It’s been awhile…

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Let’s see.  Last time I wrote it was summer.  I think.

Well, alot has changed since then.

My husband had surgery to his nether regions in July….and it definitely had unintended (but wonderful) side effects…

I am currently 18 weeks pregnant with a little girl.  And this pregnancy hasn’t been as easy as the one with Sunshine.  I’m just now starting to get out of the whole “nausea/puke/sleep” phase of the first trimester.

So blogging hasn’t been a priority for the past four months.

I will say that the fibro is definitely better with pregnancy, as it was with Sunshine.  Although the six weeks it took me to come off of Lyrica and Topamax was awful.

And this pregnancy came with migraines.  Something I didn’t have at all with Sunshine.

They aren’t the blinding, must-lay-in-bed ones that I had pre-pregnancy. But they come with worse nausea and increased fatigue.  I’ve been in the ER twice this pregnancy to get fluids and help getting rid of the migraine.  So far they have lessened, but I’m averaging at least once a week.  I was up to three a week during the first trimester.

So far my eyes are holding up.  I was warned around 6 weeks when I had my regular follow up with the eye doc that my eyes will probably worsen.  I’m seeing floaters, but its not bad enough to affect my visual field.  I follow up with eye doc next week.

But this is definitely a surprise and very, very, wanted.  Sunshine was a bit hostile at first…but after she found out it was a girl, she has warmed up considerably.  I take her to my OB appts, especially the sonograms, and I think that has helped her get used to the idea.

So my posts will be definitely few and far between.  But I just wanted to post an update.

The other side

So my beloved husband is now having health problems.

He is normally one of the healthiest humans I know.  He exercises, he actually tries to GAIN weight, and avoids doctors like the plague.  

But when he was a teenager, he had issues with his urinary tract.  He had two surgeries to correct the tube that carries urine from the bladder out of the body.  Twice he needed emergency care because he couldn’t urinate.  

So its been 20 years since he’s had issues.  I honestly think that if I had not insisted on him seeing a urologist because of my suspicions of him having difficulty with urination, I would have found him on the bathroom floor one morning unable to urinate.

As we suspected, he has another stricture.  This one will take extensive surgery to fix. But this fix should be permanent.  

He is so nervous.  Surgery is 8 days away and he is a mess.  He can’t sleep, he’s going through the entire HR debacle, the pre-surgery tests.  The questions from family and friends.  And because it is such a sensitive area, especially for a man, I guess the anxiety is worse.  

It is hard being on the other side of things.  To see my husband so upset with anxiety, with the “what ifs”, with the anticipation of pain.  

I finally know what it feels like to be the one who doesn’t know what to say.  I’m pretty sure everything will be ok, but I remember how I hated it when people would say that to me because they couldn’t guarantee me that.

My issues dealt with my eyes, and with my entire body with regards to the fibro.  This is a specifically focused issue.  On a very male part of his body.  I have no idea what he is going through.  

So this is a learning curve for me as well.

He will be officially laid up for about two weeks.  Aside from my nursing skills that will be used to care for him post-op, I will try to put all the technical stuff aside and just be a caring wife.

So positive thoughts are appreciated.  Before he goes under the knife, we are taking our first family vacation.  All other vacations we have taken have been subsidized by my parents.  It has been greatly appreciated, but this one is the first one that we have been able to afford completely on our own.

So off to the beach we go next week.  We didn’t know about the surgery before we planned the vacation, that is just the way it happened.  

We will try to put the surgery on the back burner for a few days and enjoy the sand and the sun…

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.

 

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.

Day 12

Your bucket list:

Travel – Hawaii and Italy are at the top of the list

Learn Krav Maga

Write a memoir

Read The Lord of the Rings Triology

Go to a music festival like ACL (local) or Bonnaroo with my husband.  Especially if Pearl Jam is playing.

Get my BSN/MSN

Take courses on history

Volunteer for a domestic violence shelter

Have another baby.  I put this on the bucket list because it probably won’t happen…

Cook an entire Thanksgiving dinner by myself

Learn how to knit

There are lots of other things, but right now that’s all I have…

The Halloween hangover

Ugh.

I survived my Halloween “adult trick or treating” as Sunshine would call it.  I was out on Sixth street in Austin until about 2 am.  And I loved it.  

We haven’t been “out” like that since our wedding (June 2012).  So it was great to dress up and join the masses of crazy people in Austin.

I looked amazing.  I won’t post pics here, I know Sunshine’s sperm donor probably still reads this blog.

But I was decked out.

I just loved seeing everyone in their costumes, seeing people having fun.  Listening to music.  Quasi dancing with my husband.  

I was permitted to sleep until 11 today…thanks to my husband and the rest of the family understanding.  

This was a big deal to me.  I was able to go out for hours, in boots, have a few drinks and stay out late and I’m not dead today.  That’s progress.

No way on this earth I would have been able to do this a few months ago.  Let alone a year ago.

I guess one of the really shitty things about chronic illness is giving up things that were enjoyable.  Not that I was particularly athletic before the fibro, but I could shop, hang out with friends, etc without needing a nap an hour in.

I also know that I am getting older (and so is my husband).  We can’t hang with the 20 somethings anymore.  But just having the health to be able to try is wonderful.

So I’m just resting.  I’m just recovering.

This week it is now Sunshine’s turn…bring on the Trick or Treating!

Another health scare…

Last night, I was listening to my husband recap the ENTIRE “Breaking Bad” series in his own words.

I suddenly got a very sharp chest pain, right behind my sternum, that radiated to my back.

It felt like someone ran me through with a hot poker.

I also felt nauseous, couldn’t breathe and my throat felt like there was a lump in it.

I was a bad nurse, and three weeks ago I elected to take myself off of my blood pressure medications (because I was feeling pretty good and was starting to “bottom out”).

Well, last night my bp was 160/110.  Manual.  Yes, I checked it mysef (after my husband freaked when he saw 160/100 the first time).

I had my husband dig through the closet to find some old bp meds.  I also took some heart burn medication and benedryl.

The pain eventually subsided after an hour or so and I conked out.

I didn’t go to the ER because I’m poor and have no insurance.  

This morning I woke up with elevated bp and feeling like hell.

So I saw my doc, and the EKG showed that it wasn’t a heart attack.  She is calling it an “esophageal spasm”.

FML.

But I’m thrilled I didn’t have a heart attack at age 31.

And I am now back on my blood pressure meds.  Someday I will learn to be a good patient.

The truth hurts..

So Sunshine’s absentee father found my blog.  And he is not at all happy with his portrayal.  

I would like to point out that the child has not had ANY communication with this man since July 21 of last year.  He also blew off a scheduled visitation with her two weeks later.

Imagine what it was like for me…just started on chemo…just came home from supporting my husband as he buried his mother…and having to try to come up with an explanation to my five year old as to why her Daddy didn’t show up to visit with her.  Fun times.

The last 15 months have been difficult.  If you are reading this blog, you already know that.  

Sunshine still occasionally asks about him and her stepsisters and half sister.  I have no answer for her.  All I say is “he is making different choices right now”.

I’m still not clear what prompted his sudden interest in our child.  I did briefly have a text conversation with him that basically solved nothing.  

No reason for the disappearing act.  No apology.

And no inquiries to Sunshine’s well being.  None.  Not a request for a picture (I did send one) no musings on how she is doing in school…no questions about her as a person and how she is growing up.

Apparently he has found God and is praying for me.  He informed me that God will deal with me.  Nice.

This little conversation completely reinforces my decision to leave.  

One day she will have more pointed questions.  And I will show her the reams of email messages, transcripts of text wars.  

I still have my wedding album from my first wedding, along with some of his old pictures.  I still want her to know where she came from.  He is half of her.  And she will be curious one day.

I am eternally grateful for my dad and my husband.  They both have amazing relationships with her.  She also had a great relationship with my grandfathers.  

Positive thinking:  I worked all this week.  I have new floaters in my eyes, but I don’t know if they are old floaters or new ones.  I’m trying to hold out until my appointment with the eye doc at the end of October.  

Things are going smoothly at la casa de mi familia.  No one is dead yet, the cops haven’t been called, and the cat and the dogs are getting along…but keeping their distance.

Sunshine loves her new school.  She seriously just asked me to make up more math problems for her to put in her homework journal.

Despite the circumstances, things are going pretty well.

 

Waiting

I hate being dependent on medication.

It is seriously like a drug addiction, only one that is legally sanctioned and promoted by the medical establishment.

I have taken a ton of medications during my adventures with chronic illness, but nothing sucks quite as much as being off of Lyrica.  Effexor XR is a close second.

I have been on Lyrica for six years.  After the initial six weeks of haze, vertigo and “out of body” feeling, it worked remarkably well for my fibro symptoms.

Late last year I had difficulty obtaining Lyrica, and I tried to go cold turkey.  It was horrible.

This time I’m a little bit smarter, and asked my PCP about what I can take to help.  So I restarted my Elavil at night to help with sleep.  But the pain and fatigue isn’t helped much.

I also have the intolerance to touch that I had before I started Lyrica.  I don’t know what the technical term is, but when I’m off Lyrica, my skin is more sensitized.  If I brush up against furniture or a person or even itch a scratch, the pain is overwhelming.  Breathtaking.  And the area throbs for at least a minute.

And the fatigue is the usual.  Just the run down, struggling to put one foot in front of the other fatigue.

I’m waiting for Pfizer to gift me with another supply of Lyrica.  I wrongly assumed that I was out of refills and would have to do all of the faxing of medical and financial records to get another refill.  So I slacked.  And now I’m paying for it.

Hopefully it comes through in the next week.  This is really getting annoying.

Good news…and getting back on the horse..

Friday I saw my eye doc.  No inflammation for the first time in over a year.

Per that doc, I don’t have to get back on antiinflammatory meds unless I have other symptoms that need treated, like joint pain and fatigue.

So far, so good.

My vision still isn’t fantastic, and once I get health insurance again (if that miracle occurs), I need to see the kind of eye doctor that prescribes contacts and glasses.

But I did two things that I haven’t really done in almost a year. I drove a car and not just to the grocery store less than a mile away, and I worked.

I am not foolish enough to believe that I can jump right back in to full time work.  I signed up with an agency that does health screenings for corporations and I was able to do five hours of ht/wt/vitals etc without dying.

I had some iffy moment with dizziness, difficulty with memory, difficulty lifting things.  But I worked and didn’t require EMS response.

Today, I feel like ick.  I think its more of the fibro and a combo of emotional stress.

Yes, the money is still an issue.  Add in the fact that my family (read:  father) is still punishing me for looking for alternatives to asking him for money.  I think that emotional distress is causing more pain than my disease processes combined.

But, I’m happy I am able to do SOMETHING.  And if anyone is willing to pay for a private nurse to advise their health decisions, I’m always looking for that type of work.

Until then, I hope I get more work through this agency, and the goal is to be back to full time work in the next six months.  Providing that I don’t experience a relapse or any other fun health issues.  

Thank you for reading!!