marisa 💜
@lcwithme
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22. Dancer & Artist. #LongCovid since Jan 2022
Joined April 2023
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Last Seen Profiles
Pinned Tweet
My
#LongCovid
billboard is now up & running!!😆 So proud of myself! It’s located in Santa Clara, CA on highway 101 & is on east bound traffic (left side of road) for anyone who’s nearby & wants to see it. So far it has over 17k impressions🙏 1/
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I live in an extremely toxic household where my parents think that I am choosing to live like this or be sick with severe
#LongCovid
. I have dealt with it long enough & am almost at my breaking point. They believe I can just push through my symptoms & that I’m making excuses. 1/
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So this happened today🙃 First time in an ambulance…I was sitting down about to nap when I started feeling very lethargic & having tremors. It wasn’t the usual poisoned feeling I have but I didn’t think much. Then I had a really bad dry cough like I couldn’t catch my breath. 1/
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This is
#LongCovid
for you & it’s definitely real. Shoutout to the funny ass paramedic who made me laugh & asked me what my fav genre of music is😭🙏
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I am struggling to type this & can barely speak because I didn’t recover from my crash last Friday. My parents don’t think it’s this possible to be this severe and are trying to force me to speak or see a psychiatrist. Or send me to the ER. Really scared right now
#MECFS
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Note: I also have tested positive for micro-clots. I clearly have tachycardia & cardiac issues but my parents think it’s just ✨anxiety✨ Thinking of telling my cardiologist abt this to possibly do an ultra sound or further testing as I don’t think this should be ignored. 3/
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How is this real life? Never did I think a virus could fully disable me the way it did & cause constant suffering. I’m 22 yrs old I’m supposed to be living my life. There really is no urgency to help us. It’s inhumane
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The doctors at Stanford don’t understand PEM, crashing, & how long it can last. They said “do a little more everyday” & are even trying to have me do mini exercises like lifting my legs in bed multiple times. Lmfao what a fucking joke
#LongCovid
#MECFS
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Then palpitations… I read my pulse & it measured 174 bpm. Immediately after I started losing consciousness, shortness of breath, sharp pains in my chest. I called 911 immediately. They ran a CT which came back normal but did say I have 3 pulmonary nodules & to do another soon 2/
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Facing the hard reality that I may never have kids, fall in love again, get married, be able to walk again & not be bedbound is unbelievably heart wrenching. I still have hope but I also am very much realistic that these are the cards I’m dealt.
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I feel like a lot of this also stems from my parents being in denial about my sickness. They just don’t think it’s possible to be bedridden from LC or ME/CFS. Please let me know suggestions down below as to how I can receive further support. ❤️🩹 Anything helps!
#LongCovid
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Pushing through my symptoms makes me feel worse as I also have
ME/CFS. They know of other people with
#LongCovid
who have gotten better overtime or are mild/moderate. My parents believe that everyone with LC gets better overtime but with me that’s obviously not been the case. 2/
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OR
“Other people with terminal cancer don’t even act like this.”
Are just some of the many hurtful things they’ve said to me. I have reached out to family members & am waiting on their reply at the moment. I also have a therapist that I talk to time & time about this. 4/
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I’ve had LC for almost 2 years now & have gotten worse. I am barely able to take care of myself & been verbally abused by my parents saying things like…
“God made you this way. You’re sick because you’re a bad person.”
OR
“You need the care & attention of a 2 year old.” 3/
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My dad took this pic! I plan to see the billboard in person this week & put up even more throughout the Bay Area this year :) Trying my best to advocate & spread awareness while still bedbound. 2/
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Update! The
@BerlinBuyers
billboard campaign is now finished :) Had over 69,000+ impressions & am excited to do another one in the Bay Area very soon🙏
#LongCovidAwareness
#LongCovid
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Most of the world still doesn’t know what
#LongCovid
is & many will never in my opinion.
Not even the hospital or paramedics knew when I told them about my condition.
The nurse said “Huh you have covid?”
The paramedics reacted similarly.
1/4🧵
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Anyone with
#LongCovid
get random fever/flu like symptoms or extreme hot flashes, muscle aches, sweating? It seems to never go away for me😞 Maybe an antiviral could help with this?
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🚨TW: Self Harm
I reflect on my life 1 year ago when I was mild/moderate with
#LongCovid
. Living in LA, in college taking classes part-time, still somewhat able to have some QOL with EXTREME difficulty. I think to myself how I would do anything to be only that sick again. /1
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My dad doesn’t think I have ME/CFS. He thinks it’s just LC. He’s tried to force me to speak & believes the ER can help me while I’m in a crash like state. Have an appointment with Dr. Bonilla at Stanford tomorrow and praying he can get my dad to understand.
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My parents have watched Unrest. According to them having severe ME isn’t possible with someone who has Long Covid. My dad also told me that he refuses to speak to ME/CFS leading specialist Dr. Kaufman because he’s a scam…in loss for words & feel so alone😔
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I still can’t believe my life changed at only 20. I became disabled & robbed off my life from a fucking virus. I actually hate my life & this barely living…it’s surviving with little to no QOL. I don’t know anyone impacted by covid to the severity I was🙃
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What I’ve been able to do recently that I thought I’ve NEVER be able to do again:
•Get a haircut + dye my hair
•Watch movies
•Wear actual clothes besides pjs
•Drive for 5 minutes
•Do my makeup & style my hair
•Game with my friends
•Tolerate more light + sound
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I just want to wake up one day and return to my previous healthy life and never look back. I can’t do this much longer it’s too painful😞
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Imagine being healthy enough to participate in this beautiful thing we call life. I really had no idea it could be this dark until my health was compromised. Kind of heartbroken🥹💔
#LongCovid
#MECFS
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Today is
#LongCovidAwarenessDay
.❤️🩹I’ve been missing from my life for over 2 years now…15 months housebound & currently bedridden. I was 20 when I got sick & my life was just starting. I still can’t sit up for long, walk, drive, & am dependent on others for care. We NEED answers!
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Does anyone living with long covid or a chronic illness feel like time is either moving extremely slow or very fast?
There’s no in between for me.
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What helped me go from very severe to severe/moderate:
#LongCovid
#MECFS
Methylene Blue
Mimio
Paxlovid Trial (14 days)
Ativan
Klonopin
Propranolol
Acetyl L Carnitine
NAD patches
High Dose Vitamin C IV Therapy
Atarax
Famotidine
HistaQuel
Pristiq
+ PACING & REST!
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I will never stop advocating & spreading awareness about the disease that changed my life.
Estimated 16 million Americans with
#LongCovid
& ZERO approved treatments. We need help NOW!!!
#NotRecovered
#LongCovidAwareness
Learn & more read stories here:
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It’s so difficult seeing people online I either grew up or went to school with living their absolute best lives while I am severely ill & bedridden. There’s truly so much loss that comes from this.
#LongCovid
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Never did I think in my 21 years of living that I would wake up and aspire to be able-bodied. It’s like a constant loop… i go to bed have dreams where I’m completely healthy and living life. Then wake up to face this harsh reality. Sometimes I wish I could just dream forever.
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What to do when the world has moved on without you &
#LongCovid
#MECFS
has broke your body: You simply exist. Give yourself grace & don’t give up on yourself even when the people around you may have.
I see you, I hear you, and I’m sorry for your suffering. We deserve better.
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I still cant get over the fact that most people are so unaffected by covid while the virus literally ruined by life & disabled me gmfu😤
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Today i turn 22…feels weird because I never got a chance to be 21🥲 I wonder if I’ll get my life back or be less disabled one day
#LongCovid
#MECFS
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He did apologize to me for what I’m going through but the lack of education on post viral illnesses & how the healthcare system continues to fail us is really so disappointing.
Note: Bring a packet that explains long covid & other diagnoses like
#mecfs
for future use. 4/4🧵
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“Being Healthy Became a Dream” —
I ended up writing this last night. This is what my life looks like with severe
#LongCovid
at 21 years old.
I understand this illness looks different for everyone. This was the best way for me to put it into words. 🦋
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Some things are truly worse than death. Having severe long covid & mecfs is one of them😓
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One of them asked “Your positive for covid right now?” I said no I have
#LongCovid
.
When I explained my symptoms they kept asking how long they last & how often I experience them. I told them the list & how I’ve had it for almost 2 years. They looked beyond confused.
2/4🧵
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People with severe/very severe
#LongCovid
can you walk & if so how many steps?
I haven’t been able to even walk & if so only a couple steps but even then my legs collapse & i fall. I can’t hold my body up & it feels like concrete in my legs…
#severeME
#pwME
#pwLC
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Wow I can really sit up on a chair with a headrest for 3+ hrs now. That wasn’t possible 6 months ago 🥹
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I miss feeling worthy of love, making memories with my siblings, watching them grow up & being able to participate in their life. I miss eating foods I love, late night drives, coffee runs, dancing whenever.
Most of all I miss my body not punishing me for living. WE NEED CHANGE
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🚨If anyone with
#LongCovid
or
#MECFS
can please take their time to read this I would so kindly appreciate it. I am having more & new constant symptoms than usual & it’s turning into a real nightmare.
Any advice helps 🙏💜
#pwME
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Like why I am 22 bedridden from a post viral illness that could’ve had treatments already by now. Just crazy to think I’ve never really experienced adulthood since I got sick at 20. We all deserve so much better🥲
#LongCovid
#MECFS
#NotRecovered
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One paramedic made commentary saying how he his family members got infected 2-3 times & recovered just fine talking about it to me like it didn’t disable me lmao.
He said the only people he’s seen issues with covid are people who have pre-existing conditions & over 80.
3/4🧵
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@emilyesfraser
Thank you for sharing. I have encouraged some family members to watch Unrest but some of them simply refuse…just close minded I guess😞
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My body hurts but my heart hurts so much more💔
When i imagine what my life would look life if I wasn’t sick right now I see glimmer of me sitting in a recording studio working on music, laughing & living my best life…I hope to be that girl again one day🥺
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Why have hope when the QOL i long for NOW was once a time in my life where I already wanted to end it. I tell myself this is temporary. The only thing that keeps me going is having delusion that one day I’ll live a purposeful life again. /end
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I’d do anything to be mild/moderate again😭 to socialize & do normal things with lots of rest after. Crazy to think i thought those days were bad lol boy was it just the beginning🥴
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I always try to remind myself I may be one experimental treatment away from improving my baseline…I don’t care how delulu that is☺️
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I’m too young to die but I’m too sick & suffer. Life is so fucking unfair💔
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Really hope they find something that gives us QOL in the next 5 years…I really can’t do this 4ever💔
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Boxing used to be one my favorite fitness classes to take before getting
#LongCovid
. I miss this version of myself…
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What’s the point in living with this QOL? This is merely existing…Like am I supposed to be bedridden or just housebound the rest of my life & just accept it?? I think the fuck not lol.
If there isn’t any treatment in 2024-2025 that helps then peace out✌🏻
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Any articles that show how GET is harmful for long covid & mecfs patients?
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Thank you
@WesElyMD
for your devoted & validating message to the people of the
#LongCovid
community.🥲🙏 I am hanging in there & am grateful for your dedication to lessen suffering & instill hope in others.
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Being severely ill with a very low quality of life really robs you from so many experiences…I used to get sooo excited about spooky season & making plans for my birthday which is near Halloween. Now I can only wish to live that again🥹
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Watching your own life slip away at the blink of an eye & not getting a chance to say goodbye to it is undoubtedly one of the hardest things that people like me will ever experience…💔
#LongCovid
#MECFS
#NotRecovered
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@kenCovidSingapo
Thanks for your kind words Kenneth. This is very similar to my situation as my dad does the same thing.😔 I’ve also always had a very active life prior to getting ill.
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I’ve been feeling absolutely awful lately again…I feel concussed, a blow to the head, feel numbness in face/legs/body specifically the left side only. Wtf is going on, I feel like my body is exploding😭 Possible autonomic dysfunction?
#LongCovid
#MECFS
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Tested positive for SIBO again today. I heard that certain antibiotics & probiotics may be harmful to people with
#MECFS
or
#LongCovid
. If anyone has any tips or advice I should know please let me know. I’ll most likely be prescribed Rifaximin.
@chydorina
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I had low grade fevers quite frequently, PEM, facial paralysis & was struggling with the loss of my previous healthy life even thought I was still able to have some QOL. I remember one day in particular where I couldn’t hold it together anymore. /2
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I truly believe PEM can be solved or that a medication/treatment can be made that subsides it.
#LongCovid
#MECFS
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@LindseyMarie_xo
Having a lot of cardiac issues…resting hr ranges from 110-145bpm just sitting. Also having paralysis in legs, numbness in face, neuropathic fully body pain + more. They’ve been giving me Atarax that’s been helping
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Meds + supplements that’s been helping me slowly increase my baseline:
#LongCovid
#MECFS
Ativan
Klonopin
Mimio
Methylene Blue
Atarax
Acetyl l carnitine
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Anyone who has crashes experience full body pain from head to toe almost like a tingling and burning sensation literally everywhere? Anything I can take for it?
#LongCovid
#pwME
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For me the only way to keep going is to believe I will get better even if that’s a delusional belief because without that there’s no point in continuing to suffer in silence. I like to believe there’s another version of me out there living my best life & that keeps me sane.
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Can you sue a doctor for medical malpractice or giving harmful/wrong advice?
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I miss living life so much. This was me months before having
#LongCovid
. My friends were laughing & taking pics of me for ordering myself a side of corn as my dinner in LA😂
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I am constantly haunted by own nightmares & dreams of me being sick even if I recover back to mild/moderate again. I think to myself what’s the fucking point anymore??
It is so devastating that this is the reality people with ME & LC often face /6
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I’ve been able to do short 5-10 mins drives recently & didn’t realize I drove for 25 mins today. I’m still shook lmao
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I ended up flushing pills down the toilet in attempt to stop myself. Now I wish I had ended it that night so I wouldn’t know what it was like to experience this type of extreme suffering & depths of hell. I feel that my life is completely over…/5
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I’ve always been a spiritual person & very in tune with myself. Manifesting & thinking about my future was something I often practiced however one day when I envisioned my future all i could see was we empty black darkness. It was almost like a sign that the worst was to come. /3
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I had an awful gut feeling that my health/life was only going to deteriorate from that moment on & those thoughts quickly escalated into me having a full blown panic attack. I remember wanting to end my life that night & planning on OD. It was all too much /4
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Remembering how good my life was before I got sick & the person I used to be is so heartbreaking. I would wake up & say today is going to be an amazing day & a lot of the time it was. Now that person is just a memory in my existence. I miss her more than anything💔
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The way I’m missing out on so much life & imagine what my life could’ve been with me thriving in a healthy body just fucking hurts. There’s so much I want to do but simply can’t💔
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One year ago today.🥲 I was mild/moderate with
#LongCovid
& had no diagnosis yet. How I wish to experience this amount of peace & have a self care day again🙏
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@Ramyisback
My dad has told me the exact same thing…I said “Do you hear yourself right now?” Just crazy🤦🏻♀️
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Been trying to stay positive as I’ve experienced small improvements but idek anymore…cause this ain’t it. I want some REAL QOL at least🥲 Life shouldn’t be this way…left behind to just rot. So many ppl robbed of their livelihood. No urgency at all to help us…feels unreal 💔
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Lol seriously😩 I actually want to have my body be studied whenever I die for
#LongCovid
&
#MECFS
purposes only. I have a feeling I’m going to pass young😅
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Honestly if I didn’t trial Paxlovid & get temporarily relief from my symptoms (the best I’ve felt in 2 years)…I probably wouldn’t have any hope at all🤷🏻♀️
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The fact that this type of suffering is possible is fu*cking insane to me🫠 No idea how much longer I do this…
#severeME
#LongCovid
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Going through my IG archived highlights since 2018 has rlly put me into perspective how active of a life I was living & how healthy I was.
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To remember how excited I would be for Fridays & the weekends…eating out at restaurants, spending quality time with friends, going to concerts, clubbing VS. my newly disabled life with the constant torture of PEM is something I’ll never get used to😩
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I’d much rather be dead than severely disabled for years on end. This is just no way to live & it’s so intolerable. I am heart broken & cant believe this type of suffering has been going on for decades before. I am one of
#millionsmissing
. 2/8
I still can’t believe my life changed at only 20. I became disabled & robbed off my life from a fucking virus. I actually hate my life & this barely living…it’s surviving with little to no QOL. I don’t know anyone impacted by covid to the severity I was🙃
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Watching the world move on without you including the people you love is so hurtful
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Some pics I took while on my mobility scooter around my neighborhood🌼:
Update I can drive & be on my scooter for up to 30 mins🥹
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I still remember going to the ER for extreme tachycardia & SOB. We told the doctors I have long covid & they go “you have covid right now?”…like be so for real right now lol. They had no idea what it was🤦🏻♀️
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Correction: last sentence meaning I don’t anyone personally impacted by covid in the way I was!
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