Sunday, July 21, 2013

Why I Bought a Wetsuit for my Health - the Saga

UV rays are the enemy of lupus, Sjogren's and yep, even Migraine patients. So what does a person do when going to the land of the midnight sun for a cruise vacation? Cover up.

Really cover up.

One of the things I miss the most is swimming. I swam competitively from the age of seven until I was 17. I was actually pretty good too :) I own an in-ground swimming pool we haven't even opened up for the year since around 2005. I look outdoors at the diving board and slide and yearn for the days when we would swim as a family nearly every night, friends and neighbors right along with us.

For this trip, I decided I was going swimming, no matter the cost. Well, so long as I could do it without causing an autoimmune flare. So, I bought a wetsuit.

I began looking right after Christmas.  After several weeks of looking, I had an idea what I thought I needed - a triathlon suit. These suits are made of thin material in varying thicknesses depending where the suit is on your body. The thicker the suit, the warmer the suit. To make it flexible so you can actually move those arms to swim and expand your chest to breathe, there are panels that have very thin material. The suits cover you from neck to ankles and wrists - well most of them do anyway.

Because I needed something to keep my core warm (I do NOT hold my body temps well and suffer fairly serious Raynaud's) and to keep 100% of the UV light out, I chose the full body version. Coated with a rubber-type coating, it was the only thing I could find that would completely protect me from the sun and fluorescent lights sure to be present on the boat.

Despite the suit, my head, neck, hands and feet will be exposed to whatever light is present. This will likely limit the hours I can swim to late at night when the sun is at its lowest. I'm okay with that. Maybe that will keep me from scaring the kids sure to also be present on the boat, lol.

To cover my head, I've decided on a do-rag. Purple of course :) I can't stand the feeling of a hat on my head because the allodynia from the 24/7 Migraines makes me so sensitive that washing my hair hurts. I do have a cap I'll be bringing just in case there is a certain amount of time I can stand wearing it, but will save it for our excursions - whatever those will end up being.

Sunscreen is a must, but for a person who is allergic to most sunscreens, this is a challenge. I have used a particular brand in the past, but it is not waterproof. The only sure way to keep the sun from damaging my fragile cells and triggering a mass immune response, is to be covered. This means zinc oxide. I have the option of gloves and socks too, but I'm going to try to avoid using them if I can.

Add my bug-eyed sunglasses, and I am sure to be quite a site for people to stare at. On one hand I don't know these people, and it really doesn't bother me. On the other hand, I also know that it will bother me.

Each time I have to make a concession to do something most people consider normal... each time I see a family member or friend roll their eyes at me... each time I look in the mirror... I realize that I really am sick and it is harder to *not feel* the differences. Oh, and those eyes that look at me when I have to be dressed in a get-up like this. Ugh.

Once I figured out the type of wetsuit I needed, the search was on for the exact make and model. Who knew there were hundreds of these things out there to choose from - and each of them different!

I wanted the expertise of professionals, which I got. I wanted someone to just guide me and tell me "Buy this one, it's the right one for you"  but didn't get that until May.

Great! Now I finally know which one to get and I go to order it, only to find they have none in my size. I pray that the backorders will come through and I'll be able to get my perfect wetsuit (which also happens to have purple accents!)

No matter where I looked and how long I waited, I had no luck with the suit of my dreams. So I began the search all over again.

Eventually I found a pro that told me he knew just what I needed. When we looked at it, it too was sold out.

So he showed me another.  It wasn't sold out, but was an additional $150 more than I'd allotted to spend and it was a thinner suit.

When I placed my order, it too was sold out.

What the heck?!

I didn't have time to Migraine, get ready for a trip AND start over from scratch for a third time. So I began looking very deep for the last suit and was amazed to finally find one.

Once again, I placed my order. I emailed the company and thought they answered none of my other questions, they were in California, so I hoped ovenight shipping would work.  I wrote them again and told them so long as I had it by Saturday I thought I'd be okay, as that would give me sufficient time to return it for another size if needed.

Friday at about 4:15pm I receive a call telling me they goofed and didn't have my size. So, they wanted to upgrade me to a thinner, better suit.

But I don't want thinner, I want thicker!

I tried to look it up online, and found virtually nothing, probably because it's a newer model.

Faced with an impossible Migraine and an impossible decision that needed to be made within the hour, I agreed to the upgrade and called her back. Great! They can still get it to me by Saturday because I've paid for overnight shipping.

A few minutes later, another phone call. *Oops* they can't get it to me overnight because we don't have anyone to deliver overnight packages.

Are you kidding? Sadly, no.

I asked them to pro-rate my shipping back to 3 day since it would be Monday before it arrived, but they couldn't.

I wanted to pull my hair out and vomit all over the phone just for good measure. This just shouldn't be so blaming hard.

"Yes, please send me the suit, just so long as it arrives by Monday. That won't give me any time to get another size if this is wrong or won't work for me, and my trip will be ruined, but oh well."

So, on Monday my wetsuit is finally to arrive. It's my third choice, cost me an additional $150, isn't but half as warm as the original, but at least it's getting here!

Stay tuned for more of the wetsuit saga, lol.

Sunday, July 7, 2013

Migraine and Chronic Illness: Preparing for the Vacation of a Lifetime

When I was about 5 years old, my father went to Alaska. When he came back, he gave me a little stuffed blonde seal pup and promised that someday he wanted to take us all there to experience some of what he got to see on his trip.

It's my 30th anniversary, and my parents' 50th anniversary, and we're going on a cruise to Alaska. Finally!

When I say "we" I mean my parents, my hubs and both our kids with their new spouses, and my brother and his family (which includes 3 kids under 8 - one autistic and mentally challenged). To make the trip easier on my brother, my parents chose a cruise specifically for families of autistic kids.

Our situation is unique, and this brings forth some unique things to have to deal with in the planning and execution of such a trip.

  • I am putting together a current list of my medical history - medications, surgical and accident history, allergies, medication sensitivities, physician information etc. I have some strange and complex issues going on and it's vital that I have this information with me at all times in case something goes wrong.

  • I am extremely light sensitive. My Migraines make living without incandescent lighting, or going out doors without my special sunglasses, miserable. We're going to be there during the *midnight sun* so I'm trying my best to plan for the trip by making sure I have ALL my sunglasses with me - just in case.

  • My autoimmune issues mean that UV rays increase my antibody production, which attacks the organs and tissues in my body and causes a flare of disease that makes me very sick. As a result of this, I said I could only go if I had a cabin that at least had a window, as it is likely I'll be spending the bulk of my time there and at least want to be able to see the environment around us. It's not a perfect solution, but hopefully it will make me feel included and allow me to feel like I'm actually in Alaska and not just along for the ride. The noise I'm pretty sure I'm going to be exposed to with the sheer number of kids on board, is also an issue that I'm hoping will be made easier with our cabin. 

  • I am working with my headache specialist to be sure that I am well-equipped with a written rescue plan if I'm caught off guard while on the boat. Cruise ships are not known for having fabulous medical services, and I could be in serious trouble if my medications fail me. I don't know yet what all this will entail, but I want to have a mag IV setup as well as injectable rescue meds. Going to the ER in this case could potentially mean a helicopter ride to the local hospital and the loss of the trip as well as finding a way back home again. I need to be as prepared as I can.

  • I have been working for the last 7 months to plan ahead for maximizing my preventive therapies to maximize the time I'll be able to participate in activities. Things didn't exactly work in my favor where this is concerned - I basically am starting from scratch on my Botox right now - but it's the best we can do.  I'm all about optimization right now, so no sense crying over spilled milk.

  • We're planning our excursions this weekend. It's vitally important to me that my family not be held back because of my chronic illness, so I kind of forced them to get together and sign up for the trips they really want to take. I haven't signed up for anything yet, because I really don't know what I can do at this point, and I may end up having to spend a good deal of the shore time in my room to avoid the sun. This again isn't ideal, but crying about not getting to do the things I've dreamed about for 4 decades is really not helpful. (I admit, I've done my fair share the last week I'm afraid)

  • We're planning how to pack all my medical supplies and equipment so that I don't have another run-in with airline staff over my need to have my things on board with me vs in checked baggage. It's going to take cooperation between all of us to make it happen safely, but thankfully my family knows how important this is and I think we'll be okay.

  • We are taking a larger plane to get to the port in Seattle. This will help stack the deck in my favor that there will be fewer problems getting my medical supplies on board, having the room to stow them and having more restroom choices should I need to make an emergency run for the border. 

  • I'm trying to concentrate on the things I'll be able to do while on the trip, instead of those things I'll be sitting on the sidelines for, or missing altogether. I just CAN'T get caught up with being sad about what I want and need to make peace with being happy with those I can do.  This is a daily struggle at this point. Sometimes, even moment to moment. Those of us with chronic illness know full well that this happens though, and often this is how we get through each day of our lives.
There may be even more things that we do to maximize our experience on this wonderful trip. I'll write about them as they come about. In the meantime, maybe some of my readers have suggestions for me that I've not yet thought about??

This post is my response to the July 2013 Headache and Migraine Disease Blog Carnival.

Monday, June 10, 2013

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...

Friday, June 7, 2013

"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

Wednesday, June 5, 2013

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:

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

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...

Tuesday, June 4, 2013

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.


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:

"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

Monday, June 3, 2013

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

Migraine and Sleep

Today's Migraine and Headache Awareness Photo Prompt is Sleep.

I am one of those lucky patients whose head always hurts.  My comorbid conditions make the rest of me hurt too, so sleep is often elusive.  For me, it requires dark bedding, a neck pillow, a pillow between my knees to stabilize my back and hips, and a heating pad that won't shut off.

The Migraine bracelet is always there to remind me I am not alone.

Sunday, June 2, 2013

Alone, Lonely - Migraine Life Without my Beast

Today's Migraine and Headache Awareness Month photo prompt is Alone, Lonely... so I took a photo of what immediately comes to mind when I see those words.

The loss of my dog, Beast.

You see, my big dog is nearing the end of her life.  She has pancreatitis and is in the mid-stages of liver and kidney failure.  She has rheumatoid arthritis, bad hips and a bad back that hurts her so badly she can hardly walk.  The pain meds we have to give her to keep her moving are also destroying her organs.  She has dementia and is about 75% incontinent.

And, I can't help but add, her farts are so potent even she leaves the room when she toots!

She is 15 years old.

Beast never leaves my side unless she is forced.  She is uncomfortable having me out of her site, and I am so used to her being with me, that I depend on her to tell me whenever anything is going on around the house... despite the fact that she is also about half deaf and her eyesight is also failing.  I have other dogs, but they wander the house occasionally leaving me alone with my work.

The dog bed in the photo actually belongs to one of my little dogs, but if Beast ever finds it empty, she twirls herself around and plops onto it, pretending to be one of the little guys.  She looks embarrassed that she barely half fits, and seems annoyed when we laugh at her for trying.

The day is coming that we'll lose her.  And when I see the empty doggie beds, it's going to tear my heart into little pieces...

X-Men and Chronic Migraine Heroes

Migraine & Headache Disorders Super Heroes: Who in your life goes above the call of duty and how?

It's no secret that my hubs has become my biggest hero throughout the years. I haven't often mentioned why...

I wish I could count the number of times I've heard people tell me "Do you have any idea how lucky you are that your husband has stood by you through all of this?" I am immediately ashamed that I would be the cause of a life others would consider something they couldn't live with, but of course, my answer is, "Yes".

When I met my husband, it wasn't his looks, his accent, or even his height or age that attracted me to him. I was almost 15 years old, and it would have been easy for those reasons to have turned my head.

It was something in his voice and the look on his face when he saw me that did it. Within seconds, I found him to be respectful, caring, polite, and charismatic. He had me smiling and laughing almost from the first moment. He was a christian too, and that floored me. I had no idea at the time that I would spend the majority of my life sick and disabled. I just knew that I enjoyed spending time with someone for whom those characteristics and ideals were important, as they were also important in my own life. I knew he was someone I would enjoy spending my whole life with.

My hubs has had his tough times with this illness business. It wasn't always easy. In fact, in the beginning he thought I was lazy and just needed a regimented, written schedule to get me through the day. So he wrote me one, placed it prominently on the refrigerator,then made me promise to stick to it for a week. He was SURE this would cure the problem. When it didn't, he still didn't let loose of the idea that it was some personal weakness that could be fixed, that was the problem. 

Every day he came home from work, he would open the front door and with a frustrated voice say, "So..... what did YOU do today?"

Most of my readers will immediately understand why this made me bristle. In fact, it caused a good number of fights. I briefly even considered leaving because I couldn't stand playing this blame game every day. But divorce wasn't in my personal vocabulary, and leaving never lasted longer than an afternoon's drive through the forest where I always feel my calmest. I knew he loved me. I knew the problem was that he didn't understand what was happening to me. I didn't even understand what was happening to me!

Soon he had to come to appointments with me as I wasn't able to drive for a while. That's when the lightbulb went on. He heard the doctors struggling with treating me. He saw me endure abuse that I was encouraged to report to the state examiners as it was so serious. He watched me nearly die from a drug interaction. When he tried to help me and couldn't, he began to understand that this wasn't something that could just be overcome by willpower and a schedule. 

My husband has picked me up and carried me like a baby. He's spoon fed me. He's cleaned up messes you never want someone you love to even see, let alone handle. He's stayed up all night rubbing joints and caressing my face for distraction. He's rushed me to the hospital and grabbed the arms of doctors so we could get answers. He's yelled at staff to get me the treatment I was being denied. 

Without my husband, there's no doubt I would have given up all hope, and most likely my life, long ago. 

He is my hands when I need lids lifted, arms when I can't reach something. He's my legs when I can't walk, and my back when I can't get out of bed. He's my balance when I can't stand in the shower by myself, taking a fully clothed shower so I could get the relief I needed from the hot water. He's been my secretary, writing down my meds so we can keep track of what needs to be taken when. And he's been my voice when I can't speak.

When I gave up, he wouldn't let me. 

When I was distraught, I asked him to divorce me so he could have the life he deserved, but he refused. 

Sometimes we fight. He has the right to lose his patience once in a while. He has the right to feel angry, and the right to act out once in a blue moon. He didn't ask for this life any more than I did. I try to keep my mouth closed when this happens, because I know how I need to vent sometimes, and surely he must be the same. 

Who is your Migraine and headache, or chronic illness hero? What makes them special to you? Take a moment and think about it, then join us in talking about them:

Migraine & Headache Awareness Month Blog Challenge #2 - X-Men


Saturday, June 1, 2013

Comfort, Peace, Coping

This is the theme for today's Migraine and Headache 
Awareness Photo of the day.

In addition, I am including the Team Migraine "M" in 
each of my photos. Make the Team Migraine "M" 
with your hands in the photo and use that to help 
generate conversation too! 

Today's prompt is Comfort, Peace, Coping
My beautiful mare Sammy gives me comfort and 
peace, and my hubs helps me cope from day to 
day.  He too is a great comfort to me.I want 
people who see them to wonder what's with the 
"M".  Maybe ask a few questions, generate a few 

If you're participating in the Photo of the Day, I 
encourage you to do the same.

Take and share a photo each day of 2013 
Migraine & Headache Awareness Month 
(MHAM) this Juneusing these prompts for
 inspiration. Use your creativity in interpreting the
prompts. There is no right or wrong way to see 
Share your photos on Instagram, Facebook, 
Twitter, Tumblr, Google+, yourblog, etc. Use 
the hashtags #MHAM #MHAM2013 and/or 
#MHAMPC so others can find & identify your photos.

Wednesday, March 20, 2013

Hello American Headache and Migraine Association!

Those of you who follow me on are aware that a good portion of my time these last several months has been spent working on a groundbreaking new Migraine and headache patient organization we have named the American Headache and Migraine Association (AHMA).

AHMA is an arm of ACHE - the American Headache Society's committee on headache education.  As such it falls under their 501c(3) status, and all donations to AHMA are tax deductible.

Coming soon is an awareness store chock full of amazing things that will help bring awareness to these disorders, but also help make you a part of this Team Migraine movement.100% of the proceeds from the store go to the organization.

A member forum is a great place to connect with other members and share your experiences while you learn from others.  

Many other opportunities are in the works as well.  A mentoring program, and a lot of really neat ideas.

The best part of this new organization is that we are currently working on our very first patient conference to be held on November 24, 2013 in Scottsdale, Arizona.  

We have some amazing speakers already lined up and ready to talk to you, your families and care partners.  Wouldn't you love to join us?!

This is an amazing opportunity I hope many of you will be able to avail yourself.  Many of us advocates will also be there, and I hope to get the chance to meet you!

For more details on joining the AHMA please see the AHMA blog.

Live your best life,
Ellen Schnakenberg
~patient educator and advocate.

Wednesday, January 2, 2013

Goodbye 2012!

2012 brought with it a lot of heartache and stress.  I'm not sorry to see it go.  However, I'm not sure that I'm ready for 2013 either, with it's uncharted territories and scary new things.

In a week I'll be trying a new specialist and new treatments.  This is always a scary thing for me, as my history with doctors has been dubious at best.  Many of my readers have had similar experiences and will understand my trepidation.

Goodbye 2012.  I have made peace with your passing... not that I had any choice.

Thank you for your lessons.  Thank you for the new friends you brought my way.  Thank you for helping me become stronger.  Braver.  Wiser.  Without you I would be much the poorer.

Hello 2013.

Please don't let me down.  With your birth I feel hope, but I am also afraid.

Please grant me friendships that strengthen and new friends that enrich me.  Please keep my losses this year to a minimum, as my soul loses pieces each time I lose someone or something dear to me.  Please make me braver tomorrow than today, and smarter so I can continue to help other patients.  Speaking of patience, lol... give me more please, so the stress seems less overwhelming.

Happy Birthday 2013!