Keep Shining For Others

Recently I joined a bible study at my church as a way of growing deeper in my faith, find another community of women I could confide in and also as a new way of finding support with the many ups and downs of life.

Last week at the Bible study, one of the women at my table said something during our discussion that really stuck with me. She said “You might be a light for somebody out there without even knowing it.”

And suddenly I remembered one of the most important reasons why I write, why I have this blog, why I share posts on social media & why I try to be positive in my every day life. And that is to help someone else feel less alone than I once felt.

Be the light

Sometimes I let my fear of judgment and misperception & my fear of failure blind me from seeing and remembering the reasons why I am on this mission to be a chronic illness advocate.

A couple of years ago, I started this blog & my Instagram account as a way for me to cope with the chronic pain I was dealing with. It was way worse than it had ever been and I wasn’t dealing with it in a healthy (I know it’s ironic for me to use the word healthy here) way. So I started writing out how I was feeling both physically and mentally.

But I quickly saw that my words and experiences were reaching people. I had people commenting & messaging me talking about their chronic illness and pain. The light bulb went off and I realized how naive I had been.

Of course I wasn’t the only one dealing with this kind of pain.

While the people messaging me didn’t always have the same diagnosis as me, we all could relate to the lifestyle limitations, the frustrations & the struggles all the same.

My point here is: SHARE YOUR STORY.

By sharing my story, I have been able to connect with people who I have not only been able to help, but who have helped me just as much if not more than I have helped them.

You never know who out there you may be encouraging, inspiring & comforting.

You are somebody’s light.💛

HAWMC Day 7: Starting My Advocacy Journey

We all need people in our lives who push us to do and be greater. Sometimes it’s hard to accept advice that someone has to offer, but most of the time, it’s worth it to hear them out.

I never even thought about sharing my story about living with chronic daily headaches, because I never thought anyone would really need or want to hear and read about it. The thought never crossed my mind.

That was until one day, during a pretty dark and frustrating period of my life when I was experiencing 6+/10 head pain every single day for a long string of time. I was living with my older sister at the time, so she knew and could see that I was living in constant pain and that I was having a difficult time dealing with it. One day she suggested an idea that turned out to be my motivation behind creating The Headache Heroine. She said “Why don’t you write about all of this?” She suggested I use it as a coping mechanism, since I already had a love for writing. Why not take my love for writing and do something positive with it? She helped me realize that it could be therapeutic for me, which turned about to be very true.

At first, I was worried that sharing my story would just make me sound like I was throwing myself a pity party and was inviting people to bring gifts of sympathy. But that’s not what I was going for and that’s not the kind of vibe I wanted to throw out into the world.

What actually ended up happening, was that I got an outpouring of encouragement and praise for being “brave” for being vulnerable enough to start opening up about my health and really putting it all out there. I had been hesitant to share my blog posts on platforms like Facebook and Instagram, because I didn’t want to bug people and add things to their newsfeed that they didn’t want to look at/read. But then I realized, that if people wanted to skip over what I shared, they would, and if people wanted to read what I wrote, then they would. I eventually created a separate Instagram account for my health journey, but I still tried to tell myself not to worry about what others thought.

After a few months of being worried that people would judge or roll their eyes at the stories I was posting and sharing, I slowly grew much more comfortable with sharing my story. I realized that I was actually reaching people who really appreciated and benefited from my words. I became less concerned with those people who didn’t care about my story, and focused all my attention on the people who did care and who actually benefited from hearing my story and my advice.

While advocating and getting my voice out there actually helps me cope and feel more positive about myself and my life with chronic daily headaches, I also know that I have helped other people who are facing similar health journeys. That fact alone keeps me writing and sharing, and it should help encourage you to do the same!

I Was Supposed To Be Healthy, Instead I Have A Chronic Illness

I was supposed to spend my college years carelessly moving on excitement, dreams and adrenaline…Instead I spent my college years dancing wildly and living an excited life only when my headaches allowed me to.

I was supposed to put my money towards seeing the world, paying off debt and buying every day necessities like a vacuum…Instead I’ve seen my money be handed to doctor after doctor and burying myself in even bigger debt due to all of the medical bills I have yet to pay off.

I was supposed to be a physically active young adult with living in the years where I would see my healthiest, most fit body…Instead I can’t exercise because of my throbbing head and instead see a body filled with insecurities and unrealistic expectations.

I was supposed to be partying while I’m young, out with my friends every weekend letting loose after a hard week at work…Instead, I still work hard every week but often find myself with heavy cases of FOMO laying on my couch looking at Snapchats of my friends out on a Friday night.

I was supposed to have a world of options and opportunities at my hand…Instead, I am limited to that which I am able to do without exhausting myself and putting myself in more pain than is already present.

I was supposed to live a life where I only got headaches due to hormones, stress, exhaustion, hunger or recovering from a night of partying…Instead I have a headache just sitting here typing this out, and when I do literally anything else.

However, the funny thing about the whole “I was supposed to thing,” is that none of us know what lies ahead. Life changes direction without warning all of the time. What we may one day have thought we were supposed to do or be, may be completely different than we think we are supposed to do or be the next day.

 

Be Kind, For Everyone Is Fighting A Battle Of Their Own 

When you’re walking down the street and breeze by the people moving past you, how often do you glance up at the faces that are blurring by? How often do you take the chance to look a stranger in the eyes and really try to read their story? There’s a story behind every face you see, each one unique and different than the story walking beside them.

Stories are more often than not, unpredictable. We don’t know who the characters are until we get to know them. We don’t know when the plot twists will turn up. We can’t know in advance if or when an antagonist will make an appearance, short lived or prolonged. There’s no telling when the happy ending will wrap everything up and tuck us snugly into bed.

Every person you come across has something they’re not sharing, some battle they’re facing, some story they’re a part of that we as outsiders, have no insight on. You see, life isn’t fair. It throws us curveballs we swing and miss at, it throws us off our paths, it presents the unexpected and its hardships discriminate against no one. 

As someone with a story of your own, the human and compassionate thing to do, is to be kind to every person you meet because you have no idea what phase of their story that they’re in.

“Be kind, for everyone you meet is fighting a hard battle.”

I’m battling daily chronic headaches, narcolepsy and chronic pain that has yet to be diagnosed. There is a constant pounding within my skull that strangers I see would have zero reason to expect me to be feeling. With my chronic migraine headaches along with my other medical mysteries comes anxiety issues, emotional lows creating a hermit like version of myself, unnecessary guilt, frequent frustration and so much more that I choose to hide either behind a smile or under my covers.

Even though I surround myself with people who are loving, kind, compassionate, generous, supportive and reliable, it’s just a fact of life that I will stumble upon people every once in a while who are less than kind to me. I’m only human and can’t help but make a sour face when sour words or thoughts are tossed my way. But I always turn back and tell myself that it’s the right thing to do to give that person the benefit of the doubt. They don’t know me. They don’t know my battles, my fights and my journey. They haven’t been given the book to start reading my story.Just like I don’t know their battle and their journey. Perhaps they are facing an uphill battle and are having a bad day filled with frustrations. So even if they may not have thrown the kindness my way, it’s all I can do to throw it back their way.

We’ll never understand what someone may be going through unless they open up to us about it. I promise you though, that any and everyone you meet is facing a battle that you know nothing about. All you can do, is be kind and show them the love you know that they need to keep fighting whatever battle that they’re up against.

Vote For The Headache Heroine in the 5th Annual Health Activist Awards!

I’ve been nominated for three award categories for the 5th Annual WEGO Health Activist Awards this year! The categories I’ve been nominated for are below:

  • Best in Show: Instagram
  • Best in Show: Pinterest
  • Rookie of the Year

Please take a quick minute or two to vote for me on my nominee profile!

I truly appreciate all of the support and am very humbled and excited to even be thought of for these awards! It’s extremely touching and motivating to know that I’ve at least reached and helped one other person over the past year through The Headache Heroine.

Thank you in advance ❤

Mary vs. the MRI Machine

My Neurologist doctor is like that super fancy 5 star restaurant where people are on waiting lists for months just to get a taste of their high-class plates–He’s got a lot to offer, in super high demand, and has to be booked six months out.

Most often, I see my Physician Assistant–who is super awesome, has exponentially furthered my forward progress finding help for my headaches and I love seeing her. But, seeing the actual doctor is a different type of visit. He’s just so intelligent and has a different way of thinking, so there’s always something new that I learn and he always suggests a new path to try.

Today, I continued to explain my symptoms. I told him how my atlas orthogonal treatments (post all about that coming soon!) has helped decrease the intensity of my daily headaches, but hasn’t helped my exertion headaches. Nothing has. I still feel the intensifying pounding when I do yoga, lift, run, walk up the stairs, bend over, etc. From heavy workouts to mundane every day tasks like walking up stairs–my headaches intensify and the pounding begins immediately.

Apparently, patients who experience that same type of thing (headaches intensifying by coughing, bending over, walking up stairs, etc.) often have a blockage in their venous channel. So perhaps I am among those patients. Of course, it’s a very uncommon occurrence, but people close to me know I’ve never been one to exactly fall into the “norm” category, esp. when it comes to my health.

So what does that mean? It means I have to get another MRI–but this time an MRV. It’s an MRI that looks specifically at your veins to look for blockages. If it’s positive, there’s a treatment where they put a stent in to clear up that blockage and open up flow. If it’s negative–well, then more MRIs will be taken and more serious tests need to be addressed.

So here’s to hoping that this MRI is positive (I don’t normally wish for that, nor do many people.)

Let me ask you this: how annoyed and frustrated are you when you’re not able to exercise because you’re sick, or you have a concussion, or you pulled a muscle, etc? Probably pretty frustrated (for the most part) because you want to feel active and youthful. Well, I haven’t felt active and physically youthful in about 7 years. I’m 23 years old and simply walking up the stairs and briskly walking across the room makes my head feel like it’s about to blow. It’s extremely discouraging. All I want is to be able to do yoga, run around carelessly, start  lifting again, doing anything really. Being unable to exercise or be active makes you feel lazy, large and lame. It starts to eat at your self-confidence and self-image. I say this because before my headaches became the way they are today, I was physically active every day and loved it. I loved being active and working to stay fit. It’s not even an option for me anymore.

So knowing that a positive MRI and implanting a stent in my veins could possibly bring me my old lifestyle back makes me oddly wish for a positive MRI result.

 

Anyone else out there experience exertion headaches like me? Or in any way, shape or form?

I’d love to hear your stories, advice, etc! We’re here to support and encourage one another 🙂

My Anaphlyaxis Story

For those who may have seen my previous post, the post below is the story I wrote for the Food Allergy Resource and Education website:

I was at a restaurant and had made my allergies very well known to the waiter and the staff. However, they didn’t take my allergy seriously and made all of my food on the same station that they had made their famous fish menu item. I had an anaphylactic reaction about a minute after having a tiny bite of what I thought to be a “safe” cucumber with tzatziki sauce.

This was my first reaction since I had been diagnosed and I wasn’t sure when to use my epinephrine auto-injector and decided to wait because I thought mysymptoms were getting better. I told myself if I calmed down, breathed deep, and didn’t think about it, that I would feel better. I am so lucky and glad that I was with a close friend who drove me to the closest ER. She had actually tried to use my auto-injector on me, but didn’t know how to use it correctly. She, in the heat of the moment, forgot to remove the safety cap. And honestly, I don’t blame her. It was probably a terrifying moment for her as well. So that’s when I decided to wait out my symptoms.

I now know that when in doubt, you use your epinephrine auto-injector. I learned that you should NOT wait out your symptoms. Since then, I have taught and continue to teach all of my friends and family how to use an auto-injector. The most important thing is that you educate yourself on the symptoms and treatments, and you educate your loved ones as well.

Always carry your epinephrine. Always read labels. Never feel embarrassed or like you’re annoying someone when you ask to read a label, or you ask how they cooked something, or you ask how they cleaned their kitchen ware. Do not feel like you are burdening anyone, because it is your life and safety at hand.Know that you are not alone, also. There are always a tremendous amount of support and resources out there for you.

Food Allergy Awareness Week: My Story

I am incredibly humbled and happy to know that my story reached more than 90,000 people and shared more than 300 times thanks to Food Allergy Research & Education

I shared my story for a couple of reasons:

1. So people with food allergies learn that they need to be able to recognize their symptoms, know how & when to use their epi-pen, and to see how important it is to teach loved ones how to use an epi-pen. 

2. So that people with food allergies feel less alone. So that they don’t feel embarrassed or as if they’re a burden by asking friends, family and restaurant wait staff about cooking processes and allergens.

If at the end of the day my story has helped others in some way or another, than I feel accomplished and happy 😊
You can read my full story through the link below (I’ll also share in a separate blog post shortly 😁)

My Anaphylaxis Story on FARE.com

Tuesday Tunes: “The House That Built Me” by Miranda Lambert

A song that’s close to my heart. I listened to it a lot when I was going through one of the toughest transitions of my adolescent life. It helped me grieve, be thankful and reminisce. Sometimes we need to leave things behind. We move onto the next chapter of our lives and sometimes struggle with leaving the past chapter because of how valued it is to us.

This is a song about not going back to the past to stay there, but merely to touch it just to feel it again even for a little bit.

Thursday’s Tips and Tricks: Wave Bye Bye To All Them Haters 👋🏼

All of my Friends enthusiasts will appreciate this week’s Tips and Tricks advice:

It’s hard not to feel uncomfortable, nervous and afraid when you decide to put your story and journey out in the public for people to see. I know I was hesitant for a while when choosing to share very personal blog posts about my health journey on things like Facebook, where everyone can see and read about what I’m going through. 👀

Here’s the truth, y’all: Some people will encourage you. Some will judge you silently. Some will praise you for being brave enough to share. Some will question you and everything you’re facing. 

But no matter what ☝🏼️ just keep the mindset that those who mind don’t matter, and those who matter don’t mind. 👌🏼 If you get questions or judgment from outsiders, just pull a Joey and don’t put any thought or care into what they’re saying 🙅🏼Because you’re awesome and brave, and sharing your story matters to so many! 💛💛 do you booboo 💁🏼