Perceptions

"Don't judge a book by its cover."
"Walk a mile in their shoes."
"Judge not, or you too will be judged."
"When you judge another, you don't define them, you define yourself."

We know it. We know somewhere deep inside that it's wrong to judge, but how much do we really judge others based on lack of information?

I have had some great doctors. Doctors that truly took on their oath to help and heal. Doctors that have hugged me, held my hand, handed me boxes of tissue, listened, researched, and cared.

I've also had some doctors that took that doctorate degree and held it high above them like a neon sign of know it all jackassness.

It's hard with a chronic condition to see doctors that don't know my case. They judge. They have to make judgments to provide you with appropriate care. I get that. They see "chronic" and my list of meds and automatically assume. Assume I'm looking for narcotics. Assume I haven't done all the right things and that I've caused it myself. Tell me my primary doctor is wrong for what medications I take. Tell me I'm causing my own pain.

Gratefully, I have only encountered a handful of those second kind of doctors, but when you do, it feels as though you're being kicked while you're down. If I go to an urgent care facility or the emergency room, I'm not just being flip. I live in a daily pain level of a 6/7. When I start to hit an 8/9, and can't control it at home, I'm looking for help. Real help. Like I can't lay in bed anymore with this pain help.

All this to say, I ask that next time you meet someone and make an automatic judgement based on their health, take a minute and consider the part you don't know...their journey that is only within their own life...the experiences only they know. Because, honestly, if you don't, you might end up on their shit list.

Advice: Solicited or Unsolicited

When I came across this clip art treasure, it was perfect! I can't tell you how many times people tell me what they do, what their sister does, or about their great aunt's cousin who got knocked up and cured her migraines.

I realize that in these instances, people are genuinely trying to help...for the most part. (Except for the person who said if they had to live like me, they'd just slit their wrists. But sayeth the naysayers.)

I'm on Facebook. I've seen the picture of the girl with her hands/feet in the sink and an ice pack on her neck. I've read the disgusting green smoothie one. Yes, I am familiar with essential oils, and, no, your "morphine bomb" is nothing like morphine. False advertising. The new one is the salt thing. Basically all ways to cure migraines.

I'm not saying these things can't be beneficial to someone, but I'm too far down that path for those to help. Plus, the word CURE bothers me. Migraines are a neurological disease. Scientists have actually identified the gene that holds the migraine disease. It is not curable, but it is treatable, which is where my journey continues.

My Story

My journey with migraines started when I was 8 years old. I was in the 3rd grade with Ms. Looney. (She got married, but Looney is such a great name, I can’t remember what her married name was.) My brother and I carpooled to school with neighbors. It happened to be one of the days my mom was late coming home and we got home before she did.

I can remember sitting on the front steps at our house, waiting on my mom to get home, with my head in my hands in tears. I remember how much it hurt and then I remember throwing up…rectangular pizza from school lunch. (Now that may not mean anything to you, but know that I’m a teacher, so I get to revisit this pizza on a frequent basis and it still makes me sick to my stomach.)

Fast forward to college years, where they became more frequent, but still manageable. When I began working (coincidentally) is when they began to ramp up. They still weren't to a point where it wasn't manageable until 2008.

In 2008, I saw my first neurologist. The famous Dr. Ford with the Ford Headache Clinic. Dr. Ford was a friend of the family and took me on as his favorite patient. I wanted to learn about my condition, and he wanted to share what he knew. He was wonderful for two years. At that point his regimen he knew did not work for me anymore as my migraines grew in frequency and intensity.

My second neuro was Dr. King. He was young, was using Botox (brand new at the time), and progressive. I knew this was going to work. He started me on basic migraine prevention medications – none of which helped or improved my “headache free” days. I went on to try Botox, which did wonders cosmetically (even though it took away my teacher look), but didn’t help the migraines. At this point I was chronic. I experienced more headache/migraine days than I did pain free days. Which is where Dr. King admitted defeat, said he could not help me anymore, and sent me to pain management.

Pain management was a joke. I wanted to fix the underlying problem. They wanted me to take meds and get nerve blocks and trigger point injections and Botox (because their doctor was so much better than my last one). So, being a good patient (and desperation) led me to an occipital nerve block on both sides of my head, trigger point injections in my shoulders, and another round of Botox. None of which worked.

Before I continue, let me explain Botox procedures for chronic migraines. I do this because I always hear, “I wish insurance would cover Botox for me!” Botox for migraines is a set of 31 injections in your head, neck, and shoulders. In fact, here’s a nice picture for visual learners:

Don’t ever tell me you wish you had migraines so that you can get Botox. I may throat punch you. I went through 4 rounds of this procedure. P.S. They don’t give you anything to take before this to calm you down. You just get to be awake and have needles with poison shoved into your head.

(Steps off Botox soapbox.)

In June of 2012, I had my last pain free day to date. Why can I remember this? It was my last moment of freedom from this disease.

Then came neuro #3. He met with me, looked over all of the treatments and medications that I've tried and said he couldn't help me. Referred "people like me" to Emory University in Atlanta.

Emory took one look at my list, told me I couldn't be helped and then referred me to Michigan Headache and Neurological Institute.

Michigan told me that I had to wean off my medications before coming up there and that my insurance would only cover 3 days inpatient. My wonderful doctor said she'd never ask me to come off of everything at once and would actually put me in the hospital to come off of them all. So what can they do in 3 days? I'm not so sure, so that's out of the picture for now.

I have several reasons I’m ready to share my story, and the nitty-gritty details of it.
1. I want you to understand what this neurological disease is.
2. I hope that one person can use my experience to help them.
3. I want to raise awareness for chronic migraines.
4. I want you to know that if you experience chronic pain that you are not alone.

So as I end my lengthy explanation of my journey to where I am today, I plan on sharing my story (in more detail), my experiences with health care providers and medications, and ultimately lead you to an understanding that this is truly a debilitating disease.