Ironmouse on her Big Progress in her Medical Condition
Summary
TLDRIn this engaging conversation, the speaker shares their experience of a 'subathon' where they were live for a month straight, including sleeping on stream to meet the challenge. They discuss their struggle with a rare immune deficiency disease, CVID, which has significantly impacted their life, including their ability to sit and their need for donated plasma weekly. Despite the challenges, they express gratitude for the progress they've made in their health journey, now being more self-sufficient and living a more normal life, with hopes of one day being able to meet new people and go outside.
Takeaways
- 🎥 The speaker participated in a 'subathon', streaming live for an entire month straight.
- 😴 They managed to sleep during the stream, which was the only way they could get 8 hours of sleep.
- 🛏️ The speaker had their setup in bed, allowing them to sleep comfortably while being tracked on stream.
- 🚶 They have improved their health to the point where they can now walk and even sit in a gaming chair.
- 🤒 The speaker has an immune deficiency disease called CVID, which makes them susceptible to getting sick from other people's germs.
- 🏠 Due to their condition, they have been living with their parents and have had limited social interactions.
- 💉 They receive donated plasma weekly to compensate for their body's inability to produce antibodies.
- 📈 The frequency of plasma treatments has increased from monthly to weekly, indicating a worsening condition but also improved access to medical care.
- 💪 Despite the challenges, the speaker has become more self-sufficient and can take care of themselves better.
- 🌱 There is a sense of hope for the future, with the speaker looking forward to the day they can meet people and go outside.
- 🤗 The speaker expresses gratitude for the support and normalcy they have gained through their health journey.
Q & A
What was the nature of the 'subathon' mentioned in the script?
-The 'subathon' referred to in the script was a streaming marathon where the person was live for a month straight, aiming to achieve a certain number of subscribers or donations.
How did the person manage to sleep during the subathon?
-The person slept in front of their computer with their tracking on, allowing them to get 8 hours of sleep while still being visible to the audience.
What health condition does the person in the script have?
-The person has an immune deficiency disease called CVID (Common Variable Immunodeficiency), which makes them susceptible to infections from other people's germs.
How has CVID affected the person's ability to interact with others?
-Due to CVID, the person has to avoid being around people to prevent getting sick, which has limited their social interactions.
What was the person's initial streaming setup like?
-Initially, the person had to stream while lying down because of their health condition and was unable to sit in a gaming chair.
How has the person's health journey been since they started streaming?
-The person's health journey has seen significant progress since they started streaming, including being able to sit in a gaming chair and walk, which was not possible earlier.
What is the treatment the person receives for their CVID?
-The person receives donated plasma every week, as their body does not produce antibodies to fight infections.
How has the frequency of the person's plasma treatments changed over time?
-Initially, the person received plasma treatments every month, which increased to every two weeks, and now it's every week due to better access to medical care.
What impact has the person's health condition had on their family life?
-The person had to live with their parents and avoid close contact with them, including hugging, due to the risk of infection.
What is the current living situation of the person in the script?
-The person still lives with their parents but has become more self-sufficient and can take care of themselves better.
What is the person's hope for the future regarding their health condition?
-The person hopes to be able to go outside and meet people one day, which has been challenging due to their CVID.
Outlines
😴 Streaming and Sleep: A Subathon Experience
The speaker discusses a subathon where they streamed continuously for a month, managing to sleep a total of 8 hours by sleeping on stream. They describe the setup that allowed them to sleep comfortably while being tracked, revealing that they slept in front of their computer. The conversation then shifts to the speaker's health condition, an immune deficiency disease called CVID, which prevents them from being around people due to the risk of catching germs.
😷 Living with CVID: Health Journey and Progress
The speaker elaborates on their struggle with CVID, an immune deficiency that has significantly impacted their life. They mention that it took them a long time to be diagnosed and that their health issues have improved since they started streaming. They now have the ability to sit in a gaming chair and are on oxygen, which was not possible initially. The speaker also discusses the treatments they receive, including donated plasma every week to help fight infections, and how their health has gradually improved, allowing them to live a more normal life despite the condition.
🏠 Support System and Independence
The conversation continues with the speaker discussing their living situation and the support they receive from their parents, who have been taking care of them due to their health condition. They express their desire for independence and self-sufficiency, mentioning that they are now more capable of taking care of themselves. The speaker also talks about the challenges they faced during the COVID-19 pandemic, such as not being able to hug their parents or be around them, and their hope for the future to be able to meet and interact with people outside their immediate family.
Mindmap
Keywords
💡Subathon
💡Sleeping on stream
💡Immune deficiency disease
💡Oxygen
💡Health journey
💡Donated plasma
💡Medical care
💡Self-sufficiency
💡Social interaction
💡Streaming setup
💡Gaming chair
Highlights
Streamer did a subathon, being live for 1 month straight.
Managed to get 8 hours of sleep by sleeping on stream.
Slept in front of the computer with tracking on.
Had a setup in bed for easy access during streaming.
Previously unable to walk due to health issues.
Streamer has an immune deficiency disease called CVID.
CVID makes the streamer susceptible to getting sick from others' germs.
Streamer's health condition was unknown for a long time, causing frequent sickness.
Now able to sit in a gaming chair, previously had to stream lying down.
Health journey has been ongoing since the streamer started streaming.
Took 7 years to reach the current state of health.
Now able to meet new people and receive donated plasma.
Body doesn't make antibodies, so relies on donated plasma every week.
Medical care was unaffordable in the past, but now treatments are on time.
Despite still needing weekly plasma, the streamer can now live more normally.
Expressed hope to go outside and meet people one day.
During COVID, couldn't even hug parents or be around them.
Now more self-sufficient and able to take care of themselves.
Transcripts
46 have you done 40 hours before yeah I
did a subathon I was live for 1 month
straight did you at least sleep on
stream I did that's how I got 8 hours of
sleep it was the only way I could sleep
cuz everybody was watching me sleep oh
okay okay so that's how it work I
literally slept in front of my computer
like with my tracking on and everything
is that even comfortable like sleeping
on in in front of your computer what the
[ __ ] I'm in my bed Gerard oh what oh you
have your setup on your oh that's nice
at least yeah easy EAS of access I used
not be able to walk and stuff but now I
can walk damn okay okay so now I'm
worried like what the hell is your
sickness holy [ __ ] I I don't oh what the
[ __ ] it's like I'm slowly trying to okay
so so slowly unraveling like what the
hell n have an immune deficiency disease
called cvid that uh I cannot be around
people because uh their germs make me
sick and be around people oh
[Laughter]
that what what a what God damn I didn't
know you had that because I I because I
didn't know I I I didn't know for a long
time that I had it so I kept getting
sick growing up and I got sick so much
that it really like [ __ ] me up in a
lot of ways and um it doesn't sound like
you're sick you sound like you sound so
normal well thank you thank you very
much I appreciate you yeah but I I
thought I I dude I thought thought you
were in a gaming
chair I can actually sit in a gaming
chair now I never used to be able to sit
in a chair because of my uh so like I'm
like on oxygen and stuff so like I
couldn't like breathe sitting up I used
to I used to stream laying down oh when
I first started streaming and it's
taking me like this whole like my health
Journey has been since I started
streaming so like it Tak me 7even years
to get to this point oh at least there's
progress there is progress I can
around and St yeah can you at least meet
new people like like back I'm what about
now yeah cuz like I I have to get
donated plasma so I get like donated
plasma from other people because my body
doesn't make antibodies to fight against
infections and stuff so I get donated
plasma quite uh every two weeks not two
weeks every week sorry it used to be
every two weeks now it's every week
oh so did it wait so it got a did did
did it get worse because it's like a
week now right well uh yeah it did it
did get worse but but you're getting
better that doesn't make any sense B
what the [ __ ] are you doing to our Mouse
what the [ __ ] that's [ __ ] well I I
when I first started it was every month
and then it's slowly been going down and
now I'm that every week but it's only
because it's only because I used to not
be able to afford medical care that's
why but now I can afford Medical Care
and I get my meds on time and I'm I get
my my treatments on time and
everything's on time and everything's
good and I'm and I'm doing better even
though even though I still have to get
it every week I can actually like live
like a person now aw that's nice yeah
it's good can't wait for the day that
you actually go outside man one day I
hope so I really want to be able to meet
people it was hard it was hard during Co
cuz I couldn't like could even like hug
my parents and stuff or like be around
them yeah and I live with my par cuz
they were like taking care of me so it
was kind of like uh one of those things
are wait so who's taking care of you now
like is it just by yourself I still live
with my parents now and oh but like I'm
more self-sufficient now and I could
like take care of myself more now oh I
see I see well that's nice yeah
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