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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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…

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.

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.

 

 

F: Fibromyalgia

F

 

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”:

fibro

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.

B: Balance

B

 

Balance is something I struggle with…as a mom, as a nurse, as a wife.  I guess most people struggle with this, but it is harder when your body doesn’t listen very well.  I have had chronic illness for nearly 9 years, and I still struggle.

But I have learned some valuable lessons:

Take care of your body.  Learn what your limits are.  Right now, my tolerance for shopping is about an hour in the grocery store at ultimate health (think 100% life on video games), probably 30 minutes when I’m flaring or stressed.  I’m at about two to three stores (for about 20-30 minutes) if clothes or Christmas shopping.  I have to adhere to these rules or I run the risk of outpacing my energy sources and crashing.

Rest means REST!!!  I don’t have to sleep, although sometimes that is helpful, but keeping my body quiet, in a peaceful and quiet location for at least an hour is optimal.  That means no interruptions, no getting up constantly to serve a certain seven year old, no putting out petty fires that other adults can’t seem to solve on their own.

Understand that your body is different.  Your body doesn’t function the way it once did before.  It no longer has the endurance, the ability, the properties to hike all day, to go on a 12 hour shopping spree, to do the things it once did.  You may be physically able to withstand these activities, but the payment in terms of recovery is often more than the enjoyable activity in the first place.

Learn your body, learn your limits.  Strive for balance so you don’t spend your new life miserable, in pain and in bed.

A chronically ill Christmas

The holidays mean something completely different for those of us with chronic illness.

You know you're from Pittsburgh when Troy Polomalu is enshrined on your tree

You know you’re from Pittsburgh when Troy Polomalu is enshrined on your tree

Someone who isn’t blessed (cursed?) with one of these lovely diseases often finds themselves stressed after the holidays.  All the hustle and bustle, the shopping, the cooking, the traveling the entertaining usually takes a toll on the healthiest of our society.

Imagine what this time of year does to someone with an illness that is negatively affected by stress.

Merry Christmas!!

This is my 8th year celebrating while sick.  The first one was absolutely awful.  I could barely drag myself out of bed.  And when I did make it to my family’s annual holiday party, I was ridiculed, put down, cruelly made fun of because I couldn’t help with the clean up.  That is why I live 1500 miles from said family.

I have learned over the years to pace myself.  To not get so damn ambitious and try to do EVERYTHING that is associated with this time of year.

As most people with chronic illness know, just leaving the house can be an ordeal.  The crowds at the mall or a store can just suck the energy out of you.  For me, it seems the larger the crowd, the more my energy is drained.

I have learned to do as much shopping as I can online.  I have had an Amazon Prime account for years, and that helps tremendously.  Its $80 per year, but it pays for itself.  Being that I have many relatives far away, including my bonus son, just eliminating the chore of going to a store, fighting with the crowds, then going somewhere else and shipping said gift is lifesaving.

My bonbon tree.  The colored ones are oreo and the brown ones are peanut butter.

My bonbon tree. The colored ones are oreo and the brown ones are peanut butter.

I also plan my baking and cooking carefully.  I do a little bit at a time.  For instance, I baked a bunch of sugar cookies for Sunshine’s class party.  I doubled the recipe so we’ll have cookies here for Santa.  I cut out and baked the ones for Sunshine one day, then decorated them the next.  I froze the dough that I’m going to use on Christmas Eve.  I’ll cut out, bake and decorate those in phases too.  It all doesn’t have to be done at one time.

And no matter how much I wanted to make a gingerbread house from scratch this year, I conceded that it probably isn’t going to happen.  So I bought a pre-made gingerbread house that me and Sunshine can put together.

I also made my dessert for Christmas dinner WAY in advance.  Bon bons.  Fairly easy to do, just a lot of mixing.  I really need a good hand mixer.  So those are chilling in my freezer until Christmas.

I’m trying to pace myself.  My parents had a party yesterday, and I did more than my part.  I cleaned, cooked, mixed, entertained.  But I did it all on my terms.  I rested very frequently.  I would do something for 10 minutes straight, and then rest for 20.

My FAVORITE light display

My FAVORITE light display

I divided the wrapping over a series of weeks.  I started shopping in November, and as of right now, everything is wrapped and hidden.  I did a few things one day, a few things the next.

I have gone out with Sunshine on three separate occasions to look at Christmas lights.  I picked the warmest nights and we spent some much needed “Mama-Baby” time just driving around and admiring the displays.  Its the little things that make this time of year so special for me.

I am nervous about traveling to a colder climate this week after all the excitement.  After 20 minutes of sitting in one position, I freeze up and it’s hard to move.  I’m not looking forward to a three hour flight.  But I get to see my bonus child and my husband’s family and friends, so it’s worth it.

So I’m learning.  Its been difficult over the years, but pacing myself seems to work.  And it  is a hard lesson to learn.  But each year it gets easier.  I don’t have to do EVERYTHING that is associated with this time of year.  I don’t have to do the parades, the insanity, the mad rush.  It’s my own.  I do it to the best of my ability.

Merry Christmas, Happy Holidays, Happy Saturnalia or whatever you celebrate this time of year.  Enjoy the season.  Enjoy your loved ones.  Don’t kill yourself trying to make the “perfect” holiday.  Your health is more important, and you will enjoy it more if you aren’t completely sick for the holiday.

Thank you all for the kind words you have shared with me.  I really appreciate it.  Those of us blessed (cursed?) with these types of illnesses need to band together because no one else understands.  Take care of yourself.

postcard

“Good” pain

Things in my house haven’t gotten any better.  If anything, they are worse.  Which is probably why I’ve been to the gym four times this week.

And it HURTS!!

I don’t think its pulled muscle pain, more like “I have fibro and I’ve been to the gym” pain.

With fibro, any kind of muscle exertion hurts more and way longer than it would to a “normal” person.  Which is probably why the past few days have been so much fun.

I’m taking a break tomorrow and probably on Sunday, I’ll get back to it on Monday.

Its nice to know that it is possible to have this level of physical activity with fibro and not keel over.  The pain isn’t fun, especially in my quads.  Getting up to standing from sitting is awful.  I’ve been popping Tylenol for the past few days.

But it feels really good about halfway through my workouts and for a few hours after.  I come home right away and take a hot shower.  And I hydrate.

I’m sleeping better too.

So I’ll probably continue this trend.  It gets me out of the house, it helps with the aggression I’m feeling toward people in my household, and its having good side effects for my health.

Note to self: you are 31, not 21

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

 

Ugh.

I’m recovering.  Again.

I went out Friday night to celebrate my friend’s recent liberation from an oppressive, douchy, Kentuckian regime.  It is also race weekend in Austin.  Perfect time to meet people from all over the world.

And one of my favorite bands on the planet was playing a free show.

So I ventured out, in my cowboy boots, into downtown Austin.  The boots were a mistake.  I always say that, yet I always like wearing them.  Ugh.

The concert was amazing.  Music is a very potent part of my life, and the Los Lonely Boys (especially their debut album) have played a significant role.  I have seen them five or six times in concert, and I love it every time.

After the show, my friend and I hightailed it up to 6th street to party with the thousands of people in town for the race.  Apparently Austin has the only Formula 1 raceway in the United States, one of three in this hemisphere from what I understand, so race weekend is a big deal.

We met Brits, Aussies, Ruskies, Frenchies and Mexicans from Mexico.  Not to mention the domestic partiers who were just in town to party and had no clue it was race weekend (California and New York).

It was a blast.  I love talking to people from other parts of the world. I have no idea how many times I said “I would love to go there” about someone’s hometown.

I learned that French women aren’t all thin, Brits hate being called “Harry Potter”, and the Mexicans from Mexico are completely different from the “Texicans” here.

And we were treated to several different impression as to what they thought all Texans were like.  Think “yee haw” and guns.

I also learned that I shouldn’t do jagerbombs.

Or shots of tequila.

What is very interesting to me is that 10 years ago when I was supposed to be doing this stuff, I was under my own oppressive, abusive regime (but one from Fayettenam, Pennsylvania).  He was nearly a decade older and had already “been there, done that” so therefor I was not permitted.

It is wonderful to have the freedom, support, and love of my husband that I can go out with my friends, make some poor health decisions, and not be guilted into oblivion because of someone’s jealousy and insecurities.  My husband texted me “have fun honey, be safe”, whereas my recently liberated friend was STILL harassed via text by her ex.

And I reciprocate as well.  Everyone needs time out to relax and have fun.  And alcohol isn’t evil in a safe environment.

We were completely safe, took the train down and a cab home.  And due to the jagerbombs (Jagermeister and Red Bull) I twilight slept for maybe three hours.  Total.  My heart didn’t stop pounding until last night.

And I was unable to get my tattoo.  I was honestly concerned about the blood thinning properties with the alcohol.  So it has been rescheduled.  And I will definitely post pics of the artwork.

Lessons learned:  Red Bull is the devil.  Cowboy boots should not be worn down town.  Race week is fun and I have an amazing friend.  And I’m getting OLD!!