It’s our 8 week camp~a~versary. We are crusty in all the right places.
I don’t doubt you can smell me through the screen. My last “bath” was in a green algae laden river that induced a panic attack. It broke so many of my personal rules. Yet, there I stood in my unflattering one piece, water up to my knees (that’s as deep as I could go before my heart would stop). I stood as only an adult toddler could, rinsing my body and hair with a cup.
It’s been a month since my last post. We’ve been camping for 56 nights and have paid for 1 night of camping and 5 hotel stays. Our favorite app is I Overlander for free camping. Pretty sure there’s not an app for free hotel stays……..yet.
Saving money on rent during a pandemic has never been so much fun. Ask us how we feel about it once winter shows up.
We’ve done and seen some great things since the last post. The least great being Las Vegas, I have laid my curiosity to rest for all eternity. I prefer being smelled through the screen.
She’s quite a character. Notice in the video I was painting a cat.
I’ve had a sore throat for days and I feel like someone ran me over, put the truck in reverse and did a doughnut over my flattened body. Could be an Epstein Barr flare, the virus that keeps on giving. I certainly don’t need the coronavirus on top of EBV.
The day before yesterday, Jase and I took our daily hike with Cricket and it felt like I had cinderblocks strapped to my limbs.
I don’t feel intense body pain, so thankful for that. I spoke to my ketamine doctor over the phone. She said since I did so well, they would like to maintain my results with a once a month infusion after the coronavirus blows over.
On top of being hormonal, feeling physically ill is triggering some depressed feelings. I’m not worried about anything, but it’s pulled my “corona routine” out from under me. I currently feel numb. Flatlined.
I know I need to honor the fact my body needs rest. I also know my sanity needs routine and some sort of plan. No one is going to make a suitable plan but me. I must stick to what I know, regardless of how dead I currently feel.
#1 Make a blog post, it’s been 3 days since my last
#2 Shower. I get points for the fact I’ve changed my underwear and put on fresh jammies. It’s now time for the pits, tits and ass rinse. My hair (it tickles my ass crack when I pee) truly needs some attention. There’s a dreadlock forming that will require a half gallon of conditioner.
#3 Meditate and journal. I know that I know that I know these practices are essential to my mental health.
#4 Paint some rocks. My new addiction. This I have been doing daily for the past week. It brings me calm. My 2 oldest boys are camping in the backcountry. They put their painted rocks outside their tents. Well, if that doesn’t put a lump in my throat, freakin kids making me cry. I made them similar rocks so there would be no fighting. They are 25 and 23 hahah 🙂
#5 Get outside. Even if I don’t have the energy to walk, fresh air is the best vitamin for me.
#6 Stick to proper meal times. It doesn’t matter if all I can stomach is crackers and tea. Keep a schedule Mare.
#7 Speak up when your mind starts looping. I am a skilled magician when it comes to the disappearing act, folding within myself and glazing over like a zombie. Last time I checked, Jase is a skilled listener and generous with hugs and affection. His exact words “Use me baby!”
#8 Take a nap.
You get the idea. Basic self care.
Why is it always the first to go when I feel like shit?
All I know about yesterday is I didn’t get sick. There was no vomit. I listened to calm piano music this time as I felt the voices in the meditations yesterday really fucked with my head. Lesson learned.
Jase was nice enough to take videos of me pretending to be our cat Cricket, another of me talking about everything being mint chocolate chip marshmallows, my son Archie and I taking a ride and he said I asked about the kids every 30 seconds for an hour straight.
At one point Jase felt like hooking himself up to my I.V. just to deal with my excessive rambling about how much I loved everyone.
I slept the rest of the day. Today I feel very out of it. We are heading out for the 3rd treatment soon.
As far as helping with the pain, not a clue, I feel like a floating body.
I miss reading everyone’s blogs, hope all is well and thank you for reading and for your support. It means a lot.
Ketamine infusions begin today and go through Thursday.
8 am till noon.
Four hours, four days in a row.
I put together a 4 hour playlist of meditations on healing along with healing sounds.
I figure why not become a partner with the Ketamine. Welcome it into this vessel known as my body. Come on in and rewire my nervous system, please and thank you. I promise I’ve been meditating, focusing on my breath, and training my brain to work though the pain. Welcome to the party, Ketamine, do your thing!
I’ve been wide awake since 3:30 am. It’s now 5:30. I spent the last 2 hours laughing at old videos of the kids and Jase going all the way back to 2016. I was mostly pain free and a bundle of energy. The pain has been a silent phantom slowly making itself a member of the family.
Sipping on coffee and heavy whipping cream (yes, it is sin in a mug) I’m imagining waking up and moving through the day without a burning sensation in every muscle and joint. Without tingling and numbness through my body. Trying to remember what it feels like to move effortlessly.
I’m also hoping I can relax enough to poop before we have to leave. Shut up, everyone poops and we all feel better after a good one, and I certainly don’t need to drag a ketamine I.V. into the shitter along with a nurse making sure I can wipe my ass while in a psychedelic frame of mind………or god forbid fall off the toilet and crack my head on the toilet paper dispenser.
Anyhoo, I’ll try to post my experiences over the next few days. Hoping for embarrassment free infusions……..fingers crossed……
Jase lured me out of “the cave” at 5pm to do the above puzzle.
I spent Sunday in the cave with the blinds shut, leaving for brief moments to pee and feed on junk food. Yes, junk food. Sometimes a girl has to live on the edge. Considering, I feel the same regardless of what I eat, I do indulge from time to time: Cookies with coffee, 1/2 a cheese pizza, chips and dip, champagne, and the book “how to build a girl.”
All junk and all delightful. The book is absolute trash, but in a good way.
Oh, and Jase handed me a grilled pork chop sometime around noon and said I needed protein. Literally, handed me a pork chop.
No plate, no fork and knife. Just a napkin, and said eat.
The healthiest thing I did was read in Gabby Bernstein’s “Super Attractor” and did 2 meditations where I learned the name of my guardian angel is Emily.
Yes, Emily. It means “hard working and industrious”. Fuck yeah, you have to be to watch over my ass.
Last Sunday, I made the grave mistake of leaving the cave, which resulted in me cleaning the house and trying to walk on a trail. In other words, trying to be “normal”.
Both resulted in further fatigue and pain. I then began the work week at an unimpressive deficit of energy.
Not wanting to make the same mistake, I remained a cave dweller until the sun began to sink. If I stay in there with the blinds closed, I feel better about missing the day. It tricks my brain into believing it’s perpetually night.
We still have no answers as to why I’m falling apart. The doctors are working on ruling everything out.
This morning I set up a science lab in the bathroom. I shit in a paper hat and put my excrement into viles with popsicle sticks. It was both humiliating and disgusting. Off to the lab with my poo poo magoo to check for parasites.
I would visit those with chronic illness in the hopes of interrupting their pain with joy.
It would be my own form of “distraction therapy” tailored to fit the interests of each individual.
I would take my pain and fatigue to the streets. I would meet others and we could share a belly laugh until we cry and there’s snot everywhere. Why not take our snot, sprinkle it with glitter, and use it as paint. There’s a distraction…….
I’d ask each person to describe what their body feels like. What it feels like to be them in just a few sentences. It would be a book written by thousands.
My holiday gift came early this year. Way early. A week to be exact. I say holiday cause i’m not Christian, Jewish … or as you guessed it …not African American either. I’m white and pasty; mostly English with a dash of Irish. So i don’t celebrate Christmas, Hanukah or Kwanzaa. Okay, truth be told I might have a secret endearment to the jolly ole fatman who can shimmy down chimneys without burning his chubby ass. That fondess might exist still cause my 10 year old still believes in him.
Nonetheless, I am celebrating today. The reason…the beautiful love of my life got another lease on life. Ten scary days ago we received a brain MRI impression from a radiologist that said Mare….the owner of this blog, had angiopathic ischemic changes in her brain. Fuck….thats scary, right. What the “F” does angiopathic and ischemic mean even. I can tell you….it means blood vessels clogging, circulatory pathways dying. In other bodily systems it would mean a heart attack. If your a dude, it could mean you’re never getting a boner again cause you ate to many McDonalds cheeseburgers and ya can’t pour “Draino” down your Jean Thomas to unclog the block. For Mare, with this prognosis it could mean that she may have been dealing with a disease called small blood vessel disease of the brain.
In layman’s terms if your brain blood vessels are dying you could experience early onset Dementia, Stroke, balance issues, pissing yourself….you know all the great fucking things that come with being geriatric after age 80. The only goddamn problem is Mare is 44. That’s half the age you expect such fun caregiving experiences of epic humilating proportions.
Just to let our readers know….I don’t mind taking care of Mare. Saddling her up with Depends sexy diapers. Personally i’d get the form-fitting ones with the floral pattern and the smell of coconuts and Jasmine. Or maybe wiping her ass with sensitive skin huggies flushable wipe…i certainly strike the balance between form and function. I would never want a huggies wipe that doesn’t biodegrade and instead ends up in “Flippers” mouth 5,000 miles away in the north atlantic.
It’s just that….well….i’m not ready to lose my sexy little monkey to brain loss and forgetting who i am. I am her Silverback. Her gorilla. The one who adores her 24/7 365. I love our everyday life together. Our intimate evenings. Cooking, drinking rum and cokes with a side of muscle relaxors to help us melt into the couch while singing our own perverted lyrics to Disney cartoons , reading poetry and instruction manuals next to each other on the green velvet microfiber couch, blogging from our our slightly larger than twin mattress and at times professional wrestling in a kiddy pool filled with KY jelly.
The bottom line. We found out that Mare’s occluded cerebral blood vessels are few in number and small in magnitude. So that is my Christmas gift. Our Christmas gift. It could be the best one that never ended up wrapped in box and a bow placed by Santa under the Christmas Tree. Instead the gift is right here with me conveniently placed directly under the mistletoe.