A new member of the 47%?

I have always prided myself on graduating with a profitable degree at age 21.  I am a registered nurse.  While my peers were still in college, most attempting to get now worthless degrees in areas like “communications”, I graduated with a job and have worked steadily ever since, with the exceptions for the time I was ill and had my daughter.

I have worked since I was 16 actually.  I worked each summer as a lifeguard.  I worked 16 hours a week throughout nursing school.

I have nursing experience in pediatrics, critical care, hospice, telenursing, and pain management.  I have worked in doctor’s offices, pediatric mental facilities,public health, huge hospital systems, and non-profit entities.  I have never had the luxury of “choosing” not to work.

I have always been the breadwinner in each of my marriages.  In my first marriage, my ex husband resented that fact.  At one point, he was able to pick up benefits and I was able to switch to more lucrative agency nursing.  In this marriage, my husband’s job does not offer benefits.  The economy is not what it was in 2005.

I state all this because I am not a “welfare queen”.  In fact, my politics were more toward the red side until I started working with illegal immigrants and the profoundly destitute during my last employment as a hospice nurse.

Why do I say “last employment”?  Well, my health condition is such that I can no longer serve in that capacity.  My main doc has determined that I can work 20 hours per week in a limited capacity.  I’m not sure I could even do that.  She has also determined that I have mental limitations, i.e. difficulty concentrating, “mental fog”.  I cannot sit or stand > 30 min.  That’s true.  I seem to express myself better in writing.  Granted, I usually write these posts over a few hours.

So currently I’m on a “medical leave”, which means I can keep my current insurance (while paying for it out of pocket), until the end of the year.  I’m still waiting on the official paperwork.

The voluntary short-term disability policy through work that I was paying in to has decided that they think my sarcoid condition might be “pre-existing” so I spent hours today rounding up information on all the doctors I’ve seen in 2011 (none were rheumatologists, none were retina specialists).

I just don’t like that feeling that someone feels that I’m being deceptive.  Look at the name of this blog.  “True life is stranger than fiction”…I would have never thought in a million years that I would have developed something like this.  That I would be on frickin CHEMO.  To think that I would make it up to try and get out of work and to get my policy to pay for it is insanity.

I haven’t had any kind of income under my name since August.  To say it has been a blow to our family would be understating it just a bit.  We are looking at not making rent.  My parents have  been more than helpful financially.  But they cannot support my household and their own.

That’s where the 47% thing comes in.  I am seriously considering applying for social security disability at this point.  Also applying for any other benefits that I can apply for.  We literally have negative money in the bank at this point.  We have wiped out all meager savings that we did have.  My parents can no longer help out.  My husband has been applying for other jobs, but he is not getting any feedback.  Hell, I’m just happy he HAS a job.

*I am using a borrowed laptop (from my parents who have an ungodly amount of technological devices at their house) and the internet is <$40 and was paid last month.

Point is, I am not what the right is rallying against.  My mother, a staunch republican and tea-partier, is actually encouraging me to “apply for everything you can get”.  I’m sure if her fellow tea partiers knew what she was saying, she would be kicked out.  Ha!

I have been working hard since I could start working.  I have seen children come into this world and others leave it.  I have been puked on, bled on, peed on, pooped on, spit on.  I have compassion.  I have been with families as they have made the decision to terminate life support.  I have literally pulled the plug on those patients.  I have witnessed the most beautiful final moments of life.  I have helped ease pain of the sick and dying, regardless of income, ethnicity, age, religion.  I have educated teenagers, adults, families, the elderly about everything from sexually transmitted diseases to the dying process.

And now I’m sick.  There was nothing I did to get sick, and if you look at it, I originally got sick on the job, seven years ago.  I have followed the treatment recommendations of all of my physicians.  I am not “looking for a handout”.  I have paid into a system since I became eligible to work, and now I need help.

I despise the fact that I have a million and one hoops to jump through to access benefits that I have been paying into for just this exact situation.  That my husband has to sell his car so we can pay rent.  That I have to cancel doctor’s appointments because I can’t afford the $30 copay.  That I have to decide which of my medications are “more necessary” than others.

The medical bills keep piling up.  My insurance only paid “x” amount of this bill, I apparently owe the rest.  To get a needed operation for my daughter, it cost $1,500 up front.  You think I paid for it?  Child got her tonsils out for Christmas, thank you Mom and Dad.  And she really needed them out.  They were badly infected.  And don’t worry, she will have a good Christmas.  But I do see some black humor in her finding her tonsils in a jar under the tree.

I’m honestly just trying to keep my sight.  And to stay out of pain.  I would love to return to work.  I am bored.  But I can’t convey my ideas concretely enough through speech.  I stutter, I have brain fog, word finding issues.  Its severe.  And then the physical issues.  Pain.  Fatigue.  And then my eyes.  So frustrating.

I would like to keep my sight and not get evicted.  Is that too much to ask as a woman who has played by the rules all her life?

It has taken me two hours to write this post.

Halloween hangover

The morning after!

Well, it is the morning after Halloween. Sunshine definitely overdid it. Maybe she should have read some of my previous posts about overdoing it and conserving energy.

In true Sunshine fashion, she had a wardrobe change midway through the day.  First, she was Pinkalicious (from the books) and then she transformed to a fairy for the evening.

As for me, I slapped on some wings and called myself “The fairy of chronic illness”.

Sunshine’s friend came over and my dad took them both around the neighborhood to Trick or Treat.

My suggestion of  Sunshine going to just a few houses and then coming back to hand out candy was overruled (that happens a lot at my parent’s house, its like all rhyme and reason stops at the front door as well as Mommy’s rules).  She was out from 6 p.m. to 8 p.m.  In her teeny weeny costume.  Fantastic.

She was running around, yelling, singing, dancing, I just knew it would be trouble for me this morning.  And I was right.  I hate it when I’m right about these things.

Child woke up this morning and couldn’t swallow.  Face is swollen.  No fever, but her breath could rival a zombie’s.  She is not having the easiest recovery from this tonsillectomy.

So I gave her some medication, rocked with her for awhile until it kicked in and she was able to swallow.  And the pushing of the fluids  begins again.

She really wants to go back to school.  In the worst way.  She was also crying this morning and begging to go back to school.  I can’t send her if she can’t swallow.

My husband (her STEPfather) has volunteered with a program they have at the school to provide a positive male influence for the children.  Today is his assigned day to be in the class, help with drop off time, lunch, etc.  So he went even though she didn’t.  I am so proud of him.  So Sunshine really wanted to be there to show off her “Daddy”.

I guess she is like me.  When she temporarily feels better, she pushes it to the max.  She doesn’t realize she is overexerting herself.  And then she wakes up the next day worse than the day before.  Its this vicious cycle of one step forward, two steps back.  My poor baby.

As for me, I am further down the path of learning my limits.  I handed out candy, and that even zonked me.  Sitting in one position for two hours as it gradually got chilly did a number on my joints.  I was so stiff all over when I finally did move, I had to take a moment to unfreeze my joints so I could move properly.  And it was painful.

But the migraine went away yesterday afternoon.  I’m kind of in that after-haze of a migraine where it has the possibility to come back.  I definitely tempted my blood vessels and nerves by eating Halloween candy.  Chocolate is a well established trigger for me.  Oh and I ate a hot dog.  But it was nitrate free.  I should know better.

So we are taking it easy today.  I’m going to put us both to bed in a minute.  Sunshine doesn’t know the meaning of “rest”.  So I shall teach her.  The child does not need to be in perpetual motion.

I’m just not used to Sunshine being sick.  And it is very difficult to take care of a recovering child when you sick yourself.

But Sunshine did get A LOT of candy.  That she can’t eat.  Yum !

** I’m not that mean, I’ll save some for her.  But like all parents know, you have to “test” the candy and remove the “dangerous” items.  Namely Reese’s cups, Milky Way bars and Kit Kats.