I left the old entry open so that it would be easy to access.
But I had to sign in again. oy.
It's tasks like these that are very challenging.
My brain has to take a .... ??? .... and regroup - somehow -
To try and figure out the next step.
So I got there. Or here.
~Totally bummed that I can't drink coffee anymore...
Or even regular tea.
It was one thing to have coffee limited -
In order to avert the ongoing aura of ocular migraines.
But, when I think I can have some tea,
And things seem ok,
It creeps up on me slowly -
Without fail - over the course of a week or two -
As my vision starts to get challenged/strained -
My head, forehead, eyebrows get tender to the touch,
And the pressure builds in my forehead.
My head starts to 'swim'/feel overwhelmed,
And my ears have a soft fuzzy ringing buzz in there.
It's hard to read,
Because I need to close my eyes
And would do best just lying down.
It's a challenge for me to just lie down.
Though I usually like it when I do.
Relaxing.
What a notion.
So..., no tea either :(.
Trying to have green tea and herbals be enough.
Doesn't quite give me the jump start that had been helpful pre-Lyme, tho.
Sitting here at the computer on a Saturday morning,
Ataring at this BRIGHT screen is already a challenge.
We'll see what can get done.
=======================================================================
THE MATTER OF THE WHITE MATTER
I've had two MRIs: Magnetic Resonance Imagings.
They were a year apart.
The first one was in September of 2015 -
The second in October of 2016.
The first was requested because of the unresolved issue with my brain.
I'd been bitten in the small of my back when camping with my kids,
And didn't know it for ...over a week?
As the tick dined on me.
The infection went into my central nervous system.
After a month or so,
My general practitioner's office had advised me to go to the ER,
Because of a concern about potential Lyme Meningitis -
Based on an extreme headache and stiff neck.
I was given the wrong Lyme test at the ER,
Because it didn't test for the antibodies.
By the time I went to a second infectious disease doctor at the end of September,
The antibodies had built up enough to show that it was,
As was initially diagnosed at the Urgent Care Clinic in July,
Lyme Disease.
I was also tested for many other tick born diseases - all found negative.
They were a year apart.
The first one was in September of 2015 -
The second in October of 2016.
The first was requested because of the unresolved issue with my brain.
I'd been bitten in the small of my back when camping with my kids,
And didn't know it for ...over a week?
As the tick dined on me.
The infection went into my central nervous system.
After a month or so,
My general practitioner's office had advised me to go to the ER,
Because of a concern about potential Lyme Meningitis -
Based on an extreme headache and stiff neck.
I was given the wrong Lyme test at the ER,
Because it didn't test for the antibodies.
By the time I went to a second infectious disease doctor at the end of September,
The antibodies had built up enough to show that it was,
As was initially diagnosed at the Urgent Care Clinic in July,
Lyme Disease.
I was also tested for many other tick born diseases - all found negative.
Thank you Dr. LL for making the effort to help people with Lyme Disease (LD).
He's gone now - Don't know where or why.
Didn't give a reason, or an indication of where he was going,
As most moving health professionals will often do.
The award winning documentary, Under Our Skin, might give you some insight as to why.
He's gone now - Don't know where or why.
Didn't give a reason, or an indication of where he was going,
As most moving health professionals will often do.
The award winning documentary, Under Our Skin, might give you some insight as to why.
The first MRI showed white spots all through my brain.
But they're stable. They're not active. That's the upside.
The second MRI showed no further infection -
But all of the white spots are still there.
The downside is that my brain is compromised in some way by all of these white spots.
What do they mean?
The MRIs report early ischemic damage, demyelination, and large perivascualar spaces.
oy.
I'm note sure exactly what all of that is, but I do know some things about the brain....
But they're stable. They're not active. That's the upside.
The second MRI showed no further infection -
But all of the white spots are still there.
The downside is that my brain is compromised in some way by all of these white spots.
What do they mean?
The MRIs report early ischemic damage, demyelination, and large perivascualar spaces.
oy.
I'm note sure exactly what all of that is, but I do know some things about the brain....
...From my studies as a graduate student in speech pathology,
And then continued as part of my music therapy studies,
And then later more studies as part of my masters in health promotion.
I find the brain very interesting.
And then continued as part of my music therapy studies,
And then later more studies as part of my masters in health promotion.
I find the brain very interesting.
But, given my current condition, some of this might be a little off...
NEUROLOGY 101
Brain cells are called neurons.
Neurons have a cell body, a myelinated axon and dendrites.
The neurons communicate through each other via the synapses,
Or spaces, between the dendrites of one neuron and the body of the next neuron.
Many different chemical reactions take place in these synaptic spaces.
The neural communication of the brain's cells determine everything that happens in our bodies.
There are different parts of the brain for speech and language, motor skills, cognition, the limbic system, over all immunology, and basic life functions regulated by the brain stem.
The axons are covered with myelin,
Which help to protect the axon of the brain cell, a
And which therefore help to maintain the neural communication
That passes from dendrites through synapses to the cell body,
Down the axon, to the dendrites, and so on.
Neurons have a cell body, a myelinated axon and dendrites.
The neurons communicate through each other via the synapses,
Or spaces, between the dendrites of one neuron and the body of the next neuron.
Many different chemical reactions take place in these synaptic spaces.
The neural communication of the brain's cells determine everything that happens in our bodies.
There are different parts of the brain for speech and language, motor skills, cognition, the limbic system, over all immunology, and basic life functions regulated by the brain stem.
The axons are covered with myelin,
Which help to protect the axon of the brain cell, a
And which therefore help to maintain the neural communication
That passes from dendrites through synapses to the cell body,
Down the axon, to the dendrites, and so on.
What do the white spots mean?
Are they placque? Dendritic tangles?
Placque and dendritic tangles have been associated with Alzheimers Disease.
The white spots of MRIs have also been associated with Multiple Sclerosis (MS).
Research is discussed in "Under Our Skin" that found the majority of a group of Alzheimers-infected brains tested post-mortem to actually be infected with Lyme Disease.
People have also been misdiagnosed with MS who actually have Lyme Disease.
I meet people regularly,
As recently as two weeks ago,
Who have reports of such misdiagnosis -
For themselves, or for someone that they know.
Are they placque? Dendritic tangles?
Placque and dendritic tangles have been associated with Alzheimers Disease.
The white spots of MRIs have also been associated with Multiple Sclerosis (MS).
Research is discussed in "Under Our Skin" that found the majority of a group of Alzheimers-infected brains tested post-mortem to actually be infected with Lyme Disease.
People have also been misdiagnosed with MS who actually have Lyme Disease.
I meet people regularly,
As recently as two weeks ago,
Who have reports of such misdiagnosis -
For themselves, or for someone that they know.
So, what is happening as a result of the white spots?
Are the brain cells not able to communicate as effectively because of them?
Are they atrophied, or dead, areas?
Dendritic tangles?
Something else?
As with a stroke -
Which leaves a damaged area or areas of the brain that make motor or speech skills difficult -
Might this be similar?
Early on in my symptoms
I literally felt a 'fritz' in the upper left side of my forehead
When I was interrupted during time at the computer -
With too many cognitive tasks going on.
There is a cluster of white spots on the MRI where I felt that fritz....???
Are the brain cells not able to communicate as effectively because of them?
Are they atrophied, or dead, areas?
Dendritic tangles?
Something else?
As with a stroke -
Which leaves a damaged area or areas of the brain that make motor or speech skills difficult -
Might this be similar?
Early on in my symptoms
I literally felt a 'fritz' in the upper left side of my forehead
When I was interrupted during time at the computer -
With too many cognitive tasks going on.
There is a cluster of white spots on the MRI where I felt that fritz....???
And what is happening as a result of the de-myelination?
(God, that's so hard to spell right now. Reaching my limit here soon.)
Surely there is something connected to the way I feel and function that is connected to that.
(I keep having to correct what I type. leaving out verb tenses - combing words....)
(...and am now correcting a few typos as I edit to make this more readable 2/20)
(God, that's so hard to spell right now. Reaching my limit here soon.)
Surely there is something connected to the way I feel and function that is connected to that.
(I keep having to correct what I type. leaving out verb tenses - combing words....)
(...and am now correcting a few typos as I edit to make this more readable 2/20)
I take some comfort in what I know of the brain through my work as a music therapist.
People who have lost the ability to talk
San relearn speech through singing,
And relearn walking through rhythmic movement.
I take comfort that I can make new connections in my brain around any damaged ones.
I challenge myself to do this:
Playing the piano,
Learning new names,
Learning a new game.
Substitute teaching at different schools
And with different classes regularly was such a challenge -
Just remembering where I had to go!
I was very happy to finally learn the moves of 'en pasant' and 'castling'
In the game of chess this past summer:
Something I've been meaning to do -
And was SO GLAD to have been able to do it.
Wasn't sure that I could.
People who have lost the ability to talk
San relearn speech through singing,
And relearn walking through rhythmic movement.
I take comfort that I can make new connections in my brain around any damaged ones.
I challenge myself to do this:
Playing the piano,
Learning new names,
Learning a new game.
Substitute teaching at different schools
And with different classes regularly was such a challenge -
Just remembering where I had to go!
I was very happy to finally learn the moves of 'en pasant' and 'castling'
In the game of chess this past summer:
Something I've been meaning to do -
And was SO GLAD to have been able to do it.
Wasn't sure that I could.
My head is usually in a bubble.
But I try not to let that get me down. I
t is what it is.
Part of the new normal.
But I try not to let that get me down. I
t is what it is.
Part of the new normal.
I have some more about this, but....
For Now,
Thank you, Mary Wright Julius, for bringing this to me at Hanson Farm last week.
GEORGE STANCHFIELD'S TICK AND MOSQUITO SPRAY - Makes 4 ounces
2 ounces boiled water
1 ounce witch hazel
1/2 ounce vodka ("Tito's is the best")
25 drops peppermint essential oil
20 drops lemongrass essential oil
10 drops lavender essential oil
5 drops tea tree essential oil
Until next time.
Peace out,
Lisa
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