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!!

 

 

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.

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 🙂

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 (!)

H

 

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.

E: Exercise

E

 

Yes, exercise is good for me.  But I pretty much hate it.  I am not one of these fitness nuts.  I have never been athletic.  I have always been a klutz.  But I do know that it helps what is wrong with me, and that sitting on the couch isn’t good for anyone.

But through experience, I have learned that going hard is not good for my body.  I have to start low and go slow.  I have to do low impact.  Even when I’m feeling better I have to watch that I don’t overdo it because I will feel worse.  Because then I won’t walk for days.

Yoga is good for fibro and autoimmune.  Walking is good.  Swimming is good.  Boxing is not good.  Neither is running.  Even the elliptical at the gym is way too high impact for me.  I have learned this from experience.  Painful experience.

I do have a goal of learning krav maga one day, but that is far off.  I know that I have to build up my body before I can even entertain that idea.

But it is spring.  It is a time of renewal.  And hopefully after the winter that never ended I will be back to yoga.