Migraine World Summit

CLICK HERE

The Migraine World Summit started today. I just listened to the first lecture / presentation, and I found it very informative. The presentations are available free for 24 hours from when they are posted online. There is an All Access Pass that you can purchase, so that you can watch / listen at your leisure (part of the proceeds go to migraine research). They have a website and Facebook page, and it runs daily from April 15-20, 2016 - the schedule is available on the website.

*** If you do order the All Access Pass, please use THIS LINK (or click on photo above) so I get credit for referring you!

Heavy Baggage

I've always loved reading and learning. That hasn't changed. But, the time has come to unpack and face the heavy baggage of that love. Let me explain...

I have boxes upon boxes filled with books, binders, and notepads. They no longer seem to have a place in my life. Yet, I struggle immensely with even the thought of getting rid of them... as if, by doing so, it would somehow negate the knowledge and lessons I acquired through them.

One of the professors at my Alma Mater, University of Dallas (UD), said that the purpose of the school's intense Core Curriculum is to learn from many of the great thinkers, and then to formulate our own worldview. The UD website states that:

The Core is an opportunity to inquire into the fundamental aspects of being and our relationship with God, nature and our fellow human beings. The Core curriculum embodies the University of Dallas’ dedication to the pursuit of wisdom, truth and virtue as the proper and primary ends of education.

I feel like I've learned from every book, article, and class I've encountered. I may not have enjoyed or taken something from each one to add to my worldview, but each one taught me something. And, in that, it's difficult to dispose of them.

There's an added piece of the puzzle, though.

I envisioned a life where I would be a professor. I would conduct research, write papers and books, and teach students. I would be referring back to these books, and possibly to some of my notes (if only just to see how my perspective might have shifted over time). They would serve an important role in my life.

But, since my car accident (7 years ago!), a lot has changed. Many of these books have remained in boxes that entire time, while others have only been moved from boxes to bookshelves and back to boxes.

For the time that they were on the bookshelves, I would sometimes feel like they were a visual (and painful) reminder of how much in my life had changed. I haven't been able to read and write like prior to the accident. I felt like I had lost the ability to be a scholar, and that broke my heart.

I was cleaning one of our bedrooms yesterday... the one with half of the closet full of those many boxes of books, binders, and notepads. I felt my heart start to pound quickly in my chest, but I didn't have a panic attack. I'm taking that as a sign that it's time to try to deal with the boxes and the related emotions that will surface.

I'm not sure how to best face all of this, but I think it's time. I'm not going to just dump everything out. I'm going to go through the boxes (when hubby is here to help me safely move them from their resting place): carefully considering what to keep and what not to, thanking each of them for their service and place in my life, and then either donate, sell, or recycle.

I know that this is going to take some time, but it's time.

30 Things About My Life With Migraine

Kerrie Smyres started a "30 Things About Your Life With Migraine" meme to encourage others to share their experience with migraine. Migraine and Headache Awareness month is a great time to share, so here we go.

1. My diagnosis is: chronic migraine with and without aura.
2. My migraine attack frequency is: I have some level of head pain daily. 
3. I was diagnosed in: 2002 with migraine, becoming chronic in 2008.
4. My comorbid conditions include: depression, anxiety, fibromyalgia.
5. I take one medications/supplements each day for prevention and four medications/supplements to treat an acute attack.
6. My first migraine attack was: I'm not sure. The more I learn about migraines, the more I believe that I've dealt with them since childhood.
7. My most disabling migraine symptoms are: pain, fatigue, cognitive difficulties, aphasia, sensory sensitivities (to light, sound, smell, taste, touch).
8. My strangest migraine symptoms are: olfactory hallucinations.
9. My biggest migraine triggers are: weather changes, lights (especially bright and/or flashing), odors / fragrance / smoke, foods / food additives (bananas, artificial sweeteners, nitrates / nitrites, MSG).
10. I know a migraine attack is coming on when: I have difficulty controlling body temperature and moods, my ears feel hot and achy, increasing visual disturbance, certain cravings, aphasia, inability to focus.
11. The most frustrating part about having a migraine attack is: being suddenly unable to function well, and not knowing when one will hit or how long it will last.
12. During a migraine attack, I worry most about: how well my migraine treatment will work, and how long I'm going to be out of commission.
13. When I think about migraine between attacks, I think: please don't worsen today.
14. When I tell someone I have migraine, the response is usually: kind, but often indicative of the lack of public awareness of what migraine truly is.
15. When someone tells me they have migraine, I think: that migraine is so much more common than most people think. I also think about how I might be able to help them cope with migraine.
16. When I see commercials about migraine treatments, I think: how far we have to go (and how important it really is that we do so, every chance we get) to inform and raise awareness of migraine and the potentially debilitating affects this disease. 
17. My best coping tools are: my faith, distraction (often involving Netflix).
18. I find comfort in: my husband, my dog, my house, my support system (family and friends, both in person and online).
19. I get angry when people say: "It's just a headache," which is sometimes followed by,"Just take a pill and keep going / move on" and/or "It can't be that bad."
20. I like it when people say: a sincere, "You're in my thoughts and prayers."
21. Something kind someone can do for me during a migraine attack is: allow me to escape to a dark, quiet place. Ask if I need anything (water, food, blanket, pillow, to be alone, etc) to help make me more comfortable. Be patient with me, as it can be difficult for me to think, speak, and move.
22. The best thing(s) a doctor has ever said to me about migraine is: "I won't give up on you."
23. The hardest thing to accept about having migraine is: that it is unpredictable.
24. Migraine has taught me: to recognize the strength that I DO have. It is teaching me to have more patience, and to trust God more.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: "Be still, and know that I am God" (Psalm 46:10).
    
26. If I could go back to the early days of my diagnosis, I would tell myself: to prepare for things to be beyond difficult, but to never give up hope.
27. The people who support me most are: my husband, my support system (family and friends, both in person and online).
28. The thing I most wish people understood about migraine is: it's a genetic neurological disease for which, there is currently NO cure.
29. Migraine and Headache Awareness Month is important to me because: I feel that we need to speak up/out to raise awareness, increase research, and help correct misinformation.
30. One more thing I’d like to say about life with migraine is: that it's hard, but find yourself a support system and be your own best advocate to getting the care and treatment you need to live the best life possible.

You Are Loved (Don't Give Up)

"You Are Loved (Don't Give Up)" Watch the Josh Groban video below and listen to the lyrics. How does it make you feel? Which lyrics do you find especially inspiring?

https://youtu.be/EGLSk3AVcUU

What a beautiful song. Such powerful words. 

This song immediately brought to mind my relationship with God. He is always there. He is my strength, my comfort, my guiding light.

As I listened further, I thought of relationships I've grown over the years. I'm blessed to have people in my life that will help me:

when my load feels too heavy,
when I feel unheard or misunderstood,
when I get lost in the pain,
when I feel the light in me has been blown out. 

They are there to help lift me back up... to help me find hope. They remind me to look to my faith for grace, mercy, and hope. And, they hold onto hope, when I struggle to hold on myself. Their love, patience, and grace is beautiful and amazing.

I strive to be that kind of person, as well. 

When you feel invisible, unheard, misunderstood... you are not alone. Reach out. You are loved!

You Are Loved (Don't Give Up) by Josh Groban

Don't give up
It's just the weight of the world
When your heart's heavy
I...I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I...I will break it for you

[Chorus]
Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I will be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

[Chorus]

You are loved
Don't give up
It's just the weight of the world
Don't give up
Every one needs to be heard
You are loved

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

My Hope

"YOUR Hope," What do you hope for most in your journey with Headaches or Migraines? Please share with us about what you hope for and why.

What I hope for most in my journey with Migraines is my life hope / goal: 

To faithfully follow God, allowing Him to work in and through me wherever I am and however He desires.

My life doesn't look the way I ever imagined. Chronic pain, especially chronic disabling pain, wasn't part of my life plan. But, life continues on, and I choose to participate in whatever capacity I'm able.

Regarding Migraine, I hope to improve my quality of life by continuing to learn, cope, share, grow. I want to make a difference... 

To help advocate for myself and others.
To help others know that they're not alone.
To help disseminate information about Migraine and other headache disorders.
To help raise awareness, educate others, reduce stigma, and increase funding for research. 

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.

Hope Lies in Dreams

"Hope lies in dreams," Interpret the Quote: Tell us what the quote on the image below means to you.

"Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality." (Jonas Salk)

So, this quote immediately brings another quote to mind: "The future belongs to those who believe in the beauty of their dreams" (Eleanor Roosevelt).

I believe that allowing ourselves to dream and have hope for the future is important. Having lived with a disability now for over 6 years, I've come to find that my hopes and dreams for the future have changed... but, it's okay to change them!

I can envision a world in which Migraine has a cure. I know that it will take a lot of imagination and courage to reach a point of better understanding of the disease, and then to develop a cure. And, I will do my part in helping to realize that dream. I will continue to help educate myself and others about Migraine. I will continue to share my experiences with living / coping with Migraine. I will continue to contribute monetarily to Migraine research. I will pray for the Migraine community, as well as for the Migraine doctors and researchers out there. I will not give up on hope of a better future for Migraineurs.

The Migraine and Headache Awareness Month (MHAM) Blog Challenge is organized by the American Headache and Migraine Association.