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.

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 ❤

Etsy Shop Listings! 

Hey all! Happy Tuesday! 

Taking my own advice and trying to tackle my Tuesday by getting out there and promoting my Etsy shop.


I take the visual posts I doodle that I post here and on my Instagram (@theheadacheheroine) and bring them to life in 3-D and then sell them on my etsy shop. 

They are pieces to inspire, motivate, remind you of daily love, and are made to encourage.

Check out my etsy shop here!! 😊

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 🙂

My Trial And Error Life: Trying Treatment After Treatment 

An experiment.

A never-ending process of trial and error.

A frustrating, tiresome and continuous cycle.

 

The above is how I describe my health journey, and sometimes how I describe my life in general, because my headaches have become my whole life over the past couple of years. My health journey and life journey have merged into one, really.

 

When people ask me if I’ve tried a specific medicine or not for my chronic daily headaches and migraines, it truly takes a lot of effort for me to not chuckle out loud in response. Not because what I think they’re asking is ridiculous. In fact, I appreciate others trying to help me find a solution. I  just can’t help but chuckle because all I want to say, and sometimes I actually do say outloud is, “Trust me I’ve tried them all.”  OTC’s, anti-seizures, antidepressants, blood pressure medicines, beta blockers, the whole shebang. I’ve been around the block when it comes to poppin prescriptions. (it’s not as rowdy as it sounds, I promise.) Pills were all my doctors could think of to push to me. “Oh topamax didn’t work? Try Nortriptyline.”

 

But, about six months ago, I got to the point where I couldn’t put my body through anymore torture. I couldn’t try another pill. But a doctor I’m seeing told me to give a new medicine a try. You see, even when pill after pill doesn’t seem to do anything for your pain, you start to get discouraged. Heavily discourage. But with the daily head pain I endure, my body and my mental strength can’t afford to be discouraged. No matter how pessimistic I may feel about a pill potentially me, I usually always give it a go, just in case this time it miraculously works.

 

Well, as luck would have it, the last pill (from the above scenario describe) I tried did not work and in fact gave me adverse reactions that my doctor had never witnessed before. Being told
“Oh really? That’s very interesting. I’ve never heard of any patients reporting those side effects before” isn’t really the uplifting news you hope to hear going into your appointments. I wanted to say “Oh really? No one else ever felt like their migraines tripled in intensity? No one else ever felt so dizzy that they thought maybe they accidentally somehow got drunk at work in the middle of the day? No one else reported feeling like I was a zombie, not being able to focus on anything at all? Well isn’t that dandy that I could be the first person to experience all of those things.” But I didn’t say those things, of course. Mostly because I respect and like my doctors too much and because I know it’s not fair of me to say such things.

 

Instead, I sulked. I hit a low. I pretty much told myself that there was no helping the pain I feel from when I wake to when I shut my eyes again at night. I told myself that I would just have to keep on truckin’ with no hope for any relief in the foreseeable future.

 

But then, the next time around,my doctor started suggesting some new treatment ideas that in fact were not revolved around me swallowing about four pills a day. These new treatments include: Physical therapy, atlas orthogonal, botox, etc.

 

As always, I was and still am skeptical about the proposed treatments and try not to set my hopes too high on the idea of the treatments helping me feel better.

 

It’s gravely exhausting on the body and the mind to spend years of your life trying medicine after medicine, treatment after treatment, and never seeing enough progress to turn my frown upside down. Thinking about how much I’ve put my body through physically, by trying every chemical under the sun just to get the pounding in my head to subside, is sickening. To try treatment after treatment, just to get nowhere is a process that I’ll never get used to, but probably also will never be able get rid of.

 

A smart person once said: “Insanity is doing the same thing over and over again and expecting different results.”

 

To keep my sanity, I have to try every new thing that my doctors and I can think of, because it’s not healthy to continue doing the same thing repetitively if it’s not producing any new and different results.

 

The irony, however, comes into play when the reality hits that actually, doing new and different things over and over again and never seeing different results is actually what causes the sanity to slip away from you.

 

But that’s when you have to force your fortitude, perseverance, strength and dreams of one day feeling better to overcome all of the discouragement and feelings of creeping insanity that you may be feeling.

 

I must keep trying new methods. I have to give new treatments a chance.
People throughout history have found amazing things through the process of trial and error, why does it have to be any different for me?

 

(Read my post on The Mighty Site here)

 

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.


 

 

Monday Mantra: It’s Ok To Say No

It’s hard to do, but it’s definitely possible. Being a people pleaser is a great thing and a terrible thing, because it can be hard to do what is truly right for yourself. But guess what? You’re still an awesome person even if you say no every once in a while. 
Living with a chronic illness, I have to say no to a lot of things. It’s not a great feeling. So when I can, I usually say yes to all of the things I can say yes to. This could include plans, favors, etc. 

Sometimes I find myself saying yes even when I know I shouldn’t. Like when I say yes to going out even though my head is begging me to stay in. I hate disappointing my friends.

But we need to be able to listen to our bodies and not feel guilty when we have to say no. Do what you need to do for yourself to feel happy and healthy. 

Monday Mantra: Adopt The Pace of Nature

Some views and experiences change our outlooks on things. Being in the presence of pure, natural beauty is humbling and I always take a minute to myself, even in a crowd, to soak it up, close my eyes and just be still. 

Niagara was one of those places that changed my outlook on how I move through this life and through my health journey. I spend a lot of time rushing through things and then getting bad anxiety and frustration when things happen late or don’t go as planned. This goes for my personal life and my life with chronic illness.

I aim to live a more patient life where I can react in a calm manner to things that go not originally as planned. Instead of rushing to a conclusion without consulting a doctor, instead I will try to sort out symptoms and have a conversation about possibilities. Instead of worrying and growing anxious when my headaches continue to thrive, I will try to calmly take a set back to look at everything I’m trying and doing and then talk to my doctor about my next steps.

These types of goals I will try to transfer over to my life in other areas as well: work, relationship, family, etc. 

Adopt the pace of nature: her secret is patience.

-Ralph Waldo Emerson

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.