man with skeleton and brain exposed holding head

34 Truths People Who Get Migraines Wish Others Understood

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There are 36 million people in the United States who live with migraines, according to the American Migraine Foundation. A migraine is an inherited neurological disorder characterized by hyper-excitable brain networks that result in attacks. These networks can be triggered by a variety of stimuli including alcohol, light and smells, or they can become spontaneously active. Long story short, a migraine is not as simple as it may appear to be to others.

To better understand it all, The Mighty asked our readers who live with migraines what they wished people could grasp about this debilitating and often invisible condition.

This is what they had to say:

1. “It’s not just a headache.” — Stephanie Richards

it's not just a headache

2. “Chronic migraines are on a totally different level than the occasional migraine. You end up living in fear of when the next one will hit.” — Joey Caylor Spencer

3. “It’s not something I can control, and it’s not my fault.” — Sara Byk

It's not something I can control, and it's not my fault.

4. “Some of us get warning signs that a migraine is coming. I get signs up to a full day before the pain starts. The anticipation of the pain and resulting anxiety sets me on edge. When I know it’s coming, I get desperate for anything that will stop it.” — Melissa Goodman

5. “Excedrin Migraine is a complete waste of time if you have an actual migraine. And yes, three days later, I’m still on the same migraine. And no, I can’t just ‘tough it out.’” — Jen Briggs

no, i can't just tough it out

6. “One can look functional while in a lot of pain. Not all migraines develop into the hang-over-the-bowl, turn-out-the-lights, don’t-speak-to-me-for-four-days kind. We take care of our kids, go to work (mostly) and even drive carpool to school while quite ill.” — Nancy Roko

7. “I may look ‘fine’ to you, but the pain I’m in is not fine. So please don’t tell me I don’t look sick.” — Alicia McInnis

8. “It’s hard to leave the house because of the fear one might happen while you’re away from your safe place.” — Chanel DeSimone

It's hard to leave the house because of the fear one might happen while you're away from your safe place.

9. “For the sake of others, you usually pretend you feel much better than you actually do.” — Shelly Boeve

10. “It’s different for everyone. So the ones your sister’s cousin’s uncle’s ex-fiancé had are not the same as mine.” — Kim Robinson

It's different for everyone. So the ones your sister's cousin's uncle's ex-fiancé had are not the same as mine.

11. “The sounds of clinking dishes, pots and pans or a squeaky door can be excruciating, even one floor away.” — Sarah Connell

12. “Smells can be painful.” — Susan Rood

13. “If you wear perfume or aftershave near me when I have a migraine, I might have to kill you. Except I’ll be in so much pain that I won’t be able to.” — Regina Maclean

14. “I would not wish it on my worst enemy.” — Amy Hollebeek Wigger

I would not wish it on my worst enemy.

15. “I’m not faking. It bothers me when I have to cancel plans, but I would never do it unless I absolutely had to.” — Shen Mager

16. “Pain meds do not get rid of a migraine. They may ease off the pain for a bit and give me room to breathe and function, but I’m always in pain. And yes, I’ve tried all the folk stuff your great grandma with migraines tried. I’ve also been to some of the top doctors in my state. I would give up years of my life to be pain free for just a little while.” — Carla Estevez

i would give up years of my life to be pain free for just a little while

17. “When I have migraines, I can see them. It’s like a firework display in my peripheral vision.” — Sherry Morrow- McDaniel

18. “The inability to concentrate is horrible, and it takes so much effort just to focus on one simple task daily.” — Michaela Shelley

19. “They stop me in my tracks, and I hate missing out on my life.” — Brooke Akam

i hate missing out on life

20. “The difference between a headache and a migraine is like comparing labor pains to an upset stomach.” — Jenny Macqueen

21. “Everyone experiences migraines differently. Some get aura, and others don’t. Some need to be flat on their backs, and others can’t lie down. Some need silence and darkness while others aren’t affected by these things too much. Migraines can change and evolve over time and with age and with life events such as pregnancy.” — Heather Ingraham Denman

22. “It’s not an easy thing to live with.” — Rebecca Marcario

it's not an easy thing to live with

23. “I’m not an antisocial hermit by choice. It’s a necessity.” — Valma Ashpaugh

24. “It’s not just pain. It’s a complete physical, mental and emotional assault on your body.” — Jamie Wingo

it's not just pain. it's a complete physical, mental and emotional assault on your body.

25. “It’s like a grip on the back of your head.” — Anita Soto Russell

26. “Yes, I do have to cancel my appointments. I’m not willing to endanger myself and my children to drive while blind.” — Jessica McManus

27. “It feels like your head is about to split open and some alien is going to pop out.” — Erika Jean

it feels like your head is about to split open and some alien is going to pop out

28. “It’s real.” — Carole Anne Trisler

29. “Even light and air hurt. My skin feels like somebody sand-papered it. It’s not something one can snap out of.” — Theresa Belcourt

30. “My migraines are not meant to punish my family. I hate the time migraines take from them.” — Kristen Schlagel

my migraines are not meant to punish my family. i hate the time migraines take from them.

31. “There is no such thing as a quick fix for a migraine.” — Amanda Dillon

32. “They can knock you in the dirt. Your whole body aches, and it feels like your head will explode. All you can do is go into a dark room, lie down and pray for it to stop. You can’t eat or sleep, and this can last for days. This is not a joke. I hate having them; it makes you feel worthless because you can’t do anything to stop them.” — Linda Eakins

all you can do is go into a dark room, lie down and pray for it to stop

33. “Just because I’m used to it — it being constant pain — doesn’t mean it hurts any less. Just because most days I can live with it doesn’t mean there aren’t days I can’t.” — Miranda Ronghi

34. “Please stop telling us to ‘just drink water.’” — Savannah Orth

please stop telling us to just drink water

34 Truths People Who Get Migraines Wish Others Understood
34 Truths People Who Get Migraines Wish Others Understood
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34 Truths People Who Get Migraines Wish Others Understood

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There are 36 million people in the United States who live with migraines, according to the American Migraine Foundation. A migraine is an inherited neurological disorder characterized by hyper-excitable brain networks that result in attacks. These networks can be triggered by a variety of stimuli including alcohol, light and smells, or they can become spontaneously active. Long story short, a migraine is not as simple as it may appear to be to others.

skeleton showing a brain and holding its head

To better understand it all, The Mighty asked our readers who live with migraines what they wished people could grasp about this debilitating and often invisible condition.

This is what they had to say:

1.It’s not just a headache.” — Stephanie Richards

2. “Chronic migraines are on a totally different level than the occasional migraine. You end up living in fear of when the next one will hit.” — Joey Caylor Spencer

3. “It’s not something I can control, and it’s not my fault.” — Sara Byk

4. “Some of us get warning signs that a migraine is coming. I get signs up to a full day before the pain starts. The anticipation of the pain and resulting anxiety sets me on edge. When I know it’s coming, I get desperate for anything that will stop it.” — Melissa Goodman

5. “Excedrin Migraine is a complete waste of time if you have an actual migraine. And yes, three days later, I’m still on the same migraine. And no, I can’t just ‘tough it out.’” — Jen Briggs

6. “One can look functional while in a lot of pain. Not all migraines develop into the hang-over-the-bowl, turn-out-the-lights, don’t-speak-to-me-for-four-days kind. We take care of our kids, go to work (mostly) and even drive carpool to school while quite ill.” — Nancy Roko

7. “I may look ‘fine’ to you, but the pain I’m in is not fine. So please don’t tell me I don’t look sick.” — Alicia McInnis

8. “It’s hard to leave the house because of the fear one might happen while you’re away from your safe place.” — Chanel DeSimone

9. “For the sake of others, you usually pretend you feel much better than you actually do.” — Shelly Boeve

10. “It’s different for everyone. So the ones your sister’s cousin’s uncle’s ex-fiancé had are not the same as mine.” — Kim Robinson

11. “The sounds of clinking dishes, pots and pans or a squeaky door can be excruciating, even one floor away.” — Sarah Connell

12.Smells can be painful.” — Susan Rood

13. “If you wear perfume or aftershave near me when I have a migraine, I might have to kill you. Except I’ll be in so much pain that I won’t be able to.” — Regina Maclean

14. “I would not wish it on my worst enemy.” — Amy Hollebeek Wigger

15.I’m not faking. It bothers me when I have to cancel plans, but I would never do it unless I absolutely had to.” — Shen Mager

16. “Pain meds do not get rid of a migraine. They may ease off the pain for a bit and give me room to breathe and function, but I’m always in pain. And yes, I’ve tried all the folk stuff your great grandma with migraines tried. I’ve also been to some of the top doctors in my state. I would give up years of my life to be pain free for just a little while.” — Carla Estevez

17. “When I have migraines, I can see them. It’s like a firework display in my peripheral vision.” — Sherry Morrow- McDaniel

18. “The inability to concentrate is horrible, and it takes so much effort just to focus on one simple task daily.” — Michaela Shelley

19. “They stop me in my tracks, and I hate missing out on my life.” — Brooke Akam

20. “The difference between a headache and a migraine is like comparing labor pains to an upset stomach.” — Jenny Macqueen

21. “Everyone experiences migraines differently. Some get aura, and others don’t. Some need to be flat on their backs, and others can’t lie down. Some need silence and darkness while others aren’t affected by these things too much. Migraines can change and evolve over time and with age and with life events such as pregnancy.” — Heather Ingraham Denman

22. “It’s not an easy thing to live with.” — Rebecca Marcario

23. “I’m not an antisocial hermit by choice. It’s a necessity.” — Valma Ashpaugh

24. “It’s not just pain. It’s a complete physical, mental and emotional assault on your body.” — Jamie Wingo

25. “It’s like a grip on the back of your head.” — Anita Soto Russell

26. “Yes, I do have to cancel my appointments. I’m not willing to endanger myself and my children to drive while blind.” — Jessica McManus

27. “It feels like your head is about to split open and some alien is going to pop out.” — Erika Jean

28. “It’s real.” — Carole Anne Trisler

29. “Even light and air hurt. My skin feels like somebody sand-papered it. It’s not something one can snap out of.” — Theresa Belcourt

30. “My migraines are not meant to punish my family. I hate the time migraines take from them.” — Kristen Schlagel

31. “There is no such thing as a quick fix for a migraine.” — Amanda Dillon

32. “They can knock you in the dirt. Your whole body aches, and it feels like your head will explode. All you can do is go into a dark room, lie down and pray for it to stop. You can’t eat or sleep, and this can last for days. This is not a joke. I hate having them; it makes you feel worthless because you can’t do anything to stop them.” — Linda Eakins

33. “Just because I’m used to it — it being constant pain — doesn’t mean it hurts any less. Just because most days I can live with it doesn’t mean there aren’t days I can’t.” — Miranda Ronghi

34. “Please stop telling us to ‘just drink water.’” — Savannah Orth

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I’ll Never Feel Guilty About Giving My Son With Autism This Treatment

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When my son was born, there were two very different nurses who worked at the hospital. The day nurse was harsh and not at all maternal. The night nurse was super sweet and much more merciful.

I was a brand new mom who had no idea what I was doing. I was panicked they’d even leave me alone with my child. Didn’t they know I wasn’t prepared for this? What if I needed help? What if something went wrong?

What if I wasn’t able to pull off this momma thing?

When the first nurse came in for the third time that day and saw my son was again in my arms, she scolded me. She said that if I didn’t put him down, I’d spoil him.

Her comment terrified me. Was I already spoiling him? Was I already failing as a mother? 

When the shifts changed, I confided my fears to the night nurse, not sure who else to turn to.

She came over, sat down on the bed next to me, stroked my son’s precious little head and said, “You can never, ever spoil them with love. There’s no such thing as too much love.”

These words changed my life.

When my son was 2 years old, screaming every single time I dressed him in socks or put him in the car seat, I was sure I was failing as a parent. I read every toddler training book on the planet. I asked other mommas, hoping they might have an answer. They didn’t. And worse, they also didn’t understand: “Oh, our little Clay sleeps all night long in his own bed.” I’ve never had that problem with Avery.”

Of course I got tons of advice, but most of it implied I was somehow spoiling him. That I was the one encouraging him to continue the difficult behaviors.

I felt terrible. Ashamed. Worthless as a mom.

And then, every once in a while, I remembered the nurse’s words:

“You can never, ever spoil them with love. There’s no such thing as too much love.”

Her words never failed to comfort me, reminding me I wasn’t totally ruining my child. They made me realize part of loving him was helping him through whatever was going on, no matter what other people said.

My son was diagnosed with autism in the midst of the worst meltdowns of his life. Every single day, sometimes three or four times a day, waves of total frustration and pain washed over my son. Rooms were demolished, walls full of holes, windows broken, electronics bashed in. He was bruised. I was bleeding. We both were crying. There was nothing I could do to stop it.

And it wouldn’t stop.

I was beside myself with worry, shame and fear, sure somehow I had caused this. Terrified that he would go to jail one day for vandalism, or worse, hurting someone in a moment of lost control.

It took months to find someone who understood. It took months to find someone that said, “This happens. He is overloaded and his brain is just shutting down. We can figure this out.”

When our occupational therapist said it, I was so relieved I sobbed.

Later she sent me an email. She said she’d been thinking about my son and me all day and wanted me to know I was doing a good job. She said she couldn’t imagine how difficult it must be. She ended her sweet, gracious note with this:

“You are loving him well. I cannot tell you how much I think that matters.”

All too often, I think we’re encouraged to focus on all the things we should be doing to help our children: the therapies, the diets, the doctors visits, the medicines, the schooling options, the life skills they need to master, the social skills they lack.

And we do. We need those things.

But it has been my experience that those things never, ever come first.

That what matters most, even in all those appointments and next steps and milestones, is the love you already feel for your child.

Please never feel bad about that. You’re a mother. You’re designed to love your children in a way that defies all logic. You can second-guess yourself when you give in and take him to the pet store. You can second-guess your decision when you discontinue one therapy to pursue another. You can second-guess whether leaving him at school today was the best decision.

But please, never second-guess love. Never question the love you have for your child.

Because there’s no such thing as spoiling a child with too much love.

Because love is always the best treatment plan.

Because love looks past duty and bears all things, believes all things, hopes all things and endures all things.

We are mommas.

We love.

And it matters.

A version of this post originally appeared on Not the Former Things

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

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What the 'Looky-Loo Stink Facers' In the Grocery Store Are Missing About My Son

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There we were, walking trough our local grocery store, picking up our usual household necessities. Well, I was walking — my boy was riding in the cart. The trip was going fairly smoothly, and a then a lady asked, “Is he deaf?”

I wonder what clued her in that my boy was “different.” Could it have been that he’s 7 years old, weighs 90 pounds, and is still riding in the grocery cart? Or maybe it’s that he was squealing at a level that made the wine bottles shake? Perhaps it was all that finger-flicking and hand flapping that gave it away. (Just between you and I, I think she may be the next big mystery solver! Scoot over Sherlock, this lady’s gunning for your job!).

My response was, “No, he’s autistic.” She just smiled, nodded her head, and walked away. A few years ago, a comment like that one, would have either offended me or sent me to the car in tears because it meant that people could obviously tell that something was “wrong” with my boy.

Now, a question like that doesn’t really bother me. I just look at it as natural curiosity. I’ll take a genuine curious question any day over a judgmental, ignorant comment, or worse, the “stink-face stare.” You know, the look people give without having to say a word? The “That kid needs a spanking,” or  “Kids nowadays, no discipline I tell Ya” look.

Those are the worst. Well, there was none of that, until checkout time. Now normally, this is when we’re almost home free.

Not today.

When my boy is good, he gets to pick out one thing. Today, that one thing was fruit flavored Tic-Tacs. “Deal!” I said. They’re cheap, low-cal, and best of all, don’t make any friggin noise. Everyone’s a winner!

And then — He dropped one. One. As in the singular. One friggin’ Tic-Tac (Insert dramatic screeching car crash sound here. Throw in a bomb exploding while you’re at it.).

He immediately started freaking out.

I looked as quickly as I could to try and find that Tic-Tac, and no luck. And to all the “perfect” little mommies that are reading this wondering “Gasp! Was she going to actually let him eat that tic-tac?” To avoid a code red meltdown? Damn right I would.

Autism parents are always in survival mode. And in the case of a very quickly progressing meltdown, we will do just about anything we can to avoid it escalating to a full on code red. Even if that means letting him eat a dirty Tic-Tac. Or at least this Autism mom would.

Any of you that disagree with this, can feel free to call me at 1-800-You-Do-You, and If that number doesn’t work, try 1-800-Ima-Do-Me!

The lone Tic-Tac was never found. My boy went into a full on meltdown.

He screamed and flailed his arms about from the time we paid to the time we walked through the front of the store, out through the doors, into the car and the rest of the way home.

mother and her son

All while, yes, the “looky-loo stink eyes” were being given. Sigh.

By the time we got home, he had managed to calm himself down. I was an exhausted wreck that now had an eye-twitch (Just kidding).

You know, I wish I could tell any “newbies” (newly diagnosed parents of ASD children) that it gets easier, but the truth is, it doesn’t. As time progresses, you just learn to deal with things better. You’ll learn to bounce back quicker from the rough spots. You’ll learn that everyday will bring it’s own new challenges. You’ll learn what works best for you, what works best for your child, and that all you can do is the best you can do.

And most importantly, you’ll learn that none of us have it all figured out. To put it simply, Autism is O.T.J.T (on-the-job-training)!

You’ll learn that most people really are genuinely curious and just don’t know what or how to ask about your child. And as for the others, the “looky-loo, stink-facers?” You know what, they saw one moment, one struggle, one meltdown, one glimpse into a life they know nothing about.

They don’t see the amount of work, effort and love that get’s poured into your kid.

They didn’t see the first time he finally looked at you when you said his name.

They didn’t see what a big deal it was the first time he held a spoon correctly even though he’s 7 years old.

They didn’t see the first time he initiated “play” with a friend.

They didn’t see the first time he said, “I love you” using his iPad.

But you know what? They don’t deserve to! Those special moments are magical. They may have seen a brief moment of the madness, but they do not deserve to see the magic.

The magic, well that’s reserved for you, and at the end of the day, the magic is worth the madness.

unnamed-1

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

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3 Ways My Nonverbal Big Brother Teaches Me to Communicate Better

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Big brothers have a lot to teach their little sisters. For me, my older sibling is constantly teaching me how to communicate better. Without the ability to speak a single word, he’s able to communicate with 100 percent more proficiency than the general population.

Joe was born seven and a half weeks premature with Down syndrome. Early on, he was diagnosed with a motor speech disorder called apraxia of speech. While the cause is mainly unknown, it essentially inhibits the muscles of his mouth from forming the words he wants to say.

In addition to a symbol-supported communication application, Joe uses a combination of sign language, body language and guttural tones to convey his thoughts. Unable to speak, read or write, Joe has faced challenges every day for the past 28 years.

But through those challenges, Joe has taught me more about interpersonal communication than any celebrated professional consultant ever could. There are three key tenants Joe instilled in me:

1. Speak the truth. Joe demonstrates how he feels with no fear of repercussion. Without the use of words, Joe’s tone, facial expression and body language are all he has. There are no words or semantics that he can use to sugarcoat things. For this reason, resolution is achieved much faster for Joe. Collaboration becomes more fluid because there are no hidden messages to decipher. He lets you know what’s wrong, and together, you can fix it.

2. Don’t give up. Joe constantly encounters people who do not have the patience to understand him. As he speaks, they dismiss what he says with feigned comprehension. Through the years, Joe has become skilled in reading tone and body language. He can quickly identify when he is being disregarded and will select a new method of articulation. This perseverance has given him an arsenal of techniques to use with even the toughest of personality types. More importantly, by truly listening to others, Joe understands when he needs to shift from his preferred form of communication.

3. Radiate warmth. Joe has faced intolerance and prejudice more times than I would like to admit. Still, he has an innate ability to overcome it through projecting warmth and happiness. When he encounters someone who doesn’t understand, he smiles, laughs and says hi. He enters each interaction with the notion that he will be your friend at the end, regardless of how it starts. With that mentality, there is rarely an objection he can’t overcome.

Joe has watched me accomplish so many things in life: learn to drive, get a degree, date, move out and travel. Not once did he show a hint of jealousy or loss. In those moments, he celebrated my success and loved me unconditionally. Joe never blames others for what is wrong in his life or fixates on self-pity. Instead, he lifts people up and brings a smile to those around him. He doesn’t acknowledge his own disadvantages; instead, he lives every day as a new opportunity to relate more effectively to those around him.

When I think about how my brother moves through this world every day with tremendous grace and serenity, I can only hope to be half of the communicator that he is. While I often fail, I know he’ll always be there to help me try again in a way only a big brother can.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Great Divide Within the Autism Community

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My daughter was diagnosed in August, right before she turned 2 years old. I did everything on the pamphlet that the neurologist gave me when he said, “Your daughter has autism spectrum disorder.”

I told my family she was already receiving Early Intervention, but we were now going to be getting much more, including intensive in-home therapies every day. I was praised and commended for being her advocate and getting her diagnosed early.

The pamphlet mentioned finding a support group; I looked and found none. I turned to the internet to find moms and dads like me. I knew I wasn’t the only one needing to talk it out and talk with people who get it, people who are living it, just like my family.

What I didn’t know was that there’s a great divide in the autism community. I didn’t realize that not only would I advocate for my daughter, but Id also have to explain how and why I advocate for her the way I do.

I see this great divide every day. I try to steer clear of it because I have a job to do. I am a mom, caretaker, wife, advocate, and a person living with autism. No, I don’t have autism… but my daughter does. I change her, not knowing how long she will be in diapers. I keep her safe by bolting furniture and keeping all doors and windows locked. My kitchen chairs have been on top of my kitchen table for almost a year. I take her to every appointment, and there are many. I sit down on the floor every day during her therapies so I can take it all in and learn it so I can teach her when her therapists aren’t here. Her needs come before mine and I gladly make it that way. I have a job to do!

I am an autism mom. Autism came in to our house when Zoey was 14 months old, and it didn’t just change Zoey’s life, it changed all of us. I’ve become her voice, caretaker, teacher and advocate. I’m living it with her, her sister is living it with her and her daddy is living it with her. It affects us all. We’re her support system.

So it baffles me when I see heated discussions in the autism community:

“You can’t call yourself an autism mom.”

“You don’t get it because your child is high-functioning”

“You don’t get it because your child isn’t severe”

“Don’t call me an Aspie.”

“I refer to myself as an Aspie.”

“No labels.”

“Accept it, he or she is autistic.”

I’ve watched the fighting and I’ve seen people get mean and nasty. It’s sad.

A child with autism has a different journey and path than that of an adult with autism. Each person with autism is on his or her own unique and beautiful path. Who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself?

Don’t we all want the same thing in the end?

Awareness. Acceptance. Love.

We need to accept that “if you’ve met one person with autism, you’ve met one person with autism.”

We need to accept each path and journey will be different, and the great divide isn’t helping. Everyone has their own story and how they choose to tell it. If we as a community can not accept one another, how can we ask the same from others?

Follow this journey on Melissa’s Facebook page.

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