Z: Zamboni

 

I hope that when this posts I can still legitimately talk about hockey as a Penguins fan.

Yes, I am a Pens fan, and my husband is a Flyers fan.  And we still love each other.

For those of you who don’t really care about hockey, or who live outside the U.S. and don’t care about NHL hockey, the Pens and the Flyers hate each other.  Its a pretty nasty rivalry.  Maybe not as bad as the current Rangers/Flyers one going on right now, but its pretty bad.

 

Luckily, my husband and I are adults.  Even if we do make fun a little every once in awhile.  And my friends from Pittsburgh absolutely love messing with him on FB.  It’s all good natured, however, and my husband is really good about it.

It has to be difficult for my husband.  He is the only Flyers fan here.  My dad, myself, my mom, all my friends…we are all die hard Penguins fans.  And he knows it.  The never fail to remind him.  So I truly commend him for being such an adult about it.

So I hope the Penguins back up my assertions….

Oh, and a Zamboni is the machine the cleans the ice in between hockey periods.  I was desperate.  This A to Z challenge has been interesting and…challenging?  Thank you for reading!!

 

 

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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:

 

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.

 

V: Vanity

 

I know it is stupid to think about when you are fighting for your life, your vision, your health.  But at least to women, looks are important.

I would like to be that woman that says “I don’t care what people think” but its a lie.  When I was REALLY REALLY sick I was puffy, I looked like something the cat dragged in, I gained 40+ pounds.  I felt awful, I knew I looked awful.

My husband was fantastic, of course.  I’m very lucky that he pointed out to me what I was going through.  That it wasn’t important.  That my health was important.

But I did things that made me feel beautiful.  I took care of my skin.  I would occasionally dress up (that usually meant something other than yoga pants).  It was just important to me.

Now that the weight is FINALLY melting off, my hair isn’t falling out and I don’t look like Michelin Man, I feel better on another level.

The point is, for women at least, take some time if you are sick to make yourself look good.  It could be as little as taking a long bath and using nice lotion.  Its important on another level.

L: Love

 

I have other plans for “M” so this post goes here.  And since marriage isn’t an equal right *yet*, it is unfair to put this post in that category.

Chronic illness wreaks havoc on one’s love life.  It played a pretty major role in the devastation of my first marriage.  I think I would have eventually figured things out, but my diagnosis definitely helped me see his true colors a lot sooner.  So in that case it was sort of a mixed blessing.

With my second marriage, my husband knew me in all stages.  Pre-illness #1, pre-illness #2 and he has loved me and stood by my side as a friend or lover through all of them.  I remember talking to him on the phone while hospitalized during illness #1 (while married to husband #1).  He was puzzled why my husband at the time wasn’t there talking to me. That should have given me all the answers I needed right then.  Not once during that hospitalization or subsequent ones did he EVER stay more than an hour or two in the hospital.  Including the birth of Sunshine and HER brush with illness when she was three months old.  Some people just don’t do well with those types of situations.  You find out who they are after a life altering diagnosis.

But this isn’t a “bash my ex” session, I have another blog for that.

Relationships are difficult by nature.  Just look at the divorce rate.  Add in the stress when one (or both) parties are sick and that divorce rate can skyrocket.  It happened to me.  I was told after we split “I fell out of love with you when you got sick”.  And that is a direct quote.

I am lucky that a friend who has been by my side FOREVER wanted to be more than a friend.  I was lucky that he accepted my illness that I had at the time and still wanted to marry me even AFTER I got yet another diagnosis.  I was diagnosed with the autoimmune in my eyes literally days before our wedding.

It isn’t always hearts and flowers.  Right now we live with my parents because I couldn’t work for 18 months.  My meds are expensive.  When I was on steroids my mood swings were legendary.  My migraines are horrific.  I gained a tremendous amount of weight on the steroids that I’m still trying to work off and for awhile I resembled Shrek.  Our first year of marriage mainly consisted of doctors visits, eye injections, chemo injections every weekend, nausea and weeping thanks to the dreaded steroids.  We didn’t even go out to dinner for our first anniversary because we couldn’t afford it.

So many times I was terrified he would say “I can’t deal with this bullshit.  I’m gone”.  I even told him right before our wedding that he didn’t have to go through with it. That he deserved to be with someone healthy, that he had a free pass and we could still be friends.  He still married me and he has stayed.  He has been everything I ever wanted in a partner.  He is (mostly) calm, very compassionate, very intelligent and inquisitive about what is going on, willing to help out with everything that I can’t do.  He understands my limitations.  He doesn’t expect too much from me.  He actually asks how I’m feeling, he knows what exhausts me.  He encourages me to rest ahead of activities that he knows drain me. I’m very lucky.

Is it perfect?  No.  Do we argue?  Yes.  Do we get sick of each other, of the situation, of everything? Yes.

What helps that he is a scientist.  He has a degree in chemistry.  It is in his nature to understand my conditions and to understand why I am taking what medication and when and what it is supposed to do, what its side effects are.  He even read up on my conditions when we were friends and when he had absolutely no intention of spending eternity with me. That was just because he wanted to understand me better as a friend!  He gently reminds me to take care of myself.  He knows I forget to do that because I’m a nurse, it is in my nature to take care of everyone else first.  I will forget my meds, forget to call in refills, forget doctor’s appointments.  So he makes sure I take care of myself.

He goes to most of my appointments with me.  He is my advocate.  I forget things that he might mention and he sees things that I may miss.  I may be an awesome nurse, but I am an awful patient.  My husband will likely mention something to the doc that I have forgotten and it usually makes a difference.  And it is so wonderful to have him there as a support.

And when we do get fed up (especially now living in such close quarters), we talk about it.  Usually over text.  Communication seriously is the key. I know it sounds cliche but if he knows I’m acting a certain way because I’m late on meds (again) or because I’m having more pain because I’m not sleeping, that helps him more than him thinking I’m mad at him for no reason.

And I know that for me personally, having someone that dedicated and committed to me and my well being is paramount to my health, emotionally and mentally.  And that in turn helps me physically.

Maybe all you need is love after all.

 

 

G: Grateful

Grateful.  I am grateful for so many things.  Nothing like poor health to help a person focus on what they are grateful for.  So here are some pics of what I feel grateful for:

My Sunshine. She makes everyday brighter with her smile.

My love. My best friend. My partner. He makes everything all better. He loves me even though I’m sick.

This girl. She has been listening to all of my bitching and moaning through this most recent incarnation of bullshit in my life. She gets interesting texts at all hours and is always willing to listen.

Mi familia. Even my parents. I seriously would not have been able to survive an abusive marriage and chronic illness without them.

Punk. She listens. Cuddles. Keeps me warm. Love her.

Sunshine. Again.

My books. Keep me sane. Keep me from dwelling on my issues.

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.

Gainfully employed

I started back to work today.  A permanent job with permanent hours.  Its pretty much everything I was holding out for…hospice…part-time…flexible hours..in a territory close to my house.  I’m anticipating it going well.

The next week or so will be orientation.  I sat in front of a computer screen today and did policy and procedure modules. I’ll get more of that the rest of this week interspersed with meetings.  Next week I’ll be out in the field with one of my nurse friends that I used to work with at another hospice.  She put in a good word for me at this job.

I’m just anxious to be helping people again.  I know it is hard to explain to people who aren’t in this profession, but I miss it.  I miss the human interaction.  I miss listening to people, helping them solve problems, educating them.  I truly love being a nurse.

I didn’t sleep well last night, I’m chalking it up to nerves.  So some of the modules were somnolence inducing.  Tomorrow I get to meet more of the team.  I’m anxious to see how things work with this company.

I’ve mapped out the paydays and we are looking at moving mid-April.  It can’t come soon enough.

The pain has subsided with the rise in temperature.  Yesterday was BRUTAL.  Ice is not my friend.  I live here for a few reasons.  One of them being so I don’t have to deal with the total bullshit called winter.  This was my backyard yesterday morning:

We used that grill a few days before…in 80 degree weather

 

I am soooooo looking forward to warm weather.  I don’t mind the heat.  I may occasionally complain when it gets into the triple digits, but I definitely prefer it to this crap.

SXSW starts this weekend.  I will be down there next Thursday night (my birthday) in hopes of feeling “cool” and “trendy”.  I didn’t get to go last year because of my health, so I’m looking forward to it.  I think its hilarious the things that I do now in my 30s that I didn’t get to do in my 20s.  Maybe its because my husband in my 30s is much more fun..

Very happy to be among the productive, contributing segment of society again.  Its hard to explain how this feels to someone who has never experienced it.  Even though I was (still am) sick, not being able to support myself, having to rely on others is a horrible feeling.  Although I have a wonderful husband who has never ever made me feel at fault or responsible for the situation we are in, it still sucks.  Seeing him work so hard at TWO jobs, one on night shift, just makes it worse.

So hopefully after a few weeks he can cut back, and we can get back on our feet and our situation can change.

Very optimistic right now.

 

 

 

 

 

 

 

 

Day 28

Memories:  Top 5 moments of your life

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

Meeting my husband (in 1997)

Sunshine’s birth

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

Disney with Sunshine, 2011

This moment right here, 2012

 

 

 

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 20

Something you are trying to figure out..

How to write a book.  I would love to write a book about my experiences as a teenager, relationships, my love story with my husband.  I want to write a book about my husband and his friends and their crazy exploits.  I have journals full of ideas.  I have even started a timeline and outlines.

I just get discouraged.  Look at Amazon.  There are millions of books on there for every genre, situation, idea.  I get 5-10 review requests per day with someone asking me to review their self published book.

I am not a trained writer, the last English class I took was in 2000.  Although I know how to express myself coherently, I have no idea how to structure it into a decent story.

The goal is to get SOMETHING written before I’m 40.  Even if it is just for me.