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.

Weather Swings and Migraine

I wish weather swings were as fun as real swings.  The way my kids laugh going up and down, back and forth looks fun.  Instead, the temperature goes up and down making my head sway back and forth.  

Weather is a huge trigger for me!   Living in Cleveland is not ideal for this!  From what I’ve read, it happens most places though, so I’m not going to blame it fully on location.

This week we had a 30 degree shift in two days!  There goes my head.  The barometric pressure squeezes me like a vice.  I have a barometer in my kitchen but I don’t need it because I am triggered before it registers.  My allergies kick up and my head gets so much pressure in it I feel like my eyes are popping out. 

The wind, hail and lightning against my windows gave me generalized pain EVERYWHERE.  The migraine, my joints, my stomach, the fatigue all revolved around the weather.  I’m so much better when it just stays the same.

So how do I stop the weather?  I haven’t been able to figure that one out.  I have no ideas on how to even prepare for the swings when I know it is coming.  I don’t like to take meds to prevent them because I would be doing that several times a day with the amount of triggers I have and the pain state I live.  

So how do I help myself during the swings?  I drink lots of water, keep my rescue meds close by, eat anti inflammatory foods, stay on my sleep schedule, try to take stress in stride and continue to do what I can to brace the not so fun swing I’m about to ride.

Where do you live?  

Do do these weather swings trigger you too? 

How do you deal with weather swings and shifts?

I know I’m not alone! 

Letdown Migraines from Stress, Weekends and Events

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I get letdown migraines, have you heard of these?   I get migraines from the down slope of the week landing on the weekend and from stressful events.

During the week, I have a schedule.  I run things like clockwork in order to keep my children and me on track Monday through Friday.  Being on a schedule is huge for children and good for my migraines.  We know what to expect, are able to prepare and we all go with the flow.  But on the weekend, it’s a free-for-all.  Free-for-alls are sometimes fun but usually end in meltdowns and migraines in my house.

I am a  teacher and at some point during the  weekend spend time  in bed with a migraine.  I also get spikes during the week after school and in the evenings before bed.  These are letdown migraines from school and in preparation for the next day.  This happens to me most days.

Once the weekend comes, I get freedom, let down my guard and spend most of my time with a migraine.  My sleep schedule is off, I go to bed later, try to sleep in but mostly am thrown from too much or too little sleep.  I eat unhealthy and at different times than I do during the week.  I go to events with my family that often trigger me through light, sound, and activity.  Everything adds up to a migraine.

Along with letdown migraines from the week, I get migraines from the letdown of stress.  This means, when I am stressed, I can get through the event relatively well but once it’s over, my migraine spikes and I’m bedridden.  Think holidays, vacations, work events etc.

When my husband travels, I get a migraine both before and after his trip.  I get one in preparation of being on my own for a week with two small children and have one once he gets home for the same reason.  During the week, I go into what I call “turbo mode” and face life as it’s thrown at me.  I am super scheduled and exhausted but typically can make it a few days before the migraine letdown of stress. Even if I’m not worried, had a typical week and have no issues during the week of travel, a letdown migraine occurs.  Even when I think I have things handled, my body still punishes me for pushing through “turbo mode.”

Letdown migraines come from life’s many ups and downs.  A spike in life results in a spike of migraine pain.

Do you get letdown migraines?  

Tips for sleep, rest, insomnia and Migraine

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I had a horrible sleep last night.  And to add to it, we lost an hour!  Sleep is so important for so many reasons.  My body is constantly fighting pain.  As you can imagine that makes me exhausted.  Sleeping and down town time are  both forced upon me and required to recover or survive.  It’s forced upon me by extreme nausea, joint and muscle pain, the intense sensitivities and of course the  head pain.    Giving myself a comfortable place to rest and sleep is important.  Blackout shades plus curtains help when even the clock on my tv is too bright.  I have yet to find a perfect pillow I love, but I love my bed!  We have a Christeli and it is amazingly comfortable.  I get CRAZY hot when I sleep.  My husband can feel my body radiate heat.  My Christeli mattress  sleeps cooler than our last bed, it relieves joint pain, and when I’m moving around my husband isn’t being disturbed. It is difficult for me to fall asleep in general.  Sometimes the pain flutters my eyes open and my body clenches so it’s hard to relax.   I have eucalyptus hand lotion, peppermint essential oil and water on my night stand to try to relax me.  I find that I tend to breathe deeper and slower with these things.  Everyone’s preference for smells is totally unique though. Sometimes they help me, other times the smell of anything makes me sicker.   I typically take my meds, drink some water, ice, and hibernate.  I lay under the blankets to eliminate more light and sound and sometimes pile pillows on top to have added pressure.  All of these things give me the needed rest that I require.  Being in pain is so grueling and giving the body a chance to recover is crucial.   I don’t think people fully understand the need for rest, sleep, and a chance to eliminate triggers.  A calm environment allows my brain to relax after being in constant overdrive in my loud, bright, motion filled life.  I need sleep, rest, and a cave.

Migraines are NOT laziness and judgement

My Migraine Life

Oooooh laziness. I am constantly fearful that I am seen as lazy and I’m glad the topic has come up. I run a marathon and some days an iron man inside my body every day. I am a stay at home mom and I work HARD. I really think my job is one of the most under respected jobs. Then again I used to be a teacher and got paid close to nothing to change children’s lives. So I’m used to it. I am physically active all day. I carry a 25+ pound child on my hip while I do dishes, laundry, vacuum, cook, and clean. I run errands constantly getting kids in and out of the car along with carrying a purse that might as well be called luggage. I do swim lessons, library classes, play dates, art projects, playgrounds, walks and bike rides. All of this while in…

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“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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One step forward, two steps back

Several times a year, I get trapped in a cycle that won’t break (see “when everything stops working”). I was at this point last week. It had been 3 weeks of a 6 pain level but spiking often. Finally, I saw my doctor to get shots to knock out the migraine and hopefully regain some less painful days. I was headed for a long road trip with my children and family and needed to feel as good as I could in order to survive and enjoy myself. So the shots worked and follow up meds allowed me to enjoy my getaway. On the last day, however, it all caught up to me. We had moved from location to location, bed to bed, been scheduled from minute to minute and eating was far from normal. Due to driving for long distances every day, I drank less water and had less physical activity than normal. On the last two nights of our trip we also stayed in a house with a cat in which I am allergic to. We had spend the previous day in the sun and in a highly humid climate. So as you can imagine, on the last day I woke up with my eyes swollen, red, watery, and pained. My throat was closed and my entire body ached.  We then loaded ourselves into the car for a 12 hour drive home. We left at 7:30am and arrived in our driveway at 8:15pm. I literally slept, iced, and prayed myself to better heath for the first 5 hours. The migraine pain was at like a 7 and my entire body felt like an unfunctional rag doll because of the allergies and combined triggers. Once we got home, I had hoped to recover, but no luck. Back to where I was before I got the shots and in constant pain again. So I took one step forward to enjoy my vacation and two steps back to not only negate my meds that had worked but to be back in my migraine cycle.

Long gone are the days of not considering everything I do due to migraines.   Now are the days of weighing my options. So why travel? The answer for me is simple, life goes on. I can’t stop my life knowing I will suffer. I won’t do it to my kids, I won’t do it to my husband and I won’t do it to myself. Why stay home? Maybe I’d still be at a lower pain level if I had not gone on the trip, but I would have missed out. I miss out on a lot and there are some events I am willing to get sicker for. If I didn’t go I wouldn’t have the memories. I sometimes look back at pictures and can often remember how I felt that day. The best thing is that I was there. I experienced life, I created memories, I wasn’t perfect, but who is? I was able to have a fabulous time due to seeing my doctor prior to the trip and that’s all that matters to me. Am I focused on my two steps back that I took? No way. It sucks and I’m mad and frustrated, but I’m focused on everything I gained from my trip, not what I lost. I would have loved to come home and resume my life, but that’s not the reality I live.  I’m focused on taking that one step forward again. I know, from experience, that I’ll take those two steps back sooner rather than later, but I took that step and I’ll take another. Life is about baby steps. I have the pictures and memories of that baby step and I know looking back that will never be a regret.