Bit By A Tick - June, 2015

Two years ago,
In June of 2015,
I was bit by a Lyme infected tick.
My plans are to write a book.
It's been in the works since April, 2016.
The point of that book is to help anyone navigating this rocky road of Lyme Disease.
But,
Given all that can be involved with Lyme disease -
Or Post Lyme Disease -
Or Persistent Lyme Disease...
Or something related to other tick born diseases...
Whatever it is,
I can now only get so much done in any given day or week.
I have been working to come to terms with my 'New Normal';
And the book is still a ways out....
So I've come to realize that a blog might be the best way -
At least for now.
Thank you, Jen Winsor, for mentioning it recently.

Part of this blog will reflect the draft
That is in the works
For the book of the same name.
Part of this will include
Many of the journal entries that I made
In two separate health journals
Over the past two years.
I think I will begin chronologically,
More or less.
I think it will be weekly.

Please understand that I am living
Each day and week
On a limited threshold
Of energy and stamina,
And diminished
Overall physical and cognitive ability -
With a head
That usually hurts,
Hyper sensitive
To light and sound,
And something
'Flaring up' every 4-6 weeks:
Most recently
It's been chronic asthma.

Please understand that,
Given the full time job,
Part time job,
Family responsibilities,
House and home,
And volunteer work
That I am trying to maintain,
It would be rare for me
To respond to comments or feedback.

As a Type A personality,
My New Normal
Still reflects
A lot of energy and capability.
So therein lies
Some of the conundrum:
Seeming just fine much of the time
To other people -
With a smile on my face 
And a 'thumbs up'
When asked
For the thousandth time,
"How are you?".
But do they notice
That my voice is quieter? ...
Cause the sound of my own voice
Is too resonant for my head?
And if I do resort
To my former way of speaking,
I always regret it:
Puts pressure in my head,
And me on the brink
Of an ocular migraine.
Sooo... having to know
That what is in my best interests
Is to set boundaries,
Limit involvement,
And 'just say no':
So that I don't end up bedridden -
As I did last March.
Because most people
Simply don't understand -
Even close friends and family.
:(

As recently as last night,
I said the bedtime prayer
That had developed
When things were at their worst:

God bless this bed

God bless the roof over my head

God bless my friends and my family

God bless the breath that is still in me
(Put a melody to it, too - Kind of like a chant)

========================================================================

DEDICATION 

This is dedicated to my mother, Luane,

And to all Mothers, 
Caregivers, 
Patients of Lyme Disease, 

And others 
Who have faced adversity 

With grace 
And resilience.

PRAYER

For all those 
Suffering from Lyme Disease…

To simplify, 
Rest, 
And breathe.

PREFACE

This is written
With the hope and expectation
That it will help people.
While the experiences of Lyme Disease
Have been different for some people
Who were initially diagnosed and treated the same way that I was,
My struggle has been comparable to those of many others:
A long-term uphill battle – 
Both confusing and debilitating.
If this can help even one person with that battle,
It will have been worthwhile.
In some strange way,
This could be why I contracted Lyme:
To help people with Lyme.
It’s a strange twist of fate.

Over the course of the year
That followed my very timely diagnosis of Lyme Disease,
I had many dozens of office visits –
To a wide range of health practices.
Western,
Eastern,
Alternative,
Homeopathic,
Holistic
And Natural healthcare
All played a role
In the comprehensive treatment and intervention
That eventually lead to my gradual improvement.
The ongoing challenge was that,
A year after diagnosis,
I was still dealing with
Truncated language processing
And cognitive abilities
That were easily halted
With any degree of mental stress -
And what I will call Persistent Lyme.
This presented itself as inflammation
In various forms throughout my body.
While the condition could be labeled as chronic,
In that the symptoms related to my initial Lyme symptoms
Lasted longer than several months,
The term ‘Chronic Lyme’ 
Seems to be more aptly applied
To those who have gone through
An even longer time with “Undiagnosed Lyme” –
Too many years for too many people.

So, 

Until the medical industry catches up with the epidemic that is Lyme Disease; and

Until there are significantly more Lyme Literate health professionals; and

Until there is more significant, objective and relevant Lyme Disease research; and

Until we have more effective treatment
For all that is associated with the aftermath that is related to Lyme Disease,

Patients, such as myself,
Are left to theorize and try to fill in the gaps -
As we try to get better,
And understand what is wrong;
All the while doing this
In a compromised neuro-physiological state of being.  

God help us, every one.

========================================================================

INTRODUCTION

Everybody has a story...
The 20-something or younger
Who sits down next to me on the train,
And says, ‘no’, she’s not from New London
When I ask as we pull away from that  CT station -
And shortly gets off in New Haven –
Unfortunately choosing to share no further information about herself;
The resting 30-something
With a very young baby slumbering on her chest
As I walk by to get a cup of hot soup from the cafe car
(‘Cause I’m STILL SICK);
The very loud financial-something-or-other
Man behind me who wants everyone on the train
To hear his conversation on the phone;
The guy carrying a cute little gal quickly
Down the aisle as she excitedly and repeatedly points out
‘Whadae?’ to many things as they scoot by;
The woman and her very well-behaved young child
Across the aisle,
Who snacks while mom hangs out on her phone
And “shhhhh-shs” the child’s many unanswered questions;
The youngish older fellow in front of me
Who sometimes nudges his nose right to the window
To get a closer look at what’s passing by.

Reflecting on my story,
As I try to rest and sleep on the train -
With the aid of a night-time cold and flu pill,
And the most recent prescription of cough syrup with codeine
For the day long ride from Boston to Washington, DC -
To visit our girl at school,
And see the cherry blossoms:

I think of the 5,000 mile ‘Road and Rail’ trip
I took with the kids the summer before last -
From Massachusetts to New Orleans -
Mostly along the Eastern to South Eastern U.S. coast -
Until we cut across the lower half of Georgia
To the Mississippi coast -
And came back from New Orleans
By way of the train to visit Cousin Cara in Alabama -
Until the train again from Greenville, SC
Back home to Mass.

Glad to have done that trip when we did -
Before Clara graduated from high school
And ventured off to college.
Not such a big deal then,
All that driving.
It’s what I’d been doing for 25 years:
Self-employed as a music therapist -
Itinerant -
Taking my work on the road to all of the contracted sites,
Mostly in Southeastern Massachusetts.

Glad we did that ‘Road and Rail’ trip then -
Cause likely couldn’t do it again.
Can’t do it now.
Not like this.
Not since the end of June, 2015,
When I got Lyme Disease.
And I am one of the ‘lucky’ ones.

I WAS LUCKY

The symptoms came on quickly -
One by one over the course of one week,
And which lasted into a second week.
It took a little bit of time to figure out what was going on.
Some of it seemed like mono,
Which my daughter had had in high school,
And I had also had in the 1970s.
The very first symptom was a headache -
And I typically didn’t get headaches.
(This would be the one, ongoing, persistent symptom through all of it.)
Then there were the chilling, soaking sweats overnight,
Achy all over,
And feeling extremely faint if I stood up.
I had crawled along the tile kitchen floor
In the middle of one night that week,
After I’d gotten up for…. Tea?
Hard to remember now.
One symptom that week,
That didn’t repeat itself in all of the months to follow,
Was sharp pain in my upper right abdomen.
It lasted for hours.
(My gall baldder?)

My body seemed to move through different symptoms quickly,
Which also included general physical fatigue,
Lightheadedness,
Extreme sensitivity to light,
And an ocular migraine.
As I sat at the computer in my office one day,
I started to see geometric shapes wherever I looked on the screen.
And my head still hurt.
I made an appointment to go to the Urgent Care Clinic at our local medical facility,
To rule out… mono?

If I hadn’t set aside this time to go,
I might not have gone,
Since I started to feel just a little better
After feeling so awful …
Until my joints hurt.
My knees and hips noticeably ached.
So I kept the time set aside for the walk-in clinic up the street,
To rule out… Lyme?  

As I sat in the waiting area there,
Dressed in shorts typical for early July,
I noticed a red blotch on my right leg below the knee….
Hmmm….
And then another small red splotch lower on the same shin – closer to the ankle.
I would point these out to the Doctor NP.
After she listened to my symptoms, and checked me over,
She told me that I had a rash all over my torso as well – back and front.

She said that it was “a classic case of Lyme Disease”;
But that the good news was that it was
“…100% curable”.
Good news, right?  

Back at home,
I took pictures of my rash.
It included an oblong, more discolored blotch on the small of my back.

A daily dose of 100 mg. of Doxycycline was prescribed
For two weeks,
Which was fairly standard antibiotic treatment for Lyme;
But which I also came to find out in the months that followed:
Medical staff can be very reluctant to prescribe -
Sometimes for good reason,
And other times not. 

Thankfully I had gone to the clinic that day
In hopes of ruling out Lyme.
Good thing I went,
As I had felt a little bit better since the onset of the first symptoms,
And had considered not going –
So I could rest?
Good thing that I went,
Or I wouldn’t have been there
With the rash
That coincidentally broke out all over my body
That same morning.
I wouldn’t have been prescribed ‘Doxy’,
Which has had its place
In keeping the Lyme bacteria at bay.
And none of the subsequent steps
Would have taken place,
Which included the Lyme diagnosis
Through the correct (second) blood test
Ordered for me by the (second) Infectious Disease doctor I visited.

Knowing what it was
Helped to determine some course of action.
But it is very concerning
That there were several well-respected
And well-educated
In the medical community
Who questioned whether it actually was Lyme.
(SO glad I took pictures of the rash.)
And there are many, many cases of Lyme
That do not have an accompanying rash.
God help these people,
As they try to figure out what’s wrong.
God help them
As they look to the medical profession
To help them get better.  

(until next time....)

In Peace and Good Health,

--Lisa