Good Grief – a Poem


GOOD GRIEF

The origin of the word trauma

Is not just “wound,” but “piercing” or “turning,”

As blades do when finding home.

Grief commands its own grammar,

Structured by intimacy & imagination.

We often say:

We are beside ourselves with grief.

We can’t even imagine.

This means anguish can call us to envision

More than what we believed was carriable

Or even survivable.

This is to say, there does exist

A good grief.

The hurt is how we know

We are alive & awake;

It clears us for all the exquisite,

Excruciating enormities to come.

We are pierced new by the turning

Forward.

All that is grave need

Not be a burden, an anguish.

Call it, instead, an anchor,

Grief grounding us in its sea.

Despair exits us the same way it enters-

Turning through the mouth.

Even now conviction works

Strange magic on our tongues.

We are built up again

By what we

Build/find/see/say/remember/know.

What we carry means we survive,

It is what survives us.

We have survived us.

Where once we were alone,

Now we are beside ourselves.

Where once we were barbed & brutal as blades,

Now we can only imagine.

Call Us What We Carry

Poems by Amanda Gorman

National Youth Poet Laureate

(Page 28)


Amanda Gorman: Using Your Voice Is a Political Choice (TED Talk)

42!

It’s my birthday!!!!!!

And I’m having a beautiful day already.

Looking At Maps

This is National Geographic‘s map of the migration of birds throughout the American continents.
Now this is a screenshot from Dr. Joe Burrascano’s presentation on newer ImmunoBlot tests that IGeneX has developed.  (The upper map in green is an incidence map of Borrelia burgderfori.)
Likewise, this is a screenshot of another video (watch the full video below) that goes through IGeneX testing.

It shows that they are watching the spread of many tick-borne infections. But as a start, I only wanted to look at Borrelia burgderfori, so I clipped out that map.

IGeneX’s incidence map of Borrelia burgderfori in 2020.

Then I laid the Nat Geo’s map over IGeneX’s map — and, well — see for yourself:

Superimposing the two maps shows clearly that there is a correlation between where birds go and where we see tick-borne infections. Moreso than deer, birds are the #1 way ticks get around.

Those maps match up extremely well.

(Here is the video that explains some of IGeneX’s tests. )

24 October, 2022

The Alphabet of Caregiving

Lorraine has been working on a project — this will go in the Caregiver’s Corner eventually with alt text, but for now I only have images.

More to come..

New phone theme!

I have a new look for my phone, and I’m quite pleased. I love the luna moth especially since the CG and I first talked about it being a wonderful mascot for tick infections.

A Luna Moth theme design for Samsung SmartPhones
A Luna Moth theme design for Samsung SmartPhones

Support Seshes Coming Up!

In the past 5 months Lorraine and I have been working with a group of wonderful people, who are also disabled, to set up a general support group on the Second Monday of the month.

This is not a BorreliaEtc group, it doesn’t matter the type of disability one walks with.

Around The Fire Support Seshes were born.

A group sitting around a fire, talking.

Text says: "Around The Fire,  BIDWKB"
Around The Fire, a peer support group for disabled people by disabled people

If you’d like more information, please contact us privately by email.

This group has worked so well that we were asked if we could expand our scope. We have around 10 people per sesh, which is a good number for the 2 hours we have.. but some couldn’t make the original time (it is late for Europeans) and some people wanted to meet more regularly. Beyond that, we had caregivers join us and so we now have three groups:

1. The Original Sesh stays the same, the 2nd Monday of the month at 2p Pacific USA Time, 5p Eastern USA, 10p British Summer Time.

2. The Caregiver Support Sesh is on the Second Sunday of the month at the same time as the original group. (2p Pacific, 5p Eastern USA..)

3. The Additional Support Sesh is on the last Sunday of the month and is at a different time: 12 Noon Pacific Time, 3p Eastern USA, 8p British Summer Time, 9p Eastern France and German Time


September Seshes:

🔥 Around The Fire 🔥
Caregiver Support Sesh
Sunday 11 Sep
5p EDT (2p PDT)


🔥 Around The Fire 🔥
Disability Support Sesh
Monday, 12th September
5p EDT (2p PDT)

Contact us for more information


🔥 Around The Fire 🔥
End of the Month Additional Sesh
Sunday, 25 September
3p EDT/12p Noon PDT

A crystal ball with a fire lit up inside. Text says "Around The Fire" and "BIDWKB"

National Improved Medicare For All – Thursdays With Tracy 21 July, 2022

Last month a dear friend, Tracy, asked me to be the guest host for her 21 July, 2022 podcast whilst she was busy working on organizing her state’s Medicare For All march. Since M4A was the month’s topic, I quickly looked around for fellow advocates to join me on screen.

By some incredible divine intervention, I was able to scramble together an excellent panel!

There was myself, the CG*, Laura Fielding (craftivist, founder of Red Berets Medicare For All), Andre Stackhouse (Campaign director and board member of Whole Washington), and Congressional Candidate Rebecca Parson (WA-06).

When I do projects like this the CG is always at least in the room so she can be close by if something happens with me.

Best scenario: she helps me stay on track when my brain blanks, or can’t catch up.

Worst: she rescues me from a sudden onset of symptoms.

*And I want to say: Lorraine loves when I call her “the CG.” It’s using her professional title and said with nothing but love, honor, respect, and humility.

Here I have to stop and thank everyone that joined me; you all made time in your busy schedules to talk to me for a small podcast. You could have said you were busy, but you didn’t.. you all put in the effort and I cannot thank you enough.

The general subject was Medicare For All, but the discussion covered many topics:

  • The many marches happening right now across the country (Indiana, Washington, California, New York, North Carolina, Washington DC, etc)
  • Activism for state-wide single payer healthcare in WA State, how http://wholewashington.org got started
  • Ballot initiative 1471
  • National vs. State-by-State strategies and http://medicareforalleverywhere.org
  • The documentary “Healing Us” about the for-profit healthcare system in the USA
Thursdays With Tracy, 21 July episode.

We are all Western WA residents and the CG and I volunteer for Whole Washington’s 1471 ballot initiative campaign.

If we were to get single payer healthcare here in Washington State, it would be an incredible step forward for the many patients of tick-borne infections who live here. We need to see doctors who dare to treat outside the normal guidelines, therefore they don’t deal with insurance at all. In order to cover their practice, many charge hundreds of dollars per appointment. Some are even up in the thousands..

Most patients cannot afford that.

Insurance companies should not have the right to refuse you a treatment that you and your doctor have agreed upon.

But they do.

“Healthcare” is a misnomer in the USA; the for-profit industry is keeping sick people sick and the only motive that drives medicine is profit.

Since Borrelia is a bacterium, antibiotics are the main line of defense doctors use. But most abx for most bacterial conditions are prescribed for only 2-3 weeks. It’s not a long-term profit and therefore finding new abx is not a priority.

That is insane, to me.

In 1980 the US government decided to allow researchers to patent and profit from living organisms. For example, a scientist could discover the causative agent of an infection and then patent that organism so whenever vaccines are made, or new treatments are found.. that researcher could get their cut.

From that point on researchers and universities were no longer driven for the common good. They wanted their money.

That has to change.

#medicareforall #medicareforallEVERYWHERE #m4a #healthcare #medicalpatents #yeson1471 #wholewashington #lymedisease #borreliaetc #healthinsurance #forprofitmedicine #activism #marchforhealthcarejustice #capitalismkills #latestagecapitalism #2022election #universalhealthcare #peopleoverprofits #brandnewcongress #notmeus #Lyme #borreliosis #healthblog

The Stages Of Grief Simplified

Towards the end of April this year, my biological father, Douglas, died. One night he wasn’t feeling well, was dizzy and not making sense with his words, so his girlfriend called 911.. they brought him into hospital to rule out things like stroke.. only to find he had an abdominal aortic aneurysm and died on the operating table in the early hours of the morning. There is very little the doctors can do for you.

It’s been hard for me to process because I’ve been physically, mentally, and spiritually distant from him since he would not believe I am ill. He would take cheap shots at my mother; that was the only way he could express his pain from their separation. He drunk the rest of it away for most of his life.

But then there were times he’d play his guitar.. we’d both sing.. and all would be right with the world for about 3-4 minutes. I grew up listening to him play all kinds of music live, it was great.

But aside from music, we lost our connection. I would have to be the one to visit him, he never came out west save for once in 2002. I was 21 years old, getting married, and looking forward to starting a somewhat normal life.. he arrived right before the ceremony and left less than two hours later. Never even made an effort to spend any time with me.

But I wrote to him for years with no answers. I called him, sometimes from my hospital bed. My brother became so distressed at his lack of regard for me that he ended up moving out to the West Coast in 2008 so he could have me and our mother nearby.

Now the only time I find myself emotionally connecting is when music plays that I’ve heard him play. That will bring me back.. thank goodness for music.

A friend painted this picture of me from a photo and I added 5 positive words and 5 negative ones: grief, life, death, pain, hope, music, regret, growth, distance.
A friend painted this picture of me from a photo and I added 5 positive words and 5 negative ones: grief, life, death, pain, hope, music, regret, growth, distance.

A friend painted the following picture from one of my photographs.. so I added words of grief over it. Speaks perfectly to what I’ve been feeling since getting this news.

Which Tick, What Pathogen, & Where?!

When I put up the first video, some questions started coming in.

  • Where would I find ticks in my yard?
  • Which ticks are in my part of the country?
  • What should I do if I find a tick on me or a loved one?

But the one that surprised me the most?

  • What does a tick look like?

When I finally picked my proverbial mouth up from the floor, I realized that there are people reading this site who have never seen a tick with their own eyes.

I promised to provide the knowledge and tools necessary to navigate safely. So… ladies, gentlemen, and non-conformist individuals, allow me to introduce to you to a tick.

© IStock – a drawing of a tick underneath a magnifying glass

Above is a stock image depicting a tick. Most are brown in color, or reddish-brown, and resemble a flat* raisin with eight jointed legs. The legs have hooks on the ends that they grab on and climb with. They are arachnids so they are cousins of spiders, scorpions, and mites.

*it looks flat until it’s having a meal. Some will also change color as they feed.. more on that later.

Let’s call him: Dick. It feels right, yanno? Dick The Tick.

Dick has a mate, Etta, who has quested for a decent-sized mammal because she is reaching the end of her life. When Dick sees Etta is taking in a large meal, he takes his spermatophore (a little sack of sperm) from his “genital pore” and puts it in Etta’s genital pore.

I kid you not, read this Slate article for more details. The author likened tick procreation from the female side to getting “interrupted at breakfast by the UPS guy, with a package of perishables.” 😂

The thing is: if you look at a more realistic image (or an actual picture), that “raisin” has 2 claws protecting what looks like a blade of a chainsaw in the middle of its mouth parts. That is called a hypostome.

An Ixodes scapularis or Deer Tick

When most people see this up close they squirm, cringe, and wonder how much the bite hurts. They are surprised, but relieved, to learn that they wouldn’t feel a thing with most pathogen-carrying ticks!

The tick species that most transmits BorreliaEtc, the Ixodes, has a lidocaine effect in its saliva. It opens the skin with its claws, then uses the hypostome like a straw to take a meal.

Many people who become sick with BorreliaEtc don’t remember ever feeling a tick bite.

Besides the lidocaine effect, ticks have anticoagulants in their saliva so the blood will keep flowing. They also have proteins they pass into our bloodstream that fool the immediate surrounding tissue into not reacting via immune system.

All of this together means that when we don’t feel the bite and our body is told not to fight the bite – the parasites the tick is carrying will enter our body without the slightest bit of pushback.

Ticks are so well-adapted to carry pathogens (they don’t get sick!) that we humans have studied them for biowarfare. Kris Newby’s book Bitten details the evidence in pictures, with both written and spoken testimony.

Let’s stay with the Ixodes (“ick so deez”) that are commonly called Deer Ticks. They are the type you will see and hear about most when Lyme disease is the main topic.

Here is the tick life cycle with some details, courtesy of the CDC:

Deer Tick Life Cycle

Image ©CDC
Deer Ticks live for a 1-2 year life cycle
Eggs -> Larva -> Nymphs -> Adults
©CDC – ticks live for a 1-2 year lifecycle.
Eggs -> Larva -> Nymphs -> Adults

Though I linked the image above to the CDC (that is where the image comes from) I urge you to question the claims the CDC makes.

Ultimately it comes down to money. We don’t survey every county in every state to have a real idea of tick distribution in the USA. We don’t study the infections enough. The authors of the *IDSA’s Lyme Diagnosis & Treatment Guidelines nearly all have conflicts of interest.

(IDSA = Infectious Diseases Society of America)

If you want to know what we have been fighting, please watch Under Our Skin. Especially from time stamp 42:32 to 44:30.

Those two minutes will explain our biggest complaint with the CDC: profits over people.


Back to ticks.

I found this map on a veterinarian’s website, color-coding what areas of the country we have to be careful of ticks in what time of year.

I’ll make it easier:

(Sorry, I didn’t label Alaska: May-Oct.)

It took not even a minute for me to put a palm to my face. This map is woefully behind current data at best, and misleading at worse. Climate change, deforestation, and overall human influence on nature has expanded the natural habitat of ticks. We’ve also found out that ticks can survive in colder weather than we previously thought.

EVERYWHERE on that map should be purple. All 50 states have pathogen-laden ticks in their borders year round. Snow fall actually insulates the ground; we are learning so much about the survival of ticks that changes the entire game.

I remember a time when the argument was: “Ticks can’t cross the Mississippi River! That’s an East Coast problem.”

Once a surgeon told me and my caregiver that she moved her family from the Midwest — where her babies came inside from playing and she found ticks all over their groin areas(!) — to the West Coast because she was told there are no ticks out here. (I hated bursting her bubble on that one.)

Birds can fly over rivers, giving ticks a first class ticket to visit other parts of the country. Deer/horses/moose/etc can swim. Ticks have all kinds of methods for conquering their environmental challenges.


Of the (approx) 90 types of ticks we have in this country, 9 of those species can transmit dangerous pathogens to humans. They are the:

  • American Dog Tick
  • Brown Dog Tick
  • Blacklegged (or Deer) Tick
  • Western Blacklegged (or Deer) Tick
  • Pacific Coast Tick
  • Rocky Mountain (or Wood) Tick
  • Lone Star Tick
  • Groundhog Tick
  • Gulf Coast Tick

We used to divide the USA into 4 areas: the West, the East, the Midwest, and the Gulf Coast. However, ticks that were once only on the Gulf Coast are now found up the Atlantic Coast and in the Midwest. Now we have condensed the areas into 2: the West and East.

Let’s start with the West.

Screenshot of Google Maps of the Continental USA, encircling the western populations of ticks. (the blue dot is my GPS working lol)

These are the 4 ticks to be on the lookout for in the West:

In the West you will find the Western Blacklegged/Deer Tick, Rocky Mountain/Wood Ticks, Brown Dog Ticks, and Pacific Coast Ticks.

(The American Dog Tick is growing its territory and is coming into the West. It was first reported in Colorado, then it was all over the lowlands of the mountains.)


Then there is the East. I am focusing on the United States of America, where I live. If you are in Canada or Mexico (or Europe, or Russia, China, or the Caucasus..) look up your country’s statistics, but pay attention to your neighbors too. Ticks don’t respect borders, they follow their senses to CO2.

There are 7 types of ticks native to the Eastern US that will give humans infections.

The 7 types of ticks that you should watch for in the East.

And by the way.. there’s a new guy in town.

There is an East Asian Tick that showed up recently on American soil in New Jersey. It’s called the Asian Long-horned Tick. We aren’t sure how, but it’s very possible they were on a person or in luggage) and were brought to America unknowingly.

This is the first time we’ve caught an invasive tick species in the USA, but some researchers wonder whether this has happened before but we just didn’t have the knowledge nor technology?

Asian Longhorned Ticks . The main difference is in their mouthparts)

Each of the ticks mentioned carry their own cocktails of infections. Most of them carry borrelia, relapsing fever, or types of both. Other possibilities are Bartonella, Babesia, Ehrlicia, Anaplasma, Q fever, and others.

One last thing.. the longer a tick has been feeding on you or a pet, the bigger it will get. The color of the tick turns lighter brown to a gray.

Tick ID Card with 7 kinds of ticks, what the different stages of life look like and the top 2 lines are
how they look after feeding. The two ticks missing from this are the Groundhog Tick and the Pacific Coast Tick.

The outside can be scary. Ticks and other vectors such as mosquitos and fleas pose a threat to our well-being. But I’m not trying to scare anyone into never leaving home – I love nature. If I was well enough I’d hike, travel forests, go to the beach, visit national parks.. I’d go everywhere I could. I’d just make sure I’m prepared for many outcomes.

In my own yard my parents and I keep our grass cut, we have wide trails for walking in our forested back yard, we keep natural pest repellant for our bodies and our animal’s bodies.

We have to be careful about using chemicals on our property (I’m highly sensitive) so we use products with essential oils rather than chemical repellents. We use Wondercide and it works well! If you are interested in trying it out, there is a 10% sale happening for the opening of summer! Please check out the website for more details.

(We are not affiliated with Wondercide in any way, it’s just a good tool!)


The best thing to do is a tick check when you come inside.

When you’re done with gardening, hiking, playing, walking in the woods, and all around enjoying the great outdoors, please follow these steps:

  • Throw your clothes into the dryer for 10-20 minutes on high heat
  • Get in the shower (washes away ticks that aren’t attached)
  • Check your body (and ask for help with those hard-to-see places like your back and head) for attached ticks
Don’t forget to check these places: the head, the hairline, around and inside the ears, armpits, hands (especially between fingers), sides, inside the bellybutton, around the groin, the buttocks, behind the knees, and in-between toes. Image copyright Lyme disease UK.

If you find an attached tick do not panic.

  • Get the right tool
The Tickease Tick Remover Tool found on chewy.com is my personal favorite removal tool.

Or..

The Tick Take, also on chewy.com

With your tool (tweezers work), take a firm hold on the hypostome and pull steadily up. Don’t yank, don’t tug, just keep pulling steadily and the tick will let go.

Put the tick in a bag or container you can close, and clean the wound on the body.

Next you want to report this tick to a university or program that will help you identify it. Have a tick tracking app downloaded and ready on your phone.

I suggest:

Or:

After you’ve taken the picture and sent your report in, put the tick inside a Ziploc bag with a wet paper towel so you can send that tick into a lab. Label the bag with the date, time, and where it was attached on your body. For more detailed instructions, read this page.

Send in the tick to a lab to be tested.

TickReport
www.tickreport.com
Telephone: (413) 545-1057

Ticknology
www.ticknology.org
Telephone: (970) 305-5587

TickCheck
www.tickcheck.com
Telephone:  (866) 713-TICK

IGeneX
www.igenex.com/tick-borne-disease-testing/
Telephone:  (800) 832-3200


Then keep a sharp eye on yourself or your loved one. If you start to experience any symptoms like a cold, or if you feel any joint pain and lethargy, please call your doctor as soon as you can. Repeat the information about the tick that bit you (when, where it was, etc) for your doctor and show them the picture you took of the tick, or the report the lab created for you.

How Many Annual Borrelia Cases In The USA?

Have you ever heard about a stadium called “The Big House” in Michigan? It can fit 107,601 people at full capacity.

Michigan Stadium, photo © 2009 Getty Images
Michigan Stadium, © 2009 Getty Images


It would take filling more than 4 of these stadiums to reach the amount of USA Lyme disease cases diagnosed e.v.e.r.y year. (476,000)

That’s an average of diagnosing more than 1,300 cases every day.

Borreliosis has been growing at terrible rates in the USA alone. When I first joined the Lyme community in the 90’s we were talking about 30k a year, then that jumped to 300,000 after 2006, then by 2016 we had 476,000 cases yearly. The numbers will only continue to grow exponentially unless we can come up with a real vaccine or truly educate the masses.

Take a look at this YouTube someone took of Michigan Stadium doing a wave.

It takes about 30 seconds for that wave to go all the way around. Over a minute for two cycles.

Now think about 4 of these stadiums filled to the rafters, standing room only. That’s the average of how many people are diagnosed with BorreliaEtc in the USA every year, and actually, we haven’t had an update in the average number of cases in years.

Please be careful when you go out.

Johns Hopkins University has good tips on how to protect you and your family. Read about them here.