I survived…barely.

My husband had surgery July 25.  He is just now returning to his baseline.  It has been a rough month.

I’ve been a nurse for over a decade.  I grew up in a “nurse family”.  I am not a nurse for the money, trust me.  I truly feel a calling to help others.  Specifically those at the end of their life.  But you never forget basic nursing skills.  I think it is unfortunate that I had to use these skills while my husband was in the hospital.  I am appalled at the level of nursing care he received.  During and after.

I have to say that his surgeons were excellent.  And continue to be absolutely fantastic.  I have never had a surgeon hand out his cell phone number and say “call me with anything”.  He also took it upon himself to call my husband personally after the surgery to check on him.  The surgeon even did the post op tests himself as well.  I am truly amazed.

He had some set backs with infection, inadequate pain management, etc.  But now he’s on the mend and should be officially returning to work next week.

I, however, am exhausted.  I am working full time on the weekends, and that didn’t change while my husband was recovering.  Work was fantastic with understanding that my family comes first.  But going from taking care of my patients and then taking care of my husband at home has been particularly taxing.

Top it off, I am insane and agreed to watch some of Sunshine’s friends for the rest of the summer.  So I have had at various times up to three of her friends here.  Its about 100 degrees outside, so its not like I can just kick them out to run off their energy.  And with a gaggle of seven year old girls, there is always drama.  I am very much looking forward the first day of school on Tuesday.

So the fibro is flaring, but I am able to work.  I have been able to take care of my husband.  I just need a break….

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MOVING!!

We officially moved out of my parent’s house this past weekend.  The real estate market here is insane, and it took about three months of looking to find a place that would accept us.

So now I’m in recovery mode.  Moving SUCKS with fibro.  I hate feeling useless, so I overexert myself in order to “help”.  I also made the mistake of missing a dose of Lyrica one night, so I was essentially out of it for most of Sunday.

What I did differently this time is take frequent breaks.  I also didn’t put any major stipulations on when I wanted things done.  Right now only the kitchen is completely unpacked.  I don’t mind living in boxes for the next week or so as long as I can function and I don’t hurt myself.

The stress of four adults, one kid, two dogs and one cat living in one house has now dissipated.  I am so much more relaxed and so is my husband and Sunshine.

I am forever grateful to my parents for letting us live with them during a very trying time.  It was difficult with so many strong personalities living under one roof.  But we survived.

Now to be unpacked by the end of the month.  Yep, that’s a good goal…

 

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 10

Share an old photo of yourself:

 

This is me and my husband at my winter formal dance in December of 1997.  I was 15, he was 18.  That dance was absolutely magical, and always stayed with me even after we both “grew up” and married other people.