UPDATE

UPDATE:

January 8, 2020

My birthday is tomorrow. I’ll be 58.

Just got out of the hot tub at friends. 
[Thank you, Pam and James, for the birthday respite :) ]

Seems I should write down what I’m thinking,
What I’ve been thinking.
It's been over a year since my last post here,
And 4 1/2 years since the onset of Lyme Disease

It came up with the waitress at the restaurant I just went to.
She’s petrified of getting Lyme,
(and of hitting a deer).

I was thinking ahead to next year - when I’ll be 59,
(and starting my 60th year - as my father would say) 

I’m planning to travel somewhere. 
(But probably staying within the same time zone,
because of the havoc it could wreak on my body

to switch time zones twice)  

That’s how it came up with the waitress,
because her mom’s birthday is the day after mine, and her mom

is in Brazil right now - celebrating her 61st.

Where would I go?….
And then she wanted to know more about Lyme.  

Where to start? 
It’s all so convoluted. 

All in all, things are pretty good.  

Could certainly be worse.

(Can’t dwell on how they have gotten worse, as a general part of my life. 

Just have to make it better, one day at a time.)

There was a spell from Christmas to New Years
Where the hacking cough from my toes
Seemed like it could go sideways
And leave me bedridden

(Which is not unusual since getting Lyme.  Never know.)

[Yeah, cough up that crap!
Had to use the inhaler - which I, finally, thank god/dess, hadn’t used for

months now. The steroid one works as needed.
My nurse friend says that it’s only for ongoing use. 

OK.  

It works for me - As Needed - Not Ongoing.  

The first time I used it,
I could feel it immediately open up my breathing,
which I’d been struggling with for weeks at the time.

When will the medical industry acknowledge the 'outliers',
And treat people as the individuals that they/we are,
As a standard form of practice? ]

So, all in all, given that I’ve maintained a full time job
That is physically and mentally demanding -

Working overtime regularly for months... 
(Leave when it’s dark now. Get home when it’s dark...
While I love the winter twilight and night skies,
Springtime will be heavenly), 

...It seems that I’ve reached and/or maintained some form of plateau - again.  

I’m one of the ‘lucky ones’?...  

...Very saddened by the death of a friend’s husband recently. 
He had Lyme.
It was too much.

She had Lyme
And now has cancer
Because her immune system was so ravaged by the Lyme. 

But she’s being an advocate for her health.

She already knew about Lions Mane
and Turkey Tail - for cancer
as well as Essaic tea, apricot pits, and juicing (mostly carrots), among other things. 
No chemo or radiation. And her body feels great! 

I hold her, and all those struggling with chronic immune disrupters, in my thoughts and prayers.

Some things continue to continue for me, post-Lyme,  4 ½ years later:

*Still very sensitive to light and sound -
Have adapted, and usually don’t have to wear sunglasses inside anymore
(tho bright sunshine on the white pews of church is too much)...
Try not to drive at night;
Headlights - and even tail/back up lights can be blinding. 

oy.

*Body continues to vibrate
The fascia?
Especially after too much physical and/or mental tasks...

Usually thighs and bottoms of feet - sometimes my face or arms. 
When I’m busy, I don’t notice it;
But once I stop and am quiet and still, it’s there.
An elderly friend recently said, “That’s an interesting idea,”
when I told him about it,
As we sat in the silence of our church sanctuary after a service.

(Hmm... "Idea"?)

Qi Gong continues to help:
A slow, meditative form of moving with stretches, breath, focus and balancing,
At least a few times each month.
This really seems to quiet, center, balance and ground
the vibrational sense of my body.

*One actual physical improvement :
I hardly have to take allergy antihistamines any more!
Linked to the reduced dairy, I think.
(Try to do cleanses twice a year.)
I mean,
I used to have 24 and 4 hour allergy pills
almost every day

for years
decades
(except for February for some reason in recent years -
maybe has to do with less mold towards the end of winter?

And there’s a daily regimen:

*Up around 5 a.m. most days

Have to have had a decent night’s sleep
(Generally 7 hours - usually getting up twice -
Take 2 night time ibuprofen most nights
Sleep by myself
Use a mask and ear plugs
Although I like to start to fall asleep

Listening to the room and the nearby car sounds
And thinking about the best 3 things of the day:

Sometimes it’s the sunrise
Or a hug from a participant at work
Or hanging with the kids.
Sunrise makes the list usually...)

*Still take thyroid as soon as I get up , and wait half an hour before eating

*Epsom salts a few days each month
Directly on my skin
As I stand in the tub after a shower
Mostly on all joints
Or wherever is most bothered at the time
Currently it’s my knees
A shadow of their former selves

[Diagnosed with flippin’ fibromyalgia last year...
morphed from all of the Lyme
And Post-Lyme symptoms]

*Avocado toast most mornings
(With turmeric, spicy sriracha, lime or lemon juice,
fresh ground salt (various) and pepper (various)

*In early morning, I have the first two or three supplements
(Of 7-8 each day -
and will pace the rest of them through the late morning and afternoon or early evening)...

...Includes AC-Q for muscles and joints,
B12, D3,
Astra 8 for lungs,
Cat’s Claw for the brain

And, in recent weeks, introduced Lions Mane, for the brain
made a difference with my twitching eye that

wouldn’t quit several weeks back. 
My daughter gave me a kit to grow my own Lions Mane. We’ll see.

We started it….

*Pack a lunch
The past few days, it’s the roast chicken thighs  and greens with a

bean/corn/cilantro/tomato salad that my daughter made,
With some type of fruit (berries, apple, banana),

A possible Greek yogurt (though don’t have much dairy now),
And a possible granola bar of some type

(Though those are out, when on a cleanse;
Really only have a handful each month
They're another thing that wears on the immune system - processed carbs)

*Don’t walk too fast at my one floor day job
But my former, pre-Lyme self wants to keep up a good pace

(Working for almost a year now as a case manager
With adults who have special needs).

*Also, many days of most weeks
Garlic (natural antibiotic),
Ginger (anti-inflammatory),
Lots of water.  

Tonight’s dinner was a typically healthy one:
baked haddock with stringed sweet potatoes and ratatouille) 

*Occasionally
I have a small bit of pot
When I know I’m not going anywhere.  

A little bit goes a long way with me,
And helps with the damaged de-myelination of my brain cells.

*I just say no.

People still seem to think I can take on… whatever.  

Just ask, right?

So I say no. 

And that I can’t commit right now, 

Cause I don’t know where I’ll be ‘at’ any given week.

It’s enough to have to catch up on weekends
With the chores and the errands, 

So that there’s food for the next week,
And the house isn’t a pit.

* Meditate most days
Even if just for a few minutes.
Time to breathe
And only breathe
Focusing only on the breath.

*Enjoy some time each day
Watching something to wind down for the day
Usually with the kids -

Sometimes with Rob. 
Needing something 'light' more recently.
Otherwise I can feel the adreniline start to take its toll in my body,
if I watch too much suspense or action. 

Lyme seems to love that.

Yeah! Rev me up!
I still got some life in me!
The dormant cells that are likely very much present still
Somewhere in my body
Protected by the biofilm
That they created?
(They're very adaptive those buggers;
And the host
Is then who has to adapt)

And then the fascia vibrates
And light is too much for eyes
And sound too much for my ears and brain
And my head hurts to the touch...
...Bummer how the energy and sound of speaking
can really aggravate my brain

*CBD oil each night before sleep.  

I almost, without fail
Forget this every flippin’ night.  

But then, my brain reminds me
As I start to fall asleep
When it gives me a warning
That the 'exploding' thing is lurking...
...Less of an explosion then
More like an 'aura'
A cascade of electrical activity not unlike a firework,
Colder in sensation
And not as explosive

...Unless I’ve had CBD oil 

Usually just half a dropper of a low dosage. 
Not psychogenic. 

[It’s very disconcerting - having my brain ‘explode’.
It wakes me up. It hurts.  

It feels like it could be the precursor of a stroke.

While I haven't actually had the 'explosions' in months it seems,
These new 'auras for the explosions'(?) are almost nightly
As my brains starts to drift off to sleep
Unless I've had the CBD oil

Lovely.]

*Also 'vocal toning' at bed time
To switch the brain waves from more to less active
(Like an open mouthed hum, low tones
Is an internal massage to the brain/body
With the sound waves absorbed by the body).

*And, as going to sleep each night,
I think of the three best things of the day. :)
It seems to change my thinking pattern
And actually helps me fall to sleep better.

Which, of course, got me thinking:

Are there different ways of thinking?

How does ruminating over upsetting things that happened in the day
Differ from recalling something pleasant? 

What is the biochemical difference between the two?  

Does one have to do with thinking outward, and one have to do with thinking inward?

One certainly helps me to fall asleep better. 

*Need to mention that I still love to get outside,
Despite the risk of tick exposure
And that deer come right up to our back doors. 
They loved the drooping hemlocks recently,
Waited down with snow.
Got a lovely picture of them.
I think they’re cousins
Who first showed up as yearlings with their moms -
And are maybe 3 years old now.

I won’t live in fear of going outside.

Being cooped up inside has its own set of health risks.

*Vacations in NH are sublime
Winter or summer.

And still gardening…
Though I finally resigned
As chair of our community gardens in town,
At the end of this past season. 
Four seasons was a good run…
Creating them from nothing.
Lots of good people involved in doing that.
They’ll keep going I hope.

******************************************************************************************************

Finally got my application in to a Bio Bank
For research done with tissue of infectious diseases. 

It was about 30 pages.
It was daunting.
And I was missing some of the doctor’s office file information

From the time I was the sickest:
(The second diagnosis via blood test after three months sick;
First diagnosis was after two weeks of acute symptoms,
And rash all over my body when I went to the Urgent Care

That day in July, 2015.)

I've now been waiting for the ‘Archives’ office
Of Quest Diagnostics
To send the ‘values’ of my blood test

From September 2015. 
Of course, they haven’t.
I got all verklempt with the woman
Who was following up on my initial request for the BioBank application

Trying to talk through my tears...
She said to send the application along as it was, long story short. 

Maybe something can be learned from brain tissue,
Or fascia
Really from anywhere in my body

Based on what gets fatigued, hurts or vibrates.

And it looks like they are accepting my donation. :)
Now, 1 1/2 weeks later, the donation forms arrived
for the National Disease Research Interchange based in Philadelphia, PA. )

Closing thoughts:

I’ve plateaued in the past.  

  And thought I was fine, or at least, better.  

      And took it for granted.  

            And ate more processed or fast food or refined carbs or dairy or alcohol or sugar 

                    And cycled downhill quickly.  

My immune system is not what it used to be.
Or did Lyme and Persistent Post Lyme just speed up the aging process?
A couple decades?

Recent cover story for AARP
Was about the main health issue these days: 
INFLAMMATION

Oh, yes.

So what is Western medicine going to do about it?  

***********************************************************************************************************

….Peace

And Happy 2020.

Don’t forget to vote.

--Lisa :)