wore to school today.  If it matches, if it’s clean.  We are to that point in the laundry cycle where I MUST do laundry or we will be wearing bathing suits.  So that is adding to the misery.

My parent’s dogs are collaborating to make me insane by whining to go outside every two minutes.  They can’t coordinate their peeing/pooping/barking and the wind schedule.  So I’m getting up and down constantly.  Again, this is something that someone who doesn’t have these issues will never understand.  The whole act of hoisting my screaming body up from a seated or lying down position is extremely excruciating.  The same with getting back into said position.  So much so that I spent at least a half an hour pacing just to avoid the frequent up and down.

I can’t find my heating pad.  I can’t find my biofreeze.  I took an extra hot shower this morning…getting into the tub was fun.  I already took tramadol and I don’t want to take another because I do have to drive to pick up Sunshine this afternoon.  I have been stretching, but today, that is seeming to make it worse.  I have already warned my mother that I will need her assistance this afternoon.

And I’m not eating.  It is doing wonders for shedding of the steroid weight, but it might be contributing to this entire feeling like shit mess.  I think its the Topamax and the emotional upheaval.  I’ve been living on Fruity Pebbles and cottage cheese for the past few days.  And I pretty much have no desire to eat anything else.  Not even the Girl Scout cookies I have stashed away.

I keep telling myself that I can hold out another month or two.  The weather will improve.  Usually when it gets into March, we won’t see these roller coaster “four seasons in a week” periods.  I will hopefully get hired in the next week and can get back to work.  We can move out.  That will do wonders for my health.

As Sunshine grows, she is amazingly more supportive.  She hasn’t known anything else than a chronically ill mom.  She knows that I don’t prefer this.  She knows that when I feel well enough, we do the park, we do the mall, we play, we giggle, we have fun.  But on days like today, sometimes we just snuggle under the covers.  She gives me extra hugs.  She brings her stuffed animals to snuggle me as well.

I am eternally grateful to her Girl Scout troop.  Her leader and several of the moms know my issues.  They are great about helping out with transportation and play dates and getting her to and from events when I can’t.

So today sucks.  It will be 80 degrees tomorrow, so it will be better.  But then it is supposed to get cold and rainy again next week.  I honestly prefer the searing heat.  At least it is consistent.

Day 31

Your favorite:  Hobbies and way to spend down-time

Duh.  READING!!  I love disappearing into a world created by some amazing authors.  I also read for knowledge, read for humor, read to Sunshine.

I also am a huge fan of The Walking Dead, sports, funny movies.

I also spend a ton of time playing Barbies with Sunshine (ugh) I try to sway her to do the Legos more often though.

And I spent an inordinate amount of time online, reading, catching up and blogging.

Day 28

Memories:  Top 5 moments of your life

I’ll do this in pictures, in chronological order:

Meeting my husband (in 1997)

Meeting my husband (in 1997)

Sunshine's birth

Sunshine’s birth

Finally being able to start a relationship with my husband, 2009

Finally being able to start a relationship with my husband, 2009

Disney with Sunshine, 2011

Disney with Sunshine, 2011

This moment right here, 2012

This moment right here, 2012

 

 

 

Day 27

Something you miss

When she visited me in Texas, 2010

When she visited me in Texas, 2010

 

I miss my best friend.  I’ll call her Pooh.  We met in 1990 on a playground at the first day of my new school.  That was third grade.  We’ve been friends ever since.

We have been through some shit together.  We were both teased mercilessly in grade school.  I think that is what cemented our bond.  As we got older, we got in trouble together.  Summer of 1996.  That’s all I will say, and she will know EXACTLY what I mean.

My first wedding...to Sunshine's Dad, 2004

My first wedding…to Sunshine’s Dad, 2004

She was the maid of honor at my wedding to Sunshine’s dad.  She was there the day I gave birth to Sunshine.  She babysat exactly one time, and I’m pretty sure that Ms. Colic 2006 kept Pooh and her eventual husband kid free for a few years.

When I decided to leave in 2009, Pooh was in the middle of planning her wedding.  I was to be the matron of honor.  Instead of turning into bridezilla and having a fit that her matron of honor was moving 1500 miles away, she told me that I needed to do what was right for myself and my daughter.  She was also instrumental in helping me make the ultimate decision to leave and to remain in Texas.  She had some info about my ex that was proof of infidelity.  She didn’t tell me when she first found out about it because I had just had Sunshine and I was no shape emotionally or physically to deal with that kind of information.

I remember going over to her house, absolutely livid about what was going on in my life.  She calmly sat me down, explained what she knew, when she knew and told me that she would love me no matter where I was.  She probably saved my life.  If I would have gone home to my ex, confronted him about what I knew, I may not be here right now.

I returned to Pittsburgh for her wedding.  With the man that is now my husband.  And it was magical.

Her wedding, 2009

Her wedding, 2009

Since that time, she has had two babies.  I got married (again), and she made the trip down here to be at my wedding.  She was the only person from out of town to do so.  No one in my family (including my brother) or my husband’s family made it.  Her being there with me was so special.

We have remained close despite the fact that we live so far from each other.  We talk about once a month, but we text, FB, all of those things.  And every time we’re together its like nothing has ever changed.  She knows me so well, she knows my family, my husband.  Its the kind of friendship that she has no problem telling me when I’m wrong, when I need to chill out, when I need to look at things a different way.

With our baby girls, 2013

With our baby girls, 2013

When I was up in Pittsburgh this past summer, I got to see a lot of her, and meet her kids.  I swear, their cuteness rivals Sunshine’s.  We cried when we had to leave each other.

So I miss my Pooh.  I would love for her to move down here one day.  Or have the funds to visit more often.

We were supposed to take a cruise for the 20th anniversary of our friendship in 2010.  But she was preggers at the time.

So maybe it will be for our 25th.  Next year.  Wow.  I’m old.

Day 26

Share:  A difficult time in your life

I read this title and started laughing to myself.  This entire blog was created because of a difficult time in my life.  It’s getting better, slowly, but this is probably the most stressful it has been.

I’ll update instead:

I survived my trip to the east coast.  Yes, it was cold, but apparently we got out just in time to avoid the polar vortex (of doom). I got to see my bonus son and spent some time with him.  That was awesome.  His mom behaved, mostly.  I spent some lovely time with my husband’s family.  They are so warm and welcoming.  A bit different from my current situation with MY family.

But the traveling and the weather got to me. And I needed two days to recover when I got back to Texas.

Things with my mom were worse when we got back, however.  I won’t go into details.  Apparently I’m a horrible mother.

Health wise, my eyes have inflammation in them, but not to the level he wants to treat right now.  My cataract isn’t getting worse.  So good news.

But the reflux and bleeding in my stomach is pretty bad.  I am scheduled for a scope (both ends) next week.  Fun times.

My pain from fibro has increased.  I think its the stress.  My joints in my elbows, hands, hips and ankles are killing me. I am supposed to see the rheumatologist sometime this spring, if I can wait that long.  I’m going to have her run my ANA again.

And the job search has begun in earnest.  I’ve had two interviews so far.  I’m hoping to hear back from them soon.  It is difficult trying to find a job in my industry that can go along with my illness.  I’m honest about what I went through.  I don’t want there to be any surprises if I take a job and my eyes get worse.  I’m mainly looking for part-time, something that isn’t intense or requires a lot of travel or being on my feet.  Good luck finding that nursing position.  If we get a new car, which might be happening fairly soon, I can return to hospice part time.  Fingers crossed.

Sunshine is amazing.  She just got an awesome report card.  She’s selling Girl Scout cookies (anyone want some?) and she is such a good little businesswoman.  She was taking orders from her classmates.  I had to explain to her that their parents probably need to order the cookies, since the kids aren’t carrying cash around with them.

My husband is also amazing.  He’s working so much, but this is a team effort.  I’m essentially his secretary, I get things done while he’s in his work cycle.  Because he works 12 hour night shifts, I don’t see him that much for four days out of the week.  But its worth it.  He’s already gotten promoted twice.

And my mom is working a lot more.  Which means we are getting along.

Today, things are looking up.  I hope by the end of the weekend I’ll have even more good news.

Thank you for reading!!

Day 23

What is your schedule like?

Hopefully this is changing soon.  As in real soon.  I need a job.

6:30-7 am – Open eyes, carefully catalog each body part searching for pain.  Lightly stretch to see what mood my muscles are in today.  Swing legs over the bed to see how bad my joint pain is.  Yell at my mom that yes, I am getting out of bed and Sunshine will be on time for school.  I feel like I’m a teenager again.

7-7:15 am – Make sure Sunshine is clothed, fed and has all of her needed items for school.  I put her clothes out at night, as well as her breakfast (I leave it in the fridge) and she is responsible for feeding herself and putting her clothes on.  She usually wakes up at 5 or 5:30 and watches TV.

7:15-7:20 am – Drop Sunshine off at school.  They do not have buses, which means I am most likely wearing my pjs when I drop her off.

7:20 – 8 am Eat something.

8-10 am – Depending on how much sleep I got the night before, I either fall back asleep or just rest.  But lately it has been the former.  Especially when my husband is home.  I truly cherish the time I have sleeping next to him.  He keeps the nightmares away.

10 am – 2pm – doctor’s appointments, dishes, laundry, occasional lunch with a friend, calling insurance companies for my health issues, look at job listings, look for somewhere to live, blog

2 pm – quiet shower time!!

2:45 pm – Pick up Sunshine

3p-5p – Do something with Sunshine.  Library, park, Girl Scouts, etc.

5p – start dinner

7p-8p – Mama Baby time.  Usually Sunshine’s shower and bedtime routine.  Lately we’ve been playing Barbies non-stop before she goes to bed.

8p-12 a – If my husband is home, watch TV, movies or listen to music with him.  If not, read and attempt to fall asleep.

There you have it.

Day 21

Memories:  Where have you traveled?

disney

I haven’t traveled much in my years on this earth, I hope to one day be able to afford to leave this continent.

I have been to Niagara Falls several times, and even into the interior of Ontario before.  Also Toronto.  I absolutely love Toronto.

I have been to Zihuatanejo, Mexico.  If you have seen The Shawshank Redemption, you have seen Zihua.  It is the beach where Andy finds Red at the end of the movie.  Very beautiful.

I have been to the Caribbean…specifically Puerto Rico, St. Thomas, and Labadee Haiti.  On a cruise for my grandparent’s 50th anniversary.  It was amazing.

And in the U.S. I’ve been to Gettysburg, Philly (duh), NYC, Myrtle Beach, Disney, Washington D.C., Chicago and all of the states between PA and Florida and from Florida to Texas.

I want to explore the western part of this state, I have never seen a desert before.  I would love to go to New Mexico.  And Hawaii is definitely on that list.

florida