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.💛

Napping In Public & Not Letting Pain Cancel My Plans

This weekend I made a quick weekend trip away with my little brother to Duke University! He wanted to visit the campus & my Virginia Tech Hokies we’re playing them in a football game that weekend, so it was a win-win.

We enjoyed walking around the campus (I’ll admit, it was beautiful.) The weather was great, sunny & breezy & not too too hot.

But as luck would have it, I ended up with a bad headache about an hour or so before the game was supposed to start. I wasn’t surprised by the pain, because we had been walking around for hours in the sun (and the campus isn’t flat, so there were lots of going up & down hills/stairs.)

Walking up stairs, exhausted, out of shape

My exertion headaches have always been ruthless & I haven’t been able to find any treatment that has helped them. So I always just have to suck up the pain if I want to participate in certain outdoor activities.

Because my brother is so patient & always supportive, he was ok with us sitting down and relaxing in the student center for about an hour before the game. We managed to find a place where I could nap for a short bit, because I knew at that point, only sleep would help decrease the pain I was feeling. So that’s what I did, I shamelessly napped in the Duke University Student Center. But honestly, it helped! I felt a lot better when we got to the game and I was able to enjoy the experience with my brother & create those memories with him. I didn’t want to let my pain stop me from being able to do that.

Moral of the story: Listen to your body & do what you need to do to lessen your pain. Getting awkward stares while you nap in public is worth feeling good enough to enjoy whatever event/evening/etc that you had planned! And don’t be afraid to ask the people you’re with to adapt their plans to help you feel better, because trust me, they want you to feel better too!

Shout out to my brother who encouraged the public napping & who is always willing to adapt plans to make sure I’m feeling ok💛

Duke university

“You’re so plucky, I love it!”


A few weeks ago someone said to me, “You’re so plucky, I love it!” And I had to google what the word meant since I didn’t know 🙈
That being said… ☝🏼it’s one of my new favorite words and after learning the meaning, I took what she said as such a compliment. It’s a word I’m sure many people who deal with chronic/invisible illnesses would be proud to be described as.

2017 Migraine World Summit–The Event of the Year!

Last year, I was so fortunate to receive an email making me aware of an online event called the Migraine World Summit. I didn’t know what it entailed and I wasn’t sure what to expect, all I knew was that world known doctors would be interviewed about migraines, headaches and everything that comes along with them. So I immediately signed up to participate!

There was so much information being talked about–and there was a week of interviews that were available for me to watch! Best part? I was able to participate and watch straight from my bed. Score.

This year, ‘m volunteering for this international event that is going to bring thousands and thousands of participants. I can’t wait to hear what the people interviewing have to say! BTW, some of the people being interviewed include leading experts and doctors from the National Headache Foundation and the American Migraine Association. Sooooo yeah, that’s pretty awesome.

The event begins next week, April 23rd!! Make sure to check out the website here: https://www.migraineworldsummit.com/ and register for the event! I promise you will learn very valuable information and perspective on the migraines and headaches that you’ve been battling day in and day out.

“How To Live Well With Chronic Pain And Illness” Chapter 2: A Not-T0-Do List for the Chronically Ill

I am a huge list makers. If you looked on my phone right now, you’d probably be overwhelmed and confused by the number of lists I have saved. Some of which are extremely random and I don’t remember making.

Living with a chronic illness, I have a mental to-do list running at all times to help me steer clear of increasing the severity of my pain. But this whole chapter in “How to Live Well With Chronic Pain and Illness” is about making a not-to-do list. Here are a few:

  • Do not spend your energy worrying about how others view your medical condition
    • this is one I struggle with constantly. I am always worrying about if people think I’m faking it, or exaggerating my pain. I worry if they think I’m just lazy because I turn down opportunities to go hiking, when really, it would make my head near explode. I worry that people will think I’m no fun because often I have to turn down happy hour invitations because alcohol causes my head to scream. I also always worry that when people see me dancing around and laughing, that they will think I’m “better” and that I don’t have a headache. When in reality, I always have a headache, I just often put my personal enjoyment ahead of them and often put up a front that I’m ok. Just like any other thing in life, we cannot put our focus on how others view us or think of us. What matters is what we know to be true and how we see ourselves.
  • “Do not treat disheartening or discouraging thoughts or emotions as permanent fixtures in your mind”
    • so often I hit dark days when I worry about my life in the future and that I will be feeling sick every day for the rest of my life.These days often entail gloominess and the blues. It’s normal to have these types of discouraging thoughts, especially on days when our pain is at its worst. Do not condemn yourself for these thoughts. These thoughts are not permanent. The blues shall pass and the light will shine through again.
  • “Do not ignore your body’s pleas to say no to an activity”
    • It’s extremely hard to turn down offers to activities that we know will make us feel like the healthier people around us. I remember countless times where I have accepted offers and pushed my body just because I didn’t want FOMO. But, each time without fail, my body ended up paying for it later on. In the moment, it’s easy to forget about the pain. Sometimes, I even forget that my headaches are there due to my excitement or adrenaline. But once I stop moving, trust me, they remind me that they’re still there. The pounding in my head is usually so bad I almost (and likely do) cry. Don’t push your body past its limits. Sometimes on special occasions, if we feel comfortable knowing we will most likely pay for it later, it’s ok to say yes when we know we shouldn’t. But overall, it’s important to stay mindful to what your body is telling you.
  • “Do not put your pre-illness life on a pedestal”
    • this one stuck out to me the most. Almost every day I think to myself “I just wish I could feel like I did x  years ago when my headaches were not a constant.” I daydream about the days where I was exercising daily, partying like a normal young adult sometimes does, and just living life without worrying about setting a reminder for my 3 doctor appointments for the next week. But the thing is, life is always changing. What once brought us joy may not bring us the same kind of joy any longer. Take a look at where you are now, what you’ve accomplished and who you have around you. Ask yourself, did you have these things in your pre-illness life? Most likely, you got to where you are today because of what you went through in the past. And I bet all of you have some really great accomplishments to be proud of and a lot of people who are there for you day in and day out. Put that life on a pedestal.

If you’re like me, than you are your own biggest critic. People like us have a tendency to be hard on ourselves and have a very tough time letting things from the past go.

3633501291_d71bb624a5_z

 

Let’s make a promise to ourselves to focus on the good that we have in our lives now, instead of fretting over what we’ve lost from the past.

 

 

HAWMC Day 10: Yahoo Has All The Answers

Yahoo Answers

Q: My head feels like it’s about to explode. The throbbing is so intense. Can someone’s head actually explode?

A: No. Your head cannot physically explode. It will feel like it at times–the throbbing feels intense enough that it feels like something will erupt from within your skull–but no, your head will not explode. It will be over soon.

ryan-gosling-headache-meme

 

There’s A Purpose Behind Your Struggle: Seeing Your Words Inspire Others

Recently, I was nominated for three WEGO Health Activist Awards. WEGO is an online network of community members who are influential in health knowledge. WEGO Health Activist Awards celebrate those community members who share their stories, knowledge and strength to help inspire and help others who are on their own health journey. It’s an incredibly humbling honor to have been nominated for these awards.

wego-health

Being nominated means that someone out there read my words, my story, and what I had to share, and was positively impacted by those words and my story. That feeling alone is such a powerful one. It gave me a surge of strength to continue to advocate and inspire in any way that I can.

For so long, I let the struggles of my health problems and my constant battle against my headaches continue to knock me down, and keep me down. I harbored so many negative thoughts on a daily basis.I saw no reason to continue to search for treatments that worked. I didn’t see the point in trying to find answers, because for so long I was lead down dead end roads.

It wasn’t until I was given the idea and the loving push to start this blog that I started to see all of the positive things that have resulted from my battle with chronic daily headaches. As I started to see that writing this blog was helping me cope, I thought that maybe I could help others cope as well–no matter what fight they’re fighting. I wanted to reach people who had reached the point that I had–the point of giving up. Chronic illness can take over our lives if we let it, but we have the power to live our lives the way that we deserve to, without letting chronic illness take us as victims. That’s what I set out to show people like me.

So when I saw that I was nominated for the WEGO Health Activist Awards, I cried. (*spoiler alert: this isn’t overly shocking since I cry at everything including cute puppy videos.*) I felt fulfillment. I felt inspired by the people who I had inspired. I felt strengthened by the people that I somehow strengthened. To know that I had reached at least one other person who is coping with a battle of their own, opened my eyes to the realization that my passion is for health advocacy.

It’s an heart-warming feeling to know that my journey has resided with other people. Your words can help someone else in so many ways you may not have even imagined. Keep sharing your story. Keep spreading your love. Keep inspiring and strengthening the people around you. We all need to be lifted up every once in a while.

 

Knock Down Those Walls

 

It’s a heavy, unsettling feeling when I think back on all of the instances I’ve shut myself in my room or found a place where I could be alone without worry just so I could sit alone with my anxious, bitter, and angry thoughts. It’s been years since my life with a constant pounding head has began and I fear it’ll be years before I ever see that change.

 

I go through spells, you see. I’ll be doing really well mentally–even if I’m not doing so physically. I’ll put on my front for people that I care about and turn my mind to other things so that I can enjoy life, like I’m supposed to. Sometimes, I even feel OK. But then, as if it’s a routine I’ve made for myself, I hit my spells where I feel it’s best to pretend to be hermit-like. I use the word pretend to make myself feel better.

 

The same people who make my life brighter and with whom I enjoy my best moments with, are the same people I tend to push away or block off when I’m at my darkest. It’s a terrible habit I don’t recommend picking up, but that I know I’m not alone in possessing.

 

I retreat into my lonely “why me” world. I have no desire to see anyone or get out of bed, really. It’s a sinking feeling that I’m not sure quite how to describe in words. The people who care about me tell me to let them in, to open up and talk to them. They tell me they hate that I feel like I have to seclude myself and not speak about how I’m feeling or what I’m enduring. They say they can’t imagine how hard it must be to fight this daily battle and feel the headaches I feel every single day.

 

The thing is, I would love nothing more than to want to open up and talk in those moments. For everyone who has someone in their lives who is battling some kind of fight and acts like I have described myself above, please know, it’s not a choice we make. We don’t like putting up walls, it’s just in our nature.

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.”

― Socrates quotes

 

 

I hate that I block people off and push people away in these moments. It’s a double edged sword for me. I don’t feel like talking about my pain, but I also don’t want my support group to feel like I don’t want to talk to them. There’s no winning really in this back and forth game.
All I can say to the people who I’ve kept out with by putting up these walls is, please never stop trying to knock down those walls. Even when I push you away with all I’ve got, even when I seem like I’ve lost the ability to speak, even when I come across like all I want is to be left alone–please never forget that it’s just in my nature to go through these spells and that the last thing I want for you to feel, is unwanted.

Thursday Tips & Tricks: Theracane 

This is the Theracane.

I bought it at the PT office I was going to for therapy appointments for my head/neck. Basically, this theracane mimics the massage techniques done by the physical therapists in order to restore muscle function; relieve tension, stiffness soreness, etc; and basically just help your body feel better!

For headaches: I use it on my neck, upper back and the spot right where the back of my head meets my neck. I apply pressure and try to relieve tension in those areas, because that kind of tension can worsen headaches and even cause headaches for some.
I’d definitely recommend buying one, especially because you can use it on so many areas of your body! 

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 🙂