Last year’s birthday and migraine motivation

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This week is my birthday! As I looked back at where I was last year, I was struggling but happy. I’m about the same but can say I’ve seen growth. I strengthened my time management this year and really focused on doing things that make me happier and healthier.

I started a new job that inspires me to feel better, gives me a new sense of purpose and the people there make me smile and laugh.  Being a teacher and changing lives is very motivating and the families I work with are incredible!

My Migraine Life has done a lot of great things and I’m very proud of my blog being so unique and well received. I had never read a blog when I began this journey and I’m proud that I created this community and am helping so many in my own way.

Please endorse My Migraine Life for Wego Health Awards. It’s a nice thank you for all my hard work!  Just go to the link and scroll to the thumbs up!

Endorse

I still have a lot of “bad days” and feel better knowing that on my less painful days I’m helping and teaching so many.  I’m using my good days for the good and that is the best I can do.  On those bad days…..I’ll “just keep swimming!”

Last year’s birthday post!

Chronic pain is too much for too long and too often

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The last 3 weeks I have been in a migraine cycle from hell. Hell is the only place to describe it. I suffer from chronic migraine and even this rattled me. Here’s the thing I’d like to tell you about chronic pain, it’s too much for too long and too often!

You never get used to pain. I have found ways to mentally deal with it better, to alternatively treat it more naturally and ways to adapt my life but the reality is it hurts….a lot. With my migraines, I get insane pain (on all sides) that resonate throughout my entire body like a lightning bolt that never goes away. I throw up constantly (well, my body tries but at this point my stomach clenches so hard to keep any food in me that it’s basically violent painful heaves each time I sit up.) I have auras that consist of black dots, lines, zigzags, white light flashes and tunnel vision. I clench my teeth/jaw, fists, toes and thrash my body to the point I bruise. Light and sounds puts me at risk of passing out. The list of pains goes on and on and on while the minutes, hours, days and nights pass by.

When I was in labor, my nurse was able to tell me “Your contraction is at its worse, it’s getting better and going now.” The biggest battle besides the pain is not knowing how long the migraine will last. With this last cycle, I had points that I did not see the light at the end of the tunnel. The fear of living at a level 8/9 for the rest of my life was and is my reality. After an unending migraine, I don’t remember ever feeling better, can’t do anything to find relief and no one can tell me it’s going to be better soon because they don’t know that.

In comes the anxiety and depression that most chronic migraine sufferers experience. Anxiety about doing something to make it worse, about how long it will last, about missing out on life and about what will be missed in the future. Depression about being locked in a dark room alone for hours and feeling so alone. Alone. Alone to fight my pain because no one else can help. Feeling worthless and sad that this is my life and the way it will always be. Sadness from the things I can’t do and won’t ever do. The feeling of pain being the only feeling that I feel because nothing else can enter my mind is exhausting and unfair.

In fact, everything is exhausting and unfair. Even once the pain lowered, I was exhausted. Exhausted from fighting the pain and little sleep after days and days in bed. Looking at social media was too trivial. I can’t stand seeing moms complain about their kids when my children are my inspiration for everything and give me a reason to fight! Those moms are so ungrateful. In fact, the only reason I got out of bed was to go see my daughter for one hour at her school for an end of the year reception. I had spent the entire morning heaving from pain and used every bit of my energy to be there. One hour. One hour is where I spent all my energy in one day just to make my daughter smile and to make me feel human while other women are complaining that their kids are being kids….ugh, exhausting! (*Note:  I’m planning on writing a series on how my children are shielded from these episodes….**spoiler alert** lots of help and preparation!)

Once I emerge from a cycle, I always find it difficult to enter back into the real world. The world outside of my pain, outside of my room, outside of my head. I look in the mirror and don’t even recognize myself. My face is broken out and I look so weak and pale. My list of to dos is a mile long and the cognitive damage and physical weakness make it difficult to multitask like I normally do. I have trouble with just one task and focus on that alone. The anxiety stays with me because I never know when my migraine will return. I walk on egg shells and give myself credit for doing even the smallest things.

Chronic pain is too much for too long and too often. Before this 3 week cycle, I had made it 4 days at a level 5 pain level. This was good, but 4 days since my last major migraine? It’s not like I got food poisoning and thought, “Wow, glad that’s over, I’m never eating there again.” I’m going through this dramatic traumatizing event and thinking, when will it come back? Not if, when. Will it be tomorrow once I eat a normal meal again, will it be when I leave the house, will it be when my children scream and my stress raises, will it be when I try to get my list done and push myself too hard, will it be in a few days with my menstrual cycle, will it be when the weather changes AGAIN, or will it be for no reason? It will always come back….and soon.

I questioned if I should write this post. I like to be optimistic and show my readers hope. But the reality is, I suffer. I suffer a lot. Hopefully I help many with writing MyMigraineLife but there is no cure and I live with that every day. This is not a post to make you feel bad but to remind you that you are not alone. That maybe someone has it worse and to show gratitude for everything you can do today. To remind you that you never know what someone is battling with and to be gentle and kind. And to remind you that someday it will get better. My better does not mean I’m ok, it just means I’m out of my dark room today and I’m writing! That’s better! I still have a long way to go and am very aware that tomorrow it could be much worse. All I can hope is that it gets better…..

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.

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?

Disney World tragedy and lessons I learned

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This morning I awoke to read that a toddler had been dragged into the water by an alligator from a  Disney World hotel.  I am so sickened by this.  I am so sickened by so much in the news, in fact, that reading has been a daily painful experience.  This world is a scary, sick and unpredictable place.  Hold your loved ones close!  I pray for so many today for so many reasons.

When I went to Disney World last year, I had a profound experience having the good, the bad and a migraine.  Please read my 3 piece series on Disney World and all that I learned and came away with.

Disney World

Disney world: the good

Disney world: the bad

Disney World: my migraine

 

 

Cravings with Migraine and triggers. Chocolate, salty foods, sugar and more

bad habit and craving

bad habit and craving

Sugar!

Sugar!

I have a lot of good habits that I follow every day  to address my migraines.  If I ignore the things I do to prevent them, I would probably be bedridden permanently.  So the list goes on and changes constantly but I’m diligent and try really hard.  With all the good things I do there is one bad habit that I CAN NOT break.  It is my addiction to sugar.  I’ve read how bad it is, I know how fat it makes me but I just don’t care.  Anyone who knows me, knows this about me.  My father in law has bought me shirts that say, “I’m embarrassed at what I did for a Klondike bar” and “I run because I really, really, like dessert.”   He’s also gotten me “Mama needs a cocktail.”  All of the above are migraine triggers but we all need to pick and choose our battles, right?   It’s the truth.  Although I can’t run much anymore due to my migraines, I work out, partly, because I know my day will end with massive amounts of sugar.  I know for a fact that M&Ms  give me migraines.  It does not stop me.  I have a problem.  I actually have had more than one passionate conversation about how much I love M&Ms, the different types, and how a diet coke with them is like euphoria for me.  I literally look forward to each holiday so I can have the seasonal types.  I actually heard on the radio that M&Ms are the second most addictive food.  I don’t remember what the first one was because they had me at M&Ms.   M&Ms are only the beginning of my problem though.  Chewy candy and I go way back.  I remember for my 15th birthday my friend gave me a balloon with like 3 pounds of chewy candy weighing it down.  I had an ex boyfriend challenge me to a Sour Patch eating contest.  We never had the competition, but let’s get real….I would have won.  I eat fairly healthy and if I cut out sugar I would lose weight and eliminate a trigger for myself but I just can’t.  I justify it by saying this…..I would love to sit down and have a drink at the end of a stressful day but it just makes me feel miserable at this point.  I don’t smoke, I don’t eat fast food, I don’t gamble and I don’t shop for myself.  How do I relax at the end of a day…I eat candy.   I’m triggered by soooooo many things and eliminating my one vice just isn’t a priority to me.  So what happens when I don’t have dessert and the next day I wake up with a migraine because of the weather change?  Forget that.  Give me my candy.  If that’s the worst thing I’ve done today, I’d say I’m doing pretty good.  All of this is not mentioning the cravings migraines give me.  My husband and I were sure I would be a craving lunatic when I was pregnant but I wasn’t.  I crave sugar pre migraine way more than any craving I’ve ever had.  So my cravings and my bad habit are all in the same.  Sugar!  I have tried to stop but it just gives me a headache.  Like I said, one day I’ll get there, but it’s not a battle I’m fighting right now.  What’s your bad habit or craving?  I can’t be the only one!

I’d like to say I’m going to quit. Any advice?  How do I stop something that is a pre and post migraine craving and comfort habit?  

How do I give up sugar and not feel the emotional roller coaster of cravings & emotional withdraw?

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