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.



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.

Chronic Illness in America

So I’m not sure what its like in other countries.  Or what it has been like here in the past.  But this is a theme I might visit on as this continues with me.

Yes, I am fortunate to have family that helps me.  Way more than they should.  But the fact is that if I didn’t have them I would be screwed.  Seriously screwed.  My parents covered our rent for the past two months.  They have been covering groceries now and then.  They paid for my daughter’s school needs (clothes, supplies etc).  My dad paid two months of my car payments.  And they have paid for one month of my medication.

Prior to this illness, I was the “breadwinner”.  I am a nurse with close to ten years experience.  When healthy, I make decent money.  Enough money to support us in a three bedroom apartment in a nice suburb in Texas, to have one car payment, to put food on the table, to have internet access and satellite.

We got married in June.  We paid for the entire wedding ourselves.  It was not a lavish affair, and when it was planned, I wasn’t sick.

I required two weeks off leading up to the wedding for more tests to determine exactly what I had going on with me.  I returned to work for three weeks and my condition worsened.  I would like to say my workplace was supportive of me pursuing the best care by giving me time off and being sympathetic.  But that wasn’t the case.  My mother in law passed away mid-July and the day before I was to start my bereavement leave, my former supervisor sat me down and told me that I was too sick too much of the time and that she fully intended to make me account for my frequent absences when I returned.  I pointed out the dates she was concerned about and how the correlated to a specific medical event and how it now related with my current diagnosis.  She said she didn’t care.  And this is supposedly an educated nurse in the field of compassion.

While I was assisting my husband and his family up north, my condition further deteriorated.  I don’t know if it was the environment up there, the cigarette smoke (my father in law is a smoker) or the stress, but I returned early so that I could see my docs in hope of starting treatment (the dreaded methotrexate).

When I came back and they saw me, it was determined that I could not return to work until the methotrexate was started and the inflammation was halted.  So essentially I have not worked since mid-July.  I have not had a paycheck since the end of July.

I have paid into a short term disability account which I have not received one payment from to date.  My physician has kindly filled out all the forms required of them, including my FMLA forms (and the FMLA forms in a hurry because I have been threatened with termination if I don’t produce such and such forms by “x” date.  Termination means I no longer have insurance benefits for myself, my daughter and my husband.)  Today I called the short term disability company and was told that my case is “on hold” because my employer has not sent them the proper paperwork.  So I send an email to HR at my employer, sweetly asking them to send said paperwork, today if possible (I figure if they can do it so can I) and have yet to receive a reply.

This is my life.  We barely made rent this month.  I was able to cash in my FSA funds from my many many many co pays (that was another adventure all its own) and that was where I got the rent money.  My parents, again, have assisted us with some groceries.  They started shopping in bulk and are sharing whatever they get with us.

I may lose my job for good next week as my FMLA runs out.  I see the rheumatologist for a regular monthly check up next week.  If I am unable to return 100% to my previous duties, they can terminate my employment.  I have been told that they will not “create” a new position for me, one that could use my talents that I still retain.  I have to come back 100%.

I’m not sure if I ever will be 100% as long as I continue to take methotrexate.  I don’t think that anyone can be.  It is a poison.  It degrades cells, that is its job.  My cells are out of whack and are attacking its own tissue to such an extent that my body is requiring poison to whip it back into shape.

At this current time, my limits are 20 minutes.  I can do sustained activity for 20 minutes.  That usually breaks down to cleaning (dishes, laundry, a shower etc), driving, typing.  Walking, make that 5 min.  After said activity, I need to rest.  Sometimes I completely “conk out” and sleep for one or two hours.  My limit for doing activity in a day is usually 3-4 of these little segments of activity before I can’t do anymore.  And depending on the activity, I may feel worse the next day.

This in no way reflects my current job description.  Prior to becoming ill, I was responsible for 12-14 terminally ill patients in a rural part of Texas.  My radius spanned in some places to 50 miles between patients.  I was driving 100+ miles per day.  Because I was driving so much, I wasn’t able to get my charting in at the bedside, so as a consequence, I was finishing my charting at home.  I could be responsible for helping a patient reposition in bed, drawing blood, starting an IV.  I could also be exposed to a number of diseases, viruses and unsanitary or dangerous living conditions.

I am currently looking for any type of work I can do from home.  I used to do telephonic nursing from a call center when my daughter was an infant.  I did health coaching type work, calling patients who were just out of the hospital or patients that fit a specific criteria and discussed ways to remain healthy.  I can still use my brain, my knowledge and my experience to help people.

I still require many doctor appointments.  And I still have vertigo, nausea, pain and days where I just sleep.  And I look like hell.

I am improving.  I have done more this week than I have been able to since starting methotrexate.  But it is a slow improvement.  Too slow for my employer.  Too slow for these bills to get paid.

But it is improvement.  And that is positive.