Tired of Losing

This month's Blog Carnival topic asked participants to choose their favorite blog carnival post.

Because I am one of those sponsoring the project, I read each and every post.  I find myself daily saying under my breath "WOW", or sometimes giggling.  I tend to think of fellow Migraine and headache bloggers as a part of my adopted family.  They're more than just friends.

Choosing a favorite blog post is about like choosing my favorite child.  How can I do that?!!

So first, I want to encourage everybody to go to the Fighting Headache Disorders Through Awareness blog and catch all of the fabulous links.  Sit back, read and enjoy while you learn a few things... about living with a headache disorder as well as about the people in the community.  Then I would dare you to come up with a favorite post!

So, I'm not going to.  I'm going to tell you the one I had the best time writing myself.... and why.

My choice is "Premonition" and it talks about treatments in the future.

Why is this my favorite? 

I lost a friend to Migraine two days ago.  Coincidentally, it happened when I was busy working creating an education/awareness video we hope to release soon.  In it we use the song by Third Day "I Need a Miracle".

The song tells the story of a man who had given up. He went into the woods to end his life. In the end, he chose to go home instead, and that night they found the miracle he needed.

What if he hadn't waited?  What if something awful had indeed happened that day?

I am sick and tired of losing people to this disease.  I am sick and tired of the stigma.  I am sick and tired of waiting, and playing games, and the derision that is happening within the community at large.

NOW is the time for this to end... not tomorrow.

But we don't have much choice.  We must remain patient.  We must NOT give up the day before our miracle.

There are many ways Migraine kills.  Only one of them is when a patient who has suffered longer than they can bear, chooses to end their life and their pain.  

• Migraine kills when patients have adverse drug reactions to the many things we use to try to prevent and abort our attacks.  
• Migraine kills when it causes stroke.
• Migraine kills when a traffic accident occurs as the result of an attack.
• Migraine kills when medical accidents happen during one of the thousands of treatments we often have to endure.  

We need better treatments that target what is happening in our bodies.

Well, the post tells the rest...

"Pretty Woman" with Migraine

There are many parts to this topic - what you do to look good when you feel like crap and have Migraine.  It's really all about knowing a few things, then planning for them ahead of time.

I once had someone tell me - every single day actually - that I needed to get up and get dressed, all the way to the shoes.  It would get me ready for the day.  I hated it, but she was right. That meant planning the night before what to wear, then lay it out, so it's ready to go first thing.  No thinking, no time needed to plan when I'm tired and cranky.

Getting dressed, for me, is like owning dogs.  I do it because it keeps me functional.  It makes it so that I have no choice but to keep going on even when I feel awful, like tonight.

Okay, I love my dogs, but sometimes they're hard to own when you're sick.  Most of the time they're hard to own when you're sick.

Sometimes I do even feel better once I've gotten dressed.  At least I'm moving.  Sort of.  Even if it takes me all day to get there.

The other half will be important to read and understand....

If you look like crap when you go to the doctor, patients can often be seen as lazy, not trying, not compliant, or even just as losers.  There's already such stigma re: Migraine patients and their level of education and their stress levels, hysterical brains and laziness, this does nothing to help the situation.  Of course you and I know the truth - some days just getting to the bathroom is all I can accomplish.  Forget dressing.  However, I learned a long time ago, if you want to be seen as a potential drug seeker, go to the doctor looking like one.  If you want to be taken seriously, go with that in mind. 

Remember pony tail holders are made for these kinds of situations.  Caps or head/hair bands.  Even a clean bandana can cover up hair that's not been washed in days.  Clean clothes that look normal - no black, gangsta or biker stuff here. I top it off with a leather jacket or black dress jacket because it makes it look like I tried without trying.  Deodorant/anti-perspirant that's not too strong.  And for gosh sake, please try to brush your teeth 30 seconds, or at least gargle so the doctor can take the time needed to examine you. 

Here's what's not necessary...

• curled, perfect hair.
• a bra (unless you're indecent without one)
• socks
• makeup - of any kind
• a purse
• jewelry, of any type
• Shaved legs and pits
• anything stylish.  Just make it clean, and hopefully not clashing.

I have my "Migraine clothes" at the end of my closet so they're easy to get to.  This is about planning for me.  some days my hubs has to dress me, so this assures he gets the right size for my current body weight, etc.  All he has to do is grab the hangers X 2 and help me get in them.  Slide on my slip-on slippers and we can go.  I actually timed it:  It takes 5 seconds for me to put my hair in a pony tail and look like I at least tried.  Thirty seconds if he has to do it.  I can "brush" my teeth with a towel over my finger and avoid the gagging toothbrush, then swish some Biotene so I don't smell like I have dragon-breath.  That's 30 seconds tops.  The Biotene is good for Migraineurs because it has no alcohol, won't dry, has light taste and smell, and acts just like saliva in the mouth, so is good for your mouth, unlike regular mouthwash.  It also contains Xylitol which kills the bacteria in your mouth better than anything else.

A "Pretty Woman" I am NOT.  However, I can appear fairly normal, very quickly if I need. 

It's all about planning.

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Migraine Challenge: "Carousel"

The song "You'll Never Walk Alone" talks about walking through the storms of your life... that you'll never be alone in them.

Living with chronic illness including chronic Migraine and other headaches, autoimmune diseases like lupus and Sjogren's syndrome, and dystonia means I've been thru my share of storms.  These last few months I've even had additional diagnoses to add to my storms - not something I'm fond of sharing or have happening.

My take on the song is that you may be physically alone, but in your heart you know that those who love you are sticking by you no matter what.

I've lost a lot of friends and family over being sick, so this can be difficult to see.  However, I challenge us all to close your eyes and think of the people in your life, or the pets, that mean the most to you.

It's true, they may not physically be walking your walk with you, but don't they love you just the same?  They may have weak moments and cave into frustration with our illness, but don't we get frustrated too?  When we got sick, they were robbed of something too - us.  That's a reason to get angry sometimes.  I think that's not only expected, but that it's okay.

The trick is, getting through these tough times and still staying friends/family after its all been said and done. 

Right now I have a puppy with a hurt leg on my lap.  She laid her face on my shoulder very slowly and softly, almost like she knew I am hurting today too.  Her soft eyes tell me she's in pain and she wants comfort, and it makes me wonder if she realizes the comfort she gives me today, with her warm presence and the mere fact that she needed me today.

We can comfort each other. 

In the end, chronic illness patients walk their walk alone.  That's the reality.  Nobody can enter our bodies with us, but they can be *with* us in other ways.

Here this beautiful song here: http://youtu.be/A4_NdiPSmbs

Let's try not to forget that there are many different ways our loved ones can walk with us without actually putting on our shoes...

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Hobbies and Migraine

The Migraine and Headache Awareness Month Photo Prompt for the day is Hobbies.

I am one of those blessed people whose hobbies always led to some sort of a career.  Art is one of them, although this is the first and only oil painting I have ever attempted, and it's only about half finished! 

The subject is my 27 year old Straight Arabian Stallion, Ibn Naseri.  I've a long way to go getting the details right, but hopefully I won't goof it up too badly when I get around to continuing it.

Truth be told, I am so involved in advocacy for Migraine, autoimmunity and dystonia that I haven't had the time to sit down and work on a painting.  Someday I pray I'll have it done though, hopefully before my beloved *white boy* has left me.  This year he's looking much better and seems much healthier, so there's a chance my dream might come true...

Migraine Awareness Photo Challenge: Pain

Today's prompt is: "Pain"

Now, if I tell you this required no pain medication because my tolerance for pain is so enormously high that being kicked in the face by a horse and surviving with a broken face, eye socket and skull with crushed nerves felt like nothing compared to my Migraines... would that make you stop and think a moment?

This photo was 5 days into the healing process.

#MHAM13  #MHAMPC

The Migraine and Headache Awareness Month Photo Challenge is sponsored by the American Headache and Migraine Association.  For more information, see the activities list here: AHMABlog.com

"Finding Nemo" with Migraine and Chronic Illness

"Just Keep Swimming!"

I was only a teenager when things started to go permanently wrong with my health, so I've been doing this *chronic* thing a long time.

Along the way I've managed to have and raise two great kids, maintained a 30 year marriage, and held a handful of jobs that made it possible for me to put my priorities straight and still contribute to the family income at the same time.  I even built and owned three of my own businesses.  I've spent more hours volunteering than probably anything else... all while sick.

My mom has a saying that is called an "Ellenism" in our house now because I say it at least once a day.  It explains how I "just keep swimming..."  It's all about a question, and an answer.

"How do you eat an elephant?"

Answer: "One bite at a time."

Most of the time I take things one day at a time.  Sometimes I feel worse than others and I have to take things in smaller bites.  Maybe it's getting through this half of the day.  Maybe it's getting through the next hour.  Sometimes, it's just getting through the next minute.  I literally watch the clock as I try to distract myself from the pain that is mind-bending.  Each time the number changes to another minute, is like a victory for this warrior.

When the clock changes, it means two things.  It means that I conquered and I won over whatever challenge I was enduring and fighting that minute, but it also gives me strength that I know if I did it once, I can do it again.

There are no medals in this fight.  There aren't even any ticker tape parades or celebratory parties.  There is usually just me, knowing if I did it once, I can do it again.

I don't really have any other ways to just keep swimming... this has worked for me for decades.  So long as my direction is still forward, it doesn't matter how small those bites are, just so long as I keep taking them.  Eventually the enormous task ahead - which regrettably is sometimes just surviving - will be accomplished.

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page
June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Migraine and "The Hunger Games"

Today's prompt is all about the catch-phrase used throughout the movie:

"May the odds be ever in your favor."

What do you do to be sure you keep all the greatest odds possible in your favor so you don't develop a Migraine attack?  If you're chronic, what do you do to keep the odds in your favor so that you will get through the day despite Migraine?

I do everything most other people do... or do I?

• I watch my triggers.  More than that, I manage them carefully.
• I take my medicine religiously at the same time every day
• I try to remember to eat regularly throughout the day
• I graze on veggies and fruits thru the day
• I have started Botox treatments which seems to be helping slightly.
• I attend medical CME credited conferences so I can learn the latest and the greatest from the best.
• I have an amazing headache specialist
• I keep track of my other health conditions and maintain regular visits to keep as healthy as possible.
• I take at least 1 hr out every afternoon to rest and take a break to spend some time on me so I don't feel left out.
• I maximize my sleep efforts.  
• I keep pets in the house with me which help to force me to stay active even when I'm sick.
• I make sure and let my support system know how much they mean to me.  
• I make my mess my message, by being active as an advocate/educator helping others.
• I keep track of my own medical records on paper, in a notebook
• I schedule my day
• I schedule my life. This means I have a written schedule and plan ahead so if I get sick, someone else can take over seamlessly. Dogs get their meds and fed, hubs has something to cook fast, etc.
• I prepare food ahead. I buy farm fresh from the farmer, then prepare it when I'm feeling good... in huge batches.  Some things can be pre-mixed and need only be shoved in freezer bags so they can be tossed into a crock pot on a bad day.
• I eat clean.
• I keep track of the weather.

The last thing I'd like to mention is surprising to most people, but key to helping me.

• I volunteer.

If you feel there is no purpose to your life; if there is nobody you can help; if there is nothing to make you feel needed in a good way, and appreciated every day of your existence, then your chances for situational depression are much greater.  Even with these things in place depression can be a factor to deal with. Volunteering is something you do on your terms, when you feel up to it.  Yet it involves others and is rewarding beyond words.  For me, volunteering is one of those things I do to help prevent Migraine from ruining my life.

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page




June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com