RIP Poppa (& Happy New Year)

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!

Incredible..

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!

Happy Holidays!

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.

Life… Or Something Like It

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 $@#ยฃ’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 4ยฐ 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.

But.

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

vs

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

Avril Lavigne – Head Above Water (Official Video)

Head Above Water

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. ๐Ÿ™‚

But I’m also looking forward to the week of quiet.

Adding a New Diagnosis

Over the past two decades I’ve collected an impressive list of diagnoses along with the tick-borne ones – I’ll give you a taste from my first diagnosis and then in no particular order:

  • heartburn (that was the first guess when I couldn’t stop throwing up at 18 years old)
  • gastroparesis
  • epstein-barr virus (EBV)
  • postural orthostatic tachycardia syndrome (POTS)
  • multiple sclerosis (MS)
  • early menopause (age 22)
  • hypothyroidism
  • dysautonomia
  • human herpes virus 6 (HHV-6)
  • chronic fatigue (CFS/ME)
  • abdominal migraines
  • bell’s palsy
  • temporary idiopathic paralysis of the left leg
  • slowed nerve conduction
  • cluster headaches
  • vaso vagel syncope (VVS)
  • ankle and leg tendonitis
  • chronic pain syndrome

 

…and like the list of links in Meet The Family, that’s simply off the top of my head.

Well yay (?) at my latest Primary Care appt I got to add another diagnosis.

*facepalm*

  • polycystic ovary syndrome (PCOS)

Now this sounds a lot more scary than it is. Let’s see what a little Google search says.

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Thanks. I’m becoming more like a man every day. A frustrated-because-my-hormones-aren’t-where-they-should-be person. But without the energy to throw a proper tantrum, I’ll resort to blogging about how surreal it feels. Another diagnosis. I should get to have a punch card.

This diagnosis is validating because I have WEIRD symptoms – like hair on my tummy that wasn’t there five years ago. Seriously. And hobbit feet, but I’ve had those all my life and I’m part of the extended Baggins Family.

Ahem, where was I?

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I do have a “high normal” amount of testosterone according to my July blood draw. At my age range it becomes high at the numerical value of 146.

I’m 145.

My estrogens are “normal low” but progesterone is low. Thankfully I don’t have acne, but don’t count that out yet, I’m only turning 38 in December, remember? (I’m trying not to feel old, but I have reached that point where EVERYONE on tv is suddenly younger than me! When did this happen??)

Now the part about cysts are scary, and enlarged ovaries, and connection to endometriosis… C’mon Universe, really?

Nevermind, I didn’t ask that. Really, it’s okay. Go back to sleep Universe. Nighty night!

So… treatments?

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Birth control? Nope, have had blood clots in my lungs. (Oh yeah, I forgot that diagnosis before… certain ones you want to forget.) So all the hormone stuff is a no-go. I should make an appointment with my GYN, thankfully I have a really great one that I can tell anything to. She was one of the first people I came out to outside of the LGBTQ community. She’ll help me make sense out this, “don’t worry, you’re becoming a man” thing.

Right?

And also I’m not doing statins or anything because my BP is already low and I’m having trouble with this dancing pulse. When I was diagnosed with POTS my average pulse was 110. BP is average 90/60. Now my pulse is sinking to the 40’s, sometimes even the 30’s! Other times it shoots up to 156. I’ve been to the cardiologist, my heart is strong and there is no evidence of anything but VVS. But we are not messing with my pressure.

And I don’t have diabetes, my blood sugar is usually good when I keep up the IVs. I’ve been so tired lately that starting my IV fluids seems like such a daunting task… like climbing a mountain would be easier.

This is your mind.

This is your mind on BorreliaEtc.

No questions, too tired.

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Recycling for BorreliaEtc

Anyone who faces chronic illness knows how medical containers pile up. Supplement bottles, vitamin bottles, protein powders, electrolyte additives, tincture bottles, glass bottles, plastic bottles, etc, etc… and I do mean pile.

(Remember those boxes Jordan Fisher Smith empties in Under Our Skin?)

Well, someone finally got ticked off enough to do something about it.

(Like my pun & plug?)

I was so excited to hear about this program – one USD going to BorreliaEtc patients in need for every pound of recycled goods. I signed up and then inquired about collecting at the picnic – I was so happy when they replied with equal enthusiasm!

But empty bottles isn’t where this program ends. The Ticked Off Foundation (TOF) sent me these Recycle For Lyme (RFL) images to use so it becomes super easy to explain the program. (Special thanks to Stephanie. โค)

So now beyond supplement bottles, there is also nutritional package recycling. All brands are accepted!

Oral care, toothpaste, toothbrushes, deodorant, mouthwash, soap packaging, floss containers, and more…

…and lastly…

Make up, lotions, hair care… there is a nice big list in this category.

My family will be collecting all of these containers at the picnic (September 15th at the Pt. Defiance Park Gig Harbor Viewpoint in Tacoma, WA, starts at 2p) so please bring any of the mentioned items to the picnic, and please think about signing up with RFL yourselves, no matter where you are – you can help!

If you have any questions please check out the FAQ page on the RFL site, or leave a comment and I’ll help as best as I can!

Thank you so much for helping.
๐Ÿ’š

 

Annual Picnic

It’s incredible how quickly a year can pass. It seems like just yesterday we were preparing for the 15th Annual Potluck in 2017… but here we are 11 months later…


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Harts Of Lyme is happy to be sponsoring WA’s 16th Annual Potluck Picnic for those who live with BorreliaEtc and their families/caregivers! We’ve booked Pt. Defiance Park, the Gig Harbor View Point Picnic Area (along 5 Mile Drive) for the 3rd Saturday of September.

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Topics we are hoping to talk about:

Pranayama Yoga and Meditation
Medical Cannabis
Qigong Healing

But as normal (last year was very special) all we truly “plan” for is for an afternoon of relaxation, conversation, support and sharing with wonderful people and equally wonderful food.

There is no cost to attend, if you wish to donate towards next year’s picnic there will be a donation box but it is entirely voluntary.

Important details:

Who: patients with chronic, complex illnesses and those who support them (family, friends, medical professionals, other interested community supporters and even well-behaved four-legged friends).

What: The 16th Annual WA Lyme Picnic (a potluck) sponsored by Harts of Lyme (patient Anna and her parents Lorraine and Matt). This is a special event for the Community at large to gather one more time before winter settles in, it’s a low-key social gathering.

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Please RSVP to either [Facebook] event page. You are welcome to send a private Facebook message or email Anna at borreliaetc@gmail.com

If you have any questions, please ask away!

When: Saturday, September 15, 2018 from 2 p.m. til we go home

Where: Point Defiance Park, Tacoma, Washington, Gig Harbor Viewpoint picnic area/shelter.

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Follow Five Mile Dive from the park entrance to the event area at the tip of the peninsula. We will put up green balloons to help lead you.

To learn more about this picnic area and view a map, follow this link:

http://www.metroparkstacoma.org/point-defiance-gig-harbor-picnic/

There will be a parking lot and handicap-accessible restrooms just a few steps from the picnic shelter.

Why:ย  Our mission and vision of this event is to share a relaxing afternoon and evening where we can reflect, share, have conversations and visit with old friends and welcome new ones in a beautiful and tranquil setting.

What to Bring:

Yourself and those who support you!

This picnic is a potluck so we ask that you to bring food to share with others.

***Due to the dietary restrictions for many, please note the following guidelines: please bring a written ingredient list and specify whether your food is organic or nonorganic; this information should accompany your potluck contribution on the table.

Please try to avoid the following ingredients:

  • gluten
  • dairy
  • alcohol
  • sugar

We look forward to your delightful dishes! Many thanks in advance. Some may want to ask for recipes (it’s happened before, we are talking of a very imaginative community!) so you may want to bring a notebook.

Please bring your own beverages (important note: alcoholic beverages are not allowed in parks). The Harts will bring water and there is a sink at the pavilion.

The shelter is reserved with minimal seating and tables. Please bring your own chairs or blankets to make yourselves comfortable.


Oh, are you drowning in bottles of OTC meds you don’t need anymore?

And what if I told you that shampoo bottle and toothpaste tube you just finished could help patients with BorreliaEtc?


The Give Away Table

Bring your extra OTC supplements and vitamins! Bring books you’d like to pass along! Business cards to share!

Please bring anything to the park for others, we will happily set up a Give Away table. With supplements et al please check expiration dates. (Remember, “sell by” dates are very different than the product expiring. I’ve had many doctors tell me that pills last years beyond expiration dates, though they do lose some efficacy. Capsules are the same, though they don’t last as long as pills. Remember, check the dates and only take what you feel comfortable with.)

Thank you in advance for helping and supporting others!

Plus Anna is signed up with the Recycle For Lyme program (as are others!) so we can recycle supplement bottles that are done, tincture bottles, sports drink packages, shampoo bottles and other materials!

Even prescription bottles (but hang on, more on that in a moment)

More information can be found onย their website.

***Prescription bottles go to a different place than Recycle For Lyme. A church is accepting used Rx bottles to pass along to those in need.

Thank you to the TOF for this great recycling program!


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Please DONโ€™T bring:

Picnic supplies, such as plates, napkins and utensils. Weโ€™ll supply all of those.

To maintain a comfortable and safe environment for all, this is a fragrance-free event. This means please refrain from wearing any perfumes, scented body-products and scented clothing (from laundry detergent to soaps and shampoos). No smoking or vaping of any kind will be allowed at this event.

You are more than welcome to take photos (please ask people you don’t know their preference) but we ask that you do not record near the pavilion nor the circle. If you want to do a Facebook Live, there are beautiful trails to walk to just feet away from the shelter, or there is the beautiful backdrop of the Salish Sea about 200 yards away, across Five Mile Drive, where privacy can be respected.

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To keep a low-key and relaxing environment for guests, loud music and noisy games, sports equipment or the like will not be allowed.

While children and dogs are welcome to the event, please keep in mind that we want to keep the environment as tranquil as possible for our patients.

The weather in the Puget Sound region of Washington State is lovely in September.ย  Weโ€™ll post weather updates as we get closer to the event so that you can be prepared.

We are looking forward to seeing you all!!

Anna
๐Ÿ’š๐Ÿ’š๐Ÿ’š๐Ÿ’š๐Ÿ’š