Euphoria

I don’t get to write many of these posts.

At this moment in time, I am pretty euphoric.

Had a fantastic day at the zoo with Sunshine, my husband and my mom.  It was a little chilly, but health wise I held up.  My plan of frequent breaks and rest stops seems to be working out.  Because of the weather, there was practically no one there.  I tend to get overwhelmed with crowds and lots of noise these days,  but we were able to stroll leisurely through the zoo with minimal difficulty.

On the way down (its about an hour and a half away), I did manage to give myself a migraine when I was trying to focus on the tiny screen of my camera to delete pictures to make room on my SD card.  But I took my medicine and the migraine (complete with nausea), subsided by the time we got there.  Score!

We had an early dinner that I actually had the appetite for (gotta love ihop) and on the way home all of the adults shared a “spirited political discussion” on the state of healthcare in America.  No one got upset, no one called names, voices weren’t raised.  Although I will continue to disagree with my mother’s position on access to healthcare, we were civil.

The main issue is that she feels the government has no business in healthcare.  I understand her point, but then consider my own situation:  I currently have no insurance, I have a chronic illness that could result in permanent blindness, and I have no access to a potential cure because I cannot afford it.  The medication I am currently taking to keep the inflammation in my eyes from progressing is not eliminating it completely.  It has been recommended for me to start on other medication to halt this disease, but I cannot afford it.  So I am running the risk of permanent eye damage because I cannot afford the optimal medication for my condition.  Because I can’t work to afford my health insurance.  I can’t work because of said health condition.  See the dilemma?

So we basically agree to disagree.

When I got home, my final Christmas gift was in my  mailbox.  The CD containing all of my professional wedding pictures from my wedding in June.

Just looking back on that day is enough to produce euphoria.  You can see the love we have for one another pouring off the screen.  I nearly cried.  We have been through so much in our young marriage, and just seeing that one perfect day (before I ballooned by 40lbs, thank you steroids) is such a strong reminder of our love and devotion.

Awesome day.  I shall savor it.

Does it hurt more when you are sick?

I make no secret of the financial hardships that go along with chronic illness.  Unless you are independently wealthy or have a spouse that has a good job with fantastic benefits, you feel it in the pocketbook.

I am doubly unlucky as I was the breadwinner and responsible for all the benefits.  I have been able to keep our benefits going.  Until now.

I received a call this evening from HR.  I owe them a couple grand or my benefits will be terminated immediately.  And rent is due next week.  I am not familiar with social services.  I have no idea how to apply for what, if I would qualify for anything.  I’m terrified that without health insurance, my docs won’t see me and I will go blind.

So I will make phone calls tomorrow.  See which docs will take medicaid, if I can get it.  I have already cut out most specialties, only seeing my eye doc, rheumatologist and PCP (if needed).  I have started tapering off some meds that might not be needed (who needs antidepressants anyway?) and hoarding other ones.  I am so happy I got my second opinion a few weeks ago.  Just waiting on results.  If he recommends another treatment, I just won’t be able to pay for it.

I still have yet to get other screening tests that have been recommended to rule out sarcoid in other parts of my body.  I need an echocardiogram and to follow up with the cardiologist.  I still have runs of tachycardia on a daily basis.  But I can’t afford the coinsurance on the test, nor the copay for the visit.  I still have horrific reflux (probably a result of the prednisone) but can’t afford the procedure to examine my esophagus for damage that would diagnose it as such.  So I occasionally take an over the counter medication that does NOT interact with the chemo.  I cannot afford a GI consult for the occasional bleeding from the other end.  Most likely brought on by the massive amounts of naproxen I was ingesting during the month when I was taking hormonal birth control as an experiment.  I have been told several times by my retinal specialist to see a GI doc, because he sees “bear tracks” on my retina which is indicative of colon issues, but I just can’t afford it.

So until I start vomiting or actively expelling blood in another form or pass out and don’t wake up, those things will be on the backburner.  And I thought the focus was on preventative medicine?

What really hurts is what happened after I got the insurance news.  For the past few months I knew that this was possible.  So I have been looking in to the issue.  As I thought, a person is not eligible for benefits from the government until they are actually without coverage.  So I cannot put myself or my daughter on medicaid until my insurance is officially terminated.  I cannot apply for unemployment until I am officially unemployed.  I cannot apply for other assistance while I still officially make on paper (last year’s income tax returns) what I am supposed to make, even though I haven’t had a paycheck since August.

My mother doesn’t understand that.  At all.  I called her after I received news that the worst case scenario regarding health insurance had happened.  I was looking for her to be my mom.  To comfort me, to help me sort things out, as my husband was at work (he is working seven days a week now).  I was not looking for a handout, and I stated that explicitly. After I told her the situation and explained to her (again) that I couldn’t apply for benefits until it became official, she said “well, I don’t know what to do then.  Cry to your husband, he’s the one who voted for Obama”.

And I hung up.  In tears.

Are you kidding me?  Really?

That hurt.  Bad. Like to the bone, bad.  And I hate crying in front of Sunshine.

I understand that they have helped tremendously.  I heed their advice.  But there are some things that I simply cannot do.  I am not going to lie on government documents because she wants me to.  I can’t make my former husband get a good job and put my daughter on his insurance.  I can’t make the economy better.  I can’t magically wave a wand and get healthy and return to my prior, income-producing self.

This isn’t the first time my mom has been cruel or hurtful.  This is right up her alley.  And I will not expect an apology either.  That’s just not in her nature.  She prides herself on being “brutally honest”.  Emphasis on the “brutal”.  I just think I deserve a little compassion.  Just a tiny little bit.

I’m not in the greatest shape right now.  Qui died this morning.  I’m terrified of my own health condition advancing and dying young like her.  I did the methotrexate last night.  So physically I feel like I’ve been hit by a truck.  Only with vomiting.  And since its the middle of the week, I have Sunshine with me all evening, so I can’t just sleep it off.  (My schedule was thrown off by the pharmacy, they didn’t have the methotrexate when I called in for a refill, I guess they don’t stock poison).

And for fun, lets add some more financial insecurity and a dose of my mother’s biting “advice”.  Gotta love the GOP right?

It is not good to be me right now.  Going to lose myself in literature.

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.

Poly Tics (many blood sucking insects)

A disclaimer here:  I didn’t meet the deadline to get my voter registration in to the county in time for this election.  So my opinion basically doesn’t count.  I was going to go third party anyway.  I have been told that both equal the same anyway.

I find a few things attractive about Obamacare, and I have not actually read the bill, just things I have heard.  Of course, from a job security point of view, having a job for the rest of my life is appealing.  And I’m honestly scared with the pre-existing conditions thing.  Cause I’m screwed if any insurance plan tries to use that against me.  Also I’m on the verge of losing my coverage if my employer decides my physician restrictions on activity do not fit their demands for my position.

If you hear some conservatives tell it, namely people in my family, people who don’t have jobs or don’t have jobs that come with insurance, made poor decisions in their life and they get what they deserve.

What about me?  A more than likely genetically based autoimmune disease on top of another quasi genetically linked neuromuscular syndrome.  I’m not fortunate enough to have a husband with a job that provides insurance.  We are lucky that he has a job.

I make it a rule not to discuss politics with my family.  We just end up yelling.  My politics started to change when I got sick. When I started realizing how difficult it is in the “real” world, outside of mommy and daddy.  It was cemented in this last job when I started to work with the truly impoverished, people that lived in storage sheds next to the highway, the undocumented.  Amazing what people go through that a certain segment of our society has no clue about.

I may end up being part of the 47% soon.  We are more than struggling to make ends meet.  I have yet to get a short term disability payment from a program that I have paid in to through my employer.  Can you say “red tape”? I’m not sure on what my odds are on getting unemployment if I cannot return to my former position based on health.

My other thought on politics involves my uterus.  It is my opinion that those without the parts shouldn’t have a say with what to do with them.  Currently in my state, if I should elect to end a pregnancy, if medically necessary (as with  my health) or for “birth control” (that is such a myth) I would have to undergo a transvaginal ultrasound and be forced to look at the image and listen to the heart beat if present.  I’m sure the men who created and voted on this law have never had to undergo anything this uncomfortable and invasive unless they have bladder issues.

Think of that word, “transvaginal”.  Because early pregnancy cannot be effectively seen by traditional abdominal ultrasound (because it is a bundle of cells!!!), they use a phallic type probe that is inserted into the vagina in order to confirm pregnancy and determine gestational age of pregnancy. Most women know by 8 weeks if they are pregnant (don’t count the idiots on “I didn’t know I was pregnant”).  The heartbeat of a fetus can’t be determined until around 10 weeks.

I wish that every politician, upon election, would be forced to take a basic course in human biology before being allowed to run their mouths about human reproduction.  But it won’t matter.  They will believe what they want to believe and claim that scientific evidence is “faked” or “doctored”.

It is so difficult being a medical person in 2012, knowing how the human body works, also being a survivor and reading about our politicians, the people who make the laws that govern the rest of us, stating that a women can’t get pregnant during an act of “legitimate” rape because the female body “knows how to shut that whole thing down”.

Someone who sponsored a bill with this “legitimate rape” bullshit in it is now running for veep.  Are you kidding me?  And for prez his stance (today at least) is abortion only in case of rape or incest.  So what kind of proof do you need to prove it is rape or incest?  A police report?  Many women do not report their attacks for fear of reprisal or because they just want to “forget about it” and do not want to face their attacker in court.  If it is incest, good luck in reporting that one.  What if they live with their attacker and rely on them for room and board?

This subject is making me ill.  Again.