$150 for a 3 minute conversation: Bitch please.

I lived in Seattle for a while.  A friend recently sent me a map to visually demonstrate why things didn't

work out for me there.  Shit.

My Lyme doctor is in New York.  The closest doctor that would treat me, without a 3 month waiting period, was 12 hours away.  That was fine.  I was sick and found someone to sign on the dotted line so I could get the treatment I decided I needed. Oh yea, thats how this blog is starting.  Pure sass.

Since deciding for myself that the time had come to remove the PICC line - I have been taking an oral antibiotic twice a day for two months.  I was reaching the end of my prescription so I call my doctor's office.  They refused to refill my prescription unless I come into their office.  I calmly informed them that they are 12 hours away and that is quite the expense to have a prescription refill.  She said they would be happy to do a phone consult.  Oh and that phone call, despite only being 3 minutes, will cost me $150.  When I pointed out they still had not sent me my receipt for my last phone consult she informed me there would be no receipt for phone consults.  Aka no chance of insurance reimbursement.

This was the tipping point.  I didn't care she was 12 hours away.  I took my earrings out.

I'm a logical person.  Of course your doctor needs to see you every so often for liability purposes.  If I was taking, um I don't know Vicodin, then sure - let's chat once a month. But real talk.  I am being treated for a chronic disease!  If that shit went away after 28 days I wouldn't be paying your ass out of my dwindling pocket.  More importantly I would be going down the road to any ole doctor who takes insurance.

With that being said.  Today I am officially drug free for the first time in 10 months!  I stopped taking my antibiotics.  Before you reach for your wallet - I have $150.  I do.  But Lyme disease is a continuous cycle leaping and hoping.  There are no tests or protocols for me.  So its up to me to summon the courage take and leap stop a med and hope that I will be okay.  

Off the proverbial ledge I go!  And if any of you dare say my doctor did me a favor to spur on this courage I have two words for you: Bitch please. That courage is all mine.

The Golden Ticket

The bar was loud.  The red wine was heavenly. The company was unbeatable. The 'cards against humanity' were widely inappropriate.  And I felt like me. I have longed for evenings like these, and my lil heart is just so darn grateful to have them back.

Since proclaiming myself: in remission, my entire focus has been on finding a job.  And getting back to drinking red wine.  After all, my tolerance isn't going to build itself back up.  Work.  Due to my switch in priorities I have neglected Lyme for a while.  I needed a break.  Being sick so easily consumes ones life and focus.  And it was fantastic to simply not think about Lyme for a while.

I used to bike to work, to dinner, to bars, to brunch.  I loved biking.  I loved not dealing with traffic.  I loved not paying for parking or the metro.  I love biking to a bar in heels.  Swag.  Then Lyme snatched that joy away from me.  But recently I had a wonderful opportunity to get back on the bike.  A guy named John and his team of bandits are biking across America to raise awareness and morale concerning Lyme.  So I dusted off my helmet.  Layered up and hopped right back onto my bike.

4 minutes later I hopped off my bike.  Got in the back of the bandit's RV as they drove my out of shape ass up a hill.  They edited that part out of the video, yet still a pretty rocken video.

I ended up biking a total of 15 miles!  It was bitterly cold and with each pedal the burning in my throat escalated. They were slow miles.  The guys were able to text and catch up on facebook as I was hoofing to keep up.  But they were magical miles.  I had felt like my body had failed me when I got sick.  But as I biked I was simply grateful for what my body could again accomplish.  No, it wasn't what I could do pre-Lyme, but thats life.  Shit happens and you have to adjust.

There are over 300 different strands of Lyme. Which translates to - just because something works for me it in no way means that that treatment will work for you.  I hated that when I was sick.  Why couldn't someone just tell me what to do to get better?  But we are individuals who need individualized treatment plans.

I have found my Golden Ticket.  My ticket consisted of a whole hosts of items, which can be found on the treatment page. Even though I am much better, I am not 'back'.  My body was put through the ringer and it will take time for me to get back to where I was - aka being able to have some whiskey.  Sometimes being sick can beat you down.  I had plenty of those days.  But I won the war.

One epic battle I won - I negotiated with doctors before I ever saw them or paid them any type of money.  You common folk with normal disease may not be hip to this.  Not all doctors would treat me.  I realized that shit early on and refused to go to a doctor without up front knowing they were going to recognize my disease and not act like this was all in my head.  More commonly known as being an arrogant douche bag.  Technically speaking.  I also negotiated with my Lyme doctor.  I said I would only try different treatments for a maximum of 6 weeks and if there weren't results I wanted a new treatment plan.  I emphasized that unless he agreed to that I would not need his services.

You should see me at a flea market.

The symptoms and the pain could all come back.  Possibly due to stress.  Possibly due to over exertion. But my hope is that since I have that 'Golden Ticket' I won't go through the countless months and agony of not knowing what will make me better.  Even if the ticket needs to be upgraded I now have a strategy that works for me.

It's time to utter that special 9 letter word: Remission

10 months of pain, frustration, not knowing, nausea, isolation, tears, and desperation 

has come to and end.

For someone who overuses ! you may be surprised that the above sentence doesn't have more of them. I don't feel how I thought I would feel in this moment.  I thought I would want balloons and parties.  Maybe those will come.  But rather I feel humbled and grateful.  My health isn't 100% back, but it is back.  A few months ago I never knew if I would get to type that sentence, and that really fucken scared me.

I am humbled because there are a lot of wonderful people out there who are sick.  And as happy as I am to be healthy(er) I wish they were as well.  So with a very grateful heart I raised a very full glass of red wine with a friend.  I am in remission.

The past two months have been a constant oscillation between 'I'm better!' and 'Will I get sick again?'  I am done with that now.  I trust myself.  Yes, I may get sick again.  But living a life of fear is not a life I want to live.  I now know what medications and what lifestyle work for my recovery.  I found my golden ticket.  Which is an ironic metaphor since I am not supposed to eat sugar.  That is correct.  For the rest of my days I have to limit sugar, gluten, caffeine, and alcohol.

No, I don't want to have a PICC line put back as it was painful and gross.  But, the worst...absolute worst part of this disease is the 'not knowing'.  Not knowing if or when you will get better.  Doctors not knowing or being completely unwilling to help you.  The not knowing leads to isolation.  No one knows what will happen and it is solely up to you to figure it all out.

I am still taking oral antibiotics and will continue to for the foreseeable future.  I am not 'cured'.  Nor is anyone with Lyme disease until the government starts funding it properly. Details of how we will change that coming soon!  But for today: Thank you.  Thanks for the cards.  Thanks for the emails.  Thanks for the calls.  Those of you who did those things may never know what it meant to me.  But you best believe that I am going to try!

Crushing hurdles and hearts.

A few more yoga classes and those legs are going to once again be as high as the handle bars!

In junior high I tried a lot of sports to see which one stuck.  The genius who was our track and field coach put me in hurdles.  Yes, my legs make up the majority of my body, but as the man who mugged me knows all too well - I am not a runner.  Although, I never won, came in second, third, or even fourth at hurdles in junior high - I just kicked ass and won a major hurdle. I have made it two weeks post PICC line with out getting sick!

Not to brag, but I am about to brag.  I love riding my bike.  Saving the world and all.  And with that pesky PICC not dangling from my chest it was time to unleash the beast.  Don't be fooled by the picture I always wear a helmet.  But when your earthly possessions are in boxes in a barn finding said helmet takes some work.

To brag more, I started doing pilates, yoga, and power walking.  Only judge that last one after you try to keep up with my walking skills.  Oh and remember that bull shit that I shouldn't drink red wine?  Brag.  I drink now.  Bam.  And you know what else I do?  I go to weddings, put on a red silk dress, high heels, and dance like I actually have rhythm with amazing friends!

Last but not least I have fallen in love.  Mike Nugent my health, happiness, and love are all yours.  Call me.  WHO DEY!!!!! (for all of you that are lost - this is a sports reference)

Time for the next hurdle.  Job searching.  If you would like to help in this process Mike and I would be grateful.  After all, being the most amazing kicker ever won't last forever.

How will you know you are okay?

This whole non-sense of having a disease with no answers doesn't work for me.  Since I am (fingers crossed) feeling better and in desperate need of projects I decided to problem solve.  Using none other than my critical thinking skills.  Bam.

Stage 1: Completed! I didn't immediately get sick after stopping the IV.  In fact I feel amazing, full of energy, wisdom, and wit.  This is a good indicator.

Stage 2: October 20th is 2 weeks post IV removal.  A lot of Lyme patients will crash around 2 weeks post PICC removal.  This will be a big milestone in my lil head.  As in 75% positive I can go full steam ahead.

Stage 3: November 3rd is 1 month post IV removal.  Lyme has a 4 week lifecycle.  If after a month of no IV I am still going strong, well than watch out world, Sadie is back!  

None of this is via a doctor.  But real talk - none of this has been via a doctor.  I knew I needed an IV and found a doctor to put a prescription in.  Fact.

People often ask me how I am feeling.  Despite being a social worker at heart I do know how to be objective about my feelings.  What better tool than Excel to help me chart this for you.

Daily Life Task (DLT)	Able to complete
Shower	100%
Clean	100%
Cook	100%
Exercise	100%
Drive	100%
Shop (thrifting is grueling)	100%
Work Full-time	25%
Work a 2nd job	25%
Happy Hour 2-4 nights a week	50%
Go out dancing	25%
Grocery Shop	100%
Run errands	100%
Date	25%
Travel	25%
Volunteer	100%
Ability to kick ass	71.67%

As the saying goes, 'Where there is will there is a way'.  I strongly and deeply desire to have a job, dance, and travel.  My will is a force to be reckoned with so it at least equals 25%!  

Surprises!

Yesterday the Bengals (and the rain) CRUSHED the Patriots!  Who's defeated now?!  On top of that my mom bought me a pair of shoes!  My love and happiness is that simple.  So much so that I really don't even care that tomorrow I have to have 'surprise surgery.'  As in surgery that is earlier than expected to have this PICC line removed!

I love surprises.  Especially surprises that involve balloons. And since there are balloons specifically made for surgery I can't even be upset.  In 24 hours I will head to the hospital and have this eye sore of a line removed from my chest!  All of you judging me for the amount of ! can just settle down.  Listen, you go 2 months with out being able to take a proper shower then talk to me.  Better yet, be a life long Bengals fan.

This past week I had a 'phone visit' with my Lyme doctor.  I didn't write anything about the call mainly due to the fact that my mother is embarrassed that I talk and write like a sailor.  Suffice it to say that the call, which cost me $175 for 15 minutes, ended in the doctor telling me 'to trust my gut'.  (Insert sailor speak). You probably didn't go through all of the swear words I used yet.  Try harder.  Google if you have to.  You can do it.  There you go.

My doctor telling me to stay on IV antibiotics as long as I can afford it is not going to work for me.  I need reasons.  I need science.  If you have cancer you go in for a PET scan to determine if the chemo is working.  There is no such test for Lyme. Because of this many Lyme patients and doctors say stay on the IV antibiotics for a long time.  Deciding when to go off the IV is a guessing game.  There are no studies documenting efficacy past 28 days.  Not because it isn't effective, but rather because the studies haven't been funded.

I'm a gambler.  Some might say that some of the places I have traveled to, been evacuated from, live or worked in aren't the safest.  Some may say that.  But my gut and more importantly my brain say to pull the PICC line and transition to oral antibiotics.  Let me outline for you why:

1. I have gone from being 20% to 80% and have maintained that 80% for 6 weeks.  This is important because the Lyme life cycle is 4 weeks.  Meaning that if there was a significant amount of Lyme left over I would have had a 'crash' at some point on the IV.  But I didn't

2. The only way to know if I am better is to stop the IV.  If the Bengals beating the Patriots doesn't inspire you to throw a hail mary I don't know what will.

3. There is a possibility that I can crash after stopping.  PICC lines are a risk of infection, and judging by how many times I have had surgery and been in the ER the past 2 months I think I fall in that category.  A Port is a safer device to have inserted for long term treatment.

4. There are no documented ramifications from stopping IV antibiotics and going back on them.  If I crash on the oral antibiotics then I will have a Port inserted and go back on the IV antibiotics.

5. Sometimes the benefits out weigh the consequences, ie. the last 2 months.  Then sometimes the consequences out weigh the benefits, ie. starting tomorrow.

Alternatively, I could throw a bitch-fitch and complain that I didn't get my way and shutdown.  But personally I like to be an adult, put my big girl pants on, and get shit done.

How do you learn to re-trust your brain?

I took a deep breath, folded my sweaty palms, and sat in silence as she read.  It had been a few years since I had written a paper and I was feeling very self-conscience.  She looked across the desk and told me to stop being ridiculous.  She told me what I deep down hoped for and knew.  I was a good writer.

A normal person would have been okay with that.  I on the other hand, waited in front of the Dean's office to ask him what he thought about my paper.  He was put off because he had already graded it and given me a 100%.  Listen, I have graded papers.  I know sometimes it is late at night, you had a few cocktails, and you just want grading to be over.  On the other hand it makes a great reason to end a date early.  They think you are the most dedicated teacher and you get to catch the end of Parenthood.

So the Dean.  He told me I was a great writer.

You may be wondering if I am so cocky that I write blogs about others saying how great I am.  I am not.  Rather, for you to understand what I am about to say you must understand how I operated pre-Lyme.  Normal non-Lyme Sadie needed a bit of affirmation for a new undertaking.  I am all about trying new things and projects.  But I want someone to tell me if I am on the right track for what they are looking for.  Lack of this only breeds inefficiency.  And since I'm not a Republican Representative I prefer not to be inefficient and waste time and money.

For the past 9 months my brain has been shaky.  Slurred speech, which we all wish was from a lil too much red wine.  More specifically that Fifty Shades of Grey wine.  Trouble recalling information and focusing on a conversation.  The 'brain fog', as it is termed in the Lyme community, is this constant haze making it difficult to focus or understand.

Now that I am feeling better I have a very foreign task: how do I learn to trust my brain, again?  For so many months I wasn't sure of anything.  Now I need to get back to being sure.  Its time for me to take the leap that I am getting better, and stop being afraid that all the Lyme will come back.  Because here is the thing: all the Lyme just may come back. In 8 days I will have my Hickman removed.  I will then go on oral antibiotics.  Most importantly I will be able to take a shower and wash my own hair.

People always say, 'Live for today.'  Great.  But my name is Sadie and I am a planner.  I am a worker bee.  My version of living for today is to have a job I love.  My version of living for today is riding my bike.  My version of living for today is being in a city.  My version of living for today is spending time with friends I love.  For me to live for today means looking for a job again, making moves, spreading my slightly bent wings, and trying to fly.  Maybe I will crash.  Maybe I will have an awful reaction to stopping the IV.  But maybe I won't.  And as my girl Katniss knows all too well.  Sometimes you leap and hope that the saying is true: May the odds be ever in your favor!

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!

Surgery #2: Lyme disease being your own doctor

Double IVing it in the ER

These below picture isn't for the faint of heart.  So I have been told.

Do people with other diseases feel as if they are their own doctor?  Making all pertinent medical decisions on their own.  You solicit opinions and research.  But at the end of the day you are the one making the call.  You are the one watching symptoms and patterns.  You look around for doctors that will do what you want them to do.  In the past 48 hours I have sent myself to the ER, pulled out a PICC, ordered a new PICC, and changed PICC locations.

After a stressful 3 hours of misinformation, what I like to refer to at lies at this point, I was told to come to the hospital in an hour for surgery.  So I did what anyone with 2 free arms would do.  Walked down the street and picked up my niece and nephew.  My niece of course had none of it.  Yesterday she cried when I wouldn't pick her up.  Today she demanded to be put down.  Point, Universe.

Van Morrison and I arrived at the hospital to a warm reception.  Lets just say all of the nurses remembered me and my frugal ways.  Upon my arrival they told me the doctor wanted to do a Tunnel PICC Line.  I asked for pros and cons.  What it came down to was a red silk dress.  I can now wear it to a wedding since my arm will be sans lines.

They did say the risk of infection was lower.  However, they said it in a way that not even a child would believe.  The doctor, who talked to me all of 1 minute, said this would save the veins in my arm for later in life.  In that same minute he also asked me if I wanted anesthesia.  I asked about the procedure and he said he would be able to do it sans anesthesia.  Damn challenges mixed with frugality - my one true kryptonite.

An hour later of feeling as if someone was stabbing my neck.  I am now left with this.  But I no longer have lines coming out of my arm.  And now I can give myself my own meds in a pinch.  Independence, what?

The preliminary blood cultures came back showing no growth.  However, if I never wanted to date again I would post a picture of my exposed PICC site.  Granted I'm not a doctor, not that a doctor has spent time looking at the site, but I'm gonna say that it shouldn't look as it does.

I hate being my own doctor.  I really wish I had a local doctor to call who could spend more than a minute talking to me about surgery.  Good thing I think so highly of myself.  I'll add this to my resume: CEO, Healy Lyme Disease Prevention.

Take a deep breath and hold it.

The nurse stretched my arm out on a table.  Told me to take a deep breath and hold it.  I jerked my face away a locked my eyes shut.  He slowly pulled the PICC line out of my arm.  No meds.  Now warning.  No explanation.  My PICC line was gone.  The one thing that has shown any signs of improving this disease was gone.

My mom spent all day Sunday in the ER with me.  It was a horrible experience.  Improper procedure. A complete lack of communication among hospital staff.  It seemed as if no one there knew what they should be doing.

I noticed pain in my PICC Thursday.  I kept a close eye on it.  By Saturday the redness began to look yellow.  I was advised to change the dressing again.  There was a pocket of grossness.  If in 12 hours the site was gross again then it was time for the ER.  The ER is simply a hot bed for infection so I was hesitant to go.  But that was my only option.

My health is constantly being compromised because I contracted a disease that medical professionals are legally allowed to shun me for.  

I wouldn't go to the ER if I had a doctor that would see me.  Especially since the ER doctor spent all of 30 seconds looking at my arm and never asked me a single question.  The only doctor that will see me is 11 hours away.  The CDC acknowledged Lyme is more prevalent.  However, the CDC hasn't made it safe for or mandate that doctors to treat me.  So I am left waiting in the ER for 5 hours.  To have a nurse who openly acknowledges he has never removed a PICC line, pull my line out with no supervision.

If only you knew how many times I looked at my mom and said, 'If I die please destroy this place'.

I now feel like I am racing against time.  The ER said preliminary results would be in this morning.  Radiology says they won't.  The ER left a temporary IV in my  arm with no removal plan.  Some people just want to get married.  Some people just want a family.  Some people just want a good job.  All I want is a PICC line.  To a point of tears.  I desperately need a way to keep getting the only medicine that provides hope I can be 'me' again.