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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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.

 

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.

 

S: Stress

The idea that stress affects body wellness is not new.  Even when I was in nursing school over a decade ago it was well understood that stress elevated HR, increased the release of cortisol and unleashed the gates of holy hell in the body.  Chronic stress was even worse.

Since that time, more and more studies have been done that clearly demonstrate the link between stress and illness.  You hear it in the news constantly.  Look at the instances of PTSD.  Stress is right in the name “post traumatic STRESS disorder”.  I do have PTSD, but I blog about it elsewhere.  I’m not ready to merge those blogs just yet.  If you want to read about that journey, message me and I can send you the link.

But back to normal, everyday stress.  I know for me, having fibro, my symptoms are greatly magnified when I am under stress.  I do feel that the increased stress I experienced in the spring of 2012 probably led to the advent of my autoimmune disease.  Did it cause it?  Probably not. But it might have laid the groundwork for it to manifest the way it did in such a violent way.

I try to minimize stress as much as possible.  For awhile, I was doing yoga.  That helps me tremendously.  Just centering myself, meditating, focusing on breathing.

I listen to music.  I have very eclectic music tastes and depending on my mood, I can go from listening to Eminem to the soundtrack from Frozen.  Getting those emotions out helps.  I also find that even when I’m in a good mood and happy, reiterating that to myself is good.  I often play my wedding soundtrack and relive all those loving and warm feelings.

I know exercise helps with stress, although for me it can cause more.  But I try.

And talking.  One of my BFFs is my outlet.

Living with my parents isn’t easy.  I am eternally grateful that I am not homeless, but it is like I’m 17.  I can do NOTHING right, from cleaning my room, doing my laundry to raising my daughter.  It is a source of endless frustration.  My friend has generously offered to be my outlet.  She will get random texts about stupid things that I experience.  I don’t expect a reply.  I don’t expect advice.  I just need to express to another human being what I am going through.  That has been such a help.

Writing helps too. This blog helps.  And the warm words of encouragement help me get through the really rough times.  So thank you 🙂

R: Respect

 

Respect.  It’s like the Aretha song.  R-E-S-P-E-C-T find out what it means to me…

Well, to me it means understanding that I’m not the generic patient.  What works for the “majority” of patients doesn’t necessarily work for me.  I am a unique individual, with my own unique DNA, my own unique chemical structure and I may react differently than expected to a certain treatment or medication.  It is understanding that I may not fit the cookie cutter mold of what a certain patient “looks” like.  And this applies to my family as well as my docs.

It also means respecting my intelligence, my decision making abilities and my goals of care.  In hospice, the focus is always on what the patient wants, what the goals of care are, how we can achieve what the patient desires.  I think that should be applied more to medicine in general regardless of setting.

For me, my goals mainly consist of maintaining my vision.  Keeping my pain and fatigue at low levels.  Maintaining the ability to work at least part time.  I know my limitations.

I just wish the medical community would take this into consideration when starting a treatment.  Think outside the box.  Be more holistic.  Understand and respect the patient as an entire person, not just a body.  That is what respect means to me in this context.

Q: Quiet

 

Quiet. Solitude.  I’m one of those that need it.  I grew up in suburbia, leaning more toward the urban part of that word, but since I have moved to Texas, I have been enjoying the quiet and I think it is very beneficial to reduce stress and to promote health.

I haven’t meditated in awhile.  My “S” will be on “stress”, so you will see more on that there, but my current situation doesn’t allow for much meditation.  There are just too many people living in this house.  There is too much going on.  Four adults, one child, two dogs, one cat.  Too many creatures breathing in too small a space.

I’m writing this a few days in advance.  I woke up (not on purpose, as Sunshine have a nightmare about American Girl dolls chasing her last night) to watch the eclipse last night.  It was cold, and probably didn’t help my pain.  But I wrapped a blanket around myself and went out to watch it.

No one was up (at least for a little while).  I could hear nothing but the wind.  Even the neighbors dogs were quiet for the time being.  It was so peaceful.  It was something I needed.  That solitude.  That time to just relax and be.

And then my mom woke up to see what I was doing.

But it was nice while it lasted 🙂