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Finding life after loss, Two Dancing Widows dives into the stories of resilience, hope, and transformation. Hosts Toni and Hettie welcome new guests each week, from widowers and life coaches to those battling severe illness, who share their journeys through struggle and their paths back to joy. This podcast is for anyone navigating grief or simply looking for inspiration to live and love deeply again. Tune in for heartfelt conversations that remind us all that healing, while challenging, is a dance worth stepping into.
Coming up on this episode of Two Dancing Widows.
I've always kept going.
You know, I think the hardest time for me was when I started having panic attacks and
the last relapse I had when I lost my eyesight and I really became dependent.
They're very dependent. Almost really couldn't numbers work.
And that was very hard for me. Couldn't drive, couldn't see the screen.
And then when I lost all my hair, all of that in the same period, that was very, very difficult for me.
Welcome to Two Dancing Widows.
We're hosts Tony and Heady explore life after loss and the strength we find in each other's stories.
In this episode, they sit down with Dr. Erica Collins, who shares her incredible journey through a life-altering illness.
Her story is one of courage, resilience, and hope.
You won't want to miss it.
Now let's join Tony and Heady as they dive into this powerful conversation.
Our guest today is Dr. Erica Collins.
Thank you.
And we welcome you here. And Erica, can you just share your illness journey from the time you became ill,
through to your diagnosis? Just tell us a little bit about that.
Tell you a little bit about that. How are you all?
We're doing great.
Well, the journey started from tingling in my fingers to numbness.
And it's actually a funny story. I'll tell you this at the very beginning.
I took the sentence to Google to see what my sentence meant.
And according to Google, I had MS.
And so I ran to the store with my mother.
We would sit and buy them a store.
We bought all these $100 worth of vitamins.
Okay.
I wonder if we're running to the store to buy $100 worth of vitamins.
And I started taking these vitamins, but of course, it did not help.
Is that what they said of Google to do?
And talk about the vitamins that you could take for these symptoms that you have.
And so we went, we bought the vitamins and started taking them.
Kneesless to say it didn't work.
I eventually lost control of my bladder.
And it happened to actually be out of town with my mentor.
We were in champagne.
And I went into staking shake.
And I looked down and I had used a bathroom.
And I didn't know it.
So we got back to Chicago.
I went to the emergency room.
From there, it's been a journey.
A long journey.
And from there, it was Miss diagnosis.
I was diagnosed with MS by the University of Chicago, treated for MS over a year.
I was told a muscle control was wheelchair bound.
And then told one day I was in the hospital.
I've been in there for almost 10 days and was told, oh, you don't have a mess.
We don't know what you have.
But we're releasing you.
Have they put you in that steroid treatment?
Oh, yeah.
I was in steroids.
And I was constantly having to take MRIs.
Yes.
And so what they, they truly, the diagnosis.
I was told that I was in a state of emergency room.
Or the missed diagnosis was probably what I would say warranted.
Because I had lesions on the brain.
Which are consistent with MS.
And not necessarily consistent with lupus.
But I didn't have the other symptoms that go along with having MS.
So my muscles weren't impacted.
Like they are with patients that are diagnosed with MS.
So they sent me along the way.
And I went over to Northwestern.
And I met a doctor who was asking in her residency.
And I don't love what they're.
And she said, you know what?
You have not hit all the markers for lupus.
But your symptoms look like lupus.
So we're going to start treating you as if you have lupus.
And that began my journey.
I had a 26 year journey with MS.
My husband had MS.
He was diagnosed.
He was falling down, playing basketball, you know, that kind of.
He went through years of different doctors and different diagnosis and chiropractors and exercising.
And just all kinds of things.
Until finally, he was diagnosed by a neurologist in Oprah.
And then said to the University of Chicago.
Well, the interesting thing about it is so funny.
I guess when you think about it because Erica was doing something about it too.
In fact, it was so crazy that she would walk up the steps and fall down.
That we were building a house that we considered making the trips larger.
Because, you know, she's a tall girl.
And she wears a size 11 shoe.
And actually when steps were originally designed, they would design for a size 7 and a half shoe.
And that was a man.
And really, steps have not gotten any bigger since then.
So we deliberately were going to put in, you know, wider trends.
And we did for her benefit because nobody knew that she had lupus.
But Erica, did your journey actually begin at that point?
Because I always thought it started a little bit earlier while you were in college with pimpagus.
The earliest diagnosis because since that time we've learned that you have multiple immune disorders.
And you do have a little bit of multiple cirrhosis too.
No, not many.
No multiple cirrhosis.
No multiple cirrhosis.
The lesions on the brain were a multiple cirrhosis, but now the severe type is mostly.
What was it?
Norma, the lytocylomyelitis optica and devitse, right, which is a combination of disorders.
Yes, people remember how they have dysorias.
Yes, so when I was in college, I was at my first year at Dillard.
I think my first time I was at Dillard.
I just broke out in these blisters.
I was told I had chicken pox.
I was having allergic reaction to the chicken pox.
They tested me for age.
They tested me for age.
I was talking about maybe the heat down there, initially.
But we were actually living in champagne at the time.
I was going to call Carl.
I think I went to Christi's clinic.
And they just diagnosed me and misdiagnosed me.
I came to Chicago and my plan, Joanne, she worked at the University of Chicago.
She said, no, we're taking to the University of Chicago.
And they took me to the University of Chicago and they refused to give me.
This is when I first started really getting interested in medicine.
When I was being misdiagnosed in champagne, they were constantly treating me with different medicines.
Yes.
And when I went to the University of Chicago, they refused to give me anything.
I asked for it.
I reprofe nothing.
They said until we know what you have, we're not giving you anything.
And so it took a long time before they were able to diagnose me.
And I was back and forth to the doctor.
I was actually saying a dermatologist.
Yes.
And he diagnosed me with pethicus.
And that's actually a very rare disease that a lot of people get who are European.
And they're just European Jewish people.
Yep.
Yep.
And so yeah, I got diagnosed with that.
And the only treatment, because there's no treatment for it, was steroids.
And so they gave me very, very high doses of steroids.
And I lived off the steroids for about three years or so.
And then he said it.
He said it went into remission.
And he said, you know, you have autoimmune disease.
It's going to come back as something else.
He said, it is definitely going to come back.
But I went almost 14 years before I came back.
Do you think that people with autoimmune diseases often go through that saying,
because the more I talk to people, they've been to doctor after doctor,
misdiagnosed oftentimes.
We had a kindergarten teacher I worked with for three years.
And for 20 some years, she was misdiagnosed.
Yes.
And so I wonder if that's the journey.
Yes.
I do think it's the journey because I think that without autoimmune disease,
it's this heart of diagnosed them because they have so many different symptoms.
And there's nothing to light, which is why they have all,
they have these things that they call markers.
And so if you get more of a marker, then they'll start to treat it just based off of that.
But the likelihood of you having all the markers early on in the stages of society,
I'm likely, which is why I don't think I ever got all of the markers for lupus.
And I really, to be honest with you,
you never had a definitive diagnosis of lupus until I got ready to have a stumps out transplant.
Okay.
And then I actually had a definitive diagnosis of lupus.
Well, that's interesting too, because with the doctor saying that he knew that this was going to turn into something else,
it was almost like in some ways they were trying to do well.
I mean, I don't think intentionally because the he was a really great doctor.
Yeah, and you know, he worked really hard and anything new that developed in the area.
You know, he was university did to research, they held two research conferences on me.
And I got a lot of my health care for free from university Chicago,
because not a lot of people have it or had it.
But they wanted her, she was college student and he wanted her to stop school.
And because of intensity of her disorder and I was saying, and do what?
So the son was causing her some discomfort because of the blisters and all.
And I'm like, well, this was a white shirt, as long as we,
and by the way, here's your train ticket back to school.
Yeah, I was like, I was taking a plane.
Yes, yeah, it's like a plane.
Yes.
And if I had neglect to say it, I'm gonna say, this is my daughter.
Yeah.
I was speaking to today, my oldest daughter, one of my children.
So one of the things we'd like to ask you was, what are some of the emotions that you experienced
throughout that journey, really of diagnosis, misdiagnosis, medicine on off, you know,
big filling in remission for 14 years and all of a sudden,
something happens in your back to square one and even worse, right?
Yeah.
Yeah.
I, I will say probably, when I got better with pimpfigus, I was young and really just,
it was always in the back of my mind that I kind of something else.
And I would have, you know, throughout the years, I had symptoms of something,
but I never really knew what it was.
But I used to, I always feel like it was water running through my legs at different times, you know.
I forget what they call it.
But I think it's almost like signs of neuropathy, almost.
Yes.
I would have periods of those, I would have periods of where I would, you know,
loose touch and my fingers stuff, but never long enough for it to, for me to be troubled by it.
And then when I got, when I got sick, I remember just wanting to know,
I just wanted a diagnosis.
When I was going back up to University of Chicago and they were treating me for M.S.
and I wasn't getting better, I just, I felt, I just kept thinking I just want a diagnosis.
Because every time I would go, they would say, well, you know, it looks like a mask,
but then I don't know if it's a mask, because your body's not responding.
And it was just this constant.
I think I was hospitalized like six times a month, and I was, I was walking out of there,
probably more confused, I mystified than when I went in.
You were on the interferon.
I was on the interferon.
Yes.
Yes.
Yep.
Yep.
I had to get myself in a chair.
Yeah, I had to come and give that to you.
You did.
You did.
For a long time, I was walking through with myself.
How did you keep your spirits up?
Oh, that's a good question.
And I maintained a job going into time.
I've got a new job too.
Yeah, that was so, that was hilarious.
She checked out in the hospital.
I'll tell you something.
I did.
I had got a job at Cook County, and you had to take a physical exam.
And with this is when I was actually, I guess I wasn't diagnosed with the MSDM because
you were, I wasn't working then.
You were with Dr. Hitler.
But I was with Dr. Gelsen rehab at this point, and they, I think it was my first, yes, my
first time I've been placed in rehab, and it was like a 30 or 42 day stay or something.
Like that.
At the time when I was rehab, I got a call from the county that said I had to come in for
a physical and I had a job.
So I asked Dr., and I was Dr. Gelsen, she was head over rehabilitation institute as well.
I figured what they call it now.
It's not called the rehabilitation institute, but she was over the rehab facility as well.
And she said, well, okay, we'll give you a pass to go.
And, but I had this, I could not really walk.
I had a cast on my leg.
And, and she was like, I don't know what I was going to tell them happened to my leg, but
we didn't have the cast.
You needed a brace.
I needed, I had it right.
I had to go.
Okay.
Right.
Right.
That's right.
And then they asked me what happened to my leg.
And I said, I, I, uh, sprained my, I said, sprained something running.
He said, bad fall.
You must be a runner.
Right.
And I said, yeah, I was running on the leg front.
But I passed a physical exam.
And so, yeah, then I got out of rehab.
I went straight to work it.
Yeah.
So working helped keep you uplifted.
Yep.
That kept me uplifted.
My parents kept me unlifted.
Um, brothers and sisters kept me up lifted.
Um, friends, I had friends, my, my friends had a friend fly in from California.
Yeah.
Everybody was coming through and kind of looking out for me.
And so, um, I never really, um, I mean, there were moments of where I felt sorry for myself.
But, you know, not really.
Because people were always keeping me dizzy, always doing something.
And even when, even in my darkest moments, like not knowing, um,
if I was going to ever walk again and be in a wheelchair and those things, I, um,
I would feel sorry for myself.
I almost got kicked out of rehab because I was in rehab and I was refusing to go downstairs and do rehab.
I got to get the came in office.
I'm just came in my hospital room to sit.
Um, that's a lot of people who want to be here.
Uh-uh.
Um, you know, if you skip another day, um, she said, I'm going to give you the rest of the day,
which you need to understand.
It might be a no norm.
She said, if you skip another day, I'm going to have to send you home and you got a way to come back.
And, um, and then after that, I just started conditioning myself to do whatever I was.
I think it's, it's human nature.
It's our humanness that we do get overwhelmed sometimes.
And I think that's okay.
There are situations that overwhelm us and bring us sadness.
So, and, and, and, and I certainly understand that.
I think what we want to do in our conversations is to give our people who are listening, uh, hope that, you know,
even, even when you're down and like beat you up that you can, you can make it back.
Oh, yeah, absolutely.
Well, I think one you have to, uh, at some point, uh, realize that you have no control.
And what you do have control of, you have to really take it seriously and brace it and, um, and want to fight.
Yes.
You know, I don't know that if I got diagnosed today, if I would have that same fight of me, you know, I wanted to live.
Um, I wanted to live as much of a normal life.
What I thought was normal as I could.
And so I read everything.
I, you know, researched everything and, um, talked a lot to doctors and, you know, joined support group.
I joined the Lucas Foundation.
I did things like that, um, to try to be as educated as I could.
And then she had an awesome, um, to get.
Well, I had to, I had to, I had to, I had an empathetic father.
Oh, my God.
Who would get in the bed with me and cry.
Oh, my God.
My mother would be like, why are you in a bed?
You need to get out.
Keep going.
Push yourself.
And wasn't that a wonderful balance?
That was the balance you needed.
Or we all need that, that, that's really what's really what's all right.
What's all this about?
What's your new normal?
What's, what's a new normal?
Oh, my new normal now.
Um,
well, taking medicine every day.
Okay.
Uh, but the rest of my life, um, have to go give blood work every three months.
Um, and I don't do it, but that is supposed to be my normal.
Okay.
And let me sit here today.
You are experiencing what?
Um, today I have, um, an effusion that I do because, um, my immune system was severely low
about, um, almost a year ago now, it was like a three percent.
So now I think it's up to about 25, 30 percent, something like that.
So it's, um, it's getting better, but yeah, I have to do this once a month.
Um, and, uh, and you know, what's up with some, um, I still don't have a hundred percent
feeling in all of my toes.
Um, and just, um, you know, I, I, uh, I, uh, I have bad.
I have about, I have about.
So my, I had an episode, I want to say, I think it was almost three years ago with it.
With Lopez, I had, um, I lost all my hair.
Actually, my mother was all in my scalp and saw that I had a, uh, a ball spot in my head.
Wow.
And, um, I lost all of my hair out of my hair.
And then I ended up, um, well, it's about three years ago too.
At the same time, got shrugens.
So when the relapse that I had, I entered a lose in my eyesight and my left eye and, um, I lost all my hair.
And I would say that was probably the hardest time when I lost my hair.
Because I had never, well, I had, when I had chemotherapy, I did lose, well, when I was early diagnosed with lupus,
they did a trial on me.
And I did, I almost, I did a year or longer, a chemotherapy.
Okay.
But I never did such high doses that I lost my hair.
In fact, my hair was growing like weeds.
It was beautiful.
Okay.
Um, but I would get sick with the chemotherapy, but I would be sick for the weekend and I'd be back to normal.
Because, um, it would last for like six, seven months and then I fall off.
I have a relapse.
I go back to the hospital, get back on steroids, back him up, fall off again.
That was just my life for years.
So one year he went rehabilitation with five times at the same time.
I was in, um, yeah, no, I went back to rehabilitation and told her three times.
The last time, well, we were four times.
The last time I checked myself out, but, um, I got mad.
But I was constantly going back to swap.
And, um, they're supposed to put you in runs with people that are, that are like where you all have some, you know, some similarities or whatever.
And they had put me in a room for lady who was in cognitive.
Oh, okay.
Yeah.
Like cognitive skills.
Um, not cognitive.
In continent.
Oh, okay.
And I, I was so.
So I checked myself out.
That's why I felt like I knew how to do my own rehab.
I've been so many times anyway.
We did.
We have to redo the bathroom and make it.
Yeah.
We'll cheer us up.
Yeah.
Yeah.
Yeah.
Yeah.
Yeah.
I have been minding that yeah, that was my normal.
I think I was in a wheelchair for well over a year, year and a half to a year.
And then I went from a wheelchair to the brace.
Um, I refused to do the cane.
I don't know why I thought it was better.
No, I did the walker.
Remember.
I refused to do that.
I don't know why I didn't want that four-pronged cane.
I refused.
That was just you had no, no, not doing that.
Now, I'm going to ask you our word for this episode is resilience.
Right.
And so I know how resilient you are.
I want you to tell our listeners how resilient you are.
They've heard you're new normal.
They've heard you're struggles.
You're your lowest points.
Or you lead a life that a lot of people would just want.
Let's tell us.
Okay, should I give you the key like a little hint?
Yeah, I can kind of have been doing.
Well, last couple of months, you've been doing that teamwork all around.
Traveling.
I think you traveled more in the last few months.
Some people will love you.
Yeah, I'm a child.
Yeah, I'm a kid.
Yeah, I have her traveling.
But I can honestly tell you this, I never stopped living.
Whenever I was able to go, I kept going.
I mean, I remember like, I told my mom, I was like,
I want to go to the zoo.
And we had heard that the African's the most
disappointed.
At Brookfield Zoo had, they said they had an African safari.
And we thought that it was going to be lots of animals out there.
And I wanted to go.
My mom took me and we went to the zoo.
She in a wheelchair and me pushing.
Exactly.
I took the light still in my wheelchair.
I just kept living life.
And whatever my circumstance was, became my normal for that duration.
For some reason, I'm not quite sure why.
But with my loopholes, I have exacerbations.
And they come and they might last for six months.
And then I was just going away.
And then they'll come back.
And then I just go away.
Never quite getting back to that original baseline.
But never so far that I can't recover.
And so I've always kept going.
And I think the hardest time for me was when I started having panic attacks.
And the last we last I had when I lost my eyesight.
And I really became dependent.
Very, very dependent.
Almost really couldn't, almost work.
And that was very hard for me.
Couldn't drive, couldn't see the screen.
And then when I lost all my hair, all of that in the same period.
That was very, very difficult for me.
Mentally, that was the first time I ever had to get on any press.
OK.
Then we were fighting about why her.
And I was like, what do you want me to have?
Do you want to give it to me?
And I said yes.
Yeah.
I love it.
And I said, you said, you take it.
It's like, I mean, I will.
I said, I have less life than you have.
I would gladly take it.
It's like, good.
So, to your mother and I are very much best at burgoing us.
Let people yourself walk by your bootstrap.
Keep on going.
And one day I said to Jimmy something like, you can do this.
They're trying to pep him up.
And he said, stop talking that crazy stuff to me.
I can keep telling me to pull myself up by bootstrap.
Well, I don't have on any damn boot.
LAUGHTER
And I thought, OK, you're right.
OK.
But I think you do need a little of us.
Oh, yeah.
Yeah, you need it too.
But you also need that other part.
But Erica, you have friends.
The lower you, such a warm dynamic personality.
And just a warrior.
When did you get your doctorate?
When?
Oh, I got my doctorate.
Is this your doctorate?
Is this journey, too?
No, no, no.
Well, yeah, because you had a fin diagnosed with pimpagus.
And you had something else.
Because as soon as you got ill, I mean,
as soon as you got married, then,
to be said, you were ill again.
Remember, he tried to cut you off the insurance.
Oh, yeah.
But that's when I was getting challenged with loopholes.
With loopholes.
Yeah, I got my degree in 2000.
I got married in 2000.
I was starting.
I was having symptoms or something,
because I didn't have insurance.
I didn't have insurance.
I moved back here.
And I was going to Cook County.
I can't remember what my symptoms were.
But it wasn't a diagnosis at that point.
And I was a quite everyday.
You don't know what day it could move.
You could walk.
That was with the loopholes.
Yeah, that was with the loopholes.
I was just a man.
That's when you went to university.
I was going to go to school.
I called him and said, well, get yourself.
Because I was like, we're out of drunk last night.
Or what happened to you?
Yeah.
And you like, like, no, I wasn't.
It's totally a mother's question.
Well, you know, who kind of picked me up?
Remember I was in the apartment, living at 1610.
Yeah.
The people probably a, I think it's like one more day we can.
But actually, I was working any more.
I was on business for Texas.
And the people brought me some food from barbecue.
And I said, come eat this.
And then I moved out to the hospital.
Oh, no.
So I ate.
And then I went over to the university of Chicago.
Oh, of course.
And then it was after that as a journey.
And then we went back and packed up my place in Texas.
And I was sick then.
Yeah.
Yeah.
You know, yeah.
And we're back.
You made me do all the work.
Good.
Let's go.
Let's go.
Let's go.
Yeah, yeah, yeah.
We got to, we got to, for another month's rent over here.
So Erica, you know, how near and do you are to my heart?
But what part did networking play in your week?
And you did a recovery because I know you talked about that.
You joined the Lucas Society.
I mean, you did more than join that.
I mean, and you did more.
You played a huge part in your recovery even up to the point of having
a stem cell, which your doctor, your favorite doctor, didn't have support.
Right.
Right.
So how did you overcome that when your doctor tells you no, I don't think you can do
that.
Yeah.
I remember, I had a relapse and I was in the hospital.
But this particular relapse was really bad.
And the doctors came in and they were like, we think that you're probably going to be
in a nursing home in about five years, because I was just set back to back to back to
back.
We left.
And the came up, what would happen is the, they would give me high doctor's and substerroids.
And I would go to the hospital at this point.
I would go so often that I was just saying an emergency.
But if you just give me my steroids, I could have put a three days.
That's all I need.
I already know what to do.
Because I would go in and I couldn't walk.
But by the time they gave me my prednisone, that third day I was walking out the hospital.
Absolutely.
And so the doctor said, we can't continue to give you this.
And you know, you got to be in this.
And I called my mom and I said, mom, that I need my laptop, bring my laptop.
And that's all I started reading.
And thanks for going on Google and again.
No, right?
That was.
Google was my friend then.
But at that point, they had diagnosed me with, there was something else in it.
It was the normal lightest optical.
But that was affecting my eyesight.
But it was something that was impacting my spinal cord.
I forgot what it was called.
But it was some other kind of immune system.
It was some other immune disease that was impacting my spinal cord.
It was what I felt like I could, you know, I was going to get to a point where I couldn't
take care of myself.
And so I started just, I actually, I can't remember what it normally, I called the doctor.
The doctor said, they actually came up with, yeah, it was normal.
You did all the research and you found the doctors that were doing the studies that they
were at.
Or they fought more.
Yeah.
What was it?
No, they were at John Hopkins.
John Hopkins.
John Hopkins.
I think you thought they had neuro, neuro.
I call it the actual doctors.
So normal lightest optical is very rare.
Very few people actually research through the research.
And so they diagnosed me with it.
And I want to say it was also attacking my spinal cord, but it wasn't neuro.
It was something else that was attacking my spinal cord.
Anyway, I found the doctors who had discovered the autoimmune disease.
And I asked them, I reached out to them.
And I was actually going to go to the hospital there.
And then they said, no, you don't have to do that.
Then we just read your paper.
So I gave them access to my records.
And they read my records.
And they said, no, you have the right diagnosis.
Because I just wanted a second opinion.
So then once I was officially diagnosed and the official feedback was, I was going to
be in a nursing home for five years.
Then I started looking for.
Within five years.
Within five years.
Within five years.
Within five years.
I started really looking for cures.
OK.
And what to do to just slow down the progression of the disease.
Because I knew there was no cure.
But what could I do to slow down the progression?
And then I started reading about stem cell transplants.
And John Hopkins had a trial.
And then I found one in Northwestern.
His name was Dr. Burke.
But the thing about it in order for you to become a participant
in the trial, because at that point stem cell was doing in these trial phases, you had
to be referred.
So when I got out of the hospital, I asked my room with theologist to refer me.
And he said that it was in his infancy stage.
And he didn't think that I would be a good candidate for it.
But I felt like I would be a good candidate for it.
And what did you do?
So for about three months.
That was more about six months.
Yeah, I think it's six months.
It was six months.
I called the Dr. Burke's office every week.
And I talked to his nurse.
And I kept asking his nurse, was she like, was she giving an appointment?
She kept saying no, no, no, no, no.
Finally one day I must have caught on with that.
She said, I'm going to ask the part of his scene.
And if he says no, you have to accept that you have to find a doctor to refer you.
And I said, OK, that's fine.
And Dr. Burke said he was sending.
And then he saw me.
And I became a good candidate for it.
Because at that time I had two autoimmune diseases that would fight me.
OK.
There was normal, a lot of software and the loopers.
This first, my life, my life.
That's what my life is.
My spinal cord.
Yeah, three things.
I had three things.
Wow.
I had three.
And I come to the conclusion that autoimmune simply means I don't know.
Yeah, I know.
Absolutely.
Because with all of those things that were going on with you, all at the same time.
Yes.
Nobody.
I mean, you know, and then there was no team that did all of those things except during
the research phase.
Right.
And so Dr. Burke, it was really like.
And I thought that two of us, the people at John Hopkins said, we think you have a Dr.
Burke there that's doing research too or didn't know.
OK.
I thought they had referred or thought that you might see of no.
And I didn't have anybody at Northwestern that studied my life.
Because actually when I first got diagnosed, you know, I was needing at that point when
they thought it was when it was loopers, it was a rheumatologist.
But when it became more neurological, I needed to see.
And they had two people who was seeing people like myself.
There's a female doctor and a male doctor.
The male doctor, I've got so many of them.
I can stand them.
I've all the letters I have.
Female doctor, I can't remember her name, but I would have liked her.
I had a lot of respect for her to work with me.
And then she ended up moving to Tennessee.
Oh, wow.
And at that point, they had not really invested a lot into the neurological department at Northwestern.
So I just basically stopped sending neurologists and just kept with the rheumatologist.
And then, but when I got ready for the stem cell transplant, they're neurologist.
You know, the neurologist was started really advancing.
And they started putting money into it.
And so Dr. Burke, I was able to say, I had a neurologist assigned to me for a short period
of time when I was there.
Yeah.
Yeah.
But the Dr. Burke was the miracle partner because he took me and he basically made it where
the two diseases stopped fighting.
Even I couldn't.
I wasn't cured.
Right.
I just had a look.
Okay.
But you were also his state project, right?
I was.
He wasn't in a book.
That's what he's having.
He's got a full sample.
He's called miracles.
Oh, wow.
Yeah.
He's in a lot of people books from the first day.
I should have been his very first patient.
Yeah.
And I've had to hand or my life is not to be.
Yeah.
So Erica, did you discover any unexpected sources of comfort and, you know, that really
helped you that you would recommend to others?
Um, dogs.
Dogs help me.
Yeah.
I bought two dogs, Kennedy and Clinton.
I had them for 16 years.
Um, and then I think also, um, I had to learn that your friendships, um, you have
friendships for different people do different things.
People there for you in different ways.
And so what I had to learn is that, um, I needed to rely on people, but I needed to rely
on people who could do the things that they really, but their personality allows them
to do right.
And so that meant that I had some friends that were real good at when I was in the hospital.
They look out for me, right?
I get out of the hospital.
My not here for months or whatever.
And then I had those friends that, once I got out to hospital, they were right there
at the house.
The friends that would call and check on me every weekend to see if I needed anything.
Um, so I think what I learned that was unexpected was that everybody doesn't have to do everything.
Um, and that doesn't mean that they're not your friends, but that, that just means that
you rely on people for the things that they can do.
And I love that.
I, I'm really going to go home, Erica, and think about that tonight because that is so
real.
That is such a realistic statement because many times you've disappointed with our friends
because you came to see me at the hospital like you said, not only even here for you, but,
but to accept that that's my gift.
But Teddy's going to call you if she's my friend and she's going to come over and bring
me some food.
And that's her gift.
She's got to come to the hospital.
Right.
And we'll be able to look at people that way and accept that as feeling.
Thank you for that.
That's something for me to assess in my own life.
I mean, it really is because we do when we really like people, it's even the same thing
with a spouse.
We can't expect them to be our everything.
Yes.
And nobody could be your everything.
Even you are not your everything.
That's right.
So many times, you know.
And, you know, and so it's really, that is, that's really, that goes into our wisdom
bag.
And we pulled out one out.
It just, it kind of reminds me of being grateful in the gratitude that you find all day.
It's not from the same person or the same thing is that miss so it so brings me grapes.
I'm grateful for that.
But, you know, she doesn't bring me a hand or whatever, but just to accept people for
what they bring you.
Exactly.
Well, I think we've had a really good conversation to Erica and I would like to ask you, you
know, do you have a vision for your life going forward?
And how, how does that vision, you know, help you with your healing?
Because certainly, you know, the things that you've gone through have allowed you to experience
a lot of ups and downs.
I'm certain like you talked about antidepressants.
You talked about, you know, seeking services and, you know, having other people to help
you out.
And I think that's like that going forward.
How do you think you'll be managing?
Because this does not sound like a disorder that's going to, like you said, be cured.
So what is, what is your goal for happiness?
That's interesting because I really don't know what my goal is for happiness.
I know that I'm in a stage of life right now where it feels kind of scary because I am
alone.
And I'm afraid of, yeah, I mean, honestly, I'm afraid of being alone when I need help.
And so I'm at a point where to be quite honest, you know, I'm afraid because I think about,
you know, every three years and so I'm like, look for the next relapse.
So what's the next relapse going to be?
And then I think about, you know, with me not having children and, you know, sister
living out of town and rob a rob a block.
I just feel like, you know, I got to figure this out.
I got to figure it out.
And so I feel, I do, I feel probably more alone now.
And so trying to figure out what's going to bring me happiness.
I don't know, which is why I'm starting to do things.
I want to go and try to do some things on my own by myself so that I can make sure that
I, you know, I guess I can convince myself that I could be happy by myself.
What kind of things?
I don't know how that means.
Because as I listen to you, I have that suffer from the illness that you have.
But being 72, almost 73 years old.
And now I'm an only child.
My parents are both deceased.
I have, you know, no siblings, of course.
But I often have those same fears of what does that look like down the road when you're
by yourself.
But I'm real comfortable.
And I think you are too with who you are.
You're very comfortable with being Erica.
And you, and I'm comfortable with me, but I don't know what that looks.
Right.
I don't know how to do that.
That's perfect.
Yes, it is.
Yes, it is.
I think there are days you think about it and you just wonder.
But tell me what things are you trying out on your own just to see if you can do that?
Well, I said I'm going to go to a concert in July 19th by myself.
Okay.
I'm going to just try to go out of town.
Oh, wow.
Yeah, I'm going to, you know, try to, I said, you know, obviously it's going to pick up
and like go to the movies or whatever it is that I want to do.
Yes.
So pick it up the phone and call it a girl thread.
Right.
And go eat, you know, sometimes now, you know, I would call somebody always to, if I'm
going to go off, go to happy hour at the work or whatever, I just go by myself.
I try to and not be so quick to pick up the phone to ask for somebody to help me.
And I'm just trying to, because I'm not afraid of being alone.
I'm afraid of being sick and being alone.
That's what that's what I'm afraid of.
And being a dependent, having to depend on people, because I also work with seniors.
And I see, you know, what things could be.
And I don't think that I'm any different from any of them that I work with that I see.
And so just trying to figure out and trying to just trust them and, and God and the higher
power that is going to be okay, no matter what.
But, you know, not being able to even, like, it's okay sometimes when you feel like,
even though you may not really know all the answers, but you feel like you can see a path,
right?
I don't, this is what I think is going to happen.
You know, this is what I'm, like putting my role in my dice on.
But I don't really have that right now.
And so I think about if I, if things go as they should go, then, you know, my rock right
now is my mom.
And if the goal says should go, then my mom is supposed to look first and I go next,
right?
And I don't know what I do, you know, I never knew, you know, I never expected to lose my
father.
And then, you know, and if I think about it, if I lost my mother, I just, you are survivor.
You would survive.
And you were gone because through the rain, the wind and the storm, you come out on the
other side of it.
But I was coming out on the other side of it, you've always been there.
Yes, I was.
So I feel like preparing yourself financially to be able to afford the type of housing that
would be a higher quality of housing, you're preparing yourself to financially to be able
to, you know, have support.
And I think you still will have your, you know, cousins and, you know, and that is not
going to give up on you no matter what.
I think that she can be there and Brandy's a little wack, oh, that's your sister, but she
loves you.
And so she'll be there.
Kenny, you know, will be there.
You'll have people, I mean, you always build the absence of the love of a parent.
I mean, that truly, because when I lost my parents, you know, I always said I felt like
an orphan and people would say, you're a full grown woman, a woman, how are you going
to be an orphan?
But it's like, I don't like that.
Yeah, like somebody I couldn't, that holds my history that could tell me this is what
you did or you're just like your grandma, you're just like your sister better.
Oh, you've done that since you were five years old or, oh, I see your growth or I see
your, your stock, you know, those type of things when my mother would say, oh, it was wrong
with you.
You're twirling your hair or oh, you just cut your hair and severe hair cut, something's
going on, you know, things that she would recognize.
And so no matter, even when you have your own family, when you lose parents, it leaves
a hole in your heart that does not, you know, it doesn't heal.
It just gets better.
You get more comfortable with pain is what that is.
But I mean, given that you have issues with sight, envision and mobility, I recognize
it's a lot.
But you know, thanks be to God that you, that every day you get up no matter what struggle.
And you mean, you know, you get out and set about your way and you greet the world with
all that you have and you give back to the community and you get back to the world.
And I know people are happy when they see you walk in.
But Erico is always my child that when we got on a bus and any transportation, she would
get up and say, oh, mommy, it's a grandma.
Grandma needs my seat.
And even when they were white, when they were looking at her, she would say, grandma, you
want my seat?
So anyway, I can see that with that.
Absolutely, absolutely.
Erico, you have been an inspiration to me just having this chat with you because probably
because I was an only child, I have to push myself in the opposite direction where you say
you push yourself to go alone, I have to push myself to include someone else.
That's been a big thing since Jimmy died is reaching out to other people, being able,
because I think both of us kind of are people who are wants to give assistance to others.
And I'll nurture you all day.
Very hard for me to allow you to nurture me.
And that some of our fear too is, what if I have to get to that point that, you know,
my mind is age, you know?
And but it's very hard for me to call up someone and say, hey, there is a party at the
Civic Center, would you like to go?
That's hard for me.
I'll go alone.
I'll do things by myself.
But to make that bridge to include others, because I think it's important, that's a struggle
for me.
That's a struggle.
Yeah.
It's a lot of similarities in that.
Because I think that it all requires some level of comfortability that you have to feel
and allow yourself to go through, you know, whether that's, you know, asking someone for
help, because Lord knows you're going to have to.
Yes.
But you help anyone, I said, I know.
It's such a different feeling when you have that.
But I think we have to let go, you said, you have to learn to let go.
And we have to learn to accept that.
You're somebody else, the blessing of helping us.
Because we take that away from them when we don't allow them to help.
Exactly.
Yeah.
I know that in my head.
I know, right?
I know that in my head.
Well, thank you so much.
Thank you.
If you'd like to say anything else or add anything or just, you know, we thank you for
joining us today.
Is there anything?
I appreciate you.
Yeah.
No, I think, I think if anything, I would want to say to people who may be listening that
if you are sick, the best advocate for you is you.
Yes.
And you have to go in and be, you know, you can never be as knowledgeable as a doctor because
you won't understand all the times, but you should feel confident enough to go in and
be able to ask questions.
And when you have a doctor who doesn't make you feel good and doesn't make you feel
as if you can ask a question and they don't look you in your eyes and they don't give
you the attention.
Then I would recommend that you find another doctor.
That's because your doctor has to be someone that you trust because there will be days
when you're tired and you don't want to think, you don't want to do ABC or D and you have
to be able to trust that the person who you're given is authority to give you medicine
to diagnose you as your best interest in heart.
So I would say if nothing else, I learned out of this entire journey that I probably
am my best advocate and to appreciate the ones around you that support you that have
to go through it and try to, you know, be patient and know people being patient with
you.
And don't stop the party.
No, no, no, no, don't stop living.
I know you look like a stop living, not keep living.
Yes.
Not going to miss a party.
Thank you very much, Erica.
Thank you.
So now we've come to the end of our interview and it's likely that you heard the machine
beeping during the end of our discussion and that's because as we interviewed Erica, she
was actually receiving her six-week infusion, which helps to pump up her white blood cells
and platelets.
She still has an audio and new deficiency, which has to be addressed every six weeks with
infusions.
I hope it didn't distract you, but what it does is it actually proves that she really
is a miracle.
Thank you, Erica.
Thank you for coming and thank you for sharing your struggle and your resilience with us.
Thank you for tuning in to this episode of Two Dancing Widows.
Dr. Erica Collins's story reminds us that even in our hardest moments, there's always
a path forward.
If her journey resonated with you, feel free to share this episode with someone who might
need it.
Be sure to join us next time for more stories of love, loss, and healing.
And remember no matter what, keep dancing.
I'm your starry unfolds in the journey.
A view you like this told is told.