Difficult weekend

This has been a very challenging weekend. My birthday was on Friday, which was great, but I got knocked down with an awful migraine in the evening. Even though I got an abundance of spoons for my birthday, I was still wiped out. I have been running a fever for over a week. We have no idea why. My body is just a mystery that keeps us all on our toes. I had a bunch of labs drawn. My hematocrit has dropped to 36, which is not bad, but when it gets below 40, I get wiped out so easily. I am so so short of breath. My kidney function right now is not stellar. My BUN and creatnine have doubled in 2 months. I still have to cath myself on a regular basis. I am getting used to being out in public with my cane, but it is still hard.

My girls had a dance competition yesterday, and I really didn't want to go because I felt horrible, but I didn't want to let me girls down, so I went. I was there with my do rag, no make up, in my comfies, and walking with a cane. I am sure I was an absolute embarrassment to my girls. I am so grateful that my Mom was able to come down and help me get them ready and help at the competition. I wasn't much help. I felt pretty worthless.

Also learned that we lost a fellow migraineur. She was my age. She left behind two boys, they were 15 and 13. We don't know how she died and out of respect for the family, we are giving them space. Regardless, I carry a heavy heart and feel so sad that another migraineur lost the battle. Yes, you can die from migraines. Migraines put you at increased risk of stroke, especially if you suffer from them daily or have excruciating pain. That is why I push so hard to raise awareness. There is so little knowledge about migraines, and until they are taken seriously, we will continue to lose more and more. Sadly, across the country, there are several doctors that refuse to take a migraineur as a patient because they are so complex.

People give me crap about all my research, but we have to be our own advocate. I am very passionate about changing the way people view migraines.

I have shed many, many tears this past week. It is so hard living this life. I hate losing my independence. I hate that I can't make plans in advance. I hate that people think I use migraines as as excuse to get out of doing things. As great as it is to be home for my girls, it sucks that I can't even take care of them and have to depend on so many other people to help me.

I know this won't last forever. I keep on keeping on.

In loving memory of Amy.

My birthday!

Today was my birthday and it was such an incredible day. My husband and girls came and woke me up this morning to take me to breakfast for my birthday. In all honesty, I did not want to get out of bed. I got sick around 3 AM and my head was doing nothing but cause me and my entire body pain. But, I didn't want to let my girls or my husband down because they were so excited. I got out of bed and put my brave face on. When I walked outside, I saw the most amazing gift in my front yard.

In case you can't tell, I am crying as I am videoing. I was so surprised and felt truly blessed.

We went to Kneaders for breakfast, took the girls home, and then I had to come home and rest for a little while. After my rest, we went to the dollar move. "3 Days to Kill". It turned out to be quite different than i thought it was, but I loved it.

Even though i got an abundant of spoons for my birthday, I am wiped out.

My bestie took me to get a pedi the other day for my birthday. I love how cute and springy they are.

The view from across the street.

One of the many flower pots of spoons! I will cherish every single one until the day I die!

They even used zebra duck tape!!

My box of 600 spoons, with the purple ribbon, my most favoritest ( I know it is not a real word) colors.

The birthday girl, trying to smile and keep my eyes open.The sun was shining directly into my eyes. The flower pots were in a heart shape, I didn't get a picture of that dagnammit!

My amazing husband and I.

Love everything about this. I don't think I could have received a better gift.

Different view.

My Cefaly device came on Monday. I used it for the first time on Wednesday night. I did not want to try and use it without Rick being home. I have only used Cefaly three times, so it is too early to tell how effective it will be in preventing migraines. I will tell you that it decreases my anxiety, that alone is a "winner winner chicken dinner"! I have been filming the sessions every time, so that I can help explain what it does. I am supposed to to Cefaly every day for 20 minutes. The device shuts itself off after 20 minutes. So far, I am not disappointed just because it is helping me with my anxiety and my meditation. I film after I finish the 20 min session. I try to describe what the treatment feels like. Because the device is so new, not many people know about it yet. My Neurologist, PCP, and Physiatrist had never heard of it. They asked how I found out about it, I said by doing research. They all think it is a great idea and want me to keep them updated on how Cefaly is working out. This is a great reason why you should be your own advocate. Remember, doctors don't know everything, they too have to look things up sometimes. Here is the video from the 1st night. You can tell by the way I am talking that my head is going to asplode! 

Cefaly, the powerful tiara that gives migraine warriors super powers!

Back view.

What I looked like before I started the Cefaly.

 

After Cefaly session complete. So calm and relaxed.

Who doesn't like seeing my amazing bed head in the mornings!! LOL!

And that my friends is all for the night. I am bushed! Have a great weekend!

My epiphany!

I had an  epiphany the other day that I thought I would share with you all. You may or may not agree with what I have to say, and I am o.k. with that, but I want to share my epiphany with all of you in terms of being recognized. I don't know about y'all, but I noticed that the only pictures I tend to share on my personal page are pictures when I am feeling good, not when I am suffering from a debilitating migraine.

I got to thinking, how can I change the stigma of migraine, if I too am guilty of only posting pictures of the good days, not the bad days. I share my misery with you all, because you understand. I don't share a whole lot about my misery on my main page. I know that people got sick of seeing my page with nothing but migraine related posts. I know that some people blocked me because they were sick of seeing it, which is completely understandable. I chose to start a blog about my medical journey so that my FB page wasn't full of migraine info only. Those who want to know more, can go to my blog and learn about my journey and more about migraines. I don't know how many people read it, but that doesn't matter either. Writing is very therapeutic for me.

I decided that for the next few weeks, I am going to post pictures of me at my worst, suffering from debilitating, excruciating and painful migraines. My husband and my girls will take the pictures. How can we change the stigma of migraines if we only share our good days and not our tough days. I don't know if this will be helpful or not, but I a curious to see what kind of response I get. I feel like I am not doing myself or any other migraineurs' a favor if I don't share the bad days too. I am a little leery. I am going to try it and see what happens.

Education is KEY! Even if we hate to show our pictures and allow people to see us at our worst, we should consider doing it. All the make-up, immaculate hair, perfect nails, and designer clothes are not what makes us beautiful. True beauty lies within ourselves and this beauty shows itself by the words we say and by the way we treat others. We don't need a pity party or people feeling sorry for us. We deserve respect and we need to be treated with love and compassion, just like anybody else. CMA will never get recognition if, we as migrainers, aren't comfortable sharing our story.

Has anybody else ever thought of this? Am I the only one guilty of posting about the good days?

My blackout shades that I wear when I sleep, I especially need them during the day when I need to hibernate.

The text above is a post that I put on the Chronic Migraine Awareness (CMA) wall. Chronic Migraine Awareness is a non-profit organization that is doing everything they can to help raise awareness. CMA is a private support group for migraine sufferers. There are currently over 3600 members and I was recently made an administrator of the group. I was approached from other admins and they asked if I was interested in being more involved, of course I said yes. So, I have a job now (volunteer), but I finally have something of worth to do.
I posted that post a couple of days ago and I am blown away by the response that I got from my post. I received over 110 comments of people telling me how brave I am. I had many tell me that I am such an inspiration to them. I had many share their story of how they too are guilty of only posting pictures of their good days, not the bad days. Too many of us are too uncomfortable sharing pictures where we don't look good. I thought about this for several days, and I got to thinking (deep thinking),  how can we ever change the stigma of migraine if we as migraineurs only show others our good side, wearing our brave face. Because we are all so scared to be open and share what our life is really like, it will be very difficult to change the stigma of migraine.

I know that by doing this I may upset some people, but that is not my intention. I know that most people don't like to see the "negative" side of people's lives, they want to see the happy, triumphant moments. I know that by being more open on my personal FB page, I run the risk of being blocked by people because I may appear to be a "debby downer". I am o.k. with that. I know what kind of person I am. I can look myself in the mirror and not feel ashamed at all for the person that I am. I am one that loves to make people smile. I am not afraid to show myself in any way.

In order to change migraines from an invisible illness to a visible illness, we must be willing to share the good with the bad. We must be true to ourselves. We must be brave, show pictures and tell stories of our challenging times.

I am so touched that I have inspired others to do the same thing. I hope that you will support us and help raise awareness.

I want a little bit of my life back. I would love to be able to make plans. I would love to drive farther than up the street and back. I would love it if I could empty my bladder independently, when I have a migraine, without having to cath myself. I would love to walk without a cane. But for now, these are challenges that I am fighting. I don't know why I have been given this big trial, but I will embrace it and I will do what I can to make it through. I don't expect sympathy or pity. I don't want people to be afraid of me. I don't want people to think that I use migraines as an excuse to hide from life. If more people saw not only what my life was like day in and day out, but other migraineurs' lives as well, I think their opinion of migraines would change. Many would understand that there is more to migraine than just a headache.

I am going to make a difference. I know I can do it, especially if I have a lot of love and support to help spread awareness and educate as many people as possible.

I want to inspire people, just like this meme says.

This is a very inspirational song, I heard it for the first time when another migraineur posted it on the CMA page. I hope you enjoy it.

The song is called "Overcomer" and it is sung by "Mandisa".

A snippet of what I go through with migraines

These past few days have not been my favorite. I know that some of you get tired of hearing about migraines, but if I don't share my journey, how are people ever going to even begin how horrific migraines can really be. Let me share with you a little snippet of what occurs when I get a flare up:

• My speech is slurred, and often incoherent
• I have short term memory loss
• My face, left arm and right leg go numb
• other areas may also go numb
• I can't empty my bladder so I have to straight cath to empty my bladder
• I fall frequently, which is why I now have a cane
• I have not been able to work in a year and a half
• I can't drive
• I can't even take care of my own house and family
• I need help getting in and out of bed
• I vomit
• I lose my independence
• I can't do the things I want to do
• I can't plan my life
• I have to cancel plans because of migraine
• I get allodynia, where even my hair hurts
• I am exhausted, but can't sleep because the pain is so severe
• I have to hibernate for days, sometimes
• I show my face for Dr. appt's mostly
• I miss several family functions
• I am in excruciating pain
• I have 2-3 days a month that I can function fairly well
• I grieve me, I grieve the person I used to be and the person I want to be.

I did not choose this life, but I make the most of the life that I do have. I have tried to make myself invisible my entire life. When I heard this song, I shed so many tears, but it was so healing at the same time. But instead of hiding under the bleachers at lunch, I was the one hiding out in the library.

Pain Pain Go Away

14+ today for sure

Today has been one of the worst migraines that I have had to endure in a very long time. I have been in so much pain that teeth have been chattering and my body has been shivering. When I get a bad migraine I spike a temperature and I break out in hives. This migraine isn't like me typical migraines. This one goes across my forehead and shoots pain to the occipital region. I hurt head to toe, even my hair hurts, which is called allodynia. It's hard to explain it unless you have actually experienced this symptom. I can hear my heart beating, and it is too loud. I can feel the blood pumping through my body and is it painful. 

Emotionally, it can be so very hard when I have such a great day followed by a miserable, painful day. I wish there were some way I could control these attacks, so I could at least plan my life. But for now, it is what it is and I just have to take it one tiny step at a time. 

I am going to bed now. I'm praying for a little relief so I can get a little bit of sleep. 

I don't always feel strong, but I have no other choice than to keep on keeping on. Things will get better

So much truth to this.

Such a struggle

Yesterday was a pretty great day. I was able to spend some time with my family. I got to see my cute little nephew, Cohen, whom I have only seen like three times since he was born. He is 4 months now. I hate that I haven't seen him much, but they live up in Ogden and 98% of the time, I cannot drive.

I woke up with a pretty bad migraine, but I opted to get out of bed and try to be productive. I know I should not feel guilty, but I do. It is so hard for me to ask for help and to receive help. My Neuro-psychologist told me on Friday that I cannot do no more than two hours of activity at a time. Then I have to rest for two hours. He says that if my body says it is ok to continue, then I can, if not, I should not push myself. He said it will actually do more harm than good by trying to keep pushing through the pain. He made me promise him, so I did. But, still, it does not make it any easier for me and make me feel any less guilty. He says if I feel guilty or if people get upset because I have to stop and rest, then to send the guilt and the unhappy people to him. He says he is doing this for my own good, this is the only way I am going to get better.

Not feeling guilty is one of the hardest things for me to do.

I was able to get some stuff organized, but then I just had to stop. My body said no more. I have had to straight cath most of the day. Last nights dinner did not taste as great coming out as it did going in. But these are the things I struggle with almost every day of my life. I do not blog about this for you to feel sorry for me and think that I am asking for pity. I started this blog to help educate people about how difficult it is for one to live with debilitating migraines that cause excruciating pain, not in my head, but throughout my entire body.

Sometimes when I have a flare-up, I spike a temp, which is what happened today. I have been feeling pretty rotten. I have no idea why I get fevers. I also break out in hives when I get migraines. My legs turn purple due to Reynaud's Phenomenon. I have to force myself to eat because of the gastroparesis and migraines. I have my great days, good days, not so great days, and bad days, but I keep on pushing on.

People ask, how do you do it? Well, what other choice do I have? Sometimes I take things a minute at a time. I can't worry about what the future holds. I have to focus on the here and now and what I can do to get me back to being myself.

All day long I have just wanted to cry. I am so emotional. I have a lot that I am dealing with and sometimes it is just too much. I had an anxiety attack earlier when the migraine pain became so intense and I was trying to figure out our finances. Life would be so much easier if we didn't have to worry about money. But somehow, someway, things always work out. I am feeling okish at the moment. Still in pain, but it has decreased and I can see, so I wanted to do a quick post before heading to bed.

Most of the time I don't even know if anybody even reads this, which I don't even care. Writing about my journey, how I am feeling, if I am progressing, voicing my concerns and thoughts is very healing for me. I write for myself. Writing is good for my mental and emotional health.

My Cefaly device should be here tomorrow. I am interested to see how it works and very curious as to whether it will help or not.

I wish I could plan my life, but I never know when I am going to have a flare-up. A huge trigger is any shift in barometric pressure. I can feel it before the storm even rolls in.

Some days I feel so inadequate and I feel like my life has no meaning. I know that it does, but when you aren't able to do much on your own, it is very hard not getting depressed. I find it very difficult when I grieve the old Amber. She is still here, she is just buried amongst all the pain.

I may be a zebra. I may have some rough days. I may have some down right shitty days (sorry for swearing), but I always find the strength to keep going and never give up. I always try to find things to smile about. I try not to complain.I know that there are so many people out there far worse than me. Every single one of us have our own battles.We can let our battles define us, or we can try to find solutions. I have chosen to look for solutions. I am never going to give up and I am never going to stop smiling.

Wild, Pain Roller Coaster of a Week.

Gosh, I don't even know where to begin. This week has been a roller coaster of emotions. I had a really bad migraine last week. I went to the infusion center on Tuesday for migraine treatment and I slept 3 days straight. I had to be woken up to take my meds and use the facilities. I was in so much pain and couldn't get out of bed without the projectile vomit. These are the migraines that I wouldn't wish upon anybody.

After hibernating for three days, I felt ok-ish by Saturday. Sunday, the migraine and gastroparesis were back with a vengence. I was to the point where death sounded better than to continue to live with this pain. When I have pain that severe, I also hallucinate. I had a man standing right next to me in bed and he looked just like my Uncle Van. It was comforting having him there, whoever it was. I called Rick, because he was at work. He told me to take a dilaudid and try to get some more sleep. I took dilaudid and phenegran and woke up a few hours with the pain level decreased, but not gone. I am ok with that. As long as I can function I try to fight through the pain.

Monday  was a pretty good day. I was in the postdromal phase. This is also referred to "migraine hangover" because you still feel pretty run down, exhausted, and still fighting the pain.

Tuesday, oh how I loved Tuesday! I was pain free. I woke up without pain. I was able to drive. I was able to run errands. I felt like a normal human and forgot what it felt like not to be in pain. The following video is one I made on Tuesday, it was intended for my CMA group, but I accidentally loaded it on my own page. I thought, I could remove it, but then I decided to leave it up. Why? Because my motto in my life is dance like nobody is watching and sing like nobody is listening. This video is a perfect example. I was doing absolutely horrible moves, but I had so much fun and it brought smiles to so many.

Happy Tuesday Dancing to Tiffany "I Think We're Alone Now"

I was so hopeful that Wednesday would be a great day also, because my major triggers (full moon, shift in barometric pressures, bad smells) were no where in sight or smell when I went to bed.

Good days play tricks on us. I got hit with a monster migraine while I was cooking dinner. I was on the verge of puking. Mallory, my 7 year old, said "Mom, we are not going to do this! You have been having such a great day, I don't another migraine to knock you down. What can  I do?" I reassured her that I took my anti-nausea medicine. She ran and got me a tapioca pudding and made me sit down. She said she would finish dinner. I just had to tell her what to do. (we were making green been tater tot casserole), she made me take migraine meds and told me to go to bed. Rick (my husband) was home. I took Aleve andAxert and went up to bed. Mallory brought her pillow and blenakets into my room and laid on the floor next to my side of the bed. She says, "i will stay awake until I know for sure that you are ok". I gave here loves and did the bad , dreams, bad dreams so away". She went right tosleep;

I have a lot more to add, but I can't even hold my head up.

Today is Saturday, April 12 2014, I am adding to my post that I started the other night before a migraine kicked in. I can feel one coming on now as I sit here typing. There is a storm rolling in, which is always a huge trigger. Any shift in barometric pressure triggers a flare up. I took Aleve and Axert and will hopefully make it through this post before the bad verbage, spelling, mistakes, and everything else kicks in.

So, after I went to bed to Tuesday night, Mallory stayed in my room. She slept on the floor right next to my bed so that she could help me if I needed it. She tears at my heart strings. She is so concerned for me and tries so hard to take care of me and make sure that I am o.k. I feel guilty, because I should be the one caring for her. I am blessed to have her and Savannah. Savannah helps with making sure they both get something to eat when it is so difficult to even get out of bed. I have a fear that my girls are going to grow up resenting me because I was sick all the time.

Wednesday morning came and I was much worse than I was when I went to bed Tuesday night. My entire body was pulsating. I was covered in hives. Light was bugging me, which is unusual. I don't have many migraines where the light bothers me. Every little noise was unbearable. I hurt. I was miserable. My right leg was so weak. I had to straight cath. Every Wednesday is couples therapy followed by Mindful Meditation. Originally, Rick and I were going to drive separately because he had to go to a meeting for work, and I was going to meet some dear friends for lunch, whom I had not seen in a very long time. It was evident that I was in no condition to drive. So Rick drove us to therapy and my friend, Jae Lynne, said she could come to the hospital to pick me up for lunch.

I was really depressed because this was the first day that I have had to use my cane. Even though I knew the day was coming, I just wasn't emotionally and mentally prepared to use it. I just wanted to curl up and cry, but I was not going to let Jae Lynne down again. I had cancelled plans with her so many times. I have to say, it was so hard for me emotionally, to be out and about and having to use a cane to get around, especially since I was feeling so great the day before. I had ordered my cane online. It is a zebra and it was hand carved in Kenya. I figured if I had to get a "walking stick" I was going to get one that made people smile. It did not make me smile this day.

My first day using my cane, headed to therapy.

Jae Lynne was outside waiting for me when I walked out the doors. She came running to me and gave me the biggest hug. We both just cried. I am crying right now just reliving the moment. I was so touched that she still wanted anything to do with me after all of the times that I cancelled plans. We went to lunch at Cafe Trang, one of my favorite places, and I was pleasantly surprised to see Becky Smith there too. As crappy as I felt, it was so nice being able to have lunch with them and interact with somebody other than medical professionals and people from counseling. We didn't have near enough time to catch up on everything, but I loved seeing them and being able to spend some time with them.

I came home and decided to sit out on the deck and soak in some sun since my vitamin D level is critically low. I am taking vitamin D supplements, but I figured I would sit out there for a few minutes. Mallory decided she wanted to join me. I was eating my tapioca pudding, I have to eat it when I take my meds, to keep my GI tract happy. We were enjoying our pudding, when all of a sudden my chair folded up on me!

You can see both Ozzy and Cher went after our pudding. Mallory and I were laughing so hard!

Don't worry, I survived, and I think it is just what I needed to lift my spirits.

Thursday came and I spent a huge chunk of the day in bed, because I was fighting pain and vomiting.  I am wearing the do rag because my migraine hurt so bad, that my hair even hurt, it is called allodynia.  I still managed to make it out of bed later in the afternoon.

Sent this pic to Rick when he was sitting across the room from me, and the message said "I Love You!"

 I had to go get my new glasses and contacts, because they were in. Rick drove me to eye doc. Savi and I decided to do a few more photo ops with the cane since I was more stable as far as my emotions associated with the pain goes.

Trying to balance on weak leg, to help strengthen it.

Another attempt at balancing on weak leg.

The wind started to blow and the mail was starting to blow away. Amber to the rescue!!

I might get knocked down, but I will always get back up. Friday was a pretty good day. The girls didn't have school. I spent a couple of hours on the phone with my therapist because Disability is wanting more information. My girls were playing with their friends. I just tried to keep it a low key day. My therapist said that I cannot do any activity for longer than two hours He said I need to stop and rest for 2 hours to allow my body to regroup. he told me that I need to listen to my body and that I need to stop pushing myself through the pain. Pushing myself only makes my recovery that much more difficult.

CMA Bomb Squad made my day and allowed me to let go of my brave face!

I rise, I fall, I make mistakes, but I will not give up!

I should have posted this a few weeks ago, but I just haven't been able to sit down and write this post without crying and being over come with emotion. About a month ago, I was struggling. I was so depressed. I was grieving the person I used to be. I was grieving because I was feeling so alone. I was so scared. I have been faced with many challenges this past year, more than just migraines. Most people don't really know what I suffer day in, day out. They only know what I choose to share or if they happen to see me while I am at my worst, they understand a little better. Mostly it is my husband, my girls, my Mom, and my bestie, Jamie, that see me suffer the most. Others see me suffer, but they usually see me with my brave face.

A few weeks ago at my daughter's dance competition, my right leg went numb, which has been happening more and more, and I took a bad fall. I felt awful. We had to leave the competition early because I was going down hill, fast. Luckily, they were very understanding.

I got home and went to get the mail. I opened up my mail box and it was chuck full of cards addressed to me. These cards came from all over the world, Germany, England, Canada, U.S. etc. All of these cards were from the Chronic Migraine Support group that I am in. I started to cry before I even opened the cards. As I read each card, I cried harder and harder. I couldn't believe that I had all this love and support from people all around the world. I was over come with emotion, so was my husband. I finally took my brave face off, I curled up in my chair and I cried for over an hour. I let it all out. I sobbed and sobbed and sobbed some more.  How was is possible to have all this love and support from people that don't even know me? Receiving all of those cards, meant so much to me. I had love from people I didn't even know. My husband was so touched and he is so grateful that I found CMA (chronic migraine awareness). I got bombed! by the CMA bomb squad. Meant so much to me.

I am a Migraine Warrior and I will never give up the fight!

As I continue to fight, I have the support of my CMA family, that truly understand what I am going through. Others try, but it is hard when you can't comprehend living daily with chronic pain. CMA group has been a God send to me, and they have helped me in so many ways.

I am now an admin for the CMA group and I am actually doing something of worth, even though it is all volunteer work. I finally have a purpose. I can't work in the NICU, which I so desperately miss. I take care of my family the best that I can. I do what I can to make it day to day.

My cane came a couple days ago, so I now have an assistive walking device. I still have to straight cath. I still live with excruciating pain. I make the most of each day I have. My family knows how much I love them. I don't look sick on the outside, but on the inside I am broken. I am so broken they don't even know what to do for me. I am a zebra. I am determined to make a difference in the migraine world and change the stigma of migraine.

I've got this, and I will keep going!

I wouldn't wish this pain and suffering on my worst enemy, nor would I choose this life, but this is the life I was given. I will make the best with what I have. I don't take the little things for granted.

I am so grateful for all of my friends and family that have been here for me along the way. This past year and a half, have been anything but easy, but I keep on keeping on. I still do what I can to bring a smile to another's face. I try to be positive. I have my days that I am negative and I want to say F it all, but I don't.

I just have to say how grateful I am that I found the Chronic Migraine Awareness Support Group, were it now for them, I can't guarantee where I would be. They were there for me at the right moment. I found them by "chance", but I was meant to find them.

I found this in a magazine at the Neurologist's office the other day. Where do they get 72 hours? I have had so many migraines that last well beyond the 72 hour mark. There needs to be so much more awareness and understanding about migraines.

Life's a Dance

If you know me well, you know that I love to dance! Dance and music are huge passions of mine, they are my therapy, they help ease my stress level, and overall music and dance make me happy. I love to be happy, even in the most dire situations, I always try to find that little snippet of positive hidden beneath the stress, burdens, hurt, and pain. I try to focus on the positive instead of focusing on all the negative things. I know that I am not perfect at this. I know that I have my days, where I too say, "woe is me, why me?" I might complain about it, I might cry at times, but we all have our days. 

Voicing my "woes" is healing for me. I don't like to keep things bottled up. I like to talk about whatever is bothering me. If my issues involve a person, I like to talk to the person directly and try to get it taken care of. I don't like to hurt anybody, and if I know that my words or actions have hurt somebody, I feel terrible and I try to amends so there are no hard feelings. If my woes are my health, I speak up because I want those that are around me and/or know me best to know what I am going through. I don't tell them because I am complaining and want them to feel sorry for me. I speak about it, because I want to educate them so that they will know what to do when I have one of my "flare-ups". There are times when I get an acute migraine attack I become extremely confused, I slur my speech, my words don't make sense, I become disoriented, and parts of my body go completely numb. Many of these symptoms are very similar to a stroke. I don't want my acute migraine attacks to go ignored, because what if I really am having a stroke. I have educated my children and husband how to check for stroke. 

As I have stated in a previous post, I keep a copy of all my information on the fridge, so if they ever have to call 911, they can give it to the paramedics. The information contains my name, date of birth, height, weight, medications I am taking and for what reason, allergies and adverse reactions I have had in the past, my blood type, my emergency contacts, a list of all my medical providers with phone numbers and addresses as well, detailed medical history, and a list of all my past surgeries. Is it a little over board? Maybe, but if this will help them narrow things down much quicker, it will benefit me as well as those who are trying to help me. My girls know that if we are the only ones home and they have to call 911, they give that packet to the paramedics as soon as they arrive. I am a "what if girl" and I always like to be prepared. I have a back-up for the back-up, just in case.

Anyways, I share this information because it might make a difference. I know that people get sick of seeing things on my Facebook page about migraines, part of the reason why I started this blog. More often than not, I post information to help spread awareness and education. People may say that nobody reads my post, and maybe they don't, which is fine. But, what if one person reads a post and that person learns something that will benefit him/her. What if the information I share benefits one person? Then all my posts, blogging, meme's, etc. will not have been for nothing.

If my journey can help even one person, then my journey has not been for nothing. I thought I knew a lot about migraines before I became "chronic", but looking back, I was pretty naive. I had no idea that migraines were a very complex neurological disease, that the medical world knows very little about. I spend a lot of my days doing research on the latest studies and such, and if my research helps one person, then I have not wasted hours of research for nothing. Why bother? I bother because if only one person becomes aware of how debilitating and painful migraines are, that is one more person that is now aware. I will make a difference in the migraine community, even if I only help one person. I am not suffering in vain. I have things to learn, I have things to share, and I am NEVER, NEVER, NEVER GOING TO GIVE UP!!! I will sing, I will dance, I will write, I will speak, I will do whatever it takes to change the stigma of migraines and spread awareness!