Hope For Progress, Rather Than Fear The Disappointment 

I have gone through months where I’ve effectively given up, only to give myself a wide wake up call that I needed to pick myself out of my funk and continue to try to find an effective treatment. No matter how walls I ran into and how many failed attempts there were, I had to keep trying.
I hope that you keep fighting to find an effective treatment. Or if you’re in a funk and you’ve lost hope, that you find the strength to try again. Because hope is the only thing stronger than fear. Hope that there is a treatment out there, rather than the fear of never finding an answer.

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.

Monday Mantra: Look For The Rainbows 🌈

It’s easy to get caught up in all of the setbacks we face in our life–I myself am guilty of doing this all the time. Instead, let’s look for rainbows when we see rain, and stars when it’s dark out. 
When we’re feeling crappy or reverting with our symptoms, it’s the natural response to get sad, frustrated and lose hope. Let’s, instead  try to put our energy toward searching for the positives that could possibly arise from another speed bump in our journeys. It will help keep you hopeful and strong when your body is telling you to be anything but that. 

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 🙂

Tuesday Tunes: “Second Wind” by Maren Morris

 

Maren Morris has quickly become one of my new favorite country artists on the scene right now. Her songs are not only catchy but the lyrics I think are genius. She has some songs that have honestly made me laugh because she somehow manages to be funny and scarily relatable all while singing beautifully.

This song though, is more of an empowering song. It’s about how you learn to let people fuel your fire, rather than letting them get in your head and tear you down.

No matter what your goal is, never let anyone tell you that you can’t achieve it. Don’t let the negativity of others seep into your confidence, perseverance and determination. People will do what they want to do, and say what they want to say. Let them.It’ll just motivate you more to succeed and make them mad that they underestimated you in the first place.

 

The Lotus Flower

It wasn’t planted in a bed of full soil among other lucky seeds. It wasn’t given what others were blessed with. It was born an underdog.

I was not built to live in a fully healthy body like so many others around me. I was handed cards that others have been blessed not to have received. I was born an underdog.

It grows within muddied waters and it has to push its way out to get some light in its life.

I continue to grow despite each new obstacle that life throws my way. I push my body to whatever helps it feel healthier.

It reaches the light, blossoms and thrives despite its unfavorable beginnings. It is a Cinderella story.

I push myself further and harder each day so that I, too, can blossom. So that I may reach my sun and come out on top, despite the unfavorable circumstances I’ve been given. Despite the never ending headaches and the on-going speed bumps in my journey to find treatments that help. Despite the wear and tear that my heart, mind and body have undergrone throughout it all.

I will become the Cinderella story.


 

 

Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.

Thursday’s Tips & Tricks: Consider Physical Therapy

Thursdays Tips & Tricks 😍⚙ think about giving physical therapy a try! 

I started physical therapy a couple of months ago (I think? My sense of time is awful 🙈). My PA wrote me a prescription for it, to have the PT work on my neck, posture and whatever they could think of to help my daily headaches. 

I can’t say that it has solved my problem (because if that were the case there would be some newly very wealthy people), but it has definitely helped decrease the intensity of my every day headaches 😁💪🏼 

I have multiple headache disorders. So what the physical therapist is treating is my diagnosis of a cervicogenic headache—again, just one of my multiple types of headaches. They work on my posture (which was so bad before) as well as getting more motion and working out tension in my occipital nerves, muscles and bones (which all impact headaches). 

Bad posture causes tension in upper back and neck muscles. That along with having occipital nerve and muscles out of whack, can definitely make headaches worse.

It was a gradual positive change that I noticed. And it took a lot of trial and error and experimenting with different methods on my PT specialists side. We found that some methods didn’t do anything while some (more intense looking) methods helped dramatically.

And you know that saying no pain no gain? That can be very relevant to some PT sessions. They work on your back, neck, muscles, bones and nerves. Some things aren’t going to feel pleasant. But let’s face it–it’s nothing compared to the pain I (and all chronic illness sufferers) battle every single day. 

I’ve had some headache setbacks during the time period I’ve been doing PT, but they have been related to other outside causes (because that’s how life of a spoonie works, right?) But I can safely say that my physical therapy team has tried really hard to help me feel better, even if it’s just a small change.

People with chronic illness can atest, even a tiny positive change is considered great progress! 

Therefore, I definitely recommend PT to someone who is in a rut like I was–where they aren’t or weren’t seeing any progress in their headaches. 

Give it a try, because Ryan gosling might massage you after (offer not guaranteed)