@laurenrecovers I don’t know how to live without you 😭 💔 #suicideprevention #autism #actuallyautistic #anxiety #ocd #inpatient #mitochondrialdisease #gonetoosoon #ptsd #cptsd #mybestfriend #mydaughter #mentalhealth

#MELAS #mitochondrialdisease 💜

Ewww it’s strange hearing your own voice #chronicillness #gastroparesis #intestinalfailure #gibleed #dvt #mitochondrialdisease #cpeo #mcas #pots #cvid #centralline #gjtube #tpn #hospital #fyp

Let’s talk OCD #fyp #ocd #anxiety #actuallyautistic #autism #mum #autismmum #mentalhealth #inpatient #daughter #mitochondrialdisease #infantloss #cptsd #ptsdwarrior

Discovering that goldfish drain>>> #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #mcas #pots #cvid #centralline #gjtube #tpn #hospital #fyp

I’m too nauseous to be creative with the caption #chronicillness #gastroparesis #ncs #smas #mitochondrialdisease #intestinalfailure #mcas #pots #fyp #foryou #FlexEveryAngle

I can make way too many of these #chronicillness #gastroparesis #intestinalfailure #smas #mals #ncs #vascularcompressionsyndromes #mitochondrialdisease #cpeo #pots #mcas #cvid #celiac #hospital #centralline #tpn #gjtube #surgery #fyp #greenscreen

Jonathan quite literally dragged me here #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #mcas #pots #cvid #hospital #fyp

And that’s the exact reason why I cover my medical devices in public #gastroparesis #smas #ncs #intestinalfailure #mitochondrialdisease #pots #mcas #cvid #hickman #gjtube #fyp #foryou #FlexEveryAngle

A draft from before my body tried to yeet me… again #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #mcas #cvid #vascularcompressions #hospital #centralline #tpn #fyp

Dr. EL HEALTH & FITNESS ZONE: A real health threat that leads to a host of serious health problems. #drel #gout #kidneystone #metabolicsyndrome #insulinresistance #fattyliver #mitochondrialdisease #prevention #foryourpagesssstiktok #fupg #fupシ

I thought I was doing really well these last few weeks but I’m pretty sure I was in denial. I will make a formal health update soon 🤍 #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #cpeo #mcas #cvid #vascularcompression #mts #mals #ncs #smas ##pots #hickman #hospital #fyp

The amount of sleep I’ve gotten is probably in the negatives at this point #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #dvt #pots #cvid #mcas #hospital #centralline #tpn #gjtube #fyp

No comment #chronicillness #smas #ncs #vascularcompression #gastroparesis #intestinalfailure #mitochondrialdisease #pots #mcas #cvid #hickman #tpn #gjtube #surgery #fyp

I’m sick & tired of being sick & tired #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #vascularcompression #smas #mals #ncs #mts #mcas #pots #cvid #hickman #tpn #gjtube #hospital #fyp

A draft will have to suffice for today #chronicillness #gastroparesis #ncs #smas #intestinalfailure #mitochondrialdisease #pots #mcas #cvid #hickman #centralline #tpn #gjtube #fyp #StemDrop001

Things have been going okay from a medical trauma standpoint at least #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #gibleed #hickman #hospital #fyp

To learn more about how you can get involved please visit: www.EveryCure.org #rarediseaseday #leapyear #zebra #autoimmunedisease #patientadvocacy #everycure #artificalintelligence #AI #tiktokforgood #learnontiktok #monoclonalantibodies #invisibledisease #spoonie #castlemandisease #castlemansdisease #cancer #geneticdisease #mitochondrialdisease #myalgicencephalomyelitis #fibromyalgia #chronicfatigue #acidsphingomyelinasedeficiency #hypophosphatasia #mcas #autoimmuneencephalitis #fnd #functionlneurologicaldisorder #niemannpick #phenylketonuria #pompedisease #ureacycledisorders #fattyoxidation #scid #musculardystrophy

I hope she’s competitively running half marathons. I only got to the training part before my world was turned upside down #chronicillness #mitochondrialdisease #cpeo #gastroparesis #intestinalfailure #vascularcompression #mcas #cvid #pots #centralline #tpn #gjtube #hospital #fyp

And can’t forget the weighted heating pad #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #pots #cvid #mcas #dvt #centralline #gjtube #tpn #fyp #foryou #MickeyFriendsStayTrue #CVSPaperlessChallenge

I think this is my 6-7th study?? RIP 💀 #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #cpeo #smas #ncs #mals #mcas #cvid #pots #celiacdisease #centralline #tpn #gjtube #transplantevaluation #hospital #fyp

pov: you’re allowed to have sips/ice chips after weeks of npo & it’s discharge day!! #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #hospital #centralline #tpn #gjtube #fyp

In my feelings since today was supposed to be the day I had surgery to help my QOL. I really hope things workout in God’s timing #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #vascularcompression #fyp

The pamphlet they gave me that said “relearning to eat” made me bawl my eyes out… I mean but what didn’t honestly 🫠#chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #intestinaltransplant #hospital #tpn #fyp

I swear I saw heaven for a few seconds lmao #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #cpeo #vascularcompression #smas #mals #ncs #mts #mcas #pots #cvid #hospital #centralline #tpn #gjtube #fyp

Queen of downplaying everything #chronicillness #gastroparesis #smas #ncs #intestinalfailure #mitochondrialdisease #pots #mcas #hickman #tpn #gjtube #hospital #fyp #AEJeansSoundOn #WorldPrincessWeek

If I don’t text back, it’s rarely personal. Check on your friends & be kind to others #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #vascularcompression #mcas #pots #cvid #centralline #gjtube #tpn #hospital #fyp

Line placements suck but I’m one step closer to home!! #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #centralline #tpn #hospital #fyp

Discharge very soon!! 👏🏼 #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #vascularcompression #smas #mals #ncs #mts #mcas #pots #cvid #hospital #hickman #tpn #gjtube

And not to mention the paralyzing grief that I struggle with on a daily basis #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #smas #ncs #mals #mcas #cvid #pots #centralline #tpn #gjtube #fyp

TMI who?? #chronicillness #gastroparesis #intestinalfailure #vascularcompressions #mitochondrialdisease #mcas #pots #cvid #celiac #hickman #tpn #gjtube #fyp

The dreaded iron infusion day #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #pots #cvid #mcas #dvt #anemia #ironinfusion #centralline #tpn #gjtube #fyp #foryou #vlog

This was extremely hard to share but I wish I would’ve known these things 5 years ago #chronicillness #gastroparesis #intestinalfailure #smas #mals #ncs #vascularcompressionsyndromes #mitochondrialdisease #cpeo #pots #mcas #cvid #celiac #hospital #surgery #disability #centralline #tpn #gjtube #grief #healingtiktok #medicalptsd #fyp

My version of this trend (repost) #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #nurse #bodypositivity #fyp

And I forgot to mention the entire vascular access fiasco. I just want to go home & sleep in my own bed where I can actually feel safe #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #cpeo #vascularcompression #cvid #mcas #pots #sepsis #centralline #gjtube #hospital #fyp

I have also been worried about several of my friends who are facing impossible decisions & the end of any available treatment option, including surgery. I can watch myself struggle but it’s entirely different when I see it happening to others & there’s nothing you can do but be present. In the next few weeks, I’m going to take a mini vacation with family, spend more time with my friends & scratch things off the list of things I’ve been wanting & capable of doing. I cannot escape my body or ignore it, but I can have control over when to schedule my follow up appts, so I’m gonna do that to have a little reprieve from doctors. With nothing going to plan right now, it adds another layer of uncertainty that I want so badly to be distracted from. I’m in severe pain from May Thurner syndrome but it’s not life threatening like my line is, so it’s looking like I’ll have to focus solely on being listed & then doing May Thurner surgery if the appeal is accepted later down the road. Whatever the plan is going forward, I know I’ll give it everything I have but right now I’m trying to figure out how to rest my soul & embrace what I can before another hospitalization or surgery #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #mals #smas #ncs #mts #cvid #mcas #pots #transplant #centralline #totalparenteralnutrition #gjtube #fyp

And the other night it somehow disconnected from my central line & fed my bed for 6 hrs before I even noticed I was sleeping in a puddle. So I had to trash half the liquid gold 😭 #chronicillness #gastroparesis #intestinalfailure #mitochondrialdisease #anemia #irondeficiency #vascularcompressionsyndromes #pots #dysautonomia #pots #mcas #cvid #hospital #tpn #centralline #gjtube #fyp

Happy 14th birthday son. Despite what the doctors said you overcame every obstacle. God has shown his favor and healing hands over you. wishing you many more. I love you #mitochondrialdisease #cure4mito #faith #overcoming #happybirthday #virgo @ShaqDieselONeal he loves you....he says you are big like him lol #fypシ

Dad will be taught how to fix Quincy’s hair for the next daddy daughter day…🤣🤪💕 #motherhood #medicalmama #mitochondrialdisease #leighsyndrome #trach #anticipatorygrief #siblings #ivf #homeimprovement