Tuesday, February 5, 2013

Thank you to my Cluster Headaache Followers

Thank you to my cluster headache followers.

I started this blog int he middle of December of 2012 and its just the very beginning of February 2013 and almost 1500 hits so far. I have had over 102,000 You Tube views on my videos. Over 76,000 on my one video alone. I know by today's standards with video hits going viral overnight of a million hits but I am very proud of this. For a disease that affects 0.01% of the worlds population. And I live in a city of over 350,000 and there is only 2 other survivors I know of, its a very very rare disease.

And to have this recognition by loyal viewers is just incredible. When I made my 1st video. I had zero attention of seeking any pity or recognition for people feeling sorry for me. I made the video initially to validate what i was going through. Because telling someone you have the wolds most painful disease known to medical science is just a deer in headlights look. People are in dis belief or just looking at you like "yeah right" or thinking you want a pity party or attention which above all is false. Frthest thing from it in fact.

I recall having a conversation with someone explaining I had to quit my job because at the time I was planning my own funeral. And he said you don't have to quit. Take a pill or just lay down and quit your whining. Its just a headache. I made the video and despite some cowards on their computer sitting in their moms basement eating Cheetos at 3am and writing nasty cruel ignorant comments I have had great success with people reaching out to me. People either sharing stories of themselves, loved ones, co workers or friends or themselves.

I will never condone or argue someones choice to take illicit illegal drugs so this has been an ongoing battle on my videos. Some are adamant for me to try or use or call me crazy for choosing brain surgery over drugs. Like I have written before its a personal choice. I will play no part in encouraging others to use or try drugs to relieve pain so I never accept or post those comments. I know this frustrates some CHrs and by all means they are welcome to make their own blog and videos and show their choice. Its my page, my channel, my choice.

Aside from negative posts which are 1 in 10000, I have had great success is connecting with others who share this dreaded disease. Had some nice talks and maintain some friendships over the Internet to this very day. Twice I been made aware of suicide. This validates the disease and the nickname Suicide Headache. Its hurts me personally because I always feel like we lost a team member against the fight. Someone in my family. Christmas Eve 2 years ago I received a suicide email. I tried desperately to stop,save and help him. This person never once replied back to me ever. Since then I been on a journey to spread awareness, give encouraging words, comfort and help others with CH know that they are not alone. Their is support out there. We do care. I care, And if  I help one person,than all my videos, all these blogs are worth it. This blog can apply to so many that are sick with other ailments and diseases. Not just CH. Every video I make. Someone watches. Every blog I write. Someone reads. And all these hits, despite the 1% cowards, its been very successful and I just want to thank everyone one of you who has watch my videos, read all my blogs and sends,forwards them to others.

Thank you from the bottom of my heart, because of you I writeand share today.

God Bless you and many thank you's.

1 comment:

  1. Thanks to you and your courageous efforts to write and maintain this blog. As much as this is to promote awareness for those of us who do not understand, and connecting with others, I know it is for your own healing and sanity. Thank you for being strong and showing us that no matter what life throws at us, there are people who love us and are willing to share in our struggles and in our triumphs.

    Try to focus on the positives and let go of the things. That hold us back
    Thank you