The Reasons I Sometimes Don’t Practice What I Preach

Why is it that we can urge people to take control of their health when sometimes we aren’t even taking control of our own?

Do you ever catch yourself doing this?

This is me calling myself out on doing it.

Recently, I have been ignoring new symptoms or pain and procrastinating making new doctor appointments because I’m afraid of hearing a new diagnosis, or having a doctor tell me I that I need to try a new treatment. I have been ignoring things because I am afraid to deal with what comes next.

The last few days, I have been thinking a lot about why I have been doing this – trying to get a better understanding of whatever is subconsciously holding me back from practicing what I preach to so many.

Here’s what I’ve come up with:

New medications make me uneasy

I’ve been seeing all different types of doctors more regularly than your average person since I was about 12 years old. For a while, I was rotating through so many different medications/pills for my headaches & migraines that I honestly don’t remember a lot of the ones that I tried. I’ve experienced little to no side effects and I’ve also experienced some pretty intense negative side effects. Because of my experiences, I get uneasy about trying new medications. I also get uneasy about the fact that I continue to put these chemicals in my body without knowing how they will affect me. So, over the years, I have become more hesitant to readily fill a prescription a doctor quickly suggests.

I don’t want a diagnosis of yet another condition/syndrome

Another reason I subconsciously procrastinate dealing with new pain & symptoms is that I have received four new diagnoses in the last four years – a severe food allergy, Narcolepsy w/o cataplexy, Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). So I am scared that if I go to another doctor with new pain or new symptoms, they’re gonna slap yet another label on me. Which, I know, it’s better to have the knowledge than to be ignorant to it. And I can’t predict the future. And I shouldn’t worry about things before they happen. I know. I get it. But it’s hard to think that way when I’ve been through this pattern of “go to new doctor, get new diagnosis.”

I can’t afford another condition/syndrome

It’s uncomfortable to talk about finances and even worse to think about them. But as people with chronic illness know, a lot of your money goes toward your health (or rather, trying to fix it.) Most people my age are both 1) spending their money on travel & activities and 2) saving it. I feel like I’ve had to pick one of the two. And I can honestly (and either shamefully or shamelessly, I haven’t decided yet) say that I have not been saving mine, and instead been spending it on my health & living life as an adventure. I want to participate in the things my friends are doing. I want to see the world. I want to make memories. When you’re sending a big chunk of your money on doctor visits & treatments, you really have to pick and choose where your remaining money goes. So I know that seeing a new doctor and possibly paying for new treatment only means more of my money will not go where I want it to.

I know, I know – this sounds like a whole lot of “cry me a river,” but it’s something I think a lot of people with chronic illness deal with.

Like anything else, though, I know it’s not OK to ignore something just because you don’t want to deal with it. I know that the reasons I have listed above are very valid reasons for me to be hesitant to address these problems – but they aren’t reasons for me to pretend these problems aren’t there.

I write this post as a way to 1) hopefully write something that you can relate to, so that you don’t feel so bad if you are also procrastinating dealing with a new health problem or symptoms and 2) to hold myself accountable.

If we talk the talk, then we should also probably walk the walk.

blogher creators summit

Highlights from the 2018 BlogHer Creators Summit

This past week I had the exciting opportunity to attend the BlogHer Creators Summit. It was two days full of bad ass women, inspirational stories & journeys as well as advice that is applicable to me in both my professional and personal life.

This conference was for informing and inspiring female content creators who are looking to spread their content as well as their personal stories to their audiences.

I attended numerous panels, interviews and breakout sessions that informed & inspired me in two ways: 1) informed me on ways I can better strategize for my blog and social media accounts as I create content for the chronic illness community and 2) inspired me to pursue my passions, to feel confident and that hard work can definitely pay off.

It was an incredible experience and I definitely recommend it! But better yet – in January, there will be a BlogHer Health Conference (woo!!)

Below are some notes on what I took away from specific sessions at this conference, broken up into two categories: Related to Content Creation and Related to Everyday Life

Sessions On Content Creation

“Meet Marie Forleo”

  • Consistency is key and is an underrated trait

“#BrandBallers”

Nitika Chopra (a Chronic Illness Advocate) was on this panel!

  • What companies are looking for in influencers that they want to partner with
    • A storytelling element
    • Does their ethos align with the company’s ethos?
    • Are they a fan of their brand?
    • Do they have authenticity?
  • What influencers should look for in companies they want to partner with
    • A brand that is aligned with what their community needs
    • Figure out how you can best serve your community and find a brand that you can partner with to do exactly that
  • Content creation diversification
    • Control your homebase – build up a really strong blog or one single platform
    • When creating content, ask yourself – will this serve my community and how? If you can’t answer that question, don’t post it
    • Focus on other people when creating, not on yourself

“Visual Storytelling”

  • Important things for creating video content:
    • Make sure the sound is high quality
    • Get nice lighting
    • Consider editing your videos
    • Ask: how does your audience want to be spoken to?
    • What is your voice?
    • What is your unique story to tell?

Sessions on Professional Goals & Personal Life

Some of this will relate to living with a chronic illness, the rest of it is just great, relatable, noteworthy advice & words of wisdom.

“#WinningWomen” with Gabrielle Union

  • Everyone is suffering from something, but sometimes we feel like we are on an island; so bring comfort to people however we can

“You are not alone and there is nothing wrong with you.”

  • We internalize so much often because we fear judgement
  • It is ok to say to doctors “actually, that doesn’t seem like what I have.”
  • You do not have to take on doctor’s diagnosis as a sure thing. Get second opinions, explore other options; you are your own best advocate.
  • “It is ok to be the pesky patient.” YES, THIS. We shouldn’t go to doctor’s offices leaving with the same issues and no answers.

“You are not lucky. THEY are lucky.”

“#WinningWomen” with Maria Menounos

  • You need to be your own best advocate
  • You know yourself and your body better than anyone else – you have to make choices based on how you feel even if doctors don’t agree with you
  • Statistics are just numbers – listen to what your body is telling you
  • Treat your health from every angle – physical, emotional and spiritual

“We are everything to everyone and nothing to ourselves.”

  • With stillness, we are able to hear what is being told to us by God and can listen to what our bodies are also telling us.

“Everything has a purpose and nothing is a coincidence.”

  • Life is happening FOR me, not TO me.
  • There is a reason things are happening for you, no matter what it is that’s happening – good or bad
  • Keep a pain journal and tell your doctor everything at your annual physical
  • Keep a regular journal – for random revelations
  • Focus = Feeling
    • Whatever we choose to focus on, that is going to dictate how we feel; if we decide to focus on the negative, we will feel negatively.
  • Trust your gut and instinct and be ok with people thinking you’re crazy – you are not crazy, you are wise.

“Passion to Profit”

  • How to find your passion
    • Document, don’t create → think introspectively about what you want, what you believe in, etc., rather than trying to create an image. Don’t echo what already exists
  • Your point of view is really what differentiates you
  • When creating content, think “what real value does this provide to my audience?” and if you can’t answer that, then don’t post it

blogher creators summit

FDA Approves First Migraine Prevention Drug!

Just last week, the FDA approved the first drug designed to prevent migraines! It’s been all people are talking about in the headache/migraine community, because it’s a pretty big deal!

Living with migraines is tougher than most people can imagine. What can be even tougher, is finding the right doctor, the right treatment and finding both without going broke.

Check out a few links that I found to be helpful in reading about this new FDA approved migraine prevention drug and how it can be accessed:

 

When Sleep Disorders Go Unnoticed

An estimated 50 to 70 million Americans chronically suffer from a sleep or circadian-related condition (Project-Sleep). And it turns out I am one of those people. However many sleep disorders go undiagnosed or unnoticed simply because people don’t realize they have them. I was one of those people for so many years of my life. I wasn’t diagnosed with narcolepsy (without cataplexy)until the winter of 2015. But I was having symptoms, that I can remember, for several years prior to that.

Growing up, I was that teenager that slept until noon and had to have my parents force me to wake up, get out of bed and do something productive with my day. Yes, many teenagers sleep until noon. I mean why wouldn’t they? They have no responsibilities.

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And yes, sometimes I would go to bed much later than socially acceptable at that age, leading me to sleep until noon. But, sometimes I would go to bed at 10 pm and still was able to snooze and snooze until also much later than socially acceptable. I never thought anything of it, though. But I had created a reputation for myself in my family as the girl who sleeps the day away. I tried hard not to carry that reputation over into school, but alas, it happened. In my senior year government class, for example, there was one time where I fell asleep (in the front row, mind you) and hadn’t realized I fell asleep until my sleep talking woke me up. I sat in the middle of two girls who looked at me and kindly said while pretending they weren’t extremely confused, “Are you ok? Were you sleeping?” See, it wasn’t normal to sleep that much during school. It really wasn’t the cool thing to do.

When I went off to college, I realized that I could nap whenever I wanted and wouldn’t have my parents waking me up every 5 minutes telling me to get up and sweep the kitchen or some cliche chore that they made you do just so you were doing something. So when I went to college I was like…wait I can nap in freedom? Whenever? That’s the American dream! And as a true patriot, I lived out that dream. But, I never realized that I napped a lot more than some of my other friends did. I napped through some evening classes and didn’t care because my body was so tired.

There are many stories from my college years that I realize now were not normal….Yes, sometimes students fall asleep in class (late nights doing absolutely nothing with your friends or alcohol often caused this), but not as often as I did, it seemed. The looks I would get from my roommates and friends when I either slept in past my class or when I told them how I kept falling asleep in class, that look is definitely a judgmental one even when they act like they aren’t judging you. It ain’t a good face.

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One time during my freshman year econ class, I apparently fell asleep. I say apparently because I didn’t realize it until I jerked awake suddenly (are you noticing a pattern here?) I looked at my two friends sitting next to me and said “why didn’t you wake me up?” And they said “because you were snoring, but like a cute snore. We didn’t want to wake you.”

I also specifically remember my senior year, trying so hard to force myself to stay awake during my Communications Law class. And this wasn’t because the thrilling content of comm law didn’t have me on the edge of my seat and it wasn’t because of a lack of effort to pay attention on my part. I remember after a few classes of dozing off in the back of the room, that I made an effort to move to the front row. I told myself if I sit in the front, there’s no way I can’t pay attention therefore I would stay awake. Sit in front + pay attention = stay awake. Basic math, right? Well I was never good at math. I had to force my eyes to stay open. It was painful, honestly. Like, physically painful because my eyes would be so incredibly heavy and I had to actively out effort into making sure they didn’t close right in front of my professor. And the thing is, this class was my first class of the day, and it was at 2 pm. So it’s not like I was waking up at 6 am for an early class. I was easily getting 9-10 hours of sleep each night, if not sometimes more than that. So I was getting enough sleep, I was making full effort to pay attention in class, yet I still struggled to stay awake.

giphy3

After graduation and convincing myself that the college life was the cause of my exhaustion, I got my first full time job. It was during training one day where I was literally dozing off while a colleague was training me that I realized this was a problem. But yet, I didn’t realize it was a problem that could be diagnosed. And I wasn’t sure how to solve my problem. I also had other health issues to focus on so my sleepiness took a backseat.

Actually, the only reason I got the diagnosis for narcolepsy was due that other health issue I had: my chronic daily headaches. The PA I had been seeing for a couple of years who had been with me through each treatment that I had tried and that had failed me, suggested I do a sleep study to see if I had sleep apnea (since I consistently wake up with headaches, she thought maybe I wasn’t getting enough oxygen during the night.) After the sleep study, my PA pointed out to me that I didn’t have sleep apnea, but surprisingly enough, I had narcolepsy w/o cataplexy. She explained that even though this was not expected, it was actually good to see test results that didn’t show as “normal” because i finally had some answers. I finally had reasons for all of the above scenarios. I had a reason for falling asleep during classes, for sleeping in until noon and for dozing off during a full time job. I finally understood why.

It’s extremely frustrating to feel symptoms and have no idea why they’re happening and have nothing to connect them back to. And to be honest, I was completely ignorant to sleep disorders in general and it never even crossed my mind that I might have been living with one. If it weren’t for my PA suggesting that sleep study, I’m not sure when I would have found out I had narcolepsy. Perhaps I still wouldn’t know today.


The message here is that it’s so important to learn the signs of sleep disorders, because sleep disorders are invisible and difficult to detect. Sleep health is much more important and impacts our overall health more than most people realize.

Take a look at this website, Project Sleep, to learn more about sleep conditions/disorders, how to detect symptoms, and what to do if you think you may have a sleep condition/disorder!

 

Disclaimer: The Headache Heroine website and blog does not provide medical advice, diagnosis or treatment.
Content from this website and blog is not intended to be used for medical diagnosis or treatment.  The information provided on this website is intended for general consumer understanding and entertainment only.  The information provided is not intended to be a substitute for professional medical advice. Please consult a medical professional for professional and medical advice.

Scars

Scars. We all have them. Whether they’re visible on our skin or deeply hidden underneath it. Either way, we often times try to hide them for everyone else. Doing our research into the most effective cream or at home treatment to rid our skin of its imperfections. Putting on a brave face for the world, giving into our vices or faking love for someone or something else to protect ourselves from whatever imperfections we feel we have on the inside.

Why do we feel the need hide them, though? Is it because we’re afraid of what people may say or think? That they might point, stare and ask how we got those ugly scars? Because if they stare, then we feel vulnerable, self-conscious and very aware that we don’t look the way that we think we should. Maybe we don’t want to explain how we got them: A noble military wound. The evidence of a stupid, teenage stunt. An accident due to being in the wrong place at the wrong time. Because if we have to explain how we got them, then we’re just reliving those bad moments that we try so hard to forget or are too embarrassed to reveal. We hide these scars so we don’t scare off the unknowing people who may raise their brows when they see them. They may become fearful of the things that gave them to us, thinking that maybe they too will be victims of similar situations.

But we fear the same things when dealing with the scars others can’t see, as well. Why do we feel the need to hide those? Are we afraid that if we open up about them and make them visible to everyone else, that it’ll make them that much more real? Maybe people will judge. The people who seem to have nothing breaking them on the inside will judge and we will feel our wounds reopening, increasing the risk of infection with every word that reluctantly spills out of our mouths. They will point and stare and wonder how we got these scars. Maybe we don’t want to explain how we got them. A broken heart. A broken home. Constant uphill battles that we can’t seem to win. Because if we tell them how we got these scars, we’re reliving the moments that broke us. The moments that sent us into a darkness of which maybe we’re finally finding some light in. We don’t want to share these parts of ourselves with others because it could scare them off. Make them fearful of the things that gave them to us. Questioning if they, too, could be a victim to similar situations.

Now you see why, of course, we try to hide them. We don’t want to put ourselves at risk by exposing them. And that’s because people can’t understand how you felt when you got those scars. They can’t put themselves in your shoes because there’s a chance they haven’t been in similar situations themselves. They were never in the military, or never got hurt doing something a stupid teenager would or they never were victim to an accident by being in the wrong place at the wrong time, So yes, you can hide your scars with layers of makeup and clothes. Yes, you can hide your imperfections from other people who may not understand the physical pain that led to those scars because they don’t have any themselves.

But when you feel like hiding the scars that aren’t visible, remember that everyone has had a heart that needed mending at one point. Everyone has scars on the inside, just like you. It’s just, that everyone pretends not to. So people come across like everything in their life is as it should be. We look at them and see only what they want us to see. That things are great, always have been and always will be. When in reality, below the surface, they aren’t as perfect as they look to be. Therefore, we don’t see past other people’s facades, which results in us feeling alone in our suffering. But the fact is, we wouldn’t feel so alone if we knew that other people were trying to heal similar scars just as we are. So, if we open up our hearts to others, and share with them the stories of our wounds, we would end up finding that they too have very similar stories. If we stop hiding the imperfections in our heart that make us who we are and the stories that made us the way we are, everyone else would see that they weren’t alone.

So, I’ll share some of mine.

I struggle with chronic headache disorders that have beaten me down many times in many ways. They’ve broken my spirit, tested my faith and beaten my body. They stir and strengthen my anxiety and make me familiar with a level of pain of which I’ve involuntarily learned to fight through. They’ve stolen from me and they continue to steal from me.

I’ve had many setbacks in my health. New diagnoses, new medicines with no new results and new doctors. Meaning, more symptoms, more side effects, more time wasted in waiting rooms and more blood tests, IVs, MRIs, you name it.

I’ve loved and I’ve lost. I’ve experienced a heartbreak or two. I’ve gone from being someone’s “person,” to being a distant familiarity, to being a stranger.

I have family members I’ll only ever know through stories I’m told. My vivid imagination giving life to people I’ve never met or never grew old enough to form a relationship with.

I’ve lost friendships to time, distance and the inevitable changes that life brings. Bonds that were once close have melted away. People who I shared belly aching laughter with now feel like people I would have to reintroduce myself to.


Maybe your scars look a little similar to mine. Maybe your scars look completely different. No matter how we got them, we all have them. So instead of pretending we’re all untouched and unscathed, maybe we share our stories and help heal each other’s scars.

Patience is A Virtue

Growing up we are told to “be patient.” Starting from when we were just little ones, we would hear “be patient” from our parents as we relentlessly tugged on their clothes to get their attention. As adolescents, we would beg for the newest thing to keep up with the trends and fit in with our friends. “Be patient,” our parents nagged.  As adults, we want our dream job right out of college, we want to own our own house as soon as we can, and we yearn for our fairytale relationship that we so envy in other people. “Be patient,” we hear from all directions. In an environment where everything is so rushed, it’s hard to practice that particular advice that we’ve been given since day one.

 

Patience is a weakness of mine. I’m notoriously impatient, actually. I have a bad habit of interrupting people when they talk, I sing lyrics to songs two seconds too early and I get so antsy waiting in lines that sometimes it physically pains me. But where I’ve been most impatient, lately, is with my health. I’ve been going through another bad spell–headaches pounding when I wake up that, more often than not, get worse as the day goes on. Leaving me frustrated and pouting, or pushing myself past my limits and making the pain worse.

 

I’ve made a lot of changes in my life recently, though, so I know there are multiple factors to consider when trying to figure out why my headaches have taken a turn for the worse again. I moved into a new house, I was on and off my Vyvanse for my narcolepsy, the season is changing, my allergies are kicking in, the list goes on and on.

 

But instead of being patient and taking it day by day, I’ve been jumping to conclusions quicker than most. I have been automatically assuming that it’s my house that’s making my head worse. Or that my chiropractic and botox treatments are no longer working. I always assume that I’ve figured it all out and that I’ll just never feel better.

 

Take it from me, it does NOT help to be impatient in this way. Well, it really doesn’t help to be impatient in any way, but you get the point.

 

For me, and others who have multiple chronic illnesses, it’s so important to remind ourselves that there are so many different factors at play when it comes to our symptoms. It’s never just one thing for me that is causing my symptoms to flare up badly. My headaches are affected by countless factors: for example, humidity, allergies, the heat, my environment, how tired I am, exercise, stress, anxiety, etc., etc. It’s more often than not, a combination of a variety of things. Which makes it very hard to pinpoint what is causing the flare. Which is why my impatience usually kicks in full gear–because I can’t pinpoint a reason and therefore cannot see an end to the flare in any foreseeable future.

 

So here’s where I tell you the words that you’ve been hearing since day one: Be patient. Take it day by day, literally. Each day is a new day with the possibility that something may change–some things may get better. But the fact is, we won’t know until that new day comes. So take a deep breath, and be patient.  

Be joyful in hope, patient in affliction, faithful in prayers.

-Romans 12:12

2017 WEGO Health Awards–Vote for The Headache Heroine!

I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram  and Best in Show: Twitter.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

Being nominated means that I have in some way, shape or form helped another person like myself–someone who struggles with health issues and who may have at one point felt or still feels totally alone in their journey. I’m so glad that I can use my experience to empower others to feel empowered.

I’m looking to you, my incredibly supportive network, to help endorse me for this award.

Click here to be taken to my WEGO Health Awards profile and click “Endorse” under my nominee photo. You can vote twice–once for each category that I have been nominated in!

If you’ve ever felt touched by something I’ve written and shared, if I’ve ever made you laugh or inspired you to keep fighting–please consider endorsing me for this award!

Thanks fam 🙂