Disney World. The bad

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Every good side has a bad side. I was happily surprised that I saw little bad while I visited Disney World.  The bad thing that I did see was ungrateful people.

My experience with meditation didn’t go well but something I find easy and beneficial to do every day is to show gratitude.  It comes easily being I have a disease that keeps me in a cold dark room and even the littlest bit of relief allows me to be grateful.

I also was a special education teacher for children with severe needs.   I can tell you that when you’ve worked with a child that is severely Autistic or is multiply handicapped you see the world in a different way.

So here’s the bad about Disney World….ungrateful adults.  I have always been able to work with difficult children because of the reminder that they don’t know any better.  I don’t give adults that benefit of the doubt.

As I was standing waiting for my family after a bathroom break (I told you we were hydrating!) I saw a most ungrateful man. He literally stopped in front of me and screamed at his daughter (or could have been his granddaughter, I couldn’t tell) about her band aid falling off her hand.

First of all, band aids fall off a moving hand.  Secondly, shame on him for yelling and embarrassing his daughter about such an insignificant thing.  As she hung her head I could feel the anger rise in me.

I texted my best friend and told her I considered tripping the man (hopefully scrapping his hand) and handing his daughter an extra band aid to put in her pocket.  I don’t go anywhere without band aids.  Kids fall and when they fall they need a band aid.  Even when there isn’t blood, sometimes a band aid just makes them feel better.

You know what doesn’t make them feel better, getting yelled at in a group of people.  How ungrateful!  He was worried about this tiny detail of his day and I am sitting there thinking of the Make a Wish family that had just walked by me.  I bet that family wasn’t worried about a band aid.  I bet their worries were real and powerful and that they would give anything to have their biggest problem be a band aid.  That family was smiling and laughing and  not worrying about such a small thing because they know BIG problems.  I wish that family could talk to that man and tell him about real anger.  Not anger at their child but anger at what they were suffering from.

Another time I saw the bad side of Disney was when we were on a ride. At one point the ride stopped and they made a statement about the ride stopping and that it would start again in a moment.  I heard a woman behind me groan and start loudly complaining about how she couldn’t believe it was ruining her ride.

It’s a funny thing about perspective.  My first thought wasn’t to complain it was to hope.  I sat there hoping that the boy I saw in a wheel chair with a feeding tube was being carefully wheeled onto the ride.  While this woman was complaining I was hoping that this sweet child would be able to experience the beauty and wonder of the ride that I was getting to enjoy.   While this woman was complaining with her working legs and loud mouth I would be interested to hear what that dad I saw pushing him would think.  I’m glad he couldn’t hear her and hope they got to enjoy!

Are these people bad people, of course not. I only heard and saw a small moment of their day.  No one is perfect and I ‘m sure they were dealing with their own issues.  Everyone has problems and everyone expresses them differently.  But from my perspective the bad thing about Disney is the ungrateful people.

I can’t go anywhere without negative people surrounding me and some days it bothers me more than others.  On a day that I felt OK and was literally looking to the sky being grateful for everything this world had provided me.  Then, I heard such nonsense of “band aid gate” and “let’s pause for a moment and complain.”

Let’s all show gratitude!

Part 3 of Disney World is coming.  You know it had to come…..the MIGRAINE!  This one has a great lesson.

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Axon Optics Migraine Glasses, natural relief

*This post contains affiliate links.  This means if you buy and click from this post I will be compensated by the  affiliate.  This in no way alters my opinion and I only recommend things I use.  I use these often!  I was given a pair to review and have used them often since.

Natural Relief

Before I had children I was a special education teacher.  The years after college; I was teaching, coaching, tutoring, and getting my Master’s degree.  That was all? ha.  At this point my migraines became chronic and pretty much elevated to a new level.  Stress, lack of sleep, noise levels and inconsistent diet triggered me daily.

Along with these were the lights!  I taught in very harsh florescent lighting during the day, coached in a bright gym and sat in front of a computer doing homework or lesson plans.  My eyes were so stressed that I sat in the dark during my free period and had the monitor brightness turned as low as possible.  I didn’t have a smart board at that time but if I had worked with one, I know I would have been pained every time I used it.

This was all before I was given a pair of Axon Optics to review.

I wish so desperately that at that time I had Axon Optics migraine glasses.  They have FL-41 lenses that block  blue-green light which was developed to reduce sensitivity to fluorescent lighting.  They sell a range of products that can fit many eyewear needs.  I found working with the Axon Optics staff easy and simple.  I appreciate this greatly!

I now use them to blog (I’m wearing them now!) and when my photophobia is heightened (which is everywhere!).  I use them everyday.  I wear them making lunches and dinner, doing homework, reading books, doing computer work, going into stores, starting my day (anywhere) and more.  If you see me, I’m wearing them!

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What’s your diagnosis and where does that lead you with Migraine?

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Millions of people are diagnosed with migraine and every case is different.  So what’s your diagnosis?  What’s my diagnosis?  What does it mean to be diagnosed and how does that help?  Here’s my non-medical opinion.

I have my Master’s degree in special education.  It has been really helpful in understanding how the brain works, fails and where diagnosis and treatment can lead.  I think an example that I can best use to describe the migraine spectrum is comparing Autism to Migraine.  

If you have ever met someone diagnosed with Autism, you understand that that person is an individual and like no one else (and aren’t we all?).  Although, these individuals possess some similar factors that place them onto the Autism spectrum.  Does every person with Autism look the same, act the same, react the same, learn the same way, and have the same health and reactions to treatment?  The answer is an obvious no.  Where one person may seem to have some slight social issues and not much more, another individual may need 100% care for various extreme behaviors.  You may have a full conversation with one person and another may be completely nonverbal and ambivalent to personal interactions.  While one person may see improvement with dietary and behavioral therapy others may require heavy medications and need full time care with little improvement.  Everyone is different!

I have seen my neurologist for many years and I decided to ask her what my diagnosis was recently.  I knew the answer was a Chronic Migraine sufferer with neck and shoulder issues caused from migraines which is called Torticollis.  At the beginning, it was important to be diagnosed with something.  It gave me great relief that I, indeed, was sick and not making it up issues as I was led to believe by so many.  With my diagnosis I felt vindicated and believed since I was diagnosed, I would be cured.  Years and years later, I know better.  My diagnosis is no longer as important as my journey.   I have been through so many medications, therapies, and procedures that I’m not as concerned about my diagnosis versus my treatment now.

So why ask about my diagnosis?  Like I said, at the beginning it was huge!  It provided me a starting point and that is what seems to be the best place to start.  Just like people diagnosed with Autism, it’s only the beginning and an idea of where to begin with therapies, tests, treatments and more.  It puts me into a category that I need to find where I fit.  I no longer go into my neurologist to look for a cure.  I don’t think she is going to hand me a script for a pill that will make my disease go away.  I was stuck in this mindset for years! 

I now know it takes work!  Just like in teaching,  I know I can help  at school but work needs to be done at home.  They can’t come to me to solve their shortcomings like I can’t expect my doctor to help me without putting in the work myself.  My diagnosis has become the place I started and the road that I have travelled. 

I helped with the process of diagnosing students and I had parents fight putting a label on their child.  All of us have labels. My diagnosis doesn’t define me.   I think it’s what you do with knowledge of your label and what you do with it.  You have a choice to ignore it, to get more opinions, follow your path, and problem solve along the way.  Once I realized I wasn’t going to be cured and that I needed to fight with a well-rounded approach of many therapies and life style changes, I was empowered.  My label is just part of who I am.  I am a mom, a wife, a daughter, a sister, an aunt, a friend, a teacher, a blogger, a dog and chocolate lover, a travel enthusiast, a Chronic Migraine sufferer and so much more.

What’s your diagnosis? 

How do you feel it defines your journey? 

Botox, Topomax and preventatives for Migraine and their side effects

Recently I was asked why I don’t take preventative medicine for my chronic migraines. What a loaded question! I actually do, I get Botox but the effectiveness is hit or miss and I get different side effects from the injections each time. I never know how I’m going to feel the days after, the effectiveness of the areas, and the time before it kicks in and wears off. This is the same as all preventatives with me.

Weighing the side effects and effectiveness is really what I have battled with for years. So  I took my medication vacation before I had children and  haven’t gone back to any (daily preventative) pills. Before this “vacation” and a ton of reflection, I didn’t understand the side effects that I was getting from the variety of medications that I tried. I have a hypersensitive body and brain which probably seems obvious. But growing up I didn’t understand the risks and damage that these meds were doing to me while I was under the impression that they would help.

I have taken dozens of different preventatives over the years….none of which are specifically made for migraine sufferers. They have been anti seizure, blood pressure, depression, and more. None of which I am diagnosed with. But in an attempt to curb these daily headaches and migraines I have tried it. I always trusted my doctor would steer me in the right direction but what I have learned is to trust yourself!

I was on Topomax for the longest amount of time and from what I remember was the most effective for the greatest amount of time for me. I say, from what I remember because memory loss, fuzziness and concentration issues are just a few of the many side effects I had from Topomax. I started out on a low dosage and slowly increased to keep up with my growing migraines.

Topomax didn’t make me loose weight like many have reported but it gave me all the side effects mentally. I was tired, confused, loosing words, moody, dizzy, lost hair, had altered tastes in foods and more. The crazy thing is, I didn’t understand that these were side effects of the medication until years after I was off it.

I remember reporting some of my issues to my doctor but thought it was just associated with migraine pain and everything else that comes with it. The hindsight made me realize that I wasn’t crazy. The drugs I was given to help me were hurting me! It’s beyond frustrating to think I was taking these meds and they were making me worse.

I can’t tell you how many times I’ve gotten prescriptions and read the side effects and been both horrified and terrified. But most of the time I read it once I’ve bought it and it’s too late. I don’t have the money to be throwing away something that holds hope for me. The risks now just don’t outweigh the benefit to me.   I have never felt great on anything, so why continue to take anything? Nothing has been approved for my diagnosis so why am I a human guinea pig in the mean time?

This is not to say that I don’t think they work and no one should take them. Everyone is so different which is why the battle is real for all of us. None of us are the same and don’t get the results or side effects the same. I don’t necessarily regret taking these meds that didn’t work for me. I regret not being more informed!!!!!!! I regret feeling like I was crazy, a hypochondriac, and a waste of time and money searching for relief. I regret not listening to my body and understanding the side effects of my medications.

Side effects made my condition worse, gave me other issues to deal with and have caused a lot of problems throughout my journey. I didn’t understand that my growing and changing body would require changing meds and it wasn’t a fail. I now see it as another move in my game of chess.   I can now check those things off my list and say “I tried it and no thank you right now.”

Does that mean I’ll never go back on them? Of course not. I will do whatever I can to feel better. Some days are more desperate than others but most of the time I try to be realistic and think both short and long term. I used to think my doctor was going to give me something to leave with that would cure me and make me feel normal. I didn’t understand that it’s a journey and there are no cures. It’s a combination and balance in my life that I need to look for. I think if I was going to give some advice it would be, “Understand what you are taking, both preventative and rescue. Understand how they work together and dosages. Read and understand the side effects and risks of any medication that you use. Be careful, be safe, and hopefully be well!”

Do you take a preventative medication for migraine?  What side effects have you had?

Thankfuls to remember and add to


Thank you to everyone who participated in sharing your thankfuls during the month of November.  Here are a few that I hope to look back on during the year to be remind of how much there is to be grateful for!  Please feel free to comment and add on to our list.

“I want to thank you for opening up about your journey.  To find you and to know you can function as a mother, human being and to love life even after 25 years has been so encouraging.  I have not found this before.  But when I have read your blog I feel there is hope as a mother, a nurse and wife.  Thank you in many ways!”

“I’m so happy you made this post!  I think you have the most amazing positive attitude by always seeking out the good things in life despite the pain!  I am exceedingly thankful for the love of my son and two little bunnies who cuddle with me when I need to be touched.  I am thankful that I am able to live near the ocean and travel there to feel the healing power of nature when I need it most.  And I’m thankful for the empowering influence of woman like you on the internet!”

“I am thankful I found your blog!  I think you may be my migraine twin.  As I read your posts, it is like I wrote them.  I am a year older than you but have not had a baby yet, mostly because I am terrified of migraines during pregnancy.  It is encouraging to hear your stories.  Thanks for posting!”

“Thank you for sharing this!   I can relate 100%.   I am thankful for my pain and who I have become because of it.”

“I opened up two gifts this morning, my eyes.  I’m grateful for that.”

“I’m thankful to be alive.  A dear friend is in her final days….each moment spent with her is a reminder of how precious life is, even when living with pain.”

“I am thankful I have great friends that are here to celebrate with me even though we only see each other a few times a year.”

“I am thankful for a full day here and there without a migraine.  I cherish those and makes me more grateful for a pain free day.”

“The roof over my head.  My family and friends that I’m able to advocate for myself and others.”

“I am thankful that I still have my mom alive at 91.  And I am very thankful for my grandchildren.”

“I am thankful for a peaceful room and my medication when I have migraines”

“Bless you for your kind caring heart!”

I am thankful for:

“Loving partner, family friends, warm bed, and migraine awareness spread.”

“My fiancé, my family, good doctors (there are so few).”

“Food!”

“Your blog posts that make me cry”

“Waking up and eating”

“Food, husband, kids, best friend.”

 

“Sow gratitude. Reap. Joy”

What are you thankful 

for?

 

 

 

Real Hope, Real Heroes

The INvisible Project creates pain awareness through the photographs and stories of real pain survivors. At last year’s Real Hope, Real Heroes Gala, this video titled “In Their Own Words” was featured. It highlights the intent of the program and what having an invisible illness means to them and impacts their pain journey. U.S. Pain challenges you to:  -Watch this video of Real Heroes within our pain community: https://www.youtube.com/watch?v=hc51H0tj4z8

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This post is inspired by Pain Awareness Month 30 day challenge run by U.S. Pain Foundation

Why it’s important to be connected to a self care movement and be a self care advocate

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I was approached by SelfCareMovement to share why it’s important to be connected to a self care movement and be a self care advocate.

First, what is the self-care movement?
“The mission is to transform perspectives about chronic illness and the way we manage it, to celebrate the greatness in ordinary accomplishments that patients face every day.”
“When people think of chronic disease, they typically think about the medical aspects of managing and coping with it. The less palpable aspects of everyday life with a chronic illness are often left unspoken about.” (see spoon theory)
Secondly, why is it important to be part of this movement and advocate?
That answer is a bit more complicated and ongoing.  I guess the simple answer is, if I don’t take care and love myself, my health will dramatically fail.  And if mama’s not well, the family can’t be its best.  So I take care of myself for myself.  I also do it for my kids, my family, my friends and my coworkers.  But the bottom line is, self care is for me to be able to enjoy those people, be with those people and be there for them at my best.
This is why I think it is important to advocate for self care.  As a mom, wife, and all those other roles I play, I have put myself last.  Putting myself last ends up triggering me and making me sick.  So I have learned that by taking care of myself takes care of them.  I advocate to be an example and reminder to those who don’t put themselves at the top of the list.
I post pictures on Instagram that I hope inspire healthy living, mind, body and soul.
I tweet and retweet migraine and chronic illness information to spread awareness and knowledge
I blog about My Migraine Life to show my readers that life is full of suffering and growth which can turn into something beautiful.  I try to be positive in the dark times and lift those up who need it.  We all go through a rollercoaster in life and being a positive light as a migraine sufferer and mom hopefully brings hope and inspiration.  I find great inspiration from comments, shares, likes and support I get from sharing my stories.  Knowing that I’m helping is very rewarding!
“Self-care is about experiencing greatness in the ordinary and simple day-to-day activities that help people feel better despite the challenges of illness.”
— Grace Soyao, Founder & CEO, Self Care Catalysts
Some examples of what I do to feel better despite migraines are:
  • Working out.  Walking, hiking, yoga, elliptical, stretching
  • Drinking lots of water.
  • Eating well.
  • Quality sleep routine
  • Acting like a kid again.  Playing, listening to music, singing,  games, sports, art, reading, and being creative
  • Pampering myself. I love massages, Espom salt baths, saunas and mani/pedis
  • Snuggles.  Touch is a powerful thing.  Tiny arms can give big  love and furry friends can be therapy.
  • Strong relationships.  Weather it’s date night, girls night out, family dinner, coffee talk or a quick chat at the water cooler.  Having positive people that lift you up important for self care
  • Vacation. Long, short, near, or far.  Feeling like I have gotten away changes my mentality
How do you connect to the Self Care Movement?  How do you advocate for yourself with self care?  Your ideas may inspire someone to take better care of themselves
For more information on Self Care Movement go to:
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