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Welcome to the Migraine Heroes podcast, the podcast dedicated to exploring the world of
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I'm Diane Ducarme, your host and a passionate advocate for migraine sufferers and an advocate
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for holistic and personalized care.
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In each episode, we'll dive into inspiring stories, expert insights, and practical tips
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to help you live your best life.
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Let's get started.
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Hello, Cheryl, and thank you so much for being with me today.
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Oh, thank you so much for having me.
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So do you want to share a bit with the audience where you come from and what you do while
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you're here together with me?
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I am based in the United States in the wonderful state of Virginia.
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I've lived here for about 20 years, although I was born and raised in Pennsylvania, and
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we connected on LinkedIn.
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I think we have a real interest and drive and passion for helping women with migraines.
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And I currently have a support group on Facebook of about 7,000 women with hemiplegic migraine
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that I do a lot of advocacy work for.
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If you don't know Cheryl's group, we link it into the bio, a beautiful group of 7,200
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women who all suffer from hemiplegic migraines.
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Before we dive into that, can you explain how you got to, you know, creating that group
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in the first place?
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I first started a Facebook group, support group for moms with children who were diagnosed
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My daughter, I had a 16-year-old daughter and an 18-year-old son.
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My daughter was diagnosed at two, and I realized at that time that I did not know anyone, any
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parent that had a child diagnosed with autism, and I felt very alone and very isolated.
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And I decided I would start a group on Facebook.
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Mind you, I did not know anything about Facebook.
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I'm not exactly tech savvy, but I decided to start this group.
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And it really grew, and I realized the importance of community and having people be able to
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connect and help one another.
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So after experiencing my first hemiplegic migraine, which I will talk about, I decided
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to start the support group for women with hemiplegic migraine, and it just kept on growing.
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And we've had a very good group of women who really support one another, and a lot of times
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families don't always support you for something, especially when you have a chronic illness.
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Friends don't always understand because you're missing events, you can't go to them all the time.
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The community doesn't always understand.
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Your job certainly doesn't always understand, but I feel coming to the group and being able
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to share with other women who have what you have is very important.
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I mean, I really want to iterate that point.
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It is so, so, so true, Sherry.
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I find among all of the women I've worked with globally, if we take all of these four
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things you mentioned, you mentioned family, you mentioned friends, you mentioned job,
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I would also like to add siblings, in case you're a parent with your own family, your own siblings.
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I find there's different levels of compassion, understanding, willingness to understanding,
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and lack of understanding.
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I find friends, if they don't suffer from migraine disease, they really have no idea.
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It's not that they lack empathy, but empathy is the ability to relate to someone's situation.
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And so the best thing they can relate to is a headache, which is they really, therefore,
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do not understand what's going on.
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I find in the family, I've seen, you must have seen this also, compassion fatigue, sometimes
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where spouse can feel helpless and guilty at times, but also tired to take on sometimes
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more chores in the house.
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I've seen people be fired.
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I've seen siblings really gaslighting their own siblings, not in a mean way.
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They don't mean to be mean.
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They just have very little idea or perspective on what they see.
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And so it's so true what you see about the community and the group.
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I definitely believe that.
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And I feel support groups are so important for that reason.
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Yeah, very, very, very important.
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And so you start that group.
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Was this your first title?
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And for like name of the group, was it always Women's Hemiplegic Migraines?
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It started out as Women's Hemiplegic Migraines Support Group.
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And then I had women join from the UK and connected with one of the women there.
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Who I'm friends with to this day and decided to change it to the Women's International
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Hemiplegic Migraine Group.
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And then I still keep it that name, but I've started a non-profit for the group called
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the Women's Hemiplegic Migraine Alliance.
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So it's a mouthful, but there's no way to shorten the title of it.
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No, it is definitely a mouthful and look quite representative of the condition too.
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So at least people find you fast when they're diagnosed with that condition.
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And so you start the group, you put that beautiful name, which then gets an international label
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And how does it grow?
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How does it, you know, what are the first days, you know, I can just imagine you going
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to bed, you know, day by day and seeing that group and those conversations grow and flourish.
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How does it happen?
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You know, I really didn't expect it to grow, but I had such success with the Autism Moms
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group when the Hemiplegic Migraine Group started to grow.
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I wasn't as surprised, but I was pleasantly surprised because I knew that we would be
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connecting, a lot of women would be connecting with one another.
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And for the support group on Facebook, we also have moms of children who were diagnosed
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with hemiplegic migraine.
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Caregivers can also join.
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So that also raises the amount of people in the group.
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And I also really feel strongly about posting positive affirmations for the women in the
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I like to also use humor because I think having a sense of humor, even when you're feeling
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terrible, somehow, some way you have to find your sense of humor and things.
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Humor's the best type of medicine, I think.
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And also sometimes videos, if they're uplifting or educational, I also post educational articles
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for them, especially if it's about chronic or hemiplegic migraine.
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So in the day-to-day, so you work on these positive affirmations, the sense of humor,
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the education, pulling in information for them.
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Do you also have a role of supporting yourself?
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Like when you have new people in the group, do you have sort of long, short exchanges
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with each of the members?
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Do you mean do I support the women in the group?
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I mean, it seems when you and I exchanged offline, you also mentioned sometimes you
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have these direct messages with each and every one of them.
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Was that an exception or do you do that often?
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Well, no, I do that often, but they're not necessarily long messages.
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But when you're sending out several messages a day, definitely take a lot of time.
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But I think that's really important, especially when you have someone who sends out a post.
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I have this the other day where in the chat that we have, there was a woman that sent
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on a post that she was in the hospital.
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It had been three weeks now.
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She had the hemiplegic symptoms.
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She wasn't getting better.
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She really was looking to connect with someone and her name is the same as my daughter.
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So it also caught my attention because of that.
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And I said, you know, I need to connect with her.
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And I put down what I was doing and I reached out to her.
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We had a nice 10, 15 minute conversation and I knew that she felt better by the end
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of the conversation.
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And so did I, because I knew I've been that person in the hospital feeling isolated, feeling
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like I'm never going to get better.
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And it really helps to have somebody on your side or someone you can reach out to.
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And so then if you support people then individually and within the group, then can you describe
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a little bit the load of work this represents?
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Because I think, you know, sometimes we see a group and we find beautiful, but the amount
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of work that goes beyond the scenes is quite extraordinary.
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Not necessarily in the number of hours on a daily basis, but maybe in the terms of frequency,
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you know, and weekends and public holidays when people need the help.
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Can you describe or comment a little bit on that?
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It's really not a nine to five.
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I'm not going to call it a job because it's volunteer, but I can answer a text if I see
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something pop up and I think it's important to answer it at nine o'clock at night, I get
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up very early, I can see something come in very early.
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And again, if it's something I feel I should answer, I will.
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And I usually do within an hour or two.
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I'm not working full time right now and I'm substituting once in a while.
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So if I had less time, I wouldn't be able to pay as much attention as I do.
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But right now I'm in a position to be able to do that.
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But it is time consuming.
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I know a lot of people aren't able to spend that kind of time, especially when you have
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little ones or ones in middle school, but mine are older.
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Yeah, I think there's this philosopher, Cahil Gibran, who says that work is love made visible.
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And I find that there's just so much love that goes into these hours that you spend
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making people feel better, feel less lonely, feel less isolated, feel less outside of the
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norm and therefore provides joy and the support that they maybe can't receive in the real
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life for very sort of usual and valid reasons, yes, yet, you know, a big void.
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But like, first of all, you know, I just say on behalf of your community, a huge thank
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you. I'm sure they have, you know, their heart in the same place as I do.
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I find that extraordinary, the amount of mountains and words and time and sort of
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unconditional love that you provide these people.
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I find this extraordinary.
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I really do. And it takes a lot of courage.
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It takes a lot of patience.
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It takes a lot of relentless energy.
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When you sometimes have your own migraines, you know, to deal with, it's a lot, migraine
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attacks to deal with, it's a lot.
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I appreciate that.
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But I feel very much like this is a purpose that I have in my life.
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And the more I connect with women in the group and the more I feel that doing this
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advocacy work is going to help not just them, but other people who have been diagnosed with
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hemiplegic migraine.
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I know this is what I'm supposed to be doing.
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So to me, I just keep on doing it and enjoy it.
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And I love connecting people together.
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And I love connecting people.
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Yes. And I find you also very thoughtful.
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So Cheryl and I had the opportunity to engage and meet a couple of times already.
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And I find you always very thoughtful on what will suit your community, like to be just
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mindful of them, respectful of them, really understanding their situation and seeing,
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OK, what's what's useful, what's helpful, what's not.
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Do you want to comment a little bit on your studies, you know, because you studied
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something very specific that allows you to have all of that empathy and that sort of
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those beautiful human skills.
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My passion is psychology.
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So I went to Temple University for my bachelor's in psychology and minor in sociology.
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My dream job was to be a forensic psychologist.
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So I had about two years of forensic psychology graduate classes here in Arlington,
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Virginia. And I still have one more semester to go, but I'm not sure about that.
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It's a lot of work. And when you're younger, definitely finish graduate school because
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it's a lot harder when you're older.
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Yes, absolutely. It's very true.
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But, you know, maybe one day, one day.
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Do you mind sharing a little bit how then your journey with hemiplegic migraine started?
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Yes. I started getting migraines at the age of 17.
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It was when I had my period, even though I got my period much younger.
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I went to a neurologist.
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They diagnosed me with migraine and I would keep getting them every month.
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And then it was about 10 years ago that I had my first hemiplegic migraine.
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I was driving with my daughter and I thought something hit me through the windshield.
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I thought it was something sharp and it hit the left side of my temple.
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And I remember starting to lose control of the car.
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I couldn't use my foot on the gas pedals.
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It was very scary.
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I finally was able to get the car to the top of the hill and I knew that I was losing consciousness.
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I got the car into this little general store parking lot.
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The only person there in that parking lot was a retired detective and I was able to honk the horn.
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I get worked up when I tell this story, but when I honked the horn with my elbows somehow
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and he came over to the car and I think with how you can have drooping on the side of your face,
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I looked like I was having a stroke.
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And he was able to make the necessary calls to make sure that my daughter was taken care of.
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And off I went to the hospital.
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So I couldn't talk.
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I was in and out of consciousness.
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I had this droop on my face, which all of these symptoms are indicative of hemiplegic migraine.
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It also can be a stroke, but they tested me for stroke and I was not a candidate.
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But the emergency room physician said I was having anxiety.
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So I got my first experience of being gaslit having a hemiplegic migraine.
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And it was so scary because I couldn't speak for myself.
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And my husband at the time didn't know what was going on.
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And I don't even think the neurologist at the emergency room knew what was going on.
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So it's been a long journey.
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And I'm sure some of that experience ignited my passion to advocate for others
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because so many women in the group have had that experience where medical professionals
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think that they're having anxiety or panic and they're dismissed.
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And that's just not acceptable.
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If you go back to that moment where he says you've just had a bit of anxiety,
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were you speechless?
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Were you able to push back?
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Were you surprised?
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I could not speak.
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And I was also in shock that he thought these symptoms that were so serious,
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I couldn't move half of my body.
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He thought it was anxiety.
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And to this day, I wish I had, honestly, I wish I had reported him
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because it was such a traumatic experience and then to be treated like that.
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And I do recommend in my support group, if you're not treated well,
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find out who the administrator is.
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Let somebody know because that's not acceptable.
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And so many times we just walk away and ignore that.
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Then the next person gets treated like that.
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So I do encourage women and men, whoever is treated unfairly, to make a complaint.
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It's so true what you say, Sherry.
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Sometimes I've discussed with even neurologists taking care of people suffering from migraine disease.
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And, you know, they would say things as absurd as,
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yes, but, you know, you should be very cautious.
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People with migraine, they can have a migraine personality.
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I'm like, excuse me, what's that?
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And they sort of elaborate or they say they can, you know, complain or be bizarre or do say bad things online.
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And I was really, really, really shocked to like, you know, someone with 30 years of experience
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being a neurologist, sort of how they would look at it, just with such little empathy,
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questioning because the curriculum doesn't explain.
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Therefore, the mechanism of defense is an attack, which I guess is very human.
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But it's because I don't understand and because I can't explain to you.
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Therefore, you are the problem.
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I'm not. It's very, very, yeah, a bit masculine way to sometimes as a society to to handle problems.
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I was I was very, yeah, very shocked that people could think that way.
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I'm like, well, if someone comes to you with a problem, why would they make that up?
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And what you know, what do you think is the goal of someone if they're describing to you a full migraine attack,
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that they would make something up like that?
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Like that doesn't make any sense.
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And so I found that empathy is not a when you look at other cultures in traditional Chinese medicine,
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when you want the doctors that were selected back in the days were people who were extremely literate
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to go back into old texts and who had a lot of empathy.
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If you had both, then you were potentially selected.
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I think in our Western world, it's more if you just have the smarts.
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But it assumes that the rest is in the books.
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And I think the whole being able to relate to someone is sometimes missing.
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You know, you're just being expedited and not truly listened to.
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I very much agree.
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And I'm very interested also in the Western Chinese medicine.
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Your website has so much information.
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I'm still reading the article.
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Some of them I'm rereading.
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But I really appreciate the fact that you have such interests
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and have done so well helping others with traditional Chinese medicine.
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I find, you know what, Sherry, I have found that the biggest gems,
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you know, we've had women worldwide with their migraines.
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And sometimes you think a case is going to be simple.
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And sometimes it is quote unquote simple or classic, if there's any such thing.
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And sometimes you think something's going to be easy.
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And it's actually terribly hard
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because the body is actually very different to what you had imagined.
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And I have found that in those moments, when we've been working together
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for three, four months and the woman should feel a substantial difference
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in her life and she's not feeling it,
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which is a massive moment of frustration for me, if it's the case,
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then it's what is going to get us out of there is me listening, her explaining.
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And OK, you feel stuff in your ear.
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I'll give you an example.
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I had a woman called Cassie.
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Cassie was having things that she could feel in her ear.
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She says, I have stuffiness in my ear.
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And no doctor would listen to her
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because the doctors would say we've done the exams, there is nothing inside.
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Whereas I'm saying, OK, if you if you tell me there's something in your ear,
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then we're going to do that.
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We're going to remove physical matter in your ear.
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And it worked. But I would have not guessed it.
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It's really because she explained to me what she was feeling.
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And I find I have that time and time and time again where when I can you explain.
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So instead of gaslighting, it's actually double click.
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What do you mean with that?
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Can you explain in more details exactly where, exactly when?
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You know, is it always before the menstruation or during the menstruation
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or after the menstruation? Is it in the morning?
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If so, what time is your pattern or is it always at noon
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or is it always in the evening or is it sometimes random or does it move?
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Or what other sensations does it come with?
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Because it's all of that that allows you to recompose
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the picture of what's happening in this body.
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And so I find from the moment you gaslight, you've missed 80 percent
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or 90 percent of of the information.
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And therefore you can't truly help the person.
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You can only truly help if you truly listen.
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Because people know they have so much, they have a wealth of information.
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The problem is when they share that information,
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they sometimes tiptoe with me and I'm like, oh, no, no.
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You can go all in.
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Like there's nothing I will overlook or nothing that I will think is crazy.
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You just go all in.
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Like explain what what is happening.
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And oftentimes they've been gaslighted so much that they don't really dare
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explain everything that they feel is going on or is going.
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Yeah, they're going through.
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That's so important.
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It's a super important.
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So important. Yeah.
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Yes, it is super, super, super important.
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And even when, you know, I recently I had a woman in Bali
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and she was saying, but my migraines are regular.
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And I was looking at the data.
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I had the data in front of me and in my data it wasn't.
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But I asked her, I believe you.
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What do you mean by regular?
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Because I can't see it.
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But if you tell it to me, I trust you.
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And she says there every six day, which is extremely rare.
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I've only seen one moment like that every six day.
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And I was like, well, let me compute it.
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And she's like, yes, the food you give me, they displace them.
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They make them do other things.
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And I'm like, OK, good.
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It means we're moving something, but it means I'm not correcting it.
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But can you describe me more?
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And it's through the description and through the empathy that
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and not questioning her if she says it's always at that time.
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I trust her that it's always at that time, except I do something.
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Do you see what I mean?
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I find this is the hard part is woman.
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We say to their doctor, oh, it's always before my menstruation.
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But then when they start tracking, it's not.
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And the reason it's not because their intuition is wrong is
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is because it's going to depend on additional factor
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that are going to weave in on top of their cycle
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and depending on the prioritization of some of their systems.
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It's not to be technical what I see.
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Then the food is going to be a trigger and the migraine is going to occur.
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So, for example, they might say a wine is a trigger.
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But then when they look at their data, wine isn't always a trigger.
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But if you look at the overlay of wine plus the cycle
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and how much toxicity was there in the body on that day,
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then you get to data that is extremely accurate.
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So women can look erratic from the outside
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or look not making sense from the outside.
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But if you look and you take into account the prioritization
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that goes inside the body, they're extremely rational.
[23:43]
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[24:32]
So I'm with you that all of that gaslighting for me is a knee jerk
[24:36]
reaction of not knowing what to do.
[24:39]
Therefore, you're the problem.
[24:40]
I think that's unfair.
[24:41]
People should say, I apologize.
[24:43]
It's 2024, soon 2025.
[24:45]
We should know this by now.
[24:47]
I apologize on behalf of the scientific community or my profession
[24:51]
or the curriculum I have received.
[24:53]
I cannot read or understand or help you at this stage yet.
[24:58]
You know, I think that should be the answer.
[24:59]
Not, you know, you have a disorder.
[25:02]
I wish that were the answer each time.
[25:06]
And I wanted to also bring attention to the issues
[25:11]
the women have in the group.
[25:13]
And I'm sure men also with hemiplegic migraine as well have these issues.
[25:20]
It can be very hard to hold a job down.
[25:25]
Chronic illness, especially one like hemiplegic migraine.
[25:30]
And, you know, we've never gone over the symptoms, but you have symptoms
[25:35]
that mimic a stroke when you have hemiplegic migraine.
[25:38]
So you actually look like you can be having a stroke.
[25:42]
And those symptoms can last a very long time.
[25:48]
For some women, it could be a few hours.
[25:50]
For some, it can be months.
[25:52]
So it is a very debilitating illness.
[25:55]
And there are women who have had to leave work.
[25:59]
They've tried to apply for disability.
[26:02]
It's very hard to get disability now, even with a disease as serious as this.
[26:09]
But I think with more advocacy and more people understanding how serious it is,
[26:15]
we should be able to get disability.
[26:17]
And that's something that in my advocacy efforts, I try to, would like more
[26:22]
people to understand and help with.
[26:25]
Because if you're sick, you can't work and you need that financial support.
[26:31]
It's so true how debilitating it is.
[26:36]
It takes over your entire life from all angles.
[26:41]
It takes everything.
[26:42]
And it's just so hard.
[26:44]
And I sometimes when I explain to people what I do, I mean, some people,
[26:48]
there's a bit of two categories.
[26:49]
Some people, they're trying to be polite and smile.
[26:51]
And I'm hoping I really stop talking really fast because they find me very boring.
[26:56]
And some people, they ask me a lot more questions.
[26:58]
And at which point, of course, they know either someone who has them
[27:02]
or they have migraine themselves.
[27:03]
But otherwise, it's unrelatable because it's so invisible.
[27:07]
Now, in the case of a hemiplegic migraine, it's very impressive.
[27:10]
Like what happens is shocking and therefore is also really hard to hide.
[27:14]
But the rest of the time, the migraine is quite invisible.
[27:17]
So it's so hard to explain and to be taken seriously for a disability.
[27:23]
Although it's proven that it's the first cause of disability worldwide under 15.
[27:28]
So if you take the whole sort of migraine disease as a whole.
[27:31]
I want to share with you the story of Jade.
[27:33]
Sheryl and I exchanged on that story.
[27:36]
I want to share it with your audience as well.
[27:38]
It's a beautiful story.
[27:39]
So Jade is a very young woman living in Australia,
[27:42]
out of memory, around 27 years of age.
[27:45]
And by age 27, she had had three hemiplegic migraine crisis.
[27:49]
So she describes it beautifully.
[27:51]
She says, look, it looks like a stroke.
[27:53]
My body goes half paralyzed.
[27:55]
I fall on the floor.
[27:56]
I lose my eyesight.
[27:58]
And her parents, who did not have migraine disease,
[28:01]
had to call the ambulance.
[28:03]
The ambulance had to put her on a bed because she couldn't even sit.
[28:07]
And they would give her what is called in Australia, the green thistle,
[28:10]
which is the highest dose of morphine to try to manage pain,
[28:13]
which would knock her out for three days in which during which
[28:17]
you would have mediation cocktails at the end of which you would wake up
[28:21]
with sort of this sort of you'd feel a tenth of a diagnostic,
[28:25]
which is you've had a migraine attack.
[28:27]
It's like, what? Like, you cannot be serious.
[28:30]
When I met Jade that day, she was feeling quite desperate.
[28:33]
And she goes for a walk and she
[28:36]
she always listens to a podcast during her walk.
[28:38]
And she just does a bit of a roulette, you know, and she's just bros in one go.
[28:42]
And then she sees a podcast that I've done on PCOS and migraine.
[28:45]
And she's like, oh, that's a funny title.
[28:49]
And and she goes for her walk and and coming out of the walk, she takes the test.
[28:53]
And the reason why I bring her up is because we started working together.
[28:58]
And after two weeks, she gets fired and she calls me and she cries and she says,
[29:02]
I'm going to have to stop working with you
[29:03]
because it's going to put me in massive financial trouble.
[29:06]
And I talked to her and I said, Jade, this is not about the money.
[29:10]
I want to get you on your two feet.
[29:11]
So here's what we're going to do.
[29:12]
Number one, you're going to stop paying me.
[29:14]
Number two, I'm going to, you know, solve this migraine issue.
[29:18]
Number three, you're going to get back and get a job.
[29:20]
And number four, you'll pay me back.
[29:22]
And all of that happened within the space of four to five months.
[29:26]
And she she was in that call.
[29:29]
She said, what, you're going to do that for me?
[29:30]
I'm like, absolutely.
[29:32]
Your life, you have to live it like you can't stay like that.
[29:35]
What does it mean?
[29:36]
Now you have no more finances.
[29:38]
You can't afford to care anymore.
[29:40]
And you're going to stay like that.
[29:42]
No, that's just not acceptable.
[29:43]
And if I don't help you, I literally don't know who will be able to.
[29:48]
This is what I do every day.
[29:49]
And it's a really weird job that I have.
[29:53]
And as a beautiful story, beautiful.
[29:55]
And so inside the app, she sends this beautiful picture of her and her mom.
[29:59]
And she was having a first holiday with her mom without migraines
[30:02]
because she would still experience them in between massive attacks.
[30:07]
When you have that change in your life where you have a decrease in migraines,
[30:14]
It's life changing.
[30:16]
Yeah, and it's life changing for her.
[30:19]
For me, Sheryl, it is life changing, too.
[30:23]
You know, I think for me, it's always my first.
[30:26]
I don't say that lightly.
[30:28]
It's always a first because it's her life.
[30:31]
It's all of her life.
[30:33]
Each time we take a new person on board, I always tell my team,
[30:36]
I don't care about the overall statistics.
[30:38]
Yes, they're important.
[30:39]
But, you know, 80 or 90 percent success rate is not enough
[30:42]
because for every single one of these individuals, this is 100 percent of their life.
[30:48]
And so we have to try really, really, really, really, really hard.
[30:53]
And if it's harder than we go, it's more, more brains, more power, more,
[30:58]
more books, more documentation, more listening, more
[31:02]
until we until we make it work, because it's 100 percent of each
[31:06]
and every one of their lives.
[31:07]
Yes, it was at least it was extremely special for her.
[31:11]
It's always is extremely special for me,
[31:14]
because also I know that I took her out of poverty line.
[31:17]
I took her out of inability to have a happy relationship.
[31:22]
I took her parents out of anxiety of seeing their daughters.
[31:26]
So conditions like that took her out of her nest.
[31:29]
A lot of the women I take care of, they initially work, live with their parents
[31:33]
because that's the only possibility they can financially make it work.
[31:38]
And so just like you hold all of these women hand, we have so much in common.
[31:44]
I hold their hands, too.
[31:46]
And so day to day, that's why I was asking how many hours does it take you?
[31:49]
Because the support is such a huge part.
[31:52]
It's a very time consuming one.
[31:55]
When you know you're helping the people that you are,
[31:58]
it inspires you to keep moving forward.
[32:01]
Yeah, it feeds your soul.
[32:04]
And so do you have some dreams?
[32:07]
What are your dreams?
[32:08]
I think you've talked about education.
[32:10]
You've talked about advocacy.
[32:11]
What are some of the dreams that you have for the group?
[32:14]
I started the nonprofit
[32:17]
called the Women's Hemiplegic Migraine Alliance,
[32:21]
and I would love for that to grow and be able to have funds
[32:26]
to support women who need money for medication,
[32:32]
who may have lost their job, who may need funds for therapy.
[32:39]
That's a long way off.
[32:40]
But, you know, you always need people supporting your nonprofit
[32:45]
if it's going to go anywhere right now.
[32:47]
That's that's my focus.
[32:49]
And also hopefully working some more hours, too,
[32:53]
just because I think that's healthy, even though it's hard with migraine, for sure.
[32:58]
So I'm walking my rescue puppy and my, well, she's not a puppy, she's two,
[33:05]
and taking care of my cats and just living life.
[33:10]
Yeah, yeah. It's a pretty good way to frame it, just living life.
[33:14]
Yes. And what you say about, you know, money is a big one.
[33:18]
I find it's a tricky one.
[33:19]
And one of my dreams is that I don't have it exactly here in my mind,
[33:24]
but of a sort of a pay forward system where someone who is now on their feet
[33:28]
and working is paying for you because someone paid for them before.
[33:32]
I think that would be a big dream.
[33:33]
That's lovely. Yeah, it's forward.
[33:36]
Yeah. So like someone who is out of their migraines has paid for you
[33:40]
to be on your feet and the day you are on your feet and you have that money,
[33:44]
then you paid forward to someone else, to the next person.
[33:48]
And to have a system like that, that is one of my, yeah, that's one of my dreams.
[33:52]
Because one of the big choices, and you and I have discussed about this,
[33:55]
one of the big choices I've made is we are completely bootstrapped.
[34:00]
We're self-funded.
[34:02]
The reason is when I started this was 2019,
[34:05]
there was a lot of money everywhere for startups.
[34:07]
And because I studied in good places and I've had a good career before,
[34:13]
I could raise money from about seven investors.
[34:15]
And I decided to meet with them to understand what was making them tick.
[34:19]
So oftentimes they would open their checkbook and say, how much money do you need?
[34:22]
And I'm like, oh, I'm not I'm not here for that.
[34:24]
And like, oh, I thought we were meeting to raise money.
[34:26]
And I'm like, yeah, well, I'd like to get to know you.
[34:28]
It's like, oh, this is an interview.
[34:30]
I'd like to understand, you know, sort of your values, what you stand up for.
[34:33]
If we're going to do this together,
[34:35]
I want to know that we're in for the same reasons, if that makes sense.
[34:39]
Then the conversation would take different shape of turn.
[34:41]
And one of them, he said, oh, you solve the problem.
[34:45]
And he said, oh, that's complicated.
[34:48]
Can you make them sick longer?
[34:50]
And in that moment, and I understood the reality check of the best way
[34:54]
to make money is to keep people in the same states, but have them pay
[34:58]
like a subscription model to medication of some sort.
[35:01]
And I thought, oh, wow.
[35:02]
Like if they need to sell for money, I want to solve migraine.
[35:05]
It's not the same venture.
[35:07]
I want to solve migraines.
[35:08]
I do see what I mean.
[35:10]
Like if I want to make money, then I go ahead and I do that.
[35:13]
You know, it can take many shapes or forms.
[35:16]
There's plenty of ways to do that.
[35:18]
I think there's something really unfair going on.
[35:20]
I think it's just not acceptable.
[35:22]
It is not. I'll repeat.
[35:23]
It's not acceptable.
[35:25]
We're going to be able to go to Mars.
[35:27]
I really think we will.
[35:28]
So why can we not really listen to women and men and help solve the problem?
[35:34]
And so this is the problem I wanted to solve.
[35:36]
And so that thing forward and, you know, finding ways
[35:40]
that we can self-support one another is important.
[35:45]
But we find the way.
[35:46]
Where there's a will, there's a way.
[35:48]
Yes, I really believe.
[35:50]
It's just sometimes a little bit of patience, a little bit of meeting the right people.
[35:53]
If you know people who are really into this issue
[35:56]
and are great investors with a big, big heart that want to do good,
[36:00]
then, you know, always let me know.
[36:02]
I believe there are.
[36:03]
And so and so these are the type of people that we'd like to change the world with.
[36:08]
So I share your passion for education, philanthropy, for paying forward.
[36:13]
When you started Sheryl, like you had an idea and you got to going.
[36:17]
I think a lot of the audience here.
[36:19]
And by the way, you got going.
[36:21]
And that gives you that nurtures you day to day.
[36:23]
We've met a couple of times and it really strikes me that you're giving
[36:27]
a hundred percent of your soul to to that community.
[36:31]
And it's giving back to you in its own way with the joy
[36:35]
and the sparks of laughter, with humor, the sparks of education,
[36:39]
with the videos, the sparks of support with the group that you're giving
[36:43]
is giving back to you.
[36:44]
The audience that we have, I'm sure they said they suffer a lot.
[36:48]
How would you encourage them to get started
[36:52]
and feel they can make a difference within their passion?
[36:56]
What would be your advice for them?
[36:58]
Well, I think that really believing in yourself,
[37:02]
but also just trying, you know, there's an expression
[37:06]
and I'm terrible with expressions, but it's about if you don't take
[37:11]
the first step, I don't know, I should break them down.
[37:14]
But you've just got to try because you'll never know unless you try.
[37:20]
And if my friend hadn't been actually, she was my daughter's case manager.
[37:26]
She encouraged me to start that Facebook group for moms.
[37:31]
I really wasn't sure about it, but I just had one person
[37:35]
encouraging me and I started it
[37:38]
and it turned out to be wonderful for so many people.
[37:43]
And for the hemiplegic group, I felt so encouraged
[37:48]
because of this woman that I decided to do it.
[37:53]
And I think women especially need to support one another.
[37:57]
And if you've got a good group of women behind your back,
[38:02]
I think you'll go a lot further,
[38:04]
especially women who share the same common thread.
[38:08]
Even if it is chronic illness, we can help one another.
[38:11]
And that's one of my big mantras in life is, you know,
[38:15]
we we rise by helping others.
[38:18]
Martin Luther King, just love him.
[38:20]
So that's a message I like to give.
[38:24]
It's so it's so, so true, because that's also how I found you,
[38:28]
how you put your intent out there and you put your dreams out there.
[38:33]
And that's how, you know, we find each other.
[38:36]
And also, I love to take a first step just to share a personal story.
[38:39]
When I wanted to start, I didn't know I had had a few people with migraines,
[38:43]
but I didn't know, was it coincidental that it worked or
[38:46]
was the extent to which it's feasible?
[38:49]
And so my first trackers were paper trackers.
[38:52]
I didn't have the means to do anything.
[38:54]
I also wanted to just test and and I learned so much.
[38:57]
I learned so much.
[38:58]
I still remember vividly one of the first woman I worked with, Jessica,
[39:01]
I had I had drawn a little circle and she could write a color.
[39:05]
She could color the little circle depending on her pin level.
[39:08]
And she comes back and she submits her paper trackers.
[39:12]
And there's a whole rainbow.
[39:13]
She's she's colored the whole rainbow.
[39:16]
And I'm like, whoa, whoa, whoa.
[39:17]
Jessica, I was more thinking like a red light, an orange light, a green light.
[39:22]
But clearly my assumption was wrong.
[39:24]
Can you explain to me each colors of the rainbow?
[39:27]
And this is, you know, and then she would describe
[39:29]
so many different types of pains and level of pains and notions
[39:33]
and variations of, you know, what a migraine attack is.
[39:37]
So, yeah, starts really small.
[39:38]
Put your intent, put one foot in front of the other.
[39:43]
I think if it's your passion, then one I really like from Bill Gates
[39:47]
is people overestimate what they can achieve in a year,
[39:50]
but they underestimate what they can achieve in 10 years.
[39:53]
So I've been doing this for five years.
[39:55]
How long have you been going for, Cherie?
[39:57]
This, I think, is six years now.
[40:01]
Let's see what our forces also combines over time can achieve in 10.
[40:06]
You know, maybe it's changed an aspect of the planet.
[40:11]
And I think joining forces can only have a positive outcome.
[40:15]
Yes. And so it's quite it's quite special.
[40:18]
So take that first step.
[40:19]
Take your passion, something that you can run with,
[40:22]
that you can wake up every single day and feel deeply excited about.
[40:26]
Sometimes my my children, they're very happy with what I do, etc.
[40:31]
And they're like, wow, you can be very passionate about this for a long time.
[40:34]
Like you solve a lot of really weird situations and sort of one offs.
[40:39]
And I'm like, yeah, I just, you know, gets my brain going and makes me happy.
[40:44]
So take something that makes you happy and go with it and let the flow take you.
[40:48]
So look, Shirley, on behalf of women, men, children who suffer
[40:52]
from hemiplegic migraines and on behalf of people who suffer
[40:56]
from migraine disease in general, to huge thank you for the relentless,
[41:02]
unconditional love and support that you provide them.
[41:06]
Thank you so much for having me.
[41:07]
It was such a fun time.
[41:09]
And look, thank you.
[41:10]
And I look forward to becoming friends.
[41:14]
Sounds great. Me too.
[41:16]
Thank you. Thank you.
[41:19]
Found this episode helpful?
[41:21]
Share it with someone who could benefit from it.
[41:23]
Together, we can spread awareness and support our migraine community.
[41:28]
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[41:32]
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[41:35]
towards understanding and managing your migraine.
[41:39]
Thank you for listening to the Migraine Heroes podcast.
[41:42]
Don't forget to take our migraine tests to uncover your unique profile.
[41:46]
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[41:48]
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[41:50]
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[41:54]
If you love this episode, leave us a rating and share it with your friends.
[41:58]
Let's keep spreading hope and healing.
[42:00]
All the links mentioned are available in the episode description.
