#Lyme disease things

[psalm40speakstome]

Never was underrrated for me because my chronically ill self could have wept all the good tears the first time I saw this moment 😭😭😭😍

dousy appreciation week 2023 - day three: underrated moment

[gin-juice-tonic]

exotic birds? that box clearly says pigeons

[opens-up-4-nobody]

...

[timesthatneverwere]

Ah, shit. Shit shit shit tick on my arm tick on my arm and I think it's brokennnnn shiiit

[grumpyoldsnake]

So as of Friday’s report I have technically tested positive for Lyme disease.

And I do technically experience occasional shooting nerve pains, and very occasional unexplained joint pain that comes and goes, and occasional headaches with very faintly stiff neck when they’re of a tension sort.

But. Like.

Look.

I know how that list sounds. But at the same time I am looking at the prevalence of false positives for this test, and the mildness of my own symptoms, and I am thinking that this is probably not the problem??

Anyway. The effort to diagnose my twitches/jolts continues, without much luck and with some side-tracks. 😂

[gutsandeverything]

can we hear more about the tick jar (im not judging i used to have a jar of moths before my mom made me throw it out)

just a jar that acts as a torture chamber for ticks i find on myself...... because sometimes you live in the forest and you have two dogs that you walk every day for hours and your dogs have all this expensive medication to prevent the ticks from biting them but you only have your pants and your leg hair. and maybe the first ten ticks you take off yourself will be disposed of properly (by burning) but then you get too lazy to do that because there's at least four of them everyday. so you suffocate them in the jar. because you have a cruel soul that feeds off others' suffering.....

[buggbuzz]

starting a little diagram journal about the changes in my joint pain throughout my experience with lyme disease.

it began to affect me sunday night, and today, tuesday 9/10, marks my first day on antibiotics! the worst of it should be over soon, and i should be out of the woods completely in 45 days. 👍

[goatpaste]

🐣 Sableye!

lil phreakin thangy

[xxmolls]

Lately, after hearing about the passing of a woman with Alzheimer’s whom I cared deeply for, I have been thinking a lot about death.

I went through a phase when I was 10 years old where I would lie awake at night, ruminating on the indisputable fact that everyone I love will one day die.

It used to terrify me.

Just the concept that one day they’d be in my life, and the next I would never see them again.

My Southern Baptist paternal grandparents had tried early on to teach me about Heaven and Hell. To get me to believe in Jesus so I could go to Heaven.

Despite their best efforts, I never did believe in an afterlife.

I have always just known, deep down in my gut, that I believe there is nothing after death.

When I was 10 and scared of the concept of death, I would eventually go to wake my parents in their room.

My mom would come lay with me in my little bed, rubbing my back and whispering in the darkness about death.

She does not believe in an afterlife either.

“Aren’t you scared to die?” I’d ask her, my knuckles turning white as I held onto her pajama top.

“No,” she said. ��You get to a point when you’re older where you just accept it. It is a fact of life. There’s nothing you can do about it. And after you’re dead you won’t even know you’re dead or hurt or be scared… you’ll just be gone.” “But what about people you love dying? If there’s no Heaven, then we will never see each other again.” My mom didn’t falter, her voice steady and clear.

“You know, when I was your age, I was scared of death too. And I would go get my dad at night when I couldn’t sleep. He didn’t believe in an afterlife either. You know what he told me he believes happens when we die?” She didn’t need a response before she continued.

“He told me we live on through people’s memories of us. That is how you keep the people you love alive… through telling stories about them and remembering them.”

(continued under the cut)

*

My maternal grandfather had a brilliant mind. He skipped two grades in elementary school, went to Princeton, got a PhD in clinical psychology, and was a bit of a snob about his intellectual interests and hobbies.

He and my mom were incredibly close when she was younger. But after going through a divorce from my grandma when my mom was 12, and after tensions between his new wife and my mother for the rest of his life, their relationship was rocky at times.

He seemed to relish a fresh slate with her daughter. His first granddaughter.

From the beginning of my life, I knew I was absolutely adored and cherished by my grandfather.

My cousins and sister still casually point out how I was his favorite, and he made it no secret.

From my earliest memories, he would visit and take me to classical music concerts and art museums. He would gift me cassette tapes of Bach and Chopin, and I would listen to them to fall asleep.

He frequently told me how I needed to go to Princeton for college, like him. When I spoke softly to him, he insisted I take speech classes to be able to speak clearly and “be a strong woman who advocates for herself.” When we would go to the same local restaurant on his visits, he’d always order a margarita.

When I wanted one too and was upset that he refused, he promised me that after I turned 21 and graduated college (hopefully Princeton), we would have margaritas together.

He had many hopes and dreams for me.

One of his earliest dreams for me was that he wanted me to play the piano.

He had a beautiful grand piano himself. From a young age I would sit on his lap as he played the Moonlight Sonata.

When I turned 5, he bought a used digital Yamaha piano for me and insisted my mom get me piano lessons.

For most of my life, I was told again and again how my grandfather “got me into music.”

Anytime I played the piano for him he would be glowing with pride. His joyful and proud expression echoes in my memories when I think of him.

* For all his brilliance and the good health he enjoyed for most of his life, my grandpa’s brain failed him.

In his early 70’s, he began to develop Alzheimer’s.

At first he was incredibly angry. He was used to being the smartest person in the room, and now he couldn’t even find the right words to finish a sentence. Now, people looked at him in pity and talked down to him.

I was a teenager and distressed by how I could see my beloved grandfather fading away.

And as I got older, I had a hard time remembering what he was like when he wasn’t sick.

My memories morphed from joy to the intense sadness I felt when I witnessed him falling while going up the stairs. He was sprawled on the ground helplessly with an expression of confusion on his face. He looked like a scared little boy. He could not pull himself up, and we had to call a neighbor for assistance in carrying him into the house.

As he aged, his memory failed him, and his body began to fail him as well.

He was a shell of the grandfather I knew. He completely lost his ability to speak by the time I went to college (not Princeton).

*

When I was 19, I got late stage neurological Lyme disease.

Along with other neurological symptoms like pseudo-seizures and brain fog, I also started to have memory problems.

I could not find my words and often had long pauses in my speech.

I forgot the name of a friend who had lived in my apartment building just a semester before.

I opened the cutlery drawer to find a can opener, when I was struck with the realization that I could not remember what a can opener looked like.

I woke up one day in complete terror when I realized that I had no idea who I was, or where I was. I kept willing my memory to rush back in, but it took a good 5 minutes of agony before I finally remembered my name and that I was home safe in my apartment.

Through it all, I would make time to visit my grandfather, who was clearly nearing the end of his life.

He could not remember words or names, and did not recognize most people, but when he would see me, his eyes would light up and he would grab my hand.

“My special girl,” he’d call me, shaking my hand with emphasis.

* Through my work as a caregiver in a memory unit of a nursing home in recent years, I saw a lot of things that scared me.

Aging and dying seemed so slow and painful to me.

I saw once vibrant and beloved adults become stripped of their personalities and memories. I saw them wasting away in a sterile, dehumanizing environment. I saw the pain they went through, and I saw the pain their family members went through as they gradually lost them.

One thing I noticed is that the residents who were happiest and most at peace were the ones who had loved ones visit them frequently, who had loved ones at their side holding their hand through their gradual passing.

I began to get nightmares of what would happen when my parents got older, and what would happen if I got to be that age.

In all of my worst nightmares, I wake up from my slumber in an unfamiliar nursing home, my memories completely gone, and I am alone.

* The last time I visited my grandfather was when I had just turned 21 years old.

I hadn’t graduated college yet (my Lyme made sure of that), and I was having a lot of physical health troubles from my illness. I was heavily medicated, and absolutely miserable.

We were out in his backyard garden on the patio, and my step-grandmother brought him a hot diet coke with a straw.

She offered me a soda too.

We both sat in silence as others around us chattered away. We were both struggling to find the right words. Both of our brains were betraying us.

“I’m sorry we couldn’t get our margaritas,” I told him softly. He grabbed my hand and squeezed.

As I left his house that day, I looked back to capture him in my memories. I knew it would probably be the last time I saw him.

He was old and frail. He looked so lost. I was not sure I wanted this to be the image I had of him in my mind.

But his whole face lit up as he waved and said again,

“My special girl.”

*

When it became time for him to go, I was completely bedridden at my parents’ home in Missouri.

I was in horrible pain and in constant motion.

I could hardly tell the difference between my tics and my pseudoseizures. They both made it completely impossible for me to walk, talk, feed myself, and even bathe myself.

Around that time I was taking over 30 pills a day to try and mitigate my symptoms. I had not yet gotten diagnosed with Lyme Disease.

My Tourette’s neurologist whom I had seen since I was 11 years old started crying at our appointment.

“I would do anything to help you,” he said, “but I think the only option we have left is experimental brain surgery.”

I became incontinent. My doctors prescribed me sleeping pills just to “give my body a break.”

Still, I always hoped that when my grandpa passed, I’d be beside him holding his hand.

But when the time came, I couldn’t get on a plane to see him much less get out of bed to go to the bathroom.

My mom and sister went on their own to say goodbye. They played him his favorite classical music, and they held his hand and talked to him in low voices of how much they loved him.

The next morning, he was gone.

* I have never believed in an afterlife, and I have never believed in anything supernatural.

The night my grandpa died, I was loaded up on sleeping pills and mercifully unconscious.

Around 3 am, I woke up abruptly.

All around me I could smell my grandfather. It smelled like he did when he hugged me, when he took me in his arms to sit on his lap and play the piano together. It smelled of comfort and love.

I was still woozy from the sleeping pills, but I swear I could sense his presence.

I got the sense that he was waiting for something.

With sudden clarity, I smiled and spoke out loud “I’ll be okay. You don’t have to worry about me. I’m going to be okay.”

The smell then intensified, and wrapped around me. I could sense it everywhere. I could sense him everywhere. And then it was gone. I still wonder if it was truly there. That is the only supernatural experience I have ever had. But still I hold onto it and believe it to be true.

*

The next day I wrote this song for him, if only to keep him alive a moment more.

Lyrics:

Holding Hands

We passed away our money We spent up all our time If my love for you is silver my heart's a silver mine

I hold your hand and swallow I don't have enough words 'Cause our life together is dying As the pain in you grows worse

Would you say "I love you"? So I could memorize your voice Would you stay with me forever If you even had the choice?

The grass outside the window Looks healthier than you If I call this our last winter Would you tell me that's untrue

This is the last moment This is your final breath I sit beside you holding hands Hours past your death

Would you say "I love you"? So I could memorize your voice Would you stay with me forever If you even had the choice?

All around our house things seem as they were before but I can't help but tremble every time I shut a door

I think you're here beside me I can feel you touch my hair Would you follow me less softly So I always know you’re there

Would you say "I love you"? So I could memorize your voice Would you stay with me forever If you even had the choice?

You will follow me And I will follow you And even in the darkness We'll see how our love grew And even in the darkness I'll be holding hands with you

[rat-hand]

The modern day equivalent of vampirism is tick born ilness.

For example: some little bastard tried to drain you dry so now you’ve got light sensitivity and doctors don’t believe your condition is real.

[quicktimeeventfull]

anyway if u see a target rash u should like. do something about that. even if you are such a shut-in the concept seems ludicrous

[genericminecraftpotato]

I love going to the bathroom in the middle of the night and there’s a deer tick in the sink. what are you doing there little buddy, you’re not supposed to be here

[ban-joey]

sending laser beams to my professor with my mind. kenneth you said midterm grades would b up by this afternoon. it is officially TONIGHT and guess what? kenneth i would love to not be clenching my teeth in my sleep tonight. kenneth i will be sending you a bill in the mail. yes i know its probably a TAs responsibility but i blame you personally. i hate school

[psalm40speakstome]

Me: incredibly weary, doing the bare minimum required to keep this conversation in social norms, looking at them with my dead trauma eyes.

Them: ‘well you look good.”

[moonygryffin]

I CAN FINALLY WRITE AGAIN FUCK YOU LYME ITS BEEN MONTHS

[transexualizeyourself]

I’m not a hypochondriac until I get a bug bite and then I’m like oh fuck what if I get Lyme disease