Friday, August 30, 2019

Bubbles, aka Mike Smith saved my life! From fan to friend......Never give up HOPE

I have looked death more than once right in the face. I was in a place of shame, misery, pain and suffering and when doctors here told me there is nothing we can do for you, and the medication will end your life sooner than later.....it would break anyone after being sick 15 years.

And all of this changed from a TV show.....fucking crazy isn't it?

I am confident you have at least heard of " The Trailer Park Boys" , right? It was an instant cult Canadian  hit. The first ever real life mokumentary about drinking, weed and shenanigans! But underneath all the 'Fuck off Lahey's, joints, and greasy deals to make money, its a TV show about having each others backs no matter what. Sunnyvale Trailer Park is not just a park. It is a community of family, love and acceptance. And all these actors in real life are just that....a family who has each others backs no matter what. And me, yes Tom from London Ontario. A freaking nobody was welcomed into the park with open arms making me feel as one of their own. I went from fan to friend instantly.

Kristen and I, we do not think of them as celebrities. We know who they are. But they are actual friends. I do not say any of this boasting or showboating. We truly care for these people as they have shown way more love to us than we could ever imagine.

If you have not read the last 2 blogs, STOP right now, book mark where you are, go back and read it. It will bring you up to speed today, GO!

Thanks for that. Now you are up to speed.

Literally, on our flight home from NY. I said "Kristen, what do we have planned for your holidays in August?" She said oddly enough, a couple car shows and that is it. Odd because in the last 10 years my wife's time off of 2 weeks holidays has been broken into a day here. a day there for this doctor appointment, this surgery etc. Basically my wife's last decade of holidays has been spent in doctors offices, hospitals so yeah. Lets go to Halifax!. People who used to be friends, don't call, don't visit. The sicker I got the least I heard from anyone. I would see more doctors in 2 weeks than friends in an entire year. It is what it is.

One friend actually said :" What do you do with your day?" Well, lets see. I was down 120 hours last week, you work 40 hours and get overtime. I do not. Being sick is a full time job!. And the government doesn't give me more money for being sicker. Anyway, you get the gist of what I am trying to convey. Don't feel sad. be happy I feel much better!

So we planned the trip. We had some plans to visit Peggy's Cove, possibly PEI, and some other sights.I was in constant contact with Mike Smith, the actor who plays Bubbles. This will be the last time I refer to him in that context. Because Mike is my best friend. I do not need to exploit him, post pictures that are private to us both to prove or appease anyone. Real friends don't exploit each other. But I will tell you this about Mike. He is kinder, nicer and has a bigger heart than any human being I've ever known. It has NOTHING to do with what he is and more so WHO he is as a human being. If you know Mike Smith personally like I do. You are one truly lucky person. He is the most kindest person I have ever known. Not just because he saved my life and gave me life. But the person he is deep down. Smith has helped countless people in his lifetime. God, I hope he isn't pissed or isn't mad that I brag about him because he is so fucking humble he wants zero recognition from anyone for anything. He in all honesty is the most humble person I have ever known. Generous to a fault. A  bigger Beatles fan than me ( I didn't think that could be possible), a human who would stop what he is doing literally to help someone for no reason and go out of his way to make sure no one knows its him. Elvis was like that.

Kristen and I arrive in Halifax and from the moment before the plane landed. I looked out the cabin window, seen the lush green province and immediately my heart felt joy and peace and knew we were home. Not on a trip.

We ended up spending the entire trip with Mike and the family. We fell in love instantly with the family. We gelled instantly. Mike and I have been getting closer over the past few months and I was scared to get there and think : Hand shake from Mike and Hey Bud. I saved your life, here is an autograph and best wishes. Nope. Mike invited us into his life with open arms, including his entire family. I have never ever felt so incredibly welcome and home.We were very fortunate to spend time with his wife's parents who are just fabulous kind loving great hearted people. Mikes dad and their kids. Kristen and I could have cared or less that we chose to miss out on some sights. We were just so happy to be there, spend quality family time with them.

If you know my wife personally. You will know that she is the easiest person going, Happy Go Lucky and has a heart of gold. Meeting Mikes wife was like I met my wife again. The kindest most sweetest  lady I have ever met next to my wife. She is a carbon copy of Kristen, Yet Kristen will disagree and say she is sweeter, nicer and funnier.

If you are hoping to read some intimate moments, I am sorry to advise you but those moments are private and those  memories of us being together are just that. Private. But those 7 days in Nova Scotia, were the absolute best days of my entire life. I did more in 7 days with them than I have done in 10 YEARS! Fact!

I also had some firsts for me in Nova Scotia.
I had a severe fear of open water. Well I still do but its much better.
I went on a sea doo/jet ski. For the first time in my life. I don't even think I seen sea doo in person. I am not sure but if I did. It was not something I was remotely interested then. Now I want one!
First time on a boat in decades.
First Donair
First time wearing cologne in years, as it was a major trigger for headaches. (* when going to a doctors office and the sign says fragrance free. Please adhere to it. A strong smell can trigger a week of suffering*)
First time I had alcohol in 11 years and 8 months. Last time I had a drink I stepped in front of a bus Dec 31,2008 at my first suicide attempt. I never drank a drop since. My first sip of any alcohol was Freedom 35 Beer. And fuck, it was Decent!( I didn't drink by choice)
First time in the Maritimes.
First time having a lobster sandwich. Still unsure if I liked it. Maybe Ill try one more time,
First time being awake at 2:45 am and not in pain!!! Holy shit. Crazy huh!
and the most important thing to me....First time being accepted for who I am with open arms. No one gives a shit who I am and that is perfect. I never wanted pity from anyone. Just friendship.

To me, that is the epitome of what life is about. Relationships. That means way more to me than anything. A very intelligent smart man who I got to spend time with told me verbatim" I don't give a fuck what anyone does for a living, but how you treat people means everything". That same guy then praised Kristen and I for helping others. Something I should start doing which I am terrible at....compliments. I don't like them. But I have to learn to accept them.

So yeah, it was many firsts for me, some even for Kristen. None of my firsts were planned and many I would have said no fucking way. But I did, lived to tell and have new loves because of it. I lived in a bubble for so many years.

The entire trip my health was much better. Only one bad morning and I am sure it was something I ate when I was medicated.Even my wife's tremor in her hand stopped. It actually reduced greatly when we were in New York getting treatment. I know my health affects my wife's health. It is nothing on purpose and neither anyone's fault. When we returned here back to London the tremor returned.

We were very fortunate to go to Swearnet. The home to where everything is created for the Boys. I will tell you that the staff are family related or not. This is a place anyone would work at. All smiles by everyone. A happy positive work environment.

The place is huge, It has to be. They film there. This is where the animated series is made, the show Park After Dark podcast is filmed and many more shows! Go to www.swearnet.com A membership is only $4.20 a month of $40 a year. Time well wasted.

The studio is incredible and what you may think it is. Many different current sets for production and many from the past and many for the future. I personally just love behind the camera as much as being in front of one. The whole filming industry fascinates me. Its why our living room is film themed. The person who creates the sets and props is so incredibly talented. My wife just loves her work. Kristen would love to do that!

I was very fortunate to go to a secret warehouse and see all the Trailer Park Boys vehicles and the famous "Shitmobile". A car that is as legendary as the General Lee and Batmobile. This pile of rotten rust should be in a museum at some point.  I hope it is never crushed. Being a car guy and a true fan of the show, this was one of the biggest highlights for me going to Swearnet to see the cars!

Everyone at Swearnet treated us like gold. They all made me feel like a celebrity. They fulfilled a dream of mine. I don't even think they know. But we made history together. Being able to spread the message and awareness for cluster headache sufferers world wide meant so much to me. Even though I am getting better, I will never forget those who are suffering and struggling to make it through another day. That is what this entire blog page is about., cluster headaches. If I can save a life, help one person with all of this. Give them hope. Then I accomplished what I set out to do by helping people.

I am sure some were hoping to hear some intimate details with Mike, Robb and JP. And I am sorry to say, they are just that. Personal and private moments. Do you plaster pics of your friends showboating on fakebook? I think...there is only 1 photo of Mike and I on fakebook and I didn't ask for the photo nor did I take any photos of us together. I am sure others got pics of us. But I never asked anyone for a photo or autograph because simply. These people are our friends. I am beyond grateful for that.

Kristen and I were fortunate enough to be in the heart of Halifax, see the local culture, experience it, live it, eat it and fell head over heels in love with it. A large muscular man, hehe told me " Maritime life is much different out here. It is a great place to live and a way of life like no other". And he didn't even have to sell me on the idea. I knew landing off the plane this is where we want to be. We are meant to be here.

What is so different to me is London Ontario where we live is so north, east, south, and  west. There its twists and turns and corners, and a million lakes. Making each drive scenic, beautiful and fun! There is no boring stretch of road. I laugh they call London the Forest City. Whoever came up with that should visit Nova Scotia and take that back. Its actually humorous.

While in Nova Scotia we made many life time friendships. People I call friends. People I want to know further. People who share the same values, morals and goals in life. People I would break bread with.  People who want Kristen and I in Nova Scotia. I am sure you can read where this is leading.

My father left Europe on 24 hours notice, and came to Canada with my mother, and 3 year old  with $25 to his name. To have a better life. A better future. My dad said he respects our decision to leave. Which is why Kristen and I are moving to Nova Scotia.

I was born in BC. Lived in Ontario since I was 4 years old and now will spend my remaining life in Nova Scotia. My wife has traveled Canada, Europe and most of her life in Ontario. She is more than happy to leave. She knows we have a future there. A better quality of life not just because of our friends but its cheaper to live there sick. I felt healthier there. And we have a future there. I am 47 years old. I have been so sick for 15 years getting worse every year, actually every day I was getting worse. Mike saved my life and gave me life. And for once in 15 years  I feel better. I don't want to live miserable and stuck in London. We want peace and happiness. I want that for others too, don't we all in life?

That is what I learned on this trip. I got a chance to see how other people live. With respect, courtesy and kindness. With beautiful surroundings no matter which way your head is pointed there. It is lush, serene and beautiful. I get why people flock to British Columbia. It is really heaven on earth there. But it costs so much to live in BC that I would be homeless. The Maritimes is equally as beautiful, for a fraction of the price. In comparison this home we live in is worth $350,000 all day long for a 900 sq ft home. Probably more as the market is hot. This same home with 5 x the size of lot close to the water will run you $265,000. Insurance is half. Just to give you an example. Yet this house in Vancouver would be over a million. Stupid isn't it. My income will never change on disability. It doesn't matter where I live. The amount I live on is the same anywhere, so living cheaper helps us greatly.

This is an opportunity of a life time to leave, to move there and already know people we call family. Actually I think they all called us family before the words came out of my mouth. But feelings are mutual. Mutual love, mutual respect. This is where we are going to call home.

At some point when we get settled. down the road after we move, we want to continue to help the homeless. And maybe. just maybe I will start vlogging again. Who knows. But up rooting my entire life from London to Nova Scotia will be crazy. The logistics, the cost, employment for my wife and leaving.  It is not as simple as moving across town. But if Kristen and I don't do this now. We never will and will regret it for the rest of our life.

Its funny, going to Beverly Hills or Caribbean trips you always say wow, wouldn't it be nice to live like this....and you know deep down it can never happen because of life back wherever your home is. Yet this time, we want and can make this our home.

For the nay sayers, who think that they have 2 weeks of summer and 11.5 months of winter, you are wrong, They have 4 seasons. unlike here where its Winter then dead hot summer. We didn't even have a fucking spring here this year. I will not miss Ontarrible weather.

Will I miss Ontario? I cant speak for Kristen. But nope. My life the last 15 years has been the least bit fun. The so called friends and people I knew here couldn't care or less I am alive. Cowards only honk thinking their childish behavior gets a rise from me. but i'm laughing inside so great thinking Bub Bye.  One day they will be laying in a hospital bed wondering where everyone went. Karma.So nah. no love lost. I'm good. The friends I have here are welcome to come visit us anytime. and chances are they will want to move too.  Nor am I going to gloat at the new life we now have. I knew deep down and told Kristen this trip will change our life forever. I said that as the plane left London. She now agrees with me. Our lives are forever changed. Not just because I feel better. We have a life now. It is in Nova Scotia.

If you get the chance to visit Halifax, and you love great food go to The Economy Shoe Shop. On Argyle Street. Also Sniggily Wigggily's is an excellent live entertainment bar with hilarious comedy nights on Sunday. A bucket list for me one day to write enough material to tell jokes. One day....
The Toothy Moose is another late night hotspot!. Its literally a block and a half from the water front. If taking a ferry over from Dartmouth you can walk off the boat, to the bar in under 5 minutes.  Downtown Halifax is spotless, new, vibrant and exciting. They have designated smoking areas and if you puff puff pass, you will be a ok. A few times I was having a splif and a cop pulled right up to me and smiled. I have not been to a bar since I met my wife. I've had no reason too. But these bars are awesome. Not a single fight, no egos. Those are left at home. Everyone was inviting, warm and welcome. One thing I noted and maybe its the same back here too. But Pride is everywhere in Halifax and it was so nice to see Love is Love. The LGTBQ is welcome in straight bars, and seen it first hand. Its not even a thing there. Like it shouldn't be anywhere. People. That is all they are to me. I am the least bit racist/homophobic person I know. Acceptance is alive and well there and I hope my LGTBQ friends come to visit us. No one gives a crap and that is how it should be. I hope its the same way here.

I look back and literally shake my head how a TV show, yes a TV brought us together, A few years ago I befriended a gentleman who moved from the UK to Nova Scotia to marry the love of his life. They married and two bambino's came along. My friend has been more than supportive with my awareness and helping the homeless. In days I seen dark days which were everyday, he always checked up on me. Always called, left thousands of voicemails making sure I was alive. Having me on his podcast several times as a guest on "Majors Mess Hall Podcast" He has been nothing short of a true friend. I got to finally meet him in person and show him the true dickhead that I am....just kidding. We gelled instantly like Mike and I except Mike and I's relationship is deeper. Simply because he saved my life. But my pal Gav, is just an amazing father/husband and friend. I feel incredibly lucky to have such  a wonderful friend. He is just one of many people who have accepted us. He pulled me aside after our first night and thanked me for not committing suicide and thanked Mike for saving my life. That is the point of this blog today.

It isn't that I partied and had the time of my life with the boys. It is that life can change in a nano second for the better. For 15 years I have lived with the worlds most painful disease. A title I fucking loathe to have. Not one I ever wanted. I survived a suicide attempt, and almost another and  I almost died many times form carbon monoxide, a fall, and an infection after one of my 4 brain surgeries. For 15 years every single god damn day of my life got 1% worse. Add 1% everyday for 15 years it adds up. Strength doesn't come from lifting weights, or a job. It comes from falling down 7x and getting up 8. I m in disbelief when I hear people complain about life that they have yet I prayed for the life they complain about. My ex friends who left me in the hospital and never once cared to see if I was alive. I forgive them for being cowards. But one thing I never lost was integrity.Those cowards don't know what integrity is. I think its what kept me going. To help others, takes the suffering and pain away and I know what it is like first hand to just think to yourself  I just need to make it to midnight mentality" Just get through one more day. When Mike saved my life. I had lost all HOPE. Mike gave me hope and in turn gave me life. And now a new life.

I hope you were not expecting me bragging I was partying with the Trailer Park Boys. Sorry, I will never do that. But I will tell you that Mike, Robb, JP, Pat,Jason and all the families mean more to me than anything. They are not their jobs or titles. They are people that I admire and respect who have careers in the public eye. My time with them will always be private.

To my knowledge, I know I am the only person in the world who has had this many surgeries for clusters and lived the life I have. The relentless pain and suffering for over a decade ad thinking I was going to die in London and think that the rest of my life  was going to be more relentless suffering and hurt from others. That is all changed now. Some human being for no fucking reason other than the goodness of their hearts saved me and wanted zero recognition. Why? No reason, because it was the right thing to do. Did they take note of what Kristen and I have accomplished while sick?. Sure, and that was never my intention that 10 years ago helping to advocate and awareness for cluster headaches, and helping the homeless for  5 years was never my goal to be recognized. It wasn't even a thought. And Kristen and I would keep doing it had we not plan to leave London. Now we will do it in Nova Scotia.

I am sure this blog may come as a surprise to come and some may say I don't blame you I would leave too. I am very proud of my accomplishments in life. I fulfilled a dream and opened my own Hot Rod Barber shop. We helped create awareness locally ad globally for Clusters. The decal was designed by me here in London. I did a lot here. I am proud of the things we done here. But its time to go. Some wont miss us. Those are the people who didn't care I was alive. That is ok. Mike has made up for every single douche bag I have encountered in my life who has fucked me over. We are good. I hold no resentments. I am so happy in life now and will be happier in the very near future.  We will finally have peace in life. It is all everyone wants isn't it?

Let this blog be the glimmer of HOPE you need in times of darkness. Your life can change in a nano second. I am living proof. God, I wish you could see the smile on my face as I write this. I am happy. We are happy. Never give up HOPE.

Thank you for being apart of my journey, peace. And pain free wishes to anyone going through shit.
Check out "Park After Dark" Podcast by The Trailer Park Boys on www.swearnet.com or listen on iTunes. Aug 30,2019 the podcast with me as a guest airs.  Have  a watch / listen. It was a bucket list to be in Sunnyvale. Guess what? We are moving to Sunnyvale!

                                           Watch the Podcast Here! at Swearnet, Click Here




Tuesday, June 4, 2019

Stem Cell Treatment

I went from not wanting to be here to being on a private jet flying to NYC all because a friend offered to help for no reason other than being a kind decent human being by giving a very sick friend HOPE.

Yes, that is where it began.

You know Mike Smith from the hit TV series" The Trailer Park Boys" or the band"Sandbox" or you know Mike from Nova Scotia. Either way. I knew Mike the same way you most likely did as "Bubbles". The thick glass wearing, kitty loving sweet innocent character. I know him now as Mike. And that is who he is to me. Not the TV/movie star, not the musician. He is a friend and hero to me. I know I met him as a fan but was just happy being his friend.

In April of 2019 I was struggling pretty bad. It all started last September of 2018. I had then waited over a year to see the Pain Clinic. I had such high hopes and was so optimistic that going to see a physciatrist (Fiz si a trist)with a potential procedure was my last and final hope. I had seen my GP, my neurologist, my neurosurgeon all with hopes of a diagnosis so I can get treatment for this this undiagnosable head/neck pain I been fighting with for 4 years on top of all the 3 other headaches.

Everything I have gone through since 2005 has been a  direct result of cluster headaches. Everything.
The 4 brain surgeries, the PTSD, the TBI, the 4th headache/neck pain. The constant 2am stomach aches, the 3 hours a day on the toilet, the memory loss, the pain....im sure you get what I am trying to convey. Cluster Headaches or Suicide Headaches is Trigeminal Cephalalgia Neuralgia. The worlds most painful disease known to medical science!. And trust me 100%. I take ZERO pride in that statement from doctors. I would have been so happy a doctor diagnosed me and said oh its 73rd on the list. go home and continue life. If that was the case, then I would have never hard 4 brain surgeries or a plethora of health problems. This statement of "Worlds Most Painful Disease" did not come from me. I take no pride nor is it an award I care to bare. So don't think for a second I am trying to Trump anyone's pain.

I don't want to focus this blog on the relentless suffering for 15 years. But I can tell you everything is a direct result of cluster headaches. All the surgeries, the weight gain, the medications that are killing me, the pain, the pain from pain...its relentless and exhausting even thinking about it.

Along the way. I lost myself.

For 4 years I been hoping to get a diagnoses for this 4th headache/pain. Seen every possible doctor my GP and I could come up with for help. Numerous x rays, several cat scans, a MRI, a long list of trial medications and finally one medication that gave me 40% relief. Ketorolac (Torodol). If you google it or know of someone in health care they will tell you that it is only supposed to be used for 5 days. I been on it 3 years!!!!. Do you have any idea how much damage I have done to my body from it? So stop right? That would be the logical way of handling it or trying another medication? I did, Many. More than I can even care to remember. Go without? I am 100% bedridden without meds. Literally I have tried to crawl to the bathroom without it.

After a YEAR wait to see a physciatrist at the pain clinic, I was told verbatim " Sometimes, we just don't know. Going in surgically is to much risk and the meds you are on will end you life sooner than later". Wonderful I am going to die soon. I said id rather live 5 years out of bed on Torodol than 30 in it. And left. They suggested I join a support group almost a year from my appointment. Stupid. I needed that group 15 years ago when I got sick not now.

Since that appointment in September I stopped vlogging, I went home to inevitably plan my death overtime.

I don't think some grasp the severity or long term damage being sick can do to a person. Either the medications come with side effects which require more medications to offset the side effects, medications destroying my kidneys and stomach. I waste 1-3 HOURS a day on the toilet. And its not fun to put it mildly. Every day I got 1% worse. Never once in 15 years did I ever get 1%  better. I got worse every day. Day after day, week after week,  Year after year. It takes a toll on a persons mental capacity what they can withstand. I'm not crying a pity party here. But it would take a toll on the strongest of humans and strength isn't from lifting weights. I've had the shittiest human beings hurt me, and I moved forward. I had the worst possible painful disease and kept going. I had numerous brain surgeries, trials, medications and never got relief. I lost my career, my vanity, friends and relationships all because of this fucking disease. A disease that is 20 x the national suicide rate. It takes a part of you that you think is gone forever. Over  25,000 hours of my life Ill never get back.
I was a day maybe two from cashing out. I had...enough. For months Id day to my wife. Don't be sad I'm gone, be happy I'm no longer in pain. And as much as I worship the ground my wife walks on. She couldn't help me.

Since September 2018 it got worse everyday, I had reached my boiling point months ago, It was so hard. I was literally trying to make it to midnight everyday. I went to bed early but if I made it to midnight in my head I won another day. It got so bad I I couldn't stop crying. You cry in pain but this was different. Not depression. But sick and tired of being sick and tired.

Mike and I had been chatting off and on, he recently helped me with a couple things. He was kind and made a shout out video to a friend of mine who passed away. Then my truck got broken into and the pricks stole the cards for the homeless. Which Mike replaced and added a shit ton more. 36 in total of $7 cards. Mike and I were chatting a fair bit. I really had forgotten about who he was in life and he was just a buddy who lived in Nova Scotia.

One day in April. I think ( could be wrong) the 25th, he caught me at probably the lowest part of my life. I was ready to go, planning it in my head, how where and try not to make a mess for my family. I had enough. All the pain, all the hurt,(two completely different things). I had enough. I wanted to go.
And Mike got ahold me of  for no reason other than hey man....how ya doing? And for whatever reason. I just verbaly dirreah all over him. I wasn't remotely concerned with who he was or I could possibly have him hang up and think that guy is fucked. But he did not. He said"I wanna help you". At first I thought  thanks Mike, I know who ya are and all but I know ya can't help me. "No, I am going to help you "for real....and then a light switch went off and I though Oh shit, he is dead serious....Ok Mike, how? I know the best Stem Cell specialist ! Prior to this conversation I had ONLY heard of Stem Cells and knew absolutely nothing about it.

No, Mike knew I was sick but had no clue how bad my life was in a 24 hour schedule. Mike asked me to email my medical story in my words. 6.5 hours it took me and its a 45 min read going fast. He said I'll send this to my Doc in the states and we are gonna help you!

At first I was blown away, I didn't know what to say other than thank you. An offer no one has given me before for all the crap wrong with me, I was told here to go home. Now someone wants to help me...it gave me HOPE. Something I lost a long time ago. My wife and I had out HOPE bags year round focusing on Christmas time but I never knew what hope was until I lost it completely.

Mike lit a fire in me that's been dead for years. I lost who I was or who I was to be.Its hard to explain an invisible disease to people who THINK they know or are greatly misinformed with what happens to me. My life in the public eye would have been easier had I been visibly sick. And when I am visibility sick. I hide.

Within a coupe days a GoFundMe was up, Mike was cranking out videos on Cameo.com to raise funds. Mike had set a goal in mind because of the costs involved to get treatment, fly me there, hotel, food, taxi etc. It was NOT cheap. But a procedure, a chance at a better quality of life that Mike believed in as he had personal experiences with people and Stem Cell Treatment that had very positive results. Mike seen first hand the benefits. And to me, it couldn't happen fast enough.

That day without a doubt in my mind and including my wife's mind and heart. Mike Smith saved my life. I would NOT be here if it wasn't for him. Period. And in all fairness I was happy to just to call Mike a friend and chat. I needed his friendship more than ever. My wife supports and loves me. she has been my rock and by my side through all the terrible things that has happened to me in the last decade, but Mike was a godsend. A gift. Not a celebrity who had the financial means to Make a Wish for a very sick man. Lets get that out now. I don't want ANYONE to think for a second it was MIKES responsibility to pay for anything. He did for me what was priceless. He saved my life. That you can not cash a cheque on. No one forced him. It was a chain of events that happened like domino's and I never asked Mike for a single thing, nor will I ever. I know he is famous, I know he is a celebrity. But put that aside for a minute. Forget who he is. He is a human being who found another human being at the worst and lowest part of his life and saved him for no reason. And the very first thing Mike said to me (hope he doesn't get mad) is that he doesn't want an ounce of recognition. Yet I thank him every time we talk. Who wouldn't? If Mike worked down the street from me and was not famous, my friendship would be exactly the same. I might see him more, but that is it.

Just when I hit rock bottom, was the lowest of low. At my worst point. A friend helped me and that is what Id like YOU as the reader to take from this. Not some celebrity who wrote a cheque because he could. Mike did this because he wanted to. So please any nay sayers out there, please remove your head from your ass and know there was no motive behind anything.

If anyone wonders why, we same age, like same things have same interests and goals in life.We just two dudes who happen to appreciate one another. End of story.

Funny, and classic...numerous friend request  popped up. Yet for years I been suffering these people don't call, don't contact me and now wanna know me cause I am on TV? Classic.

For starters, I know exactly how lucky I am. 100%. You don't have to tell me, remind me or say " nothing ever happens to me, why can't this happen to me"? That is a question only you can answer yourself. To Kristen and I, we feel like this was winning the lottery. I said almost everyday for 15 years that if I had won the lottery Id spend every cent trying to feel better.  Just a better quality of life. It is all I ever wanted. The sicker I got in life, the less I cared about my hobby or certain things in life. I focused on hours or minutes I wasn't in severe pain to just being happy to walk the dog or get chicken at Costco. Literally that was the highlight of my weeks. My wife and I wouldn't plan things because chances are Id be in to much pain, arrive late, leave early or not go. That has been my life for a decade.  My wife and I's life revolved around me, my pain and doctors appointments. Do you know I seen more Doctors in 2 weeks than friends in an entire year? And for anyone wondering. A text, a facebook message is NOT REAL RELATIONSHIPS. It is an extension but in no way any part of having human contact. Being isolated at home sucks. I spoke many times to Mike about  isolation and mental health. Human contact is very important. I think more needs to be done in this respect for mental health.

Someone said to me recently...What do you mean you have no time? Umm last week I was down for 120 hours....you work 40 hours a week. What do you mean what do I do with my time? Pain is a full time job with more overtime than you will ever do! I wasn't mad. Just people have no clue. They assume that because they had a migraine once or back pain that I must be able to tolerate it like they do. As far as I know and doctors here have told me. I am the only case...so how could you possibly compare? I dunno.

So as the GoFundMe was going, my local news station CTV London did a news story on us. Then Halifax Global contacted me. And since have seen it on hundreds of websites and radio so it looks like we made the news!  This helped create awareness not only for what Mike was doing but the disease itself.

Fun Fact: NO ONE ever has 1 cluster headache. So if you think you had 1. You did not. This is a very rare neurological disease of the brain in the hypothalamus. This isn't adjustment with a back crack or by drinking more water. There is NO CURE. and most of us cash out, try it and don't succeed. Please for the love of all survivors out there. Never tell anyone of us "Its just a headache". They don't do multiple brain surgeries for just a headache. No NARCOTIC on the planet is strong enough to stop one of these. Typically, pure oxygen with a non-rebreather mask can help shorten an attack. Pscilocybin has been a very effective treatment but again not a cure. There is other treatments that are beneficial yet not everyone reacts the same to medications. not everyone can tolerate it and others it doesn't work or stops working. Please understand I have my own version of this disease and if sadly you have it then you have your version. No two cluster heads are the same.

Mike had cranked out over 100 cameo videos, we had raised almost $9500 on GoFund Me and at the last minute Redecan.ca the largest marijuana producer in Ontario found out about this and offered return airfare. Incredible. It was happening. for the first time in years I had HOPE. People say all the time. I hope it works out, or we hope to see you again. That is not the same thing as holding on to a thread for dear life and someone offers you HOPE.

All this was happening so fast. Our heads were spinning. It was surreal and hard to comprehend. I felt like a celebrity because people were talking about me. It was weird and very overwhelming. I can totally see why some celebrities have difficulty handling everything. Overwhelming doesn't even justify the emotions we both felt.

Next thing I knew Mike had made a detailed itinerary for us as neither of us had been to NYC let alone anywhere in years. I was scared. But Mike took care of every detail from the flight to hotel to food to taxi. We could have NOT done this without him.All the time the set aside for us from making GoFundMe to cranking out videos and setting all of this up he did by himself on his own time. I never once asked for anything. He did everything.

We flew from here in London Ontario to New York and had Stem Cell Treatment.

The procedure was easy. They said it might hurt or pressure but it did hurt. Not much but a poke and sensation that I don't think I have ever experienced so just a foreign pain which I welcomed with open arms considering the last 15 years, and having my head drilled into awake. So to me this was easy peasy.

The nurse came in, prepped me and then Dr. Calapai came in, froze the area and then removed bone marrow. We then waited for the stem cells to be extracted. The nurse came in shortly after, gave me an IV and then I had a nasal canula type inhaler for stem cells and then last a nasal drip into my brain.
I think a total of one hour and a half there? It happened very quickly. I regret not getting a photo with Dr.Calapai.

Literally the next day my "Aphasia" reduced 80% overnight. Aphasia is something that started about 6 months prior to all of this and was progressing everyday worse. Aphasia is difficulty speaking, either a stutter like or can't get words out of mouth. 6 months ago it started once a week then once a day then it got so bad it happened almost every time I spoke. Also the doctor asked me NOT to take any anti-inflammatory for a month. Which I welcomed because Id eat 6 a day just to walk because of my back and scatica. Literally overnight 50% sciatica pain gone. It still  hurts and its borderline take a pill but because I hate pills I just rather suck it up. I only took Robax (Costco brand) so I could get out of bed and walk. Sciatica pain is relentless. I got 4-5x a day spikes where it could be so bad you could shed a tear. Well, I haven't taken 1 single anti inflammatory since I been home. Only once I thought I wish I could take one but did not. Pretty fucking good if you ask me.

So the first night there after treatment I was wound for sound,  pure adrenaline ! I usually am in bed by 9 so it was midnight, I had NOT taken my 9 pm meds for my head (torodol) and thought maybe I should not take my pill and see what happens? Stupid mistake as Stem Cells only been injected less than  12 hours ago. I paid for it dearly the next morning puking and lost 7 hours in bed feeling really bad. I guess I got overzealous. After that, I thought ok Ill try again in a coupe months but cut back on dosage. Ill give the stem cells  chance to heal me. I realize I was just excited.

So now its June 4 as I write this. My aphasia is gone 90% now. My back is slowly getting better. Being spring I am trying to walk my dog weather permitting everyday. I know my head and the 4 different headaches I survive ( Clusters, Migraines, Tensions and 4th undiagnosed headache) will take some time. The stem cells can take up to 2 years to be at maximum effect and I am OK with that. I been sick almost 15 years. What is another 2 years? Nothing in hindsight.

One thing that I never expected was this gift of joy. I literally have woken up every single day with a gigantic smile on my face. I forgot how much I never smiled anymore. How I lost that. My family has noticed the change in my demeanor, my character and overall well being. I look back at the last 15 years and its a shock I am still alive with what I went through. I was told by everyone I was a bad ass mofo who was strong. Yet I never once felt strong. I felt weak and defeated just about everyday of my life. As if I was drowning and only  breathing through a straw getting a gasp of air every so often.

I rarely complained to the people I love how bad it was....and it was. no human should live the way I did. No one should suffer that much. It really is a miracle I am still here.  The disease took so much from my life. I lost a marriage, friends, a career, my son, my ability to travel and enjoy life, My self worth and mental health, and my vanity. I've lost over 25,000 hours of my life bare minimum. Do you know how much 25,000 hours is? That is almost 3 years of my life. I been sick for 15 but 3 years was 100% suffering from just Cluster headaches!!!! That is a low bare minimum number. So for the next 3 years of your life you will suffer every nano second of every day of every minute for 3 years.Eventually it wears the strongest of humans down. Put that into perspective for a moment. Have you ever rammed your head through drywall because your brain hurt so bad you wanted to knock yourself out? Ever punched yourself so hard you gave yourself a black eye? Ever broken 4 headboards from pain smashing your face into it? Ever had  a headache so bad you wanted to kill yourself just to stop the pain? Have you ever jumped in front of a bus because you seen no hope? Have you ever been afraid to go to sleep? I have for 15 years. Everyday.Have you ever planned your own suicide? Ever had a disease that was invisible and some thought you were faking it or playing it up?  That is a Polaroid snap shot of my life. That isn't even 1/1000th of my life.

This all changed in April this year. When a friend reached out and offered help. At the absolute lowest part of my life. I was planning to die on my terms. I wanted to die because I had enough, my quality of life was diminishing by the second. My hope was gone 100%. I was ONLY trying to see midnight and my wife's love could no longer keep me here.

That all changed when Mike offered something no one has offered. HOPE.

At first I didn't take him seriously. Why because how could he help? I knew who he was but how? When he said he knew a doctor personally who wanted to hear my story, I felt I just won the lottery. I was literally planning my suicide  just before Mike spoke to me. Mike knew I was sick. But not how sick. I've never asked him but as far as I knew he only knew about the clusters. Not everything else. When he found out i think he fully understood how serious I was in dying and how bad my life was.
He knew right away I wasn't depressed. I wanted to live but why? My wife and I could barely plan a movie on the weekend. Every time we would pre pay movie tickets we knew most likely we couldn't go. We had not been anywhere in years. The highlight of my week was usually getting roasted chicken at Costco if I felt well enough to leave. Yet if people seen me getting groceries they thought there is nothing wrong with him.

I haven't even mentioned isolation of being sick. Anyone who is sick will understand people don't call, don't visit, don't ask anymore. Dunno what to say. So, it is what it is. Whoever is healthy and reads this please take my advice.....facebook is NOT real life friendships. If you have a sick friend, human contact is what we need. Not some stupid fucking meme or poke. Not even texting. GO FUCKING visit them. I see more doctors in 2 week period than I see in a year!!!  I deleted 300 people off my facebooka year ago. Why? I had not heard from them in over a year. Not once. I wasn't on fakebook for popularity contest. Then when I ended up on TV with all of this the facebook friend request was overwhelming. I thought to myself, where the fuck you been when I was suffering?
And because I am friends with a celebrity? My real friends were my friends before this and will be after. The dumbest question I been asked is "Where you been?" I fail to understand the question as I am sick and you are healthy so please ask again in a way I will understand! I know I was there for them when they had struggles in their life. I must be a really shitty human being for people to not visit me.

My 3rd brain surgery, was a result of an infection travelling to my brain. So they had to remove everything and then re install everything which meant a 4th brain surgery. So its literally my 40th birthday. Yup, the BIG" Four O". I'm laying in the hospital room on my side. I wake up and can hear my wife crying relentlessly. I ask whats wrong? She says nothing. I said is it the staples in my head? No, is it my chest? No. Why are you so upset?.....Where is your friends? She asks. 4 brain surgeries, 1 40th birthday and my closest of closest friends of 25+ years no where to be seen or heard of. So personally I know it felt to be abandoned. Yeah a shit story. Yeah it hurt, Yeah it sucked. But they have to live with it, not me. Cowards and nothing more.

So this opportunity for Kristen and I to have a better quality of life was welcomed with open arms. Even if it didn't help. I was 100% willing to try and keep trying because ultimate Mike saved my life and I was grateful beyond words.

I know my head will take time. It may not help me, but it may help me have a better quality of life. Taking away the aphasia was nice but it wasn't pain. Taking half my sciatica pain away meant immediately less anti inflammatory which means less stomach aches.  Mental health is 100%. I have not felt this alive in 15 years, Seriously. You can NOT punch the smile off my face. The moment my eyes open I am smiling. I go to bed smiling. I smile during the day for no reason. I can't remember the last time I have done that. Even my wedding with Kristen I was struggling to make it to midnight and feared attacks.

It has been just over a couple weeks now. I look forward to the next 2 years of getting better everyday. I look so forward to the future now. We have even planned things this summer. Something I haven't done for years. My wife deserves a healthier me. She has been by my side from the worst of it and I am so grateful she is here to see the HOPE we share together. She never ran off like a coward. She has never once complained to me about my health and has always put a brave smile on for everyone else. She is an unsung hero PERIOD. Mike is my hero. And will always be.

As for anyone who thinks Mike shoulda paid for everything outta pocket or think because he is doing well its his nickle.....remember he saved my life first for free. He made over 100 videos on his time and uploaded and sent each video on his time. Mike took care of every single detail from the flight to hotel to food to taxis and places to go see while there. He literally texted me 100 x a day to ensue everything went smooth an concise and even now we talk about my health and how things are going. All this while working full time, raising a family and all the obligations that go along with his life. Yet every text I sent him I felt guilty taking time away from his family. He never once complained to me or said back off. I know Mike lives a life Ill never understand and I live a life he doesn't understand fully. But that doesn't matter to neither of us. We are friends. That is it. That is all that matters to me I wish him more continued success in life and not remotely jealous of his success or lifestyle nor will I ever be. I am happy for him. What is in someone's wallet means jack shit. What is in someone's heart does. How you treat others is how you are remembered.

In time I am confident my health will get better. My goal is to get off Torodol. Its destroying my kidneys and the 1-3 hour a day bathroom I am really tired off. If I get off Torodol, that means my head will be better, my kidneys will be better. I wont have 3 hour bathroom visits. I will sleep better and not on a controlled sleep patter as  everyday of my life is controlled when I sleep and wake up because of this damn medication. I can not sleep in, I can't go to bed early and within hours without the medication I am throwing up moaning in bed lifeless. I hope in time ill get better. If not, back to the drawing board but I can check off how other things got way better.

I am hoping this ends up in a documentary to help others who lost hope. To help those considering Stem Cell therapy as a positive experience to help them with their health. In fact I have refereed 2 people already to Dr. Calapai! I have a buddy who really could benefit from it.

That is the ONLY thing out of all of this I really wish that could happen. I have friends who are sick with other health problems and I would love nothing more than to see them get treatment too, It sucks getting help and not being able to help those you care about.  That would have been the one wish I had through all of this is to help others.

You maybe reading this not knowing who I am as a person but I hope you comprehend how grateful I am at this. I never asked for any of this and know 1000% how lucky I am.

I thought this blog today would update some questions people have had about my treatment.

I am so so grateful for every single person who helped with this and know your investment in me is working. Kristen and I are humbled beyond any measure of words. We thank you from the bottom of our hearts. I owe my life to Mike and there is nothing I wouldn't do for him. Thank you www.redecan.ca for the flight, thank you Swearnet/The Trailer Park Boys for all the support, thank you to everyone who donated and especially for my wife for never giving up on me.

Never give up hope. Your life can change in a nano second for the better.

Thank you everyone.





















Friday, May 10, 2019

Go Fund Me started by Mike Smith aka Bubbles from The Trailer Park Boys

If you know me personally, or follow my journey, than you are well aware its NOT just cluster headaches I live with. It is much ore than that.  Chronic migraines too, as well as Sciatica, neuropathic pain and so much more than that. Pain is pain. In many forms,levels and severity. In 14 years I haven't gone a day without some sort of severe chronic pain. But this isn't abut trumping anyone's pain.

I have become friends with Mike Smith, the actor who plays Bubbles on the TV/Movie series The Trailer Park Boys. Aside form being a huge fan, I am also his friend. Yes, he means that much to me. If Mike was a plumber, he would still be thought of equally.

Now here is the harsh part to read but true.

December 31,2008 when I jumped in front of a bus in Miami, I thought then I was at the lowest of low I had reached. Since this past September, my last appointment with the pain clinic was my last and final hope. But they told me there is no more tests to be done, no more referrals, n more nothing. and Sir" We are very sorry, we do not know what is wrong with you and btw, the medications you are on will end your life sooner if you continue to stay on them". Before anyone worries, they are NOT narcotics. Narcotics do not help this pain. I have been offered everything.

Everyday, I got a bit worse. Not much but day after day, week after week, month after month, And after years of fighting an additional pain on top of all the other things were taking a toll on me mentally and physically.

My wife worried everyday, wondering if I would still be here when she got home from work. I would tell her, don't be sad when I am gone one day. Be happy I am no longer in pain. My fiend who passed away last month understood this. His passing, I wished it was me.

I am not depressed. I am in a circumstance that would kick anyone's ass. Isolation is probably the worst. It has only added to my heart break.

I was really struggling bad. And one day a friend was like "Hey Man, how ya doing?". And I basically verbally diarrhea all over him. I could have lost a friend by dumping this all over him. And at that exact moment. it could have been anyone on the other end listening to me cry. That person was Mike Smith. I do not refer to him as an actor, a celebrity or a Trailer Park Boy. He is Mike to me. I love him.

Mike reached out to me as a friend and offered help. At first I was like thanks Bro, ad then realized he was serious. Dead serious. The very first thing he said to me was " I don't want any acknowledgement, I don't want this about me". He said . "I am going to do everything in my power to help you". An offer no one has given me after I lost all hope.

Mike literally saved my life. As much as I love my wife, she can't fix or heal or take my pain away. Only sit there in horror.and watch me suffer helpless. My wife deserves way better than this. She deserves a healthier version of me.

Within a couple days, a Go Fund Me was up, he is making  personalized videos for fans on www.cameo.com (links for all below). and is doing everything in his power to help.

I am still in total shock, awe and we both are so humbled by his offer, kindness and generosity.

In the past few days of watching the video,ad watching donations come in, we are so appreciative of every dollar raised, every tweet, Facebook share, everything that everyone has contributed. Kristen and I are so grateful and humbled. Thank you everyone!

I make less than $10,000 a year on CPP disability.  So any dollar raised means as much to us as much as more than 1 dollar raised. Equally grateful no matter what amount. I know $5 for some is a lot as it would be to us.

We plan on heading to NYC to a friend of Mike's who does Stem Cell Therapy to try to help me. This Doctor has taken great interest in my case and wants to try to give me a better quality of life. We both feel in our hearts we won the lottery. I know I struck gold with my wife but twice? Yes, I am eternally grateful to this man, and my wife for struggling with me by my side and never once ran off like a coward.

Not all super hero's wear capes. Some wear thick glasses and love kitties.

Here is the links.

CTV London News story CLICK HERE

GO FUND ME CLICK HERE

To book BUBBLES for video message CLICK HERE






Friday, April 12, 2019

Celebrate the strong women, not the weak cowards!

First, Happy Birthday to my best friend, my UNSUNG HERO, my everything. My wife.  Today is her birthday. Today, I celebrate one of the strongest women I ever known next to my mom.

Monday, March 11, 2019

I loved a friend I never met.

I get contacted from people from all over the globe. Whether they have cluster headaches, migraines or just another rare disease and health issues. Yes, I am contacted by all sorts of different people.

So a couple years ago a

Saturday, March 9, 2019

Slowly Slipping Away.

No, it's not the song from the Toronto band Harem Scarem....it is me, unfortunately.

This is a subject I rarely talk about and as things get worse I feel it's imperative to write it down before it gets worse.

I am talking about....

Sunday, March 3, 2019

I was the first

I am a barber by trade. I went to school in 1992, got my apprenticeship out of school. Completed the 3500 hours required. I wrote my test and became licensed in May 1995. Even before I got my license I knew one day that I have my own

Wednesday, February 27, 2019

Hero's stay, cowards run!

I am pretty confident any person who is sick has dealt with heroes and cowards. So which one are you?

Thursday, January 17, 2019

Letting go

Accepting someone's behavior and path is just only part of letting go. Choosing to support that behavior is not letting go, it is enabling it.

There came a point in my life when letting go is

Monday, December 31, 2018

Good Bye........... 2018

In less than 24 hours for everyone it will be New Years Eve and 2019 will be here. I would like to reflect on the 2018 year with you.

Saturday, September 22, 2018

into my 4th year of waiting Doctor finally told me...

I been sick 13 years. I got this new head/neck pain over 3 years ago which greatly reduces the quality of my life. And now it will reduce the...... WATCH HERE

After watching my video I would like to stress that I never gave up. they did.
So please stop assuming it was me who gave up.

Tuesday, September 11, 2018

Angry? Disheartened? Frustrated? PISSED OFF !!! All the above and more.....

I am the 1st to defend the health care in our country. I am the last to complain. I considered myself very fortunate and blessed to be sick in this country.

Sunday, August 26, 2018

3 years ago today. I lost my mom to brain cancer.

At some point in everyone's life we loose a parent. Never in a million years did I think it would be this hard.

July 23, 2015 I found both my parents in

Monday, June 18, 2018

Interviewing an UNSUNG HERO ! 5km walk for #CureForClusterHeadaches

I can not begin to tell you have happy I am to see soe many get involved with fund raising for cluster headaches.....ClusterBusters INC to be exact. It so warms my heart. I love seeing people get proactive and get out there and help, make change and be positive for a disease that ultimately drives people to Suicide !

Todays Blog/Vlog is about doing this 5k walk (2.5 for me and 2.5 for my wife) and sharing what its like from her perspective. How she feels about what I and others go through, stigma of being sick with an invisible disease, brain surgery to natural medicines !

Listen to an unsung hero never complain, always offer help, love and support and you will understand why I married my best friend.

                                                                          CLICK HERE

Wednesday, May 2, 2018

It has been a minute....

Pain Free Wishes as always and sending my best positive vibes and prayers to everyone in pain.

My blog has taken a bit of a back seat since I started VLOGGING over a year ago. Making video's consumes alot of time and effort. Also having a subject to vlogging and a message is very important.

I have always prided myself in

Wednesday, March 14, 2018

This wasn't supposed to happen to me, I did not sign up for this sh!t

                                  Please Share, like and subscribe to my channel. Click here

                                                                  #StayPositive

Monday, November 13, 2017

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.

Sunday, June 25, 2017

1st time ever Medical Marijuana prescribed !

If you have read this blog before you already know I live with a bunch of things. Cluster headaches, migraines, tension headaches, PTSD, IBS-d, anxiety, exzema, and sciatica.

Thursday, June 1, 2017

Monday, May 8, 2017

People In Pain VLOG Living in chronic pain positively

Back in November, I think I started a daily VLOG on YouTube called " People In Pain" on my YouTube channel "ClusterHeadSurvivor" (no spaces).

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.

Friday, December 30, 2016

We did it, thank you to everyone who reads this.

Wow, I can't believe this. I am so humbled beyond any measure of words. It is kinda surreal and hard to digest but thank you.

Tuesday, December 27, 2016

Trippin' With Leigh Documentary on Swearnet.com

This blog today is about the multi-talented actor and singer Leigh MacInnis who also happens to be my friend. He is known for his hilarious portrayal of the character's Don and Donna on Trailer Park Boys seasons 8 to 10.

Monday, November 21, 2016

Started a new video series. Filming life of "People In Pain"

This is a project I have wanted to start for awhile. I may have been one of the original cluster heads filming myself and posting videos on YouTube and there are many Vloggers out there filming their daily life. But I have not seen videos of people living in pain.

Thursday, October 6, 2016

The cost of being sick

I won't bore or shock you with actual numbers but if you need to know message me. The amount I live on per year is way beyond below poverty level. Fact. This is a fact that almost all Cluster Heads, really anyone who is sick deals with unless you have some sort of great pension plan or long-term disability from the company you worked for. That isn't the case for me. That isn't the case for many.
It's a sad reality that almost every one of us looses our careers, homes, relationships due to hardships brought on by costs attributed to being sick.

Monday, September 19, 2016

PTSD Post Traumatic Stress Disorder

Imagine being on a roller coaster without a lap bar or shoulder harness, spinning upside down, swirled around in circles like a Gravatron at a fair and the floor drops. You want to pass out. You have no control. You feel frozen in time yet want to die or the ride to stop at any cost. You can not control the ride, your emotions, thoughts, feelings and feel 110% helpless. All that happening while replaying what terrified you in the first place and then it plays over in your head over and over and over. Reliving the event every time.

Saturday, August 20, 2016

GO F*(% Yourself Blog....I take advantage of what you take for granted.

Quite the blunt statement with such profanity.....well there is a reason.

This blog is not written in haste in anyway shape or form but a true reality of survivors lives dealing with the general public.

Friday, August 12, 2016

Celebrities, average Joes, survivors & supporters on Cluster Headaches.Updated !

I have had some great success with awareness and advocacy in the last 11 years of being sick.
And some might ask why tell a celebrity who isn't sick about a disease they never heard of? Its the same reason I tell average Joe's about Cluster Headaches. Except celebrities have the ability to reach a greater audience than I ever could. And I will explain that a a bit further.

Monday, July 11, 2016

Sunday, June 5, 2016

Coping with Cluster Headaches

Coping with Cluster Headaches.....

If you are reading this, and have cluster headaches. You are coping right now.

Saturday, May 28, 2016

Buster

Buster, re born Nov 18,2012 and passed May 28,2015. 1 Year ago today.

Why are you reading about a dog that died? What is it in relation to cluster headaches?

Grab a tissue box, it will tug your heart strings.

Sunday, April 24, 2016

Never miss an opportunity

I don't know if its because I am older and I think ahead or what but I never miss an opportunity to help others if I can.

Tuesday, April 5, 2016

I survived 44 Years.

44 years ago my mother. Mein klein muter (German for my little mom) gave birth to a healthy baby boy

Monday, March 14, 2016

CH Readiness KIt

Having a neurological disease is a way of life. Always preparing yourself for home or not home attacks.

Friday, March 4, 2016

Wednesday, February 3, 2016

Dedication to those who help with us.

Those left behind from suicide often leave devastating effects on loved ones. Family members often question why or what they could have done further. Some didn't know. Some didn't see it coming or believe it was that bad.

I have seen what suicide causes.

Tuesday, January 26, 2016

Death, life after.....

This disease is 200x the national suicide rate. I have lost sooooooo many Cluster Heads. And sadly will loose more.

Friday, January 15, 2016

Why me?

Why me? If you have any type of disease, illness, ailment. I can almost bet you have at some point asked yourself, why me?

A question that has been asked since time began....

Saturday, December 26, 2015

Helping the homeless

Before you even remotely think this is about us, it is not. Its about them, the homeless. It doesn't matter why they are there. Just that we help them.

Thursday, December 17, 2015

Suicide-A permanent decision to a temporary problem

Suicide. Ending your life is a permanent decision that is irreversible and over a temporary problem. It ends all chances of being able to help fix whatever the reason is for wanting to die.

Wednesday, December 2, 2015

Loss

Loss comes in all forms. I lost my keys, I lost my phone. I lost my to do list. No, those things are mis placed. Not loss. Loss truly comes from feeling of absence. Robin Williams used this line in a movie once and he said it to Matt Damon. "Loss truly only happens when you love someone more than yourself". And that hits the nail on the head.

Wednesday, November 25, 2015

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......We still need your help

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......This disease takes no favorites.

In recent news it has come to light a very famous actor and athlete have come out and stated they too have Cluster Headaches.

Thursday, November 5, 2015

"Busting" the Beast-Citizen Science-Our Hero's Bob and Dan.

Before you start reading. Understand what I am writing and showing with these videos, that this is about a disease. For those with this disease, like me, we are very sick. This is not about recreational use of drugs. Because if you remotely think that remove your head from your ass.

Thursday, October 1, 2015

Being a Cluster Head as a dad, son,spouse, friend, and stranger

I often write about the effects that Cluster Headaches has on myself or what it has done to me in my life. What I have not written about is how we are as a Cluster Head by being a parent, child, friend and stranger to others.

First and foremost.

Wednesday, September 16, 2015

Death- Being Remembered

I guess you could say since my mothers passing that death has been on my mind alot lately. People do tend to ponder about life after a loved one has passed.

Thursday, September 10, 2015

Cluster Busters Conference 2015 Chicago USA

As this year approaches for the Cluster Buster Conference in Chicago I URGE you to attend. Beg, borrow and go.

The Cluster Buster conference is

Sunday, August 30, 2015

RIP mom

Aug 26, 2015 my mom. Mein Kleine Mutter has gone home to the lord after a 33 day battle with brain cancer.

My mom was my life and my family and I will miss her immensely and very deeply.
If you met my mom and knew her she instantly became your friend and you would walk away with a full belly. She had spent a large portion of her life as a chef. Mom had served Queen Elizabeth twice in Germany. But served as a wife and mom every chance she could. Mom spent her life being an incredible loving supporting wife to my father of 52 years. A mom to me for 43. A mother in law to my wife for 5 years. And an Oma to my son for 16 and last her shadow,her dog.

From the moment my mom entered University Hospital here in London Ontario, the emergency staff, the 7th floor staff in neurology and the palliative car staff was second to none. Impeccable. They treated me with such dignity and care from telling me my mom was terminal within 12 hours of arrival to taking care of my dad at the same time 3 floors down in General medicine. My dad was brought in with my mom at same time in 2 ambulances. As extremely chaotic as it was my wife and i were cleaning out their apartment, packing, cleaning, selling and bringing their stuff to the hospital, our house for dad to live in, driving from our home to the hospital, back home then their apartment across town. It helped us so much that dad was under the hospital care for 12 days as we could wheel him up in the wheel chair with IV pole to see mom. And eventually a wheel chair and then walker for dad. Having to make arrangements for mom, dad and find a renovator all while trying to visit mom was insane. I can't even explain it.

The erie part of all of this was mom was under the same surgical team as I was. Despite mom being terminal and inoperable we had the same neurosurgeon caring for mom. Mom was in the exact same room and bed that I was in for my brain surgery. It bothered me the most but was comforting at the same time. I can't really explain it.

I sincerely want to thank every single health care worker that came in contact with my mom and dad. Especially Fritz. He had worked with my mom at the Kiwanis Centre. It was moms last job cooking there. She retired after that. My dad had worked with his dad back in the 70s. My mom babysat Fritz when he was a young boy. Having Fritz there was comforting very much. He having lost his parents helped my dad and I cope when we both had a hard time coping. He explained to my wife and I the dying process and it was easier to hear from him since my mom really liked him very much, Thank you Fritz. If you ever read this my family thanks you from the bottom of our hearts. I also want to thank those who are always often missed. The porters, the Voyageur drivers who brought mom and me back and forth every time to the Cancer Clinic, The oncologist, The nurses, PSWs. Everyone, thank you for a thankless job. I really mean it. Many many times I had to leave the room in tears being unable to cope with mom needing help and the hospital staff took care of everything. Thank you. A special thank you to the Nurse Practitioners at UH for helping mom get to palliative.

While all this was happening. Dad being on 4th floor and eventually coming home to live with us and all the medical staff who came to my home to help dad. While all this was happening. My wife and I and dad had to watch the mother, I so dearly love pass away before our very eyes everyday. We did this alone with no help from no one. Everything was done by myself and my wife. Not a single person helped us. But really who could. Only the people who were in my moms life mattered to her and us anyway.

The out pour of support we received from neighbors, from my club brothers, from my fellow Cluster Heads world wide and my in-laws was greatly appreciated. While none of it was physical or decision making, It was comforting to know how much my mom was loved by so many. How much at the end of the day of my head constantly pounding a simple card, email, plate of cookies, or card meant to us.
It also surprised the shit out of me how some said absolutely nothing. Not even sorry for your loss.

The only complaint we had over this was the Ontario Cremation Service who at first said they would take half the payment for the cremation and then changed their mind and demanded full payment only after we signed. Nor when we called to have mom taken from the hospital did the moran on the phone offer a single condolence. DO NOT USE ONTARIO CREMATION SERVICES.

Cancer is a dreaded horrible disease. Why people still smoke after watching this happen just baffles me. Whatever excuses people give is just that. An excuse. Excuses are only good tot he people saying them. If you smoke, quit. No excuses. If I can quit with the worlds most painful disease known to medical science you can too.

Mom was cremated and there will be no funeral, no wake, no gathering. It was moms wishes and dad, my wife and I will honor her wishes. I have the same wishes. Mom said to me if you didn't come see me when I was alive don't bother now I am gone. I feel exact same way. Mom was nor bitter nor upset about that. Mom was 100% at peace with her decisions and life.  She was a fantastic mother to me. Incredible Oma to my son.

I remember so many times of my mom making forts with my son when he was little or taking him bowling, or taking him to get candy. She treated my son so well. Always, and I mean always made sure he had a full belly. pocket full of money and hugs and kisses. She spent time with him every chance she could. I don't even think to this very day my son knows how good he had it, I myself never knew my Oma or Opa.

My wife was so blessed to have her in her life for the 5 years. She was mom to her, My mom truly adored my wife.  They say men marry women like their mom and its true. My family knows I struck a home run with her. My wife is as grieving as all of us for losing her mom too. I can not thank my wife enough for being so grounded, so helpful, so caring, supporting to me throughout all of this when others where completely absent. But my wife and I never have to worry about living life with regret,

My dad. Where do I begin? Dad went from being unaware of where he was from first admitted to hospital for 4 days to loosing his wife and now living with his son and daughter in law in 1 month. After 52 years of marriage, raising a family, travelling the globe with his best friend to now watching her pass. How my dad is keeping it together I am at a loss of words. The only thing I foresee is time. No one ever "gets over it". But we learn to live with it. Dad said in the hospital if its what God wants, Its what will be. We lost mom but heaven gained the best. We in this house are Christians. We beleive in our hearts 100% that mom is in heaven.

I pray Elvis is singing to my mom right now with my dog Buster. Mom is no longer in pain. My mom lived many many years in great pain from knee replacements to bad arthritis to just getting older. She told me she was not affraid to die.

The day before she passed she had completely stopped talking and eating the day before that. Rarely I had any alone time with mom, Because we were always there together,

I had mom alone and said that we would be ok. That I loved her with all my heart and would miss her but we were at peace with her leaving. I begged her for a sign to let me know she was ok. She opened her eyes for a split second and lipped "I love you" to me. Last words she ever spoke.  She gave dad a kiss back on the day of her passing.

I played Amazing Grace by Elvis as we were with mom and read her Psalm 23.

As we said our good bye to mom, I turned around and looked at the door way of her room. Whether you think I was under duress or making this up I know what I saw. My mom was partially poking her head out of the room with a glow around her head like a light from heaven. She waived at me twice and smiled. I know what I saw. I could care or less if a single person believes me. I saw my mom as an angel. I do not need to prove it. I saw it. I don't care if a single person believes me either.

Now we must continue on in life. I only ever wanted one thing from my mom and dad and that was for them to be proud of me. I promised my mom we will be ok. And we will in time, For now the renovations on our home will be finished. Dad will have his private space and we will be there for dad for as long as he needs.

Mom, I will continue to be the best son to dad, the best husband to my wife and dad to your grandson. I will continue to advocate for my fellow Cluster Heads world wide and make you proud and make a difference in this world. I dedicate this all to you momma. We all are going to miss you beyond words. I will see you again in heaven mom and then I wont have any more attacks/headaches.

Until I see you again mom, I love you







Saturday, August 22, 2015

Cancer

Cancer, yes the "C" word. I have never heard of another person not knowing someone affected by cancer either directly or indirectly.

Cancer is the  mothership of all diseases. It is the disease that is the most funded for research yet takes lives in multitudes every single second around the globe. Yet there is no cure just prevention and care. I am not going to blog today about the possibilities of cancer cure. Because there is so many different types of cancer unlike my disease the only difference is sides of the head unless you are super fucked and get attacks on both sides. But today this blog isn't about Cluster Headaches.

Saturday, July 25, 2015

Today is my 10 year Anniversary of Cluster Suicide Headaches and today being worst day of my life

Wow, 10 years. I been debating to either celebrate this or be sad. 10 years of my life taken from me. Yet I been given something profound in place. Will get to that later.

Saturday, July 11, 2015

Family, Divorce, Lost Relationships, Employment and Cluster Headaches

I been wanting to write this for awhile but wasn't sure how to approach the topic simply because I did not want this blog to appear as a cry for pity or sympathy when in fact its factual statements based on events in my life instead of my own beliefs.

Wednesday, July 1, 2015

What it means to be to be a sick Canadian. Happy Canada Day

Debatable, controversial and proud. Health care in Canada.

To me, as a proud Canadian, I couldn't be happier being a Canadian. A sick Canadian at that.

Tuesday, June 30, 2015

Please support my friend Leigh MacInnis who supports us Cluster Heads ! Donate today !

My friend and actor Leigh MacInnis from the TV show Trailer Park Boys is doing a documentary on with hallucinogenics and spiritual medicines. Why you ask to help donate?

Monday, June 29, 2015

Cluster Heads are the absolute strongest people I know.

I am sure you have heard the slogan or term "Whatever doesn't kill you makes you stronger". Or "God only gives us what we can handle?".

Friday, May 29, 2015

RIP Buster

Last night, was absolutely one of the hardest days of my life. I dug a grave for my dog. Mans best friend. My Buster Boy.

Wednesday, May 27, 2015

If it has wheels and a motor. It turns me on more than my neurostimulator in my brain !

Discussing my life with Cluster Headaches is one thing. Living with them is another. Once in awhile I blog about what hurts me, what makes me happy and what I love besides my family. Sadly this story ends on my disease.

Thursday, April 9, 2015

Cluster Headaches are NOT Cluster Migraines. Migraines are NOT Cluster Headaches

I would much rather prefer to read layman's terms myself, and generally that is how I write. The percentage of physicians and medical staff reading my blog is probably pretty low so I write for the survivors and supporters....

Monday, March 30, 2015

My blog, my thoughts, my feelings, my words.....

I do not always say what I feel, what I am going through, but I think more than I say. And if my silence appears as nothing, it possibly is more than some could handle. Silence is bliss right?

I know more than I speak, listen to more than I say. And I do notice things. Sometimes, I choose to say nothing.

Monday, March 23, 2015

The 5 stages of loss. Which includes loss of health.

I guess its safe to say many people have experienced some sort of loss in their life from death of a loved one family or friend and loss of a job/career. Which is pretty normal wouldn't you think?

What no one prepares us is for

Monday, March 2, 2015

less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting

Less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting ! Yet over $ 1.872_BILLION has been spent on MS. In no way shape or form am I demeaning MS yet comparing MS to Suicide Headaches. The similarity is that CH and MS have the same disease rate of .01% of the world. This is my justification for comparison in disease rate only.

Tuesday, February 24, 2015

Wednesday, February 18, 2015

Im glad you are reading this....

It makes me so happy you are reading this....

The most awesome thing about this blog is that I can see who and where is reading this.....

And it motivates me even more.

Stay tuned......


Monday, February 9, 2015

Raising Awareness on CTV news - Segment on Cluster Headaches

I wake up each day smiling, living life to the best of my ability, I at how such a beautiful woman chose me and to live with a loving man that has such horror. How my son was born into this without any choice, yet he  inspires me each day to give back and pay it forward. I realize that despite my cards I am dealt, I am a very blessed man.

My life is a gift from God and I know that what ever I do today is because of him. I love life and I love to help others the best I can.

I know some people are best suited to remain quiet and that is ok, Its in me to speak out for those who lost their fight. Lost their will to life so they did not die in vein. Today, I dedicate this to them......

Click Here for news cast



Saturday, January 17, 2015

Suicide....the taboo subject to talk about.....RIP Scott, Melissa, and so many others.

With great sadness and displeasure I once again receive news of another cluster head taking their own life.
This is becoming a monthly notification for me and others. It is with great sadness, heavy hearts we lost one of our own.

Friday, January 9, 2015

2015

It is only January the 9th and I am astonished what is taking place globally. Seeing cowardly acts upon us. It is frightening. Sad and tragic. The world is changing.

Tuesday, December 23, 2014

Merry Christmas and Happy New Year.

Glad tidings and blessings to all my fellow Cluster Heads, UNSUNG HERO's and family and friends.

Wow, what a year 2014 has been. So many things have happened in the past year. Globally and in my life.

It has been an enlightening year, educational, uplifting and blessed.

Wednesday, December 3, 2014

Paying it forward. Michael J. Fox "Lucky Man" and Cluster Busters for Cluster Suicide Headaches

Paying it forward
Win this book "LuckyMan" by donating  to michaeljfox.org & clusterbusters.org help find  cure to 2 both diseases

Tuesday, November 18, 2014

The Voice of an UNSUNG HERO-Survivor's wife.

Today, November 18, 2014 is our 3 year wedding anniversary.  3 years ago I married my best friend. I'll never forget my first date. Jumped on the Harley and headed to Merla Mae Ice Cream. As we sat that getting to know one another I thought wow, I really like her. I kept thinking, should I tell her I am sick? Should I tell her what happens to me even though she won't comprehend it?
I have hid my attacks before dating and when they happened the girl got so freaked out she bailed on me. I have dated other girls and told them I was sick and they bailed on me. But my gut that day said tell her.

So, it went something like this..

Monday, November 17, 2014

Advocating my disease, leaving my footprint for future cluster heads

It takes a long time for any person diagnosed with any disease to accept their fate. To not only stop denying or asking why me but turning it around to 'Why not me?". It took me along time and a good book by Michael J. Fox "Lucky Man" for me to change my outlook and perspective. No longer wanting to die.

Thursday, September 25, 2014

Cluster Busters Conference 2014 Nashville Tennesse

Hey ya'all. Does my southern accent come through in my words? Just kidding. I love the south and every time I can go, I just look forward to it. I love the mountains, the people, the food. Oh god, the food. I ate pulled pork just about every single day there. Can't get enough of it and only recently in the last 2 years we just got a southern restaurant here.....

Its been 1 week now since I first walked into the meet and greet and was in a room where literally not a single person had to speak. Everyone of us could have kept our mouths closed and not said a single word verbally yet had a conversation.

Thursday, September 11, 2014

Busting

Wow I bet you were not expecting this from me eh?

Let me first tell you that June July August 2014 was the worst months of my cluster headache career in over 9 years chronic.

Friday, August 15, 2014

Suicide ( part 2) RIP Robin Williams

I can't begin to tell you how deeply affected I am about Robin Williams passing. For many reasons...and really. Its not because I am comedic myself or the fact I loved his work as a comedian or actor. Or for his philanthropy. Its because....

Thursday, July 24, 2014

9 Years Today I have had my first Cluster Headache. Non stop since. I am alive today.

9 Years sick today with Cluster Headaches aka Suicide Headaches. Before you continue to read this. I write this with a sound mind as I can with zero aspirations of any pity. Only awareness. I wrote this on 1 hour sleep. Do not be alarmed. I am getting accustomed to sleeping 2 hours or less per night.

Sunday, June 1, 2014

Meeting another Cluster Head in person for the 1st time

Yesterday My family and I met another Cluster Head and her spouse.
This was the very first time I have met another survivor in person. And her spouse.
She is a survivor in more ways than one.....

Monday, May 19, 2014

It's tough somedays talking to the ignorant

Its tough some days talking to the ignorant. But they are only ignorant until we educate them and then they are just heartless bastards who don't care or did not want to learn or think they have the cure.

Hey, have you ever told someone you have Cluster Headaches? And their immediate response was...

Tuesday, April 15, 2014

I do what I do because it is something far greater than I

The videos on YouTube, the blog, the Facebook page on Cluster Headaches, the Google page, the twitter account keeps me busy. Its because I help. Its because I do all of this for a far greater good than I. Today, I ask your help.

Friday, March 28, 2014

Tuesday, February 25, 2014

Social Media, 2years ago was DBS brain surgery #2 of 4. Life today.

OK. So I have caved into the social media blitz. I personally was not a fan of Facebook simply because reading status on people washing their hair didn't interest me.

So I made a FB page not of me Tom *******, I made one of ClusterHead Survivor. A guy who had 4 brain surgeries and has Cluster Headaches.

Wednesday, January 22, 2014

Praying son does not get Cluster Headaches. as he has chronic migraines and tension headaches

A parents worst fear is that they inherit their diseases and ailments. IN last couple years my son now age 15 has been suffering chronic migraines and tension headaches.

It breaks my heart to see him suffer like this day and night non stop and like any parent with a brain cell wishes no pain upon their children and have asked god many times to take his pain and give it to me.

Wednesday, December 25, 2013

Merry Christmas

Merry Christmas to all.
Today, I and many others celebrate the birth of Jesus. For some others its just a time to get together with family and inadvertently celebrate Christmas. Either way I wish everyone a Merry Christmas.

I look back in review of the last year I and my family has had.

Thursday, December 12, 2013

RIP Jayden

Ya know the last 4 days have been F'ing hell for me. I have had 4 nights of 2 am Kip 10 attacks. Battling migraines everyday and have clusters at the same time during the daytime as well. WTF???
 
But yesterday at 2am during my attack only a block from my house, a stolen truck with a 14 yr old kid driving, wrapped a truck around the tree and passed away. He was my sons friend.

Tuesday, December 10, 2013

Please Do Not Drink and Drive

I don't care its the holiday season and the house, work and social parties are among us.
If you drink, do not drive. Period. And please forward this video link to anyone prior to going out for the night. Its all I ask. Not Cluster headache related but please do not drink and drive.
RIP, James, Mike, Scotty and Jim.
Merry Christmas everyone

http://www.youtube.com/watch?v=Z2mf8DtWWd8

Friday, November 29, 2013

Stop Hunger- Feed the homeless-You can help

Despite being sick and not living sick I do look around me and know what the hell is happening  in our community.

Tuesday, November 19, 2013

Update on new DBS programming-side affects,life in general

Its been a little while since I last wrote. Partially because I been dealing with some things that not only had me concerned yet scared because I had no idea why they were happening and I can not stop them.

In September it had

Wednesday, October 16, 2013

Sucide is NOT the answer

I am not a doctor. I will never recommend any drugs for anyone to take. I am a survivor. I only give a survivors point of view and share my experiences. There is professional help out there. No matter where you live.

Thursday, October 10, 2013

Forgive them as they do not know,praise the ones who ask

Jesus once said that...but todays blog isn't about biblicle scripture. Its about me and forgiving those who do not know. Do not understand and praising those who do take the time to listen, enquire and understand.

Just yesterday again I was judged parking in handicap parking spot.

Tuesday, September 24, 2013

Update on health, EMS ride, and fun times, NOT

I'm just letting some know....I'm really struggling lately. Struggling with allot of things due to

Monday, September 2, 2013

DRUGS and MY CHOICE

Its seems to me that after 203,000 views on my YouTube video and countless efforts to get people to read parts of my blog in explanation of my choice not to do drugs its not evident enough. So this is why today....I am going to spell it out for some and help others understand my decision not to use drugs.

Lets start at the beginning.

Tuesday, July 23, 2013

Personal Update

Hello. I have not written in awhile. Its summer time and since I loathe any cold weather I do my absolute best to be outside as much as possible. I love 1 season...summer and hot.

Sunday, July 7, 2013

Non Cluster Headache people...listen up

G'day. This post is not intended for families of survivors or themselves. It is directed at friends, colleagues, associates, co-workers, employers, neighbours, basically anyone that comes into contact with a "Cluster Head"  in their lifetime.

Sunday, June 23, 2013

Dr.Sanjay Gupta on CNN are you listening ?

Dear Dr. Sanjay Gupta:

I am a chronic Cluster Headache Survivor with 4 brain surgeries under my belt. Yes, this is my feeble attempt at having hopes of being interviewed on CNN by you to discuss awareness for CH and perhaps my DBS surgeries I have had.

I have written CNN, Your office and to my dismay never heard back.

I am now relying on all my friends, family, blog readers and my YouTube Page supporters to reach you to get on TV and be interviewed.

As you know this is one deadly disease. Nicknamed the suicide headache and for obvious reasons.

There is no cure, many of us undiagnosed, many of us living without proper medical treatment.

I have a YouTube page with well over 300,000 hits, just started my blog in December 2012 and almost 50,000 hits. I need millions of hits to spread awareness.

I lost my vanity along time ago. I have been contacted about suicide twice prior to the act. There is a reason Dr.Peter Goadsby has coined this term "The Worlds Most Painful Disease known to Medical Science".  There is not other form of pain any worse.
The sooner awareness is spread, the sooner people can get the help they need.

Not a single Cluster Head would ever dream of asking for pity. Yet we seek understanding as even our own family members have no idea the pain we endure. Its torture,inhuman,unjust and severe.

I and others have lost friends, relationships, jobs and even taken their lives over this.

We do not seek attention yet so many sufferers "cash out" where as with help from advocacy, awareness, and certain treatments, some of us want to live and fight "The Beast" and not give up.

I use the term 'Survivors" vs "Sufferers" because that's what we are....surviving.

Please interview me.I am officially "disabled" in Canada. And dedicating my life now to spreading awarness, helping others cope, being positive, supportive and offering hope.

Please Dr.Sanjay Gupta, help us.

http://www.youtube.com/watch?v=fNouKvGCqIM


********************************************************************************

I am now asking every single person that reads this blog, watches my YouTube videos, to Tweet, email, hand mail Dr.Sanjay Gupta and or CNN. Any help is appreciated. I can no longer do this alone. PLEASE HELP

https://twitter.com/drsanjaygupta

http://sanjayguptamd.blogs.cnn.com/

https://www.facebook.com/pages/DrSanjay-Gupta/117263381701271

http://www.emoryhealthcare.org/neurosurgery/surgeons/sanjay-gupta.html