#HAWMC Day 4:Wishing For A Concrete Diagnosis.

This isn’t the answer you were hoping for or expecting. Well, the lack of answer, actually. You were hoping to hear a clear cut diagnosis so that you could then begin whatever treatment was available. But it’s not that simple. It won’t be that simple. Instead words like “new daily persistent headache,” “chronic daily headache,” and “chronic migraine” will be thrown at you. They’re all very similar but very different.

It’s going to be hard to find treatments that work for you. Your life will become to feel like a science experiment. But trust me, you need to keep on going. Give different treatments a chance so you can figure out what really will not work for you and your body and you can also discover things that can help you, even if it helps just a little bit.

It’s going to be an up and down roller coaster. You won’t be able to predict or control when the curves are coming or how shaky it’s going to get. What you can do, though, is control, is how you react to those curves and shakes.

Stay strong. Stay resilient. Your mental strength will waiver, your physical strength will at times feel imaginary, but you have the highest pain tolerance of anyone I know.

Even though you won’t be getting a concrete diagnosis, just remember, that you are taking steps forward in this journey of ours.

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.

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 🙂

Chronically Grateful Day 9: What Are You Most Grateful For About Yourself?

  
Being positive about yourself is never a bad thing, so be proud of who you are! ☝🏼️Despite the past 10 yrs (or so) of dealing with these headaches, I still have a lot to be grateful for. I’m compassionate, kind and goofy 😁I’m resilient and strong💪🏼. I dance wildly in front of crowds and don’t care what people think💃🏼I smile even when it seems impossible. It may come across as boastful, but really I’m just grateful for how I’m able to stay myself throughout this crazy ride. 💖

Chronically Grateful Challenge Day 2: What Are You Most Grateful For On Your Healthcare Team?

  
I’ve seen a wide array of doctors and been to countless offices. While they all have tried to give me a diagnosis and treatment, I’ve only felt truly attended to and comfortable at a few of those offices. My neurologist and headache doctor is incredibly smart and transparent. Transparency isn’t always comforting in the healthcare world, but it’s so important and crucial to good and effective communication with your doctor. These doctors are exhausting all they can think of in order to help me. They answer my messages in a timely manner and they are able to sympathize and understand (or at least try their best to understand) my concerns, emotions, and symptoms. Patients like myself get frustrated pretty often because I have yet to find any answers, but these doctors don’t take it personally and they do what they can to help ease my frustration. I’d be nowhere without them! 

Chronically Grateful November Challenge: Day 1–What Does Gratefulness Mean To You?

I’ve been pretty active on Instagram for this blog (@theheadacheheroine) and I saw a challenge for people living with chronic pain, disorders and/or illnesses. It’s for the month of November and the first day is about what gratefulness means to you, individually.

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To me, gratefulness means having the right perspective in order to see all of the blessings I’m surrounded by. I have a roof over my head, a loving family and devoted friends. I have a job (that I’ll be starting tomorrow!! eek!) and even though my health isn’t 100%, I have access to doctors and health facilities.

I think it means that even at our worst, we are able to see the good around us and making the effort to take that positivity to build ourselves back up.

This weekend I am grateful for the fun times I was able to share with family and friends. I have been having relentlessly bad headaches all week so I was worried I wouldn’t feel good enough to celebrate Halloween with my friends. Luckily, I didn’t feel terrible so I knocked Halloween out of the park (with the help of my awesome, cooperative bf) by being Lucille Ball from I Love Lucy

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Tell me I didn’t do an awesome job, I dare you!

I’m grateful for being able to enjoy myself (and maybe just a bit too much) and be the sassy, silly and wacky person I am, just as Lucy is too.

Be grateful for the good things in your life, even when they seem to be outweighed by the bad.

Night friends ❤

Zero To Hero

  
At some point in life, we will be broken. It’s inevitably a part of living. The hope is that we can rebuild and become strong at those broken places. Ernest Hemingway was a powerful writer and I find myself connecting to so many of his words. 

People with chronic pain or illnesses have a higher chance of being broken more than once, I think. There’s so much physical, mental and emotional struggle that comes along with the chronic pain we face. It’s a packaged deal and we don’t have the option to pick and choose which we go up against. 

For the past two months or so, my headaches have been relentless. Forcing me to force smiles and laughter. Making me work twice as hard as I normally would to do everyday tasks and things I need to do to get by. I’ve had some sincerely joyous, carefree moments within these two strenuous months. I do manage to have fun and truly laugh beside friends and family even during the worst of it. But when I take a step to the side and have a sidebar of my own, I have felt myself breaking to the point where I know that I’ve been broken by this life. My headaches have pushed tears through my eyes and created a nonstop state of frustration. It’s as if I’ve hit a wall because I have all these different directions I can go to try to figure out a “cure” or a diagnosis. But it’s hard to try to figure out which is the best road to go down first. 

I want to be one of the “some” that Hemingway talks about in this quote though. A part of the some that walk away stronger at my broken places. I’m determined, really, to be a part of that “some.” So I truck on, keep seeing different doctors, taking different tests and trying a wide range of tricks to try to help bring my headaches down even just a tiny notch. 

So if you’re feeling broken, just know you’re not alone. Know that you’re not a victim, because it happens to everyone. But also remember that you can take that feeling and build upon it. You can either let it continue to drag you down leaving you in pieces for someone else to try to put together, or you can become strong at those broken places and know that it will only turn you into a stronger fighter and more compassionate and empathetic person. 

Facing The Storm 

  
It’s one of those days where I’m running really low on spoons. Been laying in bed all day, drinking lots of water and tea and kind of just letting my headaches dictate my day & mood. Every day though, is a learning experience on how to manage and deal with my pain. Learning how to handle your chronic pain and keep on living a normal life is a journey in itself. Some days are harder than others, but it’s in our power to learn how to sail our own ship. 

Keep On Truckin 

  
Test after test. Doctor office after doctor office. There’s really no break when you’re trying to figure out what’s causing your chronic pain. I’ve don’t a number of X-rays, ct scans, and mris over the past few years. I don’t really remember how many.. So it always makes me uncomfortable to add another one to the list. However, I’m trying every possible route I can think of in order to (hopefully) get some answers as to what’s causing and how to treat my daily headaches. 

So today I did an X-ray of my cervical spine. Gonna see if it shows anything out of the ordinary. When one part of your body is messed up, it can affect other parts of your body as well. Neck issues are often linked to headaches or worsened headaches. So I decided to see if that’s a possibility in my case.

Happily accepting any good luck and wishful thinking!