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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Two months…yeah…that’s about right…

Yes, I moved.  It was as horrible/wonderful as I anticipated.

The past few months have been a whirlwind.  And in the whole moving process, I got locked out of my WP account.  And in the few minutes each day I had to sit down at a real computer to try and rectify it, I kept getting the runaround with WP.  I finally was able to get back into it today.

In addition to moving I was offered and accepted a full time position.  

I guess that is the true mark of recovery.  Returning to full capacity as a productive citizen.

This one comes with a caveat though.  I’m not working a true 9-5, M-F.  I’m doing weekends on-call at my hospice.  Meaning I go “on” at 5pm on Friday, and I am “on” until Monday at 8am.  I receive all calls that come in to the two offices in the area, and I am responsible for the visits, emergency visits, deaths, admissions that come my way.  I do have back up, and a fantastic support team.  Its like a condensed version of a work week packed into the weekend.

After a full month of working this way, it is kind of better for me.  Instead of my workdays spread out over five days, I get it all done in two.  I usually recover on Monday and then I have Tuesday through Thursday to spend with Sunshine and my husband.  I spend Friday gearing up for the weekend to come.  

Health wise I’m doing ok.  I started increasing my Lyrica by 25 mg in June, but the side effects weren’t cooperating with my schedule, so I abandoned it and I’ll restart it soon.  

We also found out that my husband needs a pretty extensive surgery, so he will be taking front and center in our health dramas starting next week.  It sucks.  I’m not happy that this is happening, but I do appreciate the opportunity to be giving back to him and to be caring for him as much as he cared for me over these past years.

So I didn’t drop off the earth, just been busy, and locked out.  Hope everyone is well!!!

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…

 

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!!

 

 

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.

 

U: Update

 

I went to the eye doctor’s two days ago.  And finally.  Some sustained good news.

Despite some scarring, my eyes are the best that they have been since diagnosis.

It is hard for me to believe that.  For nearly two years it was one calamity after another.  So it is hard to let my guard down.

But I am off steroids.  I am off methotrexate (for nearly a year now).  I will always have lingering side effects from those two drugs.  I will always have scarring in my eyes, I will always have vision problems.

Mainly I see “floaters”.  I also have difficulty transitioning from darkness to bright light.  It seriously takes me awhile to adjust.

I have nausea and stomach issues from the steroid and methotrexate combo.

But I have my vision mainly intact.  For that I am thankful.

So just hoping to get back on my feet.

Still living with my parents, hoping to be out of here in a few months.

Work exhausts me, but I’m managing.

It has been two long years with this autoimmune shit.  I know it isn’t over.  But it is nice to be able to take a breather.

O: Optimism

 

I do believe that having a positive outlook can make a difference.  Despite all my bitching on here and occasionally on FB, I do try to see the bright side.

What I have taken away from this most recent bout with illness is that I was there for my husband when his mother passed away suddenly in 2012.

If I were working full time, I wouldn’t have been able to be there for him all those weeks when he was stuck in his home state and I was in Texas.  I would have been working extra hard, wouldn’t have been able to answer his calls 24/7.

At the same time, my daughter was going through a crisis with her birth father.  I was home for her.  I was here and although I was sick, we had tons of “Mama-Baby” time watching movies, playing at home, occasionally going to the pool.  I feel that if I wasn’t sick, I may not have been able to give her the attention she needed at that time and throughout her first year of school.

Being sick has made me slow down.  Right before I got sick I was working at least 60hrs per week.  I was making money to pay for my wedding.  It was unfathomable to not have internet, not have cable, not have two cars, not go out to eat at least twice a week.

But slowly as my financial fortunes changed, my outlook on life has changed.  I really don’t NEED all of that.  I was never someone to be very materialistic, but having things stripped down to the bare minimum, and beyond, really helps you realize what is important.

So one thing that chronic illness has definitely given me is the ability to be more of an optimist.

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.

 

 

H: Help (!)

 

It is very difficult to ask for help.  Especially in the beginning.  I was 23.  But my body was so weakened by my infection that I basically had no choice.  And over the years, it has become an act of survival.  I have to ask for help on occasion.

The summer of 2012, August in particular, was extremely rough.  My newlywed husband was on the east coast dealing with the aftermath of his mother’s unexpected death and trying to figure out how to care for his disabled father.  I had just returned to Texas after the funeral, expecting to return to work, only to be told that my autoimmune disease had progressed and I would have to increase my steroids to 60mg daily and start methotrexate.

I was sick.  Like really fucking sick.  Like in bed 24/7 sick and puking.  And I had a five year old.  And a husband 1500 miles away.  I needed help.  My babysitter and her family swooped in.   My babysitter even had her little brothers do some of the “man chores” like take out the trash.  My neighbors even brought over food and watched my daughter when my babysitter couldn’t.  My mom did my laundry and cleaned my bathroom.

That kind of help was tremendous.  Sometimes they just did it without asking.  Sometimes when someone says “is there anything I can do?” take them up on it.  Seriously.  When you are sick, you can’t be superman (or wonder woman).  You need help.  So take advantage of it.  And then think of little ways to show your gratitude.

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.