My caregiver took this video of me after vaso vagal syncope hit – pulse went down into the low 50’s, everything went blurry slowly and then started to swim in front of my eyes.
The next thing I knew I was “waking up” on the couch with the CG’s voice calling me back from wherever I went. In the past I would go out for 60 seconds or maybe 90 seconds.. but the CG said this one lasted about 10 minutes until I was back and talking to her. Quietly talking; it was hard to push my voice up to audible tones.
Now I’m back in bed. Each limb feels like it weighs several thousand pounds. I can communicate but more by text than by speaking.
May is Lyme Awareness Month. It’s Spring and ticks are coming out of the brush, climbing the grass and are dangling their legs, questing for a mammal or lizard to come by so it can climb aboard and have a meal.
This hasn’t been a problem for many centuries as this is a way that nature culls the human herd. But after Borrelia was studied and used as a bio weapon with no regard for the overall consequences, problematic cases have popped up.
Then there was the discovery of “Lyme disease” in the 1970’s — but that is from Borrelia burgdorferi, one of the 3 hundreds of types of Borrelia known to us.
Besides Borrelia there is Bartonella, Babesia, Ehrlichia, Anaplasma, Mycoplasma, Rikettsia, Tularemia, etc etc etc
(This is why I’ve defaulted to “BorreliaEtc” even when Borrelia is such a small part of the problem.)
So what gets to my brain and shuts everything down? Wish I knew. I can tell you it’s scary. Quite sobering to see the recording of me there, but not there.
Saturday 4 May our family will be out by the ‘Welcome to Purdy!’ sign, and we welcome anyone who wants to join, or even stop by for a little bit!
Why do we do this year after year?
Tick numbers aren’t decreasing, in fact in recent years we’ve seen significant increases. Disease reports have increased as well. More people are seeking support through this battlefield of illness.
So we come out to remind you to be prepared.
Many species of ticks live here in the Pacific Northwest; each type carries their own risk of different infections.
Be prepared even in your own front and back yards. We are seeing the effects of climate change on ticks – it’s good news for them, bad for us. Ticks are being found further north than ever before. Temperatures don’t go low enough during the winter, any more, for them to seek shelter, they love the mild winters we are having.
The numbers of disease are rising at an alarming rate, yet “Lyme” is still used as a punchline in sitcoms.
The narrative around Vector-Borne Diseases needs to change. So we rally. We talk with people. We share what wisdom we can.
You can show your support! Do you have a shirt or pants that have the color lime green in them? If so, PLEASE wear them this month! You are showing support to a community that is millions strong and worldwide. It will be much appreciated.
You are welcome to pull into the parking lot to say hello, tell us your story and/or ask us any questions.
If you can’t leave your car, please show your support for your neighbors and WAVE or HONK your horns — we’ll be at the Spit from 2-4p.
This year we are donating Tick Ease tools to our Fire Department, our free clinic, our veterinarian, the local nursery, and a professor who teaches nursing students… if we can think of anyone else we will try and provide for them the best tick removal tool we have so far. http://www.tickease.com
We want our community to be as safe as possible and not go through what we do.
For every picture and video that I have of me walking Saathee, playing with her, training, etc… it costs me. It costs mental and physical energy that leaves me exhausted after.
I wouldn’t wish this experience on anyone.
The Global Lyme Alliance just shared that:
The latest CDC data indicates that there are more than 427,000 new cases of Lyme disease in the U.S. each year. This is a 30% increase in just one year.
The mice told us from their 2015-16 increase in numbers that tick numbers would increase dramatically by 2017… and with the help of climate change, more tick numbers and species are surviving across the world in places they couldn’t before.
Please, please read Mary Beth Pfeiffer’s book Lyme Disease: The First Epidemic of Climate Change (www.thefirstepidemic.com) for more specific information with resources.
Advocates braced ourselves for one helluva year. We are still trying to sort out this new community landscape; I’ve met more people suffering here in WA State in 2017-18 than I knew in my first 5 YEARS of advocating here put together. The calls, emails, and messages haven’t slowed down now that it’s 2019.
At the least we are still trying to process what is happening in our own bodies and minds, while still helping others with every last bit of energy we have.
It’s exhausting. Think of having maybe 3 spoons left on any given day… what would you spend them on?
It’s spring (!) some people said. They pointed to warmer temperatures and some flowers blooming in January. The CG (read: Caregiver) and I both said, hang on, it’s not yet February and you’re ready to declare Spring? I know we are headed that way but not there yet!
It just happened to be the day Papa Matt and I are headed into Tacoma to pick up puppy. Thankfully the vehicle is safe for winter travel and we made it home without incident. It’s been months since we had her, my back is taking a while to heal and I have to start some physical therapy. I’m just so happy to snuggle with my baby. My now 1 year old baby!! Feb 28th will be a year since bringing her home.
I’m over the moon to begin with, puppy is very excited and this was showing her a brand new trail Papa cut in the back of the property!
And man there’s a lot of snow. Good thing I have awesome new boots that keep my feet warm. (Thank you Papa!)
Hopefully the snow melts soon so we can plan some socialization adventures. Forecast is saying chance of snow for nearly a week. So, fingers crossed.
Ok. Night night.
On the 10th of January 2019, a month after he turned 97, James McCorkle – my maternal grandfather – passed away in his sleep.
Born in Glasgow in December 1921, he was a pilot who flew in the Royal Air Force before, during and after WWII. (There are many stories worth sharing; he was the first helicopter pilot to catch a terrorist, had him running up a tree! I would urge anyone who wanted to read some of those stories to get a book called Time Just Flew by JF McCorkle and edited by Lorraine Hart.)
His grandchildren called him “Poppa” and “Grandad.” He was a complicated character, of another time (he didn’t believe college education was worthwhile for any of his 4 daughters; girls should be finding a husband for example) but he loved his children, grandchildren and great-grandchildren the best he could.
RIP Poppa. I can say it’s extremely relieving to no longer have you stuck in a bed like a prisoner of your own body. But it’s also been very hard to take this in. It’s still coming in waves.
The stress has caused a raise of symptoms. I saw my therapist last Friday and cried through most of the hour.
But then there’s this:
The day Poppa passed away – I got an email from a distant cousin in the United Kingdom who has been searching in Ireland and Scotland both, to break down a brick wall in our mutual family trees. Before, we knew twin boys born in Ireland around 1825 were sent to Scotland to learn new farming techniques. They show up in the 1841 Scottish census at only 15 years old, James and John McCorkle.
My cousin found the boys parents (!), and when we started looking at their information we were able to unlock more and more generations – back to the early 1600’s!
Family history is fascinating to me. I research diligently, wanting to keep my brain active. It’s one thing that helps me engage my brain. I’m not in school, but I still learn something new nearly every day.
Our Yule seemed to fly by, the best thing was my older nephew (13) turned onto a crow, flying around the house and calling out, “ka-kaw!” when he opened his special gift. We are all going to Los Angeles in May to see Harry Potter World. This will be very special as we’ve never had a family trip with all 3 generations. His reaction was priceless! (Don’t worry, we will still have a Lyme Rally in May!)
Soon Lorraine and I will start our video section of this website. We have a camera set up and we are just talking about how to organize ourselves in this newer project. If you have any suggestions, questions, things you’d love us to talk about, anything! please share.
Oh, my hair was trimmed by a friend. Up to my shoulders. It’s so bouncy and healthy looking again.
Currently I’m taking CBD Oil as my only treatment for tick infections – it is working beautifully! Prime My Body is an excellent, nano enhanced oil. Both Lorraine and I take it, her for hEDS (hypermobile Ehler’s Danlos Syndrome) … the oil is amazing. It helps pain, anxiety, sleep and more as well as treating BorreliaEtc. Time to scan in symptom charts for the case study we are doing. And yes I’ll put them up here.
Much love to everyone, and Happy New Year!
I haven’t been working here as constantly as I should be… because I broke my back training my puppy. But happy holidays to everyone. Only a few more days until January brings us around into a new cycle, new possibilities, the New Year.
Merry Christmas, if that speaks to your heart.
Peace, Love and Joy to all, and to all a Good| night.
It’s been longer than I had planned on updating, my apologies, but right now we are integrateing our puppy more into our lives. The thing is, she’s still a puppy. We are still working on getting her obedience solid and with family she’s great!
However, she hasn’t been socialised enough with her trainer being busy at his day job. Now she’s 11 months old and I have a problem to correct that my trainer created by getting another puppy at the time when he should have been concentrating his “precious little extra time” (his words, not mine) on the service dog he agreed to help train.
She’s 70lbs of German Shepherd Dog who barks at a person coming close to her or dogs. Especially dogs. So I need a way to give -me- more confidence in our lives as they combine, and I’ve founda wonderful course by a service dog trainer that is helping with exactly that!
One of the main issues in this house is our two cats don’t want anything to do with her. They just aren’t having it with Saathee’s energy level and her heightened herding instincts.
I get it. We are teaching the puppy, finally correctly, not to rush up to the puppy gate. We are getting her obedience to a level that we can give commands from a distance. But the cats don’t know that.
(Though Joni loooooves to watch Saathee’s training sessions. Lol)
They’ve just seen all the times the 70lbs monster has made her way through the cat door and we didn’t prevent it.
I get it.
So this course gives me a concept from day one of week one that was greatly lacking – eye contact. Now I find her looking up at me a lot, to check in, tosee where I’m looking…
We worked on eye contact, then eye contact in motion on a leash… then the lessons start to build in obedience each week from there. It’s not a beginner’s course, one needs the basics down. It is just what I needed, and pup is certainly enjoying learning new things.
It’s been $@#£’n awesome to see the results over the last three weeks. Of course being consistent with training when you’re ill is hard enough, but I’ve had (1) muscles in my back thrown out (and pinching my sciatic nerve in the first week) AND I had (2) a Sphenocath done 27 Oct.
What is a Sphenocath? you ask?
It’s putting a medicine into a sinus pocket that has a nerve bundle with a direct and short link to the brain. Said medicine blocks pain receptors in this powerful nerve bundle. The primary use is to relieve chronic migraines, but we are hoping with me maybe it will help with abdominal migraines? Maybe. And maybe it’ll help with general pain? Maybe. We’ll see. So far my head pressure has lightened!
How do they do this procedure? you ask? It’s a small syringe (no needle) up the nose (you are given lidocaine to freeze the nose, I didn’t feel anything until the actual medicine poured into the pocket, no pain felt at all) while you lay on your back on an exam table, head tilted back a little.
If my back hadn’t hurt so bad, it wouldn’t be such a bad memory… but that procedure was hard. Grade 10 hard. It made my internal temperature raise 4° in just moments!! (my doctor was learning this procedure, so I got to volunteer to have her train on me) and I had N/V come on so fast once the sweat started and my body felt cold and wet, yet hot… arg.
I had to hold my head straight enough that I didn’t move the medicine, but over enough so I didn’t choke on my own vomit.
I also was so weak I couldn’t move any limbs, couldn’t talk for about a minute.
My doctor says, “you’re always my one patient!”
Really not a nice memory. I came out thinking I’d never, EVER, do that again.
Days later, after the bad taste of lidocaine plus the medicine dissipated…
I am seeing less head pressure now than I have in years. That alone is huge, but that’s not all. And though at this moment, as I write, the brain fog is strong… I can still recognize the fog, not just feel “this is my brain’s existence.” I can observe myself with a lot more clarity.
That is incredible and I’m already feeling like I might repeat the process if the good results continue. I haven’t had a migraine since before the procedure, another plus. You’d think, wait… waitwaitwait… you’d do that again?!
The thing is…
10 minutes of hell and a day to recover that I can plan for
these exact symptoms (and more) coming randomly WITH the migraine headache that I cannot plan for…
Yeah. It’s a wait and see game, kinda like with the cats and dog. Lol
Please… watch this video. Avril Lavigne had to take a 5 year break from performing because she fights BorreliaEtc. It’s powerful, it speaks directly to what so many of us go through… it’s hauntingly beautiful.
I still can’t stop the tears from falling, and I’ve heard this so much I know every word by heart. It’s incredible. Moving to the core.
I’m sorry it’s been too long since I’ve updated. We had Saathee Shadow for over a week, but Matt went to New York for a week so she’s back with her trainer during that time. We will go get her when Matt comes home because now she has to spend more time with me and with us. A lot of her behavior is gorgeous, but there are issues to get to before she gets too old. (She’s 10 months old.)
I can get her to return to me when there’s a cat, a bunny… her basic obedience is excellent.
But she barks. Part of that is her confidence in being with me. So far her life has mostly been with her trainer, an able-bodied person who can give her a lot more than me as far as energy. Only about once a month would she come home for a visit and in the beginning it was 2, 3 days… the last visit was 10 days. Now it will be stretching into being home for weeks.
I’ve signed up for my own training course with a service dog trainer to help with my confidence, an 8 week course. So when I pick her up we will be doing one specific exercise a week.
I’m looking forward to it. 🙂
But I’m also looking forward to the week of quiet.