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This is the third episode of our series about hidradenitis,
and today I’m going to talk about how to deal with the pain,
but I’ll have to explain a little for those who don’t have it, right?
Like, what it feels to live with so much pain everyday of your life?
I’ve already mentioned that my case,
for you to get an idea,
is not even one of the most severe cases of hidradenitis.
And you’ve seen images and you’ve seen how my body, it is… “a little bit injured” by the disease, right?
But for you to have an idea, like, here in Brazil, I mean, not here in Brazil, in the world, right?
There are people on the wheelchair because of hidradenitis,
there are people who have to retire because they can’t work…
Because of the pain they feel…
So I’d like to try to explain a little to you,
in my “way”, of course,
how it is to deal with so much pain in the everyday life.
“Ouch, ouch, ouch! Ouch! Ouch!”
Today is a great day for me to talk about this, because I’m… “a little bit injured”.
The word in this video will be “injured”, because I really am, I feel a lot of pain today. “Ouch…”
Well, to begin with, you know that I have several lesions in my armpits, right?
And when I have an abscess in my armpit, which is an inflammation,
I can’t even raise my arms to thank for life, you know, otherwise…
I don’t lower it more, guys, I can’t move my arms, that’s it… usually my living position, wait a second…
This Instagram doesn’t show, which is like, being able to move my limbs.
My living position is this one, right?
Everyone knows, everyone knows. Including my friends,
they usually say - you make a lot of fun of me because of that - that I look like a “little dinosaur”, right?
Here it is, a Tyrannosaurus rex little hand.
I even love to mimic.
Everyone says it doesn’t look like a dinosaur.
With an inflammation in my armpit, after taking a shower, I spend so much time like this,
without being able to lower my arm, that I start walking around the house, and my girlfriend starts singing:
“para para pa pa pa pa, para para p... é um morto muito louco [a Brazilian song]”
I have to laugh, right, what am I supposed to do?
But you can imagine how it hurts, right?! Not being able to lower or raise your arm.
You’ve already seen images of my ***, how they look like,
the upper part, a little bit up, I never show my nipples, because it’s very polemic, right,
but they also have lots of lesions.
Here in the chest I have a little and I’ve cried a lot because of this,
and I think the worst part of having abscesses in my *** is not being able to hug someone.
I’m very warm, I’m very affectionate,
and not being able to hug my family, my friends, is very complicated for me , you know,
not being able to hug my fans, “the crazy girl”.
Worse than not being able to wear a bra, which is something I can’t do,
most of my days I feel a lot of pain here,
so the bra really is, feminist from birth, got it?
Burning bras even before… it’s impossible.
Another thing that breast pain causes is that I walk like that,
in order to relieve some of the pressure that the breast makes in the lesion.
So my… guys, the bullying starts with friendship, right?
Because my friends also make a lot of fun of me because I walk like that, right?
I little humpback, but this is whenever I have pain.
When someone comes to hug me, by the way, the viewers of this channel always ask:
“Can I give you a hug?”, “did I hurt you?”, and I think it’s the most beautiful thing.
But whenever someone comes to hug me, or somehow comes towards me, I do like this.
You’ve already noticed, haven’t you Cecília?
I always put my hand to move away, because here it’s very hard to touch me like that.
By the way, just the memory, I think the worst part is not hugging.
Not being able to sleep face down.
Because this is something I like, to sleep face down, but I can’t.
By the way, I would like to tell you that during this series, I’m going to interview a doctor.
I haven’t chosen yet who the interviewee is going to be, but it’s a dermatologist.
I’m going to ask my questions about hidradenitis, and please do the same,
comment here what you want me to approach in the interview with the doctor
so that we may have our questions answered.
Talking about pain again… oh the groin, you can’t even imagine
what is the main difficulty for those who have an inflamed cyst in the groin.
I’m going to tell you how our groin, and our little toe, people say, are important for us to walk.
People say that if you lose a toe, you lose your balance,
but I haven’t checked that with any doctors.
But walking really is very hard. Sometimes I stay in bed because I can’t move.
For instance, today Cecília is lifting me up from everywhere,
Herbet is lifting me up from everywhere because I can’t move my leg.
Fortunately, in most cases I don't stay in bed, but it’s very hard for me to walk.
So I have great news for you who are watching me.
You can’t notice that in the videos, because this is all an illusion, right?
But yes, dear viewers, I do limp. And I get very happy,
because really,
between staying in bed feeling such a hard pain that I can’t move and walking limping…
Look how life is, I get very happy to be able to walk around limping and slowly but surely, you know?
Yep, that’s why my nickname among my friends is “Jess Turtle” – turtle Jessica.
It’s because I drive very slowly, and because I walk…
Yep guys, you got it, right?! The scheme around here is this: very slowly.
But we go on. Do we get a little later? Of course, but we enjoy more the view.
Ok, I can’t wear underwear either. How did I solve this dilemma?
Nowadays, I wear boxer briefs, those that are like boxer shorts that goes down the legs,
so it doesn’t bother. Because the *** get exactly where cysts are more inflamed.
I can’t stoop down.
I want to take a look at the boxer briefs that are in the lower shelf,
but I can’t,
because I have an inflamed cyst in my groin; seriously, it looks like, I swear, a healthy person,
who does not have any pains in their body,
cannot imagine how all these little parts are important to make us function.
I can’t have such pain in… here, as it’s impossible to live.
The issue of stooping down, guys, it’s terrible.
Nowadays, for instance, wearing the shoes,
grabbing my clothes that were on the bathroom floor after I took them off to take a shower...
They stay on the floor, and who said I’m able to grab them again? I can, but it takes about five minutes…
And the part I don’t like is that, socket.
Guys, all the sockets at the bottom.
The battery is over, who says I’m able to charge the cell phone?
I can’t be without the supervision of an adult.
The snickers issue and the cell phone issue are like the thousandth thing of the day that I wasn’t able to do.
Because for you to stoop down, there, to get the teapot
to prepare coffee for your breakfast, you are not able to do that, got it?
Let alone for people who have children, can you imagine?!
I’m talking more to Cecília than to you guys today. Come back.
Can you imagine people who have children, guys?
I don’t want to talk about the stuff we do to put children in the world,
because if the world depended on people with inflamed stuff in the groin to be settled,
the human race would end, really, today. It’s impossible, it’s just impossible.
And talking about that, can you imagine what is it like to wake up with the great odor of pus on your pillow?
It’s impossible not to talk about this. Secretions from hidradenitis really stink,
and they ruin the personal and love life of the person with hidradenitis,
because it’s too embarrassing.
You feel very embarrassed of what your body is doing
and it’s like, you even talk to it and say:
“So, body, I have a date tomorrow, and maybe we’ll have a physical contact, so please give a little…”
Sure, it will get an inflammation, the pus will come out, got it? Right there.
This one, these ones in my head, if you haven’t watched yet, our first episode
I’ll explain, it’s not common for hidradenitis.
it’s an ectopic region, out of the environment where hidradenitis occurs…
And the bad thing about that is that I can only sleep on this side, like this.
I can’t put my head right here, look, or I have to sleep in a wonderful way,
which is like, a jerry-rig that I do, that I lean all the parts and leave my head up.
I wake up with a backache...
And it’s also amazing. When we have a lesion in our body, we try to protect it,
like, we make it more comfortable, but then… we end up all crooked.
We get a backache, an arm pain, pain… oh my, right here…
I’m going to tell you: when I started dating my girlfriend, it was something...
I got really embarrassed, can you imagine, saying this:
“Sweetheart, this is what happens, some pus comes out, it’s stinky. Do you still love me, you know?” She said yes.
That’s the good part, guys, for people who have hidradenitis, it’s like that:
The person who loves you will love you the way you are, got it? Even with hidradenitis.
All this pain, guys, may limit us a lot physically, but the worst part is the psychological issue.
Before everything, if you are in a lot of pain, look for a doctor, because your pain may be relieved, you know?
Really, officially, it’s not good to feel such pain…
But we know how skin inflammation is, right? Sometimes nothing works out.
You take everything, everything that’s available in medicine, and you still feel pain.
So, if you haven’t found a doctor yet,
you haven’t found a therapy yet, or if you are being treated, but you still have pain,
here is the most valuable tip.
Yep, I learned with a Jair Oliveira’s song, Jair Rodrigues’ son, Jairzinho, so many Jairs, right?!
The tip is: you go, you may go. Got it? You leave… no, I’m kidding.
It’s from his song that says exactly:
“I make fun of it, darling, so that it doesn’t make fun of me”, got it?
Whenever I can, I laugh at this disease. Watch out.
When I arrive at a friend’s house or at a restaurant,
if you have a lot of pain in your butt, you just have to try all the chairs, simple as that.
If you are still ashamed to talk about hidradenitis or if you don’t have too much intimacy with people,
you may even pretend that you are a super eccentric person, you know?
“I loved your house but I’m really, I don’t know if you’ve noticed, that I took a look at every corner?”
“It’s just that I’m making homophotosynthesis.”
“Homophotosynthesis. Which is the human photosynthesis,
so you have to check where the best lightness comes from,
like, you know, where is the best lightness here?”
- Metal? No, I think it’s here, I feel it comes more here! Here, look, light, right?
- Like this? - Oh, right! Great, what do you think?
- Great! - It’s great, great?
And when you have breast pain and you’re not able to hug your friends,
guys,
it’s a great opportunity to train hand touch!
Seriously, why did we stop doing that after school? It’s the best way to say hi!
When you have pain in your armpit, in your armhole, you know?
And you’re not able to move your arm, guys, you just get a sling, ok?
And use your creativity to tell the story about your new broken arm.
“A ghost pushed me”.
“I was hit by a polar bear… in Brazil, I know”.
“I was in the airport, when suddenly a bunch of body guards
and a woman with a very large bag, wearing sunglasses passed by me…
and she fell over me, she was wearing high heels,
then when I saw, I was there, spread-eagled on the floor, and she walked away!
When I saw her, it was Alicia Keys, I didn’t even believe that”.
“I was playing basketball”.
If you have groin pain and you’re limping, darling, the world is your catwalk!
“Light on the catwalk, here she comes”.
“Is that right? Is it?”
“The new Gorda de Boa is beautiful, let her in, she’s beautiful, let her in, she’s beautiful…”
“The new Gorda de Boa."
- Pause. - All right, Cecília.
Friends, seriously, we may take as much painkillers, anti-inflammatories,
everything that’s available from medicine,
but there’s a small wound from hidradenitis that it’s not on our skin that it hurts, right?!
It’s inside, there, really deep in our souls.
This wound, the only medicine that’s really effective,
internationally proven, approved by ANVISA [National Health Surveillance Agency],
is to know how to laugh…
It’s looking at this disease and say:
“Today you’re not going to defeat me. Today I’ve chosen to have a nice day, even with so much pain”.
It’s hard, it’s a daily battle, but that’s what we do.
Guys, in the next episode of the series you will roll about, with wonderful women,
who have other types of realities, other stories,
but who also have stories related to the skin, because it’s really embarrassing, to live like us.
And we’re going to talk to them next week. You guys wait anxiously, because I’m also anxious,
it’s going to be great.
If you enjoy it, please like it, comment what you think, subscribe to Gorda de Boa...
And if you have any questions about what is hidradenitis, about what this disease does,
you just have to go to Minha Vida website, ok, and read about hidradenitis. You can find everything there.
I think that’s it for today.
How to deal with the pain?
Making fun of it!
- Remember that I was laughing, it was very funny. - It was funny.
- Cecília, seriously, laugh!
- It’s finishing! - Oh my God, go. Finish it.