Sunday, September 11, 2011

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!

Wednesday, July 13, 2011

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.

Friday, July 1, 2011

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.

Wednesday, June 29, 2011

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....

Tuesday, June 7, 2011

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.....

Thursday, May 19, 2011

Ain't Goin Back- Living For Today

Everyday I get up and look in the mirror and wished I was looking at someone or something else.  The pain is rough, but I think the hardest part about this is losing who I am.  I have no identity now.  It becomes difficult to remember who I used to be and what I wanted to do.  I have spent so much time in these last few months reliving my life and wishing things would go back to normal.  But I ask- what is normal?  Something I have started to realize is that normal is what I make.  Right now my normal is fighting everyday to get the most out of it and trying not to allow the beast to break me down. 
As I grew up I remember being asked countless times what my dreams for the future were.  I have also been stuck in that cycle, constantly trying to pin point what my dreams are.  All I am doing is creating a pretend place to wander around in.  I have to stop living in the past and I need to stop wishing for a future and just take what I have in the here and now.  Was it what I expected my life to be- NO!!!!  But it is what my life in this moment is.  I can't punish myself for it or feel guilty about it. 
I have experienced those who judge me.  And I ask, how can anyone who really knew me think that this is what I wanted for my life.  To those who want to continue to judge me, I say goodbye.  I am not going to try to convince people that I am doing everything possible to get better or improve my quality of living- those who care and take the time know that I am. 
I am trying to make peace with myself and just trying to breathe.....

Monday, May 2, 2011

Eating the whale in one gulp!!!!

My favorite Shel Silverstein poem was Melinda Mae. It was about a little girl who sat down to eat a whale and it took her until she was an old woman to finish it because she ate it one tiny bite at a time. I have always referenced this poem while working with my students. I feel that anything can be conquered if you handle it "one bite at a time". For my current situation I am being a bit more literal!!! Since I have become so many things in my life have changed, I take life minute by minute. The one thing that has knocked me out of my rocker is my weight gain. Don't get me wrong- I have NEVER been an athlete and I have gone up and down with my weight all my life. This is ridiculous though! Every medicine they try has the Wonderful side effect of weight gain or increased appetite. Combine that with months of not being able to do physical activity and you equal craziness!!!! I should also mention that I tend to be an emotional eater, that is in full gear right now. So basically I have eaten the whale in one big gulp and have moved on to a second helping. Is there an end in sight, because right now I am just just to breathe....

Monday, April 18, 2011

Upside Down

I have spent my life dealing with different health issues; kidney stones, TMJ surgery, fibromyalgia, migraines, etc….  As far back as I can remember I have been sick.  However, what I learned throughout the years was to never give up.  No matter what I faced I knew that if I could just push forward I would be fine. 

In July 2009 I was at a high point in my life.  I graduated with my Masters Degree in Mental Health Counseling and got married, creating a family with my new husband and stepdaughter.  My bliss was interrupted in November 2009 when I experienced a headache that stopped me in my tracks.  The pain was so intense that my initial reaction was to put my hand through a window; instead I called my sister to talk me through the situation.  In January 2010 I was diagnosed with Cluster Headaches.  While it was a relief to know what was going on, it has been nothing but a tough road since. 

I spent my days taking many pills, which would be changed on a weekly basis by my neurologist at the time.  I would pull myself out of bed to make it to work, only to spend the day suffering.  Finally in November 2010, my supervisor suggested that I take a leave from work (Family Medical Leave Act) and apply for short-term disability.  That leads me to present day… I have been out of work since November 2010 and do not see being able to return any time soon. 

The pain that I have experienced on a daily basis since November 2009 has been so intense that I have taken to banging my head against a wall at times to feel some other pain.  For the first time in my life I am unable to just push forward.  Everything in my life has stopped.  I am not working, I can’t drive, I am rarely able to leave my house, I do not get to spend time with my parents, I do not have the relationship I want with my stepchild, my husband has become my caretaker and I have no to social life.  I spend my days either in pain or in fear for the next headache

I have seen 5 neurologists since November 2009; four of whom diagnosed me with Cluster Headaches (the initial Neurologist would not listen when I told him my headaches had changed).  The doctors that I met with say that I need a headache specialist, but that is easier said than done.  The earliest appointment I was able to get is for Oct 2011.  So until then, I just keep breathing.....