Saturday, June 30, 2012

Migraine Awareness Month Blogging Challenge #30: End of June, But Not of Awareness

Today is the last day of Migraine Awareness Month. What a journey! I've been introduced to some new people / blogs that I can't wait to continue following. I'm fighting a big one today, so I'll keep this simple (i.e., I'm kinda copy/pasting from my post the beginning of the month).


This year's theme for National Migraine Awareness Month (NMAM) has been "help make migraines visible!" Many of the obstacles facing Migraineurs have to do with myths, misconceptions, and stigma surrounding Migraine and other headache disorders. I think that we made a good start to dispelling some of these things, but we have to keep educating and sharing our stories.

Thank you to Ellen and Teri, who put together the Migraine Awareness Month Blogging Challenge - 30 posts in 30 days - to help make migraines more visible!

The NHF shares some different resources to increase awareness - including a series of NHF hosted chat webinars (you can find out more information and register at this link), which they will continue to host. July's webinars will be from 6:30-7:30pm (CDT), and the topics are:
  • July 10 (Tuesday) - Ask the Pharmacist
  • July 26 (Thursday) - Management of Your Headache in the Emergency Department
Please take a moment to sign the Alliance for Headache Disorders Advocacy petition to urge Congress to hold hearings on the impact of Migraine and other headache disorders - you don't have to personally experience headaches or migraines to help support those of us that do, so please take a moment and sign this important petition.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Friday, June 29, 2012

Migraine Awareness Month Blogging Challenge #29: Chronic Migraine Awareness Day

Today is Chronic Migraine Awareness Day. Apparently, I'm recognizing today with a low-grade Migraine (at least it's not full-blown, though).

According to the International Headache Society, Chronic Migraine is "Migraine headache occurring on 15 or more days per month for more than 3 months in the absence of medication overuse" (ICHD-II).

There are many different acts of kindness that can be done for those living with Chronic Migraine, including:
  • Offer to go to the doctor with a Migraineur and offer to take notes for them.
  • Offer to help with food - prepare and deliver a meal for their family; fix a few frozen meals that can be easily reheated; help with grocery shopping (either go with or offer to pick up a some items for them).
  • Offer to help around the house (laundry, cleaning, help finishing an unfinished project).
  • Offer to watch a Migraineur's child(ren) for a few hours.
  • Offer to have a spontaneous outing on their next good day... whenever that might be (even if it's just a quick outing for sno-cones - mmm, sno-cones).
Many Migraineurs are dealing with feelings of helplessness, and it can be extremely difficult to ask for help. So, it helps to keep offers specific - "Let me know if you need anything" or "Can I do anything to help?" will rarely result in someone reaching out and asking for that help because they're simply overwhelming. Also, please be sincere. If you're not willing to prepare a meal, don't offer to do it - if you offer and don't follow through, think of how the Migraineur feels after allowing him/herself to be vulnerable and accept your offer of help.

Remember, even small gestures of kindness can mean so very much.

Really, I think the things Migraineurs would truly cherish most are things that we ALL need (healthy or disabled, young or old) - companionship / love, comfort, understanding, and support. Here are some ways to show the Migraineur in your life that you care:
  • Be forgiving and understanding when we have to cancel (even last minute) plans - Believe me, we hate to cancel plans more than you hate that we had to cancel - many of us have quite a lot of guilt built up around letting others down.
  • Have at least a basic understanding of what Migraine disease really is - it's NOT "just a headache," it's a neurological disorder that affects every system of the body - and please help us dispel the misunderstandings and stigmatization surrounding Migraine disease.
  • Be mindful of our needs - to avoid bright lighting (for example, when sitting down at a restaurant), scents/smells (including perfume, lotions, candles, air fresheners, etc), noise/crowds (for example, I can't deal with going to a club or concert), food sensitivities (migraine-friendly food / drinks) - I know this is a lot to try to remember, but simply asking if there's anything you can do to help reduce some of our triggers can mean so much (and help us to enjoy themselves more).
  • Keep in touch - a quick email, text message, letter, etc can brighten our day (even if it's just to let us know that you're thinking of us) - we care about what's going on in your life, too.
  • Help us remember that there's always hope and we are loved, despite our disability.

A fellow chronic Migraineur wrote a letter to people without Migraine that I think is very well-written. Please take a few minutes to read it, here. I share her sentiment: "I do not want your pity or even your sympathy. I want you to have even the tiniest grasp that migraine is not a headache... [I] beg for a smidgen of your comprehension" (Kerrie Smyres).


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Thursday, June 28, 2012

Migraine Awareness Month Blogging Challenge #28: Lights, Camera, Action

LOVE & OTHER DRUGS

A movie character that I identify with is Maggie in Love and Other Drugs - I've written about this in Movie: Love & Other Drugs.

"Sometimes the things you want the most don’t happen and what you least expect happens. I don’t know – you meet thousands of people and none of them really touch you. And then you meet that one person and your life is changed, forever" -Jamie Randall (in Love & Other Drugs)

Unfortunately, there's not a very good video of the most moving clip in the movie, but here's the best I could find.

DROP DEAD DIVA

A TV show character that I identify with is Jane in Drop Dead Diva. I started watching this show on Netflix (last year), and quickly fell in love with it. The premise is that an aspiring model (Deb) that is killed in a car crash gets brought back to life as a n intelligent, overweight lawyer (Jane).

Her experience resonates with me because I kinda feel like I'm also in a new / foreign body. My migraines are so frequent and debilitating that I have so many more limitations than I've ever had before, and I'm still trying to learn to respect and live within my new limitations.

A lot of the show is Jane's journey to figuring out who she is now (she's a combination of Deb and Jane). She also has to deal with others' expectations. I definitely relate to her struggle with others' expectations, but I write about that a lot (such as, Expectations and Relationships).

A quote from the show that really hit / touched me was: "It's been nine years. The world that I lived in has moved on without me; and if I want to move on, I guess I just have to let go" - Jane (in Drop Dead Diva)

Here's a clip that includes the show opening and "Saying goodbye to the (old) Jane."


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Wednesday, June 27, 2012

Migraine Awareness Month Blogging Challenge #27: In My Head & Heart

There are several people that inspire me to keep trying and not give up, despite my Migraines.

My Husband - Jeremy has always been a huge support and encouraging partner. He tries his best to understand my Migraines. He goes with me to doctor appointments. He's truly seen me at my worst... and he loves me anyway.

He knows that in my heart, I don't want to give up... and he reminds me of that. He cheers me on, even when the achievement is seemingly minor. He helps me so much (with tasks around the house, etc), but he encourages me to do what I need to so that I can live the best quality life I can with this disease (sometimes that means challenging myself to do something I haven't done in a while). He doesn't make me feel bad for my memory problems, my inability to help more around the house, having to cancel plans at the last minute, and so many other limitations I now have.

He helps me hold onto hope, and I'm so very grateful that he's my life partner.

My Family - My family has always been behind me, supporting and encouraging me. I lived with my parents for a little while following the accident, so they've seen me through some very dark times. I don't really remember much about the months after the accident (I literally had to write things down as they happened, or they'd be gone forever), but I know that I couldn't have made it through without them.

My mom went with me to all of my doctor appointments for at least the first year after the accident, and always asks for updates on how appointments went. My dad is always such a calming presence in my life, and I know that he knows and understands me in ways that many others don't. My sister has also been a so supportive and encouraging, and it means the world to me.

My family is my solid foundation and constant in the midst of life's storms, and I'm so very blessed to have them behind me no matter what.

My Friends - I rarely communicate with most of my friends. But, I do have a friend or two that have taken some steps to try to better understand Migraine and my experience living with it - and I'm so grateful that they have. They don't mind if I need to keep the lights low, keep my sunglasses on, and they show compassion (but, thankfully, not pity). I know that they're busy with their own lives, but I cherish the times I get to chat with them (in person, on the phone, texts, email, snail mail - any way that we can communicate). 

Online support communities
My Online Friends - I've met some dear friends in the online world, most that I probably never would've been blessed to know without the common link of Migraine. They have provided me strength, support, hope, prayers, and friendship. I can always count on them to understand and accept me the way that I am. They've helped me through some of the roughest times; but they're also there to cheer me on, celebrate achievements (no matter how small), and to offer words of kindness and love.

My Stubborn Self - I've always been a persistent and determined person. I won't stop trying to find relief. But, meanwhile, I'm trying to create and maintain a life that includes living within my current limitations. I'll never give up hope - I may have trouble holding on sometimes, but I have a support system that will hold onto hope when it's slipping from me.

My Faith / My God - I put up a wall and was so angry with God for some time after my accident. But, at some point, I came around and have been trying to trust Him more (this isn't to say that I never feel frustrated or angry with God, but it's much less frequently and shorter-lived).

God has provided for me / us in so many different ways. He provided for us financially through times with mounting medical costs and Jeremy being unemployed. He continues to give me the strength to make it through each moment. He blesses me in so many different ways, despite my chronic Migraines.

I don't understand why God brought me to this place of chronic pain. But, I'm trusting Him to work in and through me. I can't say that I'm happy to be a chronic Migraineur, but it's bringing me closer to my God and some of my family... it's made me slow down and live more "in the moment / in the now"... it's helping me to embrace and cherish the good moments, and try hard to let go of the moments that try to consume me... and it's reminding me to be filled with gratitude, even for simple or small blessings.

I believe that sometimes the greatest blessings are born out of brokenness.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Monday, June 25, 2012

Migraine Awareness Month Blogging Challenge #24: Dear God

"God, be my guide, fill me. lead me. mold me.
make me pleasing to Your eyes. hold me.
be with me, always."
A prayer for my life:

To live a life worthy of my calling
"As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the unity of the Spirit through the bond of peace. There is one body and one Spirit, just as you were called to one hope when you were called ; one Lord, one faith, one baptism; one God and Father of all, who is over all and through all and in all" (Ephesians 4:1-6)
To have peace and hope, even in the midst of life's storms
"Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us" (2 Corinthians 1:9-10)
To lay all of my desires and hopes at my Father's feet
“Father, if you are willing, take this cup from me; yet not my will, but yours be done” (Luke 22:42)
To be more fully present in the moments of life
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matthew 6:34)
"This is the day the Lord has made; We will rejoice and be glad in it" (Psalm 118:24 NKJV)
To know and trust God more with my life
"I want to know you
I want to hear your voice
I want to know you more
I want to touch you
I want to see your face
I want to know you more" (Lyrics of Hillsong's song, I Want To Know You More)
This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Saturday, June 23, 2012

Migraine Awareness Month Blogging Challenge #23: Mild Head Trauma

I just read an article that was very interesting and applicable to me - Headaches Worse With Mild Head Trauma Than More Severe Trauma: Researchers say even seemingly mild head injury should be taken seriously.

The study found that "those with mild injury were more likely to report new or worse headaches than those with moderate to severe injury."

The study is to be presented this week at an American Headache Society meeting - the data and conclusions of this study should be viewed as preliminary until they're published in a peer-reviewed journal.

This really struck a chord with me because my auto accident didn't result in a "severe" head injury. And, yet, here we are approaching 4 years since my accident, and I'm still trying to get my chronic, debilitating Migraines under some kind of control.

Please take all brain trauma very seriously, regardless of whether it seems mild, moderate, or severe.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Friday, June 22, 2012

Migraine Awareness Month Blogging Challenge #22 (Part 2): Masking the Pain

My little sister was married to her handsome prince this past weekend. I'm so happy for them! It's been a looong time coming, and I'm so glad they're now united in marriage... and the wedding was perfect and beautiful!

My migraines didn't seem as interested in helping make their day special and perfect, though. In fact, last Thursday, a migraine started... it still hasn't subsided. I was able to use my pain meds to get through the rehearsal and dinner, and their wedding day... but that wasn't without A LOT of inner turmoil.

* I'm going to include a few pictures. I apologize for the poor quality - I have to see if I can get some better quality copies, but I couldn't wait to give a sneak peak! *

Rehearsal

I wasn't feeling well on Thursday (I struggled all day, but we had a nice evening - except that perfume and scented lotion helped push me further over the edge... didn't really know until it was too late), but I completely crashed on Friday.

I ended up taking my pain meds (I didn't want to try a new medicine, so I used meds that I knew how I would react to - knowing the side effects I would face). I let the best man know that I might be off-balanced and that I might need to lean on him for support (luckily, he was a pretty solid guy).

The Bride & Groom at the Rehearsal Dinner
I let my immediate family know that I wasn't doing well at the rehearsal. I had some family members tell me (after I mentioned that I wasn't doing well) that I have a very good mask. I pushed as much as I could. I'm sure I wasn't very pleasant to be around. Between the heat, humidity, lights, sounds, group of people, nausea, irritability, camera flashing, etc, I just couldn't take anymore, so Jeremy and I left the rehearsal dinner early (hoping that I could sleep off the migraine, so my head would be better on the wedding day).

Wedding Day

I knew when I woke up that I wasn't going to make it through the day without taking anything. So, I took my pain meds, again, on Saturday.

I've written before about wearing a mask to hide the pain - see this post, The Girl Behind the Mask. But, it was a little different this morning. Here's something I wrote this in the morning, before the wedding: "As I put my makeup on this morning, I can't help but feel like an actress preparing to go on stage for a performance - 'the show must go on.' I feel fake or something. But, it's Jenn's big day, and I want to be there for her... even if part of me is missing."

It wasn't easy dealing with the pain plus side effects, but I'm glad that I was able to attend. I pushed really hard, and I was told that I had a very good mask on - that others couldn't tell that I was hurting so badly, and that I looked absolutely beautiful. I guess working on masking my pain came in handy the other day...

The Gorgeous Bride
My sister's wedding was absolutely beautiful!!! I shortened my maid of honor toast (I'm going to write out what I originally wanted to say, and give it to them with their wedding gift) - I told my sister before the reception, so she'd know. I started tearing up during the toast, but it was mostly due to the fact that I was hurting so badly just trying to get the toast done. I have a lot of love and emotion for my sister and her new husband, but it was hard for me to focus on much else besides the pain - I just hope they know how much they mean to me.

After dinner, toasts, and cake, I had to leave the reception area. The music was sooo loud, and there were flashing lights in the reception room. So, I didn't really get to spend much time visiting or dancing with anyone. My husband and I left before they did a mock exit (then they came back in to dance the night away) with sparklers - I just don't think I could've handled the flickering lights of the sparklers.
Jeremy & Jamie
I know that my family understands... they reassured me a lot. I took several time-outs for myself, but I really just needed to try to sleep it off. I'm so very happy that the day was perfect for my sister and her new husband.

Based on the pictures the photographer took, everyone seemed to have such a great time. And, I'm so glad that they did. I wish I could've been more active in the festivities, but they're married and had a great time... that's what matters. :) They're in Costa Rica for their honeymoon, this week. I'm staying in my apartment trying to recover (and I can't take meds, since I took them Friday and Saturday... so, it's been a long, tough week).
Jeremy, Jamie, Jennie, Shawn
This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #22 (Part 1): The Game Changer

There are many examples of times that my plans have changed due to an unexpected Migraine!!!

I've missed friends' weddings, family get-togethers, church services (I'm ashamed to say that I've only been a couple times this year), and various other events (big and small). I often have to change / adjust plans, even to do "normal" activities like going to the grocery store.

Jeremy and I have had to get used to the "winging it" that comes along with a chronic illness. I never know how I'm going to feel or how long I'm going to last. We both hate having to change / cancel plans with others, and / or make sure that other people understand that our plans could change at the last minute (they're pretty volatile). I think it's a guilty sort of feeling, though we may not label it or think of it as such. Even though we're getting used to this, we really hate when it starts affecting other people.

Whenever I have an unexpected Migraine-free experience (i.e., having a manageable headache), I try to take advantage of it, without overdoing it. I want to get all of the things done that I haven't been able to do because of bad Migraines. It takes a lot of reminders from myself and my husband to not overdo it, and to remember to take frequent breaks and pace myself. But, I try to cherish every moment of these scarce low-pain days!

"Life is about not knowing, having to change,
taking the moment and making the best of it,
without knowing what's going to happen next."

- Gilda Radner
This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Thursday, June 21, 2012

Migraine Awareness Month Blogging Challenge #21: Shaking in My Boots

I've written about chronic pain and fear before. A post that specifically comes to mind is: Fear in the Life of a Chronic Migraineur.

I fear much more than I should, and I'm working on it. But, living with chronic, debilitating pain can lead to an influx of questions and fears. I fear: letting others down, missing important events, when the next big migraine will come, if the chronic pain will ever cease, etc.

With the build-up to my sister's wedding (which was this past weekend), I had to deal with a lot of fear. Would everything get done in time? Would I be able to attend all of the events leading up to and including the wedding? Would I be able to put a smile on my face, even if the pain was taking over everything inside of me? Would my sister get the amazing wedding day that she deserves? Would my crash come sooner or later... I knew it was coming because I was pushing so much / hard, but I hoped that it would come after the wedding festivities?

As I helped plan the wedding, I tried to take things in baby steps - working on things as far in advance as possible. I started resting and trying to save my energy, several weeks prior to the wedding. I was doing pretty well with things... but then things came crashing down.

Part of it was the growing stress of the wedding being in a month... two weeks... one week... a few days... Then, there was the rise in temperature and continuously high humidity of mid-June in Texas. I'm sure there were a whole grouping of things that stacked on top of each other to cause the "perfect storm," and my body just crashed (a couple days earlier than I had hoped).

I tried to take things easy. I tried to take breaks and rest. All of this both before and during the wedding activities (i.e., days leading up to and including the wedding day).

I had saved my allotted two migraine med days for the end of the week, and thank goodness I did - I ended up having to take them for the rehearsal / dinner and the wedding day festivities. I went to the rehearsal and part of the rehearsal dinner (my husband and I left early, so that I could try to get over my migraine before the wedding day). I woke up on my sister's wedding day with the same horrible pain that I'd had the day before, so I took my meds and started getting ready - determined to be there for my sister. I'm so grateful that I was able to attend the wedding, even though I was in a lot of pain and highly medicated.

Dealing with fear as a chronic Migraineur can be very challenging. We want to be there for special events, but it's difficult, even when we have an understanding family. I'm so glad that there was an amazing photographer for the wedding day! I'll be able to see some of what I wasn't able to participate in... and I'll see how happy my sister and her new husband are with each other.

Maintaining joy in spite of pain is true strength.
Don't let the pain define you.
 
I don't completely agree with the above quote in the image. I think the part about "pretending" should be taken out completely. I wasn't pretending to be happy this past weekend. I'm truly happy for my sister and new brother-in-law. Between the pain and the meds, I wasn't able to show it outwardly very well (the meds make it difficult for me to show any emotion). But, I did my best. I'm sooo very happy for the happy couple!!!

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Tuesday, June 19, 2012

Migraine Awareness Month Blogging Challenge #19: The Match Game

Though there are 37 million Migraineurs, there are only 290 headache specialists! No wonder there are so many people that suffer from Migraine or other headache disorders that never get a diagnosis, or are misdiagnosed.

But, even with that few headache specialists, you can't just throw a doctor and a patient together and expect a great match. As with any relationship, the relationship between a health care professional and a patient is more complex than any list can capture. But, there are some characteristics that you can look for, when setting out to find your perfect match.

That being said, the perfect doctor to treat my Migraines would be (in no specific order):
- A excellent listener
- Competent / medical expertise (well-versed in Migraine and other headache disorders) - able to admit when they don't know something, and resourceful enough to find the right answer for their patient
- Observant
- Open to all kinds of treatment
- A great problem-solver
- Confident (but not hubris)
- Empathetic - understand the patient's needs as a whole person
- Humane - caring, compassionate, and kind
- Forthright - straightforward and honest
- Respectful - take the patient's input seriously, work with the patient, ethical in practice
- Thorough - conscientious and persistent
- Educated - willing to continually learn and stay up-to-date on current research in the field; willing to help provide the patient with the tools to help him/herself - be a partner in the patient's care
- Possess fortitude - an unshakable sense of hope; mental and emotional strength in facing difficulty and adversity courageously; resolute endurance
I actually am blessed enough to have a doctor that possesses many (perhaps all?) of these characteristics. He's running out of treatments to try, but he's always open to anything that I bring to him, and he's willing to try new and different things to try to improve my quality of life with chronic Migraines. I truly hope that he and I can continue our partnership, and find something that helps me to live the best life possible (even if the chronic Migraines continue).

This post was written as part of the Migraine Awareness Month Blogging Challenege (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Monday, June 18, 2012

Migraine Awareness Month Blogging Challenge #18: The Price is Right

In 2011, the National Institute of Health (NIH) only designated 0.07% of NIH funding to headache disorders! The great reach of Migraine disease and other headache disorders (there are over 100!) isn't being acknowledged and dealt with. Headache and Migraine are an enormous drain on society - costing us more money than epilepsy, asthma, and ovarian cancer combined. Yet, funding doesn't accurately reflect this.

If money were no issue, there are a lot of things I would do for the Migraine community - I'd make sure that everyone was able to get the medical treatment they deserve, I'd ensure that doctors receive more Migraine and headache centered training in school, and I'd increase awareness of Migraine and headache disorders.

But, if I had to choose ONE thing, it would probably be to expand research opportunities to learn more about Migraine and other headache disorders. Research into the epidemiology, pathophysiology, and treatment of Migraine is greatly needed to help dispel all of the myths, misconceptions, and stigma that surround Migraine. We know so little about what's happening in the brain during a Migraine attack, which leaves diagnosis and treatment greatly lacking.

And, since money is not issue, I'd help increase funds for Teri Robert's idea to create an endowment fund, which would permanently fund research for Migraine.

Image by Kate Chapell
I believe that funding research will give Migraineurs some much-needed HOPE. And, that is what will help us keep taking the next step, and the next step...

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Sunday, June 17, 2012

Migraine Awareness Month Blogging Challenge #17: Father Knows Best

First, Happy Father's Day to all the fathers out there.

I have the BEST Dad in the world! We've always had a very strong connection. We tend to understand what the other is thinking and/or experiencing in an unexplainable way. Hey always seems to know just the right thing to say, even if silence is what is needed.

Dear Dad,

Thank you so much for always being there for me. While you don't have Migraines, you seem to understand some of the pain because you had an accident several years ago, too. I hate that either of us is in pain, and I wish I knew a way to get rid of it.

My migraines limit me in so many different ways. I really appreciate your support and encouragement to take things one step at a time, to break things down into small baby steps, and to celebrate even the smallest achievements.

I love you so very much, Daddy!

Love,
Jamie


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Saturday, June 16, 2012

Migraine Awareness Month Blogging Challenge #16: Migraine Genes (Migraine Without Aura)

The other day, I wrote about new research regarding a possible genetic link explaining the prevalence of Migraine in Women - Migraine Genes (Prevalence in Women).

More new research offers us valuable information about the genetic underpinnings of Migraine attacks, specifically Migraine without aura (which is the most common variety of Migraine).

Please take a few minutes to take a look at these two articles that discuss this important new research - Migraine Genes: X Marks the Spot - and - New hope for migraine sufferers. The researchers identified four genes (and additional genetic variations - blood vessels and blood flow as key parts of Migraine attacks) related to Migraine disease, thus reinforcing the notion that there is a strong genetic component of Migraine.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Friday, June 15, 2012

Migraine Awareness Month Blogging Challenge #15: Migraine Genes (Prevalence in Women)

New research has identified a specific region on the X chromosome as playing a role in Migraine. Please take a few minutes to take a look at these two articles that discuss this important new research - Migraine Genes: X Marks the Spot - and - New hope for migraine sufferers.

Here is an excerpt from the first article that helps outline the significance of this type of research:
"Finding these genetic links to Migraine is especially important because we don’t entirely understand the pathophysiology of Migraine and there have been precious few studies to help us figure it out. Learning more about how and why Migraine attacks occur will help researchers find or design specially targeted treatments for those of us who suffer Migraine. It may also be the smoking gun we need to finally turn Migraine disease into something we can diagnose by testing for something instead of simply excluding everything else we can think of to reach a diagnosis. This is called a diagnosis of exclusion and is currently the only way physicians have to determine if a patient truly suffers from Migraine disease" (Migraine Genes: X Marks the Spot).
If you remember from high school biology, all females have two X chromosomes, while males have an X and a Y chromosome. "'These results provide more support for the role of the X chromosome in migraine and may explain why so many more females suffer from the disorder,' said Professor Griffiths" (New hope for migraine sufferers).

This research is a very important step in moving forward in Migraine diagnosis and treatment - "the research provides compelling evidence for a new migraine susceptibility gene involved in migraine. The study also indicated that there may be more than one X chromosomal gene involved and implicated a gene involved in iron regulation in the brain" (New hope for migraine sufferers).


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Thursday, June 14, 2012

Migraine Awareness Month Blogging Challenge #14: Live Long, and Prosper

I often close with "Blessings" to express my well-wishes for my fellow Migraineurs. I want them to know that I care, they'll be on my mind and in my heart, to encourage them to remember and be grateful for their blessings (even in difficult times), and to know that I truly wish them well.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Tuesday, June 12, 2012

Migraine Awareness Month Blogging Challenge #12: Self-Care

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Maria, at My Life Works Today!, is hosting this edition of the PFAM blog carnival. The topic is: "Self-care is..."

Self-care is...
eating-well, time-alone, cook, massage, letters, blog, write, music, journal, scrapbook, relax, walk, courage, persistent, adaptable, flexible, understanding, empathy, open, forgiving, ask, help, accepting, research, strength, peace, hope, prayer, faith, loving, friends, family, say-"no", nurture, cherish, gratitude, support, soul, embrace, collaborate, sharing, listening
There are several different categories here, but there's one that really stands out:
Relationships - with God, self, family, friends
Relationships with others can be a very important part of self-care, but not to the detriment of your relationship with God and with yourself. I know that I have trouble remembering this sometimes, but it's something I'm working on because it's so crucial to my self-care.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Monday, June 11, 2012

Migraine Awareness Month Blogging Challenge #11: Say What?! (Ellen)

Ellen, at Migraine Interrupted, shares something that was said to her by a breast cancer survivor that I think is very, very powerful (and definitely worth the read). Here is her post - Migraine Awareness Month #11: "Say What?" Here's a sneak peak of her article / post:
"Cancer was a breeze compared to living with Migraine." 
Here's what her explanation was...
Everybody understands cancer. There are tests for it. You can see it on an x-ray. Diagnosis is fairly straightforward as is its treatment. There are commercials for it, free testing for it, and support groups for it. 
Because everyone talks about cancer, everyone understands what your body goes through during cancer treatment. They support you. They rally around you. They bring you casseroles to eat for dinner, clean your house, run errands for you, drive you to church and doctor appointments. They help you fight.
When you have cancer, everyone rallies around your family. They are supportive asking what they can do to help, and offering shoulders of understanding for tears when they are overflowing. 
Medications are constantly being sought for cancer. Research is ongoing and enthusiastically paid for by the public and by society.
Once you say the words "I have cancer" nobody doubts you or your experience. The only stigma re: cancer is when patients don't appreciate the pity party others often want to throw them.
Cancer has an end. When this cancer patient went through treatment, she knew about how long it was going to take. She had a light at the end of the tunnel and something to look forward to and strive for.
There was an end. There are *cures*.
Migraine is not like that. (Migraine Awareness Month #11: "Say What?")
This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #11: Say What?!

It's difficult to choose the most ridiculous thing that someone's ever said to me about Migraines.

I know that the way I respond to the question, "How are you?" isn't the socially acceptable "fine," "good / great," or "okay." For a long time, I did respond this way... but, I reached the point where I just couldn't do it anymore. I still don't just spill everything about how badly I've been doing, but I felt like I wasn't being true to myself by saying that things were all good. So, I may get blank stares, since my comments are outside the social norm.

My interactions with people vary from short conversations with new people to longer conversations with people I've known for years. Regardless of the communication between us (sometimes it's just a short statement) about the fact that I've been dealing with chronic Migraines for several years, people still feel that it's appropriate to ask:

  • "Have you tried Excedrin Migraine?" - Okay, really?! Yes, I've tried this over-the-counter medicine... along with many, many other medications over the years.
  • "They still don't know what's causing these chronic Migraines?" - I don't really understand why this question keeps coming up. Migraine is a genetic neurological disease. The chronic, debilitating nature of my Migraines was triggered by an auto accident in 2008. Other than that, I don't know what kind of answer people are looking for here.
  • "But, you look so good..." - Well, that's because Migraine is an invisible illness. I "look so good" because I try very hard to appear normal and enjoy the time that I do spend out with others (no matter how rarely that may be). What you see is a mask. It may not be on very well, at least not to those that truly know me well; but it's a coping mechanism that I use. If I looked as bad as I feel, I'd be a monster, scaring everyone in my path.
  • "Do you really have a headache every day?" - Yes, I really have a headache every day. Even if I tell you that I've been doing alright, that doesn't mean that I've been pain-free. My "normal" is very different than before the accident, and very different than other people's (many cannot even begin to understand). My pain ranges from moderate to excruciating.
I know people mean well, but their comments can often be hurtful and/or belittling. It's hard to remember that we're all human, and we can't blame each other for acting as such. So, I do my best to deal with it in a respectful manner and move past it.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Sunday, June 10, 2012

Migraine Awareness Month Blogging Challenge #10: Taking An Important Step

My husband and I were able to attend our sister-in-law's ordination this past week. We drove down to Waco, Texas to attend the service and celebrate. We're so proud of her! She and her husband (Jeremy's brother) are now both ordained, and will be starting at a new church as head pastors this next week. We're so glad we were able to be there for such an important event.

I struggled through much of the church service, due to the shrill voice of an opera soprano singing and the volume of the organ. My dad had recommended that I take earplugs, so (luckily) I threw some into my purse. I put one of the neon pink/yellow earplugs into one of my ears (hoping it wouldn't be too obvious to others), and plugged my other ear (as needed). I probably should've put both earplugs in, but even wearing the one (in public) was a huge step for me.

I struggled with the ride back home the following day; but I was able to enjoy dinner with a long-lost friend, the ordination service, and visiting with family. And, I made an important step in caring for myself... even though it required wearing neon earplugs in public.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Saturday, June 9, 2012

Migraine Awareness Month Blogging Challenge #9: Day Dream Believer

Hmmm... a day without Migraine to hold me back - what to do, what to do... Actually, what not to do?!

A day without Migraine holding me in its grasp is nearly impossible to even imagine. But, after getting over the initial shock of waking up well-rested and with no pain, I would be ecstatic and do so many things that I've faced with limitations over the past few years.

Here are some of the things I'd love to do on my pain-free day:

Go for a walk outside, without sunglasses - without worry about the sun, heat, or exercise.

Drive and go shopping by myself - without worry about the sun and other stimuli driving involves, the fluorescent lights, other people's perfumes, getting exhausted within moments of leaving my home, or getting stranded somewhere because my head started hurting and I couldn't drive myself home.

Chew gum (specifically, cinnamon gum) - without worry about the chewing or smell worsening my head.

Play with my nieces and nephew - without worry about their high energy, loud toys, or piercing shrieks.

Spend time with my husband - without worry of him having to take care of me or that even the slightest touch will be painful.

Go to a concert (with my sister or Jeremy) - without worry about the lights, smells, loud music, crowds, etc. triggering a Migraine. I'd love to go to a Christian concert like the one my sister and I went to the summer before my accident - it was all-day, outside, and the bands included Skillet, Jeremy Camp, MercyMe, and Pillar - so amazing! I'd also love to take Jeremy to see Blue Man Group - I saw them in concert with my brother about a year before my accident - it was great!

Go horseback riding - without worry about being outside in the heat and sun, or dealing with the rhythm of trotting or loping.

Call and set up a gathering of my closest friends and family. We'd have dinner and game night at my immaculate apartment. I would prepare all kinds of delicious food and drinks, especially ones that I've had to limit because of my Migraines. We'd spend the entire evening eating, visiting, playing games, and laughing until it hurts - all of this without worry of being overwhelmed by too much stimuli, or of a Migraine being triggered by food / drink.

Scream, laugh, cry - without worry that any of these would trigger or worsen a Migraine.

My day without Migraine holding me back would be surprising, productive, enjoyable, and full of laughter.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Friday, June 8, 2012

Migraine Awareness Month Blogging Challenge #8: Let There Be Light

Oh lights! I have to say that I've never been a huge fan of light, especially of flashing lights and the bright sun. But, since my migraines have become chronic, it's become more than just a dislike. Light sensitivity (i.e., photophobia) is a HUGE problem for me!

Our apartment is our "cave" - we have black-out curtains on all of the windows (and even then, it's sometimes still too bright for me). We don't keep many lights on either, and only use incandescent bulbs. I don't do very well with fluorescent lights, including the compact fluorescent lights (CFLs) that are being pushed for home-use because they use less energy than incandescent bulbs.

I limit my time outside, especially when my head is really bad or on edge of becoming really bad. I still try to get out some, but I do much better on cloudy days (with my sunglasses still on).

I try to choose the darkest booth in the restaurant to sit it (quiet, dark, and away from the crowd) - I then position myself to have as little view of windows, overhead lighting, etc. I can't stand overhead lights with fans... it gives a horrible strobe-like effect that makes me ultra-nauseous and worsens my head pain.

Sometimes, I keep my sunglasses on inside bright houses/apartments, restaurants, stores, etc... I don't really like to do it, but sometimes it can help (even if only a little).

I struggle with all the lights at night, when we're driving back home from somewhere. Even with my sunglasses, the headlights and streetlights just wreak havoc on my eyes and head.

If someone takes a picture that uses a flash, I'm doomed, and it's especially bad at night. The flash affects my vision, sometimes to the point that I can't see anything else, for at least 5-10 minutes (and usually takes much longer to completely go away).

Lighting has become a major struggle for me because I'm so very sensitive to it. I try my best to deal with it without it affecting others, but that can be difficult.

Here's a great resource for ideas to deal with photophobia:  Two dozen tips for light sensitive Migraineurs.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Thursday, June 7, 2012

Migraine Awareness Month Blogging Challenge #7: List Topper

There are SOOO many myths and misconceptions about Migraine. But, I think the biggest and most common one is the idea that "Migraine is just a headache."

Migraine is a genetic, neurological disease. It affects a person in every aspect of his/her life. In fact, some migraines (such as, abdominal migraines), don't even have the head pain that most people identify Migraine with. There are four different phases:  prodrome, aura, headache, postdrome. Some of the most common Migraine symptoms are:  throbbing pain, light sensitivity, sound sensitivity, nausea, vision changes, vomiting, aura, neck pain, weakness, dizziness, sensitivity of smell. Migraine attacks last for at least four hours, and may last for days (or longer).

Migraine disease is much more complex than most people know or understand. I try to help minimize the myths and misunderstanding, by trying to keep myself educated and open to sharing with others what Migraine disease truly is. Hopefully this will bring about a better understanding of the severity of Migraine and other headache disorders... leading to increased interest, research, and new treatments.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Wednesday, June 6, 2012

Migraine Awareness Month Blogging Challenge #6: Name That Tune! (Skyscraper)

This is my theme song for Migraine disease.

Skyscraper by Demi Lovato
I absolutely love this song! Both the song and video are very powerful. I think the message is great for everyone that is in a dark place in their life. There is still hope, and you can battle through and rise higher than ever... "like a skyscraper."
You can take everything I have / You can break everything I am / Like I'm made of glass / Like I'm made of paper / Go on and try to tear me down / I will be rising from the ground / Like a skyscraper / Like a skyscraper
In the video, she's barefoot, making her way through a barren desert. I think the imagery is right on. In the midst of dark times, it can often feel like we're alone... trying to make our way through a barren land. But, we can make our way through it, and rise to new heights.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Tuesday, June 5, 2012

Migraine Awareness Month Blogging Challenge #5: Do That To Me One More Time

A comfort measure that I find helps me during a Migraine attack, enough that I go back to it again and again. Well, I like to be prepared... but, my brain doesn't always work very well - especially when I'm getting or have a migraine - and my meds tend to make my brain and body slow down. So, my husband recommended that I store a checklist of things to do before I take my migraine/pain meds. I now have a list that I can go through, so I can make sure to have everything set before I take my meds - that way, I can take them and lay down on the couch to rest.

My list includes things as (seemingly) simple as deciding whether or not to take my migraine meds (this includes checking my migraine diary/journal to make sure that I haven't already maxed out on my meds for the week), and to eat before taking my meds (I've made the mistake before of not doing this, and the rough side effects of the meds kicked in hard and fast - it's something I have to be very conscious of, especially since I experience a lot of nausea with my migraines, and it's harder than it seems to eat even just a little bit).

I then have a list of things to gather / do just before (or immediately after) taking my meds:
  • Cell phone - per an agreement with my husband, I'm to keep my phone with me at all times (I've needed help before and not had my phone with me)
  • Pillows / blankets - to make the sofa as comfortable as possible, since I'll be there for the rest of the day
  • Water & snacks - so I can make sure to stay hydrated and keep some food in my belly, even if it's small snacks throughout the day
  • Meds - daily and as-needed (so everything is handy)
  • Paper & pen for notes - to keep track of when I take my meds (so I don't take it too often or take too many), and I can also record random things that come to mind 
  • Ice pack and/or heat pad - I don't actually do either of these all that often because I haven't found a lot of relief with either one
  • Trash can - in case I can't make it to the bathroom to vomit (meds + migraines sometimes cause this)
  • Kleenex - I have increased nasal issues with my migraines
  • Socks - to keep my feet warm
  • Mouthguard - if I end up napping, I need this in my mouth or I'll end up waking up with even more pain
  • Chapstick - to keep my lips from getting too chapped, since my meds cause severe dry mouth
  • Blood pressure machine - my meds are narcotics, so they often lower my already low BP, so I try to monitor it to make sure it doesn't get dangerously low
  • Neuro-stimulator programmer - in case I need to change or turn off my stimulator
  • Air purifier - this helps with my nasal issues, as well as my frequent coughing
  • Remote control - for obvious reasons
  • Then - go to the restroom, take meds, and get as comfortable as possible on the sofa (in darkness, but TV on quietly)
By having this list and making sure that I get / do all of these things before taking my meds, I feel more comfortable that I have what I need to make it through the day. I think it gives my husband some comfort, too - he checks on me / I keep him updated via text throughout the day, so he knows how I'm feeling and if he needs to come home early to take care of me. But, I feel more able to get through his working hours, by having all of these things ready and on-hand / within reach.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Monday, June 4, 2012

Migraine Awareness Month Blogging Challenge #4: June Is Bustin' Out All Over!

The best tips I have to offer others for having some summer fun despite Migraines are:

  • Wear dark sunglasses and a hat
  • Stay hydrated - water, water, water
  • Keep snacks on-hand - keep your blood sugar level by snacking throughout the day
  • Stay in the shade as much as possible (and/or spend time in air conditioning)
  • Know your limits and listen to your body - if you start feeling dizzy and/or pain increases, take these signs seriously and immediately take action (remove self from situation, drink water, eat a snack, sit or lie down, etc)
  • Pace yourself and plan rest breaks
  • Always have your medication with you (for pain relief, anti-nausea, etc)
  • Be mindful of the fragrance found in many sunscreen products
  • Be careful not to get overheated, as this can worsen your migraine pain
  • Have a "wing man" that knows about your migraines and can help make sure you drink enough water and will help you get out of a situation that has become "too much" for you
  • Remember that you can enjoy time with friends and family, if you plan ahead and arm yourself with some needed items

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).
Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.