It’s a full time job…


And no, not one that actually pays me.  I’m talking about trying to get my medical issues paid for even when I have insurance.

My husband has United Healthcare.  And I am thankful to finally have insurance, but the hoops I have to jump through to get anything paid for are absolute insanity.

He has an HRA, which I am slowly figuring out.  They basically put money aside from his company (not just the FSA, I’ll get to that in a second) to pay the deductible.  Half of the deductible.  No copays until the deductible is satisfied.  My deductible is $3,600.  But I’m halfway there on February 1st.

But trying to get the HRA to reimburse ME for out of pocket expenses is like pulling teeth.  I submitted one bill in the first week of January.  They said they lost it.  I submitted it again the following week, they said that they couldn’t read my name on it.  They actually told me to take a pen and go over the name and amount on the receipt so that they can see it better.  FML.

So I am trying to resubmit right now, have been for the past week, and it is either their site being down, or something wrong with the settings on my computer, because it won’t upload.  But I can upload things just fine to other sites, including ADP (that’s another headache).

I have even toyed around with the settings on both this computer and my own laptop.  Nothing will upload.  So I will go the fax route.  But they don’t understand that not everyone has a fax machine, and to get to one i.e. Kinkos or a mailbox place, entails a chronically ill person getting out of the house and physically making it to said fax machine. Fuck.

Now ADP.  I hate them.  With a passion.  I have used the brand new FSA card to try and pay for this shit.  And they promptly cut it off after the first transaction.  And they won’t just take a regular receipt.  It needs to be a “detailed” receipt.  But at least their site lets me upload.  It just takes forever to go through their system.  So maybe I’ll get access to the money my husband already has set aside for us to use in the near future.

And its not like I actually need this money or anything.  I just have thousands of dollars sitting around to pay these out of pocket expenses.

So I am patiently waiting for the mailman to get here with my husband’s paycheck so I don’t have to be relying on Sunshine’s cookie money to keep gas in the tank.

That’s another headache too.  My husband works for a multi-billion dollar international company.  He has been working his ass off since he got this job, on night shift no less.  He volunteers for overtime.  Yet he has had not one paycheck that wasn’t completely fucked up.  And it is not just him.  All of his friends have had issues with their pay for MONTHS.

He has been working there since the end of October.  He has submitted his forms for direct deposit FOUR TIMES.  FOUR FUCKING TIMES.  And yet it has not gone through.  He used his PTO to go to Delaware last month.  His first paycheck when he got back did not include his PTO.  That was fun.  Nothing like expecting a paycheck for a thousand dollars and getting one for $400.  There was also the time that they mailed him a paycheck, and then stopped payment on the check for no reason.  Right now, his company owes us like $300 in overdraft fees.

This last paycheck, they shorted not just his overtime, but his shift differential as well.  And the HR people at his company are complete assholes.  I mean the ones at his physical worksite, corporate is fantastic.  But these assholes act like they couldn’t be bothered to actually do their jobs.  They act like them not paying him is none of their concern.  And because they are only there from 8-5, and his shift is 6p-6a, he rarely has the opportunity to see them with his issues.  And no one will talk to me.

And I am still on the job hunt.  But I got some bad health news today, so that might be stalled.

I had a colonoscopy/endoscopy done on Monday. There is “inflammation” in my stomach and intestine, but they don’t know what is causing it.  I have to wait for the pathology report.

My pain has been just awful.  My joints are starting to swell and I can feel the warmth and see some of the redness.  So I saw the rheumatologist yesterday.  She is VERY concerned about the GI stuff.  She told me that just based on feeling my joints, they are inflamed and swollen.  So she got xrays of my hands again and drew 6 tubes of blood to see what is going on.

On the positive side, maybe this will clear up what is actually going on with me.  Maybe the biopsy from my gut can finally tell them if it is sarcoid or not.  Maybe my blood will come back positive for something else other than just an elevated lysozyme level.  Not that I’m hoping for another diagnosis, I just want a CLEAR diagnosis.  Something that says “yes, you have this disease, and this is how to treat it”.

Ugh.  Off to apply for more jobs.  That alone is another full time job.  “No, we won’t accept your resume, you have to list every single employer you have had for the past 10 years, their address, their phone numbers and your supervisors that probably aren’t there anymore”.  And given that people with chronic illness tend to change jobs or have holes in their employment history, this is a fun task.

I’m pretty sure I have lost out on three jobs right now because I answered truthfully when they asked “and why did you leave your last job?”  I said “because of acute illness”.  I specified “acute” because that is different from “chronic” and I already learned a long time ago to keep the fibro under wraps.  So now I’m going to start lying.  “Oh, I didn’t feel like working anymore” and keep this entire fiasco under wraps.  I just feel so wrong about it.  I don’t like concealing the truth, and if someone is going to invest time and money to train me, I don’t want to come to them a month later and say “I need to take some time off because I’m sick again”.

And these aren’t even full time jobs.  I’m specifically looking into PRN jobs.  In the  nursing world, that means “as needed”.  Most of these jobs ask for a set schedule, but you aren’t “forced” to work 12 hour shifts or weekends.  They usually don’t come with  benefits, but I don’t need them.  This was my plan BEFORE the autoimmune diagnosis.  To go PRN once my husband found a job with benefits.  Something flexible so that I can work more when I’m healthy and bow out when I’m not.  It’s not an issue of not wanting to work.  I have been sick long enough to know that I CANNOT work full time, unless it is something so benign and easy that I don’t move much.  Good luck finding that as a nurse.

So if anyone has any ideas on any of this, how to navigate this insurance nightmare, where I can work, give me a clue.  I’m very frustrated right now with this state of affairs, not to mention my living situation.  Sorry for the rant.  Thank you for reading.


Anyone need a nurse?

Let the job hunt begin.

I recently resigned my position as a RN case manager for a wonderful hospice company here in Austin.  It literally broke my heart to resign.  I truly loved my job, the people, the support offered.  I miss my patients.  But, physically, I cannot perform to their expectations.  I cannot drive 100+ miles per day and handle a caseload of 14+ patients in a rural/economically depressed area.

So I am now looking for the perfect job (if it exists) that has enough flexibility to allow me to continue my medical treatment (chemo).

I am being honest with employers.  I have some limitations, mostly physical.  It wouldn’t be fair to apply for a job that I know I can’t perform.

I’m concentrating on work-from-home jobs.  Nurse triage specifically.  I have no experience with insurance, although I’m willing to learn.

I have been a nurse for nearly 10 years, in many many many different areas of expertise.  If anyone has any ideas please let me know.  If anyone has experience executing a job search while chronically ill, I’m interested in your input as well.

I need to generate some sort of income or we will be evicted.  Its that bad.

Thank you!

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.


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.