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!