Tuesday, July 25, 2017

12 years ago today I got sick-recap

Hard to believe that 12 years ago today was my first attack and my life would change forever.

To think, all I have been through in 12 years. It's crazy.

NO ONE could have prepared me for what was going to happen. Now, today. not too much surprises me anymore.

Let's review and reflect on 12 years.

First. I am not sure and I don't think there is a human on the planet that can tell me when I got sick. That a cluster headache was in my body before that day. There were no signs. Other than being a chronic migraineur. There were no physical signs of my health deteriorating.

It is not like I was warned either. No one said oh hey, by the way, you have been fighting chronic migraines since age 8. There is a slight chance you are going to have cluster headaches.

In fact.  Up until the day I was diagnosed and really until a month after diagnosis I had no idea what even a cluster was.

I was under an immense amount of stress at that time in my life. My son had been mauled by a dog and was dealing with night terrors just months prior, my ex-wife and I had lost a baby on my birthday and that day she was in a car accident. I guess my body said "Time Out". And then it happened.

I did not know what was happening or why.  And ONLY because I am persistent I was diagnosed in a year. Even unheard of in the day and age. Used to e 16 + years for a diagnosis. Now it's down to 4.

Even after I was diagnosed. I still had no idea. Only a month after my diagnosis I began to research it online and to my horror found out it was incurable and I would die like this and the suicide rate was the highest for any disease.

Within that year my marriage dissolved, and that was the beginning of my life.

The next 5 years were trying in every aspect.
1. I never wanted to stop working. I actually was on unemployment from a plant lay off. I was making money on Employment Insurance and SUB pay through the union. But I actively looked for a job and in fact took a job for way less money. About $300 less money a week than my EI. ALl because I loved working. And wasn't one to sit on my arse. I could have stayed on EI and made more money but it would have run out eventually.
That particular job and employer were the worst employer I had ever worked for. 60+ hours a week and 100 of it was stress. ZERO empathy for my disease.
In Dec of that year, I had enough of the disease, my employer, and fake cowardly friends.
2. I ended up after wanting to die, opening my own business.  I thought could hide my disease and work around it. And I was wrong. I was finally doing a career I had done before but this time was my business, my way and I was so happy and loved it, Except the suffering. Customers soon figured out something was wrong with the closed for an emergency sign was up more than the open sign. As I would sit on the bathroom floor crying in pain. I closed the business a year later.
3.My personal life went from losing my marriage to dating. Extremely difficult. I would tell women on a date I was sick and never hear from them again. Or I would hide it and then get an attack and never hear from them again. And then I met my wife and everything changed. 8 years later married!
4. Friends,  The closest of people in my life for over 25 years told me to quit my whining its just a headache and I didn't need to quit my job. Never visited me in the hospital. Vanished. Abandoned.
It's ok. They are just fucking cowards in my eyes and everyone else I know thinks exactly the same of them,
5.Family. I have this disease. My family lives with the disease. It's that simple.
6. Healthcare. Getting sick you become a guinea pig for Pharma meds. They through everything the text book tells them to give to patients even though they know chances are it is not going to work.
5 years of pills making me sicker with no help. Then I pushed for brain surgery and the journey of that began. 4 brain surgeries later. And still no pain-free until magic mushrooms saved my life.
7. Acceptance of disease. Acceptance isn't a failure or succumbing. Committing suicide is letting the disease beat me. And I lived despite wanting to die twice. But accepting I could no longer work, go on disability and choosing to give back by means of the blog, the VLOG on youtube, making the logo for us, fund raising, TV appearances, and getting the word out on TV and the movies with celebrities.
8.My health. sadly my health has deteriorated far worse than just the headache itself. 150lb weight gain, chronic new head pain (16 months now straight). Being told I am stuck like this. Cognitive issues, memory loss, PTSD from brain surgery awake, vertigo, nausea, fatigue, feeling like shit 24/7.
9.Family. I brought this one up again because of the loss in my family we have endured. It's personal and very tough.

Despite the long goatee, tattoo's and I look like a bad ass biker to some. I am just no one special. I do for others as I wish to be done for me. Sadly doesn't always work that way.  I have managed in the last 12 years. More so last 5 of creating an incredible amount of awareness and advocacy for headache sufferers around the world. My fight is relentless.  Some months and even years have had more success than dry spells but I never gave up or stopped and did this almost with no money.

Thankfully I have had world famous celebrities back me up. It has been humbling. I never felt for a second none of it was done out of pity.  Something I have never wanted for another human being ever.
'
You do not need money to help others, create awareness.

I didn't want this 12-year anniversary blog to be all about the pain and physical suffering. I am sure you get that I hurt a lot and all the time. No secret and no sense bragging, lol.

I haven't been all pain, suffering, and crying. There have been great moments in my life. Meeting my wife. Celebrating our marriage every single day. I wake up every day knowing how blessed I am to have such an incredible human being beside me. We have traveled, shared so much together and I look forward to whatever life throws at us. We rescued a dog the day I got home from brain surgery and had 2.5 years with him. Now we have a puppy.And will be able to have a long life with her. We take care of my dad since my mom passed away and at times can be tough but it's what PROPER children should do. Take care of their elders.

I have learned in the last 12 years of living in pain that is indescribable that some things in life are not a loss they are a lesson. People come and go, lives change. I am also a firm believer in  Karma. If you are lucky you get to see it first-hand tow. hehe. Some people in life want to be everyone's friend except they are not willing to be a friend to everyone.

It has been 12 years. Over 13,140 attacks averaging 3 per day. A VERY LOW number. Easily over 20,000 hours of my life taken from me, I will never ever get back.

But I do not live for when I am hurting I live for now.

Seize the day, whatever time it is. Live life.

#StayPositive


                                                                   DBS Brain Surgery
                                                          ONS Brain Surgery
                                                                Wires in my head
                                                                      Buster-RIP
                                                                   Lisa Marie Presley
                                                                     Tim Allen
                                                                      Jay Leno
                                                                   Wedding Day Las Vegas

                                                             TV INterview on CTV
                                                                   Logo I created
                                                                    Alan Thicke
                                      Mom fighting brain cancer, dad throat cancer  survivor
                                                                      Jay Leno
                                                             Verne Troyer aka MiniMe
                                                              The Trailer Park Boys
                                                         My wife by myside as always

                                                                       Never Give UP

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