Reflections

Every now and then I like to reflect back on my life and evaluate what has happened. It was about this time last year that becoming more active in the awareness gig was more and more important.  I felt such outrage when I heard about fellow pain pals needlessly suffering.  The ignorance of the medical community as well as our peers made me see red.  I was frustrated with myself and with the fact that it was clear that I was only getting worse, and getting back to work wasn't an option.

There was a time when I considered myself a realist. That meant that not only did I see the glass as half empty, I fully believed that what was left would be taken away. Expect the worst and hope for the best was my philosophy.  It worked for a while.  When my niece died from SIDS, I needed to find some way to deal with it.  Being a realist wasn't helping me cope.  There had to be a reason for this, some justice or a bigger plan.  If that wasn't the case life was just not worth living, which is how I felt about it.  This taught me to start looking for the good in everything, including the death of Katherine Mary.  I saw how her life touched others and the ripples from that touch, even though she was only seen alive by a few of us.  She lived 16 hours and in that time she changed lives, and maybe still since I’m talking about her now. I looked at all the good things that came from her life and how it changed me.  I've always loved the movie “It’s a Wonderful Life” because it showed how one life touches another and how a simple act of kindness can mean the world to someone else.  This was the real life version of that.  I looked at my life then and saw all of this.

Flashback to 2009: that was the year I found Facebook.  I had just resigned from my job as an instructor at the dodo, and I mourned that part of my life.  I cried when I realized that I was no longer that reliable person; I felt horrible to let my sensei down. That wasn't who I was as a person.  I have always loved to help people, and now not only was I not helping I was being a hindrance. 

I had found Facebook though and with that came friends from HS.  One of them happened to be watching the news and saw a news clip on the medical section about this device being used in clinical trials for chronic migraine, so she thought of me.  I got the information and called the next day.  It was a Friday.  I spoke to Maria the nurse assisting with the study and she told me that one of the conditions of the study is that I would have to stop Botox.  As it happened my insurance was being an ass and denying it, so fate made me able to qualify.  The down side was this: there was a possibility that I could be in the placebo group, and that meant 6 weeks without anything.  My pain was already off the charts.  Botox was helping significantly with the muscle tension and pain I had in my face, head and neck, the thought of life without it was terrifying.  I told Maria I would have to think about it, but I would let her know by Monday.

That weekend was one of the longest weekends of my life. I needed help. I was desperate enough to try an experimental surgery, but the time without any meds to assist and knowing the pain I would be facing terrified me.  On the other hand there was that chance I wouldn't be in the placebo group and I would get some relief. I struggled back and forth and was not going to do it; I decided that the pain was not worth it.  Then something happened that I hadn't ever considered: my daughter got her first migraine.  That changed everything.  This was not about me anymore. This was all about her.

There was no way I could leave this legacy of pain to her. I called Maria and said I was in.  This was a way to help myself and thousands of other people, and to be proactive about finding help for my daughter.  Fate was with me and everything flew through.  All lights were green.  I had my first surgery March 30th.  I even felt great after the surgery. I had really good pain meds. If I hadn't had staples in my chest I would've felt like I would've gone to the dodo.

That didn't last.  I went to get programs for the newly implanted device. My doctor didn't do external trials at this time so there was no way to tell what would work before surgery. It was horrible; the leads weren't deep enough and it was like being stabbed with a thousand pins all over the back of my head, and I could only use it sitting a certain way and only for a few minutes. It was clear that another surgery was needed to fix it. So in June I had another surgery to put them in deeper.  It made a huge difference: clearly I wasn't in the placebo group.  I went and got a few programs and I improved.  September came and so did the evidence of a staph infection, which meant another surgery. The whole thing had to be pulled out.

With each surgery I was given the option to opt of the study.  They felt awful that I had to go through all of this, including having to shave the back of my head now for the 3rd time.  They completely understood if I wanted to be finished with the whole thing after all I've been through.  I again thought of my daughter, my own pain, and then all of the people I could help. I had six weeks to think about it. During the time that I had it from June through August, did it really help?  Was it worth going through all this again? They would be doing it on the other side of my body so that meant more scars, two on my chest where my battery was and would be.  As the surgery date approached in November, each day I was more and more sure, that YES it was worth it. 

From that point on I wanted stims for everyone! I had a much more successful program. It has been running for 3 years. I believe that out of the group I was in of 150 people, mine was the only problem. They were stunned that when the stim was turned on that the relief wasn't instant.  This just dawned on me last month.  I did realize in July, during my trip to Baltimore and the Migraine in the Mall event, that I had achieved a level of pain relief that I had never had before.  Finally my insurance stopped being difficult and I had the coverage and dosage I needed, and my meds and the stim had brought me back to a place I hadn't been in 10 years.

My kids have no idea who I am.  They don’t remember a time when I wasn't sick and they have had to learn how to live without a mother for the time it took to get to this point.   I knew three years ago that this thing was going to be huge and if I could do anything as far as advocacy it would be because of this device.  I have to laugh when people tell me that it seems to them that lately that I've been "stim, stim, stim." There has never been a time that I wasn't "stim, stim, stim." This isn't a cure, it is just a way to deal with our pain.  It is the first step in the awareness that there is a problem and that we need the research to find a cure.  I don’t want my daughter to have to become chronic before she can get help and then have to have a stim like I have. 

Technology evolves so fast that in six months your phone is outdated.  In the three years that I've become active in the migraine community and I've made some close friends.  I knew that they could benefit from this type of surgery and all this time I searched for a place like Advanced Migraine Relief and Treatment Centers to be able to bring that relief to us.  Well, they found me because of the ribbon I had created less than a year before to help raise awareness for Chronic Migraine

! 

So here I am three years later and I've now formed a Nonprofit Organization. The ribbon has just had its first anniversary.  The support group that only last year was a small chat group to escape the discussion of episodic migraineurs, now has about 700 members.  The public page went live in November and now has close to 1,700 people. What started out as a way to save my daughter from this existence, has become my life’s mission. I’m not giving up until she has better choices than we have. My grandchildren will know that migraines were something that kind of sucked to have, but they don’t need to worry about them, so next topic.  Chronic Migraines will be the new Polio. 

I have done what I set out to do in starting to bring the stim to those that needed it. The next step is bringing about awareness.  We need to educate the medical and lay person that this is not a headache. If it were easy to treat we wouldn't be suffering. There is no joy in this life, there is only suffering and agony. Until there are better options for my daughter and her children I’m going to keep on going. The bonus is that along this path I get to pick up those who need relief and bring them along with me. 

Sharing treatments that have had success in relieving my pain, as well as things that have worked for others, will always be a part of CMA. Helping people find options for themselves is so incredibly important. When before I looked back at the things that were, now I see that the what started out as ripples are quickly becoming waves is something I would love to share as well.

Ho Hum

Do you remember a time in your life when you wanted to be special? For me it was when I was a child. Being one of six, it was survival of the fittest. Whoever needed the most attention was the one that got it. When I remember telling my father about my first migraine--what was happening to my vision and how my hand was numb and I was partially blinded--his answer was to give me an aspirin and tell me to lay down. If that were happen today, we would be rushing our kids to the hospital!! 

Two of my favorite quotes are "be careful what you wish for" and "you don't always get what you want, you get what you need". I got my wish in an unexpected way. I became special in the sense that the doctors couldn't agree as to what was wrong with me. Having to make visit after visit to various doctors became tiring, and we kept finding nothing. So I kept living with the pain.
Around the pain of the migraines, my "superpowers" really showed themselves. I could predict the weather based on how my head felt. I was like Storm from X-Men, but nowhere near as fit. Let's not even discuss the costume! So I wished to be special and I was. But I didn't want to be special anymore, I just wanted to be pain-free.
After years of struggle with doctors and medicines I have found a combination of things that help me with my pain. My "superpowers" aren't as strong, but neither is my pain. Now for the first time I'm happy to be the simple person that I am.

There is nothing special about me being able to achieve pain relief. It is there for all to have; all you have to do is want it. I'm not saying it is easy; it took me years of struggle to achieve relief--but with the right support you can get it. Don't let yourselves suffer. Don't let the medical field tell you how to feel and never accept the pain you are living in. There are so many things that Chronic Migraine aggravates; relief in one area could mean the beginning of healing in others. Everyone needs to stand up for their right to live pain free. We should be happy: there is nothing happy about pain.

Beyond Survival

I went to Baltimore in July this year. But it gets better. I went with my daughter...and I had the chance to meet up with another member of CMA (Chronic Migraine Awareness - NOTE: we need a link to something here!!)).

We were there to have our first out-of-state event in an attempt to bring Awareness of our condition to as many people of we could. Our mission was a success, but I also got something that I didn't count on...  Something that I thought I lost... Me! I found a little bit of myself that I didn't remember I had.

And it didn't stop there, because I also found out that I actually like my children.

Saying that I like my children may sound like a horrible thing.  How could someone not like their own kids???? I love them; I would give my life for them.  I am dedicating my life right now, in part, to making sure that my daughter (and my son, though, fortunately, it appears he isn't "blessed" with migraine) is not left with this legacy of pain. I love them, but sometimes, when I am feeling at my worst, it really isn't easy to LIKE them. It isn't easy to LIKE anyone...or anything. I realized that not liking my children was yet another part of my disease. A part that I can't imagine ANYONE being happy with. That I can't imagine anyone could possible like.

I realized that my body was telling me that I needed to be selfish in order to heal...but...

Nature is so smart.  It makes sure that we know what we have to, in order to survive.  The most essential of those things is the will to live.   If exposed to extremely cold temperatures, a body will consolidate and make sure to protect the trunk of the body and all its vital organs (this actually shows up for people with migraine as the co-morbid problem of Raynaud's Syndrome or Phenomenon). Fingers get cold. Even frostbite can ensue, all because of how one's body deals with "life." Things like arms and legs are just a luxury as far as Nature is concerned.  

It dawned on me that the same thing happens to us mentally.  When things become too overwhelming for us mentally, we shut down, find ways to cope, do what we need to maintain our sanity.  All of this is in order to survive.

Survival is a selfish thing.  It doesn't care if you have someone that you need to take care of or that you have any responsibilities.  All it cares about is having you continue on.  So like a good electrician, when there is too much power being drawn from the power source, things have to be shut down.  It is Survival Mode.  The thing is, the Survival Instinct doesn't send out notices; it acts unilaterally from the wants of the rest of the body, especially the psyche.  We know that there are bills to be paid, laundry to be done, errands to run, and, of course, family.  This is one of those things that draws a lot of power. What does the electric company do? They reduce the load, shut down systems. There are rolling brown outs.   That is what this disease does to our bodies.  It tries to share the load.  There is only so much energy to go around.

Relationships are a lot of work; it doesn't matter who it is with.  Nature knows this. It keeps us isolated in order to preserve energy. It shuts down our ability to communicate. It closes off our get-up-and-go...and our ability to do anything. We no longer have the ability to do anything, since all of our energy is focused on our ability to simply exist. To breathe. The only thing the disease can't reach is our mind.  

Nature really doesn't have to do anything when it comes to the mind.  We do that on our own.  We feel guilt for things we aren't doing. If we had something more visual - like polio - we wouldn't put the pressures we do on ourselves.  Unfortunately, this is, in part, because so few people actually recognize the fact that we hurt. That we are disabled. We push through the pain; we push through past the point that even nature says is acceptable, but that isn't enough because it doesn't match what we used to do when we "had a life," when we were doing more than just hanging on to what life was.

Let yourself off the hook!  There are things you can control; there are things you can't. We can't control what the disease does to our bodies, but we can chose not to let it win.  Nature has its own agenda. You have the will to live. What you do with it is up to you. If you want to survive emotionally and physically be like nature and find a way!!

"Do not go gently into that good night"

http://www.liebreich.com/LDC/HTML/Various/Thomas.html

My next trip will be to Houston, Texas to meet with Dr. Chapman and the people at Advanced Migraine.  I didn't know life could be like this again.  Stay tuned to see what come up next

http://www.chronicmigrainehelp.com/breakthrough-procedure

Be sure to check out our website.  We will be updating it often and now will be offering live chat on Wed nights.

http://chronicmigraineawareness.com/

This one goes to 11

What makes having chronic migraine disease different from having episodic migraines? People who have chronic migraine disease suffer from 15 or more migraine days per month a month, lasting for 4 hours or more. That means that each and every month, at least half of the time you see these people, chances are they are in extreme pain.  But, really, this is just the tip of the iceberg. This definition says nothing about what living this type of "life" can mean.

When I was first diagnosed as chronic in 2003, it was really just putting a name to what I already knew. At that time, I had high hopes that it was the beginning of feeling better. In reality, what happened was the start of months, month after month, of doctors telling me "we" would this medicine or that therapy and see what happens.  At that time, I was still able to push through, go about my life, continued to train in martial arts and do all those mom things.  As time went on though, this became more and more difficult.

People don't realize just how hard it is to "push through the pain," but it's hard...so hard. By 2009, I had to quit doing the thing I loved most, martial arts.  Next to my family, Kempo Martial Arts was my biggest love.  I had found something that gave me joy, and now it was becoming impossible instruct classes; it was equally impossible to even take classes myself.  

I had always been that reliable person.  If you needed something I was there, but now I was no longer that woman; I had become less reliable.  Chronic migraine took my job, and my enjoyment of life. Also, because it has become more difficult to drive, due to pain and auras.  The medications that were tried did nothing but pack on the pounds. I may have worked hard at keeping them off, but the medications made short work of that. This is what being chronic means...that, little by little, your life is stolen from you.  You are no longer the person you once were.   

Now, we add the pain!! Pain is so subjective. We are given a pain scale numbered 0-10. Zero means no pain, 10 is the worst pain you've ever felt.  I used to compare it to child birth - being I wasn't lucky enough to have an epidural, I felt it all. Back in 2003, my daily pain, according to this scale, was about a 4-6; by 2009, it was 8-10 DAILY.  It was so bad that I agreed to be a part of an experimental treatment for a peripheral nerve stimulator (it is soon to be approved by the FDA, and similar devices are already being used).  

Even this isn't enough to describe what being chronic means.  At some point, we begin to realize that how we once got by is no longer good enough.  We can no longer push through, because now the migraines push back, and we pay for it with more pain.  We actually go through a grieving process, mourning our old lives and who we used to be, what we used to be able to do.  Support for us is needed now more than ever, but instead, we are often treated as whiners and malingerers - as if we wouldn't want to do anything and everything in our power to NOT have this happen to us...to find a way to end the pain.  

But back to that pain scale.  Anyone living in chronic pain, any kind of chronic pain, uses this scale.  Some people will say they have never had a 10, because they can always imagine something worse.  This maybe true, or it could be a way of coping/denial that things aren't really that bad.  People that are severely, or intractably chronic sufferers, will tell you that there is no doubt that they have experienced a 10.  Often we feel that 10 doesn't even begin to express how agonizing we feel.  What comes to mind is the scene from "This is Spinal Tap".  We need a scale that goes to 11. Or more. Because we HAVE been there.

For us there is no doubt that the pain we have is a 10, and we PRAY that there is nothing worse than this.  Everyday we wake up to experience and put that 10 to the test.  There is a great blog called Hyperbole and a Half...she came up with an incredibly good pain scale, and believe me, some of us find it so much more appropriate when dealing with real pain on a daily basis.

There are many of us that LIVE AT 10 DAILY!!!!!  Their doctors tell them they don't want them to have pain medications because they are addictive, or because they (the doctors) don't believe in them. Imagine now being faced with agony, an 11, every day.  There is no life for you.  You cannot participate in the simplest things. Sitting at the table for a family meal is often quite beyond you. Really, all you can do is cry because of the pain and knowing it isn't going to get any better for you.  Tomorrow will be the same, and the day after that, and so on.  Life becomes bleak, and we mourn over and over, the life we used to have.  We dream of the days we could push through the pain.  We wish for death just to have an end to the pain.  

In 2004, my family took a trip to Las Vegas.  I didn't know at that time that change in air pressure and weather were my biggest trigger.  Our plane was caught in a cloud to cloud thunderstorm.  The Flight Attendant was strapped into her seat and said it was one of the worst storms she had ever been in.  I was in agony.  I wished that the lightning would hit the plane and kill me.  My husband and children were with me on that flight, not to mention all the innocent people there as well.   I didn't care!!!  I can not convey the horror of the type of pain that would make me wish death on those I loved the most!!!!  That is my 10.  How can anything be represented by just numbers, when words aren't enough to describe it???

I understand the need to have parameters to measure pain. I also understand the need to regulate drugs and prevent drug abuse. However... When it comes to being chronic and intractable there needs to be more understanding.  Yes, we are drug seekers, but not in the way you think.  Drugs don't get us "high," they go to the pain. Mostly. They address the pain. Incompletely. But they make it just a bit better. We want an end to our pain.  I have been one of the lucky ones.  The experimental stimulator has done wonders and brought my daily 10's to 6 1/2; with Botox, there has been more improvement, a 5, but that doesn't mean I'm still with out pain.   There is a whole other level of pain in my head, aside from what they are treating at the surface.  Migraines can move.  Just because I'm not feeling them in my head, they are still effecting my body. There are still feelings from the auras, prodrome effects, the hungover feeling, lethargy, and more.  I'm not "better" just improved. 

I don't know that if I will ever be "better."  I can't give up hope that I can have some kind of life again. As of now, I don't go anywhere other than my cave...aka the laundry room....it is the darkest and quietest room in the house.  This is where I spend my days, eat my meals, and live my life when I'm too sick to move. I continue though, thanks to the availability of social media, to try to raise awareness in the hope that my daughter doesn't end up with this life. 

http://www.youtube.com/watch?v=F7IZZXQ89Oc

http://hyperboleandahalf.blogspot.com/

http://www.migraine.ie/index.php?id=161




I am happy to announce that will now be working along with  Advanced Migraine Relief and Treatment Center, LLC (AMRTC) to help raise awareness and help people get the help the so desperately need 

Isolation

One of the hardest things to convey to people (aside from the daily agony) is how isolating this life is.  For an adult, it is bad enough, but most of us that are "chronic" started our suffering as children and teens.  If there is little understanding for us, as adults, there is none at all for children and teenagers.

We all want to belong.  As teens, it is especially hard. They're already struggling to find out who they are, learning to become independent, to make the transition between childhood and life as an adult. They're very influenced by their peers at this age - what others think or say about them can be lead to elation...or devastation...  Children can be very cruel in their comments (a trait that's all too often learned from their parents).  Now imagine that you are 16, and no one wants to bother with you because you are always sick with an illness no one can see...an illness that sometimes even your family doesn't understand. You can't participate because the added activity makes you want to throw up, makes your head pound, makes life impossible......as if it wasn't bad enough to have to give up your youth, you have to give up friendships, too... The teen years are difficult enough without adding in chronic migraines. Chronic migraines are debilitating enough without adding being a teen.

The world is a hard place.  That lesson shouldn't have to be learned at such a young age.  Please check out the blog of Caitlin, a high school teen, trying to deal with life while suffering from chronic migraine.

http://closetowhaticantcontrol.blogspot.com/2012/05/and-repeat.html

Welcome to Chronic Migraine Time

Stephen King told a story called "My Pretty Pony Time."  Wikipedia gives us a summary of what this means - do you remember when you were little, how everything took s-o-o-o-o-o long, but "how when you grow up, it begins to move faster and faster, slipping away from you in great chunks if you don't hold tightly onto it. Time is a pretty pony, with a wicked heart." Time does seem to speed up as we get older.

The thing is, just as I am sure there is Pretty Pony Time, there is also Migraine Time.

Migraine Time is the time it takes to get things done vs. the things we want to get done and when they are actually accomplished.  In real time, you wake up, brush your teeth, maybe take a shower, and go about your day.  In Migraine Time, it feels like you are moving through Jell-o, making choices that require extra attention and extra time, all while playing a game of "how bad is the pain" followed by  that "uproarious" *cough* sequel, "Do I Have Enough Medication to LAST?" *sigh* Always a crowd pleaser, right?

Migraine Time happens in a fog. Migraine Time happens in THE Fog. A person in real time doesn't think twice. They're able to just DO things. We HAVE to think twice before we CAN do things. Sometimes we even have to think twice while we're doing. The whole time...

Migraines don't care about deadlines, in fact working under the added pressure is sure to bring on another attack, or, if we're already working with a deadline and a migraine both, to make sure that migraine is every bit as awful as it can possibly be.  We have to learn how to do things in other ways.  We can't just do things the way non-sufferers do.  Everything we do is more of an effort; it requires Special Handling.

By the time you read this blog, as of June 3rd, 2012,  we have launched a website:  Chronic Migraine Awareness  is now a live site for anyone with access to a computer can learn and feel at home.  With the help of many suffering friends, we have worked hard through our pain.  Most of us are unemployable because of the level of our disease, it's hard to make an employer happy when you're not even able to sit at a computer for more than 15 minutes at a time. Case in point - we have all tried to hard to have this site launched by the start of Migraine Awareness Month. This is a site about migraines, after all! But it's a site about Chronic Migraines...and with Chronic Migraines, we laugh...and remind ourselves that we're living with Migraine Time. We remind ourselves that The Migraine always has other plans... *sigh* With us, we can plan on the very real possibility that our (almost- to completely-constant) migraine will ratchet the pain up, throw in some auras, maybe a bit of vertigo - there's no END to the fun! *cough* It will keep us in bed, or in the bathroom being sick, or like me, in my "cave" - to everyone else it might be my laundry room, but to me, it's a refuge...the quietest, darkest room in the house. There we are, unable to do anything, existing on the sidelines, in Migraine Time again.  It will last for hours, maybe days, and that is just ONE migraine.  For us, though, "she" never comes alone!!!  Every month, for people with chronic migraines, "she" brings 15 or more of her friend along with her...to the "party"...

So, the point is that, our new website is going to be done in Migraine Time.  It is a work in progress, we are doing our best while suffering and looking through one eye.  Welcome to Chronic Migraine Time!!.  Things get done when they get done, because that is the only way we can do anything.......BUT WE DO!!!!!!

Chronic Migraine and Suicide Awareness Day~ CM&SADay

When I hear about someone, especially a friend, trying to - or, worse, succeeding in the effort to - commit suicide, I try so hard to put myself in their shoes. It is so hard to understand what someone must have been going through to cause them to attempt suicide.  Why didn't they talk to someone? Why didn't they talk to me?? What didn't we understand?? How could things have been that bad?? How could I not have known...?

  It's so hard to understand...for most people. For some of us, though, it's so easy. Too easy... Way too easy... For many chronic migraine sufferers, especially for those of us who have been labeled "intractable," the "why" is very easily answered.  We live at the maximum range of any pain scale you might imagine (and then some!)...day after day...week after week...with very little respite.

Add to that the idea that we have been to multiple doctors...in multiple disciplines...and each of them, after trying multiple things, has passed us on to another doctor, effectively washing their hands of us (why, I've even been told by a doctor that he was washing his hands of me!)

  From there, understand that doctors, if their "on our side," are fighting a system that says that pain medication is bad. And it is, in so many ways, but...

  What the system doesn't realize, or at least, doesn't acknowledge, is limiting pain medication because we might become addicted sounds very much, to us, like limiting breathing for the same reason.

We don't ask for pain medication without first being in pain. We are often (usually) on preventatives of one kind or another. Often of several kinds. We also take "abortives" - medication that is supposed to stop the migraine. All too often, it doesn't.

For us, chronic pain means that we always have some degree of pain. Always. And, as any normal person would, we will always want to be rid of it. Heck, we would often be more than satisfied just to get the pain somewhere in the realm of a normal level.  The pain in our heads is like being stabbed in the head with the sharpest knife, over and over again. Our brains feel like they have expanded to at least twice the size and ought to explode from the pressure.  Sometimes this pressure goes behind our eyes, making us wish they could pop out...and making us pretty darned sure that it's quite possible that could happen.  All of this is just one aspect or layer of the things our bodies go through.  

With each migraine there are symptoms that will alert us that the pain is coming, like the clouds rolling in. Often weather is a trigger so that storm that you see is what we are feeling.  With every lightning strike there is that echo of pain in our head.  When the storm has passed there is the damage left in its wake.  Again this effects us physically.  We are worn out, exhausted, spent, feeling like we've been hit by a Mac truck...feeling that the driver backed up and did it over and over again... But we can feel that next storm coming, and we have no time to recover from the onslaught of pain before it is here again. This is your life, day after day when you are an intractable migraine sufferer.  No one listens.  You are a prisoner of your own body.  You are called names like lazy for not making more of an effort.  If there were any way to not suffer without having to take meds, believe me, we would do it.  We want nothing more than to be part of life, society, and our families rather than crying, in bed and isolated. Again.

There is no light at the end of the tunnel; there's just more tunnel.  There is no relief, just a break, sometimes, before the next one hits.  This is what drives people to end their lives, not because they want to die, they just want an end to their white-hot, searing pain.  To know that they have some control in their lives, because it is regularly taken away from us by the very people we look to for help - uncaring, under-educated medical professionals.  This isn't a paper cut, and it certainly isn't just a headache!!  These are chronic, agonizing migraines, happening one on top of the other, lasting days and sometimes weeks long.  Sleep doesn't relieve it, if it can be achieved at all.  You are faced, day after day, with this bleakness.  Here is the stupid thing... It really doesn't have to be this way!!!!!!!!

 We need more education for the medical world, more understanding from the medical world.  

There are some in the medical field that believe they are doing us a favor by not prescribing narcotics because of fear of addiction.  There is a physical component to addiction...but there's an even bigger physical component to pain.

Doctor, heal thyself...then, please...heal us, too!

Mindsplitters and other Migraine Fun: Give us some credit......

Mindsplitters and other Migraine Fun: Give us some credit......: Have you tried, rubbing lemons on your head?? It worked for my cousin's sister's mother.   Garlic!!!!That is what you need.   What about Sud...

Give us some credit......

Have you tried, rubbing lemons on your head?? It worked for my cousin's sister's mother.   Garlic!!!!That is what you need.   What about Sudafed??.  It is probably allergies.  You just need to get out and get some sun, you need vitamin D. This is just some of the stuff we hear from well meaning non sufferers.

We are chronic!!!  For us the best hope is that we can manage our pain.  We aren't going to get better unless there is a cure or better management. So far there are NO MEDICATIONS PRIMARILY FOR CHRONIC MIGRAINE. There have been no new migraine-specific medications produced since Imitrex in 1992. Botox is a cosmetic treatment that has had positive results in chronic migrainuers.  It was not created as a medical treatment, we just got lucky with that one.  I have an nerve stimulator, it isn't approved by the FDA yet.  It is also not a drug.  There needs to be more research, but that is another blog.


We have tried everything out there that seemed reasonably possible and even those that weren't so reasonable out of shear desperation. We've seen allergists, dentists, chiropractors, acupuncturists, neurologist, cardiologist, ear/nose/throat specialists even reiki practioner.  We have changed out diet, excluded items and added new things.  We've had tests EEG, MRI, MRA, blood tests, some have had spinal taps just to rule out some other condition.  There has been a laundry list of medications month after month with little or no relief.  We have rubbed our bellies and patted our heads while singing the star spangled banner and jumping on one foot.  We would wear an antenna on our head if it would help.  We have done everything we can to not be prisoners of this disease.

If you see someone with this ribbon, they live in agony most of their days.  They aren't lazy, they are suffering.  They aren't drug seekers, they are looking for a reprieve to their pain.


We are  tattered, pain ridden version of our former lives where we are expected to behave as if nothing has changed.  We have to rely on raising awareness to expect to be treated humanely.  If an animal were in the amount of pain that we have to live with, it would be put down, but, because we can function and have opposing thumbs we have to suck it up.  For the record, those of us in agonizing amounts of pain becoming addicted to pain meds is like saying that a healthy person is addicted to breathing.  The pain meds rarely even take the edge of of some of the migraines that we suffer from.  If you had any clue at all, you would never say have you tried........

Prisoner of War

In the news a few years ago, there was a big debate on whether or not torture was an effective way to gain information from prisoners.  

Once, during some of my worst pain, I had to fill out paperwork for a new headache specialist.  I realized the next day that, when I was filling it out, I wrote things that weren't even true.  It wasn't intentional, I just couldn't think through the pain.

This thought comes back to me often.  It makes me think of the Spanish Inquisition and the torture those people had to endure, all to "save their souls".  I can tell you that it wouldn't have taken all that long to make me a convert.  If they want to make people talk, give them chronic migraines, at a "10" day after day, and they will tell you whatever you want, just to make the pain stop.   I don't make light of the pain of others when I say that the only difference between then and now is that we are being tortured daily for no reason at all...

Imagine what it must be like to be a prisoner of war.  Day after day you are held in a cell without light, without contact of other people, and knowing that at some point the pain will come.  You will be suffering the agony of the torture.  How bad will it be today???  When will it happen???   Is there a chance that a day could go by and you could actually feel "good".  Good, in this case, is just a day with out being tortured.  You still bear all the scars from the last session and the one before that; the scars haven't quite healed so everything is still fresh and raw. It is hard to live in the moment because even if there isn't any new pain, there is the anxiety that pain just around the corner, ready to start up once again...that knowledge just won't let you forget.  With any sound or light change, it makes you flinch because it could be a sign of something coming.  Will we get away without pain today???  If I make myself small, maybe it will forget me.  

This isn't the story of someone in a prison camp.  This is what a someone with chronic migraine disease faces day after day, every day.  A day out of the "hole" doesn't mean we are feeling better, just less hellish.  We don't know what it is like to be able to just wake up and go about our day.  We wake up and the first thing we do is assess the damage and pain level.  Everything we do has a consequence. Existing sometimes is all we can manage.  

Being a victim of long term abuse from our own bodies takes a toll on us physically, emotionally, and mentally. We look to those around us to help us, to liberate us from our pain.  Often we are treated as though we haven't been suffering at all. Often this treatment comes from those closest to us. Often, it comes from doctors.  We are not easily treated; we are the exception to the rules.  We want nothing more than to be freed of our prison and return to the life we had before this disease captured us.  Many of us can't. But we'd give anything, if we could.

Denial isn't a river in Egypt

Denial is something that chronic migraine sufferers live with daily.  We pretend that we don't feel as badly as we do in order to get through the day.  We fake feeling good so we can attend parties or other gatherings, or we have to miss them altogether.  

We are living a lie and this takes a toll on us physically.  We push through our pain so that we can be the spouse, caretaker, sibling and/or mom.  There are responsibilities that have to be met and the fact that we are suffering doesn't stop them from having to be met.  So we pretend that we are okay and go about our day.  People see us and think that we must be feeling good if we are out and maybe even look like part of the human race.  They leave us not knowing that inside we are crying and can't wait to be back in the comfort of our dark room.  

We get very good at this.  So good in fact that when we say we are sick people don't believe us or think it couldn't really be that bad.  Just because we are upright and breathing doesn't mean that we are feeling good.  People tend to project their own feelings onto the people they are with.  If you are angry you might snap at someone around you for instance.  When we meet up with someone and they are feeling good they think we must be feeling the same.  Even if we are asked "how are you", we play that question over in our heads before answering.  Do we tell the truth and explain all the things going on in our life, or do we give the short answer because we don't think the person we are talking to really cares to know.  More often than not, we lie and give the short answer "fine".

Worse than the denial we feed ourselves is the the denial from our family and friends.  They can't comprehend that we could be THAT sick EVERY day.  They have never experienced the level or duration or pain that we do, so we might as well be speaking a different language.  They think "how bad can it be, I've had headaches and went on with my life".  This isn't a headache; according to the World Health Organization and the Migraine Trust, "Severe migraine attacks are classified by the World Health Organization as among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis  (Shapiro & Goadsby, Cephalalgia, September 2007)."  Imagine dental work with out pain medications or being numbed first.  That is crazy, right????....Yet we are told every day that our pain can't be that bad, and we are just seeking drugs.  Well, we are, but it's to end our pain.  It is real!!!...It is AGONY!!!!  

http://www.migrainetrust.org/key-statistics

Please, we beg you to try to understand things from our point of view.  The pain, day after day, with little or no relief.  It is like being a prisoner being tortured day after day.  Not only does the pain wear on our bodies, it weighs on our minds and spirits.  We need those around us to leave this state of denial that things aren't that bad and join us in reality. 

For Non-Sufferers

Have you ever had the flu?? Have you ever been so sick that when you move you can feel your blood pressure in your head and have the sudden urge to throw up??  Have you ever whacked your shin on a coffee table or been kicked and saw stars??  If you add those two feelings together, then magnify them by 100 and place the pain from your shin in your head.  The pain from a migraine can feel like a knife in your head.  Sometimes it feels like there is so much pressure our heads are going to explode, or we wish they would to feel better.  This isn't a headache!!!

For someone that has Chronic Migraine as a diagnosis, it means 15 or more migraines a month.   They can last for hours or weeks at a time. One can end and another will start.  There is no break.   It isn't something that will just go away or is easily worked through.  In order to get this diagnosis we have seen a specialist and have had MRI's, EEG's and have tried multiple kinds of medications, acupuncture, food eliminations and anything else that sounded like it had any merit.   Things that you can buy in the store or this magical cure that worked for so-and-so's mother or cousin, isn't going to work for us.  We are exceptional people!! We seem to be the exceptions to the rule. Our pain is not typical. We are desperate for a cure!!


There are different types of migraines.  An average person can have a migraine induced by dehydration or starvation and never suffer another. Some people have them more frequently, several times a month.  They are usually lucky enough to be able to take a medicine like Excedrin and go about their lives.  Then there are those that suffer from one or more the list below.

• Abdominal migraine
• Basilar artery migraine
• Carotidynia
• Silent (auro without migraine)
• Ocular migraine
• Hemiplegic 
• Chronic Daily Headache, often the precursor to Chronic Migraine
• Menstrual or Ovulation induced 

http://www.healthcommunities.com/migraine/overview-of-migraine-headache.shtml

http://hemiplegicmigraine.org/learn/what-is-hm/

Some researchers say that once pain has found a route it is more easily transmitted each time after.  Like water flowing, once the path as set it flows easily.  So as time goes on our pain becomes more efficient.  

The migraine is not just only an agonizing pain in the head, it effects many parts of our body.  We have visual disturbances such as blurriness, sensitivity to lights and sounds, confusion, dizziness, loss of words, aches and pains in our muscles  and joints that create stress and tension.  Being in constant pain and then hearing negative comments from the people closest to us, just makes us feel worse.  We already have so much guilt at not being able to accomplish things as we used to.  We mourn our old lives and who we used to be.  We know we aren't as much fun anymore and don't enjoy doing the things we used to.  It bothers us when we have to cancel and let those around us down.  This just compounds the depression we already feel.  Some sufferers have become experts at putting on a good face and may  look great on the outside, but on the inside they are dying.  We would like nothing more than to be a functioning part of society and to be able to hold down a job.  Most of the time we are alone in a dark room, quiet, away from all, in isolation.  In prisons this kind of isolation is considered an intensive punishment, your psyche is effected by being alone for all that time.  We crave human contact.  Most of all we need you to know that this isn't our fault. We are victims, held hostage by this disease.  We look to our family and friends to reach out to us and pull us out from our desperation.  Too often tho, it is slapped away but words such as lazy or accusations about being a drug addict.  We need empathy and understanding. This isn't a hangover, the worst hangover ever still wouldn't touch what it feels like.  We didn't cause this.

Doctors and researchers are doing their best. Chronic migraine is not easily treated. There are hospitals and clinics specifically for head pain treatment and even they have had limited success.  Please know that we are doing everything we can to get back to the life we once had.  We are doing our best to raise awareness, thank you for doing your part and reading this.  Your attempt to understand the sufferer in your life will not go unnoticed.

Us and Them

Often we are surrounded by people that do not understand what it is like to live with chronic migraines, or any type of chronic pain.  We forget what it is like to be in pain.  If we didn't our instincts would kick in and we would go no where out of the fear of pain. Also there would never be any siblings, I wasn't given the luxury of an epidural with the delivery of my children and was given only Demerol.

What our family and friends need to know~We already live our lives with so much guilt.  We aren't able to be  the spouse, parent to our own children, good child to the aging parent, sibling when it applies or employer if we are still able to hold down a job.  We push through the pain and pretend like it isn't there trying to fool ourselves and those around us that we are able to do things like we did with out the pain.  The people around us don't always appreciate that.  Instead of support we are greeted with negativity.  Things are said like "you are sick again??...you are always sick".  If there were anything else we could be doing other than suffering, we would gladly do it. When you start hearing you are shit day after day, sooner or later you will begin to think you stink.

What we, as sufferers need to remember~ You are sick, you can't possibly produce and be as effective as someone that is healthy so don't try to keep up.  You have to go at your own pace and learn to say no.  This is often the hardest thing to do.  We don't want to feel like we are being difficult and then take on tasks that we will most definitely pay for it later.   Be your own best friend!!!  Treat yourself the way you would treat your best friend.  Don't neglect yourself.  Making yourself a priority.  Taking care of yourself and seeing that your needs are met will make you a better person all around.  Pushing yourself when you are chronic will present itself somehow physically.  This does no one any good.  If  you are one of those that has control issues, you need to learn to delegate.  This requires as much control as doing it yourself.  If you have others in your home that are capable then they should be doing their part too.

Positivity

You've heard that a positive attitude is essential to have.  I tend to believe this.  It is not the cure all to cares and woes but it won't make things worse.

In science we are told that everything essentially comes down to energy.  We are also told that 2 types of energy, positive and negative.  Like with magnets, when faced with the opposing forces they repel. In math, a positive and positive equals a positive.   We need to apply this concept to our lives. What ever we put out into the universe is what we will get back.

There was a time in my life that I was the moron magnet.  I would attract all the wackos.  After much soul searching and growing it became clear to me that I was attracting this type because it was what I was putting out there to the world.  I had low self esteem, felt unlovable, damaged, also sick with migraines but at this time I had no clue.  I was a murphy's pessimist, meaning that not only did I think the glass was half empty, I was waiting for someone to drink the rest on me.  It was just a matter of time before something bad would happen.

In 1990 my niece Katherine Mary was born, and died 16 hours later from SIDS.  How could something like this happen??? This innocent soul??  How could I ever by happy or smile after this?? Well obviously I did.  I learned that to survive that I needed to find something to make her life matter.  I had to find some good to come from her death.  So began my journey to find the good in everything, I was resolved to find a blessing with anything that seemed like a loss or indignity.  No bad experience would be wasted, only learned from.  I also started to notice that the more good I found the more that came back to me.  Finding the bad in things was too easy.  Looking for the positive was often more work but it was worth it.

So what does this have to do with migraines?  Well in March of 2009 I had the chance to do something positive not just for me but also for, you my pain pal!! I entered the study for a Peripheral Nerve Stimulator at Northshore LIJ.  It has been a life saver.  The deciding factor was that my daughter, then 12yrs old had her first migraine and it was hell.  This no longer became about me, it was about her and all of us that suffer to the point of wanting to end our lives.  This was going to be the positive thing I would do.   It took me four surgeries to get it right, that is another story.  I haven't regretted it for one moment.  Since then I have created support groups and have been able to help many people.  It is just a drop in the bucket compared to those that need help but I'm hoping that the long term positive will be awareness and a cure for all of us.