O Dog! O Cat!

O Dog! O Cat!

Oh no! not that!
I beg implore
"Please eat no more
that book o'er there
no please don't tear"
the dog has torn
and I'm forlorn
the pages gone.
"My book! Doggone!"

O Dog! O Cat!
Oh no! not that!
Please not the butter
"Too late" I mutter
Cat's tongue has licked
my butter stick
"Well that's just perfect
You dairy Addict"
Now toast is out.
I'm sad. I pout.

Where I am Now with Lyme etc. - Aug 2021

Well, it's been a minute since my last post.  If you have seen it you know that April was rough for me.  Dark clouds had been gathering for a long time and in April the storm finally broke.  I had been putting one foot in front of the other for so long that I hadn't given myself time to grieve.  

When I finally had a doctor confirm to me that I would never really get rid of Lyme Disease, I'd only put it in remission... I didn't even cry.  I just said, "ok, cool."  I'd been trying so hard to stay strong that all my emotions were trapped inside me.  I hadn't been letting myself feel and cry and recover.  So, in April I broke and it was like the violent breaking of a storm.  It was a monstrous storm, it broke dams that flooded my heart with all the dark emotions I had been trying to suppress.  

And it was so healthy.  Even if it took a long time for the flood waters to fully recede.

I hadn't intended to keep all my emotions in for that long.  I was just trying to keep moving forward.  What's next?  Find a doctor.  What's next?  Take this.  What's next?  Document progress.  I didn't give myself time to feel.  

It wasn't pleasant that I broke in April, but it was necessary.  I needed to grieve for myself that I'm in pain and suffering.  I needed to grieve for myself that this is chronic.  I needed to cry and feel sorry for myself so that I could keep fighting.  I needed to find a reason to keep suffering and somehow hoping.  

And after four days of abject misery, I finally found the will to fight again.  And the funny thing is that it came with a few ways to beat back the darkness.  I found once again that writing was key to finding my way out of the pitch black.  

"Writing?"  you say, "you didn't write anything on here in that time."  Yes, it's all true.  I did something far madder.  I joined an Instagram challenge called May Musings with a tiny press called BookLeaf Publishing and wrote a poem every day for the month of May.  This is being collected into a book that will be published very soon.  

I wrote about chronic illness and hope.  I mused on sorrow and pain, hardship and strength.  And I slowly picked myself back up from the floor of grief and carried on.  

So, what have I been up and where am I now in my Lyme journey?

I stopped taking plaquenil and azithromycin because they were very hard on me and they weren't helping fast enough with Babesia to be worth the hardship.  They may have helped put my temperature regulation onto a better path.  But it's hard to tell.  I'm not as cold, but then it's summer and it's 100 degrees out.  

I continued with mepron until I was out and then started on doxycycline again.  I am having a few stomach troubles with it, but other than that, I feel much better than on plaquenil and azithro.  I'm still doing the injectible bicillin, which I think is helping with my neuro Lyme symptoms.  I'm also still doing a weekly ozone IV.

I'm currently giving LDN (or low dose naltrexone) a try to see if it can help with insomnia, immune boost, pain, or mood regulation.  Theoretically, it can help with all of those.  I would be happy if it helped with even one.  

I want to say I'm seeing improvements, but it's so hard to tell.  I do feel like my brain fog is getting better.  I have had a few instances in the last few weeks where I remembered things I needed to do without a list, like the old me would have.  I do feel less cold, but again, it could just be a summer thing.  I feel like I have a bit more energy, but still no stamina.  

I'm ten months into my journey with my current doctor.  (Doctor number 3).  I feel like the progress is coming but it's so very slow.  The next thing we are planning to do is to put me on Rifampin to tackle Bartonella.  I can't tell you why, but I firmly believe that Bartonella is the cause of my body pain.  I'm excited to start tackling that in a few days.

And bonus, Rifampin may cause my body fluids, including tears, to be red.  I can't wait to have red tears for Halloween.  It's the little things really. 

I'm so tired of Lyme, I'm so tired

I have been trying so hard to stay positive, to stay strong, to stay focused on treating Lyme so that I can get better.  But I'm so tired.  I feel like all I ever do is talk about Lyme and take pills, and try to mitigate symptoms.  I'm tired of living my life.  

I don't want to sleep because at night is when I'm usually in the least amount of pain, and the nights when I dream Lyme dreams, I don't really rest anyway.  I don't want to wake up because I don't want to take a million pills, starting with when I get out of bed and eat.  I don't want to eat because it makes me nauseous.  My pills make me nauseous and then I spend a large part of the day dashing into the bathroom.  The best moments of late are those that I can forget I'm alive, when I'm zoned out watching something that takes me away from here, or I'm unconscious.  

I am not suicidal at all, I just don't want to keep living this way.  I'm tired of being miserable.  I'm tired of taking pills.  I'm tired of feeling like I can't do anything around doctor visits and spending the day in the bathroom.  I'm tired of being unsupported.  I'm tired of feeling so fucking alone.  

I'm genuinely not living.  I'm barely surviving and I don't know how long I can do it.  

As if that's not enough I've also found out that my Cat has cancer.  So not only am I miserable, he soon will be and then I'll lose him.  How is one person supposed to survive all of this?  I feel very alone and hopeless just now.  

The Wind is a Warrior and so am I

Last night I met the wind, the herald of the storm and it was vibrant and alive.  

It roared up the face of the mountain and met me in the dark as I approached the mountaintop.  

It said, "I am here, I am alive, I am a warrior."

And I smiled because I knew that I was talking to a friend.

"I bring the fight to the world.  I don't back down" the wind said.

I laughed because that is the song in my heart as well.

I let the wind push my shoulders and tussle my hair.  I braced myself and pushed back into the wind and I told it "I too am a warrior, vibrant and alive.

Then I climbed on, though my legs were weary, and bearing the slow burden of the climb.  My body felt beaten down by all the fights we've been through, this mad battle to survive and thrive in this downtrodden world.  

As I climbed I picked up stones that tripped me, stones that seemed to be in my way.  To me, they were tangible symbols of the burdens of the world that I carry.  So, I carried them on my journey to the top of the mountain, the stone that was my weariness, the stone that was my fear, the stone that was my doubt.  

At the peak of the mountain I clambered up the highest rock pile and the wind roared around me, pushing me precariously.  I refused to back down.  The wind was strong, and this wind warrior roared in vibrant anger.  "Do you know what I've been through to get here?" it asked.  

"Yes," I said, "I have also walked the path of the warrior."

"It is long" said the wind.  

"It is hard" I said.  I raised my hands in triumph, "The road was long but look how far we've come," I laughed into the wind.  

The wind acknowledged this and it no longer threatened to throw me off my rock, but it roared with me at the world.  

"We are warriors.  We have survived much.  We are alive.  We are strong.  We are not going to back down.  We still have a long way to go, but look how far we've come."  

Then I found a perch near the top of the mountain where I could sit and reflect.  The wind told me its story.  It told me how much it has endured, all the pain and sorrow that has made it angry at times, weary at times.  

"I am a warrior and I have been wounded, sometimes my wounds still ache.  I have seen many troubling things but the world has not brought me low.  I sorrow for the things I've seen.  I rage that I cannot change them.  I roar that I will never give up fighting for what is good and right and real."  

I understood.  

"I see you wind, I hear you, you are witnessed," I said.

Then I walked to a more sheltered place to rest a moment and the wind whispered to me some of the secrets kept in its heart.  

"Sometimes when I am lonely I race to the top of the mountain to look down and see just how big and full the world is.  And then I realize that I have friends waiting to be met everywhere," said the wind quietly.

It whispered that it was friends with every bush who whispered back to it in the night and that I too was its friend in the darkness of the storm.  I touched a branch lovingly to say thank you for letting me hear the conversation between the leaves and the wind.  Not everything that needs to be said must be said aloud.  

"We are all warriors," I told the wind and the branches, "Some warriors go ever on in their journeys, like the restless and wandering wind.  Some warriors sit in a still and dry desert and decide, against all odds, to make flowers in the barren wilderness."

The wind gusted in agreement.   

"Anyone who refuses to give up is a warrior" I concluded.  

The bushes nodded in agreement.  The wind whispered that it had met many warriors on its journey tonight.

"Goodbye wind, goodbye friends, goodbye fellow warriors.  I must go home before it is too late and too cold and too dark for me to make the journey," I said.

The wind went on as well for it had to announce the coming of the storm.

Then I started the long journey home.  It did rain.  I did stumble.  And I will face many many more trials on my continuing journey through this life.  But I am a warrior.  I have known pain, and defeat.  I have known loss and sorrow.  But I have also known strength and courage.  I have known triumph and joy.  

Sometimes I am lonely but I am never alone.  Sometimes I am weary but I never give up on my journey.  Sometimes I stumble but I always get up.  Sometimes I am beset by enemies on every side and sometimes I am aided by countless friends.  Sometimes I fight desperate battles I'm sure I'll lose at devastating costs.  Sometimes nothing stands in my way.  Sometimes my heart is weary and my feet are sore and I long for rest, but I soldier on.  Through the darkness, through the mud, through the pain, through the disappointments.  I am a warrior, I carry on.  

I wrote this in January (actually on January 29th after I'd been hiking on a night of either a full moon or nearly full moon).  For some reason, I didn't publish it.  I found it again this week and I resonated with it so strongly.  I've been feeling very embattled and this raised my spirits.  So, I'm publishing it now and hoping that it will give me new resolution and strength to keep fighting and that it may do the same for you, for whatever fight you are currently battling.

Lyme Dreams: A Series #10 - Phantom of the Opera meets Batman Begins

This dream was super emotionally based but also had a few very vivid and distinct visuals.  

In the dream, I was super-deformed only in the face, very much "Phantom of the Opera" style.  And I was walking around doing my thing and wearing this perfectly all white and smooth porcelain mask. And then somehow people found out I was deformed and I decided they had to die because they knew.  So, I went all "Batman begins" and I emitted a poisonous gas from the inside of my mask to kill them all.

So, yeah, there was that.

Lyme Dreams: A Series #9 - What Politicians are Actually Good For

Some night while dreaming I had some sort of realization about politicians apparently.

In my dream, I think I was working for some charity and realizing that the volunteer pool was a mess and nobody knew how to organize anyone.  

I thought politicians know how to use people.  We should put them in charge of sorting volunteers at all charity organizations.  

That's the thought I woke up with.

So there you have it, something politicians could actually be useful for.  Don't get me wrong.  I think we could muddle along without them in this capacity and the world would be better off without any politicians at all.  I'm just trying to be pragmatic while I dream, you know? 

Lyme Dreams: A Series #8 - Jealousy in the House

This is a really cool cliff wall of rock up near Split Mountain in the desert

I had a dream where I was somehow in a relationship with a friend who I will call Bob:

So, somehow in the dream, I know that I'm in a relationship with Bob.  But I don't want to be because I'm actually in love with, oh let's call him Thornton (in real life Thornton is my actual boyfriend, just with a different name, of course).  Since Bob also knows that I'm in love with Thornton, he gets jealous.  It's only natural, we're in a relationship, Bob and I.  

So, apparently, it seems like a good idea to Bob to plan an elaborate thing to make me jealous.  We live in a proper house that has a dorm room style bunk bed situation in the bedroom.  I come home and walk into the bedroom to find Bob actively sleeping with some random girl.  He's trying to make aggressive eye contact with me because he's doing this to make me jealous.  

Apparently, I'm unflappable.  I just look down because it's awkward as all Hell, and I get whatever I needed from the room and turn around to leave.  I say "Well, I'll just, uh, leave you to it then."  I close the door softly behind me and walk away.  I'm not the least bit jealous.  Bob's plan fails.  But I feel super awkward about what I just witnessed.

Then I wake up.

I know that I'm not in an actual relationship with Bob, nor did I do anything, not even in the dream.  But I still felt horribly guilty that I'd gotten into a dream relationship with Bob.  I called my boyfriend, the real-life Thornton (of another name) and told him the whole strange dream.  He laughed uproariously.  He thought it was hilarious that I had dreamed I was in a relationship with Bob, he also thought it was exactly the sort of bizarre hijinks Bob would get up to out of jealousy (dialed up to ten for dream drama of course).  He thought it was super funny that I felt guilty for this dream relationship that I made up in my Lyme dreams.  After I finally stopped feeling guilty about it, I also thought it was funny.

Lyme Dreams: A Series #7 - London Funerals with Racists

June 7th, 2020 I had a rather intense dream about racism.  

Fog settling over the hills on Iron Mountain, photo by The Madder Hatter

In my dream, I was in London attending funerals. And I was being hunted down by genetically inbred racist militants.  These racist militants had already murdered half the people who were meant to have attended the funeral and had hacked the phones of the people at the funeral to find out what they were posting on social media to see if they were on the "correct" side and could be allowed live.  Oh, and you could tell who all the inbred racists were because they all had identical noses.  

 

The racist militants had found my posts about being upset about racism and they were coming to get me. They had posted about how I was wrong and needed to see the right way. We knew I didn't have much time and I needed to get out of the funeral without being seen.  I had to be smuggled out of the funeral by an extremely tall security guard who was rushing me out as surreptitiously as possible.  He was hauling me out even as I said "I'm not leaving without my mother".  I managed to get ahold of her hand as we barreled through the crowds and she managed to come with us just barely.  Then we got close to the exit of the building and realized we had to get me out without them seeing my face.  So I had to pretend that the security guard was my boyfriend and that I was really overwhelmed by the funeral and he was hiding me under his arm with my face hidden in his chest to get us away clean.

Then we were pretending everything was ok as we fast-walked to the car to escape. And suddenly it was my boyfriend and not the security guard. And we frolicked in the rain on the way to the car. Then we started fleeing the danger of the racists again. We hurried to this car to try to get away and even with all this intense urgency of fleeing for our lives, I noticed that the car we were getting into had these weird space-age doors that, in order to open, fold up and such.  Even worried for my life I stopped and judged the car.  "How is anyone supposed to know how to make that work?"  Then we were in the car, my boyfriend navigating us through convoluted roads while my mom drove.  We were trying to get to safety away from London and then to America where hopefully the inbred militants hadn't taken over and started hacking everyone's technology to find their targets.

Also, they were protesting against an old movie black and white movie with Arnold Schwarzenegger as the hulk and another old movie with a big-name actor that they claimed were going to be released and couldn't be allowed to be released because they were wrong politically.  This was all in a pamphlet that I was reading in the back seat of the car while my mom and boyfriend tried to race us to safety.  And I was like good luck stopping that. And the pamphlet said in terrible grammatically incorrect English that they had done some of the photo work for the movies and could stop them from being released. And I was hiding lying down in the back seat as I woke up thinking "let's see what kind of pull you really have." 

So, yeah, that was an intense dream that obviously came about in part because of all the talk of racism and politics and riots, etc. in the US.  Being that it was during the lockdown and much talk was of how to be an ally via social media, much of this dream makes a bit of sense.  Also, I'm fairly certain that I'd just recently watched London has Fallen.  So, the funerals and being chased were things my brain was contemplating along with all the racism and unrest.  The frolicking in the rain and the space car do not make much sense.  But there you have it.  

Lyme Dreams: A Series #6 - How Pale Am I?

This dream was from August 9th, 2020

I had a dream where I thought I was tan.  And I put my arm around someone and realized I was appallingly pale.  I was so pale that I thought to myself "I need to go put on sunscreen right now".  

(Note that in real life I am very pale.  I was also on antibiotics for Lyme Disease and therefore had a greater likelihood of burning.  It must have been a thing my brain was just thinking about sort of constantly in the summer months.)

My pallid nature has been a source of both amusement and consternation for me.  I am rather pale.  But I'm not so pale that I don't tan.  I have a propensity to burn but it will turn into a tan that gradually builds through the summer.  I'm just not willing to burn often enough to actually get tan according to the rest of the world.  I'm tan for me, and it allows me to not burn instantly and that's good enough for me.  I've had too many family members with skin cancer to be into tanning for someone else's satisfaction or for some superficial beauty reasons.  Besides, there is nothing worse than a burn so bad that it's impossible to wear clothes and move even the slightest bit without immense pain.  

So, I'm not the palest person on the planet, in actual fact.  But I also wear a fair amount of sunscreen and tend to be pale year-round (at least compared to those who are naturally darker and properly tan).  The times I mind this the most include 1. when I burn, and 2. when I attract bugs in the darkness.  

Yes, it's true, that in pale moonlight I'm so pale that I'm almost bioluminescent and that bugs are attracted to me as a light source.  I know that I run towards the melodramatic and hyperbole.  If I were you, I'd probably be discounting this whole thing as poetic exaggeration.  But bugs are actually attracted to me in the dark because of how pale my skin is, and that is the honest truth.   

It's a conundrum. I'm not actually that pale.  I do actually tan.  But I also attract bugs in the dark because I'm that pale.  I don't know how I manage to live such a superiorly ridiculous life.