Migraine & Headache Awareness Month #3- The Hunger Games

I would like to say that I have always done everything I can to help myself, but that doesn't always tend to be human nature; and regardless of what some family members believe; I am human (not an alien with monkey toes).  If my cluster headache and chronic migraines have taught me anything, it is to be proactive.  Since I tend to be a(n) controlling organized person, I have become pretty good at keeping track of things.  Most of my doctors are horrified when they walk into the examining room and I have my 20 suitcases full of medical records and Headache/Migraine charts taking up all of the room.  After he/she makes their way through the forest I have brought with me, we get down to business. 
1) When did you start experiencing head pain?
2) Describe your symptoms?
3) How many attacks do you have?
4) How long do they last?
5) What makes the attacks better?
6) What makes the attacks worse?
and so on and so on and so on......

I have the questions memorized, so frequently I confuse the new doctor by just calling out answers to questions he/she have not asked yet.  It's breaks up the routine a bit....

With all kidding aside; I have come to live by my- DO THIS; NOT THAT RULES!!!!
1) Do not drink alcohol unless you want to be screaming in pain for three days.
2) Do not do strenuous exercise.  ***My physical therapist taught me to increase my incline on treadmill instead of speed so I am getting exercise without triggering an attack.
3) Do not take naps and try to get enough sleep.  This is a tricky one.  My body is terrified to sleep because that is when the beast (Cluster Attack) comes out to play.  But if I don't get enough sleep the beast comes anyway and brings a migraine along for an added bonus.  And naps are like setting off fireworks in my living room- really enjoyable but hazardous at the same time!
4) Try to eat right.  Which is a joke!  Making food is impossible.  And the last thing I want to munch on when doubling over in pain is a carrot!  Bring on the chips and chocolate baby.  I may not be able to form a sentence; but I can sniff out my junk food anytime.  However, I can definitely feel the difference in severity of attacks when I follow this rule.
5) Stay calm.  Anyone who truly knows me is laughing at this statement.  Having less stress and dealing with situations accordingly is best for the Migraine & Headache sufferer.

Now I said that I have come to live by all of these; that doesn't always mean I am successful at living by them all of the time.  The best that we can do is our best in the moment.  For each Migraine & Headache that we suffer through and come out on the other side to fight another day is a win for us!!!!!  The main goal for me is to just keep breathing....


June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month #2- X-Men

When I think about my darkest hours I remember back to when I was a child and all of the monsters would come out calling when my house fell quiet.  The nightmares that would wake me up back then now make me laugh when I think about them.  But in the moment they were very real and I was always looking for someone to rescue me. 
When my nightmares started occurring 24 hours a day in the form of debilitating pain, I wanted to return to the 5 year old me that could be soothed by my father's suggestion to think about all of the good things in life.  When that didn't work I had to surrender myself to the fact that this nightmare would be bigger than I could manage on my own.  So I sent out my signal for help and the same people who supported me as a child returned to rescue me and this time they brought some friends!!!!

My parents- They have schlepped me to hundreds of doctor appointments through out the state to find answers.  They have helped me accept that where I am right now is not due to a lack of trying.  They help me see the bigger picture and not get stuck in the stress of the moment.  They take care of me like I was still the little girl woken in the middle of the night with nightmares.

My siblings- They have listened to my fears even when I call or text in the middle of the night.  They make me smile by making fun of me.  My sister sends me care packages of energy drinks and candy!!!  My brother reminds me that if the doctor would have just VAPORIZED me like he suggested when we were kids, we could have avoided all of this.

My friends- They have continued to call and make plans with me despite the fact that I don't always respond and I cancel on a frequent basis.  They also know not to say things like "oh, I get headaches also" or "don't you think you should see a doctor".

My current doctors- They have not given up yet!!!

My In-Laws/sister-in-law and extended family- They accept me for who I am right at this moment.  They are so far away but try to help out as much as they can.  And they love that I am a University of Michigan fan!

My Stepdaughter- She brings a carefree version of life into our house.  She also brings entertainment and laughter.

and last but definitely not least......
My husband- He has become something I would never want anyone to be, my caretaker.  He along with my parents drive me everywhere.  He works two jobs to provide.  He runs himself into the ground doing all of the things that I can no longer do.  He deals with my HORRIBLE moods.  Most of all he tries his best to understand. 

Every single person who I have in my life is a piece of the jigsaw puzzle I am made of.  If I lost a piece I would not be able to be as together as I currently am (insert laughter at that statement).  I have not named everyone specifically because I am lucky; I am surrounded by so many people the list would be overwhelming.  I try hard to make sure that those in my life know how special they are to me; hopefully all of you who are, know it. 

Now I will take a moment, feel special, and just breathe.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Migraine & Headache Awareness Month # 1- Phantom of the Opera

   In high school I was the girl who always wanted to be the dramatic one.  I wanted to be the girl who stood out and was easily approachable.  However, I never really got that one right.  During choir I did well in the group numbers and floundered in the solos.  In debate I never really got the grasp of the argument or understood that a monologue was more than memorizing the words.  And dating in my teen years; not so much.  I quickly learned to accept my role as the sidekick in life.  We can't all be in the spotlight or it wouldn't really be special. 
    As an adult my ability to blend in worked itself out.  I was able to stand on my own two feet and be a star in my own right.  And then one day I learned what the disadvantage of being a star meant; falling on my face.  I was at the height of my success; great friends, amazing family, new husband, stepdaughter and a promising career.  And then one day I was put in the background of my own life.
    What was I to do?
    I stood up, brushed myself off and put on my mask.  A mask that was big enough to hold my disappointment, embarrassment, loneliness and fear from the world.  Occasionally my mask would get hit and someone would see a glimpse of the truth.  So I made sure that the next time I was around someone I had enough superglue so that sucker wouldn't move.  And when that didn't work I put myself in a box and hid from the world.  There are only so many "I understand" comments and disappointing looks a girl can take.  When your failure is in front of the world there is no delete button. 
   Failure is why I wear my mask now.  I know that those who love me and have taken this ride with me understand that I didn't fail.  That life stepped in and played a cruel joke- it stopped.  But what people don't understand is that I feel like a failure.  Why can't I look past the pain?  Why can't I put one foot in front of the other?  Why can't I just find my solution/my cure?
    I have gotten better at removing my mask more often; but until I can remove completely how can anyone really understand what these diseases we call Migraines and Headaches are really about?
   Since I cannot answer that question right now I will simply breathe. 



June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Trying to move on

It is very hard not to think about what life was and what it could have been. Many people say "live for the moment". Well guess what, I don't like this moment. So many people say "be blessed for what you have". Well guess what, many times it is hard to see past what I have lost.
However, I am getting better at moving on little by little. I have had such amazing support from my inner circle (parents and parent inlaws, siblings and sibling inlaw, step-daughter). I could not have gotten to this point without them. But now I have a new group of people who are helping me move forward and not be stuck in my history and my wish for the future. So many people talk about when I get better and when things go back to the usual. And while I thank all of you for caring enough to want that for me, I know that will never be a possibility. I am not that person anymore. Whether I like it or not, whether people understand or don't care; this illness (and that is putting it lightly) has changed my future. That is one of the hardest realities I have had to come to term with. An while some may want to offer up ideas that it is not true or not to give, I undertand that by admitting this I am showing what a fighter I am. My life won't be what it was, but whatever comes of it I will be happy with that.
I have to thank my friends in my cluster support group! They are so supportive and are helping me heal my heart even if I can't heal my head.
As I continue to work on this new lesson I will continue to try to breathe!

What's Next?!

Tomorrow I have yet another doctor appointment- yay! I am not getting my hopes up like I have for many of the others. Don't get me wrong, I still have faith that this will end at some point, I just can't keep building myself up on false hopes. When something concrete occurs then I will be hopeful!!!
I can't tell you how tired I am sitting in this house without something productive to do. I am looking at different options but I am afraid. I don't ever want to let someone down or leave my little family without some help. My mind is screaming for something more, but my body fights it every step of the way. I live with so many fears about my future. Many say not to worry about the unknown, but I don't know how not to. I am just trying to relax and breathe.

Fighting Fear

If someone was standing outside looking into my life they may think I have a pretty cushy existence. Amazing family, supportive friends and no responsibilities on a daily basis. That person would be wrong- my life is anything but cushy!!! I used to be independent, secure with who I was, didn't care what people thought of me!!! At times I could actually be somewhat obnoxious with my input (my husband may still feel this way at times). Now though I see myself very different. I have a hard time identifying my self worth. I struggle with worrying what others think and knowing whether I really have the right to an opinion on things now.
I know some may read this an believe that it is not a good idea for me to put this out there for all to see, but I am slowly trying to recapture who I am. I've worked my butt off to complete my education and it disgusts me when people judge me and believe that I would choose this life! I know somewhere in my being that I am still worth what I was when I was out making a name for myself, but it truly does beat one down when they are constantly being asked what they are doing to get better. Don't get me wrong; my family and true friends know the truth. Through my situation I am learning that many of those I called friends are not.
With that being said; should i have to live in fear of not being worth anything? Should a career define me? While I try to work these ideas out, I will just try to breathe.

Why can't the Beast stay home?!

Since november 2010 I have become a hermit, afraid to stray from home. I spend my day fillin it with nothing really getting accomplished. I do this because I feel that I can beat the Beast best on my home turf!!! If I am at home I have an array of weapons to combat the destruction the Beast can bring. Usually medication does very little; so instead I use oxygen, hot showers, ice, rocking, walking around, screaming and even at times banging my head against a wall. All of these are best done alone; definitely NOT in public. I have become very patient and understanding of the Beast. I guess that is why I don't understand why the Beast can't be a bit more understanding of me!
Tonight I ventured out of the house to join my parents and family friends out to dinner. I did not go out drinking or partying, just a quiet dinner. That is why I do not understand why the Beast felt the need to join me. He snuck out and sat right down at the table with me, ending my good time. I guest I just don't understand why the Beast doesn't give me the same consideration I give the Beast. Luckily I was out with family who are more than understanding and supportive. I don't think I will ever understand why the Beast can't stay home. Until the Beast decides to work with me I will have to continue to plan my outtings carefully and just continue to try to breathe.