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.

Lessons and life with Migraine and Disney

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With seeing the new Beauty and the Beast and planning a trip to Disney World this year, I have been reminded of a lot of lessons learned through Disney.

Today I reminisced to the very beginning of my blogging adventures.  I wrote a post about Aladdin that was short and sweet but meaningful to many Disney movies and life lessons.

This week I will repost my Disney World, the good, the bad and the migraine series.  Please follow me on:

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These posts will not be directly sent to my email list due to reposting, so follow along….

For today, a flashback to my thoughts on Aladdin and a Whole New World

Comment on the lessons you’ve learned through Disney movies

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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?

Wait, it’s November?

This is our family thankful tree. Each day was add someone we are thankful for.

I was really sick before, during and after Halloween (of course.) Then I spent the week getting myself back into the vertical world.  I woke up today and realized it’s November!  Last week we had beautiful weather and played outside and it didn’t feel like Fall until today.  Frost on the ground, pain all over, mental emotions a mess….yep, sounds like Fall turning to Winter.  So here we are and I haven’t written a post about being thankful.  I have seen people post what they are thankful for everyday, but that’s realistic this year.  So instead I’m going to ask for your help.  Tell me what you are thankful for and I will accumulate a list.  I will repost this list throughout the year to remind myself and you that even in the lowest times, being thankful may help.  So here is my post from last year.  I mentioned many people in my life that I am grateful for but please add to the list whatever makes you thankful.    I will also be adding to the list and trying to focus on things I am thankful for DESPITE migraines.  So many things are taken away because of my migraines and I want to somehow be thankful for things even though I suffer.  If you do not wish to have your “thankfuls” on the list, please let me know.  Otherwise, I’ll accumulate them and post once Thanksgiving is over.  Please share with your friends to participate.  So many people deal with their own demons and adding to the list may help them focus on something positive today.  Post on My Migraine Life facebook page, twitter or instagram.  I look forward to hearing what you are thankful for!

     Last year’s post

“What would you do if your dream of a pain and a completely symptom free life, came true?”

It’s invisible illness week. So many people suffer from issues you can’t see. Before judging someone, understand who they are inside.

My Migraine Life

Life without pain? First thing I’d do is travel. I’d jump on a plane, not care what foods I packed and get off in a tropical location. It wouldn’t matter that the barometric pressure or weather was dramatically different. The sun wouldn’t bother me, I may even walk around without my sunglasses. If I was dehydrated or stressed from the flight, that’s ok, I’d drink a glass of water, take a deep breath and not need to pop pills and go lay down. I’d drink and I’d drink a lot. Red wine? Why not? I have never been able to drink it, so bring me a bottle. And while you are at it, bring me all of my trigger foods. I would lay out in the sun and not have sensitivity to the heat and read all day because the words wouldn’t be blurred in pain. Maybe I’d go shopping…

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Time for another GIVEAWAY!

It’s time again for another GIVEAWAY!  In honor of Migraine Awareness Month I am giving away a beanie cap cover for the Headache Hat ice pack.  I, personally, have 3 Headache Hats so I never will be without one when I need it (which is pretty much daily!)    Now the maker of The Headache Hat has provided a beanie cap to wear over the ice pack in order to run errands, drive, or be out while discretely wearing the Headache Hat.  If you don’t own a Headache Hat and would like to buy one, you can go here and use MYML code at checkout for a discount!  If you know someone who loves the Headache Hat like I do and think they’d like to win, please pass it along to them.  It’s a short giveaway since the month is ending soon, so enter NOW!  The giveaway will run from 6/26/15 12:00am through 6/30/15 12:00am.  You can have an entry for each of the following: following on twitter, like My Migraine Life’s facebook page, and/or comment on this post saying where you plan to wear the hat.

Click on the link below for your chance to win!!!!!!!!!!!!!!!!!!!!!!!!!!!

a Rafflecopter giveaway

Make sure to clicked on the link & click that you visited in order to be enrolled. . Good luck & thanks for following 

All in Cleveland, All in Migraine, All in Hope

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While watching the Cavs last night I had no choice but to compare Cleveland sports to my migraines.  I did this not because watching them gives me a headache and nauseous, although it has, but because it gives me hope.  When the TV flashed, “last time Cavs won a championship…NEVER” my heart pounded and head filled with thoughts of possibilities.  With the theme of Migraine Awareness Month being hope, I had no choice but to make a comparison.  Watching losing teams year after year can be defeating just like losing year after year of having Chronic Migraines.  I continue to change my line up and think positively but more often than not a season slips through my fingers.  This year we had hope.  I find it ironic that I started my blog a year ago and my fight changed.  When LeBron came back, things changed.  LeBron embarrassed me, angered me, and frustrated me in the past.  All of these feelings I have felt with my disease.  It’s like, just when we had something going, it left and practically laughed in my face.  I’ve been there, done that more times than I’d like to remember with my pain.  But then he came back and I was optimistic, excited, and encouraged.  Once again, all the things I have felt with blogging, new medications, surgery, and more.  So the finals came and we got injured.  They said we couldn’t do it.  Then another hit and we were down another man.  Our team battled.  Just like any good athlete and true sufferer knows, you fight.  With these changes came strength from the bench that was unexpected.  I have amazed myself at the times I thought I was completely down and found another source of strength to get me through.  In the game last night, I had hope.  Hope that the “never” would turn into the “now.”  The thought of winning a championship that had never been won gave me hope that maybe my battle wouldn’t always be a loss.  History would be or could be changed.  Things would be exciting and new and different.  The hope of something different for Cleveland gave me hope for something different in myself.  I know it sounds crazy, but seeing something many thought impossible become possible is inspiring.  Until the last second of the game, those boys fought.  They were down but they were not out and never gave up.  Even though we lost, they taught us a good lesson.  There is hope, the impossible is possible or at least something that can be within grasp and to never give up.  They may not have won, but not every victory is a championship.  Hope is looking forward.  #AllinClev #AllinMigraine #AllinHope