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PEG-J Predicament

I'm an EDS patient, and I not-so-recently got the diagnosis of severe gastroparesis with no stomach function. I have been admitted to hospital and got a NJ Tiger tube and a PICC placed for parenteral & enteral nutrition (I also have intestinal dysmotility). My doctors are opting for PEG-J tube placement, but I just can't get over the idea of this going way too fast. Also, I am not doing very well with the enteral feeding, and my doctors are trying to decide between home long-term TPN or me becoming a long term patient.. :( For this reason I'm thinking of starting a blog to share all my experience of having EDS as a teenager! Should I, or should I not? #ChronicIllness #MyCondition #EhlersDanlosSyndrome #Gastroparesis #AskMe #Dysautonomia

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Sick of myself, in a good way ☀️

So, you see all the time in affirmations and social media posts about the power of positivity and so I’m gonna give it a shot.

I look in the mirror, and I say to myself:

“I love you, but I’m sick of your sh*t. I need us to get it together because I’m sick and tired of being sick and tired. You’re beautiful you’re a bad as$ and I know you want this too let’s do this!”

There’s so many projects that I wanted to get done, there’s so many negative attributes about myself that I want to change, and I’m not taking the steps to create these new habits. Why this is so detrimental for my mental health is because my mind is focused on changing, and my body is not taking the actions, and that resistance, quite frankly, is making me loathe my existence.

I think it’s really important to realize even though I may be having harsh feelings about myself that if I follow through on these goals that deserve my discipline, there will be a really fabulous outcome. Keeping in mind that if hating yourself and being nasty to yourself worked we’d all be thin and rich.

So today I grabbed my camera and my ukulele out of the closet and decided that in order to enrich my life through incorporating aspects of play, I need to actually do things that I enjoy.

All things considered I think, making this post is a really good start to moving in the direction of the person I deeply desire to be.

If anyone reads this, I hope you have a wonderful day ☀️#ADHD #MyCondition

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Happy November 🍂

Last night was a delightful change of pace, a bit of low key fun that I hadn't experienced in quite some time 🧡. This time last year, I was still fresh out of hospital around Halloween and not very able to participate, so this year felt especially liberating and enjoyable. There was a moment of slight panic when my husband mentioned AFTER I’d drawn it on that my cat nose wasn't quite working. But with a little effort, I think I managed to pull it off in the end!

One of my favorite Halloween traditions is creating little bags filled with a blend of treats and toys. I have a soft spot for the timid little kiddos who are reluctant to let go of their parents' hands and walk up to the door to claim their treat for their effort of dressing up. Kneeling to their height, I try to offer words of encouragement, in an attempt to ease their unease.

Then there's another group that tugs at my heartstrings: the children without costumes. Whether their parents handed them a mere grocery bag or it was their own last minute invention, I empathise deeply with these kids because I see myself in them—as I too was once one of them, the neglected child. So, when they return, hoping for more treats, I understand their actions are not driven by greed but that for many of them, Halloween may as well be Christmas. So I give them the second bag, hoping to add a little more joy to their night.

On reflection; I think the thing that makes Halloween great, is that it transcends the simple joys of dressing up and indulging in treats.

It's a chance for community interaction and connection. While some might criticise the commercial nature of these holidays, for my part, I hope I never view the world with such cynicism. Especially at Halloween, when we have the opportunity to spread kindness not just within our own families, but throughout our community.

After all—as us Mighties know far too well—the world can always do with more kindness 🫶

#WarmWishes #DistractMe #CheerMeOn #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #Endometriosis #MyCondition #PTSD #Loneliness
#Grief #Trauma #Anxiety #MightyMoment #MightyTogether

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A Poe-m For Halloween

Inspired by the haunting cadence of Edgar Allan Poe's "The Raven," this reinterpretation attempts to echo the very real struggles faced by our chronic illness community. In the bleak months to come, I wish for you, my fellow Mighties, that the coming year gifts you with many spoons, and that your inner light continues to prevail wherever darkness may lurk 🖤

Once upon a midnight dreary, while I pondered, weak and weary,
Over many a faint and symptom of forgotten health lore,
While I nodded, nearly napping, suddenly there came a tapping,
As of someone gently rapping, rapping at my chamber door.
"'Tis some visitor," I muttered, "tapping at my chamber door;
Only this, and nothing more."

Ah, distinctly I remember, it was in the weak December,
And each separate dying ember writhed ghost like upon the floor.
From my books surcease of sorrow — sorrow for my lost health's morrow,
For the rare and radiant treasure of the health I had before —
Nameless here forevermore.

And the silken, sad, uncertain rustling of each purple curtain
Thrilled me — filled me with harrowing terrors never felt before;
So that now, to still the beating of my heart, I stood repeating,
"'Tis some visitor entreating entrance at my chamber door;
Some spectral figure entreating entrance at my chamber door;
This it is, and nothing more."

Open here I flung the shutter, when, with many a flirt and flutter,
In there stepped a stately Raven, sent from Odin's vast halls of yore.
Not the least greeting made he; not an instant stopped or stayed he;
But, with the air of a lord or lady, perched above my chamber door —
Perched upon a bust of Hippocrates just above my chamber door —
Perched, and sat, and nothing more.

"Art thou Huginn or Muninn?" I inquired with voice thinning,
Seeking wisdom from the raven, as in ancient Norse lore.
“Though thy crest be shorn and shaven, thou,” I said, “art Odin's haven,
Ghostly grim and ancient Raven wandering from the Hellish shore —
Is there hope or respite on the cold and distant Hellish shore?”
Quoth the Raven “Nevermore.”

Then this ebony bird beguiling my sad fancy into smiling,
By the grave and stern decorum of the countenance it wore,
“Though thy crest be shorn and shaven, thou,” I said, “art no cowardly craven,
Ghastly grim and ancient Raven wandering from the health-filled shore —
Tell me what thy lordly name is on this Night’s Hellish shore!”
Quoth the Raven “Nevermore.”

Much I marvelled this ungainly fowl to hear discourse so plainly,
Though its answer little meaning — little relevancy bore;
For we cannot help agreeing that no living human being
Ever yet was blessed with seeing bird above his chamber door —
Bird or beast upon the sculptured bust above his chamber door,
With such a name as “Nevermore.”

But the Raven, sitting lonely on the pallid bust, spoke only
That one word, as if his soul in that one word he did outpour.
Nothing farther then he uttered — not a feather then he fluttered —
Till I scarcely more than muttered “Other friends have flown before —
On the morrow he will leave me, as my health has flown before.”
The bird responded, “Nevermore.”

#MightyPoets #DistractMe #ChronicFatigue #Spoonie #Fibromyalgia #MyalgicEncephalomyelitis #Endometriosis #HypothyroidismUnderactiveThyroidDisease #WarmWishes #Insomnia #Migraine #Grief #Lupus #LymeDisease #IrritableBowelSyndromeIBS #MightyTogether #MyCondition

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Casualties of Chronic Illness

Of course there are many things that chronic illness robs us of, but for me dignity is right up there—along with the toll it has taken on my indoor plants 🪴

#DistractMe #MakeMeLaugh #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #greenfriends #MyCondition #Meme #Fun

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What’s My Name Again?

The brain fog struggle is real! There are also those annoying moments when you find yourself describing what car keys do, but can’t actually recall the word ‘keys’ in the moment 🤪

#DistractMe #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #ChronicFatigueSyndrome #AdrenalInsufficiency #Lupus #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MyCondition #Headache #Migraine #Insomnia #SleepApnea

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