SparklyAura

SOMETIMES I WISH YOU KNEW HOW THIS FEELS….

Sometimes I wish you knew how this feels.The searing hot pain in my eye, head, neck, face, ear, jaw and skin. The never-ending nausea & vomiting.  The overactive senses, light hurts, touch hurts, hearing amplified x1000, having the nose of a bloodhound even when what you are smelling is not even there. Not being able to find or sometimes comprehend words and the slurred speech. Can you even…

I disappear…

I have been having a pretty bad flare for almost the last three weeks. I need to write to get these demons out of my head. I hope that I can start to purge the negative thoughts by writing this post.

The chronic migraine pain & symptoms are nothing new to me, I shouldn’t be surprised how long this flare has lasted, right?? Well I’m not, but before this particular flare I had been feeling…

Checking in –

I’m so sorry, I have been neglecting my blog most of the spring.  It has not been far from my heart though.  There are a couple of things that have kept me away.

My migraine disease has been awful! I think mainly because the weather has been flip flopping so much.  Also, my Botox was due.  I was able to get it this week, thank God!!  But the migraine beast has made it difficult to concentrate…

I Have Found my Community Through Migraine

June 24, 2020

Originally seen on MigraineHeadacheAwarenessMonth.org followed by ChronicMigraineAwareness.com

I have had migraine disease since the age of 12 but did not receive a diagnosis until adulthood. My migraines remained episodic until July 2016, when I became chronic intractable. I had been ignorant about what migraine disease could be, never in my wildest dreams did I believe you…

Before I opened my eyes this morning, all I could hear was the obnoxiously loud ringing/buzzing from my ears.  I could feel the stabbing, searing pain encasing the entire right side of my head, down my neck & into my shoulders.  It is not going to be a good day.

As I am opening my eyes the light feels like hot flames to my eyes & head.  The pain extends through my jaw into my ear, my cheekbone…

So I came across this quote and it felt very relevant to the current crisis. There are so many uncertainties in the world right now that maybe it is hard for you to quiet the fears in your mind, I know that it is difficult for me. We already deal with uncertainties with our health, that this may be adding to our stress and in turn affecting the frequency of our migraine attacks. Have you all…

I’m already prepped, how about you?

Originally written for and seen on Chronic Migraine Awareness, Inc. by Kristen Estep

I would like to start by saying that I hope you are not quarantined, but if you are there are some lessons you can learn from the invisible illness community.  We are experts on self quarantine, this is our lives.  I’ll let you in on some coping strategies that I find very helpful.

With every cancellation,…

But You Don’t Look Sick….

If you have an invisible illness you have probably heard these words more than once. If you look put together and maybe even have a smile on your face or are laughing you’re fine, right?!?! If you are out having fun, at a family outing or even working, you must be better. All of these things are so untrue when you are living with a chronic invisible illness. Let me explain part of what I feel…

Headache on the Hill 2020

Originally written for Chronic Migraine Awareness, Inc. By Kristen Estep

Wow!! What an awesome experience!  We had an all time high attendance with 179 advocates from 45 states being represented.  I also don’t want to forget all of the…

#HOH2020 here I come!

In alittle over twenty four hours I will be on my way to Washington DC to attend my very first Headache on the Hill. I am so excited that I get to represent all people with migraine from the state of Ohio. When I applied for this position in November, February seemed so far away but time has flown by & now it is here.

I am getting my briefcase ready to go. I have my notes about our Senators…

HOH2020 It’s Almost Here!!

Headache on the Hill is fast approaching and I am so honored to be attending.

I am looking forward to not only meeting my fellow migraine warriors, but also learning from them.  I am newer to advocating for migraine and this opportunity is monumental for me.

This sounds kind of weird to say, but I am thankful for’ the beast ‘ because it has led me to all of you. No, I haven’t met most of…

When FMLA Runs Out

Juggling chronic intractable migraine and a career is a very scary, frustrating experience.  This is especially true when you run out of the job protection that FMLA gives you.  We end up walking a very thin line trying to keep our careers.  I don’t know about you, but my place of employment works on a point system for call offs. This means you are only allotted a certain number of points (call…

Good days vs Bad days

Sometimes it is very difficult to be positive about my journey through migraine. I have good days, bad days & everything in between. The good days seem to fly by, while the bad days seem like they last forever. On good days I can’t help but to expect the proverbial other shoe to drop, which ends up taking away from the enjoyment of that good day/days. I’m certain that other people with migraine…

What do you see when you look at me?

Before chronic migraine if you saw me out in public, you might have looked at me & thought I had it all together. I probably would’ve had a smile on my face, my hair done, dressed nice. “It doesn’t matter how you feel, it only matters how you look” (Lyric from Miranda Lambert’s song Mamas Broken Heart). That is the public persona that has been ingrained into me my whole life. You only show your…

How can you be strong when you feel so weak? You are strong because of every battle you have gone through & survived. You are strong because you have held on for another day or minute or second. You are strong because of the amount of physical or mental pain that you have endured. You are strong because despite your circumstances you get up everyday & function to the best of your ability.

You don’t get it…

This has been a subject that I have wanted to write about for awhile now. When you have migraine or any other invisible illness you are scrutinized for anything that you do, consume or cancel. People who do not have an invisible illness do not (can not) understand what it is like. No matter how many times we explain it to you, if you’ve never experienced it you can’t get it.

When you are…

Do you ever get a little bit cocky when you are feeling well? I know I do. Sometimes when you are feeling good, you almost forget about the beast. I get glimpses of my old life, my life before chronic migraine, and I start to foolishly think that I am beating this! I feel like I can fall back into my old routines, which were crazy busy, and keep up with people in general. I start making plans…