Day 17

Where do you work?

Well, I’m currently looking for a job.  I had an interview today, but I’m not sure I’ll get it.

I am a nurse.  I have been a nurse for 10 years.  I have a wide variety of experience, from peds to ICU.

After my first brush with chronic illness in 2005, I was advised to stay the hell out of the hospital.  I contracted one of those lovely hospital associated infections and was sick for 9 months.  I have been told repeatedly that my immune system is not normal and I should minimize my exposure to horrific illness as much as possible.

So the hospital and hospital like care centers are out.  That is probably 80% of the field of nursing.

I have done “telephonic nursing”.  I absolutely loved it.  I was able to talk to people all over the country about being healthy, their chronic illnesses and medications.  It was very rewarding.  I left that job when I left my ex husband.  And it killed me to do so.

Since I’ve been here in Texas, I have done public health nursing, which I found boring, and then I went into hospice.

I love hospice care.  I can  handle it, which many nurses can’t.  After my years in the ICU, where I had to disconnect vents, see people perpetually kept in a state of limbo between life and death, providing a “good death” for my patients is key.  A “good death” is where the patient passes away at a location of their choosing, usually at home, and without pain or discomfort.  Patients get that with hospice.

Many times they are diagnosed with something like cancer or lung disease and they decide to forgo all treatment and focus on quality of life rather than quantity.  I have seen patients do some amazing things with the time they have left.  It is very rewarding, very spiritual, very emotional.

My problem with hospice right now is that I don’t think I’m well enough to carry a full caseload of 12-18 patients.  Each patient needs to be seen once a week at the minimum.  Sometimes more.  And the Austin area is pretty spread out.

When I got sick with the autoimmune disease, I was seeing 14 patients in a 50 mile radius.  I was doing 100+ miles per day on my car.  I was also working call on the weekend.  I see now that working so much probably triggered my disease.  So I’m trying to avoid that.

I’m looking for anything 16-20 hours per week that is office based, home based, in home health.  Currently my car is pitiful,  but hopefully we will be getting a new ride soon.

I am applying for telephonic nursing again, office jobs, hospice “as needed” nursing.  Hopefully I get something.

Anyone need a nurse?



There are all kinds of guilt.  Catholic guilt, Jewish guilt, survivors guilt.  What about chronic illness guilt?

Today I am really feeling it.  My husband is taking steps to get a better job (full time, with benefits) so that we don’t end up moving in with my parents.

The thing is, he will also be working at his current job during training.  He will be doing training in the morning, and his current job in the evening.  That’s 12 hour days for him for the next month.

This past weekend was a whirlwind of activity.  Egg hunts, hockey games, the annual Easter get-together on my uncle’s ranch, which is an hour away.

I was exhausted way before Easter.  I spent most of the time yesterday just sitting on the couch at my uncles.  I really had a hard time even functioning yesterday.

So the exhaustion carried over to today.  I forgot to set my alarm, and Sunshine slept through hers, so she missed the bus.  That means my husband had to take her to school.  It was not a pretty morning in this household.

I feel like I could pass out now.  But there is laundry to do, a mountain of dishes, various bits of the Easter holiday spread throughout the house.  Candy here, an egg (plastic) there.  It looks like a Easter tornado hit this apartment.

Plan is for me to go back to sleep for an hour or two.  Then start trying to whip this place into shape.

The guilt.  I feel insanely guilty about being sick.  Down to the pit of my stomach, I feel awful.  The plan was that I would work full time so that my husband could go to nursing school.  I haven’t been able to return to work, so I lost my job in January.  Along with my  benefits.  I was pulling the benefits for everyone.  And I couldn’t get better in time to save my job.

His mother passed away a week before the end of the summer semester last year.  Even though he had a near 100% in the class, they would not allow him to do the final when he got back to Texas six weeks later.  So he now has to take this class over and THEN he can apply to nursing school.

I’m doing everything I can with regards to applying for assistance, attempting to generate some income.  Saving the little money we do have.

But the words of my ex-husband rings very loudly through my skull “I fell out of love with you when you got sick”.

I’m terrified that history will repeat itself.  I am overweight, I look like the marshmallow man from Ghost Busters.  I’m not just fat, I’m swollen.  My face is swollen, my feet, my fingers and my abdomen.  I now have really bad acne.  I hate the way I look.  Its to the point that I can’t look in the mirror anymore.

And I can’t get the house into a state that is acceptable to my husband right now.  He is a little OCD.  He has explained time and time again that the state of the house influences his anxiety.  If it is cluttered and out of order, he feels cluttered and out of order.

The problem is, I learned years ago with the fibro that it is virtually impossible for me to be on top of everything at all times.  It goes back to the gas tank theory.  I only have so much energy.  I would rather spend that energy on playing with my daughter or attempting to generate income.

Yes, the dishes need done (that is a priority) and food needs to be cooked.  But in terms of dusting, running the sweeper, laundry….I feel those things can wait.

So my husband will be a crazy ball of stress for the next month.  And I can’t keep up with the things that keep his anxiety at bay.

I feel such intense guilt.  Guilt that I can no longer produce, guilt that I can’t be the wife I would like to be.  Guilt that I look hideous.  Guilt that I am sucking up all of the money we do have to pay for meds and doctors.  Guilt that I can’t just push through it and do it all.  That I’m not strong enough to just overcome this illness.

I’m not terribly religious, but I’m starting to pray that I get through this.  That we get through this.  That things will be better in the coming weeks and months.

Positive thinking:  I got to see my family over the weekend.  I hadn’t seen most of them since Christmas.  It just feels good to belong.  To be around people I have a common bond with.  I rarely get out of the house these days, so it was nice to get out, get some fresh air and a tiny bit of sun.

The other side

Dying at 30.  That shakes me to the core.

Another one of my high school classmates is slipping away as I type this.

For Qui

She has battled leukemia for over three years.  But its not the leukemia taking her life, its an infection (e. coli) that gained entrance via a bedsore, and due to her compromised immune status and all the underlying issues, it spread rapidly and caused septic shock.  Now the infection is in her brain and will soon spread to her lungs and heart.  All aggressive treatment has been stopped and they are “making her comfortable”.

I know what all of that means.  I know what is going on right now.  I’m a hospice nurse.

Although I am 1500 miles away, I can feel the pain of the community.  My best friend from childhood, lets call her Pooh, went to see Qui in the hospital yesterday.  Again, I flipped into nurse mode as I prepped her before she went in, what she might see, what she might not see, why Qui may not be getting tube feedings or fluid, why she may be talking funny.

A year ago, I was doing the same thing, only it was my family doing the hospice dance.

My paternal grandfather had a series of unfortunate health events last year.  It was one catastrophe after another.  At 80 years old, he insisted on living alone and living 5 hours away from his kids.  Yes, he had some family nearby, but not the sort that would religiously check on him.

A fall caused a brain bleed and required brain surgery early in the spring.  He came up here for rehab and stayed until late summer.  Then he insisted on returning to his home, and living alone.

He had a massive stroke in October.  Brought on by a completely unnecessary medical procedure.  Luckily, my aunt was staying with him at the time, or who knows when someone would have found him.

They attempted to rehab him from the stroke, but it was futile.

I was the one visiting the day the doc came and suggested hospice.  I called my dad, he called his siblings.  I was there for that meeting.

It is no fun being on the flip side of the hospice coin.  Suddenly, the doctor is giving you the speech that you have given to so many others.  Words like “comfort” and “end of life”.  Suddenly, its real.  You will lose a family member.

I have always thought that hospice was a gift.  You get a chance to say your goodbyes.  You can have “closure” and say all the things you wanted to say before someone passes.  Whereas in sudden death, all of that is left unsaid.  Its not always like that.  In my grandfather’s case, he wasn’t exactly coherent most of the time.  He couldn’t reply to questions, he couldn’t carry on a conversation, and he was extremely confused.

He made it difficult.  He lingered for six weeks.  And in those six weeks I think I aged about five years.  As the family hospice nurse, I was expected to know everything: “can we feed him?”, “can we give him this medication instead?”, “why is he making that face?”, and the worst one “why hasn’t he passed yet?”

He couldn’t eat because the stroke affected his swallowing ability.  Everything he ate dumped directly into his lungs.  But he was confused and thought we were torturing him.  He told family from out of town that we were starving him.  Then we figured out that he didn’t want to “eat”, but just wanted a “taste”.

He pushed my dad and uncle away and doted on my aunt.  That was much like his entire life with his children, but seeing it at end of life was difficult.  I have seen it plenty of times in my patients, but in your own family, broke my heart.

Family I had never met before came in from all over Texas.  I heard stories about my grandfather and grandma, saw pictures.  One second cousin told me that my grandpa was her inspiration to go to college and make a better life for herself.  So many mixed emotions for me.

Working all day with my own patients, trying to juggle texts and phone calls from my family during the day regarding my grandfather, and visiting him at night just took its toll.  I stopped visiting my grandfather so much.

I had said what I needed to say to him prior to a trip I took with Sunshine for her birthday to Disney.  I was at peace.  I figured if he passed while I was away, I would be ok with it.  He didn’t, but after I had made my peace, I visited less frequently.

I saw him the day before he passed away.  By this point, he was sleeping 20 hours per day, essentially a light coma.  He would talk about my grandma being present (she passed in 2004) and smelling her perfume.  At times he thought that I was her and talked about her beauty.  Again, I have seen this many times in patients, but experiencing it from your family is amazing.

When it was time, he declined rapidly.  We received a call from the nursing home that he had an “event”, and he was found with labored breathing during morning rounds.  They felt like this was it.  Using my experience, I did a quick assessment and confirmed their suspicions.  We called his hospice nurse (of course I wasn’t assigned to him).  And everyone who could, made it to his room.  We shared stories about his life.

My head was on his chest when he passed away.

I gave the eulogy at the funeral.

I know what Qui’s family is going through.  I know it too well.  Just sitting there by her bedside, watching each breath, counting respirations.  Looking for any sign that she is slipping away.  The odd sense of anxiety, wishing that it would be over, but not wanting her to go.  I call it the “death watch”.

Qui kept a CaringBridge website to update her MANY friends and family during her battle.  Her last personal entry brought me to tears when she wrote that she knows that she is dying.  I have always wondered how a person can deal with that kind of news.  I worked with terminally ill patients for years, yet I have never asked that kind of question directly.  How can someone process that they will no longer be living?

Facebook is humming, Qui took full advantage of technology to talk about leukemia and bone marrow donation.  She will leave a legacy behind.  So many people learned about cancer, leukemia, bone marrow transplantation because of her.  She will live on.

Return to work?

Doc cleared me to return to work.

But at a much reduced level.  20 hours per week.  Limited driving.  Limited lifting.  Limited standing.

I informed HR of the preliminary findings of the doc, mainly because HR was breathing down my neck about it.  I understand they have a nonprofit organization to run, and that my territory isn’t easy to cover, but don’t get on me about making demands of my physician.  Don’t say “find a way to get your doctor to finish your paperwork and fax it to us as soon as possible”.

I did ask my doc, she looked at me and said “I do have other patients to see today”.  I felt so stupid.  Of course she has other patients.  She isn’t my personal one-on-one physician.  Then I felt like HR was interfering with my relationship with my doc. And I have a really nice, really understanding but encouraging doc.  She takes the time to listen, to assess, to really do a thorough job.  And because of the pressure exerted on me to “find a way to get the paperwork” I run the risk of damaging that relationship.

So yesterday afternoon at the prompting of HR I called the doc’s office and asked about the status of my paperwork.  The receptionist was nice enough to go back and ask for me.  He said that the doctor had dictated the information on the restrictions, but it has not been transcribed on to the report yet.  Being that it was 4:50 pm. he did not think it would get completed that day.  He did say that it should be completed the next day.

I emailed HR with the new information and did not receive a reply.

So here I sit at 8:15 am.  Waiting.  I was told a few weeks ago that my employer would not create a new position for me.  And I’m not sure where I stand legally.  I am out of FMLA.  If I need more time off I’m basically fucked.  I have an appointment with the cardiologist next week.  Who ever I talk to today, I have to make that clear, that my health comes first.  That was not my  motto earlier this year and I paid for it dearly.

I ignored signs and symptoms that my health was failing since about a year ago.  I thought that it was just my fibromyalgia flaring and I treated it as such.  My grandfather’s health started failing dramatically around a year ago and I thought it was stress from that situation combined with more stress at work taking a toll on MY health.  My grandfather passed away right after Christmas.

I continued to ignore the signs and symptoms throughout the spring.  I was extremely fatigued, I was running low grade fevers.  My joints started to ache.  I brushed it off because I was working massive amounts of overtime to pay for my dream wedding.

Getting closer to the summer, I would just collapse on the weekends.  I would sleep all day.  My migranes increased in frequency.  I was just barely surviving day to day.  My work suffered, my relationships suffered.  Until my eyes exploded (see the post about that here).

And now here I am.

I love my job, when I’m healthy and can physically do it.  I’m a hospice nurse.  Hospice means that people have been diagnosed with a condition that if left to run its course, will likely cause their death in six months or less.

I have been a nurse for 9 years.  I love teaching people about their bodies, I love teaching families how to care for their loved ones.  I know I can use my talents somewhere.  And that is what I think it is, a talent, a calling.  I have no qualms about people, their bodies, bodily functions.  I can talk to anyone at anytime about anything.

I think my dream job in nursing right now would be to stay at home and to health education and advocacy/coaching via the phone.  With a set caseload that doesn’t rotate so I could build a relationship with patients.

I had a telenurse job before, but the calls were random and I couldn’t build a relationship with the patients.  I know I can make an impact, I just might not be able to physically do what I used to do.

This is funny, I described my former workload to my doc and she said “well, I don’t think anyone healthy can do that”  Thanks Doc!!

I think I got off on a tanget there.

Its 8:40 am.  No call yet.

Anxiety building…


**Update 10/13/12**

I’m still in limbo.  My doctor’s office was kind enough to send a letter to HR stating my restrictions and that FMLA paperwork was pending.

Not good enough for HR.  On 10/11/12 at 3p I received an email again telling me to call my doctors office and find out exactly when the FMLA paperwork will be completed.

On 10/12/12 I sent an email to HR lady and I received an “out of office” reply.  I called the main office and spoke with someone else in the office and explained the situation.  She stated that anything relating to my situation would be handled on Monday anyway.  I did have to drive to the main office to drop off a check for my health insurance.  A near $500 dollar check that my parents were kind enough to furnish.

So I went in to work for the first time in nearly 3 months.  I was nervous because of my appearance.  My left eye is droopy for some unknown reason, my face is puffy due to the steroids, and again I look pregnant.  I did see some of my coworkers and one good friend in particular who offered some much needed support.  She seems to think that the powers that be will not accept my limitations and will just terminate me, which is within their rights.

I would just like to know either way.  Either I have a job or I do not.  Either I have to apply for government assistance or I do not.  The waiting sucks.  All of this just sucks.

Oh!! The insanity!!

Hi!  I’m M.  I turned 30 this year.  I can’t believe it.  I have no idea how I got here.  Where did my 20s go??  Who is this little girl and why is she calling me Mommy??  This year has been a whirlwind.  When I was 12 or 13 I would look in the mirror and try to imagine what I would look like at 18.  At 18 I would do the same at 21.  I never pictured 30.  Ever.

So yesterday was my half birthday.  Meaning halfway to my next birthday.  Almost 31.  Its still not sinking in.  I guess that’s why I’m blogging.  There are so many themes to my life, so many issues I want to just get out of my system.

I’m currently unable to work.  I’ve had this undercurrent of illness to my life, since I was a teenager, and again it has flared up.  Right now my life is uncertain due to my health condition and I have plenty of time to sit here and think…think…think.  Can you tell I’m a mom?  That was from “Blue’s Clues”.

Despite what is going on, I am very happy with my family, my husband, my daughter, where I live.  I was born in Austin and raised in Pittsburgh.  I left a bad marriage three years ago and moved back to Texas.  I married a longtime friend in June.  Our love story is worth it’s own post at a later date and time.  I have not been back to Pittsburgh in three years.  I have my own reasons and I’ll probably blog about that too.  I am just so amazed how different our country is from region to region.

I am a nurse.  Nine years now.  Most recently in hospice.  That plays into my spiritual beliefs.  I don’t go to church, I was raised Catholic and I  no longer believe in that doctrine.  I’ve tried different churches when I moved here.  No dice.  I can’t go to churches that openly condemn other people just because they are different.  So the search continues.

Since I’ve been more ill than usual I have been reading constantly.  I fear for the life of my Kindle, because it is getting obese and being forced to work late nights and long hours.  I am always interested in a good story.  So I will blog about my favorite books, what I’m currently reading, etc.

And finally, I can’t ignore what I was trying to ignore.  I was trying SO HARD to ignore this years presidential election.  Really I was.  My parents are extremely RED.  I mean, my mother listens to Rush.  I used to drink the kool aid too.  I have yet to register to vote in Texas, but I plan to soon, and I will register as an independent.  I don’t particularly like either candidate, and at this point in time, I’m considering writing in my cat, Punkin, for President and my daughter’s stuffed cat Minnie, for veep.  I do have very strong feelings regarding women’s rights, sexual assault, immigration, healthcare, foreign policy.  I know my history.  I know the constitution.  Sometimes I would like to keep my head buried in the sand, but it took that idiot Akin in Missouri to get me really pissed, as a nurse and a woman, and realize that we are letting men and politicians have a say about a body part that they do not possess.  INSANITY!!!