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Elizabeth March-Eberhart

@chronicallytakingover

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✨unapologetically honest about life with chronic illness✨
hEDS (countless comorbs)•Ostomate
Trying to do what’s right 🇵🇸🖤🏳️‍🌈
Soft place to land☁️

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When I was 23, my mom had a woman who had previously had an ostomy bag for 6 months (before they had it taken down) call me & try to stop me from getting a bag.

She shared she laid in a dark room for 6 months doing nothing, going nowhere because of the smells, the leaks, & her embarrassment.

Despite this phone call, for me, it was a matter of life & death & I didn’t get the choice to not have a bag. I hadn’t gone 💩 in almost 8 weeks by the time the bag was decided. & id been struggling with this since I was a little girl.

So, I moved forward with it.

& let me tell you, it was the best decision of my life healthwise! I dont think I ever really resented this little bag on my body because of what it gave me.

Sure, when I was dating, it’s a topic that I felt had to be brought up & can make one feel uncomfortable or even sometimes lead to rejection…

Sure, there are days where I wish my tummy wasn’t shaped a little lopsided now because my large intestine was taking out & my small intestine is sticking out of my tummy…

Sure, I wish I could lay flat on my belly sometimes

Sure, I wish I could afford the non expired supplies I need to function

BUT

I have never received such a gift in my health as this bag. Everything else healthwise has been defeat.

But, this bag & I figured it out together & I am so much better for it 💙

If you’re needing a soft place to land as you navigate your ostomy, I’m here ❤️‍🩹

I do this so I can make a difference for the people like me

Taylor did it for me & I will carry on her gift as long as I’m here & able 🌎 🖤

You are not alone

Your stoma is actually really cute 🥰

& your bag just helps you be a more healthy you, it doesn’t define you or change you!

#ostomate #worldostomyday #chronicillness #ehlersdanlossyndrome #softplacetoland by @chronicallytakingover

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7 days ago

You mean to tell me soothing rubs goes beyond just a comforting touch in my head?! @nlm_collections

#ehlersdanlossyndrome #chronicillness #family #handholding #naturalpainrelief by @chronicallytakingover

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12 days ago

IYKYK: finding a symptom tracking app that actually understands the assignment when you have hEDS, CCI, MCAS, POTS, etc is basically a sport of its own 🤦🏻‍♀️

I’ve tried so many apps that ask me to log “a headache” or “fatigue” and call it a day.

But how do you log a subluxation, a mast cell flare from a random temperature change, severe neuropathy, constant vomiting, pre-syncope, and neck instability all before lunch?

@human.health.app lets me customize everything and actually track the multi-system chaos. I’m really excited to hopefully watch things make more sense 💙🦓

#symptomtracker #chronicillness #ehlersdanlossyndrome #cranialcervicalinstability by @chronicallytakingover

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a day ago

My brain is desperate for entertainment & stimulation, but my body demands zero movement 🛋️⚡️

The reality of a high-pain flare day(s) is that you’re hurting too much to actually do anything, but the pain is too loud to just sit there in silence.

I am completely out of spoons at this point every single day but my old hobbies aren’t an option & watching tv (beyond my standard comfort shows I know well) feels too hard often.

I’m looking for some fresh, low-motor distraction ideas.

What are your go-to, bed-bound hobbies when you’re flaring and hurting, but bored out of your mind?

#chronicillness #ehlersdanlossyndrome #lowenergyhobbies #spoonielife by @chronicallytakingover

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2 days ago

Losing 30 lbs in 3 months when being unable to do anything due to illness

Vomiting daily for no known reason

My body is tired

#ehlersdanlossyndrome #cranialcervicalinstability #mcas #chronicillness #weightloss by @chronicallytakingover

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3 days ago

It’s novel experience for most for their lives to just suddenly stop

No warning

You body just can’t go on

It’s even more novel to look “fine” while this is happening

While your spine degenerates, while your neck stops holding your head, while your colon stops working, while your body stops holding itself together…

You look fine

I currently sit at home each day contemplating what my future holds

Wondering if I’ll ever finish those last two classes in my masters & get through my clinical hours so I can become an LCSW

Wondering if I’ll need that spinal fusion & what will happen preceding the fusion as it seems once the spinal fusions start on an hEDS body, they become a regular need until a lot (if not all) of your spine is fused…

Wondering if I will ever be able to be a mother to children I’ve waited for my whole life

There is just such a loss of control in life with chronic illness & that is impossibly difficult for anybody to handle

I’m still trying to figure it out ❤️‍🩹

#ehlersdanlossyndrome #cranialcervicalinstability #chronicillness #exhausted #scared by @chronicallytakingover

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4 days ago

I was genuinely shocked when I was younger to find that it’s most common to live at a baseline of NO pain & occasionally have painful days

You mean most people are not constantly feeling something painful in their bodies at all times?

No? Oh, okay…

#chronicillness #ehlersdanlossyndrome #ᴄʜʀᴏɴɪᴄᴘᴀɪɴ #exhausted #painscale by @chronicallytakingover

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4 days ago

#worldostomyday was only 2 days ago & it is SO painfully obvious why we need days like this

If you think an ostomy bag is a death sentence, you’re part of the problem

Your perpetuating rhetoric that ostomy bags are gross & it’s an option to get one for all

That’s not the case

Many don’t have an option & saying the things you say on people’s pages shocks me…

What do you want me to say back to that?

Oh yeah, you’re right, let me find a bridge & throw myself off it because I have a bag?!

Let me tell you that my ostomy bag is the least difficult & upsetting part of my health journey

I currently fight daily to keep any food down, to sleep at all, etc

My bag allowed me to continue to live, to continue to fight

There hasn’t been one day since I woke up from surgery at the age of 23 where I would go back to a body without a bag

Despite countless people out there saying shit like this I even leaving dates because they found out I had a bag

Even when covered in my own 💩 when I wake up!

I’m not sure how to make it more clear honestly & I just ask that people who believe they should kill themselves over having an ostomy bag…

Please GTFO!!

If you actually want to learn, support one another, & not suggest death as an alternative to a life saving procedure, then you’re welcome here

Seems like the bare minimum

#ableism #ostomyawareness #chronicillness #ehlersdanlossyndrome by @chronicallytakingover

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5 days ago

UPDATE: my bag saved my life & I’m so thankful for it even with 7 years of straight leaks!! Don’t get this confused with me wishing I didn’t live with a bag. My life was given back to me in this regard. I just want to make sure to be honest about the journey.

It’s wild what the memory can block out when you’re dealing with trauma.

Having a bag that leaked constantly for 7 years was something I just wrote about it my last video. But I forgot how hard it was until I came across this old video I made just now

I had leaks nightly

I had leaks during the day at work

I had to change my bag 2-3 times a day due to the explosive leaks & bring a change of clothes wherever I went

It was hard!!!

I’m of course, very thankful for my bag like I said 💛

But, I don’t want to accidentally rewrite the history with my Ileostomy due to my memory failing me

I rarely have leaks now when wearing the proper appliances all because a surgeon FINALLY listened to me & revised the completely botched surgery site that never healed properly…

I share this because I know there are new ostomates out there trying to figure out their pouching systems with no avail…

You will get it figured out! I am a plethora of knowledge when it comes to Ileostomies if you want any advice 💩

I promise you CAN do this! ❤️‍🩹

#ostomate #ehlersdanlossyndrome #chronicillness #botchedsurgery #softplacetoland by @chronicallytakingover

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6 days ago

I am all about advocating for hEDS, CCI, being an ostomate, etc , etc, etc . I want to help people through things especially because I have an extensive resume in chronic illness situations, procedures, surgeries, medications, etc. I’m happy I can do that.

But I really do wish this wasn’t my situation & I was able to live the life I planned.

Tonight, I’m angry

💙 🦓

#ehlersdanlossyndrome #cranialcervicalinstability #mcas #chronicillness #ostomate by @chronicallytakingover

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8 days ago

I’m doing this/sharing this so that people like me, who’ve felt insane while being desperately ill & not listened to, can have a soft place to land.

I know there are plenty of people on the couch, home alone, unable to even get themselves up to even go to the bathroom

I want you to know you’re not alone 💙

I want to build a commmunity who feels safe expressing wherever they are at that day & know it’s safe here ❤️‍🩹

I’m on the couch right beside you 🫶 🛋️

#ehlersdanlossyndrome #cranialcervicalinstability #mcas #pots #chronicillness by @chronicallytakingover

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8 days ago

I’m lucky I found someone who’s willing to put up with my constant shenanigans on top of my chronic illnesses! 😂🤓

Throwback to a couple days before we got married 💞

Happy one day after our anniversary to you @charlie_ebs 💍👰‍♀️🤵‍♂️💋

#throwback #bestfriend #3yearanniversary #ehlersdanlossyndrome #lizzymcalpine by @chronicallytakingover

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9 days ago