#HAWMC Day 14: A Case of the Mondays

Pain. We all feel it. It could be short lasting or seemingly never-ending. We get hurt, we cry, we heal.

My pain is constant. The throbbing sometimes has mercy and I feel “fine.” Other times, it’s relentless and merciless. This past week has been a week of the relentless kind of pain.

On my good days, I go to bed with a headache and wake up with one, but on my good days I am not bothered by it because the pain is so minimal that I’m able to wake up with a smile. On my bad days I go to sleep with a 7/10 headache and wake up with a 7/10 headache, or worse. I’ve been having more bad days than good, lately. It’s extremely frustrating. It’s more frustrating than people can imagine. It’s so frustrating that sometimes, it’s all I can think about. I can be with my friends, and I’m thinking about how my pain is never-ending. I can be in church, and I’m dozing off to think about how my pain won’t let up. It occupies all of my mind and energy.

It bums me out when I have to cancel plans because I feel crappy. It bums me out even when I didn’t even have plans, but I know that I’ll be staying in even if I wanted to make plans. It bums me out to know that I’m no where near as healthy as my peers and even so, no where near as healthy as I, my chronically ill self, have felt before.

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It can be hard to go to sleep and tell yourself to begin the next day with an open and optimistic mind, when every day feels like the same broken record playing over and over again.

Even though it’s hard though, I try my best every single day to remind myself to have a better mindset. I remind myself to attempt to shut off my feelings of “but tomorrow I’ll probably feel awful again,” and instead try to turn on my feelings of “but tomorrow, what if I feel even just a little bit better.”

 

Song Of The Week: “i” by Kendrick Lamar

Dreams of realities peace
Blow steam in the face of the beast
The sky can fall down, the wind can cry now
The strong in me, I still smile

This song can be interpreted many different ways, I think. However, I hear it as an anthem to loving oneself as well as standing up and smiling in the face of adversity and hard times.

The song is about someone who feels so small and defeated, yet has faith in God and stills smiles through it all. It kind of asks in a way, when it comes down to it, are you going to give into the fear, frustration and anxiety? Or are you going to stand up against all of that, lift up your head and keep on moving?

I’ve faced times when I wanted to give into my pain, allowing it to take over not only my body but my mind as well. After a while though, I know the right and healthy thing to do for myself is to pick up head and keep moving. To keep trying to find answers and to keep fighting.

This life is too beautiful and miraculous to let the bad stuff suck you in. Lift up your head and keep moving through whatever hard time you are facing right now. You all have so much to love about yourselves. Your beauty, creativity, kindness, intelligence, compassion, empathy and so much more. Love yourselves so entirely that it makes you want to stand up and scream just like Kendrick does in this song, yelling “I LOVE MYSELF!”

Where’s My Dawn?

As difficult as it has become, I try my damnedest to believe that it’s always darkest before the dawn.

For roughly the past month and a half, my headaches have not left my side for a single moment. They haven’t paused for interviews, social outings or even sleep. Something like this takes a toll on one’s emotional and mental state, not to mention physical as well.

I’m a very social young adult. I have a good group of friends that I really enjoy hanging out and going out with. I have amazing family who I cherish dearly and spend a lot of my time with as well. And I have a guy who has somehow learned to put up with me through thick and thin.

But I also have these headaches that don’t care if I see or spend time with any of these people.

Being cooped up on the weekends and not being able to go out and act like the 22 year old that I am has really started to create this grey, sad cloud around me. I know there are hundreds and thousands of other people who can relate to this in some way, and I feel for them.

I try to keep these posts uplifting and positive, but even I have my moments of weakness.

Anyone with chronic pain or illness has seen the darkest at some time, but the trick is to hold onto the hope that we will one day see the dawn.

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I’m in the darkest now, but praying that my dawn is trailing close behind.

Song Of The Week: “Shake It Out” by Florence + The Machine

and it’s hard to dance with the devil on your back, so shake him off. ooooh!”

This song captured me the moment I first heard it and will never get old for me. Not only is her voice moving and powerful, her the lyrics are as well. Her voice is so pure and strong, it’s hard not to be entranced by it. This song has such an uplifting feel about it.

I think it’s about letting the past be the past. About letting go of your demons so that you can move forward onto something better. About not letting something bad from the past hold you back.

However, I can relate it to my health as well. For people with chronic pain, it’s hard not to get angry because of the situation we’ve been handed. I, myself, have found myself multiple times being so angry and frustrated that my headaches have taken over my life and caused me to alter everything I do because of them.

However, constant anger just leads to your own demise. I try to get my anger out by writing, crafting, cooking, hanging with friends and listening to songs like this. If you focus on something better, something more positive, the anger can disappear. We need to make anger take a seat behind happiness and joy. This song really embodies that idea. That we need to shake off our inner demons, anger and frustrations. Shake it all off because it’s always darkest before the dawn. We go through the bad times to make way for more good times.

I listen to this song when I am sad & discouraged but also when I’m feeling proud and brave.

This song is definitely worth a listen (or a few)!

Once In A Lifetime People

  
I consider myself so lucky to have these kind of people in my life. I’ve been blessed with people who stand by my side and support me in everything I’ve been going through. They don’t falter or leave me alone. 

These people help me find silver linings when the clouds seem too grey. They keep my faithful and help me stay proactive in my search for answers. 

These people love me for me: chronic pain and all. They love me even though I much too often have to cancel plans with them because I don’t feel well. They stay in with me when everyone else is out having a good time. These people love me even though sometimes I get sad, frustrated and angry because of my health problems. 

I hope that you all have found your once in a lifetime people as I have. And when you’ve found them, don’t let them go. 

My Headaches, My Life, My Story.

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This is what someone with an invisible disorder and chronic pain looks like. While it’s not visible on the outside, it’s very much real on the inside. Even though I look like I feel ok, most of the time I don’t. Starting this blog and my Instagram account (@theheadacheheroine) has allowed me to open up more than I ever have before about my health journey. However, it has also left me feeling very vulnerable and nervous of what others may think. Still though, I’m so happy to be doing it because it allows me to spread positive vibes while supporting and reaching other people who may be feeling the same way about something in their life, health related or not. I hope to be able to support fellow chronic pain and invisible illness warriors stay strong through their own journey.

Therefore, I’d like to share my story with you.

I started getting exertion headaches around the age of 12. It was a new and terrible feeling. I played competitive fastpitch softball at that time (and up until I was 16) so I was exercising and exerting myself almost daily. When the heat was bad and the humidity was high, and I was exerting myself out on the field, I would always get terrible pounding headaches.Resulting in me laying down, sitting out games and practices and feeling like a bit of an outsider compared to my teammates. I wasn’t sure what to do about it, so I just ignored it for a couple of years.

By the time I was 14 I started looking into seeing a doctor for my headaches because they hadn’t gotten any better. Between the time I was 14 and 16 I had seen neurologists, ENT specialists, allergists, and general practitioners. I had undergone an MRI, CT scan, allergy tests and IV’s. I had tried a wide variety of medicines as well. Nothing seemed to help.

During my teen years, I also found myself in the ER more times than I ever wanted. Dehydration, repeated fainting, more dehydration, extreme stomach pains, and more dehydration (or what they claimed to be dehyrdation.) I never truly understood what was happening to my body. I was constantly interrupting big plans (New Years Eve parties, Mother’s Day, and surprise parties for family members to name a few) because my health kept sending me to the hospital. It’s a terrible feeling knowing that you’re the reason parties got canceled and peoples nights were ruined due to worrying about and taking care of you. (s/o to my older brother who didn’t get mad when I threw up on his shoes outside the house next to the ambulance, my best friend for sticking by my side in the ER on News Years Eve instead of at a party with all our friends, and for my parents for always telling me they didn’t mind spending hours upon hours in a cold, stale hospital room.)

It had come to a time where I had to decide that my health was more important to me than playing the game that I had such a passion for, which was softball. I was an athlete at heart. Since my dad was the head coach, him and I were the glue that kept our team together. Therefore, my quitting resulted in the disbanding of a team that had been together for 7 years.) It was the hardest decision of my life at the time, deciding to quit playing for good. It definitely had a significant impact on me mentally and emotionally. It led me to a sad period of my life. I didn’t know how to fill the hole that was once occupied with the love of the game and my teammates that I considered family. After a year of being sad, I decided to take charge of my health and see more doctors. This time, I was prescribed Topamax (an anti-seizure drug that is sometimes used to prevent headaches and migraines.) I was hopeful that this medicine would help me, but it did just the opposite. I experienced major negative cognitive side effects. I couldn’t retain information, my short term memory was crap and I just felt foggy and dumb. After a while I knew I couldn’t be on that medicine anymore. But this only lead to more disappointment and being unsure about the future. While I was still upset to not be playing softball anymore, I knew it was in my best interest and that it would open up new doors for me. Which it did. Instead of trying to get recruited to a school to play ball like most of my teammates were doing, I ended up at Virginia Tech. Which was the best thing that had happened to me in so long. I met lifelong friends and made incredible memories that I will never let slip from my mind.

During my time at Virginia Tech, I did trial and error with a number of prescriptions given to me by different doctors. Beta blockers, blood pressure medicines, anti-seizure drugs, OTC meds,etc. You name it, I tried it. I’ve gotten multiple blood tests done (one time 8 viles of blood at a time, to which I of course passed out during the process of taking my blood.) None seemed to do anything helpful. It was getting frustrating and redundant. At school, I ran into my other fair share of medical problems that either landed me in the ER or another type of doctor’s office. Thankfully, I had family and seriously amazing, loyal friends who sat by my side in waiting rooms and who drove me when I couldn’t drive myself. (You all know who you are, and I am seriously forever grateful and blessed to have you in my life.)

It kind of became my “thing.” You know how people have “things?” Some people have a singing talent, some people are always the top of their class in school, etc. Well my thing was always being in a doctor’s office or hospital. My thing is that I’m always getting blood taken. My thing is that I have a fainting problem. One time I called my dad from school and he answered with “What hospital are you at this time?” (Granted he was saying it in a joking manner…I think…but to his credit I actually was sick at the time.)

It’s not a “thing” I’m very proud of. But it’s something I’ve embraced.

Flash forward to now and I’ve kind of started from square one again. I’m consistently seeing my neurologist, trying out acupuncture, sleep studies, allergy testing, eye doctors etc. It’s such a trying process, but I don’t want to just give up even when I don’t see results. The thing is, I know there are people out there fighting for their lives. People who live at the hospital. People who have to deal with chemo and things so much worse than what I’m going through. People who are so much stronger than I’ll ever hope to be.

While I constantly pray for those people and hope with all of my heart that they find the answers and cures they deserve and need, I’m still proud of myself for fighting my own battle.

I’ve learned a lot about myself throughout this whole process. I’ve learned that I can get knocked down and get back up again. I’ve learned that no matter how many times I get blood taken, I will never get over my uneasiness and hatred of needles. (seriously, I get weak every time.) I’ve learned that it’s ok to cry. To feel sad and frustrated. Defeated and broken. But in contrast, I’ve learned how to make myself keep being proactive and not to give up. I’ve learned coping methods and survival techniques. (AKA I’ve learned how to really binge watch Netflix and how to match my mood with a fitting ice cream flavor.)

I’ve learned a lot about the people around me as well. I’ve learned that people come and go and that that’s ok. Some don’t understand while the others try their best to. I’ve learned that I have the most amazing parents and siblings who go to doctor visits with me, check in on me, encourage me, and do whatever they can to help me feel better. I’ve learned how to tell who my really close friends are and how to never let them go. Meaning, I’ve learned who my “people” are. The ones who encourage me when I’m discouraged. Build me up when I’m feeling broken. Be strong for me when I’m too weak to be strong for myself. They can say the words I need to hear even when I don’t want to hear them.

I’m not sure what I really expected people to think about me and my thoughts when I started this blog. I obviously knew I was letting people, friends, family and strangers, into my mind after I published my first post. People will have their thoughts and opinions, I’m ok with that. I’m ok with people reading every post, looking at my blog once in a while and I’m also ok with people not ever even taking a glance. That’s because I started this for two reasons, and two reasons only. I started this blog to help me find solace through writing. To really create an outlet for myself as I continue to go against this obstacle that doesn’t seem to have an end in near. Secondly, I started this so that I could maybe reach other people who are struggling with something similar. I hope to encourage other people and create a support system for someone who may not have the support they need. I do this to hopefully help people stay positive even when the day seems to have nothing positive in it.

So I thank you for reading, supporting and encouraging me.

Maybe now, someone else will find inspiration to take their own personal story and struggle and turn it into something positive as well.

Tie A Knot & Hold On

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We all feel like we’ve reached the end of our rope sometimes. I know I’ve hit times where it feels like even if I put forth all my effort into finding answers, it won’t amount to anything. So why keep trying? I’ve hit points like this where I decide to just deal with the pain and stop bothering to continue to seek help. It’s hard to keep trying when you just don’t see the point.

While we’re all allowed to feel this way (an it really is inevitable for people with chronic pain and illnesses), it’s just not healthy or helpful to ourselves.

When we feel this way, we have to try to find new routes and alternatives instead of hitting a dead end. We have to tie that knot and hold on. Hold onto the hope that we will eventually find something of worth. Hold onto the feeling of joy we get when we find something that actually does help. Hold onto the idea that we can create new paths for ourselves when we truly try to.

The Search For The Right Doctor

For people with chronic pain, disorders or illnesses, finding a doctor that really listens to you, answers every single question, and actually is proactive about finding you answers, is very difficult. It’s a tasking processs and by no means a short one.

I started getting headaches around the age of 12 and started seeking treatment around age 14. I have seen so many doctors I forget about them until my parents mention something like “well remember that one doctor said…” And I go “oh yeahhh…forgot about them.” 

Countless practices, front desk faces, nurses and doctors. It’s kind of like that rascal flatts song that says “God blessed the broken road that led me straight to you.” Yeah that’s how I think of it.

After all those years and hours spent waiting to see a new doctor, I found a practice and doctor I really love. I was there today (again) and I felt like when I was talking to the PA, she was actively listening and giving me all of the information and advice she had and could think of.  

 
You know it’s a good practice too when you have to book like 3-6 months in advance an appointment to see the actual neurologist. Before that, you have to see the PA. It shows he’s in very high demand, and while my schedule doesn’t like that, I really do. Gives me confidence that he knows his stuff. 

So to everyone out there who is still searching for a doctor that seems to really want to listen and help, they’re out there. Just keep looking. Keep up that trial and error process to eliminate the ones who aren’t helping. Don’t let any doctor dismiss you or your problem!