Top 10 reasons Lyme is just like being a princess

#1. I go to a salon more often than Princess Kate.

MKA bow down.

You try washing your hair when no part of your chest can get wet.  No, seriously.  Try it.  If you figure out a way, sans bath tub, please tell me how.

#2. I get a mani pedi for medical purposes.
Circle back to those pics of my toes turning black.  Sexy.

#3. It takes me 5 hours to get ready.
High maintenance ain't got shit on me.  Real talk.  Some days by the time I take a bucket shower, go to the salon, do my stretches, and put clothes on it is time for my afternoon meds.

#4. I have weekly massages
The Lymph system is real.  With out my weekly massages I would not have improved to the level I have.  It is probably at this point that many of you are thinking Lyme Disease may be bank: no working, getting pampered, and all those fun drugs.  And for many of you with zero ambition, drive, or purpose it would be ideal.  Those of you with self-respect and the desire to contribute to the world - just get a massage.  Not a disease.

#5. I can be bitchy and no one questions me
Off with his head!  Fun Lyme symptoms are night sweats and nightmares with a twist of anxiety.  You know that feeling when you can't shut your mind off?  That.  My magical sleeping/anti-anxiety pill is no more.  Dr. Sadie decided I should ween myself off it.  With only 3 more days of the weening process to go I had that fantastic surgery.  Bummer of a decision.

#6. I basically have servants
I didn't do laundry, clean, or cook from April till September.  Before you rachet people think I have been wearing the same outfits day in and day out.  I have a loving mother who makes sure I am presentable.

#7. People send me extravagant gifts
The Magical Kitty Amulet (MKA) is one of the most valued pieces of jewelry of all times.  It is exotic, bold, colorful, and has magical powers.  I have fought, stolen, bribed, and framed others to be able to have this in possession.  To no avail.  But now in my time of greatest need it has come to me.  For those of you who work at boring jobs with un-cool co-workers, the MKA provided immunity from the notice board and the highest honor of the office.

#8. I spend my days gossipping and sending correspondence
Those walks to the post office is one horse drawn carriage short of pure princess behavior

#9.  I can feel a pea under 30 mattresses
Princess and a pea?  A little bit of a thing called Tegaderm and my skin will break out with the fury of teeny boppers trying to get a touch of the Biebs.

#10. The Surviving Whole Foods article describes me
Not just a little bit.  All of it.  No gluten.  No alcohol.  No sugar.  Only organic, grass fed, regularly petted and read stories to animals.  I am that white woman. (hangs head in shame)

18 more days of the IV folks!  Well that is the hope.  My doctor in NYC won't take it out.  My doctor in Ohio doesn't have room in her schedule to take it out for a month.  The hospital will take it out.  My options are to pay $700 for another order of meds or go back to the hospital that botched the surgery.  Decisions, decisions.

I now fully understand why Lyme patients so often take their lines out themselves.  Also, I know I am not at my 'peak' these days, bucket showers and all.  But this many doctors refusing to touch me is starting to make me feel like I am at a 7th grade dance when a slow song comes on.

A defected line and attitude

Some people have 1 in a million luck and win the lottery.  Others get struck by lightening.  I see no point in buying a lottery ticket.  I do see reason to stay inside during a storm.

The surgeon placed a defective PICC line in my chest 3 weeks ago.  It had a hole in it.  The hole wasn't in the part of the line that was exposed.  It was way in there.  Under skin.  If you buy a lottery ticket I would refrain from being around me for a week - just in case.

Most of us like to find someone or something to blame.  In large part because we want a reason.  We want a reason for physical, emotional, mental pain that has befallen us.  Desiring a reason is natural and innate to human nature.

I tend to fluidly move in and out of this.  This week I have been in the blame game.  I don't believe the surgeon maliciously cut into my chest twice to inflict pain on me.  Quite the contrary.  He carelessly operated on me.  Without thought.  I move into the blame game when the pain seems senseless.  I also am here because I was feeling so great.  So great.  Then because of someones error I was in pain.  Not because of my disease.  Not because I did something wrong.  But because a stranger was careless.  That is really difficult for me to accept.  To accept being bed ridden for 3 days because someone else hurt you is tough.

We all believe what we need to.  Those of you who believe everything happens for a reason - bully for you.  However, that is not what gets me through.  And since this is my blog open your mind and get ready.

I don't know how, when, or why I got Lyme.  I don't think I got it for any particular reason.  But I know that the strength, determination, advocacy, self-awareness, smiles, and laughter through this time are because I rose to a bad occasion and decided not to let it define me.  Being sick is really awful.  Captain obvious. I didn't get sick to show those in my life that I am strong and determined.  They already knew that.  And obvi they all already knew how hilarious I am.  If you think my self-esteem needed a boost you should just re-read this paragraph, slowly.

Bummer.  Bad shit happened.  Chin up.  Get out of bed.  Write a card to a friend.  Walk to the post office.  Think of others.  And better get to it.  Looks like a storm is coming.

I heart DC

Yesterday a lot of bad shit happened.  

Yesterday my piece of the bad shit pie happened at the hospital.  The surgeon came in to the room with absolutely no idea what my situation was.  At this point my head is behind a curtain and I am barely able to breath let alone see a damn thing.

The surgeon patted himself on the back as said - 'I'm sure its just a clot.'  When no one spoke up to correct his ass so I decided this was going to be a participatory surgery.  I told him that I received a Cathflow in the ER the night before and it didn't solve the problem.  He then did the push pull test again and realized he was a dumb ass.

So he puts a wire in my chest as a place holder of sorts.  He then removes my 1st PICC line.  Yes, I got so many lines we have to number them.  

A nurse examines my 1st line while the surgeon begins to place my 2nd line.  PICC lines are cut to fit each individual.  This surgeon decides that despite my 1st line being 22, my 2nd line should be 20.  He yanks out the wire.  Then stitches the line into my chest, and with a great sense of accomplishment tells me I am done.

This is when my chest pains increase.  The nurse does the push pull test and realizes no blood is coming back.  My monitors start making a beeping noise.  The X-ray is turned on and all I can see is a wire moving in my chest as if it was going to electrocute someone.  The surgeon called this a 'dancing line.'  Well fuck you and your lack of rhythm buddy.

The stitches were cut.  The wire was placed back in my chest.  The 3rd PICC line was placed.  It was stitched in to a new spot on my chest.  Guess how long the 3rd line was?  22.  Dip shit.

When the curtain was removed from the front of my face I immediately saw red.  PICC lines have a loomen at the end.  For 6 weeks I have had a single loomen.  That is what my doctor ordered and that is all I need.  This surgeon put a double loomen into my chest.  As I calmly inquired about this (as if). He said, 'Well we were out of single loomens'.

Hey bitch, fuck you.

At no point did they ask me if that was okay.  At no point did they call my doctor.  At no point did they stop to think that I am paying for all of my meds out of pocket.  Another loomen means that I need double of everything.  Its not like running to Kroger and picking up some extra advil.  So I am upset.  Sorry for the use of the f word.  Sorry for the anger.

Yesterday this surgeon created unnecessary pain for me.  The surgeon before him created unnecessary pain for me as well.  A gun man created a ton of unnecessary pain for countless people.

Maybe we can all be a little bit more kind to others today...

Most importantly, thank you Bengals.  The only just thing that happened yesterday was the Steelers sucking it.

Okay....kindness starts now.

I've never flashed this many people during a football game

Having a line in your chest is just like breastfeeding.  You are constantly whipping a boob out.  Yet it happens in such a way that no one wants to see it.

Since my line was moved to my chest I can do all of my meds myself.  Yesterday I put the saline in, and the blood began to come out.  I calmly began calling for my parents.  They were of course attempting to move a freezer from the barn.  So I walk outside with my chest exposed, saline attached, and blood pouring out of my bandage.

After a fabulous friend helped us trouble shoot via the phone we determined this was a bigger problem.  We went to the ER which was a much better experience this go around.  Mainly because if I can lie there and watch football I am much happier.  Denver may have saved a few lives because this was a painful evening.

Each nurse, doctor, surgeon, resident felt compelled to do a push pull test.  In which they push saline then pull back on the line and draw blood.  More commonly known as the fuck you test.  I have a hub stitched into my chest.  Each time they did this they pulled the hub out of my skin and pushed it back in.  To a point that my vein began visually popping out of my chest.

They didn't take the line out in the ER.  Instead they put an IV in my arm.  I go back to surgery today for a really fun time.  Apparently they will use a wire to 'explore' and 'trouble shoot'.  I have a feeling this is a sequel to the push pull test.

Still feeling amazing, productive, and most importantly like myself.

There are some things in life that happen premature, and it's a major bummer.

That's what she said.

Apparently, I got sick 9 days too early.  Looking back I can totally see how all of this is my fault.  Why didn't I just stay healthy for 9 more days.  How hard is that?  How lazy can someone be?

In order to qualify for long term disability (the private one, not the government handout) I had to be healthy for a full 6 months after initially testing positive for Lyme.  I was only able to be healthy for 5 months and 21 days; therefore, USAble Life was legally allow to deny my claim.  Pre-existing condition.

The hilarity of all this lies directly in the arbitrary nature of the 'facts'.  For example the date I 'became sick' is simply the date the lab processed the initial Lyme test.  Not the week before when I was lying on my bathroom floor and lost feeling in my face.  Of course I put a towel down first.  No matter how sick I have been the only time I laid directly on a bathroom floor was when I passed out and hit my head.  I do not lay on bathroom floors.  They are up there with belly buttons and rubber bands.  Vomit.

The date 'I got sick again' was the date that my doctor first saw me.  Not when I began giving myself shots of antibiotics into my ass with a 3 inch needle over 2 minutes.  I once ran a 25k.  That is 15.5 miles.  If you ever say 15 miles, I will correct you.  That last half mile mattered.  No one will take that away from me.

Not to pass the blame.  I know how my loyal republican readers hate when people don't take personal responsibility....but had my doctor been on vacation and I saw him 9 days later I would be cashing a check.  And I would spend that money on medical supplies from local Ohio business.  Aren't we in a recession?  Isn't that what people are supposed to do?  It's as if I am not being able to help America grow.

What's the moral of the story?  If you get a horrible disease be sure to be healthy for 6 months and 9 days before ever going back to the doctor.  See what I did there?  I added in 9 days.  Safety.

I got great news. Then the car broke down.

Real talk - I blog because I have been sick and had zero life.  Meaning my lack of blogging has been a
direct result of my shameless gallivanting and flaunting of my newly renewed health.  You healthy people may be wondering how one flaunts their health?  They walk 17 minutes instead of the mandated 15.  They go on trips to visit their amazing family and friends.  They go out to dinner.  They even go to bars.  They wear high heels.  They stay up past 10 pm.  They flirt at parking meters. They have intelligent conversations.  They laugh so much it hurts.  Hurts so good.

I had my big 1 month check up post IV with my Lyme doc.  He basically told me that he hasn't seen anyone ever improve so much and so quickly.  I was paraphrasing there. But duh, I am amazing.  I glanced at the doctor's degrees hanging on the wall and wondered how he obtained them all.  To me he seemed a bit slow.

I am healthy!  That shit is relative and all that BUT as long as I maintain/improve for the next 26 days this IV comes out!  Then I will be on oral antibiotics for 2 months.  I asked the doctor what the balance of pushing myself and doing too much to the detriment of my health was.  He laughed.  I laughed.  It was a special moment of pretending like I was going to balance.

Since we don't have diagnostic testing for Lyme disease there is no 'test' to tell if I am better.  It is based solely on my symptoms, or lack there of.  I went from 40 symptoms down to 5.  Huge.  There is no designated treatment protocol to know how long to stay on the IV.  There is no process to know when I should stop the oral antibiotics.  However, my fabulousness is more advanced than science and I know I am better.

Swag and I walked hand in hand out of that office.  Then the car broke down.  I ain't even mad at ya.  The universe had to keep things in check.  Plus who can be mad when there is a TJ Maxx across the street? The car got new brakes.  I got a new jacket.  Then a semi overturned on the highway.  Took me 4 hours to go 40 miles.  I sat in the car smiling and laughing.  By my accounts that just means I really must be getting healthy.  

I'm elated.  I love celebrating small victories.  This right here is one of those.  But I talk about my amazingness with a bit of tongue and cheek.  My journey with Lyme has been frustrating and difficult, but a lot of my struggle pales in comparison to people who have been sick for years.  I wish our country would acknowledge the pain and suffering Lyme causes.  Invest funds in a diagnostic test.  Invest in research.  Invest in a cure.  Oh because guess what?  We used to have a Lyme vaccine for humans.  Oh and we still have a vaccine for dogs?  Right....

I would write more but I would rather go do some squats, read a book, and run errands.  Because I can!