Thursday, April 13, 2017

My 7 Min of fame...... on TV again, birthdays, vlogs and the HERO Bill.

Wow, what a month its been so far.

My dear friend Bill of Hawaii competed in a 24 hr race in Texas. After flying from Hawaii to Los Angeles, then to Atlanta. NO IDEA why that stupid airline flies 4 states past Texas to send him back west again, Dumb. Then poor Bill is stranded in the airport for over 30 hrs grounded due to poor weather conditions. No hotel, no shower, no bed....just a floor.



Bill arrives at midnight with only a couple hours sleep, starts a 24 hr race at 7 pm. WOW. Just WOW,
I have no words. A 60 something-year-old retired Marine Veteran. Semper Fi!

Not to mention his bike was LOST, airline left it back in Atlanta...



What a fricken hero and unsung hero. At the 200 Mile mark, he developed saddle sores yet continued to plug away another 76 miles....So next time your complaining you had a long day....think about what Bill just did for cluster headache awareness. Bill you are an incredible human being and the world is a better place because of you. Congratulations and I will make sure awareness is done !!!



This week I had a MRI again. Not a pleasant experience for a guy who is semi closter phobic with PTSD. Luckily I was sedated pretty good but made the mistake of opening my eyes while inside the machine and realizing how confined I was. If it wasn't for the medication I would have squeezed the ball and had stopped the test. It took everything in me to finish it. I was petrified in having it done because of the neurostimulator I have in my brain but apparently thy checked and I was told it was safe. You are reading this so, I am alive and made it.

I wait a week or two for the results. I must be the only person who hopes they find something wrong with me. I have been having head and neck pain from mid neck to top of back of head for 1 year now almost. 11.5 months to be exact. 24/7 dull boring pain in my head. Non stop no remission. Feels like someone is pushing my head down as I try to lift up but painful. If that makes any sense. There is ZERO correlation to clusters, migraines or tensions.

Neurologist tried lido cane shots twice. No help. She suggested Botox but its $1000. So we see. I am more interested in seeing a review of the MRI to determine next course of action.

I do have faith in our health care. Its not perfect but its the people that make it work, I have and remain ti ave hope they find out what is wrong with me and help fix me.

This week I was also on TV again, ROGERS TV did an interview of me at my car clubs tree fort.

Click here for interview

I was pretty proud of that. To be acknowledged for helping people makes me pretty humble, I am upto 150 VLOGs airing tomorrow so that is pretty good. Appreciate all the love and support I am getting. If you have not subscribed yet. Please do, and make sure to hammer that LIKE button.

Please Subscribe here SUBSCRIBE

Also this week, my wife and I both celebrated our birthday! Mine is the 4/5th (long story) and here is the 12th, We usually celebrate together. Sadly the night we went out to celebrate my head as usual got it bad. And evening ended quickly and abruptly. I feel incredibly horrible as its not my wife's fault I am in pain so much. I know she understands. But I cant help but feel lousy.
I am a lucky man.  I love my wife more than anything.

Pain Free Wishes to all of you.

#StayPositive


Thursday, March 23, 2017

Support Bill Greineisen's 24 Hours Race in Texas for Cluster Headaches

Wow, how do you thank someone?

Really, to even be thought of let alone raced for I am truly humbled. I am at a loss for words.
And I guess from what my wife tells me, all the hard work I been doing with the blogs, vlogs, logos, awareness and advocacy is starting to come to fruition or is continuing thereof.

Tuesday, March 21, 2017

#UnderTheHat day....March 21.

#UnderTheHat day....

Today is hashtag Under The Hat day.....What does this mean? it means one day a year we as survivors of the world's most painful disease acknowledgment for something that affects us so deeply.

Chances are you are reading this after today March 21. But every day we live with this incurable disease that has taken the lives of so many.

Sunday, February 26, 2017

100 VLOGS, consecutively I did it

Thank you for reading this blog and watching my daily VLOGS. It is a struggle to film something everyday. Some Vlogs are short, some longer.

Thursday, February 23, 2017

Sunday, January 8, 2017

#HOMELESSMATTER .... The Homeless Matter

Why am I blogging with a vlog about the homeless?

It could have very well happened to me and you. I have seen with my own eyes people I used to work with living on the streets. Factories close, people lose their home because they can't pay their mortgage or rent. Marriages fall apart due to job loss, health, addiction, mental health, and getting sick like me. And yes people can become homeless for some of those reasons.