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).

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).

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).

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).

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).

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).