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Friday, June 29, 2012

More Often Than Not #NMAM #NMAMBC

If I could do one random act of kindness for someone suffering from chronic migraines I would prepare a tasty, healthy meal for them and their family. Food is one of those things, sure it's a daily essential that so often becomes a bothersome chore when high pain takes over. But food should be a pleasure, it should be something that brings us together so our relationships get nourished as well as our bodies.

I wish that for every person, every family impacted by chronic migraines. More often than not it is hard to prepare daily meals because of the pain, fatigue, nausea and sensitivities. I get that. Bringing an evening meal would be something I could manage and would hope could help foster that nourishment.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Thursday, June 28, 2012

Lights, Camera, Action #NMAM #NMAMBC


This is a tough one. These days I don't identify with many characters in the movies. But if I were to pick one I guess it would be Kate from French Kiss. Okay, so it's a cheesy romantic comedy starring Meg Ryan but I've always enjoyed it.


Kate and I have a few things in common but perhaps the more glaring thing we share is our fear of flying:




The very thought of flying makes me feel like this...


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 26, 2012

From The Outside Looking In #NMAM #NMAMBC


Living with chronic pain is a tough thing to imagine if you have never had the experience. Everyone experiences pain, fatigue, headaches and the like but when these things are part of your daily life it is a whole different ball of wax. Inevitably, well-meaning people say things that really highlight this lack of understanding.

All together the things they say paint a picture in my head of what they imagine my life is like. And it is nothing close to reality. They think I have all the time in the world to do whatever I want, whenever I want. They think my days are essentially their vision of what they would love to do if they didn't work.

Of course, this vision completely ignores the fact that the only reason I'm home is because pain, fatigue, migraines, brain fog, and all are a big part of my daily life. I can't function like all my able bodied friends and family. Additionally, this vision ignores the fact that just because I don't have a paid job, doesn't mean I don't have obligations and responsibilities. I do, plus I'm constantly trying to control my symptoms.

When you are outside looking in it's never easy to see what's really on.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Sunday, June 24, 2012

Dear Genie

Writing a wish list for my life is super easy. Dreams and desires are not in short supply here. I bet you guess what's at the very top of that list, as it is likely at the top of anyone's list who lives with chronic pain.

1. I wish my chronic migraines and fibromyalgia would GO AWAY!
2. I want to have at least one child
3. I want return to work
4. I want to own a home and grow some veggies on the land
5. I want my marriage to continue to be healthy and happy
6. I wish my chronic migraines and fibromyalgia would GO AWAY!
7. I want to have more energy for doing the things I love to do
8. I want my life to have balance and purpose
9. I want to always share my home with animals
10. I wish my chronic migraines and fibromyalgia would GO AWAY!

What do you wish for in your life?

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 22, 2012

I Learned the Hard Way #NMAM #NMAMBC



Over the six years since my migraines got out of control I've learned some important lessons the hard way. 

I've learned that neurologist don't necessarily have the knowledge to properly treat the complexities of chronic migraines. If you can access one, a headache specialist is the way to go. I wasted years taking preventative meds at doses too low to be therapeutic - ouch.

I've learned that I need to keep moving and keep living despite feeling lousy and unmotivated. Doing so is good for the body and for the soul. 

I've learned how important it is to be kind to myself and to say no when something is too much for me. Now I still have a long way to go in the practice of these two things, but I do know it is important it is. 

When it comes down to it, I really appreciate all the lessons I've learned, even those learned the hard way. This is a significant journey I'm on and these lessons have not only helped me to live better but also help me find some value in this life challenge. As the journey continues I look forward to what other lessons I may learn.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Thursday, June 21, 2012

Shaking in my Boots #NMAM #NMAMBC



Living with chronic migraines and fibromyalgia has been such a challenge. A huge unexpected challenge that has forced all kinds of change and uncertainty into my days. And that has been so scary. 

My fears are too numerous to list here but here are some of the big ones:

 - I fear that my conditions won't improve
 - I fear that I won't ever be able to work again
 - I fear that my health care costs will soon become too high for us to afford
 - I fear that my fears will take over my life

At the heart of all my fears is the fact that I feel so utterly vulnerable. 

Keeping these fears in check is in itself a challenge. I work hard at not allowing myself to dwell on all the scary what-ifs my brain can imagine. After all, most of what I fear I have little to no control over. And the things I do have some control over, well, I try to keep those thoughts hopeful.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Wednesday, June 20, 2012

Moving On #NMAM #NMAMBC


I'm having a difficult time focusing on today's blogging challenge prompt, which is about the best approach when it's time to move onto a new doctor. The reason being that yesterday afternoon I received a notice by mail from my doctor's office that he was leaving the practice and that I was being randomly assigned to a new doc. 

This has completely thrown me. I was just getting established with this new doc, who I really liked and now I don't even know what's going on. And, of course, I can't seem to reach a person at the office.

Oddly enough, I'm being forced to move on when I don't want to.

BUT, more often we find ourselves making the decision to move on for various reasons. When this happens I tend to take one of two approaches depending on how involved I am with the doc. 
 
Approach 1: Just search out a new doc, make an appointment and never return to or give reason to the old doc. I do this when I've only seen a doc for a short time or if they have done something really unacceptable to me. I just feel like it's not worth the effort to try to explain myself.

Approach 2: Have a conversation with the old doc. If I have had a good working relationship with a doc and respect their opinion I will ask them to suggest a next step with me, another doc to go see. I figure any doc worth their salt won't have a problem with this.

What approach do you take?

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 19, 2012

The Match Game #NMAM #NMAMBC


So many doctors, so few good fits. Is there a perfect one out there for each of us? The pessimist in me says no, and even if there were, what are the chances you could access him or her. But a girl can dream...

If I were to design the perfect migraine doctor for myself she would be:
 - a good listener
 - very knowledgeable about migraines
 - up on all the latest research
 - doing some research herself
 - able to take into account what I know about my body
 - working in a practice with excellent office staff and nurses
 - easy to get in touch with when you have unexpected problems or concerns
 - not so busy that I can't get an appointment for several months
 - have great bedside manner

I've seen all of these traits over the years, just never in the same doc. A girl can dream can't she?

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Monday, June 18, 2012

The Price is Right #NMAM #NMAMBC



This is an easy one, if money were no object I would fully fund migraine research. Not drug company research for new abortive medications that they can cash in on, but research to find the cause for migraine and chronic migraines and subsequent ways to treat that cause to really cure migraines. 

Seems like some diseases get a ton of attention and funding while others don't get much. When it comes to migraines it seems like most of the funding and attention is focused on medications to treat or prevent regular migraines, which don't seem to help many of us with chronic migraines. 

More than anything I wish we knew the actual cause and could change the course for all of us who suffer from the ravages of chronic migraines. A girl can dream...

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Saturday, June 16, 2012

Lead, Follow, or Get Out of the Way #NMAM #NMAMBC

Lead, follow, or get out of the way...which is me you ask? The answer to that is anything but simple. The answer is, it depends.  It depends on the situation and how I'm feeling.

Is that normal? It's something I've never given much thought to but am now wondering about. Do most people predominantly gravitate to one of these roles? I would love to know your thoughts on this issue, please share.


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Thursday, June 14, 2012

I See You #NMAM #NMAMBC


I like the idea of greeting and parting with the words, "I see you." This is something I've always said to my pets over the years when they would try to get my attention or if they were proud of something they were doing. I wanted them to know I was here and reassure them that I was tuned into them. Not that they always knew exactly what I was saying but they seemed pleased when I said it anyway.

Then when Avatar came out several years ago I couldn't help but notice this was the greeting they used. Seeing that got me thinking about the broader meaning. Isn't that what we all want; to be seen, really seen and acknowledged? 

This is even more true for me now that I have an invisible illness. Being seen and acknowledged is what I hope you all have in your life.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Wednesday, June 13, 2012

You are beautiful - #NMAM #NMAMBC


Today I'm supposed to write a love letter to myself. This is a tough one. Even though I am incredibly thankful for all the blessings in my life, when I think about myself I often think about all the ways my body has failed me.

I guess that makes today's prompt an important exercise for me. So...here it goes.

Dear Self,

Even though your body doesn't cooperate you need to remember that you are still a good person and still capable of contributing to this world. I want you to be kinder to yourself, not just in your actions but also in your thoughts.

In the six plus years since Chronic Migraines and Fibromyalgia took hold of your body you have continued to press forward. You have become a good cook and have helped to improve the overall health of your family. You have revamped your workouts to be manageable in this new situation. You started blogging, managing to maintain it for 2 1/2 years now and counting. You have adopted a rabbit in need of a home. You have designed a cozy environment for you and your family to live in. You have put together two family photo share sites.

You take good care of your husband and pets. You are a good friend. You are a good wife. You are kind to people. You have maintained your sense of humor and are able to laugh at yourself even more than you did before. You are creative. And you still have hopes and dreams.

You are truly doing the best you can everyday. You haven't given up. 

Always remember you are loving, you are loved and you are blessed. 

Love Yourself

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 12, 2012

Gizmo to Gremlin #NMAM #NMAMBC



If I were to choose a movie monster who reminds me of my migraines I would choose Gremlins. Remember this movie?


These soft, cute, little creatures are all fun and games until...
















a seemingly harmless thing (water) turns them into these ugly, crazy, little monsters.















Sound familiar? My migraines emerge from all kinds of usually harmless things: being in the sun, bending down, alcohol, too much sleep, not enough sleep, being dehydrate...you get the idea.


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 8, 2012

Let There Be Light #NMAM #NMAMBC

To say I'm light sensitive would be a huge understatement. The sun is my enemy, my nemesis, the harsh unavoidable environmental hurdle I have to cope with each and every day.

I do get that the sun is such a vital part of sustaining life on this planet. We need it for food and nutrients and, well, life. I'm glad the sun exists and all, but boy does it cause my head some big trouble.

These are the things I do to lessen the impact the sun has on my head:
 - Wear dark sunglasses and hats
 - Use room darkening curtains
 - Avoid doing anything that puts me in direct sunlight for extended periods of time.

But the sun is only part of the problem. My light sensitivity frequently involves indoor offenders like the TV, computer screen and plain old-fashioned lights. Lessening their impact is a little easier. I've done things like:
 - Put low wattage light bulbs in all our fixtures
 - Lowered the level of brightness on the TV and computer screens
 - Design the lights to be mostly ambient
 - And sometimes just escape under a blanket to avoid the light all together

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.


Wednesday, June 6, 2012

Migraine Theme Song #NMAM #NMAMBC


When I think of a theme song, I think of something upbeat and positive, something inspiring and hopeful, yet rooted in truth. Perhaps because of all the Ally McBeal I watched back in the day. 

Trying to find a theme song for migraines has been a lot of fun. I considered some Bijork, Madonna, Beatles and Brian Adams but none were quite right. I ended up choosing the first song that came to mind when I started thinking about it: George Harrison's "Got My Mind Set On You." 

Some of you may remember this late '80s hit by the former Beatle. As much as I love the song, the video is just as much a part of why I chose this as my migraine theme song. Take a look at this great video while keeping in mind that "you" is perhaps the migraines.


I've always thought this was a fun video and a fun song. I love the crazy set with all the dancing props and pets. And when I watched it in the context of migraines I felt like it really hit the nail on the head. I often feel like my head is like that set where things are kinda crazy and don't make sense. The often repeated lyrics about "IT" taking a whole lot of spending money and precious time to get it right - well I think we can all attest to how much time and money it takes to try to manage our migraines.

Best of all, it makes me smile. It's a positive and hopeful, catchy and fun.

What do you think - does it fit?

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 5, 2012

Comfort or Something Close #NMAM #NMAMBC

Comfort is hard to come by these days, especially when having a migraine. But it is in these times of pain when seeking comfort is never more important. Even though true comfort may not be achieved, doing whatever I can to mitigate it certainly does make a difference.

The comfort measure I turn to time and time again is retreating to a migraine friendly space. This includes:
- room darkening curtain
- my basket of meds
- pillows and blankets on comfy furniture
- Netflix at low volume and dimmed on TV
- room temperature water
- looking at my cute pet bunny doing his bunny activities

This migraine friendly space I've created is all about blocking out the things that make the pain worse, creating all kinds of soft support for my body so it can relax as much as possible and, of course, distracting myself with light-hearted shows. This combination has worked quite well over the years. Honestly I can't imagine doing anything else during my rough days.


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Monday, June 4, 2012

Summer Fun? #NMAM #NMAMBC


If you're anything like me the long, bright, hot, humid days of summer present all kinds of challenges when all you want to do is have some fun. The very nature of these activities (BBQ, beach/pool day, picnic, outdoor patio, concert/festival, vacation, etc.) make managing my pain extremely difficult - well impossible.

The problem is really two fold. First, all that hot sun and humid air changes the pressure in my head, which jump starts a migraine. Couple that with being out in the bright sunlight, which causes enough strain in my eyes to really galvanize that migraine. Second, doing these things disrupts the routines I have in place making it difficult to maintain the delicate balance that help optimize my comfort. For example, keeping hydrated, eating the right kind of foods, taking all my vitamins/medications at the right time and moderating my activity level all become nearly impossible.

Like everyone else, I still want to have some fun over the summer. I want to socialize with my friends and family, but these days all plans for fun are coupled with varied levels of anxiety. I worry about having a really bad migraine before I go that prevents me from participating at all. I worry about getting a migraine during and what my escape plan will be. I worry about ruining a good time my husband or others might be having. I worry that I'll be judged by my brain fog or muted affect - after all I don't look sick (sarcasm).

Being well prepared for any summer activity helps me to mitigate the inevitable anxiety.
-resting beforehand
-taking a bottle of water with me
-wearing a hat and dark sunglasses
-planning for recovery time afterward

After moving closer to family and friends last summer, I found that these things I used to do were no longer going to be enough. These days our plans often involve many more people than when we lived far from home. This summer I'm going to add some new strategies. There are some activities that just no longer sound like any fun such as going to outdoor concerts or shows. Fortunately my husband doesn't enjoy these kinds of activities so we just won't do them. Other activities still sound like fun but I know I can only handle them for shorter periods of time, such as BBQs or picnics. There is no reason we can't go and have fun but I will need to be able to get out of the sun and we need communicate that I can't participate in something like this for extended periods of time. (plus I'll need to eat in advance and have food available after because BBQs are not designed for vegetarians like myself).

Hopefully by the end of this summer I'll be able to better manage summer fun. What are your strategies?


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Sunday, June 3, 2012

Trigger Trouble #NMAM #NMAMBC

Identifying, managing and avoiding triggers are supposed to be a big part of managing and avoiding migraines. Sounds easy enough, right?

Well, not always. I've spent a fair amount of time trying to figure out what my triggers are in hopes that I can cut down on the severity and frequency of my migraines. Through this process I learned that my biggest trigger is living. The very fact that I'm alive in this world is enough of a reason for my head to whirl out of control and take me down.

Either everything can trigger my migraines, or nothing triggers my migraines. Honestly, I am not sure which it is. Any strong smells, sounds, bright lights, too much movement, not enough movement, anything that puts pressure on my head or neck, not enough sleep, too much sleep, too much activity, reading too long, having long conversations, bending down too much, basically life is one big trigger. And it is impossible to avoid.

I am attempting to manage it though. The idea is to practice moderation and pacing. It is this practice that is the real challenge. Life speeds up and slows down. Things happen that you can't plan for. That's life. Even under the best of circumstances this practice is a challenge to my natural tendencies and habits. Add in any kind of change and all sense of pacing and moderation go out the window.

As much as I wish I could impart some wisdom as to how it's done, I'm not exactly the post child for a balanced migrainista - at least not yet. The biggest thing I'm doing right, at this time, is keeping at it with the hope that one day I'll get the hang of it.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Saturday, June 2, 2012

Magic Understanding Tea #NMAM #NMAMBC



If I were to invite someone to join me for a magical blend of tea that made them capable of understanding what it's like to live with chronic migraines...well, who would it be? At first I was trying to decide which family member I most wish could understand, but then I got to thinking bigger. I wondered who had the most power to impact the lives of all of us living with chronic debilitating migraines. 

Who indeed. 

Honestly, I don't know who that would be. As I sat tossing around various ideas in my head I began to feel overwhelmed. Time to stop over thinking this and just pick someone in my life. 

I decided to invite my mother-in-law to tea. Like many family member she doesn't really know much about migraines but really wants to be helpful. She is always trying to solve the problem for me. She wants me to try all kinds of things that I've already tried. I know it all comes from a place of love but she wants me to try all these things again with the people other people tell her about. She always says, "it doesn't hurt to try." 

The nature of her position as my mother-in-law makes it difficult to do anything but agree with her once the conversation reaches that point. I guess I want her to understand chronic migraines more than anyone else in my life because her misunderstanding produces the most stress for me. She is a big part of our life and I would love it if she could be on the same page regarding my migraines. 


"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 1, 2012

My First Migraine #NMAM #NMAMBC


This year I've decided to participate in the Migraine Awareness Month, Blogging Challenge. Meaning, each day this month I'll be posting according to the prompts. The challenge is a bit daunting as June promises to be a busy month and one during which I won't have the comfort of my usual routine. But here it goes.

Today I'm going to share the story of the first migraine I remember having. I say the first one I remember because I was quite young when I started having migraines (some 25 years ago) so I can't be certain this was my first. It was just the first one I remember and likely the first really horrible one.

I was 8 or 9 years old and hadn't felt well throughout the school day. By the time I got home, I was in so much pain I drew the shades in my bedroom, crawled into bed, pulled the covers over my head and tried to keep as still as possible. The pain so intense nothing I did helped. I remember being so overwhelmed with pain that it didn't take long for fear to set in. I remember thinking something must be wrong, this kind of pain can't be normal.

Between the pain the fear and the tears I just wanted my mom. But since she was at work I made the command decision to crawl down the hall to the closest phone, which happened to be in her bedroom. I pulled the phone off the nightstand and dialed her work number. At the time she was a county social worker and I had to go through the receptionist to reach her. I did my best to pull myself together and hide the fact that I was crying as I asked to speak with her.

Fortunately my mom was very familiar with migraines having been raised by a mother who suffered from them. She was able to recognize that I was having a migraine - not dying as I thought. She told me what was going on and said that she would be home as soon as she could. I stayed there on the floor of her bedroom with the phone until she got home and carried me back to bed.

All these years and countless migraines later the fear still creeps up when I'm having super bad pain. Obviously I know what's happening and know that I'm going to be okay but that pain...ufta!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."