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Stats: 2,548,163 members, 5,868,648 topics. Date: Monday, 21 September 2020 at 07:58 AM
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 6:22pm On Apr 25, 2019|
Nelsonmoney:Thanks for the advise.
|Re: LIVING With SCD(Sickle Cell Disease). by oxypress: 6:27pm On Apr 25, 2019|
ismailaja:Oga, where did I say that priapism and errectile disfunction are the same?
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 6:40pm On Apr 25, 2019|
I started experiencing crisis 4 yrs ago and after the text result it happens to a ss. we are six and I'm the second child. I and my elder sister are the carriers of this disease.
I could remember growing up as a child I fell sick like every 2 months, constant headache,I got exhausted quickly and my father would ridicule how less of a man I am. I hated myself for a long time because I couldn't do what my mate were doing but those yrs there was no crisis until I turned 21. I first crisis happened on my birth month I mean how could I ever forget that day.
After that day it only happens once a year and that's every September but the tiredness and constant headache still occurs. so I didn't take it seriously I thought I would endure the pain since it happens once.
currently as I'm typing this I'm walking with the aid of clutches. it all happened very fast. I'm sorry I can't really typed. Well according to an orthopedist my left hip pelvic is broken due to infection coz by the disease. it was emotional for me that day because I'vent started and my world is crumbling before my eyes. I'm yet to live my dreams as if the complications is not enough I have to deal with hip challenges.
Is not easy but I'm starting my accept my reality.
|Re: LIVING With SCD(Sickle Cell Disease). by OtunbaBlack(m): 7:19pm On Apr 25, 2019|
I don’t know what this feels like bro but if you need a pal please text me on WhatsApp or drop your dial ( 0 eight 1 1 five 6 five 7 seven 5 nine)
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:00pm On Apr 25, 2019|
Nelsonmoney:being a warrior is truly hell and our experiences with it are quite different . I also walk with the aid if a walking stick at a time so I can say kind of know how you feel .
Nevertheless I like the fact that despite these challenges you still want to make something out of your life and I'm really proud of you :I'm sure your mum will be too.
You can do it bro.
We're all in this together.
|Re: LIVING With SCD(Sickle Cell Disease). by Tobichuks08: 10:54pm On Apr 25, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 8:19am On Apr 26, 2019|
[quote author=Fhunkhy1 post=77857703]being a warrior is truly hell and our experiences with it are quite different . I also walk with the aid if a walking stick at a time so I can say kind of know how you feel.
It will take more than this challenges to stop me. it definitely ain't gonna be nice and easy but I'll give life my best shot.
Thank you Fhunkhy, I believe I'll learn a lot from you.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:14am On Apr 26, 2019|
Tobichuks08:hello @Tobichuks08 . Reading your comment makes me wanna be a graduate asap .but then what next? Bro I'll advice you to start pressing all the buttons you have before your service year runs out. I'm saying this because the workforce,employers and economy isn't really smiling at warriors but I pray God will see us through.
God has got you bro. .
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:22am On Apr 26, 2019|
Sickle Cell Reflection.
As sickle cell warriors,it's our duty to spread awareness and let the world have a better view and understanding of it.We can only achieve this if we talk about our struggles and how it's like living with chronic pain.
Now it has come to my understanding that most sickle cell warriors often keep quiet about sickle cell because they are too ashamed of it or have constant fear of being stigmatized.Whenever they have an episode of pain they often distance themselves from their friends or families members until they are better.They usually come up with lies like "it's just malaria, a minor headache, or flu" etc.
I can understand from my experiences to why some warriors may want to keep quiet about their struggles from anyone,not everyone can understand and when we usually open up to others the reactions we receive is usually unpleasant.Fellow warriors if we want to eliminate all the myths and misconceptions that people have concerning Sickle cell,we need to talk about it.Keeping quiet and hiding our struggles won't spread the awareness,our family and friends will still be in the dark.Sickle cell can be prevented and this can only be done when people are well informed about it,so that they can be screened and know their genotype.
People also need to understand this,for us warriors that choose to share our stories about how it's like living with sickle cell,we don't discuss our health issues for pity, sympathy,or attention.I wish people knew that we talk about it because it's a huge part of our lives, whether we want it to be or not.We discuss it to help others who are dealing with the same hurldes and who are afraid to talk about their struggles.We do it TO INFORM.TO EDUCATE.To be the matter-of-fact.TO EXPLAIN.Not to get pitied, babied,or fawned down up or judged.
For us that choose to talk about sickle cell,we are the VOICE OF THE VOICELESS.
#Sickle cell is nothing to be ashamed of.
#Keep on spreading the awareness.
#Before you judge,think of the consequences and know the facts.
We can keep hiding our truth , people out there need to know what it is(you will be surprised to know how much people don't know about it,, some haven't even heard of it before) and that it can be prevented.
Good morning everyone.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by infostemcenter(f): 9:19pm On Apr 26, 2019|
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|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:16pm On Apr 27, 2019|
'You don't know your limit.' 'You've crossed your boundaries again.'
These and others like it are some of the statements that repel my hearing. Don't you think you are also crossing your limit by saying those words? I know you care, and just concern about me, but who sets those limits? Who defines those limitation? Are they for me to stay safe and be protected? To what extent?
I can say most of the decisions I have made in my life that has helped me are those ones that were said to be out of limits. From my choice to attend a boarding secondary School, even though I didn't spend more than a year there, it sharpened my horizon of life. When I made my choice known, a lot of mouth were quick to advise against it on how I was too young and fragile, like I was an egg that mustn't crack. For every crisis that occurred that year, someone was quick to judge my mom on how she made me overstepped my boundaries. Nobody considered what that child wanted and how happy those little things that were said to be off limits made the child.
My choice of discipline was another fight I had to win against limit. I was told how science class would be too stressful for me. How I was good in Maths and should go for accounting and how I can talk and argue, and law would be best for me.
My choice of institution was another challenge, then the course of study was like I was on a suicide mission to some. To others, it was like I just hate myself and the stress would be too much to bear. No one care much about what the girl want and what keeps her alive but just want her to live.
Then, I was told to concentrate on my studies and leave out distractions, not to cross my limits. No one bother to know if those distractions that were off limits are what keeps me sane in an insane world. If those are what brings fulfillment in a world threatening with sorrow and unhappiness.
The next time crisis comes knocking, there is someone waiting to throw it at my face on how I have crossed the limit again, but forget to tell of how crisis could crept in even in the sleep, or should we say sleeping is also off limits.
Whenever life throws its challenges and I have to move two steps backwards just so as to move a step forward, there's someone waiting to attribute it to my inability to stay within limits, but they forget to tell of how life is made of trough and crest and is meant to be a wave not a straight line.
Everyone has one or more advise to dish out on how I should live my life, on how I should live within the limit, like a bird caged in a cell, forgetting that even a bird deserves its freedom. If that line isn't crossed, you would never know if it's truly off limit.
Every experience comes with its lesson, for every of the limit I have crossed, I have learnt from it. Cage not that warrior child for those experiences make us stronger. It makes us who we are, survivors.
Limitation is of the mind. Sickle cell can't cage us in its cell, don't help it do that.
N.B.: I rarely regret what I do, what I regret are those things I fail to do, the opportunity cost, the forgone experience I could have had.
*© FAM* Adeyemi Fadeelat Mojisola.
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 5:11pm On Apr 28, 2019|
There was a time I was sick and my exams was fast approaching, I remembered how challenging it was for me but at that moment of pressure,my real self reveals to me. I was struggling but at same time I was determined to pass those exams. I did all I could but I failed one course so I had resit for it.
During those moment, my illness was an inspiration to me. I said to myself there people going through worst challenges of this life but they pull through so I'm not gonna allow this deter my dream of a beautiful end.
The only regret I have is the setback it has brought to me. I was supposed to be graduating this year and now it will take two more years.
As I said earlier It would take more than this disease to stop me.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:14pm On Apr 28, 2019|
Nelsonmoney:I love your fighting spirit Nelsonmoney. Don't feel too back at the setbacks,, they'll soon be gone. We'll all get through this by God's grace .
PS: I keeps getting mails that you're trying to send me a message. I dunno what it means but if you needed to talk or anything at all, here's my number
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:36am On May 03, 2019|
Good morning fellow warriors.
I hope we find this worth reading.
Biology says that after sexual intercourse, about 200 to 300 million sperms are deposited by d man, they all begin to swim upwards within the tract to meet with the ovum. Of the over 200 million that are deposited, only 300 to 500 actually reach the site( others get tired on the way because it is not a small race). And of the 300 that manage to reach the ovum(egg), only one fertilizes the egg, and in this case the Winning One was YOU. Have u ever thought about this? You ran a race without your eyes and you won, you ran without education and you won, you ran without a certificate and you won, you ran without help.....and you won. What makes you think you will lose now? Now that you have both eyes and legs, now that you have the knowledge of God's word, now that you have a plan, a dream and a vision. Beloved, you didnt give up on day one, you can't give up now, giving up now is an insult to your creator. It doesn't matter what you see now, take it as a challenge, always remember that you WON from the womb. Always be Grateful to God no matter what. Better days ahead.... You'll all smile soon, let's keep hope alive, no man can conquer you, be bold like lion after your secret prayer time. Testimony is our portion.
Great *Warriors* almighty God is our Protector, Father and Healer
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 8:09am On May 03, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 4:46am On May 08, 2019|
Good morning my people.
How was your night?
I'm really sorry to have left you hanging over last couple of days without any posts.please accept my humble and sincere apologies.
I've been so entwined with school work(exams are approaching) that I rarely have time for myself, my hobby(beadmaking) is also getting a huge part of my time but I will make it up to you very soon guys.
I'm really sorry.
Probably you're wondering why I'm up so early, I hate to read ni o..
Thanks for reading .
Peace ✌ ✌ ✌
1 Like 1 Share
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:49am On May 27, 2019|
�� I was born with sickle cell, I am human
��I don't possess enough physical strength like others, doesn't make me worthless.
�� Sometimes I fall sick more often than others, I am still human
�� During sickness I writhe in pain, it doesn't make me a weakling
�� I wanna be loved and accepted the way I am, it's cause I'm human.
�� Sometimes I can't do those things my mates do, it doesn't mean I'm useless.
�� I might spend more time in the hospital during the time you've known me, it doesn't make hospital my home
�� That you know I am sickle cell shouldn't make you segregate me. I still wanna be in the circle.
�� Pardon me if I can't dance in rain with you or walk you to the market like you always want. My body just cannot take the stress
�� Sometimes we cannot always meet the 8am lectures or come to class everyday. We ain't lazy out body just needs some rest.
�� Because we can't play football with others doesn't mean you should rub it in out faces. We are humans too.
�� If by chance you get to see us on our darkest days, when we're in pains/crisis. Let it not change your feelings or love for us. It ain't our choice.
Ultimately we just wanna be loved not pitied. We're stronger than most people can imagine, we are warriors we fight everyday for our health in ways you cannot imagine.
Safe the future generation from the trauma of been SS. From the stigmatization of friends and society. From reoccurring heartbreaks just because they are SS. From the cast of laziness, attention seeker, pretender, people cast on SS people.
Just know your genotype before engaging on marriage contract, before walking down the aisle with that beautiful lady or handsome man.
That's all you have to do.
Good morning Fellas.
This is to let y'all know that I'm back. I finished exams on Friday so I'll be regularly here again till further notice. I hope I meet you well.
How have you been?
Or is anyone in a depressive state? Then hit me up on 08143505458,,I'm always here for you.
Have a great week ahead �
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:21pm On May 28, 2019|
When I retire to bed every evening ruminating over life, I discovered that:
Sometimes, to succeed in life you need ENEMIES.... Yes!!!
You need people who will mock you, so that you can run to God.
You need people who will try to intimidate you, so that you can be courageous.
You need people who will say "NO" so that you can learn how to be independent...I mean how to do it yourself.
You need people who will disappoint you so that you can put all your trust in God alone.
You need people who will work towards you loosing that job, so that you can start your own big business.
You need people who will sell your 'Joseph' so that 'you' can get to Egypt and be a Prime Minister in a strange land of captivity.
You need a cruel landlord, so that you won't be too comfortable in someone else's house, then you can build your own house on time.
But sometimes, when we are disappointed, we feel very bad and we tend to remain on that spot. Not knowing that the end-point of disappointment is the beginning of your accomplishments.
Understand this, "that every disappointment you once had came with a blessing!" However, it is not everyone that partakes in this blessing that I'm talking about.
You cannot see a new OPEN door while you are still putting all your attention, time and energy in trying to force the closed one to open.
And again I say, "No disappointment can ever come without an attached blessing!"
So, when the disappointment come, thank God for it and tell "HIM" to open your eyes to see the new blessing that HE has for you!
Disappointment is PHASE 1 while accomplishment is PHASE 2. I doubt if one can jump the protocols.
That is why it is called BREAKTHROUGH Something must BREAK so that you can go THROUGH!
Encourage someone today....you are lifted.
|Re: LIVING With SCD(Sickle Cell Disease). by NAJALYN: 5:16pm On May 29, 2019|
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|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 5:12pm On May 30, 2019|
Good Day everyone, please bear with my inconsistency for now . We'll be back and better soon.
Too many people are feeding off of what didn’t work out: reliving the disappointments, the failures, the bad breaks. When they wake up, the first thing they think about are the hurts, the loss, the people that did them wrong. You can’t put poison in your spirit and live a faith-filled life. Let it go; that’s over and done.
Have A Blessed Day.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:52pm On Jun 03, 2019|
IGNORANCE IN HIGH PLACES
How can one be so knowledgeable and still be so naive?
How can one be so educated and still be so ignorant?
How can one be so full of wisdom and still be dumb?
The table is one too big for me to shake, because some of those on it are professionals in their field, but I just have to shake it and even break it so that they might get down and let's destroy the table together.
The table is about the myths with sickle cell. As a person, I have listened and heard so many myths from different people of different calibre from different directions that I don't even know how to tackle it or where to start from. It's pardonable when some of these myths are coming from the lower class of the society, those called illiterate, but when it's coming from the society high class, from the University community, then it becomes highly offensive. From the university undergraduate student, to the administrative/non-academic staff, to even the big lecturers with the PhD in their portfolios, the level of ignorance is sickening. But then it's still pardonable when you don't know but willing to know, we can't all know it all, but it becomes a capital offense when you pride yourself in your ignorance and rub it on others.
I have had different encounters with these people that made it seems we can't break the sickle cycle any time soon. That's because with no right information in circulation, we will only be moving in a circle with no way out.
From the undergraduate whose only knowledge about SCD was that it's the rich that gives birth to them, to a roommate that felt all she needed to know on genotyping was that she's prone to malaria, hence she's AA and good to go, (isn't that still funny in this age), to that lecturer with a PhD in science oriented course (white house) who used derogatory words for a friend, saying it's a pity she's brilliant but people like her don't go to school because they won't cope and it's a waste of parents' funds, making reference to death et al, or should I mention the one who thought once a warrior crosses a certain age (early twenties), then it's all smooth and fine, implying we could wait till then before taking up strenous activities like coming to the university.
In between all the different scenarios I have experienced or heard of, let me just share one or two in details.
One happened on one of my occasional admission at the university health center, a random conversation about having sickle cell offsprings came up, and we have our oversabi woman (an 'educated' administrative staff) who thought and communicated it out that sickle cell offspring can only occur in the fourth pregnancy. The problem isn't in her thoughts, but the level of confidence she used to communicate it. She went to the extent of telling us that if it happened before the fourth child, the woman must have had some abortions/miscarriages in the past. (I fainted and woke up) That was like one of the most unhilarious myth I have had to listen to. Her argument was top notch that nothing anyone else said was able to convince her. Even giving her real life scenarios couldn't as she believed you don't know what those women (mothers of warriors) had done in the past. Quite unbelievable right? Imagine such woman having a sister in law or daughter in law who have a warrior as a first or second child. Obviously she had gotten the simple Genetic cross matching taught in biology twisted. She failed to realize that the cross matching is the occurrence in every pregnancy and doesn't follow such pattern.
I couldn't even partake in the conversation that day because I couldn't afford to waste my 1ml of opioid which was to relieve me from my pain in a fruitless argument with her. Her voice was at its peak and highly confidence in ignorance.
Funny how these are the same set of people the less educated in the community will reach out to when they need information on issues like this, hoping to get the right information from them. How unfortunate! Some of these people are one of the most educated in their lineage/family and issues as these would be refer to them and they would most likely have the final say. How then can we stop stigmatization, discrimination and even break the sickle cycle when they themselves don't know, and they do not know that they don't know.
It's not a crime not to know, but it's advisable to just keep quiet and learn instead of priding in ignorance and confusing the populace.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:56am On Jun 07, 2019|
Good morning everyone.
Very sorry for the silence. Been busy trying to get back in shape and preparing for a 6 week clinical posting.
So I have been pondering on something and I'll like to throw it out to you guys .
I noticed I've had insomnia(inability to sleep) for most of my life and I still do,, so my QUESTION is for fellow warriors or relatives of warriors who may be passing by
" Do YOU SUFFER FROM INSOMNIA "
" SINCE WHEN HAS IT BEEN HAPPENING "
" HOW MANY HOURS OF SLEEP DO YOU HAVE AT NIGHT "
" Do YOU HAVE TO INDUCE SLEEP ON WORSE DAYS "
For me I hardly have 5 hours of sleep at night mostly
between 2 am and 7am.
please I need your feedbacks.
PEACE ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:50am On Jun 18, 2019|
Truth be told I'm really sad about not getting any feedback from y'all. It's just my way of making the group as interactive as possible but it appears I'm the only one who wants that..
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:00pm On Jun 19, 2019|
*World Sickle cell day 2019*
What is Sickle Cell Disease?
Sickle cell disease or sickle cell anaemia is an inherited form of anaemia in which red blood cells are not able to carry adequate oxygen throughout the body. Let us tell you that in normal condition red blood cells are flexible and round. They move easily in the blood vessels. But in sickle cell disease or anaemia, the red blood cells become rigid, sticky and become like sickle shape or crescent moon.
As a result these irregular shaped cells get stuck in small blood vessels, which slow the flow of blood or block blood flow and reduce oxygen to reach the parts of the body.
World Sickle Cell Day: History
World Sickle Cell Day was organised by United Nation as General Assembly in 2008 to raise the awareness about the sickle cell disease and the pain that people go throughout the life.
On 19 June, 2009, it was first time celebrated. Nowadays, Sickle cell have become the most prevalent genetic disease that spread all around the world.
*Every day more than 1000 babies are taking birth with sickle cell disease in the Africa and getting die up to five years of age*
*In the United States more than 90,000 to 100,000 people are affected with this disease*
*In countries like India, Saudi Arabia, Turkey, Arabic peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece etc. people are suffering from sickle cell anaemia*
*No doubt it is big health issue which is to be resolved or to take control over it for healthy future of the nation. Due to Sickle Cell disease, the premature child death has been raised in the world*
Why World Sickle Cell Day is observed?
*To raise awareness about sickle cell disease and support people by educating them*
*For the screening of patients, worldwide several health programs are organised*
*It is necessary for the new parents to get aware about the immunisations and its comprehensive care packages*
- To inform people about the sickle cell anaemia as a major health issue.
- People living in any part of the world should be aware about sickle cell disease.
*The disease is described as sickle because the red blood cells are sickle or crescent-shaped and anaemia means lack of blood*
*Sickle cell anaemia disease affects millions of people around the world*
*Sickle cell anaemia disease is hereditary and not contagious*
*There is no definitive cure for sickle cell anaemia*
Pre-marital Screening:Intending couples are strongly adviced to get a medical Screening to know their Genotypes.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:08pm On Jun 23, 2019|
GOOD evening everyone. Happy ☀ Sunday and happy new week.
I wish us all a crisis-free weekend.
� � � � � � � �
*FREEDOM FOR FIGHTERS*
We see the tears in your eye.
We know the pain hidden in your pride.
We see your falls, and we know your hurts are
too heavy to bear that
you curse the day of your
But this is our hand
reaching out to you
helping you to fight the fears of many years.
Today, we wish that you hope on,
'cause there's love
at the other side
there's peace at the end
when you realise that we all are champions
and will be free at last!
|Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 7:08pm On Jun 23, 2019|
Hope we can make it a knowledge base that would be helpful to both warriors and care givers alike.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:19pm On Jun 23, 2019|
Thanks for the contribution Sir /Ma.
It is knowledge based as well as a support system kind of. Inputs are welcome from anyone as long as it related to Sickle cell disease..
|Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 11:33pm On Jun 23, 2019|
Start by making adjustments to your Diet and Lifestyle.
Take 4 sachets of water in the morning another 4 in the afternoon and then 2 sachets before dinner time.
It is advisable that you have dinner latest 6pm. Take Aloe vera juice with honey. This will help you sleep naturally.
If the above is not adequate for you then include:
Chelated Cal- Mag, and Tre-en-en.
You should soon be complaining of too much sleep.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:29pm On Jun 25, 2019|
I recently included tre-en-en to my drugs, not up to a week now and I can see changes already.
As for dinner,, 6pm can't work for me. As a student, I get back from my classes around 6 and before I get to have dinner might be around 9 but lately I've been trying hard to have dinner around 7pm.
And the aleovera honey thingy can totally not work. Mehn that shit is bitter. I shu not lie ehn,, I can't even think of trying it
Thanks for the hints Sir /MA, they're highly valued..
|Re: LIVING With SCD(Sickle Cell Disease). by oluplus(m): 12:06am On Jun 26, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 8:31pm On Jun 27, 2019|
Nice to hear your amount of sleep has improved.
Aloevera plus from Neolife taste like champagne. And I even suggested taking with honey just in case you have sweet taste buds.
Anyways "Health is Wealth " so it is expected that we make some sacrifices to enjoy long-term well being.
Eating by 7pm is still fine, to shutdown 9/10pm till 5am. Also add some nap during break/launch time. This with daily consumption of Tre-en-en is a massive immune booster.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:15pm On Jun 30, 2019|
Hi guys! If you won't mind the data and the time, kindly watch this Vlog by Ope here:
I was so teary by the time I finished watching the video because I could totally relate with her and I know you would too .
If the link doesn't go through ,just search for "faari by sisi Ope" on YouTube and click on the most recent video there.
Happy Sunday everybody �
Peace � � �
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