Sunday, June 1, 2014

Migraine & Headache Awareness Month 2014- #1 What If......






It’s been said that patients who are able to talk about what they would do without their Headache or Migraine, tend to be less depressed and more hopeful. Some patients have lost the ability to dream about their lives without the present taking hold and destroying their ability to dream of something better.  

"What would you do if your dream of a pain and a completely symptom free life, came true?” 


This years blog theme 'Dreaming of a World without Headache & Migraine' is a tough one.  As a little girl I was taught to never give up, dream big, anything is possible.  As an adult, I have learned the cruel reality that dreams don't always come true.  That hard work doesn't always pay off.  And that some things just aren't possible.  I don't mean to come off as negative, I have just learned that while I can control the way I react to life; I can't always control life.  
I have struggled for the last 5 years to stop wishing for what my life used to be and to not hope for things outside of my reach.  I try to face every day as a new opportunity within itself.  I wake up each morning to meet who I will be that day.  This is the way I seem to be most successful at keeping the dreaded depression at bay.  
When I first read the theme for this years blog challenge I considered sitting out because dreaming tends to lead me to more pain.  But at this point I am up for anything.....

If I could wake up tomorrow and I was completely pain free and symptom free I would join the land of the living again.  I would make plans more than 2 hours ahead of time.  I would go and get a job and work towards achieving my license in Mental Health Counseling.  I would spend as much time with my family and friends just enjoying life.  And I would try to have a baby.  

That being said, if I wake up tomorrow and my dreams do not come true, I will continue to grasp every bit of hope I can find to keep putting one foot in front of the other.  I will continue to be thankful for those who support me.  I will keep looking for the lesson I am supposed to be learning.  

Monday, October 14, 2013

October 2013 Headache Disorder & Migraine Blog Carnival

October 2013 Headache Disorder & Migraine Blog Carnival

 



I am excited to be hosting the October 2013 Headache Disorder & Migraine Blog Carnival.  I would like to thank Diana Lee from Somebodyhealme.com for extending this opportunity to me.  She has been hosting this blog carnival since 2007.  This months topic is Migraine Horror Story?:  How has living with Migraine changed you?

 

I would like to thank all of those who participated in this month’s blog carnival.  All of the entries are very honest and heartfelt. 

 

Emily of Migrainista shares her inner monster with all of you in her post The Monster Inside Me. 

 

Candy Meacham of Art of Migraine gives us a look at her life as her migraines changed from episodic to chronic in her post Who Am I now?.

 

Jaime M. Sanders of The Migraine Diva shares with us how isolating suffering from migraines can be in her post How Migraines Changed Me.

 

My submission The Beast left me disabled and lost can be found here at My life with The Beast.  My submission explains my horrors and understanding I found through living with chronic migraines and cluster headaches. 

 

 

November 2013 Headache Disorders & Migraine Blog Carnival Theme is:

Your favorite Headache Disorders related blog post since the last carnival.

 

Submission are due by midnight (the end of day) Friday November 8, 2013 and will be published Monday, November 11, 2013 by Somebody Heal me.  Submit links to somebodyhealme@gmail.com

Sunday, October 13, 2013

The Beast left me disabled and lost....

Migraine Horror Story?: How has living with Migraine changed you?

Sometimes I think the easier way to answer this question is to explain how Chronic Migraines and Chronic Clusters have not changed my life.  This post would be much shorter.  However, I think that would be the easy way out and not give a clear picture of how debilitating migraines and other headache can be.

Having dealt with other health issues throughout my life I came to think of myself as invincible.  Nothing could stop me as long as I was willing to push ahead.  I was very unsympathetic to others with ailments that kept them from work or socializing.  I did not understand the difference of being sick and being CHRONICALLY sick.  I didn’t know that a body could get so rundown that simply getting out of bed would be impossible on some days. 

My journey into the great abyss started in November 2009.  But to really understand how devastating things turned, I need to go back a few months.  In July 2009, I met three major life goals in my life.  I graduated with my Masters Degree, got married and became a stepmom to a 4-year-old girl.  I was quickly on my way to personal success.  Then in November 2009 my life took a drastic turn.  I suffered my first Cluster Headache.  The pain was so intense that I got on my phone and called my sister in a panic that I was dying.  The pain was so intense that all I wanted to do was die.  After that, the dominoes fell…

Within a year I had been through 7 different doctors who all agreed that I had Cluster Headaches and Chronic Migraines.  They also all agreed that they did not know how to help me.  So I got passed from doctor to doctor like a hot potato; finally landing with a doctor willing to take me on and help me make it through my daily challenges. 

The physical changes in my life are easy to describe.  Basically my body failed me in every way, shape and form until I could no longer manage daily tasks such as working, driving, socializing and (on some days) even taking care of myself.  After the physical changes I began to experience depression, anxiety and fear.  I could not explain how I went from a productive member of the world to a big blob on my couch within one year.  I could not help others understand why I was afraid to leave my house and leave myself unprepared to deal with an unscheduled migraine or cluster attack.  And I could not explain how ashamed of myself I was.  I couldn’t wrap my mind around the fact that I could not push through this.  I ridiculed myself for turning into a lazy, good for nothing person: a person who had given up.  While in my head I knew this was not the case, my heart was breaking and it was my fault.

I spent two years living and wishing for what I had.  Not accepting the road that I was on; therefore wandering around aimlessly.  I became angry, resentful and very unpleasant to be around.  I couldn’t stand myself and wondered how anyone else could stand me.  Basically, due to Chronic Migraines and Chronic Clusters I became a nothing.  I hit my lowest place when I became jealous of a person who had died from another illness.  In my mind the only thing I could understand was “at least they aren’t suffering anymore”. 

This was when I became desperate for a solution…..

My doctor enrolled my in a program for individuals with Chronic Pain from migraines and headache disorders.  This program was not a cure for my pain, but definitely saved my life.  In a week, I learned how to accept myself for where I was in every giving moment; not live within the past or wish for what I don’t have.  I was given new tools to deal with the pain.  I worked with a physical therapist to find ways to make myself stronger.  I found my will to fight and my hope to live again.

I completed the program a few years ago.  Since then I have been able to take a different look at how my life has changed.  While the above mentioned is still true and that life is a battle every day, I am able to see positive things that have come from suffering from Chronic Migraines and Chronic Cluster Headaches.  I am much more accepting of my own personal limitations.  With that understanding came an awareness to not judge others.  So many people in my life or strangers I come into contact with look at me and wonder how I am disabled.  I learned that disability is not always a visible thing.  And what may be manageable for one can be debilitating for others.  I have learned that not everything in life can be controlled; sometimes I have to just wait and see where life will take me.  I do much better with not worrying 24/7.  Worrying doesn’t make things better; it causes stress that is bad for my body.  I have learned to be my own advocate.  Through my journey for a doctor and treatment I came into contact with many people who were making decisions for me that were not right.  I learned to speak up and let people know what I need.  I am no longer a “Yes” patient.  Most importantly I learned that those who love me will make it through this journey with me. 

Sunday, September 22, 2013

Request for Submissions for October 2013 Headache Disorders & Migraine Blog Carnival

Hello Headache Disorders & Migraine Bloggers,

I am very excited to say that I will be hosting the October 2013 Headache Disorders & Migraine Blog Carnival.  My hope is that you will participate!!!!! 

The October Theme is:

Migraine Horror Story?: How has living with Migraine changed you?

While it is encouraged that participants write on the monthly theme, off-topic submissions may be accepted also. 


Submissions are due by midnght (the end of day) Friday, October 11, 2013.  The October 2013 carnival will be posted by me (My Life with the Beast) on Monday, October 14, 2013.

Email the link to your submission to somebodyhealme@gmail.com. 

Please include the following information:

1) Your name as you would like it to appear in the carnival.
2) The title of the blog post you're submitting.
3) The url of the blog post you're submitting.
4) The title of your blog.
5) The url of your blog. 

You can get more information about the carnival at:
bit.ly/HDcarnival

FAQ are addressed at:




Looking forward.............

November 2013 Headache Disorders & Migraine Blog Carnival Theme is:

Your favorite Headache Disorders related blog post since the last carnival.

Submission are due by midnight (the end of day) Friday November 8, 2013 and will be published Monday, November 11, 2013 by Somebody Heal me.  Submit links to somebodyhealme@gmail.com


Thursday, September 12, 2013

Finding Friends Through Pain

Growing up my family moved frequently.  I eventually developed an internal clock that would quietly whisper to me when we were in one place for too long.  I understood that moving was a necessity but not always my favorite part of family life.  However, I usually found friends quickly once our move was made.  In school, choir was my passion.  I wasn't the best singer but I always tried!!!  I enjoyed choir because no matter where we moved I would immediately have a group to be a part of.  
As I aged and stopped singing I learned quickly that I would need to start locating friends in other ways.  Even after I moved away from my family I continued the tradition of moving around.  In college, I met people who were studying the same degree as I was.  After graduating I found my friendships in coworkers, sharing our life experiences.  
Trouble occurred when I became ill.  Many of my current friends at the time were at a loss as to how to identify with me any longer.  I myself was unsure of who I was and what I had to bring to the table as a friend.  I've since lost some friendships, but I have found so many more.  Today, many of my friends are other sufferers of chronic pain.  Some may read that and think "what a bunch of downers", those people would be wrong.  I have found treatment ideas from my friends, support through the tough times and a tons of laughs.  Most of these friends live all over the world and I have never met them in person.  That's ok to me.  Through distance they show me that they understand my struggles because they are experiencing the same ones.  
I believe that a person can show empathy without walking a mile in my shoes.  But I believe true understanding comes from being in the trenches with me.  I wish everyday for the world to be pain free.  I would never wish my pain on another.  And I would love to take the pain of others so that they can have a moment of peace.  I hate suffering day to day; but I am thankful to have found my "choir" where I always fit in and everything seems to make sense.

Wednesday, August 14, 2013

Sears: Opps, we fell short!

Today I was asked to take a survey in regards to my contact with Sears customer service.  In the survey I responded that I was not happy with the service I received.  I explained that I received a 'cookie cutter' response that I know others also received.  Once again I told Sears that for 4 years I have been battling with my Chronic Migraines and Chronic Clusters.  That at this point in my life, managing my pain has become my full time job and not something anyone should ever make light of.  At the end of the survey this is what I got back.....

"Opps, we fell short!"

Really, I think that Sears just fell of the cliff!!!!! 

Please continue to make those phone calls and send those emails.......



More information on this topic:
See commercial: http://m.migraine.com/blog/migraine-stigma-kmart-sears-feeding-it/
This Migraine Life: http://thismigrainelife.com/?p=349
Please sign petition at: https://www.change.org/petitions/k-mart-remove-the-pharmacy-surprise-ad-from-airplay-and-issue-an-apology#

Tuesday, August 13, 2013

Migraines and Other Headache Disorders are not something to joke about!

Any of us who suffer from Migraines or other Headache Disorders have a clear understanding that they are nothing to joke about!  So you will understand my surprise and when I read a post from blogger Teri Robert; where she included a commercial from Kmart.  In this commercial, a man and woman are surprised by Kmart having a pharmacy.  They go on to state other surprises.  Please click the link below to read Teri's post and see the commercial in question....

http://m.migraine.com/blog/migraine-stigma-kmart-sears-feeding-it/


After watching this commercial I was outraged that Kmart (owned by Sears), would have the audacity to make light of a disease that has left me with debilitating pain.  I followed Teri's lead and emailed Sears.  Here is my email to them and their 'cookie cutter' response that I know other individuals have also received today after complaining....


Dear sears/Kmart,
 
I saw your commercial for Kmart pharmacy; where the woman says "I don't really have migraines." I am a sufferer of Chronic Migraines and Chronic Cluster headaches. In the last 4 years my life has virtually stopped because I have become disabled by the pain of my neurological disease! This disease has affected my life, my family's life and the lives of my friends. I am asking you to remove this ad!!!  You would never use this ad with statements like "I don't really have Parkinson's" or "I don't really have cancer". Why do you think it is okay to minimize my health issues?!
Until this ad stops, I will not be a customer of sears or Kmart and will ask anyone I know to also not be a customer. Please don't minimize some one's struggles!
 
Thank you,
Casey Russell



Dear Crussell,
 
Thank you for contacting sears.com. We apologize for any inconvenience or concern caused due to our recent pharmacy commercial. I appreciate the opportunity to assist you.
 
We regret that you found the commercial offensive as that was not our intent. We are listening to what you have to say and we appreciate the time you have taken to let us know what you think about the commercial. We are always looking for ways in which we can improve.
 
All comments, suggestions, contributions and indeed all feedback from our sears.com customers are very important to us. Please know that our management team reviews feedback submitted by our customers and that many of the changes and additions have been as a result of feedback from our customers.
 
Sincerely,
 
Elizabeth G. (nganapa)
Sears Customer Care


I also placed a phone call to Sears Executive Office on the suggestion of a fellow sufferer (Thanks Lisa M).  Where I was told that they had taken quite a few complaints regarding the 'Surprise, Pharmacy Commercial" today.  However, no decision has been made at this time regarding this commercial.

I am asking everyone to please write or call Sears and ask them to remove this commercial and to please think about what messages they are sending in the future.  You don't have to understand my daily battle to know that minimizing a person's health issues is wrong. 

Thank you!!!

You can go to Sears.com and email customer service or you make call Sears Executive Office at 847-286-2500.  

Also, check out more on this issue at This Migraine Life; Corporate insensitivity perpetuates stigma.
http://thismigrainelife.com/?p=349