Name: 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))
Uploaded: 2021-01-14T09:40:58.000Z
Duration: 20 min 29 s
Description: VoiceTubeの動画で発音を聞きながら英語表現を覚えよう！学べる英語：

程度の副詞

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.

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.

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

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.

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.

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.

You probably hear my oxygen in the background.

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

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

字幕リスト動画再生

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))

immune

depression

positive

disease

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))

immune

depression

positive

disease

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))