Unfortunately I’m yet to meet someone who says they believe their pain is managed well. Maybe things are different in America. In the U.K. they say “you have to use your mind to be able to do normal things” as if you can imagine the pain away, and don’t give you any adequate form of medication. It’s so sad how many people are silently suffering because no one will sign a prescription for the people who have exhausted all of the non medicinal forms of treatment.

​@J Nine- actually it is possible, look up hypnobirthing. But it's hard and takes lots of practice. You do feel some pain but it's much much less. Women who have normal non risky pregnancies are the perfect candidate to do hypnobirthing for their delivery and when they feel less pain they're able to deliver a baby without intervention/ being induced/ epidural. Using painkillers is fine, but people don't realize that using epidural increases their chance of a c section but 33%! Moving around the room and gravity help bring the baby out and helps manage the pain, it's actually more painful to stay in bed on the back working against gravity. Anyways I was able to do it 3 times (the first time I needed laughing gas to help calm my nerves) and I recommend it because recovery is much faster! I was up and walking right away!

@@naddee19 that person above said nothing about pregnancy whatsoever

@@naddee19 that isn’t going to help chronic pain… we’re talking about lifelong chronic pain.

@@jessH090 they were able to somewhat manage my mom’s pain when she had cancer… for a while they managed it so bad that she was overdosed and shaking and shaking would cause her pain. Finally a different hospital got her stabilized and she was coherent and not screaming constantly anymore… but we do NOT live in the US.

Huhu

Yes I agree ❤

Modesty Sin and Gospel Cursing using Gods name in vain and trusting in God 1 Samuel 12:24 ESV Only fear the Lord and serve him faithfully with all your heart. For consider what great things he has done for you. 1 Corinthians 10:31 ESV So, whether you eat or drink, or whatever you do, do all to the glory of God Romans 5:8 ESV But God shows his love for us in that while we were still sinners, Christ died for us. Galatians 5:22-23 Open menu New International Version Open menu 22 But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law 1 Timothy 2:9-10 Likewise also that women should adorn themselves in respectable apparel, with modesty and self-control, not with braided hair and gold or pearls or costly attire, but with what is proper for women who profess godliness-with good works. All of 1 Timothy 2 is talking about spiritual service to God and conducting one's self in doing so. Verse 9 isn't saying that women should never dress nicely. It is saying that a woman should be seen for the works they are doing for God, not trying to draw attention by what they are wearing. Sin Galatians 5:19-21 ESV Now the works of the flesh are evident: sexual immorality, impurity, sensuality, idolatry, sorcery, enmity, strife, jealousy, fits of anger, rivalries, dissensions, divisions, envy, drunkenness, orgies, and things like these. I warn you, as I warned you before, that those who do such things will not inherit the kingdom of God. Mark 7:20-23 ESV And he said, “What comes out of a person is what defiles him. For from within, out of the heart of man, come evil thoughts, sexual immorality, theft, murder, adultery, coveting, wickedness, deceit, sensuality, envy, slander, pride, foolishness. All these evil things come from within, and they defile a person.” 1 Corinthians 6:9-10 ESV Or do you not know that the unrighteous will not inherit the kingdom of God? Do not be deceived: neither the sexually immoral, nor idolaters, nor adulterers, nor men who practice homosexuality, nor thieves, nor the greedy, nor drunkards, nor revilers, nor swindlers will inherit the kingdom of God. James 4:17 ESV So whoever knows the right thing to do and fails to do it, for him it is sin. Using Profanity Colossians 3:8 ESV / But now you must put them all away: anger, wrath, malice, slander, and obscene talk from your mouth. Ephesians 4:29 ESV Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear. Leviticus 19:12 ESV You shall not swear by my name falsely, and so profane the name of your God: I am the Lord. Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight. (Proverbs 3:5-6, New International Version)

Yup! Like allergies. Your body is like "ate a peanut? Time to die!"

So True our body really turns on us no matter how we take care of it

I actually was thinking that. When she said "When I was 40..." All I was thinking was GIRL, HOW OLD ARE YOU?! She looks so young and good.

She really is pretty

Бедная женщина 😢😢😢. ❤️

Dusty

I agree ❤

Sometimes things in life just happen to us, we can't control! 🙏🏾🙏🏼🙏🏻🙏🏻🙏🙏🏿🙏🏼🙏🏿

Modesty Sin and Gospel Cursing using Gods name in vain and trusting in God 1 Samuel 12:24 ESV Only fear the Lord and serve him faithfully with all your heart. For consider what great things he has done for you. 1 Corinthians 10:31 ESV So, whether you eat or drink, or whatever you do, do all to the glory of God Romans 5:8 ESV But God shows his love for us in that while we were still sinners, Christ died for us. Galatians 5:22-23 Open menu New International Version Open menu 22 But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law 1 Timothy 2:9-10 Likewise also that women should adorn themselves in respectable apparel, with modesty and self-control, not with braided hair and gold or pearls or costly attire, but with what is proper for women who profess godliness-with good works. All of 1 Timothy 2 is talking about spiritual service to God and conducting one's self in doing so. Verse 9 isn't saying that women should never dress nicely. It is saying that a woman should be seen for the works they are doing for God, not trying to draw attention by what they are wearing. Sin Galatians 5:19-21 ESV Now the works of the flesh are evident: sexual immorality, impurity, sensuality, idolatry, sorcery, enmity, strife, jealousy, fits of anger, rivalries, dissensions, divisions, envy, drunkenness, orgies, and things like these. I warn you, as I warned you before, that those who do such things will not inherit the kingdom of God. Mark 7:20-23 ESV And he said, “What comes out of a person is what defiles him. For from within, out of the heart of man, come evil thoughts, sexual immorality, theft, murder, adultery, coveting, wickedness, deceit, sensuality, envy, slander, pride, foolishness. All these evil things come from within, and they defile a person.” 1 Corinthians 6:9-10 ESV Or do you not know that the unrighteous will not inherit the kingdom of God? Do not be deceived: neither the sexually immoral, nor idolaters, nor adulterers, nor men who practice homosexuality, nor thieves, nor the greedy, nor drunkards, nor revilers, nor swindlers will inherit the kingdom of God. James 4:17 ESV So whoever knows the right thing to do and fails to do it, for him it is sin. Using Profanity Colossians 3:8 ESV / But now you must put them all away: anger, wrath, malice, slander, and obscene talk from your mouth. Ephesians 4:29 ESV Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear. Leviticus 19:12 ESV You shall not swear by my name falsely, and so profane the name of your God: I am the Lord. Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight. (Proverbs 3:5-6, New International Version)

❤❤❤❤❤ all mothers deserve this❤❤❤❤

Wow most cases that I’ve seen the surgery always did nothing or made it worse. Was it because you were so young when they operated, was it small, how was it the surgery worked out for you?

Interesting

😢oof

@@FernandoTorrera a big part of it was that my surgery was done early on. They were trying to stop the growth. they went in, cut and cauterized everything. They also developed a few devices to wear on my whole head to help healing and swelling afterward. The paperwork I have on it is pretty cool. My surgeon at UCLA conferred with doctors from all over the world to find the best course of action. Several of those doctors came from other countries to observe it. I'm just really thankful that my parents took it seriously and the doctors were so willing to learn. My Dad did have to quit his job so we could go on Medicaid so I could get the surgery done. Most insurances wouldn't cover it as they don't see it as a disability, they considered it cosmetic.

I’m so glad it worked. My husband and I are contemplating a divorce so we can get on medical for my daughter. She was born without eyes and our insurance keeps denying everything that he face required.

Good luck. Hoping for the best possible outcome 🙏🏾

Praying for you and your daughter.

Prayers for your family and your daughter to find relief from the pain

God bless you and your daughter ❤I pray she gets better in Jesus name

It's december now and I really hope she got better now!

That’s messed up that people bully people for birthmarks sooo stupid how people are .. I have a birthmark next to my breast I’ve always hated it till I became a women and men liked it I was like foreealz ??? Made me feel not so insecure anymore

I'm an older woman but qhen I was in high-school, one of my assistant teachers had a large port-win stain across one side of hos face.He was very smart and sharp witted person probably no more than 24 or 25 ..he was a white man..but very attractive nonetheless less and we became fast friends until school year is over.Also, he paid cash for his car.Boy was I impressed😅.Anyway, Beauty comes from inside.and as long as you remain sweet, caring, strong on loving yourself you will do fine.❤

​@@Jpcorza69I know exactly how brutally mean people especially kids can be to someone that doesn't look the same as they do. I have a heart shaped birthmark in the middle of my forehead and I absolutely hated it when I was a kid bc I got picked on a lot for it. I would do whatever I could to try and cover it whether by using my hair, I was in Jr high in the early 90s and that's when the big wave hairstyle that hung over half of your face was popular so I would cover it that way or try to with makeup but it would just lighten it and show through. I used to beg my parents to let me get it removed but looking back thankfully they didn't give in to that. I can't imagine myself without it now, I got older and started to see it made me different and it made me, me. However, even though I don't have to deal with kids being mean I do still occasionally come across some moronic adults that are just as insensitive and out right rude that will make really stupid comments, anything from tattooing your forehead is stupid, or didn't realize it was ash Wednesday when it's no where close to that. But for the most part now I get compliments on it and how unique it is to be heart shaped. I went to grade school with a boy that had the same birthmark you described in your teacher assistant and he was the only person in 1st-6th that didn't pick on me.

I can't believe something as simple as a fall could cause so much damage! Stay safe out there!!

Please be brave and flaunt the skin you are in. The more brave people there is, the less ignorance will exist. I know that it’s for me to ask and I certainly don’t mean to imply that you should do anything that you are not ready for.

😢😢😱🤦‍♀️

Wrong

Bless you for being a sweetheart

🧢

A female said this I guarantee it

@@Anonymous38572 lol incel alert 😈

​@@Anonymous38572a statistical male said this

Yea

Fr

I was so confused by your comment at first. I thought she said she was 40 and I was gonna say I'm 40 and I think she looks older than me. It replayed though while I was leaving this comment and I realized she said "when I was 40". No clue how old she actually is but she definitely looks youthful and beautiful to me. Doesn't matter how you look though, it's all about how you feel with age! I think it's incredible that she has the courage to speak out about her syndrome and is so open. It's sad that she lives in pain though.

No she doesnt don't lie like that but she does seem like a nice woman

Fr dude. I thought she was 40 rn

Thank you for the info.

Thank you. You read my mind.

You are the best for this comment

she said that already in this vid

@@sonishkasanthosh1953 I have never heard of this syndrome before and it was super helpful to have someone spell it out in the comments so I can go look it up. So.

tysm i couldnt find how to spell it

So cool

Yeah 😊

It's on my right side only specifically my arm

​@@noodleharman Same as me!

My daughter has it on her left leg, foot, hip & groin!!!

God bless you ❤

Just to say my friends have anger issues and that she fell on ice and her face and body went num so he would not bole you. ❤❤❤❤❤❤❤❤❤❤❤❤

Agent Orange is what killed my Gramps, gave him cancer. He was in Vietnam too. But by that time he'd already had all the kids he was going to have.

I know her makeup looks so good too! I really feel for her I wish she wasn't in pain. It's messed up because when you have a chronic condition like this that causes chronic pain it's hard to find a doctor who will treat you at all. Even if you have a very clear cause of the pain. They're just too afraid to prescribe painkillers now. The government has cracked down the wrong way. Now people who have severe pain are forced to live in severe pain because doctors won't give them pain medication anymore. It's messed up. It is better to accidentally give an addict their fix then to let someone in excruciating pain live in excruciating pain. It lowers their quality of life and it is a far worse ethical and moral crime to refuse to help them. Please the stigma around painkillers needs to be broken. I'm an in-home geriatric nurse and let me tell you right now doctors are even afraid to give painkillers to 80 year old patients now. It's a nightmare. And the pharmacists are honestly making it so much worse. Pharmacists are exactly like DMV workers and police officers. Most of them get the taste of the tiniest bit of power and it immediately goes to their heads and they start abusing it self-righteous while believing they are in the right for refusing to fill a cancer patient or a chronic sufferers medication and ignoring doctors orders. Pharmacists have too much power and we need to just adopt Mexico's system.

My daughter is the same!!! I believe they call it "Inverse KTW" when the affected limb is smaller/shorter!!!

Nope! Agreed!!! She's gorgeous!! I'm sorry the pain is constant... I hope they can find a treatment to help.

I think a whole lot of us think that 🙂☺️🥰

It really doesn't

Stop it you no dam well that is a lie.