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Hi, my name is Justme69. I'm here because
#MightyTogether #ChronicLymeDisease #Migraine #Depression #MastCellActivationDisorder
all clinically diagnosed.
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Dying is a state of ongoing loss...
Sallie Tisdale once said, "Dying is a state of ongoing loss. Hair, teeth, erections. The ability to tie shoes or carry groceries. Breasts. Vision. Attention span. The evening walk. Driving. The strength to climb stairs, to do the laundry and housework. Bladder control, a sense of smell, balance. Relationships disappear, plans are revoked, social roles are extinguished."
I feel this quote in every facet of my being. I comes to me in seconds, minutes, hours of my days, weeks and months. Chronic illness is a state of ongoing loss. Chronic illness where death is the inevitable result is even more so. I think about this quote all the time and I just sigh. There is nothing to be done about it. Nothing left to do, but accept the L and keep moving forward until you stop or make it stop.
Dying is a state of ongoing loss. Chronic illness is a state of ongoing loss. Always in mourning with no end in sight.
#Lupus #SLE #chornickidneydisease #ChronicLymeDisease #hashimotos #Ending #theend
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I’m new here!
Hi, my name is KatyatheBlack. I'm here because of
#ChronicLymeDisease #fqad #ciprotoxicity #heavymetals #cirs #endometriosis #candida #costochondritis #epstein-Barr
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In a Blur
I finally had a couple days where I felt like I had some energy. But then a few days ago, exactly a year after I hurt my neck which started a terrible cascade of worsening symptoms, when I started to feel some relief of all the rehab and physical therapy, when I finally started to feel a bit like myself, I hurt my shoulder and neck again when accidentally I slipped while stretching. It feels potentially worse than a year ago. Its weak and painful and it even hurts to type and work on the computer, which is kind of necessary for my new idea of doing online tutoring, which is one of the things that was giving me some energy this past week. Im terrified of reliving this nightmare that wasn’t even close to being over before this most recent injury; its like I just restarted it. Doesn’t help that last night I had more nightmares involving my ex.
In a Blur
I’m in a blur.
As I stir, minds jumbled, a ringing whirs.
The pain in my neck and my shoulder it hurts.
I pray for a cure, for some hope to spur, to again feel pure.
But dark thoughts, they lure.
I fight the current, grit my teeth, growl 'gerr'.
Even in day the dreams of my allure for her reoccur.
Stuck in my head like a burr.
Please Sir, turn things back as they were, take away this hurt, you have the power.
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia
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Want to say good riddence but can't
What do you do when someone tells you over and over again that they will do anything for you, but when you finally muster the will to ask for help (only because you have no energy or ability to do a necessary task), they refuse or make it seem like such a burden? From my perspective im giving my parents an opportunity to help and feel like they are alleviating a tiny bit of my suffering, and show me that they truly care, and gain the slightest bit of trust back. But they just do opposite! I dont get why they cant just say okay and do one tiny super simple straightforward thing that is trivial for them but impossible and necessary for me. Even when they do try to help, they have to do it in their own way which is always counter to what i asked for. The more this happens, the more i realize this disgusting and emotionally abusive pattern has been going on my whole life. They are suffocating me and imprisoning me and will not even support me when I clearly communicate exactly what i need. I need to be free of them but i have nowhere to go and no options, besides moving into my tiny car and being homeless (again) which is just not possible in my physical (or financial) state. What do you do when the only people you have left are just repeatedly hurting you more despite you begging for help, but you cant just cut ties and say good riddance?
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia
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Vile Thoughts
Vile Thoughts
These vile thoughts reek
Mumbles I speak
Curses no bleeps
Head ringing beep
I am dead meat
Cowering so meek
Please hear this feat
Can’t stand on two feet
Stomped by a cleat
Poisoned with deet
Burning like peat
Shivers in heat
Head under deep
Breathing through reed
I’m up late can’t sleep
Stop this I plead
Whining I bleat
Still counting sheep
Don’t say a peep
Sneaking I creep
Secrets I keep
Mind’s chaos not neat
Thoughts quickly fleet
Struggle to read
Friends I don’t greet
Home in the street
Bathe in the creek
Hope someone sees
How broken in need
I am indeed
Future seems bleak
How to redeem
Must take a leap
Got to believe
Someone hears me
He answers with tears
Or is that fear
Murky not clear
Ringing in ears
Lyme it appears
Now scared of deer
They are so dear
But harbor tick’s spear
Stinger of drear
Vacuum of cheer
Silent can’t hear
Wasted career
Life’s in the rear
Swerved off I veered
No control can’t steer
Stuck in first gear
Going on years
Feeling so mere
Can’t take a jeer
Please don’t come near
Suspect of peers
And who’s in the mirror
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia
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Another Doctor
I wrote this poem a month ago after my first appointment with my lyme doctor. I just had my second appointment and basically feel the same way: though I’ve at least started treatment, being healed and feeling like myself again is still a world away, and I’m really struggling to keep my head above water while spinning my wheels.
Another Doctor
Another doctor today.
At least this one didn’t shoo me away.
Too much I had to pay, but at least she didn’t say it’s all okay and that I’m cray cray.
But I’m still stuck in the mud and its hardening to clay.
Thought I would see sunshine but it’s just darkness, no rays.
Awake I lay staring out at the grey.
Been sick for a year and a half come May, and so far it seems sick I will stay.
My doctor says nay, that I’ll get better one day.
But it’s a long way away ‘till once again I feel gay.
It's just the start of my foray and for now I’m still frayed and afraid.
Still falling apart, still unable to play, please let me get better I pray.
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness
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What Is a Hummingbird?
In celebration of FINALLY submitting my PHD thesis, and of seeing my first hummer of the year, I thought I would post my favorite and by far the most meaningful poem I’ve ever written. A brief backstory: A few days before my defense, the nerves and stress were starting to boil, compounded by my worsening physical condition. I knew I knew my stuff, but still I had lots of preparation for my defense to go. But that evening, instead of frantically rereading hundreds of papers and my thesis or tidying up my presentation, I sat down at my computer and just started writing. I don’t remember why or even having the idea of writing a poem about my research, it just happened. From the first few words I had tingles down my spine and tears welling up (even writing this now, those tingles and tears come back, as they do every time I read this poem). I didn’t even feel like I was really writing- the lines were just pouring out effortlessly. It literally felt like I was transcribing my spirit. The only difficult part was seeing my computer screen through my tears, and controlling my laughter, joy, and utter disbelief of what was coming out of my fingertips. I don’t have the energy to fully describe how truly important this poem is to me, but suffice it to say that whenever I have doubts or regrets about spending 8+ years in the prime of my life studying these magnificent and mysterious creatures, this poem reminds me that it was (and is) ALL worth it, and that there really is something more to this universe than what we can touch and see :).
What Is a Hummingbird?
“ What is a fish? ”, my labmate asked me.
“ Don’t know what you mean ”
“ Then what is a hummingbird? ”
I smiled with glee…
A hummingbird’s a bird, a hovering bird.
It zips in the trees, and flits with the bees.
From flowers it drinks, “ where’s my next meal ”, all it thinks.
Sweet nectar dew, plus an insect or two, but at night, can’t find food.
In the day, so mean and lean to impress all the ladies with sheen.
At night, hidden in the green, unseen, no longer a sugar fiend.
Its fuel source must turn, now fat, it must burn.
And when that is done, torpor’s begun.
Fast asleep? or something deeper? We won’t know without a seeker.
An observer of sorts, a scientist of creatures; and today his research features…
A few insights, some questions, and many honorable mentions,
The whens and the whys, the ins and the outs,
Of a magnificent feat from those without feet.
Still, she becomes, and begins to succumb,
To the cool dry air, one last dream of morning sun.
Her metabolism plumets, body temperature drops.
Her fat’s at a level where she will go plop!
IF, she stayed warm, but her threshold did warn:
“ Use torpor,” it said, “ or we will be dead! ”
So torpor she did and torpid she stayed, until just before that morning sun came,
And oh how much fat she did save!
Now I could end there, but that’s not quite all,
I could go for hours, so I hope you’re enthralled.
But believe it or not, it does get more interesting.
So if you’ll stick around, I’ll reveal you the mystery,
Of how hummingbirds do it, torpor that is,
It’s not that simple, there’s a lot people miss.
It’s not every night, like the routine theory says.
Only when needed- emergencies, instead.
If former were fact, they might be too fat,
For a particular season, like midsummer breeding.
That’s when they stay light, fighting for survival at night.
Agility, that brings them, territories and fiefdoms,
That hold the best nectars and nest sites near raptors.
What about nesting, and does torpor impair resting?
For sure the former, likely the latter, and the immune system might also stagger.
Brooding moms avoid it, developing juveniles too.
And, not to mention molting birds, slower feathers would renew.
That happens in winter, after the ruby-throated glinter,
Takes flight to the skies, over oceans it flies.
The Gulf, to be exact, but we’re not sure that’s fact.
To Mexico it goes, and even flying by coast, high fat stores it must boast.
And during that time, when fatness is prime,
Torpor becomes crucial, to save fuel it is useful.
And so a cycle it remains,
Summer, Fall, Winter, back north with Spring rains.
Body mass always changing, torpor always sparing,
that valuable fat, whether short-term or long faring.
But how does it switch?
Is it a flip and a ditch?
Or a dial with a seasonal style?
We’re not quite sure, the latter I suspect.
The flexible fat threshold hypothesis, we must test.
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #biology #hummingbirds #PhD
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Don’t Want to Get Out of Bed
It was so hard to get out of bed this morning…
I wrote this poem a month ago but today I woke up with it stuck in my head.
Don’t Want to Get Out of Bed
I don’t want to get out of bed.
My head is ringing and inside I feel dead.
I want to sleep and dream, to let my brain to mend.
But instead I lay here reeling from nightmares of my ex-girlfriend.
In pain I lay as I replay all my mistakes of the previous day, regretting everything that I said.
My life has turned upend, shriveled to shreds, filled with dread.
Will I get better? Don't think I would bet. Maybe, but not just yet.
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia
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Not Okay
Is it just me or does anyone else absolutely hate when people say "I hope you’re feeling better"? No I’m not feeling better! If I were you would know!
The worst is when my dad asks me nearly every morning "how are you feeling today?" in a nice cheery voice. In my head: “ ARE YOU BLIND? IM PRACTICALLY CRAWLING ACROSS THE FLOOR TO GET MY FIRST CUP OF TEA AT 2PM HOW DOES IT LOOK LIKE I’M FEELING!?! ” And somehow when I muster all of my energy to mutter "how does it look", I'm the bad guy.
I know they all mean well, and that my anger towards them is misplaced and inappropriate, but I cant help but being overcome with frustration, loneliness, and hopelessness when I hear things like that.
I wrote this poem a few weeks ago, but it’s very fitting for how I am feeling today.
Not Okay
I am trapped in my room like a prisoner.
I am in constant pain and it’s getting worse.
I am alone and cowering.
I am confused and lost.
I am overwhelmed utterly.
I am dying and I can’t heal.
I am begging for help.
I am wishing the hurt wasn’t real.
I am doing all I can but it isn’t enough.
I am not okay.
#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness
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