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.