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…

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:

20140423_072756

 

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.

 

X: X factor

 

So what is it about some of us that makes us susceptible to these lovely and mostly rare diseases?  Is it genetics?  Is it environment?  Is it the right combo of the above?

I know for me that the fibro comes from one side, my mother’s, and the autoimmune can come from both.  My mother’s cousin has autoimmune in her eyes.  But four members of my dad’s family have autoimmune.  Oh and the migraines plague both sides. I know genetics plays a role.

I had mono when I was 14, I do know that the Epstein-Barr virus stays forever and has been linked to chronic fatigue.

I grew up in Pittsburgh, the former steel capital of the world, and I have swam in its three rivers, which will probably never, ever be 100% safe for human swimming.  Did some of that seep into my skin and cause this?

What is it about me that makes me a lightening rod for all these things?  I have always wondered that.  Maybe with all of the genome mapping and leaps in medical science I will someday get an answer.  It is just a curiosity.

My biggest fear is that Sunshine will develop my issues.  I truly fear passing down these illnesses to her.  I am super vigilant for anything that even resembles what I have.

I think I had inklings of fibro as a child.  I had horrific growing pains.  My arms and legs would ache for hours.  Just awful, awful pain that would bring me to tears.  I remember this even going into my teenage years.  And the next day they would disappear.  I can remember the pain to this day.

Also as a teenager, I can remember having “knots” in my back.  Really awful tender spots that radiated pain.  I just thought it was stress.  My boyfriend at the time was pretty adept at massaging those tender spots out.  I just thought it was par for the course.

So I am aware.

I wish that along with the specialness of these diseases, we could get superpowers too….

 

W: Work

 

I am back to work.  In my numerous years of chronic illness, I have only worked full time for less than half of them.  I’m not sure if I will ever be able to work full time hours again.  Although I try.

I am a nurse, as I have stated numerous times on this blog.  That makes it kind of difficult to work with a chronic illness.  At the time of my diagnosis with fibro, I was working night shift in the ICU.  Yeah, that wasn’t going to happen ever again.

I’m sure it’s possible, but for me it is not.  Not too many people can withstand more than a few years “running the floor” without some sort of health issues.  Most nurses eventually burn out and move on to some other type of nursing.  For me it was telephonic nursing, then hospice.

The reason hospice works for me, and home health probably would too, is that I set my own pace.  I’m not in a busy clinic, floor, ER, OR, etc.  I see a few patients per day.  I stay “PRN” meaning I work when I want.  “PRN” mean “as needed” by the way.  I don’t get benefits, but I’m not obligated to work a forty hour work week within set hours either.  I can refuse assignments.

The problems for me right now mainly deal with the fact that I am so eager to move out that I’m working A LOT.  Currently I’m pulling on call shift 2-3 nights per week.  I’ll be doing my second weekend in a row as well.  In addition to the 3-4 daylight shifts I’ve been picking up.

When I’m on call, most of the time we don’t have any issues, but I can’t take my sleeping meds.  So I don’t sleep very well.  So by the end of the week I’m in pretty bad shape.

But I am happy to once again feel productive.  I’m so happy to be back in my element as a hospice nurse.  I truly feel “at home” in this type of nursing.  I know what I’m doing, I’m confident in what I’m doing, I work well in the team atmosphere.  I have years of experience and I’m not afraid of death.  And I have a wicked gallows sense of humor.

So right now, work is great.  I hope it stays that way…

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.

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.

T: Time

They say time heals all wounds.  Well, maybe.  I do have to say from the onset of the fibro in 2005, my symptoms are much better. Under control.  But I did develop a new disease in the meantime.  Is that related?  I don’t know.  But I do know through my communications in the fibro community that it is not uncommon for those with fibro to develop autoimmune later in life.

Over time I have learned a lot.  As a nurse, I already had the database.  But you never truly UNDERSTAND an illness unless you have experienced it firsthand.  I firmly believe that.  A doc/nurse/PT etc can be the best in their field at what they do, but unless they have had the disease themselves, I truly feel they cannot understand it.

One of my best docs, a migraine doc in Pittsburgh, actually gets migraines.  And he tells his patients that he gets them too.  He tells them what it is like for him, what works for him, etc.  His research is driven by wanting to heal himself.

I have learned that chronic illness sucks.  It really does.  Being sick EVERY FUCKING DAY is really awful.  I have good days and bad, but the last time I felt completely “well” was in July of 2005.  Nearly a decade ago.  That’s a long time to be sick.

I have learned that not everybody understands.  That is a hard lesson to learn.  But you find out pretty quickly who your real friends are.  And you can even keep some of the ones that don’t understand, just don’t talk to them about your illness.

I have learned to keep my mouth shut.  There is a stigma about chronic illness.  Invisible illness.  Most people who aren’t experienced with it think we are fakers.  That we act a certain way to gain sympathy.  To get on disability.  I have leaned to be cautious with who I share my health history with.

So time has brought me some understanding, another illness, and caution.  In the future I hope it brings more research, better meds, and no more surprises.  Unless the surprise is a baby.  That would be a welcome surprise.