While organizing why not add up the cost of your medical treatment

My favorite jobs have been ones where I was able to create a system.  I love to plan, organize, and be creative. Creating a new system allows me to do all three. But the fun doesn't end there!  The beauty of a new system is that you are constantly evaluating and making changes.  You pitch an idea and see if it works.  If it does - great! If it doesn't - make changes.

As the bills, prescriptions  notes, symptom charts began to pile up it was time for a system.  I settled on a giant binder with several tabs.  This blue binder has been my truest companion through this.  Each time I see a new doctor they all have the same questions and want the same information.  As someone whose short term memory has become problematic and inability to focus with out pounding headaches - this task has proven difficult.  Each day I work a bit on the binder.

I now have calendars documenting each day I have been sick and my symptoms on those days.  I have a list of my initial symptoms and my current symptoms.  Countless prescriptions documenting what meds I have been on and the dosage.  My tab of lab results is bursting at the seem.  Each doctor wants to run the exact same tests.  My hope is that they will stop shoving needles into my deflating veins if I can show them the blood work from 2 weeks ago.

Despite this organization keeping up with the medical bills, and making sense of them is overwhelming.  For example: insurance provides a date and code (i.e. doctor visit), but doesn't say which doctor or which services.  Seeing as I have seen 5 doctors more information is necessary.  I called insurance, since they have been so helpful, to ask what a few of the bills were for.  Shockingly they couldn't tell me.  She said she would call me right back.  It is now 2 days later.  

My short-term disability and time of being 'employed' ends tomorrow.  Over the past 2 weeks I have tasked myself with wrapping up that chapter and the bills associated with it.  As I sat on my bed organizing the bills by date I decided to have some fun.  Wild and crazy fun.  I added up my bills.  To date my medical tests and approved doctor visits have cost insurance $20,913.50. Baller. That does not include the cost of Lyme doctor visits, supplements, or prescription co-pay. But those are things I have had to pay out of pocket for so adding them up would be much less fun.  

55 shades of a sugar free diet

When I make a decision, I make it.  No looking back.  Full speed ahead.  On Saturday I decided that Sunday would be the day.  I relished in the anticipation.  Like a giddy school girl I could barely fall asleep.  I sat a little lighter on the couch.  I came down an hour early for dinner.  Then finally it was time.

The pie was placed on the table ever so delicately.  It seemed as if it took an eternity to cut each piece.  Then it was finally my turn.  The perfectly baked slice was in front of me.  I closed my eyes and exhaled.  It was finally time.  I savored each bite.  Meticulously deciding which would be my last bite.  I pressed my fork against the plate to ensure each crumb made it to my mouth.

A heavy sigh and I could no longer sit upright in my chair.  I could feel my belly expanding as if I was with child.  The beast had been awaken.  I needed more.

For 55 days I have lived without sugar, yet known where each piece of chocolate was kept in the house.  Averting my eyes was not an option.  I knew there was a Hershey bar resting in the door of the fridge.  Unopened graham crackers sealed to perfection and in the back of the drawer under potato chips was an almost empty bag of marshmallows.  

Despite my growing need, patience was paramount.  I knew in that moment I wanted, and needed a perfect golden brown mallow in order make this moment everything it could be.  Seconds felt like days and minutes felt like years.  Finally, perfection was reached.  Each bite better than the last as the chocolate melted under the warmth of the marshmallow.  It was time for the last bite.  I closed my eyes, felt the wind on my face, and the angels began to sing.

Today the cycle begins again.

Remembering what I can do when healthy, and accepting what I can do while sick

I am a natural planner, but that was taken to new heights during grad school.  I had mapped out all of my courses to ensure I would be able to graduate a semester early.  So when a professor attempted to jeopardize that plan I was less than pleased.

This professor began her Community Organizing class asking if everyone had completed a certain course.  7 of us raised our hands and said we had not yet completed the course.  She insisted that it was listed as a pre-rec and we must leave the class immediately.  I politely raised my hand and said that there wasn't a pre-rec listed for the course.  She then told us again to leave class.  6 people left class. For those of you math wizards out there you know one person was left.  Me.

As she asked me to leave again I demonstrated a useful tactic we would later discuss, a sit-in.  We were assigned groups with specific community organizing goals.  My group was tasked with writing legislation, getting the bill introduced, and turned into law.  I'm just a bill sitting on Capitol Hill and all of that. The Good Samaritan Overdose Prevention Act is now law in Washington, DC.  Fact.

Then and now I have no tolerance for people who make decisions about my abilities with out knowing me.  This professor knew nothing about my background, yet assumed that with out taking a certain course I would never succeed in her course.  Tell that to my A.

The insurance company never spoke to me, never conducted an exam, never cared to know the pain I am in.   I may not be able to give BCBS everything I gave this professor, but rest assured one day I will be 100%.  But for now I am at 15%, and some fights must be put on hold in order to focus on what must get done.  I have decided that I am proceeding with the PICC line and IV antibiotics.  I will pay out of pocket for the meds because I need to get better, and at the present time this is my only option.

The surgery is scheduled for August 9th.  Since I have not been able to drink or have fun I am really looking forward to the anesthesia!  In the meantime please disregard me as I flash my naked upper arm.  I will let it fly high before it is wrapped up for the foreseeable future.

Even rockstars cry sometimes.

My doctor called to inform me that insurance has denied my treatment.  They stated that my symptoms were too vague.

After spending 45 minutes on and off of hold waiting for BCBS to tell me why they refuse to cover my treatment, I was told this: 'due to privacy policies they can't inform you what the reason for denial is'.  That was it.  This was the moment I lost it.

I walked into the room my mom was in and proceeded to cry.

Yesterday sucked.  Scared I won't get better because it will be too expensive.  Frustrated that despite being so financially responsible all of my life I will be bankrupt in about 3 months.  Literally, I put all of my money from first communion into a saving account.

I really want to be healthy again.  This road block scared the hell out of me that I may not get that.  Seeing my friends advance their careers, fall in love, buy houses, travel is great.  But yesterday that wasn't great.  Yesterday I cried.  Yesterday I felt sorry for myself that my life is on a very painful hold.

Today I got this video of a dear friend in Zimbabwe.  She is a rock star.  Today I will quit feeling sorry for myself.  Today I will think about things other than myself.  Today I will channel my inner rock star and get my shit together.  And be awesome.  Fuck you insurance.  I will get better with or without your help.

Time to go to the mattresses

The past week has been consumed by fighting.  It can be broken into 3 different categories.  First, my short-term disability payments were incorrect.  Second, obtaining paper work for COBRA to ensure I didn't have a lapse in coverage took over a week to obtain.  Third, I was told approval for the PICC line should take a few days - not.  Still no word when or if I will be covered.

Sadie sans Lyme could remember all of these things.  I could keep my questions in order.  I could remember how to advocate for myself to ensure things got done.  But Lyme has fogged up my brain.  What this means is that it is difficult for me to remember things.  Not things from 10 years ago, but rather things from yesterday.  I can remember the names of people I have know for a long time, but people I have met recently since being sick pose problems.  I know who they are, but it takes me a while to recall names, if at all.  

I may not be able to recall names, but I do believe the people at Blue Cross Blue Shield know my name.  Bam.  Particularly the woman handling COBRA.  She may hate me, but squeaky wheel and all that. Further more, bitch please, all you have to do is email me a template with my name and cost of COBRA. I'll hold on the line until it is in my inbox.  Thanks.

The stress of all of this has resulted in some pretty ugly days around here.  Lyme stress manifests itself in several ways.  For me it has been chest pains making it difficult to breathe even while doing nothing.  My joints feel as if I am being tortured for state secrets and Jason Bourne is crushing my knuckles with pliers.  I constantly have ringing in my ears as if a swarm of bees were surrounding my head.  Prisoners unite.

Personally, I don't think people mean to make this process so difficult.  But difficult it is.  I never knew the pain of being sick and having to jump through these hoops.  Now I know those hoops have made me sicker.  So all of you important people out there - get rid of those hoops.  Fix your systems.  Pull yourself up by your boot straps.  Shout out to my Republican readers.  Make life easier for someone who is already going through hell.  Karma (insert your faiths calling to care for the sick) and all of that. 

It's so hard to say goodbye...Until you learn to play the banjo!

I have been racking my brain to figure out just how to say goodbye to my students.  Sure we can Skype and I can say how much I will miss them and how proud I am of their accomplishments.  Lame.  But thanks to the Bachelorette I can now offer a proper goodbye.

You may not know this, probably because you have a life and can go out in public and talk to others, but this season of the Bachelorette is coming to a close.  The participants of this show are constantly writing poetry and singing songs.  Last night as the 'Men told all', it hit me.

I will write a song to say goodbye to my students.  By this point my pain pills were really kicking in and I decided to add in a banjo.  You will be shocked, but I literally just picked up the banjo and played this song.  No practice.  No rehearsal.  Nor have I ever had a singing lesson.  Natural talent.

The age old question: which came first the viagara or the morphine?

My parents were winding down their evening.  There was a loud bang outside, but they figured a neighbors engine dropped.  I know that is always what I think when I hear a loud scary noise.

Our neighbor was banging on my parents door screaming for someone to call 911 and come quick.  By the time my parents got outside the passenger, lets call her Freida, had opened the door and began rolling in the grass screaming for help.

There is a sharp bend in the road 30 ft before my parents house.  The car obviously took the turn too fast.  They drove through the yard, into the ditch, and finally the car bounced up and was stopped by the tree.

Thankfully a nurse was driving a few cars behind the accident.  She stopped and began triage.  The driver wasn't moving and wasn't saying anything.  The nurse attended to the driver and began giving orders for Freida, who at this point had begun pacing in the front yard.  Freida had white powder coming out of her nose.  Yes, we thought coke as well.  But let us all be educated.  Some air bags leave a white powder residue.  Once Freida was laying down my mom asked her where she was having pain.  As she lifted up her tank top it was clear the injuries were more than initially anticipated.  The seatbelt had clearly left a streak of bloody abrasions across her body.


Help arrived to transport them to the hospital.  The police officer on the scene began tearing the car apart.  Since this is the country it was no big deal that my dad and I were also going through the contents of the car.  After all my car is also a Honda Civic so we debated taking the tires off since the driver appeared to have no insurance to cover the damage to my parents yard or tree.  Ah county justice.

There were boxes in the trunk of sanitary pads and soap.  The car had a large amount of trash, freshly purchased KFC that exploded. morphine, and viagara.  Freida casually mentioned that she was recently at the hospital.  So what do you think caused the accident?  The age old question: which came first the viagara or the morphine?

Ain't nobody got time for that

Healthcare.  Insurance.  Headaches.

Remember the doctor who told me Lyme isn't real and I should just get better?  You know, the one with bugs crawling on the floor.  Shockingly all of my test he did came back negative.  I don't have Lupus, MS, or RA.  He left me a message informing me that I have arthritis, despite the blood test saying I don't.

Which is totally understandable.  I am making up that I feel like death.  I secretly just wanted to lose my job, independence, body, friends, and move in with my parents.  It was the best step to further my career goals.

The only positive test result I have had through this entire ordeal has been for Lyme Disease.  Fact.  Yet every main stream doctor I have seen has said I don't have Lyme.  Ain't nobody got time for that.

My next battle is with access to care and insurance.  Despite my doctor saying that I need a PICC line to get better and beat this disease - I may not get it.  First, the agency that my doctor uses for the IV antibiotics has to agree to treat me in Ohio.  Second, my insurance company has to agree to cover the surgery and treatment.  Third, a doctor in Ohio has to agree to oversee my treatment.

Cross your fingers folks!

Life is made up of moments. This is one I will remember.

WOZA MOYA!

In Zimbabwe it is illegal to gather in groups.  It is illegal to speak out against the government.  The women of WOZA demand bread and roses.  They demand to be treated with respect.  They demand clean water.  They demand justice.  These women take to the streets to non-violently demand these items and so much more.  The freedom, love, and pure joy they exude is contagious.

A few minutes after I snapped this picture riot police threw tear gas at the women, released police dogs, and jailed several women.  They weren't even wearing hoodies.  As if you thought I could resist commenting...

Life is made up of moments.  Some we remember.  Some that go by without any passing thought.  Today I had to submit my letter of resignation.  I had 3 months of short-term disability to recover.  I didn't.  In a few weeks I will be un-employed.  My doctor has determined that I am not responding to treatment.  He is recommending a PICC line.  A PICC line is a tube that will go from my arm to my heart so that I can receive antibiotics through an IV daily.

I chose the above picture for several reasons, but one of them is that there wasn't a goodbye.  I had to leave...suddenly one could say.  I am sure my parents would chose many other words.  But there wasn't a goodbye.  This moment in life isn't going to have a goodbye either.  Yes, there are phones, emails, texts, and skype.  Those are great.  But there is sadness in my heart not to be able to give some hugs, maybe shed some tears, make an inappropriate joke about disease, and say goodbye.  

This picture is also one of hope, because much to my parents dismay, I did get to go back and say some hellos and goodbyes.  I have a bit of regret that I didn't travel more places while in Seattle.  But I am happy to say that with the people I left it all on the court.  I gave everything I had in the moment I was in.  Since my soon to be vacant apartment was decorated in the nautical theme it seems that all that is left to say is, BonVoyage!

To hell with it!

Happy Friday folks!  Sometimes when you are battling an asshole of a disease you just have to say, 'to hell with it'!  Ask your wonderful mother to go get you two cheese coneys.  Devour them like an obese child finally released from fat camp.  Leaving you with a beautiful cheesy grin.

Get it?  'Cheesy' grin - 'cheese' coney?  Rest assured Lyme will never take my wit.

Bugs and other things you never want to see in a doctors office

Stretcher in a hospital in Zimbabwe

There is something about a man who wears a bow tie.  Statistically speaking I usually get along with such men.  When my doctor walked in with a pink striped bow tie I was hopeful.

Then he opened his mouth and began talking.

Ladies, can I get an amen that this is the exact moment most men run into trouble?

If you think I am feisty while writing this blog you should have seen me in the doctors office.  At one point my mother laughed out loud seemingly from shock.  The CDC says that once someone has received a 2-3 week round of antibiotics they are cured.  Those few who aren't cured should simply deal with the symptoms which will resolve themselves.  Yea, resolve this CDC.  If only you could see what my hands were doing.

This means that almost all doctors who accept insurance have to abide by these standards in order to be reimbursed by insurance.

Since I am not better, nor do I think the answer is ever just to live in debilitating pain, I am exploring other options.  Today was the Infectious Disease Department at a major university.

The bow tie man began by informing me he doesn't think I have Lyme.  Awesome.  He claims that I most likely had a false positive on my initial Lyme test.  He went on to say he has read a study confirming that long term antibiotics do not work for Lyme disease.  Well homeslice unlucky for you I have the power of critical thinking.  I have read that same study.  Momma didn't raise no fool.  There isn't a 100% accurate test for Lyme.  If you think I had a false positive then there is no guarantee that all the people in the study actually had Lyme.  Further more, the vast majority of people who are treated for Lyme do get better after 3 weeks of antibiotics and do not need further treatment.  The study was flawed from the beginning since there isn't an accurate test to determine if someone has Lyme as well as what stage the disease is in.

He began to speculate what disease I have.  I let him say 2 then I decided it was time to step in.  I must be wicked smart because I was able to guess the next 3 diseases he thinks I have!  Crazy?  Nope, just literate.  Lyme is so often misdiagnosed that I can guess the diseases doctors will tell me I have.

He informed me I should stop all of my meds cold turkey.  I said no.  Crickets.  He asked me to sit on the table so he could examine me.  I then began to examine the bug crawling on the floor.

As my mom and I scurried out of the building attempting not to touch anything or breathe in any air, I was flooded with deja vu.  Ah, the time I was violently ill in Zimbabwe and sent to the hospital.

Lyme is a bitch of a disease.  Then on top of it you have other bitches, also known as doctors*, telling you that you don't have Lyme.  Yet, they always seem to leave out the part that they don't have an accurate test nor does insurance cover the treatment.

*Not all doctors are bitches.  This I know.

Critical Thinking

Yesterday one of my students tipped me off that this blog was sent out to all my students.  Knowing this information I thought I would welcome each of them to the blog!  Miss you like crazy.

I taught a variety of things, but critical thinking was the most important.  As well as educating them on the wonder known as the Bengals.  So today I will share some critical thinking opportunities provided by Ohio!

1. The facts: Over the 4th 11 people were killed in Chicago and 67  were shot.  My father claimed that if Chicago had a conceal and carry law the murder rate would decrease.  Go guns.  Which makes sense since most violence is gang related.  And most people who are in a gang register their guns and obtain a conceal and carry license.

Not.  This claim doesn't take into account economic factors nor the deteriorating school system.  The problem is bigger than guns.  (All of my lovely Republican readers - please leave your rebuttal in the comment section.)

2. My dad loves to wear a Bush Cheney hat.  He makes a big production of putting the hat on if I am in ear shot.  My niece and nephew love to repeat things.  I told them the hat is full of poop and if they see Buba (my dad) wearing the hat they should say 'EWWWW'.  I used their lack of critical thinking skills to manipulate them.  Bam!

My niece and nephew were lucky.  I provided them with true and valid information.  Arm yourselves with critical thinking.  For you may not be as lucky as my niece and nephew.

#sarcasm

When I move far far away I want you to remember this moment

The dinning room table was surrounded.  My younger brothers first off spring was hurling food in every direction.  My older brothers little boy was shrieking like a pre-teen at a Bieber concert.  The stench of a dirty diaper was lingering in the air.

I leaned over to my sister-in-law, "When I move far far away I want you to remember this moment."

Each new medication brings out different symptoms/side effects.  Most notably is that loud noises make me want to off myself.  I love my nieces and nephews - really I do.  But children are loud.  Fact.

Lyme is a funny thing.  And by funny I mean flippen annoying.  I look fine - see picture above.  Don't all bridal showers end with the cops showing up?  Since I look fine if I don't constantly complain about the amount of pain I am in people assume I am better.  But the reality is that constantly telling people how awful I feel and how much pain I am in is a downer.  

Our dear friends son is getting married to a very lovely gal.  The bridal shower was hosted by my mom.  It was lovely.  But the simple act of attending left me in so much pain I was in bed till 6pm the next day.  Which would be par for the course if I could drink.  Bam!

I'm over it.  This week I am meeting with another new doctor.  Next week another doctor.  I may be sick, but I am a trained advocate and its time to raise some hell.

Get bent

My doctor called yesterday.  He calls every two weeks to check on my symptoms.  Here is how the conversation went:

Doc: How have you been eating?
Me: I haven't had any Fing sugar in 31 days, 4 hours, 10 minutes.
Doc: Have you had any alcohol?
Me: Seriously, don't you think if I was drinking I would be nicer to you?

At least that is what I wanted to say..... damn filter ruins all of my fun.


I am not sure if I got a batch of defect needles or if I suddenly have abs of steel, but lately my needles get bent.  As in when sticking the needle into my stomach it bends.  This results in more bruising and pain.  Once again this is where sugar and alcohol would come in handy.

I am going to assume that not working out and laying around all day has given me abs of steel.

6 month reflection

After 3 dates if I don't see boyfriend potential I end things.  By 2 months if I don't see long term potential I end things.  Needless to say I have a significant amount of relationships that are 2 months.

Time matters.  I am a very time oriented person.  I am a driven planner, which means that if something isn't working I change things up.  Try a different approach.

The past week or so I have been knocked off my game.  No walks to the post office.  No cards.  And way too much feeling sorry for myself.  The pain got the best of me.  I curled up and had a pity party.  It has also been a time of receiving.  Someone out there signed me up for a trashy magazine that arrived!  Cards and notes from friends.  A wonderful present of a beautiful scarf and earrings.  And calls and emails.

Thank you.  More than you know you helped me through a tough time.

I have now been sick for 6 months.  I haven't had alcohol for 5 months, sans 2 glasses on my birthday.  I haven't had sugar for a month.  I haven't had gluten for 3 months.  Yet, looking back I would never have sugar again if it meant I could go out dancing.  I would forgo bread if I could ride my bike.  I would give up alcohol to work.  Scratch that.  Let's compromise on no alcohol during the week.  Homeslice needs her red wine.

Some days I handle this disease with grace and class.  Some days I don't.  I guess I'll raise my water bottle to the continued daily trying.  Thanks to those of you who make that trying easier.

Oh that elite main stream media did it again.

It's Lyme season everyone!  Technically May is Lyme Awareness month, and the month of my birth.  Oh irony my truest friend.  The New Yorker and NPR both recently ran stories on Lyme.  I hope that by dropping those two news sources it will help reaffirm that I haven't been totally lost to trashy TV.

My initial take away from these articles was that I feel lucky.  I tested positive for Lyme.  Being in public health I am so used to 'testing positive' being a scary thing.  However, in my case it has made this painful journey a bit easier.  Many people don't test positive initially for the disease for a variety of reasons.  The main reason is that there isn't an accurate and reliable diagnostic test to determine if indeed someone has Lyme disease.  Let alone determine how advanced the disease is.

They state over and over that their isn't any empirical evidence to support long term antibiotic treatment of Lyme Disease.  Well no shit.  To have empirical evidence you would actually have to conduct a study.  No study = no evidence.  Funny how that works.

My favorite part is when the author says, people who continue to feel sick become desperate and seek alternative treatments outside of main stream medicine.

I date.  Not right now obviously.  Hey, nice to meet you I have a disease, am not working, and live with my parents.  But I have dated an array of men in my time.  Desperate was not one of the words uttered in that final conversation.  There have been plenty of words spoken, but not desperate.

Yet, somehow that is the word the medical community wants to characterize me with.  Well, homeslice its time to look in the mirror.  This is a two way street and its time for you to acknowledge your short comings as well.  Maybe, just maybe you should ask yourself what makes so many people seek alternative treatment?  Oh my, could it be?  Could it be that you have no Fing idea how to heal me so I go elsewhere?

Let me break this down.  Say you have worked at a job for 5 years.  Despite your stellar performance your boss continues to deny you raises or promotions.  Now you did your part, you 'Leaned In' and showed initiative.  You worked hard, did everything right, but weren't given what you needed or deserved.  So you decide to seek a new place of employment.    When parting ways with your boss she says that you are desperate.  Not the correct word, right?

Frustration that main stream medicine is unable or dare I say unwilling to help 'cure' what ails you is not the same as desperation.  Seeking out alternative treatments to stop a disease from ravaging your body is called Advocacy my friend.  #SocialWork