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  • Hello, everyone.

  • My name's Barbara Webber and I am a almost nine years survivor of narrow sarcoidosis in sarcoidosis, and I wear purple for sarcoidosis awareness.

  • I was a hairdresser for 24 years, and I ended up having lesions in my brain, spying in Long's, which I never knew I had.

  • And it started out with just the eyes going bad with UV itis and I write this and excuse me, it attacks your whole entire immune system.

  • And I get I V i g infusions every other week, which is blood platelets from donors.

  • And as you can see, here is my I V pole every other week that comes out for five hours each day, three days in a row.

  • That is what's keeping me alive right now in moving, because without it, the neuropathy is so bad, I can't even move my big toe.

  • So, um, on top of that, I've been getting Remicade for almost nine years as well.

  • I started out at the Cleveland Clinic.

  • Um, I'm not sure we convention doctor's names, but they saved my life because without Remicade, that is not FDA approved.

  • Here in New York State, I ended up having to have a 40 page letter sent to York insurance so it could be approved so I could basically function.

  • This disease is not easy, nor is any disease.

  • You lose friends, you gain friends, you gain a community of support group, and we really need awareness out there.

  • And they're so many people, so many doctors that are uneducated of what they need to do, what works, what doesn't work.

  • And everybody's different.

  • Every single case of Sir Keratosis is different, and that's why some of us call each other snowflakes because we're all different.

  • Me personally.

  • It affects my eyes, my lungs, my liver, my bladder, my spine.

  • Pretty much everything I was in wheelchair because of the neuropathy was so bad that I had a skin punch biopsy done a Cleveland clinic to prove that I had a small favor neuropathy caused by the circle doses.

  • And it's also affecting my autonomic system, which means anything that's involuntary.

  • And I'm sorry I have to get a little graphic, but anything with bow bladder, your heartbeat regularly in your heartbeat, your heat.

  • You know your temperature that all goes haywire.

  • One years sarcoidosis information is very high um, the doctor's appointments are crazy out of this world.

  • You're constantly running because it's such a multifunctional disease.

  • You have to go to a cardiologist.

  • Palm monologist, rheumatologists, neurologists, urologist pretty much anything that ends with just you have to see.

  • And because of this disease could be so crippling.

  • I could no longer drive because it causes the seizure activity.

  • Um, so therefore, I can't trust my own body to drive anymore.

  • You gotta depend on drivers and it's very, very humbling, very difficult.

  • But I will tell you I have a very positive attitude because I know that I'm going to be okay and I won't let this get me.

  • I will not let it beat me.

  • I am very upbeat.

  • If anybody follows me on Facebook, they know that I joke.

  • I make fun of, um, it's very serious, but I poke fun to try and make people laugh.

  • I feel better, but there's days that it's very hard.

  • There's some days you can't get out of bed there.

  • Some days that you don't want to get that in.

  • That support group helps.

  • We need thio.

  • You probably hear my oxygen in the background.

  • I'm on three years of oxygen because it affects the lungs.

  • And, um, I'm 47 years old.

  • My quality of life has gone downhill.

  • I still do things that I normally did, but with a lot more difficulty.

  • And if I can help anybody, um, I would say it's stay positive is best.

  • You can talk to people.

  • Don't let fear get you.

  • There's Google good and there's Google bad, so if you're going to research like we all d'oh, you look for Mayo Clinic, Cleveland Clinic.

  • Um, any type of hospital strong memorial Don't go to forms because people will give you advice.

  • It's not always good.

  • There are people that you don't know what they're doing that obviously, we can't give you medical advice.

  • But I like to give people uplifting advice.

  • And excuse me.

  • My mouth is dry because of the sarcoidosis.

  • You also have a snowball effect of other autoimmune diseases.

  • Show grins usually comes with it, and I have Hashimoto thyroid because the immune system is just working crazy over time, and, um, okay, it's It's not easy, but having a good support system and your family, a lot of people walk out on their spouses It's very hard.

  • Communication is key.

  • You have to let people know how you're feeling because we don't know We're not mind readers.

  • They don't know they're not mind readers.

  • And, um, I'm I've been told pretty much I'm gonna live with us the rest of my life.

  • They can tell me all they want to tell me, but in my heart and my faith, I know I'm going to beat this.

  • Whether it's here or in heaven, I'm gonna beat it.

  • I Either way, I win.

  • So my faith definitely gets me through every single day.

  • My motto is If I wake up on the right side of the grass, it's of the day.

  • I hope I can empower someone with with faith with hope.

  • Um, any anything that brings inspiration.

  • I'm here for you.

  • You can look me up on Facebook.

  • Barbara Webber Barbara Mardiana Lever.

  • Excuse me, and I'm glad they talked to you.

  • You can message me, but we need to get the word out.

  • The word sir, keratosis is becoming more and more popular even though it's rare.

  • They say it's mainly in the African American descent, But I'm clearly not African American.

  • I'm Scandinavian and it's showing up more and more.

  • We're finding more genetic ties with it.

  • And, uh, I would love two.

  • Talk to anybody they want.

  • Talk to me and I hope this helps you.

  • We need awareness.

  • Spread it spread.

  • Spread it all over the place because there's there's not enough doctors, some doctors.

  • I hate to say it.

  • We know more than they dio and be your own advocate because I was told I would never walk again.

  • I was in a wheelchair and I was told I didn't have a typical walk like an M s patient.

  • And I'm sorry there's more diseases out there than cancer and a mess.

  • And I don't mean to downplay anybody, but I was told I would never walk again because I didn't have that typical walk.

  • Well, excuse me, What's a typical work?

  • I had a vision.

  • I was gonna walk again and I asked them to try intra fecal back life in pump because I had severe spasticity.

  • I would hold a coffee cup and get stuck to it, and my hand would burn because of the neuropathy caused by the sarcoidosis.

  • So I asked them to do a trial and within 10 minutes they couldn't produce a trial.

  • Excuse me?

  • A spasm.

  • And they're like, Wow, you're amazing candidate.

  • And I said, I know I told you I had a vision and I'm going to do this and I'm walking again.

  • I'm walking, talking and doing what I have to just with more difficulty.

  • Sarcoidosis is very, very involved, and it takes a lot of your time a lot.

  • We will spread hope.

  • We will spread information as much as we can and stay positive.

  • Don't let this beat you because then the disease winds and we don't want that you fight with all your might.

  • Don't ever give up.

  • And I have a saying if anything comes into my head negative, I will tell myself, Stop that stinking thinking because it's it's not good, because that will give you thoughts that you don't want and you'll end up with depression.

  • And I'm gonna let you in on a little secret because of sarcoidosis I have to take.

  • I'll give you a peek.

  • I have to take heart pills, water pills, thyroid pills, potassium, Valium, um, prednisone.

  • That's a bird alarm Cardizem for the heart because it affects the heart I take l fuses in because you can't go to the bathroom.

  • You can't urinate properly.

  • Stool softeners.

  • Mira, relax.

  • You can't.

  • You can't go to the bathroom pain pills.

  • I'm probably on at least 20 pills.

  • I'm on two inhalers.

  • Nebulizer.

  • Here's my nebulizer.

  • Show you.

  • I'll bring it to you.

  • There's a nebulizer.

  • There's so much involved with sarcoidosis.

  • Stay positive.

  • You will get through this.

  • It's a very, very difficult.

  • But if you have the willpower you can beat this faith is to me is forward action in the heart.

  • And I stand firm on that.

  • Whether you believe in God.

  • Jesus, Olive, Whatever.

  • Buddha just have faith because that's important to get through this without it.

  • I don't know if I could be a strong, but I know in my heart Then I'm gonna be okay.

  • And there's days that I can't get out of bed.

  • There's days that I can't even get myself my own food.

  • Um, perfect example of the other night I had a bronchial spasm and I couldn't breathe.

  • And countless trips on my goodness.

  • Countless trips to the hospital.

  • Since January alone, I've had 10 10 or more hospital visits the doctors look at you go and still tell me I'm too difficult and we don't know what to do with you.

  • Well, that's wonderful.

  • That's why these doctors need to be educated.

  • That's why these doctors need to be, um, informed of what these diseases are.

  • Home nurses need to be aware of symptoms that can happen because I don't drive like I told you, I get this every other week at home, and then once a month, I get Remicade in an infusion center, and having people drive me to places is it's humbling and it's hard.

  • And right now I'm I'm in a situation where I don't have a driver because my mother, she broke one leg and tore cartilage in the other knee.

  • So she literally doesn't have a leg to stand on right now.

  • And you really, truly find out who your friends are when this happens.

  • If you are ever, ever, ever thinking of suicide, don't reach out to these support groups.

  • That's what we're here for.

  • We want to help you.

  • We want to lift you up.

  • There are too many people that give in to this disease and unfortunately commit suicide and It's very, very easy to slip into that depression.

  • But we're here.

  • All of us snowflakes, if you will, um, or Sarkies or whatever you wanna call us where there's hundreds and hundreds of them all over the Internet.

  • Facebook, social.

  • Me, uh, anybody that is going through this knows what we're talking about.

  • Co pays astronomical.

  • The the meds alone.

  • They're very, very expensive.

  • Um, I in 2005.

  • No, I'm sorry.

  • Excuse me.

  • 2015.

  • My husband's insurance switched, and we were told that it was too experimental what I was on since 2008 and they took everything away from me.

  • And because of that, I Now where?

  • Try Fogel's At 46 years old.

  • They almost made me go blind and they almost killed me.

  • And I ended up in the hospital three times and back to what I was saying before about the hospital.

  • I also had 33 ambulance rides.

  • Um, I was told I was gonna have a long transplant and scared my whole entire family.

  • And that's where the education comes in.

  • Because thes doctors don't know what's going on.

  • They need to be educated.

  • I cannot stress that enough.

  • We as patients.

  • We know more than the doctors do, and I am not kidding.

  • You can ask anyone.

  • That's a a veteran, if you will, because I know.

  • And I told my pulmonary doctor yesterday.

  • I said, I know my my autonomic system is not working correctly.

  • My, I have Ah, great.

  • Here.

  • Come on, heart monitor on right now because I'm going Take a Kartik and Brady, which means that my heart could stop at any moment.

  • My vocal cords, they snap shut.

  • Well, guess what?

  • Your vocal cords don't work that blacks your airway.

  • It's just like choking.

  • And you it blocks your lungs, you can't breathe.

  • So I was fighting for breath, and many of these meds have side effects and the doctors keep throwing meds at you and you have the right to say no.

  • You do your research on the meds and the side effects because once you have so many meds, you don't know what's causing what anymore.

  • And I found out yesterday that I've been on Remicade since 2008.

  • Like I said, my eye did not build up antibodies.

  • I did not have an allergic reaction, but I am over Lee Toxic right now of the Remicade, which means they're giving me too much too soon.

  • So unfortunately, I have to go back to steroids.

  • And if anybody knows steroids, they're not fun.

  • You get, it's you get roid rage really bad.

  • I'm one of the worst ones.

  • You get this nice little round face here.

  • This is beautiful.

  • I used to be £126 before all this happened, and they blew me right up with steroids.

  • And it's very hard on a person body image wise.

  • But remember, our body is just a shell.

  • It's your spirit that counts.

  • Your spirit speaks miles, and if you're positive around people, they'll be positive.

  • And if you smile, that smiles contagious.

  • Don't let this beat you.

  • My name's Barbara Webber and I'm a circle A toast to Survivor and I will continue to survive.

  • I love you all and I wish you the best.

Hello, everyone.

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バーバラ・ウェーバー インタビュー from Surviving Sarcoidosis (ノーカット) (Barbara Weber Interview from Surviving Sarcoidosis (uncut))

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    林宜悉 に公開 2021 年 01 月 14 日
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