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.

Not what I was hoping for....

So I had my appointment with the Neurosurgeon. I guess I set myself up for disappoint. Somehow I had it in my head that this doctor would have all of the answers. Guess what; he told me NOTHING new. I was so devastated that I started to cry in the appointment and then immediately following the appointment. I don't know why but I feel like I am following the yellow brick road, but mine is filled with potholes and deadends.
The up side of my trip was the time I got to spend with my dad!! He is the leveled head one- knew I was setting myself up for a world of hurt, but try and tell me that! I like how honest my dad is and how he allows me to be honest- even if he does not always like what I have to say.
I think through all of this what scares me most is the unknown. Will I ever be Beast free?! Will my life ever begin again? Who am I now? One of my biggest fears is that those I love and hold dear will not be around for me to get my life back together. I don't want to be this person for the rest of my life!!!
I have a follow-up appointment with my neurologist coming up to discuss the outcome of my trip to Jacksonville. Until then I will just try to breathe....

Fear of the unknown

I have always been the type of preson who is not big on surprises!!!!  I like to know what life has to offer and make the decision on how to proceed.  In my new life, I am learning that I have very little control over anything.  I spend my day at the will of the Clusters.  I can't workout when I want, go where I want, see people that I want.  I would have never thought that something so small as a "headache" could take over my entire existence. 
Last week I was supposed to go see a new doctor.  I was SO excited, maybe after a year and a half I would finally get someone to help me.  I was anxious also.  There is a double edge sword in this whole process.  I want to find something that will make me better, but all of the things I have tried have not worked to date.  So I am anxious, am I walking into another medicine or procedure that will not work?  I am also anxious about if I do find something that works!!!  There are so many unanswered questions about my future.  If I get better will I stay better?  Will I be able to make a life for myself again?  The unknown is very scary.  BUT I don't have to worry about that at this moment!  Why you ask; well my new doctor appointment was rescheduled for over 3 weeks away.  Now I know many say that 3 weeks is not that bad when I have been waiting so long; to me it is a lifetime!  I cried like a baby- I mean ugly crying so loud that I think my neighbors heard.  That time table, 3 more weeks, is 3 more weeks that I am at the mercy of the Cluster.  I am trying to put things into perspective and understand that I am just not in control!!!  For now I am just trying to breathe.....