Tuesday, July 25, 2017

12 years ago today I got sick-recap

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

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

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

Let's review and reflect on 12 years.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

                                                                       Never Give UP

Sunday, July 23, 2017

Today, 2 years ago today I was about to loose my mom.

My dad is mute. Well, he can talk with the aid of a speaking machine. He is a neck breather. Lost his voice to cancer in 2001.

My dad and I would communicate through email as they lived across town and with smart phones we would communicate almost instantly. With dads speaking machine I can understand him 99.9% of the time. On rare occasions, strangers can understand him and others don't understand a single word.

Mom and dad came from Europe in 1967. On Canada Day in fact. July 1, 1967. So dad's English was a second language. Actually, it was like his 8th language he learned. So pops spelling wasn't always the best. So, if I got an email from pop, I knew it wasn't the best spelling. This particular day his email frightened me.

Dad's email was broken, gibberish and made no sense. I had just seen my folks about 1.5 weeks prior maybe 2 weeks and things appeared somewhat normal. Despite me having a gut feeling the last dinner I had over there, something wasn't right.

I got the email around 9 pm. I texted my wife the email made no sense and I was going to drive over to their place to check up on them. My wife was at work.

I drove over. And was horrified with what I saw.

My dad on the couch in his underwear. So weak, it took him 10 min to get him to say 3 words to me. They were " mom, sleep, week". I tried to get dad to drink a bottle of water but he was s weak he couldn't even hold the bottle of water. I walked over to the kitchen and it was in total disree. My folks have been impeccably tidy, neat, organized clean people. The kitchen had food over the stove, maggots and fruit flies. It was bad. It was a mess. I ran to the bedroom and my mom was asleep. I woke her up and she knew who I was but nothing else. Every answer she gave to any question was I don't know.

I called 911 and had 2 ambulances come. Because they were not in any trauma other than cognitive and were breathing and somewhat talking. They did not rush over. In fact, I wanted 30-45 min for an ambulance. Then only one showed. While we waited my mom was crying and didn't want to leave. My dad was able to nod to questions and turns out my mom had been asleep for 7 days. Literally.The paramedics then ordered a second ambulance. There was NO WAY I could take both my parents to hospital.

Since dad relied on mom for 52 years breakfast lunch and dinner, Dad was starving, dehydrated and weak. His ankles swollen and barely able to walk. Mom knew who I and dad were but that was it.

My wife rushed over from work, grabbed their dog and went home while I went to emergency.

So there I am with my mom on my left, and my dad on my right in two beds at the hospital.

Testing both my parents for obvious signs of cognitive and health issues. They took my mom for a cat scan. I spent the night sleeping in emerg on a chair with them both, Well I didn't sleep.

Doctors took mom away for the cat scan and pulled me aside. Since dad wasn't cognitively all there from lack of food and water, They spoke to me. They told me mom had 4 lesions on her brain.  And they were going to give her an MRI next. At 8 am. They told me my mom had 25 lesions on her brain, a large tumar on her lungs, One on her adrenal gland and in her liver too. They said she had 30-60 days to live. Maybe  60 with radiation.

They suggested radiation to start aggressive treatment for the next 5 days starting Monday. It was Friday now.

I was crushed, By this time they had given mom some medication to reduce the swelling in her brain. And she was now sorta able to cognitively speak normal and answer questions. And it is true, she was asleep for 7 days. No bathroom, no food, Just sleep. She said she had a bad headache and went to bed, Last she remembered. Dad did not know her prognosis. I didn't want to tell him because he wasn't well and I wanted a doctor to explain to him for validity. And they did after I went home.

I now had to tell my son and wife.

I went to their place and got clothes, and a few things. Rushed home on no sleep and did a few things that needed to be done. And back to the hospital. I had been awake 40+ hrs at this point.

This was an extremely tough time because we just lost our rescue dog and my son had left home few months prior. My wife and I had to make decisions for both my parents as I was the ONLY one in their life for the last 16 years. It was all on me. Everything. Right to the end.

When I arrived back at the hospital they had moved dad to the 4th floor. General medicine area. And mom to the 7th floor. Neurology.

When they told me where my mom was I had a hard time. Not only was it the same room I recovered from brain surgery in...it was the same bed. Same Doctors, nurses, staff...

We went at got dad in a wheel chair. And brought him to mom everyday. Dad was very upset. As I was too. He got told she was dying and his best friend of 52 years was dying. Mom was told before we got there. Yet the entire time no one ever talked about it to her. I asked mom once if she was afraid to die and before I could blink it was a stern NO.

Mom was right with God and had no fear of dying.

My mom was an emotional person but the best-hearted person you would ever meet. She loved and I mean loved cooking for people. She loved to see you leave full of food when visiting her.

Mom had watched a sibling die of starvation as a child. She had it really really rough as a kid. And it was important no one ever left hungry. My mom thrived on being a giver.

As mom laid there day after day, she knew what was happening but we didn't talk about it. No one wanted to upset her. She denied wanting to be in palliative because psychologically she knew. There was a waiting list to get up there and she didn't want to go.

She had old friends come and visit her and only once she got really upset. I'd rather not mention it because it was cowardly.

Every day  I was afraid is this the last time I'll speak to mom? Some days you would see her slip away. Some days she seemed fine. By the third week, we noticed a fast decline.

We were also cleaning out their place.  Selling 75% of their furniture, selling mine. And packing their stuff. We also had to hire a renovator to gut the basement and make it nice for dad to live in.

This same piece of shit renovator, 2 days after mom passed stole my mom's painting, took the balance of the money and ran off with a completely fucked up job unfinished and done very very poorly.

I gave my mom a haircut and it was the hardest thing I had to do. It was her last. She cried as I hugged her after. I picked up some hair and put it in my pocket.

My son would come to visit but stopped coming about the 3rd week. I'm sure it was as equally as hard on him but as a teenager, they deal with loss differently.

My mom did fall off the commode when she was there and turns out she fractured her spine and she was in grave pain.

The hospital was doing a fine job taking care of both my parents. Only once I lost it on a doctor and was close to being arrested.

They were transporting my mom to another hospital for radiation. To slow down cancer and one day they wanted to take my mom and leave her at the other hospital. I went ballistic on one doctor screaming at him telling him you do NOT remove a dying woman from her husband to another hospital! I'm sure my threat to his well being changed his mind. What fucktard takes a dying woman with a month to live away from her husband who can not visit her??? He knew my dad was on 4th floor and mom was on 7th but he said it is not convenient for us to keep them both here. I changed his mind. I am not a violent person but I got angry and ugly fast.

Mom spent 31 days in the same hospital bed I laid in. 31 st day she went to palliative. By this time dad was staying with us. He spent 14 days in the hospital. And was getting better every day with his health.

They asked if we wanted her to be comfortable but the trade off was she would be asleep or out of it while she was in her final time.

We all agreed she was in pain and needed relief. But the trade off was that she wasn't with us anymore to talk to.

That last day the staff told us she probably had a week. But we knew something was up. The day before my dad kissed my mom. And she kissed dad back. I finally had a chance to be alone with mom. As always dad or my wife was there. I promised mom I would take care of dad and the dog, and it was ok to go. That we loved her and would miss her. Her eyes were shut. I wasn't sure if she even heard me then her eyes opened for 1/2 a nano second and she lipped "I love you" to me. It was the last words she ever spoke.

The next day I had a gut feeling. We stayed to about 7 pm. At 9:30 we got a call to hurry over NOW.

........as I got off the elevator and seen the look on the nurse's face I knew she had just passed. We missed her by 5 min. I think mom wanted it that way. She didn't want us to see her go.

We spent the next 2 hrs sobbing over her and my dad wanted to leave. It was so hard because my mom was to be cremated and no funeral. It was the last time I was ever going to see her. Ever.

I was the last one in the room and left. As I stood in the hallway, The nurse was speaking to my dad and wife ahead of me.

All of a sudden I saw my mom pop out of the room on a yellow sweater, With a glow around her head almost like a halo but more light brightness. She waved and smiled at me.

I rubbed me eyes in total disbleif thinking I am under duress and just sad. And opened my eyes again and mom smiled at me again and waived and then she vanished.

I could abosiltely care or less if a single human being believes me what I seen. I know what I saw. And don't care what anyone thinks. It was mom saying bye to me.

It was probably the hardest thing I had gone through in life with loss. I had lost friends, I had lost my dog, I had lost my health but no one prepares you for this kinda loss. Compiled with my dad, renovator, no funeral. Cremation business who didn't release my moms remains for a week and all the other stuff going on was tough.  I did not start to grieve for some time to come.

It is only now I am able to talk about what happened. I smile more now thinking of mom then cry in sadness she is gone.

It taught me a lot. Life is short, precious and once someone is gone there is no righting a wrong, there is no more sorry's. No more making up or taking back or whatever. The time is now.

Mind you I live with the clearest of conscious. I loved my mom very much. I am so glad I spent all those years being there for her when others were not. I got to share 43 years of my life with my mom, And she gave me so much and sacrificed an incredible amount for her children. More than most.

I only wish I got sick after she passed. I can't imagine how hard it was on her seeing me suffer and go through all the brain surgeries etc. No parent ever likes seeing their child suffer no matter what age.

As sad as it was and as quick as things happened. I am glad I was there for mom until the very end.

This blog probably has no meaning to you but it was for me. And until you had a parent you love pass I guess it doesn't apply to you.And I hope it doesn't for a long time.

I miss you momma

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.

For years when I started my YouTube channel people's reactions were almost identical. Try pot, marijuana, ganja, Mary Jane, Cannabis, the herbs.....and many more names.

While I have so many different health issues, there is no such thing for me as one medicine for all. I truly wish that was the case.

I made a VLOG on my YouTube channel explaining Medicinal Marijuana and my prescription. The who, what where and why.

I encourage you to check it out, give a like and subscribe !

Click here to watch my Prescribed Medical Marijuana VLOG

Tuesday, June 6, 2017

200 th VLOG. Have a laugh, the world needs more of it.

Wow, 200 consecutive VLOGS. I did it !

Fact of the matter the first 100 seemed like they took forever but the last 100 seemed quick,

Well I have not got famous but I have received numerous comments helping people so that is all that matters to me. Helping others with positive messages to inspire people to live outside chronic pain.

This 200th VLOG was done over 200 VLOGS of some things funny.

Enjoy, and please if you haven't, SUBSCRIBE, LIKE and SHARE !

Click Here for VLOG 200

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.