Tuesday, May 23, 2017

Monday, May 15, 2017

Lyme Awareness Day 15

Just in case you don't know... Lyme is a highly disruptive disease. So for here on out this month, you will get 2 facts about me, my Lyme and treatment, and facts about the disease itself. (I can promise because they are scheduled to post 💚 )

Saturday, April 29, 2017

Sharing my story on the stage

Well, I said I'd try to post more regularly, but as those of you who have chronic illness know, promising something and actually not being capable of fulfillment. For those of you who are healthy, please know that we aren't being flakey or rude or bad friends, I promise we want to be there.

If you haven't heard, I co-wrote a play about my life as it declined into (very) neurological Lyme and my best friend who chose to help me fight for my life. The thing is that we are both theatre artists so of course the natural outlet to tell our story is on the stage. As I am sure many of you know, words aren't often enough to truly explain our experience. Show and Tell.

Six years since my diagnosis (dx). And I will get back to that later, maybe tomorrow.

Five years in treatment (tx).

Now, we are in England. I can't even tell you how much the sea-level and sea air helps me. We are here for a few reasons.

  • I like to breathe- I breathe better here than anywhere. No more air hunger is a blessing more than... I don't even know...
  • Our director lives here
  • Our show titled, "How to Walk Through Hell" is debuting at the Brighton Fringe Festival May 22nd- 28th
  • The woman playing me/the patient is also from the area
  • After 3 1/2 years of treatment (I was so so sick) I have been put on a new protocol and I need a place that doesn't have the heat and insane humidity to really try to get to the point where I have fewer flares from treatment.
  • May is Lyme awareness month
  • My creative partner/care giver/best friend is also in the show as the caregiver
I am sure I am forgetting something(s), but I know you'll understand the memory problems. 

The show's Twitter handle is @H2WTH, please take a look. Though its brand new within the hour, so please forgive the lack of tweets. It will be very active in the coming days and weeks. 

Wednesday, February 22, 2017

I am baa-aack :)

Hello again, Friends.

You may have noticed my nearly 3 year absence. I am still alive, obviously. Still treating with my same amazing doctor who is located about an 8 hour drive away. So, let's see... What happened in the last 3 years?
We will start with bullet points, and then hopefully I can update in more detail as I keep fighting.

  • I have been on antibiotics and similar meds since I began treatment. We have to rotate my cocktails so my body will continue to fight and not get too used to the same meds.
  • I no longer have Babesia. No more Mepron! That might be the best thing to report.
  • The Bart is most likely dead. Some of my pain comes from being getting to live to 31. I am learning to differentiate pain from the illness or pain from getting older and having endured sports injuries and the sort from being a kid.
  • I have Persistent Lyme. 
    • This means that I might have other infections too, but mostly that I have some serious work still to do.
  • My best friend and caregiver who also happens to be a talented playwright and actor and I decided that we need to share our experiences.
    • WE WROTE A PLAY!!!!
  • I will be checking in more often and I may transfer this blog to another site. 
I know that this is short for a 3 year catch up, but my hands still aren't the greatest.