Welcome to Taking Healthcare by Storm, Industry Insights, the podcast that delves into the captivating intersection of innovation, science, compassion, and care.
In each episode, Quality Insights Medical Director, Dr.
Jean Storm, will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys.
Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania, and the nation.
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Hello, everyone, and welcome to Taking Healthcare by Storm.
My name is Dr.
Jean Storm.
I am the Medical Director at Quality Insights, and I am very excited today to be speaking with an individual that I feel like I've had the pleasure of meeting through some of my colleagues here at Quality Insights.
And just in our short conversation we've had, I really feel inspired in what she is doing and in her journey, and I think that you will too.
Welcome, Tonya Barnett.
Hi, Tonya, how are you?
Hi, I'm good.
Thank you.
So tell us, have you always lived in West Virginia?
It was on and off most of my early adult life, and in 2005, it's been here ever since because I wanted to stay close to my family.
So I decided that I wasn't moving out of West Virginia anymore.
So I know you work in health care, so tell us about your background working in health care.
I have worked in health care in the past.
I did in-home health care, also worked as a nurse's assistant and also as a safety attendant for the hospitals.
Oh, very nice.
And so you've always worked in health care in West Virginia?
Yes, on and off.
It hasn't been my only job, but yes, I have been in several positions in the health care field.
Gotcha.
So tell us about the West Virginia Statewide Independent Living Council.
So the West Virginia Statewide Independent Living Council was established under the 1992 amendment of the Rehabilitation Act of 1973, which has since been amended by the Workforce and Opportunity Act in 2014.
Council members are appointed by the governor and includes representation from the West Virginia Independent Network, which is the WIN, the West Virginia Division of Rehabilitation Services, which is West Virginia DRS, and other states that provide services to individuals with disability.
Okay, so you do a lot of advocacy in working with individuals with disabilities.
So big part of the West Virginia, Stilka is short for the West Virginia Independent Living Council.
We kind of do a lot of monitoring of where the money is going and making sure it's spent right between the WIN partners and DRS.
But we do a lot of things by like making sure that the schools are bringing in disability history in the schools because there is a law for that.
So we have an essay contest.
We try to help making sure there's money raised for, we're getting ready to put on a car show to raise money for accessible modification for vehicles because we lack funding for that.
So it's a multitude of things we do, but our main thing is to make sure money are spent right.
Now, what about West Virginia 211?
So what is that service?
211 is a resource that's off the United States that people can call to get resources.
Now, 211 is still building up their resources.
They do have a lot, but actually people can call from here and get resources in another state, another state person from another state can call for resources here.
Let's say it could be about suicide.
It could be about maybe your grandmother named Fu, and she's just not able to make that call or get that resources.
But it's not just locally.
You can find help for other individuals throughout another state.
So it's all about resources and trying to find the assistance that you need.
They're really getting, yeah, getting individuals who need help, the help that they need.
That's wonderful.
So I wanted to shift gears a little bit because I know that you and I talked about your own challenges with disability and you're doing this important work in helping individuals who have disabilities.
So tell me what a typical day for you looks like.
A typical day, I get up at 7.
My first thing is to shower, get dressed.
I have a dog and cat, so dog gets out, bring her back in, feed in water, make up, hair, brush out the door, get to work by 8.30.
You know, usually it depends who gets it first.
Sometimes it's me, I'm opening up the doors, getting the place open, making sure emails are answered first thing.
And then my days are not the same.
So is there a meeting, a board meeting?
Do I have to prepare for a meeting material-wise?
So it's a lot to do with getting things prepped, meetings.
It varies, but then if you put in trying to mix in appointments, it throws everything off.
But it's a lot of variables in my day.
I work with a lot of different things at once.
It's a juggling act a lot of times.
Yeah, that's what I was going to ask.
Do you think what are some of the challenges you experience due to your disability in working?
Some of the challenges is because I have multiple disabilities.
One of them is multiple sclerosis.
It's halfway through the day dealing with the fatigue.
And then some days my brain is working.
Some days it's not because cognitive will hit.
It's just like my brain wants to shut down.
So I have a lot of what I call cheat sheets.
I have things to keep me in line with what has to be done.
Sometimes switching tasks, I forget what I need to go back to.
So I really have to work hard to keep myself in line.
What I have to jump from and jump to.
That's wonderful.
But you have your tactics in order to kind of help you function.
It's interesting because it's like you have to do more than the regular person who doesn't have a disability because you have to kind of keep yourself on task.
You really have to be determined and you have to discipline yourself.
Yeah, it sounds that way.
Now, I know we talked a little bit about your experience in being in the hospital.
Can you just tell us a little bit about that?
Because I know you were in the hospital recently.
So my experience in the hospital was unfortunately, well, when I went in, what happened is I was having severe migraines.
And if anybody knows anything about migraines, they can get really bad.
And mine is due for my MS.
And it got to the point I was having blurred vision and I couldn't handle no light.
And I thought I was grabbing ibuprofen for these headaches every four hours.
And unfortunately, I was grabbing the wrong medication.
I was at every four hours, I was grabbing a prescription medicine thinking I was taking ibuprofen.
I accidentally overdosed.
And so I ended up in the hospital for accidental overdose.
Found out my liver enzymes were very high.
So that was one concern.
Then I was asking about my liver enzymes and they were like, oh, we don't know, we're concerned about the MS attack, which that was causing the migraines.
So it was a very confusing time because at that time with the headache and MS, I wasn't able to keep things straight and they had me all confused.
I had different neurologists coming in, tell me different things.
I had gastroenterologists coming in.
I had physical therapy coming in.
And I really got confused because there was just so much going on and I wouldn't get answers.
And I don't even know if I was even asking the right question because my daughter said I was slurring words.
And I have in the past would think I'm saying one thing and actually be saying something else when I was under attack, an MS attack.
So it gets very confusing.
Then, like, was I even understanding me?
So you did you feel like at your discharge?
Did you feel like you got clear communication from the hospitals and from the doctors?
No, there wasn't.
I even I went to my doctor appointment afterwards and even then the communication still wasn't clear.
I was told a diagnosis of smoldering and mess, which I never heard of.
And it seems like no one really has an idea of what that means.
Yeah.
So there's a difficulty in getting a clear definition of what is going on with your health.
Yeah.
Well, even with I two weeks later, I got a call because I was told that one of the CTs were clear.
Not to worry about.
Then I got a call that it's not clear.
And they made it sound urgent, but yet there has been no more testing since then.
So I'm in.
Yeah, sounds that way.
Do you feel like you ever do you feel like I know you say it's kind of feels like it's in limbo now, but did you feel like you ever understood how to manage your chronic diseases yourself?
Well, I think the problem with me is that I have so many.
And this is one thing I've actually was making notes about is that one is a liver, one is a kidney, one's the MS, and one has to do with my bowels.
And I keep getting told not to eat this because of my MS.
Do not eat this because of my kidney.
Do not eat this because of my liver.
Do not eat this because of my bowels.
And by the time I'm done, I'm like, what do I eat?
Yeah.
You know?
And so here I am.
I'm like, nobody can tell me what I can eat.
They're all telling me what I can eat.
And I'm to the point where I just I don't go on any diet because I'm not sure.
Because I mean, it's really confusing because I mean, it's not just like everything's well.
It's just probably just beef and stuff.
No, I've been told certain foods I shouldn't eat because of, you know, I shouldn't eat nuts.
I shouldn't eat chicken for what I want.
I shouldn't eat wheat because of I believe it's the kidney or the liver.
But if you start reading up for each one that you're not supposed to eat certain things for, I'm like, OK, I'm just going to starve.
Yeah, I can understand you get a lot of conflicting information.
And that's where the frustration comes in.
Sure.
What about during the pandemic?
Was it difficult for you to access health care for all your chronic medical conditions during the pandemic?
Well, during the pandemic, I had a kidney stone.
And at first, it didn't seem difficult until they couldn't find a kidney stone.
And they couldn't figure out what was going on.
And I did end up, I kept getting, they kept putting me off.
They kept putting me off.
And I understand that, you know, there was a lot going on.
But with the severe pain and I was having severe issues, I actually ended up at Cleveland Clinic, which there was damage been done to my kidney by this kidney stone.
But it was an odd situation.
The kidney stone was actually inside of a cyst inside of my kidney.
That's why they couldn't find it.
And they, after Cleveland Clinic, it was so bad.
They had me in the hospital three weeks in a surgery and everything else.
I'm so sorry that happened to you.
Do you feel that it's difficult?
You know, I know you, you know, I talked and you said you do have insurance.
Do you feel that it's even difficult to pay for your health care needs even with your insurance?
Well, you know, I don't even know.
I'm grateful to have insurance.
But with having so many medical problems, chronic illnesses, I have eight medications I got to take monthly.
And you figure that at $10 a copay, that's $80 a month.
I see anywhere from four to five doctors a month.
I pay almost $200 a month just in my co-fees.
And you got to remember, every time I go to a doctor visit, I'm losing out that amount of pay a day.
So it's not just paying, having to pay a large copay.
It's also having to lose that amount of pay for that day of work.
It can be a struggle.
Yeah, you have to kind of think about putting your health or your work first.
That's very, it's a very difficult decision.
No one should have to make.
How about getting to your doctor's appointments with your, with working?
Is that challenging?
Well, the problem is because there are certain meetings that I have to be at.
Our silk board meeting, I have to attend.
So, I can't make, I have to make sure there's no appointments on that day.
The RIPE House, I have to make sure no appointments are on that day.
So, it does get difficult trying to arrange appointments around my meetings and everything else.
So, it can get difficult because you're trying, and you're trying to explain this to the doctors and they're looking at you like, hey, we have no other time, and like, well, then, wait, I have done it.
I say, well, we'll have to go to the next month.
I have no choice.
Have you been able to take advantage of seeing any physicians over telemedicine?
I have, but the complications with some of my appointments I cannot do because they have to check my balance, they have to check my eyes, my coordination, you know, stuff like that.
So that's something you cannot do, you know, over a Zoom or, you know, them to see, they have to physically see me.
That makes sense.
That really makes sense.
Do you feel like your health care issues have impacted your ability to enjoy your life?
Yes, because I have to make a choice, either put my energy towards working or to do other activities.
And in order to survive, I have to work.
Yeah, that's unfortunate when you have just so much energy due to your disability or chronic disease, and you have to decide whether, you know, you put all that energy to work or put all that energy into other things.
And there's a really good thing out here, it's called the spoon therapy.
And if you read about it, it talks about we only have so many spoons a day.
And if we run out of them spoons, we're done.
You know, we use a spoon to take a shower.
We use a spoon to go to the store.
We use a spoon.
And once you're done, you know, and you try to save a couple spoons if you want to do something extra the next day.
You know, and I can relate to that because you're like, OK, I'm not going to do extra house cleaning day because I want to do this tomorrow.
You know, so you do try to reserve your energies.
If you like, I have a granddaughter.
If I want to spend time with her, it's like, OK, this can wait.
Yeah.
You have to conserve, save up.
So if you were in charge of health care in the United States, what would you do to fix the system?
One, I think there should be a clinic for people with multiple chronic illnesses where, you know, doctors need to be able to get together and have a conversation about patients who have multiple chronic illnesses, because I think sometimes they are misdiagnosed because they have so many that they might mistaken it for something, because I'm actually having a conversation with a doctor about this now.
I'm getting shoved around about the numbness in the very bottom of my feet.
Nobody wants to claim it has to do with any of my illnesses.
And I'm like, okay, I'm the one dealing with this, and nobody wants to say, hey, it could be this good.
Well, we know it's one of them, but nobody's saying it's any of them.
So I think it's very important either that or these doctors be able to get in a Zoom meeting and discuss a patient.
Some sort.
I mean, the patient has to come in somewhere.
I mean, even have the patient in on this meeting.
I think they have a right to have a conversation about this.
And I think, to me, I feel like sometimes I get punished for having these illnesses, and I'm like, I don't do drugs, I don't drink, I don't smoke, and I've just been dealt a bad hand.
And I'm trying to work.
You know, I could easily get disability.
I've been told that many a times, but I don't want to be on disability.
I went to college.
I want to use my knowledge in helping other people.
But it feels like I get punished for that.
And I think, really, if disability will say, hey, you know what, we got these people working with a disability, let's see how we can help them instead of having them be put on disability.
How can we support them, help maybe, like, okay, so can we give them two weeks of paid sick days on top of their work time?
Okay, so that way, they're not losing their vacation day.
They may actually be able to have some vacation time.
Or maybe they won't lose out of pay and be able to pay their bills instead of having somebody on disability for a month.
That makes complete sense.
They complain about so many people being on disability, but if really you could take so many people off if there would just be some assistance.
Sure, I agree.
Is there anything else that you would like to say to give individuals with disabilities a voice?
Don't give up.
You know, because the thing of it is work gives you purpose.
It really does.
And I really believe that people who have disabilities, they stay home.
You get depressed.
You don't feel like you have worth where work does give you.
We have barriers and we just need people to help us get them barriers out of their way.
We're not helpless, but do we need help?
Yes.
Wonderful advice.
So the last thing I would love for you to tell us about your appearance on national TV.
So my son was getting bullied.
And yes, I do like to speak out about things I feel is wrong.
And so I was fighting the school trying to get the bullying to stop.
And unfortunately, some people in the higher position was not listening.
But I did have a counselor and a teacher backing me 100 percent.
And I kept going up the ladder.
And I did end up with an apology letter after two years after having the school investigated and got invited to be on national TV to speak about it.
And so I did go out to New York City with my son.
And we spoke out about the bullying that went on with him.
And after that, I was invited to meet a couple people.
And after that, I actually ended up working on the bullying issue for seven years.
I actually was with Governor Manchin, which is Senator Manchin now, Tomlin.
And we did presentations, all kinds of stuff, crafts.
We spoke with Natalie Tennant.
We had a proclamation.
We really did work hard.
Unfortunately, we lost the funding.
But I still have people reach out to me, and I still have everything.
And now I'm still able to help people, which is, you know, that's what made it worth it.
Absolutely.
You helped a lot of people.
And you're helping people now.
So I just want to thank you so much for joining us.
You've been an inspiration to me, and I'm sure you're inspiring everyone who's listening.
So thank you so much, Tonya, for joining us.
Thank you for having me.
Thank you for tuning in to Taking Healthcare by Storm, Industry Insights, with Quality Insights Medical Director Dr.
Jean Storm.
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