What’s really sad is she is a trained opera singer and wanted to do that before the infection destroyed her lungs and throat, which also resulted in her trademark high pitched voice. Once in a while she’s healthy enough to sing and her voice is jaw dropping
One more thing belonging to the real sad category is that she said to Connor she knew someone who was getting plasma daily and that this person is not around anymore. You can actually see the brick wall hitting Connor afterwards as he realises that someday he may call her only to find a void left by her moving to the better place, as many tend to call it
And when she does sing she performs to an audience of thousands of people. That's the silver lining here. If you look at her viewer count while she's singing and look up real world venues that can hold that number of people she's filling out some big venues, every single time!
In the last few days Ironmouse succeed walking in the treadmill for 5 minutes and has, also, a stomach condition that make eats almost nothing, but she has improved a lot in the last year also thanks to access to better treatments. She's our gremolin warrior. Much love for Mousey.
@@Penultimeat I don't think that would be the main cause of her not being able to eat almost nothing. My sister has no gallbladder and can still eat normally.
@@JolieBean6972 the antibodies she takes to fight off infections also kill of a lot of the necessary bacteria u need for digestion and other activities IIRC. that plus the lack of gall bladder is probably the reason her digestion is effected so much.
Brooke Goldner healed her lupus in 3 months with raw cruciferous vegetables and also have patiens that have healed many chronic diseases with her good bye lupus protocol she is on youtube and also carnivore diet have helped many heal chronic diseases aswell.
She did an interview with The Immune Deficiency Foundation. From what I gather she wasn't diagnosed with CVID till her late teens or early adulthood. She was inexplicably sick as a child, her condition then improved on it's own entering her teens, but then it drastically worsened and only after then was she diagnosed.
I think I remember her saying she got diagnosed in college when she was unable to attend classes at one point and got to see a doctor who knew what her condition is, and then started to get the right treatments. But I've only seen one clip about that.
Brooke Goldner healed her lupus in 3 months with raw cruciferous vegetables and also have patiens that have healed many chronic diseases with her good bye lupus protocol she is on youtube and also carnivore diet have helped many heal chronic diseases aswell.
@blax100dk please no. Why would you make this comment about CVID. It's not even close. Nice if it even made a difference in people who suffered from lupus.
There's a clip you missed which also explains her using a walker. Basically, she was bed-ridden for a long time (it why she started vtubing), and she has some atrophy in her legs. She has recently gotten a treadmill and is trying to get back some of her walking ability.
I forget the clip, but I think she said that the atrophy had gotten to the point where she couldn't lift her head off of her pillow. It's a detail that's stuck in my brain.
@@Tony_AM009 In her earliest streaming days, she did her entire stream laying on her back and could only stream for a very short time, I want to say maybe an hour at most. Considering she does 12+ hour streams fairly regularly now, there's been much improvement.
@@Tony_AM009 Yikes. That's horrifying. I've had a hip infection before where I couldn't even sit up straight without severe pain (I needed pillows to be put behind me to support my back so I wasn't in such pain when sitting), but for her to have not been able to even lift her head due to atrophy is heartbreaking.
@@Infact77 Indeed. All the more reason to regard the strides she's made over the years to better her physical health as best as she's capable of doing as praise-worthy.
Little side-story. Connor, AKA CDawgVA, has done multiple cyclethons across Japan raising money for IDF alongside another UA-camr, Chris Broad (Abroad in Japan). In their last cyclethon, they raised over $1M for IDF. It's nuts just how far he will go just to make her life a better one
Most famous streamers use their riches for vacations, cars, or throwing awesome parties. Meanwhile, Mousey: “I use the thousands for my weekly “Keep-living” juice…”
She also purchased a House for her and her parents to live in which is a huge source of pride for her (and not an excuse to buy every cinnomoroll in existence) Edit: Changed the way I wrote this so it won’t be construed as a negative.
@@Dayman87 Sorry about that. English is not my native langage so it is difficult to understand the meanings of short phrases like yours. Have a nice day
@@Dayman87 Somewhat recently she told the story about how her mother seemed to be missing for a day... It turned out that she had been having car trouble for some time, but didn't bring it to anyone's attention, and it finally broke down so she hitched rides to get home. When Ironmouse found out what happened, she bought her mother a new vehicle.
Because of her illness, her parents had to basically cancel their retirements and still couldn't afford everything she needed. Thanks to her popularity and success, however, she can now afford all the treatments she needs and pays for everything so her parents no longer have to work. And she now owns a house in a nice neigborhood customized for her medical needs and her mobility. She mentioned the first time she came into the living room and sat on the couch, her dad started nearly crying because she could never do that in their old house.
The story of her buying her mom a car because her mom was too embarassed to admit the car broke down and instead just disappeared for a day was so heart wrenching.
Didn't she say she bought the house for them as well? Like she was so admit that she pay her parents back for always helping her, she is just that kind hearted and amazing. Even through all this, she thinks of others too. It's what makes those around her want to spoil her I think, lol.
Although a number of people do not get this good of an outlook, its nice that the internet can provide a chance to improve at least a few people's lives. I wonder if Ironmouse and GoodTimesWithScar have ever heard of each other or talked. I feel like they would have a lot to say, having similar stories.
@@angelsinthewindow FIRST she paid off her parent's house. Then LATER she bought a new one, customized for her, although she intended for them to live with her as well.
As I understand it, her mobility issues are related to her hospital stay. She lost enough muscle mass that walking became difficult, but she has been getting better. she recently talked about how she was able to use the treadmill that day.
Use it or lose it. For a long time she was in a condition where walking wasn't possible, and she lost the muscle. Luckily she can get it back with a good training routine.
@@InaYu2024 From what I understand she checks everything she does with the various medical professionals she's in contact with. As mentioned in the video she's done a lot of her own research into her condition, enough to know how much she doesn't know. 😀
This video is about mouse, but i think Connor needs some credit too. (He's the british dude she was talking to in one of the clips). He's been an incredible friend to her since they met a couple of years ago, and has helped spread awareness for CVID and has raised literal MILLIONS of dollars for the Immune Deficiency Foundation through various charity streams He's done over the past couple of years. His most recent one alone raised over a million by itself. He also enables her cinamoroll addiction lmao
When I hear such things I mainly ask myself, why people have to raise some (in the end meager) millions for such things, when we got such massive economis going on wasting endless billions on all kind of absurd up to destructive shit.
There's more than a few people online that think she's faking her illness, this video proves them dead wrong. You should totally hear her singing, by the way - she was studying to become an opera singer before her CVID worsened, and it definitely shows; the fact that she's able to sing THAT well despite her respiratory issues (the root cause of her child-like voice, too; she's not using a voice changer), her friend Connor put it best: it's almost like black magic. I never expected to become a fan of a grown woman that hides behind an anime girl avatar to play, sing, and hurl Spanish-language profanity at people, but Mouse, it's impossible to hate her: sure, she can act like a petulant, spoiled child at times (especially when Connor and/or Cinnamoroll plushies are involved), but she's been more of a positive influence on the world (it's not just how she single-handedly caused a spike in plasma donations, or the millions she raised for charity, several of her colleagues and friends credit her for getting them out of abusive workplaces or even saving their lives) from her bedroom than most people would be while in perfect health.
1 of my first and favorite Ironmouse moments is when she needed a new workspace that would work in her bed as she called it and hade it set as a donation goal of $2k. The time to reach that goal was 240days. Waiting that long was not gonna happen and chat made that goal in less then 8min. A few min in and she was halfway to the goal and hade barelly hade time to explain what the dono goal was for yet. Understandable she got so emotional and started to cry that she hade to pause her stream for a while. Also if u havent seen it yet look up Ironmouse singing and it will blow u away.
I was watching during that stream. I couldn't afford to donate anything, but I was there. I had heard of Ironmouse from a couple of other streamers and thought I'd check her out. When she hit that goal almost instantly, she was floored. She was so thankful and overwhelmed it was the most wholesome thing I'd ever seen. I was instantly a fan and have been ever since.
I just looked up this clip (I got into Ironmouse more recently) and that is one of the sweetest clips ever. And the comments on the video are hilarious. I love Ironmouse, I'm so glad I found her and Connor.
That was the first Mousey clip I ever saw!!! I remember being curious and then I saw her talking to CDawgVA about how oxygen equipment is never accurate in movies and it made me curious about her.
@@Nightingale_timeI also like the larger community of streamers that she intersects with: Sykkuno, Toast, Valkyrae, Kara Corvus, Corpse. They all seem very invested in her well being, many of them donated to the auction Connor hosted, and they seem invested in helping her have a good time and keeping her spirits up. So they will play Among Us or Lethal Company or Goose Goose Duck together and I'm sure it helps her forget when she is playing games with friends.
She’s also battled long COVID for several months and her respiratory surgeries have pitched up her voice significantly. She’s truly a brave individual.
@@BriEnr Some people lose hope and/or see a lack of purpose thus giving up and collapsing. We naturally cling to life but we can also despair into our bodies quietly self-destructing.
@@raccoonchild And chronic health problems fuel depression, which can make it difficult to impossible to deal with day to day life. Getting out of bed and eating can be a challenge, much less pain and feeling bad.
@@BriEnr When she started Vtubing she was on that line of giving up. The main reason she’s kept going so long is her fan base and friends she’s made. Shes made that known before.
She's also a He who can use audio apps and what have you... (Oh f you you wanna say to me I KNOW!!) Also don't care and won't read your crap.... she is a HE who has made insane choices... you THINK YOU KNOW this DUDE using a girl anime cam layover WTFH?!?!?! anyone who votes for harris... def a mouse fan.... bible has laid it out long ago.... you think you will change it? Come and take it. Don't miss this time. We sure af won't
I feel like there are probably more than a few people that have benefited from Mousey and Connor (and now YOU!) bringing exposure to her condition. Also, DONATE PLASMA!
I wish I could donate blood or plasma, but every time I have to get blood drawn by a doctor, I immediately pass out regardless of whether I look away, or lay down, or whatever... the doctors say it's just a nervous system reaction so there's no way to prevent it...
To say nothing of all the money Connor has raised during his now infamous 'Cyclehtons' across Japan, the latest of which raised an eye watering $1,021,458.71 for the Immune Deficiency Foundation (IDF). Having Pewdiepie join for a couple days, bringing in his literal hundreds of millions of fans was brilliant. Talk about getting eyes on the problem! It's incredible to think of the impact that just *one* impossibly brave woman and her friend have made for sooooo many other people.
It's sad because I've always wanted to donate blood but I have an issue with my weight and have never been above 100 lbs, even now as an adult my average weight is 92lbs. It makes me so sad
I used to donate blood, but now I'm not allowed to donate even plasma due to an autoimmune disease. Sucks tbh, I would donate plasma every 2-3 weeks. Apparently it's allowed in the USA, so it seems it's bureaucracy as well.
I can tell you from experience that when you have a permanent disability or medical condition like that, most people respond one of a few ways. Humor is one of the more laudable. It's hard to keep up every day of your life but the alternatives are pits that can hold you forever. She is a warrior, because I'm sure she's been tempted more times than you can imagine to just throw herself into those pits, but she's still here and crushing it.
@@MilkieMouse I was about to comment basically this. Those of us who have disabilities etc aren't as shocked about her 'being a warrior' as others are because like... We also live that even if our disabilities aren't necessarily as severe. And we all know that for the most part, we tend to put on a good face. Most of us aren't going in public or onto streams and talking about the Darker Days or doing so in an obviously depressed or broken state. People don't get it anyway, they don't want to know and don't care.
@@SpoiltLittlePrincess to add to your last sentence, you forgot a few smaller groups I've also encountered, those who push to know then get mad you gave them "the depressing details", those who don't know but make assumptions and pity you regardless of what you do or say, and the smallest but probably worst group is the weirdos who hang on to people with chronic conditions because they have different motives such as stealing space from that person, trying to get info to internet munch online, or who have weird dying/chronic illness fetishes. I'm honestly fine either way if people want to know about my issues or if they don't. It's when they start getting weird about it or start treating you like a prize or a prop that's an issue.
@@SpoiltLittlePrincess there's a video on the story of this guy who smoked till he died, posting many progression videos on UA-cam, I think it's similar to the dying fetish thing.
I'm blood type AB+, and Mousey got me to start donating plasma. I knew I was a universal blood recipient, but I didn't know I was a universal plasma donor until recently.
i wanted to donate my plasma once and i was told i could never do it because of my own health. chronic right ear infections 1-2 time a year if not more. it can go up to 8 or more in one year so since my doctor said that i can't donate because of that i just went with that. my body needs everything it has for my infections i get so often in my right ear.
@GOLD3NROD Well, that is awesome. I'm glad you're contributing. Not everyone one would, even if they knew that fact about themselves. You're saving lives and there's nothing better than that.
WAIT what? I always went "meh it's not like they needed AB+...and I'm not that healthy, so if no one wants it badly why bother" when I thought of donating blood. I know AB+ should ideally get AB+, but it just didn't seem like a good enough incentive. I didn't know my "selfish" blood type has any uses. They didn't teach this in school where I grew up, wish they did. I'm going to start donating
Similar case here. While I don’t have a diagnosis for whatever may be wrong with me, I have such an immense admiration for ironmouse because it gives me a bit of hope that I too can continue powering through life.
As someone with a chronic condition myself, you nailed it on the head when you said we get used to it. Anyone who's spent more than about an hour around me will usually end up asking questions like "Jesus how do you keep going with all that going wrong!?", and it's just like.... I dunno. I just do. Gotta keep moving. My own immune system wants my nervous system dead, and when you've got tiny rats chewing at the wires in your brain and spine, all SORTS of weird shit starts happening. But yeah. You live with it long enough, you just kinda get used to it.
Do you have Multiple Sclerosis by chance? I do and the tiny rats chewing at the wires in your brain and spine is exactly what happens with me. They chew all their nerves 😟
@@HeavyMetalKittenx that's what all signs are pointing to, although the American medical system is broken enough that they just don't want to bother running the necessary tests. One MRI would confirm, but insurance agents get to make the decision on whether or not that gets to happen.
@@TacComControl that’s what sucks. It shouldn’t be that way. I hope you find a good MS specialist over a neurologist, you will get treated better. (I had both) if they find lesions. I hope it gets figured out soon enough for you❤️ it is mainly manageable once you’re not flaring up.
oh my God so much same. literally, so much same, but I really don't feel like keeping going but I just...do. I want to give up so badly but I just keep going. I've been sick for a longgg time, but in the past year it worsened so badly, I'm dependent on painkillers, both OTC and a nerve one. there used to be days I couldn't expand my lungs all the way, they feel squeezed and compressed, but now it's basically everyday. I'm 90% I have an inguinal hernia on my left side, I hope to find out Monday. I have many other issues but that's the one that's making me suffer the most you know? you have so many things going on, you end up just focusing on the most painful issue with doctors. Ive even gone to the ER in the past month twice. the first time, it was because I literally just breathed in and felt my entire body course with pain, passed out, then came to sweating and not being able to keep my eyes open....*and they said it was anxiety.* literally said "here, take one of your panic meds, it's probably just stress and anxiety"...when I was actually feeling okay for once. the second time they focused on my uterus and said it's from ovarian cysts which I've known about and I know can't be causing all my issues. American health system is geniunely a damn battlefield man, it's like you have to fight to not suffer. and because I've gotten so used to the pain and other reasons, I don't outwardly show it (no crying and stuff), so it's even harder to be taken seriously. I'm sure you know about that, you just get used to it. sorry to kind of dump here. I really don't have anyone else and it's just nice to find someone who could probably relate. I really hope you and everyone who's chronically ill and desperately seeking answers, to get them, so you can get the help you need. I wish you the best.
thisssss. my sister tells me all the time after she spends a day or 2 in some minor pain (minor in relation to myself btw, not trying to minimize her pain) that she has no idea how I handle my chronic pain every single day and she doesn’t get how i haven’t gone crazy from it. i just tell her after a while you get used to it. it HAS to be a new normal to deal with. when you have a job, bills to pay, and stuff to do you have no choice but to figure out how to keep going. if i didn’t have access to pain meds it would be a totally different story, but now i kick it to the back of my mind best i can so i can function
Mousey's health has improved _a lot_ because she's gotten better access to the things she need. But plasma shortages can still set her back. We all enjoy watching her get better and better. Plus, she's become surrounded by precious friends and famoly online. When you can be genuinely happy, your quality of life improves exponentially. She's such a huge ambassador for both IDF and VTubers. She's an inspirational hero. Thing is, her self-confidence is extremely low. So everyone strives to uplift her so she can see everything she's done. Also, Zooted Mouse. I'm so glad for her friendships to people like Connor.
Mouse has said before her condition did not present until somewhere in her late teens to early 20's, but has not specified exactly when. She had a driver's license, was working part time and studying to become an opera singer when the synptoms appeared extremely suddenly
Connor is honestly the absolute best friends you could ever have. Not only does he put himself through pain and torture to help raise funds, he also takes lots of his free time to go explore places while she's talking to him and he's holding a camera so she can see the things she probably never thought she'd ever get to see. He buys her cute toys and stuff all the time. He's truly just such a nice dude. She's like his little sister. I really hope that one day, they're able to finally meet so she can get a great big hug from her because everyone knows she will absolutely be bawling her eyes out. That poor girl deserves the world and I'm glad that Connor tries his best to give it to her.
abit sad though because connor wants too donate also but he can't because of his blood disease so he does his donation through the charity event cyclethon he have done multiple times ♥
@@vecghul2793 He has hemophilia a bleeding disorder in where the blood does not clot properly. That's why everyone freaks out when he falls off his bike in the cyclethons & hurts himself.
@@silver1step oh shit I had no idea. No wonder why he's so passionate. Imagine being besties with someone and you can't like physically give to help. ((Of course not saying the donations aren't good enough, just that if he could we all know he would))
People also worry because his streamer/youtube personality is like “OH IT’S FINE” and I remember on trash taste Joey or Garnt commented he’s not as bad irl, but still doesn’t give as many fucks as one would hope.
Connor does have haemophilia, but he also mentioned that he has one of the milder variants (blood clotting is a complex biochemical process which can be broken in different ways, at different points), and he takes drugs to control it, which makes him almost as a person without that condition, except can't donate blood, and anyone like surgeons or dentists have to know he has hemophilia. He's fine. And, honestly, I think he did more for the immunodeficiency awareness and plasma donation awareness than he could have ever done by just donating blood or blood components. He did another cyclothone just recently. He is a true hero.
I don't watch her content, but I gotta say, Ironmouse is definitely tougher than 99.9% of the human race. Most people in that situation would give up and die. She said "nah, screw that" and kept right on going. Even managed to become self-sufficient so her parents wouldn't have to run themselves into the ground trying to make sure she could get the treatments she needed. You have to respect it.
You underestimate just how powerful the human spirit can be. You don't necessarily think you'd have the strength to overcome such adversity, but when faced with it, and lacking any alternative, it's incredible how most people can dig down deep and learn to live with their condition. I was diagnosed with cancer when I was four, lost one of my kidneys to it, then lost the second at 19 to Polycystic Kidney Disease. I spent six-and-a-half years with a machine as my lifeline. Even after my first transplant I struggled with infections and medication, only to lose my graft after four years. It took another five-and-a-half to receive my second organ. There's no doubt that it gets tough at times, but when it comes right down to it, there is no respawn point or save state to life, and what is "normal" to someone is, in the end, entirely subjective to the individual. Most people, in spite of wishing the condition wasn't part of their life, will find it in them to accept the card that fate has dealt them and push forward in spite of it, and sometimes, even BECAUSE of it -- because there's no better way to give a middle finger to your disease than to just keep living your life.
That false lmao, she not the only person with all that, lot of other people have it and fight it too, you just dont know them cause they ar enot youtubers
I'm sure there are a lot of other people like this we just don't see because they're not famous content creators. it's amazing what people are capable of. I feel like we often forget how much we can do with enough motivation.
No country for old man actually one of my favorite so I can vividly remember how to use an oxygen tank:) In chinese we have a phrase "久病成醫" , which means when you are sick for long enough you become a doctor, thats pretty much mousey
Ooooh, there’s a term for it, thats honestly nifty. I feel like that applies to most chronically ill people, you have to know a lot in order to advocate for yourswlf.
What I love with Ironmouse is she also played a huge part on spreading awareness about PI and the importance of plasma donations. She is also recognized plasma hero of the Immune Deficiency Foundation and has been featured on their website a couple of times, and she is even scheduled to be a keynote speaker in the upcoming Primary Immunodeficiency Conference hosted by the Immune Deficiency Foundation
the realization that ironmouse is extremely extremely fragile and at any moment, at any given time, if anything just unlucky happens, we could lose her...that...is giving me anxiety for her...my god.
I remember her saying she called Connor because she was terrified she was going to die when she first got Covid. Her doctors had told her it was a death sentence, but she's still here. She's so strong.
@@Nightingale_time yeah, I remember not that long before she got it she made some dark jokes to her friends on stream about how she wouldn't tell them if she got covid because she wouldn't be here anymore to say so. I'm so glad she managed to prove herself wrong about that.
So sorry about the audio quality all! Some of you have kindly pointed this out to me - I think I did something funky with my mic for both this and the new Trash Taste video. I will fix it next time 🙏I'll see you in the next one!
It's a crime against humanity, and when I hear about Mouse's success story, all I can think about is the countless people with her condition that *don't* achieve breakthrough internet microcelebrity. The standard for affording your medical bills shouldn't be a moonshot, or anything except 'that's what we have a civilization for', like a fire department or like, roads.
My medication costs me $13,000 USD (insurance pays partially and the rest a foundation convers for me). 13,000 twice every 6 months. It HAS to be done at a hospital because it’s a cancer treatment I’m on that can cause me to stop breathing. I couldn’t imagine doing that on my own. Especially since I’m on disability!
I get plasma infusions done every month for my autoimmune disease and it’s definitely…insanely expensive lmao. I think it’s $12k on my end but thankfully I have a good insurance that covers the bulk of it 💀
Mouse did an interview (as did her friend Connor) with the immune deficiency foundation and she wasn’t diagnosed until her late teens. You should listen to it. It dives into how she got diagnosed and her struggles leading up to it. But Mousey is now stronger than ever. She can walk for short distances and go outside for a while. She is building up her strength on a treadmill. She is in a much better position medically than she ever was in her life and being a Vtuber helped her immensely with the mental strain of loneliness and dealing with her condition.
Great video. For those who are interested, she's been doing much beter in recent years. I started whatching her when she couldn't stream for long. I remember when she did her first 11 hour stream and how tired she was after it. Now she streams 12-13 hours all the time. Her success as a streamer really sabed her life by letting her get better treatment. Mousey is truly an inspiration.
Hearing " Immune system attacks itself " makes me cringe every time, because I remember fighting Acute Lymphatic Leukemia. I had to get so, so many bags of blood and plasma. At the end of all of this stuff, we look at my bill for staying in hospital so often and so long, so much chemo, so much blood, so much plasma. I had a chest port too. Easier to give me chemo, morphine and blood that way. Direct line to the heart. That morphine hit QUICK. They'd start a chest IV, start my chemo, then because I had to sit there for an hour they would help hook up my charger for either my phone or my DS, shoot me up with a big dose of morphine and I'd just sit there playing Lego Battles for the Nintendo DS. Lol. All of that treatment amounted to a leftover bill of around something like 100M dollars and the hospital basically told me " Look, you've got three insurances because you're also using our financial aid program, so just sign off that you can't cover that and we get a tax write-off. " - Apparently before that my bill was something to the tune of 250 - 300M and the insurances covered about 66% total. It helps that I was also a medical experiment. I was being studied for " How does a patient with both Ehlers Danlos Syndrome and Leukemia react to various chemos and treatments? " Because of me, they now know " NEVER GIVE THEM STEROIDS UNLESS ABSOLUTELY NEEDED. THEY WILL DEVELOP AVASCULAR NECROSIS AND REQUIRE SURGERY. "
Your comment needs to higher with more likes. I don't mean to sound like I'm downplaying Mouse in a video about her (she truly is a Titanium Rodent) but holy shit man you're also one hell of a trooper!
Thank you for covering Ironmouse! Her fame and friendship with Connor has helped change US legislation through their charity work the Immune Deficiency Foundation charity. He recently raised 1 million USD for the charity, and her fame has made the global donation of plasma go up. Btw your editing is very good and on point!
@@quantummelody2959 Not sure, but CDAWG has talked about it on the Cyclathon, and on the charity auction he had a while back the Head of IDF mentioned it. As I understand it helped make sure that doctors get information about CVID since just making the medical profession aware of it and getting research money had some issues. Im sorry I am not a US citizen, so being European I know very little. I havent watched them yet, but here is an IDF podcast interview with Connor ua-cam.com/video/LTDqSFzRpS4/v-deo.htmlsi=Dg7cX5_JxgFiNk46 and here is one with IronMouse ua-cam.com/video/d_OuKhUXkOU/v-deo.htmlsi=jPxn4D1i3emF7zTE I think they might have more info there.
@@quantummelody2959 mostly pushing FDA for drug approval, pushing for some of the life saving drugs PI patients need to be covered by health insurance providers, and the in-home IVIG program to be extended. but it is not clear how much influence Ironmouse and Connor on IDF's success, but they definitely increased awareness of CVID and how important these treatments are to the patients who need them.
i have a different autoimmune condition from RA called psoriatic arthritis or PsA for short. ironmouse is doing such good work getting visibility for people like us. 90% of the population has no idea what kind of shit we go through just to make it through the day and mouse is amazing for shining what light she has to the general public. also, you're entirely right that we (the chronically ill) usually have to become specialists when it comes to our diagnosed illnesses because it makes it much easier to self-advocate when navigating health care systems that tend to let people like us fall through the cracks if we DON'T keep advocating for ourselves, which is already hard enough on top of what we deal with on a day to day basis
My friend has hEDS, and and I can attest she’s become an expert on her condition. She has to heavily advocate for herself to pretty much everyone. She has surgery often due to tendon tears and uses mobility aids. It’s crazy how many people give her dirty looks when she uses a cane. Anytime she wears a boot people ask what happened. And people who are healthcare professionals have told her to do things that would be actively harmful to her because they don’t understand her condition. But she pushes through. It might be a different condition, but it’s a similar problem. we should all stand up for each other, and I love that mouse has blazed this trail for her condition.
I think I literally have that. Last year I tested for autoimmune diseases, and that doc said it was either psoriasis or rheumatoid arthritis. I'm definitely gonna look into this. I've been flaring up the past month and it's been hella frustrating.
Exactly how I feel. I have fibro. Simply because docs gave up trying to diagnose me. Test would come back fine but I'd be in agony in the office. Seeing mousey do what she does and hearing her gives me a little hope that I can do good things too.
I watched a stream where she spoke about waking up with blood all over her body I was so Scared and concerned for her! 😱 But i also hope she keeps her identity private coz her conditions might leak her wareabouts to potential creeps and pranksters id like her to stay safe and protected. She is famous and we all love her but let's not forget she's a human too!
Yup. There are FAR TOO MANY damned trolls on Earth. I am sure at least a few of them would jump at the chance to mess with her and her family IRL if they ever found out where she lives. These really are trolls, not Human people. They just love to inflict misery and laugh at the misfortune of others. They are monsters so I personally think they do not deserve Human Rights when they get caught.
10:00 she talked about being in bed for so long that her muscle atrophy is so severe she can barely walk. and because of her stomach issues, she can barely eat any protein to grow muscle. 14:09 classic case of 久病成医
The video that got me to watch her stream was when she put up a donation goal of I think $2,000 and she hadn't even fully finished explaining why she needed the money and chat reached the goal. She was absolutely bawling her eyes out and trying to explain that her bed was her workplace so she needed a special bed that would allow her to be comfortable and continue streaming. It really humbled me, just made me think how good I had it.
Mouse is an amazing person and an inspiration to so many people. When I got a chronic illness, it helped a lot to hear her talk about how she went through much worse than me, and still is singing and laughing her way through life.
I've always loved Ironmouse, not only because of her addicting and upbeat personality, but because despite her condition she deals with every day she has such a positive attitude about it. She's an inspiration to people with the same or similar conditions around the world and she deserves all the love she receives.
This was really informative to better understand Mouse's condition better. When I heard of her condition, I knew that she was strong but after watching this video I realized she is so much stronger than I originally thought. I'm very glad to understand more and thank you for this video review.
You are obviously very professional, but it's reassuring to see you have maintained a deep compassion, which i imagine is very heavy for you. Thanks for carrying that weight instead of discarding it. Compartmentalized, though it may be, I know it's not easy.
oh boy i remember watching her stream and she was in VC with connor, telling him she woke up and was covered in blood because her... tube where she gets medicine in opened... and dont forget shes still getting her plasma every week. thats a huge drain on your body, even as a normal person. yet shes so energetic on stream and if you didnt know you wouldnt get the feeling that theres anything wrong with her. shes such an inspiration. gotta love her [edit] oh and i dont mind getting jumpscared by your anime edits but holy... they were loud^^
As someone who is disabled, a lot of us need to learn about it ourselves since medical staff might not be aware of how our conditions affect us. The rarer the disorder, the more likely this is to happen. Mousey likely had to do a lot of research herself about her conditions, and figure many things out herself.
i’m disabled and i didn’t know this about her, i might have to watch her. i have totally different issues but her story gives me hope for my future. not because i think she’s inspiring for being disabled, but because i feel hopeless and stuck a lot with my issues, and i have a dream to be a streamer and/or own a small bookstore. she makes it feel possible
I found Mouse relatively recently, but she's so fun to watch and her community is so supportive. I love watching her and Connor. I remember her saying she called Connor crying because she was terrified she was going to die when she first got Covid. Her doctors had told her it was a death sentence, but she's still here. She's so strong.
I've never been an avid watcher of Vtubers, I've only seen clips of Ironmouse here and there, but this really gave those clips a bittersweet context. It is really sad she has to go through all of that, but to still face the world with such a vibrant personality despite all those hardships is extremely inspiring. Also, Yoshi caught me off guard lol, your editing is wild
I was so happy to hear her during a recent game stream with Connor. She seemed very enthusiastic and positive during that. I hope she improves over time. Thank you for this analysis so we can understand her trials. She is a true gem.
Ironmouse actually told us about how she was bed ridden for years and only just last year was able to start walking small distances such as the bathroom with support and more recently without help
As someone with chronic illness myself (I’ve been in a flare up for nearly 24 hours straight as of typing, good ol’ hEDS and heart problems), I appreciate Ironmouse being such a highlighted VTuber and in general spreading awareness about life with illness. It can really suck the energy out of you and make it feel pretty impossible to live an actual life, but she got very lucky to be in the position where she is today where her medical equipment and debts are no longer as much of a worry. Being born unwell is expensive.
I have so much love for her. The moments you are finding you are just about coping with whatever for something else to kick in or rather kick you! I've seen her CHRONIC FATIGUE - I get it so know how hellish that can be. Sickness, blood pressure all over the place, Breathing and respiratory madness.. Pain fuelled with frustration, anger, rage. She is truly a fighter. I have what some might call the opposite. My immune system literally is killing me from the inside out. Necrotizing Myopathy Necrotizing myopathy can also be referred to as necrotizing autoimmune myopathy (NAM) or immune-mediated necrotizing myopathy (IMNM). The condition is characterized by signs of necrosis, or cell death, in the muscles, which causes weakness and fatigue. As with other types of myositis, there is no known cause or cure for necrotizing myopathy.
@@InaYu2024 I am they say, one in a million, cept they then add.. 'what you have is so rare ' it's actually a million.. uhh million, million. Death? Uh now, tomorrow, next week, 6 months.. My CK levels were 30,000 ! My D Dimmer was 6250, WBC HIGH = RBC not carrying oxygen properly, SRP Autoantibodies / HMGCoR Autoantibodies
Ironmouse is amazing! I get so depressed dealing with my IBS and here she is dealing with some of the worst sounding conditions and she seems so positive.
Hearing others medical condition always hits the feels, I kind of know the struggle. I got SLE (Lupus Disease) and struggled like hell between the years of 6 up to 19. I basically almost lived in the hospital from time to time through my teens and almost passed two times due to kidney failing almost completely.. Today I feel much better and I'm pretty much stable and got very lucky. I really respect people like Ironmouse because if anything what we all share is never give up, always try to stay positive and take one day at a time.
As someone who has been chronically ill since the 7th grade and who finally got results that point to something like lupus after going to so many doctors and just ending up with a fibro diagnosis, thanks for giving me hope that life can turn out okay even if I have lupus. It's kind of a scary diagnosis, but I've been to so many people I'm just glad for what seems like answers. (I'm in my late 20's now)
im so so happy she is famous, as someone disabled, its so scary the medical bills and medicine... the fact she can finally pay not only for her medical needs but also her parents to retire is amazing
Yeah she's put in a ton of work over the last 7 years that we have been able to watch. And it shows. She's a unstoppable force. And is really inspiring to watch
As someone who has worked in both acute and postacute healthcare for the past 15 years, this is a FANTASTIC video for explaining both Ironmouse's situation, as well as the reality for so, so many patients' situations. Thank you for making this video!
Thanks for this look at her conditions. She is a very brave person, persistent even though all her issues she kept going and found a way to recover. This foundation helped her with advice, but also financially in some of her worst condition, which is why seeing Connor give more publicity and donations to the foundation has been so rewarding to watch. It's clear to me she has been close to death a bunch of times (one of her low points was during such a really long stay at the hospital and could hardly move anymore, I assume because she had no energy and muscular dystrophy - is that the term used in English to describe because of how much you've not used it, can't use it ? where she was close to giving up) and if you watch the Dr. K interview you'll see she has many mental issues as well in part because of it and other incidents in her life. 16:31 not to mention, chemo also can cause the veins to be less, ... let's say healthy and harder to inject with a needle.
@@PopeVancis Pearl Harbor was a huge shindig that occurred on December 7th, 1941 around 7:50-8:00 a.m. Japan decided to touch American boats with torpedos and armor piercing bombs and a fair bit of murderous intent. USS Arizona handled the whole kerfuffle poorly and ended up being an explosive little battleship. You can look up images of the ship online and get a rough idea of how badly she handled the whole affair. The whole affair was also rather unpleasant since America got fully involved in WW2 because of it. Also several thousand people died due to the wildness of the party. :danklaff: Looking back I misstated the ideal time. Ironmouse's immune system is more like the USS Arizona at 8:04:30. Not too far from disaster on any given day.
Woah thank you so much I learned a lot from this video. My sister was diagnosed with CVID on her early 20's I believe she was there at the hospital for almost 2 months. On 2020 she started to feel pain on one of her knee and just started to inflamed. She couldn't walk since it was painful so we have to push her using like a stoller. Has been bed ridden for couple of months she does go to the hospital every 3 or 6 months for her IVIJ and since last year her health has improved a lot. Although her left knee is still inflamed but she can walk on her own using her walker. She endured a lot since her childhood, she's a warrior.
I've watched this video a couple of times now but it's still really sad to hear what she deals with. The pain unfortunately also extends to loved ones and family because they're there to see the highs and lows from a 3rd person perspective. It's a blessing that she is able to do what she does, and it's also great that so many people support her
Oh yeah! To the point about the abnormal hearing, she's also mentioned that her hearing gets weird. She doesn't go deaf, but the way she explained it is that it's like y'know when people sing Happy Birthday and everyone is off-key? She's said that sometimes she'll hear things higher on one ear and lower on the other. I can't imagine what it's like to hear something like that. 😱
I had a similar experience after going to a metal concert without any kind of hearing protection. My hearing was messed up for like a week straight after that. I recall sounds in my left ear being slightly lower pitched than in my right ear. On top of that, any sound in the very high treble frequency range had a weird "grainy" quality to it which was rather uncomfortable in the first couple of days. Very unpleasant experience.
She’s so inspirational. I was sick for all of the last part of high school and then for the beginning of college. I really thought I was dying. It got really bad, to the point where I couldn’t get out of bed. I was diagnosed with Sjögren’s at age 18, finally. Before that, I was being treated for IBS, Fibromyalgia, and had gotten Mono. Then I came down with Influenza A. The next month, Norovirus. I never got better. I’m so grateful for my diagnosis. But at the same time, it’s hard to not feel inferior compared to others. I have mobility issues and bring medications everywhere. I can’t walk for long distances, and it’s difficult to bring my meds to concerts and other places due to security. Covid was terrifying, I was unable to go on paxlovid due to my medications. I still don’t feel 100%. And I had Covid back in November. It’s difficult watching people my age (early 20s) go out and do normal things. I’ve had a lot of friendships fizzle out. Ironmouse makes me feel better. I feel less alone.
I remember one time at work in screwed up my insurance so I had to pay full price for medications until the deductible was met. My asthma inhaler was $346 dollars uninsured here in the states. I ended up getting it from Canada for $60. I've never been more disappointed with my country. We are completely owned by insurance companies and I don't know if that will ever change, or if it even can.
thanks for sharing your story my friend. Canada has our own problems too: people have to wait for weeks before they can get a prescription from their doctor and millions of people here is out of family doctors for years…AND since low price of drugs, drug manufacturers don’t give us enough supply therefore some drugs are always out of stock (Tamsulosin is out of order for almost 2 years now)
I've been trying to find a video that explains her issues in a more structured and detailed way, as well as explaining general concepts, for a while now. It really helped get a grasp on the general workings of these conditions. Thank you very much . ^^
I used to donate plasma for years. At that time, my reasons for donating were purely selfish. They would pay $25-$50 per donation, which only took maybe 40 minutes of my time to sit in a comfy chair while hooked up to a cool machine lol. Seemed like a good way to make some extra money. I plan to continue donating when I can. It's nice to know how much it helps those that need it.
Honestly doing a good thing for a selfish reason doesn't remove the fact you did a good thing. People need money to survive, you probably helped save lives by donating plasma. Doesn't matter that you did it for the money.
I am in remission now but I was suffering from leukemia in 2022. I had about 50 lasma and platelet transfusions during my treatments. For whatever reason you donated you helped someone like me, so thank you.
It always warms my heart to see how far Connor goes to help Ironmouse. Aside from being there for her and raising money and awareness around the world, he will frequently use technology to bring her with him virtually, giving her a whole new level of autonomy that wouldn't be possible ten twenty years ago.
I know very little about ironmouse but she seems like an absolute trooper. To be able to remain so positive and use her platform to spread awareness is amazing. And thank you for the breakdown, never heard of cvid before this either
It costs a ton for her treatment. Obviously she's better off monetarily now, than she was before but still. During her move from the old house to her new one, she had to charter a medical jet. It had the doctors, nurses, equipment etc to keep her alive from one place to another as well as in case of some emergency. It cost her over $800,000 to rent it. Her mom & dad were in debt prior to her getting the V-Tubing gig; she didn't specify exactly how much but did say that it was for over 1 million. Mouse gets fed via a large IV bag of nutrients, as an example, the last time she "had" pizza she had to chew it & spit it out instead of eating it. Another danger for patients like this is meats in the us are not as well regulated as they are in the UK so it is solely dependent on the consumer / restaurant to properly cook the food to get rid of pathogens. In the UK they have full authority to suspend or shut down a plant if diseased meat leaves it there have also been consequences for those in charge if ppl died. In the US you get a slap on the wrist & go right back to production, just like the baby formula issue during covid. They need to push out so much product it would stall supply lines if they actually followed rules that benefited the customer the most. Prescriptions / med care is exorbitantly expensive here in the US. A good friend of mine needs heart meds daily. The cheapest (Generic) she could get here was costing $36,000 for a one month supply . All together it was about 82,000 per month. I recommended she try to get it from Canada, & she couldn't get them sent to her so she would travel to get them. To get all the same meds in Canada it only cost her about $900 for 4 Mo. Her most expensive one dropped from $36K to $500 & that was for a FOUR month supply- not 1 month like here.
oh gosh, most of these expensive drug is fully covered by government here in Canada. (That’s why drugs are way cheaper than the states since government signed the contract with pharmaceutical companies to limit their markups), but yeah, things are tough
With all due respect, you are gravely wrong about what you posted. She NEVER chartered a medical jet and her parents were not in debt for over 1 million dollars. Posting misinformation like this is very problematic. Please consider researching the facts rather than just spreading such incredibly incorrect statements.
@@satanaspawns1910 I watched it live on her stream. That's how I know what doctors etc where there because she decided to be nice enough to inform the rest of us. Somebody clipped at least the jet part; which I saw again probably a month or so after the original stream It's out there somewhere if you're not too lazy to find it. So the only one who needs to be researching the facts is YOU. She's also talked about her parents being in debt on multiple occasions, before she was part of Vshojo. You're obviously not good with math either. In the clip in this vid we were responding to she mentioned how much her plasma was- on avg 10-15K per bag, per week, 52 weeks in a year x 13K (Avg of 10-15K)= $676,000 in a year- Just for that alone. She also had to be fed intravenously for years. IV therapy is generally not covered by health insurance, and each infusion can sport a hefty price tag. The price of IV therapy varies nationwide, but customers can expect to pay on average between $200 & $400 per bag, depending on the chosen hydration or vitamin mixture. Jan 12, 2024 $300 (Avg per bag) x 356 days in a year, = $109,500 Those 2 combined amount to over $785,500 a year, ($676,000 + $109,500 = $785,500) & that's Excluding all other costs: Transportation, hospital & doctor visits, medications, HEPA filters, UVC & antibacterial replacements for her oxegenator, & Having her port cleaned/ replaced (usually every 3-5 yrs), medical taxes & surcharges, etc. In reality it's probably much closer to 2-3 million. She just recently was allowed to start eating some solid foods again- which is why she was almost crying while eating honey nut cheerios a day ago. ua-cam.com/video/vAyFMoyBGVM/v-deo.html
Thank you so much for taking the time of explaining in depth. I've always been a little confused. But it's so important to understand what people go through and how to help no matter how little it can be
I'm glad to see this pop up on my feed, you were ver informative and honestly, entertaining I have a sister here in the states that's a pharmacist, and I'm glad to learn Subscribed and liked
i watch her from time to time, ive heard her talk a little about having a condition that made her unable to leave her house, and often bedridden. ive also heard her sing before and she is angelic. it's heartwarming to hear that her success as an entertainer has allowed her to live a better live and provide for her family too
It is absolutely heart breaking but at the same time inspiring learning about mouse, her conidtions and how she takes it. The way she explains all the things she goes through and still being able to laugh and joke, goes to show she isnt letting this illness kill her spirit. Lots of people who getting diagnosed with any severe illness often lose their mentality, because of the thought of having to go through all these things to just live, and even loved ones around them get indirectly affected by it too. Shes showing a strength that is rare and not only having friends like connor, that are there helping spread awareness, but to have the ability to afford her treatments now thanks to vtubing and streaming. As well having a family that loves and willing to support her 💗 Shes truly one of a kind!
I love how people have become more open about their medical conditions. I grew up with hypogammaglobulinemia and people just could not understand how being around someone with a cold could give someone like me pneumonia so I’m glad people feel comfortable talking about health in public.
I think what gets me the most about stories of people’s disabilities and conditions like this is the sheer COST. Mouse and her fanbase are amazing for all the work they’ve done. I genuinely wonder how many people just flat out end up dead because of lack of care. Especially in the US which is known for this. It’s terrible people have to go through it.
Wow, as someone with a hereditary disease that’s left me feeling like I have to keep fighting a losing battle against my own body just to be happy. So seeing others like Ironmouse doing what she loves even after all she’s had to go through is really amazing. It’s amazing how strong she is. I grew up hearing I wouldn’t live to be 20 so I never bothered in school or personal life and just kinda slugged through life hoping to eventually just die and now here I am at 28 years old living life like a normal person but completely confused about what to do with my life. I hope more people that are fighting against the odds take inspiration from her and find something in life worth living for because it makes me sad to see people living life like I did.
My spouse suffers from a lot of health problems, and she LOVES Ironmouse because of how similar they are. Her disability is different than Mouse's, but as someone who is around disability 24/7 something really significant that I've noticed is that getting sick or hurt sucks. Even if you're able to manage your disability well enough to have a relatively normal routine, every time something goes wrong there's a possibility that you're never going to get better. I fall and break my hip, I'll be back to 99% within a year. I get an infection in my lungs, once I recover from it there's no lasting effects. When someone with invisible illnesses break something or get infections, that damage lingers for a long time, possibly forever. I think this is important to realize how much we take for granted in our every day lives that's a risk for people with invisible illnesses.
I have Ehlers-danlos syndrome and sometimes it's like I know more than most doctors I see 😅 it's sad but a lot of the time with chronic illnesses you have to learn everything you can to become you're own advocate
I love her story and how she beacme such a inspiration to everyone. She said no to what held her back and chose to rise above. no matter what life throws at her she will overcome it and become a shining light.
I wonder if Mouse will see this video. It would actually be interesting to see her react to it. Even, though I haven't followed her for very long it does seem like she has gotten a lot more comfortable talking about her condition, maybe in part because it helps bring awareness and understanding about it.
Mousey has inspired me everyday for almost 3 years now. I feel really lucky to get to watch her. Thank you for bringing more spotlight to this! If I ever catch myself feeling sorry for myself or something similar, I think of mouse. I wish her every single bit of success and happiness that life has to offer.
I love how you pointed out how well-versed Ironmouse is with all the medical jargon associated with her condition, which would be the case for a lot of patients with chronic diseases. I haven't seen anyone point that out yet. It made me realize how my mother (who had chronic leukemia) was the same ❤❤
As a Leukemia patient, I also have a port (right under my collarbone on my right side). A few drawbacks to having a port is it can: 1. Get infected 2. Have damage to the area (ex. thanks to some kinds of roller coasters) 3. 1-2 days after having it accessed you can't go in water 4. Feel uncomfortable at times (and for me it's annoying to sleep on my right side) 5. Leave a hefty scar (2-3in) for each patient (which I don't find that bad personally, but for others who find scars embarrassing it is not very fun) 6. Give you a taste of whatever's going through your line (ex. Heparin used to make sure platelets don't clog it tastes like Saltwater, ARA-C tastes like tap wter) Luckily though, from my experiences it is not that bad. I can't go on certain rides at theme parks or swim for 2 days after it being used, but I'm lucky enough to live in the modern day and age with things like Discord , Video Games, Programming, Social Media, and much more so it's a lot easier to talk with friends during treatment. If you read all the way to the end, thanks for your time
IT's been a few years since I had a port and the scar has mostly faded. I actually had to take off my shirt and check. I know you say you don't care about the scar, but even so, I think it's worth mentioning even that gets better. I only had mine for a few months and was in the hospital the entire time, so I didn't have to deal with some of the other issues you mentioned. The taste thing sure brought back memories, though.
I really appreciate your explanations of the different aspects of Mouse's disease and the way she copes with it. It brings a whole new dimension to my respect and love for Mouse.
Actually loved this video. While i can never work in the healthcare industry because im far too empathetic but things like this have always interested me.
As someone with eds and suspected pots, being informed about my conditions has been a game changer. I can adovcate for myself better, I can manage my symptoms better too.
What’s really sad is she is a trained opera singer and wanted to do that before the infection destroyed her lungs and throat, which also resulted in her trademark high pitched voice.
Once in a while she’s healthy enough to sing and her voice is jaw dropping
One more thing belonging to the real sad category is that she said to Connor she knew someone who was getting plasma daily and that this person is not around anymore. You can actually see the brick wall hitting Connor afterwards as he realises that someday he may call her only to find a void left by her moving to the better place, as many tend to call it
@@HrLBolle That was hard to watch.
And when she does sing she performs to an audience of thousands of people. That's the silver lining here. If you look at her viewer count while she's singing and look up real world venues that can hold that number of people she's filling out some big venues, every single time!
@@HrLBolleHey man, do you know where I can find that clip? I don't think I've seen it
@@NickCorruption it is mentioned in passing in the clip when Connor and Mouse talk about the cost of plasma
In the last few days Ironmouse succeed walking in the treadmill for 5 minutes and has, also, a stomach condition that make eats almost nothing, but she has improved a lot in the last year also thanks to access to better treatments. She's our gremolin warrior. Much love for Mousey.
To clarify stomach troubles, a lot of it comes from her having had her gallbladder removed. She can’t really digest fats anymore.
@@Penultimeat I don't think that would be the main cause of her not being able to eat almost nothing. My sister has no gallbladder and can still eat normally.
@@JolieBean6972 the antibodies she takes to fight off infections also kill of a lot of the necessary bacteria u need for digestion and other activities IIRC. that plus the lack of gall bladder is probably the reason her digestion is effected so much.
Mouse is amazing, I wish her nothing but the best in life
Brooke Goldner healed her lupus in 3 months with raw cruciferous vegetables and also have patiens that have healed many chronic diseases with her good bye lupus protocol she is on youtube and also carnivore diet have helped many heal chronic diseases aswell.
She did an interview with The Immune Deficiency Foundation. From what I gather she wasn't diagnosed with CVID till her late teens or early adulthood. She was inexplicably sick as a child, her condition then improved on it's own entering her teens, but then it drastically worsened and only after then was she diagnosed.
If I remember correctly, it's pretty common to improve a bunch during teen years.
I think I remember her saying she got diagnosed in college when she was unable to attend classes at one point and got to see a doctor who knew what her condition is, and then started to get the right treatments. But I've only seen one clip about that.
Brooke Goldner healed her lupus in 3 months with raw cruciferous vegetables and also have patiens that have healed many chronic diseases with her good bye lupus protocol she is on youtube and also carnivore diet have helped many heal chronic diseases aswell.
@blax100dk please no. Why would you make this comment about CVID. It's not even close. Nice if it even made a difference in people who suffered from lupus.
@blax100dk
You're a soulless woo merchant.
There's a clip you missed which also explains her using a walker. Basically, she was bed-ridden for a long time (it why she started vtubing), and she has some atrophy in her legs. She has recently gotten a treadmill and is trying to get back some of her walking ability.
I forget the clip, but I think she said that the atrophy had gotten to the point where she couldn't lift her head off of her pillow. It's a detail that's stuck in my brain.
@@Tony_AM009 I remember that too. Where she said she was always laying down most of the time. That was during one of her worst points.
@@Tony_AM009 In her earliest streaming days, she did her entire stream laying on her back and could only stream for a very short time, I want to say maybe an hour at most. Considering she does 12+ hour streams fairly regularly now, there's been much improvement.
@@Tony_AM009 Yikes. That's horrifying. I've had a hip infection before where I couldn't even sit up straight without severe pain (I needed pillows to be put behind me to support my back so I wasn't in such pain when sitting), but for her to have not been able to even lift her head due to atrophy is heartbreaking.
@@Infact77 Indeed. All the more reason to regard the strides she's made over the years to better her physical health as best as she's capable of doing as praise-worthy.
Little side-story. Connor, AKA CDawgVA, has done multiple cyclethons across Japan raising money for IDF alongside another UA-camr, Chris Broad (Abroad in Japan). In their last cyclethon, they raised over $1M for IDF. It's nuts just how far he will go just to make her life a better one
I though you were talking about the Israeli defense force at first. I was thinking why are some youtubers raising money for a military lol
Note: IDF in this context mean Immune Deficiency Foundation
@@MrWizardjr9 "and how the hell is that helping her?!"
@@nerobernardino88 Iron Mouse protected under the Iron Dome. 🤣
The Conner / Mouse friendship is honestly a goal.
Most famous streamers use their riches for vacations, cars, or throwing awesome parties. Meanwhile, Mousey: “I use the thousands for my weekly “Keep-living” juice…”
She also purchased a House for her and her parents to live in which is a huge source of pride for her (and not an excuse to buy every cinnomoroll in existence)
Edit: Changed the way I wrote this so it won’t be construed as a negative.
@@Dayman87 Sorry about that. English is not my native langage so it is difficult to understand the meanings of short phrases like yours. Have a nice day
@@Lornerin ah all good sorry I snapped, I’ll rewrite it so it’s a bit easier to understand my meaning
@@Dayman87 Thanks you :D
@@Dayman87 Somewhat recently she told the story about how her mother seemed to be missing for a day... It turned out that she had been having car trouble for some time, but didn't bring it to anyone's attention, and it finally broke down so she hitched rides to get home. When Ironmouse found out what happened, she bought her mother a new vehicle.
Because of her illness, her parents had to basically cancel their retirements and still couldn't afford everything she needed.
Thanks to her popularity and success, however, she can now afford all the treatments she needs and pays for everything so her parents no longer have to work. And she now owns a house in a nice neigborhood customized for her medical needs and her mobility.
She mentioned the first time she came into the living room and sat on the couch, her dad started nearly crying because she could never do that in their old house.
The story of her buying her mom a car because her mom was too embarassed to admit the car broke down and instead just disappeared for a day was so heart wrenching.
Didn't she say she bought the house for them as well? Like she was so admit that she pay her parents back for always helping her, she is just that kind hearted and amazing. Even through all this, she thinks of others too. It's what makes those around her want to spoil her I think, lol.
Although a number of people do not get this good of an outlook, its nice that the internet can provide a chance to improve at least a few people's lives. I wonder if Ironmouse and GoodTimesWithScar have ever heard of each other or talked. I feel like they would have a lot to say, having similar stories.
@@angelsinthewindow FIRST she paid off her parent's house.
Then LATER she bought a new one, customized for her, although she intended for them to live with her as well.
@@catwhowalksbyhimself Then it is even more then what I said. She is even more amazing with the care she shows to them.
As I understand it, her mobility issues are related to her hospital stay.
She lost enough muscle mass that walking became difficult, but she has been getting better. she recently talked about how she was able to use the treadmill that day.
Use it or lose it. For a long time she was in a condition where walking wasn't possible, and she lost the muscle. Luckily she can get it back with a good training routine.
Ahh yes that makes sense! I hope she’s getting solid advice from physiotherapists to help her regain her mobility 😊
@@InaYu2024 From what I understand she checks everything she does with the various medical professionals she's in contact with.
As mentioned in the video she's done a lot of her own research into her condition, enough to know how much she doesn't know. 😀
@@LaughingOrange
Not to mention it’s harder to absorb nutrients. Can’t fuel or build anything if your body isn’t getting what it needs.
The sad part is that the biggest part of her inmobility was because she couldn't afford a better treatment
This video is about mouse, but i think Connor needs some credit too. (He's the british dude she was talking to in one of the clips). He's been an incredible friend to her since they met a couple of years ago, and has helped spread awareness for CVID and has raised literal MILLIONS of dollars for the Immune Deficiency Foundation through various charity streams He's done over the past couple of years. His most recent one alone raised over a million by itself.
He also enables her cinamoroll addiction lmao
i like connor already, but from what else ive heard of him hes like a genuine saint, just a super nice guy according to like everyone whos met him
@@chrispifiedAll things considered, yeah. He’s definitely no fair weather friend, he’s a ride-or-die homie all the way
When I hear such things I mainly ask myself, why people have to raise some (in the end meager) millions for such things, when we got such massive economis going on wasting endless billions on all kind of absurd up to destructive shit.
@@miriamweller812 Yeah, it's insane that trillionaires exist whist that money could do so much more good.
He’s welsh
There's more than a few people online that think she's faking her illness, this video proves them dead wrong. You should totally hear her singing, by the way - she was studying to become an opera singer before her CVID worsened, and it definitely shows; the fact that she's able to sing THAT well despite her respiratory issues (the root cause of her child-like voice, too; she's not using a voice changer), her friend Connor put it best: it's almost like black magic.
I never expected to become a fan of a grown woman that hides behind an anime girl avatar to play, sing, and hurl Spanish-language profanity at people, but Mouse, it's impossible to hate her: sure, she can act like a petulant, spoiled child at times (especially when Connor and/or Cinnamoroll plushies are involved), but she's been more of a positive influence on the world (it's not just how she single-handedly caused a spike in plasma donations, or the millions she raised for charity, several of her colleagues and friends credit her for getting them out of abusive workplaces or even saving their lives) from her bedroom than most people would be while in perfect health.
Best comment on the internet 👏
I HAVE heard her sing and she sounds amazing! ☺️
She swears too much for me, but that’s how most younger folks in America are.
while true, she resides in puerto rico and is peurto rican rather than american. i think younger people generally just swear more globally.@grimmlinn
@@TheAustinely i dont think she lives in puerto rico, but ya cant take the Puerto Rician out of her thats forsure haha
1 of my first and favorite Ironmouse moments is when she needed a new workspace that would work in her bed as she called it and hade it set as a donation goal of $2k. The time to reach that goal was 240days. Waiting that long was not gonna happen and chat made that goal in less then 8min. A few min in and she was halfway to the goal and hade barelly hade time to explain what the dono goal was for yet. Understandable she got so emotional and started to cry that she hade to pause her stream for a while.
Also if u havent seen it yet look up Ironmouse singing and it will blow u away.
I was watching during that stream. I couldn't afford to donate anything, but I was there. I had heard of Ironmouse from a couple of other streamers and thought I'd check her out. When she hit that goal almost instantly, she was floored. She was so thankful and overwhelmed it was the most wholesome thing I'd ever seen. I was instantly a fan and have been ever since.
I just looked up this clip (I got into Ironmouse more recently) and that is one of the sweetest clips ever. And the comments on the video are hilarious.
I love Ironmouse, I'm so glad I found her and Connor.
That was the first Mousey clip I ever saw!!! I remember being curious and then I saw her talking to CDawgVA about how oxygen equipment is never accurate in movies and it made me curious about her.
That clip was actually the first clip I'd ever seen of Ironmouse. Had me crying my eyes out at her breakdown😅
@@Nightingale_timeI also like the larger community of streamers that she intersects with: Sykkuno, Toast, Valkyrae, Kara Corvus, Corpse. They all seem very invested in her well being, many of them donated to the auction Connor hosted, and they seem invested in helping her have a good time and keeping her spirits up. So they will play Among Us or Lethal Company or Goose Goose Duck together and I'm sure it helps her forget when she is playing games with friends.
She’s also battled long COVID for several months and her respiratory surgeries have pitched up her voice significantly. She’s truly a brave individual.
I mean, it’s not like she has another option. She has to keep going.
@@BriEnr Some people lose hope and/or see a lack of purpose thus giving up and collapsing. We naturally cling to life but we can also despair into our bodies quietly self-destructing.
@@raccoonchild And chronic health problems fuel depression, which can make it difficult to impossible to deal with day to day life. Getting out of bed and eating can be a challenge, much less pain and feeling bad.
@@BriEnr When she started Vtubing she was on that line of giving up. The main reason she’s kept going so long is her fan base and friends she’s made. Shes made that known before.
She's also a He who can use audio apps and what have you... (Oh f you you wanna say to me I KNOW!!) Also don't care and won't read your crap.... she is a HE who has made insane choices... you THINK YOU KNOW this DUDE using a girl anime cam layover WTFH?!?!?! anyone who votes for harris... def a mouse fan.... bible has laid it out long ago.... you think you will change it? Come and take it. Don't miss this time. We sure af won't
I feel like there are probably more than a few people that have benefited from Mousey and Connor (and now YOU!) bringing exposure to her condition. Also, DONATE PLASMA!
and in some places get paid
I wish I could donate blood or plasma, but every time I have to get blood drawn by a doctor, I immediately pass out regardless of whether I look away, or lay down, or whatever... the doctors say it's just a nervous system reaction so there's no way to prevent it...
To say nothing of all the money Connor has raised during his now infamous 'Cyclehtons' across Japan, the latest of which raised an eye watering $1,021,458.71 for the Immune Deficiency Foundation (IDF). Having Pewdiepie join for a couple days, bringing in his literal hundreds of millions of fans was brilliant. Talk about getting eyes on the problem!
It's incredible to think of the impact that just *one* impossibly brave woman and her friend have made for sooooo many other people.
It's sad because I've always wanted to donate blood but I have an issue with my weight and have never been above 100 lbs, even now as an adult my average weight is 92lbs. It makes me so sad
I used to donate blood, but now I'm not allowed to donate even plasma due to an autoimmune disease. Sucks tbh, I would donate plasma every 2-3 weeks. Apparently it's allowed in the USA, so it seems it's bureaucracy as well.
Laughing of her own condition and speaking of that with such lightness: Mousy is really a warrior.
I can tell you from experience that when you have a permanent disability or medical condition like that, most people respond one of a few ways. Humor is one of the more laudable. It's hard to keep up every day of your life but the alternatives are pits that can hold you forever. She is a warrior, because I'm sure she's been tempted more times than you can imagine to just throw herself into those pits, but she's still here and crushing it.
@@MilkieMouse I was about to comment basically this. Those of us who have disabilities etc aren't as shocked about her 'being a warrior' as others are because like... We also live that even if our disabilities aren't necessarily as severe. And we all know that for the most part, we tend to put on a good face. Most of us aren't going in public or onto streams and talking about the Darker Days or doing so in an obviously depressed or broken state. People don't get it anyway, they don't want to know and don't care.
@@SpoiltLittlePrincess to add to your last sentence, you forgot a few smaller groups I've also encountered, those who push to know then get mad you gave them "the depressing details", those who don't know but make assumptions and pity you regardless of what you do or say, and the smallest but probably worst group is the weirdos who hang on to people with chronic conditions because they have different motives such as stealing space from that person, trying to get info to internet munch online, or who have weird dying/chronic illness fetishes. I'm honestly fine either way if people want to know about my issues or if they don't. It's when they start getting weird about it or start treating you like a prize or a prop that's an issue.
@@chillchica9626 Omg people have fetishes for those with chronic/terminal illnesses?? Ewwww that one is new to me.
@@SpoiltLittlePrincess there's a video on the story of this guy who smoked till he died, posting many progression videos on UA-cam, I think it's similar to the dying fetish thing.
I'm blood type AB+, and Mousey got me to start donating plasma. I knew I was a universal blood recipient, but I didn't know I was a universal plasma donor until recently.
O shit really? Thanks for the info
i wanted to donate my plasma once and i was told i could never do it because of my own health. chronic right ear infections 1-2 time a year if not more. it can go up to 8 or more in one year so since my doctor said that i can't donate because of that i just went with that. my body needs everything it has for my infections i get so often in my right ear.
@@izoraiza7169yeah same for my own health (I had a really really bad time donating blood. Like fainting for months after bad)
@GOLD3NROD Well, that is awesome. I'm glad you're contributing. Not everyone one would, even if they knew that fact about themselves. You're saving lives and there's nothing better than that.
WAIT what? I always went "meh it's not like they needed AB+...and I'm not that healthy, so if no one wants it badly why bother" when I thought of donating blood. I know AB+ should ideally get AB+, but it just didn't seem like a good enough incentive. I didn't know my "selfish" blood type has any uses. They didn't teach this in school where I grew up, wish they did. I'm going to start donating
I love Ironmouse so much. I have an autoimmune condition that heavily impacts my daily life. She gives me a lot of hope.
Yes yes. Hang in there my Friend. Much ❤ sent over. That is tough.
Similar case here. While I don’t have a diagnosis for whatever may be wrong with me, I have such an immense admiration for ironmouse because it gives me a bit of hope that I too can continue powering through life.
As someone with a chronic condition myself, you nailed it on the head when you said we get used to it. Anyone who's spent more than about an hour around me will usually end up asking questions like "Jesus how do you keep going with all that going wrong!?", and it's just like.... I dunno. I just do. Gotta keep moving.
My own immune system wants my nervous system dead, and when you've got tiny rats chewing at the wires in your brain and spine, all SORTS of weird shit starts happening. But yeah. You live with it long enough, you just kinda get used to it.
Do you have Multiple Sclerosis by chance? I do and the tiny rats chewing at the wires in your brain and spine is exactly what happens with me. They chew all their nerves 😟
@@HeavyMetalKittenx that's what all signs are pointing to, although the American medical system is broken enough that they just don't want to bother running the necessary tests. One MRI would confirm, but insurance agents get to make the decision on whether or not that gets to happen.
@@TacComControl that’s what sucks. It shouldn’t be that way. I hope you find a good MS specialist over a neurologist, you will get treated better. (I had both) if they find lesions. I hope it gets figured out soon enough for you❤️ it is mainly manageable once you’re not flaring up.
oh my God so much same. literally, so much same, but I really don't feel like keeping going but I just...do. I want to give up so badly but I just keep going. I've been sick for a longgg time, but in the past year it worsened so badly, I'm dependent on painkillers, both OTC and a nerve one. there used to be days I couldn't expand my lungs all the way, they feel squeezed and compressed, but now it's basically everyday. I'm 90% I have an inguinal hernia on my left side, I hope to find out Monday. I have many other issues but that's the one that's making me suffer the most you know? you have so many things going on, you end up just focusing on the most painful issue with doctors. Ive even gone to the ER in the past month twice. the first time, it was because I literally just breathed in and felt my entire body course with pain, passed out, then came to sweating and not being able to keep my eyes open....*and they said it was anxiety.* literally said "here, take one of your panic meds, it's probably just stress and anxiety"...when I was actually feeling okay for once. the second time they focused on my uterus and said it's from ovarian cysts which I've known about and I know can't be causing all my issues.
American health system is geniunely a damn battlefield man, it's like you have to fight to not suffer. and because I've gotten so used to the pain and other reasons, I don't outwardly show it (no crying and stuff), so it's even harder to be taken seriously. I'm sure you know about that, you just get used to it. sorry to kind of dump here. I really don't have anyone else and it's just nice to find someone who could probably relate. I really hope you and everyone who's chronically ill and desperately seeking answers, to get them, so you can get the help you need. I wish you the best.
thisssss. my sister tells me all the time after she spends a day or 2 in some minor pain (minor in relation to myself btw, not trying to minimize her pain) that she has no idea how I handle my chronic pain every single day and she doesn’t get how i haven’t gone crazy from it. i just tell her after a while you get used to it. it HAS to be a new normal to deal with. when you have a job, bills to pay, and stuff to do you have no choice but to figure out how to keep going. if i didn’t have access to pain meds it would be a totally different story, but now i kick it to the back of my mind best i can so i can function
Mousey's health has improved _a lot_ because she's gotten better access to the things she need. But plasma shortages can still set her back. We all enjoy watching her get better and better.
Plus, she's become surrounded by precious friends and famoly online. When you can be genuinely happy, your quality of life improves exponentially. She's such a huge ambassador for both IDF and VTubers. She's an inspirational hero. Thing is, her self-confidence is extremely low. So everyone strives to uplift her so she can see everything she's done.
Also, Zooted Mouse. I'm so glad for her friendships to people like Connor.
What's IDF
@@potatopertato immuno deficiency foundation. They are a charity organization.
@@theflamedynamo1168 ohhh thank you!
@@potatopertatoAlternatively, this can also be interpreted as the Ironmouse Defence Force
donate plasma boyyyz
Mouse has said before her condition did not present until somewhere in her late teens to early 20's, but has not specified exactly when. She had a driver's license, was working part time and studying to become an opera singer when the synptoms appeared extremely suddenly
mouse is around the same age as connor? fr??
That sounds frightening. Having a normal life just to have it taken away by... a bad draw of the cards?!
That’s so scary
Connor is honestly the absolute best friends you could ever have. Not only does he put himself through pain and torture to help raise funds, he also takes lots of his free time to go explore places while she's talking to him and he's holding a camera so she can see the things she probably never thought she'd ever get to see. He buys her cute toys and stuff all the time.
He's truly just such a nice dude. She's like his little sister. I really hope that one day, they're able to finally meet so she can get a great big hug from her because everyone knows she will absolutely be bawling her eyes out. That poor girl deserves the world and I'm glad that Connor tries his best to give it to her.
abit sad though because connor wants too donate also but he can't because of his blood disease so he does his donation through the charity event cyclethon he have done multiple times ♥
Wait, Connor has a blood disease? It's true I don't keep up with him much, but this is the first I've heard of that.
@@vecghul2793 He has hemophilia a bleeding disorder in where the blood does not clot properly. That's why everyone freaks out when he falls off his bike in the cyclethons & hurts himself.
@@silver1step oh shit I had no idea. No wonder why he's so passionate. Imagine being besties with someone and you can't like physically give to help. ((Of course not saying the donations aren't good enough, just that if he could we all know he would))
People also worry because his streamer/youtube personality is like “OH IT’S FINE” and I remember on trash taste Joey or Garnt commented he’s not as bad irl, but still doesn’t give as many fucks as one would hope.
Connor does have haemophilia, but he also mentioned that he has one of the milder variants (blood clotting is a complex biochemical process which can be broken in different ways, at different points), and he takes drugs to control it, which makes him almost as a person without that condition, except can't donate blood, and anyone like surgeons or dentists have to know he has hemophilia. He's fine.
And, honestly, I think he did more for the immunodeficiency awareness and plasma donation awareness than he could have ever done by just donating blood or blood components. He did another cyclothone just recently. He is a true hero.
I don't watch her content, but I gotta say, Ironmouse is definitely tougher than 99.9% of the human race. Most people in that situation would give up and die. She said "nah, screw that" and kept right on going. Even managed to become self-sufficient so her parents wouldn't have to run themselves into the ground trying to make sure she could get the treatments she needed. You have to respect it.
You underestimate just how powerful the human spirit can be. You don't necessarily think you'd have the strength to overcome such adversity, but when faced with it, and lacking any alternative, it's incredible how most people can dig down deep and learn to live with their condition.
I was diagnosed with cancer when I was four, lost one of my kidneys to it, then lost the second at 19 to Polycystic Kidney Disease. I spent six-and-a-half years with a machine as my lifeline. Even after my first transplant I struggled with infections and medication, only to lose my graft after four years. It took another five-and-a-half to receive my second organ.
There's no doubt that it gets tough at times, but when it comes right down to it, there is no respawn point or save state to life, and what is "normal" to someone is, in the end, entirely subjective to the individual. Most people, in spite of wishing the condition wasn't part of their life, will find it in them to accept the card that fate has dealt them and push forward in spite of it, and sometimes, even BECAUSE of it -- because there's no better way to give a middle finger to your disease than to just keep living your life.
That false lmao, she not the only person with all that, lot of other people have it and fight it too, you just dont know them cause they ar enot youtubers
Why do you have to put down everybody like this? That's literally a backhanded compliment.
I'm sure there are a lot of other people like this we just don't see because they're not famous content creators. it's amazing what people are capable of. I feel like we often forget how much we can do with enough motivation.
@@Lumineanimation do you know what 99 percent means? It doesn't mean only one it means very few
No country for old man actually one of my favorite so I can vividly remember how to use an oxygen tank:)
In chinese we have a phrase "久病成醫" , which means when you are sick for long enough you become a doctor, thats pretty much mousey
Ooooh, there’s a term for it, thats honestly nifty. I feel like that applies to most chronically ill people, you have to know a lot in order to advocate for yourswlf.
What I love with Ironmouse is she also played a huge part on spreading awareness about PI and the importance of plasma donations. She is also recognized plasma hero of the Immune Deficiency Foundation and has been featured on their website a couple of times, and she is even scheduled to be a keynote speaker in the upcoming Primary Immunodeficiency Conference hosted by the Immune Deficiency Foundation
the realization that ironmouse is extremely extremely fragile and at any moment, at any given time, if anything just unlucky happens, we could lose her...that...is giving me anxiety for her...my god.
I remember her saying she called Connor because she was terrified she was going to die when she first got Covid. Her doctors had told her it was a death sentence, but she's still here. She's so strong.
strong as an iron, fragile as a mouse
@@Nightingale_time yeah, I remember not that long before she got it she made some dark jokes to her friends on stream about how she wouldn't tell them if she got covid because she wouldn't be here anymore to say so.
I'm so glad she managed to prove herself wrong about that.
@@Nightingale_time someone like her surviving covid is wild, hope she keeps on going
The doctors told her parents that if she got Covid, she was going to die! Thankfully she is still here.
So sorry about the audio quality all! Some of you have kindly pointed this out to me - I think I did something funky with my mic for both this and the new Trash Taste video. I will fix it next time 🙏I'll see you in the next one!
for me its ok. I allways use a Headset.
You can use RX de-clip to fix the "burnt" sound of it to some extent.
I have type one diabetes
Honestly, kind of on brand for Trash Taste to have the scuff mic so I personally don't mind lmao
Its not even that bad
The Algorythm brought me here, and now I feel blessed.
The prices for plasma ( and really any life saving medical stuff) in the u.s is just crazy and pretty sickening honestly 😢
It's a crime against humanity, and when I hear about Mouse's success story, all I can think about is the countless people with her condition that *don't* achieve breakthrough internet microcelebrity. The standard for affording your medical bills shouldn't be a moonshot, or anything except 'that's what we have a civilization for', like a fire department or like, roads.
My medication costs me $13,000 USD (insurance pays partially and the rest a foundation convers for me). 13,000 twice every 6 months. It HAS to be done at a hospital because it’s a cancer treatment I’m on that can cause me to stop breathing. I couldn’t imagine doing that on my own. Especially since I’m on disability!
yeah, I'd really hope there's insurance and charities and friends to help out in such situations. that's why community is so important.
I get plasma infusions done every month for my autoimmune disease and it’s definitely…insanely expensive lmao. I think it’s $12k on my end but thankfully I have a good insurance that covers the bulk of it 💀
US healthcare system…😮💨
Mouse did an interview (as did her friend Connor) with the immune deficiency foundation and she wasn’t diagnosed until her late teens. You should listen to it. It dives into how she got diagnosed and her struggles leading up to it. But Mousey is now stronger than ever. She can walk for short distances and go outside for a while. She is building up her strength on a treadmill. She is in a much better position medically than she ever was in her life and being a Vtuber helped her immensely with the mental strain of loneliness and dealing with her condition.
Great video. For those who are interested, she's been doing much beter in recent years. I started whatching her when she couldn't stream for long. I remember when she did her first 11 hour stream and how tired she was after it. Now she streams 12-13 hours all the time. Her success as a streamer really sabed her life by letting her get better treatment. Mousey is truly an inspiration.
Hearing " Immune system attacks itself " makes me cringe every time, because I remember fighting Acute Lymphatic Leukemia.
I had to get so, so many bags of blood and plasma. At the end of all of this stuff, we look at my bill for staying in hospital so often and so long, so much chemo, so much blood, so much plasma. I had a chest port too. Easier to give me chemo, morphine and blood that way. Direct line to the heart. That morphine hit QUICK. They'd start a chest IV, start my chemo, then because I had to sit there for an hour they would help hook up my charger for either my phone or my DS, shoot me up with a big dose of morphine and I'd just sit there playing Lego Battles for the Nintendo DS. Lol.
All of that treatment amounted to a leftover bill of around something like 100M dollars and the hospital basically told me " Look, you've got three insurances because you're also using our financial aid program, so just sign off that you can't cover that and we get a tax write-off. " - Apparently before that my bill was something to the tune of 250 - 300M and the insurances covered about 66% total.
It helps that I was also a medical experiment. I was being studied for " How does a patient with both Ehlers Danlos Syndrome and Leukemia react to various chemos and treatments? "
Because of me, they now know " NEVER GIVE THEM STEROIDS UNLESS ABSOLUTELY NEEDED. THEY WILL DEVELOP AVASCULAR NECROSIS AND REQUIRE SURGERY. "
Holy shit. You're a fucking gladiator.
I hope you're doing better now.
Holy sh*t what the f*ck happened to you mate?
Thank you for fighting and gracing life with your presence
Your comment needs to higher with more likes. I don't mean to sound like I'm downplaying Mouse in a video about her (she truly is a Titanium Rodent) but holy shit man you're also one hell of a trooper!
Wow this comment shouldn't be this low down, time to provide a boost to you.
I found mousey when I was about to check out, she inspired me to start back again but take it step by step.
Glad you’re still here with us ❤️
Im glad you're still here, even though it's a struggle sometimes. I've been there. Lemme know if you need a fren.
Hold fast.
Thank you for covering Ironmouse! Her fame and friendship with Connor has helped change US legislation through their charity work the Immune Deficiency Foundation charity. He recently raised 1 million USD for the charity, and her fame has made the global donation of plasma go up. Btw your editing is very good and on point!
wait what US legislation did they help change??
@@quantummelody2959 Not sure, but CDAWG has talked about it on the Cyclathon, and on the charity auction he had a while back the Head of IDF mentioned it. As I understand it helped make sure that doctors get information about CVID since just making the medical profession aware of it and getting research money had some issues. Im sorry I am not a US citizen, so being European I know very little.
I havent watched them yet, but here is an IDF podcast interview with Connor ua-cam.com/video/LTDqSFzRpS4/v-deo.htmlsi=Dg7cX5_JxgFiNk46
and here is one with IronMouse
ua-cam.com/video/d_OuKhUXkOU/v-deo.htmlsi=jPxn4D1i3emF7zTE
I think they might have more info there.
@@quantummelody2959 mostly pushing FDA for drug approval, pushing for some of the life saving drugs PI patients need to be covered by health insurance providers, and the in-home IVIG program to be extended. but it is not clear how much influence Ironmouse and Connor on IDF's success, but they definitely increased awareness of CVID and how important these treatments are to the patients who need them.
@@martianunlimited as Mouse said even the upper people at washington know about her so I think her influence is pretty far and wide
@@ducanhnguyen4242 source? So Americans can finally have healthcare system like Europeans have?
i have a different autoimmune condition from RA called psoriatic arthritis or PsA for short. ironmouse is doing such good work getting visibility for people like us. 90% of the population has no idea what kind of shit we go through just to make it through the day and mouse is amazing for shining what light she has to the general public. also, you're entirely right that we (the chronically ill) usually have to become specialists when it comes to our diagnosed illnesses because it makes it much easier to self-advocate when navigating health care systems that tend to let people like us fall through the cracks if we DON'T keep advocating for ourselves, which is already hard enough on top of what we deal with on a day to day basis
My friend has hEDS, and and I can attest she’s become an expert on her condition. She has to heavily advocate for herself to pretty much everyone.
She has surgery often due to tendon tears and uses mobility aids. It’s crazy how many people give her dirty looks when she uses a cane. Anytime she wears a boot people ask what happened. And people who are healthcare professionals have told her to do things that would be actively harmful to her because they don’t understand her condition. But she pushes through.
It might be a different condition, but it’s a similar problem. we should all stand up for each other, and I love that mouse has blazed this trail for her condition.
omg i cant believe i found another person with the same condition as me
I think I literally have that. Last year I tested for autoimmune diseases, and that doc said it was either psoriasis or rheumatoid arthritis.
I'm definitely gonna look into this. I've been flaring up the past month and it's been hella frustrating.
Exactly how I feel. I have fibro. Simply because docs gave up trying to diagnose me. Test would come back fine but I'd be in agony in the office. Seeing mousey do what she does and hearing her gives me a little hope that I can do good things too.
Isn't this basically BONE SCURVY?!?
I watched a stream where she spoke about waking up with blood all over her body I was so Scared and concerned for her! 😱
But i also hope she keeps her identity private coz her conditions might leak her wareabouts to potential creeps and pranksters id like her to stay safe and protected.
She is famous and we all love her but let's not forget she's a human too!
Yup. There are FAR TOO MANY damned trolls on Earth. I am sure at least a few of them would jump at the chance to mess with her and her family IRL if they ever found out where she lives.
These really are trolls, not Human people. They just love to inflict misery and laugh at the misfortune of others. They are monsters so I personally think they do not deserve Human Rights when they get caught.
10:00 she talked about being in bed for so long that her muscle atrophy is so severe she can barely walk. and because of her stomach issues, she can barely eat any protein to grow muscle.
14:09 classic case of 久病成医
The video that got me to watch her stream was when she put up a donation goal of I think $2,000 and she hadn't even fully finished explaining why she needed the money and chat reached the goal. She was absolutely bawling her eyes out and trying to explain that her bed was her workplace so she needed a special bed that would allow her to be comfortable and continue streaming. It really humbled me, just made me think how good I had it.
Mouse is an amazing person and an inspiration to so many people. When I got a chronic illness, it helped a lot to hear her talk about how she went through much worse than me, and still is singing and laughing her way through life.
It's true. We eventually get used to it, and it's hard to realize sometimes when it gets bad because we deal with it everyday.
Hang in there!
I had no idea it was so bad. Shes a champ. You too doc lady. Good info.
I've always loved Ironmouse, not only because of her addicting and upbeat personality, but because despite her condition she deals with every day she has such a positive attitude about it. She's an inspiration to people with the same or similar conditions around the world and she deserves all the love she receives.
This was really informative to better understand Mouse's condition better. When I heard of her condition, I knew that she was strong but after watching this video I realized she is so much stronger than I originally thought. I'm very glad to understand more and thank you for this video review.
You are obviously very professional, but it's reassuring to see you have maintained a deep compassion, which i imagine is very heavy for you. Thanks for carrying that weight instead of discarding it. Compartmentalized, though it may be, I know it's not easy.
oh boy i remember watching her stream and she was in VC with connor, telling him she woke up and was covered in blood because her... tube where she gets medicine in opened... and dont forget shes still getting her plasma every week. thats a huge drain on your body, even as a normal person. yet shes so energetic on stream and if you didnt know you wouldnt get the feeling that theres anything wrong with her. shes such an inspiration. gotta love her
[edit] oh and i dont mind getting jumpscared by your anime edits but holy... they were loud^^
As someone who is disabled, a lot of us need to learn about it ourselves since medical staff might not be aware of how our conditions affect us. The rarer the disorder, the more likely this is to happen. Mousey likely had to do a lot of research herself about her conditions, and figure many things out herself.
i’m disabled and i didn’t know this about her, i might have to watch her. i have totally different issues but her story gives me hope for my future. not because i think she’s inspiring for being disabled, but because i feel hopeless and stuck a lot with my issues, and i have a dream to be a streamer and/or own a small bookstore. she makes it feel possible
I found Mouse relatively recently, but she's so fun to watch and her community is so supportive. I love watching her and Connor.
I remember her saying she called Connor crying because she was terrified she was going to die when she first got Covid. Her doctors had told her it was a death sentence, but she's still here. She's so strong.
I've never been an avid watcher of Vtubers, I've only seen clips of Ironmouse here and there, but this really gave those clips a bittersweet context. It is really sad she has to go through all of that, but to still face the world with such a vibrant personality despite all those hardships is extremely inspiring.
Also, Yoshi caught me off guard lol, your editing is wild
I was so happy to hear her during a recent game stream with Connor. She seemed very enthusiastic and positive during that. I hope she improves over time. Thank you for this analysis so we can understand her trials. She is a true gem.
Ironmouse actually told us about how she was bed ridden for years and only just last year was able to start walking small distances such as the bathroom with support and more recently without help
Wow, this video is so informative. Iron mouse is such a brave girl
As someone with chronic illness myself (I’ve been in a flare up for nearly 24 hours straight as of typing, good ol’ hEDS and heart problems), I appreciate Ironmouse being such a highlighted VTuber and in general spreading awareness about life with illness. It can really suck the energy out of you and make it feel pretty impossible to live an actual life, but she got very lucky to be in the position where she is today where her medical equipment and debts are no longer as much of a worry.
Being born unwell is expensive.
I have so much love for her. The moments you are finding you are just about coping with whatever for something else to kick in or rather kick you! I've seen her CHRONIC FATIGUE - I get it so know how hellish that can be. Sickness, blood pressure all over the place, Breathing and respiratory madness.. Pain fuelled with frustration, anger, rage. She is truly a fighter. I have what some might call the opposite. My immune system literally is killing me from the inside out. Necrotizing Myopathy
Necrotizing myopathy can also be referred to as necrotizing autoimmune myopathy (NAM) or immune-mediated necrotizing myopathy (IMNM). The condition is characterized by signs of necrosis, or cell death, in the muscles, which causes weakness and fatigue.
As with other types of myositis, there is no known cause or cure for necrotizing myopathy.
Anything that has the word “necrosis” in the name can’t be good 😰 sending you good vibes!
@@InaYu2024 I am they say, one in a million, cept they then add.. 'what you have is so rare ' it's actually a million.. uhh million, million. Death? Uh now, tomorrow, next week, 6 months.. My CK levels were 30,000 ! My D Dimmer was 6250, WBC HIGH = RBC not carrying oxygen properly, SRP Autoantibodies / HMGCoR Autoantibodies
❤
Ironmouse is amazing! I get so depressed dealing with my IBS and here she is dealing with some of the worst sounding conditions and she seems so positive.
Hearing others medical condition always hits the feels, I kind of know the struggle. I got SLE (Lupus Disease) and struggled like hell between the years of 6 up to 19. I basically almost lived in the hospital from time to time through my teens and almost passed two times due to kidney failing almost completely.. Today I feel much better and I'm pretty much stable and got very lucky. I really respect people like Ironmouse because if anything what we all share is never give up, always try to stay positive and take one day at a time.
As someone who has been chronically ill since the 7th grade and who finally got results that point to something like lupus after going to so many doctors and just ending up with a fibro diagnosis, thanks for giving me hope that life can turn out okay even if I have lupus.
It's kind of a scary diagnosis, but I've been to so many people I'm just glad for what seems like answers.
(I'm in my late 20's now)
im so so happy she is famous, as someone disabled, its so scary the medical bills and medicine...
the fact she can finally pay not only for her medical needs but also her parents to retire is amazing
Yeah she's put in a ton of work over the last 7 years that we have been able to watch. And it shows. She's a unstoppable force. And is really inspiring to watch
She's such a trooper, her attitude is so optimistic considering her situation and here I am complaining about catching ringworm.
Iron Mouse has done more from her bedroom than most of us do in a healthy lifetime.
As someone who has worked in both acute and postacute healthcare for the past 15 years, this is a FANTASTIC video for explaining both Ironmouse's situation, as well as the reality for so, so many patients' situations. Thank you for making this video!
Thanks for this look at her conditions. She is a very brave person, persistent even though all her issues she kept going and found a way to recover. This foundation helped her with advice, but also financially in some of her worst condition, which is why seeing Connor give more publicity and donations to the foundation has been so rewarding to watch.
It's clear to me she has been close to death a bunch of times (one of her low points was during such a really long stay at the hospital and could hardly move anymore, I assume because she had no energy and muscular dystrophy - is that the term used in English to describe because of how much you've not used it, can't use it ? where she was close to giving up) and if you watch the Dr. K interview you'll see she has many mental issues as well in part because of it and other incidents in her life.
16:31 not to mention, chemo also can cause the veins to be less, ... let's say healthy and harder to inject with a needle.
Basically Ironmouse's immune system is the USS Arizona at 7:50 A.M. on December 7th 1941.
That sucks.
That's the most historically accurate but brutal analogy I've ever heard. Props to you. Sad analogy but props for an accurate one.
What happened I don't get the reference
@@PopeVancis
Pearl Harbor was a huge shindig that occurred on December 7th, 1941 around 7:50-8:00 a.m. Japan decided to touch American boats with torpedos and armor piercing bombs and a fair bit of murderous intent. USS Arizona handled the whole kerfuffle poorly and ended up being an explosive little battleship. You can look up images of the ship online and get a rough idea of how badly she handled the whole affair. The whole affair was also rather unpleasant since America got fully involved in WW2 because of it. Also several thousand people died due to the wildness of the party. :danklaff:
Looking back I misstated the ideal time. Ironmouse's immune system is more like the USS Arizona at 8:04:30. Not too far from disaster on any given day.
@@michaelmoses8745 thanks man
Woah thank you so much I learned a lot from this video. My sister was diagnosed with CVID on her early 20's I believe she was there at the hospital for almost 2 months. On 2020 she started to feel pain on one of her knee and just started to inflamed. She couldn't walk since it was painful so we have to push her using like a stoller. Has been bed ridden for couple of months she does go to the hospital every 3 or 6 months for her IVIJ and since last year her health has improved a lot. Although her left knee is still inflamed but she can walk on her own using her walker. She endured a lot since her childhood, she's a warrior.
❤ I so pray for Mouse, having an Autoimmune Disease myself (the opposite extreme of what Mouse has) She is my hero and an inspiration. ❤
I can feel how empathetic you are, you’re really amazing! I can imagine you’re an awesome human 😊 Thank you for an informative video as well!
This is, for me, the best video someone ever made about her ❤
I've watched this video a couple of times now but it's still really sad to hear what she deals with. The pain unfortunately also extends to loved ones and family because they're there to see the highs and lows from a 3rd person perspective. It's a blessing that she is able to do what she does, and it's also great that so many people support her
Oh yeah! To the point about the abnormal hearing, she's also mentioned that her hearing gets weird. She doesn't go deaf, but the way she explained it is that it's like y'know when people sing Happy Birthday and everyone is off-key? She's said that sometimes she'll hear things higher on one ear and lower on the other. I can't imagine what it's like to hear something like that. 😱
I had a similar experience after going to a metal concert without any kind of hearing protection. My hearing was messed up for like a week straight after that. I recall sounds in my left ear being slightly lower pitched than in my right ear. On top of that, any sound in the very high treble frequency range had a weird "grainy" quality to it which was rather uncomfortable in the first couple of days. Very unpleasant experience.
She’s so inspirational. I was sick for all of the last part of high school and then for the beginning of college. I really thought I was dying. It got really bad, to the point where I couldn’t get out of bed. I was diagnosed with Sjögren’s at age 18, finally. Before that, I was being treated for IBS, Fibromyalgia, and had gotten Mono. Then I came down with Influenza A. The next month, Norovirus. I never got better. I’m so grateful for my diagnosis. But at the same time, it’s hard to not feel inferior compared to others. I have mobility issues and bring medications everywhere. I can’t walk for long distances, and it’s difficult to bring my meds to concerts and other places due to security. Covid was terrifying, I was unable to go on paxlovid due to my medications. I still don’t feel 100%. And I had Covid back in November. It’s difficult watching people my age (early 20s) go out and do normal things. I’ve had a lot of friendships fizzle out. Ironmouse makes me feel better. I feel less alone.
❤I can relate❤
I remember one time at work in screwed up my insurance so I had to pay full price for medications until the deductible was met. My asthma inhaler was $346 dollars uninsured here in the states. I ended up getting it from Canada for $60. I've never been more disappointed with my country. We are completely owned by insurance companies and I don't know if that will ever change, or if it even can.
thanks for sharing your story my friend. Canada has our own problems too: people have to wait for weeks before they can get a prescription from their doctor and millions of people here is out of family doctors for years…AND since low price of drugs, drug manufacturers don’t give us enough supply therefore some drugs are always out of stock (Tamsulosin is out of order for almost 2 years now)
@@dudexx4317 Drugs being out-of-stock and wait times stretching over months to years is also a huge problem and actually worse here in America.
I've been trying to find a video that explains her issues in a more structured and detailed way, as well as explaining general concepts, for a while now. It really helped get a grasp on the general workings of these conditions.
Thank you very much . ^^
I used to donate plasma for years. At that time, my reasons for donating were purely selfish. They would pay $25-$50 per donation, which only took maybe 40 minutes of my time to sit in a comfy chair while hooked up to a cool machine lol. Seemed like a good way to make some extra money.
I plan to continue donating when I can. It's nice to know how much it helps those that need it.
Honestly doing a good thing for a selfish reason doesn't remove the fact you did a good thing. People need money to survive, you probably helped save lives by donating plasma. Doesn't matter that you did it for the money.
I am in remission now but I was suffering from leukemia in 2022. I had about 50 lasma and platelet transfusions during my treatments. For whatever reason you donated you helped someone like me, so thank you.
@@anjafrohlich1170 Actually, I get my blood back at the end of the procedure. So, the blood stays in my veins. They just get the plasma part.
It always warms my heart to see how far Connor goes to help Ironmouse. Aside from being there for her and raising money and awareness around the world, he will frequently use technology to bring her with him virtually, giving her a whole new level of autonomy that wouldn't be possible ten twenty years ago.
Ok just waiting for mouse to react
😳😳😳
Be the on to
"Wink mit dem Zaunpfahl " as we say in Germany when talking about giving someone a hint 😂
I’m sure she’ll watch on her own time, she just gets quite nervous and embarrassed
@@NightwingTV true
It's already happened!
I know very little about ironmouse but she seems like an absolute trooper. To be able to remain so positive and use her platform to spread awareness is amazing. And thank you for the breakdown, never heard of cvid before this either
It costs a ton for her treatment. Obviously she's better off monetarily now, than she was before but still. During her move from the old house to her new one, she had to charter a medical jet. It had the doctors, nurses, equipment etc to keep her alive from one place to another as well as in case of some emergency. It cost her over $800,000 to rent it. Her mom & dad were in debt prior to her getting the V-Tubing gig; she didn't specify exactly how much but did say that it was for over 1 million. Mouse gets fed via a large IV bag of nutrients, as an example, the last time she "had" pizza she had to chew it & spit it out instead of eating it. Another danger for patients like this is meats in the us are not as well regulated as they are in the UK so it is solely dependent on the consumer / restaurant to properly cook the food to get rid of pathogens. In the UK they have full authority to suspend or shut down a plant if diseased meat leaves it there have also been consequences for those in charge if ppl died. In the US you get a slap on the wrist & go right back to production, just like the baby formula issue during covid. They need to push out so much product it would stall supply lines if they actually followed rules that benefited the customer the most. Prescriptions / med care is exorbitantly expensive here in the US. A good friend of mine needs heart meds daily. The cheapest (Generic) she could get here was costing $36,000 for a one month supply . All together it was about 82,000 per month. I recommended she try to get it from Canada, & she couldn't get them sent to her so she would travel to get them. To get all the same meds in Canada it only cost her about $900 for 4 Mo. Her most expensive one dropped from $36K to $500 & that was for a FOUR month supply- not 1 month like here.
oh gosh, most of these expensive drug is fully covered by government here in Canada. (That’s why drugs are way cheaper than the states since government signed the contract with pharmaceutical companies to limit their markups), but yeah, things are tough
With all due respect, you are gravely wrong about what you posted. She NEVER chartered a medical jet and her parents were not in debt for over 1 million dollars. Posting misinformation like this is very problematic. Please consider researching the facts rather than just spreading such incredibly incorrect statements.
@@satanaspawns1910 I watched it live on her stream. That's how I know what doctors etc where there because she decided to be nice enough to inform the rest of us. Somebody clipped at least the jet part; which I saw again probably a month or so after the original stream It's out there somewhere if you're not too lazy to find it.
So the only one who needs to be researching the facts is YOU. She's also talked about her parents being in debt on multiple occasions, before she was part of Vshojo. You're obviously not good with math either. In the clip in this vid we were responding to she mentioned how much her plasma was- on avg 10-15K per bag, per week, 52 weeks in a year x 13K (Avg of 10-15K)= $676,000 in a year- Just for that alone. She also had to be fed intravenously for years.
IV therapy is generally not covered by health insurance, and each infusion can sport a hefty price tag. The price of IV therapy varies nationwide, but customers can expect to pay on average between $200 & $400 per bag, depending on the chosen hydration or vitamin mixture. Jan 12, 2024
$300 (Avg per bag) x 356 days in a year, = $109,500
Those 2 combined amount to over $785,500 a year, ($676,000 + $109,500 = $785,500) & that's Excluding all other costs: Transportation, hospital & doctor visits, medications, HEPA filters, UVC & antibacterial replacements for her oxegenator, & Having her port cleaned/ replaced (usually every 3-5 yrs), medical taxes & surcharges, etc.
In reality it's probably much closer to 2-3 million.
She just recently was allowed to start eating some solid foods again- which is why she was almost crying while eating honey nut cheerios a day ago. ua-cam.com/video/vAyFMoyBGVM/v-deo.html
Thank you so much for taking the time of explaining in depth. I've always been a little confused. But it's so important to understand what people go through and how to help no matter how little it can be
I'm glad to see this pop up on my feed, you were ver informative and honestly, entertaining
I have a sister here in the states that's a pharmacist, and I'm glad to learn
Subscribed and liked
i watch her from time to time, ive heard her talk a little about having a condition that made her unable to leave her house, and often bedridden. ive also heard her sing before and she is angelic. it's heartwarming to hear that her success as an entertainer has allowed her to live a better live and provide for her family too
The editing is too good for a channel with 600 subs
I can’t agree more😊
Thank you! I edited it myself ☺️
It is absolutely heart breaking but at the same time inspiring learning about mouse, her conidtions and how she takes it. The way she explains all the things she goes through and still being able to laugh and joke, goes to show she isnt letting this illness kill her spirit. Lots of people who getting diagnosed with any severe illness often lose their mentality, because of the thought of having to go through all these things to just live, and even loved ones around them get indirectly affected by it too. Shes showing a strength that is rare and not only having friends like connor, that are there helping spread awareness, but to have the ability to afford her treatments now thanks to vtubing and streaming. As well having a family that loves and willing to support her 💗
Shes truly one of a kind!
@17:12 the birdie outside went into a pocket dimension
😂
I love how people have become more open about their medical conditions. I grew up with hypogammaglobulinemia and people just could not understand how being around someone with a cold could give someone like me pneumonia so I’m glad people feel comfortable talking about health in public.
I think what gets me the most about stories of people’s disabilities and conditions like this is the sheer COST. Mouse and her fanbase are amazing for all the work they’ve done.
I genuinely wonder how many people just flat out end up dead because of lack of care. Especially in the US which is known for this. It’s terrible people have to go through it.
Wow, as someone with a hereditary disease that’s left me feeling like I have to keep fighting a losing battle against my own body just to be happy. So seeing others like Ironmouse doing what she loves even after all she’s had to go through is really amazing. It’s amazing how strong she is. I grew up hearing I wouldn’t live to be 20 so I never bothered in school or personal life and just kinda slugged through life hoping to eventually just die and now here I am at 28 years old living life like a normal person but completely confused about what to do with my life. I hope more people that are fighting against the odds take inspiration from her and find something in life worth living for because it makes me sad to see people living life like I did.
My spouse suffers from a lot of health problems, and she LOVES Ironmouse because of how similar they are. Her disability is different than Mouse's, but as someone who is around disability 24/7 something really significant that I've noticed is that getting sick or hurt sucks. Even if you're able to manage your disability well enough to have a relatively normal routine, every time something goes wrong there's a possibility that you're never going to get better. I fall and break my hip, I'll be back to 99% within a year. I get an infection in my lungs, once I recover from it there's no lasting effects. When someone with invisible illnesses break something or get infections, that damage lingers for a long time, possibly forever. I think this is important to realize how much we take for granted in our every day lives that's a risk for people with invisible illnesses.
I have Ehlers-danlos syndrome and sometimes it's like I know more than most doctors I see 😅 it's sad but a lot of the time with chronic illnesses you have to learn everything you can to become you're own advocate
Yup exactly 😅❤
I love her story and how she beacme such a inspiration to everyone. She said no to what held her back and chose to rise above. no matter what life throws at her she will overcome it and become a shining light.
This is very informative, i am happy to understand the struggle of ironmouse better. She is an inspiration.
I wonder if Mouse will see this video. It would actually be interesting to see her react to it. Even, though I haven't followed her for very long it does seem like she has gotten a lot more comfortable talking about her condition, maybe in part because it helps bring awareness and understanding about it.
Mousey has inspired me everyday for almost 3 years now. I feel really lucky to get to watch her. Thank you for bringing more spotlight to this! If I ever catch myself feeling sorry for myself or something similar, I think of mouse. I wish her every single bit of success and happiness that life has to offer.
Thank you for your insights, and being so respectful to Mouse. And shout out to Connor's charity work with The IDF.
I love how you pointed out how well-versed Ironmouse is with all the medical jargon associated with her condition, which would be the case for a lot of patients with chronic diseases. I haven't seen anyone point that out yet. It made me realize how my mother (who had chronic leukemia) was the same ❤❤
❤I've had to become the same way
As a Leukemia patient, I also have a port (right under my collarbone on my right side).
A few drawbacks to having a port is it can:
1. Get infected
2. Have damage to the area (ex. thanks to some kinds of roller coasters)
3. 1-2 days after having it accessed you can't go in water
4. Feel uncomfortable at times (and for me it's annoying to sleep on my right side)
5. Leave a hefty scar (2-3in) for each patient (which I don't find that bad personally, but for others who find scars embarrassing it is not very fun)
6. Give you a taste of whatever's going through your line (ex. Heparin used to make sure platelets don't clog it tastes like Saltwater, ARA-C tastes like tap wter)
Luckily though, from my experiences it is not that bad. I can't go on certain rides at theme parks or swim for 2 days after it being used, but I'm lucky enough to live in the modern day and age with things like Discord , Video Games, Programming, Social Media, and much more so it's a lot easier to talk with friends during treatment.
If you read all the way to the end, thanks for your time
IT's been a few years since I had a port and the scar has mostly faded. I actually had to take off my shirt and check. I know you say you don't care about the scar, but even so, I think it's worth mentioning even that gets better.
I only had mine for a few months and was in the hospital the entire time, so I didn't have to deal with some of the other issues you mentioned. The taste thing sure brought back memories, though.
I really appreciate your explanations of the different aspects of Mouse's disease and the way she copes with it. It brings a whole new dimension to my respect and love for Mouse.
Fellow pharmacist here -great video! 😀
Welcome!
Ina you're so cute and smart.❤
Nice to know what is happening to Ironmouse in more details.
Great video! Will definitely share this on social media!
Actually loved this video. While i can never work in the healthcare industry because im far too empathetic but things like this have always interested me.
As someone with eds and suspected pots, being informed about my conditions has been a game changer. I can adovcate for myself better, I can manage my symptoms better too.
100% agree
Hearing those medical costs I'm just sooo glad I live in Europe/Germany myself (left heart muscle