Walking in a Real Winter Wonderland

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.

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 $@#£’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.

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. 🙂

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.

Screenshot_20180907-024259

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?

Screenshot_20180907-024650

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?

20180907_024906

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. ❤)

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.
💚