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…

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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.

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 🙂

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.

N: Nurse

 

I graduated nursing school in 2003.  Both of my parents are nurses, so it was kind of inevitable.  But it is hard being a nurse and being chronically ill.  You hear of chronically ill people becoming more health aware and more educated.  But what if you already KNOW?

In some ways, my education is a bonus.  I know what is dangerous, I know when I TRULY need to go to see the doctor, go to the ER, etc.  I can make more informed decisions regarding treatment and medications.  I know people “in the biz” that will give me completely unbiased opinions on doctors, hospitals etc.  I have a stethescope, bp cuff, and I know how to use them and what the numbers mean.  My docs tend to trust me more when titrating medications.  They tend to give me more leeway when starting a new medication or weaning off a med.  I know I have more cred when it comes to calling the doc, saying “hey, I need this, please call it in”, I usually get it without having to see the doc.  My PCP especially trusts my own assessment of myself.  And if not, she trusts my mom’s assessment.

But again, I know.  I tend to put myself LAST.  I know how long I can go without a certain med without DIRE effects.  I know what the “danger zone” is for vitals.  I never, ever want to ever go into the hospital, so I will rationalize every little symptom that in someone else, I would advise them to see the doc.

And again, I know.  Therefore, I will Dr. Google myself to oblivion.  I will wonder if the little twitching of my eyelid means a tumor.

One good aspect is that I am much more empathetic toward my patients.  I rarely let on that I have my own health issues unless I am directly asked.  But I tend to understand chronic pain a heck of a lot more than some of my colleagues, probably because I experience it.  I have been on some of the meds my patients are on, and I truly understand when they describe the “tingling” experienced with Topamax or the “zombie sleep” of Trazodone.

I understand the frustration when docs are patronizing, when they talk down, when they blow off patients.  And I’m in the same field as they are!!  I can’t imagine what patients feel!!

So there are some pros and cons from being a nurse and being chronically ill.  But I’m glad I have my experience to back me up.

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.

 

 

K: Kickboxing and krav maga

 

Despite my aversion to exercise, see post here, I do love kickboxing.  I have done it twice.  Each time I loved it.  And each time I couldn’t walk for days.  Or I could walk, but very painfully.

My husband loves boxing.  He is the very athletic without trying type.  Grr.  He chooses to channel his emotions physically, through running, boxing, etc.  The story of how he roped me into it can be found here.

What I like is how it makes me feel that my body isn’t useless.  How I feel that I’m not defective.  That my  muscles and bones and joints and tendons can all work together like they are supposed to.  I don’t feel sick in the one hour that I am trying to keep up with the class, although I’m sure I look pretty sick.  In my head I look like one of those MMA chicks.

Also, what is important for me as a rape survivor, is that I feel like I could defend myself.  I feel like, if I were in a situation again where I was powerless, I could do something to protect myself.  That is so important to me.  I do still have a goal of actually attending krav maga classes one day, just right now financially and health wise it is not realistic.  Hopefully one day I can get to a place where I can make that happen physically/financially etc.

The exhaustion from that kind of exercise is different from the usual exhaustion.  It is a PRODUCTIVE exhaustion, if that makes any sense at all.  Normally, just walking around all day exhausts me.  But that kind of exhaustion makes me feel like I’ve earned it.  Like I’ve battled for it.

It’s on the goal list…

J: Jokes

 

If you can’t joke about chronic illness every once in awhile…it will make the journey much more difficult.  So here are some funnies:

 

 

 

 

 

 

 

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.

F: Fibromyalgia

 

From the mayoclinic.com:

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

AND IT SUCKS.

Here is a pic of “tender points”:

These are specific locations on the body of most fibro patients that, when pressed, can elicit excruciating pain.  If a patient has pain in a specific amount of these locations with a specific amount of pressure applied, it is indicative of fibro.  I didn’t know I had these tender points until a rheumatologist came to visit me while I was hospitalized with c.diff and they were trying to figure out my other mysterious symptoms…fatigue, muscle weakness, insomnia.

The doc walked up to my bedside followed by a few “fleas” (doctors in training), he asked a few questions and then pressed the inside of my elbow.  I jumped out of my skin.  The pain was excruciating.  Electric.  Stabbing.  Burning. And it lingered long after he stopped pressing on the spot.  And that was the last piece of how I was diagnosed with fibro.

Pain and fatigue are the big fibro symptoms.  And they are usually without merit…meaning that just everyday activities is enough to cause pain.  But fibro causes some weird things too.

Sometimes when I itch my skin, it causes severe, lingering pain.  Insomnia is a big deal as well.  You would think that someone with major fatigue problems would be able to sleep…but NOPE!! I also occasionally get IBS like symptoms and nausea.  I am also VERY chemically sensitive.  Especially to smells.  Febreeze is my enemy.

The good things about fibro? After half a decade with this illness, you can see some silver linings.  I have learned to slow down.  I appreciate the little things in life.  The basics.  If I have a roof over my head, food in my belly, a safe environment, and people that love me, I’m pretty good.  I don’t need a new purse, an expensive vacation, new clothes, the newest phone/gadget/etc.

I may complain a lot on this blog, but I do try to see the positive.